Another lobby for Lyme!

Been swapping emails with my friend and birthday buddy, Joe Gray today. As a farmer and as a friend, the drama around my struggle with Lyme disease has been something he has been talking about and informing others. Before sharing his news, here is a picture of Joe and I earlier this year, on our birthday - since we each celebrated a significant number this year!

Joe and I at the Fall Fair.

Joe wrote: "I attended the Ontario Federation of Agriculture's annual convention on Monday. There was a resolution brought forward asking the OFA to lobby the government to acknowledge Lyme disease in Canada. I explained the difficulties that you have gone through and still are. The resolution was accepted."

The exact wording of the OFA's resolution: "Therefore be it resolved that the OFA lobby that the Ontario government encourage the medical community to recognize this is a serious disease, adopt more advanced technologies to improve diagnosis and treatment of acute and chronic Lyme disease as well as improving public and physician education about the disease, thereby eliminating doctor reprimands for actively treating Lyme disease."

Isn't that great news?
Thank you so much, Joe, and everyone else who gets a word in about Lyme, who lets others know about how to do the simple checks and to be aware, not paranoid!

OFA website

Winter is coming!

What a glorious, shining world we looked out on early in the morning! Everything was covered with a fine layer of ice, and as the day warmed up, the sparkling and diamond drops were everywhere. This is a Blackberry shot of our bbq (braai in Afrikaans) - Jaco forgot to put the cover back on after they "tanned some steaks" on Saturday.

 Yes, I know those who  were out late last night did not appreciate finding their cars totally iced over and their ice scrapers still locked in the trunk, which couldn't be opened because of the ice ... but it is very pretty! Driving the work the street signs had long icicles hanging down, making the drive incredibly interesting. Mundane things decorated by ice.

Ok, Bat, I know you say snow is eeeeeevil .... but you'll have to come here to beat me up first!

First needle & elevated lead levels

Well, this one was a success!

I asked Arno to watch me do the first injection, just to be sure not to mess it up. At least I didn't tattoo myself with the red stuff! This will have to be done three times a week for the next 6 months to a year, and hopefully will help recover some of the destroyed brain pathways.  It burns to go in, though, but only for a second. No big deal.

We sorted out the pills for the next week. About 45 pills a day, without the liquid supplements and probiotics. Right now I'm also on Malarone, which is a malaria tablet; 4 a day for the next three days, then 2 a day for the next 3 or 6 months. A friend had severe hallucinations on malaria tabs and told me last night to watch it!

Anyway, the new diagnosis. Seems I have elevated lead levels. That was one of the tests the doctor wanted to do and the one I had to Fedex, as mentioned in the blog post under the pic of the new pills. Last night I received this email from the Lyme specialist:

 
"Your lead is elevated at 25. I am going to attach how I treat it, but you can also see a naturopath in Ontario for IV chelation.
It may not resolve rapidly, but need about 3 rounds of the detoxamin. The IV treatments also can take a while to clear it all as it is stored deep in tissue, in bone."

Then from her email, the cost per round (I won't copy and paste the whole thing only the bottom line):

$270.00 for 7.5 weeks plus $30.00 packaging and mailing =$ 300.00 US

Just picked up new meds

I've just been to the pharmacy to get the prescriptions for the next month or so. It was literally a shopping bag full! Some of the prescriptions can no longer be found in Ontario, and we had to pay for two months' worth while we were in the States. The syringes are for injections I'll have to do myself, three times a week, for the next 6 to 12 months.

All the extra tests that were ordered, have now been done. The heavy metal testing has to be done in the States and the specimens were sent off by Fedex last Monday. This afternoon I took the requisition to the blood lab and had that work done.

Look at this lot! Maybe I can open my own store on the street corner! The last few years, since I became infected in 2007, was a learning curve of note. Lots of new knowledge gathered, although I could have done without that diploma.

Deep, sore bruises

Bruises keep appearing on my legs. They hurt!
This is probably a funny picture, taken with the cell phone of my right thigh. There are more bruises on the back of both knees, on the inside and outside of both thighs. There has been no trauma; no wild parties, no dancing on tables or rolling down stairs! When the LLMD saw my heavily bruised legs on Nov. 7, she admitted to thinking they were caused by some force from outside (use your imagination!), but quickly changed her mind when she saw how and where they were placed.

She thinks there might be a Vit. K deficiency or something. I have a request for a specific blood test but am only seeing my family doctor on the 21st of Nov. He has to re-write the New York state prescriptions in order for me to fill them here in Ontario.

So, just another milepost on the weird path through Lymeville to Health!

Roasted Red Pepper Soup

Trying out new things all the time to fit in with the restricted diet, is an ongoing adventure. Depending on my mood and energy, I sometimes make a few items to use during the week, or to freeze for later use when the energy is low.

Last night I roasted a butternut squash, a large red onion, a green apple, firm red peppers, and a few kale leaves with sea salt to crunch as chips. When cooled down, the squash was scooped out and mixed with onion and apple as well as low sodium (preferably home-made) stock to create a creamy soup. A splash of apple cider vinegar (with the mother) added some tang.

The peppers were left to cool a bit, then the skins removed, some more onion and garlic added as well as stock. Use a wand or immersion blender to smooth. Today, a few fresh kale leaves were added before heating up the soup - look at the pretty colours!

 When the kale had wilted and the soup was warm, it needed some creaminess ... and I've found that milk doesn't always play nice with me any more. So a dollop of Greek yogurt did the trick!

I thought it looked VERY pretty and healthy, but the guys in the office had all sorts of things to say about a purely vegetable meal. They'd rather have bacon or bratwurst or hamburgers. No matter what they think, I thoroughly enjoyed this meal!

To the States for treatment again

Last Monday, we had to take the 7 hour trek to the USA again, in order to be seen by a Lyme Literate doctor (LLMD). The doctor who was treating me in Ontario has been forced out of practice for treating "a disease which doesn't exist in Canada". (spit)

I'm so grateful that dr. Maureen McS accepted me as a patient! I first saw her in May 2011, when she also diagnosed me with the terrible twins, Babs and Bart (Babesia and Bartonella). For three months we attacked Bart, and then in August started targeting Babs. 

Dr. McS with me at the Lyme Conference in Toronto.

The hotel where we stayed was quite nice, but food was an issue. Really hard for me to find much, especially breakfast. When you tell a restaurant you need a meal to be gluten free, sugar free, casein free (no cheese), not allowed salad dressings or mayonnaise, and no beverages other than water with lemon juice, they look at you rather funny!

Spent about 90 mins with the doctor. She is generally pleased with my progress, but doesn't like the ugly, deep hurting bruises on especially my legs. More tests to be done.

I would also have to start injecting myself with Vit B shots, to try and get the brain functions back to normal.

She's changing some of my meds, keeping me on some and adding more to the cocktail. This will be hard on me, she said, for the next three months. Now I have to wait to see my GP in Ontario to see which prescriptions he'll rewrite and which ones we must order ourselves.

Some of the pills our pharmacy can't find in Canada any more, so we bought and paid for one kind for two months while in the USA.

That's when I had another diabetic crash. Too long without food, and poor Arno had to drag me to a food court and got some steamed veg and wokked pork with a cup of black coffee. I didn't get as bad as the previous crash, because he got such a fright the previous time, poor guy, and reacted rather quickly this time.

The doctor said I have to eat every three hours to avoid these crashes, and always include protein, which is what I've been trying to do all along. If you see a  woman carrying a little bright pink lunch bag everywhere, say hi! Chances are it might be me ...

Have to continue with the very restricted diet, but might be able to add cider vinegar with 'the mother culture' included. Oh and I can have goat's milk cheese and feta.

Must try to work in more walking, cut down working hours (currently around 30 - 40 per week), and look at another 18 months of treatment to beat the Lyme monster.

Meeting the Lyme warriors in Toronto

What a rush this weekend was! Being able to see, hear, meet, talk to and just observe so many people who have become familiar to me through research about this disease we are fighting, either as patients or as health care givers or family members, gave me energy to fly! Of course, as always, then the crash happens and I woke up this morning with infection in both eyes. And fatigue dragging my feet. But it was so worth it! I'm busy uploading some of the pictures taken this weekend. Below is a collage of some of the pictures that meant so much. I can't pick one that meant more than another, but as a Lymie who have seen the suffering of Mandy Hughes on the film, "Under our Skin", it was particularly uplifting to see her at the conference, and to talk briefly with her and with her mother.

 MORE PICTURES
Too many to name, but the pictures are being uploaded and captioned to Picasaweb. You can see them either from HERE  .... OR if you have a Gmail account and wish to comment on some of the pictures, please go directly to the ALBUM. Hopefully the rest of the pictures will be uploaded today, October 31.

Thank you, to everyone who came and who give us, the patients, so much support, in many different ways!

A very special thanks to my friend Anne, who dragged me along to the conference. Part of the Lyme Brain is that I find it hard to make decisions or to plan ahead. Anne would have none of that. Thank you!!

Meeting dr. Murakami

This weekend, Oct. 28 - 30, the ILADS Lyme Disease Conference will be held in Toronto. It is geared towards doctors, medical students, nurses, and health care practitioners. Several speakers will be talking, answering questions, and getting the desperately needed information out. Please pray with me that it will help push this scorned disease even more on the foreground? I'm not pretending that other diseases and conditions are less than Lyme, only that the fact of no available treatment in Canada, the lack of testing and the serious lack of support for doctors and patients must end or be changed.

ILADS Lyme Disease Conference

On Saturday night, a small group of us hope to meet with dr. Ernie Murakami - seen as a hero by many, yet pushed out of practice in BC.
Video link and more information about him can be found HERE, a CBC link from 2008.
Picture from the video is below. 

BC doctor urged to retire because of zealous approach to Lyme disease

Normal isn't

Things turned out rather difficult today. We were at work for too long after the servers were hacked again, without lunch, other than a banana and a few strawberries. By 4:00 pm, I told him I felt nauseous. Within minutes, my body temperature plummeted and I became totally disjointed, confused, weak and on the verge of collapse. Arno dragged me to Tim Hortons and made me eat some minestrone soup, which was the "safest" item they had within the severely restricted diet, and the quickest warm meal he could think of to get into me.

Later he said something to the effect of "a normal person's body wouldn't go into shock that fast" --- and that literally rocked my world. No longer normal, and I kid myself by pretending.

Dr. Eva Sapi - Bacterial Biofilms and Lyme Disease

Dr Sapi will be at the ILADS conference in Toronto at the end of the month. I'm still trying to understand the biofilm idea. Brain not playing along!


Added after the Lyme Conference:
I had the chance to meet and talk to Dr. Sapi, and to personally thank her for the work she is doing! Also attended her lecture. She happily agreed to pose for a picture:

More pictures from the Lyme Conference in Toronto are
HERE.

Brain healing

Yesterday morning on the way to work, I stopped at a spot with a wetland, that always fascinates me with changing colours, sometimes reflections, sometimes gunk covering the water - always something different. Took the picture below, among the 40 or so others that were squeezed off. Even though the Fall colours are fading, the reflection in the perfectly smooth water was so pretty! A camera can just not capture every nuance of the play of light and dark that the eye can see.

Then, driving home later, there was a talk on the radio about taking a short walk in a wooded area or park during the work day. Seems the part of the brain that is needed for sharp concentration, is healed while the other part of the brain that is nourished by nature, takes over for a few minutes. What a blessing to have something living and green somewhere, to look at, enjoy and to find healing at the same time!

I had the privilege to speak to a group of women last night about Lyme disease, the lack of treatment in Canada, the fact that testing is inadequate and that doctors are not equipped to diagnose the early stages. Those who try to help, are often pushed out by other doctors, for treating "a disease which doesn't exist in Canada". Mind-boggling.

We need more publicity about the early stages and the fact that Lyme disease is treatable if caught early; we need doctors to be aware of the early symptoms; more information must be posted everywhere, since knowledge is power; better and more accurate tests are desperately needed; and doctors and patients who are dealing with Lyme disease and the co-infections need to be protected from ignorant people who still deny it exists.

Let's hope and pray the ILADS* Conference in Toronto will be attended by many doctors, nurses, medical students and others in the position to constantly help get the word out, and to prevent more people getting sick and then being set adrift with no treatment!
(*International Lyme and Associated Diseases Society)

Silent Sunday

{Originally from and idea on Jay Mountford's blog}

Through the window today

This is not supposed to be a prize-winning picture, and just taken with the Blackberry, but the view of the tree through my window never fails to get some emotion going.
When the new apartments (background) were being built, I begged the contractors to leave my tree alone. Since it wasn't really in the way, they didn't touch it. Every season the tree wears a different attitude, it seems.
Right now, the fallen leaves around seem to be soft, like a quilt of warm memories.

And a quote comes to mind, since several people dropped by today to comment on the information session I did yesterday about Lyme Disease:
"Healing does not mean going back to the way things were before, but rather allowing what is now to move us closer to God." Ram Dass (born April, 1931)

Linking up with this or that Thursday

Wordless Wednesday: Nature's Fall Salad

Lyme disease is a thief.

It has stolen so much of life, of our family, of the essence that I thought of as ME.

Creativity used to come easy and as natural as breathing. Now it is a struggle, as if there are walls everywhere between brain, eyes, hands and inspiration. If it doesn't hit me in the head -- like an apple falling off a tree while others are being picked, and landing inside a large dandelion --- I have to go looking for inspiration. But here it is. The apple dropped into the soft green leaves, and it is like a hand is gently holding the apple aloft, showing off the deep colours, the gloss of Fall sunlight, the bounty of nature around us.

And I'm deeply thankful to be part of life, of finding joy in unexpected places, of getting on with this fight against this miserable disease which "doesn't exist in Canada". My job is to hold it aloft, to warn others, to make sure the voices are never silenced, and help others protect themselves and loved ones before it is too late.

Ask me about Lyme disease. Chances are I might know more than your doctor does. Because my life depends on it.
Enjoy this Wednesday!

Add your Wordless Wednesday - it is a joy to read them!

Wordless Wednesday: Fractured heel

(Terrible cell phone picture ...) Not exactly wordless, but it DID happen on Wednesday! Son alone at work, waiting for his lift. Son, being male, not listening to good advice not to go on the ladder to move certain beams around. Son fell down. Lots of annoyed yelling at himself (I was told). Discovered no ice. More yelling. Came home, can't put weight on the foot and thigh in pain as well. Being male, wouldn't be taken to be seen by a doctor. Mom insists there's a fracture. Next morning, ER stop with Mom taking no nonsense. Two hours later, splint on, crutches in place, fracture confirmed. Could have been worse, though! Picture shows son with me at my second job, in wheelchair, crutches waiting, leg propped up, and working remotely from my laptop. Going to be an interesting Canadian Thanksgiving this weekend!

PICC line

PICC line
Originally uploaded by MeerkatMarlene

The line was inserted on Nov. 30, 2010 to deliver 2000 mg of antibiotics (per day) directly to the bloodstream in the fight against Lyme Disease. After some weeks, my body rejected the meds, and the line was pulled on Feb. 2nd, 2011. Then I was off the antibiotics, the infections crept back, my body took a major whack and on March 17, I was officially abandoned, like thousands of other Lyme patients in Canada. We have to go to the States for treatment. If we're lucky.

Wordless Wednesday: Last Roses of Summer

The roses by the back door this morning, dripping with golden Fall sunrise and nighttime rain. A single strand of a spider's journey touched the top of this group.

Goomba the grandbunny

 

Goomba is a sweetheart. He really belongs to Theo and Jenni, but is living with us for a while where he has more room to run around. He especially likes to be on the enclosed porch, and would stay there for hours if we let him.

Food restrictions