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The GIST
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Tracy’s ME/CFS diagnosis seemed right for many years – then more symptoms showed up.
The signs that something was going on were there early. As a child, Tracy had low endurance – she’d hit the wall after about 20 minutes of tennis – and was often sick in the mornings. It wasn’t until her mid-30s, following years of persistent widespread pain, the inability to keep up energetically with others her age, and two serious car accidents, though, that she was diagnosed with fibromyalgia. A few years and a few doctors later she got a chronic fatigue syndrome (ME/CFS) diagnosis by an ME/CFS expert which she said “seemed right.”
Indeed, lab results including an on-and-off Epstein-Barr virus reactivation and the mast cell activation pointed an arrow straight at ME/CFS. Aside from low-dose naltrexone (LDN) which rescued her from pain that felt “life-threatening,” nothing much helped and her fatigue only worsened over time.
Other (seemingly disconnected) experiences also presented over the years: intermittent choking when eating or sometimes just taking a sip of water; her eyes tired easily; whenever she was given a course of antibiotics, severe fatigue would persist for weeks or months.
THE GIST
- As a child, Tracy had low endurance and was often sick in the mornings, but it wasn’t until her mid-30s, following years of persistent widespread pain, the inability to keep up energetically with others her age, and two serious car accidents, though, that she was diagnosed with fibromyalgia and then ME/CFS.
- At times, she had some odd experiences: intermittent choking when eating or sometimes just taking a sip of water; tired eyes, severe fatigue after taking antibiotics. In 2020, she began experiencing breathing difficulty (COVID was ruled out), and a new batch of symptoms showed up less than two weeks after getting the second in the series of two Pfizer vaccination shots.
- At dinner one night, she had trouble moving her tongue in her mouth. Problems with swallowing and chewing followed. Intermittent choking continued. Later would come late-day speech impairment (slurred speech), heavy and drooping eyelids, and worsened fatigue.
- It took some time, but she was ultimately diagnosed with myasthenia gravis – a rare autoimmune disease that inhibits signals from the nerves from activating the muscles.
- That brought up a question: Could she have had a milder case of myasthenia gravis (MG) which suddenly erupted after the vaccine, or did she have ME/CFS and now she has ME/CFS and myasthenia gravis (MG)?
- MG often, but not always, first manifests itself as eye weakness (strained, blurred or double vision). Other common manifestations include trouble chewing and swallowing food, frequent choking, slurred or nasal speech, difficulty raising the arms above your head, gait problems, shortness of breath, and… feeling very tired.
- Because muscle weakness can impact the diaphragm, affecting one’s ability to breathe, severe cases can require a home ventilator and can lead to what’s known as a “myasthenic crisis” resulting in a trip to the ER.
- The list of similar symptoms in MG and ME/CFS is a long one. MG, too, involves extreme fatigue, has “flares” that mimic ME flares or crashes, and poses difficulty with the mundane tasks of daily living much like ME.
- People with MG can feel too weak to simply brush their teeth or comb their hair; have difficulty showering; have difficulty rising from their chair without pushing themselves up with their arms; experience tired eyes from reading; find it difficult to chop food or cook because their arms feel too heavy or their legs are too tired to stand; are unable to grocery shop due to lack of endurance…or have trouble, as Tracy reports, “just breathing,”.
- Other MG symptoms that mimic ME/CFS, and sometimes long COVID include exercise intolerance, intolerance of hot temperatures (heat is especially challenging; even hot showers worsen MG), bright lights/sunlight, and problems with alcohol.
- Like ME/CFS, MG is a “snowflake” disease. Every patient manifests differently; the various symptoms can occur in any constellation; symptoms often fluctuate hour to hour, day to day, month to month, or year to year; flares can arise from both known and unknown triggers; and symptoms can also go into complete remission for random periods of time with no known reason.
- Interestingly, the first-line drug for MG is Mestinon, a drug that is now being used in ME/CFS, POTS and Ehlers Danlos Syndrome as well.
- MG is listed as a differential diagnosis for ME/CFS, but it was assumed that Tracy’s symptoms were all associated with her ME/CFS/FM. It was not until her problems with swallowing got so bad that her primary care physician told her to go to a neurologist that she got tested.
- One good thing about MG is that, unlike ME/CFS and FM, it has a clear diagnostic pathway and can be definitively diagnosed via a variety of tests. Because, unlike ME/CFS, the problem has been clearly identified in MG, despite the fact that it’s a rare disease, many drugs have been approved for it and more appear to be on the way. As a consequence, some people with MG are able to lead near normal lives.
- Having MG and not being diagnosed with it, on the other hand, can be dangerous because if untreated it can lead to very serious (hence the “gravis” in the name) consequences.
- While MG is an autoimmune disease (typically treated by rheumatologists), it’s actually diagnosed and treated by neurologists — and best, a “neuromuscular” neurologist — if you can find one.
At dinner one night, she had trouble moving her tongue in her mouth. Problems with swallowing and chewing followed. Intermittent choking continued. Later would come late-day speech impairment (slurred speech), heavy and drooping eyelids, and worsened fatigue.
Tracy surmised with one gastroenterologist that eosinophilic esophagitis might explain the choking, but she was not tested for it. She was, however, tested and found negative for esophageal dysmotility by an ear, nose, and throat (ENT) specialist at Mass General in Boston. But the testing took place in the morning and her symptoms typically emerged in the afternoon. At Mass General, she was then referred to an occupational therapist who suggested she could solve her swallowing and choking problem by practicing mindfulness when eating — a suggestion Tracy could appreciate since she teaches mindfulness meditation, but as it turns out, a lack of mindfulness was not the issue.
Then she got lucky. A trip to a neurologist and a simple blood test gave a name to her symptoms: she had myasthenia gravis (MG). Given her long history with ME/CFS and FM, she was a bit shocked to find that a simple test for a disease existed, but it did.
While various tests (neurological exam, ice test, nerve conduction, EMG) are used to diagnose myasthenia gravis (MG), the positive antibody result aced her diagnosis. (Eighty to eighty-five percent of people with MG test positive for it.)
Her diagnosis brought up a question: Could she have had a milder case of myasthenia gravis which suddenly erupted after the vaccine, or did she have ME/CFS and now she has ME/CFS and myasthenia gravis? (A review found that a small number of MG cases were associated with a vaccination but concluded that the number was too small to conclude that they resulted from the vaccination. Ironically, one study showed that people who already had MG and had been vaccinated did better with COVID-19 than those who had not been vaccinated.
Nobody knows, and Tracy assumes she had ME/CFS and that the vaccine triggered underlying myasthenia gravis, but the connection between ME/CFS and Myasthenia Gravis is intriguing indeed — because of the overlapping symptoms and because the drug called pyridostigmine bromide, or Mestinon, used to treat some with ME/CFS is a primary treatment for MG.
There’s a lot about MG that can make it difficult to distinguish from ME/CFS or long COVID, so knowing the specific symptoms of MG, and that unlike ME/CFS, you can be easily tested for MG, and treated for it, can make a meaningful difference in a life.
It’s time for a closer look at Myasthenia Gravis and ME/CFS.
Is it Myasthenia Gravis (MG) or ME/CFS?
Myasthenia gravis (MG) is a rare autoimmune disease that often goes undiagnosed. Many of its symptoms overlap with ME/CFS.
Myasthenia Gravis (fr. Greek for grave muscle weakness) or MG is aptly named. In MG, antibodies block or destroy the receptors on the muscles that respond to the neurotransmitter acetylcholine.
Lacking enough nerve signals to move properly, the muscles in the eyes, face, throat, neck, torso (diaphragm), and limbs fail to respond, causing problems with vision, speech, swallowing, chewing, using the hands and arms, walking, and breathing.
More specifically, eye weakness manifests as strained, blurred or double vision (often but not always the first recognized symptom, and sometimes the only manifestation of MG, known as Ocular MG). Other common manifestations include trouble chewing and swallowing food, frequent choking, slurred or nasal speech, difficulty raising the arms above your head, gait problems, shortness of breath, and… feeling very tired.
In MG, muscle weakness can impact the diaphragm, affecting the ability to breathe. As such, some patients need a home ventilator. When these muscles begin to fail completely, a myasthenic crisis occurs, requiring a trip to the ER and sometimes intubation.
Being prepared to educate ER professionals is part of MG patient indoctrination since, like ME/CFS, most ER professionals are not well educated about the disease; results for MG patients can be fatal. For example, many drugs — including but not limited to magnesium, beta-blockers, calcium channel blockers, verapamil, ciproflaxin antibiotics, muscle relaxants, and even anti-anxiety and sleep medications — can make MG worse. (If you’ve had a bad reaction to some of these drugs, it might be a reason to test for MG.)
An ME/CFS Long COVID Mimic?
Fatigue, problems swallowing, breathing, exercise intolerance and others can be found in both diseases.
MG may be confused with ME/CFS because MG too involves extreme fatigue, has “flares” that mimic ME flares or crashes, and poses difficulty with the mundane tasks of daily living much like ME.
People with MG can feel too weak to simply brush their teeth or comb their hair; have difficulty showering; have difficulty rising from their chair without pushing themselves up with their arms; experience tired eyes from reading, find it difficult to chop food or cook because their arms feel too heavy or their legs are too tired to stand; are unable to grocery shop due to lack of endurance…or have trouble, as Tracy reports, “just breathing,”. Many people with more severe ME/CFS, of course, experience these symptoms.
Other MG symptoms that mimic ME/CFS, and sometimes long COVID, include exercise intolerance, intolerance of hot temperatures (heat is especially challenging; even hot showers worsen MG), bright lights/sunlight, and problems with alcohol.
The muscle pain is not uncommon in MG. Caused by overtaxed, weakened muscles, it can also mimic fibromyalgia. While the results are not definitive, some studies have found increased levels of AChR antibodies and increased rates of polymorphisms in AChR genes in ME/CFS, and reviews indicate that COVID-19 increases the risk of coming down with MG.
Like so many autoimmune diseases, fatigue is a major complaint and, as in ME/CFS, exercise can exacerbate MG. While the textbooks say the fatigue in MG is localized; i.e. specific to the muscles that are affected by it, many patients report having generalized fatigue and even brain fog, though this is often attributed to insomnia from the steroid prednisone prescribed for treatment.
Further, like ME/CFS and long COVID, MG symptoms often improve with rest; and flares can result from surgery, infections, stress, and menstruation.
Lastly, like ME/CFS and long COVID, MG is a “snowflake” disease. Every patient manifests differently; the various symptoms can occur in any constellation; symptoms often fluctuate hour to hour, day to day, month to month, or year to year; flares can arise from both known and unknown triggers; and symptoms can also go into complete remission for random periods of time with no known reason.
Because Tracy was already seeing a specialist for ME/CFS, MCAS and fibromyalgia, it was presumed that these diagnoses alone were the cause of most of her symptoms and that what was not clearly understood was part of the usual ME/CFS mystery. Nothing more was pursued — until her difficulty with swallowing her own saliva became so severe that she could not eat, and her very caring and concerned primary care physician recommended seeing a neurologist…”promptly!”
Mestinon, Myasthenia Gravis (MG), ME/CFS, and Allied Diseases
The two diseases share many symptoms, but the Mestinon connection may be the most intriguing. Mestinon – the first-line treatment for MG – allows more acetylcholine to be available by inhibiting the acetylcholinesterase enzyme (AChE) from breaking down acetylcholine. Acetylcholine affects a variety of nerves, including the vagus nerve.
Mestinon is used off-label in chronic fatigue syndrome (ME/CFS), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension (OH), Ehlers Danlos Syndrome (EDS), and long COVID. Case reports of Mestinon use in ME/CFS date back to the 1990s and its been successfully trialed in fibromyalgia.
Exactly what Mestinon is doing in ME/CFS, POTS, and long COVID is unclear, but David Systrom believes it helps increase blood flow to the muscles in ME/CFS by triggering the release of norepinephrine. It may also improve parasympathetic nervous system (vagus nerve) functioning.
Systrom’s ME/CFS study suggests Mestinon can improve oxygen uptake, end-tidal carbon dioxide levels, and ventilatory efficiency during exercise. The Open Medicine Foundation’s LIFT clinical that contains both Mestinon and low-dose naltrexone should tell us a lot more about what Mestinon is doing in ME/CFS.
Missed Diagnosis?
The Mayo Clinic’s Essentials of Diagnosis lists MG as a disease to watch out for when diagnosing ME/CFS.
Tracy’s MG diagnosis after decades of ME/CFS/FM brings up the question of whether some people who have been diagnosed with ME/CFS might actually have MG or might also have MG. Like ME/CFS, MG is not well taught in medical school and many people with MG go years before being diagnosed. Rheumatologists, who typically diagnose autoimmune issues and often see fibromyalgia patients, can miss the diagnosis because MG affects nerves and muscles.
The Mayo Clinic’s 2021 “Essentials of ME/CFS Diagnosis and Management” lists myasthenia gravis as one of the “medical conditions that present similarly to ME/CFS”. As Tracy’s case showed, though, even the best of ME/CFS doctors may miss it. With even neurologists routinely missing the diagnosis, that’s not surprising. (“Neuromuscular” neurologists are especially helpful when seeking diagnosis.)
Who might be most likely to have MG? Here are some ideas. Note that, as with ME/CFS, symptoms can vary widely.
- People who present with any of these core MG symptoms: problems chewing, swallowing or speaking (slurred speech or nasal tone), choking, double or blurred vision, drooping eyelids, shortness of breath, muscles that tire easily.
- People who respond well to Mestinon or IVIG or people who respond poorly to drugs/supplements like beta-blockers, calcium channel blockers, verapamil, magnesium, ciproflaxin antibiotics, muscle relaxants, or any of the many other drugs on the Myasthenia Gravis Cautionary Drugs List.
- People whose symptoms manifest or worsen later in the day, a classic experience in MG.
Clear Diagnostic Pathway
The nice thing about MG is that, in contrast to ME/CFS and long COVID, a clear diagnostic pathway exists that catches most, if not all, MG cases. The diagnostic algorithm goes something like this: clinical history is taken followed by tests of specific muscle groups, and sometimes for ocular MG, an ice test. (If an eye muscle proves weak, placing ice on it will result in the muscle strengthening). If those results are positive, next comes a variety of antibody tests (acetylcholine receptor antibody (AChR), anti-muSK antibody test (MuSK), a nerve stimulation test, and an EMG test.
Positive results would end up with a clear diagnosis of myasthenia gravis.
And positive results are followed by an MRI for thymus or thymus tissue, as removal of the thymus, when present, can improve MG.
What Kind of Doctor to See?
While MG is an autoimmune disease (typically treated by rheumatologists), it’s actually diagnosed and treated by neurologists — and best, a “neuromuscular” neurologist if you can find one.
Benefits
Besides alerting a patient to a potentially dangerous situation, being diagnosed with MG does open the door to new treatment possibilities.
While being diagnosed with an autoimmune disease might seem daunting, it could have some advantages. Unlike ME/CFS, a suite of drugs have been FDA-approved to treat MG.
Longstanding proven treatments including prednisone, mycophenolate mofetil (Cellcept), azathioprine (Imuran), IVIG, plasmapheresis, and pyridostigmine bromide (Mestinon). Plus, new-and-improved, more targeted treatments have arrived in the last several years, including eculizumab (Soliris®). efgartigimod (Vyvgart®), ravulizumab (Ultomiris®), rozanolixizumab-noli (Rystiggo), and zilucoplan (ZILBRYSQ®), and research trials are currently underway involving stem cell transplantation and gene therapy.
Ultimately, getting diagnosed with or ruling out MG is critical because to have MG and not be diagnosed may risk death. As the neurologist who diagnosed Tracy explained: “myasthenia means ‘muscle weakness’ and gravis means ‘grave’ — because that’s where it used to put people and can still put you if you go untreated.”
Today, most MG patients improve with treatment, and many even return to “normal” lives.
Why so many drugs for MG but not ME or Long COVID?
Why does a rare disease like MG (70,000 – US) have so many FDA-approved drugs while a much more prevalent disease like ME/CFS (@3 million US) has none? It’s not because ME/CFS is being ignored. It’s because we know exactly where the problem lies in MG (the neuromuscular junction) and we don’t know that in ME/CFS.
That’s allowed researchers to uncover a wide range of autoantibodies that are attacking it, to be able to subset patients more effectively, to develop a variety of immune-related treatments for it, and to reduce the percent of false negative diagnoses. In short, finding the explicit target makes it profitable for drug companies to develop drugs even for a rare condition like MG.
Thanks to Tracy for her help with this blog.
Resources
- Myasthenia Gravis Foundation of America
- International Consensus Guidance for Management of Myasthenia Gravis
- Myasthenia Gravis Cautionary Drugs List
Thank you Cort and Tracy, this is really interesting!
I often look into diseases that have overlapping symptoms with ME in the hope it might be one of them that’s treatable! I have a lot of symptoms that crossover with Myaesthenia Gravis (although I don’t think it fits for me) so when I was prescribed Mestinon for my POTS, I was hopeful it might work for me. Unfortunately it gave me some mild allergic-type symptoms (small itchy rash on my hand, feeling my throat tighten a bit, tongue swell) so I stopped after just one 30mg dose. The annoying thing is that I actually felt better on it that day but didn’t feel safe taking more.
I was surprised because I had some nutrigenomics results reveal a mutation that means I’m low in choline (homozygous PEMT) and I realised that antihistamines (which I take for MCAS) block acetylcholine, so I figured Mestinon would be just what I needed. Seems really contradictory so I’m interested in seeing what others comment about MG and Mestinon too!
O
MG !!
Chips, while I am not a medical professional, and I encourage everyone reading to keep that front-of-mind,
I have been studying covid since March 2020,
therefore viruses,
and by accident I saw that a friend had been diagnosed with both
CFS
and
FIBRO.
Therefore, I studied CFS/and/Fibro since August 2020,
After that I latched onto this incredibly informative website !
Please be cool as I respond to a few of your statements, since I have already been considering causes for 3-4 years. Thank you for that.
You said:
” I was hopeful it might work for me. Unfortunately it gave me some mild allergic-type symptoms (small itchy rash on my hand, feeling my throat tighten a bit, tongue swell) ”
1. That sounds like Anaphylactic shock — or SERIOUS ALLERGIC OVERREACTION to something. That is a serious allergic response.
Most notably it occurs among people allergic to shell-fish (crustaceans) and especially to shrimp.
On that basis, then, TOTALLY your spider sense made the correct choice to
back off of MESTINON.
AND:
I am not encouraging you to go back on MESTINON,
but
instead:
for you to ASK, or for your doctor or allergist to ask: why would increased efficiency of my Acetylcholine Receptors, or at least, DE-creased efficiency of the acetylcholinesterase…
leading to longer effect of Acetylcholine in my immune system….
trigger Anaphylactic Shock?
Rash, throat tightens, tongue swells… these are SERIOUS allergic reactions
and
you made, in my inexpert opinion, your personal best-knowledge, most aware, of your own body in that moment,
BEST DECISION.
You know you BEST .
2.. I am an allergic person, also having mental wellness issues, but being 90% mentally not only back to normal,
BUT ALSO
MORE fearless than ever before,
(thank you Jesus, and also thank you to those experts found online by my research on this)
2. Allergy is closely related and controlled by:
Histamines
Mast Cells
Serotonin
and various HealthRising blogs have mentioned
Mast cell Activation as possible contributing factors
to CFS/ME.
WHY WOULD THIS MATTER TO YOU:
a) you felt better on that day.
b) based on Cort’s more recent articles, the immune system seems to be working OVERTIME in CFS/ME,
most specifically the T-cells becoming fatigued
and while they may actually hog energy resources from the rest of the body
because they
Wrongly
are working way too hard against SELF.
CONCLUSION:
You are deficient, you said, in choline absorption or, before that, digestion.
THIS IS MAJOR.
Why?
Because in order for your motorneurons to function properly,
telling the skeletal muscles to flex (for one millisecond at a time, and then clear away),
you would need to have PROPER and normal AcetylCHOLINE production in your
Moto-Neurons (nervous system that brings messages from brain to muscle)
CORT talked about Rob Phair, and Rob Phair talked about AceytlCoA (acetyl co-enyzme A) being stored instead of used when you try to exercise.
The question is why.
The other question is:
Why would my immune system do that with my AcetylCholine.
Choline is a B-vitamin.
for our intestines to
properly
digest and absorb all of our needed nutrients,
1. They need to extract B-vitamin Choline from our food
2. They need to extract Acetate from our food
3. the intestine supplies its OWN energy source (similar to photosynthesis
in plant leaves, in a way…) in BUTRYATE, which is produced
BY
your own intestines
FOR your own intestines.
IF your intestines were to experience intestinal dysbiosis for a medium to long term,
for many possible causes,
Then
a) the gut itself might have INSUFFICIENT energy (butyrate) to then extract
Choline and to send Acetate to the bloodstream.
Acetylcholine is constructed, right in the Motorneuron, right beside your muscles,
from Acetate, or more directly, from Acetyl Co-enzyme A (CoA) which Rob Phair abbreviates often as “CoA”,
and then he talks about the CoA being REMOVED by the mitochondria in your muscle cell and fromother cells in the brain, once produced !
I would say, in my DEFINITELY, POSITIVELY, NO DOUBT ABOUT IT:
UN-MEDICALLY-QUALIFIED point of view that:
1. CFS/ME is an autoimmune disease which can be reversed if the causes are reversed
2. The causes of CFS/ME are AUTO-IMMUNE SYSTEM based. Yes, we have an immune system and an Auto-immune system, one of the purposes of which is to HALT cell replication
IF the cell checks and balances were FAILED during cell division. This means: to not allow cancer to continue replication.
Or
to self-heal cancers while they are just babies.
It is wise prevention of cancerous-cell survival
3. Our innate immune system reaction may persist, instead of
deferring to our Adaptive Immune System to create and multiply an
antibody and TURN OFF the innate reaction.
FINALLY:
4. If you took mestinon, and it IMPROVED your energy or malaise,
then
a) something good happened, and we have to assume that that good thing was
COUNTERACTING the failure of Acetylcholine to empower the cell.
b) Notwithstanding that positive effect,
it also empowered a self-immune response, or over-reaction which I called anaphylactic shock.
I guess that pro-phylactic means preventing inflammation (tightness, swelling) from getting out of control
while
ana-phylactic means PROMOTING it to get beyond control.
To put this in perspective, then,
A good thing happened for the same reason as a bad thing happened.
Good things are good things.
Bad things should be stopped.
Therefore,
WHAT DID THE GOOD AND THE BAD reaction have in common? as their support
Let’s assume that the bad reaction is unreasonable, but that it is based on a very reasonable design. THEN, we can look at the proponent of both of them as
healthy
but that the bad reaction, while from a good instinct, was an OVER reaction.
At that point, I encourage you… as someone with no credentials whatsoever,
to find out: what system or peptide, perhaps, or amino acid, facilitates BOTH?
Okay. Given that good is good, regardless and does no harm,
what problem allowed a good stimulus to encourage over-reaction?
And when you know that, when did it start, and then what can we do to
under-OVER-react? There must be something.
If you figure out THAT, maybe you will have solved CFS/ME. Imbalance
As my MCAS and seasonal allergies have worsened lately my allergist has prescribed increased dosages of cromolyn sodium, ketotifen, Allegra, Allegra D, Flonase. Are you suggesting that increasing these allergy meds can make mestinon decrease its ability to treat muscle weakness?
Some antihistamines are anticholinergic, which means they block acetylcholine. So if you have acetylcholine problems like MG, drugs like Benadryl and Dramamine will make your symptoms worse. Mast cell stabilizers like Nasalcrom are OK; I use it every day. But I also use Children’s Benadryl at night during allergy season (It works the best) and take a bit more Mestinon to counteract the anticholinergic effect.
Not all antihistamines block acetylcholine; a quick google search will tell you which ones do.
Judy – Thank you for sharing this info. My allergy meds are not considered anticholinergic so that’s good for my MG. Any idea why mestinon may be losing its effectiveness for me? I take 60mg three times/day.
I had a written reply that disappeared again when I tried to submit. Here’s the gist of my previous comment:
Taking too much Mestinon can produce symptoms that are similar to taking too little. The one way your doctor can be sure is with the Tensilon test. I had one as part of my diagnosis and I clearly responded to the drug.
You mentioned you’re seronegative. But antibodies are tricky and aren’t always active when the blood is taken for testing. I did this for years with thyroid antibodies even though my thyroid function continued to diminish over time. Eventually the antibodies were found, confirming Hashimoto’s. But by then, I’d lost most of my thyroid function.
You might want to talk to your doctor about Tensilon testing and re-running the antibody tests.
Hi Judi – The tensilon test was banned in US 2018 unfortunately so I missed the window to try it. I might try taking a smaller dose of mestinon to see if that has any benefit along with retesting for antibodies again. If you think of anything else that might help me please reach out. Thank you!
I had no idea the Tensilon test was banned. That sucks. But I agree that trying a smaller dose of Mestinon is worth doing. And the only other thing I can think of is to make sure you’re not getting anticholinergic agents or CNS depressants without your knowledge. That will mess up Mestinon dosing for sure.
Hi Christopher,
Thank you so much for your reply and taking the time to try and help me, it’s really kind of you!
It’s interesting my you mentioned the connection to low butyrate as that was actually found in my recent nutrigenomics test!
It’s certainly a head-scratcher to figure out how to make these things work together in harmony rather than bringing on an over-reaction like you say. I saw some other helpful comments below too and I’m thinking of trying switching to an antihistamine that doesn’t block acetylcholine and if all goes well then perhaps I’ll see about trying give a lower dose of the Mestinon a try if I’m feeling brave – my doctor thought it could be worth it given the possible allergic reaction was mild. Hopefully that might get the balance right!
Thanks again!
I have another friend who has a decades old MECFS diagnosis and is in the process of being diagnosed which what is almost certainly MG at the moment – positive ice test, drooping eyelids, positive response to mestinon and prednisone. It had been missed for decades until she figured it out herself from seeing things online and took her suspicions to her doctors and asked for official testing. I definitely wonder how many others there are!!
Interesting. In the very early days I questioned this condition for myself, and the attending doctor lectured me about looking for horses not zebras. I wonder can Ii be bothered trying again?
Same here. I really dislike seeing my gp, or any of the others I tried. They sometimes help me though, especially with non ME things. Anyway I saw I can do the acetylcholine test pretty cheaply without seeing a GP so I will give that a go.
In case it’s helpful to anyone else, acetylcholine also comes up in narcolepsy and pyridostigmine bromide (Mestinon) can be helpful there, too.
I’ve been taking for it for about a year. It’s improved major motility problems, physical stamina, POTS and wakefulness (narcolepsy type 1). Acetylcholine is important in REM sleep, which is problematic in narcolepsy. I’m told that sleep specialists use extended release rivastigmine patches in REM sleep behavior disorder, too.
Unfortunately, there don’t appear to be any good 24-hour formulations of pyridostigmine in the US, so I take pyridostigmine every 6 hours, because my sleep specialist suggested it might help consolidate REM sleep. The extended release pyridostigmine doesn’t actually last a full 12 hours, and doesn’t have very predictable absorption, so I’ve stuck with the regular formulation so far.
Thanks for info Cort and Tracey. I feel for her. Yes many overlaps and it does make one wonder how many are out there with MG?
Sadly in some subsets of us the vaccine has triggered auto immune conditions to develop so my doctor informs me. I can’t help but wonder if the last vaccine I had triggered the worsening of all things ME/cfs related and the development of diagnosed Trigeminal neuralgia? Have you heard of any folk with both Fibro and ME/cfs developing this? Curious.
Linda, please search Dr. Terry Wahls who started with multiple sclerosis (MS) and developed more and more autoimmune conditions as time went on.
She is definitely on OneCommune.com.
She has devised the Wahls Protocol diet which is a modified Paleo diet modified with additional supplements.
She cured herself and went back to normal life.
She STARTED with Trigeminal Neuralgia, which my 92-year old mother has,
but she developed debiliting and seemingly terminal MS following that.
No, not a 100% confirmation to your question, but an excellent person to learn from.
I would have to say, after 4 years of research analysis, that there is no one static order of operations for these autoimmune conditions’ development.
What most folks don’t know about terry whals is, she was lucky enough
To also get preferential treatment,I suspect because she is a doctor herself. Her preferential treatment was rounds of chemo….she continues to keep that part of her treatment quiet
Do you mean chemo for cancer?
What did she have chemo for? I don’t recall her mentioning that she had cancer.
I read that she did chemo on an M.S. site when her story broke.ive read it more than once…can’t verify though so maybe I should keep my mouth shut.
If you read it again: no, actually, I do not want to be misled or to mislead any of you.
If you do find the claim, please reply to this post. Thank you Buckey.
I too try to discount Doctors who then turn to being a company that markets its own BIAS on what we need.
I found Dr. Wahls to be genuine, and overwhelmingly sincere in her testimony. That is why I trust her conclusions.
I am poised to stop being the fool if you have found that she received chemo which would have shut down
a) her terminal MS
and
b) her trigeminal neuralgia
I am not here to shut you down.
But if you have proof that she was false, then i will not want to trust her.
I also think she seems to be a straight shooter
I will try finding it….it was a long time ago and like the rest of us, not a great memory.
I think she has,somewhere, a Q and A
Linda, I am aware that I previously responded to your thoughts.
The following is what your thoughts trigger in me, a person who cares about all of you, and about all of those I know and love, who and wants to contribute to your solving ME/CFS, as well as preventing it:
People are decrying the vaccines because the vaccines triggered autoimmune reactions.
That was in a VERY controlled situation, in which the reaction would not be as damaging as CONTRACTING the virus.
Do you feel that a person is better off to CONTRACT THE VIRUS?
I have noticed that the GLOBE is not wearing masks for more than one year, except for some scattered individuals in my capital city of Canada who probably are immuno-compromised and can not afford to NOT wear a HEPA mask. And I agree with that choice.
The questions regarding the vaccines are multifold:
Q1. Is a person likely to intake the vaccine but never contract Covid? Would they then be unnecessarily exposing themselves to something which would cause an immune overreaction (cytokine storm) which they could have avoided?
A1: I doubt that one can avoid Covid entering their lungs forever.
One day in a peaceful time they will trust a friend whose health they can not
verify… and they may intake the actual virus.
Q2: Which would cause a MORE intense cytokine storm? Just multiplying a spike protein?
or actually contracting the full-meal-deal virus’ multiplication? The full virus would be much more information against-which to form an antibody.
A2: The vaccine strategy is an attempt to pre-introduce the coating of the virus to the immune system, without the FULL PAYLOAD of complete-virus UNLIMITED replication occuring.
——–someone please correct or educate me if I am lacking here:
The chances of life “going back to normal” without individuals being ALWAYS confined in masks are miniscule. Everyone wants to go back to no mask.
The chances of people who wear stingey N50 blue hospital masks whose effectiveness is that they stop only 50% of antigens whose size is SMALLER than their smallest pore (Fauci put on 20 or so, one on top of the other)
halting contraction of the virus is pathetic…
compared with searching out N95 (%) efficient filter masks, even if then there is a world-recall back to China of the masks because they SAID 95, but it’s really only 92% effective.
HERE IS THE MAIN COVID…or any previous virus…. FACT:
the more you get in a few breaths, the greater the number in your blood,
at which point it is an exponential numbers game. A race to see who can produce more virus or more antibody first to neutralize it.
The Innate Immune response is being blamed for CFS/ME being chronic.
Of course. This makes sense.
The Innate immune response of macrophages absorbing ALL intruders in an indiscriminate manner is NORMAL, until an antibody has been formulated and multiplied.
the main problem in COVID cytokine storm or even, I deduce, in any of the pandemic flu viruses of the 20th century,
is that in a subset of victims, 1-2% of the North American population,
the Innate Response did not defer to advent of the Antibody creation. There is also something called
“low-quality antibody creation.”
Immunology doctors have a term “haplotypes” which means really half-types.
If the haplotypes are poorly made because the immune system is weak from lack of rest or from poor nutrition, or from excessive stress in life (sapping the nutrition), then the THYMUS may adopt the new antibody, but the antibody may be SOMEWHAT inneffective, or only half-effective.
The very important and unfortunate upshot of this situation is that
a) the Thymus is CONTENT that “we have an antibody already for that particular antigen”, while the Antibody is much less than 100% successful in identifying the intended antigen.
This is basically a case of either malnutrition, or of temporary nutrient deficiency, and often because of lack of rest, or because of excessive social stress.
————-
This last point is very important in light of recent comments on HealthRising:
A woman said that she had her Thymus removed. She quoted other as saying that ‘after a certain age’ [about which they were not certain], “the Thymus becomes less important”, or did she say that the medical people said it was unneeded?
CON:
you would lose numerous antibody definitions that you will then need to create fresh.
PRO:
If your haplotypes had been defective when created against the insult of the pandemic virus (flu or corona)
then this would NOW ALLOW new antibody creation against them
I have /got to figure/ that if poor quality antibodies are failing to identify ALL of the attacker, on a chronic basis, then…
if I remove my Thalamus, the incorrect bias will end. There will no longer be
a member in the Antibody department that sees that pandemic virus and says:
Ya, I’ve got this. Because it has NEVER had this.
Acetylcholine in REM sleep. Thank you Chan
You are correct about the unpredictable nature of extended release Mestinon. I can still remember in my early childhood when my dad rushed my mom to the nearby hospital/ER because, very suddenly, she could hardly breathe or walk. The extended release capsule dumped too much Mestinon into her system too quickly, and created a cholinergic crisis. She never took that form of Mestinon again.
You said something very important that I would like to underline:
that Mestinon has improved “… physical stamina, POTS…..”
Just those two…
In MG there are fewer a7 nAChR receptors available to receive Acetylcholine (ACh)
so to me that is another addition to the case for a patient perhaps getting their doctor to prescribe Mestinon for CFS/ME, as one recovery story mentions.
As for POTS:
it is a vascular dysfunction problem. I believe that the same thing that causes hypoperfusion during physical exertion also causes POTS.
That would be: that a lot of a7 nicotinic receptors of ACh have been lost or lost function in CFS/ME. As a result, the vessels are not capable of contracting to pump enough blood back to the heart during the heart preload interval.
This is why
1. blood pressure may be found to be low
2. blood can not be shunted enough to focus the oxygen and glucose to the muscles exerting during exercise
3. … and as a result the heart must beat faster to attempt to get oxygen and glucose there faster, since “more blood” is not working.
So you arrive at POTS, when a whole lot of blood should be shunted back to the heart when you get up, but it is not.
COVID is known to mainly affect the vasculature but also organs. I maintain that flu pandemics cause the same type of systemic vessel damage.
I have Myasthenia Gravis. Only diagnosed early 2023. I have a similar background story to Tracey. A long story. Fluctuating symptoms. Diagnosed with fibromyalgia over 30 years ago and CRF. I was also diagnosed possibly with GBS aged 7 lost use of arms legs with weakness no definite diagnosis though. .
After being diagnosed with acute myeloid leukaemia in 2016 I survived treatment and remain in remission. All of my fatigue and weakness symptoms worsened after treatment and by 2021 worse than ever. It was attributed most likely to be due to post chemo fatigue due to intense high dose chemotherapy.
I had an intermittent drooping right eyelid and my right eyebrow would raise at the same time. It was subtle at first and would come and go. I kept forgetting to mention this to my GP considering all my other health issues dominating the appointments. Late 2022 my eye symptoms worsened after COVID so I took a series of selfies to show the GP. By then my breathing issues had worsened, weakness was all constant and it affected everything I did. I knew rest helped so restored myself as much as possible by constant resting, my GP referred me to a neurologist. MG was suspected then. My diagnosis took a while because I don’t test positive to the known antibodies for MG. There are unknown antibodies so my diagnosis is seronegative generalised MG. I respond to Mestinon but and have recently started IVIG monthly infusions. It’s a long hard road but seeing a gradual improvement. It is very unpredictable though. I can flare suddenly.
My story is so similar to Tracy’s! I was diagnosed with Intracranial hypertension, migraines and fibromyalgia in 2015.in 2018 it was MCAS and ME/CFS. In 2021 after my first Covid vaccine, I had a severe reaction and ended up with viral meningitis and spent 5 weeks with a PICC line on antiviral medications.
My illnesses all got worse and I never really recovered. The fatigue was relentless. I went to a Long specialist in my area and he really listened to my struggles. He did a full battery of tests. Turns out I had the antibodies for autoimmune generalized Myasthenia Gravis. My neurologist started me on Mestonin and a couple months ago I started infusions with Vyvgart. I can’t really say that I’ve seen much improvement.
I struggle with double vision, fatigue, choking on liquids, muscle weakness and sometimes I don’t breathe fully.
I still have all of my other illnesses. Treating MG has not improved my ME/CFS.
We all know the full impact of the COVID-19 pandemic will take years to unwind. Many people have developed autoimmune diseases, dealt with viral reactions like shingles, etc.
I’m no expert, I am just overwhelmed by illness and I can’t work anymore. I hope I get better, but there are days that I lose hope.
Sarabeth,
Please… what *specific antibodies
contributing to
generalized MG?
Normally MG testing will show an antibody against the a7 nAChR receptor site for acetylcholine to trigger muscle twitch, maintenance of memory, and staying power in an emotionall trying experience.
Thank you
This a7 receptor is also crucial in Endothelial VSMC’s (vascular smooth muscle cells) to give an equal and opposite reaction of relaxation in the Renin-Angiotension-Aldosterone System after Ang2 constricts the vessels.
ACE2 to convert the Ang2 to a relaxant, is blocked when COVID dominates a majority of ACE2 receptors. ACE2 stands for Angiotensin 2 Converting Enzyme.
Temporary hypertension results.
My antibodies tested positive for binding.
I hear you.
They tested positive for binding to WHAT?
Ach receptor muscle binding antibodies.
It is the standard test for MG, binding is one of the 3 types of antibodies tested.
based upon my 4 years of research
(or should we say: debunking research and finding beaningful commonalities)
about Covid 19 to start with, and then me attempting to find commonality between its effects… which turned out to be long-covid
and what we see already in Long-Haul survivors of autoimmune disease.
At this website, at this time, let us call it, and i agree survivors of:
Long haul flus or long-haul SARs or MERS but also, and not less-importantly,
Spanish Flu, which recurs each flu season, but mutated, and the second-most or even the MAJOR recurring and mutating FLu virus:
Hong Kong Flu
CORRECTION of typo:
*not which but *whose commonalities turned out to be long covid…
To summarize: the 2 most prominent FLU strains coming back each year,
according to recent research ARE:
1. 50% of them are 1968 (my birth year) Hong Kong Flu pandemic virus
2. less than the other 50percent, but dominating the other half, are
SPANISH FLU variants which have never gone away.
I am prepared to send you links to prove the research on those 2 points
Thank you for covering this topic! I had ME/CFS for 21 years before my Myasthenia Gravis symptoms started. However my weirdly random symptoms went undiagnosed for 10 years, in part because my ME/CFS was blamed. Also because I’m seronegative (none of the currently recognized autoantibodies) and my first Repetitive Nerve Stimulation (RNS) and Single Fiber EMG (SFEMG) tests were both negative despite having MG.
There is A LOT of ignorance about MG (especially seronegative) among doctors even some neuromuscular specialists… but the difference is that they probably had one lesson in medical school on MG, When they get no lessons on ME/CFS. But they don’t usually show disdain for MG patients. The other reason it’s called the snowflake disease — besides everyone presenting differently — is that we all respond differently to different medicines. So no treatments help all patients, and it can take a while to find a combination of treatments that works.
For anyone who wonders whether they could have MG, join the Myasthenia Gravis Facebook group. It’s a very educational and supportive group!
My mom had MG and took Mestinon. I was diagnosed with fibromyalgia over 30 years ago, followed by ME/CFS diagnosis a few years later. But like my mom, I’ve always had the main symptoms of MG but tested seronegative several times with two borderline single fiber EMGs (not normal, but not solidly conclusive for MG).
I’ve taken Mestinon for years and can’t function without it, especially when taking antihistamines for hayfever. Alcohol is something I can only have in extremely small amounts; one 12 oz can of hard seltzer produces drooping eyelids, sagging facial muscles, and difficulty getting deep breaths.
My neurologist prescribes Mestinon offlabel to other fibro patients like me, who also have borderline EMGs and classic symptoms. Makes me wonder if there’s something genetically messed up with our acetylcholine receptors and fibromyalgia is the result.
There are also genetic forms of Myasthenia called Congenital myasthenic syndromes which can run in families. Also, if you can find a seronegative-friendly Myasthenia Gravis specialist (usually at teaching hospitals), they can diagnose based on clinical symptoms, response to Mestinon and/or ice pack challenge results even when all the tests are negative. Four years after my MG symptoms started I was given a Repetitive Nerve Stimulation and Single Fiber EMG and was told I definitely didn’t have it because they were negative. Six years later when I was evaluated by a MG specialist I saw the records from that other Neuromuscular specialist. It said “suggestive of, but not diagnostic for, MG” and it was blamed on my ME/CFS when in fact I did have MG and they didn’t know you could have negative tests and still have it.
Ironically, after 6 years of worsening symptoms when I finally found a seronegative–knowledgeable doc who told me I could still have it even if the tests were negative — by that time both muscle tests were robustly positive. SFEMG tests in particular are only as good as the doctor who does them.
Diane R,
or if you are also Diane Rose,
This message is directed to you:
If it has not yet come across in blog articles on this site, which are EXCELLENTLY comprehended, synthesized and then given in a GIST form:
Medical MD training trains students to look for:
QUICK FIXES.
They are trained to be so in Residence, and given 24- or more- shifts to prove that they can give a knee-jerk memorized response in 15 minutes or less.
This means that our canadian doctors are NOT trained to think outside the box, since: that would take extra TIME.
So we have to ask: THEN who gave us research updates and improved routines for these treatments?
I will tell you who:
RESEARCH PhDs who CAN afford, monetarily, to spend more time assessing.
IF… and only IF your gp also tries to keep current on common diseases,
their diagnosis, and new treatments for them,
…then… you might get intelligent, forward-looking advice, when they advise you as to what to do.
But…if she/he does NOT try to keep current on those, then you could possibly get an answer such as : There is no research showing that “…. ”
BUT: what they can only be saying, since no one is omniscient of the INTERNET !!! Is a masked confession that they are not current on the literature, and they might even be close to retirement.
The canadian system has failed me miserably…..every specialist I’ve seen comes up with a totally different diognosis….this has been going on for decades!!!
Now, with the millions coming over, the canadian system is now a very severely broken system.
If you can even find a GP,seeing one gives you about 4 minutes of time…this 4 minutes is no exaggeration.
What really troubles me is, why do they drag a person through years of visits before getting a diognosis….not to mention ,years of pain and suffering.
Eleven years to diognose celiac.. REALLY….I guess that’s where a simple elimination diet can help
Actually, D. Buckey, that is where a bee-line to a naturopath might help the most.
It is sad that Naturopathy, Homeopathy and Chiropractic are shunned by Medicine.
I might also shun Homeopathy, but that’s me.
I am a FIXED spinal patient of Chiropractic.
I am SO blessed. My Chiro went above in beyond in understanding
more of the body than just chiropractic in the first place,
and treated THE ENTIRE LENGTH of my spine, instead of only the big sore spots.
For your interest: my brother trained to be a Nurse in Canada.
When he felt his contribution should be greater, and less controlled by MDs, he got another 4 years in university as an Occupational Therapist.
When this brother had chronic headaches, depression, irritability, he visited a Naturopath.
The Naturopath determined that he had a non-celiac gluten sensitivity. He went off breads/pastas based on wheat or barley,
and centered on gluten-free foods. This cured him of all of those symptoms.
The point being that a classically trained medical professional still has her or his own innate instinct, and may have the sense when speaking with a doctor to know that the doctor is missing a whole lot.
He became happy, not depressed, learned to reduce his stressors, and lost weight that he was not attempting to lose.
You speak of natropathy…I see one….he is also a regular m.d. best of both worlds because I don’t have to pay out of pocket.
I got a tel. Consult with him….I ask….have you ever heard of ivermectin? And….is it something I should try…..he asks ” are you recording me”
I say “no” he proceeds to tell me of a lady with stage 4 cancer that went to the weed and feed store and bought ivermectin…..he states that in 6 months her cancer was gone.
I go buy the 12$ ivermectin…..first dose changes my illness completely….itchy all over after 1st dose….great improvement in symptoms….subsequent doses do absolutely nothing.
I’ve probably done 40 different treatment of all kinds
Reponse to final sentence:
a) yes there probably is
b) I doubt Fibromyalgia would result. But I have an educated reason why.
Fibromyalgia, based on the MRI heat/activity findings of Gerald Albrecht with regard to dopamine production,
and according to the most modern neurology PhDs current theories,
…starts when the damage lasts past the acute phase (3 months) to heal,
and then, because the insult to the nerves has not healed, allows the number of pain receptors to double, and/or then triple.
That leaves the patient, who had a genuine injury and pain at first, with a seemingly permanent pain.
The problem is,
however,
about
NON-RESTORATIVE SLEEP.
Restorative Delta-phase sleep will include resetting the various types of nerve receptors (pain , baro pressure, heat/cold, toxins) back to base while you sleep.
The failure of restorative sleep causes the reset to fail.
If that reset fails then it will prolong, if not send a message to redouble efforts to SENSE the noxious sensation. This is to alert the brain to alert the THINKING HUMAN to maybe get rest and lay off of the stress to a joint, tissue, skin, muscle.
Finally, I only just read your comment. Maybe if I think about for 24 hours the answer will be YES, messed up aceytlcholine receptors can/will lead to Fibro.
But I don’t have time to search that for this reply.
Judi – do antihistamines decrease the benefits of mestinon?
I think: NO.
MAIN POINTS IN THIS expository run-on essay:
1. MG is quickly recovered from, without the PEM pay-back period.
2. CFS and MG, however, share a common enemy: incapacitation of the Acetylcholine reception system in 3 or 4 main applications in our bodies.
3. MESTINON SPEEDS the recovery interval back to normal the same day for MG
VS.
Not quite so easy for the one CFS/ME
recovery story athlete who benefitted in her
not-100%-but-significant recovery byMESTINON prescription.
NOTE: I would be over the moon to be asked for footnoted bibliographical justifcation of the following comments. But then, I am a cancer sign male. I will only do that, though if you seriously have faith in this theory.
I think it would helpful and useful for Cort to challenge me to a medical paper
proof DUEL on what he NOW considers, after all the various angles investigated by him, this far, to be the
MOST LIKELY HOPE of recovery for CFS/ME/SEID long-haulers. And I salute you all.
So… that means to exclude the blog article leads that were definitely unsuccessful or later proven impossible, ]
BUT, for example,
to banter about the lead on Vagus Nerve Stimulation as the best hope… but not only that one….
I spent some time at least 1.5 to 2 years ago assessing whether CFS/ME could be the same as MG, and I learned valuable and similar details, but had to rule out CFS *being MG.
The only thing that I think one could truly follow up is a possible new condition (CFS) which we might name ‘Myasthenia Extremis’ . MAYBE.
a) MG patients can get back to business shortly without PEM (Post-Exertional Malaise). That is the main difference, and what I call the Reason that CFS is not MG in disguise. Mestinon even HASTENS this recovery.
In other words, the MG patient can fully recover DAILY.
THIS IS THE REASON I SAY “NO”, CFS/ME is not MG in disguise.
HOWEVER:
CORT covered the story, here, of a former female athlete whose clever doctor prescribed the drug Mestinon to this athlete, and she made a painful but partial or half, or maybe even further, recovery because the doctor had experience in what I would call Complementary and Alternative Medicine (CAM).
THIS previous recovery coverage
(recoverage ??)
by CORT made me consider whether MESTINON, an MG drug (and thank you to the woman who corrected me here previously on it NOT being a diabetes drug)
could be a solution for most CFS/ME long-haulers. I believe it might !
but to start cautiously: only in a ‘certain subset or subsets’ of patients (I can’t believe I just said that. ET TU BRUTE?)
REASON:
MG is an Acetylcholine receptor problem with the NICOTINIC ACh receptor (nAChr)
the NICOTINIC a7 receptor type in particular, in the synapse between the Neuromuscular junction of Neuron and skeletal Muscle cell. There is a KNOWN Antibody AGAINST this receptor and it has been blamed in MG. Has science searched for it in CFS/ME? Cort….?
BUT HOLD THE PHONE:
In my personal research since summer 2020, I figured out for myself,
(and I can’t know whether any doctor/researcher had already done so..)
because I do not suffer from ME/CFS, but DO suffer from 2 long-covid little-understood conditions, but treat them successfully through diet,
that the a7 NICOTINIC receptor is used IN A SPARING NUMBER of body/brain *applications. COMPARED WITH Muscarinic ACh receptors which are dominant. I am NOT saying Muscarinic are greater in number, but rather, greater in diversity of their application. It is more than weird that exercise stamina, cognitive stamina and memory, and emotional stamina all cross-affect each other, any one of the 3 possibly, or *seemingly taking down the other 2.
But… if hardly anyone in the body relies on a7 NICOTINIC receptors, but these 3 ‘CFS/ME Points’, I will call them, in comparison to the 9 bilateral FIBRO points
ALL do, and since they SEEM TO AFFECT EACH OTHER or at least be interdependent on each other,
OR
(on … a 3rd party?) … then I am going to declare that the third party is the
a7 NICOTINIC ACh receptor (a7 nAChr) !
Skeletal is striated muscle surface, whileSmooth Muscle looks and reacts more smooth(ly) to ACh. Skeletal relies on the a7 NICOTINIC receptor, while the Endothelial cells of the blood vessels which should control: blood pressure, rely on MUSCARINIC receptors of ACh.
AND FOR THIS REASON, organs can be *spared somewhat in CFS/ME, while exercise, memory/mental stamina, and emotional strenght/stamina are NOT spared.
The a7 receptor is HELPED by MESTINON by deterring ACETYLCHOLINESTERASE which would otherwise remove and break down ACh.
This EXTENDS the amount of time that ACh will stay DOCKED on the
nAchr a7 receptor site. Normally the time is 1/1000th of a second. Secrete, clear, secrete in the 2nd millisecond.
The process of going for a full second, or a partiall second, or holding a car battery with arms straight out in front of you for as long as possible…
is termed LONG-TERM POTENTIATION of the cell
WHAT CELL: skeletal (bicep, leg), Cognitive front of brain, Limbic emotion centre (not center !) of brain. The 3 Amigos.
EVEN the pre-motor cortex relies on this a7 NICOTINIC receptor as well, but *seems less significant. IT IS NOT.
The latter cortex can be blamed for shaky footing. Also, the pigment cells in the IRIS of the eye rely on the a7 receptor, which sends light intensity signals to the inside RETINA of the eyes, IN THE BLINK OF AN EYE
(as quickly as one millisecond or 2) which is full of micro blood vessels, to control, guess what, MELATONIN messages to the brain to regulate sleep.
BUT…
if the a7 receptors FATIGUE, they will fail , for example, in night driving or other bright light conditions. Is this HYPER sensitivity of the optic nerve to changes in light level?
OR,
is it HYPO sensitivity of the IRIS a7 nAChr’s to Acetylcholine???!!!
IF in CFS/ME
the back of the eye does not get correct signals from the IRIS a7 gateway to the eye receptors,
then *depth of sleep (think REM, vs. DEEP restorative… plus those other 2… for a total of…. 4 phases of sleep,
THEN
the restorative phase will be lacking. If you do not recall, the restorative phase includes a VERY IMPORTANT FUNCTION: to RESET the sensitivity of all receptors.
Eg. A strong perfume this morning burned your nostrils, you got a headache, but still, later the perfume did not seem as strong as in that first moment. This helps us to NOT suffer for LONG time, USUALLY, and reset during sleep,
BUT
Confronted again by the same perfume strength the next morning, the cycle will begin fresh. So… what if your receptors did NOT become less sensitive during the day, and then, WERE NOT reset to your normal during sleep?
CRUCIAL POINT:
Restorative Sleep is found *LACKING, but not *non-existent in CFS and FIBRO.
Or else you would be dead already.
This caveat gives the hope for recovery !!
I BELIEVE THAT RESTORATIVE SLEEP IS THE KEYSTONE OF CFS RECOVERY)
……….and that is my embellished argument AGAINST CFS=MG.
BACKGROUNDER:
If you don’t know, which many of you will most likely not, and that’s ok:
when COVID blocks the ACE2 receptor (since that is its cell-injection preference), the next problem is that it PREVENTS Endothelial Blood vessel relaxation. As the heart beats, 2 processes should alternate and provide the Systolic vs. Diastolic pressure:
a) vasorelaxation to allow the pump,
then
b) vasocontriction to pump blood back up to the heart from , which, in the most “extreme” case because it is an extremity, is the lower legs.
We are concerned with (B) !!! in CFS/ME and accompanying POTS.
Since (B) has occurred (constriction) but Covid has blocked many of the ACE2 receptors, system-wide, both the constriction, and then the expected equal and opposite dilation, the vessels cling tightly to being constricted,
THEN,
during a covid cytokine storm, we will have a CFS-like experience.
The problem, then which leads to death or to CFS, depending on D3 levels and more upon pre-existing obesity/diabetes/ hypertension, or the co-morbid development of those conditions,
and upon whether you were assigned male or female at birth, but more accurately, depending on your normal estrogen levels…
Is that the SHUNT of blood to skeletal muscles does not occur sufficiently. Normally, in the all the blood vessel blog articles you have already read here,
either–
the Sympathetic Nervous System is favouring the body core, and organs for blood flow
OR
it is favouring the extremities (Peripheral or Nervous System)
CFS/ME/SEID is:
Systemic Exertion Intolerance Disease.
The body can NOT tolerate exertion.
Reason:
hypoperfusion of the skeletal muscles
When the SHUNT of blood SHOULD occur AWAY from the gut, for example,
and TO the skeletal muscles (and I always picture the worst case: running)
however,
NOT from the heart and lungs for aerobic exercise/cardiovascular exercise, which are not the same species,
It fails in many endothelial blood vessel cells.
COVID cytokine storm is the EXTREME, possibly leading to death based on how many /out of 3 of those vascular diseases one may have,
HUGE “but” (or caveat) :
We have seen that CFS/ME and the usual suspect autoimmune diseases also invariably experience a chronic fatigue and an un-restorative sleep.
Most-notably here: Fibromyalgia
CONCLUSION: “1-2%” vs. “10%”
a) PUBMED of the NIH of America, in papers and in meta-analyses
——–has stated that those suffering from Autoimmune disease usual suspects are 1-2% of the American population.
HOWEVER,
b) the WHO and the NIH/PUBMED have also reported that the INTERNATIONAL RATE OF Long-Covid, whether by infection or by injection of vaccine,
is…GLOBALLY… 1-2% of the 8 billion+ world population.
Hmmmmm..
MEANHWILE, I, personally, fall into the 10% of people who have the SEVERE side-effects of medications (drugs).
That is, if only 10% of humans have the most adverse, effects….
then iiiiiiiiii will have those.
And to reiterate, ALL OVER AGAIN:
I experience over-active bladder disease, and a closely situated number 2 disease as my contribution to long covid.
Butt !:
I took megasupplements during my 2 infections…
or 3
if the first was in Dec. of 2019 and seemed like Flu-related gut dysbiosis,
but withno other Flu symptom. My son… and the next day my spouse… and the 3rd day I… came down with a 24-hour, mostly asymptomatic unhappy stomach/intestine/diarrhea, with none of the other Flu-like symptoms.
I can’t say or not whether I would now have CFS/ME, or would have worse long covid sequelae…
IF I HAD NOT
been supplementing with
D3
Calcium/Magn
Omega 3 fatty acids (fish oils)(heavy on the DHA as opposed to EPA)
But:
I took those since 2020 May based on learning what fights viruses, and what protects from inflammation. All that based on emerging medical science on what the covid coronavirus does *on ACE2 receptors and by extension *to a7 NICOTINIC receptors which …. ‘never GET the memo! ‘
Chris
I noticed there is a trial running for efgartigimod, an MG drug, in POTS.
“Efgartigimod may be a viable treatment option for … post-COVID-19 POTS because it has been shown to reduce IgG levels, including IgG autoantibodies, which may underlie some of the autonomic disease manifestations in these patients.”
https://clinicaltrials.gov/study/NCT05633407?term=efgartigimod%20pots&rank=1
(Vyvgart is the brand name for efgartigimod.)
This is a straightforward case of vaccine injury i.e. an autoimmune response. ME/CFS is not undiagnosed MG.
Given the inflammatory and immunological nature of ME/CFS, and the research suggesting autoimmunity in at least a subset of individuals, it isn’t surprising. The covid spike protein, which the mRNA technology forces the bodies’ own cells to express similarly to an infection, has over 200 human cellular mimics on it – it’s an autoimmune ‘smart bomb’.
Actually, there’s far more evidence that the coronavirus is the real autoimmune “smart bomb”. While Tracy’s MG may very well have been triggered by the vaccine the case report notes “few” cases of MG have shown up after vaccination. Compare that to the increased incidences of these autoimmune diseases after a coronavirus infection.
rheumatoid arthritis (aHR:2.98, 95% CI:2.78–3.20),
ankylosing spondylitis (aHR:3.21, 95% CI:2.50–4.13),
systemic lupus erythematosus (aHR:2.99, 95% CI:2.68–3.34),
dermatopolymyositis (aHR:1.96, 95% CI:1.47–2.61),
systemic sclerosis (aHR:2.58, 95% CI:2.02–3.28),
Sjögren’s syndrome (aHR:2.62, 95% CI:2.29–3.00),
mixed connective tissue disease (aHR:3.14, 95% CI:2.26–4.36),
Behçet’s disease (aHR:2.32, 95% CI:1.38–3.89),
polymyalgia rheumatica (aHR:2.90, 95% CI:2.36–3.57),
vasculitis (aHR:1.96, 95% CI:1.74–2.20),
psoriasis (aHR:2.91, 95% CI:2.67–3.17),
inflammatory bowel disease (aHR:1.78, 95%CI:1.72–1.84),
celiac disease (aHR:2.68, 95% CI:2.51–2.85),
type 1 diabetes mellitus
and that’s only the beginning. A long list of neurological diseases also show up.
Hello Cort,
It may well be the case that covid itself has generated many cases of post infectious illness, indeed we post-viral ‘long haulers’ were expecting that. However that’s the general, not the particular. In this specific case, the temporal association is with vaccination not infection. Second, because so many people have had both the vaccine and covid, teasing them apart at a population level can be difficult. Here in the UK, according to the governments own data, there has been a serious adverse reaction reported – get this – per 800 doses. That’s more than for all the vaccines given since the War put together. I keep an open mind on it – both ways!
The vaccine studies followed tens of thousands of people who had not been exposed to the coronavirus to see a) how effective they are and b) to see what side effects they produced.
Granted they missed people with ME/CFS-like symptoms but they were looking for virtually everything else.
Hello Cort, we may have to agree to differ, but we’ve had studies like this from the ONS (Office of National Statistics) the purpose of which was to compare mortality in vaccinated versus unvaccinated groups. All seemed well until people such as Professor Norman Fenton examined the all important methodology used and the cohort definitions used. Turned out that the ‘unvaccinated’ group were merely those who didn’t have the 4th booster, whereas a competent analysis would have been between the ‘never vaccinated’ in contrast to the ‘ever vaccinated’. Now I’m not given to conspiracies, but having used statistics professionally myself, whenever I see a deliberate methodological bias I have to ask myself what they’re trying to hide.
I have put out links ad nauseaum to the many, many studies showing the vaccination reduced mortality and hospitalization. They don’t make any difference to someone who fervently believes otherwise so I will defer!
Hello Cort,
It’s not a question of fervently held beliefs, unless one believes that the covid vaccines are unique in medical history for not having any adverse events associated with them.
Whether the vaccine did or did not reduce mortality isn’t the point and my observation doesn’t hinge on that; the point I made is that in one particular case the temporal proximity of the two events is very likely causal; that the level of cellular mimicry on the spike protein is a ready explanation, and given the level of adverse reactions reported we should not be surprised by this.
In giving the example of the biased ONS analysis I did not claim that the vaccine was unsafe, merely that that study was worthless and we therefore don’t know the answer as a result of it. My point there was to illustrate how studies cannot always be trusted until one has checked the methodology used. We live in a world where things simply can’t be taken on trust anymore. After the horror of the notorious PACE trial in the UK, I’d expect the ME/CFS community to be cautiously although hopefully not cynically sceptical of medical trials.
OMG -:) Cort do you still think that? Very one-sided insight that I do not attribute to you. I thought your intelligence could see through the math of research. But you apparently have too little insight into statistics,
I completely agree with Nigel as a statistical analyst. Corona vaccinations are harmful, have a low effectiveness and are not harmless as you make it out to be.
It is very difficult to develop a good vaccine for respiratory infections. That is known, ask immunologists and experts.
And look at the increased IgG4 antibodies after vaccination and its consequences.
“I thought your intelligence could see through the math of research”
That’s pretty judgemental, Gijs, do you not think?
Statistics are math.
Research comes before statistics and is observation or data-gathering only, not conclusion.
Conclusions can come based on statistics.
There is no math of research.
There is only math of Statistical Analysis.
In fact, research starts with an open mind: a Hypothesis,
that if this THEORY is true,
then doing this test will yield THAT result.
The statistics would come
in only at the end, if there had been a statistically significant
mathematical trend from the analysed results of the research.
So I see you only judging Cort for believing something in which you do not.
Furthermore, if you wish to wax scientific,
the math that may be used to gather results and observations on a test/experiment of some type (a trial… a survey)
is considered to BE SCIENTIFIC.
If your method has no test subject and no controls,
or if it has both but the math is not equalized (20 tests, 20 controls)
or uses random medication doses but then pronounces
generalizations… The experiment/study has NOT been scientific.
Cort would be a FOOL to NOT trust the math of research.
Perhaps your intended point is that
Statistical Analysis is a math game that may be biased in favour
of the hypothesis.
But the Research itself, I expect, NEEDS consistent math,
or else the Statistics would be meaningless.
Apologies to Cort, my comment about not understanding statistics, this is not appropriate in a polemic even though we do not agree about mRNA vaccinations, which in my opinion also have strong side effects and problems that they have caused to the immune system. Sorry Cort 🙂
Serious adverse events of special interest following mRNA COVID-19 vaccination in randomized trials in adults
https://pubmed.ncbi.nlm.nih.gov/36055877/
Thank you for this Gijs
I totally agree with you, Cort. Whether it came from the vaccine or the virus itself, COVID has triggered many autoimmune issues and neurological disorders with people worldwide. You use a great phrase “smart bomb”. There will be so many papers, research studies and clinical trials. I’m so hopeful that those with post-viral infections/injuries will find some answers, and that ME/CFS will find some pathways to treatment options.
Keep up with the great work that you do, thank you so much!
how many of these patients who now have an autoimmune disease were vaccinated? And how often? 1, 2 or 3 times or more. It is known that after the booster more problems arose with the immune system. More autoimmune diseases and cancer and especially excess mortality correlated with excess mortality worldwide, especially in countries where vaccination was widespread. I think some people are so obsessed with vaccinations that they live in tunnel vision. And don’t understand statistics. There is no hard objective incontrovertible evidence that vaccinations have prevented hospitalizations and deaths. Purely according to statistical models with assumptions. Although I believe that the virus itself can also cause medical problems.
https://www.youtube.com/watch?v=iS1talMLNJQ
Slain by stats. Lies, damn lies, and statistics. Good job.
Benjamin Disraeli was right wasn’t he 🙂
Ankylosing Spondylitis, only AFTER covid? Whoa. Does life get any worse?
Well, I suppose yes ! : IBS, Celiac that takes 11 years to diagnose, Lupus, mixed connective ***, and Sjogrens.
But you know what, Cort? In a way this points us in the best direction.
Sidebar: Some say that everybody’s different. Who can argue.
the Cheers show theme said that people are all the same.
Who can argue?
Back on Track: I say these post-covid sequelae might be the best direction of focus for SOLVING CFS/ME
because
we can’t say that COVID CAUSED these other diseases, but we see
increased incidence.
Let me put it this way: We see increased CO-incidence.
In other words, it shows that the same conditions may be capable of
*presenting as various autoimmune conditions. I guess that is where the
‘people are all different’ statement is borne out.
My points being that:
1. Somebody here recently said you usually don’t get just one autoimmunity, but more
2. Dr. Terry Wahls said the same: that you may start with one, but as the CAUSE goes untreated, new ones form. Her life is proof, and she is a Doctor of Functional Medicine (the few friends of autoimmune sufferers).
3. The ORDER in which the multiple autoimmunities appear, is, I would gather,
dependent on the individuality, or individual areas of health or dysfunction in the patient’s body. They will not all be equally strong or equally weak.
4. I think, therefore, Cort, that for you to underline how many awful terrible autoimmune conditions erupt, triggered by the compromised homeostases that COVID contraction brings to 1-2 % of the world, if not more,
bEARS OUT the two above theories of
where there’s smoke, there’s fire. (Oops. Microbiologists don’t say that in papers. Okay. Where there is smoking there is inflammation. Phew !)
To tie it all together:
someone famous once said “inflammation is the beginning of all disease.”
Hypocrates said “All diseases begin in the gut.”
I say, same as Fasano and others, Leaky Gut begets leaky BBB (leaky brain) which allows encephalomyeltis, or brain inflammation.
Dr. Tom O’Bryan says, while role-playing, in the voice of a patient:
“You say that the same type of tight junction apparatus (but even tighter) as in the Epithelial (outer) intestine lining …. the one which can allow leaky gut with [eg. Celiac disease] because of zonulin… is used in the BBB?”
And switching to his doctor role he responds: ‘Yes !”
And the fictitious patient continues: “So because of the same apparatus and because of the presence of zonulin, the same triggers could also give me leaky BRAIN?”
To which Dr. O’Bryan responds even more emphatically in the video I watched:
“YES !!!!”
Recent research papers on COVID show that during the cytokine storm the “function” of the blood vessels in the BBB area is “compromised.”
For these reasons, I make the following nudges:
a) seal the gut
b) seal the BBB
c) how you do
(I know..)
Nigel,
I think it is very important to know that:
the body’s cells do not EXPRESS SIMILARLY to the virus.
The truth is that antibodies are like scotch tape: they are wise
formulae of what will most effectively bond to the
Antigen
Hello Christopher,
Are ‘scotch tape’ and ‘wise formulae’ terms regularly used by microbiologists? Please don’t patronise me and try reading what I said. The proximity of the two events is the simplest explanation by far, and FYI there have, for example, been hundreds of autoimmune post-vaccine vasculitis cases reported in the UK, not to mention cardiovascular events. I did refer specifically to the spike protein which is what the messenger RNA causes the cell to express, not the whole virus. mRNA ‘vaccines’ are fundamentally different in mechanism from conventional ones based on dead or attenuated viruses and that’s not an opinion.
But let’s call it out. At the beginning of this pandemic some right wing idiots first denied the whole covid thing, one said idiot even proposed bleach, and a lot of thinking people are now in a state of complete, unthinking ideological reaction to this. Look what’s going on here – I suggest that there can be one – just one – case of a vaccine injury and for some people it’s like saying you don’t believe in God and the Angels when you’re living in the 14th century.
No, Nigel, scotch tape and wise formulae or not terms regularly used by microbiologists.
Neither is “the whole covid thing.” Thing. The whole thing.
Is that the rule here? No similes? Are you sure that every statement expressed in solely microbiology terms is easily understood by all readers here? I am not so sure. I was not attempting to patronize you — ie. treat you as if you were stupid and should blindly believe what I say, nor to pretend to be kind while actually thinking myself superior. My statement about wise formulae means: it is a wise strategy: to make engineer a chemically attractive (by positive and negative charges) antibody that can bond with the intruder on multiple proteins, which is called neutralizing the intruder, whether it be a virus, a spike protein only, or a bacterium.
The purpose of the antibody is to stick to the intruder so that it can be take to a macrophage. That is why I made it simpler as an analogy of scotch tape.
I did try re-reading what you had said, after reading it the first time. I have read it now for you too, and I still disagree.
If you mean that the ribosome builds/replicates the spike protein, I agree:
https://biobeat.nigms.nih.gov/2022/06/in-other-words-how-cells-express-themselves/
If you would like to be exact:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7149683/#:~:text=After%20gaining%20entry%20into%20the,its%20proteins%20by%20host%20ribosomes.
“The seven stages of virus replication are categorized as follows:
1. Attachment
2. Penetration
3. Uncoating
4. Replication
5. Assembly
6. Maturation
7. Release
Cells express parts of their genome when appropriate. The virus is said to use the ribsome to replicate its own genome. I see the virus as passive, not active, but that is how the microbiologists express their idea: as the virus being active.
Therefore, it is the Spike protein that is expressing the parts of its own genome represented in the spike protein.
What a cell does is express the ACE2 receptor, always. It is needed for every pump of the heart. The cell does not contain the spike protein in its DNA therefore it can’t very well express it, can it.
I think hijack IS used by microbiologists, on occasion.
The spike protein hijacks the ribosome and EXPRESSES ITSELF.
The second link on PubMed that I gave you reads:
(paraphrase) the virus “facilitates” replication of its genome “using” the ribosome.
Therein lies the problem: good proteins are coded in the DNA which has constant quality control performed inside it. mRNA must transcribe the coding of what the cell needs to express inside the cell, or to express on the cell membrane as a receptor. But an mRNA vaccine, or just an
mRNA-containing virus bypasses the cell’s nucleus.
I disagreed with you because the cell is not purposefully expressing anything to do with the spike protein. The only cell expression relevant here is that the cell expresses ACE2 receptors and the spike is mimicking a self-enzyme that is INTENDED to attach there. I thought it best not to confuse cell expression with intruder self-expression via hijack.
“Please don’t patronize me and try reading what I said”
No problem.
I would not patronize and won’t try reading what you said again.
Did you perhaps mean
“Please don’t patronize me and INSTEAD try reading what I said” ?
I am sure you did. The correct diction and grammar ALWAYS makes arguments more clear.
Thank You Cort for this information.
My Theory follows:
I was infected with a pathogen/virus 13 years ago via saliva. I know for sure it was a virus based on this individuals background/situation. Soon after that, I started developing chronic fatigue, unusual infections, muscle weakness, etc. Five years later it was discovered that I had immune deficiency. My husband started developing the same exact symptoms and his immune system looks identical to mine. Last year, I was diagnosed with Myasthenia Gravis and had a tumor on my Thymus. The thymus had to be removed. It is theorized that viruses cause Myasthenia Gravis (see article: Viral infection in thymoma and thymic tumors with autoimmune diseases – PMC (nih.gov)). My theory is simple: the virus that I was infected with caused immune dysfunction/deficiency and this is what caused the Myasthenia Gravis and ME/CFS in me. The surgeon had my thymus tissue frozen at my request. I cannot find one person willing to test my thymus tissue for the viruses mentioned in the article. One has to wonder, do they ever really want to find the cause of these illnesses?? I’m not saying this is the case for all of those with Myasthenia Gravis, but I know for sure that it’s true for my case. I also believe that virologist Elaine DeFreitas had discovered the right virus back in the 80’s for the Incline Village outbreak of ME/CFS: an ‘HTLV-2 like’ virus. I say this because the individual that I had the saliva exchange with was a prior injection drug user and almost all injection drug users have HTLV-2. Although I’m testing negative for HTLV, what Elaine DeFreitas found was not exactly HTLV-2 but similar to it. I’m not a doctor, but it seems so logical. Why can’t these researchers put two and two together. So frustrating!
Hello Linda,
So sorry to hear about your health conditions. I certainly share your frustrations. I’m not a doctor by the way, but have you ever had a T-Cell sub-set analysis done or tried valaciclovir?
Thank you Nigel. Yes, I’ve had many immune system tests including CD4 and CD19 cells. They are still in range but are borderline and continue to decline year over year. My immunoglobulins are deficient as well, especially IGM and IGA. As I said, my husbands immune system looks identical to mine. It’s hard to argue that there’s not a pathogen involved here since there’s two of us with identical symptoms, but the doctors try to say that it’s just a dysfunctional immune system. If it was just me, I’d say ok maybe, but it’s both of us and given the backstory, there’s no doubt in my mind that it’s a virus. The symptoms are also in sync with what was found in the individuals affected with the ME/CFS Incline Village outbreak. The more accurate name is CFIDS or Chronic Fatigue Immune Deficiency Syndrome because that’s exactly what it is. The book by Hillary Johnson says it all: ‘The Why: The Historic ME/CFS Call To Arms’ published in 2022. I started to do a trial of valaciclovir but that was interrupted by the Thymus issue. I’m currently trialing a mushroom extract called AHCC as this is supposed to act on Herpes viruses, although my belief is that it’s the ‘HTLV-2 like’ virus that was found nearly 40 years ago, of which the CDC ignored and dismissed. Hillary Johnson also discusses this in her book. Alot of these researchers seem like they’re barking up the wrong tree. It’s a pathogen. Find the pathogen. Look at tissues other than blood. For Gods sake, it’s been 40 years since the outbreak. I have found at least a couple of doctors who have tried to help and trial different medicines, but it’s been a hellish journey to-date, certainly one that I never saw coming. Sorry, I’m rambling due to frustration. Thank You for the inquiry.
I also read that book, ‘The Why’, a while ago and thought it very thought provoking–kind of like a PBS Frontline investigation/expose. I recommend having a look.
Hello Linda,
Thank you for your candor in describing this, and in trying to trace the possible
causes…
and even the obvious result: spread to your partner.
I can not speak to the effects of the drug trial by you.
It will be very helpful if you describe for us the ways in which your husband’s immune system was similarly altered.
What I want to address here is : the THYMUS.
The Thymus is like a library or archive chemical signatures of the ANTIBODIES, and i don’t know at all, but perhaps also of the ANTIGENS.
The cure or solution for some autoimmune diseases has been to remove the Thymus.
If that occurs, then, a chemical memory of various pathogens and their attackers will be lost. AT LEAST, the most offensive Antibody recipe will be lost.
If so, that would seriously lessen any overreaction to the antigen.
Unfortunately, many Antibodies are created AGAINST self-chemicals.
Therefore: I see removal of thymus as a way of SERIOUSLY lowering the overresponse of the immune system to a chemical which is actually self, and not harmful.
BUT: it is very extreme in the sense that then one’s body will ALSO have lost the collective memory of lesser threats,
to which the white cells would have to now mount investigations and responses.
Hello Christoper,
My husband’s immune system is identical to mine: deficient IGM and IGA, low IGG, CD4 cells that were at 700 two years ago. We’re going to re-check his values in about a month. I’m also trying to get him to get tested for Myasthenia Gravis antibodies as he also has the muscle weakness and fatigue, etc. He does not like needles. I’ve been told you don’t need the thymus after a certain age but I don’t really believe that. So it will be interesting to see if my CD4 and CD19 counts continue to plumet even further/faster now that my thymus is gone. My CD4 cells were at 1200 back in 2018 but are now at 700, so they continue to decline. This is a very easily transmissible pathogen and I can’t believe the public hasn’t been warned. In addition to the ‘HTLV-2 like’ retrovirus, I’ve read up on the HIAP-II retrovirus (see link below) that they’ve found in people with autoimmune diseases. It feels like they’ve known about this for a while now but have kept it under wraps, probably due to a number of factors. I’m still trying to find a researcher willing to test my thymus tissue. There’s got to be some authentic scientists out there somewhere!
https://analyticalsciencejournals.onlinelibrary.wiley.com/doi/pdf/10.1002/jemt.20234
I’ve been ill my entire life..
GET THIS….my premier in my province of Saskatchewan, Canada on the local news today talking about the possibility of China spraying chemicals down on us!!!
Could this be what’s killing us all.i almost fell off my rocker.the fact that it made local news I’d downright alarming.
I assumed only conspiracyists flapped their lips about chemtrails
Not sure what this means but I had an Ig panel and my IgM was very, very low, so low it wasn’t even in the reference range. Doing some research I discovered that supplementing IgM suppresses
Myasthenia Gravis (at least in mice). It would be interesting to know if others of you have had this test and have found low levels of IgM and have suspicious MG symptoms.
Besides having ME/CFS and Ehlers-Danlos (plus a few other afflictions), all my Ig levels are low, but the IgM is the lowest. I’ve been sickly all my life. My IgG and IgA are low normal.
I’m a genetic carrier for SCIV (Severe Combined Immunodeficiency, Autosomal Recessive, T-cell negative, B-cell positive, NK cell-positive). Being a carrier means that it does not manifest, but with the wrong combination, offspring could have this problem. So it’s said, but I do wonder…
Excellent points made.
Very important markers for us in CFS/ME
Well Christopher, I continued researching my queries and lo and behold, Cort had a blog which gave a lot of answers;
https://www.healthrising.org/blog/2018/09/13/ivig-chronic-fatigue-syndrome-pots-fibromyalgia/
Seems as if there are a lot of ‘it depends’ in the results. As usual, sub-sets abound, but there is still interest. Unfortunately, the cost of this therapy is a huge hinderance.
Thank you for your compliment!
Linda,
My purpose is to emphasize how previously-made logical medical points have helped me and have seemed medically sound in their etiologies (how the conditions came to be). It is secondarily to emphasize how the specific interventions (therapies)… that have helped patients seem correct to me.
Please know that I am VERY skeptical, after 4 years of :
a) caring about anyone with CFS or Fibromyalgia
and
b) researching or *meta-analysing* the excellent work of the most open-minded PhD researchers that I have found.
Therefor I launch an informational and theoretical volley on HealthRising when either the blog seems to have points in the most logical direction,
AND
when a point seems to derail the better direction of this Service, provided by Cort Johnson.
Christopher, I know the ‘reply’ button is a bit confusing, but I received your reply to Linda. Hope that is what you intended.
Best, Nancy B.
I will check out your link
Mestinon trial has helped me although I am considered seronegative MG.
Hi Cort
I missed this piece somehow until today. This is well-done.
The story you tell is so close to my story.
My story includes infection events, that in hindsight paint a picture of increased weakness and fatigue, not returning to pre-infection baseline, for over 4 decades: Chicken Pox 1980, Lyme 1989, Influenza 2008, COVID infections+vaccine 2020/2021/2024.
I was fortunate to receive a POTS diagnosis in 2010 and prescribed Mestinon. I reported two weeks into the Mestinon, “I am still struggling to be upright, but holy cow it is like I got a facelift and my big smile is back. I cannot believe it”. Despite the telling observation, I was negative for known MG autoantibodies in 2010 and remain negative to this day.
However, hospitalizations for MG distress/crisis events related to UTI infections provided opportunity to make formal clinical MG diagnosis in 2017. The five day loading dose of IVIG was equivalent to ‘raising the dead’. A couple of infusion nurses who worked with me that week in hospital actually had tears on day 5 when I was discharged. I arrived in wheelchair and bounced out on day 5 driving myself home. I benefitted from IVIG for the following 7 years and recently was approved for the move to Vyvgart. I completed my 2nd cycle this week. Both infusions instrumental in pulling me through the long symptoms of my unofficial COVID infection in 2020 and official COVID infection 16 weeks ago. Vyvgart especially.
The source of my MG is still unknown. I am electrodiagnostic negative as well and no thymoma. I have the feature of responding to albuterol for MG breathing weakness. Interesting since I was diagnosed in 2003 with adult-onset asthma and Advair created a “progressive rag doll like weakness” leaving me unable to get out of bed by day 6. It was stopped and I was told to manage the asthma with albuterol alone. Another clue of the MG diagnosis lay ahead. Congenital MG gene testing may be insightful.
For 3 decades I met fibromyalgia diagnostic criteria, officially noted in my medical chart. An official MEcfs diagnosis was made by Dr M. Lerner in 2014. I was his patient until he passed away. I do have low carnitine and personal and family history of hypoglycemia w/out diabetes and Reye’s Syndrome (can be fatty oxidation disorder). So my carnitine deficiency may be primary/genetic. I am dependent on 4 doses of Carnitor daily. So there is that myopathy piece in addition to MG. I know some MEcfs patients have low carnitine.
I was doing okay enough on IVIG, but Vyvgart is already improving single breath count to highest numbers I’ve ever had and other strength measurements since starting it August 8.
All that personal detail I share to show that I am one more story among your followers for whom this piece speaks to. Tracy’s story, my story and your journalism could help others coming up behind with similar puzzle pieces starting to fit together.
Be Well. As always, I am very grateful for your work Cort.