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Date: 2004-10-26   Web Site: http://www.geocities.com/seattlecfs/

Group discussion group: http://health.groups.yahoo.com/group/SeattleCFS/

What the majority of CFIDS cases is to me, boils down to the following two statements. CFIDS is an **interaction** between

  • some agent (infection, environment) triggering abnormal (high) level of coagulation occurring in the body
  • some agent (genetic, environmental) that blocks some part of the coagulation being cleaned up.

The complexities come in because there are many possible agents, fortunately a few very probable ones.

The result of this interaction is insufficient oxygen delivery to the body and/or mind. It is my opinion that CFIDS is where it is dominantly the mind that suffers -- the mind gets exhausted trying to manage the body messages and controlling its movements -- hence the person is exhausted (because the mind is exhausted!). FMS is where it is the body that suffers most -- not enough oxygen delivery to the bodies "bottlenecks" - aka the FMS pain points -- hence the cells starving for oxygen are screaming out in pain.


With this model, it means that you want to identify the agent and correct it (if possible), or at least modify it. Different agents need different treatment -- in some cases, a drug effective against one agent encourages another one. The classic example is penicillin: It eliminates many Chlamydia but is literally fertilizer for Mycoplasma!

-Ken

Questions and Answers

My child is flat on her back and miserable, where should I do?
For my own child, I would try to establish creditability of the treatment approach by doing anticoagulants. The following are all non-prescription items that fit the profile for a child -- extremely low risk (effectively none) which may result in significant symptom relief. I have ordered them in the sequence that I would suggest doing them.
  1. Piracetam
  2. Alpha-lipoic acid
  3. Niacin [flushing] (starting at 50mg and increasing slowly to 500 mg or until a flush occurs)
  4. Grape Seed Extract
  5. Tumeric Capsules

If the above has no effect, I would try 1 child aspirin with each meal -- not to exceed the duration or dosages listed on the bottle. If they do have an effect, then you may be able to get the child's buy-in for elimination of cause treatment where there is often a bad herx reaction.

You said "sequence" above -- please explain
My view is that you should never add (or remove) more than one item every 2 weeks. You need to keep records of everything you can during this period and compare it to the prior 2 weeks. Some of the things that I noticed changed for myself were:
  • The number of times that I urinated
  • Hours of sleep
  • Number of short comfortable walks that I could handle each day (the distance may be just 300').
  • How long that I read the newspaper before becoming tired and distracted
  • How long that I played solitaire or other mindless-games on my PC
It may seem slow, but it is effective in avoiding tossing out the baby with the bath water.
I'm doing antibiotics for sinus infections -- I feel better on them, but the infections keep coming back!
Coagulation products (deposits) end up creating fortifications that the infections can retreat to. You've eliminate all of the infection running around in the blood system -- but leave those deep in the tissues. They then re-infect your body. The apparent solution is to use "potentators" which are actually enzymes that dissolve these fortifications. There is more than one type of coagulation deposit so more than one enzyme may be needed. The set that we have used (and found effective) are: Be very careful in starting these because they have been documented to increase the effective dosage by up to 10x (i.e. 10x as much antibiotics get into tissue!). So start low and slow, and expect a herx reaction.
Where do you get tested for infections? How do you do it?
Dynacare does the blood draws (one time it took 4 locations for draws to get enough blood out of me -- 15 vials for everything!!!). For coagulation testing, we use Hemex Labs, http://www.hemex.com  because they understand the illness and its meaning (priceless in assisting a physician to know what to do with the results!). For infections, we use http://www.mdlab.com. A description of their CFIDS panel is at : http://www.mdlab.com/fees&servs/serv-cfs.html  
What are the possible infections?
I view any Hughes Syndrome infection as a candidate for CFIDS -- the logic is simple, these are infections that are known (by conventional non-CFS MDs) to turns on coagulation. If you ever had an acute case of one of these, there is a chance that it has persisted in a chronic form being kept contained and controlled by your immune system. The presence of this chronic infections keeps coagulation being triggered. To me, the Marshall Protocol is exciting because it appears to change the immune system response from control to eliminate. This may also apply to the use of Transfer Factors. For a list of these infection click here The list is incomplete -- more are "discovered" every year.
 
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