Helminthic therapy and postural orthostatic tachycardia syndrome (POTS)

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Postural orthostatic tachycardia syndrome (POTS) is a disorder of the autonomic nervous system that is characterized by an abnormally large increase in heart rate upon sitting up or standing. POTS can lead to a variety of symptoms, including lightheadedness, brain fog, blurred vision, weakness, fatigue, headaches, heart palpitations, exercise intolerance, nausea, difficulty concentrating, tremulousness (shaking), syncope (fainting), coldness, pain or numbness in the extremities, chest pain and shortness of breath. Many symptoms are exacerbated with postural changes, especially standing up. Other conditions associated with POTS include myalgic encephalomyelitis/chronic fatigue syndrome, migraine headaches, Ehlers–Danlos syndrome, asthma, autoimmune disease, vasovagal syncope and mast cell activation syndrome.

The anecdotal evidence[edit | edit source]

My son, who is 15, is on the autism spectrum, is gay, overweight, fatigued, depressed, and has PANDAS/POTS and OCD, along with mast cell and allergy issues. The list is long! He started using helminths to treat the PANDAS. The first dose was 5 NA in November 2019, then a second dose of 5 in May 2020. He has always struggled with being awkward and different, and had difficulty expressing what he was feeling, but I didn’t realise just how severely depressed he had become. When he told me how much he had hated himself for so long, it broke my heart. His anxiety was off the charts. He said he was suicidal. Fortunately, a month on helminths has cleared his brain. He wakes up early now, and has lost 15 lbs. It’s like night and day, like a switch turned off and his inflammation is gone, and I am so thankful for this. I wish I had given NA to him 5 years ago. He's doing so great on them. Helminths have literally saved his life. [1]

I've been using helminths for years for what I thought was an AI disease, only for me and my kids to be diagnosed with Ehlers–Danlos. It's genetic but helminths definitely make life doable vs otherwise. NA is the helminth I have used most successfully off and on over an 8 yr period. There is no medicine that works anywhere near as well as NA. Because I have mast cell issues, HDC cause me a few problems. Same with TTO, but NA stops my fatigue, POTS, GI issues, sleep apnea, MCAS, inflammation and inter-cranial hypertension, along with the hormone issues that arise when your pituitary gets smashed by the inter-cranial pressure. Does wonders for my mental health also. Same for my kids. Anxiety is a big problem in Ehlers–Danlos in general. [2]

Long Covid since October 2021 (i.e. for the past two years). POTS/PEM standard symptoms. Started HDC at lowest dose a month or so ago. Started at 10 HDC and it felt good for a few days. Then up to 20 and things got even better. I'm still in that window of 20. Now I've placed an order for 30. This is the ONLY thing that has helped. I've tried EVERYTHING from therapeutics to supplements and treatments like HBOT (helped the rest of me but not LC), red light, SGB, etc. This past week, I've had to walk a half mile (100 yards usually kills me with PEM) for a dinner with my son, played 18 holes of golf - loaded up on steroids - , and totally did unplanned physical activity (my boat was stranded and I had to wrestle it). While I still get some PEM, it goes away and I take meclizine for that. I also take dexamethasone, but in smaller doses. Plus, I fast 16/8 + OMAD. Now, maybe it's just time, but NOTHING has moved the needle this much except the HDC!! Even if this feeling ends tomorrow, I truly believe I'm on the right path!!! I NEVER thought I would be able to do the kind of physical activity that I've done over the last week or so. It feels miraculous. [3]

12 y/o identical twin who, 2.5 years ago acquired a virus that left her with debilitating post viral complications. She was diagnosed with POTS (postural orthostatic tachycardia syndrome) and CFS (chronic fatigue) and came under the care of the Chronic Fatigue dept of the Royal Children's Hospital - who advocated only supportive care, melatonin for sleep to help the CFS, but exacerbated her POTS so severely we had to stop. They also suggested giving her ritalin to give her the get up to go to school - this seemed counterproductive to me, so we declined.

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 (maybe controversially??) inoculated her with approx 10, maybe 7 NA (hard to count under my crappy microscope, lol). This is the only dose she had and while she was very ill at the time with her other issues, didn't seem to make them terribly worse... though I chewed my fingernails off with anxiety about it - her immune system was pretty much non existent that year, and interestingly she barely showed any signs of an inoculation rash (enough to know it had happened, but you could see that her system really didn't have any fight in it - in comparison to her twin's reaction and to mine).

It was about 2-3 months after this inoculation that she finally started to climb the long hill out of her illness. While she was also taking a range of adrenal supportive supplements, following a strict eating, gentle exercise, bedtime routine to assist with biorhythm and adrenal restoration, I think the worms did have a beneficial effect. The temporal relationship was too text book to write it off.

While she had a rocky year last year, missing a full term (July to Oct) 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, takes an evening taekwando class, is in the school band, is the library captain (a year off school listening to talking books gives you a huge leg up in some areas, lol), has many friends and seems pretty stable. Only one small flare so far this year, when she required a week off school. She has been released from care by the RCH and we hope to never have to go back.

She occasionally complains small bouts of POTS, but rarely.

I am planning on giving her a further 10 NA over the next few weeks. And hoping to hell that I don't break anything! [4]