Saw Rheum for first time - says CFS caused by Herpes Virus??

Discussion in 'Fibromyalgia Main Forum' started by busybusymom, Aug 17, 2005.

  1. busybusymom

    busybusymom New Member

    Is this correct? He wants to start me on Famvir - he's not sure if it will work. I think my medical history overwhelmed him to be honest.

    I thought I might have fibro - but he says it's myofascial pain, yet when he pushed trigger points in my upper back, neck and hip, HE triggered utter pain. Can fibro and myofascial pain be one in the same or are they completely different? Everything I have read on fibro (symptoms, etc.) correlate to what I have been experiencing for the last year-and-a-half, in addition to CFS for almost 5 years!!! UGGGGGGGGGHHHHHHHHH!!!!!

  2. suzyloon

    suzyloon New Member

    NEVER HEARD THAT one?!! You poor thing.
    I have hear accidents, traumatic events, infections which Herpes Virus is a type of I guess... BUT to say that is is cause by Herpes Virus... I have never heard. They really don't know yet what it is caused from... At least that is what I have read... it is a theory.

    Anyone else?

  3. bunnyfluff

    bunnyfluff Member

    caused my downfall. It changed my immune system, triggered my celiac's which went undiagnosed, caused huge problems, almost killed me, and did major damage, leaving me with this mess. So, you could say that it was the herpes virus that got me here, yes.

    I am on Topamax now, an anti-convulsant with wonderful results, I have gotten my life back for now. That and some Vicodin get me thru the day mostly pain-free. What a great thing that is. :)
  4. TNUtammy

    TNUtammy New Member

    I've been to several rheumys and have never gotten any help from them. They tell me to do the exact things I've been doing for years, but when I tell them that, no one seems to have an answer for why its not working...
  5. rigby

    rigby New Member

    With CFS the doctor would test for different virus and then if you had them that is what cause CFS that was in the 80 and 90's not sure now. I was tested for the estbar HHV6 and CMV which I had in high numbers so I was dx with CFS along with some other lab.
  6. nancyann62

    nancyann62 New Member

    Dear Jennifer,

    If guessing worked we would all be well. This doc is guessing but please let him do that for someone else.
    Get another opinion - another doctor. nancyann
  7. elsa

    elsa New Member

    Hi Jennifer,

    There is no known cause of CFS. At one point many years ago, they speculated Epstein Barr virus was the cause, however, had to back off from that theory.

    What is known is that several viruses plus mycoplasm can become reactivated due to CFS. We have very elevated numbers with one or many of these pathogens, but none of them can be pinpointed as the cause.

    I have very elevated EBV ... but only that one virus. It is fairly routine for a doctor to suggest a treatment course of anti-virals. Mine started with valtrex and then tried famvir ... without success. Apparently, many of our members here have been helped with anti-virals. Mikie has been helped with famvir and some of the FCC patients are taking AV's as well.

    Transfer Factor and Whey protein are very good supplements to try if AV's fail. Colostrum is also.

    I don't know why he would be open to a diagnosis of CFS and then shy away from FM. I'm coming up with a big question mark there ... sorry.

    Either way, I'm not sure I would be comfortable with a doctor who is telling his patients he knows what CAUSES CFS. That is just an incorrect statement, even if the treatment suggestion is on track.

    You know, lately I haven't read many posts where people were happy with a rheum.'s treatment plan , options or opinions. I know alot of members are happy with their rheum., but just as many seem to be dissatisfied with them.

    You might consider finding another doctor to help you.

    Hope you feel better soon ....

  8. happygranny

    happygranny Member

    I highly recommend you google Myofascial Pain, Fibromyalgia and Devin Starlanyl. She has written a few books on the subject, and most of the information is freely available at her website.

    Very informative.

  9. Sandyz

    Sandyz New Member

    Many people with CFS do have Epstein Bar Virus which is in the herpes family. I have that and my specialists is treating me with anti-virals. They also find a lot of mycroplasma infections.

    It is a good think that your doctor is trying to kill off the viruses. He just didn`t explain it very well to you.
  10. Sunrise2780

    Sunrise2780 New Member

    I have been researching MP and FM for years. My suggestion is definitely follow 'happygranny's' suggestion. In addition, I also agree about Devin Starlanyl, she does a great job of detailing and informing.

    Usually what I do is find the newest info I can, make sure there's a Dr, hosp, etc connected to the article, print it out & bring it to the dr. I also make sure the url address is on the article.

    YOU have to get educated about your illness! PLZ - DON'T let some of these $$#$#@ drs play w/your mind! Have your own documentation. I do, and I have been known to leave a dr when I felt they weren't up-to-par!
  11. busybusymom

    busybusymom New Member

    Thank you for all your comments and opinions. I am leary about what he said and felt that some of my questions were being "brushed off". To make matters more unnerving, he is a clinical professor at UCLA and had Vioxx posters in the examining room. Wasn't this pulled from the market????????!!

    Anyway, I agree we all have to do our own research. I've been doing it for years now, and decided to finally see a rheumy. I will definitely rethink the Famvir check with my personal physician, who by the way, is awesome.

  12. simka

    simka New Member


    It sounds like a big issue with you was communication with this doctor, and perhaps getting different issues raised than what you expected. But I would have to say communication is or can be an issue with many docs including some good ones, it may improve with subsequent visits. There may be more pluses than minuses overall with this Dr, which you will have to sort out.

    I see a couple of good signs here. This doctor was not dismissive of your conditions at all, and in fact offered a treatment that may help though it is uncertain. I would be suspicious of any doctor who offered assurance that their treatment would "take care of" CFS or FM etc. And the diagnosis of myofascial pain vs. FM may be correct, and offers some "bright spots" from my own experience.

    On the viral issue - from what I've read here, a number of reputable doctors talk about herpes virus of different types being either triggers of some sort or otherwise reactivating and causing problems in CFS. They can be difficult to treat but Mikie and others believe antivirals have helped, if I remember correctly. You should try searching past posts on famvir, herpes virus, etc. There are additional treatments, some nonprescription, that you can read about too. Many doctors don't even consider this, so I think it's positive your rheum did, and appropriate that he didn't hold it out as a cure.

    On myofascial pain - I had this and still get it, it is not the same as fibro pain and the good news is that there are some treatments for it some of which one can do oneself. I later was also diagnosed with fibro, if anything that is the diagnosis I don't want and would rather question.

    I have heard of but not read the book by Devin S., which is supposed to be good. When I heard about the myofascial pain I bought a book by Claire Davies, on The Trigger Point Therapy Workbook. I also bought a Theracane. With some pain attacks, I could work them out with the Theracane, and got good results, and rather quickly. It wasn't easy, there is some initial pain involved as in a very deep tissue massage, but there can be great benefits.

    I have also heard of trigger point injections for MFP pain, I don't think these work for fibro pain. I haven't had them so can't offer you personal experience there.

    Also, as in my experience, a diagnosis of MFP now doesn't mean, unfortunately, that you will not also get fibro. You may not just be there yet. And I think maybe some doctors don't distinguish between MFP and fibro, or don't even know about MFP, which I think is BAD because it seems like there are more treatments for MFP. Part of me wonders whether if MFP and other pain were caught and treated earlier, whether fibro could be prevented in some cases. It actually sounds to me like your doctor was more knowledgeable than most.

    You have been given a lot of news and information to process. Whatever you do, it will take time to sort things out and time for things to work. I wish you good luck in this.

  13. ldbgcoleman

    ldbgcoleman New Member

    I hate to disagree with alot of you but I do. I believe your rheumy is on the right track. I go to the FFC in Atlanta and every single person I have met seeking treatment has some type of virus or Lymes or both. One of the common ones is HV6. There is viral testing that can be done to determine which virus or viruses you have.

    The main treatment for viruses is Antibiotics. I believe a combinaton of things including stress and an accident childbirth ect. push you immune system over the edge and allow these stealth viruses to become active. Try searching on steatlth virus you will be amazed.

    I't true the virus probably did not cause the CFS or FM but it can definately be a contributing factor. At least this Dr is trying to help you and not just giving you an antidepressant. Try asking him to do blood testing to determine if you have a virus first.

    Good Luck to You! Lynn
  14. justjanelle

    justjanelle New Member

    I just wanted to check something you wrote in your message (just above).

    You said that one of the main treatments for viruses was antibiotics. Are you sure this is correct? I thought antibiotics only kill bacteria, not viruses. And that there was some other medication called "anti-virals" that kill viruses.

    Best wishes,
  15. elsa

    elsa New Member

    You're right Janelle ,.... probably just a slip. Anti-virals are for viruses, anti-biotics for bacterias.

  16. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I also think your Rheumy is onto something. Hopefully he's ordered extensive bloodtesting though. As most will tell you here, it's is super hard to find a Rheumy that will actually attempt treat you.

    If you dismiss him and go to another doctor, you'll more than likely get plyed w/ antidepressants and other stuff taht if it helps, it only helps you "learn to live w/ it". His treatment option offers a decent remission.

  17. ldbgcoleman

    ldbgcoleman New Member

    I know I am taking Doxycyclene for mycoplasma and Famvir for EBV. Mikie know all about this stuff! Mikie are you out there???? I am continually learning and am not a Dr. But since I began treating the viral and bacterial issues I have gottn alot better! Lynn
  18. auntcon

    auntcon New Member

    my titers were over 40 (you needed over 20 to be diagnosed with chronic fatigue when i did this)

    Concerned EB virus.

    after the anti-viral it was ZERO

    so that did work

    But I'm still chronic fatigue because EB it was decided wasn't all of what it takes to be chronic.

    WE are all learning as we go... I'm glad to have a dr that's willing to try anything I want to try or suggests new areas of thought, especially since med don't work the same for us.

    Keep after it.

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