Archive for the ‘Lyme’ Category

“I Went Undiagnosed and Untreated For 15 Years” Says Lyme Patient

https://globallymealliance.org/victorias-story/?utm_campaign=Year-End

THIS BLOG POST IS PART OF OUR PEOPLE TO HIGHLIGHT SERIES DURING OUR 2020 YEAR-END APPEAL. EACH WEEK WE’LL BE SPOTLIGHTING A GLA COMMUNITY MEMBER WHO HAS HELPED TO ADVANCE OUR MISSION. TO SUPPORT GLA DURING OUR YEAR-END APPEAL, DONATE HERE.

by Victoria Kotowski

I am grateful to GLA for speaking up for a community that unfortunately has not been given enough attention.

I went undiagnosed and untreated for 15 years. My initial symptoms started when I was in 5th grade in the fall of 2004. I was likely bitten a second time in 2012. During the next seven years, between then and 2019, I saw over 20 medical professionals, none of who suggested Lyme. In 2019, After months of recurring pain and swelling in my joints (right knee in particular), I finally went to an orthopedist who recommended I get tested for Lyme disease right away. Within a week, I had the results back that I had a positive result for every band tested, including co-infections. My LLMD later explained that my test results made sense to him, given my long list of symptoms and medical history.

Because I went undiagnosed for so long, I have an array of ongoing symptoms. The most prevalent being seizures/fainting, muscle spasms/tremors, joint pain, migraines, extreme fatigue, vision/hearing issues, depersonalization, brain fog, anxiety, blood circulation/body temperature problems, insomnia, depression. I went from being an extremely active, social, fit, and happy person to completely bedridden at times. I had to stop working for a year and quickly went from being a social butterfly to being a hermit. I had to leave college. At one point, I had to move out of my apartment and move in with my parents because living alone was too dangerous due to my seizures and frequent fainting spells.

I first came across GLA when I was diagnosed and desperately searching for answers. They have provided me with an incredible community to lean on for support and turn to for answers. It is also a great resource that I have shared with many who have reached out to me who are confused and scared like I once was. I am grateful to GLA for speaking up for a community that, unfortunately, has not been given enough attention.

I am also a proud Global Lyme Alliance Education Ambassador. I have been sharing my story and tips/education provided to me by GLA virtually on several platforms during the quarantine. In May, I also ran a fundraising campaign, “Lax Out Lyme,” a challenge to raise awareness and funds for GLA. I am happy to give back to an organization that has given me so much.

Today I’ve found that doing a combination of IV antibiotics, IV supplements, holistic treatments (sauna detox, acupuncture, etc.) has been most helpful. I’ve learned that it’s so important to be patient and that healing isn’t linear.

If I could share one piece of advice from my own story, it would be to trust your gut and be your own biggest advocate. I have struggled with symptoms since 2005, but I developed into a very successful student-athlete while having a busy social life. This, coupled with my lack of education/awareness of tick-borne illnesses and no mention of Lyme from any of the numerous doctors I have seen over a fifteen-year period, fueled my self-doubt that anything was wrong with me and led me to continue pushing on.


As you may know, GLA is solely funded by donor support. Due to COVID-19, we have been unable to hold our usual fundraising events. Please donate below if you’d like to support GLA’s research, our programs, and our mission.

Podcast on How Patient Overcame Lyme/MSIDS & Mold

https://www.betterhealthguy.com/episode129

Why You Should Listen

In this episode, you will learn about the BIOTOXIC Rx including the LabElymental Milk Cleanse, NeuroPraxis, MYCOMEFREE, and more.

About My Guest

My guest for this episode is Jody Levy.  Jody Levy is the founder of The LabElymental Milk Cleanse, NeuroPraxis, and soon-to-be MYCOMEFREE.  She is also the co-founder of WTRMLN WTR.

Jody has quietly been suffering from symptoms associated with Lyme Disease, Mold Illness (CIRS), and a slew of co-infections and related imbalances for over 20 years. 

Now she is fully recovered and living her best life. She feels strong, healthy, pain–free, and proud of her discoveries.

She always knew she could not expose her struggle until she was able to share the solutions that helped her get better.  In her unwavering belief that her journey was bigger than herself, she is now committed to creating simple and easy products that people can use to relieve their suffering and thrive.

For years, she was committed to understanding why she was always exhausted, in pain, puffy, blurry, and foggy. No-one could figure out what was wrong with her.  But she was relentlessly determined to understand why she did not feel good.  She set out on a painful and tedious journey to find solutions to help herself, and others, feel happy and healthy. She always knew that if she stayed the course, she would find the tools that would help her and ultimately many other people.  She spun a web of the most exceptional doctors, scientists, researchers, practitioners, and healers who all played their part in her epic recovery.

She tried so many treatments. She mapped her genetics and her entire body.  She was meticulous about how she recorded her treatments.  Protocol by protocol, she tracked and cross-referenced her short-term and long-term results.  She tried things that nearly killed her and when they didn’t work, she would get right back up and try again. Because she knew – intuitively – that she was going to discover things that would help her and others like her return to vibrant health.  During this process she was optimistic, but she was also skeptical of everything. After years of treatments, she questioned if she would ever arrive at an answer.

And she finally succeeded!  She healed herself of Lyme Disease and mold exposure. She got rid of co-infections and the agonizing symptoms of viruses and parasites.  Her mental commitment, psychological anguish, and massive financial investments paid off. She got herself better.  Her test results came back clean. Her brain cleared, her vision got crisp, and her mood balanced.  Today, she is working to bring all of these solutions to as many people as she possibly can, so that no one has to suffer the way she did for as long as she did.

Key Takeaways

  • What was her personal experience through Lyme disease and mold illness?
  • What is the LabElymental Milk Cleanse?
  • What types of milk can be used with the cleanse?
  • What are the components of the cleanse?
  • What are NeuroPraxis and NeuroSculpting?
  • Does NeuroPraxis target the limbic system, vagus nerve, or parasympathetic nervous system?
  • What is MYCOMEFREE?
  • What are other tools that have been helpful in recovering from Lyme disease and mold illness?
  • Is there hope for recovering from complex, biotoxin illnesses?
Connect With My Guest

http://JodyDLevy.com

Related Resources

https://betterhealthguy.link/TheMilkCleanse; code BETTERHEALTH for 10% off
https://betterhealthguy.link/NeuroPraxis

See Transcript of show in top link

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**Comment**

My posting information does not mean I endorse the products mentioned in the Podcast, and in this case I have never even heard of them.  Just throwing it out there for consideration.  I rejoice with each and every patient who manages to find wellness and figure we should all listen and learn from them.

“Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice

https://www.mdpi.com/2079-6382/9/12/868

“Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice

*Author to whom correspondence should be addressed.
Antibiotics 2020, 9(12), 868; https://doi.org/10.3390/antibiotics9120868 (registering DOI)
Received: 7 August 2020 / Revised: 19 November 2020 / Accepted: 3 December 2020 / Published: 4 December 2020
(This article belongs to the Special Issue The Evidence Base for Treatment of Tickborne Infections)
A total of 71 patients with Lyme disease were identified for analysis in whom treatment with disulfiram was initiated between 15 March 2017 and 15 March 2020. Four patients were lost to follow-up, leaving 67 evaluable patients. Our retrospective review found patients to fall into a:
  • “high-dose” group (≥4 mg/kg/day)
  • “low-dose” group (<4 mg/kg/day)
  • 62 of 67 (92.5%) patients treated with disulfiram were able to endorse a net benefit of the treatment with regard to their symptoms.
  • 12 of 33 (36.4%) patients who completed one or two courses of “high-dose” therapy enjoyed an “enduring remission”, defined as remaining clinically well for ≥6 months without further anti-infective treatment.
  • The most common adverse reactions from disulfiram treatment in the high-dose group were fatigue (66.7%), psychiatric symptoms (48.5%), peripheral neuropathy (27.3%), and mild to moderate elevation of liver enzymes (15.2%).
  • We observed that although patients on high dose experienced a higher risk for adverse reactions than those on a low dose, high-dose patients were significantly more likely to achieve enduring remission. View Full-Text

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For more:  https://madisonarealymesupportgroup.com/2020/11/30/patients-can-respond-very-differently-to-disulfiram-be-cautious/

https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

https://madisonarealymesupportgroup.com/2020/05/26/potential-patient-reported-toxicities-with-disulfiram-treatment-in-late-disseminated-lyme-disease/

https://madisonarealymesupportgroup.com/2020/10/01/study-shows-dsm-works-for-lyme-reduces-inflammatory-markers-antibody-titers/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

New Discovery May Explain Treatment-Resistance in Chronic Lyme Disease

https://biologixcenter.com/uncategorized/new-discovery-may-explain-treatment-resistance-in-chronic-lyme-disaease/

Lyme-lab-test-tube

New Discovery May Explain Treatment-Resistance in Chronic Lyme Disease

By

New, more sensitive, and precise testing reveals a troubling finding in the treatment of Lyme disease. As this study reveals, many doctors may often be prescribing the incorrect antibiotics, due to the narrow focus on B. burgdorferi. In twenty-seven people from sixteen states, 96% were found to have other Borrelia strains than B. burgdorferi, many of which cannot be treated with the same antibiotics.

Limitations of Conventional Lyme Testing

Treatment-resistant, chronic and apparent relapsing Lyme disease (borreliosis), with its oft associated co-infections which worsen the illness, though once debated, is now well-documented in the scientific literature. Chronic Lyme disease has reached the true status of a global pandemic, though largely unappreciated by the media and mainstream medicine.

Conventional iagnostic lab testing, such as Western Blot, ELISA, and Conventional Bacteria PCR testing for the dectectin of Borrelia spirochete of Lyme disease has had limited success. Most types of conventional tests having high false-negative results, with as little as 30% sensitivity, meaning as much as 70% of people tested, actually have the infection, but never get treatment due to their lab test coming back negative. These people fall between the cracks of medicine as their body and lives fall apart as doctors do not know what is wrong with them, assuming the tests were correct. (See Fig. 1)

image001-e1600465037956

Fig. 1

The painful reality is that conventional labs which are not focused solely on testing for Lyme disease, often are not as diligent in their testing, not getting paid more to find the bacteria or not, and seeming to forget that there is a real and desperate person at the other end of the blood test. Unfortunately beyond this, the medico-political environment regarding the existence of chronic Lyme disease also gets in the way of getting many, if not most conventional physicians to order the test, even at the pleading of their patients.

New Testing Pinpoints Acute and Chronic Infections

In 2019 a new, highly sensitive test (See Fig. 1 Phage Test) was developed by the University of Leicester, in England, and performed by the R.E.D Laboratory, for the diagnosis of Borrelia infections. This test is so sensitive and the testing process so rigorous, that the test is nearing 100% accurate, at >80% sensitivity to detecting not just the presence of Borrelia burgdorferi, but all of the 20 types of Borrelia that can cause tick-borne and vector-borne illness. This test is call the Phelix Borrelia-Phage Test, and is such a breath of fresh air in that the test results come back not with encrypted, hard to determine bands, as in Lyme Western Blot tests, but instead clearly state, Positive or Negative and the exact type of Borrelia infection or multiple types of Borrelia strains that you have, without needing your doctor to interpret the results. Doctors in the United States or any other country can order this test.

Testing from Many Regions and States in the U.S.

The world is a much smaller place than many appreciate. It is commonly, although mistakenly thought that some of the twenty Borrelia bacteria strains are only in Europe, or only in Asia, or only in certain regions of the U.S. As this study demonstrates, only one person had B. burgdorferi in the group of 27 people in this study.

Armed with the newest and most sensitive Borrelia test, we undertook a retrospective study of 27 people from 16 different states (see Fig. 2) to achieve a wide view of what types of Borrelia infections people actually had in the different parts of the country. The results were unexpected, as the graphs and figures in this article demonstrate. The pre-study expectation was that people with chronic Lyme disease, especially in the U.S., would be infected with Borrelia burgdorferi.

Phelix-test-results-by-state-graph

Fig. 2

Results of 27 People with Positive Borrelia-Phage Tests

As seen in Fig. 3 below, many people had one or multiple strains of Borrelia. The vast majority, 52% (14 people) had Borrelia miyamotoi, followed by 42% (11 people) having Borrelia strains that fall under the category of Relapsing Fever group. Relapsing Fever group is illness from one or more of the following strains of Borrelia, B. hermsii, B. recurrentis, B. crocidurae, B. duttonii. After the Relapsing Fever group, 19% (5 people) had Borrelia hermsii, and only one person in the group had B. burgdorferi.

Phelix-test-results-graph

Fig. 3

Conclusion

The implications of this review are that Borrelia burgdorferi is likely not the primary culprit in many cases of chronic Lyme disease in the United States, as was previously thought. The other huge takeaway from this study is that many if not most people are not receiving the correct treatment, since the antibiotics typically used for B. burgdorferi are not the same as those used for other strains of Borrelia.

The specific strain of Borrelia bacteria cannot reliably be determined using bands on a Western Blot test. Any lab test that is focusing only upon B. burgdorferi, will miss the true diagnosis of other strains of Borrelia.

The Phelix Borrelia-Phage test is just one of a new breed of phage-based lab tests that will likely become the gold-standard of all bacterial testing. It would be advisable for anyone who suspects that they have or had Lyme disease, yet have either been told they are negative, or who have lingering symptoms to be tested again with the Phelix test.

Our view of what symptoms are typical of classic Lyme disease, based upon the B. burgdorferi model, needs to be expanded to include the symptoms that are unique to the other strains of Borrelia, as their presentation can be quite different, as well as their vectors not being always a tick.

Phage-based Testing and Now Phage-based, Strain-Specific Treatment

Treatments for B. burgdorferi, should be expanded to include the actual type or multiple types of Borrelia actually infecting a person. Although antibiotics, which can be likened to carpet-bombing, killing many bad bacteria, the Borrelia always causes the bad bacteria to mutate. This means the all types of bacteria lose some of their aspects that make it vulnerable to the antibiotics, not to mention the fact that antibiotics are notorious damaging to irreparably upset the populations of the friendly flora (microbiome) of the body, and cause prolonged and severe suffering through Jarische-Herxheimer reactions (Herx). A new Borrelia-phage-based targeted treatment has been developed that has been documented by repeated Phelix Borrelia-Phage testing, to rapidly eliminate only the types of Borrelia a person has been found positive, with no harm to the body, with minimal Herx reactions, and no harm to good bacteria.

Ruling out False-Positives and False-Negatives with Phelix Borrelia-Phage Testing

The Phelix Borrelia-Phage test is the premier, newest, most sensitive Borrelia lab test available. The Phelix test is statistically the most accurate test, as each blood sample undergoes quadruplicate real-time PCR tests for 3 different targets (B. burgdorferi sl, B. miyamotoi, Relapsing fever) for a total of 12 assessments. All positive-like samples are submitted to confirmatory sequencing to rule out false positive results. Before the Phage real-time PCRs, each sample is submitted to 2 rounds of QC to rule out false-negative results that would relate to the technical flaws: (i) to assess the quality of extracted DNA by performing low cycles actin PCR, and (ii) to assess the absence of PCR inhibitors by doing a real-time PCR for IAC (internal amplification control).

Ongoing Development of INPT at the Biologix Center

INPT was developed by Phagen Corp. and is being used at the Biologix Center for Optimum Health, as a part of an IRB study, to go beyond Borrelia and target any microbial issue, including all of the co-infections associated with Lyme disease, as well as Candida sp., mold, and parasite infections, however at this time the only lab test for detecting bacteria-specific phages is for Borrelia strains.

The future of INPT includes intravenous and injectable forms of application, in addition to the oral medication, through doctors only. INPT is not projected to be sold directly to the public at this time.

To Get Treatment:

If you would like to participate in our one to two week INPT programs please contact us at www.biologixcenter.com/get-treatment/. Financial assistance is available for those with chronic illness of any type, who desire treatment at Biologix Center and are struggling financially.

A more detailed report of these findings are presently being edited for publication in peer-reviewed article submission.

Bartonella Research Collaboration

The Biologix Center is collaborating with researchers who are working to develop phage lab tests for Bartonella and other types of microbes. The Phelix Bartonella-Phage Test is hoped to be offered before the end of 2020. If you have been diagnosed with Bartonella and would like to contribute a blood sample for the development of this new test, please let us know. Offer available only to patients of the Biologix Center who have been pre-qualified by our testing.

To learn more about Bacteriophages and INPT please click on the hyperlink.

*INPT is a patent-pending innovation developed by Phagen Corp, and is being researched at the Biologix Center for Optimum Health, in Franklin, Tennessee. A patient-funded, Retrospective Registry IRB is in place to publish peer-reviewed articles as this clinical work progresses. Approximately 98% of funds go to support the ongoing research.

There are no financial or academic conflicts to be reported between Biologix Center for Optimum Health and RED Laboratories.

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For more:  https://madisonarealymesupportgroup.com/2020/11/30/neglected-infections-gastrointestinal-issues-in-patients-with-late-vector-borne-infections/  The Borrelia-phage test is discussed within this link as well as the research showing:

  • Among positive ticks, 60% were for B. miyamotoi.
  • Testing on over 2,000 humans (mainly late stage/chronic patients) showed 30% negative results and 70% positive, among which over 60% indicated the presence of specific Borrelia miyamotoi phages.
It appears Borrelia Miyamotoi is far more prevalent than thought, and is yet another example of something our public ‘authorities’ have labeled ‘rare’ that isn’t.

 

Educators’ Tick & Lyme Disease Resource

https://www.lookingatlyme.ca/resource/

CANLYME INITIATIVE

Educators’ resource

CanLyme is excited to announce the launch of our resource for educators who teach in the outdoor classroom. Whether you are new to outdoor education or a seasoned wilderness guide, this teaching resource provides information through engaging learning experiences. Students can learn how to identify ticks and tick habitats so that they can avoid tick bites and recognize signs and symptoms of Lyme disease.

Virtual focus groups – call for educators

Download the Educator Resource and accompanying slidedeck…we would love to get your feedback! 

We are seeking educators who are willing to pilot and provide feedback through two virtual focus groups. This feedback will be incorporated into the second draft that is scheduled for release in winter 2021. We are offering a stipend to educators who participate in both virtual focus groups. 

Please email canlymeeducation@gmail.com if you are interested able to commit to participating in the two focus groups in January and February. Email us for more details.

Lyme Education Awareness and Prevention (LEAP). Educator’s resource:

https://www.lookingatlyme.ca/wp-content/uploads/2020/11/CanLyme-Educators-Resource-2020.pdf

Downloadable Slide deck Zip File: Leap-Master-Slide-Deck-2020

For more information:  https://canlyme.com