1st post/arthritis/rheumatologist nightmare

[zakksdaddy]

Hello all,



Been browsing the forums for a little while, and finally decided to jump on board. For my first post, this is probably a bit long-winded, but I'm really hoping for some feedback if you'll indulge me.



I'm a 36 yr old male, and since 18 have been a poster boy for the 'bad' American diet (ton of sugar, processed, pre-fab foods). I also never excercised and carried 30 or so pounds of extra weight around.



Early this summer, I went to a podiatrist because of sore feet that had been going on for about 8 months. After a 6 day steroid taper, and a month and a half of anti-inflammatory pills (prednasone, I believe), my body went completely crazy. The day I took the last pill, I woke in the night and felt like my entire body was on fire. Every joint was excruciatingly painful, and I couldn't even roll over, or muster the strength to pull a single thin bedsheet over me for warmth. Thinking I must have the flu, or something I waited about a week before going to see my regular doctor, who after testing for things like lyme disease, lupus, rheumatoid factor, etc, came up empty and suggested a trip to the rheumatology clinic. After waiting 3 agonizing months to get in at the end of September, the official diagnosis came back as psoriatic arthritis. I'm very nervous about drugs, so I was started on indomethacine, a more begnign (relatively speaking) drug. Over the course of a week and a half, I gradually felt better, but starting having heavy blood in my stools and awful headaches. After a trip to the emergency room ($500), and my rheumatologist telling me to stay off the indo for 1 month (and take nexium to repair my stomach - so I could START THE INDO AGAIN in 30 days), I spent a week coming off the medicine and feeling worse and worse each day, til by the end of the week, I was in agony again. He was also convinced that the bleeding was the result of an ulcer, and strong-armed me into to going to a gastroenterologist for an upper endoscopy ($1300), which of course came back negative.



At this point, out of sheer desparation, I started to investigate the diet/arthritis connection on my own (it was the first question I asked my rheumatologist after the diagnosis, and he shot it down as quickly as the words left my mouth). I began with a 2 day water fast, and was astounded at the improvement. With this alone, I was able to go from needing 4-6 advil to survive the day, to needing none whatsoever (although I was not completely pain free).



I still haven't hit my groove 100% with the diet yet (it's been almost 2 months to the day), and I'm not McDougalling (yet), but I've mostly been leaning towards macrobiotics, which seems to share many of the same ideas. What first drew me to McDougall, is that his work was the first place where psoriatic arthritis was mentioned specifically (even the Arthritis-specific materials and books I read rarely mention it by name).



Over the past 2 months, I have gradually felt better and better, and have gained back some lost flexibility recently. I've also dropped the extra weight, and have been doing light excersing (mostly walking, and pilates type stretching). I'm still working through the food-allergy thing (I'm pretty sure soy is one for me, and I'd been eating ALOT of it prior to my 'attack'), and really feel like I'm heading in the right direction.



Here's where things get weird....



Yesterday, I had my first follow-up with the rheumatologist, and while I was fully prepared for him not to be thrilled about my drug-free time away from him, I was not prepared for the verbal beating I was subjected to.



The doctor flipped out on me. Literally screamed at me for 15 minutes, and then stormed out of the office without saying 'good luck', 'good bye' or even, 'pay the receptionist on your way out". It was scary. I'm talking being alone in a room with someone who's got a screw loose type scary.



He kept calling me a "buddhist", and accusing me of challenging his 'religion'. He also said if I was a buddhist, then to go do it somewhere else and not waste his time. He said he refuses to be my doctor if I won't get back on drugs immediately.



I was absolutely numb when I left there. The worst part - he pretty much deflated me, and made me feel that all the work (and POSITIVE forward movement I've made since I saw him last) was a complete waste of time. In my heart I guess I don't believe that (based on how my body feels), but it was still like taking a boot to the stomach.



I didn't even get a chance to tell him what I'd been doing on my own, or how I was feeling, or anything. All he did was count my swollen joints ( 13, DOWN from 17 2 months ago), and look at my grip tests (normal at 300 each hand, UP from 250, and 140 in September), and then he used me for his verbal punching bag because the nurse wrote on my chart that I was off the drugs. He told me that in 2 years those grip tests weren't going to be like that, and my joints would all be swiss cheese.



He also told me last visit (2 months ago), that in 30 days I'd be BEGGING him to be back on the drugs - that was before I started exploring other avenues.



I'm seeing 2 naturopathic doctors next week for consultations to get their take. The brief conversations I had with them on the phone yesterday (along with the things I've read on websites like Dr. McDougall's) make me feel that I'm not completely crazy for listening to my body, and wanting to try something other than drugs.



Bottom line - I think my doctor sees these other ways of thinking as a challenge to his authority and a threat to his livelihood. I don't feel he had any right to treat me that way (especially when I said NOTHING to antagonize him - I pretty much stared at my shoes while he screamed).



If you've read this far, thanks for your time.



Advice????? Any similar experiences out there?



Scott

[Steve]

Zaks Dad,

There ae several "Star McDougallars" that reversed RA. Also some good articles under the hot topics section of the main page to this site. I copied a link to one of these below. It will explain the role of dairy in all of this, you might be surprised unless you have already read up on the subject. Please check out the Stars and the the hot topics. You have done very well. The doctor did not like being confronted with the weaknesses in his approach. You were probably not the first one who got better rejecting his pills. Just be carefull about trying different approaches. Some may not work. If they do not work (shudder) you might be in that quacks office begging for pills. One poster is having trouble with RA and McDougall, although that is the first I have heard of it. Here is the article. Congrats on your progress, now for the cure. http://drmcdougall.com/med_hot_arthritis_diet.html

[slugmom]

Oh my gosh, Zakksdaddy, that's AWFUL.

Even if you WERE crazy and been antagonistic, he has no right to scream at patients. I would write a letter to his superiors.

I don't have any medically related experience, but I had a pediatrician who treated me like I was stupid and over-reacted to my *questions* as if I was challenging his authority. So I know what that feels like. I got a new pediatrician.

Anyway, there is a lot of information about diet and arthritis, and you're far from crazy. In fact, the fact that you're seeing some improvement is grounds alone. Even if it doesn't help everyone, you need to do what helps YOU.

But I would strongly recommend letting someone know about this doctor, and finding a new one.


Kim

[serenity]

Wow, I'm sorry you had to deal with all that. But it sounds like you really are on the right path on regaining your health.

I would be tempted to report the doctor to the state board. That incident alone might not result in any action, but you may not be the only patient to have been subjected to such abuse, and other complaints might be on file.

I think that the consultation with the NDs will be a more positive experience. Just keep in mind that not all recommend a vegetarian diet and may also be opposed to it.

My own, less dramatic, experience is that you must be the one in charge of your health and any treatment decisions. I recently had some surgery that was primarily risk avoidance. So, the decision to do it was not clear cut. I took a year to decide - research, consult with Dr. McD, etc - and decided on only part of the procedure recommended by the doctor. The surgeon was not supportive during the decision making process and was downright rude and hostile to my questions. She briefly raised her voice and was very sarcastic. She clearly did not agree with my final decision; however, she was obligated to follow my directions. It was a very difficult process. Like most of us, I despise conflict. But in the end, I am very happy with the decision that I made (and by the way, once they got inside, I was proven right in my decision.) Had I been bullied into doing it her way, I have no doubt that I would have had big time regrets and life long side effects.

You already have subjective and objective proof of the rightness of your course. (You feel better and you tested better.) My experience is that some doctors will prophesy dire problems in the future, but truly they have no basis for those predictions, particularly in a patient who is not following the poor lifestyle habits of the majority of the population.

I say trust yourself, your intuition, and the capacity that your body has to heal.

[veggiecat]

story. Complain about that doctor; there is no excuse for such behavior.

[hope101]

Zakksdaddy: I was previously in health care and there is no excuse for his behaviour whatsoever. He was unprofessional, abusive and if you complained to your local licensing body they would censure him. Unquestioningly, you need another rheumatologist. Although you don't have rheumatoid arthritis, I would recommend you call or attend a local RA Society meeting to get a recommendation for a holistic rheumatologist. Go in to your first appointment essentially as an interview, to see if they will work cooperatively.

You are entitled to your beliefs as a patient, and he is entitled to his as a physician, but there are ways to discuss the differences in a respectful and meaninful way. Do not settle until you find a doctor that can work with you, even if they disagree with the route you are taking. They owe it to you to gently explain why they see it differently and what their concerns are, then keep the door open to change if you change your mind about medication. Good luck!

[Mrs. Doodlepunk]

Daddy of Zach, your story is so similar to my brother that it's scary. All except the part where you tried diet changes on your own, that is. My brother is going thru a similar ordeal but refuses to try McDougalling or any other diet related thing, he thinks I'm nuts. I've given him my tapes and books and talked to him but he just says that's interesting and changes the subject.

I think you're on the right track. Having had a doctor yell at me like that I know how it feels, and you have to keep remembering that it's just like you said, your actions attacked his expertise and that hits them hard.

You don't need to go back to the screamer, if you need one you can find another rheumatologist who understands.

Keep up the good work!

[Burgess]

You might consider my experiences with a variety of "-itis" problems:

www.aristotleadventure.com/anti-itis/

My understanding from a comment Dr. McDougall wrote somewhere is that there are different types of arthritis. Some may be responsive to a healthy (low fat, low protein) diet and others may not.

Your comment about soy is intriguing. My experiences with soy were awful. I have banned it totally from my diet -- along with all the other acid-producing foods I noted on the webpage above.

However, my experiences might not apply to anyone else but me.

[L]

Hi, Zak's Dad,
I called my doctor one time and he was away or booked up so his receptionist gave me an apointment with the nurse practitioner. She said my cholesterol and triglycerides were too high and wanted me to go on drugs. I told her no thank you and that I would prefer to use herbal medicine and diet change. She got angry. she didn't shout at me but voiced her negative opinion and wrote on my chart that I would not cooperate with treatment. I decided not to see her again. My doctor doesn't have a problem with me using alternative treatments.
I have been having trouble with my thumb joint on my left hand I'm left handed and it interferes with some of my work.I have also had muscle twitching. My mother and aunt had similar symptomss when they came down with ALS. It started about a month or two ago.
I cook for a big family that likes meat, cheese, eggs, and fish,
and fat along with healthy food. I have been trying to do a low fat vegan diet but truthfully have cheated a lot. I seriously want to change what I'm doing because of the wierd symptoms.

[L]

I also wanted to mention that I read in Jethro Kloss's book "Back to Eden" that there was a man who had bad rheumatism and was cured from fasting one day a week.

[Sher]

Mercy. That guy was definitely an egomaniac control freak! There is NOTHING that deserves that type of unprofessional reaction; he has some real issues, needs HELP. I agree, I would find somewhere to file a complaint --it may help someone else down the line.

In our grandparents time, you just accepted whatever advice someone with a degree advised, you had no other options. Now we are in the Information Age, with access to research, stats, and ideas from all over the world; and a few of the doctors don't like to be questioned or "challenged".

Please don't let this discourage you; rather than discontinue the health changes, I would discontinue the doctor, and find one more supportive. They ARE out there.

Sher

[Riva]

That was quite a story. I would suggest a letter to the medical board in your state. Even if he disagrees with your medical behavior he should NEVER verbally abuse you, call you names and in general be agressively mean. That is horrible. I would hope that, with some research, you can find a Dr. that will work with you. In Seattle we have a clinic called Seattle Healing ARts where Mds and alternative health care providers work together. Here's to your continued healing.
Riva

[stephanie]

When you mentioned that fasting helped you initially, that reminded me of Dr. Joel Fuhrman's book on fasting for improved health. (I can't remember the title.) As I haven't had any health conditions that required serious intervention, I've only skimmed over it, so I can't comment specifically on this approach. However, if you've had success in the past with fasting, it might be worth looking into further, if you haven't already.

Best wishes on your journey toward improved health!

Stephanie

[richardg]

some have heard my story but i will repeat for you.....
i have also been through much the same as you... at age 36 it all started with the sore feet.. so sore i could not run anymore and walking any distant was a painfull experience.... then into my hands and my index swollen and deformed... after that I finally go to the doctor and then to the rhemy.. and then the diagnosis of psoriatic arth...
so now the drugs....first sulphasalazine first low dose and then to maximum and still not helping...then we add methotrexate to the pot.. first low dose wich worked wonders..... for 12 months and the symtoms return ... then we go to maximum dose methotrexate and still not working...back to the rhemy and the next step is Enbrel as well as sulpha and methotrxate.....
Enbrel is very expensive at $1000/month....
so i go home with the prescription and wonder where will this all end....
I am on a Yahoo Psoriatic Arthrits chat room when somebody tips me to the Mcdougal 12 days to better health...
Get the book and say why not try it before my new med...
To put it simply by day 5 I was completly off my meds and feeling better than I had for years.
When I cheat I pay for it.....(Mcdougal revenge) all the symptoms come back...
When I follow the programam I feel great.
So great that last year I trained for a triathalon and was in great racing shape and only did not do the local race because of priorities with my children...
But this program works...
When I feel bad I go to my apple program....
I eat apples unitll my symptoms go away....Then back Mcdougaling...
Burgess has this arthritis program nailed...read up on his posts and you can not go wrong.
Keep your chin up ... follow the program and you will be rewarded with great health....
Rich

[hope101]

Wow, Rich! Are you a star McDouller? 'Cause if not, you should be.