Archive for the ‘Treatment’ Category

Why is Lyme Difficult to Treat & What About Dormant Spirochetes?

https://www.globallymealliance.org/blog/dear-lyme-warrior…help-1

Dear Lyme Warrior…Help! Lyme Treatment and Dormant Spirochetes

by Jennifer Crystal on September 26, 2021

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >Dear Lyme Warrior...Help! Lyme Treatment and Dormant Spirochetes</span>
Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.
Why is Lyme disease so difficult to treat?

Lyme disease is not always difficult to treat. If it is caught early and treated effectively, the infection can be cleared with a few weeks of antibiotics. Some 10-20% of people treated for Stage 1 Early Localized Lyme Disease do go on to experience persistent symptoms, sometimes referred to as Post Treatment Lyme Disease Syndrome (PTLDS). For some patients, this may be due to persistent infection that requires further treatment. Researchers are also studying the role of immune dysregulation, debris left over from Lyme disease, and ongoing inflammation as potential causes (not necessarily mutually exclusive) for ongoing symptoms. GLA-funded research has also identified biofilms, which form a protective layer around Lyme disease bacteria so that antibiotics can’t kill them, as a reason for persistent disease.

PTLDS refers to patients whose Lyme disease was caught and treated early but whose symptoms persist. Due to nebulous symptoms and faulty diagnostic tests, many patients are not diagnosed until Stage 2 (Early Disseminated Lyme Disease) or Stage 3 (Late Disseminated Lyme Disease). Those infections are more difficult to treat because they have spread to other parts of the body and, in Stage 3, have crossed the blood-brain barrier. Lyme disease bacteria, called a spirochete, coils into cells, bones, and joints, and away from antibiotics. Lyme infections can also be more difficult to treat when a person is co-infected with another tick-borne disease. Some co-infections, like babesiosis, require different treatment than Lyme disease; if a person doesn’t know they’re co-infected, they may only be fighting half the battle.

The other tricky part about tick-borne disease is that no two cases are alike. In addition to factors like how long it took for someone to get diagnosed and whether they’re co-infected, each person reacts differently to treatment. The protocol that works for one person might not work for another. Individual immune response, as well as other underlying conditions (for example, I also have chronic active Epstein-Barr virus), can make Lyme disease more difficult to treat. The most important thing is to make sure you’re in the hands of a good Lyme Literate Medical Doctor (LLMD) who can create a treatment plan tailored for your specific case.

Do Lyme bacteria lie dormant, waiting to interfere with healing from surgery or other medical conditions?

Lyme bacteria (spirochetes) can go into a dormant state and flare during periods of stress, including acute medical issues. Spirochetes love scar tissue, so surgery can particularly have the potential to rile them up. This does not mean this will be the case for all Lyme disease patients, however. As I mentioned in response to the previous question, if your Lyme disease was caught early and treated effectively, the infection could be completely cleared. Lyme disease that isn’t caught for months or years—called Stage 3 or Late Disseminated Lyme Disease—is much more difficult to treat, especially if complicated by co-infections. In these cases, the infection can be battled into remission, with bacteria going into a dormant state but relapsing from time to time.

My own flare-ups have tended to happen during stressful transitions such as starting a new job, moving, or going through a breakup. Pushing myself too hard physically or neurologically can cause setbacks, too. When I had knee surgery that took much longer than expected to heal, I’d unknowingly been harboring Lyme disease, babesiosis, ehrlichiosis, and possible bartonella for three years, but hadn’t yet been diagnosed or treated. Because the infections were running unchecked in my body, they interfered with healing. Had I already been treated for tick-borne disease, my recovery from that surgery probably would have been much faster.

Since being treated for tick-borne disease, recovery from other surgeries has been appropriate. I’ve had a breast excision and wisdom teeth removal with no Lyme disease flares. My doctor prescribed additional antibiotics for a week or two pre-and-post operations. You might talk to your LLMD about taking this precautionary measure if you are facing surgery. It’s also important to give yourself enough time to heal, to nourish your body before and after surgery with anti-inflammatory foods, and to get adequate rest. Your LLMD may also want you to start or to increase immune-building supplements before surgery. I’ve taken these measures when dealing with other acute medical issues, including COVID-19, and they have helped me to heal without interference from flaring tick-borne disease.

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

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**Comment**

A few points:

  • Microbiologist Holly Ahern has written a marvelous piece that exposes that the oft repeated dogma that only 10-20% go on to have symptoms is false.  This percentage only includes those diagnosed and treated early.  There is a larger group of 30-40% that are diagnosed and treated late.  When you simply add the two groups you discover that up to 60% or more struggle with persistent symptoms.  This is important to clarify for many reasons.
  • People can jump from stage to stage in any random order.  People try and put this into a nice containable box when there is much that is unknown.  I wrote about the little girl who went out to play in the morning, got a tick bite above her eye, and in the total time of 4-6 hours lost the ability to walk or talk.  The idea that a tick must be attached for 48-72 hours before transmission is ludicrous, yet is also repeated ad nauseum as if it is established fact.
  • We need to drop the PTLDS moniker like a bad habit.  This acronym allows everyone to believe that persistent infection is a myth.  It also enables “experts” to say ludicrous things like Lyme patients just need to choose to be better, as if this complex disease(s) was simply an issue of mind over matter.
  • This article is a perfect example of how much still needs to be done to properly educate patients.

For more:

Category:

Lyme, Treatment

Alternative Treatments for Lyme Disease Symptoms Brings New Hope

http://  Approx. 3 Min

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.

 

 

Category:

Inflammation, Lyme, Pain Management, Treatment

FLCCC’s Guide to Overcoming the Pharmacy Barrier for Getting Ivermectin

The FLCCC’s Guide to Overcoming the Pharmacy Barrier

Based on many reports from patients, there appears to be a growing number of pharmacists who refuse to fill prescriptions for ivermectin—one of the safest drugs on the market today. To combat this violation of both the law and the oath taken by medical professionals, the FLCCC has created a guide for consumers to use in countering pharmacists and their refusal to allow patients access to an effective treatment for COVID-19.

Posted on the FLCCC homepage, flccc.net, the guide provides:

  • Information on the rights of the patient to have access to the medication prescribed by their doctor without interference from a pharmacist. 
  • A walk through of the misinformation that a pharmacist might use to not fill the prescription.
  • Actions the patient can take to counter the misinformation and alert the corporate leadership of the pharmacy if necessary. 

“The relationship we have with our patients is sacred and should not be compromised by pharmacists acting on their own. We are encouraged to see some of the large pharmacy chains taking action and ensuring our patients have their prescriptions filled.” said Pierre Kory, M.P.A., MD, president and chief medical officer of the FLCCC. “We want to make sure that the public knows their rights and has access to this important treatment.”

The guide can be found here: https://covid19criticalcare.com/wp-content/uploads/2021/09/Overcoming-Pharmacy-Barriers.pdf

The FLCCC Weekly Update—September 22, 2021
Dr. Pierre Kory and Dr. Paul Marik join host Betsy Ashton to provide several important updates.

  • 15:51—Physician/scholars called “fringe doctors”
  • 18:00—MATH+ Hospital Protocol update
  • 20:21—Dr. Paul Marik’s new landmark paper: “The Pathophysiology of COVID.” The mechanisms of COVID. Why it causes such sickness and death.
  • 23:25—The success of Uttar Pradesh against COVID
  • 34:30—How to counter pharmacists’ refusals to fill prescriptions for ivermectin.

For more information on the FLCCC, the science and our protocols, please visit www.flccc.net

**Comment**

I have heard that a Wisconsin doctor is now under scrutiny for prescribing Ivermectin for COVID. Evidently Walgreens turned this doctor in. And in France, Dr. Jean-Paul Theron was just arrested and drug out into the street like a criminal.

 Dr. Jean-Paul Theron arrested for prescribing ivermectin for COVID

In case you missed it, the AMA, AphA, and ASHP as well as the ABEM and FSMB are threatening doctors who prescribe ivermectin for COVID and for spreading “misinformation.” Sadly, a hit-piece in my local paper is following the accepted narrative. The title was, “Experts: Don’t Use Drug For Animals – Ivermectin Ineffective, Potentially Dangerous.”

It’s one of the worst pieces of journalism I’ve seen in a long time. First, stating Ivermectin is an “animal” medicine is like saying penicillin is an “animal” medicine since it too is used in animals as well as humans. Ivermectin is on the WHO list of essential medicines and has been used safely for decades for river blindness, scabies, and other human illnesses (as well as for animals). Shame on our corrupt public health ‘authorities’ and a complicit media for spreading these lies. And they are LIES of the biggest sort costing 500,000 lives according to one doctor. To learn why they are censoring this important, effective treatment watch the video in the first link below.

For more on Ivermectin:

Also see FLCCC’s website for COVID protocols for every stage of the illness:  https://covid19criticalcare.com/covid-19-protocols/

To find a doctor willing to prescribe effective COVID medication:  https://americasfrontlinedoctors.org/treatments/how-do-i-get-covid-19-medication/

Are you being pressured to get the dangerous COVID jab?  Read this:  https://madisonarealymesupportgroup.com/2021/08/30/covid-vaccine-mandates-if-i-dont-want-the-jab-what-are-my-options/

For more:

Hospitals have become “killing fields,” where patients are “medically kidnapped” and denied life-saving treatment.
Due to this, a new physician alliance called the Pandemic Health Alliance has formed.

Go here for a Sept. 13 interview with Steve Bannon, host of War Room: Pandemic, for an interview with Dr. Robert Malone, Dr. Heather Gessling, and Dr. Cole.  Many are trapped in hospitals, left to die, with no one to advocate for them.  And now pharmacies are blocking essential prescriptions such as Ivermectin and Hydroxychloriquin.

“We are in a situation where the government has seized control of the medical profession and this is causing death,” Malone said.

Category:

Activism, Treatment

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

By

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.”

Related Articles:

Autonomic dysfunction, small fiber neuropathy and Lyme disease

Femoral neuropathy and Lyme disease

Chronic inflammatory demyelinating polyneuropathy resolved with antibiotics

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

_________________

**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:

Category:

Lyme, Pain Management, research, Treatment, Viruses

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:

Category:

Activism, Inflammation, Lyme, Supplements, Treatment