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Old 05-09-2006, 10:50 PM #31 (permalink)
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Hi Upila. From what I have read and experienced the symptoms don't go for a crap in hours or even a day that you would really notice. I have had times when one day I can work a cork screw and the next day I can't. 2 days later I can work it. Haven't been able to work a can opener for quite a while but am not a fan of canned food anyway so it wasn't a big loss. I used a skill saw last week but I had trouble holding the switch in. I could hold the weight of the saw but my finger wouldn't stay on the switch for the whole time. This disease is just plain weird. There is no telling where it will take you. Day to day is about the only advice I can give.
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Old 05-10-2006, 07:25 AM #32 (permalink)
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Dear Upila,
I can hear the frustration in your words, and just wanted to let you know that I am thinking about you and your Dad. Like Al says, this disease is so unpredictable. We really have to try to live day to day, but that sometimes is easier said than done.
I have no great answers to your questions but just wanted you to know that you are not alone, I pray that your father's symptoms will level out.
You are such a wonderful son to your father, you care so much!
Hugs and prayers, Leah
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Old 05-10-2006, 07:46 AM #33 (permalink)
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Thank you each and every one for being there!

Dana, I hope your father has stabilized. The thing with my father is, that he does not have any breathing problems; on the contrary - after at least 3 years of not being able to sleep, because could not breath at night - now all of a sudden, since 4-5 months he sleeps just fine. Before that, he even changed the flooring to hardwood everywhere, beds, mattresses - you know, the whole thing - and could not breath still. According to the Lyme "thing," this would be one of the symptoms. So, what caused him to breath now? Totally frustrated.
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Old 10-05-2009, 04:58 PM #34 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

I just found this thread today and see that the last entry was in April of 2006! My husband was also diagnosed with ALS/Lyme and I feel that his experiences could possibly be helpful. Is anyone still interested in this topic?
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Old 10-09-2009, 09:24 AM #35 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

I am.
My dad was finally Dx'd with ALS after they ruled everything else out. He's going downhill VERY fast.
Speaking with my Mother last night, my Aunts are telling her it's probably just Lymes, etc. Part of me is upset that they are so dismissive and they don't have medical degrees, etc. The neurologist was dismissive of the Lymes when they asked about it in the same appointment they told my dad that he def has ALS. I guess from the reading I'm doing it depends on what camp you are in in the medical community.
So, my parents are on the internet and agressively seeking out how to get the other lymes test done as the standard one came back negative.
But even if Lymes comes back positive what does that mean exactly? Does the drug therapy really help?
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Old 10-20-2009, 08:33 PM #36 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

Radaki-
I was diagnosed with ALS in December and chronic lyme in March. I have been on iv rocephin, etc. etc. for the last 4 months and I have basically stabilized. I am definitely interested in opening up this topci again!
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Old 10-20-2009, 08:45 PM #37 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

varacara,
I was wondering how far your ALS/lymes disease has progressed. At what point in the disease did you begin iv rocefin? Interested.....
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Old 10-22-2009, 06:09 PM #38 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

I began rocephin in May along with iv gluthione and methyl b12. I am currently under the care of an LLMD as well as a naturopath and following the Burrascano protocol for supplements. I definitely have more strength than I did 6 months ago, and on some days, more energy. My speech has not improved so far, but from what my doctors have said as well as from what I have researched, neurological lyme can take years to improve. I'm hopeful.
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Old 10-23-2009, 04:37 PM #39 (permalink)
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Default Re: Antibiotics, ALS and LYME: need your help, again!

I am a diagnosed ALS patient. I was just screened for an antibiotic trial (Ceftriaxone) and I'm waiting to hear if I can participate. I was tested for Lyme disease and the results were negative. People are so harsh on the ALS doctors it seems. Trust me, I know first hand how frustrating this disease is but if there was any special diet or any miracle thing that would slow this disease we would know by now and everyone would be on it. This disease has a mind of it's own. I chose to participate in the study because my personality is one that has to be pro-active in order to keep my spirits up and feel productive. I also want my kids to see me fighting and never giving up. I know for a fact if that my Dr. could change the fact that I have this cruel disease he would in a heartbeat. I am so thankful that he has dedicated his life into helping people with te disease and continuing to try to find a cure. They can't lie and tell you that they can keep this under control. We need to work together on this and I feel like the only way to do it is to forget about the crazy diets and costly supplements...get out there and participate in what the researchers are doing. They are our best chance.

Live today, love today, stay passionate and strong and appreciate the things you do have.....I wish everyone well : )
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