Archive for the ‘Psychological Aspects’ Category

Kris Kristofferson’s Shocking Tale of Lyme-Induced Alzheimer’s

https://www.lymedisease.org/kris-kristofferson-lyme-alzheimers/

Kris Kristofferson’s shocking tale of Lyme-induced Alzheimer’s

By Dana Parish

Sept. 30, 2024

In 2016, I was floored by Rolling Stone’s cover story on Kris Kristofferson’s Lyme-induced Alzheimer’s.

Having almost died from heart failure after 12 “top” NYC doctors neglected to properly treat my own case of Lyme & Bartonella in 2014, I wanted every possible detail. I had a million questions.

I was introduced to Kris and his wife, Lisa, by a mutual friend, and honored that they trusted me to write an in-depth piece for my HuffPo column documenting his tumultuous health journey, from earliest symptoms of fibromyalgia and cardiac arrhythmias to severe memory loss, and astounding, significant recovery.

In light of the terrible news of his recent death, I couldn’t help but wonder if Lyme played a role, and felt compelled to shine light on this important story again. The media is largely ignoring it. Acknowledging the truth about chronic Lyme and the vast driver of autoimmune, psychiatric and neurologic illness that it is, is touching the third rail.

I am also struck, again, by the uncanny overlap between chronic Lyme and LongCovid, from their dark politics and conflicts of interest, severe effects on the brain and body, to how they both can persist long after initial infection. It’s also notable that those with Lyme had worse COVID outcomes. There seems to be nothing a wily, misunderstood infection can’t do. Kris’s story is a perfect example.

I am forever grateful for the awareness he raised about Lyme and infection-mediated chronic illness. Sincere condolences to Lisa and the Kristofferson family.

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. I also like MDL Labs. 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.

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.

Dana Parish is a singer, songwriter, author, and a major advocate for Lyme disease patients. She co-authored the book Chronic with Dr. Steven Phillips. This interview and other writings are available on her Substack newsletter Third Opinion. Click here to subscribe.

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**Comment**

And that is a typical Lyme/MSIDS story – which can vary in little details but overall explains what a chronic/persistent case looks like.

Notice the vast improvement with treatment.

A patient would not have this improvement IF they weren’t infected.  

Yet, the band plays on and nothing changes.

For more:

 
 

Category:

Activism, Alzheimer's, Heart Issues, Lyme, Psychological Aspects

HHS To Host Virtual Session on Mental Health Effects of Tick-Borne Diseases

https://www.hhs.gov/oidp/initiatives/tick-borne-diseases-associated-illnesses-national-community-engagement-initiative/index.html

Tick-Borne Diseases & Associated Illnesses: National Community Engagement Initiative

This image depicts an adult female lone star tick, Amblyomma americanum, that was crawling on a blade of grass. Source: CDC Public Health Image Library.

Tick-borne diseases are a serious public health problem. Join us at one of our engagement meetings to

  • Learn about relevant initiatives and developments
  • Hear updates from federal agencies
  • Provide input about patient concerns and priorities

Audience: The general public; patients, caregivers, family members, and advocates; clinicians and healthcare providers; researchers; funding organizations

Upcoming Meetings

Virtual Community Engagement Sessions

Three virtual sessions will cover the topics of mental health, diagnostics, and treatment. These topics chosen were by the public at the San Francisco meeting on June 11, 2024.

Session 1: Mental Health and Neurological Effects

When: October 24, 2024

Time: 1:00 pm – 4:30 pm Eastern

Where: Virtual

Register to Attend

Meeting Goal: The purpose of this meeting is to engage the public—patients, caregivers, and healthcare providers, in particular—in an educational and informative session on the mental health and neurological effects of tick-borne diseases and associated illnesses and conditions (TBDAIC). Presentations by clinicians and researchers will provide insights into these complex and multi-faceted topics.

Meeting Objectives:

  • Validate the patient and caregiver experience.
  • Educate the audience about the nuanced mental health challenges of TBDAIC.
  • Describe potential neurological effects of certain TBDAIC.
  • Provide resources for patients and caregivers seeking help with the mental health effects of TBDAIC.
  • Furnish information to help healthcare providers recognize, treat, and proactively address the mental health effects of TBDAIC in their patients.
Meeting Agenda
Time Agenda Item
1:00 pm – 1:15 pm Introduction and Welcome Remarks

  • James Berger, MS, MT(ASCP), SBB
    Office of Infectious Disease and HIV/AIDS Policy (OIDP)
  • B. Kaye Hayes, MPA
    Office of Infectious Disease and HIV/AIDS Policy (OIDP)
  • ADM Rachel L. Levine, MD
    U.S. Department of Health and Human Services (HHS)

Clinician Perspectives
1:15 pm – 1:45 pm Neuropsychiatric Aspects of Tick-borne Diseases and Associated Illnesses

  • Brian A. Fallon, MD, MPH
    Director, Center for Neuroinflammatory Disorders and Biobehavioral Medicine
    Director, Lyme and Tick-Borne Diseases Research Center at Columbia University
1:45 pm – 2:15 pm Neurologic Lyme Disease in Children: Preview of an Ongoing Clinical Study

  • Lise E. Nigrovic, MD, MPH
    Senior Physician in Pediatrics, Boston Children’s Hospital Professor of Pediatrics, Harvard Medical School
2:15 pm – 2:45 pm It’s Not Just About Avoiding Red Meat: Giving Voice to the Untold Implications of Alpha-gal Syndrome

  • Scott Commins, MD, PhD
    Medical Director, UNC Allergy & Immunology Clinic at Eastowne Professor of Medicine, Division of Rheumatology, Allergy, and Immunology, UNC School of Medicine
2:45 pm – 3:00 pm BREAK
3:00 pm – 3:20 pm A Clinician Toolkit: Improving Care for Patients with Prolonged Symptoms and Concerns about Lyme Disease

  • Grace E. Marx, MD
    Medical Epidemiologist, Centers for Disease Control and Prevention

Researcher Perspectives
3:20 pm – 3:50 pm Brain Changes and Symptom Correlates in Lyme disease

  • Cherie Marvel, PhD 
    Associate Professor of Neurology and Psychiatry, Johns Hopkins University School of Medicine
3:50 pm – 4:20 pm Powassan Encephalitis: An Emerging Tick-Borne Disease of Human Health Concern

  • Saravanan Thangamani, PhD
    Professor of Microbiology and Immunology, Upstate Medical University, Syracuse, NY
4:20 pm – 4:30 pm Concluding Remarks and Adjournment

  • James Berger, MS, MT(ASCP), SBB (OIDP)
    What did we hear today?
    What’s next: Upcoming sessions and Portland ME Public Meeting

This is a draft agenda and subject to change

Sessions 2 and 3

Details coming soon.

________________

**Comment**

Just don’t expect much from this…..

For more:

To all Members of the Tick-Borne Disease Working Group,

And where are we today after this SIX YEAR pacifier????????

“Chronic Lyme is a religious belief” – Dr. David Walker, Co-Chair of the Tick-Borne Disease Working Group. https://www.lymedisease.org/tuttle-comment-tbdwg-nov17/

I recommend reviewing that link above which includes a list of references that the CDC refuses to acknowledge along with the 363 references of chronic Lyme after antibiotic treatment:

Persistent Lyme infection: 363 Peer-Reviewed Studies
https://www.dropbox.com/s/wypdcr45cfmq16d/Persistence3.docx?dl=0

And why would the CDC refuse to recognize/study chronic Lyme disease in great detail you might ask? Because a chronic relapsing seronegative disease does not fit the business model of vaccine development, patent royalties and pharmaceutical profits. (Follow the money) Chronic Lyme does not fit any vaccine model.

And nothing, my friends, has changed.

But, I don’t mean to stop anyone from participating.  Just know the score.  Hey, let it rip and see what happens.  We have absolutely nothing to lose.  Also – it’s always helpful to know what the enemy is thinking.

Category:

Activism, Lyme, Psychological Aspects

Tick Bite Leads to Murder-Suicide

https://www.trialsitenews.com/a/true-crime-as-true-lyme-tick-bite-leads-to-murder-suicide

True Crime as True Lyme: Tick Bite Leads to Murder-Suicide

Investigative Journalist at Trial Site News | In this to change this.
Jul. 24, 2024, 4:30 p.m.

Tortured by Lyme disease, a young man killed his friend and himself. He is not alone.

MARY BETH PFEIFFER

For decades, Lyme disease physicians have seen a small share of late-stage patients with symptoms far beyond the physical ravages of a tick bite. These patients, estimated to be 1 percent of chronic Lyme psychiatric cases, manifest brain disorders so intractable that they become violent, even homicidal.    

Now, a new article in the science journal Heliyon validates these observations and reveals possible mechanisms driving them. It tells the horrific story of a 32-year-old man whose tickborne infection at age 14—one of several—went unrecognized until it was unresponsive to treatment. Failed by short-course antibiotics that mainstream medical guidance swears by, he descended into substance abuse, as many chronic Lyme patients do, to ease his anxiety, depression, and physical pain.

Finally, in the delusional throes of PCP withdrawal, he walked next door, impulsively killed his best friend, stabbed the friend’s father and brother, and turned the knife on himself. He died on a bathroom floor, his mother having tried in vain to stanch two neck wounds.

All of this is a likely outcome of poorly treated Lyme disease under medical protocols that leave even early-treated patients sick—36 percent at six months and 5 percent at fifteen years. While animal studies and a handful of post-mortem reports have illustrated the failure of recommended treatments to quell Lyme disease—using antibiotics in insufficient strength or duration—this study goes further.

For the first time, based on analysis of autopsy samples, it shows both how persisting infection combined with chemical brain changes from substance abuse may have contributed to a disastrous outcome.  (See link for article and study)

________________

**Comment**

It’s stories like these that also make me highly critical of any federal attempt at rectification.

This story is a perfect example of how many go undiagnosed for so long they become recalcitrant.  The picture becomes muddier yet as they seek out ways to simply cope – and in this case turn to harmful drugs which adds a whole other dimension to an already complex picture.

The study thankfully was led by none other than Dr. Robert Bransfield, a literal icon in the world of Lyme and psychiatry.  He’s single-handedly written pretty much all that is known about how Lyme/MSIDS affects the brain.  Even though since 2015 the APA has recommended that evals for mental illness include assessments of ‘locally endemic infectious diseases such as Lyme disease,’ be done, they typically aren’t done.

The study showed that the patient had attached ticks on him at least fifteen times.  At 14 he developed the hallmark summer flu-like illness Lyme is known to cause that his pediatrician considered to be caused by a virus despite an attached tick!  His brain was found to have major inflammation and quinolinic acid – both of which are common in late Lyme disease.  PCP, the illegal drug he took reduces quinolinic acid.

The patient sought but was denied a bed in a substance abuse rehabilitation facility.  PCP withdrawal is known to cause fear, agitation, anxiety, irritability, hallucinations and flashbacks.

For more:

Category:

Activism, Psychological Aspects, research, Ticks

Multiple Borrelia Species in Brain of Man With Chronic Lyme Disease

https://danielcameronmd.com/autopsy-borrelia-brain-lyme-disease/

AUTOPSY REVEALS MULTIPLE BORRELIA SPECIES IN BRAIN OF MAN WITH CHRONIC LYME DISEASE

lyme-disease-brain

Several post-mortem studies have demonstrated the presence of Borrelia spirochetes in the brain and central nervous system of patients with a history of Lyme disease. In this case report, investigators add to the growing evidence that Borrelia spirochete can reside in brain tissue even after prolonged antibiotic treatment.

By 

In their article, “Concurrent Infection of the Human Brain with Multiple Borrelia Species,” Golovchenko and colleagues describe the case involving a post-mortem brain autopsy on a man who suffered for more than 10 years with neurologic and psychiatric symptoms due to Lyme disease.

The patient underwent repeated testing with “borderline positivity for Borrelia infection, followed by the prescription of several antibiotics, which provided no clinical improvements, followed by hospitalization at psychiatric clinics,” the authors state.

CASE REPORT

The 28-year-old patient visited his physician in 2004 after developing an erythema migrans (EM) rash. Subsequently, he was diagnosed with Lyme disease and treated with antibiotics.

However, his condition worsened and he began exhibiting neurological symptoms, including “brain fog,” reduced psychomotor performance and difficulties with concentration and processing of visual and auditory stimuli.

“Here we report the case of a patient who, after being infected by Borrelia and treated with antibiotics continuously, progressed toward neurologic/psychiatric symptoms over the subsequent 13 years.”

In 2017, test results were positive for Borrelia with both IgG and IgM anti-Borrelia antibodies in serum. Several months later, he was admitted to the Psychiatric Department of the University Hospital Olomouc in the Czech Republic.

On February 2018, testing revealed borderline positivity for Borrelia-specific IgM and strong positivity for IgG.

The IgM immunoblot was positive for the presence of OspC from B. afzelii, B. garinii, and B. burgdorferi s.s., and the IgG immunoblot was borderline positive for VlsE from B. afzelii, B. garinii, and B. burgdorferi s.s.

The patient was prescribed a combination of antibiotics which included: minocycline, azithromycin, and hydroxychloroquine.

Spirochetes found in brain tissue of Lyme disease patient

Seven months later, he was hospitalized again and diagnosed with schizotypal personality disorder and somatoform disorder and discharged.

One year later, the patient committed suicide.

“The patient left behind a letter expressing the urgent demand for scientists to analyze his brain for the presence of [Lyme disease] spirochetes.”

An autopsy was conducted.

“PCR analysis was performed on different parts of the brain to determine if Borrelia could be detected in the brain,” the authors state.

Testing confirmed the presence of DNA in 2 spirochete species – B. burgdorferi and B. garinii.

Each Borrelia species, however, was found in different parts of the brain.

“Even though both spirochete species were simultaneously present in human brain tissue, the brain regions where the two species were detected were different and non-overlapping,” the authors explain.

B. burgdorferi was detected in the temporal right lobe, choroid plexus, occipital lobe and parietal lobe. B. garinii DNA was found in the basal ganglia and cerebellum.

Authors conclude:

  • “Our results confirmed the presence of two species of spirochetes from the B. burgdorferi sensu lato complex, B. garinii and B. burgdorferi s.s., in different areas of the human brain.”
  • “Importantly, the DNAs of the two spirochete species were detected in distinct areas of the brain; in no case did we find infection with both in the same brain region.”
  • “The detection of intact spirochetes in autopsy brain specimens of humans after extended treatments and those with a diverse history of disease manifestations, including widely recognized neurocognitive disorders, anxiety, depression, memory loss, brain atrophy, and progressive dementia, illustrates that persistent Borrelia infection can lead to a persistent disorder of the central nervous system (CNS) and the development of [Lyme neuroborreliosis].”
Related Articles:

How does Lyme disease affect the brain?
Autopsy finds Lyme disease spirochetes in patient with dementia
Does Lyme disease affect the brain?

References:
  1. Golovchenko M, Opelka J, Vancova M, Sehadova H, Kralikova V, Dobias M, Raska M, Krupka M, Sloupenska K, Rudenko N. Concurrent Infection of the Human Brain with Multiple Borrelia Species. Int J Mol Sci. 2023 Nov 29;24(23):16906. doi: 10.3390/ijms242316906. PMID: 38069228; PMCID: PMC10707132.

_______________

**Comment**

It’s all right here in purple crayon, yet crickets from public health and mainstream medicine.

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Borrelia in the brain is nothing new.  Research has shown this again and again. 
When is someone going to take it seriously?  
 
 
 

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Lyme, Psychological Aspects, research

Podcast: Medical Gaslighting, Human Rights, and Lyme Disease

https://www.lymedisease.org/podcast-gaslighting-lyme/

PODCAST: Medical gaslighting, human rights, and Lyme disease

By Fred Diamond

May 1, 2024

When I was researching my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I had no idea that medical gaslighting was something that persistent Lyme survivors had to commonly deal with.

I also had no idea that gaslighting was emblematic of the human rights challenges Lyme survivors have historically dealt with when seeking medical treatment.

I met hundreds of Lyme survivors who shared stories about being dismissed, mocked, and disbelieved by dozens of doctors.

Unfortunately, this gaslighting led to family members disbelieving that their loved ones had the disease, which led to further detachment, alienation, and suffering.

The patient experience

A peer-reviewed, international medical article was published in the journal Healthcare in 2023 called Medical Gaslighting and Lyme Disease: The Patient Experience. I interviewed the authors of the report, Jennifer Fagen, PhD, and Jeremy Shelton, PhD, both from Lamar University in Texas, and Human Rights Advocate Jenna Luché-Thayer, on two episodes of the Love, Hope, Lyme podcast.

The article states “Lyme disease is a recognized public health threat and is a designated notifiable disease. As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease have been relegated to the category of ‘contested illnesses’ which can lead to medical gaslighting.

“By analyzing results from an online survey of respondents with Lyme disease, 986 people, we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further respondents have had their blood tests and rashes discounted and were told that chronic Lyme disease simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences.”

Challenges with contested illnesses

According to Dr. Fagen, “Contested illnesses are conditions that lack cultural legitimacy as their nature and even their existence is often questioned. Any physical manifestations or symptoms may be deemed purely subjective as they lack objective biological markers. The result is that patients are in the unfortunate position of having to convince medical practitioners that they’re in need of medical attention, often leading to seeing many doctors before receiving a proper diagnosis.

“People with contested illnesses might not qualify for disability, despite their inability to work. Insurance may not cover their treatments and they could be denied the social recognition of their condition.”

She continued, “Despite the fact that there is such a high incidence of them in the US and internationally, and because they often have objective biological markers, such as blood tests and the EM or bullseye rash, it’s really quite counterintuitive that they are considered contested illnesses.”

Ignoring symptoms

The article discussed the wide range of gaslighting techniques used by doctors.

“The most common one by far was doctors just telling their patients, ‘You’re just overreacting to these symptoms,’ which is unfortunate because it doesn’t really address those symptoms at all. It essentially ignores them. Other reactions that we found that were common were implying that the symptoms were psychosomatic,” said Dr. Shelton.

He continued, “Many patients were told there’s just no such thing as chronic Lyme disease. A few people were told that it was fairly common that their symptoms were due actually to mental illness. It’s one thing to say it’s psychosomatic, but it’s a whole other category to say that you actually are suffering from some sort of mental illness.”

“Others were commonly told that their symptoms were due to stress. The common theme that you can see here is that doctors were trying to argue either the symptoms were due to some other cause besides Lyme disease, or that the symptoms were entirely fictitious and just in the person’s head, or they should just learn to live with those symptoms. Of course, that’s not what you want to hear when you go to a medical professional,” Dr. Shelton continued.

Lyme disease and human rights violations

Jenna Luché-Thayer put the findings in the article in the context of the human rights framework. On a special follow up episode of the podcast, she discussed the role of the World Health Organization (WHO) in developing medical codes that are linked directly to how insurance recognizes and reimburses their medical care and how governments track diseases.

She said, “If there is not a [WHO] code for a particular illness or disease or medical condition, it’s very hard to get the recognition, research, financial support, insurance support, Medicare, and Medicaid support to take care of the illness.”

Luché-Thayer formed a voluntary, nonprofit international organization that petitioned the World Health Organization and documented the science as well as the human rights violations related to Lyme disease. WHO expanded the codes to include multiple medical conditions that are caused by Lyme disease, including dementia, demyelinating conditions, Lyme carditis, and the ophthalmic complications from it.

“This is now part of the medical system that’s being integrated across the United States and other countries. People understand the importance of knowing their codes and bringing these codes to the attention of their medical providers. That means that the medical providers understand these codes have been validated, and it greatly helps to validate the multiple complications and chronic conditions disabling and potentially fatal complications from Lyme disease,” said Luché-Thayer.

Lyme survivors had their human rights compromised for decades. On the podcast, we discussed the extremes this might lead to.

“One of the key human rights is the highest attainable standard of health. If you are denied diagnosis and you are being denied treatment, clearly your health human rights are being violated,” she said. “If you are being told, as in a gaslighting situation, that you are not sick, when in fact you are infected with a bacteria that’s going throughout your body, your right to information is being denied. If you are a Lyme patient who has been told that not only are you not sick, but we think you need to go into psychiatric care, and you’re forced into a psychiatric care, then your personal security, which is also another human right, is being violated.”

Using the article for self-advocacy

Dr. Fagen said that one of the survey’s findings is that a patient’s positive blood test did not always influence how likely a doctor was to believe they have Lyme disease. On average, almost 14 doctors were seen prior to receiving a Lyme disease diagnosis. The article can be used as a tool for self-advocacy. (Download the article here.)

“It is important for patients to bring research with them to doctors’ appointments. This article not only contains a good deal of data from peer-reviewed medical journals that validate the existence of chronic Lyme disease, but it also provides data regarding the incidents and types of Lyme disease in our respondent pool. The latter can potentially encourage medical practitioners’ self-reflection if they are employing such techniques,” she said.

Dr. Fagen continued, “It’s also important for Lyme patients to know that these experiences are not uncommon, so they’d be less likely to doubt themselves. We’ve shared the research among medical doctors far and wide globally, including medical doctors who treat Lyme disease and other medical doctors who could perhaps benefit from some education about Lyme disease and Lyme patients’ experiences. We hope this accomplishes those goals.”

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook for your copy.

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Activism, Lyme, Psychological Aspects, research