i have researched for a year and nothing but Lyme and Barts fits my symptoms.
My ID docs 3 in the past year do not know what is wrong with me.
I feel better on ABX so it is not a virus. hiv hep c +
could my virus be causing false results?
should i try another lab..?
i am so tired again. just can't wake up or stay awake for long. my pain is better on the plaquinil.
i want treatment for something. i can't keep living like this. as you all know i feel my life is flying by and i can't do ...anything i want. simple chores, cook clean with some energy and focus would be lovely at this point!
"Double starred bands" means two asterisks (**) to the left of the 'band' number, like "**31" is a double starred band.
The + signs mean a positive result on that 'band', and the more plusses there are, the stronger the reaction.
IND means indeterminate: maybe yes, maybe no.
The art of medicine comes in at this point to interpret the bands and their configuration. And remember, these bands reflect the reaction of your immune system to Lyme. Some people have stronger immune systems than others, some are weaker, and over time, the positive response tends to fade -- the longer you have been infected, the weaker the response on this test overall.
That said, here are the notes on the IgG bands (which mean the immune reaction that occurs longer term after the infection (IgM bands show positive earlier in the course of the infection):
18 kda ++ ==>> this is 'highly specific to Lyme' meaning that no other infection but Lyme will cause this band to light up
**23-35 kda -
28 kda -
30 kda -
**31 kda -
**31 kda IND ==>> IND (indeterminate) means there is a postive reaction on this band, but a weak one BUT the big news is that this band is positive ONLY in a Lyme infection
**39 kda IND ==>> same comment as on band 31 above
**41 kda ++ ==>> might be Lyme, might be another spiral-shaped bacterium (of which Lyme is one)
45 kda -
58 kda + ==>> may be related to Lyme
66 kda -
**83-93 kda -
IgG bands have the same meaning as the IgM bands above, they just occur at a different point in time. Because your immune system ramps up early after an infection and then trails off, and IgM reaction is earlier than an IgG reaction, a doc can look at the bands and gauge where you are in the infection.
So. I'm NOT medically trained, but if my doc read these results as negative, meaning no evidence of Lyme, and refused to treat me, I'd be ready to get a second opinion from another LLMD.
So congratulations, I think? Looks like it might well be Lyme.
Were you tested for any co-infections that the Lyme ticks often carry? Those are often a quicker treatment than Lyme, and a doc might treat the coinfection(s) first, depending.
Dr. Burrascano wrote a number of years ago about how many Bartonella patients were testing negative, even when he could see the little buggers on a glass slide in a blood smear. He started calling them "Bartonella like organisms."
Here is an article about a prominent Bartonella researcher trying to make a better test, a culture test for Bart. He's at NC State's vet school, but hopefully the test will be available for humans soon. He also talks about the trouble with testing.
I tested positive (actuallt, I was "not negative") on the b.henselae antibody test, but negative on the FISH test. I was diagnosed based on the antibody test.
On your Lyme results, here are two thoughts: I have read that some LLMDs will diagnose based on Band 18. Some say it is unknown, others say it is Lyme specific. And some docs will consider a IND result as a positive. An Indeterminant result means they see something on that band, but the band didn't stretch far enough to the level of "positive."
If you followed either of these lines of thought, you would consider your WB positive for Lyme. I would guess that only an experienced LLMD would diagnose you with your results. Since the WB is essentially equivocal, the CD 57 becomes significant, as do your symptoms. Given that you began to feel better on abx, I would personally be convinced of Lyme.
BTW, my IGM was positive on Bands 18, 31, and 41. My IgG was IND on 31 and pos on 41. No mainstream doc would have diagnosed me with that. I was CDC negative, and they say to ignore the IgM WB after a month of symptoms. They say any positive IgM after a month is irrelevant and a false positive.
Do you have an LLMD lined up? I don't think your ID doc will say you have Lyme. They are just too strict on the testing.
maybe i will ask for a Bart AB test.? didn't know there was one.
i am taking IND as a positive. i am pretty sure my cd57 was 100, will check on that. since i take antiretrovirals for hiv i wonder if it is screwing up the tests.
i read EBV, HSV and hep can cause tests to not be reliable so i need a clinical dx.
when i went off my antiretrovirals for 3 months last summer that is when my problems started. when my immune system fluctuated.
went back on hiv meds and still got worse and worse all fall and winter. hummm
Rather than being cause and effect, it could have been a coincidence that you went off your retrovirals "last summer" and "that is when my problems started." It might not have had anything much to do with your immune system fluctuating, but instead was when you got infected or reinfected with Lyme and/or its little friends.
Summer is a common infection time, because the ticks are out to party in those long warm summer days and evenings.
The name of the Bartonella bug most common with Lyme is b.henselae. (That's what it usually says on lab order forms.) It is known as Cat Scratch Fever. The "official" belief in the medical world is that ticks don't transmit it, even though they do carry it. They say this because it lives in a different part of the tick's body than Borrelia. (A huge assumption if you ask me!) I guess it is possible a whole bunch of people have asymptomatic b.henselae, and it becomes a full blown disease after a Lyme infection. I am betting on the ticks. Note: ILADS believes it is tick borne.
Another Bartonella species is starting to turn up in Lyme patients also: b.quintana. It is known as Trench Fever and usually causes lower leg bone pain. In WWII, they also called it Shin Bone Fever. The current belief on this species is that it only shows up in the homeless and others living in poor hygiene as it is believed to be transmitted to humans only by the body louse. Since other Bartonella species are transmitted by a couple dozen other insects, I don't see why this one can't also.
There are several Bartonella species known to infect humans that we don't have commercial lab tests for. This is why sometimes it needs to be a clinical diagnosis.
i was shocked when the barts came back neg as all my symptoms lead to that.
I have had many cats, dogs horse (passed away 2 years ago)
lice we battled 2x when my son was in grade school (1999-2000)
i get bit by horse flies, black flies had many tick bites.. we live in the woods. Vermont. lots of lyme.
i see the llmd tomorrow and will see what he thinks of the tests.
You have certainly had a lot of opportunities to be exposed to Bart (although I think the body louse is different than the head louse).
I was shocked that my 3 Babs tests came back negative and the Bart came back positive. Other than the predominance of neuro and gut symptoms of Lyme, the only other Bart symptom I had was anxiety, which could also be caused by Lyme. It just goes to show you how tricky and evasive these tick borne diseases can be.
Eventually I realized the Bart anxiety and Lyme anxiety were a bit different. The Bart anxiety would suddenly appear and for no reason. The Lyme anxiety led me to overreact to stressful things and to get agitated. At least this is my conclusion after the Bart has been treated.
I was sure I had Babesia because of my chronic shortness of breath and air hunger. But I tested negative 3 times, did not respond to herbals for it, and began to notice that my shortness of breath waxed and waned along with a couple Lyme symptoms. We finally concluded I didn't have Babs.
I hope your LLMD will be willing to treat Bart on symptoms.
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