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Confusion about EBV and antivirals...

Messages
22
I thought I’d post about this, maybe get lucky enough to get some help. and maybe be pointed towards the right direction. because I am currently so confused...

How important are Antivirals in a Chronic EBV infection and how likely is a regular GP to prescribe them? Could I get more info on this EBV, my dr wouldn’t even test for EBV antibodies, just monocrit which came back negative. I don’t think any Dr would want the drag of having to follow up with a patient for this stuff? When most of them don’t even believe in it, how are people even getting tested for all these viruses?

I have CFS, all the symptoms, etc. I saw a youtube video saying that if one is to catch the CFS early, the chances of recovery are greater, and so I was told by somebody else, so I’m really trying here, trying to get to the bottom of this as soon I can. Currently just need to figure this aspect out.

but my dr wouldn’t try to help, and he didn’t test me for EBV antibodies, he just didn’t wanna have anything to do with it. How do I possibly test for all these viruses if doctors keep saying “I don’t believe there’s a good enough cause”, because they don’t believe in CFS in the first place? It seems impossible to do this.. (my question is: would he have prescribed Anti-virals in that case? Let’s say they came back positive would he have prescribed the Anti-virals or would have said that it will clear on its own, would he have prescribed the anti-vitals then? How important are they to take? I am reading that treating the Virus with antivirals can bring lots of relief, but also Drs don’t prescribe them. I just want to get better before it’s too late- anybody can help out?

I am currently unsure as to what caused the CFS. but I do have symptoms of chronic EBV (sore throat, fatigue, flu-like symptoms), but that could also just be the CFS? although it would have to have been be re-activated, is it even possible to catch EBV from ways other than kissing? I’ve had a really bad sore throat a while before, so that could’ve been the EBV, and then it reactivated with stress, and evolved.. So what do I do and how do I convince a Dr to test for EBV antibodies? I need to resolve the infection first..

How do I get a Dr to test me for all the Viruses, let’s say it’s HV-6: as underlined in this article: would it have to be a CFS specialist of some kind? https://sites.google.com/site/cfstestingandtreatmentroadmap/
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My naturopathic doctor ran standard LabCorp tests for various infections and was able to identify 4 chronic viral infections and 2 chronic bacterial infections. A top ME/CFS specialist agreed with these findings and went on to do further EBV testing and found a very sneaky EBV infection.

I have seen an immunologist, rheumatologist, and infectious disease doctor, too, none of which was particularly helpful.

Any doctor who has the curiosity and will can run tests for infections.

I tried all the holistic approaches to treating the infections, but nothing helped until Valcyte was prescribed, and 4 months of IV antibiotics for the bacteria be cause my immune system was too sick. I also have low Immunoglobulins, and get IVIG, too.

I also developed autoimmune POTS and MCAS, which my ME/CFS specialist believes were caused by the EBV. As these produce my worst symptoms, I sure wish I could have avoided them by a doctor identifying and treating the viruses sooner.

Maybe you can go armed with some of these on your next doctor visit. And, if you do get testing for EBV, make sure they test EBNA, EA, and VCA IgM and IgG and a PCR. There can be false negatives.

And if your doctor still refuses to help you, then find another doctor.
 

Attachments

  • Holtorf_Treatment_of_CFS.pdf
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  • serological EBV diagnosis.pdf
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  • EBV diagnosis still challenging.pdf
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  • deficient EBV response.PDF
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  • EBV and autoimmune disease.pdf
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  • montoya valganciclovir.pdf
    272.6 KB · Views: 13
  • Maes viruses and CFS.pdf
    697.6 KB · Views: 11
  • Lerner-antiviral-herpesvirus CFS.pdf
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edawg81

Senior Member
Messages
142
Location
Upstate, NY
First off straight up ask the dr to test for ebv 4 titer test and cmv hh6 igm and igg. If they refuse you have several choices.

See another dr. Or
See a private dr that is paid to listen to you (LLMD, functional, naturpath) or
Get the labs done without a script here
https://www.walkinlab.com/epstein-barr-virus-ebv-profile-chronic-active-infection-blood-test.html


Your best bet may be a private dr, costly but willing to work with you.

If you want to bring out the big guns, travel to see an MECFS specialist.

https://docs.google.com/document/d/1gSGQZKIZIPXOcCFrjp5EjTGdWD3yotYSWTAs-wxFsKU

Good luck, it was a struggle to get myself AVs when I got ME until i found a good dr.
 
Messages
22
Thanks so much guys, the only question I have is: even if I did test positive for EBV, no Dr would prescribe the Valtrex. Unless they are a CFS specialist, they won’t prescribe the Valtrex. Only an understanding CFS specialist would, any other Dr would say that the virus would just clear on its own. Even if I did manage to get tested for EBV antibodies, they most likely would not prescribe an antiviral, right? So how are people getting them prescribed even?? The same goes for HHV-6A/B, doesn’t it? Would they even prescribe Valcyte for it, if they don’t want to work with CFS? It’s just that my Dr already sent me away because he doesn’t want to work with CFS, so I’m kinda stuck because nobody wants to help treat the Viral aspect of the disease...
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks so much guys, the only question I have is: even if I did test positive for EBV, no Dr would prescribe the Valtrex.
My funcrional medicine naturopath prescribed Valtrex. My ME/CFS Specialist wanted to raise the dose, so he changed me to Valcyte" ehich they paid for. I sufgest you read the Montoya and Lerner articles I posted above, and share with your doctor.
Unless they are a CFS specialist, they won’t prescribe the Valtrex. Only an understanding CFS specialist would, any other Dr would say that the virus would just clear on its own.
What you need is a curious doctor whi realises you're sick and is willing to think outside the box. The articles i posted abive should make the case fir proper diagnosis abd treatment. Print 'em out, familiarize yiyrself with the key pounts, and present them to yiur dictir, ideally 9nr who is not threatened by patients doing their oen research, which is essential to treatment, given tgat the science isn't complete. Valcyte changed me dramatically vm for the better. Perhaps you could ask for a 4-6 week trial.
Even if I did manage to get tested for EBV antibodies, they most likely would not prescribe an antiviral, right?
So if they find you gave a brojen leg, diabetes, or cancer, they'd refuse to treat then? I think not. You deserve proper treatment for what ails you.
So how are people getting them prescribed even?? The same goes for HHV-6A/B, doesn’t it? Would they even prescribe Valcyte for it, if they don’t want to work with CFS? It’s just that my Dr already sent me away because he doesn’t want to work with CFS, so I’m kinda stuck because nobody wants to help treat the Viral aspect of the disease...
I don't think the label ME/CFS grts you much help. It's seen as a lost cause or psychiatric problem for many. What's in your interest to have enough tests run do that you find abnormalities and are diagnosed with ICD10 codes which qualify for treatment.

Your doctor doesn't treat patients with infections, iron, magnesium, or B12 deficiencies, endocrine abnormalities, immune system abnormalities, or high or low blood pressures or food allergies? What exactly, does he do? Sit around waiting for people to show up with the vote to diagnoses that are his favorite to treat?

Maybe you need a less intellectually lazy doctor. Find one that can and will help. Read the aetickes I gave you (or at least the abstracts, intros, and conclusions, and act like a confident, educated, motivated patient, and eventually you will find the help you need. There's only a very short list if ME/CFS specialists, so waiting around for miracles is wasted time. Do what you can to get help - be educated and persistent...

I finally have a wonderful team of 4 doctors helping me, but it took seeing 12 useless ones beforehand... Tbey dismissed me, yelled at me, and fired me as a patient. My current doctors are brilliant experts at what they do, but speak to me as an equal, knowing I'm educated, proactive, and motivated, and they freely admit there are gaps in the science and they are guessing as best they can from research, conferences, and are continually learning and willing to try new ideas that I bring to them.

Best wishes...
 

JES

Senior Member
Messages
1,318
Thanks so much guys, the only question I have is: even if I did test positive for EBV, no Dr would prescribe the Valtrex. Unless they are a CFS specialist, they won’t prescribe the Valtrex. Only an understanding CFS specialist would, any other Dr would say that the virus would just clear on its own. Even if I did manage to get tested for EBV antibodies, they most likely would not prescribe an antiviral, right? So how are people getting them prescribed even?? The same goes for HHV-6A/B, doesn’t it? Would they even prescribe Valcyte for it, if they don’t want to work with CFS? It’s just that my Dr already sent me away because he doesn’t want to work with CFS, so I’m kinda stuck because nobody wants to help treat the Viral aspect of the disease...

Unless you live in the US and see an ME/CFS specialist, I think your odds of getting antiviral treatment is quite low. Valtrex probably is easier to get, but from my understanding Dr. Montoya mainly prescribes Valcyte nowadays. Not very many ME/CFS patients are helped by Valtrex anyway and Valcyte requires a doctor who is familiar with the drug and is willing to monitor you due to the risks associated with it.

Either way, the leading ME/CFS researchers are currently not thinking of ME/CFS as a chronic viral infection. You may reduce certain symptoms with antiviral treatment, but as for correcting the bigger issue, I think we all have to wait and see what the big research centers like Ron Davis' at Stanford will bring us.
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Valcyte requires a doctor who is familiar with the drug and is willing to monitor you due to the risks associated with it.
Dr. Montoya was asked about these risks and he said that most parients who had gotten the drug early on were very ill already with cancer, etc. so the risks are overblown.

Still, I had a CBC and CMP (complete blood count and complete metabolic panel) done every 3 weeks throughout my Valcyte treatment. My ALT/AST bounced between normal and slightly above normal and my GFR went down slightly bit was in the normal range.

The only real risk for a younger person is its impact on fertility.

In the US, even in the generic version, it's a very expensive drug, far more expensive than Valtrex. My insurance stated that I was saving $18,000 on my 3 month prescription. Its price gouging by the pharmaceutical companies. This could be a reason why it may not be available in some countries.
 

Tammy

Senior Member
Messages
2,167
Location
New Mexico
I'm treating chronic EBV with natural anti-virals and have improved. My protocol is more involved though and includes more than the anti-virals.
 

Sidny

Senior Member
Messages
176
I'm treating chronic EBV with natural anti-virals and have improved. My protocol is more involved though and includes more than the anti-virals.
Do you mind sharing which of these natural antiviral as have helped you? I've been taking St. John's wort and selenium but have not felt much improvement although I do not know which if any viral infections they may be treating.
 

Tammy

Senior Member
Messages
2,167
Location
New Mexico
Do you mind sharing which of these natural antiviral as have helped you? I've been taking St. John's wort and selenium but have not felt much improvement although I do not know which if any viral infections they may be treating.
The main anti-virals I use are licorice root (pulsed), L-lysine and Cats Claw. I have also used olive leaf, lemon balm, monolaurin and silver hydrosol.......although not as frequent as the others. It took quite awhile to see improvement and as i mentioned before I am also using other supplements along with clean diet.