Input on Treatment Protocol

[jaybee00]

Absolutely correct, it is not a benign drug. A lot of people on this forum believe that they can cure their MECFS with benign treatments like various B vitamins. In my opinion, this is not a realistic view. It is likely that the treatments for MECFS will be non-benign drugs similar to those used for MS or RA.

https://www.nationalmssociety.org/Treating-MS/Medications

 

[Learner1]

75% of drugs are mitochondrial toxins, according to a team of researchers' presentation I saw at the United Mitochondrial Disease Foundation conference I went to. Not a desirable thing for a disease where impaired mitochondrial function is a feature.

B vitamins are intricately involved with mitochondrial function and can be quite helpful. They are not in themselves a cure, but many people are fatigued and have neurological issues simply because of B12 deficiency. There are many roles for B vitamins to play in treating ME/CFS, although you are correct and that other treatments are needed as well.

 

[Swim15]

Unfortunately there is no evidence that your treatment protocol will treat your ME/CFS. If anti-virals "work" for you, then it is by a different mechanism than killing viruses. This was pointed out by Naviaux--you can search this forum or his website for this mechanism. Typically antivirals will work for a while and then stop working.

About the only thing that there is some evidence for treating ME/CFS is cyclophosphamide (phase II) https://forums.phoenixrising.me/thr...ase-ii-study-rekeland-fluge-mella-2020.80066/

There’s decades of evidence....otherwise almost every CFS specialist in the country wouldn’t treat with antivirals lol.

But no, of course antivirals don’t kill viruses. They decrease the viral load and allow the body to regain its footing over non cytolytic infection and/or modulate the immune system depending on the drug.

 

[Pyrrhus]

It tenofovir alafenamide is available, for example at Buy Pharma, but unfortunately it seems to be mixed with other antiretrovirals. I could not find tenofovir alafenamide for sale on its own.

Whether this prodrug is any better than regular tenofovir (tenofovir disoproxil fumarate) in practice I am not sure, as although it is a more potent antiviral, dosages used are lower.

Actually, they are both prodrugs of tenofovir. The confusion arises because the newer prodrug (alafenamide) was introduced by Gilead when the older prodrug's patent was about to expire. Gilead, of course, claims that the new drug is superior to the old drug:

Gilead has created a second pro-drug form of the active drug, tenofovir diphosphate, called tenofovir alafenamide. It differs from tenofovir disoproxil due to its activation in the lymphoid cells. This allows the active metabolites to accumulate in those cells, leading to lower systemic exposure and potential toxicities.[9]

 

[Pyrrhus]

One would think if it works against hv2 and ebv then it should have effects on varicella, cmv and hhv6.

Varicella maybe, but I'm not so sure about CMV or HHV6. Anti-herpetic antivirals generally have good efficacy against certain herpesviruses, but not against all herpesviruses.

I cant recall exactly but i think it reduces il6 and tnf alpha.

I haven't heard that. If you come across a paper that discusses immunomodulatory effects of tenofovir, I would be very interested in hearing about it.

Hope this helps.

 

[jaybee00]

They damage mitochondria

https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/

Read answer to questions 7 and 11. If you think you are smarter than Ron Davis and Naviaux... good luck to you.

“...using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME / CFS.”


Why don’t you post all the high quality studies showing long term outcomes with treatment with anti-virals... there are none.

 

[Learner1]

They damage mitochondria

https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/

Read answer to questions 7 and 11. If you think you are smarter than Ron Davis and Naviaux... good luck to you.

“...using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME / CFS.”


Why don’t you post all the high quality studies showing long term outcomes with treatment with anti-virals... there are none.

Your advice is extremely dangerous. I'm listening to doctors like Dan Peterson, Susan Levine, David Kaufman, Nancy Klimas, etc. who prescribe antivirals for patients whose labs indicate a viral component to their illness. They are not commonly prescribing cyclophosphamide. There is also the experience of Martin Lerner.

Robert Naviaux is a very dedicated researcher, but he is not a clinician. I have had 2 in-depth discussions with him about my specific labs, diagnoses, and treatments, and he was very encouraging about the approach my doctors and I were taking.

We are all individuals with individual genetics and environmental factors contributing to out illnesses and there is no blanket, one size fits all, treatment. Personalized medicine, taking these various factors into account is more prudent than a copycat approach. I would be very hesitant to believe as any random, double blind placebo study purporting to cure as anyone with ME/CFS, because, due to the many lavs I've seen and discussions with many, many patients, it is very clear that, at best, we are different subsets of some umbrella problem.

 

[jaybee00]

I am not promoting cyclophosphamide—I am pointing out that there is some positive evidence for its use—unlike the “treatments” that you promote here.

I’m not going to reply to this thread any further.

 

[Swim15]

They damage mitochondria

https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/

Read answer to questions 7 and 11. If you think you are smarter than Ron Davis and Naviaux... good luck to you.

“...using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME / CFS.”


Why don’t you post all the high quality studies showing long term outcomes with treatment with anti-virals... there are none.

Yes they can inhibit mitochondrial function...so? That’s not the problem. It’s the fact that a high viral load is causing CFS...remove the viral load and mitochondria function normally. No problem.


As far as studies you probably know there aren’t any. But why has every successful CFS doc treated people in such a way to reduce viral load if it doesn’t work?

*Edit: there are some studies but as many will point out - they aren’t usually to be taken at face value. The ones I’ve seen have people in the placebo arm recover so I’d doubt a lot of the time if they are using patients with real CFS.

While I wouldn’t say ozone or HBOT will necessarily treat CFS directly, because I think that’s unlikely, there was an Italian study where they had an 80% significant response rate to ozone though. That one is pretty well known

 

[heapsreal]

It tenofovir alafenamide is available, for example at Buy Pharma, but unfortunately it seems to be mixed with other antiretrovirals. I could not find tenofovir alafenamide for sale on its own.

Whether this prodrug is any better than regular tenofovir (tenofovir disoproxil fumarate) in practice I am not sure, as although it is a more potent antiviral, dosages used are lower.

I used the regular tenofovir, if that helps anyone.

 

[heapsreal]

Varicella maybe, but I'm not so sure about CMV or HHV6. Anti-herpetic antivirals generally have good efficacy against certain herpesviruses, but not against all herpesviruses.

I haven't heard that. If you come across a paper that discusses immunomodulatory effects of tenofovir, I would be very interested in hearing about it.

More of an article than a study. Different IL markers then i mentioned above, cfs brain sorry.
https://www.poz.com/article/hiv-tenofovir-inflammation-20217-1101

 

[Hip]

Unfortunately there is no evidence that your treatment protocol will treat your ME/CFS. If anti-virals "work" for you, then it is by a different mechanism than killing viruses. This was pointed out by Naviaux--you can search this forum or his website for this mechanism.

It's not clear whether Dr Robert Naviaux still holds his opinion that viruses are not involved in ME/CFS, as Naviaux is now collaborating with virologist Dr Bhupesh Prusty, whose ME/CFS research focuses on HHV-6.

Also, Naviaux does not seem to be aware of non-cytolytic enteroviruses: he says here that:

While Coxsackie is an RNA virus related to poliovirus, antibody titers can increase to this virus too, even though it cannot establish a chronic or latent infection.

Lots of doctors are taught that coxsackievirus B cannot establish a chronic infection, because RNA viruses cannot enter the state of latency and thereby form a long-term presence in the body (it is DNA viruses that use latency as a survival tactic). So Dr Naviaux is not alone in having this belief that CVB cannot be chronic.

But this belief is not correct, because we now know coxsackievirus B infections can transform into a mode of infection which is latency-like and chronic: this mode is called a non-cytolytic infection.

It is specifically the non-cytolytic form of CVB which has been found in ME/CFS patient tissues.

 

[Pyrrhus]

More of an article than a study. Different IL markers then i mentioned above, cfs brain sorry.
https://www.poz.com/article/hiv-tenofovir-inflammation-20217-1101

Thanks! Here's the paper discussed in your article:
https://journals.lww.com/jaids/Full...ir_Selectively_Regulates_Production_of.4.aspx

I have added this paper to my reading pile.

 

[Rufous McKinney]

I see a top ME/CFS expert who found my EBV and 3 other herpes family viruses. As the other specialists would do, he put me on an antiviral, valganciclovir, for 20 months, which vastly improved my function - my cognitive symptoms reduced within 30 days

Why does my Primary doctor indicate- I'd need to go to Stanford to obtain antivirals.

I don't understand this.

What "specialist" can I see to find out about getting them?

 

[Swim15]

Why does my Primary doctor indicate- I'd need to go to Stanford to obtain antivirals.

I don't understand this.

What "specialist" can I see to find out about getting them?

Lots of doc prescribe antivirals, your PCP is nuts for saying that. I’d just go see a new doc, preferably one with at least some knowledge or experience with CFS

 

[bensmith]

Your advice is extremely dangerous. I'm listening to doctors like Dan Peterson, Susan Levine, David Kaufman, Nancy Klimas, etc. who prescribe antivirals for patients whose labs indicate a viral component to their illness. They are not commonly prescribing cyclophosphamide. There is also the experience of Martin Lerner.

Robert Naviaux is a very dedicated researcher, but he is not a clinician. I have had 2 in-depth discussions with him about my specific labs, diagnoses, and treatments, and he was very encouraging about the approach my doctors and I were taking.

We are all individuals with individual genetics and environmental factors contributing to out illnesses and there is no blanket, one size fits all, treatment. Personalized medicine, taking these various factors into account is more prudent than a copycat approach. I would be very hesitant to believe as any random, double blind placebo study purporting to cure as anyone with ME/CFS, because, due to the many lavs I've seen and discussions with many, many patients, it is very clear that, at best, we are different subsets of some umbrella problem.

I am in contact with levine, is she good?

 

[Learner1]

I am in contact with levine, is she good?

Yes, for immune and infection components of ME/CFS. I don't believe she has any functional medicine or nutritional background, so it might be wise to go elsewhere for that. specifically out of New York State, where you can't have most of the most useful tests run.

 

[sometexan84]

@Swim15

Coxsackie virus 1 and 6 but still need to see what the final titers are through the ARUP test. This protocol is based on the assumption that they’re high which I’m sure they will be if the popped on the standard antibody test.

If you'd like to see the difference in Coxsackie results between ARUP and others, check out the (2) labs I got in this thread....
https://forums.phoenixrising.me/thr...ie-b-should-i-be-concerned.59438/post-2301863

It's crazy how different they are using the same blood sample. Did you ever get your ARUP labs back?

 

[bensmith]

@Learner1 thanks, what is that last sentecne, sorry brain fog. so go out of ny if you want better testing for fucntional medicine ?

 

[Swim15]

@Swim15

If you'd like to see the difference in Coxsackie results between ARUP and others, check out the (2) labs I got in this thread....
https://forums.phoenixrising.me/thr...ie-b-should-i-be-concerned.59438/post-2301863

It's crazy how different they are using the same blood sample. Did you ever get your ARUP labs back?

I did and there were ZIP across the board for Coxsackie virus interestingly enough