Archive for the ‘Lyme’ Category

Link Between Autoimmune Disease, Chronic Fatigue, and Hidden Infections

http://  Approx. 43 Min.

The Link Between Autoimmune Disease, Chronic Fatigue, And Hidden Infections

May 5, 2021

Pandemic aside, we’re seeing a national immune crisis. Autoimmune conditions continue to rise to record numbers, not to mention all of the chronic mystery illnesses that so many people struggle with daily. I’ve experienced this firsthand, along with the corresponding frustration and fear. There is an intriguing hypothesis about these conditions that I get into with my guests, Dana Parish and Dr. Steven Phillips, today on The Doctor’s Farmacy: underlying infections. Sneaky tick-borne diseases like Lyme, parasitic infections, and certain viruses can be extremely hard to diagnose. Meanwhile, they can contribute to an immune system collapse and other life-threatening breakdowns throughout the entire body.

Dr. Phillips and Dana Parish share their incredible stories of overcoming chronic stealth infections after numerous doctors couldn’t help them. Lyme was a common factor for both of them, while Dr. Phillips was also able to diagnose Bartonella in Dana. At their worst, they both had extremely limited mobility and felt their lives were at risk. Dana shares that in addition to recovering her mobility and strength, treating these infections also had a profound impact on her mental health by reducing her anxiety and depression. Dr. Phillips’ journey not only forced him to be his own detective to find healing, but also showed him how much discordance there is among conventional medicine in treating diseases like Lyme.

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  1. The CARES Act, which provides hospitals with bonus incentive payments for all things related to COVID-19 (testing, diagnosing, admitting to hospital, use of remdesivir and ventilators, reporting COVID-19 deaths, and vaccinations)
  2. Waivers of customary and long-standing patient rights by the Centers for Medicare and Medicaid Services (CMS) which allows hospitals to “violate the rights of patients or their surrogates with regard to medical record access, to have patient visitation, and to be free from seclusion.  This simply means COVID patients are literally prisoners in the hospital, are isolated, and have no say in their treatment.

Hospital payments include:

  • A “free” required PCR test in the Emergency Room or upon admission for every patient, with government-paid fee to hospital.
  • Added bonus payment for each positive COVID-19 diagnosis.
  • Another bonus for a COVID-19 admission to the hospital.
  • A 20 percent “boost” bonus payment from Medicare on the entire hospital bill for use of remdesivir instead of medicines such as Ivermectin.
  • Another and larger bonus payment to the hospital if a COVID-19 patient is mechanically ventilated.
  • More money to the hospital if cause of death is listed as COVID-19, even if patient did not die directly of COVID-19.
  • A COVID-19 diagnosis also provides extra payments to coroners.

CMS implemented “value-based” payment programs that track data such as how many workers at a healthcare facility receive a COVID-19 vaccine. Now we see why many hospitals implemented COVID-19 vaccine mandates. They are paid more.  Source

 

Category:

Bartonella, Lyme

“Deep Places” Explores One Man’s Lyme Fight

https://www.lymedisease.org/deep-places-ross-douthat-lyme/

TOUCHED BY LYME: “Deep Places” explores one man’s Lyme fight

Dorothy Kupcha Leland

Dec. 1, 2021

Ross Douthat was a busy man.

In addition to his regular opinion column in the New York Times, he wrote books, gave speeches, traveled, interviewed people, and was often interviewed himself.

In 2015, he and his wife had two kids and another on the way. They decided to leave Washington DC and relocate to Connecticut, where they had both grown up and still had family.

They found a rambling old country house that they fell in love with. After walking through the dwelling and briefly strolling around the property surrounding it, they made an offer which was accepted. Then, they returned to DC to prepare for the move.

And that’s when Douthat’s life changed dramatically.

It started with a stiff neck and an enlarged lymph node. (“Nothing to worry about,” said an internist.) It progressed to migrating pain that moved from his head to his spine to his chest to his arms and legs. (“Maybe drink more Gatorade–for the electrolytes,” suggested a neurologist.) Other specialists prescribed sleeping pills and antidepressants. (“Stress,” they declared. “Too much going on in your life.”)

The reason or the symptom?

“I did feel stressed,” Douthat remembers. “But the illness felt like the reason rather than the symptom.”

He was tested for Lyme disease a couple of times, with negative results.

Meanwhile, the bizarre symptoms continued. Before he and his family left Washington, crushing chest pain sent him to the emergency room on two different occasions. Doctors there found nothing wrong with him. He followed up with various specialists, who theorized that his symptoms were psychosomatic.

As one infectious diseases doctor put it: “Look, I know it’s hard to see, but you should feel happy. It’s a good thing not to have a disease, you know…. And, if you need a mental health referral, we can definitely help with that.”

Caught in the middle

In his recently published book, The Deep Places: A Memoir of Illness and Discovery, Douthat writes about being caught between what he was feeling in his body and what the doctors confidently proclaimed didn’t exist.

By this point, I was deep into self-doubt about the reality of my experience. On the one hand, there was the pain, the burning, the vibrations, the feeling of invasion; I knew I’d never felt anything like this before. But what were mere feelings set against the certainties of so many doctors, the repeated negative readings of my blood?

The family moved to the big country house, Douthat’s condition continued to deteriorate, and he consulted new doctors in Connecticut.

First stop was a psychiatrist, who listened, took notes, and then surprised Douthat by saying, “I’m pretty sure you have a tick-borne disease, Ross.” (Had a tick nailed him during his initial inspection of the Connecticut property? The timing certainly seemed right.)

This sent him in search of Lyme specialists and to dig even deeper into learning about the illness: the problematic testing, difficulty of diagnosis, controversial treatments, and how mainstream medicine looks at Lyme with a mixture of disdain and denial.

Frustrating illogic

He notes the frustrating illogic that Lyme patients face:

If you were a positive case with lingering, persistent symptoms after treatment, then your Lyme officially belonged to the past, and you no longer had a CDC-recognized disease. Instead, you had something called Post-Treatment Lyme Disease Syndrome (PTLDS), and the CDC’s advice for anyone suffering through it was to basically keep on suffering.

And he wonders:

If someone has an illness, takes a drug to treat it, and afterward retains exactly the same symptoms, why wouldn’t you assume that they have simply continued to have the same disease? Why invent a mysterious “post-disease syndrome” to explain what is experienced by the patient as one continuous sickness?

Douthat consulted different Lyme specialists that prescribed various antibiotic combinations. Some helped in some ways—but nothing got to the heart of the matter. He was still desperately ill.

At that point, Douthat started branching out into more alternative realms such as muscle testing, magnets, and a Rife machine—along with continuous heavy-duty prayer—and by the close of 2019, he was doing much better. “2020, I told myself, is going to be a good year.”

Then he and other family members got nasty cases of COVID. And he writes:

The coronavirus era soon came to feel like a shattered mirror of the tick-borne epidemic and its controversies, with different pieces of the Lyme wars reflected and refracted in different aspects of the world-wide COVID crisis.

In the following excerpt of The Deep Places, Douthat expands on this comparison between Lyme disease and COVID-19.  (See top link for book excerpt)

Prominent deniers of chronic Lyme

Douthat recently published three articles in the New York Times that drew on the experiences chronicled in this book.

How I Became a Sick Person (Oct. 24)

How I Became a Science Experiment (Oct. 31) and

How I Became Extremely Open-Minded (Nov. 7)

On November 27, the newspaper published seven letters to the editor in response to Douthat’s trio of articles. Three of the letter writers are prominent IDSA members, all well known deniers of chronic Lyme. Another one consults for Big Pharma. Any guesses about what those guys had to say about Douthat’s columns?

I’ve read and reviewed a lot of books about Lyme disease. Douthat’s book is one of the best. I highly recommend it.  Click here for information about ordering this book.

Readers react to Ross Douthat’s account of his health travails and the exotic treatments he tried.

Category:

Activism, Lyme, Uncategorized

Lyme Can Affect the Heart in Complicated Ways

https://www.lymedisease.org/baranchuk-lyme-heart-complications/

Lyme disease can affect the heart in complicated ways

By Dr. Adrian Baranchuk, Dec. 3, 2021

Lyme disease is a tick-borne infection caused by bacteria known as Borrelia burgdorferi. Lyme carditis is an early manifestation of Lyme disease that can occur two to six weeks after the tick bite.

Approximately five to 10 per cent of patients presenting to family doctors’ clinics or emergency departments with symptoms of Lyme disease may develop Lyme carditis.

The prevalence of Lyme disease in Canada continues to increase year after year. Nearly 2,700 people were diagnosed with Lyme disease in 2019, but the number of reported cases may not reflect the actual number of cases.

How Lyme carditis affects the heart

Lyme carditis most commonly manifests as high-degree atrioventricular block: a complete shut-down of the electrical system of the heart that can evolve rapidly over minutes, hours or days, producing severe symptoms like fainting, extreme dizziness or sudden death.

Less frequently, other serious cardiovascular manifestations may be present, such as:

  • sinus node disease, marked by alterations to the heart’s “motor” or natural pacemaker,
  • atrial fibrillation, which is a disorganization of the cardiac rhythm that increases the risk of stroke,
  • bundle branch blocks, or lesions in the distal cables of the heart that can interrupt electrical impulses, and
  • myocarditis, pericarditis or endocarditis, which are different degrees of inflammation of the layers of the cardiac walls.

Some of these manifestations can be so severe that total cardiac dysfunction may rapidly occur, and the patient may die despite medical efforts. Sometimes a heart transplant is the only option.

Diagnosing and treating Lyme carditis

The initial symptoms of Lyme disease can be mistaken for other common infections or allergic reactions. Delayed diagnosis and delayed initiation of proper treatment can lead to serious Lyme disease presentations including Lyme carditis in all its forms.

We need ongoing education at all levels (medical and nursing schools, community, governments) to close the gap in knowledge and ensure all participants in the health-care system aware of this preventable condition.

The good news is that prompt diagnosis and appropriate antibiotic therapy leads to a much better prognosis. Lyme carditis responds very effectively to treatment, completely eliminating the cardiac manifestations, with a very favourable prognosis in both short- and long-term followup. We now know that when antibiotics are used according to guidelines, the prognosis two years after the infection reveals no residual disease in the heart.

It is important to remember that most heart conduction abnormalities caused by Lyme carditis resolve with appropriate antibiotic therapy without requiring the implantation of permanent pacemakers. As most patients presenting with Lyme carditis are young and otherwise healthy, any medical strategy that could prevent the need to implant a pacemaker for the rest of their lives is welcomed.

Confirming Lyme disease in the age of COVID-19

The current COVID-19 pandemic is posing a new challenge in the diagnosis of Lyme disease. The two conditions have a lot of overlapping symptoms, such as fever, malaise, generalized pain and lack of energy. During these times, it’s advisable to rule out COVID-19 first before embarking on any other test.

Asking focused questions about personal lifestyle may help guiding the diagnosis of Lyme disease. Some key questions include:

Skin examinations and ECGs

A bull’s-eye-shaped rash is a characteristic symptom of Lyme disease, but it isn’t present in all patients. Some have a less defined rash.

Thorough dermatological examination can clarify difficult cases. This happened in my clinic recently, when a nurse practitioner decided to run a full skin examination and discovered typical bull’s-eye rashes on the patient’s back.

Once the diagnosis is suspected, cardiovascular symptoms such as dizziness, palpitations, fainting or near fainting, chest pain and shortness of breath should be investigated. If the patient reports any of these symptoms, along with any other factors suggesting Lyme disease, a 12-lead ECG (the simple and inexpensive electrocardiogram) should be performed.

Quite recently, a team from the United States did 12-lead ECG to a large series of pediatric patients presenting to the emergency department with high-suspicion of Lyme disease, and discovered that nearly 30 per cent of them had some conduction disturbance. Any evidence of electrical disturbance should prompt admission in hospital for a course of intravenous antibiotics while waiting the results of serological tests.

Suspicious Index in Lyme Carditis

From the other perspective, any patient presenting with unexpected high-degree atrioventricular block (full electrical shut down of the electrical system of the heart), the way to test for Lyme carditis is by running a risk score called SILC (Suspicious Index in Lyme Carditis), which was developed at Queen’s University and is now used worldwide.

SILC score is based on the risk factor acronym COSTAR (Constitutional symptoms, Outdoor activities/endemic region, Sex male, Tick bite, Age < 50, Rash), which may help in determining the likelihood of early Lyme carditis.

We need to keep teaching and learning about Lyme carditis. In addition to ongoing education, curricula in medical and nursing schools should be updated immediately to be sure that all new health-care providers are trained in the rapid recognition of this condition. When to order serological tests, how to check for cardiovascular symptoms and the value of the 12-lead ECG are all important steps in the management of Lyme carditis.

The effort to eradicate Lyme disease should involve physicians and nurses, patients and families, rigorous science and political decisions for sound policy implementation.The Conversation

Dr. Adrian Baranchuk is a cardiologist and Professor of Medicine, Queen’s University, Ontario Canada. This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Category:

Heart Issues, Lyme, Testing

Adjunct Therapies That Have Helped With My Tick-Borne Illneses

https://www.globallymealliance.org/blog/adjunct-therapies-that-have-helped-with-my-tick-borne-illnesses

Adjunct Therapies That Have Helped with My Tick-Borne Illnesses

by Jennifer Crystal on November 30, 2021

<img src=”https://www.globallymealliance.org/hubfs/Gala%20PR%20Image-7%20copy%205.jpg&#8221; alt=”Adjunct Therapies That Have Helped with My Tick-Borne Illnesses“>
Jen Crystal discusses the adjunct therapies that helped her in her Lyme disease journey.

Patients write to me every day asking what helped me achieve remission from tick-borne illness. I wish there was a magic answer I could give them, but since every single case is different, there is no set protocol. What worked for me might not work for someone else. Moreover, what worked for me five years ago is not what works for me now. Each case changes over time as spirochetes are killed off and symptoms improve. My Lyme Literate Medical Doctor (LLMD) is always fine-tuning my protocol.

That said, there are several adjunct therapies that have worked in conjunction with my ever-changing protocol of medication and supplements. I call these adjunct or complementary therapies because they supported, but did not replace, my medical protocol. These therapies would not have worked alone, because first and foremost I needed to treat the infections of Lyme disease, babesiosis, ehrlichiosis, and possible bartonella. In fact, before I was accurately diagnosed with these tick-borne illnesses, I tried some alternative therapies and they did not help, because the underlying infections were too severe. Once I started appropriate treatment, the following therapies helped me heal:

Integrative Manual Therapy

Developed by Sharon Giammatteo, Ph.D., this hands-on technique uses light touch to facilitate healing. The therapy combines cranial therapy and neurofascial processing. In her book Body Wisdom: Light Touch for Optimal Health, Giammatteo explains that cranial therapy is “a manual approach to correcting problems of the cranium, as well as the tissues and structures within in. Cranial therapy works by exerting a gentle force on the head and the body. The force decompresses dysfunctional areas and facilitates proper biological rhythms.”[1]

Don’t be alarmed by the word “force”; it’s simply someone gently placing a hand on your head or body, making barely perceptible movements. The technique is lighter than massage. When I’m struggling with brain fog or other symptoms of Lyme brain, my integrative manual therapist might place one hand on my forehead and one hand on my lower back, to enable drainage. This is part of neurofascial processing, which is just placing hands on different parts of the body to get systems working in sync.

The great part about Integrative Manual Therapy is that a lot of it can be done at home, either by yourself or with the help of someone else. Techniques are outlined in Giammatteo’s book. You can also work with a trained facilitator. Some D.O.’s (Doctors of Osteopathic Medicine) do manual therapy, and some physical therapists do it. This means these appointments might be covered by insurance. You can also pay out-of-pocket for a private practitioner. At the height of my illnesses, I did Integrative Manual Therapy twice a week; now I do it twice a month.

Neurofeedback

You may have heard of biofeedback, which uses the body’s own feedback to regulate systems. Neurofeedback works in the same way, except on the brain instead of the body. This non-invasive technique uses your brain’s own feedback to help it work optimally, whether that is being able to rest, thinking more clearly, or having less intrusive thoughts.

During neurofeedback appointments, I sit in a comfortable lounge chair. The practitioner affixes small sensors on my head and ears. These sensors are connected to a computer that receives feedback from my brain, and then relays information back to my brain that helps it work better. During this process, I watch kaleidoscope-style images on a screen (though it’s fine to close your eyes), and listen to soft music. Sometimes as certain feedback is being sent, the music skips. That’s all I notice during the entire session. Otherwise I just sit and relax, and let my brain do its work.

I started neurofeedback when I saw a sleep specialist for insomnia. In conjunction with sleep medication, neurofeedback helped my brain retrain itself to turn off for rest. It toned down, though did not eliminate, my hallucinogenic nightmares. It also helped me to be able to fall asleep for a nap during the day, which my exhausted body desperately needed.

There are different types of neurofeedback. Some work on just one part of your brain at a time, while others work on the whole brain. I do NeurOptimal, which helps the whole brain at once. My practitioner thinks that working on only one part of my brain at a time might actually exacerbate, not help, some of my neurological issues.

Some sleep specialists do neurofeedback, which can be covered by insurance. There are also private practitioners that you can find through NeurOptimal. When my insomnia was raging, I did neurofeedback three times a week. Now that I am in remission, I do it once a month.

Physical Therapy

Physical therapy is an important way to rebuild muscle strength and stamina—when you are ready. I made the mistake of starting physical therapy too early in my treatment, and paid for it. Because infections were ravaging my body, exertion only made them worse. Before my babesiosis was adequately treated, thirty seconds on a stationary bike gave me a migraine and sent me straight back to bed.

When I was bedridden, people used to say to me, “You should get up and go for a walk. It’ll make you feel better.” Just walking to the end of the driveway made me feel much, much worse. You know your body best. If you had the flu, you would not go for a walk. You would wait until you felt better. I had to wait until my infections were cleared up enough before I could do physical therapy consistently, and have it make a positive difference. Talk with your LLMD about when physical therapy would be appropriate for you.

Make sure your physical therapist understands the way your illnesses impact your body, and has you go at a slow pace. You likely won’t be able to do a typical graded physical therapy program where you steadily increase time and weights. Instead, you’ll make progress, take some down turns, then make progress again. When I first started physical therapy, all I did were some gentle stretches and slow manipulations with my fingers and toes. It took months to work up to twelve minutes on a stationary bike. I added weights very, very slowly. Now, after regaining strength and learning to pace myself, I am able to ski, walk, paddleboard, kayak, and swim. (For more on my slow but steady physical therapy, see my poem “Never Say Never”).

Talk Therapy

Being sick, especially for an extended period of time, can take an emotional toll. Moreover, Lyme disease can cause anxiety and depression. Your LLMD or a psychiatrist may prescribe medication to help your mood, but it’s also really helpful to talk about your feelings with an objective professional. You want someone who believes your illness and believes in you. Someone who will allow you to vent on the tough days and, more importantly, give you some coping skills to handle those hard times. My own therapist also helped me examine relationships and patterns from my past that informed my response to illness. She helped me to accept and love my illnesses, and myself. By encouraging me to be gentle with myself, she helped me not to wallow in the past, but to learn from it so I could move forward.

These are the therapies that have helped me. It is not an exclusive or exhaustive list; other therapies that I haven’t tried, like reiki, light massage, rife machines, and hyperbaric oxygen chambers, may be helpful to other patients. I encourage you to discuss possible adjunct therapies with your LLMD to determine which would be best for you.

[1] Giammatteo, Sharon, Ph.D. Body Wisdom: Light Touch for Optimal Health. Berkeley, California: North Atlantic Books, 2002 (21).

Jennifer Crystal

Writer

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

 

Category:

Babesia, Bartonella, Ehrlichiosis, Lyme, Psychological Aspects, Treatment

Study: Borrelia burgdorferi Uses Evasion to Persist in Different Human Cell Lines

https://www.frontiersin.org/articles/10.3389/fmicb.2021.711291/full

Distinctive Evasion Mechanisms to Allow Persistence of Borrelia burgdorferi in Different Human Cell Lines

Kati Karvonen1*, Jonna Nykky1, Varpu Marjomäki1 and Leona Gilbert2*
  • 1Department of Biological and Environmental Science, Nanoscience Center, University of Jyväskylä, Jyväskylä, Finland
  • 2Te?ted Oy Ltd., Jyväskylä, Finland

Lyme borreliosis is a multisystemic disease caused by the pleomorphic bacteria of the Borrelia burgdorferi sensu lato complex. The exact mechanisms for the infection to progress into a prolonged sequelae of the disease are currently unknown, although immune evasion and persistence of the bacteria in the host are thought to be major contributors. The current study investigated B. burgdorferi infection processes in two human cell lines, both non-immune and non-phagocytic, to further understand the mechanisms of infection of this bacterium. By utilizing light, confocal, helium ion, and transmission electron microscopy, borrelial infection of chondrosarcoma (SW1353) and dermal fibroblast (BJ) cells were examined from an early 30-min time point to a late 9-days post-infection. Host cell invasion, viability of both the host and B. burgdorferi, as well as, co-localization with lysosomes and the presence of different borrelial pleomorphic forms were analyzed. The results demonstrated differences of infection between the cell lines starting from early entry as B. burgdorferi invaded BJ cells in coiled forms with less pronounced host cell extensions, whereas in SW1353 cells, micropodial interactions with spirochetes were always seen. Moreover, infection of BJ cells increased in a dose dependent manner throughout the examined 9 days, while the percentage of infection, although dose dependent, decreased in SW1353 cells after reaching a peak at 48 h. Furthermore, blebs, round body and damaged B. burgdorferi forms, were mostly observed from the infected SW1353 cells, while spirochetes dominated in BJ cells. Both infected host cell lines grew and remained viable after 9 day post-infection. Although damaged forms were noticed in both cell lines, co-localization with lysosomes was low in both cell lines, especially in BJ cells. The invasion of non-phagocytic cells and the lack of cytopathic effects onto the host cells by B. burgdorferi indicated one mechanism of immune evasion for the bacteria. The differences in attachment, pleomorphic form expressions, and the lack of lysosomal involvement between the infected host cells likely explain the ability of a bacterium to adapt to different environments, as well as, a strategy for persistence inside a host.

(See link for full article)

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Category:

Lyme, research