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May 13, 2010

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Yvonne Savoy

There is more than one rheumatologist who promotes the use of minocycline. Also, my AP physician is not a rheumatologist, just a general practitioner in a small town in Iowa who has been offering AP for more than 30 years to patients not only with scleroderma, but other autoimmune diseases. His overall success rate is 85% with the use of IV Clindamycin BID initially for 5 days followed by Minocycline 100 BID. You are correct there have not been sufficient clinical trials to prove that Minocycline is effective in treating scleroderma. However, when you're the one suffering the horrible ravages of this disease or any other autoimmune disease, it really doesn't matter. For me, the success rate is 100%. I am fortunate my AP physician has the common sense to continue to offer this treatment to others who would have no other choice but to take the immunosuppresant therapy and suffer the consequences of potentially negative long-term side effects. I will continue to try and get the word out to others who are suffering, one at a time. That is all I can do now. As a registered nurse, I am aware of the flaws not only in the minocycline trials, but in the established medical community. I went to three different rheumatologists before I went to see my AP physician. I wanted to make in informed and intelligent decision once I had the opportunity to research my options and discuss them. There was no doubt in my mind that AP would work. I have owned a business in the medical field for more than 15 years and I have had the opportunity to experience first hand the mistakes and errors in judgement that are made when physicians do not listen to common sense. You might be interested in reading the book by Henry Scammell, "Scleroderma, The Proven Therapy That Can Save Your Life." It saved mine.

Minnie Washington

Thank you for pointing out the facts concerning antibiotic therapy.

There are many of us who have tried it and not had positive results.

That, of course, doesn't stop people from screaming that it's all a vast conspiracy on the part of doctors and pharmaceutical companies to deny people life-saving treatment.

I have no doubt that the antibiotic people will continue to post en masse here proclaiming massive healing powers of Minocycline for autoimmune illnesses.

It would be wise to remember that they offer little proof of their claims and certainly not any recent, large studies.

Alex

Don't take it personally doc. Hang around the Road Backers long enough and you'll see it has nothing to do with logic or reason. It is more like a cult. Their latest "breakthrough" is that everyone with an AI disease really has undiagnosed Lyme. Go figure. Dr. Brown would be ashamed at what that organization has become and how they have twisted his ideas.

Louise

I don't have scleroderma but I do have rheumatoid arthritis. I read "The New Arthritis Breakthrough" and then had a discussion with my GP, who prescribed me some minocin for my RA. After I was on it for a few months I was able to convince my rheumatologist to let me give the whole AP thing a try, so I stopped taking methotrexate. It took about a year for my symptoms to ease out but after 3 years I can say AP sure worked for me! (I am almost symptom free most days and very mildly affected when I "flare".) Not only that, but I steered two other people I encountered who both had therapy resistant RA to "The New Arthritis Breakthrough" and both of them are doing well now with antibiotic therapy.

Actually, one of them dismissed me as a "flake" at first, but later when she was wheelchair bound and out of options, the volunteer in the hospital gift shop slipped her a bit of paper about AP...seriously!...and she finally decided to try it, and it worked for her. That was about a year ago and she is doing quite well now.

I know this is not clinical study, but this is what I have personally experienced and witnessed with this therapy and I think these stories are valid and need to be told.

Alice

Thanks for the information and I appreciate your willingness to consider the other side of the story.

I am courious as to how many patients you have tried mino with and found it not to helpful?

I am just grateful I have both a rheumatologist AND an internist that are very open to listening to their patients and are willing to step out of the box. These professionals in my life said, sure, let's give AP a go and believe me, I was the skeptical one at first. However, I was more willing to try something less damaging than the immunosuppressant drugs out there that have definitely proven they do nothing for scleroderma. I personally had a hard time denying the countless positive outcomes posted on the roadback and decided, what do I have to lose? I don't think I need any double blind study to prove to me it works. All those people who have had reversal or have had disease progression halted on AP were enough for me to believe. It gave me some hope when there isn't much out there in mainstream medicine for scleroderma. Thank God my doctors didnt' take that hope away! So how can you blame us in the "cult" for desperately wanting others to feel good too? It really is not a terrible drug to be on... so I don't get the big resistance. The incidence of Lupus induced mino is very low and reversible (correct me if I am wrong). Besides I'll take that over hair loss, vision loss, etc. anyday. Heck, I have scleroderma for heaven's sake so what could be worse?
No thanks to methotrexate or any of those other immunosuppressant drugs for me. And I am sorry, maybe call me cynical but I can't help but think the big money making drug companies have got to have some influence wooing those out there prescribing.

Maria

I just need to get my 2 cents in here again. I am the biggest skeptic in the world when it comes to medicine of any kind. I never popped so much as an aspirin before I got Scleroderma. When I was at my sickest--completely emaciated, muscle-wasting, skin hardened on 90% of my body, terrible pain, headaches, tendon friction rubs, etc...I seriously didn't think ANYTHING was going to make me better. I was 37 years old, in the best shape of my life, newly married and embarking on a wonderful career. To hear doctor after doctor tell me that nothing was wrong with me because it wasn't in my "blood", and to tell me once I was diagnosed that there was really nothing they could do for me was devastating, depressing, horrible. I was praying for Cancer because to me, Scleroderma was the worst disease on the planet, and I didn't want to die that way. That is when I started frantically researching EVERYTHING I could about the disease, and every drug out there that had been and currently was being tested, used to treat, stop the progression, etc. of this horrific disease. Something clicked when I found the Roadback Foundation, and suddenly it was the first time in all the darkness that I felt hope. Nobody brainwashed me into believing in the antibiotic therapy--they gave me information, and I made the decision to give it a year to see if it made me feel better before I would try the other more "traditional" drugs. My brother is an orthopedic surgeon, who doles out prednisone on a daily basis, and when he found out my diagnosis, he told me to STAY THE HELL AWAY from prednisone, because of what it does over time to the body. I don't think all rheumatologists are bad--I see a rheumatologist who has used antibiotics to treat various rheumatic diseases for 20+ years in California. Scleroderma just happens to be his specialty. He's been laughed out of conferences when he's told his collegues about using minocycline and clindamycin to put 90% of his patients into remission. I looked him in the eyes in March of 2008 and told him he had a year to show me whether this worked or not. Well, within 5 months (not easy ones, I may add) of starting iv clindamycin and minocin, 80% of my body went into remission. I've had near complete reversal of my hardened skin, joint pain completely gone (I was a marathon runner and tri-athlete before), am exercising 5x/week, running again, and pretty much forget that I'm sick on a daily basis. I do still have slight contractures in my hands but, they are even trying to straighten out. My family and friends, and doctors who didn't believe me are in total disbelief at what has happened. My IM doctor who be-grudgingly helped facilitate the iv's for me physically has pulled me aside numerous times to tell me I have to talk about this, educate people, tell my story, tell doctors, tell ANYONE who will listen. Why are there no studies on this? I don't know, and that's the millon dollar question. I think it's shameful that it hasn't gotten any attention, or that more doctors don't have the courage to publish their results with AP. Then again, a lot of them have been villified for not agreeing with the status quo. It happens in medicine all the time, and some of the brightest stars in medicine never get acknowledged for their brilliance until years after they've passed. Forget minocin, forget everything you've read here for a moment, and just think about the possibility that this disease has an infectious cause. Maybe you need to start there. I'm proud to be a volunteer for RoadBack Foundation because they SAVED MY LIFE. I pay it forward, it's the right thing to do, and frankly, I don't give a damn whether anyone believes me. I'm happy to share my story, meet you in person, show you how I don't look like the poster child for Scleroderma anymore. I'm not part of any cult, I'm alive, happy and no longer afraid of this disease. I'm sorry that Minnie and Alex didn't have success with AP--I don't wish this disease on anyone, and unfortunately, there's no guarantee with ANYTHING you take. I'm just grateful I held on and got through the 5 months of agony that I endured on the clindamycin to have such an incredible breakthrough and healing. You cannot convince me, no matter how many studies you throw my way to the contrary that I DIDN'T have an infectious cause to my disease. Why could I smell bacteria coming out of my pores? Why did I react so vioently to the iv's? The only thing that makes any sense at all is I had an infection, and now that the infection is under control, I feel better. I'm still skeptical, and I think I always will be but, I trust my decisions, and know that I know my body better than anyone else does--I'm a better patient, and my doctors appreciate that. I've been given my life back, and for that, I'm blessed. I just want a dialogue to happen--good, bad or indifferent. I'm happy to answer any questions you have, any time.

Maria
773-294-4499

Ruth Heasman

I don't have scleroderma, but I have had rheumatoid arthritis for the past 22 years. I was recently diagnosed with Lyme disease, which has given me access to antibiotic treatment, which I have been on for about 8 months now.

My arthritis is now very nearly in remission (according to my bloodwork - CRP has come down from 134 to 18) and I am feeling utterly transformed. As others have said, the treatment itself can be hard to endure in the first few months as it involves a good deal of feeling worse before you feel better, but now I am past those first few months I am so grateful I took the trouble to get through them.

For those who are sceptics I would like to point you to my YouTube videos. This is my week by week account of my improvement and the herxing along the way. http://www.youtube.com/user/ruthheasman

Sometimes actually seeing someone speak about these things has more impact I think. I too am happy to answer any questions anyone might have.

Jack

Listen. The answer to why minocycline is not "more proven" than the study the all volunteer roadback foundation conducted with Dr Trentham is simple. Money. If you want proof, sit in an doctors office (including rheumatologists) for an entire day and count the number of drug reps the come by. Do you think they work for companies that will fund a study that says a generic medicine has the ability to do what a $2000 a month patented medicine cannot do? Of course they won't!!!! When every doctor in this country is getting a large majority of their information from drug reps (either through funded studies or through face to face visits) AP does not stand a chance. I have heard from soooooooo many people this therapy has benefitted and from soooooooooo few it has not. When I say it is unconsciounable not to offer this treatment as the "FIRST LINE" I mean it.

Jack

I know of another SD patient who is also a medical researcher by profession. AP has cured her and she can very specifically tell you why the study that refutted minocyclene for SD was a very poorly designed study. One that apprears very suspect in my mind.

Beverly Hager

With respect to all that spoke negatively of using minocycline to treat scleroderma, you should keep in mind the hope you are taking away from the desperate individuals going to their doctors for answers and getting none. When my dad was diagnosed, they offered absolutely nothing...no hope at all....just come back in 6 months and we will see how your health has declined. What for? why bother? this was beyond frustrating. I worked in a specialty medical office for 11 years, watching the rare diseases spark up the excitement in the medical field...writing abstracts, submiting articles to medical journals and trying even the craziest regimen to be the one to help cure the rare disease/illness. But then again I worked in a pediatric office. I personally feel that when something involved a child the medical community goes wild and eats it up, but when it involves an older individual they would rather watch you suffer than take an extra step to help you. And for those of you who trash the physicians for not doing something that would help them out tremendously financially...I applaud you. In all honestly, the ones of us who are affected by rare and uncurable illnesses look for answers, unless a physician is truly touched by an individual or it hits their family, I do not personally feel that they give effort at all. I personally did beg for my dad's physician to try the minocycline as treatment. I researched what is out there regarding it and sent the stuff to him and asked for him to give it a try. However, it was very upsetting that he did not let my dad continue to take it since there were no notable improvements, but there were no harsh side effects like all the other crap they even try to offer. They offered one drug that is used for cancer patients, but when he talked to my dad about it he in no such words told him that if he were to do it, he would wish he was dead. Although we did not see any improvement with my dad after being on the minocycline for a period of time, I wish they would have continued it longer. Really and truly if I was told if I were to eat one green crayon a day to improve my health, I would do it! It i waxy and does not taste the best but if there was a glimpse of hope, I would try it. Don't slam ones with hope and ones that have been cured. Afterall, all cures had to have started somewhere, even if only studied in small groups. Also, we all know that the US does not want us to know of many cures that exist, we know this, some choose to ignore it but we still know deep down. Can you imagine what it would be like if we all found simples cures to even the most complicated illnesses. What if taking the cheapest medication such as amoxicillin cured so many things, do you honestly think they would let us know and let all the darn rich doctors that have so much money but have no sole lose their jobs because we would not need them anymore. Please.....it would never happen. I saw once on the discovery channel I am sure about some place where the doctors only got paid if they cured the sick....US doctors would be as poor as the rest of us!

Sclerosed

Permalink, I am a physician who rapidly developed systemic sclerosis in 2007. The disease became so severe I lost the use of my hands, if you can imagine. Within a few months of developing the disease, I utilized the IV clindamycin / oral mino regimen. The turnaround in disease pattern was astounding, both to the viewer and myself. This medication regiman works. However, there may be some timing criteria and dosing adjustments but time will show it will save lives and save healthcare dollars. Watch for the cost-analysis studies in the near future....

Maria

This is my 3rd post but, I'm excited to be posting again. I've hit a milestone with my "incurable" disease...I've been running 4-5 miles at a time, 4 days a week now for 6 weeks. NO PAIN, NO FATIGUE, NO PROBLEMS. I've also found a rheumatologist in my state who wants me to help her facilitate a study on the use of minocycline for rheumatic illnesses like Scleroderma and RA. What's interesting is that she's a faculty member of a prestigious institution, and is moving to another hospital because they have a more progressive and open-minded research department. She's originally from another country, and is disgusted with how the medical environment among her collegues is when it comes to research. She's conducted clinical FDA trials for 15 years, and knows all too well the phrase "double blind placebo study." Since there seems to be some oppossing opinions about the validity ("proof") that minocycline works for diseases like Scleroderma, let me pose a question...How ETHICAL would it be to conduct a double blind placebo study on patients so sick that 6-12 months of getting a placebo could mean the difference between life and death? Scleroderma in many instances is deadly and swift in how it strikes. It's unconsciounable to demand that the validity of a study fall upon whether it's been proven in this way. I applaud every doctor, rheumatologist or not, who has the guts to go against the traditional medical paradigm and actually uphold their oath to "do no harm first." You WILL hear my story, you WILL hear about her study, and there WILL be plenty of people I make sure I send her way. What saddens me is that the funding for this study isn't coming from the sources granted to other researchers...it's coming from private equity funding because NO ONE at NIH or other medical establishments wants to fund it! Yet, new chemo and immunosuppressive drugs get the green flag and millions of dollars handed to them for treatments that have NOT been proven to be effective for these diseases. Again, shameful!!

Wendy

I developed scleroderma in 2001, diagnosed in 2002 and immediately began treatment with minocin. My doctor has heard about it and wanted to try it. As a follow up I saw Dr. Trentham who insisted on the name brand not the generic. I was on it for three years and am completely free and clear of the disease that was progressing rapidly. Not even a positive ANA anymore. Two things Dr. Trentham stressed: It had to be minocin, twice a day for many years and you had to catch the disease early. By the way Trentham has also pioneered other treatments for RA. He is a researcher as well as a doctor and teaches at Harvard. He is as surprised as anyone that doctors are so reluctant to try such a safe treatment.

Joanne Drayson

I came across your post with a Google search for Scleroderma and antibiotic treatment to answer a question I had been asked.

My initial reaction was how good to see an open minded Rheumatologists after the 3 rather arrogant, to the point of rudeness, I had the misfortune to consult with.
Before I was diagnosed with Lyme disease.

I was interested in your comments about Road Back an organisation I found some months ago after my arthritis and muscle weakness was nearly 100% recovered after long term antibiotics.

My GP suspected Lyme Disease when my symptoms made such a significant improvement on a chance course of antibiotics for a chest infection.

Eventually I found a private specialist in this field who supported my GP's suspicions.

Here in the UK there are a growing number of doctors and consultants ( several I am in touch with)that are following ILADS approach in favour of HPA/IDSA, some because of their or their family members suffering with Lyme Disease.

I would be interested in your take on Lyme Disease and the controversy that surrounds diagnosis and treatment. Not just the establishments view but yours after doing lots of reading on both sides of the argument. In fact I commend the book Ending Denial available through
http://www.canlyme.com/
Scleroderma can be a symptom of Lyme Disease and is mentioned in this book.

I can't prove Lyme Disease or any other infection was the cause of my years of painful and debilitating illness but I and my two treating doctors believe that antibiotics long term are what has got me to my present good health.

I was also interested to hear your scepticism over XMRV retro virus and will be interested to read your next post on the matter when the Alter research is finally released possibly next month.
http://www.forums.aboutmecfs.org/content.php?207

I am looking forward to following your blog.

3+speckled

Sclerosed
A cost analysis study? Who, when and where.

Wendy.
Dr Trentham shouldn't be surprised. Any researcher would know that his preliminary study was inadequate, though intriguing. The real surprise is that a researcher in his position who feels so strongly about the treatment hasn't done more to prove it. Of course, not knowing the man nor anything about his circumstances, there may well be reasons for this, but until more is forthcoming, it will never be widely used.

Maria
Glad to hear that your doctor plans to do research on this question. I think that placebo trials are completely ethical in this situation. If minocycline is shown to work, it will become the treatment of choice and help hundreds. If there is no such study it will never be widely accepted. I'm not one to think that controlled studies are the be all and end all, they're just the best we've got.

ErnieG

Are you done blogging? If so, I'm sorry to hear that. Did this minocycline "controversy" bring you to the end? (I call it "controversy" because I really think it is obvious that the idea that minocycline works is pretty much debunked). I am also a rheumatologist, and I enjoyed reading your blog in the past.

3+speckled

Not quite sure. Needed to take a break for many reasons and always planned to get back to it, but there always seems to be something more pressing. Hearing that somebody noticed I was off line is encouraging, thanks. The minocycline story was actually interesting. I don't know if it surfaces a lot in your area, but I had never heard of it in these parts.

ErnieG

I've not had patients discuss this minocyline thing in systemic sclerosis, but I do use it in mild seronegative nonerosive early non-specific subtle inflammatory arthritis (i.e. probable early mild nonerosive seronegative RA) if HCQ is not tolerated and I'm not sure I want to pull the trigger with MTX.

Around here there's alot of chronic fatigue/FMS labelled as "lyme's".

3+speckled

Fortunately, Lyme ticks don't like the cold. Probably the only advantage to winter up here.

Suzanne

Here is a new trial using doxycycline and vancomycin:

http://clinicaltrials.gov/ct2/show/NCT01198509?term=Rheumatoid+Arthritis&rank=1

I also miss your blog!

Suzanne

ErnieG has me confused, writing first, "I call it "controversy" because I really think it is obvious that the idea that minocycline works is pretty much debunked" and then, "I do use it in mild seronegative nonerosive early non-specific subtle inflammatory arthritis."

He prescribes a drug that he does not think works? Why? Is this a common practice for rheumatologists? (Or maybe Ernie is not really a rheumatologist - this is the internet....)

ErnieG

My comments regarding the uselessness of minocycline are limited to established Systemic Sclerosis. Minocycline is used for, among other things, acne and can be used for rheumatoid arthritis. It is well known that in addition to antiobiotic properties, minocycline has anti-inflammatory properties that are hypothesized to account for its utility in acne and RA. It is not the most commonly used DMARD for RA, and most rheumatologist would not use it first line as monotherapy for seropositive or erosive RA. Whether it is common for most rheumatologist to prescribe drugs that don't work, I would say it is probably not true that we knowingly do so. I am sure, though, that looking back from the future we will probably say we did!

Suzanne

Ernie G, thank you for the clarification (and your last line made me smile!).

Cubby

I really don't want to get in to a long discussion but in a nutshell, here it is: I have diffuse systemic sclerosis and 5 years ago, was told I would die by the self-proclaimed "top" doctor in the country, at the "top" hospital in Los Angeles.

I wanted MINOCIN and he would not give it to me. I heard about Photopheresis and he told me to find another doctor if I wanted either treatment.

I left his care and went to a different Los Angeles Hospital. That doctor refused AP but put me on Photopheresis and it was not working. I was getting worse and worse. My Rheuematologist, who is also Chief of Staff of the Hospital, added the Minocin in 2005. Within a month, I started to turn around. 5 years later, I am almost in remission.

Now, you say, It was the Photopheresis. So I say, I know 60 people (personally met some of them) who are all on AP. A few take only the Minocin or Minocyclene. Some take it with Cellcept. Some take it with another antibiotic by IV. Most take just the MINOCIN.

My doctor gives the Minocin to a friend of mine and she is "back to normal". Again, he is not a believer, but will use it.

My doctor has 3 other patients doing just the Photopheresis treatments. It is a slow process, but all are improving.

I am the only one I know doing both. If you saw me 5 years ago and see me now, you would not believe I am alive or was ever that ill.

I won't be back to this site but will give my e-mail. I will respond only to the doctor, in case he would like to contact my doctor. It is cubbymikey@aol.com

I have my own board sclerodermafamily.proboards.com. I am CUBBY. I am also on roadback.org (Cubby) and Inspire.com,(Cubby1) but not very often.

I have written my story on Inspire and my board.

Those who saw me back when I was very very ill and now, include my doctors, dentist, hospital personnel, dry cleaner, grocery clerks, water aerobic friends, sales clerks at the mall, my pet sitter, pet groomer, my beautician, my manicurist, my neighbors.

The point is, I have my life back!!! My husband travels for business and I usually go with him. I often find someone with Scleroderma in that area and meet them, usually with their spouse. I receive phone calls and e-mail from people as far away as Tokyo and England, inquiring about my experience with AP and my experience meeting people taking AP.

I never had the side effects some get from AP, i.e., the herxing or any liver problems. I realize that if my liver enzymes ever increase, I would have to go off the AP. BUT, I was actually dying under the treatment of "top doctor". He made it clear that it was unlikely that I would survive 5 years and those years would be "difficult". My friend was also treating with him and died within 3 years of contracting the disease. At the time, I had it a year. My first symptoms occurred in March, 2004. I am a woman and am 62 years old, with red hair. At one time, it was thought that those of European decent (Irish) were at higher risk for this.

I remember saying "you said I am dying anyway, why won't you try it?" He was furious. He was also very angry that I spoke personally to Dr. Trenthan as they had been colleagues at one time.

So, I say, when someone tells you that you are going to die and there is even the tiniest chance that something could work, why wouldn't you try it????

Djuna

There is a new study published in the Journal of Dermatology about the antifibrotic effects of cipro in scleroderma patients titled, "Ciprofloxacin utility as antifibrotic in the skin of patients with scleroderma"

http://onlinelibrary.wiley.com/doi/10.1111/j.1346-8138.2010.00826.x/abstract;jsessionid=3605C019001EDB447488CD71236F4896.d03t04

Nikki

My boyfriend was recently prescribed minocycline oral tablets to treat "en coup de sabre," Limited Scleroderma.

After his diagnosis, the first dermatologists wanted him on Methotrexate, but I read Henry Scammell's book and found out about the minocycline through that. I was thrilled when we went for a second opinion, this new dermatologist strongly believes in AP success rate.

Can anyone give me some feedback in relation to the minocycline working for limited scleroderma and also he will be on a generic form of the minocycline- has anyone had a negative experience with the generic.

Thank you in advance for your insight.

Nikki.

Searching

I am a 35 year old female, married and a mother of a 4 year old son. I was diagnosed with diffuse scleroderma last July, at which time I was perscribed Methotrexate. It has helped to some degree, but I am still progressing. This disease has almost taken over my hands, my skin is tight in some areas, and some of my joints are achey. there has been no organ involvement yet,thankfully. After some reading and some research, I asked my Dr. for the minocycline. He is not opposed to trying this and perscribed the pill form(100 mg bid)and has had some sucess with it in RA. My question is--will the pill form work? I need more info. Everything that I have read says that the disease needs to be caught in an early stage and I do believe that we did catch it in time. in most cases, I am well compared to others. I have high hopes and much faith in beating this awful disease. I am not a quitter and I think that is half of the battle. The mino treatment has caught my attention on several occasions and I would like to hear more about it. All information, good or bad, is greatly appreciated. Thanks, and I will be revisiting this site soon.

tacfit warrior review

n 1998, the medical journal The Lancet published the results of a one-year study, headed by Harvard rheumatologist David E. Trentham testing the tetracycline Minocin (minocycline) on scleroderma patients [1]. Improvement in skin scores (a measurement of hard skin caused by the disease) was noted in all patients, with no serious side effects. Although subsequent studies have not all indicated such a remarkable achievement, more clinical studies using prolonged antibiotic therapy are sorely needed.

Systemic progressive scleroderma is a potentially fatal disease recognized for over 200 years. Scleroderma is considered incurable, but there are thousands of patients who have been helped with antibiotics.

jannah kim

this post is really good i would definitely recommend this to friends

Reader in Atlanta, Georgia

Just found your blog today. Sure wish you were still blogging. Hope this AP stuff didn't drain your enthusiasm.

Love your sense of humor. Hope you'll start posting again soon.

Reader in Atlanta, Georgia

Marlene Greenberg

Can you tell me Rheumatologists that are willing to use Minocycline in the Los Angeles area or around.

We had a bad experience with UCLA and an arrogant doctor....

BG Holzheimer

I am a 57 yr old woman, wife, mother of one daughter and new Grandmother of one beautiful baby girl. I have suffered with sever FMS/Chronic Fatigue Sydrome since 1986 so sever I have been classified disabled and am primarily housebound. My loving & supportive husband & wonderful daughter learned, along with me how to take each day as it came & make the best of the few good days I have each month. In 2010, I tested positive to Scleroderma, was told by my GP that there is no treatment & then found a Rhuematologist in Missoula ( I live in Great Falls MT) who retested my blood thru the MAYO. Even tho I still tested postive, she didn't want to have scleroderma because I had no skin signs & so wait until more symptoms appear & then come back to her.??? REALLY??? I gradually became sicker & sicker with all the internal symptoms. But in 2011 after asking my Dr to retest me again, I tested Neg. This past year has been a nightmare for us. I have terrible colon & digestive issues, liver involvement, large weight loss & pain & fatigue worse than in the past 20 yrs. I went to my Dr & told her I thought that she & the gastroentologist I had seen recently were missing something serious so she ran a new batch of tests. Yep, I am testing positive for scleromderma AGAIN. She referred me to the Univ of Was & they said they had nothing to offer me at this time.?? So now she is trying to get me into the MAYO in Arizona. What does it take to find a Rheumatologist or Gastroentologist that is open minded a& listens to the patient??? There has to be other tests out there to verify whether I have this disease or not?? We already know I have severe adhesions thru out my abdomen & back & I was diagnosed with a Torturous Colon in 2008 so we know I have kinks, twists & sections of my colon stuck to area it shouldn't be. But I can't get any help from the gastroentologist here. The Gastro Dr I was seeing since 1997 retired in Sept 2011 & the2 other gastro. I have seen this year say they don't think I have any of that?? I am so ready to try the AP Therapy but need to find a doctor willing to work with me. Anyone out there who has tryed this therapy & can give me your positive feedback, know of a doctor I can go to? We are willing to travel just to find help. I am not interested in any of the negitive opinions out there because I would really like to stick around to grow old with my husband & share in our daughters life-watching her daughter grow up. Even my Neurologist of the past 25 yrs said go for it, its worth a try. He also told me to GET OUT OF MONTANA. That is pretty sad considering we have a multi-million $$$ Medical Center right here in town!! Thanks to all of you who have taken the time to post your positive experiences since you already know how very hard it is for those of us with autoimmune disease to get GOOD medical care.

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kalipso

My daughter has scleroderma. I am looking for a doctor in London that treats it with antibiotic.
May I know what happen to all those people wrote this awful disease in 2010 and in 2011?
Please write
Kalipso

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Minocycline for Scleroderma is good treatment.

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Diane

Maria, if you still blog, who is the rheumatologist you saw in California? My mom has scleroderma and desperately needs a good rheumatologist who believes in minocycline. thank you

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