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Author Topic: Lymes disease--weird question, sort of funny story  (Read 266 times)

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Offline mydogisnamedslippy

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Lymes disease--weird question, sort of funny story
« on: February 10, 2014, 01:24:15 PM »
Hey y'all,

So, I am one of those hypochondriacs who has seemingly been tested for everything under the sun: MS, Lupus, vitimin deficiencies, MRIs, blood tests, ultrasounds etc...

I recently just switched neurologists b/c my last one was smart, but kind of mean. Whatever. So I found this new lady who I LOVE. She's totally awesome. She was like, "I also think your symptoms are anxiety related, but lets run EVEN MORE blood tests just in case." So, whatever she ran was negative EXCEPT part of the Lymes pannel. This is what I don't understand: She said overall Lymes came back negative except for one high value, which she says is "so insanely specific it will pick up any little nothing" (her words). So, they drew some more blood just to make sure I absolutely do not currently have Lymes disease.

SO, here's my question and also the funny story as promised:
Q: Has anyone else experienced confusing Lymes results (and hopefully not had actual Lymes disease)?


This weekend I became pretty convinced (at least for the moment) that most of my symptoms are anxiety related. Why you ask? Here's why: On saturday night I had a HORRIBLE panic attack. I have been having these headaches for over a week now that have been absolutly excruciating. Like the worst--they are what prompted me to find a new neuro and get a brain MRI. So, my loving boyfriend was like "maybe you are hungry...do you want a special sushi treat to cheer you up?" and I was like, "YES!" Sushi is my favorite food. So, he goes out and gets the sushi and comes back and gives it to me. He also got me some miso soup. I tasted the soup and it tasted awefull. Like the worst thing I had ever tasted. Like poison or something. I asked him to try it and he said it tasted fine and was like "I got it for you, just please eat it." So, i finished it. A little while after dinner I started to feel amazing. The headache--gone. Gone. My bed--the softest nicest thing ever. Turns out he had gotten some valium from a friend and dosed me with it. I DO NOT ADVOCATE DOSING PEOPLE WITH DRUGS, OR TAKING DRUGS THAT DO NOT BELONG TO YOU. However, I must say, it really really worked. It worked so well. Doctors have been trying to give me that stuff forever, but because I hate medication I am hesitant to take it. I still am not going to take it regularly, despite how good it made me feel.

AGAIN, DO NOT DOSE PEOPLE.

But, the fact that a psychiatric drug made me feel a lot better really turned me on to the idea that my symptoms were anxiety related. But now this weird blood test??

I don't know. I am confused.
Ideas, anyone???
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Offline mydogisnamedslippy

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Re: Lymes disease--weird question, sort of funny story
« Reply #1 on: February 10, 2014, 01:56:40 PM »
ANY ONE???
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Offline Sunlover

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Re: Lymes disease--weird question, sort of funny story
« Reply #2 on: February 10, 2014, 01:59:24 PM »
Not that PROVES it's all anxiety related!  Many times someone will take a pill and convince themselves it's working and it works, but you didn't even KNOW that!  It's a good thing you ate it anyway or you'd never know.

I know nothing about Lyme disease, so I'm sorry, I can't help you there.
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Online wegngis

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Re: Lymes disease--weird question, sort of funny story
« Reply #3 on: February 10, 2014, 02:47:01 PM »
I've been tested for Lyme by a couple different laboratories, including one that is world-renown.  Both came back negative, however the "fancy" lab came back as neutral, meaning they could neither confirm nor deny I had it.

What does this mean?  A visit to another specialist said it like this:  basically, you don't find Lyme itself, you find the antibodies.  If you get enough specific antibodies in certain areas, they can reasonably say you have Lyme.  There are many of these they test for, it sounds like you have antibodies that basically cross-reference one of the Lyme "bands."  All this means is you have antibodies.  Before you freak out, like I did, throughout your life you are exposed to all sorts of diseases and bugs.  Your body remembers these by building antibodies.  These stay with you throughout your life, which is why vaccinations work.  You've got the tools to fight off that infection.
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

Offline mydogisnamedslippy

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Re: Lymes disease--weird question, sort of funny story
« Reply #4 on: February 10, 2014, 04:02:36 PM »
Wegngis,
Thanx for your reply!

I was seriously hoping that someone who had gone through some lymes thing would respond. I have some questions for you:
So, did you have lymes disease or not?
Does this mean I have antibodies to something else? Or antibodies to lymes, but that they fought it? Like, for example, I have a friend who had Hep-c, but his body was able to fight it so now he has antibodies but not the actual virus. Is it like that?

My doctor doesn't think I have lymes, so I'm still a little confused about all this? I kept calling her for silly reasons and she was really reassuring in her office, so I don't really want to keep calling her back if I don't have to.

I know your not a doc, but sometimes I feel like people with actual experience can provide equally pertinent info.
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Online wegngis

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Re: Lymes disease--weird question, sort of funny story
« Reply #5 on: February 10, 2014, 04:13:12 PM »
So, did you have lymes disease or not?

"They" don't think so.  This includes Lyme specialists.

Does this mean I have antibodies to something else?

Yes, I would bet on that you have antibodies to something else, not Lyme specifically.  Apparently there is a lot of crossover in what they test for, which is why it is ambiguous sometime.  Who knows what it is from, but it could be anything from a cold virus to chickenpox to some weird mold you ate when you were 9.  That just means your immune system is doing its job.
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

Offline mydogisnamedslippy

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Re: Lymes disease--weird question, sort of funny story
« Reply #6 on: February 10, 2014, 04:45:30 PM »
Thanx Weg!!
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Offline patmob

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Re: Lymes disease--weird question, sort of funny story
« Reply #7 on: February 11, 2014, 06:15:42 AM »
I've actually had Lyme Disease - the tests aren't great from what I understand.  Lots of false-positives and false-negatives which is why if they think you have Lyme they tend to put you on the anti-biotics right away anyway.

If you felt fine otherwise but the test said you had Lyme - you probably don't have Lyme.
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