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CFS Fibromyalgia MCS  & Chronic Lyme Recovery Part 1 : 33 Years of Failed Treatments

Imagine being sick for over three decades
with fibromyalgia chronic fatigue syndrome (ME/CFS) multiple chemical
sensitivities (MCS) and chronic Lyme disease. Imagine being closely connected to the advocacy
world being an advocacy leader and being up-to-date with the research when
suddenly you come across somebody talking about recovery recovery What’s that
you say never heard of it? Now imagine making a full recovery but imagine
doing it unusually quickly in just three months. Well I’m excited to bring
to you this interview with Claudia which was recorded six months after she recovered
and at the time of publishing now she’s actually been well for over a year.
You can probably appreciate that this would be quite a whirlwind experience
and given her vast experience with the illness and the advocacy world Claudia
has a lot to say and she has a lot of wisdom to impart. So to make it easier
I’ve actually broken this interview into a number of parts so that you can enjoy
them in in bite-sized chunks. Now please don’t make the mistake of skipping ahead
to find that magic cure. The wisdom and the lessons are throughout the whole
interview. It’s about understanding how Claudia made that shift in paradigm.
Claudia actually used the ANS rewire program but what is key is understanding
how she came to use it so effectively and she shares a lot of insights in this
interview. For people in the program there’s also an additional portion that
is published inside the Insight Sections so make sure you watch that. You might
also like to listen to the testimonial for ANS Rewire that Claudia recorded
where she shares her thoughts on what made her experience such a success. So
get comfortable and enjoy this wonderful interview with this amazing lady who
really understands the recovery process. You can binge watch it or you can enjoy it
in small chunks. It’s totally up to you. I look forward to your comments as usual.
Today I’m here with Claudia from the US. Hi Claudia. How you doing? Hi Dan I’m
doing great. Yeah it’s not a loaded question now.
Whereabouts in the US are you? I’m in Phoenix Arizona. Phoenix Arizona.
So the Southwest. Yeah and um look you recovered from CFS and fibromyalgia. you
were in the program and you recovered about six months ago but you were
actually ill a long time and and involved in advocacy as well. Can you tell
us how long ago it was that you became ill? I became ill in 1985
30 years ago. Yeah 33 years ago wow and I guess before you got ill you always a
healthy person? Yeah pretty much I had a thyroid issue as a child but other than
that I was a very healthy person. Okay. Yeah And um so what what happened how
did you know that something was wrong? What were your first symptoms? Um I would
start by saying I was under a lot of stress at that time. I was 25 and I was
recently divorced with a child didn’t have any education or resources so a lot
of stress and I got sick. I got herpes simplex and then two viruses all
in the same few months I would say bacterial viral I don’t know what they
were but I was just really floored with sickness. That was the start of
progression. That was when I began to know that something was wrong. I was not
returning to my old self. Right yeah must have been very tough you know being a single
mom and and then being ill? Yeah.Yeah But what happened? You you went to the doctor
and and what did they say at that point? I you know I was young I was 25 so I
attributed it to stress mostly. Um when I had some real hard core symptoms I would
go to the doctor and try to figure it out but nothing really ever came of it
so I I would say mainly at that time I just kept pushing Yeah
I um I was really pushing too. I ended up going to college and graduate school and
working and I had um my husband now I was dating him so it’s a very active kind of stressful
fast-paced lifestyle. So but I did start at that time trying to figure out
what was going on so the investigation began in 1985 and really nothing was
uncovered for over 20 years. Twenty years that’s when you got diagnosed is that
right? I was diagnosed in 2005. Wow. But because at that point I completely
crashed. I could no longer even get through a shower to get ready to go to
work in the morning. Yeah I was sitting on the floor in the shower
holding my hair dryer up with my you know hand because I couldn’t I couldn’t
even get ready yeah so yeah things came crashing down at that point. I don’t know
why. Nothing had happened. Nothing that nothing different. Just years of illness. Yeah yeah
Well the job I was in was extremely stressful I would have
to say I had been an audiologist a clinical audiologist for many years and I
thought that was what was causing my problems so I left that field and I went into
pharmaceuticals which was horribly stressful. I was traveling a lot with a you
know my car and it was a very very stressful job. So I think that stress was
probably what caused me to have that big crash. Yeah well anyone who has got Fibromyalgia
will know that as soon as we place too many demands on ourselves we
tend to have flare-ups don’t we? Yeah yeah And that
makes things very very difficult. Goodness so long to get diagnosed and
and you know I mean what kind of what led to the diagnosis? I mean obviously
you were so severely ill but I mean I guess you had the fatigue and you had
pain you got diagnosed with CFS and Fibromyalgia? Yeah I was diagnosed by a
Rheumatologist eventually. I think I counted I saw 22 specialists in that
period of time and no one there some people were indicating that it might be
CFS but she actually diagnosed it. Okay I had extreme pain every day all over my
Body. I had migraines. I had cognitive issues that were severe at
that point. I was trying to drive to doctor’s offices that I would call on and
I couldn’t remember how to get to them. I had to pull over and this was before
cell phone navigation so I had no idea where I was. I couldn’t remember words. I
was losing language capability. I was my short-term memory was gone So it was a
lot of hard neurological symptoms that were very scary and then of course the
physical pain and lots of digestive issues. I was diagnosed with Irritable
Bowel Syndrome at that time so yeah the exhaustion was just so much it was
overwhelming and it just at that point I couldn’t get out of bed so I was forced
to leave my job and in the process of trying to get the short term long term
disability with my job they required a diagnosis. So yesI was really pushing to
try to get a diagnosis and yes I had a lovely doctor at the time who also had a
chronic illness so she understood and and did the best she could to diagnose
to fill out paperwork and get to the bottom of what was going on. And did you
have a lot of other symptoms like sensitivity to sounds or lights? Yeah
when I had migraines I had extreme sensitivity to light. I I pretty much
always had a sensitivity to loud sounds. I also noticed that if I was scared
suddenly like my husband used to like to pull pranks where he would just say boo
I could feel surges of adrenaline shooting down on my arms and that was
and so I knew something was really not right with my nervous system. I could just tell.
What what about sleep sleep issues? My sleep was
terrible. I went for a sleep study at a university and they said that I
had a sleep problem but it was not apnea it was that I
had no no deep sleep whatsoever so my cells were not recovering during my sleep.
So that was an issue. Yeah I mean you we spoke before and you mentioned quite
a lot of symptoms. I mean you even you also had
chemical sensitivities is that right? I did. I really didn’t tolerate any kind of
medications yeah and I didn’t tolerate smells a lot of smells were just blah.
I would get a migraine literally from smells if I walked through Home Depot I
had to get through it really quickly. Yeah yeah pesticide smells perfumes
Alcohol. I couldn’t tolerate alcohol at all. Yes One sip and I would feel a migraine coming
on. Yeah yeah and did you find that you’d get run down a lot like and you’d
be susceptible to catching flus and and colds all that? You know interestingly
I did not I didn’t get any kind of flu or cold or normal sickness throughout
at least that last 13 years. Wow wow. Yeah it was the strangest thing.
I would say I’m the healthiest sick person I know. Yeah yeah, well I guess you probably
over the 20 years of illness probably learned how to take care of yourself very well given
how vulnerable you are. Maybe it was a lack of exposure I wasn’t around
children I my daughter was grown I really didn’t socialize that much but
Yeah I always thought it was my immune system was not properly responding
Anymore Right It wasn’t doing its job I don’t know. Yeah totally. So my my relapses
were more in the form of exhaustion and you know a little bit of a fever feeling
and that sort of lots of pain. I’m just thinking you had all these symptoms and
they were obviously severe Yeah yeah And you know you know you had to even stop
working and when you were working you were struggling. I mean you know what did the
doctors say If they didn’t diagnosed you with CFS and
Fibromyalgia I mean like what’s>Yeah I I got a laundry list of diagnoses. I I got
Endometriosis I got migraine I got possible depression which I did not have I got
something called Hypogammaglobulin which is an autoimmune disorder
involving the globulins something to do with elevated Bilirubin I mean they would
pick and choose all these other little things that were obviously abnormal
within the system but they never put the whole package together until this final
you know this finally this doctor said yes it’s CFS and Fibromyalgia. So I had a you
know many many different diagnoses so I felt like I was chasing all these things
around but couldn’t find a common element for any of them. Did you say you were
also diagnosed with chronic Lyme? Yes chronic untreated Lyme. So in in the
late 1990s I was living in Dallas Texas and I was helping build mountain bike
trail and I was bit by a tick. At that time I didn’t understand that ticks
carry disease so I didn’t go get checked up. But later in 2012 there was a Lyme
specialist she is a neurosurgeon actually who practiced holistic medicine
who moved into my town at the time, Albuquerque New Mexico, so I went to see
her and she diagnosed me with chronic Lyme and treated me for that and also for
heavy metals. Yeah and were there able to confirm that the that the Lyme infection
was gone at the end of the treatment? Yeah she retested and it was gone. The
heavy metals were difficult. The lead, I had a very difficult time getting rid of lead.
You know people think that it’s hokey you know tests
for those heavy metals but one of the metals that showed high was
gadolinium and I had gone for an MRI with contrast and they had used gadolinium
and they told me that the half-life of it was very short and that it
should have been out of my system a month before on the test and I records just
it was extremely high. So that was, to me you know some support that okay this
test although it may not be absolute levels it gives me an idea of the
trending so I could see that yes there you know mercury,
lead, gadolinium, you know all these, calcium, were really high and now they’re
really low or gone. Yes And then once she cleared those with nutrition
and herbs and so forth then she addressed the Lyme because she explained
to me that the heavy metals form a sheath around the Lyme disease in the
brain so that it causes it to be stealthy the immune system can even see that
the Lyme disease is actually there. And what was the treatment for the Lyme? It
was also an herbal protocol it’s called Byron white and she chose which ones I should
do and how often. And how long were you doing that? It was extremely low doses.
I did it for three years. It was a long protocol and it involved
nutritional changes. I was, at that time I went gluten, dairy, sugar, and alcohol free.
Yeah. Um I drank only reverse osmosis water. She had
me doing these funky green drinks, you know with
kale and ginger Ok, how did you feel at the end of all that? Much better. My brain brain
clarity was definitely improved. My energy levels
were better. I would say at that point I was operating at 60% of where
I had been you know prior to becoming sick. Right. So it was a huge improvement
but not enough. Improvement but still all the symptoms. Yes, all the symptoms
were still there and the setbacks when you did anything. Yes, yeah.
So took out the Lyme kept the chronic fatigue and Fibromyalgia. Exactly. And a few
other diagnoses that you had as long as the arm. I think one of those did
you say one of the diagnoses was also for Hashimoto’s? Yes. Okay and um so um is
that something that you still would say you have? Uh I don’t think I have Hashimoto’s
anymore I I still take thyroid medication at this point. My, in my adolescence
it started as hypothyroidism and then later changed to Hashimoto’s.
I don’t think I have Hashimoto’s because that’s when it you know
it flip flops. it doesn’t do that anymore. Right
It’s stable normal. Um I don’t know what would happen, I still take the medication,
if I stop I don’t know at this point, and it’s possible that I don’t have it
anymore. Yeah interesting. We’ll talk more about that a little bit later. Yeah
Okay so um what would you say having CFS and Fibro was like at its worst?
I mean is there a moment, I mean you mentioned that that moment in the shower?
Would you say that was your low point? Definitely. Or was there another point? That was THE
lowest point for me. I I was bottomed out. I had nothing left. I I was so afraid
because you know at first I was afraid because I didn’t have a diagnosis then I
was afraid because I had a diagnosis and basically she said you have these two
things and there’s nothing I can do that’s more than what you’re already
doing .Go home and keep doing what you’re doing. That was so scary.
Yeah. You know trying to navigate through the medical system .Thankfully I had my
experience in the pharmaceutical and audiology fields because that helped me
have the knowledge and skills to navigate with physicians. I knew how to
talk to them. But you know it’s a scary place to find yourself with a chronic
disease and having no one help you. An incurable disease. Yeah, An incurable disease you’re
told. Yeah and not knowing what that means for your future and you know your spouse is
looking at you like what what did the doctor say?
What are they gonna do for you? Because that’s the
natural response. You get sick the doctors tell you what to do and that’s not the case.
So you’re just left floating in this terrible place.
I mean 20 really 30 years right yeah thirty three years.
I mean how are you getting by with your life? I mean did you even know what
normal was? Did you even know how sick you were? I mean? No. You know how how, you must
you know how did it impact your life? I think
it must be hard for people to understand what it’s like to be
sick for three decades. Yeah it’s hard for me to even wrap my brain around it because
I would say that outwardly I’m a very optimistic very positive,
I’ve been called Pollyanna. You know I’m just that kind of
person. I always try to look at the bright side of things. Yes But on the inside I was
sad. I was so Broken. I I tried not to go there to that
dark place because it was not helping. It isn’t a place you can cope with it very
easily is it? Right no you can’t go there. And so you just don’t
even want to think about that stuff because. No you just can’t you can’t afford
it because you’re too ill. Right Exactly. Um and I’ve always been a helper I mean it
you can see that from my fields of choice. I was an
audiologist. I liked helping people so for me to be the
person on the other end was extremely uncomfortable I wanted to be helping so
I think that’s why I found going into advocacy a natural fit. Yeah. Because I felt
like no one should have to go through what I went through in terms of getting a
diagnosis and then feeling so isolated and having not known what to do or where
to turn and Yes the responses from from other people in society were awful
sometimes. In fact the caseworker for the company I work for a top five
pharmaceutical company she said to me one day you know if you had cancer this
would be a lot easier. I mean I I don’t even know what to do with that. Yeah. Yeah.
It’s just terrible. I don’t even know what to say. Yeah I had no response myself. I’m
just waiting for you to take the conversation forward because I’m feeling a bit stuck.
Yeah. Yeah yeah. So people don’t know what to do with you I guess is the point I’m
making. Yeah People in society don’t know what to say or
do because they’re used to you got sick you get fixed
This this whatever this ME/CFS Fibromyalgia world is is so unknown to
People. Yeah It’s terrible. So so it took you 20 years to be diagnosed. Right. Yeah
and then so then you were off work there for like 13 years is that right Yeah
yeah. And all that education that I spent so much energy on and money and Yes and time
you know yeah no work. And I mean you’re just doing your
advocacy work in in theCFS Fibromyalgia community and and what what what what’s your
average day like? I mean how does how does life look after 20 years? Yeah so
I would also say I’m a doer another I’m not a person who likes to just be Yeah Which
is good and bad because I learned through the disease and recovered process
that just being is actually healthy but doing was my thing and so I I
think I got into advocacy because I was looking for help for myself but through
it I realized I could help others. and so I took on that role. I created
actually a 24 hour mountain by race that was a benefit to the CFIDS Association
and I ran that for three years. Wonderful So it was really successful
and I was very proud of achieving that even though I was sick but I got to a point
where I had to step away from that. Yeah I was
gonna say I mean what toll did that take on you physically? A lot because you know even
though it was a one weekend a year it took a full year to
plan. Yeah. It was quite a lot of work and but out of that came the Facebook group
that I utilized for my advocacy so I kept running that from 2007 until 2018.
Wow so that was how big was that group? It was thousands of people so it was a big group.
I also served on a couple of platforms. I was on a US working group to
the CDC for ME/CFS and participated in the Pathways to Prevention the P2P meeting
for ME/CFS at the NIH for the they created that Institute
of Medicine report about the disease in 2015. So I was pretty involved
in all of that. I participated in some FDA meetings patient centered stuff
so I was pretty involved with that on a daily basis so that kept me busy. I also became
an artist during the time that I was sick. Yeah yeah That was a beautiful coincidence.
Yes. And actually very therapeutic. I I. it’s difficult to become
a triathlete whilst we have CFS? Yeah yeah. I could see how that would have been a wonderful
fit to give you some kind of an outlet and and I guess help you keep some semblance
of happiness because like I said you felt very sad
inside and you’ve been robbed so much and you can’t work and you can’t
participate with your family and all this kind of thing so yeah I mean what a
great great way to have an outlet, I mean yeah it sounded like I was perhaps
putting some words in your mouth from our previous conversation but can you tell
us what why did it affect your relationships and and with your family
and friends? So for my husband and I it was a huge impact because we actually
started mountain biking together in 1985-86 so our entire life was surrounded with physical
activity I was not an athlete as a kid it wasn’t until I met him that I
started doing athletic activities and so we you know we were on tennis leagues and
softball teams and play volleyball and skied and had this very active lifestyle and
hiked and biked and traveled a lot and my daughter does all of
those things too so you know most of my family activities were physical. All of
my friends are athletes so I felt so isolated and and jealous very jealous. I tried
going to events and participating as a spectator and I just I was so filled
with bitterness I couldn’t even go anymore. I It’s a slap in the face isn’t
it? Oh yeah let’s celebrate your amazing achievement whilst I can’t do anything ever.
Yeah Yeah whilst I get to sit here on the sidelines
for the next 30 years. Yeah It’s hard to keep cheering people on you know? I have to
say even my husband didn’t quite grasp the severe nature
of the impact that it had on my me. Yeah We had conversations about that early
on and I said I don’t think you understand what it’s like to
lose the ability to do what you truly love to do. And he said well no if it
happened to me I would just find something else that I love to do. And I
thought wow, you know the words flow out so easily but it’s such it. Try living it. it’s
such a difficult path to take with grace. Yeah. And
I tried to take it with grace, Yeah I think it sounded like you did fairly well
but there’s a limit to what any human can do isn’t there? Yeah and and it
appears that with ME/CFS and Fibro we love exploring those limits because just about
everyone I speak to whether they’ve recovered or their still ill with it um I
find them so inspirational. And you know including people who haven’t recovered. You
know? The people who are ill with it. Oh yeah. It’s like they inspire me I mean how they
just manage it you know? Yeah. And because maybe when I reflect on my own years
many years of illness, not compared to you, but you know? Yeah. You know
the best years of my life one might say 7 years of illness in my 30s, yeah I I
I don’t think I did such a good job coping with it at all. You know? Especially
as the years go on you know and we go through these crazy cycles. Look
uh you mentioned your treatments some of your treatments. I mean you know obviously
you come across a lot of ideas a lot of theories. You’re in the advocacy
world you’re in the research you know not as a researcher but you’re connected to seeing
a lot of research with your advocacy work. You must have tried a lot of treatments over
the years? I tried so many things. I tried so many
and in fact you part of the answer to this it goes back to your prior question about
what was my daily life like. Some of the coping
mechanisms that I tried to initiate helped me I think cope but also helped
me stay at a certain level with the disease as well. So
some things that I did were, art, obviously I learned to do art. That was something
that activated my brain but also my spirit. I also learn to plan a musical
instrument on my own because I thought that that was important for my brain.
I couldn’t do it very often and I was terrible at it but it was good stimulation
for the brain and I knew intuitively that I needed that. I did word
puzzles. They were so so difficult but I did them. And so I feel like
all of those little things were helpful to me. To give you some semblance
of still doing as opposed to just staring at a wall feeling sick. I was so afraid
of atrophy, physical and mental atrophy that I I wanted to keep doing things.
Those things plus I still did a lot of physical activity that most people
with the disease can’t do, but I didn’t do them well and I didn’t recover from
them well so I would never recommend that. Yeah. In fact I probably it
was causing more harm than good but I I just had this fear that if I stopped moving I would
die. It was just that’s just how I felt. Did you
try a lot of different sort of treatment protocols or? Yeah. I mean you must
have seen a few doctors in those years? I tried lots of different supplements.
Whatever people would tell me, try this try that. I tried I did herbal
protocols. I did chiropractic, physical therapy, acupuncture, yoga, tai chi,
chi-gong, and
I tried steroids once or twice just low doses of them. I’m trying to think of what else
I did. Movement. I I always moved. You know, walking,
you know yoga stretching whatever. Did the doctors try and come up with like
different medications and things like that? Did you stay
connected to doctor over the years? So yeah I always did, yeah but they really
didn’t have anything for me. They suggested antivirals for herpes simplex
but you know I only did that for treatment when I had a flare-up but those just
made me feel awful anyway. No. So what are you what are you
thinking at this stage? I mean it’s been 30 years. I mean I mean I imagine you
wouldn’t really, I shouldn’t say, it I mean were you expecting to recover again
one day? No. No. Did you think but when did you give up on the possibility of recovering
your health? Probably because I’m so involved in advocacy and I saw the
research coming through I just didn’t ever feel like anything, okay, my this
is what I felt like. I felt like there was a wheel to recovery I felt like the
the research that’s out there, especially now there’s some really good
research right now.

2 thoughts on “CFS Fibromyalgia MCS & Chronic Lyme Recovery Part 1 : 33 Years of Failed Treatments

  1. How did she get well? With what treatment that cured her……..please let me know as I have CFS for ten years

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