posted
Is there an advantage to seeing one vs. the other (ID/Rheum)? Also, is the title of LLMD an official thing, or is this simply how the community refers to drs who have an awareness of Lyme and how it should be diagnosed/treated? I am looking at a few Willow Grove drs. THANKS!
[ 19. April 2008, 12:43 PM: Message edited by: jwick25 ]
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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quote:Originally posted by Lymetoo: PASS on the ID ducks AND the rheumies if you want to be evaluated or treated for Lyme disease.
They won't diagnose you with it under any circumstances OR they will dx you with it and then not treat it past 4 wks....leaving you hanging!!!
LLMD is a term the Lyme community has coined. The doctors are all MD's, of course.
Thank you so much for the reply. So then, does this mean that seeing a primary care/family doctor who has an awareness of Lyme, its symptoms and proper diagnosis/treatment is desirable? I know of a local MD (family practice) who diagnosed someone a few years ago with Lyme and treated her. She was never sick again. I was thinking that I should not go to him because he doesn't show as an LLMD. However, if LLMD lists are created by compiling doctors we know of who have an awareness...seeing this doctor may be a good thing..?
When I was in the hospital, 2 IDs saw me and never thought to check for Lyme. This family doctor/internist mentioned above took one look at his patient and highly suspected Lyme. I was told that he sent her blood work to both a local lab AND a lab in NY. Both came back positive.
It does seem that many LLMDs are, in fact, family MDs.
Is there another typr of dr/specialist I should be looking for?
Thank you so much!!! jwick25
[ 21. April 2008, 01:42 PM: Message edited by: jwick25 ]
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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quote:Originally posted by Lymetoo: When I was in the hospital, 2 IDs saw me and never thought to check for Lyme. =================
How long have you been ill?? Do you really want to chance your health on a dr who may know how to treat Lyme, but not its coinfections?
Have you had a positive Lyme test? [/qb]
Hello,
My results have not yet come back, but it should be within the next day or two. While they are testing for Lyme and Ehlrichia, that was it...no other tick-related illnesses. I have my next appointment on Thursday, and we will have a lot to talk about. I just can't understand how a doctor tests for Lyme and ignores testing for the other possible related infections...? Of course, I didn't know about them at the time of my last appointment. So now, if I have to go give more blood, I am adding all those additional days on to my suffering. It's so frustrating!
I did make an appointment with a good Rheumatologist, but I don't yet know how he would test for/treat Lyme.
The MD I mentioned has a great reputation and sends blood work to NY as well as to a local lab. I'm going to call his office and ask some questions regarding co-infections and long-term treatment.
Thanks! jwick25
[ 21. April 2008, 01:42 PM: Message edited by: jwick25 ]
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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posted
There ARE no "good" rheumatologists when it comes to Lyme.
What do you hope to accomplish by going to see one?
The only way I'd go to one is if I called the office and asked if this doctor uses antibiotics for RA. Then, MAYBE I'd check him/her out .. IF THEY SAID YES HE/SHE DOES!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Don't bother with either a Rheumatolgist or an ID Duck, they are both terrible choices. You need A LLMD is you have Lyme and co-infections.
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quote:Originally posted by Lymetoo: jwick...How was your appointment today?
Hello. Yesterday's appoinment was a disappointment as my husband and I were not thrilled with the doctor I had to see.
My first batch of tests came back. Of the three main titers (I think that's what they are called?),
2 came back neg/non-reactive, and 1 came back reactive.
I went for additional blood work earlier today so that they can test further on the reactive portion.
Off the top of my head, I forget the term...Bar....it'll come to me. They did Western Blot and tested on many related infections...all negative.
Of course, the doctor was very big on the anxiety angle, and I had to set a few things straight.
He didn't want to continue supporting my work disability claim because my tests have thus far come back negative, and I "look ok."
I called the office back and complained...something I NEVER do. The Physician's Asst., who I really like, called me at home and was completely supportive!
They are now supporting my claim and testing further.
They are sending me to a Rheumatologist on Monday because they feel it's the next logical step since I've been having bone/muscle pain.
I think they want to be able to diagnose or rule out any auto-immune diseases. They do not want to start me on any antibiotics as they can mask any other existing illnesses.
I was in the ER 2 nights ago, and they took more blood to test for Lyme and tick-related illnesses that they can compare to the previous results.
They will see if anything has changed.
I'm hoping that we can get to the bottom of this.
Even the doctor admitted that this has been going on too long to be a virus, as he initially thought.
I have read comments about Rheumatologists not being especially helpful with this, but I was told this doctor specializes in Lyme and other tick-related ailments.
I hope everything pans out soon. It's very difficult to stay strong when you feel like garbage
and are scared that you'll never get better. I'm just trying my best to stay positive.
Thanks so much for asking about my situation!
I hope all of you are well or getting well!
Talk to you soon! jwick25
[ 21. April 2008, 01:42 PM: Message edited by: jwick25 ]
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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posted
Well, don't hold your breath on the rheumie. I hope your dr is right that he/she knows something about Lyme.
Quite often, drs will say they know all about it and they know NOTHING!!
The problem with your current testing is that these labs [that most drs use] do NOT test for all possible bands on the Western Blot and the ELISA titers are pathetic tests.
You will eventually need to see an LLMD if you want to "get to the bottom of this."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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