Lyme People

For those who don't know, following a dpd post a few weeks back, I have become absolutely convinced that I have been battling Lyme disease for a couple decades, having no idea that that was the case. Anyway, after telling my primary care doc., he ran the Western Blot test which he said would conclusively rule out Lyme as a diagnosis if negative (though not conclusively rule it in if positive). The test result came back as showing no sign of Lyme disease which did surprise me.

I've come to 3 possible conclusions which if anyone has a comment on I would appreciate it. First conclusion, I do indeed have Lyme and that my immune system is not showing any activity against Lyme because it's just been too long trying to go after it , and my immune system has sort of 'accepted' Lyme's existence having to coexist with it for so long. Second, I did have Lyme way back when, and I no longer have it, and what I'm fighting is really more dysbiosis which the Lyme may have set in motion many years ago. Last possible conclusion is that I simply don't have Lyme Disease and never did. I do fit the profile for Lyme, according to its sympoms, but that diagnosis is erroneous. ( Though maybe I do have a different tick-born infection that the Lyme specific test did not pick up.) My main question is - after getting an all-clear from the Western blot test for Lyme, just how confident should I feel that Lyme is not the main culprit with me. My intuitive judgement still leads me to believe I have been battling Lyme for many years and that somehow this test was a false-negative. Any thoughts?


Niles,

Did your dr. send the Western Blot to Igenex in Palo Alto, CA? If so, how many bands were positive, negative or indeterminate. Were you declared negative because you didn't meet the CDC requirements of 5 out of 10 bands positive? There is another standard that if 2 out of 10 bands are positive, then you are positive.

Sometimes the spirochete changes forms and goes into a cyst form. Then it is not detectable.

I've heard once you have it, you will always have anti-bodies to it. In other words, once you're cured, there is no test to prove you are cured.

Did you get a CD-57 run? This is an important test. It needs to be the Stricker CD-57


Pace, thanks for commenting. I assume that the Igenex lab was not used. I have no reason to believe it was. Hopefully the lab they used was trustworthy (dpd had also mentioned how important using the right lab is, but sometimes you can't really control what labs your doctor uses). Also I know there is debate over how many bands to include in a verdict and I'm sure if a doctor doesn't even mention the contoversy, then he/she will go by the CDC guidlines. I think what I've learned is that I really need to find a Lyme literate doctor to really help this process along. Your average primary care doc. is unlikely to be an expert in Lyme. Unfortunately, I wanted my doc. to send me directly to an infectious disease specialist who almost certainly would know more about Lyme than a primary doc., but unfortunately, if you don't 'pass' the Western Blot test, as far as they're concerned, the buck stops there and you don't have Lyme.

I should also take time to read up on Lyme in books and online. I haven't done that yet (I've been too fatigued and brainfoggy).


Niles,

I would suggest getting a copy of your lab report. Then you will know for sure which lab was used and how many bands were positive.

Many labs do not run tests on all the bands. WHich is very curious to me when I learned that that two of the most important bands that are not checked are actually used in the study to make a Lyme vaccine. How bizarre is that?

Many people got negative results because of this. However, when their blood was re-tested at Igenex, they were positive.

Here are three good books on Lyme:

1. Everything you need to know about Lyme disease - and other tick borne infections, Karen Vanderhoof-Forschner.

2. Healing Lyme - Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections - Stephen Harrod Buhner

3. Lyme Disease and Modern Chinese Medicine - Dr. Qingcai Zhang and Yale Zhang.

It's probably a good thing that you didn't go to an Infectious Disease specialist. From what I know, there are only 2-3 in the country who treat Lyme according to the ILADS & Dr. Bruscanno's guidelines. Most of the others fall into the other camp--IDSA which does not recognize Chronic Lyme and believes Lyme can be treated with 14-30 days of antibiotics. This makes no sense to me when I think of all the antibiotics thrown at bacteria for lesser problems like ear infections, acne, etc. Also, the Lyme disease is caused by a spirochete which is the same corkscrew shaped kind of bacteria which causes syphilis. No doctor today would withhold antibiotics when it comes to treating that horrible disease. So, why don't they get it about Lyme? It's just as frustrating as finding a good dr. to treat you with Candida!

Find a good LLMD. I'm finding most of the treatment will probably be out of your own pocket, so be prepared.

Niles.

You can still very much lyme. The tests are not reliale and you can do a numer of things if you still want to go that route:

1. Test for coinfections, especially aesia.
2. Use Igenix and try various of their tests.
3. Start treatment and then test (you may not e producing antiodies or all of them are "wrapped" y other protiens...
4. Find a LLMD (Lyme Literate MD) who can help with the diagnosis.If you have had health prolems for years, the lyme I dout just vanishes. I just think the tests are lousy...

Many of us are doing vitamin c and salt treatment and this produced an immediate herx for me EVEN at 2 grams. You can try doing the protocol (http://health.groups.yahoo.com/group/lymestrategies/) and if indeed you herx, this is nearly a sure sign...

I am sure dpd will have good advice!

Good luck,


Many Lyme tests are very unreliable.
I'd choose either PCR or vitamin D
testing. Most Lymies will have
an elevated vitamin 1,25D to 25D ratio
since the infection busily converts
vitamin 25D to 1,25D. Very few other
things can cause an elevated ratio, so
such a finding is a strong indictor
of infection.

Tons of info about this is at
marshallprotocol.com


Thanks b, your ideas for further investigations are good ones. I first need to find a Lyme doctor who would be willing to go ahead with further testing. I hope I find one soon. You are probably right that Lyme generally doesn't just disappear or die out - just wishful thinking on my part. A while back, I had skimmed the salt-c protocol website, but this time I'll review it more carefully. Thanks, .