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Hey guys, just an update..... First off I'm glad your on the upswing Tex! I made an appointment with the gastro docs at mayo clinic in Minnesota. I'm bringing a copy of Tex's book at the chance of being scoffed at by Harvard graduates.. I had a realization that maybe my weird symptoms of shaky legs, lower than usual BP, can't get a satisfying breath, thirst that is never quenched, cyclical extreme fatigue aren't signs of tolerence to my benzodiazepine med. I challenged this yesterday by taking one during the day to see if my symptoms improved...can't really tell, yes and no. Regardless I'm weaning off of it by using a water titration method and going really slow. I'm scared to death to go to mayo since docs have failed me in the past. I must get over that. They are great up there. They have a process of elimination before they tell you it's in your head I want to talk to them about LDN. I don't know if you can take that while on a benzo. I don't see why not. Wish me luck guys! If there is anything you think I need to bring up or ask them, let me know
When I went 2 years ago, I saw Dr Pardi, he has done some research on MC, the best he could offer me was stay on Entocort as long as I wanted or needed. I did not go back as I wanted to make diet changes and not depend on medication. If I would have gone back, he said I would have seen one of his residents and not him. Also, any future communication would have been through his assistant, which was not a nurse.
What I took from that visit was that Entocort is okay to take longer than most MDs want to prescribe it and my diagnosis did change from LC to CC, per his pathology department. About 6 weeks after that visit the Entocort stopped working, and it was at that time I found this forum. So I have been trying diet changes ever since.
Hope it goes well for you, when is your appointment?
I'm seeing dr. Glen Alexander. In his profile it says he recognizes food plays a role along with nutritional deficiencies for the Pts overall well being? I have all of these other weird symptoms and just want the mad scientists there to rule some other things out. My appt. is June 1st. I have taken all major triggers out and since I am SIgA deficient I can't enterolab test. My poop is not terrible but I'm in a holding point. It's the other symptoms that are intolerable. I just want a thorough check instead of its all in your head....which it could be. My neurons definitely need some help!
I'll guarantee that the GI docs at the Mayo will scoff at my book, because the GI Department at the Mayo is very anti-diet treatment, and they are very hostile toward Dr. Fine and EnteroLab testing. In line with what Donna posted, I'm not aware of anyone from this board who has gone there and posted about any innovative treatment solutions or benefits that they derived from their visits.
Looking are the symptoms you are describing, you sound just like me (for the last 10 years, prior to last Friday). It sounds as though you may be magnesium deficient. Last Friday I started taking additional magnesium (I'm now taking 1,200 mg per day). Since then I've been breathing freely (for the first time in a long time), my BP is back to normal, my strength is back, and I suddenly have more energy than I know what to do with. I lost a lot of weight before I figured out what was wrong, but I'll bet I'll be able to gain it back now (something I couldn't do before). The docs at the ER during my Wednesday visit completely missed the connection, so I doubt that you can count on a doctor to discover this problem if you have it. Doctor's just don't seem to properly appreciate the importance of magnesium.
You may need to weight this carefully though, and run it past your doctor, because magnesium ions block neurosynaptic transmission by interfering with the release of acetylcholine. Since acetylcholine transmits nerve impulses, this action can reduce seizure activity. Maybe you wouldn't need a benzodiazepine med if you were not magnesium-deficient.
Magnesium can also act as a depressant for the central nervous system. Certain medications are known as magnesium-wasting drugs, and they deplete the body reserves of magnesium.
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.
Man! I was afraid of this.... I ordered some magtain and it's very interesting when I take my foot soaks at night I feel great for about 2 hours after. I don't want to waste my nerves and time going up there. Well....I'll give it a try and report back. I think they will be more open to LDN and possibly other tests then anyone here in Iowa. When I looked at the guys picture he was a bloated fat man....I was afraid of this. You don't know till you try!
The doctors most open to LDN are alternative medicine and naturalpaths. Have you looked for that type of doctor in your area?
I would be surprised if MDs at Mayo clinic would prescribe LDN. If you want to try LDN, you are able to obtain it on the internet. We have a closed LDN Facebook group, if you are interested in joining, let me know.
Good Luck!!
Hey thanks! I have been to most alternative therapy practitioners which has led me to this last ditch effort. My acupuncturists was the one who actually advised me to hit mayo. Not necessarily the gastro dept. that's just where I chose to start. Then I can say I tried everything. Thanks for the info on LDN. I may be contacting you...I don't belong to facebook. Has it worked for you? I know everyone is different. I'm a little worried about insomnia associated with it.
I was on LDN for this past year at varying doses, and I slept well at all the doses and generally felt good. However, it did not change my MC symptoms. I recently decided to stop taking it, because I did not want to take anything extra that isn't helping. I am just focusing on diet and supplements as tolerated.
However, I don't think it will hurt to LDN to see if it is right for you.
I just wanted to add that I also went to Mayo since I live near La Crosse, WI. I had my colonoscopy done there where they confirmed from biopcies that I had LC. I was told to try the pepto tab protocol of 8 to 10 tabs per day for 3 to 4 months. If the symptoms were still there I was told to make an appointment with a GI specialist. Unfortunately the pepto regimen did not improve my symptoms, but actually made them worse.
So... I then made the appointment with the GI specialist at Mayo. I was told that food had nothing to do with it, but if I wanted to I could eliminate fruits and vegatables from my diet. He then told me I could "up" my pepto tab intake to 12 to 15 per day. I didn't continue to take the Pepto as I felt my system was already pretty overloaded. He did offer Entocort to me, but when he listed off possible side effects I told him I'd think about it. From there I went to a naturopathic doctor, and finally found this board 7 months later.
I have not read all your posts, and am wondering if you've had a colonoscopy with a diagnosis?
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Oh yes...I have CC confirmed February of 2014. Thanks for your input. Maybe I'll cancel .....I do need tested for h. Pylori. Maybe I'll just go for that and to check out the scene? Who knows? Maybe the bloated fat man will be a miracle worker I'm soo mean.....
Well... my diagnosis and follow-up to the GI specialist were in 2010. Maybe they have learned more, or added specialists who have a better understanding of it.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
humbird753 wrote:Well... my diagnosis and follow-up to the GI specialist were in 2010. Maybe they have learned more, or added specialists who have a better understanding of it.
I wonder how much has changed in the past five years? And how long it will take until diet is the official number 1 treatment for MC in microscopic colitis? The recent 8-page article about MC on Medscape barely mentioned food. I think the only instance was this: On a scientific level, continuous epidemiologic studies should be encouraged not only to monitor incidence data but also to focus on environmental factors, such as drugs, infections, or food that might play a pathogenic role.
I am just amazed that not more than that comes up. It does not appear that the authors read Tex' book. Why not? It's not like there are hundreds of books on microscopic colitis out there. And I wonder if the gastroenterologists at Mayo have read it....
I am from Cedar Rapids, Iowa. I went to the Mayo Clinic in Rochester, too- for a second opinion. My first GI here in C.R. who was HORRIBLE, MEAN, and pretty much fired me for not taking his advice, said I had Crohn's Colitis. When I went to the Mayo, I took my book on the SCD by Elaine Gottchall. He said,(Dr, Kisiel) "He's heard of it, and was willing to let me try", but also went over the tier step of meds. Mayo did a bunch of tests, looked over my pathology reports (from first colonoscopy), and they didn't suspect Crohn's. I have a new GI at the University of Iowa and from my second colonoscopy, this past November, they have confirmed it is Microscopic Colitis. I have a check-up appointment there tomorrow. I am so excited to go, because I have new questions and want my blood work done again. The SCD isn't really working for me. I am kinda following it, but with many revisions. I am so glad to have found this site. I have learned a lot.
Good luck at your appointment. Will be excited to hear what they say.
Toni,
After some good advice on this board I'm cancelling my Mayo appt. and going to the university of Iowa. I've been there before and they are nice if nothing else. They are closer to home and I need to watch my stress level right now. I feel like a candle that is very dimly lit and about ready to be blown out. Hopefully they can run some tests so that I'm re assured I am not dying until more healing gets under way About the SCD diet. I'm having good luck with it but going just from the can and can not eat list from Elaine's book is not enough. Check out SCDlifesyle.com. They have an intro diet and then a step by step approach about adding foods in. They sell an E-book on their website. These two guys have been where we've been and have some good tips. I liked it because I needed A LOT of instruction on how to do things.
My experience with the Gastro docs at Johns Hopkins Bayview Gastroenterology department has been amazing. They are all over the diet and alternatives approach. I am seeing Dr. Alyssa Parian. She is sharp and in tune with traditional and non-traditional treatments. Her colleague, Dr. Gerard Mullin wrote "The Inside Tract Your Good Gut Guide to Great Digestive Health". He is a Functional Medicine Guru/Gastroenterologist. He's not taking new patients but is consulting with Dr. Parian. She is aware of LDN and wrote me a Rx with no qualms. She knows I have tried all the traditional treatments including Entocort and that I am not willing to go back on steroids except as a last resort.
Good luck at the University. Sounds like a good call to cancel the Mayo Clinic appointment. They sound like they fall into the hard headed inflexible category.
I had a realization that maybe my weird symptoms of shaky legs, lower than usual BP, can't get a satisfying breath, thirst that is never quenched, cyclical extreme fatigue aren't signs of tolerence to my benzodiazepine med. I challenged this yesterday by taking one during the day to see if my symptoms improved...can't really tell, yes and no. Regardless I'm weaning off of it by using a water titration method and going really slow. I'm scared to death to go to mayo since docs have failed me in the past. I must get over that. They are great up there. They have a process of elimination before they tell you it's in your head 
I want to talk to them about LDN. I don't know if you can take that while on a benzo. I don't see why not. Wish me luck guys! If there is anything you think I need to bring up or ask them, let me know 
I have all of these other weird symptoms and just want the mad scientists there to rule some other things out. My appt. is June 1st. I have taken all major triggers out and since I am SIgA deficient I can't enterolab test. My poop is not terrible but I'm in a holding point. It's the other symptoms that are intolerable. I just want a thorough check instead of its all in your head....which it could be. My neurons definitely need some help! 
I'm soo mean.....
About the SCD diet. I'm having good luck with it but going just from the can and can not eat list from Elaine's book is not enough. Check out SCDlifesyle.com. They have an intro diet and then a step by step approach about adding foods in. They sell an E-book on their website. These two guys have been where we've been and have some good tips. I liked it because I needed A LOT of instruction on how to do things.
