Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group misinformation

Hi, I stumbled across the website today & am amazed at the amount of information here.
I was suprised at the amount of stuff about diet - all the healthcare profesionals I've asked have said that diet had nothing to do with AS at all. In fact, my diagnoses (5 years ago(after visiting many doctors over the previous 5 years with extreme back pain)) went something along the lines of "you've got AS, we don't know what causes it, it may or may not go away. Take some Ibuprofen, do these exercises & come back every year & we'll measure you to see how much movement you've lost.

Given that they were clueless about diet, is there anything else that's glaringly obvious that it would be useful to know?

Pete.

Welcome, Pete:

Yeah, there are still more obvious things to know about the misinformation that leads to mistreatment. Glaringly, all NSAIDs cause intestinal damage that allows AS to get much worse much faster. The great thing about NSAIDs is that they allow you to ignore the damage that is continuing; now enough below your pain radar. NSAIDs used to cause 44,000 deaths from spontaneous bleeding ulcers every year, but that is just the tip of the iceberg: The number of people with severe intestinal compromise is probably ten times this.

I suppose that I am grateful to have learned this the hard way--before the more severe sequelae that doctors certainly would have blamed upon AS but in truth are caused or at least accelerated and exacerbated by the drugs. As I was about to return to those doctors for more drugs to counteract the effects of drugs, I had a reverse road to Damascus vision--after which I was no longer blind.

The older drugs Indocin, Clinoril, and Voltaren damaged me to the extent that my kyphosis (easily measured from back of head to wall with heels against same) increased from zero to 10 inches in five years during which I also lost more than half again that amount in actual height (and I was not tall to start with). I did the exercises and was, further, quite active daily lifting weights, swimming, and very often playing racquetball, skiing, and SCUBA diving. The NSAIDs metabolized out too quickly as my physical exertion increased, so they switched me to MTX and steroids. These have severe AS--promoting qualities, also.

The very brilliant doctor who finally diagnosed me (I only waited 7 years--not much compared with some others...), told me that diet has nothing to do with AS!! By then, I was well aware that this was untrue, but it took another 21 years before I found out what I had suspected all along: SOMBODY, somewhere, had already figured this disease out. Since it was NIH (Not Invented Here), and, moreover, discovered in a country that has a socialized medical system, AMA doctors will continue to ignore the EVEREST of data they dismiss as 'anecdotal.' Well, I am finally an anecdote, too. Although I had met several people with AS, I made an extra effort to meet someone who became an ex-sufferer and knew exactly what to do to achieve this condition (ESR > 100 before and < 7 latest check).

You may have already looked over the AS Dietary Primer https://www.kickas.org/as_dietary_primer.shtml, and I hope that you can join us in the NSD forum https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch.

Glad you have found us and I wish you all the best,
John

Hi-

This has also been my experience with doctors when I was finally diagnosed....take this pill (piroxicam) for the rest of your life and exercise. This from the top rheumy at a top hospital in the NYC area. He didn't even want to monitor me for any changes the drug might cause. When I came for a second visit 3-4 months later, I presented him with a list of vitamins, herbs, and other alternatives I had read up on that were shown to help stop joint inflamation, and I asked him if there could be any bad interactions between piroxicam and the alternatives. He said, "well, if you tell me that you're having problems, reactions, side effects, etc., I'm going to tell you it's the alternatives causing it". I later found out some bad news about piroxicam and internal bleeding, and I stopped taking it, as I already had eaten Advil like candy for years.

I got a new rheumy, she knew my old one, and her big thing to push was Celebrex, although she gave me Vioxx samples she had, as she said Celebrex didn't give samples but Vioxx did. She said Vioxx was tolerated by men better than women, although Celebrex could cause women's ankles to swell. She didn't monitor my blood, she wanted me on Arava or MTX, I would not do the MTX, too toxic. Since the Vioxx knocked out the pain she blew off contacting my insurance company about the Arava, a DMARD, but I only found out when I went for another visit months later. I had done my part to fill out forms and talk to people. I then went over my list of alternatives with her. I had stopped the Vioxx after six months as my PCP doc's blood tests showed raised liver enzymes. My rheumy didn't bat an eye, had no comment on Flax Oil, SAMe, MSM, Glucosamine Sulfate, SOD....she agreed to blood test me, said she could have the results in a week (her staff laughed at that as the machine was broken), and months later I was tracking her down, finally to hear that my blood tests were ok.

I take the Vioxx only in emergencies for pain, along with Flexeril, but have been taking my alternatives all along. Have been in and out of a flare in the past month, but am wary of a return visit to the rheumy, and besides, I have the drugs they would give me.

Now that Vioxx has been shown to be not much better than an average NSAID in relation to stomach damage, and that aseptic menengitis has been reported forcing Merck to put that on the warning label, I am more sceptical than ever about new drugs from the big drug companies. They are in business for profit, and arthritis drugs are HUGE.

Granted, there are many 'snake oil' rememdies on the market, but when I read enough good things about a natural product over several years, I give it a shot. More and more, diet is shown to play a role in many of our diseases of the past 200 years or so, and I try my hardest to stay on a low to no starch diet, and I notice a difference if I can keep it up for a month or two.

Well, enough rambling, must go read posts and hit the sack, hope this was helpful.

Peace
Linc

Linc O'Brien

John -

Not a challenge, just a question k?

If your theory that AMA discredits the NSD because it was conceived of in a land of socialized medical care is true, why is it that Canadian docs also consider Erbinger's work to be antedotal?

Jeanna

'I would have cried and laughed less while watching
TV and more while watching life - EB'

Jeanna:

The AMA is in closer proximity to their Canadian counterparts, who might fear the long armed slap. Well, the REAL answer is probably that it is easier to give a pill than monitor a diet. Many of Ebringer's patients had ESRs that did not follow the expected slope. Eventually he would learn that they were not quite following things exactly ("...dad eats a potato for dinner every night; says it is just not a meal without it."--father ratted out by son, also with AS), but when lumped together these really brought the average down.

And, I'm not exactly sure that so many Canadian doctors consider Ebringer's work merely anecdotal, as there are many there who have now at least heard of his work, opposed to the steady ignorance of US docs.

Best Regards,
John

Hi Pete,
Welcome to this site. Something else besides the diet? Well there is a lot of experience out here (and a lot of tips for relief) but the diet is the only "cure" which each of us can try out for himself. Luckily there is a strong scientific basis for it (although there are other theories to explain the disease) so it is not some kind of goofy alternative thing. These things combined explain the relative success for the diet here. Ohh and not to forget of course the people who have success with the diet.

I myself started some weeks ago and though I can't do without my medicines I'm feeling remarkably well. If it's a placebo effect it's a very good placebo. If you would give it a try: make sure you read a lot on this site and the NSD forum and try to figure everything out before starting.
Succes on kick AS
Gerard

I've read that a lot of people here use and believe in the no startch diet. I tried it, I also tried other vitamin and detoxification ect. For ME and I stress for ME (I know others get true relief) its hocus pocus. I use Indocine and darvocet. I usually have to go off the meds for a couple months if they stop working but have had AS since about 1983 and bin taking the same meds being switched back an forth sometimes by doct wanting to try new drugs but the best for me is the combo I gave. Right now they arnt working too good and might have to go off for a while. Maybe you can try the NSD and other things to see if they work for you. I just thought as a friend I should put in my two cents worth. Good luck and read everything you can and gleen out what is helpful for you.

We talked to the rheumy last visit about Kate trying the NSD. Doc said there is a certain percentage of people it WILL work for, but not for everybody. And there is no way to know but to try. she recommended food stores where we might find variety without starch.

Kate has not yet made the decision to try it. I think at 18 she is not ready to give up so much for an uncertain outcome -- as though the outcome with the meds isn't undertain!

Sandi

It's a dog's life!

I wish I didn't have to take any drugs. The human body probably has a reaction both good and bad for every drug you give it. Its a journey of risk most of the time, take something that may help you and it may bite you in the long run. You are right about the drug companies making huge profits off these newer EXPENSIVE drugs---I wonder if the doctors get a cut of the action.

I'm not sure if I'm missing something here; a lot of people are talking about THE NSD DIET. Is this a specific diet, or is it just making sure that you eat no starch?
Also, would it be fair to say that drugs minimise the pain, rather than treat the condition? I've not had any decent drugs off the doctor, but I have tried strong opiate painkillers & they certainly stopped the pain.