Dr. Norman Latov; Gene Thearpy called VM202
 

Hi Everyone,

Dr. Noman Latov posted an interesting article that offers new hope via Gene Therapy called VM202. There's also a lot of other helpful info included on the page on a variety of topics. For example he covers a medical food callled metanix that requires a doctors prescription and much more. Please take a look when you have time. I believe there's something to be gained for everyone;
https://neuropathyjournal.org/diabetic-neuropathy/

Cliffman :)

Metanx and Foltanx
 

I could not afford the Metanx so my Endo RX Foltanx. The Metanx had a more complicated formulation but my Dr said that for 12$ the Foltanx would supply Methylated b-12 plus folic acid. I take it as my b-12 twice a day. I will have to check out the VM202, thanks Ken in Texas.

I've always been suspicious of the Metanx--
 

--as it is a complex formulation of B-vitamins but one can get all these separately and over the counter--and besides, when megadosing B12 in the 1000-5000mcg range generally the best thing to do is take that apart from the others, on an empty stomach, as the cobalamin molecule, being the largest one the body regularly uses, is quite easy to interfere with the absorption of.

When I was at the Neuropathy Summit in DC in December 2010 there were numerous Metanx representative there that I grilled incessantly about vitamin absorption/interaction, and it turned out they knew little about absorption/interaction issues. Maybe I should have expected they would be less than knowledgable--they were reps, after all--but still.

I suppose Metanx is an option for those who can't take multiple pills at different times AND whose insurance will reimburse well. But many people have found it cheaper to order their B12, B-complex, folate, etc. from one of the many decent on-line sources, and take their pills at different times for maximum effect.

Also want to point out that this product is made by Nestle.
With my certification, I have access to prescribe for clients "prescription medical foods" and supplements that are prescribed by MD's and naturopaths. While they might be in convenient packages or combinations, they are usually overpriced and contain ingredients that are questionable.... just my 2 cents. I mostly guide people toward a whole foods diet with safe supplements taken with out fancy combinations.

Interesting...thank you. The gene therapy mentioned (VM202) on the main page was what I was really more interested in. That said, who knows how many years it will take to become available, if at all.

Cliffman :)

Anyone taking a combination product that has methylcobalamin in it, or cyano for that matter, should take it on and empty stomach.

B12 is lost in food in the GI tract when the person is dependent on passive absorption. (i.e. the intrinsic factor is broken or not present). If not taken on an empty stomach the small absorption of B12, blocked or greatly minimized.
This same recommendation is given for RX drugs that are given in microgram amounts --meaning thyroid hormones, and digoxin.
The study I put up often, and is on our B12 thread, showing 13mcg into the blood from a 1000mcg oral dose, used empty stomach to get those results.

It can be a shame, to go thru all the hoops of diagnosis of low B12, etc, and then take the needed B12 the wrong way and fail at that level.

Some of us have been waiting for VM202. Stage III clinical trials/approval take a VERY long time. I believe stage III starts around January 2016.

I've been taking Metanx for three years and I can't say it has helped my condition. It does help others though.

I hope VM202 or other gene and/or stem cell therapies are successful and make it to market soon.

I am sure this experimental drug can also be used for people with other NP origins.
There are so many neuropathies where oxigen is withhold or toxins damaging the nerves.
So i think that this experimental drug holds great promise,next year a pahase 3 study will be taking placewhich if i am correct will last 1.5 years

Its a korean company who is developing this drug

Here is the video https://vimeo.com/121173993

http://www.viromed21.com/

Here are other threads on VM202
 

http://neurotalk.psychcentral.com/sh...ighlight=Vm202

http://neurotalk.psychcentral.com/sh...ighlight=Vm202

I hope it becomes available in a country sooner than the US. I can't imagine what kind of shape I will be in 1.5 years down the road. 😖

I know -, its so frustrating to see a promising new drug, but it won't be available until its too late to do us any good (and once it is approved it will probably be too expensive and impossible to get approved by insurance)

On the other hand - a lot of these drugs that seem promising end up having horrible side effects. So, its really necessary to test them thoroughly before putting them out for widespread use. I guess that's what they call a "catch-22"

While I do not doubt the results, I am generally skeptical of any new treatment for NP and I have not been able to find a patient out there say anything about VM202 other than the man in this video, who they used for quite a bit of PR earlier in the year.

I look forward to additional results from the trials as well as from other PN victims. We need regenerative medicine, not just pain management.

i have tried to find Keith winkowski on sicial media to ask him how he experinced this treatment but i have found him yet maybe one of you is succesful tracking him down

Only found this
http://www.spokeo.com/Keith-Winkowski

Maybe tomorrow i will give this some more time

Here he is:

https://www.lloyds.com/the-market/di...llinois?Name=W

Well done beatle

This may be a naive question, but is there anyway to get something akin to this in supplement form or similar gene therapy somehow somewhere else? I'm not even certain if this would work in my case where the SFN is all over the place from head to toe, though it did begin in my hands and feet and is worse there.

Same with me.

Really? Beatle, I'd love to talk more with you. Perhaps we can help (at least in form) one another. I spent yesterday trying to figure out whether mine is length dependent or not. I find the categories somewhat more porous, though clearly mine is not restricted to the legs and hands. There is no known cause in my case yet, and though it came on full force about 1/2 a year ago, in hindsight I realize that it has been developing for a few years now.

I am three years in and never thought it would last this long. Now I know I'm stuck with it as it continues to progress. My onset was sudden as well and each known cause ruled out, it's still idiopathic. I too see some signs in hindsight that I did not realize at the time but it would not have mattered anyway since there is no treatment for it.

I hope yours improves David. Some experience a reversal, even some type of remission is possible although not probable.

I'm sorry to hear that, Beatle. And thank you for your kind words. I hope so too. And I hope so for you too, despite being 3 years in. I like to think that I will improve given my relative younger age, though that does also make it more depressing, not that getting this at any age is fun and makes it easier to deal with.

I plan to post some tonight or tomorrow and would appreciate your input too. It will be about my situation and what I've done. I've significantly improved from the summertime, but that's still only in energy and every now and then some symptoms disappear and new ones appear, so I'm never sure. I can say that my energy has increased significantly, though I do have bad days. Now, I think it may be that I haven't stuck with my diet. I plan to write about that shortly.

Are you any special diet? What are you symptoms like and how did they progress, if I may ask? I do think mine is linked to my gut health, so if I hadn't drunk so much alcohol, especially beer with all that grain, and eaten so poorly, I think I could have avoided it. My GI health has been poor for many years and for many years prior. But, of course, there's no way to know for sure.

Thanks for writing. I'm glad I found this forum.

David,
I forgot to ask your age. I am 45.

I'm about 10 years your junior.

This clinical trial of VM202 in the context of diabetic neuropathy looks promising though the cohort size is fairly small; http://onlinelibrary.wiley.com/doi/1...3.186/abstract .

You can download a PDF of the full paper from the link.

Mrs. D. I take 5000 of the Methyl B-12 every day in the morning. This means I'm only getting 65 mcgs of the Methyl B-12? Didn't know it was that little. Do people ever take 50,000 every day (not that I'm doing that, just asking). Thanks much

Melody

I doubt you'd be getting that much even. Probably more like 25mcg. And remember the intestine has transcobalamin to receive the B12, and that is of finite amount and would limit absorption too.

the RDA is only 2-4 mcg, so that is still alot you get from a 5mg oral B12.

There were some studies in the past done in Japan with really high doses for MS.

I don't think an average person needs 50,000 mcg a day. It would mostly not all get absorbed, and just be eliminated in the stool.

Mrs. D. This one's for you.

Alan and I were attending one of those breakfast seminars that ask you to join their medicare advantage plan. There were LOTS of diabetics with neuropathy. All I did was mention B-12 and it has to be a certain kind of B-12, not Cyanocobalimin.

All of a sudden the presenter started asking me questions and the other people forgot about the presentation and wanted to know what they could do for their diabetic neuropathy.

Even the moderator started asking me questions. I stood up and did a presentation. Alan was in the bathroom and missed the whole thing.

There I was giving out my email address and they were all writing down stuff and asking "What's that kind of B-12 again?"

They all wrote down what I said (everything I learned from you I might add). Some of these people were in their 80's and when I asked if they did email they said "Well I have an email address but I don't know how to send one'. "But I know how to receive one".

I then took out my smart phone, asked them their email address, wrote them an email right in front of them with all the info, emailed it to them and I said 'look at your phone", or wait until you get home and go on your computer". They all looked at me like I was an angel from another planet. And all I did was share info that I got from you and these forums.

So just know you helped a lot of people today.

Love ya, Melody

Wish I could have been there to see that.
 

This just points up how common neuropathy is, though, if this happened at a gathering of people to discuss insurance. And it also points out, in all likelihood, how underdiagnosed and/or undertreated neuropathy is.

Admittedly, sometimes people don't have quite the language to describe the weird sensations/symptoms to make their physicians suspect the possibility. But, on the other hand, I greatly fault doctors for not inquiring into the possibility, or suggesting some language patients could agree/disagree with. Given how common neuropathy actually is, there should be a LOT higher index of suspicion among doctors who see gerontologically aged patients, and patients with blood sugar issues or autoimmune issues.

Hi Glenn:

I think the people who have diabetic neurpathy start out with numbness at the tips of their toes and don't notice it (who checks the tips of our toes?), maybe podiatrists are SUPPOSED to but what if they don't? and if the toes get numb but don't present with pain (and I know many people who have this type of Diabetic Neuropathy), they simply say "So I'm numb, no big deal, I can still eat that donut, I don't have any pain, all I will have is numbness" You'd be surprised at how many times I hear this among diabetics. Only the ones with severe diabetic neuropathy that presents with PAIN besides the numbness, maybe some of THEM will do whatever they can to control their blood sugar, but the rest of the gals and guys I know, well they like their food and drink. It is what it is. Thank the Lord I have come here over the years, learn what I learned from Mrs. D and you and all the people and I try and pay it forward.

And I'd like to share what just happened with Alan and his neuropathy, which (maybe it's the weather today) is driving him up the wall. He has a foot ulcer (not diabetic related but diabetes doesn't help it), but it's healing due to the fact that he wears a crow boot. But I have to clean it and bandage it and put a sock and he wears an off loading shoe in the house, he doesn't walk around in socks. If he had the crow boot on in the house, well, besides the BOOM BOOM BOOM, he can't get access to his toes (like what just happened). When he gets this kind of pain, the only thing that calms down his toes is putting Ben Gay on. It works for him.Stinks up the house, but WTH, it works for him. But....remember, I bandage his foot and put a sock over the bandage. I just walked into the room and saw he was wearing the sock but the foot looked odd. I said 'What the heck did you do? (only I didn't say heck). I took off the sock and the bandage had come off and I saw the ben gay on the front of his toes (He tries not to put in between the toes because the doctor told him that fact).

He saw my face and he said "What the h am I supposed to do I have to put the stuff on my toes and what do I do?" I said 'Hm, what would Macguyver do? " Lightbulb moment here.

I simply cleaned the ulcer (it's teeny tiny now, healing just fine), I rebandaged it, I made sure some of the gauze wrapping gently fit between the big toe so whatever he did, the whole bandage would not be affected if he took his sock off, then I got another sock, took my snipping tool, cut the top of the sock off, put the other half over his foot which left the upper toes OPEN. I then put his off loading shoe (which is a sandal) on and VOILA!!! Alan has access to his toes.

God only knows what he's going to do next but at least he has the bandage on securely and he has access to his toes

Melody

Melody

What can I say . . . "The things we do for love . . ." song comes to mind.

What you go through to help that man of yours is amazing.

Hugs of support coming your way :grouphug:

Hi there bluesfan:

Well, SOMEBODY has to do it. Might as well be me. The problem now is how to keep the bandage from coming off. I thought I had it licked with the half sock over the bandage, and putting him in that off loading shoe. But I turn around, his shoe is on the floor, I check the bandage and it's loose and not covering the foot ulcer. I immediately fixed it and he goes "You're not going to re-bandage me, I can't do this anymore'. sigh. Can't blame him, he's got neuropathy, he's tired of all this BS, I get it. But i have to make sure it's clean and it stays on. The doctor uses this Elastin (I think that's what he called it). he puts it over the gauze wrapping and makes it tight. I don't have that in my house. I just do a good bandage, making it secure, and when he wore that shoe, it stayed. But when he gets a bad neuropathy day, he can't keep his foot still and he shakes it off and that's my problem. Yeah, I know, it's his problem, but I take care of that foot and I don't want any complications. When we go out he wears that boot which is like wearing a MACHINE. But in the house, (until this ulcer is gone completely), it's better if he just sits on the couch or at the computer and not put any weight on that foot. We go every 10 days to the podiatrist who measures it with this ruler thing. Gives us a thumbs up. And the iodosorb....do you know that cost $89.00 and it's not a prescription item. Some kind of special iodine that keeps it moist or however it was explained to me. This ulcer has been the bane of his existence for over 7 years. It's all in the correct inserts and shoes. So once this ulcer is gone, he goes back to his custom molded shoes. but in the house, when he sits on the computer, his right foot is shaking. Been doing this for years to get the blood flowing into that foot. He says he's so used to it he doesn't realize he's doing it. Like a guy with Parkinson but he doesn't have that. He has Idiopathic PN. No magic pill so far right?

He's making me into an old woman and I really don't know what else to do. I have my own health issues and sometimes I can barely move. Thank god I can bring the laundry down the block and they do it all. Believe me, this is no luxury. This really helps.

Melody

the front of the foot is a very tough area to wrap. i just went through this for a few months.it would be wrapped at the wound center and unwrapped by the time i got home. the best method i found was to bandage the area affected as you were told, use medical paper tape to secure that bandage. dont use plastic tape, it doesnt breath. put the socks on the way you want them then use coflex or another cohesive wrap that stretches and sticks over the socks in front of the ulcer and another around the ankle to hold them in place. donbt stretch them too much or they will be too tight and cut off circulation. i attached a photo of it. you can get them at walgreens cvs or rite aid or other local pharmacies. it works. my socks stayed on for 24 hours until the change for the next day.