LifeOnTheIce's Story: Cpn & MS

Submitted by lifeontheice on Sat, 2005-10-15 22:26
My first encounter with MS happened in December, 1987 following an enormous “flu”. The right side of my head went numb, as was my mouth and tongue. There was a questionable tingling on the left side of my body, barely discernible, that even I had doubts. That event coincided with my new job and I ignored it telling myself that it was a Bell’s palsy. The trouble was it looked much more like the fifth cranial nerve palsy and even that seemed to be more extensive than expected. I decided to ignore the whole thing. It resolved in several weeks leaving me with hyperparesthesias of my scalp for the next year or so, and permanent, almost unnoticeable minimal right upper lip atrophy.

      In April 1993, I had a sudden problem with the right eye. Vision became blurry, pinkish, there was aching in the back of the orbit. I could not ignore it this time and paid a visit to my friend the ophthalmologist. She could not see what was wrong and delegated me to a retinologist, who after the myriad of the tests was also at loss. In meantime, my mother, my husband and I, all three physicians, decided that I should take high doses of steroids which I did. We went for vacation to Arizona. I had wonderful adventures there getting swollen like a balloon from the water retention, then going into acute, prerenal failure, to be followed by a very funny diuretic phase. When I came back I had a brain MRI, which showed two lesions, related to both events. The differential diagnosis was: infarcts, migraine, and MS. My eye problem was already going away, I chose to believe it was a migraine, even though I had never had headaches, and I kept working and paying more attention to enjoying my life. Somehow, I felt it might not be long till another disaster strikes.

     The interim was uneventful. Here and there I had transient right facial numbness, or tingling, for which I promptly took aspirin and life went on. My mental faculties were going downhill, my memory was slipping away, but when I asked around about it, the explanation was always the same. I had too much to remember, everybody in my situation would be the same. I became a bore.  Something very weird happened. My life became surreal. I was not participating in it any more. I was a bystander. Nothing truly bothered me; nothing made me mad, excited, or even sad. I became apathetic, still able to smile.

      In August 2002, I started having continuous right facial numbness extending to the neck and scalp. I became tired and slept after work. I started steroids again. The results were not satisfying and for the first time in my life I decided to see a neurologist. By the time I went for the appointment in mid September, I was quite ataxic on the left side, had problems with balance, could not walk strait and stumbled often.  The doctor was not alarmed, told me that it was MS and ordered an MRI of the spine and the brain, MRA of the neck and the head, for the middle of November.

      I kept getting worse. I could not feel the extent of the left side of my body any more. I had multiple minor injuries trying to enter the car, any unplanned movement could send me down to the ground, and the stairs became a real challenge. I became unbearably fatigued, yet I would wake up every hour of the night scared to death, because I was a half-body creature. I lost the ability to think, read and concentrate. I had no memory. I was losing important things. I forgot my beeper number and the answering service number, the locker combination in the hospital. My written words were missing letters, my handwriting became sloppy. I did not remember words, names, dates. I forgot about the patients I had to discharge home, I did not know the day of the week any longer. I became disoriented in familiar surroundings. Despair. To top it all at the beginning of the November I became so stiff I had great difficulty to turn around the corner.

      I was very stiff for two days. The first day (Sunday) I somehow managed to do my hospital rounds. My elderly patient was very ill, and I did not feel any better. When I was leaving, a security guard approached me: “Madame, are you alright?’’ “Yes, I am. Thank you.” The next day I went to the office, as always. It was the worst work day (seven hours) in my life. I barely could make it from room to room without hitting the walls. Things were falling out of my hands, the patients were helping me pick them up, and they helped me with the dates on the prescriptions. I felt enormously tired and miserable wondering how many of them suspected that I was drunk or on drugs. I had to attend the delivery that evening, but instead of going directly to the hospital, I went home and swallowed 120 mg of methylprednisolone. I caught the baby on time.

      The next day I went to see the neurologist, got the prescription for steroids, and my appointment for the MRI was bumped up. First I had the spine and MRA done, waited 30 min for the copies, checked them: normal. Good for me! The next day I was given copies of the MRI of the brain and asked to wait while my neurologist was contacted. I quickly examined the copies and I almost had a heart attack in the waiting room. Horror petrified me. At least one-third of the brain was included in solid demyelinization, not to count the scattered lesions all around. And there was a brain edema as well. All, I was naively prepared for, was the third lesion in the cerebellum.

     I was admitted to the hospital an hour later, my good friend, the cardiologist, acting as an attending. It was a beneficial arrangement. He discovered that my cholesterol was 274 and proved that at least my heart was in top shape. I was given an IV decadron, while a whole group of the neurologists argued with the radiologist, if I had a brain tumor, or encephalitis.  I had a neurosurgeon and an infectious disease specialist on consultation. Thanks to the brain edema I escaped a brain biopsy and a lumbar puncture. Both procedures when done while the brain is swollen carry the risk of the herniation and death. I was so confused, and in shock, I would have agreed at that time even to have my head amputated. All tests for encephalitis came back negative, and given my long neurological history, the diagnosis of MS was accepted. I was discharged home and had to follow up with my neurologist in 3 days.

      I came home as an altered woman. I became deeply depressed. All I knew was my name and that a great injustice happened to me. There was no way out. I was unable to accept my future, same time I could not do anything to change it.

      I became a house idiot. I was treated like a spoiled child. My family did not know what to do with me. They were scared preparing themselves for the worst, at the same time trying to convince me that people without marbles still can enjoy their existence. My husband cooked and served, as always.

      My husband and I went to my appointment. The neurologist was an MS specialist known to both of us. We send most of our patients to him and like him very much. He was very sympathetic. I swear I could see tears in his eyes. His decision was, however, to refer me to a university professor, his old teacher, the real MS specialist. In the meantime I was to finish the steroids. I had gotten a book about MS from him as well.

      The appointment was made with the professor for late January. We made another appointment with his close co-worker for December 9th, also at the university. At that time I already was thinking about Lipitor. There was information about how well laboratory mice with experimental autoimmune encephalitis fared on it. The dose was 100 mg per kg. I decided for 80 mg a day. I went to see my friend who was badly affected by MS and not responding to anything. We talked a little about our plight and I wrote him a one-year prescription for Lipitor 80 mg as well. We started taking it on November 29th.

      In December I went to the university, my MRI was publicly admired by a bunch of the residents and the specialist; I was examined and sent for the VEP while they were looking for someone to perform a lumbar puncture on me. The person was not found and I was advised to call after the Christmas. When my husband asked what to do in the meantime we were assured that nothing would happen.

      About one week later when I was driving to work I realized that a big pot my head had been squeezed into was gone. I felt different, free. From that time I started improving very slowly. By the end of January I had no neurological symptoms, except for occasional stumbling and painful cramps in my left leg. The cramps disappeared completely after taking 200 mg of vitamin B1 for two days (my mother’s advice).  For the first time I took an interest in supplements.

      My MRI of the brain was done on February 28th. The impression was: a marked decrease of swelling and enhancement noted throughout multiple white matter lesions within the cerebral hemispheres, cerebellum and brain stem. There was no associated mass effect or edema related to these lesions. There was only subtle enhancement seen within several of them.

      In March I had the opportunity to participate in a lecture about new treatments in MS given by the above mentioned professor in our hospital. I was the only one with MS, the rest of them were neurologists and neurology residents. I was taken aback by his contemptuous attitude towards MS people’s intellect. As damaged as I was at that time I felt offended and very glad that I never became his patient.

      In May, I came upon the MS-Direct diet and recommended supplements. It became a part of my life since that moment.

      In August I had another MRI and at that time there were no active or new lesions in my brain. I paid a visit my neurologist friend to brag about it. On the way back I got lost in my car quite close to my home.

      I think my depression began to ease a little in May, 2003. The first sign I noticed was my appearance in the laundry room. Till May I did literarily nothing. I did not see any reason to do physical work. My presence in the world was inessential. I had no meaning. My life was counterfeit. I existed through my work and my patients’ problems. I felt like an impostor and often thought how easy it was to deceive others. At the same time, I had greater understanding of misery and tried to get to the bottom of suffering. I became a master in solace.

       At the end of June my whole family went to Spain for two weeks. We had really a good time there. My physical endurance was the same as others. I became the designated driver and lead them through the most treacherous mountain roads. My self-esteem improved markedly and I became well- disposed to my life.

       That summer I joined a few different MS forums and tried to spread information about statins. I had no luck. No one believed me. The general consent was that I was trying to undermine the blissful state of MS therapy, jeopardize sick people's health by recommending poison, and if I was better the reason was solely due to me being in remission. I hung around, but did not post much.

       In the meantime my memory was improving slowly. I still had to be on guard during conversations and heavily rely on my notes in my practice. I began reading books again.

       In November we went on vacation to the Dominican Republic. This vacation was paid one year earlier, but I ended up in the hospital that week. As unbelievable as it sounds I never stopped working. I was back to work one week later.

        In April, 2004 I came upon Sarah’s report about the antibiotic therapy. Our stories were so alike. The final result of our treatments was the same. Dr.Wheldon’s regimen offered a potential cure. My therapy would have to be carried out ad infinitum. I decided to take a risk. I scheduled another MRI of the brain to have a reference point and ordered Roxithromycin via the Internet.

       My MRI was unchanged since April, 2003 which was a positive finding. While waiting for Roxithromycin I decided to try the LDN. The very next day after the first dose it appeared as if a heavy load was lifted from my shoulders. It was unbelievable. I felt like a teenager. All that time I considered myself physically in top shape.

       In June I stopped Lipitor, started the antibiotics, continued with the LDN and went to London with my daughter for a ten-day vacation. Aside from the unexpectedly cold weather we enjoyed our time there immensely until I added Metronidazole to Roxithromycin and Doxycycline. After about two days on Flagyl I started having tingling in my face and the left thigh. I finished it, however. I returned unhappy to the USA. I promptly restarted Lipitor and decided that the antibiotics were not for me.

      About two months later I realized that my cognitive abilities exploded. The only logical explanation was that wretched Flagyl. So I attempted another course of the antibiotics in October. Same reaction happened again. I returned to Lipitor and was quite pleased when all neurological symptoms were gone.

      In December, 2004 I joined another MS board which was much more fun for me. After a short while I met someone there who was taking the antibiotics for presumed and early MS. That person explained to me that the recurrence of  the MS symptoms, following the antibiotics was a Herxheimer phenomenon. Till that time I believed the “die off” signs were chills, fever, headache and myalgia.

     I stopped Lipitor again and began to take antibiotics on February 4th, 2005. I remain on the LDN. My regimen is Doxycycline200 mg and Roxithromycin 300 mg daily. Every three weeks I add a five-day pulse of Metronidazole 500 mg two or three times daily, depending how my stomach feels. I had no ill reaction to Flagyl, aside from a one time episode of feverishness with the second pulse.

      It has been seven and a half months since the institution of my therapy. So far the course has been uneventful. I am normal, not tired, or sleepy. I work my usual hours. I feel increasingly confident with my memory. I hope to eradicate Chlamydia pneumoniae from my body.

      Recently I experienced something that was gone for a very long time. I felt like my old self.

      In February 2006 I will have an MRI of the brain to see if it has improved. Since I'm on my own, and my only experience with the neurologist, was essntially during my hospitalization, I'm not sure whether I qualify as RRMS or SPMS. I assume that if it wasn't for my intervention, I would have the latter.