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Dr Jemsek sends us a story about a pro athlete who’s contracted LYME a second time. Can you imagine having to beat it twice, as a pro?

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Hall of Famer Tom Seaver rallies from lyme disease

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.By David Brown | Big League Stew – Fri, Mar 15, 2013 1:25 PM EDT.. .
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(AP)Tom Seaver had not been acting like himself for a while, columnist Bill Madden noted Friday in the New York Daily News. And alarm bells for friends and family rang loudest in June, when Seaver released a statement congratulating Johan Santana for throwing the first no-hitter in New York Mets history:

“I’ve never met Johan personally, but what I’ve heard about him is he has a big heart and is a huge competitor.”

The only problem with that was Seaver had joined Santana in a half-hour SNY TV special in spring training of 2008 in which they talked at length about pitching strategies.

“I didn’t know what was happening,” Seaver, 68, said this week.

Seaver’s bizarre statement on Santana freaked some people out, and rightly so. How could he not remember meeting him? Was he being oddly arrogant or … was he sick?

In denial afterward, it was not until he also forgot the name of a man who had worked at his vineyard for seven years that his Seaver’s wife, Nancy Seaver, made him see a doctor. Comprehensive tests revealed lyme disease.

In a way, it was a relief: It wasn’t dementia. He hadn’t had a stroke. There wasn’t a terminal illness, no brain tumor. In fact, Seaver had contracted lyme disease before, in 1991. Then, he probably was infected by deer ticks while working in his garden. This time, it probably happened in his vineyard in California, where he grows grapes for his award-winning wines.

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Seaver’s recovery has been slow, but steady. Seaver says he’s working 4-6 hour days again, which was impossible when he was at his worst.

“But once it gets into your blood system, it causes real problems,” Seaver said. “I’m taking 24 pills a day now, most of them vitamins, plus one penicillin pill to get my chemical balance back. It’s a cycle that kills off all the spirochetes that junk up your system. It’s been a slow process in which I’ll still feel like I have a bad case of the flu for days, but these past couple of weeks they’ve been less and less. I haven’t had a glass of wine or a beer in eight months and I don’t miss it.”

And he can remember his own life again. And what a baseball life.

Seaver’s own no-hitter came with the Cincinnati Reds in 1978, and his 300th career victory came with the Chicago White Sox in 1986, but his greatest seasons came during his formative years with the Mets — the Miracle ’69 club, most notably.

Now it’s up to Johan Santana to make another good memory with the Mets for Seaver, so he can be properly congratulated on it.

LYMEPOLICYWONK: The CDC, the FDA and Lyme Disease Lab Tests: Two-Tiered Tests, IGeneX, the C6, and the New Culture Test, by Lymedisease.org

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The CDC website now states that before the 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.” But is FDA approval required for diagnostic tests? No, FDA approval is only required for tests that are marketed to other labs. Single lab tests, like those offered by IGeneX and Advanced Laboratory Services (ALS) do not require FDA approval. Instead, federal law requires that they undergo a rigorous validation process established by the Centers for Medicare and Medicaid Services (CMS) and Clinical Laboratory Improvement Amendments (CLIA). CMS and CLIA require developers to prove that their tests are accurate, precise, sensitive, and specific prior to marketing. Both IGeneX and ALS diagnostic tests are CLIA and CMS approved.

To pass CLIA, Lyme tests must demonstrate that they accurately detect positive samples of blood and test negative on control samples of blood. This is how these tests are validated. These samples are provided by the CDC—so there is no dispute that the samples are accurate. Why is the CDC asking for more than compliance with federal regulations using CDC sample sets?

And, what about its other requirement—that the test must be equal to or better than the existing two-tiered testing procedure recommended by the CDC. Research shows that the current two-tiered testing procedures do more harm than good. While the testing has few false positives (called “high specificity”), it has many false negatives (or “low sensitivity”). Two-tiered testing misses 44 of every 100 patients who have Lyme disease. Imagine if that were the case with AIDS! Take a look at the table below from the article “Let’s Tackle the Testing”:What plan do the CDC and NIH have for the future of testing? Well, the NIH has invested heavily in the C6 test. The C6 is commercially marketed by two companies, Immunetics and DiaSorin, both of whom have commercial ties with Dr. Wormser, who authored the IDSA guidelines which require positive lab tests for diagnosis. In addition, Immunetics receives NIH research grants, which fund Dr. Wormser’s research. Dr. Barbara Johnson of the CDC and Dr. Gary Wormser, who authored the IDSA guidelines, have jointly published a number of articles supporting this test, which is FDA approved, but performs no better than the two-tiered strategy. So, why is the American public funding C6 research?

And, how do tests the CDC is targeting fare? The IGeneX test is called on in a CDC “warning” issued in February 2005 cautioning against tests that “interpret Western blots using criteria that have not been validated and published in peer-reviewed scientific literature.” IGeneX test reports specify whether the test results meet the CDC interpretation criteria, which requires 5 of 10 IgG bands. However, other studies were able to increase the sensitivity of the test to 93% or higher by using an interpretation requiring 2 of 5 bands. So, IGeneX also reports this information. Why is the CDC ignoring these studies which have a far greater sensitivity?

What about the ALS culture test? The CDC surveillance criteria list “culture test” as an acceptable test, and culture tests are widely regarded as the “gold standard” of testing. As noted above, the ALS test has been validated using the CLIA and CMS requirements. However, it is a relatively new test. A recently published study of the test demonstrated that it had sufficient sensitivity and specificity, but these findings should be confirmed in additional studies. Why isn’t the government funding this type of research?

It’s time for the CDC and the NIH to abandon the failed two-tiered strategy and stop funding tests like the C6, which do no better. Patients want diagnostic tests with greater sensitivity so that patients can get diagnosed and treated. A recent article pegs the number of Lyme tests performed annually at 3.4 million—which translates into a market of roughly $340 million a year. Not only do these numbers suggest that there is a lot more Lyme around than the CDC or IDSA acknowledge, but they also tell us that commercially vested interests and the researchers they consult with may have a stake in keeping the status quo in lab testing regardless of how bad the tests are. Could monetary considerations have something to do with opposition to new lab tests?

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.

Bibliography:

The American Association for Clinical Chemistry, which is a professional association of over 8,000 members concerned with blood diagnostic tests, has an extensive website describing diagnostic lab test validation requirements. Interested readers should check it out.

Centers for Disease Control and Prevention, Lyme disease: Two-step Laboratory Testing Process http://www.cdc.gov/lyme/diagnosistesting/LabTest/TwoStep/index.html

Centers for Disease Control and Prevention. Notice to Readers: Caution Regarding Testing for Lyme Disease. Mmwr. February 11, 2005 February 11, 2005;54((05)):125.

Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J. Clin. Microbiol. 33(2), 419–427 (1995).

Kelly, J. Lyme Culture Test Causes Uproar. Medscape (Jan 30, 2013).

Ma B, Christen B, Leung D, Vigo-Pelfrey C. Serodiagnosis of Lyme borreliosis by western immunoblot: reactivity of various significant antibodies against Borrelia burgdorferi. J. Clin. Microbiol. 30(2), 370–376 (1992).

Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. Improved culture conditions for the growth and detection of borrelia from human serum. Int J Med Sci. 2013;10(4):362-76.

Shah JS, Du Cruz I, Narciso W, Lo W, Harris NS. Improved clinical sensitivity for detection of antibodies to Borrelia burgdorferi by Western blots prepared from a mixture of two strains of B. burgdorferi, 297 and B31, and interpreted by in-house criteria. European Infect. Dis. 2010;4:56–60.

Stricker RB, Johnson L. Lyme wars: let’s tackle the testing. BMJ. 2007 Nov 17;335(7628):1008.

Related posts:
1.LYMEPOLICYWONK: New Lyme Disease Culture Test Could be Game Changer
2.NEWS: Clarification on new Lyme culture test
3.LYMEPOLICYWONK: Embers Monkey Trials Part 4. Lab Tests Fail to Detect Lyme Disease.
4.NEWS: Lyme culture test causes uproar
5.NEWS: Latest info about new Borrelia culture lab test

google these to read more important stories

Baseball Hall of Famer Tom Seaver is battling Lyme disease

Dr. Charles Ray Jones’ appeal reaches Connecticut Supreme Court

Virginia governor signs Lyme testing disclosure bill

Highlights from New York City’s tick-borne disease forum

Yolanda Foster says Lyme made her “a shell of the woman I used to be.”

Zithromax/Azithromycin warninds

FDA warns Zithromax can cause fatal irregular heart rhythm

Published March 13, 2013

Reuters

The world headquarters of Pfizer Inc. in New York City. (AP)

The U.S. Food and Drug Administration warned on Tuesday that the popular antibiotic azithromycin, sold as Zithromax, can cause a potentially fatal irregular heart rhythm in some patients.

The agency said the move follows its review of a study by medical researchers as well as a company study assessing the drug’s potential for causing abnormal changes in the electrical activity of the heart.

Last May, a study in the New England Journal of Medicine compared the risk of cardiovascular death in patients who took Zithromax with those who took several other antibiotics, including amoxicillin. It found that patients who took Zithromax, made by Pfizer Inc, had higher rates of fatal heart rhythms.

Generic versions of Zithromax are also available.

In its warning, the FDA said the drug can alter the electrical activity of the heart, which may lead to a potentially fatal heart rhythm known as prolonged QT interval, in which the timing of the heart’s contractions becomes irregular.

The FDA said doctors should use caution when giving the antibiotic to patients known to have this condition or who have certain risk factors.

The at-risk group includes people with low levels of potassium or magnesium, a slower-than-normal heart rate, or people who take certain drugs used to treat abnormal heart rhythms, or arrhythmias. The drug could also cause problems in people with torsades de pointes – a specific, rare heart rhythm abnormality.

The FDA noted that other drugs in the same class as azithromycin known as macrolides also have the potential for causing QT prolongation, as do non-macrolide antibiotics, such as fluoroquinolones, and doctors need to consider all of these risks when choosing an antibiotic.

The FDA said it has updated the drug’s labels with information about the risk of QT interval prolongation and torsades de pointes.

Pfizer stressed in an emailed statement that most patients will not be affected by this label change, and that other antibiotics in the same class have similar risks.

“Patients who are currently prescribed Zithromax should talk to their doctors or healthcare providers if they have questions regarding their treatment,” the company said.

Zithromax is a popular choice because patients can take fewer doses over a shorter period than many other antibiotics. U.S. sales of the drug in 2011 exceeded $450 million, according to IMS Health.

“Zithromax has had a well-established benefit risk profile for more than 20 years and continues to be an effective treatment option for patients all over the globe suffering from many types of bacterial infections,” Pfizer said in the statement.

Shares of Pfizer were down nearly 1 percent at $27.07 in late trading on the New York Stock Exchange.

Read more: http://www.foxnews.com/health/2013/03/12/fda-warns-zithromax-can-cause-fatal-irregular-heart-rhythm/?test=latestnews#ixzz2NWRSoKbc

From a fellow Lymie…

From a fellow Lymie…

“I want you to learn the secret of being content in any and every situation. Contentment-training is a challenging process; it is learned through enduring a wide range of difficulties. You thought you were fairly advanced in this training, but then the circumstances in your life got harder. On some days you are able to cope well with your hardships. On other days you just want out! I am here to help you with your other days.” -Jesus Today by Sarah Young, p. 128

Phil 4:12, Psalm 62:8, Psalm 92:1-2

Free showing of under our skin in CT.

**Free Public Showing**
“Under Our Skin” documentary on Lyme Disease
Saturday, March 9, 2013, 1:00pm
Meriden Public Library, 105 Miller Rd,
Meriden, CT 06450
Contact Crystal Carter for more information: raincarter4hope@yahoo.com

Facts about cancer from a survivor

LATEST CANCER INFORMATION
from Johns Hopkins

AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY AND ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY …

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.

2. Cancer cells occur between 6 to more than 10 times in a person’s lifetime.

3. When the person’s immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.

4. When a person has cancer it indicates the person has multiple nutritional deficiencies. These could be due to genetic, environmental, food and lifestyle factors.

5. To overcome the multiple nutritional deficiencies, changing diet and including supplements will strengthen the immune system.

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastro-intestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.

7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.

8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of chemotherapy and radiation do not result in more tumor destruction.

9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications.

10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.

11. An effective way to battle cancer is to STARVE the cancer cells by not feeding it with foods it needs to multiple.

What cancer cells feed on:

a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Note: Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in colour. Better alternative is Bragg’s aminos or sea salt.

b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk, cancer cells will starved.

c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.

d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes t o nourish and enhance growth of healthy cells.

To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C).

e. Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer-fighting properties. Water–best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.

12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines will become putrified and leads to more toxic buildup.

13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body’s killer cells to destroy the cancer cells.

14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the body’s own killer cells to destroy cancer cells. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body’s normal method of disposing of damaged, unwanted, or unneeded cells.

15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor.

Anger, unforgiving and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.

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