Hi Mrs. D,

I've been away from this site of almost 8 months now but find myself needing to make my way back again. You gave me such wonderful support and advice (page 5 of this thread) that you are the only one I can think of to turn to.

I've continued to treat aggressively for lyme disease and all the co infections(tested positive for lyme, bartonella, babesia) and for some time now, for the most part, i've been able to maintain a painfree life due to the neurontin. In April I actually backed off 600 mg's to 3000 vs 3600 (not much to some but it gave me such hope!). I do have breakthrough periods but i'm able to cope with them no problem. Until recently. Here's where i'm at:

I still take all the supplements you advise w/ some minor tweaks in mg's.

I just had a repeat skin biopsy(first one was in 2006 showed abnormal and then after 3 mos of IVIG showed normal. *** I was NOT having any painful neuropathy at ALL and was mainly using it for experimental LYME treatment so the biopsy improvement never made sense to me***)

Repeat biopsy done 8/11 is NORMAL??? Yet, for the past 2.5 years i've had intense burning pain in my feet. HOW do you get an ABNORMAL repsonse when you have zero pain/symptoms and a NORMAL repsonse when you're in agony?

As of the past 8 weeks or so, it's spreading. My face, mouth, lips and ankles, calves and legs are burning. My back feels like I'm getting electrical jabs in it. The past week in particular has been horrible. I feel like i'm a rotissere chicken:eek:

The neuro said we may have just taken the biopsy from parts of the skin that hadn't been affected but that seems impossible! They were taken almost on top of the old biopsies(visible scars). Obvioiusly it has to be a FALSE negative?

I have been tested for everything you've mentioned to others on this forum, everything. And with the exception of lyme (and hosimito antibodies but "no symptoms" yet), everything is negative!

Two factors you should know..

All this time I THOUGHT I was taking a B12 supplement and I wasn't! I don't know how this happened but if you saw my pill case...56 pills in all, every day..it gets confusing, especially when you're sick(still battling lyme stuff). Anyway, i was suppose to be taking the shots but we had complications but I assumed I was covered with the orals(which I wasn't actually taking). I do take the benfo and a b6. Don't know how I missed the B12.

Second, my dad has neuropathy . For him it started 18 years ago and for most of that time he just had a couple of numb toes. It then turned to burning but never painful. Now, after chemo, his feet are bad..incredibly numb. But, he doesn't have problems beyond his feet. He has also had lyme, several times and has had 4 back surgeries.

I asked my neuro if this could be hereditary and he said no. That hereditary is generally autonomic and not small fiber but I'm scared. My pain is far worse then my dads and has progressed much, much faster then his. My intermittent tingling began when i was 28 (1998-I was told it was lyme stuff) then left for years only to come back as mild tingling in late 2008. I then woke up with SEVERE burning one day in 2009 and it's never gone away again.

I am not on any meds that can cause neuropathy.

My blood markers are ALL normal. This includes celiac(even had biopsies), sjornes, cmt, auttoimmune markers, diabetes, full neuropathy panel, etc..

My lyme doc says that 70% of people with chronic lyme(took years for them to finally figure it out) have neuropathy. I am doing everything I can and where a week ago I thought I might be able ot back off more neurontin..I'm now Im suddenly on fire around the clock(and all over).

I can't take hot baths. I cant jump, dance, run or skip with my kids. I can't even take YOGA anymore because tho I have no pain while doing these things, the next day and for several days later, the pain breaks through(prior to this latest development). What is happening to my life???

No clue what to do...

Thanks for reading:(
Kate

I was wondering why I feel anxious and shaky after I take Cyanocobalamin, but I do not get that bad effect when I take Methylcobalamin? Both tablets are the same dose (1,000 mg).

I have both forms of B-12 in my house. The Cyanocobalamin tablet (Nature's Bounty) dissolves very fast under my tongue, and then for several hours afterwards I feel rather anxious and shaky. Eventually the feeling dissipates but I don't like it. It reminds me of how I used to feel when I got allergy shots laced with epinephrine, or how I feel if I have caffeine. I have tried it several times, both on an empty stomach and not. It's always the same effect.

The Methylcobalamin (NOW, Jarrow -- I have both) has absolutely no side effect for me, and I feel fine after dissolving that under my tongue. (The Jarrow one takes a really long time to dissolve).

Any idea why one would make me feel anxious and the other doesn't? I know that the Methyl variety is absorbed better by the body, but that's about all I know about the difference between the two.

Thank you!

If you want to...PM me your medication list. Some antibiotics deplete nutrients and some CAUSE PN.

Your dad might benefit from Acetyl carnitine...which may help the chemo PN. It works better, taken while on the chemo, but it is worth a try. Start at 500mg a day and increase slowly if needed to 2 grams or so, in divided doses for him.

You really should get a Vit D test, and B12 test to see where you are with these.

Burning pain can also be from food intolerances. Some foods also release histamine which makes for burning. I get burning from potatoes of all things!

If you were on oral antibiotics for a long time, I'd try some Kefir.
I just was very sick with a GI thing, and a friend suggested this to me...and I'm amazed at how it corrected me! I feel better ALL over too! It has 12 organisms in it to re-establish normal flora in the GI tract. I've just finished my first quart, Lifeway brand, and really recommend it now for anyone recuperating from illness. It is a fermented yogurt drink. And at first when I was so nauseated it was tough, so I diluted it a bit.

I intend to have at least 3 oz a day now FOREVER! That is how good it has been for me! ( I use the unflavored one as the others have more sugar which I try to avoid).

http://www.lifeway.net/

We found this in our local Kroger's!

I have Hashimoto's. Have you had your thyroid levels tested (TSH, free T4, T3, etc?) If not, please get those tested. You could need thyroid supplementation. Often if you have antibodies but no symptoms, you could still benefit from thyroid supplementation. Some people do well on Synthroid and some do better on "natural" dessicated thyroid.

I hope you find the answer to your questions and that you feel better soon and overcome your problems! ((HUGS!!!!))

Some people do not do well on the cyano...something to do with cleaving off the cyanide portion.
Cyano has to be methylated in the body to methylB12 before our enzymes can use it properly.

You can chew up the Jarrow and swallow..just do it on an empty stomach.
I switched to Puritan's Pride...the tablets are finer, smaller and easier on the mouth. In fact they pulverize in the bottle and I save the powder and take that too!

THANK YOU for your hugs. I have had my hormoes tested and they are all fine. They get tested every 4 months. I have asked about trying supplementation for it but none of my docs(conventional and alternative) think it's necessary. Maybe I should push for it? *sigh* I dont know.

Kate

Yes, Kefir is a staple in my home in addition to 3 other type of probiotics. I have never seen a correlation to any food either. I did just go back on antibiotics(I take small week breaks at times) so my doc thinks it could be a lyme "flare." I just don't know what to think. I start and stop all the time and have never exploded with all over pain. I feel it's getting worse.

Have you any knowledge of the skin biopsy testing? Can it be wrong??

Last I was tested, my B12 (it's beena while though) was around 450 and VD was fine. I still take 50,00 of VD a week regardless.

From your experience, does this sound like it could be hereditary? My dad is fine, he just shruggs it off and moves along. He is stubborn and refuses to take any of the supplements I tell him about. He's not in pain so he just doesn't want to give it any attention(Grrr!). I mentioned him to you from a hereditary standpoint..wondering if you knew anything about it..

I will PM you my list, but I caution you..it's LONG!

Thanks,
Kate

really dumb question
 

I'm a new member and can't figure out how to post a question except to reply to one. Can someone plz tell me? I also want to make sure I'll be notified when a reply is posted. :confused:

I'd send Glenn a PM and ask him. He talks to his expert doctors about all the tests, and he is very informed about them.

I do know that I've seen him post here that some doctors do not use the punch biopsy because they don't "trust" it .
I think but do not quote me, that he mentioned Mayo as one place that doesn't like the punch biopsy yet.

And it is true, it is not cast in stone... it is rather new, and needs good interpretation etc.

You say that your thyroid hormones are fine, but if your TSH is greater than 3.0, you have a problem. Some labs say that anything under 5.0 is normal. But several years ago the thinking shifted on this, and a lot of labs and doctors changed their thinking, and now prescribe thyroid meds for anyone with a TSH higher than 3.0

Personally myself -- if my TSH goes above 2.0 I begin to feel awful.

So look at your blood tests and look at the numbers, just to be sure.

I have read that taking Selenium can actually lower or eliminate thyroid antibodies. I haven't done this myself because right now I don't want to mess with things as my thyroid is rather stable. But it's something to ask your doctors about. (As if you need another pill to take).


BTW, you say that your B-12 is 450. From what I have learned on this message board and in general on the web, 500 is the minimum it should be, or higher. Apparently it cannot get "too high." Many people here know more than I do about B-12, but I think they'd say the same thing (please correct me if I'm wrong, guys).

Thanks, Mrs. D. I appreciate the advice on chewing the B-12. It takes SO LONG for it to dissolve!

Do you think that my reaction to the cyano B-12 has any relationship to the way I react to caffeine and other stimulants? I've been trying to figure out why, over the past 10 years, I have become intolerant to caffeine and stimulant drugs like Sudafed. I just can't tolerate more than a tiny tiny amount of caffeine. A cup of coffee practically gives me a panic attack....so much anxiety. I have asked my doctors about this but they have no idea. I used to be able to drink coffee and take Sudafed, but not anymore. It's perplexing and makes me think very carefully about medications.

I really don't think your reaction is like caffeine.

When doctors test people under the tongue with substances they cannot tolerate...the do get reactions. (this practice is not accepted by all doctors however).

But the cyano is what is triggering you, not the cobalamin part IMO.

Try swallowing instead of under the tongue. There may be no reaction that way.

Hi and welcome

you do a new thread the same way as a reply, except you just go to the forum you want to make it in and then you will see NEW THREAD near the top left of the page so for example this forum
http://neurotalk.psychcentral.com/forum20.html

look for the NEW Thread button, click, type in the box, and submit
hth :)

I am sorry I missed that post! :o

When I am posting, sometimes they don't show up quickly for me. I guess I have to empty my cached pages now!

--edit to say--I just emptied my cache.... and it crashed FireFox!

But I assume I am good to go now, at least for a while! ;)

Thanks for the advice.

I'm not sure if my doctor will prescribe any B-12 shots for me when I see her next month after getting re-tested. I was worried that the shots might cause a severe anxiety reaction like the cyano. But based on what you said, it seems that it probably wouldn't. It will be interesting to see whether the oral supplementation I've been doing for the past month (1.5 months when I get the test in mid-Oct) will show any improvement.

I plan to stop taking all my B vitamins one week before getting my blood drawn for the test. Does that sound about right?

Yes, one week off of them should do it.

Arrived at this thread via tangent...
 

Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.

Hi Kate:

I just took this excerpt from your posting.

"I do take the benfo and a b6."

I was always under the impression that people with neuropathy should NEVER take B-6

Mrs. D ??????

Melody
"

Some B6 is necessary. Extremely high doses in the gram range for a long time can cause a neuropathy. (but that was using pyridoxine, which is not active).

Very low B6 (a deficiency) also causes neuropathy.

This poster, Mel, is using medications that deplete B6, so her need is greater than those not using those medications.

See why I ask questions?
Because today I learned something new....from YOU

Thanks so much.

Take care

Melody

Hi, I started taking 5000 of the Methyl B-12 over 2 years ago. Best thing I ever did for my neuropathy. I now take it about 3 times a week.

Hope it works for you the same way it worked for me.

Take care

Melody

I have also been suffering from capsilitus in my two big toes for the past 8 weeks! (Diagnosed via an MRI). I wore some new shoes (flats, with my orthotics -- go figure!!!) and apparently that caused it (never had it ever before). The shoes looked sensible and good (cute maryjanes made by Aetrex) but for some reason they made my big toes hurt after wearing them for only a couple of days for a few hours each day. The whole thing is really strange. My podiatrist doesn't know why it happened.

Now I have to wonder if my sloooooow healing of the capsilitus is due to B-12 deficiency. (I know for sure it's not gout -- I don't have gout). I'm getting very impatient from sitting/lying around for 8 weeks waiting for my stupid toes to stop hurting (left is worse than the right), and am considering the cortisone shots. Hearing that the shots worked for you is encouraging to me. I need to start exercising again, and this inability to walk well has really been annoying. I can only wear one pair of shoes -- my sneakers with my orthotics! Everything else hurts my big toe, even my wooly slippers which are usually very comfortable! It was so embarrassing recently to go to a professional meeting all dressed up, but wearing my dirty old sneakers, limping around.

Like you, I eat a well-rounded sensible diet. Unlike you, I'm about 15 pounds overweight. But anyway, my Vitamin D was in the toilet as well a few years ago. I now take 4,000 IU daily and my level is around 50 now. Interestingly, my 15-year-old daughter had a blood test recently and we found that her vitamin D level was 35. I need to talk to her pediatrician to see if she should also be taking a supplement. She eats a lot of dairy and gets sun and is healthy except for some anxiety issues (the reason for the blood test) -- no reason for her to be borderline deficient!!! I think that everyone should have their Vit D and B vitamins checked. It's so important!

Good for your for refusing the Lyrica. A neurologist wanted to put me on that for some sciatic pain I had been experiencing and I said NO WAY. I just didn't have the type of symptoms that were necessary to take a drug like that -- especially given the possible side effects. In that case, a little acupuncture and some skilled shiatsu massage solved the problem instead of drugs.

A few things--
 

--for various people in this thread:

AlwaysLearning, if it can be confirmed that you have low levels of D, B's, etc., for no particular reason, malabsorption should be investigated, and the most obvious tests for that are for parietal antibodies and for anti-gliadin and anti-transglutaminase antibodies associated with celiac/gluten sensitivity; both of these are more common than most doctors generally think and can lead to malabsorption of nutrients in the gastric tract.

Also, as regards skin biopsy, the ranges for what constitutes a "definite" small-fiber neuropathy were somewhat arbitrarily established during the original MacArthur research protocols at Johns Hopkins; specifically, intraepidermal nerve fiber density lower than the 5th percentile or higher than the 95th, compared to the original "normal" control groups, was considered definite evidence of small-fiber syndromes. There is a lot of variation in what constitutes normal in an individual, however. People's nerve fiber density does tend to decline with age, even in people without symptoms. And it's hard to know what a person's "starting point" was by the time they have symptoms and get a skin biopsy. (Someone may have declined from a "normal for them" 70th percentile reading to the 25th percentile, for example--but this would still be read as "normal density" on a skin biopsy enumeration, as it would be almost impossible to have an individual pre-neuropathy figure to compare to.) This is why savvy neurologists won't just go by the numbers--they'll ask for reports of condition of the nerve fibers observed--is there excessive branching, swelling, deteriorated fibers evident--and use a fuller clinical picture, including symptoms, to determine if there is a small-fiber neuropathy.

My multi has B-12 in the methyl flavor, but I have been taking it with food:(
I'm hopeful I'll have similar results as you.
Thanks for your comment.

The capsulitis became very apparent when I got off my mare, after dropping my foot the last 6-8 inches to the ground. A fews weeks before that, I had tried a new pair of hiking boots. I laced them pretty tight, and used a lace locking tie to try to avoid major heel slippage. I only wore them about 30 minutes, but my feet didn't feel the same after that. I think I caused or exacerbated both issues with the tight shoes.

My sneakers made my feet hurt more. They were comfy, but made my feet fatigued after a while. Like, they didn't bend in the same place as my feet? Maybe that was the issue with your mary janes. I got a new pair of sneakers which are more comfy. I also got a pair of Teva sandals, with the adjustable velcro across the toe, instep, and heel. I made the straps as loose as I could, so they wouldn't hug my feet. Pretty sloppy, but I wore them that way for weeks. They have some arch support, and some tread. I think they helped, or at least didn't make issues worse.

If you do get the cortisone injections, be aware they hurt plenty. But, it's just during the actual injection. The second round of injections is less painful, as hopefully you have healed some. Hope you get relief soon.

Glenntaj,

I have never looked into celiac/gluten sensitivity, but I may have a reason to now. I will discuss this with my doc.

Thank you.

It should be taken on an empty stomach. I began with 1000 once a day and after one week I knew I had to take the 5000. I started with iherb.com and now we get all our stuff from Puritans because of the buy 2 get 3 free offers.

So far, so good.

Wishing you well!!!

Melody

Just wondering -- is it better to split up your B-12 dose during the day, or take it all at once in the morning? I just upped my dose to 5,000 mg of methyl and wasn't sure if I should cut it in half and take half in the morning on an empty stomach, and half in the afternoon two hours after lunch.

In theory, could taking some B-12 in the early afternoon give you more energy for late in the afternoon? Or does it really not matter?

It is better to take all at once... on empty stomach.

If you have intact intrinsic factor this is less of an issue.

But those who show up here with lows, have some problem or they would not be low and have the neuro symptoms.

When intrinsic factor is not working (for whatever reason), the only way B12 is absorbed is by passive osmosis thru the lining of the GI tract. The higher the concentration present, the more that will get thru. 5mg will result in more being absorbed, which is still a very small amount. 1mg also is absorbed, but 5 times less than the larger dose.

Some things have receptors controlling absorption, or a biochemical barrier. Zinc, magnesium, calcium, carnitine, Neurontin, are examples of limited absorption, needing perhaps divided doses.

Nerve regeneration
 

Mrs. D. Do you think adding Magnesium lactate and COQ10 acetyl L carnitine with the Methyl B12 lmg, R-Lipoic Acid 100mg and Benfotiamine 150 mg that I am already taking would round out a regimen of vitamins/supplements for aiding the possible regenerating of the nerves?

Magnesium, yes, is always helpful. It is involved in hundreds of other enzymes in your body as well, including the heart, and metabolism of essential fatty acids.

All you mention are fairly side effect free, and cost is only the factor that some use to decide upon. CoQ-10 with good absorption is costly, and so is acetyl carnitine. Puritan's tends to have Q-sorb CoQ-10 at reasonable prices. Puritan's sale of buy one and get 2 free ends tomorrow. They will then probably go back to buy 2 get 3 free. I just ordered more B12 and D for us today in fact.

R-lipoic has a long history of studies as Alpha lipoic for neuropathy, and so does the benfotiamine. So yes, all are quite good and worth the cost. Over time you may find some more effective than others, and make adjustments. Usually this is when improvements occur, and people tend to drop one thing here or there and see if the improvement holds.

Today I am searching B12 and immunity (mostly for my cat), but I found these papers which are useful for us, here:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

This one above is a chart of various oral doses and their absorption.

This one is a discussion on which oral doses helped elderly patients the most:
http://www.ncbi.nlm.nih.gov/pubmed/15911731
And this review article from 2009:
You may copy these citations and give them to your doctor if he/she needs educating!

Mrs. D, I just looked up Puritan's Pride and not sure what kind of Magnesium I should order, also the mg's as well. The same with the COQ10; not sure which to order. Thanks for all your input. I really do appreciate all you do for us PN'ers.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

While Puritan's is good for many things, they don't have much in the way of magnesium to choose from.

Using a chelate is best. Avoidance of Oxide type important. I do not like aspartate, because aspartate stimulates pain receptors (NMDA receptor).

Some people get laxative response from magnesium. So using a delayed release for them is helpful... SlowMag --generic called Mag64. Studies have shown this form is absorbed well.
http://www.google.com/products/catal...ed=0CE0Q8wIwAg
I get my Mag 64 at Costco for about 5.00 But not all Costcos will have it on their special OTC shelf. The Costcos where it has been requested typically have it. WalMart also carries it and the brand Slow Mag ($9.99)

Ionic Fizz is also good and I have used it too. It is very fast acting, and you control dose with the little scoop provided. But it costs a bit more money. Some people use Natural Calm which is a powder of the citrate. But too much=laxative action.

You can use the topical lotion which many of us now use with success:
http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

I find this at my local CVS stores. It may be in the first aid section with the epsom salts, or in the pain section, near the Thermacare patches and Tylenol etc products.

The lotion is the easiest to tolerate by far, is unscented and penetrates quickly into the skin. My husband uses it too for muscle strains and stiffness.

New study on B12 and cognitive ability in seniors:
 

This paper is getting alot of attention in the press. There are many links to the media on the net now. However, those media links do not last long...so I found the original abstract:

What this paper discusses is the MMA test which is specific to show if B12 is being utilized. In general it pertains to the levels of B12 also but only indirectly. A low B12 reading will raise MMA levels. MMA test is slowly being accepted for elderly screening for low B12 activity today.

This is one media link: I don't expect it to be active forever, but I'll post it because it is in the news today:
http://www.wbaltv.com/r/29307110/detail.html

Hi.

I've been taking the Malic Acid from Puritan's pride.

For years now.

The bottle says 825 mg 180 coated tablets
and this consists of Magnesium (from Magnesium Malage) 50 mg
and Malic Acid (from Magnesium Malate 825 mg


I hope this is good because I just got my blood work done, and had an exam and Dr. Fred says I'm EXCELLENT!!!

So....so far so good.

I wonder if it's all the green stuff I eat every day.

I'm probably filled with clorophyll.

lol

Melody

Thanks Mrs. D for the info on the Magnesium. This will be very helpful. I am also at a loss on choosing the COQ10. Do you have any suggestions?

Not sure I can use the Epsom Salt Lotion. My feet,ankles and legs are the bigggest problem with burning and pain. I have Statsis Dermatatis in those areas; primarily the Feet and ankles, starting to go to the knees. I use a petroleum jelly because the skin is so thin and discolored with brown, red and purple under the skin and some on top. This is prone to ulceration and the jelly will help the skin from drying and cracking. Unfortunately this adds to the PN pain.

You don't have to apply it to your targets....some people do when they can.

If you apply to intact skin the magnesium will get into you anyway and travel around your body. This is an alternative to taking oral if you are prone to being loose.

I discovered it will sting, if there is any skin irritation, because it does have a "salt" in it...a magnesium salt.
The lotion itself is moisturizing I have found as well.

Puritan's CoQ-10 contains Q-sorb to help improve absorption.
That is one place.
Another is a more fixey type to be found here: Q-gel.
http://www.epic4health.com/
These tend to cost much more, but reading the pages on them might be useful. They also have Ubinquinol which is a concentrated form that allows for a lower dose.
There are some on iherb.com by Doctor's Best...that have Bioperine in them, but if you are taking RX drugs I don't think Bioperine has been cleared as safe with RX drug absorption (may increase it).

@Melody--- the magnesium malate is fine...it is just such a huge pill, many people may not like it.

Mrs. D, Was recommending the methyl B12 to a friend yesterday. I told her it was best to take on empty stomach; at least 2 hrs. before and 1 hr. afterwards. She asked if it was okay to use water or liquid during this time. I do take a drink of water at times. I, myself am clear on this either. Is taking water in between those time make a difference? Thanks

Yes, I do tea with mine sometimes.

I put the 5mg methyl B12 for my cat in a bit of whipped cream, which she will take easily. It is working for her that way, but she is only 8 lbs compared to humans. She is really perking up since I started this, and the vet said to continue. Saves me much $$ from the shots they were going to sell me.

It is the FIBER and volume of the food, that acts like a sponge to block passive absorption of the B12. Some liquid, seems to be okay.