Why do the Fluge/Mella trials seem to be more successful than off/trial reports?

[Gingergrrl]

In case (1), rituximab would work by clearing the autoimmunity that had been triggered as a one-off event by the acute infection. In case (2), perhaps rituximab will clear the autoimmunity for a while, but possibly the autoimmunity might later reappear because of the ongoing infection

This makes a lot of sense to me and I suspect that I fit in category #1. I tested IgM positive for EBV and other viruses for about 2-3 years but no longer do and now I test positive for all kinds of auto-antibodies instead.

But I am just guessing here. I know very little about autoimmunity, so take the above with a pinch of salt.

You are very knowledgeable about this topic IMO and I think very little is known about autoimmunity in general (from many of the doctors that I attempted to see last year). I was the first patient they had encountered with the anti Calcium Channel antibody in their whole career and most had zero interest in learning more about it in spite of it's connection to LEMS and small cell lung cancer.

@Gingergrrl Thanks for your knowledge! I am waiting on cell trend results, if those are high which other autoantibody tests do you recommend?

There are so many but I was initially tested on the PAVAL panel with blood sent to Mayo Clinic (I did not go to Mayo, just the blood sent there for testing). At that point, I was told that all of the results were expected to come back negative so was a bit shocked when I had the anti Calcium Channel Ab and GAD65 and it made me look further into additional autoantibody testing since I already had the two Hashimoto's Abs.

What's FXR?

I was curious too what FXR means?

 

[Hip]

So then a combination of anti-virals, T2 immunomodulators, and B-cell depletion might have a synergistic effect?

In Dr Chia's research with the enterovirus antiviral ribavirin, and the antiviral/immunomodulator IV interferon, he got good results, with major improvements or full remissions. However, as soon as the treatment was stopped, ME/CFS soon returned, along with the return of the virus in the blood (although in the case of interferon, some patients remained in full remission for around 1 year).

So these antivirals don't clear the virus, and there are reasons why you cannot use them on a long term basis.

(Oxymatrine is different: if this immunomodulator works for you, then you can take it long term).

Thus unless better enterovirus antivirals are developed, the antiviral approach for enterovirus associated ME/CFS is not a particularly viable one at present.

 

[eljefe19]

Will do, assuming you mean this thread? http://forums.phoenixrising.me/inde...on-the-latest-science-here.49188/#post-810919

Would RTX still be a factor in those without gut issues?

Yes thats the one! @nandixon and @Bdeep86 are the ones to run the science questions through.

 

[Gingergrrl]

(Oxymatrine is different: if this immunomodulator works for you, then you can take it long term).

I actually ended up seeing Dr. Chia (approx one year ago and just for one appt and he is not my doctor) and he told me I was not a candidate for Oxymatrine b/c I had Hashimoto's (and I did not even know about the other autoantibodies yet)!

Thus unless better enterovirus antivirals are developed, the antiviral approach for enterovirus associated ME/CFS is not a particularly viable one at present.

He told me this as well. He was very against Valcyte (which did not work for me anyway) and he said there were no anti-virals at present for enteroviruses. He told me I was not a candidate for IVIG yet it ended up being the best treatment I have tried in four years of being sick.

 

[eljefe19]

I was curious too what FXR means?

Thank you for the info again Ginger!
Relevant post on FXR here and my new thread here.

 

[Gingergrrl]

Thank you for the info again Ginger!
Relevant post on FXR here and my new thread here.

Thanks and will check out the threads but doubtful I will understand them if too sciency!

 

[eljefe19]

I was able to and I'm brain fogged like Pacifica

 

[Jesse2233]

So these antivirals don't clear the virus, and there are reasons why you cannot use them on a long term basis.

Because of their toxicity? Don't some stay on Valcyte and Valtrex long term? Is ribavirinore more poorly tolerated?

And what about long term use of anti-viral supplements such as neem, DHQ, and monolaurin?

 

[Jesse2233]

He told me I was not a candidate for IVIG yet it ended up being the best treatment I have tried in four years of being sick.

Interesting, did Chia say why he thought you weren't a candidate?

 

[Hip]

Because of their toxicity? Don't some stay on Valcyte and Valtrex long term? Is ribavirinore more poorly tolerated?

Yes, I think it is because of the toxicity of ribavirin.

In the case of interferon, the problems are: (a) the expense, (c) the depression side effects, and (c) the fact that long term use tends to trigger the production of anti-interferon antibodies, which stop interferon working.

Problems (a) and (c) might be countered by taking interferon suppositories: you can buy Russian interferon suppositories very cheaply, and I suspect that anti-interferon antibodies may be less likely to develop with interferon suppositories, compared to injected interferon.

Unfortunately, even when trying very low dose interferon suppositories (15,000 IU daily), it significantly worsened my depression, so unfortunately I had to stop.

 

[eljefe19]

Yes, I think it is because of the toxicity of ribavirin.

In the case of interferon, the problems are: (a) the expense, (c) the depression side effects, and (c) the fact that long term use tends to trigger the production of anti-interferon antibodies, which stop interferon working.

Problems (a) and (c) might be countered by taking interferon suppositories: you can buy Russian interferon suppositories very cheaply, and I suspect that anti-interferon antibodies may be less likely to develop with interferon suppositories, compared to injected interferon.

Unfortunately, even when trying very low dose interferon suppositories (15,000 IU daily), it significantly worsened my depression, so unfortunately I had to stop.

Hip could I buy the interferon from you? I'm interested in trialing it.

 

[Jesse2233]

you can buy Russian interferon suppositories very cheaply, and I suspect that anti-interferon antibodies may be less likely to develop with interferon suppositories, compared to injected interferon.

Given Chia's experience, I take it this wouldn't be effective against CB4?

Unfortunately, even when trying very low dose interferon suppositories (15,000 IU daily), it significantly worsened my depression, so unfortunately I had to stop.

How long did you take them for?

 

[Hip]

Hip could I buy the interferon from you? I'm interested in trialing it.

I'd like to keep the small quantity I have, because I'd want to try it again, if I can find a treatment for my depression symptoms (currently trialling human growth hormone for its antidepressant effects; fingers crossed). But you can easily buy interferon suppositories without prescription from these online pharmacies (websites are in English). The Laferobion starts at just $7.50 for 5 suppositories.

Given Chia's experience, I take it this wouldn't be effective against CB4?

That's what Dr Chia found, and it's probably the case, but I was not able to find any studies or info online about the effect (or lack thereof) regarding interferon alpha treatment of CVB4.

CVB4 is the active Coxsackie virus I have, but because of brain fog, I completely forgot that Chia found interferon does not seem to work for CVB4, so I went ahead anyway with my interferon trial. However, you never know, perhaps some other effect of interferon might be useful.

How long did you take them for?

Just for around 3 days, before the depression hit hard.

 

[eljefe19]

I'd like to keep the small quantity I have, because I'd want to try it again, if I can find a treatment for my depression symptoms (currently trialling human growth hormone for its antidepressant effects; fingers crossed). But you can easily buy interferon suppositories without prescription from these online pharmacies (websites are in English). The Laferobion starts at just $7.50 for 5 suppositories.





That's what Dr Chia found, and it's probably the case, but I was not able to find any studies or info online about the effect (or lack thereof) regarding interferon alpha treatment of CVB4.

CVB4 is the active Coxsackie virus I have, but because of brain fog, I completely forgot that Chia found interferon does not seem to work for CVB4, so I went ahead anyway with my interferon trial. However, you never know, perhaps some other effect of interferon might be useful.





Just for around 3 days, before the depression hit hard.

Aripriprazole, minocycline and 5-http might not be a bad regimen. I'd avoid ssris because they upregulate SIRT4

 

[Hip]

Aripriprazole, minocycline and 5-http might not be a bad regimen. I'd avoid ssris because they upregulate SIRT4

I've tried all those, but unfortunately without any success.

 

[eljefe19]

Damn! That's too bad. Let me investigate.

 

[Gingergrrl]

Thank you for the info again Ginger! Relevant post on FXR here and my new thread here.

Thanks @eljefe19 and I finally had a chance to read those two threads but can't say I really understood them! The first one implied that people improved w/alcohol but I developed alcohol intolerance in 2013 and it makes me much worse. But this may be b/c of the histamine content in alcohol and I have MCAS and also that I do better w/vasoconstrictors like Midodrine vs. vasodilators. So I don't think that theory pertains to me?

Interesting, did Chia say why he thought you weren't a candidate?

Jesse, sorry I missed this question earlier. He did not explain why he did not recommend IVIG for me and was solely focused on the enterovirus theory and said that I had an EV infection in my brain within five min of meeting me. I have not had a brain scan, lumbar puncture, or anything that backed up his statement.

It was not a helpful appt for me but am glad I went just in case it could have been. It was a one-off consult vs. my ongoing treatment is w/OMI who got me the IVIG and manages my care.

 

[DRCZ]

@Hip Per Dr Kaufman at OMI their results match up with the available data the Norwegians have produced so far.

Is there any source on this, or is this word of mouth?

 

[Jesse2233]

Is there any source on this, or is this word of mouth?

Word of mouth

 

[Gingergrrl]

Word of mouth

I do believe that OMI internally analyzes the data on their patients who have done Rituximab (RTX) either with them or with their own local doctors and then compares this to the reported results of Fluge and Mella. So even though it is anecdotal and not published, I do think it is accurate.