Monday, March 15, 2010

The whole story of my Lyme Disease, help items follow

I am putting this up as I hope it helps others who have or think they have Lyme Disease. It is disturbing for me to read. I hope it helps others to make the choice to be proactive in their treatment.




Lyme Log


This is about 2 years after the episode where I was at my worst. The worst was where I felt I was dying. I could not walk, I almost could not talk and pain and emotions wracked my body. For a year before this I would fall down in my store occasionally for no apparent reason. I would not tell anybody about these episodes or my increasing brain fog, frankly it scared me, but I thought I was tough and could will myself through it. Sometimes my body was out of control and spasmed. My voice would sometimes come out as stuttered “uh…uh…uh”. I was getting conflicting diagnoses or just that look of unbelief from the doctors. MS was talked about, Lou Gehrigs, tumor and more. I was tested for Lyme and dozens of other diseases and came up negative. I had an MRI and found no MS. The uncertainty of the future was killing me as much as the problem. Emotions, sometimes despair was the enemy. The fact that I could not communicate fully to even tell people what was wrong was a battle I fought all the time. My wife came home and found me on the floor, unable to stand, unable to talk, my limbs moving almost with a life of their own and my son at 11 seeing this and not knowing what to do. I was ashamed I had put this on my son and my wife as a problem. At one point I was told the best hospital in the country for neurological conditions was in Boston. MGH and Beth Israel. I could not get a referral there as it was “out of system” and my primary care doctor treated me with some disbelief. He would look at me and say, “you are the one I can’t figure out, my interesting problem” and then laugh. He had no clue what his semi disdain did to me. I am not even sure he was aware of it. It made me question the validity of what I was feeling. Perhaps I was crazy.
On my trip to Boston I had my friend Mike drive me to the subway station. He did not want to leave me, as he did not think I could make it on my own to the emergency room. I figured the only way I could be seen was to walk in showing the symptoms. I knew that if I stressed myself that I would present what was going on very clearly. The 1-hour of subway travel and the ¼ mile walk was almost too much. When I arrived I did not think I could get through the door. I was weak. Almost not able to walk at all. Holding on to almost anything that I could reach. Speech was slurred, my mind was weak and my body trembled. I did not understand that to somebody else my reduced mental capacity might not seem abnormal, as they had no baseline with which to compare. My weakness was apparent. When they found out that I was under care by a primary they were angry and said that I should go through the system. They brought up the possibility of Lou Gehrigs. This is not the way you do it I was told again. They could get me an appointment with a specialist in a month or so. Inside, all I was trying to do was persevere.

The problem had affected my mental capacity and I did not have the power to effectively communicate. Physical pain and emotional burnout seemed to rule my life. I lost my business, had to quit a replacement job and I had no future as it seemed to me. I finally found a neurologist in Hopedale that listened. She checked and looked at the tests and told me that you have “vestibular encephalitic demielynization of the brain or something very like it”. My wife Barbara was with me to help listen and interpret and remember. She had been with me through all of this and seemed to be able to provide a support that I suspect most people could not have provided in the same situation. She had watched the business disappear (her’s as well as well as mine), my future and ours change and diminish, and my character change. The doctor advised us that there was nothing I needed to do as my body had already beat the infection and if I just waited and did nothing I would get better. When asked what she meant by nothing she said it meant nothing. Do not use my brain, do not read or go on the computer, let your self heal. She advised that it would take another 3-6 months to see a real improvement and that I might come back 85-95%. Some of my memory loss might be permanent as well as minor impediments.

We waited and I watched myself, sure enough that is exactly what happened. I did get better, though not completely so. I seemed to have lost whole sections of my life. I could walk and talk again, but the memory of being with my son at the hospital was gone, various vacation trips were gone, the memory of many things done with my wife and life were gone. From the outside I looked the same, from the inside I was different. I began to accept that I would never get fully better. I put down brain fog and confusion to the leftovers of my now previous problem. My fatigue and pain floating through my body came and went and seemed to improve or at least stabilize. Intermittently I was “clear” and I cherished those times. I could play with my son, write occasionally and go on vacation and start to work again. Working was a pleasure. To be of use and not to feel like a hindrance in the lives of the people around me was more important to me than most people could imagine.

Did I mention Tinitus, that ringing in your ears that a lot of people get? Mine was different though. It seemed to come and go as my other symptoms. I never got completely better; I just started to accept a diminished capacity. The ringing would scream at me. I would drive to an appointment for my new job and would arrive and have to sit in the car till it quieted, if forced to go in immediately I would pray that it would go away so I could talk and think clearly. At times it would seem to drown out conversation. My family began to laugh at me and tell me I was going deaf. The ringing would go on and off like a switch. Click it screams, twist the knob and it slowly goes away. It never goes away completely though. There was and is a lot of pain. I would get shooting pains, my chest, my wrist, my ankle, my left side, and my right side. In no apparent pattern or reason. I would wonder was I having a heart attack, had I just sprained something and didn’t know it? Was I just getting old? I began to think that this was how we all die. Slowly and over years we just accept the pain, the loss and the diminished capacity. My Doctor would say, “well I have ringing in my ears and my joints ache sometimes”. I felt crazy to be complaining about what others seemed to think was normal somehow. I noticed though that other people’s problems did not make them occasionally fall on the ground in pain, or make them hide the worst behind a smile and always the comment “no I am fine”. I noticed that people who did not know me well would ask if I was ok? “Are you sure, because you do not look ok?” It was the people closest to me who became used to it. The occasional grabbing of a body part as if in pain, the sometimes inability to think or process information, my sometimes anger at the questions of why I hadn’t done something or could not think about something right now. I looked the same outside, why wasn’t I the same inside? I found myself expecting less and less in life. I was never going to be more than I was. I would always become less.

I think the best thing that happened to me was that I became worse. I had completed a course of study. I was trying to recapture my intellect. I had passed and I was so happy. I could still learn. I could still reason. The people I went to school with seemed to treat me with respect. A respect I was not sure I always deserved as I struggled inside and with my studies. Family and friends helped me and came through. They allowed me to perhaps have hope. I was starting a business that I had experience in and could help others with. Maybe I had a future and I could work through all this. I had some success. My customers seemed to respect the knowledge I was putting to use. My advice was helping others. I felt I was affecting the world in a positive way. I seemed to be on a new track. My symptoms hadn’t gone away, but I was better at burying them.

I do not know quite how it first started. Was it increasing confusion, more pain, increasing weakness? I don’t know. It seems like it was just there one day. It really came on over a few weeks, but I pushed it back. I was always the good soldier and this was one more battle to fight. If only I was strong enough, patient enough, endured enough than the problems would be surmounted. I found myself in “brain fog” and confusion a lot. I walked to my local stop sign a bit more than a ¼ mile away and found that I was frightened that I would not make it back. I was not out of breath, my heart wasn’t racing, I was just so weak I felt that I would fall down. I had a hard time controlling my lower body. I had double vision at times. I am 50 years old and this was where my life was at. I went to Target with my son and found I did not have the strength to walk the store. I was embarrassed to ask for the handicap chair to get around. My son thought it was fun and he gave that to me and I found myself laughing at this new experience as he tried to ride on the back or race me as I powered through the store. I went to Wal-Mart alone and at one point I could not quite figure out where I was or how to get home. I was going to call my wife, but I waited till I figured it out. We had a barbecue at the house and I felt like crying all day for no reason. I finally separated it from myself and waited for it to subside and about 7 hours later it did. Walking to the mailbox at the end of my driveway became a test of endurance. I knew I could make it there, but could I make it back? When I went for a drive my ears would scream at me. The ringing like a constant woman’s scream drowning out my thoughts and actions. The pain became extreme, shooting from hand to foot to chest to head, right side, left side, grabbing and wrenching for my attention. Like a silver knife it was, small and thin and slid in at just the most excruciating point and just as suddenly extracted only to be pushed in somewhere else a moment or an hour later. I have always been a swimmer, loving the water and able to swim not just lengths of a pool, but miles if needed. I found myself frightened to enter the water. I feared that I would get too weak all of a sudden to get up or stand up. Even a few inches could kill me I feared.

I did not think that it was as bad as two years ago, but I knew it was similar. I did not want to go to the Doctors again as the last time was humiliating and I expected the same reactions. I thought all the tests would come back negative and I would be told again that we all have some kind of pain in our life. I thought that I could not endure again the condescension or belittling of my symptoms. I went and had the tests again. Lyme, arthritis and much more. All negative. My doctor told me again how he had ringing in his ears and the occasional joint pain. He watched me walk and wrote in his notes “ He walks like a 90 year old”. I thought that I knew a lot of 90 year olds who walked better than me.

It bothered me though. I somehow thought that there had to be an answer. I was just strong enough mentally to start a search. I plugged all my symptoms into the computer. “ muscle aches, confusion, weakness, ringing in the ears, numbness of arms and hands, headaches, joint pain and much more. What came up on top was Lyme disease. I knew I had been tested so I tried again and a little different. MS the computer said. I knew that I had the definitive test showing no lesions so that wasn’t it. I did another search. “Lyme disease again”. I did another search. “Rheumatoid Arthritis” came up. The test for that had been negative. I did another search. “Lyme Disease”. I figured that I would look at it as it had come up so often. I knew that I was negative, but I was curious. I took an online test that said if you had more than 20 yes answers that you should be checked for Lyme. I had 38. I found a list of all the symptoms of Chronic Lyme and found all my symptoms there. I found that it was commonly misdiagnosed as MS, Rheumatoid Arthritis, Lou Gehrigs and more. It was called the great mimic as it presented a list of varied and changing symptoms that made it extremely hard to diagnose. I found out about a court case in CT where the attorney general was suing over the treatment and diagnosis of Lyme disease. It turned out that there was disagreement about the disease and the treatment. It said that the standard test for Lyme was less than 50% accurate and that people who had conflicts of interest in the results had written the standards for treatment. No less than the IDSA (Infectious Disease Society of America) was found to be at fault. I found that RI had written laws to protect Doctors who treated patients for chronic Lyme.
I started to take the possibility of Lyme disease a little more seriously. I continued researching and found more and more information. I found out that at least 5 people who live on my street have had Lyme disease. My neurologist’s receptionist had to be tested six times before she came up with a positive result. I asked how she got that many tests done. She said she just kept pushing her doctor and he got the tests done. The result surprised the doctor, but not the patient. I thought about my sister who had Lyme and was treated, but continued to be hampered by problems that did not seem to get better. I heard about a Doctor in MA who treated people for chronic Lyme as his dad had died of it. You weren’t supposed to talk about it though, as he could get in trouble. Lawsuits, anger, state mandated treatment levels…what had I dropped into. It seemed like science fiction. I did not think that this could be my life. I was very skeptical. After all, who was I to self diagnose this problem. As I continued to research I found that hundreds of people were traveling out of their states to doctors that would treat them. The doctors were getting in trouble for the treatment. I found a doctor through a Lyme referral service in CT (where they had won the suit) who was practicing in the field as a Lyme specialist. I found out that many people went out of MA to get proper treatment, as the mandated treatment was not effective. I thought that I would give it a shot.

I am a skeptic. I doubted going down would have any effect and I assumed that I would have one more conversation without a conclusion. My wife agreed to drive down with me, as the trip was over 2 hours. I tried to drive ½ way to exacerbate my symptoms. At the ½ waypoint I was in pain, had difficulty walking and was generally weak. Barbara took over and proceeded to drive the rest of the way as well as back. I walked into a clinics office that was different. A private doctors office in an almost residential neighborhood. Where was the commercial building and normal cold and indifferent waiting room? I felt a little uncomfortable. I could see the doctor talking to another patient as I waited. I could see his manner and actions. He seemed to be on the phone a lot.
When it came to be my turn I was invited into his office. He spent a remarkable amount of time with me for what seemed like too little money. To pay for this I had scraped from other uses and my family had helped again. He spent over 2 hours with me interviewing and testing. I was amazed to find out that I could not stand on one foot with my eyes closed, or that my lower legs reacted so strongly to reflex stimulus. I was not aware to all the extent that I had been affected. He took blood for tests and suggested that I pay for the better (western blot) test on Lyme at the best lab. At the end I asked him what he thought about the possibility of Lyme disease in me. He responded that I was almost classical in my symptoms and that I should start treatment immediately.


I was skeptical inside. After all I had seen the “best” doctors and they could not give me a definitive answer. I had been told several times and by different doctors that I do not have Lyme. Why could he in one visit tell me what I had? I was not at a renowned hospital in a prestigious office. I was here in a residential neighborhood in CT. He wrote me a prescription, said that I would more than likely be under treatment for a year or more and that I might get worse before I got better. It wasn’t great news and I was skeptical, but at least he had a treatment. It was not “just wait” or “go to another specialist” or “more tests” or “I have aches and pains too”.

After I went, my sister went as well. She had some misgivings, as did I. She found a documentary called “Under Our Skin” on Lyme disease and sent it to me. It confirmed all that I had already found out and provided even more information. I would recommend it to both professionals and individuals concerned about Lyme disease. It was an astounding and eye opening documentary. I found myself looking in the mirror at the disease and myself.


It has been over three weeks now. The 14 pills a day I take seem to be having an effect. Antibiotics and probiotics and fish oil and others. The first thing I noticed was that for a couple of days, an hour or so at a time, my ringing in the ears disappeared and then came back (I had ringing in my ears constantly for more than 3-4 years). Occasionally and for a short period I would be my old self to the point where my wife would comment on it. We laughed together at things. At first my pain subsided and then it came back with a vengeance. It subsided again. Other symptoms came and went. My foggy brain would clear up for an hour or two or three. I drove two towns away and made it back. That was a real accomplishment. I write this, I had to stop because of hand pain and headaches, but I WRITE! I realize now that this will be a slow process with its ups and downs. I cannot seem to predict how I will be from day to day. The trend is better though and I have hope that I have not had before.

My sister called yesterday to tell me that she was starting to feel a little improvement. She felt she also was being helped. It helped make me feel that I was on the right path and I needed to be strong for the long haul.

I called my Doctor in CT today. I had fallen yesterday as if I had been cut off at the neck. My lower body was paralyzed for all of 1-2 seconds and then it all came back with a headache for a couple of hours. He advised me to make sure I saw a neurologist (already scheduled) to make sure it isn’t something other than Lyme acting at the same time. He advised me that all my blood work was now back. I had tested positive for active Lyme. Four or more years of pain had come down to a 10-minute phone call. I somehow did not want it to be confirmed. I do not want to be sick and the call confirmed it. So there is now no chance of a quick recovery, just a slow up and down progress. I know now that I have a plan for health and that I can make progress and as I write I am coming to terms with the actuality… of what was once a probability. I am now part of that science fiction story where misdiagnosis rules and questions remain about coverage for treatment and more. I do not blame my previous doctors. I have come to understand that they are only as good as the information they are given. The whole truth on this is hard to find. Insurance companies do not want to pay for extended treatment, doctors read what is distributed to them and we all go on without knowing. I now know that I have a future that may be larger than I thought.


My wife, Barbara, needed to talk to the same doctor today. One of our worries was that she shared in a mild form some of my symptoms. Was it possible she had Lyme as well? If she did it would be both a double blow and a double answer. The doctor called me and advised he could only give the information to her directly. I called her at work and gave her his cell phone number and advised her to take a break and call him. She called and talked for about 15 minutes and called me. “ Guess what?” she said. “I tested positive for Lyme too”. I told her to be positive and to get treatment right away. I brushed off her concern about added costs and said without each other we have nothing. We are the most important things to take care of. At least we know what to do.


Saturday, 6/27/2009

My hands tremble as I type this. The speed and ability of yesterday for the moment is gone. I have had to retype many of these words already as the letters get switched around. Have turns into hvea and moment into monet and more. I am slow and feel very weak. I just stared at the screen blankly for a couple of minutes. I woke up feeling better and I thought the new medication was helping. My ears were loud with the ringing, but my mind was clear. I took on the task of driving Trevor to the orthodontist and then to go shopping, as I drove the 30 minutes my (spelled “my” wrong three times) ears started ringing louder till it was as loud as the car. The appointment was quick, the quickest ever. I felt I could go food shopping and continued another 5-10 minutes. I entered the store and started to feel weird. The first sign of weakness and more. I continued to get more fuzzy in my thinking as I went. I could not remember what we needed or had. At checkout I was angry with Trevor, as I needed more help. He is too young for this. I held onto the carriage as we left and could not remember where we parked. Trevor guided me to the car and loaded it all as I sat and tried to find myself. I drove back a little concerned and made sure we were both buckled up. I talked to Harrison and my anger at the health care system brought a charge of adrenaline, which helped for a little while to clear my brain. That adrenaline got me home. I returned my sister’s call, but explained I was a little thick right now. It has taken me about 30 minutes to write this paragraph with more than 30-40 spelling errors. I need to pick up Mel at the train station. I will make sure she drives home.


Sunday 6/28/2009 4:30 am

Tough day yesterday. I went to bed early. I tried to be social as my oldest was here, Mel. I started to have pain in my groin and my ears were singing a tune steady and not so sweet. The pain grew as the night proceeded. I told them I was going on the porch to read, but I just sat there and held the book for over an hour and could not read a word. I went to bed twitching and trying not to groan. It felt like I had been kicked hard and now spread to my hips. I knew that it was just the disease. I am up again too early, as the new medication had advertised. The instructions said it would change my sleep habits for a few nights and it has. I told Barbara my symptoms last night and she listened, what could she do other than that. There is no taking it away with magic. The pain of last night is gone this morning. This coming and going of changing symptoms is what I am used to now. I can think again. I am going to try to sleep.


Monday 6/29/2009

I woke up feeling different. My speed is back and I can write again. There were times when there was no noise in my head. I am disappointed that my article did not get into the paper. I am angry today. I think it is a sign of health. I want to be able to do more. Provide for my family, be productive…make something. Barbara and I argued last night. It is rare for us to argue. Neither one of us is geared for conflict. It is just our equal frustration and anxiety over our predicament. It is too easy to become a victim. To fall into a trap where you are powerless. I say that there is a way, a way to change the present and the future. I am doing a countdown in my head. I have class scheduled in 2 days for energy conservation in electrical equipment. In 12 days I have a show scheduled. I have not removed either one of these from my schedule. I am waiting to see what my body will allow me to do. People tell me that I push my limits and it is probably true, but is this striving to do more make me anything else other than human. The body adapts to stress as well as the mind. Given this will I get stronger as a result or will this thing so much smaller than myself and so much more numerous beat me. I am Jeff I scream inside. I can persevere. I can do. I can make something happen.

I feel I need to talk about brain fog. That jingling clacking noise and the thickness that comes and goes. It is not something that I can push through, as it is the push that disappears. The actual force behind my thoughts and actions is locked away and I cannot find it. It is heavy and wet and something I cannot effect. I feel bad as I went back and fixed some of the things I did previously, the writing that was not clear. I feel that I have cheated myself of understanding and remembering how this has affected me. In that thought though, I recognize that I am looking forward to wellness. A time, when I can look back at this and remember. I have decided that the next time I am like that I will not fix my writing. In the future I want to clearly see the change and know for certain that there has been a change. I want to know it.

Tuesday 6/30/2009

I am a little thick today, but not as bad. I actually mae my son go with me9 hwo many 13 year olds like to go on aslow bike ride?) My ears ring, but I am definitely better. It really does feel like I am in the right rtack. When I got back after ashort risde I was so tired I fell asleep sitting up. I managed to talk to a few customers, but it is a bit like swimming through molasses. I am not fixing any mistakes in writing this paragraph today.

You should know that everyone I know with this disease presents in a different way. My sisiter Marcia had facial paralysis(Bell's Palsy), muscular aches and pains, hair loss and weight gain as well as severe fatigue. My wife has minor aches, memory issues, back pain and tingling sensations in her hands. I know of a genleman in Maine who is so fatigued he cannot get out of bed and many others. The only thing in common is that they are not the same and yet they have had a diagnosis of Lyme disease. It seems that the more people I talk to, the more and varied cases I find.

We need more people to become aware of this disease. A visit to a knowlegable specialist would have saved my family and I from years of heartache and a dependence on others. I hope what I write here might help others.

Tuesday 7/7/2009 (6 weeks) I decided to wait a week to better establish the changes in my condition. As I write this my condition has improved remarkably. I still have occassional roving pains, headaches, mild fatigue and more. The biggest difference is in the severity of these symptoms. They are so much less it is remarkable. I drove 2 1/2 hours yesterday without stopping. I had some pain, headaches and ringing in the ears, but they came and went instead of incapacitating me. To be honest I was so happy about doing this that I was bouyed up for hours. We stopped at a restaurant. We splurged on a lobster role and fried oysters and looked at the water for an hour. Pure joy in a small package.

This was Barbara's day. She went to see the Doctor(our Lyme specialist) and get her first consult. She was worried on the way down, nervous. She admitted she was surprised by the diagnosis. She said that if I hadn't decided to go that she would never have known and would have steadily gotten worst. Perhaps she would have ended up like me. We arrived and waited for the appointment. We laughed at the strangeness of life. Our own situation became a source of humor. To be able to smile like this, to laugh like this, to love like this is a joy, a small miracle. I want to savor and enjoy and repeat. Her appointment was about an hour. I could hear her laughing inside the office. This made me feel good. She came out with a course of treatment and a smile. I believe she felt that a question had been resolved. When you are not sure what has been bothering you and you believe it might just be age, to find out it is real and treatable is a relief. Her own primary care physician was telling her it was age or her work or we all have pains. I think that what we are doing could help thousands of others who share our pain, but do not know how to help themselves.

I wanted to tell you that the class I took was successful. I struggled through and thought about leaving several times. People commented on my "headaches" and I looked to sit down when I could. I made it though. In one of life's twists, I sat down next to someone else at class. As we started to talk and share our history he related to me that his wife thought he was hiding something. He admitted he was having sharp stabbing pains roving through his body, ringing ears and a malaise that he was having a hard time defining. His wife was scared he was dying. I had not told him about my history yet. As I related to him a little of my experience, I thought about the strangeness of sitting down next to maybe the one person in class who shared my symptoms and that maybe I could help. The next day he advised that he researched over night and felt that he had Lyme. He was going to see a doctor and get tested. I advised him to see a specialist to get the proper treatment. I had a funny feeling that he might have to learn this on his own. I promised myself that I would follow up and offer help when I could. Life is so strange sometimes. Was he the one person or is there so many that it is not chance, but probability at work.

Monday 7/27/2009

I am astounded at so many things I am not sure what to put here. My continuing improvement? The many people who I have met who have Lyme disease or know someone who does? Or being able to help others and in so doing help myself. Maybe it is the fact I just ran to tell my son to raise the deck on the mower and stop hitting rocks. That 200 yards I ran felt sweet. It is so good to move.

I am not symptom free...but I can work and talk and move. I call my symptoms my dying pains. They are not my dying pains, but the disease dying. It tries to come back, it tries to take me over and struggles. I win now. That battle for which I was not prepared. I now have an arsenal and a plan that is working. The symptoms are now a recurring lower body weakness when tired, rare stabbing pains, ringing in the ears, a sometimes mild thickness in the brain or fatigue. These may be bad to others, but they are great to me. I heard someone one time describe joy as a lack of pain. This is not what I feel. I feel a rising wellness in me. A reservoir of rebuilding health that brings me joy as I feel it grow. I thank God for this opportunity and his gift.

I completed the 9 days at the fair and show. I worked long days and tried to take breaks when I needed. During this time I felt I had to go to my mothers side. At 84 she had come down with pneumonia and complications from medications.Her partner in life came down with it as well. With him at 88 I needed to be agressively caring to prevent their worsening. I was able to help them both. I was able to drive late at night to get there and sleep for two nights on the floor with little sleep. I helped and I could not have done this before. That gift of energy allowed me to make a difference to someone else who is important to me and deseves my thanks. At the show I met someone else who has a family member with Lyme disease. They asked for my blog and asked if I could talk to them. I said absolutely.

Last night I talked to someone from just 11 miles away who had found my blog. We talked for more than an hour and I promised to check up on him. I felt that strange feeling again that I was talking to a mirror. His problems were so close to mine. He was not dealing with a Lyme specialist yet, so he was still dealing with short term therapies that had left him with continuing problems and insurance questions. I advised him to see a Lyme specialist and either get a referral online or see my doctor. I listened a lot. I hope I helped.

I did not expect my life to be this way. I did not expect the struggles, the questions or the sometimes doubt. This is my life though. I am actually starting to feel proud of it again.

Wednesday 7/29/2009

Not so good today. Some symptoms are back and I am exhausted. I came back with a bug(virus) from my mother, I am tired, I had a reaction to the dye used for an MRI to check my brain for damage from Lyme disease. I have had to postpone work to get my strength back. My reserves of energy are still small, just better than before. Some rotating peripheral pain in various parts of my body. It is hard to think today, mostly fatigue. I read that there is a cyclical nature to this disease. I think I may be experiencing that. I continue to write letters to the paper hoping they would write about the disease and the problems of health care in MA. Thus far no luck. To be honest I feel a little depressed. This seems unusual and that is a good thing.

Saturday 8/1/2009

I wanted to update on the conditions of the rest of my family. My wife of 15 years is turning into the woman I knew 10 years ago. To be honest it brings tears to my eyes to see her as she is now. She is talking about going technical rock climbing, driving to a car show, working in the garden and so much more. She sleeps better, thinks better and is looking ten years younger. I watch her in amazement and almost awe at the changes. Constant pain is debilitating and I am watching a miracle in front of me. At work they are asking her to be head designer occassionally. My journey has helped the person closest to me and for that I will be eternally thankful. My sister has just come back from vacation and told me how she drove 150 miles a day and visited sites over all of Arizona. She was tired when she talked to me, but sounded more energetic than I have heard her be in years. Her aspect is changing to a renewed optimism for the future. We shared our awkwardness with other friends and family about the disease. For the most part the expectation is that you are better now. Not later, but now..this instant. There is very little patience for a continuing sickness that morphs as it heals. I cannot fault them as I have been much the same in the past. If you have not experienced this it would be difficult if not impossible to understand. I find myself talking less to family about this as they want to hear that I am well now. I know that I will be well as long as I have patience and perserverance. I read my own blog to remind me and hold me to the course. This course is my path to wellness. I can feel it coming.

My own symptoms are reducing again. The bout I just had is leaving and I feel weak, but re-energized. I can feel my reservoir of health starting to rebuild again. This is less severe than I have had before and of shorter duration. It feels funny and good that I have been sick. It shows that I can be sick now, but less and recover quicker. It means that the long term outcome is what I want. I want my old self back. The outdoor enthusiast and rescue person. The person who had enough energy to tackle a big mountain or a personal problem. I find myself looking more and more to seeing this person back.

Thursday 8/6/2009

I continue to improve again. My brain is a little sharper, my strength starts to return. I am finding that optimism again. Sometimes I lose it for a little while. Somebody e-mailed me about the disease and I found it brought up one of he major costs of the disease. Guilt. Guilt at the many things that were not handled in my life. Guilt in the many things that were not helped in my life. Guilt in the many family activities I could not share or do. It cost a lot. I sometimes look at my son and wonder what it would have been like if I had been well. If I could have gone for that bike ride or hike or run. If I had had the energy to handle that problem or activity. If I had the clarity to tackle and even recognize the events that would have changed our future. I want so much to be the dad or husband that would have done all the right things at the right time. Instead the disease has cost me and my family so much even including time. All the things we should have done or could have done. I regret those things that were missed. In writing this I feel sad. I cannot let this regret stop me though. I need to move forward and leave that behind. I only need the past to alter the future. That is my wish. To change the future for me and maybe others.

I wish to include one of the letters to me in this blog. I am not alone, you are not alone. This is a journey shared by many. I am reprinting this with approval of the sender and my response.

Jeff - below is what I had typed for a comment on your blog but did not know that there was a character limit on comments. oops....!Please see below... and thanks!Hi Jeff,I was both happy to find your blog but then sad at the same time to read that someone else has this horrible disease. I like so many others, have been sick for a long time and gone back and forth to my doctor with no help. The last time I saw my original doctor - I had stressed that these symptoms had been going on for such a long time and it was time for answers. She ordered a battery of blood tests and the lyme screening was one of them. Upon leaving her office I asked her what was going to happen when I got the standard letter in the mail saying that the blood tests were normal. She said that she would contact me to discuss our next move. Well... I got the standard letter in the mail stating that all my blood work was ok. My doctor never contacted me. I waited almost 2 months to call her. Thought I'd give her enough time to go over my blood work. In the mean time while doing all that waiting I was attending school for Massage Therapy. By the the end of my hands on massage therapy class, I could barely stand it to get a massage it hurt so bad. But that was part of the class, to give and receive. I had to suck it up. In my pathology class my teacher is a doctor and she had decided to meet with everyone in the class on a one on one basis just to get to know everyone. She commented to me that I always look very tired and like I'm in pain. I opened up to her about how I was feeling. Up to that point I had not really told anyone else how I was feeling. I didn't want to feel like I was complaining. Anyway - she said that she couldn't diagnose me and that was understandable, she wasn't my doctor. But she did suggest that I get tested for Lyme Disease. I told her that the doctor ordered the lyme screening. That's when my teacher said that most times that screening comes back negative. She told me about the Igenex test and said that I should ask about it. So when I finally did contact my doctor about my blood work, I inquired about that test. The nurse I was speaking to said that my lyme test came back negative so they were not going to do any further testing for lyme. Then she said that they wanted to send me to a rheumatologist. So, I said, "so you'd rather send me from specialists to specialists and continue to get worse, rather than doing one more blood test to confirm that the lyme test was accurate". Yup, that's what they wanted. I refused to go to a specialists. I had read about too many people going that route with no help at all. I decided at that point it was time to find myself a real doctor. I contacted a women who I came across her carepage online and she's had lyme for 5 years and is having a hard time but she doesn't live too far from me. She was very helpful in providing me with a list of doctors in the state that could help. The doctor I choose is not on the list and is not a so called lyme literate doctor but is working towards one. He's treating many patients now that have lyme. My massage therapy teacher's husband has lyme. He couldn't walk up the stairs when he started treatments and now he's been on antiboitics for 8 months and is now running 5 miles. I feel optimistic when I hear of these stories.... but have to admit that most days I feel pretty down because of the things that I can't do and want to and reading about some of the lyme patients that are really having a tough time. It's not very encouraging to me. I just saw my doctor on Friday and she did tell me that this will get worse before it gets better. Not what I really wanted to hear.I had a really good day on Saturday so I went to the golf course with my husband and son. My son has been bugging me to go and watch him play. I kept telling him that I didn't think I could walk the course. But Saturday I felt like I could. And I did. It's a 9 hole golf course. My legs felt great no weakness at all and I has so much energy. I walked all 9 holes. Felt great that night, just a bit sore but.... the following day - I could barely move. Had a hard time waking up and my legs were so weak. I still feel like I'm recovering from that jaunt.I find myself looking for other stories to read. I guess in hopes that I'll read a story that is closer to mine and I'll get some hope that is won't be too bad for me. I don't know what to expect and that bothers me.I thank you for posting your story and wanting to help others. I don't think people really know what Lyme Disease really is. People around me who know that I'm sick are very surprised to hear what Lyme does. They had no idea. Me either...! This has been such an eye opener. I wish that it didn't exist at all. I pray that you continue to get better. I hope that your good days start to out number the bad. I haven't gotten to that point yet. Still have much more bad days and not enough of the good days. But I'm hanging in there and trying to keep upbeat and positive. I'm finding thats a tough thing. Sorry that this is so long and like you I have a really hard time typing. I've done my best to go back and correct the obvious mistakes. But I always find more when I re-read at a later date. Sorry..!Take care Jeff - wishing the best for you and your wife.Sheryl Kenney.ps: I was diagnosed on 6/26/09 with Chronic Lyme Disease.


On Aug 5, 2009, at 8:51 AM, Jeff Hickson wrote:
Hi Sheryl,

Getting better is a journey. It isn't quick and it requires perserverence. If I can help by talking about my progress just ask. Your story sounds like the untold parts of my own. I do not blame the doctors, I blame the system for the inadequate dissemination of information around the disease. The constant minimizing of symptoms and the shuffling to a new specialist is a story I am only too familiar with. I am so glad that you are seeing a Lyme specialist now and are on the road to wellness. I continue to see improvement. I relate it to stocks. You don't worry about the weekly ups and downs, you worry about the trend. My trend is better in general and that lends me strength. I am looking forward to the day when I feel whole and well as a rule rather than the exception. I know this is coming in a new way as I experience the changes.

By the way I had also gone to school as a massage therapist and I had given up even giving my wife massages due to steady hand pain. I am starting to do a little more as I get better. The hand pain is receding and as I do not want it as a proffession the ability to share help with the person closest to me is what counts.

Would it be OK if I posted your letter in my blog? I think it is important to share.

Peace and wellness be with you,

Jeff

Thursday 8/20/2009

It has been a little while since my last entry. That is usually a sign wellness. It is. I have continued to improve in a somewhat unsteady, but predictable basis. The herks effect has shown up. As these little critters inside my body die, I have effects from my body removing them. Isolated musle soreness, swollen lymph glands and more. Though annoyed by their presence, I am relieved to know that progress is being made.

Perhaps most noticeable in me is my improved mental acuity. I find myself sharper and stronger. I still have ringing in the ears and headaches while driving, but I can process information in a more logial and reasonable way. I am reintroducing myself to people who used to know me. I find myself talking as of old about life and politics and religion. I welcome and have the energy for deep discussions. I find myself outlasting my previous conceptions of my abilities.

I visited some old friends the other day and we talked for hours. I made eggplant parmesan and delivered it to sick relatives and friends. I find myself looking for work to do and become annoyed when I do not have it. It is not perfect. Eight hour days are a struggle and if I go over I pay a price. It is a price I will bear for now. Did you notice that? I said for now. I continually express a difference in attitude and expectation about the future. I find that this is perhaps the most remarkable change. If my writing here offers hope to anyone else with this disease, I am rewarded.

Barbara continually shows the same up and down improvement. As I write she is upstairs painting. This is something she has not done in months. The verbal complaints about her pains have all but dissappeared. My sister just completed a class in Chi Gung. She went to NY and came back less tired than she thought. When I talk to her, I find her more bright and articulate. A return to her past. All of these events are hopeful. All of these events are going as predicted...even the unpredictability of the disease. I still expect setbacks and can almost welcome them and let them lead me to the future.
Tuesday 9/22/2009

I am a monster. I have emerged from hibernation and come out to devour the world.
It has been too long since I last wrote here. It is due to the fact that I feel soooo much better.
My mind is working as in the past. I am stronger and I am BUSY. There are still things that compromise my life, but I am hungry and want to devour what comes my way. My inner self has been stifled so long that I leap at opportunities and welcome the challenges
that life is now offering.

My Doctor told me that life would fix itself if only I was fixed first. The truth is he was right on the money. Relationships are improving. I have a new job that I love. My family life is improving. There is so much that is better it is hard to list. My wife Barbara is opening herself up and becoming the creative person she was. Her worry about me (and our future) had put a clamp on the pipeline to the future. I thank God for the opportunity to find a new future and his guidance in these times. I told a fellow Lyme sufferer that I may at times have walked away from God, but he has never walked away from me.

I have not enjoyed splitting wood for years. I now find my joy returning to what I used to call my working meditations. There is an amazing amount of peace to be found in the simple expression of physical power. The steady swinging of the handle. The sharp thwack as it meets the wood and the successful sight of the wood splitting from your actions. These actions had lost their joy for me. The pain associated with them was a dam that was holding me back. The thwarting of my very nature had saddened me for so long that I had accepted (or so I thought) my limitations. This acceptance was really resignation and a resulting depression that changed my aspect in the world. It stopped me from seeing the world as it is, full of opportunities and warm with life.

Constant pain has been my partner so long that I cannot tell you when I have been pain free. Am I pain free now? No. I still have my sessions with Lyme, just less and less.
They express themselves differently. A few days of heat like a sunlamp on my skin
and sweating at night, the ringing in my ears coming and going, some floating pains and a not quite complete repair of my stamina. Am I worried? No. I continue to improve and can put my care on others. That is as it should be. My sister, at the urging of Dr. Sabovic, had an MRI. A tumor was found in her brain as well as damage consistent Lyme. We talked every day for many days about this. I talked about approaching this as a process not a problem. To not rush to judgment and let the results come to you. It is only too easy for us in life to see only the worst possible outcome. My renewed strength allowed me to help and steadied my concern. She has seen a brain specialist now and found that the tumor can be removed. The surgery is scheduled and she will be hospitalized for a few days. As she puts it, “This is the best possible outcome of this news.” The condition is repairable. Her impairments are likely to be few or none. The recovery should be remarkably quick and she can continue with her treatment for Lyme disease. My prayers and my concern are with her. I know that now I can help. I know that now I have some strength. I know that now I am more present than I have been at any time in the last seven years. I know that now I can lend a hand to others.

I want to talk a little about my talks with others on Lyme. The talks constantly revolve around insurance. Will it be covered? I am waiting for a referral. I need to get approval. I will go to someone the insurance company approves. At what point did our society culturalize us to expect others to make these decisions for us. It is our health and our decision. We should allow ourselves the opportunity for unimpeded access to health. If we need to pay for it than do so without hesitation. Take that moment to own your future and make your life better. I chose to just take the step and own up to the responsibility for my own well-being. I pay out of pocket what seems too little for a lifechanging event. I know people who will pay thousands for a vacation but will not pay 2-$300 for their own well-being. Have we been programmed so well that this little action to move toward wellness is removed from us? Did the shaman take health insurance? The dentist in the 1800’s? The country Dr.? When people at this time went to the Dr. they accepted this responsibility and expected to own the event. It isn’t about insurance it is about wellness.

11/26/2009 Friday

My own monster got removed. I got a virus and all my Lyme symptoms surfaced again to bite and gnash their teeth at me. I had difficulty walking, roving pains, fatigue, nasty ringing in the ears and difficulty driving and processing information. I managed to reach out and help someone else though and to continnue to keep my sister in my prayers. For about two weeks I struggled with this and tried to wait it out. I did. Lyme is transitory now. I am getting better again and quickly. Some fatigue and noise, but a quick and steady rise back to where I was. The Doctor advised me that the inflammation from the flu would kick up Lyme. He was right.I work, I live life and I enjoy what comes to me. I found myself dancing to music again. I found myself falling asleep and achy during thanksgiving and leaving the table to lie down. I wonder sometimes who else is out there with this. Who else will I cross paths with. My wife brought up the worry about our blood supply. With such poor testing for the disease how can we be assured that this is not being transferred even as we try to help others. Neither of us will give blood due to our disease. but what about those who do not know they have it? Barbara has been writing letters about this. I am writing this and listening to country music and smiling. Something I have not done a lot of over the last few years. The process continues.

3/10/2010 It has been a long time since I updated this. I have been able to work. I havew been successful and the actual living of my life is now larger than what the disease brings to me. Life is about momentum and the momentum continues to shift. The disease is not gone, but I enjoy life more on it's own merits and not in how the Lyme holds me. I adapt. I had a great time the other day. My wife, my son, my oldest daughter and her boyfriend got together and had dim sim in chinatown. I loved swwing all the families together and talking on a Sundat over a traditional chinese brunch. There was so much energy there and happiness. We had a great time and tried new food and all of it was less than $40 for all of us. I had to mention that. We went to my daughters place of work and I boughtt= 6 cd's for a dollar each of artists I had never heard of. I actually like some of them.

The disease does not let go, but it continues to lose ground. It sends pain and fatigue my way on a regular basis. They are turning into echos though. Those repeated sounds that lose their voice as you hear their continued conversation. I still get tired at night and limit my evening activities. I have found that work continues to be rewarding as is taking care of my family. Such a reversal! Mt ears still ring and are screaming at me now, but my own internal conversation is louder. I work, I live, I love and I effect the world around me in what I hope is a positive manner. Thanks for listening and caring. Jeff

Thursday, March 11, 2010