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» LymeNet Flash » Questions and Discussion » Medical Questions » is an infection disease doc EVER ok?

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Author Topic: is an infection disease doc EVER ok?
monkeyshines
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I'm at a real cross roads in my treatment. I need to decide whether to pursue an expensive treatment plan that my LLMD recommends or just give up.

(I know that seems like two very stark options, but I'm five years into this and pretty much at the end of my rope.)

I just saw an ID doc listed in the 'best of' in my local city magazine, and it says that s/he has a specialty in lyme.

I love my LLMD, but was thinking for the first time of getting a second opinion (not an easy thing to do as there are hardly any LLMDs left).

Good idea? Bad idea?

monkeyshines

Posts: 343 | From Northern VA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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YES sometimes they are ok!

--------------------
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 | Report this post to a Moderator
adamm
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Once in a blue moon.
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lymeladyinNY
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Hi monkey - it depends on what the ID doc DOES when treating Lyme. What protocol/guidelines does he/she follow? An ID doctor can be a great help - if he or she is Lyme-literate and wants to treat it properly. Specialty doesn't matter, it's the person's character and his/her beliefs/expertise that do.

Lyme is expensive to treat no matter what, if you want to do it right.

It wouldn't hurt to get a second opinion, but I wouldn't fire my LLMD just yet.

Good luck! - Julie

--------------------
I want to be free

Posts: 1170 | From Endicott, NY | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
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Hi Monkey,

Be careful -- sometimes an ID doctor that specializes in lyme can be the worst duck of them all. After all, this is how Steere & Wormser and their ilk advertise themselves!

It really depends on their view of ILADS treatment strategies; good luck and I hope you do not give up!

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feelfit
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my dr. is ID and started me out on IV Rocephin. I am in to my 12th week and he says he stays with his patients until they are symptom free.

He is not ILAD associated but he is very good and I am happy that he accepted me as his patient.

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robi
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A friend of mine (with Lyme) started out with an ID doc in NoVA. He was Dr. S I think. Not known as an LLMD. He did IV abx and helped a bit but did not believe in co-infections or testing for them. Is it Dr. S you are planning on seeing?

My friend now sees an "real" LLMD.

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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merrygirl
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I love my ID doc, infact I made him my PCP!

He is the one who diagnosed me with the western blot within 3 weeks of getting sick.

He is really really the best doc I have ever seen.

With that said I see a LLMD that ins covers so we are kind of using a team approach right now.

Melissa

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bettyg
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we''ve got around 1 dozen only that i'm aware of that are GOOD LLMDS FOR OUR CHRONIC LYME!


see questions i just typed last weekend about intervieewing an infectious dr.. during an appt. it's here in medical; i don't have time to find it myself. very comprehensive and more comments were added.

be sure to read TINCUP'S ONE QUESTION CALLED IN PRIOR TO SAVE YOURSELF MONEY AND TIME!
***************************************

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roro
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I have gone to about 3-4 and all have been terrible. I am starting to wonder what they do. what do they treat?

I have all kinds of chronic infections, viruses and TBI's and none of them would do anything for me.

if they don't treat chronic infectins, what do they treat, besides AIDS? are they really just for AIDS?

they don't treat acute infections, because the primary dr's do that, when you only need a week or two of abx.

maybe they treat people who are so far gone that they are dying and in the hospital? like people with pneumonia, infected limbs from diabetes and such.

it would make more sense to treat them before they get that bad.

i really would like to go back to them just to ask them what it is that they do anyway.

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lymie tony z
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The ONLY time any I.D. doctor was worth anything for me was when he/she was lyme literate and not just saying they are "lyme specialists".

I think that is where we could differentiate these ID docs and ducks!

If you notice a lot of IDSA so called "lyme specialists" are of the Steere and company

philosophy of treating(or not treating properly), lyme disease and associated co-infections.

Where as "lyme literate" ID doctors are the type of doctors that either have lyme disease

and understand it, or at least follow ILADS guidelines.

Maybe I'm nuts but I just now realized that distinction. I think REAL llmd's never call

themselves "specialists" in reference to lyme because they at least realize that there is no

such thing! If you know what I and they mean.

ANY such LLMD would welcome another doctors opinions...while a "specialist" may be afraid

your second opinion doctor may believe in the ILADS approach of dealing with these diseases,

and your "specialist" would then become unmasked as a fraud.

You might do VERY WELL in asking us around here about this "whether to pursue an expensive plan"

because I would say you would get a much more honest response from those who have probably

gone down the road this "llmd" is suggesting.

At least elaborate on this "expensive plan". I'm really positive someone around here has gone thru it before you have.

We might be able to save you some money you may have spent on an ID duck!

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
beachcomber
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Yes, the right one can be good. Money is an issue for many of us and, a good IDMD can be a gift when trying to get insurance coverage for treatment of Lyme. I would be SOL if I didn't see an IDMD.

That said, you need to ask around and be sure the MD is willing to treat beyond the 28 day CDC standard of practice.

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Michelle M
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A few are gems. Some of our ILADS docs are ID doctors.

You COULD get lucky.

But being chronic, the odds are not terribly good.

Remember, the IDSA doesn't believe in 'chronic lyme.'

He will likely offer to treat you 'palliatively' -- i.e., treat symptoms. He may mock or belittle your LLMD's treatment.

I suppose it can't hurt to try. But I am not feeling optimistic!

Michelle

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monkeyshines
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Thank you all for your input. Not sure what I'm going to do. I'm going to post separately when I have more info and energy to see if anyone has any thoughts re: my proposed next tx protocol.

Even though we don't name names, I do want to reiterate that I think my LLMD is awesome.

I just feel like it's almost irresponsible that I keep making all of these serious decisions and doing serious things to my body without any kind of second opinion. What other serious illness would you do that with?

But it's kind of hard to get a second opinion when some of us can't even get a decent first. TBDs suck.

monkeyshines

Posts: 343 | From Northern VA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
   

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