Lyme disease despite testing negative?

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bembuks
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 10/11/2009 10:10 AM (GMT -6)   
Hello everyone, thanks for all the info that has been shared on this board. it really helps to sort some things out.
 
Just wondering - if blood tests for Lyme disease are Negative, but doctor strongly suspects Lyme disease, yet only treats me with herbal supplements.. have I got any right to demand some kind of proper treatment from my general practitioner MD? Is there such a thing as seronegative Lyme? In my country, if your tests are negative, then - you have no hope, even if you remember actually having an errithema migrans.
 
has anyone received serious antibiotic treatment despite negative tests?
 
thanks
this is so confusing and yet so URGENT as I was 8 months pregnant when (IF) I got LD, baby girl had problems but is now generally ok
Probably tick bite August 2007, while 8 months pregnant
Severe Knee arthritis started February 2008, Dx - Reactive Arthritis, which subsequently took over all large joints
Elisa IgM and IgG both Negative, Western Blot IgM - Negative
2nd diagnoses April 2009 - probably seronegative Lyme disease
treatments so far unsuccessul. (2 week ab twice), Currently no meds, but naturopathic supplements
 
I still hope :)


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 10/11/2009 10:17 AM (GMT -6)   
Demanding from your GP usually gets you zip, if they are not LL.

You need to remember first and foremost, Lyme is a CLINICAL diag.

Is there anyway you can get to a LLMD?

Many of us on here have had and are still in treatment with a negative test result.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/11/2009 10:23 AM (GMT -6)   
Hi bembuks,

Welcome to the forum! I'm so glad you could benefit from the information we have here.

What kind of doctor are you seeing? Do you know what herbal products you are being treated with? Some members here have and are currently treating with herbal products. Some have gotten better and have been better for years.

Have you talked to your doctor about using antibiotics with your herbal treatment? Some doctors combine herbal products with antibiotics.

Do you have a copy of your test results that were negative? You can post them here if you'd like. Just because the test came back negative, does not necessarily mean it is negative. Those tests are sometimes inaccurate. Your doctor is probably looking at which bands on the tests are positive, which is a good thing. Most doctors don't do that. You are rather lucky that your doctor is considering your positive bands.

Yes, there are many here with negative tests that are still being treated. The doctors most of us go to are Lyme Literate Medical Doctors, so they look at the bands that are positive and compare them to our symptoms.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


bembuks
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 10/11/2009 10:31 AM (GMT -6)   
yes, I've also read that Lyme is a CLINICAL diagnoses, yet ir does not stop doctors telling me to just relax and enjoy life..
From ILADS I have found a clinic in Germany (I am in Europe), they will do the tests. They have a LLMD at that clinic, too. But it is a whole different country, and where I live I know of no LLMD.

My MD told me I don't have Lyme because it did not stop after 2 weeks of a/b. And besides, LD does not cause severe joint pain... this in a country where 25% of ticks are borrelia infected. Our infectious disease guidelines rely solely on blood tests for dg. hopefully, that german lab can sort it out.

I keep fighting because .. I love to dance so much that I can't afford staying in bed :))))
Probably tick bite August 2007, while 8 months pregnant
Severe Knee arthritis started February 2008, Dx - Reactive Arthritis, which subsequently took over all large joints
Elisa IgM and IgG both Negative, Western Blot IgM - Negative
2nd diagnoses April 2009 - probably seronegative Lyme disease
treatments so far unsuccessul. (2 week ab twice), Currently no meds, but naturopathic supplements
 
I still hope :)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/11/2009 10:37 AM (GMT -6)   
bembuks,

You did great in finding a doctor through ILADS. If you can get to that LLMD, you will be treated for Lyme the right way. Not just two weeks of antibiotics!!! It takes much longer than two weeks to eradicate the bacteria. That makes me so mad when doctors do that.

You can also tell your MD that he is WRONG about the severe joint pain! Lyme Disease can cause many, many horrible symptoms and severe joint pain is just one of them.

Get to an LLMD as fast as you can! You will be in better hands.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


bembuks
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 10/11/2009 10:46 AM (GMT -6)   
Thank CajunGirl

I guess I will have to do that. Just need to get $ to get the treatment there and get someone care for my 3 kids meanwhile!
But it may take a year or so. and it is a bit terrible wait.

thanks again.
Probably tick bite August 2007, while 8 months pregnant
Severe Knee arthritis started February 2008, Dx - Reactive Arthritis, which subsequently took over all large joints
Elisa IgM and IgG both Negative, Western Blot IgM - Negative
2nd diagnoses April 2009 - probably seronegative Lyme disease
treatments so far unsuccessul. (2 week ab twice), Currently no meds, but naturopathic supplements
 
I still hope :)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/11/2009 10:51 AM (GMT -6)   
What herbal products does your doctor want you to start? You may just benefit from taking it until you see an LLMD.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


bembuks
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 10/13/2009 4:20 AM (GMT -6)   

 

CajunGirl, yes I am taking the herbal supplements, none specific for Lyme (EsterC, Zinc, Turmeric, probiotics plus systemic enzimes), also I have a pattern of more severe symptoms and fever every 4-5 weeks, on those weeks I have taken cat's claw and beta glucan. felt awful with both, but couldn' t tell - from capsules or drom disease :)))

 

Now, I was referred by my MD to a rheumatologist Nr. 3. Got appointment next week at my country' s supposedly best university clinic. will see.

on a funny note, MD said: Lyme disease is more an autoimmune response, not an actual infection.


Probably tick bite August 2007, while 8 months pregnant, February 2008, Dx - Reactive Arthritis,which never ended... Elisa IgM and IgG both Negative, Western Blot IgM - Negative
2nd dx April 2009 - probably seronegative Lyme disease, treatments so far 2 week abx twice, Currently no meds, but naturopathic supplements
 
 

Post Edited (bembuks) : 10/13/2009 4:30:21 AM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 10/13/2009 4:48 AM (GMT -6)   
Hi Bembuks,
Wow!! What an ordeal! I'm really sorry to hear about your troubles.
I tested negative for a full year AFTER starting abx treatment, although I do test pos. for several TBI's now.

There is an on-line support group over in Europe that might be better able to help in finding a MD who at least knows something about Lyme Disease. It's Lymenet Europe (.org)

After having said that, I do have to say, of course, we all know THIS is the best on-line support group!!!!
~ giggle ~
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 10/14/2009 1:01 PM (GMT -6)   
Bembuks,
It's hard to believe, but your doctor is even worse that the first doctor I saw.  It sounds like everything they believe about LD is wrong.  You might want to start taking Cat's Claw every day it helps build up your immune system.  Hope you find a LLMD soon!  Let us know what the doctors in Germany come up with, I've read that they don't believe in the IDSA's guidelines so that is encouraging.  Take Care, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009

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