Saturday, June 14, 2014

"She turned me into a newt!" ...and something kinda serious, too.

Hey!! Look what I nearly stepped on today!!!

Now, I know you all are thinking "What a cool looking salamander!!"....alas, Beloved Readers, you are incorrect.

You see, I, too, leapt to the conclusion that it was a salamander but when I got home, I immediately Google Image-searched "red salamander" only to find that I was mistaken. A red salamander is something entirely different.

Curious, I decided to broaden my limiting it somewhat...weird... and Google Image-searched "Ontario Salamander" and I learned that....

It is NOT a cool looking salamander.

It is a cool looking NEWT!!

No... not a N.E.W.T.... a NEWT....a N.E.W.T. is, again, something entirely different.

And it's not just any run of the mill kind of newt, it's so cool it actually has two names. It answers either to the ho-hum name, "Eastern Newt" OR to the fancier but rather obvious name, "Red-Spotted Newt".

And did you know that it is the only newt that lives in Central/South Ontario??

Well, to clarify, there's probably more than just this guy living in Central/South Ontario but the Eastern Newt/ RSN is the only species of newt that lives around here.

I thought that was pretty neat.

 I've seen loads of salamander but he's my one and only newt and I was moved to share my big news with you guys.

Don't mention are most welcome!!



p.s. I realize I haven't been around much over the past few months...

Holy Crap!! I just checked and I can't believe I haven't written anything since November! 


My bad.

My world has been a bit hectic and strange over the past year and the hectic strange stuff really ramped up from October onward, so in accordance with my own special brand of self-preservation, any of my downtime was spent being passively entertained.

I kinda slipped outta "Writer Mode" and found myself very solidly in "Reader Mode".

I've been reading voraciously. Some good stuff. Some crap stuff. But I read my brains out for six-ish months and it was fun :D

Oh...and I also discovered Netflix and got sucked down into THAT rabbit-hole. It's sooooo awesome...and wildly time-consuming.

Here we are now. Entertain us.

I won't go into some of the stuff that weighed me down but I will touch briefly on one thing because it's pretty important and most people don't know a whole lot about it and if even ONE person reads this and learns something new, then that is great.


My Guy has Lyme Disease.

And it sucks.

In a big bad way...and his story is nowhere near the worst I've seen.... but this thing has really kicked the crap out of him.

hmmmm....I've been sitting here for the past half hour trying to figure out how to explain it all and I'm just not sure where to go with it. I could try to tell his whole story but that would take a looooong time to write and it's confusing and convoluted and I don't think I'm up to the challenge.

I guess I'll take a stab at writing up my own explanation which will probably be confusing as hell so if you're interested in reading actual experts describe this just skip down to the blue link and it'll tell you all you need to know...


Most people know very little about this disease ...I know I didn't. I knew you got Lyme from a tick bite and dogs could get it too. I didn't know that it's an inflammatory disease.  If not caught and treated early, Lyme Disease can wreak havoc on almost every system in your body. It imitates many autoimmune diseases which makes diagnosis... to those not familiar with Lyme... pretty tricky. It can be mistaken for Rheumatoid Arthritis, MS, ALS, Chronic Fatigue, Fibromyalgia, Lupus, Crohn's,  HIV, Alzheimer's, Parkinson's, Huntington's...quite a list.

The thing is...while the symptoms of Lyme may mimic those diseases, most of which are incurable, if those symptoms don't respond to to the usual treatment or don't quite fit into what is "normal" for those diseases or nothing seems to help...and if Lyme is considered a possibility and it turns out it IS IS, in most cases, treatable with a long term course of antibiotics.

That's where the trouble starts.

Actually the trouble starts with the fact that most doctors don't know anything about Lyme other than a quick text book explanation and so, Lyme is rarely considered a possibility.

If you can actually convince your doc that you think you have Lyme and they send you for a blood test to "confirm" it, the testing in Ontario (and all of Canada) is horrifically unreliable, yielding many many false negatives and if that one test comes back negative...Lyme is ruled out. It doesn't matter if you present with all the symptoms of Lyme, diagnosis in Ontario is based strictly on one blood test. It will not be treated with only a clinical diagnosis.

It is next to impossible to get the treatment that is needed to cure Lyme. Doctors refuse to prescribe a long term course (3 months?? 6 months?? 1 year?? 2 years?? etc etc...until symptoms clear up) of antibiotics to Lyme patients.

The crazy thing is that they will prescribe them for HIV, TB, ocular rosacea (as will be explained later on) but for whatever reason, they will not for Lyme and if they DO...they will get their medical licence suspended.

This forces people to seek diagnosis and treatment in the US...and it is expensive and inconvenient and just plain old crappy.

It is the strangest, weirdest most frustrating thing.

This weirdo thing has turned me into a sort of half-assed conspiracy theorist and if I talk about for too long, I start sounding like a ranting zealot. And that's not cool.

The reason why I am desperate for people to learn about Lyme and how to prevent it and, failing that, how to recognize it and how to treat it, is the fact that the changing climate is allowing the tick population to move further north...up into our neck of the woods. I just want people to have a wee bit of knowledge.

Awareness is everything!!!

So, if you're still with me, please explore at least the first link and read what people who actually know what they're talking about explain why it's important to learn about Lyme:  <--- a great article in Maclean's that explains... coherently... what I've been trying to say.

The leader of Canada's Green Party, Elizabeth May, is this close to making significant changes in the diagnosis and treatment of Lyme. She is an angel. There's still a looooooong way to go ...but it's a start:

And here's a Nature of Things episode that delves into the Lyme Disease problem in Canada:

So...pretty please with sugar on top, do me a great big monster favour... learn about Lyme Disease and how to prevent it. It'd mean a whole lot to me.


p.p.s If you have any interest at all in reading about My Guy's particular story, I've written about it and I tried to be clear and concise in my story telling...I even used bullet points to make it look like I'm not rambling but really, it's just an excuse for me to not use proper sentence structure. I wrote this before I wrote anything else Lyme-related so there are a few redundancies...huh...weird.

If you're NOT interested in reading my horrible rambling writing....this is your final warning.

I hardly even proof-read it since I'm pretty sure most everyone has bailed by now. I'm just going to hit "Publish"

Head back!!

Before it's too late!!

Rough Timeline for My Guy's Lyme Journey

  • His jaw got sore. Really sore. Eating was painful chore. Was treated by a physiotherapist for TMJ for a few months but saw little to no improvement.
  • His fingers started to swell and his joints started to ache. He had a hard time getting dressed, brushing his teeth, climbing stairs, sitting down...pretty much everything.
  • Diagnosed with Rheumatoid Arthritis...even though his symptoms didn't really fit the disease. One blood test indicated that it might be RA and the docs latched onto that and ran with it.Treated with the "entry level" meds but they didn't seem to work so they upped the ante and put him on a stronger drug and 2 days after the first full dose his world turned upside least that's how his brain saw it. He fell down in the bathroom and got a ambulance ride to hospital and was told he was suffering from an episode of "Profound Vertigo" and tinnitus and given a bunch of meds to help him "stabilize". The emerg doc thought it may have been a reaction to the injection he had for his arthritis and recommended that he try a different treatment. He was told it would take anywhere from days to weeks to months before it would go away.
  • Rheumatologist flatly disagreed that it was a reaction to the arthritis injection and directed him to stick to his weekly injection. He did it one more time. Ended up feeling worse than he did when he was in the hospital with any progress made was wiped out. He couldn't walk across a room by himself. I had to help him stand. The buzzing in his ears was relentless and he couldn't concentrate on anything. He was off work for a month.
  • During this time he had an appointment with his ophthalmologist for pre-existing and "unrelated" condition...(or at least we thought it was unrelated) and when the doctor heard about what had been going on, he asked two questions: "Have you spent much time in the woods lately?" (Yes...yes he had. We live in the woods and had been doing a ton of clearing up of dead wood) "Have you spent any time in southwest Ontario? " (Yes ...yes, he had...Each summer we spend a week camping in Long Point). The doc then implored him to get tested for Lyme Disease and when the standard Ontario test came back negative (which it did) he was to send blood samples to California to be tested for Lyme there. Also, he strongly suggested that he NOT take any more drugs that compromise the immune system...which is exactly what the methotrexate injection did. He guesses that once the immune system was turned down a few notches by the injections, the Lyme bacteria was given free reign over his body and went in to hyper-drive and the symptoms multiplied and worsened.
  • Rheumatologist, upon reflection, decided that what My Guy was suffering from was probably not RA because it was not responding to treatment the way RA typically does. Suggests that it could be MS and sets up an MRI to explore further....MRI shows that it isn't MS either. Rheumatologist emphatically refuses to consider Lyme as a possibility "This is NOT Lyme Disease. Chronic Lyme Disease does NOT exist!"
  • Found a local Lyme Literate Naturopathic doc who after taking note of all of the symptoms My Guy was presenting, told us that he had approximately 80% of the listed symptoms of Lyme and that it was his opinion that it WAS Lyme Disease and wanted to start a course of treatment right away...which meant either flying to BC for treatment or travelling to New York state (both options would be prohibitively expensive) to be treated because Ontario refuses to treat Lyme with an extended course of antibiotics. We did send blood to the lab in California and it came back positive for Lyme.
  • Yup...Positive for Lyme Disease 
  • a remarkable lucky twist of fate, the "drug of choice" in the treatment of Lyme is a very strong antibiotic called, Doxycycline, is also the drug that he had been prescribed one year previously to treat his ocular rosacea. After the initial two week course(in the fall of 2012) cleared up the ulcers on his corneas, he was told to take pill or two a week just to keep the ulcers at bay. He was probably going to have to do this for the rest of his life...So he had a prescription for Doxy (with many many repeats) to treat one condition but no one in Canada (except one Naturopathic Doctor in BC) would prescribe long term for Lyme...because long term antibiotic use is "bad"
  • Taking matters into our own hands, we did a big BIG no-no and, along with the protocol that the NatPath doc set up for him, My Guy started taking the Doxy at the recommended dosage to treat Lyme Disease...and slowly but surely, day by day, month by month, he started feeling better.
  • The full body inflammation and painful joints subsided "Your arthritis seems to have gone into remission." -says Rheumatologist. How strange...
  • The buzzing in his ears gradually stopped...mostly
  • He is able to stand  up and walk without feeling dizzy
  • He is able to stand for extended periods of time without need to hold onto something to prevent himself from falling
  • He is able to DO stuff
  • It's amazing!!!!
  • So, an extended course of antibiotics has cleared up most of his symptoms... and this is after being told by two Family Physicians, one Rheumatologist, one Infectious Disease Doc and one Neurologist that because that one (highly unreliable) blood test came back negative, he couldn't possibly have Lyme Disease and that there was no such thing as Chronic Lyme Disease.
  • These are the explanations we have received from the neurologist: a) He just must have a predisposition to inflammation(that has "mysteriously" gone into remission) b) the vertigo and tinnitus were most likely caused by an ear infection (which the Ear, Nose Throat specialist determined that it was not) and that 3) any of the cognitive difficulty he was having (which was LOTS...losing words, trouble concentrating, unable to complete sentences, memory loss, difficulty processing information and acting on it, difficulty with comprehensive reading) was because he was in pain because of the inflammation, and pain makes you tired and when you're tired you feel a little off....yeah...that's it...he's just been tired...???...  We even told the neurologist our top secret secret that he was taking the Doxy and he replied that it is thought that Doxy may have some anti-inflammatory properties and it really was just a coincidence that he was feeling better. Case Closed .... OR ... And this is my explanation: he could've been bitten by a bug that transmitted a bacteria that causes all the symptoms he was presenting and once proper long term antibiotic treatment was administered these symptoms started to subside. 
So, as it stands now, after 6 months of Doxy, he is feeling almost back to himself. He has been such a trooper and has stubbornly and stoically made his way through these challenging and frustrating and painful months and has done his best to not let Lyme run/ruin his life. He still has crappy days but on the whole he is feeling waaaaaaayyyy better.


 The kicker is that we can't even tell the other doctors that he's been taking the Doxy for Lyme or, more importantly, that it actually WORKED because ever since it was established that the medical community was refusing to consider Lyme as a possibility, we let the matter drop and haven't spoken of it again.

"Lyme Disease?? What Lyme Disease??"

We've wanted to stay under the radar because we are afraid that our "golden ticket"...the Doxy he is being prescribed for his eyes ...will be taken away if they find out he's using it to treat Lyme.

It can come back...if one little bacteria spirochete bastard is still floating around in his body...once treatment can come back. And we need that prescription.

Well that's it.

Fingers crossed that the nasty little bastards are on their way out...permanently.

I love you, Sweetie!! You've been a Rock Star!!

I'm gonna go curl up in bed and switch from "Writer Mode" back into "Reader Mode"....


Jamie and Claire!! I'm coming back!! See, I told you I wouldn't be gone too long.


Big Bad Bald Bastard said...

It's great to see you back on the t00bz. Horrible story about your guy- I had a neighbor who was one of the first cases of Lyme back in the late 80s- they treated her for everything but Lyme, including a stint of chemo. The treatments made the original bad condition much, much worse. You'd think that more research would be done- it's not like Lyme is rare these days.

And it's not just any run of the mill kind of newt, it's so cool it actually has two names. It answers either to the ho-hum name, "Eastern Newt" OR to the fancier but rather obvious name, "Red-Spotted Newt".

Love the newt! To make things even more complicated, the immature, land-based stage is also called a red eft. The adults turn green and return to the water.

It's so good to see you posting. Good luck to yer man!

squirrel_e_girl said...

Hallo 4B!!

Thanks for being my first "welcome back" comment!! :D

Lyme is a crazy thing and I hope your neighbour was finally able to get the help and meds that she needed. It is such a weirdo political/medical mess here in Canada and the vast majority of Lyme sufferers can't get proper treatment. The more research I do the more my mind boggles. I just don't understand why it's not being acknowledged as a real threat and treated as such...anyhow...I'm beyond relieved that we were able to catch a break(a sneaky break) and circumvent the bulk of the bullshit.

And the newt/eft IS pretty neat. I was especially amazed that they can live to be 10 years...wowie!! Whodda thunk??