Sunday, 19 December 2010
Response: My disease is not the IDSA Lyme Disease...
From: Pam Thomson
Sent: 16 December 2010 10:57 PM
To: firstname.lastname@example.org (The Editor)
Subject: My Lyme Disease is not the IDSA Lyme Disease… No!! I got my Lyme Disease in South Africa…
I write in response to the recent article in the Chicago Tribune where your journalist makes some unacceptable statements about the treatment of Lyme disease in the US and that in itself will have ramifications around the world. Here too in South Africa, where I have had Lyme disease, from a tick bite in my own garden and our Department of Health tells me jut this very week, that it is impossible to have got Lyme in South Africa... - I must have got it in the US. I have never set foot on US soil and I was last in Europe in 1977 for 8 hours in Paris, 8 years before the tick bite.
The article was damaging in it's title to start with, calling it a 'dubious diagnosis'. To make matters worse, she even chose to mis-quote pro-ILADS doctors, Lyme activists and patients that she interviewed. As a patient myself, and waiting 25 years before a proper diagnosis was given to me, I take exception to this kind of reporting. I was only diagnosed in February 2010 and I believe had I not been given the long term antibiotic therapy, I would probably be in a wheel chair by now or even worse, six foot under !!
Lyme disease is known as The Great Imitator and I for one have been mis-diagnosed with MS for well over 10 years, not even given medication to help me with the condition. It is only now that I have managed to find the only Lyme literate doctor in my country that I am finally being treated for the root cause of my illness - a bacterial infection of Borrelia burgdorferi after a bite from an infected tick or two in 1985 and 1994 in my own garden.
I have battled for well over 20 years from constant fatigue. Since 1996 I have firmly believed that what I was experiencing was Lyme Disease. Chronic fatigue, retinal problems, constant body pain, fibro, arthritis, brain fog, 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... I live in South Africa. A big mistake on his part and as a result, it prevented me from getting proper treatment for over 16 years.
In 1985 I had several cortisone injections to stop pain in my thumbs. The at age 36, I was placed on hormone replacement therapy as the family doctor was convinced I was experiencing early menopause... During 1990, I developed strange sensations on the right side of my face, Bell's Palsy. Then in 1994, when I contracted tick bite fever for the second time 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. I 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... I underwent all kinds of treatment including cortisone injections into the sockets of both eyes and all sorts of vision / eye 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 like mine before, so he treated me as best he could with antibiotics 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. I was left with flashing lights in my left eye which never never went away, nor did the 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 the constant tiredness, which I now know as chronic fatigue, headaches, body pain and sore joints.
In 1999 I developed a numbing, tingling sensation down my right arm and leg which was worse when I drove my car. I could not even water the garden with a garden hose without my arms going completely numb. 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 for the sever pain in my neck. I even had a cervical manipulation in an attempt to loosen up the neck spasm. Fortunately, 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 ongoing problems, I consulted with a neurologist in 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. In 2004 I found the strange feelings I was experiencing in my head were just too much to put up with any longer. They were like split second seizures and getting steadily worse and worse. I was prescribed Lamictin by a neurologist to treat me for 'epilepsy'. Then 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, Sjogren'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. 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 so exceptionally high, I developed a 'fatty liver'. I developed the most awful fatigue I had ever experienced in my entire life. Work was too difficult for me to cope 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.
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.
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 on the couch with a pillow watching TV just for a change of scenery. It felt like I was dying.
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! Restless legs and cramping interfered with my sleep. Nothing took away the pain, not even my good old faithful painkillers. 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), Mycoplasma and Rickettsia (Conori).
At the end of February 2010, I started my first course of two tetracycline antibiotics per month for 7 days. 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. Eventually I had to quit my job at age 57, with no insurance, sick pay or disability. 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 was too sick to even fight for my Rights...
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.
I have to wonder now, how many other people in South Africa and around the world 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 your journalist reporting in the manner she did, makes a mockery of what Lyme literate doctors and their patients are fighting for. Fighting for the right to be treated for Chronic Lyme Disease which certain sectors say does not exist. Yes, I take long term anti-biotics therapy and I may have to take it for up to 4 years - that's another 3 plus years for me. Had I not found my Lyme doctor in February 2010, I firmly believe I would either be dead by now or on death's door.
My immune system has gone haywire and the body is attacking itself because of the bacterial infection that has been lurking in my body for 25 years. I was quite numb when my Lyme doctor described what was happening to my body and explained how ill I was. 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.
Please do not allow reckless reporting by your journalists to jeopardise the futures of hundreds of thousand of patients around the world from getting proper treatment for their Lyme disease and it's co-infections. It really is a matter of Life versus Death !