I am worried I may have Lyme disease but the doctors and the tests aren't showing anything. Here is the background.
- About 15 months ago, I went to a doctor with severe joint pain on various joints - the left shoulder being the worst. The doctor asked me a bunch of questions and thought it might be Lyme disease and took a blood sample for testing. Meanwhile, I was in a lot of pain and she gave me 10 days of Augmentin 875 mg which got rid of the symptoms for about a year. But the blood test came back negative. - After a year, I changed insurance and went to see another doc with the same symptoms (joint pain). She also did a test for BORRELIA BURGDORFERI ANTIBODY WITH REFLEX TO WESTERN BLOT and that came back negative, but the test for Rhumatiod Factor came back positive. So she decided to send me to Rhumatologist who said I have palandromic Rhumatiod and give me some Sulfa based anti-biotic. That seems to have worked and I don't have pain in my joints for the past week or so.
- But these past couple of days, I have some shortness of breath and a little pressure on my chest - especially if I exercise or even run up the stairs. I am 43 and generally in good health until this showed up.
What is the best way to test if I have Lyme disease or should I just trust the two tests that have been done? I read a lot about the tests coming back with false negative a lot. I live in Maryland and work in Washington DC. Are there any Kaiser doctors that are more aware of Lyme disease?
Thanks and sorry for the long post.
G
Posts: 2 | From Maryland | Registered: May 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Kaiser is ANTI-lyme...Don't bother w/their docs.
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
What lab did you get tested at? Most of us here use Igenex lab because they specialize in tick borne disease testing.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Do western blot ASAP with Igenex is 98%acurate (sensitive) for lyme and is ithink around 300$. If you have lyme it will show up.
Posts: 482 | From Nebraska | Registered: Feb 2010
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I took bactrim ds along with some of my other meds when treating babesia.
Tightness in chest, air hunger are symptoms of babesia.
Babesia is a co-infection often present along with Lyme.
It is also possible to have a positive RA with Lyme.
I suggest you post in Seeking a Doctor section and find a LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Sounds like a herxeimer reaction from the sulfa antibiotic. You probably have Babesia.
Posts: 770 | From USA | Registered: Jul 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Always get copies of your test results.
Many find they have specific bands that were dismissed because the CDC and IDSA say you have to
have so many bands to be pos.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Your symptoms could be caused by lyme and or other tick borne infections. I'm not sure if you know this or not but there are battles going on regarding the diagnosis and treatment of lyme disease.
Many who end up at lymenet with chronic lyme disease are the result of ignorant doctors who follow the IDSA (Infectious Disease Society of America) guidelines for diagnosing and treating lyme disease. Kaiser mandates that their doctors follow IDSA guidelines. You will not get approprate treatment with a Kaiser doctor. Kaiser made sure that no doctors in my State will treat chronic lyme disease.
Mardonna wrote: If you have lyme it will show up.
Current tests are often inaccurate. Many people who have lyme are sero-negative - meaning negative blood tests.
Certain bands on the Western Blot can indicate exposure but if you really want to know if you have it or any of the other Tick Borne Infections, you will need to see a Lyme Litterate doctor for evaluation.
ILADS is a group of physicians who specialize in treating lyme disease. They have a much better understanding of lyme disease and know how to appropriately diagnose and treat. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors who are closest to you. http://tinyurl.com/6na364
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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onbam
Unregistered
posted
The IgX Western blot is 98% specific but only about 45% sensitive (still way better than standard labs, which miss about 95% of cases.)
With any chronic illness, treatment for LYme should be the first thing to come. And an HMO doc won't help you; there is a coverup being driven by the insurance and biowarfare establishments.
check out lymecryme.com and undertheeightball.com
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