Friday, November 23, 2012

The Farmers and the Guides

This has been a very busy week! In the first place, there were several days of Lyme disease awareness events, and in the second place, I'm working on a project with my daughter-in-law. We're both very excited about it, but won't talk until it is done!


The biggest event was as mentioned in a previous blog post, that Joe managed to get us a table to share information about Lyme Disease at the OFA convention [Ontario Federation of Agriculture], which was held from Sunday to Tuesday near the Toronto airport. We went down on Sunday afternoon to set up our display. We had a great position where people could see us.

There was nowhere to hang our banners, so we 'borrowed' a luggage trolley and tied the vertical banner. It worked, and after the convention, the cleanup guys were happy that there was a trolley ready for use! 

That afternoon kept us hopping as farmers came by to pick up brochures, ask questions, share tales and stories of ticks found and bites happening. Most mentioned that the ticks have been out since February this year, which confirmed what we have found out during the summer events we had.

Many signed the petition (see link at the top of this blog page) to ask for a national Lyme disease strategy. We need to get more of the MPs [Members of Parliament] on board! People took note of the blog address and several promised to get on board for the Awareness events in May.

All things considered, it was an extremely successful event. The OFA will also publish links to their site. We owe them a great thank you, but also needed to get the word out to farmers so that they can protect themselves in order to feed the rest of us!


 A friend asked if I would speak to the Trefoil Guild. Of course I said yes - no passing up on an opportunity to share information, answer questions and hand out brochures! But what is the Trefoil Guild, you ask? I had to go look too!

From Wikipedia: "Adult members over the age of 30 have the option of becoming Trefoil Guild members. A woman can opt to be a member of the Trefoil Guild and participate in other roles within the organization. Trefoil Guild groups usually meet once or twice a month, and often participate in various Guiding events. Many Trefoil Guild members are senior citizens, some of whom have decades of Guiding experience."
Happy birthday!

There were about twenty ladies on Tuesday evening, from different guilds. They were wonderfully warm, accepting and interested. They were also suitably horrified about the lack of treatment. Many super connections were made and promises to be there to help if we should need them. I'm so grateful for the opportunities!

Friend Jean and her friend Rita had a birthday earlier in the month, so candle-lit cupcakes and a bunch of flowers were delivered! I didn't have my big camera there (shock! gasp!) but grabbed a cell picture.

Still feeling a little queasy every day, but hopefully things are settling. I'm only taking the Tinidazole three days on and three days off instead of two weeks on and two weeks off. The Bab-2 is twice a day, along with all the other meds plus several supplements.

Wednesday I had to work to make up for Monday when we were at the OFA. That evening I had another volunteer group meeting in a nearby village, but kept yawning through it! Good thing I'm the recording member and had to keep notes, or else I might have fallen off my chair. Fell into bed and spent Thursday mostly in a daze, trying to recover before meeting another volunteer group to discuss the 2013 Fall Fair, and then taking out our married children for sushi.

Please take a look at the buttons above on this blog, to view other pages - the Petition, and especially the Worldwide Protest pages. We now have 18 countries joining in and more to follow!

Friday, November 16, 2012

A hard choice

Been thinking about doing this post for 24 hours now. But maybe it would help someone.

Arno sorting out my meds for 10 days
I've started the new protocol of meds a few days ago. Adding the Tinidazole three or four days ago. The second day I felt very funny - the nausea, headachy, just not right feeling.  Tried to rest on Wednesday and felt better in the evening.

Then came Thursday (yesterday), which was an especially difficult day. As all Lymies know, we have to make choices all the time: Go out or rest? Do the laundry or cook a meal? Visit with friends or rest up in order to go grocery shopping?

Then there are the harder choices. Stay on in a job that has become too taxing because you need the money to help pay for meds or resign so you can have more rest?
Pay for treatment or take a vacation with your spouse?

Yesterday I had to make that choice about a pet. I know in the scope of losing a house, a car, a job, or other things that's only small potatoes, but pets have always been part of our lives.

I had to take one of our three cats, Essie, to the vet. She has had a sort of coughing or wheezing for a while, but didn't seem to be in discomfort. Eating, playing, jumping and doing everything she always did, despite being 9 years old already. She is the one who has adopted me fully and thinks she owns me.

The picture to the right is of her grabbing my finger to try and convince me to put down the laptop so she can sleep on my legs!

The vet has known us for years and I trust him. While he was talking, I felt the nausea rising. Looking around in the small room, I noticed a sink in the corner and thought if I can't control it, I'll push the vet out of the way and storm to the corner. As a vet, he's used to all sorts of things, I'm sure! He must have noticed me feeling weird, though. When I said I might have to storm past him because I'm on treatment for Lyme disease, he said there's a washroom just around the corner.

I barely made it. Yuck. You know, the whole thing. Heaving way past the point when the stomach contents have emptied completely, the sweaty, shaky, dishrag-pale image of self that's left.

Back in the office, it was explained that it could be a number of things - asthma, worms (they are all indoor cats), kennel cough and more. X-rays and bloodwork required. Cost of over $750 (over R5,000 in South African money). That's all diagnostic, then we haven't yet started on the meds.

I was honest and said we can't afford it. It is a choice between my treatment and a pet's. Essie is not in discomfort. The vet was very sympathetic. He agreed that she's not in discomfort and that she was in good health otherwise. He told me what to watch out for - one of the first would be when the other cats start picking on her instead of her being the queen of the household. He said there's no reason why she couldn't live to be 16 even with this condition, unless of course it becomes obvious that she's in pain.

Then he launched into the fact that the Lyme screening is such a simple test for dogs, that vets are aware and how can it be that human doctors just ignore it? He said he has been toying with the idea to give a talk to his clients and I said he must just say the word; I'd help him out if he needs the human aspect.

Last night I didn't want to take my meds. Lived on dry crackers and apples all day. Oh yes and some ginger cookies just to get something in (yes I know I'm supposed to avoid gluten).

This morning after taking the meds I drove to work with double plastic bags on the seat next to me. The queasy feeling is till there, but I haven't gotten sick yet. But then - the levels of whatever of the cocktail that caused the nausea is lower in my blood than it was yesterday morning. Will see how it goes the rest of the day and tomorrow morning. I have a women's breakfast in the morning, but they're all aware and there's a washroom nearby, haha!

Essie has forgiven me for bundling her in the carry cage. When it came time for bed last night, she cuddled right up to my side, exposing her tummy to be rubbed.  Ah! A purring cat! Nothing beats that.
Last year, with the severe hip and back pain, my sweet husband bought us a new pillow-top bed. He said I tossed and turned all night. The new bed is so high that I need a step stool to get on it. 
With the hurting hips I can't just get on the bed. So one Saturday night I was totally exhausted after a day in the sun with taking pictures of our friendly church baseball games and woke up during the night again with  throbbing pain in the left thigh, deep in the bone. Felt a weight on me and Essie was right there, purring loudly. That while Dusty was on the step stool in front of the bed, looking right at me. She has never done that. Essie especially seems to know when I'm in pain and then comes very close to me to snuggle and purr. Cats know!

Adventures in Lymeland continues, indeed.

Here are more pictures of our pet collection if you want to see.

Tuesday, November 13, 2012

The burglary of my self-being

A blog post by a fellow Lymie, Kevin, about his suicidal thoughts made me think I should post this, in case other Lymies are reading my blog, just so they won't feel alone if they have similar thoughts. Suicide is, after all, the leading cause of death among Lymies so we have to stand strong!

I'm sitting in bed, fighting nausea and the shakes after adding the Tinidazole to the protocol today. Might as well post to the blog!

So here goes:
(written on June 22, 2011, but then only shared with a few very close friends until now. The title of this blog post comes from a comment by Nyree, a friend in Sweden.)

...... I tried to write this down last night, taking about 2 hours or more.

Several of my fellow Lymies are in wheelchairs or use canes. Others get uncontrollable ticks and large movements of head or limbs. Other people notice. The disease has stolen their mobility, their balance, and their wholeness. They no longer fit the "normal" or blended profile. Something is visibly off. They can explain about the disease and those who care to listen and take note, can easily see the ravages the disease left on the body. They can ask for help and get it.

This disease takes a heavy toll on everything, including family life, friendships, the economy and most of all, the self image of the victim.

The last two or three weeks, I've been trying to communicate my feelings to husband and friends. But they don't seem to get it.  And I don't know how else to explain without sounding whiny and even more pathetic. The guilt doesn't help. There are so many others who have it worse, are battling cancer, loss of limbs, loss of eyesight or hearing and having to adapt in a changed reality. I'm not trying to create sympathy or pity.

A few weeks ago, a large, complex project was put in front of us to quote on. I looked things over and knew I was unequipped to do the job. Even with help, tutorials, studies and all sorts of help, I knew and tried to explain that I was out of my depth and that we shouldn't accept the job.

The men in their infinite wisdom thought that pushing me harder will create job satisfaction and create a sense of my being needed. I was hoping and praying we wouldn't get the job. But we did.

Even during the first sit-down to discuss the outline of the project with the client, I said several times that I could not do it, the time line is not enough to master the three difficult, involved programs as would be needed to do the job properly. Granted, if it could be done, it would be kudos for the company as well as bragging rights.

I've spent days trying to learn the ins and outs of these programs (Photoshop, Dreamweaver, Joomla, PHP). While I managed the first part in PS reasonably enough, that was only the start. But now the slightest thing takes hours to try and understand, then to execute and by the time I get to the second part, I have to go over the first part again because it is somehow gone from my brain. It is like frying eggs over and over again and losing them between slipping from the pan to the plate. Before, I could read something and recall it effortlessly, often complete with a "picture" of the page in my mind with page numbers, pictures and such intact.

The stress of fighting my sick brain is becoming unbearable. Trying to keep up the pretense of "all is well", trying to hold it together while inside I'm screaming, angry, afraid, frustrated, emotionally drained and pawing through reams of sentences that make no sense after reading several times.

The sudden, unexplained loss of a dear friendship during the last month didn't help and made me feel even more of a loser and a failure.

I find myself thinking almost constant thoughts of self-destruction, wondering if it is all worth it and just wanting to curl up and stay in bed, only getting up to do the same things over and over again. Even cooking is a challenge. I can't follow a recipe any more, even though I've been cooking since age 7.

Cold and calculated thoughts of suicide are taking over my days and thoughts. When I was driving to the hospital for allergy testing along a very busy highway, I had to fight the impulse to steer the car into what should be termed a "fatal single-car crash". If I should do that, with everyone knowing about my fear of driving on that particular highway, who would know it wasn't an accident?

That's one example. There were many more but I won't get graphic. I didn't tell anyone. This happened over several days in different places, clearly seeing different scenarios. Sometimes I pulled off the road, got out, went to a Tim Hortons or just looked at the area around me while trying to breathe deeply, trying to get pleasure in the views I love so much in this adopted country of ours. I had to fight constantly by holding up  thoughts of my supportive husband and sons.

Finally I realized I was in deep trouble and went to talk to my doctor. At first he thought I was talking about minor thoughts, but then he started asking more probing questions and I could see his face and attitude change. When I burst into uncontrollable tears and described episodes of high anxiety, difficulty breathing and inability to focus, he became very serious. He has known me very well for years, and before Lyme disease was diagnosed, I saw him almost weekly with all the various ailments. I've always been very positive and am not an anxious person.

My doctor believed me and prescribed something to help, despite knowing my aversion to all these mind-altering drugs. He told me I needed help and being aware of the situation is not enough. He also told me that he would make arrangements so that I could call for immediate help if I get to a place or situation where the suicidal thoughts threaten to overcome me.

Trying to write down these thoughts or stories is not easy. I keep wandering away from the laptop, doing something else, losing the train of thought and fighting the rushing of tears at the uselessness of it all.

There was a time when I could write stories or read things, retain the information, recall it effortlessly, and understand the logical steps to get a task done.

I've lost that. And nobody seems to understand the depth of that loss. They try to assure me that it is not that bad, that they haven't noticed a change.

If I could put my brain in a wheelchair and just let it heal for a while, visible to others, getting the help needed, there might be hope again. But right now, I have a brain injury and am coping with loss, grief, heartache, pain, sadness and emotional distress.

How will they understand without being inside my head? How can I explain to others so that I could have the time to heal a little, however long it takes?

Sunday, November 11, 2012

So many new Lyme cases ... a million in Germany?

A million people reported with Lyme Disease in Germany in 2012? Out of a population of 82 million, that means more than 1 in every 100 people! I was totally in shock reading those figures, and will give more below. This blog post might not make much step-by-step sense, but I wanted to share the information with more links for those who want to research more.

Dr. MacDonald (picture from ILADS)
Dr. Alan MacDonald, one of the speakers at the Boston conference of the International Lyme and Associated Diseases Society (ILADS) earlier this month, quoted this astounding figure. He writes - and I quote with his bold, etc. unchanged, but I fixed one typo:
"The German Borreliosis Society and Dr Armin Schwartzbach have told me that One Million New cases of Lyme borreliosis were recorded for residents of Germany, based on public data released from Payments by German Health insurance companies for calendar year 2012.
ESTIMATES for China are between 20,000 to 30,000 new cases of Lyme Borreliosiis annually [ with statements that the true numbers of Chinese cases is ,like in the USA a ten to 20 fold multiple of the ESTIMATED NUMBERS.]"
Dr. MacDonald also stated that "there is not country with a greater knowledge of the pathobiology of Lyme borreliosis than Germany. "

Dr. MacDonald works with dr. Eva Sapi, the doctor I met in 2011 at the ILADS conference in Toronto. She is the one who is working on the breakthrough research regarding biofilms. In a peer-reviewed paper published about Lyme Disease, it is stated that:

The bacteria responsible for Lyme disease is capable of forming a biofilm which might allow it to hide and resist harsh environmental conditions such as antibiotic treatments, according to a paper published today* in an online science journal.
The paper notes that Borrelia burgdorferi, the causative agent of Lyme disease, is continuously rearranging its structure.  It can transform itself from motile spirochetes into cystic, granular or cell wall deficient forms even when it is in an unfavorable environment.
[LINKS: *From a news release by the University of New Haven. The published paper is online HERE. ]

==>To register to view free streaming videos of the 2012 ILADS conference, go to the ILADS ( website or click on this link REGISTER.

Image from this website 
German was my second language before English was, but I'm quite rusty after years of not using it all the time. However, I went traipsing a bit and found a site with a map of Germany, documenting cases in 2008. According to that, the total from all the areas in the country came to 743.000

Another German site I found, mentioned that Mitt Romney used Lyme Disease as part of his campaign speeches, saying that the cases in his home state of Virginia are rising. The write-up continues to say that in Germany, one in 14 children now become infected! The map to the right is from the site above, and the link is in the caption under the picture or HERE.

The translated site with the information just above, is here, if the link works to give you the English translation.

Is it little wonder that within days, some 17 countries have signed up to join a Worldwide awareness planned for May 2013?

Yet, there are the people who still don't believe!

This year, when I sent requests to various towns around us to proclaim May as Lyme Disease Awareness month, four said yes (Caledon, Brampton, Orangeville and Brantford). However, Hamilton just marked the correspondence as "received". The particular Council meeting's video is still online if you want to listen for yourself. LINK
Move the time slider to about 14 minutes to hear the discussion.

Notes from that: Councillor Maria Pearson said that Lyme is out there, and if she can advise the public, she'll do so. Councillor Clark had something to say about a report from two years ago, that the deer ticks are different from dog ticks and the dog ticks don't carry Lyme disease .... Councillor McHattie "didn't want to panic anyone" --- and wood ticks are the ones carrying Lyme, but they are different than deer ticks. He said they're only at Long Point and the Lake Erie shore Line.

The graphic with the Canadian flag and the tick on the LymeProtestCanada page was designed by my friend Fi, a graphic artist in South Africa. When I made myself T-shirts (picture) with that graphic, several people wanted to buy it off me. I'm thinking of having some printed if there is interest, and then selling them just to cover the printing costs. I think they should work out between $12 and $15 each, depending on how many I order at first. Anyone interested? Drop me an email, please, to see how many would want one to wear for various events or just for awareness around town, etc.

A small footnote about my new meds, as posted on Friday: Very sleepy, as always when I start a new protocol. Slept ten hours and found the cats very happy to share the bed when I finally woke up! Within a few hours I was tired enough to sleep again, but forced myself to do several hours of housework, vacuuming, steam-cleaning, washing floors and doing laundry. As all Lymies know, we have to keep moving!

In the scope of all the above happenings, this is small potatoes, but I promised to post, so there it is. Thanks for all the emails and comments and my apologies if I don't always reply. Please know that I read everything and love hearing from you - even if it is another heart-breaking story like today's, of a woman with Lyme who is sure she passed it on to her two children.

WE CAN MAKE A DIFFERENCE. Things will change. Soon.

NB: I have no medical training, only my own journey, research and conversations about Lyme Disease. Please do not take anything in this blog as medical advice.

Friday, November 09, 2012

Disappointment and new protocol

Remember the reference I made to the big news we might have on November 7? I didn't want to get too excited ---
We had submitted a proposal to do a presentation at the ROMA (Rural Ontario Municipalities Association) in February 2013, and we had the support of several Councillors like Mayor Marolyn Morrison. We just heard that we lost by only 2 votes. We won't be going to the conference to present Lyme disease and the plight of Lymies in Ontario and Canada. However, she will present the same proposal to the agenda of the AMO (Association of Municipalities of Ontario) for their conference in August in Ottawa.

Disappointed --- but still glad that there was a long discussion around the proposal and that many of the people attending, heard more about Lyme and hopefully will be thinking about it! Every little push helps in the groundswell.

I haven't yet heard back if the write-up I submitted to be presented at the FCM in Ottawa on November 19 needed anything else. But maybe no news is good news! The most important is that the FCM will hear about Lyme, and then we'll hear what next. 

Joe and I will be at the Ontario Federation of Agriculture on November 18 and 19, manning an information table while the OFA has their Convention. Hopefully we can get many of them to notice. We'll be sure to have petitions there - be it the one from Elizabeth May or the one from David Tilson, or the one from the WHO!

On another front: I've started my new protocol this morning. That means, back on the ugly yellow Mepron (which gave me very vivid dreams and almost waking hallucinations last time), still on Malarone, adding a Sulpha drug and the Bab-2. Took the first doses this morning. I'm still waiting for the Tinidazole which has to come from a compounding pharmacy and they haven't called yet.
New protocol started today, Nov. 9, 2012
People are talking about massive migraines while on Tinidazole. There's talk about the Bab-2 putting strong sportsmen in bed from herxing. So, we'll wait and see what it does to me and my funny body when all things are in! The picture above is of a few of the things taken this morning.

Getting excited about all the activity around the Lyme Awareness planned worldwide for May 2013! People are getting to talk to their towns and cities to ask about possibilities, and thinking about what they can do, get friends and families to help with and to push for more awareness. Canada page  and the Worldwide page if you want to look.

Links to previous posts referred to in this post:

Tuesday, November 06, 2012

Trying to keep up with happenings

So many things have happened since we came back after seeing Dr. McS! I'll try to update or recap. But keep reading -- there's big stirrings going on!

Essie holding on to my hand
Rather than talking about my Lyme, it is much more fun to be occupied by one of our three cats, who missed us very much while we were away. Here's Essie, who thinks she owns me, taking hold of my hand with both paws to try and drag it off the laptop. She thinks she has the only right to be on top of my lap and not some machine!

Several people asked what the previous post meant, with all the names of the medications and such. "Are you still sick?" was the most popular question. I guess so, even though I don't want to admit it, haha!

In short, I'm still being treated for Lyme and the co-infections of Babesia and Bartonella, plus a protozoa infection. Some of the medications we can't get in Canada, so had to fill the prescription while in the States. Some capsules would have to be made at a compounding pharmacy - and thanks to the advice and emails of caring Lymies about how to do this!

I don't have the new protocol's prescriptions yet. Money and time, you know. I'm continuing on some of the meds I still have from the previous protocol, plus the supplements, of course: Cat's Claw, Grapefruit seed extract, Vit C from rosehips, Vit. B, Auum oil, Oregano oil, Evening Primrose Oil, Resveratrol, Olive Leaf - er, there are more, I'm sure. [Blog post about the previous protocol.]

For the most part, I'm feeling good, other than the exhaustion and lack of energy. All the drama and damage are going on inside the body and I only notice at the fit of my jeans how the state of things might be, but nobody else might even notice.

But, enough of that!

Lots of exciting things happening on the Lyme front, which is much more fun to talk about.

Many of you know that May is Lyme Awareness Month, and this year I've tried to get proclamations to that effect from several cities and towns. Trying to keep the momentum going for next year!

Reporting back on events:
  • After the meeting with David Tilson, MP, there is now a petition in his office to ask for a National Lyme Strategy. He has a picture that will go in his regular newsletter and he promised to read and report on signatures collected in the House. 
  • Sylvia Jones, MPP, has written a letter to Deb Matthews, Ontario's Health Minister, to ask what is being done for Lyme disease patients. 
  • Following up after the delegation to the Region, I've sent a piece to be read on November 19 in Ottawa. Waiting for feedback to work on the wording, etc. 
  • Front page of the Facebook page
    • Nov 19 and 20 - Information table at the Annual Ontario Federation of Agriculture (OFA) Convention
    • Nov. 20 - I'll talk to a Trefoil Guild
    • Date to be announced - garden club
    • Date to be announced - Rotary club

Other stories to read:

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