By: Robie Darche Wiesner
It is 3 a.m. I am nervous, shaky, freaked out as I sit at my computer thinking about h. pylori. The computer said h. pylori can sometimes cause stomach cancer. That scared me. I decided to have the pylori treated naturally rather than with antibiotics, the conventional treatment. The last time I had had an antibiotic was when I had my dental implants put in, four at one time. I was sick for days. “I’ll go natural,” I told my nutritionist as I sat across from her at her desk. Then, “I’m nervous though, maybe natural is too risky,” I said, worried, sweaty, swallowing hard. “Take the antibiotic,” she said, “you have to feel safe.” Relieved, I called my partner. The pylori was resolved but after that my health started to go downhill.
If not stomach cancer, what can these symptoms be. The most terrifying of all was ALS and I had so many symptoms, starting with the weakness in my left leg. The muscle seemed to be slowly shrinking. In fact, my left leg was looking much thinner than my right. When I went to a neurologist he said he couldn’t see anything to indicate ALS. I went to Pain Quotidien to celebrate even though I didn’t quite believe him and ate two quinoa scones and went home and vomited. Maybe stomach cancer. My mind was full of possibilities, all of them horrible. So began my journey to a lyme diagnosis.
I had always been afraid of disease. There were several times in my life that I thought I had a life threatening illness. I saw yellow in my eyes and thought liver cancer. “Sometimes the liver acts that way.” my doctor assured me. Every time I went for a mammography, “just routine,” I’d say and to give myself more solace, “what is is.” Then the time my breast doctor told me they found a nodule or something. “Come back in six months,” he said, and I didn’t stop thinking about that nodule every day for six months. In April when the time was up I sat with another woman who was there for a six month checkup like me. “The doomed,” I said to myself and sat there anxiously.
The fear of death rose to a crescendo when one day while crossing the street I experienced double vision. Even after two MRI’s, several examinations, and no indication of a tumor, I still had my doubts. My neighbor, who was also a social worker, yoga instructor, massage therapist, and generally empathetic person showed up at my apartment door with her massage table. After the massage we headed for the beauty parlor where, to my dismay, she whispered to our beautician, “She thinks she’s going to die.” While working on my hair, the beautician, in an effort to console me, told me the story of her nephew who had a mysterious illness. Far from consolation, her story only confirmed my own fears and I never went back to that beauty parlor again.
During this period I headed for the Anxiety Control Center after work each day and under the guidance of a hypnotherapist attempted to get my anxiety under control.
One summer I registered for the New York City Writing Project at Lehman College in the Bronx. There I met Nat, an old colleague from The Labor College where we both were adjuncts. One day, in the middle of our 6 week course Nat died of a heart attack. Ironically, he had been writing about his father, who wore his Phi Beta Kappa key clasped proudly to his lapel and died of a heart attack still in his thirties. I went to Nat’s funeral with mutual friends of ours. As we drove to the funeral, I began to feel an odd sensation in my feet, a tingling of sorts, which left me a bit uneasy.
After the funeral, our friends, Deena and Allan, invited my husband and me to The Colony in Peekskill where they had a bungalow and we had had one years ago. People surrounded us with greetings as we entered the pool area through the gate in the chain-linked fence. An old friend, whose birthday was a few weeks after mine reminisced about her fiftieth, how she had to be taken to dinner every night for weeks afterwards. “It’s weird,” she assured me. Then, “you know Mariel died.” Mariel was an old friend of hers, a beautiful, caring person, someone I admired.
By the next day, the tingling no longer confined itself to my legs but had begun to travel through my arms as well. Sometimes it stopped, though, and was replaced by a tightening sensation. As it happened, I had an appointment with my gynecologist that day for my annual pap test. When I sat across from the doctor at her desk in the outer office, I heard myself mumble, “The people died.” I followed this statement with a clarifying, “My friends died and I didn’t.”
Sometime later as I sat around the pool in our building I became aware of another sensation. It was as if there was an invisible partition between me and those around me, as if I was viewing the world from some faraway place. My fear had taken hold and it wasn’t until months later after therapies of all kinds that I began to feel whole again. It was several years later that I had begun to wake up in a panic at 3 a.m., worried about h. pylori.
In this year, the year of pre-diagnosis, I started to lose a lot of weight. Once a proud member of weight watchers, at one point in my three year ordeal, I weighed 87 pounds and only started to gain weight again in the third year of my illness. Friends who hadn’t seen me for some months were shocked at my appearance. My doctor had me tested for every cancer imaginable (what else could it be). Finally he said that’s just how you are and you should eat frequent small meals. Then Carolyn and I were sitting in a movie and suddenly I felt tingling in my feet. I was admitted to Lenox Hill Hospital and they found nothing. “Maybe you should have the tingling checked further,” Carolyn said. If only I had. I was told I had beautiful lungs by one doctor. I persuaded a gastroenterologist to give me a second colonoscopy after the first showed absolutely nothing. I was terrified of cancer. My chiropractor tried to hide her surprise when she saw how thin I’d gotten.
Someone in my weekly LGBT group said to me, “you’ve looked sick for a long time.” She was right, but I didn’t want to think that. Even though I was losing weight all my tests came out negative. (Could the tests be wrong?) Anyway, I never went back to that group.
In my drama therapy group a strange thing started to happen. When we stood as a group, I noticed I couldn’t stand for long. I had to sit down. Also, I acted out my cancer fear, but shortly, I dropped out of this group also. In my yoga class, I had a hard time doing poses I never had trouble with. I was definitely losing my grip.
Soon afterwards I went to visit my son in California. When we were in Dolores Park in San Francisco, I had to make a mad dash for the bathroom. There, in the antiseptic stall surrounded by Californians I had a giant load of diarrhea and had to dispose of my underclothes. I called my doctor. He said not to worry and I left for NY earlier than planned. Standing in front of the hotel with my son before I left, I just didn’t feel well and was crying. “Why are you crying?” he asked.
Once during an acupuncture session, the needle began to hurt. It had never hurt before. I yelled for the acupuncturist. She removed the needles and ended the session. But my body wasn’t finished. I was shaking when I got out of the cab and a woman on the street saw me and offered to walk me home. Instead of going home, we went to the medical supply store on the corner and bought a cane.
Long before all this started I had met Carolyn at the women’s group at sage (advocacy and services for older LGBTs). I remember seeing her as she walked into the circle. She was beautiful I thought. White hair, high cheek bones, blue eyes. After the meeting several of us went to a local coffee house. There she was sitting with Jessica. I thought how lucky Jessica was to be sitting and talking to her.
Then the miraculous happened. She was part of the political group I joined. I remember standing with her at the glass window at Argo, a coffee shop, after the meeting. She asked me if I was always busy on Sunday afternoons and the next Sunday we were off to see a film. We loved the same films. Her face intrigued me.
The next week I gave her a copy of the novel I wrote and she gave me her poetry. I was always nervous when we were together. I didn’t say much but she loved my book. We went to movies, restaurants, and museums. We went to Mexico to visit my son and his partner and new baby. Then we went to the island that I love, Fire Island and I think that is where I got sick. I didn’t realize at the time that the deer on the island carry ticks. I assume I was bitten but I never had the circular rash or visible tick referred to with a lyme diagnosis. At the time I had hardly heard about lyme. My brother and a friend had gotten it but they had acute lyme, which is relatively easy to treat with antibiotics. Fire Island was one of my favorite places in the world. It is where I’d met Raymond years before. We had lots of fun in the sun and surf and were inseparable for a while. It was only years after our time together that Raymond killed himself because he couldn’t reconcile his gayness. It is sad to me, and ironic, that his death and my illness should be associated with a place I loved so much.
NEW IMPLANTS PART III
Around the time of my pre-diagnosis I was on a beautification campaign and decided to splurge ($20,000) on implants. First my dentist removed all my upper teeth. Then I selected an orthodontist to do the implanting. I selected someone who, unfortunately for me, turned out to be a sadist. Who else would do in one session what usually takes months. At the time I didn’t realize how extreme this doctor’s method was but I was in the chair and just endured it. It is my contention that this was a trauma to the body which may have brought out the lyme bacteria. The orthodontist prescribed an antibiotic which gave me nothing but pain and I never recovered fully from the implant procedure. Then someone in my drama group said she had an implant removed because she was allergic to metal. “That’s it,” I thought. “That’s what’s causing my problems. That must be the answer. “I just have to have them removed.”
One doctor I went to said it was an ardous procedure and didn’t want to do it. The woman in my drama group had hers removed by a Belgian doctor, who, unlike his American counterpart, had a machine that made it very easy to removed implants. He easily removed all those implants that were the cause of my pain or so I thought. “Now I can finally get better.” I hugged the doctor and went home quite elated but the hitch was that I didn’t get better, which left me very puzzled.
DIAGNOSIS Part IV
Finally, a neurologist who diagnosed me for arthritis (in the hip) sent me to Cornell Weill. There they took blood samples and told me to return one week later.
So a week later there I was surrounded by others who I presumed were there for the same purpose as I. Before long a door opened unto a mezzanine and a doctor entered. There was a sudden stillness. The doctor held in his hand a stack of cards and broke the silence by reading from the cards. Each one contained a name and a diagnosis. He pronounced the name followed by a diagnosis and the words, “and you have a curable disease.” He wasn’t going to say, “and you have an incurable disease.” That wouldn’t go over too well. I came to attention when I heard, “Robie Wiesner. That’s me,” I thought and from the balcony. “You have lyme, a curable disease.” I breathed a sigh of relief that at least my disease was curable even though I expected to hear nothing else. I was given a prescription by an aide on the floor and immediately called my doctor. “Should I fill the prescription?”
“Instead of doing that just come right over.”
This, of course, was the finale after numerous specialists and cancer tests and being told I just had IBS. I was very thin (I’d already lost about 25 lbs) and exhausted and I had no idea how serious chronic lyme was. The doctor read the blood test I handed him. “You have lyme, all right. In spades.” Then he introduced me to the lyme expert he had just hired. After disappearing into an office with my test, the expert reappeared with a rigorous program of antibiotics for me. When it came to antibiotics all I could think of was the antibiotics I took after implant surgery and how sick I felt. I told the expert how sick I’d gotten and asked if there was an alternative therapy. “There are herbal protocols,” she said. “Why don’t you go home and think about it.
By this time I was using a walker as I had severe peripheral neuropathy and stumbled about thinking herbs or antibiotics. This was not a case of acute lyme where the disease disappears after sufficient antibiotics. No, I had chronic lyme, which the CDC does not recognize, but which I had nevertheless. It became chronic because it wasn’t diagnosed for over a year.
I decided to go the herbal route and to that end I bought books. After reading THE LYME SOLUTION by Dr. Darin Ingels, UNLOCKING LYME by Dr. Rawls, HEALING LYME by Stephen Buhner, a world renowned herbalist, Byron White and many others, I began the Cowden Protocol.
Things seemed to be going well. I took my herbs, and had the herx reactions (die-off) which were part of the treatment. I joined a gym, went swimming (for the neuropathy), then to the sauna and herxed there too. It seems that lyme bacteria don’t like the heat. Also to kill the bacteria I got ozone infusions.
One day after getting an ozone infusion at Corrine’s (my nutritionist, physician’s assistant), I came home on my walker. That night I woke up in the middle of the night as always but miraculously I could walk. I walked into Carolyn’s room declaring, “I can walk.” The next day I saw Dr. Bill at Corrine’s and declared, “I’m walking,” and he was very pleased. But it was short lived.
By the time my son came to visit me with his partner and infant son, I was back on my walker. He was upset that I couldn’t walk but I could still do other things–that would soon change. I could still eat without being full after a few bites, I could sit in a chair without feeling discomfort from the bloat, which I didn’t have then. Those were the days.
A month or two after Eric and family left, my younger son and one of his children arrived for a visit. But something happened to me. I began to have terrible nerve pain. I was in bed for his visit and in pain. It was as if the spirocetes were cascading afresh. I had been getting better then bang, this happened. I continued taking herbs but my confidence had been shaken and in my confused and sorry state I was offered unsolicited advise from all quarters. My sons begged me to take antibiotics. Carolyn and Corrine favored the more natural route. One cousin told me someone in her town died of lyme because she didn’t take antibiotics. A friend said, “take antibiotics, they kill everything.” Another relative, “Whatever you do, don’t let them give you antibiotics.” My friend’s son was diagnosed with lyme l2 years ago and was still on antibiotics. I had gastro problems already but I couldn’t imagine the condition of my microbiome if I went full throttle on antibiotics.
One day at Corrine’s I met another infusion patient who had recovered from lyme, probably acute, but back then I didn’t realize the stark divide between acute and chronic. She told me about the Morrison Center, an integrative wellness center, where she had been treated for lyme and recovered. The treatment I received at Morrison was much like the infusions I was already getting at Corrine’s, ozone, amino acids, and vitamin infusions, except for the shots of peptides, which did help my stomach pain.
At the same time I was going to Corrine’s and the Morrison Center, I tried the Zhang Clinic. Dr. Zang treated lyme with a plethora of Chinese herbs and had the same reaction as Dr. Beer, my primary, after reading my blood test. “You have lyme all right, in spades,” he said. After making out my check for $600, I left the clinic with an armful of herbs for the first month of treatment. Unfortunately, I could not tolerate Dr. Zang’s treatment and retreated back to the Cowden protocol. I did, however, take advantage of the acupuncture treatments administered by Dr. Zhang’s assistant. To my dismay the bills were mounting but I was certain my money would hold out. I had no idea how long and expensive this ordeal would be.
After a few months I was disillusioned with the herbs and went to Dr. Beer who was ready to pulse antibiotics once or twice a week. I was on the verge of agreeing when I asked him if the antibiotics would affect my stomach. He said that they would and that was the end of that.
Confused as I was I was still listening to the crowd in favor of conventional treatment and in my desperation, I called Dr. Beer again. He gave me a referral to an infectious disease doctor whom I, in turn, went to see. I had told Corrine I had to decide between herbs or antibiotics. “Well, what did you decide,” she asked. “The antibiotics,” I said. Apparently she knew my infectious disease doctor and told me about his lyme cure for his wife. He had given her a year’s worth of antibiotics and when that didn’t work, he gave her another year’s worth. “He cured her,” she said, “but at what price.” This got me thinking but I plowed ahead with the antibiotics.
The doctor told me to eat lots. “Can I eat sugar?” I asked. “Of course,” he said but from everything I had read and been told, sugar was the enemy of lyme patients and everyone else for that matter. However, I went ahead and told family & friends I was on antibiotics. “He gave you the big guns,” my friend, a nurse, said and sometime afterwards told me the story of a lymie she knew who committed suicide because she couldn’t take it anymore.
I continued on the antibiotics for about a month, but the oppositional forces were still at work. Corrine told me about a doctor friend of hers in Florida. Some years ago his wife had contracted a weird disease that baffled the medical establishment. That disease turned out to be lyme and the doctor, whose specialty was infectious disease, cured his wife. “She now had no signs of lyme,” Corrine told me. “Well, I’ll think about it,” I said. “But it’s not cheap,” she warned me.
I was now more confused than ever. It would have been so easy if I had a disease for which there was a cure. The most baffling thing about chronic lyme, however, is that there is no prescribed cure. Lyme isn’t called “the great imitator” for nothing. It can strike anywhere in the body and can be mistaken for a myriad of diseases. Rheumatoid arthritis and mental illness are the big ones but there are a host of others.
Instead of satisfying myself and choosing what I believed was the right path, I was feeling apologetic, guilty, and above all, utterly vulnerable. Everyone except me seemed to know what was best for me and I was being lead unwittingly by my unconscious. All my fears of death and sickness were rising to the surface and I began to feel doomed.
I had begun the antibiotics prescribed by the infectious disease doctor but I was still not convinced, especially with Carolyn going on constantly about the Florida protocol. “Just try it for 6 weeks,” she would say and I would be thrown into turmoil once again. Then, rather impulsively, “I’ll go,” I said and that was that.
Of course, there were a thousand details to attend to before we left. Someone to care for the cat and the mail. Plane and hotel reservations. I don’t know what I was feeling. I certainly didn’t feel I was on my way to getting better. Instead I felt the end was near. My obsession with death was overcoming me and I brought along my favorite novel, Thomas Mann’s MAGIC MOUNTAIN which only intensified my morbid state of mind. Besides all of this, I was nervous. It was February, the height of costs for rooms in Florida and the clinic itself was very costly. Of course, chronic lyme is not called a rich man’s disease for nothing.
Carolyn and I left in the middle of the night without anyone knowing. The night, the secrecy all made it seem a little surreal.
We arrived in Florida sometime near dawn and headed immediately for the nearest restaurant. Little did I know that my apetite would shrink considerably in the months to come. We arrived at the hotel as the sun was coming up and I attended to the burn on my hands, the result of a heating pad exploding in the microwave weeks before. We rose early to make my appointment with the doctor. He was very upbeat and when I asked him if the treatment would recharge my ability to walk, he assured me it would. This was February. “Well,” he said, “we have until October.” I knew we didn’t because I would be broke by then.
From the doctor’s office we were sent to Mary Beth’s cubicle. In true southern tradition all the women seemed to have double names. Mary Beth discussed nutrition and passed along her smoothie recipe which kept me alive during my stay. Then she gave me a bag for the very comprehensive stool test which was the next step in the protocol. A blank diary was stuffed into the bag as well. “Well,” I thought to myself, “at least this protocol won’t be painful.” Boy was I wrong.
I didn’t understand why I was doing certain things. I didn’t know what a PICC was. Nevertheless, I made an appointment to have one installed in my arm. The stool test lasted six days. I was instructed to make an appointment with the biological dentist in town as I might need a cavitation. I had arranged to stay at the clinic for six weeks. The average stay was three or more months, especially with difficult cases like mine. In order to accommodate my six week stay, the doctor ordered my infusions of colloidal silver, a bacterial killing agent, to begin immediately. He usually began silver after several weeks of other infusions to build the immune system. The others at the clinic were abuzz when they got wind of my colloidal silver status.
Meanwhile the drama of our whereabouts continued with Carolyn, a true believer, saying that six weeks from now I would surprise everyone and return home without needing my walker. Of course, I wasn’t so sure. I also wasn’t so sure that our imposed secrecy was a good idea, most especially when it came to my sons. Thinking I was convalescing at home, on my birthday they sent flowers to my apartment in Manhattan. Afterwards I couldn’t picture those flowers at my door without a reminder of my betrayal and a tug at my heart.
Toward the end of my stay at the clinic, I got a phone call from a cousin inviting me to her daughter’s wedding. She had no idea I was sick and was very surprised at my news. When I told her I was at a Lyme clinic in Florida, all she could muster was a little screech at the other end of the phone. She was further discombobulated by my laundry list of symptoms: arthritic hip, nerve pain, severe neuropathy, gastro upset, and severe weight loss. I then told her about some of the treatments at the clinic, most of which, like ozone therapy, colloidal silver, pemf, and howcatt she had never heard of. I tried to allay her fears by mentioning rocephin, a powerful antibiotic given at the end of treatment. At the end of the call, I told her I was sorry I couldn’t attend the wedding (which I was) and she wished me luck with my treatment.
The next night, however, I got another phone call. This time it was from the husband of last night’s caller and two other well-meaning relatives. The three of them had selected one spokesperson. When I told her I weighed 102 pounds, she pointed out to me that it could be 102 healthy pounds, which it clearly was not. I felt I was being scolded as she continued: “I want you to get on a plane right now,” she said as if I was a disobedient child. For one thing, it was completely unrealistic for me to get on a plane in my condition. For another I was in the middle of treatment they knew nothing about but had completely discounted. My immediate reaction to their call was guilt when another reaction would have clearly been more appropriate.
The infusion room was filled with lyme and cancer patients. One patient, though, in a wheelchair appeared to be paralyzed and spoke in a way which was comprehensible only to her mother. She did communicate by doing a lot of pointing and one day she pointed at my thermos. She wanted one just like mine her mother told me. Another day she even smiled. Priests came to pray over her and her brother was there to help also but I never knew what her affliction was.
Tommy was a veteran with chronic lyme. He was treated at the VA with 4 weeks of antibiotics, the CDC recommendation for lyme since chronic lyme doesn’t exist in CDC world. He could barely walk as his legs were very stiff. He had been a sportsman he told me, always on the water. After the VA hospital, a friend hooked him up with a rife machine. He didn’t know how to use it and suffered tremendous die-off, although eventually, he bought one for his home. He and I were among the older lymies. He was a good sport and would sit in the transfusion room and draw. However, he did tell me that he told his daughter he was going to exit this world a little early if he couldn’t beat this thing. After experimenting with the rife machine he came to the clinic, which was right around the block from his home.
Phil had had lyme for about 7 years. Walking is difficult for some lyme patients and Phil, who called himself “dead man walking,” walked with a stick. Of course, I was using a walker as I had severe neuropathy and an arthritic hip. Phil came to the clinic only sporadically and eventually was squeezed out because of insufficient funds. Somehow I always chose to sit next to Tommy or Phil.
The howcatt is a one-person ozone sauna. It is enclosed so only your head is out of the machine. The rest of you is engulfed in heat and ozone. Each howcatt session is about 30 minutes. It refreshes and oxygenates the body and was a great favorite at the clinic.
I met Jane at the howcatt. She was in one and I was in the other (there were two at the clinic). It was as if only our heads were talking as our bodies were submerged. “It is nice and toasty in here,” she said. We seemed like two detached heads chatting away. Jane was from Ohio where the medical establishment believes there is no lyme but here she was, a lymie from Ohio. Jane had been at the clinic for about 4 months and was looking forward to going home. She had transmitted her lyme to her baby in vitro and she was looking forward to treating her daughter’s lyme with Buhner’s herbal protocol. She told me her friend had been on long-term antibiotics and now had no stomach left. Jane came to the clinic using a walker but now was experimenting with the skate board she bought for her daughter and went back to Ohio “lyme free.”
Linda was born with lyme. She had been on Flagyl for seven months with no result except temporary blindness before she came to the clinic. She told me her cousins in the Carolinas were diagnosed with multiple sclerosis but she had a suspicion they had lyme. Linda also left the clinic a happy woman. She was “lyme free.”
Then there was the Australian who came to the clinic because like Ohio the Australian medical establishment didn’t believe there was any lyme there. He could only stay for three months, he said, as the overall expense was out of sight. Unfortunately for him his body didn’t take to the PICC and he ended up in the hospital as a result. This shortened his precious time at the clinic. As of the time I left, the Australian was planning his return home. When someone suggested he come back for more treatment, he politely reminded them of the distance he had traveled and the expense he’d incurred.
There was this young man (in his forties I’d guess) who rode around on a motorized scooter and didn’t seem very sick. When I asked him about his lyme, he said he’d had it for about 12 years but it wasn’t very serious. He never got it internally, he said. Anyway he told me he came to the clinic because he knew a young girl, a teenager, who’d been sick with lyme for about 5 years. She was bound to a wheelchair and her head was always drooping, never upright. Her mother cared for her for all that time until finally
in desperation, she sent her daughter to the clinic and, miraculously within a few months, she was cured. That’s when he decided to go to the clinic.
There was a collegial feeling among the lyme patients. One woman I met who’d come to the clinic after some months at the other famous one nearby said that after transferring here, she finally felt as if she was getting better. She complained about the other saying she had to wait a long time before being treated, that the money had to keep coming despite her wait and there was always someone in the wings willing to pay the clinic off to be moved up the line. They’d give $45,000.00 or more she said. After our conversation, she invited Carolyn and I to stay with her at her apartment if we returned to the clinic in summer. She also gave us the name of her boyfriend in NY who demolded apartments after warning us of the dangers of lyme and mold and the lucrative business that mold removal had become. Tommy, who was planning to buy a rife machine and whose house was walking distance from the clinic, also invited us to stay at his home if we returned to Florida.
Just before my three months were up, I was told that the doctor had suggested I go on the l7 day protocol he developed for the more recalcitrant cases. The treatment consisted of the usual infusions of vitamins and glutathione, collodial silver, the anti-bacterial agent, and at the end of the protocol a healthy infusion of rocephin, the antibiotic targeted especially for neurological lyme. On the weekends, I was to take the silver orally. Frankly, I didn’t know if I was going to make it. The die-off was excruciating. I had pain all over as my body couldn’t excrete the die-off fast enough.
I just wanted to go home. Aside from all the pain I experienced I was worried about money as the expense of this excursion was, as the Australian put it, “out of sight.” I had my departure date, May 14.
Before my departure, however, the doctor suggested that I do a second 17 day experience as I wasn’t progressing as hoped for. Of course, there was no way I was going to go through that again and, besides, I couldn’t afford it. I just wanted to go home.
I made plane reservations and goodbye Florida. Once in my apartment, the dust was overwhelming. It didn’t exactly feel like home. During the first night of this long awaited return I had terrible nerve pains and called 911. There I was on my first night home being wheeled off to the emergency room. I was praying we didn’t pass any of my neighbors, but we did.
My son was supposed to meet me when I returned as he was going to be in Manhattan on business. Instead of going to my apartment, he came to the emergency room at my request where I dissolved in tears. They gave me some morphine at the emergency room and released me.
Carolyn was so associated with my lyme experience that I just wanted to get away from her. I’d had enough of the woman I was so drawn to a few years before. I called my former cleaning person who recommended a friend to be my aide. I was all set. My first appointment was with the neurologist at Weill Cornell Hospital who first diagnosed me. I had to undergo a nerve exam in which the technician placed what felt like electric prongs in various parts of my body. I also had an MRI of the brain. Finally, the doctor recommended immunoglobulin for my neuropathy. Apparently, my brain was still intact. I’d heard a lot about IVIG and I was hoping it would do the job for my neuropathy and, miraculously, it did. Dr. Latov started me off on three consecutive days of IVIG in addition to prescribing a month of an antibiotic. The first night I had terrible nerve pain again but I continued the protocol. Then, sometime during that first month a miracle occurred.
I went into remission. Eating had been such a problem before but now I could eat and I went crazy. Chinese food every night from my favorite restaurant. Carolyn came to my apartment to get some of her things and I was in love again. We indulged in one of our favorite past times, film. I simply parked my walker somewhere in front of the screen, and I was free for the first time in l.5 years. My daughter-in-law’s parents were in NY and we took them to the Chinese restaurant. Carolyn and I indulged and went to Souen, the macrobiotic restaurant downtown. My daughter-in-law was coming to town and I wanted to take her to El Quijote, her favorite restaurant. My month of antibiotics was almost up and when I went back to the hospital for more IVIG, I told the doctor that I wanted Rocephin, the internal antibiotic for lyme neurbosis. So many people had been talking about antibiotics I wanted to prove that I had taken them. Unfortunately, that brought my miracle to an end. I couldn’t tolerate the Rocephin for more than two sessions and told the doctor to discontinue it. Still expecting to be able to eat, I was in for a big surprise. I was done. If only I hadn’t asked for Rocephin. When my daughter-in-law visited unfortunately El Quijote was closed for rennovations, so I arranged for us to go to Rin, a Thai restaurant. That’s when I realized my body had closed down. It was a very peculiar feeling when one day I could eat anything and a week later (after the Rocephin) I could barely eat three or four shrimp at RIN. It was embarrassing and very depressing. I was at a loss and I was despondent. How could this happen to me. Damn the Rocephin. Why? Why? Nobody understood the significance of what happened. One week I could enjoy food and the next week my body closed up. Carolyn said I’d enjoy food again soon but how did she know. I was alone again in my own despondency.
I went back to my primary and tried a number of protocols. First was the Byron White herbal protocol which I couldn’t tolerate. It was too strong; I had to stop. On the heels of that my doctor suggested the Jemsek protocol, which consisted of several different antibiotics taken every other week. The week without medication was supposed to boost your immune system. One of the antibiotics was similar to doxycycline, which I am allergic to. “Try it my doc suggested, maybe you’ll be able to tolerate this one,” but I couldn’t. I developed a nasty rash that did go away after I stopped. Up next was Flagyl, taken at bedtime, which was painful and left me praying for morning. This clearly was not working out. I then went back to the Cowden herbal protocol, which I’d started with.
Of course, I didn’t consider all the damage to my microbiome, which was a complete mess. It would be a long journey, one that I am still on, to establish good intestinal flora after lyme and the antibiotic abuse. Not a day went by that I didn’t regret asking for that Rocephin.
I continued my weekly ozone iv infusions with Corrine and IVIG infusions at Cornell Weill. The scale went to 93 lbs. when they weighed me at Cornell each week. I just couldn’t gain weight and I probably had malabsorption as well. Someone had to escort me from the infusion room to excess-a-ride downstairs
as I was still not walking. I found it a humbling experience to have to be pushed and always remembered how I jogged around Central Park in the old days.
It was now 2020. Covid 19 was on the rise. Our governor Andrew Cuomo became a television star with his daily updates. Schools and offices shut down and communication was via internet. Restaurants were boarded up. Most of the population was sequestered. A whole army of exhausted doctors and nurses, farm workers, store clerks and others were, however, on the job and kept us going as people were dying all around us. Every evening at 7 o’clock crowds on the street rang out their support for the workers and I was in bed losing muscle mass. There in my bed I read books about lyme and possibilities of recovery. Then with Carolyn pushing me we went a few blocks away to my weekly infusion of medical ozone gas, considered quackery by the FDA but which, ironically, can be found in every ambulance in Germany and is used in Europe extensively. My IVIG treatments were stopped but resumed months later after the vaccine was developed.
To get the vaccine I hired an aid to escort me to the Javits Center for my J & J shot, only given after l0 p.m. It was immensely exciting to be in the night, the stars shining and there I was after so much time indoors. I couldn’t help but think how my life was before I got sick and the anger I felt at my illness not even being acknowledged by the medical establishment. Lyme protocols were all paid for out of pocket (except for the 4 weeks of antibiotics the CDC advises) and my pocket was being drained. This was not a disease for a retired school teacher.
When I went for the pre-op for my hip replacement, I told the doctor I had chronic lyme. I think she heard me but she didn’t utter a peep and continued with the examination. Because of the dawning of Covid, the hospital had streamlined its pre-op procedure which didn’t exhaust me as it had previously. As I didn’t eat like normal people do, my main concern for the one-day hospital stay was food. I kept hearing about being well-nourished and I hardly ate anything. However, my main concern was lyme as that was where my pain was. My son drove in from Detroit to help me and between him and Carolyn I was well taken care of. I got lots of well wishes and stories of others who’d had the operation. Unlike chronic lyme, a hip operation was something that people could relate to. The stream of antibiotics were necessary after the operation but a set back for my microbiome.
When some of the covid restrictions were lifted, I went to see my neurologist at Cornell. He was surprised when I could stand and take a few steps. ”Sometimes things work,” he said, and I agreed. At the end of the session, I asked him pleadingly if he knew a good lyme doctor. “Go to any infectious disease doctor,” he said but I knew that wasn’t the answer (many infectious disease doctors don’t believe in chronic lyme and don’t know how to treat it).
When I was home convalescing, besides getting the physical therapy provided by the hospital, I was preoccupied with the upcoming election and when the verdict came in, Carolyn wheeled me downstairs where everyone, except for the trumpies and those with mobility issues, was dancing in the street. The relief was palpable. Little did we know, however, what was ahead.
The pandemic was about to go into full tilt and it was at this time that my friend Rebecca died, probably from the virus. Rebecca lived near the Stonewall Bar and had some respiratory problems. In the evening she sat on her stoop and observed the whoopla around the bar. We knew she had allergies so when we spoke to her a few days before she died, she sounded weak but we didn’t think she would die. Then Carolyn went to check on her, and she was gone–she who always worried about me.
Then there was the sadistic killing of George Floyd–and all the others. We were living in grim times and, unfortunately, still are. The virus was raging, black people were being mowed down, and later, The Big Lie and then the insurrection.
I finally got around without Carolyn, using my transport chair as a walker. It was a joy having this little bit of independence. Unfortunately, though, I was down to 89 lbs. but then a miracle occurred when I had rectal ozone, one of the many treatments available at my acupuncturist’s. The ozone gas goes into the intestines and clears it out, killing parasites, viruses, bacteria and whatever else is in the way. I went up to an exhilarating ll0 lbs. Finally, I was really digesting. My lyme journey has not ended but I’m on my way. I have been inspired by the documentaries and many books I have read about those suffering with chronic lyme. Thank you!
I have come to believe that chronic lyme is too much trouble for the CDC and FDA to deal with. Why else would they insist that chronic lyme doesn’t exist when so many, including me, are suffering. I believe that profit has something to do with their unwillingness to see what is right before their eyes. The lyme situation promises to get worse with climate change, which increases the number and geographic range of disease-carrying insects and ticks. Lyme ticks have been found in Canada which not too long ago was too cold for ticks. Why are there deer, which carry the ticks, on Staten Island? Regions that were already tick hotspots see even more tick activity and consequently, more disease. Recently, I read in BITTEN by Kris Newby, who worked with Willy Burdorfer, the man who discovered the microbe behind the disease, that lyme may be the result of biological warfare gone wrong. Who knows?
Robie Darche Wiesner has taught creative writing in high schools in all NYC boroughs and was on the staff of The Empire State Center for Labor Studies for over 20 years. She had two novels published, THE WAR NEVER ENDS, THE AUTOBIOGRAPHY OF A SLOW LEARNER, edited an anthology VOICES FROM THE COUCH, with an introduction by Susie Orbach, former therapist of Princess Diana, her essay WINNING IN THE SIERRAS was published in the Aspect Anthology, and SO WE WENT TO WORK FOR SOLERI has been placed in the Soleri Archives at The University of Arizona.
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