Don't know what to do

[wendi]

Okay, i have no idea what I should do.  About 3 years ago my feet were hurting.  I went to the dr's he gave me  shot and I was fine.  Then the next Feb. they hurt again and he tested me for lupus and ra and my rf came back 469.  Since then my feet hurt a little here and there and my should froze up twice, but only for abut 4 days.  I went to the rummy the other day and my RF is 571 adnd anti-ccp is above 60 whih I know is high.  I really haven't been having any pain, just wanted to see if maybe I got a false positive a couple of years ago.  I guess not.  My rummy said that right now because I really do not have symptoms I am just giving a false positive and that this happens to up to 15% of society.  They are also thinking I have a gluten sensitivity.  Shoudl I start antibiotics or should I wait to see if the gluten free diet helps my rh and anti-ccp?  Oh, my sed rate was 4 and no deterioration in my ahnd and feet joints.  I just don't know what to do.

 

thanks

 

wendi

[Jennhere]

My advice- (take it or leave it) go gluten and dairy free.  Celiac.com is a great place to get info.  The message boards are Full of knowledgable folks.  I've heard more stories about “arthritis” being found out as actual gluten or dairy intolerances….It's a super easy fix if that's what it is. (if you can commit to 100% gluten and dairy free) I mention this because for some people… doing the dietary fix seems like a Herculean feat… That's a sad thing.  Dietary fixes are the best! 

Jenn

[wendi]

Jenn,

I forgot to mention I have an appointment with an AP doc Tuesday and am I am wondering if I should still go?  It's a 3 hour drive each way plus the cost of the visit.  Just asking?

Wendi

[John McDonald]

I am all for starting AP as soon as possible. But 3 hours is a long drive, 6 is even longer. Some of the listed docs no longer offer AP, or they only offer it if you insist and know exactly what you want. I believe I would phone doc or otherwise confirm that doc still readily offers AP before I make a 6 hour round trip drive.

-john

[Jennhere]

[user=3]John McDonald[/user] wrote:

I am all for starting AP as soon as possible. But 3 hours is a long drive, 6 is even longer. Some of the listed docs no longer offer AP, or they only offer it if you insist and know exactly what you want. I believe I would phone doc or otherwise confirm that doc still readily offers AP before I make a 6 hour round trip drive.

-john

John, why are they no longer offering ap?  Has something negative happened?

[John McDonald]

Jenn – I have been volunteering as an APNC for the Road Back for a few years. As such my job is to distribute the list of docs for California or nearby states about once or twice a week when someone sends me an email asking for it. It isn't a tough job and it gives me a chance to pre-encourage the patients with myreturn email.  Actually I have made a number of good friends from the ensuing corresondence and some of these people have improved enormously on AP. But in the early days when the patients would phone or see the doc nearest them it often didn't come out well. All of the docs are known to have given antibiotics to Road Back patients, the list comes from patients. But the list is old. Dr. Brown is long gone and some of these docs have retired. Others only gave the abx to patients (like me) who knew exactly what and why they wanted them. Some give abx because they are the “open minded” sort that might give you snake oil if you asked (good enough for me, I know what i want and how to take it). Some no longer offer abx and others have simply moved or died. I think a big problem is that without Dr. Brown, we don't have a medically respected leader for vanilla AP who can make new docs feel at ease with it. And the American College of Rheumatology tends to be hostile to this career threatening treatment (my adjectives).  The docs are deluged with ads and meals and goodies and papers from the TnF blocker industry, and they sure aren't kind to the microbial etiology theory.

What we have is a cadre of dedicated patients like you and I and many others who know from blessed personal experience that AP works; works like a miracle, albeit a glacial miracle.  So we keep it alive with websites like this, with word of mouth and we slowly, incrementally create new AP doctors here and there. But many of these newly minted doctors are more open minded than they are true believers. If you phone them they would say no, though they might give AP to a motivated patient.

The RBF plans on improving the doctor list with the help of volunteers. For now it is what it is. I gladly give the California list to those who ask for it but I tell them that Dr. G and Dr. F are the true believers and that they simply have to use care with the others.

-john

[Maz]

Hi Wendi,

Your post piqued my attention, as your numbers are very similar to what mine were in the beginning. Anti-CCP above 60 and, at my worst, my RF was in the mid-500s, too. After being on abx for the past 14 months, my RF is now down to mid 50s (although my anti-CCP is still above 60 – this one can take longer). RF can be elevated in any number of rheumatoid conditions, but anti-CCP is usually considered confirmation of seropositive RA. Fingers crossed that your doc is right and that you are just reading a false positive.

If you haven't already read “The New Arthritis Breakthrough” by Henry Scammell, then it would really help you to try to get a hold of a copy soon, so you can quickly become your own health advocate with this. Doc Brown's book, 'The Road Back” is included in the above book and he mentions early symptoms of RA being fatigue and vague, transient pains (similar to palindromic RA). He recommended treating patients early to avert the sometimes very sudden (like me) or slow, downhill slide.

John McD's experienced suggestion about checking that the doc is indeed willing to prescribe minocycline to you in advance, especially as you are traveling some distance, is excellent advice to ensure you don't feel you have wasted your time, effort and money. One thing to our advantage as APers is that minocycline is actually approved by the American College of Rheumatology for use as an off-label DMARD for RA (see MIRA trials and other studies at the RBF site) in much the same way as methotrexate, an immunosuppressive drug originally designed to treat cancer. “Off label” just means that the drug was formulated for some other use, but that it can be used at the treating physician's discretion for other purposes. The trick is finding a doc willing to use his discretion in this way!

Wishing you all the best!

Peace, Maz

[linda]

Do you think we're losing AP docs or is it that we're losing AP patients? Are some dropping the protocol because they can't tolerate the herxes and become impatient with the long recovery time (it's tough to compete w/therapies that provide results w/in 1-2 months, as opposed to AP's 1-2 yrs) – then when their docs see that they are not returning they conclude that the therapy didn't work and become less inclined to rx it to others? Just curious, this is the 2nd time someone has posted this weekend about the docs on our list not rxing AP anymore.

I was hoping that the next generation of docs would be more open-minded about AP, are we seeing the opposite happen? Say it ain't so!

[John McDonald]

Linda – no statistics on this and no record keeping. That probably takes more volunteers than the Road Back has ever had. So all we can have is a feeling about it with no idea if it is accurate or not. My guess is that because of the internet and the what, 5 other AP and AP related sites there are probably as many patients on AP now as there ever were and maybe more patients. There are some AP docs that are too busy to squeeze folk in.  I also bet there are fewer AP docs now that the MIRA study is half forgotten and the book is growing old. But it is a guess about growth or shrinking of doctors or patients; no one knows.

I'm sure I never would have volunteered if Doc had offered me AP as one of my sensible options, but my doc did no such thing. I'm sure he knew that AP is an approved DMARD with positive double blind test results. But he told me that my job was to do my job and his job was to keep me doing it. He didn't want me to be a sentient participant in my treatment at all. I was so much meat on his examining table. When I discovered AP I abandoned him within the month. I aim to keep on volunteering until this is either mainstream or until I pass along. The MP is growing rapidly, possibly because it has a technical champion.

[wendi]

Maz,

Thanks for the info.  I know the doc is willing to prescribe ap.  I guess I am just wishing I'm fine.  I will go on Tuesday and hopefully everything will go down and I'll be fine.

Wendi

[marg]

I always wonder if the typical slow response to AP leads uninformed doctors and patients to conclude it doesn't work . We are living in an “instant age” where we want/expect fast, easy results…??

[marg]

I always wonder if the typical slow response to AP leads uninformed doctors and patients to conclude it doesn't work . We are living in an “instant age” where we want/expect fast, easy results…??

[Author]

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