need link to dosage for AP

[terri9967]

My doctor needs more info on what is the dosage for starting AP therapy. If anyone can give me some links where I can print out reccommended dosages that would be wonderful.

thank you
Hugssss
Terri

[jeffn]

Terri - I just looked quickly over at RBF and under the Physicians Packet there is some talk of dosage for SD. They are noting the Harvard Protocol dosage which is 100mg of mino twice a day every day. That is the dosage I am on and there are others here on the board on this same dosage, others pulse dose on MWF. Others use different combos of antibiotics. There are many variations. I'll go out on a limb and say that I think if you are just talking mino no IVs etc the most common dosage is the Harvard Protocol. Some start with a smaller dosage and work up, I was able to begin with the full dose with no problems. I believe that my dosage is the same they give teens for acne.

[antonietta46]

Terri,

I take the same dose as Jeff 100mg 2x daily and I can actually tell you that another individual I know who also goes to the same doctor as myself & Jeff is also on the same dosage.

Antonietta

[steve201]

yep...100mgs x2 per day..I changed to 250 mgs x1 per day for tetracycline...


Steve

[terri9967]

Well yesterday was a good and a bad day for me. Had my appt with my family doc at 1045 as I was pulling outta the driveway the electric company showed up and shut me off. So until they get here today to turn it back on due to medical situation I have a extension cord to my neighbors garage. LOL redneck huh? lol

Anyhow..... I started to talk about AP with my doc and he already knew about it. He was telling me about one of his patients that was only 38 and had severe RA and he told my doc about Ap and gave him roadbacks website and he printed all the info out and read Dr Browns book and then has been in touch with Dr Sennot in Iowa!!! He started this guy on i.v AP. Now this man who was sick was totally stuck in bed from the RA, with in 9 months of starting AP he is up and about again!!!! So my doctor has a total of 3 people on AP right now and has 11 patients including me waiting for him to get a protocol setup!! We had a long talk about what issues he has in going full force with treatments for patients. he is doing research on the blood work that has to be done. He has the list that is on RBB and a good majority of the tests our labs here locally do not do them. So he wants to make sure he know exactly what he is doing before he starts being the main doc doing this treatment around here. I had told him that hey it might not work for everyone and as i said that he stopped me and said "well it has worked on everyone he has seen with his own eyes!" He was impress with the amount of research I had done and the information that I knew. Thank you Jeff and Steve. He did say however that I would have to do a washout of the cellcept I am on. I told him that I Know alot of people doing AP and still on their meds like cellcept. But he wants to follow the protocol exactly as Dr Sennot and Dr Brown have noted. so I told him ok no problem, I have nothing to lose and everything to gain at this point. He also explained to me that it will not fix the damage to my lungs, eyes, kidneys and brain but might just stop it from getting any worse.

I am so excited!! And was not surprised that he was researching AP as a treatment. My family doctor is the only person I trust 110% with my health. And is always trying to stay ontop of new treatments. I told him that once he starts a full protocol for his current patients not to be surprised if he doesnt get flooded with new patients. He said thats another reason he wants to make sure he has himself totally educated on AP before that happens.

Also told him how my RA specialist that he refered me to in Pittsburgh would not even discuss AP when I brought it up it was a simple and very firm NO. He said he knew that cause one of his 3 patients that he currently has on AP is her patient too. He said he feels kinda bad about stepping on her toes but also feels that if there is a chance to help the patient with this treatment that it is wrong of her to not atleast check it out. There are plenty of logs and journals from other doctors that have used AP and how it works on the patient. He said there is not a single doctor within 200 miles that is willing to do AP.

So my chart is on his desk with the other 10 people waiting to get started on AP!!!!! So hopefully soon I will be on the AP protocol and praying that it works for me as well as it has for so many other people.

Well I better get my freezer plugged back into the extension cord instead of this laptop. But wanted to share my news with you. Thank you again Steve and especially you Jeff for the all the wonderful information.

Hugsssss
Terri

[christine10]

Hi terri;
Print up the post I sent yesterday titled Lung Issues as ap does help enormously.I personally know two people ,one who has totally normal lungs and one who is 95% o.k..I have heard of many others.
Lynne Christine

[terri9967]

thank you Christine. I will be sure to print that out for my doctor. even if the doctors say ap won't work for lungs, guess it will be my turn to prove them wrong huh? lol

[jeffn]

Wow Terri sounds like you are in really good hands right in your backyard! Not only is your doc willing to look at AP but is into it - what are the chances of that. Great news. Hope you are able to begin soon and you get good results, as I have.

You might keep a log and bring us up to date from time to time if you are inclined.

[terri9967]

Yeah Jeff, I was actually thinking of doing that and suggested it to my doctor yesterday. And he really wants me to do that so that he can use my experience and results on AP for his medical journal and hopefully get other doctors to atleast consider AP.

[terri9967]

I think I forgot to mention that my doc also knew all about the herxing.. I was really shocked just how much he has educated himself lately. I guess it because he is getting so many people that want to do AP. But he warned me that when and if I herx that my symptoms will be 100 times worse then I have ever felt before and I am going to want to stop treatment. But he said I have to vow that I will not give up the AP treatment and to push through the herx. He knows how hard it will be for me as he has watched me over the past 3 or 4 years go from bad to sitting in his office in tears shaking uncontrollably in pain and how swelled up my body gets. I told him I knew about the herxing and that it was a good sign that the treatment was attacking the problem and working. Just wanted to share that with you as well. I am just so excited that I dont have to try to come up with money and fly to Iowa. I can have it done right here and my doc is only 1 mile down the road from me and he said he will set up the i.v treatments to be done right in my home!!!! I may not ever have to drive almost 3 hours to a doctors appt again. Or atleast I can hope anyway!!

Hugsssss from a very hopefull
Terri

[jeffn]

Terri you may be lucky in that from what I read most SD people don't herx. I did some but not really all that bad particularly when compared to SD pain. I think I might have mentioned it when we spoke, I did have a rash kind of thing that was a pain but I had been itchie with SD this was just different. In addition I had some hip and knee pain that lasted about three months. I think that was die off that collects in the joints. Again kind of a pain but not more severe than anything that I had already been through with the SD. At this point my SD pain was lessening so this was kind of a continuation of discomfort. I did feel after a bit that it was change for the good. I would not really let myself believe that I actually might beat the SD until I was about nine months in. I was feeling better all the time but still did not want to jinx things.

I guess the only thing that I would tell you now is to schedule a dental appointment for three months from now for a cleaning. You will want to get the brown crud cleaned off - again I think it is die off because it comes right off and after four months that was not an issue either and it has not reappeared.

Good luck - get better.

[christine10]

Hi terri;
Did you get to read the sites I mentioned.Great stuff,no?My girlfriend Dolores who used to post on the SD foundation site 5 years ago had terrible lungs.She sent me an e-mail yesterday and said she had just received the great news that her lungs were 100%.We were both bouncing off the wall with happiness.She started the regular AP of 200mg minocin a day and once her skin improved she moved on to the Marshall protocol that uses only tiny amounts of 3 different antibiotics.She did not herx on 200mg mino but had violent herxing on low dose.So did I,that is just something one has to ride out

[terri9967]

Yes, Christine I read them. Wonderful news for me. I would love to not have to be on inhalers, nubulizers and oxygen!!!!!!

I am ready for it if I do herx, and if I dont that will be wonderful as well.

I am wondering ................. My doc does the i.v treatment that Dr sennot does and as mentioned in Dr Browns book, I think. I want to know if after the 5 days of i.v I think then its i.v once a month right? NO oral pills??

[christine10]

Hi Terrie;
For the first 5 years of my AP journey I used minocin 200mg a day and in the 3rd,fourth and fifth year I alternated with oral clindamycin.To tell you the truth AP was not doing much for me because I did not know I had Celiac which was causing the SD.When I found my great holistic doctor she told me we had to find the reason I got SD.She had me tested for a zillion foods,mold etc etc.She said I very likely had Celiac as 90% of all people with chronic diseases have it.Once I got that problem fixed AP kicked in and I was in remission in 18 months.She put me on clindamycin I.V s for a week every second month.I really don't know if they helped so I stopped after a few months and just took the oral along with the mino and zithromax.The latter was only one capsule every 15 days as zith stays in the body for 14 days.I strongly suggest you look for the reason you got the SD wich is usually Lyme or celiac because if your immune system is busy fighting something else it can't fight off the SD

[mkbeeliever]

Hi all!

I see that most of you are on 100mg 2x a day. My question is, how long did it take you to get up to that dose? My mom is on 50mg 2 x per day right now. She started on 50 mg 1 x per day back in June. She feels nauseous every morning and throughout the day and I'm wondering if we need to up her dose or not.

Background: My mom suffered stage 5 renal failure back on Easter Sunday and is on dialysis 3 x a week. So, we've got a lot going on with her and I'm just trying to figure out this nausea issue. I am thinking it's the antibiotic.

Thanks,
Michelle