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Is Lyme Disease really just CFS?

Discussion in 'Lyme Disease and Co-Infections' started by Misfit Toy, May 26, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

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    The other day I went to my acupuncturist and she has lyme disease. For the most part, her herbs and treatment have really not done much. Because she is having a hard time with this thought, in her mind, I have Lyme disease.

    I have been tested like crazy for Lyme. Igenex and all of the previous Western Blot tests over a 24 year period and they always come back negative. No co infection or anything. Absolutely 100% negative. I didn't start having pain until my 13th year of being ill. For years I had perfect cognitive ability.

    I am so tired when I am not responding to something of people saying I have lyme, or all of my lyme friends thinking I have lyme. I have friends with Lyme who have been on ABX for 6 years and they are sicker than when they started.

    I really don't want the diagnosis, which my lyme friend explained the other day can be based just on symptoms. I don't want any ABX.

    Having said that, I am afraid I am missing something. I am not an in bed-housebound kind of CFS person. I work, get out, etc. I am not a high functioning person, but compared to many...I am out and about everyday. I also spend days in bed at times, but I can take care of myself. I drive, go to the store and last night I danced for hours at my friends. I usually do something everyday.

    Anyway, not sure what to think and it scares me. Don't know what to believe anymore. Thoughts? Even if I was diagnosed, the thought of the runaround with ABX freaks me out.

    I have heard twice in one week, "Chronic Fatigue Syndrome is really just Lyme disease." Seriously? It is? I thought Chronic Fatigue Syndrome was Chronic Fatigue Syndrome.
    Tito, Valentijn and merylg like this.
  2. golden

    golden Senior Member

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    Try a new Acupuncturist?
    The Spitfire likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    I know, right?! I have had horrible Fibro pain lately, so in her mind....I have Lyme. Bottom line, no acupuncturist can help this. I have gone for years off and on. The only reason I am going now is for my hormonal craze that is going on. It very much so helps my irregular periods. And, the other day it got me out of a full blown migraine and I still don't have it, but my "CFS" remains the same.
    golden likes this.
  4. golden

    golden Senior Member

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    I know. How can that be....



    Acupuncture is good in theory, as you dont need to know exactly what the problems are - a bonus since none of us really knows what the problems are!

    So there should be more success -

    I may give medical acupuncture a whirl now youve reminded me - for hormones thyroid and adrenals. :)
  5. Kina

    Kina Moderation Team Lead

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    Hi The Spitfire.

    I think people generally relate to others from their own experiences. Therefore, if she has lyme and you have symptoms like hers, then you must have lyme too. If you have come up negative for lyme on multiple tests, you unlikely have lyme.

    Chronic Fatigue Syndrome and Lyme disease do have overlapping symptoms but they are not the same illness.

    Bottom line, I think you have already answered your concerns here. You feel like you don't have lyme, you have tested negative, you don't want to take antibiotics long-term. Listen to what you are telling yourself. We are all pretty good at knowing what's best for us and what our limits are. Follow your heart.
    ggingues, Tristen, Valentijn and 2 others like this.
  6. Misfit Toy

    Misfit Toy Senior Member

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    It hasn't really helped my adrenals, but I know it can help the thyroid. It all over makes things a smidge better and I can sleep better. She gives me a sleep tonic that rocks. I strongly recommend someone who uses herbs that you either cook or they make them up for you in a tincture. I have done the pills and that helped when I had endometriosis, but it didn't help anything else. The tinctures and hardcore herbs that look like bark are what really does the trick. :thumbsup:

    Thank you, Kina. I appreciate it!
    Kina likes this.
  7. JT1024

    JT1024 Senior Member

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    Many patients on forums I participate in have tested positive for Lyme. I am one of them.

    While you may not have Lyme, you may have co-infections.

    After many years with FM/ME/CFS, I elected to be tested by IGeneX for Lyme and co-infections. I was also tested by another lab.

    I wasn't happy with what I found. I tested positive for Lyme, Babesia, Anaplasmosis, Mycoplasma, Chlamydia, HHV-6, and EBV. The physician that ordered the testing gave me several names of LLMD's that he recommend I see. I have not gone yet.

    Like you, I've been "high functioning".. and work full time. Unfortunately, the time has come where I'm barely able to work and I must follow through and see an LLMD. I'm not surprised at the diagnosis since my dog Chauncey (my avatar) also was diagnosed with Anaplasmosis, a tick borne disease.

    Chauncey passed away last October 30th and since then I've tried to focus on regaining my own health. It is an uphill battle - especially since I still work.

    One thing I recently heard is that both Dr. Cheney and another doctor in Seattle (?? Dr. Klinghardt) are finding that many of their patients if not all are positive for Lyme and/or coinfections.
  8. golden

    golden Senior Member

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    I recall Dr.Myhill stating there is no reliable Lyme test available. And thats obviously a big problem. Multiple negative results equals an unreliable test result as much as multiple positive results in my view.

    Of course there must be tons of other as yet unidentified virus that we all share and the key, as always will be in my mind , the immune system and ensuring it can function well.
  9. ukxmrv

    ukxmrv Senior Member

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    Lyme disease was an exclusion for CFS. That means it can't be CFS.

    I really sympathise with the Lyme patients who are fighting for diagnosis and treatment.

    Obviously it's more complicated than just saying it is an exclusion because we don't have enough research and we don't know enough about co-infections and how this all works.

    Unless your acupuncture person is doing an exceptional job I'd find another one.
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  10. golden

    golden Senior Member

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    I held that conflicting thought too which was when I asked Dr. Myhill.

    How can they exclude Lyme if there is no reliable test?
    vitamink likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    JT1024, I am so sorry and I am sorry about your dog. My friend with Lyme, her dog has it, too. I am also sorry that you have become so unwell.

    Yes, exactly to golden. There is no reliable test. That bothers me. As usual, another disease that is a bear to treat and no reliable test. I also feel so bad for those with Lyme. They are spending so much money on these LLMD's because many don't take insurance. Plus, the patient is sicker than a dog and herxing constantly. No fun!

    When I came up with a negative test across the board to any tick borne disease, I was told that I may have it worse so my immune system wouldn't show it because its so suppressed. I may have stopped fighting it. That scared me.

    Also, I can't believe Cheney feels that we all have Lyme. Geez.

    That doesn't explain how my roommate and I from college both came down with EBV in 1989 and we both are sick. It was February of 1989 and our spleens were huge. What a web.
  12. JT1024

    JT1024 Senior Member

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    Western Blot for IgM and IgG by IGeneX is supposedly better than tests performed at Quest., Labcorp, etc.
    Many tests for some Borrelia Bergdorferi antigens. From what I understand, there are now multiple strains of Borrelia. Also, patients test negative for antibodies until well after a tick bite and the bulls-eye rash. Some patients never test positive. Some only test positive after starting antibiotic treatment that forces the Borrellia out of the cyst stage and into the circulation - thus stimulating an antibody response.

    Co-infection testing is imperfect as well. Testing in many labs is for Babesia.microti only. I tested positive for B. duncani.

    What amazes me is how the "scientific" community has allowed poor testing for various illness to continue. I think it speaks volumes as to where their interests lie. Often scientists have vested interests in patents or companies so patients get left behind.
  13. Misfit Toy

    Misfit Toy Senior Member

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    Gosh, it's so confusing. I will talk this over with my doc, but he is convinced I have CFS and just that. He has done all of the Lyme tests. He is not a fan of antibiotics.
  14. ukxmrv

    ukxmrv Senior Member

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    I saw the video of the talk by Dr Cheney and the part where he said that his "CFS and Lyme patients were similar / same" (can't remember his exact words")

    I didn't take it that he thought the Lyme was causing all his CFS patients symptoms. There are lots of ways this could be interpreted.
    The Spitfire likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    I'm also completely negative for Lyme via Western Blot testing.

    I did live in an area where ticks carrying the disease were very common, and got bit by ticks dozens of times - including walking through a nest once and having 50+ of the little buggers crawling up each leg. But I never got sick at all while living there for two years.
  16. Ema

    Ema Senior Member

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    It's possible for the current Lyme testing to come up repeatedly negative while you still have a raging infection unfortunately. That's why it is a clinical diagnosis and testing is only one part of the picture. Hopefully some of the new tests being developed will be better in the future.

    My first Lyme test was suggestive of Lyme by the activity on various Bb specifc bands but technically negative. After 3 months of abx, my next test was flamingly positive. It was one of the most positive tests my doctor had ever seen. Antibiotic challenges of this sort are often clinically very useful in making a diagnosis of Lyme.

    That said, I don't think it is socially or professionally appropriate for someone to keep going on about a medical diagnosis if you have indicated that you are not receptive to hearing any more about it.

    If someone is taking abx for 6 years and is worse, I would suggest that they need a new doctor. Even the most aggressive abx protocols rarely last more than 18-24 months.

    I personally have vastly improved on abx and antivirals and am very happy I took them despite great reservations at first. I have no idea if Lyme was the only thing I killed or just one part of the profile but I am much stronger and more active now than I was before I took them. I also took a great probiotic for the entire course and butyric acid which may have helped my gut. I've been off abx now for a few months and things are going fine. Hopefully I can kick my immune system into gear and won't need them again in the future!

    Ema
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  17. cigana

    cigana Senior Member

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    My Lyme MD explained that you can get sick many years after the initial infection, because Lyme can hibernate in the body.
    Tristen likes this.
  18. cigana

    cigana Senior Member

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    I tested negative for Lyme until I was clinically diagnosed and treated with ABX, a few months after this I tested positive.

    I've heard it said many times by Lyme MD's that some people just don't test positive until after they begin treatment, and that's what happened with me.
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  19. snowathlete

    snowathlete

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    Often they don't bother anyway. They just ask if you've had a bulls-eye rash and if you say no, then they assume you dont have it. Thats an even more unreliable way to exclude it than using the official tests!

    I asked on a Lyme forum what the distinguishing symptoms of Lyme were, and the same list would not look out of place on here. Very hard to tell the difference. Everyone should at least have the basic test (unreliable though it is) before accepting a diagnosis of CFS.

    CFS could still be caused by a novel strain of Borrelia too. We don't know for sure. For now though, they are seperate diseases which can be difficult to tell apart. Also, no one should rule out the possibility of having both CFS and Lyme...
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  20. Hip

    Hip Senior Member

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    A while ago I was looking at both the Lyme and ME/CFS set of defining symptoms, to see if I could find any symptoms present in one disease that are not present in the other. Such unique symptoms will allow people to work out which of these two very similar diseases they have. This method of disentangling two very similar diseases is an example of a differential diagnosis.

    Most of the symptoms of Lyme and ME/CFS are the same, but there are some differences, so here is my brief Lyme versus ME/CFS differential diagnosis, to help determine which disease you have:


    Lyme versus ME/CFS Differential Diagnosis:

    Lyme often causes pain and swelling (fluid buildup) mainly in the large joints, most often the knees; however, in ME/CFS there is pain in the joints, but without swelling. (The joint problems in Lyme are proper arthritis, whereas the joint problems in ME/CFS are arthralgia).

    Lyme often causes muscle stiffness, especially in the neck. However, in ME/CFS, it is more transient muscle spasms (muscle cramps) that occur.

    Facial palsy (drooping muscles on one side of the face, due to paralysis) can occur in Lyme, but not really in ME/CFS.

    If anyone can suggest any more useful Lyme versus ME/CFS differential diagnosis symptoms, please post.


    Further Considerations:

    Of course, added to this differential diagnosis via symptoms, you also take into account the results of Lyme tests, which although not 100% accurate, are nevertheless another useful guideline to help determine the odds of you having Lyme versus ME/CFS.

    And of course you can take into account whether you live in a Lyme area or not. If you don't, this further stacks the odds against you having Lyme.

    And the classic "bull's eye" pattern Erythema migrans rash occurs in about 75% of Lyme cases, so if you never observed any such rash on your body, then again this increases the odds against you having Lyme.


    Some References:

    CDC - Symptoms - Lyme Disease
    CDC - Fukada 1994 Definition of Chronic Fatigue Syndrome
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