Archive for the ‘Lyme’ 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

The Case of An Untreated Babesia Infection

https://danielcameronmd.com/untreated-babesia-infection/

The case of an untreated Babesia infection

Woman with untreated Babesia infection holding her head.

Babesia can be a severe and life-threatening tick-borne illness. In a recent article, Dr. Gary Wormser described a 61-year-old female with an untreated Babesia microti infection.¹ The woman’s IgM test for Lyme disease was positive, but it was dismissed as a false positive test.

By

In his article, Wormser discusses the case of a 61-year-old woman who went untreated for a Babesia infection, despite positive test results. The patient, who lives in Westchester, NY, a highly endemic area for Lyme disease, reportedly removed an unidentified tick from her left wrist at the end of March 2020, wrote Wormser.

In June, she developed intermittent fevers, joint pain, anorexia, and fatigue and was evaluated at the Lyme Disease Diagnostic Center (LDDC) in New York State.

Unfortunately, the patient did not have an erythema migrans rash. And, as a result was not treated for a tick-borne infection.

On July 30, 2020, the woman tested positive by PCR for Babesia but was not treated.

Two weeks later, she had a positive Lyme disease EIA and one IgM Western blot band. But she was still not treated for either Lyme disease or Babesia.

On August 26, 2020, her Lyme disease tests were positive by the CDC’s two-tier diagnostic criteria. She had a positive EIA and positive IgM Western blot test. Still, she was not treated for either Lyme disease or Babesia.

On December 11, 2020, the woman’s PCR test for Babesia and IgM Western blot test for Lyme disease were negative.  Her Lyme EIA remained positive.

I. scapularis ticks recovered from the environment that are infected with B. microti may be co-infected with B. burgdorferi.

The woman never developed more than two IgM Western blot bands for Lyme disease. And she never exhibited an erythema migrans (or Bull’s-eye) rash. If she had, it would have allowed Dr. Wormser to make the diagnosis of Lyme disease in a patient with Babesia.

As he states, “Diagnosing Lyme disease co-infection in patients with active babesiosis, as in patients with human granulocytic anaplasmosis, is more convincingly accomplished if objective clinical features of Lyme disease are present, such as an erythema migrans skin lesion.”

The woman’s fever resolved without treatment. But Dr. Wormser did not state whether the patient’s joint pains, anorexia, or fatigue had resolved. Neither did Dr. Wormser report whether there were any long-term sequelae from an untreated tick-borne illness.

Editor’s perspective:

I would have been uncomfortable leaving the woman untreated particularly since she had evidence of at least one tick-borne infection – Babesia.

Related Articles:

Case series: Wide range of Babesia symptoms and presentations

Babesia infections and tick-borne agents transmitted through blood supply

Podcast: Babesia treatment in two travelers

References:
  1. Wormser GP. Documentation of a false positive Lyme disease serologic test in a patient with untreated Babesia microti infection carries implications for accurately determining the frequency of Lyme disease coinfections. Diagn Microbiol Infect Dis. May 16 2021;101(1):115429. doi:10.1016/j.diagmicrobio.2021.115429

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I’m too angry to comment.  Wormser needs to retire.

For more:

Category:

Babesia, Lyme, research, Testing

Weaponized Ticks? House Passes Smith Amendment Seeking Answers (But Will Get None)

https://www.lymedisease.org/ticks-weaponized-amendment/

Weaponized ticks? House passes Smith amendment seeking answers

HHS funding for Lyme disease
Sept. 24, 2021

The House of Representatives this week passed an amendment offered by New Jersey Congressman Chris Smith, directing the federal government’s “watchdog” agency to investigate the Department of Defense’s (DOD) possible weaponization of ticks and other insects with Lyme disease during its consideration of the National Defense Authorization Act for Fiscal Year 2022 (H.R. 4350).

“In the spirit of transparency and accountability, my amendment directs the Government Accountability Office (GAO) to probe whether the Department of Defense ever weaponized ticks with Lyme disease or any other dangerous pathogen,” said Rep. Smith, the founding co-chair of the House Lyme Disease Caucus.

“Americans deserve the truth,” Smith said.

Millions with Lyme have a right to know

“The millions of Americans suffering from Lyme disease have a right to know whether any of this is true, and if any old research documents could be applied by current-day scientists to finding a better diagnostic or treatment—something that’s desperately needed,” said Smith, who has been advocating for Lyme patients and a more robust government response to the devastating disease since 1992.

Smith’s amendment requires the GAO to report findings to Congress of any DOD experiments on ticks or other insects for use as biological weapons from 1950 to 1977, including the experiment’s scope and whether any insects may have been “released outside of any laboratory by accident or experiment design.”
Similar amendments authored by Smith passed the House in 2019 and 2020, but did not make it through the Senate.

Questions raised by the book “Bitten”

The legislation comes in the wake of credible assertions made in numerous books and articles that significant research was conducted at Fort Detrick, Plum Island and elsewhere by the DOD to turn ticks into bioweapons causing severe disability, disease and even death to potential enemies.

One book—Bitten: The Secret History of Lyme Disease and Biological Weapons by Kris Newby—includes interviews with Dr. Willy Burgdorfer, the researcher credited with discovering Lyme disease who also worked as a bioweapons specialist.

Combined with access to Burgdorfer’s lab files, the interviews suggest that he and other bioweapons specialists stuffed ticks with dangerous pathogens.

“To stop the spread of these horrific tick-borne diseases, we must first understand their origins and how they came to be so pervasive,” Smith said.

“If the investigation concludes our government’s bioweapons program did not contribute to the proliferation of Lyme, we turn the page. And if it did, hopefully this investigation and research will contribute to a cure,” he said.

Smith’s amendment now moves to the Senate for consideration as part of the National Defense Authorization Act.

PRESS RELEASE SOURCE: The Office of Congressman Chris Smith

Related posts:

  1. House orders Pentagon to say if it weaponized ticks and released them
  2. News media amplify question of weaponized Lyme disease
  3. NEWS: Gibson amendment on Lyme disease passes House committee
  4. NEWS: House passes Lyme legislation; now on to the Senate

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https://lymediseaseassociation.org/government/federal-government/comptroller-general-investigation-of-ticks-vectors-biowarfare-passes-house/

Some things author Newby revealed for the first time in the book were: that ticks were developed and deployed as stealth biological weapons during the Cold War, and that Willy Burgdorfer, the scientist the Lyme bacteria, Borrelia burgdorferi, was named after, was at the center of this program. According to Newby, specific revelations she makes in book include:

  • A 1962 pilot study where infected ticks were dropped on Cuba sugar workers.
  • Releases of hundreds of thousands of radioactive, aggressive Lone Star ticks on the Atlantic coastal bird flyway.
  • Omissions of other microbes transmitted with Lyme-carrying ticks during the original outbreak (“Swiss Agent”).
  • Documentation of military studies where live disease-causing bacteria, some which can be spread by ticks, were sprayed from planes, boats and vehicles on the unsuspecting American public.

The Lyme Disease Association (LDA) encourages Lyme advocates, patients, and the public across the country to contact both of their US Senators to champion and support this amendment. After 45 years of Lyme disease, the truth must be uncovered.

Out of the 860 amendments offered for the National Defense Authorization Act (NDAA), only 476 were made in order, and this one was included in the even smaller number actually passed. This shows a huge interest by government to explore this issue of Lyme and tick-borne diseases. Also, an amendment for a government investigation passed twice before in the House in 2019 and 2020. This time we all need to help persuade the Senate to keep this amendment when both Houses go to the conference committee to iron out Senate and House bill differences.

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**Comment**
While it’s important to get answers, I won’t be holding my breath on this one.  This is like asking the pot to call the kettle black. All we have to do is look at the COVID debacle to determine that even with all the evidence in hand, the very people/organizations who created this ‘plandemic’ still have jobs, and are still “rock stars” to the general public.  Nothing to see here!  Lyme/MSIDS has an even longer history of corruption.
No, I don’t believe anything will come out of this investigation at all.  I pray I’m wrong.
Further, we need to stop raising money for The Cabal who has done absolutely nothing for the plight of Lyme/MSIDS patients except cause more suffering. We need to stop raising money for and working with abusers.

Category:

Activism, Lyme, Ticks

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

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

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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:

Category:

Lyme, Pain Management, research, Treatment, Viruses