CFIDS / CFS, Lyme or Both?!!

Discussion in 'Fibromyalgia Main Forum' started by muddyfeet22, Jul 20, 2010.

  1. muddyfeet22

    muddyfeet22 New Member

    Has anyone been tested for Lyme? Have you come out positive or "false positive"? Do people think there is a link?

    I was diagnosed with CFIDS a year ago (meaning I've been sick for 1.5 years). But I was tested for Lyme a couple of months ago. I went to an Infectious Disease specialist and he told me it was a false positive.

    However, my ND told me it was positive and that I needed to find a Lyme Literate Medical Doctor (LLMD). I'm still figuring this out. Had my tests redone through Igenex and am waiting.

    I'm just wondering if anyone has had a similar experience and whether they pursued the Lyme route.

    Also, if someone has been diagnosed with both CFIDS and Lyme have you found an LLMD who also treats CFIDS?

    I'm just not convinced yet that I have Lyme, so many of the symptoms of CFIDS can cross over into Lyme. It's confusing.

    Thanks in advance.
  2. kat0465

    kat0465 New Member

    But if you have access to a good LLMD, i say go for it. And what made that doc think it was a False Positive?!!?

    you can have Lyme and still have a negative test.can you remember being bitten by a tick???

    If it were me, i'd head for the nearest LLMD, your only 1.5 years into this mess, Dont wait!!

  3. muddyfeet22

    muddyfeet22 New Member

    Hi Kat,

    I have been on lymenet and doing a lot of research in regards to what chronic Lyme is about LLMDs etc.

    My initial Lyme labs were done though labcorp. All my IgGs were negative, all my IgMs were positive. The ID said it was a false positive because being sick for so long I would have had some IgGs show up positive.

    My only memory of getting bit by a tick was when I was 5 or 6 and I did not get sick afterwards. I am in my 30's now.

    My illness began in Jan '09. In the fall and winter of '08 I was under a lot of stress, I also began to have a large increase in intolerance to heat (all hormone tests came back normal). I then got an upper resp infection in Jan '09.

    1.5 months later I was still sick and sleeping 16+ hrs a day. Went to the Dr. and was given antibiotics. Didn't do anything. The upper resp stuff went away eventually but the fatigue did not.

    I was tested for EBV which I was told was positive. But it turns out that all it showed was that I had EBV in the past (which was true when I was 17), not currently. I don't know why my dr. at the time said I had active EBV.

    I also had tolerable aches in my ankle and wrist joints that eventually went away but come back when I have a relapse. I get worse after physical exertion, sore throats, swollen glands...Finally started going to an ND and was diagnosed with CFIDS in June '09.

    I went to a "lyme friendly" dr. in San Diego because he takes insurance. He told me I have a "classic clinical diagnosis of Lyme". When I asked him what he was basing this on he said my fatigue, aches in my joints, and brain fog.

    But I don't know why he would consider me having Lyme over CFS.

    I am concerned about being misdiagnosed with Lyme.

    I would like to find an LLMD who also knows CFIDS. My current pcp is empathetic but doesn't know much about either condition. I chose him because he at least believes me.

    I guess I'm posting on the CFS Board because I want to know if other people have been diagnosed with CFIDS but then later, possibly, Lyme and if they think it is possible to have both, is CFS and Lyme connected at all?

  4. Nanie46

    Nanie46 Moderator

    You should believe your Igenex test and your ND.

    It would be very rare to have a false positive. There are many false negatives however.

    Many people have had the same experience. CFS and FM are very often really lyme symptoms.

    Lyme is a clinical diagnosis based on history, symptoms and exam, not a lab test.

    99% of Dr's (like your ID Dr) do not understand chronic lyme and mistakenly rule it out with a negative test.....but he is even more uninformed if you had a positive test and then he ruled it out!!

    Chronic, longstanding, but active infection usually shows positive IgM bands with Lyme. It is different than other diseases.

    I see you have been on's good.

    There are lots of people there just like you and me who were first given diagnoses of CFS or FM and later found out the CAUSE of their symptoms is the bacteria Borrelia burgdorferi.

    You also need a LLMD to evaluate you for common coinfections like Babesia, Bartonella, Ehrlichia, etc.

    Please read this paper by a lyme expert....symptom list pg 9-11 and coinfection symptom info pages 22-27......

    also read....

    Please do yourself a favor and find a LLMD asap.

    [This Message was Edited on 07/20/2010]
  5. TigerLilea

    TigerLilea Active Member

    The "aches in my joints" is more of a lyme symptom rather than CFS. I would definitely get another opinion as you've only had this for 1-1/2 years so you have a much greater chance of a recovery than someone who has been sick for years. That applies to both lyme and CFS.
  6. victoria

    victoria New Member

    No test is 100% reliable, WB is less than 70% reliable even if done by iGenex. If you can, tho, I'd be retested by iGenex since they specialize in testing for these infections. It's extremely possible you may have been bitten by a deertick and not know it; my son was CDC+ yet never had a rash or any obvious fever, was a gradual onset.

    Also the likelihood of your regular doctor (not being an LLMD) giving you the right abx AND in the right amount is likely pretty slim. Sometimes one will not work while another one will... so sometimes it takes a bit of experimentation... plus, usually one has co-infections and it's not uncommon to take more than one abx together as a result.

    So, you could also not have Lyme at all but instead have one of the other common tick infections like Bartonella - it's more common to have more than one than 'just' one, unfortunately. Testing for the other tick infections suck worse than the reliability rate for the WB for Lyme, pun intended.

    Many abx will kill more than one 'bug', btw.

    I agree, do yourself a favor, please check out Nanie's links and talk to a good LLMD. You can get good referrals & opinions on docs at lymenet. If you do a search here, and on the lyme board here, you will see many who have turned up positive after all.

  7. victoria

    victoria New Member

    “Doctors are still in somewhat of a quandary, because we don’t have a test to tell if someone has an active infection or not,” Dr. Brian Fallon told me. “So we’re left with clinical judgment. That’s useful, but it’s not completely adequate. We don’t know who will benefit from additional antibiotics and who will not.”

    (Dr. Fallon is director of the Lyme and Tick-Borne Disease Research Center at Columbia University Medical Center, last week. Dr. Fallon is on the cutting edge of what we know about Lyme disease.)

    ... There have been some important scientific advances in the last five years. These two papers now show that Borrelia burdorferi can persist despite antibiotic treatment and apparent initial eradication. Additionally, some patients with chronic, persistent symptoms after initial treatment for Lyme appear to benefit from a repeated course of antibiotics, according to Dr. Fallon.

  8. kat0465

    kat0465 New Member

    that comment the doc made about it being a false Pos cause you have been sick for so long dosent even make sense!!

    your sick, but with what??!! Lyme!!! having cfs wont make you necessarily Positive for a Lyme test. Im with nanie, i think you should Insist on an Igenex test, they are the best at detecting Lyme.

    Ooh and My Igenex test was cdc Neg, but i still had a few Positive bands, i too was bitten as a small child, and have never been healthy,but i was still functioning. you know when your younger your immune system usually works better to fight off the bugs.

    when we get older & stressed or Viruses build up, is when i think we get in real trouble. i too was told years ago 20+ now, that i had been exposed to ebv, but that it wasent bothering me at the time, now My ebv titers are thru the roof, im Chronic now:(

    i have all of your symptoms, and a lot of llmd's will go by what your feeling Vs a test that may or may not show a bug.

    Please, if you've found an LLMD that Takes Ins( rare) will treat by your symptoms, DO IT!!
    theres no cure for cfids, there is however a chance at a cure for Lyme, especially if you catch it early!!!

    we still don't know if cfids is just a symptom of Lyme, or a whole other disease in itself.your on the right track, Like nanie and victoria said theres been a lot of peeps on the cfids board that really had Lyme.

    Get your rear to that LLMD!!!don't wake up 20 years from now still Ill, if it's Lyme you will get better, thats how you will know what your dealing with. remember what i said, your only 1.5 years into this.

    Let us know how your doing and good Luck!

  9. sorekitty

    sorekitty New Member

    Hi, I live near San Diego. I have been on Dr. Yang's waiting list for 2 years now and i don't really know of another LLMD around here. So please tell me if you know of one!!! I came up CDC negative but had enough positive bands to certainly persue it. i have put my health aside for my son and haven't followed through as bad as that sounds but it is what it is.

    i see dr Lesko in Del Mar who focusses on CFS, Fibro, Gulf WAr MCS, etc. I like him but he doesn't focus on lyme. i don't even REALLY know what i have. I hate these illnesses they really are awful.


  10. Nanie46

    Nanie46 Moderator

    I was rereading your post and saw that your initial labs were through Labcorp.

    If you got a positive result on your IgM through Labcorp, you should not doubt your result, because they actually have alot of false negatives.

    This means you have had lyme for more than one year but it is active.

    You could have been infected in Jan 09, or reinfected in Jan 09 (with the initial infection as a child held in check by your immune system), or stressors in the fall and winter of 08 and an infection in Jan 09 helped to activate that infection.

    When I got sick, I had a flu-like illness......upper respiratory with very sore throat. My Dr told me it was viral, but 21 years later I realized it was was bacterial...Borrelia burgdorferi.

    Your history, symptoms and exam indicated your labs!

    All signs are pointing to lyme for you now....please follow what seems obvious.

    Find a good LLMD who follows ILADS guidelines.

    I agree, you do not want to look back many years from now and say, I wish I had believed it was lyme and treated for it then when it may have been easier to treat.

    I wish my Dr's had been educated about lyme so I wouldn't be treating it 22 years into my illness.

  11. Misfit101

    Misfit101 New Member

    PLEASE see an LLMD asap! I thought my fm/cfs symptoms had kicked into hyperdrive...thats what sent me on the hunt for a forum and i found this one. I owe a debt of gratitude to nanie and others who sent me on the lyme search. I had a positive elisa. Please read all you can about lyme and co. Youll understand more if you do. There is so much to learn. And an LLMD can help you sort it all out. I wish you the best!
  12. muddyfeet22

    muddyfeet22 New Member

    Thank you everyone for your words of encouragement. I feel like I've been sick forever, but you're right, 1.5 years is not that long relatively speaking.

    It is also helpful to hear that others have similar symptoms and they ended up being Lyme.

    I have been tested through Igenex for both Lyme and Coinfections and am (somewhat impatiently) waiting for my results.

    The Igenex labs were very expensive but I do hope to get some reimbursement from my insurance (BCBS PPO). After that I hope to have enough to go to an LLMD. I have two in mind.

    What I hear many saying about the clinical diagnosis is important and helpful for me.

    Thank you so much and I wish healthy wishes for all of you.
  13. muddyfeet22

    muddyfeet22 New Member

    Sorekitty - I got a list of LLMDs in or near San Diego through a variety of sources.

    I went onto and to the Seeking Doctor discussion board.

    I also went to CALDA ( and through them signed up for a California Lyme yahoo group and requested info there.

    I had so many names it was overwhelming (still is) and just being an LLMD doesn't mean the dr. is good necessarily, so I decided to go to and call them and ask about some of the names I had narrowed it down to.

    This all took me over a month to figure out because I don't always put together ideas as quickly as I used to.

    I have not actually gone to an LLMD yet as you have to pay up front for most of them and then get reimbursed by your insurance later.

    This is why I ended up with a Lyme friendly Dr. who is covered by my insurance. I am hoping to get as much testing as possible through him and then (and with the help of this board convincing me) find an LLMD.

    Though I am beginning to think I should go to an LLMD sooner than later because I am starting to realize that an LLMD would know of other things to test me for.

    Right now I feel like I really have to self educate and go into the dr.'s office already with a lot of info. This is of course extra difficult with CFIDS, Lyme etc. I need to know what tests to request sometimes and not rely on the Dr. to know.

    Many sites such as CALDA and Lymenet request that LLMDs names not be put up on discussion boards.

    Feel free to contact me directly through this site or find me under muddyfeet on lymenet and send me a personal message. I can then send you some LLMD names.

    Please try these sources.

    I am going to be looking at the sources that Nanie46 and Victoria posted on this discussion board as well. I suggest looking at those too.
    [This Message was Edited on 07/21/2010]
    [This Message was Edited on 07/21/2010]
  14. u&iraok

    u&iraok New Member

    about Lyme--I've read that it's thought that not only ticks spread Lyme but other bugs and also that you don't have to get bitten by something, that it could be spread other ways, even in the womb.

    Just so people don't rule out Lyme if they think they've never been bitten by a tick.