Freddd
Senior Member
- Messages
- 5,184
- Location
- Salt Lake City
Hi Leela,
Actually, the "rare genetic disease" may not be any where near as rare as it was thought in 1978 when I started looking. However, it was rarely diagnosed. I was called names by doctors 30+ years before the adult onset was recognized. The names included "Yuppie flu", "imaginary woman's disease", "Its All In Your Head", "secret alcoholic", "conversion disorder", "hypochondria", "medical students' disease" (data geek disease), "psychosomatic disorder" At that time all known to have it died as infants except for 3 adults with such severe damage as to be institutionalized for life. Obviously at 69 I don't have that. What I do have is an adult onset form that is triggered by something (in my case it appears to be triggered by MTHFR polymorphism and the complete failure of folic acid to work in my body (20 percent of population with another 30% not quite as poorly reacting to folic acid) including most people posting here most likely. I also need l-carnitine fumarate specifically becasue I can't synthesize it as it appears. Again, of those that respond, 90% respond to LCF and 10% respond strongly to ALCAR. It was lack of l-methylfolate that caused me a lifelong borderline macrocytic anemia, MeCbl made no difference at all on that. 30mg daily of l-methylfolate has taken my MCV down to about 93. There appears to be a 4 way deadlock of MeCbl, AdoCbl, L-methylfolate and L-carnitine (fumarate 90% of population, ALCAR 10% of pop), a lack of any one of those causes a methylation/ATP (mitochondria) deadlock that has little to do with CblC disease.
The official treatment, HyCbl, folic acid and ALCAR works "poorly" in adults. OF COURSE! HyCbl works poorly for about 2/3s of population and not at all for about 1/3 in studied symptoms. Folic acid works poorly for up to 50% , little to not at all for the other 50%. ALCAR works poorly for 90% of those like me. Of course! So you take 0.66 * 0.5 * 0.1 as the composite effectiveness it comes out to 3.3% effective which would account for the combination working "poorly" on adult onset cases. Don't blame the genes for causing the problems caused by the wrong forms of these nutrients that don't work well for most people.
I had CFS, FMS, congestive heart failure, asthma, MCS and so forth of completely normal characteristics. developing over decades. I was taking a scad of medications. After the first 9 months of MeCbl and one month of AdoCbl no longer had the symptoms on which these many drugs were useful. In all I was able to discontinue Dilantin (neurological pain), 2400mg of ibuprofen daily (inflammation), Albuterol, a couple of other asthma meds I forget the names of, seasonal antihistamines, Compazine suppositories, Provigil and a few others. A few years later I needed to get off Lasix as I ho longer had the 85 pounds of excess water I had accumulated. I have never needed any of these drugs again. I no longer have the symptoms of CFS, FMS, CHF, MCS and Asthma II have not had for 13 years I do have subacute combined degeneration (from the CblC disease) but not severely Like if I hadn't taken the right nutrients.. That is what causes the neurological damages that requires institutional care. My adoptive mother had 15+ years of psychosis before her problem was recognized as B12 deficiency psychosis caused by anorexia.
With that said, I have found a way for a person to map their deficiencies and a logic to deal with the findings. There are multiple different major paths and lots of minor variations. Each person has to recognize their own patterns of induced deficiencies, the flags of healing and the differences between the two. I am still solving my refeeding syndrome. I'm still loosing to copper deficiency. What comes after copper? I don't know yet as I haven't solved how to get my copper levels back to normal. Copper started having deficiency symptoms for me when I was 7 years into healing. I started having some sucess 2 years ago and more 2 months ago. My liver has finally started to recover some from copper deficiency encouraged antibiotic damage. Most likely it is another micronutrient. Good luck in solving your problems.
