The following describes a "For What's It Worth" or "Zero-Based Protocol" representing the scenario of my coming down with CFIDS, with the knowledge and experiences that I now have and assuming a physician who knows nothing about CFIDS except that it is devastating, willing to do tests and willing to prescribe reasonable items based on test results. The following is a general outline of this approach. This is intended to treat the disease and not the host of symptoms. You will find links to more details in the right margin -->.
Alternative Names: "For What it is Worth Protocol","No Deficiency Left Behind Protocol"
Stage One: Restoring the Immunity Response
The following tests could be used as an early-CFIDS diagnosis panel (i.e. before 6 months)
The first stage assumes that you have become sufficiently deficient in some nutrient used by the immune system so that it is unable to mount an effective defense against the infection. This is not unexpected given the tendency for mal-absorption and Irritable Bowel Syndrome. The most likely deficiency is Vitamin D. It is essential to get this important moderator of the immune system up to at least the bottom of the optimal range. The deficiency table gives suggestions of the amount of supplementation suggested to return the immune system to an effective level. After 6 weeks, you should start to add non-denatured whey. This will provide a variety of amino acids and other nutrients to complement the vitamins. At 12-24 weeks, I would recommend at least a one month trial of Recuperat-ion (http://www.recuperat-ion.com/) - stopping any other mineral supplements while trying it, starting at a low dosage and working up to 4 times/day - this particular formulation appears to have some unique positive impacts.
Duration: Until your Vitamin D level reaches 108 nmol/l (43 ng/ml) and you have stopped herxing. Some people may not herx -- herx seems to be specific to certain pathogens only.
Change of Symptoms Expected
Herxing is the most likely effect. It will likely start 1 hr after taking Vitamin D/Calcium and last 2-4 hrs. You may wish to measure your temperature (an ear thermometer is suggested) every hour, some people will see a rise of temperature going with the herxing. This is totally natural because it is how the body fights most infections -- raising the body's temperature. If you have a temperature response -- you are lucky because by monitoring the temperature pattern you can keep the herxing in a reasonable comfort zone (i.e. you can see when the herx starts to decrease and not take more until you see the decline) and it can be used to determine when you have stop herxing.
Stage Two: Determine surviving pathogens
Once you have reached the optimal vitamin D level and appear to have stopped herxing, we proceed to expose the surviving pathogen by removing fibrin and other coagulation deposits which may be shielding it. We do this by introducing fibrin dissolving enzymes. The following assumes the use of bromelain (the cheapest and also one of the most effective). Bromelain is measured in GDU, the goal is to slowly increase bromelain until you get to 18000 GDU or more. At this time, you may wish to also add for 1-2 weeks, some of the following:
You may find that you may herx because pathogens are being exposed to the immune system. We want to give the body's own immune system every reasonable opportunity to eliminate infections that it can handle before we detect what is left over. The pathogens that remain may need antibiotics or antivirals to eliminate.
Stage Three: Treating Infections and Coagulation
At this point, you may be feeling wonderful or just a little better. Regardless, it is best to continue onwards treating any issues returned by the Stage Two Exit tests.
You should research each pathogen found to determine what works well, sometimes or rarely for each specific type of infection. Do no assume that a physician will have time to do this. Bring the name of the recommended antibiotic or antiviral to your MD with the literature supporting its use. There is a small number of antibiotics that will eliminate most of these infections. The best results have been reported when antibiotics are changed monthly -- this is a bit of a novel approach for many MDs, so you may wish to provide the papers of Dr. Jadin to your MD. In some cases, transfer factor may be suggested or needed. Transfer factor is a natural alternative to antibiotics and antivirals [Unfortunately, it is available for only a few pathogens and can be expensive].
Warning: You should stop the fibrin dissolving enzymes before starting anti-pathogens. These enzymes potentate anti-pathogens and can result in major herxheimer reaction. You should start all anti-pathogens at a very low level and increase slowly to keep the herxheimer reaction reasonable.
Chances are that you will have a hereditary coagulation defect (it is possible to acquire them also from exposure to pollutants). Learn as much as you can about your defect using Medline. There are many non-prescription supplements which will help certain defects (and in some cases, make other defect's symptoms worse -- for example Evening Primrose Oil is a two edged sword). You will likely be prescribed very low-dosage heparin. Heparin is like insulin, it is the substance that your body produces to dissolve coagulation. Heparin is usually extracted from cows and is not a synthetic chemical. Because your own heparin may have a missing component (defect), this new heparin will compensate for what you are deficient in and you should start feeling better -- in some cases, a major improvement may happen within a week. [Unfortunately, customized extracts for each coagulation defect is not available].
The use of heparin may cause other coagulation products to increase (often fibrinogen) because you are dissolving a back-log of coagulation products. Using Turmeric (a common kitchen spice) will help reduce the fibrinogen level. Turmeric is also an anti-inflammatory and antiviral for EBV.
Duration: Once you have stop herxing from the antipathogens, you should resume with fibrin dissolving enzymes. Again, start at a low level and slowly increase as the herx will likely returns as the enzyemes allows antipathogens to reach deeper infections.
Termination Condition: No Herxheimer reaction for one complete set of anti-pathogens cycle with 18,000 GDU of bromelain (typically 3 months with 3 antibiotics families being used).
Stage Four: Anti-inflammation
There is a chance that inflammation may be acting as a barrier protecting pathogens. At this point of time we see how much inflammation is happening. If there is inflammation, the use of Telmisartan with a statin (or Red Rice Yeast) for 4 months (without any anti-pathogens) is suggested. Telmisartan crosses the blood-brain-barrier and you may notice reduction of headaches or improve cognitive functions. You may continue with anti-coagulants. Fibrin dissolving enzymes should be stopped at the beginning and added back in slowly . Additional anti-inflammatory substances may be suggested by your MD.
At the end of this stage, we see if pathogens have survived or new ones has been exposed. If so, proceed to Stage Three again.
Stage Five: Prevention
At this point, if this model is right, you should have at least a 80% chance of being in full remission -- CFIDS is a "waste bucket" for many many different conditions and no solution will work for all.
Since it is likely that you have an inherited coagulation defect we should not use the word "cure". You should have the following performed every 1-3 years:
If they start deteriorating, you should be able to correct them before CFIDS develops.
You should become aware of factors that can encourage the pathogens -- fatigue and stress typically -- and learn to deal aggressively with them (low level stress over 12 months is far more likely to cause a reappearance of a pathogen than 1 month of high stress). You may wish to take courses on handling stress and people.
A support group has been set up at http://health.groups.yahoo.com/group/CFSProtocol/