Lynne,

i am always ready to learn about what works and what doesn't work for an individual. I would appreciate it if you post about what you find to be inflammatory.

Thanks, Nancy

i'm sorry that you feel that you (and others) have to defend their journey. each of our journeys are different.

it's widely been accepted that people are sensitive to different things - of course it's expected that some of us may have food sensitivities that trigger inflammation. speaking as someone who does not believe in true diet-induced RA remission at this time, and speaking only for myself, i think the issue is not that i am offended but that i'm worried that other newcomers to this disease will think there is a 'cure' and spend time on that without working with a doctor or monitoring disease progression.

my spirituality poses me as both a student and a teacher. in the teacher role, i feel it is my duty to educate others and offer alternative ideas. for me, that is why i often post on threads that talk about 'diet-induced remission' - i feel a responsibility to remind people that there are other options and the importance of working with a rheumatologist.

all of the literature i have found that i consider scholarly and reputable point to diet helping ease some symptoms of rheumatoid arthritis, but not inducing remission. i have read studies that show a correlation between food allergies and transient synovitis, i have read case studies of people who were mistakenly dx'd with RA when it was really a serious allergy, and i have read one study where 1 out of 15 people on a peptide diet went into remission (that kind of number only shows a possible correlation between food allergies and inflammation/RA; it is not causal).

and, for me, that's the issue i have when people post something to a new member like, 'all you need to do is cut THIS, THIS, and/or THIS out of your diet and your RA will go away!'. that's why i post what i do. i hope you find a reduction in symptoms with diet - it works for some people. just not for me ;)

My opinion is that tracking one's progress with any treatment is okay, people saying or insinuating it is the be all and end all,like there's superiority in what they're doing and pushing it is not okay. To me the posts you're referring to aren't necessarily negative but realistic, and reminders have been needed that its not for everyone and to use good decision making. With a progressive disease like this spending more time with ineffective treatment is harmful.
Your post mentions your Dr. has A patient that achieved success this way, one story amongst how many patients in the practice.Just something to keep in mind.
I've gone the whole natural, mind/body gamut and the RA came on full force anyway.
Ros recently posted a link to a group that follows your approach in case you haven't caught up with the new posts yet.

At the beginning of RA it's only normal to want to give all natural remedies a try. Even people with cancer or any disease, wants to try diet or something natural.
I would try it for 6 months, but if no improvement, I would get on RA meds. I have done the trying natural for a whole summer, I felt cured but in month three, my RA got so bad I had to get on a bio, and mtx. my knees went bone to bone because my RA progessed so fast in just a couple of months.
But it's fine to try natural ways first. What if eating certain foods helped, I believe it can in some people. I wish I had more will power to stick to a better diet, I know I would feel better if I did. Not cured but feel better. I've been eating very bad lately.

Lin

I'm always interested in how people approach this disease. I am interested in what you find works for you. It doesn't necessarily mean that I will try it, too, but I am interested and don't find it offensive, at all. I guess it is all in how it is presented. We all know that what works for one of us, may not work for the next. MTX worked wonderfully for me...at first. Now it's a combo of MTX and Humira. Others couldn't tolerate even a small dose of MTX, It's such a individual thing.

Bottom line, please feel free to share. Your idea of titling it in a way that those who don't want to hear about it, can easily avoid it, is probably a good way to go.

Lynne, I think the real problems comes from, to use the word in the title of Sally's post people being "judgemental". I have never felt that you are judgemental about what you or others are choosing.

In the past few months we have had a couple of people get just plain ugly about the fact that they have found the one true path, denigrating anyone who dared to disagree or question them. We also have folks show up fairly regularly trying to sell all sorts of big-bucks snake oil and woo. Very little tolerance for this behavior! There's also no tolerance towards anyone telling anyone else to discontinue medication and go natural. Again, Lynne, I've never seen you do this, but others have done it.

Personally, I have had chronic pain problems for over 25 years. Early on I tried a lot of natural, alternative, complementary, whatever term you like, treatments. None of them did much other than empty my wallet. I currently have joint damage and some deformity. I'm firmly in the show-me-the-science camp now, and see my best hope as the drugs available now and in the future. It worries me deeply to see people fear the treatment more than they fear the disease itself.

The whole natural medicine industry is huge, just as money-hungry as big pharma, and for the most part unregulated. Frankly, it scares me silly. (Pisses me off, too. I live in an area where natural is so, so in. I am not in the least interested in homeopathy, past life therapy, or $75/half-gallon magical salt water. Or kale.)

Diseases come and go, sometimes with no rhyme or reason. We each have to find a way to treat serious illness that fits with our beliefs and pocketbooks. The more we can all respect others' choices, the better. There is no moral high ground here. I'm not a better person for using drugs, you're not better because you are trying diet. OK??

I think clear titles on ALL posts is a great idea.

Thank you all so much for your input. A few points:

1. I believe it is essential that an RA patient works with a rheumatologist. I would never, ever advocate using nutrition (or any other modality) without having a rheumatologist for RA - or say that nutrition is the be-all or end-all. As a Certified Health Coach, our most basic principle is bio-individuality. There is no "one diet fits all." These differences come from our genes, our ethnicity, our age, our history and more.

2. I will absolutely go on RA meds if my rheumatologist recommends it. She is going to monitor closely and has told me that, if she sees any progression, she will be prescribing. I fully intend to follow her recommendations.

3. I would never say anyone "should" try this plan. I have mentioned that it's out there, and that my rheumy recommended it after I told her I wanted to attempt to control inflammation with nutrition first. Like I said, she was delighted.

4. About the one patient who has had no progression: She is one of only a few who would even consider trying nutrition, besides being the only one who has followed through with The Plan. It's not an easy course. Most people go to the doctor wanting a prescription, thinking there is a "magic pill." It's the way we were raised. It's also how doctors are taught. They are not taught to use food as medicine. Just as RA presents and progresses differently in each patient, so is our body chemistry all different. What is inflammatory/allergic for me may not be for you.

5. About food allergies: The reason they are recognized as allergies is because they produce inflammation in our body, so we're talking about the same thing.

Steph, you made a great comment about newcomers to RA and to this board. I'm one, myself. :) I will be sure to iterate in my post that this is the way I am trying to take - with my rheumatologist's blessing. I have already cured myself of one autoimmune disease, dyshidrotic eczema. It was sheer serendipity. A few years ago, I was on the South Beach diet to lose weight. After 5 months, I realized those intensely itchy blisters on my hands and the soles of my feet were completely gone! When I got to Phase 3 of SB, I was able to add back grains. Kaboom! Back came the blisters. I stopped with the grains. I have challenged myself twice since and the same thing happened. I no longer eat grains now because no pasta, barley, rice, etc., tastes as good as being without those miserable blisters feels. For me, it's a simple choice. I fully understand that for others, it's not. If they're going to hurt, they're going to eat what they want even if it means hurting a little more. In fact, my husband is one of those guys! :) I have no problem with that.

By the way, I have a friend who cured herself from her very serious psoriasis in the 70's with nutrition. She learned that the antibiotics and growth hormone fed to livestock can cause autoimmune disease in some individuals, so she became vegetarian using the book Laurel's Kitchen in order to do it wisely and to be sure she was still getting complete proteins into her system. Today, she eats pastured, grass-fed beef from a local farmer who does not use these hormones and antibiotics and has no psoriasis. She also eats Amish chicken (free range and not supplemented with Monsanto corn), again without a return of her symptoms. So, it can be done. As a CHC, I really want to be able to keep my disease from progressing with nutrition - if at all possible. I realize it may not be possible. I will be responsible.

This thread has also reminded me that folks are getting diagnosed at all different ages, and that their courses are vastly different in terms of progression. Some forms of RA are very aggressive. Some are diagnosed very young. I am 61. I don't know at this point if my RA is aggressive. A ninth-grader posted today. I will do my very best to keep this in mind. I will also title my post so that those who simply don't want to hear about it can just slide on by. :)

Again, I thank you all for your thoughtful responses. This group really rocks! Blessings to all!

PS to Lin (DreamChaser),

There is a health coach out there who cured herself of a rare and incurable cancer with nutrition - very radical nutrition including coffee enemas (gack!!). Her name is Kris Carr (her website is CrazySexyCancer.com). I must confess, if I were diagnosed with a "rare, incurable" cancer, The Gerson Method would not be the way I'd go first, even as a health coach.

PS to Altoclef,

I didn't see your response until after I posted my last post. I didn't know of these others you speak of, but want you to know I certainly don't intend to do any of that. I don't think I'm any better than anyone here for wanting to treat with nutrition first. I don't intend to tell anyone what to do or not do regarding their treatment. I so wish I lived in an area where natural was in! We're all different, eh? Oh! And you made me seriously snort when you typed, "Or kale." I love my kale! LOL!

Lynne,

From a personal standpoint, I want you to feel comfortable discussing your trials and tribulations while sharing your discouragements and successes.

I have never seen a mean or judgemental post written by you. In fact, I find you to be encouraging and you offer sensible advice.

I do not have a single person on ignore but I've come pretty close a few times (Sally, I kick myself often for not saying more in your defense earlier. I dropped the ball and I sincerely apologize).

Lynne: when one really thinks hard about this disease, it's pretty frustrating because no one really knows the cause or the answer to beat this issue. Therefore, I think your options are certainly on the table and updates are appropriate.

Also, it might just be me but I think you've been here long enough that you can take the newbie title away!

So, to reiterate: you have not said one word or sentence that offends me. Please don't think this way. Type away - you are most welcome here!!

Be well,
TheWino

I'm still new here so maybe my opinion won't matter...But, I love reading what is working for everyone. It's always an eye opener as to what people are dealing with and going through.

The choices we make determines the life we live. Sometimes the choices stink.

Good luck in your journey!!! I'll be watching to see how it works for you!

I rarely see something on this board that I find offensive and have NEVER found anything you have said, Lynne, to be offensive! I love that we have an open exchange of ideas, challenges, and ways to deal with them on this board.

We just had a meeting at work today about communication and making sure that our communication is nonviolent. One of the first precepts was to always assume the other person has pure intentions. We don't have to follow what everyone says but we also should not judge their intentions as being bad. So even if it seems like the person is overly pushy with "their way" remember that they are trying to help and that each of us gets to decide what we want to do for ourselves.

I love this board along with all the support, encouragement and ideas that come with it. We all have valuable contributions to make.~Lori

Lynne,
You are good people, like the folks who have responded to you. We know you would not post anything that would intentionally offend any one. I for one, would be very interested in following your progress. good luck ! I hope it works for you.

I think you should be able to share what is working for you. I think that is what these groups were created for. I can't even imagine that you could/would do that in a judgmental way.

I know that certain foods have really bothered my lupus/ra and others have really helped. That's my story. Do I think that is the case for everyone? nope! Do I think everyone is in the same food boat? nope!

Do I think that food has the ability to adversely affect our health? absolutely!

I tried and tried, but could not find RA diet help with anyone associated with western medicine. I only found that help from docs who had dual degrees, so to speak, one in Chinese medicine, one in western. (my description)

Acupuncturists gave me the most help by far. Still, I had to work out the helpful list on my own, seeing what bothered me and what helped me. I read for years on this subject and finally created a mental list of what would help the most. Like I know for a fact that for me, eating broccoli is the same as using an inhaler. It works that well.
I sometimes fall off my wagon, though. When in depressive pain (not that often) or having a life crisis (more often) it is darn hard to keep on the wagon and steam organic veggies in an apron with a smile.

Having said all that, I think nutrition & lifestyle can only take a person so far. I know my dna makeup is what is largely responsible for my health issues. I am a walking model of my crabby grandmother that I loved. I didn't realize it until she was about to pass away though. All her docs told her that her pain was in her mind. She had nothing but tylenol for decades of pain. No wonder she was crabby.

I just think that food and lifestyle choices can help us quite a lot, but it is a journey and sometimes it is OK to hide in a foxhole and give it a rest and curse it all. There's a time for everything. And that is OK.

I don't understand the need for any arguments about it. People should be allowed to view it as they like. Take the advice that works for you, and leave the rest in peace. just my 2 cents.

Just to add to my already long post Lynne:

and ... sometimes ... I just want to completely forget about all the things in my head saying "I should do this" and "I should do that" because it is an added stress! I should buy organic clothing. I should use my air cleaner. I should buy green kitty litter. I should see my opthamologist (never could spell that word and I just give up) about my plaquenil. I should eat 9 greens a day. I should give up chick peas. I should .... aaaahhh!

Like many others here, I sometimes feel like screaming at all the OCD thoughts we can build up at things we could/should do. And sometimes the last thing I want to do is talk about RA which is why I sometimes take a very long vacation from this board, over the years.

You all on this board are really gift! I'm sitting here reading with my heart overflowing and my eyes following suit. This is one very special, compassionate group of people right here. I am soooo grateful I found you! So, thank you ALL for allowing me to be me. I will post how it's going on my journey. I know it won't be easy, but this board is filled with awesome people who are traveling difficult journeys. I couldn't ask for better company!

Mechelle, I want to share with you one of the best pieces of advice I've ever received in my life. It was from a wonderful therapist. He said, "Lynne, I want you to stop "should-ing" all over yourself." :) It has served me well as I battle the OCD-like "shoulds" off and on, but especially when faced with a challenge I am helpless over - like RA. Also, I regards to your Eastern/Western comment, my new rheumy is Indian. I think that's why she is so open to my wanting to try to manage my RA with nutrition. Her culture is 1000's of years old. Oh! And your crabby grandma, poor dear! My heart breaks that she was only ever given Tylenol. Tylenol will reduce a fever for me, but has never touched my pain. How different we all are, eh?