I have 5 cases of ALS in my county in Ohio. Sounds kind of strange doesn't it? This is in about a 2 yr. spand. I know of 2 doctors in PA, does anyone else know of any dr. that may be closer by to help these people. Any help or info would be greatly appreciated. Barb
Posted by treepatrol (Member # 4117) on :
yes i do but i need email add ress
Posted by bg2711 (Member # 1865) on :
HI thanks for your reply. My email address is [email protected] thanks
Posted by bg2711 (Member # 1865) on :
up
Posted by treepatrol (Member # 4117) on :
emailed
Posted by Sue vG (Member # 3143) on :
Hi Barb,
I don't have an answer, just wanted to say thank you for trying to help those poor folks.
Best wishes,
Sue
Posted by Lymetoo (Member # 743) on :
I sure wish there was a way we can get the word out on this possible connection! So many are suffering!
Thanks Barb! Posted by dmc (Member # 5102) on :
there is a dvd out of the lyme conference of may 7,2005 in farmingtron, CT. The first dvd has when Whitaker, and Lideman, present how they believe ALS is later stage lyme disease.
Also the is a contact person, at the website, "Mike" for those diagnosed ALS and needing lyme info.
Posted by bg2711 (Member # 1865) on :
thanks everyone. We certainly need help around here. I appreciate all ideas and info. This is very distressing to see so many in Ohio having this problem and everyone is oblivious about the epidemic. Still can't figure out how these ducks in a small town can't piece it together. Barb
Posted by paulscha (Member # 6334) on :
I have both diagnoses, and the ALS diagnoses was made by a 'Lyme-literate' neurologist who accepted that I had late-stage Lyme disease.
I've seen this particular neurologist recommended to Lyme patients on other Lyme message boards.
Like all phsyicians, this neurologist is influenced by the official policy of denial that minimizes both the scope of the Lyme pandemic and the serious damage the disease can inflict when treatment is delayed or truncated to fit insurance company guidelines.
Still, I would have to describe this neuro as comparatively sympathetic to Lyme patients, a good deal more so than the norm.
Having practiced outside the US, and been exposed to a more realistic assessment of Lyme from researchers and clinicians in other parts of the world, she knows that the attitude toward the disease is particularly backwards here.
So I would say that in her case it wasn't just bias, but also the lack of research demonstrating that the particular combination of upper and lower motor neuron failure seen in ALS is both traceable to Lyme and susceptible to antibiotic treatment.
More such research exists, perhaps, than she is aware of, but I have made a kind of mission out of trying to connect the dots with published data, and it's not an easy task.
I think it's grand that there's a DVD, but it would be nice if there were transcripts of the relevant presentations made available on the internet at no cost. To the extent that we have information amounting to a strong case that ALS can BOTH be caused by Lyme and remedied by anti-infective treatment, we need that information to be broadly available to patients who are dx'd with ALS to share with their physicians.
If you've read something that you think is helpful in this regard, and can provide a link, please either post it here or email me at [email protected]. I am in the process of putting together a packet for just this purpose but could definitely use more material to work with.
Thanks so much,
Paul
Posted by janeymae (Member # 7018) on :
I know this is a stupid question, but what does ALS stand for. My brain is not working today, thanks.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by janeymae: I know this is a stupid question, but what does ALS stand for. My brain is not working today, thanks.
Amyotrophic Lateral Sclerosis, Lou Gehrigs Disease.
Posted by seibertneurolyme (Member # 6416) on :
Paul,
Posting this here in case you have not seen these references to ALS/Lyme. A couple of articles on this topic can be found at http://www.waisbrenclinic.com
Bea Seibert
Posted by lou (Member # 81) on :
Apparently some people with ALS diagnosis respond to lyme treatment, and some do not. So, maybe there is more than one cause.
Sarah has recently been posting interesting abstracts, mostly Russian, in which tick borne encephalitis (caused by a virus) and lyme are said to be co-infections. And ALS symptoms were connected with the virus. A virus in the same group has been found in Ixodes ticks in the U.S., meaning that some of us may be getting it too.
The overlap of symptoms causes so much confusion in these tick-borne diseases.
found this article on the illads website: aalso their "basic info" pages #15 mentions lyme mimicaing ALS. Couldn't find any "medical abstracts" regarding als/lyme.
ILADS WELCOMES PHYSICIAN RECOVERING FROM ALS DOCTOR'S CASE SUPPORTS THEORY LYME DISEASE MAY BE THE CAUSE OF ALS Bethesda MD September 2, 2004 - The International Lyme and Associated Diseases Society (ILADS) strengthened its impressive membership today with the addition of Dr. D.M. of Colorado Springs, who joined ILADS 15 months after being diagnosed with Amyotrophic Lateral Sclerosis (ALS). In April of 2003, Dr. M. began suffering weakness and pain in his muscles. Dr. M. soon lost much of his mobility. His condition worsened forcing him to retire from the medical practice he loves.
After six frustrating months with hope fading, Dr. M. discovered the work of Dr. B. of Pennsylvania. Dr. B., who is a member of ILADS, suggested a link between ALS and Lyme disease. IGeneX Reference Laboratory of Palo Alto then confirmed Lyme bacteria in Dr. M. Dr. M. then sought out a local ILADS physician who started Lyme disease treatment based on the recommendations of Dr. B. The results were dramatic.
"Before I found Lyme "literate" professionals, I could only function at a level of about 20 percent," says Dr. M. "But now that I'm in expert hands, I am up to 75 percent of full function and I hope to return to work soon as a physician, helping others with Chronic Lyme Disease." An internist, and Past President of the Colorado Medical Society, he is committed to giving others opportunities that have been given to him.
The Centers for Disease Controls says that Lyme disease may be under-reported by as much as ten-fold. This means as many as a quarter of a million Americans may contract Lyme disease each year, yet most of them are unaware of it. ILADS will hold its annual meeting in October of this year in Rye, New York.
ILADS president, Dr. P, says, "Dr. M. is an example of the many physicians and medical experts we encourage to join ILADS so we can continue to raise awareness and make vital advances in the world-wide fight against Lyme disease."
For more information about Lyme disease go to www.ilads.org CONTACT : Barbara
[ 08. September 2005, 01:09 PM: Message edited by: dmc ]
Posted by dmc (Member # 5102) on :
whoops, didn't edit article and Drs. name are in it. Don't know how to edit...didn't find edit button. I'm sorry I broke the rule.
Posted by dmc (Member # 5102) on :
whoops, didn't edit article and Drs. name are in it. Don't know how to edit...didn't find edit button. I'm sorry I broke the rule.
Posted by bg2711 (Member # 1865) on :
Hi everyone thanks for your help. I am forwarding all info on to my friends.
Thanks DMC, great article! I really appreciate everyones help. I hope these people can get treated and make some strides in getting their lives back. Barb
Posted by paulscha (Member # 6334) on :
Thanks very much, Bea and Lou and Barb and all!
Bea, I had found that doctor's site, was very impressed by the volume of research citations there (imagine...doctors who read something other than pharma company brochures).
Lou, I had not seen the links to TBE, which are fascinating. Thanks much.
You guys are the best.
Paul S.
Posted by ALSLYME (Member # 6721) on :
i have read the ilads story on dr m, and i don't think dr b, in pa, was the "treating" physician. i believe it was dr h, in texas, that actually prescribed the abx, but i could be wrong.
i believe the abx regimen that dr h prescribed was different, and much higher doses, compared to what dr b in pa was known for giving his "als-lyme" patients. (in my case anyway, i do not know about others)
i read dr m was on 4 g rocephin/day iv, for at least a year - not positive on exactly how long. i have done a lot of research on als-lyme and the only cases i have found sucessful were long term iv, at high doses & long durations, and not always rocephin, sometimes claforan, and above all the correct combo treatments for multiple coinfections.
alot of the llmds will not prescribe what is actually needed, even the ones that "claim" to be als-lyme experts.
not all llmd's who are "pioneers" in als-lyme cases are necessarily the best. hell, allen steer was a pioneer in lyme also, afterall.
some llmd's may get lucky with 1 patient, or maybe even a few, but what works for one, doesn't always work for another!
what i will suggest, is if you have, or think you have als-lyme, do ALOT of homework before you choose an llmd.
make sure your llmd tests and treats for Borreliosis, Bart, Babs, Ehrlichiosis, and H-Pylori (remember this one), and most of all GOOD LUCK!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by ALSLYME: i have read the ilads story on dr m, and i don't think dr b, in pa, was the "treating" physician. i believe it was dr h, in texas, that actually prescribed the abx, but i could be wrong.
That's what I thought too.
Great info, everybody...I'm saving this link.
Posted by Mathias (Member # 5298) on :
ALS symptoms can also be caused by CNS mycoplasma infections. Get tested for that too.
Posted by bg2711 (Member # 1865) on :
Mathias, thank you for the info. Barb
Posted by seibertneurolyme (Member # 6416) on :
Here is one more resource. It lists Lyme disease, post-polio syndrome, HIV and neurosyphilis as infectious causes of ALS. Article gives lots of info on other possible causes including glutamate toxicity and mercury poisoning. Includes suggestions for nutritional supplements and explains why each might be of benefit.
http://www.lef.org/protocols/ Select Health Concern -- click on Amyotrophic Lateral Sclerosis. To view the entire article click on the printer icon in the brown box.
The info under Myasthenia Gravis might also be useful.
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