posted
I live in NY and have been being seen by an LLMD, who I am just not thrilled with. I really can barley afford to see her as it is, and switching to a different LLMD would be much more expensive, and a waste if they didn't work out either.
A friend suggested that we go to the Lahey infectious disease clinic in Boston. I am not so much looking forward to it because of horror stories that I have heard of infectious disease doctors, but Lahey is supposedly the best medical center around.
And I feel Im running out of options.
Just wondering if any of you have any experience with Lahey and your thoughts.
Posts: 66 | From New York | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most likely, any "infectious disease center" associated with any medical center is going to be full on IDSA minded. And that is just not adequate. Not by a long shot.
As you ask more questions, the detail below is a good guide for starters.
I hope you get other replies, of course.
Also contact all the ILADS "minded" lyme support groups in that area and the nearby state groups, too.
In the meantime, even if they use various approaches, still, why you need an ILADS educated LL doctor explained here:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No. No. No.
While there is some good detail here and actually more than any IDSA affiliated doctor group would have mentioned in past years about coinfections, there are also many glaring errors.
They are clearly, very clearly aligned with the IDSA for assessment [ELISA must be positive first and that's just not very likely as it's an inferior test} and treatment guidelines [which are not at all adequate].
So, no. From even the page where they present themselves at their website, I would say "no" they are not adequate.
The testing requirements, alone, are in major error.
LAHEY - Lyme Disease and Other Tick-Borne Illnesses in the Northeast
[just one error of many] . . . Although Lyme disease can cause many conditions, complaints of common symptoms such as fatigue and aches are often incorrectly attributed to Lyme disease when another condition is to blame. . . .
Just a bit of insight into why their testing methods are just flat out wrong:
As you say that you are "running out of options" if you cannot manage the funds to see an ILADS educated LLMD or LL ND, then there are some ways to take matters into your own hands. In the "How to Find a LL ND" in the links set above, there are some other ideas.
If one has "no other option" than to see an IDSA doctor [who is as bound to their guidelines as with Lahey states in their website and links set],
then, please consider that not an option at all. Many of us here (myself included) went down that "magical thinking that turned into a grizzly road" and found this out the hard way. Often, over and over. To great medical dismissal, actually.
Very rarely, there has been an ISDA doctor who might be more educated and able to think a bit outside of the box. But Lahey's own information page does not suggest this as the case. Lyme support groups are the best place to find the range of treatment options for you in your area.
Back to Lahey's info page connections: The IDSA could not be clearer: it does not consider the aspects of lyme that those of us who have done study in this area know to be vital.
There are other ways, though. Sure, it's best if one can see a real LL doctor. Of course. But, if that is just not possible, there are still some other avenues to explore at least to hold you over. There are other options, always.
I'm so sorry you are in this position. Hold high to your expectations of excellence & knowledge in a doctor, even, especially regarding lyme - [yet in the sad realization that it's not an access everyone has, sigh]
- and your right to not accept bad treatment just because you may not YET have found a good LL doctor, or figured out some other path that makes sense and has achieved success for many before you. -
[ 03-21-2016, 04:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thanks for the input. I basically already anticipated the outcome before I had even gone. I was loosing faith in my LLMD big time and decided to give mainstream medicine another shot at helping me....that was a bust!
It was far worse than I could have anticipated!! I expected them to try to tell me I had Lupus or something and that this was no longer related to Lyme...what I wasn't prepared for was for him to look at me and tell me he thought I never had Lyme disease in the first place!! How could he say this when he was holding 2 completely CDC/IDSA positive Western Blots in his hands!!? They just "weren't strong positives" to him...
I will stay away from infectious disease doctors...lesson learned
Posts: 66 | From New York | Registered: Sep 2015
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