Has anyone heard anything about this treatment?

[Miss]

I received a note today from my cousin (a pathologist). The following was sent to him by a friend whose wife has ALS.

Leslie has been taking experimental drugs which are generally based on the attached. The gentlemen who patented these drugs is a microbiologist from Clemson who has been developing treatments for autoimmune diseases for 30 years. Massey Burch actually invested in the company years ago, but gave up because of cost and time.

Leslie is seeing some benefit from these meds. In mid-April 2009, she was beginning to lose some function in her fingers and by June 1, she could not get out of bed. She started taking these drugs in June and has seen some decline, but nowhere near the pace experienced Apr-Jun. Dr. is working to find the right combination that will completely stabilize her and help make a turn.

Interestingly, brother of the Dr. was diagnosed with ALS 17 years ago and has been on this treatment all along. When he started the meds, he had ambulatory and respiratory issues, all of which have disappeared. Dr. has treated 25 or so ALS patients w/ varying degrees of success. One current patient in Boston is a 44 year old female who had lost her voice a month ago and was having trouble breathing; today, her voice has returned and her breathing is greatly improved. Her father is a practicing neurologist and is dumbfounded by this success.

Of course, none of this means Leslie will necessarily improve. Dr. has several drugs going to market in Africa in March designed to cure HIV and herpes, so getting his attention on ALS can be a challenge. Having said that, he has been very helpful to Leslie and responsive when time allows. I thought you may find the attached interesting.

Method and composition for the treatment of disorders involving immunological dysfunction - US Patent 5846532 Full Text

If anyone has heard anything about this treatment, I would love to hear what they have to say or what the name of the drugs are - anything.

 

[Miss]

So, I am guessing no one has heard anything about this?

 

[CAHPAH]

No I had not heard of it.

 

[[email protected]]

I've not heard of it either.

 

[Al]

Usually if we haven't heard about it, it's really old and didn't amount to much or it's really new,like this week or it's bogus.

AL.

 

[Al]

The patent was issued in 1998 so I'd think it went nowhere.


AL.

 

[Miss]

I have my cousin checking a bit farther into it. I'll let you know when I find out something.

 

[mparker]

What is the doctors name and how ids the treatment going?

 

[Miss]

Can't find any more info on this. Must not have gone anywhere.

 

[tdamess]

got to do with r n a -- but it is way over my head .

 

[[email protected]]

I've not heard of this either.

 

[CAHPAH]

Miss
I glaced at the patent information.

First this deals with treating autoimmune diseses. There are some MND that may be autoimmune in nature (Multifocal Motor Neuropathy for one) that have been known to respond to autoimmune sepression. My wife showed postive to an autoimmune antibody for MMN but did not repsond to the IVIG treatments.

Second, although we don't know what causes ALS, I don't believe the evidence supports it being an autoimmune disease nor have I heard of it being successfully treated by autoimmune sepression treatment.

Third, RNA polynerase (which this treatment is about) is an enzyme the body uses to constuct RNA in cells. and although the patent talks alot about the treatments it gives no indication of the science behind how it might work. I don't claim to know much but I have worked in the immunology field for the past 25 years and I can't think of any scientific way that injecting RNAP is going to regulate an autoimmune problem.