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    Old 03-16-2006, 12:32 PM   #1
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    Lyme disease or not??

    Hi All!

    This is the first post i've done on lyme disease. I've been posting on ms...but i'm not sure what's goin on with me. Here's the thing. I have symptoms that seem to be either lyme or ms...and i understand they crossover a lot! I've had things like probs with one eye being blurry or hurting BAD...probs with legs hurting bad...both, but mostly my left leg. Times of numbness in my hands...mostly in my fingers...and in my feet...mostly in my toes. Over the years..about 5-7..i've had probs with memory getting really bad. This last month has been BAD. I started to notice numbness in my whole foot and up my legs, in my arms and hands, all over me basically. I began getting the room was spinning around me. I was REALLY off balance and kept having to "catch" myself when standing completely still. My legs began to jerk as well as my arms and hands. I can't "be still". It wakes me up at night, tho not often. Heat makes it worse...not just outside heat..or getting worked up...but heat from food, drink etc. I've seen a neuro and he did blood work for lyme disease. I live in an area affected by hurricane katrina...southern mississippi..and of course during that time we were out of water, power...EVERYTHING..for three weeks. I got bit by a tick during that time..but we were aware of things like that to watch for. We'd take cold baths at hot water!...and they were by candle when i found it i felt sure it was from that day and hadn't been there too long..i got it off and felt sure i'd gotten it all. I didn't develop a rash or any other signs of any probs with that tick. I felt fine. O yeah...the heat sensitivity didn't come til this last i was ok during the power outage! Anywy, the blood work came back and the nurse tried to explain it...she said one test was for muscle inflamation and it was normal and the other was for inflammatory types of arthritis...and it was normal. Can that mean i dont' likely have lyme disease??? I've also had an mri and gotten a copy of the report which said nothing of leisions...but i still have to see my neuro for the interpretation of all this. Can anyone shed any light on my situation?? I will be seeing the doc again about all this...but not til Apr 14th, so i'm anxious and worried.

    Thanks for all u'r help!


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    Old 03-16-2006, 02:14 PM   #2
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    Re: Lyme disease or not??

    Hi Rhondabuzz,

    Welcome! First of all, I am so sorry that you had to go through Hurricane Katrina, I have a couple of friends who lost their homes from that hurricane. It's all so sad.

    As far as Lyme, your symptoms could be lyme related and not be MS at all as many members here were first diagnosed with MS to find out later on they really had Lyme Disease.

    I suggest that you get your blood sent to IgeneX Labs located in Palo Alto, CA.

    You can order the test kit yourself but you will need a doctor's signature for the tests. There are the initial tests just for lyme itself, then there are more tests for co-infections such as Babesiosis, Ehrlichiosis, Bartonella, Mycoplasma. I believe each the co-infection tests cost about $175.00 each.

    It will be the best money you ever spent.

    If you read the "sticky" thread at the top of this board called "Lyme Disease Information" it gives you all the symptoms of Lyme and each of the coinfections.

    What I find interesting about your post is your sentence about heat. Lyme spirochetes (bacteria) do not like heat and the lyme spirochetes go chasing off to another part of the body to try to escape the heat. They also like living behind the eyeballs because it's a great place for them to hide, causing blurry vision and eye problems.

    Do you know where your blood was tested? Did you have the Western Blot done? If you blood was sent to Quest or Labcorp, I wouldn't trust the results because those labs are the worse and not accurate at all.

    I look forward to hearing from you,

    Last edited by moderator2; 03-18-2006 at 07:23 AM.

    Old 03-16-2006, 02:32 PM   #3
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    Re: Lyme disease or not??

    Hi Denise

    Thanks for u'r input! I did have my tests done at Labcorp..and i'm hearing that same thing about the lab out in CA as well. I will be callin my doc in the morn to request a re-test sent to them. Thanks! I had no idea the heat could affect anything except's good info to have! I've been so worried about all this and not being a member of the medical community makes it all the harder to communicate and understand. I'll be seeing my doc in april...not soon enuf...but as soon as i know any results i'll update. I have another question if u or anyone can help. What is CPK and how does it relate to lyme testing?? I THOUGHT it was one of the inflammatory tests..but i'm not sure.

    Thanks so much for u'r help! It's all so appreciated!

    Old 03-16-2006, 03:06 PM   #4
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    Re: Lyme disease or not??

    When my symptoms started, It took 2 1/2 months before positive bloodwork came back. 3-4 weeks after a hike my Joints hurt, then aching arms and numbing frozen pain in foot. Lyme was negative from my general Doc and so was any inflammatory markers. The pain traveled to legs etc. Finally bloodwork came back saying i had Myositis. Elevated CPK, Aldolase,
    C reactive protien and a Positive ANA pointing to polymyositis or lupus. 1 month of prednisone and more tests proved it wasnt auto immune completely. Bloodwork was normal again for a while. Finally I was diagnosed with Lyme and an auto immune response to lyme. (11 months later, 19 doctors) When I was put on antibiotics my CPK went up to 2700, which is very high and shows serious muscle inflammation. Its wierd At times the pain has been the worst, the cpk is normal. Its when weakness comes thats when my CPK has gone up. They call it Lyme Myositis which can happen. Its frustrating when everything comes back normal.
    Definately get your bloodwork sent to that lab IGENEX. Thats were my lyme came back positive. Some docs will put you on Antibiotics if they suspect lyme, find one of those docs. Sooner the better
    Good Luck

    Old 03-16-2006, 03:18 PM   #5
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    Re: Lyme disease or not??

    hi jen, what is ckp?than you

    Old 05-06-2007, 12:55 PM   #6
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    Re: Lyme disease or not??

    Originally Posted by brid View Post
    hi jen, what is ckp?than you
    A CPK is a blood test that measures creatine phosphokinase (CPK), an enzyme found mainly in the heart, brain, and skeletal muscle.
    When the total CPK level is very high, it usually means there has been injury or stress to the heart, the brain, or muscle tissue. For example, when a muscle is damaged, CPK leaks into the bloodstream. Determining which specific form of CPK is high helps doctor's determine which exact tissue has been damaged.

    This test may be used to:

    * Diagnose heart attack
    * Evaluate cause of chest pain
    * Determine how badly a muscle is damaged
    * Detect early dermatomyositis and polymyositis
    * Tell the difference between malignant hyperthermia and postoperative infection
    * Reveal who carries muscular dystrophy (Duchenne)

    The pattern and timing of a rise or fall in CPK levels can be diagnostically significant, particularly if a heart attack is suspected.

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