Antibiotic protocol

Has anyone out there had experience with monocycline treatment, if so what have your results been? The testimonies I have read are amazing. If this is so good why aren't all doctors using it? All comments welcome.

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Not all doctors think it works, Mine is a scleroderma specialist and he does not use it. But I have notice alot of people toward the West of the USA seem to have it done more then say in the East. Even though I know some that have done it as well in the East.

a good person to talk with is Cubby, Evan or JeffN

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I guess if you look at all the meds different people are on there are almost as many opinions of what we should take as there SD sufferers. There are many of us on AP here in the Northeast US as one of the proponents of antibioitc protocol is in Boston. But on the boards there are people from all over the US on AP. Antibiotic treatment for auto immune disease has been around at least since the 1940s so it is not new by any stretch. I have been on minocycline since Jan. '07 and have most of my life back. I am VERY pleased with my result. I have not been on any other SD med other than prilosec. My Rheumy (the Doc in Boston) prescribed mino but my GP was very open to it and had I not found a Rheumy that used AP he would have worked with me on it. I am on my third Rheumy, the first was not a good experience for me and the seconddid not use AP but said he would discuss it with me when I came back to see him in five months. I really did not want to give my SD another five months head start so I found another Doc. The second doc was very good but did not use AP so I moved on. I ran accross the Henry Scammell book about SD and antibiotics and it was the first piece of info about SD that gave me hope. The treatment seems so low impact compared to other SD meds that
it seemed to be a great place to start. I am very glad I did. I am on the same dosage of mino they give teenagers for acne. I have been in contact with many people who suffer from SD and are on AP and my take is that it does help many of us. I think the earlier in the process the better but there are people that have had SD many years and see improvement on AP. Will it work for everyone? Probably not but there do not to seem be too many absolutes with SD treatments so for me it was worth the shot and AP can be used with many other courses of treatment. As why all rheumies don't use it there is a very good story about an Austrialian Doctor that develped an antibiotic treatment for stomach ulcers and was vilified by his peers. Presently approximately 80% of stomach ulcers are treated with antibiotics so in time he was proven correct. This took place in the 1980s, I don't think all doctors (like the rest of the populace) are necessarily free thinkers and it takes time for people to come around to different ideas. In addition I don't think there will be any big trials by drug companies as Minocycline has been around forever and is available in generic form so there is no big money in mino for the drug companies. Thats my black hellicopter theory anyway.

If you have any questions please feel free to pm me. I am so happy I came accross the Scammell book and began AP.

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Thanks for all the information on AP. I too have read the book by Scammell and was encouraged. Getting a doctor to administer is another thing entirely. My rheumy wants no part of it and there are no doctors in my area that are recommended by the Road Back Foundation. I am about a year and a half into this disease and I don't want to lose any more time. My symptoms are manifesting at a faster rate and time is of the essence. How does your regular doctor know how much to prescribe? Is there a set dosage?

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Ceasport - There are many different protocols for AP. Some docs use mino with IV antibiotics and different combinations of antibiotics as you probably know from your time on RBF. I am on what is descibed in the Scammell book as the Harvard Protocol as that is where my doc is and 100mg of mino twice a day - seven days a week is his protocol. Others use a pulse dose of mino M-W-F with different dosages. I have been strictly on the oral dosage. Sometimes people on the Harvard Protocol start with a lesser dosage of mino and work up.

How is your GP he may be open to AP have you checked with him? As I noted in my other post my GP was fine with it. I know several others on mino who are on AP but do not get it from a Rheumy.

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Hello. I have just recently learned about AP through this website actually and am becoming increasingly interested in the possibility of it for myself. I am not tolerating my recent meds very well and am very frustrated with my quality of life because of it. I am curious to know however, does anyone what effect, if any, AP treatment has on pulmonary fibrosis? SD has led to scarring of my lungs along with all the other symptoms and I keep reading that AP treatment is good for the aching, the skin, the tiredness etc, but nothing else really. So I'd like to know more about what else can it help or if I would still probably have to keep taking the meds I'm on now too.

Jas

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Jasminne - Ultimately what meds you take would be up to you and your doc. For futher info though there are a couple of links on my home page here that you might try asking about AP and your lung involvement there. I have corresponded with someone with some sort of pulmonary issue and started mino this past spring and was able to stop taking prednisone this past week. I do not know if her lung condition was similar to yours or not. I do not have lung involvement, My largest internal issue was esophageal and that has improved. My only SD related issue that has not improved is the Raynauds in my hands but we will see what fall weather brings this year. My impression from what I read and people I have corresponded with is that AP is beneficial for many more issues than the three you listed. It has been for me. Your results may vary.

Ceastport - I see from your profile that you are not all that far from Boston, thats where I go. My doc is at Beth Israel. I only go once a year to see him presently.
I went every six months for the first few visits and then quickly "graduated" to once a year. I see my GP locally every four months or so just so I can keep him up to speed with me. He is very knowledgable and is familiar with SD, He was actually the one who first told me I had a connective tissue disease.

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There is a lot to know about AP. Most of it can be found at www.roadback.org and by asking questions at www.rbfbb.org. Additional testimonials can be found at www.rheumatic.org.

There was a seriously flawed study that was done in 2004 in Texas that concluded that AP was not an effective treatment for SD. People on the roadback foundation have refuted the study by pointing out a number of flaws that make the study completely unreliable. They have done their own surveys and smaller scientific studies. However the 2004 study was paid for by drug companies and the small studies the roadback foundation has done were paid for out of their own meager resources.

Everyone has to make up their own mind about why this treatment has not been mainstreamed by Rheumatologists everywhere. I can say for myself, I have seen it work first hand.

IF YOUR DOCTOR IS NOT OFFERING YOU A TREATMENT THAT IS WORKING, WORKING WHY IN THE WORLD WOULD THEY NOT OFFER YOUR AP.

AP is not a miracle cure. It takes time, lots of time before someone sick with SD will see results. However, it is relatively inexpensive and has relatively few side effects and can be used in conjunction with other treatments.

I would encourage everyone who has SD to seriously consider AP.

If anyone wants to email me directly I am at jack.g.clifford@cox.net.

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For Jas,

read the testimonials on www.rheumatic.org and www.roadback.org. I am pretty sure there are some people on AP who used to have pulmonary fibrosis and are better now.

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Thanks for all the help, you are a wealth of information. I can't tell you how much I appreciate it. Do you mind sharing the name of your doctor at Beth Israel? I might just wind up there. I have a lead to a doctor from the Road Back Foundation. His website states that he is on the good doctor list from Road Back but I e-mailed him and in the subject line I put in AP treatment for scleroderma patients. He e-mailed me back asking me to call next week and explain what I meant by AP treatment. That was a little scary. I will call on Monday but I am not going to expect too much. That is why I may just take the trip to Boston and get started. I am seeing my Internist on Friday and will ask her if she would follow up on it. Does your family practitioner write the prescriptions for you or do they come from Beth Israel?

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I used minocycline in 2000 early after my diagnosis. Dr. Trentham in MA is an advocate of the therapy and I went to him along with my local rhematologist. When I realized that so many rhematologists disagreed on the best RX for scleroderma my research led me to try this therapy. Within a short time, my skin started to soften and some of my symptoms abated. This was 6 mos after I was diagnosed and my symptoms prior had been increasing in intensity eg. Hard skin, itching, pain, fatigue and GI. My guess is there is no motivation for a large scale pharmaceutical study to validate the efficacy of such an inexpensive and widely available drug. If what you are doing isn't working why not try it?

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Ceastport - I PMd you the contact info. I get my mino perscription from my Rheumy in Boston. Prior to going to Beth Israel I had asked my GP about working with me on nan AP program and he was open to it so I could have gotten it from him. He just said to get him more info about AP and that is available online from Road Back Foundation. I called for an appointment and had the opportunity to go to Beth Israel quickly so I went up there. If there had been much of a wait i would have just started with my GP.

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I have been on AP for 1 1/2 years, I love it !!!! I feel so much better than I did, I just take the minocin 2 @ day 100 mg. its a pretty easy medication, it does not have the side effects that so many meds that rumy use for SD
I believe it has played a small part in no ulcers on my fingers, but I also get Botox injections yearly, so I cant really prove that AP is responsible for helping my Raynauds, The AP is a treatment that I can live with very easy, My dermatoligist put me on it!

Nico2

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Please read my story under REMISSION which I wrote in June. I will be on the Minocin (brand name for Minocyclene) for close to 4 years. I am almost in remission. I know about 30 people taking Minocin/Minocyclene. Some are taking it with nothing else (100 mg 2 x a day), some are taking it with Cellcept. I am taking it with Photopheresis. Everyone is getting better and some are in full remission.

Please read my story on this board and if you have questions, e-mail me at cubbymikey@aol.com.

I don't get on here enough to answer private messages.

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JASMINE: My friend has a 19 year old daughter who developed scleroderma along with pulmonary fibrosis. The AP solved her lung problems. If you need more info, send me an e-mail and I will give you info to contact her.

cubbymikey@aol.com

I don't get on here enough to respond to private e-mails.

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I researched and compared the usual drug treatments for SD and the AP. The published medical articles I independently found on the drugs lead me to doubt their effectiveness, and the side effects were a grave concern. I opted for AP and have had immediate sustained results reversing my symptoms over the last five weeks. I feel better, have more energy, my pain is gone, my skin is more normal, and other symptoms have stopped completely or are less intense. The AP has not given me a single side-effect. I feel ilke I'm getting my life back, a little more every day.

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For all of you who want to know if AP works:

Yes, read the testimonials mentioned above. I have read every word of every one of them that have to do with SD. I recently printed out 78 pages of them to read while I was going to and coming from my latest trip to Mayo. There were 40 of these testimonials going back to around 1995, if I recall, and as current as this summer. There were numerous folks who have or had lung issues. Read about it yourself and see for yourself how they have improved. Some folks have improved very quickly and others took a good 2 yrs to claim "remission” – some 6 yrs." Most of these testimonials have email addresses and phone numbers so you are invited to contact folks that have or had similar problems like you, or perhaps the time span between dx and start of AP is similar. So you can see how they faired on the treatment. One thing is very very clear, they have ALL gotten better. Is this only a unique subset of SD folks who just happened to have good results with AP? No, that is very unlikely. They had and continue to have good results with AP because for the most part they started it before it was too late. I can also easily think of about 20 other SD folks whose testimonials I haven’t read or haven’t posted one yet (as I have not). Never the less, they are ALL also doing great on AP.

As one person mentioned, the Rheumys … “didn’t expect me to get better and want the baselines to monitor my decline.” And as another mentions, …”what have you got to lose compared to what you can gain?”

Randy

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I am on AP therapy and its working I take Minocin/Minocyclene Mon, Wed, Fri I see a doc that follows Dr. Brown's protochl. My Rhemy won't prescribe it says not enough studies done. My PCP and holistic docs are working together. Answer to prayer. I"m almost in remission

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Well it sounds to me all the AP users that have commented are really happy with the AP, but it would be nice to hear from both sides out there, are there anyone that tried AP, that didnt have any results, I am curious myself cause I never hear about any SD suffers that AP didn't help,

Nico2

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Before starting AP, I emailed dozens of people who had tried it, because some of their posts were years old. I wanted to know how they were doing now. I made some great friends. Every last one of them is in remission or improving. I even found one who is a neighbor, and who grew up with my cousin -- her story is great!

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I have personally met 6 people on AP (counting me, that is 7). Also, I correspond with 30 other people all over the US plus some in Canada and Tokyo. I have spoken with many of them over the phone.

One friend and her husband visit and stay at my house once in awhile. I am meeting with one lady and her husband Thursday in Las Vegas.

Every one I have met plus those I correspond with or talk to on the phone, are ALL getting better and some are in full remission.

A few, like me, take it with something else. In my case, I also do PHOTOPHERESIS treatments. A few take it with Cellcept. However, most of them do just the AP and some also have doctors who add another antibiotic administered thru IV.

Of the successful ones, only 1 had side effects which caused her to stop. Her liver enzimes went up and she had to go off the AP but was in remission at the time. That was more than 5 years ago and she is still in full remission. I spoke with her several months ago.

I know many of the people above who have commented favorably. I know them from other boards and from some personal e-mails. Have not met them in person.

All I can do is share my story. The only residual I have now is partially curled fingers. It's like I never had Scleroderma at all.

Remember, I was told 4 years ago by the top Scleroderma Specialist in the country that I was going to die. Thank God, I fired him and found someone else.

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