Antibiotics

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mlb

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My brother George has had ALS since September 2003. Since, I have been all ears for just about any disease or treatment or experiment, etc... in case I could make a connection or a relation to a cure for ALS.

Recently, I woke in the middle of the night and could not sleep. I decided to watch some TV. I clicked the "on" button and on the screen, was the title of a series called 'MEDICAL MYSTERIES'. The illness documented was "Encephalitis Lethargica" which in the 1920s killed several million people. This was made into a film called "Awakenings" and starred Robin Williams.

I had seen the film a while ago but had never related it to some epidemic. I got very interested and watched as the story unfolded. In recent years, a doctor "Dale" decided to revisit the records held at the hospital where these patients died in 1920. The reason for his visits was that he had had several patients presenting the same symptoms and he feared a new epidemic was imminent.

After much research without any clues, Dr. Dale decided to go over the records and pinpoint similarities. He discovered that all these patients, including his, had started the illness with a sore throat. He conducted some tests and discovered that all suffered from a streptoccoccal infection.

A simple course of antibiotics was all they needed! This discovery came about some 80 years later ! A simple sore throat !

The interesting thing is that one of the doctors said on the programme that the basis of any illness is bacteria... I know many doctors will disagree with this... however, it has been and is MY belief. The overlooked and untreated sore throat in the 1920 epidemic led to these patients becoming rigid, paralysed, asleep, loss of speech, etc...

My question is this: Has anyone with ALS experimented with antibiotics and found some relief and which ones.

I assume that because of the length of illness, the antibiotic treatment ought to be agressive. Has anyone tried any such treatment?

I look forward to your comments.
 

trustinggod

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mlb,

In the first few months after my friend was diagnosed with ALS she was set up for a once a week I.V. of a blood product which I believe had something to do with antibiotics as well. Has anyone else heard of this? Linda kept at this for 6 months. She did not see any improvement in her symptoms. Linda did however believe that the supplements she took religiously along with her very low carb/sugar diet added perhaps a year or more of quality time to her life.
 

mlb

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Trustinggod,

I firmly believe that ALS is somehow a progression of some "bug" that went unnoticed or untreated. Similarly, I believe that experimentation, since we lack a treatment, is the key to discovering the cure. If antibiotics are to be used, then I feel that it would be necessary to try a variety as each antibiotic has a specific use.

Is it possible for you to find out what exactly was in your friend's IV?
 

trustinggod

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mlb,

My friend passed away November 16th after 4-1/2 years of living with ALS. I will try to find the paper work on what exactly was in the IV treatment she took.

This might take me a few days or more. I'll also try to give you a listing of the different supplements she took.

Take Care,
Jeanne
 

mlb

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Oh thank you trustinggod. I much appreciate it. I will never cease to search for an answer to ALS which has become my fixation for the past 4 years. This is why I find the exchange of information that prevails in this forum to be so important. One day there will be an answer whether it is through funded research or accidentally through experimentation by a loving carer - hopefully that day is soon.
 

Al

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Just a guess because they tried it on me and it didn't work but it may have been what they call an IGG Infusion. Intravenous Gamma Globulin. I got it for 2 days 8 hours per day but there are other schedules for doing it. They may use it if they think you have Multi Focal Motor Neuropathy or other auto immune disorder. AL.
 

mlb

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Thanks Al. Just posted an answer that disappeared midway! Here goes again.

I looked up IgG on the web and if I understand correctly, the composition is plasma. It is used to treat a variety of conditions and diseases to do with the immune system. The website also gives recommended dosages according to illness to be administered over a period of time (every two-three weeks)... The cost for one single treatment is $10,000... Some experience side effects..

I guess this is what you had done? At what stage since diagnosis did you have it done? How did they know so soon that it did not work. What was it supposed to do that it didn't do? Who suggested it for you to do?

Forgive me for asking so many questions but I need to assess the importance of communicating the information to my brother and avoid yet another disappointment for him if it is not relevant in his case.

Thanks in advance.
Anna
 

Al

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Hi Anna. It was about a month after diagnosed that they gave it to me. It is supposed to boost the immune system. Within a few days to weeks you should feel stronger if it works. The Neurologist that did my second opinion suggested it. I also did a six month trial of Cytoxan which is a cancer drug that kills your immune system and then they allow it to build up just in case there is some sort of auto immune thing going on. It didn't do any good either. Hope this helps. AL.
 

mlb

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Hi Al,

Thanks for the info. At least the treatment didn't do you any harm which I guess is the main thing.

My brother is in such a bad state at the moment that I feel the urgency of finding something that works. He has had such bad luck.... he went to China for a stem cell operation two years ago when he was still quite fit and this spiralled him down. He had a feeding tube inserted a few months ago and got the staphilococcus infection from the hospital! He is on antibiotics for this but of course they don't work.

He has so much to live for. A young and beautiful family. He was a successful businessman. Fantastic sense of humour, great human being.... why him?

I don't know how to find a cure. What to do.

Sorry to burden you with all this Al. I know you are fighting your own battle. I just wish I could find an answer.

Anna
 

Al

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Not a problem Anna. That's what I'm here for. AL.
 
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