Bartenderbonnie
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Dr Jemsek’s lecture summary; (Copy and paste)
Slide 1. Acute Versus Chronic Disease
Early in my work with patients with chronic symptoms of Lyme disease, I recognized that the term Lyme disease was inadequate. It referred to an acute, curable infection, a concept solidified in medical textbooks in the 1980s.
However, the patients I was seeing were not acutely ill, and they were not getting better with standard treatments.
Why fight institutional knowledge?
Let’s grant that Lyme disease is an acute, curable disease, for which the institutional treatment guidelines suffice. However, Lyme borreliosis complex (LBC), which I’ll describe shortly, is a poorly understood chronic condition that requires specialized management.
Slide 2. LBC Pathophysiology
I characterize Lyme borreliosis complex (LBC) as: polymicrobial, immunosuppressive, multisystemic, and neurologically multi-compartmental.
What do I mean by that?
A. LBC is a polymicrobial disease.
There are at least six major stealth pathogens involved in LBC, including multiple Borrelia strains and life-forms. Coinfection with Babesia species is essential to clinical expression of LBC.
Babesia species are essential to the clinical expression of LBC; they are, in fact, the linchpin for understanding the full scope of this illness. During physical examinations of my sickest patients, I observed a number of Babesia’s tell-tale signs, such as an enlarged liver and spleen—signs that often reappeared during a relapse, confirming my belief in Babesia’s central role in the clinical manifestation of LBC.
B. LBC is an immune evasive and immunosuppressive disease.
LBC involves infecting organisms with unique survival mechanisms that exhaust the immune system. Patients’ immunoglobulin levels and lymphocyte levels (CD4 and CD8) are often low.
I’ve learned that the pathogens involved in LBC do not overwhelm the immune system in a frontal assault; they play a slow, insidious game. They escape detection, they hide, and over time, they deplete the immune system, leaving the patient vulnerable and chronically inflamed.
C. LBC is a multisystemic disease.
Borrelia and co-pathogens are capable of invading and killing virtually every host cell line. Tropism of the infecting organisms dictates the particular expression of the disease.
LBC is a multisystemic disease with an incredible and frightening reach throughout the human body. It can invade fibroblasts, myocardial cells, endothelial cells. It even invades the very cells of our neurological and immune systems. In short, the infection can take root in any organ or tissue—which explains the vast and varied symptoms patients experience.
D. LBC is a multi-compartmental neurologic disease.
Pathogens infect neurons and glial cells, contributing to neuropathic symptoms. Borrelia can invade and disrupt any part of our nervous system, from the brain to the peripheral nerves.
Scientific studies, such as Livengood and Gilmore’s in 2006, corroborate what I saw in my practice for years: The Borrelia spirochete is capable of invading and killing virtually every type of cell in our nervous system, including neurons and glial support cells.
Slide 3. LBC Diagnostic Triad
Through twenty-five years of patient observation, I organized the disease’s wide range of symptoms into a clinical triad. Due to lack of reliable laboratory diagnostic tools, I established an LBC diagnosis on clinical findings, namely chronic, relapsing, and otherwise unexplained:
Encephalopathy: damage or disease affecting the brain Arthritis/enthesopathy: inflammation of joints/connective tissue (tendons and ligaments) Polyneuropathy/mononeuritis multiplex: damage to multiple peripheral nerves.
Let’s open it up:
1. Encephalopathy involves one or more of the following symptoms:
Inflammation of the brain: headaches, hallucinations, seizures, jerky movement, loss of consciousness Sleep disturbances Mood alterations: irritability, depression Cognitive changes: memory loss, confusion, poor attention span.
The first part of this triad is encephalopathy, or inflammation of the brain. Patients describe crushing headaches, visual and auditory hallucinations, seizures, and jerky, uncontrolled movements. Their sleep is profoundly disturbed.
The cognitive and emotional toll of encephalopathy is immense. I have seen brilliant, articulate individuals struggle to find words, read a page in a book, or comprehend a simple conversation. This cognitive fog erodes their ability to make new friends, maintain relationships, and function in their careers.
The mood alterations caused by inflammation of the brain are equally severe. To describe the different layers of emotional affectation, I used a metaphor with patients: the “Lyme mood hotel.” I’d tell them: “Every single one of my patients checks into the first floor: irritability. The floors above contain escalating levels of emotional distress, culminating in the fourth floor: raging psychosis. In between, I have seen every shade of anxiety, depression, and emotional lability.”
2. Arthritis and/or enthesopathy involves one or more of the following symptoms:
Arthritic symptoms: joint pain, stiffness, swelling, redness, decreased range of motion Periarticular symptoms or enthesopathy: cracking/popping sounds, tenderness, bruising, weakness Symptoms can be inflammatory and noninflammatory Symptoms are generally migratory
LBC resembles or “triggers” several rheumatologic syndromes Patients report severe joint pain, swelling, stiffness, and a decreased range of motion. However, a hallmark of LBC is that the pain is often disproportionate to the visible signs. A patient might tell me their joint “hurts like the dickens,” but on examination, I might not see significant swelling or redness.
I found that it is often the tendons and ligaments that are inflamed—a condition called enthesopathy—as much as the joint itself. The pain is often migratory, moving from one joint to another, a classic but not universal feature.
3. Polyneuropathy or mononeuritis multiplex involves one or more of the following symptoms:
Pain, numbness, tingling, burning pain Weakness in one part of the body, difficulty controlling movement, partial paralysis Plexitis Ganglionitis
This set of symptoms stems from damage to the peripheral nerves. Patients describe a range of agonizing sensations: sharp or burning pain; numbness; tingling; and a pins-and-needles feeling.
When I performed a simple bedside test for sensation, most patients showed a loss of sensation at the ankle. That’s because the longest nerves, running from the spinal cord to the feet, are often the first to be affected. Patients report feeling unsteady on their feet. This condition is progressive, affecting the nerve roots exiting the spinal cord, causing weakness, loss of motor control, and even partial paralysis in any part of the body.
Inflammation of the nerve ganglia and plexi can lead to dysfunction in the bladder, bowels, and genitalia, sending patients on a futile journey to urologists and gastroenterologists who are unaware of the underlying neurological cause.
Slide 4. Maslow’s Hierarchy of Needs
This five-tier motivational theory proposed by Abraham Maslow in 1943 depicts human needs arranged as a pyramid.
Physiological needs: Basic survival requirements like food, water, shelter, and sleep. Safety needs: Security, stability, health, financial well-being. Love and belonging needs: Social connections, friendship, family, intimacy. Esteem needs: Self-respect, recognition, competence, appreciation. Self-actualization needs: Personal growth, fulfilling potential, self-fulfillment.
LBC is a state of chronic multisystemic inflammation, perhaps otherwise seen only in the final stages of a terminal illness—but ongoing. Over time, it erodes everything: It takes away people’s health, stability, ability to communicate and connect with loved ones, and their confidence.
I have witnessed so many successful people who were once at the top of this pyramid, operating at a high level of competence and self-respect, become impaired. Patients find themselves stuck at the bottom of the pyramid, struggling to meet their most basic needs.
Slide 5. The Jemsek Protocol The Jemsek Protocol® for LBC involves three phases fashioned specifically to combat the infecting organisms. While the approach to treatment is structured, it is always individualized and frequently adjusted. There can be no cookie-cutter approach; the disease is too diverse.
I. Stabilization
Focused on the evaluation and subsequent stabilization of the patient Designed to reduce what I call the inflammatory quotient Reduces CNS and PNS neuroirritability The first step, stabilization, is critical. We’re dealing with a body that is chronically inflamed. It’s not a fair fight. So my initial focus is on reducing inflammation.
II. Treatment
Selective targeting of pathogens with strategic use of herbals and antimicrobials and “pulsing” methods. Gradually allows for immune reconstitution to occur. Coordinated and synchronized degradation of biofilm.
The treatment phase involves the strategic use of antimicrobials, both pharmacological and herbal, to target the various pathogens involved. The Jemsek Protocol® uses a pulsing strategy—treating for a few days at a time rather than continuously—because it is targeting slow-growing organisms. This approach allows time for detoxification between dosing days.
The most important goal of the Jemsek Protocol® is to facilitate immune reconstitution. This involves, on dosing days, a coordinated and synchronized degradation of biofilm—the protective shields these pathogens create.
III. Maintenance and Recovery
Neurological and immunological recovery and healing Changes in lifestyle and control of essential life functions (ELF) Tapering and discontinuation of neurotropic and psychotropic medications.
After the main course of treatment, the maintenance and recovery stage is a long one: fifteen to eighteen months, in the best of cases. But the reward is immense. This phase focuses on low-inflammatory lifestyle changes and gradually withdrawing the neurotropic and psychotropic medications that may have been necessary to manage severe, debilitating symptoms.
Throughout, the key is addressing the patient’s POEMS:
P → Pain management O → Other roadblocks: address comorbidities, social support, etc. E → Endocrine and metabolic issues M → Mood and psychiatric concerns S → Sleep quality To guide my approach during treatment, I developed the acronym POEMS.
P is for pain management; the pain can be so severe that no healing can occur until it is adequately controlled. O is for attention to other roadblocks—a catch-all that primarily refers to comorbidities and the patient’s social support system. E is for endocrine and metabolic issues management—such as low cortisol, which can cause a crisis. M is for addressing mood and psychiatric issues; the patient must be stable enough to participate in their own care. S is for everyone’s favorite, sleep; without restorative sleep, the body cannot heal.
Slide 6. Self-Help What can you do to support yourself at home?
I strongly believe in empowering patients with self-help strategies, as access to quality care for LBC is tragically rare. But with or without access to therapy, patients can reduce the inflammatory quotient:
Supplementation Anti-inflammatory “cocktail”: fish oil, curcumin, vitamin C Magnesium Dietary choices
Cut out gluten and/or other offending food groups Detoxification: sweating
Passive: Warm salt bath, sauna, blanket
Active: Stretching, aerobic exercise
I advise a simple anti-inflammatory cocktail that anyone can take: fish oil, curcumin, and vitamin C. I also recommend magnesium for nerve pain and restlessness. For diet, the most important step is to cut out gluten, which is pro-inflammatory in the vast majority of LBC patients. Detoxification is also crucial. I encourage patients to sweat, whether through a warm salt bath, sauna, or gentle exercise. This mobilizes the lymphatic system and helps the body expel toxins.
In addition, never forget that having support is crucial!
Epilogue: The Ongoing Battle
The emotional and cognitive components of this illness are immense. Much like a patient diagnosed with a malignancy, an LBC patient goes through the classic stages of grief: denial, anger, bargaining, depression. You may sometimes feel hopeless. You may have been beaten to a pulp by the disease and the medical system, but don’t give up! Keep searching for a way to support yourself—and fight the good fight!
Question & Answer Session
Question 1: Retreating Relapses
Morven-May MacCallum, LDUK (MM): If after a significant period in remission from Lyme disease, a treated patient should feel the onset of new symptoms due to a weakened immune system, how would you treat the relapse with antibiotics? Is it likely that it will be more difficult to treat the patient?
Dr. Jemsek: Relapses are common in this illness, even with the best efforts. The immune system has been so diminished that it takes a long time, perhaps three to five years, to fully reconstitute. And I have found that relapses are often driven by the return of Babesia. Retreatment is likely easier than the first time around. However, it’s important for the patient to understand the specific triggers that may have led to a relapse and try to avoid them.
Question 2: “Bookending” Babesia
MM: You’ve mentioned the idea of returning to Babesia at the very end of treatment (“bookending” Babesia) to attain a more lasting remission. What are your thoughts now?
Dr. J: Years ago, I noticed that even after successful treatment, 30 to 40 percent of patients would relapse within three months to a year. Physical signs of relapse were, particularly, enlarged liver and spleen, one of the hallmarks of Babesia infection.
My solution was to implement a Babesia retreatment protocol: After patients completed the full Jemsek Protocol®, I would give them three to four months of freedom from most medications—and then retreat them with two additional months of the Babesia program. The results were impressive. In at least one hundred people who underwent this retreatment approach, I didn’t see a single relapse. It was a huge step forward.
Question 3: Monthly Cycles
MM: It seems that symptoms get a lot worse before a woman’s monthly cycle. Is this common, and why is it so?
Dr. J: Yes, it’s very common. It’s to be expected and is due to the relationship between hormones and inflammation (estrogen/progesterone cycles). To address this issue, my primary approach was to refer patients to their gynecologist for continuous birth control pills (if not contraindicated) to prevent ovulation for at least three months at a time, which made a big difference.
An alternative approach, when birth control is contraindicated (about 30 percent of cases), I used anti-inflammatories—not paracetamol but instead NSAIDs (including naproxen and ibuprofen) and supplements like and fish oil—and avoided cycling anti-infective therapy during that time of the month.
Question 4: Advice for Caregivers
MM: What is the single piece of advice you might give a caregiver with a family member suffering from chronic Lyme?
Dr. J: When treating patients with LBC, having a dedicated caregiver is absolutely crucial—in fact, this was a prerequisite for receiving care at the Jemsek Specialty Clinic. Patients had to have a support person. My advice for caregivers is:
Recognize your critical role: I made a point of thanking caregivers and telling them directly: “Look, I know this is so important, what you’re doing. I appreciate it so much… What you’re doing is really, really important to the patient’s care.”
Understand the challenges: Caregiving for a chronic LBC patient is extremely demanding. Patients may be out of sorts, high needs, never particularly happy, not giving a lot of gratitude. This isn’t always the case, but it can happen. Even Saint Teresa got tired in Calcutta.
Set realistic expectations: I would tell caregivers: “You love this person, you’re devoted to this person—and we all have limits.” I emphasized that recognizing your own limits is important and healthy.
Seek additional support: I would always ask caregivers if they had other help available, understanding that it’s often too much for just one person to handle.
Question 5: LBC and Long COVID
MM: This question is from someone who had LBC and went into remission but then got long COVID and their LBC symptoms returned. Could long COVID cause a relapse of LBC? Could acute Lyme disease treatment work in such a case?
Dr. J: During remission, a patient does build up what I call immunologic capital; however, COVID is a profound stressor that challenges a fragile immune system. I have observed that COVID can act as a potent stressor that reactivates dormant LBC. Several of my former patients who hadn’t been seen for two to five years contacted me saying they got long COVID and their LBC symptoms returned. But reactivated LBC can be put back in remission with a shorter course of treatment.
Question 6: Jemsek and AI
MM: Would you ever consider programming a dedicated AI to guide patients and doctors in the Jemsek Protocol® as your legacy?
Dr. J: I’m a dinosaur who didn’t want to learn computers in 1999—but I recognize that AI represents the next technologic wave and that AI is upon us and is not going to go away. I do believe it will take generations before AI replaces the human touch in medicine.
While I don’t rule out the possibility, I’m clearly not making AI a priority and would need significant technical support to make that happen. For the time being, to share my insights about illness, treatment, healing, I’m planning to publish a memoir, a newsletter, and an LBC monograph. More information on ChooseLifeOverLyme.com
Question 7: Medication Hypersensitivity
MM: What is your approach to treating patients with LBC who have significant medication hypersensitivity—including mast cell stabilizers and supplements/herbal treatments?
Dr. J: Treating patients with significant medication hypersensitivity, including those with mast cell issues, represents one of the most challenging aspects of LBC treatment. Mast cell response is an expression of chronic inflammation. In working with my patients with mast cell, my goal was to neutralize the target: histamine, an inflammatory molecule that dominates the landscape. Histamine isn’t inherently bad; it’s not our enemy, except when there’s too much of it.
Patients need to learn which foods are the highest in histamine and balance their diet to avoid getting too much of it. Even some types of probiotics can be problematic, as they can produce histamine and trigger reactions.
For patients with hypersensitivity, I used a staged approach:
A. Over-the-counter antihistamines.
B. DAO (diamine oxidase) supplementation: DAO is a simple little enzyme found in our gut, which breaks down histamine. It was originally made from porcine sources by one company, but now there are legume-derived versions (from peas) available, which eliminates porcine intolerance issues.
C. Chromelin products: Mast cell stabilizers.
D. Referral to allergist for IV treatments: For more severe cases that don’t respond to the initial approaches.
Question 8: Multiple Organ Invasion
MM: Is it possible for Lyme to go from attacking the neurological system to attacking the joints, too? If yes, could it go on to attack the heart?
Dr. J: Yes, LBC can absolutely move from attacking the neurological system to attacking the joints, and it can go on to attack the heart. It can do any sequence of all the above, involving all bodily systems, with a predilection (tropism) for the neurological system, which is the most sinister and hideous thing that it does.
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Bartenderbonnie
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Member # 49177
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I mentioned to copy and paste to save because you might want to refer back to the lecture. LymeNet’s search function is still not working.
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Are his former patients able to get their medical records?
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
hshbmom2
Unfortunately I have had no luck in contacting Dr Jemsek over this very issue. He abruptly closed his practice, disabled his phone contact number and refuses to address his former patient’s concerns regarding their medical files.
I have nothing to offer to the patients that have reached out to me. Sorry. 😞
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Thank you Bartenderbonnie. It's very disappointing & frustrating to hear this.
Posts: 28 | From OH / WV / AL | Registered: Dec 2016
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