I’ve been going to an Integrative Doctor’s office off and on in my town since 2005. They’ve been pretty clueless about how to help me but I keep going back because it’s the only place I can get certain sorts of unusual blood work done that standard traditional docs won’t do. This time I went to them to get a blood test that would test my detoxification enzymes. Specific enzymes that detox environmental toxins, pharmaceuticals etc. I had consulted with one of my friend’s colleagues in San Francisco and he recommended a bunch of tests including a test for heavy metal toxicity and once again an adrenal gland test which I already know is low from the last time I took it.
Adrenal functioning tends to get even worse over the course of a benzo withdrawal so it makes sense to look at them again. Currently to treat the adrenal fatigue I take two adaptogens–Ashwaganda and Eleuthero.
From the very beginning these docs at this practice have wanted me to take Cortisol, a natural steroid, to pump up my adrenals. Way early on, before I knew what I was doing, I looked at the side effect profile and said NO–it was a gut feeling. Since then I’ve studied my circumstance in depth and consulted with numerous people all over the country and I now have tons of anecdotal evidence that taking Cortisol in my condition is downright dangerous. I’ve been telling them this for about 3 years now.
So when I was talking to this guy a couple of weeks ago I got excited because it sounded like we had a plan and I was going to test for these detoxing enzymes and then if my detoxification issues were okay I’d do the heavy metal chelation challenge to finally rule-out heavy metal toxicity. The thing is a chelation challenge can be dangerous if you’re not detoxing appropriately so I wanted the detox test first. We agreed too, that I would once again look at my adrenal function.
At this point I said to the doc, “Dr. J—you need to promise me you will never bring up Cortisol again. I won’t take it, it’s dangerous for me and I don’t appreciate your not respecting that in the past.” He said very lightly and clearly, “No problem, there are other natural things you can do.” I said, “Yes, actually, I’d like to do licorice extract, actually as my blood pressure is so low, it might help with that too.”
I felt relieved. He had promised me he wouldn’t bring it up again because every doc in that practice has been trying to force it on me and they get sort of hostile and controlling about it.
Anyway. He called a week later after their staff meeting. God knows what happened in the staff meeting, but low and behold he started telling me I NEEDED to take the Cortisol!!!
I said to him, “Dr. J you promised me you wouldn’t do this.” I was mildly agitated in tone. He said, “Well, if you want to feel better right away you need to take it.”
I said, “Dr. J, it’s not realistic for me that I would feel better right away.”
He said, “Well when I was sick like you I needed to take Cortisol just to be able to go to work everyday.”
I said, (getting a bit agitated) “Dr. J, I don’t believe you’ve been sick like me.”
He said, “No, really when I was sick like you I needed to take it.”
I finally lost it and raised my voice and said, “Dr. J, you have never been sick like me! I’ve been on neurotoxins for 20 years!”
He promptly said, “I’m not taking your abuse.” And he hung up.
Just in case you wonder. I KNOW he has NEVER been on psych meds because he doesn’t know jack shit about them. So I know he cannot compare whatever illness he had to mine.
In any case I wrote the following letter to him which he will receive tomorrow.
Dear Dr. J,
You can call it abuse if you like that I got angry at you after telling you explicitly numerous times that I will not take Cortisol or you can look at yourself and see why you are hell bent on telling me what I should do when I’ve told you I won’t do it.
Your experience is NOT like mine. I was on neurotoxins at astronomical doses for 20 years.
I’m sure you’ve suffered too and I don’t question that, but you cannot compare our experiences.
I am very very sick today. I’m in horrible physical pain. I’m shaking and weak.
I got mad at you. It may not have been the best behavior in the world but I felt once again ignored and dismissed. My experience spit on.
I simply ask that you respect my decisions. I’ve done excessive amounts of research about my condition and know many other people who suffer with it. You do not. I’m begging you to trust me because I need help but if I have to pretend to do what you suggest when I know it’s dangerous for me just to get along with you then we can’t work together.
I am housebound. I’ve needed home care. I need help. No one knows what to do with me but I need someone who has ideas and I have listened to yours and agreed on the tests you suggested…I need you to listen to me too. We have to be partners. I won’t be a submissive patient.
If you don’t want to deal with that, fine. But if you respect me, I’ll respect you…but if you push things on me I don’t want then, no, I won’t stand for it and I didn’t.
that is what got me here in the first place—trusting doctors implicitly.
I won’t do it again.
Gianna
this is not the end of the post:
So, once again, I have no doctor. Every doctor who practices medicine in a way I will consider still feels a need to control what I do with my body. Just like a typical psychiatrist. It’s infuriating.
The two docs who treat me with the greatest respect are, oddly enough, my traditional psychiatrist who allows me to dictate how I need to slowly and safely withdraw. He profoundly respects me even if he doesn’t actually know how to help guide me.
And my general practitioner too, who practices ordinary medicine has helped me get home care and has believed all my symptoms and never called me crazy or even given a hint that he doubts me, but again has no tools in his toolbox to help me.
So both of them really don’t know how to help me. They simply TRUST me.
Instead the docs with the specialty knowledge have such huge egos they think they know how to fix me when in point of fact they’ve never even worked with anyone like me. And they will admit it. They know no one whose been on the psych meds like me. So why do they pretend to know how to treat me with such great confidence?? Their egos are astounding. And I’ve been fucked over by numerous “alternative, integrative, orthomolecular” docs now. The thing is if I find one willing to partner with me and trust me like my regular doctors we might actually be able to put our heads together and accomplish something. But these guys aren’t willing to trust me.
Just to make something clear—I have no issue with my Jungian therapist, my acupuncturist or my neurofeedback guy. Nor do I have issues with my traditional docs, psychiatrist and general practitioner. I’ve known all these people for years now. The only people I have problems with are the ones who think they know the answers to my problems. And they don’t. Because no one does and unless someone is willing to be frank about that I’m not willing to work with them. I’ve talked to the foremost experts in the country on psychotropic drug detox and the people who know the most admit they know nothing.
So now I don’t know what I’ll do. I want some testing done.
I am getting an MRI done through my general practitioner. I’m so grossly disabled it’s hard to believe it’s just the psych meds. I see so many people doing okay when they come off of them. I know I’ve been on longer and more drugs then most, but I’ve met many others who have too and are doing okay.
I’m mentally sound but physically in horrible shape. So I’ll do the MRI and see if this Integrative doc has the guts to reply to my letter. I’m not sure I’m willing to work with him at all anymore in any case.
Tonight I’m doing another Klonopin taper. I still gotta just keep on going.
Update:
This guy called me on my cell YESTERDAY. Luckily I recognized the number and did not pick up.
He actually had the nerve to thank me for my apology and then went on to tell me what he thought we should do next. No admission of inappropriate behavior on his part whatsoever!!
It’s been 2 1/2 weeks and he reads this as an apology??? WTF???
What’s even stranger is I sent this post and another on the seriousness of my condition to his office email for the whole office to be alerted…I did not name the “doctor” in the office email…I simply said, “This is my experience of your office.”
bizarre shit, man.
I finally made the switch from the general practioners that got me into this drug nightmare in the first place. I selected an ND in my neighborhood, thinking that I would get support & info in my quest to get free of drugs. But, this guy is prettry insecure about not being a “real” docotor. He doesn’t know the first thing about detox, believes the neurotransmitter imabalance theory and thinks I’m a crackpot for saying that the PDR is not a good place to go for drug withdrawal info.
The only benefit is that he’s not allowed to prescribe most drugs. It hurts that he gets that drugs for most “physical” problems are a bad idea, but somehow psych drugs are in a different category. The propaganda that the brain is distinct and separate from the body has permeated the culture.
Selene thanks for your support.
doctorblue,
welcome…..I’m thinking of reaching out to the chronically ill community because it’s becoming pretty clear that I am indeed chronically ill and the chances of my recovering are a big question mark.
and yesterday in a phone conversation I was told by the foremost authority and journalist covering this subject (psychiatric drug toxicity and physical impairment) that there are so few people with my history of huge drug cocktails that even try to come off of the drugs and he’s interviewing those that do and it’s not very pretty…it’s like maybe I’ve got a 50 – 50 chance of having some quality of life that others would recognize as a quality of life…
that being said, I WILL have quality of life even if I remain bed bound.
it may be too late for me though to recover physically…and I don’t say that with pessimism..just realism…I do everything I can to heal in the way of food, nutrients, and meditation etc…so I’m in no means giving up.
my optimism says I’ll learn to live with whatever limitations I have as I am even now…helping people choose to get off drugs before the long-term permanent damage is done…BEFORE they end up like me crippled with iatrogenic illness (treatment or drug induced illness)
and again this is info I get from the person who has done the most in depth studies out there…I am working with him right now and he has asked not to use his name publicly…
I think I will do a post on this…I feel really sick right now…
and Selene, back to you…while I may be mentally “fine” in terms of showing no psychiatric illness…when one is profoundly physically ill they hardly feel good mentally much of the time…
so no, I show no psychiatric problems but I struggle with despair as I deal with the distinct chance that I may never be able to take care of myself again.
Losing ones autonomy comes with a deep horrible mourning process.
Gianna,
I read your story with great empathy since I’m enduring the same sort of doctor-patient disconnect that seems inherent in U.S. health care. I’ve been disabled for five years now – unable to work – because of meds conventional doctors prescribed over the years as well as their failure to detect a systemic debilitating bacterial infection. If you’re interested, my blogs about my experiences with doctors are at http://doctorblue.wordpress.com. It helps me to know that I am not alone in the fight for survival. I’m having difficulty coming to grips with why it is this way with doctors. It defies logic.
Gianna,
I’ve experienced the very same thing with so many doctors … being discounted and dismissed. In all cases, in retrospect, it turned out my initial gut feeling as well as what I knew to be true were correct. It’s frustrating and (for me) infuriating.
Yes, drs have their own pet illnesses or illness du jour, many times based on what conference they last attended.
I noticed you are now starting to question whether or not this could all be withdrawal and that maybe you need an MRI to find another cause for your symptoms. I just wanted to say that, yes, a lot of people do fine once they’re off them. But others can have a long journey back to health. And you are still withdrawing from the Klonopin.
It takes time to heal, is what I’m saying. If you’re mentally fine at this point, you’re doing well. The physical stuff will likely improve as you recover from all you’ve gone through up to now.
Hugs
S
kick him into touch! what a jerk! He should realise that the violence and force used in psychiatric “treatment” has left many traumatised. Bullying patients, however well meaning, is insensitive and grossly disrespectful.
You’re your own best doc, Gianna! It was you who got yourself to where you are now, out of that deep dark hole that arrogant medics had thrown you into, and back on the path of true recovery!
Hi Gianna, best of luck with the klonopin taper. I know that they are difficult for you. I am sending positive reinforcement your way.
You are right to be cautious with the alternative practitioners. I saw a “natural” doctor once who was very arrogant and recommend cupping. I should have listened to my instincts and bolted when I realized how uncomfortable he was with me. Instead I allowed him to treat me. Cupping involves heated glass “cups” that are placed on your back, which creates a suction, and are then moved back and forth across the skin. My skin immediately bruised and got burned by his carelessness. He didn’t apologize but did stop when I complained. It took over six weeks for my skin to heal. I left feeling violated, which ironically was one of my issues that I discussed with him. Never again will I blindly trust any kind of doctor.
yeah, it’s awesome when they listen and all the other professionals I’m dealing with now do listen…that’s why I can’t figure out what it is about these particular sorts of specialists…and why I haven’t managed to find one who listens…
my trad psych and trad gen doc are listeners…why can’t I find an alternative doc who listens?? I’ve seriously gone through like 5 of them in the last 2 1/2 years. And some of them have been famous and some ordinary…
so I don’t get it. I think about the fact that I’m the common denominator…but then why all the good relationships with other docs and professionals???
I don’t know…
I’ve had experience too of doctors with egos. My psychiatrist was pretty well always condescending, and I don’t see him anymore. The other day I went for acupuncture, and I told the acupuncturist something about how something or other felt, and he actually listened to me as if he believed me – it felt absolutely wonderful to be taken seriously. I don’t remember the issue, but to have that experience of someone believing you and taking what you say seriously is so healing. It’s like gold. And doctors who can’t do that aren’t healers, IMO. They should be able to create a partnership with their patient / client, and most can’t. What do they do to them in med school anyway?
Good for you for standing up for you.
Wow babe – I am grieved beyond words that you are having such a tough time!
I can only hope that Dr J will respond in a respectful manner… I honestly don’t understand these MD’s who have to mount themselves on a pedestal, “lording it over” their poor unruly “subjects”…
Dear Susan!
I knew you would get it in this particularly sensitive way.
Did you see my spring pictures?? (new post) I thought of you more than anyone when I posted them. As I aspire to photograph as well…and I know you’re getting into gardening…
both things I’m not really physically well enough to do, but I do my best to enjoy what I can manage!
thank you very much.
love to you too.
Dear Gianna,
I’m so sorry. I can’t imagine how disappointing this must be for you on so many levels. Given the amount of research you do, and the amount of time you spend seeking wellness, it’s just awful that you have to work so hard, only to be ignored.
Having experienced so much of the same “crap,” I know how debilitating it feels to have your doctor respond in this manner. Not only doesn’t he know what it’s like to be on psych meds and try to get off them, but he clearly has no idea what it’s like to have to fight with your so-called healers every step of the way.
I always felt that if my doctors had researched my case at all–and had truly listened to me–that I wouldn’t have had to experience all the pain and suffering. Sadly, all I learned was to distrust them.
If your doctor felt/feels you need to be on Cortisol and you don’t, it should have been a one-time conversation, and he could have noted that in your chart (for liability purposes). If the reason he’s bringing it up again is for liability issues or because his colleagues have recommended it, he should have said, “I just need to explain that when I discussed your case with my colleagues, they strongly recommended Cortisol, but knowing how you feel (or showing them the research you uncovered), I told them it wasn’t a consideration, and we discussed other options, which are…”
Sadly, I agree it’s an ego issue rather than a medical one. And I know how alone you must feel. I just wanted to let you know I’m in your corner, and only wish you could find a doctor who is as well!
With love,
Susan
It’s sad to hear you are having these problems with your doctor, but you sound like you have a very strong voice and I do admire that,
Louise x
This proves, once again, that most doctors are not looking for partners, but for subjects. Stand your ground!
hey to all the rest of you…I want you to know your comments of support mean sooo much to me…
I have such limited energy I don’t respond to everyone individually unless it prompts me to clarify something or elucidate further or add more info or if someone asks a question, I always try to answer. So I appreciate you all so much but please understand I’m taxed.
BUT you guys help me keep going!! KNOW THAT!
I meant to say ND…not MD…it’s corrected now…but if you go it in your email…you won’t know what I’m saying….in any case he’s an alternative doc with a traditional license, who has additional training in integrative medicine and alternative medicine…he SHOULD know something about pharmaceuticals.
this guy is not an ND but and alternative doc with traditional medical training…though I’ve had the same problem with NDs and nutritionist etc…
Like the ND who was telling you it was an abcess…they all seem to have their “pet” diseases and problems that they like to throw at you without even checking.
Whenever I meet a new practitioner I have to tell them all the things I’ve already CURED because they’re sure I have a problem with Candida, for example…well I’ve been on an anti-candida diet for years and my bowels are perfect…but as soon as I say “fatigue” for example…out pops their favorite diagnosis!!
it’s ludicrous.
pet diagnosis and treatments are NOT thinking outside the box and all these alternative care docs think because they aren’t practicing traditional medicine they are by definition thinking outside the box…the thing is they’ve put themselves in another box is all.
Those who inhabit their own bodies (as opposed to those who don’t and passively accept the judgement assigned by ‘Dr.’s’) are the best ‘experts’; a good Dr. will fully agree on that point, and will also communicate their limits without the need to stroke his/her ego.
The letter to your naturopath is great wake up call to someone practicing in a so called holistic approach, which by all accounts, is supposed to include the ‘client’ in partnership. Yet, I find that these ‘partnerships’ often end up in the same authoritarian relationship that the vast majority of medical Dr.’s like to perpetuate.
Once, I was complaining about an earache in public to a friend and I happened to be in proximity to a N.D. This N.D. said, “You probably have an abscess in your mouth.”
I had just gone to the dentist and got a clean bill of health and said, “No, it’s just an earache.”
She continued to harp on her lickity split diagnosis of an abcess. (This if course was w/o even LOOKING inside my mouth. This of course was based on her esoteric knowledge system which was superior to my experience of just…an ear ache.)
In light of that example, I can only imagine the frustration of trying to explain pmed experience to an N.D. I had thought about doing the same thing, trying one out just for the heck of it, but will just stick with my pdoc who also trusts me and gives me the respect I deserve.
Good for you for sticking up for yourself.
That sounds hair-pullingly frustrating. I hope your very well-written letter is able to penetrate his granite-like skull matter and sink in his grey matter.
This really reminds me of what I go through with Nattie, our daughter with autism. We have been through so many docs. Today in fact I went to see one, a naturopath, I was afraid it might be the last visit. I had to press a couple of times but finally he heard me and I’m willing to do it his way for at least the next 30 days. Funny, it was also about chelation, and wanting to proceed very cautiously.
You’re smart enough to understand your own test results, plus the labs often have docs that will go over them with you. If your gen prac will order them, I say go for it.
Hang in,
Sue
I’m going to a Naturopathic Dr. but he can be pushy sometimes too. I take DHEA and without it I wouldn’t be able to function. I have to take care of my Mom.
But I had to take back two supplements today to the pharmacy/supplements thingy – one was for Cholesterol and the other was for inflammation. But it seems that I always felt crappy on them. So I left them with the lady and she said they’d have to review it to see if I’d get a refund – even though I’m within the 90 day return policy AND I’ve bot LOTS of supplements … rather frustrating for me.
There’s a test that the N.D. does on level of Adrenal in my blood.
Also, the Glutathione that I’m getting cleans out heavy metals and I they haven’t done any heavy metal testing on me prior to that. But there most likely were heavy metals in me b’c of fillings and growing up in Alaska – I remember something about trying to melt lead once … picking up a mercury thermometer that burst open – a couple times actually.
Anyway, I hope that things go well with your dr.
🙂
I’m so sorry you’re going through all of this and I’m glad you stood your ground with Dr. J.