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Kiki overcomes POTS, ME/CFS and Chronic Lyme after 10 years

I was 15 years old I was just started
high school and I had been totally healthy and very active up until right
now I was just one day I just couldn’t you know get out of bed I couldn’t make
it to school anymore they just think oh you’re just faking it for the attention
my hands and my feet were freezing cold all the time like I always had the
nausea really trouble eating food at all bright lights sometimes I just have to
wear sunglasses I really had the desire and you know just get out of the house
and do anything you know you can just go into the grocery store like that was a
big event for me you know most the time I just spent I was homebound and you
know I didn’t I didn’t have any friends anymore it was really lonely when I
first got diagnosed with pox I told me out that better three to five years and
then after five it was like I still wasn’t any better at all I was worse so
that was you know really helpless I felt like I just had like a feeling I can’t
describe it like it was just like a feeling in my soul like that I was gonna
get better um it was kind of like an exciting and like scary hopeful feeling
I just felt like wow like I just feel like I had no idea why I felt that way I
just you know felt that it was like a sign from God like oh it’s gonna get
better somehow I didn’t know like happen you know Society it really shows us like
you know you are what you do and and what your accomplishments are and your
achievements but you know I felt like I was useless because I couldn’t do I
couldn’t contribute to society I just I felt like it you know I was like useless
and but then through that I just realize no like I man I’m valuable I’m worthy
just because I’m a person you know I mean that’s that way that’s what
determines your worthiness of the person is just who you are and not what you do hi Kiki it’s lovely to connect with
you how are things fantastic well we managed to connect to
the wonders of the internet I think it was through Instagram where you have a
large following and I want to thank you for coming to share your your story
today about your recovery look I guess the place often start with with people
is some you know when did things first go wrong how long ago was it and and how
did you first know that something wasn’t quite right
well I was 15 years old I was just started high school and this was back in
2006 and I had been totally healthy and very active up until right now I was
just one day I just couldn’t you know get out of bed I was very I felt very
lightheaded and very nauseous and I just I couldn’t make it to school anymore
well and and what happened what happened when you presumably you went to the
doctor and what did there say well at first it took them about a month to
really realize what was going on and it was my heart rate was beating too
quickly when I stood up and my blood pressure was too low so like all my
blood just kind of drained and cooled in my feet and I just felt faint a lot
right the day fund the cause did they give you a treat initially they they
diagnosed me with Nero cardiogenic instability and I they did that through
the tilt table test what but about a year later than they did the tilt table
test again and that’s when they diagnosed me with pots Brian that kind
of been a good year for a fifteen-year-old yeah what was that like
um well I I missed quite a lot of school most of the time I was like homebound
with a tutor and so I kind of did my classes remotely and what was it like it
what what did everyone say to you I mean that people believe you that do well did
you ever have any different you know they just think oh you’re just faking it
for the attention yeah you know crazy isn’t it so what happened from there on
did the symptoms grow or change well I still had the lightheadedness and
Nadja and you know through the years I they got worse and I got more symptoms
like the chronic fatigue that was really bad and I also had really bad anxiety
mm-hmm so um and did I mean must have been strange to get all these additional
symptoms I mean what do you think was driving the anxiety had you had anxiety
before you got ill no no so do you think it was a symptom or do you think it was
because you were having it because it’s so difficult being ill I think it was it
was just another symptom it felt like you know I I wasn’t worrying about a
particular thing you know I just I just felt like my brain it was like you know
like screaming in my brain like trying to like claw itself out and like I had
no idea why have any thoughts yeah no absolutely what happened leading up to
the first time we started hips I mean was there like a day where you suddenly
went just doesn’t feel right or how did that come on was like overnight or was
it gradual no it was you know one day I was totally fine the next day I just I
just can’t set up how confusing is that yeah you must have been going in what’s
going on and and so what happened did anything happen leading up to the
illness like if you think about the 12 to 18 months did you have any major
events or did you have any sort of physical things or medicines or anything
that led up to this I just came out of the blue it was totally suddenly out of
the blue right right and then um okay so then 12th man seen you go
diagnosis of pots and then after that you start to get chronic fatigue
syndrome chronic fatigue symptoms did you get a diagnosis of chronic fatigue
syndrome as well or did they just keep the diagnosis of pots they kept the
diagnosis of pots the chronic fatigue o is just you know I felt like I think
it’s long six months and it’s considered chronic fatigue okay and and then tell
me how your symptoms change this time progressed after that you got the
fatigue did you start to get other strange symptoms at all
sensitivities so anything like that um well one thing I noticed that my hands
and my feet were freezing cold all the time I remember it I would
we had like this metal table in the backyard you know the Sun heated it up
really you know really hot so I just put my hand on there just to warm them up
and not only my stoop my hands would still be warm you know five minutes
later you know be cold again I just cannot figure out why my hands of you
are so cold yeah yeah yeah no it’s a strange that the symptoms we we can
experience what about them to give any trouble smooth you’ve got yes well what
was going on there um I like I always had the nausea and there’s a point where
I had a really trouble eating food at all um one thing that helped was the
Paleo diet I’m just eliminating all through that
could cause inflammation right in my gut so that okay and did you did you find
you were like having sort of was it like IBS was it like constipation or diarrhea
or mix of both or just fell there’s nothing like I I mean I they did all
sorts of tests like the gastric emptying has yeah and asking you know
everything’s chole normal yeah yeah sure didn’t feel normal hey and what were
your parents saying through all this must have been yeah they you know they made sure like I
got tell my doctor appts you know they would drive me because you know I I was
not able to drive for a very long time so yeah yeah yeah they such a huge
support to me just you know I just think them so much just for driving me to each
doctor appointment and just you know really making sure that you know I was
getting the right treatments people often forget how important these things
are I mean when you’re chronically ill you know even this even even if there is
help you can’t necessarily take advantage of it unless you’ve got
somebody to help you do that so yeah that’s that’s a big thing so um
what about did you have any sort of sensitivities like to light or to sound
or smells that kind of thing happen um I had a little bit of light sensitivity um
I didn’t like like a bright light sometimes I just have to wear sunglasses
there was like bright lights I really questioned light yeah yeah and we see a
fatigue did you did you find that it was always there or did you find a change I
mean what did it feel like to have that fatigue
I was interesting because I I went you know five years without experiencing
fatigue mhm and then I got it like suddenly yeah okay so five years he had
the pots and then the fatigue suddenly came in and and when it came in was it
like there all the time or was it did you find that when he did something they
got worse or did it get worse straight away what was it like um it was pretty
constant pretty constant okay what would happen if you exercised or anything like
a way still able to exercise and do anything almost the pots too bad well
before I got the crank back to you I could exercise and I really loved
exercising I thought like that helped a lot more strength in my heart but after
I got the chronic fatigue I just wasn’t able to exercise me right right
so what was life like I mean what’s life like what are you doing with yourself
you you in their five years ill you you’re 20 years old
tell me what how do you spend your day is it was it was really boring yeah like
you know I I really had the desire to you know just get out of the house and
do anything you know you can just going to the grocery store like that was a big
event for me um so you know most the time I despair I was homebound and you
know I didn’t I didn’t have any friends anymore you know they all you know
graduated high school went off to college and yeah yeah I was it was
really lonely yeah did you did you graduate at all
from high school I did graduate from high school just through that study
right and so how would you spend your days um just I must say just you know go
on the internet on YouTube watch movie and um what do you think was your lobe
pointed with the illness um it’s probably great when I got the chronic
fatigue so like at that point like I just they when I first got diagnosed
with pox they told me I would get better in three to five years right and then
after five it was like I still wasn’t any better at all I was worse so that
was really hopeless I felt like what what treatments had to try doing this
time I’m doing that time well I had gone on Pluto cortisone which is the putz
treatment and a lot of different medications beta-blockers I can’t
remember all them but they all made me worse I had like terrible side effects
from it I had really bad headaches like the worst pain ever and my headache and
I would throw up because of it and I’d go off medication and I’d be better
um so for I might’ve thought I don’t want to take any medications like I’m
I’m just done with that so in the meantime one of the treatments like I
had neck pain so I started going to a chiropractor
doctor and he noticed that my jaw was a little like misalliance
so they thought maybe there’s some compression going on that’s causing the
pot so I did a orthodontic treatment um where they kind of fix the alignment of
the jaw I was just just doing that and you know I didn’t really know what else
I could be doing yeah do you have problems like with immunity like did you
find that you were getting flus or cold kind of symptoms often old were you
getting like swollen glands so anything of that nature as well no not too much
like I I mostly stayed you know inside most the time and sometimes when I did
go out I would wear like the medical mask I know if I dig it go take me like
a month to recover right okay so even from a bicycle little cold sort of thing
it would really work yeah what would the doctor saying when you were responding
so badly to due to the medication did they give you any sort of insight or
suggestions yeah okay it’s just no no no cure no kaze yes and then I mean
goodness that’s pretty tough to deal with emotionally isn’t it I mean it’s
one thing good elbows another thing to be in this limbo where nobody knows
what’s going on how do you um did you think at that stage that it was did you
still think you would recover or had you started to wonder whether you would stay
sick I’m at that point I was just taking it one day at a time like I wasn’t even
thinking about the future um I hope I was gonna get better or not um but I was
kind of prepared to live the rest of my life like yes yeah that’s probably a
good way to handle it it you know you don’t overthink it too you going through
that so then what happened I mean how did you go from this obviously we going
for years now I mean after the chronic fatigue syndrome said sit in so that was
five years in how long after that was it that you had your turning point would
you say I I’d say about a year after I got I
always had the chronic fatigue I just had like I just had like a feel I can’t
describe it like it was just like a feeling in my soul like that I was gonna
get better um it was kind of like an exciting and
like scary hopeful feeling I just felt like wow like I just feel like I had no
idea why I felt that way I just you know felt it was like a sign from God like I
was gonna get better or something I didn’t know like how it must have been a
little yeah it’s bittersweet isn’t it it’s kind of scary it to get their hopes
up isn’t it yeah I do be in a spiritual person all along all your life I think
like you know all that time just being alone I had a lot of time to just
reflect on you know my own self and I felt like I did grow very spiritually
here the whole yeah yeah tell me more about that how do you how did the
illness help you to do that um the DLLs helped me to do that or was
it just happening at the same time I just felt like I did grow up in my
Christian Church and so I did believe in God and then you know it’s I just felt
you know so hopeless during that time but I just felt you know yo God is still
good even though I feel sick so and I just kind of grew and and so you had
this this feeling I mean let me ask you just before we get to that I mean how
did you feel about your illness and the symptoms I mean they’re with you all the
time if bit like a bully isn’t it you know
always in your face and you mentioned the anxiety although you described it
really is a symptom which I totally understand by the way we totally get
where you’re coming from but I mean there’s also an element of
you know I mean it’s it’s pretty tough emotionally isn’t it when you have these
symptoms all the time um did you find that you had like a strong emotional
reactions when your symptoms got worse did it
set EULA um no I was so used to it that way there’s like every school much
numbed out to it yeah okay so you start to get this feeling this insight that
you’re going to recover and and then what happens um so then like all of a
sudden I just happen to find hots treatment center down in on Texas and so
my my brother just happened to be going out to college there and we were driving
out there anyway so was a cool why not just try it out and they did biofeedback
there oh very good uh yeah so it kind of helped me like learn how to control my
breathing and like with that control my heart rate um and then through that like
it warmed up my hands like it was able to like I don’t know somehow you know
breathing and like pumping the blood through my body like my hands and my
feet warmed up and like that gave me so much hope because I know why my hands
were cold in the first place and I learned it was just you know just not
breathing properly it’s very powerful when you do something and something
changes isn’t it it’s like oh this isn’t just a bunch of lot gold whatever
something that will come and go it’s like I effect AddThis you know so um so
tell me about this biofeedback and what did they what did that involve what what
did you specifically do mm-hmm so they had heart rate monitor it was attached
to me your lobe and then they had a little temperature that was attached to
my finger to monitor my you know the temperature of my fingers and then it
was just a screen where you know just goes up and down you just kind of you
know breathes with it you know the waves go up and down and then it controls your
heart rate variability so like when you breathe in your heart rate goes a little
faster and when you breathe out your heart rate goes a little slower and
somehow that just you know allows the body to pump the blood you know where
it’s supposed to go and you know warm up my hand so were you trying to see
you’re breathing with the screen is that what you were doing yes
okay so it was looking at your natural heart rate variability and then you were
sinking your breathing with them testing and then as you were doing that did you
feel anything whilst you were doing did you feel it the first day did you feel
it after week what what was that like it was pretty pretty quick that I noticed a
train okay and what was the first thing you noticed your hands warming up yeah
and and then what else happened with your symptoms what else did you notice
um that was pretty much the only sometimes that that you know helped um
and then I would also can I try to you know stand up and do it as well because
you know that when I stood up my hurry got so fast so you know I tried even
after I left the treatment center you know I I downloaded like there’s an app
you know you can download so I would like do that and just practice every
single day right okay just on your phone and what kind of
a sense of what do you use um and then you play that okay fantastic and then
now we support let’s just talk a little bit about that what your symptoms of
supports you we need stand up you’d get like tachycardia right you’d get like a
racing heart you can tell me I’m what did I feel like I mean to someone who
hasn’t had it how would you describe it um I just felt like I had it lay down I actually never fainted as you know I
just can’t tell like um if like my vision would start to like black ah my
hearing would get fuzzy is just all that blood was like draining from my head so
I just like I need a lay down right now for also yeah and your heart was what
was it like did you feel like it was gonna jump out of your chest or was it
just racing or dude how did the feeling yeah I would say it was just racing like
I didn’t think it was a like I know some people you know they get over 200 you
know beats per minute like I don’t think my nose MMS you just felt it racing okay
yes so okay and now you also had a subsisted
plots and in the chronic fatigue you also had a diagnosis of Lyme is that
correct yes when did that come was that before the chronic fatigue syndrome or
after that was after so after I did the biofeedback therapy it was maybe about a
year later I was part of the Potts Facebook groups and it was just a woman
on there she just it was recommend that everyone with pots get a line test
because she had pots for a long time and she was diagnosed with Lyme and all
these other people on the scooper the same thing was happening so I went to my
it was my show my pediatrician because you know I was under 18 when I got sick
and she knew my whole you know story with the pots and I asked her for a line
test and she just was like what like no and you don’t have line like this is
nothing like she just thought it had nothing to do with each other but she
you know took got a line test for me anyway it was the Western blot test and
it came back positive and she was just shocked and socially I’m getting all my
pots patients this test yeah yeah interesting and so um so this is like a
year after you had to test that what in that year did you continue to have the
biofeedback or did you just do it at home I just did and how did your
symptoms improve um it was mostly just you know the blood
pumping and the circulation issues so you still had the fatigue yes okay you
said the fatigue and would you still get the pot symptoms like the booze enos
when you stood up okay so it was better but it wasn’t gone yeah but at least it
was a step in the right direction Hey and so you must have been grateful did
you consider getting more biofeedback to try and get better results ah no just
figured that’s that was as far as it would take you yeah so then okay so then
she the Lyme she died you diagnosed with Lyme um how much better do you think it
word this stage compared to like when you when you went to the biofeedback
like I mean let’s say you before you did the five feedback I mean what percentage
recovered were you then and what percentage recovered were you like a
year later so before I did the biofeedback like I was on a percent say
yeah and maybe you know after the biofeedback maybe ten percent better not
not that I know at the time that’s like a huge deal yeah
it just gives you hope doesn’t it oh yeah I mean that’s really a huge part of
the journey is having some kind of hope that things can get better had you heard
of other people who recovered how’d you come across like positive stories or
anything like that no I don’t so that makes it pretty tough doesn’t and so uh
yeah no wonder you’re like me motivated to share these guys okay so then doctor
diagnoses you be slime you must be what seven years in there is that about right yeah so what happens next how do you
progress from here mm-hmm well you know protocol for Lyme disease is you were
put on antibiotics for 30 days and then and I’m not
you know I they sent me to the infectious disease specialist and you
know I was asking like is this related to pots and he said no I’m like well
after 30 days of antibiotics like I’ll be better like yeah so I have to take it
now they’re your line test to see if it’s ganja like no you’ll just be better
and of course after 30 days you know I was I felt even worse
um and so I went to a different infectious disease specialist and he was
you know Lyme literate and he put me on antibiotics he continued it for about
seven months and I still was not better I was just getting worse and worse and
um you know eventually my insurance wouldn’t pay for it anymore they said
being on antibiotics that long is like really dangerous so I just went off of
it I knew I didn’t I didn’t really know what to do after so when it got worse
wasn’t what good worse specifically all my symptoms
you know the critique was probably the worst you know my digestive system got
worse and and yeah I mean the fatigue will you do you I mean what was life
like at this day so you pretty much housebound or yeah I was um I was going
to the Community College I was taking one class like a semester and you know
it wore me out a bit I was you know I was just really determined just to go to
one class you woman there are some my classes you want to do something no you
yeah you know till you get done and I don’t think people realize just a tough
slog that is that one class is probably where you like doing like three degrees
at once you know okay so then so then what happens I mean this is no it’s
something like a great story I mean something a great story but it
doesn’t sound very positive yet but how do you turn it around what happens well
the infectious disease specialist that I was seeing he was doing a lot of
research with pots and Lyme disease and he found that like in a lot of these
patients they had blockage in the jugular veins and you know
to you and you know pressed on those veins you would feel think because you
know you’re not getting that blood flow and so they did an ultrasound on my
jugular veins they found like there’s like a valve there and it just wasn’t
working my blood was like flowing backwards and they said like the lime
had to like accumulated there so the way to like you know get rid of that was to
do this surgery um so it was called like a jugular vein a plasti where they would
go in there with a balloon and just can’t open those veins back up and that
was like minimally invasive they went they went through a vein in my leg you
know what’s through my heart and they just kind of opened those veins up there
and while they were doing the surgery they were checking other veins to see if
they were compressed and they were but they couldn’t do anything about it
because as you know being compressed by my spine or you know just bone so they
you know can’t do the balloon there so after that they recommended that I go to
this is like special chiropractic technique or they you know just it’s not
like you know they didn’t like crack my neck or anything there’s kind of pressed
in different spaces and after a while like that really helped me like I got
her rid of my neck pain and like I was able to you know sit up better and you
know my my symptoms got a little better what about the surgery did the surgery
have any impact I think sign it’s it’s so hard to tell them I’m like you know
it did feel like you know it’s so gradual so it wasn’t obvious like that
surgery that you felt better try to wear okay so after surgery is pretty much the
same is that what you’re saying initially and then and then you start
doing this chiropractic work and then then in fact made it just a little bit
better or a lot better yeah I was probably about 50% better by that Wow
okay so how long did you do that chiropractic
years okay and so did you do anything else during this time um around that
time that was so so when I tried the Paleo diet so that okay so you went on a
paleo diet and did this chiropractic treatments and can you describe these
contracted treatments you’re saying they weren’t they were just like like a like
massaging or there were more gentle than the neck cracking yeah they just kind of
like um it’s called Nuka carpet and you see CA and I’ll be this I don’t know how
they do they just say press on certain areas they you know measure you know the
length of your legs and like where it’s all line so they kind of put these like
pressure points on there and try to align it on I guess I just opened up my
veins there and helped no it’s a pot did you ask them it what the experience was
with other patients with pots um well I remember for the for the surgery I was
one of the few pots patients that got it done and like I was really young like
you know most the other patients there they were older and they were getting it
for different reasons so like I was one of the first ones you did that treat me
okay so and but the chiropractor themselves they didn’t have specific
experience with pots people I don’t remember
okay so you were seeing them for what two three years you were saying and and
by this stage you also did the Paleo diet did you do anything else but you
got to about 50% better I mean this is this is good mm-hmm
yeah and I did I did try like a lot of other treatments that didn’t but like
what kind of like um I did like laser therapy treatment where they like a lot
of times they use it to reduce inflammation with the lasers and then
this one they said like they knew like the frequency of the Lyme disease and
then they would you enter that into the laser and then they’ll try to
but I didn’t really feel like that helped at all I did I saw like a
holistic like naturopaths doctor and like you know it seemed like you know it
helped but it didn’t like help like significantly what did they do
and the the holistic doctor um she just did she did treatment some with like the
homie I think it’s homeopathy um just like
different treatments with that and I see what else did I do
I think it’s hard to remember try acupuncture any any other complementary
I didn’t have a very good reaction to that I had like really really bad
anxiety and I tried it both times it happens I don’t want to do this yeah
okay so okay so kind of a slow boil you know I thinks about three years 50%
better I mean 50 was in bed as 50% better you must be happy that’s that’s
that’s great so at this stage but then what did the plateau did it just slowed
down the improvement or um yeah you know kind of the same and but like I was
really happy with it you know cuz being 50% better I could do 50% more things on
I did learn how to drive and I was able to drive myself and I was able to like
make friends again I Jerry going to this college group at my church you know
every week I to push myself to go and so like I I was like happy in comer but
even though I was a hundred percent batteries to functioning you got some
life right yeah much different than just being stuck
inside and okay so you’re 50 now let me ask you you mentioned the Paleo diet
when you made the change to go to the Paleo diet did you find that that was
difficult and or did it change did you have any negative impacts on you in the
beginning no was really easy changed for me because I
am like my stomach felt better almost immediately so like I like all these you
know breads and carbs and stuff like it was so easy for me to you know yes get
that out of my diet just cuz I get how me feel so much yeah so that was the
main the main thing do you think was the gut symptoms when went away when yeah
and um okay so now what what do you do fifty percent uh down the right Road and
things are sort of slowing in terms of the the progress what do you do now to
to take it to the next level now well I just happened to find this
naturopathic doctor who worked with a lot of pots line and line patients and
she did IV therapy and it was first I got a bag of saline which helped but
like the pots because but I had like the hypovolemia like the low blood volume
and then the second bag was it was vitamin b-complex vitamin D calcium and
a little bit of magnesium and I’m the glue to sign huh and I would I started
doing that maybe like twice a week and then I started feeling better I just
kept doing it and then I start feeling better so I went down trees doing it one
time a week and I eventually I know once every other week and then then I just
started doing it whenever I felt you know symptomatic I would go in there you
know every month or so and I feel like oh definitely one of the treatments that
helped me was it expensive yes was it the widow all the treatments
expensive for some more expensive than others very expensive no most the time the
insurance wouldn’t pay for it at all and and okay so you were getting these
infusions you were still continuing with the chiropractic I could do is stop
probably overlapped a little and and then then what did that take you to to
to what level did that take you I mean I felt like almost pretty much better by
then you know after a few years after that yeah so you did these infusions for
a couple of years yes okay that’s a lot of confusion say yes it’s not like you
needed a permanent tap or something yeah okay so um and for how long did you do
it like twice a week and once a week was it like for like a few months two months
twice a week it’s harder yeah and then what do do see what about once a week
did that last for like a whole year or a couple of years or was it just for six
months a few months okay yeah so and then you would just have it what once
every few months it’s not right yeah well whenever I I felt like any did you
find that certain things would bring your symptoms on like I guess stress but
you know I would bring it on I didn’t like sometimes like watching it go
loud movie or like a you know high action movie it was like kind of
distressing to my body I taught her to explain or like like if someone was
yelling like that was like like my heart would like start racing again and you
know it kind of made me more symptomatic okay so so you did these intravenous
treatments you perfect everything so slow down and and and you approached a
full recovery and how did you feel when you start to get symptoms at this stage
I mean if you had little setbacks or symptoms coming on did you still – yeah
I just kept moving forward I really felt like I was gonna be healed 100% it’s
moving for are you scared that when you’d get symptoms that OH
that maybe you’d have a setback or that you’re gonna get really sick dude did
you have any major setbacks along the way I did what you just sit back says I
had there’s a I just cannot eat food at all um I I
still I still don’t know why you know that was it and I had lost a lot of
weight and so like I was really scared at that point um because like I thought
I was gonna die like I was just so underweight and so like you know
eventually you know I I got over that what was that before the Paleo diet
laughter laughter okay so what what do you think triggered that why did that
suddenly come on are you doing well you want the Paleo diet you were you got
some Nisour going down and then what suddenly out of the blue you got what
sensitive is that what happened I I just can any food I ate I just had terrible
stomach pain and terrible nausea when he had other setbacks and what happened did
you just get a sense of faith that you were going to be okay or did you I mean
you know there’s a lot of fear involved I mean it’s like your whole adult life I
mean at this stage I know how long were you sick and total 10 years so and
obviously the last one two or three years you were reasonably well over 50%
I guess and then obviously did the RB and that was pushing it towards the
hundred-percent but as you were doing that I mean you know if you get like a
flare-up of symptoms yes I just want to wonder what’s going on in your head
because people get so scared you know no just you know I didn’t really set like a
time limit for myself to get better I just thought well I’ve the rest of my
life to get better you know just progress progress and you know no matter
how slow it takes I’m gonna be another year then I’m gonna be sick another year
you know just just have to keep moving forward make sense focus so much focus
on the progress I mean you you know you’re done from zero to 50 from 50 to
70 I mean it’s so good right but you know a lot of people find that when they
get those symptoms flare-up it just freaks them right out if they think oh
no I’m gonna go all the way back again did you ever
have those moments um and if not you know what do you think helped you not to
think that way I’m kind of putting I’m kind of putting
words in your mouth apologize so the first question did you ever have that
sort of thoughts that I would maybe get sick yeah that you would slide back
really badly yeah I just really I was awesome you know I mean because it’s
pretty scary time especially when you had all that weight loss that would have
been you know particularly unsettling um what do you think helped you to deal
with all this well there was a few times I did go see a counselor yeah I did you
know tried a few different ones and then I found one who is familiar with chronic
illnesses and pot so you’re just talking about it really helped and and also had
made some really good friends at the church and just like just talking about
my feelings and how how I’m feeling throughout the illness like that helps
me heal you know not emotionally and I feel like healing emotionally it also
helped me heal physically absolutely absolutely and and did you find that
kasumi is pretty you’re saying you know obviously stress was impacting your
symptoms making your symptoms worse so you know if stress like you know some
physical stress of doing something did you find that when you did physical
things that things would get worse like if you push yourself too much yeah when
I was going to the college group it was just once a week it was just a couple
hours in the evening on Thursdays and the whole day on Friday I would just be
in bed yeah never come out they did make you again you know like many people then
become fearful of going to do these things did you not get a bit
disconcerted by that kind of thing I just knew I just had to keep moving
forward I just had to keep doing it like I couldn’t get better just you know not
trying yeah yeah did you ever think that maybe
you wouldn’t go on the Thursday because you can pay for Friday yeah did you did
you not go at sometimes or did you yeah and sometimes um even like halfway
through like I you know I hadn’t like call my mom to pick me up and I’m not
yeah yeah she had really anoxic confidence doesn’t it
I mean it’s so vulnerable in the world on you but when you when you like that
um so yeah what do you think helped you do you think people around you I had a
big impact on keeping you positive I mean this strikes me that you know this
is a terrible adversity for young girl to go through and you know I feel like
you handle it I’m sure you had moments your handler terribly but you sound like
you had a great attitude even after so many years of suffering and and I’m
wondering you know what do you think was key for you to allow you to do that yeah
okay do you think your you think your face had anything to do with it yeah and
I’m just face that I was gonna get better yeah because you mentioned
earlier you had that moment where you fell that religious moment we fed you is
that something that stayed with you afterwards that did you always stay
connected to that feeling yeah I feel like I just knew I was gonna get better
even after setback and step back and you know I just I just kind of hear that’s
just the path to healing you know it’s full of sin axing yeah that’s awesome
it’s a really awesome money and then when you get to a point I mean when how
do you know you when you’re fully well I mean is it the moment where you suddenly
go hey I’m I’m there or is it is it come gradually on you did you find that you
did something in particular you go wow I can’t believe I’m doing this because
you’ve never done it before well I didn’t I’ve been very gradually
but and a lot of times like you know I saw I
thought it was better because you know I you know especially oh I was able to
drive I can drive now like I felt like I was totally better but I mean I still
had symptoms I was still you know Dipel debilitated by them but like I know it
it was kind of hard to tell when I was better um but I did you know eventually
I just say I don’t know just one day like I feel better a late guy I just
kind of notice that yeah and so now that you so took it all in all that was 10
years is that right and how long have you been well now about two years two
years yeah so tell me what have you been able to do since you fully well can you
exercise now can you work can you study yeah I love going to the gym I I’m just
you know I run on the treadmill and I’m like I was smiling I can’t believe I’m like yeah the driving was a huge part um
even then like a you I’m stopped at a stoplight I’m just smiling he was so
happy like I’m physically able to drive I’m you know started a little part-time
job and I started you know going back to school I did graduate with my associates
do for me when I was sake just going to class you went one time a semester or
one class a semester and I graduated it took me seven years to get my sis I’ll
tell ya yeah that’s a real sign of determination good for you but then
after I got better I just feel like you know I want to share my story I want to
share what happened to me and you know I was really involved with the church so I
started taking online courses for like Christian leadership you know I really
hope to someday just like have a ministry for people with chronic
illnesses because that you know I didn’t really feel like there was one for me so
I just you know want to do that so now I’m taking you know it’s a full like
full-time scoring and it’s it’s all like online
courses – so um then I can you know do my modeling part-time yeah it’s
fantastic it sounds like you’ve got a full a full schedule and if do you think
you’ve received from from the whole experience um
compassion um you know Society it really shows us like you know you are what you
do and and what your accomplishments are and your achievements but you know I
felt like I was useless because I couldn’t do it I couldn’t contribute to
society I just I felt like it you know I was useless and but then through that I
just realized no like I man I’m valuable I’m worthy just because I’m a person
yeah I mean that’s that way that’s what determines your worthiness as a person
is just who you are and not what you do how did you find that I mean you know I
appreciate what you’re saying you know deeply and I’m like how did you manage
to do that you know you you lying then you know a house bound for years you
can’t go any without feeling sick having to call mum to rescue you I mean we’re
talking like nearly a decade and yeah you find this well what was your process
well did anything help you I mean I’m just wondering how does that happen
because not everyone does that journey you know um well you know I was your
very reflective and yeah I just had all this time on my hands and I did pray a
lot and I think just like through that like reflecting it with prayer and just
like you know like seeking the truths and like insights I just not really no
okay and do you think that this was something to happen early on in your
journey or was this later on that you maybe later so I guess um do you ever
worry about the illness coming back things like that when people say things
like negative things like that – how do you feel about that
well like the line bacteria it’s still in my blood so you had a test on film
it’s still there so it couldn’t come back you know but I just I don’t know I
don’t feel I don’t know isn’t that interesting so so but you haven’t had
any treatments in years so I so you have no treatments the land bacteria is there
but it’s not creating a problem for you I find that it’s a really powerful
insight to to share and obviously and there’s you know people talk about are
how things can get worse and things like that but yeah why would it have to like
it doesn’t have to does it you know yeah you think you’ve learned anything out of
your experience of the illness in terms of how you live your life that makes it
less likely that you did get like a chronic illness um well I you know
through the whole experience I did learn a lot about health and healthy living um
I still stay away from gluten and sugar because those can like the line bacteria
can like feed on those so I stay away from that and you know the exercising
still really helps and yeah just looking after yourself physically and
emotionally I would imagine yeah um Kiki I love your story um tell me what’s your
message to people what would you say to someone who know because it cannot be
there’s a lot of scary stories out there with it cephus parts fibro a lime you
know and when people go through years of I mean you obviously went through long
time antibiotics and it doesn’t do anything and and you read all these
horror stories I mean the Internet’s scary right yeah what’s what’s your
message to people who are still freaked out of all this I keep moving forward yeah stay focused
there’s a point like I really thought I was gonna die like it is really scary I
just really feel like that that’s part of the journey is healing is
you know going through all that just keep moving forward and even though it
it gets really topic that’s really scary even if you feel like you’re gonna die
like the only way to get where you’re going is to move forward yeah yeah you
know it sounds really simplistic but there’s such power on what you say and
and it’s so easy isn’t it in life sometimes to over complicate things at
the end of the day um you know what choice have you got you know people
often tell me this when they recover they say what choice did I have
you know well yeah I have I had to do something to keep moving forward and and
I find that sometimes it’s um often I find people often that they’re worse
before they start to get better because they find that motivation slash slash
desperation you know look thank you very very much for sharing a story I really
appreciate it I think it’s amazing what you’ve done and where can people follow
you or find you yeah I must be on Instagram at chronically heals okay
fantastic so we’ll include a link underneath and so people can see a
little snippets of wisdom which I see all the time and you know they really
reflect that you’re somebody who’s lifted I can see that with you know they
pop up on my Instagram every day so it’s great to see so thank you very much for
sharing your story Kiki yeah thank you for your reaching out to me and
interviewing yes welcome you

11 thoughts on “Kiki overcomes POTS, ME/CFS and Chronic Lyme after 10 years

  1. Thanks for this interview. Do you happen to know the name of the biofeedback-app she used and also the sensor? Thanks!

  2. Great interview! I love how she said that she didnt set a time limit on her healing. I think that is so smart! I know that I have set time limits for myself and sm disappointed when I am not better by that time. I also like how she said that you have to heal emotionally as well. I think that is so true.

  3. I just realized I said Vitamin D instead of Vitamin C! Vitamin C was in my IV treatment, not Vitamin D.

  4. Thank you both. There is HOPE for me & my daughters. We are all so sick. My head hurts so much right now from watching this but Im so happy for you Peter and Im grateful that you shared your story. Its all too familiar & it sounds like my story. BLESS you Peter. Wishing you all the best.RIGHT ON.😊

  5. Thank you so much for sharing your story. I'm 2 years in to trying to figure out this puzzle, coming from being very healthy, strong, and a regular gym person. Struggling from the idea all my male forebears were healthy strong guys and this has wiped me out to being very dependent on others. Everything helps. Even if it's just a little hope.

  6. I healed from POTS,hypothyroidism, and CFS. healing definitely is possible for those who open their hearts to god

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