It is unbelievable to me how quickly time passes! I started this blog entry back in late summer, just before the kids went back to school. Then more time passed and here it is the middle of October and I’m thinking about Christmas (WHAT!).

There has been a lot going on this spring/summer/fall health and Lyme wise!

First of all, after approximately 15 years on Synthroid I decided to stop taking it, cold turkey! My GP retired so I thought it was as good a time as any to see what would happen. I also hoped that, if required, I could start a new medication.

I read that it takes about six weeks to get out of your system so wasn’t expecting significant changes for the first little bit and I was right. Nothing major occurred. A little more fatigued and a slow weight gain but that was tolerable, and expected. I wouldn’t recommend others do this though.  I was originally diagnosed with Hypothyroidism based upon some fairly generic health issues, and the one TSH number that my Doctor relied on. The health issues, such as inability to lose weight, fatigue, etc., etc., never went away while on treatment but that didn’t seem to matter to my Dr. as long as that number was within the range. In hindsight, I should have pushed harder and had the medication changed a LONG time ago. Going off cold turkey was a silly move but it worked out for me. It may not work out well for someone else.

I made an appointment with my new GP at about the seven week mark. She sent me for bloodwork which I had on a Monday morning. By Monday afternoon, I had a call from my Doctor’s office that my bloodwork was back and to make an appointment.

My new GP advised that I definitely needed Thyroid medication but she agreed to try me on desiccated thyroid medication instead.  I had high hopes for this medication based upon a book I picked up called “Overcoming Thyroid Disorders” by David Brownstein, M.S. I pictured my weight starting to drop, my fatigue lifting, etc., etc.

Well, that didn’t happen. I may have mentioned already that I had what I thought to be a sensitivity to red meat and did not eat any for two whole years and now only eat a little bit here and there. Well, the desiccated thyroid medication (at least I think that is what caused it) resulted in what appeared to be a resurgence of the terrible gastrointestinal issues that I endured before I stopped eating red meat. I ended up going off the desiccated thyroid medication and being put back on Synthroid as my GP is not aware of any other type of medication available 😦 I have an appointment with an Endocrinologist tomorrow but I don’t have high hopes as I saw this same Endocrinologist several years ago and she also just went by the numbers rather than by the symptoms.

I started doing a bit of research on Thyroid, Lyme and desiccated thyroid medication and, of course, for some people the Lyme and the possible resultant red meat sensitivity can be a problem with treatment. Nothing is simple when it comes to my health apparently!

Although my brain is not functioning that great these days and I sometimes feel like I’m in a fog, whenever I have a little bit of extra get-up and go I try to get a few things done. One of the Lyme initiatives that I have committed myself to is called “VOCAL – Voices of Canadians About Lyme”. I’m the coordinator of the event (sort of) but there are a couple of hundred people (and growing) across Canada that are working on Lyme awareness events that will take place on Saturday, June 3, 2017. We are hoping for hundreds of people to attend these events and let those in the government and the medical community know, once and for all, how much of an issue Lyme and tick/vector borne diseases are right across Canada.

I’m maintaining a database of emails and province of residence of people willing to be involved so that I can provide that information to the various provincial coordinators. It’s slow going due to the fact that most of those that are involved are still sick and have good and bad days. It seems lately that many are having more bad days then good. I’m not sure why, but it certainly seems like a common theme during discussions with people all across Canada. I can relate! These last few months have been a hell of a ride health wise!

Another initiative that has taken place over the summer is the creation of a Lyme Disease Society of Canada. A great group of people have started up the Society and are plugging away at getting all the i’s dotted and t’s crossed. They have a lot of amazing ideas and I think they will be a force to be watched in the Lyme world. At present, they are just on Facebook but a website is in the works and should be on-line by the end of 2016. Keep an eye out for them!

I’m finding that I’m all over the place these days and can’t seem to write much but I will try to get back to at least a somewhat regular routine with my blog posts – if at all possible.

So much to say! So much to do!