I was diagnosed and treated for lyme disease in 2003. At that time i had no symptoms but a rash but tested positive for disseminated Lyme.
About 3 months ago i suddenly started getting migratory joint pain, more recently stiff necks and headaches.
My Dr. tested me for lyme, lupus, rheumatoid arthritis with all negative results.
Is it possible to still have Lyme with negative results?
Kristen,
I am so glad to hear from you again. It makes me feel a little bit
better knowing that there are people out there going through the same thing.
Not that I wish this on anybody, not even my worse enemy. I hate it for you
too. I was beginning to wonder if my lyme doctor was making this disease up.
The problem is with my doctor is he has been in trouble with the medical
board over this whole lyme disease thing. The NC Board of Medicine had
complaints about him in the past year and he has been going back and fourth to court
to fight for his rights. He strongly believes in backing his patients. The
problem is now that he has lost just about everything he owns just to keep
going to court and for attorney fees. He had to go through this same thing when
he had dealt with HIV/AIDS patients. That is what he specializes in. He
has saved so many lives and has made so many people feel better. Now I
understand that he may be leaving North Carolina and going to Washington to
practice. The board has forced him to leave. When he does leave, all of his
patients are screwed unless we can follow him to another state. Who in the heck can
afford that travel expense. I lost my job over this and had to go on LTD.
I get only a portion of my pay a month. I also get to keep my health
benefits which is a good thing. I am married and have two girls. (ages 5 & 10) I
have got to keep the medical for all my medical problems. Even though my
lyme doctor does not accept our health insurance now because of all this stuff
he is going through. BCBS of IL has denied his services. He is the only
lyme specialist in the area. I’ve been really scared on what’s going to happen
once he leaves. I am on so many medicines at this point that he has put me
on. Now I will have no way of filling them. I am on lots of
antidepressants/pain medicines/sleep aids/ and antibiotics. I feel like a walking drug
store. My friends do not understand. They think the medicines will kill me
before the lyme. I just wish one of them could understand what I go through on a
day to day basis. I feel your pain because I live it myself. Others just
don’t comprehend.
Anyway, what state do you live in? How long have you had lyme? Is
your doctor well known? If you don’t mind, can you tell me what made you go to
the doctor. Did you get the bulls-eye rash? Do you recall getting bit by
the tick? What were your symptoms in the beginning and how do they compare
with them now. I found it very interesting to talk to people with this disease
and compare notes. So many people have such different symptoms. It makes
you wonder why that is. Well, lets keep in touch and share our experiences
with each other if you don’t mind. Thanks for being their to listen to me whine
because my husband and my best friend I’m sure get tired of hearing about
it. They truly don’t understand. I love them dearly but it gets frustrating.
Well, have a great night and I hope to hear from you soon.
Jennifer
************************************** See what’s free at http://www.aol.com.
Yes, It is possible! I would check in with a Lyme Literate doctor. He
may retest with the western blot test out of California, which has more
accurate results. I had Lyme but was testing Negative with the tests
from the doctors office. By seeing a Lyme Dr you can be sure that you
are getting the proper care. Don’t wait too long, I did and it has been
hell for me. Find a Doctor now.
Goodluck!
On Mon, 25 Jun 2007 8:35 am, jaldert wrote:
Thanks for your response, Kirsten. Do you know the name of this test from California?
My Dr. Sent my blood off to the igenex lab. It was 195.00 for the test.
Most insurances dont cover it but its well worth it to take it. It took
awhile to get it back. But the results showed that I had Lyme. Search
on the internet for it for more info. I was diagnosed in Nov and have
been getting treatment finally after 7 years. For close to 5 years the
joint pain and headaches and everything was so bad I was bedridden. I
am finally able to get around better. I don’t sleep near as much and my
overall health has improved. I was tested twice for Lyme and both times
it was negative. But the test sent to the igenex lab showed Lyme. It’s
more accurate.
Http://www.lymesite.com/reliable_testing.htm
Has info for you including the igenex info.
Take care,
Kirsten
On Mon, 25 Jun 2007 2:22 pm, jaldert wrote:
Thanks for your response. I feel so lost having this illness. I am always
tired and have aches and pains everyday. I feel like a hypercondreac. I
generally have more bad days than good. My life has changed so much since I was
finally diagnosed 3 years ago. I have been to ever doctor it seems and I
was told I had mono. That is when my regular doctor recommended me to go to an
infectionist disease doctor. I did the IV port thing for about six months.
Then I proceeded with oral antibiotics for several months after. I lost my
job over this whole ordeal. I sleep so much now that I do not know if I
could ever hold a regular job down again. I was missing too much work. I
processed payroll for a very large company. I was starting to loose my train of
thought on a daily basis. I was getting really stressed out everyday at work
and that seem to keep me feeling worse. My insurance finally canceled my
doctors office service because people were falsely acussing him of treating them
incorrectly. They were saying that the doctor diagnosed them with lyme and
they went for second opinions and were told they did not have lyme. At that
point, what are you to do? We as patients put our health / life in these
doctors care trusting that the diagnoses is correct, I realize that some times
it can be very hard to determine a persons illness. You would think by now
that there would be some sort of cure and prevention out there. I never even
heard of the illness until I came down with it. Now it seems I meet people
all the time that have it. And yes, my doctor did send my lab work to
California as well. They say that it can be very hard to diagnose lyme because the
infection usually does not hang out in your blood. They say that these
sperikeetes hide in your muscles more than in your blood. Not sure how this
happens. Anyway, keep me posted on your progress and thank you again for
responding to my letter. It’s nice talking to someone else that has the illness.
Wishing you Good Health,
Jennifer
************************************** See what’s free at http://www.aol.com.
Jparker,
I can so relate to what you’ve gone through. I know there are many of
us out there that are just as frustrated. I too can’t work, can’t think
straight most days, and sleep A LOT, and I get so tired of the pain.
Last month I had 7 days straight of no pain! 
I was so happy to have
those days and I got so much done! But since then it’s back to feeling
awful. I’ve been trying to learn all I can about the Spirochetes that
invade the body. I too read that they invade the muscles and tissues.
I have been on antibiotics since Nov.06 I also read that some doctors
will take patients off the treatment too soon and they still aren’t
quite well enough to function.
I was to the point that I was having seizures and trouble walking. They
thought I had MS thank God I dont. But then I found this Lyme Doctor
and was tested and now I’m on the road to recovery. I hope anyway!
It will be nice to feel normal again one of these days. Until then I
just take one day at a time. I
Try to be positive but you know, just as we all know that it is really
hard to be positive when the pain is constant, and the fatigue is
neverending.
I occasionally cuss that little tick that bit me!
and that makes me feel alittle better.
Feel free to write me anytime!
Kirsten
On Tue, 26 Jun 2007 11:09 pm, jparker wrote: