posted
I know you all are going to scream at me for not going to a llmd BUT because of financial obligations I have not done so. Because of many problems I am having including high white blood cell count, burning bones, sore muscles, stiffness, headaches (and the list goes on and on), I went to my family doctor to see if I could get anywhere with her. She's very nice, and wants to help, but doesn't know much. She did a bunch of blood tests that came out negative, except for two. One was my white blood cell count which was high, but not horrible (12,200). And my Western blot which showed "I had lyme disease a long time ago".
So, she sends me to an infectious disease doctor.
I waited SEVEN WEEKS for this appt, AND locked my keys in the car when I got there!!!
You're going to love this...
Turns out this guy's friends with Alan Steere! He starts telling me about this whole "underground group" on the internet and how they picket with signs outside of his practice with signs that read "murderer"!
He told me that my Western Blot is showing some antibodies because when I got bit one year ago and had a rash my body developed antibodies against lyme. He also said that since my family doctor treated it promptly with 20 days of antibiotics, I no longer have lyme. But the good news is that now I have lyme antibodies in my system that will help me not catch lyme disease in the future!!! Well I guess I don't have to worry about the 10-15 deer ticks that have bitten me since then.
Needless to say, I am pretty mad about this appt. I questioned him about the reliability of the Western Blot and gave him the information about the CENTRAL FLORIDA RESEARCH, INC. He told me that there are many bogus labs out there offering crazy tests. He asked if the test has been approved by the FDA. I told him I didn't know, and he handed the papers that I printed out back to me.
He told me that I'm fine, I do not have lyme disease, and if my joints hurt I should see a rhumatoid (sp) doctor. There really was no reason that my family doctor should have sent me to him.
Oh Well...
Could anyone tell me if the Central Florida Lab test has been approved by the FDA? Since I have a half decent family doctor, I want to go back to her and ask her to test me, but I'm afraid that she will ask me about the FDA as well.
Thanks!
Posts: 5 | From Royersford, PA | Registered: Jun 2007
| IP: Logged |
quote:Originally posted by Teresa Pratt: Turns out this guy's friends with Alan Steere! He starts telling me about this whole "underground group" on the internet and how they picket with signs outside of his practice with signs that read "murderer"!
YES...That would be US!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
He also said that since my family doctor treated it promptly with 20 days of antibiotics, I no longer have lyme. But the good news is that now I have lyme antibodies in my system that will help me not catch lyme disease in the future!!!
HA!
Could anyone tell me if the Central Florida Lab test has been approved by the FDA?
The FDA S***S!!
Since I have a half decent family doctor, I want to go back to her and ask her to test me, but I'm afraid that she will ask me about the FDA as well. [/QB]
Don't worry about it....it's YOUR body!! You deserve to be WELL!!
Find a dr willing to run a WB through Igenex.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I figured it was you (us) troublemakers!!! Boy, let me tell you this doctor REALLY hates us. This is good, that means we are being heard, and we are being a thorn in their side!!!
What I can't figure out is why the perv made me get naked to listen to my heart, lungs and press on my stomach? Can't you do the same thing with your clothes on? Especially when he ALREADY determined that I didn't have lyme disease and that I shouldn't be there!!! Posts: 5 | From Royersford, PA | Registered: Jun 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I rather favor something like this:
"Dear Dr. __________:
"Fortunately, the crazy people at LymeNet have helped educate me, and I now know that having lyme in the past does not confer immunity to reinfection. I quake to think of your dispensing such misadvice regularly to patients with equanimity. Go look that up. Equanimity, that is, not immunity.
Fortunately, I now know that IgM and IgG antibodies in lyme disease are a very uncertain indicator of present infection status, and that in fact, people with late stage lyme are much more likely to have positive IgM. Significant antibody response on either marker, coupled with symptoms and exposure, should be treated.
Fortunately, I have read the dozens of articles documenting the persistence of borrelia burgdorferi in spite of repeated rounds of antibiotics. Clearly you and Dr. Steere have not read these. You are an embarassment to your profession.
Fortunately, I now know that the lyme specialty lab IGeneX has all required approvals and accreditations and in fact regularly outperforms most labs you would deem appropriate since it uses more than one strain of bacteria with which to test.
Thank you for your abyssmal lack of knowledge. Please don't send me a bill.
Sincerely,
Teresa"
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Thank you all for your responses. Yesterday, I felt angry, helpless and violated. I was not sure which direction to go in. Rest assured, I will write both letters TODAY! At least that will make me feel like yesterday was not a complete waste of time
Most of you don't know that I have been a "lurker" on this board for about 5 years, because my husband got bit 5 years ago and was very, very ill. I used to use the name "wildthing". (but I lost my password and had to re-register.) I don't post much, I just read alot of the posts and info and compare my symptoms with yours. Sometimes, being an "lurker", I wonder, can all of this truly be real? Are things really this bleak? Are doctors really this ignorant and misinformed? Well, yesterday was a wake up call for me. If anyone out there is lurking and wondering if this is for real, please know that yes, it is this bad, and worse, when you have to go through it yourself.
Thanks again! Teresa Posts: 5 | From Royersford, PA | Registered: Jun 2007
| IP: Logged |
posted
I would not mention any good labs that test for lyme to ducks. This is like waving a red flag in front of a bull and they could and have caused trouble for labs and docs.
Also, once a duck has revealed himself/herself to be a friend of Steere and one who hates lyme patients, there is no point in handing them any information whatsoever, or trying to debate it. Just raises the blood pressure and upsets the victim/patient. And you know what they say about trying to teach a pig to dance: it annoys the pig and will not succeed anyway. So then you have a mad pig that can't dance, and you have wasted your time.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
quote:Originally posted by Ellie K: Michelle, that letter is perfect. Just beautiful.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I wish I knew how to do that LymeToo!!! Michelle M Michelle M Michelle Michelle Michelle- that was
p e r f e c t.
Teresa, we could always FEEL you lurking*)!*)!! Sorry you had to go through that- you deserve MUCH better!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. There is a proud history in this country of underground movements- I have always thought of us as The Underground Railroad for Lymies anyway*!))! Harriet Tubman would be proud!*)*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
California Lyme said,
quote:I have always thought of us as The Underground Railroad for Lymies anyway*!))! Harriet Tubman would be proud!*)*)!!
Great analogy!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
quote:Originally posted by CaliforniaLyme: I wish I knew how to do that LymeToo!!!
Do what?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
(Sorry guys not topical!! Makes things dark like that!!! Emphasize them!!! It is very cool-))
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
You click on the Quote symbols and it does it for you. Or you can type [b] and then bracket /b] .. also put in the first bracket before the /b That will make it bold.
It will then "hide" the b's .. that's why I couldn't do the whole thing...it would "erase" the b's. BOY, that doesn't make sense!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
[b Thank you*)!*! b]
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Where on earth did this doc get the idea that once you get Lyme, you're immune to a 2nd or subsequent infection?
Talk about misinformation and a dangerous one to boot!
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[bonk]](graemlins/bonk.gif)
![[puke]](graemlins/puke.gif)
![[bow]](graemlins/bow.gif)
![[cussing]](graemlins/cussing.gif)
![[hi]](graemlins/hi.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic