[paulmethyl]

Greetings,
I have been living with intense facial neuropathy for 10 years. For years I was told that it was all "in my head." Unfortunatley, I believed the doctors. FYI, I was told this by the head or rhuematology at the Cleveland Clinic. I also got no relief from the Mayo Clinic in Rochester, MN. However, the pain/numbness increased with increased stomach problems, joint pain, extreem fatigue (could not get out of bed for weeks on end), and disorientation. I was diagnosed at the Hospital for Joint Diseases (part of NYU in New York City), with Auto-immune disease and Hashimoto syndrome. I have been taking methotrexate, prednisone, enbral, leverthoid, and folic acid. However, none of this helped my situation and only left me with more pain and numbness. Sometimes the skin on my face would burn, as if I had sat in an oven. I was told this was called RSD. The pain was so intense that I became completely disabled. After years of complaining about my symptoms with no relief, I tried a different doctor in New Jersey who is a DO, not a MD. He said that numbness and burning is often a sign of B12 deficiency or malabsorbtion. He placed me on methylcobalamin (10,000 mcg/ml) with 1mg self injectible shots 2x week. Within a month, the neuropathy was completely cleared, energy was restored, and mood was elvated. The problem is this. Since I've been on it, I have had intense facial acne in the form of deep and painful cysts. Every day a new one appears on my face. It has now spread to my back. I was given dicloxacillin 250mg 4xday, but that failed to do anything except give me an upset stomach to the point of vomiting. I also have a history of C Diff. This is because of enbrel. Enbrel lowers your immune system making you more likely to catch an infection. I was forever catching throat infections, so I was on a daily antibiotic, but that landed me in the hospital for a week with ulcerated collitis and C Diff. So, anti-biotics are out. Besides, the dicloxacillin did not do anything for the methylcobalamin induced acne. Are the other forms of B12 (cynacobalamin or hydroxocabalamin) as effective in treating neuropathies? If so, do they cause cystic acne the way that methylcobalamin does?
I really am feeling better now that I've stopped taking all of the drugs for my supposed auto-immune disease. I also now realize that my problem is based in B12 malabsorbtion NOT Hashimoto syndrome or any other kind of auto-immune disease with the possible exception of pernicious anemia. Also, by B12 blood level shows within the low but normal range. The DO that I saw in New Jersey claims that blood tests are not the decisive factor in determining B12 deficiencies. If anyone out there knows if cynacobalamin or hydroxocalabmin, and what side effects they have I would be most appreciative. Right now I'm of the methylcobalamin, and I'm very worried that the facial neuropathy will return.

Best,
Paul

[Doody]

Hi Paul, and welcome to NeuroTalk.

I hope someone comes by who has had experience with this.

I looked up information on the cynacobalamin (?) and here is the link. (It lists side effects.) http://www.nlm.nih.gov/medlineplus/d...r/a605007.html

Here is a link to hydroxocobalamin. http://www.medicinenet.com/hydroxoco...le/article.htm

I don't see that either of them mention acne as a problem, but then...in my 'medicine' adventures, I've come up with side effects that are so rare, the doctors could only agree with me after looking them up in whatever books the use, lol. For instance...every time I've tried to take prozac (which was 3 different times) I would get a very rigid neck in the back. Felt like someone shoved a 2x4 in there and was even difficult to move my head back and forth. Sure enough, it was listed as one of the rarest of rarest side effects. I'd go off prozac and it would go away.

Anyway, I don't have any experience with B-12 but I know there are a lot of folks who do.

Oops, I just now discovered that YOU already discovered the vitamins forum, so I'll say no more.

Just, welcome!!!! I hope you figure it out.

As an adult acne sufferer, I totally sympathize with you. Mine are sporadic, so I get cortisone injections when one pops up. Totally gets rid of it.

[AfterMyNap]

Hi, Paul, welcome to NeuroTalk. Doody has provided you some good links and you may want to check in with the medications forum here.

http://neurotalk.psychcentral.com/forumdisplay.php?f=72

Again, welcome to NT, I'm confident that you will find a lot of supportive people here.

[watsonsh]

Hi Paul,

First off

Doody mentioned that you found the vitmin forum and I will wander over there in a moment to read and catch up but if you are there you must have found Rose our B-12 champion and Mrs D one of the smartest folks here.

Each person is different and has different tolerances. I believe that methyl is the best form of B-12. But maybe now that you have restored your stores of B12 you can go to a lower maintenance dose.

I Know that low B12 and hashis go together. For Hashi's folks we want to try to keep our B12 blood levels at or above 1000.

I recently did two tests that were more accurate for b12 testing than blood serum levels. the first was Spectracell and the second was from B12tester.com.

I wish you the best of luck and hope you find some answers to your questions.

[rose]

Paul,

Sounds like you have a good doc. It also sounds like you have responded to the B12. Good.

Methylcobalamin is better than any of the other forms. If you have acne you probably need some other nutrient. When B12 is working to repair, if you are lacking some other nutrient sometimes the body will show it. Consult the vitamin deficiency forum for more information on this.

rose

[paulmethyl]

I had to completely stop the metyhlcobalamin because the cystic acne is very intense. I have been taking E, Zince, Omega 3 Oils, and a plethora of other supplements for years, including the time that I went on methylcobalamin, so supplementation is not the answer. Instead, I'm now going to try cyanacobalamin (injected) in hopes that it does not give me acne. If it does, does anyone know if hydroxacobalamin causes acne? If so, does anyone know if the oral versions of methylcobalamin causes acne? So far, the facial neuropathy has not returned, and I've been off of methycobalamin for nearly two weeks. However, I've become fatigued and very sluggish again. Also, the acne is starting to ease up now that I've stopped the methylcobalamin injections. Does anyone know if accutane could help? Does accutane interfere with B12? I really need some help, so any advice would be greatly appreciated. I'm desperate.
Thanks

[rose]

If the methylcobalamin was causing acne, the most likely reason is that it was working fast to help you (because a larger quantity of usable methylcobalamin was getting through).

If you were to take hydoxocobalamin or cyanocobalamin you would be getting less methylcobalamin (as your body converts the other form to a smaller amount of usable methylcobalamin). And that might make a difference. Might or might not help as quickly or as much, but also might not cause acne.

Another thing to consider is that many people do not metabolize one or more nutrients well. So even though you have been taking them, it may be that you have not been getting the full benefit.

Best wishes,

rose

[paulmethyl]

Hi All,
It looks like I found something that may help patients that develop cystic acne as a result of taking injectable methylcobalamin. After my outbreak, the worst I ever had, I went to a dermatologist who prescribed solodyn (135mg 1Xday). Solodyn is a new generation tetracycline that specifically targets red puss filled nodules. After three weeks of taking this medication, the cysts completely cleared. I do have some residual brown spots, but they have begun to fade. Because the solodyn worked, I have resumed methylcobolamin injections and have not encountered any nodules.

As mentioned earlier, methylcobolamin is working beautifully in resolving my nine year bout of facial neuropathy, originally thought to be auto-immune disease. My neuropathy was so intense, that the skin on my cheeks became shiney and painfully tight. These patches were diagnosed as scleraderma by several rheumatologists. Although methylcobalamin caused my acne, it also caused the skin and texture of my skin to revert back to a healthy glow. No more shiney painful patches. Other beneficial reactions include better sleep, increased energy, clear thinking, and a calmer demeanor. Moreover, I'm no longer depressed about my health. All in all, the combination of solodyn and methylcobolamin has proven to be a life saver!

As a side note, my doctor switched me to cyanacobalamin in hopes of reducing the cysts when they first appeared. I do not know if cyanacobalamin mitigated the acne, because during that time I started solodyn. However, I can say that cyanacobalmin did not improve my neuropathy. In fact, I don't think cyanacobalamin did anything for me, although I am aware that it is used for pernicious anemia. When I resumed methylcobalamin injections, everything improved again.

Hope this helps!!

[Lanee]

RESPONSE TO paulmethyl

Paul,

MY SUCCESS:
After taking 1000 mg a day of cynacobalamin (sublingual Superior Source) for three months, my B12 increased markedly. After over three years, I personally have had no rashes or skin problem. (Note: I’m also allergic to penicillin.) Could any of the other medications you were taking be the cause of the cyst reaction?) See history and details below:

I’m a sufferer of B12 deficiency. I originally took injections and had a severe rash reaction on my face, arms and legs. They were not cyst.

I was told it was probably the liver extract that was added to the injection. I didn’t have the reaction when the liver extract was omitted. Recently I’ve read that the serum used to deliver B12 causes rash reactions

At one point In my life, my anemia was constantly below the transfusion point with no know explanation as to why. When it reached an alarming low below the transfusion point, I was hospitalized immediately. A bone marrow aspiration revealed megaloblast. I was given injections of iron weekly (max dose), 12 folic acid pills a day (max dose available), prescription multivitamins, and B12 injections weekly. Finally, after 63 iron and 63 B12 shots, my hemoglobin raised to at or just belos the transfusion of both the commonly used blood test.

I borrowered a nurse friend’s nutrition book. I researched sources of B12 and iron. It appears that while plants have a form of B12 in them, we can’t absorb them. The maximum natural B12 source is animal meats with red meats being the best and the internal organs (liver) the highest source. I didn’t like liver, finally learning to like chicken livers first and now beef and pork livers. My doctor said that cynacobalamin is the absorbable source of B12 that we get from food. And, for ten years I ate mega overdoes of these foods, including the vitamin supplements. I purchased hind quarters of beef and ate it with fruits (dried and fresh), nuts, and veggies. I was determined to beat this. After almost ten years on this diet the anemia gave way to a maintained very low normal reading.

What I didn’t know and I understand was not common knowledge at the time, was that having the anemia in the “normal” range, which large doses of folate can do, does not mean the megaloblastic condition is gone. One of the diagnostic testing tools used to test anemia may appear normal, as mine was low normal; but the insidious megaloblastic anemia, a form of pernicious anemia, is still present.

I continued to have all types of symptoms – that I understand now are symptoms for problems that include B12 deficiency. The amount of red meat, including chicken and beef livers made my low readings questionable. I progressively got worse until my neurologist notice my history of anemia and questioned me about it. The bone marrow aspiration revealing megaloblast resulted in him placing me on B12 therapy again – for the rest of my life he said. We first tired the B12, B6, Folate combination in the sublingual form by Superior Source, checking my B12 levels three months later.

During this three months time I researched everything credible I could find to determine the side affects of B12. I’m very cautious about taking any kind of medication; so the idea of taking anything for the rest of my life demanded I knew what the possible side effects could be. The only thing I found was reactions to the serum that is used in injections to deliver the B12. Since my appointment with my internist was before the neurologist, I asked him what the side effects of cynacobalamine are – sharing that I only found reactions to the serum used to deliver the B12. He said, Do you know why you couldn’t find it? I said, “No.” He said it was because there are no known side effects of B12. He said research had been done utilizing extremely high doses with no known side effects.

After my mother’s death we (six siblings) had an autopsy on her brain done. The pathologist said the brain did not reveal the usual Alzheimer pathology. He said there were tiny spots of dead cells throughout her brain. When I queried my neurologist as to what could have caused mother’s condition (previously diagnosed as Alzheimer), he said B12 deficiency, tiny strokes, or a vascular condition.

If you were taking other medications, they or a combination thereof, may also be the cause of the cyst. But, there is the possibility that the serum in the methycobalamin may be the problem. Have you tried sublinqual B12 – cynacobalamin and/or methylcobalamin?

I CURRENTLY TAKE 1000 mgs of both cynacobalamin and methycobalamin, sublingual, Superior Source, with no side affects. It is my understanding that the natural way (food, red meat etc) we receive B12 is cynacobalamin. The liver then converts a small portion into methycobalamin, that is believed to be utilized to maintain and restore neurological functions. Therefore, in an abundance of caution, having found no know side affect to B12 in and of itself, I take both.
PLEASE, if you haven’t already, CHECK OUT THE SERUM. If you have found research that disputes my findings, please share.
LANEE

OTHER INFORMATION MAY BE FOUND AT THIS SITE:

More common causes of pernicious anemia include:
• Weakened stomach lining (atrophic gastric mucosa)
• The body's immune system attacking the cells that make intrinsic factor (autoimmunity against gastric parietal cells)
• Autoimmunity against intrinsic factor itself
The disease begins slowly and may take decades to fully establish. Although the congenital form occurs in children, pernicious anemia usually does not appear before age 30 in adults. The average age at diagnosis is 60.
Risk factors include:
• Family history of the disease
• History of autoimmune endocrine disorders, including:
o Addison's disease
o Chronic thyroiditis
o Graves disease
o Hypoparathyroidism
o Hypopituitarism
o Myasthenia gravis
o Secondary amenorrhea
o Type 1 diabetes
o Testicular dysfunction
o Vitiligo
• Scandinavian or Northern European descent
In addition to pernicious anemia, other causes of vitamin B12 deficiency include:
• Certain drugs, including colchicine, neomycin, and para amino salicylic acid (used for tuberculosis treatment)
• Gastrointestinal disease (stomach removal surgery, celiac disease, Crohn's disease)
• Infection (intestinal parasites, too much growth of bacteria in the small intestine)
• Metabolic disorders (methylmalonic aciduria, homocystinuria)
• Nutritional problems (strict vegetarians who do not get vitamin B12 supplementation, poor diet in infancy, or poor nutrition during pregnancy)

[azoyizes]

Hi Paul, and welcome to NeuroTalk! As you can see, there are a lot of very nice and very helpful people here.

I hope things improve quickly once you and your doctors find the right combination of meds for you. Hang in there.