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TerryG

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Don't waste your time. He will just tell you that there is no scientific proof so he will not recommend it. My neuro will not discuss anything beyond approved drugs and treatments.

Harsh but true
 

TerryG

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Our results clearly indicate that propofol can up-regulate Annexin A1 to inhibit the phosphorylation level of p38 and release of IL-1β, IL-6 and TNF-α, so as to inhibit inflammatory response. Carlos

Seen this in a lot of papers, suppresses inflammatories but does not seem to upregulate
anti-inflammatories, most importantly I believe, IL-4, IL-10 and possibly IL-13.
 

Nighthawk

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@TerryG:

These are only partial scientific papers.
The majority of these papers/abstracts can be found/read at ALS-TDI Forums under the Propofol thread.
 

TerryG

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These are only partial scientific papers.
The majority of these papers/abstracts can be found/read at ALS-TDI Forums under the Propofol thread.

I am never content with just abstracts Carlos and when it is available and is of relevance I will print them
out for continued reference. Am also fully aware of Louis’s thread on ALS-TDI, have been following this for a number of weeks. I have read many of the attached papers on Propofol and have previously written here – “Virtually everything you require in one treatment course. Surprising it hasn’t been picked before now.”
It may very well extend life expectancy but I don't think it is the silver bullet that Louis thinks it is and as the
weeks pass I think he is starting to realize it to. Without a doubt, the short term improvements seen in some
surely warrants closer scrutiny by the medical community. But where it may fall down, as stated in my previous post, it suppresses inflammatories from activated microglia and monocytes but does not seem to upregulate
anti-inflammatories. So as the disease progresses, Propofol may become less affective as a treatment but I hope I’m wrong, probably am.

Terry.
 
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Nighthawk

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Although, it might not be the definite cure for ALS/MND we PALS have been waiting for, but at least if it gets to stabilize the progression of the disease for some time, while more promising drugs are discovered, then Propofol is definitely worth to look at, isn't it?

Just like Oral Sodium Chlorite (NaClO2) was for a while.

Regards,
 

TerryG

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Although, it might not be the definite cure for ALS/MND we PALS have been waiting for, but at least if it gets to stabilize the progression of the disease for some time, while more promising drugs are discovered, then Propofol is definitely worth to look at, isn't it?

Absolutely!

“In 1996, I believe, disodium edetate (EDTA) was added to Propofol, which has antibacterial and antifungal
properties but also is a ‘chelator of divalent ions such as calcium, magnesium, and zinc’. Not all Propofol is
fortified with EDTA, some contain sodium metabisulfite, so you have to also question whether those who
did not see improvement had the former or less likely, latter.”

EDTA is available online. As you more than likely overloaded with Zinc. Thought this might interest you.
 

sculliford

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Dear all, I am really strongly considering Propofol for my brother! Is there anyone that has actually been to Peurto Vallarta to receive it? Or anywhere for that matter. We are from the UK and happy to travel anywhere. Would love some information on the best combination and how much.

Many thanks

Sarah
 

Nighthawk

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Dear all, I am really strongly considering Propofol for my brother! Is there anyone that has actually been to Peurto Vallarta to receive it? Or anywhere for that matter. We are from the UK and happy to travel anywhere. Would love some information on the best combination and how much.

Many thanks

Sarah


Sarah,

There is someone (a PALS) who mentioned on another Forum (specifically ALS-TDI Forums where the Propofol thread really started) that he's planning to travel to Mexico (Puerto Vallarta) in the next few days, to be treated with Propofol there.

He promised to report back on that Forum whatever the outcome of his planned treatment is.

Stay tuned.
 

Nighthawk

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Another PALS who very recently underwent a non-ALS procedure and required sedation (anesthesia) and, Propofol was used as the anesthetic for his procedure.
He reported improvements on his breathing and FVC values.

He posted this at ALS-TDI Forums where the Propofol for PALS thread is still ongoing.


See Copy/Paste below:


FightingAttorney10 Posted: Monday, July 22, 2013 8:33:09 PM

Rank: Newbie

Groups: Member

Joined: 5/28/2013

Posts: 35


I received 400 mg of Propofol via IV sedation. I have experienced some increase in strength in right pectoral muscle, and did check FVC which has increased 15%. However, I am having to go to different location due to bait and switch tactics. Please be advised that these quotes change dramatically and all these doctors are preying on us. I will be getting more Propofol in another location, but $1500 can turn into much more and very quickly. I am a good negotiator as it is part of what I do for a living , but they still are preying on us. I will discuss by private email only.

It is not terminal until you are in the ground. Fight till you cannot fight anymore.


As we see, more anecdotal evidence surfacing coming from more PALS who are being sedated with Propofol for non-ALS related procedures.

I would like the medical community to take a look a this and raise their voice to help PALS with this treatment.


Regards,
 
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Nighthawk

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For those PALS who might be interested on being treated with Propofol in Puerto Vallarta (Mexico) and still can...afford the expenses of traveling and staying there (important, if you can afford it), the Doctors who will be performing this Propofol procedure there just replied to an e-Mail requesting information about the cost of the procedure and also tried to address some of the questions PALS may have in regards to the procedure itself.

Below, there is a Copy/Paste of their e-Mail for those who might be interested:
(I, myself find it to be rather expensive as I don't know for sure for how long the "benefits" on the ALS/MND symptoms are going to last).



If anyone is interested in treatment in Mexico.

Thank you for your email.

Please see my Answers below and let me know if I can be of any further assistance.

1- We can schedule you to come as early as the first week of August, 2013.

2- As you already know, this is a rather recent approach, and it is done under the highest medical standards, Dr. Morales treats his patients depending on their current medical status to ensure the best outcome. Treatment is performed in our medical facilities and we have in our team anaestheaiologist, hematologist, vascular cardiologist and pheresis nurses.

3- The total cost is U.S. $2,000 per session, and includes all medical expenses related to the treatment.

4- Each session is performed PER DAY and we usually recommend no less than 4 sessions to have prolonged positive results.

5- We are currently in the selection process and are taking in potential candidates for treatment for the first half of August, if you would like to consider us for your treatment please let me know at your earliest convenience.

6- Dr. Estrada is an Anesthesiologist and Dr. Morales is an Hematologist will perform the treatment personally.

7- We ask 50% payment upon arrival and remaining balance should be covered upon completion of treatment.

Kind regards,


That's it.
Use the information on the provided e-Mail at your own discretion.
 

HelenL

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I was intrigued by this discussion, so when I recently had surgery for a Peg and Diaghram Pacer, I specifically asked for propofol. Unfortunately I did not notice any difference in weakness at all...
 

Jeff Long

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HelenL,
I too recently had the DPS surgery and asked for propofol. I don't really have much weakness yet (just lots of twitching and cramping beyond my significant bulbar issues) so didn't expect to see 'improvement' there; however, I tried to notice any other changes. Not sure if it was all in my head or real, but I was able to take the daily pills easily (and all together), which hadn't been the case. I was down to choking them back one at a time, and not always gettin' it done! Also, the first muscle cramp (tongue or legs) that I remember was 13 days after the surgery. Before, and now, I get them every night and sometimes a few during the day. Not sure propofol or 'mind games' was responsible, but I'd sure like to know!
I'd suck down propofol every week it if would help, so long as I stopped before I pulled an MJ!
 

Nighthawk

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@HelenL:

Dear HelenL, it seems that Propofol is dose dependent. Therefore, for you to feel some improvements on your ALS symptoms, the dose of Propofol used on you has to be high.
Low doses will not make you feel any improvements.

By the way, do you have any idea of how much Propofol was used on you during your DPS procedure?


Below, there is a Copy/Paste from ALS-TDI Forums regarding the dose of Propofol needed to experience some benefits in your ALS symptoms :



Based on the reports from PALS who have tried Propofol, here's what we know so far about their effect on ALS symptoms:

1. They work and the improvements begin to occur within hours after anesthesia.

2. Low doses of propofol (less than 200 mg) are not very effective against ALS symptoms.

3. 800 mg of Propofol can result in major improvements.

4. 1200 mg of Propofol alone resulted in very major improvements (ceiling effect?).

5. Improvements can last up to 4 weeks or more.

6. Low dose (150 mg) can eliminate anxiety levels for about 24 hours (1 patient).

7. Propofol seem to be effective against both Limb-onset and Bulbar-onset ALS.

If you can think of anything else I may have missed, post it here and I'll revise the list.


As you can see, if for your DPS procedure you were given only about 200mg of Propofol, you might not have seen any improvements.
Again, as with many drugs and supplementation, what may work for some PALS doesn't necessarily have to work for others.



Best regards,
 

Nighthawk

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More scientific evidence of why Propofol could protect Motor Neurons.

See copied/pasted scientific paper/abstract below:
(If the paper technical jargon is somewhat complicated for you, go straight to the bottom of the paper and read its conclusion instead)



EFFECT OF PROPOFOL ON AUTOPHAGY - MEDIATED STRESS RESPONSE IN MOTOR NEURON AFTER TRANSIENT SPINAL CORD ISCHEMIA IN RABBITS
Y. Watanabe1, M. Sakurai2, T. Kawamura1, K. Abe3
Anesthesiolosy, Cardiovascular Surgery, National Hospital Organization Sendai Medical
Center, Sendai, Neurology, Okayama University, Okayama, Japan

Objective: The mechanism of spinal cord injury has been thought to be related to the vulnerability of spinal motor neuron cells against ischemia. The aim of this study was to investigate whether propofol could protect against ischemic spinal cord damage by suppressing autophagic change.

Methods: We used a rabbit spinal cord ischemia model with use of a balloon catheter. In transient ischemia and treatment with vehicle group and treatment with propofol group, saline or propofol was administered intravenously 10 minutes before the induction of ischemia. Spinal cord was removed at 8 hours, and 1, 2, and 7 days after 15 minutes of transient ischemia. Cell damage was analyzed by counting the number of motor neurons and histological changes. Western blot analysis used for microtubule-associated protein light chain 3(LC3) andγ-aminobutyric-acid type-A (GABAA) -receptor-associated protein (GABARAP), temporal profiles of LC3 and GABARAP immunoreactivity were performed.

Results: In the Group I, about 85% of motor neurons were preserved until 2 days after reperfusion, but were serectively lost at 7 days. In contrast, in the Group P, motor neurons were presereved after 2 days. Western blot analysis and immunoreactivity for LC3 and GABARAP demonstrated that the induction of LC3 and GABARAP were slightly detectable in the sham group samples, which was then strongly enhanced at 8 hours, and was preserved until 2 days after reperfusion in the Group I. In the group P, LC3 and GABARAP were detectable but did not
admit enhancement.

Conclusions: Propofol eased the functional deficits and increased the number of motor neuons after ischemia. This study indicates that propofol may protect motor neurons from ischemic injury by suppressing augtophagic change. These results suggest that Propofol is a therapeutic agent in the treatment of ischemic spinal cord injury.


Best regards,
 

HelenL

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I'm seeing the surgeon next week, I'll try to find out what my dose was. Another factor is I don't have much in the way of twitches or cramping to begin with. I was a bit disappointed! _
 
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