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Tested positive again!

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Posted 3/14/2011 2:38 PM (GMT 0)
Hi all,

I'm back. I tested pos. for Llyme about 7 months ago, treated with Doxy then tested again and it cam back negative. My doc said I most likely didnt have lyme. After having the same symptoms a few weeks ago, fatigue, bruising, achy legs and cramping I was tested again and it came back positive again. My doc says he wants to test me again in 3 weeks and use another lab. I'm so confused, do I have lyme or not? If ts not lyme what the heck is it? Has anyone else experienced this?

abby

Posted 3/14/2011 5:49 PM (GMT 0)
Hi Abby,

You really need to get in touch with a Lyme Literate Doctor. The diagnosis for Lyme Disease should not be done by test but clinically. Even the CDC says this -- that statement should be on your test results.

Odds are you were not treated adequately before or you were reinfected. Please take positive steps to address this properly. You need to be your own health advocate.

BTW Welcome to the forum, sorry you have to be here.
Posted 3/14/2011 6:43 PM (GMT 0)
Yes welcome to the forum and definitely find a real tick borne specialist lyme literate doctor.

Just hearing your story makes me want to ask for your doctors name.

It is doctors like this that are one of the biggest parts of the problem.

First of all he UNDER treated you and second of all he should be thrown in jail
for sending you away for a few weeks while looking for another lab.

The RIGHT thing for him to do is call a lyme literate doctor and get some instructions
or really refer you to one.

He is endangering your life right now by reacting to this the way he has.

There is a window of when you have the best chance of being healed with antibiotics and he just threw you out of it.

What state do you live in? You have to be aggressive about finding a real lyme doctor immediately.
Posted 3/14/2011 10:32 PM (GMT 0)
Positive Lyme test usually indicates the person has Lyme; but a negative test does NOT say anything about the status of one's Lyme infection because of the numerous difficulties in detecting the antibodies that the tests are looking for. In other words, a negative test does NOT mean that there is no Lyme infection.

Welcome aboard, and I agree with the others - you need to find an LLMD right away.
Posted 3/14/2011 11:10 PM (GMT 0)
I repeat the sentiments of the first three posters--see a LLMD and get a proper diagnosis asap. If you have Lyme disease he/she will start you on a protocol that will help you get on the path to healing.

The longer you wait to do this, the harder it is to treat this disease, and the more you will suffer long term effects. This is one evil disease. Fear it and fight it aggressively. See a LLMD immediately. They are the only doctors who are qualified to diagnose and treat Lyme disease and the ugly co-infections that often accompany it.

Gary
Posted 3/15/2011 2:16 PM (GMT 0)
Thank you all. I just cant seem to get any answers from my doc. Just made an appt. with a LLMD. Hopefully I can get the info I need from him.
Posted 3/15/2011 3:42 PM (GMT 0)
How far off is this appointment? If it is more than another week I would give your present "most likely not lyme" doctor the lyme doctor number and have him call for ADVICE and CONSULT. Maybe he can get you in sooner. Be aggressive about your own health care. no one else will do it for you. How many books do you have on lyme disease. ? go to lymebook.com and pic any 3 books.
Posted 3/15/2011 7:27 PM (GMT 0)
My appt is Friday, thank god so I wont have to wait too long. I'm just curious did you all have a tick bite? I didnt. My MD doesnt really think that I have Lyme, he thinks it may have just been some virus, last year and now again. Also, I was on Doxy the frist time I tested pos. and hade the symptoms. I was sick for the entire three weeks that I was on it, is that common?
Thanks again. This forum is great.
Posted 3/16/2011 2:27 AM (GMT 0)
yes you were sick while you were on the abx.that is called herxing.

make sure you keep tuned in here ,abbacy,we wanna know you got to the right doctor and no more getting the run around. Friday is almost here. You keep writing in anytime. Sometime it hard to find people who understand that you are really sick and the most important thing is to not be in denial yourself. this is why you need to get tot he right doctor so you will know the score.
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