Round up on recent Lyme research news

Over the last few months, there has been a number of reports, papers, and studies announced on research for improving diagnosis and treatment of Lyme disease.

In this latest blog we’ll aim to give an overview of some of these studies.

Disulfiram for treatment of persisting symptoms

Figures from the U.S suggest around 10% – 20% of patients still experience symptoms after treatment, and a Caudwell LymeCo patient survey found that a third of those with Lyme disease in the UK continue to suffer even after receiving the recommended antibiotic protocol.

Due to inaccurate or unreliable testing, it is difficult for doctors to understand or confirm the cause for persisting symptoms. Could it be persistent infection, or reinfection? Or has Lyme disease triggered a separate condition? Or are symptoms down to something other than Lyme disease? Without a test for cure, it’s currently difficult to tell. There is a large amount of controversy around the term Post Treatment Lyme Disease Syndrome (PTLDS) but what is clear is that antibiotics do not cure every patient, especially if treatment has been delayed.

A new clinical study began in July of this year at Columbia University Irving Medical Centre after the FDA-approved drug Disulfiram was shown in a laboratory setting to be effective in the killing of the bacteria that cause Lyme disease. Also known as “Antabuse”, it’s typically used to treat alcoholism, but studies screening thousands of drugs to see which might prove to be lethal to Borrelia and safe for human tissue identified Disulfiram as being particularly fit for purpose.

Image credit: Lymedisease.org

The Columbia University study has 24 participants who have received treatment for Lyme disease, but have persistent symptoms, particularly relating to chronic fatigue. It will focus on finding out if the drug is safe for patients with a history of Lyme disease, and what the optimal treatment duration would be.

Though there are some rare reports of Disulfiram causing psychiatric side effects in patients, comments and testimonials from those with persisting Lyme symptoms being treated with the drug – in the study or privately by their doctors – seem to be very positive. Many are calling it ‘the magic bullet’ when it comes to Lyme disease treatment. However, full testing and observation still needs to take place in order to evaluate the side effects, tolerability and effectiveness of the drug. This particular study should be completed by March 2021, and we look forward to reading the results.

Find out a bit more about how disulfiram works, and on the original study that found its possible use against Lyme disease here.

At the recent ILADS conference in the U.S, Richard Horowitz, MD discussed his study of treating patients with a drug called Dapsone alongside antibiotics, in place of Disulfiram, in order to discover whether it’s more easily tolerable and able to work within a shorter treatment period, at a lower dose.

Interestingly, Columbia University are also running a second study on whether chronic pain and/or fatigue can be reduced by of meditation and Kundalini yoga, as well as a “functional brain imaging study to see if patients with Lyme disease have hyper-active pain brain circuits”.  Find out more about this on their webpage.

Global Lyme Alliance launches its first observational study into Lyme disease treatment

Image: Global Lyme Alliance

As a further move towards scientific and clinical validation of non-standard treatment protocols, Global Lyme Alliance (GLA) has announced that they are conducting their first observational study to “determine the effectiveness of non-validated, physician-developed Lyme treatment regimens“.

As mentioned above, the current standard antibiotic treatment protocols do not cure every patient, and this is intended to be a step towards investigating the effectiveness of other kinds of treatment protocols used by Lyme disease specialists and physicians.

GLA says they have assembled a team of experts in clinical project development and management, regulatory compliance, biostatistics and Lyme disease nursing. 

Their first study will focus on the treatment regimen developed by Joseph Jemsek, M.D., the founder of the Jemsek Specialty Clinic of Washington D.C.

The study will look to make clinical assessments following the treatment regimens, as well as assessing its effect on quality of life.

Timothy Sellati, Ph.D., GLA’s Chief Scientific Officer said that, “by collaborating with multiple prestigious academic partners, our hope is that at the end of this study we’ll identify biological-based indicators of treatment success that can be broadly used in evaluating other treatment options being pursued by Lyme patients suffering from persistent symptoms”. (1)

Check out the details in their press release here. We look forward to finding out more about the study and the partners involved.

A 15 minute Lyme disease diagnostic test for GPs

News broke last month that scientists at the Columbia University School of Engineering and Applied Science had found a rapid detection test that was able to confirm Lyme disease bacteria within 15 minutes.

It’s claimed that this test has a similar performance to the current standard two tier testing of an ELISA and immunoblot test, but without the need for a laboratory, experienced scientists and a wait of a few hours for results.

The researchers evaluated 142 samples, including patients with early Lyme disease, healthy individuals from areas where Lyme disease is endemic, and those with Lyme arthritis. They first screened a set of known diagnostic Lyme disease biomarkers for their ability to detect Lyme disease infection. They then tested the top three biomarkers using a standard enzyme immunoassay, and then mChip-LD, an advanced microfluidic platform developed by Sam Sia, to test the samples. (2)

Image credit: Today’s Practitioner

One of the benefits of this test is that it could easily be used directly in a doctor’s office, removing the need to send the samples out to a laboratory, the results of which can then take weeks to get back to a patient.

You can read some articles on it here and here.

The paper, published on the Journal of Clinical Microbiology is here.

Potential issues around this test are that:

1) the authors of the study used published assessments of the standard US two tier test as their comparator for measuring sensitivity, rather than using the same samples directly in parallel during the study, so a proper trial needs to be done to obtain the true value of this test.  And;

2) The new assay they refer to is still looking for an antibody response, therefore it still has the disadvantages of the current tests in terms of questions around reliability and narrow time windows for accurate results.

We have also received comments from scientists that though these tests may be useful in the US, where Lyme disease is more prevalent; in the UK, there is not enough evidence to suggest that GP practices see enough cases of Lyme disease to make the much greater cost per test viable.

The future for research in the UK

The fact that more and more research is taking place into improving diagnosis and treatment of Lyme disease is a positive thing, and we look forward to hearing the outcome of these important studies. However, it is important that research also takes place in the UK, on UK patients with UK strains of the disease.

We also look forward to the possibility of co-funding a project with the Department of Health and Social Care to look at more innovative approaches to diagnosing Lyme disease, and what findings this study will bring.

Next week, Caudwell LymeCo is attending a research workshop hosted by The NIHR Health Protection Research Unit in Emerging and Zoonotic Infections to hear discussions on the current state of research in the UK, and we hope to have some interesting news to share with you from this session in due course.

DISCLAIMER: Caudwell LymeCo has no conflict of interest or involvement with any of these studies, and aims to give an impartial and balanced overview of the research that is taking place.

(1) Cited from Global Lyme Alliance press release, Nov 2019.

(2) Cited from Columbia University School of Engineering and Applied Science. (2019, October 11). New test diagnoses Lyme disease within 15 minutes. ScienceDaily. Retrieved November 14, 2019 from http://www.sciencedaily.com/releases/2019/10/191011112246.htm


One thought on “Round up on recent Lyme research news

  1. Well written and good links. Historically, Columbia has not been a friend to Lyme sufferers in the US. Based on their track records and questionable relationship to the CDC, they do little to advance the cause that is not a money-maker for them. Additionally, an antibody-based test will have dubious value. PCR testing is what is needed. Funds are needed to advance research by Dr. Rajanas. His lab is struggling. There is currently some controvery involving Dr. Kim Smith,as to who did what “first” with respect to DSF.. Dr. Smith’s claim has been vigorously disputed by people in the Lyme community who should have first-hand knowledge. Smith seems to have better PR. Dr. Rajanas is not comfortable in the high profile world of showmanship and public relations. He is a researcher. Specifically, he is trying to determine the best delivery method of DSF to primarily avoid neuropathy as a side effect. Also to prove the active mechanism in DSF that acts on Borrelia. Then the is the little matter of dosing, which at this point is entirely based on patient-driven, anecdotal information. That info is being collected using FB and quantified by Joseph Kulandai, an Aussie dad with a sick Lymie daughter. (He is also a microbiologist and chemist). Rajanas also needs, to test DSF impact on Babesia…and last but not least, run similar high throughput tests for Bartonella. We don’t know if DSF actually works on Bart. If Rajanas formulates a new version of DSF that will minimize the side effects, it is going to be a huge moneymaker. US Pharmacies are currently sold out and backlog ordered on DSF in tablet form. I have heard (but can’t confirm) that compounding pharmacies still have the powder. I am not knowledgable about the high profile world of foundations, but they can’t exist if they just give money away with no ROI. I am a Lyme mom and have followed the Caudwell family on Instagram, especially poignant as my son is 22 and the same age as one of John’s precious sons. Hopefully, if LymeCO would consider any funding for Dr. Rajanas, I could put you in touch with the people who handle this. (Not me – just a mom.) Please let me know if you have any questions.

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