The Destruction of a Medically Disabled Man in Colorado

FINAL UPDATE (11/2024):

Subsequent visits to Johns Hopkins and the Minnesota Mayo Clinic confirmed my suspicion.  My final diagnosis is Restrictive Cardiomyopathy -- more specifically, Non-tropical Eosinophilic Endomyocardial Fibrosis.  80% die within five years.  The world record is understood to be eleven (11) years.  As I type this update, I am nearing the end of year eleven, but I'm not doing well.  The end of this year (2024) will mark the beginning of year 12 for me.  They tell me I'll then hold the record.

Yippee.

UPDATE:

In November 2017 I flew to Boston to be undergo specialized testing.  Based on that testing I was diagnosed with an untreatable form of heart failure (HFpEF) and pulmonary hypertension.

The prognosis is grim.

I have none of the usual risk factors so it's a medical mystery why this hit me.  The doctors agree: the most likely scenario is that this is part of the aftermath of the December 2013 adverse drug reaction.

I've been reaching out to the nation's top heart failure specialists but the news isn't good.


Not an easy message to read.  Not an easy message to deliver.

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Before you read the story, please know where things stand today (November 2016).

I moved into my brand-new, first-ever house in February 2009.  

I was disabled but I was fit, strong, healthy, and active.  At various times I could ride my bicycle, hike, ride my motorcycle, ski, and snowshoe.  I was learning to be a hobbyist woodworker.  In 45-60 minute 'bursts,' I learned that -- given enough time -- I could actually make pieces of furniture in my wood shop.  

I was in chronic pain, had chemically burned eyes, was visually impaired, and had a Primary Immune Deficiency, but ... I was doing okay within my limitations and was doing everything I could to expand my life within those limitations.

Now ... 7-1/2 years later ... I have been diagnosed with Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis or Systemic Exertion Intolerance Disease).

I'm now having all kinds of health problems, including heart problems (atrial fibrillation, atrial flutter, orthostatic hypotension, postural orthostatic tachycardia syndrome) and infections that I can't safely fight off.  Life had been reduced to watching/listening to TV and walking the dog.  The doctors are now telling me that I have to stop walking the dog.

I truly did lose everything -- my home, my life's savings, and my health -- because I asked to be able to sleep in my own home.

A wonderful local investigative journalist has released a series of about two dozen videos telling my story.  Those videos can be found HERE.

A direct link to much of the original correspondence -- in everybody's own words -- can be found here. 

I've also created context-specific hyperlinks throughout the post below.  If you click on them, they will take you directly to the relevant document(s).

Please also take a few minutes and look at the page, "Lies They Told The Police."  It's critical.

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This is the full version of the story.  It might take 10 or 15 minutes to read.  

Though a significant amount of important detail is omitted, for those who need a quick summary, please start here.

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In my sleep, I still see all the guns pointed at me, the flash of light from the sniper’s scope, and the tank.

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My wife and I moved to Fort Collins, Colorado, in October 2008.  

Having visited the town on several occasions, we fell in love with the lifestyle that defines Fort Collins: rather small-town hospitality and pace, with most of the city amenities, weather that works for our favorite activities, a host of outdoor options, and relatively affordable housing.

We bought a property from a local builder, and put together the specifications for our semi-custom dream house.  

It would take about six months to complete.  The floor plan was already set.  We had no choice about that.  We were, however, able to pick interior finishes, appliances, and other 'minor options.'

We rented a house, during construction.

I have been medically disabled since 2004.

I was born with a complicated laundry list of eye problems, and a Primary Immune Dysfunction.  For over six years, one of the eye problems was treated with eye drops that -- I later found out -- burned my corneas, leaving me in severe, chronic pain.

I had to leave a career as a Director and Vice President of several different corporations.

I now have to wear fluid-filled, custom-made contact lenses while I am awake, and was treated for the chronic pain that the eye issues cause.  It is only because of the gift of these lenses that I could tolerate the dry, windy, wintry climate of Northern Colorado.  But the lenses are maintenance-intensive, ridiculously expensive, and ... I cannot ... MUST not ... sleep in them.

My underlying eye issues are particularly severe when doing “close work,” like reading and using computers.  My focusing muscles are like having two bad knees, with focusing being a lot like standing up and squatting down.  While standing up and squatting down should be fairly easy, in my case, my knees (focusing muscles) tend to either give out or lock up.  Imagine being locked with your knees bent at 90 degrees … for hours and hours and hours.  When I use my eyes for reading or computer work, that’s what happens – I get a ‘charley horse’ in my eyes.

Medically, I need to be outside as much as possible, bicycling, hiking, snowshoeing, walking, running, or nearly any other activity that lets me focus on things off in the distance – straightening out my legs, so to speak.

The exercise is also necessary to help me strengthen my ability to fight off infections.

As our new house was being built, my wife and I noticed that the structure extended nearly all the way back to the property line, behind the house -- much farther than the neighboring house to the North of ours.  

As a result, the entire master bedroom was “in the backyard” of the neighbors’ house, and a mere couple of feet away.

No reason to be alarmed, I thought.  While the houses were very close together, my wife and I picked this neighborhood because of the clear sense of community and friendly people who lived there.

The way our house was situated could have been an issue, but we felt quite comfortable that -- if noise ever became an issue -- we’d be dealing, reasonably, with reasonable people, and could resolve any issues that might arise, between neighbors.

We moved into our new house in February 2009.  Almost immediately, I realized that the neighbors had two young dogs who barked.

And barked a lot.

And barked exceptionally loudly.  

The young sister dogs were a ‘cattle dog mix,’ a breed known for its intense, high-pitched bark.

The dogs barked early in the morning, late at night, and -- on most days -- for hours on end, while their owners were away.

And the dogs' owners were away a great deal of the time – all day long, and for days on end.

Because I often cannot fall asleep for hours because of the pain in my eyes -- particularly once I remove the special contact lenses – I was being awakened, over and over and over.  

Upon awakening, it feels like there's ground glass in my eyes.  Like there's molten ground glass in my eyes.  It's terrible.  The pain is excruciating.  I was losing hours of sleep each day, and … because of the all-day barking … I couldn’t even take a much-needed catnap.

This began a spiral of fatigue and increasing pain that led me back to the doctors at the pain clinic, for relief.  Increased medications led to increased fatigue.  Increased sleep deprivation led to increased pain.  It was a vicious cycle.  I was trapped in it.  It was just a horrible nightmare.

I told my wife that the dog owners were probably used to living next to an empty lot.  I was sure that they would adjust to having people live next door.  I chose to give them a bit of time to see if the problem resolved on its own, before bringing it up.

But the problem didn’t resolve.  The hour after hour, day after day barking just continued.

The barking echoed throughout my house, no matter how many doors and windows were closed, or what kind of earplugs or background noise I used to minimize the noise.  The houses were mere feet apart.  The barking dogs were as close as about arm's length from the entire side of my house.

Without the barking of the neighbors’ dogs, the neighborhood -- well, at least our house -- was just about dead silent, nearly all the time.  It was unbelievable to me just how intense these barks were, coming against a background of such profound quiet.  It was like a bomb going off.  Not only was it horrendously loud, but it was what they call an “impulse” noise – very sudden – as opposed to sounds like traffic that are pretty constant.

After a couple of months of this, I finally wrote a kindly-worded note to the neighbors, explaining my medical circumstances, and the toll it was taking on my health.  I invited the dog owners to come to our house, to meet, chat, and talk about the barking issue.

For a week or so, things seemed to get better.  I sent the neighbors a fruit basket to express my thanks.

But the respite didn’t last.  The barking problem returned, and quickly.  

I, again, sent a kindly-worded note.  Again, I offered to meet and chat, over a glass of wine or a dinner.

By this time, the fatigue was catching up with me.  I was having great difficulty pursuing the outdoor activities that were so critical to the health of my eyes, and ... I began to get sick.  

This time, though, the neighbors' response wasn't particularly cordial.  They said that “other dogs bark, too,” despite the fact that no other dogs were barking mere feet from my bedroom, waking me up, or preventing me from sleeping in any room of my house.

Finally, after about seven months of this, fighting to remain physically active, and now on antibiotics for an illness that wouldn’t let up, the dogs barked for over an hour, at about 11:00 at night, while I was trying desperately to sleep.

One of the dog-owners -- a professional bicycle racer -- was in Italy, for a race, at the time.  

I sent her an e-mail, letting her know that her dogs, again, were barking continuously, and preventing me from sleeping.  

She sent an e-mail back, telling me -- at 11pm, and already sick -- to “walk next door and talk to her husband about it.”

But nobody was home at the neighbors’ house, and the dogs’ barking wasn't stopping.  

At this point, I told the neighbors that the barking was not only a problem for me, but that it might point to a problem with the dogs themselves.  Maybe they were frightened, anxious, lonely, bored, or even scared.

The dog-owners dug their heels in.  They insisted that there was nothing wrong with their dogs, and -- in effect -- nothing more that they would do.  

The dog-owners let me know, that it was time for me to leave them alone.

I reached out to Animal Control, citing the pre-sunrise barking, the near-midnight barking, and the hours-on-end, day-after-day barking.  On several occasions, I held the phone in the air, allowing Animal Control to listen to as much of the non-stop barking as they wanted.

Despite having a conversation with the dog-owners, Animal Control would go no further.  They claimed to require statements from complainants at two separate addresses.  As I later found out, this wasn't actually Animal Control's policy.

I explained that nobody else’s house was situated the way mine was, and that the dog-owners' other neighbor worked and traveled a great deal.  She also had a SECOND floor bedroom, well out of the "line of fire."  I’m sure the barking was nowhere near the intrusion for the other neighbor that it was in our house.

I wrote to Animal Control, explaining the circumstances, and pleading with them TO act, in this case.

They wouldn't act.  

The barking continued.

I asked the Fort Collins Police Department to intervene.  

They wouldn’t.  

The only animal noise complaints that they pursued were based on referrals from Animal Control, who had already refused to act OR refer the matter.  Apparently, this is a pretty common catch-22 in many cities.

I was stuck.  

My health was deteriorating.  I was chronically exhausted.  My vision was getting worse.  It was all but impossible for me to engage in the critically important outdoor pursuits.

As my long-time primary care ophthalmologist had always said, "Four things will ALWAYS make your vision worse: fatigue, illness, stress, and intoxication."  At this point, I had all four strikes against me.  I was a medical wreck.

I reached out to the property manager of the neighborhood’s Homeowners’ Association -- letting them know that this had been going on for eight months, and that all civil, friendly, and reasonable efforts to resolve it, between neighbors, had failed.  

I let them know the toll it was taking on my health, and pleaded with her to help.

She promised to help.

But things didn't get better.  

Reaching out to the property manager, again, I was told that “the Homeowners’ Association does not want [us] to pursue any further action.”  They recommended that I “contact a Board member.”

I was among the last to move into this rather small neighborhood -- one where the close-knit feeling among the residents had a strong appeal.  But I quickly realized that this close-knit community was a double-edged sword.  

Dealing with worsening medical issues, since shortly after moving in, meant that I hadn't been able to “join” the community, as I had hoped to, and that the Homeowner’s Association comprised this tight-knit group of friends.

I asked the property manager for the contact information for the Board members.  She gave me only one name: that of the Vice President of the HOA's Board of Directors.

Meanwhile, the situation appeared on the radar screen of the City’s Mediation Coordinator.  

The Mediation person mailed a letter to me, asking if I would be interested in mediation.  I responded that I would be glad for the opportunity, and -- on several occasions -- asked her to call me to talk things over.

The Mediator never called me back, despite me leaving several voice mail messages and sending numerous emails trying to speak with her.

I sent the HOA's Vice President a note, explaining the magnitude of the barking problem, the impact it was having on me, and the neighborly way in which I had asked the neighbors for help in resolving the issue.

The HOA Vice President wrote back, saying that the HOA wasn't going to take any steps to resolve the issue, “since there are so many folks with dogs,” and “they all know that our own dogs are prone to bark at times, and do not wish to be hypocrites.”

Nobody would ever just speak to me about the problem, no matter how often I asked to meet.

Nobody stopped by to see the unfortunate proximity of my home and bedroom to where the dogs spent most of their waking hours, or to understand that there was no escape, within my home, from the intrusion of the barking, and that the barking wasn't just a brief and occasional issue, but would go on hour after hour, day after day.

After a while, I wrote back to the HOA Vice President, pleading with him to reconsider, to understand the circumstances involved, that the problem wasn't occasional and annoying, but inescapable, chronic, and taking a devastating toll on my health.  

I offered to meet with the Board, anywhere, and at any time, to go over the particulars and make my case.

The HOA Vice President didn’t respond.

I reached out to him one last time, asking for the contact information for the entire Board of Directors.

The HOA Vice President then responded with a shocking list of reasons why he didn’t like me, personally, and explaining how close his friendship was with the dog-owning neighbors.  It was just a scathing and vicious personal attack.

While the HOA Vice President had only met me, personally, once, and briefly, he went on and on, for several paragraphs, about all of the things that he thought were wrong with me, none of which were true, and none of which had anything to do with the actual problem.

Rather than explore the truth of the barking situation, the HOA Vice President and his neighbors began looking into me, personally, looking for ways to demonize me, rather than address the barking issue, itself.

And, still, not a soul would meet with me or talk to me.

The HOA Vice President closed by telling me to leave him and everybody else in the neighborhood alone, and made it clear that -- while I had done everything in my power to keep this issue confined to only the people in a position to do anything about it -- it had become a neighborhood-wide issue, and that “the majority of the neighborhood” had turned on me.

I scheduled a Mediation date with the neighbors, despite never having had a chance to talk with the Mediator, directly.  

When the Mediation date came, my wife and I were there.  Nobody else was.

Apparently, the Mediator had canceled the Mediation, but never told me.

Seeing no further “friendly” options, and being too sick to consider moving, I consulted an attorney, and asked her to try to convince the neighbors to curb the dogs’ barking.

The neighbors refused, eventually threatening to sue me for “harassment.”  By this point, my health was a mess.  I was virtually unable to get outside, and had been battling exhaustion for the better part of a year.  Now, the dog owners were threatening to sue me.  I was being treated with multiple antibiotics, antivirals, antifungals, steroids, and monthly IV infusions of Immune Globulin.

Nothing was working.  The medical bills were piling up.  My health was just crumbling.

In the spring of 2010, more than a year into life with chronic barking, I was now battling insomnia, struggling for any sleep that I could get.  

Unable to sleep in the custom contact lenses that I had to wear, I had to leave them out for days at a time, to allow me to nap when I could.  

This led to a string of sight-threatening corneal problems that forced me to make a nearly impossible drive to Boston, to be treated, for six weeks, at a specialty eye center, there -- a period that I describe as "a lot like torture."  Eight hours a day, five days a week, of enduring excruciating eye pain, in an effort to fit me with new lenses.

I asked my attorney what I should do.  

She suggested that my wife and I file lawsuits against the neighbors for Private Nuisance, and against the HOA Vice President and the Homeowners’ Association for Failure to Enforce Covenants, Breach of Duty of Care, Breach of Duty of Good Faith, and Breach of Contract.

As part of the lawsuit, I learned that the dog-owning neighbors, the HOA Vice President, and our  neighborhood friends had banded together to stop me , spread false and vicious rumors about me, and do everything in their power to side with their friends, the dog-owners. 

They were totally unconcerned about the truth, the barking, or the harm it had caused me.  They simply sided with their old friends, and against this new guy.

Rather than ever talk TO me, the neighbors spent an inordinate amount of time talking ABOUT me.

They had decided that -- since they had “seen [me] ride a bicycle, before,”that I must not be disabled.

As part of the lawsuit, I learned that the dog-owners and their friends had reached out to every member of the community, telling them a one-sided version of what had happened, (but neglecting to mention that I'm disabled and that the noise was hurting me) and saying that I was “trying to force them to get rid of their dogs,” rather than simply train them not to bark so much.

As part of the lawsuit, I learned that several neighbors often heard the neighbors' dogs bark.  

These neighbors lived quite far away from the dogs, relative to my house.  If these neighbors heard the barking from 150 feet away, why couldn't they imagine just how loud it must have been in my house, only a few feet away from the dogs ?

In another document, the situation had been presented as me “insisting that the animals are either removed or put down [killed].”

Nothing could have been further from the truth.

From the beginning, my wife and I loved the dogs.  In fact, I continued to venture outside in an effort to calm and quiet the dogs, even giving them treats from time to time – something the neighbors’ attorney deemed “suspicious” and ordered me to stop.

No.  I never had a problem with the dogs.  The problem was with the owners.

As part of the lawsuit, I learned that the dog-owners had been in lengthy back-and-forth correspondence with the City Mediator (who never returned my phone calls).  The Mediator was counseling the dog-owners on how THEY should handle the situation with THEIR ‘annoying neighbor.’  

To the Mediator, the dog owners, and the neighborhood, I was the annoying, dog-hating neighbor.

Again: the Mediator never got my side of the story, and never spoke with me.

As I later discovered, the Mediator already had a relationship with the dog-owners.

The Mediator soon left the City of Fort Collins.  Her department said that there was no file on my case.  Apparently, the Mediator had destroyed it before departing.

The lawsuit was stressful, painful, and extremely expensive for my wife and me.

Eventually, the Judge dismissed the lawsuit against the Homeowners’ Association, ruling that -- no matter how the HOA acted, what they did, what they did not do, or what laws may have been broken -- since it was up to the Homeowners’ Association whether or not they would enforce the dog barking Covenant -- the case was totally without merit.

The Judge never even considered the other legal Causes of Action.  I never got my day in court.

The Motion for Summary Judgment, then, was decided in favor of the HOA.  

The strategy of the HOA’s attorney was to "prove" that I wasn't disabled at all -- simply factually untrue.  They were given piles of medical records – requested from me – that more than substantiated everything I had said.

The Judge throwing out my case meant that -- in the eyes of the Judge -- there were no issues of law or fact that should be decided by a Judge or a jury.  In law, this is an extremely high bar.  There was no way a Motion for Summary Judgment should ever have been granted in our case.

Even the Judge-Mediator, with whom we met, in Denver (at a Court-ordered Mediation), said that there was no way this could happen.  She said that the case was chock full of issues of fact and law. 

I was denied my day in court.

The Judge then awarded the HOA $73,000 in legal fees, in addition to the nearly $100,000 in fees that I had already spent.

This $73,000 was payable to State Farm Insurance, the policyholder of the HOA's Officers and Directors' insurance.

This took my life’s savings, left me broke, and ... absolutely stunned.  

I was reeling.

My wife and I settled with the dog-owners.  

We had spent everything we had, and my health was still going downhill.  

At this point, my only activities were trips to Denver, to be evaluated by Immunologists, Infectious Disease specialists, and Ear, Nose, and Throat specialists, and to get my monthly IV’s.

Eventually, the ENT recommended a sinus surgery to clear up the persistent sinus infection that hadn’t responded to aggressive multi-drug therapy.

While recovering from the surgery, and running a fever, one of the neighbors used his ATV to plow the sidewalks and driveways of the houses on either side of mine.  He plowed all of the snow onto my sidewalk, forcing me – in order to comply with Fort Collins law – to bundle up, perspiring, feverish, shivering, and – literally – with blood dripping out of my nose --and dig myself out of the mountains of snow the ATV-owning neighbor had left me.

I, again, called the Fort Collins Police Department, and begged them to intervene.  I told them that the pattern of behavior of the neighbors – against a medically-disabled man – was escalating.  I told the Police Officer that I was “medically disabled, in chronic pain, have an immune dysfunction, and have been battling serious health issues.”

She – literally – laughed out loud at me, and said that this was “the most ridiculous thing she had ever heard.”

I never recovered my health.  Neither could I make it to my next scheduled trip to the eye specialists in Boston.  

Those Boston trips cost me about $12,000, out of pocket, each time I have to go.  We just didn't have it, anymore.

Since the time that the Motion for Summary Judgment was decided, in favor of the HOA, I had to file multiple police reports against the HOA Vice President, who had begun to harass me on numerous occasions, while the next-door neighbor OF the HOA Vice President tried to run me off of the road, with his truck, and revved the engine of his motorcycle every single time he passed my house.  This same man “played chicken” with me on numerous occasions, as I left the neighborhood for doctors' appointments.

I was physically unable to move out of the neighborhood, to get my health back, or to pursue the outdoor activities that were so critical to both my eyes and the stability of my health.  

For months, I did nothing but be seen by medical specialists, all of whom were stumped about how to restore my health.

The dog-owners finally moved from the neighborhood in the spring of 2011, but not before one of their two puppies -- only about three years old -- died.  

It was the dog who barked much more than the other, and made me worry that the dogs were truly NOT okay. 

The dog died of an autoimmune disease. 

I don’t think the dogs ever were okay.  I think she was either sick, and barking because she was sick, or the stress of being left alone so much made her sick.  Either way, the dog died.  It was the worst kind of lose-lose situation, and simply didn't have to happen, in the first place.  

They lost a dog, and I lost everything.  And for what ?

My wife and I look back, in disbelief, at the whole saga.  

We moved to this neighborhood, in Fort Collins, for a better quality of life, and for the sense of community that this neighborhood promised.  We tried to do everything right, abide by the law, and be decent in asking the appropriate people and agencies for help, in a civil and reasonable way.  We still can’t believe this `happened to us.

Having spent nearly all of the winter of 2011-2012 living as a recluse -- leaving my house only for medical visits, I knew that, as spring came, II would have to tend to the landscaping of my property.  There was no way the HOA was going to cut me ANY slack.

But I could find no landscapers to return my call during the busiest part of their season.

Having avoided further threats, assaults, and abuse by the neighbors, by staying inside, it seemed I'd be able to stay inside no longer. 

It was clear that the authorities would do absolutely nothing to protect me from further harm.

For self-defense, I purchased a handgun, was trained in its use, and openly carried it on my property, while maintaining the yard -- perfectly legal in Fort Collins.

I’m not a gun guy. I've never owned a gun in my life.  But the escalating pattern of abuse and torment … against a disabled guy who simply tried to sleep in his home made it impossible for me to know just how far these individuals were willing to go.  And it became clear that the authorities weren't going to help me.  

I was never going to hurt anybody.  I simply had to protect myself from them … again … still.

I only stepped outside my house for the briefest of periods, and after ensuring nobody else was around near my end of the neighborhood.  And … when I did step outside … I openly and legally carried my gun.

In early June, having seen me carrying a handgun ON my property, the HOA Vice President -- hiding behind both the bushes and the side of his house, in his own yard, 155 feet away, and using an eight-power telephoto lens, (despite having told the Police that he was in his garage with his back to me) took a handful of pictures of me carrying the gun.  

He snapped a handful of pictures during the roughly five minutes I had dared to exit my house.  In all but one picture, I was looking down at the yard that I was maintaining.  In one picture, I looked straight ahead for a brief moment.  

A man with a gun was now looking up ... for a brief moment (seconds).

The pictures look a bit incriminating ... because ... the sequence seems to mysteriously stop with the photo where I was looking straight ahead for a brief moment.

The problem is ... the District Attorney told my criminal lawyer that the Fort Collins Police Department had "advised [the neighbor who took the pictures] that he could destroy some of the photographs."

Let me say that again.  The District Attorney told MY lawyer ... that the police told this neighbor (hiding in his bushes, totally invisible to me, and taking pictures with an eight-power telephoto lens) that he could destroy evidence.

The remaining pictures would surely have proved that I was unaware of the presence of anybody else, was simply tending to my lawn and watering my tree, and that I went back inside as quickly as I could.  

Fort Collins Police and SWAT team arrested me.  

There were probably 20 law enforcement officers, in full riot gear, all pointing guns at me.  There was an armored SWAT vehicle in the street, two doors down, and a sniper pointing a rifle at me from across the street.

This is the image that haunts my dreams, awakening me nearly every single night.

They jailed me and charged me with Felony Menacing. 

I was given a “Deferred Prosecution” that required – among other things – an evaluation by a forensic psychologist.  The psychologist concluded that I …

“responded appropriately to the emotional stress and turmoil created by the ongoing dispute by seeking out mental health counseling and his process of problem resolution was progressive and appropriate to the circumstances.  There was no indication that Mr. Brooks responded impulsively or irrationally during the dispute and, while frustrated by the circumstances and outcome of his case, he never verbalized retaliatory or vengeful thoughts against the opposing parties.”

The Court also imposed a Gag Order on me, preventing me from speaking publicly about the case. That Gag Order finally expired, and was dismissed, in September 2014.

Fort Collins has had more than its share of negative publicity, largely due to government malfeasance.  Apparently, this time, they could control the publicity and be sure nobody knew what they had done … at my expense.

They also imposed a Restraining Order ... on ME ... prohibiting me from having ANY contact with several of the neighbors.  Legally ... effectively ... I couldn't go back to my house ... even if I wanted to.

I moved away from Fort Collins, and into a long-term hotel in the Denver area.  We were forced to sell our house.

My wife and then separated.  

I am still pursuing solutions to the issues with my health.  All of my possessions are in Colorado storage spaces, my unprotected, chemically-burned eyes make it impossible for me to live in the State, unless I’m utterly stuck inside – the worst place in the world for me to be.

Since all of this happened, I have been seen by numerous corneal specialists, all of whom agree that I should not wear my life-saving lenses.  I can spend the weeks and the thousands of dollars to TRY to be fit again, but there’s no longer any guarantee that wearing the lenses won’t cause further harm to my eyes.

After talking with Department of Housing and Urban Development (HUD) attorneys, it became clear that my civil rights, as a disabled person, had been violated by the neighborhood, the Homeowners’ Association, and their property management company, when the Homeowners' Association denied me the "reasonable accommodation" needed to maintain my quality of life.

All I ever asked was that the dogs' barking be curbed.  That’s it.  Nothing more.

It's also likely that the City, the County, and the various governmental agencies' refusal to act constituted a violation of the Americans with Disabilities Act.

Unfortunately, my attorney -- from the onset -- told me that there were no federal discrimination issues, in the case.  She was wrong.  If she had made a simple phone call, to see that my case WAS Federal, the case would have been heard outside of Fort Collins, and would have -- almost certainly -- yielded a different result.

Still unable to safely wear the life-saving custom lenses, I left the country, for Central America, in March 2013, on the theory that the extreme humidity of the region might help me stave off additional sight-threatening complications.  It did not work.

In August 2013, I returned to the States, to live with family members, and -- once again -- pursue a path back to the Boston clinic that could TRY, again, to make new lenses for me.  The trip is extremely expensive and extremely painful.  I tried to save money, and began working with a Pain Clinic, a Palliative Care Clinic, and a team of doctors, to get the pain under control, and -- hopefully -- allow me to make the Boston journey anew.

Unfortunately, on Christmas Day, I got sick.  Seriously sick.

After months of doctor visits and procedures, followed by a three-week long trip to the Mayo Clinic, I got a diagnosis of DRESS Syndrome – a life-threatening reaction to a prescription medication – in this case, most likely the anticonvulsant that was prescribed to try to manage my corneal nerve pain.

The Mayo Clinic recommended that I avoid any medication not deemed “absolutely essential,” leaving me with no custom lenses, and no options for treating the recurrent infections OR the chronic corneal nerve pain.

So ... now, I can't be inside (everything at near triggers that charley horse in the focusing muscles of my eyes), and I can't be outside (light, wind, cold, dust, heating, air conditioning ... all sear my eyes.  It's like having seriously chapped lips, or a sunburn -- in your eyes -- and not being able to put anything on them).

I can't treat the chronic neuropathic pain in my eyes, the recurrent infections (that I can no longer stave off), or ... the new addition ... the Complex Post-Traumatic Stress Disorder that I acquired as a result OF this experience.

The local newspaper -- the Fort Collins Coloradoan -- won't cover my story.  They were only too happy to put my SWAT arrest on their front page, including a picture of me in the orange jail outfit.  They seem totally uninterested in publishing what REALLY happened.  

Color me surprised....

The cult of residents in that neighborhood, and the City of Fort Collins, Colorado … have truly taken everything away from me, a disabled man … who had never hurt a soul … and who wanted nothing more than to be able to sleep in his new house.

----

Pictures to show you how close together the two houses were/are:

The yellow wall, toward the rear of the photo, is my bedroom.  This picture was from the listing, when the neighbors finally sold their house:

The view from above (Google Satellite) - our house on the left; dog owners' house on the right:

What it looks like to hide in the bushes ... 155 feet away ... taking photos with an eight-power (8X) telephoto lens, while the disabled guy (that you've been abusing and tormenting) takes three minutes to water his tree ... while openly and legally carrying a handgun on his person ... so you don't hurt him.  

Hurt him ... more:

And THIS ... was the view out our window of the precious sister-puppies.  Imagine when they were between the neighbors’ house and the fence line, running toward the street (as they often were, when ANYBODY passed by either of our houses), and barking ... and barking ... and barking:

UPDATES:

In September 2014, I began having dizziness and shortness of breath episodes, determined to be Atrial Fibrillation and Atrial Flutter.  Cardiology sent me to Electrophysiology (EP).  

The EP doc had previously seen two cases of DRESS Syndrome before, so ... while he deemed it critical that we get the arrhythmias under control, he didn't believe that either of the two options (antiarrhythmics + anticoagulants or heart surgery (bilateral cardiac RF ablation) PLUS anticoagulants) was safe.

So the heart trouble gets worse.  

I've had dozens of episodes of near-syncope (world goes gray/black, almost passing out).  I wonder if these people really DID kill me ......

----

In January 2015, I was interviewed (for the full hour) by the On The Commons radio show -- a show about Homeowners Associations:

LINK - CLICK HERE

The audio podcast can be found here:

LINK - CLICK HERE

----

Neil can be reached at Neil0502 [at] Yahoo [dot] com

Or .... then again ... maybe not.

Just heard back from the Chief of Allergy:

Hello Mr. Brooks,
Since our visit, I've been gathering more information on the lymphocyte toxicity testing.
I reviewed this with our immunology laboratory who confirmed there is no academic immunology lab in the US that does lymphocyte toxicity testing for drugs. It is not done anywhere here.
I corresponded with Dr. Shear who felt that Dr. Rieder who is the director of the Drug Safety Lab, Robarts Research Institute was excellent and a reputable laboratory. He didn't know though whether they had a validated version of the assay for Trileptal and Cymbalta.
I corresponded with Dr. Rieder the director of the laboratory. He felt they could test for Trileptal since it is an aromatic compound, but testing to Cymbalta would be very experimental. He is having his technician send the protocol. He asked for advance notice/scheduling as they are the only lab in North America with this capacity. I inquired about cost and he is getting back to me on that also.
So at this point, I am waiting the protocol from the tech. I envision these problems:

1. The need for a control being sent also. This is because the test itself is highly sensitive and the transport of the blood can cause changes in the cells that will alter the outcome. Without having a control sent from the same place and going through the same handling, it is difficult to interpret results.
2. Coverage of the test.
3. The experimental nature of the Cymbalta testing.

I expect to hear back from them later today and can update you. It may be easier to have this done at a later date and sent from a different office where the control etc can also be obtained. Our lab will not be able to do this.

Dr. Volcheck 

Can't ask for a more thoughtful and thorough reply.  But ... looks like this isn't going to happen.  Not here, at least.

I think I'm going to try to make a plan to fly out of here, this weekend.

This morning, Internal Medicine wrapped up with me.  In terms of getting sick so often, and having had multiple serious drug reactions, she said I'm "just not lucky."

In terms of moving forward .... with regard to meds ... she tends to agree with Dr. Volchek: try to be lucky in the future, and avoid meds.

If the lab really can't confidently test both drugs .... well ... it's nowhere near as valuable.

Not sure what I'm going to do, but ... I don't have any more clinic appointments -- just a dinner reservation at Pescara, early this evening.  After that, I'll check into logistics.

Ciao for now .... as always .... from ... The Gulag.

Allergy/Immunology, revisited

Ohhhhh-kay.  'Nother update.

Just met with the Chief of Allergy again.  This worked.  He didn't seem rushed.  He seemed very open.  My play went something like this:

"You've got a TON of patients to take care of.  I just have one: me.  I think I can add value, here."

Told him who I'd talked to, what I learned, and what I believed.  He said ... "I think that makes sense."  He checked my chart for when I had taken the anticonvulsant, and said ... "Yep.  That fits."

If at all possible, he will order the Lymphocyte Toxicity Testing.  The only place I knew of was up in the Toronto (Canada) area.  I showed him the PDF.  He jotted down all the relevant information.  As long as the Mayo lab can draw the blood, package it up appropriately, and ship it out appropriately ... we can get this done.  We'd plan to check the anticonvulsant AND the Cymbalta.

I talked to him about "neosensitization --" could I have become 'reactive' to other drugs taken during the same time.  He wasn't really aware of the concept, but took the time to look at the peer-reviewed paper that I showed him.  He thought the conclusions were sketchy, the sample size was very small, and that the risk was extremely low.  I actually tend to agree, but .... wanted to cover it out of an abundance of caution.

And ... I mentioned ... since THREE docs have now mentioned HIV as something that would explain my immune and medication reaction issues ... though I'm HIV-negative ... I said "It sounds like we're talking about some fairly serious immune problems, if they're consistent with HIV."

I asked him about evaluating my B-Cell and T-Cell function.  While my total lymphocytes are normal, he WILL check the B and T cells underneath that count.  Frankly, if there's an issue there ... nothing can be done about it, but ... I still want to know.  If you know what it's called ... you can keep track of ongoing research and developments.

When I explained my read on the history of my lab work regarding EBV and CMV, he agreed: the whole AHS/DRESS > immune suppression > viral reactivation thing ... fits perfectly.

This guy's sold.  Now, it's just a question of pinning down the trigger and staying FAR, FAR away from it.

Infectious Disease, tomorrow morning.  We have a few things to look for and discuss.  They may or may not merit treating.  Unclear.  I smell .... yet another blood draw ;-)

And then ... Internal Medicine.  I have to talk with her about things that follow AHS/DRESS, and ... not too UN-commonly ... like .... autoimmune diseases and something called "Fulminant Type 1 Diabetes."  

1 in 5 die from AHS/DRESS.  It's pretty serious.  It can have recurring consequences over the long-term ("sequelae").  I have to get a better understanding of what to watch for, how often, and with whom.

My family's oldest and dearest friends .... Barb and Don ... paid for me to go eat at the best-reviewed restaurant in Rochester, MN -- Pescara.  I'll do that tomorrow evening.  Wonderful people.  Really incredible gesture.  So ... if you're out there .... thanks SO much, Barb & Don ... as always.

The Biopsy Guru Weighs In.....

Dr. David Kleiner, of the National Cancer Institute, and a member of the Drug-Induced Liver Injury Network just weighed in:

The short answer to your question is that it is not possible on the basis of histology alone to distinguish duloxetine DILI from the liver injury you see in DRESS because neither is a specific thing.  Particularly DRESS or AHS, which are a constellation of systemic findings and liver injury that fall into the broad category of immunoallergic reactions.  The pathologic changes one sees in such cases include the changes we observed in your biopsy as well as a variety of other patterns.  When we tried to identify our immunoallergic cases in DILIN we ran into problems of case definition, because so many patients had various combinations of eosinophils in the blood, skin rashes and fever that a distinct population didn’t stand out.  Duloxetine does appear to cause an immunoallergic reaction, so it’s not clear to me that it can be excluded even if criteria are met for DRESS.   

I think this is a pretty helpful additional piece of evidence.  If the AHS/DRESS event did/does look different, when the liver biopsy specimen is viewed by a pathologist, then we could have effectively ruled it out.

But it doesn't, so we can't.  That's something.

Now ... if one of these two drugs was going to cause an allergic reaction, it is HUGELY more likely to have been the anticonvulsant than the SSNRI, because:

1. 30+ years of data says so
2. I've never had a reaction to Cymbalta before, and I've been off and on it for years
3. I DID have an allergic reaction to sulfa.  Remember: those who are reactive to sulfa are quite often allergic to anticonvulsants
4. I also had a serious reaction to Gabapentin, ALSO an anticonvulsant, though a different class

Let's be realistic, Folks.  If the glove doesn't fit ... you must acquit ;-)

I'm waiting for my 2pm app't with the Chief of Allergy.  This is helpful.

If I can't persuade him through good looks and charm alone, I'm going to try to get him to phone this guy.  He wrote the book on AHS/DRESS, and knows all about the relevant testing.  Test me to BOTH drugs, and see to which one(s) I react.

If it's only one, it's a slam-dunk.

If it's neither or both ... well ... pffft.  We're still confused ;-)

I'll also tell him about my Friday conversation with Dr. Laurie DeLeve.  Yeah.  I'm a name-dropper.

After this morning's app't, I walked the skyway a bit, eventually walking up 14 flights in a Mayo building.  I also just walked up the 15 flights to my Allergy appointment.

One step at a time ... right here ... in the slightly diaphoretic, overworked alveoli of ... The Gulag ;-)

To Bi ... or ... not to Bi......

Minor update......

I got a call, yesterday, from the now legendary Dr. Yan Bi, GI Fellow.

Seems she accidentally ordered the stool specimen when she meant to order a blood draw.  She was only looking for one obscure thing -- alpha-1-antitrypsin deficiency.  Since that was all she ordered, they didn't look for infections ... or anything else.

Of course, if she had looked, that blood test had been done in California.  Hmmm.

She seemed pretty genuinely apologetic for her mistake.  I appreciate that.  She's young, though.  She'll learn ;-)

Perhaps more interesting ....

I told Dr. Bi that I was disappointed in Gastroenterology's unwillingness to consider an immune-mediated problem, and orchestrate a referral, or pick up the phone and call a Mayo colleague.  

"But we don't have any expertise in DRESS Syndrome or Anticonvulsant Hypersensitivity Syndrome."

I went on a bit.....

"I know.  I know you don't.  I get that.

But wouldn't you think somebody in the Mighty Mayo MIGHT know something about it ??  Isn't this a teaching hospital ?  Aren't you famous for collaborating inter-departmentally to try to puzzle through the tough cases ?  Even if it IS this DRESS/AHS thing ... because it HAS GI/liver involvement ... wouldn't it be a good thing for you guys TO recognize ??

I think it's the wrong move to send me to another GI guy in North Carolina when we haven't looked at the immune suppression > reactivation of latent virus > DRESS/AHS hypothesis.  I think there's a LOT more that could be accomplished here before bypassing all other options and sending me half-way across the country to yet another liver guy, particularly if he's 'just' a liver guy ... like the Mayo GI/Hepatology folks."

Dr. Bi was quiet for a moment, and then said .... "I actually agree with you."

Hallelujah.  That's uncommon among doctors, and probably even LESS common among Fellows at the Mayo Clinic.  You're not supposed to disagree with The Company.  

Again ... she'll learn ;-)

She went on to reiterate what my upcoming appointments looked like.  You're seeing Allergy, again, and then ......

"Dr. Bi: I'm really grateful for your call, your willingness to take responsibility for a mistake, AND your honesty ... but I know what my schedule is.  Thanks for all your help."

Dropped off the saliva/DNA specimen, and had a fasting blood draw, this morning.  Then, had to have my BP checked.  Despite two large coffees, 100/70.  Unfortunately, it still looks like I'm going to live forever ;-)

Going to have a BIG, greasy, NASTY hamburger for lunch, today.  If they have milk shakes, I'll probably have one of those, too.  That'll teach 'em ;-)

By the way ... having had not one drop of ETOH (alcohol) since 11/21/13 (I just checked the date), I've now asked a couple of the docs if they think I can safely have a beer, or a glass of wine, with dinner.  Nobody's biting.  They won't answer.  They just look at me.  

How dry I am ;-)  Cough, cough, hack, hack.....

Ciao for now ... from the blood-depleted, all-out-of-saliva, totally-cotton-mouthed satellite offices of ... The Gulag.

With admirably low blood pressure, I might add :-)

AAAAAAAaaaaaaaaaaaaaaaahhhhhh !!!

Walked for about 25 minutes, but was just too tired to keep going.  Came back to the room and passed out.

Woke up when the phone rang.  It was Mayo, telling me that Internal Medicine has referred me back TO the SAME Chief of Allergy that I saw ten days ago -- the guy who didn't want to run tests to figure out what drug tried to kill me.

That's special.

But that's not why I'm screaming out.

When I stopped in the lab to pick up my P450 DNA saliva specimen kit, I asked for help tracking down my lost stool sample test results.  

After a series of phone calls, the very helpful lab tech found out that the results HAD BEEN ready since my b'day (5/2), and in the system for the doc to review.

I've asked the doc three times if she's seen the results.  Nope.  The third time was this morning, before chatting with the lab tech.

This afternoon, I received the following reply from the doc:

I don't see any stool result. As a matter of fact, I don't see orders for stool.

AAAAHHHH !

Yes.  THIS is what I'm screaming about.

I called the Lab Tech.  Can you please tell me who ORDERED the stool test ?  Sure.  It was Dr. Yan Bi, the Fellow in Gastroenterology.

I told her what Dr. Bi wrote to me.  

Chris was very frustrated.  She's going to call Dr. Bi, and explain to her how to look up a lab result in their system.

I said ... "Chris ?  Somebody ordered this test, right ?  I mean ... you guys didn't just hand me a random specimen container, and ask me to give a stool sample, right ?  Somebody DID order this for me, right ?"

She laughed.  "Yeah," she said, "Dr. Bi ordered it.  I'll have to call the doctor and have a little chat with her."

Thanks, Chris.  Thanks a lot.

Mayo is a big system.  Big systems are imperfect and disorganized.  I know that.

But this piece has been hugely frustrating.  Dr. Bi is a student, and she's making some pretty rookie mistakes at my expense.

I also mentioned to Dr. Bi that I'm a bit disappointed that -- as the patient -- I have to self-refer to Internal Medicine, in order to get a more thorough approach to getting the correct diagnosis.

To that, Dr. Bi responded

Usually it is easier and faster for patient to get Internal medicine consult than referral from a specialty clinic.  

You have been evaluated by our allergy department who recommended checking HIV and IgG for you. You have also been evaluated by our genetic department who does not feel like you have a mitochondria disorder but recommend a pharmacist consultation. 

[Yeah.  I know what HAS happened.  We don't move the ball forward by telling me what I already know.]

What I don't know is .....

  1) Why nobody seems interested in finding out -- for sure -- which drug did this to me, when it seems infinitely possible and relatively simple

  2) Why a guy with a diagnosed IgG Subclass Deficiency isn't being evaluated when his total IgG level (the sum of the level of all the subclasses) dropped 15% through this liver crisis

  3) Why I wasn't given an appointment with somebody to 'manage' my care, from the beginning

  4) Why she doesn't think I ever took an anticonvulsant

  5) Why I NEED to self-refer for something (like DRESS Syndrome or Anticonvulsant Hypersensitivity Syndrome) if it fits the facts.  I can't believe a cancer patient has to decide that he needs to see radiation, oncology, surgery, infusion therapy, etc., for themselves, and then call each of those departments, try to convince them that he has cancer, and then beg for an appointment

  6) Why I have to work so hard to get HER the results for the test that SHE ordered, particularly when she swears she never ordered the test in the first place 

  7) Why the Genetic/Mitochondrial doc and the PharmD guy had to suggest the P450 testing (instead of Allergy or Gastroenterology/Hepatology).

Actually, Dr. Bi .... what HAS Gastroenterology/Hepatology done, so far ?  Told me that it was a Drug-Induced Liver Injury (I don't think so), and that I should go to North Carolina ?

So far, this is a very frustrating experience.  Let's hope it gets better as things move along......

Doing this medical thing is hard enough, Folks.  Fighting the system .... well ... that takes a fire in my belly that's been absent for too long.

Stay tuned.......

Movement ??

I got in to see Primary Care, this morning.  Yea !!

Next steps:

 - Cytochrome P450 testing (DNA test, from saliva)

 - referral to Dermatology (the ongoing skin issues, since the Christmas crash)

 - referral to Infectious Disease (look for 'hidden' infections, like Cytomegalovirus, Human Herpesvirus, Epstein-Barr Virus) that may have flared up and caused the hepatitis

 - referral to Immunology (try to figure it all out)

On Friday, I placed a call to, and spoke to, one of the two authors of THE book on Drug Induced Liver Injury.  

She was great.  

In short, she thinks my theory about DRESS Syndrome/Anticonvulsant Hypersensitivity Syndrome is a whole lot more likely than the Cymbalta thing.  She also thinks that the Lymphocyte Toxicity Assay (testing for which I've been pushing) is exactly the right way to be sure, since it's VERY accurate in determining a genetic, flawed response to anticonvulsants.

Also, I once had a fairly severe reaction to Bactrim (a sulfa antibiotic).  She was pretty sure there was "cross-reactivity" between Sulfa and anticonvulsants.  

That means ... those who react adversely to one are highly likely to react adversely to the other.

As I think I did.

I checked.  She was right.

She was SO great on the phone ... that she even said ..... "I don't think your case is all that complicated.  You probably should have the P450 testing, and should stay away from anticonvulsants and sulfa drugs."

[sounded eerily familiar to me, since it's pretty much what I've been saying ....]

I would still want somebody to look at the neosensitization thing, out of an abundance of caution.

This is the problem with Mayo's approach.  Rather than rule in/rule out that I have an immunological problem with anticonvulsants (that would explain everything), they found it easier to warn me off of any and all "non-essential" prescription drugs.

Still not sure how long I'll need to be here, but .... things are starting to move, once again.  

I'm just going to have to put North Carolina on hold.  They really want to enroll me in one of their studies, for which you need to be seen within six months of the liver event.  That would put it at late-June.  I'm not so much looking to be in a study, though, as I am trying to figure out what happened, why, and how to avoid it in the future.

Besides ... if I'm right (and I think I am), then this is really much more about Immunology than it is about Gastroenterology and Hepatology.

So ... hold that thought, UNC.

I also spoke to the lab, this morning.  The ... er .... stool sample DID get processed, and the results WERE put live.  They told me to get in touch with IT (basically) to figure out why neither I nor any of the doctors could view the results.

One day at a time.......

Ciao for now ... from ... the cool, rainy, overcast, and generally NOT Southern California weather of ... The Gulag.

My Mayo Liver Doc (not the Fellow) Weighs In....

AHS is not within my area of expertise.  I do believe you should be evaluated by someone who is well versed in drug induced liver disease as a starting point. Dr. Bonkovsky would be a good person to start with

Okay.  Let me see if I understand correctly.  You don't really know much about Anticonvulsant Hypersensitivity Syndrome, or .... DRESS.

I guess that doesn't bother me, per se.  It might not BE a Gastroenterology/Hepatology thing.

But it doesn't sound as though you gave it a moment's thought, huh ?  

Maybe another department, at Mayo, would know a ton about this stuff ?  

Maybe a referral in this area code or time zone is still better than a referral to a liver guy in North Carolina -- particularly if this was really immunological or infectious, rather than being a straight liver thing ?

Nope.  I'm staying in Rochester, and will keep camping out in the lobby until Internal Medicine sees me.  I think I need to be seen by an Immunologist AND an Infectious Diseases doctor.  I think that's easier here than it would be in North Carolina.

So that's the update.  I got a walk in, but it was cold, ominous and windy.  Passed out when I got back.

Tomorrow's another day ... here ... in the meteorologically imperfect Northern reaches of ... The Gulag :-)

Will probably just cry a bit .....

I think it's probably time.

Haven't gotten in, yet, to be seen by Internal Medicine.

But ... after sending a couple of concisely worded messages to the Liver Docs .... about Anticonvulsant Hypersensitivity Syndrome  (AHS) ... I just got a reply back from the Fellow:

"But, Mr. Brooks. You didn't take an anticonvulsant, did you ?

You're kidding me, right ??

Of course, I wrote back and immediately corrected this little situation, but .... it's emblematic of what I'm up against.

[Yeah, I'm advocating that we consider a diagnosis of Anticonvulsant Hypersensitivity Syndrome, even though I've never taken an anticonvulsant in my life :rolleyes:]

Meanwhile ... I checked yet one more thing, to verify the goodness of fit OF Anticonvulsant Hypersensitivity Syndrome: would the liver biopsy slides look ANY different if it were AHS or if it were Drug-Induced Liver Injury (DILI) ??

The answer is no.  They should look exactly the same.  Hmmm.

I'm now offering my physicians a light-hearted $100 wager that it WAS AHS, and NOT a DILI.  I know what testing is needed.  If Mayo will do the blood draw, I found one of the very few labs that can DO the testing.  

It is my intention NOT to leave Rochester, Minnesota (or to leave these good people alone) until my hypothesis has been clinically explored.

Been in the Lobby since 6:45am, today.  Only about 40 minutes left until today's standby session is over.  Doesn't look like Internal Medicine and I will meet, today.  I will arrange to stay another week .... later, today, and resume my rightful place in this lobby at 7am on Monday morning.

Ciao for now ... from .... the mildly-medically-frustrated reaches of ... The Gulag.

Go, Tarheels ???

"You're a remarkably well educated patient.  Are you IN medicine ?"

"Not by choice, Doc ...."

And so it begins.

I'm being referred to another Hepatologist -- this one, at University of North Carolina.  I spoke with him, this morning.  As of right now, he concurs with the Chief of Allergy, at Mayo: don't take ANY drugs unless "there's a strong indication for doing so, and with considerable care."  

But ... I reiterated ... if this truly WAS caused BY the immunosuppressive effect OF the anticonvulsant I took in October ... reactivating a latent virus (or infection), then this was NOT a "pure" Drug-Induced Liver Injury, right ?

He agrees it's possible, and would have me be seen by their Infectious Diseases guru, along with their Liver Center.

For now, I'm sitting in Mayo's lobby, "flying standby" to be seen, if possible, by General Internal Medicine, and -- hopefully -- Infectious Disease.  May as well try to get my theory explored while I'm here.

The referral came about as a result of my cousin talking TO my Mayo Liver Doc.  The Liver Doc says the requisite testing is beyond the capabilities of Mayo.

But he's still talking about a clean Drug-Induced Liver Injury.  I'm not.  I need to be 100% sure (if at all possible) that this was NOT infectious before *I* believe it was purely drug-induced.  That may NOT be possilbe (being 100% sure), but ... if they DO decide that I AM infected with Epstein-Barr Virus or Cytomegalovirus or Human Herpesvirus (or similar), and DO find antibodies in my blood ... well ... we may yet prove it was NOT cleanly drug-induced, but ... rather ... immune-mediated, meaning .... just avoid EVER taking an anticonvulsant again, and you'll be okay.

Unless I've BECOME allergic ("neosensitization") TO any of the drugs that I was taking WHILE the Anticonvulsant Hypersensitivity reaction took place.  It happens.  It's documented.

My theory is a desperation move, but .... their theory is an extreme long shot, too.  My theory also implies I treat the underlying infection, if possible, avoid ONE class of meds, try to explore new allergy to the OTHER classes of meds, and ... maybe ... move forward with a longer leash than I have, today.

I'll stay in Rochester until I can be seen by Internal Medicine, and any other specialty they deem appropriate (eg, Infectious Disease, Immunology).  

Meanwhile, I'm gathering up my records, and will forward them to the UNC Hepatologist for HIS team's review ... once I'm finished at Mayo.

I'll be seen in North Carolina within a few weeks.  May go from here TO there.  Dunno' yet.

"Flying standby" means sitting in the lobby for hours each day, waiting for an opening in the schedule.  They think I could get in within a few businesss days.  I'll extend my hotel, and cancel my Saturday flight to hang out here a while longer.

Stay tuned.......

#WhiteWhine

Sort of......

I have to whine, rant, and vent a bit (more)....

I probably got sick in early or mid-December.  Just ... pretty much stopped getting out of bed.  That's not like me.  I move.  I like to move.  I need to move.

Then came Christmas Day, when it HIT.

On 12/26, I had a scheduled Pain Clinic appointment, and I went.  Not a doc I knew, but I told him about the fever, chills, and dark urine.  He replied, "You should talk to a doctor about that."  It would have been funny sarcasm, but for the fact that it wasn't meant as either.

That day, I stopped into Primary Care, told them what was going on, and that I needed to be seen by a doctor.  January 15th was the first available appointment.  I probably should have gone to Urgent Care or the Emergency Room, but ... I was so tired ... I just didn't care.

We know what happened next, and it was bad.

By the time I was referred to Gastroeneterology (gut) and Hepatology (liver), it was February 5th ... almost six weeks later.

Yesterday's pharmacy guy and I agree: it's quite likely that the anticonvulsant I was given suppressed my immune system, and allowed some hidden infection to rage.

UC Irvine tested me for Epstein-Barr Virus (EBV) and Cytomegalovirus (CMV), either of which could explain every aspect of what happened to me, AND how I'm feeling now.  In both, the test results indicated "past infection," but not "current infection."

So they blew those off.

In looking at those lab test results, Mayo blew those off, too.

But I awoke, this morning, profoundly exhausted ... with whole-body chills ... and went back to bed.  I never go back to bed.  I may WANT to ... but I don't ;-)

When I awoke, I put on my four-pound, fish-bowl glasses and tried to understand the EBV and CMV test results, asking myself .... how long does "current infection" SHOW UP in the blood before it looks like "past infection ??"

The answer was crystal clear: the markers for "current infection" fade to black within "a few weeks."  My blood wasn't tested for these things for six weeks ... from the worst of it (I don't really know what the first of it was .....).

When I had a severe reaction to an anticonvulsant in about 2004, it was believed that the med suppressed my immune system, and allowed some hidden infection to flourish.

When I had a severe reaction to the DPT vaccine in about 2007, it was believed that the vaccine had suppressed my immune system, and allowed some hidden infection to flourish.

In October ... against my better judgment ... I allowed the Pain Clinic to put me on a low dose of another anticonvulsant (to treat neuropathic pain).  I got sick immediately, and stopped taking the med.

Maybe I never got better ?  Maybe that's what set up the liver issue.

There's ample research that shows that anticonvulsants can suppress the immune system.  Other ample evidence says that you can BECOME allergic to ANY med you're taking during that "Anticonvulsant Hypersensitivity Syndrome" immune crisis.

If I can't take this further, with Mayo ... somebody ... somehow ... somewhere ... I'm going to leave Rochester, Minnesota wondering when the next bomb is going to go off.  All it would take is one more good sinus infection, and a course of antibiotics, and ... potentially ... BAM !!

:-(

I've now asked three departments if they will refer me to General Internal Medicine.....

UPDATE: Just got a call from the husband of the Rochester, MN cousins.  He works in Gastroenterology research, at Mayo (, as it turns out....).

Bless his heart .... 25 minute call.  I told him what was going on -- what we THINK, what we KNOW, and what I think (with which Mayo doesn't necessarily agree).  

In short, he agrees that this is neither a simple, nor clean, nor straightforward presentation of .... well .... damned near anything.  

[Can I get an 'Amen ?']

He can make no promises, but he's going to talk to the GI/Liver doc who saw me, and talk about how we can poke, prod, and look further -- "peel back the layers of the onion a little bit," in his words.

I haven't had a drop of alcohol since October.  I could use a drink.  Ditto some (more) junk food.  I eat too darned healthy.....

Maybe a burger, fries, and a Coke for dinner.  Take THAT, liver !!!!

Ciao for now ... from ... the still confused, and existentially weary, offices of ... The Gulag.

The Wind Just Changed Direction ... if only slightly.....

This is the way it goes .....

I just met with ... Medications Management (or something like that) -- a really cool guy with his Pharmaceutical Doctorate degree.  

USUAL CAVEATS: Long story short, my words -- not his, but .....

He doesn't know why Mayo booked me with Gastroenterology/Hepatology, and NOT a Primary Care doc to coordinate all of this (neither do I).

He thinks I NEED to be seen by a "really good" Infectious Diseases guy, since he believes some of these med reactions HAVE suppressed my immune system, and could EASILY have reactivated some underlying virus or infection.

Of course, HE can't refer me to any of those groups, but ... more on that, later.

He went through all the meds with me ... to which I'd had noteworthy adverse reactions, and ... using the Up-To-Date website ... we evaluated how each was metabolized.  The Cytochrome P450 enzymes are largely responsible for breaking down things like drugs.  

In humans, it's believed there are about 57 such enzymes that matter.

Each of the main meds to which I've had an adverse reaction, and ... all five of the meds I was on when the Christmas thing happened ... are metabolized, at least in part, by one or more of THREE different CYP enzymes.

It looks like they (Mayo Labs) CAN run genetic testing (to look for disorders) for those three CYP enzymes.  Doing that is a no-brainer.

It looks as though Mayo can test for a number of OTHER CYP enzymes (to see what other classes of drugs MIGHT kill me).  That is a no-brainer to me, but will undoubtedly take me fighting with Mayo and/or my health insurance carrier.

It turns out I have a cousin, here -- a retired Administrator from Mayo.  It turns out ... her husband is a Mayo Gastroenterologist/Liver Doc.  I've reached out to them, and should talk to them tomorrow.

The PharmD's notes are going to be sent back to the Genetic/Mitochondrial doc.  She (the Mito/Genetic doc) referred me to Pharmacy.  That's how it works.  She would also have to decide what testing to order, and order it.

I'm going to have to push for a few things .... probably starting with Gastroenterology, and HOPEFULLY with my GI doc cousin's assistance:

- a referral to a GREAT internal medicine doc ... hopefully leading to

- a referral to a GREAT infectious disease doc, and

- as much of the P450 testing as I can get

Mayo's been tough, Folks.  They were tougher than me last time, and they're tougher than me this time.  I've been pretty darned sick, and really darned exhausted.  There's no fight left in me.

This PharmD guy .... rekindled a tiny ember .... not yet a spark ... but a tiny ember in me.  

He was my last scheduled appointment (outside a 5/12 Psychology app't that I was leaning toward canceling).  When he asked me what was next on my schedule, I told him that: nothing.  He seemed genuinely and deeply troubled by that ... FOR me.

This isn't likely a game changer.  The most it does is support my long-standing belief that:

- I have something very basic wrong with my immune system

- I have some underlying infection(s) that recur during times of stress

- I have some problem with how my body processes medication

Figuring out something in the infection group .... as always ... points to meds to treat.  That puts me squarely in the face of that third problem ... again.

Getting these referrals won't be easy.  

Getting the reasonable and appropriate testing authorized and ordered won't be easy.

Getting a solid diagnosis(es) won't be easy.

Treating whatever they do find won't be easy either.

But at least I had one guy who basically said to me: don't go home.  Don't give up.  Not yet.  It's not over yet, or ... at least ... it shouldn't be.

Stay tuned.....

Another day, another doctor :-)

I met with the Mitochondrial/Genetic doc, this morning.  

Nothing particular accomplished.

I don't fit the profile, at all, of having a primary Mitochondrial Disorder.  Neither does she think there's reason to check FOR secondary mitochondrial problems that may have been drug-induced.

She basically said ... she doesn't think mitochondrial problems explain my situation, and that ... even if genetic disorders do ... we've only sequenced the genomes of about 7,000 of the probably 22,000 genes, and there's nothing actionable to be done, even if they DO find genetic issues in me.

Translation: it's expensive testing, and you don't seem to qualify.

Although she couldn't honestly say how much of my drug reactions were 'metabolic' (how drugs are metabolized by the liver) versus 'allergic' or 'immune-mediated,' she did recommend I get P450 testing, and referred me to Pharmacy to see if they'll order it.

It's one of the tests that Allergy/Immunology deemed not worth doing.  They were probably right, but .....

This afternoon, I was seen by Ophthalmology.  

The ophthalmology technician couldn't measure the alignment problems of my eyes.  She finally said that ... if I wasn't seeking an eyeglass prescription from Mayo ... could we skip this part ??  Yeah.  My eyes are vexing to most eye doctors.  The alignment issues are very rare, very unstable, and can change from minute to minute ... like the focusing issues. 

The opthalmologist said what they always say: your eyes are bone dry, but do not show obvious signs of 'corneal staining --' true pathology ... scarring ... frank disease.  The corneas did not seem swollen.  No obvious meibomian gland dysfunction or blepharitis.  

He didn't seem to know much about Corneal Neuropathy, but understood my .... er ... discomfort.

He also said he saw enough loose conjunctival tissue (conjunctivochalasis) to understand why scleral lenses were no longer an option.  He mentioned the chalasis surgery, but said it has its own inherent risks, and that .... as I've heard ... the chalasis is likely to return, particularly with the amount of suction a scleral lens MUST have in order to stay in place.

He went over all the basics about lubricating drops, punctal plugs (mine are all cauterized), fish oil, moisture goggles, humidifiers, etc., etc., etc.  Very nice guy, but I just smiled and nodded.  You're only looking at my eyes with a 40 power microscope, Doc.  Get your hands on a confocal microscope, and check out my corneal nerves at 1000X maginification, and THEN we'll talk ;-)

But there was a clear positive, today: I walked for almost an hour AFTER Ophthalmology (with my eyes fully dilated, and clamped 99% shut in the Minnesota sunshine), and ... rather than need to collapse on the bed .... had enough energy to stop for a nice dinner before heading back to the hotel.  

It was a moment, and I had to be grateful for it.

When I got back to the room, I saw a couple things on my Patient Portal website: the reports from Pathology's review of my liver biopsy slides and the report from Radiology from my abdominal ultrasound.  Long story short ... it just looks more and more like it was a drug-induced liver injury, attributable to Cymbalta.

While most alternatives would be worse .... this one DOES mean ... that the whole "prescription meds" thing is now INFINITELY complicated.  In some ways, a worse diagnosis would have been simpler.  

I've been saying that since Christmas.  Nobody really agrees, but .... hey.

But I don't think I can wonder, much longer, whether or not it was drug-induced.  I think I'm sold.  

Still awating all the ... er .... stool sample results and Radiology's review of my ORIGINAL MRI images where they saw a 'stricture' in my hepatic bile duct.

The results of my Total IgG came back significantly lower than they were in January.  Should we test for the IgG Subclasses ... which is the basic nature of my Primary Immune Deficiency (IgG Subclass Deficiency) ??  The Immunologist said no.  My total IgG wasn't low enough to merit checking the subclass levels, even though .... if it was my already-deficient subclass levels that fell further ... that might explain the ongoing infections.

Nope.  Sorry.  Not gonna' do it.

The culture test came back on the snot found in my ethmoid sinus.  Staph Aureus.  Aware of my drug issue, the ENT is prescribing a kind of antibiotic ointment ... that I can dissolve in a saline irrigation solution ... and use to rinse out my sinuses a couple times a day.  I'll buy the stuff tomorrow and start on it.

So ... yeah ... sinus infection.  That wasn't a surprise either ;-)

The tired has set in.  The dry room is searing my poor peepers.  Gotta' put my prescription swim goggles on ... watch TV ... and go to bed early.

Another day down ... with just a hint of style and grace ... here ... in the Gulag.

Give me Ham on Five, Hold the Mayo....

Reference from the movie, "Airplane."

Happy 50th to me !!!  Nah.  I didn't do anything.  Nah.  I may not.  If I'm less tired over the weekend ... maybe something.  Not today, though.

Been at Mayo a few days now.  Here's the long and the short of it:

They still think whatever happened to me was a Drug-Induced Liver Injury, and that the Cymbalta did it.  That's their best guess, plain and simple, but everybody agrees: that's it.

Radiology is still supposed to review my MRI images from UC Irvine.

Pathology is still supposed to review the biopsy slides.

My platelets were low again.  My spleen is enlarged, but the liver doc didn't notice that until I pointed it out to her.  Is this all because of the liver injury ?  Do I need to be monitoring my platelets ?  Shouldn't this have been over and better by now ?  Does any of THIS explain any of the ongoing symptoms ??

They don't know.

I don't think the liver docs have any direction, yet, from the Drug-Induced Liver Injury doc in Indiana, about testing.  Still waiting.

Fairly long visit with Allergy and Immunology, this morning.  My words, not his, but I promise you it matches up with the substance of what he said:

 - In most people with a drug allergy, they have ONE class of reaction and/or it's a reaction to ONE class of medications.  I've had several different reactions to several different classes of medications.  That makes me a very odd duck or an HIV patient (but I don't have HIV; was tested in January; told them to test me again, just to be quadruple sure).

 - He more than agreed with me about their drug allergy testing.  He didn't think it was worth doing.  It's not even right half the time, and it isn't particularly actionable because of that.  It also does NOTHING to account for being on more than one med, or one med over time.  We agreed not to spend the $$.

 - He agrees that -- since each drug event WAS worse than the last -- the stakes are now incredibly high.  Ticking time bomb.  No way to predict what will happen, how bad it will be, or when it might get triggered, but it is reasonable to guess the next one could easily be Very Very Bad.  He mentioned SJS/TENS, and began to explain them to me.  No need, Doc.  I've met a few handfuls of SJS/TENS patients.  Breaks your heart.

 - His advice to me was "If you don't _absolutely need_ a medication, I wouldn't take any."   Then he thought about it a bit and said, "I guess that's easy for me to say, isn't it ?"  I laughed.  "Yeah, Doc.  That's easy for you to say.  I have a banged-up immune system, chronic neuropathic pain in my eyes and Complex Post-Traumatic Stress Disorder."

 - They still don't think the IgG Subclass Deficiency is "it."  They see too many perfectly healthy people with the same Subclass Deficiency who show absolutely no symptoms.  That's what they told me seven years ago.  The thinking really hasn't changed.  Not at Mayo, at least.

 - I asked him for a referral to Psychology, if they had people who specialized in chronic medical conditions that had a profound impact on patient quality of life.  He was going to refer me to Psychiatry until I said .... "Nah.  They usually just give pills.  I'm allergic to pills."  I got the Psychology referral, but it's on 5/12 -- two days AFTER I'm scheduled to fly out of here.  May stay in the area, though.  Have to think about it.  Have had no luck thinking even a day out, lately.  Not even a few hours out.....

Had an abdominal ultrasound this afternoon, and had to drop off a stool specimen for the lab.  Waiting on a fair amount of blood work to come back from the lab, now.  Probably Monday afternoon.

This afternoon, I saw the Ear, Nose, and Throat guy.  Pretty sure he's the one I saw, here, in 2007.  He 'scoped' me.  BIG yellow glop of infectious material in my right ethmoid sinus.  He was able to suction it out, and will send it to the lab.  Anatomically, my sinuses are plenty open and not ridiculously inflamed.

Just ... infected.

But ... he said ... when the results of the snot study come back from the lab ... what should we do ?

He won't prescribe me an antibiotic, having learned what we now know, and won't prescribe me an antifungal for the same reason.

He wasn't surprised that my trials of steroids and nebulized [antibiotics, steroids, antifungals, and NAC] didn't work.  I'm just one of those patients who they really can't fix or manage, and don't know why I'm as bad as I am with recurrent infections and recurrent nasal polyps.

I asked him if sinus infections - left untreated -- WILL eventually resolve.

Not for everybody, but ... for the most part ... yes.  "But a guy like you could feel pretty miserable for a few months, if you can't treat a sinus infection."

Yeah, Doc.  I have that feeling, too.

Can the infections migrate, and become serious and potentially deadly ?  Yes, but that's very rare.

I didn't review the irony of that statement (ie, every issue I HAVE is rare) with him.  Why bother ? ;-)

He thought I should try a Xylitol based nose spray.  Not likely to help, but shouldn't hurt anything.

Monday morning, I WILL meet with a Genetic/Mitochondrial doc.

My vision has been very blurry, here.  I'm certain it's' the dry, heated air.  A stable tear film layer is critical to the whole focusing system.  You dry out a banged-up cornea and you get more blur.  Mine are very dried out.  Nonetheless, I'll also be seen by Mayo Ophthalmology on Monday.  They aren't all that good, in my experience, but ... what the heck.  I'm here.

This is kind of the end of the line, Folks.  I can think of nothing left to do ... nobody left to see ... nothing left to try.

 - Pray the pain away ?

 - Pray the PTSD away ?

 - Pray I don't get sick again ?

 - Just ... survive and exist until my energy starts coming back and I can DO something again ??

The odds .... are definitely not in my favor.

International travel seems ridiculously risky, now.  If I get sick overseas, I used to go see doctors and take the pills they gave me.  Now ... not quite so much.  Probably have to buy a MedicAlert bracelet, too, if they make any that say "No Meds !"

Oh ... maybe I could go spend six months living by the Bastyr Naturopathic College, up in Washington, and just pay them to try to rebuild my health, from the ground up, their way.  Maybe.

Everybody agrees with me that a lifetime of meds ... set against a basically fragile constitution ... and an unbelievable amount of sickness, medications, stress, pain, and surgery since the Colorado thing happened ... could easily have banged up my mitochondria pretty badly.

Yet another case of banged-up armor ... dramatically weakened defenses.

So ... while I DO want to know ... whatever I CAN know ... everybody agrees, so far: none of this is 'actionable.'  None of this can be treated.  The way things look, the box that defines my life is just profoundly small.  Claustrophobically so.

There wasn't a lot of upside to being optimistic about this trip, so I wasn't.  It's playing out as I guessed it might, plus or minus some Monday Morning Miracle on Mitochondrial Street (no way).

In my hotel room, I've mostly had to wear my prescription swim goggles to keep the dry air from further stressing my eyes.  But they fog up quickly, and ... I see very poorly out of them, so I'm getting very far behind on e-mails.

Sorry :-(

While I haven't been "sleepy," I've been maddeningly exhausted.  I walk to my appointments, and pretty well manage a 20 minute walk, twice a day, outside, but ... after that ... I collapse on the bed and stare dumbly at the television.

I'm eating well, but not much.  No appetite.  Losing weight again.  Que sera sera.

Fleegle The Frog is here.  My faithful sidekick.  He keeps his spirits up -- somehow -- no matter how dicey things seem.

Frog power, indeed.....

So ... Ciao for now ... from the 5th floor hotel room ... across the street from ... the Mayo Clinic offices of ... The Gulag.