E31 - Hempfest Part 2 - Lyme Warrior Sue Letwin

Kirk and Trevor are live on stage at HempFest Saskatoon for a second time!  This time Trevor talks with Sue Letwin(@LetwinSue).  Sue has Lyme Disease.  She explains how this misunderstood condition effects her life and how cannabis is helping her.  In fact she finds the THC helps her more than CBD.  And she make her own edibles.  Come learn from Sue with us!


Episode Transcript

Trevor:  Hello Hempfest Saskatoon.

Kirk:  I am Kirk Nyquist I'm a registered nurse.

Trevor:  I am Trevor Shewfelt and I am the Pharmacist.

Kirk:  And we have a podcast called Reefer Medness, where we explore cannabis and ask people questions about cannabis.

Trevor:  Smart people who know more than us. So, Kirk, talk to any interesting people out there at any of the booths today.

Kirk:  Yes, you may see us gathering stories as we go. We've been visiting the various booths and talking to people with gathering stories for future episodes.

Trevor:  We talk to everything from insurance to people who grow it, to people who make the soils.

Kirk:  Brand new growopps, people who make the soils. Yeah, and insurance salesman was interesting.

Trevor:  Yeah. I'd never even thought about if you grow at home, you might need different insurance.

Kirk:  If you have a cannabis plant at home, you need to talk to your house insurance.

Trevor:  So without further ado, we have a special surprise guest for everyone today, right?

Kirk:  Yeah. You're going to be bringing on someone that we've talked to before. In our podcast, we have something that we call My Cannabis Story, where people bring us stories and experiences with cannabis. Today, we have a lady that is going to help us understand Lyme disease. The dirty little Tick that attaches you and puts a bull's eye on you gives you a disease called Lyme disease. And Sue Litwin is she's going to come and talk to us about Lyme disease and how she cannabis helps her.

Trevor:  So, Sue, come on up. Hi Sue, have a seat right here.

Sue:  Thank you Trevor.

Trevor:  Sue, I think we'll get to it later, but you've got a bag full of goodies, don't you?

Sue:  I do, actually.

Trevor:  So let's start because not everybody knows. And, you know, honestly, not even a lot of health care professionals know.  What's Lyme disease, how someone get it and what happens if you do get it.

Sue:  OK, so you can get it from a tick bite. And it's they have told us it's blacklegged ticks.

Trevor:  But that's what they told us in pharmacy school. Not true.

Sue:  Well, yes and no. They've tested a whole bunch of different ticks. And guess what? They have Borrelia burgdorferi too, which is the Lyme Bacteria, Spyrochetes.

Trevor:  OK, And, so you get a tick bite. And what happens next.

Sue:  Well, it could be not sick. Your immune system could just handle that tick bite and you won't get an infection. And what we're finding is that if people are under stress, their immune system functioning is down. That's when it kind of gets to you.

Trevor:  And, do you find that most doctors and health care professionals know about Lyme disease and tick bites if say you showed up in an emergency room?

Sue:  Unfortunately. Not. That's usually where we end up and that's where I ended up.

Trevor:  OK, so you ended up when you went to the emergency room, why were you there? Did you feel bad? If you still have a tick on you, what happened with you?

Sue:  So I never saw a tick. I never had a bull's eye rash. And the statistics, we have a ton of research we have decades and decades of research, and people don't know about this research. They haven't read it. The doctors don't learn about it. They maybe get a page in their textbooks or they have to do self study. How many doctors do you know who have the time to do that in medical school?

Trevor:  Yeah, there's a lot to learn through. Lots of stuff. It's kind of glossed over.

Sue:  So I ended up in emergency. I woke up in the middle of the night and it was about three thirty a.m. and I started to get tingles from my occipital down this side of my neck, down my arm, down this leg. And then it started on this side. My right side went down this side. I didn't used to remember this so well, but my brain's better on cannabis.

Trevor:  I know, but that must have been pretty scary. You wake up in the middle of the night, all sides of your neck and arm or tingling.

Sue:  I have never experienced anything like that before. It was really traumatic. I got really bad nausea. I went in an ambulance to the Royal University Hospital here in Saskatoon with my bowl. The paramedics, I felt bad for them because they had no clue what was wrong with me because they thought it was a stroke. But then they're like, ah, a heart attack. And they're like, but it's going to the other side of your body. We don't know what's going on with you. And my heart rate was normal. All my vitals were normal. So they were very confused. And at the hospital, they did a PET scan, and an ultrasound of my neck and they hooked me up and did heart testing.  Everything was normal and they sent me home with the baby aspirin. Instead of doxycycline.

Trevor:  So, you still got a disease. We don't know what's going on. It doesn't seem to be appropriately treated because nobody knows what it is, what would happen to you next.

Sue:  So, I was booked for an MRI. Well, first I was booked with a neurologist at the stroke clinic, and I'm trying to remember the exact name of what he said happened to me, which was totally incorrect. No, I mean, I'm not criticizing him. He had no idea. But it was something like an atypical hormonal migraine with unusual aura symptoms.

Trevor:  So, they said you have a migraine and funny hormone. So that still didn't quite fix your problem did it. 

Sue:  So, I went for an MRI shortly after that and I was having really bad tremors and I felt like my brain and my body weren't connected that week after going into emergency. I could walk upstairs and move, but my brain kept telling me I couldn't, which was really strange.

Trevor:  I'm sure.

Sue:  For a whole week that happened. And and then it kept lessening. And then I kind of went back to normal and the MRI showed I had a couple lesions in my brain, but I didn't have enough for M.S.

Trevor:  So, you still have a bunch of really weird symptoms. And they said scary things like stroke, heart attack, strange migraines, weird hormones, maybe M.S. and you're still no farther ahead. How did we actually get to the point where someone said Lyme disease?

Sue:  So, it was three years later that I got diagnosed?

Trevor:  That's a long time.

Sue:  So, I was pretty much OK, excuse me, except I started to get joint pain in my hips and muscle pain. I started to get the flu about once a week, and I started to get debilitating fatigue sometimes. So I would come home from work. I was teaching, and also cooking at a day care. Those two jobs.

Trevor:  You are very, very busy women.

Sue:  And they're both part time though. So, I just wasn't feeling very good. And sometimes I come home from work and I'd be so exhausted. I just went to bed and sometimes I couldn't really get out much till the next morning. My husband can probably vouch for that. There are a lot of meals cooked by other members of the family.

Trevor:  I'm sure, and if you know, if you literally can't get out of bed, that's, you know, how are you supposed to be doing what you normally do?

Sue:  Right. So, what happened was those symptoms were happening. But like, I was still functioning. I wasn't in bed all the time. Now is occasional. And then I started to get those migraines back again and it kind of followed my cycle. Because I'm a woman and but they started to move together. And so, I ended up with almost daily migraines and was pretty nonfunctional. And a friend of mine referred me to a clinic in the U.S. and I went down to this clinic and the first thing the doctor said to me was, hey, Sue, I'm originally from Swift Current Saskatchewan.

Trevor:  So everyone should remember that all the smart people come from Saskatchewan.

Sue:  And the second thing he said to me was, and you have to fill out an 18-page health report before you go to the clinic and the doctor reads it. Plus, I've been journaling my symptoms thanks to my husband. It was a suggestion. And the doctor said, you are my star patient.

Trevor:  See smart doctors and smart patients all from Saskatchewan.

Sue:  So he had a lot of information to work from and he said, I think you might have Lyme disease, Sue. And I really had no idea what it was, except it was from a tick bite. That's all I knew.

Trevor:  So fast forward to today and we'll get to the Cannabis because that's what we talk about the most, but what finally worked for you for  treating your Lyme Disease?

Sue:  I started to get better little by little. The first thing the doctor did was to put me on some thyroid medication. And down at that clinic, they specialize in hormones and Lyme disease and things like fibromyalgia, chronic fatigue syndrome. So, they've developed some treatments that have been working well for their patients and they've developed a special thyroid medication. The pig thyroid comes from the same place, whether it's Canada or the US, I found out. But the formulations can be quite different and I think they put a mix of probiotics in there. It's liothyronine. Its a T3 and often we get T4 first here. I think.

Trevor:  You're right.  Your standard of thyroid pill in Canada would be T4. Yeah, there's other people other than Lyme patients that find they do better with a different type of thyroid hormone called T3. So how does cannabis fit into your Lyme story?

Sue:  So this doctor, he does alternative treatments too. So he gave me the thyroid medication and a bunch of herbs, which helped a little bit. Then I went back the next year and I did 16 treatments of ozone, UVBI, Glutathione IV.

Trevor:  OK and better or worse.

Sue:  It did help. And then I went back home and he and a nurse friend helped me do interstitial Glutathione. I don't know if our listeners know about all this stuff.

Trevor:  That's OK. We're all learning together.

Sue:  Ok. And when I was down the second time for treatments, we talked about cannabis and he said it can be quite helpful for Lyme patients.

Trevor:  And what did you think at this point? Because were you ever a cannabis user recreationally?

Sue:  No, I was a cannabis virgin.

Trevor:  And so did it kind of freak you out a little when it said, well, you should try cannabis for this?

Sue:  Well, no, because my son actually did a paper, I think, in grade 12 and he got 99% and he talked about cannabis and he showed us a couple videos. And so I think I was kind of primed for the doctor. I was, my attitude about it had kind of softened, I guess, a little bit. And the doctor gave me some hemp CBD, like medical grade CBD. All that did was kind of help me sleep, but it didn't help my other symptoms. And I had applied, at CannaMed when I got back and I started with their 120 oil, which is high CBD.

Trevor:  Right. So one part THC to 20 parts CBD so mostly, mostly CBD.

Sue:  Right, because I didn't want the intoxication. I wanted to be able to be functional because I had been so nonfunctional and my brain wasn't working. I had brain fog, I had fatigue. The last thing I wanted was to be intoxicated by THC.  So CannaMed people were really good. And they helped me with dosages and with ratios and they stripped the Terpenes out of their oil. So I was working strictly with THC and CBD at this point. Now I'm getting into the Terpenes. So, slowly I move to mostly THC and that's when everything went to the better. It was amazing.

Trevor:  And that's really fascinating because even medically we talk we talk about CBD a lot and CBD is anti-inflammatory and CBD helps, you know, X, Y, Z, you know, and you're you were finding that it's actually the THC that's for the medicinal and for you.

Sue:  Yeah. And CBD can give me more symptoms when I travel so it can give me muscle pain. I put the CannaMed topical which is a 1:1 and I got really bad nerve pain. Which I've talked to other Lyme patients and some of them also get nerve pain from using too much CBD. We tend to do better on 1:1 ratio or more THC, but in teeny weeny tiny amounts.

Trevor:  So and because it's touches on all these lovely little containers in front of you and I know another passion of yours, you get a lot of the cannabis products in to you by cooking them right, you enjoy cooking and you have been making your own edibles for quite a while. Is that how you're usually getting your cannabis into you now?

Sue:  Yes, I mostly use my own homemade edibles. And usually what I do is just WRAP  ingredients around decarb.

Trevor:  OK, now we had a cooking episode a little while ago and we were decarbonize virgins, we're trying to figure out what we're doing. So explain why you and how you need to decarb something before you cook with cannabis.

Sue:  OK, so the cannabis plant, when it grows and if it's high THC plant, it will have THCA, which is the acid form. And you want to turn it into the other form, which is THC. And the only way you can do that is by heating it. And even if it sits out in the field, you might get some THC if it sits out too long. But most of our medical cannabis is grown indoors and regulated. So.

Trevor:  So how do you describe your flower before you go with it?

[00:16:36] So I use Hempster recipes <Hempter.co>.  So they're a really great resource for cooking. So I found all of their stuff has been the best and I've tried different temperatures for decarbing, different times. But the 40 minutes add 240 degrees Fahrenheit seems to be perfect for me.

Trevor:  And that's just like on a cookie sheet.

Sue:  Um, I usually put it in a little Emil Henry fancy custard cup when I can do five different varieties because I have or six because I have six little custard cups, and sometimes I'll put parchment and then foil to seal it because some of the Lyme patients are concerned about getting too many heavy metals in their body. So I get really technical.

Trevor:  Oh that's good. That's why we have you up here. The teach us stuff.

Sue:  Yeah. And then I take the cannabis out of the oven and I let it cool so that Terpenes can settle back into the cannabis and then I put it between parchment the buds and roll it with a rolling pin because the trichomes don't stick to the parchment. I figured all this out by myself.

Trevor:  Oh no, you did great. And you're teaching us about it. Honestly, I'll be completely honest, I didn't know what a Trichome was probably four months ago. So other people have been even teaching what at Trichome is, so the fact, you figured out how to cook with them is great.

Sue:  Yeah. And that's where most of the chemicals are, the concentration and the chemicals. So, um, so then I just kind of slide it off into the bowl, mix it with the other ingredients, make little protein balls and I usually take one of those. Now that I've had a cannabis tolerance break in the last few weeks. Oh my goodness that was brutal. Four days long.

Trevor:  So you, so you took a break from cannabis for four days. What happened.

Sue:  I went back to full blown Lyme in four days.

Trevor:  Wow. That's fast.

Sue:  I was on the couch. I can't open my eyes. They were watching the Raptors game and all the reds and the movement and the noise. I couldn't look at the screen. So I had to close my eyes for a while.

Trevor:  All of Canada was celebrating. And you weren't. That's too bad.

Sue:  But, I was scaring my family.

Trevor:  Well, they're concerned about you.

Sue:  So I decided, well, that night I went to sleep. I was going to wait till the next day to Medicate. And I slept for an hour and woke up and I was in so much pain and I was wide awake. So I took one of these really great Questspirit caramels that I've made.

Trevor:  OK, so tell us about this. So Sue, of course, brought baking because that's what she does. Yeah. So I'll hold this up for the audience to see. So this looks like a lovely piece of chocolate kind of fudge stuff.

Sue:  It's sea-salted caramel,

Trevor:  Sea-salted caramel. It even sounds fantastic.

Sue:  They really are.

Trevor:  Maybe when I note on the stage, I might taste one of theses. They even smell good.

Sue:  And this has been my best variety of cannabis so far. It's Questspirit. And I got it at Kiaro. They have a booth here and I'm working with them.

Trevor:  So a free shout out to Kiaro. Sue really likes them.

Sue:  And of course I use Strainprint.

Trevor:  Yeah and we like Strainprint,.

Sue:  We love Strainprint.

Trevor:  And we always talk about using it as, as a diabetic log for your symptoms, what you actually do use it.  How does Strainprint, the app, make life better for you as a patient.

Sue:  Well, when I was first starting out with cannabis, it was really great because it made me focus and try to figure out what was working for me. And now I find they don't use it so much because I know what works for me.

Trevor:  But at the beginning, being able to log, it was good.

Sue:  It was excellent. Really good. And I also volunteer with the community.

Trevor:  Yeah, I've seen your posting on there. They're always insightful.

Sue:  Yeah. And Joy and I we talk cooking. .

Trevor:  We saw a video she put up about making cannabutter in a slow cooker.

Sue:  I do a Sous Vide and I've checked with the chefs.

Trevor:  Of course, you use a Suvee.

Sue:  A Sous Vide.

Trevor:  Sous Vide, Sorry.

Sue:  But I'm learning there's other better ways I'm going to get into that next. So, maybe... Next time we talk.

Trevor:  Next time talk Sue, will give us a cooking lesson and we can we can share that with everybody. Sue, thank you very much for agreeing to come up here. Anything else you think the audience needs to know about Lyme disease or cannabis or both?

Sue:  Well, I don't want to end on a sad note, but we lost one of our patients to suicide in the last couple of days.

Trevor:  And that's terrible.

Sue:  And that's the most prevalent cause of death among Lyme patients. So I want to educate and change the statistics on that.

Trevor:  And I think you're doing that. I think you educate everywhere you go.

Sue:  And we're going to do some more stuff, right?

Trevor:  Abolutely. We're going to do more. So how about everyone gives Sue Litwin a big hand.

[00:22:11]  Oh, sorry, I forgot. Does anybody have questions, especially for the brilliant Sue while she's up here? Questions for Sue, especially about cooking. Sue knows cooking? Well, the audience the audience is stunned into silence. And I was told to bring. So Kirk just asked, I don't think you want to hear that. What is a cannabis tolerance break and why did she do it?

Sue:  So I was finding my medicine wasn't working as well as I wanted it to work. And when those receptors get full up, you kind of have to take a rest from cannabis. So I have been taking about half of the dose I was taking before my break.

Trevor:  And if I think that that's helpful to take a break, it sort of makes it work better.

Sue:  It was rough, but it's allowed me to bring down my dose and make the medicine more effective. Yes.

Trevor:  Thank you very much. I thank you, Sue. Another round of applause for Sue, because while Sue deserves a round of applause, Kirk is coming back up here. So we'll trade spots, so.

Kirk:  Well, thank you very much Sue. She is taking her baking. So Reefer Medness - The Podcast, and you can find us reefermed.ca. Our Web page is right behind us.

Trevor:  And all podcasting platforms out there. So that was another live podcast from Saskatoon Hempfest.

Kirk:  Yeah. Thank you very much for inviting us to the Hempfest Canada and Saskatoons, very city.

Trevor:  We've got a great time at Hempfest. Hope you guys get to. And I hope everybody learned something. Kirk, it's been another good one.

Kirk:  It's been another good one. And we're going to be playing some Saskatoon music. If you're familiar with our podcast, we play music at the end. So the songs that you will hear will be a Saskatoon Artist

Trevor:  I have a good day.

Kirk:  Cheers.

Rene:  Well, there you go. That was Trevor and Kirk at Hempfest in Saskatoon. Definitely another good one. And as far as the music goes, trying to keep the music local as we always do. And so music from Saskatoon. But we can link it back to Dauphin because this band has actually performed at the Watson Art Centre in Dauphin. So we're going out with the Sheepdogs. And stay tuned. We have another episode. Part three of the Hempfest visit where Trevor and Kirk go around and visit a variety of different vendors until next time...


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