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Posted 12/20/2011 2:30 AM (GMT 0)
Just wanted an opinion from those of you that have been dealing with this a long time. The LLMD I went to called and said my test results were negative. I had them fax a copy of the report today and the only band present was 41 and after it  it says IND. In the report itself it says that presence of only one double starred band or indeterminate double starred band in a negative report may indicate clinical significance and they recommend testing with another method or retest in 4-6 weeks. The LLMD didn't say anything about this or have any furthur recommendations. It was a western blot sent to IGeneX. According to my symptoms I was pretty sure I have Lyme. I have started a nutritional supplement called Reliv and am also taking grapefruit seed extract and Cat's Claw. My symptoms have improved somewhat since taking these. What do you think of these results? 

Post Edited (Twills) : 12/19/2011 9:17:57 PM (GMT-7)

Posted 12/20/2011 3:15 AM (GMT 0)
How long since your symptoms started? Did you have the EM rash?
Did you start taking Cat's Claw before the tests?
Posted 12/20/2011 4:15 AM (GMT 0)
Some of my symptoms I've had for at least ten years, with worsening ones in the last 2-3. The main ones are numbness on left side, burning mouth syndrome, joint and muscle pain, stiff neck and lots of neck and shoulder pain, general backache, heart palpitations, popping, cracking joints, fatigue that comes and goes, brain fog, tingling in hands and feet, aching and burning in feet especially in the morning, sore spine, headaches, air hunger. These are the main ones. I started the cat's claw about three weeks ago.

I didn't have a rash, but was bit at least twice by ticks, ten+ years ago, and again three years ago.

I was not taking the cat's claw before I got tested.

Posted 12/20/2011 4:51 AM (GMT 0)
Twills, I have been told a million times that just getting band 41 to show up positive "means nothing." I bounced from doctor to doctor, always suggesting Lyme, but I was ignored over and over. It's surprising to me that your LLMD would not diagnose you clinically given your symptoms. It certainly sounds like Lyme, although I'm obviously not a doctor. I'd suggest either confronting this doctor, or perhaps finding a new one.

Cat's claw is supposedly effective against biofilms (which protect the Lyme bacteria from being killed in the body). It's also good for a number of other things, including inflammation. So there are a few reasons it could be making you feel better.

I've heard that the further along you go into treatment, the more likely you are to get a positive test. So maybe - hopefully - the supplements you're taking will stir something up and get the bacteria back swimming in the blood so they can be detected. Are you consulting with any other doctors, or waiting the 4-6 weeks?
Posted 12/20/2011 12:44 PM (GMT 0)
Just recently I have talked to a lady who works at my health food store who has Lyme who saw a different doctor than I did, who pretty much treated all natural and she is much better. I'm thinking of seeing this doctor and taking a copy of my report to her. I also saw this morning that the second page of my report is different from the first. (I thought they were the same). On the second page band 31 and 39 say IND after them and band 41 has ++ signs.
Posted 12/20/2011 1:32 PM (GMT 0)
Yes, Twills, you need to keep looking into this. It turns out not all LLMD's are created equal! An LLMD that only goes by the test results is no LLMD in my mind!!!

Do please keep looking for someone who can help you -- the health food store lady's doctor sounds like a good start.

Good luck, keep us posted.
Posted 12/20/2011 11:11 PM (GMT 0)
Amen, Achievinggrace!! I sooo agree!

Don't give up Twills!! You have the symptoms, don't give up until someone can either get you into a treatment routine that helps or can show you positively that what you have is something else!

We have to be our own health advocate. Think of it this way, what if your child were suffering from your exact symptoms? You would fight tooth and nail to find an explanation, but you wouldn't stop there either! As a concerned parent, I'm sure you would fight for a treatment that helped as well! That's what we have to do for ourselves!

Keep up the good work!
And yes, please do keep us posted!
Posted 12/23/2011 12:46 AM (GMT 0)
Twills

Have your doctor have IGeneX run the 31 kDa epitope test on your 31 IND. If IgM then test #488. If IgG then test #489. $100.

If this test is positive then 31 is in fact lyme.

39 is IND 86% of the time with almost all of the remaining 14% +. Excluding neagtives.
Posted 12/23/2011 4:43 AM (GMT 0)
Thanks, ChuckG. I'm kind-of letting it ride right now, with the holidays and all, but would like to make a decision after the holidays what I'm going to do.
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