Sunday, 26 December 2010

What you can expect to happen after you have been bitten by a tick

Let it be said, that treatment with tetracycline is VERY important if you don't want to land up feeling like a bus has run you over in a few years time...  antibiotic therapy is most important, and can be life saving. 
Tick bite fever is a bacterial infection (rickettsia) transmitted by ticks. The symptoms of tick bite fever can vary considerably in severity and should be treated with antibiotics such as doxycycline.  This condition occurs in many areas of the world and is often known by a variety of names.  Where there is rickettsia, more often than not, lurks Lyme disease (borrelia burgdorferi).
A course of 3 weeks of Doxycycline can stem the development of Lyme disease and it's co-infections, but there is no guarantee.  This tiny little creature, sometimes the size of a poppy seed, is deadly.
Without proper treatment, you may experience joint pain and stiffness of th body if your disease progresses as well as neurological symptoms. A great number of people who develop Lyme disease experience joint pain and usually one or two joints are affected at a time,.  The knee is the the most common joint, followed by the shoulder, ankle, elbow, and hip.  Initially, joint discomfort may come and go but after months of infection, more typical symptoms of arthritis occur, with swelling, redness, and pain in the affected joint that may last for months if not years.
Some patients have no symptoms, despite evidence in the spinal fluid of the bacteria that cause Lyme disease. Others develop typical symptoms of meningitis, which include headache, stiff neck, and light avoidance. Nerve inflammation can manifest as facial muscle paralysis, often with just one side affected, causing a distorted appearance and drooling, or as pain or paralysis in the arms or legs. Seizures, eye inflammation, emotional changes, depression, and poor memory and concentration can also develop. Children tend to develop irregular, jerky movements of the arms, legs, or face. Some say that Neurological symptoms usually resolve within a few months, but mine have persisted for 11 years.  They started about 5 years after my last bout of tick bite fever.
Heart symptoms can occur in up to 10% of patients with untreated Lyme disease. and can show up as abnormal rhythms, which may be noticeable as palpitations, or as confusion, fatigue, dizziness and/or fainting. Sometimes patients are not aware of symptoms.  I thought my symptoms were related to my age, until I received a true diagnosis after blood tests.
Neurological changes can also happen, with memory and concentration problems, inability to sleep, chronic fatigue, and even personality changes. Specific nerve disorders may also persist, causing partial paralysis in affected muscles. i.e. Bell's Palsy and Parkinson's disease.
Sometimes musculoskeletal problems become chronic even after correct Lyme disease treatment has appeared to have been successful.   Lyme disease has symptoms similar to those of chronic fatigue syndrome, including chronic pain, headache, fatigue, joint stiffness, and sleep disturbances. All are difficult to diagnose with certainty. Fibromyalgia, which can occur after Lyme disease, is also characterized by similar symptoms.

My advice.  Don't mess about with any tick bite.  Seek a doctor who is WELL VERSED in the treatment of Rickettsia and Lyme to ensure you don't relapse.  After 16 years of mis-diagnosis, I ended up having to stop work at age 57 due to my ill health caused by rickettsia, Lyme disease and Q Fever, all of which I pick up in South Africa in my own garden in Johannesburg, despite the fact that the Department of Health deny this is possible !!


Saturday, 25 December 2010

Lyme disease research in SA

Lyme disease in South Africa.

Department of Psychiatry, University of the Witwastersrand, Johannesburg.

Abstract

OBJECTIVE: This article presents an overview of Lyme disease (LD) as it applies to neuropsychiatry and summarises research results on the epidemiology of LD in South Africa.

Will Family and Friends ever understand... ?

I continually get frustrated as family just do not get what Lyme is all about, despite seeing me live with it for about 25 years.  Now matter how much you try to explain to others what is is like living with Lyme, unless they themselves have Lyme, they just won't get it.

If you are lucky, they may grasp certain aspects of your suffering, but don't waste your energy trying to justify why you can't work or why even a trip to the shops for groceries can feel like a major expedition for you.  You can talk yourself blue in the face trying to explain why you should eat organic at every meal, why loud places, loud noises and music can drive you demented.  Why even perfume no longer smells as good as it  did year before your illness...

The problem is, people with Lyme generally look so well and healthy that it is difficult for others to comprehend they are not well.  Maybe even trying to pull the wool over everyone's eyes...

Even telling your family and friends that Lyme disease is the reason for your memory loss, they will still wonder why you forget to turn off the tap, put the frozen food back in the fridge instead of the microwave to defrost or even why you leave the stove on.  They will tell you to pull yourself towards yourself and won't understand your bouts of anxiety and/or depression.

Monday, 20 December 2010

Multiple Sclerosis... or could it be Lyme disease ?

Doctors still do not have answers to the question of what causes multiple sclerosis.  
However, there is interesting data that suggest that genetics, a person's environment, and possibly even a virus may play a role.  
Did you know that many people who are diagnosed with MS also test positive for Lyme disease.
This was my experience.  I was diagnosed in 2000 with possible MS and it was only in February 2010 that I tested positive to Lyme disease (Borrelia burgdorferi).

Sunday, 19 December 2010

Response: My disease is not the IDSA Lyme Disease...

My email response to the recent article in the Chicago Tribune...

by Lyme SouthAfrica on Friday, 17 December 2010 at 03:01
Receipt Acknowledged:

From: Pam Thomson
Sent: 16 December 2010 10:57 PM
To: ctc-tribletter@tribune.com (The Editor)
Subject: My Lyme Disease is not the IDSA Lyme Disease… No!! I got my Lyme Disease in South Africa…
Importance: High

Dear Sir   

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 ! 

 Yours sincerely 
 Pamela T
 Johannesburg 
 South Africa. 

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!













Thursday, 9 December 2010

My Lyme Disease is not the IDSA Lyme Disease

This article was posted by Ashley van Tol in response to an earlier article in the Chicago Tribune.

I became ill myself in 1985 after my first dose of Tick bite fever.  The 7 day anti-biotic treatment was not enough to stave off damage to my system by the bacteria.  Nor was the second lot of meds in 1994 !!  I continued to get ill, but the doctors could not tell me what was wrong.

Ashley's report could well have been written by me.  It took me 25 years to get a diagnosis of Lyme disease and it's co-infections... My Lyme doctor has told me to expect at least 2 to 3 years before I feel better.  Two to three years where I have no income because I am unable to work and because I do not qualify for disability as the Old Mutual insurance companies said, I should be better in 3 months.  They know SQUATT !!  I have even paid for a life policy with disability cover for over 16 years...  They are happy to take your money, but when it comes to a claim, it seems they turn their head away... !!

and the beat goes on......

"I personally met the CDC criteria for reporting with 8 positive bands on my IgG Western Blot, yet my case was not reported in Ohio. When I called the CDC to tell them my case wasn't reported, they told me that if I wasn't happy with my doctor, to get a new doctor. 


They had no concern whatsoever that my case wasn't reported."

More disturbing news on Lyme...

Here is a link to an article recently written in the Chicago Tribune - from Blog Let There Bee Light !!

Lyme Disease and Biowarfare: Another Accidental Release of Information

Lyme Disease and Biowarfare:
Another Accidental Release of Information

By Elena Cook
http://www.elenacook.org
Once again, there has been an accidental release of information from the US biological warfare establishment, confirming that the agent of Lyme disease is a bioweapon.
In patent no. WO/2008/147879 filed with the World Intellectual Property Organisation (WIPO), UMDNJ Biomedical Informatics expert Ryan Golhar PhD describes "a processing technique, associated method, product description, and related software... for achieving rapid identification of DNA".(1) The author explains how his invention may be used to detect a very wide range of biological warfare pathogens:
"The present invention provides methods and devices for the identification of bioagents via the presence of their nucleic acids. In the context of the present invention, a 'bioagent' is any organism, living or dead, or a nucleic acid derived from such an organism. Examples of bioagents include but are not limited to cells (including but not limited to human clinical samples, bacterial cells and other pathogens) viruses, toxin genes and bioregulating compounds). Samples may be alive or dead or in a vegetative state (for example, vegetative bacteria or spores) and may be encapsulated or bioengineered."
Golhar then goes on to list the many biowarfare pathogens, which may be detected using his technique. The list is subdivided into bacterial, viral, toxin, and fungal weapons. The list of bacterial agents is as follows:
"Bacterial biological warfare bioagents capable of being detected by the present methods include, but are not limited to, Bacillus anthracis (anthrax), Yersinia pestis (pneumonic plague), Franciscella tularensis (tularemia), Brucella suis, Brucella abortus, Brucella melitensis (undulant fever), Burkholderia mallei (glanders), Burkholderia pseudomalleii (melioidosis), Salmonella typhi (typhoid fever), Rickettsia typhii (epidemic typhus), Rickettsia prowasekii (endemic typhus) and Coxiella burnetii (Q fever), Rhodobacter capsulatus, Chlamydia pneumoniae, Escherichia coli, Shigella dysenteriae, Shigella flexneri, Bacillus cereus, Clostridium botulinum, Coxiella burnetti, Pseudomonas aeruginosa, Legionella pneumophila, Borrelia burgdorferi (Lyme disease), and Vibrio cholerae."
Emphasis mine.
The official position of the public health agencies in the US and other NATO countries is that Lyme disease is rare, difficult to acquire, easily cured with a short course of antibiotics, and almost never causes chronic neurological disablement.
Tens of thousands of patients, their lives blighted by lifelong suffering, beg to disagree. They have organised themselves into campaigns, mostly in the US, but some abroad.

Saturday, 4 December 2010

Lyme Disease Research Database

The above link will take you to a wonderful database for Lyme related information:


New Lyme test for neuro symptons

Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.

As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.

I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me.  I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.

But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?

Evidently, there are neurological manifestations that have non-neurological root causes.  It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges.  The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."

The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.

From their website:

NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.

There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.

Be well.
Think positively.
We can get better.



Comments

Managing chronic Lyme symptoms

If you have chronic Lyme, or post-Lyme symptoms, like I do, it's up to you to raise your awareness and change your behavior if you need to. You can't depend on your doctor to tell you to start an exercise program, give up sugar, stop drinking pop, and never touch a glass a wine. You have to make those decisions yourself. Okay, some doctors may counsel you to exercise, but speaking generally, they won't bother. It's not their job. It is their job to find the pathology and fix it, not to counsel you in preventing chronic illness.

Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.

My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.

Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'

Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.

Dr. Burrascano's bullet list for chronic Lyme:

CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse

* This post was modified by the editor on 11.24.10.

Comments (4)

Have Lyme? Have patience.

Treating for post-Lyme or chronic Lyme infection may be highly controversial in the medical industry, but down here in real life it seems quite clear-cut: You have Lyme. You go to a doctor who treats your Lyme infection. You get better. After a time, you stop taking the antibiotics. You go back to work, to caring for your kids, to everyday life. You may or may not change your diet, your lifestyle, your stress levels. And then sometimes, not always, but sometimes years after the fact, the Lyme infection returns. Is further treatment necessary? Sometimes yes, sometimes no. Sometimes the flare-ups continue and increase in intensity, driving you back to the doctor. Chronic or not, the label is not the essential thing. Treating the flare-up, or the return of the symptoms, is.

My mother raised five rambunctious kids. She tells me she often prayed for guidance. Her favorite prayer was: God, grant me patience, and give it to me RIGHT NOW! Patience is certainly a virtue in healing chronic or post-Lyme disease. But cognitively knowing it and embodying patience in everyday life are two different things.

Here in the mountains of NC, we've just received our first snow. Although I welcome the changing seasons, I find myself getting a tad anxious about the coming winter. It's hard to be patient when you have no control. And of course, who has control over the weather? Last winter was no picnic for people with Lyme. The cold weather poses many more challenges to people who struggle to keep their body temperature at an even keel. Plus, skin conditions that are common with Lyme and co-infections are exacerbated by winter weather, little sun exposure, and snug clothing.

Seeking personal inspiration and practical advice about treating Lyme, I looked back through our posts and conversations with healthy post-Lyme survivors. How do these people remain strong? Are they just made of different stuff? Do they worry, like I do, about tiny signs of Lyme's return, a sore that won't go away, a persistent itchiness. The occasional Lymie surge of dizziness that fades almost as quickly as it comes on.

Then I found Darryl Crews' advice about treating Lyme disease, which I want to share with you. I so appreciate his level-headed approach to treatment. Also, not surprised to see 'patience' right there at the top of the list:

1.  PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2.  MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3.  DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4.  SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.

5.  SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.

6.  EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)


I especially like #4. My treatment routine includes meditation and deep breathing at night and again in the morning. Sleep is indeed essential, and these little habits help create the space for a good night's sleep.

I've come to accept that my approach to treating Lyme is unique, and if it's working, it's the right thing to do. But those dark clouds outside the window, that nippy breeze lifting leaves off the trees. What Lyme treatment approach can fend off cold weather? I'm still treating with teasel tincture and hoping it will help keep my body warm, as it has been doing for several months now. And come to think of it, it's lunchtime. A nice pot of carrot-ginger soup sounds perfect. Ginger is a warming food.

What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.

Friday, 3 December 2010

Erlichiosis - used to be considered in animals only...

Living on a 5 acre smallholding in the Vaal Triangle in South Africa in the 80's and 90' was a really great time of my life.  However, I had no idea how the bug and little animals around me were going to make a profound change to my life.  Due to the tick infestation of the area, even tho my dogs were dipped to prevent ticks, they still managed to pick up some ticks.  Most often they were diagnosed with biliary caused by Ehrlichia.  This was explained to me at the time my our local vet as being the human equivalent of tick bite fever.

Now that I have been diagnosed with Rickettsia conorii, Lyme disease and Q Fever plus co-infections, I have to wonder if it is also possible that Erlichiosis is also part of my problem.  I am not sure if a test is available in SA for Ehrlichia parasites for humans.  I know the vet used to view them in a blood sample from my pets.

Watch the videos on the attached link which also has good information on the symptoms of this condition.

Wednesday, 24 November 2010

Lyme Disease - Misdiagnoses And Medical Dictatorship

QUOTE:

"Hundreds of thousands of sick, disabled and dying people are intentionally being denied proper testing, diagnoses and treatment. Many feel that this is due to the greed of the pharmeceutical companies and perhaps the depopulation goals of the bureaucratic elite. The later isn't such a far fetched idea. Henry Kissenger himself, in his National Security Memorandum, advised the President that there were 13 countries in Africa which were growing much too rapidly, were threatening the availability of certain resources, and that we needed to either decrease the birth rate or increase the death rate. Not too long after this proposal, the World health Organization visited these countries with free smallpox vaccines. Several years later 60% of the people who recieved these shots, presented with the AIDS virus. A similar scenerio took place in NYC. Hepatitis B vaccines were given out free to promiscuous gay men. Soon after, 60% of this population also came down with AIDS."

Chlorella for Health

I had never heard of Chlorella until a few weeks ago.  Then I noticed that more and more of my Lyme friends are talking about using it. It is being touted the worlds most powerful whole-foods.  What the video link and make you own mind up.

Tuesday, 23 November 2010

Bart Yasso, a runner with Lyme, runs the Comrades

Bart Yasso started running to heal himself. He was diagnosed with Lyme disease in 1997 and experiences a lot of damage to the right side of his body. The damage he had didn't allow him to run as much as before.
By 2006 the disease had caused much damage and he suffered paralysis and extensive joint damage as a result of the illness.

The Race of His Life



http://www.runnersworld.com/video/1,8052,s6-21-0-7,00.html?bcpid=2888992001&bclid=82523976001&bctid=80117446001

He took on the challenge of the Comrades. Fifty six miles through the country side of South Africa.  It is known as the Greatest Race in the World.  The race by Bart and his fellow countryman were to help raise the plight of the Aids Orphans in South Africa.
http://www.runnersworld.com/video/1,8052,s6-21-0-7,00.html?cpid=2888992001&bclid=82523976001&bctid=80117446001



Bart in Africa: Pietermaritzburg - The Race
http://www.runnersworld.com/video/1,8052,s6-21-0-7,00.html?bcpid=2888992001&bclid=82523976001&bctid=80117446001

Ileocecal Valve and the Cecum

"The ileocecal valve is a sphincter muscle located on the right side of the body where the small and large intestines join up. This is right in the same area as the appendix by the way. The appendix is actually located in the cecum."

Thursday, 18 November 2010

Antihelmintics in the treatment of Lyme disease (click for more info)

Parasites are likely to infect most everyone. It is estimated that as many as 85% of the world’s population is infected with one parasite or another. In fact, it is highly likely that you are infected by anyone or more of than over 1000 known parasites which can live in your body at any one time. 


It’s believed by some scientists that parasitic infection is more responsible for diseases like cancer, diabetes and liver dysfunction and others than traditionally accepted. Parasitic infections accelerate HIV to full blown AIDS. 


Parasites are difficult to test for, and often present symptomatic characteristics of other diseases, like flu and colds, migraine headaches, cysts, neurological disorders, anemia, chronic fatigue and general tiredness, frequent constipation, chronic weight problems, iron deficiency, etc. 

Mostly we become infected with parasites from our food and water sources. Undercooked meat (beef, pork, poultry) and undercooked or raw seafood (raw oysters, sushi) are the most common vectors, as well as unwashed fruits and vegetables. Drinking contaminated water and swimming in water as found in lakes and rivers will expose us to parasites as well. 

Parasites can also be transmitted by human contact alone, through drinking from the same glass, eating from the same utensils, kissing, sneezing and other exchanges of body fluids. Animals (pets and their fleas/mites/ticks) are also common carriers which transmit the parasite to human hosts. Simply petting and grooming our pets can facilitate infection, the parasites’ eggs passing from their fur to our hands, nose and mouth. 


Some parasites (eg. pinworms) can even be transmitted through the air and are in the dust we breath. It’s likely, therefore, that those who live in the same household will all have the same parasitic infections, whether they are currently symptomatic or not.