Archive for June, 2019

GLA: 1st Peer to Peer Mentor Program to Offer Much Needed Support For the Growing Number of People Suffering From Lyme and Other Tick-Borne Illnesses

https://globallymealliance.org/press-releases/new-peer-to-peer-mentor-program-announced-to-support-lyme-disease-patients-and-caregivers/?

GLOBAL LYME ALLIANCE LAUNCHES FIRST-EVER PEER-TO-PEER MENTOR PROGRAM TO OFFER MUCH NEEDED SUPPORT FOR THE GROWING NUMBER OF PEOPLE SUFFERING FROM LYME DISEASE AND OTHER TICK-BORNE ILLNESSES

STAMFORD, CONN (June 19, 2019)— Global Lyme Alliance (GLA) today announced the launch of “Lyme Link,” its new—and the Lyme disease community’s first—peer-to-peer mentor program. Lyme Link is a free resource that matches those affected by Lyme and other tick-borne diseases with volunteers who provide emotional support and hope.

Our new program,” said Sara Tyghter, GLA’s Director of Education and Outreach, “will connect Lyme patients, caregivers or family members with knowledgeable and empathetic individuals who have already experienced the many challenges of living with Lyme, and who can provide effective support.”

Tyghter added, “Connecting to others like themselves allows for those affected to share their emotions—fear, stress, confusion, frustrations, guilt—while helping patients find new ways to lighten their load.”

Peer support is different from other forms of social support. In it an individual is connected to a specific individual who has knowledge from their own experiences with tick-borne illnesses. Studies show that peer support is effective for patients suffering from a variety of diseases including cancer, brain injury, multiple sclerosis and numerous other health conditions. According to a study published in the Annals of Internal Medicine on the effects of peer mentoring on diabetes patients, those with peer mentors showed significant improvements in blood sugar control after six months. Lyme patients will particularly benefit from mentoring due to the often isolating and misunderstood nature of the disease.

Those who want to become a GLA mentor or mentee need to complete an online matching survey at GLA.org/peer-peer-mentor-program. A GLA peer mentee is paired with a mentor who has faced similar challenges themselves. The individual is then matched with a person with a similar profile, including age, gender, stage of the disease, how long it took to get diagnosed, and experiences with treatments. Peer mentors are available to communicate by phone, email or video chat.

“We are thrilled about this new program because it reflects GLA’s ongoing commitment to improving the lives of all those affected by Lyme disease,” said Scott Santarella, GLA’s CEO. “This program will make sure that any individual affected by Lyme or other tick-borne diseases is supported through their often difficult Lyme journey.”

GLA’s new peer program is one of the organization’s many initiatives to provide support to those impacted by Lyme and other tick-borne diseases. GLA’s Physician Network, for example, has helped thousands to access Lyme specialists worldwide. Moreover, GLA volunteers answer questions from patients around the globe and provide information about those physicians in a patient’s geographic area knowledgeable about Lyme and other tick-borne diseases. GLA also offers access to support groups; this is a great opportunity for patients, family members and caregivers to talk and meet with others who share their experiences.

“Each person experiences Lyme in a singular way,” said Santarella. “That makes it essential for us to help patients in any way we can to improve their quality of life.”

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About Global Lyme Alliance
Global Lyme Alliance is the leading 501(c)(3) organization dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness. GLA has gained national prominence for funding some of the most urgent and promising research in the field, while expanding education and awareness programs for the general public and physicians. We support those around the globe in need of information about tick-borne diseases. Learn more at GLA.org.

Category:

Activism, Lyme, Psychological Aspects

A Creepy Bed-Time Story from Stephen King

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Please know ticks have been found in the strangest places:  https://madisonarealymesupportgroup.com/2018/06/07/ticks-on-beaches/

 

 

 

 

Category:

Activism, Lyme

Morgellons & Lyme Disease Connection – Joe Rogan: “Lyme Disease is Terrifying”

**Warning – explicit language in each video**

 Scroll to 2:21

Joe Rogan on the Morgellons & Lyme Disease Connection

“Everyone who has Morgellons also has Lyme disease.”

Rogan explains how a tick is full of pathogens – Lyme is only one of many.

There’s discussion on Bells Palsy and some doctors state to just wait until it goes away.  I would caution this approach as this is often a Lyme disease symptom. While symptoms wax and wane with Lyme disease, just because the symptom disappears does not mean you are not still infected systemically. Waxing and waning symptoms is hallmark of Lyme disease. You need to see a Lyme literate doctor who understands these things. (Contact your local support group to find these specially trained doctors) In this article, Dr. Cameron warns against using steroids for facial palsy due to this practice causing refractory disease in Lyme/MSIDS patients:  http://danielcameronmd.com/steroid-use-can-lead-long-term-treatment-failure-lyme-disease-patients/

 Approx. 10 Min.

Taken from Joe Rogan Experience #1234 w/David Sinclair

Joe Rogan: “Lyme disease is terrifying”

Approx. 15 Min.

Joe Rogan Experience podcast #873 with Steven Kotler

Around 5:00 he talks about Morgellons as well.

For More on Morgellons:  https://madisonarealymesupportgroup.com/2019/05/19/skin-deep-the-battle-over-morgellons/

https://madisonarealymesupportgroup.com/2018/11/16/study-strengthens-association-between-tickborne-infections-morgellons-disease/

https://madisonarealymesupportgroup.com/2018/03/05/morgellons-not-a-delusion-states-new-study/

https://madisonarealymesupportgroup.com/2016/12/10/morgellons-in-dogs/

https://madisonarealymesupportgroup.com/2019/05/29/mixed-borrelia-burgdorferi-helicobacter-pylori-biofilms-in-morgellons-disease-dermatological-specimens/

https://madisonarealymesupportgroup.com/2018/02/08/february-morgellons-awareness-month/

Category:

Activism, Lyme, Ticks, Transmission

Retinal Vessel Occlusion Caused by Bartonella Infection

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6236082/

. 2018 Nov 19; 33(47): e297.
Published online 2018 Oct 29. doi: 10.3346/jkms.2018.33.e297
PMCID: PMC6236082
PMID: 31044568

A Case of Retinal Vessel Occlusion Caused by Bartonella Infection

Minji Woo,1 Somin Ahn,1 Joon Young Song,2 and Seong-Woo Kimcorresponding author1
Author information Article notes Copyright and License information Disclaimer
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A 29-year-old female visited the emergency room with sudden visual loss in the right eye started on the same day. She had been suffering from fever for two days. A best-corrected visual acuity (BCVA) was 0.5/0.7 in the Snellen chart. Fundus examination (Fig. 1) showed multiple retinal hemorrhages. Severe vascular sheaths around the optic disc area were present in the right eye. Candle-wax-dripping sign in the superior hemisphere were found in the left eye.

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On systemic examination, erythema of the lower extremities (Fig. 1C) and right inguinal lymph node enlargement were discovered. With systemic doxycycline (100 mg) and gentamicin (90 mg) administration, fever subsided after three days. Bartonella infection was confirmed after 10 days with in-house indirect immunofluorescent assay (IFA) analysis (immunoglobulin G; cutoff points for seropositive titer at 1:64). Lymph node biopsy showed necrotizing granulomatous lymphadenitis (Fig. 1D). On the same day, the BCVA decreased to hand motion in the right eye. When asked, she could not specify when the vision loss began. The candle-wax-dripping sign in the left eye had progressed to vascular sheath with flame-shaped hemorrhages. Fluorescein angiography shows a rack of filling of the retinal arteries. Blocked fluorescence by retinal hemorrhage was found in the whole area of right eye and in the superotemporal quadrant of left eye. Inner-retinal hyper-reflectivity of the right eye and cystoid macular edema in the left eye were revealed (Fig. 2). The impression was central retinal artery and vein occlusion for the right eye and branch retinal artery and vein occlusion for the left eye, associated with severe vasculitis secondary to Bartonella infection. The patient was treated with a systemic methylprednisolone 500 mg, anticoagulant (Enoxaparin sodium 60 mg) and Rifampin (300 mg). Three month after disease onset, the BCVA in the right eye improved to 0.1. For photographs and medical records that consisted possible identification of the patient, a consent form was obtained from the patient for use of publication.

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ACKNOWLEDGMENTS

The authors thank Professor Jin-Soo Lee, Department of Internal Medicine, Inha University School of Medicine, for his help with the in-house IFA analysis.

Footnotes

Funding: This research was supported by the Bio & Medical Technology Development Program of the National Research Foundation of Korea (NRF), funded by the Korean government, the Ministry of Science and ICT (MSIP) (NRF-2017M3A9E2056458).

Disclosure: The authors have no potential conflicts of interest to disclose.

Contributed by

Author Contributions: Conceptualization: Woo M, Kim SW. Investigation: Woo M, Ahn S. Writing – original draft: Woo M. Writing – review & editing: Ahn S, Song JY, Kim SW.

References

1. Kwon HY, Im JH, Lee SM, Baek JH, Durey A, Park SG, et al. The seroprevalence of Bartonella henselae in healthy adults in Korea. Korean J Intern Med. 2017;32(3):530–535. [PMC free article][PubMed] []
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Category:

Bartonella, Eye Issues, research, Treatment

Breakthrough Paves Way For New Lyme Disease Treatment

https://www.newsleader.com/story/news/2019/06/17/new-lyme-disease-treatment-cure-ticks-virginia/1456187001/

Breakthrough paves way for new Lyme disease treatment

, Staunton News Leader
June 17, 2019 

A Virginia Tech biochemist has discovered the cellular component that contributes to Lyme arthritis, a debilitating and extremely painful condition that is the most common late stage symptom of Lyme disease, a press release said.

According to the release from Virginia Tech, the biochemist, Brandon Jutras, found that as the Lyme-causing bacteria borrelia burgdorferi multiplies, it sheds a cellular component called peptidoglycan that elicits a unique inflammatory response in the body.

“This discovery will help researchers improve diagnostic tests and may lead to new treatment options for patients suffering with Lyme arthritis,” said Jutras, lead author on the study. “This is an important finding and we think that it has major implications for many manifestations of Lyme disease, not just Lyme arthritis.”

Lyme disease is the most reported vector-borne disease in the country, and in Virginia reports have increased by more than 6,000 percent in the last fifteen years. The Centers for Disease Control, estimates that approximately 300,000 people are diagnosed with Lyme disease annually in the United States. Scientists predict that the number of people who become infected Lyme will increase as our climate continues to change.

Jutras — an assistant professor of biochemistry in the College of Agriculture and Life Sciences and an affiliated faculty member of the Fralin Life Sciences Institute — and his collaborators recently published their findings in the Proceedings of the National Academy of Sciences.

According to the release, the PNAS paper was four years in the making, and Jutras began this research during his post-doctoral fellowship in the lab of Christine Jacobs-Wagner, a Howard Hughes Medical Institute Investigator and professor at Yale University.

“Nowadays nothing significant in science is accomplished without collaboration,” said Jutras. Co-authors on this paper ranged from bench scientists to medical doctors and practicing physicians. Dr. Allen Steere, a Harvard doctor who originally identified Lyme disease in the 1970s, assisted Jutras with his research and provided access to patient samples.

The research could provide a new way to diagnose Lyme disease and Lyme arthritis for patients with vague symptoms based on the presence of the cellular component called peptidoglycan in synovial fluid.

Read: Every spot in Virginia is a hotspot for ticks

The press release said, the team found peptidoglycan is a major contributor to Lyme arthritis in late-stage Lyme disease patients. Peptidoglycan is an essential component of bacterial cell walls. All bacteria have some form of peptidoglycan, but the form found in the bacteria that causes Lyme, borrelia burgdorferi, has a unique chemical structure. When the bacteria multiply, they shed peptidoglycan into the extracellular environment, because its genome does not have the appropriate proteins to recycle it back into the cell.

“We can actually detect peptidoglycan in the synovial fluid of the affected, inflamed joints of patients that have all the symptoms of Lyme arthritis but no longer have an obvious, active infection,” said Jutras in the release.

Peptidoglycan elicits an inflammatory response and the molecule persists in the synovial fluid, which means that our bodies continue to respond, without mounting a counter response.

Receptors in our immune system sense bacterial products and, depending on the individual’s genetic predispositions, may determine how strongly a patient’s body reacts to peptidoglycan.

The next phase of Jutras’ work is to use methods to destroy the peptidoglycan, or intervene to prevent a response, which could get rid of Lyme disease symptoms. According to the release, Jutras predicts that with either therapy patients would start recovering sooner.

Breakthrough paves way for new Lyme disease treatment, as discussed in this video provided by Virginia Tech. Video provided by Virginia Tech, Staunton News Leader

Clinical samples included in this study were obtained from patients that had confirmed cases of Lyme disease under the guidelines of the CDC, but virtually all did not respond to oral and/or intravenous antibiotic treatment, the release said. The presence of peptidoglycan in these patients’ synovial fluids may explain why some people experience symptoms of late stage Lyme disease in the absence of an obvious infection. In this case, the usual antibiotic treatments for Lyme disease would no longer be helpful, but this discovery might provide avenues for new treatments, the press release said.

Members of the Jacobs-Wagner lab purified the peptidoglycan and removed all other bacterial components and asked: is peptidoglycan all on its own capable of causing arthritis in a mouse model?

According to the release, within 24 hours post-injection, mice presented with dramatic joint inflammation, indicating that peptidoglycan can cause arthritis.

Jutras is continuing his research at Virginia Tech on peptidoglycan by more thoroughly studying its chemical composition to determine how it is able to persist in the human body. This will also help further the understanding of how this bacterial product contributes to other manifestations of Lyme disease.

“We are interested in understanding everything associated with how patients respond, how we can prevent that response, and how we could possibly intervene with blocking therapies or therapies that eliminate the molecule entirely,” Jutras said.

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**Comment**
This article brings up more questions than answers.
1) Were these patients used for this study truly treated appropriately to begin with?  For example, was the mono-therapy of doxycycline only used for a short period of time?  This treatment has been shown again and again to have treatment failures from the beginning of time. For examples of effective treatment:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  In a nutshell, effective treatment takes into account pleomorphism, polymmcrobialism, and biofilm. Doxy alone will not do these things.
2) Would an anti-peptidoglycan treatment only be a bandaid covering up a systemic infection? Everything I know about borrelia would answer a resounding “yes,” to this question.  While that may not be a bad thing, we must be honest about what the treatment’s really doing as well as the fact borrelia can persist in the human body, something The Cabal isn’t admitting at this point. Again, we truly need to end this Lyme War and according to microbiologist Tom Grier, that isn’t going to happen until post mortem studies are completed:  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/ Isn’t it a bit ironic that The Cabal is just fine with creating a patentable drug but NOT fine with doing the proper science that would put all of this to rest?
3) Bandaids on symptoms are used all the time to lesson pain and other symptoms; however, they shouldn’t be used at the expense of true, effective treatment for a systemic infection that’s relapsing in nature. In the case of Lyme disease, that would simply mean long-term antimicrobials. While I do not know the study parameters used here my guess would be the treatment that “didn’t work” was the mono-therapy of doxycycline which certainly doesn’t work for many coinfections such as Babesia, as well as the fact Eva Sapi has shown it to push the spirochete into the noncell wall form invitro:  https://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR
Just this year another study was done about it by Caskey et al.:  https://www.ncbi.nlm.nih.gov/pubmed/31057493
In a nutshell, using an anti-peptidoglycan without tandem antimicrobials could allow an infection to worsen over time to cause refractory (unmanageable) disease in patients.

This same thing can happen to Lyme/MSIDS patients who have been given catabolic steroids such as prednisone for inflammation.  Without tandem antimicrobials to continue a full-court press on pathogens, the steroids dampen the immune system and allow the pathogens to strengthen. Ask any ILADS trained doctor and they will say the same.  For an example:  http://danielcameronmd.com/steroid-use-can-lead-long-term-treatment-failure-lyme-disease-patients/  Excerpt: 

Treatment failures were found in Lyme arthritic patients who were treated with intramuscular (IM) benzathine penicillin following steroids. [3]

In another study, two patients were ill for 3 years and one patient for 6 years despite receiving intravenous (IV) ceftriaxone. The authors explained, “Patients unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.” Dattwyler et al. from Stony Brook Medical Center found an “association of steroid use with an increased failure rate or worsening of disease is understandable in view of the well-known effects of these agents on the inflammatory and immune responses.”

Dattwyler advised against the use of steroids in Lyme disease patients based on these two studies. “In view of the strong association between the use of steroids and the lack of response to antibiotic therapy, we believe that glucocorticoids should not be used in the treatment of Lyme borreliosis.” [2]

This article highlights yet again the importance of needing the right research to be done. The Cabal continues full-steam ahead doing research built upon false premises that could hurt patients in the end.

 

Category:

Inflammation, Lyme, research, Treatment