I think that is a tad much for B12 dosing. 5,000mcg a day would be more than enough if used every day. (was this a typo by chance?)

Since you suspect Macrobid as a culprit I'd also do acetyl carnitine, and especially the CoQ-10 because of your statin use. Both of these supplements, are suggested for DNA damage.
After 5 yrs one study found CoQ-10 synthesis is damaged by 50% when using statins. It is important for your muscles, and heart to have CoQ-10 to work on energy production by the mitochondria. The new water soluble types like Qunol and Q-gel, allow for less dosing. 100mg a day may be enough, compared to 300mg+ a day for the old oil gel formulas.

You could add in benfotiamine 150mg a day, to enable thiamine. Thiamine has always been historically used for neuropathies. Doctors have dropped it, when gabapentin came out, and that is a shame, because thiamine does work.

Good thoughts, MrsD.

I was using a dosage of the Methyl B-12 based on some NIH research. And yes it was 45,000 mcg a day. It didn't hurt me, and that was the dosage based on weight that relates to the NIH study on rats. If I were a BIG RAT that would be the right amount. But the neuropathy has to be the same that the rats had, I it still isn't clear what my neuropathy is.

I still have many bottles, so can go to one a day easily!

I've taken Co-Q-10 for years, probably at least 14. Right now I take 100 mg a day.

I took acetyl Carnitine daily until recently, when a Harvard article linked Carnitine to heart disease. New study links L-carnitine in red meat to heart disease - Harvard ..http://www.health.harvard.edu/blog/n...e-201304176083

http://ods.od.nih.gov/factsheets/Car...hProfessional/ A 2013 study that included both rodents and 2,595 humans undergoing elective cardiac evaluation found that L-carnitine is metabolized by intestinal microbiotia to trimethylamine-N-oxide (TMAO), a proatherogenic substance that is associated with cardiovascular disease risk [24].

Since I have severe CAD, my LAD was 95% blocked, I think I'll pass on the acetyl carnitine.

I can add the Benfotiamine, as it is well researched and discussed on several NIH sites, as well. THANKS!

en bloc, It's interesting about the Sjogren's and PN. It's just that I did NOT notice the PN as it developed. I was being tested for headaches by a Neurologist when he watched me walked and saw my PN. I was falling and couldn't ride my new bike, but did NOT KNOW it was my feet and legs. The PN by then was profound. But it has not changed one bit in 3.5 years. It is just odd to me.

Also I have never tested positive for Sjogren's. My neurologist said last week that the fact that I am also Immune Deficient may be the reason why I don't test positive even tho' I do have autoimmune conditions. About 25% or more of people with my type of Immune Deficiency have autoimmune conditions as well.

Ah, Wide-O, I'm not an alcoholic, but I am a compulsive overeater and I'm in OA. I know PN comes from alcohol consumption and a host of toxins, as well as diabetes, and some genetic conditions. My guess is still either the Macrobid or my autoimmune condition(s).

Today I'm dealing with the beginning of a 'reaction' to the new IgG product infused on Thursday. I was allergic to the first product,I started in August, and am trying a second. It's not looking good for that one either.

My body is NOT cooperating with me in any way these days! But I must be kind and loving towards myself and my body. It is 'me' and has taken me far on this journey.

Hugs, ElaineD

Just a thought, here is a very good site on Hereditary Neuropathy with Liability to Pressure Palsies (HNPP). That's another one to possibly check out.

http://www.hnpp.org/

Well, I don't think much of the B12 is really absorbed in those high oral doses.

This is why:
Here is a table showing very little change from 500mcg to 1000mcg in a study done on absorption:
http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

I think for passive absorption, there may be a ceiling effect. Not that the 45,000mcg is "harmful" unless you have Polycythemia vera. But there is another limiting factor and that is transcobalamin capacity which is not unlimited either. Transcobalamin is the carrier in the blood. It is thought that excess B12 could float around, without it, but I don't think that has been proven yet. There have been studies in Japan on 40mg dosing for MS patients, that showed no toxicity.

Because of the risk of vitamin dependency on ultra high doses, you might want to taper down to the 5,000 if you choose to change it. Some vitamins create a "dependency" state at high doses. Vit C has shown this. So if you decide to come down, do it in 5,000 mcg steps every 2 weeks or so. Dependency means the body adjusts to the ultra high intake, and reacts with deficiency symptoms when the ultra dose is withdrawn. I don't know for sure that B12 does this, but it could...so you would want to avoid that shock to your system.

I don't think the carnitine study is that alarming yet. More work needs to be done and more confirmation etc to become useful.
With mitochondrial damage present from toxic exposures, carnitine is very useful to help with energy production. But that is your choice.

Elaine D
I noticed you mentioned regarding you physical capability that you did not have scale to compare to.
I was just wondering if you could have your neurologist reffer you to a good Physical Therapist and Ocupational Therapist,

They could do a assessment and there would be scales etc to do performance compearasm.
This way you could from time to time do progress reports

Good luck

Synnove

ElaineD,

I have never tested positive (labs) for Sjogren's either...yet my biopsy was positive. However, even my biopsy was different then normal as the lymphocytes were not in large numbers as they would be in positive diagnosis, but by the time I was tested there was complete destruction of the salivary glands and replaced with scar tissue, so they consider the biopsy as positive and Sjogren's at end stage. I too am Immune deficient and have been told that this can alter my testing.

If you did not know your PN was developing, you likely have some sort of proprioception issue...especially if you were falling. Have you been tested for this? Can you tell the direction of your feet without looking at them?

I have significant proprioception issues, but it seem to come on fairly quickly...with balance, falling, sensation, etc. The pain in my feet though was slower.

What type of reaction are you having to the IgG? Hopefully, it is just a minor side-effect that will pass. IgG has a wide array of side-effects that can occur...some can be tolerated, others cannot.

Hi MrsD. These are the numbers from the period when I was taking mega B-12.

July 2012
Component Standard Range Your Value
Folate (Folic Acid), Serum >6.5 ng/mL >24.80
Vitamin B-12, Assay Serum 123 - 730 pg/ >1500

I stopped taking the extra B-12 about a year ago, not long after the tests above. My PN just wasn't changing at all, and I got tired of taking so much B-12, and paying for the sublingual type, as well.

I also take D-Mannose because it prevents adherence of e-coli to the lining of the bladder. I have Interstitial Cystitis and chronic UTIs.
N-acetyl-Cysteine because an Otolaryngologist said it might help my Meneiere's (and 4 years later some hearing returned in my right ear. Cause or chance? I take it just in case!).
I take Turmeric for pain and save Tylenol for extra pain since I can't take any opioids.
I take iron for anemia.
Mucinex
Potassium for leg cramps
Vitamin D
Fish Oil (2800 MG a day on the advice of my cardiologist)
Alpha Lipoic
a Multi vitamin
Aspirin - 81 mg
Lipitor (80 mg)-59
Atenolol (50 mg)
Triamterene HTCZ (75-50)
Pilocarpine (15 mg)
Nasonex
Cymbalta (60 mg)
Omeprazole (60mg)
Naproxen Sodium
Estrogel topical
Testosterone topical
Denavir topical for cold sores
Nature's Tears spray
Ultra Systane eye drops
a couple of RX for a recurrent fungus on the bottoms of my toes! I am subject to all sorts of infections due to my Immune Deficiency.
I have a large capacity cold steam humidifier running in the bedroom and there's also one on the furnace. Once the heat comes on, these are essential.

I started on Gammagard 10% IgG on Thursday, but think I'm going to be having a reaction too great to continue it.

Mainly what I'm treating with the medications is dry eye/dry mouth and sinus congestion, my coronary artery disease, and pain

My diagnoses are CVID, Sjogren's/Sicca, CAD, IC, Anemia, Blepharitis, PN, Meniere's with hearing loss, severe osteoarthritis, DDD in my cervical spine, Diastolic abnormality, calcified aortic valve, and Fordyce Spots. The last one is a self diagnosis but checks out and is totally benign.

I have begun all of the above, except the Lipitor since 1999. Before that I had few conditions. Tons of eczema and 'allergies' and respiratory stuff as a child, but outgrew the respiratory stuff to a large extent by 12, and the eczema by at 27.

That is quite a list. I hate to bring this up then, but you need magnesium too. The acid blocker blocks mag absorption, and
the diuretic depletes magnesium.

Best for you with all those medications would be the lotion/topical type of magnesium. Morton's is inexpensive and available at WalMart and newly at Walgreen's and also on Amazon. Morton's Epsom Lotion. I would apply it where you
get the leg cramps, and also on your inner arms for absorption into the blood.

Get too low in magnesium and you could have a cardiac event.
This may help your pain levels too, because magnesium is a NMDA pain receptor antagonist. Low magnesium also causes muscle cramping.

Magnesium, B12 and Vit D are the big 3 simple solutions to the most common problems people face today. Up to 70% of people in the US are low in mag. Vit D is approaching 70% now. And B12 is about 40%.
So I do think you would benefit from magnesium considering the drugs you use today.

Labs differ in the calibration for B12 measurement. Yours stopped at 1500, but the lab at my hospital went to 1999... which is where I tested for 3 mons of 5mg methylB12 Puritan's brand. Typically labs don't go over 2000 from what I have seen posted on the net.

Hi en bloc:

I didn't know my falling, inability to ride my new bike, falling backwards out of the shower onto my BACK twice at the gym, dizziness, any of it was PN.

I just thought it was 'getting old' or whatever! My health was deteriorating badly and it was a very confusing time for me.

I saw a neurologist in 2009 about chronic headaches, and he had me walk. That was that. The EMG results from January 2010 were exactly the same on Wednesday of last week:

Findings: i. Markedly decreased amplitude of the right and left peroneal and tibial nerves.
2. Decreased conduction velocity of the right and left peroneal and tibial nerves.
3. Increased motor latency of the right and left peroneal and tibial nerves.
4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves.
6. Delayed Iatency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION:
1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

I cannot walk any distance, it is too much work. I cannot stand for any time. I stagger from side to side. If someone is behind me it upsets me.

The reason for this is that my perception as relayed to my brain is scrambled. If I step on an acorn, my legs send that message, but the message is scrambled and my automatic reaction is that I'm falling into hole.

But if I see something I have to step over, my brain tells my legs, but the message is scrambled, and I don't raise my foot the right amount.

I have extreme right foot drop, and some left foot drop. So my toe doesn't clear the ground when I walk, and I stumble.

I cannot back up, step side ways, or weave among people.

I have a cane, but don't use it because I don't really walk much. I use the shopping cart at the store for balance, and exercise in the water and on the equipment that I can sit on at the gym.

My toes are dusky purple because the nerves to the blood vessels don't work properly. My feet are usually icy cold, as well. In fact the only thing I really noticed was how cold my feet were, and I asked my cardiologist for a peripheral vascular test in 2007 because I thought I had circulation problem due to cholesterol deposits. My circulation is better than normal!

I have to be careful with my feet because I don't feel damage. And yet I still have nerves that feel like I have a shard of glass in my heel! I even tried to find the glass 5 years ago! I was so sure there was something in my heel. Now I know that it is nerve pain.

I take Cymbalta specifically because it is on label for nerve pain.

My reaction to Hizentra20% was profound fatigue, pain, depression and itching and burning skin, tingling lips, itching eyes, and this got stronger and lasted longer each week. The site of the infusions was NO PROBLEM. The problem was systemic and developed a couple of days after the infusion.

However by the 9th infusion it didn't stop and I had the 10th infusion while in that state, after the Benadryl wore off at 2 pm I woke up in true developing shock, itching burning swelling, tingling all over. But didn't need the epi pen.
Just toughed it out. It went away about 4 days later, but I discontinued the Hizentra.

I started Gammagard 10% on Thursday this last week. Again, no reaction at the site of the infusions, but fatigue, headache, finger pain, and then itching and burning set in Saturday. I feel very weak and shaky but Benadryl is stopping the worst of the itching and burning for now.

I've never had IVIG. My body just doesn't play nicely with medications, I guess.

I was so hoping the Gammagard 10% would be the magic answer.

What do you infuse? I have CVID.

my numbers are:

G 388 range 588-1573 4/22/13
A 106 range 46-287 4/22/13
M 18 range 57-237 4/22/13
IGE 5 range 4- 269
G Subclass total 402 range 767-1590
G Subclass 1 198 range 341-894
Subclass 2 124 range 171-632
Subclass 3 18.1 range 18.4-106
Subclass 4 – 5.6 range 2.4-121

I had only one immunity from the Pneumovax 21.

Hugs, ElaineD