posted
Hi, new to this Looking for some advice, have many of the symptoms of lyme - Very tiered all the time, I'm a carpenter and am having trouble making it though a day at work Stiff neck and some swelling in the limfnods Mild headacks Memory loses??? Upper chest pains, like cramping Restless leg syndrome (don't know if that's a symptom) Mood swings, irritability Too much sleep or insomnia Difficulty falling or staying asleep Panic attacks, anxiety, I have had this for years and an on 10mg. paxel a day Extreme fatigue Much back pain Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Most of these symptoms I've had for months, but for the last few weeks the fatigue and joint pain are getting very bad My left shoulder has a constant ach and at times goes down my arm, and have aching and clicking in my knees and ankles. Have had blood tests for romatod arthritis, this was clean. And the test for lyme came back negative, but still not convinced, I live in western ma. And know many people with lyme, and who I've talked to thinks it sounds like I have the disease. I am looking for the best way to rule lyme in or out from here? Any help would be appreciated.
Posts: 5 | From ma | Registered: Aug 2006
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Carol B
Unregistered
posted
How are the many people you know with Lyme being treated ? do you have an LLMD in the area? Suggest finding an LLMD.
Negative bloodwork means diddlysquat (sp) when testing for Lyme.But Igenex lab in California is more reliable than local labs- at least in my experience.
Good Luck-and I mean that literally-cause it seems to take good luck to find a good doc. Carol
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posted
Sounds like lyme and bartonella. And maybe babesia as well.
Get to a llmd asap.
Best wishes, lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
The tests for Lyme disease are problematic. Only 2 labs test are well respected (by the LLMDs and the members of this board). Most LLMDs use Igenex or MDL; some people like Bowen labs.
The interpretation of the tests is also an issue -- if your non-lyme literate doctor used the ultra-conservative CDC standards of positive tests, which he/she should not (these standards are for surveillance only) then it is quite unlikely that you would get a positive test. Even the best labs say they get 10-20% false negatives, for various reasons.
Coinfections are a serious issue, and you want to be assessed and treated for them -- bartonella, babesia, erlichia.
It's important for you to go to a Lyme literate (LL) MD and be thoroughly assessed. The LLMD will take into account your symptoms and history as well as your bloodwork and make a clinical diagnosis. It's true that "not everything is Lyme" -- but you need to have LD ruled out by an expert.
Be sure you find someone who is recommended by several people who have been treated by that doctor. (I see that you've posted in Seeking a Doctor. You can also talk to some of the support group people in your area -- see http://www.lymenet.org/SupportGroups/UnitedStates/ )
You're likely to be in for a long, hard slog. when you're getting as sick as you are, it's really hard to keep insisting on getting treatment in the face of constant refusal. Hang in there and don't give up until you find an answer that satisfies you.
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