Topic: Anyone feel they have a false positive Lyme diagnosis?
sparkle7
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posted
I guess the thing with parasites - is that we may be infected with several types. So, it's good to try different herb combinations (or drugs, if you more inclined towards that).
With testing, it would be good to know a ballpark percentage of accuracy for each test. That way we could gauge the accuracy. Since the symptoms can be many different things & the tests are not accurate - It's really difficult to know if the drugs or other treatments we are doing are really working.
re: Or perhaps Lyme + friends has been treated as best as they can be, and whatever symptoms remain is from damage done, and further meds won't help a whole lot?
I can see that we may be dealing with damage done by the various pathogens after treatment. This could be true...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by seekhelp: Kim, send me a PM and I'll try to supply some info for you on mitochondrial issues.
How do they test for mitochondrial problems? My cardiologist was interested in getting me tested, but the only tests she knew of were genetic. And unfortunately my insurance wouldn't pay for them and they were very expensive (so I never got it done).
I guess a muscle biopsy could detect a mitochondrial issue too, but I have a feeling most insurances wouldn't pay for that either.
Posts: 584 | From NY | Registered: Feb 2009
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lululymemom
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quote:Originally posted by billclo: I was recently diagnosed with Bartonella. My doc thinks that the Bart can stimulate production of antibodies to all kinds of things besides Bart. He's speculating that the Bart can confuse the Lyme testing; he said that he was probably going to be treating the Bartonella/conifections first and then concentrate on Lyme's in new patients.
Myself, I was treated for Lyme, we thought we got rid of it. After a few months I started to feel sick again. After nearly 3 years I was diagnosed with Bartonella. A recent retest for Lyme's showed I'm still CDC-positive. We're not sure at this point whether it's a false-positive due to the Bartonella, or my Lyme's has relapsed. We have to wait til treatment for the Bart is done and wait a few months and retest to see if the antibodies go down or not. Most frustrating to be sure...
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lululymemom
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Could it be possible to have Bartonella in the absence of Lyme?? I have never had a tick bite, don't ever recall the typical Lyme symptoms but tested positive by IGENEX and CDC standards. Just now, seen photos of Bartonella bumps which is what I have had for the past 10 years. I have all the Bartonella symptoms but don't respond to typical treatment for Lyme.
I have always had cats and had bites from them as well.
I haven't found anything online that even addresses this... anybody have any insight?
posted
It sure is possible to have Bart w/o having Lymes. My doc has several patients who have Bart and don't seem to have Lyme (though with the Bart confusing the Lyme testing, I wonder about how sure he is of that).
Posts: 131 | From PA | Registered: Aug 2007
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lululymemom
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This would be a good question to pose to the Igenex Lab.. It seems plausible that having an active Bartonella infection could somehow influence the Western blot test.
Billclo: Have you had any success or improvement treating only the Bart?
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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WildCondor
Unregistered
posted
Testing is almost all total garbage. Lyme is a CLINICAL DIAGNOSIS. Based on response to treatment and exposure to ticks is how you should be monitored. The rest is who knows what.
quote:Originally posted by lululymemom: This would be a good question to pose to the Igenex Lab.. It seems plausible that having an active Bartonella infection could somehow influence the Western blot test.
Billclo: Have you had any success or improvement treating only the Bart?
Bunch of success. Prior to treatment, I had very low energy - had to take an hour nap after lunch to be able to do anything the rest of the day (having to take care of a 2-year old is taxing to say the least). I also had classic Bart skin streaking, and I'd also get these funky red areas where pressure was applied to the skin that would take 4-6 days to fade (doc didn't know what to think of them). I also had significant mental clarity issues.
I started treatment with Zithromax 600mg, Rifampin (started at 300mg/day, ramped up to 900mg/day now), and Boluoke 4 caps/day. I'm on month 3 of an estimated 9-12 month treatment.
I have had some issues with the Rifampin messing up my hormones (felt like I was PMS'ing all the time), acne, decreased libido. After a while it's stabilized and I feel better. A nice benefit has been that the Rifampin appears to be lowering my cortisol levels, which were slightly high before. I can now lose weight, which was very difficult before treatment started.
Energy has gone up - it peaked in month 1 of treatment, went down slightly since (that's probably due to the Rifampin). Mental clarity is way up, the red streaks are rare now, and while I still those funky skin splotches when I put pressure on the skin, they fade much faster now. I only need to nap occasionally after lunch, and when I do, it's a quick 15 minutes and I'm good to go the rest of the day.
I think I'm making good progress, though it remains to be seen if it's going to cure me or not. I sure hope so. Posts: 131 | From PA | Registered: Aug 2007
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posted
I had a positive Elisa test and I had the Western Blot test today that's being sent to Igenex. I understand that Lyme is a clinical diagnosis. I am anxious waiting for an answer. Does anyone know what the probability is for a false positive on the Elisa??
Posts: 8 | From Michigan | Registered: Jul 2010
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sparkle7
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Not sure about a false positive on Elisa test... Maybe someone else knows.
Yes - I think it is very possible to have bart & not have Lyme! I'm pretty sure you can get bart from fleas & maybe other insects. It's called "cat scratch fever".
Many years ago (over 30), they thought my mother had cat scratch fever - it turned out to be lymphoma...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nefferdun
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Just want to clarify I did not originally have a test - I was treated because of symptoms and I could remember the rash.
I got the test three years after the bite and I was CDC positive. But I was feeling much better lyme wise. My bartonella symptoms were raging but the lyme was quiet.
I feel my body's immune system was working against the lyme keeping it under control. As lyme can disguise itself making it unrecognizable to the immune system, that would be why you would be very sick and test negative. The test is for antibodies, not that actual parasite.
So it just makes sense to me that having a strong antibody response to borellia could mean I am fighting the disease and NOT as sick as the person who tested negative because their immune system has not figured out where or what the pathogen is, so borellia continues to rage through their body.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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We're not sure at this point whether it's a false-positive due to the Bartonella, or my Lyme's has relapsed. We have to wait til treatment for the Bart is done and wait a few months and retest to see if the antibodies go down or not. Most frustrating to be sure... 
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