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Could it be Lyme?
Over the years I have had positive Lyme screen tests (B. burgdorferi Ab, IgG, IgM) but then the ensuing Western Blot tests to back it up were both negative. The lab indicated that this could mean I have autoimmune disease causing a false-positive Lyme, but my CRP and sed rates are always normal so I was told I could not have autoimmune disease. After quite a while I was referred to an "infectious disease specialist" and that @$#% just sat on his keister and told me (without examining me or doing any tests) that I could not have Lyme disease because it is "not a chronic disease." Meanwhile, I am deteriorating with neurologic symptoms that are like a textbook case of ALS - but the doctors just blow me off. I have muscle wasting, but no joint paint. No pain at all except when my neck muscles get so tired of holding my head up. When I use a neck brace, the pain goes away. I have extreme weakness, fatigue, muscle cramping, weakness in cheeks, mouth, arms, legs, neck. Walk with cane. Falling. Nighttime breathing issues. Choking on saliva sometimes. Etc.
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Best Answer
Thank you so much for you insightful and highly informative response!! I plan to use all the information you so kindly posted!!
I agree with you that modern medicine has it backward! I think we could do without our modern med schools which seem to dumb down all who enter. Med students would do well to get out of their ivory tower classrooms and apprentice with really good established MDs, spending lots of time with patients so they can readily relate symptoms with diseases rather than rely on memorized one-size-fits-all lists of disease symptomatology requirements out of their med school textbooks (which are often wrong).
You said that you were blown off too: How long did it take you to get your answer? I'm going on 6 years of looking and bouncing from doctor to doctor. I'm tired.
Thanks for your terrific post!!
WAF
I agree with you that modern medicine has it backward! I think we could do without our modern med schools which seem to dumb down all who enter. Med students would do well to get out of their ivory tower classrooms and apprentice with really good established MDs, spending lots of time with patients so they can readily relate symptoms with diseases rather than rely on memorized one-size-fits-all lists of disease symptomatology requirements out of their med school textbooks (which are often wrong).
You said that you were blown off too: How long did it take you to get your answer? I'm going on 6 years of looking and bouncing from doctor to doctor. I'm tired.
Thanks for your terrific post!!
WAF
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I'm so sorry your docs are doing what too many of mine did too: just blow it all off. What's good is: you aren't giving up finding out what's going on. I admire that spirit.
Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers. Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.
There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening. It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme. There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme. He recovered. If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.
About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services. Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you. Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities. Also, if you get an LLMD that just doesn't seem right somehow, then switch. Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
The first one, ILADS, is the main organization for LLMDs. Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.' Well worth reading if you're up to it.
The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)
Best wishes to you -- stay strong, and come back and visit with us, okay?
and PS about your tests being negative: the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves. Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme. Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system. Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine: history and exam, then tests, to come to a diagnosis. Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.