What does this all mean? Does this sound familiar to anyone? I know that it is a clinical diagnosis, but am beginning to believe that I am depressed.

I still think I have ld - I could barely sleep last night - heart was palpitating knees hurt/ache/burn really badly, strange dry cough which gets worse when symptoms flare. Felt pretty good on thur fri then suddenly symptoms flare.

Has anyone experienced this?

Maybe it is anxiety?

as always thank yo so much for being here for us!

You do sound as if you have Lyme disease and possibly co-infections. Palpitations and a dry cough can be Babesia. You can have a negative test for co-infections and still have them, that's why you need an experienced LLMD to decipher what the symptoms point to.

Babesia and Bartonella overlap a lot symptom wise...I have a lot of your symptoms but have only tested positive for Babesia and not Bartonella though I am being treated for it.

Did you get a CD57 done ?- Lymies have low counts (usually under 10) or higher if co-infections are involved.

Hope this helps
Emma

a. You went to a Quack, not an LLMD - 'they only run bands if test is positive' is a dead giveaway - that's what the little AMA handbook tells them to do.

b. They most likely ran what's call a PCR for Lyme and 3 coinfections - Babesiosis, Erlichiosis, and Bartonella (aka Cat Scratch Fever). PCR looks for DNA of those bacteria, but it's basically like a fishing expedition.

Say you go fishing at the lake one day, and didn't catch anything. Does that mean there's no fish in the lake? Or doesn't it really mean you just didn't catch any fish.

You sound symptomatic - my guess is your magnesium levels are low - heart palps are a classic sign. I used to get them all of the time. The dry cough could be babesia or even Mycoplasma Pneumoniae.

Please post under Seeking a Dr. for an LLMD (Lyme Literate Medical Dr.) - you need someone with experience and real knowledge to help you.

Also, hard to tell what kind of tests you had. You need to get a copy of the results from the doc's office. Then post the info here. You are entitled to have a copy of test results. Ask for them.

Since you are using Quest, I am guessing you are not going to a lyme literate doc.

However, it sounds like you might have been tested for four different tickborne diseases. These are babesia, lyme, ehrlichia, and bartonella (sometimes called cat scratch).

It also sounds like you had the lyme ELISA titer, not the western blot. The CDC process for testing says use the ELISA first, if positive then do Western Blot. Unfortunately, the ELISA misses a lot of cases. There is no perfect test for any of these diseases, but some are better than others and some labs are better than others with tickborne diseases. A well informed doc in this field will know to skip the ELISA and go to western blot or some other kind of direct test that looks for the critters or their DNA, instead of antibodies (both the WB and ELISA look for antibodies).

If you can't get your doc to do a western blot and it doesn't like there will be any further action on their part, you need to contact a support group in your region, find a doc and get going. The only people who get diagnosed and treated adequately are those that are actively out being their own patient advocates.

quote:

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Originally posted by lou:
Tried to do a search for your previous posts, but not working, so I don't know what kind of doc you are seeing, etc.

Also, hard to tell what kind of tests you had. You need to get a copy of the results from the doc's office. Then post the info here. You are entitled to have a copy of test results. Ask for them.

Since you are using Quest, I am guessing you are not going to a lyme literate doc.

However, it sounds like you might have been tested for four different tickborne diseases. These are babesia, lyme, ehrlichia, and bartonella (sometimes called cat scratch).

It also sounds like you had the lyme ELISA titer, not the western blot. The CDC process for testing says use the ELISA first, if positive then do Western Blot. Unfortunately, the ELISA misses a lot of cases. There is no perfect test for any of these diseases, but some are better than others and some labs are better than others with tickborne diseases. A well informed doc in this field will know to skip the ELISA and go to western blot or some other kind of direct test that looks for the critters or their DNA, instead of antibodies (both the WB and ELISA look for antibodies).

If you can't get your doc to do a western blot and it doesn't like there will be any further action on their part, you need to contact a support group in your region, find a doc and get going. The only people who get diagnosed and treated adequately are those that are actively out being their own patient advocates.

Have you read the newby links. Lots of good stuff there, including material on testing.

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Seems, I've wasted everyone's time including mine - got my test results through hook and crook - looks like they just did the ELISA only and since that was neg. they did not bother to do the WB - says on my labs that "all pos or equivocal BB Antibody EIA test will be followed by the WB" Since mine was less than 1.00 they didn't bother with wb - even though this LLMD ordered it. I heard him say it to the PA.

quote:

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Originally posted by suki444:
I'm sorry I can't follow the info on your test results...

Did you get a CD57 done ?- Lymies have low counts (usually under 10) or higher if co-infections are involved.

Hope this helps
Emma

hi emma - i always liked that name!

scroll down to see reply to everyone that helped me.

they didn't do a CD57 - they did do a CD3,4,6,8,16,56,19 - which were all within "normal" range at the lower end of the range - which I'm sure means nothing.

I think you've hit on something, though - is it a fact that this is usually low? If it is, that should be one of the tests for lyme just even if for supporting documentation.

Thanks for trying to help me figure this out!!

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quote:

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Originally posted by lymeinhell:
Sounds like

a. You went to a Quack, not an LLMD - 'they only run bands if test is positive' is a dead giveaway - that's what the little AMA handbook tells them to do.

b. They most likely ran what's call a PCR for Lyme and 3 coinfections - Babesiosis, Erlichiosis, and Bartonella (aka Cat Scratch Fever). PCR looks for DNA of those bacteria, but it's basically like a fishing expedition.

Say you go fishing at the lake one day, and didn't catch anything. Does that mean there's no fish in the lake? Or doesn't it really mean you just didn't catch any fish.

You sound symptomatic - my guess is your magnesium levels are low - heart palps are a classic sign. I used to get them all of the time. The dry cough could be babesia or even Mycoplasma Pneumoniae.

Please post under Seeking a Dr. for an LLMD (Lyme Literate Medical Dr.) - you need someone with experience and real knowledge to help you.

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hi julie - thanks for your post! Am working on getting a good dr. very hard to do in WI. My GP has been pretty supportive or just sick of me complaining!

quote:

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Originally posted by lou:
Have you read the newby links. Lots of good stuff there, including material on testing.

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Forgot to add that I am reading everything I can get my hands on - am educating my GP (he didn't know that it reproduces about every 4 weeks)

Some of it is very confusing and contradictory - I am trying to stick with (for now)reading just data/factual type materials.