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Advice for a Chronic Persistent Neurological Lyme Sufferer


#1

A brief personal history.

I was born in Southern Westchester (town of Eastchester) in 1980, and my family moved up to New Castle in 1985. I remember in quite vivid detail a very happy existence in southern Westchester, and a sudden cold feeling when house shopping with my parents at the house we would eventually move into on Saddle Ridge Road. Like every 5-year-old boy, I was fascinated with the acre and a half of woods on our property, a subdivided community of houses cut out of old farm. The farm walls that once separated the plots of corn, wheat and livestock were repurposed to divide out the plots of land that we and our neighbors called our own. I spent countless hours in those woods, wading through ponds, small waterfalls and brush; searching through abandoned farm structures, climbing fallen trees, and of course walking along the stacked stone walls.
Another of the many vivid memories from my childhood was of being in my 1st grade class at age 6. There were smaller reading rooms off the main classroom which the students would be assigned to during ‘reading periods’ to practice using our newfound grasp of words. I was a toe-head with a shock of straight blond hair cut into a ‘bowl cut’, the look of the time. I remember sitting in that reading room one day futzing with my hair and came upon a small itchy bump. I scratched at the bump, eventually pulling out a small insect which fell into the book I was reading. Memory is a bit fuzzy here, but I recall being embarrassed, and throwing out the finding.

Flash forward a year and a half, vacationing with the family in Cape Cod as we did many summers. I remember being called into the living room to talk to my parents about having to cut the trip short, because the doctor’s office called and said that I had been diagnosed with Lyme disease. It was the summer of 1987. I had been complaining about a stiff and painful neck and had been developing ever worsening headaches that would come on as a wave of searing pain and deafening whine. I was taken to Westchester Medical Center in Valhalla and seen by Dr. Gary Wormser. I was given 14 days of Amoxicillin, being called back every few days for further blood tests. By the end of the ordeal, I successfully got over my fear of needles… and the stiff neck (with a lot of help of my father’s chiropractor).

Two years later in 1989 I came down with identical symptoms and was treated with another 14 days of amoxicillin at Westchester Medical Center. In neither incident of Lyme was a rash ever present.

In 1991 I was diagnosed with Crohn’s disease after a year of worsening stomach pain. Crohn’s and Colitis runs in the family, so my parents naturally just thought this was an early onset of our unfortunate family heritage, as most develop Crohn’s in their later teens / early 20’s. Much of my teenage years were focused on dealing with the stomach illness. Multiple hospital visits, feeding tubes, a cabinet full of medicine. Nothing seemed to work except, unfortunately, prednisone which nullified the swelling and pain, and unfortunately also stunted my growth. I was way well undersized in my class, but at least I put on weight and could keep food down. Stopping prednisone caused the symptoms to come flooding back into my life. Starting prednisone pushed them down again.

At 16 or 17 in the late 90’s, I saw a story on some broadcast about an amazing miracle drink that was fancied to be a cure-all. People claimed that it cured cancer, other claimed it fixed their acne. I thought, why not? The drink was called Kombucha, and the only distributer we could find was based out of Los Angeles. We had cases shipped cross country and eventually my mother started brewing (fermenting) our own at home. Within a year a grew 3 inches (unprecedented for me) and gained 25 pounds to reach a whopping 5’5” and 125lbs… the healthiest I had felt in years. What wasn’t cured by Kombucha was the depressive mood disorders and anxiety that had developed in my mid to late teenage years and the growing animosity between me and my parents. It was assigned to ‘teenage angst’ and stress having to deal with being a sick child. I was put in behavioral therapy. Thinks got worse before they got better. Paranoid thinking, delusions; I felt I was losing my mind… I was losing my mind. I didn’t trust my friends, my family. Felt that I was isolated, that everyone was against me. I was always exhausted, always on edge… I was panic stricken.

I started college at Temple University in the fall of 1998, and shortly enrolled myself for therapy at the University’s Behavioral Health Center. I was prescribed Paxil, which helped greatly. Clearly, I was just a depressive, I had a mood disorder, maybe some mild personality disorder. I graduated and continued therapy on and off to this very day.I moved to NYC in 2002 and began breaking into the film and television industry, a decision I realized sometime later didn’t really jive with my lack of energy as the average day on set lasts 12-13 hours, often out in the elements. Flash forward to 2008, now fully insured as a member of a Motion Picture Union, I decided to follow up on a feeling that had been nagging at me for a long time. What if Lyme was still somehow responsible for many of my ills? This I guess is when I really entered the realm of the ‘lymelands’. I was referred to an Infectious Disease specialist, a neurologist, an epilepsy specialist, an endocrinologist, a psychiatrist. I was given a 3T MRI of my brain, showing areas of sclerosis. I was given an hours long neuro-psychiatric evaluation which showed various areas of impedance with visual memory and recall. I was administered a 3-day epilepsy study at NYU Langone to determine if I had Epilepsy; hooked up to dozens of wires connected to an EEG. I was given a spinal tap.

The spinal tap is what was proved to be most fruitful in the long run, as the test showed that there were in-fact Lyme antibodies in my Spinal/Brain fluid. The doctor overseeing the study (epilepsy specialist) decided that it was best to continue perusing drugs to rule out epilepsy, regardless of the fact that the EKG detected no sign of seizures. Many drugs were administered, nothing seemed to help. The infectious disease doctor ordered a 5-week course of IV Rocephin, sequentially increasing the dose up to the last week. No further treatment was prescribed thereafter, no major change was detected by me. Disgusted by the whole system, and drained by the co-pays and co-insurance, I walked away from what I felt to be a fruitless hunt and found comfort in Anti-anxiety medicine.

As 2008 came to a close and 2009 began, several disturbing things began happening. At times of high physical or emotional exertion, I would sometimes experience some degree of hallucinations or visual/perceptive abnormalities. I could feel like I was floating on a river, or wading waist deep in water when walking. I had trouble focusing, feeling like I was both 20 feet and 20 inches tall at the same time. Other times during an attempt at strong concentration (like for instance a full immersion Spanish class) I would get stuck in a train of thought, not knowing how to transition out. It’s almost as if I forgot how to speak English. I could, of course, still speak but as I did, it was if I was watching myself from a hidden inside place, like I was a passenger in another person. In both cases, the only thing that reset me back to ‘normal’ was a period of sleep. I eventually again perused treatment for Lyme, this time to an Internist that I found who operated out of a small family practice in Wading River Long Island named Dr. Ruggiero. While not a fully-fledged LLMD, he did treat many many cases of Lyme and was still covered by my insurance. So began my long run of Doxycyclene, 18 months in total at 400mg/day, with a 4-month run of ceftin mixed in the middle. This was also the longest period of relief in my adolescent/adult life. My thoughts became clearer, my mood stabilized, I could focus. I was able to relax and have fun. Sure I turned into a lobster when exposed to sun, but I was legitimately happy. No more arguments with myself, no more noisy thoughts constantly racing through my head. It was determined that I was healthy enough to come off treatment.

The decline was slow, almost un-noticeable. Other health issues kept me distracted from monitoring my returning Lyme syndromes. A slipped disk in the back, a failing relationship, job woes. I remember distinctly a moment in 2011 when brushing my teeth before work. I became distracted and some time had passed before I realized that I was having an imaginary quarrel in my head again. A fabricated scenario where I was arguing with my boss over something or other. This was something that hadn’t happened in quite some time; I think I just wrote it off as being under-slept and over-stressed.

It wasn’t until 2012 that I further pursued treatment for my chronic Lyme. I found a LLMD who naturally did not accept insurance. This doctor saw me for the first appointment and assigned me to one of the RNs in the clinic who prescribed 5 Months of Zithromax, overlapping 10 months of Amoxicillin, and 3 Months of Mepron. A low sugar diet was also prescribed, specifically no simple carbs. While I slimmed down magnificently on the new diet, I guess I expected more of an obvious and immediate improvement in my condition. It was naïve and arrogant, I now understand, but I thought that if I spent the money on what I was told was the Top-Doc for Lyme, an unmitigated eradication of my disease would be imminent. Looking back, improvement was achieved, but I was too impatient and frankly a little skeptical of my condition. Is this just some sort of psychosomatic response to my anxiety? Is Lyme just the mass hysteria that many doctors claim it is? I’ve proven to be susceptible to psychosomatic pain in the past, perhaps this is just a larger manifestation of the same condition? One of the doctor’s RNs detected a small heart murmur with her stethoscope and an EKG machine was brought out. When the receptionist/office manager tried to charge me an extra $800 on top of the normal (very expensive) office visit, I was understandably confused. She told me it was for the EKG, which I tried to argue was not disclosed as being an added procedure. The nurse declined to come out and talk to me about it and the rude office manager stone-walled me. Convinced I was being fleeced, I left the office vowing to not return. The doctor and the nurse staff all knew that I was not a man of great means and that this treatment was financially taxing on me. How could they just bill me for a procedure that I could have had administered by my PCP for a fraction of the out of pocket costs? This was all I needed to solidify my paranoia that Lyme was all just a moneymaking scheme. An over-reaction to be sure. I decided to discontinue my treatment and see if I couldn’t just continue therapy to fix my ills.

Since this last treatment, I’ve had a steady decline in overall well-being. While I luckily don’t have most of the physical symptoms I once did in the way of joint pain (still a bit), my energy level is depleted, my concentration null, mood erratic, mind noisy, stomach a disaster, constantly anxious and paranoid. A general feeling of ‘just not being there’ is ever present, what I guess is referred to by the layperson as brain fog. OCD-like patterns of behavior rule me. I chalked it all up to not being able to handle stress. I’ve been in behavioral therapy for years now, on every type of SSRI, SSNRI available, but nothing really works. At best, it takes the edge off the knife, but I’m still being assaulted. I’ve felt very alone and isolated through all of this, not having even ground to stand on. Many a time I’ve gone back to the Lyme theory, but decided not to open that worm-hole of obsession again, digging through online forums and wading through conflicting theories of conspiracy on both sides of the argument.

A few months ago I came across Pamela Weintraub’s book “Cure Unknown”. The writing was scientific and objective. The research thorough and simply laid out. It was the first time I’ve read about Lyme where I didn’t feel that the author was blinded by their own experiences. It was the first time that I could truly believe my long running suspicions of a chronic infection in myself. Reading the book, I felt as if I had found a path that I long ago lost, and a far of clearing in the woods could again be seen. I felt validation in believing that it wasn’t all my fault, that it wasn’t some manifestation of my subconscious, that I was still in-fact sick.
I guess what I’m here for is to ask the advice of the group, where to go from here?

It seems that the best current course of treatment is pulse dosing either Rocephin or Ceftin. Has anyone had experience with this treatment and what was the outcome?

Any other recommendations for treatment or for practitioners in or around the Northeast? I understand that most established LLMD’s don’t accept insurance, and although I’m not very financially comfortable, I’d find a way to make it work. What gives me pause is a lot of the negative reviews of the top lyme docs. I recognize that a lot of that is noise from Chronic Lyme deniers, but a good deal of it is from real patents that have been given very dismissive treatment at a high premium.

I can really only afford to have one go at this one time, and there’s just so much riding the decision of who to see for treatment.