Input on Treatment Protocol

[Swim15]

Because I have nothing else better to do with my time, thought I’d post this here and at least see if anyone had some feedback. I’m in the planning stage of a treatment protocol that I’ll be finalizing with a doc soon and getting things together.

After a lot of research, I’m of the belief that CFS primarily has a viral trigger and it’s linked to non-cytolytic infections so that’s how I’ll be approaching this. I’ve got positive titers for EBV and HHV6, although not that high, and for 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.


General antiviral protocol to cover EBV/HHV6
• Valcyte


Antiviral protocol for Coxsackie
• Oxymatrine (oral) - titrating up
• Oxymatrine injection - tentative at 1/2 dose oral, titrating up
• Inosine - dose tbd
• Epivir - 150mg BID
• Umifenovir - 600-800mg/day


Herbal antivirals for Coxsackie
• High dose astralagus extract (like 1/4lb per day)
• High dose lizards tail
• Holy basil


General viral load reduction
• HBOT (Hoping to have a 1.3-1.5atm home chamber installed and use with 100% O2)
• Daily use for 1.5-2 hours for at least 90 consecutive days

• Weekly high dose major autohemotherapy IV ozone with multiple passes and 2,000-3,000ml blood per session


Will also be using copious amounts of antioxidants to make sure my body can make full use of the ozone and HBOT.

The plan is to follow the above protocol for 2-3 months and then evaluate to see if I can drop some of the therapies down to a maintenance level and then continue for another 3 months. Will probably continue the oxymatrine for a year if it works well.

Plan to tentatively start this in 4-6 weeks. General thoughts?

———-

I can go into some additional detail but I think oxymatrine is going to be the staple drug in this regimen.

Right now I’m thinking that I’ll start the antivirals first (along with ozone and HBOT) and get settled on those for 2-4 weeks if everything goes well hopefully.

After I’ve got the antivirals in my system, then start the oxymatrine and inosine and titrate up so they can go to work while the viral load is already being reduced hopefully.

——

In addition I’ll be using:

• ITPP (hopefully assuming supply holds out) at 500mg/week.
• Growth hormone at 4.5iu per day
• C60 in olive oil
• Possibly BPC-157

 

[Pyrrhus]

Ribavarin - dose tbd

See:
https://forums.phoenixrising.me/threads/enteroviruses-revisted.14478/page-12#post-2254959

 

[Swim15]

See:
https://forums.phoenixrising.me/threads/enteroviruses-revisted.14478/page-12#post-2254959

Somewhat undecided - may use Epivir in place of ribavarin

 

[Learner1]

Because I have nothing else better to do with my time, thought I’d post this here and at least see if anyone had some feedback. I’m in the planning stage of a treatment protocol that I’ll be finalizing with a doc soon and getting things together.

After a lot of research, I’m of the belief that CFS primarily has a viral trigger and it’s linked to non-cytolytic infections so that’s how I’ll be approaching this. I’ve got positive titers for EBV and HHV6, although not that high, and for 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.


General antiviral protocol to cover EBV/HHV6
• Valcyte


Antiviral protocol for Coxsackie
• Oxymatrine (oral) - titrating up
• Oxymatrine injection - tentative at 1/2 dose oral, titrating up
• Ribavarin or Epivir - dose tbd
• Umifenovir - 600-800mg/day
• Inosine - possible addition but haven’t decided yet

Herbal antivirals for Coxsackie
• High dose astralagus extract (like 1/4lb per day)
• High dose lizards tail
• Holy basil


General viral load reduction
• HBOT (Hoping to have a 1.3-1.5atm home chamber installed and use with 100% O2)
• Daily use for 1.5-2 hours for 90 consecutive days

• Weekly high dose major autohemotherapy IV ozone with multiple passes and 2,000-3,000ml blood per session


Will also be using copious amounts of antioxidants to make sure my body can make full use of the ozone and HBOT.

The plan is to follow the above protocol for 2-3 months and then evaluate to see if I can drop some of the therapies down to a maintenance level and then continue for another 3 months. Will probably continue the oxymatrine for a year if it works well.

General thoughts?

I see a top specialist and he kept me on Valcyte for 20 months, long enough to have four negative EBV PCR tests in a row. He is an experienced AIDS doctor and he learned the hard way not to underestimate the persistence of chronic smoldering herpes family viruses.

 

[Swim15]

@Hip any thoughts? Or any other mods or long timers?

Only been on the CFS stuff for a couple months so still learning and trying to get input from the people that have been around a while

 

[Hip]

@Hip any thoughts?

You are using many of the big guns of ME/CFS treatment!

I am very interested to see your outcome with the mild HBOT treatment.

I may have mentioned it before (my memory is terrible, so I may repeat myself), but we had one guy on this forum who had post-viral fatigue (PVF) for nearly a year, and he was worried it would turn into long-term ME/CFS. He was a patient of Dr Chia's, with active CVB4, but also pursued a number of other ME/CFS treatments in the hope of dodging the bullet of ME/CFS.

He did eventually get better, becoming well around the two year point, and credits his recovery to daily mHBOT. That's just an anecdote, but it did make me wonder whether mHBOT might be helpful for people in the early stages of illness, when they may still have PVF, and it may not have yet become long-term ME/CFS.

Nobody really knows the difference between PVF and ME/CFS, and why some people with PVF naturally recover without any treatment, but others enter into the long-term ME/CFS territory.

Since you were only hit with ME/CFS a year ago, you could still have PVF and even have a natural recovery from that. Sometimes patients can have PVF for over a year, and only naturally recover by the two year point. There was one EBV study which showed PVF after mononucleosis can last for a long time, and some patients only recover by the two year point.

 

[Hip]

Tenofovir is another one to consider: this has strong immunomodulatory actions, and Dr Chia finds this helps approaching 1 in 3 ME/CFS patients.

But I would not do too many things at once, otherwise if you get improvements, it can be hard to figure out what caused them.

 

[Swim15]

Appreciate it @Hip thank you. The more and more I’ve thought about this the more I can’t think of a specific event/viral trigger for me and, while I did have a period where my body got beat on some, it seemed to come on over a long period of time. Like I maybe had subtle CFS symptoms as early as 5-6 years ago but they were so mild it wasn’t anything I’d really pick out.

Hoping the combination lowers viral load enough and encourages some healing so my body can fight its way out.

Overall I know people spend $20k a pop on some treatments but I can do all this for under $10k and still have assets like the HBOT chamber and ozone machine set up I can sell down the road if needed to recoup a large parr if that.

Guess we will see. I’m sure I’ll be asking for more input before I go all in and update on progress

 

[Swim15]

Tenofovir is another one to consider: this has strong immunomodulatory actions, and Dr Chia finds this helps approaching 1 in 3 ME/CFS patients.

But I would not do too many things at once, otherwise if you get improvements, it can be hard to figure out what caused them.

I originally had it I my plan but decided that I’ve already got a lot going on. Just being male and combining oxymatrine with inosine has a good track record - much less 2 antiviral pharmaceuticals, some anti viral herbs, and the HBOT/ozone.

Hopefully that’s enough overkill to do it

 

[heapsreal]

Tenofovir is another one to consider: this has strong immunomodulatory actions, and Dr Chia finds this helps approaching 1 in 3 ME/CFS patients.

But I would not do too many things at once, otherwise if you get improvements, it can be hard to figure out what caused them.

Is that 1 in 3 pts with enterovirus causing cfsme or cfs in general? Then theres the UK dr who prescribes tenofovir and has a 50% rate of responders. That part of my brain that recalls names is roasted

 

[Hip]

Is that 1 in 3 pts with enterovirus causing cfsme or cfs in general?

I am not sure, I just read what Dr Chia said in this post:

Said we could try tenofovir, but he wants to try lamivudine first. Says 1 out of 3 patients respond well to lamivudine ("if you're responding you'll be able to tell"). Says that response rate is a bit lower for tenofovir

I'd like to know if tenofovir works best for certain types of viruses, like best for herpesviruses, or best for enteroviruses.

It's also possible tenofovir might actually work by suppressing HERV activation in ME/CFS patients. In which case, it would not matter which virus you have, if it's actually targeting HERVs.

Then theres the UK dr who prescribes tenofovir and has a 50% rate of responders. That part of my brain that recalls names is roasted

Dr William Weir. Last I heard was he has stopped using tenofovir. But that might also be due to restrictive regulations in the UK; Dr Myhill was prevented prescribing antivirals like Valtrex to ME/CFS patients.

 

[heapsreal]

I am not sure, I just read what Dr Chia said in this post:


I'd like to know if tenofovir works best for certain types of viruses, like best for herpesviruses, or best for enteroviruses.

It's also possible tenofovir might actually work by suppressing HERV activation in ME/CFS patients. In which case, it would not matter which virus you have, if it's actually targeting HERVs.





Dr William Weir. Last I heard was he has stopped using tenofovir. But that might also be due to restrictive regulations in the UK; Dr Myhill was prevented prescribing antivirals like Valtrex to ME/CFS patients.

I used tenofivir for a long period of time, i guess atleast 12 months. I improved the first 6 months or so then plateaued. My experience with it i put it down to some sort of immune modulating effects. There wad no immediate drop off effects when i stopped either. I may try it again and see if i notice similar changes?

 

[Pyrrhus]

It's also possible tenofovir might actually work by suppressing HERV activation in ME/CFS patients. In which case, it would not matter which virus you have, if it's actually targeting HERVs.

That is indeed the most likely explanation for the reported effects of tenofovir.

But it's not the only explanation. The original in vitro tests reported by Erik De Clercq in 2003 showed no activity of tenofovir against HSV or EBV.[1] Then a clinical trial testing a vaginal gel made of tenofovir for HIV prevention noted that the patients receiving the tenofovir gel had fewer HSV2 genital lesions than those not using the gel. A follow-up clinical trial designed to specifically see if tenofovir could reduce HSV2 shedding found a modest effect.[2] Further in vitro testing showed that tenofovir had some efficacy against HSV[3] and against EBV[4].

References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC207110/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4655855/
[3] https://pubmed.ncbi.nlm.nih.gov/29186456/
[4] https://www.pnas.org/content/117/22/12368

 

[Hip]

There wad no immediate drop off effects when i stopped either.

I've seen a couple of tenofovir success stories where the benefits gained on it remained after stopping; those are the best sort of improvements, the ones that persist even after stopping the drug.

 

[Hip]

Further in vitro testing showed that tenofovir had some efficacy against HSV[3] and against EBV[4].

That study you mentioned says something interesting:

In contrast to acyclovir, treatment of cells during latency for 24 h with TAF [tenofovir alafenamide] still inhibited EBV lytic DNA replication at 72 h after drug was removed. Our results suggest that tenofovir prodrugs may be particularly effective as inhibitors of EBV lytic reactivation

So maybe the prodrug version of tenofovir might be better for treating ME/CFS than regular tenofovir.

Note that tenofovir alafenamide is the prodrug of tenofovir disoproxil fumarate. 25 mg tenofovir alafenamide = 300 mg tenofovir disoproxil fumarate. 1

 

[heapsreal]

That study you mentioned says something interesting:


So maybe the prodrug version of tenofovir might be better for treating ME/CFS than regular tenofovir.

Note that tenofovir alafenamide is the prodrug of tenofovir disoproxil fumarate. 25 mg tenofovir alafenamide = 300 mg tenofovir disoproxil fumarate. 1

Prodrug found at alldaychemist?

 

[heapsreal]

That is indeed the most likely explanation for the reported effects of tenofovir.

But it's not the only explanation. The original in vitro tests reported by Erik De Clercq in 2003 showed no activity of tenofovir against HSV or EBV.[1] Then a clinical trial testing a vaginal gel made of tenofovir for HIV prevention noted that the patients receiving the tenofovir gel had fewer HSV2 genital lesions than those not using the gel. A follow-up clinical trial designed to specifically see if tenofovir could reduce HSV2 shedding found a modest effect.[2] Further in vitro testing showed that tenofovir had some efficacy against HSV[3] and against EBV[4].

References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC207110/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4655855/
[3] https://pubmed.ncbi.nlm.nih.gov/29186456/
[4] https://www.pnas.org/content/117/22/12368

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

I cant recall exactly but i think it reduces il6 and tnf alpha. Just those effects could help cfsme. Add to it the antiviral effects and its a usefull drug.
Isentress was the drug that was said to have direct effects on ebv but its priced out of the way from most people.

 

[Hip]

Prodrug found at alldaychemist

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.

 

[jaybee00]

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/

 

[Learner1]

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.

ME/CFS is a heterogeneous disease with multiple subsets of patients. Many researchers, including Jarred Younger and Bhupresh Prusty have found that there are indeed patients who have infections causing symptoms. Prusty's recently published paper showed how HHV6 causes Mitochondrial fragmentation, but he has publicly stated that EBV and other viruses can cause the same phenomenon.

Therefore, attacking these viruses with antivirals should reduce their effects.

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.

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/

Cyclophosphamide can promote cancer and damage mitochondria. It is not a benign drug.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5507312/

Cyclophosphamide leads to persistent deficits in physical performance and in vivo mitochondria function

https://www.fertstert.org/article/S0015-0282(17)30088-2/fulltext

Cyclophosphamide and its metabolite impact on fertilization through mitochondrial dysfunction