My chronically elevated EBV antibodies

[Gingergrrl]

He told me that since I don't have the mast cell hallmark symptom of hives, I can't get a referral to a mast cell specialist.

That is so aggravating and I had MCAS reactions so severe in 2015 that family and friends have recently told me that they were scared that I might die (back at that time, not now). And yet I only had one incident of hives from a yellow food dye. None of my anaphylaxis episodes involved hives.

 

[Wonkmonk]

I think Dr Lerner's theory makes no scientific sense and is supported by no data.

[...]

Viral studies have shown no increase in evidence of herpes viruses in CFS patients at all. If there was a link at least some slight difference ought to be apparent.

But then how do you explain the good results Dr Lerner has had with herpes virus specific antivirals for a certain subset of patients. Dr Montoya also reports some good results. It seems to be working for some patients, possibly and hopefully including me.

 

[pcmenten]

@bspg That does NOT look normal!!! The IgM titers should have dropped long ago. The fact that they are still elevated seems like a big red flag.

 

[JES]

But then how do you explain the good results Dr Lerner has had with herpes virus specific antivirals for a certain subset of patients. Dr Montoya also reports some good results. It seems to be working for some patients, possibly and hopefully including me.

Regarding the results of Lerner, his patients improved yes, but the results were not that impressive. Quoting from his 2010 paper (summary):

Of the 106 patients in Group A, 79 (74.5%) had EIPS increases of equal to or greater than 1.0. (In other words, 27 Group A patients had less than a 1.0 EIPS treatment response.) For these 79 “responders,” the average EIPS baseline was approximately 4.36 with the two-year average EIPS improved to 6.35 (53 responders remaining). “The delta [change] for responders was 2.54 (P<0.0001). EIPS improved in both single and multiple herpes virus CFS patients.” Twenty-one Group A single and multiple herpes virus patients had EIPS values 7-9.

The EIPS score of 6.53 corresponds to: 6 - “Daily naps in bed, may maintain a 40-hour sedentary work week, plus light, limited housekeeping and/or social activities.”

By contrast, results from the Rituximab phase 2 study indicated that one third recovered completely, one third improved and one third didn't respond. So in the Rituximab study, the "recovered" group would presumably have an EIPS score of 9 or 10. Furthermore, the Lerner study was not controlled, so we don't know how many patients would have improved anyway without the drug.

Don't get me wrong, if I had high EBV levels I would definitely trial something like valacyclovir or famcyclovir (I did trial valacyclovir anyway). These drugs are even sold without prescription in my country, they are quite safe unless you up the dosage a lot. But don't expect miracles and the improvement may take months or over a year.

 

[Wonkmonk]

Thanks @JES, this is correct, but please note that going from EIPS 4.3 to 6.5 is a huge improvement. It means that people who were unable to work and out of bed for just 6-8 hours a day before treatment can now have a 40-hour office job plus manage their household and have limited social activity. That's a level of functioning many of us (including me) are dreaming about.

And as you say, the antivirals he recommends are quite safe, whereas on the other hand, Rituximab often has severe and sometimes permanent side effects. Rituximab treatment is also over several months. I'm not arguing against Rituximab, for many it might be an option. But - and I think here we agree - if a patient has elevated herpes virus titers and may fall in the subset Dr Lerner has treated, they should definitely give antivirals a try.

 

[Learner1]

@Learner1 Oh, and what I also find surprising is that if I understand correctly you are using Rifampicin and ValGANcyclovir at the same time. I only know they are both liver toxic so I thought that should be avoided.

Dr Lerner recomments ValAcyclovir, which has proven efficacy against EBV and is not liver toxic. He usese ValGANcyclovir only for CMV and HHV6 and he does the antibiotics first and only then starts with antivirals.

Dr. Lerner is not my doctor. I'm being cared for by 2 excellent doctors, one of whom is a CFS specialist.

My 2 biggest problems are chlamydia pneumoniae and EBV, with HHV6 in third place. They are bad bugs and harming me. I'm being closely monitored, with biweekly liver tests, and I'm getting significant liver support, in IV, injectible, and oral form.

I started on valacyclovir, but it isn't as effective for the combo of vital infections I have, and my prescription insurance would only pay for 1/4 of the daily dose I needed.

Since valganciclovir is the more effective drug and my insurance will happily pay for it, it made sense to be on it.

I'd already been on oral antibiotics, they just messed up my gut and didn't do much to the infection which is entrenched deep in my tissues. So, after a 2 1/2 month battle, my insurance finally approved IV antibiotics.

I started with doxycycline, and the plan is to rotate in the azithro and rifampin over time so we attack the different life cycle phases of the chlamydia.

8 years ago, I swore I'd never take another antibiotic unless it was a life or death matter, and here I am doing this. But, I've tried everything else and it just wasn't enough.

I am doing better 6 weeks into the antivirals, so I'll have to see how far this strategy takes me.

 

[Gingergrrl]

And as you say, the antivirals he recommends are quite safe, whereas on the other hand, Rituximab often has severe and sometimes permanent side effects. Rituximab treatment is also over several months. I'm not arguing against Rituximab, for many it might be an option. But - and I think here we agree - if a patient has elevated herpes virus titers and may fall in the subset Dr Lerner has treated, they should definitely give antivirals a try.

I have no agenda and am following this with great interest b/c I had severe mono/EBV in March/April 2012 and then either a second virus, or a re-activation of EBV, in Jan 2013. I tried the anti-viral route (Famvir and briefly Valcyte) in 2014 but it did not help me. I believe I was in the "viral sub-group" (or whatever it might ultimately be called) and then when there was no virus left to attack, my body started attacking itself and I shifted into severe autoimmunity (where I am now).

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). I don't feel that one course of treatment is "better" or "more correct" vs. the other. I think it just depends on the individual patient's lab results which direction to proceed.

 

[Learner1]

Can you give Pubmed references for those studies? I have been following the research into ME/CFS closely and am not aware of anything that has changed the situation.

You're kidding, right?

I couldn't even FIND an MD in a major American city who could spell ME/CFS, much less treat it.

The one I found who'd see me without dismissing me or yelling at me argued with me about my suppressed TSH (my pituitary isn't working), told me to eat more carbohydrates when he found ketones in my labs, and handed me an "Up to Date" publication recommending cognitive behavioral therapy for CFS. He kept explaining that "we allopathic doctors don't do ...".

The infectious disease specialist couldn't read by labs properly, a rheumatologist argued again about my TSH before firing me, a liver doctor told me to quit all of my supplements and have a colonoscopy, and a hematologist told me I was crazy because I have iron in my brain causing all of my symptoms and dismissed my labs and research articles I brought him.

PubMed has ample research published between 2004 and 2017. Some of it is mighty useful. And much has been discussed here, like auto antibodies, the Rituximab trials, treatments for cpn, EBV, and other infections, non-T4 management of thyroid, metabalomics of CFS, mitochondria, heavy metal toxicity, the microbiome and CFS, etc.

The doctors who are helping me stay up with this research and are integrating it into my treatment, unlike those mentioned above who were close minded and old fashioned. This newer science may not yet be the national standard of care anywhere, but we all could be dead if we wait for perfection before being able to try treaments based on these exciting developments.

 

[Wonkmonk]

@Learner1 Correct, if HHV6 is involved, you need Valganciclovir.

 

[Wonkmonk]

I will be doing my first infusion of Rituximab in eight days.

I so much hope it will work for you !!

 

[Jonathan Edwards]

You're kidding, right?

No I am not kidding. I was asking a straight question because I try to keep up with the research. You indicated that interpretation of EBV tests had changed and I am not aware of anything published on that of significance. You have not given me any citations so I presume there are none.

I do not see how doctors can work new information into clinical management of their patients on a legitimate scientific basis if that information is not there.

I am simply wary of poor quality information spread by cowboy physicians being passed around as if it had some scientific basis.

 

[herpesbaby]

@heapsreal please kindly share your experience about valtrex. Did you take it long term? After stopping, did you get withdrawals? Is it true that Lerner's protocol only gives temporary results?

 

[Wonkmonk]

Dr Lerner has produced several studies (including placebo-controlled ones) that substantiate his theory. 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.

 

[Wonkmonk]

@herpesbaby I have been taking Valtrex (Valacyclovir) January through June, 6 grams a day as proposed by Dr Lerner. Most of my symptoms have markedly improved: Orthostatic intolerance, exertion intolerance, joint pain, fatigue, weakness, heat intolerance. I went from EIPS 1 to I would say EIPS 4.5 today, which sadly still means I can't work.

No symptom has disappeared completely, but almost all have improved, except headaches which I think are worse than they were.

That said, 5 months isn't nearly enough for full benefits to show. According to Dr Lerner, substantive recovery is expected to start after 6 months. Recommended minimum treatment duration is 1 year. Expected improvement for those who respond to treatment is in most cases to EIPS 6-7 which means patients can work 40-hour office jobs, manage their households, have some social activities and perhaps do a tiny bit of sports (EIPS 10 is 100% healthy).

In June, I had to stop Valacyclovir because my kidney test results deteriorated. They fully recovered after 10 days. In the 3 weeks when I didn't take antivirals, my symptoms clearly got worse again, which indicates to me that - at this time, 5 months of treatment - results are not permanent.

In July, I switched to Brivudine, which is also a potent anti-herpes drug. It doesn't affect the kidneys but is more problematic for the liver if taken long term. I hope I'll be able to switch back to Valacyclovir in a few weeks.

Dr Lerner says, of thoseresponders who complete the full course of treatment about 50% have permanent improvement and can stop Valacyclovir altogether. 30% can reduce dose but still have to take it and 20% need to continue taking high dose Valacyclovir, which he says is usually well-tolerated even over several years.

Dr Lerner had CFS himself at age 58 and treated himself with Valtrex over 5 years. He recovered to a degree that he could run his practice, do research and attend scientific conferences, which I think is a pretty good result.

 

[edawg81]

Yes, they are 'elevated'. The 20% have high levels - which is the same as elevated in this context. High antibody levels are not a useful sign of continuing active infection. We all carry EBV but there is little or no evidence it causes any problems.

My account is totally anecdotal, so take it with a grain of salt, but I was lucky enough to have EBV tested several times before and during my onset of ME/CFS. Before and during my onset EBV VCA/EBNA IGG only were elevated, 3 weeks after my ME/CFS onset my EA became positive. Since then for the last year my EA has stayed high, I believe this has some connection to my current condition. I'm sure once science figure out the underlying pathology of the MECFS it will all makes sense, but it definitely isn't a coincidence IMO. That said you can not ignore the accounts of some patients improving on antivirals even though were PCR negative, sadly there is no consistent response (including my own), so there must be subtypes, more diagnostic testing and research is needed.

 

[Wonkmonk]

I think CFS/ME isn't one condition. It is several distinct types of disease that all happen to share similar symptoms and the fact that no cause has yet been found.

It may well be the case that in the future, we have a condition called "Herpes virus-induced CFS" and and "Autoimmune CFS" etc. whose cause is very different (viral infection vs autoantibodies) and that are also treated very differently, e.g. antivirals vs. Rituximab.

The problem right now might be that patients are all lumped in the same box (CFS/ME) and everyone is searching for cause and cure that applies to everyone. This may not be possible because, as Dr Lerners research suggests, one particular approach may only work for a very specific subset of patients.

 

[Gingergrrl]

It may well be the case that in the future, we have a condition called "Herpes virus-induced CFS" and and "Autoimmune CFS" etc. whose cause is very different (viral infection vs autoantibodies) and that are also treated very differently, e.g. antivirals vs. Rituximab.

I totally agree with this and I believe that at some point in the future (not in my lifetime) that science will become even more specific and be able to identify that someone has a "calcium channelopathy" or "autoimmune encephalitis" etc without them having to see 20+ doctors and years of being undiagnosed. So the subgroups will actually be completely different diseases entirely (but this is very far away IMO).

 

[bspg]

without them having to see 20+ doctors and years of being undiagnosed

This.

 

[heapsreal]

@heapsreal please kindly share your experience about valtrex. Did you take it long term? After stopping, did you get withdrawals? Is it true that Lerner's protocol only gives temporary results?

I use famvir and continue to take it. Started it in 2009. I have found if i stop it i get mono type symptoms and lymphocytes shoot up indicating some type of infection. The last 2 years if i have stopped famvir i have had a shingles outbreak. Ive had several outbreaks while on famvir but not as severe and as long as i continue on famvir i seem to be having less issues with shingles.

I know of several cfsers in similar situation with avs. Doesnt seem to be a cure but improves function etc.

 

[herpesbaby]

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