[birdman]

Hi, Sorry but this is a long one.

My recent neuropathy symptoms keep expanding like never before through out my entire body. It had only been in my right foot before this. It started with increasingly burning parasthesia plus expanding numbness in my feet and patches where it feels like I have rope burns. I'm itching all over and have the sensation of steel wool splinters in my skin. This has all been happening over the past 3 weeks but most of the expansion of the symptoms over the past four days. Before this recent spike I could easily ignore the symptoms most of the time.

I finally was able to see another internist yesterday and he said that with my glucose levels being so well controlled he thought it might not be from my diabetes. He said it might be B12 deficiency or any number of other possible causes. When I tried to show him a popular test laboratory company based in Texas that does micro nutrient testing he wouldn't even look at the material I downloaded for him. He is only willing to do the old type serum test because according to him it is the best science backed test. I offered to pay out of pocket if he ordered the micronutrient test but he sternly asked me who am I going to trust? His 30 years experience or some non standard test? I said I'd still like to try it.

I scoured the Internet and this test kept being mentioned over and over by people who seemed very intelligent and I told him even if there is a remote chance that it could help shine some light would he reconsider and he said not a chance. I'm in pain and I'll try anything that is recommended by people who have gotten value from it. I wish my MD could know what it is to live with this. He offered some pain meds but those make my eyes twitch non stop and worsen my depression.

Until I know if it is a B12 deficiency would it be safe to get injections before having the results? I heard that B12 isn't known to be toxic so I figure why not get injected and see if symptoms reduce? I have diminished intrinsic factor function and haven't found sublingual to be effective. What would be the maximum safe dose of a methyl B12 injection? Can anyone offer a guess based on what has worked for them please?

I know many of you people have been through this kind of thing and I'd really like some advise. I am already on a lot of the most common supplements mentioned here and eating a diet that is very similar to the super low carb Paleo diet. Doing light yoga, balance, palates, stretching and tons of walking. It's not really a diet but a lifestyle I've adopted. A1C is 5.2 and steadily losing about 1/3 lb a day on average.

My doctor has arranged for old serum blood test but all he said was come back in two months. Two months? With the levels of discomfort I'm in I want to do all the tests now but he is in no hurry. That's cruel. I was hoping for a doctor to empathize with me and tell me he'd do everything in his power to find out the source of my neuropathy ASAP. That seems logical but clearly he is in no hurry to find answers even though my symptoms are constantly gnawing away at me. All he offered was nasty meds. I already had a nasty time with cymbalta and lyrica. It's like choosing discomfort or reduced discomfort and feeling like a zombie.

A month ago my symptoms were only some light tingling on my right ankle and some numbness in my biggest toes. Periodically I'd have mild parasthesia on my feet and ankles but it would vanish in a week. This time after getting my eating habits and exercise in balance you'd think it would reduce the likelihood that my neuropathy advancing. That's what I've read is the best way to keep ahead of the game but not so. it's like a wildfire out of control. I have been walking a lot and thought that all that light pounding might be a contributor but the Doctor said that walking cant damaged my nerves further.

Seems like my doctor should have insisted I see a neurologist right away but he didn't seem to think it was crucial. Do any of you think that this might be a smart time to see a neurologist? I keep reading you are your own best advocate.

I miss my old Doctor who retired. He really went the distance for his patients. Seems like doctors these days have so many patients they cant focus any attention beyond your appointment and don't seem to understand the urgency of the situation unless your head is hanging by a few threads. I suppose most of these medical group type doctors have seen it all and get jaded to the point where they don't really care if you are in pain. It seems like most doctors these days are in it for the lifestyle it affords them more than a desire to help suffering.

I never thought in a million years I'd be in a predicament like this just trying to find someone committed to getting me some answers or at least preparing me for what I'm facing. I never thought my retirement plans would be derailed like this. Thank you.

[mrsD]

If you get injections BEFORE you know what level your B12 is at now...you will never be sure about it.

However, B12 itself is very benign, and not harmful to self administer. You do not need injections either, as there are many medical studies out now that demonstrate oral is as effective as
injections.

If you do supplement before testing, you should stop the supplement (oral) at least 5 days before the test to rule out artificially high results. Injections should be stopped at least a week or two before any test.

What IS important is that you need to understand that all people are NOT equal when it comes to activating synthetic cyano B12 ... genetic mutations in the methylation process are very common and synthetic will not work in those people.

Another test is called MMA and it measures whether B12 is being utilized in the tissues properly.

You really need to read the B12 thread here, as the links to all the NEW medical studies are on there, as well as other factors involved with B12 therapy.

The nutritional experts in the US are recommending that persons over 50 take a supplement of B12 ...
http://www.nutrition.gov/dietary-sup...al-supplements

This is the B12 informational thread on this forum:
http://neurotalk.psychcentral.com/thread85103.html

There is a link on that thread to a table of absorption data from a medical study showing Pernicious Anemia (low intrinsic factor) patients absorb about the same amount from oral B12 as normals. However you do have to TAKE oral properly....
it must be taken on an empty stomach for proper absorption in the intestine. You can forget about sublingual... sublinguals dissolve in saliva which is swallowed, and then becomes oral anyway.

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4
(The far right column is data from patients with no intrinsic factor.)

[Stacy2012]

Try finding a D.O. doctor he would be more will to perform the test.

I use private labs to go and do many of my own testing for things like nutrition tests, cheaper, private and I can order any test I want.

good luck, you have to become your own best advocate, keep pressing, dont let one doctor telling you no stop you.

[hopeful]

Originally Posted by Stacy2012

Try finding a D.O. doctor he would be more will to perform the test.

I use private labs to go and do many of my own testing for things like nutrition tests, cheaper, private and I can order any test I want.

good luck, you have to become your own best advocate, keep pressing, dont let one doctor telling you no stop you.

Hi Stacy,
I saw a post before that you said you could order your own lab test. If you don't mind me asking where do you live. I have never heard of being able to order any test you want without a doctors order.

Hopeful

[Dr. Smith]

Originally Posted by hopeful

I have never heard of being able to order any test you want without a doctors order.

You pretty much can, but don't expect your insurance to pay for anything not ordered by your doctor. There are plenty of companies who are more than happy to take patients' money for tests; they don't really care where it comes from. Any company should be checked out for accuracy, complaints, costs, reputation, etc. Caveat emptor.

order your own lab test

Doc

[Dr. Smith]

Originally Posted by birdman

When I tried to show him a popular test laboratory company based in Texas that does micro nutrient testing he wouldn't even look at the material I downloaded for him.

You've mentioned this a couple of times now. Do you have a link, or can you give us enough information so we can look this test up to try to understand the dilemma? Thanks.

Doc

[birdman]

I take Metformin which significantly blocks B12. I also take lansoprazole for a hiatal hernia that can cause neuropathy by itself by reducing stomach acid to the point where intrinsic factor cant metabolize orally ingested B12 properly. These two meds combined can reduce oral B12 absorption more than 90% from what I've read. That means most of the B12 is passed through with no benefit.

If I repeat myself bear with me. The standard serum B12 test and the outdated minimum safe level of 200 can make you think you have enough B12. This has been been proven not to be the case for a number of reasons that contribute to false readings. The updated minimum levels are at 400 and the serum test is replaced by intracellular vitamin analysis and or micro nutrient testing which is far more accurate.

With the meds I'm on I have a good chance of being iron deficient. For me I have to bypass the oral route and get injections. There is only one lab in the country that performs the updated test like you get in Japan, Sweden, Finland, France, Switzerland Germany etc. It was developed by a Nobel prize lariat at a prominent university in Houston Texas. I hesitate to mention the Lab because because I'm not sure that is permitted and I don't want to be accused of advertising a brand. With the info I have supplied you, you can easily figure out which lab by it is by doing a little Googling.

On another note. I was thinking about buying my prescription meds from those online pharmacies that purport to sell generic versions without a prescription. I have looked for articles warning against this but cant find a single one. Have any of you tried substituting prescription meds this way?

Dr Smith, You mentioned something that sounded like "L'Argenine". Today when I went to the supplement shop they had lots of choices. How many grams would you start with? I did purchase some R-Alpha Lipoic acid 200 mg tablets. Being that this is supposed to be a better absorbed form of ALA is the mg dose the same or less?

Thank you for sharing with me.

[Dr. Smith]

Originally Posted by birdman

There is only one lab in the country that performs the updated test like you get in Japan, Sweden, Finland, France, Switzerland Germany etc. It was developed by a Nobel prize lariat at a prominent university in Houston Texas. I hesitate to mention the Lab because because I'm not sure that is permitted and I don't want to be accused of advertising a brand. With the info I have supplied you, you can easily figure out which lab by it is by doing a little Googling.

It took more than a little. I did that first off, and got 4 Labs in Texas on the first page alone, which is why I asked the question. You can answer a direct question here ( I think the notion that I might be a shill is amusing/laughable Thanks for the yuk! )

I did some digging on Spectracell's test. I can't find any credible documentation that it's the standard used in any of those countries (scams exist outside the US as well, e.g the infamous Nigerian Scam) or that it's any kind of "gold standard". In fact, aside from anecdotal/testimonials (which is how scams operate) I can't find any documentation of any kind supporting the test or the science. (no studies whatsoever supporting its validity). On the contrary, I found a LOT of criticism and cautions of scam and quackery (scam spectracell).

The test has not been through the FDA approval process. That's not an indictment in and of itself, but considered with the other criticisms, a picture begins forming. It's not been accepted by the medical community, which explains why the doctors you've seen have been reluctant/refused to order it.

One example out of many: http://www.quora.com/Health-and-Well...-blood-testing

Regarding their claim that "Most private indemnity insurance carriers cover micronutrient testing" not everyone agrees. And I find that several more BCBS companies than they acknowledge do not cover the test (i.e. Alabama). Those that don't cover it say the test is "investigational/experimental" (i.e. again—no studies supporting the test or undrlying science).

At least one site questioned whether doctors who do order the test get kickbacks from the company. I wondered about this myself, because members of at least 2 other sites got the test thru his/her doctors (not thru ins.) for under $100 (Who's getting the other ~$300?) Their site also says, "SpectraCell accepts Medicare assignment and Medicare covers most of the tests." MOST of the tests? Spectracell offers many tests, some of which ARE FDA approved. Does that statement (not) include this micronutrient test? I don't know, but I'm not the first to ask the question.

I also see that Spectracell has some kind of doctor locator, but that most of the doctors on it are chiropractors. Don't get me started.

FWIW, they're also mentioned on Quackwatch.

Bottom line, when I see one questionable claim on a company's website, I begin to question their other claims, and this company's website is rife with blue-sky, too-good-too-be-true statements.

If you want to buy into the hype, it's your money, but IMO, medicine should be about science—not belief. After reading what I have on the flipside, I can see/understand (even with reservations) why your doctors have been skeptical. We've already got articles here posted by MrsD that only a small amount of oral B12 is absorbed. So what? That's why we take 1000-5000 mcg. The stuff is cheap (you can buy a buttload of it for the cost of Spectracell's test). If 1000-5000 mcg. isn't enough, take 10,000.

On another note. I was thinking about buying my prescription meds from those online pharmacies that purport to sell generic versions without a prescription. I have looked for articles warning against this but cant find a single one.

You must not have used the right search terms. I'd never do it.

Is it Legal to Buy Prescription Drugs from Online Pharmacies?

Buying prescription drugs on the Internet: Promises and pitfalls

online pharmacy risks

Dr Smith, You mentioned something that sounded like "L'Argenine".

Wasn't me, or it was something entirely different. L-tryptophan? Acetyl-L-Carnitine? N-Acetyl-Cysteine? This is another case where a link to the original post would be helpful.

I did purchase some R-Alpha Lipoic acid 200 mg tablets. Being that this is supposed to be a better absorbed form of ALA is the mg dose the same or less?

That may be overkill. Generally, 100 mg. of RLA works as well as 600 mg. of ALA. You don't have to tell me the math doesn't work; that's just how it comes out. There are several threads about it in the archives. My RLA is the stabilized form (which is purportedly absorbed better & has better shelf-survivability) in capsule form. If yours is not, and is in tablets, I'd just cut them in half and take them until that first bottle is gone—that's what I did.

Doc

[mrsD]

Buying drugs online (esp without an RX) is risky business. It is even risky to your computer to VISIT an online place like that, as they can download malware or trojans or viruses right onto your computer!

Many online suppliers sell fake drugs...they look like what you want but inside there is no drug at all, or another drug substituted. Very risky business. And after spending your money, giving them your credit card number---blech another risk--you run a high probability of having it confiscated by customs.

We do not allow illegal drug sites linked to here, for safety and legal reasons. Our guidelines include this fact.

Dr. Smith did a good job with his Spectracell comments.
There is no need to have them do testing, for the majority of people who need nutrient testing. For one thing measuring intracellular contents requires another RANGE to work with, because the nutrient tests we have now use only serum levels.

In some cases cells burst when taken in a venipuncture sample.
When this happens the red cells contents spill over into the serum and give a false (factitious) reading. This happens most commonly with potassium, but it can happen with anything.
In this case the INTRAcellular testing may be helpful. But most doctors don't have experience with it.

The testing we have today for B12 traditionally is
1) serum levels
2) MMA levels to see if B12 is being utilized by the tissues
3) transcobalamin --a new test--to measure the carrier of the B12 -- not all labs are doing this one yet.

4) and also very helpful is the DNA test for the MTHFR mutation, to see if the patient can activate folic acid and cobalamins.

Taking an oral methycobalamin today costs pennies a day. Within 3 months you can have levels up to 1000-2000 pg/ml. There isn't a single treatment, drug or nutrient, that is this available, so inexpensively, OTC and successful.

Of course if your B12 is showing normal (above 400pg/ml) you probably have something else going on to cause your PN.
You have to take the oral form on an empty stomach with no food for about an hour so it can be passively absorbed. Food will prevent this.
The dose of 1000mcg in the test that I listed to you...gave 13mcg in the serum. This is 3 to 4 times the RDA .

[jenng]

If my serum B12 is now in the 600's (was in the low 200's) from injections, would it mean I am methylating properly? I was considering the DNA test before, but found out my new levels. Thanks!