I think if terms like "paradoxical folate deficiency" and "induced folate deficiency" are going to be used to help diagnose and treat people, then properly designed placebo controlled studies and testing needs to be included to back them, rather than just anecdotal evidence from a small set of samples. Otherwise I think the term "potential" should be put before the conditions. There are way to many variables in individual's biochemistry and cross over of symptoms to be saying that if someone takes NAC and feels worse then they are definitely experiencing folate deficiency. Maybe you have that data from testing, and maybe that is always the case, I don't know.
And while super sensitive people with poor gut function are taking supplements with additives like fruit flavours, mannitol and xylitol etc. then you never really know what is causing what for sure without lab results. I'm also a little bit concerned that you might think that ME/CFS is DEFINITELY a subset of plain b12 deficiency illness. It may be, but until it's proven I think it's a dangerous assumption. It's the same as Andy Cutler thinking that all ME/CFS is caused by mercury poisoning. You can't both be right! :- )
Hi Adster,
There are way to many variables in individual's biochemistry and cross over of symptoms to be saying that if someone takes NAC and feels worse then they are definitely experiencing folate deficiency
Ten of us over at WD did an intentional trial. It wasn't just "feels worse". It was a specific set of symptoms that reversed starting within hours after stopping NAC, glutathione (precursors) or un denatured whey and taking an 8mg dose of Metafolin and 10mg each of adb12 and mb12 and continued until symptoms were gone again. All 10 had been on the active protocol with excellent results including up from a wheelchair. All had sudden return of symptoms and suddenly worsening instead of continuing to improve when starting the trial. If you go looking for Glutathione Detox and NAC detox you will find the essentially same descriptions for those two and for folate deficiency and then there is what Metafolin got rid of that also coincides.
And while super sensitive people with poor gut function are taking supplements with additives like fruit flavours, mannitol and xylitol etc. then you never really know what is causing what for sure without lab results.
Perhaps just an interesting coincidence but the whole "super sensitive" situation is precisely one of those things caused by methylfolate and/or methylb12 deficiencies.
I'm also a little bit concerned that you might think that ME/CFS is DEFINITELY a subset of plain b12 deficiency illness.
Now this "plain b12 deficiency illness" is one of the most frequent reactions against the whole idea and is a myth. However, I have absolutely no belief in a "plain b12 deficiency illness". There are 2 kinds of active b12, mb12 and adb12 and there are separately discernable complexes of symptoms for the body and the CNS for each making a total of 4 discreet b12 deficiency illnesses affecting over 600 differnt biological functions in the body and nervous sytem. There isn't anything in the entire body that isn't dependent uopn sufficient b12 of the correct variety. Every single system, without exception, of the body is dependent upon it.
It's the same as Andy Cutler thinking that all ME/CFS is caused by mercury poisoning. You can't both be right!
Actually Adster, Cutler and I might both be right. Let me explain how. Consider it this way. The model of the whole thing as I see it is basically this. For this also consider that 80% of mercury toxicity symptoms are IDENTICAL with b12/folate deficiency symptoms. It might be very difficult to tell them apart. This may be because mercury quite possibly destroys methylb12. 1 mg of mercury can destroy 7mg of methylb12. The typical total body load of b12 is estimated at 2.5-5mg. A person can have many mg of mercury in their body. A load of 30mg is not unusual. That possibly can destroy 210mg of methylb12. That would destroy all the methylb12 obtainable in the body and that will be eaten in food for the next 70 years. Now that would be a cause of b12 deficiency that keeps on taking making climbing back up out of the pit impossible on an ordinary food intake.
1 - Some percentage of people have some inborn errors within themselves that affects how they handle b12 and/or folate. This affects their immune systems and the ability of the body to remove toxins and heal fully so damage accumulates over time. This also puts their body on the knife edge of just making it by or in some cases the toxins or other stressors just plain overwhelm the system.
2- When the person is sufficiently weakened, something happens, there is a stressor. The stressors that I have seen in person, in others, in the literature, etc include vaccination, viral illnesses, bacteria illnesses, traumatic injury, toxic challange, surgery, etc. There have been endless triggers suggested because some people have had them. I've had several of them. My daughter had several a different times in her life. She got a cold at age 2 the day she said her first complete sentence, stopped talking for several years, started stimming and repeating one syllable; baaa - baaaaaa - baaa- baaaa etc. She emerged over several years after age 5. Then illness and setback, then auto crash and setback with FMS following. My history is similar in many ways. In any case the stressor tips the balance of b12 down the slope to a lower meta stable placement that can't normally be returned to the higher meta-stable position without intervention. Certain systems don't recover.
3 - The person ends up, as a result of exhausting the body load of b12 to a low point, and with possible genetic processing problems, is stuck. Even if the toxins are cleared out, or the virus is defeated or whatever, they are in a hole and can't get out. What starts out as an illness, an injury, a toxic reaction becoms something else chronic. The symptoms change from the acute onset symptoms to a somewhat larger set of slowly worsening and broadening symptoms completely independently of whatever the specific trigger(s) were.
4 - The EXACT subsets of symptoms a person has from a universe of about 400, is determined by the mix of 5 basic inter-related deficiencies, four b12 and methylfolate, and another half a dozen secondary deficiencies, another dozen or more tertiary deficiencies plus whatever toxins remain in the body. This is a complex mixture of hundreds of possible different subsets that do exist, many named. The symptoms are "non-specific" precisely becasue they are included amongst so many different things of the same root or secondary causes.
I think if terms like "paradoxical folate deficiency" and "induced folate deficiency" are going to be used to help diagnose and treat people, then properly designed placebo controlled studies and testing needs to be included to back them
I agree. These studies need to be done. And they probably will be, maybe in time to save the lives and health of my great grandchildren. My only granddaughter is going on 2 years old. Now if you have the tens to hundreds of millions needed to run those studies I'm sure we could put together a research team to do the research projects. I have mapped out the ones that need to be done, approximately 10 intial studies and another 20 to validate and confirm those first 10. We could have the first set of 10 up and running in about 2 years if the money were forthcoming. Since these studies will cost the pharmaceutical companies profits they will not fund or do these studies. Such is the problem of vitamins. The medical and pharmaceutical industry don't like them one little bit. There is no real money to be made on them and no "control". Have you heard any appolgies from the medical business for the heart attack plague caused by their promotion of sticks of transfats being substitued for butter in the 50s? Or the people they bled to death in other centuries. Or all the brains and lives ruined by psychosurgery. Or all the wrong things destroying peoples lives and health they have done in the name of medicine. These diseases are man made just like pellagra and beriberi. The research establishment would rather bury it forever than see revealed how badly they screwed up.
In the identification stage of course all these things are "potential". However, as the reations to methylfolate and methylb12 and adb12 can be rather prompt often making night and day differences easily visible to the naked eye it ceases being "potential", often within hours as the deficiency is reversed.
So let's take "paradoxical folate deficiency". It doesn't exist in anything indexed in google scholar. It has only been possible to do a comparison between the effects of folic acid and methylfolate for a few years and nobody has studied it. In the Cerefolin/NAC package insert research they didn't recognize it when some people had severe side effects in the studies leading to approval of the drug. However, a simple comparison with Deplin (side effects are essentially the same as placebo) shows they saw the side effects but didn't recognize them. The side effects that they list just happen to match "NAC-detox", "gltathione detox" and of course good old fashioned folate deficiency. Nobody doing that research dared suggest that NAC with Metafolin could possibly cause a severe folate deficiency. So here we are right out on the bleeding edge. If anything is done soon enough to be useful to any of us alive right now it isn't going to be by the research establishment. The 10 studies to get to the point of what I can demonstrate right now, would take place about 1 every 5 to 10 years slowly building a case on all the little pieces from the light sensitivity of methylb12, breakdown and acne to the absorbtion rate of sublinguals and how it relates to injections to establishing the threshold for the cobalamin resistant CNS problems that are present in CFS and FMS and how many injections per day of what size actually work. Coming up with those answers blind could take 50 - 100 years. Further I have already talked to researchers. They said that the real study that needs to be done is absolutely impossible to get through an institutional review committee because there are so many different substances involved. It's too complex and has too many variables and has the potential to completely re-write nutritional understanding which right now is built on flawed foudations. They like single substance or at most simple combinations of no more than 3 substances. Historically it has taken 70 or more years to reach an understanding of a vitamin once it becomes available. So for mb12/adb12 that date is approximately 1998. For Metafolin that date is approximately 2006. So that takes us out to the neighborhood 2075 for recognizing what the deficiency syndrome of mb12, adb12 and methylfolate each looks like. Since these are the most complex deficiency syndromes 70 years might be quite an underestimation.
I waited 54 years for medical research to figure out my problems. It didn't. I identified methylb12 and adb12 and possibly folate as my probable deficiencies in 1979 doing old fashioned paper journal library research. It was not a testable hypothesis at that time as the substances were not available except in France to researchers with a 10mg vial costing about $1000. Methylfolate was unavaiable period. Nine years and 3 months ago I was dying and couldn't wait any longer and did it myself. I have worked in group medical at various levels of software development, plan design and consulting since 1981. I know the flaws of the system all too well. I have saved my life and restored my health and done the same for my children and thousands of others over the past 8 years. I didn't approach it from the research industry method as I did not have time for that. Instead I approached it as a systems analyst and engineer with speed being of the essence as I was trying to save my life. I have a working system here that is meant to be used in a 3 step process. I expect to have a finished prototype of the new lifetime questionaire very soon now.
Three step process -
1 - Detailed lifetime symptoms questionaire - certain patterns of symptoms map to certain nutrients and body vs cns. With this we can see the adb12,mb12, metafolin and a few other things unmet needs in the body and/or the CNS. The patterns indicate which things would probably be needed and wheter we are talking about body only doses or body and resistant CNS doses. In a questionair development project I questioned people in details about their symptoms and they took 1mg mb12 or 3 mg adb12 or both as challange doses, n = 1000 aproximately over 3 years. Most of the people sampled were at any of several campgrounds or group medical conferences or traveling to said conferences so most of them were not disabled
3 Modes of answers/responses a - about 50% had multiple symptoms from the present list b. - About 30% had essentially no symptoms or a few symtoms on or off the list c. About 10% had lots of symptoms but not from the CFS/FMS/B12/Metafolin universe d. about 10% reported no symptoms but then after have a significant response with multiple symptoms affected changed their story to "Oh yes, I forgot about those. The doctor said that they were non specific and didn't matter. I had forgotten about them."
2 - A single dose challange of adb12 and/or mb12. Evaluate for 10 minute, 1, 2, 24 hour resposes. There is also an expanded version of the challange that includes Metafolin, b-complex, magnesium and l-carnitine fumarate. These raised the response rate to 95%from 85% for those with symptoms, intially or remembered after response. Those without sympoms on the list had a zero response rate.
3 - Active b12/folate protocol for those have the symptoms and response with adjustments, titrations and fine tuning