Archive for the ‘Lyme’ Category

Alternative Treatments for Lyme Disease Symptoms Brings New Hope

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Alternative Treatments for Lyme Disease Symptoms Brings New Hope

Sept. 21, 2021

News Center Maine

The multi-step, laser therapy treatment targets the biofilm that surrounds the bacteria that causes Lyme disease.

Correction: 

The news segment falsely states that only 25% go on to suffer from lingering symptoms.  This article, reveals that they achieve that low number by only counting patients who are diagnosed and treated early.  There is a much larger patient group (30-40%) that due to being undiagnosed or misdiagnosed, that is diagnosed and treated much later (months to years).  When you simply add the two groups you discover that 60% of patients go on to suffer sometimes life-long symptoms. This is a big deal and needs to be corrected, but the CDC is constantly manipulating criteria and numbers for a pre-determined outcome that fits their accepted narrative.  And the accepted narrative for Lyme/MSIDS has always been and continues to be that it is hard to catch and easy to treat.

Some reasons these numbers matter:

  • using the faulty 25% downplays a real problem that is much larger in scope
  • research projects are typically done on issues involving the most people, so those suffering from persistent symptoms continue to be ignored in research
  • in order to qualify for entrance into research studies:
    • patients must test positive on the abysmally inaccurate 2-tiered CDC serology test that misses more than 70% of all cases and here 86%
    • patients must have the EM rash which is often missed or mischaracterized by physicians, can look different on patients, and which is often missing altogether in many
    • have a positive diagnosis which in a maddening never-ending loop is based on faulty testing 
Chronic Lyme patients are continually kicked to the curb due to faulty parameters that are regurgitated like a 3 year old reciting the alphabet with no understanding of it. 

I’ve posted on lasers before and we had a practitioner speak about them at support group. 

Please see:

Of course there are numerous types of lasers and the one presented in the news story is different then the class IV laser which I have had treatments with. Unlike the one presented in the news story, the class IV laser is very hot and must be moved continually or it would burn you.  The best way to describe the feeling is that it feels like your muscles have turned to butter.  I would compare it to a massage without the pain. It’s relaxing and quite effective against pain.  It does come with a price – when I had it done it was about $100 for about a 40 min. treatment.  I do highly recommend Raymond as he is not only trained with the laser but is a naturopath with great ideas. 

Until testing can distinguish between whether we are in active infectious state or just suffering from lingering symptoms that antimicrobials will not solve we are Guinea Pigs trying this and that for relief.

I’ve found the following things all help with pain:

Lastly, for me I had chronic headaches that felt like a horse kicked me in the head.  Seriously, I never knew that people could survive such unbelievable pain. Mostly at the brain stem (occipital area), the inflammation was so severe I eventually had a MRI to rule out Chiari.  I found that daily minocycline (a drug known to cross the blood/brain barrier) truly was one of the most effective things I used (I would put tinidazole in this category as well).  I do feel it’s important to layer treatment to mitigate any antibiotic resistance, so we always took 2-3 other antimicrobials simultaneously as well as pulsed diflucan to mitigate any yeast issues.

 

 

Small Fiber Neuropathy in Lyme Disease & COVID

https://danielcameronmd.com/neuropathy-in-lyme-disease-covid-19/

Small fiber neuropathy in Lyme disease and COVID-19

person with neuropathy due to lyme disease rubbing their foot

Small fiber neuropathy (SFN) is a disorder that affects the small sensory cutaneous nerves, resulting in unusual sensations such as tingling, pins-and-needles and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. In most patients, these symptoms start in the feet and progress upwards.¹

Small fiber neuropathy with autonomic and sensory dysfunction has been described in Lyme disease patients. In fact, a small study suggests that SFN may be a viable biomarker of post-treatment Lyme disease syndrome, particularly for patients whose main symptoms involve sensory issues.²

In their article, “Resolution of Pain in the Absence of Nerve Regeneration in Small Fiber Neuropathy Following Treatment of Lyme Disease,” the authors describe the case of an 83-year-old woman with a 4-year history of diffuse burning pain in her face, arms, and legs, and muscle spasms in the legs.³

Lyme disease causes small fiber neuropathy in an elderly woman. Complete resolution of symptoms after antibiotic treatment.

Lyme disease testing was positive. “She was then treated with a 40-day course of oral antibiotics for Lyme disease with complete resolution of her neuropathic symptoms.”

“Painful small fiber neuropathy may be a manifestation of Lyme disease,” the authors suggest. “Antibiotic treatment of Lyme disease can result in resolution of the neuropathic pain symptoms.”

Small fiber neuropathy and COVID-19

Now, small fiber neuropathy is being recognized in patients with COVID-19.

Investigators describe the clinical presentation of SFN associated with COVID-19 in two patients.4

Patient 1

A 52-year-old man, who contracted SARS-CoV-2, developed moderate respiratory problems (shortness of breath and productive cough).

“About 3 weeks later, he began to experience burning pain in the feet that spread up to the knees that was associated with imbalance and falls,” the authors explain.

“The pain would wake him at night, impacted his functional capacity, and was associated with allodynia.” (Note: Allodynia is the experience of pain from stimuli that typically is not painful, for example, light touch.)

He was diagnosed with small fiber neuropathy based on symptoms and test results.

The patient’s symptoms were “most compatible with a small fiber-predominant sensory neuropathy unmasked by COVID-19 infection.”

His neuropathic symptoms improved with gabapentin, and a topical lidocaine cream improved his neuropathic symptoms.

Patient 2

A 67-year-old woman with a 10-year history of mild acral tingling and burning pain had been diagnosed with small fiber neuropathy associated with psoriatic arthritis, based upon biopsy results.

Her symptoms had been stable for 10 years until she contracted SARS-CoV-2 and developed severe burning pain in her hands and feet.

“She presented 6 months later with persistent symptoms and occasional orthostasis.”

Her examination and test results supported a diagnosis of small fiber neuropathy.

“This is an example of a chronic pre-morbid sensory and small fiber-predominant autonomic neuropathy exacerbated by COVID-19 infection,” the authors write.

This study was observational and “cannot draw reliable conclusions regarding causative relationships or underlying mechanisms.”

References:
  1. Johns Hopkins Medicine. Neurology and Neurosurgery. https://www.hopkinsmedicine.org/neurology_neurosurgery/
  2. Novak P, Felsenstein D, Mao C, Octavien NR, Zubcevik N. Association of small fiber neuropathy and post treatment Lyme disease syndrome. PLoS One. 2019;14(2):e0212222. doi:10.1371/journal.pone.0212222
  3. Resolution of Pain in the Absence of Nerve Regeneration in Small Fiber Neuropathy Following Treatment of Lyme Disease (P06.228) Naomi Feuer, Armin Alaedini Neurology Feb 2013, 80 (7 Supplement) P06.228;
  4. Shouman K, Vanichkachorn G, Cheshire WP, et al. Autonomic dysfunction following COVID-19 infection: an early experience. Clin Auton Res. Apr 16 2021;doi:10.1007/s10286-021-00803-8

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**Comment**

For pain we have also found gabapentin to be extremely helpful as well as LDN, CBD, and MSM.  I’ve also used lidocaine patches with good success as well as a pain cream you can make yourself either with or without DMSO, which is a very powerful pain killer but please read and learn about it before using. You can also purchase ready-made DMSO creams but realize they are often stored in plastic and have other ingredients that are potentially harmful. The plastic issue is important because DMSO is a carrier/penetrating agent which will absorb/penetrate anything in or around it.

For more on small fiber neuropathy and Lyme/MSIDS:

LDN Webinar

https://www.belmarpharmasolutions.com/resources/clinician-resources/clinician-library/the-ldn-book-volume-two/

**Please note this webinar occurred last year; however, they are making it available to all now.  Just go to the link, fill out info. and you will be directed to the Webinar that already took place.**

The LDN Book: Volume Two

October 12, 2020

By: Belmar Pharmacy

Belmar Pharmacy is presenting the launch of Author and Low Dose Naltrexone (LDN) Advocate, Linda Elsegood’s latest book, The LDN Book Volume 2.

Dr. Angela DeRosa, Belmar Pharma Solutions Medical Director and Tracy Crawford, Director of Customer Experience, speak with authors Linda Elsegood, Darin Ingels ND, FAAM, Olga Cortez MD, and Leonard Weinstock MD about their LDN expertise and their contributions to the book.

Also hear from, Samantha Lebsock, PharmD at Belmar Pharmacy – she will share her extensive knowledge of LDN from a compounding pharmacist perspective. 

This webinar is engaging for both practitioners and patients interested in learning more about LDN and how to get their hands on The LDN Book Volume 2 and all it has to offer.

Conversations contain some of the reasons practitioners prescribe LDN, including:

  • Autoimmune
  • Women’s Health
  • Lyme Disease
  • Thyroid
  • Chronic Skin Conditions
  • Gut Health

This webinar is intended for patients and prescribers. If you would like to watch the webinar, please fill out in the top link. You will be re-directed to the recording after the successful completion of the form.

For more on LDN:

Can Lyme Disease Cause Bone Loss?

https://danielcameronmd.com/lyme-disease-bone-loss/

Can Lyme disease cause bone loss?

man with lyme disease having leg bone examined by doctor

Arthritis is a well-known manifestation of Lyme disease. And although studies have detected Borrelia burgdorferi (Bb) by culture and PCR in bone and marrow of humans and dogs,¹ little is known about the effects of Bb infection on bone tissue, outside articular surfaces.

In a 2003 case report, “Bone marrow manifestation of Lyme disease (Lyme Borreliosis),” Kvasnicka et al.² describe a 35-year-old man, who presented with fever, night sweats, inguinal lymph node enlargement and splenomegaly. He also exhibited neurologic symptoms including hyperkinesis and ataxia.

Based on results from a lumbar puncture, doctors initially suspected the patient had infectious meningoencephalitis. However, a bone marrow trephine biopsy was also performed and revealed several small- to intermediate-sized epithelioid granulomas, according to the authors.

“Bone marrow abnormalities have rarely been reported in Lyme borreliosis. In this patient the bone marrow lesions had a characteristic ring-like appearance” which is occasionally seen with infectious diseases.

Western blot testing showed “an increased IgM antibody titre for Borrelia burgdorferi indicating a recent infection,” writes Kvasnicka et al.

The patient was treated with antibiotics and recovered.

The authors suggest “In patients with neurological symptoms, fever and granulomatous myelitis, an early disseminated infection with Borrelia burgdorferi, should be considered in the differential diagnosis and specific serological tests should be performed.”

Lyme disease induces bone loss in mice

In their article “The Lyme Disease Pathogen Borrelia burgdorferi Infects Murine Bone and Induces Trabecular Bone Loss,” investigators provide the “first evidence that B. burgdorferi infection induces bone loss in mice and suggest that this phenotype results from inhibition of bone building rather than increased bone resorption.”

The authors examined “whether B. burgdorferi infection affects bone health in mice,” and point out that “bone pathologies are observed in diseases associated with other spirochete bacteria, including syphilis and periodontitis.”

“Bone pathologies are observed in diseases associated with other spirochete bacteria, including syphilis and periodontitis.”

Other studies have found that long bones from mice infected with Borrelia burgdorferi tended to be more brittle than bones of mock-infected controls.

The authors found that “B. burgdorferi infection in mice causes a level of osteopenia in the trabecular regions of long bones that would be considered a clinically significant finding in humans.”

However, “structural and biomechanical properties of cortical bone were not affected by infection.”

References:
  1. Tang TT, Zhang L, Bansal A, Grynpas M, Moriarty TJ. The Lyme Disease Pathogen Borrelia burgdorferi Infects Murine Bone and Induces Trabecular Bone Loss. Infect Immun. 2017;85(2):e00781-16. Published 2017 Jan 26. doi:10.1128/IAI.00781-16
  2. Kvasnicka HM, Thiele J, Ahmadi T. Bone marrow manifestation of Lyme disease (Lyme Borreliosis). Br J Haematol. 2003 Mar;120(5):723. doi: 10.1046/j.1365-2141.2003.04084.x. PMID: 12614200.

When Crossfit Crosses Paths With Lyme Disease

https://www.lymedisease.org/crossfit-crosses-paths-lyme/

TOUCHED BY LYME: When Crossfit crosses paths with Lyme disease

Sept. 17, 2021

CrossFit is a competitive sport that incorporates elements of weightlifting, gymnastics, and other vigorous athletic endeavors. Suffice it to say, people who excel at this must be in tiptop shape and full of energy.

That’s why it’s so remarkable that 17-year-old Mallory O’Brien, named CrossFit’s 2021 “Rookie of the Year,” has recently experienced a prolonged and debilitating case of Lyme disease.

According to an article by Nicole Payton on the CrossFit Games website:

“For more than a year, O’Brien suffered from severe headaches and exhaustion before she was diagnosed with Lyme disease. She recalled having two tick bites around ages 10 or 11, but it wasn’t until right before the 2019 CrossFit Open, when she was 15, that she started feeling the effects of the disease.…Unable to train as she was accustomed to, let alone compete in 2020, she made the wise decision to pull back the throttle, and allow her body and mind time to recover.”

Mallory said her headaches were “severe, daily, and lasting all day.”

How did she do it?

How did she recover and return to such a physically demanding sport? Mallory attributes it to “a combination of focused treatment, sound nutrition, and functional fitness.”

Furthermore, she said, “I became very aware of how nutrition and vitamins can heal our bodies and learned to look at food labels so that I know what I’m putting into my body. I’m really into healing my body naturally now and understanding the science behind nutrition and natural medicine.”

Payton’s article continues: “She has demonstrated an enormous amount of resilience in her recovery from Lyme disease, and she has a few words of encouragement for anyone suffering from the disease and losing hope.”

“Never give up! I was told so many times that there was nothing wrong with me, or that they couldn’t explain my symptoms,” O’Brien said.

“It felt like no one was listening. My mom and I became obsessed with finding an answer. We knew there was no way this was not explainable. Trust your instincts. You know your body better than anyone! Find a doctor that listens to you and is committed to helping you.”

Click here to read the whole article.

Note: The photos accompanying this blog are from Mallory’s Instagram page.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .