When and how did Kris’s Lyme symptoms begin?
About 12 years ago he was diagnosed with Fibromyalgia, which looking back, should have been the first indication that
a test for Lyme was warranted. But we suspect he’s been infected with Lyme anywhere from fourteen to thirty years
because he used to have these chronic muscle spasms, which is a common symptom. We were in LA at the time, in
Malibu, and I just don’t think doctors were looking for it or aware of it there then. But now we know it’s everywhere.
There are signs on my local playground that say beware of ticks.
Can you describe his Fibromyalgia?
He had massive, painful spasms all over his back and legs- it was so horrible- his nerve endings were causing golf ball-
sized, painful contractions that we battled with acupuncture, heat and massage, then finally a spinal cortisone shot by a
rheumatologist, and a low dose anti-depressant. This eight-month period he was in so much pain he could not work.
Two years earlier he had spent six weeks in the woods in rural, remote Vermont making a film called Disappearances.
He was on the forest floor for much of the shoot, being dragged in a makeshift sling and carried by his son in the film,
because he had been “shot” in the leg.
So, after so many years, how did he finally get diagnosed with Lyme?
During the aftermath of that film, Kris was diagnosed with moderate to severe sleep apnea, warranting a bi-level CPAP
machine, which he tried and refused to use. He had painful knees and annual knee shots, a pacemaker for
arrhythmias-which we now know could be from Lyme-so much Advil for headaches that he got anemic. After a year of
iron supplements and seeing a hematologist, he just wasn’t healthy-looking so I took him to an integrative doctor, Mark
Filidei, at Whitaker Wellness Institute. Upon examining Kris and watching the muscles in his forearms constantly
twitching, he announced, “He’s got Lyme Disease,” and ordered a blood test. The first test from LabCorp came back
suspicious, the second test by IGeneX was positive. This was in February 2016.
Excellent that the doctor knew to go to a reliable lab for Lyme like IGeneX. Most physicians don’t know that
the tests are only about 50% accurate at the major labs and that Lyme should be clinically diagnosed based
on symptoms. What did you do when you found out his diagnosis of Lyme?
Well, we got the news when we were on tour in the UK and Ireland, so immediately upon landing in the US, I went to a
local pharmacy and picked up Kris’s prescriptions for Doxycycline and Alinia. Soon after, we also started Hyperbaric
Oxygen Therapy (HBOT) and Transcranial Magnetic Stimulation (TMS) of the frontal lobe.
At this point, did anyone refer you to a Lyme-Literate doctor?
Yes, luckily, Kris’s cardiologist did her residency in New Jersey so she understood the cardiac involvement in Lyme and
said go to a Lyme specialist. We began working with Dr. Steve Harris in California, who added antibiotic intramuscular
injections to Kris’s protocol and is continuing to treat Kris.
But before this, wasn’t Kris misdiagnosed with Alzheimer’s?
Yes, for the past three years, he was treated for Alzheimer’s by two different neurologists. He was on two drugs for it,
Namenda and Exelon patches. But finally, a spinal tap and functional MRI ruled out Alzheimer’s, so he quit those meds
and the antidepressant for fibromyalgia. They also tested him for Lyme Disease in the spinal fluid and it was negative
but the doctor explained to me that Lyme does not live in fluid, it lives in tissue. It bores into tissue so you would really
have to do a biopsy of the brain to find it.
That’s what makes Lyme blood tests so unreliable. I always encourage people suffering with Lyme
symptoms or an autoimmune illness that’s linked to Lyme like MS, RA, Alzheimer’s etc to seek a second
opinion from a Lyme-Literate doctor.
Exactly. People need to know this! I can’t wrap my head around why this information is not more widespread! Since Kris
was diagnosed, so many people- even close friends of ours-are coming out of the woodwork telling us their stories and
they’re not being heard. This is why Kris and I are glad to come forward. If it helps anyone, then great.
Were you told Kris was going to die from Alzheimer’s?
Well, no, but eventually Alzheimer’s is fatal, as is life. What we were doing was keeping him on these medications that
would keep him from declining further for long stretches of time and then he would get worse and then he would
plateau again. We had a very fatalistic attitude than none of us were getting out of this alive.
Why did you start transcranial magnetic stimulation?
The TMS targets the frontal lobe of the brain that was abnormal on the MRI. His neurologist is such a proactive,
positive person and when she said, “let’s do this,” I was so ready to agree.
Can you describe his memory symptoms?
He could always remember songs, music is deeply embedded in the brain. The first thing I noticed was that he lost his
keen sense of smell. The next thing I noticed was his spatial awareness was off. Like, if he would come out of the men’s
room in the airport, he would start looking around and having no idea where to go. I had to watch him constantly, it was
very consistent with Alzheimer’s. And he would do these mini-mental status tests where they have you remember
certain presidents and things like that, and he was consistently failing them.
Did Kris think he had Alzheimer’s?
Actually, he has been complaining about having memory loss to his doctors for about 12 years and my understanding
of Alzheimer’s is that you’re not even aware you have memory loss. That was a big clue to me that maybe it was not
really Alzheimer’s. He would say “my memory’s shot, my memory’s gone.”
What were the doctors saying?
Well, after I questioned it, one of the head injury specialists that we saw looked at me and said, with a sad look on his
face, “You really don’t want this to be Alzheimer’s.” I said, “It’s not that I want it to be something else, it just does not feel
right to me.” Also, Alzheimer’s patients often fight things and don’t want to do certain things and Kris has always been a
very compliant patient. That was another clue to me. Subtle things.
Do you think he felt hopeless?
I don’t think he even knew to feel that way, he just kind of floated. He did a film with the director feeding him lines and a
teleprompter, and he is such a soldier. He never gives up.
What has treatment been like?
We had tremendous improvement after the intramuscular injections of Invanz, the Doxy and Alinia, thirty days of
hyperbaric oxygen and twenty days of TMS of the frontal lobe. How it all worked is impossible to say but I can tell you
that twenty days into theTMS, his personality was back. Of course, we are not done but that’s where we are right now.
Did he have Herxheimer reactions?
Oh, God, yes. He had three episodes of the most severe herxing. I wish I had him under medical surveillance because
it was so bad. The first time, he violently threw up all over the hotel bathroom- the shower curtain- and he was so
confused, he kept asking, “What’s happening? Why is this happening to me?” He was so disoriented. I’m gonna cry
thinking about it.
Then it calmed down til the next evening when he had another episode in the restaurant bathroom where he kept
saying, “What’s wrong with me,” and the way he was saying it, it was like when a little kid is confused. He just didn’t
know why. Then, his third episode gave him a tremendous amount of shaking and spasming in his body, and again, the
next day, he was totally fine. It’s the craziest thing. And so scary, I almost called 911.
How is he feeling now?
He still has spatial awareness issues and short-term memory loss. He sometimes even forgets he has Lyme! He shook
the hand of a lady the other day and she told him she had Lyme and he said, “Oh! Is it contagious?”
So, he really lives in the present and he feels good. We walked two miles yesterday. His physical health is incredibly
good. All his symptoms of fibromyalgia, sleep apnea and twitching are now gone with the Lyme treatment. He has
stayed off the two Alzheimer’s drugs and the antidepressant he was taking for the fibromyalgia. He is continuing to do
treatment as needed. When I look back, his symptoms really should’ve caused his doctors to test him for Lyme and
they missed it. Most doctors are just not looking for it.
It’s a balance trying to work with all these doctors and telling them that even if they don’t all agree, we have to keep Kris’
s best interest and we have to acknowledge he is getting better with Lyme treatment. His internist does not trust the
Lyme tests and doesn’t want him doing more antibiotics.
It’s alarming that so many doctors don’t seem to even want to understand the seriousness of this disease.
I know! You and Dr. Phillips did a great job of conveying that on your Fox interview last week. Seeing that young girl on
the special broke my heart. I don’t understand the stigma or lack of awareness. It’s like doctors don’t wanna touch it. I
think what I am teaching doctors now is that there is no downside in testing for and treating for Lyme when you can’t
find anything else that makes sense. Because not acknowledging Lyme can be so devastating.
I had one doctor say to me that unless you live in New Hampshire, you can’t have Lyme. I’m like, “Why won’t you
acknowledge Lyme? What is it, a religion?”
With over five million Americans living with an Alzheimer’s diagnosis, I have to wonder how many actually
have Lyme and not Alzheimer’s, and what it will take for doctors to look for Lyme before giving someone a
sentence like that. Malpractice suits? Complaints to medical boards?
Sadly, the average doctor doesn’t even check or test for Lyme, it’s not the norm. But they should! And now, with
treating it, Kris is doing so much better than he was three years ago. I couldn’t even get certain doctors to look at his
blood test and agree it was positive. But once he got his clinical assessment from his Lyme doctor, they all seemed to
finally agree. And then we got him off all the Alzheimer’s meds and it was like, “I’ll be damned!”
How was Kris able to function on the road before his Lyme diagnosis?
Right before he started treatment, he had two fainting episodes where we got really worried about him. We were in
Ireland and he was walking through the hotel lobby doors and he fainted. I grabbed him and yelled for help. He was
completely passed out. This happened two nights in a row at exactly the same time, after his shows, walking back into
the hotel lobby.
Thank God it was there because it was caught on camera and the hotel was nice enough to give us the footage to
show our neurologist. Since then, I’ve learned that that is failure of the autonomic nervous system, which Lyme attacks.
Did he have any neuropsychiatric symptoms? You mentioned
depression earlier. Do you think this was related?
In 1988 he was first given a diagnosis of clinical depression and he
went on an antidepressant for a while but it was also in a period of a
life where things were difficult. As he worked through his issues, he
went off of the antidepressant and then went back on a very low
dose because of the fibromyalgia symptoms.
In terms of other psych symptoms, it was more that his confusion
would trigger anxiety. He would ask, “where are we going, what are
we doing?” That kind of repeated thing. And that still persists today
to some degree. It seems like most of the damage is in his short-
term memory and spacial awareness.
Did any of that get better?
Not so much his working, short-term memory yet, but his whole
personality came back after three years. I could cry now thinking
about it. We were driving back from his sixth HBOT treatment and
he looks over at me and says, “Wow, I feel like I’m back.” And I
looked right in his eyes and I said, “OH MY GOD, HE’S BACK! It
was like, WHOA!”
When you say his personality is back, what was it like before
his Lyme treatment?
I think describing it as flat is the best way to explain it. Because he is
such a charismatic, funny, fun person and his intellect is so
amazing. Over the course of treating him for Alzheimer’s, there was
a slow slipping away.
Looking back over the years, how do you think none of Kris’s doctors caught this?
All these doctors were wonderful in treating him and caring, but nobody was finding the cause or connecting the dots.
The neurologist suggested anti-seizure medications for passing out, the fibromyalgia doctor was giving him
antidepressants for his body pain, his cardiologist gave him a pacemaker for his cardiac arrhythmias, his knees were
sore, so he got annual shots from his orthopedist.
Nobody was connecting the dots at all.
It wasn’t until I took him to the integrative doctor, Dr. Filidei, that he looked at everything and said, “This looks like Lyme
disease.” I’m just so grateful that he is so much better now. And I feel really lucky that our doctors are willing to work
with our Lyme-literate doctor. I know that is not always the case.
I bet he saw the best doctors money could buy.
The most expensive doctors don’t necessarily buy you the best treatment, that’s one thing I’ve learned. It’s not like he’s
immortal at eighty, but there’s not that big black void ahead of us anymore. He is so much better now than he was three
years ago. We are back hitting the road again. Check out his tour schedule at kriskristofferson.com.
You must be so relieved, Lisa!
I am relieved! And now we’re at a point where we can acknowledge and look at each other’s deficits with humor. I am
deaf in one ear and everybody is patient about that, and we laugh about it. It’s OK, everybody has a challenge.
We understand Kris’s deficits in spatial awareness and short-term memory loss and we laugh about it all the time. We
laugh at him and with him and we make the best of it because Lyme is so tragic that if you don’t have something to
counterbalance the sadness of that, it’ll take you down. The more we can get Kris to laugh, the healthier he is. Being
on the road, the laughter, the music. It’s great medicine. And I understand that when you have Lyme disease, your
quality of life will vary with each different person. You have to just do the best you can.
Also, I tell people to exercise because Lyme can only live in a low-oxygen environment. The more you get out and do
some aerobic exercise to get oxygen flowing through your body― if you are able to do that― the better.
Do you have any Lyme symptoms?
Well, I don’t, but the doctor thinks I should be tested since it potentially can be sexually transmitted and he doesn’t want
me to reinfect Kris as he’s getting better.
Are you happy with Kris’s care now?
Yes! The good news is that the doctors we have now support us going to a Lyme specialist and when they don’t know
the answers to certain things, they tell me to ask him.
That’s really unusual and wonderful. Certainly, that was the opposite of my experience.
Yeah, what’s that about? Again, I just don’t get it. People are coming up to us all the time now with their Lyme stories
and it’s just so tragic! Doctors are not looking for this and then people end up down the road so much sicker. It’s
heartbreaking. I am fortunate my doctors are willing to admit when they are unsure about something and have Kris’s
best interest at heart.
What’s life like now for Kris?
We’re on the road right now with Willie [Nelson] and the Haggard boys. Kris is doing what he loves, he’s eighty and he’s
healthy - we just walked for four hours in the LA Zoo with our grandchildren.
He doesn’t remember bypass surgery, and so many things, but recently, he did this big Q&A in front of 600 people and
my daughter and I were scared to death about how it would go, but it turned out to be the best, funniest thing ever.
And that’s the deal now, Kris is totally present and sometimes we forget he’s battling anything. At times, he’ll still say,
“where are we going, what are we doing,” but he really rolls with it now. That’s just how it is. He is right here, right now.
We’re jamming with it. It’s such a weird, beautiful journey.
For more information about Lyme and to find a specialist near you, go to ILADS.org
Kris Kristofferson, still crooning and gorgeous at
80, is a Country Music Hall of Famer who ranks
among the most versatile of American talents. He’
s been a Golden Gloves boxer, a Rhodes scholar,
a college football player, an acclaimed actor, a
military officer, a helicopter pilot, a Grammy-
winner, a self-described screw-up and an icon.
Like many, I was stunned and elated to read in
Rolling Stone that Kris’s long-diagnosed
Alzheimer’s turned out to be Lyme Disease, and
that with proper treatment, he is back on the road,
doing all the things he loves, and being his
blazing, irreverent self again.
Here, Kris’s fierce, intuitive wife, Lisa, tells us how
she shepherded him through a haze of missed
opportunities and misdiagnoses and got him
...His Long-Undiagnosed Battle with Lyme Disease
|Special thanks to
THE HUFFINGTON POST
(Used by Permission)
and Advocate for People
Suffering with Lyme and
Kris on the road with Ben and Noel Haggard
(Photo by Lisa Kristofferson)
|Dana Parish is a NYC-
based SonyATV singer/
songwriter known for
her powerful voice and
Parish's first single,
"Not My Problem", from
her debut album
at #23 on Billboard,
and she soon became
one of the highest-
artists ever. This led
to several appearances
on major talk shows,
including The CBS
Morning Show, Good
Morning America, and
KTLA. An in-demand
penned two songs
(Thankful and Always be
Your Girl) on the most
recent Celine Dion
album and had the #1
song in China with
"Someday I'll Fly" by
G.E.M. Her song
performed by Jacquie
Lee, The Voice
Season 5 finalist, was
a chart success. She is
now working on the
albums of superstars.
While still fully engaged
in her music career,
Dana has become an
advocate and champion
for those suffering
with Lyme and other
Follow Dana on
|"People need to know
this! I can’t wrap my
head around why this
information is not more
widespread! Since Kris
was diagnosed, so
many people- even
close friends of ours-
are coming out of the
woodwork telling us
their stories and they’
re not being heard.
This is why Kris and I
are glad to come
forward. If it helps
|"I had one doctor say
to me that unless you
live in New Hampshire,
you can’t have Lyme.
I’m like, 'Why won’t you
What is it, a religion?'"