Kerrymygirl ~ are you around?

Discussion in 'Fibromyalgia Main Forum' started by IngaDinga, Mar 11, 2003.

  1. IngaDinga

    IngaDinga New Member

    You posted on my other thread regarding difficulty swallowing. I have never tested positive for Lyme by blood or urine. But I had a bone marrow biopsy that showed Lyme DNA. So, perhaps that is a big part of my problem? I am also positive for Myco Fermentans, HHV6, CMV, Babesiosis and EBV. I see my Lyme doctor tomorrow.

    Could you tell me a bit about your dysautonomia problems? How do they manifest? Thank you!


    [This Message was Edited on 03/11/2003]
  2. kerrymygirl

    kerrymygirl New Member

    Just posted a whole message to you and lost it. It is after 2 and had a long day, went to N.P. at rheume today and had alot of injections so I am hurting. Anyway I will try again but will get back tomorrow. There are only a few labs around to do real tests and normally you have to pay for it. I am glad you are seeing a lyme specialist. This tick is no bigger than the size of a top of a pin. It has been known to break down the immune system making f.m. secondary to lyme. Symptoms cross over so only truly conscientious doc will follow up. This has been a growing epidemic and many who think they have f.m. very well could have started with lyme. It hides the bacterium very deep in tissue that is why it is so hard to find if labs do not know the proper procedures. I feel in my gut since yrs. ago coming home with numerous bites and in contact with deer camping,then 10 day stay in hosp. with meningitis, and docs not knowing what to think that was my prob. lyme. I told her today I feel like I am living with meningitis almost every day. Possitive ebv.,often is linked I also have poss. ebv. I have had 3 poss. lyme and some negative also some poss. ana`s. I do hope the dr. will try to help you. There are some serious decision to make,if you have had it a long time success rate of cure is very controversial,it means alot of expense if you are started on I.V`s, then to oral which can last yrs. It is worth it if one gets well. Otherwise it is a great physical and emotional toll,especially if you have any type of severe f.m., and some people go back to square one. Like f.m. still in trial and error phase. Politics are hindering getting this problem under control. May the terrorists brought it over where are you Binladin???? I will be thinking about you tomorrow please let me know. Good Luck and hugsss. Tell me when all this started with you???
  3. kerrymygirl

    kerrymygirl New Member

    Just wondered how the doc was and if he was helpful. Also hhv6,which is another herpes type virus comes out positive usually unless there is further testing. Maybe you did get that and I hear when we have these dysautonomia problems which most f.m. people qualify that it is common to have positive hhv6. There are certain treatments they do but I did not hear about alot of success. I guess that is why alot of docs do not test for it. I do have pages of info from a specialist on hhv6. I need to reread since my brain does not retain too long that type info anymore. Oh well, what else is new? Hope your o.k. or hope you do not have lyme it is a bummer along with everything else....Hugssss
  4. IngaDinga

    IngaDinga New Member

    I have been having a rough time lately. I am finding it hard to go on these days. My Lyme doc is starting me on IV antibiotics again tomorrow. My autonomic problems are acting up and I feel overwhelmed. I am basically homebound and being alone and the sole provider for my little family......... wow... I am just on the verge of tears all the time.

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