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07/28/2007 02:24 PM

How is an LLMD different from an ID doctor?

CindY
CindY  
Posts: 21
New Member

I don't really understand what the difference is between an LLMD and a doctor that deals with infectious diseases. Is the LLMD solely specialized on Lyme, and does nothing else?

And why is an infectious disease doctor not the best choice for treating Lyme? Is it because they don't follow the long-term antibiotics protocol?

From my hard, but short experience with Lyme, I still don't understand how the LLMD approach is different from those of other doctors. Are they sort of "rogue" doctors? Sorry if the questions seem dumb, but I'm really trying to understand the differences, and all the discussions I've followed so far were sort of "too advanced", I felt I was missing something, or got in in the middle of the conversation. Don't know if I make much sense...

All in all, is it very wrong to let an infectious disease doctor manage my Lyme? He seems to know what he is doing, and I started to trust him very much. Wouldn't want to change him, especially since I am feeling better.

Don't know what to do, and don't really understand... Sad

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07/29/2007 09:48 PM
RuthH
RuthH  
Posts: 37
Member

Hi Cindy,

This is only my opinion & I'm not in any medical profession, but I've found through personal experience some or most infectious disease docs do not understand Lyme, so they don't know how to treat it.

Actually, the one ID doc I went to said I had arthritis & wanted me to take Aleve.

Most things I've read in discussion forums, ID docs have been consistent in their regard as to what is wrong with a patient when it comes to Lyme; it's always something else.

They also have been found to be very rude when the subject of Lyme is even mentioned.

The LLMD is not a rogue doctor by any sense of the word.

They can & do see patients for things other than Lyme; they can specialize in many different fields of practice.

My past LLMD was in Internal Med., & my current LLMD is Family Med. Neither one cared only for Lyme patients.

The thing with an LLMD is they have taken the time to educate themselves on the disease & also taken further classes (at their own expense)to educate themselves in being able to diagnose & treat the disease.

They are or should be able to judge whether a person actually has a tick borne disease or something completely unrelated.

The first LLMD I saw is in an area (PA) riddled with ticks & disease & this 2nd LLMD I now see is infected personally with the disease as is 1 child.

In both cases, there was a reason why each chose to treat tick borne infections.

My previous LLMD told me at my first appointment, depending on the outcome of the test he was having done plus my symptoms; if he felt I did not have Lyme he'd tell me & wouldn't have me visit him any longer. That alone says he wasn't in it for the money.

As it turns out, I do have Lyme, have tested positive on my Western Blot & have had a ton of symptoms to validate the diagnosis.

Symptoms are what lead to the diagnosis & the tests are used only to confirm the diagnosis. The tests are never to be used to make the diagnosis; just thought I'd add that in.

I am also responding positively to antibiotic therapy; other mimicking diseases would not respond to abx therapy.

If you feel you can trust the doctor you're with (that's worth so much), he knows how to treat the disease & is willing to overlook any controversy concerning length of treatment, then I'd say stick with him.

As with any doctor for any reason, if there comes a time when you feel you no longer trust his/her judgment, diagnosis, treatment, etc; then you have to make the decision whether to leave or stay. It's your body & the decision is ONLY yours to make.

Currently, I'm following the treatment regime of a doctor from Cape Cod via my LLMD locally. That doctor from Cape Cod is a well known & well respected LLMD.

This same doctor/LLMD is also an Infectious Disease doc. You can't rule them all out & there are the ones who actually know what to do & are willing to do what it takes to see their paitent recover.

I hope this has helped shed a little light on your questions. Ruth

Post edited by: RuthH, at: 07/29/2007 23:54

edited; i broke this up; good info that we neuro lyme folks couldn't read as long paragraphs. bettyg, iowa leader

Post edited by: Bettyg, at: 06/26/2010 12:19 PM

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07/30/2007 05:03 AM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

Great response Ruth...

Yes, I have heard most ID docs don't really understand lyme....as is the same for most regular docs of any kind. ... many lyme patients have had a myriad of dx before lyme was finally diagnosed....

LLMD means lyme literate doctor.... they can be any kind of doctor, but like Ruth said, have taken it upon themselves to become educated on lyme...

and no, just because you walk into a LLMD office doesn't mean they are going to stick you on treatment for years.... I have talked to several people who go to several different docs, and one question we all tend to ask is "does everyone who walks in here thinking they have lyme, have lyme?"..... the answer is usually no. Most lyme docs are NOT in it for the money, they are in it to help, as it seems we can't seem to find help anywhere else!

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07/30/2007 12:49 PM
RuthH
RuthH  
Posts: 37
Member

Thank you, I just try to answer where I think I can help. That's the big reason I belong to 3 forums; I just want to help. I've researched this about 400 hours worth, so I have answers in my files, & if I can shed light for someone else; I give it my best.

I agree about docs; my family doc wanted me to go to "the MS clinic & get on the drugs". He & I went toe to toe arguing the point & I ended up walking out on him & pulling my records from his office. He had been my doc for over 20 years.

For me, it's been a strange journey. I had an eye problem, went to my eye doc,was diagnosed with Optic Neuritis, had to have an MRI, was sent to a neuro who told me, "You don't have MS, you might get it in the future, now when do you want to start the MS drugs?" That blew my mind. If I didn't have MS what was his reason why I would take MS drugs? He said, "we do that just in case". Those drugs are dangerous & to take them just in case; nope things didn't make sense to me. I never went back to that guy!!! My family doc said I had MS & agreed with the neuro I needed to be on the drugs.

I was right, they were wrong (recently tested pos by CDC standards), & they're lucky I was the stubborn person I am. If I'd have gone on those drugs "just in case" & it turned out I shouldn't have been on them, they'd both be staring down the barrel of a lawsuit!!!

Not to mention, because of the above, not knowing where to turn, not wanting to believe MS but not knowing what else could be wrong with me & the docs didn't seem to know; I ended up mentally in a very dark place; I was searching for a way to kill myself.

I had to do it so it would look like an accident so my husband & children would get the insurance. It was 3 of the darkest days of my life, but I slowly pulled my way up & started researching. I'd never really done much of that so I didn't know what to look for. I started finding answers & basically I diagnosed myself.

Now I'm a research junky! I'm very selective of the sites I look at; I stay with docs, universities, Lyme associations, etc. There's a whole lot of stuff out there that is way off, so you have to be very selective.

Thank God I wasn't able to kill myself; I would have caused so much pain, missed out on so many beautiful things & for what? For the misdiagnoses of 2 idiots!!

Ruth

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06/25/2010 07:56 AM
Deny
Deny  
Posts: 114
Member

THANK GOD YOU EXIST.
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06/25/2010 02:17 PM
cmany
cmany  
Posts: 6930
Group Leader
I'm an Advocate

OOps - you Meant IDSA (Infectious Disease Society) NOT ILADS - IDSA says 12-21 days - ILADS are who trains docs to become LLMDs...and protocols are much different from IDSA
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06/26/2010 12:50 AM
ten1988
ten1988  
Posts: 745
Member

Oopsie I was close. lol
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03/24/2011 06:06 PM
Jensen16
 
Posts: 754
Member

Cyndy,

Have you read the book "Cure Unknown" by Pamela Weintraub?

Have you seen the movie "Under Our Skin"?

The book is an easy read and very informative, excellent biblography. Highly recommend.

Both movie and book provide insight.

Our experiences are similar.

Bottom line for us is that our teen in getting better under llmd care. She was going steadily and rapidly down hill before.

Significant problem is the other doctors caused a delay in correct diagnosis and treatmennt, resulted in chronic disease. My kid has lost the past 2 years of her life because the doctors I took her too when she first got sick missed the diagnosis and caused her to miss her opportumity for the early treatment window. You don't get a second chance with these pathogens.

Take Care.

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09/24/2013 07:31 PM
Not2bforgot10
Not2bforgot10  
Posts: 17
Member

I cured my chronic lyme disease and fibromyalgia and am writing a book on it! If I can do it, YOU guys can do it, too! Please find me on YouTube or Facebook, thanks!

-Emily A. Cox

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09/24/2013 08:30 PM
pampe
pampe  
Posts: 2353
Group Leader

Very old thread being closed
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