Thank you @Belbyr! Do you remember if this was in a journal article or a video (or something else)? I am going to try to find it in the future and am really curious who she felt that subgroup was that it could work for. I didn't realize that she uses Rituximab (unless I knew and forgot)? I am wondering if she uses Cell Trend or other autoantibody testing to determine subgroups? I am so curious now!!!
Is your free testosterone level also below normal as well?
As of 2014, for the HPA axis, the hypothalamic-pituitary-gonadal (HPG) axis and the immune system, respectively, Klimas had found :
(I believe in the above instance that the female CFS patients may have been a mixture of pre- and postmenopausal women, since they're just described as having an average age of 50, but I'm not sure.)
I haven't been able to determine what Klimas has found the HPA, HPG and immune system profile to be for ME/CFS males, except that they appear to have at least some immune shift towards the proinflammatory TH1 state, but it is different than in GWI males.
Ritux really did appear to work well on some individuals. The trick is figuring out whom. Because it's a pretty drastic therapy. You don't want an already-weakened individual to go through that, potentially making themselves worse.
Do you know if anyone is still studying or researching this? I wish I knew what made me such a robust responder (besides that I have B-cell driven autoantibodies). I assume there are many people with autoantibodies who are not responders so there must be something more.
That is interesting and for a long time I had extremely low testosterone levels as well (and women are supposed to have some testosterone like you said).
My main doctor was so concerned that he had me do an extra panel w/several additional testosterone tests (although I don't remember what it was called). He did not feel in any way that it was the cause of my illness vs. just another abnormal test that could possibly be contributing to the level of muscle weakness that I was having at that time and could be improved or corrected. It is normal now (and I never supplemented with anything to make it so which is odd).
Here would be the reasons why Dr Klimas did not answer you:
1) She is not your doctor. She is not responsible for you. She doesn’t know your case. She hasn ‘t prescribed this medication to you. It would be medical malpractice if she encouragend patients to take dangerous medication on their own. She would risk her entire career and future clinical trials by encouraging folks to take drugs without medical surveilance and without due dilligence.
2) the black box warning on etarnacept:
On May 2, 2008, the FDA placed a black box warning on etanercept due to a number of serious infections associated with the drug. Serious infections and sepsis, including fatalities, have been reported with the use of etanercept including reactivation of latent tuberculosis and hepatitis B infections.
There has also been a report of strongyloides hyperinfection after use of etanercept
This is not to be taken lightly.
Patients taking meds on their own and risking everything should not in my view imperil the chances a doctor has in trialling these drugs the right way, through FDA approved clinical trials that will assess for safety and efficacy of the protocols. These patients receive regular care and careful follow-up to assess side-effects and toxicity of both drugs and combined complications.
The last thing that Dr Klimas wants at this point is just this, patients doing their own trials.