• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Science Daily: Hookworm trial offers new hope to MS patients

Annikki

Senior Member
Messages
146
This is not a joke. Science Daily reports that hookworms are beneficial for multiple sclerosis patients. The good news is that hookworms seem to stop the autoimmune response in MS. Naturally, I am thinking maybe this therapy may be beneficial to CFS patients. Honestly, I would be willing to sign up for any trial testing this therapy on CFS patients. I'm optimistic this would be beneficial in ME/CFS, since the disease shares similarities to MS.

Hookworm trial offers new hope to MS patients
https://www.sciencedaily.com/releases/2020/06/200618150223.htm

"Parasitic worms could offer a new treatment hope for patients suffering from the autoimmune disease multiple sclerosis, according to experts from the University of Nottingham.

"The findings of the research, published in the journal JAMA Neurology, show that infecting MS patients with a safe dose of the hookworm parasite Necator americanus induces immunoregulatory responses and boosts the number of cells which help keep the immune system under control.

"The research was led by Cris Constantinescu, Professor of Neurology in the University's School of Clinical Sciences and a leading MS expert, and David Idris Pritchard, Professor of Parasite Immunology in the University's School of Pharmacy, who has spent decades studying the biology of the hookworm. The study was funded by the Multiple Sclerosis Society...

"The study aimed to show that the presence of hookworms in the body switches off the mechanism by which the body's immune system becomes overactive -- the main cause of MS -- reducing both the severity of symptoms and the number of relapses experienced by the patients.


"71 patients were recruited for a controlled clinical trial who suffer from the most common type of the disease, relapsing remitting MS (RRMS).


"Symptoms in patients such as vision problems, dizziness and fatigue, appear and then fade away either partially or completely, and secondary progressive MS with superimposed relapses.


"Half of the patients on the trial, received a low dose of the hookworms -- 25 of the microscopic larvae -- on a plaster applied to the arm, while the other half received a placebo plaster.


Read more at: https://www.sciencedaily.com/releases/2020/06/200618150223.htm
 

Cipher

Administrator
Messages
872
Here's more anecdotal stories of ME/CFS patients experience with helminthic therapy. I've copied them below:

  • "Personally any CFS I had is gone (although I still don't fair too well after spending a day in some office buildings with poor air quality)." (Reported in a private discussion, Apr 2012)

  • “Before I got hookworms, I was in a VERY bad way! I could only spend the briefest of periods out of my bed or chair… My basic needs were attended to by visiting carers, but just interacting on a minimal level with these invariably very cheery folk would leave me exhausted! After many years of living like this, I adopted a team of hookworms in early 2009 and, in a matter of weeks, was feeling energised to an extent that I’d assumed I’d never experience again. I still get some brain fog if I’m tired, and rely on a good night’s sleep to ensure optimum cognition. But, thanks to the worms, I no longer need to take a rest during the day, and I can now enjoy gardening, and even paint a fence, when required. I can also do exercises and use a spin bike to keep my ageing frame mobile. And, although officially retired, I’m working again, part-time. I doubt I’d get very far if I tried to run a marathon, but I can now do everything I want to do, and that’s all that matters, so far as I'm concerned.” [426]

  • ☹️ “I have had some minor and curious improvements to my health, but no improvements in my major symptoms, including my ME/CFS. Although, I must admit, my gut function is greatly improved. I used to have constant discomfort and pain there. Now, almost never.” [427]

  • “18 week update, treating for CFS/ME, chronic migraine, suspected RA. 5 NA, then 10-12 more at 12 weeks. My typical state pre-NA was 4-8 migraines per month and energy so low that I counted any day where I managed to cook food for dinner (with the rest of the day spent in bed or on the couch) as a good day. I had a step change improvement in energy at week 10, then a new surge of energy the last two days. In two days, I've cooked for hours, cleaned most of the house, done laundry and done a bit of spring pruning in the garden. A few minutes after I finished vacuuming this morning, my partner came up to the bedroom see me, expecting to find me in bed. Instead he found me outside on the deck with watercolours. My main concern today is not overdoing it to the point where I crash out for a week. I keep having to make myself sit down to rest as I have the energy to keep going. An unusual feeling for me. Also of note, it is winter in the Southern Hemisphere and typically my worst time of year for energy. Brain fog is no longer a daily problem. Greatly improved tolerance for high fructan foods.” [428] [429] [430]

  • ☹️ “I have ME and helminthic therapy did not help my general symptoms. It only removed my specific allergic reactions (so now I can have a cat and don't mind the pollen season). Nothing else (no side effects either).” (Link expired.)

  • “Two and a half years ago, one of our 12 y/o twins acquired a virus that left her with debilitating post viral complications. She was diagnosed with POTS (postural orthostatic tachycardia syndrome) and CFS (chronic fatigue). This was one very sick kid. She spent several months bed/couch ridden. Could barely walk from couch to toilet. Struggled to dress and wash herself. Her brain fog was so severe she quite literally could not do the sum 1+1, and any mental activity would result in her becoming teary with frustration and hopelessness. She was clinically depressed and completely socially withdrawn, and missed 12 months of school. Approx 5 months into her illness I inoculated her with approx 10 NA… It was about 2-3 months after this inoculation that she finally started to climb the long hill out of her illness… While she had a rocky year last year, missing a full term and several weeks here and there when she had flares or was unlucky enough to catch a virus, she gradually did make the climb out of the ditch. Today she is a powerhouse. She rises early with her sister 6am! to ride her bike to school (14kms!!) a few mornings a week, and takes an evening taekwando class…” [431]

  • “I have both fibromyalgia and CFS/ME and was first inoculated just over 2 years ago. I have found improvement, especially since it has helped with inflammation. It is not a cure for me but I have been able to slowly go off medications, get less infections, have less flare days, and recover quicker than I use to. For me 5HWs is a dose where I obtain the most benefit with the fewest side effects.” [432]

  • “My wife watched me use the helminths for my Crohn's and soon jumped on board for her CFS and allergies. She is a friggin energizer bunny now. Some days, I regret turning her onto the HDC! She was a fast responder. Her allergies went away in about 4-6 weeks and the CFS was improving at the 8 week mark. She is hosting about 15 NA and doses 40 HDC every two weeks." [433] [434]

  • “I suffer from Chronic Fatigue Syndrome (CFS) and it's almost a year ago since I took my first helminths (NA). By last summer my fatigue was progressing from mild to intermediate. It was getting to the point where I would struggle to leave my apartment and walk two blocks to do grocery shopping. I also had some issues relating to IBS, rhinitis, and eosinophilic esophagitis which made me suspect that there was an auto immune component to my fatigue. From what I read the helminths seemed to do well with that particular angle so I decided to give it a shot. For the first five months I made no other changes and I noticed a definite difference in energy. 11 months and 40 NA later I feel the best I have in years. Obviously I can't guarantee that it was all the worms, but I absolutely feel like the helminths played a big a part.” [435]

  • “At 10 weeks post inoculation with 5 NA for CFS/ME and chronic migraine, in the past two days I suddenly have many times more energy than usual for winter. Vastly more. Last winter a weekly trip to the grocery store would wipe me out to the point of being able to do NOTHING (no work, no housework, no cooking, nothing but resting) the entire rest of the week and I struggled to stay awake past 7 pm no matter how much I rested during the day. Yesterday, I cleaned the kitchen, batch cooked for half of the day, vacuumed, changed the bed linens and stayed up until 10 pm. Today I'm mopping, cleaning the bathrooms, doing laundry and cooking a bit more. This energy is in addition to the early improvements I've had in brain fog, joint pain, plantar fasciitis and increased tolerance to high FODMAP foods.” [436]

  • “I‘ve done many treatments to heal myself, so it’s hard to tell which was decicive, but hookworm definitely helped and continues to help. It’s the only treatment that I continue to follow.” [437]