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Fluorinated Compounds and ALS

PostPosted: Tue Aug 27, 2013 1:49 pm
by sixwings
Volatile anesthetics like sevoflurane and isoflurane are heavily fluorinated. This got me to thinking that fluorine may have some therapeutic value in ALS. I was reminded that some of the fluoroquinolone antibiotics (e.g., ciprofloxacin and moxifloxacin) are also fluorinated. Like the anesthetics, the fluoroquinolones have strong anti-inflammatory properties. My wife and other ALS patients have reported feeling better while taking fluoroquinolone antibiotics. It may be that fluorine atoms just enhance a substance's existing properties. I think this is something that merits further research.

Re: Anesthetics and ALS

PostPosted: Sat Sep 07, 2013 5:23 pm
by quest
Hi Louis

How are you doing?

I haven't been here in awhile but noticed that you are speaking positively of topical anesthesia. Question - didn't you try that with your wife awhile back and conclude it didn't work and suggest to folks on ALSTDI that they not bother going that route?

I also was away and busy and not on ALSTDI for awhile but haven't seen any posts there lately on experiences with anesthesia. Wonder what's going on with this.

Glad you have decided to stay in the fight.

Re: Anesthetics and ALS

PostPosted: Sat Sep 07, 2013 7:42 pm
by sixwings
quest wrote:Hi Louis

How are you doing?

I haven't been here in awhile but noticed that you are speaking positively of topical anesthesia. Question - didn't you try that with your wife awhile back and conclude it didn't work and suggest to folks on ALSTDI that they not bother going that route?

I also was away and busy and not on ALSTDI for awhile but haven't seen any posts there lately on experiences with anesthesia. Wonder what's going on with this.

Glad you have decided to stay in the fight.

Thanks Quest. Actually, I don't recommend topical anesthetics to ALS patients, not because they're unsafe but because they don't work. About two weeks before she died, my wife tried topical 5% lidocaine along her spine with no results. She even tried it in a suppository without success. Then I did a little research and I learned that only a small percentage of a topical anesthetic gets into the bloodstream and whatever makes it through is quickly destroyed by the liver and eliminated by the kidneys. So it makes sense that lidocaine and novocaine are not used for general anesthesia.

That being said, I would recommend injectable local anesthetics to ALS patients.. There is at least one report by someone who experienced a reversal of symptoms (regained speech ability) after getting a shot of novocaine in the jaw at the dental office. My wife once noticed a mild improvement in her left hand after getting a small dose of lidocaine during a lung procedure. Once injected into tissue, lidocaine and novocaine have the ability to quickly spread into surrounding tissues via a process called diffusion. This is the reason that the tongue gets heavy after getting a shot in the jaw. I expect that a few doses of 2% lidocaine injected close to the spine will diffuse into the spinal cord and eliminate the inflammation, which is 90% of the ALS problem in my opinion. I think it's worth a try.

Local anesthesia is a very safe procedure that can even be done at home if necessary. It is safe because the effect is localized and does not depress the lungs as usually happens during general anesthesia. My wife was ready to try it on the same day that she died. I was hoping that someone else would volunteer and conduct a test but so far there are no takers. It's too bad. A significant improvement from injectable lidocaine would be a monumental breakthrough in the fight against ALS. Lidocaine is cheap and, even though it is a controlled substance, there is no way the government can prevent ALS patients from obtaining injectable lidocaine from various sources (you can even make your own from pure lidocaine crystals obtainable on eBay) and conduct their own experiments at home.

Someone I know will be getting sevoflurane sometime next week during a medical procedure. We'll see.

Re: Anesthetics and ALS

PostPosted: Tue Sep 24, 2013 11:15 am
by dms407
"Propofol Hemisuccinate Protects Neuronal Cells from
Oxidative Injury"

a few excerpts:

"Abstract: Oxidative stress contributes to the neuronal
death observed in neurodegenerative disorders and neurotrauma.
Some antioxidants for CNS injuries, however,
have yet to show mitigating effects in clinical trials, possibly
due to the impermeability of antioxidants across the
blood–brain barrier (BBB). Propofol (2,6-diisopropylphenol),
the active ingredient of a commonly used anesthetic,
acts as an antioxidant, but it is insoluble in water. Therefore,
we synthesized its water-soluble prodrug, propofol
hemisuccinate sodium salt (PHS), and tested for its protective
efficacy in neuronal death caused by non-receptor-
mediated, oxidative glutamate toxicity."

"PHS protects HT-22 cells and rat primary neurons from oxidative
injury caused by glutamate by acting as an antioxidant.
This conclusion is based on the observation that PHS,
like a-tocopherol, lowers the level of ROS accumulation
caused by glutamate toxicity."



Something to look at?

Re: Anesthetics and ALS

PostPosted: Thu Oct 03, 2013 8:06 pm
by sixwings
Dr. Raul Morales of Puerto Vallarta, Mexico, left this comment on my blog:
I am Dr. Morales Dedicated to study and explore new therapeutic approach for neurodegenerative deases (in the field of neuroscience) would you please send me more information about new therapeutic approach for patients with ALS.

I'm not sure what to tell him.

Local Anesthetics Could Be It!

PostPosted: Thu Oct 10, 2013 2:14 pm
by sixwings
There has been a lot of talk about persuading organizations like the MNDA, ALSUntangled, ALSTDI, the pharmaceutical industry, the FDA and others to conduct some sort of study involving the use of various anesthetics for the treatment of ALS. This is a complete waste of time, in my opinion. There is no doubt in my mind that every one of those organizations that are continually raising a shitload of money under the pretense of finding a cure for ALS are actually in it only for the money. They don't give a shit about ALS patients and never did. It's a huge fucking scam, folks, a criminal cartel. But what really pisses me off is to see someone like Eric Valor, who is paralyzed in bed with ALS, post comment after comment at the ALSTDI forum to dissuade people from looking into the potential of anesthetics. What a hypocritical asshole! Is this jerk for real? Does he really have ALS as he claims or is this a laborious scam? The only alternative I can think of is that Valor is mentally ill. Somebody should investigate him and find out why he is so adamant against trying anesthetics in the face of many reports from PALS who have tried them and seen improvements.

My point is that we can forget about getting the ALS vulture industry (including many universities such as Emory and Duke) to help us with finding an effective treatment for ALS. They are all a bunch of money-hungry criminals and should all be thrown in jail, at least the ones who are in charge. Now, I believe we can put all that shit behind us if only one or two ALS patients were willing to conduct a very simple and very safe experiment with lidocaine or novocaine. Local anesthetics are at least an order of magnitude safer than general anesthetics like propofol or sevoflurane because they don't depress either the lungs or the heart. The experiment would consist of injecting a small dose of 2% lidocaine near the spinal column and the back of the neck. Besides being a powerful anti-inflammatory agent (see the local anesthetics thread for more info), Lidocaine has the right properties we are looking for in an ALS drug such as potentiating the GABA-A and glycine alpha-1 receptors which are known to be deficient in ALS patients. In addition, it can easily spread into surrounding areas via diffusion. At least one patient with bulbar ALS has reported significant improvements after a visit to the dentist. The idea is that lidocaine can diffuse into the spine and spinal cord and potentiate the bad receptors while acting directly to reduce or eliminate any ongoing inflammation.

Based on its published properties, I can say that I am almost 100% positive that lidocaine can have a dramatic beneficial effect on ALS symptoms, probably even better than general anesthetics. My wife and I were planning on doing an experiment with lidocaine on the very day that she passed away. The reason that I think that this could be a breakthrough for the ALS community is that, if successful, ALS patients could treat themselves in the privacy of their own homes or obtain treatment at a local pain clinic. Lidocaine is a cheap drug and, although it is a controlled substance, it can be obtained from various sources in powder form. I made my own supply by mixing saline solution with pure lidocaine crystallised powder obtained from eBay. It's easy.

In conclusion, with just a little fortitude and expense, ALS patients could treat themselves and bypass the formidable barrier erected by the assholes in the medical research community. Is there anybody out there who is willing to try this? I don't see why not since it's safer than either propofol or sevoflurane.

Cryotherapy for Inflammation?

PostPosted: Sun Nov 17, 2013 9:12 pm
by sixwings
I've been exchanging ideas with someone via email and he mentioned that he noticed some improvement after using ice to cool down his spine. It is known that low temperatures can significantly reduce inflammation in joints. Freezing can also calm down over-excited motor neurons and we know that ALS patients have problems in those areas. I speculate that a daily 1 or 2-hour therapy with ice along the spine and the base of the neck could decrease the inflammation in the spinal cord long enough to allow the motor neurons to recover. The idea is that if ice can do what anesthetics do, it would be an awesome breakthrough, even if it only stops or slows down progression. And it's safe. Athletes use cryotherapy all the time to ease pain and inflammation.

Has anybody else tried ice packs? It would be an easy enough experiment to do.

The $1M ALS Treatment Prize4Life Challenge

PostPosted: Mon Nov 25, 2013 12:17 pm
by sixwings
Prize4Life
The $1M ALS Treatment Prize4Life challenge aims to encourage the identification of therapies that
have been experimentally validated in mouse models of ALS. To be eligible to win The $1M ALS
Treatment Prize4Life, a proposed therapy must meet the criteria outlined in The $1M ALS Treatment
Prize4Life criteria. One million USD will be awarded for an experimentally validated ALS therapy
showing significant efficacy in the disease mouse model. For this challenge, the aim is to develop an
ALS therapy that reliably increases the lifespan of B6/SJL high copy SOD1 G93A mice by at least 25%.
A treatment that meets the prize requirements and shows successful independent validation will be
awarded the one million dollar prize. Prize4Life wishes to make clear that the intended outcome of this
Prize4Life challenge is a treatment appropriate for future clinical development. Therefore all proposed
therapies must be practical and feasible in humans and practicality of a given solution will be taken into
account by the scientific review committee when awarding the prize.

Now, how hard would it be for an organization like ALSTDI to perform a simple lidocaine or sevoflurane experiment on a mouse model of ALS and claim the 1 million dollar prize? Why aren't ALSTDI and other ALS research organizations interested in experimenting with anesthetics for ALS even in the face of dozens of reports from ALS patients who claimed to have obtained improvements from anesthetic treatments? I'll tell you why. It's because there is no money in it for the assholes. $1 million USD is a drop in the bucket compared to the tens of millions they can make raising money for ALS research that will never prove successful. There is a lot more money to be made doing interminable research than in finding an actual effective therapy. In my opinion, all those ALS research organizations are engaged in criminal activity and should be investigated and shut down. In addition, whoever runs those organizations should be thrown in jail. Don't give them any of your money.

Having said that, how much money would it cost for a biologist working alone or a small lab to conduct the mouse experiment? $50,000, $100,000? Can any individual or even a group of concerned individuals afford this? I think so. Winning the Prize4Life challenge would go a long way toward publicizing the use of anesthetics for ALS.

If you are a fund raiser and know how to raise money to pay for this experiment, please contact me.

What if you see no improvements after anesthesia?

PostPosted: Sat Dec 07, 2013 2:33 pm
by sixwings
Some ALS patients will see no improvements after undergoing general anesthesia. I can think of two reasons why this happens. First, it is very likely that the inflammation in the spinal cord is blocking the flow of blood in that area. Anesthetics like propofol and sevoflurane are critically dependent on adequate blood flow to the brain and spinal cord in order to work properly. If the inflammation is high, blood flow will be severely impaired. One way to get around this is to use a local anesthetic like lidocaine. The latter can easily spread into surrounding tissues by a process called diffusion.

The second reason is that the patient may have a form of ALS that does not respond to certain anti-inflammatory drugs. In which case, I would recommend a different drug such as dexamethasone, a powerful anti-inflammatory steroid which is known to have helped a few ALS patients.

Re: What if you see no improvements after anesthesia?

PostPosted: Sat Dec 07, 2013 2:39 pm
by sixwings
sixwings wrote:Some ALS patients will see no improvements after undergoing general anesthesia. I can think of two reasons why this happens. First, it is very likely that the inflammation in the spinal cord is blocking the flow of blood in that area. Anesthetics like propofol and sevoflurane are critically dependent on adequate blood flow to the brain and spinal cord in order to work properly. If the inflammation is high, blood flow will be severely impaired. One way to get around this is to use a local anesthetic like lidocaine. The latter can easily spread into surrounding tissues by a process called diffusion.

The second reason is that the patient may have a form of ALS that does not respond to certain anti-inflammatory drugs. In which case, I would recommend a different drug such as dexamethasone, a powerful anti-inflammatory steroid which is known to have helped a few ALS patients.

Let me add that it is also possible that the motor neurons are so damaged that reducing the inflammation has no immediate results. So it's not a good idea to give up on anesthetics just because there is no immediate improvements. It's best to continue with weekly or monthly treatments and see what happens. Damaged motor neurons will need time to regenerate new axons and synapses.