Wow, I have managed to keep on schedule and get out a Waspish Wednesday post every week for three weeks! It’s so unlike me to be able to maintain a regular publishing schedule. Go, me!
This is another Lyme-related post in honor of Lyme Disease Awareness Month. This tells the oh-so-bittersweet story of how I was recently able to go back to one of the doctors who told me I didn’t have Lyme and say, in effect, “You were wrong!”
It also is kind of a sequel to my first Waspish Wednesday post, wherein I discussed a certain doctor whom I strongly dislike.
There are many reasons I dislike this doctor: That he has absolutely forbidden me access with my service dogs and failed to provide other reasonable accommodation in their place; that he thinks his office is MCS- and wheelchair-accessible, when it is neither; that he does not provide American Sign Language interpreters to Deaf patients who require them, despite the fact that it’s the law; that he is smarmy and pompous and condescending; that he once suggested my cognitive impairment (brain damage) which is well documented, was caused by “watching too much TV.” You get the idea.
However, perhaps his most egregious sin was the way he treated me when I was so severely ill with Lyme disease and coinfections that I was probably dying.
I’ve written about my Lyme story before, but in a nutshell, here’s what happened:
I was bitten by a tick, and a few weeks later developed classic signs of acute Lyme disease. I was put on antibiotics; I improved, but did not get better. Eventually, I got much, much worse, until I couldn’t speak or move my limbs, was in excruciating pain all the time, had dozens of other symptoms, and was unable to leave my bed. This doctor was supposedly a Lyme-literate physician (LLMD), which means that, unlike most doctors, he knew about coinfections and “believed in” chronic Lyme, etcetera.
I went to see him, with a friend interpreting for me (because, remember, he doesn’t pay for ASL interpreters), and he was so rattled by how sick I was that he could barely stand to be in the same room with me. He said, “I don’t know what this is, but it isn’t Lyme. Lyme can’t do this. You need to find a doctor who can diagnose and treat you, and then come back, and I can help you.”
Then he got me out of his office so fast, you’d have thought I was a pile of shit on fire.
He wasn’t the only “unhelpful” doctor I dealt with. Some doctors refused to see me at all, just because I had Lyme. Others said they didn’t know what was wrong, and/or thought I didn’t have Lyme because my tests were negative. Still others did believe I had Lyme but didn’t want to take on my case because I was so sick, they were afraid they couldn’t provide adequate care.
However, none of these other doctors advertised themselves as Lyme specialists, then told me I didn’t have Lyme because “Lyme can’t do this.” No other physician told me that after another doctor diagnosed and treated me, he could help me. (What was he planning to do for me, exactly? Sing “Kumbaya”?)
Now, three years later, I’ve been definitively diagnosed with Lyme disease, babesia, and bartonella, and have been on aggressive antibiotic and antiparasitic treatment. Most of the time, I can speak. Most of the time I can sit up, move my limbs, brush my own teeth, do limited walking inside my house, and all sorts of other things I couldn’t do when I was being refused treatment because “Lyme can’t do that.”
So, two weeks ago, I went to see this doctor because he’s the only specialist in this region for another condition I have, and I was told if I didn’t have an appointment, they’d withhold treatment.
I started our appointment by refreshing his memory about the state I was in when last I saw him. Then I said, “Remember how you said, ‘Lyme can’t cause this’? Well, it turns out that Lyme did cause that. I got tested again in October 2008, and I was positive for Lyme and babesia.”
He expressed moderate surprise and requested copies of the labwork. I knew he would do that. I hadn’t brought it. He asked me to fax them to him. I said I would, but I probably won’t.
He did not say, “Wow, I really blew it on that one. I’m so glad that after nine months of multiple infections digging deeper into your organs and central nervous system, you got treatment. I have learned my lesson and will treat severe Lyme cases much differently in the future.”
Not that I expected it.
A lot of other annoying things happened, which I won’t go into, and then he asked me who was treating me for Lyme. I told him, and he asked me to please pass along his kind regards, as he thinks very highly of my treating doctor.
“Yes,” I said. “I think Dr. ___ saved my life.”
Either he didn’t hear me say that or he pretended not to. I don’t know if he caught the implication that he essentially left me to die.
Then, he yanked the plug on the only treatment I’d been getting from him — the entire reason I schlepped my tired ass to his office after avoiding him for over three years — and I left.
I don’t know if anything I said penetrated his thick armor of smugness, but for the sake of the next Lyme patient who enters his office, I sure as hell hope so.
I don’t know why he’s unable to say a mea culpa. Maybe he has some sort of brain injury that interferes with his “guilt processing center.” If so, it’s probably caused by not watching enough TV.
– Sharon, the muse of Gadget (I got stung by a bee waiting outside his office because he wouldn’t let me in!), and Barnum, SDiT?
After Gadget 
Obviously his ego is so much larger than his brain. I detest doctors in general because of their attitudes. Thank goodness there are some that are decent…but for the most part UGH!
This Doc makes me furious! Someone needs to get him before a medical review board- maybe even yank his license. At the very least remove his Lyme Literacy notation so noone else has to go through the horror you have. I remember those scary times when I’d hang up the phone so scared I was going to lose you. Though I’m grateful for the improvement that removes that fear from my end for the most part, I just wish that this never happened- that it had been taken more seriously.
To have a Doc find out you did in fact have the very things he said you did not and have it never even phase him- it just makes me shudder
The fact that he denies access to interpreters, SDs, and is not MCS safe just adds to my despite for the man- a man I am glad I will NEVER meet myself.
I recently learned something interesting btw about a clinics accomodation for the deaf- evidently (and I think this is wrong) its up to the clinic how they accomodate not up to the deaf individual. Most places do ask the person how they can accomodate their communication needs, but unfortunately you got the rotten apple of the bunch!
I am concerned about the treatment he withdrew- is this going to cause you probs? can you get it anywhere else? file a complaint? etc
Big Hugs my friend
Bastard should defintiely lose his license. What a monster! Why do these people go into medicine anyway, they have no compassion.
In my state, if you request an interpreter, they are required to provide one.
Being “Lyme literate” is not an official certification or anything; it’s something Lyme patients pass along the grapevine, though he does list Lyme as one of his specialties on his website. However, there are only two remotely LLMDs in my region, and the other one is just as problematic, but for different reasons. That’s why I have to go out of my region.
I think I’ll be OK without the issue I was consulting him about, although I just got some bummer test results from his office.
Well, whatever. Moving on….
Not really to defend him, but I think some doctors are trained not to say “I’m sorry” because they think it opens them up for a lawsuit. It’s funny because I remember reading a magazine article that said doctors could actually avoid some lawsuits if they just would say they were sorry.
If you ever have the energy for it: that is a gross violation of Title III of the ADA and you should file a complaint. Service dogs not being allowed, not wheelchair-accessible, no interpreter for ASL: all big no-nos. Here’s a link to the FAQ about filing a complaint–you can do it via email, mail, phone, TTY or direct video link with a staff member who uses ASL. That doctor deserves an investigation. http://www.ada.gov/fact_on_complaint.htm (Disclaimer: I’m not a lawyer, but I am a law student who took a course on disability discrimination law taught by high-ranked members of the Department of Justice! Your description sounds almost exactly like fact patterns/scenarios we discussed in class.)
Hi Meredith,
I am well aware of my rights, having been a disability information and referral specialist before I became disabled myself, and then doing lots of DR activism in the intervening 16 years. I also had a best friend who went through law school and specialized in disability and Deaf rights.
Why I didn’t file suit is complicated. I did actually look into filing suit, which he knew. He consulted a lawyer friend of his who works in public interest law and told him that, in terms of the service dog issue, because he is an allergist (among other things), and is protecting the health and safety of allergy patients, that as long as he provided me other reasonable accommodations, he was covered. If he hadn’t publicly humiliated me by escorting me out of his office WITH two of his staff (because, what? I was a terrorist threat and he needed backup?), while yelling at me, I would not have taken it so hard.
However, then, he and his staff never did provide any of the accommodations they said they would, and in fact, they had a habit of doing things like, when I went to the door and rang the bell that says, “Ring for assistance,” and has the wheelchair symbol next to it, they would wave me around to go to another door, which meant MORE walking, and another heavy door, so they didn’t really GET access.
The problem is, in terms of the SD issue, he is the only doctor in our region (four counties) who treats MCS, and who tries to have an MCS-accessible office. And a lot of people with MCS are allergic to dogs (including me, although I have a hypoallergenic breed, and only a mild allergy), so people in the MCS community pretty much pleaded with me not to take him to court because there are already so many bad precedents of MCS not being seen as a real disability in court (including in my state), that I felt I could not risk it becoming an issue of MCS rights vs. SD rights (even though that’s a red herring, in my opinion; but that’s how the doctor framed it). The courts are not at all trustworthy WRT MCS rights.
In terms of WC access, he is theoretically WC accessible. His bathroom is, for example. He has HP parking and a ramp (now — didn’t used to), and they have a bell for the door, it’s just that you can’t get them to actually come help you. But he would snake his way out of that one.
The ASL interpreters is a clear, blatant violation that he does not have any wiggle room for. However, I am hearing, and I only need terps for about 2-3 years when my voice didn’t work most of the time. Now it does work most of the time. Other docs, hospitals, etc., provided me with terps; I went thru the state commission for D/HH to set it up, but it’s not exactly textbook. I knew he didn’t provide terps because a Deaf friend of mine wanted to see him, and he told him he wouldn’t pay for the terp. My friend didn’t want to deal with the hassle of suing him, and that’s his right.
There’s also just that I’m really sick a lot, and I don’t feel like using my energy on this guy, and that I thought I still needed him for health care, because there are certain services only he provides.
The irony is that he is the most liability-conscious, paranoid doctor I’ve ever dealt with. He has all sorts of rules about what you can or can’t do because of liability, which I have never dealt with with any doctor before. Yet, he clearly feels he’s above the law when it comes to disability rights.
I should clarify that when he first kicked me out because of my 1st SD, I was walking, but still had fatigue issues and pushing an oxygen cart, which is why I needed help with the door. I think the fact that I was standing contributed to the staff thinking I was just a PITA instead of a disabled person requiring assistance. Now I’m a full-time pchair user, and they act more accommodating because I “look” disabled. ::eye roll::
Meredith,
An addendum. After I posted that reply I realized the first paragraph sounded snarky, which was not at all my intent. I appreciate your support of the issues and your interest in passing on resources. I was just trying to provide background for the situation. While many PWDs are not aware of all of their rights in these situations, I am, but for the reasons I outlined, I decided not to pursue it. I am, however, very grateful when PWDs do take people to court over ADA violations, because that often seems to be the only way to get some individuals and corporations to change.