Methylcobalamine seems to working...and...
 

Seems to be a problem for me. Since I restarted with this form of B-12 I've seen a huge jump in my energy levels and a decrease in my PN symptoms. Somewhere in these forums I have a list of all the things I was taking. No time to hunt it down now but I'll be looking at that soon and will begin adding one vitamin or supplement back in at approx 2 week intervals. So, bottom line for me, it seems that I have issues with absorbing B-12 from foods and my digestive tract. This just really brought this issue home to me since I restarted the B-12.

If anyone recalls, I suddenly hit a spot where *something* I was taking was causing a major increase in symptoms. I had started several new supplements at the same time and couldn't pin down precisely what was causing the problems. So I stopped everything. And didn't restart (other than Vit-C and E that I've always taken) any of the others until I had the better form of the B-12. Also, I'm taking much more Vit-C than I've ever taken before. I've gone as high as 8000mg a day with no backlash, so to speak. :D So, now we'll see what we can see.

Now THAT is good news!!!

Mel

How much B12 are you taking?

Mary:

I know your question was to Brian, but I just wanted to share my own info on the B-12. I take 5000 mgs sub-lingually every morning, on an empty stomach.

It did the trick. I'm one of the lucky ones. It did nothing for my husband but he's not a diabetic, and in my opinion, he wasn't on it long enough to say "oh this is not working, you take it". But I can't argue with him. So I take it and it does the trick for me.

Sure, I get flare-ups but only when I get stressed. On the average, it did the trick for my burning.

Melody

Thanks Melody - I'm currently taking 1000 2X a day and I am thinking about bumping up to the 5000. Do you also take a magnesium supplement?

Absolutely, and you can thank Mrs. Doubtfire for that.

She said on these boards:

Melody: Magnesium, Magnesium, Magnesium.

so Melody learned, learned learned.


lol

I have been taking magnesium, but apparently the wrong kind - magnesium oxide (who knew!!). I'm planning a trip to Whole Foods to get the 5000 B12 and better magnesium.

I'm taking 5000mcg a day. That's the same amount I was taking of the Cyanocobalamine. Which apparently wasn't doing me much good. Certainly not enough. I also take a Super B-Complex with that. I take it on an empty stomach as the good people here instruct. :)

I'll tell you, this board has been a lifesaver for me. When I first found the board it was about 2:00 in the morning, I was up because of my pain (it was soooo bad!) and sitting here crying. Since finding this board and using the information Rose and other's have given me my pain has decreased by about 90% overall. I no longer have trouble getting to sleep because of the pain. I still have a certain level of tingling, numbness and a bit of the burning sensation but nothing like what I was having!

when you take
 

massive amounts of Vit C you can acidify the urine. Urine is supposed to be
a little alkaline. By changing the pH of the urine, you can change the
excretion of drugs, so keep that in mind.

Your doctor should know this Vit C intake, because it can skew some blood tests, esp blood sugar.

There was a paper on our health news forum which went off line sadly.
But it showed increased stomach cancer when Vit C was taken in high amounts with food.
So it recommended using it only on an empty stomach. The Vit C reacts with nitrosamines to
create carcinogenic compounds. I wish I had copied the story...and have since not found it
again.

Hi. That is good news. I also heard that when repairing sometimes symptoms can feel worse. I don't know if that is true. I thought too much vitamin c was bad and can make you lack something like iron. This may be so wrong so just fyi. Keep feeling better

Yes, I always tell my doc what I'm taking and how much. I don't take that much Vit-C on a daily basis. I *have* taken that much from time to time depending on how I was feeling: I was exposed to a rather nasty cold. I never did get sick so if it was pure dumb luck or the Vit-C I couldn't tell you.

Changes in urine PH are red flags for lab results. But if one's urine is too alkaline it can also be an indicator of a urinary tract infection. Certain types of stones are also more prone to forming in alkaline urine. The treatment include acidifying the urine. And in reverse some types are stones are more prone to forming in acidic urine.

I found this link very helpful in explaining all this in terms I think most anyone can understand.

http://rnceus.com/ua/uaph.html

Wonderful news, it's great to a read post like yours :) good on you.

Brian :)

daniella, i think it depends on the individual, in my case i can definitely say that my symptoms were worse at times whilst healing, but then again Melody & Jarrett report the opposite.

Brian :)

HI.

I truly believe that the only reason I had this great experience with the Methyl B-12 was that I had just had that neuropathy flare-up (becasue the podiatrist used that vibrating planing tool on my nails). I had never had a single case of burning, tingling, buzzing (ANYTHING), before I had my toes done.

I had been diagnosed previously with the beginning of neuropathy in the toes because the doctor at Cornell did the tuning fork on me and the tips of my toes were numb. I had no idea about this because how would a person discover that they have numb toe tips?? I mean, who goes around testing the tips of their toes?? I know I never did.

So when she told me "you have the beginning of neuropathy" I immediately said "you mean I have what Alan has?" and she said "yeah, but in diabetics it mostly presents as numbness, just keep your sugar under as tight control as you can". Which is what I had been doing, but don't forget I'm a diabetic for 20 years, and only by going to Cornell did I get my act together.

So when I had that first experience at the podiatrist where every nerve in my foot WOKE UP, and he said: "Oh you have feeling, that's good, that's good," I wanted to kick him upside his head because my feet were buzzing and I'm thinking "what the heck good is this?"

That night I buzzed, burned, ALL THE STUFF!!!. I went on these boards, learned about methyl B-12, purchased it from iherb (starting at 1000), found out in about a week that I could do the 5000 and I've been on 5000 since then.

And yeah, I do get the flare-ups but no where near that night with the buzzing, tingling, burning, YUCK!!!!

I will take this Methyl until I'm gone from this planet.


Melody

J
 

I remember the middle of the nights as well,HEY is anybody here,I was
and i was crying as well...Things aren't perfect but getting better. I
am so glad for you. Now if I could get those 400 hhundred dollor rubber
hand made in Germany,commpression hoses on and off,I might smile
a little more...But the nurse said well she has to figure out something.
I figure she could come over pulll them on in the morning,and come over
at night so I get them off,then hand wash them..I just don't have the
darn upper body stregth,and that's a lot of money...TTTTTThanks
for leting me vent..

I really am happy,that Mrs. D pops up and boom comes up the answers
to so many Questions...Also i've been gone did Rosre retire,run away
from home..Just asking??? Sue

Thanks Brian. I think that is the furstration were all different. A lot of what works for one may not for another. I guess when I'm in a lot of pain I try to say well maybe its repairing. Its probably just a mind game but gets me through and helps to hold to hope. I do feel though I should be repaired with the level of pain sometimes.
Sue I too wonder where Rose has been. I hope ok and just busy.
Melody I'm so glad you have found such benefits from b12. You should tell your story on the vitamin board. Others have too.

I did go through some worsening of symptoms but never for too long. A week and a half if I remember correctly at it's worst until just before I stopped taking everything. That last few weeks was horrible. That's what told me that something wasn't right. It just kept getting worse and worse. It took about a week for everything to go back to what it had been before that last few weeks.

It's been a bit over a week and I'm feeling wonderful! Pain levels have changed yet again from what it was just prior to restarting the *proper* form of B-12 for me. I knew I needed to try that form or just tough out the other form of B-12. But I needed to do *something* because the pain was again getting gradually worse. Thank goodness it seems to be working wonderfully for me! :)

Hi jarrett
 

I remember your previous post as im sure I replied to it as I also suffer the same problem,ie that some supplements definatley make the neuropathy much worse. I still cannot get to the bottom of why supplements like acetyl l carnitine/ calcium and magnesium / thiamine and benfotiamine (taken separately of course) bring on the numbness/altered sensations when they are meant to help the neuropathy, it isn't a question of the symptoms being a sign of the neuropathy getting better either unfortunately,they really do make it worse, I have gone on and off these supplements quite a few times to make sure it wasn't just a coincidence that the sensations got worse,they really do affect it. Mrsd mentioned the my electrolytes may be out of balance but I am not sure how to go about getting these checked. I would be so grateful if anyone could shed any light as to maybe why these supplements seem to be aggravating the symptoms.... One thing I do wonder about is the fact that I may have axonal damage by the looks of things and would this mean that supplements would not help this type of neuropathy....

Its excellent news that the b12 has worked well for you and I hope it continues to help you :)

Thanks! Me too!!! :D

Yes! I recall your posts too because it was sort of an 'ah-ha!' moment for me. It *wasn't* just all in my head! Nice to know I'm not alone. I, too, would like to know more about the electrolyte issues and why it seemed that one or some of the supplements I was using was making things worse.

Great News
 

Anything that is helping you matey is really good news! I hope you continue to improve.

How much Magnesium?
 

I do take the high doses of B-:confused12, but how much Magnesium are you taking, or what is recommended?
Pat
:confused:

you can learn all the details about magnesium
 

here:

http://neurotalk.psychcentral.com/showthread.php?t=1138

Currently, I'm not taking Mag. I may add that back in as I go along. I'm using Slow-Mag and if I remember correctly I was taking two tablets a day, spaced apart and taken with food.

You might check the stickies at the top of this forum. The first one is where you need to look. Also, MrsD or dahlek is up on all this stuff. I wish it was easier to search the forums so I could find the post I made when I listed everything I was talking.

Also, check out roses site. She's the one that got me started on the B-12.
http://roseannster.googlepages.com/home

Also, posted by MrsD in the that same sticky forum:

Good for you, Rose...for putting your info on Google!

I found the cached archive for the previous sticky on the "drugs used for PN"

http://216.239.51.104/search?q=cache...&ct=clnk&cd=21

Here is a copy of this list too:
1) OTC--vitamins/nutrient interventions
Quote:
Known to help:

B12 at least 1mg (1000mcg) per day (methylcobalamin preferred) but some do better on 5mg.

Thiamine (B1) at least 200mg/day..but some here have used 500mg/day in divided doses. This is inexpensive and benign. Especially useful if you drink, used to drink or have alcoholism genes in the family tree. If you use diuretics for blood pressure, you deplete thiamine so supplements are a must then.

Omega-3 fatty acids... fish oil especially at least 2grm per day, and more if you choose. Help to maintain the myelin of the nerves and support the nerve membranes/action during transmission. Works in conjunction with B12.

Alpha Lipoic acid... this can be found now in the R- version, and can be used in lower doses because the R is more effective. Most ALA therapies use high dose-- and this can be expensive. ALA also can affect blood sugar--lowers it-- so be careful if you are a diabetic on medication.

Acetyl-l-carnitine is also useful...but large doses of a gram a day or more may be needed. This is expensive as well.

Inositol is newly being looked at specifically for diabetic neuropathies. Diabetics lose alot of this B-relative thru the urine for some unknown reason, and supplementing with it restores lost functions. You need at least 1gram a day--but this is inexpensive --if purchased from iherb in powder form-- mixes tastelessly into juice. D-chiro-inositol is being trialed as a drug to patent for this purpose, presently.

Support nutrients:

P5P--pyridoxal-5-phospate is the active form of B6 and helps with nerve issues and supports B12 metabolism-- 50mg/day typical

Folic acid or the new methylfolate-- Ditto 800mcg/day typical

Magnesium--- for those with poor diets who do not get this valuable mineral from foods-- and who are depleted by certain drugs like hormones, diuretics, some antibiotics and hormone replacement therapies. 200-300mg of elemental magnesium per day typical.

Ancillary supplements:
Chromium to improve carbohydrate metabolism/insulin actions max 200mcg/day

Zinc and selenium to enhance thyroid hormone T4 conversion in tissues.
Zinc=up to 30mg/day selenium max 200mcg/day Some drugs deplete zinc, esp ACE inhibitors used for blood pressure

Antioxidants to quench free radical damage to nerves/fatty tissue--
green tea/yerba mate/ grapeseed extract/ Vits A C and E, curcumin

Bcomplex.... in general the other B's have separate functions, so using them is a good idea. B2 for example activates conversion of pyridoxine in the body if you do not use P5P.
2) Drugs used:
Quote:
Drugs for PN...

AEDs (anti-seizure drugs)
Tegretol/Trileptal both drugs are cousins and similar in action
Dilantin (phenytoin)
Topamax --hard to tolerate
Zonegran
Lamictal
Neurontin/Lyrica
Keppra
Gabatril


Prescription Vitamin preparations

Mentax (the newest and best--- methylfolate, P5P, and methylcobalamin)
Folgard RX


Antidepressants

Elavil (amitriptyline)-- a tricyclic
Pamelor (nortriptyline)-- a tricyclic
Prozac, Lexapro, Celexa, Zoloft, Paxil --- SSRIs
Effexor, Cymbalta -- some norepinephrine reuptake actions
Desyrel (trazadone) mostly for sleep issues

Opiates
Oxycodone (Oxycontin,Percocet)
Morphine (Avinza, MsContin, Kadian)
Duragesic patches (fentanyl)
Vicodin, Lortab Norco (hydrocodone with tylenol)
Codeine (Tylenol with Codeine)
Methadone
Dilaudid (hydromorphone)

NonOpiates
Darvon/Darvocet
Talwin/Talacen
NSAIDs (Ibuprofen, naproxen, Celebrex, Indocin)
Tylenol
Ultram (tramadol)
AlkaSeltzer (with aspirin)

Anti-diabetic drugs for insulin resistance or type II diabetes

Metformin (Glucophage)
Actos
Avandia
Glypizide
Glyburide
Prandin

Benzodiazepines (AntiAnxiety/muscle relaxant)

Klonopin (clonazepam)
Xanax (alprazolam)
Ativan (lorazepam)
Valium (diazepam) Valium and Klonopin are the most commonly used for muscle issues/ and also have some anti-seizure effects

Topical agents

Lidoderm patches-- these are very nice if placed properly
Lidocaine ointment
Emla cream (now called LMX 5%)
compounded ointments with Ketamine/clonidine/ketoprofen/gabapentin etc
Biofreeze (this is very cooling, and also anti-inflammatory)
Capsacin cream (most people cannot tolerate the burning from this, but others like it)

Muscle relaxants (non benzo)

Flexeril (cyclobenzaprine)-- most commonly tried
Soma (carisoprol)-- abusable
Robaxin -- old timer not used much anymore
Norflex (orphenadrine)
Skelaxin-- very sedating, and often used for resistant patients who don't respond well
Baclofen (Lioresal)--mostly for spasticity issues

Dopamine agonists (for restless legs/movement disorder)

Mirapex
Sinemet
Requip

Misc:
Stadol nasal-- very abusable
levothyroxine--T4 (for thyroid replacement-- if low), liothyronine (T3)
antihistamines for skin burning (Benadryl/Claritin/Zyrtec/Atarax/Allegra) Benadryl and Claritin are OTC
Singulair (leukotriene B4 antagonist for allergic issues)

Sorry I've been missing for a while. Happy to have been missed. :)

OMGosh. Now that I've quickly read through this thread, I'm so tired I can't remember what I read. :o

One thing I remember is: please don't forget that in the case of B12 the process of repairs can be tough (up and down, weird, etc.).

Please remind me of points I have failed to address.

rose

the cached link
 

in the post quoted above no longer works. All of the cached posts links from OBT are dead now.

Jarrett could you edit that list and remove the cached link? Also put the list in quote? [quote] list in between /quote (with brackets)
I cannot show you exactly because it quotes the quote command!
I'd appreciate it.

(Also I did not put IVIG on that list, at the time.)

Hi Rose
 

Do you know if B12 helps in axon regeneration or does it only help the myelin sheath?

One or both, depending on the damage.

rose

[QUOTE=mrsd;166621]in the post quoted above no longer works. All of the cached posts links from OBT are dead now.

Jarrett could you edit that list and remove the cached link? Also put the list in quote? It's been too long. It won't allow me to edit the post now. And I don't feel it's anything dire enough to bother a moderator with. At least you noted the things that have changed. :(