Thinking Outside the Box
This is the second of three posts on IVIG treatment and autoimmunity in chronic fatigue syndrome (ME/CFS), POTS and fibromyalgia.
Findings in autoimmune dysautonomia are opening up new possibilities for POTS, ME/CFS and possibly fibromyalgia.
It’s time to start thinking outside the traditional ME/CFS/POTS/FM boxes. It’s possible that if you’ve been diagnosed with these diseases that you may actually have an autoimmune dysautonomia – an autoimmune disease which has attacked your autonomic nervous system. It seems more and more likely that, given the proper testing, a significant subset of ME/CFS/FM/POTS patients will fit into that category.
Dr. Schofield at the University of Colorado and Immunoehealth, Denver, and Dr. Chemali of the Eastern Virginia Medical School, in Virginia, are two of the doctors leading the charge. In a Dysautonomia International video, Dr. Schofield called herself an “autoimmunologist” – one of the few around. A lot of what she does, she noted, doesn’t fit into the current silos in medicine, but then neither do her patients.
A recent study of IVIG’s effectiveness demonstrated what kinds of patients these doctors are treating and how effective the treatments can be.
IVIG Treatment in Autoimmune Dysautonomia
Am J Ther. 2018 May 14. Intravenous Immunoglobulin Therapy in Refractory Autoimmune Dysautonomias: A Retrospective Analysis of 38 Patients. Schofield JR1, Chemali KR2.
The retrospective study included mostly disabled people with severe autonomic nervous system issues (such as POTS). Most patients were bedridden or nearly bedridden and had been sick for an average of 5 ½ years.
In order to get IVIG, a person needed to:
- Be diagnosed with an autonomic nervous system disorder such as autonomic disorders: postural tachycardia syndrome (POTS), orthostatic intolerance, vasovagal syncope, inappropriate sinus tachycardia, gastrointestinal dysmotility, complex regional pain syndrome and/or neurogenic bladder.
- Demonstrate persistent positivity for one or more autoantibodies that have been associated with autonomic dysfunction.
- Be unable to work or attend school regularly despite standard lifestyle and symptomatic pharmacological therapies.
- Be able to be treated with IVIG at a dose of at least 1 gm/kg monthly for at least 3 months.
The Gist
- A significant subset of ME/CFS, POTS and perhaps fibromyalgia patients may have an autoimmune dysautonomia.
- People with autonomic nervous system problems, positive antibody tests, a family history of autoimmunity and/or who are unable to work, may have an autoimmune dysautonomia.
- Several traditional antibody tests fail to find evidence of autoimmunity. Newer antibody tests for antiphospholipid syndrome and Sjogren’s Syndrome are, however, often positive in this patient group.
- IVIG was “effective” in over 80% of the participants – many of whom had POTS – in this study.
- A four month trial of IVIG is needed to determine if the treatment is effective. It may take a year or even two for the drug to reach optimum effectiveness.
- Virtually everyone in the study has problems with gut motility.
- Positive small nerve fiber biopsies – common in this group – are very helping in getting insurance coverage.
- Chronic autonomic nervous system problems – perhaps similar to those seen in ME/CFS/FM and POTS – may be triggering autoimmune processes.
Diagnosis
Of the thirty-eight patients, 31 were diagnosed with either POTS or orthostatic intolerance. The average age was 36 and most were women. Their average functional score was a paltry 24 out of 100.
Antibody Testing
The following antibodies were tested for:
- anticardiolipin immunoglobulin M IgM, IgG, IgA
- beta-2 glycoprotein IgM, IgG, and IgA;
- lupus anticoagulant testing;
- anti-phosphatidylserine IgG, IgM, and IgA;
- antiphospholipid syndrome/antibodies;
- anti-prothrombin IgG;
- anti-phosphatidylserineprothrombin, IgM and IgG;
- anti-annexin V IgM and IgG;
- anti-phosphatidylethanolamine IgM and IgG;
- novel Sjögren syndrome panel (carbonic anhydrase-6) IgM, IgG, and IgA;
- parotid secretory protein IgM, IgG, IgA;
- salivary protein-1 IgM, IgG, and IgA;
- thyroid stimulating hormone receptor antibodies, thyroglobulin antibodies, and thyroid
peroxidase antibodies; - antinuclear antibody testing including Sjogren syndrome-A (SS-A) IgG,
Sjogren syndrome-B IgG, smith IgG, ds-DNA IgG, NRNP
IgG, centromere IgG; rheumatoid factor, anticyclic
citrullinated peptide antibodies; - autoimmune dysautonomia panel by Mayo laboratories.
Note that none of the new antibodies being studied in POTS – which are available for testing in Germany – are included! That means that POTS patients didn’t necessarily need to get their blood tested in Germany to find evidence of autoimmunity.
Despite the fact that many of the participants in the study had POTS antibody tests which are not specific to POTS, they were still able to pick up evidence of autoimmunity. (This was primarily due to the high percentage of patients testing positive for novel Sjogren’s, thyroid and anti-phospholipid antibodies.)
Only if the results from the above tests were negative was the CellTrend test for POTS done. That test examines antibodies found by Dr. Kem in POTS patients. They include:
The Cell Trend POTS Antibody Test
- Angiotensin-II-Receptor-1 (AT1R) IgG-auto-antibodies
- Endothelin-Receptor-A (ETAR) IgG-auto-antibodies
- Beta-1 adrenergic receptor auto-antibodies
- Beta-2 adrenergic receptor auto-antibodies
- Muscarinic cholinergic (M1) receptor auto-antibodies
- Muscarinic cholinergic (M2) receptor auto-antibodies
- Muscarinic cholinergic (M3) receptor auto-antibodies
- Muscarinic cholinergic (M4) receptor auto-antibodies
- Muscarinic cholinergic (M5) receptor auto-antibodies
- Alpha-1 adrenergic receptor auto-antibodies
- Alpha-2 adrenergic receptor auto-antibodies.
The CellTrend ME/CFS Auto-antibody Tests
To be complete, another series of Celltrend antibody tests have been created by Dr. Scheibenbogen and Celltrend to identify chronic fatigue syndrome (ME/CFS) patients. (All of the ME/CFS antibody tests are included in the POTS panel.)
- Beta-1 adrenergic receptor auto-antibodies
- Beta-2 adrenergic receptor auto-antibodies
- Muscarinic cholinergic (M3) receptor auto-antibodies ELISA
- Muscarinic cholinergic (M4) receptor auto-antibodies ELISA).
Autoimmune Testing Results
Traditional Autoimmune Testing Fails
“We’re capturing only the tip of the iceberg (with traditional testing).” Dr. Schofield
Several important themes emerged. Note that only two patients needed to have the POTS antibody testing done (because their results on the other autoantibody tests were negative). Importantly, traditional autoimmune testing – the antibody testing your doctor is likely to provide – was pretty much a spectacular failure. While forty percent of the participants did have a positive ANA result, other common antibody tests were negative.
Several traditional antibody tests proved almost useless in this patient population.
To find evidence of Sjogren’s syndrome, most doctors will do the SS-A and SS-B tests, but the SS-A test was positive in only 8% of the patients, and no one tested positive for the Sjogren syndrome-B antibody test. The commonly used rheumatoid factor test – which is often positive in other autoimmune diseases – was positive in only one participant. Shockingly, the Mayo’s clinic’s autoimmune dysautonomia panel – presumably the gold standard in autoimmune dysautonomia testing – was positive in only 13% of patients.
Any doctor relying on these tests would be hard pressed to find any evidence of autoimmunity – and would undoubtedly send his patient home with another diagnosis.
Positive results on the less traditional tests such as antiphospholipid antibodies (76%) and novel Sjögren antibodies (42%), on other hand, were common. (Several studies have found higher rates of these novel antibodies in Sjogren’s patients than the traditional antibodies tested for in the disease.) Thirty-two percent of the participants also tested positive for one or more thyroid antibodies.
Sjogren’s Syndrome (SS) and mast cell activation syndrome (MCAS) got a lot of play at the 2018 Dysautonomia International Conference and it’s easy to see why. Sixty percent of the participants were diagnosed with early Sjogren’s Syndrome, 37% with joint hypermobility syndrome, 32% with thyroiditis and 29% with mast cell activation syndrome (MCAS).
Gastrointestinal motility problems are no surprise given the important role the autonomic nervous system plays in the gut, but the incidence of gut motility issues was still surprising. Every patient in the study had at least some issue with gastrointestinal dysmotility.
A family history of autoimmune disease was present in a remarkable 75% of the patients. (The population norm is 8%.)
IVIG Treatment
The patients were given 1 gm/kg per month in weekly divided doses (.25 gm/kg per week.) The initial rate of infusion was 3 gm/h, or the slowest rate possible to avoid the possibility of aseptic meningitis, then increased by 1 gm/h. Patients were also given 1 liter of saline prior to the infusion. If, after 6–9 months, the patient was not at 80-90% of normal, the dose was gradually increased. Most patients responded to less than 1.3 g/Kg per month.
Results
The response rate (83.5%) was remarkable given this group was, by definition, very difficult to treat. (Exactly what constituted a successful response was not clear in the study.) Many were POTS patients who’d gone through the entire gamut of POTS treatments but remained disabled. The IVIG response rate was similar that found by Dr. Oaklander in children with small fiber polyneuropathy (SFPN) who probably had a similar disease presentation. (Dr. Schofield noted that her patients with signs of autoimmunity, autonomic nervous system problems, and who were disabled, usually tested positive for SFPN, as well.)
Small Nerves – Big, Big Problem? Drug Trial Points Finger at Autoimmunity in Fibromyalgia and ME/CFS
For most, the response was gradual, with the average time to first signs of improvement taking over 5 weeks. Since it took some patients 12 weeks to notice improvement, the authors asserted that a 4-month trial was necessary to determine if the drug was effective.
It sometimes took a year or more for the treatment to reach optimal effectiveness – possibly because of the time needed to gradually heal the small nerve fibers. (Dr. Schofield showed a graph of declining Clonidine dosage over two years in one patient as his/her small nerve fibers healed.)
For some the improvement was dramatic; despite the high degree of disability, a few patients were able to regain near- normal functioning. Thankfully for the old-timers among us, duration didn’t matter a whit; even people who had been ill for 20 years responded to the drug.
Causes of Response Not Clear
Further examination of a few participants yielded some intriguing findings that brought to mind Ron Davis’s statements about the complexity of the body. It turns out that some patients received substantial benefits without seeing any improvement in their small nerve fiber loss. That indicated that small nerve fiber problems aren’t necessarily causing the severe impairments these patients were experiencing.
The authors suggested the effects the autoantibodies were having on the neural receptors that effect autonomic functioning are more important, but even then, autonomic functioning test results did not always correlate with improvement; i.e a patient’s autonomic functioning could still apparently remain impaired even if they had experienced significant functional improvement. Something else (they didn’t hazard a guess what) was going on.
The authors also noted that because of how IVIG works, antibody titers are not likely to be helpful in determining improvement either.
Chronic Autonomic Nervous System Problems Tick Off Autoimmunity?
Autonomic nervous system problems are rife in ME/CFS, FM and POTS. Heart rate variability (HRV) studies invariably suggest reduced parasympathetic nervous system functioning (low HRV) in these diseases. It’s not known how much the HRV results affect functioning, but they have been correlated with increased pain, poor sleep and decreased cognitive functioning in ME/CFS and/or fibromyalgia.
Dr. Schofield, in her video and this paper, suggested that chronic autonomic dysfunction could be triggering autoimmune diseases through its inhibition of the anti-inflammatory cholinergic system. The vagus nerve – which controls the parasympathetic branch of the autonomic nervous system – also regulates the anti-inflammatory immune response via the cholinergic pathways. If vagus nerve inhibition is present – as it appears to be in these diseases – then it stands to reason that the anti-inflammatory response is inhibited as well.
The authors suggested that resulting increase in pro-inflammatory cytokines such as tumor necrosis factor (TNF-a) could help set the stage for the appearance of the autoimmune diseases discussed in this paper. Other pathways, the authors said, are possible as well and they suggested that chronic autonomic nervous system problems could also trigger mast cell issues.
Getting Tested
If your dysautonomia problems (problems standing, exercising, gut issues, even cognitive issues) are already well treated; i.e. you have normal functioning (definitely not the crowd reading this blog), autoimmune testing may not be needed.
Dr. Schofield of Immunoehealth is ploughing new ground in autoimmunity and the autonomic nervous system.
If, however, you cannot work or go to school, if you have a positive antibody test, a family history of autoimmune illness, and your illness began with a common autoimmune trigger (infection, vaccination, pregnancy, concussion or trauma) then the authors believe that autoimmunity should be further explored.
That, in particular, includes testing for antiphospholipid, novel Sjögren’s, celiac, and thyroid antibodies and, if necessary, the adrenergic and muscarinic antibody testing in Germany. (Dr. Kaufman regularly uses the German tests.)
Skin biopsy results were not reported in the paper, but Dr. Schofield reported that patients who have evidence of autoimmunity, have autonomic nervous system problems and can’t work or go to school, also commonly have a positive skin biopsy. That’s important because positive skin biopsy results have been very helpful in getting insurers to cover IVIG.
Given the cost and potential risks of IVIG treatment, the two doctors recommend it only for the more severely ill – a category that would probably fit many people with ME/CFS.
The doctors also recommend a four-month trial of IVIG in patients with disabling autonomic nervous system problems and a positive antinuclear antibody test, positive thyroid antibodies and/or abnormal serum immunoglobulin results, because these findings suggest an autoimmune disease affecting the autonomic nervous system is present.
IVIG Series
- An IVIG Chronic Fatigue Syndrome (ME/CFS) / POTS Treatment Success Story: IVIG#1
- Are Chronic Fatigue Syndrome, POTS and Fibromyalgia Autoimmune Dysautonomias? IVIG #2
- The Case for IVIG Treatment in Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Small Fiber Neuropathy, and POTS: IVIG#3
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Hi Cort, congratulations for the excellent work.
I got a litlle bit confused about the positivity of the tests, did the cell trend tests perform well or not?
I got the impression that only the traditional Sjogren tests were not performing well.
That was an interesting part. Only two or three of the 38 people apparently even took the cell Trend tests. Since the only people to take the Cell Trend test for those who didn’t get a positive results on the other tests, it appears that the other tests were sufficient for the vast majority of people. That was welcome news.
Thanks for another important blog Cort. It is of particular interest to me given recent antibody tests that I had done that have a positive correlation to POTS.
Sorry if I’m being dense, or missed something important. But just to be clear, that series of antibody tests that you list first were the most effective at turning up positive results…correct?
But they are not the same tests that a person’s normal physician would/could order? (Or are they?) But they are also not the type that are being tested for most rigorously in recent studies? (And they are different than the Mayo Clinic and CellTrend panels.)
Do I have all of that right? If I did understand that all correctly, then what is this panel that she is using? And, just so I understand, why would that be more hopeful than if she’d had to rely on other panels (like the CellTrend)?
Thanks!
Cort. I have been ill with just about every symptom they talk about. I have known for years that my autonomic nervous system is out of whack. I’m 78 years old and came down hard with the illness full blown right after a divorce and the flu. I am a walking, talking survivor that can fill a book with the autonomic dysfunction, symptoms testa and etc. ( the whole syndrome.) I also have autoimmunity ( been thrown around in the system for years) lupus, Shogren’s Syndrome, Fibromyalgia, and the one that hurt the most was…..All in my head!! or mental illness. I came down really bad in 1965. I would like to list all the symptoms.. Can I write this lady who is so kindly doing this study? I also made up some of my own healing treatments to counteract the Autonomic nervous system..Going to write a book someday. Just trying to get well. I’m not bedridden now and have still forged my way thru my life. If you come to Florida on your camping trip…please stop by and see me…I don’t look sick. Share a campfire!! I know you were going to meet with Dr. Klimas. Nila Jean 813-764-1407.
Yes, I will make that clearer. The first set of antibody tests were for the vast majority of participants all that was needed to diagnose a possible autoimmune problem.
I believe any physician could order these tests. Any physician can easily order the Mayo test and any physician could also order the CellTrend tests! (They just have to order them from Germany. Whether doctors would be willing to order these tests or whether insurance would pay for them is another question.)
Basically, I believe that all these tests are commercially available, if you have a physician who is willing to order them for you.
Got it, thank you so much!
And the video you refer to, is that “IVIG Therapy in Refractory Autoimmune Dysautonomias” from November 2017? Or is there a newer one as well somewhere?
I don’t know of one but if you can find one please let me know.
The 2017 talk is the only one I can find as well. Here is the link for anyone else who’s interested: https://vimeo.com/243160944
Thanks Cort!
Cort,
I understand your previois reply to me now!!! This connects the dots for me and my son in more ways than you can imagine. Thank you!!
Good luck!
16.5 years ill. In the first few years, I was diagnosed with POTS and GP (at mayo and vanderbilt). I have other symptoms of autonomic dysfunction, and increasing every year. In the first few years of illness, I connected with other POTS patients, and some had benefited from IVIG. I tried and tried to get it. No doctor would prescribe it. Insurance wouldn’t touch it. I had no resources to just pay for it myself. I have def signs of autoimmunity – several positive ANA tests but have none of the “typical” autoimmune illness’ doctors test for. Now I’m housebound and bedbound on some days. My illness gets worse every year. This story is encouraging… and frustrating. If I had been able to try it, I might not be as sick as I am today, nor lost 16 years of my life. And yet, I can hope someday I’ll find someone to help me try it. Thanks for all the great blogs Cort.
I think more studies will be critical in getting IVIG or other treatments to people who fit an autoimmune profile. Dysautonomia International is beginning a small trial and I believe Anne Oaklander is trying to get together a larger trial.
On the research side Dr. Grubb said a larger POTS antibody study was successful and at the Montreal Symposium Jonas Bergquist reported that a larger study was validating Dr. Scheibenbogen’s antibody results.
We do seem to be making progress. It will be interesting to see what the next five years will bring.
I saw Jill Schofield and she ordered TWENTY SEVEN vials of blood. (I took a pic!) I have POTS and absolutely did NOT think I had APS, but figured it couldn’t hurt to rule out as I’ve been sick for so long. Turns out I do have it. And MCAS. And she thinks Sjogren’s. And Celiac.
Personally, I don’t think I (and others like me) have all these discrete illnesses. I just think western medicine doesn’t know how to conceptualize the unifying, underlying mechanism.
Btw, Schofield’s no longer at ImmunoHealth. She’s started her own clinic, still in Colorado. (She doesn’t take insurance and can only work with you if you see her in person.)
Syd,
If you could let me know how to contact Dr. Scholfield I would really appreciate it. When I Google her it just comes up under ImmunoHealth. I’m in Colorado and would be interested in getting in touch with her. Thank you!
I wonder if this is it?
https://health.usnews.com/doctors/jill-schofield-593443
Does anyone know how to contact Dr. Schofield, the phone number in the link is a Kaiser Permanente general number – she doesn’t work at Kaiser.
Twenty-seven vials – that must a personal best! (lol)
I agree. I think there’s an underlying mechanism that ties all this together that hasn’t been found yet.
Thanks for the update on Dr. Schofield.
I’ve had all the antibodies testing. Even ones from Germany and lip biopsy for Sjogrens. At one time I had a positive factor with APS. But last check, it was okay. Also I have positive risk factors/markers on Factor VIII and Collagen Binding. (Too high, meaning too thick blood.) My neuropathy is progressing. My dad’s and his dad’s was also very bad.
I have autoimmune issues with vitiligo and alopecia. (Or are they??????autoimmune or symptoms and compensation???)
There is autoimmune in my family with Sjogrens, Gillan Barre and neuropathies.
I’ve been told that many times with compromised immune system function – you may show negative to something when it is positive. When you get immune system working better is when it may show up. This has happened with several of my friends using IVIG in regard to Lyme.
My dad did IVIG and it wasn’t helpful to him. Since I also have very low IGG levels – I’ve been offered it. But declined due to possible dangers associated with it. It carries same warnings as blood transfusions.
Before I had my lip biopsy I told my neuro at Mayo that I didn’t want to do IVIG if it was positive. He said you may not have to, in fact, there may be something else, soon, that would be better. That gave me hope. But don’t have clue as to what it is.
(Didn’t feel like I could ask.) But despite symptoms and it being in my family – I tested negative.
Issie
I hope there is something better soon. It sounded like Dr. Oaklander was on hunt for cheaper treatments as well.
Hearing that positive response was seen, even in those that have been ill for a long time, is great news! Thank you Cort
Yes it is. It suggests that something irretrievable has not been lost – even after all that time. What good news that is.
CORT HI: I´m 57 years old male. I come from a three generation with CFS/ME .After 14 years with CFS I got sick with parvovirus B19 and collapse with ME severely. I was submitted to do seven, treatments with inmunoglobulin without any improvement then, submitted with rituximab for two years also, without improvement. And only in one month with 60 mgr of deflazacort is that i have achieved a hug improvement.
Fascinating Paco. What I really love about your comment is it’s a drug I’ve never heard of or thought of but it worked. That’s the kind of thing that I know that Ron Davis and others and really everyone is looking for – some drug that’s available now which no one is thinking of – which could be helpful. I looked up Deflazacort
Deflazacort (trade name Emflaza or Calcort among others) is a glucocorticoid used as an anti-inflammatory and immunosuppressant. It’s a corticosteroid used in a lot of diseases.
It appears to have less side effects that prednisone. It was FDA approved to treat muscular dystrophy in 2015. The company then jacked up the price up 70’s..(It’s an older drug which you can get cheaply in Canada).
Congratulations on doing better on it. Is there a limit to how long you can take it?
Cort, I think we both agree with Ron Davis who says “I will work with anyone willing to help us solve this very complex disease”. In the case of deflazacort, which is an anti-inflammatory steroid, there is only one small study with prednisone in CFS/ME which, at the moment I don’t have the bibliographic citation, later I’ll publish it. The third deflazacort tablet had an extraordinary improvement overall the symptomatology; in depression, in fibrofog syndrome, pain of fine fiber neuropathy, in arthralgias, blurred vision, in the symptoms of very severe dysautonomia. But, for its collaterals effects it cannot be used for long periods of time, it is not a good idea to provide an immunosuppressant medication to those who suffer from immunosuppression as is our case. I had myself a great improvement during almost three months and then, collapsed again. The PCR for Epstein-Barr virus revealed a count of 100,000. I currently use 20 mg of hydrocortisone per subcutaneous route for three days, two to three times per month.
In 1988 prevent me from completing my MD in neurosurgery, since then I have been investigating about it. Because all of the above, I have access to treatments that not every patient has.I have tried IvIg,rituximab, naltrexone, deflazacort, neurotropin of 4 NU, piracetam, growth hormone, pyridostigmine, reboxetine, stablon, fluoxetine, ketamine, multiple vitamins, energizers as well as other twenty different medications. Among all of these, I consider the anti-inflammatory steroids as the most important which, has provided almost clinical cure.I believe that they can be an aid to solve the origin of CFS/ME and help to improve our symptomatology. Therefore, Cort I think it’s time to start a blog a blog about anti-inflammatory steroids.
Thank you very much.
Deflazacort, prednisone, cortisol… are all glucocorticoids. That means that, next to steroids they also have a strong action on increasing glucose levels.
Nor-adrenaline and adrenaline are not glucocorticols, but also have strong action on increasing glucose levels.
All of the above seem to have some advantageous effects on controlling our disease, that is if side-effects don’t overwhelm the beneficial part as they easily do.
I more and more see our generally increased blood glucose and pyruvate levels as no error to be undone, but being part of a strong anti-oxidant reaction of our body. Pyruvate reacts with peroxide to form acetic acid and hence scavenges ROS. Higher glucose levels increase throughput of the pentose phospor pathaway and increase NADPH production allowing for higher glutathione recycling.
Higher amounts of acetic acid in our blood could also react with ammonium to form ammonium acetate. That would help shed light on two things.
Despite often increased protein intake, very few patients have high uric acid blood levels. Next to reacting as anti-oxidant with peroxide, ammonium could be consumed to form ammonium acetate. Ammonium acetate is a (milder) diurethic. That could “help” causing our general lower blood volumes.
It helps shifting my opinion away from lower carb higher protein and higher fat non-keto diet towards a lower caloric non-keto diet with moderate but diverse protein and fat and many slow carbs. This supplemented by good hydration.
Avoiding NADPH consuming conversion from glucose to fat by removing excess blood glucose spikes during the day and avoiding deep glucose dips through eating slower carbs and “be activated” during the night seem to be key parts here.
Dejurgen,
I’m really interested to see you talking so specifically about glusoce here, as I have a terrible time keeping my blood sugar “up” (or up enough for my brain to detect it). And I’ve never know how common this symptom is in the larger CFS/ME group…or the POTS sufferers amongst us…?
But the harder I stick to the types of diet that are most often recommended for colntrolling hypoglycemia, and “adrenal insufficiency” the worse I do at having stable energy.
Since the first studies tying POTS (which I do have) to autoimmunity (which I also have) came out (the original studies highlighting damage to various adrenergic receptors), I began to wonder if my trouble with venous pooling (low blood flow), low blood sugar (or low cellular sugar, at least), and gut dysmotility (resulting in SIBO, etc.), could all be a “simple” result of damage to key adrenergic receptors, as they are responsible for smooth muscle contraction in the GI, smooth muscle contraction in the blood vessels, and play a role in both glycogenolysis (retrieval of energy from liver by conversion to glucose) and gloconeogenesis (retrieval of energy from adipose tissue by conversion to glucose).
This is what it feels like to me with glucose: I have no saving account to rely on, not even a checking account when I’m at my worst; only the cash in my pocket (or the food in my belly).
This set up also seems like it would produce symptoms almost identical to adrenal insufficiency. In that condition, the adrenals have stopped producing enough adrenaline to control those same functions: raise blood sugar, constrict smooth muscle in blood vessels. Perhaps in POTS due (at least in part) to damage to adrenergenic receptors, the adrenaline/norepinephrine is just not getting the message through (so the same syptoms of adrenal insufficiency surface). This would also account for the heightened level of anxiety with hunger and standing (as the body generates more and more norepinephrine to try to stimulate the non-damaged receptors).
Also maybe, with low blood flow to the brain (for any reason, but certainly including POTS), our serum blood sugar would need to be kept marginally higher to deliver enough to the glucose starved brain (I think it uses 30% of our total glucose.)
Anyway (my point is), I find it interesting that I’ve come to the same conclusion about the best way for me to eat, as you have, given completely different rationale. Lots of vegetable for fiber and slowed breakdown of carbs, moderate complex carbs that have been soaked/fermented/prepared for ideal digestability (this move allowed me to put all grains back in, which was a big boon to my energy), moderate protein, and a little healthy fat at each meal.
So, not paleo, not AIP, not a typical “blood sugar solution”, but something far more effective (for me).
I’d love to hear more of anyone’s thoughts on this subject, as figuring out this glucose/dietary aspect (the possible causes of dysfunction, the best dietary balance, meal size and timing solutions) in the context of POTS/dysautonomia is hugely important for me.
Anyone interested, I can be reached at martha@iamtheelephant.blog
Thanks!
@MarthaLauren
“Also maybe, with low blood flow to the brain … …I think it uses 30% of our total glucose.)”
I reached my first “breakthrough” in improving my health by figuring out that upward flares happened only if I used a nor-adrenaline increasing med (for pain control) in combination with mobilization exercises. I believe mainly neck and upper back mobilization was the most important. Doing either separately did not help any single bit. WARNING: it caused extremely huge and dangerous adrenaline rushes so don’t rush in!!! And consult a good physical therapist to guide you with these exercises if you’d give it a go. Poor ones can block key nerves in the neck!
I believe the source of the problem was the upper back and neck muscles further “strangling” my already tight (returning) main arteries from my head to my hart, limiting blood flow to the brain too much. As such, the brain is in constant risk of shortage of both glucose and oxygen despite having sufficiently high blood glucose levels. Any increase in effort then can whack you down (“little reserve”).
In addition I did limbs mobilization exercises, mainly legs and not to forget feet. This improved blood reflow to the hart and hart pre-fill with me considerably and allowed again healthy, low and stable hart rate both in rest and while doing easy exercises. I would not be surprised you never have a reasonably low hart rate even in rest or sleeping.
All mobilization exercises I do are the very very easy variants with very low force and in tiny series, spread over the day. Effect was relatively quick. If you’d give it a go I’d be interested in your experiences both positive or negative; PM is the best option as I will not continue to check this blog for much longer.
Where in the world is there a Physician that is knowledgeable about Fibro.CF ? I am in the Charlotte, N.C. area. All I get from my GP is “I don’t know, could be” ??????
Bettina, have you tried Hunter-Hopkins Center in Charlotte? Dr Vince Hillman is taking over Dr Charles Lapp’s practice there.
Judy had trouble posting so I am putting her interesting comment in:
“It’s time for me to speak up. My ME/CFS of 20 years is on the mend, finally! I’ve been on a self-healing journey all this time, and have achieved lots of improvement. But I’ve finally found the missing link: Anthony William, Medical Medium.
Many will scoff, and already do, but his protocol is the answer, nonetheless. And he’s been at it for 45 years. But now that he’s written books, the world gets to benefit from his and Spirit’s knowledge.
I trust him completely, and know without doubt that all my illnesses and ailments are virus caused. It’s not an autoimmune disease, and neither is my Hashimotos Thyroiditis. Not only that but antibodies are our friends. You see, the body would NEVER attack us, it Loves us Unconditionally. I can hear most of you laughing at me, but that’s OK with me. Antibodies are one way the body works to protect us from the viruses. His knowledge is decades ahead of science because it comes from Spirit, and not just any Spirit!
Anthony has helped hundreds of thousands of people fully reverse their conditions, even ours in its severe form, even MS, even cancer. Some of my symptoms are already better after just 3 weeks on one of the protocols! And I’m slowly getting off my thyroid medication of 26 years! He was the first person to identify EBV (NOT found in blood tests after the EBV migrates to our organs) as the key culprit 30 years ago. Many practitioners steal his ideas. He’s attacked and judged all the time. He doesn’t care. He does this solely for us.
And guess what folks? Hippocrates was absolutely right-on when he said “Let food be thy medicine, and medicine be thy food.” Now Anthony is here to show us exactly how to do it! If I’m lyin I’m dyin. But I AIN’T dyin! I’m HEALING. I’m HEALING! I Am Getting Well!!!
May this post lead others to his books! http://www.medicalmedium.com
With Much Love”
I’ve noticed similar comments like this all over the web. This Anthony guy is a fraud and likely dropping these comments himself. He is spamming pages with comments so you buy his products. He claims he can diagnose anyone without even seeing them. He just tells everyone their issues are Epstein Bar Virus. He says god gave just him this gift and he is never wrong. Avoid this at all cost ! It really is a shame that some people target the sick and vulnerable to fill their pockets. Anthony is a digesting human being.
Hi Cort,
Thank you for this insightful post; I plan to have the tests and will be working with my rheumatologist to order them. My question regards the IVIG treatment; although there seems to be improvement of symptoms, do we know if the antibodies are still being produced? In other words, is this a permanent fix or, after some weeks/months, will the symptoms return and require yet more IVIG therapy simply to keep the symptoms at bay?
Thank you,
Michael
Dear Cort and Healthrising readers,
Thanks for these posts. I have very recently been to see Prof. Dr Kenny de Meirleir in Brussels at his clinic. After a wide range of tests he has diagnosed me with CFS/ME – specifically hypogammaglobulinemia (which is likely to be secondary – effect of elastase), with increased chemokines, very high NK cells indicating chronic viral infection, inflammation, hypoxia and high sCD14.
As well as daily Valgacyclovir, bi-weekly B12 injections, omega 3, Choline-DHA and three weeks of Flagyl, he has prescribed weekly subcutaneous injections of IVIG – at a low dose from what I can tell of 165 mg/ml, 6 ml per week. In Europe I think this will cost about 600 euros a month and my insurance doesn’t cover it. I can pay it for now, but probably not indefinitely.
I have two questions.
1. Has anyone ever tried using IVIG in this way and what was the effect/outcome?
2. What are the possible dangers of taking IVIG? I have read some people say there is none and others suggests they are significant, but I can’t get a clear picture.
Thanks!
Hi, I’ve been injecting sub Q immunoglobulin for a month. I don’t notice any effect, I’m afraid. However, it’s not intravenous and it’s possibly not been long enough to tell.
This all is amazing research and makes so much sense and is a relief to read. Pots is so debilitating and behaves like an autoimmune condition yet MD’s dont recognize this yet.
How can one get tested for these AA?
My current rheum/MD/neurologist don’t seem to know anything about it or have access to the labs
Check out the map on Dysasutonomia International for doctors experienced in diagnosing these conditions in your area:
http://www.dysautonomiainternational.org/page.php?ID=14
Good luck!
Dr Artur Fedorowski and colleagues in Sweden conducted an interesting search for POTS biomarkers recently:
https://pubmed.ncbi.nlm.nih.gov/36414707/
He also did a video lecture about the study:
https://vimeo.com/478895955