410 – Lyme & ALS
Severe cases of Lyme disease can be misdiagnosed as ALS, Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease.
Excerpted from lymenet.DE: http://www.lymenet.de/indexordner/ials.htm
When I published my work on metronidazole in Lyme around 20 patients contacted me and said they had Lyme AND ALS.
Once I had decided there may be a connection between the diseases I encouraged every ALS patient I came across, and a few physicians to test for Lyme. All told that is about 30. This is the most important group for they were unselected. There were NO negatives in this group and for the most part they were either IgG or IgM Western Blot positive, mostly to CDC criteria (which is over strict and ignores the 39kDa line)
If we were to take 150 Lyme patients we would be VERY surprised to have 150 positives, more like 100. However many of the above were pre-selected (why would you contact me if you were diagnosed ALS but Lyme negative, I would be snake oil.).
BUT, if the diseases were independent, we would expect a MAXIMUM of 100 cases in the whole of the US, so 150 becomes a significant number.
Now, those patients who were diagnosed ALS and tested Lyme positive carried on to develop the sequelae of ALS. Last Thursday we lost Dean Chioles who has a web page at http://www.shoptown.com/dean/ . Note that he was diagnosed with Lyme in 1998, before I published anything on Lyme.
We should also remember: Brian Pierson and Katherine Crowe who we also lost, both Lyme positive. Brian was 43 years old or so.
Now there have been 5 papers that describe clinically diagnosed ALS patients with Lyme reactive serologies (including the Halperin paper which finds a statistically significant number of Bb positive patients with ALS) and one letter by Mandell, Steere et. al. NEJM 1989;320:255-6 which found NO Bb antibodies in any ALS patients.
The responsibility is now with Mandell, Steere et. al. to come forward and explain how they can find NO Lyme positive ALS patients when I can find them so easily and even ALS patients themselves can see the connection.
How about it Dr Steere, this is an open venue? Perhaps one of the Yale workers will read this and we can enter into a debate that will explain why this connection has been stalled for 12 years.
With best regards to all.
Dr Martin Atkinson-Barr
Excerpted from MERCURYNEWS.COM ( Posted: 1/22/2010 )
But Fenolio is proving the doctors wrong. Instead of getting worse, he’s growing stronger each day, thanks to antibiotics. That’s because he doesn’t have Lou Gehrig’s disease, which isn’t curable. He has Lyme disease, which is.
Lyme disease, a bacterial illness spread by ticks, is a poorly understood and strangely controversial illness that has been sweeping the country since it was discovered in Connecticut in the 1970s. While still rare in California, there were 28,921 confirmed cases and 6,277 probable cases in the United States in 2008, nearly twice as many as in 1994.
But Lyme experts suspect there could be 10 times that many. That’s because when not treated immediately, Lyme can hide in the body for years and then attack, masquerading as anything from heart disease to arthritis to lupus. Folks might not even know they’d been bitten. And the tests for Lyme disease are notoriously unreliable.
Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly sees patients who have been misdiagnosed with chronic fatigue syndrome or Parkinson’s disease.
“I saw a new patient the other day who had weird symptoms and had gone to the Mayo Clinic for a complete work-up,” Stricker told me. “All they could come up with was fibromyalgia,” a syndrome characterized
”How could you miss that little tidbit of her history?” he wondered.
The original article is no longer available. You can learn more about Bart Fenolio at: http://www.caringbridge.org/visit/bartfenolio/mystory
Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig’s disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor — and the treatment reversed his symptoms and saved his life.
From LymeBlog.COM ( Posted: 4/22/2006 )
Obituaries: Emmy-winner Scott Brazil dies of ALS and Lyme disease at 50
Lyme/ALS success story: Bart Fenolio
Only through the persistence of Heidi, his wife of 46 years, and their scientist son and social-worker daughter was Bart given a series of Lyme tests that came back positive. He says his doctors at Kaiser Permanente insisted he had ALS even though he began to improve with antibiotics, and he left Kaiser to get the treatment he needed.