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
    joint pain
    and recently - the joint pain so bad that I could not walk, raise my arms, open a tylenol bottle, just completely debilitating.
    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


    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


    mildly sore soles

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


    tingling/pins and needles/stabbing pains

    hot flashes

    mild IBS/food sensitivities

    cold intolerance

    itchy skin

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

    Lots of good info at on flash discussion....sign up for on Medical Questions 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
    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
    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

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