LYMEPOLICYWONK: Study finds antibiotics effective in treating MS.
A new Canadian study finds that antibiotics can slow the progress of multiple sclerosis (MS). The study, published in the New England Journal of Medicine, used minocycline to treat early relapsing remitting MS. The annual cost of treatment with antibiotics ($600) is substantially less than the cost of typical MS treatment, which ranges from $20,000 to $40,000. Researchers say the new treatment option will improve access to treatment for people with MS as well as reduce costs.
An association between Lyme disease and MS has long been suspected. MyLymeData, the big data project of LymeDisease.org, includes questions about patients with Lyme who were initially misdiagnosed with MS. In a previous blog, I reported that of patients misdiagnosed, 14% reported that their misdiagnosis was with MS. Many patients who responded to our subsequent survey who had been misdiagnosed with MS reported that treatment with antibiotic were helpful.
Patient groups are beginning to lead the charge in patient-centered research. MyLymeData was developed to promote and assist research important to Lyme patients. The Multiple Sclerosis Society of Canada and its affiliated Multiple Sclerosis Scientific Research Foundation (MSSRF) funded the Canadian study.
Participants in the trial who experienced their first demyelinating symptoms were randomized to receive 100 mg twice daily of the oral minocycline or placebo. The study found a 28% reduction in the number of patients on the antibiotic who developed full blown MS.
We view MyLymeData as the first step in the Manhattan Project for Lyme disease. If you are not a part of MyLymeData, please enroll today.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.
In due time, I believe MS & Lyme Disease are the same disease. I’ve had Lyme Disease since 1990.
I’ve known this for years, but try having an RN tell a doctor what to do, haha, doesn’t bode well. I try to educate the patients, but most don’t listen. The sad part of knowing this information prior to any study is seeing patients you know who could benefit from antibiotics, but instead are on the same MS regimen and getting worse and they don’t know why.
So this means Canadian MD’s who are not allowed to actually treat “Lyme” Disease-because it does not exist there-CAN give you antibiotics for MS as part of a control group-to save money seemingly- and for other conditions like acne!!And they call us “Lyme Loonies”…
Thanks for putting two and two together to discuss the probable relationship between Lyme disease and multiple sclerosis. As Dr. Steven Phillips has stated multiple times, Lyme disease is clinically indistinguishable from multiple sclerosis:
Where CDC Guidelines Fail, Leading Lyme Doctor Succeeds (Part 1)
http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html
My question is, why don’t the researchers and MS patient funding organizations at least discuss the (obvious) possibility that the minocycline may be treating an active infection and that it is an infection that could be driving the autoimmune response responsible for neurological damage. Did the authors try address this, but did the NEJM (and Science Direct) reviewers and editors act to repress this train of thought? Why is no one in the press asking this question?
It is also interesting how minocycline is characterized in the press release as an “acne drug” that is “safe and affordable“, whereas further antibiotic treatment for Lyme patients has been characterized in previous NEJM articles as dangerous to patients.
Once again medicine seems to be driven by politics as much as the genuine search for truth.
I have an personal interest in this story, because while I am an American citizen, my Canadian maternal grandfather died at a young age from MS, leaving my grandmother and her five children (including my mother) traumatized and impoverished. When my sister was diagnosed with MS, by multiple physicians in the US, I strongly encouraged her to get evaluated for Lyme disease, by an ILADS (International Lyme and Associated Diseases Society) affiliated physician. My sister was diagnosed by this physician with Lyme disease and bartonella. She fully recovered with long-term oral antibiotic treatment and is currently living full active life with no medications.
Dr. Richard Horowitz has found that 70% of the audience in his LD talks report having odd leg muscle symptoms. He notes that the Borrelia flagellum are composed of myelin and our immune system attacks that portion of the Borrelia and then perhaps switches over to the myelin sheath around our own efferent nerves in an autoimmune response. MS researchers are not yet willing to consider this as a direct antibiotic response but write of the amazing anti-inflammatory properties of minocycline. Many diseases are caused by microorganisms and the inflammation they create but whole careers in medicine and books written in the past have concentrated on things like the Ulcer Personality.
For those of you following the retroviral connection to immunodeficiency and chronic borrelia infection, I have read that minocycline is also a antiviral and an anti-retroviral.
Links, if allowed:
“Minocycline versus Doxycycline in the Treatment of Lyme Neuroborreliosis”
https://academic.oup.com/cid/article/30/1/237/322583/Minocycline-versus-Doxycycline-in-the-Treatment-of
“A Novel Use for an Old Drug: The Potential for Minocycline as Anti-HIV Adjuvant Therapy”
https://academic.oup.com/jid/article/201/8/1115/863343/A-Novel-Use-for-an-Old-Drug-The-Potential-for
“Use of minocycline in viral infections”
https://www.researchgate.net/publication/51175182_Use_of_minocycline_in_viral_infections
My stepfather passed in 1997 with MS and my father died with ALS in 2007. When i began exhibiting the milder symptoms of lyme, my thoughts always turned to my fathers symptoms at the beginning of their diseases. I remember their symptoms very well. My stepfather’s first symptoms were spasms and erratic movements in his legs when he went to bed, visual disturbances and muscle weakness in his limbs. The same symptoms occurred with my father except that his was very localized to his right arm and shoulder. My father had suffered a heart attack a few years before his death and I can’t help but think it was most likely due to Lyme infecting his heart.
If we really think about the names of these diseases- …schlerosis.. and Lyme, they really only describe the place where it was discovered or the name of the scientist who discovered it or the symptoms and they are not specific for any virus, bacteria, cancer or other bug and yet it’s well documented that spirochetes cause neurological damage. Both my fathers ( and I) lived in the mountains of northern Virginia and were avid hikers and campers and just outdoors people. I’ve probably had Lyme for many years. My brother was treated for Rocky mountain spotted fever back in 76. I’ve been bitten hundreds of times in my life. But it wasn’t until about 2008, due to hormonal changes and stress that my immune system began to turn on itself and I’ve dealt with a host of autoimmune and neurological illness like Shingles since then until I was diagnosed last year with Lyme, Babesia and Bartonella.
My symptoms come and go now and sometimes I think I’m cured until suddenly I wake up and it seems they are back with a vengeance. I haven’t been doing well lately and I’m feeling discouraged. At the moment I’m dealing with disturbing dementia and exhaustion. I walked into my kitchen yesterday and found a huge pot of boiling water on the stove at 2pm. I didn’t remember making that at all.