I hope that some of you , many of you will write them to correct them on the false information regarding chronic neurologic lyme on their site. They state the treatment of two weeks of IV antibiotics is sufficient for lyme. They also state that lyme spares the bladder. This is not true. I was diagnosed with autonomic neuropathy secondary to lyme and I have bladder dysfunction.
I do plan on writing them, but I was hoping someone here who is used to doing this all the time could send them information.
I am not going to try to convince them that ALS really is lyme because I do not believe myself that is true in all situations. But I do think their information on chronic neuro lyme is very inaccurate and that is what bothers me greatly!
I certainly won't share this with my new friend with ALS. I was trying to find him something that would convince him to get tested for Lyme. I can't believe an ALS society would be so out of date, and so inaccurate. I was shocked reading this.
Lisa
Posted by 8man12 (Member # 7664) on :
Lisa,show him, that they are doing studies and treating it with the same drug as lyme disease.Here is a ton of articles.
Welcome to LymeNet Lisa*)!*)! !*)!*)*)!*)!*)!*)*!)*!)!*!!!!!!!!!
Posted by Mathias (Member # 5298) on :
Why try to find a cause for a disease that has no cause? That seems to be the philosophy of the ALS associations that I have spoken to.
I was practically dx'ed with ALS and if I didn't start to receive abx treatment I probably would have been dx'ed with it!
No one at the ALS association will entertain my medical history of infections with an ALS presentation. I've contacted them more than once.
You can lead a horse to water but ....
Posted by lou (Member # 81) on :
The ALS researchers seem to be primarily doing work that gives them job security.....goes on forever, in other words. Here is an update from a group that is doing such research, same old same old. And this is the group that was set up by the family of an ALS patient, was described in a TV show as doing "guerilla science." Ha, read this and see if doesn't sound like every other ALS research program. And they have absolutely resisted the idea that any portion of the "ALS" population could respond to lyme treatment.
----------------------------------------------- ALS TDI is committed to providing you with the latest information regarding ALS research, both in our lab and around the world. Below are a few items which we believe you may find of interest. Each description provides a link to more information on the subject available on our website. As always, we welcome your feedback on which topics are of great interest to you. You may email your questions or feedback to us at [email protected].
Looking at ALS, One Cell Type at a Time
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Click here to learn more about Annette's work using LCM From the ALS Forum: Lithium, Cholesterol and Statins
ImageJohn McCarty, Ph.D. provides a quick introduction to these two topics which are currently being heavily discussed on the ALS Forum. A story out of Italy prompted the discussion on lithium as a potential treatment for ALS and presentations at last week's ALS/MND Conference in Toronto, Canada continue to raise interest and questions alike concerning Cholesterol and Statins as potential treatments.
Click here to join the conversation Why don't we have a drug for ALS and how are we going to get one?
Image ALS Research 101 Schedule for 2008 Announced. There is a lot going on in the field of ALS Research today - but what does it mean for patients and their families? What is "the plan" to find a treatment for ALS? How can this information be used when making treatment decisions? What are ALS TDI and the MDA doing to speed up research? The 2.5 hour seminar is designed to begin to provide real answers to these questions. Lead by two members of the ALS TDI team: Sean Scott (President) and John McCarty, Ph.D. (Treatment Investigator), ALS Research 101 is a must attend event for anyone seeking to become better informed about ALS research.
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Posted by CaliforniaLyme (Member # 7136) on :
I agree- the ALS Associations I have tried to talk with are very very set in their paths-
Posted by Keebler (Member # 12673) on :
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Perhaps communication with the support group leaders would work better - perhaps.
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Posted by roro (Member # 13383) on :
I had many symptoms of ALS and one dr at Hopkins suspected it. 3 years before that a neurologist has dx me with "auronomic dysfunction"
I was sent to a different neuro for the dx of ALS. Basically, what I got from it is that my sx were not progressive enough to be ALS.
I had sx of autonomic dysfunction, and muscle weakness, but really didn't fit either dx.
pure autonomic failure I think only affects blood pressure and heart rate, and I had other sx, like bladder, bowel, muscle weakness, etc.
I guess I am lucky they didn't just give me a dx like that, and kept looking. but then they tried to say it was "psychiatric"
most of my sx are getting better with abx. a few are not budging. but I no longer worry about ALS.
I feel sorry for the people with ALS and MS dx's who have no clue their disease might be infectious.
if it were me, I would definitely try abx before "giving up" with a MS or ALS dx. what can it hurt?