posted
Besides symptoms obviously.... because they are irrelevant to mainstream MDs.
I have an appt with my ID doc who totally dropped the ball on me. He's heard my piece but said he'd like to see an article on CLD. Realistically, he won't watch Under Our Skin.
What could I take to the appointment? I need something with brevity, not Burrascano's protocol. A study maybe? Something on a single sheet of paper that he will realistically read and maybe show to his colleagues.
I've shown him youtube vid's and other things, I'm just wondering if there is a study, maybe by another doctor I could take him? Something with the most impact. Something that's not from one of us "dumb civilians"...<ugh
Thanks for any input Posts: 109 | From PA | Registered: Feb 2012
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-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- He "totally dropped the ball" on your case and you are returning for more of his incompetence & bad attitude?
First of all, why in the world are you even going to see this person again? Why, oh, why?
{Now, I know why and I've done it. Many of us have. But I've been knocked down so many times that I just want others to be sure to not even engage in this downward spiral of hoping for good stuff from idiot doctors.]
I hate to be the one to break it to you but he is not wanting to learn. He asked for the article most likely to shoot it down.
He does not know and could not possibly learn what he needs to know soon enough to treat you at this point.
If he will not even watch "Under Our Skin" I do think you are setting yourself up for an abusive encounter.
I've been there, done that. Thinking that if they could just read this, they'd "get it" but I've had articles literally thrown back into my face.
Please, find a real ILADS-educated LLMD. There is absolutely no indication that this ID doctor has the qualifications you require.
And you will pay a great deal money for trying to educate him (and pay in other ways with red flags on your medical file).
You will be walking into an abusive situation. Even if unspoken, the dynamic he's set up with his "prove it" stance is not going to work.
He is not going to see you as a brilliant educator (no matter how much that may be true).
I would bet ever penny I have on that.
Bottom line: Even if by some miracle he says to you: "Oh, now I get it. Thank you, oh wise one for bringing this to my attention. Now, let's get you well, no matter now complicated this all is, we'll start right now."
[Really, many of us have wished for that very scenario. It's a fairy tale.]
Treating lyme is not possible from a cookbook / recipe approach. You need a doctor who has been learning for years and successfully treated many with "lyme complex" in all its intricacies and nuances. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I hope he wasn't planning on charging you or your insurance co for that visit.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The diagnosis he gives will be a psychiatric one, too. If that's not already been dumped on you, step away before that happens.
ID doctors label most with chronic anything as "hysterical" or "conversion disorder" (if they've been scouring the internet).
There is a whole host of other psychiatric diagnoses that are handed out like candy to those with chronic complaints.
Again, if you'd not yet been misdiagnosed by those who don't know, just don't invite that. It can be very hard to proceed from there with any doctor in the system. Everything winds up in a computer file these days and that will follow you forever. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Aperture. That's very good. I forgot about that study. I have a week to think of something and that might be it.
Keebler, lol. I have been used, abused, and passed around from dozens and dozens of doctors, told I'm crazy, dx w/ dozens of diseases/disorders, and even institutionalized before I was dx w/ lyme.
Now I see a highly trained/renowned ILADS doc that many on here see and am in good hands.
I continue to see a couple docs to get refills on other med's for things that lyme has caused. Why not mention it while I'm there?
I always take some type of lyme info in on every other visit. Can't hurt. My insurance covers it and as far as my files, they're screwed already.lol
Thanks guys Posts: 109 | From PA | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whew! Quite relieved to see that you know the score and are not expecting the ID doc to treat you.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Not sure this what you are looking for, but the godfather (in more ways than one) published this a long time ago, before someone blew the whistle and caused an about face in mainstream lyme thought. Seems to me this supports the idea of continuing infection.
----------------------------------------------
Arthritis Rheum. 1979 May;22(5):471-83.
Lyme arthritis: correlation of serum and cryoglobulin IgM with activity, and serum IgG with remission.
Forty-eight patients with erythema chronicum migrans (ECM) were studied prospectively for 6 to 18 months. Twenty-six patients had no later symptoms, but 22 subsequently developed Lyme arthritis and 9 of them also experienced neurologic abnormalities. Eighty-seven percent of patients with active ECM followed by subsequent involvement had cryoglobulins containing IgM compared to only 13% of those with active ECM and no later symptoms. The former group also had significantly lower IgG, C3 and C4 levels. Sixty-seven percent of patients still had serum cryoglobulins when neurologic disease was most active, and 45% had them when joint symptoms were most severe, but only 11% continued to have small amounts in remission. The number of patients who continued to have serum cryoglobulins with recurrent attacks of arthritis decreased with time. In contrast, patients always had cryoglobulins in joint fluid, a finding Lyme arthritis shares with rheumatoid arthritis. The cryoprecipitates from 2 of 10 patients contained particles with internal structure, but their viral nature is problematic. All components of antisera obtained from goats and rabbits immunized with cryoglobulins were absorbed by normal human sera. The amount of IgM in cryoglobulins correlated directly with serum IgM, which generally rose during exacerbations and fell during remissions; serum IgG and IgA moved conversely. Thus, IgM was an important correlate of clinical disease activity and IgG or remission.
PMID: 109097 [PubMed - indexed for MEDLINE]
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
-------------------- 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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Or the book by one of the founding members of the IDSA- an infectious disease doctor- with over 50 case studies proving the existence of chronic Lyme disease?
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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