The FDA has just released a briefing document for the December 12, 2024, Vaccines and Related Biological Products Advisory Committee (VRBPAC) Meeting titled, Considerations for Respiratory Syncytial Virus (RSV) Vaccine Safety in Pediatric Populations. The document revealed that, in July 2024, a Phase 1 trial assessing the safety, tolerability, and immunogenicity of two Moderna RSV vaccine candidates (mRNA-1365 and mRNA-1345) in infants aged 5 to 8 months was paused following reports offive severe to very severe cases of lower respiratory tract infection (LRTI) caused by RSV:
During the study, an imbalance in severe RSV cases was identified, based on a pre-specified study stopping criterion, among participants 5 months through <8 months of age who received the lower mRNA vaccine dose. In Cohorts 3 and 4, five (5) cases (12.5% of participants) of clinically significant (CS) severe/very severe RSV were identified in the vaccine groups (all of whom had received 1 or 2 doses of a 3-dose schedule), compared with one (1) case (5% of participants) in the placebo group. The percentage of participants with symptomatic RSV disease in Cohorts 3 and 4 who progressed to severe illness was 26.3% in the vaccine groups compared with 8.3% in the placebo group.
Of the six total severe cases (including one in the placebo group), five infants required hospitalization, and one required mechanical ventilation. (See link for article and tables)
According to Dr. Mary Talley Bowden, the RSV shots are also mRNA based. Further, and similarly to COVID shots, studies are not using mortality or even hospitalization as their end point but only reduction in symptoms. There were 12,000 adverse events. They only studied outcomes for 7 days.
“We are seeing the whole COVID shot fiasco all over again with RSV.” ~ Dr. Mary Talley Bowden
A leading cardiologist has warned that over 100 million Americans may now have irreversible heart damage after receiving Covid mRNA “vaccines.”
According to Dr. Thomas Levy, Covid vaccines are causing heart injury in at least 2.8% of people who receive the injections.
A minimum of 7 million Americans who took the Covid vaccine in 2021 now have severely damagedhearts, according to Dr. Levy.
However, the top doctor said that number is now likely to reach over 100 million people.
Dr. Levy is a renowned cardiologist and an attorney-at-law who also serves as the contributing editor for the Orthomolecular Medicine News Service.
Levy told MIT computer scientist and vaccine data expert Steve Kirsch that the spike protein’s effect on the heart is even worse than previously thought.
In an article, Kirsch, the founder of the Vaccine Safety Research Foundation (VSRF), highlighted the heart damage in vaccinated pilots.
As Slay News has previously reported, soaring heart damage among pilots was recently revealed in a change to Federal Aviation Administration (FAA) guidelines.
Back in 2022, the FAA quietly changed the electrocardiogram (ECG) parameters for pilots to accommodate those with cardiac injury.
The update suggests the injections are causing an unprecedented amount of pilots to fail their screening.
According to Kirsch, this range wasn’t widened by a little, it was a lot.“
The cardiac harm of course is not limited to pilots,” Kirsch explained in his article. (See link for article and videos)
Important quote:
Meanwhile, secret official data from Santa Clara County has exposed a shocking surge in all-cause deaths among residents who received Covid mRNA “vaccines.”
The spike in mortality rates was revealed in the county’s official statistics after the hidden records were unsealed by a Freedom of Information Act (FOIA) request.
Radiologist, oncologist, and cancer researcher, Dr. William Makis states COVID shots destroy the immune system and that 2 year olds are having heart attacks.
Twelfth Amendment to the Declaration under the PREP Act for COVID-19 Medical Countermeasures
On December 11, 2024, Secretary Becerra signed the 12th amendment to the declaration under the PREP Act for COVID-19 Medical Countermeasures. The Secretary issues this amendment pursuant to section 319F–3 of the Public Health Service Act to extend the duration of the Declaration to December 31, 2029, and to republish the Declaration in full.
A PREP Act declaration is specifically for the purpose of providing immunity from liability, and is different from, and not dependent on, other emergency declarations.
The end of the COVID-19 Public Health Emergency Declaration does not automatically terminate PREP Act coverage. To learn more, view our COVID-19 PREP Act FAQs.
Breaking: Former Trump Administration HHS Senior Advisor Provides Affidavit: “mRNA nanoparticle injections, are in fact biological and technological weapons of mass destruction”
Former Trump Administration Health and Human Services (HHS) Senior Advisor, and epidemiologist, Dr. Paul Alexander, provided an affidavit stating that mRNA nanoparticle injections are biological and technological weapons. Dr. Alexander, a Trump loyalist, provided the affidavit in a new case in the State of Florida.
Case # 2024-CA-001977 initiated by psychotherapist, Dr. Joseph Sansone is seeking an injunction to prohibit Governor Ron DeSantis and Attorney General Ashley Moody from allowing the continued distribution of COVID-19 and mRNA injections in the State of Florida because they are biological weapons. The complaint also seeks declaratory judgements that the COVID 19 injections and all mRNA nanoparticle injections violate Weapons of Mass Destruction § 790.166, Fla. Stat. (2023); Fraud § 817.034 Fla Stat. (2023); and Florida Medical Consent Law § 766.103 Fla Stat. (2023).
PODCAST: Navigating trauma to heal from chronic Lyme
By Fred Diamond
Chronic Lyme disease often brings trauma that can worsen symptoms and hinder healing.
In this week’s Love, Hope, Lyme podcast, I bring on Sami Kirschbaum, who helps patients heal through techniques like Brainspotting and nervous system regulation.
Sami focuses on the body’s physical response to trauma and uses methods to help patients release stored trauma and regain balance.
She also emphasizes the importance of community support in the healing process, offering a holistic approach to help Lyme survivors heal both emotionally and physically.
Every chronic Lyme survivor must navigate trauma, either induced from years of poor medical care or unresolved childhood trauma that is inhibiting healing and recovery.
When I was writing my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I was surprised to see the word come up in almost every conversations. It came to a head for me when I watched a webinar with Dr. Richard Horowitz. At the 59-minute mark, Dr. Horowitz said:
“By the way, if you don’t resolve your childhood trauma, it’ll be very difficult to heal.”
Chronic Lyme disease is not just a physical battle; it often comes with emotional and psychological trauma that can intensify symptoms and hinder the healing process.
Sami Kirschbaum, founder of the Lyme Resilience Collective, focuses on helping patients navigate and heal from these trauma responses through specialized techniques.
Drawing from her personal journey with Lyme disease and her training in trauma-based healing, Sami integrates Brainspotting, nervous system regulation, and community support to provide holistic care for those dealing with the emotional toll of chronic illness.
Trauma in the context of chronic illness
Many people think of trauma as the event itself, but Sami explains that trauma is really the body’s response to a stressful or overwhelming experience.
“When we go through traumatic experiences, a lot of people think that the event itself is a trauma,” she says. “But actually, what trauma is, is the person’s physical response to protect itself in a traumatic experience.”
This distinction is key for those with chronic Lyme disease, where trauma often exacerbates physical symptoms or reactivates dormant illness.
Sami’s approach to trauma healing starts with the body because, as she notes, “We know that trauma is actually held within the body. It’s not in our rational brain.”
The physical response to trauma can cause the body to remain in a heightened state of stress, which interferes with healing. This is why addressing trauma in both the mind and body is essential for those with chronic illnesses like Lyme disease.
Techniques for nervous system regulation
A central technique in Sami’s trauma healing practice is nervous system regulation. Chronic illness often puts patients in a perpetual state of stress, which she describes as being either “stuck-on” or “stuck-off.”
“The stuck-on state looks like panic, hypervigilance, high anxiety, running around, never feeling rested,” Sami explains. On the other hand, “stuck-off can look like lethargy, being depressed, shutting down, disassociating.”
Both extremes prevent the body from finding balance, or homeostasis, which is crucial for the healing process. “It’s important to have nervous system regulation so that we can stay in that flow and continue functioning appropriately through life.”
Sami offers nervous system regulation support groups as part of her services, teaching patients techniques to bring their nervous system back into balance. These techniques help patients navigate between the extremes of being stuck in high-alert states or shutting down completely.
Brainspotting: a key modality for trauma healing
One of the most powerful tools Sami uses for trauma healing is Brainspotting, a technique developed by Dr. David Grand.
“Brainspotting is a top trauma-healing modality,” Sami explains. It works by using the client’s visual field to access where the trauma is stored in the body.
Sami breaks it down further: “Where you look affects how you feel.” During Brainspotting sessions, the client focuses on a particular spot in their visual field while wearing headphones that deliver bilateral sound stimulation. This combination helps the brain and body work together to process trauma that is stored at a deeper level than the conscious mind can access.
Unlike more commonly known trauma therapies like EMDR (Eye Movement Desensitization and Reprocessing), Brainspotting allows for more flexibility and creativity.
“We trust that the person’s brain and body knows what it needs to heal itself, and the therapist, we hold the space for the client,” Sami says. The process is guided by the client’s own responses, allowing them to access and release stored trauma at their own pace.
Sami has been trained in Brainspotting for several years and credits it as one of the most effective tools for helping clients process trauma related to chronic Lyme disease. Brainspotting allows the patient to access trauma stored in the body and release it in a way that promotes both emotional and physical healing.
Trauma held in the body: healing from the inside out
A major component of Sami’s practice is helping clients recognize that trauma is stored in the body, not just in the mind. “We can’t have trauma processing from our neocortex, which is the higher part of our brain,” she explains.
This is why traditional talk therapy is often insufficient for healing trauma—especially for those with chronic illnesses.
“Trauma held in the body doesn’t have language, it has no sense of time,” Sami explains. “It just has a memory of protecting ourselves, and it is strong and sometimes gets embedded.”
This can make trauma responses seem exaggerated or irrational, but they are the body’s way of holding onto that survival mechanism. Techniques like Brainspotting are effective because they address trauma at this deep, body-based level.
Healing trauma collectively
Another important aspect of Sami’s work is the recognition that trauma and shame thrive in isolation, but healing can occur collectively. She emphasizes the importance of community in the healing process.
“Shame happens between people and it needs to be healed between people,” Sami says. By creating group settings for nervous system regulation and Brainspotting, she provides patients with a space where they can connect with others who understand their experiences.
“Coming together as a community is so important, which is why I do the group work as well as the individual work,” she explains. Chronic illness can be isolating, and many patients feel dismissed by family, friends, and even medical professionals. In Sami’s groups, patients find a safe space where they can share their experiences without fear of judgment or dismissal.
Moving beyond trauma
Sami’s ultimate goal is to help clients move beyond their trauma responses and reclaim their lives. This is why she focuses not just on trauma healing but also on cognitive rewiring and neuroplasticity.
“We can literally have neuroplasticity at our fingertips,” Sami says. “We can unlearn those programmings that we had, and then have the real adult mature brain come online and say, ‘Whoa, I am lovable.’”
For patients with chronic Lyme disease, this can mean letting go of limiting beliefs tied to their illness, such as feeling unworthy of love or incapable of leading a full life.
“Even though I can’t attend all these family events because I have chronic illness, I’m still worthy of love, I’m still worthy of belonging,” Sami says. This cognitive shift, combined with trauma healing, can help patients find emotional and physical relief.
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 or LinkedIn for your copy.
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**Comment**
Trauma is the six letter word nobody talks about; however, unless dealt with, a person will never truly heal and be whole.
Since Lyme is a brain infection, it has the ability to stir up emotions, thoughts, feelings, and memories like nothing else. It’s truly a mind-bender.
The potential role of pathogens, particularly vector-transmitted infectious agents, as a cause of psychosis has not been intensively investigated. We have reported a potential link between Bartonella spp. bacteremia and neuropsychiatric symptoms, including pediatric acute onset neuropsychiatric syndrome and schizophrenia. The purpose of this study was to further assess whether Bartonella spp. exposure or infection are associated with psychosis.
Methods
In a blinded manner, we assessed the presence of anti-Bartonella antibodies by indirect immunofluorescence assays (IFA), and infection by amplification of bacterial DNA from blood by quantitative polymerase chain reaction (qPCR), digital PCR (dPCR), and droplet digital PCR (ddPCR) in 116 participants. Participants were categorized into one of five groups: 1) controls unaffected by psychosis (n = 29); 2) prodromal participants (n = 16); 3) children or adolescents with psychosis (n = 7); 4) adults with psychosis (n = 44); and 5) relatives of a participant with psychosis (n = 20).
Results
There was no significant difference in Bartonella spp. IFA seroreactivity between adults with psychosis and adult controls unaffected by psychosis. There was a higher proportion of adults with psychosis who had Bartonella spp. DNA in the bloodstream (43.2%) compared to adult controls unaffected by psychosis (14.3%, p = 0.021). The Bartonella species was determined for 18 of the 31 bacteremic participants, including infection or co-infection with Bartonella henselae (11/18), Bartonella vinsonii subsp. berkhoffii (6/18), Bartonella quintana (2/18), Bartonella alsatica (1/18), and Bartonella rochalimae (1/18).
Discussion
In conjunction with other recent research, the results of this study provide justification for a large national or international multi-center study to determine if Bartonella spp. bacteremia is more prevalent in adults with psychosis compared to adults unaffected by psychosis. Expanding the investigation to include a range of vector-borne and other microbial infections with potential CNS effects would enhance knowledge on the relationship between psychosis and infection.
https://madisonarealymesupportgroup.com/2022/11/15/swamp-boy-a-teen-with-bartonella/In 2015, the day before Halloween, a mild-mannered teenage boy suddenly became delusional. He informed his parents that a demonic voice had begun speaking to him. Over the next weeks, his psychosis deepened: He believed he had transformed into his favorite comic book character, the Swamp Thing.
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 Lymeand the vastdriver 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 COVIDoutcomes. 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 feelright 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 onyour Fox interviewlast 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.
Tick-Borne Diseases & Associated Illnesses: National Community Engagement Initiative
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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.
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
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:
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.
Madison Area Lyme Support Group 