Monday, October 29, 2012

Lyme state report

Well then.
All is still well (unwell?) In the state of my body with Lyme, Bartonella and Babesia, says dr. McS.
I'm doing better for the most part, but she thinks the Babesia is causing the sweats, so wants to keep me on the Malarone (malaria meds, 4 a day).
The Bartonella is causing the bruising that just started again all over the legs, the stabbing headaches and both Babs and Bart might cause the insomnia.
She also thinks there's a bunch of protozoa on the march ---

She wants me to try going on Tinidazole - if not able to get that, then back on Metrodinazole.
It has been making me sick to the point of vomiting, lack of appetite and exhaustion, though. So - couldn't find Tinidazole, I would have to order and then drive through to Niagara Falls, NY sometime this week to go pick up. Lots of driving with this disease, mostly around the bend!
Rest of the prescriptions: She'll be hitting the bugs hard with Sulfa and Mepron again, along with Malarone (vivid dreams, here I come again! Hallucinations galore on those two last time.) Also ended in the wheelchair last summer while on that combo, with lots of hip pain which made it hard to even walk a few feet.
I have a prescription for Alinia for future use if needed.
Bab2 is the herbal detox I have to keep for the Alinia or can start using now, but it is very strong.
Herxes will be strong.
With the big Frankenstorm approaching and all sorts of systems on the way, it might be an interesting few days for me.
She has people who get horrible die-offs with full moon and high tides, storms and pressure systems. All the bugs come out in force, she says.
Walking out of the office after my appointment, another Lymie was waiting, of course. They're from the town next to ours, the parents came to our Lyme walk in May. Mariah and I got our picture taken. She looks exhausted, poor girl. What a dreadful disease this is when it gets its claws into a body! Things just have to change, that's for sure.
Out with a fistful of prescriptions, to Target to fill some - and several hundred dollars later out with only two bottles. The rest will have to be filled.
But - we tried the Green Mountain coffee as Johanne recommended, as well as some peach frozen yogurt - both utterly delicious!
Driving back through the top of New York now on the way back home, we stopped for gas (petrol) and saw they were selling green mountain coffee too so we had to get a refill! The lady's name is Marlene as well and everyone who came in to pay, greeted her by name - which made me jump!
No rain so far, but it is all cloudy and the wind is picking up. Crossing the bridge back through customs into Canada, the water far below looks cold and with white caps as the wind is starting to whip.
I tried to get some of the pictures from the Nikon to the Blackberry to share - but no go through the sulking tablet. There are some funny ones! Still several hours of driving left, though. But so far so good, and not nearly as tired (yet) as the last time when we came back!
Thanks for all the messages, fun and facebook notes on the drive yesterday. It helped me relax a whole heap to chuckle through them.

Sent on the TELUS Mobility network with BlackBerry

Friday, October 26, 2012

Successful meeting with Member of Parliament

Another exciting day ... Joe and I just met with the Honourable David Tilson, MP for Caledon-Dufferin.
We found him supportive, but careful.

He was gracious and friendly -- and like most people horrified to learn more about Lyme Disease. I appreciated the fact that he apologized for asking basic questions, and for not knowing more - but nobody can know everything, right? He has met some constituents before, mostly in informal settings, who spoke about Lyme Disease, so he knows it is in the region.

Joe, David Tilson and Marlene
He will read and investigate some more. His big question was, "What can the Federal government do to help or fix this issue?"

He also asked the picture of the three of us to be sent to his office, for inclusion in his next newsletter.

There are some other points we're working on and will report back in the near future.
So grateful for the time and the ear!

Thursday, October 25, 2012

Delegate to the Region

As mentioned in the last sentence of the post showing all the ticks found in a Kingston backyard (The ticks of our lives), today was the delegation to the Region of Peel Council. Joe went with me; his support has been and is invaluable. Without him, many of the connections and introductions might not have happened. 
Joe and I in 2011

Delegation went very well. It was started by referring to the ticks Wendy collected in her garden in Kingston --- proof they are here! One of the references made, was about Health Canada's latest newsletter as published on their site. Basically it said that the tests "have some limitations" and doctors should be encouraged to use them as support for a clinical diagnosis. Referred to a presentation at the Toronto and Region Conservation Authority this September. The TRCA is the largest landowner in the Toronto region, and will start information on Lyme disease and ticks to their employees and visitor information systems. That's a great start, but we also need to get information to children, since they are at the highest risk. We need to get to schools, Scouts and Guides. I used a quote from Janet Sperling, one of the authors of a newly printed paper in the Open Neurology Journal, that "if we can put people back to work (even part time) it's better for everyone. People with Lyme want to be working and it's a reasonable thing if we can first treat the Lyme!"

After the presentation, there were several questions - good ones! - with great suggestions. There was a connection to get something presented to the FCM (Federation of Canadian Municipalities) and AMO (Association of Municipalities Ontario). On November 7 we should hear if we are invited to the ROMA conference in February. 

Some links referred to or pieces of documents used

When I was asked the first time to talk to a group (Probus) I was very nervous and not at all feeling like the right person for the job! I've never been a public speaker; much better to support those who do the speaking! But they were gracious and supportive. By now it has become something I'm passionate about, feeling that if only one person hears the message at every talk, gets information and can protect or help a child or loved one, it was worth it. Today, it happened almost immediately. 

The Council meetings are on a local TV channel in real time, but there are no nerve wracking TV cameras to be seen. I was aware of the fact, but didn't really think about that during the delegation. However, barely an hour after the presentation, as Joe and I finished debriefing over a cup of Timmies, an email came in. Pina wrote:

"I caught the later part of your deputation at the Regional Council meeting this morning.  I have been feeling unwell for the last 2yrs and have been desperately trying to figure out, what I now call 'the mystery disease'.  Last year I googled my symptoms and lyme disease caught my attention. I proceeded to research the disease and discovered that the testing available in Canada is limited and not accurate. I emailed the Region as well as other Canadian health services and received no help. In a desperate feat I asked my family DR to test me for lyme, knowing that the test was a waste of time.  Test came back negative, of course.
I guess what I am asking is, where can I get properly testing and what avenues are available to me.  Any help would be greatly and desperately appreciated."

We swapped emails and then I sent her my phone number. We spent quite a while talking. She was home with the flu today and was just channel hopping when she caught the Council meeting and mention of Lyme Disease. I dropped everything to take a test kit to her sister, and to share some information.

THAT is what makes it all worth while. That people who are sick, desperate, maybe even without hope and, like most of us finally diagnosed Lymies, thinking they're losing their minds, can find some information, someone to talk to, and support from someone who can say, "Yes, I understand - me too!" 

VIDEO LINK ~~The video of today's council meeting is online, on THIS LINK - from about 32:45 minutes in if you move the starting point forward. We were second on the agenda if anyone wants to try and see a bit. 

To see video of the delegation, click the link above the picture

Tuesday, October 23, 2012

The ticks of our lives

Dr. Robbin Lindsay, a research scientist with the Public Health Agency of Canada who specializes in zoonotic diseases, says the populations of the blacklegged ticks that carry Lyme disease (sometimes called the deer tick) are growing. 
[Marlene's note: Full article is HERE but the link they have to his video doesn't work any more. The link below gives the text of his video interview, though.]

Lindsay says it appears that while ticks are spreading, the prevalence of Borrelia burgdorferi is still low. In some areas of Canada between 10 and 50 percent of blacklegged ticks are now carrying Lyme bacteria. Read more

Talking to Wendy from Kingston about all the exciting things happening on the Lyme front. For instance, there is a newly created National Lyme and Associated Diseases group in Canada! The domain name has been registered, but the website isn't up yet. Soon, though, soon. 

However, that's not what this blog post is about. Wendy, who has been sick with Lyme disease for 17 years, has been checking outside her house for ticks. Today she dragged a white cloth outside for just ten minutes .... and this is the "harvest" she collected below! 

She has the fabric inside double ziplock bags to be sure they can't escape. Within minutes the ticks started mating inside the baggies! Clearly nothing puts them off and nothing stresses them. 

Wendy took a picture with a Canadian coin (small 10c) to show how tiny the ticks are. And these are adults - you can at least see them where the nymphs are so tiny that they are hard to spot. 

This is scary stuff. These ticks were found in a residential area, in a back yard of an ordinary house.

But, just to freak out some people --- below is a picture I took in 1996 when we were still living in South Africa. The hand belongs to my then 6 year old son, Theo. We were walking around the school area where they had some of the typical large tortoises. The ones around there were around 50 pounds in weight or so and can live for 100 years or longer. Ticks love to bite them. They hide themselves in the neck fold, where the poor tortoises can't reach to get them off. The ticks drink their fill and then drop off the host. This is what Theo picked up - a resting tick, waiting to digest his meal before finding another host. 

What do you think of that size tick then?

NEWS: On Thursday, I have to delegate to the Regional Councillors about Lyme disease. Hope to update as soon as it is done. 

Friday, October 19, 2012

List of 100

Too busy to post much, but I want to talk about books found and read, about a conference attended and skills picked up, about the upcoming visit to the Lyme doctor, about the paper published about Lyme Disease and how important it is to keep pushing for early diagnosis, and to mention the upcoming delegation to the Region next week .... but .... work gets in the way. So ....

Hovering above a manatee
Found this list on the blog of my friend John -- the idea is to see how many of these you have done! Those you have, you make bold and those you haven't you leave alone. I'm going to be complicated and use italics for some still on my Bucket list or just got close to! Here goes:

** UPDATE: It wouldn't show the non-bold entries, so changed to have the ones done, be strike through. The ones not done, are left alone. Sometimes too much technology thinks it knows what the author wants! 

1. Started your own blog

2. Slept under the stars

Played in a band - only once!

4. Visited Hawaii

5. Watched a meteor shower

Given more than you can afford to charity

Been to Disneyland

Climbed a mountain

Held a praying mantis

Sang a solo

Bungee jumped - we did Sky Flying and Parasailing - does that
count? Pictures

Visited Paris

Watched a lightning storm at sea

Taught yourself an art from scratch

15. Adopted a child

Had food poisoning

Walked to the top of the Statue of Liberty

Grown your own vegetables

Seen the Mona Lisa in France - chose to go on a private tour of Paris rather than going inside the Louvre. Did have lunch inside the Louvre, though, several times, haha!

20. Slept on an overnight train

21. Had a pillow fight

Hitch hiked

23. Taken a sick day when you’re not ill - years ago!

24. Built a snow fort

25. Held a lamb

Gone skinny dipping

Run a Marathon

28. Ridden in a gondola in Venice

Seen a total eclipse (lunar)

30. Watched a sunrise or sunset

Hit a home run

32. Been on a cruise - not an official long one, but several ones in Toronto & Argentina

Seen Niagara Falls in person

Visited the birthplace of your ancestors

Seen an Amish community

Taught yourself a new language - well, took German in school and used to be fluent. Does that count?

37. Had enough money to be truly satisfied - yes, I am. We have enough.

Seen the Leaning Tower of Pisa in person

Gone rock climbing

Seen Michelangelo’s David

1. Sung karaoke

Seen Old Faithful geyser erupt

Bought a stranger a meal at a restaurant

Visited Africa

Walked on a beach by moonlight

Been transported in an ambulance

Had your portrait painted

48. Gone deep sea fishing

Seen the Sistine Chapel in person

Been to the top of the Eiffel Tower in Paris - the line was too long, so we stood in the shade during the day and at night from the Seine

51. Gone scuba diving

Kissed in the rain

Played in the mud

Gone to a drive-in theater

Been in a movie

Visited the Great Wall of China

Started a business

Taken a martial arts class

Visited Russia

Served at a soup kitchen

Swam with dolphins or manatees

Gone whale watching

Got flowers for no reason

Donated blood, platelets or plasma

Gone sky diving - it is on my Bucket List!

Visited a Nazi Concentration Camp

Bounced a check - another achievement!

68. Flown in a helicopter

69. Saved a favorite childhood toy

Visited the Lincoln Memorial in Washington DC

Eaten Caviar

Pieced a quilt

Stood in Times Square

Toured the Everglades

Been fired from a job - it was 1985 in South Africa, economic decline, I was the youngest on staff, so ...

76. Seen the Changing of the Guards in London

Broken a bone

Been on a speeding motorcycle

Seen the Grand Canyon in person

Published a book - See one online, Tiny Tales

81. Visited the Vatican

82. Bought a brand new car

Walked in Jerusalem

Had your picture in the newspaper

Kissed a stranger at midnight on New Year's Eve

Visited the White House

Killed and prepared an animal for eating - antelope for biltong, also made our own wors, etc.

88. Had chickenpox

Saved someone’s life

Sat on a jury

Met someone famous

Joined a book club

Lost a loved one

94. Had a baby

Seen the Alamo in person

Swam in the Great Salt Lake - That's one of my dreams, as on Pinterest!

97. Been involved in a law suit

98. Created a new recipe from scratch

Been stung by a bee

Been told you were going to die

Your turn! Enjoy!!!

Thursday, October 04, 2012

Please help Lymies by voting!

Aviva Insurance has a contest and is donating money to non-profit causes.  The Canadian Lyme Group has registered the new Vancouver Chronic Disease Clinic  (was called the BC Lyme Research Clinic) as a good cause and they want our help!   If we generate a lot of votes for this clinic, it is going to mean as much as $150,000 for the clinic!  
1.  Go to  It tells you on that page that you need to register but that is easy to do.  They only want your email address, and you make up a screen name and password. You can also register with your Facebook. 
You earn 15 votes by registering (but can only use one vote per day).   Make a note to vote each day until October 15th.  Then, we see if go to a second round of voting. 

More info on Facebook:
Right now we are at a lowly 693 votes, please vote and ask everyone you know to register and vote daily.  Thanks.

Well over 1 million Canadians suffer from chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivities and Lyme disease and do not get adequate care and treatments by our health care system. 

A new Complex Chronic Diseases Clinic will open in 2013 in Vancouver to address these diseases and provide the support that its sufferers deserve. 

Through this project, we want to help fund  medical equipment needed in order to properly diagnose these patients, get the care they need and train staff in performing these tests according to the standards of the field.

The first testing equipment needed is a tilt table, with cardio-vascular monitoring- and blood pressure machine. This helps physicians understanding the extent of autonomic nervous system dysfunction called Neurally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia Syndrome (POTS). 

Secondly, a new protocol called "Stevens' protocol" consist of a 2 consecutive days VO2 Max exercise test, tests cardio-vascular endurance and tests for the a pathology unique of patients with myalgic encephalomyelitis. A special exercise bike is needed, along with cardio vascular monitors, including an oxygen and carbon monoxide sensor is needed. 

Holter monitors would be great for patients to get their hearts monitors for 24 hour testing. 

Proper training will be needed for professionals to use these monitors properly. 

These 2 tests provide objective proof of illness which has been lacking in the past. Moreover patients will also need Holter monitors. 

Monday, October 01, 2012

Autoimmune defective family of women

Been thinking about how to word this post. Don't want to be melodramatic, only state some facts which occurred. But in order to do so, I need to bring up a little genealogy. Things come in threes, they say, and the third occurred last week.

My dad had an older brother. Both brothers were married twice - and both their first wives were called Martie or Marthie. That just by the way for interest's sake. Both brothers had one girl as first-born child. Cousin Annatjie and I were great friends as young children. I remember clearly how the two of us shared a bubble bath, standing and laughing uproariously while working the water with our feet to create more bubbles. I was not used to such luxury ... they brought it along when they came to visit us once. At that point, tannie Marthie was married to her second husband who raised Annatjie as his own.

Then we lost touch - never saw each other again until briefly in our early twenties, because our families drifted apart or something. I never forgot her and tried for years to find her again. Succeeded somewhere in 2008, I think. Interestingly enough -- she is married to a Theo and her only son is called Jaco. (My two sons are named Jaco and Theo.)

The only family picture I have of my grandparents, my dad and his older brother. Must have been taken around 1944 or 1945, by a street photographer.
When I was 12 or 13, my parents were divorced. My dad met another woman afterwards and they were married. They have four children - one girl and three boys. The girl is once again the first born. She has never met Annatjie as far as I know.

 All three of us suffer from auto-immune diseases. We are the only girls in this branch of the family.

I think Annatjie's half brother (same dad, different mother) is fine, and so are my three half-brothers, Anneke's full brothers. My only full brother died of Hodgkin's lymphoma 5 days before he turned 11, way back in 1976 before the disease could be treated. [I just did a search and found the following: "Immunological abnormalities have been described in patients with Hodgkin's disease ... can also present as immune dysregulation and autoimmune disease." ]

Cousin Annatjie (left) and sister Anneke (right)
Annatjie was just diagnosed with Bullous Pemphigoid.

The Medical Dictionary says: "bullous pemphigoid - an autoimmune disease of skin and oral mucosa with vesicles, bullae and ulcerations; occurs rarely in dogs and humans."

Bullous pemphigoid is an autoimmune disorder that results in the formation of bullae, most often in the groin, axillae, and intertriginous areas. (Intertriginous is a medical term used to define an area where two skin areas may touch or rub together.)
Bullae: More than one bulla, a bulla being a blister more than 5 mm (about 3/16 inch) in diameter with thin walls that is full of fluid.

She is in pain, she is upset, worried and concerned.  I looked it up and found some pictures like this one. My heart goes out to you, Annatjie, while you deal with this diagnosis!

Blisters on the arm and skin sloughed off

Anneke woke up one morning some years ago and couldn't get out of bed, due to absolutely severe and numbing pain in her legs. Tests and doctors again. Finally she was diagnosed with Rheumatoid Arthritis. It became so bad that she would sit in tears, her parents were frantic and concerned, she had to get special permission for heavy-duty and expensive medication which could cause all sorts of other issues. She is a medical rep, so she knows what the medication can do and cause. Stress causes the condition to kick up a notch, so she has to watch it.

Wikipedia says:
Rheumatoid arthritis (RA) is a chronic, systemic inflammatory disorder that may affect many tissues and organs, but principally attacks flexible (synovial) joints. The process involves an inflammatory response of the capsule around the joints (synovium) secondary to swelling (hyperplasia) of synovial cells, excess synovial fluid, and the development of fibrous tissue (pannus) in the synovium. The pathology of the disease process often leads to the destruction of articular cartilage and ankylosis (fusion) of the joints. Rheumatoid arthritis can also produce diffuse inflammation in the lungs, membrane around the heart (pericardium), the membranes of the lung (pleura), and white of the eye (sclera), and also nodular lesions, most common in subcutaneous tissue. Although the cause of rheumatoid arthritis is unknown, autoimmunity plays a pivotal role in both its chronicity and progression, and RA is considered a systemic autoimmune disease.

About 1% of the world's population is afflicted by rheumatoid arthritis, women three times more often than men.

My story - obviously longer since I lived it. Please know this is not a complaining or a "poor me" post, only a stating of some facts. Wondering about all three of us, the only three girl children of these two brothers,  having these conditions.

When I was 18, I suddenly developed allergic reactions. I kept telling everyone it is an allergy to metal but got laughed at. Who is allergic to metal? This continued for years. I was diagnosed with all sorts of things, including an allergy to Tartrazine - the stuff used to make cheese and food yellow. We started watching labels and everything else, but at that point in South Africa, Tartrazine was in everything from breakfast foods to candy/sweets, canned goods, snack foods, medication and more. I saw medical doctors, dermatologists, homeopaths and chiropractors. No luck.

My body was more and more broken down, so much so that I couldn't peel a potato or slice a tomato without having the skin on my hands and fingers just slip off or split open. I had no cuticles left around my nails. Trying to control the allergic reactions, my doctor would give me cortisone injections as well as Vitamin B injections from time to time.

Hives would form all over my body, even inside the eyelids, inside the ears, and all soft parts of the body. I would wake my husband at night from scratching so much and would have the skin almost slough off in parts. A few times my breathing was affected.

Here's a picture of what it looked like, more often than not, but mostly I could hide it under my clothes and consciously refrain from scratching while awake.

After more than 20 years of this, I finally had a dermatologist willing to test me for allergies. He said he had never seen such a reaction on the patch test, specifically to nickel and cobalt. But by then my body was very depleted from all these things ravaging it, including Menorrhagia every month which I thought was normal. We didn't discuss our periods.

Before we came to Canada, I had the fillings in my teeth removed and replaced with white, as well as had endometrial ablation. The gynecologist said he had never seen such a thick uterine lining and wanted to do the procedure again the next year. That helped since my period became light and "normal" afterwards so my body had more time to recuperate.

In 1997 or 1998, after coming to Canada, I was diagnosed with arthritis. In 2005 I was diagnosed with Rheumatoid Arthritis. It was controllable and not too bad. A friend thought that the years of allergic issues caused the RA to kick in.

I considered myself healthy, happy and with no major problems, especially thanks to a high pain threshold. 

And then, in 2007 - the sick tick bit me here in Ontario. Everything broke down - had to scoot upstairs using hands and sitting on my bum since the leg and hip pain became intolerable. Ankle started dragging and I fell off stairs when trying to walk down. Woke up blind on the left side several times. Lost hearing from time to time. Developed severe sensitivity to light and sound. All sorts of infections, debilitating pain - you know, the old Lyme Disease list of stuff. But it took three years to diagnose. Cue the Lyme Disease music!

Lyme made the RA worse, of course. One of the diagnoses was in fact that it was RA causing my swallowing muscles to degenerate and I was told I would have to probably be on breathing and feeding tubes by my mid-fifties. That was fun to hear. Not.

Oh, a few months ago, as part of my Lyme Disease treatment, I was tested for metal and was told my lead levels are high and should be addressed. Haven't done that yet.

As part of my Lyme Disease treatment, some of the cocktails of medication created such a strong and severe reaction that a doctor told me that "You WILL die." He was afraid of Stevens–Johnson syndrome (SJS) kicking in. I had to drop all medications. So -- I went out for my favourite treat of Dim Sum with friends to have a great day. Might as well go out with a bang and with friends, right?

"SJS and toxic epidermal necrolysis (TEN) are two forms of a life-threatening skin condition, in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex that affects the skin and the mucous membranes. The majority of cases are idiopathic (without a known cause). The main known cause is certain medications, followed by infections and, rarely, cancers."

Some research:
"Bullous pemphigoid is the most common autoimmune blistering skin diseases. The significance of the association of bullous pemphigoid with other autoimmune diseases is still unknown. There have been reports of an association with many autoimmune skin diseases."

"In 1997, RA accounted for 22% of all deaths due to arthritis and other rheumatic conditions."

Lyme Disease is supposed to be "rare" since Canada only reported 100 cases per year. That while across the border, tens of thousands of people are diagnosed every year.

My and Anneke's dad seems to be fine. He beat prostate cancer and his levels are now below normal.
His older brother, Annatjie's father, died of aortic aneurysm. He also had adult diabetes in his later years.
Our grandmother, their mother, lived to be 80. Anneke and I suspect that she might have suffered from RA or related conditions, but we're not sure. Where else could it have come from?

 Now I wonder, what do these conditions mean for our children? I have two boys, Annatjie has two girls, a son and a granddaughter, and Anneke was just married a few months ago.

I'm talking to family members found through doing our genealogy over the last 10 years or so, trying to find out if there might be  any more of these cases. It might help someone else, knowing that they should be on the lookout for their own bodies waiting to eat them!

Other stories to read:

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