I have a question for those who have been on AP therapy for a while. I just started this week because all others DMARD's have failed me in this flare up
When I was a teenager, I had constant sinus infections. I have also had my RA since I was about 8 years old (it was diagnosed as JRA when I was a late teenager and now since I am 36 and no longer a juvenile, the Dr. just calls it RA. RA runs rampant in my family and mine is due to genes). After years of antibiotics, I finally had a sinus surgery. Using the scopes (which were brand new at the time), the surgeon found that I had a super bacteria in one of my sinus that had been feeding and growning off all the antibiotics I had been taking. I usually had a ten day treatment and then would need another bout of antibotics with one to two weeks. This had gone on for over a year.
The surgeon gave my Mom two options to get rid of the bacteria. They could keep me in the hospital and give me super IV antibiotics where they would have to check my blood every couple of hours to make sure it wasn't damaging anything else. Or, I could go a couple of months without any antibiotics and see if the bacteria disappeared without food.
Obviously, we chose the no antibiotics route (although my Mom kind of regrets that now as she worries that bacteria is still lurking some where in me causing problems eventhough I was sick before I got that diagnosed). When I was checked a couple of months later, the bacteria was not visable in my sinuses.
I got to thinking yesterday, since the AP therapy is a constant antibiotic, could a super bacteria grow from this therapy? That is probably a far reaching thought. But, I was wondering what other peoples experiences are. Thanks for any sharing.
Jennifer
Wow, never heard of that. What I do know (my understanding) about the class of antibiotics used for AP is that it destroys the protein bacteria eats, so it keeps it from multiplying.Jennifer - all I know is that when I proposed AP to my primary two months ago, she looked at the Road Back site, and came back with a why not? You are 51, suffering, what difference does it make if you become resistant to THIS CERTAIN ANTIBIOTIC. She obviously had read the Doctor's protocols and ordered up the "Harvard" method for me. I don't know about the super bacterial part, but I am out of choices at this point in my life. A great topic, and I hope others (especially ones not on AP) will weigh in. Take care Cathy
You won't develop a super bug because of how the beasties are killed. We're going after the cell wall deficient myco's and the ABX works by disabling a protein they need to reproduce.
My gut reaction tho is that you will get 'infections' like a re-activated sinus infection as the beasties struggle to stay alive. I had that as my 6 month herx - a NASTY case of pneumonia - because my lungs were really compromised prior to starting AP. What the docs then do is treat the 'new' infection and when that's done they put you back on the Minocin. So...just typing out loud here...if you do have some sort of resistant strain... and your mom is right...and it reactivates...the doc will culture it...figure out how to kill it...and then after its all over...you should feel a LOT better. I felt so much better when the lung thing was over. But for me...it's not totally over...my lungs were my worst part and I know I'll get hit there again. I'm just ready for them! :-)
Please get the book "The New Arthritis Breakthrough" by Henry Scammell so you can get a more in depth view of how the process works. I know there are case histories in there that sound a lot like what you describe.
Also, please, please, please lurk at the forum on the Roadback! There is so much to learn about how to make this work there. It's like reading Greek at first, but you really start to understand and learn things to help you get well. It is two steps forward and one step back until you step into the light and go "IT WORKS". Until that happens, until you get your "Ah-ha" moment, you're operating on faith!
Do you mind sharing your dosage and what days your taking it?
Hugs on this first step! You'll make it!
Pip
I am taking 100 mg twice a day every day.
Ok, you're on what's known as the "Harvard Protocol". It is theorized that this level has more immunomodulatory effects than the pulsing dose (MWF 200 mgs, 1 AM, 1 PM) developed by Dr. Brown. You're still killing bugs but not as much as if you went to the pulsing protocol. This can be really good if you have been on all the other meds and your system has been supressed for a long time. When you are feeling a lot better and drop down to the pulsing dose for maintainence - you will 'herx' all over again - but it will be a lot more minor than what you're going into right now.
Do you know about 'herxing'? Did your doctor tell you to cut back the dose if you herx too badly in the beginning?
Hugs,
Pip
I read some of the protocal on the roadback web site and saw about the herxing. This is new to both my Dr. and myself. Once I was pulled of the orencia, he didn't have any traditional medicines to offer me but to go back on humaria which didn't do anything. I have read what you all have posted about AP therapy and how it has helped some of you. I have also noticed I do a little bit better when I am taking antibiotics for an infection. Since the Dr. & I had nothing else to try, we decided to go for it.I think you're going to be amazed a year down the road when you look back at everything and see how much better you feel! I did not know if I'd ever feel 'normal' again - and I do!
The one regret I have is that I didn't journal in the beginning. I figured since I was so newly diagnosed I'd just all of a sudden be 'me' and it took a lot for me to realize that the disease process is a process and there are ups and downs. I wish I could look back and for sure see when X happened or Y happened. Does that make sense? For example when they were trying to come up with a diagnosis I was stupified with pain in only a few months so much so I had to take my husband to appointments and have him bite the MD's so I'd get some help. During that time some doc mentioned the thyroid and I saw some tests and knew to 'follow that' but I didn't. Now - 13 months later - I need that info and can't verify a lot of it. So, please journal - you'll love yourself for it later. :-)
Keep hanging at the Roadback. You'll get so much help and encouragement and advice to help yourself AND your doc.
And if you need me - I'm here!
Pip
It's really important to know about herxing when on AP. I truly believe that many RDs have tried AP on their patients without really researching it, and as soon as someone herxed, everyone thought it wasn't working. A people would herx bad because they all start at such a high dose!
If your taking Minocin/ Minocycline or Doxycycline you won't build resistance to these antibiotics. Its very important to take a pro-biotic timed away from the antibiotic to prevent yeast problems. I took Minocin for 3.5 years with great success. Also helps to reduce food that feed yeast like breads, sugars and pasta.
You also need to adjust the dose, one size does not fit all. I did best on 100mg Minocin mon-fri and weekends off.
Gary
Darn!
Why do I always forget the probiotics! You'd think I'd learn!
Hi Higgy - are you new?
Pip
No, not new. I used to visit here often, first time about 8 years ago. I have a journal here as well concerning the AP.
I don't come here much since the site was sold and allowed to decline. Who ever owns it doesn't work on it, they seem to use it just to collect advertising revenue.
There are journals here???
Pip
Pip. I've read people's personal stories here. I foundthem when I was looking for success stories of AP, so Higgy, I may have already read yours. Welcome back! I'm glad you still pop in from time to time.