I was intercepted by a nosy doctor at the hospital last week. He heard the word "Lyme" and went into a tizzy, couldn't get his IDSA talking points out fast enough.
He knew nothing about me or what treatments I've had or who my doctor is. He immediately started in with "Lyme patients are incredibly misinformed" and "there's no evidence antibiotics help Lyme patients" and "There's so many lies being told about Lyme".
He really crossed the line when he admitted he never heard of my LLMD, but in his own words..."Some people will do anything for money". No joke, that's what he said.
So to sum things up.....I'm stupid and my LLMD is a crook.
I'm writing a letter to the hospital to express my dismay at his rampant ignorance and unprofessionalism (is that a real word?).
Not his ignorance about Lyme, we already know doctors curl up in the fetal position at the mention of the word, but in his verbal assault knowing nothing about me.
I'll also send a copy of the non-sensical IDSA guidelines for treatment of Lyme. If ID had followed them I might not be out on disability. But they didn't. I won't mention ILADS, I'll get labeled a heretic and be told to see a psychiatrist. Ironically it was a psychiatrist who sent me to my LLMD.
I want to recommend they hire a high school tutor to explain them to him. He'll still be "incredibly misinformed" but maybe he'll think twice about going after a patient. It's a chapter book with lots of big words. Forty seven pages might be a bit much for such a brilliant genius so the tutor would be appropriate.
I did baffle him for a second. He got that confused look when I mentioned Babesia and Bartonella. Those are in the IDSA Book of Misdirection too.
He's not even my doctor, just an arrogant bastard.
/end of rant.
Sorry. This has been simmering since last Friday. Had to let it out. It really sucks when neurologic issues prevent me from speaking up for myself, stress shuts me down. Writing (and typing) is the only way I can truly express myself now.
I'm not one to hold back. Under normal circumstances I would have gone toe to toe with him. I was chomping at the bit to spew his precious IDSA guidelines, but his posturing was like a blender in my brain.
They're flawed but do cite several studies indicating IV abx help patients who don't respond to oral abx, and call for IV abx for Lyme and Babesia. I wanted to see him squirm trying to explain those away. I'm getting a PICC tomorrow, maybe I'll send him a picture of that too. Not going back to that hospital (it was in Mass).
I find it amazing that the medical community worships the IDSA yet refuses to follow their own guidelines, much less acknowledging the work of thousands of ILADS professionals who actually treat us. How may patients would be helped if IDSA guidelines were followed and IV abx started when needed, not years later? What they're doing is unethical and immmoral.
Yeah, IDSA guidelines suck, I only bring them up to highlight doctors are afraid to even follow their own propaganda, they're hypocrites.
I find it even more amazing this IDSA panel of "experts in their field" haven't made a single discovery or changed treatment guidelines in 12 years. Corruption aside, at its root level wreaks of incompetence. But we already know big $$$ is involved.
One more question....Allen "Ducky" Steere headed the Lyme Disease Clinic at Mass General Hospital. If Lyme is such a simple disease easily cured with a few pills...why build a specialized clinic? Especially when their research "supposedly" yields nothing?
OK, /end of rant that followed my /end of rant. I want my life back. That is all.
posted
Doesn't that violate HIPPA laws? If he is not your doctor, how can he legally comment on your treatment/condition?
What is wrong with people? To say stuff like that is just mean.
Geeze. I hope your letter rattles some cages.
Posts: 331 | From West Coast | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Southpaw, I felt my blood boil as I read your post. Good for you for writing a letter to the hospital! That MD needs to be reprimanded.
My own PCP that I had for many years is also in the 'other camp' and I did not have the energy or clear thinking to zap her right back when she turned my visit into a debating match.
Instead, I found a lyme friendly doctor and had my records transferred. This disease is just the worst - between dealing with the prolonged symptoms with everyone being affected differently, the herxing and lack of community support.
Hope your Picc line helps. Good luck!
Posts: 2387 | From New England | Registered: Aug 2011
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poppy
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posted
"He admitted he never heard of my doctor."
This statement worries me. You didn't give him a name did you? Hope not. Even out of state doctors have caused LLMDs problems. No end to their ignorance and destructiveness.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looks like you did tell him the name of your LLMD as you said:
". . . he admitted he never heard of my LLMD" (end quote).
Did you get the name of the doctor who interrupted your hospital visit? Hope so. That's really important.
If you did not get the name, perhaps you could innocently call the hospital and ask who else was on duty at that time as one doctor had given you some detail and you just wondered who that had been.
Call your LLMD to advise.
It would be good if you could contact your LLMDs office manager and inform them of the situation and who it is who now has their name. It will allow them a "head's up" would could be vital to the LLMD being able to anticipate repercussions from this in advance. Just in case.
Because the doctor at the hospital was so adamant, my guess is that he will report the LLMD. I would bet on that. It's happened before and then, before long, another LLMD has to close their practice.
But - if the LLMD is advised of this today, they may be able to prepare for fallout, although it could cost them tens of thousands to defend himself.
Have you see the documentary UNDER OUR SKIN?
If not, it's really important to see that now - to put my cautions in context. It's a very real threat. I'm sure your LLMD will be understanding that their name was shared - but also very appreciative of a head's up about this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- "Ironically it was a psychiatrist who sent me to my LLMD." (end quote)
If you shared the psychiatrist's name, you might also want to give them a head's up. They will likely be called on the carpet for that and told to never do it again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- debilyn wonders:
"Doesn't that violate HIPPA laws? If he is not your doctor, how can he legally comment on your treatment/condition?" (end quote)
HIPPA is about them sharing your information. If I am talking in a hospital and am overheard, that is MY own self putting out my information, sharing with all who are in ear shot.
The interrupting doctor shared no patient detail with anyone else but just offered his professional opinion - and he may have been a supervisor of the treating doctor so that would have been within the interrupter's bounds, even duty (as they see it).
It would be his "job" to enhance "patient education" where he sees or hears the perceived "need".
Even if the interrupter was not the treating doctor's direct supervisor, if he had a certain other position on staff, it could be within his bounds to "confer" with other doctors as he see the "need" -
- it's just too bad they are so very wrong about lyme. Yet, for as wrong as this all is, and it's too bad that now the LLMD is at much greater risk - it's important to know the true thought process at that hospital.
You can bet your boots that all doctors there are ordered to discount lyme. Lesson learned.
And it doesn't stop at the hospital doors. The professional group that runs the hospital has doctors on board all over the city. They likely agree on their lyme stance for all staff.
I've had similar experiences happen at several hospital ERs - and that is why I vow to never go back, no matter what. Ever.
I'll do my own first aid or die in peace if it comes to that. Never again will I step foot into any of those hospitals
as long as they continue to dismiss the severity of lyme and TBD because they would not know how to treat other things if lyme & co. were at all involved - and lyme changes so much about a body.
But I also have to avoid the horrible level of noise at hospitals, so there is just no other option these days, anyway. And I've learned how to manage a lot of things that I might have otherwise sought medical advice. I'm better off for learning how to best take care of myself. -
[ 09-04-2012, 02:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Forgot to say: sorry this happened to you. So sorry. It is not the way it should be, of course.
See UNDER OUR SKIN for perspective. It's available at Hulu.com -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
What a kind gentleman to step in and try to save you from your own stupidity.
NOT!
Totally patronizing. I'd be fuming.
Is it enough that we can't get appropriate medical care? We have to listen to the arrogant and demeaning medico-babble, as well?!!
Doctors are so delicate. Their egos simply can't handle that fact that patients could actually be literate and well-informed. I think they should get therapy.
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Yeah, next time don't blow the whistle on your own doctor!
If/when you write to the hospital be sure you have this clown's name - and STRESS that he disparaged your treatment protocol without even knowing what it was, or who was your treating physician - but ALLEGED to give you "medical advice" in an extremely disparaging manner!
That should be enough to get his sorry hiney in plenty of hot water.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- But, rather than this interrupter getting into trouble, he will get a MEDAL. They WANT "lyme spies" and probably train them to keep their ears open. Seriously. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
you know little woman that our female brains just cannot comprehend all this
Remember I'm fat fifty and female as one doctor said and that's my problem..
I'm beginning to hate them all
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Randibear,
While I'm not defending any doctor who insults patients, (and if told that was your "problem" certainly does sound insulting).
Still, I wonder if that "fat, fifty and female" might have been about an inflamed gallbladder?
My doctor said that combination is very typical for gallbladder problems but, in no way, did it come out as an insult (for he is a kind man, even if not lyme literate. He'd never put anyone down).
He just stated the fact of that matter. Women have more trouble with gallbladders than men, it seems. Excess adipose tissue and age factor in as well.
Since gallbladders popped up here, though, I think I've kept my very happy with good foods and key herbs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A few more details to clear things up. My little rant was turning into a book so tried to focus on the unprofessional behavior of my uninvited "guest" and not on the details of my appt.
I was at the hospital to get a PICC. Small regional hospital in Mass, the PICC nurses bounce around from site to site. I already checked in with the intake nurses and was waiting for the PICC nurse to arrive from another site.
My LLMD had submitted the PICC order with dx codes for Lyme. I didn't blow the whistle on my LLMD, she's the one who submitted the order. Her name and contact info was on the order.
I didn't mention my psychiatrist, I wasn't giving him any extra ammo to keep pushing his opinion. I see a psychiatrist because as many here have experienced, my long-standing neurological problems were blamed on a "bad brain".
The nurses had the order and somehow the doctor thought it was his business to confront an unknown patient. He claimed he called my doctor but she didn't answer. HE LIED. We called her right there to tell her what happened. She was mad, told me to leave.
She got him on a private call (I didn't get to hear it) but when he came back had a much more somber tone, urging me to see ID. I told him I already made that mistake.
He then made some sort of pathetic attempt at reconciliation saying he'd make sure we didn't get charged a copay. Yeah....once again open mouth, insert foot. I don't have copays, don't try to do me any favors. (high deductible health plan, met my deductible months ago).
He claimed it was "his" hospital. I looked him up, been a doctor for 6 years. Hardly in a position to claim he owns anything but a ton of debt.
BC/BS had already approved the PICC and confirmed Babs/Bart means IV treatment not limited to 28 days.
Work already put me out on short-term disability, approved by my LLMD and cleared through our insurance company.
This guy stuck his nose where it didn't belong. I'm not his patient and my treatments were already cleared through BC/BS which hasn't flinched at any of my meds. It wasn't his decision to make.
I got my PICC today in NH. My LLMD is out of Mass, that's why I was there last week.
Hope that clears things up. My original post was focused on his unprofessional behavior and defensive posturing.
My arm is sore.......but the deed is done and I'm on my way.....
Posts: 99 | From Cali | Registered: Dec 2011
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poppy
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posted
Thanks for the backstory. Sounds like you did everything you should have, and that guy was really out of line. Makes you wonder if he does that with patients there for other reasons, or saves his rants for poor sick lymed people.
Posts: 2888 | From USA | Registered: Mar 2004
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AuntyLynn
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Member # 35938
posted
OK thanks for clearing that up.
Apparently your LLMD put that self-proclaimed demi-god in his place!
Glad to hear you have your PICC and are good to go!
Sending best wishes for your complete recovery, Southpaw!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Best of luck to you SP! Get your treatment and don't let jerks ruin your disposition or discourage you from getting what you need.
I've been there, with docs yelling about lyme and it's treatment. I always tell them there is no reason to yell at me. I am the patient and did not prescribe the antibiotics. I was prescribed them by a licensed physician. Again, no reason to yell at me.
I've been yelled at by neurologist, stomach doc, pcp's, among others. It's not a fun experience, and yes I too rage on the inside, which is no good for our condition either. It's very hard to control yourself when being attacked for being sick..Geez!
I am about to go to 3 different specialists, and do another sleep study my pcp ordered, so if I get by these appt.'s with no yelling it will be a miracle. I dare not mention lyme to any of them.
Even my pcp, after hearing my long list of complaints, said that I should lose weight and lots of my issues would resolve or at least improve. I don't doubt that but I can't lose weight, not when the symptoms are active..it's pointless. I will try though. Also, she said, "everyone has pain and as you get older you just have to live with it"...DUH! I told her that I was WELL aware of that fact.
My God, if you tell them everything that's been going on with you they treat you like a hypochondriac, but if you don't tell them, then they bring it up later with, "why didn't you tell me.....".. ARGH!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Doctors who behave this way are not good at their jobs.
Twicebitten, I was yelled out of two doc offices and treated like dirt in several others. Being sick I just crawled out and licked my wounds.
Now if this should ever happen again, I will tell them off. Explain sweetly that this is not professional behavior on their parts, that good doctors do not behave this way, and suggest that they get some training in how to behave with sick people. Tell them that you have not asked for their opinion on lyme treatment because they are not qualified in this field. And now, doctor, can you do what I came here for?
Can put this on a flash card to take with you to give you backbone and a reminder when you are hit with inappropriate and stupid remarks from a doctor.
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm sorry you went through this.
but again, i say no doctor has the right to verbally abuse the patient. i don't care whether they think i'm fat, white, or what..
i don't appreciate a doctor asking me if i'm stupid, understand english, am in denial or making comments such as "why should i treat you if you're going to die anyway?"
they should not approach, call, or interfere with any treatment from another doctor unless they are a consult and fully aware of the doctor's plans.
i've left a couple of offices in tears because of the verbal abuse.
we need to put these guys in their place. they are not gods.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I did not want anyone to get the wrong idea by what the duck said (your subject line).... let me know if my change of your topic is OK with you.
I first thought I had was that you were blasting your LLMD!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Southpaw, I don't post much, just read here a lot.
So sorry with everything you went through.
I didn't know whether to laugh or cry at your post. You DO have a way with words.
Power to you, after all you have been through, to stand up to that bully doctor. How DARE he verbally assault you! Our Lyme docs are persecuted for saving lives while ID docs walk through the halls of Hopkins & other hospitals preaching their "truth" while refusing to consider, CONSIDER, that LLMD's and their science could be helping!
I know folks who are sent home from our most respected hospitals after consulting with ID docs, TO DIE, because said doctors do NOT believe long term Lyme can be that devastating or that antibiotics can help and are safe.
But hey, just got a year's supply of antibiotics for my teenagers acne. Where's the harm in that right? No suggestions for pro-biotics either!
Opps, sorry SP, this was your rant!! You GO!!!
Nevergiveup...., bow
Posts: 21 | From Maryland | Registered: Feb 2009
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It takes me forever to find the rights words, but writing seems to work. But it takes FOREVER to get it right, my mind has gotten so slow.
I watched Under Our Skin several times......I bought it. I also went to a screening at our local library. Eye opening movie.
I've tried to stay objective to the "Lyme debate" which is why I read IDSA guidelines. I took lots of notes cause my memory is so skewed but can easily go back to my notebook for Cliff Notes. I still reread them to make sure I understood properly.....comprehension has been a struggle too.
We have to be our own advocates. Thank God my wife has taken up that role cause I'm so diminished. She's had 27 surgeries over the last 34 years so is a great inspiration, and an amazing soure of support.
Thank you all.
Posts: 99 | From Cali | Registered: Dec 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Southpaw -
I am very optimistic for you right now, because my Mom has neuro Lyme, and IMHO, every success story and study I have seen in the past couple of years, points to IV abx as the best solution. (But most don't even start to feel improvement until at least 4 mos. of treatment!)
Physicians once believed that the brain could not regenerate damaged tissue - now scientists know better. I have read several posts from folks on the Mass. Yahoo Lyme group, of such patients who said they had "white lesions" on their MRIs and CATs, which all mostly disappeared, post-treatment.
Moreover, the addition of Fish Oil/Cod Liver Oil, or Virgin Coconut Oil supplies essential fatty acids that the brain uses to regenerate damaged myelin sheath. People also use Tumeric/curcumin to diminish inflammation, which offers noticeable improvement for some... even before abx treatment.
Dr. Terry Wahls, an MS patient undertook a search of the latest findings on brain degeneration, and designed a diet for herself that boosts the action of cellular mitochondria ... the action of mitochondrial DNA creates the fuel to power every cell.
The diet Dr. Wahls devised is much like the Paleolithic diet, organic meats and fish, nuts, sea vegetables, sulfur containing vegetables, and multicolored fruits, veg, berries.
B vitmains and CoenzymeQ 10 (CoQ10) are pivotal she says, to rebuild the myelin sheath that covers every neuron. Antioxidants help to prevent cellular damage. (Vits. C, E, etc.)
Bread and sweets are only included after maximum requirements of all other nutrients are met for the day. With this diet, she rose out of her wheelchair within four months. I think you will find her video fascinating.
posted
Thanks AuntyLynn. I'll watch the video, I've been reading more and more about what to eat/not eat lately. Old habits die hard, I really miss my coffee in the morning
Started reading "Beating Lyme" by Constance Bean tonight. Nineteen years ago the author went to the same hospital I went to last week. Didn't work out so well for her either. Different doctor, same script.
Thanks again, I'll check out the video.
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