posted
After carefully evaluating all of my lab work, including my positive Elisa, my primary has given me a firm Dx of Lyme. She's also done follow up lab for co-infections (things I can't even pronounce).
She's informed me that I'm being reported as an official "case" of Lyme to the powers that be.
Evidently, if you're Dx'd with Lyme, you get reported.
Then, the VA leaves a message on my phone informing me that I will now be seeing a "new" doctor: INFECTIOUS DISEASE SPECIALIST.
What is this? What in the world is an "infectious disease doctor"? Are they anything like an LLMD?
I'm beginning to feel a bit uncomfortable. My primary has suddenly found it necessary to run a ton more tests on me. I can't believe it's taken them since March, (4 months later) to finally do something about these lab results.
Posts: 47 | From New Mexico | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cat said..
"What is this? What in the world is an "infectious disease doctor"? Are they anything like an LLMD?"
An infectious disease doctor (duck) is the opposite of a LLMD. There are a few exceptions.. but most ID ducks would turn a pristine lake into a septic tank if they were tossed in it.
I will post a link below to a post where I just did some splanning about ID ducks treating Lyme. May I suggest you prepare yourself too?
Hopefully others will add to this conversation. I must appologise.. my head had to be stuffed in a vise grip today to keep down the swelling.. so I am NOT in good thinkin' mode. Sorry.
Another note. Be SURE your primary has a consent form for you to sign stating you are aware there are 2 treatment protocols.. and you prefer ILADS.
If they need help with that.. have them get in touch with me.. OK?
posted
It is great that you are diagnosed and are reported as an official case. It is not great that you will be seeing an ID doc at the VA. Neither has a good record of treating lyme effectively, so be prepared to be disappointed. You may have to go outside the system for good treatment. Unless you have a early case, then there is a better chance of their treatment working for you. But a long running, previously untreated case is not going to be treated well by a VA ID. Come back and tell us what happened and start thinking about your other options.
Posts: 8430 | From Not available | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning Cats,
Now that you have been reported as an official case, the VA is wanting to control your treatment. I am assuming this is because they will be footing the bill?
We can't automatically assume that it is due to them wanting to give you less than adequate treatment by sending you to an ID doctor...
But, we can make a judgement call based on other cases that would seem to offer that conclusion.
If your primary is willing to run more testing to see IF you are dealing with co-infections...I can also assume that he/she IS willing to work with you on this.
I would suggest that you do your best to keep that door wide open. I would suggest that you supply her/him with all the information that you can get your hands on that explains adequate treatment approaches.
Start with the ILADS guidelines the Southeast PA brochure "the basics" Dr. B's guidelines the LDA's website the ILADS website
AND the phone number of a good LLMD that is willing to consult long distance with your primary to treat your illnesses.
If you are needing help locating any of the above, please let me know.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I echo the folks above!!! They know what they're talking about. ID ducks are despised by many here, because they follow the standard guideline that says Lyme is cured in 4 wks [or less].
YOu know that's not true, so if you want proper treatment you'll have to fight for it. Do you think you would be able to stay with the primary dr?
I wonder if you can see the ID once just to appease the VA...then bail out??
I think it's a good idea to do what Tincup said about the guidelines. That way the VA has it in writing that you want to be treated according to the ILADS guidelines.
The VA may not CARE what you want, so there is the rub.
Hang in there, Cat.....we'll get you through this. Be ready, and be armed!!
posted
Dear heart, I hate to give you the bad news but given all the garbage going on the LD these days you are aboaut to be screwed. You may be sure that you will not get adequate treatment and you will probably have a change of diagnosis. They are determined that there is no such thing as LD and that the treatment is no more than 28 days. so count on 1. being sick for the rest of your life and dying of a painful illness or 2. going to Mexico or some such and getting oral antibiotics and treating yourself because the ducks are not going to do a damned thing for you.
Cheers. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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quote:Originally posted by Thomas Parkman: so count on 1. being sick for the rest of your life and dying of a painful illness or 2. going to Mexico or some such and getting oral antibiotics and treating yourself because the ducks are not going to do a damned thing for you.
Option 3: Find a good LLMD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
The Ifectious Disease docs in New Mexico and El Paso TX area are horrid. Very very bad and will know NOTHING about lyme. ASk them how many successful patients have they treated for lyme disease. Their answer will be none. THis is a question many specialists are asked when referred to by primaries. Go ahead and ask----I DARE them to even say one.
Get to a LLMD---fast.
Did you acquire Lyme in NM? That is a whole other can of worms. Had the state epidemiologists on my phone a lot in 2000. But turns out I didnt get lyme in NM----boy were THEY relieved.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
it was an infectious disease doctor that hurt me real bad...dont go... they cant help you... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
I agree with everyone above. If you want to know what to expect check out the ID guildlines on treating lyme of the ILADS website. then compare them with the ILADS guidelines. most ID doctors don't belive in abx longer than 4 weeks. They're may be expections to this but its in their guidelines and they don't like to reasearch or look whats out there, they just treat you by their guidelines. See what this one is all about maybe even start treatment with him/her but i'd look for a LLMD in the mean time for a second opinion and more accurate treatment, since after 4 weeks according to their guidlines, your cured.
Posts: 31 | From Los Angeles, Ca | Registered: Oct 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The reporting to the CDC was probably seperate than the VA calling you. We want the CDC to track Lyme...if more cases are reporting we could get more attention.
The VA probably responded when they received the doctor's bill with the diagnosis code. You should talk to somebody with the VA to find out how much flexibility you have.
There are some ID docs who are LLMDs (Dr. J in NC for one).
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Meow baby...
I concur with the above statements...
I have had first hand experiences with the VA in Cleveland and Brecksville...
And the VA down here at Bay Pines in florida...
You'll most likely get treated according to HMO standards cuz the VA is the biggest HMO in the world... Then you'll be told any lingering symptoms are residual untreatable irreversable cuz NOW you have an auto immune deficiency...
That's why we call ID's IDiots...these ducks are in a subspecies class all their own....
Make dang sure you get a copy of your lab results and the notification from the CDC itself telling you that you have lyme disease....VERY IMPORTANT PAPERS...
We'll be prayin for ya darlin........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
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quote:Originally posted by lymie tony z: Make dang sure you get a copy of your lab results and the notification from the CDC itself telling you that you have lyme disease....VERY IMPORTANT PAPERS...
We'll be prayin for ya darlin........zman
VERY good idea!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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