General Survey re: Anti-virals

[Gingergrrl]

This is not meant to be an official "poll" and I will try to make it as simple as possible. I'm trying to gather as much info as I can re: PWC's experiences with different anti-virals. Any answers I get will be extremely helpful for me and I really appreciate it. I've done site searches but the threads are so spread out (or from many years ago) that I wanted to gather some current info.

Here are my questions (and please respond in whatever format is easiest for you!)

1) Have you taken an anti-viral and if so, which one(s)?

2) How long did you take it?

3) What dose/amount did you take?

4) Which viruses did you have (EBV, HHV-6, etc...)

5) Did you have side effects?

6) Did you notice any changes in your symptoms (good or bad) from the anti-viral?

And of course any other info you can provide would be great. Thank you so much in advance to anyone who responds!

 

[Sushi]

@Gingergrrl43

I've taken Nexavir (injections) for about 3 years. I inject 3 times a week. I also use a fairly high dose of L-Lysine regularly.

It is hard to pin-point cause and effect, but my reactivated EBV was nearly back to the normal range (last time it was checked) after being very high and I no longer get herpes simplex outbreaks.

Sushi

 

[SOC]

1. Yes, I have taken antivirals, as have my daughter and uncle. We've all taken both Valtrex and Valcyte. I've also taken Equilibrant.
2. We have all taken them for several years straight and some of us have had to do multiple courses with years between.
3. Daughter and I have EBV and HHV6. Don't know what uncle had, but one was EBV and the other was HHV6 or CMV and maybe both.
4. Neither daughter or uncle had any noticeable side effects. I had what appeared to be an IRIS-like rxn about 4 months into Valcyte. It was ugly, but I'd do it again in a flash for the same amount of improvement.
5. Uncle went from about a 7/10 to cured (to all appearances). Daughter went from about 5/10 to remission, then slipped back to about 6 or 7/10 after a couple of years and went back on Valcyte and now seems to be in remission again. I went from about 2/10 to 5 or 6/10.

Daughter and I have taken other treatments that have helped symptoms -- OI treatments were probably the most significant of those -- but antivirals gave us by far the most improvement. My uncle had AV treatment and nothing else.

Symptoms most improved by AVs: Everything in the flu-like area -- fluish feeling, muscle aches, exhaustion, headaches/migraines, sensitivity to stimuli. Our MCS also seems to have cleared up with AVs. Valcyte, in particular, gives us big improvements in cognitive function. AVs have also helped with sleep-related issues like non-refreshing sleep, inability to fall asleep, and inability to stay asleep. Other treatments have also helped with those, though, so it's not just the AVs.

PEM seems to be the hardest symptom. Daughter and uncle seem to have eliminated or reduced to minimal their PEM using AVs, and while mine improved some, I can still PEM from ordinary activities. I am able to be up and about much more as a result of taking antivirals. I was mostly bedbound before AVs, now I tutor part-time and do a fair amount of light housework. I can drive now, which I couldn't pre-AVs, and get out in public with a wheelchair. This is all wonderful, but if I go over my threshold, which is roughly equivalent to walking about 100 yds, I still PEM.

 

[Gingergrrl]

@SOC What does "IRIS like rxn" mean?

 

[SOC]

@SOC What does "IRIS like rxn" mean?

IRIS = immune reconstitution inflammatory syndrome In simplest terms, it's a collection of things that happen in your body when a very poorly functioning immune system improves. It is scientifically documented in AIDS patients who get antiretroviral treatment and in other cases of immune suppression, but is not scientifically documented in ME. So, while I (and others) have had reactions to Valcyte which look very similar to IRIS reactions, we cannot be certain that is what it is. Therefore I call it an IRIS-like reaction.

 

[Gingergrrl]

@SOC thank you for explaining and I read the link and it makes sense. Was there any treatment for your IRIS type reaction or did you just have to wait it out? Is that more likely to happen with Valcyte vs. another av like Valtrex or Famvir?

 

[Sushi]

@SOC thank you for explaining and I read the link and it makes sense. Was there any treatment for your IRIS type reaction or did you just have to wait it out? Is that more likely to happen with Valcyte vs. another av like Valtrex or Famvir?

You can get IRIS reactions from other protocols as well. It isn't so much the medication but how your immune system responds. For instance, a few who take GcMAF (which affects the immune system), have had IRIS like reactions.

Sushi

 

[TigerLilea]

I haven't taken any antivirals.

 

[Gingergrrl]

You can get IRIS reactions from other protocols as well. It isn't so much the medication but how your immune system responds. For instance, a few who take GcMAF (which affects the immune system), have had IRIS like reactions.

Sushi

@Sushi thanks for the info. Are Nexavir and Gcmaf considered av's in the same treatment mechanism as valtrex, etc.? I didn't get the sense that the Dr I saw uses those?

 

[Hip]

I took the antiviral Nexavir for 4 months, and this coincided with a general period of significant improvement in my ME/CFS (but I also started taking other supplements at that time, so I cannot say for sure what caused the improvement).

Nexavir is effective for EBV† and HHV-6,† † is anti-inflammatory, and enhances blood flow in the brain.

Dr Enlander's says that Nexavir helps about 30% of his ME/CFS patients. He says the younger the patient is and the sooner they start it, the better the chances that it will work.

Dr De Meirleir says his ME/CFS patients generally experience a normalization of sleep within 3 days of commencing Nexavir, and approximately 70% of De Meirleir's patients experience a 20+ point increase on the Karnovsky scale as a consequence of taking Nexavir.

Nexavir is given by a tiny subcutaneous injection, which is fact very easy to do. I am a little squeamish with injections, but I quickly realized that subcutaneous injection are no big deal; in fact, I quite enjoyed doing it. @Sushi very kindly initially guided me though the learning process with Nexavir. If anyone wants further details about how to administer Nexavir, I am happy to post it up.

Note that other brands of Nexavir include: Kutapressin, Hepapressin, Biopressin and 4ME.

The cost of the 4ME brand that I took was 150 Euros ($200) per month.

More info on Nexavir:

Nexavir (Kutapressin) for CFS

Subjective Reduction in Symptoms of Chronic Fatigue Syndrome Following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial

Kutapressin for Chronic Fatigue Syndrome

 

[Hip]

By the way, has anyone tried both Valcyte and Nexavir at different times, and is thus able to compare the relative benefits and potency of each? Both Valcyte and Nexavir target herpes family viruses, but Nexavir has far fewer side effects than Valcyte, and Nexavir is usually much better tolerated than Valcyte.

Both drugs are pretty expensive: Nexavir (4ME brand) is around $200 per month, and Valcyte costs upwards of around $300 per month I believe (depending where you buy it).

Valcyte is effective for cytomegalovirus, EBV and HHV-6.

Nexavir is effective for EBV and HHV-6, is anti-inflammatory, and enhances blood flow in the brain.

 

[Gingergrrl]

@Hip Is Nexavir available in the US and why did you stop after four mos if it was helping?

ETA: I haven't taken anything yet so this poll is really helpful.

 

[Ruthie24]

@SOC- interesting that you noted your migraines improved with the AVs. I had noticed my migraines had totally disappeared while I was on Famvir. After stopping it, they rapidly reappeared at about the same frequency as before. While I was discouraged that the result didn't last after stopping the med, it was such a direct correlation it has to have been related. I'm back on the Famvir and the HAs are resolving again. While I don't want to be on Famvir for the rest of my life, it is really nice to have something that relieves those blasted headaches.

@Gingergrrl43 -not trying to hijack your thread. Since we've communicate by PM so much you already know all my info related to your questions here.

 

[Gingergrrl]

@Ruthie24 No worries and you are not hijacking my thread! Any info I can get on av's before my follow up appt at OMI is very helpful!

 

[Sushi]

@Sushi thanks for the info. Are Nexavir and Gcmaf considered av's in the same treatment mechanism as valtrex, etc.? I didn't get the sense that the Dr I saw uses those?

No, Nexavir works through other means.

Here is an abstract on it (Kutapressin is another name for Nexavir:

Antiviral activity in vitro of Kutapressin against human herpesvirus-6.
Ablashi DV1, Berneman ZN, Lawyer C, Kramarsky B, Ferguson DM, Komaroff AL.
Author information
Abstract
The recently discovered human herpesvirus-6 (HHV-6) is being associated with an increasing number of conditions in which there is evidence of immunologic dysfunction. A number of widely available antiviral agents have shown little or no activity against the virus. We found that Kutapressin (KU), a drug that has been available to practicing physicians for over 50 years, has potent, previously unexpected antiviral effects. Cells known to allow replication of HHV-6 were infected with the virus, under various conditions. Either pretreatment of the cells prior to infection or treatment shortly after infection, inhibited viral replication by > 90%. Indirect evidence suggests that KU may inhibit viral attachment to cellular receptors, and inhibit intracellular maturation of the virus. Given these in vitro findings, and the low frequency of toxicity reported with the use of KU, clinical trials of this drug in patients with evidence of reactivated HHV-6 infection would seem to be warranted. http://www.ncbi.nlm.nih.gov/pubmed/7893985

GcMAF increases the number and activity of macrophages. I found this "kid's biology (my speed! ) explanation of what macrophages do:

Think of macrophages as cell-eating machines. Their name actually means “big eater” in Greek. Macrophages are the biggest type of white blood cells - about 21 micrometers - or 0.00083 inches. Still too small to see with your eyes, but big enough to do the important job of cleaning up unwanted viruses, bacteria, and parts of dead cells.

Macrophages don’t eat cells the same way you might eat your food. Instead, the eating machines engulf viruses and bacteria. This is called phagocytosis. First, the macrophage surrounds the unwanted particle and sucks it in. Then, the macrophage breaks it down by mixing it with enzymes stored in special sacs called lysosomes. The leftover material is then pushed out of the cell as waste.

http://askabiologist.asu.edu/macrophage

Kinda cute!
Sushi

 

[Sushi]

@Hip Is Nexavir available in the US and why did you stop after four mos if it was helping?

ETA: I haven't taken anything yet so this poll is really helpful.

Yes, Nexavir is available in the States through one distributor: Johnson compounding pharmacy http://www.naturalcompounder.com/,
though it is not compounded, it is purchased from NexcoPharma. It is expensive but my insurance pays for most of it.

Sushi

 

[Gingergrrl]

@Sushi thanks and I am going to ask my Dr about Nexavir & Gcmaf at my appt as well as immune modulators.

@Ruthie24 Do you know if OMI uses those meds? I am not necessarily saying those are the ones I need and it will depend which viruses they find, etc, but do you know if they prescribe those?

 

[SOC]

@SOC thank you for explaining and I read the link and it makes sense. Was there any treatment for your IRIS type reaction or did you just have to wait it out? Is that more likely to happen with Valcyte vs. another av like Valtrex or Famvir?

I just waited it out. I didn't know what it was at the time, and it was accepted that ME patients often had an inexplicable "bad patch" during Valcyte treatment.

 

[Ema]

There was no comparison for me between the relative potencies of Nexavir and Valcyte. Nexavir did help some but nothing like Valcyte.

I've taken Famvir, Valtrex and Valcyte. I also did IV cidofovir for 9 months.

I have high titers to EBV, hhv6 and CMV.

I didn't really have any side effects but I'm perplexed as to why I've regressed over the past 9 months. I was doing much better last summer and now I'm back to mainly bedbound. Of course, I also had an interruption in my Hizentra treatment which didn't help. And don't get me started on my adrenals. I think CMV is trying to kill them!

 

[heapsreal]

Famvir 250mg twice a day improved me from a 3 out of 10 to a 9 in 12 months. Switched to valtrex as it was cheaper at the time and i relapsed back to a 3 within a few months.

Back to famvir and improved to a 6 out of 10. Added valcyte to famvir. Started at 450mg for 6 months than increased to 900mg for a further 6 months. This got me to an 8 out of 10. I stayed on valcyte 450mg plus famvir for a further 6 months and stayed at 8 out of 10. Currently just on famvir 250mg twice a day to maintain this. I'm working 30hrs a week on average symptoms have improved.

I have probably been on antivirals a total of 4 years which keeps me functioning at a higher level. At the moment if I stop avs, symptoms return quick but are reversed quickly when I start back on famvir.

Recently energy improved with larger doses of q10 400mg and acetyl carnitine 1000mg. Also using yucca and okg to lower ammonia which is a neurotoxin which can also cause issues. So these measure I think have helped a lot recently.

My viruses are ebv cmv and possibly chickenpox virus which was the onset of cfs for
Me.