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Old 08-08-2010, 07:03 AM #46 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

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Originally Posted by Phil M View Post
, but what I did notice was my als symptoms improved drastically! I was walking great, and felt stronger. It was not my imagination. That being said, I did not notice much change in my bulbar symptoms. All I know is...it definately had some effect on my symptoms! I told my GP, and my Neurologist assistant. They must think I'm nuts because I did not hear anything back from them. I have a appt in a few weeks with my Neurologist, and I will be bringing it up. I wish they would atleast try the antibiotics on someone else to see how it effects them.
I talked my GP into prescribing me the antibiotics again. I am going to pay close attention, and see if I gain strength again like the last time. I'm kind of excited, considering how good I felt while I was taking them a few weeks ago! All I know is there was some kind of connection when I took them, and I can't just ignore, and forget it. We will see what happens!
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Old 08-08-2010, 01:54 PM #47 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Phil, I'm excited for you, and soooo hope the antibiotics have a truly positive effect. I believe you'd said earlier that in the past you'd had a lot of deer tick bites, so had reason to hope that Lyme was your problem. I also was surprised not to test positive for Lyme, but trust that it's now a settled thing in my own case. Beat those odds, Phil!
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Old 08-08-2010, 04:18 PM #48 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Thanks AC, I'm just considering it a experiment. I have classic ALS symptoms, and my Neurologist insist I have ALS. Theres just a couple things I find ironic. Not only all the tick bites, but I got 2 tick bites that swelled up, and turned red exactly 2 weeks before I had my first ALS symptoms in July 07. And in that 2 weeks, I had a nasty fever out of the blue. Not sure what caused it. And the fact that the antibiotics made me feel stronger. I just can't ignore it. Even if there is only a half of a percent that I might not have ALS. I am gonna try! Its all up to God with what happens. I would consider it a miracle
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Old 08-08-2010, 04:24 PM #49 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Praying for that miracle! I see why you have hope.
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Old 08-08-2010, 04:28 PM #50 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Good luck! I hope you will let us know how the course of antibiotics makes you feel and if you feel your condition improved any.
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Old 08-08-2010, 04:36 PM #51 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Good luck Phil, your ALS story is so parallel to mine. I also had my first symptoms in July 2007 but I never had any tick bites that I can recall. I have been an outdoorsy type for the past 30 years but Lyme is not common here so I doubt if that is my problem.

Anyway, let us know how it works. We'll be waiting to hear.
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Old 08-08-2010, 04:43 PM #52 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

We live in Lymeville. Similar to Barry's map of all of us, our Vet had a Lyme map, and don'tcha know it was centered smack dab here. One of our dogs died of Lyme... Phil has had Lyme. I just knew that would be my diagnosis. (for PhilM, I'm referring to my husband, Phil.)
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Old 08-08-2010, 07:36 PM #53 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

We were hoping for Lyme disease at one time, too. We've found deer ticks on our dogs several times, too. My husband was put on a course of prednisone in late December and had clear strengthening. He had a series of IVIg treatments in February and had an amazing response. Unfortunately, the IVIg treatment series in March produced no results, and the IVIg treatment series in April actually harmed him. We will be anxious to hear how you do on the antibiotic treatment, too. We are going to try and get our doctor to let my husband do another course of streroids and see if it produces any positive effects.
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Old 08-08-2010, 09:29 PM #54 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

The drug Ceftriaxone, which is a phase 3 research for ALS is a heavy duty antibiotic. It has shown some promise(see Serenade's posts) We were also checked for Lyme, and a gazillion other things. HUGS Lori
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Old 08-09-2010, 09:16 AM #55 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Prednisone....To whoever mentioned prednisone...I was prescribed that too at the same time as the antibiotics, so I felt certain that was why I seemed to be getting around so much better. Well..the antibiotics ran out, and I still have, and take prednisone. My extra strength declined after the antibiotics were gone. Although, I do think prednisone is a wonderful medication! It gives a little boost of energy, helps pain, appetite etc. I take one in the morning with my coffee.

Barry...Lyme is more prevalent in Canada than the stats indicate. From what I gather.. The disease originates in the deer. Insects get it from the deer, and graciously transports it to humans. If someone knows otherwise. Feel free to correct me. If there are deer, and blood sucking insects, the chance of lyme is there, IMHO

There are a number of people out there that think ALS is Lyme that has been left untreated for too long. Who knows..When I got my final DX. I tried to tell the Neurologist my tick story. He didn't want to hear any of it. in fact he interrupted, and didn't even let me finish talking. Nobody seems to know a darn thing about this disease, so I think all avenues should remain open. The cause is probably something right under our noses!
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Old 08-09-2010, 09:38 AM #56 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

In the disease transportation, I've read that mice are also involved in bringing us the Lyme. Apparently they act as a go-between of sorts between deer and humans. I've also read that many kind of ticks--not only deer ticks, but dog ticks--also carry Lyme.
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Old 08-09-2010, 11:56 AM #57 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Keep in mind that not all antibiotics are as effective toward Lyme as others...and Prednisone can make Lyme much, much worse in the long term.
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Old 08-09-2010, 11:58 AM #58 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Indeed, mice are involved, as are squirrels, birds, and any wildlife that can be bitten by ticks or mosquitoes! This info from a top specialist at the Igenex Labs in California.
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Old 08-09-2010, 12:02 PM #59 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

And please don't forget that our pets are included in this group. In fact, the same specialist at Igenex Labs confirmed that we can infect our pets with Lyme but more likely they can play a part in infecting us. Lyme is transferred via a vector - any biting, sucking insect, and also via the body fluids (saliva, urine, semen, etc.) from another human. Hence, the rapid and pandemic spread of this disease.
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Old 08-18-2010, 04:25 PM #60 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

After two visits to Neuros and a trip to an ALS clinic--- all said yep, you got it. No additional testing (had an EMG and spinal tap by the Neuros), no interest at all in any other diagnosis, or listening to my medical history (have been like this for at least a year). Found a lot a material on ALS-Lymes and thank God that found a Lymes Literate MD. He saw me and said for every one reason they say you have ALS, i can give three that you don't. Gave me several different types of blood tests (you have to be tested for bands, the standard On/Off WB test is not as reliable) Anyway, the blood came back and I tested positive for Lymes and am on the road to recovery. It's no picnic, but at least i can see hope where there was none. If I had taken the diagnosis handed to me and not pursued other things who knows where I may be.

You need to be your own advocate. If your doctor won't listen or give you the tests find another one. I'm not sayying it is all about Lymes, it was for me, and from what I can see several others, too.
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