New here- needing help….

[JustPeachy]

Hey, Devie,

Glad you found the board. The wonderful people here and Dr. Brown are real lifesavers!!

I was diagnosed with RA last March. I did 8 injections of Enbrel because that is what my rheumy told me was the *normal protocol* for a moderate-to-severe patient. Well, I did my research and what I found scared me to death. So, I stopped taking it. He said I HAD to go on some type of disease-modifying drug or I would be crippled. I tried the Methotrexate. I did 4 pills weekly x4 weeks and developed a mouth ulcer inside my cheek about the size of an eraser tip. Very nasty looking – like a blood blister. That went away and underneath were several stomatitis/cankor sores. Ugh! I reasearched this one and found it waaay to toxic for my liver and needed regular blood tests to monitor functions. I stopped this totally for several weeks. (At the time I was on Mino but it was making me dizzy). After 3 weeks, and 1 week before my rheumy appt., I took 4 MTX. Three mouth sores developed inside my lower lip. That did it. No more! This is MY body and I make the choices from now on. :angry:

I actually brought the book to my appt. My rheumy said something like, “So what is your plan, doctor?” heh-heh… DOXY!! Whatever you do, don't let the rheumy talk you out of it, if this is what you want to do. And most will act like you don't know what you are talking about, unless they are experienced AP docs. Mine whipped out his Rx pad and said see me in 6 weeks. Well, I made the appt at my convenience at 8.5 weeks. Maybe he knows this will work. 😉 

I have been on it since Aug 6. I Herxed badly a few weeks ago for 5 days, but then woke up and WOW, some days I don't even remember I have RA! This is a miracle drug, IMHO. I hope you consider AP –  it is by far the least invasive and here is the big deal breaker:  IT CAN PUT YOU IN REMISSION, NOT JUST SLOW PROGRESSION! If you take any of the other scary drugs you have to jump from one to another, as they lose effectiveness and become toxic, and they all do damage to the liver and other organs and have an increase risk of CA and infections. I hope you decide to try this!!

If you haven't watched the Dr. Brown video, it is very, very interesting. I highly recommend watching and reading Henry Scammell's book, The New Arthritis Breakthrough, which has Dr. Brown's book The Road Back included.

Good luck to you and let us know how you are doing! :D:D:D

 

[maz.aust]

Hi Devie & welcome from Australia (I just love that we are Global)!!

It is easy for some doctors to just do what they always do and treat as they always treat & that is OK for some people but not for others.  Like you, I was told by one rheumatologist if I didn't go onto DMARDS I would finish up in a wheelchair, that if I didn't agree to take the medication she wanted me to that she couldn't help me & that in 6 mths I would be crawling through her door begging for the drugs – to that particular doctor it was all black and white, her way or the highway.  It was her attitude gave me the impetus to do my own research.  Surprisingly, within 4 mths I knew enough to make an informed decision about what treatment path I wanted to use & have been strong enough to say no to a couple of rheumatologists along the way.  In choosing to use AP to treat the disease I have, I am doing what I believe is in my own best interests.  AP is not voodoo, it is one of many treatment paths available to doctors that they can use.  In choosing AP, as my treatment path, it has given me my life back, allows me the ability to look forward to the future & has taken me from a world of excruciating agony to a place where I wouldn't even say I am in pain anymore. 

The jewel I found along the way is the support of the people on this forum; I am truly lucky to be a part of this 'community', The RB forum is a place where I can ask any stupid question that comes into my head and know someone will answer me.

Good luck,
Maz – Aust    🙂

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Candyass]

Since parts of this deals with adressing the doctor with this treatment I'd like to share how I approached it.

1. I read up on it really well, including the Arthritis Breakthrough, blood test, clinical trials etc.

2. I contacted some of the doctors who were mentioned in the clinical trials at clinicaltrials.gov and asked them if they still do AP.

3. Got the names of Drs. (from the road back foundation), who are known to practice AP in my area, contacted them to verify that they did. One of them is in my rheumy's group but does not practice it any more (bummer).

4. Now that I had in-depth knowledge of the treatment, the plan, and backup doctors if my rheumy would deny me (which I expected), I presented it like this:

I said: I don't do anything without reasearching the crap out of it. If I buy a car, I'll know what the right price is, how the sales person makes money, how much he should make, what a holdback is, how not to get screwed on a trade-in, how to bargain and what to say – because I researched it all. Now, here's what I'd like to do: Mincocycline 200mg/day MWF, then taper off MTX starting 3 or 6 months into the treatment. I have corresponded with so-and-so (name dropping) who are well known and prominent in this arena, and they are still using this treatment for RA.

I then said: Is this something I can do with you, or do I need to find someone else? (Note: I was ready to fire the Dr right here and move on to my back up)

To my surprise she said: I can do this for you, then asked – what's your long-term goal? I told her what my goal is and she gave me the line of 'it's not the standard of care' – to which I responded: If I was interested in the standard of care we wouldn't be having this conversation.

So, even though I'm 'on my own' I was able to get a conservative 'standard of care' doctor to work with me and I think it will get better as we go along.

1. Know your topic. (Knowledge is power)

2. Make the Dr. realize that you're in charge of your own health and that he/she is the person you've hired to help you. Just like you'd hire a mechanic or a roofer – you choose one you like and who does a good job.

3. Have a backup plan (other doctor) – your confidence and readiness to leave will be obvious in the way you express yourself with that knowledge.

4. Know what you want. If you know what you want do, a denial from one Dr is just a queue to move on to the next one (this Dr obviously was not the right one)

Also know that in the doctor's defense, many of them are projecting onto you the only thing they know, the standard of care – which is what they were taught. If they take a chance on you they may be ridiculed by collegues, or feel like they take too big of a risk by deviating from the staked out path. Just like anyone else, they're only as strong as their knowledge, or as weak as their lack of it. Just like mechanics, some kick azz, some not so much.

It remains to be seen if it works for me or not, but I envision myself giving the Dr. the Arhtritis Breakthrough as a present when I see improvement in both how I feel and in the blood tests.

HTH
C

[lynnie_sydney]

C – sounds like you really have this down! Congratulations on getting the result you were hoping for from the first doc. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Way to go, C!  I love your no-nonsense approach, and by the time you get through with her we may be able to add another doctor to our AP Phoenix list. :roll-laugh:

Take care…….kim

[JustPeachy]

Wow, C!

Big kudos to you for being proactive in your health! You've had RA for some time, but I know you will do well on the AP and will shock the socks off your “this is not natural” doc! 😯

Good luck and keep us all updated!

P.S.  Can I take you with me when I go car buying in a couple years? You are right, knowledge is power!!! 😎

[Candyass]

I'm only baby steps into this but that first hurdle is a big one and hopefully someone will be able to draw from this experience, just like I will from all of yours.

Thanks!

[maz.aust]

Hi Candy,

Wow — you are obviously not a woman to be messed around, it's clear you are a woman who emits power and has that kind of 'don't mess with me unless you want to take me on' attitude.  Good for you!:D

You are right though, if you don't like the answers the doctor gives you shop around!

Credo's to you ,

Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

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