My chronically elevated EBV antibodies

[Wonkmonk]

@heapsreal What dose are you taking?

 

[ljimbo423]

It is hard to deny that antivirals work for a subset of patients. How big that subset is, of course, is unknown. But there is substantial evidence that shows it exists and antivirals are a promising treatment option for these patients.

I agree that antivirals help some, sometimes significantly, I am on board with that statement. I have read of too many people improving from antiviral treatment to not believe it helps some.

If what Robert Naviaux says is true about many patients getting symptom relief although there IgG antibodies are still high, that would suggest the antivirals are working in ways other than lowering a viral load. Here is a study that says there was improvement with antiviral treatment. However, there was no change in viral IgG antibody titers-

Viral IgG antibody titers did not differ between arms.

link

What Robert Naviaux and this study say are the same about unchanged viral titers. It doesn't make sense to me, to use high viral titers to validate treatment, when treatment response doesn't depend on lower titer levels.

Although there was a shift towards TH1 profile. I think an imbalanced immune system is causing a significant amount of symptoms in cfs/me and the shift towards a TH1 immunity is probably what caused improvements in this study.

 

[heapsreal]

@heapsreal Thank you for responding. One more question, sorry: Do you monitor you Igg levels? Do titres change or constantly high?

No they wont test titre levels in australia. I did get one cmv titre test which i must have slipped through the system, going by lerners scales my cmv igg was just high but i had been on antivirals for a couple months prior, from memory. So ive mostly thought cmv was an issue and still think it probably plays a part.

But shingles outbreaks which started in 2015 and continued but slowed considerably as well as severity.

I did try to get more titre levels done but got told because i dont have hiv they wont do it. But my thoughts are that they probably arent accurate anyway.

I mostly go off lymphocyte subset tests which basically have said im fighting some infection but over time they've mostly improved, although shot up during shingles infections.

Last i got tested i had moderate neutropenia and had these for a few years and this also can indicate some type of ongoing infection, usually bacterial but do drop from cmv etc.

Also had sevetal nk function tests done that say im quite low, nk cells are the part of our immunity to fight viruses and cancer cells, written in every modern anatomy and physiology text book but some reason its denied as being an issue in cfsme.

Ive improved with lots of antivirals, antibiotics and antiretrovirals. After stopping treatments it doesnt take long to start feeling crappy quite quick, so for me i think im in a chronic infection sub group and have improved with treatment.

 

[heapsreal]

@heapsreal What dose are you taking?

I have mostly been on famvir 250mg twice a day but since the shingles started and continuing outbreaks ive been on 500mg twice a day.

 

[herpesbaby]

@heapsreal thank you for response

 

[Wonkmonk]

@heapsreal Is your main goal with Famvir just to suppress the Shingles outbreaks or to treat CFS? If used to treat CFS, the doctors who pioneered this treatment would probably say that 500mg twice a day is way too low to have a positive effect. E.g., Dr Lerner recommends depending on weight 1,000-1,500 mg four times a day (= 4-6 grams a day).

 

[heapsreal]

@heapsreal Is your main goal with Famvir just to suppress the Shingles outbreaks or to treat CFS? If used to treat CFS, the doctors who pioneered this treatment would probably say that 500mg twice a day is way too low to have a positive effect. E.g., Dr Lerner recommends depending on weight 1,000-1,500 mg four times a day (= 4-6 grams a day).

Its to treat both. Guess work on which virus but famvir has a broad action so can cover cmv and vzv. When i started on famvir 250mg twice a day i saw improvements and labs indicated this as total lymphocytes and different t cell subsets came down. I moved to 500mg bid because of cfs getting worse but also the reoccurring shingles and its helped.

I understand dr lerner used very high doses but it starts getting out of my price league to use these doses chronically but i do lift the doses on occassions for short periods.

The half life of most antivirals is short approx 3 to 4 hrs and this is the same with famvir but i think because famvir has an 18hr intracellular half life that the 4 to 5 times a day dosing isnt required. Intracellular drug life of famvir isnt mention much but it must be a plus for the drug.

Suppression treatment with antivirals for herpes 2, vzv i have seen studies indicating once to twice a day dosing, even a study on a one off 1500mg dose for genital herpes is effective. So i think theres more to the drugs effectiveness than its half life.

 

[JES]

AFAIK taking these antivirals at the dosage of Lerner's recommendations requires regular blood monitoring for kidney status etc., there was a recent post here about someone developing symptoms of renal failure from this type of dosage (edit: source).

 

[Wonkmonk]

Oh yes, methinks I know that post you're talking about

I switched to Brivudine, which doesn't affect the kidneys, and tests are ok for now. Hope I can switch back to Vala over time.

 

[BadBadBear]

I will be doing my first infusion of Rituximab in eight days. You are correct that Ritux can have severe side effects but Valcyte can as well and it gave me akathisia (temporary) and I was required to do weekly safety labs at that time. Rituximab is two infusions total and then maintenance infusions at the 3 month, 6 month, etc, mark (depending on each person's situation).

@Gingergrrl, are you posting your Ritux trial experience somewhere? I'd like to follow how it goes. I read through your initial thread about antivirals from 2014 (?IIRC) and wondered how it had turned out for you. Finally found the answer to that question in this thread. Hope the Ritux goes well.

I am ~25 days into a Famvir trial, and struggling with side effects. My primary infection seems to be unrelenting chronic EBV.

 

[Learner1]

@Gingergrrl, are you posting your Ritux trial experience somewhere? I'd like to follow how it goes. I read through your initial thread about antivirals from 2014 (?IIRC) and wondered how it had turned out for you. Finally found the answer to that question in this thread. Hope the Ritux goes well.

You'll want this thread:

http://forums.phoenixrising.me/inde...roved-for-rituximab.52076/page-28#post-928024

I am ~25 days into a Famvir trial, and struggling with side effects. My primary infection seems to be unrelenting chronic EBV.

I've been on valganciclovir for 4 months and it seems to be effective. Also zinc, lots of vitamins A and C, and artesunate/artemisinin.

Edited to add -

https://www.ncbi.nlm.nih.gov/pubmed/23959519

 

[Gingergrrl]

@Gingergrrl, are you posting your Ritux trial experience somewhere?

You'll want this thread:
http://forums.phoenixrising.me/inde...roved-for-rituximab.52076/page-28#post-928024

Hi @BadBadBear I am just seeing this now and was going to link you to my Rituximab thread but @Learner1 already did it... thanks, Learner!