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Old 08-19-2010, 02:00 AM #61 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

J kob, what sort of symptoms did you develop that mimicked ALS? My brother had the needle-shock-test thing and general neurological tests (standing on foot, etc), as well as general tests to rule out strokes, diabetes, heart disease, etc. He started having symptoms in the spring of 2009, and he is now almost helpless, and should be in a nursing home. He said he suffered from many cramps and vibrations, emotional sensitivity, weakness in one hand, etc. Now he can barely walk and hold his head up. Maybe I'm grasping at straws, but he has always resisted medical intervention and has never had follow-up tests or second or third opinions. He also told me he'd suffered from muscle issues and emotional sensitivity for SEVEN YEARS before his hand gave out. Then the symptoms moved in fast-forward. My father had Parkinson's (we think) but he died young, so who knows for sure? Maybe you can guess what I'm getting at. As a member of a family with neurological problems, I'm terrified but hopeful. My own anxieties are causing twitches and strange vibrations in my muscles, but I also got a strange bite on my foot about a month ago that resulted in a small bull's-eye, which eventually cleared and now I still have an itchy, crusty area. I've had some fatigue on and off and a few days of low-grade fever, but nothing like what lyme sufferers describe (sore throat, headaches). Like I said, I'm grasping at straws, hoping to save my brother's life...
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Old 08-19-2010, 06:29 AM #62 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

for Phil; In the 4 months of treatment, did you notice ANY improvements?
The meds are making Tom so very sick, I don't think he will last 4 months to see any improvements.

Last edited by Tom's Support : 07-27-2010 at 06:31 AM Reason: directed at earlier comment
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Old 08-19-2010, 06:31 AM #63 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Quote:
Originally Posted by Daphne View Post
J kob, what sort of symptoms did you develop that mimicked ALS? My brother had the needle-shock-test thing and general neurological tests (standing on foot, etc), as well as general tests to rule out strokes, diabetes, heart disease, etc. He started having symptoms in the spring of 2009, and he is now almost helpless, and should be in a nursing home. He said he suffered from many cramps and vibrations, emotional sensitivity, weakness in one hand, etc. Now he can barely walk and hold his head up. Maybe I'm grasping at straws, but he has always resisted medical intervention and has never had follow-up tests or second or third opinions. He also told me he'd suffered from muscle issues and emotional sensitivity for SEVEN YEARS before his hand gave out. Then the symptoms moved in fast-forward. My father had Parkinson's (we think) but he died young, so who knows for sure? Maybe you can guess what I'm getting at. As a member of a family with neurological problems, I'm terrified but hopeful. My own anxieties are causing twitches and strange vibrations in my muscles, but I also got a strange bite on my foot about a month ago that resulted in a small bull's-eye, which eventually cleared and now I still have an itchy, crusty area. I've had some fatigue on and off and a few days of low-grade fever, but nothing like what lyme sufferers describe (sore throat, headaches). Like I said, I'm grasping at straws, hoping to save my brother's life...
If you think you have Lymes, act now. It will be a easy fix. 1 or 2 months on Doxycline. Even if you don't have it. The doxy will not hurt you. Some people take it all the time for acne. If you Bro has it. He will need to get a lymes test done at Igenex (sp). He is past the point of doxycline if he has lymes. the longer you wait, the more intense the treatment.
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Old 08-19-2010, 06:34 AM #64 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

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Originally Posted by Tom's Support View Post
for Phil; In the 4 months of treatment, did you notice ANY improvements?
The meds are making Tom so very sick, I don't think he will last 4 months to see any improvements.
Not at all, but I have suspected having lymes since the mid 90s. In that case, Doxycline would have no effect on it. Doxy only works if it is caught real early.
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Old 08-19-2010, 08:58 AM #65 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

I have ahd muscle twitching for years. The first 'symptom' i remember is having trouble walking (nothing major, just felt funny going up hill stairs, etc). Then when i sprained an ankle it seemed to get progessively worse. Went to my PC doc who saw nothing mechanical and the PA suggested a chiropractor. Did that for months, felt good, but did not get 'better'. When i saw the Nueros, they saw the twitching and focused in on that and the gait problem and did not listen to anything i said beyond that. Were not intersted in the ankle at all. All of the clinical stuff pointed to ALS so that is where they looked.

As i read more about Lymes it seemed to fit with the symptoms and progression of my situation. You have to go deep into the search pages away from the stuff that people are trying to sell you. I thank God that i have a friend who, too, is a lymes survivor diagnosed with a MND years ago who encouraged my wife and i to keep digging. I have heard of people who have waited until they were much worse and did not seem to improve once a treatment began. I do pray that anyone who gets this terrible news of any MND takes a deep breath and keeps faith. God has called us all to serve a higher purpose in life. We cannot know what it is now, but we can be sure of it.
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Old 08-25-2010, 03:02 PM #66 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Wow, when my brother-in law was being worked up his lyme titer was positive.

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Old 09-01-2010, 08:06 PM #67 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Doxycycline is still the drug of choice to kill Lyme, and also if the co-infection of Ehrlichia is present. I have been on it for one year and have my life back - I would say 95% improvement. Doxy or any other AB must be begun extremely slowly and increased very slowly; if full-dosage ABs are given right from the start the Herx reactions will be unbearable and dangerous and there is no need to handle it this way. Slow is best. Also, as these pathogens die, neurotoxins are released in the system and detox is necessary as the body may not be able to handle the load efficiently. The preferred detox through my LLMD (Lyme Literate MD) is quite easy and very effective. If you would like more info, let me know.
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Old 09-09-2010, 10:07 AM #68 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

Hi dhelfer,

I would love more info. THe thing I don't understand is that the symptoms of ALS and lyme's are not the same. Can you tell me more about your experiences with your symptoms, your doctor's, and your medical care? What symptoms you had and how bad were they.

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Old 09-09-2010, 04:09 PM #69 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

i dont know, you guys, this is really hard for me to read this thread. i am so so SO glad to hear that some of you may have treatment for whats going on. i have to admit that im being selfish right now and thinking of my PALS, who has been 100% locked in for 5 years (still has eye movement and some facial expressions). I keep thinking of him and the fact that he's been living this way for so long, clinging to every ounce of hope he can muster, just waiting for a cure. and i keep thinking how when he was diagnosed, his mom and girlfriend at the time heard that lyme sometimes mimics ALS, so they took him to be tested and they refused to do it.
im sitting here balling my eyes out wondering if there is just a small little chance that maybe he is one of the lucky ones? but dare I get his hopes up? i hate this.
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Old 09-09-2010, 05:51 PM #70 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

I paid for the testing myself because it wasn't covered by UnitedDeathcare. Also had to see a LLMD.

Money thrown away? Nope. I am not going to die wondering if I could be the one in a million who really have Lyme. So I will die with $1k less. You can't take it with you.

I have had tick bites and concussions and exposure to neurotoxins and years of exercise and PTSD and more vaccinations than I can count...

Oh well.

Last edited by RoadKill : 08-17-2010 at 05:56 PM
 
Old 09-17-2010, 01:04 PM #71 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

TO LizT,

How can they refuse? That's plain mean!

Can you pay out of pocket?

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Old 09-17-2010, 03:46 PM #72 (permalink)
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Default Re: Connection Between ALS and Lyme disease?

terrics- you know, i dont even know how they can do that. his mom is the one that was telling me about it and she wasnt very clear on that. she said that they said it was ALS for sure. But what gets me, is how can they say that if they didnt test for lymes?
i would think that he could pay out of pocket if his insurance wouldnt cover it. my concern is should i really bring this up and push it?
obviously he knows that lymes was a possibility and he didnt push to have it tested for. and i dont want to get his hopes up if its not really lymes. he's been so strong through all of this, that i worry that could crush him. what do you think terrics?
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