lymed out

my quest to getting these suckas out!

Death by 1000 paper cuts – Part 1


This is going to be a gripe post. Just a warning. I hate going backwards, but sometimes you need to.

Nothing is ever easy with Lyme. Seriously, I mean nothing. Nada. Zilch. Zero. This isn’t me complaining about feeling like crap. Infact, that is quite the opposite. I have had the longest bout of symptom free days (even weeks) for the first time ever in over a year. So lets get that out of the way. Hooray!

This is more a pissy post about the “administration” of Lyme. My days have gotten fairly busy, and I can totally forget about the presence of Lyme, except for the reminders of pills every couple hours. However, that usually comes to a halt after my chat with the LLMD. I am thrown back into the world of getting prescriptions and lab requisitions, counting pills and doing pill charts.

Normally, I have no trouble going to Dr. Handsome Chest Hairs, which I did again. I got my med refills fairly easily as well as 12 requisitions for blood labs. The lab requests should technically last me for one year, however the occasional Liver or WBC screw up will render me into the blood lab every 2 weeks using up my precious requisitions. Now I find out the lab will only let me use 6 of them because OHIP doesn’t cover anything past 6 months.

Because my liver was screwy 2 weeks ago, LLMD asked me to add Gamma GT to the list. This also checks something in your liver I assume. Here are my blood labs again. My ALT is back at normal range but this Gamma GT is up. I don’t even know what this is and I am tired of google, so if someone can shed some light, I will blow you a virtual kiss.

dec18

Another thing I forgot to mention is the CD57. This lab test is supposed to determine the level of infection you have due to Chronic Lyme. Many swear by it, but recently many docs, including mine, say that this test doesn’t really say anything. Some people will low CD57’s feel great, while some with high CD57’s feel like crap.

So I asked Dr. Handsome Chest Hairs for a CD57 lab requisition just for the sheer fun of it. “A CD HUH? I know a CD4 (which is the HIV test), but what is a CD57?”.

I get the lab req anyway and did the blood work where only ONE lab would do it because heaven forbid that Canada makes things easy. I totally forgot about this test which was like 3 months ago. So when I asked Dr. Handsome Chest Hairs what the results were, he looked at the sheet and basically it was “inconclusive due to serum being left too long over the weekend.

It can’t get any better than this. Oh. Yes, but it can.

As I mentioned in my previous post, I will be put on a new treatment which includes the antibiotic Alinia (Nitazoxanide). This is to be pulsed 5 days on, 7 days off. While I am on the 7 days off, I will be doing an Artemisinin pulse. Along with this, there are about 20 other supplements that need to be added. And then a fat free vegan diet. For 120 days. Kill me now.

Here’s a snapshot of what I will call the CANADIAN LYME ROAD BLOCKS. (this is me speaking from my experience)

  1. Figuring out what in the living hell is wrong with you.
  2. Convincing my 2 GP’s that I am not crazy.
  3. Getting and procuring a diagnosis.
  4. Finding a local doctor that will treat you.
  5. Finding a doctor within the province that will treat you.
  6. Finding a doctor within the country that will treat you.
  7. Finding a good doctor in the States that actually knows and treats Lyme.
  8. Getting an appointment without a 3 -6 month wait.
  9. Finding a doctor in Canada that will rewrite your prescriptions and order monthly lab work.
  10. Taking 5 antibiotics at once. Taking 25 supplements all day.
  11. Paying all of this out of pocket.

Now, onto the fun part. Here’s my morning of trying to ACQUIRE ALINIA IN CANADA

  1. Alinia is not available in Canada. No Canadian Doctor can prescribe it.
  2. You cannot have it shipped to your address or it will be confiscated at the border. You must get it in the states. If you go to a regular pharmacy, it is $1152 for 100 pills. Insurance doesn’t cover this. Nothing covers this.
  3. If you order it through an online pharmacy, it will be between $100 – $400 for the same amount.
  4. There are 2 online pharmacies: Canada Drugs.com or Northwest Pharmacy. Both are located out west in Canada, but they are not allowed to sell it in Canada. Please, someone explain to me the logic in this.
  5. When purchasing through one of these online pharmacies, you need a US Postal address.
  6. All Northwest Pharmacy pages that refer to Alinia are broken and dead links. I gave them a call for a quote. $841 for $100 pills. Huh? My doc said it was $100. Oh, for the generic pill, it will be $450. Hang up.
  7. Canada Drugs.com – Cannot find this damned medication anywhere on the site. Went to online chat. Gave me a dead link again. Was allowed to place my order through chat except had to call in with CC info. Had to email the prescription AND mail in the hard copy prescription for refills. Had to email my LLMD again to mail me the prescription so I in turn can mail it to Canada Drugs. Are you dizzy yet?
  8. My prescription was for 102 pills. The rep said I can only get 54 because they are produced in India and have different regulations. 54 pills cost me $94.36. The shipping time is between 14-28 days.
  9. I need a USA postal address. I scream at my husband to get his cousin’s address. As usual, he took too long. My LLMD suggested on her sheet that I go to kinek.com. They are a postal service where you can have parcels delivered to you across the border. I quickly signed up and used their address.
  10. I am still talking to the rep on the phone. I was then notified that Alinia’s stock will not be replenished and that they may not be sold as of January 1, 2013. I ask why can’t I just get the 100 pills. Because they aren’t allowed to prescribe anything past 3 months.

What I have to do now.

  1. Drive my ass to Buffalo and pick up these meds. Hoping I don’t get arrested for possession of drugs that are not allowed in Canada.
  2. Figure out how and where I will be getting my other 48 pills when this set runs out.

Question for you.
What should I do when I pick up these pills? Stay over a few hours, “pretend” to go cross border shopping, dump all the pill packaging and put it in a regular pill box? Do dogs sniff pills in your purse? Or do I tell the truth and say I went to pick up meds because they aren’t available in Canada and risk repercussions of any kind?

Do you see how completely ASS BACKWARDS the Canadian System is and this whole convoluted mess we are in?

Seriously, acquiring a medical degree in brain surgery seems like cakewalk compared to this.

RANT OVER.

Have yourselves a very Merry Christmas!

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3 thoughts on “Death by 1000 paper cuts – Part 1

  1. Oh, do I understand what you are going through! Praise the Lord for my LLND here in BC who can prescribe me antibiotics AND constantly studies and consults with other LLNDs (very few) and LLMDs (in hiding) and keeps RECORDS so that he can HELP OTHERS and who knows what NATURAL antibiotics to add to the mix and what NATURAL supplements to keep my liver and immune system from dropping dead from all the antibiotics!

    Hang in there and keep the rants going. They are very therapeutic.

  2. Pingback: Death by 1000 paper cuts. « The Cutting Edge

  3. I have the same problem, however after speaking with the Canadian/US border… as long as you have ALL the paperwork there is nothing legally wrong with taking the prescriptions into the country! In fact they said a family member could pick this up ans long as they had ALL the paperwork and my written consent to pick up onmy behalf. Call and confirm to be sure but I’m doing it this weekend 🙂

Foggy brain or not, I would love to hear from you!

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