If the positive autoimmune findings continue, IVIG treatments might become more available for POTS / ME/CFS and maybe even fibromyalgia patients in the future.
Suzi’s story is the first in a series of blogs exploring the possibility that the autoimmune findings will open the door for IVIG (Intravenous Immunoglobulin) treatment in chronic fatigue syndrome (ME/CFS), fibromaylgia (FM) and postural orthostatic tachycardia syndrome (POTS).
IVIG is an immune treatment mostly used in autoimmune diseases and as something of a last gasp when nothing else is working. It’s expensive and hard to get, but if you’re lucky enough to be able to get a hold of it, it can, at times, make a major difference.
This is the tale of a very enterprising mother and her very sick daughter. Suzi’s mother kept up on the latest research findings and reached out to doctors and researchers and ultimately got Suzi a chance at IVIG. The fact that she was able to achieve this in the U.K., of all places, was astonishing – and hopeful. This is hers and Suzi’s story.
Suzi’s Story
How healthy was Suzi before she got sick?
Suzi got sick very suddenly at the age of 18. She had some health problems, suggesting she may have had a weakened immune system growing up, but was very well immediately before this and regularly played sports and had competed at the national, county and school level.
How did she get sick and how sick did she get?
Suzi’s first symptom – dizziness – came not long after an HPV vaccination.
Suddenly Suzi had an alarming prolonged episode of dizziness and was hit with a feeling of nausea. Her stomach felt too full to eat more than a small amount; she had stomach pain, severe fatigue, headaches, dizziness, feeling flu-like and generally felt unwell.
This continued for several weeks and she visited the GP pretty much every week. First, she was told by her GP that she had a virus, then at another visit, that her symptoms must be due to exam stress. After five weeks she had a test for glandular fever, which was negative.
Shortly after that, she had a longer episode of worsened dizziness (she was unable to stand) and then her vision went. From that point on, all of her symptoms became much worse; she could barely get out of bed or off the sofa. We went back through our diaries and found that exactly two days before each of the episodes of dizziness she had received the first two vaccinations for HPV.
In the nine years since then, her symptoms remained the same but varied in severity. She has had times when she could do more but has also had three unplanned hospital admissions, periods when she’s needed to use a wheelchair, and years when she barely left the house. She spent a year bed-bound.
What were her experiences with doctors?
Initially, the GP said Suzi must be depressed, because she felt so unwell that she cried in the doctor’s office. When we resisted that diagnosis, she was told she had post-viral fatigue syndrome, which became chronic fatigue syndrome (ME/CFS) after six months of being symptomatic. She followed all the advice about pacing and graded exercise but nothing gave relief or resulted in any improvement.
During the years of her illness she has been seen in the following hospital clinics: Infectious Diseases (for chronic fatigue); Ophthalmology, Cardiology, Endocrinology, Immunology, Gastroenterology, Rheumatology, Migraine, Neurology, Neuro-physiology, Neuro-gastroenterology, Neuro-immunology, Sleep Neurology, Autonomic Neurology, Neuroscience, in addition to visits to the Emergency Room in no less than 6 different hospitals.
From the beginning, getting a good diagnosis was difficult.
Suzi received many different diagnoses ranging from ME/CFS to hypermobility syndrome to delayed gastric emptying to encephalopathy to migraine with aura to POTS. We found that the various consultants we saw seemed only to look at their specialty and not the bigger picture, hence the various diagnoses and drug treatments that might improve an individual symptom but generally made other things worse.
Several drugs caused severe reactions that led to hospital admissions. We lost count of how many doctors said that her test results were fine, so there was nothing ‘actually wrong’ and those who said it was psychological and she just needed to push herself.
A 7-day ECG was the first indication of autonomic dysfunction, and autonomic function tests four years after becoming ill led to a diagnosis of POTS.
We were very lucky to find a local neurologist who knew about autonomic dysfunction and also about autoimmune disease. The discovery of some low level antibodies, usually linked to paraneoplastic encephalopathy, led to treatment with plasma exchange and steroids.
The plasma exchange on its own gave immediate improvement, but this only lasted for 6-8 weeks at best before symptoms rapidly returned. The steroids caused their own problems and were not well tolerated.
Over time, when the antibody levels returned to normal, it was decided that they were coincidental and not the cause of Suzi’s illness. No further treatment was offered.
How did Suzi get access to IVIG treatment?
At a particularly low point in early 2016, I was reading a paper about gastrointestinal dysmotility following HPV vaccination (Rebecca Chandler, Uppsala Monitoring Centre) whilst Suzi was in hospital with continuous vomiting and weight loss.
Gastrointestinal problems were early symptoms in Suzi’s illness and I was interested to read in this paper about antibodies to adrenergic and muscarinic receptors. A Google investigation showed that tests for these antibodies are not available in the UK.
More investigation led me to Professor Jeanne Hendrickson at Yale University and she was able to direct me to Berlincures who agreed to test Suzi’s blood as part of their research program.
Suzi’s doctor became more receptive after her mother provided research studies.
(Berlincures is a German Life Science company that specializes in the research and testing of antibodies that it believes play a role autoimmune cardiovascular diseases. A drug to neutralize one of these autoantibodies is in clinical trials now.)
We had to get a private phlebotomist with a centrifuge to come to our house and send the sample by courier to Germany on dry ice. Suzi tested highly positive for beta-2 adrenergic and muscarinic-2 antibodies.
With that, we went back to see our local neurologist who rolled her eyes when we mentioned blood tests and Germany. However, once we explained that Berlincures is not a commercial lab and showed her research articles from Dr. David Kem, Dr. Artur Federowski, Professor Jeanne Hendrickson and Professor Carmen Scheibenbogen, she was more receptive.
After talking to colleagues, and taking into account Suzie’s previous response to immunotherapy, she suggested another course of plasma exchange initially to see if there was improvement, while monitoring her antibody levels to see if any correlation existed.
We were probably lucky that the plasma exchange machine was out of operation and there was already a long waiting list, so Suzi was offered a course of IVIG.
What effects did the IVIG treatment have?
From the first infusion Suzi could see improvement – her gastrointestinal symptoms, in particular, improved immediately. That first infusion was two years ago this month. Unfortunately she developed aseptic meningitis and had a short hospital stay to resolve that.
(Aseptic meningitis causes the tissues covering the brain and spinal cord to become inflamed. People with migraines have an increased risk of aseptic meningitis when given IVIG. A rare side effect of IVIG, aseptic meningitis can have serious consequences, but most people recover without issue over a week or two. Slower infusion rates are believed to reduce the risk of aseptic meningitis.)
Suzi’s mother overcame many obstacles in getting her daughter access to the drug.
The following infusions were given much more slowly, over two days. We saw improvements month after month and Suzi got stronger. The course finished in June 2017, and there was an initial dip in her condition after the last infusion; however the improvement is continuing and she is now able to work part-time, is driving, has ridden a bike for the first time in nearly 10 years and she walks for an hour every day.
Migraine with aura continues to cause problems and she’s had botox treatment to try to help this. She still has POTS symptoms and days when she is not able to do much, but the improvement really is significant.
We sent samples to Berlincures throughout the treatment and they found her antibody levels remained highly positive. Berlincures have never recommended IVIG and say that Immunoadsorption is the best treatment as it will remove the antibodies; however, that is not available in the UK. Speaking to researchers in Scandinavia and the USA, it seems that IVIG disrupts the activity of the antibodies but doesn’t remove them.
Unfortunately, we have met resistance in the UK to any suggestions that POTS can have an underlying autoimmune cause and recently Suzi has been told that her response to IVIG was probably the placebo effect. One neurologist wrote, “I have never personally seen a patient with these antibodies ...“ and another, “We don’t test for these antibodies because they are not diagnostic or helpful”. So we are grateful to the researchers who are working so hard on autoimmunity and how to treat it, and to Cort for keeping the patient and medical audience updated.
Suzi’s mother had reached out so much and was so proactive in her attempts to find help for her daughter that I asked if she had any background in the medical field. It turned out that she hadn’t! She reported:
I don’t have any experience in the medical field, I’m a mum of three who works in Finance. As you suggested, I have just plugged away, contacted people, read a lot and learned a lot – alongside other mums who have found themselves in a similar situation.
I found it hard to accept that someone could be so unwell, yet all tests, other than autonomic tests, came back negative – and I badly wanted my daughter to have her life back.
I’ve been in touch with some very helpful researchers and doctors in Germany, Scandinavia and the USA. It has amazed me that you can correspond by e-mail with some highly respected doctors in other parts of the world (and many reply). My questions have been answered with good suggestions and offers of help and they are always pleased to get an update. I have also met several of these doctors when they have come to London. They have really kept us going.
Suzi’s success notwithstanding, her new doctors refuse to prescribe IVIG, in part because the NICE guidelines do not recommend it.
Will Suzi be able to keep up with the IVIG?
No, unfortunately not, so we really hope that she won’t relapse. We have moved recently and asked the neurologists here and they have said absolutely not because there are no NICE guidelines for the use of IVIG for dysautonomia and not enough published evidence that the antibodies cause the symptoms. So we need doctors in the UK to know more about the antibodies and the current research.
Conclusion
Suzi’s story suggests that IVIG presents an intriguing treatment possibility if you can get it. The good news is that with autoimmune and small fiber neuropathy findings showing up in ME/CFS, and with IVIG trials looming in small fiber polyneuropathy and POTS, it may be more possible in a few years to get a better shot at this expensive drug. With recent clinical trial findings, and with Dysautonomia International funding the first IVIG POTS trial, hopefully Suzi’s doctors will get he evidence they need to give her another round of IVIG should she need it in the future.
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
This sounds a lot more like Post Gardasil Syndrome than MECFS. That syndrome also features dysautonomia. IVIG is a typical treatment for the autoimmunity induced by the vaccine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406435/
Interesting. I didn’t know there was a name for it. Wait for the next blog, though, which will show that a broad condition of autoimmunity appears to be present across a variety of diseases which effect the autonomic nervous system. Maybe PGS is one of them….
Thank you for another great article Cort. I was going to respond to the RCCX article but this really struck a cord. Each of the last three has been extremely helpful, even for someone far less knowledgeable than most who post. Although I have more than 20 years of personal experience with CFS and remain hopeful that research is getting closer, it’s my son’s illness that drives me, just like Suzi’s mother.
It appears to be pointing toward a condition of autoimmunity that affected his ANS after an emergency surgery. However, many questions remain –Is it genetic and if so, is testing available or helpful? Could it be a ‘dormant’ tick-borne infection or other virus triggered by a steroid, given in a compromised immune state? Could it be Congenital Lyme, reset by infection, causing POTS/Dysautonomia/MCAS? Genetic CVID?
Too many unanswered questions and not enough access to get closer to answers and potential treatments. IVIG has been very helpful to many with Lyme and other tick-borne infections as well as CVID. Where do all there variables intersect? Thanks again for your commitment to covering and reporting the topics that are so critically important to so many.
Thanks. So many possible connections but the one that stands out for me is the possible infection connection – an infection that possible trips off and autoimmune disease which affects the autonomic nervous system.
Your comment brings up another question posed by someone at the Dysautonomia conference – could the steroids given to kids with infectious mononucleosis be weakening their immune systems enough to bring on ME/CFS?
(The next blog is even better IMHO :))
My CFS doctor gave me IVIG back in the late 1990s for a period of several weeks and I definitely got stronger. I have pretty classic ME/CFS. Then it became unavailable generally and the treatment stopped, and I slowly deteriorated again. I never got back to my pre-morbid state but the IVIG weekly definitely helped. Seems alas to be unavailable now.
There have some significant shortages of the drug making it hard at times to get it but somewhere I read things have gotten better now. Hopefully so. One group is working on producing a synthetic version of it.
My hope is that new testing will help more over time get the drug.
Some people have had luck getting and using IM IG.
Usually 2gms/wk for 6 weeks.
It is also a lot cheaper.
What dosage and schedule did she have for the IVIG?
Isn’t IVIG a blood product, produced from the blood products of millions of donors? Not actually a “drug” as we normally think of it. My friend was treated with IVIG (after other treatments failed) for her autoimmune disease and had to have it every week at $10,000 per treatment…., so that is probably one of the reasons that all the evidence of autoimmunity for CFS is ignored – no one wants to pay for that for another 17 million people. In fact, one of the reasons her insurance paid for her stem cell transplant which did in fact “cure” her, and others with autoimmune disease, is that the one time $100K cost of the stem cell transplant was a bargain compared to the $56,000 every year for her IVIG. We won’t get IVIG, and it won’t cure us if we do. Better to focus on getting ME/CFS into the clinical trials being done by Dr Burt at Northwestern. So far, huge success with RA, Lupus, Chron’s, and most especially, MS.
I don’t see any treatment as kind of a blanket thing for a chronic fatigue syndrome.
Some people will get access to Rituximab and some people will get access to IVIG and some people get access to immuno adsorption. It’s going to be a mixed bag. Some people will improve a lot some people approve moderately and some people will get healthy.
Dr. Kaufman, for instance, is having success with Rituximab in patients with positive autoantibody results.
As you’ll see in the next blog, it is actually possible right now to get access to IVIG. As Suzi’s case demonstrates you need the right doctor who will give you the right tests and then I guess you pray the insurance company will pay for it.
What is Dr. Burt doing, tho? It sounds promising.
My son is suffering terribly from CFS brought on by parvovirus B19. He has arthritis in his knees as well from that. We tried unsuccessfully to fight the insurance company, he needed to be severely anemic associated with bone marrow suppression. He is currently trying to continue his studies at U Chicago after a 3 year break due to his illness. I’m so glad I scrolled through the comment section! I’m going to try and contact Dr. Burt at Northwestern! If you have any contact info please let me know!
Thanks
If she responded so well it could also be Genetic Born CVID from each parent…ME/CFS is widely misdiagnosed in numerous. She could also have a Genetic type of Small Fiber Polyneuropathy that respond to IVIG
Thanks. I’ll bet if they tested her for SFPN she would have had it. According to the next blog and to Dr. Goodman’s report from the Dysautonomia Conference IVIG works pretty well in POTS too. Study results in ME/CFS have been mixed.
Cort…I was diagnosed in 1998 with Ehlers Danlos Syndrome as well as ME/CFS and Fibromyalgia. I have not seen a specialist for the above three illnesses since then. I read somewhere that EDS is really POTS…is that true?
No it’s not but EDS – a connective tissue disorder – appears to be common in POTS. That’s not surprising because the blood vessels contain connective tissue. If the blood vessels have connective tissue problems they may not be able to constrict or tighten properly when we stand. That sends blood pooling in the legs – and causes the heart rate to jump – hence the POTS connection. While EDS and POTS are connected not everyone with POTS has EDS, though.
Alpha-Gal is also now an autoimmune condition so anyone with MECFS should test for this to rule in/out I know IVIG was used extensively in ME/CFS end results it did not help it could also be the ones who respond do not have ME/CFS EDS etc but something else…I was checked for CVID IGG IGA IGM he said was fine & he said I do not need IVIG. It also is a very hard medicine to take lots of issues can occur even Death & also could it contain any Mammal ingredients in the process of making IVIG I know it is a blood product but in labs, they add things as well…
Hi Debbie,
EDS is genetic although the type (Hypermobile Type or Type III) has not been linked to a genetic marker so far as opposed to the 13 other subtypes (14 are listed on ehlers-danlos.com in some areas and 13 in others).
POTS and MCAS both are suspected triggered by the virus. The three are so common they are referred to as a trifecta or triad. If you have hEDS (hypermobile type) They are conducting a Hedge study currently of 1000 volunteers. I am trying to become part of it as well. They stated last I heard, I believe last week, 720 participants signed up.
I have also been diagnosed with ME/CFS, CPS, Migraines, Endometriosis, etc.
I greatly appreciate these articles. I have been sleeping 2/3-4/5 of some days and I am barely surviving. I want to thrive again and get my life back.
Always interesting information! Thanks.
Curiously my daughter @13 had a HepA/B shot. Seemed to have a thyroid inflammation in the following days but contracted a severe virus? before I could get her to the doctor.
Many doctors visits…many tests…4 weeks of exhaustion, finally went to school for one day to catch up with friends, still not particularly well…..ADMINISTERED THE FIRST HPV VACCINE by our city council at school on that fateful day!
10 years later….she is still exhausted!
I, like many other mothers, seek endlessly for an answer.
The HPV vaccination question is a puzzle. One study (https://www.ncbi.nlm.nih.gov/pubmed/29061232) found one POTS case for every 6.5 million vaccinations – no increased risk! Ditto with ME/CFS – https://www.ncbi.nlm.nih.gov/pubmed/28648542
Other studies disagree – https://www.ncbi.nlm.nih.gov/pubmed/28730271
Articles like this make me aware of how fortunate I was in the past with doctors. I was diagnosed in Australia at the age of 39, back in December 1990. The doctor who diagnosed me tried out all sorts of things on me, things that were not talked about here for years, including basic things like CoQ10. I have an email from him dated June 2005 where he talks about Lyrica (pregabalin) and Modavigil. By then I was living in the UK and only saw him in his specialist unit (health check – looking for illnesses before they occur) every two years when I went back on holiday.
Relevant to this article, the GP I saw for a year in Australia back in 1992 gave me three sessions of immunoglobulin. I still remember him saying ‘Is it safe? Well, I’d be prepared to give it to my sister.’ I was happy to try it out but did not feel any benefit.
Which criteria would indicate that the immunoglobulin would be a possible form of treatment for chronic fatigue syndrome
Sorry to be a tease but it’s rather complicated and I’ll cover that in the next blog. It involves testing positive for a range of autoantibodies – some of which are rarely tested for – and being diagnosed with POTS, small fiber neuropathy or other disorders.
I don’t know how easy it is to get those tests done. I’m trying to get in touch with the doctor who wrote the paper.
There’s always the rather eerie recognition that the antibodies in IVIG come from at least a 1000 donors…..but the stuff is used in enormous amounts on medicine without contamination problems.
It’s possible you weren’t able to take it long enough for it to show effect. The next blog will show that for some it can take quite a few sessions for it to have an effect.
HI Cort,
I agree with some earlier comments, it does not seem to be the typical ME/CFS case. However, what a wonderful result.
I have had ME/CFS for 15 years and now about 80% recovered. I have my life back, although I am cautious saying ME/CFS has left me.
It took me 13 years before I had enough energy to run a short distance with out crashing. At one stage, while I was on an supervised exercise program, an hour a week in a Gym. I would drag myself home and be on the couch for 3-4 days. The physio said, “you are like my MS patients” and he was right! Needles to say it didn’t help, even after 6 months, so much for the PACING exercise program still suggested by some Practitioners!
After reading Bruce McKenzie’s book on Pacing. He talks about your energy being like 100 marbles in a glass jar & they are your daily supply. You allocate a number of marbles used in performing a task. Having a shower, 3 for example. Allocate marble for each task you perform during the day until you go to sleep or use your 100 marbles! It is a system where you make up the number of the marbles for each task. It does work and you soon realize where your energy goes.
I now constantly Pace myself, ha, ha, ha. This has been an essential step towards my recovery.
Through this technique, I learned to read my body & own energy levels it helped me understand my energy capacity & myself. I learnt to be kind to myself.
I think many of you know there is no quick fix here. I my self have been very proactive and seen the best Doctors & Alternative Practitioners both in Australia & the UK where I lived for 3 years.
Over that time I have spent over $100,000 mainly on treatment outside the medical treatments covered by medical insurance. I have done a lot of research in the past few years.
It still floors me how often I come up against a brick wall within the Medical Community, you end up educating them!
I only wish I had a simple remedy for ME/CFS but I did not find one, nor one suggested!
However, I have adopted a holistic approach, did everything I could to bring my life into balance, finding a sympathetic, proactive local GP, supplements, diet, exercise, meditation, pacing ETC. These are essential for a quality life in general but partially when you are feeling so unwell.
For me ME/CFS was a wake up call a chance to review my life and make the necessary changes.
I really appreciate your comment Howard. You remind me of Dan Moricoli who used pacing and very gentle, slow “exercise” with Dr. Klimas to return to full health. Meditation and yoga also helped. It was a long slow approach but it worked for him. I wish I had his discipline. It makes me wonder if things would have been different. I invite you to share your story on Health Rising’s Recovery/Recovering stories. You’re not the first to be helped so much by pacing, meditation, supplements, etc. If the stress response plays a key role that approach makes sense.
https://www.healthrising.org/forums/recovery-stories/categories/mind-body-pacing-exercise.125/
My son’s story is one in the same as Suzi’s. Extremely healthy prior to HPV vaccine, and totally incapacitated following it. All test results cam back that he was healthy. On year in, a neurologist at our local children’s hospital gave him 4 nights of IVIG therapy with a DX immune induced encephalopathy. The results were amazing. His debilitating brain fog lifted after the first night. He had 6 amazing of his old wonderful life back. But then I could see it return, loss of smooth muscle control in the morning, the inability to wake from sleep and the brain fog. We have amazing insurance, IVIG was approved 2 more times. But it only helped for for a few weeks.
Isn’t that something – despite improvement IVIG was not approved afterwards. Did they not feel he was improved enough? This paper suggests, if I’m reading it right, that longer term courses are often needed.
https://www.tandfonline.com/doi/abs/10.1586/1744666X.2015.1079485?journalCode=ierm20
I have acute onset post-viral ME/CFS that started in 1998 (20 year anniversary coming up in a few weeks…yay!) Among other symptoms, I have recurrent sinusitis and now mild bronchiectasis, which are treated as real diseases by doctors, while ME/CFS is not.
Because I did not produce a normal amount of antibodies in response to a Pneumovax vaccine, a sign of immunodeficiency that can progress to CVID, a specialist MD got my insurance to pay for IVIG (Gammaguard) every four weeks in early 2016.
I felt great after the first infusion, with increased energy for about a week. I then reacted very badly to IVIG after that. Basically, I became even more severely fatigued, had extreme difficulty walking, and my cognitive function worsened badly. Basically, I crashed and had a severe CFS relapse after each of three infusions before I decided this particular cure was worse than the disease and so I stopped the IVIG.
It took me about six months to return to my pre-IVIG baseline, but I am sicker now than I was 3-4 years ago. My doctor thought I might be reacting to the particular brand of IVIG he was giving me and that another brand might work better. I didn’t want to risk becoming a full-blown vegetable, so didn’t follow his advice to try a different brand.
So just a word of warning – IVIG does not help everyone with ME/CFS. It actually sent me into a tailspin. Later, the head pulmonologist at Weill-Cornell told me it is not uncommon for people to react badly to IVIG and that some people cannot tolerate it. Susan Levine, in contrast, says some of her patients have been greatly helped by it, though it is rare for insurance to cover it.
The only drug that has helped me a bit is Xolair, but my insurance company won’t pay for it anymore.
Thanks for sharing your experience Mark. The brand situation is interesting. You wouldn’t think a brand could effect how you would respond but there are apparently significant differences.
https://www.tandfonline.com/doi/abs/10.1586/1744666X.2015.1079485?journalCode=ierm20
the brand actually can make a huge difference. I found out I had CVID 8 yrs ago. This was following a bad bout of the flu, months of sinus infections, gut problems etc. I was put in IVIG and had bad reactions every time. I tried many different brands to see if it would make a difference. None did, so I stopped treatment. I too got much sicker and asked to be put back on IVIG 6 months ago. the difference to me was breaking up the dose size, split into 2 smaller doses every 3 weeks instead of one big dose once a month. I am now tolerating it well, but as of yet, have seen no improvement. No colds though, so that is good.
Good luck! That’s actually exactly how Dr. Schofield – blog coming up shortly does it in POTS and autoimmune dysautonomia. She starts off with 1/4 g/kg a week – does that four times a month, and then slowly works her way up from there to the whole 1 g/kg a shot each month. How much are you getting monthly and how long have you been getting it?
Hi Cort
Can you enlighten me regarding the book by Bruce MacKenzie? I can’t find it anywhere online and am in need of a pacing guide – even after 25 years of ME/CFS!
Very interesting article and great for Suzi and her daughter. But how depressing to hear about the Uk medical establishment and their readiness to dismiss symptoms as psychological, or successful treatment as likely to be a placebo effect…
Yes, nice to have an enlightened doctor over there who looked at the research but then sad to see others fall back on the default – placebo effect (sigh)
I don’t know of Mackensie but maybe it’s Bruce Campbell – his website is the go to for all things pacing. Bruce got well during pacing…The website is called CFIDS Self Help – http://www.cfidsselfhelp.org/ and the book is Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope Kindle Edition You can find the kindle version at this link https://amzn.to/2McEKrF
Very promising, I really want to get tested.
Do you think that they would be open to testing more patients? Has the research finished? Did Suzi need to be recommended by anyone for the research? Would it be best to contact them directly?
Many thanks.
I was ordered weekly at home IVIG treatments by a doctor treating “mold exposure illnesses” (I’d worked in a moldy building when I became ill), 12 weeks in a series and after each series I would feel much improved. Within a couple of weeks I would become very ill again and another set of 12 doses would start. I had 32 doses / weeks at $7500 each. I refused any more treatments as I didn’t see a ‘cure’ coming. Later I was found to have Fibromyalgia and Dysautonomia/POTS. Previous to the mold exposure I’d only been told I had “anxiety disorder”, we now know it was POTS that’s symptoms increased in that building. My insurance was very kind. I feel it was wasted money (in my case)
This is a pretty ridiculous response on the part of practitioners since it’s given for Guillain-Barre which is an autoimmune response to a virus and it’s given for steroid refractory conditions. I utilize small amounts that I pay for out of pocket and it’s very helpful. It stabilizes the immune system and that appears to be due to a long chain sugar. In addition the passive antibodies can be helpful in strengthening the immune system though those only last 3 weeks or so. I hope she can continue to get it but now that she’s off she should test her subclasses to see if she is deficient as that can be an indication for IVIG.
Hi Jill, would you care to comment on “It stabilizes the immune system and that appears to be due to a long chain sugar.”
After reading on Healthrising that someone had help for sleeping better by carb loading before the night, I did find it rather strange. But when one is ill enough one is willing to try about anything.
I started slow by taking a few times half a coffee spoon of honey spread over the night. Didn’t help my sleeping a bit, but oddly enough strengthened my immune system a fair amount.
Cort.
Is IVIG the same as the Gammaglobulin IV’s that Dr Peterson prescribes?
I have IV gamma every week for 4 or 5 years in the late 80’s early 90’s. It wasn’t a cure but the benefits were worth the time and $$.
Thanks
Yes. The Mayo Clinic website calls IVIG gamma globulin as well.
Hi Cort, could this ivig be at all related in content or effect to the gamma globulin shots that our doctor would give my father when he would get postviral fatigue back in the 60’s? He would also give him b12 shots. My father had had a “nervous breakdown” in 1950 for which the main symptom was he couldn’t stay out of bed very long for about 3 months. Sounds a lot like cfs doesnt it. I was 5 and managed to shut the door on my 2 yr old sister’s finger which got him out of bed and temporarily cured our dad’s nervous breakdown. They had to rush my sister to the hospital to sew the tip of her finger back on–happily it healed well since she became a gifted pianist. But through my childhood i remember out dad getting wiped out by every virus that we kids would bring in and needing those gamma globulin and b12 shots to get back up and be able to go to his engineering research job which required a lot of walking to different areas. My dad died of heart failure in 1981, five years before I got very severe and prolonged postviral fatigue, eventually called cfs. So not able to ask him about it. But have often wondered about those gamma globulin shots he had in the 60’s, and maybe 70’s (i was no longer living at home so don’t know), that seem to help him a lot. Thanks for all your research and wonderful writing. Ruth
IVIG is gamma globulin to my understanding so, unless I’m wrong, he was getting the same thing but probably intramuscularly. Dr. Klimas reported that in the 80s and 90s she used intramuscular gamma globulin quite a bit but after the Gulf War it’s price so hard and it was more difficult to get.
Hi Kristin
You don’t have the iv gamma anymore but benefits remains or not?
Sadly it seems to me that apart from the illness itself the biggest danger to those people who are suffering from this dreadful and debilitating illness is the arrogance and lack of compassion from the Doctors in the UK. In all my dealings with the Doctors whilst pursuing some kind of treatment for my Fibromyalgia I have been consistently ignored or just dismissed out of hand especially when the conversation went a little out of their field of expertise, this was because of their arrogant belief that if someone as talented as they thought they were didn’t know the answer then nobody would.
When it comes to the NHS I’m afraid all I see is an organisation that through its incompetence and the arrogance of some of its staff is causing more suffering than is imaginable.
Seeing as Suzi still has migraines, connective tissue disorder and POTS, she might want to investigate further the two articles you posted on CSF leaks.
The 2018 Dysautonomia Conference Pt. II: Could You Have a Spinal Fluid Leak? An ME/CFS, POTS, FM Perspective
Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS?
Nice catch. It’s so interesting the many possibilities that are showing up.
I have taken Hizentra for some time. Initially I took it intravenously on a monthly basis. It would unbalance me. Now I take it weekly subcutaneously. The big change was to combine it with predinisone. It has made a huge improvement in my life after 4 years of suffering.
Is it possible that other vaccines could cause similar results? I haven’t heard anecdotal stories of such but in hindsight my daughter has had ME/CFS since she was about 3 yrs of age. Suffering from PEM for several days with exertion. Always chalked up to poor nutrition or something she would outgrow; symptoms of POTS in middle school which was ruled idiopathic tachycardia. Finally diagnosed with POTS in high school and then EDS.
Just wanted to leave also a short note here I read an article of a young Woman from Australi she to was diagnosed with EDS3 Ehlers Danlos Syndrome turns out recently she was also diagnosed with the ‘ALPHA GAL
MEAT ALLERGY’ so it is something that people can now ask to be screened for as well I am now trying to get tested I am hitting roadblocks because all the Labs thus far I have contacted request an MD referral
to get tested even in the UK & I do not have a Doctor, also the symptom of ALPHA GAL can be a drop in blood pressure as well I have even seen some even test Negative but on other tests, they are Positive to these
Allergies & most are Allergic to Milk Dairy combined it is even in Sugar being processed in factories from the Bone Spurs & countless things the list is miles long. Meats, Pork are out cross-contamination
is also an issue 2 epi-pens needed at all times antihistamines are used but avoid ones with gelatin animal sources they must be Vegan
safe…There are some great Groups on Facebook to help…ALPHA GAL is in countless products even cleansing products at home including
toothpaste shampoo soaps detergent dish soap floss condoms hair gels skin creams aerosol perfumes colognes candle wax animal dander in some
vitamins medicines mineral supplements flavors ingredients additives milk ice cream yogurt cheese. ‘LONG LISTS’ even makeup & your partner
continued eating of these products, most change pots pans utensils etc even cast iron ones as well…Restaurant contaminations are high some
use beef flavor on chicken or roast potatoes etc or cook in same ovens with beef or pork even antibiotics Gelatin caps be made from Mammals…
I am fortunate to have been prescribed SCIG. Subcutaneous infusions are slower, usually result in fewer side-effects and I can self-administer at home. I was on antibiotics and prednisone for over a year due to persistent upper respiratory infections. My infections have stopped. I have experienced improvements in other health issues but perhaps it has slowed down the progression of ME/CFS. My infusions cost $10,000 per weekly infusion! I have Medicare and a secondary insurance with my former employer. I am SO grateful to NOT have upper respiratory infections but must admit, I was hoping for improvement in functionality and pain
It’s good not to have those infections for sure. The IVIG must be filling in some hole in your immune system. I guess there really big question is who receives benefits in functioning and pain from IVIG. Some people do. Figuring out who does and getting them IVIG would be really something.
You all forget that dr. Francis Coucke in Belgium already a long time ago discovered that immunoglobulines a key was to get better. However, the government of Belgium (he lives in) thries to let him pay for the prescriptions of giving immunoglobulines to patients, Th at in the last 5 years at least EUR 600.000. The patients he trated were all from bed to work again!!!!!
I myself cannot go to him for the distant is toot far and our government are also lying about that kind of costs and will not pay for it, so I am unfortunely still bedkeeping .
Our government is also lying foor many decades to keep low healthcosts
Hi. I’ve been diagnosed with POTS for nearly 10 years. Have been mostly housebound with short periods of better days. I’d love to contact Suzies mother and chat if that’s possible. I was diagnosed at age 20.
Thanks for the article it’s great!!
Can I make contact with Suzi or her family please?
I have IVIG in UK, with a neurology team who allowed it due to severity. I too had a dip in my condition after IVIG but then improved. I have M.E and POTS and possibly a varient MG.
But after five years of being good, a recent COVID jab threw me back into this world and now struggling with autonomic probs etc.