Helminthic therapy and scleroderma

    From Helminthic Therapy wiki

    The scientific evidence[edit | edit source]

    Scleroderma is a disease that may only exist because of an absence of helminths.

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    The missing communication cues from the helminth to the mammalian host can cause exacerbated and uncontrolled immune responses, which in turn can cause widespread vasculopathy and fibrosis, including the pulmonary arteries. It follows that treatment with medical helminths… could provide novel means of intervention for systemic sclerosis, systemic sclerosis-associated pulmonary hypertension, and other autoimmune connective tissue diseases.

    More papers are listed on the Helminthic therapy research page.

    Media coverage[edit | edit source]

    The following videos feature scleroderma sufferer, Jane Puckey.

    The anecdotal evidence[edit | edit source]

    The reintroduction of helminths can be very beneficial for those with this disease.

    The first report is more detailed than the quotes that follow it.

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    I was on minocycline antibiotic protocol for scleroderma. My helminthic therapy (HT) supplier felt there was no point starting HT whilst on minocycline. I had only been on minocycline for 3 months and I felt good on it and I have certainly heard of many having success for scleroderma on it. I met one woman who felt in remission from it! However HT felt more like working with my body and so I chose NA hookworm. I've never regretted the decision, much improvement with skin softening and energy levels. No flares of muscle weakness in entire time hosting. (Link expired)
    • The following five posts are by the same individual.
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    It is 10 weeks since inoculating the probiotic therapeutic helminith N. americanus. I have systemic sclerosis aka scleroderma for 8 years. I have crest, with all the usual symptoms. I started to see skin softening on the back of my hands from 6 weeks. My energy is better. I feel alive and hopeful for a future which I suspected might be quite constrained. I had hard immovable skin for the last 8 years and now it's a miracle! [1] (This post includes before-and-after pictures of this self-treater's hands.)
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    Six months ago, I took 10 hookworm. I've since had about 10 more. I have had great results. Skin softening, can almost make a fist now and can drink from a water bottle without spilling water all down my front because my lips have softened and can seal around the nozzle. My muscles are not burning when I exercise and I can build fitness where before if I did more than a gentle walk I would have to rest for a couple of days. I just don't have to pace myself like I did, no myositis flares in 6 months and have weaned from 7.5 mg prednisone down to 4.5. My energy is hugely improved (better than I remember even before I got scleroderma). My raynauds has mostly gone (its summer here but last summer it still appeared). I feel like I have my life back! [2]
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    Nine month update. I have had continued skin softening which is noticeable on hands and face. I haven't had to use high dose prednisone in the 9 months hosting which is a big change, usually I need to go up to 30mg every few months. I have got down to 5 mg a day. I'm not climbing any mountains right now but am working and walking on the flat. And dancing without sneaking extra prednisone. So... all and all it's a cautious win on the myostis front. Raynaud's I can definitely claim a big improvement. The temperature is dropped here and I am not getting much: a faint blush of blue fingertips occasionally but I previously had severe reaction to a faint breeze, so subjectively I think its 80% better. [3]
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    (At 14 months) I have scleroderma which affects the lungs. My diffusion capacity was in the abnormal range prior to helminth. My lung function tests are now completely normal. [4]
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    (At 6 years) Myositis is completely in remission. Scleroderma 90% better. I'm off all steroids and immunosuppressive drugs for years now. I started with NA and now do 2 species which is even better. I added tso a couple of years ago... Small improvements at first. It took 1-2 years for remission. [5]
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    I have mixed connective tissue disease with scleroderma primary. The scleroderma symptoms have been around for almost 20 years undiagnosed in the form of severe skin issues in my hands (hardened, cracking, bleeding skin), severe GERD, and Raynaud's that was so bad I almost always had to wear gloves no matter where I was. I was diagnosed with MCTD in spring 2017, and I was a total mess. I couldn't work or take care of myself or even leave the house most days… I did my first dose of 5 Necator americanus in June 2018… The effects I saw from helminth dosing was noticeable skin softening, less dryness, less GI tract inflammation, and a huge improvement in my Raynaud’s… I saw my rheumatologist a few days ago (April 2019) for a routine check up… Basically, checking white blood cell counts, kidney function, and metabolic activity. Everything was PERFECT! My bloodwork has stabilized so much in the last year… At this point, with plaquenil, modified diet, and helminths, I'm pretty much back to a normal life. I'm generally healthy, I work full time, I have energy for a social life, I can live alone and take care of myself again, I'm back to exercising and trying to get back in shape, and my life is mostly like it was before.” (This report is excerpted from a very detailed post, which is worth reading in full!) [6] “My PCP and rheumy both tell me keep doing whatever I’m doing, because they rarely see people recover this much. [7]

    The following resounding success was reported in a private message from an individual with MCTD - a crossover syndrome that includes components of scleroderma, dermatomyositis and polymyositis, as well as lupus - who had been on hydroxychloroquine and prednisone for 5 years.

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    The worms have been working for me. I have been in drug free remission for over 3 months now, I hypothesize that other lupus-spectrum disorders will respond similarly. After all, HLA-B27 is an autoimmune marker that is shared by inflammatory bowel disease as well as lupus/MCTD.

    There are reports from other individuals with MCTD in the following page section.

    Helminth selection and dosing for scleroderma[edit | edit source]

    The human hookworm, Necator americanus (NA) is the clear front runner in the treatment of scleroderma with helminths, and TSO is providing additional benefits for those already self-treating with NA.

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    I have worked with a few people now with scleroderma. So far it seems to me that we need to gradually escalate our dose of NA to the higher end of the spectrum. And as quickly as one can tolerate. I started with 10 NA which we don't recommend - 5 NA is the recommended starting dose - but I was on prednisone so I didn't get any side effects. I just got benefits. Small improvements at first. It took 1-2 years for remission. (A nurse practitioner) [8]

    The use of NA in scleroderma patients with lung disease

    Helminthic therapy can certainly be beneficial in patients with pulmonary complications associated with scleroderma.

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    I have scleroderma which affects the lungs. My diffusion capacity was in the abnormal range prior to helminth. My lung function tests are now completely normal. (Reported at 14 months after first inoculating with NA.) [9]

    However, anyone with pulmonary disease who wishes to try helminthic therapy using hookworms (NA) should adopt a very conservative and gradual approach to dosing to avoid the possibility of developing Loffler’s syndrome. See Too many hookworms may cause Löffler’s (Loeffler's) syndrome.

    One patient with existing advanced lung disease associated with scleroderma (pulmonary hypertension and interstitial lung disease), who had enjoyed significant benefits after two initial doses of NA (the first of 5 and the second of 15) then developed Loffler’s syndrome following a further dose of 15 NA. She went into right heart failure requiring admission to hospital, termination of her hookworm colony and a course of high dose prednisone. For more detail about this case see: Do hookworms pose a threat to patients with respiratory disease?

    Others with lung issues associated with scleroderma who are interested in trying helminthic therapy with hookworms might therefore be advised to start with a dose of only 3 NA, followed not less than 12 weeks later by a further 3, or possibly 5, and perhaps using doses no larger than 10 indefinitely. If they want to see what additional effect, if any, larger doses might have, it would be advisable to make any increase very gradually, and perhaps also extend the intervals between doses. For more on hookworm dosing in general, see Hookworm dosing and response.

    See also[edit | edit source]

    Another healing modality that might provide a useful adjunct to helminthic therapy for people with scleroderma.