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CFS Fibromyalgia MCS  & Chronic Lyme Recovery Part 2 : Turning Point

What are you thinking at this stage- I mean
it’s been 30 years I mean I mean I imagine you
weren’t really, I shouldn’t say, it I mean were you expecting to recover again
one day? Did you think about, 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, they were the spokes, right? Everybody’s
got a spoke that they believe is the answer but no one had the hub. There was
no hub, there was no common denominator to all of it um and that’s
where your program came in. To me your program was clearly the hub that tied
everything together. It just clicked. As soon as I read it I thought that’s it,
this, this make sense. Yeah yeah so you feel that was the turning point or do
you think a turning point happened before that?
No this program was definitely the turning point. I think I I had prepared
my body a little bit by doing the Lyme treatment for the three years starting
in 2012 yeah I had a better baseline. Mentally I was definitely prepared to
receive the information that recovery was possible. I’d lost both my parents in a
short period of time and moved to a new state so I was feeling like yeah you
know I can’t I can’t be like this forever. I can’t what happens when I get
elderly and you know I saw my parents deteriorate and I thought oh god with
this disease how is that gonna look. Claudia I mean you know like you’ve been
suffering for over 30 years I mean I imagine that you were just as motivated
and just as unhappy we and and unaccepting of the illness in the
beginning or in the middle or many times you know? And and I’m wondering I mean
what what changed. What changed? Yeah and how
could you even be open-minded? I mean you had you heard of other people recovering
from the illness? No no. Okay. I, well I shouldn’t say no. I’d
heard of one guy who claimed to have recovered from it and I investigated it
and it was not solid so no. I had never I had heard of people who have recovered
early on in the disease. Yeah. Maybe in the first year or two and I always thought
well they probably didn’t have it they probably had something else
chronical fatigue maybe, the symptom not the disease chronic fatigue syndrome, right
there’s a definite difference between those two things. Huge difference. Yeah so
no I didn’t believe recovery was possible. I wasn’t seeking out recovery when this program
came to me. But then why would you even consider it? I mean if it why get
some book you know from some bald guy from Australia and it’s like a book
like you’re in touch with all the research? This guy says yeah maybe it’s
possible to recover. I mean I mean surely that doesn’t sound right.
Yeah. So this is how it went down. So the book, I think he requested to post the
book on my Facebook group and I never posted anything that wasn’t sound
research. That was the premise of the whole group. So I thought well okay, I
can’t post this until I check it out okay, so I went to the website and I
downloaded the first Discover Hope book and I read it and I thought oh my gosh
well so far this is this is clearly based on reality and biology and he
knows the disease so I was intrigued enough to keep reading. So I I also
watched a couple of recovery videos and I could see the authenticity in those
videos. Yes. It was definitely not snake oil and I knew that. I mean you must have been
shocked. I mean being involved on the advocacy and
and the websites and all the stuff you’re doing and then yeah you fund this website
with recovery interviews and you’re listening to them and they actually
you can see that people really ill and who have really well and. Yeah. I
mean what must have what was what was that first video like for you and what’s going
on in your head? You know I still had tons of scepticism because here were the
thoughts in my mind. Well they were not as sick as me, or they had some slightly
different version of it than I did, or they have just a different makeup
than I do and so they could do this and it worked for them. I’ve tried everything
it’s not going to work for me. Yeah yeah. And so there was this huge barrier I had every
every excuse in the book who was coming up right but I still felt intrigued by
what I was reading and hearing so I ordered the book and I started reading
the Kindle version before the Amazon book arrived and all this was in one day.
This was not over period of a month. It was one day. So it was just I was
flooding myself with it because I couldn’t get enough and and I told my
husband when he came home and I said you won’t believe this. This is phenomenal. I
can’t believe I haven’t heard about this before and this make sense to me. And and
I think that was a point in your book where you had five steps and one of them
was to align yourself with a Naturopath and this is so bizarre but that
week my neurologist, just in passing had said by the way, we have a naturopath
on staff here. Why don’t you set up a consultation? And I had just set that up
and so I felt like, this is really bizarre, but I felt like all these things
were unfolding in front of me, someone was going like this, right and and in the
past I think I’ve ignored those and I’ve learned that you should never ignore those
and so I am going to open myself up to this and
just just try. It doesn’t cost that much, it’s it’s
it’s not gonna take that long for me to just try. And look I’m assuming that those
recovery interviews weren’t of people who were in my program. Theywere just
people who recovered in all different ways that you saw. Is that right? It was a mix
yeah. it was a mix. Yeah yeah. A mix of people.
Because that’s how it started. It was never about the program. It was just about
the people who recovered. The people who recovered. Yeah. In whatever way, you see now? You know
it’s interesting because as you watch those you
see common threads though. Yeah. I hope people see that but I’m not sure that they do.
I definitely did. I saw a lot of common threads and in what people try and what seemed to
work. Yeah okay so okay so you decide you’re clearly
thinking well this this is possible maybe for
other people. I’m not sure if you’re convinced for yourself. I was not. And then
you decide to go into the ANS Rewire Program. Um, how, now look again um you know I just
wanna say to anyone listening you had one of those what I would say atypically fast
recoveries that there is a proportion of people who have
these very quick recoveries. There’s there are reasons
behind that but I always want to say you know don’t expect to have like such a fast
recovery as you did. Yeah I didn’t expect that. You know
I took somewhere between 12 and 24 months to recover. Mind you I didn’t have
all the resources that you did but many people I meet recover in a year, a year and a
half, so it really varies you know? Yeah. And what I would say is that it doesn’t
necessarily depend on how sick you are either. Right right. So strangely enough I
often see some of the sickest people take the least time and some of the more
well people actually take longer. Wow. And it gets very complicated and it certainly
is very frustrating it’s very counterintuitive
so yeah it’s a bit all over the show. But can you tell us a little bit how long
you know it took you to recover in the program and how long you’ve
been well now? So I started the program March first and by the end of May
so three months later I had completed the program and I thought that I
was about 85% recovered but in our conversation at that point I realized I’m
a hundred percent recovered! My brain just hasn’t caught up with the idea. Right.
I just I hadn’t experienced enough positive experiences events to you know solidify
the fact that oh my gosh this is really this for real. Yes actually I do remember
that that conversation because you said 85% of recovered. I said fantastic
that’s great, congratulations. And I said so you know what symptoms do you still have?
What kind of things will still trigger flare-ups? And you go well I have no
symptoms, nothing I do through triggers a flare-up. I go well like 85% that’s 100%.
The look on your face was like yeah. The brain is a little slower to react.
Three months is a really short period time to catch up I mean obviously very
confusing time and I know you’ve had you know a confusing time afterwards still
trying to adjust to this reality. And look I certainly relate to that. I often
tell people that after (inaudible) never been a runner I actually don’t like running.
I can’t run now but I did run because I could and and I remember
I was running, I don’t know how long, 10, 20 minutes running a beautiful sunny afternoon
and I hadn’t been ill in in Years, not in years, in in in in in you know
maybe six months, I hadn’t had any symptoms. I’d been able to do whatever I want
no flare-ups it’s all good right? Yeah. And I tried to think of myself as a
well person and I realized even whilst running and not having any symptoms I couldn’t
do it because you know you get so smashed up. Yeah. So many years.
Right. It’s like who you are and and it’s really hard to think of yourself as well even
when you are. You know I I don’t even think I know what well is still, right?
Yeah it’s difficult to embody that still. Yeah yeah.So look this is obviously
a lot of people who are listening who are not
in the program and you know I want them to get something out to see in an
interview whether they get into the program or not it’s not. Like it’s not
about you know this is not like a promo. The interviews have always been with
people doing whatever, right? And and they’re not advertisements for other
programs. They’re about sharing insights and and about them learning something. I mean
first of all what would you say to them even is the program? I mean online
program? I mean you surely you’re supposed to get treatment from your doctor to get
well? How does this make any sense? Well so for me I would describe it as
comprehensive first of all because I feel like it contains all of the
elements necessary to attack this disease so nutrition and movement and
pain management and brain training and sleep training
I guess, posture, you know so all these different elements all combined and it’s
multilateral and and its presented to you so that you can do it at a
self-paced and it’s self-paced environments so you watch the video as
you can as you feel like you’re able to. Was that important for you? Yes yeah
because there’s always when you’re sick with ME/CFS and Fibro there’s always that
background fear that you know what if? What if I do too much? I’m gonna have a
relapse . Or you know what if I can’t pay attention long enough? And you know so
yeah, that’s hugely important. Okay take it as you can in small segments. Don’t
do it tomorrow or do it the next day, you know do it as you need to. Or go
back and do it again if you have to. Yeah Do it six times, it doesn’t matter. You
would have obviously done probably many of the things in a program already um. I had,
yeah. You know I mean people do things like pacing
their activity so that they don’t get flare-ups. Yeah. People change their diet
to have a healthier diet. Many people do gentle exercises like yoga. Many people do
you know some mind-body things you know like some meditation. If you’d been doing all of
these things I mean what do you need the program for?
I mean. That’s a good question. Tthere was there were a couple of huge missing elements
for me. I was already meditating but when I ramped
up my meditation as recommended it really had a
big impact on my nervous system. I felt it happening. In fact felt it enough that it
scared me. While I was meditating sometimes I felt these
strange sensations happening so it was definitely setting a foundation. Yeah yeah.
What kind of what kind of strange sensations? It was um and I later I googled
it and found out that it’s pretty natural but I would go and so I was doing
a 45-minute session every day and I would go through these sort of like 10 minutes
cycles where I would fall deeper and deeper into my meditation and it felt
like I was leaving this planet it was definite escapism. I was somewhere else
and it was almost like when you’re falling asleep and you have that ahh,
you know that jolt? Yes. That was sort of what it felt like. Like I went somewhere
and then I realized there’s like the other part of your brain says whoa
where’d you go and then poof I’m back and oh. Yeah it’s literally like that isn’t
it? Literally, woo, but then it felt really good
at the same time and so I started to just learn that I needed to just
relax into it just yeah you know and it was the same principle with pain. Yes.
I needed to relax into the pain and not fight against the pain.
Yes. So yeah I learned some lessons through both of those examples for sure. So the
program obviously encouraged you to work with other professionals if if you need
to? Yes.You mentioned you had a neurologist, you had doctors. Did you do
anything new or different with them? Did you end up working with that naturopath? Were
there any other treatments that you used in adjunct with the program as the
program encourages you to do, that do you think was important? Yes, so a couple of
things that I did some of the things I stopped doing that were helpful one was
leaving advocacy before I started the program and and this was just something
that came up with in myself. I felt like I had part of me in both
worlds, the sick and the healthy worlds and and I couldn’t be split like that
anymore and my being he wanted to health, you know
I wanted health more than anything but we all want that right? So I decided well
being over here in the sick community is not helping me achieve that goal. I kept
hearing through my meditation practice what you focus on is what you become and
so I decided okay I’m gonna give up the advocacy and I’m going to give up
contact in social media with everything having to do with the sick world all
that. That must have been hard? It was very traumatic. It was very difficult to make
the decision but once I did it it felt like a huge relief. It was it was very
liberating. Did you a hand like the Facebook group did you hand it over to
someone else to manage or did it just stop? No I had three very helpful
people who had agreed to take it over and they still run the page so that it
was you know I felt comfortable that I could do that without letting people
down. Yes yes. So yeah so now I am. You can wave them a quick hi now. Hi guys, thank you!
Okay So that was something I gave up. I also gave up my weekly massage treatments because
I felt like they were actually at a point where
they were causing me more pain and harm than they
were helping I had done that for many many years probably two decades so I
stopped. So that was two things that I gave up. Yeah what made you give that
up? Was it just you intuition? I think it was because I moved I had a different
massage therapist and it just didn’t it didn’t work well anymore.
Yeah. But I realized that once I stopped I didn’t need it. It wasn’t helping. So
then I did a steep I did start seeing that naturopath and on my first visit I
gave him your book actually because it was the timing of such. I I just had
started reading it and I said look you know I’m not pushing this on you but I
just want you to be aware that this is something I’m following right now and if
you and otherwise I’ll listen but but you know
I’d like for you to know what I’m in. So he actually purchased the book and read
the book and I think he called you. In my next visit he told me that and I was
floored because I had never even been to a medical provider who had acknowledged
ME/CFS before, let alone someone who would go that many extra miles. I I was
so emotional I think I cried in his office. And every time I see him he
thanks me. He thanks me for helping him help his patients. Yeah that’s wonderful. Oh
yes he’s phenomenal. Yeah so he was super supportive
which i think was really helpful for me but he did make some changes.
He doubled my thyroid medication and you asked about that. He also added progesterone.
I had a hysterectomy back when I was 38 I had endometriosis that was
another one of my laundry list diagnoses. And and I actually
it’s my firm view I understand that there are people who have
endometriosis who don’t have CFS and fibromyalgia but
it’s my firm view that that those things are connected. Some people who have CFS
and fibromyalgia the fact that they end up with these issues is due to the root
cause of the illness. Yeah. It’s it’s not coincidence because people always think
how can I be so unlikely to have so many different illnesses. It’s like am I
cursed? And it and it’s like well it’s not it’s not different illnesses it’s
Right it’s it’s just one thing. Just a different expression. Yeah that’s right. Yeah and that’s
what it felt like on the inside. Yeah and some of
those things take on a life of their own you know that all needs
to be addressed but yeah it’s it’s all connected. Yeah yeah. So he added I was on
estrogen, he added that progesterone and actually the progesterone work synergistically
with the estrogen. I didn’t know that it would help with the estrogen.
It also helped me sleep better. Instantly I noticed I was sleeping much better
and you know once you get some good sleep you start feeling better so it
helped me it was a good starting point. I think he
tweaked a couple of supplements too. Yeah. Nothing dramatic. I was maybe taking
five or six, and that’s it. Yeah. So these were like like energy metabolism
kind of Yeah vitamins D3, B12, C. Yeah yeah that sort of thing yeah. So did
you make all the changes at once? I mean when you first start to notice some change
I mean what are you thinking? So no I didn’t make them all at once. I was very
slow. In fact he kept asking if I wanted to take progesterone and I kept saying
let’s wait because the thyroid you know and the supplements and this program
and I I’m all about the scientific approach, you know, change one
thing and see what happens so we did it very slowly very gradually. But I would say first
and foremost I noticed my sleep was improved and and part of that was the
progesterone but part of it was the sleep part of your program. I practiced good
sleep hygiene which I already had done most of but I hadn’t incorporated all
of it. I listened to the sleep video I didn’t do it very often but I did it enough
that I knew what it was and binaural beats were part of my practice
too so I did that at night. Let’s see so that that word those were some
of the first things I noticed and then I noticed that, and I don’t remember
when it was in the program, several weeks into it I think I noticed, oh my gosh I had
three consecutive days where I felt good that was new what was that about? You
know, and of course my reaction was oh that’ll never happen again but that was
great yeah. And then I started noticing that in the
evening I still felt like I did when I woke up in the morning. You know there wasn’t
that oh god I I can barely make it through the rest of the night, you know? I
still felt like I could take a shower and go out and do something! I started experimenting
with doing activities in the early morning because prior to that I
could not function in the morning at all. If
I tried to do anything in the morning before say 10 or 11 o’clock the
rest of my day felt horrible. I would get a migraine or I would have exhaustion or
it would set off a full-blown relapse and you just just going to a
doctor’s appointment or anything so I noticed that I could start doing that
and it was okay. My days became longer that was a bonus. Yeah. Wow I have this
whole block of time to do stuff now. What do I do? Yeah.
Now obviously pain yeah pain is real you know obviously nobody is suggesting that
you’re imagining the pain or anything like this and you know you’re doing a lot of
different strategies like you say ANS Rewire is multilateral. It is based on the
idea though that it’s not just central sensitization but there’s other
processes that are wrong in a body, inflammation, gut dysfunction, lots of
things, and it’s also talking about the fact that really what’s driving all of
this is the dysfunction of the autonomic nervous system. So you’re doing all of
these things and there’s some specific things for pain but I mean how did the
pain resolve? I mean how do you go from having pain all the time to now not
having any pain? I mean yeah it did happen in one go? Was it was it a
particular strategy or treatment or how did this happen?

5 thoughts on “CFS Fibromyalgia MCS & Chronic Lyme Recovery Part 2 : Turning Point

  1. I am doing ANS Rewire right now. I am on video 13; and wow, that's all i can say is wow! The knowledge, the knowing of what is happening to your body and mind is healing within itself; and as Cladia has stated, it's a very balanced, multidimensional program. I have been sick for 15 years, although i am making the connection of smaller bouts of the illness when i was a little girl, as well as when i was in the Air Force; and than the big crash, the perfect storm, at 40 years old. I resonate with Claudia's experience, it is closely related to my own. I listen to one success story at bed time every night and it gives me hope. Thank you for your program Dan. I don't know where i would be without it. I had my first good dream in many years last night! It's difficult to sleep due to the pain and when i do sleep, i usually have bad dreams. I can't believe it, an actual good dream! That's a big deal for me! It's a start! My hope and prayers to everyone who is suffering from this illness; may we all heal. đź’–

  2. I'm sorry I think your interviews need more meat. I came here looking for solutions and most of your interviews are like 80% a testimonial for your products, not getting to the heart of what caused the healing and recovery.

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