Mascoma lake ALS cluster points to Lyme disease

People who live around Mascoma Lake are 25 times more likely to get ALS than other people in New Hampshire. [1] When this fact became published by Neurologist Dr. Elijah Stommel of the Dartmouth-Hitchcock Medical Center, it caused quite a stirr in the ALS research community. Mascoma Lake lies in New Hampshire. Let's look at the Lyme incidence in US states in 2008:

US States with the highest Lyme incidence in 2008

1 New Hampshire 113
2 Delaware 88
3 Maine 66
4 Vermont 58
5 Pennsylvania 56
6 Maryland 37
7 New Jersey 32
8 New York 29
9 Minnesota 23
10 Wisconsin 20
11 Massachusetts 16
12 Virginia 10
13 California 0.6

Based on MMWR Vol, 57 No. 53; Jan 9, 2009

Number of cases from [2], using 2008 population table at [3].

This shows us that people in New Hampshire run a very high risk of getting Lyme disease - a chance of more than 0.1% every year, or roughly 10% over a lifetime, taken current trends into account for both life expectancy and reported Lyme cases.

Is it a coincidence that the United States' biggest ALS hotspot lies in the state where the risk of getting Lyme disease is highest? Is it a coincidence that other ALS clusters have been found[4] in Vermont and Maine, ranking resp. #3 and #4 in the US for Lyme disease incidence?

Adjacent to the south of Mascoma Lake lies the Enfield Wildlife Management Area:

ALS cluster at Mascoma lake

The Enfield Wildlife Management Area is a Lyme hotspot, hosting the white-tailed deer[5], a notorious reservoir[6] for Lyme borreliosis. The many ponds, marshes and open spaces make the Enfield Wildlife Area an endemic area for the ticks that transmit Lyme disease.

Much has been speculated about the cyanobacteria in the lake being to blame for the nine ALS deaths that occurred around it in recent times.

But what about the Borrelia bacteria from the deer, small rodents and songbirds from the adjacent forest? It seems strangely biased to peg the ALS cluster around the lake instead of around a major source of Lyme neuroborreliosis - a known cause of ALS. It seems that the researchers did not want to open any cans of worms and wisely steered clear of the highly politicized Lyme "controversy".

New Hampshire is indeed the number one Lyme hotspot in the United States, but until the summer of 2011, doctors were not allowed to treat Lyme disease with long-term antibiotics. If they did, they faced disciplinary action or even a revocation of their licence to practice:

N.H. doctors can now treat Lyme disease with long-term antibiotics[7]

DOVER — New Hampshire residents suffering from chronic Lyme disease will no longer have to worry about finding a doctor who will treat with long-term antibiotics.

A bill, HB 295, that states doctors are free to treat Lyme disease with long-term antibiotics and cannot be punished by the Board of Medicine because of such prescriptions was passed Thursday.

The bill's prime sponsor Gary Daniels, R-Milford, said the bill is an important step in helping both patients and doctors as it acknowledges chronic Lyme disease is a real ailment.

The text of the bill reads, "No licensee may be subject to disciplinary action solely for prescribing, administering, or dispensing long-term antibiotic therapy for a patient clinically diagnosed with Lyme disease, if diagnosis and treatment has been documented and monitored in the physician's medical record for that patient."

Daniels said Thursday, "The problem we were encountering, and it seems to be a nationwide trend, is there are two standards for treatment and there seems to be favoritism over one standard that basically says there's no such thing as chronic Lyme disease."

He added that typically, if people have Lyme disease for longer than the four week average associated with the disease, they're instead treated for other diseases such as fibromyalgia or chronic fatigue syndrome.

"There can be such a thing as chronic Lyme disease and it can be treatable with long-term antibiotics," Daniels said.

He said doctors would often avoid treatment with long-term antibiotics due to fear of being brought up on charges by the Medical Board simply because it wasn't recognized as the appropriate treatment for Lyme disease. Patients would therefore have a hard time finding doctors in New Hampshire to treat the disease and would often seek help in other states.

"We're trying to set in place an environment where doctors are free to treat with long-term antibiotics and the bill says they can't be punished solely because they prescribe or administer long-term antibiotics," Daniels said.

The bill's language regarding long-term treatment with antibiotics is only in reference to Lyme disease.

Daniels said such a move just makes sense, especially when long-term antibiotics are already used to treat for many other diseases such as acne, and cancers.

New Hampshire, he said, has the highest incidence of Lyme disease per capita in the country, a statistic that played a large role in his sponsorship of the bill. He had been asked to bring the issue out into the open by a friend who suffered from Lyme disease for five years before she was diagnosed.

Daniels said the hope is Lyme disease and the instance of chronic Lyme disease will be better publicized and better understood because of this legislation.

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1.  Californialyme    Saturday, March 17, 2012

Check out The ALS/Lyme Page. This is a lot of evidence ALS may be a TBE virus variant.
There is, if it's still going on, a free IV Rocephin (best treatment for Lyme) for ALS study being done by Mass Gen hospital.

My advice from co-moderating an online ALS/Lyme group: DO NOT TAKE ORALS ESPECIALLY DOXY IF YOU HAVE ALS. IV ROCEPHIN or IM BICILLIN are what are connected with success stories.

The wrong antibiotics can speed up progression with ALS Lyme. Read the ALS/ Lyme page.

This matches what is known of TBE viruses.

The ALS/Lyme Page

Thank you-

Locally we've had 3 longterm survivors who did IV Rocephin, Mepron & Ledum as tx.

2.  Sam Powers    Thursday, June 18, 2015

Do you have article citations instead of links? The links don't all work anymore.

3.  Sarah Vaughter    Friday, June 19, 2015

I suggest trying to find copies of removed articles in the Internet Archive ("Wayback Machine"). I always mirror PDF's and absolutely vital articles I download a copy of as well, but it is practically impossible to copy the Lyme/ALS part of the Internet, or one would have to dedicate their life to it..

What I do in my articles however is quote important passages, summarise the findings, reproduce important graphs and list sufficient information to be able to find the materials elsewhere, if they still exist.

I assume you're referring to broken link (1). I found a similar article here from the same Neurologist:


I have updated my book with this new link, and saved a copy of that page in case it disappears.

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