Got treatment in the EU and doing well starting remission

[Gingergrrl]

In life we must take calculated risks to elicit gains and as long as the potential latter outweighs the former I believe it's worth it but of course not without advice and guidance from a trained medical professional first ,albeit one that cares enough to listen and trusts you.

I totally agree w/this statement and it describes where I am at right now in trying to get Rituximab (RTX) approved later this year. I passed the point of sitting around and doing nothing when I found out that I had all of these abnormal auto-antibodies. Actually, I never was sitting around doing nothing from the moment I got ill. But at that time I had no idea what was wrong w/me and went in several wrong directions vs. at present, I believe I am going in the correct direction. You can never stop searching and your story inspires me (even though I do not have anti-NMDA Abs).

and since we don't know what exactly ME or CFS is "yet" and so many people here seem to have different presentations or combos of many of the same symptoms due to different triggers I think it's fair to say that most of us have some sort of immunologically driven dysfunction with varying phenotypes.

I agree with this as well and feel that there are several different sub-groups, if not diseases, represented on this board. I was diagnosed with "CFS" by my former PCP in 2013 who told me that there was "no treatment" and she had nothing to offer me. Then I saw a specialist who diagnosed me with ME/CFS and said the two main things that were closest to bio-markers were low NK Cell Functioning and undetectable vasopressin (both of which I had big-time). I had viral reactivation of herpes and enteroviruses and I had the co-morbidities of most of his patients (POTS and MCAS). The piece I did not share with many of his patients is that I am negative for Lyme and all co-infections.

We did not know at that time, however, that I was positive for so many B-Cell mediated auto-antibodies. Once this was discovered it completely changed the course and focus of my treatment. I suspect many have not been tested for auto-antibodies so we do not yet know what role they may play. I also had significant toxic mold exposure. It is impossible to pull apart each trigger and say what caused what IMO.

I wish I could say with 100% certainty that ME/CFS is my diagnosis but at this point, we can't. It would be a relief to have a diagnosis instead of continuing to search for a name for my illness. But in my group for people with my CA+ Channel autoantibody, we are all over the map in the diagnoses that we have been given. No one knows, but if you find a treatment that works... grab it and don't look back IMO.

What works for me may not work for some that's why some People with ME responded to Rituximab and some did not ,different phenotype ? Or different disease? Point is @Jonathan Edwards WE DONT KNOW yet ,but my struggle gives people hope and I am happy to share that ,.if only.

I have read the RTX article (Fluge & Mella, Schiebenbogen, Heidecke) and I am almost a perfect match with the responder group re: autoantibodies. I do not match their symptoms (we are radically different symptom-wise) but on Auto-Abs, we could be twins. We test positive on the same Cell Trend Abs (except I actually test positive on more of them), we have positive ANA titers, and positive anti-thyroid Abs. The similarities were shocking to me.

The whole ordeal with ME/CFS is that all our test results come back negative, while yours have not.

This is one of the reasons why I think I do not have ME/CFS b/c almost everything that I test for comes back abnormal! My latest blood tests for B-12, Folate, homocysteine, selenium, etc... every single result was abnormal and these are just the common tests. My viral titers are always abnormal, my auto-antibodies are abnormal, inflammation markers abnormal, NK Cells & vasopressin abnormal, etc. It's hard for me to think of a test that is not abnormal. Even the non-blood tests- my TTT and QSART were abnormal, EMG abnormal, all pulmonary function tests abnormal. But what it all means, I have no idea!

 

[Kenny Banya]

I would of course never claim that you don't have ME/CFS, but since we don't have biomarkers (yet) I don't see what they would base your ME/CFS diagnosis on right now.

What about the blood biomarkers found by the Australian study last year?

 

[Tally]

What about the blood biomarkers found by the Australian study last year?

There's not a single lab in the whole world where ME/CFS patient can go and get tested to see if they have ME/CFS or not. That is what biomarker means.

There is plenty of promising research into potential biomarkers, which is why I wrote "yet".

 

[Sushi]

While it's certainly possible to have two different illnesses at once, right now as things stand ME/CFS is a diagnosis of exclusion.

I think that depends on where you are. Diagnostic criteria like the Canadian, the International and the SEID are looking at what you do have symptom-wise--and don't exclude symptoms of other diseases because no one knows yet exactly what ME/CFS is.

But let's not get that mixed up with ME/CFS being connected with those antibodies.

Thing is, we don't know yet.

 

[Tally]

I think that depends on where you are. Diagnostic criteria like the Canadian, the International and the SEID are looking at what you do have symptom-wise--and don't exclude symptoms of other diseases because no one knows yet exactly what ME/CFS is.
Thing is, we don't know yet.

This is not experience of most ME/CFS patients. Doctors usually demand all other diseases are either excluded or under control before they will give the ME/CFS diagnosis.

Thing is, we don't know yet.

What do you mean? If one has Anti-NMDA antibodies then one is diagnosed with Anti-NMDA receptor encephalitis, a rare autoimmune disease that has a biomarker and treatment.

 

[Sushi]

Again, I think it depends on where you are as they don't know yet if some auto-antibodies are associated with ME/CFS.

 

[Gingergrrl]

Again, I think it depends on where you are as they don't know yet if some auto-antibodies are associated with ME/CFS.

I agree w/you and I don't think anyone knows yet with 100% confidence what ME/CFS is. I still torture myself daily as to whether or not it is my diagnosis. Does having several weird auto-antibodies exclude me or will it turn out that ME/CFS is a calcium channelopathy (which is a big part of what I have). No one knows yet IMO. I certainly don't know.

Some would say since I have Hashimoto's, POTS, a Mast Cell Disease, and all of these weird auto-antibodies that this excludes me (and they might be right) and others say, no, these are just co-morbid diagnoses and my two positive enterovirus titers alone prove that I have ME/CFS (and they also might be right) while others say ME/CFS is purely due to mold/mycotoxins (and they might be right).

I have no clue so I am trying to listen and learn from everyone but it leads to so much confusion! My goal is symptom relief and improving my quality of life b/c I don't think I will ever be able to put a label on my disease (and I would even less attempt to put a label on someone else's disease).

 

[SK2018]

There is one thing I am sure of 100% without a doubt for anyone here that suffers from ME symptoms/neuro
Immune disease,the above treatments i mentioned regardless of potential risks are far more beneficial and worth trying than the insulting treatment of GET and CBT which apart from being degrading to sufferers as it basically says we are somatics and are sick because of belief problems but it is in fact proven to be harmful.

This was the treatment that was originally offered to me,and after watching a documentary on the late Lynn Gilderdale who died from ME and yet failed EVEN at that time to get respect and recognition for her mystery illness from medical professionals I decided this was NOT going to be my fate.

If near bankrupting myself in search of a cause to try and get treatment for a desperate illness in order to bring hope to other sufferers here with similar symptoms is my crime then I stand PROUDLY..GUILTY AS CHARGED!.

Rituximab or CBT folks,you decide which is more worth a try.....

 

[Jill]

@Shawn
Thank you immensely for coming back and filling us in on your journey . It would seem important that anti nmda autoantibodies should be tested for in anyone suspected of having ME . You've proven this . It isn't available and we should push for it . Cripes the lengths you've gone to, I'm so pleased you are doing well . I feel I have to do something like this for my partner and myself . I am leaning heavily on Drs here

 

[Gingergrrl]

@Shawn Thank you for posting updates like @Jill said and also for your PM. I am very impressed with the lengths you are going to get the proper diagnostics and treatments and you have really inspired me to keep fighting to continue my IVIG and get Rituximab here in the US regardless what label is put on my illness.

I was able to pick up my dog (while seated) for the first time in almost three years and no other possible explanation except for the IVIG. Medical bankruptcy is actually worth it to me at this point. So far my IVIG has all been covered but am in true limbo whether this will continue.

If the insurance company could live a week in my shoes (wheelchair) they'd be singing a different tune. They make you beg for mercy for these treatments but I am not too proud to beg.

 

[Kenny Banya]

I am using my EHIC insurance
Card so I won't know costs until the bill comes in, i will
Be covered for 70-80% so shouldn't be too much.

If you could let me know what it ends up costing, so I can multiply it by 5 to calculate out of pocket costs

 

[knackers323]

@Gingergrrl where were you able to get the antibody testing done? did you need a certain specilist or something? thanks

 

[Gingergrrl]

@Gingergrrl where were you able to get the antibody testing done? did you need a certain specilist or something? thanks

It's been a combination of various places. In 2013 my Endo discovered that I had the two Hashimoto's (thyroid) autoantibodies but I truly never thought much about it beyond starting thyroid med. It was not until early 2016 that I was having tests at a dysautonomia clinic that they decided to send blood to Mayo for autoantibody panels. I honestly did not even know what they were testing for and they told me that everything was going to come back negative.

So we were shocked when I tested positive for anti GAD65 and N-type Calcium Channel autoantibody. We did re-tests through OMI & Quest and all were positive. The Panels I had that were sent to Mayo were called PAVAL, Myasthenia Gravis & MuSK panels, and the GAD65.

Then later I did the Cell Trend Panel on my own (w/my doctor from OMI) and was positive for 7 of the 9 autoantibodies. We ran it a second time a few months later just to be certain and I remain positive for 7 of the 9 (just in case there had been a mistake). So I have the beta-adrenergic and anti-muscarinic auto-abs which correlate to autoimmune POTS and muscle weakness. But the science is not there yet to say much more and sadly the Cell Trend tests are not even done in the U.S. Why we are so behind on this issue is baffling to me.

Lastly, I saw a rheumy in 2016 who did some testing and found the positive ANA titer 1:160, speckled pattern. He was not concerned and was not able to help me (although he was a nice person).

 

[kms1990]

Wow Shawn your story rings true for me. I am just now starting to go through the trail and error of treating autoimmune encephalitis and associated illness. (I have something different than you with very high D2 antibodies) I was diagnosed with this in the last 2 weeks after 9+ years of a CFS diagnosis!!! Its only my last amazing doctor who started to dig into this stuff, before that I was just labeled CFS/POTS and not really helped at all. And I saw the Big wig CFS docs too (Natelson, Klimas, Rey, Stewart). I think its important for people to know that AE can also be subtle and less dramatic sometimes. In my case it just got worse and worse over time with occasional very bad fairs which sent me to the hospital. During those years I worked a very high stress job on a trading floor with sometimes 14+ hr days. I have no idea how I did it but did become fully disabled this past year.

This illness is so new doctors haven't heard of it. Its a new frontier. I hope I will be able to get better and spread the word.

 

[IreneF]

@Shawn Is Bortezomib only available in the EU or also in the US? I will Google it but was curious if you happened to know from all your research?

Am thrilled you are feeling better and your story has inspired me not to ever give up searching for answers (even though you probably don't know that)!

ETA: Just Googled it and it looks like it is approved in the US for multiple myeloma.

That's interesting. My dad died of MM and I am starting to overproduce gammaglobulins.

 

[Gingergrrl]

I am just now starting to go through the trail and error of treating autoimmune encephalitis and associated illness. (I have something different than you with very high D2 antibodies) I was diagnosed with this in the last 2 weeks after 9+ years of a CFS diagnosis!!! Its only my last amazing doctor who started to dig into this stuff, before that I was just labeled CFS/POTS and not really helped at all. And I saw the Big wig CFS docs too (Natelson, Klimas, Rey, Stewart).

@kms1990 Wow, I had no idea that you were just diagnosed with AE and was a bit worried when I did not hear back from you since the beginning of March. We have the same doctor (will not say his name here) but if he is the one who figured this out for you, I am even more impressed w/him than I already was which I did not think was possible. Will you be doing IVIG and Rituximab if you can get insurance approval (or going another route)?

This illness is so new doctors haven't heard of it. Its a new frontier. I hope I will be able to get better and spread the word.

Agreed that autoantibodies is a new frontier (beyond the standard ones like Lupus, RA, etc, that everyone knows about) and I am certain that many on this board would test positive for different auto-abs if they had the opportunity to be tested through Mayo or Cell Trend and not just the basic test that a rheumy will run. Yes, you and I (and Shawn) will continue to spread the word.

 

[Gingergrrl]

That's interesting. My dad died of MM and I am starting to overproduce gammaglobulins.

My step-daughter's biological mother died of MM when she was two yrs old so I am familiar w/the illness b/c of this connection but had not heard of the drug that Shawn mentioned prior to this thread. I think a lot of these drugs will eventually be re-purposed for autoimmune conditions in addition to cancer but it will take a long time. And I am very sorry to hear about your dad and know what a horrible illness MM can be.

 

[IreneF]

My step-daughter's biological mother died of MM when she was two yrs old so I am familiar w/the illness b/c of this connection but had not heard of the drug that Shawn mentioned prior to this thread. I think a lot of these drugs will eventually be re-purposed for autoimmune conditions in addition to cancer but it will take a long time. And I am very sorry to hear about your dad and know what a horrible illness MM can be.

Thank you. He died fairly quickly, only a matter of weeks. He was utterly healthy, in his early 80s, then kaboom, everything failed at once.

I did some reading after I got the test results. Apparently there are several new drugs for MM so life expectancy is increasing a little bit.

My internist says not to worry about the high gamma globulin light chains, but I think it'ssomething I'm going to have to keep tabs on since MM can be inherited.

 

[Gingergrrl]

@IreneF Was the test with elevated results that you took for IgM or something else? My IgM is always elevated but I've always been told not to worry about it.

 

[SK2018]

If you could let me know what it ends up costing, so I can multiply it by 5 to calculate out of pocket costs

EHIC covers up to 60-70% in most cases so until I get the bill I won't know the exact amount for sure,can update later at the time.