Bedridden for 1,5 years and still getting worse - IVIG only hope

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Hi, im 27 and completely bedridden. Can’t even get to the bathroom. Been like this for over a year now and im still getting worse. Usually I don’t use my phone because it gives me a lot of nerve pain and muscle cramps, but I really need help right now so I put togheter this text, even though it took weeks to write.

Before I got this ill I did a ton of research and tried almost everything that has been recommended for ME and POTs. LDN, vitamins, mestinon, betablockers, antivirals, antibiotics, antidepressants etc… Nothing really helped, nor did it make me worse. It didn’t actually come as a surprise to me that all these attemps failed, because I’ve always been in belief that my symptoms are caused by autoimmunity. It has been a slow process where I from day one just got slightly worse day by day and never experienced any improvement, despite trying to rest for weeks and months. I found that it really didn’t matter if I rested or worked out (as long as I stopped in time), my disease got worse no matter what. I believe that the slow worsening of my symptoms is due to my immune system creating autoantibodies, causing problems with my nervous system. This is again resulting in cardiovascular problems and making me unable to move or stand up. Of course, I could be very wrong about this hypothesis, but it’s the most logical explanation in my opinion. The reason im writing this is because I want to try an immune modulating drug. And since im very ill, I concider IVIG to be the smartest option. I’ve also read that many patients with severe and very severe ME are responding well to this treatment. The only problem is that no doctors in my country are willing to let me try it. They don’t even want to test me for some of the diseases that makes me qualify for that kind of treatment.

So my question to you guys are: do you know about a clinic in Europe that can give me IVIG, based on my endless amount of neurological symptoms and some positive tests on autoantibodies? Price is not a problem. I really appreciate all of you for reading this and im thankfull for all the help I can get.
 

Judee

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I don't know that much about IVIG and hope someone will answer your question.

Before you do IVIG though, can you look into the Coimbra Protocol? Dr Coimbra is a Brazilian neurologist who is having success with patients who have autoimmune like MS, MG, RA.

https://www.coimbraprotocol.com/

This is a listing of Coimbra doctors around the world:
https://www.google.com/maps/d/viewer?mid=1fATZJUEhOsYYJdBY41h48FBkLaQ&ll=19.19212039288219,-24.660983600000023&z=2

There is a doctor in Norway. You could see if he would work with you. His website is not up but I think he has a Wikipedia page and a youtube video (though it's on a different topic but maybe would give you an idea of what he's like. ???

There is also a doctor listed for Netherlands on that list from google. That doctor's website is:https://ganzheitlichemedizin.de/

There is a FB MS group too but I'm afraid I've already given you too much info. I hope and pray this post won't cause sensory overload for you.
 
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Howard

suffering ceases when craving is removed
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I've been exclusively bed-bound since 2015 and can relate to your painfully slow worsening .. my P.E.M. began in 2009.

Piggybacking on @Judee -

My recent sudden (although gradual) improvement began after spending eight hours a day outdoors (almost every day since November) in an attempt to increase my vitamin D (low normal range).

As I understand it, sunlight exposure (increasing vitamin D levels) helps reduce inflammation, while also playing a role in decreasing autoimmune sensitivity.

Besides tart cherry powder (for restful sleep), nothing else has been positively impactful besides practicing mindfulness / meditation.

I'd also like to try IVIG…


*I live in the desert southwest, USA -
 
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@Scandinavian guy, I agree with yout that IVIG is likely to be the best treatment option in case you have strong evidence of autoinmunity (e.g. positive autoantibodies). Unfortunately, it is usually difficult to access to this treatment. Other alternatives you may consider to treat autoinmunity include steroids, plasmapheresis or immunosupressant drugs. Nevertheless, it is important to recall that all these treatments may have potentially serious side effects.
 
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Thanks for the responses, it means a lot to me. I wish I could answer all of you but I can barely move. To make it short I can say that I have tried both high dose vitamin D and love dosages of steroids without any luck. The steroids made me a little worse so I couldn’t risk a higher dose. Would have taken the chance with plasmapheresis but the doctors won’t let me try anything that isn’t a pill. If some of you stumble across a clinic or doctor who can help me with IVIG or plasmapheresis in the near future, I would really appreciate it if you notified me. I don’t want to live in this bed any longer.
 

elvira

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Hello from Sweden!

Have you been tested for G-protein coupled autoantibodies that have been found in ME patients? They test it in Germany at celltrend.de .

I’m sure you’ve heard of the drug BC007 that neutralize these antibodies. They will start a drug study this summer for Long Covid and ME. It will take place in several countries, amongst them Germany and Finland. They will soon drop the lists of places where one can sign up for the study (at their website berlincures.de). Maybe best to wait for the drug, but just an idea to try and get in early in a study (but there’s always the risk of getting the placebo...).

Sending hugs!
 
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I agree that BC007 is a promising treatment. I understand that it may be more effective and less toxic than IVIG or Rituximab. Nevertheless, what is the advantage of BC007 in comparison with plasmapheresis or immunoadsorption? As far as I am aware, plasmapheresis and immunoadsorption can also be used to remove these autoantibodies.
 

Gingergrrl

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I’m sure you’ve heard of the drug BC007 that neutralize these antibodies.
I agree that BC007 is a promising treatment.
@elvira and @Castorp I had heard about BC007 in other threads but never Googled it before right now. It is very interesting and I was curious, do you know if BC007 has only been shown to be promising against "beta-1 adrenergic autoantibodies" or against all types of "G-protein coupled auto-antibodies", or against an even broader assortment & types of autoantibodies in general?

@Scandinavian guy I wish I knew how to access IVIG in Europe and am hoping someone else will see this thread to give you some feedback or ideas. In the US, if you have insurance, then there are specific diagnostic codes that can be used by your doctor with a diagnosis that qualifies for IVIG.

Maybe you could put the word "Europe" or a specific country in the title of your thread to make it clearer what you are looking for?
 

elvira

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@elvira and @Castorp I had heard about BC007 in other threads but never Googled it before right now. It is very interesting and I was curious, do you know if BC007 has only been shown to be promising against "beta-1 adrenergic autoantibodies" or against all types of "G-protein coupled auto-antibodies", or against an even broader assortment & types of autoantibodies in general?

@Scandinavian guy I wish I knew how to access IVIG in Europe and am hoping someone else will see this thread to give you some feedback or ideas. In the US, if you have insurance, then there are specific diagnostic codes that can be used by your doctor with a diagnosis that qualifies for IVIG.

Maybe you could put the word "Europe" or a specific country in the title of your thread to make it clearer what you are looking for?
From what i understand it is effective against several types of G-protein coupled autoantibodies. I know the lab at Berlincures tested people’s blood for at least 7 of these antibodies ☺️ It is exciting stuff!
 
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I certainly don’t want anyone in this thread losing hope, but I did want to share that I have very severe M.E., bedridden for 4.5 years, and have the autoantibodies. I was on subcue IGG and IVIG for 5 years. I declined during that time. Unfortunately, IVIG did not help. It is also quite hard to get approved by insurance, as the cost is very high.