Archive for the ‘Lyme’ Category

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.

By

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.

Category:

Lyme, Uncategorized

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.
BY MICHELLE REGALADO

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)

Category:

Activism, Lyme, Viruses

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

 

 

___________________

**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/

Category:

Lyme, Pain Management

Lyme Disease, One of Most Intractable Contemporary Health Problems, Requires Paradigm Shift

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7069-6

Malaria and Lyme disease – the largest vector-borne US epidemics in the last 100 years: success and failure of public health

Ilia Rochlin, Dominick V. Ninivaggi & Jorge L. Benach

BMC Public Health volume 19, Article number: 804 (2019) June 24, 2019

Abstract

Malaria and Lyme disease were the largest vector-borne epidemics in recent US history. Malaria, a mosquito-borne disease with intense transmission, had higher morbidity and mortality, whereas Lyme and other tick-borne diseases are more persistent in the environment. The responses to these two epidemics were markedly different. The anti-malaria campaign involved large-scale public works eradicating the disease within two decades. In contrast, Lyme disease control and prevention focused on the individual, advocating personal protection and backyard control, with the disease incidence steeply increasing since 1980s.

Control of Lyme and other tick-borne diseases will require a paradigm shift emphasizing measures to reduce tick and host (deer) populations and a substantial R&D effort.

These steps will require changing the political climate, perceptions and opinions to generate support among governmental levels and the general public. Such support is essential for providing a real solution to one of the most intractable contemporary public health problems.

Category:

Lyme, research

Is Your Child Crazy, or Sick? Mental Illness vs. Medical Disorder

https://www.lymedisease.org/kinderlehrer-crazy-sick/

Is your child crazy, or sick? Mental illness vs. medical disorder

Kinderlehrer

By Daniel A. Kinderlehrer, MD

Brad’s parents brought him to see me when he was eleven years old. He was scratched by a cat at age two and developed enlarged lymph nodes in his neck. As a toddler, he began experiencing episodes of inconsolable crying and rocking. By age five, he clearly had problems focusing and was not interested in reading.

His symptoms worsened around age eight. The boy became agitated and easily overwhelmed, with outbursts of anger and rage. His father often had to hold Brad, so that he didn’t destroy the house.

Brad described dark episodes when he had obsessive, intrusive thoughts, such as hurting himself and others. He had severe anxiety and refused to go to school. He had pseudo-seizures, when he would suddenly flop to the ground but be totally conscious.

Brad had other symptoms including sharp chest pains with shortness of breath; abdominal pain with nausea, constipation and flatulence; knee, neck, and spine pain; lightheadedness, sound sensitivity, fatigue, and sugar cravings.

His mood issues were so severe that he underwent two psychiatric hospitalizations. His psychiatrist tried several medications. There was some improvement on Prozac and Trileptal, an anti-epileptic drug that is also prescribed as a mood stabilizer.

We’ll get back to Brad. But first, I want to describe one way that microbes can cause psychiatric symptoms.

Dr. Susan Swedo is a researcher in the field of pediatrics and neuropsychiatry. Since 1998, she has been Chief of the Pediatrics & Developmental Neuroscience Branch at the US National Institute of Mental Health.

PANDAS and PANS

In 1994, Swedo was the lead author on a paper characterizing PANDAS—Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. Swedo described children who experienced the sudden onset of OCD, tics and other mood and behavior problems following a strep infection.1

Since then, it has become clear that strep is not the only microbe that can trigger psychiatric symptoms. Accordingly, this syndrome is now referred to as PANS—Pediatric Acute-onset Neuropsychiatric Syndrome.

Herpes simplex virus, influenza A virus, varicella zoster virus, Epstein-Barr virus, HIV, recurrent sinusitis, mold, and the common cold have been identified as triggers.2-4 Tick-borne infections including Mycoplasma pneumonia, Bartonella heneslae, and probably Borrelia burgdorferi, the Lyme pathogen, have also been identified as triggers.2,5,6

PANDAS, caused by strep, is now considered a subset of PANS.

PANS may be a lot more common than we realize. In 2018, Dr. Nancy Brown and I did a pilot study in which we tested 10 adolescents at a residential treatment center in Colorado.7 None of the teens had a known organic illness. All 10 were diagnosed with Major Depressive Disorder and seven with Generalized Anxiety Disorder. They were too symptomatic to stay at home or go to public school.

On testing, six of the 10 kids had antibodies to tick-borne infections—Lyme, bartonellosis and Tick Borne Relapsing Fever. Three had antibodies to Streptococcus. What was most surprising was that nine of the 10 teens had elevated antineuronal antibodies.

Antineuronal antibodies

Elevation of these antibodies, along with activation of a specific enzyme (calcium calmodulin-dependent protein kinase II—CaMKII) is the laboratory hallmark of PANS.8 In the 1990s, Dr. Madeleine Cunningham performed groundbreaking research to demonstrate the association of these lab abnormalities in kids with this disorder.9

It turns out that antibodies that target some microbes attack neuronal tissue and activate CaMKII, which disrupts dopamine transmission.10 The result is ‘Brain on Fire,’ neuroinflammation that triggers a host of neuropsych symptoms.

Children with PANS display a wide array of mood and behavior issues, especially anxiety, OCD, depression, and irritability/oppositional/anger issues that can reach epic proportions like Brad’s. Interestingly, many outbursts are followed by remorse.

Children with PANS often fall behind developmentally and academically. Other common symptoms include involuntary movements, tics, and eating disorders. While the case definition of PANS limits the diagnosis to symptoms that have a sudden onset,11 most of my patients’ symptoms have come on gradually.

In my medical practice, which is limited to patients with tick-borne infections, I see many children and teens. I have been surprised by how many suffer from PANS. While they all have Lyme disease, it appears that Bartonella and Mycoplasma may be the worst offenders in triggering PANS.

What are the best treatments?

It is important that these kids be treated with antibiotics,12 although careful titration is necessary because Herxheimer reactions can be severe.

Dr. Amiram Katz, a neurologist in Connecticut, has found that low-dose penicillin injections have been very effective.13 I have had the same experience. Katz recommends long-acting penicillin injections (LA Bicillin), 1.2 million units once weekly if less than 100 lbs. and 2.4 million units once weekly if over 100 lbs. If there is no significant improvement after ten doses. then there is no reason to continue.

Intravenous Gammaglobulin (IVIG) has helped many kids with PANS.14 IVIG is composed of human antibodies and has the paradoxical function of stimulating the immune system while decreasing inflammation. It is administered intravenously or subcutaneously, often every three weeks. However, it is quite expensive and insurance coverage is difficult to procure, except for residents of Illinois.

Other interventions are often helpful. Many kids with PANS have mast cell activation syndrome (MCAS), which contributes to inflammation.15 In these cases, interventions such as antihistamines can be helpful. Cromolyn, which inhibits the release of histamine and other inflammatory mediators from mast cells, is particularly beneficial.

Problem foods

Food sensitivities can also contribute to inflammation,16 so parents should consider specialized testing or an elimination/challenge diet. Be particularly suspicious of food cravings—the foods people crave are often the worst offenders.17

In my practice, sugar, yeast, gluten and dairy products are the most common culprits. Mold can trigger inflammation as well. Even though I live in Colorado, a low humidity state, I am amazed at how many of my patients suffer from mold issues.

Other interventions are occasionally beneficial. Anti-inflammatory agents, whether ibuprofen or natural products such as curcumin, may help. Some people find that low-dose naltrexone decreases symptoms. Family counseling and support groups are also a good idea. Occasionally, antidepressants can lessen symptoms, particularly sertraline.

Other modalities that sometimes prove helpful include biofeedback and plasmapheresis, a procedure in which blood is removed and antibodies filtered out before the blood is replaced.12

Back to Brad

Brad suffered from several tick-borne infections: Lyme disease, babesiosis and bartonellosis. He likely acquired Bartonella from the cat scratch at age two, which then activated a congenital infection with Borrelia burgdorferi and Babesia.

He is sensitive to gluten, dairy, and yeast, which I suspected from the pattern of his food cravings. He had a positive Cunningham Panel consistent with PANS. After major improvement on antimicrobials and intestinal support, he suffered a relapse triggered by a mold exposure. Now on disulfiram, he is doing much better.

I think that once the immune system gets triggered by one or more microbes, the systemic inflammation leads to multiple other sensitivities that contribute to even more inflammation. Brad likely did not acquire food sensitivities until after the infections flared. Then he also became more sensitive to mold.

These kids are suffering a great deal; some of them are suicidal. If we do careful detective work and treat the sources of their inflammation as well as the inflammation itself, we can help them get their lives back. Moleculera Labs, which performs the Cunningham Panel, offers a host of information on PANS.

Daniel A. Kinderlehrer, MD, is an internist in Denver, Colorado. His medical practice is dedicated to treating people with tick-borne illness. He is the author of the forthcoming book “Recovery From Lyme: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness.”

References

  1. Swedo SE, Leonard HL, Kiessling LS. Speculations on Antineuronal Antibody-Mediated Neuropsychiatric Disorders of Childhood. Pediatrics. 1994Feb1;93(2):323–6.
  2. Frankovich J, Thienemann M, Rana S, Chang K. Five Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome of Differing Etiologies. J Child Adolesc Psychopharmacol. 2015;25(1):31–7. DOI: 10.1089/cap.2014.0056.
  3. Tisi G, Marzolini M, Biffi G. Pediatric acute onset neuropsychiatric syndrome associated with Epstein–Barr infection in child with Noonan syndrome. Europ Psychiatry. 2017;41(Supplement):S456. DOI: 10.1016/j.eurpsy.2017.01.492.
  4. Breitschwerdt EB, Greenberg R, Maggi RG, Mozayeni BR, Lewis A, Bradley JM. Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. J Cent Nerv Syst Dis. 2019Mar18;11. DOI: 10.1177/1179573519832014.
  5. Breitschwerdt EB, Greenberg R, Maggi RG, Mozayeni BR, Lewis A, Bradley JM. Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. J Cent Nerv Syst Dis. 2019Mar18;11. DOI: 10.1177/1179573519832014.
  6. Rhee H, Cameron D. Lyme disease and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): an overview. Int J Gen Med. 2012;5:163–74. DOI: 10.2147/ijgm.s24212.
  7. Kinderlehrer DA, Brown N. Microbial Induced Autoimmune Inflammation as a Cause of Mental Illness in Adolescents: A Pilot Study. Submitted for publication Feb 25, 2020.
  8. Shimasaki C, Frye RE, Trifiletti R, Cooperstock M, Kaplan G, Melamed I, et al. Evaluation of the Cunningham Panel™ in pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS): Changes in antineuronal antibody titers parallel changes in patient symptoms. J Neuroimmunol. 2020 Feb15;339:577138. DOI: 10.1016/j.jneuroim.2019.577138.
  9. Cunningham MW, Cox CJ. Autoimmunity against dopamine receptors in neuropsychiatric and movement disorders: a review of Sydenham chorea and beyond. Acta Physiol. 2016Jan;216(1):90–100. DOI: 10.1111/apha.12614
  10. Cox CJ, Zuccolo AJ, Edwards EV, Mascaro-Blanco A, Alvarez K, Stoner J, et al. Antineuronal Antibodies in a Heterogeneous Group of Youth and Young Adults with Tics and Obsessive-Compulsive Disorder. J Child Adolesc Psychopharmacol. 2015Feb;25(1):76–85. DOI: 10.1089/cap.2014.0048.
  11. Chang K, Frankovich J, Cooperstock M, Cunningham MW, Latimer ME, Murphy TK, et al. Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015;25(1):3–13. DOI: 10.1089/cap.2014.0084.
  12. Calaprice D et al. Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population. J Child Adolesc Psychopharmacol. 2018;28(2):92-103.
  13. Katz A. (2018, November). NADAL—Neuropsychiatric Autoimmune Disorder Associated With Lyme Disease –A PANDAS/PANS Equivalent: Diagnosis and Treatment. Presented at the 19th annual conference of The International Lyme and Associated Diseases conference, Chicago, IL.
  14. Kovacevic M, Grant P, Swedo SE. Use of intravenous immunoglobulin in the treatment of twelve youths with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. J Child Adolesc Psychopharmacol. 2015;25(1):65–69.
  15. Walker ME, Hatfield JK, Brown MA. New insights into the role of mast cells in autoimmunity: evidence for a common mechanism of action? Biochim Biophys Acta. 2012;1822(1):57–65.
  16. Rosa JS et al. Allergic Diseases and Immune-Mediated Food Disorders in Pediatric Acute-Onset Neuropsychiatric Syndrome. Pediatr Allergy Immunol Pulmonol. 2018 Sep 1;31(3):158-165.
  17. Randolph TG, Moss RW. An Alternative Approach to Allergies. Harper & Row, New York, ©1979.

___________________

**Comment**

Fantastic article and clear reminder that many children are losing their childhoods to infections that trigger mental illness. The lack of education and action in the medical community on this issue is astounding.  Again, medical professionals who have taken the Hippocratic Oath to “do no harm,” are telling children they are imagining their illness or making it all up:  https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2020/02/12/complex-multisystemic-illnesses-lead-to-psychiatric-diagnosis/

https://madisonarealymesupportgroup.com/2019/11/29/its-all-in-your-head-medicines-silent-epidemic/

https://madisonarealymesupportgroup.com/2019/05/27/have-you-been-told-its-all-in-your-head-the-new-biology-of-mental-illness/

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

 

 

 

Category:

Bartonella, Lyme, Mycoplasma, Psychological Aspects, research, Uncategorized