All over body (skin) burning. Lyme?

Discussion in 'Lyme Disease Archives' started by bct, Sep 17, 2009.

  1. bct

    bct Active Member

    Hi all. I've had CFS since '94. I was dx'd with peripheral neuropathy about '04. Started with freezing feet and hands. Now is often all over burning skin --- like very bad sunburn -- on most parts of my body, especially when I wake in the morning.

    I've had test (EMG?) by neurologist, also lumbar puncture to exclude MS and metastisizing chronic lymphocytic leukemia, and some other stuff. Was dx'd with small fiber neuropathy by emg testing. Idiopathic.

    My Igenix tests of five yrs. ago showed 3 0r 4 Inds.

    Does anyone here have all-over burning like this?

    I posted here a few yrs. ago if you want to see more of my background.

    Thanks,
    Barry
  2. AllWXRider

    AllWXRider New Member

    My missionary friend got this, in Thailand. A neurologist there labeled as an infection type.

    We found that Mangosteen was a great immune booster AND that it was sold in every market there in Thailand. It worked, it slowly went away.

    I also read that metal can cause this.
  3. Nanie46

    Nanie46 Moderator

    Hi,

    Welcome!

    Some people with lyme do experience alot of burning.

    Could you post your Igenex results here?

    If I were you I would consider finding a good Lyme literate MD for a thorough evaluation.

    You can find a LLMD at lymenet.org.....click on flash discussion....sign up for free....click on Seeking a Doctor board........create a post asking for a LLMD in your state.

    Lyme is a clinical diagnosis....means it is based on history and symptoms. Lyme should never be ruled out by just a negative test....which it sounds like what your Dr must have done.

    Lymenet.org also has a really great Medical Questions board. I urge you to go there and post your questions. There are alot of intelligent and experienced people there who will help you.

    I am Dekrator48 on lymenet.org.

    Please read this paper by a lyme expert.........


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

    Take a good look at the symptom list on p 9-11.

    Your CFS has a cause, even if Dr's tell you that the cause is "unknown".

    Many people with with CFS and FMS later found out the cause of their illness was Lyme and other associated tick borne coinfections like babesia, bartonella and ehrlichia.

    I can provide you with lots of other info if you want.

    Good luck!
  4. AllWXRider

    AllWXRider New Member

    I tried to sign up on Lymenet.org and it told me that my IP address was not allowed. I emailed the webmaster already.

    Lots of good info. It will take days to go over it all.

    Yes, I think every CFS/FM sufferer should go over Dr. Burrascano checklist.

    "Ask, Seek, Knock"
  5. Nanie46

    Nanie46 Moderator

    Hi,

    Hope you get the problem with lymenet solved so you can sign up and get on their boards.

    Hope you find the answers you need to get better.
  6. bct

    bct Active Member

    Too much of a flare today.

    Nanie46 : thanks for the links. Do I need hi-speed inter-net for this site? Don't know what a "flash discussion" is. I live in a very rural area, with very slow dial-up only (19.2kbps !). Will it work?

    Again, many thanks,
    Barry. (I'm getting very discouraged by this whole Lyme-not Lyme controversy with my docs.
  7. Nanie46

    Nanie46 Moderator

    Hi,

    I think you will be ok with dial up. I'm not sure why they call it flash discussion.

    Give it a try. It's a great, helpful site.
  8. mstammyt

    mstammyt New Member

    Hi,
    My husband and I both get this horrible "spells" they are very hard to describe.. It is like having a hot flash or burning skin all over your body and the chills at the same time. It makes us feel very sick and last from a few minutes to a few hours.
    Please let me know if this is simular to what happens to you?
    Thanks,
    Tammy <><
  9. nancycleek

    nancycleek New Member

    I had your symptoms beginning 1999. began with freezing hands, feet, then burning, numbness. By 2002 muscle weakness, diminished use right side of body. the burning sensation was severe. Was misdiagnosed w/ post herpetic-neuralgia, cfs, MS, last but not least, hypochondria. Was diagnosed w/ lyme 2009 and am now able to walk. My 17 yr. old daughter also had cold hands, feet, then burning all over. She was diagnosed w/ lyme Oct. 2009 and is now improving. Thank God she didn,t go through 26 doctors, painful test over 10 years like me. Lyme is a clinical diagnosis as labs are not reliable.(even Igenex) The infection mutates and hides behind cells etc. It is CRUCIAL you see a lyme literate doctor asap. The disease almost destroyed me prior to treatment. Other symptoms include, but not limited to, low T-cell count, low blood preasure, night sweats, muscle twitches, fatigue, insomnia, lowered labido, sexual disfunction, sensitivity to light, sound,heat, frequent urination, tinnitis. Mornings are the worse, probably because of neurotoxins. I wish you well. Please see LLDR!! best wishes from Nancy
  10. InvisiGyrl

    InvisiGyrl New Member

    My Igenex was the CDC positive type - without the Ellisa, I don't have it handy, but I tested pos after about 50 years of infection.

    For me, the burning all over was remedied by getting rid of Mercury - a Heavy Metal. Was Hell getting it out but rarely, if ever do I experience that anymore.

    But now, I am sweating profusely and unable to sleep. My brain and spinal cord goes on fire. I think this is fungal tho, because it started after I had cysts removed from my ankles and was on an antibiotic drip.
  11. Nanie46

    Nanie46 Moderator

    Hi,

    Have you been evaluated/treated for the coinfection Babesia?

    Babesia is associated with profuse sweating, especially at night.

    See pages 22, 23, 24, 26, 27 of Dr B's paper...



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
  12. Misfit101

    Misfit101 New Member

    I havent had the all over feeling of being burned. It picks its spots. I 1st noticed it on my decolletage area at nite. Now its mainly my hands. And they literally feel like someone has set fire to them. It woke me at 4:30 this morning. Got up and put an ice bag on the hand. The bonus was that it helped with the pain enough that along with 500mgs of ibuprofen and a percocet i was able to go back to sleep. Its the dog-gonedest thing. 3 wks ago the agony was in the lower half of my body and now its in the upper half. Shoulders wrists and hands. I hate that i cant drive right now.