Consultation with my Primary MD-after Endoscopy/Colonstomy

[drdebc]

I requested this consultation because I am not scheduled to see the Gastrointestinal MD (G MD) until August 14. I had many questions

I already provided her with Wayne Persky's book. I spent a day preparing for this visit. I had a list of items I wished to discuss. I provided back up documentation I had obtained from this site. I am going to post each of these topics in greater detail as new topics.

Topics of Discussion:

1. Budesonide EC and my concern that it will not be tapered for a long enough period. She promised to intercede if necessary. However, she trusts the G MD and thinks he will work with us.
2. The fact that based on the endoscopy results, Prilosec was prescribed. I discovered that the biopsy revealed Barrett's Esophagus.
We discussed Melatonin to reduce stomach acid. She told me about Mark Stengler's study (I had the backup in case it was necessary). I was amazed!
The endoscopy also showed a benign fatty tumor of the duodenum, diverticulitis (which my aunt has), and inflammation of the bowel.
She will examine the biopsies, and consult with the G MD in order to determine if I really need to take Prilosec. I will do what she recommends. She hates Prilosec and says she is absolutely against its long term usage.
She also provided me a 30 day free guest pass to a site called uptodate.com so I could research Barrett's Esophagus. (my uncle died of Cancer of the Esophagus) After I obtain research, I will post it here. If you want me to research other topics, let me know and I will post them.
3. I have been on the Metagenics Healthy Lifestyle plan since February. Before Budesonide EC, many foods caused D. Thus, there is a need for Panels A1 and C1 Enterolab. Low and behold, she said this is one of the best labs in the USA. She has heard Dr. Fine speak at a number of medical conferences. She enthusiastically ordered these panels for me. I will post another topic about how to get these tests covered by insurance. She made me aware of insurance industry changes that affect an MD's ability to order lab tests. And yes, she had already done the blood test to rule out IGA. Therefore, my test results should be accurate.
4. She does do the 25 (OH) Vitamin D test. My last results were 80 ng/ml, perhaps because of the Metagenics supplements I was taking for inflammation. These supplements have been discontinued while I am on Budesonide. I ordered another Vitamin D test from grassrootshealth.net. I should receive the results in a week. I will add Vitamin D as needed.
5. We discussed the vitamins recommended for MC. She thinks I should take them while I am on Budesonide. They are: fish oil, flaxseed oil, B12 sub lingual, folic acid, magnesium topical gel, L-Glut amine powder, Glucosamine, Vitamin C. I am also taking/using pine tar soap for eczema, Allegra as needed for chronic rhinitis, Tylenol regular strength as needed for pain.
6. My goal is remission for life. (I have had D for 30 years!) When I receive the Enterolab food sensitivity results, I will avoid any ones I am sensitive to. I will continue with the UltraInflamX medical food once I have tapered off of the Budesonide.
7. I was concerned that I would gain weight on Budesonide. I am proud to report that after one month on it, I have lost 2 more pounds.

[tex]

Wow! You have an awesome physician. Lucky you!

Tex

[drdebc]

I thank God for her every day!

[Sheila]

Wow, Tex is right. Your physician is one in a million. Did you add your doctor's name and location to the recommended doctor list? Someone like that would be worth the drive for those in your part of the country. Selfishly, I'm going to be staying very near the N.C./Georgia state line for a few months and it would be a relief to know there is such a terrific doctor within driving distance.

Sheila W

[drdebc]

Her name is Cynthia Libert. Here is her web site: http://drlibert.org/. She IS one in a million! And the gastroenterologist, Dr. Michael Galambos is the only one she trusts. He is a member of Digestive Healthcare of Georgia, PC digestivehealthcare.net. Their main office is in Atlanta. However, Dr. Galambos also practices in Jasper, GA and Blue Ridge, GA. (I saw him in Blue Ridge) My out patient endoscopy and colonoscopy were at Piedmont Hospital in Jasper, GA. Blairsville, GA is 20 miles from Murphy, NC.

You are welcome to stay at my home should you wish to consult with Dr. Libert and the drive is too far. We love company and as a member of this site, you are certainly a welcome guest.

I shall add both of them to the list of recommended MDs.

Deb

[tex]

Good idea Sheila,

Deb, I added the info. You might check to make sure that the contact info that I listed is correct. I didn't see a Blue Ridge address listed for Dr. Galambos, and I decided to list his hospital contact website, rather than his personal website.

Tex

[drdebc]

Thanks so much for adding these positive MDs to our site. I know it is your site. However, I choose to call it OUR site.

In my consultation with Dr. Libert, we discussed the fact that MC is a gold mine opportunity for research. She agreed and said we would need a large sample size. I am thinking...Could not our site and those with the diagnosis be our sample? Hum... I am a retired PhD. What do we need to do?

Let's get on this, Tex!

[tex]

Personally, I believe that the first thing we need to do is to set up a non-profit foundation so that we can solicit contributions to pay for research, and to promote public awareness of the disease. Money is king in the land of research. That's why most research is funded by Big Pharma.

But Big Pharma is not going to fund research that supports diet changes as a primary part of the treatment program. That's why Crohn's and UC brings in big bucks for research (because drugs are the treatment of choice), whereas MC is a homeless orphan.

Tex

[drdebc]

Do you have any ideas as to how I should proceed or shall I simply do a google search? I don't want anyone else to suffer as I have for 30 years.

[Gabes-Apg]

Deb

the harsh and sad reality is, while big pharma hold majority of the trump cards of our health systems, good quality research will be a HUGE challenge. If you have the energy and time- Go For it!

keep in mind, the belief across the fraternity is that MC has 'Slightly inconveniencing Diarrhea'
being trapped in your bathroom for days/weeks/years is not taken seriously.
the other hurdle is that quite a few of the symptoms of MC, are not gut related and are not given due consideration.
The immune system issues is not 'definable' via a blood test, (or urine or poop test) so again they are not given due consideration.
the interaction with Thyroid, hormones, adrenals, etc is also not given due consideration.
MC is frequently not diagnosed correctly and people have to live with the diagnosis of IBS and Chronic Fatigue.
Until all the realities of MC are acknowledged and diagnosis process is improved there is a very limited scope to get quality research

Plus, The medical fraternity is very very tribal, if you go against the tribe, you are outed. Not many professionals are willing to risk being outed of the tribe. The govt system that pays doctors and specialists, is programmed by big pharma. (also, who does the coding of conditions for the health/insurance systems??)
Not many are willing to risk their income and/or career on something that only affects ??0.001 percent of the population
(and where diet and lifestyle changes help majority of patients)

[Sheila]

Thanks so much for the link. For years my late husband and I visited good friends in Hayesville and love the area. I'm renting a house in Franklin,NC for a couple of months this summer and that is certainly within easy driving distance. I am so happy to know there is an excellent doctor fairly close by. I have a hunch my friends are patients of Dr. Libert. I know their doctor is holistic, a woman and has an office just 10 minutes from their house.

Thank you so much for sharing. I just love Potty People because we do care about one another and are always willing to help one another. That wonderful attitude starts at the top with Tex and Polly and the other old-timers, and has spread to the rest of us. Thank you for your offer of hospitality. It would be fun to meet another member in person and share experiences.

Sheila W

[drdebc]

You are correct. I read your reply about 4 times and I must admit that you are stating the reality of this situation. It really frustrates me that there is no FDA approved med for our condition. I am overly optimistic.

It would be great if there was a foundation for MC. But, as Tex stated, this would take a lot of money.

[tex]

Deb,

I've posted about this before, and one of the threads can be viewed at the link below. There seems to be a lot of interest in this project, but as I outlined in several of my posts in the thread at this link, bringing this to fruition will require a lot of time, dedication, and hard work. Setting up the foundation would be easy enough. I/we can easily set up the foundation, write the bylaws, apply for IRS approval of not-for-profit tax treatment, etc., but most of the hard work comes after that in the form of organizing a board, holding regular meetings, establishing the details of the goals of the foundation, and taking care of day-to-day operations.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17835

I agree that trying to change attitudes in the medical establishment is like trying to stop a runaway freight train without brakes. To do that, we would need to create a foundation and grow it to the point where it would have considerable clout (and research reports in hand, to back up our claims).

I believe that among the membership here, we have the brainpower, experience, motivation, and tenacity to carry this out, if we really want to do it, but it would take many years of dedicated effort.

Tex

[Gabes-Apg]

frustrates me that there is no FDA approved med for our condition

How will that help???
The only people that benefit in that situation are the shareholders of big pharma
(And the doctors who get the kickbacks for prescribing the med)

How does band aiding symptoms for short/med period of time help the patient?
Like many of the people on this forum, long term wellness doesn't come via a FDA approved med.

Where is the awareness to look at genetic factors, linked to these conditions, get to the root cause that is causing the symptoms, and take the necessary measures to assist future generations to minimise having to live with ongoing issues and symptoms?
When most of the necessary changes that can reduce the incidence long term is reliable testing, then following diet, nutrient and lifestyle to counteract cell deficiencies/anomalies.

The technology for most of the testing is already there, it's available and it could be made more affordable.
The knowledge about nutrients, what makes effective digestion and the millions of processes that occur within every cell of our bodies every day is very thoroughly documented. IMO more research won't help, while ever the medical system in our countries is actually just a puppet, where big pharma hold the strings, no amount of research will change the system, it is too embedded.

[drdebc]

Tex,
Thanks for directing me to the link about establishing a foundation for MC. There appeared to be a lot of interest in this, last year. And members indicated a willingness to assist in this effort. Perhaps it is time to post this topic again? I am like you in that I am one of the older forum members and I do not have the energy of some of the younger ones. Yet I have more time than others in that I am retired. I am willing to assist, and I could attend a meeting, at my expense.

How many active members does the forum have?