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John (Plymouth, Ma) on 08/18/2011
3 out of 5 stars

Looking for Connie from Utah...

Hello Connie,

You gave me a remedy for my Periphal Neuropathy... I am now up to 10,000 mcgs of B-12 and still have pins and needles and severe cramps in the middle of the night in my calves... My legs are cold from the knees down and we're in a heat wave in August.... It seemed to subside initially, but the full neuropathy is still there... I have been doing it for about 3 weeks.. Is this something that may take months to resolve? Any feedback will be greatly appreciated... If you recall I believe that hep-c has caused this neuropathy...

Thank you...

Replied By Connie (Slc, Ut) on 08/19/2011

Hi John P. ; I truly hoped that you had knocked that neuropathy out of the park right away, but it usually does take time to heal nerve inflammation. It took about 8 mnths. For me , 3 1/2 yrs. Ago. Then, when I stopped taking it daily, and regressed, it took several months to again heal the nerves. Even after restarting B12, I still regressed during the first month. Now in my 6th month, I have a small, shallow numb area on the heal of my left foot, and it is recovering feeling. The area around it is sensitive and tingly. This means that time is necessary. Also, it means that we're going to have to get more technical with your process.

Firstly, I've read that oftentimes with liver trouble, potassium could go low. That can cause some cramping and pain. If you are not taking any potassium sparing meds. , such as some certain diuretics or anti-hypertensives, then consider increasing potassium foods. ( careful with the sweet ones, they can cause pain). Consider getting a copy of blood test and observe electrolytes. ( I find I feel best when K is about 4.5 mEq/L). Fresh vegetable juices are great, carrot, celery, and added greens. Smoothies are also a great option, as are homemade broths with the retained liquid from the veg.

As I see that you have expressed a sensitivity to acids, I agree that reducing them is a good way to alleviate pain. The nerves are exposed, and even beneficial acids can cause pain now. Although citric acid is natural and good, it is added to so many foods as a preservative, that it is easy to get too much. Even ascorbic acid can cause pain. I don't recommend total avoidance, but some reduction. I recommend a food type B-complex. (new chapter). It's expensive, but less is needed. I've found that it doesn't cause pain when taken with meals at 1/2 to 1 tablet. B1 and B6 are good for nerves at lower dosages, ( personal opinion ). Also, the fat soluble vitamins, A and D, can be difficult to metabolize when there is liver trouble, so I recommend getting them from food rather than supplements. Good Wishes.

Replied By John (Plymouth, Ma) on 08/19/2011

Hi Connie,

ThanKs for the reply... I'm wondering what amount of B-12 are you currently taking? I have gotten up to 10, 000mcgs... I went very slow for obvious reasons... I have only been on this for less than a month... If it took you 6 months, I guess it will not be overnight with me either... I tried taking lecithin and it thinned my blood out (assumption) and I have gotten very cold as of today... I got a commendation to rub coconut oil on my body... Don't know if you've heard of this... I may try it on a small part of my leg for starters and see what happens...

I am extremely grateful for your advice and your quick response...

God bless, John

Replied By Connie (Slc, Ut) on 08/20/2011

Hi John P. ; A few days ago, I asked myself ; What has B12 not done for you? My hair is still 40% gray, and I haven't yet written that " hit song". Each day is a bit better, but it's so slow for me. When the neuropathy was at its worst, I began with a litany of supplements to cure it , but I was using so many at the same time , I couldn't discern what was working. I became confused. My studio became an apothecary. When I look back, I realize that there were so many obvious clues for me, but I was distracted with pain and fear, and I had spent my life on denial of my instincts. I've got a way to go with that. What I'm learning from you is that you are going about your healing process logically and methodically. I appreciate this. Although B12 is not the only one thing , Its pretty dang'd powerful. There have been and there are currently tests being done for people with MS and early ALS to at least improve their status. The amounts being used are 50 mgs. Daily by injection. This means that there could be a wide variance in an individual's needs. I've tried a wide variety of amounts, and I'm still somewhere between 2500 - 5000 mcgs. Daily now.

I've " haunted" some forums, and it appears that other people are trying a wide variety of amounts, but, most seem to be settling in the 1000 - 5000 mcg. Range. Some are lower, and some are extrordinarily higher. I have been influenced by this information, so I need to be mindful of it when making suggestions. Another thing I am noticing about B12 is that it is raising my body temperature and I am feeling warmer. ( I've read this and now I'm seeing it. I'm at 98. 2 degrees now). I believe it will help with cold legs eventually. I also believe that massaging legs and feet with oils can be wonderful. (my skin is dry, so I use castor oil). I've used various salves for pain with good effects. Since you have coldness, I would recommend that warming spices be added to your salve, such as Ginger, and Cayenne. Ginger has been recommended to raise body temperature and improve circulation. ( internally and transdermally) Best to You.

Replied By John P. (Plymouth, Ma) on 08/23/2011

Hi Connie, Thanks for the great suggestions.... I currently rub my legs with magnesium oil fro "Ancient Minerals", however I don't know if it has been working as I have been doing it for only 2 weeks... No results... Yet... Rubbing castor oil may be a good idea as it is highly recommended for hep-c in a pack against ones liver for an hour or so per day via Edgar Casey and many other current people... So transdermally it may help significantly... I will try it on just a small part of one leg and see if I get any kind of reaction with my hep-c.... I am so cautious with adding things as I have had bad reactions to many things... I feel this is because of my liver..

Thank you again so very much, John P.

Replied By Janet (Kendal, U.k) on 08/24/2011

MSM:-(Methylsulphonylmethane. ) It's available in tablet or crystal form, the crystals are said to be quicker absorbed. Health food shops sell it or available online. It, s sold usually to supportjoint comfort and mobility. We googled what are the health benefits of MSM for diabetes, and came up with a great page explaining all about it. Usage , dosage, etc....

Replied By Connie (Slc, Ut) on 08/24/2011

Hi John P. ; I do hope you're having some improvement by now with the B12. Have your symptoms changed at all? Oftentimes as nerves heal, numbness, tingling, and pain can alternately diminish and return temporarily. Temperature sensitivity can also shift. Although I've tried numerous subtances for neuropathy, the B12 has worked best far and away. But this only means that it worked for my case. (though there are many case studies to support B12's efficacy with neuropathy). Still, the folks here are offering good suggestions as these supplements also have an excellent track record for treating nerve injury. I also welcome suggestions because someone may just pop us the right answer!

I see you are trying transdermal applications. It still surprises me how powerful they are. In fact, I cringe when I recall that I've coated my hands with paints that were loaded with heavy metals. Then I would use nasty solvents to remove them. Now I use gloves. But I do use the solvent, DMSO with some transdermal applications. I've added 4 (20mg) B12 lozenges, crushed with a mortar and pestle, to a 1 oz. Dark glass dropper bottle, mostly filled with DMSO. I shake it vigorously for a few minutes until dissolved. This is an approximate recipe developed by Dr. Gregg. I've used this off and on for several years with good effects. I buy the DMSO and supplies from a chemical shop. The mixture is a bit sticky, and the flavorings make for an unusual scent, but it did help me. I would often use it on my left hand which had become frighteningly stiff and numb. I'm now trying it on the small numb spot on my heel to see if it speeds recovery. Castor oil is also a great medium to use either alone or with added essential oils, some good warming ones could be : Oil of Oregano, Cinnamon Oil, Black Pepper Oil, and Ginger Oil. Cayenne is very warm, but I have only seen it as a powder or extract. There are some ready-made salves, but some are with cooling mints. I do have one that is warm, it is called Badger sore muscle rub. It is mild. Good Wishes.

Replied By John (Plymouth, Ma) on 08/25/2011

Hi Connie, You sure are certainly informed with regard to P.N. And many other things. I cannot thank you enough for your time and support. You are heaven sent. You will indeed get your hit record.

Regarding the magic bullet for P.N. I'm going to give benefotiamine a try, if all else fails. I have researched it throughly. It's a man made form of Vitamin B-1 (Thiamine).

Again, NO ONE was put on Earth to suffer. We all are here to thrive.

Bless you.

Replied By Kelly (Cambridge, Ma) on 08/26/2011

John - Have you tried Alpha Lipoic Acid capsules? It's worked wonders for me and scores of others.

Replied By John (Plymouth, Ma) on 08/28/2011

Kelley, Yes I have tried Alpha Lipoic Acid, but for another issue... It did not agree with me... It made my heart race terribly... Don't know why... That was about 10 years ago.. I have recently found out that by eating raw potatoes you can get your Alpha Lipoic Acid... I don't know what the strength would be though... It is something I will certainly consider...

Thank you very much for your concern and time posting you recommendation... It is greatly appreciated...

This too will pass.......

Bless you

Replied By Kate (Avon, Ct, Usa) on 10/21/2011

Hi John,

I can feel your pain.. Literally. I've been suffering from horrific pain in my feet for almost 3 years now. As of the past few weeks, it's began to spread up my legs and I am experiencing stabbing sensations and cramping as well(grrrrr). I have a long history with Lyme Disease and co-infections so since I test negative for literally everything else the docs can come up with, it seems Lyme is the origin.

I have been on Neurontin for as long as Iv'e had this problem and about 6-7 months ago began a strict regimin of ALA, Benfothiamine (600 a day), Acetyl-Carnatine and more. I seemed to hold for a while but now things are exploding and I have no idea why. I have been taking 25mg B12 injection 3x's a week for about 4 weeks now. To no avail (sigh). About 2 weeks ago I decdied to give up carbohydrates in another desperate attempt to stop this incredible pain.

I hope and pray you find relief asap as so many posting here have. I have learned a lot simply by stumbling on this thread so I thank you for that.

A great sight with a TON of info on supplements, etc for neuropathy is "Neuro-talk. " Find the peripheral neuropathy section.. there is a tremendous amount of information to be had and much like here, a tremendous amount of support.

Be well, Kate

Replied By Monique (Elllington, Ct) on 10/26/2011

Kate, you are not alone. I've had terrible Neoropathy in both feet for 4 1/2 years. Its a terrible way to live. I'm trying to research cures and came across this site. I even had a Spinal Cord Stimulator trial implanted but it didn't work for me. Supposedly though, it helps lots of people. I haven't read many people on this site who have tried it. Also, I guess there is a nerve root stimulator too which is similar and works for 2 out of three people. I went to the Lahey Clininc in Burlington, MA for my SCS. It's something you cna look into. I'm at a point I don't know what else to try, has anyone had luck with acupuncture? I tried it years ago with no sucess but I'm going to try again. I have a 7 and 8 year old to raise and can't go on feeling like I do. I have a high tolerance for pain but it's even more than I can take now. Good luck yo you. Let me know if you find anything out.

Monique

Replied By Al (Alvena, Sk., Canada) on 09/16/2012

Kate, I have noticed that if the pain is less when you wake up in the morning that it is often an indication of too large a dosage of something and so would reduce one item at a time until I found the culprit and then put everything else back to normal dose and reduce or eliminate the one that caused the problem. When things get worse we need to experiment a bit. Al

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