Thursday, January 31, 2013

Lyme Culture Test Causes Uproar

Janis C. Kelly

Jan 30, 2013

A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called "homebrew" or laboratory-developed tests (LDTs).

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.....

To read the rest of the story:

Tuesday, January 22, 2013

Dr David Martz cured from ALS

2011 IDA Research Award - Dr David Martz

Dr. David Martz talks about his own case of ALS, and how he was prepared to die from it. As he was 'getting his ducks in a row' a colleague suggested he be tested for Lyme. Here's his amazing story of recovery from this usually terminal disease.

The 2011 IDA Research Award was presented to Dr. David Martz at the Invisible Disabilities Association Honor Awards Banquet.

Dr. Martz was chosen based upon his extensive ALS-Motor Neuron Disease and Lyme disease research as a physician and a board member of the International Lyme And Associated Diseases Society (ILADS). Born out of his personal experience with Lou Gehrig's Disease (ALS), Dr Martz has a passion to discover possible treatments for patients living with these illnesses.

Here's the video:

The NRA vs. Civilization

Unrelated rant about gun control in this country. But since anybody reading this cares about the welfare of other people, and of yourselves and your own well-being, I offer this up for public consumption. I guess I got on a roll this morning. And perhaps this says something about my state of health. I'm still shaking like a fish out of water, but my brain seems to be functioning. Kind of a miracle.

This is an open letter to anybody who is siding with the NRA and defenders of the second amendment, or anyone giving pushback to Pres. Obama and VP Biden on their efforts to control gun sales and ownership:

Using the logic of the Second Amendment to protect ourselves from either our own government becoming overbearing or against invasion by a foreign force, we should all be allowed to acquire our own arsenal of nukes, jet fighters, grenade launchers, metal piercing bullets, drones, and so on. Do you really think we can protect ourselves in this era of advanced weaponry, bio threats such as anthrax, and god knows what all else, with just a dinky ak-47, Uzi, or Glock? Let's get real. If we seriously want to be up-to-date in fail-safe self protection, we US citizens must all insist on owning not only a conventional arsenal, but also the most virulent computer viruses and keys to the digital 'back doors' so we could implant malware into the Department of Defense's or foreign invaders' computer systems. Time for a reality check, NRA -- There is no reliable way that you or I could ever defend ourselves against a government crackdown or a foreign incursion with the two shotguns we have hangin' in the gun rack in the old pickup.

On an individual level of self protection, maybe yes, under ideal conditions if I had a pistol in my pocket and somebody approached me down at the 7-Eleven where I go for my midnight slushy and they were brandishing a gun, well maybe (and that's a big maybe) I could whip it out and shoot somebody, hopefully the assailant, and not an innocent bystander or the clerk. Suppose I killed him (or her)? How would that feel? What if it were the wrong person? What if s/he didn't really have a gun? What if it was dark out and he had a hoodie on, and I just thought he had a gun because he put his hands in his pockets? I would have a homicide on my conscience while sitting in my 8' x 10' prison cell, after the trauma and expense of a drawnout trial.

In my family we all had guns. Even my mom was a crack shot. We called her Annie Oakley. She shot squirrels out of the kitchen window, just above the sink, if the squirrels were trying to poach the suet that we had meticulously hung on the Dogwood tree for the pleasure of the birds. Birds outranked squirrels in my mothers worldview. It was like a rite of passage in my family to receive a gun, typically for Christmas. (You gotta love the irony. Who, or what, would Jesus shoot?) I can still see that snapshot of me sitting in front of the Christmas tree holding my new .22 gauge rifle that my dad bought me, down at Sears. I looked a little confused. I guess I wasn't sure whether I was supposed to smile or not. The clip could hold five, maybe 10 bullets. It had a single-action bolt. We're not talking assault rifle here. Still, my dad was was a 'full-bird’ colonel in the Army reserves. He fought in World War II. We had a bunch of guns in the basement. We were supposed to know how to clean, maintain, aim, and shoot stuff at a distance, like shrpshooters do. As far as I can recall, we were never actually told why. Luckily, nobody in my family was ever shot by accident. Considering the amount of alcohol that was around, it's kind of a miracle.

Citing the Second Amendment as proof of our almost god-given right to own and use as many guns as we like is a specious argument put forward by NRA members. Okay, I am willing to compromise: I guess it's alright for everybody to own a musket, a little bag of gunpowder, a flint rock or two, and some musket balls. I think that's what the founders probably had in mind. The 13 little, new colonies were a bit paranoid about how they pissed off King George by winning the revolution with their disorganized, little ragtag army. A militia that used 'cowardly,' terrorist, guerrilla tactics. Our forefathers hid themselves in the woods, shot from behind trees, even shot officers off of their horses. (Seriously uncouth warfare etiquette. We were definitely the terrorists of the day.) But this is 2013. Arming the entire population with high-speed assault rifles, a 45 mm pistol in our pockets, and hiring thousands of armed guards to police every school in our nation is not really a solution, unless you think there's something exciting and romantic about shootouts down the street at your kids' elementary school. And foreign Invasions come in forms that we can't even predict. How come nobody had a antiaircraft missile at Ground Zero on the day the jetliners crashed into the World Trade Centers? Oops.

NRA members argue that if everyone carried a gun, then it would be easy to take down some lunatic shooter who was going on a binge in the middle of a movie theater. Is this the kind of society we want? Everybody packing a gun in their trench coat? Worrying that if you cut someone off at a stoplight that they might pull a gun on you? This isn't a rerun of Bonanza, where Little Joe saves the day with his six-shooter. Can we look to countries who have far fewer gun deaths and far fewer guns, as real-world examples of solutions to the gun-related homocide and suicide? Why are we, as a nation, so afraid to look to other nations to solve a problem that they have already solved? Are we so young as a country and so full of hubris that we can't ask someone else, someone older and wiser, for help? It's time to wake up, and grow up, America. We may still be the land of the rugged individualist, but this is no longer the wild, wild West.

I'm old enough to remember the days when there were no seatbelts in our cars. We had a real 'woodie' Ford station wagon with real wood on the sides. Mom called it Jezebel, long before I knew what Jezebel meant. Then we had a 1955 three-hole Buick, green and white. Wow, that was a beauty. Lots of chrome. Then a Rambler, a kind of ugly, green bulbous thing. Then a very uninspired and utilitarian Ford Comet station wagon, but dad finally made it up to us by coming home with a shiny new Oldsmobile Vista Cruiser. Well, it wasn't actually new. Dad had lived through depression of course, so shelling out for all those unnecessary new-car extras was against his religion. The fruit doesn't fall too far from the tree, so actually it wasn't until I was 50 that I bought my first new car. And what was it? A Prius, of course. Very economical. Anyway, the Oldsmobile Vista-Cruiser, now that car was amazing. It even had two skylights and three rows of seats, and it was as long as a fishing boat. It drove like one, too. In all of these vintage cars, three could sit comfortably on the front bench seats. There were no seatbelts and no headrests. Taking long trips in the car was just like being in the living room at home. You could jump in the back seat, up to front seat, and back again. It was a big playpen on wheels. And no seatbelts to get in the way.

But because there were no headrests, if you got hit from behind, there was a pretty good chance you'd suffer whiplash or a broken neck. I remember Ralph Nader coming onto the scene and writing his groundbreaking 1965 book "Unsafe at Any Speed: The Designed-In Dangers of the American Automobile" which accused U.S. auto makers of knowingly producing cars that endangered public safety, all for the sake of profit. Detroit went ballistic, and even took very nasty measures in hopes of the defaming and denigrating Nader. But, thanks to the guy whom we love to hate for ruining the potential election of Al Gore, now we take it totally for granted that we have not only seatbelts but maybe even six or ten airbags, and all kinds of crash-survival engineering integrated into our cars. Likewise, all it takes is a trip to, say, China to be reminded of the progress we have made as a nation in exposing and acting in the health impacts of smoking and breathing second-hand smoke. It was a tough battle against the tobacco dynasties of Philip Morris et al. but we citizens scored a 206 billion-dollar settlement on that one. Not too shabby.

My point being that there is precedent for change in this country, change that protects its citizens. Change that is necessary, and intelligent. Even if it's an uphill battle against brobdingnagian political and corporate entities that have no heart, all that is required is a unified and persistent effort.

So, there is my anti-gun rant for the day. And, I'm not stopping until something changes. That's my New Year's resolution. I guess I got inspired by yesterday's inauguration ceremony. I don't know what you thought of it, but I thought it Seriously Kicked Ass (SKA), which means in civilized lingo, it was about the most inspiring thing I've seen in a good while. That arrangement of the Battle Hymn of the Republic was seriously surreal (in a good way). All the other music was quite an amazing as well. Nice to see James Taylor. His fingers must of been freezing but he could still play his old Martin guitar. Afterwards, the local PBS TV station here in the San Francisco Bay area, showed a documentary about the relationship between Martin Luther King and Robert Fitzgerald Kennedy. If you weren't already in tears from the inauguration scene, the incredible music and poetry, and Obama's speech, that documentary would tip the scales.

There is a scene in which Robert decides that it is his responsibility as Atty. Gen. of the United States to inform the gathered crowd that King has just been shot dead. Despite fears of riots and concerns for his safety, Kennedy went ahead with plans to attend a rally at 17th and Broadway in the heart of Indianapolis's African-American ghetto. That evening Kennedy addressed the crowd, many of whom had not heard about King's assassination. Instead of the rousing campaign speech they expected, Kennedy offered brief, unrehearsed, impassioned remarks for peace that is considered to be one of the great public addresses of the modern era. If you're interested in reading more about the speech check this link:'s_speech_on_the_assassination_of_Martin_Luther_King,_Jr.

As we all know, shortly thereafter, this peace-loving member of a family that had recently suffered one assassination (JFK), was further burdened with another. In relatively short order three of the free world's visionaries were killed by guns. Not by disease or natural causes. By guns. I remember that time quite clearly. I was at a very impressionable age, having been in about the sixth or seventh grade. It felt as though the world was coming apart at the seams. Schools were closed, people didn't go to work. We were all glued to our television sets. I can't help but wonder what this nation would be like today if Robert Kennedy, Martin Luther King and John F. Kennedy were still kicking around. I don't believe that if ordinary citizens attending the events where these leaders were murdered had been carrying guns, that they could've intervened. The shootings happened too quickly, and in the case of JFK, the shooter(s) was in the sixth-floor window of the Texas School Book Depository Building. No one had a clue.

I believe the statistics make it clear: Guns don't kill people, people with guns kill people. People also kill themselves, unfortunately -- intentionally and accidentally -- when guns are handy. Let's sign petitions, write letters to our representatives, talk to one another and make a great deal of noise until something changes.

Bob Cowart

Stem Cells Reverse Disease in a Model of Parkinson's Disease

May 16, 2011 — A team of researchers -- led by Sang-Hun Lee, at Hanyang University, Republic of Korea, and Kwang-Soo Kim, at Harvard Medical School, Belmont, -- has now compared the ability of cells derived from different types of human stem cell to reverse disease in a rat model of Parkinson disease and identified a stem cell population that they believe could be clinically relevant.

Parkinson disease results from the progressive loss of a specific subpopulation of nerve cells. Current treatments provide only relief from the symptoms of the disease and cannot reverse the nerve cell loss. Stem cells are considered by many to be promising candidate sources of cells to reverse nerve cell loss in individuals with Parkinson disease through their ability to regenerate and repair diseased tissues.

There are two types of stem cell considered in this context: embryonic stem (ES) cells, which are derived from early embryos; and induced pluripotent stem (iPS) cells, which are derived by reprogramming cells of the body such that they have the ability to generate any cell type. In turn, cells of the body can be reprogrammed to become iPS cells in one of two ways: the reprogramming proteins can be transferred directly into the cells (protein-based iPS cells) or viruses can be used to deliver to the cells the genetic information necessary for producing the reprogramming proteins (virus-based iPS cell). Lee, Kim, and colleagues found several problems with cells derived from virus-based human iPS cells that precluded their use in the Parkinson disease model but found that nerve cells derived from protein-based human iPS cells reversed disease when transplanted into the brain of rats modeling Parkinson disease. They therefore conclude that protein-based human iPS cells could be used in the treatment of individuals with Parkinson disease.

Monday, January 21, 2013

Sunday, January 20, 2013

Promising new target for Parkinson's disease therapies

From Science Daily

Jan. 18, 2013 — With a new insight into a model of Parkinson's disease, researchers from the University of Pennsylvania School of Veterinary Medicine have identified a novel target for mitigating some of the disease's toll on the brain.

Narayan G. Avadhani, Harriet Ellison Woodward Professor of Biochemistry and chair of the Department of Animal Biology at Penn Vet, was the senior author on the research. Other department members contributing to the work included Prachi Bajpai, Michelle C. Sangar, Shilpee Singh, Weigang Tang, Seema Bansal and Ji-Kang Fang. Co-authors from Vanderbilt University are Goutam Chowdhury, Qian Cheng, Martha V. Martin and F. Peter Guengerich.

Read the rest of the story...

Wednesday, January 16, 2013

A free Lyme culture test? Ask your doctor today

A free Lyme culture test? Ask your doctor today

8th January 2013

lab test pic

Working through your doctor, you may be able to get a free Borrelia culture test as part of a research program.

Note: Since I posted this blog yesterday, Advanced Labs has been inundated with phone calls from patients seeking this test. The lab doesn't have the staff to field such phone calls, and it's creating a huge problem. As stated in my original blog, only DOCTORS can order the test. Print out the information below and fax it to your doctor. The entire Lyme community stands to benefit from the successful development of this test. Please, let these folks do their work!

Advanced Laboratory Services, Inc, became famous in the Lyme community for developing a revolutionary Lyme culture test. Most lab tests for Lyme don't look for Lyme itself, but rather antibodies to Lyme–which can sometimes be problematic.  A culture test grows the Lyme bacteria from the blood sample. Unfortunately, the current culture test costs about $600 and can take up to four months to get results.

Now, Advanced Labs is working on a second generation culture test, with an eye towards developing a less expensive one that gives quicker results.

Dr. Joseph Burrascano, who consults with Advanced Labs, this week sent out a letter to doctors informing them about the development of the new test. In the letter, Burrascano states, "The lab needs blood samples from Lyme patients who are actively ill, have a very high likelihood on clinical grounds to have Lyme (do NOT have to be CDC-positive for this particular study), but must not have been exposed to any antibiotics over the prior four weeks. Can be early or late Lyme- not important as long as you are confident in the diagnosis and the patient has signs that the infection is active. If you have any potential candidates, please let me know." (Note: Also, no herbal antimicrobials.)

According to Burrascano's letter, the lab will do the full culture free of charge. All samples will be cultured and then tested by immunostains. Select samples may also be tested by PCR and DNA sequencing.

Physicians who want to participate should contact Advanced Labs for special blood collection kits that the company will mail to the doctor's office. There are very specific instructions that must be followed for collecting and shipping the samples. Also, patients must sign a consent form.

Because of state laws, the lab cannot accept samples from New York practitioners.

This is a good opportunity for certain Lyme patients to get their blood tested for free and also to help advance the development of a significant new test. I've already gotten lots of emails from patients asking how they can get the test kits, so I emphasize that it must be done through a doctor and only if you meet certain requirements.

You might print this column and show it to your doctor, asking if you'd qualify for the test. Then, the doctor must contact Advanced Labs for further instructions.

From Advanced Laboratory Services:
Regular collection kits can be ordered by practitioners online by clicking on "Order Kits" (tab at top right). Click here for website.  Research kits will only be sent after a practitioner has registered with the lab and each patient has been pre-qualified – there is a form that the lab will provide to interested practitioners.  Practitioners can email the lab at

TOUCHED BY LYME is written by Dorothy Kupcha Leland,'s VP for Education and Outreach. Contact her at


Wednesday, January 9, 2013

Hearing Loss, Tinnitus, Possible drug prevention

Here's an interesting article about hearing loss -- what causes it, and a drug that is being studied as a potential hearing protection for those in noisy occupations. The topic of hearing loss and tinnitus have been of interest to me because some of the drugs I use for Lyme disease treatment, such as azithromycin, can actually cause hearing loss. I used to play in rock and jazz bands pretty regularly back in the 80s (well actually in the 60s 70s and 80s --ack! I'm dating myself), I always tried to protect my ears. But even with all of my diligence, I have tinnitus pretty badly. it's quite a bummer. I hear ringing in my ears 24/7. In my case, it is so loud that I can hear it even when I'm driving a car on the freeway. So, I could be going 60 or 70 miles an hour and the noise in my head is louder than the noise outside.

By the way, this article is on Dr. Perlmutter's blog site. Perlmutter is an M.D. who has claimed that Hyperbaric oxygen treatment (HBOT) can help with Parkinson's disease. I used his protocol when I did my hyperbaric oxygen treatments. Unfortunately, I did not see a reduction in my parkinsonism.

Monday, January 7, 2013

Funds available to assist with lyme and co-infection testing

Just a reminder that Lyme-TAP has funds available to help out with the cost of testing for Lyme and co-infections for both adults and children.

They will cover up to 75% of allowable testing, either via reimbursement (you pay for the tests, then get money back), or via prepayment (they write a check payable to the lab that you're using). 


Wednesday, January 2, 2013

Protomyxzoa treatment

Some docs seems to feel that one of the main infections contributing to chronic Lyme are parasites, and possibly fungus.  Below are some notes from the 'better health guy,' Scott Forsgren, about this. Some LLMDs are treating this newly-popularized bug, called fl1953 protomyxzoa rheumatica.  Different docs seem to treat differently. In late 2012 I tested positive for this bug, via a blood test conducted at Fry Labs. You can read more about some treatment ideas.

Scroll down to the section about Ann Corson's talk:

Protomyxzoa rheumatica is a huge player in her patient population.  It is not yet know if it is found in ticks, but it has been found in mosquitoes by Dr. Fry in Arizona. There are three references on that page. Search for the word in your browser ("find on this page", typically brought up using Ctrl-F or Option-F) or just read the section next to the photo of Ann on that page.