So Hard To Describe How I Feel.

Discussion in 'Lyme Disease Archives' started by greatgran, Nov 3, 2010.

  1. greatgran

    greatgran Member

    I am not sure if I have lyme , cfs some type of an infection or what. I am trying so hard to get some answers but I feel I am losing the battle.

    I can't seem to describe my symptoms to a doctor to where he gets it. There are days I feel so bad not so much pain but body aches, feel like I might have a sinus infection but no symptoms the doctor can see. Sinus x-rays are clear, no fever in fact body temp is low around 96-97. I am so sick I couldn't get to a doctor. Then comes the crying and depression.. I just don't know where to turn. I feel I have an infection but no fever, all test are normal and then there are days it as if I had been poisoned .. My balance is off, vision problems and all this varies from day to day .. I use to be able to get out and do so much more, now I am mainly housebound and can't describe my feelings.

    No one gets it as I can't seem to get my point across. There are times I think I have lyme symptoms then I don't seem to fit. All my test have been negative .

    I have some Clindamycin I am thinking of taking to see how much if any an antibiotic can help, but so scared of C-diff.. Yep , I am a basket case.

    I just don't know where to turn.. thanks needed to vent as the depression is getting so bad..

    gg
  2. victoria

    victoria New Member

    It's so hard to know what the best course is, much less what one might have (you could have one or more of the other infections without Lyme; plus opportunistic virus etc). Thus the "laundry list" of symptoms, which is quite long just for Lyme itself as you likely know.

    I know money is limited for most of us, which makes it harder to try different doctors. But maybe a change in doctors is what is needed. Sometimes a different one can "see" things in a different light. A good place to get referrals is at lymenet.org as there's a special section where people can privately let you know what doctors are good (or bad) nearest to you.

    Has your doctor tried you on abx for Lyme in a large enough dose as recommended by ILADS... and have you ever experienced a herx if you have taken them for a while? The sad thing is the amount "normally" recommended by the IDSA isn't usually enough to produce a herx, tho it can often make people feel better for a bit (tho it may not even do that). If you have taken abx and felt better even for a little bit, it's a good indication in itself tho.

    Maybe look at others' stories online and piece it together at least for your regular doctor as to the variety of experiences. It's worth a try at least.

    I wish I could be of more help, I can well imagine the feelings of helplessness. Most have experienced this even when getting effective treatments for "whatever" they might have. Please take care... and don't give up.

    ((hugs))
    Victoria
  3. Nanie46

    Nanie46 Moderator

    Hi,

    It can be confusing because symptoms can change from minute to minute and day to day.

    It may be helpful to you and also to your Dr if you print out the symptom checklist from either Dr B's paper, p 9-11...

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    or from this booklet....

    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    After you print it out....fill it out. You will be able to see more concretely all of the symptoms you experience, even if you don't have every symptom every minute of every day.

    Did you contact any Dr's on the LLMD list that you have?

    I think your best bet of finding answers and help is to "just do it"....get an appt with a LLMD and gather your past records and write your health history and go.

    There was one in a town in your state where you said you had a family member, I believe.

    A small amount of antibiotic may not tell you too much. It could, as Victoria also said...

    1. make you herx....a sign of bacterial die-off

    2. make you feel better....a sign of a bacterial infection responding to the abx

    3. do nothing.....could mean that the dose and length of treatment is not high and long enough when the infection is chronic and widespread.
  4. victoria

    victoria New Member

    how are you doing???

  5. lil_spitfire

    lil_spitfire New Member

    I'm so sorry you feel so crummy. I can certainly relate to having great difficulty describing my symptoms and getting someone to 'get it'. I was fortunate to find a lyme literate doctor in my town who I began seeing about 3.5 years into my ordeal. I would suggest you do the same, as many of your symptoms match mine when I was first ill. There may even be a lyme disease association in your state. If you like, you can message me back with your city and state name and I'll do my best to find some lyme literate doctors in your area. Bless you!

    lil_spitfire