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Freddd

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Hi, Freddd.

I don't know much about the insurance business, and don't understand all the terminology used there, but you clearly do, and maybe you are in a position to get something going in terms of a program in which the insurance companies would pay for certain targeted nutritional supplements that have been shown to actually cure or at least considerably help some conditions, such as ME/CFS or the larger range of B12 deficiency problems that you have been addressing.

It would seem to me that it would be in the interest of insurance companies to encourage treatment with nutritional supplements, if they can be shown to actually be effective and can actually lead toward cure, rather than continuing to pay out for patented (and therefore high-priced) pharmaceutical treatments that only help somewhat with symptoms, but leave the people ill chronically. I've wondered why they don't seem to do more of this. Is it because they don't want to open the floodgates of having to fund all sorts of supplements that may not lead to cures, or because there is not enough evidence that these things work, or because their clientele can shift each year, so that their incentive is just to try to minimize costs for the current year and not try to give their clients long-term help, or because the dominant stockholders of the insurance companies are also major stockholders of pharmaceutical companies, or what?
I'm guessing that you would have an informed opinion about this.

Best regards,

Rich
Hi Rich,

I've spent most all my working life involved with one part or another of the insurance business. Before 1985 some of the software I was doing was not insurance related. However, that was letting the nose of the camel into the tent and pretty soon the insurance and consulting was taking 100% of my time as various opportunities came my way. It got to the point I had to turn down a number of projects I would have liked to do because of ill health and competing projects.


Here is the situation with insurance companies. Some try to be all things to all people and basically crank out claims payments. They pay according to the standards of care, nothing in the least "experimental", which these days is also generally super-expensive. Some companies develop in-house expertise in certain areas, or contract for it, and develop specialized claims logic that goes outside the standards of care "proven" definitions.

The problems with insurance companies is that there is rarely that layer of oversight such as the consulting group I worked with represented. The super-consultant group was put together from a number of different consulting firms over the full range of skills needed, to oversee a large group of troubled plans under Dept of Justice supervision as they didn't have the in-house expertise to do it. Because there were court orders etc we were given much freer rein than is normally available. We rewrote the DOJ reporting requirements so that we could actually do what we were hired to do. We brought them up to speed technologically, specifying "mutually agreed digital data media" for data instead of a stack of printouts 10 feet tall. Basically they had to hand over 100% of their data digitally for the group without any selection process and allow us to do our own analysis.for the group without any selection process, instead of an insurance company screened 10% and then statistically define the range of probable correctness. The very first thing we discovered was how all data errors always resulted in the insurer being paid since the data record was usually so incorrect that a claim couldn't actually be paid but the value was included in their aggregate value that they collected from the sponsors of the plan.

In a lot of cases, the insurance companies only make extra money off the first year something is reduced as then the rates are calculated taking experience into account. They are often held by contract or state regulations to certain maximum management cost and/or profit margin. They want their percentage of every dollar passing through their hands, like the casinos. However, small business is much worse off because they have zero clout. The union benefits for their members was usually much better than that of management because the trustees of a sizable union have a lot of clout in negotiating costs and benefits. Many innovations in medical benefit plans come right out of the union plans. If one is negotiating on behalf of 100,000 person group, if you want a benefit and say "include it in your bid" they get it. Any number of insurers would receive an RFP (Request for proposal) and so we usually had at least 3 bidders for any given group plan.

So the companies themselves don't want revenue to go down even with merely the same benefit. Just like the "standard of care" inspired and protected non-working treatments and many docs are not about people "getting better", neither are the insurance companies. That was supposed to be what HMOs were about in the non-profit days before they were killed off. There was an "x-prize" type of thing started a couple of years ago to produce entirely different forms of delivering health care and prevention, basically modernized HMOs all over again, was supposed to be part of the program for saving costs. It got canceled before the competition started because of the limits on innovation and uncertainty of requirements with the federal health care law.

We, the group of consultants, used to do about half a dozen conferences per year. We we would be attendees, exhibitor and often presenter at each of these. They were very hectic and as I became more disabled I started cutting back on my attendance. The booths did all sorts of things from various blood tests and other types of tests to short studies using the conference participants as subjects to demonstrate anything from their screening system to their software systems. This was in the day of traveling with full desktop systems and 19" CRT monitors.

I attended one of the CFS/FMS conferences held in SLC a few years ago and many of the exhibitors were handing out things, or running studies either there or recruiting participants. All of them were interested in those who were ill and didn't have any interest in somebody who was recovered, especially not with their protocols. I had recently recovered the ability to stand on one foot and showed many researchers there just that.

As an exhibitor at a CFS/FMS conference we could do a study using a screening questionnaire and consent form immediately followed by challange dose of both active b12s and for comparison hydroxycbl and then some hours later a followup questionnaire as to what effects were noted in several hours. Fully healthy people who claim no symptoms would have to be included too. These could be done on netbooks or peoples own computers loading a page so the results could be posted on a large screen immediately as they happen. After the questionnaire the participant could be handed a printout of their CNS and body symptoms and what the various symptoms respond to. A presentation of the results of this could be one of the last presentations before the closing session. Including the docs and researchers as part of the population would help spread the word as those over 50 who have no "non-specific" symptoms and zero response to mb12/adb12 are really quite rare.


or because there is not enough evidence that these things work,

That is the least of our problems. That is institutional review committee thinking. Insurance. Evidence based medicine is a "new" idea.


or because their clientele can shift each year,

That was one of the benefits of working with union groups. Even though the employer might change and the insurer itself might change, the plan remained the same.

so that their incentive is just to try to minimize costs for the current year

That is the only year they make money on savings. Some followup pay for previous savings could change the equation. The trick is to build financial incentives into the compensation program for docs and insurer. So a nutritional evaluation with symptoms questionnaire and scripted conversation with decision tree could be made a no copay benefit with a little better than average compensation to the provider and they will flock to it.

and not try to give their clients long-term help, or because the dominant stockholders of the insurance companies are also major stockholders of pharmaceutical companies,

Mostly these are all widely held public companies and there are massive amounts of cross ownership. The stockholders want to see maximum profits next quarter and next year.

One of the effects of getting this started would be having within a few years enough accumulated test results to re-norm many of the tests on people who are asymptomatic having enough active b12s and folates rather than a population that has chronic deficiency symptoms as "normal". This has distorted everything.

Just consider, if folic acid, cyanocbl and hydroxycbl are only partially effective, as I maintain, and a multitude of symptoms, especially CNS symptoms, can continue to worsen while having "normal" or even high levels for cobalamin and folate and having methylation block and methyl-trap problems are common and even "normal", such as macrocytosis between 92 and 100 has become completely normal with many other effects on blood cells, a lot of test results are going to look different. Treating this universe of 300+ symptoms (much overlap and redundancy and progression) according to current test results is a sad laugh. It doesn't work. The tests used don't predict response or lack there of to active b12s and folates. Using these tests it is actually not possible to "rule out" b12 deficiency for MS or anything else.

The finding that all these many neurological diseases also have low CSF levels of cobalamin in common is a beginning but if tested then against "standards of practice" folic acid and inactive cobalamins and doesn't make a difference they come to the totally fallacious conclusion that "B12" doesn't work for these things when they never actually tried real b12s in in quantities that penetrate the CNS. This is how research is going terribly wrong on this whole subject. They maintain the semantic error that cyanocobalamin IS "B12" and that nobody needs more than 6mcg a day.

Because of these errors of thought, injectable mb12 is "experimental", especially in amounts above 1mg/month. This can be changed by the stroke of a pen with a large group requiring a different benefit. This would almost certainly have to be done through one or two contracting compounding pharmacies so that a a quality product could be delivered.

If some pharmaceutical company learned how to make a stabilized injectable mb12 and to identify and deliver the most neurologically active mb12 possible that could be patented just as Metafolin was patented and make them scads of money on the way.
 
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Hi Rich,


But I think we have to try to work with physicians, for a lot of reasons. One is that every person is unique, and they don't all respond to treatments in the same way. People really need a knowledgeable physician monitoring them so that if serious adverse effects arise, they can be recognized and properly dealt with.

I've talked to a number of physicians who have called me to find out whatever I can tell them over the years, but distressingly few. When my internist asked me a simple way to tell which symptoms might be indicating early onset of b12 deficiency symptoms what I told him "If a person has a number of those 'non-specific' symptoms apparently unrelated across multiple body systems that are normally ignored, those are generally what you are looking for". He appeared surprised by that.

A study a few years ago linked "growing pains" in children to later development of FMS. A child might have 10 or 20 other symptoms that also point to future FMS if they were recognized. A recent study I mentioned recently relates the development of Parkinson's disease to elevated MMA and low cobalamin in the CSF 20 years or more before the symptoms become Parkinson's as the mitochondrial malfunction damages neurons. These earliest symptoms are typically ignored for 20 years or more until the person has developed a serious condition. So how long is a person supposed to continue getting worse no matter how many physicians they go to before they decide that they have to do something themselves? I'm guessing here but of the people I have interacted with, something like 99% are completely unable to find or convince a physician to treat them with any version of a methylation protocol and even fewer physicians that would come to that diagnosis and treatment themselves in the absence of high homocystein. How bad off, how close to death, does a person have to be before they take matters into their own hands? Six months longer and it may have become impossible for me do that. At the end I could only read on some days and it was getting worse. I couldn't write or print readably any more. I could barely type and 1 in 4 letters was a typo. Every system in my body was failing. The medical system, such that it is, in the USA is failing 100,000,000 people purely at the diagnostic and treatment level for the hundreds of symptoms that are not macrocytic anemia, elevated uMMA or elevated Hcy or serum cobalamin so low the person has all sorts of damage, even if unrecognized. And even if and when it is recognized it is generally treated in the most ineffective worst possible way that has any effect at all. So how many hit the medical jackpot and are diagnosed while they have just functional symptoms that haven't caused damage yet? Any at all? How many are treated effectively after damage has occurred? 10,000? 50,000? More? Less? I got tired of being the human sacrifice to the gods of diagnosis by tests that ae not predictive. I encourage people to heal themselves when the medical and insurance system and their physicians have totally failed them and are likely to continue doing so. Most of these people will NEVER receive adequate treatment if they don't do it themselves. They don't have to continue being ill for decades waiting to get struck by lightning

Where is the point at which it causes far more damage to wait another day or decade or 5 than any likely damage from unsupervised usage of vitamins and supplements. The truely severe reactions you mentioned in the paper are extremely rare. And you don't even mention the most common potentially severe occurrence, hypokalemia. How many physicians recognize the symptoms of that before it becomes dangerously severe? The blood levels don't really tell the story because symptoms can start in the low normal range.

It's a nice theory that all these people ought to be doing it under a knowledgeable physicians care. It's a theory with which I agree. Practically speaking I doubt that will happen any time within the lifetimes of anybody reading this in the USA unless there are huge unforeseeable changes.
 
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Hi, Freddd--thank you for all of the work you've done on MTHFR issues. You clearly know your stuff. I am a total newbie and there is so much info out there I'm overwhelmed. I truly need a professional in the Portland, OR area that knows how to treat methylation issues. I have found a few self-proclaimed specialists on various sites but am wondering if you know of any as I would trust your judgment.

I would prefer someone local to the PDX area but am not sure how to even post this to ask for help from others. Any help you can provide would be greatly appreciated. I have read your protocol and Rich's and Yasko's but I am very reluctant to try a "do it yourself" method at this point without more guidance regarding my speciflc 23&Me genetic results.

Caledonia has been a great resource already but again I feel the need for "face time" with a person to at least get started without causing more problems than the ones I'm trying to fix. Again, thank you for all of your outstanding efforts to try to help others heal. Any names of PDX methylation specialists you can provide (or help me post this to the right place for others to see) would be greatly appreciated. Thank you very much, Tammi