Archive for the ‘research’ Category

Rising Geriatric Babesia Cases May Require Longer Treatment

https://danielcameronmd.com/geriatric-babesia-rising-longer-treatment/

GERIATRIC BABESIA CASES ARE RISING AND MAY REQUIRE LONGER TREATMENT

woman with geriatric babesia receiving medication from nurse

The number of Babesia cases among the elderly in the U.S. appears to be growing. According to a study by Menis and colleagues, published in the journal Open Forum Infectious Diseases, 19,469 Medicare beneficiaries had a Babesia diagnosis recorded between 2006 – 2017, with the highest rates occurring in babesiosis-endemic states. [1]

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Overall, the number of individuals contracting Babesia is rising, as well. The annual number of cases per year climbed from 4 per 100,000 to 9 per 100,000 in the U.S. between 2006 and 2017. The annual number of cases of Babesia per year for individuals over the age of 85 was 4 out of 100,000. In comparison, the number of Lyme disease cases among the elderly was 15.98 per 100,000.

Most of the cases of Babesia occurred in the Lyme-endemic states of Massachusetts, Rhode Island, Connecticut, New York, and New Jersey, according to the authors. Other states recording Babesia cases included Florida, Pennsylvania, California, Maryland, and Virginia. Some cases of Babesia were also reported in New Hampshire, Maine, Vermont, Minnesota, Wisconsin, Texas, North Carolina, and Illinois.

The most common test used to diagnose Babesia was a blood smear in the institutional setting, wrote Menis in a related paper. [2] The intracellular parasite in the red blood cell clears after a few days. The most common tests used in a physician’s office involved antibody or PCR testing. [2]

Co-infections can be deadly

A Babesia infection can be serious for patients.

“Patients co-infected with Lyme disease experienced more symptoms and a more persistent episode of illness than did those (n=10) experiencing babesial infection alone,” wrote Krause and colleagues [3]. In another paper, the authors explain, “Immunocompromised people who are infected by B. microti are at risk of persistent relapsing illness.” [4]

For some patients, including the elderly, a Babesia infection can be more serious. “Babesiosis can be life threatening, particularly for persons who are asplenic, immunocompromised, or elderly,” wrote Krause et al. [4]

85-year-old dies from Babesia and Ehrlichia

Javed and colleagues describe the case of an 85-year-old man who died of a concurrent Babesiosis and Ehrlichiosis infection. [5]

He was an avid gardener and golfer in good health except for hypertension. He did not have a tick bite or rash. The man was hospitalized with weakness and jaundice. He had mild anemia, a very low platelet count, a mildly elevated bilirubin, and mildly reduced renal function.

The doctors diagnosed Babesia based on a bone marrow biopsy revealing intraerythrocytic inclusions (tetrads), typical of babesiosis. In retrospective, his admitting bloods from admission revealed parasitemia in 8% of the red blood cells. The Babesia antibody IgM and IgG were positive for Babesia.

READ MORE: Elderly Lyme disease patients more likely to have unfavorable treatment outcomes

The elderly man was treated with IV clindamycin and IV quinine. His anemia worsened despite transfusion of two units of blood and he was transferred to a tertiary hospital for possible exchange transfusion. The doctor added azithromycin but not Atovaquone.

His condition worsened. His oxygen saturation dropped to 84% and he subsequently developed bilateral pneumonia, renal failure, hepatic failure, and a coma. He was too ill to tolerate exchange transfusion.

He died within 60 hours of admission to the tertiary care center.

Post-mortem tests were positive for Human Monocytic Ehrlichiosis, the cause of Ehrlichia. He was never treated with doxycycline, the most commonly prescribed medication for Ehrlichia.

Treatment of Babesia

Krause and colleagues reported that a 10-day course of Mepron and Zithromax would be as effective as clindamycin and quinine and have less side effects. [3] The Medicare beneficiaries were far more likely to be prescribed Mepron with Zithromax than clindamycin and quinine. [1]

Some patients with Babesia require longer treatment. Krause and colleagues reported immunocompromised and elderly patients were more likely to need longer term therapy.” [4]

In another paper, the authors point out that,

“Such patients generally require antibabesial treatment for >or=6 weeks to achieve cure, including 2 weeks after parasites are no longer detected on blood smear.” [4]

More than one-third of elderly Babesia patients were not treated with anti-Babesia treatment during their evaluation. The study was not designed to determine if the elderly were subsequently treated.

IDSA position

The 2020 Infectious Diseases Society of America (IDSA) guidelines for Babesia highlighted concerns regarding severe Babesia in the elderly.

“Numerous immunodeficiencies and comorbidities have been associated with severe babesiosis, including asplenia and hyposplenism, cancer, congestive heart failure, HIV infection, immunosuppressive drugs, and advanced age.” [6]

For immunocompromised patients, we suggest monitoring Babesia parasitemia using peripheral blood smears even after they become asymptomatic and until blood smears are negative. PCR testing should be considered if blood smears have become negative but symptoms persist (weak recommendation, moderate-quality evidence).

In addition, the IDSA guidelines advised longer treatment for immunocompromised Babesia patients.

“A subgroup of highly immunocompromised patients reported in a case control study required at least 6 consecutive weeks of antibiotic therapy, including 2 final weeks during which parasites were no longer detected on peripheral blood smear.” [6]

However, some patients can relapse.

“A few cases of relapse despite at least 6 consecutive weeks of atovaquone plus azithromycin demonstrate that resistance to atovaquone and/or azithromycin can emerge in highly immunocompromised patients during an extended course of this antibiotic combination,” wrote Krause et al. [6]

Editor’s note: I share the same concerns regarding Babesia in the elderly, and I base the length of antibiotics on the patient’s response to treatment.

Related Articles:

Tick bite causes 3 diseases in elderly woman

Lyme disease mimics autoimmune disorder in elderly woman

Podcast: Confusion in elderly woman with anaplasmosis and babesia infection

References:
  1. Menis M, Whitaker BI, Wernecke M, et al. Babesiosis Occurrence among the U.S. Medicare Beneficiaries Ages 65 and Older, During 2006-2017: Overall, and by State and County of Residence. Open Forum Infectious Diseases. 2020
  2. Menis M, Forshee RA, Kumar S, McKean S, Warnock R, Izurieta HS, Gondalia R, Johnson C, Mintz PD, Walderhaug MO, Worrall CM, Kelman JA, Anderson SA. Babesiosis Occurrence among the Elderly in the United States, as Recorded in Large Medicare Databases during 2006-2013. PLoS One. 2015 Oct 15;10(10)
  3. Krause PJ, Telford SR, 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. JAMA. Jun 5 1996;275(21):1657-60.
  4. Krause PJ, Gewurz BE, Hill D, et al. Persistent and relapsing babesiosis in immunocompromised patients. Clin Infect Dis. Feb 1 2008;46(3):370-6. doi:10.1086/525852
  5. Javed MZ, Srivastava M, Zhang S, Kandathil M. Concurrent babesiosis and ehrlichiosis in an elderly host. Mayo Clin Proc. May 2001;76(5):563-5. doi:10.4065/76.5.563
  6. Krause PJ, Auwaerter PG, Bannuru RR, et al. Clinical Practice Guidelines by the Infectious Diseases Society of America (IDSA): 2020 Guideline on Diagnosis and Management of Babesiosis. Clin Infect Dis. Nov 30 2020;doi:10.1093/cid/ciaa1216

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For more:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

Mainstream medicine still does not believe the seriousness of this complex illness that thousands upon thousands are suffering from.  The interaction of confections make cases extremely difficult to treat.  Do not mess around with this, get to a Lyme literate doctor asap:  https://madisonarealymesupportgroup.com/2020/11/25/what-makes-a-doctor-lyme-literate/  These doctors typically layer treatment to reduce any potential of resistance to treatment.  We often took 4 things simultaneously.

Category:

Babesia, research, Treatment

Predicting Current & Future Distribution of Western Black-legged Tick Across the Western US

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0244754

Predicting the current and future distribution of the western black-legged tick, Ixodes pacificus, across the Western US using citizen science collections

Published: January 5, 2021

https://doi.org/10.1371/journal.pone.0244754

Abstract

In the twenty-first century, ticks and tick-borne diseases have expanded their ranges and impact across the US. With this spread, it has become vital to monitor vector and disease distributions, as these shifts have public health implications. Typically, tick-borne disease surveillance (e.g., Lyme disease) is passive and relies on case reports, while disease risk is calculated using active surveillance, where researchers collect ticks from the environment. Case reports provide the basis for estimating the number of cases; however, they provide minimal information on vector population or pathogen dynamics. Active surveillance monitors ticks and sylvatic pathogens at local scales, but it is resource-intensive. As a result, data are often sparse and aggregated across time and space to increase statistical power to model or identify range changes. Engaging public participation in surveillance efforts allows spatially and temporally diverse samples to be collected with minimal effort. These citizen-driven tick collections have the potential to provide a powerful tool for tracking vector and pathogen changes. We used MaxEnt species distribution models to predict the current and future distribution of Ixodes pacificus across the Western US through the use of a nationwide citizen science tick collection program. Here, we present niche models produced through citizen science tick collections over two years. Despite obvious limitations with citizen science collections, the models are consistent with previously-predicted species ranges in California that utilized more than thirty years of traditional surveillance data. Additionally, citizen science allows for an expanded understanding of I. pacificus distribution in Oregon and Washington. With the potential for rapid environmental changes instigated by a burgeoning human population and rapid climate change, the development of tools, concepts, and methodologies that provide rapid, current, and accurate assessment of important ecological qualities will be invaluable for monitoring and predicting disease across time and space.

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**Comment**

Authors continue the debunked theory that the climate is behind tick proliferation.  Repeating something over and over does not make it true. This study was a complete waste of time and money and does nothing to help suffering patients.  Ticks are showing up worldwide in areas they shouldn’t be carrying pathogens they shouldn’t have.  Move on.  There’s much bigger fish to fry!

For more:  

Category:

research, Ticks

Severe Neuropathic Pain Due to Lyme Podcast

https://danielcameronmd.com/pain-due-to-lyme-disease/

PODCAST: SEVERE NEUROPATHIC PAIN DUE TO LYME DISEASE

man with foot pain due to lyme disease

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this episode, I will be discussing the case of a 36-year-old man with severe neuropathic pain due to Lyme disease.

By
(Listen here or go to top link)

I first read about this case in the journal Neuromodulation by Karri and colleagues.

A 36-year-old man suffered with a chronic pain syndrome associated with post-treatment Lyme disease syndrome (PTLDS). [1] PTLDS is a complication of Lyme disease. Individuals with PTLDS remain ill with pain, cognitive impairment, and fatigue and find it difficult to function.

The patient described severe neuropathic pain in both feet and categorized the pain at a level 10 out of 10 despite treatment with methadone 5 mg every 4 hours as needed. The doctors assumed that the tick-borne infection had resolved and elected not to treat with antibiotics.

Instead, they treated the patient’s symptoms. The pain remained severe despite trials of gabapentin, duloxetine, bupropion and narcotics. “The patient was unhappy with associated adverse effects, especially drowsiness and recurrent constipation,” the authors wrote. [1]

Surgical treatments for pain due to Lyme disease

Two surgical procedures were performed, which improved the patient’s pain. First, the man had a spinal cord stimulator surgically placed in the Dorsal Root Ganglion to mask the pain signals before they reach the brain. The pain dropped to a level 3 out of 10.

A spinal cord stimulator alone does not come cheap. “The Journal of Neurosurgery: Spine published an article estimating the cost per patient of spinal cord stimulator implantation at $32,882 for Medicare patients and $57,896 for Blue Cross Blue Shield, with annual maintenance reaching $5,071 to $21,390,” wrote Laura Dyrda in Becker’s spine review. [2]

The doctors then surgically placed a pulse generator in the right paraspinal-flank area. The patient reported the pain dropping to level 0-2. Narcotics were rarely needed and the man was able to return to work as a health-care provider.

The authors stressed the need for novel approaches to pain management for patients with pain associated with post-treatment Lyme disease syndrome.

Some of the following questions are addressed in the podcast:

  1. Have you seen severe pain in Lyme disease?
  2. What types of pain have you seen in Lyme disease?
  3. What is the treatment for Lyme disease pain?
  4. What is Post Treatment Lyme disease Syndrome (PTLDS)?
  5. What are the symptoms of PTLDS?
  6. What is controversial about PTLDS?
  7. What are your concerns with a surgical approach to Lyme disease pain?
  8. Would additional antibiotics have helped resolve the Lyme disease pain?

Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Karri J, Bruel B. Dorsal Root Ganglion Stimulation for Post-Lyme Disease Chronic Peripheral Neuropathic Pain. Neuromodulation. 2020.
  2. 5 Findings on Spinal Cord Stimulator Effectiveness for Failed Back Surgery Syndrome in Becker’s Spine,. Written by Laura Dyrda May 29, 2014. Last accesed April 22, 2020.

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**Comment**

I am happy to report that after dealing with pain of a magnitude I never knew existed before, I am PAIN FREE.  What got me here?  Antibiotics, herbs, blood ozone, and YEARS of treating this monster.  I want to offer hope that treatment can rid of you all pain or at least get you to a place you can manage it.

It’s truly unfortunate the ‘authorities’ made the decision that this man’s pain had nothing to do with a persistent infection.  The CDC/IDSA is directly behind this bad decision.  Antibiotics and other antimicrobials will not cost near as much as this surgical device, which comes with plenty of its own risks, BTW.

I had one experience where the pharmacist did not notify me they gave me 250mg tablets instead of 500mg so I was inadvertently taking half the dosage.  My pain shot through the roof.  When I finally read the bottle myself and realized the error, within ONE dose, PAIN GONE.  This little exercise taught me the importance of the right dosage.  Dr. Burrascano discusses this along with other treatment nuances: https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/

I highlight the video here:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Treatment for this takes finesse, savvy and experience.  Do not trust mainstream medicine with this or you may find yourself getting needless surgeries to mask something that appropriate treatment could resolve.  

Get to a LLMD asap:  https://madisonarealymesupportgroup.com/2020/11/25/what-makes-a-doctor-lyme-literate/

Category:

Activism, Lyme, Pain Management, research

Lyme & Morgellons Disease: The Growing Connection

https://rawlsmd.com/health-articles/lyme-morgellons-disease-the-growing-connection

Lyme + Morgellons Disease: The Growing Connection

Lyme + Morgellons Disease: The Growing Connection

by Jenny Lelwica Buttaccio
Posted 12/21/2020

On the surface, it has all the makings of a medical drama episode on a mystery illness: unexplained skin lesions, a widespread set of symptoms impacting physical and mental health, and contested medical debates over its validity. In real life, it’s known as Morgellons disease, an illness that affects 3.65 in 100,000 people each year, according to research in the online, peer-reviewed medical journal PLOS One.

In other words, it’s quite rare by medical community standards, but it’s no less distressing or life-altering for those who endure it. And while the cause of Morgellons is a matter of hot debate, emerging research suggests ties to Lyme disease and common coinfections.

A Closer Look at Morgellons Disease

Morgellons often presents with puzzling dermatological symptoms. Patients describe a variety of unusual skin problems such as unexplained sores containing colored, thread-like structures or filaments, intense itching, and sensations of crawling or being stung by insects. Patients may also report other phenomena like flecks or particles emerging from the skin that resemble sand, seeds, or other tiny granules.

Currently, the cause of the illness remains unknown, and arguments about whether the disease is psychological or physical have ensued. Some healthcare professionals believe Morgellons is psychological — the result of a kind of delusion known as “delusional parasitosis.”

Medical doctor and patient discussing and consulting in hospital examination room

In a delusion such as this, patients may hold an unwavering belief they have been infested with parasites, fleas, worms, lice, or other types of organisms. The problem with this theory, however, is that Morgellons patients often have multi-systemic symptoms that parasites alone don’t explain such as fatigue, joint pain, fibromyalgia, and difficulty sleeping, as stated in a case report in the Annals of Dermatology.

Previously, some clinicians believed the filaments in the skin might have come from textile fibers or, worse, placed there by the patients themselves. However, a 2013 study sheds new light on the illness by evaluating colored filaments from tissue specimens gathered from the calluses of four female patients. The findings revealed the filaments weren’t comprised of textiles or synthetic materials at all. Instead, they were made up of substances in the body, including keratin, melanin, collagen, and other proteins.

Moreover, researchers discovered the presence of borrelia species of spirochetes in the participants’ tissue samples, indicating an infectious process might be one of the underlying mechanisms behind this illness. The multi-symptom illness overlaps with the symptoms of chronic Lyme disease and coinfections, but with only small-scale research on the topic, there are many layers yet to peel back.

“It bothers me on all the accounts that some physicians have blown off Morgellons patients or accused them of putting fibers into their tissues,” says Bill Rawls, MD, Medical Director of RawlsMD and Vital Plan. “When you look at how microbes like borrelia work and how they destroy collagen, it’s plausible that they are an underlying factor in this illness.”

Immune reaction. Admirable worried pretty girl visiting her doctor who carefully studying red spots on her skin while wearing medical gloves

In a 2016 study, researchers suggest the “dermopathy” (patches, spots, or lesions on the skin) of Morgellons is connected to tick-borne diseases, and they’ve discovered several species of borrelia in skin specimens: Borrelia burgdorferi (the predominant species causing Lyme disease), Borrelia garinii, Borrelia miyamotoi, and Borrelia hermsii.

“Morgellons may be a variant of Lyme disease that happens to affect the skin,” says Dr. Rawls. But it may develop in only a fraction of people who contract the tick-borne disease.

To date, there is no consensus on what causes Morgellons or why it affects some people and not others. Despite an association with borrelia, many health experts remain skeptical that the illness is brought about by an infection. Though Morgellons is a misunderstood and controversial illness, funding is needed for research, and awareness is of the utmost importance so that patients can get an accurate diagnosis.

Let’s explore some of the signs, symptoms, diagnostics, and treatment strategies for Morgellons.

Symptoms of Morgellons Disease

People with Morgellons can have a variety of symptoms, affecting multiple systems of the body. The symptoms include:

Diagnosing Morgellons Disease

Morgellons can be difficult to diagnose, notes Dr. Rawls, especially if healthcare providers don’t know enough about the illness to look for it. The Charles E. Holman Morgellons Disease Foundation (CEHF), a nonprofit aimed at supporting awareness, education, and advocacy efforts, recommends seeing a Lyme-literate medical doctor (LLMD) to evaluate the presence of Lyme or other tick-borne diseases.

There isn’t a specific test to detect for Morgellons, but doctors may diagnose it if a person has slow or non-healing wounds, fibers in the lesions, or crawling or itching sensations of the skin. Skin samples may be tested for the presence of bacterial infections like Borrelia burgdorferi or Staphylococcus. Lyme specialists may also use testing from laboratories such as Igenex to confirm whether Lyme may be a factor in the illness.

Treatment of Morgellons Disease

There is no singular approach to the treatment of Morgellons that will work for everyone. Realistically, there’s a lot of trial and error to figure out what strategies will be most effective for the illness.

A good treatment approach focuses on comprehensive ways to improve multi-systemic symptoms and address pathogens such as borrelia and coinfections like bartonella and babesia. Treatment protocols may also include topical medications to address infections of skin lesions or referrals to mental health professionals if psychiatric manifestations of the illness occur.

Incorporating Herbal Therapy

Natural remedies might play a role in managing symptoms and helping you feel better as well. “Because borrelia may be a component of Morgellons disease, I think herbal therapy is an essential foundation to a recovery program,” says Dr. Rawls. Though there’s a lot we still don’t know about the illness, herbs suppress a variety of harmful microbes, balance the immune system, and improve energy — all of which will have a positive effect on symptoms.

Though herbs aren’t a proven method of treatment for Morgellons, they have a low risk for toxicity and side effects. So it might be worth discussing the benefits and risks with your healthcare provider to see if natural therapies could help restore your health. Some foundational herbs to explore include:

cats claw bark

Cat’s Claw

Cat’s claw is native to the Amazon region. The herb is a staple among Lyme disease protocols due to its antimicrobial qualities. It also contains immune-modulating properties to quiet an overactive immune system and reduce inflammation. It has historical use in alleviating the pain associated with arthritis, too.

Suggested dosage: 400-800 mg two to three times daily (inner bark standardized to 3% alkaloids or 10:1 concentrate inner bark is preferred). It is especially important to take this herb with food, as it is activated by stomach acid. If you take acid-blocking drugs, cat’s claw won’t have a significant impact on you.

Side effects: The herb is generally well tolerated, but occasional stomach upset has been reported.

andrographis white flower on green leaves

Andrographis

Native to India, andrographis has antibacterial, antiviral, and antiparasitic properties to defend against a spectrum of microbes. The herb has immune-enhancing, cardioprotective, and liver-protective qualities. Like cat’s claw, andrographis is a staple among natural Lyme protocols.

Suggested dosage: 200-800 mg (extract standardized to 10-30% andrographolides) two to three times daily

Side effects: Approximately 1% of people who take andrographis develop an allergic reaction with whole-body hives and itching skin. This is a higher percentage than most other herbs. The reaction will resolve gradually over several weeks once the herb has been discontinued.

red berberine berries hanging from steam

Berberine

Berberine is an antimicrobial herb and helps to restore balance to the microbiome.

Suggested dosage: The dose will vary depending on the preparation used.

Side effects: In most cases, berberine is generally well tolerated. Side effects may include gastrointestinal discomfort and low blood pressure.

full garlic bulbs

Garlic

Garlic has been used for medicinal purposes since the beginning of recorded time. The active ingredient in garlic is called allicin, and it has antiprotozoal, antiviral, and antifungal properties. Also, it assists in supporting the immune system and balancing the flora of the microbiome.

Suggested dosage: 180-1200 mg of a stabilized allicin product two to three times daily (dosage is dependent on the garlic preparation used)

Side effects: Raw garlic may cause stomach upset, but stabilized allicin products are associated with few side effects and are generally well tolerated.

orange reishi mushrooms

Reishi Mushroom

As a medicinal mushroom, reishi contains adaptogen properties and is antimicrobial and immune-modulating. The herb reduces inflammatory cytokines and supports the immune system’s ability to combat pathogens. Reishi supports the liver and heart as well.

Suggested dosage: 1-2 grams (1000-2000 mg) whole mushroom powder or 150-500 mg standardized extract (minimum 20% beta-glucans preferred) two to three times daily.

Side effects: Reishi tends to be well tolerated with rare side effects and no known toxicity.

purple chinese skullcap flowers

Chinese Skullcap

As a multi-purpose herb, Chinese skullcap has antimicrobial properties, dampens cytokines, and supports immunity. It works synergistically with other herbal remedies to enhance their effectiveness. It also has naturally-occurring melatonin, which may help to induce sleep.

Suggested dosage: 400-1000 mg two to three times daily. Note that American skullcap does not offer the same antimicrobial properties and should not be substituted.

Side effects: Even at high doses, side effects are rare and often limited to gastrointestinal discomfort.

Helpful Resources

The following list provides further information about Morgellons and helpful organizations. (A special thank you to CEHF, who assisted in compiling these resources.)

  • Charles E. Holman Morgellons Disease Foundation (CEHF): A nonprofit geared toward education, advocacy, and awareness of the illness
  • BCA Clinic: A clinic in Germany specializing in the treatment of tick-borne diseases, including Morgellons
  • Donovan Hair Clinic: A Canadian hair clinic led by dermatologist Jeff Donovan, MD, PhD, specializing in hair loss and Morgellons disease
  • Morgellons: The Legitimization of a Disease: A book aimed at separating fact from fiction regarding the condition and serving as a resource to patients and caregivers
  • Oklahoma State University Center for Health Sciences: Provides information and education and is advancing the knowledge of Morgellons through research
  • Skin Deep: The Battle Over Morgellons: A documentary chronicling a nurse’s quest to discover the truth about the disease as she confronts skeptics in the medical community

Final Thoughts

“We don’t know that much about Morgellons yet, and our perception is that it’s not that common,” says Dr. Rawls. Therefore, he warns that many patients will likely see several doctors before finding one who is willing to investigate the root cause more thoroughly and try various treatment approaches.

“When physicians are confronted with something they don’t know, they have two choices: One is to look further into it. The other is to try to make things go away as fast as possible,” says Dr. Rawls. “I hope we can become the type of medical community who looks further into it and seeks to help Morgellons patients as best as we can.”

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

Learn About Dr. Rawls’ Herbal Protocol »
REFERENCES
1. Delusional Parasitosis. Merck Manual website.
https://www.merckmanuals.com/home/skin-disorders/parasitic-skin-infections/delusional-parasitosis
2. Latest Information. Charles E. Holman Morgellons Disease Foundation website. https://thecehf.org/
3. Middelveen MJ, Mayne PJ, Kahn DG, Stricker RB. Characterization and evolution of dermal filaments from patients with Morgellons disease. Clin Cosmet Investig Dermatol. 2013;6:1-21. doi:10.2147/CCID.S39017
4. Ohn J, Park SY, Moon J, Choe YS, Kim KH. Morgellons Disease. Ann Dermatol. 2017;29(2):223-225. doi:10.5021/ad.2017.29.2.223
5. Pearson ML, Selby JV, Katz KA, Cantrell V, Braden CR, Parise ME, Paddock CD, Lewin-Smith MR, Kalasinsky VF, Goldstein FC, Hightower AW, Papier A, Lewis B, Motipara S, Eberhard ML; Unexplained Dermopathy Study Team. Clinical, epidemiologic, histopathologic and molecular features of an unexplained dermopathy. PLoS One. 2012;7(1):e29908. doi: 10.1371/journal.pone.0029908
6. Savely VR, Stricker RB. Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology. Clin Cosmet Investig Dermatol. 2010;3:67-78. Published 2010 May 13. doi:10.2147/ccid.s9520
 
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For more:  

Category:

Lyme, Morgellons, research, Treatment, Uncategorized

2020: The Lyme Year in Review

https://globallymealliance.org/2020-the-lyme-year-in-review/

Year-in-review-blog-graphic

by Jennifer Crystal

By any definition, 2020 has been a difficult year. When I considered writing my annual “Year in Review” post, I at first thought, can’t we just forget 2020 altogether? But from the Lyme perspective, there actually have been a lot of advances in 2020, and they’re worth celebrating. Below, I’ll outline some of the strides made in Lyme research, fundraising, and awareness in 2020.

RESEARCH

While many scientists have been focused on COVID-19 this year, Lyme disease researchers have still been hard at work during the pandemic. Here are some highlights of what Global Lyme Alliance’s research partners have been up to:

  • Brian Fallon, MD, MPH (Columbia University) and Michael Benros, MD, PhD (University of Copenhagen) conducted a study of all persons living in Denmark from 1994-2016 (~7 million people). They assessed the risk of mental disorders and suicidal behaviors among all individuals diagnosed with Lyme borreliosis (~17,000 patients). The authors unequivocally concluded that individuals diagnosed with Lyme borreliosis had increased risk of mental disorders, affective disorders, suicide attempts, and suicide. This study assessing the relationship between Lyme disease and psychiatric disorders (link: https://globallymealliance.org/the-quiet-desperation-of-chronic-and-mental-illness/) is the most statistically powerful ever conducted due the sheer number of patients evaluated. The results of this study are under review for publication by The American Journal of Psychiatry.
  • Monica Embers, PhD (Tulane University) is studying the relationship between dementia and microbial infection with bacteria, viruses, and fungi. Her continuing studies that include patients diagnosed by Dr. Brian Fallon with neurological Lyme disease have definitely revealed the presence of Borrelia burgdorferi spirochetes by PCR and fluorescence microscopy in three Lyme disease patient autopsy samples. One patient was characterized by Lewy body dementia pathology and disease presentation. Although this latter patient did not meet a clinical definition of Alzheimer’s disease (AD), studies are underway to assess the diseased tissue of AD patient specimens for multiple microbes. These findings are incredibly important because they are the most carefully conducted studies, including hundreds of negative controls, to definitively prove that patient brains actually do contain spirochetes.
  • Klemen Strle, PhD (New York State Department of Health) is studying host genetic factors in the development of Lyme Disease and Post Treatment Lyme Disease Syndrome (PTLDS). The objective of this project is to better understand how an individual’s genetic makeup impacts the clinical presentation of Lyme disease. Dr. Klemen has identified a new group of genetic signatures that are found at higher frequency in patients with Lyme disease and appear to be a risk factor for chronic, antibiotic-refractory Lyme arthritis. Dr. Strle is now studying neurological Lyme disease patients to see whether they also have a unique genetic signature that could serve as a marker for genetic tests, to identify those individuals predisposed to neurological complications even before such symptoms develop.
  • Nicole Baumgarth, DVM, PhD (University of California-Davis) is studying long-term infections of Borrelia burgdorferi in mice. This work, as well as teaching and training of students, has continued remotely during quarantine.
  • Lise Nigrovic, MD, MPH (Boston Children’s Hospital), directs the Pedi Lyme net, a GLA-funded network of emergency room pediatricians in seven states. The network collects biospecimens from suspected tick-borne disease patients. These specimens will be used to develop new diagnostics and to understand Lyme and other co-infecting pathogens in children.

For more on research and publications, check out these previous blogs:
Lyme disease Research Remains Active During Pandemic
Why Good Science Is Crucial 

FUNDRAISING

Despite a tough year for our economy, Global Lyme Alliance and its partners are still working hard to raise money for Lyme disease research, awareness, education, and treatment efforts. In October, GLA and Avril Lavigne hosted a virtual #FightLyme With Avril and Friends concert, in which stars like Wilmer Valderrama, Rob and Marisol Thomas, and Alessia Cara raised funds for and brought awareness to this disease that impacts over 400,000 people a year.

Other organizations such as Ride Out Lyme and the LivLyme Foundation are working as hard as ever on financial support for Lyme disease patients. For more information on fundraising and resources, please visit https://globallymealliance.org/financial-assistance/. To support GLA’s continued efforts during these challenging times, please visit us here at our 2020 Year-End Appeal.

AWARENESS

In May, as the pandemic was raging, Lyme awareness month was still going on. This year Global Lyme Alliance ran a “One Bite is All it Takes” campaign. The goal of the campaign was to raise awareness about tick prevention, especially this year when people were spending even more time outside. Outreach efforts of this campaign reached over half a million people. The Bang the Drum Foundation matched up to $100,000 in this campaign that raised a total of $152, 680.

And while I’d never wish for a global pandemic-especially one that has taken the lives of so many people—to have to happen in order to bring awareness to Lyme and other illnesses, one silver lining of COVID-19 is that it has put complex illnesses on the map. Lyme patients often feel alone and misunderstood when their lives are on hold, but during the pandemic, the whole world has been paused for illness. People who are otherwise healthy have seen firsthand what life is like for the chronically infirmed, and this has created greater understanding and empathy. Words like “immunocompromised” and “long-hauler” have become part of the vernacular. The world’s eyes have opened to faulty diagnostic tests, restrictions, and the nagging question of, “when will this ever end?”.

As 2020 finally draws to a close, there is much to be grateful for in the Lyme world. I wish for a healthy 2021 for Lyme patients, their families, and the world.

For more blog posts, click here.

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**

Please remember the only reason COVID-19 is classified as a ‘pandemic’ is due to the WHO changing the definition. It continues to have the same mortality rate as the seasonal flu.  Also, it is now a well known fact that testing for COVID-19 is designed to give positives to create a ‘casedemic’ – which is being used to perpetuate continued fear so people will submit to lock-downs, mask wearing and taking an extremely dangerous vaccine,  that thousands of medical professionals are warning the public against.

Now onto the latest Lyme/MSIDS research……

While not belittling the helpful work being done, I think it’s important to be honest.  

In my experience, those making forward progress in tick-borne illness research are nearly always independently financed.  They have zero ties to anyone who can pull strings for a pre-determined outcome.  Lyme/MSIDS research is riddled with bias and false assumptions that have ruled research for decades.  Most of the researchers have severe conflicts of interest.  This is a fact.  A fact that has played out for over 40 years and continues on. Any involvement with government and even university funding almost certainly dooms whatever Lyme/MSIDS research is being done.

Independent researchers barely get any recognition, and are often sanctioned, yet are changing the landscape with their work that defies the CDC/IDSA narrative.

Second, the Tick-borne Disease Working Group was a complete waste of tax-payer money.  While not mentioned in this article, it is a widely publicized group working at the federal level – supposedly for Lyme patients.  Patients watched with continued dismay at the shenanigans within this group.  While patients continue to hold their breath hoping for a new outlook for the diagnosis and treatment of Lyme, the result of this group’s efforts is a more entrenched paradigm in the “New IDSA Lyme Guidelines”.  This article explains it well.

The resulting continued denial of chronic/persistent Lyme/MSIDS affects every single aspect of research.  The same mythology of the disease(s) and abysmal testing continue on unabated.  We need to STOP supporting research efforts that do not help patients.  

The quote: “Insanity is doing the same thing over and over and expecting different results,” comes to mind.

We desperately need post-mortem work to settle the chronic/persistent issue once and for all:  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/

Without this crucial, foundational work research will continue to be built around a false paradigm that continues to belittle and marginalize very ill patients who have to pay out of pocket and travel vast distances to see doctors who treat this appropriately.  Doctors who dare to treat this appropriately continue to be hunted down and crucified on the Lyme crucible.

 

Category:

Activism, Lyme, research