It rains in Maine just like everywhere else, but after a storm, you never see puddles on the beach at Pine Point. Only broken sand dollars.
It’s raining as I sit here on the screened back porch in the dim pre-dawn light. Rain is falling softly on the dunes and the patter of each drop sounds with a distinctive plunk against the cedar shakes of the roof. The music woke me about an hour ago so I made some coffee and came out to enjoy the concert. It’s the first time I’ve been up before dawn in several years. That may not seem surprising, but during that time I’ve been in the middle of a life storm and the water seemed to be rising every day.
I have been battling an elusive disease called Lyme, not knowing that I had it. Not being treated because there was no diagnostic medical test that spotted it. What began as an inconvenient puddle of symptoms rapidly developed into raging river that swept me away. Careful examinations by a team of highly skilled doctors revealed nothing definitive. Thinking that I was dying from some supernatural infirmity--or was going mad--I slipped into despair. Each day I required more and more sleep until, at one point last winter, I was sleeping more than I was awake. Fatigue was my constant state of being. Aches and pain followed me throughout each day. I felt the waters were washing over my head. I was drowning.
Finally, yet another test produced sufficient “bands” to persuade a skeptical medical team that my malaise was, in fact, Lyme disease and I was reluctantly given a stiff course of antibiotics that fought off the invading spirochetes and turned the course of the storm. The maelstrom subsided and, very gradually, the symptoms are resolving.
In the course of all of this, I’ve met some incredible people and learned first hand about what it means to have a chronic illness. Confined to my bed at night and a cozy leather couch by day, social media became my contact to the world. I traded brief messages and learned through snippets of dialogue about the anguish and the loneliness. I discovered that the grief I felt at the loss of the vibrant person I’d been is a universal constant in this foggy realm. And now that my own Lyme fog is clearing, I’m fighting to make the world at large take notice through a funny little phrase called LymeSexy given to me by a sweet young lady named @Jaisibel on Twitter. Jazzy lives in the mid-west. Thousands of miles from me, but we weather the same storm. She struggles to keep her head above the rising waters of her own puddle with her music. She’s fighting the good fight.
There are hundreds like her who follow each other’s musings on Twitter and draw comfort from the community of what we call LymeTweeps. But there are tens of thousands who don’t--many who don’t even know how to stop the rain because they don’t know they have Lyme. I’m very lucky. I was diagnosed quickly enough that the neurological ravages of Lyme are reversing. LymeSexy appeared in my sky like a rainbow offering inspiration and goal for my self-renewal: bring awareness of Lyme disease into focus and bring the hope of a return to sunny skies to those who are still fighting against the murky waters of the Lyme puddle.
I need to spread the message that Lyme disease isn’t just a threat in the woods and fields, it’s present in gardens and backyards. Pets bring it into homes and bedrooms and if you’re bit you may never know it … until it’s too late. I need to advocate reform within the medical profession, the health industry and legislative halls to recognize a reality that’s been kept quiet like some dirty little secret: Lyme disease is a raging epidemic that’s been here a long time but invisible because there has been no effective way of diagnosing it. Most importantly, I need to help others realize that finding their own LymeSexy center, that locus of positive spirit way inside, is central to regaining what they fear has been destroyed. Like the Phoenix, we can rise again.
I’m lucky because I was able to move to the beach, both literally and figuratively. Here I have new opportunities to work in areas that help people. Mainers have an enormous sense of community and social responsibility. And because I live at the beach, I watch the pouring rain but know that shortly the waters will drain through the sand. The sun will shine again. The puddles will disappear and perhaps I’ll find a sand dollar that’s weathered the storm.
Cris Edward Johnson, Maine
“You can go the medical route, combine the therapies, or go only holistic. It’s your body, so it’s your choice.”
When I saw Sally, she explained a few specifics of bio-feedback testing. “On the Spectra Vision we like to see the thyroid, the adrenal gland, etc., function at least at fifty-one percent.” My organs registered at eight to fourteen percent. One visit I needed support for my thyroid, the next, my pancreas. It was as though Sally and Dr. Lee were chasing this disease all over my body, routing it out of one place only to have it move to another.
I still only drank water and ate small amounts of sweet potatoes and bison burgers, which were the meals I’d chosen earlier when I flushed out my system. Varying my diet brought on the horrible indigestion and shaking, so I was afraid to consume even the few foods listed on the Schwarzbein sheet. Each week Sally made suggestions of something new for me to eat and encouraged me to nibble just a little.
But not being able to eat without having a violent reaction was only part of the problem. Unfortunately, after I received the supplements that would make me better and tried to take them, the symptoms worsened. I had the fever, the racing inside and the shaking sweeping over me every few minutes all night long. I called Dr. Lee and said, “Thank you for seeing me, but I can’t do this.”
“Rick, look at that big red spot on my leg,” I said.
“I used to get those all the time when I cleared land to build houses. Don’t worry. It will go away,” my husband said.
That was five years ago. Rick and I were in Williamsburg, Virginia, on the trip we’d looked forward to for a year. I had a virus, but went anyway. In spite of the July heat we’d walked through the village. When I stayed awake shivering that night, and felt weak and nauseated, I attributed it to the hot sun and the virus.
It wasn’t until one month later, when we flew to Los Angeles, California, at our daughter’s request that I knew the lethargic feeling that had stayed with me since Williamsburg might be serious. Too tired to stand when we got off the plane, while we waited for the car we’d rented, I sat on top of my suitcase. After our sedan arrived, and we got to the hotel, I forced my feet to walk until I fell on my bed. But soon we left to eat.
At the restaurant I was so sick to my stomach I barely could get down my food. After we finished rather than go out and look around as we’d planned we all went back to the room, so I could lie down. A few hours later I developed severe indigestion. I’d brought along my peppermint tea, which I had used before for stomach problems, but when I took a sip of it, I started shaking uncontrollably. This went on all night.
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The next morning Rick got us a flight home. I called a doctor and started a series of visits that lasted for one month. I told him about the red spot and said, “I think it’s possible that I’m sick from whatever bit me.”
He said, “I want to run tests.” While I waited for lab results I grew sicker and sicker. At night I started waking up every hour-and-a-half to two hours with something sweeping over me like a fever when I had the flu, then, racing inside, then shaking. I tried getting up to walk it off. I tried my peppermint tea. I tried taking Tylenol, which usually put me to sleep. Nothing worked, so I rolled up in a ball and lay in the bed waiting for the next onset.
My throat got so sore I asked the doctor if he’d give me a strep test. I thought for sure it would come back positive, he’d prescribe an antibiotic, and I’d get well. But the next time I saw him he breezed in the examining room and said, “Well, you don’t have strep throat. I’m going to take a bit more blood and run additional tests to screen for other illnesses.”
While I waited for these results by God’s grace I was able to cook, even though a meal that should have taken me a couple hours took two days, because I lacked enough energy to do it all at once. I wrote, but often had to stop before I finished a scene or a thought. I swam, but crept up and down the lane. I attended church and met some social obligations, even though I sat through many services and evenings too tired to concentrate and with horrible pains in my chest from constant indigestion. Just getting out of bed took all the spirit I could manage.
Eventually the doctor diagnosed Acid Reflux Disease and Diabetes. But, he dismissed them both saying, “You have something in your system, but we can’t identify it, so we can’t give you anything for it.” The impact of his words hit me like a boulder, but I said nothing. He stared at me compassionately for a moment. “You might be able to flush it out. Drink all the water you can hold, and no other beverages. Eat as little as you can to survive. Pick one or two foods that you like and stick with those. It might work.” I mentioned sweet potatoes. “That’s a good vegetable. Just be sure you eat a protein with them, because you have a blood sugar problem,” he said.
I came home, sat in the cricket rocking chair in the bedroom and thought, I’m not going to live. There’s no need going for another opinion. The same thing will show up in my blood no matter who takes it, and they don’t have anything for it. At this point I don’t think I was praying when I asked, What am I to do? But God answered. One thought popped into my head over and over, Call Dr. Lee. The last time I’d heard his name had been ten years earlier, and I only knew him as Dr. Lee. After a few phone calls I learned that he is Dr. David Lee and got his phone number. I also received a glowing recommendation for him.
While I was afraid of the unknown way of treating people and believed that nothing could be done, the will to survive won. I called and made an appointment for a consultation. When I walked into the lobby, I first noticed a sign that read “Be Still and Know That I Am God.” A peacefulness fell over me while I sat and listened to soothing music.
Finally, I met Dr. Lee, a mild-mannered, soft-spoken man with resolve of steel in his dark eyes. He named some illnesses he’d treated, had one man there who gave a testimony, and explained that some patients only need a few visits while others require extensive programs. I agreed to return, and he scheduled a meeting with a bio-feedback specialist, Sally.
When I went back, the office staff and patients held hands and formed a prayer circle. Dr. Lee thanked God for his tools and the knowledge to use them to make people well. Afterward Sally, who has curly blonde hair, clear blue eyes and lots of love, ran a scan on a Spectra Vision. It’s a non-invasive test that records everything in the body on a computer screen. During the scan I had a Velcro strap, which was wired into the machine, wrapped around my ankle and a brass handle also connected to the machine to hold.
After we finished Sally printed out my results and left. Dr. Lee, who I now know almost never looks disturbed, rushed into the room with an alarmed expression. “You need everything I have.”
“What’s wrong?” I asked.
You have a very toxic, sticky substance in your system, but we’ll get it out. You’ll be all right.” He asked me to stand and moved a small, handheld device over me, leaving about an inch between it and my body. “This is a violet laser, a powerful light that will help you heal. And l-i-g-h-t stands for ‘Letting in God’s healing touch.’” When he finished, he handed me a few sheets of paper. “Your blood sugar appears way too high. The first thing we have to do is get it down. Do not stray from the Schwarzbein diet by even one gram.” He recommended a three-month program with Sally in addition to more laser treatments, footbaths and supplements. He said, “You can go the medical route, combine the therapies, or go only holistic. It’s your body, so it’s your choice.”
Part 2 Friday.
The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.
DECEMBER 2006
MRI results are in. I meet with my neurologist. I do not have MS. That is good news. A relief. But what is it then, this mysterious anomaly, this cavalcade of symptoms slowly taking over my life and radically altering my ability to do the simplest of tasks? I have been continuing to track them.
Here, Mr. Dr. Neurologist, here is my list again. He briefly peruses it. "Oh, they are just too vague and non-related to mean anything." "WHAT? Hold on a minute, if these symptoms are so vague how come they are interfering with my ability to live my life?"
"Well, I am concerned about a couple of your complaints. Your weight loss, night sweats and migraine. I’m going to advise your family doctor to test you for Lupus and Skeletal Rheumatoid Arthritis." Back to my family doctor.
MY 9-MONTH JOURNEY TO DIAGNOSIS
While on holiday in Whistler, I wake up in middle of night sick. Vomiting, diarrhea and general malaise. In the morning, I have a weird rash on my lower face, across my chin.
I feel somewhat better as the day progresses, but in the week that follows, I continue to have this vague feeling of uneasiness or malaise and begin to feel extremely tired and worn out.
I figure that maybe I am just tired out due to our long five-week road trip we’ve just come back from.
Hit Robert’s Creek on the sunshine coast for vacation, one week after being in Whistler. I continue to be very tired out and am also very moody. Try to go for a run but my get up and go got up and left. During our week in Robert’s Creek, I begin to have really bad, unrelenting headaches and an incredibly stiff and sore neck and collarbone area. Once again, I chalk it up to all the traveling that we have been doing.
By June, 2007, my health had worsened to such a degree that I was confined to bed for days on end.
Over the years I have developed a total phobia of hospitals, due to the poor attitude shown by the NHS doctors and their complete lack of treatment. I had seen many doctors but there was no diagnosis, except for possible epilepsy. Most of the symptoms had landed on me at the same time. For about fifteen days I felt as though I was dying! All the doctors would say was, “We don't know, have you seen a shrink?”
I have now offered to see one, if only to prove that I'm not ill because I'm crazy, but that I'm crazy because I'm ill. Lyme Disease destroys your immune system, and because it is an organic illness it causes mental problems, rages, and mood swings, etc. due to the physical underlying cause. I feel as though I'm on a permanent bad trip! Pure evil.
After that fifteen-day spell in June, 2007 I seemed to regain what I had feared would not happen--a kind of remission. I had changed gyms by this time because I felt there was not enough cardio exercise at my old gym. I became addicted to spinning classes, doing two classes five days a week, along with body pump, bar with weights, and so on. Feeling fitter than I had ever felt-–or so I thought-–I carried on this regime for four weeks. During my last week in the gym, I felt extremely ill. My muscle and heart pains were so bad that my face went as white as if someone had painted it.
I was ill, but I didn't know how ill. By late September, 2007 I had deteriorated again. I could not move or talk properly and everywhere in my body there was pain. Then on one occasion I suffered a massive seizure. My heart stopped, and my friend, a staff nurse--knowing the seriousness of the situation--called 999.
Arghh! Waking up in the hospital AGAIN I was angry but too ill to argue. I realise she had no choice though, because I was virtually dead! Unfortunately, yet again, although my friend explained that we thought I had Lyme, the doctors said that they don't treat it.
I came home so extremely ill that I realised it had finally got me, and that there was no bouncing back this time. Desperate to find answers as to what on earth was the matter and find some urgent help, I looked on the internet and typed in these words: “Help!! Lyme disease.” This produced a web blog written by a lady called Bettine. I emailed her and was so excited to receive a reply asking if I was from the UK or USA (Lyme is even more rife in the USA) and she gave me some guidance as to the experts in the field. Hope maybe?
My son, who is my brick–-I would not be here now except for him--booked an appointment for the 30th September, 2007 and off we went to see Professor Daymond, a Lyme-literate Doctor. During the examination I felt awful. I felt as if something was crawling under my skin, but little did I know what it was. YUK! I was convinced he was going to say I had an allergy because I had once had an allergic reaction. Instead he said, “You have Neurological Lyme disease”.
I slumped in the chair and felt like death! The crawling under my skin was what I now know to be millions of parasites. I asked him if I was having a psychological reaction. I knew far too much about this disease to want it to be that, but he said, “No your body cannot cope with stress and the Lyme loves it."
He went on to tell me that the only reason I had lasted this long was because I was so fit. Exercise helps with Lyme. It gets the parasites out of their hiding places, i.e., the heart, the brain, and other organs, into normal blood flow. But then he told me I was killing myself doing so much as my exercise was all cardio-based! By this time I wanted to die, there and then. I knew the prognosis for this thing, and it wasn't good. He started me on a course of antibiotics immediately.
The return home was horrendous due to a Herxheimer Reaction, and I had yet another massive seizure later that night. In the past I had suffered seizures but I kept quiet about them-–unless it happened in company and then I had no choice. By now my family and friends knew not to call 999 as they have seen how I have been treated. I have made them promise not to call, but to let me die. Silly as it sounds I am more afraid of hospitals than of dying. Since then I have learnt that all people with Lyme have the same fear.
On my umpteenth trip to A&E the doctor, now knowing I had Lyme, said, “Go home and take your antibiotics, and you will be back in the pub in two weeks. Now can we escort you out of the building?" I was not going to make a scene. I was too ill to say or do anything except what I was told. Maybe if I had been addicted to something I would have received better treatment, but that did not shock me. While being escorted out, I overheard the doctor bad-mouthing me to a colleague who replied, "My mum has Lyme." I wanted to hang around and hear that criminal doctor's response but I was far too ill for that. You see, even if the doctors do acknowledge Lyme disease they think it is curable by treating it with a 28-day course of tablets. Not so.
In March 2009 with funds raised, I was privately fitted with a Hickman line (a catheter directly into the heart). I started IV treatment of Ceftriaxone. This was very tough. But the one drug is not enough by far; I need to be treated by a combination of drugs to tackle the Lyme and co-infections.
In May, my personal friend, a dentist, called a consultant at the hospital to ask why I could not be treated. With much persuasion and a letter from the professor who diagnosed me, I was reluctantly given three month's antibiotic treatment, funded by the NHS. On one occasion my brother attended to speak to the doctor, with the aim of asking why this treatment had to stop when it was so obvious that I was still very unwell. It was a pointless exercise, to say the least. I had called the bluff of that same doctor when I asked, “So am I OK to be a blood donor now?” His reply was the most shocking of all! He said, "Yes, Lyme is not passed on in the blood.” Any doctor who knows anything about an infectious disease should know that although parasites hide, they can be passed on in blood! Hence many out there with the wrong diagnosis may still be donating blood.
Things have steadily worsened. I am now housebound 99% of the time. Occasional trips out to son's or mum's in their car mess with my head to such an extent I cannot bear it. Not only due to the pain, the weakness, and the fear, but also the noise. A car driving past my window is like a deafening roar. I find it difficult to go down the stairs most of the time, even calling or seeing friends and family is a painful experience.
Yvonne Forey, England
Where do I start? So much has happened and so much happens daily.
In 2003 my now ex-husband and I went to the Canadian Rocky Mountains on our honeymoon. At the time I was 42 and extremely physically fit, a passionate member of the gym for many years.
While there I was rushed to hospital with breathing problems. This became the first symptom of over 100 that I eventually developed through this evil and ignored disease called Lyme.
Back home, I returned to the gym. While there I became so dizzy I felt as though I was in a washing machine. It was nothing like ordinary dizziness. That same day my friend noticed an odd-looking rash on my back, but I simply disregarded it. However, as the days went by I began to feel very unwell with flu-like symptoms. My whole body hurt and my head felt as though it was going to explode. A few days later I started suffering from vertigo--the room was spinning so fast I held on to my bed for dear life. I reluctantly went to the Doctor, where I was told, “You have vertigo. Take these tablets and it will go away.” It did go away for a while, but since then it has often returned.
The next event was the scariest. I woke in hospital, my husband by my side, after having a massive seizure. I knew nothing about it and I said, “Who was that, where am I?” I could not see properly, and again my head felt as if it was exploding! I was kept in on that occasion. I had to visit A&E many more times over the next five years.
For many months I had MASSIVE headaches. Measured on a scale from 1-10 they were 50! Weird things happened on most days. My face started to twitch along with other muscles in my body, and I experienced what felt like electric shocks in my head as if someone had put 1000 volts through my brain.
In between all this--being a gym-loving girl--I carried on regardless, often feeling too weak to exercise, but I'm a determined soul. No one ever knew just how dreadful I was feeling. Yet, from the last week in Canada, my life was never to be the same again.
I endured regular trips to the A&E over the next few years, before and after my husband left me, where they always tried to convince me that it was all in my head. Well, it sure was, but it was also creeping around my body, to my joints, heart, brain etc. I remember lying down relaxing and being so scared when I felt something rushing through my body as if life was draining from me. I thought maybe I was just overdoing it, but I was determined to carry on.
As the extreme ill feelings passed every few weeks, I thought I could then get on with life. My mouth became dry and I could not speak properly. I was like a rag doll for hours afterwards. Strangely though, I could get up the next day and feel OK. I still went out socialising, and to the gym. I also cycled everywhere! Nevertheless, all the time I had bouts of illness that led to yet more symptoms. Now, six years on, the symptoms are far worse. At times I cannot even hold a glass of water.
The symptoms that accumulated within the first year included: eye problems-–I could only see half of anything-–pain behind my eyes, floaters, “dancing” face, tinnitus, nausea, loss of hearing in my right ear (I had an ENT test), acute sensitivity to noise, hyperacusis, blackouts, painful joints, insomnia, seizures, exhaustion--sleeping for days--balance problems, pins and needles throughout my body, brain fog, and extreme fatigue. I often felt like I was losing my mind.
I was admitted to hospital several times within this first year, yet was treated for nothing. My husband had done some research on Lyme and all my symptoms fit perfectly, so I requested a blood test for Lyme, knowing by this time that the rash may have come from a tick bite. The test came back negative. This often happens, because the NHS test for Lyme is inadequate. I asked for preventatives and antibiotics but was refused.
There are over 300 known strains of Lyme worldwide. Where you're bitten makes the difference to the strain and the co-infections. Ticks carry more than just Lyme disease itself--for instance Babesia, Bartonella, Ehrlichia, etc. can all be in the gut of the tick. As it is feeding it spews back the contents of its stomach leaving you with a nasty concoction of disease.
By late 2004 my symptoms were getting worse, including bad allergic reactions and rashes on my face. All my joints were hurting. I suffered cramps in all muscles and lost cognitive ability. I developed night sweats, yet felt the cold intensely. I experienced fevers, chest pains, air hunger, heart palpitations and breathlessness. I craved sugar (normally, I don't have a sweet tooth), suffered numbness in several limbs, together with persistent lethargy. I had a constant vibration in my head and at times my right eye started drooping. I suffered intense lower back pain and my legs would completely give way. Besides all this I developed unexplained anger--rages--now known to be "Lyme rage."
By June 2007, my health had worsened to such a degree that I was confined to bed for days on end.
Part 2 Friday.
There has to be an answer! There just has to be. Please God.
At home again, I hit the internet trying to find out what was causing all this grief. I found an article on fibroids of the uterus. Everything matched! I took that into my doctor #6 who now regarded me as a lazy, drug-chugging lunatic, but he felt it was a possibility. Upon my insistence, he allowed me to get more testing and to see a gynecologist again. One thing led to another, and in January of 2000 I had an abdominal hysterectomy. There were multiple fibroids, a cyst on my right ovary, and I had adenomyosis, where the lining attaches itself directly to the wall of the uterus. Labour is way more fun and productive. Right off the bat there was an instant improvement, and I was sure I had finally beat it. I could walk, stand, and sit longer than before, and the pain had been cut in half.
I was back at work doing small errands, not picking up anything over ten pounds, going home when I got tired, and not overdoing it. Even though I was being very careful, I never completely recovered. In fact, once again I started to get worse. The pain was less, but the numbness, tingling, burning and aching were returning slowly. Everything else stayed the same as before surgery.
Then exactly two weeks to the day I had a terrific accident. A car had stopped immediately in front of me while I was watching for what I thought was a pedestrian about to cross the road ahead of me. The roads were wet and when I looked straight ahead of me it was too late to do anything but hit the brakes. I had a meridian to my left and a car coming up on my right, leaving me no place to go except into the back of the car with the pickup I was driving. The seatbelt sat right across my incision, but I had braced my legs against the floorboard. As a result I escaped damage.
I have always been an enthusiastic worker; sweat and blisters never scared me. Almost five years ago I was working two jobs. One was five hours a day and the other depended on the work load, so some days were brutally long, but I enjoyed it. My husband and I split up and it was ugly. Four police officers and a tow truck got involved because he had sabotaged my car in the process of agreeing to disagree...that's life.
I moved on and I had more time to devote to work as a result. I was building a nice little bank account, had GIC's and was in want of nothing. My life was mine again to control, that is, until I started a nagging backache along with a headache and flu-like symptoms that fluctuated on and off. I figured it must be a flu; no biggy, take a few remedy pills and push on. Only, I got worse. In the meantime, the stalking and harassment that I was enduring from my now estranged husband, but did not respond to, were starting to wear on me.
I was always worried about what would happen next, so I attributed my symptoms to stress even though I had never physically reacted to stress before. Mind over matter. He didn't matter so I didn't mind. I was using all sorts of stress-reducing techniques, but still I was getting worse. So was the harassment. Finally, I broke into tears on the morning of December 15th, 1998, from the pain that had started growing six weeks ago (and I'm a tough cookie). I took myself to emergency. The doctor there (let's call him #1) tried to get me to say ANYTHING that would make it a W.C.B. case. "Was there a pop or snapping sound?" Sorry, I didn't really believe that to be a fact. What ever happened to honesty anyway?
