Unfortunately, the founder of the group you mentioned hasn't been around in quite a while, but I will start visiting it again.

FYI, one alternative group that seems to be pretty active is this one:

http://www.dailystrength.org/groups/curing-autoimmune-and-mimics-gaining-health

It seems to focus on maintaining a healthy gut, and part of that involves eating homemade fermented foods such as kefir (made from raw milk) and sauerkraut (raw, unheated).

Good Morning

Everyone should learn all they can about this "stuff" we deal with and looking for alternatives is a path well traveled. My DO (PCP of choice) is a firm believer in eating right and supplements for joints and organs which I take LOTs of and over time and based on what I have learned over time seem to be holding the RA at bay - what you don't "see" coming is the insidious side effects and manifestations of this "stuff" as it relates to the immune system.

I have old college friends from a long time ago that are now active researchers at Johns Hopkins and we chat once a week about "stuff". The Mayo clinic also has a host of information along with other links to other sites.

This DS group is also a great place for lessons learned, ongoing issues and a safe place to vent, rant, cry or just discuss.

I know of situations where folks with "alternative" agendas will chime in to offer distractions - why, I don't know, but they do.

Learn all you can and be well
Peace
Bluedogs2

Jen, I must respectfully disagree with your closing statement.

First, let's look at my mother's case. She was diagnosed with RA in her early 40s. Was treated by a rheumy with the current treatments. By the fourth year of treatment she had advanced RA, one hand all the fingers were horribly twisted and the other was starting. At this point rheumy advised her to accept her fate and pick out a wheelchair.

At the end of her rope and just about devoid of hope, my mother started to look at alternative medicine as her last option. It was then that she ran across Dr Brown. She traveled across state lines and paid cash for his treatments of Minocin. Within 6 months she was in full remission and has remained so for over 20 years.

My case: my mother actually diagnosed me over lunch when I noticed a string of strange symptoms and 'injuries that were never injured' over a six month period and discussed them with her over lunch. At that time, 2002, I was newly divorced, living at the poverty level and was uninsured. So mom went with me to the Health department. That doctor agreed to give me a prescription for Minocin, since it wasn't a controlled substance and there was no way I could afford to see a rheumy anyways. The Minocin kept my symptoms at a 2-4 joint daily flare which was tolerable.

I finally had a regular GP in 2005. At the time I was f/t back in college and having problems walking across campus so I needed a handicapped tag. His father, orthopaedist in same office, took xrays and confirmed that there were just the slightest bone changes consistent with RA. He recommended special shoe inserts. After getting these my RA foot symptoms were negligible.

I had my first true super flare in 2009. This was after the insurance company jacked up name brand copay from $20 to $150, forcing me to try generic. Within a month I was unable to even dress myself. All joints but hops doubled in size and locked up. GP forced me to go to a rheumy.

Rheumy and I knocked heads a little since I refused MTX and just wanted prednisone as a bandaid until my generic Minocin ran out and I could go name brand again. But he relented and gave me the prednisone. Six months later I was down to 5mg and health wise back up to 80% of preflare health. I continued steady improvement and got off the prednisone entirely in fall of 2012. I was back to mild/moderate RA with 2-4 joints affected daily. All due to Minocin.

2013 was the year I got my health back - by mistake! In January, I was sick of carrying the prednisone weight and entered the workplace biggest loser contest and started the paleo diet. By February, both my RA and IBS had vanished! I was fully normal again until July, when I had reached my dress size goal and started adding foods back. I had 3-4 very severe 2-4 day flares last fall. All of which were traced back to specific food triggers. On Dec 31st, food allergy testing confirmed the trigger foods as strong allergies and identified many minor ones. Using that information to guide my eating I have enjoyed full diet induced remission again.

In both of these cases alternative treatments have been used in place of aggressive medication therapy with great and ling lasting success in either slowing disease progression and/or haulting disease activity. This leave both of us with fully functioning immune systems and the option of considering aggressive drugs in the future - if necessary.

But right now our medical teams: the GPs, rheumies, allergists and orthopaedists - are all encouraging us to continue what is working for as long as it works. And as you've seen, different alternative therapies worked differently for each of us. There is no single treatment for everyone.

Thank you so much for all of your input. I value each and everyone's wisdom and you have all been a life saver to me.

RASally makes a great pair of points

1. Advocate for yourself - if you don't, you are the mercy of a system that has little respect for "YOU" and just goes through the ropes of this how we handle "ALL" RA - that doesn't work well - we are all different and each has our own set of problems which don't always fit the established norm of the medical community

2. This "stuff" is very personal. As for me as I read some posts, I am shy about responding to the item - to me, with what I struggle with physically is entirely different that my emotional and spiritual struggle. I do not care to share that because it is me - personal to me

Well done RASally and a BIG cyber hug for bringing that forward. We should all remember that our written word is sometimes biased with pain or personal self protection.

Be well ALL

Bluedogs2

As I had done naturopathic training when I first started having the big symptoms I tried everything I knew - diet, fasting, therapies, tinctures etc.

This included acupuncture which didnt work for me although I gave it five months. (Included a couple of times where nearly fainted with reaction and practitioner used the "recovery" needles!).

Seems that some alternative things will work and some dont - just in the same way allopathic drugs such as Arava work for some and not others.

So I dismiss nothing but hope I dont climb on bandwagons in general but say where some things have helped me.

Diet has helped but the best period with that was still when I was on drugs as well and was such a drastic regime I couldnt keep it up and function - I was still working part time. It didnt help before I went on to drugs. Nothing seemed to stop the raging beast!

You can spend a lot of money with alternative practitioners to no avail and its the same with allopathic drugs in the countries where you pay. At least I get them free after a small payment for the first 20 items (NZ$100 all up) which doesnt take long in my case.

This site is free.... and maybe best value I have had since diagnosis!! (And I hardly ever get any ads....lots of computer ad protection but I suspect it is the reason I am occasionally "locked out" ).

So hilynnea good luck with trying anything!

It is always worth looking at a using natural methods, but as 51percent said, once they don't work or IF they don't work, conventional (which is now not conventional with all the biologics - soon it will be full circle that we nail diseases like RA with our own NATURAL cells! ) medicine is THE ONLY ALTERNATIVE.

Love the play on words in all that.

One person on here, nomorera, did her BEST to beat RA w/natural remedies, alternative remedies, etc. She really did give it a good go, but when the pain and loss of ability was too much, she gave humira a try and she is back to who she used to be, loving and living life!

And Wendy55 did the same. She took a full year to work with a homeopath. No dice. Poor thing. Well, she felt better for a bit, I think, then worse.

Life is to be lived - any way we can do it.

i agree that 'alternative' medicine should be referred to as 'complimentary' medicine. like jen, acupuncture helped me with some pain after car accidents... i turned to acupuncture after i was weaned off pain killers and still had some residual pain. reiki, energy, and swedish massage are also excellent compliments to western medicine. there are a few reputable studies that show omega 3's taken daily over the course of time help alleviate some inflammation.

i do not believe that acupuncture and flaxseed oil capsules will cure my RA; i know nothing will cure my RA. hell, at this point, western medicine isn't even treating my RA very well. complimentary medicine can not only help us feel better, but it puts us in control of at least part of our treatment.

Thx to all for an amazing thread.so much info especially 2scicrazed.I don't post a lot but I read a lot here and it helps so much.take care.

I agree with 51% in that alternative therapies need to be used "on top of" conventional medicine or in addition to medicine. I too believe we all are of course so individualized in our need and response to either traditional medicine or 'alternative' treatments. Shortly after my diagnosis of RA I did some on-line research and requested Minocin from my PCP while waiting for my first appt with the rheumy he had referred me to. After presenting my doc with printed out infor on my research and a pleading conversation, my doctor agreed (afterall, what was it going to hurt?!). I stayed on the Minocin for a period of a couple months until my appt, can't say as I saw any response at all, good or bad. The rheumy said he had never really seen any adequate amount of response of his RA patients to Minocin and d/c'd it and instead put me on mtx , plaquinil and a waiting list for Enbrel (this was 14 yrs ago when it first hit the market and there was a national shortage). Enbrel came thru after about a month and I'm still on it today, but sadly it has run it's course now I believe. I've never really had to guts to try any of the diet changes, until now, I'm trying my best to cut out processed foods and sugar (new years resolution) so it's not been but about a week. I'm doing pretty good, so far, and am trying to 'eat clean', I figure it can only help! When you live in a very rural area it's hard to go on a lot of the diets as items are so limited in these little grocery stores. but anyway, I'm giving it a go within my limits. I would like to try acupuncture but that's something that would mean a 65 mile round trip for me, so I can't do that right now but I can continue an optimistic attitude with my medicines, diet changes and continue to get as much exercise as I can tolerate. We all have to do the best with what we have available to us. Best wishes!

after suffering with migraine headaches for 6 years, exhausting all conventionals docs, specialists and meds (diagnosis was epileptic seizures strong enough to trigger), my mom took me to an acupuncturist. He was an MD that had been to China for 2 yrs to study. I was 15 yrs old. As you know Ep is "incurable". After about nine months of visits, no more headaches. Haven't since had another EEG (?) to see if the brain patterns of Ep persist....don't really care. 52yrs old now minus 15yrs old then equals 37yrs of no migraines. What do y'all think is my opinion of "alternative" medicine.......

no night shadees - maybe its the pack of butts you smoke every day that is a natural comfort. i know people like their comforts western or not. i bet the smoke is soothing and addictive. does that fall under natural or western care? what about mariquana? ny kids talk about that a lot - is that western? natural? illegal?

2c and hi - the group that split off from here, to form, alternative help for ra split so the similar voice of 2c and nigh shades could be the dominant and comfortable voice moderated by host or hostesses that accepted this view as the sites view.; voices that repeat the same thing over and over make good new moderators. they all used to be on here. i miss them. i guess the western addicts were a disappointment and boredom, not sure. i know the support i get from all of you is invaluable, not so before. before i felt like every comment was met with been there done that, DO THIS. this group here does not do that. instead of dispesning dictates we dispense support.

nice

i lean towards more whatever works with you, your family and your doctor and your employer. try to stand up more days than fall down and you win.

as i recall the endless joining of newbie after newbie here sucking back conventional western medicine can be boring if not jarring to one on a solely non western bent. .

on the other hand over here in western world we get jolted weekly b y one screed, one diet, one view after another, mostly antedodal and personal. one week it's a phamarcy person yelling at us, another a big diet war.

talk about endless.

this site is not a natural site. if seeing and hearing persons talk about the totality of the selection of their treatment is upsetting, don't be, we are here for it all.

how can we support you?

NOT how can you cajole us?

again, how can we support you?

just out of hospital - c5 blow out - cord swelling, loss of left arm, typing with right.

the mri was scary but the loss of left arm more scary.

jen, dont' scare me more. i am in pain and need support. if you can email me direcftly. my big surgery is monday

Ros

didn't smoke then ros.

oh, ros, hope you feel better. hope that you do find something that works for you.

As a new person, I have perceived things differently. I let some people hurt my feelings when I asked about the Leaky Gut Syndrome and I just want a safe site where I can ask things about alternative or what ever you want to call it without being criticised for bringing up a touchy subject.