Friday, June 14, 2013

Issues of Concern for Lyme Patients and the General Public

This is an exposé published in the Poughkeepsie Journal addressing the issues chronic Lyme disease (CLD) patients as well as the general public are facing:

underreporting
problems with patient care
treating co-infections
lack of screening for babesia in the blood banks


This reporter is very bright, she gets it, she writes well, and is willing to do more. She spoke with Pat Smith, Drs. Fallon, Horowitz, Liegner, Pam Weintraub, Congressman Gibson, Assemblyman Miller and many others including Baker and Wormser.

All you have to do is look at the video, and read her stories below to
see how clever she is at exposing the problems with the "system".

1. Video Interview of Chronic Lyme Patients
http://www.poughkeepsiejournal.com/videonetwork/1791355261001?odyssey=mod|tvideo2|article


2. Exposé About the Seriousness and Underreporting in NYS as started in
CT and spread to WI - Where next?

http://www.poughkeepsiejournal.com/article/20120817/NEWS01/308170039?source=nletter-top5

3. About the seriousness of Babesia
http://www.poughkeepsiejournal.com/article/20120817/NEWS01/308170049/New-tick-borne-threat-emerges?odyssey=mod|mostview



FDA Comes to Grips with Fecal Transplants


Efforts are under way to standardize fecal transplants, which helps re-establish healthy microbe populations in the guts of patients

By Beth Mole and Nature magazine

The brown slurry is piped through tubes into the top of the human body — or the bottom. It can even come in pill form. For years, doctors have been transferring feces into ill people’s intestines to replace resident microbes with a fresh batch. The procedure is often a therapeutic success, but protocols for it vary wildly. As it steadily grows more popular, regulators are now working to define what a standard fecal transplant should be, and how to deliver one safely.

Read the rest of the story:
http://www.scientificamerican.com/article.cfm?id=fda-comes-to-grips-with-fecal-transplants


- Posted using BlogPress from my iPad

Sunday, June 9, 2013

Personal update 5-23-13

Here's my personal update for the day. It's kind of a downer. But it's the best I can muster, and it's honest.

http://www.youtube.com/watch?v=VPPec1zup9w

There is a lot I didn't say that is some background. For example, earlier in the month I was in the hospital because it looked as though my port was infected. The first we did a blood culture from two locations -- the port and then a peripheral vein. The vein came back negative the the port came back positive, for Staphylococcus aureus.

Then the surgeon looked at the port that he himself had installed in my chest, and his opinion was that it should come out. The reasoning is that if the port was infected it could have infected the heart, and it could mess up a heart valve. That would require heart surgery to replace a bad valve. So he removed it and sowed me back up.

Now that the port was out of the picture, we did another culture and found that the bacteria had moved into the circulatory system in general. So that meant I had a legitimate case of sepsis. Not good. Once you have bacteria in your blood then infection can go anywhere, and set up camp. Luckily the infection did not have resistance to all antibiotics. It was sensitive to three different ones. That means, that it could be killed off by at least three kinds of antibiotics that are easily available. The doctor chose to put me on vancomycin. I was in the hospital for three days on a steady drip of that.

My stay in the hospital was generally traumatic. I was quarantined in my room, not allowed to walk around the hospital. People were not to touch me, while we waited for the results from the lab. That was because they were concerned that I might have MRSA (Methicillin Resistant Staphylococcus Aureus). I was concerned about that possibility, of course. How ironic would it be to have been treating bacteria all these years (almost 10 years), only to get an incidental infection in a port that could've killed me.

I know that these kinds of unexpected complications that can result from having a "central line" for long-term treatment of Lyme disease gave me pause for thought before I decided to get one. But weighing the pluses and minuses of having a port, considering that I would be embarking on maybe a multi – year regimen of daily IVs, the plusses prevailed. There's always the chance that a central line can become infected. However, I was long overdue for heavy-duty antibiotic treatment, having been messing around with oral antibiotics and supplements for close to five years already, and showing little improvement. In fact I was continuing to decline.

Then also, there is the argument by the conservative medical establishment that doing antibiotics for that long can cause Lyme patients' bodies to become more resistant to antibiotics. The argument goes — and it's a reasonable argument — that bacteria of all kinds are very intelligent, and can change their molecular structure in order to survive the onslaught of high quantities and and/or long durations of IV antibiotics. This is especially true of the bacterium responsible for Lyme disease (Borellia). This bacterium has many more genes than does the syphilis bacteria, and we know that syphilis is a mighty adversary. Also, like syphilis, Borrelia is a "great imitator." Estimates are that it can cause a human body to develop symptoms that appear clinically like more than 200 different diseases that have nothing to do with Lyme disease, per se. But, I digress.

Why should doctors who are worried about the development of resistant strains of bacteria pick on Lyme patients and their doctors? There are other examples of syndromes and diseases for which doctors prescribe long-term use of antibiotics. Teenagers with acne and folks with diabetic wounds that won't heal are two good examples. My understanding is that the conservative medical establishment does not call those doctors before a medical review board, put them on probation, or take away their license to practice.

What I have read is that the biggest culprit in the development of resistant strains of bacteria (sometimes called "super bugs") is the policy of blanket administration of antibiotics to livestock, such as cattle. The argument goes that when we ingest the meat, we also are "taking" the antibiotics. We also drink the water that comes out of the water table that the antibiotics have seeped down into, from these highly potent cattleyards. So we humans are ingesting antibiotics just as if we were taking pills prescribed by a doctor. Collectively, bacteria that are just sitting around in our bodies are actively adapting themselves to live in this new environment of basically antibiotic soup anyway. Why deprive people who are terribly sick, and often have been sick for many years, a pass on this particular issue? Could it be that insurance companies don't want to pay for the high cost of antibiotic therapy for its customers who have been diagnosed with Lyme disease? If we want to get serious about reducing the development of superbugs, why not look at much larger contributors to the problem, such as the ubiquitous use of anti-microbial hand cleaners (those antibiotics go straight into the water treatment plants and often come back to us in the form of drinking water), and the overuse of antibiotics for farm raised animals (including farm-raised fish)?

A free online movie about Lyme disease

Here's a flick I didn't know existed. It's about a half hour long about a skier, a young woman who was struck down by Lyme disease and how she recovered with the help of a Lyme doctor on the East Coast, Dr. Cameron, from Mount Kisco, New York.

Angeli VanLaanen is a freestyle skiier from Bellingham Washington who after being sidelined with Lyme disease now has plans of competing in the Sochi 2014 Winter Olympics. She never got real sick, but it's still good. 

Angeli made a very inspirational documentary about her life and Lyme disease that can be watched online: http://vimeo.com/65479794



Obamacare Explained: A Guide for Californians

From KQED Public Media for Northern CA

Starting January 1, 2014, most Americans will be required to have health insurance or pay a fine. It's part of President Obama's Affordable Care Act. Whether you love it, hate it or are just plain confused, the ACA is the law of the land. The thousand-page law covers a lot of ground and figuring out what part of it has to do with you can be a challenge.
Don't panic.
Read the site!

http://www.kqed.org/news/health/obamacare/obamacare-guide.jsp

Ozone therapy & Parkinsons

This sounds like a promising approach. I had not heard about this before, at least not specific to Parkinson's treatments.

http://www.o3center.org/ConditionsCenter/MusculoSkeletalSystems/OzoneandParkinsons.html

If you know anything about this, please post a comment in response to this post.

Sunday, June 2, 2013

Hepatitis A from Costco Frozen Berries?

Health officials have linked frozen berries from a Fairview producer sold in Costco (http://www.costco.com/) to a hepatitis A outbreak in five states.

At least 30 people have become ill since April 29, according to statements Friday from state and federal officials. The cases are spread among Arizona, California, Colorado, Nevada and New Mexico. No patients have been identified in Oregon.

Food safety sleuths traced the outbreak to frozen berries produced by Townsend Farms in Fairview. The Food and Drug Administration said that 11 of 17 people interviewed so far consumed Townsend Farms (http://www.townsendfarms.com/)Organic Anti-Oxidant Blend, which contains cherries, blueberries, pomegranate seeds,

(http://projects.oregonlive.com/recalls/food/)

Keep up with recalls, food safety news (http://projects.oregonlive.co

report)

The Oregonian's database of food recall news and updated federal warnings about food safety.

Recall news, warnings » (http://projects.oregonlive.com/recalls/food/)


Friday, May 31, 2013

Saturday, May 4, 2013

Procedure Could Help Local Patients Beat Parkinson's Disease

Researchers hope a procedure using patients' own stem cells will cure Parkinson's Disease, or at least eliminate symptoms for decades.

Eight patients have joined the project at Scripps Research Institute in La Jolla to take part in the initial trial. Before they are able to proceed, they must get funding and obtain approval from the Food and Drug Administration.

"We're all treading water until the funds can be found and the hoops that the FDA give us can be jumped through," said Cassandra Peters, who was a paralegal at a law firm until 2005, when the symptoms of Parkinson's made it too difficult to work. She was diagnosed at age 44, 13 years ago.

See the rest of the story:

http://www.nbcsandiego.com/news/local/Procedure-Could-Help-Local-Patients-Beat-Parkinsons-Disease-206060501.html#ixzz2SNBYDFN2


Friday, May 3, 2013

Sergey Brin's search for Parkinson's cure (Wired UK)

Very interesting discussion of a new research method that is evolving due to the power of the Internet. It's kind of like crowdsourcing. They begin with a very huge data set or sample set, and then try to weed out the noise and look for correlations. I think this will revolutionize scientific research. This is the guy (cofounder of Google) who started 23andMe after he found out that he has the gene for Parkinson's, LRRK2.

--Bob