NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   PN Tips, Resources, Supplements & Other Treatments (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/)
-   -   Spingolin ????? (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/222885-spingolin.html)

Kobyshelby 07-12-2015 01:55 PM

Spingolin ?????
 
Hi everyone , has anyone tried Spingolin myelin sheath extract ? Available online without a prescription. Supposedly helps in the repair the Myelin Sheath. It's derived from Australian cattle. Any info would be greatly appreciated. Thank you Jim

caroline2 07-12-2015 02:06 PM

Hi, I'm in my 2nd month on Sphingolin and Inosine for nerve damage from hip replacement...my whole thigh is numb going into 5th year post op, but since on these two the burn/tingle is about gone. A naturopath put me on to these....they've worked for me.

Some here talked about concern about the cattle, but that does not concern me.

janieg 07-12-2015 02:09 PM

Sphingolin was discussed on this thread. Look for the highlighted red.

http://neurotalk.psychcentral.com/sh...ght=Sphingolin

Kobyshelby 07-12-2015 02:14 PM

Thank you for the info ..Jim

mrsD 07-12-2015 03:13 PM

Use Sphinoglin at your own risk. Read all you can about it...and see if you trust the makers to provide safe bovine sources.

I really don't think ANY bovine source is safe for nerve tissue in food or supplements. It can just be that the prions haven't been found yet in sources, claiming to be safe.

Not all prion information is available yet...it remains a very iffy problem.

DejaVu 07-20-2015 05:09 PM

Quote:

Originally Posted by mrsD (Post 1154602)
Use Sphinoglin at your own risk. Read all you can about it...and see if you trust the makers to provide safe bovine sources.

I really don't think ANY bovine source is safe for nerve tissue in food or supplements. It can just be that the prions haven't been found yet in sources, claiming to be safe.

Not all prion information is available yet...it remains a very iffy problem.

While I respect everyone's wish to pursue any treatment or any form of relief, and I know how tempting it can be to try almost anything, I am also very skeptical when it comes to believing the cattle/bovine supply is safe.

Several "health centers" in a nearby city are prescribing all kinds of bovine organ and tissue extracts for their clients. I look at the bottles and the information on the manufacturers. I also look at the prices. The various bovine supplements these centers are providing are not high quality anything.

Very frightening.

I cringe at some of what these "health clinics" are doing. It's so absurd! So very disconcerting.

Just for example: An acquaintance of mine goes to one of these practitioners. On the same day my friend was told the health center's testing confirms "beef" is toxic to him, he was prescribed 3 different "bovine extracts" for ingestion 3x daily, for each bovine extract. This was not an attempt at some kind of "desensitization" to beef. When asked about this, the practitioner had replied that she knew of no other method/ source/approach. :confused: :( Utter nonsense. :mad:

I am not implying members on this thread are, in any way, duped.
I am relating the fact that some "health practitioners" (and some) clients show little to no concern for the sourcing of any supplements, including the use of bovine derivatives. Some companies and practitioners seem to lack some common sense, while others seem to be lacking in ethics.

Having grown up on a bovine farm, having visited the slaughterhouses -- I have seen some of the beef cattle brought to slaughter. Some look extremely ill. :confused: :(

Please be sure your sources are as pure and as safe as possible! :grouphug:

DejaVu

caroline2 07-20-2015 05:35 PM

Many practioners have gone to "out of the conventional box" healing. I've worked with integrative MD's for many years and chiros too who work with Muscle Testing and work with Standard Process products. Many SP products contain animal glandulars etc. I've taken many of them over many years and even right now take Ligaplex II which contains several bovine extracts. SP has been around for more than 50 yrs, maybe close to 100 yrs and are in Wisconsin. Anyway,

I've completed 2 months on Sphingolin and a lot of the the burn/tingle on my thigh are gone. I'm going to stay off Sphingolin and see if the burn/tingle returns...but will stay with Inosine since I bought more of a supply.

I have more a "beef" with pharma drugs and the damage I and some loved ones have been thru. I won't get on that soapbox.

Maybe the burn will not return w/o Sphingolin, I'll find out. The Inosine label reads: Nerve Growth Factor.

These two were recommended by a naturopath.

DejaVu 07-20-2015 07:35 PM

Hi Caroline,

I'm laughing. :D Cute comment about your "beef with the pharma drugs."

I do understand. Been there, done that! Many times over.
We have to be careful no matter which path we take.

Glad you are seeing positive results!
Your experience is interesting to follow.
Hope it continues and you heal completely. :)

To Our Healing!
DejaVu

Mpiazza000 08-18-2015 12:30 AM

Mrsd, regarding the bovine comment. But don't we carry that risk anyway whenever we eat beef?

kiwi33 08-18-2015 02:12 AM

Mpiazza000, the short answer to your question is that it depends where you live/have lived.

In my case I lived in the UK when the BSE (Bovine Spongiform Encephalopathy) story was unfolding and ate beef there.

Because of that I am not allowed to donate blood here. That is something which I accept though I lived in the UK more than two decades ago - the chances that I am infected with the BSE prion are extremely small.

I wonder about the quantitative risk:benefit analysis involved in this decision.

mrsD 08-18-2015 02:20 AM

Quote:

Originally Posted by Mpiazza000 (Post 1163531)
Mrsd, regarding the bovine comment. But don't we carry that risk anyway whenever we eat beef?

Yes, to a certain extent.. But the central nervous tissue in beef holds the
greatest risk.

Just visit any good Mad Cow site and see. The prions are concentrated in the central nervous system.

Everything we consume as food and our water are contaminated
Today. So it becomes a problem of doing the least dangerous.
The cyanobacteria in our water is becoming concerning as well.
Listeria in dairy and other processed food is becoming more common.
All meats carry illness risks.
Salmonella in peanuts and peanut butter and other veggies.
Legionierres in the air we breathe.
The list is really long and alarming.
We are lucky indeed to dodge these "bullets" daily.

So I think looking for more risk should be carefully evaluated
And avoided if possible. Just my opinion.

kiwi33 08-18-2015 06:07 AM

I strongly agree with what mrsD and DejaVu have said about Sphingolin - i would not touch it with the proverbial barge-pole.

Who knows what you are getting when you consume a product extracted from cattle brains? It could well include the misfolded form of prion protein - I doubt that the sellers of Sphingolin are capable of assessing this.

Misfolded prion protein will kill you - it will (through well-understood biochemistry) convert your normal form of prion protein into its lethal form.

The alleged benefit of Sphingolin is not worth the risk in my opinion.

Mpiazza000 08-18-2015 11:06 AM

how about inosine?

Patrick Winter 08-19-2015 04:05 PM

Quote:

Originally Posted by Mpiazza000 (Post 1163642)
how about inosine?

I have been wary of taking Inosine because of the fact that I heard it can cause gout and/or kidney stones.

"Although no side effects have been reported with the use of inosine, long-term use should be avoided. A very preliminary double-blind crossover study that enrolled 7 participants suggests that high doses of inosine (5,000 to 10,000 mg per day for 5 to 10 days) may increase the risk of uric acid–related problems, such as gout or kidney stones."


So, would it be risky to take the 1000mg that is recommended for Neuropathy sufferers? :confused: Probably not. Tough call though. I am still considering it. I know there are some folks in this forum who take it and think they have seen its benefits.

Mpiazza000 08-19-2015 04:20 PM

Quote:

Originally Posted by Patrick Winter (Post 1164134)
I have been wary of taking Inosine because of the fact that I heard it can cause gout and/or kidney stones.

"Although no side effects have been reported with the use of inosine, long-term use should be avoided. A very preliminary double-blind crossover study that enrolled 7 participants suggests that high doses of inosine (5,000 to 10,000 mg per day for 5 to 10 days) may increase the risk of uric acid–related problems, such as gout or kidney stones."


So, would it be risky to take the 1000mg that is recommended for Neuropathy sufferers? :confused: Probably not. Tough call though. I am still considering it. I know there are some folks in this forum who take it and think they have seen its benefits.

Drink more water, monitor ur ur icon acid level.

Mpiazza000 08-19-2015 04:21 PM

http://www.healthline.com/health-new...ymptoms-030915

Vesicare is safe

Patrick Winter 08-19-2015 04:25 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164139)
Drink more water, monitor ur ur icon acid level.


I drink tons of water and seltzer. No issue there. I may give it a shot. Thanks.

Patrick Winter 08-19-2015 04:31 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164140)

Interesting. There are doctors out there who say Myelin can't be regrown at all. Don't you love them. So hopeful and optimistic. I know there was a study years ago that said even Topamax helped regrow mylein. Topamax supposedly is just brutal to take becuase if the side effects.

I wonder though if the brain related damaged mylein is different than the small fiber related mylein. I don't see a them saying it applies to all mylein damage just the brain related. Maybe someone on here knows what's up with that. Of course its mice so, not exactly a confirmed cure. Would need clinical studies. but liek I say why is it reason to panic when mice get cancer from things like aspartame, but when we see something hopeful in mice we poo poo it and say, its just mice doesnt mean much.

Judgoing by the comments section below it doesnt look very hopeful but those are MS patients, not SFN sufferers.

Patrick Winter 08-19-2015 04:46 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164140)

This is from 2003, it makes Topamax sound like a miracle cure. But, from what i have seen the side effects from it are pretty harsh.

"Topiramate improves both symptoms and objective measurements of peripheral neuropathy while also lowering levels of total cholesterol, blood glucose, and blood pressure and promoting significant weight loss," Dr. Vinik said.

Because previous trials had shown that high starting doses of topiramate can be toxic, the patients were administered 25 mg/day, titrated over 42 days to the maximum tolerated dose or 100 mg/day. The patients received the anticonvulsant for 84 more days. By the end of trial, dendrite length and peroneal nerve amplitude had increased, and total neuropathy scores had decreased from 14 to 11.8, Dr. Vinik reported. More important, "intra-epidermal nerve fibers actually grew back," he said. "That was the most dramatic observation."


http://www.medscape.com/viewarticle/457287

Mpiazza000 08-19-2015 04:49 PM

Quote:

Originally Posted by Patrick Winter (Post 1164155)
This is from 2003, it makes Topamax sound like a miracle cure. But, from what i have seen the side effects from it are pretty harsh.

"Topiramate improves both symptoms and objective measurements of peripheral neuropathy while also lowering levels of total cholesterol, blood glucose, and blood pressure and promoting significant weight loss," Dr. Vinik said.

http://www.medscape.com/viewarticle/457287

Anticonvulsant in general can help pain from neuropathy because it inhibits neuro firing. But if u inhibits normal firing. What do you expect as a side effect, and it would be pretty harsh. Gabapentin comes out the top in terms of least side effect for neuropathy hence prescriber use it often, until now the updated guideline recommends antidepressant more. But none of these really help with nerve regeneration

Sent from my SM-N7505 using Tapatalk

caroline2 11-11-2015 01:32 PM

I just happy I took both Sphingolin and Inosine for the 3 months I did as the BURN is gone from my thigh. Every now and then I may get a tingle but nothing like it was for 5 yrs after hip replacement nerve damage. I had no fears of trying it and glad I took the chance. So many talked about the dangers but I didn't feel that.

Now I'm going to use a Tens unit and see if the numb thigh could be helped...could the nerves be somewhat restored with a Tens.

EnglishDave 11-11-2015 06:01 PM

From what I could find on animal studies (mice), TENS Units actually damage crushed sciatic nerves, especially at high frequencies.

Dave.

mrsD 11-11-2015 07:06 PM

TENs is for blocking pain signals. There is little evidence that any healing is promoted. (this is what my PT said when I had my therapy.)

IFc is used (sometimes in conjunction with ultrasound) to actually promote healing. This treatment at my PT reduced my severe tendon injury in about 3 treatments. The pain remaining was bearable. I was pretty impressed.

Mpiazza000 11-27-2015 05:01 PM

Anyone else have tried this and have any feedback?

caroline2 11-27-2015 05:26 PM

On the Tens which I am now using at day 2. I used it on the numb dead thigh area today and could hardly feel it even at the highest number. So I don't have much faith that the Tens will "restore" nerves. But burn/tingle is still gone.

caroline2 10-24-2017 01:01 PM

I've been off the Inosine and Sphingolin for a couple yrs now and in recent months the burn and tingle in my thigh, surgery leg, is back. So I'm going back to them, still have some Inosine and will use it but will work to be back on both Nov. 1 and see how it goes.


All times are GMT -5. The time now is 04:59 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.