Please share symptoms

Discussion in 'Lyme Disease Archives' started by heidihorog, Sep 8, 2009.

  1. heidihorog

    heidihorog New Member

    I have yet to receive a positive result for lyme or co-infections, but I KNOW that I have it. My symptoms include:

    Ove the years - itching in my shoulders- nothing would relief
    night sweats
    tingling in lips and tongue
    fatigue
    joint pain
    and recently - the joint pain so bad that I could not walk, raise my arms, open a tylenol bottle, just completely debilitating.
    insomnia
    anxiety
    irregular periods
    mood swings

    Anyone else had these symptoms? They are driving me crazy - and I had all the mild ones for years - about 5. The inability to walk came on in one day - crazy - really scary. And no positive test yet. Have seen a LLMD - but have to wait two more weeks before I test again because I did two weeks of doxy. On the doxy I felt almost normal for the first time in years. In three days after getting off it, the symptoms have returned - not as severe yet.

    Any info would be appreciated - I believe that this is chronic lyme, and have tested negative for all the other diseases - my doctor doesn't seem very concerned at this point......
  2. Nanie46

    Nanie46 Moderator

    Hi!

    It is very common for lyme patients to never have a positive lyme test....the tests just aren't that good.

    My most prominent symptoms in the last 22 years when I had just a FMS diagnosis (been treating for lyme and coinfections since Feb 09) have been:

    muscle and soft tissue pain all over my body and all the FM tenderpoints

    sleep difficulty....for years I could fall asleep but woke up often....then in recent years I could not fall asleep or stay asleep.

    fatigue, especially in the morning

    19 months ago I developed horrible neck pain and stiffness and a constant base of the skull headache

    joint stiffness

    joint soreness

    minor muscle twitching

    mild sound and light sensitivity

    floaters

    mildly sore soles

    cognitive problems....forgetfulness, word finding problems, etc

    tinnitus

    tingling/pins and needles/stabbing pains

    hot flashes

    mild IBS/food sensitivities

    cold intolerance

    itchy skin


    Have you read Dr Burrascano's guidelines?....here they are in case you have not seen them....


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


    Lots of good info at lymenet.org.....click on flash discussion....sign up for free....click on Medical Questions board....post a question and read other's posts....lots of good people there.

    Good luck!
  3. herbqueen

    herbqueen New Member

    10+ years ago

    Began with severe headaches up back of neck and stiff neck
    TMJ
    Spasm in neck muscle
    Then insomnia/pain spread through outbody/stopped sleeping
    Continued headachs/eye pressure
    Stiff neck off and on
    Light and noise sensitivity
    Stiff muscles/pain all over
    sore knee joint
    Insomnia, insomnia , insomnia
    Recovered somewhat on low carb/no wheat/whole foods diet and moducare sterinol
    Heart palpitations and lower tolerance for stress/anxiety
    3 years ago-optic neuritis with nerve atrophy and increasing neuro symptoms (below)/less muscle pain stiffness/but more neuro
    Eye pain in both eyes/eye pressure-worse at menstrual cycles
    Thumbs twitch-twitching in muscles all over
    loss of coordination-missing objects when reaching for them
    jumpy
    muscle twitching all over especially in legs , after exercise worse
    extreme brain fog
    foot drag- loss of depth perception when walking on uneven terrain
    memory/cognitive issues