My experiement with Nancy Klimas' protocol- Etanercept and Mifepristone

Gingergrrl

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I'm not for sure, I just remember seeing her mention the Rituximab trials and she felt like there is a subgroup that it would work perfectly for. She mentioned she uses it.
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!!!
 

Belbyr

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One of my questions for her was the cell trend test.

I'm pretty sure it was a youtube video of a blonde headed middle aged woman interviewing her.
 

Belbyr

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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.
Free testosterone is only a few points away from being abnormally low.
 

JaimeS

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I'm not for sure, I just remember seeing her mention the Rituximab trials and she felt like there is a subgroup that it would work perfectly for.
She's not the only one who says that/thinks so.

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.
 

Gingergrrl

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One of my questions for her was the cell trend test.
What did she say (or have you not asked her yet)?

I'm pretty sure it was a youtube video of a blonde headed middle aged woman interviewing her.
Thank you and I am going to look for this (and I spend WAY to much time watching nonsense on YouTube that I may as well watch something productive LOL).

She's not the only one who says that/thinks so. Ritux really did appear to work well on some individuals.
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.

The trick is figuring out whom.
Exactly and I still think this is crucial and hoping someone is still researching it (outside of cancer research).

I recall that was one of my most out-of-range values. Even women are supposed to have some free testosterone. Mine was not there.
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).
 

Kati

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i also wrote a mail to Dr. Nancy Klimas about my trying her protocol. She did not reply to my mail. So thats it. If there is any improvements in the weeks to come I will post it
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.[13] Serious infections and sepsis, including fatalities, have been reported with the use of etanercept including reactivation of latent tuberculosis and hepatitis B infections.[14][15]

There has also been a report of strongyloides hyperinfection after use of etanercept

This is not to be taken lightly. DC915FAD-BF15-49E1-92CA-8C849A2B313A.png

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.
 

JaimeS

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Dr Klimas is very, very busy. She verbally asked me to contact her and then didn't reply! Her inbox is probably clogged with tens of thousands of messages. Dr Davis is the same.

It took months to get ahold of her and have a meeting. It's just the way it is.

Though I really do take your point about people in ME research being very cautious about what they are seen to have recommended.