Lyme is as difficult as FMS???

Discussion in 'Fibromyalgia Main Forum' started by Applyn59, Jun 10, 2003.

  1. Applyn59

    Applyn59 New Member

    Lyme is as difficult as FMS???

    Hi everyone,

    I have recently started to research just a little bit
    about FMS and am corresponding with a Lyme
    patient. She was very helpful but one thing does
    annoy me. She said she wrote "fibromyalgia"
    in quotes because she doesn't like it's diagnosis
    because it means muscle pain and doesn't
    explain anything. She thinks it's from a virus, etc
    and therefore has problems with the diagnosis.
    Okay, now that I am writing this, I am not annoyed
    because she just thinks they should find the
    underlying cause. (Should I erase this message
    after all this typing -NO).

    She stressed that I should see a lyme specialist
    because no doctors take lyme seriously or know
    how to treat it!!!! Great, just what we need to
    investigate, another difficult diagnosis. She said
    if you want to be tested that lyme specialists are the
    best because they know everything and run tests, etc that regular drs don't run. She was also quite
    upset that I was never tested since I live in the
    prime area of disease.

    Those who have been diagnosed with Lyme, have
    you found getting a diagnosis or having your dr.
    test you for it difficult to do?


    [This Message was Edited on 06/10/2003]

  2. kerrymygirl

    kerrymygirl New Member

    I have had negative and numerous positive tests for lyme. Been told by 2 specialist, going over history etc. they have no doubt I have lyme. I worked in a research program with Dr. Whittaker, she has a website,lyme herself, plus more degree`s than I have seen in along time. She spotted the sphyrochete under micro in her tests. It hides deep in tissue and moves,plus keeps mutating. Also aggrivates cytokins which then give off toxins in body.

    I am not well and very tired so I may have to continue some of this at another time.

    Our Govt. for some reason has covered up and closed alot of labs and clinics revealing the dangers of lyme. Not sure exactly why, some has to do with touriam. It can do alot of damage and has destroyed entire families live. It also can be passed dowm to children and deaths of children some times lose the fight and die. There was a whole program on this once.

    Here is the problem, treatment of advanced lyme is very controvercial. There really only 2 reputable labs left for correct test, it is expensive,many ins, will not cover.

    If you get on doxy when 1st bit,chances are good. If not the jury is still out if long term anitbiotic will cure. This is a huge debate. For some it helps, others, just keep slipping back since they are all guessing, just like with fm/cfids/etc. Once again guinea pig sit. It depends how long also. It can be very destructive to organs and brain.

    There is also lymenet chat rooms. My insurance right now doe`s not have a decent lyme doc. so I am not gettting treated and my doc, just doe`s not want to discuss fm or lyme.

    Maybe you can do a search, I am sure in your area there are good doc`s, since this was the 1st state. Now every state but 1 has lyme. If they would not have put this on the back burner that might not have happened.

    I am not sure if I am making any sense,please excuse just plain feeling bad.

    The symptoms are alot alike,because after awhile test are not reliable it is diff. to know what to do. Nightline did have a program on it and not 1 person agreed. Some tried to hide the fact that advanced lyme exists. There is proof. I have seen it and much more prevalent than anyone knows or acknowledges.

    I say if you have a gut feeling go with it!!! Hugssss

    Good Luck, maybe I can help you more later. I have heard and saw alot at the clinic. I know it is frustrating!!!!
  3. Applyn59

    Applyn59 New Member

    You so much for taking the time to answer me.
    I really appreciate it. You know, I never thought
    to be tested for lyme because I thought you had to
    see the tick bite and or bull's eye rash. I have recently
    been concerned about hepatitis because I have
    two instances that I know of where I could have gotten it. In speaking with a CFS/FMS advocate, she told
    me to definitely be checked for Lyme, too.

    My cousin had lyme disease and then FMS. I don't
    see her much but from the few times I have seen
    her, she just said she went on antibiotics and it was no big deal. She must have caught it fast. She is far
    better off than I am. I have been bedridden the past
    year so I know how difficult it is for you to respond
    when not feeling well. If I didn't have a laptop,
    I wouldn't be online much at all.

    I have joined lymenet to try to get various names
    of drs, etc. They are all very far away and I can't
    drive and the trip itself would kill me by the time
    I got there!

    I would like to investigate first with a dr. in town.
    I don't know. I am doing this slowly. I don't
    know whether I think I have lyme, I just believe
    I should get it ruled out.

    I appreciate your taking the time to help me.
    Take Care,
  4. TaniaF

    TaniaF Member

    Which states are more indicative to have ticks that cause Lyme? I live in Florida. Not sure if there have been any cases there?
  5. kerrymygirl

    kerrymygirl New Member

    I did not notice a tick. They are no bigger than the size of a top of a pin. Not everyone gets a bullseye rash. I was in Fl.,St Andrews state park when a deer came up to my daughter, we petted it. She ran a 2 day high temp. Then was fine. I think it is showing now she is in her late 20`s. Total denial though. I came home and felt ill lots of bites, I swell up from any type,even from mosquito. So at that time lyme was not even considered. I ended up in hosp. for 10 days. Never quite felt well again. 5 doc`s all scratching their heads around my bed. I had viral meningitis, no antibiotics. I almost lost my sight still have problems today. They were not sure if I would live,I am so stubborn waited almost 1 week to go in. They had me in hosp. set up for a spinal tap within 15 min. It probably saved my life. I was almost sure I have meningitis,P.A. background. Should have known better do to what I went through that wk. Even went out and tryed to cut lawn after a horroible night of temps,headache,stiff neck,nausea. I made 1 swipe of lawn & said I think I need to see a doc. I just hate giving in.

    For myself it has been a slow progression. I agree with Betsy not sure which came 1st. I did have minor fm signs as a child. So My thought is it triggered my fm &cfids. Plus I was under alot of stress. Which just added to fm trigger.

    I am progressivly becoming alot worse. I hardly have 1 decent day. I fought it for so long and now I just am not sure what to do. Very sick & very tired,

    I did Dr. Whittikers bowen treatment and I did find some added energy. Was in test study. Just cannot afford now. I have spent so much on trying to get well.

    They have brought in lyme ticks to our clinic from the beaches of fl. There was a news cast by a lyme doc. who said if you doubt there is lyme here in fl. think again.
    Think about it, people come with their pets from all over. Dogs carry the lyme tick too.

    I wish I could go to the 1 Lyme doc here, he is ill himself and dropping pts. He cannot accept new pts. He did speak with we at fm meeting also said I had lyme after an hr, discussion, I would love to go to him. Though I hardly drive anymore and live alone. So if you can find a good lyme doc, and I mean a good 1. It is diff. to diagnose & treat. Need close supervision, Especially due to all our problems. I also have dysautonomia. When I had surg. on hand doc said he never saw tisssue quite like mine a 20 min. procedure ended up over 1 hr. Poss sclera,Yikessss

    Try to obtain your history as much as you can recall or start keeping journel also. Huggsss Good Luck
  6. Applyn59

    Applyn59 New Member

    For all the insight. I will look into those labs,
    Betsy. I don't see why is should be so difficult
    to get one of my drs. to test me. I think it should be
    ruled out.

    My best friend just emailed me. She kind of scared me
    because she said she was doing land inspections
    and when she woke up she found a tick stuck
    to her skull. She went to her dr. who couldn't tell
    if it was a deer tick so he gave her antibiotics
    for three days. I don't know if he even tested her.
    She said she had ticks all over her clothes!
    Shouldn't she be tested for lyme even without symptoms. We are talking about CT, the lyme
    disease capital of the world!

  7. Applyn59

    Applyn59 New Member

    The lab sites just make me more and more
    confused. I better choose the smartest of my
    drs. to discuss this with!!!

  8. kerrymygirl

    kerrymygirl New Member

    I am almost shocked being in the lyme capital, even though I should not be shocked by anything from doc`s today. Due to all my poor and misdiagnosed treatment. She needs atleast 21 days. To be safe a month early treatment is the only prevention of what people like Betsy and myself and poss. yourself are going through.

    Try to encourage her to get to a good doc soon. You too~
    Let me know how you are doing...
    [This Message was Edited on 06/12/2003]
  9. Applyn59

    Applyn59 New Member

    Thanks for your responses. I am beginning to think
    I might be better off trying to get to a real lyme
    dr. I guess I am just wondering if I am crazy to do this
    since I don't ever recall being bitten - seems as though
    that doesn't matter though.

    Upon further questioning, my friend said that the dr.
    didn't think the tick looked like a deer tick. Can't it
    be other ticks anyway?? She said he thought he
    was overtreating her. He gave her 3 days of
    100 mg doxe. She said he just looked at the tick
    and that's all. He didn't look at her skull!!! This
    sounds ludicrous. This is just her regular dr.
    She doesn't get all riled up over med stuff the way
    I do because she doesn't have all these health
    problems. I am concerned about her because
    she won't do the research. Her sister is a dr. in
    CA so I am hoping she talks to her about this and
    see what she has to say. Isn't it irresponsible for
    the dr. to not even send the tick for testing?? I don't
    think he did but am not sure.

    Thanks for the advice.
    She would be the one who might have to drive me to
    a dr so maybe we could go together!!! Is lyme
    contagious?? I haven't read that far. My head is
    spinning from all the health issues I want to
    check into.
  10. kerrymygirl

    kerrymygirl New Member

    There are possibilities to pass it on to children if you have it when pregnant. My daughter just told me she is pregnant and total denial about her lyme or fm. I am concerned. There was a program on lyme 1hr. on learn channel. Whole family infected. Her child they told her she could not pass it on to baby, died at age 10 of lyme. It was so sad they spent over 1/2 millions $$$. No one got cured, lost their home child and they were quite well off at 1 time. Now no 1 is well and no money left. They tried to speak about all the lies and cover-ups. Mainly do to govt. and protection of tourism, other politics that were not revealed for some reason.

    I do not believe it is contagious, but the question of passing it through sexual contact was brought up. Plus passing it on through pregnancy. Not in normal contact unlees that is something else we will learn. My doc refused to send my info & lyme results to cdc. I dropped him.

    Many patients in our clinic we found they had lyme when thinking they just had fm. I do not mean just fm that is bad enough.

    My lymph nodes are in constant battle that is not a fm thing. I get quite ill when they are flaring. Hello Doc!!
  11. Applyn59

    Applyn59 New Member

    My main concern with the contagious question is that
    I live with my mother who had chemo and radiation
    last year.

    I am single and childless so that isn't a concern now.

    I do definitely plan to follow up on this. I just need to
    find the right dr. I assume that the LLMD have long
    waiting lists.

    These dr's don't even take insurance for the first
    visit?? Or do u mean for the treatments???

    I was looking at the websites for labs and have no
    idea what to order so I think I need to find the
    right dr.

    Thanks all for your advice.

    I am sorry you all have this.
  12. Applyn59

    Applyn59 New Member

    I didn't know I was opening such a can of worms.
    Why is it that nothing is easy. Everyone who has
    emailed me about lyme from various places have
    all said how difficult it is to get diagnosed and treated.
    I had know idea. And then to hear that it is being
    covered up. And YES, in CT of all places!!!!! It's
    just terrible. I really innocently started this thread thinking all I had to do was ask my rheumy. Now,
    I don't know for certain that I was not checked for
    Lyme, but I am 90 percent certain. I guess I will
    call. I originally went to him due to severe allergies and asked him to confirm my suspected case of FMS.
    He confirmed it. To my knowledge, I don't think he
    ran blood tests. I don't have any in my possession.
    A few years before I saw him, my chiro ran ANA
    to check for lupus and RA, etc. I was not nearly
    as sick when I first was diagnosed as I am now.

    My rheum. doesn't run blood tests unless I beg
    him for something. I don't think he is super
    great so I doubt I would get anywhere with him.
    My PCP I have only seen twice. She treated me
    like a piece of furniture and I was not pleased with
    her. I am now on a waiting list for a really good and nice dr. who was recommended by another dr whom
    I trust implicitly. That won't be for about 6 months

    Thanks again for all the info. I have so much literature
    on my computer that I have downloaded on hepatitis
    and lyme and it all gives me a headache. I don't
    need these added worries but I do think more should
    be ruled out.

    Isn't if awful how we really have to be our own
    dr.s in a way. I want a personal doctor manager!!!

  13. kerrymygirl

    kerrymygirl New Member

    It seemed so simple then. He did not run any big fancy test. What he did do was listen to the patient. That is what I learned they will usually tell them what is wrong.
    He was well respected and you could go and actually get answered and treated correctly.

    He could barely walk and every Sunday go and visit patients that had been with him if they were housebound. This is when doc`s stopped doing that.

    He knew the right doc to call if it was beyond him and they worked together. Non of my doc`s ever worked together on all my symptoms. He would not have let this go.

    For the Good ole days sometimes when people actually cared and watched ou for their neighbors. It happens makes tv now.
  14. ReallyTired

    ReallyTired New Member

    Hi, I have a question. I distinctly remember the bull’s eye rash on me (it's been 4 or 5 years now), but yet I continue to receive negative Lyme tests results. I’ve had all three tests (Elisa, PCR, & Western-blot) twice. The PCR, I’ve had 4 or 5 times, all were negative. My gut feeling is that it is Lyme disease that is destroying my life but like most have horrible doctors that don’t know Jack. I am hopefully getting a referral to the Infectious Disease Department at UCSD, which is suppose to be one of the best in my area. I’m also concern whether these tests are being analyzed properly. Maybe I should be sending my blood samples to another lab that specializes in this??? Tests can fail every time if the process isn’t done correctly.

    Anybody's comments, please.
  15. Applyn59

    Applyn59 New Member

    Just wanted to say that when I had a wonderful
    nurse practitioner as my primary care person,
    I felt very much cared about. When I needed
    gallbladder surgery, she asked her peers for
    the best surgeon in the area. When I came home
    after surgery, she called me up and asked how I
    was doing. I loved her to death. She was practicing
    in a health clinic that they shut down due to
    insufficient funds.

    I have a chiropractor that I know cares as well.
    I just don't feel as though my primary dr.
    and my rheumy truly care about me. I could
    be wrong.
  16. Applyn59

    Applyn59 New Member

    I just wanted to say that from all the correspondence
    I have done, I have been told you HAVE to go
    to igenex or bowen or another lyme specialty lab.
    I was told NOT to use Quest. Do you know which
    labs were used?

    ALso, u probably know this, but there is a great
    lyme site called lymenet. I like the discussion
    area listed under Flash discussions.


    LITEFLAMES New Member

    I know what you mean , A friend of mine {One of Many w/ fibro} Was told to get tested for Lyme,,,Becouse of wear she lives ,,,,,Well did have lyme"s , Treated it , But also has Fibro,,,I'll Tell ya ,I,v said this before , And so have others { what do dr's think anyway?} I had never herd of fibro before a friend said it sounded like i had rumo& or fibro!!!!!
    well Dianosed 4 times (spelling) Hello, But I had my owm symtoms, AND it So turn's Out People All over the World
    ,,,Just happen to have the same problims plus we all have a few diffent ones
    GIVE ME A BREAK!!!!!!
    Take care .
    Cindy G.
  18. Applyn59

    Applyn59 New Member

    Hi Cindy,

    Did your friend have distinctive lyme symptoms or just
    did it for the heck of it due to her location??

    Thanks for the info.
  19. Applyn59

    Applyn59 New Member


    As I said in another thread, I am considering going to
    a top guy in Lyme in my state. I am wondering if I
    should call my rheumy and find out if I was initially
    tested for lyme in 94. I really don't think I was.
    Even if I were, it would be smart to test again,
    wouldn't it. I wasn't nearly as sick in 94 as I am
    now. I am not sure I want to call my rheumy's
    office. What if they try to rope me into getting
    tested there. No one ever thinks that they are not

  20. kerrymygirl

    kerrymygirl New Member

    My rheume I saw when he was speaking at a seminar, acted like he knew about lyme and was interested.

    Since I have been to him not only is he terribly smug, but I can tell knows very little about lyme or even fm after speaking with him.

    I only go because worked and friends with his N.P. I hate when I have to go. He says some really off color remarks about fmers. Plus has totally ignored my lyme. Plus I told him about surg. I had and the doc not liking the tissue he saw,stating poss. sclera. He totally ignored what I told him.

    So I go for my injections and get out.

    I would research on your own for good lyme doc.

    Recently scleraderma foudation head called me said she gets the same complaints from people with sclera, finding a good doc that cares and alot of misdiagnosed people before they find out it is sclera. Guess we are not alone.