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NEGTIVE FOR LYME RESULTS????? HOW IS THIS POSSIBLE?

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Posted 1/7/2011 6:04 PM (GMT 0)

I'm so confused, I wanna sream!  My doctor's office just called and said my 2nd test is negative.  How is that possible?  Is it me?  Why am I not getting this?  If the first test was positive for Lyme how can the second be negative.  Isn't the way it turns out positive due to antibodies that are there forever?  Can someone please break this down for me and help me understand.................Willie

Posted 1/7/2011 9:09 PM (GMT 0)
What test did they run? Ask for copies. If it was Elisa, it is extremely unreliable. If it was western blot, you will need a copy so we can help you read it. The test result may be negative by CDC standards but it may very well show you do in fact have lyme. In either case, lyme is a clinical diagnosis and the blood work is not sufficient for diagnosis. Call immediately adn get a copy and post your results here. This is the problem with lyme is that many of us go undiagnosed because we do not know there is a governmental snag in the lyme testing procedure. also, if your immune system is down, you may not produce antibodies to lyme, thus they wouldn't show up in blood.
Posted 1/7/2011 9:20 PM (GMT 0)
I will get a copy as soon as possible. It's snowing again so I'll be homebound for a couple of days. I'm really scared. I'm a single mom and I don't want anything to happen to me. I wish I had something a little easier to diagnose.........Willie
Posted 1/7/2011 9:43 PM (GMT 0)
willie0521

Sounds like to me this Dr is playing games cuz he doesnt want to treat you for whatever reasons some drs are scared.
But if you had a positive test you NEED to get a copy of that from them so when you find the right dr to help you, you

will have the proof of the disease and get the proper treatment. It helps with the insurance on getting you approved for treatments needed now and in the future. I know its been told to not see an infectious disease dr.

But if thats all there is in your area then go for it because there are some who understand lyme and will go the long haul with treatments. Im very lucky I have a LLMD who is in the Infectious Disease field and is involved in research of this disease.

First time I was refered to an infectious disease dr and after a yr of treatment with IV and Oral meds he basically told me I had to find a way to deal with my what he called Post Lyme Syndrome. I was not hearing that and found another LLMD whom was an Infectious Disease Dr. and he is the one that will go the long haul.

And the way I know that is I go in wkly for my IV meds and picc line bandage changed and there are so many that come thru that office that have been dealing with maintenace IV meds for over 15 yrs.
Posted 1/7/2011 9:58 PM (GMT 0)
Dear Willie,

I'm so sorry that you're having to go through this! I know that the ins-and-outs of Lyme testing can be VERY frustrating!!

Springsjean gave you very good advice about getting a copy of your test; try to always get copies of any testing done on you.

In any case, as you probably know, the ELISA and Western Blot tests do not test for the bacteria itself. They only test for the presence of antibodies to the bacteria.

There are many reasons why these tests are inadequate/just plain BAD tests! One of the biggest problems is that they assume that everyone's body will produce the SAME antibodies at ALL times no matter what. This is absolutely not true!

The blood tests won't always find the "right" antibodies or enough of the "right" antibodies, because everyone's body is different and reacts differently to illness and the responses also change over time.

Here are three reasons I can think of off the top of my head why a Lyme test could be positive one time and negative the next:

1. Even if your body IS producing the "right" Lyme antibodies, they may all be busy doing their jobs, which means they are "attached" to the antigens, i.e., the various surface proteins of the Lyme bacteria. When the antibodies cling to and attack the different parts of the Lyme spirochetes they form "complexes". The blood tests can only detect the antibodies that are free-floating in your blood, they won't see the ones in complexes. So the free-floating antibodies detected the first time by your positive test may all be in complexes now, which explains the negative test.

2. As springsjean already suggested, your immune system may be too weakened to make the antibodies right now. Even if it was making them a few weeks or months ago, it may not be able to make them now because Lyme suppresses the immune system.

3. If you have Bartonella in addition to Lyme, Bart is actually able to go in and "turn off" the immune system's ability to make antibodies to itself AND to Lyme! That's why so many people who actually have Bart test negative for it. It's possible that in the interval between your two tests the Bartonella actually altered your immune system and caused the second test to be negative.

Good luck with everything....try not to stress too much over this! A good LLMD understands why tests can change from positive to negative. I hope you are seeing an LLMD!

Take care,
JoAnn
Posted 1/7/2011 10:36 PM (GMT 0)
Thanks guys!

I am amazed at how much knowledge you all have about this complexing disease. Everything you stated makes so much sense.

Thank you for your advise. I am going to p/u a copy of the blood work next week. I'm also going to contact the LLMD that you gave me springsjean.

It saddens me to think of how little I know about what's been going on inside my own body. I can't sleep at night at the thought of having this illness and not having the ability to really do anything about it right now. Each passing day without treatment is like an opportunity lost.

Thank you all for your continued support and for sharing the knowledge you have obviously obtained through your own heartache.........Willie
Posted 1/8/2011 12:52 AM (GMT 0)
Each day passing is NOT an opportunity lost. You are doing a tremendous job of educating yourself, learning about your body, deciding on what is the best treatment. It takes time to make an educated decision. Perhaps there are a couple of natural products you could be taking now to strenghen your immune system. Do see the LLMD to help you make the best decisions for you.

This disease can be dealt with, do not let it keep you awake at night (you need the sleep to help with the healing). Remember, this is ONLY a disease. Yes I know that it is a nasty one, I am in no way minimizing that. But the body was created to handle Lyme's and all other diseases. But in our bodies something went haywire and is not functioning properly. It can be fixed. Remember mindset is a big part of the battle. You do a wonderful job of encouraging others, now take some of that ability you have and encourage yourself. I am sorry that you are alone in this (but it sounds like having your ex around would have only made things worse.) You are cherished!

Lifting you up,
Jeanne
Posted 1/8/2011 12:43 PM (GMT 0)
Thank you Jeanne, Your response brought tears to my eyes this morning. You're right. I will try to do my best each day and learn and not give up.

I'd never heard anything about the body being created to handle this but I take great comfort in knowing that. You've helped me put things in perspective and not to feel as though it's already beat me.

As for my ex, you are absolutely right! I felt just as alone when he was around.

Thanks for lifting me up..........................................................Willie
Posted 1/8/2011 1:31 PM (GMT 0)
Wonderful post and persepective, wacko woman. Very uplifting.

And....as always....superb info from everyone! Each and every post on this forum helps me too, to learn and maintain a positive attiude which we all need.
Posted 1/8/2011 9:44 PM (GMT 0)
Willie,

You are welcome. That is what we are all here for - to lift each other up when we cannot do it ourselves.

Be sure and post your test results when you get them. I am not so good and understanding how to read the results, but a lot of people here are and can help with that.

Absolutely, positively our bodies were created with the ability to heal. You have hit a large bump in the road, and need some extra help. Good for you for seeking it.


And I will continue to lift you up.
Jeanne

p.s. Cat111, I am so glad you found something uplifting in my words. I am blessed by that. I hope this finds you still feeling better????

Post Edited (wacko woman) : 1/8/2011 2:51:16 PM (GMT-7)

Posted 1/8/2011 11:47 PM (GMT 0)
Wacko woman,

Yes.....feeling better in part. Stiff neck is nearly gone after having it for over three months! So that's a relief.

Other improvements as well except for the dizzy (non-vertigo) feeling in my head. Weird, to say the least.

Seeing new doc again next week to discuss my progress.

Thank you for asking!
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