I'm starting to have doubts about what's going on here.
I don't even understand how she puts up with it. She's a saint.
The problem with some of these illnesses
is that the patients are frustrated because the family says,
"You look pretty normal."
Doesn't make sense to them. You look okay. You look fine.
They can be in a lot of pain, but they look well.
Sometimes, you get these big rifts,
if someone doesn't take someone seriously or thinks they're a hypochondriac.
It's hard to be happy and joyous when... you have a son
that looks literally like he's dying.
As the illness progresses, and as people don't get better,
people lose... their friends and family.
People don't have somebody who's supportive,
and when that breaks down, the whole family architecture...
falls apart.
That's the only thing that can break my heart is my family.
I can take anything, but that.
Okay.
TWELVE DIFFERENT DIAGNOSES
- Hey! - Hey!
- Mwah. - How are you?
- Oh, good. You smell good. - You too. How are you feeling?
- Like shit. - Oh, yeah?
Yes. Tired today, back aching, hard time breathing, but good mood.
- You know, so... - You look good.
- Thank you. - Yeah.
So do you. Whatever. Whatever.
Are you... Do you need any glutathione, or...
Yeah. Actually, I would love a glutathione injection.
- Okay. - Cause...
my liver has been...
not detoxing the way it's supposed to, and...
I didn't get one last week at the clinic, so,
okay.
Hi, baby.
She's going to inject me with glutathione,
which actually helps the body clean itself out with chemicals.
I should be producing it naturally, but my body doesn't produce it very well.
- Wait, don't do it till I exhale. - Okay.
I want to lay for a minute cause the last one I got straight up
and I thought I was going to throw up and faint so...
I have a very unusual...
situation.
- Do you want some water? - I brought some, yeah.
I've been through...
one thing after another, year after year, and it's one diagnoses to the next one.
I've been diagnosed with numerous autoimmune diseases, including,
Celiac disease, Hashimoto's, Raynaud's disease.
They found that my phospholipids are attacking my body
and my collagen complex,
which is connective tissue, is attacking my body.
I also was diagnosed with dystonia, which is a neurological disease,
and causes involuntary muscle contractions and breathing issues for me, personally.
I was also diagnosed with trigeminal neuralgia,
and, we believe there is some sort of disruption with my vagus nerve.
I also have found that I have a reactivated...
case of Epstein-Barr virus,
among a few other types of viruses which are in the herpes family.
I also was diagnosed... partially with possible current Lyme infection,
but we're still not sure about that. As well as a staph infection,
called MARCoNS disease, which is a multiple-antibiotic-resistant
staph infection that has housed itself in my sinus and nose area.
Thank you.
- Yeah. - Do you want to crawl in?
Yeah. Are you ready? Okay, let me turn it on.
Thanks.
I'll let you get in first.
Let's close our eyes...
Let our bodies sink...
into the chamber
and allowing the Earth or the chamber to hold us up.
I look very healthy, people comment on that quite a bit.
Early on in my journey of healing, I would show up in doctors' offices
or even the E.R and I'd be laughed out because my baseline health,
the way I look, I'm fit, so they just thought
I was a little bit crazy or something and didn't understand what was going on.
It's like... It's actually like a little retreat from everything.
But I'm, like, really suffering and really struggling day to day.
I feel like I'm just trying to survive right now.
Ooh, baby.
I feel high.
- Thanks, babe. - Always.
It's been extremely frustrating.
- You want a glass of bubbles? - Sure.
I think that, if I can figure out why this is happening, I'll get better.
- Cheers. - Here's to healing.
- Any movement. I feel a lot better. - Yeah.
Yeah.
I need a clear diagnosis.
Today was hard.
- Will you... can you plug these in? - Yeah.
In reality... In this reality of her sickness,
she's actually just trying to deal with pain.
You know, that's off the charts.
What happens to people like Bekah that are ill;
they get to a point where they're, like, "Oh, no one has anything for me."
And you find yourself, like, visiting a guy in a shed,
who's building strange, low-tech machinery.
We don't talk about it a whole lot because it's very controversial.
You know how a person, can break glass with the sound of their voice,
Like, if it hits the right frequency, like, glass explodes?
So it's all these DNA scientists. They somehow... figure out
the numerical frequency that a particular bug is vibrating on,
and, then, if you hit that frequency, they... pssh! in your body.
What are you feeling? What kind of sensations?
I feel an intense, like, shooting, throbbing reaction in my pussy.
You know, we do this stuff because... we have to for Bekah to survive.
Medical society has just abandoned us.
I hate untangling knots.
I'm getting better at it.
This is not plugged into anything.
- Yo, what should I use for the... - The stove?
- Yeah. - Yeah, this one.
- Do you want... Do you need help or... - Oh, it's still all janky, right?
Yeah. I can un-jank it now. Whoo-hoo.
I need to have someone around to help me because I'm so sick
and sometimes hard for me to function.
I feel like I'm gonna faint all of a sudden.
- You want some salt now? - Sure.
Since Jesse and I have been on mold avoidance,
we've been apart, like, a week out of a year, something like that.
I think it'll be hard to not... to not have him here.
I got a letter in the mail.
Had to read it like several times and get some friends to read it
and then I was like, oh, wow. You know, I have a free ride to Harvard.
I was just... I felt, like,
"wow, how did a guy like me get in," you know?
I got kicked out of every school. I don't even know grammar.
I don't even... My vocabulary is, like, waah!
It was right when we met, I got accepted. She was gonna move with me to Boston.
Of course, that didn't quite happen.
The problem is, now,
because of Bekah's health, it seems stupid to go.
Everything that used to seem important to me doesn't mean much, anymore.
I'm with someone I want to be with, and, you know, we're in this together.
I feel so sick right now.
Do you want to feel how inflamed my brain is?
Yeah.
Oh, I can really feel right here.
Looking back,
it's pretty crazy how we met and how we really needed each other.
Can I do anything?
Yeah.
You're doing good.
We've been together, everyday, through this
and you know, I've been her support...
system and her lover.
You're so talented.
So, I've been talking to Bekah's brother Nick about...
how he could help. He's going to come here,
and be with his sister, and support her.
But I feel like it's going to be hard for Bekah to...
depend on her brother in these ways.
Would you pull it? Pull it out.
I don't know what the brother/sister dynamic will be like.
It's definitely different than the boyfriend/girlfriend dynamic.
One of my biggest fears is, me leaving will trigger something with Bekah.
Until recently, Jamison was in an upswing.
It really wasn't... extreme,
but it was enough to be hopeful.
But he crashed dramatically after that.
How you doing?
I can tell you're super sensitive to light.
- This okay? - Yeah.
When backsliding starts happening,
it's often a feeling of we're at the mercy of this,
because, you know, nobody really knows what influenced it in the first place.
It's confusing.
If I had known about M.E. prior to getting the illness, there's no doubt
that I would have been skeptical about it and the people who have it.
I was, after all, a fitness instructor.
I've always been fond of using my body in that way.
Pushing it to the limit.
Jamison, he was so knowledgeable about exercise, nutrition, fitness.
The plan was to become a bootcamp business owner.
It was great to see him and his passion for it.
You almost don't recognize him.
It started as something I loved, and then it kind of turned into...
something I used to cope.
I was halfway through college. And I was...
going back to campus.
There was a car stopped on the freeway.
In my lane, and...
I didn't see it.
And there was a person inside that didn't make it out.
Yeah, they died. They died.
I remember reading an article about ME being connected with...
experiencing a trauma.
When you see that there's a link between a particular event that's upsetting
and the onset of a problem, you do wonder whether it's a direct translation
of an emotional conflict into a physical alteration in the body.
Someone is in a car accident or they get shot.
There's evidence that it affects the immune system, as shown in studies.
I think it's clear that he needs to see somebody
who... knows these illnesses.
Then we'll have you look at the green dot that's on the TV screen.
The dot's going to move to the side. I want you to follow it.
This just kills me.
I get involuntary muscle contractions.
I guess it's diagnosed as dystonia.
You are going to stand up on the foam.
And so, this...
when my head's doing that, it's doing it on its own.
Feels like my face is pulling to the right.
Then, I have a hard time getting my breath.
Okay. Last one is gonna be up to the ceiling and eyes closed.
I first noticed it ten years ago.
And then as the years went on it became more chronic and constant.
and it's still a mystery as to why that piece is happening.
So, in 2007, Star was starting to have symptoms that were very unusual.
As the years progressed, we went to different specialists.
Every specialist had us do something else within their specialty.
So if we went to somebody that was an ear-nose-throat specialist
because she couldn't breath well, they would have us do
an ear-nose-throat protocol.
She actually had a nasal surgery, a sinus lift, and that didn't help her.
We went to somebody that helped do a mold test on her,
and looked like she had an overgrowth of mold.
We got rid of the mold through the mold protocol.
She had a Candida overgrowth.
We did a Candida protocol and got rid of our Candida.
Sure enough, she was celiac,
and we eliminated all the gluten out of her diet.
She heard about a neuro-dentist that could help with the jaw;
something called dental distress is something that's unknown.
So we did the dental protocols with a neuro-dentist,
but she still was not healed.
Oh.
All right. Let me see it. So that was fun, right?
Yeah. Interesting. That's a new one.
- And you have received that test? - No. I've never done it.
That's a wonderful test 'cause it lets us very precisely quantify
what's going on with your vestibular system.
Star's primary issue is that she has the dystonia.
Dystonias are about people not being able to map out
where they are in the environment.
The harder your brain has to work to map out where you are in space,
the less bandwidth you have left over for doing things,
like shutting off unwanted movement.
So we assess all these different pathways by looking at balance.
We did vestibular head impulse testing, which allows us to map out
how the feedback from different parts of the inner ear move the eyes.
This is your stability.
This is you, eyes closed, head to the right.
That's head to the left.
Both have a healthy balance range, but what we don't like
is that this one going to the left is significantly worse.
This data shows us that your brain thinks you're farther to the right than you are.
And that's always a feeling of a pulling.
That's it. The pulling sensation. One of the things we'll have to do
with you the, more than anything, is get the optic-kinetic reflexes in balance?
So Elena's gonna be giving you an exercise that's going to involve you doing quick,
little head movement to activate that canal mechanism,
coupled with some optic-kinetic stimulus.
What we were doing here today was basically get those different visual
and vestibular reflexes working together again
and increase the bandwidth in that system.
From what I understand, it's a different kind of neurology
where they help people by using movement exercises
rather than drugs.
- Let me try something. - Can I turn the lights on?
No. It's fine. Just stare at some lines for a second.
- Yeah. - No lights at all? Okay. One more time.
It shows it back up?
When we work with a dystonia patient we'll work non-stop for a week or two,
and then we'll give them home exercises for a few weeks to a few months,
and then they're usually okay.
It's okay. We'll do it again.
Dr. Zielinski has been a blessing for me.
I am optimistic, especially now that we have more real answers.
I feel a calming.
- Do it again? - How was it?
- Not bad. - It didn't crank it?
- Felt like it got it back under control? - I feel calm..
Good.
It's giving hope; she could be feeling better.
Yeah, could you tell her that Kathleen called?
Awesome, thank you. Bye.
The specialists for this disease are in the major cities,
the nearest is the San Francisco Bay area, and that means a three-hour drive.
I'll check back with him and...
Anytime works.
Jamison was doing a lot of research online.
We're always waiting for the breakthrough... always.
Like many people with chronic fatigue syndrome,
I prefer to call it ME because people don't automatically become skeptical about
as they do with CFS.
Most doctors have no idea how to treat ME
because there hasn't been enough research done on the disease.
It's much easier to dismiss the disease.
Well, thank you all for coming and welcome
to our first community symposium on ME/CFS.
I do as much as I can to take the burden off my mom and my brother,
but they're still struggling... every day.
This is their life. This is their reality.
I'm on the phone a lot.
And I can't find anybody to give them the help that they need.
There's no telling how the progression of his health is gonna go.
And that's scary.
- Hi! - Hi, Mom.
So...
Jamison had put out I don't know how many e-mails, but many, many, many,
many e-mails to many, many specialists, and Dr. Gordon picked up the phone
and gave us a call.
We had a phone call with the doctor in Santa Rosa.
He's been dealing with chronic illnesses for at least 25 years.
Dr. Gordon can anticipate because of his years of experience,
possible scenarios that, would just be trial and error for our doctor here.
Super grateful that Dr. Gordon's able to get up here.
- Yeah. - Amazing.
I'm really a city person.
Or at least I have been up to this point.
I'm basically giving up whatever life I had in Boston.
But, I feel like this is what I need to do.
Turn right. Then you will arrive at your destination.
My main goal here... is to keep my sister alive.
You've arrived.
My only concerns are really... what's going on with Bekah
and whether I'll be mentally strong enough to take care of her.
Jesse.
- Hey. - Hey.
Is there anything I should be doing?
- No. - Just be yourself.
I like your hat.
Thanks. The best I could do.
What do you think about mine?
- It's nice. - His looks like a weird taco, right?
It's my taco hat.
Can I take a look, or is it too early?
- Yeah, take a look. Totally. - Thanks.
Yeah, you don't... You haven't even seen the lay of the land yet.
So these are all clothes we washed. We're just waiting to ozonate them.
I call it shower.
So, should I just, like,
basically hosemyself off in the bathtub?
Yeah. Sound good?
Yeah. Sounds like a plan.
And, yeah, I'll show you the details whenever we get to it.
Okay.
- You remember the MaxBlaster PRO? - I didn't know that it was called that.
Okay. But you remember the ozonator, right?
- So do you want to fit it on there? - Sure.
We have an ozone machine that we run a hose from the machine into the car
to sterilize are clothes or anything that I would... react too.
So put the hose in the car window.
I wish I had the science of this down, but ozone is a decontaminator.
Like it's a sterilizer basically.
So, for the...
shower...
- do you want to hose down? - I'm ready.
- I'll show you the process. - Okay.
Man, you're actually going to contaminate the bath.
So maybe, I'll get the hose and come back out to you.
You can hose off over here and we don't have to worry
about contaminating the tub.
What do you think? Talk to me.
It just doesn't feel right.
Yeah, I hear you.
There are a lot of daunting parts of showing up here.
All right, I'm going to give you a blast.
Scrub, scrub, man. Scrub.
You got like all kinds of toxins from nasty old, Boston.
Jesse's done a lot to set the stage here with getting structures up.
- A few more good showers... - Yeah.
...you'll be able to get in the van.
He has a background that I don't as a New Yorker, classical musician.
We come from different backgrounds.
Nick's totally green to this type of lifestyle.
He's starting from scratch, you know, he's a city kid.
and you know,
it's seeing other things that are just common to me.
Like...
don't even enter his thought waves.
Okay, so...
- So... - I can change now?
Yeah.
It's a stressful situation...
because of all the unknowns and all the things that have to be done.
So I'm a little nervous.
Why is the wild sack that you call a body falling apart?
How many desert skulls will there be in your afterlife?
It is a little... little scary.
You feel like you've got enough energy for this?
You sure? Okay. All right.
So, this is phenomenal...
because we've been able to get Dr. Gordon up here,
and he's brought other medical professionals with him.
Hi, Jamison. Dr. Gordon is here. Eric Gordon.
A pleasure, my cold hands. And forgive...
If I start to get loud, let me know.
I'm a family practice doctor who...
over the years, has started doing integrative medicine
and functional medicine. I've been working mostly with people with chronic illnesses.
In Jamison's situation, he has issues with how his body is producing energy.
But... is it really...
the thing that's keeping him sick now?
When you get the IV fluids, does that just mean you can stay upright longer
or do you have more energy otherwise
- It's a... It's... - Global?
- It's... It's like this and... and... - Less sound sensitivity?
- Mm-hmm. And... - And less photos-ensitivity?
So everything gets a bit better with the fluids?
- Mm-hmm. Yeah. - Okay, okay. That's important to know.
You have so much stuff happening in your jaw.
did you ever have any neck injuries or anything or...
He was in a car accident in his sophomore year
He hit somebody.
- Yeah. - He rear-ended them.
- Yeah. - Okay.
How shaken did your body get?
I mean, some of his worst pain, he couldn't lift his head,
couldn't be... um, have more than one pillow.
Yeah.
And we had to lift his head for him.
- To swallow pills. - Okay, so, that's quite an impact
on the neck and on the chest. Yeah.
Do you have decent veins? No.
All that weight lifting.
This is... We'll get some blood.
It'll take a while.
I just want to take a listen to your heart.
Tap you a little bit.
Is that tender down there at all? Okay.
So, let me... I don't want... Like I said, I think we've done more
with you than we should.
- No... - Yeah, I know,
'cause I want you alive tomorrow.
A pleasure, and I won't touch you too lightly.
See you later.
I appreciate it.
Oh, but let's see if we can get you well.
That's... Tomorrow.
Thank you.
Okay. See you tomorrow. Rest.
Hopefully, we're gonna be able to give Jamison,
at least, a better answer, and that's where we start.
- Hello. - Hey there.
- Hello. - Hi! Oh! Stopping by!
Happy birthday to you! Nothing better than laughter. Happy birthday.
- Thank you. - Mwah.
- You look beautiful. - Mm. How are you?
Saucy, baby.
- Hey. Coloring's good. - Thank you. You're sweet.
- Yeah. - Can we...
- Yes. - Open a bottle.
- Let's do it. - I have a gift and let's open it.
Yeah. Let's do it.
- Happy birthday to you, girl! - Happy birthday!
- So, drink it? - In the eye.
- Here's to 48. - I go...
Drink it faster.
I'm so blessed, by the way. I mean, you guys, I love you.
I love... I have such amazing friends, and I'm just glad you guys could come
be with me tonight a little bit.
I'm really going through a major healing crisis right now.
I've had, really, some hard days and some decent days.
Like, today was kind of a decent day for me,
even though I have... a lot of lock-down going on on the right side.
And we think that could be... contributing to the hypertension.
Since I've known Star, there's probably been at least a half a dozen
different doctors involved in her life,
and she believes them. She believes every one,
that they're the one that has the right answer.
So from a friend standpoint, it's so frustrating.
It's like an endless cycle.
I mean that was part of the reason that I wanted to not do the party.
But, also, was like, it's really not a time to be...
- Time to not party. - We thought, well, maybe 20,
30 people would come. At the end of the day, it was over 60.
Dystonia and all the different things, you don't even know what they are.
You never heard of him before. So, you hear the next thing
and it's just like how can this be?
There's no way for me to know what she's actually suffering from.
- That is beautiful. - Whoa.
- That is Star. - It's really pretty.
Oh, my God, Sarah.
Have there ever been moments when you or your family members were like,
"There's no way"?
I'd say that if I'm answering honestly, those thoughts go through your head.
Adorable.
If she is creating this, whether it's conscious or unconscious,
is it a cry for help or attention? I don't know.
Yeah. I mean, and plus it's really... When you're healing, you got to look hot.
- Yeah. - Right.
Don't you think?
How was your sleep? Lousy?
- Oh, it was so bad. - Yeah.
So, the issues that we want to make sure we deal with going forward,
okay, myalgic encephalomyelitis.
The problem with that name is that it's just not accurate.
I don't know what your illness is.
What does Jamison have? I don't know what Jamison has.
There are a subset of patients who did have inflammation in the brain.
But the vast majority of people with chronic fatigue don't.
And they're just as sick.
You have an illness for the lousy name, what can I say?
Multiple illnesses... Um...
It's not necessarily multiple illnesses. I don't think it's multiple illnesses.
It's multiple triggers
Jamison, I think has a cumulative effect of multiple insults,
and multiple imbalances...
And so the end result is your body isn't functioning well, and that's why...
it's rarely...
as simple as, here take this pill and you're better.
And with you, the car accident made a mess out of your neck.
That you weren't aware of.
He was in a terrible car accident.
I believe it that injured his neck and caused some problems
involving the vagus nerve.
Right at the back of your skull,
the vagus nerve comes out of a skull and it controls your gut
and your heart rate; keeps your heart rate slow
and that feeds back to the nervous system.
ME/CFS is a group of symptoms
Different people get there for different reasons.
The end result looks the same.
And with you, the emotional components, you're as well put together as most of...
better than most of the people I meet. That's not the issue.
This is an incredibly well-adjusted young man.
This is not an emotional problem, okay?
I really think the physical modalities and the physical work...
is more likely to get you... further.
It's just really reassuring that this doctor has come.
Jamison to having somebody to mentor through this kind of time
is going to help him.
Thank you. You're a pretty amazing young man,
so, let's see what we can do to get you back in the world.
- A pleasure, Jamison. - We hope to see you in Santa Rosa.
Where we had left it with Dr. Gordon was just keep moving forward,
and he can offer support in his daily treatments.
And that is so huge.
There's an endless amount of stuff to do 'cause, "Everything works sometimes."
- Yeah. - And it's figuring out which one
- is gonna work for him... - Yeah.
and which is do... and which is possible.
Yeah.
A lot happened during the visit.
It was overwhelming.
- Really a pleasure. - Yeah. Thank you.
- Good luck. - Thank you so much.
I was definitely surprised about Gordon's opinion.
I'm not sure how to feel about all of this.
- Going to miss me? A little bit? - Yes.
I don't want to go.
I think, like, "What the fuck am I doing?"
I don't want you to go, but I feel like I should... that you should go.
Like, I feel like it would be wrong for me to sincerely...
ask you to stay,
and mean it. I don't agree with that, but I don't... I don't want you to go.
Yeah, this is going to be really fucking sad.
It's going to be crazy.
I was supposed to wake up at four to drive Jesse to the airport.
That's not what happened.
I'm not exactly sure where Bekah and Jesse are.
So, that's kind of where things are at in terms of...
the changing of the guard here.
These proverbs will test
These waters
Will tell our stories for all time
Creators will bear the weight
of all that came before us