Difference between revisions of "Helminthic therapy and mast cell disorders"

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{{Quote|indent}}I had to stop my HDC experience because of a bad mast cell reaction. I stuck it out four months and looking back I think I shouldn't have done that. I should have aborted it much earlier. [https://www.facebook.com/groups/htsupport/permalink/917407071648582/?comment_id=927340603988562&comment_tracking=%7B%22tn%22%3A%22R%22%7D]{{Quote|/indent}}
 
{{Quote|indent}}I had to stop my HDC experience because of a bad mast cell reaction. I stuck it out four months and looking back I think I shouldn't have done that. I should have aborted it much earlier. [https://www.facebook.com/groups/htsupport/permalink/917407071648582/?comment_id=927340603988562&comment_tracking=%7B%22tn%22%3A%22R%22%7D]{{Quote|/indent}}
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Someone who tried both HDC and NA for hair loss eventually had to stop using the HDC due to a mast cell reaction.
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{{Quote|indent}}I had success at one point with NA and HDC combined, but only for a few months. Then I had bad reactions to the HDC. I recently tried them again for hair loss and I had a bad mast cell reaction. Followed by lots of hair loss. I am now a month into NA.” [https://www.facebook.com/groups/htsupport/permalink/2392954400760501/?comment_id=2394457870610154]{{Quote|/indent}}
  
 
And another individual who experienced some improvements - although not with his mast cell-related issues - reported as follows.  
 
And another individual who experienced some improvements - although not with his mast cell-related issues - reported as follows.  

Latest revision as of 19:12, 12 October 2019

Home>Effects of helminthic therapy>Helminthic therapy and mast cell disorders

Several individuals with mast cell disorders - e.g., mast cell activation disorder (MCADMast cell activation disorder, also known as mast cell activation syndrome (MCAS). An immunological condition. [https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome Wikipedia:Mast cell activation syndrome]) / mast cell activation syndrome (MCASMast cell activation syndrome, also referred to as mast cell activation disorder (MCAD). An immunological condition. [https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome Wikipedia:Mast cell activation syndrome]) - have tried using helminthic therapyThe reintroduction to the digestive tract of a controlled number of specially domesticated, mutualistic helminths (intestinal worms) in the form of microscopic eggs or larvae to reconstitute a depleted biome to treat and prevent chronic inflammation, autoimmune disease and other immunological disorders including allergy., but have experienced mixed results.

In simple terms, mast cells are defence mechanism cells that degranulate (explode) in the presence of a perceived threat. They release 'inflammatory mediators,' i.e. substances that ramp up the body's defences. These substances include histamine, which is the driver of the allergic response, and heparin, which is a powerful anticoagulant. Even if mast cells don't degranulate, they may leak these chemicals.

Mastocyte and eosinophilEosinophils are a specialised type of white blood cell with a variety of both harmful and beneficial functions. Their numbers rise temporarily following inoculation with helminths. activation are the body's methods of trying to eradicate helminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths], so mastocytosis and eosinophilia normally increase after inoculationThe introduction of an infectious agent into an organism. [http://helminthictherapywiki.org/wiki/index.php/Helminth_inoculation Helminth inoculation] with helminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths]. However, just as eosinophilEosinophils are a specialised type of white blood cell with a variety of both harmful and beneficial functions. Their numbers rise temporarily following inoculation with helminths. numbers decrease over time, mastocyte activation may also be dampened in the longer term. And it is known that helminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths] secrete IgG4 blocking antibodies and stimulate Tregs, both of which limit mast cell hyperactivity.

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It is therefore possible that the protective effect of helminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths] against immune disorders may be the result of its molecules directly blocking the release of pro-inflammatory mediators from mast cells. [1]

The concern for someone with a mast cell mutation is that, while the eventual suppression of mast cell activity may be beneficial, the initial increase in the number of mast cells in response to helminth infection could make their condition worse. In one case study involving a young boy with cutaneous mastocytosis, this was exacerbated by a pinwormRefers to Enterobius vermicularis in the US, and to Strongyloides stercoralis in the UK. infection. [2]

However, a boy exhibiting all the symptoms of MCASMast cell activation syndrome, also referred to as mast cell activation disorder (MCAD). An immunological condition. [https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome Wikipedia:Mast cell activation syndrome], who had an initially severe response to a dose of 5 NAthe human hookworm, Necator americanus, made a remarkable recovery several months later. (Given this child's age and medical history, 3 NAthe human hookworm, Necator americanus would have been a better introduction, but hookwormA helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin. dosing was not sufficiently refined for this to be known at that time.)

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Our son is five-years-old. He has EoEEosinophilic esophagitis is an allergic inflammatory condition of the esophagus. Symptoms are difficulty swallowing, food impaction and heartburn. The disease was first described in children but also occurs in adults. It is not well understood, but food allergy may play a significant role., Ige mediated allergies, Gastroparesis, OAS, and all of the symptoms of MCASMast cell activation syndrome, also referred to as mast cell activation disorder (MCAD). An immunological condition. [https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome Wikipedia:Mast cell activation syndrome]. He began treating with HelminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths] seven months ago. We had a rough start. His first dose of 5 HWhookworm, usually referring to the human hookworm, Necator americanus made him incredibly sick. Thereafter, he had two small doses of HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta a few months apart. The HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta helped him slightly, but their purpose was to acclimate his body for a second dose of HWhookworm, usually referring to the human hookworm, Necator americanus. He received his second dose of 5 HWhookworm, usually referring to the human hookworm, Necator americanus around two months ago. Those little guys took him to task. He was extremely ill: vomiting, weight loss, refusal to eat, dangerously high fevers with sudden onset that wouldn't go down, I rushed him into his doctor's office, sometimes several days in a row. His Helminthic doctor suggested terminating the worms, but we hunkered down and stuck through it. Now, he is doing absolutely amazing. He feels better than he has ever felt in his life. The aches and pains that he had learned to live with, in his throat, stomach, chest, and legs have vanished. He is not throwing up. He still struggles a bit when he eats, but he is eating like a champion. He's eating faster and he's eating more. Most importantly, the pain that he used to feel while eating is gone. His rashes are gone. He achieved a new weight record (35 pounds! Yay!)… He has been holding strong, symptom free, for an unprecedented stretch of time now… In hindsight, I am grateful that the mainstream treatment options didn't work for him. He is now pharmaceutical free and feeling good, and that is a wonderful thing. [3]

Someone else who inoculated with far too many hookwormsA helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin. due to an incorrect diagnosis went “through hell” until she terminated the colony.

Diagnosed as having Eosinophilic Esophagitis and Crohn’s disease, this woman inoculated with 30 NAthe human hookworm, Necator americanus and ended up in hospital after taking increasingly high doses of prednisone in an attempt to treat the out of control "worm fluThe term commonly used to describe the set of symptoms sometimes experienced initially after inoculation with helminths (especially the hookworm, NA). Some of these symptoms mirror those caused by [https://en.wikipedia.org/wiki/Influenza influenza] - fever, cough, respiratory symptoms, chills, muscle or joint ache, fatigue, abdominal pain, diarrhoea, nausea and vomiting.". She could no longer even roll over and was having muscle spasms that were so severe and constant that she was literally screaming and in tears. She then required two blood transfusions and two back surgeries for 7 spinal compression fractures, the anesthaesia for which killed most of her hookwormsA helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin.. It was after this, when there were just a few hookwormsA helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin. left, that they finally started to help rather than cause harm and, for a couple of days, they were bringing down the flushing, swelling and pain. Then, after a few doses of over-the-counter Pin-X, these benefits stopped completely, but it had become clear that a very small number of NAthe human hookworm, Necator americanus might be able to help, while a larger number can have devastating consequences for someone with mastocytosis [4]

Mastocytosis has been known to morph rapidly from a smouldering state into an aggressive form with a very short life expectancy, so extreme caution is called for by anyone with this condition who wishes to try HThelminthic therapy. They would be advised to work with a medical doctor, and preferably one with sufficient experience of HThelminthic therapy to guide them through a modified approach including a very gradual introduction of helminthsAn intestinal worm which grows large enough to be seen with the naked eye when mature but which is microscopic when administered in helminthic therapy. [https://en.wikipedia.org/wiki/Helminths Wikipedia:Helminths]. One animal study revealed that even a “trickle dose” approach can result in an increased mast cell response. [5]

It has been reported that taking NeuroProtek [6] during the first 6 weeks after inoculationThe introduction of an infectious agent into an organism. [http://helminthictherapywiki.org/wiki/index.php/Helminth_inoculation Helminth inoculation] may help to stabilise mast cells. [7]

Here is a somewhat hopeful report by a mastocytosis patient trying HThelminthic therapy. [8]

This report reveals an adverse response when a subject with a confirmed diagnosis of indolent systemic mastocytosis began treatment with a rather large dose of 30 hookwormsA helminth that lives in the small intestine. Necator americanus (NA) is the only hookworm species used in helminthic therapy. Its microscopic larvae are applied periodically to the skin..

The author of this report experienced relief from some of her symptoms when she tried a different helminth and a more gentle approach to dosing.

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One thing I can say pretty unequivocally is that within 48 hours of inoculationThe introduction of an infectious agent into an organism. [http://helminthictherapywiki.org/wiki/index.php/Helminth_inoculation Helminth inoculation], I had a good and sustained resolution of bone and joint pain, even at 10 HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta every two weeks. I continue to say that even if that is all they do for me, it's pretty remarkable, and I will stay with it, so long as things continue to go well. [9] [10]

While the reduction in bone pain continued in the longer term, there was no improvement in the mast cell disease.

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I have confirmed mastocytosis. Have tried two species, unfortunately no change in symptoms of mast cell disease, or lab marker for mast cell disease (serum tryptase). Wonderful joint pain reduction, however. Unknown if I have EDS, although I suspect it. [11]

And here is a report by someone else who experienced continuing mast cell activation while taking the higher dose of 30 HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta every two weeks.

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It's almost five months now since I started HThelminthic therapy. It becomes clearer that my mast cells are overreacting and it just doesn't stop… My symptoms at the moment: Migraines are bad. Reaction to food triggers has increased. Intensity of migraines decreased. Inflamed wrists. Eczema very active. I also have histamine reactions to food I didn't have before like sweating, heat, difficulties breathing after e.g. chocolate. I love what happened to my migraine side effects, especially that my massive brain fog is gone and my mental capacities have increased and I am afraid to lose that if I discontinue HThelminthic therapy. But I don't think it is such a good idea to live that long with a worsening mast cell reaction. [12]

A further comment by the same author:

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I had to stop my HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta experience because of a bad mast cell reaction. I stuck it out four months and looking back I think I shouldn't have done that. I should have aborted it much earlier. [13]

Someone who tried both HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta and NAthe human hookworm, Necator americanus for hair loss eventually had to stop using the HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta due to a mast cell reaction.

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I had success at one point with NAthe human hookworm, Necator americanus and HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta combined, but only for a few months. Then I had bad reactions to the HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta. I recently tried them again for hair loss and I had a bad mast cell reaction. Followed by lots of hair loss. I am now a month into NAthe human hookworm, Necator americanus.” [14]

And another individual who experienced some improvements - although not with his mast cell-related issues - reported as follows.

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I have some type of mast cells disorder (undiagnosed) for over 20 years. I've hosted various species for over 4 years. I had some minor improvements with 18 months of HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta, including 6 months of 30, and 4 months of 60 HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta every fortnight. Now hosting NAthe human hookworm, Necator americanus and TTOthe ova (eggs) of the human whipworm, Trichuris trichiura. I can't say hosting has helped my mast cell disease very much (yet). However, it has helped gut problems quite a bit (that were probably associated with MCADMast cell activation disorder, also known as mast cell activation syndrome (MCAS). An immunological condition. [https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome Wikipedia:Mast cell activation syndrome]). (Edited from two posts: [15] [16])

See also

  • TGF-β1 Suppresses IL-33-Induced Mast Cell Function (A paper revealing one potential pathway via which helminthic therapyThe reintroduction to the digestive tract of a controlled number of specially domesticated, mutualistic helminths (intestinal worms) in the form of microscopic eggs or larvae to reconstitute a depleted biome to treat and prevent chronic inflammation, autoimmune disease and other immunological disorders including allergy. might help a subset of people with mast cell disorders.)
  • Two posts by someone trying NAthe human hookworm, Necator americanus and HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta (here and here) reveal that the combination of these two species was too much for this self-treaterSomeone who treats their own disease or condition without medical assistance. and caused increased anxiety for 6-8 weeks, until he stopped using the HDCHymenolepis diminuta cysticercoids (Hi-men-o-lep'is dim-a-nu-ta sis-ti-sur-koid) - the larval cysts of the rat tapeworm, Hymenolepis diminuta. [17]