Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

[hunter1899]

Here are my latest lab results. While this lab didn't test my EBV IGG for some reason, my EBV IGG was >750 in my labs a month ago. My main symptoms is some fatigue, but mostly my eyelids feel hot and thick, my forehead is hot and tingly and I have a pressure around my eyes and forehead. I tested positive for three mold toxins and tested positive for EBV in Februdary 2020, but my IGM has been negative since April. Would love to hear some opinions on treatment. Would Valcyte or Valtrex work better for me? I know neither of these are a sure bet, but I do see many people who've been helped.

Really appreciate it.

 

[Pyrrhus]

Here are my latest lab results. While this lab didn't test my EBV IGG for some reason, my EBV IGG was >750 in my labs a month ago. My main symptoms is some fatigue, but mostly my eyelids feel hot and thick, my forehead is hot and tingly and I have a pressure around my eyes and forehead. I tested positive for three mold toxins and tested positive for EBV in Februdary 2020, but my IGM has been negative since April. Would love to hear some opinions on treatment. Would Valcyte or Valtrex work better for me? I know neither of these are a sure bet, but I do see many people who've been helped.

Really appreciate it.

Well, you probably have EBV, CMV, and HHV6, but I'm not sure I see strong indications of a reactivation of any of these viruses. So those labs don't seem to yield much helpful knowledge.

What did strike me as noticeable were the elevated liver enzymes, including GGT. I hope your doctor discussed these with you...

 

[hunter1899]

Well, you probably have EBV, CMV, and HHV6, but I'm not sure I see strong indications of a reactivation of any of these viruses. So those labs don't seem to yield much helpful knowledge.

What did strike me as noticeable were the elevated liver enzymes, including GGT. I hope your doctor discussed these with you...

He did. They were much much higher during my mono and are slowly coming down.

I want my doctor to put me on Lerner and Montoya’s protocol of high dose antivirals vitals to get rid of any remnants of these viruses. Would doing that lower my IGG?

 

[Pyrrhus]

I want my doctor to put me on Lerner and Montoya’s protocol of high dose antivirals vitals to get rid of any remnants of these viruses. Would doing that lower my IGG?

Possibly, but there's really no way to know for sure how you will react or how much benefit you might see. Once you have a herpesvirus like EBV, CMV, or HHV6, you will probably have it for life in a latent state, but not necessarily in a reactivated state. (These viruses only cause problems in a reactivated state.)

Hope this helps.

 

[hunter1899]

Possibly, but there's really no way to know for sure how you will react or how much benefit you might see. Once you have a herpesvirus like EBV, CMV, or HHV6, you will probably have it for life in a latent state, but not necessarily in a reactivated state. (These viruses only cause problems in a reactivated state.)

Hope this helps.

It does and I appreciate the time you’re taking to talk with me about this. It’s just so confusing. Some fold say the viruses only cause issues in reactivated state and some (Montoya I think) say that even not reactivated they can contribute to you feeling like crap. And then there’s the mold variable too. So dang confusing.

 

[gbells]

In his patent document he states that " it is further hypothesized that chronic fatigue syndrome is essentially cardiac in origin, and the this cardiac basis unlocks the key to the disorder",

My ECG changed after getting mononucleosis in 2008 showing a ST segment elevation (later contracted HHV6 and coxsackievirus, history of varicella zoster), I developed systemic lupus erythematosus in 2015 and then developed pericarditis. Immunotherapy is reducing the amount of colchicine dose I need to control the pericarditis. I'll ask for a follow up ECG if it resolves to see if the elevation goes back to normal due to the immunotherapy.

Lehrner published a paper on the ECG changes found in ME patients. I think it shows inflammation of the myocardium due to chronic viral infection which would be hyperexcitable.

In addition to enteroviruses and adenoviruses, recent investigations have shown that genomes of parvovirus B19, human herpes virus type 6, hepatitis C and Epstein-Barr virus are detected even more frequently in the myocardium of patients presenting with acute myocarditis [29, 33].

Virus-caused impairment of systolic and diastolic LV function [64] are responsible for heart failure symptoms. Some patients may present with an acute coronary syndrome, including abrupt onset of angina, combined with ECG changes (ST-elevation or T-wave inversions) and increase of heart specific enzymes such as troponin or creatinin kinase [33],

The prognostic relevance of enteroviral persistence was identified early in the study by Why et al. [67]. This study demonstrated that the mortality of patients with chronic impairment of LV function was significantly increased in the subgroup of patients with EMB proven diagnosis of myocardial persistence of enteroviral genome compared to virus negative patients (mortality: 25% versus 4%) over a mean observation period of 25 months (range, 11 to 50 months) [67]. In addition, a recent trial from Frustraci et al. showed clearly that in patients with viral persistence undergoing immunosuppressive therapy, the mortality was significantly increased [20]. On the other hand, the therapy concept of immunosuppression in patients with immunohistologically proven myocardial inflammation and exclusion of viral persistence diagnosed as DCMi demonstrated a significant improvement of LV dysfunction due to this causal EMB-based treatment strategy [69, 70].

-Pauschinger M, Noutsias M, Lassner D, Schultheiss HP, Kuehl U. Inflammation, ECG changes and pericardial effusion: whom to biopsy in suspected myocarditis?. Clin Res Cardiol. 2006;95(11):569-583. doi:10.1007/s00392-006-0427-2

 

[sometexan84]

Got my EBV labs back, and feel extremely disappointed.....

My EBV titers over time w/ treatment

EBV EA (Early Antigen) IgG: 25.4

My Valtrex dosage

Been on Valtrex 6+ months (since 5/5/20) and thought for SURE my latest labs would have shown more progress.

Important to note that I've been doing only HALF of Dr Lerner's protocol. I'm on 500mg 4x/day. Considering my weight, my dosage is actually LESS than half of what Dr Lerner prescribed (1g 4x/day, possibly more based on weight).

Also, I started on 500mg 3x/day (instead of 4x/day), and admit that periodically I still take 3 instead of 4 a day. So when all is said and done, I probably have averaged the following dose....

1,750mg/day (my avg dosage for past 6 months)

If I did the math right, this means (at my current dose) I won't get into normal range (<9.0) for 29 more months.

Needless to say, I'm requesting an increase from my doc. I'd like to start doing 4g/day (1g x 4).

 

[Cipher]

@hunter1899 Your HHV-6 (IFA) IgG titer is above 1:160 which according to the HHV-6 Foundation is above the median for healthy controls, which could indicate that an active HHV-6 infection is present.

IFA IgG test
If the titer is highly elevated relative to healthy controls, it means that the patient may have had a recent infection or has a current chronic/smoldering infection. Quest Diagnostics and ARUP Laboratories are two of the only known laboratories in the USA to perform testing by IFA methodology. Their labs have a median antibody titer between 1:80 and 1:160 for controls. Other labs have much lower control titers.

IgM test
The absence of an IgM antibody does not mean you do not have a active infection. Chronic infections in various tissues can persist with no evidence of IgM.

Your CMV IgG antibody titer is 13 times the negative reference titer. According to Dr. Lerner; "A diagnosis of cytomegalovirus(CMV) infection is made with an elevated CMV IgG titer. The IgM titer for CMV is inaccurate and insensitive. The higher the CMV IgG titer, the greater the viral load."

Unfortunately, Dr. Lerner didn't specify what exact titer is considered elevated.

While this lab didn't test my EBV IGG for some reason, my EBV IGG was >750 in my labs a month ago.

I don't understand, your lab says Epstein-Barr EA IgG is 6.4 U/ML. What test showed >750?

 

[livinglighter]

So I have come back to post on this forum after a lengthy sabbatical. I was just curious for the most part as to what changes may have happened. I was drawn to this post as my son saw Dr Lerner during the last few years of his life and was treated with Valtrex as a secondary medication with a primary treatment of Cidofovir infusions (6 over 12 weeks). He did not quite meet the 80% improvement, but he did make enough of an improvement that he was able to pretty much fully recover over the next 3 years. He is now 7 years out and doing well. He has not had any further tests done, but I did talk at one time of taking him to the Stanford Lab to get his blood looked at.

So being a Physical Therapist myself (I'm not a proponent of dogmatic CBT and GET) and a student of Neuroscience, I am more convinced now than I was 7 years ago that the impact of the antiviral had more to do with the turning off of his over-reactive neuro-protective mechanisms that were shutting/breaking down his mitochondria and creating otherwise general havoc on his system. He displayed all the features of an upregulated/hypervigilant system with significant neuro-inflammatory and neuro-immune responses. Could it be that there was a smoldering virus, yes. But I am not confident that is enough to create the issues many including my son have faced with this disease.

The only system in the body capable of creating such devastating systemic issues in my thinking is the nervous system.... if it is in an "over-protective" mode. Why would antivirals impact this? Because they are also very powerful neural stimulants. They have been now been successfully used in the treatment of Post-Concussive syndrome (arguably a form of ME/CFS) with the use of Amantadine. So perhaps it is more accurate to say there are many different forms of ME/CFS including those associated with viral onset, fibromyalgia, PTSD, Post-concussive syndrome, Lyme Disease and more, but they all share similar Neuro-protective, Neuro-immune, Neuro-endocrine and Neuro-inflammatory components.

Lastly, I want to say that this has nothing to do with psychology causing this just because I am proposing Neuroscience as the primary source. Conscious resources make up less than 10% of the nervous system. So 90% (the part where all of these Neuro-protective mechanisms reside) is not under our direct control. Not to mention that the human nervous system is infinitely more complex than any other structure in the known universe. Also making it supremely powerful when it comes to body functions (thus the use of brain dead as the definition of end of life). So although CBT may help some, it is surely not a cure.

Sorry to be so wordy and none of this discounts treatments that others have found successful. Just my view from where I have lived.

Hi @Mohawk1995

Thanks for coming back to the forum to post. I've been suffering from this illness for around 5/6 years now. I've been slowly reading through all the treatment information on the forum and your son's recovery with antivirals and the explanation why you think it was effective sounds very possible to me.

Without prior knowledge I attended one of the UK dogmatic CBT and GET fatigue clinics, one headed by an immunologist active in clinical research (not sure what/who the research was intended for as I can't see anything published). I was told about the immunologists research indicating the nervous system being compromised, the body being in a upregulated/hypervigilant state and widespread inflammatory responses. I also required a lot of illness supporting evidence to demonstrate my impaired functioning is a result of a health condition. I recently decided to go back over all of my clinic documents and I can see my impaired physiological functioning has been attributed to an immune hyper response. I was also recommended to take magnesium which regulates the nervous system.

 

[Mohawk1995]

I recently decided to go back over all of my clinic documents and I can see my impaired physiological functioning has been attributed to an immune hyper response.

The fact that this is becoming more recognized and that treatments that would be harmful are being disputed has me thinking this even more strongly. I have learned a great deal of how the body functions and responds to the environment we live in. Honestly from what I know, this is the only explanation that explains what ME/CFS sufferers experience. It is the only explanation in my opinion as to why my son went into anaphylaxis while going through routine allergy testing. Fortunately he survived! The key now is to understand how we can "downregulate" the system and restore "normal" function or at least enhance it. We are getting closer to that and hopefully farther away from saying it is a "thought" issue or can be cured by GET and CBT. Those strategies will only help (and they did for my son) when we can change the underlying physiological dysfunction.

 

[vision blue]

I'm looking for the entry frrom the person that said they can't tolerate Valtrex to direct it to that person, but can't seem to find it. Intersted to know if you were able to tolerate valcyte and any side effects you got from it? and in what way can't you tolerate valtrex? I can't either (terrible reflux and esophagous problems and dysphagia) but really need an antiviral.

does valcyte work on other herpes viruses too? quick look up and i couydnl't find it, but it seems to damn toxic.

need to know if i should try to fight for this AND if i go this route i likely should not change my insurance to a cheaper one as i was planning to do.

not sure if this is an off topic question but if anyone feels like answering, can ebv get into nerves and cause nerve pain and red spots?

thanks.

 

[Pyrrhus]

does valcyte work on other herpes viruses too?

According to a 2019 review, Valtrex should work for HSV and VZV, while Valcyte should work for HSV, VZV, EBV, and CMV. However, this was mainly based on in vitro studies.

Reference:
https://www.sciencedirect.com/science/article/pii/S0166354218306570?via=ihub

 

[gbells]

According to a 2019 review, Valtrex should work for HSV and VZV, while Valcyte should work for HSV, VZV, EBV, and CMV. However, this was mainly based on in vitro studies.

Reference:
https://www.sciencedirect.com/science/article/pii/S0166354218306570?via=ihub

Should work to do what? All is does is stop replication by inhibiting Thimidine Kinase during S phase. Any cell growth inhibitor supplement does that (i.e. oxymatrine) and is a lot cheaper. You can achieve the same effect by cycling a cell growth inhibitor 2 days on, 2 days off since replication time for these viruses is three days. This should slow progression but not improve ME symptoms at the expense of no healing during the on days.

 

[jstefl]

@vision blue

I am one person that has taken Valcyte but was not able to tolerate Valtrex. I took Valcyte for 10 months with absolutely no problems and was tested regularly during that time. I took it for its effect on HHV-6 specifically. If you look at my older posts I have written about this extensively.

After finishing the Valcyte I tried Valtrex but was unable to continue. While the Valcyte helped many of my problems, Valtrex didn't seem to do anything positive for me. If you go to https://hhv-6foundation.org there is a lot of information there.

 

[Learner1]

Here are my latest lab results. While this lab didn't test my EBV IGG for some reason, my EBV IGG was >750 in my labs a month ago. My main symptoms is some fatigue, but mostly my eyelids feel hot and thick, my forehead is hot and tingly and I have a pressure around my eyes and forehead. I tested positive for three mold toxins and tested positive for EBV in Februdary 2020, but my IGM has been negative since April. Would love to hear some opinions on treatment. Would Valcyte or Valtrex work better for me? I know neither of these are a sure bet, but I do see many people who've been helped.

Really appreciate it.

Sorry to be late in weighing in here, but a high VCA IgG, especially very high, can be an ongoing infection. You might also do a PCR test.

With multiple herpes family infections, Valcyte would be the preferred drug. It has gotten a bad reputation for being hard for n kidneys and liver, but that's because it has been mostly used in patients who've had advanced cancer or AIDS, who are more delicate. I was on Valcyte for CMV, EBV, HHV6, and HSV2 for 20 months and my liver enzymes and kidney function didn't change much going on it or off it. What did change were my symptoms - my brain fog cleared within 30 days and fatigue gradually improved.

Could it be your liver is reacting to the infections anyway??

At any rate, it's well worth getting these viruses treated - you might want to look into Bhupesh Prusty's papers where they found that herpes family viruses don't have to be fully active to be causing mitochondrial fragmentation impacting energy production.

https://solvecfs.org/dr-bhupesh-prusty/

(These viruses only cause problems in a reactivated state.)

This is not true. See Dr. Prusty's papers.

does valcyte work on other herpes viruses too? quick look up and i couydnl't find it, but it seems to damn toxic.

Yes it does work with multiple herpes viruses. See attached. My experience was that acyclovir, which I'd already been on for HSV2, did nothing for my other herpes family viruses. My insurance wouldn't approve valacyclovir at the 3g my doctor wanted me on, but they happily approved 1.8g a day of valganciclovir.

See my comments above regarding toxicity. Valacyclovir can cause kidney toxicity, too. The only other negative is that it may affect fertility, but that may or may not be important for different patients.

can ebv get into nerves and cause nerve pain and red spots?

Yes, according to the CDC, EBV infection can affect a person's brain, spinal cord, and nerves. It can also triggered all kinds of autoimmunity, with many kinds of autoimmune antibodies that attack the nerves. More incentive to get treated as soon as possible..

After finishing the Valcyte I tried Valtrex but was unable to continue. While the Valcyte helped many of my problems, Valtrex didn't seem to do anything positive for me.

Not sure why you'd want to use Valtrex after Valcyte, which should have already done the job??

 

[gbells]

Sorry to be late in weighing in here, but a high VCA IgG, especially very high, can be an ongoing infection. You might also do a PCR test.

Why bother since it doesn't change the treatment. High IgG for EBV already shows there was an exposure.

 

[jstefl]

Not sure why you'd want to use Valtrex after Valcyte, which should have already done the job??


I did this back in 2008. I had no idea of how long to take the Valcyte and neither did my doctor. It was his decision to stop after 10 months and I had no choice. I would have continued for much longer were it up to me. I knew that Valcyte didn't do much for EBV, and I could buy Valtrex from a foreign pharmacy without a prescription, so I thought I would try it. I actually noticed that the Valtrex stirred things up a bit, I developed cold sores for the first time in many years, but not much else happened. I was never able to get to any where near Dr. Lerner's 4 Grams a day dosage, so I gave up soon after I started.

My whole point is that I was able to easily tolerate Valcyte but not Valtrex.

 

[vision blue]

@gbells
"...since replication time for these viruses is three days. ". Intersting that you say that. I didn't know that but have always noted that for 3 days before i get a recurence i feel GOOD - better than usual. I have figured the virus is replicating and has turned off my immune system in some way, something herpes viruses can do to some extent for a while.

 

[vision blue]

@jstefl
Thanks. Can you elaborate on "was not able to tolerate Valtrex". What happened to you when on valtrex that coudln't tolerate? (I'm assuming you don't just mean was not effective). .

Edit: i just saw a later post where you said the valtrex caused resurgence of cold sores. Please add more intolerances if there was anythign else. Thanks.

 

[vision blue]

@Learner1 Thanks for all your replies
"Yes, according to the CDC, EBV infection can affect a person's brain, spinal cord, and nerves. It can also triggered all kinds of autoimmunity, with many kinds of autoimmune antibodies that attack the nerves. More incentive to get treated as soon as possible.. ".

I really should retest for EBV to make sure what plagues me really is hsv1 and not EBV. years ago, in the beginning of the unexplained lasting fatigue i got tested for EBV and there was no evidence of chronic or reactivated infection, just a past one, and really have not revisitied since. I dont' have high monocytes ever; do have low or borderline low lympocytes. I wonder how closely EBV cna mimic hsv1 in terms of appearance (though its not perfect for hsv1 anyway) and nerve pain.

just thinking out loud- wondering if i'd be able to tolerate valcyte given the awful reactions to acyclovir and valacyclovir. have to read i guess on how valcyte works. my bad reactions to those antivirals were delayed by one day making me think its not that it was an irritant to GI track but its the actual mechasim of action. has been suggested that could suggest the virus is also in GI track, so that ends up as collateral damage when the meds go after infected cells more than healthy ones. i thnk its more likely with my mast cell complication that i'm just super senstiive to near everythign.