Why I Do Not Trust The CDC

I think normally people are afraid to doubt the experts.  After all, if you can’t trust them, who can you trust?  You start to doubt everything, and a lot of people are just too afraid to lose that sense of safety.

So when you are faced with looking at something that creates doubt, many do not want to hear it.  They would rather think–oh, that person saying that is nuts, crazy, a loon.

Sometimes it is easier to believe that.  But in the long run, it is not the best course of action.  The best thing to do is get all the information you can from different sources and then make up your own mind, using your critical thinking skills.  Then argue with yourself.

I didn’t plan to not trust the CDC at any point in my life.  There were pieces of a puzzle that I just couldn’t ignore anymore.

One of the biggest issues in diagnosing and treating Lyme disease (and other tick-borne diseases) is the lack of a good diagnostic test.  No one disagrees with this.

However, the CDC does say this on its website about Lyme testing.  (Note: They do not lump all tick-borne diseases into “Lyme” here).

http://www.cdc.gov/lyme/diagnosistesting/LabTest/TwoStep/index.html

“The two steps of Lyme disease testing are designed to be done together.  CDC does not recommend skipping the first test and just doing the Western blot.  Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.”

Grammar nazi note: “western blot” is not supposed to be capitalized.

The CDC surveillance system (which is not supposed to be used for diagnosis and treatment as stated by the CDC itself) was changed by the Council of State and Territorial Epidemiologists to allow stand-alone western blots. The CDC still endorses the 2-tiered system though.

So all great and whatever for the surveillance system.  Why haven’t they come out and stated how to diagnose Lyme (and/or other tick-borne illnesses) in diagnosis and treatment? They have stated they endorse the IDSA guidelines, but we all know how well that is working for them.  Their revised average cases in the US a year missed 90% of true cases.  They guess 30,000 a year.  When they went over their data, they revised it to 300,000.  So 270,000 cases were missed.  This is a very conservative estimate by the way.  But let’s stick with it.

ILADS recently came out with new diagnosis and treatment guideline recommendations for Lyme/tick-borne diseases.  Why hasn’t the CDC read over those and decided to endorse them since they miss fewer cases, give providers and patients more options, and allow for clinical judgment instead of lazily relying on lab tests?

The CDC also says this about lab tests: “Before CDC will recommend new tests, their performance must be demonstrated to be equal to or better than the results of the existing procedure, and they must be FDA approved.”

However, FDA approval is not necessary in private lab tests since the CLIA oversees those.  So a great, wonderful, new test that could help many, MANY patients would not be good enough, and the CDC would not recommend it just because it is not FDA approved?  Why?  They are fine and dandy with lab tests that are FDA approved but only work for 10% of patients (or in other research 50%-ish).  You would think they would accept anything better than that.  I know I would.

So when the CDC is telling me things about ebola, I am left wondering if they are being 100% honest or if they really care about the people they are supposed to be protecting.  And if they do care, why such a terrible stance on Lyme?  It may not be as “serious” as ebola, but it certainly is not benign.  It kills.  It tears apart families.  It tortures its patients physically and emotionally.

And unfortunately, after you learn about how the CDC and IDSA have handled the Lyme epidemic, it takes my trust away, erasing my sense of safety regarding all other “agencies.”

So while I am not stock-piling water and supplies thinking there is going to be a huge outbreak of ebola, I also am not going to believe 100% of what is coming out of the talking heads of agencies I see on TV.

I think that is a well-informed, non-panic stance that many people should learn to embrace.

One last part of the problem I think is going on, although I could be wrong:  The CDC does not think people can handle the truth.  They think it is best to say not to panic and then proceed to be very vague.  This causes much more panic than the truth would.

Even if people don’t out-and-out realize it or are not able to articulate it, we know no one can know absolutely everything about everything, especially a living thing that mutates.  When the CDC (or agency like them) acts like they have everything under control and they know 100% what is happening and what will happen, that makes us suspicious.  Either they are so naive to think they know everything, or they do not know everything and are hiding something.

The type of person/agency I would trust quite a bit more: One that is honest and realizes they can’t possibly know everything about everything, tells me this, and then keeps me informed about what they are finding out.

Thus, the FINAL thing that makes me not trust anything coming out of the CDC: Why don’t they see that simple answer?  Heck, even I can see that is necessary with an epidemic.  So are they

1. Too naive?

2. Hiding something?

3. Hiding something AND not caring that I know they are hiding something?

I think that final one scares me most of all.

This Is War (Video)

I can be such a perfectionist, so I am not 100% happy with this video.  However, since I am working on a bigger, better, much longer one, I thought I should focus on that one and let this go as is.

I NEED MORE MATERIAL for my bigger, better, longer vid.  If you have any videos or photos you would like to contribute, please email me at winonalyme (at) yahoo.com

If you want credit, a link, a mention, whatever in the video, please give me the info that you want included.

If nothing else, just sharing this video will help get the word out.  🙂

–Loon Out!

Lyme rash photos

Lyme and tick-borne rashes are not just “bull’s eye” rashes. Unfortunately, not many providers know this. They also do not realize that many with Lyme never get or see a rash. You can find other photos on the internet, but these are a good starting point.

I have heard stories of providers asking patients if they have had “a bull’s eye rash.” I thought maybe they were simply exchanging the word for “erythema migrans” and know they don’t actually mean “bull’s eye.” However, I have also heard various accounts of patients saying their provider said “yes, you have a rash, but it is not a bull’s eye rash so it must not be Lyme.”

From Dr. Elizabeth Maloney’s 2009 paper: Which can be found here
http://mnlyme.com/files/The_Need_for_Clinical_Judgment_in_the_Diagnosis_and_Treatment_of_Lyme_Disease.pdf

“An EM may have one or more of the following characteristics: homogeneously erythematous color, prominent central clearing, target-like appearance, central vesicles or pustules, partially purpuric, not scaly (unless topical corticosteroid creams have been applied or they are old and fading).19,29,39 And, it must be distinguished from: tick bite hypersensitivity reactions, insect or spider bites, contact dermatitis, bacterial cellulitis and tinea. 29,39 ”

I believe all providers in the US, especially those in the “severe risk areas” should read this VERY informative paper. I especially like how she uses words from some of the first researchers, including Steere and other IDSA guideline authors, explaining how this disease will present with a group of symptoms but not many exam findings.

It is time to end misdiagnosis because of faulty labs. If a patient goes to a provider with complaints of fatigue/exhaustion, myalgias, memory/cognitive problems, joint pain, headache and are tested for Lyme which comes back negative, it is a good idea to rule out other things but ALSO the differential diagnosis of Lyme should stay high on the list.

I have heard of providers seeing all these symptoms (and sometimes more), nothing else found when doing a good work-up for other things going on, then: give them a course of steroids (!!!), send them to a psychiatrist, rheumatologist, pain specialist, or orthopedist, or they just continue treating symptoms without any answers at all.

I don’t think these providers should try treating the Lyme unless the clinic/hospital sets up an ILADS treatment guidelines protocol. (they already use an IDSA guidelines protocol). If they can’t do this, I think as they should refer them to a Lyme specialist just as they have referred them to other speacilistts. They should give patients information from ILADS and IDSA and go through each set of guidelines for treatment from each and let the patient choose. Sometimes, there will only be one choice because the IDSA guidelines will state not to treat many of these patients.

Any clinic and/or hospital that does this, especially in the severe risk areas, will quickly achieve the desired status of being ahead of the game in fighting this very complex illness.

I know many of these places run on profit and reputation. They want to be seen as the best and attract people from all over the country because they do such-and-such better than the others. This disease has such a HUGE market that is untapped. There are so many wanting and needing treatment and so few places to get it.

When done using the current science, which is also in line with what the IDSA guideline authors originally stated (symptom rich and exam poor), using the ILADS treatment guidelines with advice from those who have been treating patients for years (like Dr. Jones, Dr. Jemsek, etc.), there would be very little risk and very much to gain. Places like Inanna House are seen as trailblazers and heros; giving to the very sick a place to finally get help. How can hospitals and clinics not want this?

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