A new day, a new diagnosis. Found a new Rheumy when my old one retired and had another blood workup. I test very high for RNP Autoantibody which indicates, apparently without a doubt, that I have MCTD. This is a hodgepodge of all our favorites - Raynauds, Scleroderma, RA, Polymyotosis, Lupus, Sjorgren's, etc. Relieved to have a diagnosis, I suppose, but feel about the same way about this as I did when I first understood what it means to have collagenous colitis. Overwhelmed.
I know this has been discussed many times on this forum, but these are all disorders of the connective tissues in our bodies and improper production, or lack thereof, of collagen. Scleroderma even has GI manifestations. You guess it - an inappropriate buildup of collagen in various places throughout the body, including the colon.
My CC diagnosis happened 4.5 years ago. I did the whole Entecort route but it failed to improve. The strict diet, for the most part, not only improved my potty issues, but also improved all the myriad autoimmune symptoms. But not completely. And everything is always worse this time of the year. My right knee has hurt so badly the last few months, I'm ready to amputate.
So, do you think it's time to try LDN? Where can I get some? I have asked my myriad doctors to no avail.
As always, thanks from the bottom of my heart...
Chris
Mixed Connective Tissue Disorder, anyone?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
MCTD - LDN?
Hi, Chris,
Your diagnosis sounds very similar to mine -- MCTD, LC and more.
My LC had been in control up until last week, and has now come roaring back with a vengeance. I do notice that whenever I have a flare, I experience concurrent symptoms that are also scleroderma-ish, including dry cracked fingertips, increased muscle pain (not sure if this is due to polymyositis or PsA.) I have followed a strict gluten free, dairy free diet for past few months, and thought I had my LC under control, but now it has returned regardless. Not sure if dietary changes have been beneficial at this point. My greatest enemy, other than LC, is overwhelming fatigue. The only time I feel half-way okay is when I pour a glass of wine.
I, too, have decided to try Low Dose Naltrexøne -- seems like very little downside, as there are few reported side effects. I ordered pills online from an Indian pharmacy, and am awaiting shipment. I'll be happy to share ordering info with you; I ordered three weeks ago and just received tracking info, so hopefully it's on the way.
Take good care,
Pam
Your diagnosis sounds very similar to mine -- MCTD, LC and more.
My LC had been in control up until last week, and has now come roaring back with a vengeance. I do notice that whenever I have a flare, I experience concurrent symptoms that are also scleroderma-ish, including dry cracked fingertips, increased muscle pain (not sure if this is due to polymyositis or PsA.) I have followed a strict gluten free, dairy free diet for past few months, and thought I had my LC under control, but now it has returned regardless. Not sure if dietary changes have been beneficial at this point. My greatest enemy, other than LC, is overwhelming fatigue. The only time I feel half-way okay is when I pour a glass of wine.
I, too, have decided to try Low Dose Naltrexøne -- seems like very little downside, as there are few reported side effects. I ordered pills online from an Indian pharmacy, and am awaiting shipment. I'll be happy to share ordering info with you; I ordered three weeks ago and just received tracking info, so hopefully it's on the way.
Take good care,
Pam
Lymphocytic Colitis - 2015
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Resolving multiple AI issues for me, came with fixing nutritional deficiencies (methylation etc) and healing leaky gut.
Home Made bone broth is full of gut healing, (including collagen) body healing goodness, make it on your safe meats. you dont have to drink it. I use it in all my cooking, cook veges in it, make soups and stews etc. way cheaper than any supplement,
more than anything, with multiple issues it takes time! once our guts are settled, and have good healing, then healing can happen elsewhere in the body.
speaking to a few practitioners, healing from chronic AI issues can take years...
Pam - did you see Lesley's post today.... It seems that after December you wont be able to order LDN from india...
Home Made bone broth is full of gut healing, (including collagen) body healing goodness, make it on your safe meats. you dont have to drink it. I use it in all my cooking, cook veges in it, make soups and stews etc. way cheaper than any supplement,
more than anything, with multiple issues it takes time! once our guts are settled, and have good healing, then healing can happen elsewhere in the body.
speaking to a few practitioners, healing from chronic AI issues can take years...
Pam - did you see Lesley's post today.... It seems that after December you wont be able to order LDN from india...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you, Gabes --
The bone broth idea sounds great (and delicious) -- I'm going to break out the crockpot tonight. I know patience is needed here; it seems to be one long trial and error saga. Symptoms seem to flare and then go into remission, then flare again.
Yikes -- just read Lesley's post on LDN. Will research more outlets.
Many thanks for your help,
Pam
The bone broth idea sounds great (and delicious) -- I'm going to break out the crockpot tonight. I know patience is needed here; it seems to be one long trial and error saga. Symptoms seem to flare and then go into remission, then flare again.
Yikes -- just read Lesley's post on LDN. Will research more outlets.
Many thanks for your help,
Pam
Lymphocytic Colitis - 2015
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
Collagenous Colitis - 2011
Mixed Connective Tissue Disease - 2012
Psoriasis, Psoriatic Arthritis - 2012
Hashimoto's Disease - 2003
Non-Specific Colitis - 2004
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Pamela
i have been on a 8+ years journey of health issue in chronic state, then it calms down.
in my case, I am certain the MC is a symptom of the other health issues...in the scheme of things the MC has become the easier thing to manage!!
Home Made Bone Broth - the amino acids, minerals, collagen, etc in a readily absorbable format is one of the easiest things we can do.
i have been on a 8+ years journey of health issue in chronic state, then it calms down.
in my case, I am certain the MC is a symptom of the other health issues...in the scheme of things the MC has become the easier thing to manage!!
Home Made Bone Broth - the amino acids, minerals, collagen, etc in a readily absorbable format is one of the easiest things we can do.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
what ever your safe meat sources are....
i just use Himalayan salt and water.... for the basic bone broth
then use this as the basis for various meals - soups / stews etc, i also boil my veges in it, poach eggs in it etc...
being in Aus, lamb is one of the cheapest cuts of meat so I make lamb shank and chicken feet bone broth.
i just use Himalayan salt and water.... for the basic bone broth
then use this as the basis for various meals - soups / stews etc, i also boil my veges in it, poach eggs in it etc...
being in Aus, lamb is one of the cheapest cuts of meat so I make lamb shank and chicken feet bone broth.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Good comments, guys. I agree that when my MCTD issues are in flare, the gut is also unsettled.
Just roasted a pastured, organic turkey and made a bunch of bone broth, which I canned. It's good to have on hand and I have started making my daily rice with it and using it to cook my other dishes.
And good point about the lamb bones, Gabes. I buy a whole lamb from a neighbor every year and this year got the bones along with the meat. I'm thinking I will roast them first before I make broth out of them.
Chicken makes great, gelatinous bone broth but, unfortunately, I react to it. I wonder if I could get turkey feet from our local organic meat farmer??
And Gabes, you are so right. This is a long journey with many bumps along the way that crop up at unexpected times. When my husband heard my diagnosis, he was pretty freaked out but I was much more philosophical about it. With the help of this group, I have made great progress taking control of my MC and that gives me the courage and the lived experience to doggedly chip away at "this fresh hell".
Thanks to you all.
chris
Just roasted a pastured, organic turkey and made a bunch of bone broth, which I canned. It's good to have on hand and I have started making my daily rice with it and using it to cook my other dishes.
And good point about the lamb bones, Gabes. I buy a whole lamb from a neighbor every year and this year got the bones along with the meat. I'm thinking I will roast them first before I make broth out of them.
Chicken makes great, gelatinous bone broth but, unfortunately, I react to it. I wonder if I could get turkey feet from our local organic meat farmer??
And Gabes, you are so right. This is a long journey with many bumps along the way that crop up at unexpected times. When my husband heard my diagnosis, he was pretty freaked out but I was much more philosophical about it. With the help of this group, I have made great progress taking control of my MC and that gives me the courage and the lived experience to doggedly chip away at "this fresh hell".
Thanks to you all.
chris
Chris,
Incidentally, CC is a connective tissue disorder also, because its primary diagnostic criterion is thickened collagen bands in the lamina propria layer of the lining of the intestines.
Tex
Incidentally, CC is a connective tissue disorder also, because its primary diagnostic criterion is thickened collagen bands in the lamina propria layer of the lining of the intestines.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pam and Chris,
I have been on 4.5 LDN since March 2014 for Dermatomyositis. I was diagnosed with UCTD after the birth of my son 11 years ago, then Dermatomyositis in 2012. I had horrible, itchy rashes covering 60% of my body. Prednisone initially helped (took plaquenil too), but I could not taper off. I would flare below 20 mgs, especially in the winter. Any viruses going around, stomach bugs, or gluten exposures caused flares. My rheumy wanted to add CellCept or Methotrexate, but I wasn't ready. So I asked for 3 months to try LDN.
My integrative medicine doctor prescribed the LDN after I asked for it. Apparently they won't suggest it unless you ask, since it's off-label use. Most of his patients take it (he wrote a book where he recommends it). I had much improved mood after a week and the rash started to lighten after 3 weeks. I started tapering the pred and plaq and was in remission by week 12. It was amazing. It took many months to finish the prednisone taper, but I've been off meds, only taking 4.5 mg LDN at bedtime for the last year. I get minor flares when I'm sick or exposed to gluten, but overall, things are under control. Sadly, the LDN only partially helped my LC. I still have D...
My rheumatologist was AMAZED by my response to LDN, but when I asked if he'd be willing to be my prescriber, he said no.
Good luck getting it. I highly recommend LDN for any autoimmune disease!
I have been on 4.5 LDN since March 2014 for Dermatomyositis. I was diagnosed with UCTD after the birth of my son 11 years ago, then Dermatomyositis in 2012. I had horrible, itchy rashes covering 60% of my body. Prednisone initially helped (took plaquenil too), but I could not taper off. I would flare below 20 mgs, especially in the winter. Any viruses going around, stomach bugs, or gluten exposures caused flares. My rheumy wanted to add CellCept or Methotrexate, but I wasn't ready. So I asked for 3 months to try LDN.
My integrative medicine doctor prescribed the LDN after I asked for it. Apparently they won't suggest it unless you ask, since it's off-label use. Most of his patients take it (he wrote a book where he recommends it). I had much improved mood after a week and the rash started to lighten after 3 weeks. I started tapering the pred and plaq and was in remission by week 12. It was amazing. It took many months to finish the prednisone taper, but I've been off meds, only taking 4.5 mg LDN at bedtime for the last year. I get minor flares when I'm sick or exposed to gluten, but overall, things are under control. Sadly, the LDN only partially helped my LC. I still have D...
My rheumatologist was AMAZED by my response to LDN, but when I asked if he'd be willing to be my prescriber, he said no.
Good luck getting it. I highly recommend LDN for any autoimmune disease!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
This was a very helpful response, Zizzle. Thanks so much for sharing your story.
My old Rheumy, after a year on Plaquinal, wanted to try Methotrexate, but I declined. Now my new Rheumy wants to put me back on Plaquinal and I again declined. I feel safer in giving LDN a try.
I know that some people order from India, but I would rather get it from a good U.S. compounding company. If any of you know of a registry for practitioners who will prescribe LDN, by State, that would be so helpful.
And, Zizzle, I wish you the best in your healing journey. May everything that you need, come to your hands...
Chris
My old Rheumy, after a year on Plaquinal, wanted to try Methotrexate, but I declined. Now my new Rheumy wants to put me back on Plaquinal and I again declined. I feel safer in giving LDN a try.
I know that some people order from India, but I would rather get it from a good U.S. compounding company. If any of you know of a registry for practitioners who will prescribe LDN, by State, that would be so helpful.
And, Zizzle, I wish you the best in your healing journey. May everything that you need, come to your hands...
Chris
Chris,
Here are some resources on LDN where you might find prescribers, including Facebook groups you can join. What state are you in? I'm in DC/Virginia.
www.ldnresearchtrust.org
www.lowdosenaltrexone.org
https://www.facebook.com/groups/GotEndorphins/ (you can ask about prescribers here)
Here are some resources on LDN where you might find prescribers, including Facebook groups you can join. What state are you in? I'm in DC/Virginia.
www.ldnresearchtrust.org
www.lowdosenaltrexone.org
https://www.facebook.com/groups/GotEndorphins/ (you can ask about prescribers here)
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone