Alexandra tells of her recovery from mould illness and chronic fatigue syndrome.
Alexandra tells of her story of 4 years of illness and the pressure for her to take medications for mental health diagnoses that she felt were unhelpful.
She talks about the myriad of treatments including when the ‘woodpecker attacked her head’, and treatments that led to her losing her most prized possessions.
“You know you’ll never be the same again, right” – those were words that had a shocking impact on her. After trying many doctors and exorbitant costs and taking 42 different medications at the same time, she finally realised she needed a different approach.
She tried a brain-training approach but remained ill, so with some trepedation she finally tried the ANS REWIRE recovery programand tells of how her recovery started to take shape.
|Introduction - I am different||0:00:00|
|Illness onset with visit to emergency room||0:04:53|
|Alexandra talks about the pressure to take medications for mental health diagnosis||0:10:05|
|Alexandra talks about depression and anxiety about her illness and the lack of validation||0:11:46|
|Alexandra talks about the domino effect of symptoms||0:15:08|
|The 'woodpecker' attacks her head||0:15:48|
|The terrible impact of one Doctor's words on Alexandra||0:17:08|
|Alexandra finds a new community, treatments and diagnosis of Mould Illness/Mould toxicity||0:18:21|
|The inconsistencies and frustrations around mould illness and mould illness treatments||0:20:08|
|The no win situation with getting mould treatments - the impossible task||0:27:58|
|Alexandra shares the shocking financial impact of trying to treat mould illness||0:29:22|
|Finally a new diagnosis of CFS for Alexandra and a new direction||0:31:15|
|Alexandra talks about her symptoms at their worst - bedbound||0:35:04|
|Alexandra talks about her first failure with trying brain-training||0:37:15|
|Alexandra talks about the impact of unresolving illness on her and her family||0:39:24|
|A new direction and merry-go-round with integrative medicine||0:40:46|
|Alexandra talks about her turning point in mould illness and CFS recovery||0:46:10|
|How ANS REWIRE was a different experience to other brain-training programs||0:48:18|
|Alexandra finds her tribe of fellow recoverers||0:50:21|
|Dan asks about overwhelm in dealing with a multi-lateral approach||0:51:05|
|Engagement with other health care professionals whilst doing ANS REWIRE||0:55:32|
|Dan asks about trepidations with trying 'brain-training' again for CFS & mould illness recovery||0:56:57|
|The importance of mindset and coaching for recovery||0:58:08|
|When did significant recovery shifts occur||1:00:56|
|The experience of the rest of the recovery tribe||1:06:15|
|Alexandras recovery journey & people's responses||1:08:02|
|How Alexandra tapered off treatments during her recovery||1:11:02|
|Dan asks about how important the physical training lessons were for her recovery and ANS normalisation||1:12:06|
|What about the fears around physical activity and mould exposure||1:14:06|
|Alexandra focusses on incremental gains for recovery from CFS and mould exposure||1:16:34|
|What Alexandra learned about engaging in life from her illness experience||1:19:28|
|The most Amazing moment since Alexandra recovered from CFS & mould illness||1:24:36|
|What advice Alexandra would give to someone seeking recovery from mould illness and CFS||1:26:13|
Here is a link to the ANS REWIRE website.
Please leave a comment at the bottom of the page!
Well, I'm really excited to speak to another CFS recoverer, somebody who recovered using the ANS Rewire program. And today I'm speaking with Alexandra from Wisconsin. How are you doing Alexandra?
Hi, Dan! Very well. Thank you.
It's lovely to connect with you today and to hear your story of your amazing recovery journey. Now I see you’re from Wisconsin in the USA, but that accent suggests to me that perhaps you are from somewhere else originally.
Yes, I'm originally from Romania, so Eastern European accent. I moved here 14 years ago.
14 years ago, OK, I bet that was a big adjustment.
Yes. So whatever accent it is, it's here to stay.
Yeah. I'm in the same camp, don't worry. Look, how old were you and how long ago was it when you first started to become unwell?
It was four years ago, so I was 35 and 1/2 years old at the time, so more exact, December 2017 is when.. was the onset of my symptoms. It's hard to forget because it started with a visit to the emergency room.
Wow, OK, that sounds traumatic. So what happened?
So the initial symptoms that I had was some shortness of breath that was just there for a few days, so it became quite hard to breathe, so I went to the emergency room. There's nothing else serious, so they just put it on anxiety. And then went back to my family doctor and they did some other type of tests of some pulmonary capacity test and everything came normal. And that's where the journey with my illness began.
Had you experienced anxiety before?
Yes, I did. Nothing that sent me to the hospital. Nothing that needed medication. Here and there a little bit, the last maybe 5-6 years, I did feel it sometimes. I was working in retail so sometimes towards the holiday season and the crowds, or being a little bit claustrophobic here and there. So at this point I didn't think that it's more than that. It was December. It was, you know, the holiday stress. So we thought that it's nothing more than that. It's just a little bit more severe than all the other times.
And what happened next?
So the following month, February, I started having some lightheadedness. It just didn't go away, So this becomes the second symptom. And from here, in a matter of weeks, it was, you know, full blown brain fog. That was just so severe but it's not ideal to go to the doctor with these symptoms because they don't really understand it. They become very hard even to drive and turn my head to look for traffic. Any sudden movement of my head, uhm, it was difficult. I always thought I need to rest my head. Even when I was hearing, it was basically in bed and just kind of rest in my head like sitting in bed, so this was the next symptom that I went to the doctor with then. I complained so much about it that they even sent me for an MRI for my brain. It came normal. So with every new test that they did and came normal, I feel more that they thought that this is just psychosomatic, basically.
And the breathing, the breathing issues, did they persist as well?
Uhm, no interesting enough that somehow dissolved, so now it was all these severe brain fog and kinda like a total mental exhaustion. It becomes very challenging to sustain conversation, to maintain eye contact, because that requires, like, some focus. So it started affecting affecting my job a lot. I got really scared of what what was happening. Uhm, I felt like I lost my appetite or I started having a problem sleeping. So they start to accumulate one after another.
And what were you thinking? Well, what's going on? And what was your doctor saying?
I was lost. I didn't know what's going on. Before I had the MRI. I was hoping that, like, I was actually going for an MRI, hoping that they find something. I was so desperate that, like I was hoping they find something, even if they take me straight to surgery or you know, so it's something in my brain or something, and I did not know I was just constantly going and just telling them what's going on, hoping that they give me an answer and they did not have an answer but they were starting to want to put me on anti-anxiety and antidepressant medication. It becomes almost a pressure from the doctors and from even family in some ways that you have to be on some sort of medication. And that was the initial treatment that everybody had for me. It just put me in a depressed.. they told me I'm depressed. I didn't tell them I'm depressed. They put me in that category.
Kinda sounds depressing.
It becomes very depressing. When your life is taken away from you and it was, a whole loop of not having answers, but meeting the doctors because I couldn't work. My performance was affected so I had to take some breaks from work. So all these needed papers signed from the doctor, and it becomes a constant loop, seeing doctors all the time trying to go back for them to sign papers in some way. I tried that for like 2-3 months, it's called, here in the US. It's called an intermittent type of relief. So just go for as much as you can and then go home and come back. And after that, by the beginning of summer, June 2018, I had to get into a short term disability from work. At that time it was not even six months in, so they were still rolling with the depression diagnosis at the time.
Right. And did you- I mean, it must be pretty anxiety provoking, right? You probably felt a lot of mental anxiety and maybe even depression, I imagine, dealing with all of this.
Yes, absolutely. At that time I did not get any validation for what I was feeling. I did not know about CFS. I was not in any help group, so I don't know anybody that was feeling what I was feeling. It was hard to explain to people why this is going on. Some people just assume that something major happened in my life, like some sort of a trauma. Knowing how I was before. So, nothing of that matter. And yes, it becomes a very lonely journey in a house full of people, basically. That's when I was in.. I even did an outpatient program. Basically I was going with anybody that was listening anyway, so for awhile if they were telling me that this is what it was. I was in such a vulnerable place that whoever was listening or trying to find a potential solution for me, I was going with it. So I even did an outpatient program for depression for like 5-6 months or 5-6 weeks, sorry, and it didn't really apply to me 'cause there was nothing to fix in my life around it. You know most people were there because of particular situation that happened in their life as a relationship, or grief. And I could not relate with that. So still a lot of question marks even after that episode.
Yeah no, I understand. So. I mean, what were you thinking? Were you thinking this is depression? Were you thinking this is anxiety? What's causing your illness?
Yes, so at this point, my brain fog was the main symptom, so it was like an extreme mental fatigue per se, but it didn't really.. was not in the whole body quite yet. I become so vulnerable and I just kind of let others decide for me for a while.
We just become a passenger, don't we?
Yeah, and just different medication after different medication. I mean the list of medication that I've been in and different combinations of medication. It's absolutely, absolutely absurd. I mean, I was the type of patient that was still coming back. I don't know. I was just so desperate for answers.
So, were these medications psychotropic drugs, like antidepressants and anti anxiety?
Antidepressants. Yes, mostly antidepressants. If this didn't work, we'd try the next one. We try the next one and each one of them with their own side effects. But it just made matters worse for me, at that time.
So then how did your symptoms then progress, did you start to get additional symptoms or did the symptoms worsen?
Absolutely, yeah. So by the by the fall of 2018, so it was, like, 19 months, I felt like it was like a domino effect, so all these exhaustion fatigue that I had in my head, basically becoming all of my body, my whole body. My mornings started to become very, very hard. I'd become very isolated. So yeah, like 10 months into it. But I was still in that approach with the doctors. So the next thing that I tried was, they call it a transcranial magnetic stimulation for depression, so it's like a treatment with a device. They try to activate it. It feels like a woodpecker. For 18 minutes and 30 seconds a day, for 36 days. And that was the next thing. It didn't help in any way or shape or form.
Did any of these treatments at least help you with how you were feeling or coping with the illness?
No, no, and some of them actually even made me have some very dark thoughts that it was totally not me. I mean I didn't act on any of them, but I could feel that it's the side effects of the medication.
It seems strange that some antidepressant medications can have suicidal ideations as a side effect because you would think that's the great thing that it would be seeking to prevent, so yeah. It seems like a very bizarre sort of side effect. So what happens next? I mean, there you're approaching a year being ill and looks like you've had woodpeckers at your head, and all the medications they could find and still no improvement.
No answer. And actually there was one thing that really laid heavy on me. It's what one Doctor said that was part of that outpatient facility program, and he said to me, "You know that you'll never be the same again, right?" And that was something that I carry with me for at least the next two 2 1/2 years because I grieve my own self so much and someone I don't know, that's something that, even if you think it, you should not say it, well, to a patient. So, slowly, yes, I was becoming more severe and my therapist at the time, slowly, she recommended.. even she saw, that there is not that much to work with me and she recommended to change the doctor, and try new tests. And then from that point she recommended some compound pharmacy type of medication. Slowly lead me to no improvement, but, through that, lead me to a particular type of community and support group that people from there guide me a little bit into other directions to find answers in my second year.
Right, so what happened? Tell us about that.
So in my second year I start to. I don't know, somehow be able to advocate a little bit more for myself, like not being from US, I didn't even know the system, so that's why I kind of moved along with with how doctors recommend because I thought that's what patients do. We just listen to what Doctor says and we will be all better. So my second year when I finally was able to dig a little bit and advocate for me, I found an alternative medicine type of a clinic, where it just seems that they work with me and they were believing me, which is sometimes all we need. It was very expensive like things are, and they were willing just to look a little bit more outside the box for me, different type of testing and month after month, based off the test, it was like a puzzle. We've got to some possible environmental type of a thing that might have caused something, so in the form of mold, mold toxicity. I wanna just take and run with it. It is like we have an answer which it was very weird because nobody else in my house was sick. It was nothing visible as mold. We did find it once we dig a little bit more so for a while I thought fixing that would fix everything.
Well, can you tell me a little bit more about it? I mean, I guess, 2 questions I have is first, how did they diagnose that? What was the evidence for this diagnosis? So how did it come to this? And these are doctors, right? How did these doctors come up with this? And then the second thing is where did you find the mold?
The test that most alternative medicine practitioners use, it's a urine test for toxicity, most of them are even using glutathione in a cream form, or pills to provoke a little bit toxin release and then this, uh, it's a particular lab that does this and it's pretty new, so that's why it's still a little bit into acceptance by the mainstream doctors, so it's a mold test and it shows like 13 different types of mold and the levels. Of course, this is like it's very hard to work with this, because if you look into the relationship with the environment- you can test yourself and then you can test the environment- but testing the environment is not very well regulated here in the US. So you get these results, but you don't have as much of a mainly approved range of what's normal. So my results show, being very high levels of mold and then for the next while, quite a while, I thought that that's what I have to take care of, and I saw these people that deal with this and suffer from this. The only problem in my case was that I was not reactive to anything, so it's almost like not having anything to work with because that house was what made me sick, but moving 'cause we even moved because of it, no environment made a change into my symptoms. The house where we were living at the time, we did eventually found the mold. It was under the top in our case, and it was in a bedroom wall which was where the headboard was and the headboard was glued, not glued but stick to the walls. We never could've seen it, but it was not invisible. So it's very hard to accept that such a small thing affect, and especially not seeing a change moving along, it was very hard to accept. But that became my new reality. This is it, and now we have a way out, which was not the case.
Alright. So you see, then now you've got evidence that you've got mold toxicity, you're thinking OK, I even found the mold, but nobody else in the house is sick, right? And then you move house. And it doesn't get any better.
It doesn't become any better. We left so much behind and before we moved away, we spent more money into testing. We left basically almost all furniture behind because that for us and just fresh start then and my husband was actually so involved into this, because he felt that now it's something that is so manly for him to do that he can fix. So he helps me in some way so he was very, very supportive in this matter. so we moved in a matter of two months and then on the other side on our treatment, Usually with something like that, basically the treatment is heavily, heavily on the detox part. So stuff from dry brushing, infrared sauna. I bought one of those portable infrared saunas. I guess people can go into all sorts of juicing and coffee enemas, anything. The problem is sometimes you do a little bit too much, even on some potentially good things. No, I become very weak, very fast and it's all these binders that you take and these type of binder supplements is something that you have to take, so many holds before and after you eat from other supplements. So you become so consumed into all of this. So from all the treatments that I did most of them didn't help in any way, but the detox ones, actually, some of them made me way, way worse. I went even further into thinking this is the solution to my problems. I traveled 1600 miles away which is 3400 kilometers to a totally, like, another state here in the USA to a specific clinic that are dealing with, well actually they advertise it as dealing with lyme and mold toxicity and, they even have chronic fatigue and fibromyalgia on their website. So I accessed a treatment there that cost me over $20,000 which consists of three weeks of IV's of 6 hours a day, five days a week, of different IV's.
And what's in these IV's?
Well, I did some vitamin C. It was glutathione for sure and then some of them were mixed that I didn't.. it wasn't set on protocol. I didn't look into all of them. And then it was some ozone therapy as well, which is when they remove the blood and then they mix it with oxygen and then they put it back on. Uhm, that particular one was the only one that I felt just a tiny little bit of something. A little bit of something.
But I mean you must be so scared, yeah? I mean, like you got this mold toxicity, and I mean the 1st doctor didn't help you. What did the doctors say? After all the treatments for the first doctors, when it didn't work, what did they say?
Well, the first clinic I told them that I relaxed. I want to do this treatment which is more intense. I'll go out of state, you know, they just let me go 'cause they didn't offer such an intensive type of treatment here. And then after I did that treatment in another state, which was very intense, I still worked with that doctor for quite a while. And the thing that sometimes is a little bit weird with mold toxicity is that some of the doctors, they want you to test your home with a particular type of a test, which gives a particular score. The test that is more reliable for this is like a dust- a dust test- well, a lot of times when you don't improve as you should, they are like, "well, you're not in the ideal environment." Of course you do not get better because your house is not at the level of two, which is something impossible in that scale. So it's like people never win in any, in any way. So yeah, in my case was like, well the house you live now, which is the new one, is still not ideal.
It sounded like you really should have moved to the International Space Station.
I don't know. That was my only logic that I still had because I was in all these communities and I saw all these people. I mean there are people that moved in the middle of Arizona, and somehow, sometimes, you know, people react differently, but for me not being reactive to any? This didn't make too much sense, becuase where do I move? I have to live somewhere.
I mean, you got rid of all your furniture, you moved and you spend all this..
money on treatments and you lost your books. But I mean, how much money did you spend on all this?
Over $50,000 for sure. At this point we already had to declare bankruptcy, which is just a different stressor for me. At this point, I had to quit my job completely because after I was on short term disability for a while, I had to go back and I tried again for like half a year and then I just had to leave my job completely. One of the reason was I had to leave anyhow, but me not trying to work it out into another type of medical leave was that for me to access all these treatments I had to cash my retirement fund that I had. So all ends with that. And the other thing that I had to do to do that treatment, we did a go fund me campaign for family and friends to help. So with that my story becomes public which is not.. there's no shame into being sick, of course, but how do you explain all of this to someone you know? It's not something that a lot of people can relate to, so we did the best we could, and everybody was so helpful. My family from Europe. But with your story being public, it comes a lot of explanation to do all the time, you know, because everybody wants to check on you and unfortunately, I do not have the answers that I wanted like I wanted to get better for me, but even for all the people that support me in this.
And so I mean, obviously some kind of alarm bells are going off because you were saying, I heard you say it twice now, that it just didn't make sense because you weren't getting.. you were so triggered by them. Let's suppose that mold and, you know, all these treatments didn't work, so what's going on in your head then? I mean if you were you thinking it is mold then you just kinda get over it? Or are you thinking it's maybe something else?
Yeah, so we're here. We're getting into September 2019 so almost 2 years into my illness, where I went to another family doctor as a second opinion. And that's when I officially got a diagnosis of chronic fatigue syndrome. Uhm, basically it didn't take long when he read my whole history, and you know, everything that happened the previous two years. It's like, nothing else to offer, they just put this diagnosis and sent me home with, like, 2 pages from Web MD where it briefly describes CFS. That's the first time that I heard about CFS, like for me, like being in that category and I asked him, "what do I do with this?" and they just said that "I guess you can come back if you get worse" or something like that. And then that's when I slowly realized that maybe in all this community and this mindset that this is the root cause and I have to work on this environmental aspect, I realized that actually what mattered the most for my recovery whenever I find my way is like the symptoms that I have. So like, the fatigue was so, so crushing that I said, well, I am more into the chronic fatigue community, I feel better there, even though this might have been, like, what got me to these symptoms. So that's when I first, somehow, find out and accept that there is a component that is in my head, per se. So a lot of people with sensitivities to mold or even chemical sensitivities I start hearing people talking about brain training at this point. Uhm, which maybe was not something that I would've paid attention the previous year or the year after I was keep searching everywhere into someone, finding a solution for me. So with mold, I heard some doctors, even some of the best in the US, sometimes they did not take a patient until they work with the bridging program, just to ease a little bit those sensitivities, because they couldn't really work with any type of treatment.
OK, so now you are making quite a shift there, identifying with the CFS and you're not being told about any treatments. But you do come across some idea of brain training for the mold toxicity and I mean, tell me, what were your symptoms? Like when they were at the very worst? I mean, what was that like?
Yeah, so at my really worst, I was basically bed bound, let's say 20 to 22 hours a day. So I had weeks time when I was in bed. I had around 14-15 months where I was housebound. When the pandemic hit that everybody was isolated, it was no news to me, being isolated. So the fatigue was so crushing that sometimes I felt it to my bone. I could not describe it to doctors. I could not describe it, if it's fatigue or it's pain. Like I feel like the fatigue was so deep, that It almost feels like pain, but I start having a lot of pain which was not a problem from the beginning. The pain I cannot really describe- it was all over the body and I think that it got more intense even with all those detox protocols that I did.
And then I developed some new symptoms like hot flashes, in which hot flashes and fatigue, it's not a good combo. And a little bit of sensitivity to light and sound, but not too drastic. To heat, sound, and from my eyes but nothing too drastic. And what was the hardest for me is that I could not see any type of patterns. Like if I do this, it's better or if I do this, it's better. Or with diet, you know, people have such incredible results just removing sugar or removing gluten, and it was hard to stick with anything, when nothing seemed to shift in any way. So this is the time where I even watched some of your videos, and other brain training and I decided to go with a different brain training in 2019. And yeah, another disappointment on the book. I did my best to engage into that particular technique, and what I had to do, I just couldn't. I mean I'm very determined, but I just could not. I could not stick with at all.
But why do you think you couldn't stick with it?
Well, it relied heavily on visualization, which at my worst was very hard to find those resources in me. You have to do it a lot. A lot. But somehow I knew people get. Better, it's just. It's just not for me. So it was very disappointing. It was very disappointing. Until this point I was just going from one thing to another to another and I really got at this point that I just did not know where to turn anymore. I mean, I felt so much loss and so fast that I didn't even have time to cope with it all and and feeling so sick all the time and losing my body in some ways cos my body changed so much from all this medication that they put on me. So my body, my job, the finances, our house. And it felt like I lost my whole identity, at this point.
It's shocking, shocking, shocking experiences. And then, where do you stand? I mean, you must be thinking, well, why didn't that brain training work?
Yeah, it's like what what? What did I do? What did I do wrong on this one?
What did I do wrong, yeah. So where to from there? I mean, at what point does one give up? I mean, what were you thinking is your future here and what is your husband and family, I mean, what they're saying?
My husband was very stressed. In some ways I try to protect him and not talk about all of this with him. 'cause one of us had to provide here, to go to work and provides for us. I had great support from my parents, they both.. my dad lives with us, but then my mom came. It was the second time she came and basically took care of me. And it was so hard for them 'cause they don't speak the language here, and they don't understand the system, and they don't know what's happened with me. It's not like I was even in the shape for them to take me to Europe and try to figure out there. Very, very difficult. And then another decision that I had to pick at this point, financially, was already so hard, so I had to apply for disability or at least try here in the US, which was another stressor that I had to deal with at this time. It was just, it was just survival. At this point, it was another integrative medicine involved, and we just jump from using all these binders and pills, forget those, let's try these high dose antivirals.
So we're moving now from the mold toxicity to antiviral. Like to a different causal idea, right?
Yeah, so we try antiviral. After that, uhm, it was something to inhale. Hydro.. I forgot the name. Uhm, that didn't do anything, and from the antiviral we moved to these anti parasite, some sort of medicine. Nothing.
Did they find any evidence of a viral infection or for parasitic infection?
Yes, there were some viruses. I'll tell you the truth, I got so tired to keep up with all of this, so a lot of times I didn't look that much into the test, but the information markers were very high as well.
And what about parasites? What parasites?
I'm not aware of what it was, but I guess you know they have to have some sort of, you know, justification and diagnosis go-to to try that and I remember at this point that I got very low mentally as well and this doctor shows an integrated medicine doctor, she had a specialty for mold as well, so she was good in her field. And she saw me, that I was in such a bad shape mentally already and she said, you know, Alexandra, all I can prescribe to you is some chemicals. Meaning, what do you want from me as a doctor? All that I can give you is basically one type of form of pills. And at that time it was very hard because if I have half an hour with the doctor, let me just load all my problems to you, but later on, I could see that she had a point, like some other things had to change, than for me just going towards her for help. So this is the year of 2020 already, so it was summer, I changed to another doctor, and this is a pretty well known doctor here in the Midwest, so, It was a less affluent when I said I have to to trust him with what he does, and it was a shift in me, where I have to stop researching. I got so tired. I cannot.. like for how much he's charging me like I cannot try to look into what he does. I said, that's it? So I think that somehow helped me mentally, so starting in June 2020, I started working with this doctor and he had a different approach, I mean..
So what what is he treating? Was he treating mold toxicity? Was he treating parasites? Viral? Or was he treating CFS?
Mold. I don't even think this doctor believed in CFS all the way, or even in my my approach in what I did. I just had to take what he can offer, and that was not the whole picture. So by July of 2020, I counted, It was 42 different types of medication and drugs and pinchers. This is not 42 pills. It's not 42 pills. This is just 42 different kinds. It was quite a while.
So more pills than that?
But if you take it more than once a day or multiple pills..
Yeah, but somehow, I was the type of person that, I was so desperate to get better that I was not afraid to, like treatment wise ate least, to just go into feeling way worse than before. Maybe, maybe something will work like, even if a treatment made me worse, I still look at it as a some sort of a shift, 'cause if nothing changed, I feel it didn't give us anything to try to solve, like a puzzle.
Yeah, it's one more thing that didn't work. At least that's something to cross off the list. So, then, any more doctors after that or what What happens next? When do things turn around? Because this is a harrowing journey, right? Harrowing journey.
I know, I know, yes, yes. It was, it was a lot. I don't know, but somehow I just pushed through and by September 2020 I finally somehow started accepting more about, you know, this is chronic fatigue syndrome and I started seeing recovery stories, and I just went all in into it and just see that this possibility exists. That people do get better. And then, somehow, I remembered from the previous year, that I looked into ANS Rewire and then I read more, that, you know, you made it specifically designed for CFS. So it was time to give it another try, with hesitation, but give another try to this type of approach on top of what the doctor does. I said, he will do his thing and I will just do mine.
So, but you tried a brain training approach. Do you think ANS Rewire was a brain training as well, and so, if so, why try again? You know what I mean? What is it your thinking?
Yes, I knew it was brain training. I knew quite a few of them by now. In different communities, people, you know, share. You know what they tried. I think that was the aspect that I that I saw is, like, this is specifically for CFS, right? And that's why I went with it, because sometimes if something is so general and promise too many things for too many things, it might not work. So that's what you attract me to go with it.
So then, you go into the ANS Rewire program and, I mean, was it what you expected? I mean, how does that compare to the brain training programs that you've looked at? I mean, was it similar? Was it very different or what was the experience here?
Yeah, so comparing with the other one, I could see right away that it was different in the way it was delivered. The one that I did, they do some sort of seminars in person, so the program was very chopped. It was just different presentations that they did and they just put it all together, and it didn't have like a very good flow, at least for my liking. And it was actually recommended to do it in a matter of four days, 'cause they do this seminars in person. And that's the structure of that. So if you get home, they kind of want to somehow simulate the same, but it was like 15 hours of content in the previous program. To do it took me a week. I couldn't. But it was still too much. So that was such a difference in ANS Rewire, that I just had a bite size, how I like to call it, of information. I went into the program, willing to do anything. I mean, I don't know. People have different mindsets when they hit rock bottom, but I was willing to do anything. Like, I was saying if someone tells me to eat cardboard for a year, If it's any promise at the end, you know, I might just do it. And yeah, I started working with it. Right away I found a few other people that start their recovering with it. So I didn't have anybody that did it, so we kind of started together. So we created a support system outside of the main social media platform, which was very good. So I was just around the people that believe in recovery, and they took a similar approach to it, and they were really committed too to the process. So that's very good that I always had that accountability with others along the way. It was..
But I mean, like, you're talking about a program now. You know you felt overwhelmed by the 1st program, which was like 15 hours, and now we're looking at a program that is quite bigger.
I do not know. I do not know how big, I did not know how many lessons there were, either. So better not knowing it all.
But did that.. what was that experience like for you? I mean, was that overwhelming? Did you find that was stressful?
I mean, also, like, it's not just about brain training, right? Did you start to do a lot of other different things?
The thing that I resonate the most is I remember a little bit how I was before I got sick so I was very organized, I was being on personal development, time management, differed my things and I think that's why I felt so lost in illness, because I do not know where, how, I did not have a structure. I didn't have a predictability in any shape or way, so that was the first thing that you gave me. New day, new lesson. Let's go. And I start a little bit too strong. I have to say, like, one lesson a day, so I finished the program in five weeks. Which, then, I realize that it's no, no, no rush into anything. And I started watching the lesson, I started working with the program following the action plan. And you know by this period in my illness, some of the things seemed familiar, you heard them in quite a few places, but it's still a little bit over process from just knowing them and start applying them and be very consistent with them. So that's what started to happen. And then, I cannot lie, at one point it did become a just a little bit overwhelming. But it didn't last long. At one point, the puzzle of my new habits and the new things that I try to implement, it started to fall into place, and we worked with them.
OK, so how did you deal with that, when you started to feel a little bit overwhelmed? How did you deal with that?
Well, you know, I realize that, you know, like even healthy people, they wrote books about changing one habit, and we had to change so many at once. But a healthy person, if they’re like “I won't to go to the gym I'm OK the way it is”, the alternative is that they are still feeling good. I didn't have that to run to, so the illness in itself was hard the way it is so, It was just a different type of difficulty. So I might try it for now and see and see where it leads me. It was just not another option that it was, in any way, more comfortable, so I just went with it. I did have a little bit of the advice of someone that recovered with ANS, and it kind of prepared me, so to say that, you know, just be patient, just a stay with it. Just do your best. Don't give up. So I was prepared for this to take a while.
And that's why we deliver it in the way that we do. We say, hey, you can do this in your own pace. Right? You don't have to do everything perfect at every step. Maybe just try and do a part of 1 aspect, 'cause it's a multilateral approach. So it's brain training, it's, you know, so many different physical strategies and sometimes maybe working with other practitioners. And it's like, well, if you can't do it now, maybe come back to it later. I mean, did you find that your recovery action plan built up like that? I mean, did you start and did you engage with any other health care professionals?
So for the first few months, it was just this functional medicine doctor that I see every two months and just stayed with that. I think, three months after I started with ANS Rewire, I started acupuncture. I did it, I think, weekly for four months, I did weekly and then we start doing it biweekly. I was doing chiropractor.
Was it helping?
Well, I think to some degree it did. I did chiropractor as well. A lot of that, a lot of session, like over 60 sessions in a year. So chiropractor, acupuncture, functional medicine doctor, these were happening kind of the same time that I was doing the program. Uh, so I didn't want to rock the boat in anyway. I didn't want to change much as I was doing the program, but at the same time I did plenty of treatments before, so I saw that in itself didn't get me better, so I don't know exactly what ways it helped, but if they did, it probably was not more than 20% of the whole end result.
Were you worried about doing the brain training? 'Cause you tried to do brain training before and you found you couldn't do it? So were you thinking, you know, I mean, how are you going to go with this other new brain training? I mean, is it gonna be any different, right?
It's so interesting and kind of backwards, but when the first program didn't work for me, the idea of neuroplasticity and certain books, that stick with me. That stick with me, that it is in this part of recovery, I just did not find the way of how to apply this. So I believed in it, and by this time, I was surrendering, to like, I have to take some sort of responsibility to get better, which are some words that I wouldn't accept to hear in the first year of being sick. Like, what do you mean, is this my fault? Do I put this on my shoulder with everything else? So I was just In a different headspace that, Oh OK, like I guess there's some things I can do along the way. So, with the with the program, slowly, I remember when we were saying, you know, talking even about sleep that everything starts the moment you wake up. My first thing that I was able to implement Is to get outside a little bit in the morning, and even a few steps and it just became my lifeline. You know, it just becomes a new focus, that every day, I do that, and that's checked, then it becomes my little success for the day, you know.
What are different approach. Isn't it amazing how these little things that have an impact 'cause your whole mindset is critical when you're dealing with a crisis, right? Any crisis.
If we feel completely overwhelmed and just focusing on the actual problem, how do we cope? How do we do anything? Was that an important part of the program? tThat mental coaching side of it?
It was it was so important. I did not even realize until later in the lessons how much the illness changed me from what I was before I've been sick. I forgot to say that In this time I was doing therapy as well. I found a new therapist that I worked with for a whole year. And one aspect that was very ingrained in me, I had so many mental distortion, it was, you know, me alone with my mind for too long over time, anybody, you know, with their own mind in illness for too long, it just, it takes you places for a little bit. So to sort all that out, and change the mindset, and really go for any type of little gain, it was such a shift, like, before the program, I think I was at the point where I could take a shower a day. So that became my one thing, like, every morning I could wake up, I see that towel to that one point I was able to do a shower, and that became the one thing. Then slowly, it was the lesson that add up to that. Then slowly, that becoming to those few steps, you know.
And pulling from there. So how long was it until you had, like, a significant shift in your well being with the program? And what, in your mind, did you put that down to at the time?
My shift with the program was pretty slow. That's kind of how, how what I was hoping would happen. I said if even if 5% a month, I will take it, you know, even if it takes a year to get to 80 percent and another six months to 100, I will take it, and somehow that's exactly how it happened. So it was just 5% a month, if that. So small, small changes. I think in the beginning it was a little bit more mentally, it's like oh my God, I cannot believe I have a way to do it. I have a support system, I have some sort of a plan, so I think for a while it created momentum just on that. And then, slowly, I start applying the rewire. I started working with. that, and that became the main key component into seeing changes, into seeing clearly. It took me a while, I was listening to all these videos of yours and I really like it. like, ugh huh, yeah, I agree, but you know how they say, knowledge is not everything, applied knowledge.. so, and then it's like..
You gotta do it. You gotta do it.
Something is missing, 'cause I started the program the second time and then because I had a support system and the people were trying to rehearse how, you know, how they do it and we share, I said, what am I doing? I'm not doing the most important thing. So the 1st 2 two months, you know, it was not even there, you know, what I had to do the most. I had to understand, you know, my triggers. Like, my illness, everybody thinks that, you know, their journey is unique. But, because I did not have these ups and downs, it took your program and your approach for me to understand where these triggers actually are, even though you feel flat all the time. So once I got a little bit of a hang into that, then things started to shift.
And then what are you thinking then?
Well, you know momentum started to build, and evaluate every month, and as much as you can, put it on paper, it becomes very uplifting. And then for a while, all these wonderful recovery stories, they were there for the bad days, you know, that was the motivation that kept going. But after a while, I did not need them anymore because I realized that I am working into building my own story.
It's really empowering, isn't it? Now you know, leaf in the wind, hoping something will be done to you to fix you, but you are doing it. Like, I didn't do it, but you did it, right? That must be feeling pretty cool.
It felt quite amazing. Just, clearly, getting outside into the world a little bit and for a while, this is your whole universe. And even people you engage with, these people that deal with the same thing, because they understand you and they validate just to go. You know, I remember it was three months into the program and I had a little bit of cabin fever in the house. Uhm, it becomes, you know, a little bit repetitive and I told my husband let's go for the weekend and I remember going for a hotel. That was impossible before, it's like first of all, it's like 2 bags of supplements. You know, like it was a whole routine and I remember going, and It just felt so good. I mean, not physically, mentally felt good. Physically, I could still feel a little bit the effect of that, but by by this time, I was not scared of the symptoms anymore. They were there, but I was not scared of them.
So let me ask, you how did that work with your friends? I mean, there's what, three people together doing the program, is it?
Oh, there were, like 6 of us.
OK, now I would pretty much be able to guarantee that everyone is having a different experience at a different pace, right? And so you guys are talking about how you're doing things, what you're doing, Did you see people do a bit of faster than you, slower than you, and how did this impact each other?
We went on different stages, like two of the ladies, they were doing the program for the second time. Some started after me, so everybody was in their own recovery stage and as I create the group, I made it very clear, like I said, take advantage of this group. Use this group in your advantage, meaning, whatever you want to be accountable for, or you want to do further, we just talk here. And so we used that group a lot that way. Everybody was very, very encouraging for each other and truly, truly happy for each other and it was my second time to a lesson or something, we kinda started the lessons from the beginning together and It was very wonderful. Of course, it's always a little bit difficult how you talk with others. They are not quite at the same stage in recovery. So it's always like that, consideration, and you know, kindness.
So then I guess, you keep going alright. It sounds like it's a pretty steady process. It's not like an overnight thing. It's not ups and downs. I mean, did you have big setbacks along the way? Or was it kind of a straight line over 14 months? 01:08:05 Dan
Yes, it was a pretty straight line. So like no crashes for more than a day.
And so, what were the health professionals saying around you like you had your integrative doctor, you had your psychotherapist, you had acupuncture. I mean all these people, well, perhaps they hadn't had, you know, seen the big results with you and then suddenly you are seeing results, I mean, what are they saying?
I kept it to myself a lot. I feel like, more people that I try to explain, sometimes people are set in their own ways. I think I don't want to talk too much about it until I am completely better just so nobody cuts my wings. You know, like sometimes you're so vulnerable. I just didn't want to be in that. But my my therapist was the only one that, she was right there with me. Oh my goodness, I was like, look at this let's let's look at this together. Look at, you know, the symptom tracker she was treating me along the way.
The sentiment activity graph.
Yeah, yes, and you know, who knows if she really understood or supported that, but she was good enough of a professional to just like, "OK." Because she at, one point, she said, in regards with the pain, she worked a lot with chronic patients. She said, "well, you know you might you might have this for the rest of your life." No, that's not acceptable. So the only doctor I saw this time is the functional medicine doctor and well, I told him a little bit into me engaging in through doing certain things, but I could not see any deceptiveness from him and I don't want to talk too much because I was talking with my own money. It was somewhere around $100 every additional 10 minutes, so better keeping the stories to myself. Yes he was very, very expensive and at maybe one point this stuff would have hurt me, but I just kind of found my direction and went with it because even the last time when I saw him, I told him actually, I use this, you know neuroplasticity type of approach as part of my recovery, and he was telling me something about a supplement. So his idea of touching neuroplasticity was through a pill. I said, nevermind.
Fair enough. So I mean at what stage, do you then start tapering off some of these different treatments? At what stage in your recovery did you say, "this is not helping me anymore?"
Yes, I did it very slowly. The doctor, also because he was going off what I was reporting, so he was, you know, tapering down or something as well. And I was able to go on vacation at seven months into recovery. I was maybe about 70% at that time, and you know, somehow I did not.. I took my supplements with me, but that was at a stage, where I stopped some of them, or reducing some doses.
With 42 supplements and medications we may not go through all of them.
We will need another hour. I'm telling you, I know more than I ever wanted to know about them.
You know, the program, obviously, besides brain training, it talks obviously about diet, it talks about treatments like acupunctures, working with doctors and so on. But it also talks about training the nervous system with physical activity. And I'm wondering, I mean, how important do you think that part of your recovery journey was?
It was so important, those lessons, I really, really watched the most because I really had to understand how to build a relationship with movement, so I was an athlete when I was younger. I practice track and field. I ran a full marathon 11 years ago. It was on my bucket list. I was working on my bucket list in my twenties. So my approach to exercise before I got sick, it was intense cardio that I liked. So when I was not able to do that anymore, in recovery, then I just might as well not do anything. So I was all or nothing. So, being sick, I tried to rest my way out of this illness and it didn't really work out, and I had to understand that every little thing counts. You know, I remember even you doing, you know, even this counts. It's like when you talked about the connection with like our lymphatic system, which can affect, you know, even the pain. So I started with maybe little movement. Just moving my arms or something like that, and just build from that.
I mean what about the fear around this, I mean it's kind of scary 'cause often it makes it feel worse when you do too much, right? And also what about the older fear around the mold side of things? I mean, was that still a big part of your concerns that you might get exposed to mold, or the mold is not coming out of your body or not being detoxed?
With the mold, again I was not reactive more into one environment or the other. The doctor was already doing some sort of treatment in this direction and I did not look more into it. I really didn't. With the movement and the exercise, I think it's a little bit of a particular situation because I did not have extremely bad post exertion malaise. In some ways I felt, it was not too much lower to go to the way it was, but I did not have that much. I mean it was hard to do it, and of course I felt a little bit worse after, but they didn't create you know, that much of a fear.
I think that's the character thing is when you're that low, you don't have those ups and downs. I think when people are functioning 50-60%, they do something, suddenly go down to 30 and they're like, oh, it's post exertional, but when you're like flatlining around the 10% mark, how much longer can you go, right?
You know, we always sometimes we look at the others. One of my support system she had years of time when for a few months she felt better, through the years, and to me I was looking "Oh my God, how is it to have just just a few days that I have a clear mind and just kind of, you know, get a little bit of a boost." You know, I thought, but at the same time she had her own challenges because it created a lot of doubt. You know, like whatever you tried like, well, why is this just one of those periods? So for me when it got better, I didn't doubt it as much that this doesn't last, if that makes sense.
One of the things that seems to really come through in how you use the ANS Rewire program, some of the techniques, but in your whole journey, including how you approach physical activity, is there a whole theme of, you can't do it sometimes. And if you don't feel up to it, you didn't do it. But you kind of did it a little bit. And you felt good about doing something a little bit, and it seems like a really powerful way of engaging and building positive habits. I mean, was this a conscious decision or did this sort of come together from the program? Or how did this evolve?
It was very conscious and very, very well thought of. I feel sometimes we're so subjective into everything with the illness, and we just don't have a clear picture of what is enough to do, or how it was when we were healthy. So for me, I measured in minutes, or I measure the steps that I did. And and it's not for everybody, but for me it works. It works very, very, very well.
I get the sense that you measured, but you didn't necessarily stick to trying to reproduce it. See, that's what I find so interesting. 'Cause when you didn't feel well, or you had symptoms worsening and then you did less, or if you didn't feel up for it, I know I really loved in all of your talking about you didn't beat yourself up, or feel upset or disappointed, in fact, you just felt good, so I can't go for a 10 minute walk to there. But I can go for 30 second walk.
Yes, yes because I wanted to find that little thing that I can celebrate. You know, this was getting back my health, it becomes my full time job. Like I couldn't do much else and nothing else makes sense until I had it. So I was very focused on these small, small gains. I remember when I was not well until after four or five PM sometimes, in the beginning, and then I was like, it's OK I need 55 minutes in bed and five minutes I am out and then maybe my goal was 10 minutes, but I come back, I stay 55 minutes and then go back again. So something shifted there, into how I was thinking about this, 'cause I couldn't be like I cannot believe I cannot do this, and now I'm back in bed, it's like, now I have to do this and then I do a little bit of that.
Yeah, yeah progress, not perfection. Look, you know you said you had dispirited some anxiety, I guess, leading up to your illness. I'm wondering, you know, in the program we talk about the life balance wheel, we talk about personality aspects, you know, aspects of our personality and cognitive distortions, how we engage with life in the world, and I'm wondering, as you reflect now, why do you think you became ill in the 1st place? I mean, do you still think it was mold? Or do you think it was something else? And that's the first part of the question, and the second part of the question is, how has this whole experience changed you now?
Well, I try to analyze a lot what happened and I feel that some components of that, I was like I just don't know and I might never know, and I have to be OK with that. I think the environmental exposure to the mold, I think it was probably just the last drop. That's why in some ways just attacking that problem didn't really make a shift. I had some anxiety through the years, from like becoming a parent and a working mom and so that might lead a little bit into this. And just having a job that, it was not really fulfillment, and not feeling appreciated, that I think I had to deal with that as well with some financial difficulty. I think he was just a little bit of some..
Yes, yes. So I cannot pinpoint something bigger and at one point, just let it go, because sometimes I feel we can get stuck into like I cannot start until I have all of this figure out and you know, like, it's not the case, you just have to work with what you have, you know.
Just get on with life sometimes.
So in this quote, I forgot who said it, but it's it's not your fault you got sick, but it's your responsibility to get better. So, I try to go with that.
And, I mean, how are you different now? How do you think you're different engaging in life now?
Well, you remember when I told you about that doctor that said, you'll never be the same again, you know that. I actually took three years, you know, in the illness to get to this point to say, actually, he's right, he's right. I mean this experience, trauma in some ways, it just leaves a scar, and you will never be the same and that's OK. And it was some griefing about the old me, 'cause, well, what's wrong with that? So yeah, the doctor was right. I will never be the same, but I had to understand that different is not worse, you know. So it changed me into looking at life. Live life a little bit slower. Especially here in US, it's just a different rhythm. And it's too much stimulation that we can have. Social media, I was out of social media for a whole as I recovered. I did not even understand how much that was not helping until I was off for a few months. So I can see that. I don't wanna spread myself so thin in so many directions. I can look into my achiever that I had before and really, really see, you know, who am I trying to impress at the end of the day?
Yeah, it's a humbling experience isn't that?
It's very, very, very humbling and I always thought that I have, you know, hopefully more than half a life in front of me. So from now on I will know how to talk and how to listen to someone that is chronically ill, you know? Something that I didn't know before. And I think that's a big gain, for sure.
What was the most amazing moment since your recovery that you just go, wow I can't believe I'm doing it. Was it in the Dominican Republic?
Yes, it was me traveling there. It was like 9-10 months after I started the program, and I traveled for over three weeks and it just seemed like, you know, a healthy person will do and dealing with traveling, and with layovers and with walking. It's just, I forgot how much beauty is in to the world. For a while, I felt so disconnected. You look at people laughing and talking and you come from such a dark place that it's you feel it's like I cannot believe that these people never knew, like, how it was. and where we come from. It was amazing. I love to travel so for me to be able to go. Then I did some traveling after even in the 11 months after I did the program or 12. I was saying I'm 97-98 because I still needed to do something big and travel to really see that I'll come back and everything is OK and I go business as usual.
Good for you, good for you. If you could give someone advice, someone who's currently got CFS, I mean, what would it be? What do you think you would say to them?
I would say that they have to believe that they will find their way back to full health. And they have to believe it, they have to advocate for themselves, and that people find their way to recovery in different ways. And I think we'd have to respect and celebrate whoever gets to full recovery. Each one of us are slightly different, and I feel that if something helped me, and I shared it with someone else, it's really.. you're not losing anything to, like, look into it. You know, like, we don't have game fees input into anything, but you might just find your way through someone inspiring you, and hoping you can get that. It's so important and at my worst I promised myself that I will get there and give hope to others and and help in any way, the way you do it too.
Well, we've done that today, Alexandra. And I thank you very much for doing that and bringing a your story of success and hope to the next generation of recoverers.
It's absolutely, absolutely my pleasure, Dan. Thank you very much.
Yeah, you're welcome, thank you.
What a wonderful story of recovery-I can relate to so much of what she is saying. I’m still on my journey (I got sick 22 years ago), but because of the ANS program which I started one year ago, I am well on my way to (hopefully), a full recovery, even at age 62! Thank you for this video.💖💖
Great to hear Karen – thanks for sharing.
I can so relate to Alexandra’s severe mental exhaustion and brain fog experience.
~ It’s disturbing to say the least.
Personally, I am at the point where I no longer have any lingering doubt that brain retraining is absolutely essential to recovery.
Best to you Alexandra – and as always -, thank you Dan!
This is so beautiful and gives hope. thank you!
I enjoyed this interview very much Dan. And much thanks to Alexandra who was able to tell about the history of her illness, all of her attempts to find help, what did and didn’t work for her and her recovery in a very detailed way. It was so helpful to hear. I also appreciated being able to hear her and read the transcript at the same time, since my concentration sometimes fails me with just one or the other. I loved how she described how she used the ANS program in a way that worked for her individually — zooming… Read more »
Glad it’s supporting you Bonnie.
Little steps – keep moving forward. 😉
Great story.I am just wondering how Alexandra coped with the common problems that life brings.As you sad in Ans rewire programm, Dan, we have to cope with problems and tasks in life like healthy people.
For me it is so difficult to focus in my health if I have lot to do beside…take care of my daughter, house etc. Perhaps if we are sick for so many years, we lost hope in recovery and we focus more on the thinks we can do for our children and try to push and carry to move foreward…but we are still suffering.
What I wanted to say it’ s that I am still in the ” push, push, crash” mode but how not to be if we are the only ones who can do thinks and we can’ t be replaced…After it is so hard to have a good routine and do every day the same program, the same mild movements, meditation if the day before we just needed to do something important for our children, so the next day we need just survive and lay in the bed…
Getting out of the push push crash cycle is key.
Keeping a careful diary for a period of time to help you identify WHAT activities may be causing you to crash is key – often it is not physical activities.