Archive for the ‘Treatment’ Category

Kelly Osbourne on Lyme

http://www.usmagazine.com/celebrity-news/news/kelly-osbournes-book-details-lyme-disease-battle-excerpt-w474949

Kelly Osbourne bought a reindeer sanctuary for Ozzy’s birthday which led to a tick bite she burned off with a match. Doctors diagnosed her with epilepsy, and the next ten years were marked with traveling pain until she finally had a seizure.

She was familiar with Philip Battiade at Infusio, an alternative medicine practitioner, who treated her brother for MS, and made an appointment and flew to Germany for two weeks to start stem cell therapy.  http://www.infusio.org/medical/lyme-disease/

Osbourne kept quiet about Lyme disease for fear of pharmaceutical companies coming after her for going to Germany for alternative treatment.

She’s written the book, There Is No F*cking Secret, to be published on April 25, 2017.

 

Category:

Activism, Lyme, Treatment

Sulfa Drugs Against Stationary Phase Bb in Vitro

http://www.mdpi.com/2079-6382/6/1/10

Jie Feng, Shuo Zhang, Wanliang Shi and Ying Zhang *
Department of Molecular Microbiology and Immunology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD 21205, USA
Academic Editor: Christopher C. Butler
Received: 19 January 2017 / Revised: 7 March 2017 / Accepted: 14 March 2017 / Published: 22 March 2017

Abstract

Lyme disease is a most common vector-borne disease in the US. Although the majority of Lyme patients can be cured with the standard two- to four-week antibiotic treatment, at least 10%–20% of patients continue to suffer from prolonged post-treatment Lyme disease syndrome (PTLDS). While the cause for this is unclear, one possibility is that persisting organisms are not killed by current Lyme antibiotics.

In our previous studies, we screened an FDA drug library and an NCI compound library on B. burgdorferi and found some drug hits including sulfa drugs as having good activity against B. burgdorferi stationary phase cells. In this study, we evaluated the relative activity of three commonly used sulfa drugs, sulfamethoxazole (Smx), dapsone (Dps), sulfachlorpyridazine (Scp), and also trimethoprim (Tmp), and assessed their combinations with the commonly prescribed Lyme antibiotics for activities against B. burgdorferi stationary phase cells.

Using the same molarity concentration, dapsone, sulfachlorpyridazine and trimethoprim showed very similar activity against stationary phase B. burgdorferi enriched in persisters; however, sulfamethoxazole was the least active drug among the three sulfa drugs tested. Interestingly, contrary to other bacterial systems, Tmp did not show synergy in drug combinations with the three sulfa drugs at their clinically relevant serum concentrations against B. burgdorferi.

We found that sulfa drugs combined with other antibiotics were more active than their respective single drugs and that four-drug combinations were more active than three-drug combinations. Four-drug combinations dapsone + minocycline + cefuroxime + azithromycin and dapsone + minocycline + cefuroxime + rifampin showed the best activity against stationary phase B. burgdorferi in these sulfa drug combinations.

However, these four-sulfa-drug–containing combinations still had considerably less activity against B. burgdorferi stationary phase cells than the Daptomycin + cefuroxime + doxycycline used as a positive control which completely eradicated B. burgdorferi stationary phase cells. Future studies are needed to evaluate and optimize the sulfa drug combinations in vitro and also in animal models.

Category:

Lyme, research, Treatment

One Pill of Doxy Only Reduces Prevalence of Rash, Not Lyme Disease

https://www.lymedisease.org/single-dose-doxy-tick-bite-prevents-rash-not-lyme-disease/  This link shows that Daniel J. Cameron, MD MPH, states there has only been one study (Nadelman et al) on the effectiveness of 1 pill of doxycycline and only found a reduction in the number of erythema migraines (EM) rashes compared to the placebo group.  According to him, the IDSA 1 pill of doxy approach started in 2006 despite the fact that three previous prophylactic antibiotic trials for a tick bite had failed.

http://www.jem-journal.com/article/S0736-4679(17)30026-4/abstract  However, the authors of this recent study in the Journal of Emergency Medicine support the 1 pill of doxy approach.  It fails to mention the ILADS approach where Lyme literate doctors with much experience treating Lyme/MSIDS advise against 1 pill of doxy and the reasons stated above by Cameron.

He also states that the evidence is easily accessible in open access, peer-reviewed journals in PubMed and the National Guideline Clearing House.

Cameron states:

“ILADS 2014 guidelines used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system to conclude that the evidence for a single, 200 mg dose of doxycycline was “sparse, coming from a single study with few events, and, thus, imprecise.” 

 

According to Cameron Nadelman’s study had several other limitations:

“It was not designed to detect Lyme disease if the rash were absent.
The six-week observation period was not designed to detect chronic or late manifestations of Lyme disease.
It was not designed to assess whether a single dose of doxycycline might be effective for preventing other tick-borne illnesses such as Ehrlichia, Anaplasmosis, or Borrelia miyamotoi.”

Please spread the word and tell doctors.

 

 

Category:

Lyme, Treatment

MyLymeData to Present Results

My mom used to always say, “If you want something done right, do it yourself.”

That’s exactly what MyLymeData is all about. It uses big data research tools which allow patients to quickly and privately pool their experiences to determine which treatments work best. The project can accelerate research into the disease, by helping scientists identify the most promising areas to investigate.

“Up until now, studies of people with Lyme disease were few and far between,” according to Lorraine Johnson, CEO of LymeDisease.org, sponsor of the MyLymeData project. “The largest one funded by the National Institutes of Health enrolled 129 patients—more than 15 years ago.”

https://www.lymedisease.org/mylymedata-so-important/  Go to this link to hear Johnson present statistics about the abysmal lack of research on Lyme/MSIDS. (1 minute long)

A patient education conference called MyLymeData2017: Overcoming Lyme Disease will be held April 8 in San Ramon, California, and will present the results from the first national large-scale longitudinal study of patients with Lyme disease ever conducted, and will also include the following presentations: 

Lorraine Johnson, CEO of LymeDisease.org. “Latest Results from MyLymeData”

Ray Stricker, MD. “Designer Drugs for Lyme Disease: The New Pharma Frontier?”

Christine Green, MD, “How to Combat Stealth Pathogens Like Lyme & Co-infections”

Raj Patel, MD, “Treating Mold Illness in the Context of Lyme Disease”

Jennifer Sugden, ND, “Pediatric Lyme Disease”

The event will be held at the San Ramon Community Center, 12501 Alcosta Blvd., in San Ramon, from 1-5 pm on April 8. Pre-registration is $35. Admission at the door is $40.

Register here:  http://events.r20.constantcontact.com/register/event?llr=xsuluhcab&oeidk=a07edsnvpa3f512a2be

More than 7000 patients have enrolled since MyLymeData began in November 2015. This puts it in the top 10% of patient-powered big data registries in the nation. Recruitment for the project is on-going.

https://www.lymedisease.org/mylymedata/  Please have your voice heard and be a part of this project that is revolutionizing research done on Tick Borne Illness.

Category:

Activism, Lyme, research, Treatment

Medical Grants for Kids

http://www.uhccf.org/about/

Click on link to learn more about UnitedHealthcare Children’s Foundation, which provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their families commercial health insurance plan. Families can receive up to $5,000 per child ($10,000 lifetime maximum per child), and do not need to have insurance through UnitedHealthcare to be eligible. Children must be 16 or younger and living in the United States. Help can be for physical, occupational and speech therapies, surgeries, counseling, prescription medications, or medical equipment including: wheelchairs, orthotics, eyeglasses and hearing aids.

Click on Apply to see what is required to provide.

Category:

Activism, Lyme, Treatment