Archive for the ‘Lyme’ Category

Long Haul COVID & Persistent Lyme; Is There a Silver Lining?

 

http://  Approx. 1 Hour

May 13, 2021

Long Haul COVID & Persistent Lyme; is There a Silver Lining?

About This Event:

National experts and patients come together to explore how these two diseases may be confused and address the ongoing health repercussions they each represent – particularly as outdoor activities increase and Lyme disease continues to be widely misdiagnosed. Both organizations are well positioned to host this event.

As early responders to the pandemic, Project Lyme provided professionally managed patient support to the Lyme community through the Lyme & COVID Facebook group. In addition, during its educational outreach to the community, Dr. Richard Horowitz correctly predicted the overlap between these diseases over a year ago.

For its part, Bay Area Lyme Foundation, a renowned as a leading sponsor of Lyme disease research in the U.S., is also a supporter of the Resilience Project, which seeks to identify people who, despite high risk of exposure to COVID-19, Lyme disease or other illnesses, do not exhibit any symptoms.

Featuring:

  • Dr. Richard Horowitz — a board certified internist, medical director of the Hudson Valley Healing Arts Center, scientific advisor to Bay Area Lyme Foundation and author of How Can I Get Better?
  • Dr. Christine Green — a practicing physician who has been treating Lyme disease since 1989 and has seen more than 100 patients with COVID-19 including those who have both Lyme and COVID-19. Dr. Green also serves on the boards of the International Lyme and Associated Disease Society (ILADS), LymeDisease.org and Bay Area Lyme Foundation.
  • Dr. Steven Phillips — Yale-educated expert on zoonotic infections, co-author of the newly-released and highly-acclaimed book Chronic, and scientific advisor to Bay Area Lyme Foundation.
  • David Roth — Lyme disease and COVID-19 patient. Executive Committee Chair, Project Lyme.
  • Laure Woods — Lyme disease and COVID-19 patient. Founder and Co-Chair, Bay Area Lyme Foundation.

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Category:

Lyme, Viruses

Enroll in ImmuneSense – a Clinical Study For Lyme Testing

 
I posted about this previously here.  It appears they are still accepting qualified patients.  You must be ages 18 and up, have symptoms suggestive of Lyme disease, WITH an EM rash, if on antibiotics, initiated less than a week ago, and you will be required up to 4 blood draws to be taken over 12 months.

 

https://1nhealth.com/health-care-providers/?  Go here for more information.  

Lyme season is here.

Your patients may hold the key to a new and potentially better diagnostic test.
About 300,000 people in the U.S. are infected with Lyme disease through tick bites each year. 1,2

You may hold the key to a new and potentially better diagnostic test.

Join us in the fight against Lyme disease by enrolling in the ImmuneSense™ Lyme clinical study. If you’ve been recently diagnosed with Lyme disease or you suspect you have Lyme disease, your immune system may hold key information that can help advance the development of a novel test.

 
GET INVOLVED

The Northeast, the Mid-Atlantic region and the Upper Midwest are hotspots.

 
GET INVOLVED

Only 30% of people with acute Lyme infections receive a positive test result with existing laboratory tests. 3

GET INVOLVED

The ImmuneSense™ Lyme study is currently collecting blood samples from patients for clinical validation of a T-cell-based assay that is a potential diagnostic for Lyme disease.

The T-cell-based test may offer:

• Earlier detection of Lyme disease than current tests

• A look at patients’ T-cell immune response to the bacteria that causes Lyme disease

Your patients can contribute to validating this novel test, and may be eligible to earn as much as $400 for taking part in the study.

Your patients can enroll in ImmuneSense™ Lyme study by filling out this questionnaire.

Category:

Activism, Lyme, Testing

What Does a Lyme Flare-Up Feel Like?

https://danielcameronmd.com/what-does-a-lyme-flare-up-feel-like/

WHAT DOES A LYME FLARE-UP FEEL LIKE? ASK THE LYME DOC

What does a Lyme flare-up feel like

Lyme disease is a tick-borne illness that can lead to unpredictable disease flare-ups and remissions. The best know flare-up is called a Herxheimer reaction. A Herxheimer reaction was first identified in patients with syphilis and occurs when the body reacts to endotoxin-like products released by the death of bacteria in the body after starting an antibiotic. A flare-up may occur following a trigger or as part of the illness.

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When a Lyme disease flare occurs, patients will notice a return of the symptoms they have experienced before or a worsening of existing symptoms. Some patients may also develop new symptoms. A flare-up can come and go and vary in intensity.  What does a Lyme flare-up feel like? The symptoms of a flare-up can include:

  • an increase in fatigue
  • problems with memory and concentration, sometimes referred to as ‘brain fog’
  • extreme sensitivity to bright lights, heat, cold, and noise
  • muscle stiffness
  • mood changes (including irritability)
  • poor quality sleep
  • dizziness
  • numbness or tingling in hands and feet
  • widespread muscle pain
  • blurred vision
  • general body pain

What triggers a flare-up?

One of the best ways to prevent a flare is to determine what might be causing it in the first place. These causes are called triggers. Triggers for Lyme disease vary by person, but they can include:

  • emotional stress (such as a divorce, death in the family, or accidents)
  • physical stress to the body (i.e., surgery, physical harm, concussion)
  • life stress or stressful events
  • infections, colds or viral illnesses
  • exhaustion
  • diets including processed sugars and alcohol
  • menstrual period
  • lack of sleep
  • traveling and/or changes in schedule
  • changes in treatment

How do you prevent a flare-up?

There are ways to help prevent a flare-up but most importantly, patients need to listen to their bodies and identify triggers that set off a flare in symptoms. Following are several ways to prevent a flare-up:

  • Treat your Lyme disease
  • Reduce your stress
  • Get enough rest and sleep
  • Stay away from foods that make you feel worse, including alcohol and processed sugars
  • Learn to pace yourself to avoid doing too much when you are feeling well
  • Keep up your health
  • Stay hydrated
  • Work with your doctor to get your symptoms under control
  • Some people find ‘positive thinking’ helpful
  • Try focusing on the things you can do, rather than those you can’t
  • You might find a mental health provider helpful

Editor’s note. What does a Lyme flare-up feel like?  Ask the Lyme doc sponsored by Dr. Cameron

Related Articles:

Herxheimer reaction in 13-year-old boy with Lyme disease

Can I consume simple sugar or alcohol if I have Lyme disease?

Clinical judgment leads to successful Lyme disease treatment in young child

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**Comment**

Great read.  One of the toughest aspects of this illness(es) is deciphering what is causing what.  I did notice trends throughout treatment but it was difficult to completely understand what was causing symptoms.  Unfortunately, due to feeling worse, patients often want to either stop treatment or change doctors.  I can not count the times I felt this as well.  This disease(s) is unbelievable and causing unbelievable suffering.  That’s the first thing to remember.  The second thing to remember is it takes time.  LOTS of time.  For us, it took over 5 years of persistent treatment often using 4-5 things simultaneously, as well as copious supplements, dietary changes, and stuff I’ve forgotten or blocked out!

Stay the course!  That’s my best advice.  Don’t quit at the first sign of trouble.  Discuss it with your practitioner but try and learn about the herxheimer reaction, and talk with other experienced patients, which alone can alleviate fear that you are somehow “off your rocker” or your treatment isn’t working.

Now, if you aren’t feeling anything during treatment, that’s a potential problem as well.  One of the things I learned from Dr. Burrascano is drug dosage matters.  Many doctors do not consider this issue, but I have found it be explain many patients’ lack of improvement.  Other times they might have hit a plateau and need to switch up the medications.  Since we are fighting stealth infections our treatment needs to also be stealthy and change often.

One personal experience relating to dosage remains embedded in my mind:  the pharmacist neglected to tell me that since they were out of a certain dosage of a particular antibiotic, they gave me a different dosage of which I was required to take double the amount to equal what I took previously.  So instead of taking 500mg, I was only getting 250mg.  Immediately I began suffering with unimaginable PAIN in my shoulder joint.  I was a wreck.  During this time my PT was offering free Biomat sessions.  I went daily and told him to crank it as high as it would go.  He covered my entire body – but not my head – creating a “sauna” effect.  I either did 30 or 60 minutes of this DAILY and it got me by.  After nearly a week of this, I discovered the dosage error and started taking TWO pills which gave me 500mg.  Within ONE dose, PAIN GONE!  POOF!

This little unplanned experiment taught me much about the importance of dosage.  And bizarrely, dosages are often somewhat arbitrarily given to everyone despite their weight and size.  Even veterinarians weigh pets to determine dosage!  Why isn’t this considered for humans!

So, one of the first things I ask patients who aren’t herxing or noticing any change is what dosage they are taking and if they’ve discussed the dosage issue with their practitioner.  Please keep this in mind – I believe this is a major reason why some don’t see improvement or stagnate.

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Category:

Lyme

Did Untreated Bartonella Steal Her Eyesight? At 91, She Still Wonders

https://www.lymedisease.org/did-bartonella-steal-her-eyesight-at-91-she-still-wonders/

Did untreated Bartonella steal her eyesight? At 91, she still wonders.

By Mimi Winer

Starting on my 32nd birthday in April 1962, I experienced flu-like symptoms accompanied by sudden onset of bilateral disturbed vision.

Over the years, my previously 20/20 perfect sight worsened, and I became totally blind. There is no history of retinal degenerative disease in my family. My eye disease imitates retinitis pigmentosa, which is a genetic disease and does not come on suddenly the way mine did.

Early in the game, I was seen by a prominent ophthalmologist. He could find nothing wrong and told me I had hysterical blindness—whereupon I became hysterical.

Eventually, a Lyme diagnosis

It would be decades before I was diagnosed with Lyme disease. At age 91, I am still fighting tick-borne diseases and am now totally blind from what I strongly suspect was untreated Bartonella.

Despite my husband being an internist teaching at Harvard Medical School and in the practice of internal medicine, I was not diagnosed or treated until 1989.

Preceding my tick-borne diseases, I was treated with prednisone for two years for sarcoidosis–an inflammatory disease that affects multiple organs in the body. I now know that sarcoidosis sometimes precedes or accompanies Lyme disease.

After I stopped the prednisone, the latent Lyme disease started becoming very pushy–presenting more and more with neurological symptoms.

After having more than 25 medical doors slammed in my face, I finally found a young physician (a former student of my husband) who was willing to work with me. When my new primary care doctor took me on, he believed that I was sick, but he was not a Lyme disease doctor. After I found “Dr. Joseph Burrascano’s Guidelines” online and downloaded them for my doctor, we started following his advice.

Antibiotics brought some relief

Over the years, I remember having pleaded for long term antibiotics. I always noticed that whenever I happened to take antibiotics (say, for a strep infection) I would suddenly start to feel better. With the approval of my doctor, I have now taken antibiotics on and off for many years. Although the antibiotic “cocktails” are not a cure for me, when I have flares, they are an important part of my medical regimen.

It was not until about five years ago that we started treating for Bartonella. Although it has not cured me, rifampin has made a huge difference in my comfort zone. I had gone from 125 pounds to 80 pounds and over the years, multiple doctors had claimed I had anorexia nervosa. I am finally back to 92 pounds, but no matter how hard I try, my weight will not go any higher

In any case, once I learned about Bartonella causing eye diseases, I suggested that we treat for it. Of course it will not bring back my sight, but the treatments for Bartonella have brought me out of hell. Even at 91, I function better than I did for all those years of torture when I was a young mom. I still feel poorly–on and off–but I am able to live alone and manage my own care much of the time. .

Right now, POTS and crazy heart beats are taking their toll. When I try to do anything aerobic or exert too much, I collapse. It is not my age, but the disease. When the flare quiets down, I can go about my business and get out and walk. Walking makes me feel better when my disease is quiet, but is impossible during a flare. Otherwise, I do an hour of gentle yoga and look forward to listening to audio books all night.

Sometimes, I feel just like one of Dr. Phillip’s patients in his new book: “Chronic.”

Mimi Winer lives in Massachusetts.

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**Comment**

Bartonella is the fly in the ointment for both my husband and me.  The combination of Rifampin and Clarithromycin ALWAYS sets us straight and truly has “brought us out of hell” as well.  

There’s no way a single doctor can know everything and it’s imperative we partner with them for our own healing.  I highly encourage every patient to read and study the organisms, various treatments, the history, and any topic surrounding health.  I know there are phases in the journey where this is overwhelming, but set a small goal to learn something new about health every day and in a year you will have learned 365 new things.  It adds up. Even if you see a LLMD (Lyme literate doctor), which I highly encourage, each patient is a unique case.

In this website is a search bar where you can look up topics.  Make use of this.  Also, as you scroll down the main page you will see various tabs you can click into for information.  I’ve read and condensed material from numerous doctors that you can glean from, print off, and discuss with your doctor.  A very helpful resource are the treatments articles as I discuss the organism, research that’s been done, and numerous treatment options. Here’s an example:  There’s a “categories” tab on the right side of the website.  Within that is an article called “Lyme Disease Treatment”:  https://madisonarealymesupportgroup.com/category/lyme-disease-treatment/  

It contains four LLMD’s treatment suggestions as well as natural options.  Study this and discuss these treatments with your doctor.  You can find similar articles on Bartonella, Babesia, Mycoplasma, and more.
 
 

Category:

Bartonella, Eye Issues, Lyme

Can Lyme Disease Stay With You Forever?

https://danielcameronmd.com/does-lyme-disease-stay-with-you-forever/

CAN LYME DISEASE STAY WITH YOU FOREVER? ASK THE LYME DOC.

does-lyme-disease-stay-with-you-forever

All too often, physicians assume that Lyme disease is easy to diagnose and treat. But for those clinicians treating tick-borne illnesses on a regular basis, Lyme disease is clearly a complex illness that is frequently misdiagnosed and challenging to treat with some patients experiencing chronic, long-lasting symptoms. Doctors treating Lyme disease are often asked by patients: Does Lyme disease stay with you forever or can it be cured?

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Can Lyme disease stay with you forever? Although many patients will improve with appropriate treatment, others will experience ongoing Lyme disease symptoms that may stay with them forever. A growing number of case studies continue to document patients with chronic illnesses associated with Lyme disease.

Following are several examples:

Chronic neurologic Lyme disease

In the New England Journal of Medicine, Logigian and colleagues described patients with chronic neurologic Lyme disease who had been ill for years. [1] Their symptoms included fatigue, poor sleep, cognitive impairment, irritability, headaches, lightheadedness, and joint pain. Some of the patients improved with antibiotic treatment but symptoms eventually reoccurred. Others failed treatment. The authors expressed concern that treatment may not have eradicated the infection.

Neuropsychiatric Lyme disease

Fallon and colleagues described patients with Lyme disease, who were initially presumed to have a psychiatric illness. [2] The patients had been diagnosed with “paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”

Lyme encephalopathy

In another study, Fallon et al. described individuals with Lyme disease who had been ill an average of 9 years. These patients had failed on average of two previous treatments, with many of them failing retreatment.

Post-Treatment Lyme Disease Syndrome*

Rebman and colleagues found that despite antibiotic treatment, patients with Post-Treatment Lyme Disease Syndrome (PTLDS) remained ill with pain, fatigue, impaired cognitive function, and poor functioning. [3]

Central Sensitization Syndrome and Pain

Researchers have described central sensitization syndrome in patients with Post-Treatment Lyme Disease Syndrome. “The primary symptoms of central sensitization include pain, fatigue, and sensory hyperarousal.” [4] Meanwhile, Hanna et al. discussed the case of a woman with PTLDS who experienced chronic, severe pain. [5]

Postural Orthostatic Tachycardia Syndrome (POTS)

Kanjwal and colleagues described 5 Lyme disease patients who developed a type of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome (POTS). “These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope.” [6]

Furthermore, they added, “The debilitating nature of these symptoms had resulted in loss of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension.”

Pediatric Acute-onset Neuropsychiatric Syndrome

In some individuals, Lyme disease has been associated with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which is characterized by the onset of several neurologic and/or psychiatric symptoms. Swedo and colleagues have suggested further studies to determine whether Lyme disease could lead to PANS. [7]

Death

In the CDC’s Morbidity and Mortality Weekly Report, clinicians described 5 deaths due to Lyme carditis, [8] while Yoon and colleagues described a 17-year-old man who died of Lyme carditis [9] and another study reported a female patient who died from the tick-borne illness Babesia. [10]

Editor’s note: Can Lyme disease stay with you forever? It certainly seems so.  I am not in favor of the term Post-Treatment Lyme Disease Syndrome until there is a reliable test to demonstrate the absence of a persistent infection.

Related Articles:

Autopsy study reviews cases due to sudden cardiac death from Lyme disease

Could Ketamine help manage pain in patients with Post-treatment Lyme disease Syndrome?

Patients can die when Lyme carditis is not treated

References:
  1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  2. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
  3. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
  4. Batheja S, Nields JA, Landa A, Fallon BA. Post-treatment lyme syndrome and central sensitization. J Neuropsychiatry Clin Neurosci. 2013;25(3):176-186.
  5. Hanna AF, Abraham B, Hanna A, Smith AJ. Effects of intravenous ketamine in a patient with post-treatment Lyme disease syndrome. Int Med Case Rep J. 2017;10:305-308.
  6. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
  7. Swedo SE, Leckman JF, Rose NR. From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Pediatrics & Therapeutics.1-8.
  8. Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016;186(5):1195-1205.
  9. Yoon EC, Vail E, Kleinman G, et al. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015;24(5):317-321.
  10. Kwon HY, Im JH, Park YK, Durey A, Lee JS, Baek JH. Two Imported Cases of Babesiosis with Complication or Co-Infection with Lyme Disease in Republic of Korea. Korean J Parasitol. 2018;56(6):609-613.
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Category:

Lyme, research