My Experience on AntiRetroVirals

[Hip]

@Ellkaye

One other thing you have not addressed in this antiretroviral theories of ME/CFS as that ME/CFS patients who are also on antiretrovirals for HIV infection do not seem to improve as a result of their antiretroviral regimen.

One needs to ask why.

Now I guess it is possible that not all antiretrovirals effectively target the gammaretroviruses (like murine leukemia virus and feline leukemia virus) speculated to be involved in ME/CFS. (Dr Sidney Grossberg in 2001 found JHK retrovirus, from the murine leukemia virus family, in one ME/CFS patient; he is still working on JHK in ME/CFS.)


The drugs you are taking do inhibit feline leukemia virus:

Raltegravir inhibits feline leukemia virus (ref: 1) and tenofovir inhibits feline leukemia virus (ref: 1)

Interestingly that second study also discovered that the anti-cancer drugs decitabine and gemcitabine inhibit feline leukemia virus.



But I am not sure if other antiretroviral drugs that HIV patients commonly use also have anti-gammaretrovirus and anti-leukemia virus effects.

So if we assume there is a leukemia virus-type retrovirus in some ME/CFS patients, I guess only certain HIV antiretroviral drugs like raltegravir and tenofovir might be effective against it. So that might explain why ME/CFS patients who also have HIV do not see an improvement in their ME/CFS symptoms from the antiretrovirals — because they are not taking the right antiretrovirals which target leukemia virus-type retroviruses.

A good list of anti-retrovirals fro HIV is give here. Perhaps you might want to check and Google search through them, and see if any others have anti-leukemia virus effects.


EDIT: I have done this search for you: the Boolean Google searches here and here cover all the HIV antiretrovirals listed in the above link, and look to see if they inhibit gammaretroviruses and leukemia virus-types retroviruses. Most do not appear to, apart from a new drug called elvitegravir (Vitekta) (ref: 1)

 

[barbc56]

There's also the point that since a drug might help other conditions this doesn't necessarily mean you have the condition the medication was originally intended.

The example that comes to mind is antibiotics and how they sometimes help reduce inflamation.
According to my urologist he has seen patients who are given an antibiotic for a suspected UTI and while the symptoms improve the culture comes up negative. He theorizes there was inflamation causing the symptoms and that may warrent further investigation.

While these are certainly anecdotal reports by he and other doctors there is likely medical plausibility that explains this phenomenon.

When it comes to retroviruses, I think the plausibility of an RV being out there is low. Especially considering evidence from the last five years as well as the technology available today.

Barb

 

[Hip]

(2)my cd3,4,8 counts multiplied x2.5 on the two arv's.

That seem like a very large increase in your CD3, CD4 and CD8 counts, if they each jumped up by a factor of 2.5 after taking antiretrovirals. I take it they must have all been pretty low.

But I don't think ME/CFS is generally associated with low counts of these cells. Dr John Chia has observed that during acute enterovirus infection, CD3, CD4 and CD8 counts may go down for a short time, but return to normal in 6 to 8 weeks after resolution of the acute infection. 1

So low CD3, CD4 and CD8 counts is not an indicator for ME/CFS.

 

[ScottTriGuy]

I started on Raltegravir in late Nov - my PEM threshold has not moved, but I am sleeping better.

I plan to give it 6 months.

 

[Ellkaye]

I started on Raltegravir in late Nov - my PEM threshold has not moved, but I am sleeping better.

I plan to give it 6 months.

Viread?

 

[Ecoclimber]

@Ellkaye
What proof can you provide that you are taking an ARV and that you are improving on them as stated in your posts? Who diagnose you with ME/CFS?

As to the other issues and discussions you posted, you can slog your way through the XMRV ARCHIVES as all your questions and answers have been discussed to the point of ad nauseum in the numerious threads.

Eco

 

[Hip]

What proof can you provide that you are taking an ARV and that you are improving on them as stated in your posts?

That is a bit of an odd question. You want @Ellkaye to provide proof he is swallowing his pills?

 

[ScottTriGuy]

Viread?

Nope, but also on kivexa and viramune.

 

[Hip]

One other thing you might consider, @Ellkaye, is whether your illness might be due to the viruses HTLV I or HTLV II (full name is human T-lymphotropic virus), though this is a remote possibility. These are human retroviruses that are endemic to certain areas and to certain groups, and can cause a fatiguing condition (though the symptoms of these viruses take decades to appear — however they can be contracted as an infant from breastfeeding).

HTLV could provide an alternative explanation of why antiretroviral drugs helped you. Raltegravir and tenofovir both inhibit HTLV.

In the UK, only 1 person in 3000 carries HTLV I, and the prevalence of HTLV II is even lower.

However, HTLV I is endemic in areas such as Florida USA, Japan, the Caribbean and South America, where the prevalence can be as high as 1 in 100. In the US and Europe, HTLV II infection is highest among injecting drug users.

Though the vast majority of people (99%) who have these viruses in their body remain healthy, and never manifest any of the diseases HTLV can cause.

You can be tested for these viruses.

More info:
What is HTLV-I
What is HTLV-II

Some symptoms of conditions caused by HTLV given here.

 

[Ellkaye]

Nope, but kivexa and viramune.

Ok,cos two out of three of the arv's against xmrv are needed i believe. Think it was an ila singh paper.

 

[Hip]

I started on Raltegravir in late Nov - my PEM threshold has not moved, but I am sleeping better.

I plan to give it 6 months.

I think @Ellkaye said that he started taking tenofovir 18 months ago, and then added raltegravir 6 months ago.

Ellkaye, did you notice when your improvements first started to manifest? I know it can be hard to gauge and note these things.



By the way, regarding what you said earlier:

Most of my herpes virus tests are negative or only intermittently weakly positive(hhv6)

When you say "negative", I take you mean you have HHV-6, EBV and possibly cytomegalovirus in your body, but these infections are not reactivated (ie, the titers are not elevated).


When Prof Jose Montoya was conducting his studies on Valcyte for ME/CFS, he found that the effectiveness of Valcyte did not depend on the patients' initial titers to HHV-6 or EBV. So the idea that Valcyte will only be effective for those with high titers to herpes family viruses is not correct.

 

[Ellkaye]

I have no ebv or cmv. Never been infected at all. There are cases of people having never been infected. So zero titers as never ever infected. Rare but possible. So i learned.
Only hhv6 is positive sometimes on sometimes off (flu season and rv reactivates it no doubt...?). But unspecific as that phenomena can happen generally.
the arv's are thus not hitting all the herpes viruses people are often misled about .
Yes viread first for 12 months. Upward curve. Then Raltegravir after that at 12 months.
Now : Viread 25/31 days per month.
Raltegravir 11/31 days per month.Not more as far too strong to take more than that.
Just coming out of a flu/cold and notice that the arv's effect is stimulating me. With the cold/flu the body suffers still even though the arv s help sustain u. And then once the cold/flu clears the arv's are able to fully work their effect in more peace. Nice feeling when the body resets from the flu leaving and having the extra benefit of the arv's kicking in. Benefit on viread was felt within a week. But then needed to add raltegravir after a year for 11 days per month

 

[Hip]

I have no ebv or cmv.

That is not entirely unusual. EBV is found in around 95% of adults, so 1 in 20 adults will not have it in their body. Cytomegalovirus is found in around 60% of adults, so many adults will not have it.

Though nearly everyone has HHV-6, as this virus is found in close to 100% of adults.

What about enteroviruses? Were you tested for coxsackievirus B and echovirus? These are two enteroviruses strongly linked to ME/CFS.

Benefit on viread was felt within a week.

Those fast-appearing benefits are more likely due to the anti-inflammatory effects of tenofovir (Viread), rather than any antiviral effects, because antiviral effects take much longer to manifest.

I mentioned in another post that Dr Jamie Deckoff-Jones also found that tenofovir (Viread) would have a relatively immediate beneficial effect on her ME/CFS symptoms within a timescale of days; and she observed she felt worse a few days after stopping tenofovir.

Not saying that tenofovir is not having an antiviral action; it may be having some antiviral effects; but the antiviral effects will work on a timescale of months, not days.

 

[ScottTriGuy]

Though nearly everyone has HHV-6, as this virus is found in close to 100% of adults.

I must be the exception that proves the rule, my doc said I don't have HHV-6. I was kind of surprised.

 

[Hip]

I must be the exception that proves the rule, my doc said I don't have HHV-6. I was kind of surprised.

Must be. I think even by just the age of 2 years old, 80% of infants will have already picked up HHV-6. So by the time you get to adulthood, nearly everyone has it. EBV though is normally picked up later, in the teenage years or early 20s.

 

[Mary]

Now I guess it is possible that not all antiretrovirals effectively target the gammaretroviruses (like murine leukemia virus and feline leukemia virus) speculated to be involved in ME/CFS. (Dr Sidney Grossberg in 2001 found JHK retrovirus, from the murine leukemia virus family, in one ME/CFS patient; he is still working on JHK in ME/CFS.)

@Hip - can you point where it is speculated that feline leukemia virus is involved in ME/CFS? Any links would be appreciated - thanks!

 

[Hip]

@Hip - can you point where it is speculated that feline leukemia virus is involved in ME/CFS? Any links would be appreciated - thanks!

It is gammaretroviruses (murine leukemia virus and feline leukemia virus are just examples of these) that Dr Judy Mikovits apparently found in ME/CFS patients (but she did not test the healthy controls, so the validity of this finding is under question). See this post. This was a separate finding to her now invalidated discovery of XMRV in ME/CFS patients.

In 2001 Dr Sidney Grossberg found a gammaretrovirus called JHK retrovirus in one ME/CFS patient, which is related to the murine leukemia virus. His latest paper is here.


All of this is the very flimsiest of evidence at this stage.

 

[ScottTriGuy]

Must be. I think even by just the age of 2 years old, 80% of infants will have already picked up HHV-6. So by the time you get to adulthood, nearly everyone has it. EBV though is normally picked up later, in the teenage years or early 20s.

I just double-checked my actual records, and indeed the lab did PCR for HHV-6 a and b.

What my doctor has not been telling me is that my absolute CD3, CD8 and CD8 percentage are high, and CD4 / CD8 ratio is low.

She has never mentioned (nor my previous doctor) that my MCV and MCH are always high.

And now I find out (and I don't know why the doc didn't mention this as well) that my CO3 is high and Anion Gap is low and I have urineleukocytes.

Grrrrr.

I have no idea what, if any, implications these have, but if anyone has insight...

 

[halcyon]

She has never mentioned (nor my previous doctor) that my MCV and MCH are always high.

This can be caused by reverse transcriptase inhibitors which I assume you are on.

 

[Mary]

It is gammaretroviruses (murine leukemia virus and feline leukemia virus are just examples of these) that Dr Judy Mikovits apparently found in ME/CFS patients (but she did not test the healthy controls, so the validity of this finding is under question). See this post. This was a separate finding to her now invalidated discovery of XMRV in ME/CFS patients.

In 2001 Dr Sidney Grossberg found a gammaretrovirus called JHK retrovirus in one ME/CFS patient, which is related to the murine leukemia virus. His latest paper is here.


All of this is the very flimsiest of evidence at this stage.

Thank you. My brain had started spinning because many years ago I had a cat who died from leukemia (long before I got sick with CFS/ME) - I had misunderstood your post.