posted
We're gathering together my husband's medical records before his first appointment with his new LLMD next week. The first to arrive were from Mass General's Neurology Department. Even worse than I expected.
His former LLMD had been freaked out by his neurological symptoms, led R to believe these were unusual (they're not), started backing away from her Lyme diagnosis, and told him he should see a neurologist. (That's why she's now R's *former* LLMD)
I knew at the time that it was a big mistake to go back to Mass General, with its unhelpfulness and arrogance, but R didn't want to find a new specialist at a new hospital.
Rob mentioned that had been treated for Lyme disease, which was the beginning of the end. A student acolyte of the Big Neurologist sneered throughout the appointment and wrote a pretty nasty little report, which we've just got access to.
What's in there has no resemblance to what R said or to his tone during the appointment. It seems mainly to be an attempt to justify the conclusion of "mood disorder" by taking R's statements out of context and willfully misinterpreting them. He took every opportunity to make R sound emotional, irrational, and volatile. No-one who knows R would recognize him from this.
Big Neurologist himself added a paragraph at the end, and actually commented on R's clothes and appearance as "not in keeping with his profession." We hadn't realized there was a neurological patient fashion police.
R is not the suit and tie type, but always makes sure he's neatly dressed for doctors' appointments. He wore smart casual: evidently too casual for BN! Perhaps "Khaki Dockers Syndrome" is a new category of neurological illness.
The conclusions were: 1. No organic cause for R's neurological problems. 2. R is emotional and unbalanced. 3. Probable diagnosis of mood disorder.
I know I shouldn't be shocked. But the deliberate ill-intent is too much. Posts: 431 | From New England | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- His "former LLMD" was not really LL, after all, it seems. Not every doctor who says they treat or know about lyme is a true LLMD. It's an earned "title".
Deliberate ill intent occurs often in medical records for those who even whisper lyme in the IDSA medical centers (and every university hospital is IDSA connected, regarding lyme).
It is really hard to read that, to hear it or realize they not only get it so very wrong but they don't care - and don't care what harm their false statements cause to the patient then or for the future.
Good luck with the next step. Look to only those who are really ILADS educated and truly LL and TBD literate. And hope for the best from here on out. Many do go on to better experiences that lead to success. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Garbage like that has a way of eating you from the inside out. PLEASE don't let it. They are not only STUPID, they are cruel.
Do you know the difference between God and a doctor?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I feel your pain. Take solace in knowing that you know more than them.
I have been through so many drs. that I now have an attitude that 99% are not as bright as I need /want them to be
You may be aware or brighter than them. Shake the dust off your feet and keep going
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Thanks, everyone! We're moving on, as you say. Tincup, the med students were practically genuflecting when BN came in.
Lisa, my 17-yr-old students could probably write a better observation and description than this elite medical student and BN did.
Keebler, I have to agree about the former "LL"MD. She never treated R with anything except oral antibiotics. Never recommended a supplement except Chlorestyramine, when he had difficulty clearing the abx from his system.
And she never told us that R had a pretty weakened immune system--never told us about his very low lymph reading and SED rates. You'd have thought a supplement or two might be useful there.
She was actually a step UP from the previous "LLMD" we saw, who didn't even test for or treat coinfections.
And these two are regularly mentioned as the cream of LLMDs in Massachusetts!
But yes, onward and forward. Thanks for listening.
Posts: 431 | From New England | Registered: Dec 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
So sorry you had to deal with such invalidation and ignorance.
I hate reading my medical records anymore. It's just too upsetting. Even when you go to the ER with something life threatening, they try to make you sound like a nut in the notes.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
What that means is that the atmosphere in your state has been very corrupted by the IDSA and its buddies in high places. You know Steere is affiliated with that institution? Harvard/Mass Gen.
Maybe with the new law there will be a gradual improvement in how lyme docs feel they can treat there. But don't look for it in the bastions of groupthink.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yes, we're in the belly of the Steere/IDSA beast in Mass! MGH, Harvard, Tufts.
The new law about IV abx will certainly make a difference in the future. But I think the 2 "top LLMDs" in the state are set in their ways.
I totally understand needing to keep your head down to avoid potential lawsuits. But when we put her notes and test results together with our appointments with her, it also looks like she was trying to limit her work by limiting what she told us.
We often had to pull information out of her by doing our own homework. And for the first year, we didn't realize how necessary this homework was.
Now I think I have to recommend that people looking for an LLMD in MA go to a couple of neighboring states.
But the good news: Beth Daley, the journalist who created the Lyme series in the Boston Globe, seems to be on her way to becoming a Lyme advocate.
She's no Pam Weintraub yet. But she's writing better and better pieces, and they're highly visible. Between her influence and the new law, it should get better eventually.
Posts: 431 | From New England | Registered: Dec 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i pmed you. talk soon.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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