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THOUGHTS ON HELMINTHIC THERAPY AND A RARE DISEASE CALLED MASTOCYTOSIS

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  • donnabeales
    I want to let my many friends in the helminthic therapy community know that my long 15 year health odyssey has come to a conclusion (of sorts) in June, 2014
    Message 1 of 6 , Jul 25 6:54 AM
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      I want to let my many friends in the helminthic therapy community know that my long 15 year health odyssey has come to a conclusion (of sorts) in June, 2014 with a confirmed diagnosis of indolent systemic mastocytosis.

      MY DISEASE

      Mastocytosis is a “neoplasm,” i.e. when cells grow abnormally in the body.  It is, however, not a cancer, although in some cases it can develop into one.  It is a very rare disease, but experts admit that they really don’t know the true incidence, as like me, patients may go undiagnosed. 

      In the disease, the body’s mast cells (part of the immune system) are visibly and measurably abnormal in both structure and function.

      This disease *is not* the same thing as “mastocytosis” experienced during a parasite infection.  The term is used interchangeably, but it means entirely different things. 

      The difference is this: Mast cells in a parasite infection remain normal. They increase in number and they are “activated” (release chemical mediators that fight infection) as they defend against the parasite, but that is what they’re supposed to do.

      Mast cells in the disease are thought to be genetically abnormal. The current thinking is that the disease appears to be caused by a mutation in a gene called C-Kit. 

      In the disease, aberrant mast cells continuously release hundreds of highly inflammatory chemicals into the body, such as histamine and heparin, without provocation by an infection.  These chemicals are designed to be toxic to various types of invaders into the body. As a result of this abnormal and constant onslaught, often, autoimmune (AI) diseases and severe allergy-like symptoms and intolerances to foods and common things in the environment such as perfumes, odors, etc. are present; the diagnosis of mastocytosis is frequently missed because the medical focus is trained on the other disease manifestations rather than their cause. 

      Mastocytosis is *not* the same things as Mast Cell Activation Syndrome (MCAS); please note that I will not be discussing MCAS here, except to say that the mast cells in MCAS are structurally and functionally normal—there are simply too many of them, and they are too active.

      POINTS TO PONDER

      Before I detail my HT experience, I feel the need to insert a word of caution in interpreting it.

      Keep in mind that correlation is not causation; one must always consider that diseases wax and wane spontaneously, making it difficult if not impossible to draw any conclusions in individual cases.

      MY HT EXPERIENCE

      My foray into experimental helminth usage was for a diagnosis of Hereditary Angioedema Type III.  I also have an autoimmune eye condition called Fuchs Heterochromic Iridocyclitis.  There was observed angioedema (throat swelling) on laryngoscope, but none of the laboratory findings typically associated with hereditary angioedema.  I was diagnosed with rosacea, but the facial flushing I have is also related to mastocytosis, although I have both conditions.

      Nonetheless, based on the diagnoses I was given, I researched hereditary angioedema, wrote a paper making a case for the use of helminthic therapy, and became the first patient to attempt helminths for the condition. 

      In April of 2010, I inoculated with 30 Necator americanus (hookworm).

      My HT treatment experience was very mixed.  During the initial inoculation period, I felt very good for about 12 weeks, despite mild gastrointestinal symptoms.  My angioedema went away.  However, thereafter, I had some very bizarre symptoms that had never been reported by anyone else, to my knowledge, with the exception of Moises Velasquez-Manoff, who also reported a tingling sensation during inoculation. 

      In retrospect, I’m sure some of my symptoms must have seemed implausible.  I will detail them here:

      ·         Paresthesia immediately after inoculation  (pins and needles sensation in arms and legs)

      ·         Venous ‘distention’ (possibly a form of arteritis but not diagnosed as it resolved before I could get to the doctor for examination)

      ·         Development of ‘dry eye’ syndrome

      ·         Heart palpitations

      ·         Rapid weight loss, 30+ pounds in nine weeks

      Due to these odd symptoms, which developed approximately 3 months into treatment and persisted for 6 months, I eradicated my colony with an antihelminthic drug (albendazole) in Dec. of 2010.  I have had relief from angioedema for nearly four years, which may or may not be attributed to HT.  My other symptoms did not improve with elimination of the helminths.

      In light of mastocytosis, the strange presentations I experienced during HT may make sense. Because my mast cells are frankly abnormal, they are hyper-responsive to many stimuli.  For example, I observe that my post inoculation ‘pins and needles’ sensation also occurs when I take certain meds, like antibiotics. 

      The circulatory ‘distention’ I experienced may be explainable because mast cells line the body’s vascular system.  Issues with the veins and arteries are, unfortunately, a problem associated with mastocytosis. 

      My eyes were already ‘very injected’ prior to HT. Dry-eye syndrome began three months post-inoculation.  The release of histamine and heparin from mast cells can contribute to this problem.  I have relatives with similar symptoms, and they have never had HT.

      Heart palpitations (tachycardia) are also common in mastocytosis patients.

      Dramatic fluctuations in weight are associated with mastocytosis.

      SPECULATIONS

      Here are some speculations and surmises I have made about my HT experience.

      Parasites classically cause an increase in the number of the body’s mast cells, also called "mastocytosis" but there is nothing abnormal about a healthy person’s mast cells during a parasite infection—there are simply temporarily more of them, and they activate (release chemicals) because they are trying to eradicate the parasite.

      Possibility 1—Helminths are Detrimental in Mastocytosis

      It’s speculatively possible that parasite infection may have increased the number of my abnormal mast cells, which some research shows do not naturally undergo apoptosis (i.e. die off at an appropriate time, also called “programmed cell death”) http://www.ncbi.nlm.nih.gov/pubmed/23777495.  This may possibly have contributed to my symptoms, which coincided with the timeframe helminths usually begin to take effect.  If this speculation is true, HT might be contraindicated (not a good idea) in mastocytosis patients. It’s possible that addition of more abnormal cells caused by the body’s natural reaction to a helminth infection may contribute to a worsening of symptoms. 

      There seems to be only one report in the literature of a parasite infection in a mastocytosis patient.  In the report, helminth infection appeared to worsen the condition in a child.  The parasite, pinworm, was eradicated early on in the infection (10 weeks)  http://www.ncbi.nlm.nih.gov/pubmed/21906155.

      However, this case report poses two problems. 

      First, children may sometimes have a resolution of their mastocytosis when they become adults, whereas adult cases do not resolve, so there is some question about whether or not the disease differs by age, or if it is even the same disorder http://www.ncbi.nlm.nih.gov/pubmed/18502981. 

      Secondarily, from an HT perspective, the pinworm infection in the report above didn’t persist long enough for measure of any potential long-term benefits, as it’s generally accepted that  HT takes longer than 10 weeks to achieve effect, in most cases.

      Possibility 2—Helminths Have No Effect on Mastocytosis

      Conversely, it is also speculatively possible that due to the constant influx of chemicals from abnormal mast cells that are very detrimental to parasites, I may not have retained a colony long enough to have had any benefit.

      I wonder if some of those individuals self-treating with HT and who regularly monitor their feces for ova, and who report that they can’t maintain a parasite infection may have mastocytosis.

      Unfortunately, I declined a stool test to check for colonization, so in my case this remains an unanswered question.

      Possibility 3—Helminths May Be Beneficial in Mastocytosis

      It’s important to note that in long-term infections, helminths initially “rev up” mast cell response, but after a time they eventually dampen it.  This effect is essential to their survival in the body; otherwise the continued release of mast cell chemicals, which exist to destroy them, would wipe them out.  

      However if a person’s mast cells are continually overactive, as they are in mastocytosis, maintaining a helminth  infection might be difficult, and thus might significantly affect any benefit from HT. 

      This doesn’t mean that HT benefit is impossible in mastocytosis patients; it may mean that a different species or a stepwise “trickle dosing” approach to inoculation may be needed, or both. 

      For example, it may be possible to introduce small numbers of helminths incrementally, and thus avoid a vigorous mast cell response, although one recent animal study reveals that even a “trickle dose” can result in an increased mast cell response http://www.ncbi.nlm.nih.gov/pubmed/24372091.   

      Too, non-human species, which require frequent re-dosing, might help to maintain a constant living cadre of helminths, which might eventually begin to dampen even the abnormal mast cell release of inflammatory mediators. 

      But as it stands, no one knows which of these three possibilities is correct.  Due to the risk of cancer that is associated with worsening of systemic mastocytosis, I remain uncertain about any further attempts at HT on my part.

      As you might see any argument for or against the use of parasite therapy in mastocytosis is still very much an open question.  It is therefore impossible to really say much about my experience beyond that some intellectual exploration may be instructive for those who follow developments in this form of therapy.

      FUTURE DIRECTIONS

      Personally and professionally speaking, I continue to believe that helminths are an important weapon against disease.

      I am a strong proponent of Bilbo et al.’s theory of “Biome Depletion,” and subscribe to the idea that parasites are a natural part of the human ecosystem, and that their absence precipitates disease; their controlled reintroduction in healthy people may have a protective effect against a cadre of human disease-states  http://www.ncbi.nlm.nih.gov/pubmed/21741180.

      I speculate that it may be possible that mastocytosis, and mast cell disease resulting from mutations in the C-Kit gene, might be prevented from arising through prophylactic parasitic exposure in normal, healthy individuals. 

      My thoughts about this are in the preliminary stages, but scratching the surface, C-Kit is a gene directly involved in parasitic and bacterial defense. 

      Bilbo et al. and many others posit that the body exists in a hyper-reactive state due to lack of sufficient early “training” through exposure to commensal and mutualistic organisms.  I speculate that epigenetically speaking, in the absence of parasitic infection, when a trigger is present (infection, drug, environmental toxin, other), and there is a high amount of inflammation present as is the case in many people in modern society, it is theoretically possible that there may be sufficient pressure to cause the C-Kit gene to malfunction, resulting in mast cell diseases. 

      I will be researching this further in the future.

      The problem with mastocytosis is that it looks and acts exactly like a classic autoimmune/allergic disease, and indeed, the diseases are "comorbid," that is, they happen simultaneously. I believe, but don’t really know, that some small percentage of people may have mastocytosis instead of straightforward AI disease, and mastocytosis may account in part for divergences from the typical response to HT as reported in clinical trials and personal accounts.

      To put this in context, every medical intervention (drug, procedure) has some percentage of divergence, usually meaning “side effects” but sometimes unanticipated positive effects as well, and consequently, there is always some risk present which must be balanced against any benefit. 

      Also, misdiagnosis is a significant problem in all medical interventions. It remains critical to have a proper diagnosis.

      CONCLUSION

      In conclusion, mastocytosis is thought to be a very rare disease, although the true incidence is not known. 

      My experience with HT was very mixed, with some to the good, and some not, but my actual diagnosis may, or may not, explain what I experienced during the course of HT treatment. 

      I continue to be an HT advocate (!), despite my personal lack of success, due to its potential to alleviate suffering in the human population at large.

      We need more studies on HT to better understand how helminths may affect our mast cells, and our health.

      Best,

      Donna Beales, MLIS

    • john_scott107
      Hi Donna Thank you so much for this detailed, thoughtful and balanced report! It will be very interesting to see what you’re able to discover moving forward
      Message 2 of 6 , Jul 25 9:17 AM
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        Hi Donna


        Thank you so much for this detailed, thoughtful and balanced report!


        It will be very interesting to see what you’re able to discover moving forward following this diagnosis. Hopefully, there will be some positive developments along the way, and I don’t know anyone more likely to identify them than you!


        Best - John

      • rlmkelley1968
        Donna - sorry to hear of your diagnosis. Perhaps you feel better to know the source of all your symptoms? (I was relieved to figure out MS was causing ALL my
        Message 3 of 6 , Jul 28 8:42 PM
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          Donna - sorry to hear of your diagnosis.  Perhaps you feel better to know the source of all your symptoms? (I was relieved to figure out MS was causing ALL my odd symptoms and that I didn't have 5 diseases!)

          I am an allergic type person - severe allergic asthma since age 2, worsening seasonal allergies, recent allergy to chicken skin (since I am so allergic to down), and mild (knock on wood) RRMS.

          I believe my grandfather died of mast cell leukemia, which can be a consequence of mastocytosis.  When I looked up your type of mastocytosis, I saw many symptoms that I now experience.  I was thinking that I was developing another autoimmune condition, and perhaps HT would prevent this problem, but maybe I should check out mastocytosis.  I was told that I might have eosinophilic esophogitis - another mast cell disease.  What type of doctor diagnosed you - an allergist or an immunologist?  I have access to both.

          Also - I have read one small article about how asthma is a T2 disease, while MS is a T1 disease and they may cancel each other out (perhaps having asthma is helping my MS to remain mild).  They are currently studying two asthma medications for MS, so something about asthma or its treatment helps MS.  Does anybody know how HT affects the T2/T1 balance in this type of situation?  

          Thanks!
          Rachel
        • donnabeales
          Hi Rachel, Sorry for the delay in responding, I don’t read the forum as often as I once did. In short, I made my own diagnosis, but in truth I have to
          Message 4 of 6 , Jul 29 9:21 AM
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            Hi Rachel,

            Sorry for the delay in responding, I don’t read the forum as often as I once did.

            In short, I made my own diagnosis, but in truth I have to partially credit a very knowledgeable medical friend who shall remain nameless, but who raised the possibility nearly 4 years ago as a “differential diagnosis” after I eradicated HT. However, all the dots did not quite connect then, and the clinical picture did not become apparent until over time, I grew much worse.

             I was very ill in December 2013.  I went to the emergency room after developing severe chest pain, dizziness, and while there, discovered that I was also experiencing crashing blood pressure.  Only then did the picture become much clearer. Unfortunately the work-up they did that night was for a heart attack, and I was sent home with advice to follow up with various doctors, which got me nowhere. One kind MD suggested my problem was “stress.”  (!)  I don’t know why multiple MDs ignored the obvious, my abnormal vital signs (low BP, pulse).

            I happened to attend a medical ed program on anaphylaxis in January 2014, and I made the connection when the speaker touched on mastocytosis.  A combination of eating chocolate, having a glass of wine and taking an NSAID all on the same day may have pushed my body right over the edge.  It’s possible that I was having an attack of what’s called Kounis syndrome, a heart condition related to mastocytosis, but we will never know.

            I saw an immunologist in February, but as I did not exactly fit the classic picture, I was told it probably wasn’t mastocytosis—but knowledge is power.  I had already read extensively about mastocytosis, and learned that there are all kinds of presentations of this disease; some are very unusual.  So I reached out to a national expert for a general opinion. After he responded, with his permission, I presented his email to my local immunologist and demanded to be tested (blood, urine, and when those were positive, a bone marrow biopsy).  Because of the evidence of a mast cell disorder, I received a referral to the Mast Cell Clinic at Brigham & Women’s Hospital, Boston.

            One institution missed the bone marrow diagnosis completely. I’m told by my new doctor, who is a mast cell expert, that this is all too common— apparently the disease is hard for pathologists to recognize as it is very rare. On his advice, I had my bone marrow slides sent to the Mast Cell Clinic where they made the final diagnosis.

            So getting a diagnosis can be very difficult.  Depending on where you live, I would inquire of one of the non-profit mastocytosis groups to find a doctor in your area.

            I can’t say I really feel better physically, but knowing has marginally improved my state of mind, and I now know what to think about and look for related to my disease.  I’m told that familial (family-related) cases are very rare amongst this rare disease, but they do happen.

            Here are a couple of non-profits that have been helpful to me:

            http://www.tmsforacure.org/welcome.php

            http://www.mastocytosis.ca/

            Best,

            Donna

          • Yahoo
            Mastocytosis may be rare, but I don t think mast cells issues are quite as rare as they d like to believe. I ve recently been diagnosed with ehlers danlos, a
            Message 5 of 6 , Jul 29 10:11 AM
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              Mastocytosis may be rare, but I don't think mast cells issues are quite as rare as they'd like to believe. I've recently been diagnosed with ehlers danlos, a connective tissue disorder, and there is much speculation about mast cell involvement there as well. 
              I don't know much as of just, but just a thought. 

              Rachel

              Sent from my iPhone

              On Jul 29, 2014, at 12:21 PM, "dbeales@... [helminthictherapy]" <helminthictherapy@yahoogroups.com> wrote:

               

              Hi Rachel,

              Sorry for the delay in responding, I don’t read the forum as often as I once did.

              In short, I made my own diagnosis, but in truth I have to partially credit a very knowledgeable medical friend who shall remain nameless, but who raised the possibility nearly 4 years ago as a “differential diagnosis” after I eradicated HT. However, all the dots did not quite connect then, and the clinical picture did not become apparent until over time, I grew much worse.

               I was very ill in December 2013.  I went to the emergency room after developing severe chest pain, dizziness, and while there, discovered that I was also experiencing crashing blood pressure.  Only then did the picture become much clearer. Unfortunately the work-up they did that night was for a heart attack, and I was sent home with advice to follow up with various doctors, which got me nowhere. One kind MD suggested my problem was “stress.”  (!)  I don’t know why multiple MDs ignored the obvious, my abnormal vital signs (low BP, pulse).

              I happened to attend a medical ed program on anaphylaxis in January 2014, and I made the connection when the speaker touched on mastocytosis.  A combination of eating chocolate, having a glass of wine and taking an NSAID all on the same day may have pushed my body right over the edge.  It’s possible that I was having an attack of what’s called Kounis syndrome, a heart condition related to mastocytosis, but we will never know.

              I saw an immunologist in February, but as I did not exactly fit the classic picture, I was told it probably wasn’t mastocytosis—but knowledge is power.  I had already read extensively about mastocytosis, and learned that there are all kinds of presentations of this disease; some are very unusual.  So I reached out to a national expert for a general opinion. After he responded, with his permission, I presented his email to my local immunologist and demanded to be tested (blood, urine, and when those were positive, a bone marrow biopsy).  Because of the evidence of a mast cell disorder, I received a referral to the Mast Cell Clinic at Brigham & Women’s Hospital, Boston.

              One institution missed the bone marrow diagnosis completely. I’m told by my new doctor, who is a mast cell expert, that this is all too common— apparently the disease is hard for pathologists to recognize as it is very rare. On his advice, I had my bone marrow slides sent to the Mast Cell Clinic where they made the final diagnosis.

              So getting a diagnosis can be very difficult.  Depending on where you live, I would inquire of one of the non-profit mastocytosis groups to find a doctor in your area.

              I can’t say I really feel better physically, but knowing has marginally improved my state of mind, and I now know what to think about and look for related to my disease.  I’m told that familial (family-related) cases are very rare amongst this rare disease, but they do happen.

              Here are a couple of non-profits that have been helpful to me:

              http://www.tmsforacure.org/welcome.php

              http://www.mastocytosis.ca/

              Best,

              Donna

            • nomentanus
              Very glad to see the message here titled THOUGHTS ON HELMINTHIC THERAPY AND A RARE DISEASE from Donna Beales
              Message 6 of 6 , Jun 5
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                Very glad to see the message here titled THOUGHTS ON HELMINTHIC THERAPY AND A RARE DISEASE" from Donna Beales
                https://groups.yahoo.com/neo/groups/helminthictherapy/conversations/messages/10681

                It looks like the problems that brought me here are actually MCAS. I haven't tried helminthic therapy (yet), I'm using steroids and histamine blockers at the moment. There is a facebook group "MAST Movement" which deals with mastocytosis as well as MCAS.

                If someone here isn't testing as allergic but is having all the symptoms, MCAS and mastocytosis are worth checking up; but note that many allergists are pretty much clueless on MCAS especially. 

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