Tuesday, December 25, 2012

Ebook published

To everyone stopping by this blog -- my apologies for being Missing In Action! Apart from some health issues, we also had to do a quick trip to find the sun in Florida, using some points and airmiles or risk losing all. We just spent time reading and relaxing, really. I enjoyed a few swims in the warm water, savouring the taste and feel of the ocean again. Dear hubby was sick and spent most of his time trying not to move too much or risk coughing and losing his breath!

But --- the excitement is that a work that Jenni and I have been working on, is now available as an Ebook in a variety of formats, for Kindle, Nook, Sony, Kobo and others. If you don't have an electronic reader, the book can also be downloaded and read on your computer.

Please take a look if you are interested!
You can download a sample after registering for free at Smashwords, where you might also find many other books for free or purchase. LINK

Tiny Tales is not really a children's book, although it is perfectly safe for children to read, of course. You can read this anywhere, while waiting for an appointment, or to give as a gift to someone else. Jenni's wonderful illustrations add so much to the little stories, which are indexed so you can jump around.

We hope to work on more stories, and maybe a follow-up edition or something now that we have done the initial work to see how e-publishing works. It is not as easy as I thought a little book like this might be, and many, many hours went into the preparation!

I grew up with meerkats as pets, and have played with many unusual pets, like chameleons, hedgehogs and even a snake. Jenni loved the stories told in conversation and asked me to try writing a few for her to illustrate. Her dream is getting into the illustration industry.

She takes commissions as well! She uses many different styles, depending on what she is doing.

Please let us know what you think about this first combination effort? Thanks!

Tiny Tales on Smashworks

Tuesday, December 04, 2012

Toronto: College of Physicians hearing, Dec. 6

Lymies or family members of Lymies in the area near and around Toronto, Ontario - if you can attend a hearing this Thursday, December 6, from 11: 00 am, please read on!

Lois wrote and gave permission for her history and the resulting hearing which will be on Thursday, to be shared on this blog.

Her voice is heard in the post below. Remember all Lymies have brain fog, so if I've missed something, you would understand if you have someone with Lyme disease, known as a Lymie, in your life ..... floor over to Lois.

I am herxing (great timing eh?) so I will give you a brief summary.

Got sick 2004, saw 35 Canadian physicians, was misdiagnosed. In Dec 2009 I paid $2358.00 for a PET scan which showed inflammation in my brain typical of Lyme disease. Have been in treatment ever since...hugely improved, but fighting rashes and painful skin inflammation and low adrenal function. It is nasty but I originally had about 40 symptoms and am now down to 6.....but they are a really mean 6!

One of my symptoms which I became aware of after a surgery in 2008 was that pain medications, anaesthetics etc. would cause paradoxical reactions.....I would actually go somewhat psycho and would remain paranoid, anxious etc. for months after.  I did not know why at the time I just knew it happened.
Early 2009 went for colonoscopy, informed doctor about my strange reactions to sedatives, anaesthetics etc...he ignored me, gave me Versed, I went into a major panic attack...it was horrible. I took that doctor to College of Physicians and Surgeons and then to the appeals board and did win a ruling against him for being rude to patients but as I had only told him verbally about my drug intolerances I could not get him on that.

I went to the local hospital and made sure they had all of my drug intolerances listed on my chart.

In mid-2009 I ended up in emergency via ambulance as I had a diverticulitis attack (no big deal; I know how to deal with that) but I had collapsed on the floor of my house and when I came to my brain was not able to make my body function for about 30 minutes (lack of blood flow to the brain). Emergency did some testing and found a nodule on my lung by accident. They were not checking my lung it just got included in the test they were doing. I was admitted to the hospital by a Dr. AB. I told him about my paradoxical reaction to Versed and my prior reactions to pain meds etc. He pumped me full of morphine and Stemetil and I lost my mind. When they stopped the drugs I signed myself out of the hospital so Dr. AB, rather than admitting a medication error, said he thought I was psycho when I was admitted, although in his notes on my initial consultation he said I was pleasant and anxious but in no distress. “Psycho” is what he left on my discharge papers so that is what was left on my hospital chart. (I have locked down that portion of my medical files.) It took me months to recover. I went through the Privacy Commissioner, the Hospital (by now I knew I had Lyme), the College of Physicians and Surgeons and finally the Appeals board where I won my case. My case got sent back to the College for another review.

In the middle of all of this I took the doctor to small claims court and after a year of wrangling paper work with a high priced lawyer a motion was passed that I could not take my case to small claims court unless I could supply an expert medical witness. If I could have afforded an expert witness I would not have been in small claims court so that action got stopped.

The College of Physician and surgeons on the second review of my case noticed that the nurse had not initialled beside the drug Stemetil so therefore said I was never given the drug. I had gone after the Doctor for the Stemetil but there is lots of paper work which notes that I said that I was not sure which drug made me flip out. I am back at the review board again now pushing the morphine instead with more proof which I got from the hospital about the fact that my prior drug reactions were on file at the hospital. Also, the College made a rather big error. They stated that I had been given morphine in prior medical procedures and I did not have a reaction, which is true, until Lyme the drugs acted normally on me. But I had only given the College permission to view my hospital records for the 4 days I was in the hospital....

So, I have written a lot of letters to a lot of people and I am always pushing the Lyme angle and have written scathing letters to the College etc. but when I am in this review they will not let me get too far into a discussion about Lyme or they will cut me off pretty quick but I have a presentation which will be brief. In much of what is being discussed I will not be saying that much about Lyme but they all know why I am there.  I made a huge deal in writing about Lyme disease because they are forcing me to come to the review at this time and I am not well enough to do so. They would prefer that I do it by phone. I will go in person if it kills me! (I had a terrible summer; my GP thought I was dying, so did I...went on Suprax and I am coming back but I am very weak.)

It would be great if anyone could come to the review. I don't think I will get very far as I am sure the plan is to shut me up but I have made a lot of noise about Lyme and that was always my objective. Anyone who could just sit through the review would be appreciated. I have always said I would go for media attention ....it is too small a case to interest any press but the people at the review will not know who anyone is so I am just trying to make them worry. I have won twice in the past....so I might win again if this herx will stop by Thursday.

The Health Professions Appeal and Review Board is located at 151 Bloor St W, 9th floor, on the south side of Bloor just east of the St. George subway stop.

If anyone has their Lyme T shirts it would kind of neat. I think you have to sign in.
If anyone questions your reason for being there you are simply from a Lyme support group and are concerned for my health during the hearing or whatever sounds good to you.

Because this is the second review much of the original material will not be covered so you may not totally understand what is going on, but anyone who could take notes etc. would make the College very uncomfortable.  Tape recordings are forbidden.

This is a lot to ask of anyone ... so I will understand if no one attends but if anyone is well enough and would like to see how these types of reviews are handled I would really love the company.

The more fuss we make about the Lyme the better it will be for the people coming after us. More and more Canadian doctors are becoming aware of Lyme....we have to keep pushing.

Good luck with your new Lyme meds....it is always scary starting a new one.
Lois MacLean

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 (ilads.org) 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

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 http://www.avivacommunityfund.org/about/voting.  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:

Related Posts Plugin for WordPress, Blogger...