So my wonderful new primary, after the great barium debacle, agreed to start me on AP therapy. I used the advantage of the big screwup and just asked her. She went through the roadback.org site and was surprised at the whole thing, never heard of it. The best part is the patient insert from the pharmacy under Other Uses says: This drug may also be used to treat rheumatoid arthritis. Wow, even the pharmacists know about it. And I got a bill for 00 for the CT Scan debacle, they forgot to call in for the precertification along with forgetting to tell me I needed to drink barium first. This should be fun to see how they handle an 00 screw up - I probably would have ended up paying about .00 as my co-pay. Wish me luck on AP. Good luckHope it all goes well for you
Good luck to you! It really is a "roadback" to good health. I hope you have the great results I've had with AP.
We're here for you!
Becky
I hope you see results very quickly!
Good Luck!!! Hope this works for ya soonRockin'! Good luck with the AP!!!
What's AP? I'm just starting out with this disease so I'm sorry if I sound, like, DUHHHHH! Gimpy can you tell us what the side effects are. How long did it take to work for you?
ThinkThin, I don't even know if AP is working for me yet. When I started it
LuLu - AP stands for antibiotic protocol. I started at the website www.roadback.org. Longterm antibiotic treatment under the premise that we suffer from an infection of some sort. Gimp - I am on the Harvard Protocol - 100 mg Minocin 2x per day - but you still think I should be on doxcycline because of the lupus? I just took my third one. 3.00 for one month's script, but with insurance was .00. I about fell over on that one. Thank you everybody. About 2 years ago I was begging my primary to give me antibiotics because I have noticed that the only time I get any relief is after a course of antibiotics, which for me is maybe once every 3-4 years after I finally contract a sinus infection. I still think you are your best doctor and instinctively you can find what will heal you. Take care and lots of group hugs back to everyone. Cathy Hugs and GO Girl! Lulu - I'm on AP and have been from almost day one. I LOVE it. I got my life back. As GoGo says, AP is for people that want to manage there own health care. It's hard to find docs willing to do this for you. I'm on my 10th and eventually had to fly out of state to get a top dog to treat me. It was soooooo worth it. Cathy - anybody - somebody tell me why Minocin's price went up 350% in the first half of '06 alone. On an off patent drug? And why was there such a back log in getting it? I'd seen posts of delay up to a month even getting it from Canada. So, the 0+ cost...I'm just guessing here...but they know. :-) Pip Herxing is an immune system reaction to the toxins that are released when large amounts of pathogens are being killed off by the antibiotic. It occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. In other words, it's a NASTY flare! Thanks everybody. My primary said to keep in close touch and not to be afraid of cutting back if I needed to. This sounds like a vaccination - give a little of the disease to you to strengthen your immune system to fight it off if you are exposed to it. Or homeopathic for that matter. Just got another denied bill for 2 for the CT scan reading doctor. This ought to be fun - total bill so far ,400. And I have total, excellent coverage and my card has the pre-cert # right on it and they have a copy of it. Geez, this might be a huge battle. Pip - if I said that the drug price went up because the price of a barrel of oil went up so high, would that answer your question? LOL It couldn't be so they can give big bonuses to the CEO and Boards of the company that makes the drug, right? I think the answer might be more in the fact Amgen also makes Enbrel and that 'interferes' with their business model. If people can't afford the meds they're going to take what they can to take away the pain. Biologics. I'm with GoGo here - you need to post. I know Lupus people are really sensitive to the meds...and I think there is some sort of titre for 'lupus levels'. That's why Karin was on Zith. Wish she was here to jump in. Pip Okay, I am fine. Haven't had anything happen at all, haven't felt any changes, nothing. Maybe a little woozie for about 20 minutes the past two afternoons in a row, but that's it. I feel pretty good, but I was feeling good going in. I knew I had about a ten-day period of time before the next flare starts up. It's due any moment now, the next party my disease decides to hold. But Sunday, the day before I started, I woke up in incredible low back pain. That evening I was helping my husband load the dishwasher and leaned over and collapsed right to the floor. I lost complete use of both my legs, but it came right back. My primary wasn't happy about that one - we are going to see if it happens again, and if its the osteo and say, a fracture, there isn't anything that can be done anyhow. I really like her alot, doesn't get all worked up over some of this, but is aggressive when she needs to be. I am a little better today, but this back pain has been unbelievable excruciating, and I never have low back pain. Ultrams haven't touched this pain. So, Day 3 and I still alive, but a winged duck. Take care Cathy
I was in clinical remission on MTX and plaquenil and I still take those
drugs ("remission"? Ha! How can I be in remission when I still have pain
and limitations?). It took me several months to get up to my max dose of
Minocin, and I only reduce my MTX by 2.5mg every six weeks (or more,
depending on how I feel and what my blood tests show). I herx every time
I change my meds and then I wait until 2 weeks after that settles down to
make another small change. AP therapy is a long term commitment and
not for the impatient! I've been advised to wean on and off the various
medications really slowly so that's what I'm doing. I think it can take a lot
longer to kick in when you're doing it the way I am. There's a possibility
the MTX interferes with the Minocin, but like with a lot of RA medications
the actual mechanism that makes the drugs work is unknown. I do know
I'm not the only person that's approached it this way so I'm hopeful! I'm
still in clinical "remission".
That said, I know AP works for a lot of people, and some of them are on
this board!
Side effects...hmmm.....there's herxing, which is considered a good thing,
but still a side effect. You can get yeast infections if you don't take
enough probiotics. Some people have to have a yeast control diet. It's
possible to get weird skin discolourations over time, but the risk of this
can be reduced by avoiding the sun or increasing vitamin C or both. I
read on remedyfind.com one guy's eyes turned grey, but he continued the
AP because other than that he felt great! You can also (very rarely) get
drug induced lupus, but it goes away if you discontinue the therapy. I
think it might also tax the kidney's a bit. Expired Minocin can really
damage your kidneys, so it's important to check expiry dates.
I think Cathy would be on the Harvard Protocol, which is 100mg Minocin
twice a day, because that's the protocol used for scleroderma, which she
has. I'm on the Brown Protocol, which is pulsing Minocin MWF (I'm
currently taking 150mg, but yesterday I bumped it up to 200).
Chances of success are a lot better if you're well informed, so anyone
considering this treatment should read The New Arthritis Breakthrough
and also look around the road back website (www.roadback.org)
tetracycline antibiotic, or even zithromax, but not Minocin. Howvever, I'm
not that well versed on that since so far all I've used is Minocin. That would
be a good question for the RoadBack bulliten board. If it does aggravate or
lead to more lupus-like symptoms, stopping the Minocin should resolve the
problem
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