New Member reaching out for info/advice

Kathleen Ray

New Member
Hi, I am a 69 year old female, contracted ME/CFS 1987 after consuming gritty toxic steamed clams (likely heavy metals). Diagnosed quickly. End of being athletic, high energy, super productive human. Symptoms have waxed and waned over the years, but past 3 years have been hellacious: EXTREME fatigue, brain fog, sensitivity to smells, sounds/noise, bright light, extremes in temperature, changing weather jerks around, vertigo, loss of clarity and lucidity (derealization, depersonalization), ennui/apathy vacillating with anger, NON refreshing sleep (even if 14+ hours/day), worsening of fibromyalgia (concentrated near lymph glands-- arm pits, groin, neck), heavy legs, general weakness, PEM /exacerbated symptoms upon exertion, random skin breakouts, total intolerance to alcohol or marijuana, shakiness/wavering blood sugar (but then extremely tired after eating anything substantial).
Everything has worsened beyond comprehension since receiving 1st Moderna Covid shot 3 weeks ago, I never thought I could feel worse. I highly doubt I will attempt 2nd Covid booster shot. Mind you, many years ago I had intermittent remissions and I crave ability to get back to some sense of normalcy and energy.
I am caregiver for my brother who has Parkinsons Disease, and am becoming increasingly anxious about my ability to care for him as his condition progresses. My husband is a retired nurse, but has limited capacity to understand or be supportive.
I have been to countless "specialists"(endocrinologists, rheumatologists, etc) over the years, "money pit" of supplements, acupuncture, Chinese herbologist, etc.

**I guess I am looking for advice now about benefits/risks of Glutathione vs NAC supplement (which is better for M.E.), CoQ supplements, Rx Ivermectin (?), and the latest on any hopeful other treatments (Cortene?).
** (It knocks the stuffing out of me to even read and try to focus on all the info out there. I can barely follow the threads/comments within this site, but have found it to be the most informative and far reaching in scope. AND..Kudos to Cort Johnson for his stewardship and commitment). That said, I'll leave my woe-is-me ramblings, and hope for some positive and helpful feedback. ~K


Well-Known Member
A few years ago there was a more deadly variant of the flu. Despite the previous flu vaccine setting me back, I felt caught between a hammer and a rock: risk a setback from vaccination or have a smaller chance to not vaccinate but get a bad case of flu likely to set me even more back?

I took a vaccine and now had worse side effects then the previous time, tracking with worse severity of my ME case at the moment of the vaccination this time. I had roughly 1.5 month of sliding down with no single trick that helped me previously to even help block the worsening solidly. At best I had a leveling out at a very low level, if even so.

With so few options left and sort of a desperation, I once more decided to listen to my instincts even if it didn’t made any sense. I already was losing out to start with. Nothing that made sense helped me enough.

I woke up so often bathing in sweat, gasping for air, shaking fairly ferocious with my legs and having a ridiculous high heart rate that was too fast for me to even try to count that fast. Most often I had massive nightmares before waking up, but when awake any fear waned soon. I didn’t appear to have them due to fear or anxiety.

Then I wondered. Could these bad symptoms be trying to achieve something that was badly needed rather then ill deteriorations? So after then usual ten or so minutes it took for “my need to breathe like a horse” to calm down, I started to breathe deep and calmly. When the worst of very strong shaking of my legs was over, I did no longer try and suppress further attacks. When I felt a new series coming, I rather chose to try and welcome it. Oddly enough, I felt calming down by sort of mimicking some of the symptoms. My heart rate went down to more normal ones too. Over time I felt slightly improving and with it improving upon the routines I developed each time I woke up in such distress.

I started to get out of bed, walk to the toilet or sit straight up for some time. Later on, I had a routine of about 20 minutes each time I woke up with a series of circulation and breathing exercises in it plus some short walk on the hallway. Circulation exercises are very light exercises mainly meant to improve blood circulation. So three months later I did this every time I woke up at night, with the iron willpower to do so because it was the only thing able to clearly get me out of that downwards spiral. For several months, I had my back then 11 hours of sleep interrupted well over a dozen times. I likely had less then 6 hours of actual sleep, in really small chunks full of interruptions and breathing and circulation exercises and sitting on a chair. This pattern should have broken near any healthy person, but it clearly improved my health bit by bit. There was no doubt about that.

It seems that a night, my blood circulation primarily and breathing secondary faltered bad enough to get my body in a deep crisis many times per night. All of the bad symtomps could be seen as an attempt to rescue me from it’s devastating effects. The nightmares made me move my limbs fast even when still in sleep, supporting blood flow. The huge surges in adrenaline that went with the nightmares increased my breathing effectiveness and my blood flow being heavily prioritized to the most critical organs like brain and liver. The breathing like a horse thing was another attempt to either get enough oxygen in the blood, enough waste gas out of the blood or even an attempt for my breathing to support my very poor blood flow. Breathing has some ability to support the blood flow. That this may have been why I was breathing so fast and deep is also indicated with the fact that certain exercise to bent and stretch key arteries could in minutes to later on even 10 seconds bring down a very high heart rate to normal ones, even if it lasted only for 10 or so minutes.

To me, the above was key for me breaking out of that bad spell. Now, I don’t need to hack and slash my sleep anywhere near this as much. I frequently sleep 5+ hours a piece now without waking. I hadn’t got that since years or nearly forever, even before I got ME. It seems it has always been a part of my diminished health and health vulnerabilities.

My routine probably targets a specific vulnerability of mine, so your mileage will likely vary. Since I needed this for breaking out of a vaccine spell, it’s still a good place to post this experience. It’s not unrelated to vaccines either, as a strong surge in the production of antibodies (that sort of is the aim in vaccination) can cause blood pallets to clot and that certainly can impair blood flow (even further if it already was). Note that I had the luck to fall easy enough asleep each time I woke up safe for doing so near the morning.

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