posted
Another newbie question.... W When tested for Lyme, I was on day 4 of zithromax for a sore throat, swollen glands, stiff neck, bad body pain..etc. that came on suddenly. I've had Lyme symptoms ever since. The only positive band was #66. They say that band is non specific and the test is neg. Does any have any imput about this? I'm still sick over a year later and I'm getting so much weakness and pain, I can barely get around. I'm desperate for answers. Tests for all other disorders are neg. Thank you in advance. Peggy
Posts: 2 | From Northeast PA | Registered: Dec 2004
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We need Treepatrol or others with the newbie files..
There's lots of info there that will help you get the answers you need to figure this out..
Meanwhile, I can tell you that the world remouned Lyme and tick-borne disease pediatric specialist finds Band 66 is significant..
I know there must be info here on it, and you must also know there is allot more than blood testing that goes into an accurate diagnosis of Lyme and other tick-borne co-infections.
Testing is only one piece of the puzzle, as the types of tests we have available at this time are woefully inacurate..
There's good info on that to explain why as well.
Here's a start.. www.ilads.org Their Basic Information page I believe has good info..then to move on there to Doctor B.'s Guidelines for Diagnosis and Treatment..
This is the International Lyme and Associated Disease Society.. a medical society comprised of all the top LD Docs..
NEVER confuse them with the IDSA (Infectious Disease Soctiety) this group do not study nor have any experience treating chronic Lyme to efficacy, even say it doesn't exist! So..when it comes to tick-bourne infectious diseases..this group is comprised of what we like to call "ducks"..as opposed to Docs..
In any event, welcome, and hope you find information that will help you, and perhaps direction to a very good LLMD. (Lyme Literate Medical Doctor)..if it seems you need one..
Mo
[This message has been edited by Mo (edited 19 December 2004).]
Posts: 8337 | From the other shore | Registered: Jul 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
HI:
Did you have band 41 kDa on either the Igm or IgG?
Here is an older paper, but I think 66kDa has been found to be specific for borrelia.
Barb
_____________________________________ J Bacteriol. 1998 Apr;180(7):1618-23. Related Articles, Links
A surface-exposed region of a novel outer membrane protein (P66) of Borrelia spp. is variable in size and sequence.
Bunikis J, Luke CJ, Bunikiene E, Bergstrom S, Barbour AG.
Department of Microbiology, University of California Irvine, 92697-4025, USA.
A model of the 66-kDa outer membrane protein (P66) of Lyme disease Borrelia spp. predicts a surface-exposed loop near the C terminus. This region contains an antigen commonly recognized by sera from Lyme disease patients. In the present study, this region of P66 and homologous proteins of other Borrelia spp. were further investigated by using monoclonal antibodies, epitope mapping of P66 of Borrelia burgdorferi, and DNA sequencing. A monoclonal antibody specific for B. burgdorferi bound to the portion of P66 that was accessible to proteolysis in situ. The linear epitope for the antibody was mapped within a variable segment of the surface-exposed region. To further study this protein, the complete gene of Borrelia hermsii for a protein homologous to P66 was cloned. The deduced protein was 589 amino acids in length and 58% identical to P66 of B. burgdorferi. The B. hermsii P66 protein was predicted to have a surface-exposed region in the same location as that of B. burgdorferi's P66 protein. With primers designed on the basis of conserved sequences and PCR, we identified and cloned the same regions of P66 proteins of Borrelia turicatae, Borrelia parkeri, Borrelia coriaceae, and Borrelia anserina. The deduced protein sequences from all species demonstrated two conserved hydrophobic regions flanking a surface-exposed loop. The loop sequences were highly variable between different Borrelia spp. in both sequence and size, varying between 35 and 45 amino acids. Although the actual function of P66 of Borrelia spp. is unknown, the results suggest that its surface-exposed region is subject to selective pressure.
posted
It sure sounds like lyme eyc.- very similiar to what I had. I had the "smoking gun"- the ticks and the rash, and they gave me a ...'test'... (as opposed to a Test) at a local clinic here, told me it was 'negative', and prescribed 6 weeks of doxycycline. But then a couple months after that I got really sick. I should have had a longer, stronger, course of antibiotics at first! Thgen I would have avoided several years of misery. The tests are not all that accurate. False negatives are common.
You need to get on antibiotics right away. Also, where you are, "co-infections" are common- other diseases carried by the same ticks. The three main ones in the east are babesia microti, ehrlichia, and Bartonella. Ehrlichia can also be treated with doxycycline, but keep in mind if you'r trying to treat lyme too, doxy alone is probably not enough. Babesia is not susceptible to the same antibiotics as lyme, and is treated with one of the following combis: 1)atovaquone and azithromycin, 2)quinine and clindamycin 3) artimesiaa anua, a chinese herb. and its extract, artimisinin.
I had a hard time getting over lyme until I started serious treatment for the babesia. Good luck- hope you nail the lyme etc. before it gets entrenched! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Interesting,
I took zithromax, came out with lyme symptoms and havent been the same since.
I had band 66 and that didnt stop my LLMD from helping me out to near recovered now.
if you email me, I can give you names of doctors in PA that treat Lyme.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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your dr can order these tests. if he doesn't ask him why? doesn't he want to get you well? if he doesn't oblige get another dr, preferably someone who is familiar with lyme, what we call an LLMD (lyme literate medical doctor).
band 66 is not indicative of anything except a protein value.
it doesn't corrrelate to anything, yet, as scientists are still trying to perfect the test.
lyme disease should be made on a clincal diagnosis, so the Center for Disease Control states in their literature. a western blot or ELISA test is only to be used to help the doctor determine a diagnosis.
I always like to remind folks to not take any steroids which will further depress the immune system. Some non-LLMDs prescribe them for inflammation. Just say no.
Also, if you develop any rashes, get a disposable camera & take pictures of them beside a coin for size comparison. Save them, you may need them.
Another great place to start reading about LD is "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses."
This is a comprehensive handbook for LD. Most folks like to print this out for easy reference. It has a symptom list and recommended medications.
Another favorite of mine is called Lyme Disease and Associated Diseases: The Basics." It's a 28-page, plain-language introduction to tick-borne diseases.
It contains a 7-page, comprehensive symptom list which I know you will find fascinating.
Click on:
http://www.lymepa.org to download entire printout. When you reach the site, click on the Booklet icon located below the Lyme Teens icon.
The more you know about Lyme, the more you can take charge of your health.
Naturally, this is a lot material to take in at once. Just print them & read at your leisure.
Most of all, we just want you to find the root cause of your symptoms. So please keep asking questions as we understand firsthand how overwhelming this quest can be.
If we could only convince physicians around the globe that:
The Diagnosis of Lyme Disease is based on symptoms, then maybe we wouldn't need Lymenet.
Best Wishes, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
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