My Lyme Disease is not the IDSA Lyme Disease… No!! I got my Lyme Disease in South Africa…
The South African Dept of Health told me in 2010 that I must have picked up Lyme disease in the United States or Europe…! It was Not possible to contact Lyme Disease in South Africa...
I’ve never set foot on US soil. My time in Europe consisted of 8 hours in Paris in 1977…
That was 8 years before I was bitten by a tick in my own garden in Johannesburg, South Africa. So unless I magically caught Lyme Disease whilst Astral Travelling one night to the US or Europe, I have to wonder how the bacteria found their way into my body... !
I tell you my story in the hopes that if you find similarities to your life, you may be guided to seek help from a Lyme Literate medical doctor. I saw over 30 specialists before I found someone in 2010 who correctly diagnosed and treated me.
I battled for well over 20 years from constant fatigue. I experienced tick bite fever in 1985 and again in 1994. For 16 years I firmly believed that what I was experiencing was Lyme Disease.
Chronic fatigue, retinal problems, constant body pain, fibro, arthritis, etc, etc. I researched until I was happy that I knew what was ailing me but my family doctor from the 1990's told me that since I did not live in the US, it was impossible for me to have Lyme Disease...
In 1983 our family moved to Johannesburg from Cape Town. In an attempt to get out of the 'craziness' that was Johannesburg, we found a smallholding where we lived from 1984 until 2000.
It was wonderful living in the country and not having to cope with the daily madness of Johannesburg. Coming from a somewhat laid-back Cape Town, I found Johannesburg too much of a buzz for me. Our property was about 5 acres of land. We had horses, geese, ducks and lots of dogs. However we noticed more and more how the dogs despite regular dipping, would come back to the house covered in ticks and so began the nightly ritual of de-ticking.
In 1985 I found a tick had bitten me. I really wasn’t too concerned as I’d had lots of tick on me, even the stripe legged Bont ticks which cause necrotic wounds. I pulled it out, washed the wound with disinfectant and thought nothing more of it. A few days later whilst having a braai (barbeque) with friends, I suddenly started feeling ill with a terrible headache and an awful feeling in the pit of my stomach. I managed to visit the doctor the next day and was advised that I had tick bite fever. Due to my reaction to tetracycline (photo sensitivity) he told me it was best to use the next best drug – seven days on erythromycin. I got better and assumed that all was well. Little did I realise that I was entering a new phase of my life that I would back on with much regret.
There were always little niggly things that crept up on me. Firstly, my left hand thumb became so painful I could not use it. Over the space of the next few months, I had several cortisone injections into the first joint of my thumb as the the pain was unbearable. It cleared up after about 3 injections. Then came the most excruciating neck pain. I consulted with a chiropractor in Vereeniging, who despite his expertise was unable to help me.
After this, the family doctor suggested that the only way to help me out of all the pain and discomfort was to put me on Hormone Replacement Therapy. I was 36 years of age. He assured me I was entering peri-menopause. I believed him... This was 1988.
During 1990, I developed a strange sensation on the right side of my face. It felt as if my mouth was drooping and my right eye would twitch. This went on for years, but the family doctor could not tell me what it was. I just learned to cope with it. Looking in the mirror when it happened, nothing was obvious as my face looked 'normal'. There was just this weird sensation which affected my vision, but the doctors looked at me as if I was mad when I told them how I felt. One neurologist told me there was something wrong with my nervous system but he had no idea what was causing it.
In 1994, I contracted tick bite fever again, but this time it was ten times worse. I had a temperature of 40 deg C for about 3 days, was delirious and hallucinating. I lost 5 kilos in about 3 days. As a result, I was forced to resign from my job at a local estate agency in Mondeor. I had lost 20% of the vision in one eye and was blind to the extent that I couldn't make out features of peoples faces. They looked like the outside shell of a hen's egg... One of the smart asses at work asked me rather sarcastically if this was 'due to Female Problems'... I still hope to slap him into the next century if I ever meet up with him again.
I underwent all kinds of treatment and tests, including cortisone injections into the sockets of both eyes. The attending Ophthalmologist, Dr L K, who was regarded as the top retinologist in the country at the time, had never seen a patient with my symptoms before, so he treated me as best he could with antibiotics. I don’t recall what they were, but it was to clear up the damage in my left eye. Blood had seeped into the fluid in the eyeball and I had developed black spots in my vision, from retinal damage.
With time I improved, but the flashing lights in my left eye never went away, nor did the funny stripe pattern that was visible to me at all times in the upper left quadrant of my left eye. It looked like the stripe pattern of a Zebra. There was constant tiredness, which I now know as chronic fatigue, headaches, body pain and sore joints. It felt like I had Fibromyalgia/ME but I was never treated for this condition.
In about 1997, I saw a Russian doctor in Johannesburg who treated me with magnetic therapy for the pain and Vit B6. It seemed to ease things for a while, but the pains always came back. Life was really a struggle trying to be a mother to two young children. My husband was away a lot of the time for work and so the responsibility for me was hard, especially as I had no other family to turn to for support. I was literally 'on my own' !
In 1999 I developed a tinging sensation down my right arm and leg which was worse when I drove my car. When I watered the garden with the garden hose, my right arm would go completely numb after just a few minutes. It steadily got worse over the following months.
I was put on traction four times in 1999. When that did not help I underwent a cervical manipulation of my neck. The Neuro Surgeon felt it was too borderline for a neck–fusion and suggest I wait 5 years until technology caught up… Sometimes I look back on this and wonder what would have happened had the surgeon decided that he needed to operate… !
In 2000, after constant problems with the bladder, I consulted with a neurologist in Rosebank, Johannesburg. After testing, he informed me that I may have early stage Multiple Sclerosis.
However, I wasn't given any medication and was basically left on my own. I did undergo a TVT for the bladder. That did help with the long term incontinence I had been experiencing for about 10 years by that stage. This was my second bladder operation, the first being in the late 80's.
I was able to research Multiple Sclerosis and felt better that at least I had a 'diagnosis' and had a handle on things. I researched MS like crazy, took supplements till I got thoroughly sick of them, improved my eating habits to include foods to help the nervous system.
By 2004 the strange feeling I was experiencing in my head since 2001 was too much for me to put up with any longer. They were happening more often and were more intense. I was attended by a neurologist who prescribed Lamictin to treat me for 'epilepsy'. A few months into the treatment, I noticed that the constant sore throat that I had experienced for about 4 months, mysteriously cleared up. I was relieved as I had been on other medications from the ENT specialist. These meds did not work for me, so this was one less problem on my list !
In 2005, a second MRI showed that the plaque on the brain had not grown, so the chances of my having MS was then ruled out. The family doctor told me that I could be suffering with any number of diseases. Lupus, Sjogren’s Disease, Epstein-Barr, Lou Gehrig Disease, to name a few... All this time I was taking prescribed medication to 'help me cope' with anxiety. Later, this was to become anxiety and severe panic attacks.
From 1986 until 2009 five neurologists all told me that there was definitely a problem with my nervous system, but not one of them could give me a diagnosis. Neurologist No 2 told me I suffered with Romberg Syndrome as I was unable to balance on one leg with my eyes closed. Neurologist #4 treated me with epileptic medication...
Since then, I was given all sorts of medications to help me cope with my aching body and diminished sight. I developed a problem with the liver enzyme levels. They were exceptionally high and I developed a 'fatty liver'.
In 2007, I developed an infection in one of my wisdom teeth. It was agreed they should all come out as they could be the cause of my constant debilitating headaches.
In 2007, I developed an infection in one of my wisdom teeth. It was agreed they should all come out as they could be the cause of my constant debilitating headaches.
This event sent me into the depths of despair. I suddenly developed the most awful fatigue I had ever experienced in my life. Work was difficult to cope with and when I came home, I crashed - it was impossible for me to try to cook a meal. I would collapse on my bed and sometimes wake up the next morning having had no supper. So began the consumption of pre-packaged meals... an evil in itself... !!
My gallbladder soon started playing up and a gallstone of 11mm was discovered in a scan in 2008. I felt so weak and ill ALL of the time. Day in and day out... I was constantly visiting the family doctor only to be put on antibiotics for flu, or treated for mosquito / spider bites...
In October 2008, whilst sitting at my desk I passed out for a split second, then suddenly started to feel really ill. I drove home, scared of passing out again, and crashed. I didn’t get out of bed for over 24 hours, and then it was only to feed myself and the dogs…
I made an appointment to see the family Doctor who told me that I had experienced a TIA. (transient ischemic attack: brief episode in which the brain gets insufficient blood supply). It took me over 6 weeks to recover from this incident. The one big positive thing from the TIA was that from that point in time, my incontinence stopped… ! I have no idea how or why this happened !!
In November 2009, I noticed what I presumed to be a another spider bite, then there were two and then my body was covered in these bites… I tried to treat myself with cortisone cream from the local pharmacy and anti-histamine, but all to no avail. I went to the local ER Sandton Clinic but nothing worked from them either. Antihistamine, cortisone, cortisone cream - nothing helped. I scratched and itched non-stop. My skin was raw.
In December 2009 I became more and more tired each passing day. The fatigue was so bad that I was in bed for days on end over the Christmas and New Year period. I could barely get out of my bed to go to the toilet. I didn't go anywhere with the family over this period either as I just did not have the energy to get out of bed. When I did manage to drag myself up, to feed the dogs and myself, I would be propped up with a pillow watching TV just for a change of scenery. It felt like I was dying.
I wasn't capable of doing much at all but my then boss insisted that I return to work on 6th January 2010 despite the fact that I was feeling like death. He was extremely insensitive to my heath issues which had been getting worse for months. I was very open with him about my condition but I think he thought I was making it all up. Things went from bad to worse. My legs became weaker and more painful, it became harder and harder to walk. The legs felt like they were filled with concrete. The cough which I developed in August 2008, and tamed, came back with a vengeance. I was having constant angina attacks. I'd wake up in the middle of the night with my heart bashing away twenty to the dozen! Previous ECG's had indicated that my heart was well... Nothing took away the pain, not even my good old faithful - Nurofen. I was scared that if things continued like that, I would end up with a hip replacement or even worse, bound to a wheelchair.
I struggled each morning to drive to work and then walk to my office. A trip which would normally take 3 minutes now took me about 10 minutes. I was so exhausted by the time I reached the building I worked at. I could barely talk by the time I got to my desk. All this time I was considered to be shirking my duties at work. There was no empathy whatsoever!
Fortunately, in January 2010 I met someone I had not seen in a long while and I was told about a doctor who treated people with chronic fatigue. I was able to get an appointment to see her after two weeks. She interviewed me and then sent me for a batch of blood tests. I tested positive for Lyme disease (Borrelia burgdorferi), Q Fever (Coxiella burnetti) and Rickettsia (Conori) and Mycoplasma pneumoniae.
At the end of February 2010, I started my first course of two tetracycline antibiotics per month for 7 days. Because of my sensitivity to sunlight, whilst taking Tetracycline, I needed to stay indoors and away from strong light. This wasn't much of a problem as I felt so sick I couldn't venture out of bed, net alone the house. Driving was impossible due to the way my brain has been affected by the Brain Fog caused by the antibiotics killing off the bacteria affecting my body.
I felt totally spaced out and as if someone has hit me over the head with a brick. Thank heavens I was booked off work so that I could cope with this. It was impossible to think straight or even understand what people are saying. I was totally confused all of the time. Nothing made sense. The slightest sound was offensive. I could not understand what people were saying to me. My head and body felt as if they belonged to two very different people! The simplest of instruction became too difficult for me to carry out. My job, which I could do standing on my head - blindfolded, became a nightmare.
I am not sure how long this treatment will take for me to feel better but I understand the average time is about 8 months. I feel like a load has been lifted from my shoulders now that I have a PROPER diagnosis.
The fear of ending up in a wheelchair is still with me due to the complications of the co-infections of Lyme Disease, Q Fever and Rickettsia, not forgetting any other bacteria that may be lurking, undetected, in my system.
After this experience, I have to wonder how many other people in South Africa have experienced a similar situation to me and have received a wrong diagnosis.
We seriously need to raise the level of awareness of this dread disease in our country and around the world. By me telling my story, maybe it will strike a cord in someone in similar circumstances and help them to figure out what could be going on in their body.
I was quite numb when the Lyme Literate medical doctor explained to me that my immune system has gone haywire and that the body is attacking itself, so to speak.
With her help and guidance, I know that I am on the way to recovery and to finding the old Me again, however long it may take.
Who would have thought that my sudden illness in 2010 could be from a tick bite 25 years earlier... and was NOT Multiple Sclerosis as was diagnosed 10 years before!
