CPT Legends - “A Slow Slipping Away”— Kris Kristofferson’s Long-Undiagnosed Battle with Lyme Disease

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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

 07/06/2016 05:37 pm ET

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·  Dana Parish  Singer/ Songwriter/ NY’er/ Dog-rescuer/ Champion for those suffering with Lyme and associated diseases

PHOTO BY MARY ELLEN MARK

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 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, 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.

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 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.

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For more information about Lyme and to find a specialist near you, go to ILADS.org.

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