posted
I have been sick for 20 years. My big symptoms came on somewhat suddenly (over a few months) and have been here with me through the years. Of course I have added many to them as time has progressed.
I have been to over 30 Drs. Had many CT scans, MRI's, blood tests, ... I feel like I have been tested for just about everything. I've given up on on Drs and hate going over my symptoms anymore because no one really seems interested in helping me solve this.
Recently, I was diagnosed with Lyme. It does fit very well. The doctor is very confident and started me on antibiotic therapy. I seem to have had some herxing - I think. I stopped having night sweats for about a week, but had it again last night.
BUT, my tests came back negative. I know that many people with chronic Lyme test negative. That does comfort me some. I just can't help but DOUBT. Is this really it? Or is there some illusive illness that I just haven't discovered yet?
The treatment seems to have helped the night sweats. Could antibiotics help night sweats from some other chronic illness?
What did you rule out before landing on Lyme? What else should I consider?
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I know how you feel.
I hven't been sick nearly as long, but I went through a year of testing this and that before finding an LLMD who started treating me for Lyme.
Of course, now we fianlly got the IgeneX tests back, and everything seems to be negative--a couple positive or indeterminate bands on each test, but overall negative.
And the test for babesia, which he was sure I had, also came back negative.
The abx are helping a bit, so he still thinks it could be Lyme, but it sounded like he wasn't 100% positive.
They've ruled out so many things it makes my head spin--MS, ALS, Rheumatoid Arthritis, lupus, CFS, mono, heart disease, aneurysms, strokes, etc.
I'm sure I'm missing something.
Some days I feel better, but other days I feel worse again and I'm sure I have some undiscovered deadly disease.
It's such an uncertain bunch of diseases that unless you test positive, it's hard to be sure of anything.
Hang in there.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I totally feel the same way. I have only been ill for 3 years and in treatment for 1. My test is also negative.
Lyme makes sense so far; but like you I wonder sometimes if we all have some mystery illness not yet discovered.
It seems that most everything else has been ruled out for me too.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Try testing through Igenex. The western blot #188 and #189 are useful for narrowing things down a little bit.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I have been sick for almost 3 years. I always seemed to have a very weak immune system most of my life though.
I grew up on the east coast and had numerous tick bites as a kid.
I have been tested for and ruled out RA (2 times), Lupus (3 times), Mono, CFS, Behcet's Disease, etc.
I tested POSITIVE for Lyme 2 1/2 years ago and the ID Dr. told me he didn't believe it was Lyme and diagnosed me with Rheumatic Fever. This is not the same as Rheumatoid Arthritis.
I have been treated for RF 5 times in 2 1/2 years. I was not getting better so I sought another opinion recently.
This Dr. tested me for Lupus, Lyme (WB), Ehrlichiosis and Rocky Mountain Spotted Fever.
I tested negative this time for Lyme but still had two reactive bands. I tested negative for Lupus and Ehrlichiosis but tested POSITIVE for Rocky Mountain Spotted Fever.
I will be asking for an Igenex test for Lyme after my initial 2 weeks of doxy treatment. I am convinced I have LD along with RMSF. Especially since I had 4 reactive bands and a positive IGM previously.
I have also doubted this but the more people I talk to and the more I read and learn the more convinced I am. My symptoms fit LD to a T.
I completely understand how much you want a definitive answer but sometimes the only proof we have is seeing the improvement during treatment.
Have you been tested for other tick born diseases?
Hang in there. You are in the right place for support and to learn.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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