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Vitamin B12 deficiency is commonly misdiagnosed.

Posted In: Medical Stories 17082 Replies
  • Posted By: Anonymous
  • February 17, 2007
  • 00:51 AM

I diagnosed myself at the age of 21 with vitamin B12 deficiency. The only sign I had was enlarged red blood cells, no anemia. I am now 43 and have been an ER R.N. for 20 years and have also been researching vitamin B12 deficiency and pernicious anemia for 20 years. I frequently encounter patients who have signs and symptoms or are at high-risk for B12 deficiency, but doctors do not test. The one's that rarely do--- are not ordering a more sensitive test than the serum B12 test. All patients should always have a methylmalonic acid test, along with serum B12 (to aid in diagnosis). Out of frustration, witnessing patients who needed to be tested, and teaching doctors how to diagnose B12 deficiency, I co-authored the book, "Could It Be B12? An Epidemic of Misdiangoses," Quill Driver Books, 2005. 12 reviews on Amazon.com (3 from physicians). Many disorders or diseases don't have a treatment--- but B12 deficiency does. It is criminal for patients to sustain neurologic injury or permanent disability because health care professionals are not educated properly on B12 deficiency. This is a totally preventable and treatable disorder. My mission is to get a standard of care change in the early diagnosis of B12 deficiency to prevent poor health, injury, disability, poor outcomes and even death. Major malpractice cases have been won by patients who are permanently injured.
All seniors who fall should always have B12 deficiency ruled out with methylmalonic acid testing. B12 deficiency can cause gait and balance problems, tremor, orthostatic hypotension, parasthesias, confusion, dementia--- which makes a patient high risk for falling----- yet there is no standard of care to check seniors for B12 deficiency when they present with a fall. This is currently a project I am working on. I have seen many patients who have fractured their hip or femur--- who proved to have true B12 deficiency. We are wasting billions of dollars and more importantly affecting millions of lives being ignorant regarding this disorder.
Recent article I wrote for "Nursing 2007" January issue regarding B12 deficiency and the elderly. In addition, anyone with beginning dementia or with a diagnosis of dementia needs proper screening to rule out B12 deficiency. There is a critical window of opportunity to treat B12 deficiency or permanent injury will result.

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  • Just found this site, 4:20 AM - have read and posted to several things but seeing your post just made me cry. I am 66 years old, have suffered for years with fatigue, pain, stomach problems, thryrod, erratic and extra heart beats, and have been diagnosed with everything from MS, MG, Fibromyalgia, Chronic Fatigue, Spinal Problems, Neuropathy, pain sydromes, and of course, stress and depression. I knew I wasn't crazy, and just kept my mouth shut until the pain or fatigue would get so bad I would try again. What is so funny, is that a few weeks ago, went to my primary, told him I was going for a consult with a wonder doctor in NYC, and he looked at my bloodwork and said that my B12 was about 400 (I think) and decided to give me a double or triple shot - don't remember. I noticed I was not crying, and my husband thought I was better with the shot, but I didn'tpay much attention. Went to NYC, and doctor said I had an auto immune disorder (Hashimoto's, dry mouth & eyes, etc, etc,) did a lot of blood work, gave me a shot of methotrexate and told me to inject myself once a week, gave me prescriptions for folic acid, Lyrica, Prednisone - and I am not happy with taking meds anyway, so haven't had anything but first shot of methotrexate, due to take another tomorrow. Don't want to - but it is 2 weeks since I had B12 shot - feel like crying again, and, although I don't sleep well, usually stay in bed, but heart pounding in head and chest and pain and cramping in feet, ankles, legs and hips were so bad had to get up at 1:00AM after lying there for only about 2 hours. Doctor in NYC said you can only get B12 shots every 6 months, primary told my husband I can have them weekly if I want to - Do you think I should do this and forget all the meds I was prescribed - I like to do only one thing at a time so I know what helps and what doesn't, and nothing has helped me over the years. I will be ordering your book. Hope that this was my lucky day. Thanks for your info.Talk about "I was not crazy"--- I knew I was not crazy, but I had all these symptoms. I was willing to try anything- even the unorthodox approaches to my unexplained condition.A NAET practitioner told me that I had developed an allergy to Vitamin B complex. So that explained why in spite of me taking the best quality of Vitamin ever made, I had not been able to recover completely.I did NAET treatment for allergies to vital nutrients- ufff I feel 10 years younger. I was allergic to Vitamin B complex, calcium, sugar, egg protein.I am also allergic to Vitamin T. You should try NAET and make sure you will be using the nutrients.Sincerely,Eatafruit78/
    Eatafruit78 960 Replies Flag this Response
  • Eatafruit78,Thanks for writing on this post as I was going to also suggest NAET. I cannot believe how much better I feel after this treatment! IT is just simply fantastic! I am glad you have also had such good results with this:) It really addresses the WHY of B12 deficiency. Often it is due to malabsorption problems and allergies. allergies are a major cause of chronic disease, and NAET is the only treatment available that really eliminates the allergy. I can't recommend this highly enough. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Eatafruit78,Thanks for writing on this post as I was going to also suggest NAET. I cannot believe how much better I feel after this treatment! IT is just simply fantastic! I am glad you have also had such good results with this:) It really addresses the WHY of B12 deficiency. Often it is due to malabsorption problems and allergies. allergies are a major cause of chronic disease, and NAET is the only treatment available that really eliminates the allergy. I can't recommend this highly enough. Best wishesDOMMy pleasure. We are on the same page. People often think that allergies are like red rash or hives only. In the broader sense, allergies are produced by anything that does not "flow" with our body's energy. Even not been able to use nutrients can be considered an allergy.Nambudripad is ahead of her time- but she figured out how to climb the hierarchy of the body and go up to the Nervous System- which really is controlling the Immune System.If anyone thinks that the Immune System can become a *****d off warrior, wait till you experience what a *****d off Nervous System can do.We need to reason with it, not ask him to shut up. Peace, Love and Light to Everyone.Warm RegardsEatafruit78. (Make sure you eat-a-fruit w/o pesticide). :)
    Eatafruit78 960 Replies Flag this Response
  • Sally, I just have to ask: are you familiar with NAET? I am wondering if so, what your thoughts are on it as it relates to B12 deficiency, or more accurately, B12 malabsorption. Best wishesDOM No I am not familar with NAET--- just googled it--- and it talks about food allergies causing illness. Yes, this can happen---- similarly to how wheat (gluten) causes celiac disease by destroying the lining of the small intestine--- which causes numerous nutritional deficiencies (such as B12 deficiency and iron deficiency). So yes, it would not be outrageous for a person to have an unknown food allergy that destroys the lining of the stomach causing atrophic gastritis----- funny you should mention this--- I wrote a 66 page paper for Wayne State University in 1988--- describing how this might be plausible--- titled: "Effect of Unknown Food Antigens Causing Atrophic Gastritis and Pernicious Anemia: Presently misconstrued as autoimmunity." My hypothesis was: Is the medical community confusing autoimmunity with hidden food allergies? Are many cases of pernicious anemia falsely labeled as an autoimmune disease, but actually are caused by manifestations of a chronic allergic immune response, which over time leads to atrophic gastritis, and susequently perncious anemia? Thus specific food antigen(s) could be the pathogenesis of numerous disease processes. The reason I began to ponder this was I have juvenile pernicous anemia-- at the age of 21 diagnosed--- probably had it in my late teens, and I have suffered from chronic allergies my entire life--- so to me it seemed plausible, so I studied each in depth, perncious anemia, B12 deficiency, chronic atrophic gastritis, food allergies and the immune response, celiac disease, autoimmunity, the immune system--- and then showed how all were interrelated---- it was the beginning of my research and study regarding B12 deficiency. To prove it---- you would have to have people who have chronic atrophic gastritis---- which the stomach's glands rejuvenate, parietal cells become functional again,and normal acid secretion takes place, and then B12 deficiency would not result. But there are no studies like this that I know of---- the individual person would have to figure out what they are allergic to and never consume it--- and show rejuvenation of the stomach lining. This would parallel to celiac disease--- in that once the offender (gluten) is removed the body heals itself and the lining rejuvenates.Too bad we don't have any data regarding this--- or maybe this is not the case in this disease process.
    Anonymous 42789 Replies Flag this Response
  • My hypothesis was: Is the medical community confusing autoimmunity with hidden food allergies? Are many cases of pernicious anemia falsely labeled as an autoimmune disease, but actually are caused by manifestations of a chronic allergic immune response, which over time leads to atrophic gastritis, and susequently perncious anemia? Thus specific food antigen(s) could be the pathogenesis of numerous disease processes.Thanks for your response, Sally, and I think you are right on when it comes to this. There is just a huge increase in the diagnosis of autoimmune diseases today, but no one is getting to the CAUSE. I think Dr. Nambudripad has found this and her treatment, NAET, is revolutionary in its treatment of allergy and the immune response.Best wishesDOM
    acuann 3080 Replies Flag this Response
  • The methylmalonic acid test (MMA) is specific for B12 deficiency, and is elevated when B12 deficiency exists. Homocysteine also rises when one is B12 deficient, but it also rises in folic acid deficiency, B-6 deficiency, hypothyroidism, renal failure or insufficiency. So your doctor needs to do the MMA test. I have seen people with normal homocysteine but elevated MMA. It is interesting that your dad had a B12 deficiency. It could be that your family has undiagnosed celiac disease--- which could cause a B12 deficiency. Did your dad ever get a reason or diagnosis of why he was B12 deficient? Yes, your symptoms could be MS--- but it could be B12--- and you did have a low value--- ask your doctor what it was. Sometimes doctors make the mistake that if your antibody tests come back negative (intrinsic factor and parietal cell antibody) then you don't have a B12 deficiency---- this is wrong--- for there are many reasons a person can have a B12 deficiency. Since you have constipation, weight gain---- I'm sure they checked your thryoid (with thyroid antibodies). Celiac disease (gluten enteropathy) can cause constipation, fatigue--- from numerous nutritional deficiencies. Your adrenal glands should be checked out. At least your doctor checked out your B12 and is doing further tests--- that is great----just make sure the MMA test and serum gastrin (blood test) was also done.In a previous communication, I wrote about celiac disease and the IgG and IgA antibody tests that need to be done, along with stomach and small intestine biopsy. Your father having a B12 deficiency and then having a stroke is because untreated B12 deficiency causes elevated homocysteine (Hcy)--- (hyperhomocysteinemia) which causes early vascular disease (strokes, heart attacks, pulmonary embolism, DVT's), because excess Hcy causes your blood vessels to lose their elasticity, making it harder for them to dilate, and damaging their inner lining. That damage, in turn, allows cholesterol, collagen, and calcium to attach to the inner walls of your blood vessels, where they can from sticky deposits called atherosclerotic plaques.Your doctor needs to test your adrenal glands, cortisol levels and antibody for the adrenal gland--- check you out for Addison's disease--- which is an autoimmune disease. Make sure your doctor did the MMA test before anyone gives you a B12 injection. Also, you do not have to be anemic to have a severe B12 deficiency---- a common misconception amongst health care professionals. SallyThank you so much for the reply! I really appreciate it. This whole thing has me so anxious and it keeps dragging on and on.My father went on a really stupid starvation diet to lose weight and hardly ate anything for two months, which I assumed was why his B12 and electrolyte levels were so low. But, I inherited other allergies from him, so maybe I inherited a gluten intolerance from him, too? Can a person's body suddenly go into a general agressive allergy mode? I've never gotten so many hives from bugs in my life as I have in the last month or two.When I was researching the various causes of B12, I considered celiac disease because so many of the symptoms seemed to match, but my doctor kind of shrugged it off. Should I ask her to test for it or should I ask the allergist to test for it? Or some other kind of specialist? I do think that celiac disease could be an explanation; I ate half a box of matzoh to test it out and ended up with huge amounts of gas and exhausted through the following afternoon.Now that you mention "intrinsic factor", I think I did see "IF" written on the blood test form and that came back normal. I'll try to talk my doctor into a urinary MMA. And try to get her to tell me what she's testing for and why. I've never heard of Addison's Disease. I'll google and talk to my doctor about it. Thanks for the suggestion!At what B12 level (both for blood and MMA) should I ask for a B12 shot? My doctor didn't seem at all concerned about my B12. She didn't even suggest that I take a vitamin pill, though she told me in the past that she thinks that taking vitamin pills is unnecessary.Also, if I take the B12 lozenges, should they just be B12 or should they be the ones that also include Folic Acid and B6? I started taking the plain B12 ones this past week because I was so worried, but I guess I should stop so that it doesn't mess up the MMA. Thanks again. I've learned far more from this thread than I have from my doctor.
    Anonymous 42789 Replies Flag this Response
  • Thank you so much for the reply! I really appreciate it. This whole thing has me so anxious and it keeps dragging on and on. My father went on a really stupid starvation diet to lose weight and hardly ate anything for two months, which I assumed was why his B12 and electrolyte levels were so low. But, I inherited other allergies from him, so maybe I inherited a gluten intolerance from him, too? Can a person's body suddenly go into a general agressive allergy mode? I've never gotten so many hives from bugs in my life as I have in the last month or two. When I was researching the various causes of B12, I considered celiac disease because so many of the symptoms seemed to match, but my doctor kind of shrugged it off. Should I ask her to test for it or should I ask the allergist to test for it? Or some other kind of specialist? I do think that celiac disease could be an explanation; I ate half a box of matzoh to test it out and ended up with huge amounts of gas and exhausted through the following afternoon. Now that you mention "intrinsic factor", I think I did see "IF" written on the blood test form and that came back normal. I'll try to talk my doctor into a urinary MMA. And try to get her to tell me what she's testing for and why. I've never heard of Addison's Disease. I'll google and talk to my doctor about it. Thanks for the suggestion! At what B12 level (both for blood and MMA) should I ask for a B12 shot? My doctor didn't seem at all concerned about my B12. She didn't even suggest that I take a vitamin pill, though she told me in the past that she thinks that taking vitamin pills is unnecessary. Also, if I take the B12 lozenges, should they just be B12 or should they be the ones that also include Folic Acid and B6? I started taking the plain B12 ones this past week because I was so worried, but I guess I should stop so that it doesn't mess up the MMA. Thanks again. I've learned far more from this thread than I have from my doctor. I wrote back to you already--- somewhere else it will show up---but I forgot your other question, yes it is good to take a good B50 complex---all the B vitamin work well together--- the only problem is 50mcg of B12 in this supplement is not enough for a person with a B12 deficiency--- so they will have to take separate B12 lozenges at a high dose and/or get injections. They do make supplements that have a mixture of B12, folic acid, and B6--- one that is by prescription is called Metanx--- and it is the one that has 2,000mcg of methyl-B12, 2.2mg of folic acid, and 25mg of B6. So whoever has good prescription insurance or a decent co-pay, this may be more cost effective, plus it has the methyl-B12. But other companies are also reputable, Life Extension, Jarrow, etc. Sally
    Anonymous 42789 Replies Flag this Response
  • Yeah. I think I need to find another doctor. It's not just that she's so uncommunicative and lacking in much of a bedside manner. She doesn't seem to know much about B12. When I first told her that my father had a stroke and the doctors thought it was partly due to low vitamin B12, she told me that B12 has nothing to do with strokes. (She did eventually test me for homocysteine, though, so I think she might have figured out the connection at some point.) When she first told me my B12 was a little low, I asked her what foods had B12 in them and she said meat and bread. (Yes, bread.) I know from your book that this information is not the greatest, so I kind of question how good she is as a doctor. I don't eat much red meat (or bread for that matter, LOL), but I do eat plenty of chicken, seafood, dairy products, and eggs. So, it seems unlikely that diet explains my B12 levels. I don't have an eating disorder and haven't had nitrous oxide. Don't know what a PPI is. I'd need a prescription, though, and my doctor won't give it to me since she doesn't even think I need vitamin pills. So, I'm going to try finding something else that contains what you recommend. The doctor won't order another MMA since she thinks my B12 levels already are perfectly normal. I'll just have to see how I feel after taking the B12. Thanks again for posting here. Also, thanks to both you and your co-author for the book. I thought that it might be a little difficult to understand because I have no science background, but I was pleasantly surprised to find that it's quite easy to follow. If anyone has a particular sublingual methylcobalamin product they've used and liked, please post. Thanks! PPI's are (Proton-pump inhibitors) a classification of drugs use to treat gastric reflux disease (GERD). What PPI's do is block's the stomach's lining cells (parietal cell's) from excreting hydrochloric acid. Hydrochloric acid is needed to absorb vitamin B12 properly, so it only makes sense that chronic use of these drugs place a person at risk for B12 deficiency. The parietal cell also excretes intrinsic factor (which is also needed-- to absorb B12). These drugs were only really intended for short-term use in patients with ulcers to help heal them-- and the drug companies state in their literature the use for 2 months. Beyond one year of use the drug companies don't state what can happen because it has never been studied. But, people are on PPI's for years--- sometimes 5 years, 10 years, (one case I heard was 20 years)! This is okay, as long as your doctor screens you for B12 deficiency--- but the problem is their is a knowledge deficit in the recognition of B12 deficiency from doctors and other health care professionals, as well as the proper work-up of B12 deficiency. (a serum B12 is not good enough) In essence, taking PPI's for years creates what perncious anemia patients have (little or no stomach acid)----and a person will get B12 deficiency over time. But everyone is different how long it will take because everyone is an individual and your doctor has to take into consideration your risk factors, other past medical history, other drugs taken, etc. This simple physiological fact that for vitamin B12 to be absorbed that hydrochloric needs to be present is what doctors are overlooking. I don't think the drug companies state this in the PDR--- because the drugs aren't intended to be used for years! But, the drug companies must know--- regarding sales. So, if the drug company is not being responsible--- writing it out for the doctors to check it out, and the doctors are forgetting the basic human physiology and not testing their patients---- then anyone taking PPI's over 1 year needs to be their own advocate and demand proper testing. You must be monitored yearly with (B12, MMA, and serum gastrin). (if any patient on PPI's have signs or symptoms of B12 deficiency--- they must be tested immediately). I really do think that if a doctor is going to place a patient on a GERD drug (PPI) for a long period of time--- they should get a base line of where that patient is at (with B12 testing--MMA, gastrin) and then place them on a high-dose SL B12 supplement-- to prevent a B12 deficiency. Anyone out there on chronic PPI's should be checked. As an ER nurse (daily we do assessments including medical history, surgical history, medications and allergies. So I stop and ask patients how long they have been on their PPI drugs (and the response is typically over 5 years!) They are not taking B12 supplements, nor getting shots--- many of these patients are elderly--- and many are highly symptomatic for B12 deficiency. Chronic use of PPI's is another factor adding to the epidemic of B12 deficiency (unknown to doctors, health care professionals, the drug company, or the public). A woman recently wrote on this forum regarding her 5 year old daughter who had parestheias---had an elevated MMA----this means B12 deficiency! She was on a PPI since 9 weeks of age----this is really not talked about or documented--- but I predict in the next couple of years, drug companies will be covering themselves mentioning monitoring patients with B12, MMA, and serum gastrin. Sally
    Anonymous 42789 Replies Flag this Response
  • I should also add that I am being ruled out for a thyroid condition. My TSH was 3.49 in February, which is slightly high with new standards, and my FT4 was 1.2. My newest tests show my TSH as 1.22, which is pretty good and my FT4 is 0.9 (very low normal). I have 2 very small nodules on my thyroid which are being watched by an endocrinologist. B12 deficiency is common with thyroid conditions, right? I'm just worried my B12 is already low and I feel like it is a good idea to find out.Hi Melissa,I will respond to both your posts here. Yes, you should have a baseline B12 and MMA test done, since you have an elevated RDW, lower HgB and Hct. But, you should also have your iron checked (serum iron, ferritin, TIBC and transferrin---because that too will lower you Hgb, Hct, and elevate the RDW.Since you have 2 nodules on your thyroid---you again should be tested for the B12--- becaue autoimmune thyroid disorders put one at risk for autoimmune pernicious anemia. If everything comes back normal and you remain on the Nexium--- you will have to be retested in a year. If the Nexium doesn't help your symptoms--- it would be silly to keep you on it. If you end up having an iron deficiency--- they need to find out why. People who have a lot of allergies, and nutritional deficiencies, and GERD often times have celiac disease or gluten enteropathy. So it might not be a bad idea to see a gastroenterologist and have them test you --- and do an EGD--- at least you would know if you really need the Nexium or not.Sally
    Anonymous 42789 Replies Flag this Response
  • Hi Melissa,I will respond to both your posts here. Yes, you should have a baseline B12 and MMA test done, since you have an elevated RDW, lower HgB and Hct. But, you should also have your iron checked (serum iron, ferritin, TIBC and transferrin---because that too will lower you Hgb, Hct, and elevate the RDW.Since you have 2 nodules on your thyroid---you again should be tested for the B12--- becaue autoimmune thyroid disorders put one at risk for autoimmune pernicious anemia. If everything comes back normal and you remain on the Nexium--- you will have to be retested in a year. If the Nexium doesn't help your symptoms--- it would be silly to keep you on it. If you end up having an iron deficiency--- they need to find out why. People who have a lot of allergies, and nutritional deficiencies, and GERD often times have celiac disease or gluten enteropathy. So it might not be a bad idea to see a gastroenterologist and have them test you --- and do an EGD--- at least you would know if you really need the Nexium or not.SallySally, thank you for the response. I have thought the same thing about the Nexium. It seems strange to me to rule out a condition through medication. My doctor has discussed possibly doing a barium swallow, but nothing else. From what I've heard/read, a test that is done is a 24 hour pH monitor. I don't understand why this hasn't been mentioned as an option. I'm fairly sure that I do not have celiac disease or gluten enteropathy because these conditions have more gastro-intestinal symptoms, right? My problems are primarily in my throat.Lump in throat feeling (like something is stuck there)One sided sore throat (far down, in the neck area)Raw throat (everyone always tells me that its red...sometimes even when its not sore)These symptoms prompted the beginning of the testing. My GP, school health center and ENT have all suspected reflux, but I never believed it. I've never had problems with heartburn or anything, so I was surprised when I heard this. I'm also having a neck CT to check for other issues, since this is where the problem mostly lies.I used to donate blood a lot, but I frequently was turned down as a donor because my hematocrit was not high enough. When I was able to do it I was usually right at the required numbers. When I gave blood I would feel awful in the time afterward. I have since given up on doing it for the time being. I don't feel that my health is good enough along with not having the time or energy to do it. I appreciate your quick response. Thanks again.
    MissMelissa 10 Replies Flag this Response
  • Here is a list of related symptoms, symptoms and signs of individidual and combined methylb12, adenosylb12 and folate deficiencies. It's an interesting exercise to see how many of these a person has. While many of these symtoms have possible multiple causes, they also all have one "same cause". I was amazed to see that symptom lists for b12 deficiencies varied considerably from country to country. This is a combined list of all the symtoms from research done in many countries. There are still more to come. Is it any wonder that b12 deficiency is difficult to spot? It can look like many other things at the same time.mouth sensitive to hot and coldsore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habits. abdominal pain loss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptomspalenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature formerly known as megoblastic madnessirritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysisweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasantalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid wordblurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive Lhermittesneuropathiesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of details and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesdecreased deep tendon reflexPositive bilateral Babinski refleximpaired white blood cell responsepoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alertelevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected foliculesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurs.poor hair conditionpainfully tight muscles, especially legsfrequent muscle spasmsthin nailsBariatric surgeryDilantinrelative ever needing B12 shots or supplementsAS INFANT OR CHILDdelayed myelinationfailure to thrivedelayed speechdepressionfrequent toncilitis until removedfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for months sometimesheadachesgrowing painsskin problemsdandruffallergiesasthma
    Freddd 3576 Replies Flag this Response
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  • Hi Sally, See that list of symtoms and signs I posted? I had about 2/3s of them starting with delayed myelination as an infant/child. At the time I started methylb12 I had over 70 of those. I was a total basket case with terribly severe FMS with no energy at all, burning lactic acid type pain in all my muscles for 16 years, severe pain in the muscles all over my body including the 18 firbro points, uncontollable spasms all over my body (dilantin and valium controled these sort of. I didn't seleep more than 5 hours a night for decades and it wasn't restorative. There was zero recovery from exercise. An added pain from exercise might last for months and months. I was in pain management for 3 years prior to trying methylb12. No doc EVER suggested testing serum levels. As soon as they found out I was on 1000-1500 mcg of oral cyanocobalamin and 400-800 mcg of folic acid they elimiminated from thought the posibility that it was b12 deficiency. I went to all kinds of specilists. My testosterone dtopped through the floor. I have benn taking thyroid extract, synthroid or levothyroxin since age 8. I'm 59 now. I had IBS, burrning bladder, beef-red sore burning tongue, burning mouth, frequent reflux and vomiting, severe dizzyness, nausea, anorexia, protein specific anorexia, polyneuropathy - peripheral, autonomic etc neuropathys, numbness in feet muscles (still present), blurry/double vision in each eye, brisk reflexes, cracks around corner of mouth, allergies, asthma, burning veins, severe chronic daily headaches, severe 3-5 day killer headaches each 2 weeks as regular as a clockwork, skin problems, edema - 80 pounds of excess water, high blood pressure, trouble breathing, frequent pneumonias, MVC 99.8, MCH 38 (since methylfolate started 3 months ago down to 96.3 and 34.1 respectively), changes in platelet volume and count, CRP 6, now down to Don't be mislead about the injection versus sublingual. For most people sublingual methylb12 of the right brand is every bit as effective as the shots. I am uniquely situated to compare how much sublingual must be consumed quickly, saturating all the mucosal tissues of the mouth for an hour or two to see if it is possible to absorb enough that way as to reach the blood saturation point at which the kidneys excrete it. I am designing a colormetric comparison system that will estimate the amount of b12 by visual scale comparison in a white toilet bowl of know capacity by daylight comparison. The just visible amount for injecting for me is 4.375mg. Going up to 5mg makes several Just Noticable Difference differences in shade. I can calibrate in mcg what each JND in shade indicates. My internist is just watching me, fascinated. My first appointment with him was 3 months before I first started methylb12. I was visibly different each 3 weeks to people who hadn't seen me in that long. It takes about 3 months for that much visible change now. He didn't dismiss me from his practice because he didn't feel threatened by having missed all this diagnosis since I had just started with him. Nobody would test me. In fact my suggestions or insistance on tests just convinced the docs even more that IAIYA (Its All In You Head). I actually had the audacity to think that the constantly changing array of symtoms actually meant something, being a systems analyst. Insisting that something was really wrong got me dismissed from several practices. As a systems analyst I integrated 5000 hours of research reading (this is something I do well) and can explain whats behind the constantly changing symptoms and all of that. Each step of the way, each additional supplement was based on journal articles pointing at it. I also had my lifetime history and that of my 3 children. I could see the same patterns with them as I had. I predicted to my internist that my MCV and MCH would come down with the methylfolate since it hadn't with the methylb12. Sure enough, they did. I researched on the internet. GOOGLE supplied the answer when I could ask the right question. I couldn't afford all they tests anyway, I did the ultimate test. I went down to a local healthfood store and bought a bottle of methylb12 for $8. The effects were not subtle. I began to have answers 45 minutes after I laid my money down. They were very powerfull and immediate. Symtoms went wild for a few days as 600+ stalled reactions all started up. In one hour the lights came on decisively, I no longer felt extremely fatigued, a lifelong depression started lifting a lot. And many pains all went wild, with me more aware sharply and clearly aware of them than I had ever been. Many symtoms went wild. I could immediately walk up the stairs without stopping and resting every couple of steps. In 10 days the burning bladder, burning tongue and burning muscles were all normal. In 9 months the headaches were totally gone. Constructing the pharmacokinetic calculator (adapted from a single compartment model I use for modeling time release opioids and will be on the market soon) allows me to make some statements. The data I based the calculator on was purely journal articles that included serum halflife information. Based on a population with an mean serum level of 700 (but still 100% with neurological sysmtoms) the longterm decrease rate was 1.89% per day which amounts to an approximately 36 day halflife. Let's just use 2% for easy talking. At a 2% daily loss rate a person has to absorb 14 mcg per day to maintain equilibrium at a blood level of 700. Except for vegans who have a ZERO intake of human active cobalamin, a person who intakes the same 14mcg/day and has a serum level of 100 has a daily loss rate of 14% instead of 2%, or they are only absorbing 2mcg per day or some combination. Whatever the exact numbers are, an equilibrium serum level indicates the long-term net absorbtion/excretion. It doesn't say which symtoms people will have. Sublingual appears to allow approximately 10% of methylb12 to be absorbed as compared to the 1% absorbtion that can occur in the intestines in the absence of intrinsic factor. This exact percentage is what I am going to attempt to determine with the colormetric analysis. With all of the profound neurological changes, mood changes and personality changes still going on I am not remotely the same person I was 25 years ago. First I lost almost everything on the way down. And then I reformed as, at least it seemed like this, various parts of my brain started waking up and working, working better or differently. I am really quite literally a new person. The 16 years of severe crisis have faded like a nightmare, it doesn't even seem like me any more. I don't feel the same. I don't think the same. I'm not remotely the same. My wife was the last person in my life from "before" and she divorced me 3 years ago saying that she couldn't go though all those changes again, she couldn't put up with it any longer. The person she married was a professional photographer, ski patrolman, intellectual, active. After the car wreck I couldn't carry the cameras and do the jobs afterwards. I haven't skiied in 20+ years due to b12 deficiency. My intellect became severely impaired during those years, bridge, chess, scrabble etc ceased to be fun or intresting and we had nothing to say to each other the last 10 years. My sense of smell changed and I couldn't stand the way she smelled. She couldn't touch me without it causing pain. The physical part of our relationship disappeared with the pain and malfunctioning neurology. I couldn't do anything, what she wanted, what I wanted, made no difference. The b12 deficiencies destroyed every part of our relationship.
    Freddd 3576 Replies Flag this Response
  • I need some advice, I do not know who to listen to anymore. I just finished reading your book and found it very interesting and enlightening. Now, for my dilemma. As I stated before, I have undiagnosed celiac disease. I started having major symptoms when I was pregnant with my now 30 yr old son. From that time on, I dealt with tummy problems. When I became pregnant with my 4th son, who is now 26, I became very ill. No answers from the doctors, the gastro I saw, of course told me, IBS, which we all know means, I be stumped! After the birth of Joe, I went on birth control pills and was sick 5 out of 7 days a week. Soon I was pregnant with my last child--now I know it was because I was not absorbing the birth control pills because of gluten. I was so ill while pregnant with Holly, that I lost 40#. She was born with a birth defect, no hip socket on the left side, and suffers to this day. She was 17 when I finally found out about celiac disease. My sister was diagnosed with it and I was newly divorced, with no insurance, no money, so I went gluten free too. That was 7 yrs ago next month. I can't be doctor diagnosed now, I will not do a gluten challenge, I can't be sick for 3-6 months just to have a piece of paper that says I am what I already know. I know I have absorption problems, I also have several additional intolerance's. Not only can I not have glutens, I can't have soy, corn, rice, nightshades, tapioca, red meat, and several other items I would not eat normally anyways. Now, to the dilemma. I have been taking 2400mcg of cyanocobalamin daily for well over a year and 1200mcg of the same for probably 8 months before that. I had tried the methylcobalamin before this and it did make me feel ill. No one told me then that it probably was working well for me, so I switched to this brand. On Thursday I had a EMG done. A neurologist does the needle part of the test and I asked him about B12. My regular neurologist would not listen to me when I asked questions. This neurologist, just as the others, told me I can't be celiac without diagnosis. So, fine, call me gluten intolerant, which there is no diagnosing for and know--I CAN'T HAVE GLUTEN! So then he says, "You must have carbs, you simply must, don't tell me you can't eat rice, there is nothing in rice that can bother anyone." WHATEVER! So then he asks about meat--I tell him no red meats. He frowns and tells me that I should not use B12 without a deficiency. Tells me to stop the B12 now and be tested in a month to find out if I am deficient. According to your book, I have already ruined testing. What do I do? These doctors can not hear me, they talk at me, they tell me I don't know what I am talking about. Who lives in this body, who slept on the toilet for years, who missed family gatherings because she couldn't leave home, who has panic attacks still because of the chemical imbalances in her brain--who knows this body better than anyone else?????? ME, ME, ME!!!! I do not know what to do now. I had to have another MRI on Thursday and had to take Xanax to do it. Thank God that doctor was understanding and believed me. The neurologist who did the needle part of my EMG broke two blood vessels which hurt so bad. Then yelled at me about food. I feel like an experiment. Playing in traffic sounds good about now!!! Deb Hi Deb, I would see a nutritional doctor (there are MD's and DO's that specialize in this now). I believe you that you have celiac disease--- and it would be somewhat stupid to start eating gluten to prove it---while injurying your body. When you have celiac disease--- you get numerous deficiencies (B12, iron, calcium, protein, etc.) You have been gluten free now for 7 years--- but maybe your body is still deficient in other nutirients--- this is where a nutritional doctor would be very helpful-- and guide you with an eating plan--since you have other intolerances. I would also go on line to a celiac--gluten chat room and see if others could give some advice etc. Also, there a numerous books on celiac disease---one recommended by someone was I believe by Dr. Green--new one that is out (I think it is has something like "hidden epidemic" in the title. There is also now a book called "Celiac for Dummies"--- even though you know a lot about it already---there may be something new you will learn--or referrel to doctors that speicalize in this, etc.Yes, taking such high dose B12 for so long will absolutely screw up your tests. You could try the B12 injections---either hydroxocobalamin or methylcobalamin. Because you are very sensitive to numerous things--- you may want to try methylcobalamin injections that are preservative free--that they make up for autistic children. Hopewell Pharmacy in NJ is a compounding pharmacy (and I'm sure there are others that will make up this also). But I believe you have numerous deficiencies---especially from the diet you are on--- so therefore, you must see a nutritional doctor --- or even an environmental doctor that specializes with people with numerous food--environment allergies. There may be some things that you once thought you were intolerant to--because your intestinal mucosa was still injured from the celiac disease---- but you may be able to now consume. Sally
    Anonymous 42789 Replies Flag this Response
  • Hi Deb, I would see a nutritional doctor (there are MD's and DO's that specialize in this now). I believe you that you have celiac disease--- and it would be somewhat stupid to start eating gluten to prove it---while injurying your body. When you have celiac disease--- you get numerous deficiencies (B12, iron, calcium, protein, etc.) You have been gluten free now for 7 years--- but maybe your body is still deficient in other nutirients--- this is where a nutritional doctor would be very helpful-- and guide you with an eating plan--since you have other intolerances. I would also go on line to a celiac--gluten chat room and see if others could give some advice etc. Also, there a numerous books on celiac disease---one recommended by someone was I believe by Dr. Green--new one that is out (I think it is has something like "hidden epidemic" in the title. There is also now a book called "Celiac for Dummies"--- even though you know a lot about it already---there may be something new you will learn--or referrel to doctors that speicalize in this, etc.Yes, taking such high dose B12 for so long will absolutely screw up your tests. You could try the B12 injections---either hydroxocobalamin or methylcobalamin. Because you are very sensitive to numerous things--- you may want to try methylcobalamin injections that are preservative free--that they make up for autistic children. Hopewell Pharmacy in NJ is a compounding pharmacy (and I'm sure there are others that will make up this also). But I believe you have numerous deficiencies---especially from the diet you are on--- so therefore, you must see a nutritional doctor --- or even an environmental doctor that specializes with people with numerous food--environment allergies. There may be some things that you once thought you were intolerant to--because your intestinal mucosa was still injured from the celiac disease---- but you may be able to now consume. Sally One other thing--- all your children should be tested for celiac disease. And your one child with the hip, cleft lip problem at birth---absolutely should be tested for B12 deficiency ---using the MMA, Hcy, B12 test. Sally
    Anonymous 42789 Replies Flag this Response
  • Hi Sally, I'm going to give you some more early history. I never went out for halloween until first grade because I was sick every year at that time. I had an average of 6 streps a year lasting about 2 weeks each. I missed 25% of the school year k-12. I would never have survived infancy without pennicillin. My toncils got infected early and never completely cleared up. They were removed while infected after they waited 2 years for a noninfected opportunity. I had swolen glands in my neck my entire childhood. A doc, at age 18 commented "Undoubtably just scar tissue now". Ten years later after 16 grams of vit C a day (ala Linus Pauling, "How much vitamin C is enough?" Pauling's answer "Until you stop getting sick") for 2 years, I had stopped getting sick, and for the first time in my life my neck glands were not swolen. I started taking vitamin C for a persistant drug resistant urinary track infection. I started with 1 gram twice a day. The symptoms were gone 2 days later. I discontinued the C a year later and it was back in a week. Again, I took the C and haven't stopped. At 4 grams a day my streps stopped immediately. I have had only one or two with my children in the 35 years since. When I get swolen glands now, it means something. The other affliction I had was that a simple cold vitually always went into prolonged bronchitus lasting months. I have had numerous "viral" pneumonias, 2 bacterial. Before methylb12, my mucous was very thick and sticky, like sticky jelly, not runny and slippery. It was very difficult to cough up. I had sinus problems from time to time for the same reason. The change in the mucosal tissues is part of the changes that b12 deficiencies make to epithilial tissues. Then I had "growing pains", a predictor of FMS, Osgood Schlatter's, associated with b12 deficiency, dermatological symptoms that can be caused by b12 deficiencies, easily irritable stomach and intestines that became IBS (b12 deficiency), allergies, allergic asthma (both associated with b12 deficiencies). Any illness, injury or vaccination could trigger a mysterious response of horrid fatigue and body pain (b12 deficiency), nausea and vomiting and dizziness (all b12 deficiency), "viral" pneumonia that lasted for months. I was given a "basal metabolism" test at 8 and put on thyroid extract (hypothyroid assiciated with b12 deficiency). I put on watery fat that seemed impossible to remove even on a fully supervised diet with lots of exercise. I was always a floater in water, until last August. I am an extreme mesomorph in body type. My shoulders and chest are large. At 212 pounds my waist is 37 and I wear a size 50 suit jacket. And I sink when I exhale. At 200 pounds my waist is 36 and I probably could fit a 48 jacket. At 180 pounds my waist is 34, and that's as small as it gets. I hope that I will fit in a 46 jacket then. I spent years in the insurance industry. Because of my combination of sizes I have custom or semi custom suits, a closet full at all sizes between 175 pounds to 280 pounds. Something fundamental has changed. I sink now. No more watery fat. I can easily take off weight just by eating a little less and exercising a little more. This is the first time in my life that this is true. I have some muscle definition for the first time in my life. Here I am 59 and my body has never looked better. My skin has never been better. My libido, after having been absent for about 20 years is back. There has really been only one drawback that I am aware of to the entirety of my program. 25 years ago I was going through a typical male pattern balding. That stopped cold for 20 years and now it is back full force. At least I have all my teeth and plan to keep them if I have a choice.
    Freddd 3576 Replies Flag this Response
  • I am reading CBC levels, yet I do not understand. Which levels are what? Should they be on the high side, on the low side, in the middle. You are all correct about testing B12 levels, in all the blood tests I have had in the last 2 yrs, only once was B12 tested for and that was at my request. At the time, I was taking 1200mcg daily and my level came back at 1237 with the range being 200-1100. The doc immediately decided B12 was not a problem for me. At the time, folate, serum was 11.7, the range being >5.4. This test was done in Oct 2005 and it was a non fasting test. Sally, I did ask all my kids to be tested for celiac disease and I have told 3 of them so far that they should have B12 levels checked. The son I told you about with high BP, Hasimoto's, etc is on state assistance for now--I'm hoping they will allow this test be done. His doctor will not test him at this time for celiac disease because he feels, "It is not necessary to test you at this time!" Another son requested to be tested for diabetes and celiacs and his doctor said to him, "You don't look celiac or diabetic, it's not necessary to be tested, just adjust your diet." Ignorance, is running rampant, at least that is how I feel. Do celiac's have 2 heads, is that why he doesn't "look" like he has it? I am not sure I ever "looked" celiac either, if his meaning is a celiac must be thin. When my intolerance's are in full force, I gain weight. At my sickest ever, I was the heaviest I have ever been. I just wish I could find the answers I need.Dear-Read the book "Never Be Sick Again"- by Raymond Francis- it is an eye opener.If you can afford it- try BIOSET or NAET. naet.com. At least read about it.Try to get a Bioset or NAET doctor that can give you a discount or a payment plan or something. Testing for celiac is not necessary at this point- isn't that painful, risky and expensive?. NAET and Bioset can test you for all allergies and reverse the allergy! Yes- it can cure you too.There are message boards out there where NAET on babies and childrens is discussed all the time.The real celiac is supposed to be a genetic disease- I don't know how everyone now has it. Conventional Medicine is not necessary more reliable that its new counterpart NAET.I had so many intolerances- and I was really overweight- after reading Never Be sick Again and starting NAET I lost all the weight.I went from a size 12p to a healthy 2p - with a B cup.I wish the best!Sincerely,Fruity.As far as B12 goes- if you area allergic to B12 your body is going to remain sick no matter how much of that you inject in yourself. Doctors are not going to tell you that our bodies are so intoxicated that they get confused: we are now developing allergies and intolerances to essential nutrients. But this is for real.So- if you try NAET- you can find out if you are allergic to B12 and fix it in one session. Some people need more than one session but one session should be enough.
    Eatafruit78 960 Replies Flag this Response
  • Dear-Read the book "Never Be Sick Again"- by Raymond Francis- it is an eye opener.If you can afford it- try BIOSET or NAET. naet.com. At least read about it.Try to get a Bioset or NAET doctor that can give you a discount or a payment plan or something. Testing for celiac is not necessary at this point- isn't that painful, risky and expensive?. NAET and Bioset can test you for all allergies and reverse the allergy! Yes- it can cure you too.There are message boards out there where NAET on babies and childrens is discussed all the time.The real celiac is supposed to be a genetic disease- I don't know how everyone now has it. Conventional Medicine is not necessary more reliable that its new counterpart NAET.I had so many intolerances- and I was really overweight- after reading Never Be sick Again and starting NAET I lost all the weight.I went from a size 12p to a healthy 2p - with a B cup.I wish the best!Sincerely,Fruity.Yes Fruity--being tested for celiac disease after being gluten free for some time is painful. I would have to eat gluten and a lot of it for at least 3 months, which would make me ill everyday of that 3 months and no, I do not need to be tested to know what I have. Celiac disease is hereditary and the gene is in my family, my sister is a diagnosed celiac and we do have the same parents! Everyone does not have celiac disease, yet many are either sensitive or intolerant of gluten--it's a fact, not a trend! Intolerance's and allergies are 2 completely different things. I am intolerant of many things and allergic to others. They say you can grow out of an allergy or develop one at any time--intolerance's do not go away. I'm sorry, but throwing away good money on a company that promises me something they can't give is not my idea of doing the smart thing. Thank you,
    darlindeb25 122 Replies Flag this Response
  • Yes Fruity--being tested for celiac disease after being gluten free for some time is painful. I would have to eat gluten and a lot of it for at least 3 months, which would make me ill everyday of that 3 months and no, I do not need to be tested to know what I have. Celiac disease is hereditary and the gene is in my family, my sister is a diagnosed celiac and we do have the same parents! Everyone does not have celiac disease, yet many are either sensitive or intolerant of gluten--it's a fact, not a trend! Intolerance's and allergies are 2 completely different things. I am intolerant of many things and allergic to others. They say you can grow out of an allergy or develop one at any time--intolerance's do not go away. I'm sorry, but throwing away good money on a company that promises me something they can't give is not my idea of doing the smart thing. Thank you,Wow- How do you know that? Did you try it already? Did someone in your family tried and it yielded no benefit?Intolerances and allergies are words and definitions produced by a science, a man-made science which often gets to be pretty arbitrary just like languages and taxonomy.What is it that you get out of your disease? Not in the opportunistic sense but you don't seem to be willing to risk the dark to get the light.By the way- it is not a company- it is a treatment. No drugs, no invasive tests, no wait. You could at least make some phonecalls - if you mind making your life a bit easier.
    Eatafruit78 960 Replies Flag this Response
  • Yes Fruity--being tested for celiac disease after being gluten free for some time is painful. I would have to eat gluten and a lot of it for at least 3 months, which would make me ill everyday of that 3 months and no, I do not need to be tested to know what I have. Celiac disease is hereditary and the gene is in my family, my sister is a diagnosed celiac and we do have the same parents! Everyone does not have celiac disease, yet many are either sensitive or intolerant of gluten--it's a fact, not a trend! Intolerance's and allergies are 2 completely different things. I am intolerant of many things and allergic to others. They say you can grow out of an allergy or develop one at any time--intolerance's do not go away. I'm sorry, but throwing away good money on a company that promises me something they can't give is not my idea of doing the smart thing. Thank you,"I guess I must throw in my two cents worth on NAET.I did go through the series of NAET treatments and found myself felling better , I traveled over 1 1/2 hours to get to a tester.Then after a time lapse I found a Bio-Set naturpath closer and this is done by computer and a bit more reliable. I've been told for years I have fibromyglia, arthitris, from there it went down hill to MS to Lou Gerhigs disease. At this point I was told expect about 3 to 5 years of life. At this point I tried every kind of therapy I could think of.I first had tons of testing completed, from there I went on thryoid meds , put on this by an allergy Doctor who does conventional and non-conventional treatments. My thyroid tested at 3.5 which is supposed to be the norm, and it might be for some.But this doctor had me take my pulse and temp every morning before getting out of bed for one month. MY pulse would be in the high 50's or the low 60's and my temp was always around 89 - 93. once on the thyroid med I started to have energy . I then began the next step to reduce all other things that seemed to burden my system through BIo-Set. I can honestly say it's been 31/2 years and my pain is 80% gone and I can enjoy my life. No it has not helped with my gluten allergy but I feel most people with celiac also have other allergies. I do not know of one person who only has celiac's. In treating other alergies one feels better even though they still have the gluten allergy.I for one swear by Bio-set .... It gave me a life back.......thanks for reading.Also I think one must find a really qualified doc in this because that is why folks think it's a scam......"http://www.glutenfreeforum.com/lofiversion/index.php/t10674.html
    Eatafruit78 960 Replies Flag this Response
  • What is it that you get out of your disease? Not in the opportunistic sense but you don't seem to be willing to risk the dark to get the light.By the way- it is not a company- it is a treatment. No drugs, no invasive tests, no wait. You could at least make some phonecalls - if you mind making your life a bit easier.Are you mamaw from the celiac forum, I just read the same identical post there. I get nothing "from" my disease, yet I am a different person from the one who went gluten free 7 yrs ago. I read that thread you posted from the celiac forum and there are many more nays, then yays! Besides the fact, that many said it did help with allergies to a certain degree, but CAN NOT CHANGE A GLUTEN INTOLERANCE. Along with the fact--the opinion you posted here is full of holes. The person has thyroid disease and once she/he was put on thyroid meds, that is when she/he got better, not from some "promise to rid you of your allergies!" I lived in the dark for a very long time and I found my own light. Thank you for your opinion, yet it is just that, "your opinion" and I do not have to agree with you. Whatever works for you is great and whatever I do for me will be the right thing for me. If this company you love so much was such a miracle happening, it would be very well known.
    darlindeb25 122 Replies Flag this Response
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