Pico de Orizaba

Pico de Orizaba
Taken from Huatusco, Veracruz, the closest town to Margarita's family's ranch.

Thursday, December 31, 2015

Letter to a fellow traveller... Imminent death or...?

The fellow traveller is a friend of a friend recommended to me because of what I wrote her about Aspirin, Insomnia, The Pineal Gland and the hormone Melatonin (not to be confused with Melanin).  The fellow traveller is a 45-year-old diabetic man, father of 2 young children with 15 stents in his coronary arteries...  "Fortunately" for him, his cardiologist did a biopsy or sampled his arterial plaques and found 50 bacteria and 30 fungi in them...  But, the question is "what was the cardiologist's response to finding those bacteria and fungi?"  In 2015, we now know of the small intestine-heart immunological connection within heart disease.  We also know that the colon can function as a preventer of heart disease when it comes to Enterolactone and Bifidobacterium, if you have healthy intestinal flora and eat enough plant fiber.  But will the cardiologists consider this perspective?

Oh, just so you know; all of my recent cardiac issues since August are related to the lack of understanding by part of the doctors of how medications interact with the body and how to prescribe them. Aspirin turns off the pineal gland that secretes Melatonin that is responsible for not only the body's clock (the circadian rhythm) but also the cycle of secretion of T4 by the Thyroid, Adrenaline by the Adrenal glands and Insulin by the Pancreas.  I was told to take Aspirin and the Beta Blocker at night. But, Aspirin causes night time awakenings and the Beta Blocker can cause arrhythmias and heart cramps (Prinzemetal Angina)... that awaken the person not long after falling asleep.  My current cardiologist's response to my desire to decrease the beta blocker to remove the arrhythmias was the reverse; "If anything, I would increase the dosage!"  The anti-hypertensive he prescribed caused migraines, fatigue and "auras".  Today I'm not taking the anti-hypertensive, am taking half the dosage of the beta blocker and taking the aspirin 4 days per week and in the morning.  I'm also taking Melatonin 3mgs 2 hours before going to sleep.  My arrhythmias have ceased.  My sleep is almost perfect, my nocturnal hypertension has decreased dramatically, I don't awaken to heart cramps or taquicardias and I almost feel normal.  Thanks DOCTORS!

Back to the letters that you may find informative for your own needs:

Fellow Traveller:  Hi there, I'm one of J's online friends. She mentioned you were doing a bunch of research around heart health. I'm doing that too and would love to chat with you.
Do you do google video hangouts or Skype?


Me:  I've never done one or the other... Since moving to Mexico 13 years ago, I "lost" my English Language voice... (basically 13 years only speaking Spanish).  J tells me that you are 45-years-old suffering from some form of heart disease.  Well, that puts you and I into a special club: the supposedly 10% of those with heart disease below the age of 70 years...  I'm 46-years-old and the issue came as an incredible shock to me 10 months ago.  I've spent the past 10 months since the heart attack battling mediocre cardiologists here in Guadalajara Mexico and contradicting them left and right with what I've found in medical-scientific literature.  Needless to say, they don't like me very much.  I'm assuming you live in the U.S. which makes you semi-fortunate being that you have access to more than two sides of medical science: the conventional, alternative and naturist approaches (all highly trained).  Here in Mexico there are only 1.5 options: the conventionally trained on the most extreme right U.S. model greatly influenced by the pharmaceutical companies that have full reign here in Mexico (what is banned by the FDA in the U.S. is not banned here); since the new Mexican cardiologists feel that they have "arrived" at the pinnacle of medical education since they believe that they are learning the best of the best medical technique since it is the U.S. model, they believe that there is nothing else they could learn; such as the connection between respiratory infections and heart disease or Vitamin D deficiency and heart disease or Helicobacter Pylori and heart disease... And they believe that the answer to everything is prescription medication, even if what they prescribe may actually be making the situation worse for their patient.  For instance, it is clear that Aspirin at night causes insomnia, which causes "inbalances" within the endocrine system and causes hypertension and other exhaustion related problems.  Aspirin taken every day also causes digestive issues.  Now, if you develop malabsorption issues caused by aspirin taken every day, you will have additional heart problems.  I take the top/newest betablocker.  But, it is clear that the betablocker causes arrhythmias for 4 hours after taking it...  But, the cardiologist believes that it may be an issue of needing to increase the dosage when I find that decreasing the dosage removes the arrhythmia...  As for the other half option here in Mexico (a type of chamanism), well, the herbal/natural remedies may be very questionable as is the "intellectual" capacity of the natural healer.  I do believe that we must understand genetics and be able to look at blood tests and the corresponding levels along with other technological anomalies, which a natural healer here wouldn't be able to do.  

Another thing that the Mexican cardiologists don't look at (probably because the tests aren't available in Mexico) and really have no interest in is chemical/heavy metal toxicity and allergies.  Along with my genetic testing done this past summer, I also had a toxicity test done.  I am almost certain that I can show the cardiologists the cause of my issue; when you understand the cause you are closer to the cure and you are also better capable of preventing future events.  But if the doctors have no interest in the cause, then they don't truly have an interest in your health.  This is the problem I've found.

Feel free to respond as you wish.  Maybe I have information that you may find interesting.

Ross

Feller Traveller:  I've been running down the internet rabbit holes looking into any old quack theory that has no downside and been adding it to the kitchen sink approach. I have diabetes which has screwed up my arteries, I'm looking at 15 stents on the angiogram  and have a surgical consult for the atrery that feeds the left ventricle, as that is apparently totally screwed. I have angina pretty bad and cant get my bpm past 120. I'm 45 with 2 young kids.

So far I have come to the conclusion that the 50 bacteria and 30 fungi found in the plaque probably is the culprit.  So I started taking a Sodium Chlorite with Citric acid concoction that is a little questionable but my intuition said I needed to take it. I have also worked on my gut bacteria with probiotics, resistant starches and fiber. Again from following intuition.
The Linus Pauling therapy with vit c seems like a good adjunct and I have been making my own lipisomal vit c. I also really like the Thorne brand turmeric for inflammation as well as all the other miracle stuff turmeric does.


I have low vitamin d and have been taking supplements for that but I will look into that closer as it seems to go hand in hand with calcium....which I am taking vit k2 to try to dissolve the calcified plaques.

I'm taking a bunch of other stuff too as I read up on things, my sister is a naturapathic doc and I get vitamins at cost. I'm going to the most alternative cardiologist in Seattle but have little faith that she will help much....its all about cholesterol and statins she says...diet and exercise too. SIGH...such a pain in the ass to find people who want to look at reality and try to cure vs treat it since the profit is in treating it while you slowly die.

Anyway, check out the Chlorine Dioxide stuff....its a bit quacky but the first dose went straight to my heart and did some stuff...I'm still taking it and it seems like it might have reversed diabetes.

I did the genetics test and chatted with Jenny about it....there is a good resource, she has been down a bunch of rabbit holes. 

If you have read any good books shoot me a list....if you want my list of supplements in a spreadsheet I'd be happy to share.

Best of luck, FT

Me:   I was going to respond in depth to your message later on in the evening.  Although it is New Years Eve...  My father died on New Years Eve (I inherited his disease) 41 years ago (he was 34-years-old and a doctor).  So, I grew up without the New Years Eve enculturation...  However, after your mentioning throwing a few good books your way, I decided to quickly write you.

The last book I read is by the British Epidemiologist Dr. David Grimes called "Vitamin D and Cholesterol; the Importance of the Sun".  It clearly isn't quack theory but clearly goes against the 60 years of faulty medical science of the Cholesterol--Heart theory.  Plus, it is incredibly informative and fascinating how he connects so many illnesses to lack of sunlight.  What does surprise me though and makes me wonder if he felt pressured to be able to publish the book by stating the miraculous healing affects of Statins regarding heart disease and cancer.  I am almost certain that "the powers that be" would have squashed his book had he both debunked the cholesterol myth and written against statins.  However, his argument for statins is that they function as immunological and D hormone precursors (not cholesterol suppressors) and that their function actually came as a surprise and has not been explained or researched since the faulty medical scientists continue (in 2009) focussing 100% on cholesterol.  Truthfully, he spends little time on Statins, although his message was strong and clear enough for the pharmaceutical companies to be happy with him.  For me, what is most interesting about Grimes' argument is his focus upon Latitude.  I had absolutely no idea that England, Ireland and Scotland were so far north of New York City/New England.  In fact, that they are almost in the Arctic circle and are at the same level as Alaska.  So, if anyone should be an expert on Vitamin D deficiency and Ultraviolet Rays, those from the British Isles and Scandinavia should be...  Not only does Grimes focus upon Heart Disease, he focuses upon Lung Cancer, Diabetes, Hepatitis, Tuberculosis, Multiple Sclerosis and Bronchial infections.  For me, "Vitamin D and Cholesterol..." is a 600 page must read. 

Another wonderful book to read for solidifying the argument against the heart-cholesterol argument is by the medical journalist Gary Taubes"Good Calories, Bad Calories: Challenging the Conventional Wisdom on Diet, Weight Control, and Disease"... You may wish to look at his 2002 New York Times Magazine article "what if its all been a big fat lie?" http://www.nytimes.com/2002/07/07/magazine/what-if-it-s-all-been-a-big-fat-lie.html.

I have a few books by Naturapathic Doctor, Michael T. Murray, who also sits on the board of regents of Bastyr University in Seattle (the first naturapathic medical college in the U.S.).  I have some problems with his very vegetarian-biased and low-fat focus.  After reading Udo Erasmus' book "Fats that Heal; Fats that Kill" (Thanks to Jenny) and Taubes "Good Calories, Bad Calories" along with so much published by Chris Kresser, I worry about the people who preach low-fat diets.  But, we should have an understanding of the different lipid options and in what form they come, such as over heating and modified etc...  Also the hour that we consume them.  There's a wonderful cancer specialist from Spain, Dr. Alberto Marti Bosch who claims that we should avoid animal protein in the evening since it causes acidity, which is the #2 "friend" of cancer (#1 is glucose).  

I cook with fresh turmeric.  But, one thing you must understand is that the active ingredient in turmeric (curcumin) doesn't work without the active ingredient in black pepper (piperin).  So, when you purchase turmeric as a supplement instead of turmeric as a cooking ingredient (which makes it much more expensive) you must check the label to see if it has piperin).  When I cook with turmeric I automatically use black pepper too.

I'm assuming that your diabetes is Mellitus II, since you can't reverse Mellitus I.

Do you know what bacteria was found in your plaques?  Grimes mentions Helicobacter Pylori, Chlaymidia, possibly candida albicans and a certain Pneumococcus.

There is a risk with taking too much vitamin C.  Actually, I've read that the effective dose of Vitamin C is 500mgs per day; anything above that is waisted...  Taking 3,000mgs can cause certain mineral imbalances in the heart and arteries, such as copper, which is necessary for heart rhythm (if I'm correct) and for arterial/endothelial flexibility.  If I'm correct, copper is necessary for creating collagen/elastin which is extraordinarily necessary for preventing hardened arteries...  

I take (along with Aspirin, Effient and Nebolovol):

Coenzyme A
Coenzyme Q10
Selenium
Zinc
Arginine
Sunflower Lecithin
Vitamin C 500mgs
Omega 3 with 1,000IUs Vitamin D
Vitamin D 50,000IUs once per week
Fermented Cod Liver Oil
Melatonin 3mgs

And at least 6 tablespoons of ground flaxseeds per day...  

I found that red meat immediately raises my bp and that chicken causes sleep problems.  I imagine that the issue with red meat is something about the type of protein.  But some people wonder if it's a sensitivity to the hormones and other chemicals.  I try avoiding all conventionally raised meat/poultry.  But, Mexico is horrible for organic produced foods.  Most of my animal protein comes from fish (Spanish Mackerel, Chilean farmed salmon and non-Chilean sea bass) and fermented leche that I prepare in my kitchen.  I also prepare my own fermented red cabbage (sauerkraut) and Kimchi...  

I run at least 19 miles per week divided into 4 runs.  My diet is low carb (no refined carbs and no wheat products), no industrial vegetable oils, very little commercial products, no bacons/hams/cold cuts...  no canned or bagged goods.  Fortunately, my passion since adolescence is international cuisine and I'm very comfortable in the kitchen.  However, the problem with removing wheat products is that I am forced to exclude most Italian, middle-eastern , (Turkish/Arabic/Persian) and central Asian cuisine along with most East Asian cuisine (since Soy Sauce is prepared with wheat flour)... I don't eat white rice and brown rice here is a bit questionable...  I'm certain I was on the verge of becoming diabetic 2 years ago...

Due to my father, I don't have a colon or a rectum (preventative surgeries).  So, I may have some significant absorption issues that I'm certain affect my heart and what vitamins and minerals enter and stay in my body.  Lacking a colon causes hydration issues and also brings up the question of probiotics such as bifidobacterium.

Speaking of bifidobacterium:  Something that you MUST check into:  Enterolectones.  I don't know if Grimes mentioned it.  But it was found that those with the highest levels of enterolectones had the lowest level of cardiovascular disease and cancer.  Enterolectones are produced by bifidobacteria in the colon they produce from digesting plant lignans.  The #1 plant lignan precursor for enterolactone is Flaxseed.  

I'm certain that there is a lot more information I can share with you as my head clears.  However, at them moment I must get ready for my run.

Living in Seattle makes it incredibly necessary that you find a way to raise your vitamin D.  The best form is from the sun.  But, that's the problem of Seattle before and after July...  I dreamed of moving to Seattle.  But, when I was about to move to the Northwest, I suddenly took a turn to the extreme south, met my wife in my 3rd week in Mexico and I imagine I saved a few years of my life.  In late December I can get a tan running without a shirt for an hour here in Guadalajara.  I'm certain that if I had stayed in NYC, I wouldn't have lived to see my 40th birthday.

Keep in touch.

Me again 8 hours later:  Now that your cardiologist knows that you have the bacteria and fungus in your arteries did they put you on antibiotics to remove the problem of the bacteria and anything else that would remove the problem of the fungus?  Did they say anything about the relationship of the "two" in your plaques?  After reading the Grimes book, I would believe that your heart disease issue is an issue of bacteria and fungus and removing it would bring you healing...  

When my interventionist cardiologist did the angiogram/angioplasty, he didn't take samples of the plaque contents.  10 months later, I have a thousand times better understanding of heart disease and stent proceedures etc than I had when we saw the guy two days after the small heart attack... caused by what?  Looks like some sort of an allergic reaction.  But I also had some sort of a gum infection in the back of my mouth...  We had returned from 7 days on the coast/beach just north of Puerto Vallarta...  Strange time to have a heart attack; 12 hours after returning to the city 1,600 meters (5,200 feet) above sea level.  Two times when I mentioned the heart attack the day after returning from the Puerto Vallarta region friends said, "that's strange! Friends of mine and I went to the same place that same weekend and one of my friends also had a heart attack..." or "the day after returning to Guadalajara from Puerto Vallarta, the friend who was with me had a heart attack!"  In August my hair toxicity results came back with semi-high levels of mercury, lead, aluminum and uranium.  The river that passes next to Guadalajara and through its industrial zone and dumps into the Pacific Ocean just north of the highly touristic zone of Puerta Vallarta is considered the 3rd most contaminated river in Mexico...  Greenpeace and other environmental organizations have investigated and reported heavily on this Santiago River...  But, when I mention this to the doctors, they say, "we've never heard anything about this!"  My level of mercury toxicity puts me at a 30% higher risk for myocardial infarction...  

David Grimes mentions diabetes and a relationship with vitamin D levels.  I also believe he connects it with microbial infections although it could be that he was focussing more on Mellitus I.  If I'm correct, like cancer cells, bacteria also feeds greatly on glucose. For this reason, diabetics and "pre"diabetics tend towards developing infections frequently.  But, Grimes would say that Vitamin D deficiency leads to immunological deficiency which, in turn, leads to microbial overgrowth, regardless of glucose levels.  Granted, the glucose levels don't help.  However, maybe what truly comes first is an issue of lack of Vitamin D.  

Another thing: I've read repeatedly that the issue of Diabetes may be the same as the issue of Magnesium deficiency at the tissue level (not serum Magnesium).  Unfortunately, we can't test tissue content of magnesium here in Mexico.  But, you can have those tests done in the U.S.  You mentioned calcium going hand-in-hand with vitamin D.  If you read indepth about Magnesium you'll find that the three make a very interesting triad.  Magnesium and Calcium balance each other for muscle reactivity.  Magnesium relaxes the muscle while Calcium tenses it... So, if you have too much calcium in your heart, you will have high bp and maybe experience heart cramps.  Magnesium is a natural muscle relaxant and should lower blood pressure.  Three signs that you have a magnesium deficiency:  1) muscle ticks; 2) muscle cramps in the calve or the foot especially when you are asleep; 3) very dry mouth/unsatisfyable thirst (typical of diabetes).  

I take the Arginine for angina.  Breathing exercises help some.  When you hold your breath or you let the air out very slowly during the deep breathing exercises you are causing carbon dioxide to be maintained longer in the blood stream which, in effect, causes the production or release of more nitric oxide (the same thing prescribed for angina).  Since I worry greatly about the correctness of the information I share, I decided to look for some articles on the subject, although I didn't find what I had read a few months back.  This one is very interesting about the Buteyko Breathing Method:  http://articles.mercola.com/sites/articles/archive/2013/11/24/buteyko-breathing-method.aspx.  I noticed that Mercola mentioned that adequate levels of carbon dioxide in the body functions as an antibiotic.  Thinking about how we breath or what may cause us to breath poorly makes me think about childhood trauma (my father died suddenly when I was 4.5-years-old and the family entered into a horrible chaos.  I was diagnosed with his disease--Familial Adenamatous Polyposis--at the age of 12 and had my first preventative surgery--colectomy--at the age of 13.  Other things happened during my childhood.  But I will spare you.)  I mention this because a lot of things happen in the private lives of children that those children may bury in the attempt towards being "normal" and getting along in the world.  However, the stress from the buried events may resurface in how we relate to others or situations or affect how we breath especially in certain sitautions... How we breath may affect how our arteries function.  Mental stress can also cause acute inflamatory responses... For instance, why would my bp rise 30 points in a matter of seconds and then return to normal a few minutes later?  It couldn't be an issue of diet... cholesterol... saturated fats... not even the issue of an alergic reaction.  Hypertension treated with anti-hypertensives canNOT be the issue of sudden changes in the arterial walls.  It must be something else and be treated likewise... If it is a question of momentary stress or breathing changes, we must address that.  When I enter the cardiologists' offices, my bp automatically rises.  Why? Because I know we will be in conflict.  I hire them to listen to my medical history, symptoms, concerns, ideas and use their medical "expertise" to bring me to a better situation.  But, what I find is that they don't want to listen or think ("out of the box") and look at the situation as a medical-scientific puzzle needing solving.  I don't want them to take my pressure without looking at my blood pressure log that also mentions what I ate, how I slept, what happened during the day etc.  I don't want them to prescribe me 5 medications without truly knowing my blood levels or my physiological condition.  Should you prescribe a diarrhetic to a person without a colon?  Should you prescribe an anti-hypertensive that removes sodium from the body to a person with borderline-low or low sodium levels?  I have low testosterone levels.  Another thing you may wish for considering:  Testosterone shuts off the FMO3 gene that is responsible for the production of TMAO.  High levels of TMAO in the blood stream causes cholesterol stickiness.  So, if your testosterone levels are low, then it is probable that your TMAO levels are high.  This is a bit complex since it is believed that intestinal bacteria (especially the bacterial overgrowth called SIBO) produce TMAO after digesting animal protein.  So, what relationship would your or my gene and hormone have to do with TMAO produced by bacteria?  

While I'm still side tracked on this topic of non-cardiac issues that cause cardiac issues that maybe the cardiologists have no interest in considering:  For two years of almost monthly blood tests, the only aspect of my blood test results that does not improve with changes in diet and activities (such as exercise, relationships, sleep and work) is the Immunoglobin M (IgM) deficiency.  A few months ago I decided to do a search on IgM deficiency and cardiovascular disease and I came up with something very interesting:  IgM not only is responsible for preparing anti-bodies to attack foreign invaders, but it is responsible for removing from our arteries oxidized LDL cholesterol and apoptosed cells (cells that commited suicide when they find themselves mutated, poorly divided or cancerous)...  In Mexico there aren't tests for oxidized LDL.  But, if we know that the biggest risk of cardiovascular disease is not LDL cholesterol or total cholesterol but oxidized LDL cholesterol...  And the issue of plaques and blockages is that of not only dislodged blood clots but also any other "object" that can cause a "log jam", then my cardiologists should be worried that my IgM is not doing its job in removing oxidized LDL cholesterol and dead cells from my body.  This has nothing to do with what I eat.  Nor does it have to do with what they prescribe me.  Every day that they "control" my blood pressure and my blood thickness and platelet stickiness, while ignoring my IgM levels, my arteries are becoming increasingly filled with apoptosed cells and oxidized LDL cholesterol...  The next heart attack will occur because of an immunological issue, because they have no true interest in solving the problem.

But back to where I was headed:  It's easy to look at structural, bio-physiological and dietary issues.  But, what if the base of the problem is a series of difficult childhood experiences?  A few days after having the two stents placed in my heart I discovered this very interesting study:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010612/ on childhood misfortune and Acute Myocardial Infarction.  Months later I stumbled across Dr. Sinatra's book "Heart Break and Heart Disease".  While he has gotten on my nerves over the past few months with all of the supplement sales his organization sends my email which makes him seem more a door-to-door salesman than a thoughtful cardiologist, I appreciate what he says in his book about how many people with unresolved interpersonal conflicts caused by childhood traumas die young of sudden heart attacks or not so sudden, especially those who have none of the markers that warn of heart disease or an impending heart attack...  

I'm going to leave you with this.  I'm certain that it is much more than you expected.  However, I think it is incredibly important that you understand that there are so many ways of looking at your experience... Maybe somethings I mentioned will strike a chord with you.  Maybe you will look at your exams differently.  Maybe you will see something in them that you hadn't seen before.  The idea is to find someone who is willing to consider what you see or know to be outside the traditional paradymn that may truly help reverse the negative process.  The Russian who created the Buteyko breathing technique was about to die from hypertension in his mid to late 20s.  He had bp readings of 220/110.  He died at the age of 80.  But, he didn't have stents in his heart arteries...  So it wasn't imperative that he find a cardiologist who truly cared about his situation and outcome.  The moment you are diagnosed with heart disease you become a statistic.  What do the statistics say about you?  What do your doctors believe about you as that statistic?  What are the probabilities?  I am certain that my cardiologist say, "we placed the stents in your heart to give you a few years free of a massive heart attack.  Isn't that enough for you?  What do you want?"  

Ironically, stents place us at greater risk of sudden blockage within 5 years...  It is almost guarranteed that my two stents, especially the medicated stent, will become blocked before the non-stented artery becomes blocked with a new plaque.  I learned this in the week after having accepted the proceedure...  Before having the stents placed, I never noticed experiencing angina.  Now I experience angina.  Before taking medication for preventing a future heart attack or heart failure, I never knew arrhythmia... Today it is a daily issue (not taquicardia but palpitations)...  It's not the doctors' faults.  They are doing what they are trained to do.  And, it seems that they were trained to not think scientifically.  

If your heart disease is microbial, how do you cure yourself?  Seems very basic, doesn't it?  If mine is immunologic, digestive and possibly endocrine (caused by childhood trauma), then I guess we have a pretty good idea how to address the process of finding a cure.  But, if the doctors don't want to understand this perspective...?

It doesn't matter if you have two young children or if I have a loving wife... It doesn't matter what is our economic situation/limitations.  This is not a Hollywood movie...  

Ross

Friday, December 4, 2015

FAP and Cardiovascular Risk; Open letter to FAPers on J-Pouch.Org

Does anyone know about the increased risk of cardiovascular disease and FAP? (also related to the question I asked about colectomies/j-pouches, enterolactone and bifidobacterium).  However, this is more specific because of the FAP risk of adrenal carcinoma (benign) that can cause the excessive production of both cortisol and aldosterone, which elevates blood pressure.
Ross
As for the moment I received only one response (now, a few hours later, two) which, in the way it was phrased, I would consider it a bit sarcastic.  Maybe "sarcastic" isn't the correct descriptor; cynical?  The quotation marks around the word "proof" hint towards Chuck's tendency towards doubting the veracity of any possible publishings on the subject before those publishings appear infront of his eyes.
I've never heard of any correlation.........never read anything that showed this either. I'd be curious to see what "proof" there is of this.  
The problem I've encountered with internet forums be it the J-Pouch, FAP/Gardners, Magnesium Deficiency, Adrenal Fatigue, Hypothyroidism, MTHFR etc, those most responsive tend towards falling into two groups:  1) the informed, concerned and in the groups to help orient other members. 2) the sarcastic, cynical and skeptical seeking a battle and the ability to feel better by stepping upon others...  When the first response is the skeptical, a tone tends towards being set for the conversation.  What's worse is that in J-Pouch.org, the FAPers are a signifant minority with the majority of the community being sufferers of Crohns and IBD/Colitis.  
The "proof" I offer Chuck for validating my concern is from organizations that are pilars of cancer research and virtually indisputable.  Understanding an emphasis on "Virtually" is very important when considering their political stances and their polital-economic alegiences that may limit their perspective and the research they support.
If you scroll down to the section of FAP And Adrenal Tumors you'll read this:  
"...This is especially important since recent reports suggest that up to 20% of patients with adrenal incidentaloma (which means 1–3% of all FAP patients) have some form of subtle and subclinical hormonal dysfunction resulting in an increased risk of metabolic disorders and cardiovascular disease."
And then there is this publication by the American Cancer Society:  http://www.cancer.org/acs/grou...ntent/003081-pdf.pdf
Although the general statistics say that FAPers are at a 1-3% risk for adrenocortical carcinoma, this book (click on the link):
claims that two large studies claim that the risk is between 7.4 and 13%...  In my family, my younger sister fell into the "1-3%" who developed thyroid cancer.  And my cousin and then my other cousin's daughter (a generation apart) fell into the "1-2%" who developed medulloblastoma (brain tumor); the 18-year-old daughter of my cousin was just stricken down a few days ago.  So, for us, it is easy to worry about understatements of risks in the statistics. 
And then there is this this from the Endocrine Society: http://press.endocrine.org/doi...10.1210/er.2013-1029 
"the relation of adrenal tumors with FAP led to the discovery of the role of Ī²-catenin signaling in adrenal tumors."
I guess I'll leave you with this.  I imagine they are sufficient amount of scientific studies connecting FAP with the possibility of adrenocortical carcinoma to bring up the question of the risk of the production of excess cortisol or aldesterone leading to hypertension, hence cardiovascular disease.  So, the question to the community of FAPers is if anyone has stumbled across studies focussing almost exclusively upon FAP and cardiovascular disease.  
As you know, I can never "just leave it at that..." and I continued writing, leaving behind my reaction to his "tone" and continuing with my concern about understanding what may happen with us (me), our atypical genetics and other possibly related health issues; especially cardiovascular disease.
Since I haven't been writing much these days, you may not know that my concern about dying of FAP/Gardners related cancer disappeared with the major risk of sudden death caused by cardiovascular disease.  However, in the 9 months since the heart attack on March 12th, I haven't rested from reading all there is to understand about cardiovascular disease, risk, prevention, intervention and exaggerations etc and have stumbled across a lot of very interesting information that may have brought me full circle back to questions related to FAP/Gardners/J-Pouch.  For instance: J-Pouch restructuring of part of the small intestine, Vitamin D deficiency--hypertension, SIBO--TMAO--LDL cholesterol stickiness--Arterial plaquing, Lack of colon and potentially low levels of enterolactone and that relationship to increased risk of cardiovascular disease AND what led to this blog entry: FAP, Adrenocortical cancer and heightened production of cortisol or aldesterone leading to cardiovascular disease.
Truthfully, I can't imagine that those living within the FAP microcosm at such risk also living within a society or world at such publicized high risk of death caused by cardiovascular disease, reading the prior paragraph the FAPer/J-Poucher wouldn't have their interest peaked...  

First you must read what is fascinating about Enterolactone, cancer (especially breast cancer) and cardiovascular disease.  And then you must read the connection between SIBO and TMAO and how TMAO relates not only to our arteries but also to all forms of cancer. You may have read the argument against red meat causing heightened production of TMAO leading to cancer.  However, it goes way beyond red meat consumption and cancer. Plus, the Paleos show studies proving that fish are the animals with the highest levels of TMAO precursors in their muscle. Supposedly (and strangely; although even my cardiologist mentioned this) the small intestine is the immunological center of the body.  So, if you read about TMAO, you'll also read about SIBO as the main cause of TMAO (although normal-high levels of testosterone are protectors against the production of TMAO) and that J-Pouchers and those with only colectomies may have a tendency towards SIBO.  The Paleo doctors/research scientists claim that the issue with TMAO is SIBO and urge that people consume probiotics especially in the form of fermented vegetables.
But back to the letter to J-Pouch FAPers:
As many of the studies mention, since the past two generations of FAPers have had prophylactic surgery, we are just entering a moment in history or analysis where FAPers aren't dying of cancer of the colon and now approaching middle age or passing through that period when we can see the prevalence of other diseases that may appear...  For instance: my father died from cancer of the colon metastecized to the liver at the age of 34 (he was an eye surgeon).  Due to his suddenly becoming ill, his older brother (the father and the grandfather of the two cousins who developed medullablastomas--brain tumors) was diagnosed with FAP and immediately had his colon and rectum removed.  However, it turns out that my paternal grandfather (not of the FAP/APC line) died of a heart attack at the age of 62 and my father's brother also died of a heart attack at the age of 62--but directly related to his Diabetes I.  Now, had my father lived into middle age, would he have been diagnosed with heart disease?  As you know, speaking of my uncle, Diabetes doesn't strike everyone the same.  Not all diabetics develop heart disease.  So, we can't say that his was caused by diabetes.  We can assume that it was not FAP related and possibly his father gave him gene mutations for heightened risk of heart disease...  
I'm not diabetic.  Unlike my younger sister, I didn't develop thyroid cancer.  But, it seems that only female FAPers develop thyroid cancer.  I have osteomas.  No one else in my family has that...  My male cousin (father of the 18-year-old with the medullablastoma) has horrible desmoid tumors that no one else suffers.  My younger sister also developed rectal cancer at the age of 43.  But the rest of us had J-pouch surgery years earlier than did she...  I'm very health conscious and informed, proactive etc.  But, at the age of 46 I had a heart attack, although my lipid profile was near perfect and I was exercising regularly (I was running between 30 and 40 miles [40 and 66kms] per week; at the moment I'm running 4 miles [6.5kms] 4 times per week, while rowing 1-2 days [30 minutes] per week).  
When I was diagnosed with FAP at the age of 12 in 1981 and had the colectomy at Memorial Sloan Kettering Cancer Center in New York the following year, I was told that with the removal of my colon, the polyps in the rectum would disappear and we would be basically "free" the rest of our lives.  When my younger sister developed thyroid cancer in 1996 and I did the research, the only medical research scientists connecting thyroid cancer with FAP was a group from New Zealand.  However, the American Medical Association smashed their study as being too small, calling it inconclusive evidence.  At that time, the medulloblastoma that killed my beautiful cousin at the age of 16 in 1978 was NOT considered an issue of FAP.  However, if you go into the Cleveland Clinic website and any other dedicated to FAP/Gardners today, you'll find that both Thyroid cancer and brain tumors are part of the syndrome.  
What if the parents of a 12-year-old carrier of the APC gene were told that their child would be at a lifetime risk of heart disease?  Then maybe the child could be taught techniques for preventing or decreasing the risk of having a heart attack.  One thing is having cardiovascular disease.  Another thing is having a heart attack.  And, contrary to popular belief, controlling saturated fat intake is NOT near the most important method for preventing heart attacks.  There's a whole slew of other lifestyle factors and dietary considerations for decreasing arterial inflamation and plaquing etc...  Although having a heart attack does not signify the end of one's life, it is the edge of an important precipice that we would be much advised to avoid nearing at all cost...  Prevention is much more advisable than is intervention.  
Are we as FAPers preventing adequately?  Are we adequately informed?  Is there enough research into the field?  And if there was enough research and information out there, are we sufficiently proactive with our personal health and that of our children?
That's why I ask the questions and do the research.  

And then Jan, who always responds scientifically to my postings and is a moderator and a retired nurse, responded:


I guess my thinking is that it is pretty much a moot point. The FAP associated risk with adrenal tumors is quite low, since they are found incidentally in the general population. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3147036/
Plus, only a percentage of those have an associated heart disease. I think you are extrapolating too far. In addition, having normal lipids and blood pressure does not guarantee avoidance of coronary heart disease or other causes of heart attack (such as arterial spasm). Those are simply factors that can be controlled. You cannot control your genetic makeup. Sure, you may have FAP genes, but you may also have heart disease genes. Heart disease is very widespread in the general population. 
You are better off dealing with your state as it presents rather than trying to figure out how you got there. But, I can understand your curiosity and desire to unravel the mystery. Just don't make yourself crazy about it.
Jan 
My response may appear a bit harsh or intense.  But, I'm hoping you'll understand my point.  If this were an academic, religious or political debate, it wouldn't be void of harshness and intensity and in the end, if we are thoughtful and educated people we would understand that what is important is the information being shared and if it is helpful or destructive or possibly neutral.  The problem with Jan's response is that it lends towards inactivety, complacency and the status quo.  We must ask in who's best interest is addressing illness and disease with blinders limiting our vision... like carriage horses that pass through centers of major cities...  I guess if you don't look around you, at the moment there is nothing at your sides that could possibly startle you...  Until you are diagnosed and it's a bit too late... But what if it isn't?
And here's my response to Jan:
Hi Jan, nice to hear from you again.  
In all that I've read about cardiovascular disease, especially what I'm currently reading in the British epidemiologist Dr. David Grimes' book "Vitamin D and Cholesterol; the importance of the sun" that addresses not only cardiovascular disease, but tuberculosis, hepatitis, diabetes and gastric ulcers, it is just as important to deal with the cause as it is with dealing with "the state as it presents itself"...  
For instance, if the issue is SIBO causing high levels of TMAO combined with low levels of Testosterone (Testosterone turns off the FMO3 gene responsible for the production of TMAO), the logical response would be to both remove the SIBO and raise testosterone levels.  And then we could see if the cardiovascular disease decrease or if the arterial plaquing stops.  Sometimes the illness isn't just the current diagnosis, such as cardiovascular disease or diabetes II or kidney disease.  Sometimes it is actually something else that wasn't diagnosed or attended towards.  And, as you said, sometimes it is a bunch of factors.
As you may have read in my other posting, J-Pouch experts have made the correlation between J-Pouches and Vitamin D deficiency.  But they don't understand the mechanism.  Now, Vitamin D deficiency is widely connected to hypertension which is directly connected to cardiovascular disease.  In my genetic testing I have one mutation of the VDR gene, otherwise known as Vitamin D Receptor...  
I have 4 gene mutations related to glutathione deficiency also directly related to cholecystitis (that I had in 2006 and investigated how to avoid having my gallbladder removed by naturally removing the gallstones) and atherosclerosis.  
For a 46-year-old male, my testosterone levels are that of a 75-year-old, meaning that they are very low.  Originally, the medical scientists did not understand what came first--cardiovascular disease or testosterone deficiency.  But what they did notice is the tendency of people who've had heart attacks having low levels of testosterone...  I read about that in May.  In November, I stumbled across a bunch of studies connecting testosterone with TMAO and cardiovascular disease. So, normal-high levels of testosterone are cardiovascular protective.  
Also, in my blood testing over the past 2 years there is one nagging constant: Immunoglobin M deficiency (IgM).  It never rises.  So, I did a search for IgM deficiency and cardiovascular disease and was surprised/amazed to find that IgM is not only responsible for protecting us against Antigens but more importantly IgM is responsible for removing from the blood stream oxidized LDL cholesterol and apoptosized cells...  So, maybe my LDL cholesterol level is normal.  But, over the years, if my IgM isn't working adequately, then I am accumulating oxidized LDL cholesterol and what is considered the true "lipid" cause of cardiovascular disease.
Now, when you address cardiovascular disease as it presents itself, especially if you had a heart attack, you are addressing it with a Cardiologist.  And when you mention SIBO to a cardiologist... If they know what it is and believe what you say, they say that's the realm of the gastroenterologists... If you mention Vitamin D deficiency, they mention a nutritionist.  If you mention low levels of Testosterone, they mention an endocrinologist.  If you mention IgM deficiency they mention an immunologist... Now, if you mention FAP/gardners do they mention a gastroenterologist or a geneticist?  
What I'm saying is that addressing cardiovascular disease as it presents itself is done with a cardiologist.  Ignoring the possible causes would be blatantly irresponsible.  
As Dr. Robert La Porte, professor of epidemiology at the University of Pittsburgh says, "We need to examine and model the evolution of patterns of disease. We need to break away from our orientation towards single disease and begin to focus on the big picture."
If FAP places 7-13 percent of the FAP population at risk of adrenocortical carcinoma (which is actually very high) and even if a small percentage of those 7-13% experience heightened levels of cortisol or aldosterone, AND if those people also have genes for cardiovascular disease (although most people don't check their genes, so they don't know if their heart attack was genetical determined), it's still sufficient reason to address the concern.  
How do you address that concern?  With abdominal ultrasound to see if there are growths on the adrenal glands.  If so, you must check aldesterone and cortisol levels.  But, if no one is asking these questions, and making these statements, no one will decide, "Maybe I should have an ultrasound done of my kidneys!"  Plus, as I've read today with these articals: most people discover adrenocarcinoma when they are having an ultrasound for something else, since the adrenocarcinoma normally is symptom free.  If the person suffers hypertension without knowing it's cause, the cardiologist will prescribe anti-hypertensives without addressing the true problem.  Maybe it is as simple a solution as laproscopic surgery for removing the benign tumor from the adrenal gland instead of having to take anti-hypertensives (that cause possibly unnecessary side effects and also have the tendency to stop functioning adequately later on) "For the rest of your life" as the cardiologists love to say.  
It's much better to treat the disease instead of the symptoms.  But, first you must understand the disease as it pertains to you.  As for FAP/Gardners; it's a multifaceted syndrome also known to be an enigma in many ways.  As you may have read in my earlier response, it "presents" in different forms with all members of the family...  Why?  Who knows?  Maybe it never would have killed me through my colon. And maybe it will kill me through my heart.  Maybe all of what I wrote above about the different possible factors are genetically independent; maybe they are interconnected.  If you read about the APC gene, you will also read that the APC gene mutation is related to other gene mutations...  
When did medical scientists suddenly start believing that the information at hand was all the information we need to know for addressing the related situations?  When did they suddenly decide that there was no need for more questions and alternative perspectives and also continued challenging of the veracity of popular theories?
Who are we protecting when we decide that we don't have to continue asking questions and looking for more or better solutions?  Certainly not the patient.
The J-Pouch forum is for J-Pouchers to obtain additional information related to their experiences with their body AND their experiences with their doctors.  Many questions are not answered because as you know, there are many fewer explanations for what causes and how to "cure" a disease than there are questions.  
FAP is hereditary.  But, today 30% of FAPers are first timers.  Sounds like an anomaly/paradox to me...  That means for those FAPers, it wasn't hereditary.  Maybe it was epigenetic...  
Maybe my questions and statements and the scientific information I offer periodically will aid one of the FAPers who reads this...  So, I guess it really isn't moot.  Is it?
For instance; 2+ years ago I wrote about running and bleeding during or afterwards.  It turns out that many J-Pouchers responded that they had to stop running due to excessive bleeding during or after.  I discovered in Runners World Magazine something called intestinal ischemia that occurs with maybe 13% of marathoners...  For the half marathon J-Pouchers, this may have helped them understand that maybe it had nothing to do with their J-Pouch per se...  However, my bleeding stopped after greatly changing my diet.  Not only that, I stopped having what so many J-Pouchers suffer: Pouchitis.  Why?  Could it be that many people with a J-Pouch or before having the surgery have problems with all forms of wheat and not just wheat gluten?  Could it be a combination of wheat and other traits of the modern commercial food industry/diet?  Could it be as simple as increasing lignans in our diet, especially from flax seeds?
Does anyone really want to remove their ailments naturally? 
At the moment it means a greater sacrifice than they already are doing, AND it means that it isn't as simple as taking a pill or drinking metamucil...  But, mabye in the long run they would be sacrificing much less...
Thanks for your response.  Hopefully there will appear other types of strong opinions that help us expand our knowledge of the situations.
As for FAP associated risks; they are low for ALL other FAP related cancers after colon cancer.  My younger sister developed Thyroid Cancer at the age of 26 (1-2% risk) and rectal cancer at the age of 43 (was considered low risk).  My cousin died of a Medulloblastoma at the age of 16 (1-2% risk) and who would have been her niece was just rushed to the hospital for having a sudden medulloblastoma removed (she's 18-years-old).  In 1996, the American Medical Association smashed the study that came out of New Zealand connecting FAP with Thyroid Cancer.  Brain Cancer wasn't connected with FAP until the turn of the 21st century, even though my cousin died of it in 1978...  FAPers aren't the general population.  And as I've noticed during my lifetime living with this "disease", it's like living with a stalker hiding out there, visiting you every once in awhile and saying "if you don't give me $100,000 tomorrow, your daughter may not return from middle school or your wife may not return from work or the gym or from shopping sometime in the future..." Read about non-War Veteran PTSD and hypervigilance...  Come to think of it, you could tell me to see a psychotherapist claiming that also my cardiovascular disease is psychological trauma related.  My father died at the age of 34; I was 4.5-years-old.  His sudden death "destroyed" our family.  I had my colectomy and emergency return to Sloan Kettering at the age of 13...  The heart attack appeared at the best time of my life, when I was "healthiest" and in an economic position for planning for a future with my wife in ways I never had dreamed of.  And now, with the heart attack, those plans were shattered.  
But, what gives me most comfort is finding all of this information that helps me understand the possibility that maybe not everything is inevitable... and if we understand the multifaceted causes of the individual's disease (since, when it comes down to it, there is only one disease and one person being treated. Although the statistics of humans as groups help us direct our attention for being able to incorporate possibilities and for removing them from the list with educated analysis or "guesses"), we can see if we can remove/alter variables one by one... instead of saying "this is what the doctors said and it's this and THAT'S IT... if it doesn't work, than I guess am F---ed.  Dump all of your savings into THIS and CROSS YOUR FINGERS!"
But what if the doctors are looking through a bottle...?  What if they haven't been well informed?  What if their perspective and training only looks at 2 of the 240 possible causes of cardiovascular disease?  What if there are many other options of possible cures but the investigations require heavy funding and most of the medical research is funded by pharmaceutical/medical technology companies not interested in non-chemical/non-surgical responses to illness/disease?  What if the gastroenterologists were taught in medical colleges not funded by the farmaceutical industry and understood that gallstones can be removed with changes in diet without removing the gallbladder?  What if they understood that Hiatal Hernia, cholecistitis (gallstones) and diverticulitis were directly related and that cholecistitis and atherosclerosis were also directly related (low glutathione)?
In 2006, had I had $2000 for removing my gallbladder, I would have followed my gastroenterologist's recommendation.  However, considering that I didn't have that money, I decided to research alternatives.  9 years later I don't have cholecistitis.  But I do have my gallbladder.
How are the gastroenterologists attending to pouchitis?  Considering that I have never met a gastroenterologist that understands J-Pouches and FAP here in Mexico, I had to attend to my pouchitis alone...  If I don't ask questions and read scientific literature along with a lot of alternative medicine and compare, I wouldn't have found the solution to what much modern medicine turns a blind eye...   
Ross