Pico de Orizaba

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

Wednesday, March 12, 2014

The Constantly Evolving Medical Histories; the Urgency for One Being Their Best Doctor

Hi Jess, I must say I am very impressed with how much you've accomplished under the circumstances; your incredible persevailance (forgive my spelling, I'm living in Mexico for 11 years now and seem to have lost much of my English spelling skills).  I stumbled across your blog a few days ago looking for a possible link between Alcohol and Apple Cider, believing for years that I had a strange allergy to both, although the reactions are occasional and widely spaced over the past 27 years, reactions that seem like the combination of a full body cramp, migraine and imminent heart attack.  I don't remember if I had breathing problems, nor do I remember if my BP dropped drastically, although I do remember that I must lay down...  I believe I've had this reaction in Mexico, or I wouldn't continue considering it.  My most memorable attack was at an anniversary party at the Spanish Institute in NYC after having drunk a lot of Piña Colada...  The moment after the attack passed, so did the sense that I had ingested alcohol.  The first time I had the attack was after drinking really good apple cider in New Jersey.  Over the years I imagined that the apple cider attacks were because the apple cider may have fermented a little, although it didn't taste that way.  

I really appreciate how you write.  I wish I could write so clearly.  

Let me tell you a little about me.  I grew up in New Jersey, studied in an alternative college in Amherst, Mass, spent my last 7 "American" years in New York City and now live in Mexico for 11 years.  My father was an Opthalmologist for 1 year before becoming ill with Liver Cancer that spread rapidly from his colon and died less than a year after "becoming" ill.  I was 4.5-years-old. It turns out that he was diagnosed with Familial Adenomatous Polyposis that my younger sister and I inherited.  At the age of 13 I was supposedly the youngest person to have their colon removed at Memorial Sloan Kettering Cancer Center in Manhattan (the same place where my father died).  Supposedly removing the colon removes the problem.  Of my paternal grandmother who died when my father was a boy (2 sons and 6 grandchildren), both her sons inherited FAP (my uncle was also type 1 diabetic), her oldest grandaughter (my cousin) died of a brain tumor at the age of 16 (I must have been 9-years-old), her oldest grandson (my cousin) also developed FAP/Gardners Syndrome along with a hormone problem (it has a very familiar name in endocrinology that slips my mind at the moment) that caused him to become very tall as a boy, my younger sister (who also developed thyroid cancer at the age of 26) and I were diagnosed with FAP/Gardners, only my older sister was born without the gene (7/8 or 88% inheritance rate, unlike the supposed 50/50% claimed by the experts, who also claimed 18-years-ago that Thyroid Carcinoma didn't fall under Gardners or FAP; they say that they are one in the same, I believe Gardners is an umbrella syndrome with FAP falling below it.  But, I'm not a scientist or doctor...)

What does all of this have to do with you or Celiac or Hystamines?

As a child I was diagnosed asthmatic.  However, somehow somewhere my mother was told I outgrew it after the age of 5.  I was very active as a child and loved the outdoors and sports.  However, I got winded very easily.  So, I didn't play basketball...  My nose was always clogged.  I supposedly was allergic to cats (grew up with them; my favorite was named "Dusty").  Long-grassy fields were paradises, but caused horrible bouts of sneezing and itchy eyes...  I've had horrible reactions to long-neck clams...

In Mexico I've had some horrible reactions to pine tree pollen that led to my tongue swelling, to bamboo dust and three allergic reactions to Salt Peter from water damage to the roof of the house where my wife and I live over the past year...  

Over the years I've had slight asthmatic attacks where I had difficulty breathing, and talking would cause coughing that did not produce phlemn (I would have relaxed some if I could have expectorated something) but doctors have dismissed them as seasonal allergies.

I'm jumping all over the place.  15 months before leaving for Mexico in 2003, I had my rectum removed and replaced with a J-Pouch.  So, I wouldn't know if what I eat causes diarhea, since not having a colon nor a true rectum creates a permanent state of diarhea...  

I've never had a sweet tooth (one cavity in my lifetime).  However, one of my passions over the past 25 years is international cuisine.  Not long after meeting my wife 11 years ago, I found myself with a great dilemma: how to make a life with her without money nor the right to work as an "American" in Mexico, as she wouldn't be able to enter the U.S. legally.  The magical response to the dilemma was baked goods; gourmet pizza, banana bread, coffee cakes, carrot cake, apple cake...  The wonderful thing about the food industry (especially the baking industry) is that if you have no money for more than your ingredients, you'll always have some form of bread and, of course, eggs.  The pizza business didn't work because we couldn't sell gourmet pizza at such low prices.  The cake/breads business didn't really work for the same reason, although we became famous for such high quality.  I eventually changed the breads/cakes to gourmet cupcakes filled (and topped) with 7 cream cheese mixtures and 5 jams... And then I became ill working 365 days per year 18 hour days...  Diet, stress, exhaustion, fear, struggling for making a life with Margarita against all odds...

In 2006 I was diagnosed with gastritis, high blood pressure, high cholesterol, two ulcers in my stomach, hiatal hernia, H-Pylori, gallstones (and what I didn't notice from the Upper Endoscopy--Duodonitis).  The GastroEnterologist suggested removal of the gallbladder.  But we didn't have money for that...  The internist gave me a diet for starving me to death and leeching any savings we may have had, since I could basically only eat salmon and chicken breast...  I got very ill again 8 months later and on the 23-year-anniversary of my father's death (he died on New Years Eve/Day 1974) I created my first New Years resolution in my life (I grew up without celebrating New Years); to stop seeing doctors and to stop taking medications.  I decided to investigate healthier forms of eating or natural ways of healing...  I succeeded in lowering my BP and my Cholesterol levels for at least 6 years and ridding the gastritis.

When Margarita and I began the baking business and married in June/July 2003, I weighed 72kgs/162pounds.  Four years later I had gained at least 28kgs/63 pounds.  In 2007 we left the baking industry for travelling around the country with our coffee bar (My father-in-law is a coffee farmer in the mountains of Veracruz); a client from Washington state had asked me why we didn't have an established bakery/café and why we don't sell/export my father-in-law's coffee. And after explaining the situation over a two week period, the client lent us a hefty amount of money for helping us improve the situation...  And I was freed from being immersed in baked goods.  Clients repeatedly ask why we don't compliment the coffee with baked goods and I respond that I can't sell mediocre baked products to a client and must bake it myself, which is the truth.  However, a greater truth is that I can't live/work with baked goods below my nose...  

Over the seven years with the travellin coffee bar, our economy has increased greatly.  And with the incredible rise in violence in Mexico, we removed half of our business travelling for protecting ourselves (especially my nerves), which has given us a lot of free time on our hands (8 months per year).  We established home in Guadalajara with a great park for walking/running and an incredible canyon for very steep hiking an hour to the bottom and a little more to the top...  

I don't eat street food, since I've gotten horribly ill from that opportunity...  I don't eat in restaurants, since I generally don't believe we have that economic luxury.  But, moreso because outside of New York City, it is way to risky that I will feel that I can cook the same dish so much better and for so much less.  As I said, my greatest passion is international cuisine.  In my kitchen, for so little cost, I cook Chinese, Thai, Vietnamese, Indian, Arabic, Caucasus/central-west Asian, Italian, North Africa and Pan-Latin American cuisine...  I don't shop in supermarkets such as Walmart if I don't have to, buying in (Centrales de Abastos) giant farmers market/depots (I've never known what they are called in English, although I know there was one north of NYC, although I would never have had the nerve to go, and because I didn't have a car) where the fruit and vegetables are fresher, higher quality and less expensive.  

Where am I going with this?  Hiking in the canyon for 2 months 2 hours per day, 5 days per week... or running 4 days per week, between 32 and 40 minutes (4-5kms/ 2.5-3.1miles) or run-walking or semi-speed walking for 50-120 minutes 6 days per week for 2 years now and I have dropped maximally 10kgs/22.5 pounds for a moment, basically maintaining a weight of between 92-95 kgs/207-214 pounds.  I don't eat junk food and very little baked goods/sweets/pastries...  I don't drink sodas or commercial juices or flavored drinks... I don't buy prepared foods, nor fast foods...  Until just before beginning the baking business with Margarta, I could drop all the weight I may have gained in a month by creating a 3 mile running routine.  It always worked.  And I believed in carb loading for running better.  In Brooklyn, I lived across the street from Prospect Park and would prepare what I called a super coffee (triple cappuccino/Puerto Rican style café con leche) and drink the big glass just before running...  When I exercised, I believed I could eat as much as I wished and anything I wished.

None of this works for me here in Mexico.

The long story gets longer and, of course I feel a bit ashamed putting this upon you and whoever else may find themselves reading this.  But, the problem is that there is absolutely no one here who has the time or the knowledge or the interest or the education level or...  Don't misunderstand me, I know you don't have the time, and I know that most of this is just one of those fantasies of "one-in-a-million" chance (like my having met Margarita or that client appearing "out-of-the-blue" in The Lakes of Xalapa, Veracruz with a big check or my awakening New Years morning in Catemaco, Veracruz 2007 with the magical idea of "healing myself"... I had never been interested in my health, nor in nutrition, nor in healthful living, nor...  And, of course, "talking to oneself" isn't all such a bad thing to do...  Writing that talking-to-myself helps organize thoughts and helps plan for the future and helps organize various realities.  

In October 2012, I was running 3.1 miles in 26 minutes 5 days per week (walk-running would come later).  My diet was wonderful (kale, cauliflower, bok choy, spinach, red cabbage, fresh ginger, fresh garlic, fresh turmeric, papaya, apples, guavas, chicken, fish, natural yogurt, lamb, beef liver, beef and all the rest of the typical vegetables etc).  In November I found myself becoming gradually fatigued until I couldn't reach 22 minutes before I developed horrible burning in my calves... And then I couldn't reach 7 minutes without that burning reaching my knees etc... It felt as if I were running with lead in my shoes...  At all other times I was feeling a pain near my stomach and felt that something was slipping out from below my right rib cage and imagined that my gallbladder was inflamed again...  So, I thought something could be seriously wrong.  I read that stomach ulcers don't cause pain and I wasn't experiencing gastritis with it's distention.

So, I decided to visit a GastroEnterologist for the first time in 6 years.  I told him my symptoms and shared with him my FAP/Gardners medical/family history and was surprised that he had met my ultimate surgeon.  I didn't remember the surgeon's name, but said that he supposedly was #1 in the world in J-Pouch surgeries and the doctor asked me if he was Dr. Gorstein and said that he had met my surgeon in a conference in Chicago.  The gastroEnterologist mentioned that he had been the director of the GastroEnterologist Society of Mexico and that he was very familiar with FAP...  However, with all that I told him, he said that he didn't believe it was necessary to give me an UpperEndoscopy, nor an abdominal ultrasound.  He focussed upon my high BP and suggested I visit a Cardiologist and that maybe the pain was hypertension in the Kidney that could lead to a heart attack or a stroke and prescribed my Vitamin B12 injections...  The one good thing that came out of the visit was his statement that since the Ileal part of the small intestine was converted into a J-Pouch, it no longer served for absorbing the Vitamin Bs, making all J-Pouchers vitamin B deficient and fatigued... I would learn months later that he was incorrect.  I left his office concerned and perplexed but now thinking about malabsorption problems and the lack of the Ileum, Colon and Rectum...  I made an appointment with a cardiologist and with a laboratory/clinic for an ultrasound and blood tests...  However, between the GastroEnterologist visit and the Laboratory, I investigated connections between vitamin/mineral deficiencies and high BP and/or muscle fatigue etc., and came across Vitamin D, potassium, connections between various vitamins and the B Vitamins etc...  The ultrasound revealed that I had rid myself of the gallstones and that my liver, gallbladder, kidneys, pancreas and spleen were normal along with their corresponding channels...  My B12 was over the roof (from just one injection), my potassium normal and my D was at 19...  If my potassium levels were high-normal and my sodium, glucose and cholesterol were low-normal, then why was my BP high? 

(My first 33 years were spent at sea level; my last 11 have been anywhere between the altitudes of 3,937 feet and 9,186 feet; Guadalajara is around 4,600 feet above sea level).  

So, I assumed that the issue with bone pain, skeletal muscle fatigue/pain and high BP was due to the vitamin D deficiency.  Since one cannot find adequate suppliments here in Mexico (there are pharmacies on every corner by the way) and what you find is 20 times more expensive than in the U.S. (GNC Mexico sells Vitamin D4 400uis 100 capsules for USD $10 while GNC U.S. sells Vitamin D3 5000ius 150 capsules for USD $5 if I am correct).  A friend of mine sent me 150 capsules of D3 10,000ius for I believe $12USD.  The equivalent bought here would have cost me 20 times more or $240USD... 

It's a year later...  

In my life in the U.S. I have never gotten the flu or strepthroat and the only time I had a fever was from a dirty I.V. needle after my J-Pouch surgery at Mount Sinai in NYC November 2001.  They also discharged me with that fever...  I guess the Medical Insurance Companies have more power/leaverage than does Federal Law...  

Over the past year I have developed colds/flu 3 times and very drawn out; none of the typical 3-4 day discomfort-inconvenience-nuisance and over the past 18 months 3 periods of extended allergic reactions due to mold spores or Salt Peter from water damage...  

Today I ran 20 minutes of the 41.5 minute 5km/3.1 mile run-walk...  8 months of the past 12 walking or run-walking 6 days/week and fatigue and no weight loss.

What makes things new and why I stumbled across you is that for the first time in my 12 year J-Pouch life, I sleep the night through without running to the bathroom at least two times per night for almost 2 months now... removing the Cortisol issue from the table and bringing up the question "if I sleep 7-hours per night and don't go to sleep late, nor awaken late in the morning, Why am I fatigued all day long?"  It isn't an issue of the adrenal glands... Plus, I found myself joking around about Alzheimers because I suddenly found myself with memory problems and a very foggy mind since December.  I'm an incredible driver*look at my comment below; I pride upon that.  I don't like driving at night, since I feel my night vision has decreased greatly, especially rainy nights or when the roads are damp... My vision has decreased greatly over the past year... Although supposedly I don't have vision problems... 

I decided to look up Hypothyroidism a year after putting the idea on the shelf since I had spent much of my life with sleep disturbances (insomnia until the age of 30 and J-pouch from 32-44) and replacing it with the idea of Cortisol Dumping in the Blood Stream that causes midsection weight-gain, fatigue, high blood pressure, repeated eating during the day...  What struck me now is the connection between Hypothyroidism, carpal tunnel/rheumatism/peripheral neuropathy symptoms,  memory problems, and constipation...  I've had a problem with my right shoulder to my finger tips for years now.  I've always blamed that as work-related damage (repetative-use) when we were in the baking business; carrying 50 pound boxes of bananas or apples or other things on my right shoulder and going from hot and cold--baking in the oven for hours to placing the finished cupcakes in large freezers...  But, the problem became worse this past January, without having used the right arm as much as usual...  

So, I visited with an Endocrinologist who only focussed upon my BP and my weight and said that if my BP doesn't drop with his diet and my exercise over the next month, he would prescribe medication.  My BP today was between 126/92 at 2pm, 138/88 after drinking a cup of coffee at 5pm and 144/105 at 8pm after writing all of this.  Margarita asked me why my face is flushed and I said it must be due to writing so much...  He sent me for blood tests, urine tests and a thyroid ultrasound, but for 3 days before the following appointment in one month, since it is clear that he believes the issue is BP and being overweight.  I am 5'6 and very stocky/muscular, big-boned; compare my wrist size or head size or foot size to other men my height... When I was around the puberty age, I was told by the school nurses that I weighed 5 pounds over the ideal weight for my height/age.

I was 14 or 15-years-old here
Minimally 10-years-old

Do you see a weight problem here?

I imagine I was 11-years-old 


 But I was a very skinny child.  I didn't start gaining weight until I started driving at the age of 17 and stopped travelling all over the world on my bike or by foot...  My mother struggled for years after my father's death.  We often didn't have adequate food in the pantry or she wasn't around since she went to community college, college and grad school right after my father's death...  She often sent me to school with rancid chicken roll sandwhiches on moldy bread.  I have a very sensative sense of taste and smell THANK GOD.  But touch or smell, I know when food is turning... when many others don't know it... Thanks Mom!  I couldn't eat that.  And often had to pass the school day without eating anything...  In 7th grade, the kids called me "poor boy"... In 8th grade I had my colon removed and had to return to the hospital to have scar tissue removed from strangling my small intestine (2 months in the hospital; the second time fed with an I.V. for 9 days --not even water passing my lips--, watching the fluids leave my stomach through the drainage tube after each hunger cramp, their color changes... yellow... green...) 

I've always joked that I could be dying from anorexia and they would accuse me of being over-weight...

So, I ignored the endocrinologist's diet and immediately made an appointment with the Clinic/lab for the following morning.  I was told that not even water could pass my lips for 8 hours before the tests.  J-Pouchers are constantly on the edge of dehydration or we live in a constant state of dehydration...  

I imagine that the lack of water for at least 10 hours before the tests negatively affect the results, which means I should retake them...

In any case, my HDL Cholesterol was surpisingly low and my LDL was almost high...  My glucose was surprisingly high for me at 117.  If I'm correct, my Triglycerides were the same as a year earlier 330+/-

I didn't see anything strange with my T3, T4 and the rest... The doctor who did the ultrasound said that all of my glands and my neck was normal, although there were comments written on the plates, that mean who knows what...

Aside from the cholesterol and glucose levels, what truly concerns me and why the endocrinologist was dead wrong for not wanting to see the results in the following days is this:

Basophilia and Platelet Anisocytosis...  High levels of Basophyl white blood cells and varying Platelet sizes...  So, I've been searching the internet for connections and possibly why I stumbled across you before mentioning gluten or Celiac or...

Basophilia-- problems with hystimine in the blood?  Swollen Spleen or Hyposplenism or Leukemia (since with FAP/Gardners anything is possible regarding cancer); which is why the doctor should have seen the results.  Basophilia could be connected with Diabetes, Thyroid disease, hyposplenism, rheumatism and cancers other than Leukemia...  Varying platelet sizes?  I haven't found that... But, what I find interesting is the connection between Celiac and Hyposplenism... And what I find interesting is the connection between hyposplenism and illness, since I had never gotten this type of ill before 2012...  Over the past year I've even worried about Lymphoma, since I occasionally found balls of pain around my armpit during times of flu-like symptoms...

In reading Chris Kressers blog, returning to read about hypothyroidism and celiac, I became intrigued with impressive weightloss by the removal of carbohydrates from the diet.  I was amazed that I had never stumbled across the idea that carbohydrates could be counter-productive for the creation of energy and weightloss...  

It's been a week since I've removed wheat, rice, corn and sugarcane products from my diet.  And visit your blog and that of Chris Kresser daily amidst my continued research on what the hell could be the issue or the risk or the possibilities, good and bad...  

If you reached this point, I applaud you and thank you for your consideration.  If not, I'm not surprised.  Afterall, most of personal human existence is spent alone, thinking and possibly talking to oneself.  And maybe there isn't a true answer or solution.  Afterall, why would one be born with an early self-destruct button within? if we weren't supposed to die this way, if we were supposed to understand something other than we must die young?  I have yet to "meet" a FAPer/Gardners Syndrome survivor of preventative surgeries, nor a study of us, who live beyond the age of 60... My lifeline says, 95-years... 

At this point in my medical experience, it may be more helpful to consult with a true Astrologer than with a certified medical specialist.  Would you believe that there is something in my astrological chart that says, "due to this combination, one or both of your parents will die during your childhood..."  But nothing and no one says that I carry this "disease" or that I will die young...

Ross

2 comments:

Marsha said...

Phew......it amazes me that you are able to write as you do! Wish I had that ability but maybe what I would say wouldn't hold somebody's attention!

Ross said...

And it's still a rough draft... never have time or energy for improving the writing, and I messed up a little, forgetting a few details that I begin mentioning... such as being a good driver, but finding myself a bit concerned one day during the day where I could have put myself in a dangerous situation due to mental focussing problems. As you know, I am very attentive at the wheel. But there was one day that I didn't notice a car that had the right of away about to cross the intersection that I was approaching without braking... I also didn't notice a few red lights those days... But, those days in early-mid February, I felt as if my brain/attention was foggy and I almost was afraid to drive...