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Posts: 130 From: Fayetteville, GA USA Registered: Apr 2001
posted 07 June 2004 11:47
Has anyone ever received a diagnosis of ALS (Lou Gehirg's Disease) and it turn out to be Lymes? I know I've seen some info on this, but this is not a good day to go digging through the archives. I would appreciate your help.
His 'ALS' may be Lyme diseaseBy Dale Heberlig, April 14, 2004 Ken Goshorn spent nearly four years in a battle against the crippling effects of a mysterious illness - sometimes crawling on his hands and knees to get around his home - before he began to suspect his problems might stem from chronic Lyme disease.Felled in the fall of 1999 by a general physical weakening and failing muscle coordination, Goshorn, 57, first sought treatment from a chiropractor, then his family doctor and, finally, specialists at Johns Hopkins Hospital, where he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.He says he was told there was no hope for improvement.Mild signs of recoveryNow, eight months after visiting a western Pennsylvania doctor and embarking on a treatment of large doses of antibiotics, Goshorn says he sees mild signs of recovery he was told never to expect.Goshorn, a former supervisor in Southampton Township near Shippensburg, says doctors at Johns Hopkins told him there was no hope of improvement from symptoms of ALS.However, he and his physical therapist at Shippensburg Health Services, a Summit Health facility, say he has made some modest strides in recent weeks.Goshorn says he took a "kill-me-or-cure-me approach" after his new doctor gave him the go-ahead for physical rehabilitation therapy. He says stressful exercise aggravates the symptoms of ALS patients.Therapist Mark Maynard says in two months of treating Goshorn's symptoms, he has seen improvements that are "atypical" of ALS expectations."With ALS, patients go downhill with overwork, but Ken's stronger, his gait is improved," Maynard says. "He was walking on his toes (to maintain his balance), now he's back on the balls of his feet."Mission from GodA reverent man with strong religious convictions, Goshorn believes he's been given a mission by God to do everything he can to educate others who suffer from similar symptoms.Dr. J, Goshorn's physician in Hermitage, Mercer County, is unwilling to talk about Goshorn's specific circumstances or the particulars of Lyme disease, but Goshorn has no such reservations."I've met so many people in this area with symptoms like mine, maybe a dozen people I've run into," Goshorn says. "The more I learn about it, the scarier it gets, but I try to make some fun out of all this, because God told me this is a challenge to life."If I die, that's OK, but if I wake up in the morning and see the sun shining, it means God has someone else for me to talk to."Word of mouthGoshorn learned of his Mercer County doctor through word of mouth, from a friend he calls Cindy.He says the treatment regimen prescribed by Dr. Joseph calls for heavy doses of antibiotics for an extended period - much longer than 3-4 weeks described on the website of the Center for Disease Control.According to Goshorn, Cindy has been on the antibiotic regimen for two years. "It's a long, slow process," he says. "She's getting better."His friend's success motivated him."I wouldn't have gone out there if just anyone told me, but I saw the results Cindy got," Goshorn says of his friend.He says Cindy also was diagnosed with ALS and was on a pronounced downward track before embarking on the heavy antibiotic treatment recommended as an alternative treatment by some doctors for the treatment of Lyme disease.Goshorn worries that people won't find out about alternative treatments for what is diagnosed as ALS."Many doctors are so busy with their regular work that they just don't know about the alternatives," he says. "People have to find out for themselves and insist on other options."Often mistaken for ALSGoshorn says Internet research he's done recently indicates Lyme disease is often mistaken for ALS or other afflictions. The disease is difficult to diagnose, he says, because spirochetes, the slender spiral bacteria of Lyme disease, migrate to organs from the bloodstream and can't always be detected by a blood test.He was diagnosed with Lyme disease on the basis of a Western Blot test that indicates the presence of the bacteria associated with the ailment. Goshorn says even the Western blot test is only about 60 percent accurate.Goshorn's symptoms became obvious to him in October 1999, although in hindsight he thinks the signs were there much earlier."I've pulled hundreds of ticks off my body in the years I worked in the woods and fields as an excavator," he recounts. "And, when I think back on it, I remember tripping or stumbling many times. Those could have been early signs of muscle control problems."Lyme disease is transmitted by deer ticks infected by the blood of mammals the ticks have fed upon. As many as 23,000 cases were reported in the United States in 2002.Disease underreportedAccording to the CDC, the disease is grossly underreported. Twelve states account for 90 percent of the reported cases, with the 3,959 Pennsylvania cases ranking behind only Connecticut - where the disease was first identified in the town of Lyme - and New York.The onset of Lyme disease is usually marked by the appearance of a red "bull's eye" rash at the site of the tick bite within 7-14 days. According to the CDC, the disease can manifest later as chronic symptoms without the appearance of the bull's eye.The best prevention is to avoid ticks. Proper outdoor clothing and the use an insect repellent containing DEET is recommended. Unusual illness might be Lyme disease By Dale Heberlig, April 14, 2004 Ken Goshorn spent nearly four years in a battle against the crippling effects of a mysterious illness — sometimes crawling on his hands and knees to get around his home — before he began to suspect his problems might be stemming from chronic Lyme disease. Felled in the fall of 1999 by a general physical weakening and failing muscle coordination, Goshorn, 57, first sought treatment from a chiropractor, then his family doctor and, finally, specialists at Johns Hopkins Hospital where he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. He says he was told there was no hope for improvement. Mild signs of recovery Now, eight months after visiting a western Pennsylvania doctor and embarking on a treatment of large doses of antibiotics, Goshorn says he sees mild signs of recovery he was told never to expect. Goshorn, a former supervisor in Southampton Township, Cumberland County, says doctors at Johns Hopkins told him there was no hope of improvement from symptoms of ALS. However, he and his physical therapist at Shippensburg Health Services, a Summit Health facility, say he has made some modest strides in recent weeks. Goshorn says he took a "kill me or cure me approach" after his new doctor gave him the go-ahead for physical rehabilitation therapy. He says stressful exercise aggravates the symptoms of ALS patients. Therapist Mark Maynard says in two months of treating Goshorn's symptoms, he has seen improvements that are "atypical" of ALS expectations. "With ALS, patients go downhill with overwork, but Ken's stronger, his gait is improved," Maynard says. "He was walking on his toes (to maintain his balance), now he's back on the balls of his feet." Mission from God A reverent man with strong religious convictions, Goshorn believes he's been given a mission by God to do everything he can to educate others who suffer from similar symptoms. Dr. J, Goshorn's physician in Hermitage, Mercer County, is unwilling to talk about Goshorn's specific circumstances or the particulars of Lyme disease, but Goshorn has no such reservations. "I've met so many people in this area with symptoms like mine, maybe a dozen people I've run into," Goshorn says. "The more I learn about it, the scarier it gets, but I try to make some fun out of all this, because God told me this is a challenge to life. If I die, that's OK, but if I wake up in the morning and see the sun shining, it means God has someone else for me to talk to." Word of mouth Goshorn learned of his Mercer County doctor through word of mouth, from a friend he calls Cindy. He says the treatment regimen prescribed by Dr. J calls for heavy doses of antibiotics for an extended period — much longer than 3-4 weeks described on the website of the Center for Disease Control. According to Goshorn, Cindy has been on the antibiotic regimen for two years. "It's a long, slow process," he says. "She's getting better." His friend's success motivated him. "I wouldn't have gone out there if just anyone told me, but I saw the results Cindy got," Goshorn says of his friend. He says Cindy was also diagnosed with ALS and was on a pronounced downward track before embarking on the heavy antibiotic treatment recommended as an alternative treatment by some doctors for the treatment of Lyme disease. Goshorn worries that people won't find out about alternative treatments for what is diagnosed as ALS. "Many doctors are so busy with their regular work that they just don't know about the alternatives," he says. "People have to find out for themselves and insist on other options." Often mistaken for ALS Goshorn says Internet research he's done recently indicates Lyme disease is often mistaken for ALS or other afflictions. The disease is difficult to diagnose, he says, because spirochetes, the slender spiral bacteria of Lyme disease, migrate to organs from the bloodstream and can't always be detected by a blood test. He was diagnosed with Lyme disease on the basis of a Western Blot test that indicates the presence of the bacteria associated with the ailment. Goshorn says even the Western blot test is only about 60 percent accurate. Goshorn's symptoms became obvious to him in October 1999, although in hindsight he thinks the signs were there much earlier. "I've pulled hundreds of ticks off my body in the years I worked in the woods and fields as an excavator," he recounts. "And, when I think back on it, I remember tripping or stumbling many times. Those could have been early signs of muscle control problems." Lyme disease is transmitted by deer ticks infected by the blood of mammals the ticks have fed upon. As many as 23,000 cases were reported in the United States in 2002. Disease underreported According to the CDC, the disease is grossly underreported. Twelve states account for 90 percent of the reported cases, with the 3,959 Pennsylvania cases ranking behind only Connecticut — where the disease was first identified in the town of Lyme — and New York. The onset of Lyme disease is usually marked by the appearance of a red "bull's eye" rash at the site of the tick bite within 7-14 days. According to the CDC, the disease can manifest later as chronic symptoms without the appearance of the bull's eye. The best prevention is to avoid ticks. Proper outdoor clothing and the use an insect repellent containing DEET is recommended.
WELCOME To LYMENET
Here’s more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Posts: 130 From: Fayetteville, GA USA Registered: Apr 2001
posted 07 June 2004 14:50
Thank you so much for the info. I have chronic lymes and have been battling this for four years (four years into it before it was diagnosed). This is for a friend that was told they have ALS - I just hate it when the doctors get stuck on the one diagnosis and won't even consider the possibility of another. I try not to label everything as Lymes but definately want people to at least consider the possibility, especially with a diagnosis of ALS which is fatal. Any other info you have would be appreciated. Thanks again.
Posts: 220 From: Charlotte Hall, MD Registered: Jun 2003
posted 07 June 2004 21:02
I attended Dr. G. B.'s (PA) seminar in Dunkirk, Maryland on Saturday and he told us that he has 64 ALS patients that are responding to Lyme treatment. He believes ALS is Lyme disease.
He went on to tell us that one of his patients is the gentleman from the Raiders and that Mr. Smith will be making a public announcement very soon. Stacey
posted 07 June 2004 21:51
Hagen -best wishes to your friend. Hopefully your friend will try treatment for Lyme. Also, there are several stories in Karen Vendrhoof's book, one specifically mentions ALS, later diagnosed as Lyme others talk about people with ALS, MS symptoms - all recovering.
Stacey- WOW! This is big news. If Smith comes out and makes an announcement about Lyme it will help so many people including us! I sent a note a few weeks ago to a sportswriter to get a certain pro-golfer on Lyme treatment but I haven't heard anything. This would make long term treatment more acceptable and I bet more money would be flowing in for research. Thank you for the information.
posted 08 June 2004 18:29
Unfortunately, we dedicated our Lyme Jam this year to a man that was incorrectly diagnosed with ALS when it was lyme all the time. He started treatment on the lyme but died. A major hospital in the MD area had diagnosed him with ALS. He was finally taken to a doc in the north and started treatment.
Get yourself prompt treatment but get the Bowen test first so you will know what you are dealing with as far as coinfections.
posted 28 February 2005 22:01
There will be a benefit brunch this Sunday (March 6)in Bethesda, Maryland for someone who has been recently diagnosed with ALS. I am trying to get information to help this person.
Does anyone have any new information on the effects of antibiotic treatment for ALS?
Posts: 521 From: Los Angeles, CA, USA Registered: Jun 2003
posted 28 February 2005 23:30
This is the real problem lately I am having with disease definition. In reality most disease are just a group of symptoms, in some cases with supporting markers.
We talk about a number of them here, MS, Lupus, ALS, Parkinson's, Alzheimer's as well as Psychological disorders and ADD/ADHD. I have even seen a newer term Neuroimmune Dysfunction Syndrom, in which PDD and Autism as well as the above mentioned diseases are being associated with an immune disorder.
In the beginning, I was down the path that alot of people suffering from all of these diseases were somehow associated with Lyme. But lately I am not so sure. I do think what we all have in common are over-reactive immune systems that have been caused by multiple infecteous agents both bacterial and viral, some of which are of the stealth varity.
In addition, exposure to toxins and other environmental factors are putting stress on all of our immune systems. In short our immune systems are fighting a war and it is having a hard time figuring out what is good and what is bad so it is killing everything.
Most doctors know very little about the immune system and the importance of nutritional health. Many on here have quoted very good articles talking about these topics in general. The problem is that the specialist are so focused that I think at times they do not think of the big picture.
What I do know is that one of mine and my families infecteuos agents is Lyme, I also know that co-infections are involved. My son's start of major Lyme systems started after an episode of H-Pylori, mine started in full force after an episode of Epstein Bar.
Who knows maybe the vaccines we got as a child set up our immune systems for a big fall. Alot of us are really in the first few generations of vaccine recipents. Were genetics alterd because of their use. I understand there is the mercury controversy but who really knows. It is hard to say.
Back to my point system /pathway failures cause symptoms. An over-reactive immune system can cause system/pathway failures. It would make perfect sense that antibiotics would help a number of these people whether they have Lyme or some other infection.
I really believe that our hope for a healthier future lies in the research that is going on in rebalancing of the immune system. While I know Lyme is a very hard bacteria to destroy, it probably will take more than its destruction to restore us to health.
It is important that when dealing with others that suffer from other diagnosis, that we don't jump to quickly on Lyme. It should definitly be looked at along with a host of other possible infections.
With that said ALS could most probably be caused by Lyme disease and it should be ruled out.
[This message has been edited by hwlatin (edited 28 February 2005).]
posted 01 March 2005 01:28
The article below talks about treating ALS with abx. The theory here is the abx don't attack a pathogen (they don't think ALS is an infection, and you may think they're wrong), but help remove excess glutamate from motor neurons.
Excerpt: "They are not being used as antibiotics," said Bruijn. "ALS is by no means a bacterial infection." Instead, the drugs turned on the GLT1 gene. That, in turn, increased the number of transporters available to remove the neurotransmitter glutamate from the nerves. "This is a transporter that is key in removing excess glutamate from the surrounds of the motor neurons," Bruijn explained. "This has therapeutic implications because we know glutamate is a problem. Too much of it has serious consequences, not only in ALS but also in other neurodegenerative diseases."
> << Title: Antibiotics Eyed to Treat Nerve Disorders > URL: http://www.lex18.com/Global/story.asp?S=2770246 > Time: 2005-01-05 18:14:08 > News site: > Description: WEDNESDAY, Jan. 5 (HealthDayNews) -- A group of antibiotics that > includes penicillin is showing potential for preventing the nerve damage > endemic in Lou Gehrig's disease, and could help other neurological disorders, a > new study finds. > > While the effects have so far been seen only in mice, the authors already > have funding to start a clinical trial later this year, said study co-author > Lucie Bruijn, science director and vice president of the ALS Association. The > report appears as a research letter in the Jan. 6 issue of Nature. > > ALS is the acronym for amyotrophic lateral sclerosis, popularly known as Lou > Gehrig's disease. It causes progressive weakness and paralysis, and is usually > fatal within three to five years of diagnosis. > > Although the study looked specifically at ALS, the implications may be > carried much further to other disorders that are marked by a loss of nerve function, > including dementia, stroke and epilepsy.
posted 01 March 2005 06:58
Lou Gehrig's disease is being treated by some patients with IV Rocephin. Scientists have found a particular gene in 20% of people who contract ALS, but the cause of the rest of the cases is still unknown, although "environmental causes" and multiple triggers are suspected.
**** [from Reader's Digest, March 2005]
"On the way home from Canada, Dee [Chiplock, who has had symptoms of ALS since August 2003] thought about the battles she wanted to wage before she died. She wanted to work for a cure for ALS, but she also wanted to improve conditions for people suffering from all terminal diseases. 'I wanted to make my life and death mean something,' she says.
"So for the last eight months, Dee has jumped ahead of traditional medicine and begun taking ceftriaxone [Rocephin], an antibiotic designed for short-term use in patients with serious infections such as meningitis and pneumonia. It has shown promise in slowing ALS in animals, but has yet to be tested on humans. Clinical trials will begin this spring. 'I will be dead by then,' Dee says matter-of-factly. Though the drug is not expected to offer a cure, its potential to prolong life is why Dee has agreed to take it 'off label.'
"Twice daily, she receives a 30-minute infusion through a line permanently inserted in a vein in her arm.... She must pay a whopping $9,300 per month for the drug, as neither her insurance company nor the drug manufacturer will cover off-label medications."
****
Dee can still talk, although she can no longer walk, has lost her cough reflex, and has some breathing impairment. She felt that if she had started the Rocephin sooner, she might still have been able to walk and write. It has been 1 1/2 years since onset. None of her relatives that came down with ALS lived past 13 months.
Your friend may want to consider antibiotic treatment even WITHOUT a Lyme diagnosis, in an effort to prolong her life. If she gets HEALED, so much the better!
posted 01 March 2005 23:00
hello...yes my husband was dx with als in august of this year...after researching we found a dr to test him for lyme after recieing one negative test through i genes in ca which turned out to be highly positive for lyme so he is being treated so far for 4 months of anitbiotcs so time will tell....i also got tested and came up positive as well with klyme although my symptoms are not als like....
quote:Originally posted by Hagen: Has anyone ever received a diagnosis of ALS (Lou Gehirg's Disease) and it turn out to be Lymes? I know I've seen some info on this, but this is not a good day to go digging through the archives. I would appreciate your help.
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posted 07 June 2004 11:47
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