Archive for the ‘Lyme’ Category

Lyme Neuroborreliosis in Adults: A Nationwide Prospective Cohort Study

https://www.ncbi.nlm.nih.gov/pubmed/32178995

2020 Feb 24:101411. doi: 10.1016/j.ttbdis.2020.101411. [Epub ahead of print]

Lyme neuroborreliosis in adults: A nationwide prospective cohort study.

Abstract

The goal of this paper is to characterize the clinical presentation, serological results, current antibiotic treatment practice, including compliance with current European guidelines, and outcome in adults with Lyme neuroborreliosis (LNB) diagnosed at departments of infectious diseases in Denmark. Using a nationwide prospective cohort of patients with central nervous system infections, we identified all adults (≥ 18 years of age) treated for LNB at departments of infectious diseases in Denmark from 2015 through 2017. The database contains information on baseline demographics, history of tick bite, erythema migrans, clinical presentation, laboratory results of blood samples, and cerebrospinal (CSF) biochemistry (e.g. specific Borrelia burgdorferi sensu lato (s.l.) antibodies in serum, B. burgdorferi s.l. intrathecal antibody index) as well as antibiotic therapy. Outcome was assessed by the Glasgow Outcome Scale (GOS) and the presence of residual symptoms at follow-up one month after discharge. We included 194 LNB patients with a median age of 59 years (range 18-85 years, interquartile range [IQR] 47-69 years). The female-to-male ratio was 0.8. A total of 177 of 191 (93 %) of patients had early (second stage) LNB.

  • A history of tick bite or erythema migrans was registered in 75 (39%) and 49 (25%) patients, respectively.
  • The median duration of neurological symptoms before first hospital contact was 21 days (range 0-600 days, IQR 10-42 days).
  • Predominant symptoms consisted of radicular pain in 135 of 194 (70%), cranial nerve paresis in 88 of 194 (45%), headache in 71 of 185 (38%), and extremity paresis in 33 of 194 (17%) patients.
  • Serum-B. burgdorferi s.l. IgM and/or IgG antibodies were detectable in 166 of 181 (92%) patients at the time of first CSF investigation.
  • Median duration of antibiotic treatment was 14 days (range 10-35 days, IQR 14-21 days) and 59 (39%) of the patients received intravenous ceftriaxone and/or benzylpenicillin G throughout treatment.
  • At the 1-month follow-up, GOS was unfavorable (< 5) in 54 of 193 (28%) patients. An unfavorable GOS score was more often registered in patients with ≥ 45 days of symptom duration (20 of 45 (44 %) vs. 34 of 145 (23 %); P = 0.006).

In conclusion, a European cohort of adult patients with LNB diagnosed between 2015-2017 presented with classic symptoms and CSF findings. However, a substantial diagnostic delay was still observed.

In disagreement with current guidelines, a substantial part of LNB patients were treated with antibiotics longer than 14 days and/or intravenously as route of administration.

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**Comment**

Please note that U.S. authorities and researchers continue to insist that 80% have the EM rash and base ALL research on that parameter, thereby missing a huge subset of patients: https://www.sciencedirect.com/science/article/abs/pii/S0732889318303304

https://www.cdc.gov/lyme/signs_symptoms/index.html

The above Denmark study; however, found 25% had the rash which is similar to the first ever patient group: 1976circularletterpdf

The most common symptom (70% had it) was radiating spinal pain, a hallmark symptom of Lyme disease, followed by facial palsy, headache, and weakness in arms and legs.

Of import: diagnostic delays and the fact treatment was longer than the current IDSA guideline standard of 14 days.

The question begging to be asked of course is whether these patients had other infections besides Lyme:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

Key Quote:  “Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

 

Lyme Brain: The Science & The Experience

https://globallymealliance.org/lyme-brain-the-science-and-the-experience/

by Jennifer Crystal

At the 2019 International Lyme and Associated Diseases Society (ILADS) conference in Boston, infectious disease specialist Francine Hanberg, M.D. gave a talk about the causes and manifestations of “Lyme brain” called “Neuropathology in Patients With Late Lyme Disease and Post-Treatment Lyme Disease Symptoms: CNS Vasculitis, Hypoperfusion, Inflammation and Neuropathy.”  Since I had suffered from many of the symptoms associated with Lyme brain—such as short-term memory loss, confusion, brain fog, word repetition, and word loss— her talk caught my attention.

Dr. Hanberg focused on documenting the severity of tick-borne diseases through brain imaging and neurodiagnostic studies. I was struck by her study “Watershed Sign As a Marker for Late Lyme Neuroborreliosis.” “Watershed” areas of the brain, it turns out, simultaneously receive blood from different arteries, the way a creek might receive water from different outlets that eventually drain into a river.

In a previous post, I described Lyme-brain as a feeling of  “molasses seeping through your brain, pouring into all the crevices until your brain feels…[as if] it will explode.” Reviewing Dr. Hanberg’s slides, I could imagine exactly where my “molasses” was pouring—or, rather, I could see where the inflammation in those areas once made my own brain feel so heavy with pressure.

Because Lyme tends to affect watershed areas, cognitive impairments from the disease are usually broad-spectrum, rather than localized as with stroke. As described in the book Lyme Brain by Nicola McFadzean Ducharme, N.D., a study done by neuropsychologist Marian Rissenberg, Ph.D. and Susan Chambers, M.D. explains the major cognitive challenges of Lyme as affecting seven cognitive categories.[i]

I’ve outlined these categories below. For each, I will explain what the impairment definition is, what it felt like for me in my worst days, and what improvements I’ve seen with remission.

  1. Attention and mental tracking

What it means: An inability to focus on one task through to completion or to multi-task

What I experienced then: If I was talking with someone and there was noise in the background, I couldn’t follow what was being said. Moreover, if I was writing even something as simple as an email, I could not endure any background noise, whereas, when I was in college I’d written papers with music playing and people talking all around me. I could complete tasks, but everything took longer than before. I sometimes had difficulty concentrating on a single task; it was hard for me to finish watching a TV show or reading an article without wanting to stop and do something else.

What I experience now: It’s still difficult for me to concentrate with background noise, though light instrumental music is okay. I can follow conversations with far greater acuity, and I can watch and process full-length TV shows and read articles and books. I can scroll through social media and process all the different things I’m reading without hindrance, and stay focused on the task at hand.

  1. Memory

What it means: Difficulty processing and retrieving information; forgetfulness

What I experienced then: I often could not remember the answers to questions as basic as “What’s your zip code?” or “Who’s the President?” It would take me several minutes to come up with the answer.

What I experience now: Sometimes it still takes me a moment to remember what I had for breakfast, but only when I’m overtired. The same is true for repeating conversations (telling a friend the same thing twice); I also have to remember that I’m getting older, too!). On the whole, I can process and retrieve information fast enough to navigate a busy city, give a lecture or facilitate conversation in my classroom. My long-term memory thankfully remains razor-sharp.

  1. Receptive language

What it means: Difficulty understanding written and spoken language; losing track of conversations, not being able to process ideas quickly enough to comprehend or respond in a timely fashion; difficulty reading

What I experienced then: There was a point when I could only process short emails and couldn’t even read a full magazine article. The words would blur in front of my eyes and I would read sentences over and over, trying to understand them. I’d lose track of what I was saying mid-conversation or even mid-sentence.

What I experience now: I can read full magazines and books, but pace myself in order not to get overwhelmed. I read and respond to many student essays. I read and easily process news articles. Once in a while, I’ll lose track of what I was saying, but that’s only when I’m tired or overwhelmed, and then I quickly self-correct.

  1. Expressive language

What it means: Difficulty communicating through written and spoken words

What I experienced then: When my grandfather was struggling with dementia, I’d watch him know what he wanted to say, but be unable to find the words. So he’d get frustrated and give up, and stop participating in conversation altogether. Sometimes, when I was very sick with tick-borne illnesses, that would happen to me. At other times my words would come out in a jumble. My doctor would ask for an overview of how I’d been feeling recently and I couldn’t summarize anything for him (I started keeping a written log of daily symptoms, so that I could put together a report for appointments).

What I experience now: I still keep that written log, but my ability to express myself has improved tremendously. I write weekly columns, have written two books, give lectures, and lead conversations all without issue. Occasionally I can’t come up with a specific word, but can usually get it when prompted.

  1. Visuospatial processing

What it means: Poor spatial relationships; vision difficulties

What I experienced then: My spatial relations have never been great, because I do not have binocular vision (I only see out of one eye at a time, which means I don’t possess depth perception). With Lyme, my capacity to experience spatial relations worsened. Sometimes I’d miss my mouth with the fork, or knock a glass before getting it into the dishwasher, or bump into furniture. Other Lyme patients find themselves getting lost or forgetting where they were going entirely.

What I experience now: My spatial relationships are still not very good, but I attribute these difficulties mostly to my previous vision issues.

  1. Abstract reasoning

What it means: The inability to grasp issues and reach conclusions, or the inability to understand the consequences of one’s actions.

What I experienced then: Sometimes conversations, which previously I would have been able to follow with ease, just seemed too high-level for me. It was as if my brain would “turn off” when people were discussing intellectual issues. This was frightening because I thought I had lost my intelligence and didn’t have anything worthwhile to say. Many Lyme patients thus afflicted might say or do things they would not have otherwise, which can take a toll on relationships.

What I experience now: I can process and synthesize information from multiple sources, recall it and contribute to a conversation. I’m a reflective person—over-analytical— so I overthink potential consequences too much, but that’s not always a bad thing.

  1. Speed of mental and motor processing

What it means: Inability to keep up with a lively conversation

What I experienced then: Returning to the feeling of one’s brain clogged with molasses, I processed everything very slowly. As mentioned earlier, it took too long for me to comprehend information and respond to it.

What I experience now: On most days, my head feels clear and I can process and express thoughts cogently. I’m best in the mornings, so I’ve learned to do creative work then, rather than in the late afternoons or evenings, and I always take an early afternoon nap. When I’m overtired, the brain fog can return, but it lifts much quicker than it used to, and I experience more sunny days.

Of course, this list begs the question, how did I get better? While there is no single protocol for everyone, my neurological symptoms improved through a combination of antibiotic and antimalarial medication, nutritional and homeopathic supplements, adjunct therapies like integrative manual therapy and neurofeedback, and an anti-inflammatory diet. For more ideas on addressing Lyme brain, check out the aforementioned book, or talk with your Lyme Literate Medical Doctor (LLMD).

Note: for patients with difficulty reading, my “Living With Lyme Brain” post is now available as an audio blog.

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[i] Ducharme, Nicola McFadzean. Lyme Brain. California: BioMed Publishing Group, LLC, 2016 (9-12).

Related Posts: 
Feed Your Body to Fight Lyme
Living with Lyme Brain
Dealing With Brain Fog


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

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For more:  https://madisonarealymesupportgroup.com/2020/03/02/overcome-lyme-brain-causes-solutions/

https://madisonarealymesupportgroup.com/2019/12/28/what-is-brain-fog-what-can-a-patient-do-to-get-rid-of-it/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

ILADS Launches Registry & Crowd-Solving Platform: One Health Lyme

ILADS Launches Registry and Crowd-Solving Platform: One Health Lyme

Chevy Chase, MD – March 26, 2020 – The International Lyme and Associated Diseases Society (ILADS) is launching a new registry and crowd-solving platform, One Health Lyme, which will provide valuable resources to healthcare providers who are treating patients with Lyme and related diseases. In the planning stages for a while, the launch of the One Health Lyme initiative is being pushed forward expeditiously in response to the COVID-19 pandemic.

One Health Lyme will give Lyme healthcare providers a unique opportunity to track and communicate the impact of COVID-19 on this specific group of patients. The unique immunological lesions of these patients will help us gain insights of general importance in the battle against COVID-19.

Similar to initiatives operated by specialty societies that treat autoimmune diseases, this project will collect data from physicians about patient experiences and treatments. The goal is to create a vast repository of information about lyme that physicians and researchers can use to study and treat it and related diseases. “Doctors are in the best position to provide insights into patient experiences and treatment efficacy,” says Dr. Robert Mozayeni, president of ILADS. “Our members are medical professionals who treat these vulnerable patients. One Health Lyme gives them a place to collect and centralize treatment response data.

One Health Lyme will also be used to provide educational material and support crowd-sourcing solutions—such as aggregating information about the efficacy of a new treatment. “Not only do we hope that it will provide real time educational information, but we also hope it will quickly supply data about what works for various subgroups of patients,” says Mozayeni.

Other Lyme organizations, such as MyLymeData, have been collecting patient-focused information, and ILADS plans to seek a partnership with them, allowing medical professionals to benefit from both initiatives.

The initiative is a collaborative effort with Groopit.co, whose software is designed specifically to collect data in real time from members of an extended team. Allowing loosely connected people to work together efficiently, Groopit helps organizations crowd solve, bring people together, and get quick results.

Now is a particularly important time to be collecting this information. ILADS members are in a unique position to understand how COVID-19 affects their patients.  By centralizing and sharing their observations and data, ILADS hopes that the One Health Lyme will not only inform how lyme disease patients are cared for, but it may provide insights into COVID-19 itself. “It may be that what we learn from our patients will help everyone,” notes Mozayeni.

About ILADS

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme through research and education and strongly supports physicians and other healthcare professionals dedicated to advancing the standard of care for Lyme and its associated diseases. For more information, visit: www.ilads.org

Media Contact: 
Barbara Buchman
301.263.1080

 

 

Corona With a Twist of Lyme

https://globallymealliance.org/corona-with-a-twist-of-lyme/

by Jennifer Crystal

Our nation is in a crisis about novel coronavirus COVID-19, and no one is more fearful than those with pre-existing conditions. These patients, along with the elderly, are at high risk if they contract the virus. Lyme patients are rightfully concerned that their underlying tick-borne infections makes them especially susceptible to COVID-19, and that getting COVID-19 will make their original underlyinginfection worse, landing them in the hospital on a ventilator.

I understand these worries, because I have them, too. While recognizing and not downplaying the risks, I want to give some measure of reassurance based solely on my own experience as a patient with Lyme, babesia, and ehrlichia, who is also recovering from a suspected case of COVID-19.

I first became symptomatic two weeks ago. As of this writing, my symptoms have diminished dramatically. I haven’t had a fever in five days, and my cough and shortness of breath are becoming less evident by the day. Despite my tick-borne infections, my immune system is fighting this respiratory virus very well. Moreover, the presumed virus does not seem to have worsened my response to tick-borne infections.

I’ve been lucky, and I know that won’t be the case for everyone. But there are steps Lyme patients can take now, either to prevent themselves from getting sick or to treat the virus if it’s a mild case:

  • Call your doctor. If you are not symptomatic, ask your Lyme Literate Medical Doctor (LLMD) what you should do to boost your immune system. My doctor had me increase the dose of some of my supplements. Do not just increase supplements or add new ones on your own, or based on advice you get off the internet. If you become symptomatic, call both your LLMD and your Primary Care Doctor before you do anything or go anywhere, unless you are in critical condition.
  • Do not immediately go to a hospital, doctor’s office, or testing center unless you are in critical condition. If you are mildly symptomatic, call your doctor and ask if it makes sense for you to be tested, if you need acute medical care, or if you can self-treat at home. The latter is the safest option. If you don’t already have COVID-19, you can contract it at a doctor’s office, hospital or testing center. If you do have it, you could infect others while you’re out and about. The exception is if you have a high fever or are in severe respiratory distress. Had I known a week ago what would happen when I did go for a test, I would have just stayed home, assumed I had COVID-19 and self-quarantined.
  • Do not pre-order hydroxychloroquine or take it prophylactically unless prescribed by your doctor. If you are already on hydroxychloroquine for Lyme and you contract COVID-19, the drug may help kill the virus. But there is not yet evidence taking it as a preventive measure might not help protect you from COVID-19, and it might worsen your Lyme symptoms. More importantly, it will diminish the supply for patients who have a genuine need for the medication, including certain Lyme patients and those with lupus and rheumatoid arthritis.
  • Electrolyte-enhanced water: COVID-19 is dehydrating. Stock up now, before you get sick, on as much electrolyte water as your family would reasonably need for a two-week period. Don’t buy more than that amount; leave some for other people, too. Do not hoard.
  • Fever reducers: Again, have these on hand before you get sick, but also do not hoard supplies.
  • Inhaler: Like hydroxychloroquine, this is not something you can or should use prophylactically, but if you already use an inhaler, this would be a great time to make sure it’s not expired or to get it refilled. If you experience mild COVID-19 symptoms, your doctor may prescribe a non-steroid bronchodilator. This has helped me immensely. Again, if you can, it’s better to use this treatment at home than to require a ventilator at a hospital.
  • Stay home! This time of social distancing is about you, the immunocompromised. Protect yourself! Don’t socialize with anyone outside of your immediate family. Even if that person seems healthy, they could be a carrier who could unknowingly pass COVID-19 on to you. Order groceries online and wipe them down with antiseptic wipes before bringing them into the house.
  • Wash and sanitize: Wash your hands as much as possible, for at least 20 seconds with warm soapy water. Sanitize an object before you touch it.
  • Do not panic! Lyme spirochetes thrive on stress. So don’t give them reason to start replicating while you’re trying to fend off an acute infection. The calmer you can stay, the healthier your body will remain.
  • And finally, Be Tick AWARE: Don’t let protecting yourself from one illness leave you vulnerable to another. Tick season has started and the ticks are out in full force, expanding their geographical reach more than ever. Make sure to protect yourself and your pets if you do go outside by using repellant and undertaking tick checks.

As Lyme patients, you may be compromised immunologically, but you are ahead of the game when it comes to convalescence and social distancing. You know what it’s like to be sick for much longer than the standard length of time for COVID-19. You know what it’s like to be isolated at home. You know how to take care of yourself and advocate for your needs. You already have resilience.

With these suggestions, appropriately considering, I hope that you will stay healthy, or, that if you do contract COVID-19, that you will fight it off effectively and promptly.

Be well.

Related Post:
Letter from CEO About COVID-19 and GLA Community 


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

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**Comment**

Great advice.  Lyme/MSIDS patients are already ahead of the curve in that we’ve had to learn about our bodies, healthy diet, the need for restful sleep, and supplementing for our body’s imbalances.  This is huge.  Never underestimate all you’ve had to learn and incorporate into your life as it will help you in so many ways.  As the author states, social distancing is a way of life for Lyme/MSIDS patients.

I too feel I had COVID-19 (based upon symptoms – I wasn’t tested, but then again please remember testing for this is abysmal), as did the rest of my family, and many of my friends and neighbors.  It was severe and laid me out for about a week but thankfully my immune system is functioning well and I bounced back quickly.  I have no long-term effects.

I take a different approach to fever-reducers.  I rarely use them.  I believe in letting a fever do the work it was designed to do – kill pathogens.  I’m obviously not alone in this thinking as hyperthermia is one of the main treatments for Lyme used in this German clinic:  https://elemental.medium.com/bringing-the-heat-using-hyperthermia-to-treat-lyme-disease-f61f81706c67  FYI:  I heard Douwes at a conference on this treatment and am not convinced it is curative for Lyme/MSIDS.  Like all other treatments – relapses still occur.

Be that as it may, heat still helps the body fight infections:  https://madisonarealymesupportgroup.com/2018/09/28/hotter-bodies-better-at-fighting-disease/

In fact, if you don’t have a fever you can induce one by using saunas, Biomat-type mats, and hot baths.  I’ve used heat therapy the entire time I was in treatment for tick-borne illness and it helps with pain, relaxation, and by heating the body to assist it in killing pathogens. I still use it.

For Lyme/MSIDS patients who are very ill or just recovering, this article is a good read:  https://hollywoodlife.com/2020/03/24/justin-bieber-lyme-disease-coronavirus-risks-doctor-interview/

Key quote:

“If they have that other layer of possible chronic infections or have immune dysregulation, they need to be all the more cautious,” Dr. Dempsey

Again, for perspective, look at this graph (as of January 2020) comparing COVID-19 deaths to other diseases:

https://www.sciencealert.com/this-chart-shows-how-the-wuhan-virus-compares-to-other-recent-outbreaks  Go here to see the graph more clearly – but COVID-19 is last on the list for deaths.  

Lack of Knowledge About Lyme Disease in Canada

https://danielcameronmd.com/lack-knowledge-lyme-disease-in-canada/

LACK OF KNOWLEDGE ABOUT LYME DISEASE IN CANADA

man hiking in shorts along lake

The number of Lyme disease cases in Canada continues to rise. Climate change, along with other factors, are enabling ticks to expand into the eastern and central provinces of Canada, including southern New Brunswick. But how knowledgeable are residents in those areas about Lyme disease and how willing are they to adopt protective measures to prevent tick bites? A new survey provides some answers.

Researchers surveyed 137 participants from 11 professional and recreational organizations across New Brunswick between December 2018 and February 2019. Thirty-six percent of the participants spent time outdoors for their occupation and 64% for recreational activities.

Only one of the participants had been previously diagnosed with Lyme disease in Canada, while 14 were unsure about whether they had ever been infected.

“Of these participants, two reported that their symptoms began six or more years prior to the completion of the survey and one participant indicated that they were still suffering at the time of the study,” the authors write.¹

Survey participants were asked how frequently they perform protective behaviors. For example, “How often do you wear long pants to avoid ticks infected with Lyme disease?”

Hiking (66%) was the most common activity reported by participants in the recreational group while golfing (12%) was the least. Other activities included sport fishing, home gardening, sport hunting, dog ownership, and recreational paddling.

The most commonly reported activities by participants who worked outdoors included individuals who owned a small wood lot, farmers, tree planters, forestry professionals, and a dog trainer. Owning a wood lot (63%) was the most common activity, while dog training (2.1%) was the least common activity.

Comfort inspires safety behaviors

The only two safety behaviors that occurred more than “sometimes” involved wearing long pants and protective footwear. However, these behaviors were related more to comfort than to tick bite prevention.

The authors noted that “the protective behaviors are only frequently adopted if they protect the individual from immediate discomfort, such as long pants protecting one’s legs from scratches and protective footwear preventing foot and ankle injuries.”

Individuals were less likely to adopt the following behaviors: tucking pants in socks, spraying insecticide on the environment, avoidance of sitting on grass, and avoidance of walking in long grass.

Survey results

“Overall, the entire sample reported a low level of knowledge about Lyme disease,” writes Pierre and colleagues in their article entitled “Knowledge and Knowledge Needs about Lyme Disease among Occupational and Recreational Users of the Outdoors.”¹

“Our findings call attention to a desire for further information about all aspects of tick exposure and Lyme disease among individuals that spend time outdoors in New Brunswick,” the authors write.

Furthermore, “behaviors linked to avoiding tick bites are being carried out relatively infrequently.”

Questions raised by survey participants

There were a number of questions and concerns raised by the participants that demonstrate their desire to know more about Lyme disease in Canada and the prevalence of infected ticks in their region.  Comments included:

“Knowing which areas are active with Lyme-infected ticks would be very helpful. I feel like all the precautions are not worth the trouble if my area is not a hot-spot. I don’t know if some areas are more high risk than others or if the risk is the same across the province, or region.”

“Clear protocol explanations for how to remove ticks and if they should be brought with you to the doctor – how to proceed.”

What are the “side effects, side effects from delayed/neglected treatment?”

“Is there a time limit where the effects of Lyme are permanently irreversible?”

“Is it life-threatening?”

“How soon should an individual seek medical attention if feeling symptoms of [Lyme disease] LD?

“Why is it so much easier to get a diagnosis for animals than it is for humans?”

“Pets get lots of ticks. I’ve heard different information about whether cats/dogs can get Lyme disease, how it affects them (how you can tell they have it), whether they can transfer it to you, etc.”

“How are physicians trained to deal with this serious disease?”

“Have any advancements been made in diagnosis and treatment?”

“Do you still have to have testing and treatment done in the USA for best results?”

Editor’s note: The questions raised by those living in Canada are the same questions I am asked regularly in my practice.

_________________

**Comment**

An independent Canadian tick researcher has proven that tick and Lyme proliferation has nothing to do with the weather:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

He’s even called out other researchers on shoddy, biased research on the topic:  https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

The reason this is important is researchers clamor for dollars.  We need research dollars going toward transmission studies, testing and diagnostics, as well as effective treatments.  The last thing we need is more climate data.

Ramona Singer “Building Up” Her Strength After Her Lyme Disease Diagnosis

https://www.bravotv.com/the-daily-dish/ramona-singer-shares-health-update-after-lyme-disease-diagnosis

The RHONY mom is sharing a personal update on her health.

Ramona Singer is using her time in self-quarantine to focus on her health. The Real Housewives of New York City cast member, who was diagnosed with Lyme disease earlier this month, says she’s working on “building up” her strength while self-isolating in Florida with her family.

Just days after confirming that she was being treated for Lyme disease, Ramona revealed that she was “voluntarily isolating” herself amid the ongoing coronavirus (COVID-19) pandemic. She later confirmed that she wasn’t self-quarantining alone, but rather hunkering down with daughter Avery Singer and ex-husband Mario Singer. (Story in link)

My #1 Headache Trigger? Lyme Disease

https://globallymealliance.org/my-1-headache-trigger-lyme-disease/

Listen to the audio version of this blog below:

Skiing has always been part of my life. I went to a college in Vermont that had its own ski run. After graduation, I moved to Colorado to teach high school, and to become a ski instructor. It was supposed to be the high point of my life, and in many ways it was, but there were also some very low points because I was wrestling with undiagnosed tick-borne illnesses.

One such low found me on the bathroom floor, writhing in pain from an excruciating migraine. The throbbing started over my left eye, working its way up over that side of my head and around the back to my neck. I felt as if my brain was going to explode out of my skull.

“It’s probably from the altitude,” a doctor later told me. In the years since I had started developing strange symptoms—fever, joint aches, exhaustion, hand tremors, hives—I grew accustomed to doctors writing them off with a simple explanation.

But altitude was not causing my migraines. In fact, I was suffering from Lyme disease, Ehrlichia, and Babesia, the last being a tick-borne parasite that consumes oxygen in red blood cells. Due to these infections, a scan would later show that I was not getting enough oxygen to the left side of my brain. Living at a high altitude certainly didn’t help this situation, but the root cause was the fact that my oxygen levels were already compromised by infection.

Babesia is not the only tick-borne disease that can cause headaches; so can Ehrlichia and relapsing fevers. But with or without co-infections, the vast majority of Lyme disease patients complain of headaches as a chief symptom, with pain ranging from moderate to severe. Many patients, myself included, have encountered migraines so debilitating they’re relegated to bed in a dark room due to pain, light sensitivity and nausea. Though tick-borne diseases can cause pain throughout the cranium, migraines are usually focused to one side. As a child, I had four surgeries to correct weak muscles in my eyes, especially on the left, leaving scar tissue over that eye. I later learned that Lyme bacteria, spirochetes, like to hide out in scar tissue, which may explain why my migraines always started over that eye.

So why are headaches so common for Lyme patients? Spirochetes can enter the central nervous system by crossing the blood-brain barrier. This barrier is supposed to protect the brain from infection, but spirochetes are tricky and swift and can coil their way across, causing headaches for their victims.

Lyme is an inflammatory disease, so once spirochetes enter the central nervous system, they cause swelling there. In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Dr. Richard Horowitz equates this inflammation to a fire that ignites heat, redness, pain, and loss of function.[1] Feeling like my brain was going to explode out of my skull was not really hyperbole; my head was indeed swollen, but I just couldn’t see it the way I would be able to if  I’d had a swollen ankle or knee.

At my lowest points of illness, I got migraines several times a week. I tried to try to push through the pain. I wanted to be living my life, teaching and skiing. But I always paid a high price for not listening to my body—or in this case, to my brain. Ignoring the headache only increased the pain, sometimes sending me to bed for two or three days at a time. I got prescription medication, which I learned to take as soon as I felt a headache coming on, rather than trying to wait it out. I also found that staying hydrated, eating foods rich in iron, and stretching gently—to help increase blood flow—sometimes helped alleviate my headaches.

The best treatment, however, was rest. If you have a swollen ankle or knee, you stay off that joint, giving it time to heal. The same is true for your brain. Your head needs time to recover from inflammation, and nothing has helped that process more for me than sleep. Though I rarely get migraines these days, I still get pressure on the left side of my head when I get tired or neurologically overwhelmed. I never want to spend a day in bed, but one is better than being there for several days—and it’s certainly better than writhing on the bathroom floor. A day spent recuperating means more days on the slopes, and I’ll take as many of those as I can get.

[1] Horowitz, Richard I. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press. 2013. (186)


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

 

 

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**Comment**

Headaches with Lyme disease can be excruciating – particularly if you have Lyme and Babesia.  Bartonella also can give severe head pain.  Since I had all three, the head and spine were always my thorn.  I wondered if I’d ever have a day free from head pain.

Please know that appropriate treatment is necessary for this and YES, I am free from head pain after 5 years of treatment and a few relapses.  While I give credit predominantly to antimicrobials (for me, antibiotics) here’s a few things that seemed to help:

Lastly, I know of a few Lyme patients that also have a Chiari diagnosis.  In short, this is when inflammation from an infection causes the brain to be pushed through the opening at the base of the skull.  Since this is where most of my pain was I had a MRI to rule Chiari out.  Read about this condition here:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/