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Old 11-03-2007, 10:29 AM   #1
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Q about results

I have been suffering from Lyme related symptoms for over two months....Lyme tests keep coming back neg. but the 1st time the dr put me on doxyc. anyway (which I felt great while on it) as soon as I got off it, a few days later, I felt like crap again. The latest test came back with only one strand on the Western Blot positive....what does this mean? WIll I finally get treatment again? I am going to an infectious disease dr to get the help I deserve
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Old 11-03-2007, 05:07 PM   #2
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Re: Q about results

Hi Mepmom. Which lab did your testing? Which band was positive?

No Lyme test is completely reliable, and results can vary by lab. Some people who have Lyme test negative. On the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot.

Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.

Often infectious disease doctors are not the best to see for tick-borne illnesses unless they specialize in Lyme. The doctor in Wilton comes highly recommended.

 
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Old 11-03-2007, 08:17 PM   #3
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Re: Q about results

its so frustrating, aggravating and hard because I was treated for Lyme with Doxycycline two months ago and felt great on it....4 days or so after coming off of it, I felt the same achyness, etc again.
Since my tests were neg. they wouldn't treat me again for it and instead gave me every blood test known to man and still no answers. Its so frustrating to be told that the dr. isnt sure what it is, etc. They took a recent lyme test with the western blot and only the one strand came back positive so she wants me to see an infectious disease dr named Grace Kim in Bridgeport, CT.

I feel as if I am crazy.....
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Old 11-04-2007, 06:04 AM   #4
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Re: Q about results

Hi Mepmom. You are not crazy, dealing with Lyme disease is crazy. In my opinion, the most important thing someone who has or may have Lyme can do is see a Lyme doctor, the sooner the better. Not doing so is like seeing a podiatrist for a cardiac problem. You also need to be tested for the co-infections.

As I stated previously, infectious disease doctors are not usually the best to see.

Which band is positive on your Western Blot? Which lab did the test? This is relevant.

What dose of Doxy did you take, and how long did you take it?

 
Old 11-04-2007, 07:29 AM   #5
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Re: Q about results

Quote:
Originally Posted by ticker View Post
Hi Mepmom. You are not crazy, dealing with Lyme disease is crazy. In my opinion, the most important thing someone who has or may have Lyme can do is see a Lyme doctor, the sooner the better. Not doing so is like seeing a podiatrist for a cardiac problem. You also need to be tested for the co-infections.

As I stated previously, infectious disease doctors are not usually the best to see.

Which band is positive on your Western Blot? Which lab did the test? This is relevant.

What dose of Doxy did you take, and how long did you take it?
1.) I was tested for the co-infections and they were neg.
2.) not sure which band was positive..all the nurse told me was "one band was positive and you need at least 4 to be considered positive for Lyme"
3.) The lab my blood was sent to was Quest but according to the nurse at my dr. Quest sends it out
4.) I took 100mg twice a day for three weeks
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Old 11-04-2007, 07:30 AM   #6
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Re: Q about results

oh yeah, and I wanted to thank you for helping me and for letting me know I am not crazy. I am normally a healthy, active person and since this came over me, I have been moody, depressed and have no energy. My Thyroid is fine, everything comes back "fine" according to the drs out there...
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Old 11-04-2007, 08:36 AM   #7
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Re: Q about results

Can I just second the Dr. in Wilton/Ridgefield CT? If you're going all the way to bridgeport for an ID specialist....it would seem to make sense to see the right person, an LLMD.

I saw the Dr there and he was fab, I'm just awaiting some blood tests and I have my MRI on the 12th.

 
Old 11-04-2007, 09:24 AM   #8
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Re: Q about results

I have heard of him, but I heard he doesnt take insurance and is quite expensive. I know this is my health, but I have no idea where I would get that kind of money for him.
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Old 11-04-2007, 09:33 AM   #9
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Re: Q about results

i know hon, it sucks.

I saw him a few weeks ago and i'm submitting the claim back to my insurance and i'm hoping they will cover it past my 300.00 out of network deductable.

I've had this for 8 years and we want to start a family so i need to be sorted pronto.

 
Old 11-05-2007, 08:39 PM   #10
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Re: Q about results

Hi Mepmom,

Just wanted to say that you're not alone in the confusion of trying to figure out what's happening to you. My situation's been very similar to yours, and it's been frustrating. But I've found a lot of guidance and help on this board, and I'm trying to keep my head up and get to the bottom of this even if the drs are making it hard. I also think I might take the financial plunge and see an LLMD, even though I have no idea how I'm going to be able to afford it. I wanted to wish you the best of luck in tracking down an accurate diagnosis of what's going on and getting back on track to health. Here's to a speedy recovery for all of us.

 
Old 11-06-2007, 05:36 AM   #11
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Re: Q about results

thanks so much for your kind words ((HUG))
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