has any body been on this?
I will ask my doc about it he may say no but I may ask him anyways I have read some people have had good results I know or at least read that I can not be on mTX because of ulcerative colitis.
all these meds still scare me but arthritis scares me even more. The doc has me on paxil 12.5 because I was crying at my last visit and he was really worried about my mood.
well have a good Thanksgiving everyone hope your all ok today.
Hi Mark1-I started the Minocin AP about 2 months ago. Though I have seen no results yet many, many people have become symptom free using this protocol.
Due to swelling I am also using traditional meds as Minocin works on the area and cannot if there is swelling.
The recommended dose is 200mg-day but I am only on 50mg-day due to herxing.
In case you don't have it here is the site for great info regarding AP.
Take care and hope it works for you,
Mark, don't know anything about the treatment. But that was a fabulous link that Bonny put up. I've been interested in reading something about this for awhile.
Mark, hang in there. I've cried a lot when at the doctors. The prednisone especially makes me do that. At least your doctor is putting you on something that helps. Keep in mind that it may take a couple of weeks before the Paxil helps and make sure that you don't miss doses. If you have any problems taking it, they can switch you to something else.
I know you are in a hard spot here. Chrohn's is one tough disease and I can understand how upset you are about the possibility of another one. I'm there. I get how deceptive it makes life feel.
But we have to choose to go on. Things will get better. They will find something that helps and eventually you will learn how to control many of the problems that this disease presents.
Sorry to be correcting you, but Crohn's and Ulcerative Colitis are two different unique diseases. :) I only pipe in because Justin has Crohn's, and they are constantly screening him for Ulcerative Colitis. From my understanding each is very painful and umm "annoying" to say the least. But each is a little different in the pains and the management.
Mark I'm so sorry you have UC. GI diseases are AWFUL. :( What medication do you take for it? Perhaps I can give a little insight with what we know of the meds. Just a thought.
Best wishes,
Katie
Sorry that I got it wrong. But I know that both are horrible not only in pain but in dealing with life. I really feel for anyone that has to deal with these.
Katie does have a wonderful perspective on all of this. And, a good heart too. She makes me laugh even when the worst things are happening.
A lot of people hear the different GI diseases, and lump them all into one. They are all very complicated. It took me at least 6 months to wrap my head around Crohn's, and I only have a base knowldge of the rest.
It's my joints that are giving me hell now... god .....
Awwww :( I'm sorry to hear that. My house is full of pain. LoL Just out of curiosity...are they positive that it's RA? With inflammatory diseases like UC and Crohn's, etc etc, it doesn't have to JUST affect your intestines(etc). Justin has regular swelling in his fingers, which is actually the Crohn's reacting in odd places. Perhaps your UC is not as under control as it seems, just working in other places? Just a thought.
I was diagnosed with very aggressive RA in March 2004. My numbers were off the roof. The rhuemy had me on MTX and the rest of the conventional protocol. I was throwing up and hardly could get out of bed. The rhuemy said basically welcome to your new life. I don't think so!! I was only 44 at the time.
I discovered the roadback.org site and thought why not. My rhuemy thought it was hogwash and refused to give me a script. So I went to the roadback site for a doctor recommendation.
The first month was rough. I "herxed" terribly and felt horrible. A lot of fatigue and pain. But researching and reading Henry Schmall's book, I was well prepared for it. It only boosted my confidence in the antibiotic protocol. But little month by month, the pain lessened. Before, I had a handicap sign and needed it badly. I don't have that anymore.
My pain is mostly gone. I am back to my old self. I will never take my health for granted again. I also learned that no one will advocate for your health like yourself.
No matter how long you have had RA, this should be your treatment. It's isn't the easy way out by no means. But it can put this nasty disease in remission. Thank God I found a doctor who has treated RA this way for 15 years. No, he isn't a rheumy he's a family praticitioner.
It really does work!!!
Becky
That is great news Becky! It gives me hope to read your story. I hope that anyone reading your post checks out the RBF site and gives AP a chance as there is nothing to lose but this disease and virtually no side effects.
Take care,
Okay, I've been reading this and in the first two years of my treatment with RA, the doctors kept giving me a lot of antibiotics. It was one of the first methods the Rheumy tried with me along with the normal medications. Almost any infection I have has to be treated with this particular family of antibiotics as I am allergic to both penacillin and sulfa.
How or does this relate? My symptoms in my skin (where the vasculitis exists) does improve significantly after being on a run of antibiotics. But bounces right back to its former condition.
I actually think this might work for some people, but what happens if you've been treated for RA for over 6 years, not to mention the high level of antiobiotics that I was only for previsous inflammatory conditions.
Hi Deanna:
I don't know as much about the specifics as the folks at the roadback.org forum. Here is what I've been on:
Minocin (name brand is important not generic) 100 mgs. twice a day Mon. Wed. Fri.
Cleocin (name brand) 300 mgs. 4 times a day on Tuesdays.
Like I said in my previous post, especially the first full month I was very very sick but I stuck it out. I was sleeping 15-20 hours a day. I hurt all over. It only reinforced my belief that the antibiotics were indeed killing the microplasma and the dead microplasma is what makes you sick.
It is not for the faint of heart. Some have had to cut back on the dosage and start at 50 mgs. I have heard it has taken some months to feel anything positive.
There are people that have started the AP protocol who have had RA for 10, 20 or more years. It will not reverse joint damage but it will stop the progression of RA.
I strongly feel the biologics and other RA drugs just mask the disease. They may make you feel better, sometimes for years, but I do feel the RA is still there ready to rear it's ugly head.
I also question the longterm effects of the regular RA drugs. How long has Remicide and Humera been around. Methotrexate is a chemo drug. I don't think it was ever intended for long term use.
I just know what this has done for me and if I can help one other person to recover from this awful disease it will be worth it.
Get the book, check out www.roadback.org. Knowledge is a powerful thing.
Just to show you how powerful this internet is, I started having a lot of trouble with my legs at night. My legs would want to move and kick and it was really annoying plus hard to sleep. Restless Leg Syndrome. My doctor wanted to put me on some panic attack drugs. I went to the internet and asked on a board if anyone had this with their RA. They told me to sleep with a bar of soap at the end of my bed. I thought they were nuts. It has worked !!! So you never know.
Becky
I would be scared to death to go off my RA meds. I miss a dose and I can tell immediately And, I cannot go through being sicker than I am right now to try this routine.
I don't know that I can handle being on that level of antibiotics. I've been on some powerful ones in the past for different things for long periods of time.
I already can't take the biologics, unless the doc changes his mind.
This treatment might work for others and it's basic premise makes sense to me. But I'm not sure I want to try this path right now.
What happens to people who need these antiobiotics for something in the future? They might not work. I need everyone I can take for possible infections.
I just need more proof than this.
actually the doc so far does not think its RA just because my bloodwork is so very negative he said your sed rate your c-rp and everything else right now tells me you do dot have it but my pain and some other symptoms are very arthritis like...
I did get stiffness in my hand but just for like 30 seconds or so but it can hurt different joints and hands and bigger joints.. if its not ra.. its as bad to me....
it could be UC related.... either way its hurting my body and scares me to death.
I am trying to be strong but its hard.... very hard..
I am trying to take each day one at a time
IF it is UC related arthritis they will have to put me on RA drugs well he has me on prednisone so far and paxil
got to see a GI and A RD at the hospital The rd dept is going to check me over and probably do a few x rays or mri so they can see whats going on...
I just gotta try and stay positive hard as that is...
gosh I am still scared to death of this disease I really am.
I hope everyone is feeling ok
mark
Mark, I don't know what your docs use as UC treatment, but I know that many Crohn's treatments are RA treatments as well - that is, all the injectable ones. My guess is because they upset the tummy less. If you're honestly that scared of RA, just try to hope that it's the UC reacting in other places. At least it's not a new disease, and you know the drill. Same meds, that doesn't change. Ya know? I hope you get whatever good news you're after!!Mark, I completely understand your fear. Katie's so right about it possibly being just an extension of what you already have. But even if it is not, it isn't the end of the world.
Right now, I have 5 autoimmune diseases plus various other not so nice problems. I'm scared too about my future, worried about having nerve damage, MS or Parkinson's. Or, maybe it's just my RA gone crazy. But my life does not stop. I have dreams that I keep holding onto. I have two kids that still need me in this world, a couple of nieces that think I'm pretty great, a little brother and sister that still need occassional advice, my friends here. I still want to write that exceptional novel (actually I have about 200 books I've listed as wanting to write.
I am scared. I am in pain. But I just can't quit. They are going to have to take me out fighting. Look deep in yourself and find that part of you. I'm sure you have it to or you wouldn't have bothered coming here. There is hope even when we are in the hole of despair. Pain takes us there. Fear, too. But another hand, reaching out to you, can bring you the comfort that there is hope. Things will get better.
It sounds like you have gotten the attention of some doctors that want to help you. Realize you must keep fighting.
Come here and we will share your tears. Rant, rave and vent. We all do. Just realize you are not really alone. In fact, I'm pretty sure it's crowded in here.
Another very good website is www.rheumaticsupport.net
Check it out everyone, you have nothing to lose, except maybe some of your pain.
Deanna, to answer some of your questions, the Ap does not use a high level of antibiotics, just the opposite - it is very low dose, long term use. Some take it daily, some only MWF, from 50mg, which is a very small amount, to no more than 200 mg daily. As for building up resistance to these antibiotics, the type used (tetracycline family) is well known for not causing resistance. If a person needs antibiotics, there are many others that can be used, often in conjunction with the AP. All the best, Pat