Lupus patient abandons wheelchair to run nine miles a week after getting hookworms

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Living on drugs

I have had a severe form of systemic lupus erythematosus (SLE) since 2009. It almost killed me. I was on large doses of prednisone, plaquenil, cellcept prophylactic antibiotics and an arsenal of meds/supplements to mitigate the side effects of the steroids. It took two years of pharmaceutical symptom management to stop the roller coaster ride of medical crisis and hospital admissions. There was a multi-system involvement and I had severe mobility restrictions.

By early 2012 the flare-ups were under pharmaceutical control to the extent that I could walk short distances unassisted, in my home, and, in a limited way, become involved in family and community life, with the aid of a wheelchair. But I had an ongoing battle with pain and fatigue.

Improvements from TCM[edit]

I experienced some improvement using high potency anti-inflammatory Traditional Chinese Medicine (TCM) which reduced the pain and tiredness but was costly and complicated to procure. In addition, I was well enough to join a community chorus, which brought much-needed joy to my life! I found singing to be therapeutic and energizing.

I was eventually able to reduce the steroids slightly and abandon the wheelchair. I could walk comfortably for longer distances but not without resulting pain. If money had not been a factor, I would have been content to continue with TCM because of the improvement in mobility that it gave me.

Hookworms add icing to the cake[edit]

I was persuaded to consider helminthic therapy and was impressed with the anecdotal evidence for its efficacy and the affordability of the worms. With squeamish trepidation, I started hosting hookworms in April 2015 and got a positive result within 3 months. Since then, I have maintained my hookworm colony by adding doses at 3-monthly intervals.

I now feel GREAT, with more energy than I can ever remember having, and this is just one year on! I have recently stopped taking the TCM, the steroids and the Cellcept, and have halved the Plaquenil, to 200mg daily. I am also exercising and running up to 9 miles a week. I do still get pain intermittently in the mornings, but this is easy to live with, and I get stiffness which does not last. It is a marvellous thing to experience this transformation in my life.

My hope for others with lupus[edit]

I write this is the hope that other Lupus sufferers will be encouraged to try helminthic therapy, that this treatment will become a mainstream alternative to the pharmaceutical options, and that unnecessary suffering from autoimmune disease and its drug treatments will therefore be alleviated.

By Anon (name supplied), March 2022.

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