Adjusting our Expectations

From the recent CDC Statement on November 5th, 2009

The primary goals of the investigation are to help us learn more about who may be affected with this condition and the symptoms they experience and to generate hypotheses about factors that may contribute to it.

There are three primary goals stated in the November 5th, 2009 release above. By examining these three goals we can begin to calibrate our expectations.  My point here is not to beat up on the CDC and I’m not going down the conspiracy path that they know what Morgellons is and are withholding the truth. I reacted negatively when the November 5th statement was published and have been thinking about it for a while. When they do finally publish the results don’t be surprised if I withhold comment on it for a few days. I want to avoid making harsh statements based on pure emotion. Lets take a look at the three goals.

Goal 1 – To help learn more about who may be affected

This to me indicates that they are looking for a profile or medical signature that we all have in common based upon the testing they have performed. This is not a bad tactic and probably the correct course of action. Why us? We’d all like to know.

We’ve all heard people report on forums that they were involved in the CDC study. I’m not sure I believe any of those reports which also usually state that the testing that was done was routine blood work. Discounting these claims I tend to believe that most likely the blood work performed was probably routine. By this I don’t mean they merely checked white and red blood cell counts. Of course they would have done more than that. I’ve had extensive blood work done as have most of us. My endocrinologist did extensive blood work, and my GP as well, nothing was found. However, I still consider all the blood work that I have had done to be routine blood work (though extensive). So, probably a battery of tests were run on the patients blood.

However, I wonder if discovering a profile wouldn’t be better served by testing similar to what Pamela has been talking about which involved the tests below (more on this here). I am very doubtful that they performed any tests similar to the ones listed below.

I would like to share and update everyone on the amazing findings in regards to my testing.
The testing called ‘Organic Acid Urine test’ and ‘Comprehensive Stool Testing’

This is what they found..

  • Bacteria Over growth Bio Film Coating Stomach and Intestine
  • Chronic Inflammation
  • Adrenal System Overload
  • Oxidative Stress
  • Gamma strep 4+
  • Citrobacter freundii 4+
  • Enterobacter sakazakii 4+
  • Kebsiella pneumonia 4+
  • Candida spp. 2+
  • Low acidophilus reading
  • PH acidic

These types of tests are probably more likely to find the common thread (no pun intended) linking us altogether. The ones I highlighted in blue above I think are likely to be found in all of us. I think the order that Pamela listed her findings in is interesting (albeit totally coincidental). With the blue items on the outside and the four guys in the middle we are looking at a rotten sandwich. However, the four guys in the middle, in my honest opinion, are meaningless. Get rid of the two pieces of bread and say goodbye to the opportunistic bad guys. However, that said, I also think you are probably likely to find most of the blue items in a large part of the general population as well making such a profile really hard to pin down specifically to Morgellons sufferers. The task really begins to appear like looking for a needle in a haystack.

However, the problem is tests like those mentioned above are probably viewed as “alternative” by the CDC even though I think they can be as valuable as blood work. I would really like to see two different labs run these same tests and see how close the results match. The problem is also that Western Medicine would immediately think the four bad guys in the middle (the lunchmeat) are the cause, when in reality what you are looking at, in my opinion, is poor terrain ripe for opportunistic invaders of all kinds. Would taking a bunch of antibiotics get rid of the four bad guys or cause the sandwich to get even bigger? In other words, is your body lacking antibiotics or is something else at work here. I don’t buy the weak immune system explanation for anything, the terrain must totally fail for the immune system to be overrun. A weak immune system is an effect not a cause.

Goal 2 – Record the Symptoms

This was probably just the result of interviewing the patient and recording their symptoms, some of which may have been visible at the time of the interview such as lesions or rashes or the little red pin prick bite marks and so on, possibly fibers. Also, psychiatric evaluations were probably gathered even if the patients weren’t aware that evaluations were taking place.

Goal 3 – Generate A Hypotheses About Factors That May Contribute to it

This could be interpreted many ways. However, taking at face value it means to state what they think might be causing  (given all of the information they have at hand) the condition called Morgellons, or as they refer to it “Unexplained Dermopathy”. I’m not really fond of the CDC moniker as it conveys that this condition is merely a skin condition.


Given the three stated goals of the study as stated in the November 5th statement I think those hoping that the CDC is going to identify the “culprit” and possibly recommend treatment are hoping for outcomes that are outside of the scope of the project. I could be completely wrong however. I realize the NCZVED group is analyzing the results but I really don’t read to much into that. The only “eureka” moment I could foresee is the discovery of some kind of mite or insect within the skin. However, Wikipedia still claims that the researchers involved in the Oklahoma Collembola study were themselves delusional (outrageous) which reveals the hostility regarding this outcome. However, assuming they did actually find the cause (which I believe is extremely unlikely) it would mean a mere 300k and a little effort was all it took to crack this case which wouldn’t look very good on anyone’s part. Especially considering the suffering and havoc that has been left in the wake of Morgellons including wrecked lives and families, devastating financial losses, and lost lives. My guess is the Morgellons problem is much more complicated than a small 300k study is going to solve.

My gut feeling is that the report has two possible outcomes. The first would be to state Morgellons is mostly a psychiatric condition, but I don’t think this will be the path chosen. The second outcome, which is likely, is to reveal that further study is needed, which is probably also going to be the truth.

In the future we could all benefit if the CDC would solicit some input from the Morgellons community, but I totally understand why they cannot. Incorporating tests like those mentioned above by Pamela could prove to be very useful. Eventually, it may become necessary to culture what is in our gut and possibly even our blood and identify strains specifically. For example, it isn’t enough to say that “Pseudomonas Putida” was found. The actual RNA sequencing and/or signature (I’m over my head on this part) of the particular strain (of whatever is found) will need to be identified. Is what is thriving in our gut a man made strain or is it natural? If it’s man made then we need to track down the source and prevent others from having to go through this horrible experience, if it’s natural what is the vector? I’m not saying that Pseudomonas Putida is the cause, I am merely using it as an example to convey that ultimately some very low level lab work is going to have to be done.

And finally, in the end, we have to consider that the cause might never be found. And just as we are doing now we must take care of our bodies the best way we know how and work at staying as healthy as we possibly can. We need to be proactive and keep the concept of “do no harm” always at the forefront. Eventually, a protocol will be stumbled upon that will work for most people, I truly believe that, but we are not there yet.


Comments on: "One More Look at the Nov 5th, CDC Morgellons Statement" (4)

  1. MCS—
    Great work here, as usual—–it’s my wild hope that researchers working on this will somehow be led to this site and begin to broaden their perspective. In the meantime, you’re helping us to recalibrate our expectations.
    Also–thanks for the photo (previous post)! It’s nice to put a friendly face to your writer’s voice.
    Sites like yours and bring me such comfort in the day to day struggle with this illness. I suspect it’s not always easy to put yourself out there in the world—-and I’m deeply grateful that you continue to do so.
    Warmest regards,

  2. Joe Keleher said:

    If there was one single suggestion I could make for the CDC it would be to have a chemist find out what the specks/dots are.

  3. It’s important to exercise ones brain if afflicted with this. I propose that those suffering wait no longer for authority to provide an answer. Take out a stafford loan and go back to school. Leitao has been trying to take this head on for 8 years… that’s a PhD practically…. Due to folks like yourself, Carnicom, Staninger, and Kammy, I have reenrolled in college with a current focus on Biotechnology followed up with Materials Engineering with a focus on Nanotech/Biomaterials. Finished my first semester back this week with Straight A’s. Tough to accomplish while working ft and dealing with the various manifestations. I don’t expect anyone who isn’t familiar with the symptoms to “believe” in them. Spend the governments money on independent research indirectly. Make them “fund” your personal research… Transgenics? Environmental Pollutants? We’ll never know if we count on someone else to give the nod. Just look at the history of medicine and psychiatry and you’ll understand how vacant the empathy for human suffering can be.

    Thanks again for the personal inspiration MCS.

  4. I have most of the more common symptons associated with morgellons. But, I don’t suffer ‘threads’ emanating from my body, nor do I have a loss of energy, I have easily descernalable groupings of delta shape configurations and delta headed worms.I get bit like a son of a bitch, I can see no way to simultaneous rid my body,bedroom, clothes and vehicle of these ‘things’. I have however, found something that works , but slowly. It is additional oxygen atoms given off from hydrogen peroxide and supplements and they are leaving my skin in a state of apparent demise.

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