Bill’s Story
Share My Personal Story with LDR? ie… Mi Vida Loco?
Hmmm… This feels something like fitting 20 years of living in Niagara Falls into a thimble full of words. I will do my best to keep it this side of a full novel. J
Early 1987, Austin, TX; I am the General Mgr. of a successful construction company primarily operating as a subcontractor to major homebuilders during the “’80s” boom. I am married with a beautiful wife, 1 baby daughter and another on the way. We live in our “dream home” and our 1st home as a rental.
My day begins with “lining out” my crews for the days work, returning any pending calls etc.. Then out to the field, checking current jobs, scouting new 1s…. The IRS only allows you to deduct the mileage to, and from work so I made it a point for my last stop of day to be at a developing subdivision in a rural Hill Country area near my home.
My wife very soon noticed tiny little ticks caught up in the cuff where my jeans met my boots. Thereafter, I found myself stripping in the garage and leaving both jeans & ticks outside to be dealt with by the Mrs..
March 1987. 2 “odd areas” appear around my left pelvis. 1 just above the belt line, the other just on or below that line. Neither one of us knows what they are; heat rash…? We go to a friend of ours who is an RN out of fear it might be ringworm and an issue for the baby. It’s not ringworm or anything she (RN) has ever seen.
You have to understand; we have a 10 month old baby, my wife is 6-7 months pregnant, the TX construction industry is collapsing & the company’s new insurance is balking at paying medical costs for the new baby. NOT a good time to be distracted by “minor issues”.I did see a Minor Emergency Clinic where they noted the situation but no one was the least bit concerned.
So my wife gave me a can of skin balm they used on both themselves and their horses (??) at her country home so I applied that to the areas. The 1 above the belt line disappeared quickly. The 1 ON the belt line was irritated but soon disappeared also. I was feeling really bad at this time but my industry has just virtually collapsed, my “company” declared bankruptcy and stress is at phenomenal levels.
At least that was the explanation for the “heart event” I had in May. That and dehydration, potassium loss from this “flu bug” I was fighting. I had a low grade fever and white blood cell count was thru the roof. Same thing when I was hospitalized a couple months later for; “Viral Syndrome - Fever of Unknown Origin”. And then things just got worse….Texas economy and in particular the building industry spirals down about as quickly as my health. Then 1 day I collapsed at work, helping 1 of my crews that was having trouble with a jackhammer. I was numb on my left side for 2 days. Filing for Workmen’s Comp was out of the question - I couldn’t afford it……..
November 1989. After my best friend puts me on a Greyhound Bus in Austin, TX - I arrive at my mother’s home and other extended family in tiny Port Aransas TX on the Texas Gulf of Mexico.(wonderful town but virtually at the end of the “world.”)
I weighed 138 lbs. (down from 178), I had Bells Palsy, I looked like… and felt like a prisoner of war detainee. An example - always a voracious reader, I couldn’t hold comprehension on a single paragraph. I was virtually homeless, 2 cardboard boxes of clothes to my name. Homes, cars, everything…gone. Family - wife had met a guy at work. He was parked around the corner, hiding the U-Haul truck when I left the house for work one day. Also turned out to be the day my company announced would be it’s last. That was a bad day!
My mother had recently suffered a detached retina from a fall, was on LOA from work and the 3 little rental cabins she owned were in poor, non-rent-able condition. The idea was to get healthy, help mom, bring the property up to “snuff”, find what on earth is plaguing me and get back to my profession.
I was not aware that the region I had moved to was virtually an LD “black hole”. I would later find out that the distinguished, preeminent Infectious Disease Expert in the nearby city of ??????? (I still have to rely on SOME treatment here) had quoted to the city’s newspaper: “Lyme Disease in Texas is a Myth”. Or that Julie Rawlings and the Tx. Dept. of Health had repeatedly tried to hold regional seminars on the growing cases of LD but had been blocked at every turn.
But oh, by the way - from her (Julie Rawlings) I DID learn the subdivision I had been visiting every day - and had been labeled a “Hot Zone”. Not only did some of the surveyors and construction supt.s I had worked with become ill, but also several of the homeowners as they moved in. Since I had moved away and fell thru the cracks, my # was added to the statistics but they did not follow my epidemiology.
I had connected with Ms. Rawlings after applying to the Texas Rehabilitation Commission for help in returning to work. It was THEIR Dr.s in Austin, after a positive blood test, first posed the possibility of a Lyme’s Disease diagnosis. I immediately received a letter from TRC; “Your disabilities are too severe to be considered for rehabilitation at this time”.
Later in life I caught the irony; “…officially your disease does not exist. But if it did, it is far too debilitating for our resources”… oh the irony) I was at a point I thought virtually near death when I was admitted by an ER physician for Acute Lyme’s Disease. My Attending MD ran blood test, looked over the symptomology, where I had been working etc… he concurred with the lyme disease diagnosis.
He immediately started me on IV antibiotics. Late afternoon of the 2nd day he came in and just started apologizing. He said that “higher powers” (the Infec. Disease Dr. is on hospital Board of Directors) had overruled his diagnosis. I would be released the next morning (at least he bought me 1 more day on the IV) and would be seen in follow up thru the Health Clinic (indigent health clinic).
He said; “I’m sorry” 3 or 4 times. And it is not embellishment to say that when he turned to leave, he looked like a man that had no answers.
Just after midnight that night I was awoken by a nurse that slipped into my room and sat at the foot of my bed. She told me that she had contracted LD on a camping trip with her family. That there was a local MD that was treating LD cases under the diagnosis of “mononucleosis”. This MD had been infected herself on a trip to Colorado. She gave me the MDs name and phone # and was gone…. I tell this true story because it sounds like the script from a bad “B” movie and sometimes that’s just what the medical farce of last 20+ years has felt like. This was in late 1990.
In 1991 after some real soul searching and collaborating with Ms. Rawlings (she was a compassionate lifesaver) I found a wonderful MD, in the vein of the great “country doctors” who by location treats the entire family of every known malady. He was in a nearby “shrimper’s town’, 1 step further up the coast. He has treated; “everything from bunions to Palestine Fever” in a community of people who would never go into the “big city” Dr.s. When he weighed the whole medical history, collaborated with Julie Rawlings re: the work site and their findings (TDH) an LD diagnosis just was not a leap of faith for him Oddly, being a rural MD in a diverse area where he treated a variety of infections/organisms, the city “politics of disease” didn’t surprise him either. Ms. Rawlings sent him TDH’s most current packet of treatment regimens and soon after I began a 21 day course of Rocephin. I would receive a 2nd course a year later when I was still exhibiting symptoms (midway thru 2nd course, a “main line” had to be installed due to all the damage to vessel walls due to Rocephin) It was just shy of 4 years from appearance of ECMs to treatment. While the Rocephin saved my life, it didn’t “cure” me of the LD but rather my symptoms actually seemed to get woreither. But it was the last and only substantive treatment I ever received for LD.
That was some 18 years ago and I promised; “no huge novel”. I cannot even mention LD to any of my medical doctors now. I got tired of being referred to psychologists. I have 9 separate specialists now, all treating life threatening issues.
They have no idea WHAT the causation is, only that it is “NOT LD.” Two months ago, just to appease me, my GP ordered a Western Blot in a blood series. When it came back he said; “see, Lyme Disease is out of the question!” (groan - Western Blot is ineffective at best & Never after 3rd or 4th week) I have ½ raised my daughters. Was the caretaker for my chronically ill mother for 17 years. And recently Dr.s told me they don’t expect me to make it much longer.
About a year ago I started stuttering, bumping into walls. Drooling… I had to agree with my Dr.s that something serious was wrong, but I guess since I wasn’t on the floor thrashing around, nobody paid much attention. I was referred to a neurologist who’s comment was; “well you ARE on a lot of drugs…”
Finally after a blow to the head I was humored with a brain CT. Then came “the panic” and an immediate MRI. I have at least 2 large “infarcs” on either side of the basil ganglia. Other areas of “uptake” plus my brain is laced with “prominent atherosclerosis”.
Plus - “prominent calcification of the invertebral cranial artery”. My next “event” is expected to be terminal. (oopsie) Add to that; degenerative disc disease - I am fused L4-S1 w/ fusion of L3-4 pending + C1-4. Fibromyalgia & CFS, Major arthritic changes of every joint viewed so far. Reconstructive surgery to my left shoulder and both wrists. My knees are a wreck; stay swollen to about the size of grapefruits 24/7, swelling to melon size frequently.
Ostenecrosis (dead bone) at the top of the left tibia. Osteoporosis. A metabolic disorder - my testosterone level was 19, the lowest any MD in this region has ever heard of & I receive injections weekly. Clinical Depression (duh), chronic pain, sleep apnea… There’s more, much more but you get the point.
Most of all, once a brush fire is put out, another explodes. Never with any MD asking the big WHY questions. I average about 9 MDs appointments a month. Plus all the testa, MRIs, all that goes with whatever the issue of the month is. I even have my own “psych trained” home health nurse that checks on me once a week to make sure that I haven’t stroked out or that my tongue isn’t drooping to one side.
Mi Vida Loco!
Bill Garner
Port Aransas, TX
WE ARE WITH YOU, BILL!
