(Archived message from Jillg - original forum)

Hello,

I am starting a new thread here with a general discussion on nutrition.  I really like reading about nutrition in general, so I am going to undertake a little search of the medical literature and books in general to see what I can find out about nutrition and immunity.  I will share tidbits of general information as I come across them here.  If you happen to come across anything of interest to you, please share it.  Of course, we all must determine our own food tolerances, as each of us will react differently to what we eat.  This is not "one size fits all" information.  You'll have to determine for yourself and talk to your doctors.  Keeping a food diary of what you can tolerate is the best thing you can do, and approach new foods with caution. Read up on information on the masto websites, and most importantly, listen to your own body.  All of our reactions our quite variable.

If you can arrange to talk with a nutritionist at your local hospital, I would highly advise it.  I had the opportunity to speak extensively on several ocassions with one of the nutritionists here at our hospital that specializes in nutrition for cancer patients.  Since I have SM which is a neoplasm, I thought I would give it a try.  It has been very helpful for me, and also it gives me a sense of involvement in my own care.  We all need that to help our attitudes and coping, that is for sure!

I also liked to go to the talks on nutrition at the Experimental Biology meetings in the past.  Some very interesting stuff there! I am going to be reading up here in December about probiotics and immunity a bit, so I will let you know as I read.

I am a real believer that "you are what you eat."  I am doing this more or less to make myself eat better.  So people, hold me accountable to that!  Starting my New Year's resolution a bit early!

(Archived message from riverwn2 - original forum)

I NEED to lose weight but since I found out that I am diabetic and have SM, the weight is dropping off me naturally--except when I have to take Prednisone (but it starts again when the dosage is done).

When I was younger, I used to dream of living on a totally self-sufficient Farm, everything chemical free. I read Rachel Carsons "Silent Spring".and was horrified by the PCBs in everything. As I realized how hard my goals were to accomplish, I pretty much gave up--just blessed everything I ate , tried to make decent decisions and left it up to fate. I wonder now... how much of what we suffer as the human race isnt self induced. Sad that greed and govt laws support more chemicals/preservatives and less people growing food free from genetically altered seeds. Sometimes, it makes me want to yell, "LOOK at what we are going through, WE are your canaries and its coming YOUR way next."  Alot of good that would do me LOL.. a white jacket perhaps?? They already think most of us are crazy LOL.

Im REALLY interested too, to see what you learn! I m hoping the next generation will enforce more livable standards and we can make smarter choices for all our health.

Ramona

(Archived message from sandi - original forum)

Ramona! When I first started to realize OK, something is seriously wrong with me, I was working in an office at Coca Cola, one day out of the blue I just started feeling horrible, fainted and started vomiting. They got me outside, I went home and exactly a month later it happened again. My boss realized the bug spray man was there and he was there the last time it had happened. Told the guy to come do what he had to do in the storage areas only what was necessary and to never spray the office again, I was the canary in the coal mine and he was not interested in having the same thing happen to him!

I really lucked out that was a first real clue to something obvious being a coincidence! Other than direct eating something and it causing immediate pain or vomiting!  I lucked out again when I literally went from eating at the salad bar at Carls Jr every day  to suddenly after lunch almost dying of chest pains in the parking lot day after day and a new guy had just started working with me,,,, he was an EMT and doing this job on the side and told me about the new phenomenon of people getting sick after eating at salad bars and to stay away from them! The suflites hadn't even been figured out yet we just figured preservatives possibly so it helped me with clues again! So yep we are canaries for sure! There are a lot of wonderful businesses and corporations in our country,  and there are some things we've done wrong and learned from, I hope we can continue to use balance but common sense. It is the people that did demand more "perfect"  longer lasting foods ! ( the same generation that loved polyester YUCK!! They didn't want to see brown spots,  and non perfect looking food thus creating the demand for these preservatives! Now it's the opposite! It was so hard for me to find foods back then, there was one health food store in town and no internet!!! Now I have options!!!

Quercetin is very interesting

Here's a link to the wiki entry about it:
http://en.wikipedia.org/wiki/Quercetin

If any is interested in environmental medicine and the immune system, I suggest researching Orthomolecular Medicine.  I can't seem to go w/o it and avoid health issues. Just can't. And as time marches on, it is becoming apparent that all my issues are immune based.  

The Pauling Institute is also an excellent resource (LP coined the term Ortho Molecular).

Ccc,

  I've read some of the research coming out of the LP institute, and it's interesting regarding inflammatory processes and the immune system.

  I'm curious as to what specifically you've done that has come out of your orthomolecular reading, and what benefits you've gotten.  Specifically do you think it improves your quality of life and/or helps symptoms, and how?  I'd also like to know what exactly you've been reading that's helped you, so I can look into it. Thanks!

  I do agree with Ramona that we have to be really careful about trying new treatments that haven't been checked out by mast cell researchers.  In some cases there can be ingredients or substances that can cause us to flare or make us react in pretty unpleasant ways, when we least expect it!  I don't know that you feel this way, but I know that natural isn't always safe for MC patients.

The lead article on that cite, R., is written by the following person:

Kunin at 21 received his MD degree in 1955 from the University of Minnesota, and completed psychiatric residency training in 1959 at NewYork-Presbyterian Hospital's Payne Whitney Clinic. Kunin was a National Institute of Health special fellow in neurophysiology at Stanford University.

I've seen Ortho MD (but he doesn't call himself that) who did post doc under Pauling. He was recommended to me by a medical professional with patients who used him in tandem with their treatment at the Dana Farber.  

Also, Orthomolecular is where it started. The Pauling Institute is the current state of things.  Most of our clinicians do not have a background in bio-chemistry as these researchers do/did.   Second, they need to wait until consensus in their academies is attained before even beginning to bring it into clinical practice.

Now, on top of that, there is a strong push against patients doing things to make them use less pharmaceuticals. Unless it us changed to an analog or different form (as synthetic Vit d has been ... D2), it can't patented.  So you get my drift? Yet my statements in NO WAY implies treatment.  I also know that the web provides more than Orthomolecular medicine info that if followed could put risk in one's life (try some of these mushroom cites)

Oh that reminds me of an NIH fellow who was told to care for some soon to be deceased patients due to organ failure from eating toxic mushrooms (it was late '60 and was the fad).  He got in trouble because he cured them and they lived.  He had a background in bio-chem and decided he would try IV therapy of alpha-lipoic acid (the PL re omme de a daily dosage) It's now the cure for that.  But this MD was on top of what was being researched in the area of Orthomolecular medicine.

When I had cancer, I questioned treatment and essentially blew zillion holes in it until my very good MDs (and they were tops) agreed that the agreed upon treatment was not defined for a case like mine (yet they would apply it). Out of 3 oncologists, I got one to brake rank.  I had to say, okay I hear you but I want to know why NOT the other protocol.  She responded that she just had a physician on her office with a similar profile who said, " I know that is the protocol but I know too much and I want the other".  When I started to question again, the MD interupted, "I'm recommending protocol A but if it were me, I'd take protocol B".

I had one oncologist say to me, you don't want to take protocol B... On 5 years there could be such advances in science that you might regret it due to side effects.  My surgeon was visibly upset whenshefou d out I was taking protocol b.

Had I followed what most of the MDs were recommending (they decide as a group and then offer patients as they come through the door), I would have been very disappointed and scared when it was released 3 years later that the treatment I received for those with my profile had very high remission rates over extended periods.

But I was the walking dead later.  I definitely was leached out from chemotherapy.  I asked the oncologist about recovering health by treating deficiencies (it was obvious... I could hold my 40 lb daughter on my lap).  She said supplementation wasn't necessary because the meta-analysis .... Etc, etc.  That's when I went to the Orthomolecular practitioner and after 2 weeks, I began to feel better... And it continued that way.

I stopped after about 5 years because it was very expensive.  And I wil be honest, I didn't believe everything he wanted me to do and had a hard time being consistent.  What I did learn about myself is that every body is individual as to their bio-chemical needs.  We are all exposed to toxins on a daily basis.  Our DNA is unique (for each individual) in producing our needs and handling the environmental toxins.

With that said, the Pauling Institute has awarded researchers in the medical field.  One of which is a world leader in Vit D research.... many of you have probably heard of him.  He is my MD.  I choose him because of my collagen syndrome.  When the fellows took history on the first visit, I explained Orthomolecular medicine and they, sadly, had no idea of what it was.  Then the doctor came in with my records  in one hand, introduced himself and said: I know what Orthomolecular medicine is.  I just came back from the Pauling Institute. I'll write to him. (he was being modest, I later learned. He had been awarded for the second time by PL.)

Linus Pauling was awarded the Nobel Prize 2Xs... And like many pioneers in medicine with radical ideas, he was chastised much like when
Dr. Judas Folkman published his theory on angiogenisis:

""Nathan said Folkman worked patiently and politely to battle critics of his angiogenesis theories. "He was kind and he was decent and he was friendly always, even to his critics," Nathan added in a telephone interview.

"Judah had the most creative mind, ceaselessly creative. You could not have a conversation with Judah without having him think of the problem in a different way. He was just bubbling over with new ideas in many areas," Nathan said.""

So the bottom line: I'm alive because I read and ask questions.  There are many MDs who appreciate this sort of patient. And there are MDs who don't want the patient to ask questions. There are both bad clinician in Orthomolecular and Allopathic Medicine.... The difference is that the later is more consistently condoned.

There are a lot of people who have conditions besides MC that warrant equal care.  But it doesn't hurt to think outside the box.  And the idea that Orthomolecular is completely fraudulent and unsupported is incorrect. And anyone who solely relies on web sites to self treat, well they are probably quite dangerous to themselves.....anywhere... Regardless of having MC or not.

The Orthmolecular Medicine and Linus Pauling Institute was mentioned for intellectual discussion.

This isnt an argument about Traditional versus Holistic or Natural medicine ( I would question it even falling under those categories). You might be surprised how many medical people practice many types of medicine--besides traditional. The point is, it has nothing to do with Mast Cell Disease.. and as patients of a rare disease, I am very cautious of not only using something never tested for or advocated by a Mast Cell DR but one that could possibly cause a further sensitive reaction and endanger someones life.

Its hard enough to learn all that is necessary to be an advocate for your own healthcare without being led totally away from present day knowledge to something that has absolutely no connection to treatment for Mast Cell disease, and I am always suspicious when someone feels that mentioning a treatment isnt enough but pushes it full steam ahead where it has never been researched or documented as treatment for that particular life threatening disease. .

Show me confirmed documentation that this somehow has to do with our rare disease OR even better, show me that Dr Castells  or Dr Akins, or Dr Greenberger, or Dr Shwartz or Dr Afrin thinks this is a correct way to treat mast cell disease and I will take a second look.... but I would bet you cant, it isnt and I still wonder why this is being pushed on a mast cell disease board???