Topic: NEED research articles on Lou Gerigs disease/Lyme
bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
Hi everyone,
There is a local man here that was diagnosed with Lou Gerig's disease. Does anyone have any articles that point to Lyme, so I could send to the family.
I am so busy with operation green santa, I don't have the time to research for the articles, but think this man needs to explore more options. ' If anyone can send me some links that i could print out to send him, I would appreciate it very much. Barb
posted
Barb, here is from the 300 other medical conditions that lyme mimics that I believe Shelley originally posted and this link is only ALS: http://www.geocities.com/lymeart3/als-links.html
Hope this helps; many links on here relating back to Natl. Institute of Health's citations. Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey President of the Operation Green Santa.. Top dog.. Head of the Fun Department... Sweetie Pie Galore!
There are quite a few things I have in my files... too many to post here I'm afraid.
May I suggest this man contact Dr. Gregory Bach in Colemar, PA.
He has over 55 patients he is working with at the present time... who all were misdiagnosed with ALS (Lou Gerhigs).. and they really had Lyme and co-infections.
Dr. Bach has had a terrific success rate working with these patients.. and I have been fortunate enough to see some of his patients and see how wonderful they are doing once tested properly and treated properly. It is AMAZING!
No.. it is MORE than amazing!!!
Keep in mind.. Lou Gehrig was a base ball player.. who.. back before artificial turf.. played ball in high grassy fields.
He also.. from what I understand.. had an "off-season" home where he stayed ..
In LYME, CT!!!
He also lived on Long Island.. a hot bed for Lyme and co-infections.
I do hope this gentleman you know will NOT stop pursuing a diagnosis and will get properly tested.. not by some flea bag idiot place.. but by someone who KNOWS what they are doing. I also hope he gets the chance to be properly treated too.
Unfortunately.. not many doctors are relating ALS to Lyme.. but they sure should be.
The IDIOTS at Hopkins.. supposedly the "best" in the world (yeah right)... are missing these folks all too often.. then refusing to admit they were wrong when the patients tests come back positive for Lyme and co-infections.. and the patients get better with proper treatment.
Another reason to stay away from Hopkins!
But.. that is only MY opinion.... from what I have seen personally.
If I remember right.. a patient in PA ... who was misdiagnosed with ALS or Parkinson's was planning on sueing Hopkins for the misdiagnosis.
Anyhow.. the point is.. if these dopes are missing it.. then denying it... we need to really make an effort to help these folks get the RIGHT help.
If I had that diagnoses.. I would do all I could to properly check it out.
If this gentleman you know would like to email me for more information.. please share my address with him.
I will GLADLY help.
I already lost a relative to Lyme who was told she had ALS... but it was too late when we found out. I don't want this to happen again.. to anyone.
And THANKS Santa for taking time to help so many folks.
bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
You guys are great, thanks so much. Thanks Betty. Tincup, Dr. Bach was the first one that came to my mind too. Does anyone have his phone number so I can give it to this man? Please e-mail me with it. I have him on my doctor list but no street address or phone. Thanks so much
Also, check out //www.dorway.com/lymedis.txt Lyme Disease Is Sexually Transmitted, Produces AutoImmune Self Destruction Which Is Reactivated by Aspartame. by James Bowen, M.D.
Maggie
[This message has been edited by Magdalena (edited 29 November 2004).]
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
The West Nile Virus has certainly grabbed its fair share of the headlines. One local health expert says Lyme Disease should be of greater concern to Texas residents. A cell phone rings, and you answer it. That simple task becomes painfully difficult for Lyman Jones who's recovering from Lyme Disease. "I would have to get the cell phone that's hard to flip," Jones said. Jones was an instructor for the National Outdoor Leadership School when he first got sick three years ago. He was initially diagnosed with ALS or Lou Gerhig's Disease. "For about 18 months, I thought I had ALS, and I thought I was going to have a slow, crippling decline and I would have to say goodbye to everybody, but now it's like having a new lease on life," Jones said. Five months ago, Jones met Family Nurse Practitioner Ginger Savely. "He was an outdoorsy guy. He led expeditions and hikes through the wilderness. Certainly had a lot of exposure potential so certainly someone like that the red flag goes up on my mind," Lyme Disease expert Ginger Savely said. Savely is considered one of the top Lyme Disease experts in the country. She says while the West Nile Virus gets most of media exposure, Lyme Disease should get the lion's share of the attention. That's because the disease, which is caused by Borellia bacteria and transmitted through deer ticks and now possibly even mosquitoes and horseflies, is more likely to affect a lot more people than West Nile. "It tricks you. It's called the new great imitator," Savely said. Savely says often Lyme Disease patients are incorrectly diagnosed with everything from Lupus to MS to Parkinson's to ALS. All usually sporting a rash and complaining of a stiff neck, head and body aches. "The symptoms are so flu-like which is confusing, but we don't normally see a lot of flu in the summer so you have to be suspicious if it's the spring or the summer and you're showing flu like symptoms," Savely said. Five months ago, Jones could barely walk and talk. Even though he still faces perhaps two years of treatment, he's thankful. "I would never think I would say hooray I have Lyme disease, but when you go from ALS to Lyme, it's really wonderful," Jones said. Savely has been named the Texas Nurse Practitioner of the Year for her work with hundreds of Lyme Disease patients from all over the country. http://kxan.com/Global/story.asp?S=2253584&nav=0s3cQWu0
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. Joseph Joseph, 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.
Theres a couple.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
Thank you all very much for your replies. I got the Dr. name to the gentleman that I heard about in our area.
I gave him my phone number and told him I could give him as much info as he needed, and that maybe he might want to look to one of these Dr. to help him.
Keep your fingers crossed, I just hate to see him go down the ALS road when I know my area is endemic for Lyme. Blessings to you all for your help!! Barb
posted
Here is a short article on a doctor diagnosed with ALS who later found he had Lyme....I believe he was seeing Bach also. http://www.ilads.org/rel_martz.html Posts: 489 | From CO | Registered: Feb 2003
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Sue vG
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Member # 3143
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