?'s for those diagnosed with Lyme after being diagnosed with FM..

Discussion in 'Fibromyalgia Main Forum' started by sweetbeatlvr, May 31, 2008.

  1. sweetbeatlvr

    sweetbeatlvr New Member

    or CFS.

    i've been reading alot about how many people have been diagnosed with Lyme after being diagnosed with CFS or FM. the numbers are quite staggering.

    of course i can't help wondering if i could possibly have it?

    my symptoms (i have FM) did not get in to full swing until a week after my hysterectomy last year (although i've had unexplained joint pain since my early teen years).

    i was curious how everyone else's symptoms started?

    they say that FM can happen after a trauma to the body.

    did anyone else who was eventually diagnosed with Lyme, have symptoms that started after a trauma to the body?

    can Lyme lay dormant until something "triggers" it to be full blown?

    i've had the Western Blot test, which was negative, but have been reading how that test is not very reliable.

    i'd appreciate anyones input on this.

    thankyou very much.
  2. victoria

    victoria New Member

    In fact it's been demonstrated that some can definitely have it, yet no symptoms. Symptoms seem to be pretty much determined by the mix of infections transmitted by ticks, whatever other viruses you might have, plus one's own genetic susceptibilities. SO -There is very much an overlap with lyme and other infections transmitted by ticks, and there are lots of those.

    There is a lyme board here, if you look up above at the purple board, 2nd from left is 'message boards' - click on it, then click on 'lyme' - we have LOTS of info there!

    There are other infections to consider as well (viral/bacterial/genetic), there's a post here about other diagnoses to consider that we've all contributed to... I'll bump it up to the first page for you...

    all the best,

    [This Message was Edited on 05/31/2008]
  3. bunnyfluff

    bunnyfluff Member

    was Lyme all along.

    Yes, it can be "activated" after years of lying dormant. I cannot tell you when or where I was ever bitten. It can be passed congenitally and sexually.

    You can get it from mosquitoes, fleas, spiders, chiggers, etc., and most ppl get it from the nymph stage, not a full blown tick. The nymph is the size of the period at the end of this sentence. <<<<

    I started getting symptomatic, from what I can tell, after my hyster.

    There were periods prior, that I had unexplained depression, etc., and so many things that you just don't put the pieces together that it is one thing taking you down little by little.

    For your own piece of mind, get the Igenex western blot (important!!) to rule this in or out.

    Lyme can be treated, and many get remission. I will not use the word *cure*, b/c it is pretty stealthy. Please visit over at the Lyme board.

    There are some clear cut sites as well for info.

    There are lots of ppl to help you get some answers.

    Thanks for asking the question.
  4. justjanelle

    justjanelle New Member

    I had a bullseye rash 18 years ago, but wasn't treated. Although I had a gradual onset of fatigue during the following several years, it wasn't until I had an emergency surgery 6 years later that I suddenly crashed. And then 8 years later before I got a FM diagnosis, and just last fall I was finally diagnosed with Lyme.

    The doctor who's treating my Lyme disease says virtually all the Lyme patients he sees have previous diagnoses of FM, CFS, MS, RA or Lupus. He says when the Lyme-infected person is under higher-than-normal physical or mental stresses it decreases the ability of their immune system to keep the Lyme in check -- and therefore the Lyme bacteria grow like crazy and the Lyme-related symptoms do too.

    In spite of the long time I've been infected, I'm beginning to see some improvement in my own Lyme symptoms after 6 months of treatment.

    Best wishes,
  5. Debra49659

    Debra49659 New Member

    funny FM moment, i was reading through some of the new posts, came across your screen name and just for an instant thought the abbv in your screen name...would read as "sweet beaver lover"! K...i needed a laugh and now i am going to let you get back to important posts!!

  6. gapsych

    gapsych New Member

    My suggestion is that if you want to know more about this subject, to go to the Lyme board. There is a wealth of information there.

    Yes, lyme disease can be diagnosed as FM/CFS. But so can a lot of other conditions. That means it can be a tricky diagnosis to get.

    It does not hurt to get a lyme test. Unfortunately, there is some disagreement of how to interpret the tests and whether you can go by symptoms alone. The same symptoms can have a lot of different causes.

    Long term ABX treatments can have extreme side effects.

    So it is important to get a medical doctor, perhaps an infectious disease specialist, to get the test and be able to determine if this is indeed the cause or one of the causes of your FM/CFS.

    Both the tests can be difficult to interpret.

    That being said there have been a lot of people who do indeed have Lyme. Author Amy Tan was diagnosed with Lyme.

    I guess the bottom line is to be well informed about this subject and realize the Lyme disease MAY be one factor causing our DD.

    Well worth it to investigate this to get a whole picture of what is going on.

    Take care,


    [This Message was Edited on 06/02/2008]
  7. sweetbeatlvr

    sweetbeatlvr New Member

    for taking the time to rspond to my post.

    i definately have/had way more than 20 of the symptoms on the checklist for Lyme.

    it is so frustrating to feel so awful, and not *really* know what is wrong with you!

    i am definately going to arm myself with information, and bring up the possibility of Lyme to my Nurse Practioner (who is wonderful). i know she will take me seriously and atleast look into the possibilty.

    the Igenex test... it's really expensive isn't it? i just don't know if i can afford it.

    again, thanks for your thoughful replies, i really appreciate it.

    and to whoever posted about my screen name (sorry my memory is poo)... lol, you aren't the only person who has made that faux paus, while seeing it. i've had it for so long though, that i don't want to change it.=)
  8. Rafiki

    Rafiki New Member

    You wrote:

    "You can get it from mosquitoes, fleas, spiders, chiggers, etc."

    Yikes! Can you point me towards more info.? This changes everything.

  9. victoria

    victoria New Member

    should be done by IGenex, a fully certified & accepted lab, that specializes in lyme. Altho they're the best, accuracy is about 70%...

    The CDC requires a certain 5 bands for their tracking/surveillance purposes. Even they on their own web page about Lyme says not all 5 of these bands need to be present, and the dx of Lyme SHOULD be a clinical diagnosis, not just based on a blood test.

    It has also been shown over and over again that it can go intracellularly, meaning INSIDE our cells, even inside our white blood cells, and in various tissues of the body.

    It can also form cysts to hide out against abx or the body's immune system ad infinitum. It's not the only bacteria that can do this by the way - e. coli can too.

    There's also a bunch of co-infections that can be transmitted by ticks, either along with lyme or by themselves... they are near impossible to test for, but include mycoplasma, tularemia, babesiosis, and bartonella. Again, these can go intracellularly.

    95% of vector-born disease (meaning, insects) is transmitted by ticks... less than 2% of vector-born disease is West Nile Virus. Why do we hear more about WNV every year, it's insane! I don't know anyone who's had it, altho I'm sure some of you do... but I DO know people who have had it or a relative has had it, and I live in Georgia where Lyme's officially rare... it's just that people cut corners and don't get tested at least for acute cases.

    My family's one that has really been touched by ticks - my son came up 2X with all of the 5 bands required by CDC for tracking purposes, pretty rare actually, and would've been missed if I wasn't aware of lyme's 'masquerade' abilities ... My own response to treatment on the marshall protocol included herxes, which is what really gave me the heads-up when my son was rapidly going downhill at 16. And, my daughter had Rocky Mtn Spotted Fever which was almost missed too, ended up in ICU for 10 days with only a 50/50 chance given in the beginning. My daughter's BF has had Lyme or tick infection too, before he met her - didn't find out until his vision blurred! Likely my husband has 'something' too, given his many/varied unexplained symptoms.

    At any rate, everyone will do themselves a service by looking into the possibility of any/all of these 'stealth pathogens' that can hide out in our body's cells etc.

    Lyme isn't the only one, keep in mind, there are a lot... a whole new world for science to explore, but I'm not sure they're exploring it fast enough!

    Guess they'd rather spend the $$ on going to Mars...

    [This Message was Edited on 06/02/2008]
  10. bunnyfluff

    bunnyfluff Member

    Lyme disease: Not just deer ticks.

    American Health 1989 June by Hamilton J

    Preliminary research shows that Lyme disease is not only transmitted by
    white-tailed deer ticks (Ixodes dammini), but also by other ticks and animals
    such as raccoons, opossums, dogs, rabbits, horses, cattle, migrating birds as
    well as mosquitoes and flies. Lyme disease is now found in 43 states. (actually now all 50)

    Wildlife biologists apparently contracted the disease without being bitten by a tick,
    but possibly by handling infected slain deers' blood. Owners of horses or cows
    could possibly become infected by inadvertent contact with urine. Cats may
    acquire the disease by eating infected mice. Fleas that bite infected pets can
    pass the organism on to people.

    In California, more than 400 people have gotten
    Lyme disease after being bitten by another type of tick, the Ixodes pacificus
    found on birds, lizards and rodents.

    In Europe, the disease has been spread by
    biting flies and mosquitoes. (so lets assume the same hold true everywhere)

    Researchers say that you can get Lyme disease
    without ever getting the typical bull's-eye rash. Other symptoms include
    flu-like symptoms, severe headaches, muscle pain, facial paralysis, or
    recurring arthritic symptoms. A blood test that detects an antibody to the Lyme
    bacterium can be performed.

    If Lyme disease is diagnosed early, it is easily
    cured with antibiotics. If caught later on, intravenous antibiotics may be
    needed. Here are some preventive measures you can take: Find out if Lyme
    disease is endemic to your area; when walking in wooded areas, wear long
    sleeved shirts and pants tucked in your socks; if in a high risk area, use an
    insect repellent that contains DEET (N- diethyl-metatoluamide);

    remove any
    ticks on your skin immediately; make sure pets have flea and tick collars;
    avoid any animal's blood, urine and feces.

    "Lyme disease: Its neurologic manifestations and its presentation in
    Michael Finkle, MD, Eau Claire, Wisconsin
    Wisconsin Medical Journal, July 1986: Vol. 85

    "Lyme disease is a name used in the United States to describe the human illness
    caused by a tick-borne spirochete It is a multisystemic illness with multiple
    postulated mechanisms of pathogenesis.

    It occurs GLOBALLY, has a plethora of
    presentations, and has many different vectors. There is no internationally
    accepted name for the illness. It can be described as a vector-mediated,
    spirochete-induced, meningoencephalomyeloradiculoneuritis with
    dermatocardioarthritic complications.

    It is important to Wisconsin residents
    because our state is an area of recognized concentration of this illness....
    ".The Lyme illness was not recognized in the United States until the
    1970s. The first case of tick induced ECM was reported in Wisconsin in
    1970......Lyme disease has been recognized more broadly in the United States
    after the variable nature of the illness was realized.

    Multiple locations have
    now been discovered. In the Midwest the majority of the cases have come from
    Wisconsin and Minnesota. It has been found that the illness can be transmitted
    by multiple American tick species.....During the past few years, the illness
    also has been more globally recognized with cases being reported from
    Austrailia and South Africa.

    The region of Austrailia where the cases have
    been found does not have the tick vector, and therefore another vector for the
    spirochete must be present. Cases also have been reported from the tick-free
    areas of Sweden, and it is postulateed that the vector for these cases may have
    been mosquitos.

    Doctor Elizabeth Burgess at the University of Wisconsin
    Veterinary School has demonstrated that tick-free seronegative dogs will turn
    seropositive if housed with tick free infected dogs.

    Doctor Burgess also
    cultured spirochetes from the blood of tick-free seronegative field mice who
    were exposed to infected field mice. This demonstrates that the spirochete can
    be passed among the natural reservoir without the intervention of the

    Hope this helps,

  11. buttercakes

    buttercakes New Member

    I am just one of the many diagnosed with FM and CFS many years ago. 1/08 I finally was properly diagnosed with Lyme disease using the Igenex test.(evenCDCpositive)I am now being treated by a Lyme disease doctor and slowly recovering. good luck, Sandie
  12. gapsych

    gapsych New Member

    Are there any statistics of how many people who have been bitten actually get Lymes disease?

    Could that mean there is something else going on?

    Not to downplay Lyme at all, but why do some people get it and other's do not.

    Is there something you can put on your skin like Bug Off that will prevent tick bites.

    OMG, mosquitoes!!!!!

    But I love the outdoors!!!!

  13. bunnyfluff

    bunnyfluff Member

    You can use DEET. That's about it.

    Since there is no "real" statistics on Lyme, thanks to IDSA & the CDC, we just have to do the best we can.

    My husband has been bitten numerous times by ticks as a child. He has tested positive, but doesn't have the joint pain, etc., like I do.

    He has B-12 deficiency, sore feet, and flushing on 1 side of his face only (like you drew a line).

    My daughter is CDC positive, and has recurring EBV, and extreme fatigue. My son has headaches and knee pain.

    I got the sickest, and I'm not sure anybody knows the rhyme or reason to it. I never recall any bite (besides mosquitoes, which seem to love me!)

    I think I passed it to my kids thru breast milk. *sigh*

    There just needs to be due diligence in getting proper testing. I also have mycoplasmas. I think my lyme treatment will kill that as well.

    But until a year ago, no body "bothered" to test me for any of this.


  14. buttercakes

    buttercakes New Member

    Thats awful that you and your whole family have lyme, one is bad enough. Are your kids being treated? Your medical bills must be ungodly. Sandie
  15. victoria

    victoria New Member

    deer ticks are so tiny that they are easily missed...

    so caution - don't hug any more trees, anyone; or sit on logs (1 study found the highest number of ticks were found on logs/trunks).

    Or walk thru high grasses unless wearing shoes with your pants tucked into your socks, plus a hat, light clothing (attracted to dark clothing!)... and yes, DEET is likely the best repellant.

    But even then you can just walk under a tree and have one drop on you. They are heat-sensing.

    Sandie, it does usually occur in clusters, makes sense really as it gets passed around thru the wildlife in the area. My whole family's got problems to varying degrees too.

    all the best,

  16. gapsych

    gapsych New Member

    Okay, this is going to sound realllly dumb. Are ticks the bugs that swell up from sucking your blood?

    I think I remember someone saying to never pull one out as their legs remain in your skin.

    All I can say is ewwwwwwwww.

    Sad consequences though.

  17. victoria

    victoria New Member

    GA, There's been so much talk about lyme and being careful about removing ticks, even from dogs, there's been an ever-increasing awareness and education movement in the media nationally... especially in the spring/summer.

    here's an excellent site that tells you what to do/how to do it, and what you can do to help prevent ticks from getting on you in the first place:


    Everyone should look at this... I often get emails from friends who pass on old folk tales about how to remove ticks...

    So, thanks for asking the question, great opportunity to educate you and others who may not see them often if they live in cities...

    [This Message was Edited on 06/05/2008]
  18. Doober

    Doober New Member

    But I have been bitten by a few ticks in my lifetime.

    My symptoms did not go into full bloom until about 4 years ago after knee surgery to replace my ACL and remove some damaged miniscus.

    My ACL replacement was supposed to be done with a piece of my hamstring. Afterwards a few days later of laying at home, I noticed that the only scars I had were from the knee surgery and no hamstring was removed.

    I had a cadavar ACL put into my knee and I think that this is what caused me to be affected the way I am. Not sure if body continually fighting the "Foreign" object in my body? Or it was just a coincidence between the 2.

    I also have many years of other things I have had happen to me that would just compound over the years to bring me to the point I am.

    I have had the LD tests done and of course they were negative.

    I also barely use bug repelant spray and get bit by many bugs still to this day. So I may be getting something from them as well. Will be asking my Rheumy for another LD test on my next appointment because I see so many people here have them done so long after their first one and the results change.

    Maybe this is because the testing methods are better now or just that the body is producing the antibodies or other cells at a higher rate?

    Some day we will have the answers.
  19. bunnyfluff

    bunnyfluff Member

    The cadaver could have had LD. They don't check blood, etc. If the person that died didn't know, no one would ever know.

  20. bunnyfluff

    bunnyfluff Member

    Actually, our insurance pays for everything.

    Abx are cheap, the suppliments are probably the highest $$ amount. We paid out of pocket for the Igenex tests, although I probably could have turned those in as well.

    It is nothing compared to the years of lost productivity I have had from my (high paying) job. I just want to get back to where I was, and put all of this behind me.

    And yes, I am doing well most days. Nothing really to complain about, whih is a 180 from last year at this time.