Everyone should read the following article about Kris and Lymes disease because it can get you.
“A Slow
Slipping Away”— Kris Kristofferson’s Long-Undiagnosed Battle with Lyme Disease
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PHOTO BY
MARY ELLEN MARK
Kris Kristofferson, still crooning and
gorgeous at 80, is a Country
Music Hall
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 back.
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
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
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
Yes, luckily, Kris’s cardiologist
did her residency in New Jersey California
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.”
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.
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.
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
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
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.
PHOTO BY LISA KRISTOFFERSON, JUNE 2016
Kris on the road with Ben and
Noel Haggard.
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 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?
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.
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.
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.
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