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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.
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.