re: lyme and CFS- what is the connection and can you have both?

Discussion in 'Fibromyalgia Main Forum' started by sickasadog, Aug 27, 2005.

  1. sickasadog

    sickasadog New Member

    I know there is a huge debate about lyme,as there is with CFIDS. I am having lyme testing done and I am very confused about something. I have been asking some questions on a lyme board since there are many more people w/ LD there. Many of these people were once diagnosed w/ CFIDS or FM. They seem to think that they now have Lyme and not CFIDS/FM. However, it seems that many people here who tested positive for lyme believe they have both, or rather that the lyme is one of the causes of symptoms of their CFS. One of my drs once told me that if you have lyme, it excludes you from a dx of CFS since the two are so similar. I have always thought I had lyme, but never had adequate testing to prove that. I read that Lyme can cause many, if not, all the symptoms of CFIDS/FM and can lower your immunity and leave you open to many viruses such as EBV, HHV6, Candida, and others that people w/ CFIDS have. So, it sounds to me that if one has Lyme, they might not have CFS afterall. Can someone please clarify this??

    Thanks
  2. dontlikeliver

    dontlikeliver New Member

    is that I never had CFS/FM in the 14 years I had that diagnosis.

    It was Lyme (and coinfections) all along, which produced a set of symptoms identical to "CFS/M.E".

    I think it would be very rare indeed to have both, the CFS type symptoms/syndrome is the result of the infection, and in many cases a misdiagnosis.

    Not everyone that presents with a sx picture of "CFS" will have Lyme, of course, there are many infections out there, and probably other causes also that will present similarly.

  3. sickasadog

    sickasadog New Member

    i kinda agree, but i know someone who was dx with both. So, are you getting treatment primarily for the lyme or the CFS or both?
  4. victoria

    victoria New Member

    When I took my son to get tested for Lyme (showing many of my symptoms, altho i've never been tested) they told me co-infections are more the rule than the exceptions - ticks usually transmit more than just lyme. They tested him for 4 or 5 other commonly transmitted tick diseases like babesia.

    While my son didn't show anything more than lyme, he's never been tested for any other infections like mycoplasma, chlamydia pneumonia, etc. But I wouldn't be surprised if there were... we'll cross one bridge at a time however.

    all the best,
    Victoria
  5. ANNXYZ

    ANNXYZ New Member


    ( all ten years) is a result of lyme disease . I do not think everyone with CFS has lyme , but I am willing to say that a large percentage of CFS / FM sufferers DO suffer from lyme unknowingly , as the tests given until recently
    have been known to be very unreliable as diagnostic tools .
    I realize others will disagree with me , but I strongly suspect lyme is often the bottomline in this disease .
  6. karatelady52

    karatelady52 New Member

    I've been diagnosed with Lyme and I think I've had it for years. I always thought it was FM.

    My personal opinion is that my symptoms are from the Lyme (plus I have 3 other co-infections). I guess I'll find out in about a year!

    I believe we have FM/CFS for a reason -- viruses, heavy metals, hormones all messed up, etc.

    There are people on this board who are getting well by treating these viruses and toxins. But that's just my opinion.

    Sandy
  7. tansy

    tansy New Member

    I have more than the zoonotic infections involved and issues with toxins too. There are PWCs who have been Dx with both; or lyme, CFIDS and FM.

    Teatment and disease management wise I have to be aware of all the contributory factors, treating the borrelia is an important factor but by no means the only one. Borreliosis/lyme filled in some gaps that a Dx of CFIDS didn't.

    Tansy





  8. dontlikeliver

    dontlikeliver New Member

    I have been treating Lyme (and Babesiosis) during the past 14 months or so with abx and antimalarials (and supplements). I am much better.

    As Victoria said, the majority of those with Lyme have also been 'lucky enough' to get more than one infection with that, such as Babesiosis or Bartonella. Many then, when their immune systems go haywire, get more infections, which are opportunistic, along the way, such as Mycoplasma, EBV, CMV, etc.

    Tansy, sometimes I feel that what I write may upset you (because I guess we don't agree on everything :) ) and it is very hard on a computer screen to word things in such a way that it is clear that I am not trying to do so.

    (Question:) However, there is something that I have noticed you mention many times and that is that you say that you have CFS and Lyme and Toxins and other infections.

    What I am having a hard time grasping is why you appear to feel this is not just the typical Lyme (or Borreliosis/Neuroborreliosis) picture because 'we all' (with Borreliosis) have a problem with toxins (the Borrelia produce them, and make us feel ill, and we are altered in such a way that we have a hard time expelling them). And, 'we all' have issues with other infections (zoonotic ones), which, as a whole, then produce the symptoms picture that some call "CFS". (so the CFS is not a separate disease) For instance, Dr B, in his guidelines, and other US LLMDs (I say US becuase as you know there are virtually none in the UK)make clear that those with Borreliosis usually have other infections (zoonotic infections also) playing a part, as well as a problem with toxins, parasites, what have you, just as 'Lyme patients' not as Lyme AND CFS patients.

    So, why do you think you are 'lumbered' with CFS AND Lyme, when (I am not a doctor) it appears that your dx of Borreliosis and co-infections is what is causing the picture of "CFS" through the disease/coinfections itself and it's release of toxins. I know in the UK, at this point in time, there is still a 'desire' to hang onto the CFS/ME label for many, perhaps with AWs endorsement, simply because of the NHS situation and perhaps that makes it easier to obtain any sort of treatment on the NHS. Whereas, of course, you'll be hard pressed to have the Lyme dx endorsed by an NHS consultant without a positive ELISA from Southampton, which I don't know if you have or not. So, I can understand it from that point of view only.

    Arrgh, I am finding it difficult to make it short and inoffensive sounding, but what I mean is, it seems to me you are making it harder for yourself and therefore making a huger problem to tackle for yourself by seeing it as two different diseases going on (no??).

    In a roundabout way, what I am saying is, you sound like a 'typical' person with tickborne/zoonotic disease and not like someone with Lyme AND CFS, so I am puzzled as to why you think you have both and curious if this is what AW is telling patients now. Is it because he is under fire and it is in his best interest to do so at the moment, and perhaps the NHS patients best interest for now, rather than a belief that he has that it is two different things altogether going on?

    Now I have surely even made my questions/concerns sound confusing also. I hope you get what I'm saying though, and understand that I am not trying to offend you, but rather feel more concerned than anything else.



    DLL
    [This Message was Edited on 08/28/2005]
    [This Message was Edited on 08/28/2005]
    [This Message was Edited on 08/28/2005]
  9. sickasadog

    sickasadog New Member

    I must say, I was kinda confused about the same thing. Everyone on the lyme board I am on is saying that if you have lyme it cancels out the dx of CFS. I do think, though that fibromyalgia can be secondary to lyme, as it is to many other illnesses, such as lupus, MS, etc. Anyway, many people, including myself, were told that the lyme was just ONE cause of the CFS and not the "whole" answer. As I mentioned, I am awaiting my results from the igenex test. However, I know someone who goes to one of the FFC's and their test came back positive and the dr delivered the news in a very "non chalant", matter of fact way, not giving weight to the seriousness of it or implying that this could be the answer to her problems. I was told by people w/ lyme that CFS can imitate almost every symptom of lyme and cause the same things, so why would people have both. They said they never heard of people having both CFS and Lyme. While I strongly believe CFS exists, I do think itis a syndrome and not a disease, meaning that it is a set of symptoms that occur together that has many underlying causes. For some, it might be hormones out of whack, for others, particularly w/ FM, might have been a car accident as trigger, and for some Lyme. So, perhaps if one does have CFS AND Lyme, the CFS is secondary as a result of the lyme and the many infections then seen, i,e. hhv6, mycoplasma, EBV, candida, etc are actually because of the lyme and it;s suppression on the immune system.

    All I know is if my test comes positive, I am going to be seeing a Lyme specialist to help me weed this all out. (of course, though, they will probably be biased and say it is all lyme, as the CFS drs will say it is one cause of the CFS)!!!!!!!!!!!!!!

    This is so frustrating!!!

  10. sickasadog

    sickasadog New Member

    for more responses. thank you
  11. dontlikeliver

    dontlikeliver New Member

    from my LLMD; for example:

    Lyme patients usually have -

    co-infections; tickborne and opportunistic (i.e. Mycoplasma, viruses (i.e. EBV, CMV, HHV6). Apparently, I do not have Myco, EBV, CMV, or HHV6 - was tested through MDL for those (CFS panel).

    neurotoxicity; Borrelia release toxins, which we have a hard time clearing

    Hormonal issues (adrenal, polycystic ovaries, insulin)

    Low blood flow to brain


    All these things (above) going on will produce a vast number of symptoms, which, if you put them next to a list of CFS symptoms would be identical. Therefore, I am also inclined to believe that CFS (syndrome) is a only a symptom of the underlying infection which has wreaked havoc with the whole body to throw EVERYTHING out of whack.

    My LLMD did say that over time with treatment, most of these things should correct themselves. So, Lyme and all the other infections and problems that are a consequence of Lyme, produce all the symptoms that some people call "CFS" or "Fibromyalgia".

    I already do not have many sx I had before. Fatigue is apparently the last sx to go, and I still have that, but it is much less and I have more stamina and there are only a few days in a month now where I need a nap during the day (maybe 3-4 times a month at the moment).


    [This Message was Edited on 08/28/2005]
  12. sickasadog

    sickasadog New Member

    I am beginning to feel the same way! So, I might have asked you this before, but I forgot. Are you going to a LLMD only to treat all your symptoms or are you going to a CFS dr as well? and does the LLMD treat only the lyme itself or the other stuff, like the EBV, candida, hormones, etc or do you have to go to a CFS dr for that??


    Thanks so much for all your input. BTW- a couple people from the board have told me not to rely on a positive result from Igenex since most people get positive results and it doesnt mean you have lyme, however according to others I know, many have tested negative and this is not true and according to the lyme board, this is also total you know what!!!
  13. dontlikeliver

    dontlikeliver New Member

    First, I do not believe that *most* people get positives from Igenex. I know several who did not.

    I go do Dr. Burrascano for my tickborne infections, and he did say early on that I may need antivirals. (however, I may not as I was negative for the CFS panel of viruses from MDL labs).

    DLL
  14. sickasadog

    sickasadog New Member

    I agree. Just curious, how come you are on a CFS board??
  15. dontlikeliver

    dontlikeliver New Member

    This is where I started out a few years ago (on this board) when I still had a dx of CFS (and believed it as I felt I had no reason not to believe that). Then in 2003, I was dx'd with Borreliosis, and have mostly been on the Lyme board since then.

    So, I come back from time to time to see what is going on and to see if I can help anyone.



    DLL
  16. sickasadog

    sickasadog New Member

    dontlikeliver-

    we appreciate it!