Archive for the ‘Lyme’ Category

Torrey v. IDSA et al Receives Extended Stay Through February 14

https://www.lymedisease.org/torrey-stay-extended/

Judge in Lyme lawsuit extends stay in case through February 14

Torrey v IDSA

Journalist Mary Beth Pfeiffer reports via Twitterthat proceedings in Torrey v. IDSA et al have been delayed through February 14.

Torrey v. IDSA is the federal lawsuit filed by a group of Lyme patients against six members of the Infectious Diseases America and (originally) eight insurance companies. (One of the insurers, Kaiser Permanente, has settled. Seven insurances companies remain in the suit.)

The named individuals are authors of the 2006 IDSA Lyme disease treatment guidelines. The suit charges that the six colluded with insurance companies to deny treatment to Lyme patients.

Here’s what Pfeiffer posted:

Torrey v IDSA

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For more:  https://madisonarealymesupportgroup.com/2019/12/06/latest-in-anti-idsa-insurers-lawsuit-kaiser-settles/

https://madisonarealymesupportgroup.com/2017/11/15/lyme-patients-file-lawsuit-against-idsa-and-insurers-over-treatment-denials/

https://madisonarealymesupportgroup.com/2019/03/05/patient-lawsuit-against-idsa-insurers-moves-forward-in-texas/

https://madisonarealymesupportgroup.com/2017/12/09/25303/  10-Points- Suing Architects of Lyme Policy As Task Force Meets to Review it

https://madisonarealymesupportgroup.com/2019/04/27/amended-complaint-in-lyme-lawsuit-battle-lines-are-drawn/

https://madisonarealymesupportgroup.com/2019/03/26/idsa-lawsuit-patients-may-have-to-undergo-independent-medical-exams/

https://madisonarealymesupportgroup.com/2019/02/27/should-lyme-patients-rico-lawsuit-include-yale/

Category:

Activism, Lyme

What is Brain Fog & What Can a Patient Do to Get Rid of It?

https://globallymealliance.org/dealing-with-brain-fog/

by Jennifer Crystal

WHAT IS BRAIN FOG, EXACTLY? WHAT DOES IT FEEL LIKE? WHAT CAN A PATIENT DO TO GET RID OF IT?

Writing a weekly blog post is a thrilling and rewarding process. I love connecting with readers like me over various aspects of living with tick-borne illness, and I’m grateful to be able to share my story. I’m also thankful to have the physical ability to write on a tight deadline, which I haven’t always been able to do. In my worst days of fighting Lyme disease and two of its co-infections babesia and Ehrlichia, I couldn’t write at all. This was in part due to the achiness of my joints, but mostly, it was due to brain fog.

So what is brain fog, exactly? What does it feel like? What can a patient do to get rid of it? Now that I have greater neurological clarity, I can offer some information and tips on what I’ve learned about this frustrating symptom.

What is brain fog?

Lyme is an inflammatory disease. When Lyme pathogens in the form of spirochetes cross the blood-brain barrier, inflammation occurs in the central nervous system. “Common neurocognitive problems include poor memory, slower speed of thinking, difficulty with retrieval of words, and impaired fine motor control,” writes Brian A. Fallon, MD and Jennifer Sotsky, MD, in their book Conquering Lyme Disease: Science Bridges the Great Divide. “The slower mental processing speed contributes to the patient’s experience of ‘brain fog,’”[i]

A Johns Hopkins study published in the Journal of Neuroinflammation showed that scans done on 12 patients with Post-Treatment Lyme Disease Syndrome (PTLDS) all showed a chemical marker for brain inflammation, compared with 19 healthy controls. In an article published by Hopkins Medicine, Dr. John Aucott, Director of the Johns Hopkins Lyme Disease Research Center said: “What this study does is provide evidence that the brain fog in patients with [PTLDS] has a physiological basis and [that it] isn’t just psychosomatic or related to depression or anxiety.”[ii]

A patient with brain fog can experience delayed response times, making it difficult for them to write clearly or comprehend text or conversation. As Drs. Fallon and Sotsky explain, “Patients may have difficulty reading and find that when they move on to the next paragraph, they have forgotten what they [just]read before….Patients may have spatial disorientation such that familiar routes become suddenly difficult to navigate or appear unfamiliar… [Or] patients may have new on-set dyslexic changes, reversing numbers or letters when writing or words and phrases when speaking. They may confuse left and right and may find themselves making verbal errors that are uncharacteristic of them.…Other examples of cognitive errors might include placing the cereal box in the refrigerator or asking one’s spouse to please put the milk back in the radiator.”i

What does brain fog feel like?

During a relapse of my tick-borne illnesses, I had a brain scan done that showed this precise type of inflammation, which made for a lack of oxygen to the left side of my brain. What did those symptoms actually feel like inside my head? In my post, Living With Lyme Brain, I likened brain fog to thick molasses that slowly pours into all the crevices of your brain, until it feels so full that it might explode out of your skull. When I was at my sickest, I felt this fog all the time and wished I could open a spigot to relieve the pressure.

As I got better, my brain fog dissipated, but it still returns from time to time. It can come on slowly, like mist settling over a valley, and can then build into an impenetrable cloud. I get it when I’m neurologically over stimulated: after watching a fast-paced TV show, while hearing loud music, or after reading for too long. “Too long” is defined differently for every patient; at my lowest points, one sentence was hard to comprehend. Eventually, I could read a short article in a light entertainment magazine. Now I can read a whole book, but I still need to pace it out, chapter by chapter.

If I read for too long, I feel pressure start to build, beginning at the base of my cranium and then spreading up over my eyes. Once my head gets full, I struggle to find the right vocabulary, and sometimes I invert my word order. When the brain fog builds to this intense point, it causes me to be very tired. A graduate school professor once joked, “Sometimes, without warning, Jen runs out of steam.” He was right. Suddenly, my eyes would glaze over and I’d zone out.

Sometimes brain fog comes on not from neurological overstimulation but from physical fatigue. When I exercise for too long, or push myself too hard before an afternoon nap, I feel brain fog come on even if I haven’t been doing anything intellectual.

Once I hit this level of fatigue, it becomes hard for me to think clearly. This doesn’t just mean losing the ability to read a book or grade a student’s essay. I get recurring thoughts and feel sensitive and sad. I ask myself, am I actually feeling upset about a situation, or am I just experiencing brain fog?

What I do about brain fog

Once I’ve determined I’m experiencing brain fog, here’s what has helped the most to alleviate it:

  • Antibiotics: To alleviate the symptom of brain fog, you have to eliminate the cause: spirochetes. Lyme is a bacterial infection that needs to be treated with antibiotic therapy. My brain fog did not get better until I’d been on enough antibiotic therapy to really get at the spirochetes in my brain. Due to Herxheimer reactions, the brain fog actually got worse before it got better, but long-term antibiotic therapy eventually cleared up my infection enough to check the inflammation in my brain. The appropriate antibiotic protocol, and length of treatment, is different for every patient. What worked for me might not work for you, so it would not help you to learn about my specific protocol. Please discuss your symptoms and treatment with a Lyme Literate Medical Doctor (LLMD).
  • Anti-inflammatory medication: My LLMD put me on an anti-inflammatory medication that worked in conjunction with my antibiotic to get across the blood-brain barrier. This was a prescription medication, different than over-the-counter anti-inflammatory pills.
  • Herbal/nutritional supplements: Certain supplements such as essential fatty acids can help reduce inflammation in the brain. Talk with your LLMD about which supplements would be best for you.
  • Anti-inflammatory diet: For me, it helped to eliminate sugar and gluten from my diet. For others, it also helps to eliminate dairy. Some foods like certain green vegetables, nuts, lemon, ginger, and blueberries are known to have anti-inflammatory properties.
  • Water: The more you can flush your system, the faster you will eliminate live and dead Lyme bacteria (just be sure to keep your electrolytes balanced; I do so with electrolyte-infused water).
  • Time limits: To stop my brain fog before it starts, I impose time limits on my screen and reading time. Even if I’m feeling okay after an hour of watching TV, I make myself take a break, so that the fog doesn’t suddenly come rolling in.
  • Rest: These days, the very best thing I can do when my brain fog flares is rest, rest, rest. This means sleep, but it also means just having some quiet down time lying on the couch or going for a short walk. Many people think of reading or watching TV as resting, but for a patient with neurological Lyme disease, that is not the case. We need quiet, calm activities like coloring, baths, or soft instrumental music. The idea is to shut your brain off—to get away from screens, noises, and other stimuli.

Brain fog can be overwhelming. When you’re experiencing it, you might feel like the pressure in your head will never go away. With time, rest, and proper treatment, though, the fog eventually lifts so you can enjoy clearer skies.

[i] Fallon, Brian A. and Sotsky, Jennifer. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (52, 314).

[ii] https://www.hopkinsmedicine.org/news/publications/hopkins_medicine_magazine/medical_rounds/spring-summer-2019/visualizing-brain-fog-in-post-treatment-lyme-disease

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/2019/12/28/hydration-may-affect-cognitive-function-in-some-older-adults/

Category:

diet and nutrition, Herbs, Inflammation, Lyme, Psychological Aspects, research, Supplements, Treatment

Integrated Tick Management Reduces Ticks by 93% Study Finds

https://www.ncbi.nlm.nih.gov/pubmed/31853763

2019 Dec 18. doi: 10.1007/s10493-019-00452-7. [Epub ahead of print]

Evaluating the effectiveness of an integrated tick management approach on multiple pathogen infection in Ixodes scapularis questing nymphs and larvae parasitizing white-footed mice.

Little EAH1,2, Williams SC2,3, Stafford KC 3rd1,2, Linske MA1,2, Molaei G4,5,6.

Abstract

We investigated the effectiveness of integrated tick management (ITM) approaches in reducing the burden of infection with Borrelia burgdorferi, Babesia microti, and Anaplasma phagocytophilum in Ixodes scapularis. We found a

  • 52% reduction in encountering a questing nymph in the Metarhizium anisopliae (Met52) and fipronil rodent bait box treatment combination as well as a
  • 51% reduction in the combined white-tailed deer (Odocoileus virginianus) removal, Met52, and fipronil rodent bait box treatment compared to the control treatment.
  • The Met52 and fipronil rodent bait box treatment combination reduced the encounter potential with a questing nymph infected with any pathogen by 53%.
  • Compared to the control treatment, the odds of collecting a parasitizing I. scapularis infected with any pathogen from a white-footed mouse (Peromyscus leucopus) was reduced by 90% in the combined deer removal, Met52, and fipronil rodent bait box treatment and by
  • 93% in the Met52 and fipronil rodent bait box treatment combination.
Our study highlights the utility of these ITM measures in reducing both the abundance of juvenile I. scapularis and infection with the aforementioned pathogens.

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For more:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

https://madisonarealymesupportgroup.com/2019/07/18/frequent-prescribed-fires-can-reduce-risk-of-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2018/04/03/fire-good-news-for-tick-reduction/

https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2019/06/16/study-shows-effectiveness-of-factory-treated-permethrin-impregnated-clothing-works/

https://madisonarealymesupportgroup.com/2019/08/09/military-eyes-bug-repellent-coating-to-replace-permethrin-in-uniforms/

 

Category:

Anaplasmosis, Babesia, Lyme, research, Testing, Ticks

Lyme: The Differential Diagnosis

https://globallymealliance.org/lyme-the-differential-diagnosis/

By Jennifer Crystal

WITH OVERLAPPING SYMPTOMS, HOW DO YOU KNOW THAT YOU HAVE LYME AND NOT ANOTHER DISEASE? IT’S IMPORTANT TO CONSIDER ALL HEALTH FACTORS

A patient recently asked me, “How do you know you have Lyme and not multiple sclerosis or chronic fatigue syndrome? It sounds to me like you have chronic fatigue syndrome.”

I understand such questions. They come up because Lyme is considered the “great imitator.” Many of its symptoms are similar to those of other illnesses such as multiple sclerosis (MS) and chronic fatigue syndrome (CFS), as well as rheumatoid arthritis (RA), Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS), lupus, and fibromyalgia. If a doctor is not well-versed in tick-borne disease, they might have difficulty making a differential diagnosis—differentiating between Lyme and other diseases.

However, there are important distinctions between these conditions. For example, Lyme arthritis can affect one, few, or many joints, whereas RA tends to affect most. While synovitis (inflammation of a synovial membrane) can mean Lyme or RA, only Lyme would show fluid in the sub-patella area.[1]A good Lyme Literate Medical Doctor (LLMD) understands such nuances.

I know I have Lyme because I had an unequivocal CDC-positive test. I also tested positive for two tick-borne co-infections, babesia and Ehrlichia. I presented with specific clinical symptoms of these diseases and the tests corroborated my LLMD’s clinical assessment. He knew that my low CD-57 test was indicative of Lyme, because ALS and MS don’t usually have low CD-57 counts. He knew that my hallucinogenic nightmares and other sleep disturbances were a sign of neurological Lyme and babesia (later confirmed by a SPECT scan), and he knew that my migratory on-and-off aches were typical for Lyme, not RA (which are more symmetrical and persistent). Moreover, he recognized that my crushing fatigue was a result not just of my tick-borne illnesses, but also of my underlying Epstein-Barr virus.

Yes, you read that right: I write primarily about my tick-borne diseases, but they’re not my only medical conditions. So in some ways, the patient who questioned me was not incorrect; I do have CFS, or a version of it called chronic fatigue immune deficiency syndrome. It stemmed from a case of mono that became chronic Epstein-Barr virus (EBV) because I had underlying tick-borne infections that prevented me from adequately fighting the mono.

Here’s the rub with these umbrella diseases, diseases under which a number of symptoms fall: often patients have more than one of them, or their symptoms fall under the broad spectrum of more than one, because what they’re battling is actually a multi-system immunological breakdown from years of health issues. As Richard Horowitz, an LLMD, states in his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, “Identifying the multifactorial causes of chronic illness is the next most important paradigm shift in medicine.”[1]

To consider all health factors in making a differential diagnosis, Dr. Horowitz uses a detailed Lyme multi-system infectious disease syndrome (MSIDS) questionnaire based on one originally created by another prominent LLMD, Joseph Burrascano. This health map looks at Lyme disease, co-infections, other bacterial infections, viral infections, parasitic infections, and fungal infections, and takes into account immune dysfunction, inflammation, environmental toxicity, allergies, nutritional and enzyme pathways, mitochondrial dysfunction, neuropsychological issues, autonomic nervous system dysfunction, endocrine abnormalities, sleep disorders, gastrointestinal abnormalities, abnormal liver functions, issues with pain, drug use, and physical conditioning.[2]

As Dr. Horowitz notes, “This process ensures that no symptoms are left out and gives the provider an initial opportunity to develop a broad range of differential diagnoses…It provides the health-care provider with clues that point to whether the patient has a high probability of having Lyme disease, a possible case of Lyme disease, or is unlikely to have Lyme disease.”[3]

Other LLMDs use similar broad-spectrum evaluations to make differential diagnoses. Dr. Bernard Raxlen explains in his book Lyme Disease: Medical Myopia and the Hidden Global Pandemic that he looks for “red flags” or “common themes,” listing two full pages of symptoms that are specific to tick-borne illnesses. These include including air hunger, purple/red streaks or scratches, constant sweating on one side of the body, psychogenic or emotionally driven seizures, loss of reading ability, and migrating pain, particularly in joints, muscles, and nerves.[4]

I spent two years treating EBV before seeing an LLMD and realizing I was only fighting half the battle. I know now to ask, what else could be going on? Am I treating all of my symptoms? Does my diagnosis speak to all of them? The patient who questioned me probably only read one of my articles that described my fatigue, and made a quick assumption that I have CFS. Had this person read more of articles describing my specific experiences with neurological Lyme disease, they may have drawn a different conclusion. It’s important for patients and for doctors to get the full picture before drawing conclusions or making diagnoses. Lyme may be the great imitator, but it is not a catch-all diagnosis, and we must understand what differentiates it from other diseases.

[1]Gaito, Andrea, MD. “Clinical Evaluation and Treatment of Lyme Arthritis; An Autoimmune Perspective.” ILADS, 2012.

[2]Horowitz, Richard I., MD. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press, 2013 (29).

[3]Horowitz, 58.

[4]Horowitz, 33.

[5]Raxlen, Bernard, MD with Cashel, Allie. Lyme Disease: Medical Myopia and the Hidden Global Pandemic. London: Hammersmith Health Books, 2019 (26-7).

jennifer crystal_2Opinions 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 article pointing out the blatant fact that Lyme is often not “just Lyme,” but a complex illness caused by many factors working together.

The first thing I tell patients to do is print and fill out the Horowitz questionnaire.  If you have a preponderance of symptoms, it’s likely you have Lyme/MSIDS.  Go here for the questionnaire:  https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf

This questionnaire has been validated: https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/

It’s also quite helpful to print and fill out other checklists for coinfections:

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/

Category:

Lyme

Lyme Disease: Multifaceted & Misunderstood!

https://www.linkedin.com/pulse/lyme-disease-multifaceted-misunderstood-darin-ingels-nd/?

Lyme Disease: Multifaceted & Misunderstood!

Darin Ingels, ND

Darin Ingels, ND

Public awareness of Lyme disease is largely overlooked by healthcare professionals and the public at large. As a general community, we know that Lyme disease is on the rise.

We also know that it is a very difficult disease to properly diagnose and treat. It is primarily transferred from tick bites, although new evidence suggests mosquitos and other insects may be carriers as well. It’s a disease that is often misunderstood. At one point, it was used as an excuse for the poor behavior of a contestant on a reality show.

There is a plethora of information on the complexities of Lyme disease. However, it can be extremely misleading and somewhat confusing for the average person to grasp. Understanding Lyme disease is very important because it can lead to a more informed and better treatment plan with your health care practitioner.

1. Lyme Disease is known as a bacterial infection, which is different from illnesses caused by viruses.

An example of a viral infection is the common cold or flu. A bacterial infection requires a different response from the human immune system and therefore may require powerful herbs and even specific antibiotics to treat. These antibiotics can be effective against Lyme disease, but sometimes the side effects from these can outweigh the benefits.

No alt text provided for this image

2. Lyme Disease is not be caused by a single species of bacteria.

Lyme Disease is generally thought of an infection from a single bacterial species, primarily Borrelia burgdorferi. Why this may be the causative agent in most cases of Lyme disease, there are actually many other species of bacteria that also contribute to Lyme disease symptoms. There are over 300 known species of Borrellia in the world, so it is unlikely than one is the sole cause of Lyme disease.

Additionally, tick bites can also transmit other bacteria, called coifections. Coinfections can be transmitted along with Borrelia burgdorferi and can cause additional symptoms associated with Lyme.

Coinfections are also diverse in the ways that they hide in the body from the immune system, so getting a comprehensive test to evaluate for these coinfections is important.

These tests allow us to have better insight as to which specific co infection an individual may have. This way, we can be more prepared at devising treatment protocols on a case-by-case basis.

3. Ticks might not be the only carrier of Lyme disease.

Ticks are referred to as “vectors” for Lyme disease. This means that the tick is a specific route, or pathway, for Lyme disease to reach the human body. Vectors, therefore, are delivery systems for viral or bacterial infections.

Lyme can be transferred primarily through tick bites and secondarily through other insect bites.

Though there is less research done on other insects, there are cases where patients have presented with Lyme disease symptoms after getting bitten by fleas and mosquitos. However, there still isn’t enough information at this time.

No alt text provided for this image

4. One disease, many different symptoms.

Lyme is multifaceted. There is no one set of symptoms that it follows, although brain fog, muscle soreness and joint stiffness, fatigue, anxiety, higher levels of stress, lack of sleep, headaches and even cardiac issues are just some of the more common ones I hear from patients.

Symptoms tend to come on gradually and can build up over time. This makes it difficult to get a proper diagnosis early on.

Lyme Disease has an impact on the nervous system and endocrine system, which is why so many symptoms exist. Lyme and its coinfections look for weaknesses in the body and try to magnify the impacts of those weaknesses.

5. Lyme Disease can be treated.

There are ways to lessen the impact of Lyme disease and in some cases, get rid of the infection altogether.

Nutrition, herbal therapies, low dose immunotherapy, homeopathy and pulsed electromagnetic frequency devices can help the body get over the hump of Lyme disease. An effective strategy can be developed to support the body & immune system in order to combat Lyme disease.

If you think you might have Lyme disease or you have been suffering from multiple unexplained symptoms for a long time, seek a Lyme-literate healthcare provider to get tested and proper treatment.

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**Comment**
My only comment is that the treatments suggested may not be enough.  This is a complex illness with many pathogens often involved.  It takes a nuanced, open minded approach that is willing to try many modalities to achieve wellness.  Serious antimicrobials should be a part of this treatment plan.
You can look up other treatments by scrolling down the website and looking on the right hand side of the page.  There are articles for Babesia, Bartonella, Mycoplasma, parasites, viruses, Anaplasmosis and more.

Category:

Lyme, Treatment