Hello all. I have been on Freddd's protocol since 2009. I started B12 cyano treatment in 2006. Cyano injection's once a week for about a year, then once a month. The switch to methylB12 etc. made all the difference to me. Doctor's didn't diagnose me. I am one who didn't have enlarged red blood cells, but still have B12 deficiency. My initial B12 level was 261...........
Subject: my story
Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with severe gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and weaker. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers.
This all slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate (stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blonde and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative.
In March of 2005 still getting worse. Doctor finally ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers, and antidepressents! Ever try amytryptalene? Put me out a couple of days. Doctor usless never heard me when I said, "I dont want anything that's going to make me feel groggier!" Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. Negative
I was losing weight. Tried to eat something from the 4 food groups to keep strength up. This was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back.
More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles, and hands had slight tremor all the time.
Walking: stumbled frequently. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area.
Balance..Would stumble upon rising. No balance in dark.
Muscle spasms: in arms and restless legs
Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. No one ever explained that one! I could not watch TV with a lot of motion, or ride in car. I got carsick because eye's could not handle all the motion. If I went anywhere far, my hubby had to drive, and I had my eye's shut. If I was at stoplight, I had to focus on a single object, and not the moving traffic. Checked and no diseases
Light headed: vertigo, just not alert, felt high everyday.
Nauseated: everyday, strong odors like bus, smoke or gasoline made it worse
Cold all the time, not chills, just freezing
Low grade fever 97.7
Bladder: frequency and incontinent also repeated UTI
Weight loss: Went from 5'6 130 lbs to 115lbs
Short term memory: terrible
Speaking: hard to get words out and make sense. I would slur words frequently.
Skin: sensative, hurt when itching self especially legs
Shock feeling: back of neck (scary) felt like cattle prod might feel. Aching pain in neck, that went up over head to eye.
Heart: palpatations always at night in bed (rapid)
Allergies: allergic to inside and outside. Grasses, mold, and house dust being the worst. Started in early 30's
Pain: in places I never felt it before. back and neck, burning, stabbing pain. Doctor says, "Your not getting any younger you know" . I say, "Its not normal, I know my body!" Pain also between shoulder blades, and hip. All started in neck. I had a huge lump of twisted muscle in right side of neck. Pain in upper abdomen at sternum. Very sensitive. It got so bad, I could not even cross my arms. Doctor diagnosed my upper endoscope as, "your stomach is raw". Gut issues were very severe.
Muscles: soreness..shoulders, neck and back
Depression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. Clenched teeth. All totally not me. Have never been prone to depression.
Excesssive yawning
detonation sounds only I could hear
Eyelid twitching
warm sensation on top of right cheek
metalic taste in mouth
I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said "I'm not better! He gave me one week. I had to go because of disability. I lasted one week, and was back in ER. They gave me some stomach concoction, and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING.
OK then. I'm home very ill, and know this doc hasn't a clue. S o I need a new course of action. I feel alone, scared, and frustrated. I have a job I can't do, a family, house to take care of, and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened, and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken, or a hot chicken wing! Same results. I researched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work.
Dr. Mary would take my chart home, and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth.
I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top, and lobster. Within a week of surgery I was way worse. I totally crashed. Found out later that Nitros Oxide depletes body of B12. Working on finding out if that was administered. Would explain alot. Could not believe it.
Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele, and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side, and sister with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentence.
I have a sweet caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS.
My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed.
In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband, and he said to call the doc. Dr. Michele ordered it, and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience.
I received cyano B12 shots for 6 months once a week before I felt anything! It took almost 2 years to heal enough, along with physcial therapy to get my body going again. I was a mess! The whole time I had MS in the back of my mind. Nothing happened for quite some time.
Its a very slow comeback. Eventually I went to shots once a month. This was never enough, as I felt it before month was up. I took cyano sublinguals inbetween shots, but that didn't help much either. Eventually symptoms lessened. Not all went away. This after 2+ years of injections and subs.
I still have stomach upset.. My eyes will never be the same. Vertigo comes back once in a while. I still lose my balance sometimes. The pain is my biggest beef. Im back to work, and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. I've been called stoic. No meds. Do not want any. Stomach can not tolerate them anyway. I'm just determined not to let this get the best of me.
If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive. I found out after the diagnosis, that my Dads Dad had pernicious anemia. Inherited? Familial. My regular Dr. now screens all patients at their physcial for B12 because of me. Then there is my Dad. He passed at 73. He was diagnosed with Alzheimer's disease. I strongly feel he had B12 deficiency too. I did not know anything about this when he was ill. I was headed in the very same direction. His symptoms appeared, and he was gone in 3 years. He had a strict health care proxy.
All above written before I switched to active forms of B12.......
In March 2009 I found this website
www.wrongdiagnosis.com "B12 deficiency commonly misdiagnosed". Did some more research, and decided to switch to the active B12 forms Methyl and Dibencozide. It was the best move I could have made. Within the next year all the lingering symptoms are pretty much gone. The worst for me being my stomach issues and pain. I walked daily last summer without any pain. I can now eat without gastritis. No vertigo, or restless legs. I finally have a pair of glasses I can see out of. (Reading is a hobby) Thankyou!!!
I just found out that my husband also 50, has a low level. His doc didnt even bat an eye at 345. I had him test B12 level, because of fatigue and low libido. I had to go too, and try to get him up to speed on the subject. My older daughter (27) had hers tested. Again, her doc didnt react. Hers was 311. Working on getting my 15 yr old from pediatrician
who wont check her to my own doc who will test her. We are all on the Methyl B12 and Adenosyl B12. Hope this helps someone else.
Update Nov. 4 2011
Thanks go out to Freddd, Kevin Millhill, Idie, and many more from old website. The site was a wonderful place to learn about this condition.
Today I can say I am pretty much healed of all above symptoms. Most recent revelation is the fact I am not allergic to anything now. I was just tested again, because of cronic sinus problems. Nettie pot is my new tool. lol I have also learned that because of what my stomach has been through I need prevacid when I take an antibiotic. If I don't take it the gastritis comes back for about 3 months. UGH! If I have vertigo now, it is sinus related, not B12 related. If I have pain, it is a joint (sacral area), and normal aging. All and all I really have nothing to complain about, and that feels great!
I am here now to help in any way I can.