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Posted 4/26/2012 5:16 AM (GMT 0)
Well, I got my results from two different labs. For the most part it is negative for Lyme. I really don't know how to feel about it. My doctor wants to continue to treat me for it because he doesn't have confidence in the testing. He says he has no other explanation for my illness. The bizarre rash I have on my knuckles and the face, neck rash he feels is a secondary infection of bartonella. I am not sure what to believe even. He wants me to take two weeks of Zithromax and then another antibiotic, starts with a c, I think.

How do you push through the awful antibiotic reaction when you don't really know what you have going on in the inside?

My doctor said that my body doesn't recognize the bacteria so it doesn't make antibodies for it, so it doesn't show up. I am so frustrated because I want a clear cut answer.

I have been asking my friends if they would choose to continue the treatment if they were not sure of the disease, and most of them have asked me What do you got to lose? Seriously...dont know.

Posted 4/26/2012 6:00 AM (GMT 0)
I just posted a new topic "can we prove lyme", because I'm dealing with the same question. My test was negative, but my llmd "diagnosed" me anyway and started me on doxy. After a few weeks (no good or bad reactions), I stopped because I just haven't fully bought into the idea that I have it. I have the unknown! I want to know for sure!
Posted 4/26/2012 12:06 PM (GMT 0)
Have you been tested through Igenex? Do you have the results of your test? Was it just an Elisa or was it a Western Blot? The reasons for asking are because if you were not tested through Igenex, the testing is grossly unreliable. If you have the results of your test, post them here so we can see if there are any significant bands. If it was not a western blot and only an elisa, its uselss.

Because of the unreliability of lyme testing, it is imperative to have a clinical diagnosis. Even the CDC clarifies that the current lyme testing is for surveillance purposes only (whatever that means) and you should have a clinical diagnosis.
Posted 4/26/2012 3:14 PM (GMT 0)
I had one positive band, 41, is what I remember about the results. western blot from stony brook university.
I have already had 1 month in doxy, 1 week on flagyl and new med to fight off the "bartonella" rashes that I now have.
He said I could do one through Igenex but he is not confident that it would show up there either. He wants to treat based on symptoms and make a clinical diagnosis.
Posted 4/29/2012 2:29 AM (GMT 0)
You need to watch the documentary "Under Our Skin" it is an easy to watch documentary all about lymes disease. It explains the tests, symptoms and follows current Chronic Lyme suffers. It might help you decided if you are going down the right path. You can find this documentary on netflix and hulu
Posted 4/29/2012 8:40 PM (GMT 0)
Just wanted to share my experience...throughout my whole experience treating Lyme my test results have become more positive - I started out with just band 41 positive. For some people just getting the immune system to recognize the infection (thus test positive) is a big obstacle in itself.

One of the most frustrating parts of this disease, or I guess chronic diseases in general, is the uncertainty. I've found that keeping a symptom journal helps me to feel a little more in control of this whole thing - maybe if you can make connections between the antibiotics and how you feel, it might give you some clarity/perspective?

My best advice (though I'll admit sometimes I have a hard time following it!) is to trust and hope for the best. The way I see it, while you're on the abx, you may as well believe it's going to help, as there's a good chance it will. Also make sure you're detoxing! It really makes a big difference!
Posted 4/30/2012 2:43 AM (GMT 0)
Thank you Borderlyme. What you said made sense, and I appreciate you encouragement to hope for the best. I needed that.
Posted 4/30/2012 4:36 AM (GMT 0)
I was tested through several labs including Igenex and only had one band positive. The problem is I had a bulls eye rash 9 years earlier but back then nobody told me what it was. I was diagnosed from the rash, my symptoms and low cd-57. I hope someday there will be a test that is accurate. If I had known what this was back then and gotten treatment I might not have lost all those years living in this bed. My hope is that someday we get better testing and a cure.
Posted 4/30/2012 3:31 PM (GMT 0)
It is a difficult disease to treat because it is almost like an invisible illness...nothing is wrong with you...it's all in your head. I personally was hoping for some concrete evidence that I could finally say, Ah Ha! See I wasn't making this up for fun...Fortunately my doctor has finally decided that it is not just my glorious anxiety...he is the one pushing for me to be treated for this.
So, I am on two weeks of Zithromax. I am having my honeymoon period with it right now. My mind is clear and my mood is mellow...see how long that lasts.
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