Your Name: John Vlok Dommisse MD, MBChB, FRCP(C)
Your Story: I first discovered B12’s devastating psychiatric effects in a psychotically-depressed 28yo single mother in 1976. Since then I have seen the benfits of optimizing the serum B12 level in thousands of patients, preventing Alzheimer’s in ALL patients with early memory loss, reversing depressions and bipolar disorders in hundreds of patients, also fatigue, violent behavior and rage attacks. Also peripheral neuropathy. B12 deficiency is the easily-treatable cause of most of the above conditions.
Your Name: Glenn M.
Your Story: I was diagnosed in May 2009 with a severe vitamin B12 deficiency, but it took three doctors and three months to reach the diagnosis. After seeing my primary doctor three times and two trips to the lab for blood tests, he referred me to a neurologist. I saw the neurologist twice with blood work after both visits. He suspected MS and referred me to another neurologist who tested me for GBS. I tested negative so he sent me for blood work and an MRI of my brain, neck and spinal cord. Based on my symptoms and testing negative for numerous things, he suspected ALS. But fortunately, he screened by B12 level and it was 131! He immediately started me with daily B12 injections. I soon discovered the “Could It Be B12?” book and read it as fast as I could. Wow! What a wealth of knowledge it contains. The best thing I learned from the book is the different forms of B12, such as cyanocobalamin and methylcobalamin. I was originally prescribed cyanocobalamin because it’s the most common and least expensive form. But it has a trace of cyanide in it which I don’t want flowing through my blood stream. Also, the book indicates that methylcobalamin is better for treating neurological symptoms, which I had. The good news is I had a full recovery! It took four months with daily B12 shots plus supplementing with sublinguals and B12 creme. I had 28 symptoms, the worse of which were fatigue, insomnia, muscle atrophy & weakness and difficulty walking. I still take daily shots and will probably continue to do so for life. My B12 level was checked in October and more recently, 2000 both times! No harm. B12 is non-toxic so there’s no such thing as a B12 overdose. Better to take more than I need than to become deficient again!
Your Name: Bryan B.
Your Story: Dear Sally Pacholok and Jeffrey Stuart,
I was diagnosed with pernicious anemia recently, and I am sure this would never have happened if it wasn’t for your excellent book.
Because I don’t suffer from anemia, my family physician and haematologist didn’t take my B12-deficiency seriously at all. Luckily with the help of the information provided in your book I was able to persuade them to test further (antibodies to IF and parietal cells, both positive) en gastrin (which turned out very high, 2100 ng/L).
I live in the Netherlands and a lot of people who are experiencing the same difficulties as I did would love to read your book, but are unable to because it’s in English. I therefore would like to ask you if there are any plans for a Dutch translation, or any other language for that matter?
Your Name: Kavita Desai, MD
Your Story: Hi Sir/Madam, I am a physician myself. My 74 year old father who has been a vegetarian all his life sincerely seems to have vita B12 deficiency. He has atrophy of brain on MRI, which is unexplained and except for anemia has most symptoms associated with B12 deficiency in your book. I would like to talk to both of you if possible regarding his condition. Thank you and looking forward to hearing from you.
Your Name: Michelle K.
Your Story: Sally, I am hoping that you can help me out. I started out with tingling in my 2 big toes and it has migrated up my legs and to other parts of my body. My first test from my PCP showed i had a B12 level of 194. Since then it has been a long story, with many doctor visits (neuro, GI, etc), and no progress. Nobody so far has shared any of the information that you have in your book. How do I find a B12 doctor in…… that can help me? I am only 36, am not sure if this is my issue or not, and am very scared. I don’t want to have permanent damage because of nobody being able to help me. My work life and my social life are both suffering. I am very frustrated, confused, tired, etc. as it is very hard being your own doctor. I am sure you get these questions a lot, but I would welcome any feedback/direction/etc. so that I can find out what’s wrong and fix it.
Thanks in advance.
Your Name: Sandra Z.
Your Story: Yes, it could and it is B12 in my case. I am a 47 year-old Fine Artist whose life was paralyzed during the year that I suffered of terrible symptoms until I was (rushed to the ER for blood transfusion) finally diagnosed with B12 deficiency in July 2010. I will buy this book and share your valuable info with my family and physician, who failed to put the puzzle together. My GE performed two stomach biopsies and I was confirmed Atrophic Gastritis. I am an active swimmer and runner whose life was miserable for a year with no diagnosis. Thanks for the awareness!!!
Your Name: LC E.
Your Story: I am female and 58 years old. In 2004 I started feeling tired and my muscles started to ache. Over the next 6 years, it was hard to walk any distance and while house cleaning I would have to sit down to rest half way through. I suffered from intense muscle cramps, and muscles pain all the time. I was having trouble bending over to tie my shoes, lifting my legs up high enough to put my pants on. Severe muscles headaches that would wake me up at 1 or 2 o’clock in the morning for over 4 years and in 2008 my digestion started to be impacted. I started having tingling in my left big toe, which spread to my whole foot and up my left leg. I still have weakness and tingling in my wrists. I would lie down to sleep and suffer heart palpitations and would have shortness of breath and half the time I couldn’t sleep. My younger sister called me late in 2008 to tell me she had been diagnosed with Pernicious Anemia and to tell my doctor which I did. He never said anything about it. In fact I was going to his office on a regular basis for the last 6 years for all the above symptoms and I was never diagnosed with anything.
In October of 2009 I went to see an Endocrinologist because I thought I might be diabetic. I also mentioned my sister’s diagnosis and the doctor had me tested. I also have Pernicious Anemia and my B12 level at testing was 178. I currently take sub-lingual B12 twice a day and feel like I have my life back. I still have problems with my muscles and they are not healing as fast as I would like.
Your Name: Julie B.
Your Story: Hello Ms. Pacholok. I am so thankful to have found a way to contact you. Because of your book and all of your research, I found out that I was b12 deficient. I went to my regular doctor for a full physical because I wasn’t feeling well. Everything came back perfect, even my b12 (which actually showed up as in the high range). They just performed a typical blood serum test. I had already started taking chewable b12 at this point. I knew that was wrong so I sent off for the urinary mma test from Metametrix Laboratory. Those results came back high, which means that I am low. Since then I have been taking sublingual b12 (for about a month now). The health food store here in Oklahoma sells a brand called “No-shot” b12 and it comes in the form of Methylcobalamin at 10,000 mcg, b6 at 2mg and folic acid at 1200 mg. Most all of my symptoms have disappeared except the vibrations and feeling kind of weak in the core of my body. I don’t have the numbness or tingling, or weak legs or arms or the feeling of not being able to hold my pencil tightly (although I always could…it just felt like I couldn’t) or the shaky hands or the heart palpitations. Those are all gone. I just still feel the vibrations and the weakness in the core of my body. I was wondering how long it takes one’s body to be at a normal b12 level and all of the symptoms to disappear.
Your Name: Holly
Your Story: I would like to reach out to Sally. I am a 26 year old female. I recently went to my doctor with complains for tremor, numbness, coldness, and tingling in my hands and feet, really fatigue, weak, muscle spasms, weight loss, loss of appetite, insomnia, abdominal pain, hair loss. Just about every symptom one could have with a severe B12 Deficiency. He did blood work and my level came back at 31..not 131..31. I have had these symptoms for a really long time. Now know what is the cause and how long I have gone untreated, I just want to know what else I need to do. My doctor is just giving me the injections and requested that I take the 1000 mcg a day. If you could give me any advice it would be greatly appreciative.
Your Name: Shannon S.
Your Story: I have been diagnosed as having pernicious anemia several years ago. I am also a vegan. My B12 is on the very low end of the spectrum, and my nurse practitioner only gave me an injection at my persistence. The injection alleviated my symptoms SIGNFICANTLY!
Your Name: Wendy I.
Your Story: Thank you for your valuable book.
I have neurological symptoms that come and go–numbness in hands and feet, difficulty finishing thoughts and sentences, slight slurring associated with an odd sensation in my tongue, Lhermitte’s sign (just one evening this week), The numbness occurred last summer then resolved itself. Now it is present, off and on, and is accompanied by the cognitive/speech issues. I’ve also had other minor symptoms of a B12 deficiency.
I asked for a B12 test and was given a serum B12. I was told I was low, so, after reading various studies and your suggestions, I asked for the UMMA test, the HC test, and the Schilling to make sure that we were getting an accurate picture of my situation, I also asked what sort of injections were planned and at what dosage, and whether I could do them at home. (It’s inconvenient for me to get to the clinic weekly.)
My doctor responded with this message:
Your blood counts are normal which means you do not have pernicious anemia so the tests you mention would not be appropriate for the work up of your symptoms. If you would like to meet with a neurologist regarding your symptoms, that would be appropriate. Please let me know so that I can submit a referral for you. Your B12 was mildly low with a level of 268. The current recommendations are to treat any level less than 450. To increase your B12 level the treatment is B12 1,000 mcg injections weekly for 8 weeks while starting oral B12 1,000 mcg daily simultaneously. We would then repeat your B12 blood level in 10 weeks (2 weeks after you complete the injections). The next B12 level would help us determine if you would continue to need injections or would only need daily oral supplementation.
Can you tell me what I should say to convince her that we should also do the MMA and the HC test? I don’t want to delay treatment any longer, but I want to make very sure that we’re taking the right course and that, if I need B12 injections that we are using the right type of injection with adequate doses.
Your Story: Hi There,
I am mailing from Dublin Ireland, and am working in the healthcare industry as a fitness and exercise consultant.
I have recently been diagnosed with B12 deficiency through a standard fasting (12 hour) B12 blood serum test. I am due to start treatment in 1 weeks time. Without going into my symptoms on this first mail, I am attending an experienced Gastroenterologist (who has performed an endoscopy and colonoscopy taking blood tests and biopsies to investigate the causes of my low B12 count before starting treatment – pernicious anaemia etc) who discovered the deficiency and feel confident in his abilities.
However I was surprised at the lack of awareness in Ireland to the potential serious effects of B12 deficiency. As I work in the healthcare industry I have decided to set up a website providing the public general information on B12 and eventually starting a more public campaign.
I intend to move quickly on this and have been researching B12 deficiency since I was diagnosed. I purchased your book and was enlightened by the content particularly regarding the uMMA test. Your passion on B12 is very obvious and it has taken me 7 years of attending over 20 consultants to get to the root cause of my health problems.
I would be very interested to discuss with you by mail or telephone about the topic and any other advice you could offer.
Your Name: Lula
Your Story: I was diagnosed with B12 deficiency (pernicious anemia) and hypothyroidism about 8 years ago at the age of 39. Very soon after I started taking thyroid medication and B12 injections my health turned around for the better. I have continued both treatments and still feel pretty good most of the time. However, recently I have been denied insurance by Kaiser, Blue Cross, and Anthem because they believe that I have a “blood-born disorder.” Never mind that I am in perfect health and that the treatment for pernicious anemia, B12 supplement injections, is equivalent to taking a multi-vitamin. The insurance companies are grossly uniformed about this condition which makes getting coverage next to impossible. I am very frustrated with the state of US healthcare. The insurance companies and managed medical care organizations are committing criminal negligence by not taking care of people who need care – even very inexpensive preventive care.
Your Name: TJ Goh
Your Story: I am a family physician in Singapore and I treat quite a number of elderly patients with B12 deficiency. I am very impressed with the details given in your book “Could it be B12?” You have saved me much research time.
I want to ask you 4 questions:
1. How fast does ur. MMA/creatinine ratio respond to treatment with B12 replacement therapy?
2. If B12 replacement were to be stopped, how fast does ur. MMA/creatinine ratio start to rise again?
3. What evidence do you have for the validity of the Cobalamin Deficiency Risk score? I would like to know the papers you used for reference so that I can convince my colleagues to do more screening, especially those patients over 60 years old.
4. Which papers did you reference when you state that urinary MMA/creatinine ratio is more sensitive (+/- more specific) than serum B12? I need the info to convince my regular lab to start offering this test.
Looking forward to your second edition…
Your Name: Lynn E.
Your Story: Pain and tingling started out slowly. After thinking it would go away on its own, the pain got so bad I could barely stand it. I couldn’t sleep, couldn’t type without pain. Went to regular internal medicine Dr. He thought Carpal tunnel, went to hand surgeon who tested and said not Carpal tunnel. Went to a neurologist and was tested. Put on Lyrica which helped tremendously. In giving her my medical history happened to mention I have a Kock pouch, surgery from having Ulcerative Colitis and in past had been receiving B12 shots monthly but had not had a shot in a year or more. She put me back on B12 shots, weekly then monthly. By the end of the 3rd month I was totally off Lyrica and totally pain free. I won’t ever stop getting B12 shots.
Your Name: Cynthia N.
Your Story: Your book has been a wonderful eye-opener for me as a physical therapist. I have recently had three patients that have symptoms of B12 deficiency, but I only meet anger from the care managers if I talk about any more testing than the serum B12. I am told that the physicians will never order additional tests unless the serum B12 is out of range. It’s very depressing to stand helplessly by when I’ve learned that an easily treatable condition can leave irreversible problems if ignored. Thank you for your vital work and contribution in this field!
Your Name: Leah S.
Your Story: I have B12 deficiency. I had been misdiagnosed and it was only found when I was having blood work to see if I had Crohn’s, which I do not. My oldest daughter has it as well. My doctor does not seem to think it is anything to be too concerned over, but does prescribe shots for me, however doesn’t check my levels anymore because he says my results are always all over the place. I would love more info on this and what causes it for no apparent reason. My mother is dead but did suffer from some mental problems. What else can this cause, my level was below 200 when it was found out, after at least 8 years of being misdiagnosed and I’m sure thinking I was neurotic.
Your Name: Betsy S.
Your Story: Hello and thank you so much for your book. It appears my GP has finally found I’m deficient in B12 after 17 docs and no diagnosis (other than post concussion syndrome) and five years of neurological issues, including tremor, one-sided spasms, anxiety, weakness, fatigue, etc. He ran the serum test after I asked him to look at things again in November. Gave me some regular shots then I started investigating and found your book. I tried to get him to run the other tests but he thought they were unnecessary as I could “just get shots as needed” —- then we had another discussion after I was done reading your book and after mid-way through the shot program you recommended he still hasn’t finished “researching” methyl vs. cyano.
I guess my thoughts are that I should try the methyl sublinguals now since cheaper than shots and he won’t move off the dime with methyl. Any comments? I really want the methyl in order to repair nerve damage, help with delayed sleep etc., but unsure if sublinguals will help. (I tried regular oral B12 and it didn’t work.) The great effects of the cyano shots wear off after about 4 days when taken weekly.
This is kind of disjointed but any advice would be appreciated. Recommending your book to others. Again thanks – a miracle in some ways!
Your Name: Dana B.
Your Story: I’ve had frequent migraines and chronic fatigue since the mid/late 1980s.
I came across some information lately regarding hydroxocobalamin and decided to give it a try. I started taking lozenges (Perque Activated B12 Gard 2000 mcg hydroxo b12 , working up to 4 per day) around the first of January 2011. I had been taking one Jarrow 1000 mcg methylcobalamin daily for many years with no apparent benefit, but within a week of starting the hydroxo b12, my migraines stopped and I haven’t had one since (so far around 6 or 7 weeks – I had been having 1 or 2 migraines per week previously). I’ve also been eating foods and taking supplements which had previously caused migraines, and so far, not one. This is truly remarkable.
I might also mention that my doctor prescribed a month long course of 2 times per week methylcobalamin injections (probably 1000 mcg each) which had no obvious effect. Apparently, my body can’t make use of supplemented methylcobalamin.
I had been getting a handle on fatigue prior to this year after having lost 90 pounds, but I’m now feeling even better after starting the high dose b12.
I’ve just started high dose injections of compounded hydroxo (pre-made stuff contains paraben preservative which I prefer to avoid). It’ll be interesting to see if I find more benefit from the injections than the pills.
I’m 66 years old and, in retrospect, might have had problems with b12 for most of my life. I understand that Celiac disease runs in my family, so that might be why. I rarely eat wheat or other grains anymore.
I found the book after a recommendation from Amazon.com. Thanks so much for writing it.
Your Name: A. Miller
Your Story: I began gradually with my symptoms, looking back. I just figured I was getting older and this came along with the aging. In August 2010 I was having severe asthma symtoms and unable to breathe, any type of walking would set me into an attack. I went to the dr and he found my b-12 at a shocking 110. I began b-12 injections for several months. My level at tops was 300 after many injections. I then went to a blood dr who put me through many tests to determine why this was happening. I am 49 yrs old and they just feel that my body has lost its ability to hold b-12. I was a very sick lady and really thought I was dying. My mental ability was really bad and my energy level was so low. My breathing was bad and my muscle spasms were horrible. I am feeling somewhat better but I’ve began taking liquiod drops of b-12 in addition to my biwkly injections. I look for ways to improve my health so I can be back to normal soon.
Your Name: Cynthia D.
Your Story: Hello Sally and Jeff,
I was diagnosed in 2006 with B12 deficiency. I started out with the cyano injections. I healed very slow. I switched to methylB12/dibencozede treatment in 2009. I am pretty good now. I still have gastric problems on and off, especially after antibiotics. Also vertigo still comes, and goes.
Thanks for trying to bring awareness in this issue. I would love to help in any way I can to also help in that cause.
I really need to start a support group here in my town.
Your Name: Deanna S.
Your Story: Thank you for writing this book. About two years ago I was finally diagnosed with autoimmune PA. LONG story! With the help of your book I have been bold with my gp and refused to take the proton pump inhibitors she wanted me on after the chronic gastritis was found through endoscopy. She assured me she would have a diagram at a 3 wk apt ready to explain (she was quite patronizing) why I had to take them. When the apt came around she said I was right and then explained with her diagram why I was. Had I not been informed by having read your book, I would have probably taken them. It was at this same appointment that I took your book. She dismissed it with obvious disdain saying it wasn’t a ‘medical book’. She did the mma and homocystine tests after I told her about them, unfortunately I had been being treated for several months. When I explained the way I still continued to feel she finally perscribed the treatment protocol in your book of 1 per day 7 days, 1 per week 4 wks, etc. I began to feel better. I am now on 1 a month but by the end of the month feel like I am dragging. I recently asked her to check the b12 serum level at the end of the month. It was 528 which she marked as being ‘at goal’. Before it had been 960 at the beginning of the month. I had also had low iron which has since been treated and now the ferritin is slightly high. I also have a rare vitamin d malabsorption and have to be on 50,000 iu four times a week along with taking citrical twice a day just to keep my vitamin d level in the 50’s. It is very frustrating dealing with a physician who seems to need further medical training just to help me with my pa, not to mention the other malabsorption problems. I tested positive for anti parietal cell antibodies and the endoscopy revealed the atrophic gastritis. All of this is to make a plea. If you know of ANY physician in the……… area who is adept at handling such cases as mine, please send me their name and address and phone number so I can get the help I need. I am not a physician and am quite tired of trying to teach mine. Also, what are your thoughts about what level the b12 should be maintained and should there be a change in the number of shots I take? Thank again for writing this book. My mother has been diagnosed with b12 deficiency since I insisted she be checked, unfortunately her doctor treated her with sl b12 and now says her b12 is ok and she can stop. He never checked her mma, homocystine or for the anti parietal cell or anit intrinsic factor antibodies. I do not know what her level is now, but it had been 198. I also have a cousin who was recently diagnosed for b12 def. treated with a couple of injections and now is taking sl b12 . Her recent level was in the 300’s which her doctor says is fine. She says she trusts her doctor. I doubt the doctors treatment was enough and am greatly concerned about both of them. I am planning on purchasing copies of your book for them in the hope that they will actually read it and be empowered by it. I truely feel that the medical schools have let us all down by not teaching and training the physicians when to look for and how to treat this disease. By the way, I had been to a neurosurgeon who suspected ms and performed a myelogram. After my diagnoses I called his office to see if he had checked my b12. His nurse informed he had not and she never remembered him ever ordering that test! This is truely frightening to me! How many others are out there suffering with possibly permanent nerve damage or worse. I cannot thank you enough for writing this book and for starting the b12 awareness campaign. May God bless you both!
Your Name: Cindy C.
Your Story: Since the beginning of February, 2011, my husband has suffered loss of vision (blurry vision), slowness in physical movement, confusion, short term memory loss, repeats statements. We have seen an opthalmologist, a neurosurgeon, a neurologist, an endocrinologist and primary care. All signs point to B12 deficiency, but not conclusive. Primary Care refuses to give B12 shot; ordered B12 capsules (1,000 mg.) Neurologist is waiting to hear from B12 deficiency specialist at Mass. Gen.
Your Name: Lynn
Your Story: I am a 57 years old female. I had the worst leg cramp of my life when I was 50. It was excrutiating and unlike any other cramp I had ever had. A few days later another one and then the other leg. I was terrified to be alone. What would I do if both of them cramped at the same time? I went to the doctor and told him I had to keep moving my legs so they wouldn’t cramp. He treated me for restless leg syndrome. He first tried a drug for MS, then Quinine. Then I pleaded with him that my legs weren’t restless, I had to keep moving them so they wouldn’t cramp. He finally did a blood draw and found my B12 to be 117. This was 8 months after my initial cramp. He was astonished I had low B12 and told only people in undeveloped countries and the elderly had this. So he had me start B12 injections, once monthly. I wasn’t getting any better. He referred me to a neurologist. She really didn’t know any more than he did. She did give me baclofen, which helped the electrical impulse feelings in my legs somewhat. She did a nerve test, it was normal. Basically nothing else was done for me. It took 5 years from the initial cramp until I was back to normal. Then in October of 2010, I had to have emergency gallbladder surgery. I spoke with my doctor about going under anesthesia and my concern with my b12 depletion. She had me take an injection prior to surgery and that was all that was recommended. I was fine until Valentine’s Day, 2011 (4 months later). I had my first excrutiating cramp again in my left leg. I have tried calling around to see if any physician in the area knows about b12 deficiency other than the basics, no luck. I am basically on my own. I have tried taking my injections daily for 5 days, then waited 2 weeks, back to the same problem. I just recently found your book and it has been a real enlightenment. I just wish I knew how to get a doctor to help me determine how I can replenish my b12. I am desperate and really need help with this. My right forearm is aching, it is my barometer for low b12. After all I have gone through over the past 6-7 years I have finallly pieced together the path the b12 defiency. When I was 45 I underwent dental surgery. I had significant memory loss within 2 weeks. Talked with my physician, she told me that happens to some people when they go under anesthesia. Eventually it improved of months and months. Then when I was 50 I had a colonoscopy with anesthesia. Less than 2 weeks later, my first leg cramp. I know now from reading your book NO NITROUS OXIDE in surgery. Thank God someone has figured this out and I’m not crazy! I have never met anyone else that has had my symptoms or experience. I only wish I knew how to replenish my b12.
Your Name: Carolyn
Your Story: Sally,
My GP recently checked my B12 levels and it came back with a level of 166 pg/ml. They use a reference range of 180-914. I also am very anemic as well. I had surgery in 2009 and have not been able to improve my iron levels by much over the past 21 months. My GP started me two weeks ago with an daily injection of B12 with weekly injections for the next five weeks and then it will be monthly. She also referred me to a hematologist. The hematologist is with CU Hospital and is considered to be an expert in B12 deficiency. I just returned from that visit and while she agreed I needed to receive a full unit of Iron (4 hours of treatment) she was not sure I am B12 deficient. She said my levels would need to be around 50 pg/ml. She also said I was too young since I am 47 and the average age for PA is 71. She said that fatigue is not a symptom of B12 deficiency?? Also, did not seem to think the electrical like shocks in my hands, legs and feet were related. Also, said that since the burning on my feet came and went it didn’t seem to be related. She indicated that my stamina/weakness that has become a serious issue over the past 3-4 months is due to not working out. I told them I have fatigue is beyond anything you could imagine, but they recommended I start a work-out program?????? (At first I thought she was joking, but then realized she was serious.) They seemed to dismiss my vertigo, blurred vision and general weakness. They suggested I might need to see a neurologist. They plan to run more tests:
1) Anti-intrnsic factor antibody
2) Anti-parietal cell antibody
At the same time they said these tests are not entirely accurate. Test #1 if comes back positive would mean I do have B12 deficiency, but if it is negative it does not really mean I am not deficient. They said the only way to really know is if I discontinued taking the B12 injections and retest in a few months. I am not thrilled with this idea because I am really feeling terrible and just cannot imagine feeling this one more day than necessary. After reading your book (on our new Kindle) I felt like I really understood this topic, but must confess to being very confused after the appointment today. At this point, I plan to go in for the 4 Hour Iron IV and continue with the B12 injections through my GP regardless of the hematologists doubts. My only concern is if my GP no longer offers me the B12 injections based on the feedback from the hematologist. I am sure you receive countless emails everyday, but if you have any thoughts for me it would be much appreciated.
Thank you for taking the time to read my email and I really would appreciate any thoughts or ideas.