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Cough Syrup Restores Speech in PALS Overnight
ichisan
Posted: Friday, July 13, 2012 5:54:11 PM
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For nearly 6 months, my wife has experienced no progression in her disease. That is, until about 3 days ago. That's when her speech began to falter. Last night, she could only whisper and I could barely make out her words. So I decided to experiment with Dextromethorphan, the main therapeutic ingredient in Nuedexta that's been in the news lately. I went to the corner drug store and bought a bottle of Delsym cough syrup. The package says that one teaspoon (5 ml) contains 30 mg of Dextromethorphan. I gave her a teaspoon before bedtime.

When she woke up this morning, she said in a normal voice that she did not sleep well and that she was having nightmares during the night and was feeling jittery. I was amazed that it worked so fast although I suspect that the 30 mg dose may be too high and that maybe 15 mg would be better.

Has any other PALS experienced such a quick positive response with Dextromethorphan? Let me add that might wife also takes a cocktail of supplements (mostly amino acids) to help with circulation, vasodilation and vascularization. I believe that this is what has kept her disease from progressing in the last 6 months. It's possible that her regimen made Dextromethorphan even more potent than it normally is.

Louis
Olly
Posted: Friday, July 13, 2012 7:20:24 PM

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Louis,
I have also reported that this helped me with speech etc.


Plus we have a whole thread on it..

Nuedexta trial for bulbar issues of swallowing and speech?

http://www.als.net/forum/yaf_postst50343_Nuedexta-trial-for-bulbar-issues-of-swallowing-and-speech.aspx

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
ichisan
Posted: Friday, July 13, 2012 7:34:54 PM
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Olly wrote:
Louis,
I have also reported that this helped me with speech etc.


Plus we have a whole thread on it..

Nuedexta trial for bulbar issues of swallowing and speech?

http://www.als.net/forum/yaf_postst50343_Nuedexta-trial-for-bulbar-issues-of-swallowing-and-speech.aspx
Olly, one of the reasons that I started a new thread is that it bothers me that PALS are talked into buying an expensive proprietary product with a doctor's prescription when a relatively cheap substitute is already available over the counter. Better yet, the cheap drug seems to be just as effective as the expensive one. It bothers me a great deal that a few unscrupulous people (assholes, really) are using the terrible illness of PALS as their ticket to fortune.

Louis
Olly
Posted: Friday, July 13, 2012 8:12:53 PM

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Louis,
I understand your reason about using a cheap availble drug and not getting screwed but it is also important that PALS know it works and what dosing to take etc.

That's availble on the other thread..

I'm really please it has helped your wife but also think, not proven yet, that is may also help with other areas of the nervous system outside the brain...

I found when I took over 10ml I got woozy so i have stuck to 10ml at a time.

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Friday, July 13, 2012 8:19:04 PM

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For those thinking of taking this please read the other threa and keep the following in mind...

What is the most important information I should know about Delsym (dextromethorphan)?
Do not give this medication to a child younger than 4 years old. Always ask a doctor before giving a cough or cold medicine to a child. Death can occur from the misuse of cough and cold medicines in very young children.

Do not use dextromethorphan if you have used an MAO inhibitor such as isocarboxazid (Marplan), phenelzine (Nardil), rasagiline (Azilect), selegiline (Eldepryl, Emsam), or tranylcypromine (Parnate) within the past 14 days.

Serious, life-threatening side effects can occur if you take dextromethorphan before the MAO inhibitor has cleared from your body.

Do not use any other over-the-counter cough, cold, or allergy medication without first asking your doctor or pharmacist.

If you take certain products together you may accidentally take too much of one or more types of medicine. Read the label of any other medicine you are using to see if it contains dextromethorphan. Dextromethorphan will not treat a cough that is caused by smoking, asthma, or emphysema.

Read more at http://www.drugs.com/mtm/delsym.html#SaEiZPL4kyWycx53.99


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Surfer Guapa
Posted: Friday, July 13, 2012 10:39:13 PM
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One of my children has a catastrophic epilepsy that has been controlled for several years by the Ketogenic Diet. There have been several other parents in one of my groups that have noted that their children have significantly less seizures on days/ nights when cough medicine with dextromethorphan. During one of these discussions, a parent posted this article:
http://www.examiner.com/article/dextromethorphan-cough-medicine-may-work-reducing-myelin-damage-ms-patients

ichisan
Posted: Friday, July 13, 2012 11:17:32 PM
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Olly wrote:
Louis,
I understand your reason about using a cheap availble drug and not getting screwed but it is also important that PALS know it works and what dosing to take etc.

That's available on the other thread..
Sorry but I refuse to use the other thread because I see it as an advertisement for Nuedexta. Proper dosage can be decided through self experimentation. We cannot afford to wait years for the experts to figure it out.
Quote:
I'm really please it has helped your wife but also think, not proven yet, that is may also help with other areas of the nervous system outside the brain...
Yes, I suspect that it may be also beneficial in restoring motor neurons in the spinal cord. My wife did say that she felt a little bit more strength in her right leg after waking up. The problem is that there is less blood flow in the spinal cord and any inflammation makes it worse. For this reason, I think that a regimen geared toward vasodilation and neovascularization is probably helpful.

Louis
ichisan
Posted: Friday, July 13, 2012 11:18:52 PM
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Surfer Guapa wrote:
One of my children has a catastrophic epilepsy that has been controlled for several years by the Ketogenic Diet. There have been several other parents in one of my groups that have noted that their children have significantly less seizures on days/ nights when cough medicine with dextromethorphan. During one of these discussions, a parent posted this article:
http://www.examiner.com/article/dextromethorphan-cough-medicine-may-work-reducing-myelin-damage-ms-patients

Every interesting. Thanks.

Louis
sceptic
Posted: Friday, July 13, 2012 11:58:42 PM
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Louis, the other thread is valuable because some of us are able to secure Nuedexta for less than $30 a month. And the recent webcast provided the dosage amount they will use in the trial. I have been on it for a few weeks. My swallowing is improved, my speech is at times better. I am also taking you wife's regimen. In all I have noticed no degradation in several months.

It sucks that not all can afford the Nuedexta prescription, and like I said I would surely do what you et al are doing with the dex cough syrup.

BTW< I had a cervical spine MRI today (because some of my symptoms come and go depending on how I hold my neck so my neurosurgeon is looking for causes), and the radiologist and I discussed the whole ischemia issue. He agreed that the capillaries in question do not show up on the MRI due to the resolution, but he also said that the effects of ischemia might be visible in nearby tissue, and he would look for it.
Olly
Posted: Saturday, July 14, 2012 9:59:21 AM

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Something I posted in another thread caught my eye and may be relevant to self dosing or self testing of any substance concerning modification of SOD1 or defective SOD1.


This could indicate that if we find something that works on mutant SOD1 there may be a long time taken to transport that repaired or modified SOD1 to site and results therefore would take say up to 500 days or less depending on onset site and entry point of the therapy?

Hope that makes sense but this may only apply when it comes to SOD1 modification.

It may also indicate that if some clinical trials are being tested against SOD1 mutants there may be a long time before any results are seen, if at all, depending on the supposedly theraputic action.

The design of clinical trials should build the time taken of axon transport system in to designing their trial dependding on mode of proposed theraputic action.........


''Two differences between SOD1 molecules in motor neurons and other cells are its long half-life and higher concentration.

Concentration of SOD1 is greater in motor neurons than in other neurons and glial cells, and it is found not only in the cell body of motor neurons but also within axons and nerve termini (19).

To reach the nerve termini, SOD1 is transported through the axon by using the slow component b of the anterograde axonal transport system (20), which has a rate of 2–8 mm/day.

Thus, the transport time for motor neurons with a meter-long axon could approach 500 days, and the life span of the protein must exceed the transport time.''


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Saturday, July 14, 2012 10:01:35 AM

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It may also mean that both short term and long term effects should be taken in to account when trying any new therapy due to axon transport system.

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
RL Schafferr
Posted: Saturday, July 14, 2012 10:19:41 AM

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Olly, that doesn't hold water. How do u explain the immediate results we see?
Axion has to react at the NMJ to promote movement, speech, etc. So it must travel quickly. The SC is an example. Most people saw immediate results. Some over night. All my gains was realized in the first week.
HappyPhysicist
Posted: Saturday, July 14, 2012 11:40:05 AM
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Louis,

My improvement in swallowing showed up gradually and my speech continues to decline, but that might be more due to the decline in my lungs. Also, my speech and swallowing have been on the ropes for about 2 years now, so I think my damage is permanent. Dex/Nudexta should be more pronounced in those who are just beginning to experience speech and swallowing problems.

Thanks for the update!

Ben


If it is done in secret, it is done in vain.
Olly
Posted: Saturday, July 14, 2012 11:41:09 AM

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Ron,
what I'm saying applies to SOD1 mutations and their specific theraputics.

OSC and other suppliments/drugs may be acting on inflammation which would have an immediate or quick effect but if you do somehow modify or correct mutant SOD1 the repair may take a long time. Depends on where the repaired SOD1 starts from in the axon?

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Nemesis
Posted: Saturday, July 14, 2012 4:14:08 PM

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It is very imporant for any discussions in this forum to recognize that the neuromuscular junctions (NMJs) are not proteced by the blood brain barrier (BBB) and consequently may be seen as windows "fenestrae" between the blood and the central nervous system (CNS).

Keep that in mind and you'll be better off.


Don't just ask what scientists can do to speed up the solution for ALS or when they will do it, instead ask yourself what you can do right now to solve ALS asap.
ichisan
Posted: Saturday, July 14, 2012 5:38:42 PM
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Nemesis wrote:

It is very imporant for any discussions in this forum to recognize that the neuromuscular junctions (NMJs) are not proteced by the blood brain barrier (BBB) and consequently may be seen as windows "fenestrae" between the blood and the central nervous system (CNS).

Keep that in mind and you'll be better off.
Nemesis, there is merit to what you say. However, PALS who have taken dextromethorphan have not reported any pronounced improvement in any part of the body other than the throat/mouth areas. This tells me that dextromethorphan is acting directly in the brain. One is left to speculate as to why this is so. Is it the blood/spinal cord barrier? I really don't think so. I think it is more likely that the vasculature in the spinal cord is not as plentiful or as as wide as in the brain. Any inflammation is bound to have a much more restrictive impact in the spinal cord. Just thinking out loud.

Louis
Nemesis
Posted: Saturday, July 14, 2012 5:59:19 PM

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You are putting too much emphasize on neuroinflammation, no PALS in his/her right mind will allow that to rampage, given the current knowledge.

What we need to focus on is how to halt neurodegeneration, but I don't have any solid anwers on that account .



Don't just ask what scientists can do to speed up the solution for ALS or when they will do it, instead ask yourself what you can do right now to solve ALS asap.
Olly
Posted: Saturday, July 14, 2012 6:39:14 PM

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Talking about inflammation this paper gives a different insite to inflamation modulation in ALS


Inflammation: The good, the bad and the therapeutic

It began, as scientific investigations often do, with a tragedy to someone close. Isaac Chiu, PhD, an undergraduate student in biochemistry at Harvard University, learned that a family friend had developed Lou Gehrig’s disease (also known as amyotrophic lateral sclerosis, or ALS), and was quickly and mysteriously losing muscle strength and control. Devastated, Chiu wanted to know more.

Articles in medical journals gave him the basics: Some 10 percent of ALS cases are inherited; for the rest, the insult that unleashes the disease is unknown. There is no cure, only a handful of supportive treatments. ALS has long been viewed as a neurodegenerative disease, one that exclusively affects motor neurons in the brain and spinal cord.

But as he read more, Chiu saw another possibility. “One of the components, even from the early ALS studies, is inflammation,” he says.

Chiu understood from his undergraduate courses that inflammation is a hallmark of an immunologic reaction. So when the time came for graduate school, Chiu sought out Michael Carroll, PhD, director of the immunology graduate program at Harvard Medical School and a Senior Investigator in the the Program in Cellular and Molecular Medicine and the Immune Disease Institute at Children’s Hospital Boston (PCMM/IDI).

But Carroll was hesitant to take on the project. A consummate immunologist, he was an expert in the mechanisms of lupus, an autoimmune disease in which the immune system mistakenly attacks the body’s own cells as foreign intruders. Lacking intimate knowledge of neurology, Carroll initially thought it a far stretch to mentor a graduate student interested in a disease marked by dying motor neurons.

Still, he had heard of others who were working out a possible role of inflammation in Alzheimer’s disease. Several other conditions, such as Parkinson’s and Huntington’s, once solely in the domain of neurologists, were also showing evidence of an inflammatory component. Carroll had recently read scientific papers about schizophrenia that strongly implicated genes involved in immunity. And in multiple sclerosis, he knew, the immune system unwittingly attacks the fatty layer that sheathes the nerves.

So Carroll decided to give Chiu a shot. They began with a very basic question: could targeting inflammation be a new route to therapy for ALS? The answer turns out to be a definitive yes – but not in the way they expected.

Working the project

The two began their studies with the hypothesis that inflammation was bad for ALS – an idea consistent with reports Chiu read in the literature -- and that anti-inflammatory agents would be good treatments. Their thinking was based on the work of other researchers who showed that, in mice with a form of ALS, certain cells in the spinal cord spew out progressively more pro-inflammatory biochemicals as the disease worsens. Perhaps ALS was an autoimmune disease, in which the immune system was wrongly attacking motor neurons. “I was hoping we would find some key toxic factor that we could block in ALS,” says Chiu.

But over the next five years, Chiu found the complete opposite.

Like his predecessors, Chiu began with mice genetically engineered to develop ALS. These animals make too much of the mutant superoxide dismutase1 (SOD1) protein (in humans, mutation of the SOD1 gene is responsible for 30 percent of genetically inherited cases of ALS). He intended to observe the animals’ spinal cords and brains as they developed ALS symptoms, but from the outset, the experiments were challenging, and finding the right methods to study inflammation in the rodent brain and spinal cord required more effort than Chiu had anticipated.

And then Chiu spotted a strange phenomenon.
First, a certain kind of T-cell from the immune system began accumulating in the spinal cord, and to a lesser extent, the brain, as the disease worsened.

This was odd because ALS is a considered a “sterile disease,” one that does not involve viruses or bacteria, which T-cells are normally brought in to fight.

What’s more, T-cells normally don’t cross the formidable barrier that lies between the body and the brain/spinal cord.

More bizarre still, just after the T-cells began appearing, a group of brain cells called microglia activated and started changing to resemble specialized immune cells known as dendritic cells.

(Dendritic cells, normally found at the body’s interface with the outside world -- in the nose and lungs, for example -- absorb foreign agents and present them to other cells in the immune system for possible targeting.) In the ALS mice, the activated microglia began swelling, and their thin, arm-like processes began homing in on the injured motor neurons.

“The microglia were acting like immune sensors,” says Chiu. They were surveying the tissue as an immune cell would roam in the blood circulation in search of a virus or bacterium. But there was no microbe. What were these activated immune-like cells doing?

Chiu turned to a technology called microarray analysis, which measures gene activity in cells, to see if he could determine what kinds of proteins the cells were making. He expected to see the microglia in ALS mice, as they got sicker, churn out progressively more toxic, pro-inflammatory agents.

This would be a sign that the immune system was attacking motor neurons, as hypothesized. Shockingly, Chiu found the opposite: the activated microglia were damping down production of pro-inflammatory agents, while boosting production of protective growth factors.

“This went against the grain,” Carroll recalls. “The newest thinking at the time was that inflammation is actually causing injury in the central nervous system. But in this case, inflammation is protective.”

The other side of inflammation

Inflammation is a key part of the body’s immune defense. When an infectious agent breaches the body, immune cells are signaled to spew out powerful inflammatory chemicals to take out the threat.

But inflammation also has a healing property: after an injury, immune cells are commissioned to deliver pro-healing agents to speed recovery. One of these, insulin-like growth factor 1 (IGF-1), was produced abundantly by activated microglia from Chiu’s ALS mice. Were the microglia actually helping fend off disease?

Chiu went on to prove just that.

He genetically engineered his ALS mice to lack the kind of cells, known as alpha-beta T-cells, that he suspected were signaling the microglia to become activated – but left the rest of the animals’ immune systems intact. He reasoned that if the T-cells were helping to prevent neurodegeneration by spurring production of healing growth factors like IGF-1, then ALS mice lacking these cells would do worse than rodents with them.

That, in fact, was the outcome: the mice lost more weight, deteriorated in motor function sooner and died earlier than ALS mice still carrying alpha-beta T-cells.

Chiu now suspects that ALS is initiated by some still unknown agent or event.

Then, as nerve cells begin to sicken and die, the nervous system tries to right itself by making microglia behave like wound-healers, secreting IGF-1 and other factors in an attempt to preserve motor neurons. “If the immune system has evolved in a way to help heal motor neurons,” Chiu says, “maybe we should start looking at what the body already has tailored to the healing response.”

Into the clinics

People are already trying to tap into this healing – but under the medical radar.

In May, the New York Times reported that ALS patients are scrambling to get a drug called Iplex, which was pulled from the market due to a patent dispute. Intriguingly, Iplex contains IGF-1 formulated with an additional binding protein that helps it cross the blood-brain barrier to get into the central nervous system. Scientific studies do indicate that IGF-1 can protect motor neurons, and the Food and Drug Administration is now allowing a few ALS patients access to Iplex under an Investigational New Drug application. But it has not been formally tested in ALS patients.

What has been tested is a drug called minocycline, an antibiotic that suppresses inflammation.
Early on, however, the trial was stopped because the drug was actually accelerating ALS patients’ neurodeterioration. Chiu thinks that minocycline, in blocking inflammation, also blocked IGF-1 and other beneficial, neuroprotective effects of the microglia in ALS.

Although many questions remain, what seems clear is that inflammation’s effects can vary depending on the context. It may be that microglia are both protective and harmful in ALS, just as inflammation can be destructive or healing to the body based on whether the trigger is a microbe versus an injury.

“When we think about therapy for ALS, we should not think about blocking the whole inflammatory process,” Chiu says, “rather just enhancing the protective part.”

www.idi.harvard.edu/.../inflammation_the_good_the_bad_and_the_...


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
ichisan
Posted: Saturday, July 14, 2012 8:35:49 PM
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Olly, interesting story. What I've read about dextromethorphan is that it is both neuro-protective and anti-inflammatory. Killing two birds with one stone sounds like a big winner to me.

What I find puzzling is that dextromethorphan obviously works very differently than sodium chlorite. My wife experienced none of the fasciculations with dextromethorphan that she once did with sodium chlorite. Since dextromethorphan has been found to restore the insulating myelin sheath that envelops neurons and their axons, I am forced to conclude that the fasciculations associated with sodium chlorite are due to a lack of insulation. I hypothesize that electrical leakage may be the cause of most if not all of those fasciculations. That is to say, sodium chlorite apparently decreases the inflammation but does not repair or protect the neurons.

Louis

PS. I now think that dextromethorphan is the new do-it-yourself miracle drug that sodium chlorite used to be. Thank God all the patents are expired.
Olly
Posted: Saturday, July 14, 2012 8:53:18 PM

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Louis,
and anyone else thinking of trying this see below.


Caution should be exercised when taking dextromethorphan when drinking grapefruit juice or eating grapefruits, as compounds in grapefruit affect a number of drugs, including dextromethorphan, through the inhibition of the cytochrome p450 system in the liver and can lead to excessive accumulation and prolonged effects.

It is generally recommended that grapefruits and grapefruit juices (namely white grapefruit juice) be avoided while using dextromethorphan and certain other medications.

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
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