Who I have seen and What Have They Told Me

Warning in advance!

This entry serves no purpose besides my revealing in intimate detail a comprehensive listing of specialists who have seen me live and in person. This is only “for the record’ and serves no greater purpose.

You have been dually warned. Read on if you must.

 

First off, in the past five years I’ve seen the following specialists:

  • Two different gastroenterologists
  • An ENT
  • An allergist
  • A neurologist
  • A nutritionist
  • An endocrinologist
  • A cardiologist
  • A urologist
  • A geneticist
  • An oncologist
  • A counselor
  • A psychiatrist
  • And an NAET practitioner

I must admit, that’s a fair sum of doctoring doctors. Perhaps you’ll admit the same.

Now, here’s the same list with added commentary based on what these specialists found or suspected:

Two different gastroenterologists  ~  low vitamin D indicated, upper and lower GI’s normal 2011-12

An ENT  ~  swallowing difficulties caused by being bedridden 2013

An allergist  ~  nothing conclusive 2013

A neurologist  ~  no brain tumors – low lying Cerebellar tonsil indicated – does not seem to be causing pressure/issues 2013

A nutritionist  ~  high homocysteine 2014

An endocrinologist  ~  blood work indicates irritated pancreas 2014

A cardiologist  ~  no issues 2014

An oncologist  ~  no cancer 2014

A counselor  ~  no mental illness 2014

A psychiatrist  ~  no diagnosis of any kind 2014-15

A urologist  ~  bladder emptying fine 2015

A geneticist  ~  blood work indicates no genetic illness 2015

And an NAET practitioner  ~  2015

Also, other results and tests administered:

Blood work 2010 – 2013  ~  no parasites, thyroid issues, STD’s, bacterial infections, blood infections, allergies, testosterone deficiencies, Lyme disease or anemia found

Swallow Test  ~  radioactive food – no blockages or delays indicated 2013

Upper/Lower GI performed  ~  no indications 2012

EMG Nerve Test  ~  no indications 2013

B12  ~  [381] with high homocysteine level 2014

Local MRI determined pancreas and liver not enlarged 2014 + 2015

Chest X-ray 2015

Amino Acid Test indicated 11 of 35 markers show as elevated 2015

Tests I’d like to see performed:

As relates to Parosmia – “If a metabolic disorder is suspected, the patient should be referred for specialized metabolic testing of choline and other liver metabolisms”  (Leopold et al., 1990).

NOTE: I do have extensive blood work results, but those won’t be included here.

Yeah, a boring post… but this information needed to be put out there as a form of groundwork covered and published as a means to eliminate the possibilities that have already been eliminated by professionals doing their best.

Ideally, I’ll create a “fun” posting at some point in time. Life can’t all be doom and gloom.

H

Diet, Allergies and Supplements… Oh My!

As food allergies and sensitivities can be a possible cause or contributing cause to chronic illness, I shall provide details regarding my diet history, as well as the foods and supplements that I am currently ingesting. The following may be of little use to you or your people, but I need to set the record straight.

Brief History … Back in the 70’s

“You may not leave the table until you’ve finished drinking that glass of milk.”

The seven-year-old me says, “I don’t want to drink it. It’s yucky!”

“Here, have a few cookies.”

My mother places several cookies in front of me. They’re Nilla Wafers. They’re supposed to be part of the bribe, but I don’t much care for these cookies. I think my dad likes them, but I’m not sure.

“Milk and cookies go together. You can’t have one without the other.”

It’s my mother again.

“I still don’t want to drink it.”

“Why not? It’s good for your bones and teeth.”

Even then, I knew my mother was probably right. But for some reason, milk didn’t work for me. Heck, I ate my breakfast cereal dry. Has anyone else ever done that?

Of course, and more often than not, I wound up with a bloated belly and related digestive symptoms shortly after consuming dairy products. But for some reason, my childhood mind couldn’t complete the cause and effect portion of the equation. Even so, my subliminal adolescent mind held some sway in keeping me away from cow’s milk under many trying circumstances, especially involving ice cream cake.

The 80’s

Then, by the time I was fourteen I had the sudden urge to try pizza. It smelled so good. And everyone else was doing it. But more than that, I hated being singled out when it came to selecting restaurants and ordering from menus. Pizza is a social thing.

So I tried pizza and liked it… every other night of the week. My mother would pick up seven hamburgers with “onions only” from McDonald’s on her way home from work and then I’d eat an entire Tombstone pizza before bedtime.

I also began consuming milk shakes and entire cheese cakes in one sitting. It was almost as if I could eat anything I wanted to without consequences. Of course, I was in the midst of a growth spurt lasting the entirety of 8th grade. I grew nearly ten inches in less than one calendar year. So at an ever increasing 5’ 11 inches tall, I only weighed in at 125lbs.

Anyway, it seems as though the dairy curse had been lifted.

The Turn of the Nineties

Seven years pass. I’m about to celebrate my 21st birthday. But things aren’t going well for my intestines. Being a part-time college student, part-time deliverer of Chinese food and part-time musician keeps me busy. My primary diet staples are pizza and beer. I wisely suspect my diet is a contributor to my digestive difficulties, which includes being doubled-over in pain.

I stop drinking beer, and my condition does not improve.

I start drinking beer and stop eating pizza, and my condition does not improve.

I stop eating both pizza and beer and my digestive distress ceases to be an issue…

Back to the Present

I’ve been dairy-free since 1991, and gluten-free since 2001. I was never proven to be allergic to either, but my intestines have been thanking me ever since I quit each. Three years ago I took the official/unofficial (I’m not sure which) Scratch Allergy Test at a local facility. Based on the results, they explained to me that I have no sensitivities or allergies worth mentioning.

So where does this leave us?

Well, I’m sensitive to honey. It makes me feel kind of “off.”

And for some strange reason, I’m highly sensitive to Sodium Bicarbonate. In large amounts it causes unwell feeling/paranoia and occasional panic attacks).

Drinking Nestle bottled water and eating certain gluten-free foods has been the primary cause for this type of reaction (but only if I drink a 24-pack over the course of a week’s time or eat the offending gluten-free product for successive days on end).

Bizarre, right?

I have a few theories. So it’s possible that valuable insight may be coming your way soon!

Daily Diet/Food

Cantaloupe –                1 serving = 40 calories

Apple –                       1/2 of an apple daily = 25 calories

Prunes –                       3 or 4 prunes per day = 25 calories

ALT Larabar –             1 per day – protein (10grams) = 240 calories

Larabar –                     3 per day – protein (7grams ea.) = 220 calories each x3 = 660 calories

Turkey sausage –         4oz –

w/Shrimp –                   4oz –

w/Okra –                      3oz = 400 calories total for stew

Hamburger –                 2 or 3oz = 100 calories (every other day)

Baked potato chips –   1oz = 120 calories

Between 1600 to 2000 calories total per day

I try to eat the exact same thing at the exact same times each and every day of the week… to help make any potential diagnosis less complicated much due to fewer variables.

I also drink between 50 and 70 ounces of Arrowhead bottled water daily.

Supplements

Metagenics GI Sustain – 90 grams (1.5 servings) per day – total 45 grams of protein plus multi-vitamins – 330 calories per day*

VSL #3 Probiotics – 2 capsules per day

Seroquel 25mg (lowest dosage) – prescribed for parosmia, also helps with sleep duration (not sure on quality) – Note: cut down to 12.5mg on 6/18/15

B12 (Methyl-Cobalamin) – 500mcg per day

Vitamin D – 1000IU per day

                    

*prescribed by former nutritionist

 

Considering

Magnesium, Zinc and Calcium

 

Failed

D-Ribose – provided some energy but caused gastrointestinal distress lasting 7 days

L-Alanine – 300mg caused twitching and spasms above right ear near temple

L-Tyrosine – tried small dose but quit after receiving Amino Acid Analysis results

L-Methylfolate – 100mcg (focusing on B12 right now instead … )

Metagenics UltraClear Renew – 15grams – makes for odd sensations

There are myriad reasons why I am taking what I am taking, and eating what I am eating. In fact, I plan on addressing each of these as this blog progresses.

Please keep in mind that I am very ill. DO NOT follow my diet from home!

Parosmia (Smell Hallucinations)

Rather than run a measured and ever so predictable step-by-step blog that details my demise one symptom at a time, I’ve decided instead that this thing is going to move forward out of sequence. At one point in time I had this rather cumbersome outline in my head, but I like coloring outside the lines (…and by the way, there’s a fascinating book by the same name “Coloring Outside the Lines” that sheds wonderful insight into how children learn and explains how parents can raise their children to think smarter).

So last night, after a long day at the office, my wife comes home. Neither of these events is particularly unusual.

She takes off her clothes…

No wait…

She changes her clothes (into something more comfortable) and saddles up beside me.

She leans into me and gives me a kiss.

Besides a hint of peanut butter, her breath smells unremarkable.

Later, as she dozes beside me, my intestines start growling and gurgling. I briefly sit up and lean forward. Then moments later, I settle back in.

Now I have intestinal pain. My intestines hadn’t hurt this badly since late 2013. Clearly, I’d been on a good run.

My wife awakens thirty minutes later, having successfully completed her nap. She leans into me and offers another kiss. This time her breath reeks of sour chemicals.

As my intestinal cramping and pain increases, the strength of my wife’s “chemical breath” increases exponentially. The smell is most reminiscent of hair coloring product mixed with nail polish remover and perhaps a hint of vinegar. And now I can smell this smell several feet away, even while facing away from each other.

Definitions

They call it Parosmia. At least, that’s what I call it. That is what I have.

According to Wikipedia, parosmia is an olfactory dysfunction that is characterized by the inability of the brain to properly identify an odor’s “natural” smell.

Doctor’s do not believe I have parosmia …and/or have never heard of it, and/or do not believe me when I explain the exact triggering mechanism. And these doctors include two reasonably intelligent primary physicians and two gastroenterologists. Admittedly, the neurologists at Mayo were at least familiar with the term and likeliest symptoms.

Fortunately, according to the CAT scan I do not seem to have a brain tumor, nor do I seem to be having intermittent brain seizures. And the ENT suggests no apparent issues with my olfactory sensory apparatus. Please note that these seem to be the primary causes for parosmia.

So where does that leave me?

Better yet, the question at large should be… why does my being intestinally ill trigger my brain to incorrectly interpret translate the smell sensation emanating from people’s mouths?

Well, there’s this (what I think is a massive clue):

How it all Works (copied from – http://www.altmedangel.com/braingutconnection.htm )

  • The gut’s brain, known as the enteric nervous system (ENS), is located in sheaths of tissue lining the esophagus, stomach, small intestine and colon. Considered a single entity, it is packed with neurons, neurotransmitters and proteins that zap messages between neurons or support cells like those found in the brain. It contains a complex circuitry that enables it to act independently, learn, remember and, as the saying goes, produce gut feelings.
  • In his book The Second Brain, HarperCollins 1998, Dr. Michael Gershon, a professor of anatomy and cell biology at Columbia-Presbyterian Medical Center in New York City, dubs the entire gastrointestinal system the body’s second nervous system. “The brain is not the only place in the body that’s full of neurotransmitters,” says Dr. Gershon. “A hundred million neurotransmitters line the length of the gut, approximately the same number that is found in the brain…” If we add the nerve cells of the esophagus, stomach and large intestine, there are more nerve cells in the gut than there are in the entire remainder of the peripheral nervous system. Nearly every chemical that controls the brain in the head has been identified in the gut, including hormones and neurotransmitters.

Relationships

What this tells me is that my intestines (the neurotransmitters in my intestines) are communicating directly with my brain, right? Every time I am digestively ill, my sense of smell is altered.

So what are the nerve endings in my intestines trying to tell me?

At first, back in the first instances of the parosmia portion of my illness (*January 2011), my wife’s breath smelled like Campbell’s Vegetable Soup. So I wondered if the smell hallucinations could be associated with a vitamin deficiency. Maybe the hallucination was trying to tell me something. I mean, why not? I’d been neglecting vegetables in my diet as the fiber seemed to make my digestive symptoms worse.

So my gastroenterologist drew blood. No wait, the phlebotomist did it. Anyway, despite living in and amongst the Arizona sun it turns out my vitamin D was low, and I was prescribed 50,000 IU’s f the best vitamin D money could buy… or rather, that insurance would pay for. Otherwise, all of my vitamins checked out (although my vitamin B12 was only [381] …more on that later).

And that was the end of that. Except, it wasn’t…

The digestive illness continued on and on, and so did the parosmia.

Stress Reaction

As my internal organs were all diagnosed as properly functioning, my GI doctor suggested I was ill due to stress. Stress wasn’t the cause, it was the effect of me being ill every single day of the week.

Even so, I took the suggestion to seek out a counselor. And I saw her several times. And she suggested there was nothing wrong with me (mentally, at least). So, despite nothing being wrong with me, she suggested I speak to a psychiatrist. My counselor figured I might be having smell hallucinations, similar to when a person with schizophrenia hallucinates by way of hearing voices that aren’t there.

The psychiatrist decided I was in line for two prescription drugs. One was Seroquel and the other was Lexipro. I asked the doctor why I needed two different drugs, especially considering there was nothing wrong with me. And, just as my counselor suggested, he explained I had too many thoughts in my head. Well, perhaps I do, or maybe I did, but I kind of liked it that way.

As I was still taking Nortriptyline (GI prescribed for intestinal pain), I thought it unwise to start the new meds straight off (despite the psychiatrists protestations). So after properly weaning off of the Nortriptyline, I started in on the 50mgs of Seroquel.

All at once the parosmia went away. I also felt the need to sleep 14-hours a day.

I took a few Lexipro. I didn’t like the way I felt and didn’t think I needed it. Heck, I didn’t really NEED the Seroquel, but it did stop the parosmia instantly.

Back to the Future

So now it’s late June of 2015 and I’m getting desperate. I’ve only had a few fleeting instances of parosmia in the past calendar year. But I’ve started to wean off of the Seroquel (not knowing the cause of my bodily weakness and fatigue, I thought I might as well get off of this medication). So I went from 25mgs at bedtime, to 12.5mgs. And within three days, my wife’s breath began intermittently taking on that odd chemical smell.

And in the past two weeks, I’ve begun having frequent intestinal disturbances again (not severe, mind you), and subsequently, the frequency of parosmia has increased.

Could this decrease in Seroquel be a factor in my renewed intestinal illness? Or, is a diet/supplement/vitamin change may be responsible for that which ails my intestinal tract?

In early July I began taking 500mcgs of sublingual B12 (methyl-cobalamin). A week later, I added Metagenics UltraClear Renew (approximately 10g every other day). And last week I began taking 1000 IU of vitamin D.

Besides these, I take a pro-biotic called VSL #3, twice a day and 90grams of Metagenics GI Sustain (for easily digestible protein and vitamins).

For now, and as I’m still rather ill this morning, I’ll remove the UltraClear Renew from the equation. Nothing else in my diet has changed, besides having added ground beef (approximately 3ozs every other day) to my diet mid-July.

Alright then… this was more than I intended to write. I tried to cover the basics regarding my parosmia. I have many more observations to offer, including information related to zinc absorption/loss, thoughts on research performed by Dr. Donald Leopold, and reverse engineering (Fish Malodor Syndrome).

Please let me know if you have any questions or observations.

H

*reading through older documentation I was able to determine that my first “smell hallucination” instance may have been late August of 2010… after a bout of severe diarrhea.

Why am I Blogging?

I have… Extreme Muscle Weakness and Fatigue

I’d much rather be initiating a blog that highlights my creative nature, but much due to my increasingly poor health, I must instead utilize my analytical problem-solving skills in attempts to prolong my life.

Well, perhaps it’s not as bad as all of that. After all, I am creating a blog. And I am, in this instance, seeking attention… which may be for my benefit and mine alone. That is, unless others join the fray. And sometimes, when dealing with the frayed, much depends on where my withered ends meet insanity head-on.

In any case, if I can’t help myself, I’d sure as heck like to be able to help someone else.

I have a plethora of knowledge in regards to what my illness is not. But in the interest of my reader(s), it’s likely best that I describe what symptoms I am experiencing on a regular basis, so that we may get further acquainted.

I AM SAD.

(Oh, how I wish that were the extent of my undoing)

And as some of you may already know, sadness can grow on a person. Perhaps like moss amidst the damp humid climes of Nova Scotia.

So, from where does this sadness originate?

Well, and again, I am extremely f**kin’ ill!

And I can’t do anything or go anywhere or even take care of myself anymore!

And it especially hurts me not to be able to see my son!

Actually, I do see him once per week for a few hours at a time. He’s taller than me now. He’s bigger. He’s faster. And he hates to see his father in such a state.

Okay then, enough of that.

I have a wife, too. She works. She sets out supplies and snacks for me in the morning, and then comes home at night to see if I’m still alive.

Usually I am.

But occasionally I’ve had to summon the good folks at 9-1-1. Lately, I don’t even bother with that route or routine. The doctors tell me there’s nothing they can do for me. Which, I suppose, is better than… there’s nothing left for them to do for me…

So here’s what’s bothering me (besides the fact that I cannot get any type of medical personnel, doctor wannabe’s or suitable metabolic nutritionists interested enough to help me):

Primary Complaint

Weakness/fatigue has been getting incrementally worse day by day past three years  – does not improve with sleep, food or food type – bedridden 24/7 since Feb. 2015 – any increase in heart rate has debilitating exhaustion-related effects

No appetite/never hungry

Tinnitus (non-pulsing high-pitched screeching) – waxes and wanes throughout the day, usually worse afternoon/evening – lately more prominent/severe at times in right ear

Sweating – feel over-heated with occasional profuse sweating that occurs only after 9pm, typically lasting until 11pm – drinking water makes heat sensation worse, increases severity and sweating – do not have fever – do not sweat while sleeping

Parosmia (smell hallucinations 2010 – 2013 and now 2015) – for three years, and only after severe bouts of daily diarrhea, wife’s breath smelled like Campbell’s vegetable soup and bar soap smelled like dead fish – took an antipsychotic to mask the “hallucination” – since I’ve cut back (6/18/15) parosmia is returning, even though I no longer have the daily diarrhea/perceivable intestinal illness – now, wife’s breath smells like bitter chemicals 40% of the time – per blood work my zinc level seems to check out okay –

Secondary

Constipation (occasional) – (RESOLVED 9/2015) probably caused by diet – rice-based protein “medical” food/not enough fiber

Urology (RESOLVED 7/2015) – ever since constipation issue (2/21/2015) I now have frequent urination (up to 6x per night) twice weekly – not a bladder emptying issue – cut back fluids from 70oz water to 50oz water per day out of necessity and no fluids after 6pm (so I’m not awake all night)

Those are the basics. Those are the symptoms I am experiencing right now. But that’s not how it all began.

NEXT Entry:

The illness began during the summer of 2010, in the form of once-weekly intestinal illness (bloating, diarrhea, intestinal pain)… and was diagnosed as IBS.