MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of the skin of the hand.

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New MCTD diagnosis

has anyone worked with a functional medicine Dr?  I am followed by a rheum but am thinking of augmenting with a functional medicine doc if worthwhile. It is very expensive so would love to hear anyone's opinion/experience on this matter. Thanks!

Replies

AllieFla
AllieFla

Hi there. I’ve also been recently diagnosed after having Raynauds for about six months. I saw a rheumatologist at the Mayo Clinic and he tested blood and confirmed the diagnosis. He also then tested liver/kidney functions and heart and lungs. So far all organs are good. He suggested I come back in six months. At that point I made an appointment with a functional medicine doctor and had my first appointment about two weeks ago.

She has suggested I go gluten and dairy free as well as low sugar, little caffeine. Basically close to the autoimmune protocol diet. She’s also tested my blood for vitamin deficiencies & additional testing that was not done at the Mayo Clinic. I go back at the end of October for those results. As insurance does not cover her visit, it was pricey. The vitamins and B 12 shots were also not covered.

I feel it’s worth it if it helps to slow the progress and helps to lower inflammation.

My functional medicine doctor feels that all auto immune diseases trace back to the gut and inbalances in the gut. Since I can’t change my genetic make up, I can least work on healing my gut.

Oh and my Mayo Clinic rheumatologist did not put me on any medication.

:)
MToennis
MToennis

Mor- I noticed in another post that you were on Plaquenil. Plaquenil cna take up to 3-6 months to get a consistant blood level that you need before you feel that it is working. It comes on so slowly that sometimes you want to just quit taking it. I took it for about 10 years. It was 3 months before I could tell that it was working. When I had to get off of it. I knew in a few weeks how much it had been keeping my symptoms at bay. I would take it again if I could! Dont get discouraged. Just give it more time.
Mary Ann
moR
moR

Thanks so much for your responses. I already feel comfort sharing with others who have experienced the "weirdness" that are MCTD symptoms. AllieFla have you read autoimmune protocol by Amy Myers? She is a functional medicine MD and recommends all that you describe you are doing. I have been as well. I have had every lab known drawn. MYoennis My rheum thinks plaquenil should be in the water it's so good. I really don't want to be on it but also don't want disease to progress further. Thanks for your comments all.... it is good to have someone to talk to!
AllieFla
AllieFla

I’ve read lots from Amy Myers!! Good stuff. Also Mark Hyman. My doctor follows their protocol. I was surprised my rheumatologist did not put me on any medicine, but again, I imagine that will or may happen in the future....

The food aspect hasn’t been hard for me. And I ate horribly prior. For me it’s more stopping in the alcohol:(. I’m not there yet.
moR
moR

I think it's a good sign your rheum didn't rush to meds right away. So many Drs are and I'm not Quick to jump on the prescription train! The food is ok ....I have always been a healthy eater but I miss eggs, cheese, and nuts etc. never could give up daily cup of coffee but am adjusting to coconut milk in it. I have lost so much weight though.....not sure if it's the diet or disease. I too have a drink every now and then. I decided I still need to live a little and enjoy life....it's good for my mental health-haha! I'm going to check out mark hyman protocol as well
AllieFla
AllieFla

I have been told limited nuts ( walnuts and almonds ) is ok. So I am eating some of that. I lost weight but only after I cut out gluten. The problem is I did not need to lose any weight so I have had to work on gaining some. I’ve cut coffee/caffeine but have a decaf occasionally. Cut artificial sweetener and I use Manuka honey as a natural sweetener in my hot tea.

Also I juice....
(cucumbers, spinach, celery, pineapple, lemon, green apple and fresh ginger root) it’s supposed to be anti-inflammatory. Either way -it tastes good and I suppose it can’t hurt :)

I’ll update after I meet with my functional medicine doctor at the end of the month. That will be our second meeting and the first after I’ve been on her vitamin regime for a month.

Be well!!
moR
moR

I make the same juice! I too think that diet is the only thing that I can control and have been pretty compliant...minus the cup of coffee. Fear is motivating! I want to stay healthy as long as possible. I am trying to gain some weight back too....it is hard on this diet. I think I will try adding some almonds and walnuts as well. Hope your visit goes well and looking forward to hearing how it goes:)
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