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Re: [Mito] Re: dizziness,headaches

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  • David Staup
    Robert try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito... 1 to 3 ml of the
    Message 1 of 20 , Jul 1, 2013
      Robert

      try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
       1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

      how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

      you will know within days that this treatment is working.

      If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

      David




       


      On 6/30/2013 11:59 PM, Robert Pische wrote:
       



      My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
      Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

      ------------------------------
      On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

      >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
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      > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
      > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...> To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
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      > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
      >
      >Missy
      >
      >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
      >>
      >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
      >>
      >> Roger
      >>
      >> To: Mito@yahoogroups.com
      >> From: neumandiane@...
      >> Date: Sun, 23 Jun 2013 08:28:51 -0700
      >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
      >>
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      >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
      >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
      >>
      >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
      >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
      >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
      >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
      >>
      >> From: Alyssa Davi <johnalyssa43@...>
      >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
      >> Sent: Sunday, June 23, 2013
      >> 9:59 AM
      >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
      >>
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      >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
      >> To: Mito@yahoogroups.com
      >> Sent: Sunday, June 23, 2013 10:23 AM
      >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
      >>
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      >> Cindy,
      >>
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      >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
      >>
      >>
      >>
      >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
      >>
      >>
      >>
      >> Suzanne
      >>
      >>
      >>
      >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
      >>
      >> >
      >>
      >> >
      >>
      >> > Hi Suzanne,
      >>
      >> >
      >>
      >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
      > of
      >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
      >>
      >> >
      >>
      >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
      >>
      >> >
      >>
      >> > I have read some on this doctors site some.
      >>
      >> >
      >>
      >> > http://www.diabetes-book.com/
      >>
      >> >
      >>
      >> > Cindy C
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    • diane neuman
      Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.
      Message 2 of 20 , Jul 1, 2013
        Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

        There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

        Diane 


         
        http://mitochondrialdepletionsyndrome.blogspot.com/


        From: David Staup <dstaup@...>
        To: Mito@yahoogroups.com
        Sent: Monday, July 1, 2013 8:19 AM
        Subject: Re: [Mito] Re: dizziness,headaches

         
        Robert

        try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
         1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

        how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

        you will know within days that this treatment is working.

        If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

        David




         


        On 6/30/2013 11:59 PM, Robert Pische wrote:
         


        My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
        Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

        ------------------------------
        On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

        >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
        >
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        > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
        > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...> To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
        >
        >
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        >
        > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
        >
        >Missy
        >
        >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
        >>
        >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
        >>
        >> Roger
        >>
        >> To: Mito@yahoogroups.com
        >> From: neumandiane@...
        >> Date: Sun, 23 Jun 2013 08:28:51 -0700
        >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
        >>
        >>
        >>
        >>
        >>
        >>
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        >>
        >>
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        >>
        >>
        >>
        >>
        >>
        >>
        >>
        >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
        >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
        >>
        >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
        >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
        >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
        >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
        >>
        >> From: Alyssa Davi <johnalyssa43@...>
        >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
        >> Sent: Sunday, June 23, 2013
        >> 9:59 AM
        >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
        >>
        >>
        >>
        >>
        >>
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        >>
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        >>
        >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
        >> To: Mito@yahoogroups.com
        >> Sent: Sunday, June 23, 2013 10:23 AM
        >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
        >>
        >>
        >>
        >>
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        >>
        >> Cindy,
        >>
        >>
        >>
        >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
        >>
        >>
        >>
        >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
        >>
        >>
        >>
        >> Suzanne
        >>
        >>
        >>
        >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
        >>
        >> >
        >>
        >> >
        >>
        >> > Hi Suzanne,
        >>
        >> >
        >>
        >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
        > of
        >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
        >>
        >> >
        >>
        >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
        >>
        >> >
        >>
        >> > I have read some on this doctors site some.
        >>
        >> >
        >>
        >> > http://www.diabetes-book.com/
        >>
        >> >
        >>
        >> > Cindy C
        >>
        >
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      • David Staup
        The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death)but in the mast cells it leads
        Message 3 of 20 , Jul 1, 2013
          The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

          http://www.sciencedirect.com/science/article/pii/0006300261904498

          "
          Abstract

          1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.

          2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."

          Number 1 above shows the inhibition of swelling by low doses

          Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl

          somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later

          David










          On 7/1/2013 8:39 AM, diane neuman wrote:
           
          Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

          There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

          Diane 


           

          From: David Staup <dstaup@...>
          To: Mito@yahoogroups.com
          Sent: Monday, July 1, 2013 8:19 AM
          Subject: Re: [Mito] Re: dizziness,headaches

           
          Robert

          try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
           1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

          how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

          you will know within days that this treatment is working.

          If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

          David




           


          On 6/30/2013 11:59 PM, Robert Pische wrote:
           


          My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
          Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

          ------------------------------
          On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

          >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
          >
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          > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
          > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
          >
          >
          >
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          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
          >
          >Missy
          >
          >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
          >>
          >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
          >>
          >> Roger
          >>
          >> To: Mito@yahoogroups.com
          >> From: neumandiane@...
          >> Date: Sun, 23 Jun 2013 08:28:51 -0700
          >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
          >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
          >>
          >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
          >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
          >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
          >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
          >>
          >> From: Alyssa Davi <johnalyssa43@...>
          >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
          >> Sent: Sunday, June 23, 2013
          >> 9:59 AM
          >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
          >> To: Mito@yahoogroups.com
          >> Sent: Sunday, June 23, 2013 10:23 AM
          >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >>
          >> Cindy,
          >>
          >>
          >>
          >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
          >>
          >>
          >>
          >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
          >>
          >>
          >>
          >> Suzanne
          >>
          >>
          >>
          >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
          >>
          >> >
          >>
          >> >
          >>
          >> > Hi Suzanne,
          >>
          >> >
          >>
          >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
          > of
          >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
          >>
          >> >
          >>
          >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
          >>
          >> >
          >>
          >> > I have read some on this doctors site some.
          >>
          >> >
          >>
          >> > http://www.diabetes-book.com/
          >>
          >> >
          >>
          >> > Cindy C
          >>
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
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          >




        • diane neuman
          Excellent information David!  Thank you very much!  There is a growing group of us on facebook who have been following the research on mast cells and the
          Message 4 of 20 , Jul 1, 2013
            Excellent information David!  Thank you very much!  There is a growing group of us on facebook who have been following the research on mast cells and the impact on Mito, EDS , etc.   Fascinating stuff!  

            Diane
             
            http://mitochondrialdepletionsyndrome.blogspot.com/


            From: David Staup <dstaup@...>
            To: Mito@yahoogroups.com
            Sent: Monday, July 1, 2013 10:14 AM
            Subject: Re: [Mito] Re: dizziness,headaches

             
            The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

            http://www.sciencedirect.com/science/article/pii/0006300261904498

            "
            Abstract
            1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.
            2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."
            Number 1 above shows the inhibition of swelling by low doses
            Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl
            somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later
            David









            On 7/1/2013 8:39 AM, diane neuman wrote:
             
            Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

            There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

            Diane 


             

            From: David Staup <dstaup@...>
            To: Mito@yahoogroups.com
            Sent: Monday, July 1, 2013 8:19 AM
            Subject: Re: [Mito] Re: dizziness,headaches

             
            Robert

            try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
             1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

            how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

            you will know within days that this treatment is working.

            If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

            David




             


            On 6/30/2013 11:59 PM, Robert Pische wrote:
             


            My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
            Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

            ------------------------------
            On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

            >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
            > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
            >
            >Missy
            >
            >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
            >>
            >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
            >>
            >> Roger
            >>
            >> To: Mito@yahoogroups.com
            >> From: neumandiane@...
            >> Date: Sun, 23 Jun 2013 08:28:51 -0700
            >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
            >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
            >>
            >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
            >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
            >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
            >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
            >>
            >> From: Alyssa Davi <johnalyssa43@...>
            >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
            >> Sent: Sunday, June 23, 2013
            >> 9:59 AM
            >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
            >> To: Mito@yahoogroups.com
            >> Sent: Sunday, June 23, 2013 10:23 AM
            >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >>
            >> Cindy,
            >>
            >>
            >>
            >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
            >>
            >>
            >>
            >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
            >>
            >>
            >>
            >> Suzanne
            >>
            >>
            >>
            >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
            >>
            >> >
            >>
            >> >
            >>
            >> > Hi Suzanne,
            >>
            >> >
            >>
            >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
            > of
            >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
            >>
            >> >
            >>
            >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
            >>
            >> >
            >>
            >> > I have read some on this doctors site some.
            >>
            >> >
            >>
            >> > http://www.diabetes-book.com/
            >>
            >> >
            >>
            >> > Cindy C
            >>
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
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            >
            >






          • marcianar
            Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of
            Message 5 of 20 , Jul 1, 2013
              Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of Benadryl 2 or 3 times/day.

              Maureen

              On Jul 1, 2013, at 11:14 AM, David Staup <dstaup@...> wrote:

               

              The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

              http://www.sciencedirect.com/science/article/pii/0006300261904498

              "
              Abstract

              1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.

              2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."

              Number 1 above shows the inhibition of swelling by low doses

              Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl

              somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later

              David










              On 7/1/2013 8:39 AM, diane neuman wrote:
               
              Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

              There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

              Diane 


               

              From: David Staup <dstaup@...>
              To: Mito@yahoogroups.com
              Sent: Monday, July 1, 2013 8:19 AM
              Subject: Re: [Mito] Re: dizziness,headaches

               
              Robert

              try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
               1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

              how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

              you will know within days that this treatment is working.

              If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

              David




               

              On 6/30/2013 11:59 PM, Robert Pische wrote:
               


              My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
              Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

              ------------------------------
              On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

              >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
              > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
              >
              >Missy
              >
              >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
              >>
              >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
              >>
              >> Roger
              >>
              >> To: Mito@yahoogroups.com
              >> From: neumandiane@...
              >> Date: Sun, 23 Jun 2013 08:28:51 -0700
              >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
              >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
              >>
              >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
              >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
              >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
              >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
              >>
              >> From: Alyssa Davi <johnalyssa43@...>
              >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
              >> Sent: Sunday, June 23, 2013
              >> 9:59 AM
              >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
              >> To: Mito@yahoogroups.com
              >> Sent: Sunday, June 23, 2013 10:23 AM
              >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >>
              >> Cindy,
              >>
              >>
              >>
              >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
              >>
              >>
              >>
              >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
              >>
              >>
              >>
              >> Suzanne
              >>
              >>
              >>
              >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
              >>
              >> >
              >>
              >> >
              >>
              >> > Hi Suzanne,
              >>
              >> >
              >>
              >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
              > of
              >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
              >>
              >> >
              >>
              >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
              >>
              >> >
              >>
              >> > I have read some on this doctors site some.
              >>
              >> >
              >>
              >> > http://www.diabetes-book.com/
              >>
              >> >
              >>
              >> > Cindy C
              >>
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
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            • David Staup
              Hi Maureen, No I have an in vitro study showing the effects of antihistamine on MS but no human studies. Who in this world is going to study something that is
              Message 6 of 20 , Jul 1, 2013
                Hi Maureen,

                No I have an in vitro study showing the effects of antihistamine on MS but no human studies. Who in this world is going to study something that is already available and very cheap! NO PROFIT THERE.

                I have been running my own trials.

                Here is a response that should interest you:


                " i have been watching for differences and i have seen them personally. i try to remind vicki and watch after her to take hers everyday and she forgets sometimes. her memory is still not good but seems to be getting some better. she has a lot of personal stress, family related, and stays busy to keep from worrying so.
                i  may have some great news for you about me but i'm watching closely first to see what's really happening.   i'm doing nothing else to cause the difference but just don't want to say until i feel sure. i'm excited.  i've always had a lot of allergies but have never seen this happen personally, just read about it in case histories.. i studied allergies and worked hands on with a lot of patients in california for 10 years.  my daughter, very young at the time, had a lot of allergies to foods and it peaked my interest to help her as much as possible.   it was so frustrating to go to doctors about it because most didn't have a clue.   anyway, i will let you know soon."

                Vicki in the above is the MS patient that I had start the low dose benadryl and the woman writing is a friend supporting her.

                this was her first report:


                "i'm hooked on it. i love that it helps me breath better and i feel better. my allergies would have me sick several time by now but so far i got past all this cool damp weather.  vicki seems to be still more energetic and alert. however she fell last weekend and broke  her right arm near the wrist.  has her really frustrated.  she'll be fine soon. we'er all looking out for her.
                thanks for keeping in touch. will let you know if we notice anything else. "


                The doses that I'm getting positive feedback on is anywhere for 1 mg per 25 lbs down to 1 mg per 50 lbs of body weight.

                David



                On 7/1/2013 10:45 AM, marcianar@... wrote:
                 
                Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of Benadryl 2 or 3 times/day.

                Maureen

                On Jul 1, 2013, at 11:14 AM, David Staup <dstaup@...> wrote:

                 

                The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

                http://www.sciencedirect.com/science/article/pii/0006300261904498

                "
                Abstract

                1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.

                2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."

                Number 1 above shows the inhibition of swelling by low doses

                Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl

                somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later

                David










                On 7/1/2013 8:39 AM, diane neuman wrote:
                 
                Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

                There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

                Diane 


                 

                From: David Staup <dstaup@...>
                To: Mito@yahoogroups.com
                Sent: Monday, July 1, 2013 8:19 AM
                Subject: Re: [Mito] Re: dizziness,headaches

                 
                Robert

                try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
                 1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredient of diphenhydramine

                how this works is low doses inhibit apoptosis, a form of cell death mediated by the mitochondria that becomes excessive when the mito are stressed.

                you will know within days that this treatment is working.

                If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....you WILL be amazed.

                David




                 

                On6/30/2013 11:59 PM, Robert Pische wrote:
                 


                My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
                Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

                ------------------------------
                On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

                >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
                > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
                >
                >Missy
                >
                >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
                >>
                >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
                >>
                >> Roger
                >>
                >> To: Mito@yahoogroups.com
                >> From: neumandiane@...
                >> Date: Sun, 23 Jun 2013 08:28:51 -0700
                >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
                >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
                >>
                >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
                >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
                >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
                >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
                >>
                >> From: Alyssa Davi <johnalyssa43@...>
                >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                >> Sent: Sunday, June 23, 2013
                >> 9:59 AM
                >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
                >> To: Mito@yahoogroups.com
                >> Sent: Sunday, June 23, 2013 10:23 AM
                >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> Cindy,
                >>
                >>
                >>
                >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
                >>
                >>
                >>
                >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
                >>
                >>
                >>
                >> Suzanne
                >>
                >>
                >>
                >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
                >>
                >> >
                >>
                >> >
                >>
                >> > Hi Suzanne,
                >>
                >> >
                >>
                >> > Maybe this site will help. I gradually reduced my carbs(they were not real high anyway),and gradually increased my fats, which helped me adapt to ketosis easier. It sill took a few weeks or longer, and I do not now get ravenously hungry or weak between meals, and can go 5 to 6 hours, and no snacks, however I may still go a bit low in blood sugar perhaps causing some other symptoms. many years ago, I would get a headache every day, before I was diagnosed with low blood sugar. Do you have a blood sugar monitor? I am considering getting one. I am not so sure I want to use glucose tablets to raise mine up if still kind of low at this stage for me after 4 years of ketosis. If it was getting dangerously low, that would be different. As for is it getting low enough to cause your migraines, that is difficult to say. Being in ketosis seems to reduce migraines, and fats will also help the detox of toxins, and neurotransmitters will be more balanced. Some
                > of
                >> us in some other groups that have different types of diabetes do try to work on diet, whether or not to go very very low on carbs, or not.
                >>
                >> >
                >>
                >> > http://www.ketogenic-diet-resource.com/reactive-hypoglycemia.html
                >>
                >> >
                >>
                >> > I have read some on this doctors site some.
                >>
                >> >
                >>
                >> > http://www.diabetes-book.com/
                >>
                >> >
                >>
                >> > Cindy C
                >>
                >
                >
                >
                >
                >
                >
                >
                >
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                >
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                (Message over 64 KB, truncated)
            • David Staup
              one more thing ... the woman who wrote the email had been taking 50 mg benadryl 3 times a day before going to the low dose!!! much better results...... David
              Message 7 of 20 , Jul 1, 2013
                one more thing ...

                the woman who wrote the email had been taking 50 mg benadryl 3 times a day before going to the low dose!!! much better results......

                David


                On 7/1/2013 11:01 AM, David Staup wrote:
                 

                Hi Maureen,

                No I have an in vitro study showing the effects of antihistamine on MS but no human studies. Who in this world is going to study something that is already available and very cheap! NO PROFIT THERE.

                I have been running my own trials.

                Here is a response that should interest you:


                " i have been watching for differences and i have seen them personally. i try to remind vicki and watch after her to take hers everyday and she forgets sometimes. her memory is still not good but seems to be getting some better. she has a lot of personal stress, family related, and stays busy to keep from worrying so.
                i  may have some great news for you about me but i'm watching closely first to see what's really happening.   i'm doing nothing else to cause the difference but just don't want to say until i feel sure. i'm excited.  i've always had a lot of allergies but have never seen this happen personally, just read about it in case histories.. i studied allergies and worked hands on with a lot of patients in california for 10 years.  my daughter, very young at the time, had a lot of allergies to foods and it peaked my interest to help her as much as possible.   it was so frustrating to go to doctors about it because most didn't have a clue.   anyway, i will let you know soon."

                Vicki in the above is the MS patient that I had start the low dose benadryl and the woman writing is a friend supporting her.

                this was her first report:


                "i'm hooked on it. i love that it helps me breath better and i feel better. my allergies would have me sick several time by now but so far i got past all this cool damp weather.  vicki seems to be still more energetic and alert. however she fell last weekend and broke  her right arm near the wrist.  has her really frustrated.  she'll be fine soon. we'er all looking out for her.
                thanks for keeping in touch. will let you know if we notice anything else. "


                The doses that I'm getting positive feedback on is anywhere for 1 mg per 25 lbs down to 1 mg per 50 lbs of body weight.

                David



                On 7/1/2013 10:45 AM, marcianar@... wrote:
                 
                Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of Benadryl 2 or 3 times/day.

                Maureen

                On Jul 1, 2013, at 11:14 AM, David Staup <dstaup@...>wrote:

                 

                The mast cell activation is initiated by mitochondrial swelling.In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

                http://www.sciencedirect.com/science/article/pii/0006300261904498

                "
                Abstract

                1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.

                2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."

                Number 1 above shows the inhibition of swelling by low doses

                Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl

                somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later

                David










                On 7/1/2013 8:39 AM, diane neuman wrote:
                 
                Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

                Thereis some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

                Diane 


                 

                From: David Staup <dstaup@...>
                To: Mito@yahoogroups.com
                Sent: Monday, July 1, 2013 8:19 AM
                Subject: Re: [Mito] Re: dizziness,headaches

                 
                Robert

                try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
                 1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredientof diphenhydramine

                howthis works is low doses inhibit apoptosis, a form of cell death mediatedby the mitochondria that becomes excessive when the mito are stressed.

                you will know within days that this treatment is working.

                If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....youWILL be amazed.

                David




                 

                On6/30/2013 11:59 PM, Robert Pische wrote:
                 


                My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
                Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

                ------------------------------
                On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

                >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
                > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
                >
                >Missy
                >
                >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
                >>
                >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
                >>
                >> Roger
                >>
                >> To: Mito@yahoogroups.com
                >> From: neumandiane@...
                >> Date: Sun, 23 Jun 2013 08:28:51 -0700
                >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
                >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
                >>
                >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
                >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
                >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
                >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
                >>
                >> From: Alyssa Davi <johnalyssa43@...>
                >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                >> Sent: Sunday, June 23, 2013
                >> 9:59 AM
                >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
                >> To: Mito@yahoogroups.com
                >> Sent: Sunday, June 23, 2013 10:23 AM
                >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >>
                >> Cindy,
                >>
                >>
                >>
                >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
                >>
                >>
                >>
                >> In the past, I had noticed that I fell asleep in spite of eating a "healthy" food. Like when my mother made me a tuna sandwich on 12 grain whole wheat pita. Or if I some kinds of bread product, but not all. I finally decided to make a list of what made me tired. I was surprised to see that it was over 20 things! It disappoints me that I can't eat dried apricots, I love them! I called my primary doctor and asked him to do bloodwork to see if I had a gluten problem. Nope....tests came back as.....normal.
                >>
                >>
                >>
                >> Suzanne
                >>
                >>
                >>
                >> --- In mailto:Mito%40yahoogroups.com, "cindy_martian" <cindy_martian@> wrote:
                >>
                >> >
                >>
                >> >
                >>
                >> > Hi Suzanne,
                >>
                >> >


                (Message over 64 KB, truncated)
              • diane neuman
                The folks that I have been following are diagnosed with either both Mito and Mast or both EDS and Mast(and a couple with all three diagnoses!) all are
                Message 8 of 20 , Jul 1, 2013
                  The folks that I have been following are diagnosed with either both Mito and Mast or both EDS and Mast(and a couple with all three diagnoses!) all are benefiting from H1 and H2 interventions..(there are also a number of reasonable safe and common prescription meds these patients can use if prescribed by their Drs.) both over the counter.  For a number of the members in my group just the use of the H1 and H2 have made a remarkable difference.   Of course, this is not medical advice, just a mom here.. ALWAYS check with your Dr. before making changes to your health(sorry now a days never hurts to make sure folks know, not medical advice.)

                  Antihistamines, known as H1 blockers, are prescribed to relieve mild allergy symptoms, although they cannot control a severe reaction. Medications in this class include diphendydramine (Benadryl®) and cetirizine (Zyrtec®). An antihistamine can help symptoms subside during anaphylaxis, but it should never be given as a substitute for epinephrine.

                  http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000382.htm  (H2 blockers)

                  How H2 Blockers Help You

                  H2 blockers are used to:
                  • Relieve symptoms of acid reflux, or gastroesophageal reflux disease (GERD), a condition where food or liquid travels backwards from the stomach to the esophagus (the tube from the mouth to the stomach)
                  • Treat a peptic or stomach ulcer

                  Types of H2 Blockers

                  There are many different names and brands of H2 blockers. Most work as well as another. Side effects may be different for different ones.
                  • Famotidine (Pepcid AC, Pepcid Oral)
                  • Cimetidine (Tagamet, Tagamet HB)
                  • Ranitidine (Zantac, Zantac 75, Zantac Efferdose, Zantac injection, and Zantac Syrup)
                  • Nizatidine Capsules (Axid AR, Axid Capsules, Nizatidine Capsules)

                  Taking Your H2 Blockers

                  H2 blockers are most often taken by mouth and are found as tablets, liquids, or capsules.
                  • The most common way of taking them is with the first meal of the day.
                  • It takes 30 - 90 minutes for them to work, but the benefits last for hours. People often take the drugs at bedtime too.
                  • Symptoms may improve for up to 24 hours after taking the drug.
                  H2 blockers may be bought in lower doses at the store without a prescription. If you find yourself taking these most days for acid reflux symptoms for 2 weeks or more, make sure you see your health care provider about your symptoms.
                  If you have a peptic ulcer, your doctor may prescribe H2 blockers along with two or three other medicines for up to 2 weeks.
                  If your doctor prescribed these medicines for you:
                  • Take all of your medicines as your doctor told you to. Try to take them at the same time, or times, each day.
                  • Do not stop taking your medicines without talking with your doctor first. Follow up with your doctor regularly.
                  • Plan ahead so that you do not run out of medicine. Make sure you have enough with you when you travel.

                  Side Effects

                  Side effects from H2 blockers are rare.
                  • Famotidine: most common side effect is headache
                  • Cimetidine: side effects are rare at diarrhea, dizziness, rashes, or headaches may occur
                  • Ranitidine: most common side effect is headache
                  • Nizatidine: side effects are rare
                  If you are breastfeeding or pregnant, talk to your health care provider before taking these medications. Anyone with kidney problems should use famotidine only under a doctor's direction.
                  Tell your health care provider if you are also taking other medicines. H2 blockers may change the way certain drugs work. Cimetidine and nizatidine are least likely to have this problem.

                  When to Call the Doctor

                  Call your doctor if you are having any of the side effects above. Also call your doctor if you are having other unusual symptoms or your symptoms are not improving.

                  Alternate Names

                  Peptic ulcer disease - H2 blockers; PUD - H2 blockers; Gastroesophageal reflux - H2 blockers

                  References

                  Kahrilas PJ, Shaheen NJ, Vaezi MF, Hiltz SW, Black E, Modlin IM. American Gastroenterological Association Medical Position Statement on the management of gastroesophageal reflux disease. Gastroenterology. 2008;135:1383-1391.
                  Richter JE, Friedenberg FK. Gastroesophageal reflux disease. In: Feldman M, Friedman LS, Brandt LJ, eds. Sleisenger and Fordtran's Gastrointestinal and Liver Disease. 9th ed. Philadelphia, Pa: Saunders Elsevier; 2010:chap 43.

                  Update Date: 8/11/2011

                  Updated by: George F. Longstreth, MD, Department of Gastroenterology, Kaiser Permanente Medical Care Program, San Diego, California. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
                  A.D.A.M Quality Logo

                   
                  http://mitochondrialdepletionsyndrome.blogspot.com/


                  From: David Staup <dstaup@...>
                  To: Mito@yahoogroups.com
                  Cc: marcianar@...
                  Sent: Monday, July 1, 2013 11:17 AM
                  Subject: Re: [Mito] Re: dizziness,headaches

                   
                  one more thing ...

                  the woman who wrote the email had been taking 50 mg benadryl 3 times a day before going to the low dose!!! much better results......

                  David


                  On 7/1/2013 11:01 AM, David Staup wrote:
                   
                  Hi Maureen,

                  No I have an in vitro study showing the effects of antihistamine on MS but no human studies. Who in this world is going to study something that is already available and very cheap! NO PROFIT THERE.

                  I have been running my own trials.

                  Here is a response that should interest you:


                  " i have been watching for differences and i have seen them personally. i try to remind vicki and watch after her to take hers everyday and she forgets sometimes. her memory is still not good but seems to be getting some better. she has a lot of personal stress, family related, and stays busy to keep from worrying so.
                  i  may have some great news for you about me but i'm watching closely first to see what's really happening.   i'm doing nothing else to cause the difference but just don't want to say until i feel sure. i'm excited.  i've always had a lot of allergies but have never seen this happen personally, just read about it in case histories.. i studied allergies and worked hands on with a lot of patients in california for 10 years.  my daughter, very young at the time, had a lot of allergies to foods and it peaked my interest to help her as much as possible.   it was so frustrating to go to doctors about it because most didn't have a clue.   anyway, i will let you know soon."

                  Vicki in the above is the MS patient that I had start the low dose benadryl and the woman writing is a friend supporting her.

                  this was her first report:


                  "i'm hooked on it. i love that it helps me breath better and i feel better. my allergies would have me sick several time by now but so far i got past all this cool damp weather.  vicki seems to be still more energetic and alert. however she fell last weekend and broke  her right arm near the wrist.  has her really frustrated.  she'll be fine soon. we'er all looking out for her.
                  thanks for keeping in touch. will let you know if we notice anything else. "


                  The doses that I'm getting positive feedback on is anywhere for 1 mg per 25 lbs down to 1 mg per 50 lbs of body weight.

                  David



                  On 7/1/2013 10:45 AM, marcianar@... wrote:
                   
                  Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of Benadryl 2 or 3 times/day.

                  Maureen

                  On Jul 1, 2013, at 11:14 AM, David Staup <dstaup@...>wrote:

                   
                  The mast cell activation is initiated by mitochondrial swelling.In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

                  http://www.sciencedirect.com/science/article/pii/0006300261904498

                  "
                  Abstract
                  1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.
                  2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."
                  Number 1 above shows the inhibition of swelling by low doses
                  Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl
                  somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later
                  David









                  On 7/1/2013 8:39 AM, diane neuman wrote:
                   
                  Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

                  Thereis some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

                  Diane 


                   

                  From: David Staup <dstaup@...>
                  To: Mito@yahoogroups.com
                  Sent: Monday, July 1, 2013 8:19 AM
                  Subject: Re: [Mito] Re: dizziness,headaches

                   
                  Robert

                  try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
                   1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredientof diphenhydramine

                  howthis works is low doses inhibit apoptosis, a form of cell death mediatedby the mitochondria that becomes excessive when the mito are stressed.

                  you will know within days that this treatment is working.

                  If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....youWILL be amazed.

                  David




                   

                  On6/30/2013 11:59 PM, Robert Pische wrote:
                   


                  My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
                  Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

                  ------------------------------
                  On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

                  >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                  >
                  >
                  >
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                  > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
                  > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                  >
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                  > Have you tried Amaste Brand? Also did you get tested for fructose intolerance? I am fructose intolerant. I blog about my journey u can read a bit about it. Www.missyleone.com.
                  >
                  >Missy
                  >
                  >--- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
                  >>
                  >> I tried mixing my own gluten free flours for about a year with mixed results.I finally gave in,and bought commercially blended GF flour.I avoid a lot of the gluten free mixes,like cake mixes and bread mixes,because they have dairy.I bought a GF chocolate cake mix a few months ago,that had "hidden" dairy ingredients,and had a regression that lasted almost a week.
                  >>
                  >> Roger
                  >>
                  >> To: Mito@yahoogroups.com
                  >> From: neumandiane@...
                  >> Date: Sun, 23 Jun 2013 08:28:51 -0700
                  >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
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                  >>
                  >> Gluten-intolerance can be as distressing and damaging as Celiac, (Living Without or Celiac.com are websites that both talk in detail about how you can have serious issues with gluten, yet test negative)and there isn't any test besides simple avoidance. They are even finding now that the tests they previously relied on to diagnosis Celiac are not as accurate as once thought. If you feel better without it, stay away from it. Just make sure if you do opt to go gluten-free that you make good gluten free flour choices. Starches and rice flour have very little nutritional value beyond simple carbohydrates. But there are higher protein options that have a more similar profile to wheat. Chickpea, millet, teff, sorghum to name a few are easy to blend with a rice flour and starch mix and create a
                  >> very nice and nutritionally competitive alternative. If you buy gluten free products read the labels, often they are full of preservatives, MSG(which is a common trigger in the Mito World) and often have very little nutritional value despite their hefty price tags.
                  >>
                  >> As far as blood sugars, have you had the A1c run? It is a better if not perfect test that will show
                  >> your "average" levels over a longer period of time. This still can miss hypoglycemia since the high's and low's can still average out to a normal reading.
                  >> Our daughter has "reactive hypoglycemia".. we fight it with small frequent meals. We make sure her protein intake is adequate. Doesn't always help, but it seems to reduce some of the issues. If she is overheated or too cold we note an uptick in low blood sugar after eating. Not enough fluids(yep the hydration,hydration , hydration is always important.)
                  >> Diane http://mitochondrialdepletionsyndrome.blogspot.com/
                  >>
                  >> From: Alyssa Davi <johnalyssa43@...>
                  >> To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                  >> Sent: Sunday, June 23, 2013
                  >> 9:59 AM
                  >> Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
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                  >>
                  >>
                  >> It's great if you can manage the headaches/migraines with food elimination. Dairy can give me a migraine. At the UMDF meeting I heard Dr. Boles from LA Children's Hospital talk and he said CoQ10 and riboflavin can help control headaches (and cyclical vomiting). Best,Alyssa From: "szito1024@..." <szito1024@...>
                  >> To: Mito@yahoogroups.com
                  >> Sent: Sunday, June 23, 2013 10:23 AM
                  >> Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                  >>
                  >>
                  >>
                  >>
                  >>
                  >>
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                  >>
                  >> Cindy,
                  >>
                  >>
                  >>
                  >> No, I don't have a blood sugar monitor. Whenever I have my annual checkup, the glucose is fine, within normal limits. I understand that that is just a moment in time, things can fluctuate throughout the day.
                  >>
                  >>
                  >>


                  (Message over 64 KB, truncated)
                • David Staup
                  The only antihistamines that have this property are diphenhydramine, hydroxyzine, and an old russian antihistamines called dimebon... the action of these three
                  Message 9 of 20 , Jul 1, 2013
                    The only antihistamines that have this property are diphenhydramine, hydroxyzine, and an old russian antihistamines called dimebon... the action of these three drugs at low doses are not really related to blocking the receptors it is more to block the release.  These are to only antihistamines that have this property. They are all first generation antihistamines....

                    David



                    On 7/1/2013 12:06 PM, diane neuman wrote:
                     
                    The folks that I have been following are diagnosed with either both Mito and Mast or both EDS and Mast(and a couple with all three diagnoses!) all are benefiting from H1 and H2 interventions..(there are also a number of reasonable safe and common prescription meds these patients can use if prescribed by their Drs.) both over the counter.  For a number of the members in my group just the use of the H1 and H2 have made a remarkable difference.   Of course, this is not medical advice, just a mom here.. ALWAYS check with your Dr. before making changes to your health(sorry now a days never hurts to make sure folks know, not medical advice.)

                    Antihistamines, known as H1 blockers, are prescribed to relieve mild allergy symptoms, although they cannot control a severe reaction. Medications in this class include diphendydramine (Benadryl®) and cetirizine (Zyrtec®). An antihistamine can help symptoms subside during anaphylaxis, but it should never be given as a substitute for epinephrine.

                    How H2 Blockers Help You

                    H2 blockers are used to:
                    • Relieve symptoms of acid reflux, or gastroesophageal reflux disease (GERD), a condition where food or liquid travels backwards from the stomach to the esophagus (the tube from the mouth to the stomach)
                    • Treat a peptic or stomach ulcer

                    Types of H2 Blockers

                    There are many different names and brands of H2 blockers. Most work as well as another. Side effects may be different for different ones.
                    • Famotidine (Pepcid AC, Pepcid Oral)
                    • Cimetidine (Tagamet, Tagamet HB)
                    • Ranitidine (Zantac, Zantac 75, Zantac Efferdose, Zantac injection, and Zantac Syrup)
                    • Nizatidine Capsules (Axid AR, Axid Capsules, Nizatidine Capsules)

                    Taking Your H2 Blockers

                    H2 blockers are most often taken by mouth and are found as tablets, liquids, or capsules.
                    • The most common way of taking them is with the first meal of the day.
                    • It takes 30 - 90 minutes for them to work, but the benefits last for hours. People often take the drugs at bedtime too.
                    • Symptoms may improve for up to 24 hours after taking the drug.
                    H2 blockers may be bought in lower doses at the store without a prescription. If you find yourself taking these most days for acid reflux symptoms for 2 weeks or more, make sure you see your health care provider about your symptoms.
                    If you have a peptic ulcer, your doctor may prescribe H2 blockers along with two or three other medicines for up to 2 weeks.
                    If your doctor prescribed these medicines for you:
                    • Take all of your medicines as your doctor told you to. Try to take them at the same time, or times, each day.
                    • Do not stop taking your medicines without talking with your doctor first. Follow up with your doctor regularly.
                    • Plan ahead so that you do not run out of medicine. Make sure you have enough with you when you travel.

                    Side Effects

                    Side effects from H2 blockers are rare.
                    • Famotidine: most common side effect is headache
                    • Cimetidine: side effects are rare at diarrhea, dizziness, rashes, or headaches may occur
                    • Ranitidine: most common side effect is headache
                    • Nizatidine: side effects are rare
                    If you are breastfeeding or pregnant, talk to your health care provider before taking these medications. Anyone with kidney problems should use famotidine only under a doctor's direction.
                    Tell your health care provider if you are also taking other medicines. H2 blockers may change the way certain drugs work. Cimetidine and nizatidine are least likely to have this problem.

                    When to Call the Doctor

                    Call your doctor if you are having any of the side effects above. Also call your doctor if you are having other unusual symptoms or your symptoms are not improving.

                    Alternate Names

                    Peptic ulcer disease - H2 blockers; PUD - H2 blockers; Gastroesophageal reflux - H2 blockers

                    References

                    Kahrilas PJ, Shaheen NJ, Vaezi MF, Hiltz SW, Black E, Modlin IM. American Gastroenterological Association Medical Position Statement on the management of gastroesophageal reflux disease. Gastroenterology. 2008;135:1383-1391.
                    Richter JE, Friedenberg FK. Gastroesophageal reflux disease. In: Feldman M, Friedman LS, Brandt LJ, eds. Sleisenger and Fordtran's Gastrointestinal and Liver Disease. 9th ed. Philadelphia, Pa: Saunders Elsevier; 2010:chap 43.

                    Update Date: 8/11/2011

                    Updated by: George F. Longstreth, MD, Department of Gastroenterology, Kaiser Permanente Medical Care Program, San Diego, California. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
                    A.D.A.M Quality Logo

                     

                    From: David Staup <dstaup@...>
                    To: Mito@yahoogroups.com
                    Cc: marcianar@...
                    Sent: Monday, July 1, 2013 11:17 AM
                    Subject: Re: [Mito] Re: dizziness,headaches

                     
                    one more thing ...

                    the woman who wrote the email had been taking 50 mg benadryl 3 times a day before going to the low dose!!! much better results......

                    David


                    On 7/1/2013 11:01 AM, David Staup wrote:
                     
                    Hi Maureen,

                    No I have an in vitro study showing the effects of antihistamine on MS but no human studies. Who in this world is going to study something that is already available and very cheap! NO PROFIT THERE.

                    I have been running my own trials.

                    Here is a response that should interest you:


                    " i have been watching for differences and i have seen them personally. i try to remind vicki and watch after her to take hers everyday and she forgets sometimes. her memory is still not good but seems to be getting some better. she has a lot of personal stress, family related, and stays busy to keep from worrying so.
                    i  may have some great news for you about me but i'm watching closely first to see what's really happening.   i'm doing nothing else to cause the difference but just don't want to say until i feel sure. i'm excited.  i've always had a lot of allergies but have never seen this happen personally, just read about it in case histories.. i studied allergies and worked hands on with a lot of patients in california for 10 years.  my daughter, very young at the time, had a lot of allergies to foods and it peaked my interest to help her as much as possible.   it was so frustrating to go to doctors about it because most didn't have a clue.   anyway, i will let you know soon."

                    Vicki in the above is the MS patient that I had start the low dose benadryl and the woman writing is a friend supporting her.

                    this was her first report:


                    "i'm hooked on it. i love that it helps me breath better and i feel better. my allergies would have me sick several time by now but so far i got past all this cool damp weather.  vicki seems to be still more energetic and alert. however she fell last weekend and broke  her right arm near the wrist.  has her really frustrated.  she'll be fine soon. we'er all looking out for her.
                    thanks for keeping in touch. will let you know if we notice anything else. "


                    The doses that I'm getting positive feedback on is anywhere for 1 mg per 25 lbs down to 1 mg per 50 lbs of body weight.

                    David



                    On 7/1/2013 10:45 AM, marcianar@... wrote:
                     
                    Do you know of any research involving therapeutic doses of Benadryl? My mito kid has severe allergies which compromise his quality of life and takes 25 mg of Benadryl 2 or 3 times/day.

                    Maureen

                    On Jul 1, 2013, at 11:14 AM, David Staup <dstaup@...>wrote:

                     
                    The mast cell activation is initiated by mitochondrial swelling. In most cell types mito swelling leads to apoptosis (cell death) but in the mast cells it leads first to mast cell degranulation (the release of histamine).  It is the mitochondrial swelling that LOW doses of benadryl inhibit.

                    http://www.sciencedirect.com/science/article/pii/0006300261904498

                    "
                    Abstract
                    1. It is shown that a number of antihistamine drugs which prevent liver injury inhibit mitochondrial swelling at concentrations at which they do not affect electron transport or oxidative phosphorylation.
                    2. These compounds also inhibit the reversal of swelling induced by ATP and Mg2+ or Mn2+."
                    Number 1 above shows the inhibition of swelling by low doses
                    Number 2 is also important and show why low doses of benadryl in conjunction with high doses of magnesium are used together as part of the most current cancer treatments...low doses of benadryl inhibit swelling except when the swelling has been inhibited previously as in cancer.........amazing stuff this low dose benadryl
                    somewhere I have the study showing mito swelling and the resultant permeability changes are responsible or at least associated with degranulation...I'll look for it later
                    David









                    On 7/1/2013 8:39 AM, diane neuman wrote:
                     
                    Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html

                    Thereis some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.

                    Diane 


                     

                    From: David Staup <dstaup@...>
                    To: Mito@yahoogroups.com
                    Sent: Monday, July 1, 2013 8:19 AM
                    Subject: Re: [Mito] Re: dizziness,headaches

                     
                    Robert

                    try low doses of benadryl...at between 1 mg per 30 lbs and 1 mg per 50 lbs of benadryl... this treatment is helping many with mito...
                     1 to 3 ml of the children's liquid  4 times per day is the typical dose depending on body weight. That's benadryl allergy with the active ingredientof diphenhydramine

                    how this works is low doses inhibit apoptosis, a form of cell death mediatedby the mitochondria that becomes excessive when the mito are stressed.

                    you will know within days that this treatment is working.

                    If you require testimonials before trying this ...let me know... but this is so simple to try and the results are so quick if it's going to work that I can't imagine not trying this....youWILL be amazed.

                    David




                     

                    On6/30/2013 11:59 PM, Robert Pische wrote:
                     


                    My son who has mito metabolic disorder,who gets flare ups once a year of his lactate levels . Just had a bout and was hospitilized for 3 days and his iv with5 percent dextrose and his normal meds of carnotine ,bioti,coq10, l arginine which doc increased .
                    Hes been home now 2 days and has dizzinesz when walking ,1st time for this ,not sure if its lack of sleep,too much arginine or stress from being in hospital. His eating and water intake are wellworried if this could be something or if any of you have any home remedies,thanks very much in advance ,his name is josh 19 year old.

                    ------------------------------
                    On Sat, Jun 29, 2013 6:27 AM PDT Roger Kulp wrote:

                    >I have problems with corn too.I can brak it down like this Wheat GI and bowel symptomsCorn GI bowel and "spacing out" or cognitive problems Dairy full autistic regression.This is because of the folate autoantibodies.Non-GMO soy causes me no problems. But diet alone has not cleared up my GI problems.I need a workup to see if I have mito or if all of my problems are related to folate metabolism.I need to be tested for a bunch of folate related genes.One is SLC46A1.This might explain my GI problems. RogerTo: Mito@yahoogroups.comFrom: neumandiane@...: Sat, 29 Jun 2013 04:06:46 -0700Subject: Re: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                    >
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                    > Roger, our daughter kept getting sick after we removed gluten. Found out she was deathly allergic to corn.A lot of pre-made GF products use a ton of corn like corn starch or even lots of hidden corn like citric acid(derived from corn not citrus these days). I have to mix my own blends. She react's to Bobs(corn contamination at the packaging plant) etc. She reacts to Namaste.. granted, she is pretty darn
                    > sensitive, but until about 2 years ago I had no idea where they "hide" corn in our food, medicines,vitamins etc these days.She does much better without corn. Dianehttp://mitochondrialdepletionsyndrome.blogspot.com/ From: mleone_2000 <mleone_2000@...>To: Mito@yahoogroups.com Sent: Tuesday, June 25, 2013 9:43 PM Subject: [Mito] Re: (adult patient) Hypoglycemia and headaches and hunger?
                    >
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                    > Have you tried Amaste Brand? Also did you get

                    (Message over 64 KB, truncated)
                  • cindy_martian
                    Hi, Thanks, That article is interesting, although not all agree that all those stress hormones as being harmful. I have read a lot about it. At night,
                    Message 10 of 20 , Jul 2, 2013
                      Hi,

                      Thanks, That article is interesting, although not all agree that all those stress hormones as being harmful. I have read a lot about it. At night, especially, in a sleep state where we are paralyzed, those hormones are how the body makes repairs. The feel good hormones build up, and the stress hormones tear down. Our cells do need to die and be replaced at times. As for diet, I do watch my protein levels, and do not keep them high, but I do have very high fat, and very low carb. Some of us with blood sugar problems or overweight, or having chronic pain may need to stress themselves somewhat, as they cannot handle high carbs diets. Sugar, and high carbs are related to oxidative stress also.

                      Cindy C

                      --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                      >
                      > Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html
                      >
                      > There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.
                      >
                      > Diane 
                      >
                      >
                      >  
                      > http://mitochondrialdepletionsyndrome.blogspot.com/
                    • Karin
                      Someone mentioned a group on fb, which group? I have EDS, probable mito, don t know anything about mast cell, and would love to join. Thanks! Karin Sent from
                      Message 11 of 20 , Jul 2, 2013
                        Someone mentioned a group on fb, which group? I have EDS, probable mito, don't know anything about mast cell, and would love to join. Thanks!

                        Karin
                        Sent from my iPod
                      • diane neuman
                        Yep- just goes to show how each patient with Mito has very very individual needs.  From food to climate to medical interventions- what works for one, will not
                        Message 12 of 20 , Jul 2, 2013
                          Yep- just goes to show how each patient with Mito has very very individual needs.  From food to climate to medical interventions- what works for one, will not necessarily work for the next.

                          I am just so grateful that what we have found repeatedly that works for our daughter, is gaining as much acceptance as the GAPS, the Paleo, the grain- free, the sugar free, the low -fat etc.

                          We are grateful for sugar and simple carbs for Abby, without them I am not sure she would be alive. 

                          Some friends of our's do no sugar- and they have found the same stability.

                          Where complex carbs, proteins, and fats need to be reduced for us some need to increase!- crazy crazy disease process and human's hand's down are unique - each needs completely different formulations to get the best function.  The human body never ceases to simply amaze me! :-) 

                          Diane
                           
                          http://mitochondrialdepletionsyndrome.blogspot.com/


                          From: cindy_martian <cindy_martian@...>
                          To: Mito@yahoogroups.com
                          Sent: Tuesday, July 2, 2013 8:31 AM
                          Subject: [Mito] Re: dizziness,headaches

                           
                          Hi,

                          Thanks, That article is interesting, although not all agree that all those stress hormones as being harmful. I have read a lot about it. At night, especially, in a sleep state where we are paralyzed, those hormones are how the body makes repairs. The feel good hormones build up, and the stress hormones tear down. Our cells do need to die and be replaced at times. As for diet, I do watch my protein levels, and do not keep them high, but I do have very high fat, and very low carb. Some of us with blood sugar problems or overweight, or having chronic pain may need to stress themselves somewhat, as they cannot handle high carbs diets. Sugar, and high carbs are related to oxidative stress also.

                          Cindy C

                          --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                          >
                          > Speaking of Benadryl, oxidative stress .... here is a link to an interesting read.  http://www.andrewkimblog.com/2013/06/an-examination-of-diets-avoid-them-all.html
                          >
                          > There is some new research, not sure of the validity but a Dr. who researches Mast Cells(think histamine) found that mast cells can interfere with our mitochondria.   Search Dr. Theo (Mastcell Master) http://www.mastcellmaster.com/.  Again, not sure what has been scientifically proven but both the link above(Andrew Kim Blog) and Dr Theo are food for thought.
                          >
                          > Diane 
                          >
                          >
                          >  
                          > http://mitochondrialdepletionsyndrome.blogspot.com/



                        • diane neuman
                          Here is the link-  https://www.facebook.com/groups/266393983440370/ Diane   ________________________________ From: Karin To:
                          Message 13 of 20 , Jul 2, 2013
                            Here is the link- 

                            https://www.facebook.com/groups/266393983440370/

                            Diane
                             



                            From: Karin <klbernard@...>
                            To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                            Sent: Tuesday, July 2, 2013 8:37 AM
                            Subject: [Mito] Re: dizziness,headaches

                             
                            Someone mentioned a group on fb, which group? I have EDS, probable mito, don't know anything about mast cell, and would love to join. Thanks!

                            Karin
                            Sent from my iPod


                          • cindy_martian
                            Thanks Diane, I am not familiar with the protocol you mention. However, a diet of 80-90% fat(with some supplements), can be hard for some to understand how it
                            Message 14 of 20 , Jul 3, 2013
                              Thanks Diane,

                              I am not familiar with the protocol you mention. However, a diet of 80-90% fat(with some supplements), can be hard for some to understand how it can help so much for some. I will not say to someone who does well on 80-90% sugar (?? with supplements)that it won't help. I have read that what we ate in the womb and as children, and what our parents, and their parents ate, and a lot of other factors, made us what we are.

                              Cindy C

                              --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                              >
                              > Yep- just goes to show how each patient with Mito has very very individual needs.  From food to climate to medical interventions- what works for one, will not necessarily work for the next.
                              >
                              > I am just so grateful that what we have found repeatedly that works for our daughter, is gaining as much acceptance as the GAPS, the Paleo, the grain- free, the sugar free, the low -fat etc.
                              >
                              > We are grateful for sugar and simple carbs for Abby, without them I am not sure she would be alive. 
                              >
                              > Some friends of our's do no sugar- and they have found the same stability.
                              >
                              > Where complex carbs, proteins, and fats need to be reduced for us some need to increase!- crazy crazy disease process and human's hand's down are unique - each needs completely different formulations to get the best function.  The human body never ceases to simply amaze me! :-) 
                              >
                              > Diane
                              >  
                              > http://mitochondrialdepletionsyndrome.blogspot.com/
                            • diane neuman
                              I wish Abby could eat what I ate when she was in the womb! LOL  I was hooked on spinach, anchovies, tomatoes and pork- none that she can eat :-) Abby is about
                              Message 15 of 20 , Jul 3, 2013
                                I wish Abby could eat what I ate when she was in the womb! LOL  I was hooked on spinach, anchovies, tomatoes and pork- none that she can eat :-)

                                Abby is about a 30-50 percent simple carb(including rice,potatoes etc), usually, we use "sugar/simple carbs" to "wake up" her body to give her a quick shot of energy to handle digesting proteins and complex carbs.. without the sugar "starter" she dumps everything.  With the sugar her nutrition scores have improved amazingly!  Even on her worst days, 90 percent would be too much! LOL


                                I have followed a few families on their blogs and friends that are on high fat diets and thriving!  One day maybe the Drs. will understand enough to simply do a blood test and be able to tell us what percents of what to eat in our diet- wouldn't that make it all so much easier?

                                Whatever it takes to be healthy- right?

                                Diane
                                http://mitochondrialdepletionsyndrome.blogspot.com/


                                From: cindy_martian <cindy_martian@...>
                                To: Mito@yahoogroups.com
                                Sent: Wednesday, July 3, 2013 10:01 AM
                                Subject: [Mito] Re: dizziness,headaches

                                 
                                Thanks Diane,

                                I am not familiar with the protocol you mention. However, a diet of 80-90% fat(with some supplements), can be hard for some to understand how it can help so much for some. I will not say to someone who does well on 80-90% sugar (?? with supplements)that it won't help. I have read that what we ate in the womb and as children, and what our parents, and their parents ate, and a lot of other factors, made us what we are.

                                Cindy C

                                --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                                >
                                > Yep- just goes to show how each patient with Mito has very very individual needs.  From food to climate to medical interventions- what works for one, will not necessarily work for the next.
                                >
                                > I am just so grateful that what we have found repeatedly that works for our daughter, is gaining as much acceptance as the GAPS, the Paleo, the grain- free, the sugar free, the low -fat etc.
                                >
                                > We are grateful for sugar and simple carbs for Abby, without them I am not sure she would be alive. 
                                >
                                > Some friends of our's do no sugar- and they have found the same stability.
                                >
                                > Where complex carbs, proteins, and fats need to be reduced for us some need to increase!- crazy crazy disease process and human's hand's down are unique - each needs completely different formulations to get the best function.  The human body never ceases to simply amaze me! :-) 
                                >
                                > Diane
                                >  
                                > http://mitochondrialdepletionsyndrome.blogspot.com/



                              • cindy_martian
                                Thanks Dianne, Actually, from what I have read some do better without the fiber in foods(especially wheat), My mom was put on a diet while pregnant with
                                Message 16 of 20 , Jul 3, 2013
                                  Thanks Dianne,

                                  Actually, from what I have read some do better without the fiber in foods(especially wheat), My mom was put on a diet while pregnant with me(small pelvis), and I think took vitamins. She was a smoker, but not sure how much she smoked when pregnant. I weighed only 5 pounds, but was small like my grandmother and father( both of them may have not had enough to eat like their parents). I remember eating beans and rice a lot as a child. I am 62, born in the south.

                                  Scientists are studying epigenetics(how genes are expressed to adapt us to the environment), but they are a long way from being able to tell us individually what we need to eat for the best health. There is hope that the foods we eat now can change how our genes are expressed, and maybe your daughter may be able later to tolerate more foods. I have seen that in myself and some others.

                                  http://www.the-scientist.com/?articles.view/articleNo/15772/title/Epigenetics--Genome--Meet-Your-Environment/

                                  Cindy C

                                  --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                                  >
                                  > I wish Abby could eat what I ate when she was in the womb! LOL  I was hooked on spinach, anchovies, tomatoes and pork- none that she can eat :-)
                                  >
                                  > Abby is about a 30-50 percent simple carb(including rice,potatoes etc), usually, we use "sugar/simple carbs" to "wake up" her body to give her a quick shot of energy to handle digesting proteins and complex carbs.. without the sugar "starter" she dumps everything.  With the sugar her nutrition scores have improved amazingly!  Even on her worst days, 90 percent would be too much! LOL
                                  >
                                  >
                                  > I have followed a few families on their blogs and friends that are on high fat diets and thriving!  One day maybe the Drs. will understand enough to simply do a blood test and be able to tell us what percents of what to eat in our diet- wouldn't that make it all so much easier?
                                  >
                                  > Whatever it takes to be healthy- right?
                                  >
                                  > Diane
                                  > http://mitochondrialdepletionsyndrome.blogspot.com/
                                  >
                                • diane neuman
                                  Ty Cindy!  Interesting isn t all, it would be more interesting if everyone wasn t suffering though!   I am with you, I find Epigenetics  very interesting- I
                                  Message 17 of 20 , Jul 3, 2013
                                    Ty Cindy!  Interesting isn't all, it would be more interesting if everyone wasn't suffering though!  

                                    I am with you, I find Epigenetics  very interesting- I read one book(and a few articles) but that is about as far as I have gone trying to learn more.. In the book they talked about a village they studied and how the village had suffered a famine.  4 generations later, all the offspring carried unique mutations from the famine- so amazing!   Hopefully that will help them unlock what is making all of us so sick!
                                    Abby had a couple years where she could eat so much- almost all the allergies/reactions disappeared.  Then suddenly at puberty they all came back plus some- I am sooo hopeful if we just keep being very very careful, these allergies will disappear again!  Thanks for the encouragement- optimism and hope are the best tools I have as a Mom.


                                    Thank you so much for the link- I am an article junkie!  :-)

                                    Diane
                                     
                                    http://mitochondrialdepletionsyndrome.blogspot.com/


                                    From: cindy_martian <cindy_martian@...>
                                    To: Mito@yahoogroups.com
                                    Sent: Wednesday, July 3, 2013 5:21 PM
                                    Subject: [Mito] Re: dizziness,headaches

                                     
                                    Thanks Dianne,

                                    Actually, from what I have read some do better without the fiber in foods(especially wheat), My mom was put on a diet while pregnant with me(small pelvis), and I think took vitamins. She was a smoker, but not sure how much she smoked when pregnant. I weighed only 5 pounds, but was small like my grandmother and father( both of them may have not had enough to eat like their parents). I remember eating beans and rice a lot as a child. I am 62, born in the south.

                                    Scientists are studying epigenetics(how genes are expressed to adapt us to the environment), but they are a long way from being able to tell us individually what we need to eat for the best health. There is hope that the foods we eat now can change how our genes are expressed, and maybe your daughter may be able later to tolerate more foods. I have seen that in myself and some others.

                                    http://www.the-scientist.com/?articles.view/articleNo/15772/title/Epigenetics--Genome--Meet-Your-Environment/

                                    Cindy C

                                    --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                                    >
                                    > I wish Abby could eat what I ate when she was in the womb! LOL  I was hooked on spinach, anchovies, tomatoes and pork- none that she can eat :-)
                                    >
                                    > Abby is about a 30-50 percent simple carb(including rice,potatoes etc), usually, we use "sugar/simple carbs" to "wake up" her body to give her a quick shot of energy to handle digesting proteins and complex carbs.. without the sugar "starter" she dumps everything.  With the sugar her nutrition scores have improved amazingly!  Even on her worst days, 90 percent would be too much! LOL
                                    >
                                    >
                                    > I have followed a few families on their blogs and friends that are on high fat diets and thriving!  One day maybe the Drs. will understand enough to simply do a blood test and be able to tell us what percents of what to eat in our diet- wouldn't that make it all so much easier?
                                    >
                                    > Whatever it takes to be healthy- right?
                                    >
                                    > Diane
                                    > http://mitochondrialdepletionsyndrome.blogspot.com/
                                    >



                                  • cindy_martian
                                    Hi Dianne, I have not read any books on epigenetics, but a lot of articles. We, as well as our ancestors, are/were affected by diet, chemicals, food additives,
                                    Message 18 of 20 , Jul 3, 2013
                                      Hi Dianne,

                                      I have not read any books on epigenetics, but a lot of articles.
                                      We, as well as our ancestors, are/were affected by diet, chemicals, food additives, stress, abuse, antibiotics, vaccines, heat or cold, lack of sunshine, and more. The FDA is now interfering with feces transplants, which show promise, also worm therapy.

                                      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841828/

                                      Vitamin D is showing promise for autoimmune diseases, along with A, K2, magnesium, and some other nutrients as well as adding natural fats.

                                      I have read some say folate mutations can lead to many being more "allergic" to foods, and being more sensitive to chemicals. I am sensitive to chemicals, and show some allergic reactions at time from wheat.(I avoid it, as its nutrition is poor, and there seem to be too many problems associated with it) Now some foods such as eggs, and natural fats, I sometimes had at times some queasiness, but I stuck with those anyway. Some say this is just a healing reaction, meaning they are helping your body get rid of toxins. At any rate, I felt those were too nourishing to give up. They do not bother me now. Thanks for your encouragement also.

                                      Cindy C
                                      --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                                      >
                                      > Ty Cindy!  Interesting isn't all, it would be more interesting if everyone wasn't suffering though!  
                                      >
                                      > I am with you, I find Epigenetics  very interesting- I read one book(and a few articles) but that is about as far as I have gone trying to learn more.. In the book they talked about a village they studied and how the village had suffered a famine.  4 generations later, all the offspring carried unique mutations from the famine- so amazing!   Hopefully that will help them unlock what is making all of us so sick!
                                      > Abby had a couple years where she could eat so much- almost all the allergies/reactions disappeared.  Then suddenly at puberty they all came back plus some- I am sooo hopeful if we just keep being very very careful, these allergies will disappear again!  Thanks for the encouragement- optimism and hope are the best tools I have as a Mom.
                                      >
                                      >
                                      > Thank you so much for the link- I am an article junkie!  :-)
                                      >
                                      > Diane
                                      >  
                                      > http://mitochondrialdepletionsyndrome.blogspot.com/
                                      >
                                    • klbernard
                                      Thanks Diane! Somehow I missed this last week, and completely forgot I d even asked (so, a typical mito day, then!). Can t wait to check it out!
                                      Message 19 of 20 , Jul 12, 2013
                                        Thanks Diane! Somehow I missed this last week, and completely forgot I'd even asked (so, a typical mito day, then!). Can't wait to check it out!

                                        --- In Mito@yahoogroups.com, diane neuman <neumandiane@...> wrote:
                                        >
                                        > Here is the link- 
                                        >
                                        > https://www.facebook.com/groups/266393983440370/
                                        >
                                        >
                                        > Diane
                                        >  
                                        >
                                        >
                                        >
                                        > ________________________________
                                        > From: Karin <klbernard@...>
                                        > To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
                                        > Sent: Tuesday, July 2, 2013 8:37 AM
                                        > Subject: [Mito] Re: dizziness,headaches
                                        >
                                        >
                                        >
                                        >  
                                        > Someone mentioned a group on fb, which group? I have EDS, probable mito, don't know anything about mast cell, and would love to join. Thanks!
                                        >
                                        > Karin
                                        > Sent from my iPod
                                        >
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