The Invisible Disability of Lyme will be very public!

Lyme Disease. Super Sized.

The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron in New York City.

 

Lyme disease has been an invisible disability ... The International Lyme and Associated Disease Society (ILADS) launched a public awareness campaign by making this invisible disability more visible in Time Square during the Holiday Season. Greater public awareness may help to reduce the catastrophic disease burden caused by Lyme and associated diseases.

ILADS is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron.

The Jumbo Tron is anything but invisible. The giant video screen is 26 feet tall and 20 feet across and is strategically positioned at 42nd Street between 7th and 8th Avenues in New York City. The spot will run every 20 minutes for 3 months. It is estimated that 1.6 million people pass through Times Square each day. The spot will remain in place during the Thanksgiving Day Parade and New Year’s Eve celebration for bonus exposure.

The all-type animation focuses on the statistical fact that Lyme disease is growing faster than AIDS.

"Lyme disease is an invisible epidemic," said Barbara Buchman, Executive Director for the non-profit International Lyme and Associated Diseases Society (ILADS). "Tick-borne illnesses spread quickly and the diagnosis, which is largely based on symptoms, can be elusive unless a physician is Lyme-literate."

(Information shared from Putting Lyme Behind You and ILADS Media Center)

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.