ANTIBIOTIC PROTOCOL!!!!!

I think there's hope.  It's antibiotic therapy.  Anyone read, "the new arthritis breakthrough" by Henry Sammell?  My head is spinning.  I have been seen by a dr. franco in Riverside california.  I got the recommendation from the roadback foundation.  they have a website and an active chat room on the subject of AP.  I can't believe it... wait, yes I can!  It's not making a pharmeceutical company rich!  I'm so ad on the one hand and s hankful on the other.

Thanks! I found the support over at the roadback site very useful in deciding to go for AP. They are all so happy with the results. If you are not near Ca where dr Franco is, the AP folks over at roadback know all the docs around the country using the therapy. They're so helpful and know what it's like to face off with skeptical regular rheumys.

I asked my rheumy about AP.  This is what he told me, not my opinion--AP has been around for a very very long time (decades), and research has attempted to prove its efficacy since its inception.  For the people who respond to AP, it is usually because they have latent Lyme's disease or something in that class of diseases--in other words, something that would readily respond to antibiotics.  The research that has been done has been majorly flawed and never corroborated.  Evidently, there is a doctor in the DC area (where I reside) who "specializes" in AP.  It is my rheumy's opinion that this guy is not just a quack, but a swindler.  He tells everyone that comes to see him that they have RA (in fact, many do not). He prescribes them antiobiotics and follows them for a year.  If they get better, he proclaims them cured.  If they don't, he simply refers them on to someone else.  My rheumy got a referral from him, a young lady who had tendonitis in one wrist.  This AP guy told her she had RA and put her on AP for a year.  She got better after a year, but what he didn't tell her is that tendonitis resolves itself in one year, with no tx. 

That being said, my rheumy told me that he likes to keep an open mind and if I wanted to try AP, he would prescribe them.  I chose not to.  I'm not trying to be "down" on AP, but I'm a researcher and a firm believer in numbers to support these claims that AP is the cure.  I'm very distrustful of anything that claims to be a cure for diseases that are not even truly understood to begin with.  On the other hand, AP is probably less toxic to the body than many of the DMARDs we take.  If you can find a doctor to prescribe them, perhaps it can't hurt to try.

Elcamino

Sure it is indeed a legitimate treatment and sure it does work in many MANY scenarios.

But here's another thing, long term antibiotic chemotherapy can cause severe arthritis in varying areas of the body; tearing of ligaments; potentially lethal super infection; and inflammatory bowel disease as colitis, ulcers and ulcerative colitis.

What are we really looking at?  Several treatments that "can" cause a "possible" remission of RA and MCTD's.  DMARDs, TNFs and biologics do not even promise this nor does any medication in that matter.

I believe it's just another step in the latter that is a very crucial step indeed!  It is there just as any other, and it is there as another option.

**this is by the way...a very good conversation/debate**

the best to you both! rock on!

I have not based my conclusions regarding AP on one doctor's opinion.  I have thoroughly researched it myself; I have read some primary sources (professional journal articles).  There are very few studies that support the claims of AP and RA.  I have encountered numerous claims regarding AP on the internet (the roadback stuff), but those are simply testimonials.  There is very little based on real numbers from clinical trials.  Until that's available, I'm not willing to be the guinea pig. 

CaMama, my rheumy basically said the same thing your's did--he has prescribed AP for patients in the past who really wanted to try it.  It hasn't worked for any of them.   He wasn't completely down on AP--he specifically said that he was certainly open to the idea.  It has just been his experience that it doesn't work for most people.

Elcamino

hey mama,
whatcha' going to do with all the Enbrel? if you decide not to go on it....will they take it back?

you really like this Plaquenil eh? it's made improvements in your pain/joints etc...? yeah, i'm fishing for input!
i believe antibiotics work the best on RA and related arthritis' that were triggered by bacterial infections. that's my theory. for example: the Lymes bacteria triggered the AI disease....so when i was treated w/ antibiotics for RA after the Lymes was gone, i did well on them. big difference in pain levels. the only thing i wish antibiotics did was help slow down the progression of the disease like the TNFs.
but i feel AP really helps with arthritis symptoms. (so perhaps that's why some fail with AP...if the arthritis wasn't bacterial sequala, the probability of antibiotics working would be small to none). it's really all a fascinating theory.
best wishes Camama!

Hey Mikey... welcome to the site, I'm glad you found us.... We have quite the diverse group here, I'm sure you'll find a little bit of everything...if you have any questions, or just need to vent, please feel free! Duck

Erin, are you planning on starting plaquenil? I must have missed that post. CaMama is right--plaquenil can really irritate your lower GI system. It caused some very wicked cramping when I first started taking it. I learned to take it later in the day after a full meal. And by now (4 months), my body is probably used to it. In the beginning, though, I almost stopped taking it due to the cramping and D.

Elcamino

hey El, hey camama:

well, i don't know what's going to happen.  i see the GI doc on wednesday.  getting the promtheus test...and i guess discuss what's next or what to add in conjunction to everything.

i won't start anything until the test comes back, that i know.

so hopefully i'm just not @ a therapeutic level of Imuran & it'll be as simple as putting me up to 100mg Imuran/day.  i'de hate to start on something new all over again.  but i do need an antiinflammatory of some sort...anything. i need something beside prednisone, i mean how much of it can i possibly take?!!??!!

i know the Crohns will be an issue, and the bleeding will be an issue (happened on the cox2s and most nsaids)

well, we shall see!

he's a smart guy...i'm not worried.

Hey Mike...

I was very apprehensive when my rheumy suggested I start Enbrel. I was of course leery of all the side effects and with biologics still being relatively new, I was worried of the long term effects... However, I knew I wasn't getting any better being on all the meds that I was on at the time to try and help with the pain. My rheumy never suggested for me to start on Antibiotic Therapy... I didn't find out about that til I read it on this site...

From my personal experience, Enbrel has been a godsend to me. Within a short period of time, I noticed remarkable improvements in my mobility and stamina. Things that I always took for granted before, I could do again. I don't walk without a limp anymore... I go mountain biking with my husband now... I swim with my kids now.. and before I couldn't do any of that 'cause of my arthritis... And not to mention my psoriasis plaques have all but disappeared... I still get a stray plaque every now and then, but for the most part, they are gone. I don't have them on my back or torso like I used, I just have a couple around my hairline, and I think that is from stress more than anything.

Everyone is different. I know some people that the Enbrel didn't really work well for them... or it does for a short period of time...

What has your doc said? Did he/she recommend anything other than the Enbrel.? Does Antibiotic Protocol work for AS?

Hang in there, and let us know how you are doing... best wishes to you... Duck

Hi Mike, you mention that you have more problems with fatigue than anything else right now?  I can tell you that once I started Enbrel (5 months ago), the fatigue almost completely disappeared.  The effects were quite noticeable after about the 3rd weekly injection.  I didn't even realize how fatigued I was until the Enbrel kicked in.  Prior to that, all I wanted to do on my time off was sleep! 

Although enbrel has done great for the fatigue it has not taken care of my joints yet, but combining it with mtx may do the trick. 

Best of luck to you, and welcome to healingwell.

Elcamino

Erin,

Hi, You said you have Crohn's along with RA, I have Crohn's and Lupus.  I take Immuran and Plaquenil, my GI is fine with that combo.  The first couple of weeks with the Plaq. was rough on the gut (was also on Pred so it helped to keep it calm somewhat)  I have learned to take it with a full meal and break it into 2 doses - 1 pill after breakfast and 1 after dinner - it is the only way I can take it and not upset my gut.

I usually post at the Crohn's or Lupus but was checking out the arthritus site for some older posts.  Found it interesting that you have Crohn's and RA, I don't find many people that have both!

 

Yep, I did the Promethius test, it took me almost 3 months of the Immuran to feel like it kicked in.  It also took a bit of "finessing" to figure out the dosage that worked for me, I started at 150 mg of Immuran, it was too much, went down to 100 mg and got off Pred and was taking 400mg of Plaquenil, seemed to keep both diseases under control until I started feeling crappy with the Crohn's, flared and ended up in the hospital for a week, pumped with steroids and Entocort - LOVED that med, it worked along with finally figuring out the correct dosage of Immuran - 125 mg.

What dosage are you at with Immuran?  How long have you been on it? I know for some people it takes up to 6 months to feel better - that is what my GI told me.

With having Lupus and Crohns, I also don't have that many options of what I can take - Immuran, Entocort, and MTX are my options.  Have not done the MTX yet, since Immuran seems to be working well at this point - knock on wood, having a bit of a Lupus flare but coming out of that with an increased dose of Plaqunil.

I am also lucky that both my GI and Rheumy are very willing to work with each other and actually talk about what they each feel works for me with each other.  It is rare I am sure.

Good luck with your GI appt, keep me posted, I hope that they are willing to try some more options.