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Posted: Wed Dec 26, 2007 6:10 am Post subject: Getting better too quickly... is it a bad thing?
I'm getting better rapidly from my MS. I've been taking n-acetylglucosamine (no clinical trials, just my own) for two weeks and the healing is staggering to me. Note: I am also on Copaxone, but have had no signs of improvement in the past few months. I immeditely starting seeing results from this n-acety stuff.
I am getting everything back extremely quick and it's kind of scaring me. I have heard that tysabri in combination with Avonex allowed the viral PML into the brain.
Was this because these people got better too quickly? I am getting better VERY quickly taking n-acetly glucosamine, two table spoons a day (morning and night). I have had no ill side effects, except for the marijuana like anxiety for the first hour after consuming.
I am so happy I can pee again and I can type and I can run down my steps and I can wiggle my big toe again and my abcominal MS hug is almost gone.
I am mainly concerned of devoloping PML from getting better to rapidly. I'm going to get blood work done once a month now, to be on the safe side. But, I don't get an MRI until Aug.
Any input on getting better fast vs. developing PML?
jim that is GREAT news! you sound like i did when i tried the klenner protocol. i think there is probably some magic thing missing from many ms sufferers' biochem, and i'm very happy that it sounds like you found one of yours!
Joined: Jul 28, 2005 Posts: 1999 Location: Sydney, Australia
Posted: Wed Dec 26, 2007 6:54 am Post subject:
I am no doctor, but my understanding is that the PML was not caused by people healing too quickly, but because the immune system was suppressed too much in the brain, allowing the viral agent which is the cause of PML, to run riot.
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Wed Dec 26, 2007 9:00 am Post subject:
The mechanism of Tysabri, as I understand it, it to stop EVERYTHING from crossing the blood brain barrier. PML resides in most people's brains and is kept in check by your immune system. When it even keeps the good parts from crossing, then the problems with PML begins. That is how I understand it, but I would get that verified by my neuro. I do believe that that was the issue with the few Tysabri/PML deaths. From what I recall, there was no mention of a rapid regain of functioning.
Joined: May 26, 2004 Posts: 1531 Location: London, ON, Canada
Posted: Wed Dec 26, 2007 9:13 am Post subject:
Loobie wrote:
The mechanism of Tysabri, as I understand it, it to stop EVERYTHING from crossing the blood brain barrier. PML resides in most people's brains and is kept in check by your immune system. When it even keeps the good parts from crossing, then the problems with PML begins. That is how I understand it, but I would get that verified by my neuro. I do believe that that was the issue with the few Tysabri/PML deaths. From what I recall, there was no mention of a rapid regain of functioning.
Tysabri, being a monoclonal antibody, is very specific as to what part of the immune system it stops from entering the brain. That is the good aspect of monoclonal antibodies...they are very selective.
Having said that, scientists don't know the long term effects of this kind of "tampering" with the immune system. We have already seen a small glimpse of this with PML albeit a very small incidence to date. As time goes on I'm sure that the docs will understand more and more the side effects of this kind of medication. Let's hope it can be controlled.
Joined: Jan 28, 2005 Posts: 1061 Location: Northern Ontario, Canada
Posted: Wed Dec 26, 2007 11:07 am Post subject:
Quote:
n-acety stuff.
How exactly does this stuff make you get better from ms so rapidly? what is it doing to your body. Many people get better from ms it's called a remission but this seems to be making a big difference, in your opinion how is this happening? _________________ Faith is taking the first step even when you don't see the whole staircase.
Joined: Jan 28, 2005 Posts: 1061 Location: Northern Ontario, Canada
Posted: Wed Dec 26, 2007 11:46 am Post subject:
How does it work though? when you take it what is it that changes in your body to make you feel this way? _________________ Faith is taking the first step even when you don't see the whole staircase.
It is a immunosuppresent. I'm doing this without any following from a clinical trial. I'm not recommending this to anyone, I just know what I'm feeling and I want to talk about it.
When I injest it, it starts out with slight anxiety that lasts for an hour.
The about the second or third time my legs started getting stronger and some numbness/tingling was become less frequent (still there but only when I'm tired).... Christmas day I find that my bladder spasm has let loose and I urinated standing about 6 times (I did, however, have to squat a couple times, but this was a miracle to me).... I generally am in a better mood and more energetic. I am still urinating with great stride. Jesus, I never thought I'd say something like that, lol.
This is similar to what Solumedrol did for me, but without the trip into the depths of hell. But, I keep taking it every day and am feeling more "normal" every day.
I will gladly keep everyone here posted on this. I'm not suggesting you do what I'm doing..... I'm taking a leap of faith, because there are no clinical trials on humans. The mice got better and I don't think placebo effect works with mice.... I don't think anyway?
I'm doing a lot better. Even my MS hug is not as bad. It's still there... I have a feeling it's more perminant than anything else I have.
I must also mention that I am in the early stages of really bad MS. I think a flare up every two to three months is qualified as really bad.
I am 28 years old and have been having symptoms since about 2003, although in 2001 something went wrong with my vision that seemed very similar to the optic neuritis I had last December, but I in 2001 I was also working a computer job where I had to stare at a monochrome moniter all day.... That was my theory for my problem at the time anyway...
I was only diagnosed last February.
I am taking a leap of faith, but it is too soon to say if I will have any adverse effects from the n-acetyl.
As I said, my neuro gave me the go-ahead on this.
I'd rather trust an extract from a seashell than the last option.... Tysabri. But who knows, maybe I'm making a mistake. All I know is this seashell stuff is making me feel super.
What I want to know is why do so many people think I should wait for clinical trials?
If something goes wrong with my own treatment, couldn't it also go wrong in a clinical trial???
I will get my blood sugar checked frequentlty and I have an MRI in August. If something goes wrong with my self-study, and it is physically or mentally noticable, I will demand tests from my Neuro. I'm very aware of what I feel in my body.
I'm hoping the scientist who treated these rats with this glucosamine writes me back.
Perhaps he could give me an idea of what kind of extra studies should be done on my body.
This was tested on kids with autoimmune problems with their bowels. A two year study. It helped them greatly. 8 out of 12 kids. It is written that there were NO ill effects found with this n-acetyl treatment.
I realize MS is a much different problem, you don't have to tell me that. But I'm set in my ways.... either fortunately, or unfortunately
This will be my last post until another reply, I promise, lol.
I forgot to mention that my L'Hermittes sign is no where to be found after using this stuff as well.
Before my ongoing experiment, I had it so bad that everytime I bent my neck, not only did I get the "zaps", but I'd also have a serious pain in my urethra every so often.
Joined: Jan 28, 2005 Posts: 1061 Location: Northern Ontario, Canada
Posted: Wed Dec 26, 2007 3:17 pm Post subject:
Quote:
What I want to know is why do so many people think I should wait for clinical trials?
For some of us there isn't enough time for trials and besides when you get to a certain point with ms it's hard to think of what you could do to yourself by experimenting with things that would be worse. I think it's great what you are doing and it's even better that it makes you feel the way you do. I wish i could find it! _________________ Faith is taking the first step even when you don't see the whole staircase.
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Wed Dec 26, 2007 4:16 pm Post subject:
I have researched this quite a bit this morning. What I found is that it says it helps in communication and transmission of neural signals. I've copied and pasted stuff from a few articles, but the websites are as follows:
N-AcetylGlucosamine is one of the eight essential sugars needed for optimal health and functioning in the human body and like the other glyconutrients promotes communication between the cells. N-AcetylGlucosamine (or Glucosamine its metabolic derivative) helps in immune system functioning particular in regards to HIV and tumors.
In addition, N-AcetylGlucosamine decreases pain and inflammation and increases range of motion in osteoarthritis patients and helps repair cartilage. N-AcetylGlucosamine has also been implicated as an aid to learning during certain mice studies. The saccharide or its derivative are found in the brains of mammal implying a relation to nerve functioning for learning.
In regards to disease processes, N-AcetylGlucosamine has been linked to Crohn's disease, interstitial cystitis and ulcerative colitis. Deficiencies of N-AcetylGlucosamine have been linked to diseases of the bowels and bladder. Those with colon cancer show particular deficiencies.
N-AcetylGlucosamine has been shown to repair the mucosal-lining defensive barrier called the glycosaminoglycan layer (GAG). According to animal studies, N-AcetylGlucosamine helped prevent the flu virus and herpes virus from occurring. N also has a hand in limiting chloresterol absorption and decreasing insulin secretion.
, N-acetylglucosamine (GlcNAc), has been found to suppress the damaging autoimmune response observed in multiple sclerosis and type 1 diabetes mellitus.
In studies on mice, Dr. Michael Demetriou and colleagues with the UC Irvine Center for Immunology found that N-acetylglucosamine (GlcNAc), which is similar but more effective than the widely available glucosamine, inhibited the growth and function of abnormal T-cells that incorrectly direct the immune system to attack specific tissues in the body, such as brain myelin in MS and insulin-producing cells of the pancreas in diabetes.
Together with a recent study on the use of GlcNAc in the treatment of treatment-resistant autoimmune inflammatory bowel disease, these findings point to the use of metabolic therapy using dietary supplements such as GlcNAc for treating autoimmune diseases.
I actually just ordered a "tub" of Ultimate Glucosamine and am going to give it a go. I talked to Opexa about it to see if it's on the "banned substances list". If you read my last rant about my rescheduled blood draw, you can see that I'm quite frustrated with the whole trial process since I'm doing so shitty, so I thought I'd give this a try. If my trial was two or three years ago I'd have been saying "that's ok" to the people informing me of the delays, but in the state I've been in, that's not exactly what I've been saying.
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