CFS lyme, mycoplasma, borrelia, HHV6 all connected ?

Discussion in 'Fibromyalgia Main Forum' started by babyk902, Jul 6, 2008.

  1. babyk902

    babyk902 New Member

    I've been really interested in the LYME topics lately only because I recently went back to my doc and he said my spirochetes were active again, and they had not been for the past two years, so I was pretty shocked! It made me realize, after doing much research, that they must have always still been there, never gone away, but just been "hiding" so I wasn't experiencing any symptoms.. I noticed on the med that my doctor gave me the ingredients are all types of Borrelia pathogens, along with mycoplasma, and HHV6.

    With that said, i think there is CLEARLY a connection between Lyme Disease and HHV6... which I thought had absolutely nothing to do with each other, as well as the mycoplasma. I thought that with CFS/Fibro all of these individual viruses or pathogens just somehow "coincidentally" all typically showed up in most people, so there is an OBVIOUS connection there.

    I'm starting to really and truly believe that maybe my CFS is not actually CFS, but LYME, or it was atleast triggered by Lyme... but is there anyone out there who has CFS that does not have LYME or any of these pathogens; borrlia, mycoplasma, HHV6?? Because that would probably lead me to believe that maybe CFS is just similiar to Lyme in some cases, and perhaps there are also other cases where some CFSers maybe just happen to have Lyme also.
  2. Bluebottle

    Bluebottle New Member

    This explains the link betwen them:
  3. bunnyfluff

    bunnyfluff Member


    I am glad you took our advice and looked into Lyme again.

    There are a lot of people, unfortunately, that have been told they have FMS/CFS without ever being PROPERLY tested for Lyme, it's co-infections, mycoplasmas, and toxic mold.

    All of these bacteria/parasites have cloaking abilities, so many of the ppl I have met have tested negative at one time, only to get a positive at a later date.

    There are lots of people out there that will never be able to get PROPERLY tested, and that is the part that makes me sad. Because without proper testing, you will never properly treat the demons you have making you so ill.

    Congratulations on the breakthru, and welcome to the "Die Lyme Die" club!!

    My best,
  4. marti_zavala

    marti_zavala Member

    He is a researcher in this field and he has had some good posts on this topic.

    ME/CFIDS/FMS is a syndrome when the body has triggered into a dysfunctional mode - regardless of the trigger.

    The trigger could be Lyme, EBV, CMV, ciguatera isotope, mycoplasma, chalmydia pneu, mold.

    If you catch it early, BEFORE you have triggered over, then you could take antivirals or antibiotics, etc and get PAST the infection. Then you are cured of that infection. If this happens, then it never was ME/CFIDS/FMS, it was CMV or Lyme or whatever the infection was. This happens everyday to lots of people.

    If you have triggered over and you are not well even though you have taken all the medication that is prescribed for the infection, then the condition is called ME/CFS/FMS with active co-infections (whether the co-infections were primary or secondary).

    Once you have triggered over, you immune system is not functioning, so you catch everything under the sun. Where it was first just Viral, now you could have myco, chalmydia pneu., etc. as secondary co-infections. It really doesn't matter whether they are primary or secondary, they are huge issues as is the now dysfunctional immune system, thyroid, adreanal, detoxification system, Kreb's cycle, etc. This doesn't mean that you don't keep looking for all the possible co-infections. And it doesn't mean that if you don't have Lyme today, you may not have it next year depending on your exposures to large groups of people. We have to be very active advocates for our health.

    Hope this helps.
  5. redhummingbird

    redhummingbird New Member

    I strongly agree with bunnyfluff.

    Also, one of my doctor's says that HHV-6 rides on the back of other viruses.

    I do believe there is a connection between all the above.

    I have been housebound for quite awhile now.

    I'm finally starting to show some improvement after addressing the lyme issues with antibiotics. I also have viral issues but trying to address those without addressing lyme was proving futile.

    For the first time in a long while I have hope that I will get some sort of life back.

    There is hope for us. We just need to find the pathogens responsible, treat them, and work on rebuilding the immune system so it can do it's job again.

    I think there are people out there that do have CFS without lyme.

    I think it's also important to get the right tests for all the pathogens in order to treat this thing.

    I no longer believe that I am doomed to live my live house and/or bedbound. Thank God.
  6. victoria

    victoria New Member

    lyme isn't caught by exposure to large groups of people, it's transmitted via tick bites -

    altho it's theorized that mosquitoes might be able to carry the spirochete bacteria and transmit via their bites as well...

    so maybe if you were in a group bit by local mosquitoes that were carrying it, you could get it...

    it's also theorized body fluids might also be viable transmission modes.

  7. victoria

    victoria New Member

    after reading about how biofilm can coat - what should I call them? - "societies" (?) of different organisms to hide from the body's natural defenses or medicines... I wouldn't doubt many are cooperating with each other...

    all the best,

  8. marti_zavala

    marti_zavala Member

    I stated that wrong - what I meant by large groups of people - various pathogens. Forgot that I had stated one particular one which is not transmitted that way.

    Sorry, little brain-fogged.

    As a side note: I used to be very concerned about what I could be giving people and never held a baby or visited with older folks. Then my mom said but what could they be giving you. I had never thought of it that way.

    So I do live carefully (not paranoid about it). I still don't like to hold babies but it is better now that I am on antivirals - I dont feel so contagious.


  9. cindyqt

    cindyqt New Member

    Just for anyone out there thinking of going the Lyme route, I did, and spent several years and lots of time and hope, coming out with no results. I had hundreds of meds and vitamins, antibiotics, bloodwork, and even PIC IV antibiotic therapy for 7 months given myself. Afterwards, I went to Mayo Clinic and was told that I did not have Lyme, that it was Fibromyalgia. What a waste of time and money, and hope of a solution. Even the physicians at Mayo said that I wasn't the only patient that they had come across recently that was diagnosised with Lyme. I am not educated on Lyme, but my doctor was from NASA and I trusted that we were on the right road. Wrong... Just be aware, before jaunting off on that diagnosis.

    [This Message was Edited on 07/09/2008]
  10. victoria

    victoria New Member

    Chronic Lyme is controversial if only because tests are so unreliable, plus the fact that spirochetes can penetrate tissue so well. Doctors can only go by the 'clinical picture', and even the CDC says that...

    Also, "Lyme" seems to have become almost a generalized word for all tickborn diseases, it seems to me, as that's all I mostly see referenced - when most who get it also get co-infections, one or more. Yet usually people only get tested/treated for lyme.

    &/OR don't get lyme but maybe one of the coinfections like mycoplasma, bartonella, etc... but tests for most of these are even more unreliable. Thus again the clinical picture is what's important in the end.

    95% of vector born diseases are caused by ticks. WNV/West Nile Virus is only about 2% of vector born diseases, yet what do we hear more about... pretty amazing.

    Most doctors would agree that medicine is still mostly an art, not a science, unfortunately, at least when it comes to the frontlines of treating patients. I know my daughter, who had a classic case of Rocky Mtn Fever at age 9, was still diagnosed almost too late -- even tho now there are more cases in the south, especially N. Carolina, than in Colorado!

    And my son has been CDC positive for Lyme 2X... had all my symptoms of CFIDS initially, then those that look like Fibro, but i got him tested..... what else is all involved comes down to looking at his symptoms for clues, sadly. For myself, I'm not sure what all I may have, but I know there are bacteria involved and likely also viruses for both of us.

    all the best,

    [This Message was Edited on 07/09/2008]
  11. Timaca

    Timaca New Member

    If you are experiencing multi-systemic problems (joint pain, muscle pain, nerve pain, cardiac issues, GI issues, etc); then get tested for lyme, HHV-6, EBV, mycoplasma pneumonia and chlamydia pneumonia to name a few possible tests.

    You can't tell the difference by symptoms because all the above pathogens can give the same symptoms.

    In my case, I believe lyme was the first thing wrong with I've gone on to have HHV-6, EBV, VZV, HSV1 and Cpn.
    Some other websites for info:

  12. frango2

    frango2 New Member

    After I was diagnosed I was tested for all viruses, bacteria etc., I tested positive for, or had re-activated EBV, CMV and hhv-6 or rather I had both a high IgM and IgG. These are very common viruses that we are all exposed to, but Lyme seems to re-activate them.

    IMO I think a combination of Lyme and a genetic predisposition to immune dysfunction is what causes the big cascade and decline in immune function that brings all this other stuff back out.

    Actually Lyme and its co-infections. I think Bartonella is the big nasty one that is causing immune dysfunction.[This Message was Edited on 07/09/2008]

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