But Dr Rafael responded to me 10 days ago, as follows: "....In my opinion, the moderate stage of spinal form of ALS, can be stoppen and neurological experience,sure !-..."

So, this includes all of us. Sceptic, keep us updated. I decided to stop sending him more mails after I read that you where also doing that. We dont want to flood his inbox either but I am afraid it already is. Currently this thread has over 6000 hits.

Fafut_1, I'm sorry I missed that post. Probably because CCSVI did not ring a bell. Very interesting and very promising. They should also consider ALS, Parkinson's, Huntington's and other neurodegenerative diseases.

Louis

Another CCSVI post I missed:

ZAMBONI CCSVI

Louis

Get the treatment investigator and anyone else required to provide relvant answers on line asap to reply to questions as they arise.


Hold your horses slightly, we're primarely talking arterial insufficiency not venous. But having said this, we may have to consider the latter at a later stage.

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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.

A subset of MS, ALS, PD, AD, etc., etc. will certainly have cerebrospinal venous insufficiency, but since arteriosclerosis is much more common, a CCSVI is an expensive lottery ticket with a slim chance of winning compared to OT.

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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.

Rob, OT like in off-topic, but I'm curious, do you in your capacity as Director of Communications actually have information suggesting that ALS researchers are reading this patient forum?

If so, can you provide a rough percentage of university affiliated users vs. private citizens in your logs?

By the way, out of the same curiosity, can you provide some general statistics for forum visitors per week/month etc.?

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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.

I agree and, besides, the neck veins thing is only temporary since it does not prevent a future relapse. Omentum transplantation, on the other hand, seems to offer a permanent solution by inducing revascularization.

The thing about motor neurons is that they don't just need a constant oxygen flow to function and stay alive (sodium chlorite seems to partially address the hypoxia problem) but also nutrients, which can only be supplied by adequate blood flow. That's where omentum transplantation comes in. Blood has been known as the life substance of the body for millenia. A lack of adequate blood flow leads to cell death. It's a simple theory, really.

Louis

Nemesis,

Assuming that the ALS ischemia theory is correct, I wonder if omental transplantation is the only effective route to revascularization. The reason is that it seems to be a rather expensive, delicate and dangerous operation. It would be nice if a known medicinal substance (e.g., vascular endothelial growth factor or precursor) could be directly and precisely injected into the affected tissues with a needle, hopefully with the same results.

Louis

Gus,

I think you are on the right track. I have found 4 things that promote revascularization and neuroregeneration: L-lysine, l-arginine, niacin and high blood oxygen. I figure that the latter can be achieved in any number of ways such as HBOT, oxygen supply (tank or concentrator), oral sodium chlorite, intravenous sodium chlorite solution or intravenous hydrogen peroxide. I think that doing HBOT a few times a week is recommended.

The trick is to take a high daily dose of l-lysine, niacin and l-arginine. 60 mg/kg of each is about right. More may be better. My wife now takes 6 grams of each every day. She has decided to phase out the OSC in favor of breathing oxygen through a nose canula. She keeps her oxygen saturation at 97-98% all the time, about normal. She increases it to 100% 1 hour a day. If you choose to do this, you will need a pulse-oximeter which can be bought at most drug stores.

So far, stopping OSC has not resulted in relapse. In fact, her breathing has gotten stronger in the last few days and her ALS has not progressed at all in the last 6 weeks. We'll see how she fares in the next few weeks.

Louis

PS. Any PALS who decides to stop taking OSC should replace it with some other kind of oxygen therapy. You run the risk of accelerated disease progression otherwise. I now believe that the only therapeutic value of sodium chlorite is blood oxygenation. As I've said before, I don't believe in Neuraltus's TauCl theory.

this may be the reason why pals (in early stages) feel better right after exercises - better blood flow/supply