Anybody out there interested in forming a study group and healing together?

Hugs,

Pip

I'm not thinking of anything too deep or whatnot - just asking each other questions or maybe posting things we find interesting.  It's really hard to find like-minded people interested in really exploring 'alternatives', supplements and herbs and trying to figure out which has some good science behind it and which is 'bunk'.  Lots of bunk out there.  Sigh.

That and I found an article that said CAM is really gaining acceptance.

http://www.latimes.com/features/health/la-na-meds11-2008dec11,0,1860282.story

Actually, I found even more but I can't find them.  LOL

As for the probiotics - man, I have a tough time with that.  I take antibiotics, probiotics and anti-fungals and NONE of them can be taken at the same time.  And all need at least a 2 hour window so they have time to get absorbed.  LOL  When I was first sick, I used to use an alarm program on my Palm Pilot to tell me when to take stuff but that got really annoying after a while.  Then I was told my abx only lose about 15% effectiveness when taken with supps (later verified to be true) so I just said what the heck and started taking the supps with my naproxen in the AM, two hours later the abx, then if I can remember the probiotics with lunch and more abx 2 hours later.  Then late at night I take the rest of the probiotics. 

Which probably doesn't help you.  What kills me is I use the refrigerated probiotics so I always forget to check the fridge.  If you can split them up, that's probably better.  I found taking them with meals to be more effective - plus I figured that putting them closest to the food helped them to get the nutrients out.  LOL

What kind of probiotics do you use because that makes a difference in effectiveness.

Hugs,

Pip

Not a lot of people seem to have tried alternative treatments, although someone mentioned a chinese herb treatment and others some commercial/internet 'cures', but I am very skeptical of those.  I've spent hours reading RA folks posts, and it is heartbreaking at best.  The side effects people experience from these horrible drugs used by RA doctors as their first line treatment is appalling.  Read a recent statistic that over 2 million people are suffering.  Nice size audience for Big Pharma to extort multi-billion dollar profits from!   These boys don't want a CURE.  They're making billions on bandaid pharmaceuticals, with little regard for how many people they kill in the process.  Yeah, miracle drugs alright.  But, these are the only sad options RA sufferers are given. But, I could go on for hours about US medicine, and this is not the time.

I was diagnosed in early 3/09 with RA, right after my 57th Bday.  I have an RF of 225, purported very high.  This complete jerk rheumatologist I first went to didn't want to hear one word, nor discuss, ANY alternative treatments.  Mr. God had already determined what I would be prescribed, but I walked out, while requesting all my medical records.  I immediately sought an alternative practice, went through dietary changes (gluten-free), an IgG food allergy test, an intestinal permeability test, all to rule out possible contributing causes, since there is no family RA history.  Cut out alcohol, dairy, with no changes noticed.   I started colloidal gold (50ppm) in early July, and take a whole host of anti-inflammatory supplements, plus glucosamne, mag, cal and so on.  I was SO hoping gold therapy would get my immune system in check.  It's not supposed to be a quick cure but it is supposed to work.  After almost two months of colloidal gold, my symptoms continue to worsen each week.  I am in crushing pain from my neck to my feet, and losing hope the gold will able to get the upper hand on my RA.  I can't get through a day without major OTC painkillers, also scary in long haul usage. 

You mentioned Antibiotic Protocol, and that is where I am headed.  Have made a new RA appt. next week and hope this dude will at least talk to me.  I have done a bunch of research on minocycline and it's connection to auto-immune diseases and want to start there with the least harmful treatment plan.  There seems to be supportive research that a lot of auto-immune diseases may be caused by people contracting some sort of bacterial germ that sends the immune system into hyper-drive.  If you cure the underlying problem, your immune system will hopefully re-regulate itself.  I'm praying I can get into treatment locally, but know of a Dr. David Trentham @ Beth Israel in Boston, who has had great success treating patients with Minocin.  Spoke to a local man who ten yrs. ago was told by his local RA dr to "get his things in order", as scleroderma would take his life.  Through taking matters into his own hands, he connected with Trentham and he has been cured for 10 years now.  Problem is the RA doctors only know how to mix their pharmaceutical cockails for people and are blind to anything else.

This study you mentioned must have to be under the auspices of some doctor, otherwise you can't get scripts for the antibiotics, at least in NY.  I would like more information on your proposition for a study group.  You mentioned a lot of other supplementation, too, which I would appreciate receiving info on.  I've got this impending RA dr. appt. on 9/8 and would love any information I can get prior. Thanks for a reply.  I don't know what PM means, as I am a recent member.  If you can send something to my profile, that would be great, otherwise my email address is dcwgrafton@aol.com/      Thanks again.

Yes, I've been a member of AF almost from diagnosis.  Unfortunately, I'm also a tech-#####.  The old AF board was sooooo hard to operated that I gave up.  Later, I was asked to come over again and the only way I could find my way to the RA forum was if they sent me a direct link.  One day I sat down and decided I could figure it out and two days later I finally did.  LOL  The new board is easier for me to navigate, but not by much.  I've been back a few months now and decided to look around and...there it was! 

I've been studying Chinese medicine in Pubmed and it seems to be a really good option - but I guess it all depends on finding a pure source.  There is group working on certifying everything but they are still arguing amongst themselves.  Lord knows how long they'll be at it. 

That is a high RF.  I was diagnosed at 353 and was at 706 when I started AP.  My AP doc said that was a good sign because my body was fighting like heck to beat this (it was losing, but it was fighting).  Did you get your CCP?  That one is really definitive (sort of) and will show if it's rising too. 

I'd really like more info on your IgG testing and your intestinal permability test.  I know I have something wonky going on with absorption issues but every test keeps coming up 'normal'.  What kind of docs do I look for?

Collidial gold (and silver) are antimicrobial in nature, however, they can also be toxic.  Did you verify your dosing to make sure you weren't getting toxic levels?  Because you may have to chelate to get rid of it.  You could be herxing...but...I'd verify toxicity first. 

Never give up hope on getting the upper hand!  All you have to do is figure out what your body needs.  Too bad it doesn't leave a note when we're sleeping...but...you can do it!

Yes, there is a TON of research out there showing myco's being responsible for most, if not ALL, autoimmune disease.  So much so that I'm rearranging my filing system by disease.  LOL 

Have you been to www.roadback.org or www.rheumaticsupport.net or www.rheumatic.org ?  Great places to read AP journeys and figure out what the roadback to health is going to look like.  Or have you read the book, the New Arthritis Breakthrough by Henry Scammell?  Easy, quick read and goes into the politics of this.

Trentham doesn't believe in the 'Infection Connection' to all of this - but who cares if he gets you into remission.  He thinks it's all immunomodulatory.  The only bad thing I've heard is that he's not big on probiotics.  That's the one thing I think is under stressed in AP - it's gonna fail if you don't use probiotics - and a LOT of them.

As for the group, I'm not thinking of some college level course - just people interested in healing with natural methods helping each other and researching to see what can be the good and bad with what they choose.  For example, Minocin binds to magnesium and potassium so we can't take them near the abx.  But we need to supplement that because it's going to be leached out of our bodies with the abx.  Or lets say you are interested in Devils Claw - well, maybe I have one or two studies on it, but I can't help with more info off the top of my head, but I do have Pubmed on 'speed dial' and I could find the good and bad and you make a decision from there.  Or maybe somebody who's on it pipes in and tells what they experienced.  I can wax poetic on probiotics for HOURS.  LOL  But Devils Claw - not so much. 

Anyway, I emailed a test message so check your spam folder (I always end up in there) and I'm going to PM you right after I hit send.  Look under your profile and see if you can find it.

Hugs,

Pip

I would like to list all the supplements I take.  It is a lot and when I think about dropping any of them, I can't find any to drop.  I just started some of them so I haven't decided if I like them or not.  Sometimes I think I go a little overboard.

vitamin C, calcium, vitamin D, vitamin E, folic acid, 'GNC hair, skin and nails formula', probiotics, lutein, horse chestnut, butcher's broom, citrucel, fish oil, senior multivitamin with minerals, pau d'arco, magnesium.  I use Kwan Loong oil for sore joints. 

Deborah, welcome to the site and sorry about your diagnosis.  You're lucky to get it later rather than sooner.  I just turned 60 and I have had RA for 25 years.  I took gold shots years ago and it worked very well for me.  It took quite a while though so hang in there.  I think it was 6 months before I reached the full effect.  I also had my share of jerk rheumys but for the last 17 years I have had a good one.  I have quite a large family and only an aunt has RA.

That's all for now, it's after midnight and my hubby is waiting for me.  ss

Got your response and also email.  Not seeing an ability to communication through profile, as friend to friend...??  Gee, wouldn't that be handy! 

Off to PT/dr, so I'll try to hop back on the computer later today and try to relay the info you would like.  Wishing you a GOOD day!

Deborah

Sorry to hear you've fighting the good fight for so many years.  Curious as to why you stopped the gold.  I'm doing this on my own, i.e., taking colloidal gold  (1oz.-50ppm) every day.  I knew in advance the progress would be slow, although my RA isn't!  Arth Foundation publication says doctors are using gold salts (apparently when they can't push the methotrx/enbrel, etc. on a patient!), whereas colloidal gold is atomic gold, completely non-toxic to the human body, and known for it's merits since Greek times.  I honestly don't know if I could/should be taking more.  It hasn't stopped RA taking me down in just this short time.  If you had results, what were the factors that took you off the therapy?  I don't want to be over-nosey, but as you can see it has great significance to me.  Honestly, I'd hang in there if I felt confident it would eventually do the trick.  Just hate living day and night on OTC pain meds & Darvocet just to be able to do minimal activities or change a position at night.  I am confident the gold will never hurt me, but not so for the  OTC's  or prescription pain killers!

Upon becoming convinced of the benefit of Antibiotic therapy, it dawned on me to start the colloidal silver (12ppm), which I always have.  It is one of the most amazing, inexpensive antibiotics out there, and maybe it might work as well as a tetracycline-based therapy.  Again, I've only been taking 1-1-1/2 oz. per day for the past 3 wks. and that may not be enough to get the better of crap in my blood. There's the argyria scare issue, which only occurs in massive dosing situations,  I so wish I could find a knowlegeable source for dosing information, but they seem non-existent.  I don't even think the alternative care dr. I was seeing would go there.  All of them are so lawsuit phobic.

So what therapy are you doing now?  Obviously, you're taking care of loved ones and life's needs.  I just bailed on a semi-relationship because the demand of energy was killing me and I needed the energy to tackle this RA issue.  All information we share is good food for thought!

Appreciate your time and response!                                Warm Regards - Deborah

I love that your probiotic has multiple strains.  I use Solaray Multidophilus 12 which has 20 Billion live cultures per pill.  And I take MANY pills as I'm on abx.  The secret to probiotics are bowel movements (yes, I'm the only person on BB's talking about THAT).  I also take a saccromyces Boullardi (spelling) which has a lot of research behind it and doesn't need to be refrigerated.  There is some research I'm tracking down about using organic honey to repopulate the gut with what you grew up with, but I just don't see talking some farmer into beekeeping in another state for me.  LOL 

When I got diagnosed, I developed HBP which, unbeknownst to me, I was keeping in check with magnesium and potassium and calcium.  But last Christmas I stopped my meds and supps (not intentionally - just crazy busy) and flared on NY's Day which lasted for 36 hours (and if you think I didn't up my abx to 4 x a day to jump start - think again).  And my BP shot thru the roof.  My Intergrative medicne doc caught it 5 days before the flare and was adamant about notifying my AP doc.  Anyway, it scared me to death because I didn't think I had HBP and hadn't before onset.  It was really high so I researched my butt off and Hawthorne was one of the supps for HBP.  I just added it in because I didn't want to wait the 3 months it can take for Cal/Mag/Pot because it was that high.  I was always 120/80 but when I flared it was 159/96-ish.  And I could feel the blood pounding in my head.  Yucky feeling.  So, now I'm normal again, but I don't want to drop it until I get that RF down and then see what happens on a slow wean.  Thank God for those CVS machines, right? 

Yes, I think the tumeric helps - tons of studies in Pubmed about it's anti-inflammatory properties.  And since I can't take a lot of NSAID's, I think this helps keep the inflammation down so the abx can reach it's target better.  Same with the Milk Thistle and Pubmed.  I had 3 elevated LFT's in a row prior to starting AP (self poisoning with Aleve) and I was terrified they were going to make me stop AP because LFT's can spike when starting.  Due to a lab screw up, I had to retake my LFT's only 2 1/2 months after starting AP but I was normal by then.  Later I confessed my Milk Thistle to my AP doc and he said, 'so that's why your tests dropped so dramatically'.  LOL

I'm slammed until school starts but tomorrow I'm going to go over your list of supps.  I want to verify that there are no countraindications.  Oh, wait, I don't see your meds on your signature.  What I do is double check with multiple sites for 'countraindications' and 'side effects'.  Here's one I use. http://www.pccnaturalmarkets.com/health/2411003/  I also use one of the sites for traditional meds but the link I have no longer works. Some of them allow muliple medications and that's really cool.  Not that anything looks bad to me - I just realized that I don't know some of them and I want to know what Pubmed has!  LOL  I LOVE PUBMED!

Pip

PS - what's in the GNC Skin and Hair formula?

Deborah, I stopped the gold because I had taken it for a year and after that long, it needs to be tapered down to once a month instead of once a week.  When I started to taper, I would become symptomatic.  That is when I started the MTX and the gold was stopped a couple months later.  The gold I took is gold sodium thiomalate taken by injection.  I get the impression that it is quite different than the colloidal gold?  Is it a prescription?

OK, I just researched colloidal gold and silver.  I never knew there was such a thing.  It sounds like a good thing to try. ss

PS - what's in the GNC Skin and Hair formula?[/quote]

Vitamins A,C,D,E,B1,B2, Niacin, Folic acid, Biotin, Pantothenic acid, Calcium, Phosphorus, Zink, L-Cysteine, MSM, Hydrolized Gelatin, L-Mithionine, Alpha Lipoic Acid, Zinc, DMAE, Green tea leaf extract, Horsetail Rush Stems, Boron, Pantethine and Lutien.