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Old 12-09-2011, 06:59 PM #1 (permalink)
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Default Don't discount Lyme

Since we don't know how ALS starts, could it be possible it all begins with Lyme or coinfection? Could these pathogens be the cause of all autoimmune diseases?
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Old 12-10-2011, 05:07 PM #2 (permalink)
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Default Re: Don't discount Lyme

If that were true that Lyme coinfections can "start" ALS, then getting treated aggressively for Lyme should eradicate it... which it doesn't. I really thought I had Lyme, and got treated, to no avail. The problem is that many symptoms of Lyme are similar when they get to the neurological stage (not sure I said that right, but hopefully you get the drift). And I do have the book that is the "bible" that was written on Lyme disease which talks about a few people being "cured" of ALS when treated for Lyme... possible that it was Lyme all along? Very likely.

I do think that my symptoms started with a very strange virus or illness that was never diagnosed... I just never was right after getting through that period of time, and then I got my diagnosis.
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Old 12-10-2011, 06:54 PM #3 (permalink)
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Default Re: Don't discount Lyme

Then explain how there is a 60% higher rate of ALS with Veterans? How is there any connection to ticks? Are you aware that ALS is a disease that is recognized by the VA and medical benefits are given to Vets with ALS?
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Old 12-15-2011, 04:24 PM #4 (permalink)
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Default Re: Don't discount Lyme

we spent a year believing ALS could be Lyme--spent a ton of money, a pik line pumping in the antibiotic and fungal treatment and piles of pills I don't even remember what else. Yet all that happen was my husband got sicker. I won't even go into the other crazy things we also tried--you name it we did it.

Sorry, I think it is mostly a way to separate the desperate from their money.
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Old 12-22-2011, 11:19 PM #5 (permalink)
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Default Re: Don't discount Lyme

Interesting thread. One of the first things (2 yrs ago) that happened to my left hand was some kind of nasty bug bite between my thumg and first finger. It seemed to get infected and took forevr to heal. I've always been sensitive ti bug bites and didn't think anything of it. It definitely wasn't a fiddleback, black widow or tick. About 6 mo later, I noticed the frst little twitch in the exact spot. Not there all the time but very odd. About a yr later, my little finger curled in and it's progressed from there over the last 6 mo or so. The dr said that the symptoms often start after some kind of injury. We ere asking if this could be Lyme dsease. It's so hard to believe you have this thing called ALS.
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Old 12-23-2011, 07:24 AM #6 (permalink)
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Default Re: Don't discount Lyme

Quote:
Originally Posted by NotALS! View Post
Since we don't know how ALS starts, could it be possible it all begins with Lyme or coinfection? Could these pathogens be the cause of all autoimmune diseases?
Unlikely.

Lyme disease is primarily found in temperate regions across the Northern Hemisphere of the globe.

Accordingly, if lyme was the cause then countries in the northern hemisphere would have a higher incidence of ALS.

There is probably not enough statistical data for most tropical areas.

However I could not find any evidence of lyme being present in New Zealand and it is questionable whether there are any confirmed cases in Australia, and the incidence of ALS in both countries is comparable to the North.

So lyme cannot be the common factor.

I'm also of the same opinion as Barbie.
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Old 12-23-2011, 07:43 AM #7 (permalink)
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Default Re: Don't discount Lyme

This has been debated and discussed on this forum forever. I wish it were that simple that ALS could be treated if caught early on and treated for ALS. Lets be honest we all want and hope for an easy answer. Unfortunately when it comes to ALS there are no easy answers.
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Old 01-01-2012, 03:08 PM #8 (permalink)
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Default Re: Don't discount Lyme

My mom has been diagnosed with ALS for over a year. The doctor she's been going to for several months is convinced that she has Lyme disease and that's what caused the ALS. He says that the only way to completely get rid of the lyme is to take cat's claw. He says antibiotics won't help because it has gone to the "cellular level" in her body, but if it flares up, then she can be treated. My sister has been talking to her boyfriend's mom about it because she is a nurse. She says it's never too late to be treated and she should be getting pumped full of antibiotics through an IV. I am so torn. I want my mom to get better. If it is lyme disease, then she should be doing everything she can to get rid of lyme. She is now going to a doctor whose wife has had ALS for 4 years and walks perfectly fine. My mom has to use a walker. I'm so glad I found this forum to be able to talk with and learn from others about something that I know nothing about other than that it is robbing my mother of her life. I would like to hear some success stories about people who have had ALS and were cured. The only ones I have been able to find are the ones where they have been miraculously healed by God. I am trusting in Him that He will cure her, but I'm not a very patient person. I want her cured now, not later.
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Old 01-01-2012, 07:04 PM #9 (permalink)
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Default Re: Don't discount Lyme

dianan, I've never heard of cat's claw, but highly doubt it will be effective.

I got a book about Lyme a couple of years ago (Cure Unknown: Inside the Lyme Epidemic ) , and did look into for myself... I would highly recommend this book. The author's theory about long-term Lyme is basically that the bacterium "hide" in the tissues, and cannot be detected by the standard blood tests (ELISA and Western Blot). However she describes the 3 co-infections and what antibiotics are recommended to take for a period of time to kill the bacterium, and then the blood tests may pick up the "dead" bacteria, since they can no longer "hide". I did try a modified version of what she suggested, with no luck. I went on an antibiotic for a month, and got retested, and no Lyme.

You'd be better off looking for some of the clinical trials that your Mom may qualify for... I think that the Dexpramipexole trial that I'm in, is going to have another trial starting in the spring, with higher doses.

I understand that no one wants to be in our club here, I myself have 3 children that were 11,13 and 16 when I was diagnosed. Please stay on the forum (and introduce your Mom to it) and learn as much as you can to be proactive.
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Old 01-06-2012, 11:49 AM #10 (permalink)
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Default Re: Don't discount Lyme

I'm still struggling with the lyme question and since there's no cure for ALS, I find it easier to cope thinking I have lyme. High dose antibiotics can kill and ALS patient very quickly so I believe slower and smaller dosing is better. I've tried quite a few abx but nothing helped as much as ceftriaxone. My arms and legs are very hard to move now and my breathing can get difficult at times but I still drive and do most of my regular activities.

I don't work since the fatigue is extreme.
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Old 01-06-2012, 12:42 PM #11 (permalink)
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Default Re: Don't discount Lyme

Many countries do not have tick borne diseases such as Lyme. Here for one, so that should answer your question. My husband has diagnosed 3 people with ALS this week, all on one day!
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Old 01-06-2012, 04:45 PM #12 (permalink)
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Default Re: Don't discount Lyme

The reason Lyme gets brought up so much is that it imitates LOTS of other diseases, and is so hard to eradicate (or even find it) in long-term cases! I wish my ALS was rediagnosed as Lyme, I was so sure that it HAD to be; I was in a tick-infested area about 6 months before I got really sick, I never got a diagnosis of what was wrong, and then my neuro symptoms started. But it wasn't and BTW, chronic lyme can be a killer as well.
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Old 01-07-2012, 09:38 AM #13 (permalink)
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Default Re: Don't discount Lyme

ive never heard that large doses of antibiotics can kill a PALS. where are you getting your info? lots of PALS go on large doses of antibiotics when they have lung infections, such as pneumonia...
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Old 01-07-2012, 10:42 AM #14 (permalink)
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Default Re: Don't discount Lyme

Never know. They test for Lyme disease but they usually one do one test for recent exposure, alot of times negative. There is another test for past exposure. Sometimes recent exposure comes back negative and past exposure comes back positive. Another thing I recently heard was not to remove a tick with touching it with a hot match, they say it like vomits. Now they say the best way is to scrap it with a credit card. Makes you wonder?..........
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Old 01-07-2012, 12:43 PM #15 (permalink)
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Default Re: Don't discount Lyme

i think the most important thing to remember when removing a tick is to make it "back" out of your skin. You dont want the head to stay imbedded in there. Not sure I agree with the credit card thing... Ive heard smothering it with vaseline will make it back out or putting salt on it. not sure though.
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