Archive for the ‘Lyme’ Category

Success of Prescription & Alternative Medicine Lyme Treatments

https://www.treatlyme.net/guide/antibiotic-alternative-medicines-for-lyme

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Success of Prescription & Alternative Medicine Lyme Treatments

By Dr. Mary Ross

In my Lyme Q&A webinars and my clinical practice at Marty Ross MD Healing Arts, I answer questions about which treatments work best to recover from chronic Lyme.

Which prescription or herbal antibiotics really work for chronic Lyme disease and how long do they take? What about alternative medicine Lyme disease treatments like:

  • Rife machines,
  • stem cell therapy,
  • ozone,
  • hyperbaric oxygen,
  • hyperthermia,
  • supportive oligonucleotide therapy (SOT),
  • low dose immunotherapy (LDI), or
  • IV hydrogen peroxide?

(Go to link for article)

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**Comment**

Dr. Ross states that in the past he would have had to rely solely upon his clinical experience to address the issue of what works in treating Lyme/MSIDS as the NIH stopped funding clinical research on Lyme disease treatments over 15 years ago and only had studies looking at short term antibiotic use of three months or less.

In this article; however, he utilizes not only his clinical experience but that of MyLymeData, a registry of over 12,000 patients who submit information about their experience with treatment.  Learn more or sign up to participate in MyLymeData at lymedisease.org.

In brief:

  • 76% of those that got well used prescription antibiotics but that this took a year or more to accomplish.
  • patients did best when working with an ILADS trained doctor
  • patients found numerous other alternative therapies helpful (see Ross’ article for the breakdown)
  • Dr. Ross states that the results match his clinical experience 
  • Ross also found that hyperthermia benefits lasted only 2-3 months
  • Ross’ review of the science leads him to believe that ozone, hydrogen peroxide and other oxygen therapies do not kill germs due to anti-oxidants in the blood working as killing neutralizers, but that patients often feel better due to helping the mitochondria.  
  • Ross feels stem cell therapy is an expensive disappointment.
  • He finds those using Rife get benefit 35% of the time.
  • He feels CBD from cannabis is not a good germ killer in humans but that it can treat symptoms.
  • He is skeptical of both SOT and LDI.
  • He also lists many other issues Lyme/MSIDS patients experience (please see article)

All in all, a great informative article.  I’m so thankful whenever doctors write about their clinical experience as there is so little out there on what works. The fact that patients and Dr. Ross are stating the same things is also quite helpful and fruitful.  

We may not have NIH funded studies but we have experience on our side.  

For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2020/10/01/new-dapsone-study-breaking-biofilm/

https://madisonarealymesupportgroup.com/2020/06/26/new-treatments-for-lyme-disease-on-the-horizon/

https://madisonarealymesupportgroup.com/2020/10/14/peer-reviewed-study-confirms-what-we-knew-all-along-longer-antibiotic-treatment-duration-is-associated-with-better-treatment-response-for-lyme-disease/

 

 

Category:

Herbs, Lyme, research, Treatment

Study Finds Two Ways to Improve Lyme Testing

https://www.mdpi.com/2079-7737/9/11/366

The Platelet Fraction Is a Novel Reservoir to Detect Lyme Borrelia in Blood

by Victoria P. Sanderson 1, Iain L. Mainprize 1, Lisette Verzijlenberg 1, Cezar M. Khursigara 2 and Melanie K. B. Wills 1,*
*Author to whom correspondence should be addressed.
Biology 2020, 9(11), 366; https://doi.org/10.3390/biology9110366
Received: 16 September 2020 / Revised: 23 October 2020 / Accepted: 27 October 2020 / Published: 29 October 2020
(This article belongs to the Special Issue Advances in the Biology of Leptospira, Borrelia and Other Spirochetes)
Simple Summary
To diagnose Lyme disease, a patient’s blood is tested for antibodies that develop as part of the immune response. This can lead to cases being missed or inadequately treated. An ideal test would directly detect the Lyme disease bacteria, Borrelia, to provide better clinical guidance. In this study, we aimed to improve the methods currently used to find Borrelia in human blood, and identified two opportunities for optimization. We demonstrate that the container most commonly used to collect blood (EDTA) decreases Borrelia’s ability to grow, and we identify a superior alternative (citrate). Additionally, using experimentally infected blood, we show that Borrelia is highly concentrated in the platelet fraction, making it an ideal candidate for direct detection. These results lay the foundation for diagnostic test development, which could improve patient outcomes in Lyme disease.
Abstract
Serological diagnosis of Lyme disease suffers from considerable limitations. Yet, the technique cannot currently be replaced by direct detection methods, such as bacterial culture or molecular analysis, due to their inadequate sensitivity. The low bacterial burden in vasculature and lack of consensus around blood-based isolation of the causative pathogen, Borrelia burgdorferi, are central to this challenge. We therefore addressed methodological optimization of Borrelia recovery from blood, first by analyzing existing protocols, and then by using experimentally infected human blood to identify the processing conditions and fractions that increase Borrelia yield. In this proof-of-concept study, we now report two opportunities to improve recovery and detection of Borrelia from clinical samples. To enhance pathogen viability and cultivability during whole blood collection,
  • citrate anticoagulant is superior to more commonly used EDTA.
  • Despite the widespread reliance on serum and plasma as analytes, we found that the platelet fraction of blood concentrates Borrelia, providing an enriched resource for direct pathogen detection by microscopy, laboratory culture, Western blot, and PCR. The potential for platelets to serve as a reservoir for Borrelia and its diagnostic targets may transform direct clinical detection of this pathogen. View Full-Text

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For more:

The CDC deliberately avoids direct detection methods and has suppressed efforts for a direct test for decades.

Around 2003 the WHO encouraged research into microscopy as a direct test for the Borrelia spirochete, the pathogen causing Lyme disease. When a promising new and simple technique was discovered in 2013, it was however violently attacked. Not on the science itself, which is the normal procedure in science, but personally. Now retired professor microbiology Morten Laane was fired after he gave a lecture at a scientific conference in 2014. Moreover, his laboratory was closed down, the website of the scientific journal was hacked and the article disappeared. An exclusive interview (in link).

Lyme advocate and patient Carl Tuttle continues to ask WHY direct detection methods are not used for tick-borne illness.  The CDC continues to give him the run-around:  https://madisonarealymesupportgroup.com/2020/05/27/letter-to-cdc-dr-beard-why-isnt-direct-detection-of-lyme-disease-a-priority/

Within this link you will learn of a current lawsuit over this issue by Sin Hang Lee, alleging that employees of the Centers of Disease Control and Prevention (CDC) unilaterally terminated a contractual agreement under which the CDC agreed to evaluate a “no false-positive” DNA based Lyme disease test, a currently available test that vastly improves the speed and accuracy of Lyme disease diagnosis for sufferers, and one that is capable of diagnosing all tick-borne borrelial infections.

The CDC’s stranglehold over Lyme testing is also evident with COVID-19 testing.  

I question whether an accurate test for COVID-19 is even possible. It appears it has NOT been singularly isolated and purified and without this important foundation, an accurate test AND vaccine will never be possible:

Category:

Lyme, research, Testing

Managing Risk of Ticks

https://www.lookingatlyme.ca/2020/10/managing-risk-in-the-outdoors-with-steve-smith/

S1 E15: Managing risk in the outdoors, with Steve Smith

EPISODES / BY
looking-at-lyme-s1-e15-v1.0
Listen to Podcast:  https://podcasts.captivate.fm/media/7662b08f-4966-458a-bc65-0d9d7c7413de/15-lal-steve-smith.mp3

In this podcast, Sarah speaks with Steve Smith, an expert in outdoor risk management. Steve has worked for many years teaching, leading, planning, and consulting about ways to manage risk in the outdoors. Steve recently presented at the 2020 NOLS Wilderness Risk Management Conference.

Steve begins by explaining the difference between safety and risk management, and why this distinction is necessary when it comes to taking people into the wilderness. Every day we take risks and some degree of risk is not only unavoidable, it’s a necessary part of being human. Sarah and Steve discuss many of the benefits of how outdoor education and recreation translate to life skills, personal and social growth. Steve speaks about the history of Outward Bound and founder Kurt Hahn who taught about the importance of educating the whole student and encouraging them to explore beyond their comfort zones. It is an important component of developing and managing outdoor education programs, looking at the beneficial risks and identifying and mitigating the undesirable risks.

Sarah raises the topic of duty of care when taking care of young people in the outdoors. Steve points out that a robust risk management program is even more important when working with children. He points out that because Lyme disease is a very serious illness, accurate risk assessment and robust risk management strategies are needed. An important part of these strategies include having a plan in place to respond when events do happen.

Find out more about our forthcoming educator resource!

Steve sees risk management programs in terms of layers which start long before the adventure begins. He describes a risk management model introduced to thim by one of his mentors, Charles Reb Gregg, called “analyze – manage – inform”. This model involves analyzing hazards, managing them and informing people about potential hazards. He touches on the importance of informing participants in advance to avoid legal action. He describes some ways to analyze risk in relation to Lyme disease such as knowing the local tick activity. Managing the risk could include wearing bug repellant, avoiding tick habitats, and doing tick checks. Another important aspect of the strategy is knowing what to do if a participant finds an embedded tick, and knowing the symptoms of Lyme disease. Steve reiterates the importance of informing participants and/or parents about the risks involved.

It’s not about eliminating the risk altogether, it’s about managing that risk.
Steve Smith, Experiential Consulting, LLC

Steve explores some of the legal aspects involved when planning outdoor activities, and refers to a lawsuit relating to tick-borne encephalitis. He talks about the importance of hiring qualified staff, providing adequate and ongoing training, having written policies and procedures, and reporting and learning from incidents when they do occur. He emphasizes the value of reporting and analyzing “near misses” in order to learn from them and prevent similar incidents. Similarly, Steve finds that reflecting back on a trip with those who are running it is a great way to learn and make improvements for future programs.

Emphasizing the overwhelmingly positive aspects of outdoor education, Steve reminds us of how a solid risk management strategy (and corresponding policies and procedures) enable these programs to continue. He urges us to keep learning from our adventures and highly  recommends the NOLS Wilderness Risk Management Conference for those running outdoor programs. Thank you Steve for sharing and helping us manage risk in the outdoors!

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For more:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

https://madisonarealymesupportgroup.com/2019/07/18/frequent-prescribed-fires-can-reduce-risk-of-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2016/05/31/fry-and-die/

https://madisonarealymesupportgroup.com/2019/05/08/upstate-ny-disease-expert-prevention-really-works-do-it/

https://madisonarealymesupportgroup.com/2020/08/11/nootkatone-registered-by-epa-insect-repellent-products-could-be-available-by-2022/

Category:

Lyme, Prevention, Ticks

Tips & Resources for Living in the Present During Challenging Times

https://globallymealliance.org/living-in-the-present-while-worrying-about-the-future/

MyLymeLife_2-38

by Jennifer Crystal

TIPS AND RESOURCES FOR LIVING IN THE PRESENT DURING CHALLENGING TIMES.

As schools resume and cooler weather rolls in, the country is bracing for a possible second wave of COVID-19. The U.S. death toll recently surpassed 200,000, and the last two weeks have seen an increase of cases in many areas. With concerns about what fall and winter will bring, especially as we move into flu season, it can be hard to stay grounded in the present.

Lyme patients know this conundrum all too well. Late-stage tick-borne illnesses end to follow a relapsing pattern: patients have good days and bad days, sometimes good months and bad months. When we’re feeling well, we have a hard time trusting and enjoying that health, because we know the other shoe could drop at any moment. We, too, are always bracing for another wave.

Not only is it hard to stay present when you’re worried about the future, but it can be difficult to enjoy the present when it itself is difficult. The pandemic has people at their wit’s end trying to negotiate working from home with homeschooling, isolating from loved ones, and worrying about illness and finances. In acute phases of Lyme and other tick-borne illnesses, patients also feel at their wit’s end as they deal with crushing fatigue, joint aches, migraines, and neurological symptoms. In both cases, the suffering can be so intense that people wish they could escape to a better time in the past or future.

While escapism has its merits, it’s important that we accept our current situation(s) and find ways to live presently. Why? Because no matter how bleak the present is, it’s all we are guaranteed. Whether we’re healthy or ill, living in a pandemic or not, none of us know what tomorrow will bring. Therefore, we can’t let the present pass us by.

What I’ve learned from living with tick-borne illnesses for over 20 years, from battling long-haul COVID-19, and from sometimes wanting to escape from both, is this: the best way to stay present is to prepare for the future. Our anxieties are valid and have their place. Acknowledging them can help us prepare for the worst, and that can then allow us to live more fully in the present.

What does preparation look like in practice? During COVID-19, we can wear face masks, following social distancing protocols, wash our hands, and create contingency plans for school and work. While these steps don’t guarantee we won’t get COVID-19, they do lower our risk. Contingency plans give us safety nets.

During periods of remission from tick-borne illness, we can stay on maintenance medication or supplements, continue with adjunct therapies, exercise, eat well, follow good sleep hygiene, and try to keep stress levels down. If we’re in remission or even if we have recovered completely, we can continue to Be Tick AWARE™, taking precautions like wearing repellent, doing tick checks, and staying on cleared paths so as not to get re-infected. We can make sure we have a good support system—doctors, caregivers, resources. As with COVID-19 precautions, these steps won’t make us immune to another tick bite or relapse, but they do lower the risk.

Once we’re prepared for the future, we can live more freely in the present. Even in trying times, there are ways to enjoy ourselves, and ways to reduce stress. In my post “What Lyme Patients Can Teach Us About the New Normal”, I outline some ideas for managing school and work this fall. In my post “Adding Joy and Pleasure to Life, No Matter When”, I talk about enjoying small moments and activities while we wait for health, for bigger moments and activities to be possible, for better days. Even in a pandemic, families can create fun rituals like weekly movie or game nights. Even in the throes of illness, Lyme patients can enjoy a friend’s visit, laugh over just five minutes of a silly movie, or give themselves an at-home spa treatment.

And while we enjoy the present, there’s certainly no danger in hoping for a brighter future, even visualizing it. Sometimes just the idea of hope is enough.

One difference between battling Lyme and living through a pandemic is that we are all experiencing the latter together. We have similar fears. We have similar hopes. And we can find ways to enjoy the present, together. As I’ve said before, there is comfort in that solidarity.

Related Posts:

Corona With a Twist of Lyme: Part 4
What Lyme Patients Can Teach Us About the New Normal
Adding Joy and Pleasure to Life, No Matter When
The Idea of Hope

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

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**Comment**

While I’m all about preparing for the future and living in the present, there are numerous inaccuracies in this article that require addressing:

To help alleviate the fear-mongering that is pervasive, the best most productive thing you can do is bolster your immune system. This action will help you no matter what comes down the pike and will give you peace of mind. 

For more:  https://madisonarealymesupportgroup.com/2020/10/13/bartonella-how-to-protect-yourself-from-this-stealthy-intruder/  While this article is about Bartonella, the steps to protect yourself from one invader is true for another.

https://madisonarealymesupportgroup.com/2019/04/04/the-importance-of-gut-health-to-healing-from-chronic-illnesses-podcast-dr-jill-carnahan/

https://madisonarealymesupportgroup.com/2019/01/08/wahls-protocol-impact-of-diet-nutrition-in-ms-other-neurological-diseases/

https://madisonarealymesupportgroup.com/2020/07/13/nutritional-supplements-for-covid-19-prophylaxis-and-symptom-de-escalation/

https://madisonarealymesupportgroup.com/2020/06/15/the-functional-medicine-approach-to-covid-19-virus-specific-nutraceutical-botanical-agents/

https://madisonarealymesupportgroup.com/2020/06/14/potential-interventions-for-novel-coronavirus-in-china-a-systematic-review/

https://madisonarealymesupportgroup.com/2020/08/09/international-panel-of-medical-experts-urges-u-s-government-to-stop-ignoring-intravenous-vitamin-c-as-a-promising-option-to-treat-covid-19/

https://madisonarealymesupportgroup.com/2020/09/14/nebulized-peroxide-covid/

https://madisonarealymesupportgroup.com/2020/06/02/successful-covid-19-critical-care-stonewalled-by-cdc/

https://madisonarealymesupportgroup.com/2020/06/26/math-protocol-shows-profound-impact-on-survival-from-covid-19/

https://madisonarealymesupportgroup.com/2020/09/24/studies-show-proper-levels-of-vitamin-d-slashes-risk-of-covid-as-does-gargling-with-iodine-vaccine-not-needed/

https://madisonarealymesupportgroup.com/2020/09/08/finally-confirmed-vitamin-d-nearly-abolishes-icu-risk-in-covid-19/

As you can see, there is much you can do to make yourself a tough target.  Learn all you can about your own body and potential things you can do to bolster your immune system.  Discuss these options with your doctor and come up with a plan.  This will be a much more effective, long-lasting plan than plopping a mask on.

Category:

Activism, diet and nutrition, Gut Health, Herbs, Lyme, Supplements, Treatment, Viruses

“Gaslighting” By Some Doctors Can Undermine the Chronically Ill

https://www.lymedisease.org/gaslighting-undermine-patients/

“Gaslighting” by some doctors can undermine the chronically ill

Carolyn Dedgnan, LymeDisease.org

By Carolyn Degnan

One of the biggest problems that chronically ill patients face is “gaslighting” from their physicians/practitioners. I’ve been familiar with that term when talking about a personal relationship.

However, I had never heard it applied to a doctor/patient relationship until I heard it used during the LymeMind 2020 conference. I was struck by how appropriate the term is to describe an abusive practitioner relationship.

What is gaslighting?

Gaslighting is a form of emotional abuse that causes someone to question their memory, perception, and sanity. (The expression originated from a play–then movie–called “Gaslight.” The word is now commonly used in the field of clinical psychology.)

Gaslighting in a personal relationship is usually when the abuser is a narcissist. The abuser denies, lies, minimizes, and undermines whatever it takes to plant seeds of doubt and confusion in the victim of his abuse.

When a physician practices gaslighting, the physician makes the patient feel like he/she is imagining their symptoms and then they tell the patient that he/she is depressed and needs anti-depression drugs.

Gaslighting happens to many patients, but it is most likely to happen to females with such conditions as chronic pain, sickle cell anemia, chronic fatigue syndrome, and chronic Lyme disease.

The reality is that the patient is NOT crazy and not all physicians gaslight–but the physician who does gaslight either:

1) doesn’t know how to treat the patient’s symptoms/disease or
2) has been taught by a national medical society to discourage and not treat this “type” of patient.

The only way for a patient to “win” is to walk away from that physician—but that also leaves the patient once again without any treatment and sometimes any hope of getting better. It may be hard for the patient to find another practitioner to work with them, because now the patient has been labelled as “difficult.”

Prevention

How do we help prevent gaslighting for the patient population?

  • Physician education about the disease is key
  • By empowering patients to know their rights to walk away from toxic physician relationships
  • Encourage support groups for every disease
  • Most importantly, promote physicians who are caring and do not gaslight their patients.

LymeDisease.org strives to provide names of qualified Lyme-literate practitioners through our Physician Directory. Many of them are members of ILADS (International Lyme and Associated Disease Society). Others are listed at the recommendation of a patient based on their experience with the practitioner or are listed at the behest of the practitioner.

Information garnered from MyLymeData, our patient-driven research study, shows that most Lyme patients who have improved substantially have been treated by a Lyme-literate practitioner.

Having a Lyme-literate doctor doesn’t guarantee that the patient won’t be gaslighted. But you have a much better chance of having a positive experience if the practitioner is educated on the disease.

Carolyn Degnan is Chief Operating Officer of LymeDisease.org. She recently blogged about “What I Learned From Having COVID-19.” She can be reached at cdegnan@lymedisease.org.

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For more:  https://madisonarealymesupportgroup.com/2017/01/11/sick-shaming-of-lymemsids-patients/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

https://madisonarealymesupportgroup.com/2019/11/29/its-all-in-your-head-medicines-silent-epidemic/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2019/11/22/differentiating-psychosomatic-somatopsychic-multisystem-illnesses-and-medical-uncertainty/

Category:

Lyme, Psychological Aspects