Monday, February 25, 2013

Chronic Lyme Disease Brings Out the Medical Hypocrites

From Jenna's Lyme Blog
 
Perhaps it is too early for some to applaud the new blood culture to diagnose Lyme disease.  In spite of the fact that all testing so far shows the test to be 100% accurate (barring contamination,) Medscape's Medical Journal recently published "Lyme Culture Test Causes Uproar" jumping on this test as if it is a plot to get people who have aches and pains, and think they have Lyme disease due to the internet, to spend money on a test that hasn't been adequately validated.

 The MMJ's journalist, Janis C. Kelly, reports:

Physicians on all sides of the Lyme disease arena agree that a reliable culture test for active Borrelia infection would be a breakthrough. They differ on whether it is a good idea to market a blood test to consumers before it has been validated, peer-reviewed, published, reviewed by the FDA, or widely vetted by infectious disease experts with experience in Borrelia infections.

Joseph J. Burrascano Jr, MD, senior vice president of medical affairs and medical director for Advanced Research Corporation, voiced the complaint of many in the field that the 2-tier Lyme disease test approved and used by Centers for Disease Control and Prevention (CDC) relies on a serologic assay that can only indicate possible past exposure.

"What is very much needed is a direct test that can indicate whether living Borrelia are present in a patient," Dr. Burrascano said.

No Published Data

Soon after Advanced Laboratory Services' initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.

Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished.

According to Dr. Burrascano, "All clinical samples turned out to be B burgdorferisensu stricto, which would be expected, as the clinical samples all came from patients who met the strict CDC surveillance case definition as having Lyme…. In addition, when a large number of normal controls were tested (well people), none of them had any positive cultures, meaning that there were no false-positives."

Dr. Burrascano said that a paper reporting the data has been submitted for publication and that "2 university-based research labs are each separately well on their way in validating the results of Advanced Labs."

The article puts a great emphasis on the cost of the test ($595) – obviously unaware how insignificant this is to individuals and sometimes entire families who are incapacitated with painful symptoms that doctors at numerous clinics and/or hospitals can't diagnose.  This leaves the patient(s) feeling crazy, frustrated and desperate.

Where can we turn?

Dr. Burrascano is a trusted resource for those of us who have suffered or are currently suffering this nightmare of "shadow boxing", and is a source of hope and understanding at a time when the major medical establishments seem to want anyone who mentions "chronic Lyme disease" to be institutionalized for quackery.

This article is a great example.

For instance, Advanced Lab Services is vilified for using the following quote/fact in their marketing:

"The CDC estimates that in the USA there are more than 300,000 new cases each year and there may be as many as 4 million people currently infected."

This statistic doesn't surprise anyone who is currently involved in the research or treatment of chronic Lyme, however,  challenged because this information is extrapolated from information published by the CDC in different places.  And yet a representative from the CDC refutes the statement as untrue which causes conspiracy theorists to go bonkers! Perhaps the CDC needs better training on the issue of Lyme disease as they still maintain that the two-tier testing is to be used as supportive data for diagnosis – not as a diagnosis itself. However, the same government agency requires a positive ELISA and 5 positive bands on the western blot for a confirmed case of Lyme disease for their national monitoring of the epidemic.

Another glaring example of hypocrisy in this article comes from Gary Green, MD, infectious diseases chief and clinical director of the HIV Team & Travel Clinic at Kaiser Permanente in Santa Rosa, California.  He is quoted as follows:

Dr. Green said, "The problem with a test that has not been validated and not been tested outside the source of invention is that we don't know whether it is at all accurate. Using an unvalidated test in modern medicine is dangerous and unethical."

"Unfortunately," Dr. Green said, "many people truly struggling with symptoms they think may be related to chronic Lyme disease understandably lose objectivity about a test like this to discern whether it is credible or valid. The medical community needs to be critical of itself and of the tests that we use."

Dr. Green added, "What I would say to a patient concerned about Lyme disease, struggling with a myriad of symptoms, is that we don't know if this test is valid. Until it is validated, it is irresponsible to use this in clinical medicine for the fear that you might be wrong in diagnosis. The harm is that perhaps there is a different and accurate etiology we are missing, and we get misled with a misdiagnosis from this unreliable test result. The patient may have objective disease or infection from another etiology that would not be identified if we hang our hat on this misinformation. It will derail diagnosis and treatment."

Where was Dr. Green when the two-tier testing protocol was developed?  Where is the validation evidence that shows reliable diagnosis results for those? Mustn't we all agree that the two-tier protocol is dangerous, unethical and irresponsible to use a diagnostic tool because it, too, is not reliable?

What are the doctors afraid of?

They are afraid that this new test would prove all of the "false positives" in the ELISA and western blood assays are actually true positives.  This would raise the number of Lyme infected people into the tens of millions of people if not more.

They are afraid that a reliable Lyme test would prove chronic Lyme disease not only exists, but that the powerful IDSA along with the self-righteous leaders of that great organization have been WRONG.

They are afraid of losing respect and perhaps even self-respect for treating suffering patients like idiots.

I will end with this true story that happened to me in Boston.  After months of doxycycline my symptoms had only gotten worse after my initial crash after decades of mystery illnesses and several organs removed due to "unknown" infection.

One of the top infectious disease specialists at Lahey Clinic (also a professor at Harvard Medical School) told me he would not order a western blot because that would be fishing for a false positive. I asked how it would be false if I had all the symptoms for Lyme disease.  He replied:

"Yes, you have all the symptoms for Lyme disease but I don't believe in chronic Lyme disease."

Look for my book "Scientific Evidence of Chronic Lyme" coming soon.

Jenna

 

 




Bob

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Bob Cowart
Phone: 510-540-6667
Facebook: bcowart1
Twitter: @bobcowart

Monday, February 18, 2013

Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum

Here's an important study to check out. This is the kind of thing we need more of. We need to learn whether or not Bb infection persists after relatively short (14 or 30 day) antibiotic therapy.  


In this report we present a method to cultivate Borrelia spirochetes from human serum samples with high efficiency. This method incorporates improved sample collection, optimization of culture media and use of matrix protein. The method was first optimized utilizing Borrelia laboratory strains, and later by demonstrating growth of Borrelia from sera from fifty seropositive Lyme disease patients followed by another cohort of 72 Lyme disease patients, all of whom satisfied the strict CDC surveillance case definition for Lyme disease. The procedure resulted in positive cultures in 47% at 6 days and 94% at week 16. Negative controls included 48 cases. The positive identification of Borrelia was performed by immunostaining, PCR, and direct DNA sequencing.

Severe and Constant Stomach Distension


I am forwarding this from the CA Lyme listserv that I subscribe to, because I am having this problem, too. The author of this note seems to have had success by changing to different probiotics.

Wed Feb 6, 2013 5:59 pm (PST) 

I had such severe bloating: it put my back out, which was crippling .... and kept me from functioning, altogether. Among other things, it could be a problem with clostridia. At least, that approach is what worked for me. You might try an experiment using "Culturelle". They sell it at Walgreens - but best price is at Costco. It doesn't say it on the label (though, it does say on the product's website) that it is Lactobacillus rhamnosus. For 3 of 4 people I've recommended to try, it worked - and, big time! It doesn't take long to kick in and it's safe to take A LOT of it, once you try a small amount to be sure it doesn't disagree with you, as an individual.

Along with this, -definitely- stop taking any Lactobacillus acidophilus or L. plantarum. They are the most "fermenting" (gas creating) of the probiotics. It could be acidophilus, alone, that's causing the problem!

Lastly, do look at Harry's site, CustomProbiotics.com. If all the above works for you, then his product: Lactate-D Free, is the best I've found. It has completely tamed my gut. I no longer have any bloating. ....And it used to look like I was carrying triplets!!! He's available by phone - number at his website. He's my probiotic guru.

His products might seem high priced, but they last -so- long that, ultimately, they're completely reasonable. "Lactose-D Free" -is- his product that "cured" me.

Another thing about the fermenting and lactate producing probiotics is that they affect us neurologically, as well. Harry sent me two studies that showed why people with Chronic Fatigue Syndrome must avoid them - hence, his Lactate-D Free formula.

A trial with the Culturelle will tell you almost right away, if you're on the right track for yourself. But, DO be sure you stop the acidophilus and any plantarum, also.



Friday, February 8, 2013

Zinc 'keeps immune system in check'

Woman taking a zinc tablet
Zinc has been shown to reduce the severity of the common cold

Researchers say they have gained a key insight into how zinc helps the immune system fight infection.

A study shows that zinc stops the immune system from spiralling out of control, as happens when people develop sepsis.

The researchers say the findings could also explain why taking zinc supplements at the start of a cold can stem its severity.

It is thought the finding could have implications for other diseases.

Although research has highlighted the importance of zinc for the immune system, because the mineral has many complex roles in the body it is not understood in any detail how it helps fight off infection.

After previous studies in mice, the researchers from Ohio State University had shown that zinc-deficiency could lead to excessive inflammation.

This is what happens in sepsis, when in response to a severe infection, the body goes into overdrive, with potentially fatal consequences.

Feedback loop

Through further experiments in human cells and animal studies the researchers found that a protein called NF-kB lured zinc into the immune cells that responded fastest to fight infection.

Once inside, the zinc then put the brakes on further activity in the NF-kB pathway, slowing down the immune response and limiting the amount of inflammation, the study, in Cell Reports, indicated.

It was effectively a feedback loop, stopping the process getting out of hand, the researchers said.

Study leader, Dr Daren Knoell, said: "The immune system has to work under very strict balance, and this is a classic example of where more is not always better.

"We want a robust inflammatory response, which is part of our natural programming to defend us against a bug.

"But if that is unchecked, and there is too much inflammation, then it not only attacks the pathogen but can also cause much more collateral damage."

He added that the finding narrowed the gap in scientists' understanding of the role zinc had in fighting infection, but that it was too early to make the leap to zinc as a treatment for sepsis.

Intriguing

Zinc has been shown to reduce the severity of the common cold in humans and possibly shorten its duration.

"Whether this is because of improved balance in immune function, similar to what we report with sepsis, remains to be proven but perhaps requires further study," Dr Knoell said.

Prof John Beattie, head of the micronutrients group at the University of Aberdeen, said NF-kB cropped up in many processes in the body, including atherosclerosis, which leads to blocked arteries seen in heart disease and has been linked to zinc deficiency.

"The implications of the work extend beyond the impact of zinc on innate immune function," he said.


** Zinc 'keeps immune system in check' **
Researchers say they have gained a key insight into how zinc helps the immune system fight infection.
< http://www.bbc.co.uk/news/health-21372790 >
 
 

Sunday, February 3, 2013

Lumbrokinase for biofilm busting?

From Jenna's Lyme blog:

Has anyone heard of Lumbrokinase?   Well, if you haven't, lumbrokinase is a group of six, novel proteolytic enzymes derived from the earthworm Lumbricus Rubellus, and it is slowly establishing itself as possibly the best and brightest new treatment for chronic Lyme sufferer.

I say a new treatment because it is new information for me, generously supplied by a fellow Lymie Ted Patterson who has tried it and feels better than he has in years. The more I researched this enzyme, the more excited I have become.

First, lumbrokinase has been used successfully in China's four top hospitals in nerve and infectious diseases since 1995 without any harmful side effects. Initially used for the potent ability to dissolve blood clots and vein thrombosis, it was soon discovered to improve the quality of blood in a number of ways that are still being discovered.

According to Allery Research Group,   medical reports from leading researchers and doctors have further discovered the power of lumbrokinase to not only dissolve clots which obviously helps protect against heart disease and strokes, but also:...

For the rest of the story: