Seeking input on AVs, timing of starting them, etc

[Ruthie24]

Hi! Newbie posting here but have been trying to read and absorb as much as possible on this topic the past several months. It's always different when it actually comes down to YOU having to make the decision though, isn't it?

I just got my test results back and have "sky high" levels of CMV and EBV. NK count was 5 and NK function was 6. I also have pretty significant POTS/NMH and migraines etc and am on a lot of meds for those things already. Doctor has suggested valcyte and/or rutuximab as possibilities, although he did briefly mention possibility of Famvir and valcyte together as well.

I'm currently in a major relapse and have been for a couple months, so not very functional...probably a 2-3 right now. I have several big family events (3 graduations/wedding) coming up this spring and summer involving my kids so am trying to decide if it would be better to start the meds now or wait until those events are done to start them? Sounds like side effects can be tough on people. OTOH, I'm not doing so hot now anyway, so maybe wouldn't be able to make me much worse- at least functionally?

Any input would be greatly appreciated!

Thanks!




.

 

[heapsreal]

Maybe start with famvir as it is normally more easy to handle then valcyte as well as cheaper and less toxic and requires less monitoring from your doc. Some have found if they used famvir or valtrex first that if/when they add valcyte down the track that its easier to tolerate. Famvir should definately help with ebv, this can free up more of your immune system to then go after cmv, also i have found famvir has helped with cmv but later on i did need to add valcyte. doses of famvir seem to vary alot between people, i have found 250mg twice a day enough for me others have used doses like 500mg 3 times a day, so doses is trial and error.ALso u could use immunovir to help improve nk function as well.

Hopefully others with pots/oi can add their experience with treatments they have used.

i hope this helps, sounds like your doc is up with current trends in cfs/me.

cheers!!

 

[Ruthie24]

Thanks for the advice, Heaps! From some of your earlier posts it looked like maybe you thought that it would be beneficial to start the AV first and then add in something like immunovir later? Is that still your thinking?

When I asked the doc about Immunovir, he didn't seem to be a big fan. Said it only would increase the counts by a small percentage and wouldn't be enough to make the changes I needed to make in NK function. Seemed to think the AV meds would do that on their own? He did say I could try taking D-ribose (? I think it was?) as see if that helped? Is that somehow related?

I'm not as "up" on all the supplements as I should be I suppose.

 

[heapsreal]

Thanks for the advice, Heaps! From some of your earlier posts it looked like maybe you thought that it would be beneficial to start the AV first and then add in something like immunovir later? Is that still your thinking?

When I asked the doc about Immunovir, he didn't seem to be a big fan. Said it only would increase the counts by a small percentage and wouldn't be enough to make the changes I needed to make in NK function. Seemed to think the AV meds would do that on their own? He did say I could try taking D-ribose (? I think it was?) as see if that helped? Is that somehow related?

I'm not as "up" on all the supplements as I should be I suppose.

My thoughts are that if u take something to increase immune function that u would possibly get more die off type reactions then if u went on av's first and added an immune mod later. Some people would rather use an immune mod then use a med like antivirals thinking it will get the job done on its own but i think in the majority of cases most will need an av. My thoughts and suggestions come from what i have read from others and my own personal experiences but at the end of the day we just cant predict what will happen, so i dont think there is a right answer.

Its probably best to do things in a progressive order say famvir first then add valcyte and later an immune mod, its probably easier to judge there affects maybe and not have to go past step 1 or maybe go all the way to step 3? Your doc is probably right in that immunovir adds a small improvement, so use the treatments that have more improvement first and then hopefully we can get more out of the other treatments later on.

My experience is that antivirals didnt improve my nk function but they could for others. Immunovir only seems to have improved my nk numbers slightly but i will take that, i dont know function as i cant get that tested anymore for now, maybe it improved nk function alot more then numbers but i just dont know. There have been enough people use immunovir and had nk function improve on it so i think its worth trying.

I did use an immune mod cycloferon and this dramatically increased my nk function and i did feel better on it. this test was done when i was in the phanu nk function study in cfs/me, so they measured nk function as well as bright cell function which may be a good biomarker for us. cycloferon had no improvement on nk bright cell function but did improve general nk function when tested on cycloferon, so might only be helping a certain part of our nk function, if that makes sense.

d ribose is just an energy type supp, some find it helps and some dont but i dont think it would have much affect on immune function though.

read everything u can about what others have done and then just go for it, it really ends up a work in progress. Also treating chronic viruses and fixing immune dysfunctions all take time, several months before u notice symptoms improving and a good 12 months where u can turn around and see how far u have improved. Also get tested for common bacterial infections in cfs/me and maybe do a 6 month treat with doxycycline as its affective against many of them and if u find good improvement then u know u had some dam bacterial infection going on as well.

i hope i have helped u some, u seem very intellegent already with the knowledge u are showing, but if i can answer any other questions for u i will give it a try. Always good to start a treatment blog so others coming behind you can pick up these bits of knowledge.

cheers!!!

 

[Ema]

Hi! Newbie posting here but have been trying to read and absorb as much as possible on this topic the past several months. It's always different when it actually comes down to YOU having to make the decision though, isn't it?

I just got my test results back and have "sky high" levels of CMV and EBV. NK count was 5 and NK function was 6. I also have pretty significant POTS/NMH and migraines etc and am on a lot of meds for those things already. Doctor has suggested valcyte and/or rutuximab as possibilities, although he did briefly mention possibility of Famvir and valcyte together as well.

I'm currently in a major relapse and have been for a couple months, so not very functional...probably a 2-3 right now. I have several big family events (3 graduations/wedding) coming up this spring and summer involving my kids so am trying to decide if it would be better to start the meds now or wait until those events are done to start them? Sounds like side effects can be tough on people. OTOH, I'm not doing so hot now anyway, so maybe wouldn't be able to make me much worse- at least functionally?

Any input would be greatly appreciated!

Thanks
.

Hi Ruthie -

Welcome to the group!

Heaps has given you some excellent advice in my opinion and I will just take a moment to add my own 0.02 cents.

Did you actually have viral titer tests or did you have ELISA testing (the former is usually reported as a ratio and the latter as a single number)? High numbers on ELISA testing can be used to indicate a reactivated or chronic infection which would benefit from treatment but do not necessarily indicate the strength of the infection. For example a result of 8 and a result of 64 would both be highly positive on a CMV ELISA test, but the latter result is not necessarily some 8 times worse than the former. You need the titer testing to make those sorts of quantitative judgments.

I have all those viral infections as well as HHV6 and started with Nexavir which is an injectable antiviral and immune modulator. I was very pleased with it though it can be expensive and harder to get because doctors aren't all that familiar with it always. After about 6 months, I added in Famvir at 500 mg three times a day. I've recently switched to acyclovir 800 mg four times a day due to insurance reasons. I'm also considering Valcyte but am holding off for a variety of reasons.

Another immune modulator is inosine which is readily available over the counter (you can also search the forum as there are posts on it). You might wish to test your uric acid level prior to starting. Many with autoimmune diseases have low uric acid and find inosine extremely helpful. However, if you have high uric acid levels, inosine can raise them and cause gout which is not desirable. It's a simple blood test.

If you have high viral levels, I think it is really important to also test your immune function preferably before starting on antiviral therapy to check for IgG deficiencies. This is also a simple blood test and you want to test for total IgG and subclasses 1-4. "Normal" people with functioning immune systems should be able to keep these viruses in check and if you can't, it suggests that there may be a flaw in your immune system that might also need to be treated which might actually get at the root cause of illness. It's worth looking anyway. I currently use Hizentra (subcutaneous immunoglobulin therapy) along with antivirals and antibiotics to keep infections under control.

I wouldn't hesitate to start Famvir or acyclovir before the summer events but I might be more hesitant to start Valcyte.
Feel free to ask whatever questions you might have...

Ema

 

[Ruthie24]

@Heaps- really appreciate your input. All your practical experience helps, well....heaps!

I seem to have chronic sinusitis so you may have a good point about the doxycycline. I know you had a similar issue. I had a major sinus infection recently and did augmentin which helped a lot, but now it's starting to creep back in again and we're fast approaching my big spring allergy season which will make everything that much worse. Allergies seem to do a number on the immune system and thus all of this other stuff too, at least for me. I'm also being treated for mast cell issues.

I think you had mentioned that cyclferon was also cheaper than immunovir, so that may be a good option to check into if it helps with the nk function that much.

My autonomic dysfunction is such that "energy supplements" make me a little leary, so I may hold off on the d-ribose. Thanks for that info.

I'm trying to learn all I can about this crazy illness. It's the computer that I'm dismal at dealing with. What's a treatment blog? LOL

 

[Ruthie24]

@Ema- Thanks for the welcome and thanks for the info!

I got single numbers back on the viral tests. I saw an ME/CFS specialist though so I'm guessing they were the tests that they felt were appropriate. The doc was the one who used the term "sky high" levels so I'm not sure what the relative strength of the results was.

My IgG subclass 3 was low, and subclass 1 was very low end of normal range. The doc pointed those out as being concerning but didn't really address anything to do about them. My other immune component tests were ok, except for the NK tests. CD3, 4, 8, 19, B cells were all ok.

Thanks for the tip on Inosine. I'm going to have to start a list of things to research and to ask my local doc about trying/tests to run, etc

Seems like the ultimate irony that you get a disease with cognitive issues and then you have to do most of the research yourself just to get a possible diagnosis, find a reputable doctor, research possible treatments..... The ultimate joke played by the universe?

I'm just so grateful for sites like this and people like you and Heaps who are willing to take the time to share your experience.

 

[heapsreal]

As for sinuses i have found i need to stay on doxycycline all the time but it has settled with immunovir, prior to this i was on doxy 100mg twice a day and sometimes needing to take 200mg twice a day to get on top of it. currently im just using 100mg a day and looking at stopping it soon. I have been on doxy for this for over 12 months, i use either nystatin or sacchromyce bouldarri to prevent any fungal issues with long term antibiotics. occassionally i would use/add another antibiotic (zinnet)for a week or 2 when it was bad. constant saline flushing has helped as well.

Sometimes i think with testing viral titres etc wont always give u an indication of how bad the infection is, sometimes i think just knowing u have the viruses is the only useful thing and the only real way to know these viruses are a problem is to treat them and see if u improve. its really an educated guess or stab in the dark i think. cd t cells if high can give u an idea your fighting something and if low then could mean your immune system is tiring. even though i have improved alot my testing shows my immune system is still fighting something, this is why i think i will always been on some type of antiviral and or immune mod. but thats me.

Cycloferon is well priced compared to other immune mods, whats scares some people off is that it comes in boxed with russian writing all over it but the russians have been using these meds since the 1960s with no serious side effects.
http://www.drugsfort.com/skin-problems/cycloferon.html when i use it i take 2 pills on mon/wed/fri on an empty stomach and probably smart to only use for say 2 months with a month off or i have been alternating it with immunovir so im always on some type of immune mod.

just reread your post about the irony of having cognitive issues and then having to do your own research. The only positive for me from insomnia is that i would spend some of the time researching until my brain pooped out. i did find i had to reread things many times over and would save articles and reread at a later date. i probably had to reread things 4 or 5 times more then i would have pre cfs but the thought of feeling like this all the time drove me to keep researching when i could. it would be nice to walk into a doctor who would run the right tests and diagnose one with cfs and then prescribe the right treatments without us having to personally do our own research, one day maybe.

cheers!!!