How many have Lyme now

Discussion in 'Fibromyalgia Main Forum' started by grace54, Mar 4, 2008.

  1. grace54

    grace54 New Member

    I know there are some new people reporting they have Lyme and wanted to do a head count and also see if treatment is helping . Thanks:)
  2. momof27

    momof27 New Member

  3. mollystwin

    mollystwin New Member

    We are here to help! Let us know whatever you need. And there is a lyme board here too.

    Count me as a lymie.

    You really are a mom of 27!! God Bless you!!

    [This Message was Edited on 03/05/2008]
  4. zena01

    zena01 New Member

    I've had weird things all my life, just dealt and went on when in 2004 it all got worse after a stressful year and I was diagnosed with Fibro.

    After reading posts here On lyme disease I read the article "when to suspect Lyme" and a symptoms list, ordered a kit from IGeneX, got my doctor to sign for a western Blot with co-infections his lab sent it off and it came back positive for Lyme In December 07.....I saw my Lyme doctor for the first time 2/8/08 and they said that they feel I was infected at age 12 so I've had it for 35 years -- just been fighting it off with symptoms popping up here (20 years of colitis, chostochondritis, feet pain, and weird other things) and there all that time I guess when it "triggered" fibromyalgia in 2004.

    I'm now treating the co-infection Babesia for 4 to 6 months, then he said we'd start on the Lyme -- and that it would possibly be 18 months before I start feeling better when we start that. The thought of being this sick for 24 months scares the crap out of me, but at least I'm fighting something now.

    It seems the fibro articles rarely mention lyme, but the lyme articles certainly mention fibro. I do understand Fibro can be Primary, and that other things can "trigger" it, but it seems to be lyme is the biggie there.

    So many of the weird symptoms that didn't actually fit fibro for me are lyme, the lower body temp, weird sweats, joint and bone pain rather than just muscle, needing/being forced to sleep during the afternoon, the crawling being bitten feelings, fevers, and different type cognitive problems, so much more. Plus, fibros not supposed to be "progressive" and I've been getting worse weekly/monthly since i got diag with fibro. I remember telling my doctor my BONES hurt, my JOINTS hurt and him saying that Sherri, it's just the muscles, they go into your joints so it just feels that way......NOT! It really is my bones hurting, really is my joints hurting. Regular doctors just don't know about lyme here in Oregon -- They are going to have to learn, they all are, as it is "endemic" here in Oregon.

    Lyme is very political and financial, but they are not going to be able to deny it much longer.


  5. hopeful4

    hopeful4 New Member

    I have it! After nearly 6 years with a CFS/FM diagnosis, finally got the lyme diagnosis, with other underlying infections, imbalances, and deficiencies.

    I've been in treatment for about 2 years. It's more of a marathon than a sprint. I'm better. I'm finding that recovery is a work in progress.

    Well wishes,
  6. justjanelle

    justjanelle New Member

    Diagnosed with Lyme and Babesia in Nov. 2007. Currently treating the bebesia and am showing some improvement.

    Looks like I got mine around 1989 and the symptoms just gradually accumulated and worsened.

    Diagnosed with FM in 2003, and I'm hoping the FM symptoms are actually all due to the Lyme and will go away with treatment.

    Best wishes,
  7. bunnyfluff

    bunnyfluff Member

    I will tell you this, last year when a friend suggested that it could be Lyme, I said "no way!", I had been tested previously, and it was neg.

    She had Lyme, had been paralyzed from it, and came back. She knew all of the dangers. She said "try again, see my Dr."

    So, reluctantly I went, NEVER thinking that it could be me!

    But, it has been Lyme all along! They suspect that I got it 20+ yrs ago, maybe even as a kid, and all of the "weird" stuff that has gone on, including the sudden food allergies, was due to Lyme.

    I have been in treatment almost a year, and doing 1000% better than a year ago, when I thought I would be filing for LTD. I am back to work full-time.

    I still have a long way to go to be back where I was 10+ yrs ago, but at least now I know what to fight. My brain is SOOO much better than it was....that part is very encouraging...although I still mix up words.

    So, as usual, I encourage everyone here to get the Igenex test, and at least RULE IT OUT! Knowledge is power!

  8. grace54

    grace54 New Member

    you all finally got a diagnosis some after so many years.Not good that you have it but at least it is something that can be treated.I thought I had it but it doesn't appear that I have it as I am getting better on many levels. I wish you all speedy recovery with this serios illness. Thanks:)
  9. munch1958

    munch1958 Member

    Don't know how I skipped Ehrlichiosis?! So far I have 3 out of the many different kinds of bacteria ticks transmit. I also have high EBV, chlamydia pneumonia and candida.

    What I wish many would realize that if you've had the Lyme rash at any point in your life and now have symptoms of CFS, FM, ME, SLE, ALS, and/or (fill in alphabet soup diagnosis here)then you most likely still have Lyme.

    You don't need to pass go and you won't collect $200 but the Lyme bug is still hanging on! No testing necessary but it's nice to have it for confirmation.

    The Elisa test is worthless. You'd be better off flipping a coin. If you have any signficant bands showing up on your WB at all especially anything even an IND at band 39 you've had Lyme for a long time.

    I believe I was bit in 1969 at age 11 in the Ozarks. Shortly after this I developed a hand rash that didn't clear with hydrocortisone. I did clear up later on when I starting having ear infections and received many courses of Abx.

    In high school I believe I was bit again and had a series of 3 rashes on my leg. My old fashioned country type doc thought it was ringworm.

    I was bit again in 2001 and think that's when I picked up Bartonella. I was hospitalized for 3 weeks in 3 different hospitals and treated for anything and everything since they didn't know what was wrong.

    They decided it was sarcoid after doing a bronchoscopy and biopsy of the lymph nodes in my lungs. A high fever which I had at the time doesn't fit the pattern for sarcoid.

    Another hospital said it was epilepsy because by now I had facial seizures and numbness -- almost but not quite Bell's palsy. I now know that any kind of facial palsy following "flu" like symptoms is Lyme. As in any kind of summer "flu". After all they don't vaccinate for the flu virus in the summer!

    If you have any type of relapsing and remitting CFS you probably have Lyme. If you have FM that is not controlled by pain meds you probably have Lyme. If you have a stiff neck that snaps, crackles and pops it's probably Lyme.

    Not to be crude but the syphilis spirochete is the closest disease model that we have for Lyme. We know that syphilis can relapse at anytime in your lifetime. You have to be tested at 3, 6, 9, 12 and 24 months before being "cured".

    We also know from those awful hygiene classes in middle and high school that if you've got the chancre of syphilis (which is where the bacteria entered your body) then you have it.

    We also know that syphilis is transmitted horizontally and in breast milk. We also know that late stage syphilis can lead neuro psyche problems.

    Why doesn't all this apply to Lyme? Same thing different spirochete?

    Oh, I know....the IDSA tells me so![This Message was Edited on 03/05/2008]
  10. Poppy2

    Poppy2 New Member

    I was just diagnosed in Jan 2008.Also babesia and bart, I never would have thought I had it. I went to see a lyme Doc after I kept reading posts from lymers. I think all people with CFS/FM/ ME should be seriously tested for lyme
    Thanks Poppy
  11. victoria

    victoria New Member

    you'll see lots of familiar names if you scroll back, the lyme board here started in about 2006...

    Also from 2005:
    "Chronic Lyme disease is raising baffling scientific questions for clinicians and researchers. Patients are also confused since overlapping symptoms make it difficult to determine if they have CFIDS, FM or persistent Lyme disease. Here, one clinician and Lyme expert weighs in on the Lyme controversy."

    rest is at(copy & paste the following)

    if you go to llyme flash net also, you'll see lots of people previously dx'd with CF &/or FM who found they had lyme ultimately... plus other co-infections...

    [This Message was Edited on 03/05/2008]
  12. Chootik

    Chootik New Member

    Diagnosed about 1 1/2 years ago.

    Doing Zithromax and Malrone for about 11 months now.

    Doing better but not completely. Lately I've also been doing a yeast protocol and detoxing with a great product called "Pekana Big 3 Detox". This is helping me with my Lymph Clogging issues and detoxes the Liver, Kidneys and the Lymph at the same time.

    I'm also getting some blood work soon to see where my NK57 cells are and what should be the next step in treatment.

  13. grace54

    grace54 New Member

    I would like to keep this bumped so we can get a fairly accurate count and maybe someone can do the same on the Lyme board as to how many were diagnosed with CFS/FMS who finally discovered it was in fact Lyme. It will be interesting to see how many of us with these syndromes have Lyme or the co-infections. It should also be encouraging to others to get tested. Ok- Kill that Lyme now.:)
  14. tansy

    tansy New Member

    with neuroborreliosis, was part of the problem ie it's not purely lyme disease in my case. i think this applies to quite a few of us.

    i had m.e. for over two years before the bull's eye rash and classic acute sx; no one thought about lyme back then. last year a friend went through the same thing and the bull's eye rash; talk about deva vu. he's had two courses of abx and is doing well; it's much easier to treat in the ealry stages.

    though not the sole cause of my sx i know others who have been successfully treated for lyme. what is amzing is how many with other dxes have done well on lyme, and coinfections, protocols. lyme disease is referred to as the great imitator.

    tc, tansy
    [This Message was Edited on 03/05/2008]
  15. EricaCFIDS

    EricaCFIDS New Member

    I hope I get an answer! I think everyone should see one and at least rule it out or find out. I'm excited for the chance to learn more...... I will let you know!

    Thanks for doing this post. Everyone needs to at least consider this as a possibility.

    All the best,
  16. Slayadragon

    Slayadragon New Member

    The things that I know I have (or until recently had) are toxic mold poisoning, sky-high chlamydia pneumoniae, and pretty high HHV6.

    I also had a huge toxic purge when I began taking activated folate supplements and B12, suggesting that my body cannot effectively convert folic acid to active folate. (A nutritional test suggested the same thing.)

    My NKC counts are/were low, as is/was my NKC activity. My Rnase-L is high, with a lot of LMW Rnase-L. I also have/had a high level of interferon alpha (another measure of viral activity) and a high amount of apoptosis (a measure of cell death).

    For a number of reasons I think that I have lyme, but that it probably took hold after I was already sick due to my system being messed up with all that other crap.

    I never have had a lot of symptoms specific to lyme. I've gotten a whole lot better merely by removing myself from the mold toxicity and detoxing the mold poisons and other toxins. This makes me think that the lyme has been secondary to the mold poisoning and other components of my illness.

    (Admittedly, the things that detox mold poison are the same ones that detox lyme poisons, and so I could be getting some of those too.)

    My doctor thinks that lyme tests are too inaccurate to bother with and thus has stopped using them. He now treats based on symptoms and reactions to antibiotics. (For what it's worth, I had all bands negative on several Western blots done up until a couple of years ago. I didn't do the IGeneX, again because my doctor thought it was too unreliable to give useful info.)

    I had a huge die-off reaction a number of months ago to a small amount of doxycyline and then to a tiny amount of minocycline. This could have been a result of cpn dying off, but some problems with my vision (sparks, shooting stars, floaters, dimming of light) just after I took it makes me think it's more likely lyme.

    The fact that my die-off symptoms were all emotional/cognitive sounds more like lyme than cpn too....which is not to say that cpn die-off didn't make it worse.

    I didn't have this kind of die-off to minocin when I took it earlier in my illness for mycoplasma. This contributes to my belief that lyme is an add-on to my underlying illness (e.g. mold poisoning followed by viruses) rather than the original and most important cause.

    Cheney says that the internal environments of CFS sufferers lend themselves to the easy proliferation of yeast, lyme and cpn. Once those things get in, it's hard to get them out, he says. That sounds right to me.

    Still, it's my understanding that there are different strains of lyme, some more vicious than others. And certainly, the "co-infections" seem particularly vicious. It thus seems to me that it's possible to have lyme be a secondary part of the illness....certainly something to treat, but not necessarily the first or the most important thing.

    My belief is that once I detoxify some more of this various crud out of my body, my immune system will become strong enough to work more effectively with the doxy/minocin, thus giving me less die-off. We shall see.

    In any case, I think you can count me in the "club."

    Hopefully my experience will suggest to others that lyme could be at least a small part of their problem even if it doesn't show up on tests or even if they don't meet the official criteria on lyme symptom lists. Considering all the possible factors wrong with us and then deciding how and when to treat is a key to getting well, I think.

    [This Message was Edited on 03/06/2008]
  17. Daisys

    Daisys Member

    I thought I had CFS from 1978 on, and FM from 1986 on, and about a year ago, I was finally diagnosed with lyme.

    I have noticed that the CFS/FM boards generally don't mention lyme, but the lyme boards are full of people who have been diagnosed with FM and CFS, along with lots of other diseases.

  18. victoria

    victoria New Member

    that is where you'll find them... also keep in mind the likelihood of 'just' having lyme alone is pretty slim...
  19. Slayadragon

    Slayadragon New Member

    Maybe all CFS starts out as lyme or mold poisoning, with all the other stuff occurring as complications from that.

    In that case, one would not say one had lyme rather than CFS. It would be the same thing.....a subset of CFS.

  20. mollystwin

    mollystwin New Member

    I became sensitive to mold only after I became ill with Lyme and all my other issues.

    Once I had my candida under control this sensitivity is much better. All my allergies are better too. Before I couldn't even dust or vacume without getting very ill.