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Kris Kristofferson's Lyme disease misdiagnosed as Alzheimer's
Iris L.
Posted: Wednesday, February 22, 2017 4:29 PM
Joined: 12/15/2011
Posts: 18368


Annie789 posted this on the Caregiver board.  This actually was reported half a year ago, but I only read it today.



Actor and songwriter Kris Kristofferson and some of those closest to him are speaking out about his health problems and their surprising cause.

Kristoffferson struggled with memory problems in recent years and was told he had Alzheimer's disease, but it appears he was misdiagnosed and all along has actually been suffering from the tick-borne illness Lyme disease.

Articles in Rolling Stone and the entertainment magazine Closer Weekly reveal that the 80-year-old -- whose songs have been covered by the likes of Johnny Cash, Janis Joplin and Elvis Presley -- has struggled through a years-long medical odyssey.

Kristofferson and his wife Lisa told Rolling Stone that for years, doctors had been telling him that his increasingly debilitating memory loss was due to eitherAlzheimer's or to dementia brought on by blows to the head from boxing and playing football and rugby in his teens and early twenties.

"Some days, Kristofferson couldn't even remember what he was doing from one moment to the next," the site said of the actor who starred alongside Barbra Streisand in the 1976 film "A Star is Born," and who's known for his roles in the Blade movies and other films.

Earlier this year, though, a doctor decided to test Kristofferson for Lyme disease, which can cause neurological problems, including memory issues and what some describe as "brain fog," as well as a broad range of other symptoms. The test came back positive.

His wife told Rolling Stone she believes he picked the infection up from a tick as he crawled around the forest in Vermont during six weeks of filming the movie "Disappearances."

"He was taking all these medications for things he doesn't have, and they all have side effects," she told the magazine. After the Lyme diagnosis, he dropped those medications and went through three weeks of treatment for Lyme.

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"It's like Lazarus coming out of the grave and being born again," Kristofferson's friend, Nashville singer-songwriter Chris Gantry, told Closer Weekly.

Gantry, who's known Kristofferson since 1964, said he was heartbroken when he thought his longtime buddy seemingly had Alzheimer's.

"For the past six or seven years, there was this slow realization that he was becoming forgetful. It was apparent," Gantry said. "For the past six or seven years, there was this slow realization that he was becoming forgetful. It was apparent."

Bucky Kahler, Kris' best friend since middle school, weighed in in the Closer article, too. "[Kris is] in great spirits," he said."He's getting better and better."

While Lyme disease can sometimes mimic Alzheimer's with dementia-like symptoms, there are effective treatments available for Lyme, including antibiotics -- unlike Alzheimer's, for which there is currently no cure.

The Centers for Disease Control and Prevention estimates there are about 329,000 cases of Lyme disease in the U.S. each year. Only about 30,000 are officially confirmed and reported to the CDC.

Doctor's often look for a hallmark bulls-eye rash around a tick bite, but not everyone infected has an obvious mark. Symptoms may include a fever, rash, facial paralysis, and arthritis. Other severe problems sometimes linked to Lyme include heart and brain issues and can appear months or even years after being bitten by an infected tick.

"Kris is as sharp as he's been in the past 20 years because of his treatments," another longtime friend told Closer. "His wife, Lisa, and his eight children see a different Kris now. It really is a modern-day medical miracle."

© 2016 CBS Interactive Inc. All Rights Reserved. 

http://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/


julielarson
Posted: Wednesday, February 22, 2017 4:36 PM
Joined: 9/30/2015
Posts: 1155


This is great, I have had a crush on him since seeing a Star Is Born!
The_Sun_Still_Rises
Posted: Wednesday, February 22, 2017 6:28 PM
Joined: 7/24/2015
Posts: 3020


Some Lyme doctor, Dr. Alan someone or other, autopsied 10 Alz brains and found 7 actually had Lyme in them.  Meaning, that a good potential of Alz patients likely have Lyme disease rather than Alz....and progressive antibiotic treatment ay cure them. 

The problem with dx'ing late stage Lyme (chronic Lyme) is that the Western Blot that they run, ONLY has a 35% chance of picking it up - so there are virtually a great many false negatives.  The best of the best test is Igenex, but is $300 up front (reimbursable by insurance).  Well, best of best is a blood culture but years ago that was $600 and not covered by insurance...but Igenex will do. 

You can also prove that you have bacterial infection at foot with a blood smear, or with C3a and C4a tests,  or proving Vit D Reversal Pattern (25,D and 1,25D).

Those who have skipped up in auto-immune, however, would not likely do well on antibiotics (as it sparks the immune system....when trying treat Lyme)....nor, do they, ironically do well steroid immune suppressants.  In general....per what was reported by the extensive Lyme Community. 

But YES, if I had not already been down that road - I would DEFINITELY check in it upon get Alz dx....because no need die if simple antibiotics save you.  

<3


Mimi S.
Posted: Wednesday, February 22, 2017 6:31 PM
Joined: 11/29/2011
Posts: 7027


This reiterates the importance of a complete diagnostic workup such as outlined in Doraiswamy and Gwyther, The Alzheimer's Action Plan.  Blood tests not given.
BlueSkies
Posted: Thursday, February 23, 2017 4:45 AM
Joined: 2/24/2016
Posts: 1096


I got tested for Lyme disease and it came back positive first time and was redone two more times by the lab and was negative each time it was redone.  So was shown as a negative test result to Lyme. 

 Explanation at bottom of lab results page was that if results come back positive the test is redone and it must come back positive again to be considered an actual positive. 

Anybody ever hear of that?  

Wonder what causes it to be positive sometimes if you don't have it?  Doesn't seem like a very accurate test to me.


The_Sun_Still_Rises
Posted: Thursday, February 23, 2017 6:48 AM
Joined: 7/24/2015
Posts: 3020


YES...I have heard of that.  The standard Western Blot is notoriously hated by the Lyme community - but ANY positive should be considered positive.  In the Lyme Community they consider that you need go a Lyme Literate Medical Doctor or LLMD. 

The issue of Lyme disease, is that it is currently MUCH debated like AIDS was in the 80s, and little understood.  It is soooo contested and hard fought in the medical community, that you are unlikely get REAL answers from anyone other than the patients in the community.  On the good note, they have a HUGE community and are all real intelligent. 

The hardship of Lyme is that it a spirochete so it burrows...and it can go in any tissue body, including brain...so can be hard detect in blood.  Especially later than 2 weeks after the original tick bite.  And, like for me....I clearly had it as a kid...but it can still wreek havoc in body in adulthood if it was not treated. 

In Canada, they don't recognize Lyme...so they dx and treat it as MS.  Here, if you go a Rheumatologist you will get dx'd with Fibromyalgia....if you go Infectious Disease Doctor...and if you get positive Western Blot (which only picks up 35% of confirmed cases), you will - at best - get 6 weeks antibiotics, oral.  IF you go a Lyme Literate doctor you will be treated for years.....some do IV antibiotics, which have the best results, some do herbs.  Most the LLMDs are cash pay...and it expensive.  I had an integrative doctor that was covered by insurance and I had 2 years of 4 antibiotics, all insurance covered. 

What I observed within the Lyme Community as a whole, however, is about 1/3 patients got immediately better on antibiotics; 1/3 went up and down (these people often claim healed it and re-got it, but probably always had it); and 1/3 just got much sicker on the antibiotics (of which I was one of them).  I noticed (because I notice patterns and draw correlations) that this was EXACTLY like the patterns noticed in MS....the relapsing remitting, and the steady progression.  I wondered if Lyme attacked the brain. 

However, NO ONE in the Lyme community EVER complained of any more than "brain fog"....NONE were having the brain issues I was having.  So I am, as far as I know, the ONLY person (except now Obrien and BlueSkies) have Lyme dx and then be dx'd dementia. 

NO standard doctor will tell you that you NEED the Igenex Lyme Test....but you absolutely DO need it in order rule it in or out.  But even so...there is NO truly effective treatment for Lyme...yet.  And, even if you have it - NO doctor going take it seriously.   So you kind of f'd, unfortunately. 

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grandmalynda
Posted: Thursday, February 23, 2017 6:52 AM
Joined: 12/3/2016
Posts: 374


So happy for him, must be a tremendous relief!  Hoping for all the best for him and his family.

--Lynda


obrien4j
Posted: Thursday, February 23, 2017 12:54 PM
Joined: 11/18/2016
Posts: 451


Yes, Sun and Blue Skies- I am an official member of that Lyme Disease community as well. The rheumatologist I went to even saw the bulls eye-rash that the CDC claims is sufficient proof of the disease and said I didn't have it! I wonder how some of these doctors even get licensed to practice! My LLMD told me that once it crosses the blood brain barrier, you're fried.  But like Sun said, once it goes chronic, you're done- just like dementia- 2 diseases with no cures, progressive, basically no treatment, if it goes chronic cause antibiotics don't do *&%$ but mess with your gut. All you can do at that point, is treat the symptoms- which is what I've been doing all these years.

I did call my LLMD for advice as far as the dementia is concerned ,but he wasn't much help. Don't want to spend boatloads of money on empty promises- been there,done that.


Iris L.
Posted: Thursday, February 23, 2017 2:32 PM
Joined: 12/15/2011
Posts: 18368


If a person has dementia from another cause, the diagnosis will become dementia not otherwise specified.  The progression will not follow exactly like Alzheimer's Disease, but you may get an idea of how to proceed.  Nevertheless, some doctors will not make that distinction, but will lump most dementias under Alzheimer's Disease.


Iris L.


The_Sun_Still_Rises
Posted: Thursday, February 23, 2017 3:56 PM
Joined: 7/24/2015
Posts: 3020


Well my FIRST dx in May 2015 was Major Neurocognitive Disorder due Lyme Disease (apparently she had no listened me hear that that was old dx.   My second dx in December 2015 was Major Neurocognitive Disorder (because spinal Lyme test ruled that out).  My 3rd dx, from doctor/neurologist was Alzheimer's. 

MND is the DSM5's fancy new term for Dementia.  I did NOT get an "not otherwise specified" attached on any my dx's....but that may have been what they did before March, 2015 when the DSM changed from 4 and become 5. 

I find it interesting and strange that 3 of us now have Lyme in backgrounds.  And I am very happy for the 3rd of those with Lyme that get better on antibiotics...when they lucky enough be given them. 

As I say that guy, Dr. Alan someone or other autopsied 10 random brains from Alz patients and found Lyme spirochetes in 7 of them. 

<3


Iris L.
Posted: Thursday, February 23, 2017 7:18 PM
Joined: 12/15/2011
Posts: 18368


Sun, you are correct, the "not otherwise specified" diagnosis is no longer used.  I am sorry it was dropped because I believe it  allows an understandable explanation for patients like me.


In the Nun Study, there were women who clinically had dementia but whose brains did not show the  pathology of AD at autopsy.  I wonder if the brains were ever tested for Lyme disease.


I'm not up to date on Lyme diagnosis, but there can be false positives for Lyme, as there are false positives for syphilis.



Iris L.

The_Sun_Still_Rises
Posted: Thursday, February 23, 2017 9:27 PM
Joined: 7/24/2015
Posts: 3020


My understanding is that the current neuropsych tests would show, due for whatever reason they thought it due for....like due for medical reasons...which I am guessing what they would put for you. 

The inherent problem in the medical world, esp in research, is that it tends be very narrowly focused...in the Dr. Alan MacDonald study, he a Lyme researcher...and he was curious if it caused Alzheimer's...and his study of the 10 Alz Brains that had Lyme in them, is well known among the Lyme Community - and unheard of in the Alz Community (for some odd reason).  It sort of like anti-depressants suppress thyroid function (low thyroid can also cause depression)....thus anti-depressants are said make depression worse in some people - BUT, do psychiatrists read endocrine journals??  No...so psychiatrists will just give those patients MORE anti-depressants.  Or, you can have a bad back with pinched nerve and all you need is a chiropractor, but you doctor will recommend surgery.  Because departments just don't talk each other.  This is very strange me...as it makes no sense...but is the way we do the world...and people seem accept that. 

There would NOT be a false positive on the Igenex test...as it tests for your antibodies for Lyme...if you had NOT been exposed Lyme, your body would NOT have antibodies for it...it really that simple.   

The problem with the Western Blot...is that FIRST they screen with a cheap simple tests and ONLY if that is positive will it go one for the Western Blot.  BUT, the doctor who patented the live culture test for Lyme - meaning pulls LIVE Lyme spirochetes from people - those people, now absolutely confirmed having Lyme - only 35% will test positive on the standard Western Blot screening test - meaning MOST people with Lyme are missed - thanks modern medical practice. 

IF you can catch it RIGHT after tick bite and get sufficient 6 weeks antibiotics - you stand a good chance be rid of it for life.  BUT....most people do not see the tick (many as small as a grain sand), most never get the bull's eye rash....and thus Lyme lives and grows within its host...leaving the blood stream and burrowing in the tissue (also rendering it hard pick up in blood tests).  From there, it coats itself so as protect it from a person's immune system.  And then Lyme do another very funny, interesting dance - it attack you hypothalamus...and it lower you body temp, lower than normal, and it turn down your immune system.  Over half the population in the Lyme Community claim that they never get sick when colds go around. 

C3a will be high in Lupus, and C4a will be high in Lyme - these are specific markers of the immune system differentiate these 2 diseases apart.  There also the CD57.

As well, Lyme have another tell tale sign...the Vit D Reversal Pattern....which I will detail in a moment.

So a positive Igenex test (or having had the Bull's Eye Rash, or a positive Western Blot) PLUS a a high CD57 and high C4a and the Vit D Reversal Pattern all prove - proof positive that you have Lyme Disease.

The Vit D Reversal Pattern is very curious (esp considering the recent STRANGE trend re take more Vit D)...when we take Vit D and when we test Vit D (the 25,D test) we are testing the STOREAGE FORM of Vit D...this component of Vit D need undergo 2 more conversions before becoming useable by body - 1 in blood stream and the 2nd in kidneys...before it become 1,25 D...the ACTIVE FORM Vit D that actually dock in the Endocrine Receptors our cells.  IF you get your 1,25 D tested, it will come with a bog paragraph - for research only...but, it make no sense me that they don't concurrently test these - because you can tell a lot about a patient's underlying health this way. 

When a person have a bacterial infection (or a genetic defect), they will over-make an enzyme lovingly called CYP27B1...which converts the storage Vit D (the one they test and tell you is low) making it in the active Vit D (the one they do not normally test)...meaning, you will over convert Vit D and will ALWAYS appear low, when you in fact have more than you should. 

The problem with this is, that Vit D and endocrine hormone...and thus shares the receptor with thyroid...and in a state or high active Vit D, the Vit D will boot T3 from the receptor leaving a person low thyroid even though their blood levels thyroid hormone are normal. 

THIS is how the body becomes tired and makes you sleepy when you sick with a cold.

Chronic Late Stage Lyme Disease can affect the body in 3 ways...it can attack the heart, it can attack the large joints (hips, knees which is sort of opposite other arthritis which attack small joints first), and it can attack your neurological system. 

I was previously dx'd by a previous doctor with Late State Neurological Lyme with Lyme Arthritis.  Granted, I had all the markers...and many of the antibodies that the Lyme Literate peeps say is it, but was not CDC positive - AND - this came immediately after my ANA and RA factors also came back positive (showing auto-immune), and all my inflammation markers were up. 

There a HUGE push in the Lyme Community get the C3a and C4a tested rule out Lupus before start antibiotics, because (they say) the antibiotics would trigger immune system and flare and possibly kill you. 

I became sick as a dog on the antibiotics. I watched as the 3rd of people on antibiotics got worse...I became friends many them, I gal nearly died!  I kept trying say my previous doctor - could this be because I auto-immune?  She kept putting this off the "Herx" reaction...but I did not agree.  I was made largely bedridden, I could barely walk...I couldn't walk in mornings.  It was 2 years of HELL, sheer HELL for me.  I was in the most ever-loving pain level 8-9. I would have roll out of bed morning fall on floor...pull self on floor toilet and pulls self up on toilet...and then use doorway pull self up stand...and by some strange feat, my bones held me up...I would slide along the walls.  And I could not understand why my body kept waking up.  I was that sick.  Meanwhile my liver numbers are skyrocketing, my pancreas, my gall bladder, all freaking out...and my previous doctor ignoring this...as well as the fact that I was no longer digesting any food.  I can understand Obrien's not wishing go back that route.  I am, understandably, grateful my new doctor. 

I do think...because Lyme tones down a body's immune system....that Lyme can be an auto-immune person's best friend.  And I wonder if Lyme does not account for much of the the low-grade autoimmune population out there. 

In any event, there a lot about Lyme. And I am sure a lot more after I stopped treatment some years ago. 

Have you seen the documentary, Under Our Skin?? 

<3