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How certain were you of Lyme?

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Posted 3/7/2011 6:42 PM (GMT 0)
Hi. First post here. I guess like everyone on this board I am feeling nervous and anxious regarding these new symptoms that have either popped up, creeped up or leave only to return.

I have done research on this disease (which lead me to this forum which is AWESOME btw) and I definitely do display some of the characteristics. The first were flu like symptoms, sore neck, general achiness. I assumed it was a mild flu as it was flu season (no rash).

But now a few months after, I have experienced everything from brain fog to dizziness, muscle jerks, sensitivity to light, fatigue which came from nowhere and more. My muscles feel weak and I am unmotivated to do anything (VERY unlike me) as well as very anxious. I used to be so full of confidence and life. I also feel like it's all just spiraling - new symptoms just appear without warning. This is the most scared I've ever been.

SO

Here's my question - how certain of your lyme were you? Or did you, like me, begin to suspect it after many visits to many doctors revealed nothing?

I have yet to take a blood test for lyme, but plan on seeking out an LLMD very soon.

Posted 3/7/2011 8:29 PM (GMT 0)
I think many of us have gone from Dr to Dr looking for an answer.

Then with Lyme testing the way it is, even then you still question.

Your best bet is to get to a good LLMD, get some testing done, a clinical diagnosis and start some form of treatment and see where you are then.

It really is a puzzle, and you have to keep on putting the pieces together!
Posted 3/7/2011 8:32 PM (GMT 0)
I doubted it and doubted it and unfortunately this can lead to getting worse and having it become much harder to treat. The quicker you get an EDUCATED opinion by an LLMD, the better off you will be.
Posted 3/7/2011 8:35 PM (GMT 0)
Thank you for your responses.

What's the deal with the Igenex test? Is it the be all, end all of lyme blood testing?

If I spend the exorbitant amount of money on it and it comes back negative, am I definitely negative?

I know other tests come back negative a lot of times, right?
Posted 3/7/2011 10:53 PM (GMT 0)
No, you can come back negative from Igenex, but have specific Lyme bands positive. So, do not base all on a positive Igenex test. Many of us here have been treated based on symptoms and specific Lyme band positives from Igenex.

Yes, standard Lyme tests do come back negative alot of the time, when the person in fact does have Lyme.
Posted 3/8/2011 1:10 AM (GMT 0)
your illness sounds like mine started but i did have the rashes (for which i tthank God as the scientific diagnosis of this disease is poor at best? )
My flu was pretty violent, but i had the flu then the neck which I could not move as well as the other myriad of symptoms that would make a normal human consider they are nuts. i also had a lot of electrical shock feelings and could not eat w/o losing it.

I hope u see a lyme literate dr. I know the people here can direct u to a very good place to start, I've never met such supportive, as well as well researched people in mi life. (And i went to a very expensive private college LOL)

They will help u here, never be shy they are awesome.
Posted 3/8/2011 1:16 AM (GMT 0)
oops i forgot

in my eyes u do sound very suspicious of possible lyme or one of its co-infections.  A good dr. will not rely on only lab tests, it is a clinical diagnosis

i think my lyme dr. saved mi life i should at least write him and tell him, a good idea : )   good luck AND God speed!!

Posted 3/8/2011 7:24 AM (GMT 0)
i didn't expect lyme at all.

i didn't know anything about lyme before i got sick. and i never really knew anyone who had it so i thought it was rare. a thousand things went through my mind but never lyme. i pretty much just thought i was dying.

but if you just randomly got sick out of the blue and havent felt quite the same since... it definitely could be lyme. thats what happened to me... i got sick with this weird flu/panic attack combination one night... i felt a little better the next day but something didnt feel right. i felt strange. and that feeling slowly got worse and worse for 2 years until i was finally diagnosed. obviously the earlier you catch it the better... good luck to you.

-MysteryLyme
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