I can empathize with your feelings about our medical profession. All I have been offered is prednisone and it worked to a limited degree but had the usual side effects. Cut back to 5 mg now.

I find good, comprehensive digestive enzymes (double dose with heavier meals) along with vitamin C and a cayenne pepper supplement all aid digestion which seems to be the starting point of our problem.

Butyric acid supplements and green tea seem to calm down inflammation better than anything else. I'm functioning at about 66% now... whereas it was about 20% in early 2013. Can do most things I need to do...just not some I would like to do.

The underlying cause in the gut could be mercury, parasites or yeast so a low carb and sugar diet is helpful also. As for a "cleanse", it was tried and every one of them made me really sick with die off reactions that were severe.

With a damaged heart the prudent choice is to take turmeric 2-3 times a week, coq10 and occasional probiotics, diet and supplements and try to slowly get better rather than taking a chance of killing myself with toxins released by die off. The program is working slowly month by month unless I succumb to an ice cream sundae which will cause a couple bad days.

I don't think you will find a magic medical cure because if one were available we would have some glowing "I'm cured!!" threads and I don't see any of those.

Wishing you well. Keep us up to date, please?

Hello Nancy,
I understand where you come from and many of us have been there as well at one point ...
The problem with SLE/MCTD is that every patient has different "priority-symptoms" and for "ordinary" doctors this is very hard to deal with, as many doctors feel "overchallenged" when they come across an SLE/MCTD-patient...
I had exactly the same problems with doctors and that was the reason why doctors did not even take my life-threatening-symptoms seriously enough to act before a catastrophy was going to happen (i.e. cerebral haemorrhages, chronic osteomyelitis, a severe stroke which paralyzed me for a long time on my right side etc...)
... The only advise - as another SLE/MCTD-patient - I can give you, is to educate yourself as much as you possibly can about your own pattern of this disease and if you feel something should be done medically a.s.a.p., find a way to go to the nearest A&E-hospital to have this flare-up or whatever it is, medically sorted out...
Good luck wishes from Kristina.

It is so hard to find the right Dr. Problem is, even with the best, they really dont know what to do. Treatment of the symptoms is probably the best way to go. So, if your issues are gut, you treat the gut. If it is lungs, you treat lungs, ect. Some docs are not so versatile. You might need a specialist for what your main problems are. The thing is to get one that believes you are ill and is willing to work with you, be it a rheumy or a good internist or even a family practitioner! Then, you work through it together. You know, Drs dont really heal you, they give your body a chance to heal itself. It is also important to be you own advocate. Speak up about issues and try to help yourself as much as possible. As you research, be careful and take the info with a grain of salt. There are a lot of folks out there who can easily mislead you with "information". Try to look at reputable sites. As an example, if you drank all the different teas Dr Oz tell you to drink each day , you could die from overhydration! As for a Dr referral, sorry, dont live in the area, but know that I feel your pain and wish you luck.
Mary Ann

Yes, I do.

I would start with Frederick Swerdlow, 1088 Park Avenue, New York, NY 10128. 212-860-4000.

He may be retired. See if you can get an e-mail address or a referral-- he's a really nice guy, he might respond. Preferably, you want someone who worked with him or knows him, not just someone he may have sold his practice to.

Tell him you were referred by me. My first name is Matthew. My last name is the same as the guy who invented the radio telescope. (Not Grote Reber, the guy whose first name is Karl.)

Tell them I'm nearly 58 and still work almost full time.

Jog his memory-- it was when he shared the practice with Harry Spiera. Tell him I had pericarditis when I was 19, and that Swerdlow and Spiera could hear the pericardial rub even though it wasn't their specialty. My original diagnosis was lupus, even though I was antibody negative. But without that lupus diagnosis, I would never have gotten the Anti-RNP test at my HMO 20 years later.

Tell them I was treated mostly with alternate day low doses of prednisone.

Tell them he probably saved my life. That I'm married, I live in Los Angeles, and I'm happy.

Tell them how grateful I am.

This probably won't work, but wouldn't it be cool if it did?

Let us know.

You guys are incredible...and I am so very grateful. Oldhoosier, I take your words very seriously and appreciate the effort you put into that thorough answer....I will try a few of your suggestions!
Kristina, I am deeply sorry that you had to get to those places in your health. It infuriates me. I so appreciate your support and guidance.
MaryAnn, such good advice. And so very true. Funny about Dr. Oz too! lol
And Matthew...are you kidding me...of COURSE I'm going to try to contact that Dr...and I'm going to make sure he gets all that you wanted me to share. I'll let you know...and thanks mucho.

I need to stop lurking around this site and start responding and posting more. You all rock!

Warmly,
Nancy

Hello again Nancy,
... just a quick note to wish you good luck and all the best ...
... and please let us know how you are getting on.
Best wishes from Kristina.

Hi guys,
Thanks again for replies. (And Kristina for checking in.... So sweet)!
I'm still in a bit of a flare and still feeling similarly emotionally. But a friend did some research for me and talked about her suggestions. And someone in the group messaged me with a dr about an hour and 15 min away. So I will be trying to get on and hoping he takes my insurance!!
I feel and fear this disease is progressing and it's nearly impossible to adequately explain the discomfort, pain and symptoms to anyone but you all.
I have an spot with a hematologist next week to try and make sense of some blood abnormalities. You know, not absorbing what I should.

Anyway, thanks again!!!
Nancy.

Matt....your special dr. is not there...not for a few years. Not sure what to do, cuz I think he's in FL. I will find him and email him if I need to...but someone else gave me a name of someone in Westchester that I'm going to try. Thanks anyway!!!!!!
Nancy

Hello--
I too struggled & suffered with a nut and clueless dr before I began working with my rheumatologist. Keep the search going & meet with these docs. Feel them out & interview the heck out of them! I wasted time on a dr that did not take the time to listen to me or try to figure out at least that something was not quite right with all that I was going through. You need someone down to earth, open minded, they must have a positive bed side manner, care about you as an individual, be experienced with our symptoms & various illnesses and the initiative to dig deeper when the going gets tough!!! I am sorry I have no leads on your side of the map but may I suggest you searching at the hospitals in your area that are equipped for treating autoimmune disorders & ask around for what hospitals may have the rock stars in rheumatology departments. Then look into the rheum doctors online & search their history from education to what illnesses they treat. I even flat out asked the person on the phone who scheduled my 1st rheum appointment & a couple of nurses once I had a lead on a rheumatologist how the dr's practice was going, how did they treat patients, were they a good listener, were they kind..patient.. You babe it, I finally had the courage to ask it!! I narrowed it down to 2 docs & picked my 1st rheumatology dr from this info. I've been treating with this dr since the fall of 2011 when I was diagnosed with MCTD (among other issues). Don't be afraid to ask questions & advocate for yourself until you find a dr that is the best fit for you & your health needs. Your life may depend on it! And care & keep us posted!! Good luck!
Speechteacher