My brother-in-law (age 39) was told Jan '04 that he had ALS but someone mentioned we should check into possible Lyme's also. He had a blood bacteria test of some sort that should 1/16th of Lyme's bacteria?

Can anyone tell me the difference in symptoms between ALS/Lyme's ?

Where do you start to determine if it's Lyme's, is it a matter of trial & error regarding treatment. Are there special doctors for treating Lyme's?

Any help would be appreciated! Thank you in advance!

sister-in-Law to DAC

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Phil 4:13 "I can do all things through Christ who strengthens me"
 

[This message has been edited by krazykt1 (edited 12 June 2005).]
 

My Dad was diagnosed with ALS and he also has had a positive Lyme disease test. You need to find your brother-in-law a Lyme Literate Medical Doctor (LLMD). Go to the board on this site called Seeking a Doctor and post a request for his geographic area. State how far he is willing to travel. Someone will get back to you.

Many neurologists don't believe that Lyme disease may have caused the ALS symptoms. It's like talking to a brick wall. There are, however, theories that Lyme imitates many other diseases, or that some patients with ALS, MS, fibromyalgia, chronic fatigue syndrome, etc., may in fact be in late-stage Lyme disease.

You and your brother-in-law are about to enter a very controversial medical area--there is no cure for ALS and only one approved drug. If there is a chance that he is indeed suffering from Lyme disease, pursue it, keeping asking questions, don't get talked into any scams (becasue there are plenty), and keep reading this board--there are lots of very helpful members. I'm learning from them too.
 

Publish Date: 11/04/03

Frederick News Post, Frederick, Maryland

Staff photo by Doug Koontz

Tom Coffey was misdiagnosed with ALS when he was suffering from Lyme disease.
He is shown at the Evangelical Reformed Church United Church of Christ in
Frederick, where he is a member. On Saturday, Nov. 8, Dr. Gregory Bach of
Philadelphia, who diagnosed Mr. Coffey with Lyme disease, will speak about the
diagnosis, treatment and prevention of the disease. The program is open to the
public.

For almost a year, no one could figure out why Tom Coffey's health was deteriorating. Beginning in January 2001, the once-healthy Mr. Coffey, then 34, started having double vision and abnormally high blood pressure levels. Then came the sluggishness, the shortness of breath and the old man's shuffle.

Soon his metabolism increased to the point where Mr. Coffey, a Frederick resident, said his weight was just "falling off," 5 to 10 pounds a week. Then he developed Bell's Palsy (facial paralysis), difficulty swallowing, loss of balance and severe neck stiffness.

Even after numerous visits to more than five different specialists, Mr. Coffey still didn't know what was causing his illness. "

From the beginning to end, nothing went away; just more and more things kept
happening," said Mr. Coffey, a member of the Evangelical Reformed Church United Church of Christ in Frederick.

"We played ring around the rosy" visiting a lot of different doctors, he said.
In October 2001, Mr. Coffey woke up one morning unable to swallow his own
saliva and was taken to Frederick Memorial Hospital (FMH). Doctors ran multiple
tests and brain scans at FMH and later at Johns Hopkins Hospital. Mr. Coffey
said he was diagnosed with ALS, or Lou Gehrig's disease, and given six months to
live. Within a week, Mr. Coffey was home, living off a feeding tube and waiting to die. 'All that for a tick bite 'Then a glimmer of hope came to the Coffey family through a friend, who told them about a man who died of what doctors thought was ALS but turned out to be Lyme disease. The friend recommended Mr. Coffey see a Lyme disease
specialist. In February, Mr. Coffey traveled to Pennsylvania to see Dr. Gregory Bach, a
Philadelphia-area physician, who diagnosed him with Lyme disease. It's a bacterial infection usually transmitted by the bites of infected deer ticks. "I would have been dead, my kids wouldn't have had a father," said Mr. Coffey, a father of three. "All that for a tick bite."

After six months of antibiotics, Mr. Coffey said he was feeling more like himself; and after nine months, most of the symptoms had disappeared.Today, Mr. Coffey said he feels better than he has in years. Mr. Coffey isn't the first patient Dr. Bach has seen who was misdiagnosed. Dr. Bach said thousands of people with Lyme disease have been told they have arthritis, Lou Gehrig's, multiple sclerosis and various other conditions. Although the Centers for Disease Control and Prevention (CDC) reports an average of 16,000 cases of Lyme disease each year, Dr. Bach believes the actual number is
much higher. In fact, since Mr. Coffey's recovery, 10 other members of the Evangelical
Reformed Church were diagnosed with Lyme disease by Dr. Bach. Seeing how Dr. Bach's treatment saved Mr. Coffey's life and helped other church members, the Evangelical Reformed Church invited Dr. Bach to give a lecture on the disease. On Saturday, Nov. 8, Dr. Bach will speak about diagnosis, treatment and prevention of the disease from 3 to 5 p.m. The event, sponsored by the parish nurse program, is all about education to both physicians and patients. It will be
held at the church, 15 W. Church St. in Frederick, and is open to the public.
Margaret Stahler, parish nurse at the Evangelical Reformed Church, said more
than 100 health care providers in the county have been invited to learn more about the misunderstood illness.

"Most people think of Lyme disease as the immediate period after being bitten
by tick and ... bull's eye rash which really is only seen in about 50 percent of patients who get bitten by ticks," said Ms. Stahler, who was also diagnosed with Lyme disease by Dr. Bach.

Dr. Bach, who started studying the disease after his wife, Debra, was stricken, is the medical advisor to Rep. Joseph Pitts and Sen. Rick Santorum working on the Lyme Disease Initiative Act. To date, Dr. Bach said he has treated over 5,000 patients.
"We are trying to promote education and physician awareness," said Dr. Bach.
"And what is being told in the general public ... that Lyme is not a big problem and two weeks and you're cured ... is not true."Dr. Bach said Lyme disease is the most common infectious disease in the country, but most cases of the disease are missed.One reason the disease is missed is because some people may not be aware they are infected. Not everyone affected by Lyme disease develops the classic bull's-eye rash or flu-like symptoms accompanying infection.
Also, Dr. Bach said Lyme disease is the "great imitator" and mimics other
conditions. The ELISA test (enzyme-linked immunosorbent assay), which is widely
used to determine if a person has Lyme disease, is not reliable, Dr. Bach said.
One of his studies shows the test is inaccurate 50 to 90 percent of the time.
"I want the ELISA test removed from the market," he said about the test used
by the majority of doctors. Instead of the ELISA, Dr. Bach uses the "Western
Blot" test, urinalysis and DNA testing. If a patient is found positive based on
these tests and examination, Dr. Bach recommends three to six months of
antibiotics. The CDC recommends a person with Lyme disease receive antibiotic treatment for three to four weeks after onset.

Facts about Lyme disease
Lyme disease, named in 1977 when arthritis was observed in a cluster of children in and around Lyme, Conn., is caused by a bacterium, the spirochete Borrelia burgdorferi. Typically, it is transmitted to humans by the bite of an infected deer tick or larger dog tick. Some research believes it may be spread by other biting insects such as mosquitoes, fleas and lice. Dr. Bach believes the bacterium that causes Lyme disease is a "brother" to syphilis because of their genetic similarities and said it may be sexually transmitted. Untreated or inadequately treated Lyme disease can cause long-term chronic illness that often affects more than one system of the body. At times,
it can be debilitating and possibly fatal, said Dr. Bach.

Dr. Bach said he has seen patients suffering from seizures, chest pains, migraine-like headaches, vision problems, muscle spasms, arthritis-like joint pain, sinus infection, asthma, swallowing problems, heart dysfunction, chronic fatigue and GI problems. He also stressed the effects Lyme disease has can have on the brain, causing cognitive dysfunction. Some patients have had symptoms associated with Alzheimer's disease, memory loss and emotional changes like depression, anxiety, aggressive behavior and several other conditions.

Frederick Wenner, pastor of the Evangelical Reformed Church, knows firsthand the mental
effects of Lyme disease. Along with chronic fatigue, Pastor Wenner was plagued with depression. "You just lose contact with what's going on around you," said Pastor Wenner, who did not improve even when he was put on antidepressants. "Myself, I didn't have a lot of thoughts during that period. My mind is usually active and things are usually happening." Then Pastor Wenner went to see Dr. Bach last March and was diagnosed with Lyme disease. After several months of
antibiotics, Pastor Wenner said his depression has faded and he is back to
normal. Dr. Bach has been studying Lyme disease and other tick-borne diseases since
1989. Because of his wife's illness, Dr. Bach said he knows firsthand the pain
of the disease. "When she (my wife) was sick, I kept praying ... and said
whatever this is I don't care, just spare her and I'll do this for the rest of
my life," Dr. Bach said. "And, that's what I'm doing."
 

Bringing this post up for ALSLYME.. one of our very helpful memebers.

I dont know what your situation is, but I can tell you mine; I lived on a farm for 15 years, had lyme 7 years ago and was treated, but only for 30 days; had a tree and landscaping Co. for 15 yrs., and I recall one day I pulled about 40 ticks off my legs - I must have hit a nest or something!

But, all that aside, I can tell you I know for a fact that if i would have found a LLMD back when my symptoms first came on, 7 yrs ago, i wouldn't have these ALS symptoms. My condition today is directly related to improper testing, and not receiving appropriate treatment for way too long!

And as far as ALS goes, I think it should be called - WDKWCI which means "We Dont Know What Causes It". For a Neuro to tell me my ALS symptoms are NOT from Lyme (Borrelia Burgdorferi bacteria), without even testing at all, then what's causing it! Well, of course they will say, "it's WDKWCI. How absurd is this!

I have read as far back as 1988, where they have found multiple strains of Borrelia Burgdorferi bacteriums in ALS patients. How easy of a profession is it to be a Neuro - the majority of the time, they get away with saying, "MS - don't know cause and no cure, Parkinson's - don't know cause and no cure, ALS - don't know cause and no cure!

ALS - 1 drug in over 50 years, called Rilutek, so much for all the ALS research & funding. The Neuros will claim Rilutek is known to slow progression. Well, I'm here to tell you, that's BS, Rilutek, in my personal experience, INCREASED all my symptoms within 15 days of taking it - no wonder the Neuro wanted to hook me up with their Pulmonary Dept. immediately. I made a choice not to listen him, and that's when I found my LLMD, who couldn't take me off quick enough! My breathing improved within 1 week of Abx treatment for Lyme. Still to this day, I have not had to visit a Pulmonary Dept. - no thanks to the Neuro.

Did I mention, with appropriate testing (certainly not the ELISA test), I met the CDC criteria Positive for Lyme + coinfections Babesia and Ehrlichiosis.

Just keep reading this board, I wouldn't put anything past Lyme Disease! I think if it wanted to, it could achieve world peace! I think this Bacteria (and it's many strains) can do anything it wants - look at the huge variety of ailments it poses among us.

Find a LLMD, who has years of experience treating misdiagnosed cases of ALS and MS, and don't settle for anything but IGenex (CA) or Stonybrook (NY) testing facilities.

Oh, by the way, Johns Hopkins is using Rocephin (Lyme abx), in trials, with ALS and MS patients, in 2005. Why?

Did you know ~ The ALS poster boy, vacationed in Lyme, CT regularly. Lou Gehrig.

Good Luck and never give up!

So, they do not admit bacterial infections can cause symptoms that are suggestive of ALS, whatever that is. As a result, I would have to wonder what kind of antibiotic treatment they will administer. As we know, short term treatment will not eradicate a long existing bacterial infection like Lyme, if there are cases among the patient population they are treating.

Here is the Jan. 2005 news release talking about mouse research that is the basis for their current clinical trials in humans with ALS (can't find the human trial stuff, will keep looking):

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ANTIBIOTICS PROTECT NERVES IN MICE BY TURNING ON GENES
Large, Multi-Center Clinical Trial Planned in Lou Gehrig's Disease

A family of antibiotics that includes penicillin may help prevent nerve damage and death in a wide variety of neurological diseases, including Lou Gehrig's disease, dementia, stroke, and epilepsy, Johns Hopkins researchers have found.

The antibiotics' beneficial effects, discovered in experiments in the lab and with mice, are unrelated to their ability to kill bacteria, the researchers report in the Jan. 6 issue of Nature. Instead, the drugs squelch the dangerous side of a brain chemical called glutamate by turning on at least one gene, thereby increasing the number of "highways," or transporters, that remove glutamate from nerves.

photo: Jeffrey Rothstein and Sarjubhai Patel appear with data from the drug screen that revealed antibiotics' surprising role in nerve protection. Patel is now at the University of Montana.

Jeffrey Rothstein and Sarjubhai Patel appear with data from the drug screen that revealed antibiotics' surprising role in nerve protection. Patel is now at the University of Montana.

"It would be extremely premature for patients to ask for or take antibiotics on their own," says the study's leader, Jeffrey Rothstein, M.D., Ph.D., director of the Robert Packard Center for ALS Research at Johns Hopkins and a professor of neurology and of neuroscience. "Only a clinical trial can prove whether one of these antibiotics can help and is safe if taken for a long time."

In mice engineered to develop the equivalent of Lou Gehrig's disease, daily injections of an antibiotic called ceftriaxone, started just as symptoms tend to surface, delayed both nerve damage and symptoms and extended survival by 10 days compared to untreated animals. Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), in people causes progressive weakness and paralysis and ends in death, usually within three to five years of diagnosis.

"We're very excited by these drugs' abilities," says Rothstein. "They show for the first time that drugs, not just genetic engineering, can increase numbers of specific transporters in brain cells. Because we study ALS, we tested the drugs in a mouse model of that disease, but this is much bigger than ALS. This approach has potential applications in numerous neurologic and psychiatric conditions that arise from abnormal control of glutamate."

A large, multi-center clinical trial planned for the spring will help determine the best dose of and schedule for ceftriaxone in people with ALS, and will measure whether the known risks of long-term antibiotic treatment are worth it, he says. The drug is currently approved by the U.S. Food and Drug Administration and used to treat bacterial infections in the brain.

More than a dozen of penicillin's relatives, known as beta-lactam antibiotics, were among protective agents identified by a National Institutes of Health-funded project to screen 1,040 Food and Drug Administration-approved drugs for new uses. The newfound ability of these antibiotics to activate glutamate transporters and to protect nerves, and the drugs' potential therapeutic use in neurological conditions, are covered by patent applications held by Rothstein and Johns Hopkins and licensed to Ruxton Pharmaceuticals Inc.

Of the antibiotics, penicillin protected nerve cells best in laboratory dishes, but ceftriaxone had the best results in mice, probably because it more easily crosses into the brain from the blood, the researchers report.

Rothstein and his colleagues determined that the antibiotics' benefit stems from their newly recognized effect on glutamate's Jekyll-and-Hyde effects. In the brain, glutamate normally excites nerves so that electrical signals can travel from one to the next. But too much of the chemical can overstimulate and kill nerves, a factor in ALS and some other diseases.

In a series of experiments, the researchers discovered that the antibiotics activate the gene encoding glutamate's main transporter in brain cells. Rats and mice that received daily ceftriaxone for up to a week had triple the usual amount of the transporter, known as GLT1, in their brain cells, an effect that lasted for up to three months after treatment.

"Glutamate is just one of many messengers brain cells use to communicate with one another, and this is just one of the transporters that move glutamate," says Rothstein. "So if you can find the right drug, you might be able to specifically affect other transporters, too."

Because ceftriaxone only protects against glutamate damage, just one problem in ALS, it's not surprising that the mice eventually succumbed to weakness and paralysis despite treatment, he says.

"If we can find drugs that protect against other causes of nerve death in ALS, the combination might offer a real therapy, much like using drug combinations to treat cancer," says Rothstein. "The more we know about ALS and other neurological diseases, the better our chances of finding ways to prevent nerve death by all causes."

The research was funded by the National Institute of Neurological Disorders and Stroke, the Muscular Dystrophy Association and the Robert Packard Center for ALS Research at Johns Hopkins. The ALS mice were provided by Project ALS.

Authors of the paper are Rothstein, Sarubhai Patel, Melissa Regan, Christine Haenggeli, Yanhua Huang, Dwight Bergles, Lin Jin, Margaret Dykes Hoberg, Svetlana Vidensky, Dorothy Chung and Shuy Vang Toan, all of Johns Hopkins; Lucie Bruijn of The ALS Association; and Zao-zhong Su, Pankaj Gupta and Paul Fisher of Columbia University Medical Center.

Under a licensing agreement between Ruxton Pharmaceuticals Inc. and The Johns Hopkins University, Rothstein is entitled to a share of royalty received by the University on sales of products described in this study. Rothstein and the University own Ruxton Pharmaceuticals Inc. stock, which is subject to certain restrictions under University policy. Rothstein is a paid consultant to Ruxton Pharmaceuticals Inc. The terms of these arrangements are being managed by The Johns Hopkins University in accordance with its conflict of interest policies.

SOURCE: Johns Hopkins Medicine
Office of Corporate Communications
Media Contact: Joanna Downer
410-614-5105; [email protected]
 

It's all about the money! Didn't that last paragraph say Rothstein has his hand in the money pot and is directly a "consultant" to Ruxton Pharmaceuticals? He actually receives a share of the royalties received on sales of Ruxton products. Sick!

It seems since the beginning of time there is always more money in research than a cure!
 

You guys are wonderful at responding, you really know your stuff.

I appreciate the info and I will pass it along.

Although, that's a lot of info to absorb, I would like to ask more questions! Will do as a new post.

Thanks,

SIL to DAC