Friday, June 21, 2013

Taking back the Lyme research agenda, one project at a time

TOUCHED BY LYME: Taking back the Lyme research agenda, one project at a time
13th June 2013

How the Lyme community stepped up--with donations big and small--to buy a sophisticated microscope and support the groundbreaking research of Dr. Eva Sapi. (Pssst: still time to donate!)

More than 20 years of government-funded Lyme disease research hasn’t brought us any closer to a cure. Basically, the same folks who created the IDSA Lyme guidelines–which systematically deny care to thousands of Lyme patients every year–also have a lock on government-funded Lyme research money. This results in dead-end projects that waste time and money and do nothing to help suffering Lyme patients.

That’s why we support the trailblazing Lyme research of Dr. Eva Sapi, of the University of New Haven. She has made great strides towards solving the puzzle of Lyme disease—developing new culture techniques, investigating how antibiotics affect all forms of the Lyme bacteria, and examining the role of biofilms in Lyme. She is committed to finding out why the Lyme bacteria can persist in the face of antibiotic treatment, which is critical to finding a cure.

A few months ago, we found out she needed a new piece of equipment–an atomic force microscope–to take her research to the next level. This sophisticated instrument can magnify the Lyme spirochete 1000 times more than standard microscopes, allowing her to observe many live forms of Borrelia under many different conditions.

One of these babies costs about $110,000. We contacted some of our donors privately, asking if they wanted to help out. Some generous people answered that call, and by April,  we needed only $20,000 more to complete the purchase.

On May 1, in honor of Lyme Awareness Month, we launched a fundraising page, asking members of the Lyme community to help us close the gap and buy the microscope. Via donations big and small, the needed $20,000 was raised in three days!

Since people still wanted to donate, we pledged that all additional funds raised via that page will go towards Dr. Sapi’s first research project with the new microscope, aimed at unlocking the secrets of Lyme biofilms. More people donated, bringing the current amount raised on the page to more than $30,000.

You guys are great!

The fundraising page will be active until the end of June. I repeat, after the purchase of the microscope, all additional money raised via this channel will go to support Dr. Sapi’s research.

Think we can hit $40,000?

Click here to go to the fundraising page.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.


Monday, June 17, 2013

IVIG for Peripheral Neuropathy

I saw this note on the California Lyme listserv today:
 
A listserv member brought this to the attention of the group today. 
Intravenous immunoglobulin therapy helped all of the lyme patients with neuropathy 
after 6 months of one treatment per month. You may be put off by the 
starting premise of the study -- that their symptoms were part of post-lyme 
treatment syndrome -- but the conclusion seemed to be that they still had Lyme or 
would not have benefited from the IVIG therapy. 


Source: DGNews 
Immunoglobulin Therapy Effective for Neuropathy in Patients With 
Post-Treatment Lyme Syndrome
Presented at AAN


By Andrew Wilner, MD

SEATTLE, Wash -- May 2, 2009 -- Intravenous immunoglobulin (IVIG) therapy 
may improve neuropathic symptoms in patients with post-treatment Lyme 
syndrome, researchers stated here on April 28 at the American Academy of 
Neurology (AAN) 61st Annual Meeting.

A significant number of patients who had Lyme disease will continue to 
have lingering symptoms referred to as post-treatment Lyme syndrome, 
according to presenter Amiram Katz, MD, Lambert Professional Center, Orange, 
Connecticut. Similar symptoms are seen in patients who have received the Lymerix 
vaccine.

The study included 30 patients seen by Dr. Katz (13 females, 17 males; 
mean age 48.2 years) who complained of neuropathic pain.

Of the patients, 22 had a history of Lyme disease and 8 patients had 
received the Lymerix vaccine. All patients had antibodies to outer surface 
protein A (anti-OspA) and persistent symptoms despite at least 1 course of 
antibiotics.

Twenty-four patients had electrodiagnostic studies, but there was a poor 
correlation between electrodiagnostic and nerve biopsy results.

Four patients with abnormal electrodiagnostic studies had normal epidermal 
nerve fibre density on nerve biopsy, while 10 patients with normal 
electrodiagnostic studies had abnormal epidermal nerve fibre density on nerve 
biopsy. Three patients had inflammatory changes around the nerve endings on 
skin biopsy.

All patients were treated with IVIG 2 g/kg per month for at least 6 months.

After IVIG treatment, all patients had improvement of their neurological 
examination with respect to their sensation, Achilles reflex, and Romberg 
test. Several patients also showed improvement in the number of nerve fibres 
on repeat nerve biopsy after treatment. There was no placebo group.

"The diagnosis of chronic Lyme disease is not widely accepted, yet these 
patients have symptoms and nerve biopsies that respond to IVIG treatment, 
legitimising their complaints," concluded Dr. Katz.

[Presentation title: Diminished Epidermal Nerve Fiber Density in Patients 
With Antibodies to Outer Surface Protein A (OspA) of B. burgdorferi 
Improves with Intravenous Immunoglobulin Therapy. Abstract P02.021]

Friday, June 14, 2013

Lots of articles on Lyme research

Here's good reading for a week!

http://www.sciencedaily.com/search/?keyword=lyme

Type in any keyword for other research on illnesses.

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/)