Dr. #6 say no to lyme
Diane Pitcock
Sorry for this lengthy message but I really need some help.
I'm having trouble getting lyme diagnosis, although I am pretty sure I
have late stage lyme. Yesterday I saw Dr. #6 (the second
rheumatologist). I thought I was prepared to present my case for lyme
to him. I had been told he was a good listener. I had done my homework.
I had printed out Dr. Burrascano's New Lyme article along with some
other relevant articles to leave for Dr. #6 to read and consider.
Actually, I didn't even know much about lyme until Dr. #4 (a
neurologist) suspected it and had me tested. I went home that day to get
information about lyme on the net. Plenty there! When I read the
symptoms list, I thought, my gosh this is me. I had 25 of 38 symptoms.
But the Western Blot came back with only 2 reactive bands (41 & 66) and
the PCR was negative. So Dr. #4, #5, and #6 simply don't believe it's
lyme.
Yesterday was the last straw. Dr. #6 said Dr. B's published info was
not correct....he rolled his eyes when I mentioned the work of Dr. Nick
Harris at IGENEX and the LUAT method of testing for lyme. AND, he said
that the Lyme Disease Foundation is not a reputable medical organization
and much of their info is eroneous. He said Dr. Steele (a fellow
rheumatologist) is the leading authority on lyme. He scoffed at an
article I showed him from Journal of Spirochetal and Tick Borne Diseases
regarding the LUAT. Said that journal wasn't a reputable medical
publication. (So, I didn't DARE tell him that my 3 vials of urine were
in my freezer ready to ship to IGENEX. Thankfully, I had a nurse
practioner that had reluctantly given me 1 week of Doxycycline so that I
could perform the test on my own after talking with Dr. Harris myself.)
Dr. #6 suggested that my profound fatigue, restless sleep, mood swings,
tremor, night sweats, depression, headaches, flushing, short term memory
losses, and difficulty concentrating, might be due to early menopause
(I'm only 41) He said my muscle/joint stiffness sounded like
fibromyalgia even though his exam didn't find any of the 18
trigger/tender points. He said muscle twitches and neck creaks are NOT
symptoms of lyme and my symptoms list was wrong. He could offer no
explanation as to why I get muscle twitches, tingling sensations, etc
every 2-3 minutes at various locations on my body.
But he did give me flexirl (muscle relaxant) for the twitches. Also
Ultram for the pain and stiffness in my legs. Then he said he would
confer with Dr's. # 1-5.
So far those previous doctor's and their tests have produced the
following on me:
Dr. #1 -orthopaedic doc - good set of knee x-rays, lots of cartlidge
showing...I had to twist his arm to say maybe I might have mild
arthritis, if any. Gives me naprosyn Rx and sends me to doc #2 after I
asked him if my leg muscle/joint pain, stiffness and difficulty walking
could be fibromyalgia.
Dr. #2 -rheumatologist - didn't think fibromyalgia after giving me a
very brief exam. Ordered complete blood workup for all autoimmune
screening, rheumatology, lupus, lyme, syphilis. All came back normal
Dr. #3 -another orthopaedic doc - checking for back trouble - But my
MRIs on lumbar and thoracic spine came back normal...sends me to doc #4
Dr. #4 -a neurologist - picked up the tremor I have during his
neurological screening exam on me. He suspected lyme after reviewing
all other negative MRI's and test results that I brought with me. He
interviewed me and found out we go camping alot...live in house in woods
in hot-bed county in MD, husband hunts deer in our back woods...dog
brings lots into the house on him, and I've been bitten by ticks several
times, but no rash. He ordered Western Blot and PCR while conferring
with infectious disease doctor who became Doc #5.
Dr. #5 - infectious disease doc - Reviewed the seronegative lyme tests
from neurologist. Gets book off his shelf to look up Western Blot
interpretation and proceeds to tell me they require 4 or 5 bands for a
positive. I only had 2-- one of which was significant, but he didn't
think I had lyme. Examined me and told me he thinks I have degenerative
arthritis. (despite all previous X-rays, MRI's and rheumatology work-up
showing normal.) Orders a whole body bone scan. Tells me to lose 10
pounds and I'd feel better. Discounted all my other symptoms as stress.
Tells me to see rheumotologist to go over bone scan report when it comes
back.
Dr. #6 - the rheumatologist and THE LAST STRAW! Insists that Western
Blot is a highly sensitive and accurate test. Thinks Dr. Steere walks on
water and whatever I've been reading on the internet is bunk. My bone
scan results were pretty normal. He said scan is extremely sensitive yet
only showed very mild arthritis activity in 1 finger joint, 1 rib, and
some mild knee activity. BUT, he conceded, nothing that would keep me
from carrying my dirty laundry basket downstairs, or walking without
pain and stiffness. Refused to at least put me on antibiotics while
they continue to look for the source of my trouble.
I can't convince these guys to at least keep the lyme door open. I'm a
41 year old mother of a two and six year-old. Five months ago I could
easily ride 5 miles on the bike trail, shovel a whole truck load of
mulch into the garden by myself, walk 1 1/2 miles several times a week,
and swim laps at our indoor pool club weekly.
Now daily routine activities are profoundly tiresome and painful.
When I had a c-section 2 years ago, I was out with my husband and new
baby pushing the shopping cart around Home Depot just 5 days after the
surgery. Does that sound like a person who is a wimp when it comes to
pain or discomfort? Yet, I know these doctors think I'm just a
hypochondriac or bored housewife looking for attention.
I need to locate some hard core, legitimate studies documented in
credible medical journal articles to show these guys that it is indeed
possible to be seronegative, yet still have lyme. I got my graduate
degree from Johns Hopkins University. As alumni, I still have access to
its library. They will have all the back issues of medical journals
archived for me to locate. But researching would be time consuming.
I'm already too overwhelmed by 5 months of negative tests and shuffling
from one doctor to another while my symptoms have progressively
worsened.
Has anyone read articles about seronegative lyme patients that they can
cite to me? I mean medical journal type stuff, published by respected
research scientists and doctors of lyme research. If I had the article
titles, periodical name in which they appeared, month and date etc., it
would sure cut my research time in looking for the proof I need to show
these skeptical doctors.
My next step is to head to New Jersey, New York, or Conneticut for a
lyme literate doctor since MD doesn't seem to have any for sure. Any
suggestions for one? I just Fed-x'd my LUAT to Igenex, but if it comes
back negative, I guess I'll drop the lyme thing and figure I'm just a
nut case.
Any info or suggestions would be appreciated. Thanks in advance. Again
sorry for the length of this.
Diane
"It's Just Stress" Patty
physician usually hands off the baton ( you) to the next physician who he knows
from past experience will agree with his same philosophy. Wouldn't you like to
know what they really say to each other and write on your consultation sheet that
gets there before you do? Thus you get a "second" opinion but really the same
opinion. That is why when you finish the relay and see the tape stretched across
the line and collapse exhausted on the ground- you are back at the same place
again. You look up into the sun and see the same 6 coaches smiling down at you.
The fact is that you very likely are not SERONEGATIVE. You are reactive. No
one is seronegative until they have had complexed antibody-antigen testing. Have
you had both the IgG and IgM Western Blot? Just one is insufficient. Have you
had the tests done at two different labs?
Which bands turn up positive? Are these bands more positive than the negative
controls-then these are actually reactive. Reading the bands is all subjective
you know. Look at the card sometime- what you call positive they call negative.
There is no scientific basis for stating that the intensity of the bands
correlates with actually having the disease since none of these journal articles
used immune complex testing- just free antibodies. You could be loaded with
31,34,39,93,23 - specific bands- but all your antibody tied to antigen. you
could be the sickest lymie on the block but the band count wouldn't show it. You
could be loaded with 31 and 34 but this lab doesn't test for these bands. Lyme
disease is a clinical diagnosis. The lab tests are for information only.
Information means to be interpreted at the bedside with you. These doctors may
not be able to interpret it since they went to a book and got the magic band
count number. Go to the Lyme Alliance site and get the 10 reasons the ELISA test
and Western Blot tests stink. Put it under their noses. Ask them to smell and
then pursuethe fact that there are many tests to do further such as LUAT, biopsy,
response to antibiotics, Lymphocyte proliferative cell test at Stony Brook, etc
etc.
It won't be wasting the time for t he next victim- it might waste yours.
Here are some articles- Western Blotting in Serodiagnosis-Dressler J of Inf
Disease 1993:392
This is the one for the 5 band criteria- needless to say it missed 1/3 of
the victims of chronic lyme disease in the authors own words and study!!!! do we
need to give them more.
Engstrom in the other study used just two bands!!! at theDearborn Meeting. And
in her conclusion she stated that if negative, the blotting could be repeated
after antibiotics since many patients changed banding in response to
antibiotics!!!!Dr. Berger is open minded and experienced- try hisLab tests for
Lyme Disease Dermatol Clin 1994 Jan 12(1) 19-24. Some like the NEJM- try
Seronegative Lyme Disease byDattwyler Dec. 1, 1988;319(22) 1441-1446. or
Infection- Hofmann Lyme Borreliosis- problems of serological diagnosis 1996
Nov-Dec 24(6) 470-2. Follow IgM here. How about Advantage of recombinant
borrelial proteins for serodiagnosis of neuroborreliosis Kaiser JMed Microbio
V48(1999)pg 5-10. Recombinant is much more sensitive. Did your lab use
recombinant or sonicated borrelia? Some feel concerned reading Bakken's
Interlaboratory Comparison of Test Results etc Jour. of Clinical Micro Mar
1997p537-543. Here many labsdidn't agree on results and sensitivity was about
75%. Of course they are all aware of Schutzers study back in Lancet 1991- ignored
by most- precipitating antigen and antibody complexes and then doing the antibody
testing markedly improved testing- in fact it picked up all the patients negative
by the free antibody testing you got. There are many many more studies. After
a while it gets pointless listing them. Good luck.
BratDet
.get copies of every darn test from all of the drs...so you yourself can see
the results...
wait for the luat results...if they come back positive get yo' butt to a
LLMD...
make sure you point out how active u were....sometimes new dr's forget how
important prior health history factors into the whole picture....
there are also other diseases to be ruled out...but why don't you tell us what
state you are in...and ppl can e-mail dr. referrals to you...Bernadette
Donna2424
It took 5 blood tests for my positive to finally show up. I know what you
are going through. Most docs are just oblivious to this whole thing. What
idiots. Just a suggestion......key word suggestion.....have you tried
colloidal silver in the meantime until you can find a doc with common sense.
Hope you find help soon.
Art Doherty
http://www.geocities.com/HotSprings/Spa/6772/false-neg-pos-index.html
This web site contains the following:
1. Introduction to Lyme disease and false negative/false positive blood
test results.
2. Summary and highlights of the selected abstracts on Lyme disease and
false negative/seronegative and false positive test results.
2a. Medical and scientific abstracts on Lyme disease and false
negative/seronegative test results.
2b. Medical and scientific abstracts on Lyme disease and false
negative/seronegative and false positive test results.
2c. Medical and scientific abstracts on Lyme disease and false positive
test results.
2d. Other medical and scientific citations (no abstract available on
internet) on Lyme disease and false negative/seronegative and/or
false positive test results.
3a. Doctors on Lyme disease and false negative/seronegative test
results.
3b. Doctors on Lyme disease and false negative/seronegative and false
positive test results.
3c. Doctors on Lyme disease and false positive test results.
4. Laboratories on Lyme disease and false negative/seronegative and
false positive test results.
5a. Other information on Lyme disease and false negative/seronegative
test results.
5b. Other information on Lyme disease and false negative/seronegative
and false positive test results.
5c. Other information on Lyme disease and false positive test results.
6a. Media articles about Lyme disease and false negative/seronegative
test results.
6b. Media articles about Lyme disease and false negative/seronegative
and false positive test results.
6c. Media articles about Lyme disease and false positive test results.
7. Lyme disease diagnostic testing resources.
8. Other Lyme disease resources.
also see:
Lyme Disease Resources
http://www.geocities.com/HotSprings/Spa/6772/resources.html
Lyme Disease in the United States and Canada
http://www.geocities.com/HotSprings/Spa/6772/lyme.html
If there are errors or something you'd like me to add,
please send me an email message.
Art Doherty
Lompoc, California
mailto:doh...@utech.net
Sinaj101
>have late stage lyme.
Diane,
That is exactly why a lot of us didn't bother trying to educate some of
these ninnies. We found an already lyme literate doctor in order to get help
quicker. Don't be disillusioned if your LUAT comes back negative. Mine did..
My local uneducated doctors did 2 lyme tests on me and they both came back
negative. The only test I had that came back reactive was the Western Blot IgM
The only bands I showed were 83, 58, 41 It says for it to be Reactive 2 of the
following bands must be present -23, 39, 41, 83 As you see 83 and 41 were
the only bands I had. On the IgG there was no bands at all. I have read that
the IgM is the one for a currrent infection but there is no way that can be as
far as I know. Because I was bit in the summer of 1990 and had the classic
bullseye rash and was given only 2 weeks of Doxycycline and then about 3 or 4
years later the Lyme symptoms started appearing one at a time. This test was
done in Sept of 97. The western blot was done at North Amercan Laboratory
Group. I think that is in Connecticut but I am not positive. After taking
Doxycycline for at least 6 months and seeing my symptoms gradually disappear
was enough to convince me. Thank goodness my lyme specialist knew how
unpredictable all these tests were. He told me even if the tests all came back
negative judging from my bullseye rash, 2 weeks of Doxy in the beginning, Bells
Palsy( which at the time was treated with a corticosteriod which he frowned
on), fatigue, aching, headaches, numbness, confusion, and stiffness that he
still thought I had Lyme. Now 20 months later I am living a fairly normal life
other than still being dependent on medication to keep it under control. I
have hopes of someday being off abx but for now I am looking into heat therapy
and other possibilities because even though I am pretty much my old self I
would really like to make sure I don't have a relapse.
Good Luck and don't give up,
Janis
Sparrow
things
I "used" to do, and said almost the same thing you did. "now does that
sound like a wimpy person. . .. "
I am going through the same thing you are, in regards to my 6 year old
daughter.
I have now decided that if a Dr. who does not believe she has Lyme (and
ALL her tests 6 of them) have come back positive, but they say she is
cured since she's had 3 weeks of abx, refers me to someone else I am
NOT going to that Dr.
I agree with whoever said, that it's all a joke to them, they refer to Dr's
who
feel the same way they do, I suppose to cover their butts. I am collecting
info now, so that I can file a LAWSUIT when I am done with all this. . . .
.
E-mail me, if you want. . . .
SParrow
Fyikat
>>sorry for the length of this.
>>
>>Diane
>
Diane,
Not making light of your situation here but I think Doc # 8 will be a winner
because you sound like the "average # of docs to get a dx." LOL. Take care
and good luck. Don't give up - you are not a nut case. I think that people
who actually have a psyciatric illness NEVER consider that they have a
psyciatric illness.
Kathleen
ANGEL23374
I went through a smilar problem, until a lyme specialist whom I heard about
gave me a LUAT test. Even though my Western Blot, and ELISA were neg, my LUAT
came back SUPER SUPER high. That was one year ago, and she has been treating
me ever since. I think you will get better care if you seek the help of a Lyme
specialist. good luck to YOU!!!
DenimN
>31,34,39,93,23 - specific bands- but all your antibody tied to antigen.
Don't forget the 23 - 25 and the 83, 58, 66...
User763213
hormones im 47 and i have no desire to initiate treatment to correct this faux
menopause or ammenohrea but when i took a combiation of estrogen and
progesterone lo and behold i was cured of menopause for six months i was
waiting for the bleeding to stop. or ameliorate but it was a full blown period
worse than when i was a teen
User763213
marriage i am now divorced and my whole life is a struggle ill pray for you
please pray for me
RMAgricola
Go to a Lyme literate doctor NOW. Stop fooling around with your health at the
hands of all those doctor. If you post what area you live in I am sure someone
can help you locate one.
While it is nice in theory to attempt to educate a doctor who will care for
you I think you have to take care of yourself now before wasting anymore time.
Martha A.
User763213
verifying a written explanation in lay person's terms to be furtther explained
by the doctor if necessary anda simple statement regarding doctor protocol and
follow-up. Then and only then should payment be mailed to the doctor