My Life with Multiple Chronic Illnesses, Including Lyme Disease

Friday, July 22, 2011

The untruths told by the CDC are getting WORSE, not better!


From an email I received from a Lyme Warrior and friend:

For those who think we are making progress with the establishment regarding Lyme disease, this will likely cause you to rethink that idea. In my eleven years of Lyme advocacy I've watched the CDC steadily retreat from a more balanced presentation of Lyme to one where they walk in lockstep with the IDSA, spewing the same myths and misinformation. Sadly rather than progress with regards to understanding Lyme, it seems the CDC is choosing to move farther and farther from the truth.

Below is just a sample of lies from the CDC (bold text indicates the most egregious ones):

Full text of CDC answers to Frequently Asked Questions about Lyme located here:

CDC states:

"Finally, blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease."

"There is, however, a great deal of misinformation regarding tickborne coinfections on the internet. The possibility of having three or more tickborne infections or having pathogens such bartonella or mycoplasma (which have not been shown to be tickborne), is extremely unlikely."

"This means that if your blood tests positive, then it will likely continue to test positive for months or even years even though the bacteria are no longer present."

My serologic (blood) test for Lyme disease is still positive even though I finished 3 weeks of antibiotics. Does this mean I am still infected?
No. The tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria, Borrelia burgdorferi. Your immune system continues to make the antibodies for months or years after the infection is gone. This means that once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present. 

I heard that if I get Lyme disease I will always have it. Is that true?
No. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.
Can you recommend a doctor who is familiar with diagnosing and treating Lyme disease?
The American Lyme Disease Foundation (ALDF) keeps a national list of doctors who are familiar with the diagnosis and treatment of Lyme disease and other tickborne infections. You can access this list by:
Please note that CDC cannot evaluate the professional qualifications and competence of individual doctors. The inclusion of a doctor on the ALDF list should not be seen as an endorsement by CDC. You could also choose to see a doctor in your area who specializes in infectious diseases. Often these doctors are affiliated with a university."

Why does CDC only link to one set of treatment guidelines?

CDC believes that the Infectious DiseaseSociety of America (IDSA) guidelinescurrently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease. The IDSA, with input from CDC expert and other doctors, has developed and published Lyme disease treatment guidelines." 
"In contrast, Lyme disease in North America is caused by a specific type of bacteria,Borrelia burgdorferi, which is transmitted by two species of blacklegged ticks, Ixodes scapularis and Ixodes pacificus. While blacklegged ticks exist in the southern U.S., their feeding habits in this region make them much less likely to maintain, sustain, and transmit Lyme disease."

Of course, WE know better....we know that:

(1) if you've had Lyme longer than a few weeks, you will likely need a LONG course of antibiotics to recover (months or even years of antibiotics).

(2) Lyme-infected ticks have been found in 49 out of the 50 states.  You can catch it literally anywhere! Lyme is also becoming a very serious problem in Europe and Asia.

(3) If you have Lyme disease, or have ever had it, you should NEVER donate blood.  There's too great a risk of passing the disease on to others.

(4) The IDSA guidelines were deliberately written to conceal the truth about Lyme disease; the controlling members of the panel have a vested financial interest in muddying the waters and making light of the issues.  The CDC is now drinking the IDSA KoolAid (guzzling it, actually).

Saturday, July 9, 2011

You know you have Lyme when....

Retrieved from the "Truth About Lyme Disease Forums" on 5/6/2011 (and slightly edited)


1) You don't care where your spouse goes, just as long as you don't have to go along.

2) You are cautioned to slow down by the doctor instead of by the police.

3) "Getting lucky" means finding your car in the parking lot.

4) Your sweetie says, "Let's go upstairs and make love" and you answer, "Honey, I can't do both!"

5) Everything hurts; but you don't know when or where it will hurt.

6) You're asleep, but others worry that you're dead.

7) You get exhausted from just waking up.

8) Your children can do math better than you can.

9) People call at 7 pm, and ask, "Did I wake you?"

10) You know all the answers, but nobody asks you the questions [if for once you don't have brain fog].

11) You look forward to your IV infusion of antibiotics [or oral antibiotics].

12) You turn down the lights because of photosensitivity rather than romance.

13) You sit in a rocking chair and get motion sickness. even when the rocking chair isn't moving.

14) Your GPS becomes your best friend when driving.

15) You get motion sickness when you drive. Forget about trying to be the passenger!

16) You burn the midnight oil until 9:00 PM or 1 AM or 6 AM depending on your internal clock's daily computations. Everyday is different.

17) You put the margarine in the toaster oven and try to butter your bread. You put the margarine in the cupboard, the knife in the refrigerator, and the toast in the sink. Then you walk around in circles trying to find the toast.

18) You get exercise by going to the bathroom 10 or more times a day.

19) One shelf of the refrigerator is filled with abx (or supplements, herbs, etc)

20) You can't remember how to turn the shower off.

21) You can't figure out how to get the key out of the ignition [you forgot
about the little black button you push in].

22) You can't find your way home and you only took a walk around the block.

23) When your little black book contains only names ending in M.D.

24) You get winded playing chess.

25) You look forward to a dull evening.

26) The best part of your day is over when your alarm clock goes off.

27) You have too much room in the house and not enough room in the medicine cabinet.

28) When you wake up with that morning-after feeling and you didn't do anything the night before.

29) When it takes longer to rest than to get tired.

30)  There are three signs of Lyme Disease. The first is your loss of memory, the other two I forget.

31) The only part of your body that gets a "workout" are your thumbs - from clicking on that remote or mousepad all day.

32) When your idea of cleaning the house is sweeping the floor with a glance.

33) You know you have Lyme when you stop to think and forget to start again

34) When you wake up screaming and stressed - then you realize you haven't fallen asleep yet.

35) When your day was a total waste of makeup.

36) When you think to yourself: "This ain't no party...this ain't no disco..."

37) When all the pharmacists and lab workers in town know you on a first name basis.