Helminthic therapy and mast cell disorders

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    Helminthic therapy can be helpful to those with mast cell activation disorder (MCAD) or mast cell activation syndrome (MCAS) but it needs to be very carefully managed. See Conditions that require a modified approach to helminth dosing.

    Helminthic therapy for MCAS is tricky. Needs to be done carefully with very low dose and lots of patience. But then it can help… The benefit is that my body is overall much more stable. Many daily symptoms that I had went away with HT. (Link expired)

    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 eosinophil activation are the body's methods of trying to eradicate helminths, so mastocytosis and eosinophilia normally increase after inoculation with helminths. However, just as eosinophil numbers decrease over time, mastocyte activation may also be dampened in the longer term. And it is known that helminths secrete IgG4 blocking antibodies and stimulate Tregs, both of which limit mast cell hyperactivity.

    It is therefore possible that the protective effect of 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 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 helminthic therapy. While the eventual suppression of mast cell activity by helminths may be beneficial, the initial increase in the number of mast cells in response to helminth colonisation could make their condition worse. For example, in one case study involving a young boy with cutaneous mastocytosis, this was exacerbated by a pinworm infection. [2]

    It has been reported that taking NeuroProtek [3] during the first 6 weeks after inoculation may help to stabilise mast cells, [4] but, ideally, anyone with a mast cell disorder who wants to try helminthic therapy should work with a medical doctor, and preferably one with sufficient experience of this therapy to guide them through a modified approach including a very gradual introduction of very small doses of helminths. One animal study revealed that even a “trickle dose” approach can result in an increased mast cell response. [5]

    Low dosage is critical

    Dose size must be limited in the case of anyone with a mast cell disorder. Any attempt to speed up treatment by increasing dosage is likely to end badly, as is demonstrated by the following report about the experience of someone with an undiagnosed mast cell disorder who inoculated with an excessively large initial dose of NA.

    Diagnosed as having Eosinophilic Esophagitis and Crohn’s disease, this woman inoculated with 30 NA and ended up in hospital after taking increasingly high doses of prednisone in an attempt to treat the out of control "worm flu". 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, during which procedures she lost most of her hookworms. It was after this, when there were just a few hookworms 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.
    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 NA might be able to help, while a larger number can have devastating consequences for someone with mastocytosis [6]

    Helminth selection for mast cell disorders

    Experimentation is required by each individual with a mast cell disorder in order to find the best worm species, or combination of species, to treat their unique situation.

    General guidance about helminth selection can be found on the Selecting a therapeutic helminth page, but evidence from people who have mast cell issues is gradually building to provide more specific guidance for those with these disorders.

    Response to NA

    NA are the best for me, everything else triggers mast cells. When I started HDC and later with TSO, I had a great start, then mast cell reaction explodes by the 4th dose... Personally I think I react with mast cell with the non-human helminths. TTO i didn't really notice nor get benefit. HDC and TSO I loved at first, then like I said everything turned upside down. Major mast cell reactions. (Private communication)
    My life with mast cell issues and anaphylaxis is greatly improved and much more normal because of the worms (NA). No medicine, or other methods had ever worked for me, and there is no help here in Pakistan so life was hell and I'd considered suicide. My immune system does still occasionally get angry, but it’s not as bad as it was before. Life with worms is beautiful! (Edited from several messages)
    I only have relatively mild case of mast cell activation (not officially diagnosed with MCAS). Starting out with 3 NA larvae, side effects were fairly minor for me. I'm 8 months in now and it has certainly helped keeping inflammation down and given me the ability to eat more foods but I am definitely not cured (yet) unfortunately. (Edited from this post.)

    A boy exhibiting all the symptoms of MCAS, who had an initially severe response to a dose of 5 NA, made a remarkable recovery several months later. (Given this child's age and medical history, 3 NA would have been a better introduction, but hookworm dosing was not sufficiently refined for this to be known at that time.)

    Our son is five-years-old. He has EoE, Ige mediated allergies, Gastroparesis, OAS, and all of the symptoms of MCAS. He began treating with Helminths seven months ago. We had a rough start. His first dose of 5 HW made him incredibly sick. Thereafter, he had two small doses of HDC a few months apart. The HDC helped him slightly, but their purpose was to acclimate his body for a second dose of HW. He received his second dose of 5 HW 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. [7]
    It’s now very clear I have a mast cell disorder. I have dug out of a very deep hole and am the healthiest I’ve ever been. What I’ve overcome is truly a miracle… I’ve done a ton, but the things that have helped are: helminthic therapy (NA), subcutaneous immunotherapy, sublingual immunotherapy for food and pollen, a fecal transplant, cromolyn sodium and Aimovig… You can see my original post and updates here. Overall I can not believe how healthy I am and what I’ve overcome. [8] (Edited for length)

    Someone with MCAS who found NA and TSO both very beneficial for a multitude of symptoms suggests that anyone trying NA should start with very low doses, just 1 or 2 larvae for at least the first inoculation, and possibly also the second. [9]

    Response to TSO

    TSO is generally a much more gentle helminth than NA, and one patient with a mast cell disorder reported (in a private conversation) how she experienced a marked improvement in mood 4 hours after taking a first, very small, dose of 125 TSO, and that this improvement lasted for 4-5 days. Encouraged by this, she took a further dose of 125 TSO a week later, instead of waiting for the recommended 2 weeks, and this dose precipitated extreme fatigue after 3 days, along with a return of all her disease symptoms after 6 days. There was a brief reprieve at 8 days, when she felt much better, but then she felt really bad again on day 9.

    Two weeks after the second dose, she felt well enough to take a third, this time of only 75 TSO, but immediately developed allergy symptoms, followed, the next day, by stomach pain and watery eyes. There was a partial respite on day 3, when she felt mentally calm, but she was still far from well physically, and things continued to get much worse after this. For the following week, she had a swollen belly, bad moods, aching feet and hands, and shooting pains in her legs.

    Two weeks after taking the third dose (at which point any remaining TSO would have been dying) she began to feel her symptoms slowly calming down, and this improvement continued for another 2 weeks, except that she was left with considerable dysbiosis, which required a further 2 weeks to resolve.

    And someone else has reported that TSO causes a mast cell response.

    I stick with hookworms and have TSO for emergency because I lose hookworms so easily. The TSO do cause mast cell issues for me, but nothing I can't deal with. [10]

    (NB. When beginning to escalate doses of TSO in individuals with mast cell disorders, it can be best to decrease the interval between doses before increasing the number of ova in each dose. [11])

    Response to HDC

    I tried helminths for inflammation and had to stop because of my MCAS. I think HDC made me worse. [12]

    This next report is by someone who experienced continuing mast cell activation while taking the rather high dose (for someone with a mast cell disorder) of 30 HDC every two weeks.

    It's almost five months now since I started HT. 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 HT. But I don't think it is such a good idea to live that long with a worsening mast cell reaction. [13]
    A further comment by the same author:
    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. (Link expired)

    Someone who began by taking a single "commercially prepared" HDC had an outcome that, while mixed, was overall more positive.

    I’m a 33yo female with history of allergy, asthma, PCOS and prediabetes. MCAS came on suddenly 18 months ago, was diagnosed 12 months later, and is now the main focus of treatment. The most distressing and life-altering symptom has been cognitive dysfunction.

    I tried dozens of prescription drugs, probably a hundred supplements, FMT, a “neural retraining program,” tVNS, acupuncture, all with varying degrees of success. Antihistamines seemed to make me MORE reactive the more I took them. I became unable to drive a car and had to trade my physical job operating heavy machinery for part-time desk work.

    So, a month ago, I decided to try HDC. I fished out just one white speck, confirmed under my child’s microscope that it was an HDC, and ingested it.

    I had a mild allergic-ish reaction after about twenty minutes, similar to how I would feel if I’d eaten a bit of something I don’t tolerate. About six hours after taking that dose, my head cleared up in a noticeable way and I had a pretty good day. When I shut my eyes that night there was no snow, no spinning, no static, just eyelids. Just at that moment I felt cured. I detected no fog except vague sleepiness in my brain, and, the following morning, I had no reaction to breakfast. That bounce lasted about 2.5 days, after which I returned to normal baseline, except with a sharp uptick in hay fever symptoms.

    Since those first days had been so nice, I dosed a single HDC again one week after the first dose, and had another pleasant 2-day bounce. After that, I flared rather dramatically, feeling as if I were on the edge of anaphylaxis for five days. Still, it wasn’t as bad as the reaction I had had when I tried, say, cromolyn, so I took more Benadryl and tried to stay calm. Settled into just being a bit worse than usual: more reactive to “safe” foods, brain fog that was frustrating, more edema than usual and significantly worsened constipation.

    Day by day, I noticed some interesting improvements in my neuropsych problem. Like, even though I was more reactive to food and had worse brain fog after eating, my fasting hours felt better than usual. I was often feeling positive and calm, and the thought, “This is going to work, this is going to be okay,” would pop into my head, which is really not at all like my general attitude towards treatment, as I have failed so many now. I did not dose again until three weeks after that second dose, and, again, I felt really good, close to normal, for two days.

    This month has been one of the happiest and most productive that I’ve had since I got sick 18 months ago, even though I would say most of my symptoms are somewhat worse, and some, like the hay fever stuff, are far worse. It's that my thinking — changes in which are my most troubling symptom — feels better, more normal, more like me. I am dreaming again after over a year of dreamless sleep.

    I can’t believe what a single tiny larva can do, and I’m so glad I didn’t start with a dose of five. (Edited from this post)

    Comorbidities may respond well

    Some people with mast cell disorders are able to experience benefits, but these are more likely to be seen in other conditions than the mast cell issue.

    This report is from someone who experienced relief from some of her symptoms when she began taking HDC.

    One thing I can say pretty unequivocally is that within 48 hours of inoculation, I had a good and sustained resolution of bone and joint pain, even at 10 HDC 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. [14] [15]

    And this self-treater eventually experienced a reduction in her allergies as well as an improvement in general health while hosting NA.

    I have mast cell disorder with CFS diagnosed by symptoms and lab work profile. I am allergic to everything at different levels. What I noticed was a general improvement and a reduction in some allergies especially after two years. [16]

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

    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. [17]

    Someone who tried both HDC and NA for hair loss experienced initial improvements in this condition, but eventually had to stop using the HDC due to a mast cell reaction.

    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.” (Link expired)

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

    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 HDC, including 6 months of 30, and 4 months of 60 HDC every fortnight. Now hosting NA and TTO. 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 MCAD). (Edited from two posts, including this one.)

    See also

    More about mast cell disorders and helminths

    This paper reveals one potential pathway via which helminthic therapy might help a subset of people with mast cell disorders.
    … peritoneal mast cell numbers were significantly lower in infected mice, and those that were present exhibited decreased granularity by flow cytometry and marked depletion of intracytoplasmiccgranules by light microscopy. Mast cells from infected mice had lower expression of the activation markers CD200R and CD63 and contained significantly lower basal stores of histamine... We speculate that the effects we observed on mast cells have broader implications for allergic disease. Depletion or exhaustion of mast cells through repeated degranulation could potentially serve as a mechanism of protection for other type I hypersensitivity reactions and for achieving tolerance during rush desensitization.

    More about mast cell disorders

    A very helpful factsheet explaining what MCAS is, what the symptoms are, how to get a diagnosis and how to treat the condition.
    MCAD comprises disorders affecting functions in potentially every organ system by abnormal release of mediators from and/or accumulation of genetically altered mast cells. There is evidence that MCAD is a disorder with considerable prevalence and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity of unknown cause. In most cases of MCAD, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications.

    Alternative treatment options for mast cell disorders