May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Someone has tried this 2LEBV?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by eric_gladiator, Nov 8, 2017.

  1. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    Has anyone proven this successfully? My doctor says that I have a reactivation of epstein bar and that's why my fatigue, although I do not have anything clear. I want to be sure that this is not going to make me worse since he told me that at the beginning I was going to be more tired
     
  2. JES

    JES Senior Member

    Messages:
    665
    Likes:
    1,216
    @eric_gladiator What did your doctor base the diagnosis on? CFS/ME was commonly thought as chronic EBV infection back in the 1980's, but today no prominent CFS/ME doctor or researcher holds the view that CFS/ME is caused by a single virus. Some people claim to have received benefits from antiherpesvirals like valacyclovir, but generally speaking it's no miracle drug for CFS/ME.
     
  3. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    @JES
    according to an immunological analysis the predetermined values in sfc work well for me. I have been told to try this but I am not sure if it can make my fatigue worse, right now I am in a state of slow recovery but recovery at last. Anyway I know that in the future if or if I'm going to have to deal with the ebv, the igg is through the roof! I do not know what to do, if you can give me some help I thank you
     
  4. santi

    santi

    Messages:
    69
    Likes:
    10
    I did try it a couple of years ago, both 2LEVB and 2LEID. What I remind is that they made me feel worse, but that's probably because the inmune system was fighting harder, at least was what the doctor told me. You have to take them for a few months, you won't notice the effects right away.
    Those medicines are a little bit expensive, but are worth trying.
     
  5. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    @santi

    After you stopped taking them, did you find yourself better or did you just get worse?
     
  6. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    Many of us do have chronic EBV, among other issues. I see a prominent CFS/ME doctor who found it and put me on valganciclovir, which has helped tremendously. I also take LDN.
     
  7. santi

    santi

    Messages:
    69
    Likes:
    10
    I have mixed feeling about that. I think I felt a little better but because the inmune system wasn't being so effective.
    i stopped taking them because I relate it to homeopathy, but to be honest I should try them again. Probably I will do.
     
  8. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    @Learner1

    I shuffle that option in the future if this does not change even though I would need a medical specialist in this that will prescribe me. My current doctor is based on the natural rather

    @santi

    I'm waiting to start with him. I would like to start now but my digestive symptoms have scared me lately, I have pain, like very little and this does not let me advance as I would like
     
  9. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    I also tried artesunate, which has been effective against EBV, high dose vitamin C, oxygen therapies, and several immune system boosting strategies, but have found valganciclovir and LDN to work better.
     
  10. JES

    JES Senior Member

    Messages:
    665
    Likes:
    1,216
    I don't think chronic EBV can be determined by blood antibody test, because it's a virus that stays in body forever once you get it, so even a healthy individual that has once in lifetime caught EBV will mount an immune response against it forever.

    Valganciclovir may help to suppress EBV, though it's also antiviral against many other herpesviruses and works as anti-inflammatory by suppressing microglial activation. Same thing with LDN, LDN has many benefits on immune response and seems to help with autoimmunity, so it may also work if we consider the hypothesis that CFS is an autoimmune disease.
     
  11. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    Right. Just like chicken pox, which stays dormant for years, then erupts again. Or stays in a chronic state, causing symptoms and autoimmunity. It's not the case for everyone, but for some of us it is.
    I take valganciclovir as I have multiple chronic herpes family infections, identified with multiple tests with multiple doctors, including a top CFS expert.

    He also tested for and found multiple auto antibodies he believes were caused by the chronic EBV. He described this to me a month before Mark Davis described it at the OMF Symposium. While there, I also had a lengthy chat with Jarred Younger, who'd found the 2 subsets, infectious and autoimmune... I asked him if there might possibly be a third subset that had both chronic infections and autoimmunity, and shared my situation with both and he said "Absolutely."

    This is a complex disease, with different triggers and differences in current presentation. There are the same mechanisms that are at work, but there are a lot of individual variations... Just as the metabalomics studies have found we share much but there are many individual differences.

    Autoimmunity is a very important component for many of us, but it doesn't rule out chronic infections, toxins, and a whole host of other inconvenient issues.
     
  12. rodgergrummidge

    rodgergrummidge Senior Member

    Messages:
    124
    Likes:
    273
    Really @JES ? It is has been widely published that EBV infections can lead to CFS/ME symptoms in a subset of patients. The epidemiology linking EBV to CFS is well described and has been widely published. Can you provide published references from any 'prominant CFS/ME doctor' or scientist claiming that EBV does not lead to CFS/ME in some patients?

    Rodger
     
    Learner1 likes this.
  13. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    @Learner1

    It will be my option in the future if I can not remedy it with anything that the doctor gives me. Although antivirals can cause serious unwanted effects? I have my doubts if they can trigger symptoms like antidepressants did with me


    @JES

    I'm not an expert on this, I only know what I read. Many people say to start with me because of the virus ebv. Let me ask, is ldn anti-inflammatory? reduces the burden of ebv? if so, it would be almost better option than antivirals for what I understand since the latter have side effects
     
  14. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
  15. JES

    JES Senior Member

    Messages:
    665
    Likes:
    1,216
    Actually if you read my previous post (I might have stated it a bit unclear), I wrote that no prominent CFS/ME doctor belives CFS is a cause of a single virus, the way that back in the 80's CFS was basically considered equivalent to chronic EBV. So I did not mean to say that CFS can't be caused by EBV, but that doctors don't believe anymore a single virus is cause of all CFS cases. There is also evidence that those with past EBV infection are more likely to develop Multiple Sclerosis, but it doesn't follow that EBV is necessarily the causative factor in MS.

    Regarding LDN, I don't know whether it has any impact on EBV, there has been no studies on that. LDN has been studied for fibromyalgia and in Norway it's commonly prescribed to MS patients. The way it works as an anti-inflammatory and immune modulator, I think it's a good candidate drug and I'm using it myself at the moment. This video explains a bit the action of LDN.
     
    Learner1 and rodgergrummidge like this.
  16. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    I've been on acyclovir and valacylovir briefly in the past, and valganciclovir for 5 months, with no ill effects at all. Plus LDN for 2 months. I had less brain fog and less fatigue within 2 weeks of starting valganciclovir. My doctor monitors my kidneys and liver and I'm on a comprehensive nutritional supplement program. I can only say good things about the antiviral.
     
  17. eric_gladiator

    eric_gladiator Senior Member

    Messages:
    184
    Likes:
    133
    @Learner1


    I understand that the antiviral is only effective if there is a virus infection in the system, right? How much would you rate your improvement compared to before you were sick? Thank you very much this is helpful
     
  18. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    From what I understand, some antivirals can have immunomodulating effects in addition to going after the viruses.

    In my case, my ME/CFS doctor found evidence of chronic EBV, HHV6, CMV, and HSV2, not acute infections. He decided to treat them after other doctors dismissed my labs. My brain fog has vanished, cognitive function, ability to start and finish tasks has improved dramatically, PEM has diminished, and hours of daily sleep are reduced. I'm not cured, as I have multiple issues, but the valganciclovir has had a completely positive effect on my life.

    The attached might be helpful.

    One thing EBV can do is encourage the formation of various antibodies, which cause POTS, cognitive dysfunction, breathlessness, etc. which are difficult to resolve even after the virus is dealt with. That's why going after viruses early on is essential to long term health.
     

    Attached Files:

  19. rodgergrummidge

    rodgergrummidge Senior Member

    Messages:
    124
    Likes:
    273
    Hi @Learner1 , how did your doc diagnose chronic infection of EBV, HHV6, CMV and HSV2? I've been reading about chronic viral infections, but it is really hard to know how chronic infections (as opposed to acute infections or past infections) are diagnosed.

    thanks

    Rodger
     
  20. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,718
    Likes:
    4,674
    Pacific Northwest
    With a full battery of titers, plus symptoms, inflammation markers, plus the development of POTS antibodies. I had no IgM but high IgGs, positive PCRs, and a very strange presentation of EBV as described in the attached deficient EBV response doc.

    Both my top ME/CFS doctor and my primary doctor agree on my diagnosis, though I had other doctors dismiss my results as "past infections". My CFS doc said "I know what we were all taught in med school but its wrong.

    Additionally, the tests for various infections seem to vary. That is, certain tests are better for certain viruses.

    Since being treated for viruses, I've improved, while in the previous 18 months, of been going downhill, so I have no reason to doubt the diagnosis. I think a lot of patients may have chronic viruses that are missed and therefore don't get the treatment they need.

    My CFS doc and the researchers at the Symposium both described how viruses, especially EBV, can push the immune system to create autoimmune antibodies. I didn't have POTS 2 years ago, but developed it during the time I was getting sicker before antiviral treatment.
     

    Attached Files:

    rodgergrummidge likes this.

See more popular forum discussions.

Share This Page