There are researchers like Dr Vincent and myself who have been scratching our heads but so far there does not seem to be any clear indication of how to tie things together. I scratched my head for twenty five years over RA and then saw how it made sense - and there were much better clues there, so it is not an easy issue. I suspect your own situation really is that rare. The other people with ANAs don't seem to have your antibodies, but they may each have a different sort of antibody. Remember that the body is capable of producing about 1,000,000,000,000 different types of antibody.
I bolded part of your quote to make it easier to see. I am not sure how to take it that my situation really is that rare. I don't mean it that I take it as a judgement or anything negative on your part, vs. that I just find it shocking that my situation could really be that different than everyone else here who is trying to get well. There must be others out there with positive ANA titers and my antibody (N-type VGCC Ab.) There are now 38 people in a FB group that I belong to who have this antibody so I know there are some (but our symptoms and diagnoses are so different.) I had no idea that the human body could produce 1,000,000,000 different types of antibodies!
It seems like everything I read though states that regardless of the antibody, the treatments (at this point in science) are IVIG, immuno-modulators or immuno-suppressants such as RTX, and/or plasmapheresis. I know you cannot give medical advice but do you agree that these are the core treatments (even if experimental) at this time for someone with a rare antibody?
Small cell lung cancers are often fast growing once they are of a visible size. But it is generally understood that most cancers grow slowly to begin with - often for several years. Most cancers involve about ten stepwise mistakes in the DNA. The first few mistakes may not change growth much. Only with the last few mistakes does the cell's growth control break down totally.
So even with SCLC, it could go undetected for five years before reaching a visible size? If this is the case, it seems like a lot of radiation for someone to get cat scans and Pet scans every six months to one year for something that may show up five years later or may never occur at all. I've learned that several in my FB group did have cancers but these individuals also had LEMS which I am negative for on EMG. It is so confusing!
What is certainly the case is that the paraneoplastic syndrome may appear at a time when the cancer is invisible and the cancer may go on being invisible for a considerable time. I don't think anybody who knows the scientific side thinks that the antibody comes first and then the cancer. But what is certainly true is that many people with antibodies of this sort never have a cancer.
I bolded part of what you said again b/c I am hoping that I am in the group of people who have the antibodies but never develop the cancer. I am fascinated/confused by a doctor who told me that trying to reduce the antibody now could reduce the future risk of cancer b/c this is so different than what you are saying (i.e. that the cancer always precedes the antibody.)
I don't think there is any reason to think that reducing the antibody level would affect the chance of developing cancer. That sounds to me like simple ignorance to be honest. Moreover, nobody has any evidence since rituximab has not been around long and to prove a reduction in risk would require a huge statistical study over many years. Somebody is talking off the top of their head. I rather suspect that some of the doctors are smart and some not so smart!!
To clarify the doctor I am speaking of (who I will never mention their name for confidentiality) was not speaking about RTX in any context and it is me who is speaking of RTX. However that doctor did say that reducing the antibody through other treatments "immuno-suppressants, IVIG, or PP" could reduce the future cancer risk. It's very perplexing but truthfully, my goal is to improve my symptoms and quality of life in the present regardless of what antibody level may occur on a blood test or what cancer risk I may have for the future.
But do remember that so far we are not sure that rituximab has any effect in ME/CFS. We just have a study that suggests it might do. Dr Fluge and Dr Mella would not want people to think it was proven fact yet that anyone gets benefit. Some patients have done well but that does not mean it was due to the rituximab.
I completely understand that we have no idea what effect RTX may have on ME/CFS and only hints that it might help a certain subgroup. I believe that I am in the subgroup (regardless of what my illness is ultimately called) that might be helped by RTX and if given the opportunity to try it after several months of IVIG, I will absolutely take the opportunity. I feel it is worth the risk for me, knowing that it could do nothing or even make me sicker or worst case scenario, kill me. Learning I had this antibody was a game-changer for me and am still trying to understand it (both from people world-wide who also have it and from doctors.)
