mixed connective tissue disease and life expectancy

Hi Ticbudgirl,
MCTD is a extremely rare disease. It's possible that you've had it for many years without being diagnosed, and it affects people differently. I had lung symptoms and Raynaud's disease. I am in remission, all of my previous symptoms are gone. My first problems were that my fingers were swelling up, etc, my legs were heavy, later my feet began to swell. Your symptoms don't sound like MCTD to me. The disease is diagnosed by your lab results. Study all you can about MCTD. I went to 2 web sites that I found helpful, those were the road back and a rheumatic web site. Find a doctor who is anxious to help you and will listen to you. I am taking a 'tetracycline' antibiotic, minocycline, it keeps me in remission. Most rheumatologists will not prescribe antibiotics, they are prescribing immunosuppresants which have terrible side effects, I know I took Plaquenil and got bad side effects within a month. I hope this helps you in your path. Carol

Hi Spacker,
I have found out that this disease is curable! Dr Thomas Brown studied arthritis and autoimmune diseases for 40 some years. He treated patients and you can read thier testimonies. He wrote the book The Road Back. He died in 1988...and there are at least 3 web sites about using antibiotics for MCTD and other autoimmune diseases. Since you have had the disease for 8 years you will need to find a doctor that will treat you with an antibiotic IV of the tetracycline family. Your doctor would have to study the treatment. If you go to the road back web site they will send you a list of doctors in your area. I've had MCTD for 8 years too. I have no pain but I take a small dose of minocycline on MWF to keep me in remission. In fact I trully have an invisible disease. I know this cure is out there for you. Study the internet for web sites for rheumatic disease and for the road back. I hope to hear back from you that you have conquered this beast. Carol

Hi workingmom,
I was diagnosed with MCTD in 208 and I am in remission. I've read your letter and you are fortunate to have a good rheumatologist. You should find the road back and study it. There is a real good website on rheumatic disease, that you should look at. Dr Thomas McPherson Brown was the good doctor who studied rheumatoid diseases for 40 years and successfully treated hundreds of patients. He died in 1988.

You are fortunate because your rheumatologist is giving you doxycycline which is fighting the infection that you have. Prednisone is a very dangerous drug because it is very addictive, it also hides your disease, you should study prednisone and get off it as soon as possible but you will have to get off it very gradually. Plaquenil and methotrexate are immunosuppressants and have harmful side effects, including headaches, psoriasis, and eye damage. I took plaquenil for a month and I got all 3 of these.

All the other things you are doing are very helpful, ie. exercise and good nutrition. I take supplements too but I don't know how effective they are, but they can't hurt. I was a registered nurse, so I keep studying all these things as much I can stand.

You will have to figure all of this out and then you can educate your rheumatologist, but you will have to be knowledgeable enough to persuade him or her. The use of immunosuppressants is despicable. You won't even need any pain medicine when you get into remission. You might think this is too good to be true but I am living proof! Carol

Dear hobbit65,
I am 68, I was diagnosed with MCTD when I was 60. I was told that MCTD is a rare disease and I only found a few people who had MCTD on some other web sites, until I found this website. I was a nurse and I wanted to find a sharing group….I found a rheumatic website that got me started in my search…a few years later I found the road back which proved to be my road back to health.

My story is that I am in remission because I take antibiotics for my disease. I found the good doctor, Dr Thomas McPherson Brown who studied rheumatic diseases for 40 years, but he died in 1988 after treating hundreds of patients successfully. His discoveries were lost because of the discovery of prednisone. It was later that they discovered that prednisone is a very dangerous drug because it is addictive but it can be a wonderful drug if it is used with discretion and then discontinued.

So what you can do is study these things and go to your doctor and negotiate with your doctor. Most doctors are not aware that autoimmune diseases are caused by infection. Antibiotic drugs in the tetracycline family will cure your disease. But because you’ve had it for so long your doctor will have to study the antibiotic protocol and most likely you will need IV treatment for a short time and then you could get on antibiotic pills.

You could get your life back, if you study and find a doctor who cares about you and wants to help you! Carol

Hi Dee,
I can't believe you have MCTD, You were diagnosed in 2012? I was diagnosed in 2008. I was a nurse so I studied everything I could get my hands on. I have decided to describe MCTD as a cousin to other diseases including rheumatoid arthritis, lupus, scleroderma, and fibromyalgia, etc.
I am in remission because I take antibiotics. If you could find a doctor who believes in giving antibiotics you would have a chance. You are only 33? I am very worried for you. Do you have a loved one who would do research for you. You need to find out about the road back and Dr Thomas McPherson Brown. I will say a prayer for you! Carol

Hi Dinelle,
My MCTD started out just like yours, but I don't know how long I had Raynaud's disease. In those early days in 2007 I had crushing fatigue (I heard someone call it that), my legs were heavy, my fingers started swelling up and I got a little arthritis in my fingers, then I got carpal tunnel and rotator cuff. The rheumatologist said that my labs would never be normal again. I started studying the internet, I found a rheumatic website and they said to read Dr Thomas McPhersons book The Road Back. Later I found a website The Road Back. I started taking minocycline, an antibiotic for the disease and my labs returned to normal and my symptoms are totally gone. My family doctor said 'well it can't hurt you' but he was amazed when I got better! Study all you can, Rheumatologists may not be willing to accept this treatment, but hey, it works! Carol

Hi Lollipop,
It's a fact that MCTD is a very rare disease. I can't find my Merck Manual at this moment but I think that it also says that 80 percent of people will live for over 10 years. My story is that I found out about Dr Thomas McPherson Brown from The Road Back, he died in 1988 after studying and treating patients with autoimmune diseases successfully. Over time his life saving treatment with antibiotics has been forgotten, some doctors haven't ever heard about it. I want to tell you that I am in remission because of taking the antibiotic, minocycline. I am living proof that the antibiotic works. I was diagnosed with MCTD in 2008 and I started taking minocycline in 2009. I am convinced that I would be either dead or living a miserable life if I hadn't found out about Dr Brown and his treatment. I hope you do some research and get your life back. I am so fortunate, I have an invisible disease. Carol

Dear Jazzy,
It makes me sick to hear your story and know that you and your son could have been spared these dreadful experiences. My story is that I am living with an invisible disease-MCTD, but I am in remission because I found out about Dr Thomas McPherson Brown and his book The Road Back from a rheumatic website on the internet. The truth is that these diseases can be cured by antibiotics. Dr Brown died in 1988 and his legacy lives on but it has been forgotten or discredited. I take a simple pill, minocycline and it keeps me in remission. You would have to find a specialist who uses antibiotics and would treat you and you son with IV antibiotics for a time, eventually you could take the pill, minocycline which is inexpensive. I hate to tell you that you are taking immunosuppressants which may disguise your disease but they have several severe side effects. I took plaquenil for a month, I got psoriasis, head ache, and eye damage from it. I am living proof that antibiotics work! I was diagnosed in 2008 and started minocycline in 2009. I do hope you can find a doctor to help you but it will be costly. God be with you. Carol

Yolandarodz,
I have another site for you to check out regarding MCTD, Look for the rheumatoid website, they affirm Dr Thomas McPherson Brown. He was a phycican who studied all forms of arthritis over 40 years, he used antibiotics to put his patients in remission. About that time cortisone was discovered and it was a miracle cure, although they didn't know the dangers of taking too much cortizone. Unfortunately the use of antibiotics was left behind. I was diagnosed of MCTD in 2009 and I have been taking minocycline since then, and I am in total remission. Look for the book The New Arthritis Breakthrough. I hope you get your son into remission.
Carol

DarkAngel,
I was a nurse too, I'm retired now. I don't think I could ever work again but I'm 68 yrs old. I was diagnosed with MCTD when I was 60. I went to the internet for a share group because I was told that MCTD is very rare. I found out about Dr Thomas McPherson Brown and The Road Back from a rheumatic website. He used tetracycline antibiotics and minocycline to cure arthritis and autoimmune diseases. Look for the book, The New Arthritis Breakthrough. I know that this is too good to be true, but his patients and myself are in remission. There are hundreds of testimonies you can read. It's not too late for you! Study all that you can and find a doctor who can help you. I think you can do it! Carol

Lady Dee,
Hi Martha, My story is I was diagnosed with MCTD in 2008, I was told it was a rare disease, I looked it up in the Merck Manual, and it said that the life expectancy is 10 years. I was a nurse and I decided to find a share group on the internet. I looked at a rheumatic website and they sent me to find the book The New Arthris Breakthrough which has Dr Thomas McPherson Brown's book The Road Back in it. Later I found The Road Back website. There are hundreds of testimonies of remission by patients who have taken antibiotics for autoimmune diseases. I take minocycline and I an in remission. I would like to hear your story. Carol

Hi Alan,
The Mayo Clinic is an excellent resourse. I have been studying MCTD since I was diagnosed with it in 2008. I found 2 websites, the rhematic org website and the road back website, both of them honor the work of Dr Thomas McPherson Brown. He studied RA rheumatoid arthritis and other autoimmune diseases, he treated patients with antibiotics of the tetracdycline family sucessfully. There are hundreds of testimonies of people who are in remission. I take minocycline and I am in remission. I hope you will go to these websites. The tricky thing is to get your doctor to order an antibiotic because this option has been left behind. Some doctors don't even know about it. My doctor said that minocycline could not hurt me and I could take it indefinitely. Boy was he surprised when my lab work came back normal! I hope you still look at this website and that you can get into remission too! Carol

Deenasanchez,
I wish I had seen this website when you posted this! I'm pretty sure that there is a doctor in Houston that uses the antibiotic therapy that you need to put you into remission. I just went to a rheumatologist, First, she said that MCTD is not a disease, it is a combination of diseases, well that is certainly debatable. Second, she said that she would not order my antibiotic for me. Third, she said that she would not order the blood test (RNP) that monitors the progress of MCTD because it is not necessary. Fourth, she said that using antibiotics for autoimmune diseases is a TREND out there. hmm I found out about Dr Thomas McPherson Brown from 2 websites...the rheumatic org and the road back. I am in remission because I take an antibiotic, minocycline. After all of Dr Browns research and practise, the anibiotic therapy has been left behind. He died in 1988. I really hope you get this reply. Carol

Not sure, but ive had it for about 15 yrs. So far.

Hi
I've just been diagnosed with MCTD. I am curious if anyone is being treated by a doctor in CA, the bay area? I am interested in this!