Treating Chronic Fatigue Syndrome (ME/CFS): Vitamin B12 – Fred’s Story
Treating Chronic Fatigue Syndrome (ME/CFS): Vitamin B12 – Fred’s Story
My problems started in infancy. I was sick a lot. Before antibiotics I wouldn’t have survived. I had 6+ streps per year from <2 through college. I missed 25-33% of school each and every year. I had a pneumonia every few years. And once every few years I would have a total CFS type crash for 6 months or so from any number of triggers including apparent food poisoning, mono, first exposure to a specific artificial vitamin, a flu vaccination, a cold. As a child I was diagnosed with speech delay due to delayed myelination. By 8 I was diagnosed hypothyroid.
In my early 20s there incidents two years in a row at the end of summer when some mysterious disease swept the country. Schools and collges were delayed in opening. The CDC was called and they said “it’s nothing”. I got it both years and was sick for 3 or 4 months with it each time. My sister got it and it took 6 months for her to recover.
At 24 I was t-boned by a guy running a red light and had 3 fractured vertebras (t10-12) and 2 compressed disks and damaged dorsal horns, cervical damage, lumbar damage, etc. By 25 I had all the symptoms of ME except that it wasn’t recognized then. By the time I was 30 I was starting to get kicked out of doctors’ practices for insisting that there was “really something wrong” and that it wasn’t “all in my head.
I had multiple chemical sensitivities all my life until 5 years ago. I had ME (if it had been a diagnosis) since my teens until 5 years ago. I had FMS since I was 30 or so until 5 years ago. I had CFS from 39 until 5 years ago.
I was a consultant and systems analyst and software designer from 1982 until I could no longer work in 2002. I worked in the healthcare field and was part of the establishment. I feel betrayed by them. I designed and wrote HMO software, I was part of a team auditing insurance and HMO contractors for the trustees of various group plans and I consulted. When I presented at conferences, I was respected and listened to. When I was in the exam room 1 on 1, I was told “It’s All In Your Head” (IAIYH) and turned into Rodney Dangerfield who got no respect. My brains didn’t disappear because I was speaking to 1 doc instead of 300.
My whole family was involved; one sister an MD, one a hospital adminstration consultant, my father ran an HMO and was a consultant after being a dentist for decades. My MD sister never would believe there was anything wrong with me either or that the morphine I’m on daily for pain could ever be justified. The morphine actually allowed me to focus on the underlying problem instead of be constantly struggling with overwhelming pain.
My talent is for picking patterns out of data. I had to work for myself since the fatigue and other problems made me unhireable. I then took on my own problems as a project, starting on the path to healing and recovery in 2003. I found what works as well as what doesn’t work and why in some cases. It appears to work well for many others who have tried it. It angers many as it goes counter to some favorite belief systems, but it does work for many. I believe that I am still missing at least one significant factor in a matrix of factors.
In early winter 1987, when I was 39, something was going around Salt Lake City. My doc’s office was flooded with people, all with the same symptoms. My wife had it too. She recovered in 3 to 6 months. I didn’t. I woke up one day vomitting and so dizzy and weak I couldn’t stand and had to crawl to the bathroom. I had no energy at all. My muscles hurt terribly in all sorts of ways. My doc’s best guess was a “miscellaneous entero virus”, and with followup reading my best guess became Coxsackie or Echo virus. These can follow the nerve paths and had symptoms like mine.
My neck was so terribly sore I couldn’t lift my head off the bed without a cervical collar. For 6 months I didn’t go out of the house except to the doctors. During this period my symptoms expanded, on a specific list, from 85 to 175 symptoms where they remained with a few more added over time, for 16 years. As it included severe brain fog and poor memory I don’t remember a lot of things from that period.
In my 40s I was told by a doctor on the way out his door “You have too many symptoms to be believable”. In 2000 I was told by a female neurologist that “I could diagnose you with FMS but that would cause you problems being a man with an imaginary woman’s disease and it would cause doctors to treat you badly”. Well, I had already received that diagnosis and CFS half a dozen times by then and was routinely being treated badly.
I had severe untreated chronic pain problems too from the accident exacerbated by the FMS. By 2000 the correctness of the damaged dorsal horns was beyond doubt as I had lost about half the muscles in my back on the left side and it was very visible. Several docs, the honest ones, in kicking me out of their practices said “I’m sorry I can’t help you. I know that there is something very wrong, that it’s not all in your head, and that I can’t help you. I’m all out of ideas. When you find out how and why you are different from my other patients in that you don’t get well, you will have the answer to your problems.” The less honest ones found a reason to “blame the patient”.
I’m like Rip Van Winkle. I couldn’t see well enough to read anymore and the end of the road was coming up on me quickly. After a 16 year chunk carved out of the middle of my life I woke up when the fog cleared on May 21st, 2003 at 6:05pm when despite odds of about a 1000:1 against me I lucked into buying the right brand of the right type of the right vitamin taken the right way which was right next to an absolutely worst choice on the shelf which I almost bought instead. I was at the checkout counter when that little voice said “Put that one back and get the other one”. I got home, put one in my mouth under my tongue and 5 minutes later the lights came on and I started coming out of hell. If I had bought that first one I picked up I wouldn’t be here to tell this story.
My 33 year marriage which had survived decades of illness didn’t survive recovery. As my neurology healed and all the neuropsychiatric things started healing I didn’t go back to what I had been before the damage. I’m quite a different person now. After the divorce and a period of intense healing producing visible differences each 3 weeks my exwife didn’t see me for 4+ months. When she did she looked right past me and asked the person with me where I was.
Going back to a club where people had known me, nobody recognized me. I looked different, my interests, moods and personality were different, my body carriage was different. My exwife married a nice guy “like you used to be”. At the time of the divorce she was telling people, “He’s not really like this, he’s pretending”. Only I wasn’t. I wasn’t worse nor particularly better, just different. Don’t confuse me with the guy who used to live in this body with the same name.
Life has gone on. I’ve gotten reaquainted with my children, sisters, father and various family members. A couple of friends have carried over. I still think like a systems analyst. My internist is amazed as he has never seen anybody come back and recover from that far over the edge. I used to be a pretty good tournament bridge player but haven’t played in 15 years now.
I’m 61 years old and basically starting over. I am currently healthier than at any previous time of my life and am essentially fully recovered from virtually all of the ME/FMS/CFS symptoms that plagued my entire life. The symptoms that still remain are largely damage from a car wreck in 1972 and not yet completely healed neurological damage from a neurological degenerative condition that puzzled all my docs for decades.
Recovery is possible including a very large amount of neurological and neuropsychiatric healing and recovery. I had a whole lot more than just CFS/FMS/ME going on. That was what they were able to diagnose. The rest was a mystery to approximately 100 practitioners and specialists of many varieties.
I will answer questions and share how to get results with anyone interested. If this were an HMO or other group buying my consulting services I would offer by services with a performance guarantee as I am that sure that what I found works, for a group though not necessarily for every individual. There are still some missing answers, some variable(s) not identified.
I have some hypotheses and theories about why things work the way they do which may or may not be correct. However, theories don’t have to be correct to get results. I am interested in discussing and refining these.
The docs decided that the FMS was “just” a result of FMS starting with a physcial trauma whereas the CFS started with the entero virus and was a post-viral situation. These b12 deficincy crisis situations almost always start with a trigger of an illness or injury or other stressor that appears to cause a barely funtioning system to crash, and once crashed, never enough active b12 to become normal again.
I had enough symptoms to divide up amongst a handfull or 2 of specialists, which they were, and not one of them made a diagnosis that was predictive of effective treatment. I was told Its All In Your Head a dozen ways and called a liar over and over and treated badly by physicians for decades. I received many wrong diagnoses and mistreatment based on them. The one thing that all of this has made very clear to me, and I’ve worked in a group health environment for 30 years, is that we now have an invisble deficiency disaease that afflicts millions of people unrecognized.
What diagnosis you get doesn’t matter in this. The symptoms do. The problem in our current insurance system, and in fact how medical records are kept, is that diagnoses are all important and there isn’t any place to even keep track of symptoms generally. Wrong diagnoses become enshrined for eternity. What is really wrong is lost if your doctor doesn’t write it down. What your doc writes down is heavily edited down to what is thought important and in that, most clues, are lost.
Insurance pays for allowable treatments for those diagnosis codes. It won’t generally cover even the injectable portion of the active b12 protcol because it isn’t the acceptable Pernicious Anemai oriented periodic injections. Thirty mgs/day of mb12 compared to 12 mgs/year of cyano or hydroxyb12 is considered ridiculous and unjustifiable, even if it works and gets a person out of a wheelchair. However, that’s a different battle. 95% of the healing can be done with sublinguals at vitamin prices. Don’t let your fears and semantics keep you from healing. First get well, then discuss the nuances.
This protocol is controversial. I’m not terribly enamored of any specific theory. It’s a pragmaticlly determined program in the first place that needs each person to find which variations work best for themselves. There is no one size fits all. It’s much more of a custom suit within guidelines. My internist at the same time as being amazed says that it is too complicated for most people to be willing to do. I wish you all the success at it that I have had. 95% of the healing can be done with sublinguals at vitamin prices. Don’t let your fears and semantics keep you from healing. First get well, then discuss the nuances.
The one thing that all of this has made very clear to me, and I’ve worked in a group health environment for 30 years, is that we now have an invisble deficiency disaease that afflicts millions of people unrecognized. What diagnosis you get doesn’t matter in this. The symptoms do. The problem in our current insurance system, and in fact how medical records are kept, is that diagnoses are all important and there isn’t any place to even keep track of symptoms generally. Wrong diagnoses become enshrined for eternity. What is really wrong is lost if your doctor doesn’t write it down. What your doc writes down is heavily edited down to what is thought important and in that, most clues, are lost.2 comments