posted
I'm sure it has happened to everyone on this board:
You've got a specific medical problem (ostensibly not Lyme-related), so you go see a specialist - the chance is he's not Lyme Literate.
Of course, he inquires about your medical history and asks for list of medications.
You're careful about not saying the word "Lyme" because it's so stigmatized. You use "Neuroborreliosis" and give a list of your current medications.
And then, suddenly, the doctor looks up, assumes this very blas� air and tells you something like "How do you know you have Lyme? Who diagnosed it?"
Granted, sometimes it might be genuine concern. Most of the times, however, they have this all-knowing smile... you know the smile I'm talking about. The one that seems to say: "You are not only a hypochondriac, you are a gullible one at that, and your LLMD is a quack."
You've prepared yourself for this moment (because you know from experience that it happens EVERY SINGLE TIME). You even spent 1/2 hour in the waiting room rehearsing in your head what you would answer, something like ``With all due respect, sir, my LLMD is not diagnosing or treating XXX. That's your job. So please refrain from assuming you know more than he does about Lyme and leave that to him''.
But when it happens and you're in front of the arrogant duck, you feel so small. Suddenly, he bombards you with a list of questions and you can't remember for the life of you when was your last brain MRI or the list of medications you've been taking in the past years and in what order. You wish so bad that you had written down your long list of medical problems, just so that he would believe you. It's not only frustrating; it's demeaning.
Why do we ALWAYS have to justify ourselves? Isn't it enough that we spent years trying to figure out what was wrong? Isn't it enough that we are having only bad days or worse days? Isn't it enough that our friends, family and co-workers think we're losing it? Do we also have to FEAR every visit to a doctor who's not a LLMD?
Posts: 159 | From CT, USA | Registered: Jan 2005
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
yes, it has happened many times and each time I react the way you do, wanting to say it's not your concern, but ending up trying to explain and then, in some cases, defend the lyme treatment.
it truly is one of more objectionable aspects of the disease. on the rare ocassion when another practitioner does understand, you feel so good!
We just have to slow and steadily take back our power and trust ourselves a little more..
Easier said than done.
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
posted
I've gotten to the point where I don't. I name the coinfections instead. But recently my children's ped told me there was no reason to treat babesia unless you have a compromised spleen and then it could be fatal. So how often do you run bloodwork to check the functionality of a person's spleen? hmmmmm? My child has gone to this ped since birth and only had a blood lead run. If thats the premise that a dr. would base babesia treatment on then he would need to check the condition of the spleen. BTW - I'm not saying that his reasoning or his treatment plan are valid, they aren't. He doesn't test for lymes, coinfections or spleen condition.
Hiv + people take mepron & ketek and in my state are given it for free and their prognosis is very grim, some how I bet they don't have to answer all the dumb questions either.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well stated, Christelleny!
When I see another non-Lyme doctor, I usually come "loaded for bear." However, I've found them more and more receptive to hearing from a well-informed and educated patient than I would've thought possible.
Most of us here on this Board know more about Lyme disease, sadly, than our non-LLMD doctors.
I like to tell new doctors the thumbnail story of my neuro-duck, who refused to dx me with Lyme, despite classic symptoms..history of EM rash, brain MRI with 11 frontal lobe lesions, horrible hyperacusis, fatigue, and excruciating headaches. However, because my ELISA was negative, he refused to do a western blot. I ignored him, found an LLMD, and had six strongly positive bands. I name this duck to any new doctor I'm talking to. A few have even shook their heads in wonderment. I find this is a good clue to their 'Lyme disposition.'
Arm yourself with a copy of the "Persistence" collection next time you have a visit with a naysayer. It's about 12 pages of peer reviewed scientific evidence of the ability of borrelia to persist in spite of long term antibiotics.
Ask this duck (if he's so smart) how would he propose treatment for cystic form borrelia? He will of course have no idea what you're talking about as conservative ducks really don't have a plan for that...a few weeks of low dose Doxy cures all. (When in fact that won't bust cysts at all.)
An acceptable response also would be, "Clearly Lyme disease is not your specialty area or you would know more about it. Can we just stick to your specialty area today?"
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I like your response, Michelle. Think it would be good to write this on a little card and have it handy as a reminder. When faced with these ignorant supercilious twits, it is sometimes hard to think of the correct response in a timely way.
Really don't want to go to any more non-lyme specialists. Was recently told to go to a neuro, which I did, thinking it would be help for changing the treatment, since muscle wasting was occurring with current treatment. This was a doc on referral list of a PCP who has lyme, so I assumed he would not be a jerk about it. Wrong. Plus he charged my ins co $300 for ten minutes and was mad that I wouldn't do all his painful, invasive, and useless testing. Wonder if there is a positive correlation between greed and ignorance? This guy did not care at all about my situation or treatment, he was only interested in running up the bill.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I've only seen one duck specialist since testing Lyme positive and starting abx.
This was a doctor I'd seen for routine gyn appointments for the past 15 years. He was among those who, prior to my Lyme testing, had me biopsied for anomalies that had turned up in one of my blood tests.
I was ready to go head-on with this doctor but was met with only deep concern about my health now and regret that it took so long for all this to come to light.
He did have quite a few questions for me, all of which I answered as honestly as I could. He said he was really grateful to have someone he could call if he had any Lyme-related questions or needed any more information.
He and I talked about the fact that Lyme really has gotten a bad rap among physicians. But he was quick to add that he's known ducks with Lyme...and all of the ones he's known have been on long-term IV abx.
Guess you've gotta be a duck to manage that!
I also keep expecting skepticism from other people I know...but around this area, almost everyone knows someone with some stage of Lyme.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
posted
What bothers me right now is Lyme Illiterate office staff in the office of my LLMD.
"You need a refill of a- an a-a-a-antibiotic? !!"
I wonder, do I sound whiny?
Apparent Rules of Conduct: Don't phone when you're not doing very well. Don't phone when you're having trouble snail-in away through converstation. Don't phone when we're busy. Don't phone AGAIN. Don't phone back when we cut you off too soon. Don't "uh um mm".
Picture a Graemiln praying for patience here. +
But my REAL concerns are listed below.
[ 07. November 2005, 06:21 PM: Message edited by: cecy ]
Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
| IP: Logged |
posted
What Christelleny talks about hasn't happened to me yet. I'm in a little cocoon right now. Diagnosed with Lyme last year by a LLMD in Family Practice, I also have me CFS/CFIDS/FM doc who doesn't think I have Lyme but she's treating CFS/CFIDS/FM, and that's fine. She handles most of my meds and my LLMD my antibiotics. I still have my primary care MD (my internist) who has been through this with me since 1999 and always believed in my credibility, probably because my dad's been a prominent OB-GYN here until he retired.
But HE's close to retirement, so I'm basking in my bubble for a time. You've given me an idea of what to expect and how to deal with it when it happens. I DID have someone say that about my asthma, though. "Who diagnosed it?" That was part of a bizarre "abberation caused by circumstances, miscommunication, medication" that I don't want to talk about online. Yet. I was amazed, though, at the ignorance and prejudice that is to be found still.
Amazed? Or should I have expected it? What do you think? Hope for the best, prepare for the worst? I'm not scared, no, of course not ; just looking at a dark cloud on the horizon.
(P.S. Andie, your post was witty. Question for everyone: Does "duck" cover "quacks" only? Does this mean one who is an ostrich, don't-bother-me-with-the-facts-my-mind's-made-up doctor where Lyme is concerned? Is there an alternative term for "an open-minded, as-yet Lyme-illiterate but prime-for-learning" doctor?)
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bow]](graemlins/bow.gif)
+ 
![[spinning smile]](graemlins/spinsmile.gif)
Diagnosed with Lyme last year by a LLMD in Family Practice, I also have me CFS/CFIDS/FM doc who doesn't think I have Lyme but she's treating CFS/CFIDS/FM, and that's fine. She handles most of my meds and my LLMD my antibiotics. I still have my primary care MD (my internist) who has been through this with me since 1999 and always believed in my credibility, probably because my dad's been a prominent OB-GYN here until he retired. ![[rant]](graemlins/rant.gif)
I was amazed, though, at the ignorance and prejudice that is to be found still. ![[Eek!]](eek.gif)
; just looking at a dark cloud on the horizon. ![[Frown]](frown.gif)
Printer-friendly view of this topic