Consultation with my Primary MD-after Endoscopy/Colonstomy

Gabes-Apg · Post by **Gabes-Apg** » Thu Jul 10, 2014 10:05 am

Deb,
If you are keen to bring the foundation to fruition, a book you might be interested in, the promise of a pencil- Adam Braun

http://adambraun.com/book/

It is a great resource about what it takes to make a difference.

Gabes-Apg · Post by **Gabes-Apg** » Thu Jul 10, 2014 10:09 am

The other book, that also gives fantastic insight into the hurdles etc, and albeit the process was very politically aligned, is Michael j fox, always looking up.

drdebc · Post by **drdebc** » Thu Jul 10, 2014 10:11 am

Tex,
Re: Dr. Galambos...
Here is the correct information for him. I am typing it from his business card
Digestive Healthcare of GA
134 Mountainside Village Parkway
Building 500
Jasper, GA 30143
tel (706) 253-7340
fax (706) 253-7342
He also sees patients In Blue Ridge, GA however these appointments are made in conjunction with the Jasper office

drdebc · Post by **drdebc** » Thu Jul 10, 2014 10:14 am

Gabe,
I am interested in assisting this effort VS organizing and managing it. I have been retired since 2005. It makes me exhausted to imagine establishing a foundation at my age.

Post by **tex** » Thu Jul 10, 2014 12:35 pm

drdebc wrote:Tex,
Re: Dr. Galambos...
Here is the correct information for him. I am typing it from his business card
Digestive Healthcare of GA
134 Mountainside Village Parkway
Building 500
Jasper, GA 30143
tel (706) 253-7340
fax (706) 253-7342
He also sees patients In Blue Ridge, GA however these appointments are made in conjunction with the Jasper office

Thanks. I assume his Atlanta address/contact info is still correct.

Tex

drdebc · Post by **drdebc** » Thu Jul 10, 2014 12:40 pm

Yes, Tex
Apparently he is in both places plus a third not listed location in Blue Ridge
What a busy man!

Post by **tex** » Thu Jul 10, 2014 1:04 pm

drdebc wrote:Gabe,
I am interested in assisting this effort VS organizing and managing it. I have been retired since 2005. It makes me exhausted to imagine establishing a foundation at my age.

Whacha talkin' 'bout. In farm lingo, you're still a spring chicken.

I would be happy to take care of all the paperwork filings, and virtually everything else involved with setting it up, making sure that it is legal, and officially recognized as a non-profit, and taking care of whatever else is needed to get it off the drawing board and up and running. But I hate asking for contributions, filing for government funds, and writing and sending out press releases, etc., all of which would be a necessary part of daily operation in order to make it thrive, so member volunteers who have experience and/or expertise in that sort of work would be vital to the viability of the plan. Knowing how and where to apply for government funding is bound to be extremely important for a non-profit of this type. And knowing how to go about requesting private (or corporate) contributions, in order to get the most bang for our buck, will determine whether or not (or how rapidly) the foundation will be able to grow.

Early on, funds available to pay salaries will be non-existent to scarce, but as the foundation grows, it would be able to pay for such services, so once it gets on solid footing, the operation should go pretty smoothly. Once we grow it to a significant size, it should be like running an ordinary business.

Tex

drdebc · Post by **drdebc** » Thu Jul 10, 2014 2:16 pm

LOL, Tex!

I have caught a little cold which I am blaming on the generic of Endocort. Thus I am feeling sorry for myself.

I know how to ask for money. I don't enjoy doing it. However, I can write scripts that elaborate the need for support and that would make the prospective donor want to contribute to the cause. I can easily write and distribute press releases.

Perhaps we have a member who knows how to file for government funds. I know nothing about this. I detest bureaucracy and detail work.

On another note, I see Dr. Galambos on Aug 14. I intend to suggest he and Dr. Libert conduct peer reviewed research concerning MC. I think it would be a gold mine for them. Dr. Libert believes food is medicine. Our forum with over 1400 members might be a good population for a study. Speaking of my primary, I just received a call and her nurse said I need to take the Prilosec until I see Dr. Galambos. This is because of the positive diagnosis of Barrett's Esophagus. Hopefully, Dr. G will change it to something else when I see him next month.

I was looking at your list of autoimmune diseases that MC members have also had. I want to add one I had to the list. It is Idiopathic Thrombocytopenic Purpura
(ITP).

I searched Barrett's Esophagus on the forum and did not see it. Am I the only person who has had this diagnosis?

Post by **tex** » Thu Jul 10, 2014 6:34 pm

There ought to be a law against summer colds, but yes, that's one of the risks of Entocort.

I know of at least one member who is experienced at writing government proposals, but she may be too busy to devote any time to this, at least not anytime soon.

The problem with the members of this board, as far as research projects are concerned, is that we are not typical of most MC patients, and most researchers want typical, rather than exceptional. For example, most MC patients know that diet has nothing to do with MC.

There are quite a few AI diseases not included in those lists, and more are being added or reclassified every year. FWIW, I added ITP to the last list in that post.

Deb wrote:I searched Barrett's Esophagus on the forum and did not see it. Am I the only person who has had this diagnosis?

No, it's not exactly common among the members, but it's not rare here, either. I'm aware of at least several members who have mentioned it. And a few have mentioned Pre-Barrett's cellular dysplasia. Are you sure you did the search correctly? I did a search for Barrett's and received 63 matches.

Tex

drdebc · Post by **drdebc** » Thu Jul 10, 2014 6:50 pm

Hey Tex,
I applied holistic cold relief spray (Riteaid) and it is better. However, I hate the cough. Is TMJ on your list? I have that and I have a mouth guard for it. Also, is Otosclerosis on the list? I saw two MDs and they thought surgery was only 50/50 so I now wear hearing aids.

On another note, I just received my Vitamin D results from grassrootshealth.org. My D is 48 VS the 80 it was when I was taking InflamX Medical Food. I will start supplementing with 5,250 of D. I will fax this result to Dr. Libert along with what I plan to purchase tomorrow at the local health food store.

I hope we can create a foundation for Microscopic Colitis. I pray that many on our forum will assist. I am willing to attend any necessary meetings.

Take care, dear Tex,
I thank God for you!
Deb

Lesley · Post by **Lesley** » Thu Jul 10, 2014 11:40 pm

Deb - I will be 70 in a few months so you are, as Tex says, a spring chicken. I would also be happy to assist, but, given advanced brain death, I am too tired to take any sort of lead. I will do as I am told to help.

nerdhume · Post by **nerdhume** » Fri Jul 11, 2014 4:18 am

Tex, this is what I get from other forums. Even a mention of 'have you tried changing your diet?' is laughed at.

For example, most MC patients know that diet has nothing to do with MC.

A google search for a list of AI diseases produced this:
http://findthecommonthread.com/list-of- ... disorders/
Also go to Home/About Us, below the introductions there is some info on AI Disease and how they are trying to raise money for research in Canada. They mentioned AARDA, which I had never heard of, I will be reading info from that site later.
http://www.aarda.org/

drdebc · Post by **drdebc** » Fri Jul 11, 2014 6:35 am

Lesley,
Your post cracked me up! "I would also be happy to assist, but, given advanced brain death, I am too tired to take any sort of lead. I will do as I am told to help." I say something similar when I am in the presence of younger adults. I do hope we get a non profit going.

On another note, I purchased the Cuisinart Ice Cream maker. I made 2 containers of buttered pistachio and toll house chocolates for my 31 year old son and 5 of his friends who were visiting us, last week. I also made peach ice cream out of plain almond milk, stevia and fresh peaches. They devoured all of it. Next, I will make sorbet. Thanks for the inspiration.

drdebc · Post by **drdebc** » Fri Jul 11, 2014 7:15 am

Thanks, Gabes
Yes Michael J. Fox is an inspiration. I will see if my local library has Braun's book.

Post by **tex** » Fri Jul 11, 2014 9:03 am

drdebc wrote:Hey Tex,
I applied holistic cold relief spray (Riteaid) and it is better. However, I hate the cough. Is TMJ on your list? I have that and I have a mouth guard for it. Also, is Otosclerosis on the list? I saw two MDs and they thought surgery was only 50/50 so I now wear hearing aids.

On another note, I just received my Vitamin D results from grassrootshealth.org. My D is 48 VS the 80 it was when I was taking InflamX Medical Food. I will start supplementing with 5,250 of D. I will fax this result to Dr. Libert along with what I plan to purchase tomorrow at the local health food store.

I hope we can create a foundation for Microscopic Colitis. I pray that many on our forum will assist. I am willing to attend any necessary meetings.

Take care, dear Tex,
I thank God for you!
Deb

Coughs are rough, and they're hard on a lot of body parts, to boot. Thank goodness I haven't had one in a long time now, but rather than just try to tough it out when I do have a cough, I usually reach for max-strength Robitussin.

Surely TMJ is on one of those lists, because back when I was still reacting, I had TMJ so bad that on the worst days I could barely get my mouth open wide enough to allow me to slip a teaspoon full of soup between my teeth, and even that little movement was sheer agony. It went away after I made the diet changes, and it has never returned.

Actually, I never intended for those lists to be considered to be comprehensive (and they certainly were not). Those AI diseases were merely suggested to inspire members to think about their own situation and recall any AI issues that they might have. The poll did not require identifying any specific AI issues, it merely asked for an overall number.

Concerning hearing issues (and vision, for that matter), more than one member has pointed out that after they adopted the appropriate diet changes, and their digestive system had some time to heal, their hearing (or vision) improved enough that they specifically noticed the improvement.

48 is not a bad 25(OH)D result, but I agree with you — I like 80 better, and that's why I take a fair amount of vitamin D, even during the summer when I'm out in the sun a lot. My result in April of 2013 was 56. This year my April result was 95. During the late fall, winter, and early spring, I took 5,500 IU, and then cut the dose down to 3500 during the rest of the year. The reason for the odd "500" quantity is because my multivitamin contains 500 IU of vitamin D.

Hopefully I'll be able to finish the book that I'm working on soon, and after that I'll see if we can set up a tentative committee that will be willing and able to grow the Foundation into a successful venture that will define the future of research and treatment recommendations for microscopic colitis and other GI issues perpetuated by food sensitivities. In the meantime I'll do some more research to determine whether there is any advantage in selecting one state over any other, as the best choice for setting up a non-profit of this type.

And thank you for the kind words. I appreciate your help and your thoughts.

Tex