Discussion in 'General ME/CFS Discussion' started by l2009, Jan 16, 2018.
anyone know what it is?
I’m bored and just interested in doing some research?
Anyone know any?
For example i was reading about what they do in germany is put give you hyperthermia treatment which involves bringing your body up to 42 degrees over a number of hours and killing the bacteria. this is done twice over the 2 weeks. then she gets iv treatment the other days to bring back up the innune system. from what i believe and heard it is a very sucessfull treatment but unfortunately is not available over here.
I think that if for Lyme disease rather than cfs but stuff like that interests ,e
IVIG is pretty expensive.
The hyperthermia treatment is VERY interesting. Especially for lyme. I wonder if there's any application of it for CFS or viruses/mold.
Best and expensive are not necessarily tied with each other. People here have sometimes found relief and even cure from very cheap drugs like LDN or B12. There might well be a simple way to fix the dysregulated system in CFS/ME and there might be a cheap drug somewhere in the world that would achieve this, maybe we just don't know of its existence yet. Certain antivirals and biological drugs like Rituximab are often much more expensive and hence also less accessible to the general population, so I would rather wish that if one day the best treatment for CFS/ME is found, that it would be cheap.
Probably the custom treatment Dr Klimas did where she removed T-cells, treated them with IL2, and reinfused them creating a temporary remission. I don't have a source for this other than what Dr Chia told me. Likely cost a few $100,000.
Other treatments (from memory):
High dose IVIG = ~$120k / year
Photopheresis = ~$92k / year
Plasmapheresis = ~$120k / year
Stem cells = ~$20k / year
Rituximab = ~$150k / year
mHBOT chamber = ~$10k / year
Harvoni = ~$60k / year
Ampligen = ~$50k / year
Interferon-alpha / gamma = -$30k / year
This doesn't really workforce's the majority of patients, alas.
I'm becoming more interested in Dr Klimas again. She said that in her mouse models she was able to reboot the immune system. She says she is doing human studies now. She says Gulf war and ME present the same, although the messaging in the body in Gulf war is unregulated, and in ME down regulated.
She has lots of Gulf war cash for her trial. It may apply to ME.
Does anyone have more info about this???
I've read several interviews with her and looked at the 2017 studies she did, she is a very productive physician. If anyone knows more, please post.
Harvoni is available on generic at $500 a month from India, just in case anyone is interested. Not really heard anything about it for ME, but its been a miracle drug for hepatitis.
Rituximab would vary from country to country but there are also Indian biosimilars (generics) available.
Best treatment is impossible to say, but the ones with some kind of current track record seem to be Ampligen, Valcyte and increasingly IVIG. They are certainly not the best treatments as there are sure to be other off label drugs which work better, perhaps Suramin, Cyclophosphamide or Tocilizumab. Its almost certain that it will continue to vary greatly from person to person even with new treatments.
A whole genome scan used to cost 2.7 billion
Here is her bio at the Institute of Neuroimmune Medicine at Nova Southeastern University. At the bottom of the page there's button to link to her publications, and another to link to her current research. There's a lot.
She's a great clinician, too.
You can also try a Google Site Search
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