If there were no barriers, financial or otherwise, what treatments would you try

[Gingergrrl]

I take a lot of interest in US politics & society.
No offence, but the way you treat your sick, vulnerable & poor is disgusting.

ITA with you and no offense taken whatsoever!

Luckily, Michael Moore's Sicko made your society a bit more aware, & Obamacare was a step in the right direction.

Agreed and hoping that the Obamacare system remains intact.

@Gingergrrl - thank you for this info! I knew there was some testing re antibodies but my brain seems to shut down when I read about antibodies.

It's actually autoantibodies (or autoimmune antibodies) which are made by the B-Cells and attack different functions in the body. You can temporarily lessen the attack w/high dose IVIG but only permanent way that I know of is something like RTX.

Is your doctor an immunologist or rheumatologist, or something else?

I have two docs and one is an internist/ME/CFS specialist and the other is an allergist/immunologist and MCAS specialist.

Interesting your doctor says it would be a walk in the park compared to the IVIG!

I am hoping this to be true!

My experience with RTX was that it was easier too take than IVIG .

That is so interesting and I would love to hear more about your experience with RTX. I have a thread on the topic: http://forums.phoenixrising.me/inde...nyone-who-has-tried-rituximab-mabthera.49831/ in case you are able to post there. I would love to hear about your experience.

The thing that gets me is if RTX was so great treating CFS/ME why is the drug Maker not putting it through the process to get FDA approval the same way Lyrica was put through for FM.

I don't know anything about Lyrica or FM and we are close to 100% that ME/CFS is not my diagnosis so I am probably the wrong person to reply. Am very interested in the clinical aspects vs. the politics/money aspect.

There is more to this RTX story than we are being told.

What do you mean? (Sorry if it is something obvious)!

 

[Chelby]

As a last resort, I would try an Ketamine coma for 7-10 days which you can travel to Germany to do. Ketamine is a strong inhibitor of mTOR which I suspect is involved in my illness. It so crazy it just might work.

 

[Jesse2233]

12 rounds of IVIG and Plasmapheris spaced every two weeks over the course of a year

supported by a tailored methylation protocol, LDN, and Equilibrant with Ketamine every two months

resting periods with deep relaxation and float tank therapy in-between

if that didn't work... Rituximab and stem cell therapy

 

[Gingergrrl]

12 rounds of IVIG and Plasmapheris spaced every two weeks over the course of a year supported by a tailored methylation protocol, LDN, and Equilibrant with Ketamine every two months, resting periods with deep relaxation and float tank therapy in-between, if that didn't work... Rituximab and stem cell therapy

Interesting and since we live in the same basic area, have you found any doctor anywhere who is willing to do plasmapheresis? I tried but gave up and none of my docs had ever done it. They said it's common in Europe and Asia but not really done in the U.S. It's a very quick way to get rid of auto-antibodies but then they also return pretty quickly.

What would a "tailored" methylation protocol entail? I tried LDN and didn't tolerate it and can't do Equilibriant b/c of all my autoimmune problems. Ketamine scares me but you are very brave so not shocked you would try it!

What is float thank therapy?

Rituximab is my next step if approved by insurance (looking more doubtful right now) and am not sure what I think about stem cell therapy. It seems to be done overseas and results very short-lived.

Thanks for your very interesting answer! Can't tell from it if you are thinking you are more viral mediated or autoimmune at this point?!

 

[Jesse2233]

Interesting and since we live in the same basic area, have you found any doctor anywhere who is willing to do plasmapheresis?

Working on that!

What would a "tailored" methylation protocol entail?

I just mean tailored to my genetics and lab results (as per Fredd, Yasko, and Rich)

What is float thank therapy?

Floating for 90 minutes in a sensory deprivation tank (no light / sound, 2 feet of epsom salt water). Very relaxing, used to do this when I was well

Can't tell from it if you are thinking you are more viral mediated or autoimmune at this point?!

Working on figuring that out as well