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This is 2005, I have been in full remission from CFIDS for 4 years now so why am I now describing a ZeroBasedProtocol? The long and short of it, in 1999 there was four people in our house with a CFIDS or tentative CFIDS diagnosis. The use of anticoagulation and antipathogen resulted in two going into full remission and two with very significant improvement but still with CFIDS. Why did it work for two and did not work for the other two?  Why did it work for one person with the same coagulation defect and same pathogens as one that it did not work for!!

I have been struggling to find a solution that would result in remission for the other two. In the last few weeks as a result of seeing bizarre side-effects from the Marshall Protocol that were not in any sense a herxheimer reaction, I ended up reading a lot about Vitamin D and suddenly there was several epiphanies:

  • The Marshall Protocol is ass-backwards for CFIDS. CFIDS is a TH2 illness and not a TH1 illness. The interpretation provided by the folks there are bizarrely off-based but logical to a simplistic deterministic engineering type (unfortunately, medicine and illness is not).
    • Adverse reactions are described as herxheimer reactions
    • The immune system becomes totally suppressed by self-induced vitamin D deficiencies -- the symptoms disappears but the pathogen thrive!
  • Vitamin D is probably the third key of treating  CFIDS (the other keys are antipathogen and anticoagulation)
  • ARBs may be a possible additional key - but with caution because it induces TH2, thus should be avoided if possible, and only used short term ( < 3 months).

A summary of Vitamin D and CFIDS can be read here. It takes about 3 minutes of bright sunlight to produce 50% of one day's  minimum FDA Vitamin D requirement, that is 200 IU, of course, in the cloudy Northwest ... bright sunlight rarely happens. Vitamin D appears to be the bottleneck for the immune system to deal with its infections -- when there is not a sufficient surplus of vitamin D, the immune system starts firing blanks.

The difference between the two that went into remission and those that did not, was a significant difference in the amount of exposure to sunlight. For myself, I would spend 2 hrs/day outside doing things (often sitting in a tractor seat and working levers only). The daughter that recovered was active in Search and Rescue and kept pushing herself to do the outdoor training sessions. The other two did not get anywhere need this time of exposure to sunlight -- both had light sensitivity and would get sick easily from being in bright light for any length of time, so they avoided going into the sunlight (thus reducing their Vitamin D levels and Immune response further -- a vicious cycle).

Multiple Sclerosis is an autoimmune disease (of unknown origin) in which vitamin D plays significant factor for both getting and the rate of progression. It is likely that Vitamin D also plays a major role in the incidence and control of CFIDS.

Multiple Sclerosis in the United States for white male veterans according to place of residence prior to enlistment This is a chart of US veterans who came down with MS. It shows that Veterans enlisting from Washington State had 4x the chance of getting MS as Veterans from Texas. Most people prior to enlistment lived in the same area.

From http://www.sunarc.org/msmap.htm

Studies of CFIDS have been by place of incidence -- often when people are 40+ and have moved 10 times. Such studies will not show long term impact of sunlight to incidence of CFIDS. Note: Even if you were born and lived only in Florida does not mean that you will have 0% of getting MS (or CFIDS), it simply means that your chances are very greatly reduced!!!.

 

Light Sensitivity - Alternative Explanation

Recently I have been seeing major herxheimer reaction happening from 200 IU of vitamin D/day for one of those that did not go into remission and who was sensitive to light. Suddenly it made sense why they got sick from being in the sunshine too much --- the exposure produced a large amount of vitamin D, which allows the immune system to attack the pathogens and produce a herxheimer reaction (unfortunately, massive). Interestingly, this individual is now going outside more often -- and I would predict that once 1600 IU per day is tolerated without a herxheimer reaction that the photo sensitivity will  disappear.

If you are light sensitive: Do not go and exposure yourself -- you will generate levels of Vitamin D that will cause very severe herxing. Keep avoiding strong light and work up your Vitamin D levels in a controlled manner.

This observation suggests that for severe CFIDSers -- very low levels of vitamin D supplementation may allow them to get out of the deep hole they are in. I am NOT saying that vitamin D is the sole factor; simply the most probable bottleneck for CFIDS patients. All of the bottlenecks need to be corrected, hence the need to supplement all of the likely deficiencies.

Least Intervention

Our family believes in minimal medical intervention so the proposed sequence is what we believe will allow the least amount of time on all prescribed medications. The delay of ISAC panel and anticoagulation treatment is done to reduce financial costs costs-- if you wish, you could start doing that at any time.

This is NOT Treatment by Vitamin D

Although the above is centered on Vitamin D, IMHO the most probable for most people, the basis goal of this approach is simple:

"No Deficiency Left Behind"

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