posted
I have no doubt you have Lyme and most likely one or more of these other coinfections. Have you found an Lyme Literate Medical Doctor? Post your city and state in the 'seeking a doctor' section.
The blood tests for these bugs are NOT accurate. I was tested NUMEROUS times over the years - always negative until last fall. I also believe I got some of this from mosquitos and fleas, not ticks.
Also, I just tested 'equivocal' for malaria, and I live in PA. I have to be retested, because they aren't sure if I have malaria, but it would be worth looking into if you test negative and still aren't improving on antibiotics.
I think different infections flare at different times, so it's hard to tell which one is causing which symptom, but hang in there. It will get better.
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quote:Originally posted by merrygirl: 23 is specific for Lyme disease
But It said I need to be positive on 5
Posts: 5 | From Ohio | Registered: Jul 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am relatively new to Lyme so keep that in mind. Someone with more experience will chime in.
Basically the CDC says you have to be positive for 2 or 5 depending on wether it is the IgG or IgM tests.
The only bacteria that can cause 23 to be positive is LYME.
41 is usually the first to be positive, but is not specific to Lyme that is why you are not CDC positive.
In my opinion you need treatment and post in the seeking a doctor area for a doctor that only deals with Lyme. Do that now so you can get this show on the road.
If my child had those results I would demand treatment. Regular docs and ID docs dont get it so dont waste your breath explaining it.
I am not a doctor but you will see when the veteran members chime in.
Good Luck Melissa
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
This is from Treepatrol
WESTERN BLOT IN LYME * Reflects antibody response to specific Bb antigens- they are reported as numbers called ``bands'' * Some bands are seen in many different bacteria- ``nonspecific bands'' * Some bands are specific to spirochetes * Some bands are specific to Bb
WESTERN BLOT IN LYME * Positive blot contains bands specific for Lyme * Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93 * Spirochetes in general: 41 * Nonspecific: All others! * The more specific bands that are present, the more sure the diagnosis
PITFALLS OF THE WESTERN BLOT * Very difficult to produce and interpret a western blot * Bands do not easily line up * Appearance affected by subtle changes in temperature and chemistry of the test system * The specific strain of Bb used to produce the antigens may not match the strain the patient has!
HOW DO YOU MAKE THE DIAGNOSIS? * Lyme is a clinical diagnosis * Even the best Lyme tests are only an adjunct * Use the ILADS point system
POINT SYSTEM * Tick exposure in an endemic region 1 * History consistent with Lyme 2 * Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded): * Single system, e.g., monoarthritis 1 * Two or more systems 2 * Erythema migrans, physician confirmed 7 * ACA, biopsy confirmed 7 * Seropositivity 3 * Seroconversion on paired sera 4 * Tissue microscopy, silver stain 3 * Tissue microscopy, monoclonal IFA 4 * Culture positivity 4 * B. burgdorferi antigen recovery 4 * B. burgdorferi DNA/RNA recovery 4
POINT SYSTEM DIAGNOSIS * Lyme Borreliosis Highly Likely - 7 or above * Lyme Borreliosis Possible - 5-6 * Lyme Borreliosis Unlikely - 4 or below
posted
In 2002 I could not walk nor feed myself. Every test I had came back negative. Between 2002-2003 I had at least 3 local Lyme tests. Then I found a Lyme Literate Doctor and my blood was sent to Igenex where I was positive with 8 out of 10 (whatever they are called) on a Western Blott. Since 2003 I have had another 7 local tests - all negative. I live in PA. Please find a Lyme Literate doctor. After 2.5 years of antibotics, including 7 months of IV rocephin, I am working full time. I still have some symptoms, but I am walking without a cane, feeding myself, I can add 3 numbers again, and not get lost driving. I am now off antibiotics. I am now seeing a naturalist doctor and doing bioresonance treatments. Seems to be helping! I've had more energy after I Herkz.
Posts: 111 | From York, PA | Registered: Jul 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A negative Lyme test cannot rule out Lyme disease. The tests are just not good enough.
That does not mean you do have Lyme. If you want to pursue Lyme as a possible diagnosis, then you want to get to an LLMD.
An LLMD is a term used that stands for Lyme Literate Medical Doctor. It's not a specific speciality, it just means a doctor who specializes in Lyme and believes in treating chronic Lyme.
If you post in seeking doctors forum, you should be able to get recommendations hopefully near you.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank You all, I was going to accept that maybe it was all in my head but I see too many things that are the same to dismiss this.
Posts: 5 | From Ohio | Registered: Jul 2007
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