June 16, 2025 • 38 mins
The tiny creatures lurking in your backyard could change your life forever. Shira Haid knows this reality all too well, having battled severe tick-borne illnesses that left her unable to walk or speak. Today, she's turning that painful experience into purpose through her educational platform, Lemon or Lime.
What began as a website has blossomed into a YouTube channel and growing social media presence dedicated to demystifying tick-borne diseases like Lyme, Babesia, and Bartonella. Shira's mission is clear: provide the resource she desperately needed during her own diagnostic journey that took three years and left her disabled.
Throughout our conversation, Shira shatters dangerous myths about tick-borne diseases. The CDC's claim that ticks must be attached for 36-48 hours to transmit disease? False – some infections can transfer in just 15 minutes. That famous bullseye rash everyone associates with Lyme? Only 20-30% of patients ever develop it. And the notion that ticks only exist in wooded areas of the Northeast? Wrong again – they're virtually everywhere except Antarctica, including desert states at higher elevations.
Perhaps most alarming is Shira's discussion of co-infections and emerging threats like Alpha-gal syndrome, a tick-transmitted condition causing potentially life-threatening allergic reactions to mammalian products – including medications. With 70% of pharmaceuticals containing mammalian ingredients, this presents a frightening challenge for affected patients.
For those concerned about prevention, Shira offers practical advice: treat clothing with permethrin, use Picaridin lotion on exposed skin, perform regular tick checks, and maintain shorter lawn heights. Hunters and hikers should consider specialized clothing with elastic cuffs that prevent ticks from accessing skin.
Connect with Shira on YouTube and Instagram @LemonorLime (remember, that's Lyme with a Y!) and join her mission to raise awareness about these devastating but preventable diseases.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
Let's Get Started - Rare Patient Voice
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/
Discount Codes:
GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters, and today oh,
I'm excited about this we arebringing Shira Haid back with
Lemon or Lime for part two.
Hello, Shira, Jen hi, Hi.
And Linnea, the co-host, isback as well.
We have so much great stuff totalk about, so I'm just going to
dive right in Now.
(00:20):
Recently, you launched Lemon orLime, which I love the name,
and when people get to see thevideo version of this, they get
to see your backdrop, which isamazing.
I love it.
It's so cute, it's so cute,thank you, Can you tell us what
inspired you to start this vlogand what has the response been
(00:42):
like since launching in January?
Speaker 2 (00:45):
Yeah.
So once I was finally diagnosedwhich took three years to get
diagnosed, I would you know.
Whenever I went to a doctor'soffice or my parents had to get
together, I would start tellingpeople like this is what I have
and this is what I'm beingtreated for.
And what I kept finding overand over again was that people
were really curious and they hada lot of questions and
(01:08):
generally everyone was prettyinterested in the topic.
So when I would be talking to anurse or I'd be talking to one
of my parents' friends orsomething, whenever the
conversation ended I always feltlike there was more.
I wish that I had more time totell them everything that I
thought they should know.
And I kept thinking if only Ihad like a website or something
(01:31):
that I could say here if youwant to learn more, go to my
website.
So Lemon or Lime started as awebsite and I was working on it
for two years and then finally,a friend of mine was like what
are you doing with a website?
Just put yourself up on YouTubeand you're done.
And I was like, yeah, thatwould be easier.
So that's how Lemon or Limeended up a YouTube thing.
(01:52):
I'm just launching theInstagram account.
Now there's been a lot of thatand I'm really glad because this
isn't just for people withtick-borne illnesses, this is
for everyone.
I've had a couple people say tome you know, I would love to
share your video, but I don'tknow anyone with Lyme disease.
(02:14):
I always say it's better tolearn some of these things
before you get sick and toprevent getting sick, because
understanding about ticks,understanding their habits,
where you can find them, thosesorts of things that will keep
you and your family safe fromgetting one of these awful
diseases.
So this, the channel andeverything is really for
(02:38):
everyone.
Speaker 3 (02:39):
You know I love that.
That.
It is for everybody, because somany of us chronic illness
people like to be out hiking andit's so important even for us
to be aware of the tick-bornediseases because it could make
our already current chronicillnesses worse.
So I love that you're gettingthat information out there.
Speaker 1 (02:59):
Yes, and I agree with that, because even if we don't
see the ticks, it doesn't meanthey're not there.
Oh my God.
Yeah, I mean, I grew up inIdaho.
I now live in Washington.
They're there.
Just because I have had theluck of not actually seeing one
doesn't mean they're not there,it doesn't mean I don't need to
put in precautions.
So that's something we all needto be educated on.
Speaker 3 (03:23):
Even in Arizona.
When we say we're in Arizona,you think desert, right, we are
campers, we are hunters, we arein the forest, there are ticks.
We are doing checks all thetime because it doesn't matter
Wherever they can breed, theywill breed, and Arizona included
.
People don't realize that.
Speaker 2 (03:44):
Yeah, I'm so glad you mentioned that.
I actually have a couple offriends in Arizona and one of
them always says to me you gotto come, you got to come, move
to Arizona.
There's no ticks here, butthere are.
Speaker 3 (03:56):
There are.
Maybe not in Phoenix, whereit's 150 degrees in the summer.
Right, there are ticks here inthe higher elevations.
It's not yeah I get annoyedwith people you might have to do
with thinking arizona is justdesert, because we actually have
different climates and so we dohave ticks, flagstaff, sedona
(04:18):
so yeah, what are?
What are your goals for lemonor lime and how do you hope it
will impact the chronic illnesscommunity?
Speaker 2 (04:27):
Really hope to be a place where people can go to get
answers, to get complexconcepts explained and broken
down, because there's a lot of,a lot of different topics within
the tick-borne disease umbrella.
You know, if I imagine how Iwas when I was first researching
(04:48):
all of this stuff, if youGoogle what is Lyme disease or
what is Babesia or what isEhrlichiosis, you're going to
get millions and millions ofanswers and it's going to be
difficult to weed out what isaccurate and what is not.
And there's a lot ofinformation that's out there
that even from agencies like theCDC and the NIH that are
(05:11):
outdated.
You know CDC is still sayingthat a tick needs to be attached
36 to 48 hours for you to getsick and that's not true.
That's not true at all.
It can be a couple hours.
Something like Powassan viruscan be transmitted in 15 minutes
(05:32):
.
So the fact that the CDC says,oh, it has to be attached for 36
to 48 hours, that's not true.
It really the clock startsticking once the tick attaches
and the tick can attach prettyquickly if it wants.
Let's say you are hiking orsomething.
(05:54):
A lot of times they say stay inthe middle of the trail, don't
rub up against the grass and thefoliage on the side, that's
true.
But even if you're in yourbackyard or your front yard
gardening, they can be there too.
One of the main vectors for or,I'm sorry, hosts for Lyme
(06:14):
disease and a lot of these otherillnesses are white-footed mice
, and mice tend to be around ourhouse because they're attracted
to garbage and food and thingslike that.
Even if you're not in a woodedarea and you're in a subdivision
or something, there can stillbe ticks in your yard.
I know it's creepy, it's supercreepy.
(06:38):
Even after all this time, ticksstill gross me out.
They do.
But we have intentionally leftour backyard kind of blank.
I would love a beautiful garden, but it's just.
I always think about my dog offleash and running about and she
may put her face in a bushtrying to find a ball or
(07:02):
something like that.
So we have left our backyardblank, just so that ticks don't
have a place to hang out andwait for either me or my dog to
brush by, because that's whatthey do.
They can wait, you know, andthey do this thing called
questing Like.
Think of a little kid who isputting their arms up asking to
(07:24):
be picked up like that Ticks dothat on the very tip of a blade
of grass, like that's all ittakes wood just to de-stress.
And I said to him I said youbetter watch it, because ticks
(07:50):
like to hang out in wood piles,it's good shelter for them, and
he kind of like, eh, whatever.
But these are things that areimportant to know so that you
can avoid these areas.
Speaker 1 (08:02):
Just by listening to you, I have now given myself
more and more permission to nolonger mow my yard.
There we go.
Yep, this has been my task forI don't know how many years.
Ever since Linnea met me, I'vealways been the one to mow the
lawn.
My husband sometimes works longhours.
I thought it was exercise.
He's now doing it.
I think I'm going to leave itthat way Because I've got enough
(08:25):
health concerns.
I think I'm going to leave itthat way Because you know I've
got enough health concerns.
I don't need to add to the list.
Speaker 2 (08:29):
Yeah Well you know what Cutting your lawn regularly
actually helps to keep yourproperty clear of ticks?
Speaker 1 (08:38):
Okay Well, we do one twice a week.
Speaker 2 (08:40):
So that's good to know, that's amazing.
Then that's amazing.
Then, like I don't know aboutyou, but my dog, she's always
rolling in the grass and stuff,but if the grass hasn't been
mowed in a while, you know,freak out Like don't roll, don't
roll.
Speaker 1 (08:54):
Well, and that's why we don't let our cats outside.
We have indoor cats, becausehe's just like you know what.
There are way too many thingsthese cats can get, you know.
Let's just keep them healthy.
They're staying inside thehouse.
Right, right, and it was enoughfor our dogs.
Speaker 3 (09:08):
We have right, yeah, because we, we, where we live,
is just rock so we have so webut we have pine trees still.
We still have to be careful ofthe trees and on the pines, even
though our backyard is safe, westill have pine trees in the
area.
Yep, yep, we have one pine treetoo.
Speaker 2 (09:27):
Yeah, yeah, the ticks will kind of grab onto just
about anything.
So, and when they are babyticks, which, if to give you a
frame of reference, it's likeone poppy seed or a half a poppy
seed, that's the size of them.
So you really, when you if youthink, oh, I'll see it, I'll see
(09:47):
it if it ever gets on me, youprobably won't.
And another thing that I reallyshould mention is a lot of
people have heard if you get bitby a tick you're going to get a
bullseye rash.
It's important for everyone torealize that only 20 to 30% of
(10:09):
people with Lyme get one ofthese rashes.
So that means 70 to 80% ofpeople never got one, never get
a rash.
And that's one of the reasonswhy it takes a while to diagnose
, because if the rash doesn'tshow up on somebody, you're kind
of guessing.
Speaker 1 (10:27):
Yeah, and my guess is that you never noticed anything
.
Speaker 2 (10:30):
There was never a rash for me, and that was both
times.
And, by the way, both timescats were involved and when it
comes to some diseases otherthan Lyme disease, there are
other blood sucking vectors likefleas or lice that can transmit
many of these diseases.
Speaker 1 (10:51):
I'm giving you the creeps.
I just hate bugs in general,and so the more we talk about
this, I'm just like, oh, this iswhy I hate them, I just do.
Speaker 2 (11:01):
I know, and if any of your listeners I'm over here
going yep, yep, I'm good, I know, and if any of your listeners
enjoy caviar, I would suggest tonot Google what tick eggs look
like.
If you like caviar, don't do it, because they look like caviar.
Speaker 1 (11:19):
Yeah, I'm so grossed out right now, yeah.
Speaker 3 (11:22):
I know I wasn't eating caviar anyways, I'm
really not eating caviar now.
Yeah, I know I wasn't eatingcaviar anyways, I'm really not
eating caviar now.
There's my real excuse fornever touching it.
Speaker 1 (11:30):
Well, I don't go out of my way for it, but there have
been events where they sprinkleit on on some kind of thing
that they're walking around with.
You know, they're walkingaround and they're giving you
all these things and you're like, oh, I'm one of those people,
all these things.
And you're like, oh, I'm one ofthose people.
I'm like I'll try everythingonce.
Speaker 2 (11:45):
I guess Not me, and now, I just ruined it for you.
Speaker 3 (11:47):
Close my eyes, it's not there, right, my husband
struggles to get me to trythings.
Speaker 2 (11:56):
That's going to be one of the things I will never
try, never try, yeah, yeah,right.
So a couple other things abouttics, though, because I think it
is important for everyone toknow a little bit about ticks,
because the more you know aboutthem, the better you can protect
yourself from them.
One thing that I think everyoneexperiences now is less harsh
winters.
Certainly, in the Midwest here,we haven't had winters kind of
(12:20):
like the ones that we had when Iwas a kid Like I remember it
being freezing for weeks andweeks and weeks on end, but it
doesn't do that anymore, and oneof the consequences of that is
that when the temperature goesabove freezing, ticks come out
and they're active again.
So they're still around.
(12:40):
They're still around fromprevious seasons.
Speaker 1 (12:44):
And now I'm thinking of all the people out there
hunting linea.
Speaker 3 (12:48):
Yep, sorry, okay so I will have.
I will tell you are.
We have a very certain way wedress when we hunt and how do
you?
Dress reasons.
Well, other than it being cameland really heavy, warm, my
overalls have elastic that goaround my boot so nothing can
(13:08):
come up into my pant leg.
Speaker 2 (13:11):
Okay.
Speaker 3 (13:11):
Okay, we wear layers of socks, then we have layers of
other stuff under, but our mainpants that go over all have
elastic where it goes around ourankles, around our boots,
because our boots come up overour ankles.
That way nothing can get up inthere.
(13:32):
It's like our sleeves areelastic around here and then
they velcro.
That's not only to keep ourgloves in our sleeves for warmth
, it also protects anything fromcrawling, because I sat in a
blind last year for my elk hunt.
So I'm sitting in woods coveredby wood and leaves and
(13:52):
everything, and I'm sitting onthe ground on a heated thing.
It heats up when you sit on it.
It's a hunting thing.
It's really cool.
I really should show it forchronic illness people because
it heats up as you're sitting onit.
So in the forest, that's what Isaid.
But there's still chances oftick, because there was a few
days of.
It was really nice, it was inthe 70s, guess what.
(14:14):
Everybody's out, everybody'sriding.
Those ticks are now really,really moving and they're on the
deer, they're on the elk.
So we're very careful.
I will tell you, none of ourelk have had ticks on them when
we Okay, I would recommend we'revery cautious, we spray, but I
(14:34):
don't think hunters and hikersunderstand the importance of how
they dress when they go do thatkind of stuff.
Speaker 2 (14:41):
Yes, I mean, I know that you're in camel, but is it
if you're in darker colorsyou're less likely to see
something if it does crawl onyou?
Speaker 3 (14:50):
and you know, even if you're you want to shake up, we
will shake off like okaynormally it's like 30 below.
It feels like up there, so it'scold.
This year it was warm, so wewere more cautious about the
bugs and the snakes and all thefun critters that come out when
it's warm.
So normally in hunting season,it's cold.
Speaker 1 (15:13):
And hopefully you're helping each other.
You know, checking each other,brushing each other off and
stuff.
Speaker 3 (15:18):
Yes, yeah.
Speaker 1 (15:19):
Yes.
Speaker 2 (15:20):
It's just important.
Yeah, definitely, tick checksfor other people, tick checking
your dog, if you have a huntingdog with you.
One thing that I like to useduring the summer last summer I
went to a couple concerts whereI was going to be outside with a
(15:41):
picnic blanket and all of theclothes that I plan on wearing
in something called permethrin,so it is a tick repellent.
So I treat all of the clothessocks, jeans, sweater,
everything in this permethrin.
And then I get there's this.
It's almost kind of like alotion called Picardin and
(16:04):
that's safe to put on your skin.
So those are things that I useand those are specific to ticks
of actual tick repellents.
Yeah, absolutely, absolutely.
And I also recommend youabsolutely you can drench it.
Yes, it is unscented and itdoes last for more than one wear
(16:27):
.
So if you, if you do yourhunting gear, you know, soak it
in permethrin, it'll be good foryou know a few uses, it'll be
safe for that.
Like, yeah, and like you, yeah,and like you said, long shirt,
pants, closed toed shoes,tucking your sock, your pants
into your socks, socks, thoseare all.
Speaker 1 (16:48):
Those are all good preventative measures that you
can take now you're starting toconnect with more groups as your
health has been improving.
How has that sense of communityhelped you in your journey?
Speaker 2 (16:59):
it has helped a great deal.
At first, again, when you're inthat deep dark place, you think
I don't need anybody I'm fineof.
When you're in that deep, darkplace, you think I don't need
anybody, I'm fine, of course,you're anything but fine.
So the community that I foundis online, because a lot of
people with tick-borne diseasesare homebound or bedbound, so
we're really not out and about.
(17:21):
On top of that, the fact thatthere aren't really a lot of
in-person support groups thatare easily accessible, like
something like breast cancer orParkinson's things that you may
be able to find in yourcommunity.
The online community is where Ihave found people.
The one that I frequent themost is, of all places, on
(17:45):
Reddit.
I've kind of become a Reddithead since then and if you're
not familiar with Reddit, redditis literally anything that you
can think of, whether it's youlike funny cat videos or you
like politics, or I love theshow Friends, so I'm on a
Friends subreddit.
There is a subreddit foreveryone, and so I found people
(18:07):
with Lyme disease and othertick-borne diseases and it's
really nice.
I think.
For the most part, everyone ispretty supportive and helpful.
Of course, there's going to bea bad apple here and there, like
every community, every onlinecommunity, but people, you know
people go on there and they vent.
(18:27):
People say you know I don'twant to be here anymore, or this
is too hard, or you know I haveto ingest a disgusting drink.
How do you guys do it?
You know asking for advice, andso it's.
It's really nice to be able totalk to other people who are
going through the same thing asyou.
Speaker 1 (18:47):
I could not agree more.
And that's actually how thepodcast started.
We started out as a communityand then, next thing you know,
it's a podcast and it's a blogand now we're on YouTube.
I mean, that's just how itgrows, because there's a need
out there and we need to fill itand people need that support To
go with that.
We don't always want a placewhere it's only complaining
Sometimes.
We want a place where, yeah, wecan vent about things, but we
(19:11):
want to hear tips, tricks,support and guidance, and to me
that sounds like what you'redoing and that's great.
Speaker 2 (19:19):
I'm definitely going to be trying to cover a lot of
the nitty-gritty stuff, like youknow, what is Lyme at a
microscopic level, or what isgood prevention, like we were
just talking about but alsotalking about mental health,
which I think gets pushed downto the bottom of the priority
list when it comes to tick-bornediseases, you know, because
(19:39):
we're dealing with all of thisphysical stuff that a lot of
people don't understand, somental health does kind of get a
backseat in the conversation,but all of it is so important
because all of it makes up ourhealing journey?
Speaker 1 (19:52):
Absolutely, and it all blends together.
We need to take care of everyaspect of ourselves, not just
one or the other.
Yes, now, do you prefer to seeLemon or Lime becoming a
profession or keep it more aslike a passion project?
Speaker 2 (20:07):
I mean it would be nice to have it become a
profession and earn a livingdoing this, because I don't.
I'm on disability.
I've been on disability forseveral years, so that's the
only income I have, and so itwould be nice for this to turn
into something bigger and to bethe place to go to get
(20:28):
information and to connect withother communities.
Like you guys.
That's what I'm hoping for, butright now it is a passion
project and so I'm fine withthat.
Speaker 1 (20:39):
Absolutely.
I think passion projects areneeded.
I don't know about you, but Ican tell that you glow and your
excitement when you're talkingabout it, and I always worry
once we move out of it being apassion and to more of a job,
are we going to lose that sameexcitement and vibrancy that we
have?
Speaker 2 (21:00):
Yeah, I did think about that and I even told when
I did launch, I did tell mytreating practitioner that you
know, oh, my YouTube channel isup.
And she was like, can I behonest with you about something?
And I said, of course.
And she said I'm worried thatby doing this vlog, by doing
(21:22):
this channel and having this youknow brand or whatever, that
it's going to become youridentity.
And she said, and I don't wantthis to be your whole life.
So I said to her I hear whatyou're saying and I understand
where you're coming from, butthe way that I see it is, I'm
helping people, I'm being what Ineeded when I first got sick
(21:45):
and there is a need for someoneto be out there explaining these
things and someone who's beenthere and is still there.
But I did tell her.
I said I promise you, if itdoes become too much I'll let it
go, but the way that it isright now, there are so many
things to cover.
I mean, I have endless lists ofthese are all the things that I
(22:08):
want to do on Instagram andthese are all the things I want
to do on YouTube.
It's like I made sure the yearsbefore I actually launched that
there was going to be enoughfor you know to talk about,
because I wasn't sure Like whatif I you know I've run out of
things to talk about Turns outit's endless the amount of
things, because there's alsocontinuing research and things
(22:29):
like that, so there's alwaysnews, absolutely I agree, and,
like you said, it'sever-changing.
Speaker 1 (22:35):
There's more information coming out, and
sometimes it's okay to evenbring back the same material and
bring it up again, becausesometimes we need to drill it in
our own brains and in others,and so they might need to see it
in the same material inmultiple ways.
If that makes sense, yes, oh no, it totally does.
Now.
What does a successful day looklike for you in the now?
Speaker 2 (22:56):
So I still deal with more bad days than good, like
the way that I look right nowprobably don't look sick.
Whatever sick is A lot ofpeople you guys get this.
Oh, you don't look sick all thetime, right, all the time so,
especially when I have my makeupon.
I got my contacts in, I got myhair done, but it is still a
(23:18):
struggle.
I haven't really found a goodschedule yet where I'm able to
work every single day.
I actually got off of severalweeks it was about a month.
All of March was a flare-up, soI couldn't get anything done and
a good day for me is filming orresearching or writing.
(23:40):
I've also been trying tocomplete.
There are these two conferencesOne is a Lyme and Associated
Disease Summit and another oneis a conference just about
alpha-gal syndrome, which is akind of a meat allergy that's
emerging.
That's one of the co-infectionsthat is gaining a lot of
traction lately because it'sspreading, so I wanted to learn
(24:02):
more about that.
There's always something to do,but I'm still at a place,
health wise, where I'm just notable to work every day, so I
just work when I can that right?
Speaker 1 (24:14):
there is a great segue, because now what I want
to ask you is what's one thingyou wish people understood about
living with tick-borneillnesses and chronic conditions
in general, and I want to bringup co-infections, yes, things
that I wish people understoodwas that these diseases are
serious.
Speaker 2 (24:33):
This is not like a cold, this is not the flu.
These are life-alteringdiseases.
These diseases handicap people,make them disabled.
I couldn't speak, I couldn'twalk, I couldn't walk.
I still have trouble being onmy feet for more than 10 minutes
, and that's in contrast to theway I used to be, which was I
(24:58):
was on my feet all day as aclinical massage therapist, all
day and I never thought anythingof it.
And it's not until you lose theability to do something that
you start to realize how muchyou miss it.
But these diseases are serious.
Tics are everywhere.
I mean, unless you're on avacation in Antarctica, there's
going to be tics near you, youknow.
(25:19):
And there's people who gooverseas thinking, oh, there's
no tics here, it's just inConnecticut.
They're over there too.
And I don't tell people this toscare them.
I tell people this to informthem that all of these ticks
carry different diseases.
And when you look at a tick,you can't tell what it has, and
it's not until it starts feedingthat it starts to inject the
(25:44):
contents of its belly into you.
So I kind of call it tickroulette, because you never know
what the tick has.
It's kind of a gamblingsituation.
And another thing I mentionedearlier is a rash doesn't happen
to everybody.
Not everybody gets that classicbullseye rash and a lot of
(26:04):
people don't get a rash at all.
Some people also sometimes geta rash and it looks like
something else, like hives or anallergic reaction, kind of
spotty.
So if you go to a doctor,they'll say, oh, that's not Lyme
, because that's not an erythemamigrans rash, that's not a
bullseye rash, so you must havesomething else.
What I also wish that I knewearlier was that the average
(26:28):
doctor doesn't really knowanything about tick-borne
diseases.
I wish they did, and that isone thing that needs to change
and I hope I can change it bybringing it to everyone's
attention over and over.
Yes, yes, co-infections are abig part of what makes people
with tick-borne diseases or Lymedisease have persistent and
(26:50):
chronic symptoms.
It's a big part of the picturethat is very misunderstood.
And co-infections are two ormore pathogens in one patient.
That's what a co-infection is.
And so, let's say, you get Lymedisease from a tick.
You also, like me maybe,started playing with feral cats
(27:12):
just because they're cute, youknow, and you don't notice any
ticks.
You don't notice any fleas orlice, you know, because all of
those bugs are very, very tiny.
Or you pick up the cats and Iliterally have a picture of my
2014 infection and of course, Ididn't know at the time, but I
(27:32):
have pictures with the cats.
I was visiting a barn and thesetwo cats were following me
around and I'm an animal lover.
So towards the end of my littletour of this barn, I knelt down
and started petting the catsthat had been following me and
weaving in and out of my legs,and I picked one up.
(27:54):
I don't know how many weeks ora few months later that I
started getting symptoms, butthat's all it takes and it's
really crazy that you know, Igot three things.
I got what's called the threeBs Borrelia burgdorferi, which
is the Lyme disease, bartonellaand Babesia.
Babesia is considered a parasite.
(28:15):
Some of these co-infectionsdon't just come from ticks Ticks
.
Usually, the Lyme disease ispretty much always going to come
from the ticks.
That we know because,apparently, ticks' bodies are
better equipped just the waythat they're structured.
They're better equipped attransmitting Lyme disease as
(28:38):
opposed to like a mosquitoMosquitoes, for instance, have
been found to have Lyme diseasein them but because of their
body structure and the way thatthey suck blood, as opposed to
ticks.
They're not transmitting theLyme disease like the ticks do,
but something like Babesia, or,yeah, babesia, for instance.
(29:00):
This is a big co-infection and abig issue.
That isn't just from ticks.
People are getting Babesia fromblood transfusions.
They're getting Babesia fromorgan transplants.
So it's not just ticks.
Even mother to baby congenitaltransmission is happening with
Babesia.
Now the government knows theyare aware that blood is in their
(29:25):
blood banks and some of it hasBabesia, some of this blood.
So imagine for a second you aresick, you are on a transplant
list.
You finally, finally get thecall that you have an organ
waiting for you.
You get the organ transplantand then you start to get sick.
Imagine that.
(29:45):
I mean how awful, is that?
Speaker 1 (29:47):
Yeah.
And then I'm over here thinking, weighing the cost right Is it
worth getting this organ or thisblood because it's going to
help X, Y and Z?
Is it worth the risk of gettingthis and then trying to heal
from it?
Yeah, yeah.
Speaker 2 (30:06):
I mean, you know, and a lot of these blood
transfusions and these organtransplantations, these are
life-saving procedures that arehappening, right, and I think
that it's different by state.
Some states are more vigilantwith their testing of the blood
in their bank or the organs thatare, you know, waiting to be
(30:26):
transplanted or whatever, butit's in the literature and they
know that people are gettingBabesia this way.
Yeah, and most people are notaware of this.
Speaker 1 (30:36):
Okay, you had mentioned earlier about meat.
Is that one of the ones that isfound in meat too, or is it
another one?
Speaker 2 (30:41):
So the meat.
One is called alpha-galsyndrome.
Alpha-gal is you may have heardof a red meat allergy, but it's
not technically just red meat,it's mammalian meat and
mammalian products.
So when people get, it'softentimes the Lone Star tick
that does it.
(31:01):
There are many, many differentspecies of ticks.
There's over 900 species ofhard and soft ticks.
They come in two categorieshard and soft 900 species and
there's about 100 species ofticks in the United States.
So the lone star is the onethat they're finding is
(31:24):
prominently transmitting thisalpha-gal syndrome, transmitting
this alpha-gal syndrome.
So what happens is they developalmost like an allergy, but it
doesn't behave exactly like anallergy, like if you're allergic
to nuts, for instance.
The reaction comes almostimmediately right.
That's usually what a foodallergy is.
(31:45):
Alpha-gal.
On the other hand, it can takehours for the reaction to happen
and people are gettinganaphylaxis.
People are dying because theysuddenly get this allergy and
maybe they're not aware of whatit is.
So it's not just red meat, it'smammalian meat and also
(32:07):
mammalian products.
So collagen or gelatin thinkabout how many medications and
supplements have gelatin in thecapsule.
People who get alpha-galsyndrome cannot ingest those
things anymore.
Some people are saying thatit's curable.
(32:27):
Some people are saying they'renot sure.
So I think the jury is kind ofout about alpha-gal right now.
Okay, and then I have a notehere 70% of medications have
some form of mammal ingredientin it.
So if you get alpha-gal, thatlimits what you can take.
Speaker 1 (32:46):
This is crazy to me, but I'm not surprised.
I mean, there's so many crazythings out there and none of
them amaze me anymore.
Speaker 2 (32:53):
Yeah, I know, I know there's just yeah, and it's, and
it's.
It's just truly incredible howmuch this teeny, tiny little bug
messes up people's lives.
Speaker 1 (33:03):
Wow, too bad, I can't do something good.
Speaker 2 (33:07):
I know I know, Like, why can't it?
Speaker 1 (33:09):
like you know, make it so that sandwiches make me
lose weight, you know?
Or chocolate.
Or the cure to cancer, right, Iknow, yeah, yeah, that'd be
great Looking ahead.
What are you most excited about, personally or professionally?
Speaker 2 (33:27):
Well, professionally, I'm hoping that this, like I
said earlier, can become acareer.
I help bring awareness and makeit so people can protect
themselves, and it would begreat if one day nobody gets
Lyme disease again, again.
(33:53):
And there are so many thingsthat need fixing and I'm hoping
that I can bring some change sothat patients have better lives.
Now one of the things that Iwould love to be able to do is
influence maybe med schools ornursing schools to educate their
students, educate med students,educate nurses, so that when
(34:17):
someone comes into their officethey know what to look for.
If I had me and millions ofother people, if we had been
diagnosed early, we would havebeen fine.
Diagnosed early, we would havebeen fine.
Yeah, exactly.
Speaker 1 (34:32):
And if we were taken seriously instead of being
accused of doing drugs.
Now, this is a whole side note,but I had this epiphany take it
or leave it.
You need to become the Lemon orLime YouTube opera singer.
That's what it needs to be.
I'm picturing this whole, likethese video clips of you singing
(34:52):
opera, to teach people aboutLyme disease.
Speaker 2 (34:56):
Man, maybe I should start writing my tick-borne
disease opera.
Speaker 1 (35:01):
Yeah, I mean it could be some fun songs.
I mean, I don't know if you'reinto singing other kinds of
songs, but I'm just picturingthese.
These could be some really fun,different, because that's what
we need more of is a fun way ofeducating people.
I can make like a wrench, butwith Lyme disease.
Speaker 2 (35:18):
Yeah, instead of 525,600 minutes it could be
these six medications I have toeat all day.
Speaker 1 (35:29):
Yeah, I mean the opportunity that is there.
The idea is endless.
Speaker 2 (35:33):
Yes, yes, see, now you planted the seed.
I'm going to do it.
I will be the first one towatch.
Speaker 1 (35:40):
Yeah, you'll be in the front row.
Where can people connect withyou and follow along?
Speaker 2 (35:45):
So I am on YouTube Lemon or Lime, and I just
started on Instagram as well.
That's also Lemon or Lime andLime with a Y.
Speaker 1 (35:54):
Yes, that's very important.
Remember it has a Y.
Yes, it's not a lime you eat,it's L-Y-M-E.
Well, thank you for your timetoday and all this extremely
helpful education that you'vebrought to light.
I really hope that everythingthat you've had to share really
helps someone out there.
Speaker 2 (36:12):
Me too Me too, Thank you so much for having me.
It was really fun.
Speaker 1 (36:16):
It's been my pleasure .
I hope we stay in contact andhave you back sometime I would
be.
Speaker 2 (36:21):
Yes, I would be totally willing to come back.
Speaker 1 (36:24):
All right.
Well, thank you again andlisteners until next time.
Don't forget your spoon.
Welcome back to my Spoonie Sisters, and today oh,
I'm excited about this we arebringing Shira Haid back with
Lemon or Lime for part two.
Hello, Shira, Jen hi, Hi.
And Linnea, the co-host, isback as well.
We have so much great stuff totalk about, so I'm just going to
dive right in Now.
(00:20):
Recently, you launched Lemon orLime, which I love the name,
and when people get to see thevideo version of this, they get
to see your backdrop, which isamazing.
I love it.
It's so cute, it's so cute,thank you, Can you tell us what
inspired you to start this vlogand what has the response been
(00:42):
like since launching in January?
Speaker 2 (00:45):
Yeah.
So once I was finally diagnosedwhich took three years to get
diagnosed, I would you know.
Whenever I went to a doctor'soffice or my parents had to get
together, I would start tellingpeople like this is what I have
and this is what I'm beingtreated for.
And what I kept finding overand over again was that people
were really curious and they hada lot of questions and
(01:08):
generally everyone was prettyinterested in the topic.
So when I would be talking to anurse or I'd be talking to one
of my parents' friends orsomething, whenever the
conversation ended I always feltlike there was more.
I wish that I had more time totell them everything that I
thought they should know.
And I kept thinking if only Ihad like a website or something
(01:31):
that I could say here if youwant to learn more, go to my
website.
So Lemon or Lime started as awebsite and I was working on it
for two years and then finally,a friend of mine was like what
are you doing with a website?
Just put yourself up on YouTubeand you're done.
And I was like, yeah, thatwould be easier.
So that's how Lemon or Limeended up a YouTube thing.
(01:52):
I'm just launching theInstagram account.
Now there's been a lot of thatand I'm really glad because this
isn't just for people withtick-borne illnesses, this is
for everyone.
I've had a couple people say tome you know, I would love to
share your video, but I don'tknow anyone with Lyme disease.
(02:14):
I always say it's better tolearn some of these things
before you get sick and toprevent getting sick, because
understanding about ticks,understanding their habits,
where you can find them, thosesorts of things that will keep
you and your family safe fromgetting one of these awful
diseases.
So this, the channel andeverything is really for
(02:38):
everyone.
Speaker 3 (02:39):
You know I love that.
That.
It is for everybody, because somany of us chronic illness
people like to be out hiking andit's so important even for us
to be aware of the tick-bornediseases because it could make
our already current chronicillnesses worse.
So I love that you're gettingthat information out there.
Speaker 1 (02:59):
Yes, and I agree with that, because even if we don't
see the ticks, it doesn't meanthey're not there.
Oh my God.
Yeah, I mean, I grew up inIdaho.
I now live in Washington.
They're there.
Just because I have had theluck of not actually seeing one
doesn't mean they're not there,it doesn't mean I don't need to
put in precautions.
So that's something we all needto be educated on.
Speaker 3 (03:23):
Even in Arizona.
When we say we're in Arizona,you think desert, right, we are
campers, we are hunters, we arein the forest, there are ticks.
We are doing checks all thetime because it doesn't matter
Wherever they can breed, theywill breed, and Arizona included
.
People don't realize that.
Speaker 2 (03:44):
Yeah, I'm so glad you mentioned that.
I actually have a couple offriends in Arizona and one of
them always says to me you gotto come, you got to come, move
to Arizona.
There's no ticks here, butthere are.
Speaker 3 (03:56):
There are.
Maybe not in Phoenix, whereit's 150 degrees in the summer.
Right, there are ticks here inthe higher elevations.
It's not yeah I get annoyedwith people you might have to do
with thinking arizona is justdesert, because we actually have
different climates and so we dohave ticks, flagstaff, sedona
(04:18):
so yeah, what are?
What are your goals for lemonor lime and how do you hope it
will impact the chronic illnesscommunity?
Speaker 2 (04:27):
Really hope to be a place where people can go to get
answers, to get complexconcepts explained and broken
down, because there's a lot of,a lot of different topics within
the tick-borne disease umbrella.
You know, if I imagine how Iwas when I was first researching
(04:48):
all of this stuff, if youGoogle what is Lyme disease or
what is Babesia or what isEhrlichiosis, you're going to
get millions and millions ofanswers and it's going to be
difficult to weed out what isaccurate and what is not.
And there's a lot ofinformation that's out there
that even from agencies like theCDC and the NIH that are
(05:11):
outdated.
You know CDC is still sayingthat a tick needs to be attached
36 to 48 hours for you to getsick and that's not true.
That's not true at all.
It can be a couple hours.
Something like Powassan viruscan be transmitted in 15 minutes
(05:32):
.
So the fact that the CDC says,oh, it has to be attached for 36
to 48 hours, that's not true.
It really the clock startsticking once the tick attaches
and the tick can attach prettyquickly if it wants.
Let's say you are hiking orsomething.
(05:54):
A lot of times they say stay inthe middle of the trail, don't
rub up against the grass and thefoliage on the side, that's
true.
But even if you're in yourbackyard or your front yard
gardening, they can be there too.
One of the main vectors for or,I'm sorry, hosts for Lyme
(06:14):
disease and a lot of these otherillnesses are white-footed mice
, and mice tend to be around ourhouse because they're attracted
to garbage and food and thingslike that.
Even if you're not in a woodedarea and you're in a subdivision
or something, there can stillbe ticks in your yard.
I know it's creepy, it's supercreepy.
(06:38):
Even after all this time, ticksstill gross me out.
They do.
But we have intentionally leftour backyard kind of blank.
I would love a beautiful garden, but it's just.
I always think about my dog offleash and running about and she
may put her face in a bushtrying to find a ball or
(07:02):
something like that.
So we have left our backyardblank, just so that ticks don't
have a place to hang out andwait for either me or my dog to
brush by, because that's whatthey do.
They can wait, you know, andthey do this thing called
questing Like.
Think of a little kid who isputting their arms up asking to
(07:24):
be picked up like that Ticks dothat on the very tip of a blade
of grass, like that's all ittakes wood just to de-stress.
And I said to him I said youbetter watch it, because ticks
(07:50):
like to hang out in wood piles,it's good shelter for them, and
he kind of like, eh, whatever.
But these are things that areimportant to know so that you
can avoid these areas.
Speaker 1 (08:02):
Just by listening to you, I have now given myself
more and more permission to nolonger mow my yard.
There we go.
Yep, this has been my task forI don't know how many years.
Ever since Linnea met me, I'vealways been the one to mow the
lawn.
My husband sometimes works longhours.
I thought it was exercise.
He's now doing it.
I think I'm going to leave itthat way Because I've got enough
(08:25):
health concerns.
I think I'm going to leave itthat way Because you know I've
got enough health concerns.
I don't need to add to the list.
Speaker 2 (08:29):
Yeah Well you know what Cutting your lawn regularly
actually helps to keep yourproperty clear of ticks?
Speaker 1 (08:38):
Okay Well, we do one twice a week.
Speaker 2 (08:40):
So that's good to know, that's amazing.
Then that's amazing.
Then, like I don't know aboutyou, but my dog, she's always
rolling in the grass and stuff,but if the grass hasn't been
mowed in a while, you know,freak out Like don't roll, don't
roll.
Speaker 1 (08:54):
Well, and that's why we don't let our cats outside.
We have indoor cats, becausehe's just like you know what.
There are way too many thingsthese cats can get, you know.
Let's just keep them healthy.
They're staying inside thehouse.
Right, right, and it was enoughfor our dogs.
Speaker 3 (09:08):
We have right, yeah, because we, we, where we live,
is just rock so we have so webut we have pine trees still.
We still have to be careful ofthe trees and on the pines, even
though our backyard is safe, westill have pine trees in the
area.
Yep, yep, we have one pine treetoo.
Speaker 2 (09:27):
Yeah, yeah, the ticks will kind of grab onto just
about anything.
So, and when they are babyticks, which, if to give you a
frame of reference, it's likeone poppy seed or a half a poppy
seed, that's the size of them.
So you really, when you if youthink, oh, I'll see it, I'll see
(09:47):
it if it ever gets on me, youprobably won't.
And another thing that I reallyshould mention is a lot of
people have heard if you get bitby a tick you're going to get a
bullseye rash.
It's important for everyone torealize that only 20 to 30% of
(10:09):
people with Lyme get one ofthese rashes.
So that means 70 to 80% ofpeople never got one, never get
a rash.
And that's one of the reasonswhy it takes a while to diagnose
, because if the rash doesn'tshow up on somebody, you're kind
of guessing.
Speaker 1 (10:27):
Yeah, and my guess is that you never noticed anything
.
Speaker 2 (10:30):
There was never a rash for me, and that was both
times.
And, by the way, both timescats were involved and when it
comes to some diseases otherthan Lyme disease, there are
other blood sucking vectors likefleas or lice that can transmit
many of these diseases.
Speaker 1 (10:51):
I'm giving you the creeps.
I just hate bugs in general,and so the more we talk about
this, I'm just like, oh, this iswhy I hate them, I just do.
Speaker 2 (11:01):
I know, and if any of your listeners I'm over here
going yep, yep, I'm good, I know, and if any of your listeners
enjoy caviar, I would suggest tonot Google what tick eggs look
like.
If you like caviar, don't do it, because they look like caviar.
Speaker 1 (11:19):
Yeah, I'm so grossed out right now, yeah.
Speaker 3 (11:22):
I know I wasn't eating caviar anyways, I'm
really not eating caviar now.
Yeah, I know I wasn't eatingcaviar anyways, I'm really not
eating caviar now.
There's my real excuse fornever touching it.
Speaker 1 (11:30):
Well, I don't go out of my way for it, but there have
been events where they sprinkleit on on some kind of thing
that they're walking around with.
You know, they're walkingaround and they're giving you
all these things and you're like, oh, I'm one of those people,
all these things.
And you're like, oh, I'm one ofthose people.
I'm like I'll try everythingonce.
Speaker 2 (11:45):
I guess Not me, and now, I just ruined it for you.
Speaker 3 (11:47):
Close my eyes, it's not there, right, my husband
struggles to get me to trythings.
Speaker 2 (11:56):
That's going to be one of the things I will never
try, never try, yeah, yeah,right.
So a couple other things abouttics, though, because I think it
is important for everyone toknow a little bit about ticks,
because the more you know aboutthem, the better you can protect
yourself from them.
One thing that I think everyoneexperiences now is less harsh
winters.
Certainly, in the Midwest here,we haven't had winters kind of
(12:20):
like the ones that we had when Iwas a kid Like I remember it
being freezing for weeks andweeks and weeks on end, but it
doesn't do that anymore, and oneof the consequences of that is
that when the temperature goesabove freezing, ticks come out
and they're active again.
So they're still around.
(12:40):
They're still around fromprevious seasons.
Speaker 1 (12:44):
And now I'm thinking of all the people out there
hunting linea.
Speaker 3 (12:48):
Yep, sorry, okay so I will have.
I will tell you are.
We have a very certain way wedress when we hunt and how do
you?
Dress reasons.
Well, other than it being cameland really heavy, warm, my
overalls have elastic that goaround my boot so nothing can
(13:08):
come up into my pant leg.
Speaker 2 (13:11):
Okay.
Speaker 3 (13:11):
Okay, we wear layers of socks, then we have layers of
other stuff under, but our mainpants that go over all have
elastic where it goes around ourankles, around our boots,
because our boots come up overour ankles.
That way nothing can get up inthere.
(13:32):
It's like our sleeves areelastic around here and then
they velcro.
That's not only to keep ourgloves in our sleeves for warmth
, it also protects anything fromcrawling, because I sat in a
blind last year for my elk hunt.
So I'm sitting in woods coveredby wood and leaves and
(13:52):
everything, and I'm sitting onthe ground on a heated thing.
It heats up when you sit on it.
It's a hunting thing.
It's really cool.
I really should show it forchronic illness people because
it heats up as you're sitting onit.
So in the forest, that's what Isaid.
But there's still chances oftick, because there was a few
days of.
It was really nice, it was inthe 70s, guess what.
(14:14):
Everybody's out, everybody'sriding.
Those ticks are now really,really moving and they're on the
deer, they're on the elk.
So we're very careful.
I will tell you, none of ourelk have had ticks on them when
we Okay, I would recommend we'revery cautious, we spray, but I
(14:34):
don't think hunters and hikersunderstand the importance of how
they dress when they go do thatkind of stuff.
Speaker 2 (14:41):
Yes, I mean, I know that you're in camel, but is it
if you're in darker colorsyou're less likely to see
something if it does crawl onyou?
Speaker 3 (14:50):
and you know, even if you're you want to shake up, we
will shake off like okaynormally it's like 30 below.
It feels like up there, so it'scold.
This year it was warm, so wewere more cautious about the
bugs and the snakes and all thefun critters that come out when
it's warm.
So normally in hunting season,it's cold.
Speaker 1 (15:13):
And hopefully you're helping each other.
You know, checking each other,brushing each other off and
stuff.
Speaker 3 (15:18):
Yes, yeah.
Speaker 1 (15:19):
Yes.
Speaker 2 (15:20):
It's just important.
Yeah, definitely, tick checksfor other people, tick checking
your dog, if you have a huntingdog with you.
One thing that I like to useduring the summer last summer I
went to a couple concerts whereI was going to be outside with a
(15:41):
picnic blanket and all of theclothes that I plan on wearing
in something called permethrin,so it is a tick repellent.
So I treat all of the clothessocks, jeans, sweater,
everything in this permethrin.
And then I get there's this.
It's almost kind of like alotion called Picardin and
(16:04):
that's safe to put on your skin.
So those are things that I useand those are specific to ticks
of actual tick repellents.
Yeah, absolutely, absolutely.
And I also recommend youabsolutely you can drench it.
Yes, it is unscented and itdoes last for more than one wear
(16:27):
.
So if you, if you do yourhunting gear, you know, soak it
in permethrin, it'll be good foryou know a few uses, it'll be
safe for that.
Like, yeah, and like you, yeah,and like you said, long shirt,
pants, closed toed shoes,tucking your sock, your pants
into your socks, socks, thoseare all.
Speaker 1 (16:48):
Those are all good preventative measures that you
can take now you're starting toconnect with more groups as your
health has been improving.
How has that sense of communityhelped you in your journey?
Speaker 2 (16:59):
it has helped a great deal.
At first, again, when you're inthat deep dark place, you think
I don't need anybody I'm fineof.
When you're in that deep, darkplace, you think I don't need
anybody, I'm fine, of course,you're anything but fine.
So the community that I foundis online, because a lot of
people with tick-borne diseasesare homebound or bedbound, so
we're really not out and about.
(17:21):
On top of that, the fact thatthere aren't really a lot of
in-person support groups thatare easily accessible, like
something like breast cancer orParkinson's things that you may
be able to find in yourcommunity.
The online community is where Ihave found people.
The one that I frequent themost is, of all places, on
(17:45):
Reddit.
I've kind of become a Reddithead since then and if you're
not familiar with Reddit, redditis literally anything that you
can think of, whether it's youlike funny cat videos or you
like politics, or I love theshow Friends, so I'm on a
Friends subreddit.
There is a subreddit foreveryone, and so I found people
(18:07):
with Lyme disease and othertick-borne diseases and it's
really nice.
I think.
For the most part, everyone ispretty supportive and helpful.
Of course, there's going to bea bad apple here and there, like
every community, every onlinecommunity, but people, you know
people go on there and they vent.
(18:27):
People say you know I don'twant to be here anymore, or this
is too hard, or you know I haveto ingest a disgusting drink.
How do you guys do it?
You know asking for advice, andso it's.
It's really nice to be able totalk to other people who are
going through the same thing asyou.
Speaker 1 (18:47):
I could not agree more.
And that's actually how thepodcast started.
We started out as a communityand then, next thing you know,
it's a podcast and it's a blogand now we're on YouTube.
I mean, that's just how itgrows, because there's a need
out there and we need to fill itand people need that support To
go with that.
We don't always want a placewhere it's only complaining
Sometimes.
We want a place where, yeah, wecan vent about things, but we
(19:11):
want to hear tips, tricks,support and guidance, and to me
that sounds like what you'redoing and that's great.
Speaker 2 (19:19):
I'm definitely going to be trying to cover a lot of
the nitty-gritty stuff, like youknow, what is Lyme at a
microscopic level, or what isgood prevention, like we were
just talking about but alsotalking about mental health,
which I think gets pushed downto the bottom of the priority
list when it comes to tick-bornediseases, you know, because
(19:39):
we're dealing with all of thisphysical stuff that a lot of
people don't understand, somental health does kind of get a
backseat in the conversation,but all of it is so important
because all of it makes up ourhealing journey?
Speaker 1 (19:52):
Absolutely, and it all blends together.
We need to take care of everyaspect of ourselves, not just
one or the other.
Yes, now, do you prefer to seeLemon or Lime becoming a
profession or keep it more aslike a passion project?
Speaker 2 (20:07):
I mean it would be nice to have it become a
profession and earn a livingdoing this, because I don't.
I'm on disability.
I've been on disability forseveral years, so that's the
only income I have, and so itwould be nice for this to turn
into something bigger and to bethe place to go to get
(20:28):
information and to connect withother communities.
Like you guys.
That's what I'm hoping for, butright now it is a passion
project and so I'm fine withthat.
Speaker 1 (20:39):
Absolutely.
I think passion projects areneeded.
I don't know about you, but Ican tell that you glow and your
excitement when you're talkingabout it, and I always worry
once we move out of it being apassion and to more of a job,
are we going to lose that sameexcitement and vibrancy that we
have?
Speaker 2 (21:00):
Yeah, I did think about that and I even told when
I did launch, I did tell mytreating practitioner that you
know, oh, my YouTube channel isup.
And she was like, can I behonest with you about something?
And I said, of course.
And she said I'm worried thatby doing this vlog, by doing
(21:22):
this channel and having this youknow brand or whatever, that
it's going to become youridentity.
And she said, and I don't wantthis to be your whole life.
So I said to her I hear whatyou're saying and I understand
where you're coming from, butthe way that I see it is, I'm
helping people, I'm being what Ineeded when I first got sick
(21:45):
and there is a need for someoneto be out there explaining these
things and someone who's beenthere and is still there.
But I did tell her.
I said I promise you, if itdoes become too much I'll let it
go, but the way that it isright now, there are so many
things to cover.
I mean, I have endless lists ofthese are all the things that I
(22:08):
want to do on Instagram andthese are all the things I want
to do on YouTube.
It's like I made sure the yearsbefore I actually launched that
there was going to be enoughfor you know to talk about,
because I wasn't sure Like whatif I you know I've run out of
things to talk about Turns outit's endless the amount of
things, because there's alsocontinuing research and things
(22:29):
like that, so there's alwaysnews, absolutely I agree, and,
like you said, it'sever-changing.
Speaker 1 (22:35):
There's more information coming out, and
sometimes it's okay to evenbring back the same material and
bring it up again, becausesometimes we need to drill it in
our own brains and in others,and so they might need to see it
in the same material inmultiple ways.
If that makes sense, yes, oh no, it totally does.
Now.
What does a successful day looklike for you in the now?
Speaker 2 (22:56):
So I still deal with more bad days than good, like
the way that I look right nowprobably don't look sick.
Whatever sick is A lot ofpeople you guys get this.
Oh, you don't look sick all thetime, right, all the time so,
especially when I have my makeupon.
I got my contacts in, I got myhair done, but it is still a
(23:18):
struggle.
I haven't really found a goodschedule yet where I'm able to
work every single day.
I actually got off of severalweeks it was about a month.
All of March was a flare-up, soI couldn't get anything done and
a good day for me is filming orresearching or writing.
(23:40):
I've also been trying tocomplete.
There are these two conferencesOne is a Lyme and Associated
Disease Summit and another oneis a conference just about
alpha-gal syndrome, which is akind of a meat allergy that's
emerging.
That's one of the co-infectionsthat is gaining a lot of
traction lately because it'sspreading, so I wanted to learn
(24:02):
more about that.
There's always something to do,but I'm still at a place,
health wise, where I'm just notable to work every day, so I
just work when I can that right?
Speaker 1 (24:14):
there is a great segue, because now what I want
to ask you is what's one thingyou wish people understood about
living with tick-borneillnesses and chronic conditions
in general, and I want to bringup co-infections, yes, things
that I wish people understoodwas that these diseases are
serious.
Speaker 2 (24:33):
This is not like a cold, this is not the flu.
These are life-alteringdiseases.
These diseases handicap people,make them disabled.
I couldn't speak, I couldn'twalk, I couldn't walk.
I still have trouble being onmy feet for more than 10 minutes
, and that's in contrast to theway I used to be, which was I
(24:58):
was on my feet all day as aclinical massage therapist, all
day and I never thought anythingof it.
And it's not until you lose theability to do something that
you start to realize how muchyou miss it.
But these diseases are serious.
Tics are everywhere.
I mean, unless you're on avacation in Antarctica, there's
going to be tics near you, youknow.
(25:19):
And there's people who gooverseas thinking, oh, there's
no tics here, it's just inConnecticut.
They're over there too.
And I don't tell people this toscare them.
I tell people this to informthem that all of these ticks
carry different diseases.
And when you look at a tick,you can't tell what it has, and
it's not until it starts feedingthat it starts to inject the
(25:44):
contents of its belly into you.
So I kind of call it tickroulette, because you never know
what the tick has.
It's kind of a gamblingsituation.
And another thing I mentionedearlier is a rash doesn't happen
to everybody.
Not everybody gets that classicbullseye rash and a lot of
(26:04):
people don't get a rash at all.
Some people also sometimes geta rash and it looks like
something else, like hives or anallergic reaction, kind of
spotty.
So if you go to a doctor,they'll say, oh, that's not Lyme
, because that's not an erythemamigrans rash, that's not a
bullseye rash, so you must havesomething else.
What I also wish that I knewearlier was that the average
(26:28):
doctor doesn't really knowanything about tick-borne
diseases.
I wish they did, and that isone thing that needs to change
and I hope I can change it bybringing it to everyone's
attention over and over.
Yes, yes, co-infections are abig part of what makes people
with tick-borne diseases or Lymedisease have persistent and
(26:50):
chronic symptoms.
It's a big part of the picturethat is very misunderstood.
And co-infections are two ormore pathogens in one patient.
That's what a co-infection is.
And so, let's say, you get Lymedisease from a tick.
You also, like me maybe,started playing with feral cats
(27:12):
just because they're cute, youknow, and you don't notice any
ticks.
You don't notice any fleas orlice, you know, because all of
those bugs are very, very tiny.
Or you pick up the cats and Iliterally have a picture of my
2014 infection and of course, Ididn't know at the time, but I
(27:32):
have pictures with the cats.
I was visiting a barn and thesetwo cats were following me
around and I'm an animal lover.
So towards the end of my littletour of this barn, I knelt down
and started petting the catsthat had been following me and
weaving in and out of my legs,and I picked one up.
(27:54):
I don't know how many weeks ora few months later that I
started getting symptoms, butthat's all it takes and it's
really crazy that you know, Igot three things.
I got what's called the threeBs Borrelia burgdorferi, which
is the Lyme disease, bartonellaand Babesia.
Babesia is considered a parasite.
(28:15):
Some of these co-infectionsdon't just come from ticks Ticks
.
Usually, the Lyme disease ispretty much always going to come
from the ticks.
That we know because,apparently, ticks' bodies are
better equipped just the waythat they're structured.
They're better equipped attransmitting Lyme disease as
(28:38):
opposed to like a mosquitoMosquitoes, for instance, have
been found to have Lyme diseasein them but because of their
body structure and the way thatthey suck blood, as opposed to
ticks.
They're not transmitting theLyme disease like the ticks do,
but something like Babesia, or,yeah, babesia, for instance.
(29:00):
This is a big co-infection and abig issue.
That isn't just from ticks.
People are getting Babesia fromblood transfusions.
They're getting Babesia fromorgan transplants.
So it's not just ticks.
Even mother to baby congenitaltransmission is happening with
Babesia.
Now the government knows theyare aware that blood is in their
(29:25):
blood banks and some of it hasBabesia, some of this blood.
So imagine for a second you aresick, you are on a transplant
list.
You finally, finally get thecall that you have an organ
waiting for you.
You get the organ transplantand then you start to get sick.
Imagine that.
(29:45):
I mean how awful, is that?
Speaker 1 (29:47):
Yeah.
And then I'm over here thinking, weighing the cost right Is it
worth getting this organ or thisblood because it's going to
help X, Y and Z?
Is it worth the risk of gettingthis and then trying to heal
from it?
Yeah, yeah.
Speaker 2 (30:06):
I mean, you know, and a lot of these blood
transfusions and these organtransplantations, these are
life-saving procedures that arehappening, right, and I think
that it's different by state.
Some states are more vigilantwith their testing of the blood
in their bank or the organs thatare, you know, waiting to be
(30:26):
transplanted or whatever, butit's in the literature and they
know that people are gettingBabesia this way.
Yeah, and most people are notaware of this.
Speaker 1 (30:36):
Okay, you had mentioned earlier about meat.
Is that one of the ones that isfound in meat too, or is it
another one?
Speaker 2 (30:41):
So the meat.
One is called alpha-galsyndrome.
Alpha-gal is you may have heardof a red meat allergy, but it's
not technically just red meat,it's mammalian meat and
mammalian products.
So when people get, it'softentimes the Lone Star tick
that does it.
(31:01):
There are many, many differentspecies of ticks.
There's over 900 species ofhard and soft ticks.
They come in two categorieshard and soft 900 species and
there's about 100 species ofticks in the United States.
So the lone star is the onethat they're finding is
(31:24):
prominently transmitting thisalpha-gal syndrome, transmitting
this alpha-gal syndrome.
So what happens is they developalmost like an allergy, but it
doesn't behave exactly like anallergy, like if you're allergic
to nuts, for instance.
The reaction comes almostimmediately right.
That's usually what a foodallergy is.
(31:45):
Alpha-gal.
On the other hand, it can takehours for the reaction to happen
and people are gettinganaphylaxis.
People are dying because theysuddenly get this allergy and
maybe they're not aware of whatit is.
So it's not just red meat, it'smammalian meat and also
(32:07):
mammalian products.
So collagen or gelatin thinkabout how many medications and
supplements have gelatin in thecapsule.
People who get alpha-galsyndrome cannot ingest those
things anymore.
Some people are saying thatit's curable.
(32:27):
Some people are saying they'renot sure.
So I think the jury is kind ofout about alpha-gal right now.
Okay, and then I have a notehere 70% of medications have
some form of mammal ingredientin it.
So if you get alpha-gal, thatlimits what you can take.
Speaker 1 (32:46):
This is crazy to me, but I'm not surprised.
I mean, there's so many crazythings out there and none of
them amaze me anymore.
Speaker 2 (32:53):
Yeah, I know, I know there's just yeah, and it's, and
it's.
It's just truly incredible howmuch this teeny, tiny little bug
messes up people's lives.
Speaker 1 (33:03):
Wow, too bad, I can't do something good.
Speaker 2 (33:07):
I know I know, Like, why can't it?
Speaker 1 (33:09):
like you know, make it so that sandwiches make me
lose weight, you know?
Or chocolate.
Or the cure to cancer, right, Iknow, yeah, yeah, that'd be
great Looking ahead.
What are you most excited about, personally or professionally?
Speaker 2 (33:27):
Well, professionally, I'm hoping that this, like I
said earlier, can become acareer.
I help bring awareness and makeit so people can protect
themselves, and it would begreat if one day nobody gets
Lyme disease again, again.
(33:53):
And there are so many thingsthat need fixing and I'm hoping
that I can bring some change sothat patients have better lives.
Now one of the things that Iwould love to be able to do is
influence maybe med schools ornursing schools to educate their
students, educate med students,educate nurses, so that when
(34:17):
someone comes into their officethey know what to look for.
If I had me and millions ofother people, if we had been
diagnosed early, we would havebeen fine.
Diagnosed early, we would havebeen fine.
Yeah, exactly.
Speaker 1 (34:32):
And if we were taken seriously instead of being
accused of doing drugs.
Now, this is a whole side note,but I had this epiphany take it
or leave it.
You need to become the Lemon orLime YouTube opera singer.
That's what it needs to be.
I'm picturing this whole, likethese video clips of you singing
(34:52):
opera, to teach people aboutLyme disease.
Speaker 2 (34:56):
Man, maybe I should start writing my tick-borne
disease opera.
Speaker 1 (35:01):
Yeah, I mean it could be some fun songs.
I mean, I don't know if you'reinto singing other kinds of
songs, but I'm just picturingthese.
These could be some really fun,different, because that's what
we need more of is a fun way ofeducating people.
I can make like a wrench, butwith Lyme disease.
Speaker 2 (35:18):
Yeah, instead of 525,600 minutes it could be
these six medications I have toeat all day.
Speaker 1 (35:29):
Yeah, I mean the opportunity that is there.
The idea is endless.
Speaker 2 (35:33):
Yes, yes, see, now you planted the seed.
I'm going to do it.
I will be the first one towatch.
Speaker 1 (35:40):
Yeah, you'll be in the front row.
Where can people connect withyou and follow along?
Speaker 2 (35:45):
So I am on YouTube Lemon or Lime, and I just
started on Instagram as well.
That's also Lemon or Lime andLime with a Y.
Speaker 1 (35:54):
Yes, that's very important.
Remember it has a Y.
Yes, it's not a lime you eat,it's L-Y-M-E.
Well, thank you for your timetoday and all this extremely
helpful education that you'vebrought to light.
I really hope that everythingthat you've had to share really
helps someone out there.
Speaker 2 (36:12):
Me too Me too, Thank you so much for having me.
It was really fun.
Speaker 1 (36:16):
It's been my pleasure .
I hope we stay in contact andhave you back sometime I would
be.
Speaker 2 (36:21):
Yes, I would be totally willing to come back.
Speaker 1 (36:24):
All right.
Well, thank you again andlisteners until next time.
Don't forget your spoon.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy And Charlamagne Tha God!
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.