Topic: what is the best info to bring to a non LLMD physician about Lyme and co's?
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Sorry if this question is answered somewhere obvious -- i am brain dead right now.
Is there something on this site that we can simply print out to bring to our duck's office?
something short (I've brought 2-page stuff to my PCP only to have her glance at it then throw it right back at me, saying I would have to go to a specialist for that)
so -- where is there a short, informative one-page synopsis that we can take with us to ducks, just so they have some small idea of what we are dealing with?
Posts: 1173 | From USA | Registered: Nov 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Believe me they don't even want to know.
My regular PCP acted like he really wanted to see my dvd "Under Our Skin", so I dropped it by his office middle of Dec. He actually moved to a new office just recently and I had to go in and see him and asked if he had watched the dvd yet. He acted like he was confused, not sure exactly where the dvd was at that moment.... blah, blah, blah. In other words, he has never bothered to look at it.
Why.... because he really just doesn't want to know. None of them do!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
sutherngrl, i agree!
still, i would like to have a piece of paper i could hand them if they express an interest. you never know who might read it, even if the doctor does not.
(maybe the janitor after the doctor throws it in the trash?? lol. well, hey, maybe the janitor knows somebody with Lyme -- you jsut never know)
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sutherngrl
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Member # 16270
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Cottonbrain, so true. You never know who might end up getting informed.
I didn't mean to sound so down about it!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I know it's not short, but I always provide a copy of Dr. B's latest diagnostic and treatment guidelines from Oct 2008.
I highlight info for them especially about diagnosis, diagnosing later disease, western blot info (which bands are significant) and I write Igenex lab's website in the margin.
I also highlight some info about symptoms, treatment and coinfections.
I have also provided copies of the essay "when to suspect lyme" which has incredible info.
I also take a copy of the ilads guidelines.
If you want something informative and shorter with a great symptom list, you could take a copy of the booklet "Lyme disease and assoc diseases, the basics" published by www.LymePa.org. You can find info about it on their website.
The pamphlet "Lyme R Primer" from the Lyme disease assoc is good too. you can send for up to 200 pamphlets (can mix and match) for free. www.lymediseaseassociation.org.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I brought an entire lyme binder with me to see my last neuro... burrascanos info, when to suspect lyme, why lyme tests have flaws, all of my symptoms, timelines of my symptoms, past blood work, notes from another neuro about enceph/menin, multiple lyme test information...basically a whole slew of info.
And her thought...its not lyme, its all anxiety, and you have briquettes syndrome (self created dillusions), etc. I only found out that was what she thought of me when I requested and read her drs notes.
Talk about a total bunch of horse hooey.. sorry, but she was so hell bent to discover it was something else other then lyme, that she completely disgarded all info I presented to her. She even in her notes admitted that she refused to administer abx on a trial basis because she did not believe I had lyme...all based on prior elisa ab tests...which are notoriously innaccurate.
Take your health into your own hands. Drs are very knowledgeable, but when it comes to some subjects, they are ignorant, and worse yet, ego maniacs who refuse to acknowledge that perhaps that the patient really does know more then them about dx and tx of lyme.
Many months/almost a year later, I still have not gone back to that neuro. She wanted me to return, but I told her I was being treated for lyme. They asked how I came up with that, and I said, I saw an expert in the field who clinically diagnosed it, and, I had serological testing done that proved it.
I havent heard back from her since, although my wife and I currently have an insurance claim battle going on against the hmo for misdiagnosis and having to seek treatment outside the hmo when they refused to give me proper treatment.
Ah, the love of lyme... and neuros... don't get me started....
Posts: 514 | From . | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You asked: "Is there something on this site that we can simply print out to bring to our duck's office?"
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If you think your doctor is a duck, that pretty much says he's not much of a doctor.
For doctors who are simply not aware - perhaps never had reason to learn more - some do want to know more.
I would not call them ducks, though. To me, a duck is a doctor who has illustrated a conscious decision to ignore lyme and the research around that and other tick-borne infections.
ILADS has a training program for doctors who want to know more. I would begin there - if you think your doctor is open to learning. It's best if the materials come from other doctors.
IMO, though, for you to call your doctor a duck implies that you do not have the respect and confidence that you should. Why continue seeing someone who is not up to par - for any reason?
I guess I've been beaten down too many times that I refuse to try to convince any doctor of the seriousness of this if I have gotten even the least bit of bad attitude from them.
It's a losing battle and a waste of the little energy I have.
I agree with the advice you got. I brought the symptom checklist with me from Dr B's lates dx and treatment guidelines.
Wim,
With you saying that..I would hate to read what the docs have noted about me. Probably worse than yours. I know mine all think I am crazy but if I am not going to fight for ME and my health, who the hell will?
Posts: 171 | From the land of oz | Registered: Feb 2009
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bettyg
Unregistered
posted
nothing i'm aware of for 1 page!
it would almost have to be link after link !!
you might try this ...
Betty G's LYME/TICK BROCHURE with 2 LDA brochures combined together plus other stuff from Betty including:
lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
prints out to 9 pages 2 columns per page!
i also used on page 10 the front/back side of TICK CARD that lda has!! very helpful!
It covers why this bacteria is different from any other.
It explains why the tests are not good and that studies that use this test data are flawed.
Posts: 472 | From New Jersey | Registered: Dec 2007
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One thing I would offer is that you walk into the doctor's office with the attitude and expectation that *of course* they will want to learn about Lyme.
It's realy hard to maintain this attitude, I know, because we are so often rebuffed.
However, I think we can project negativity towards the doctor even as we try to enlist them to help us. Understandable, but not helpful.
In my life-before-Lyme, I was a grassroots activist, and my job was often interacting with the public to tell them stuff they didn't want to hear. I found that when I expected people to be rude or mean, that's what I got. But when I smiled and acted like I had exactly what people *wanted*, I would get really positive reactions.
It was often a subtle difference in presentation, but it really changed things.
The way I presented my new PCP with the information was to say, very cheerfully and conversationally:
"My main medical issue is that I've got Lyme disease, and I've got a great doctor who's taking care of that for me. But I do need a primary care physican for the more routine things in my life.
"When you look at my prescription list, it might look a little weird--all those antibiotics and supplements--and I know that Lyme can be controversial.
"Anyway, I brought you this [show printed papers] so you can read up on why I'm pursuing this treatment option. You know, if you're interested..."
At that point, my new PCP could have:
1) Dismissed me, thereby revealing herself as a duck who I should stay away from; or
2) Taken the information.
She took the information! And was excited to learn more!
Anyway, that's my experience, and I know how fortunate I am to find a supportive PCP. (I went through my share of ducks before getting a dx.)
But information + attitude will help us win our fight.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
wow, everybody, thanks for all the suggestions.
I'm going to look at every link you guys provided and print out a bunch of stuff so that i can go through my file whenever i have a dr visit and pick out something new to bring.
(sorry about the duck ref, keebs, i shall try to keep my attitude in check!)
In my state, doctors do not believe that Lyme Disease exists here. I have seen over forty doctors over the past fifteen years and only two were open-minded about Lyme -- unfortunately neither knew how to diagnose or treat.
annaL, your talking points are very helpful. i will print those out and try to remember. Ha! it would be funny if i had to read the talking points from notecards! then i'd love to see what the dr writes in his medical notes!
lots of good info provided here, all. thanks again!
Posts: 1173 | From USA | Registered: Nov 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Wouldn't hurt to include the Lyme Disease Obituaries (on General Support). That might get some attention.
My PCP only agreed to review Dr. Burrascano's Guidelines only after 9 months of exhausting all other avenues of testing.
At that point, it did open his eyes and he was agreeable to sending my blood to IgeneX, but at that point I realized the only one who could help was an LLMD.
I was glad to open his eyes, but did not want to be the guinea pig while he 'learned' how to treat long untreated, chronic lyme disease.
I would suggest the same to you - travel out of state, and get treated by an LLMD. It could just save your life.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My experience indicates you can try forever, but they just don't care. The only success story here is from a naturopath. That's a different ballgame.
Regular docs are FORCED to play ignorant. If you believe otherwise, you've got blinders on. Do you really think that many highly educated individuals can't comprehend information that us sick Lyme patients can? C'mon!!
The 'golden rule' of medical school must be to say it's never Lyme, it's never Lyme, etc.
it's way beyond lack of knowledge, lack of time, etc. No one can convince me otherwise. Save a tree and don't print info that'll go straight to a garbage can unless the IDSA changes their policy. Y'all think that's happening soon?
If it take a PCP 9 months to read 38 pages of info after you've been ill forever. You know what that means? The doc should've been dumped 8 months and 30 days beforehand. It shows he/she cared less about your life. Dr. B's guidelines are easy to read and dumbed down for general public use.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I'm grateful for all the suggestions. I think it IS worth the time to bring a short summary to caregivers--
not to diagnose or treat Lyme, but just to help the other caregivers (eye doctors, ENT's, dentists, PCP's, gynos, nurses, pain specialist) whom we have to deal with fairly regularly.
Believe it or not, some of my caregivers do express an interest, but their ignorance quickly becomes an embarassment to them and me -- i can think of several times i wished i had a short explanation of Lyme Disease to carry with me.
Posts: 1173 | From USA | Registered: Nov 2007
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