Tuesday, 14 December 2010

My Lyme Disease is not the IDSA Lyme Disease ... of course not - I got mine in South Africa...!

My Lyme Disease is not the IDSA Lyme Disease… No!! I got my Lyme Disease in South Africa…

Ooops...   Oh! No!! ..  the SA Dept of Health say I must have got Lyme disease in the US or Europe… !

Guess what !!   I’ve never set foot on US soil and I spent 8 hours in Paris in 1977… 8 years before I was ever 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 really have to wonder...

I have been battling for well over 20 years from constant fatigue. I had tick bite fever in 1985 and again in 1994. For the last 16 years I have 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 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 and in an attempt to get out of the 'craziness' that was Johannesburg , we found a smallholding in De Deur where we lived until 1988 when we moved a few kilometres to another smallholding in Walkers Fruit Farms, Walkerville, south of Johannesburg, South Africa.

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 properties were 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 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 really ill with a terrible headache and an awful feeling in the pit of my stomach. I managed to visit the doctor the next day, who advised me that I had tick bite fever.  Due to my reaction to tetracycline (photo sensitivity) he used 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 phase of my life that I would back on with terrible regret.

Somehow, there were always little niggly things that crept up on me. Firstly, the thumb of my left hand 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 too unbearable to cope with.  It cleared up after about 3 injections.  Then I developed the most excruciating pain in my neck.  I consulted with a chiropractor in Vereening, who despite his expertise was unable to help me.

Then family doctor suggested that the only way to help me out of all the pain and discomfort was to put me on HRT.  I was 36 years of age. He assured me I was entering peri-menopause.  I believed him... After all, he was the doctor! This was about 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 this happened, nothing was obvious as my face looked 'normal'.  There was just this weird sensation which seemed to affect my vision, but the doctors looked at me as if I was mad when I told them how I felt.

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 faces.  They looked like the outside shell of a hen's egg...   One of the smart asses there asked me rather sarcastically if this was 'due to Female Problems'...  I still hope to slap him into the next century if I ever see him again. His name was Stephen Louw just for the record ! (I may just forget the name as one of the things Lyme does to you is steal your memory and brain !!)

I underwent all kinds of treatment including cortisone injections into the sockets of both eyes and all sorts of tests. 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 just the stripe pattern of a Zebra.  There was also always the constant tiredness, which I now know as chronic fatigue, headaches, body pain and sore joints. It felt like I had Fibromyalgia/ME.

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 always the pains came back.  Life was really a struggle bringing up 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.  I was '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 course of the next few month.   I was put on traction four time in 1999 and then under went a cervical manipulation for the pain to my neck.  It was too borderline for a neck–fusion… Something I look back on and wonder what would have happened if the surgeon had just decided to operate… !

In 2000, after several problems with my bladder, I consulted with a neurologist in Rosebank, Johannesburg. After several neurological tests, I was informed 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 operation for the bladder and that helped for a while with the 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 undertake a great deal of research, 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. 

In 2004 I found the strange feeling I was experiencing in my head were just too much to put up with any longer.  They were getting steadily worse and worse since 2001.  I was attended to by a neurologist who prescribed Lamictin for me 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 glad of that as I had been on all sorts of other medication from the ENT specialist, which did not work, prior to this. So 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 ruled out then. The family doctor told me that I could be suffering with any number of diseases.  Lupus, Sjorgren’s Disease, Epstein-Barr, Lou Gehrig Disease.  All these and more, were mentioned.  All this time I was taking prescribed medication to 'help me cope' with anxiety.  Later, this was to became 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 Romburg Syndrome as I was unable to balance on one leg with my eyes closed.  Neurologist #4 treated me with epileptic medication...
Since then, I have been on all sorts of medications to help me cope with my aching body and diminished sight.  I developed a problem with the enzyme levels in my liver.  The levels were exceptionally high and I developed a 'fatty liver'.  In 2007, I developed an infection in one of my wisdom teeth and it was finally agreed they should all come out. 

This event staged the beginning of the end into the depths of despair.  I suddenly developed the most awful fatigue I had ever experienced in my life.  Work was too difficult and when I came home, I crashed - it was impossible for me to even 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 gall bladder soon started playing up and a gallstone of 11mm was picked up in a scan in 2008.  I felt awful ALL 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 had a really strange experience.  It felt like I had passed out for a split second, but I suddenly started to feel really ill.  I went home immediately and crashed to my bed.  I didn’t get out for over 24 hours, and then it was to feed myself and the dogs…  On the Monday, I went to 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   / why !!

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.  Then I went to the local Sandton Clinic but nothing worked from them either.  Antihistamine, cortisone, cortisone cream - nothing helped. I scratched and itched non-stop.  My skin was raw.

From the beginning of December 2009 I became more and more tired.  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 up 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 just wasn't capable of doing much else.  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 predicament which had been going on for months.  I was very open with him about my condition but I think he thought I was making it all up.  Things went just from bad to worse. My legs became weaker and more painful, it became harder and harder to walk.  The cough which I had since about 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 20 to the dozen!  Previous ECG's had indicated that my heart was well... For the previous six weeks I had been unable to walk properly and my legs were in constant pain. They ACHED like HELL! 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.  Then I was so exhausted 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.

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 appoint to see her in two weeks.  She interviewed me and then sent me for a batch of blood tests.  I was tested positive for Lyme disease (Borrelia burgdorferi), Q Fever (Coxiella burnetti) and Rickettsia (Conori).

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 need to stay indoors and away from strong light.  This wasn't been too 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.

Brain fog and feelings of being totally spaced out.  I felt 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 all of 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 too awful to listen to.  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 simples of instructions became too difficult for me to follow.  My job, which I could normally do standing on my head, blind-folded, 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 little blighter's that may be lurking undetected in my system.

I have to wonder now, how many other people in South Africa have a similar situation to me and have 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 to mine. 
My immune system has gone haywire and the body is attacking itself, so to speak.  I was quite numb when my Lyme doctor described what was happening to my body.  But 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 could be from a tick bite 25 years ago... and NOT the MS that was diagnosed as a possible illness some 10 years ago!