Posted by Elizabeth on August 10, 2001, at 15:19:12
In reply to I may need help...., posted by Adam on July 13, 2001, at 7:14:58
Hi Adam. I'm sorry to hear of your troubles.
I'm sure that a lot of people hear empathise about the way you've been treated by the doctors you've gone to asking for help. I got a taste of this a few months ago when I had an episode of respiratory distress syndrome coupled with pneumonia (probably iatrogenic, IMO). I was comatose, and they jumped to the conclusion that I'd attempted suicide by taking a drug overdose. The paramedics gave me Ativan and naloxone, so it's hardly surprising that I tested positive for benzodiazepines. (Plus I'd taken benzos the night before anyway.) The doctors at the hospital refused to do a quantitative toxicology workup to see if their overdose hypothesis was correct. Even when my family showed them the full bottle of the drug I had supposedly ODed on, they wouldn't let go of the assumption that the origin of the problem was psychiatric. (I will give them a bit of credit: once I woke up and they were able to extract the breathing tube, they listened to my account of what had happened and did appropriate diagnostic tests -- although no cause was ever determined and the black mark of the "drug overdose" diagnosis remained on my records.)
As you've seen, the medical profession seems to have this belief that psychiatric patients don't get "real" illnesses -- that if we present with symptoms of "physical" sickness, it's most likely psychosomatic (women with mental illnesses are probably subjected to this even more than men are). I think that we're less likely to get adequate diagnostic workups than non-mental-patients; I'd be interested to see any research on this subject. Your expression "diagnostic abuse" sums it up nicely.
I think the best way to deal with this type of prejudice is not to act like a stereotypical "mental patient" -- don't show any signs of panic, terror, anger, hysteria, etc., go out of your way to be cool and rational, make it clear that you're educated and that you expect to be treated as an equal by the doctor, etc. (but also try not to give the impression that you're obsessed, which some doctors may conclude if you seem to have done "too much" research). It's tricky. I suspect that in order to be taken seriously, you might have to show *less* fear than a "normal" (mentally healthy) person would display in the same situation.
One thing that might help is to find a doctor who is interested in Lyme disease specifically, perhaps someone who's done research on it. (I think there's been some research at NEMC, at least, and probably other centres in the area as well.) I would think that such a doctor would be a lot more open to considering the possibility of Lyme disease and would be more familiar with how this disease presents than the average internist would. (Oh, and going to McLean *really* isn't the answer!) Also, showing up with a diagnosis already in mind can contribute to the impression that you're obsessive or hypochondriacal; it might be best to see a doctor who specialises in the type of thing you're experiencing -- see if you can get a referral from your GP, who you say you trust.
Another thing that can improve doctor-patient communications is straightforwardness: state explicitly that you aren't a hypochdonriac, let them know that you've considered the possibility, and explain as clearly as possible why you've rejected it. This, combined with being sure not to *act* at all like a hypochondriac, might just convince them. (I've used a similar approach when discussing buprenorphine with a new doctor: I tell them that I'm not a drug addict, that I have considered the possibility, and why I believe it's not the case. I am also very open to letting them peruse my medical records, although I do tell them that I've often found major errors in these records. All pdocs, of course, claim to take medical records with a grain of salt.)
Hmm, reading further down, I discover that your test was negative. A question occurs to me: you mentioned that the test is unreliable; do you know if there tend to be a lot of false positives, false negatives, or both?
> I am becoming more convinced, as I read up, that my symptoms are consistent with Lyme disease.
I don't know too much about Lyme disease. My father had it long ago, before anyone knew what it was, and I have family in CT so I know several other people who've had it. (It's also fairly common in Princeton, where I lived for a couple of years when I was very young -- there are a lot of deer there and much of the land is covered with forsts.) I think that getting tested was a good idea. The prognosis has improved a lot since my dad had it, but as I'm sure you know, it can become very serious if left untreated. (Not that it's not serious anyway -- well, you know what I mean. < g >)
BTW, just for reference (to anyone reading who likes to go camping or hiking in the Northeast US): taking a shower within 24 hours after you spend time outside can prevent you from getting bitten (I guess that deer ticks are slow biters). Also, if you're in the northeast US, it's a good idea to wear boots and/or tuck your pant legs into your socks when you go hiking, cacmping, etc.
> The doctor was completely unaware of selegiline, and seemed only vaguely familiar with MAOIs.
That's typical for an internist; neurologists are most likely to know about selegiline. (I found it referred to as "sertraline" in one place in my records from when I was taking it.)
> Since my preliminary vitals all appear normal, he possiblility of prescribing me antibiotics never came up.
I think that's reasonable, actually. Antibiotics shouldn't be used unless there's a fair certainty that they're necessary.
> I'm not sure what to do. If I can't find a doctor who will treat me, what are my options?
Taking it into your own hands, I guess. Not terribly reassuring -- sorry. I do think you should be able to find a doctor who will treat you like a human being; you're in a location that's swarming with doctors, and there's a lot of medical research being done there.
> I certainly don't agree that I'm a hypochondriac, but it would seem my medical history has biases every physician I have met with so far towards that dx, vs. the assumption that my symptoms are legitimate.
The very idea of "illegitimate" symptoms is mind-boggling. It's too bad you're having trouble getting in touch with your psychiatrist, since it would probably be helpful if she could confirm to these other doctors that you're not a hypochondriac.
Re sleep problems: I assume you've probably tried some medications for this. Which ones, and did they help at all?
Re hypertension: (1) Is it possible that you're getting "white-coat hypertension?" (2) How long before getting it checked had you taken your last dose of selegiline? (3) Have you had your BP monitored over a long period of time (i.e., not just once, but every 15 or 30 minutes for a few hours)? (4) How old are you?
The BPs that you mentioned were borderline-high -- not high enough that they pose a serious risk, but high enough that something fishy might be going on. (A pulse of 90-100 is reasonable for a person on a MAOI.) I doubt that it's food-related.
Re pheochromocytoma: this is rather far-fetched. It can cause hypertensive crises, particularly in people taking MAOIs (it's an absolute contraindication for MAOI therapy). Sometimes the paroxysmal hypertension associated with pheochromocytoma manifests as panic attacks. I think that a urinary catecholamine level test would be indicated, but you would need to be off selegiline for that to be meaningful. Pseudopheochromocytoma is one description that I've seen for hypertensive episodes due to other causes (including MAOI interactions).
Re l-amphetamine and l-methamphetamine: I think this might be the most reasonable explanation of the ones that have been mentioned so far. I'm not terribly up on the metabolism of selegiline, but l-amphetamines are nasty and I do believe that the CYP2D family is involved there. Stopping the Benadryl and seeing if Neurontin works seems like it would be worthwhile.
> I have had my faith in medicine shaken before, but never this severly. I have never felt this clearly discriminated against, and it has come as a real shock.
Sadly, it's no shock to me. Doctors can be just as bigoted as the rest of the population.
I really hope you succeed in getting an accurate diagnosis and treatment. I also hope that you don't have too hard a time tapering off the selegiline. Please keep posting to let us know you're all right.
best wishes,
-elizabeth
poster:Elizabeth
thread:69963
URL: http://www.dr-bob.org/babble/20010809/msgs/74499.html