Dx'ed with Lyme...thoughts

Discussion in 'Fibromyalgia Main Forum' started by smhaws, Oct 8, 2008.

  1. smhaws

    smhaws New Member

    So my IGeneX Lyme tests came back positive. Luckily, the doc I've been seeing specializes in CFS, FM, Lyme, and other chronic diseases. So he's jumping into a Lyme treatment protocol, and he's "officially" changed my dx to Lyme. I guess for paperwork purposes.

    I was so brainfogged during the appt that I didn't catch most of what he was saying. (My husband was there to take notes.) I'm kind of confused about what this all means. CFS? Lyme? Do I have Lyme and *not* CFS? Do I have both?

    I suppose in many ways it doesn't really matter what I call it as long as I have a doc who's on my side and willing to try different approaches until we start to see improvement. Still, this change in dx reveals that I'd started claiming "CFS" as part of my identity, and I feel a little betrayed that the doc has "taken" it from me.

    Silly, I know, because I insist every day that I am NOT my disease; I am a person with a disease. But with the CFS vs. Lyme fights on the board (and elsewhere), I do feel kind of...lacking in a certain identity. I am also dreading having to explain all of this to family/friends, because it was hard enought to get them to understand CFS. How do I tell them that it's actually something else (maybe), but I'm just as sick and miserable as I was before?

    Grrr... I don't think I'm making sense anymore. To top everything off, I think I've finally caught the cold that's been going around my husband's office. Sigh. Thanks for letting me rant. It's nice to have an outlet.
  2. lpn9999

    lpn9999 New Member

    Well, you are always welcome on the Lyme board as well. Most of the people who post there have also been diagnosed with CFS or fibro at some point so you'll have a lot of company.

    It's great that you can stay with the same doctor so that it's not too many changes. There's a lot of good resources (not that they all agree) on treating Lyme - you'll want to get a sense of the options and weigh them, even with a good doctor.

    Any of these dx's are like having a baby. No matter what you do someone will think you should do something else. It's ok to just smile and thank them for caring. :)

  3. victoria

    victoria New Member

    Most find they have more than 1 'cause'/infections... you can have lyme plus 1 or more of quite a few other tick born infections like mycoplasma. Mycoplasma has been talked about in conjunction with CF/FM for quite a long time, for instance, before lyme started getting connected.

    Then of course because your immune system is compromised, you are likely to have 1 or more viral infections, especially the herpes family. HHV6 is one of the newer ones indicated.

    In many ways it's easier to tell others you do have lyme as CFIDS has had such a bad reputation... but, imho, it is likely you have more than one thing.

    I'll add your name to Kathy's list on the lyme board. You might be surprised to see how many are there already. There have been many others if you take a look online elsewhere who first had a dx of CF/FM and then found they had lyme amongst other things. There are also a lot of good posts on the lyme board.

    So glad you found out and you sound like you have an open-minded doctor!

    all the best,

  4. smhaws

    smhaws New Member

    Yep, I've also got really high EBV titers, and elevated HHV6 titers. And was positive for C. pneumoniae. And had symptoms of yeast overgrowth.

    Which is part of what makes this all so confusing...I keep wondering what I should be treating first. My first few doctors (who denied that CFS was a real problem) kept insisting that all of my problems were just chronic EBV, but they wouldn't do anything about it. (I was told to wait two to three years and see if I got better.)

    At first I was fixated on the virus aspect of my symptoms, but then I found out that there are other problems too (Lyme, yeast). So I guess I'm going to trust my current CFS and LLMD for now and treat the Lyme and yeast first, understanding that after that we may need to look more closely at the viruses. But my doc says that hopefully my immune system will be rebuilt after we clear some of the other stresses (bacterial) and we might not need to treat the viral stuff.

    It's a lot to tackle. I'm beginning to understand that my problems (whatever you want to call them) did not come about in a linear fashion. For a long time, I thought of my illness as a domino chain, where Domino 1 knocked down Domino 2, then 3, then 4, and so on.

    Now I'm realizing that it's more like a domino fan...when the first domino fell, it knocked down two in the next row, which knocked down three in the next, and then four in the next, spreading outwards and creating malfunctions throughout my body.

    Since I can't go back and pick up the first domino and expect everything all the other dominos to jump up with it, I need to work to pick up all the dominos. Which happens slowly. And I need patience.

    And I think most of all, I need to understand that this isn't going to always make sense to me. A year ago I was perfectly healthy, and then I caught a "cold" on Thanksgiving and never got better. How does that tie in to Lyme, EBV, HHV6, C. pneumoniae, low thryoid levels, etc.?

    I suppose for my current purposes, it doesn't really matter. It doesn't matter how I got into a hole as long as I've got some help to get back out again.

    It's confusing and it's not going to make sense just because I want it to. And that's got to be OK with me. Otherwise I'll just drive myself batty.

  5. redhummingbird

    redhummingbird New Member


    It's a very confusing illness. It's hard to know which came first but in the end it doesn't really matter.

    I've heard that treating the bacterial stuff first is important. It's possible that after you treat lyme and cpn that the viruses will resolve on their own.

    Or you might be like a lot of us and treat the bacterial stuff and then end up having to treat the viral issues.

    I would recommend that you also focus on detox and reversing immune dysfunction.

    Regardless of what the illnesses are, at bottom this must be done.

    Bottom line though-lyme and cpn won't resolve on their own. They need to be treated.

    I can't remember all that you wrote but it's also a good idea to get thyroid, hormones, adrenal functioning tested also since chronic illness affects those.
  6. munch1958

    munch1958 Member

    I agree with what Redhummingbird wrote 100%. I tried AV treatment first and it didn't help.

    Then I begain attacking yeast which took over 2 years to resolve and didn't go away until I started on heparin. I've been on Diflucan and Nystatin for close to 2 years.

    Then it was time to go after the EBV with Famvir. This made me horribly sick. I lost 10# and had some projectile vomiting. I never knew when the vomit was going to erupt --Gross!

    Prior to this round of Famvir, around late 1997-8, I did one full year of Acyclovir to bring down the EBV titers. Nothing happened. No side effects and no change in numbers.

    I'm personally leaning toward calling this illness "FBI" for fatigue based illness. That would encompase Lyme and coinfections, hormone deficiencies, PTSD, GWI, CFS, ME, and FM.

    Since there are some hormonal deficiencies that go along with these illness, something would have to be added to FBI to cover that. My deficiencies are along the HPA axis.

    I've made wonderful progress with treating Lyme. I was afraid of Abx in the beginning because of "superbugs" and making my candida worse. I'm glad I plunged in anyway. I would never have known that it's possible for most of my symptoms to go away.

    Hang in there and keep us posted on your progress!
  7. smhaws

    smhaws New Member

    As always, it's good to hear from people who have been where I am now. I've got a long road in front of me, but I'm ready to start walking.

    P.S. Rifampin turns my pee orange. I find this absolutely hilarious. So I'm glad to find that I've still got a sense of humor somewhere. :)
  8. smhaws

    smhaws New Member

    everything that's been said makes so much sense to me!

    i haven't heard before about methylation...i will look that up and keep learning!