Close this page

Tom D'Ambrosio's Story

Hello my name is Tom and I hail from Houston, Texas in the U.S.
I was "diagnosed" with Bechet's in 1988. I say "diagnosed" because it's a diagnosis I've never agreed with and was provided as a "best fit" answer to my problems. I am writing this mainly in hopes that someone reading it might have a better answer for me.

This is my (long/sad) story:

I've always considered myself a fairly healthy person. I had only missed about two days of school in my entire life and rarely caught cold. I have always had mouth ulcers though. They are inherited. My sister gets them as well. My father passed along the painful legacy, which he got from his mother. I have NEVER had genital ulcers, a distinguishing characteristic of Bechet's. My mouth ulcers, though frequent and painful, have never been excessively large or severe.

Anyway, in 1986 I graduated from High School and immediately enrolled in college. Life at home was pretty bad, with a violent alcoholic step-father that was always on my case about something, so I chose a college 2000miles/3600KM away from home in New York where most of my distant relatives live. My first year of college was ENORMOUSLY stressful (my two roommates were drug addicts while I don't even drink beer) and I was thrilled when the semester was finally over and I could return home to see all the friends that I hadn't seen in so long.

I called my mother back in Houston and told her I was coming home. She was thrilled. Moments later she called me back to say, "Don't come home. Jim (my step-father) wants you to stay in NY." And she knew he'd make my life hell if I did come home. I told her that there was no way I was going to spend my entire summer in NY. I hated NY and missed my friends. Not only that, but I couldn't just impose on relatives I barely knew for three months. ("Hi! I know you barely know me, but can I live with you for the next three months?") And it would be another *year* before summer vacation rolled around again. 12 more months in NY? No way!

Anyway, my mother arranged for me to stay with my father and my step-monster (not a typo) for the summer. This woman was pure evil (oh, could I tell you stories!) and made my step-father look like Mr. Nice-Guy. I agreed but it didn't last. I was pressured into taking a job working on a "Remodling Crew" for a large hardware store, and twice in that time things got so bad at my Dad's that I was forced to move-in with friends in this "roach motel" they called a house. I slept on the couch in front of a small a/c unit in the window.

Back at work, on the next-to-last day, (still) under enormous stress, dealing with my step-parents, living in squalor in 100' heat, eating poorly, having been in a minor car accident (that wasn't my fault but I got the ticket) and preparing to spend another torturous year in NY, one of the guys I worked with came to work sick, picked a fight with me and spit in my face. (one more bit of stress I didn't need.)

The following evening I developed my first symptom: a headache with fever around 8pm that only intensified as the night wore on. By 2am I was in such enormous pain that I was in tears, seriously considering drilling a hole in my skull to release the pressure building in my head. I didn't know it, but I had a severe fever and was sweating profusely. I didn't know what else to do except get in my car and make the one hour drive to my mothers house because of she had medical insurance. (How I ever made that trip is beyond me.)

I arrived at her house at 3am, screaming in pain. Panicking, she first tried to drive me to the local clinic (not the hospital), but upon realizing it wouldn't be open at 3am, instead drove me to my step-aunts house, who suffered from migraine headaches (this was no migraine) and hopefully could help. My aunt gave me two of her Tylenol with Codeine, which naturally knocked me out like a light for about six hours. This was probably the worst thing anyone could have done because now I was unconscious while my condition was worsening. By 9am I was awakened by the enormous pain, at which point I was finally taken to the hospital. I had a fever of 104' and they diagnosed me as having "spinal meningitis". They quickly did a spinal tap, which released the pressure and made me feel better immediately. (My spinal fluid was so infected, the extra space the infection was taking up was building pressure inside my head and would have killed a few hours later.) I was admitted to the hospital but after one week, all tests for "spinal meningitis" had come back negative. I was told, "We don't know what it was, but you appear to be fine now", so I was released. I spent the next week at my mothers before leaving to go back to school in NY for my second year.

30 days later, now back in NY (with new/better roommates), I relapsed with the same fever and headache. An ambulance had to be called to take me from my dorm room to the hospital. Only difference this time was that my fever was only 103'. After two days, the headache and fever went away on their own. I told the doctors about the incident a month earlier in Houston, but I was released only two days later before my records from there could arrive.

EVERY 30 DAYS after that (like clockwork), I relapsed, starting with a gradually building headache and fever, becoming most severe by the second day, then fizzling out by the third. With each attack, the fever was always about one degree less, likewise the headaches, though still severe, were never as bad as they were that first day. I never noticed the pattern until it was too late. All I knew was that they always came at the very end of the month. When I had my next attack in late January, my fever was barely above normal and the associated headache was "mild". Then February came and went w/o incident! I was thrilled! I thought "maybe the problem had finally run its course". Of course, I was still associating the pattern with "the end of the month", and, forgetting that February was a sort month, had my next (and last) "attack" in early March.

The last week of March was Easter vacation, which I spent at my Uncle's. Saturday morning, April 2nd (30 days later) 1988, When I awoke, I opened my eyes to discover I had double-vision. I stood up and I weaved as my balance was impaired. I tried to scoop my change off the nightstand with my left hand but couldn't because my fingertips had gone numb. The only way I could see straight was to hold my right eye closed with my hand. There was no fever or headache and I otherwise felt perfectly fine. I told my Aunt that something was wrong and she suggested, "Maybe you're coming down with something. Why don't you sit downstairs in the living room and see if you don't begin to feel better." (I didn't know it, but I was having a stroke.)

As the day wore on, I didn't improve (naturally), the numbness in my fingertips had now spread halfway up my arm to my bicep. By 8pm, still sitting in the living room, holding my right eye closed by hand (it was paralysed and had turned inward towards my nose), I told my Aunt, "It's not getting better. It's only getting worse. You'd better take me to the hospital." They drove me to South Side Hospital in Certral Islip, NY. Ironically, the very same hospital I was born in, and I joked that it seemed much bigger the last time I saw it. :)

The waiting room was rather full and it was a two hour wait before anyone saw me. They had one guy (not even a real doctor, but a resident in green scrubs) taking care of everyone. By now the numbness had spread into my shoulder. When they finally called my name, my Aunt and Uncle had to lift me up by the arms (I was now weak and disoriented) to escort me to the chair next to the front desk.

The "doctor" just looked at me holding my eye closed and asked, "What seems to be the problem?"

"I don't know" I said. "When I woke up this morning, my eyes were crossed, my balance was gone and my fingertips were numb, which is now spreading up my arm."

He glanced at me but didn't do any examination or even ask me why I was holding my eye closed with my hand. Instead, he tapped his pen on his clipboard a few times and said, "Well, tomorrow is Easter and we're going to be shorthanded, so go home and if it gets worse, come back tomorrow."

I figured if he wasn't worried, then I guess I needent be either. It was 11pm by the time we got home and I went straight to bed. On 6am Easter morning, I woke up to discover I was now numb clear down to my foot (which I still am to this day.) I got up, got dressed with some difficulty due to the double-vision and imbalance that hadn't gone away and told my Aunt that it "hadn't" gotten better only "worse" and to take me back to the hospital. I was admitted and given a room, where I didn't see a "real" doctor until the next day.

At that time, 1988 in NY, "Lyme's Disease" was all over the news. "Numbness" was a classic symptom of Lyme, so they immediately began to treat me for it, which meant a steady stream of penicillin delivered by IV 24-hours a day, which wasn't dangerous if that wasn't what I had. I immediately began to tell the doctors about the incident back home in Houston six months earlier, but since I had been in NY the year before that, they opted to believe my illness started there/NY rather than here/Houston. (in retrospect, I'd say the doctors almost seemed gleeful to have "their first real case of Lyme".) The more they told me about Lyme, and the more I replied "No" when asked about symptoms, the more certain I was that I did not have Lyme. I began to insist to my doctors that I did not have the disease and that they look at other possibilities. My complaints went totally ignored. They did send a request for my records from Houston, but they never arrived.

Less than 30 days later with no change (for the better or worse) in my condition, I was transported back home to Hermann Hospital in Houston by "air ambulance" (a small twin-engine plane with a nurse), admitting me to the same hospital I had been in six months before. When I arrived, all they had of my patient history was a small red folder from the hospital in NY stating I was being treated for Lyme. They sent my blood off for some tests to check for Lyme and told me they'd contact me with the results. In thw meantime, my mother's medical insurance company decided that I didn't need to stay in an (expensive) hospital just to be treated for Lyme, so they put me on a portable pump that delivered IV penicillin 24-hours a day and sent me home. (Again I insisted that I didn't have Lyme, but I was ignored. What does a 19 yearold kid know anyway?)

Days after returning home (Early May now. 30 days after the incident in NY), I had a second stroke. I began vomitting violently and was rushed back to the hospital where I was admitted and waited for the results of my blood tests from the week before. Naturally, the test came back negative. I said, "See, I told you I don't have Lyme", but rather than finally believe me, they took me off the IV penicillin and decided to try a different Lyme treatment while sending my blood off to "The Center for Lyme's Disease" in New England. In the meantime, to build my strength back up, I was given Prednisone, 150MG a day. 30 days came and went without incident. (I still was unaware of any pattern.)

Then, one morning (about a week later), the nurse brought my morning medicine sans the Prednisone. I couldn't help but notice the large, nasty tasting horse pills were missing and asked my nurse, "Isn't there a pill missing?" She said, "Oh, that's the Prednisone. Your doctor took you off it because it's not good to be on it for too long." I took my medicine and she left. About two hours later, I began to feel the onset of yet another fever with headache. I quickly buzzed the nurse and told her, "I don't know what you took me off of, but you'd better put me back on it quick!"

The next thing I remember, I was waking up in the CCU (Critical Care Unit) surrounded by my family. Apparently the nurse returned (how much later I do not know) to catch me in the middle of a third stroke. This time, I had lost my voice and the right side of my face was paralyzed. I had a feeding tube up my nose and wires connected to my body.

The tests from New England came back negative for Lyme (of course). I was no longer amused. I was furious, but my paralyzed right vocal cord prevented me from screaming at my doctors. "I TOLD YOU I don't have Lyme!" I repeated incessantly as my voice began to return. They ran some more tests, but after two months in the hospital coming up empty and me now stable taking Prednisone daily, I was transferred to a rehabilitation hospital for the next month. (After that, I underwent corrective surgery to straighten out my crossed eye, providing me with some semblance of normalcy, though still leaving me with double-vision.) I was/am still numb, had to walk with a cane to get around and wear an eye-patch just to see straight. I was a mess.

In the months afterwards, I began to search out different doctors and alternate treatments. A friend of my father's recommended a neurologist that specialized in hard to diagnose cases. He suggested the possibility that the disease had run its course and I was now simply dependant upon the Prednisone. His treatment was to "bounce" me between high and low dosages every other day to eventually ween me off the drug. He managed to ween me down to just 20mg & 7mg when tragedy struck. On a low-dose day, a blood vessile behind my right eye ruptured due to the bouncing pressure, causing me to go blind in that eye... which isn't as bad as it sounds because now I could finally do away with that obtrusive eye patch. :) The doctor concluded that "there must be something else going on" (Duh!) and sent me to see the head of neurology at the big hospital downtown. (The same one I had been in the two times before.) He noted my symptoms, the headaches, the numbness, the mouth ulcers and now the blindness, and started doing some research. A few months later, I had began to experience problems due to the Prednisone (20mg/day), namely, my left hip was wearing out. I had enrolled in a University that was 54 miles from my house, trying to get my life back on track. (108 miles a day, five days a week, driving a car with a clutch, it's amazing my hip lasted nearly a full year before wearing out.) I needed corrective surgery just to walk again. My neurologist added "hip trouble" to my list of symptoms and sent me to see a rheumatologist. Based upon those symptoms, his "best fit" diagnosis was Bechet's. (You can probably understand why I don't agree with that diagnosis: the only ulcers I get everyone in my family gets, but only "I" have Bechets? Never had genital ulcers. The numbness and blindness are both due to a stroke, the worn out hip is due to the Prednisone and driving too much. No one has ever accounted for the "every 30 days" regularity of those initial attacks.)

That was 11 years ago this past April. Even now, I still see that same rheumatologist every six months, and the Prednisone I must take every morning is the only thing standing between me and another stroke. It's taken me over a decade to get my life back in order, and I FINALLY completed my college degree last May after 13 years by age 31.

So, that's my story. I'd be interested in hearing from anyone else that's experienced similar problems and could confirm or provide evidence that I do/don't indeed have Bechet's.

Tom D'Ambrosio