To "aaronkatie" Re: Lymes Disease

Discussion in 'Fibromyalgia Main Forum' started by wildcatinky, May 26, 2003.

  1. wildcatinky

    wildcatinky New Member

    Aaronkatie, I noticed on your last post you mentioned your Lymes doctor. I too had Lymes Disease about 10 yrs ago, and eventially developed FMS. Did your FMS developed as a result from having Lymes? The Lymes almost killed me, it went so long that my liver abcessed, and my gall bladder diseased and had to be removed when they went in to remove the abcess from my liver. My joints and muscles have never really stopped hurting completly. When I contracted Lymes it was new in this area in 1993 (Western Kentucky), and this is why it went so long untreated.
    Anyway I was just curious. Thanks!

  2. kerrymygirl

    kerrymygirl New Member

    Hi, I was misdiagnosed for over 10 yrs. Was on vacation in fl.,no less. We were camping and deer came up, petted it. Came home within 1 wk. was hospitalized with meningitis. I had many bites. I swell alot just from mosquito bite, so it went unnoticed. There were 5 doc`s all scratching their heads do to my age and viral mening. I was in hosp 10 days but never well again. My fm/ebv/cfids came after my immune system was so compromised. I know Betsy has a Lyme doc. I have none on my insurance so no 1 is addressing issue and I am getting sicker. Everytime they open me up they find something wrong. I am so sorry to hear of all the prob. you have had. I have been wondering about constant pain around my gallbladder region,& back. I was told and read alot about the damage this sphirocete can do. How tricky it is going to brain, hiding, then organs. I am trying to get my doc to listen about the seriousness. He will not speak about the fm or lyme. There is no other doc on my program to help me. The 1 good lyme doc here you have to have cash right up front, no insurance accepted.

    How are you doing Betsy? Tim are you doing better or it sounds like it is still active somewhere? Take Care Please

    R.S. My friend had been bitten by tick. He had Rocky Mountain fever, yrs ago. Now has very severe fm.
    [This Message was Edited on 05/26/2003]
  3. wildcatinky

    wildcatinky New Member

    Thank you both for the replies. Kerrymygirl you really need to see an Infectious Disease Doc. Maybe you can find one that is descent enough not to want all this money up front. I was in and out of the hospital for 6 months straight with the initial Lymes problem. I was on many different IV antibiotics but the one that seemed to finally bring me back was Rocephin (Sorry I don't think the spelling is right,I'll have to dig out my hospital discharge papers)I had a Hickmans Cath for almost a year. I have been through many IV runs since, probably every other year. Luckily I have good health insurance and I was able to do this at home with home health visitations.
    It's very sad Kerrymygirl that your Doc will not take the FMS and Lymes seriuosly. Like Betsy said this can do some major organ and brain damage, also can affect the heart in some people. Year before last my Lyme titers can back high and I went through IV theraby again. My fever was spiking 106 degrees, this is the last time I had this type of reaccurance. I still run a low grade fever most of the time, but I think this is my FMS.
    Thank you both soooooooo much for your replies, hang in there, and please know you both have a friend when you need him.

    Have a Pain Free Week!


  4. kerrymygirl

    kerrymygirl New Member

    I was told by 2 doc`s working on Lyme research. One of the doc`s worked on research project at pain & arthritis clinic I did patient work ups there. I was told they have no doubt I have lyme. My insurance doe`s not cover any of this. I wrote to you about it Betsy. Did you get my e-mail? I was treated for a mo. with doxy at 1 time. I became quite ill also. Doc stopped treatment because I became worse
    . At that time I was just learning about lyme. Found out later that this made things worse because the spirochete goe`s to brain and hides. Then doe`s neurological damage,changes and mutates. The cytokins start giving off toxin`s in body.

    I have tryed to get my doc to take these things more seriously. All he will discuss is my cholesterol and poor dexa. I brought it up again,last visit. He told me not to believe everything I read. Duhhh. I have been seeing him for 2 yrs. and he said oh yes you do have lyme too,hello?

    I have only 5 other primary doc on list, they do not treat either, or even take fm pts. I told them what 2 doc`s here doing research, we even watched under microssope. If I go to the lyme doc here I have to pay up front, then he will charge me for everything he doe`s,test etc. I have been living off of savings for almost 10 yrs. The bank is running dry. I live alone and need to keep a roof over my head, pay my bills etc. So I do not know what to do. My daughter is now showing signs, she has insurance and will not look into it. When the deer came up to us, she ran a high temp for a couple of days, then was fine. No one even thought about lyme then. I have sent her info off of lyme net. She just ignores. So, I am sorry to hear about your kids also, Betsy. Alot of doc`s just don`t get the dangers. I have been to a few & tried. My rheume just ignores me,says it is the fm/or cfids or ebv, which is high. I would need yrs. of treatment since this happened along time ago.

    There is no absolute proof after this long that it will cure it. If I knew I could go back to work and pay it off I would go for it. I just have so many things wrong now.
    Also concerned about herx. I have no 1 here to help if I can`t get out at all.

    My hands closed up when they operated doc said he never saw tissue like mine. Said it was indicative of Scleraderma. So I am in a quandry.

    Hope you will be o.k., Tim
    Betsy I have been worried about you too.

    Sorry about rambling on. I guess I am just so frustrated, have alot of "yucky" stuff going on with myself and family.

    Please take care!!!! Huggsss