Archive for the ‘Lyme’ Category

‘I Feel Incredibly Robbed’: The Debate and Deadly Effects of Lyme Disease in Colorado

https://www.rmpbs.org/blogs/rocky-mountain-pbs/lyme-disease-colorado-ticks/  Video Here (Approx. 7 Min)

‘I feel incredibly robbed’: The debate and deadly effects of Lyme disease in Colorado

by  Alexis Kikoen
Published on
Samantha Davis and her 3-year-old son Felix look through pictures of her husband, Nate, after he lost his life to complications from Lyme disease and mold poisoning.

Rocky Mountain PBS

DENVER — Samantha Davis and her 3-year-old son Felix sit together at their kitchen table. A large pile of photographs sits in front of them, and they slowly start to make their way through it.

“Oh my gosh, what are we doing?” Davis asks Felix as she shows him a picture. “Rafting with Papa!” he excitedly responds.

Davis continues to flip through the stack and lands on a picture of her husband wandering through a canyon in Moab, Utah. Her expression becomes somber.

“Here’s Papa in Moab, probably the year he got bit,” she sighs. “We had no idea what the early symptoms of Lyme disease were, or what untreated Lyme could do to you.”

Davis lost her husband Nate Watters on June 5, 2021, to complications from Lyme disease and mold poisoning. He was 36 years old. (See link for article)

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SUMMARY:

  • The article predictably asks the question if Lyme even exists in Colorado.  The problem with this illogical and ignorant question is it doesn’t take into account the fact that travel.  The fox, deer, bird, and people travel everywhere picking up ticks and dropping them everywhere.  I can’t believe we are still having this discussion.
  • A singular thinking doctor in Colorado (Dr. Shawn Naylor) points out that there are numerous strains of borrelia that cause Lyme-like disease, and while they may not be picking up Borrelia burgdorferi, it doesn’t mean that there aren’t other strains causing illness, and absence of evidence is not proof of absence.  Borrelia is a fastidious organism and extremely hard to find. The “discoverer” of Lyme, Willy Burgdorfer stated so in this important 4 min video.
  • The fact this man had a EM rash (which is diagnostic for Lyme) and didn’t get diagnosed and treated is a clear reminder that Lymeland remains in the Dark Ages.  When is the medical profession going to take this seriously enough to train doctors appropriately?  Simply put: this man did not have to die.
  • IMO the hands/skin pain and rawness is an indicator that should point doctors to another strain – a European strain that causes skin manifestations (not something I see much of here in WI but still exists).   This picture is from a year old study and even shows the hand involvement.       

  • Then the barrel of monkey symptoms came tumbling out: (weight loss, facial swelling, body lesions, fatigue, graying hair, muscle pain, etc) should have sent off red-light warning bells. But, the medical system stupidity continues.
  • The guy even manages to test positive for Lyme.  But again, due to flagrant stupidity, doctors regurgitate the mantra that it must be a false positive because Lyme isn’t common in Colorado, and Lyme “doesn’t look like this.”  Wow.
  • The ignorance is blatantly pointed out by an entomologist and Lepidopterist manager that states the black legged tick does not naturally occur in Colorado, therefore Lyme disease transmission is rare to non-existent.  As the saying goes however; gargage in, garbage out.

    • First, ticks carry all sorts of nasty diseases they can transmit and they can all look somewhat similar. Second, testing for ALL of these pathogens is abysmal, which means it’s not getting picked up which explains why things are often “rare” when they are not. Third, even IF patients are picking Lyme up from nearby states, what does it matter?  You have sick people and they need to be diagnosed and treated.  It’s ironic to me that globalization is embraced for everything until it comes to tick-borne illness.  Then, for some illogical but nefarious reason, it’s all about geography and limitations (where ticks are and where they aren’t – where things are rare, and where they aren’t) when people and animals move about freely. Fourth, it’s unacceptable that we are still in this quandary and that doctors are still taking this tact when it’s been proven there are numerous genospecies that cause illness in animals and humans, including:
      • a peer-reviewed research paper published in The Journal of Infectious Diseases in September 1994, a new genospecies of Borrelia burgdorferi was discovered in wood rats and ticks found in Northern Colorado.
      • A second paper published in the Journal of Clinical Microbiology in August 2000 gave the new Borrelia isolate a name – Borrelia bissettii. The strain has been identified in at least three different tick species in Colorado and has been isolated in humans displaying clinical symptoms typically associated with Lyme disease. According to the study, “It is therefore possible that some cases of Lyme disease in the United States may be caused by B. bissettii.”  
  • The fact Naylor, the singular thinking doctor, has to “speak carefully” on the subject demonstrates perfectly that Lyme/MSIDS has become highly politicized (like COVID) and politics trump science.  Naylor points out that the deceased man ran into denial from doctors despite testing positive multiple times on the western blot. He states doctors want to err on the side of ignorance than acknowledge that this is severely under-studied. Doctors also know that if they defy the accepted narrative, they will be hunted down and persecuted (just like we are seeing with doctors treating COVID). The persecution of doctors is extremely taxing, stressful, time consuming, and full of risk.  It takes strong, determined doctors to defy this tyranny, which is why we desperately need to decentralize the public health monopoly.
  • Doctors are getting their orders from the top-down, which starts in the government and then trickles down to research institutions, medical schools/professional organizations, and hospitals/clinics.  There are vast conflicts of interest in this pyramid scheme.
  • The Centers for Disease Control and Prevention reports that up to 90% of tick-borne disease cases go unreported nationwide.  Hello!
  • Naylor then points out that states that are not considered to be “endemic” have much more complex and arduous reporting requirements, which turns into a self-fulfilling prophecy keeping these states forever non-endemic, even when they aren’t.
  • And this is how the CDC controls the narrative. They are in charge of parameters be it with reporting, testing, diagnostics, treatment guidelines, you name it.  Until this corrupt organization is shut down we will never have truth.

Category:

Activism, Lyme, Mold, Ticks

Lyme Disease Biobank Collects Patient Samples For Research

**Comment**

Both, the Lyme Bio Bank (Bay Area Lyme Foundation) and the Columbia Specimen Bank are listed on this website.  They are on the right hand side of the website and they are both listed under “Lyme Resources.”  May sure you plan ahead if you have blood/specimens you want to donate as paperwork and steps that require some time need to be taken.

https://www.lymedisease.org/lyme-disease-biobank-san-rafael/

Lyme Disease Biobank collects patient samples for research

Aug. 18, 2022

Lyme disease biobank

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.” –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.” – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, California. Persistent/chronic Lyme patients traveled from as far away as Sacramento, California, and Reno, Nevada, to donate blood and urine samples to the Biobank.

Gordon Medical Associates staff with Liz Horn, PhD, MBI (far right), Principal Investigator, Lyme Disease Biobank, with patient samples ready to be shipped to the Biobank

LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Over 1000 specimens

Since its inception in 2014, LDB has collected over 1,000 patient samples for the Biobank, and it supports more than 70 projects around the United States. The program collects blood and urine from people who have been diagnosed with acute or persistent/chronic Lyme disease.

Led by Principal Investigator Liz Horn, PhD, MBI, the Lyme Disease Biobank has partnered with Gordon Medical Associates since 2019 to collect samples from patients with persistent/chronic Lyme.

In 2018, the LDB launched its tissue collection program. Lyme patients who have upcoming surgeries may elect to have tissue that would otherwise be discarded collected and stored in the Biobank.

This program is administered by the National Disease Research Interchange which also manages post-mortem donations to the Biobank.

Partnering with MyLymeData

Our partner, MyLymeData, helps generate awareness about the tissue collection program and provides additional information about the tissue samples to researchers using the samples.

“As a doctor who treats Lyme patients, I feel it’s my duty to support finding better diagnostics and treatments for Lyme patients. Lyme is an underfunded and under-researched aspect of chronic illness, and we need all the help we can get.” – Natalie P., ND, LDB participant

“We are extremely grateful to everyone who has donated samples to the Biobank so far. Patients are the key to finding answers to the challenges of Lyme disease—we could not have made such important research gains without your commitment to the cause. We humbly thank you for your participation!” – Linda Giampa, Executive Director, Bay Area Lyme Foundation

Sarah R., LDB participant

Click here to read more about Lyme Disease Biobank.

Participate in future sample collections in San Rafael.

“I hope my participation in the Biobank will lead to a greater understanding of persistent/chronic Lyme disease and that better diagnostics and treatments will be developed from this program. One doctor told me that Lyme was a ‘hippie doctor disease.’ It’s not. Lyme is a true epidemic that must be addressed. Upon walking out into the parking lot, I found I was emotional: I felt like I was going to burst into tears. Someone was listening! I felt I had been heard with compassion and empathy. Thank you!” – Sarah R., LDB participant

SOURCE: Bay Area Lyme Foundation

Related posts:
  1. Donate samples to Lyme Disease Biobank to aid research
  2. Learn about the Lyme Disease Biobank’s tissue collection program
  3. Lyme Disease BioBank Adds Lyme Disease Tissue Collection Program
  4. Lyme biobank provides crucial service to researchers pursuing a cure

Category:

Lyme, research

FDA At it Again By Threatening MS Treatment

As most of you are aware, MS can be undiagnosed Lyme, and/or other infections.

https://anh-usa.org/fda-threatens-multiple-sclerosis-treatment/

FDA Threatens Multiple Sclerosis Treatment

 By ANH-USAOn 0
FDA Threatens Multiple Sclerosis Treatment

Clinical trials testing estriol for the treatment of multiple sclerosis show great promise…but the FDA is threatening to ban the only way patients can access this critical medicine. Action Alert!

Estriol is one of three main estrogens produced by the body, alongside estrone and estradiol. It is often used by integrative practitioners for its benefits to menopausal women, but recent investigations show that it may be effective in the treatment of multiple sclerosis (MS). Despite these health benefits, the FDA is poised to eliminate access to estriol and other bioidentical hormones made at compounding pharmacies. We cannot let this happen.

Estriol levels skyrocket during pregnancy, and many MS patients go into remission during pregnancy. Researchers have noted estriol’s anti-inflammatory and neuroprotective properties. This has culminated in clinical trials testing estriol as a treatment for MS, and the lead researcher on this trial recently said that so far, results have been “promising.”

Many studies have shown that estriol offers many other potential health benefits—for urinary tract and bone health, for example—without some of the dangers that accompany higher-potency estrogens, such as cancer.

Unfortunately, such a breakthrough may become moot if the FDA goes through with a ban on estriol and other compounded bioidentical hormones. Currently there are no FDA-approved estriol products; the only way patients can get estriol is through a compounding pharmacy.

Recall that the FDA is currently in the process of determining whether to ban estriol and other hormones from being made at compounding pharmacies. After ANH and other stakeholders mounted a massive grassroots campaign pushing back against this threat, the FDA asked the National Academies of Sciences, Engineering, and Medicine (NASEM) to evaluate the “clinical utility” of treating patients with compounded bioidentical hormones like estriol. We explained previously how NASEM’s process was heavily influenced by the FDA and outrageously biased against compounded hormones. In its final report, NASEM concluded, unsurprisingly, that widespread use of compounded hormones poses a “public health concern.”

This has no factual basis at all.  A review of the clinical literature concluded that bioidentical hormones are associated with lower risks, including the risk of breast cancer and cardiovascular disease, and are more effective than synthetic or animal-derived hormones. What seems to be underway is an attempt to create drug company monopolies. The result may be that women may not be able to obtain estriol at all, even though estriol protects against cancer.

The FDA still has hurdles to overcome before a ban can be issued: the agency has to issue a proposed rulemaking to add these hormones to the Difficult to Compound List. It’s also possible that the FDA could issue a draft guidance that restricts the use of cBHRT as outlined by NASEM’s recommendations.

The time to send a clear message to Congress and the FDA is now. We beat the FDA when they tried to ban estriol in 2008, and we can beat them again, but only if the entire community rises up and holds the agency’s feet to the fire. We cannot let the federal government interfere with our health.

Action Alert! Write to Congress and the FDA urging continued access to estriol and other important compounded bioidentical hormones. Please send your message immediately.

Go to top link to send a message to your representatives.

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**Comment**

The FDA is at it again.  Doing everything but what it should.

The FDA has a long and sordid history of colluding with Big Pharma by attempting to monopolize medicine by erasing anything it considers competition or a threat to its power:

Category:

Activism, Lyme, Viruses

Lyme Disease & The Effects of Vitamin D

https://www.globallymealliance.org/blog/lyme-and-vitamin-d

Lyme Disease and The Effects of Vitamin D

by Jennifer Crystal on August 16, 2022

<img src="https://www.globallymealliance.org/hubfs/Gala%20PR%20Image%20%2829%29.jpg&quot; alt="Lyme Disease and The Effects of Vitamin D“>
Lyme disease can deplete your vitamin D levels–which ironically, are essential in your recovery. Read about the positive effects of Vitamin D and techniques to increase it.

While kayaking recently, a friend noticed that I was getting a lot of sun on my face and asked if I wanted a hat. “No thanks,” I replied. “I’m wearing sunscreen, and I want to soak up as much vitamin D as I can.”

There were summers during my convalescence from tick-borne illness when I couldn’t be in the sun at all, due to the phototoxicity of the medication I was on. Doxycycline, the most common antibiotic used to treat Lyme disease, can cause you to be very sensitive to the sun. When I was on doxycycline or other antibiotics in the same family, my face would feel like it was on fire if I was exposed for more than five minutes. I spent summers bundled in protective shirts, under hats and umbrellas in the shade.

A former camp counselor who spent every day in the sun before I got sick, summers in the shade were not my style. Now that I am in remission, I want to (carefully) get as much sun as possible, making up for lost time and summer glow. But it’s not just sun-kissed cheeks that I’m after. I literally am trying to soak up vitamin D, provided by the sun, because I know that Lyme disease can cause a deficiency in that vitamin.

The Lyme disease bacteria, Borrelia burgdorferi, directly reduces vitamin D receptor expression in immune cells. Low vitamin D can be involved in immune dysfunction and autoimmunity, so Lyme patients who are already struggling with compromised immune systems may be further compromised by a vitamin deficiency. As Clinical Nutritionist Lindsay Christensen, MS, CNS, LDN, CKNS explains in her blog post “Lyme Disease Nutrition Tips for Optimal Immune Function,” Vitamin D3 is “essential for healthy immune function. Within the innate immune system, vitamin D3 supports the production of cathelicidin, an antimicrobial peptide (protein) that protects the body against bacteria, viruses, and fungi. Vitamin D3 also regulates dendritic cells, which are immune cells that ‘bridge the gap’ between the innate and adaptive immune system branches and may help defend the body against Borrelia.”

In other words, the very vitamin that can be depleted by Lyme disease is also necessary to help fight it.

So what should Lyme patients do? First, make sure your doctor is monitoring your vitamin D levels. A blood test can tell you whether you have a deficiency. If you do, sunshine, and certain foods like egg yolks and fatty cold-water fish, can help you get vitamin D. You also may need to supplement with vitamin D3 to maintain what Christensen describes as “an optimal vitamin D3 level of 40-60 ng/mL, which is higher than the 30-60 ng/mL range suggested by most labs.”

Testing vitamin D levels can also help a Lyme Literate Medical Doctor (LLMD) determine if you have Lyme disease, if you have symptoms but have not yet been diagnosed. Though not a definitive diagnostic marker (low vitamin D is also seen in other conditions like multiple sclerosis), low vitamin D can be a tip-off that Lyme disease could be the cause of your symptoms.

Vitamin D is not the only vitamin that can be affected by Lyme disease, or that you may need more of to help fight tick-borne illness. Many Lyme patients have a vitamin B12 deficiency. Others have anemia or low ferretin. It’s important that your doctor do regular blood work to check for any nutritional deficiencies, and then you can determine together how to best supplement them, to support your overall healing. In the meanwhile, as long as you’re not on a phototoxic drug, sticking your face in the sun can’t hurt!

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. *Make sure to protect your skin when in the sun.
Writer

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**

This is a perfect example of Lyme/MSIDS patients needing to be their own advocates and learning about their own bodies and what they require for optimal health.  It’s a road that never ends so buckle up and enjoy it.

There are times in the journey when this revelation can be overwhelming.  Accept it for the time being and don’t allow it to bog you down.  When you are capable of reading, comprehending, remembering, and searching yourself – do it – you won’t regret learning and improving.  There are many stages to the journey.  You can’t learn it all at once – your head would explode.  So, bit by bit, piece by piece – accrue your knowledge and use it for yourself and to help others.  This is, BTW, the best way to learn.

For more on vitamin D:

Category:

Lyme, Supplements

Lyme Testing, Blood work, and Diagnoses

https://www.globallymealliance.org/blog/lymewarrior

Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Blood work.

by Jennifer Crystal on August 12, 2022

<img src="https://www.globallymealliance.org/hubfs/blog_Lyme-Warrior-Q-A_Jennifer-Crystal_3-Apr-27-2021-09-10-21-42-PM%20%282%29.webp&quot; alt="Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Bloodwork.“>
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.
How were you finally diagnosed with Lyme disease?

People ask me this question all the time, especially when their own lab work comes back negative or equivocal, but they have symptoms of Lyme disease or remember a tick bite. Here’s an important fact that not everyone—including some doctors—knows: per the CDC, Lyme disease is a clinical diagnosis. That means that it is up to your doctor to determine, based on your symptoms and on factors such as whether you had a tick bite or whether you spent time in an area where Lyme is common, whether you have Lyme disease or not. That clinical diagnosis can be supported by lab tests, but tests alone cannot definitively say whether you do or don’t have Lyme disease.

That last part bears repeating: tests alone cannot definitively say whether you do or don’t have Lyme disease. This is because Lyme tests only look for antibodies against the bacteria that causes Lyme disease, not for the bacteria itself. Testing for Lyme disease is faulty for a number of reasons, including the fact that standard CDC tests only looks for a very narrow set of bands of antibodies—so narrow, in fact, that those tests were not actually designed for diagnostic purposes, even though they are used as such. You can use other labs that look for a wider range of bands (for more information, see GLA’s Lyme Disease Testing page), which can give your doctor a better read than standard tests. At the end of the day, though, the diagnosis is still up to your doctor.

I was clinically diagnosed by a Lyme Literate Medical Doctor (LLMD), and I was lucky enough to also have a CDC-positive lab test. I also tested positive for the co-infections babesiosis and ehrlichiosis, and my doctor suspects that I also had Bartonella. If you had a standard Lyme test come back negative but have reason to believe you do in fact have Lyme disease, see a LLMD. They will make a clinical assessment, likely do the more specialized tests, and probably do tests of certain biomarkers that may help them figure out if you have Lyme disease.

Can tests show that your Lyme disease is gone or in remission?

Unfortunately, no. If you’ve had Lyme disease, your long-term antibodies (IgG) will likely continue to show up whether your infection is active or not. Antibodies of acute Lyme infection (IgM) could mean your old infection is still active, or they could mean you have a new infection. As a result, most doctors do not use tests to determine whether your Lyme infection is cleared or dormant; they go by clinical symptoms. Other biomarker tests, like inflammatory markers and immune markers, can help them determine how active your infection is, but currently there is no direct test to determine where your Lyme infection stands.

Is it important to get other blood work done while you’re being treated for tick-borne illness?

Absolutely. Even though tests can’t reliably tell you whether you have Lyme disease or how active the infection is, it’s really important that your doctor does regular blood work ups to determine how your tick-borne infections, and your treatment for them, are impacting your body. You may get depleted of certain nutrients, your inflammatory markers could be high, or you might show anemia. I get a complete blood count (CBC) and comprehensive metabolic panel (CMP) every two months; when I was acutely ill and on intravenous antibiotics, I had my blood drawn every week. My doctor also does specific tests for markers that have been off for me in the past (for example, my ferritin levels were recently low, so I needed to take an iron supplement for a little while).

It’s also important to check for other health issues that may be going on in addition to tick-borne illness. When we’re in the midst of battle with these illnesses, it can be easy to forget the bigger picture, but you need to keep up with other regular health exams, too. A few years ago, I had a mammogram that showed a lump that required surgery. Thankfully, everything was benign, but if I’d skipped the mammogram to focus only on tick-borne illness, I might not have caught the lump in time. Make sure to keep up not just with regular blood work but also with annual health appointments, like the eye doctor and the dentist, as well.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. 
Writer

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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For more:

Category:

Lyme, Testing, Uncategorized