Tuesday, December 20, 2011

TED TALK on Non-Invasive Surgery with Ultrasound for PD

This is an amazing talk and slide show at TED Med about a new means of treating Parkinson's disease.

Parkinson's and Presticides - New Research

Here's a pretty in-depth article about farming with pesticides and the effects it has on farm workers and others (such as neighbors) who are exposed to those pesticides. 


Tuesday, December 13, 2011

Bonnie Bassler: The Secret, Social Lives of Bacteria


A very interesting TED talk about how bacteria talk to each other, and what the next wave of antibiotics might be based on.

http://www.youtube.com/watch?v=TVfmUfr8VPA

Monday, December 12, 2011

TED Video about Coinfections and Antibiotics

A TED video of Bonnie Bassler's articulate explanation of why coinfections are so difficult to eradicate with antibiotics:

Financial Support for Lyme Medications

TOUCHED BY LYME: A program that can help you pay for Lyme treatment. Prescription Hope offers a way for patients with financial hardship to obtain low-cost prescription medications.

Click here:

http://www.lymedisease.org/news/touchedbylyme/prescription_hope.html

Why Are Coinfections So Hard to Beat?

Very informative article as to why Lyme + co-infections are so difficult to eradicate due to bacteria's biofilm ability to "communicate" as a colony.

Biofilm Research Shows Co-Infection Challenge for Chronic Lyme Disease 
(From Jenna's Lyme Blog)

Thursday, December 1, 2011

Blood Test for Early Parkinson's Disease

UK researchers say they have developed a simple blood test to detect Parkinson's disease even at the earliest stages. The test detects a substance in the blood indicative of Parkinson's well before physical symptoms appear.

Read full story:

Tuesday, November 29, 2011

Herbs, Hormones, and Heavy Metals

Here's a 53-page PowerPoint presentation by Dr. Richard Horowitz about Lyme treatments, detox, metals, efficacy of herbal treatments, and treatment of hormone imbalances. This is a PDF file on the ILADS site.
http://www.ilads.org/files/compendium07/Horowitz.pdf

Diagnosis and treatment of Babesia & other coinfections

Good articles on Cowden protocol and alternative Lyme treatments.
http://www.lyme-disease-research-database.com/lyme_disease_blog.html

Wednesday, November 23, 2011

Herbs helpful for Lyme

From a Lyme Yahoo group:

Similax/Sarsasparilla - binds to neurotoxins, neuroprotection

Japanese Knotweed - for neurotoxins, has high resveratrol content, crosses the blood brain barrier, anti-inflamnatory, neuroprotective, protects liver from toxins, stimulates micro-circulation

Stephani root - anti-inflammnatory, as good as corticosterioids

Ginko biloba - for brain hypoperfusion

Red Root - to clear cellular debri (I use to help clear out Babesia carnage)

Burdock - system cleanser, eliminates toxins

Andrographis(warning: don't take if have Chronic Lyme) - anti-toxin, alleviates pain, nerve pain, chronic inflammation

cats claw - anti-inflamnatory, immune modulator, protects the heart, general tonic, boosts CD-57 white blood cells

artemisia - crosses blood brain barrier, anti-inflammatory (caution: I read something about it being bad for CFS, but many have success with it for babesia)

Wednesday, November 16, 2011

Novel Stem Cell Technique in Pre-Clinical Models of Parkinson's Disease

On Sunday, November 6, Lorenz Studer, MD, director of the Sloan Kettering Institute (SKI) for Stem Cell Biology, published a paper in the journal Nature on a new strategy for using embryonic stem (ES) cells to graft human dopamine neurons into pre-clinical models of Parkinson’s disease (PD). Historically, ES cells have shown promise for treating PD in a Petri dish, they have not yet been effective once transplanted into a living organism. Dr. Studer’s new technique, however, has revealed new promise in models of PD, reflecting the potential for dopamine cells’ survival and function in the brain.

See full story:

http://www.michaeljfox.org/living_viewpoints_newsInContext_article.cfm?ID=37

Monday, November 7, 2011

Borelia Blood Culture Now Available for Clinicians


Advanced Laboratory Services is pleased to announce that the Borrelia Blood Culture is now available for clinical use in 48 states so far. We have already been accepting samples and reporting results! Read more:

http://www.lymedisease.org/news/lyme_disease_views/culturetest.html

One west-coast LLMD says it looks good but needs more testing to make sure Bb is what they are culturing, not other kinds of spirochetes. However, it seems to be gaining in popularity. I will be getting this culture test in a month or so and will post about it when I do.

Success and setbacks in embryonic stem cell research for PD


Success and setbacks in embryonic stem cell research 
Source: medcitynews.com

Current medical news from today, including embryonic stem cell research for PD
 

Friday, October 14, 2011

What Parkinson's Teaches Us about the Brain

Check out this article in NY Times, about exercise and PD.


Sort of a paradox for Lyme patients because aerobic exercise often makes Lymies feel worse. My Lyme docs have warned against aerobic exercise, saying it's better to concentrate on weight-bearing exercise. After aerobics I do feel much worse, sometimes for two days. But I think I'm going to give some bike riding a whirl. 

Wednesday, October 12, 2011

Exercise & PD

Exercise and Parkinson's disease:

PD Vaccine Shows Hope

Here's a news story about a potential vaccine for Parkinson's disease. The vaccine prevents the build-up of fibrous tangles called lewey bodies in the brains of PD and Alzheimers patients. There may be application for Lyme patients too, considering that reseacher Alan McDonald found Borrellia spirochetes in 7 of 10 post-mortem Alzheimer's brains he examined, which suggests that there may be a connection between Bb and lewey body formation. 

Wednesday, October 5, 2011

High Risk Medical Insurance

I believe this is the direct link to the California High Risk Medical Insurance program. Some Lymeies have had good results here:

http://www.mrmib.ca.gov/mrmib/mrmip.shtml

Friday, September 30, 2011

New PD drug research leads to human trials

From Michael J. Fox Foundation newsletter:
http://www.michaeljfox.org/newsEvents_mjffInTheNews_pressReleases_article.cfm?ID=510




Vanderbilt-MJFF Partnership Yields Drug-Like Molecules Aimed at Improving Treatment of Parkinson's Disease

Researchers at Vanderbilt University Medical Center have achieved a milestone in the development of a potential new treatment for Parkinson’s disease that may improve on some of the limitations of current therapy.
Three drug-like molecules that act on a specific glutamate receptor in the brain are ready for the next stage of preclinical testing prior to entering human trials. The molecules were developed with major support from The Michael J. Fox Foundation for Parkinson’s Research (MJFF).

If all goes well in final preclinical testing, the molecules could be ready for clinical testing as soon as 2013, says Jeffrey Conn, Ph.D., director of the Vanderbilt Center for Neuroscience Drug Discovery. “We are very excited to reach this major milestone and are eager to fully understand the extent of benefit that this new treatment strategy will have in patients suffering from Parkinson’s disease,” Conn said.

“Our Foundation is committed to advancing improved symptomatic therapies that could dramatically increase patients’ quality of life,” said MJFF CEO Todd Sherer, Ph.D. “The emergence of successful drug candidates from our partnership … points to the viability of a new model for drug development, one in which academic teams collaborating with forward-thinking funding partners can help keep the pipeline flowing with promising new agents.”

New models are urgently needed as pharmaceutical companies increasingly struggle to recoup their research investments in the development of new treatments. It can cost over a billion dollars to bring a drug to market. Some pharma firms already are downsizing their research operations as patent protection ends for some of their best-selling brand name products. Cuts in health care reimbursement for medications could bring even more financial challenges for the drugmakers.

Parkinson’s disease and the shortcomings of current treatments
An estimated 1 million Americans have Parkinson's disease, a progressive brain disorder characterized by resting tremor, rigidity and slowness of movement, as well as a battery of non-motor symptoms. It is caused by the death of nerve cells in a specific brain region that produce the neurotransmitter dopamine.

Dopamine replacement therapy, today’s gold standard treatment for Parkinson’s, relieves some motor symptoms of the disease, but over time it causes debilitating side effects such as involuntary, uncontrollable movements (dyskinesia). It is believed that dyskinesia is caused at least in part by the ebb and flow of dopamine levels in the brains of those receiving dopamine replacement therapy. Current Parkinson’s treatments also provide less and less benefit to patients as the disease worsens over the long term.
The new Vanderbilt compounds work in a fundamentally different way from dopamine replacement therapy, by bypassing the dopamine system altogether and instead modulating another of the brain’s neurotransmitters, glutamate. Conn and his colleagues have been working to activate a specific glutamate receptor called mGlu4.

The compounds are known as “positive allosteric modulators,” or PAMs. To increase mGluR4 activity while minimizing the likelihood of adverse effects, Conn’s team has taken a subtle approach to manipulating the mGluR4 receptor. “You can liken it to a dimmer switch on a light in your home, where you can turn up the gain of the receptor and its activity, or turn it down, without completely activating it or shutting it off,” Conn explained in a 2009 interview.

In their latest findings, the Vanderbilt researchers describe three PAMs that, when given systemically in a preclinical model of Parkinson’s disease, reach the brain and relieve motor symptoms, including rigidity and akinesia (a “freezing” of certain motor muscles).

NIH support

Conn’s colleagues in this effort include Craig Lindsley, Ph.D., co-director of the Center for Neuroscience Drug Discovery and Director of Medicinal Chemistry; Carrie Jones, Ph.D., the center’s director of Behavioral Pharmacology; Colleen Niswender, Ph.D., director of Molecular Pharmacology; J. Scott Daniels, Ph.D., director of Drug Metabolism and Pharmacokinetics; and Corey Hopkins, Ph.D., research assistant professor of Pharmacology and Chemistry.

Their work has been supported since 2007 by more than $4 million, largely awarded under MJFF’s LEAPS (Linked Efforts to Accelerate Parkinson's Solutions) initiative, which assembles teams of researchers with the various expertise required to bring a particular project to fruition, and to do so in as efficient and streamlined a way as possible. Conn’s speedy results are an example of a successful LEAPS project in action.

Conn’s work on Parkinson’s disease actually began in the 1990s when he was at Emory University. That research was conducted as part of a Morris K. Udall Center of Excellence in Parkinson's Disease Research supported by the National Institute of Neurological Disorders and Stroke (NINDS).
In 2010, he and his colleagues began a partnership with a new NINDS Udall Center at Emory to explore additional allosteric modulators as potential treatments for Parkinson’s disease.

"A primary goal of the NINDS Udall Centers program is to foster translation of research observations into improved treatments for Parkinson’s disease,” said Beth-Anne Sieber, Ph.D., a program director at NINDS. “We are pleased to support Dr. Conn’s discovery efforts as part of this program.”
The Vanderbilt-Fox Foundation partnership is an example of how academic medical centers are helping to fill the “drug pipeline” with new agents that potentially will dramatically improve the health of millions of patients worldwide.

Sunday, September 25, 2011

Sinemet causing nausea

I took two Sinemet tablets today, along with Ardane. Those are for my PD symptoms. Then I took some Rx pain killers for the disk problems in my upper back. Mid-day I had excellent control of my hands for piano practicing. Not perfect, but much better than usual. I could play trills and turnarounds for the first time in years. I could not play quickly-repeating, rhythmic chords such as in the Chopin 'Military Poloniase', unfortunately. Still, the control and facility I did have was exhilarating and fun! I played for a couple of hours. It's nice to know that the nerves and muscles are still hooked up. I guess it's just the neurotransmitters that are missing, or are in short supply. It's such a weird disease. Whether it's PD or Lyme, it's really crazy makung and frustrating.

Later on, around 9PM, I started feeling shaky again, so I took another Sinemet. It was on a fairly empty stomach. I felt pretty immediately nauseated, within the hour. Hot flashes, low body temp (95.2), dizzy. An hour later it passed, after eating some chicken. I suspect it was the sinemet, but it sure felt funky.

Saturday, September 24, 2011

Personal video update

First video posting from iPad 2:
http://www.youtube.com/watch?v=1AO78VbenOE
Bob

Using Bone Marrow to Protect the Brain

Using Bone Marrow to Protect the Brain: Stem Cell Technology Begins Clinical Trial for Lou Gehrig's Disease

ScienceDaily (Sep. 21, 2011) — The ability to produce neuroprotectors, proteins that protect the human brain against neurodegenerative disorders such as Parkinson's and ALS, is the holy grail of brain research. A technology developed at Tel Aviv University does just that, and it's now out of the lab and in hospitals to begin clinical trials with patients suffering from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

See article
http://www.sciencedaily.com/releases/2011/09/110920080351.htm

Tuesday, September 20, 2011

Virus destroys Parkinson's symptoms

Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, and often starts with a barely noticeable tremor in one hand. While tremors may be the most well-known sign of Parkinson's disease, the disorder also commonly causes a slowing or freezing of movement...

Read article here:

http://austin.ynn.com/content/health/280432/your-health--virus-destroys-parkinson-s-symptoms

Friday, September 16, 2011

Researchers Find New Bacterium Causing Tickborne Illness Ehrlichiosis in Wisconsin, Minnesota

August 4, 2011

A new tickborne bacterium infecting humans with ehrlichiosis has been discovered in Wisconsin and Minnesota. It was identified as a new strain of bacteria through DNA testing conducted at Mayo Clinic. The findings appear in the Aug. 4 edition of the New England Journal of Medicine.

Doctors at Mayo Clinic, the Centers for Disease Control and Prevention (CDC), the University of Minnesota, the University of Wisconsin, and state and local health departments say the new species from the Ehrlichia genus can cause a feverish illness in humans. The new bacterium, not yet named, has been identified in more than 25 people and found in black-legged ticks, also known as deer ticks (Ixodes scapularis), in Minnesota and Wisconsin. Researchers used culture and genetic analyses.

“Before this report, human ehrlichiosis was thought to be very rare or absent in Minnesota and Wisconsin,” says Bobbi Pritt, MD, a Mayo Clinic microbiologist and director of the Clinical Parasitology and Virology Laboratories who helped coordinate the multi-agency team. “Therefore, physicians might not know to look for Ehrlichia infections at all.”

Ehrlichia infect and kill white blood cells and may cause fever, body aches, headache and fatigue. More severe disease may involve multiple organs such as the lungs, kidneys and brain and require hospitalization. Ehrliochosis rarely results in death.

All four patients described in the New England Journal of Medicine article suffered fever and fatigue. One patient, who had already received a bilateral lung transplant, was hospitalized briefly for his illness. All four patients recovered following antibiotic treatment with doxycycline, the drug of choice for treating ehrlichiosis. Although more than 25 cases have been identified, many more have likely been missed or unreported, Pritt says.

The investigation began after Carol Werner, then a technologist at Mayo Clinic Health System’s Eau Claire hospital, noted an abnormal Ehrlichia Polymerace Chain Reaction (PCR) result in 2009 and raised the first red flag. Mayo Clinic then began investigating with the CDC, the universities and several public health departments. The Minnesota Department of Health last year put out a health advisory alerting people that it and its Wisconsin counterpart were seeing increasing reports of ehrlichiosis in humans.

“As the deer tick population continues to spread and increase across Wisconsin, we are likely to see increasing incidence of this new infection, just as we have seen with Lyme disease and anaplasmosis which are transmitted by the same tick species,’’ says co-author Susan Paskewitz, PhD, an entomologist at the University of Wisconsin-Madison.

To date, thousands of blood samples from across the United States have been screened by Mayo Clinic laboratory technologists, and the bacterium has been detected only in specimens collected from Wisconsin and Minnesota. Thousands of ticks across the country have also been analyzed, and only those from the two states have been carriers.

Because the bacterium is likely transmitted through the bite of an infected tick, Pritt cautions that people should apply insect repellent and wear pants and long-sleeved shirts when active outdoors.

Doctors need to know to test for ehrlichiosis in the two states so the diagnosis is not missed. However, traditional blood antibody tests may offer misleading results and fail to accurately identify the new species. A specific antibody test for the new bacterium has been developed by the CDC but isn’t widely available. Instead, a molecular blood test that detects DNA from the new Ehrlichia species is the preferred method for detecting this disease in symptomatic patients.

When testing for this new Ehrlichia species, physicians should also consider testing for other tickborne diseases, such as Lyme disease, babesiosis and anaplasmosis, all prevalent in Minnesota and Wisconsin, Pritt says.

Genetically, the new bacterium bears closest similarity to another species of Ehrlichia -- E. muris -- that infects small rodents and deer in Eastern Europe and Asia. E. muris rarely infects humans, and no cases have been reported in North America.

From: Infection Control Today

http://www.infectioncontroltoday.com/news/2011/08/researchers-find-new-bacterium-causing-tickborne-illness-ehrlichiosis-in-wisconsin-minnesota.aspx


Herpes Virus Linked to Alzheimer's

Laboratories at the University of New Mexico (UNM), Brown University, and House Ear Institute (HEI) have developed a new technique to observe herpes simplex virus type 1 (HSV1) infections growing inside cells. HSV1, the cause of the common cold sore, persists in a latent form inside nerve cells. Re-activation and growth of HSV1 infections contribute to cognitive decline associated with Alzheimer’s disease. Details are published in the March 31 issue of PLoS ONE magazine from the Public Library of Science.

"Herpes infects mucous membranes, such as the lip or eye, and generates viral particles," submits study principal investigator Elaine Bearer, MD, PhD, the Harvey Family Professor and vice chair for research, Department of Pathology, UNM School of Medicine. "These viral particles burst out of the cells of the mucous membrane and enter sensory nerve cells where they travel inside the nerve toward the brain. We now can see this cellular transportation system and watch how the newly formed virus engages cellular APP on its journey out of the cell."

Tagging herpes virus inside cells with green fluorescent protein, scientists used live confocal imaging to watch HSV1 particles emerge from infected cells. Newly produced viral particles exit the cell nucleus and then bud into cellular membranes containing amyloid precursor protein (APP). Electron microscopy at HEI detailed the ultrastructural relationship between HSV1 particles and APP.

This dance between viral particles and cellular APP results in changes in cellular architecture and the distribution of APP, the major component of senile plaques found in the brains of Alzheimer's disease patients. Results from this study indicate that most intracellular HSV1 particles undergo frequent, dynamic interplay with APP, which facilitates viral transport while interfering with normal APP transport and distribution. This dynamic interaction reveals a mechanism by which HSV1 infection leads to Alzheimer's disease.

In developed countries such as the U.S., approximately 20 percent of children are infected with HSV1 prior to the age of five. By the second and third decades of life, as much as 60 percent of the population is infected, and late-in-life infection rate reaches 85 percent.

Symptoms of primary HSV1 infection include painful blisters of the mouth, lips or eyes. After infection, HSV1 persists in nerve cells by becoming latent. Upon re-awakening, new viral particles are made in the neuron and then travel back out its pathways to re-infect the mucous membrane. Many infected people experience sporadic episodes of viral outbreaks as the well-known recurrent cold sore.

"Clinicians have seen a link between HSV1 infection and Alzheimer's disease in patients, so we wanted to investigate what might be going on in the body that would account for this," adds Dr. Shi-Bin Cheng, post-doctoral associate, Department of Pathology and Laboratory Medicine, Alpert Medical School, Brown University. "What we were able to see in the lab strongly suggests a causal link between HSV1 and Alzheimer's Disease."

"It’s no longer a matter of determining whether HSV1 is involved in cognitive decline, but rather how significant this involvement is," Bearer asserts. "We’ll need to investigate anti-viral drugs used for acute herpes treatment to determine their ability to slow or prevent cognitive decline."

Researchers recommend people treat a cold sore as quickly as possible to minimize the amount of time the virus is actively traveling through a person’s nervous system. The faster a cold sore is treated, the faster the HSV1 returns to a dormant stage.

From:
http://www.infectioncontroltoday.com/news/2011/04/researchers-link-herpes-to-alzheimers-disease.aspx



Researchers Say Local Antibiotic Therapy Stops Lyme Disease

Lyme disease is a dangerous disease which is transmitted by ticks. Blood-sucking ticks ingest the agents that cause the disease – bacteria of the species Borrelia burgdorferi and its relatives – during a blood meal, and subsequently transmit them to the next victim they feast on, often a person. It is estimated that, in Western Europe, up to half of all ticks carry the bacteria. Although the early symptoms of the illness are quite mild, if left untreated, it can result in serious damage to the skin, the joints, the heart and the nervous system, and effective therapy becomes very difficult.

A team of researchers led by the veterinary bacteriologist professor Reinhard Straubinger at Ludwig-Maximilians Universität (LMU) München has now shown, in an animal model, that application of a gel containing the antibiotic azithromycin to the site of the bite rapidly terminates the infection. The efficacy of this local antibiotic therapy for the treatment of borreliosis in humans is now being tested in a Phase III clinical trial. In the meantime, though, patients must still undergo antibiotic treatment for several weeks and, in many cases, the drug must be administered intravenously – which is distressing not only for children. Furthermore, treatment measures are often initiated on suspicion, because the bacteria are not detectable in the blood soon after one has been bitten by an infected tick.

"Our approach simply involves applying a transparent, self-adhesive plaster to the site of the wound," says Straubinger. "Because the plaster contains very little antibiotic, the effects are localized and side-effects are negligible."

Reference: Knauer J, et al. Evaluation of the preventive capacities of a topically applied azithromycin formulation against Lyme borreliosis in a murine model. Journal of Antimicrobial Chemotherapy online, Sept. 15, 2011.

Thursday, September 8, 2011

Book about handling chronic illness






A colleague of mine who is also dealing with chronic, painful and debilitating illness just gave me a reference that might be worth checking out:

Author: Toni Bernhard

Title: How to be sick: A Buddhist-inspired Guide for the Chronically Ill and Their Caregivers.

http://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264

Wednesday, September 7, 2011

Continuing to Lose Weight





Not sure why I'm down to 124. Possibly because shopping is difficult since the back pain and perhaps the antibiotics and/or Lyme have messed with my absorption. I started taking digestive enzymes a couple of weeks ago. Normal weight for me is 135-140.

Monday, September 5, 2011

Lyme study needs subjects

This email is to let you know about a Lyme Disease research project going on the the San Francisco Bay Area that needs more Lyme patients as participants. Many of our established members have already heard about this already, but we've had a lot of new people sign up recently who might be good candidates.

The study is being conducted by a health care practitioner who treats Lyme patients in the bay area. She's teamed up with some researchers at Stanford University to conduct a study examining the accuracy of various Lyme Disease tests. This is a Lyme-Literate and CALDA sponsored study. The results will benefit all Lyme patients.

To see if you qualify for the study and to sign up, please see the instructions on the study recruitment flyer, found in the files section of the LEAPS meetup website:

http://bit.ly/n9K

I recenly heard from the investigators they're almost done with the study, they just need a few more people, so please pass this on to everyone you know!

Friday, September 2, 2011

My latest commentary about computers. The Desktop is Dead.



Well, I've been using an iPhone and iPad most exclusively for my computing needs for the last six months or so. This is probably because I have been mostly incapable of sitting in the chair for any length of time due to the various symptoms. But it's also because I have become fond of these devices. I can take them wherever I want, whether walking around, lying down in bed or sitting in a comfy chair, etc. Makes computing so much easier.

In any case, tonight I had a project to do which consisted of consolidating a bunch of e-mails on my desktop iMac and creating a chart out of them in Microsoft Word. It should have been a very simple project. Should not be difficult, right? Well, it took me about two hours to do it. Unbelievable.

I had not used my new fancy iMac for about two weeks. I am running Parallels with Windows 7, running under OS X. The computer has been mostly in sleep mode over the past few weeks but it had been 'on' some of the time, so conceivably it could have updated itself and been ready to roll. In any case, I powered it up and sat down ready to do some quick work on it and get to bed at a timely hour. Whether it is the electronic goblins, the Muses who are working their wiles against me, or just a ridiculous state of complexity of microcomputers, I don't know, but the stark contrast to the ease with which iOS devices (the iPad in the iPhone) work became so obvious to me that I almost pulled my hair out and threw my computer, as brand-new and shiny as it is, out the window.

Now admittedly, I am dealing with a pinched nerve in my neck and it's giving me major back pain so I am not a particularly happy camper, and I have this incredible tremor from the Parkinson's disease or whatever. So I am not long on patience right now. But still, I am a clever guy, and I know how to get around computers and have written many books about them over the years. So usually I can just skin a cat one way or the other and do the 'computer whisperer' thing, and get stuff to work.

Suffice it to say I had about 20 dialog boxes come up over the course of the time I was working, maybe more. Did I want to update iTunes? How about security updates for OS X. Did I want to? Windows had some updates to do, too. Ad-Aware needed urgently to update. The computer slowed to a crawl a few times with the hard drive getting continuous disc hits, and the CPU pegged despite the fact that I was intentionally doing next to nothing. I had to close all the browser windows I had open and methodically shut down all kinds of stuff like the Apple Mail program and Outlook in order to get the CPU out of the gutter. I eventually just decided to shut down the Windows 7 virtual machine and Parallels, then reboot OS X. So, I had to reboot two operating systems which took another about 15 minutes to do. This was in part because various programs failed to shut down even though I told the operating systems to shut down. And it wasn't just Windows, it was also OS X, too. Mail would not shut down, for example, so I had to force quit it.

After rebooting, the scanner that I was trying to use with Paperport could not be found. In an hour's worth of trying to reconnect it through software and hardware tricks, I did not succeed. I tried another scanner. That didn't work either. Flash wanted to be updated, Java wanted to be updated. The NTFS driver that I have for Mac OS X so I can use my external hard drive timed out and needed to be repurchased. Many another dialog boxes and error messages, things not found, and so forth presented themselves from time to time.

Next, I realized how frustrating it is to actually work with the mouse. I have both a mouse and the magic trackpad connected to the iMac. But with the 27-inch screen on the iMac, getting from one corner to the other corner really takes some hand work. I had to close programs and aim at the little red X or the little red dot in the corner of the application window. Numerous times I missed. Or, I was trying to select a bunch of text and then had to right click on it or remember the right keyboard control sequence for a copy and paste, which happens to be different between Windows and OS X. So I was busy navigating between apps, with a lot of dexterity required. I overshot a few times and application documents disappeared, and so forth. You know, the usual.

Geeze, all I wanted to do was copy some text from some e-mails and put them in another e-mail or in a Word document so I can send it to somebody.

Once I saved the document, it went into some remote folder somewhere, so that I had to navigate to that. Then right click on it and choose Send to > Mail recipient, and then that opened up Word to create a new mail document, and then I had to navigate my recipient list, and so forth. Eventually after rooting around for a while, I got the e-mail sent. The entire endeavor took about two hours. It was excruciating.

I was just saying to a friend today that computers are like relationships: If you have too many of them around you're really asking for trouble. They all take maintenance. I suggest that if you are considering having more than one computer in your life, forget about it. Each one takes so much maintenance that it's not worth having more than one. And once you become familiar with one operating system or one set of applications or one interface or one keyboard or whatever, switching between them is too much mental overhead.

Desktop personal computers are just too damn complicated. Period. I was more than happy to get back to my iPad so I could dictate this rant. Sure, it takes several steps, dictating into Dragon, and double clicking the Home button to switch back and forth between that and BlogPress, but big deal. It's not too difficult, and it actually works.

As much as I hate the idea of having everything on 'the Cloud', and losing control over my data, where it is, who's looking at it, and losing control over my applications, I have to say that it's probably going to be a giant breakthrough when we no longer have to maintain, update, replace, repurchase, purchase new, or whatever all of our applications, all of the time. Updating our operating systems, our virus protection programs, our various other malware protection programs is a gigantic pain in the butt.

Viva le tablet and le Cloud!

Comments?

Sunday, August 28, 2011

International Criteria for Myalgic Encephalomyelitis

Many Lyme sufferers were first diagnosed with Chronic Fatigue Immune Dysfunction (CFIDS/CFS), now called Myalgic Encephalomyelitis (ME). Here is a link to the new International Criteria. It may help some people with their disability and Social Security claims.

http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyeli\
tis-international-consensus-criteria.pdf

Scroll to the bottom "Table 1" for the meat and potatoes. There is also an article about it in ProHealth.com library. When struggling with doctors who tune out at the mention of Lyme, this might be a way to get much needed help.

Saturday, August 27, 2011

New Lyme Testing Lab






There is a new Lab I've discovered in Lubbock Texas, called Spiro Stat. They've been around for two years and test for 35 different co-infections and their various species.

Pathogen Information:

The following organisms can be detected and identified using the test panels offered by Spiro Stat Technologies.


Anaplasma
phagocytophilum
Borrelia afzelii
Babesia microti
Bartonella henselae
Borrelia burgdorferi
Borrelia garinii
Borrelia hermsii
Borrelia lonestari
Borrelia parkeri
Borrelia valasiana
Brachyspira aalborgi
Bracyspira hyodysenteriae
Coxiella burnetti
Ehrlichia chaffeensis
Ehrlichia ewingii
Francisella tularensis
Mycoplasma fermentans
Rickettsia spp (9 species)
Treponema carateum
Treponema denticola
Treponema pallidum
Treponema pertenue

They also test for Babesia and fungi.

Spiro Stat uses modern molecular diagnostic approaches that have been validated under stringent criteria. All laboratory testing is performed in association with a CAP accredited CLIA laboratory, Southwest Regional PCR.

For pricing, see:

http://www.spirostat.com/




Monday, August 22, 2011

Nerve disease cell repair 'flaw'

I saw this story on the BBC News today about ALS and possible PD implications.
A breakdown of a recycling system in cells appears to be the underlying cause of a fatal nerve disease.
< http://www.bbc.co.uk/news/health-14591364 >

Friday, August 19, 2011

Dr. Dietrich Klinghardt on Lyme Disease

Dr. Mercola posted a big article on Lyme today. Mostly, it's about Dr. Klinghardt's approaches to treatment, but there's also some other general Lyme info as well. There's a long video with Dr. Klinghardt on it, too.
http://articles.mercola.com/sites/articles/archive/2011/08/27/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20110820_DNL_artTest_B1

Wednesday, August 17, 2011

Personal Update 8-17-11

Letter to my LLMD today:


Hi Dr. ________

Thought I should report to you that I am in major pain. Like number 10 on a scale of 10 in my shoulder, the shoulder on the side where I have the stiffness and tremors. Also pain has increased in the rt arm, which is much stiffer than before. 

To treat the back, I've been to the chiropractor twice and the Feldenkrais practitioner once, and then to my GP yesterday, all for nought, thus far. The pain is between the rt shoulder blade and the spine. This has been going on for over one week now. Everyone seems to think it's a spasm in a muscle, resulting from a strain. But I think it's the parkinsonism which is stiffening the shoulder as well as the arm at this point. What muscle wouldn't freak out from being contracted all day? 

I'm taking ibuprofen a lot and also hydrocodone apap 5 500 that Dr Kurn (PD doc) prescribed a while back. But I am pretty incapacitated and the pain is really terrible. Some relief from resting shoulder on a heating pad in bed. If I do anything more than that with the arm I'm in trouble. 

I'm not sure what to do about the IVs. I don't know if this has been getting worse because of die off/Herx/oxidative damage from doing so many antibiotics and antiviral antifungal stuff all at the same time (remember, I am doing IV ceftriaxone, IV Flagyl, azithromycin, valacyclovir, and Mepron all at once). I stopped everything yesterday. Nothing has gotten better so far. It's about the same if not worse. The foot tremors are also nonstop. 

The pain from the shoulder is radiating down the arm and up the neck a bit. My GP, Nicola Hanchock, ruled out nerve compression yesterday. We are trying to get me into an appointment with the Parkinson's doc Matthew Arnold here in Berkeley to see what he has to say, bcuz it seems as though the parkinsonism has progressed rapidly.

I just ran out of IV Wellness glutathione but I reordered some and I should have it in a couple of days. Other Parkinson's symptoms such as loss of balance, difficulty initiating movement and so forth have also increased pretty quickly. It's rather frightening, but mostly the pain is what is getting to me. Maybe we should have a phone conversation.

The old chest rash around the port has revisited but is about a 2 on a scale of 10. And my swollen red earlobes thing has happened again. Skin is now peeling off them, the swelling lasted 5 days. Now waning. Still swollen and red but less so.   

Bob

Thursday, August 11, 2011

Tracking Lyme Disease in Dogs May Help Protect Humans - Yahoo! News

Interesting means of determining estimated danger of infection in your region.

http://news.yahoo.com/tracking-lyme-disease-dogs-may-help-protect-humans-160807893.html

Monday, August 8, 2011

Antibodies Linked to Long-term Lyme Symptoms

Antibodies Linked to Long-term Lyme Symptoms

from Nature News
Some patients with Lyme disease still show symptoms long after their treatment has finished. Now proteins have been discovered that set these people apart from those who are easily cured.
People who experience the symptoms of Lyme disease, which include fatigue, soreness and memory or concentration loss, after treatment for the disorder are sometimes diagnosed as having chronic Lyme disease or post-Lyme disease syndrome. But these diagnoses are difficult to make, because the individuals no longer seem to harbour the bacteria that cause Lyme disease. And the symptoms could instead be indicative of chronic fatigue syndrome or depression.
Now Armin Alaedini at Weill Cornell Medical College in New York and his colleagues have found that patients diagnosed with post-Lyme disease syndrome have antibodies that suggest they carried the infection for an unusually long time. The finding, published in Clinical Immunology, might help the syndrome to be better understood, diagnosed and treated.

Sunday, August 7, 2011

5 Myths about Lyme Disease Treatment

Here's a very good pamphlet about Lyme disease. A good primer. It's from the Haverford Wellness Center. Oddly enough, it's in Havertown, PA, just across the street from the house I grew up in. I am tempted to go there the next time I get back east.
http://www.lyme-disease-testing.com/5-myths-about-lyme-disease.pdf

Bob

Good List of Glutathione for PD Studies

I found this while Googling around this evening.

http://www.1whey2health.com/parkinsons_glutathione.htm

Lots of links down at the bottom.

Saturday, August 6, 2011

Glutathione and Parkinson's disease: is this the elephant in the room?


Here is info a blog reader found. She said that www.research1st.com had the original story.

Thanks to Marie for the lead!


PubMed Results
Item 1 of 1

1. Biomed Pharmacother. 2008 Apr-May;62(4):236-49. Epub 2008 Mar 14.

Glutathione and Parkinson's disease: is this the elephant in the room?

Zeevalk GD, Razmpour R, Bernard LP.

Source

University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School, Department of Neurology, Piscataway, NJ 08854, USA. zeevalgd@umdnj.edu

Abstract

At least 2 decades have past since the demonstration of a 40-50% deficit in total glutathione (GSH) levels in the substantia nigra in patients with Parkinson's disease (PD). The similar loss of GSH in the nigra in Incidental Lewy body disease, thought to be an early form of PD, indicates that this is one of the earliest derangements to occur in the pre-symptomatic stages of PD. Oxidative damage to lipids, protein and DNA in the nigra of PD patients is consistent with the loss of the antioxidant functions contributed by GSH. Past clinical trials that have used an antioxidant approach to treatment have used antioxidants that might substitute for GSH but these have shown modest to little benefit. More recent studies of the functions served by GSH in cells include in addition to its well-known participation in H(2)O(2) and toxin removal, such roles as modulation of protein function via thiolation which may control physiological and pathophysiological pathways to include DNA synthesis and repair, protein synthesis, amino acid transport, modulation of glutamate receptors and neurohormonal signaling. These multifunctional aspects to the workings of GSH in the cell would suggest that its loss perturbs many different processes and that replenishment and maintenance of GSH per se may be the best approach for preventing progressive damage from occurring. Despite this, few studies have been directed at specifically restoring GSH, although, as discussed herein, its unsanctioned use in PD is growing in popularity. This review will focus on glutathione in PD; the various functions carried out by glutathione and possible consequences of its depletion, as well as measures to elevate GSH in the CNS and its use in humans. Consideration of how the CNS generates and handles the substrates for GSH synthesis is also addressed with the view in mind that this may provide insights into control and maintenance of intracellular glutathione.

PMID:
18400456
[PubMed - indexed for MEDLINE]
Click here to read






Wednesday, August 3, 2011

Dr. Joe Burrascano Audio Podcast

Check out this free podcast on iTunes. This is a very candid talk by Joe to an audience of MD's. I found it fascinating and learned a few new things. Presented at the American College for the Advancement of Medicine (ACAM). Thanks to Hootan for the tip.

http://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?i=95954705&id=351890855


FDA Alert - Diflucan (fluconazole) - Long-term, High-dose Use During Pregnancy May Be Associated With Birth Defects


Drugs.com
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Alert FDA MedWatch Alert
Sent to subscribers of: fluconazole systemic
August 3, 2011
Audience: OBGYN, Pharmacy, Infectious Disease.
ISSUE: FDA is informing the public that treatment with chronic, high doses (400-800mg/day) of Diflucan (fluconazole) during the first trimester of pregnancy may be associated with a rare and distinct set of birth defects in infants. This risk does not appear to be associated with a single, low dose of fluconazole 150mg to treat vaginal yeast infection (candidiasis). Based on this information, the pregnancy category for fluconazole indications (other than vaginal candidiasis) has been changed from category C to category D. The pregnancy category for a single, low dose of fluconazole has not changed and remains category C.
FDA Consumer Updates
Copyright © 2011 Drugs.com. All rights reserved.

Flagyl vs. Tindamax - Bioavailability

I started IV Flagyl today and was researching doses, recommended flow rates, etc. Here's interesting study I just found on the Web. The study compares serum levels of each of these two anti-protozoal drugs over 48-hrs after IV, oral, anal, and vaginal administration. The upshot is that, at least via IV and oral administration, Tindamax has a significantly longer half life.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC184797/pdf/aac00206-0093.pdf

Bob

Monday, August 1, 2011

13 Most Difficult Diseases to Diagnose

A reader sent this in today. A bit spammy because the blog is about insurance, but the info about the diseases is useful.

Hi Bob,
We would love to share with you an article that we just posted on our own blog! "13 Most Difficult Diseases to Diagnose" is linked below and could be a fun way to share this announcement with your readers.
 It has been a sincere pleasure to read your great content.
Sincerely,
Liz Nutt

Thursday, July 21, 2011

Great Podcast on Lyme from Dr. Stricker


There is a raft of excellent podcasts there on everything from nutrition to HBOT to cardiovascular disease. All free downloads from ACAM. Check it out.

Bob

Wednesday, July 20, 2011

Spinal stimulation eliminates Parkinson's symptoms

Mice with a Parkinson's-like disease improved dramatically after their brains were stimulated via spinal electrodes. See the video here:

http://www.guardian.co.uk/science/video/2009/mar/19/parkinsons-disease-spinal-implant-electrical-stimulation

New Federal Lyme Bill Introduced




Blumenthal, Reed, Gillibrand, Whitehouse Introduce Legislation to Combat Lyme Disease
Monday, July 18, 2011

(New Haven, CT) – Today, Senator Richard Blumenthal (D-CT) joined Lyme disease advocates and researchers at the Connecticut Agricultural Experiment Station in New Haven to announce the introduction of the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, a bill to combat the growing epidemic of Lyme disease in New England and across the country. Senators Jack Reed (D-RI), Kirsten Gillibrand (D-NY), and Sheldon Whitehouse (D-RI) are original cosponsors of the legislation. Former Connecticut Senator Chris Dodd, the original author of the legislation, championed the issue during his tenure in the Senate.

Here's the info:

http://blumenthal.senate.gov/press/release/index.cfm?id=E9841CE6-5539-4040-A57B-BD4C5D1C6864

- Posted using BlogPress from my iPad

Tuesday, July 19, 2011

Creatine as Protection Against Parkinson's

Another study found that feeding rats creatine helped protect them against tetrahydropyridine (MPTP), which produces parkinsonism in animals through impaired energy production. The results were impressive enough for these researchers to conclude,

"These results further implicate metabolic dysfunction in MPTP neurotoxicity and suggest a novel therapeutic approach, which may have applicability in Parkinson's disease."5

http://www.brinkzone.com/general-health/creatine-and-traumatic-brain-injury/

Monday, July 18, 2011

Lenovo A700 vs. iMac - update

Lenovo A700 with Windows 7 and OS X

versus....

iMac with OS X and Windows 7

So.... the funny thing is that after all my gloating in a previous post about the Lenovo A700 i5 (two physical cores and two logical cores) and how I got OS X to run on a Windows machine, and how the Windows machine is superior and costs one half the price of the iMac, even I find it hard to believe that I went back to Fry's and traded the Lenovo for a iMac 27 inch with an i5 quad-core processor. Yeah, and I had to cough up another $600 or $700 for it, too.

Why did I do it, you ask?

Monday, July 11, 2011

PD Patients Significantly Improved after Glutathione IV

Here are a few remarkable videos of Parkinson's patients before and after 600 mg of intravenous reduced L-glutathione.  Dr. Perlmutter claims to have been having substantial success with Parkinson's patients using this approach. Look at that video and decide for yourself. I am hopeful, because I am taking intravenous glutathione now, and it does make me feel better, although I am only taking 200mg per day at this point. Dr. Perlmutter is using much higher doses, but is having almost immediate improvements in balance, expression, gait, and mood.

http://www.glutathioneexperts.com/benefits-glutathione.html

His clinic is called The Glutathione Experts (http://www.glutathioneexperts.com/index.html), and the site has lots of useful PD info.
"The highest concentration of glutathione is found in the liver, making it critically important in the detoxification and elimination of free radicals. Accumulation of these dangerous compounds can result in oxidative stress, which occurs when the generation of free radicals in the body exceeds the body’s ability to neutralize and eliminate them. Free radicals are highly reactive compounds created in the body during normal metabolic functions; they can also enter the body through the environment." 

Recovery From Parkinson's Using Chi Gong

Here's a radio interview with Bianca Molle, a friend of mine, who has recovered from PD using Medical Chi Gong as taught by Mingtong Gu in the SF Bay Area.
http://blogtalk.vo.llnwd.net/o23/show/1/973/show_1973055.mp3

There are also videos and a written story available of her recovery.
at www.chicenter.org. Here's the video:
http://www.blog.parkinsonsrecovery.com/chi-gong-and-parkinsons-disease
There are other interviews located at http://www.parkinsonsdisease.me/

You can write to Bianca at bianca1738@aol.com.

Saturday, July 9, 2011

CU researchers find promising drug for Parkinson's disease

The Denver Post
By Margaret Jackson

Colorado researchers have discovered a drug that stops the progression of Parkinson's disease in mice and is now being tested on humans.

View Full Story
http://www.denverpost.com/business/ci_18407428?source=email

- Posted using BlogPress from my iPad

Thursday, July 7, 2011

Virginia Task Force on Lyme Disease - news video about LD transmission


This news brief discusses vertical transmission of Lyme disease.


http://www.wusa9.com/video/default.aspx?bctid=1034578832001&odyssey=mod%7Cnewswell%7Ctext%7CFRONTPAGE%7Cfeatured


Report from Virginia's Task Force on Lyme Disease shows transmission from mother to fetus.


WUSA9.com - 2:12 min. news video

Personal Update

I haven't made a personal entry for a while, so here goes. It's easy to forget to do this, and then I would not have a history recorded anywhere of what I'm going through. So this is partly for my own record-keeping as well as for the elucidation of any readers who might be curious.

In the last few weeks things have continued to progress (decline) in terms of the Parkinsonism. I have worse sleep, typically only about four or five hours a night. Tremors and loss of balance seem to be getting worse. Yesterday I did fall into a wall and hit my head. Just one example. Putting on shoes and stuff like that requires sitting down, although the most difficult thing I do in the day is brushing my hair and trying to put an elastic band around my ponytail. It can take 10 to 15 min. just to do that, and my arms begin to shake. It's very frustrating and I can't figure out how to do it. It's like maybe like aphasia, where someone is searching for a word -- they know the word that they can't find it.

The tremors are beginning to turn into fassiculations and moving up my legs. My thighs now have tremors. My feet are pretty uncontrollable and painful because of the nonstop movement. Torso and limb rigidity (with the exclusion of the left arm) is increasing as well and general stuckness -- all Parkinson's symptoms. Constipation seems to be a little bit better, possibly because I'm tanking up on vitamin C and magnesium oxide a bit more. Sitting in a chair at the computer for more than about 10 min. is agitating and causes rigidity to the point where I have to jump up out of the chair as best I can, which often means lifting myself by my arms, and walking around the room to loosen up my body so that I can sit down again and take a few more words or do some work.

The interesting thing is that I do not appear to have cogwheeling in my arm. That was determined in my last couple of appointments with doctors. I have begun noticing Edema in my right foot and ankle. Not sure if this is the result of the medication, but I have not change my medication regimen significantly recently. So I'm not sure what I can attribute that to. Perhaps some baclofen which I started as a potential means for reducing the muscle contractions in my feet. I am experimenting with reducing various meds in order to see if the edema reduces. I continue to exercise, by walking, occasional light jogging, and jumping on the mini trampoline every day. I also get into an inversion device and hang upside down for probably 15 min. per day.

I am finding it hard to stay on a protein-centric diet because I like fruit so much, but I purchased a bunch of frozen organic hamburger and chicken at Costco and I keep that available for supplementing my protein intake. I am juicing more with my Champion juicer. Everyday I am having some carrot juice with some spinach or hearts of Romaine or something like that and I throw in whey powder for protein as well as hemp protein powder and rice protein powder and a few other odds and ends. Garlic sometimes. Brain fog has been pretty bad, and driving is a bit more difficult, but I can still manage it.

I have been prescribed intravenous glutathione and phosphatidylcholine on a daily basis by my LLMD. I will begin that tomorrow. I will also continue on the intravenous Rocephin, oral azithromycin, and oral Mepron. I continue to lose weight. I'm about 126 pounds now, down 10 pounds from this time six months ago.

Arthritis in my left toes is beginning to become more painful. My doctor diagnosed it as arthritis last week. A trip to my eye doctor noted that I have the beginnings of cataract in my eyes. I am concerned that that might have been instigated by hyperbaric oxygen treatment. That is one of the known side effects of hyperbarics. I was warned about it but only in the case of somebody who already has cataracts. I probably should've had a baseline eye exam before beginning hyperbaric treatments. The ophthalmologist was surprised that a person at my age would have signs of cataracts, and wanted to have a complete list of my medications to analyze and look at possible side effects of cataract production. There may have been other contributing factors than the hyperbaric oxygen. I will report back when I know.

This skin around my port has gotten a rash again, so after two weeks I pulled the needle. I gave it four days to recover and now is fine so I will reinsert the needle and begin intravenous infusions again today. The procedure for infusion of the phosphatidylcholine and the glutathione is a little complicated requiring the use of the 30 mL syringe and dilution with 5% dextrose and water. I think I will let a professional show me how to do it properly.

Please forgive any typos here. I had to dictate this into my iPad. Speaking of which, I bought a new computer to replace my 10 year-old desktop. It's a Lenovo A700. Pretty cool all-in-one computer. It has a 23" touch screen, which is one reason I bought it. It's difficult enough to use the mouse and the keyboard, so touching things on the screen is a big plus. There's a whole raft of these computers available now and they all seem to have touch screens. HP makes them as do Gateway, Sony, MSI, and Asus. For under about $900 they pack a punch, and eliminate all those cables that go behind and under your desk. The Apple iMacs have prettier screens but cost about $1000 more. I almost went for the 27" iMac but opted for the versatility and cost savings of the Lenovo: built-in speech recognition, TV DVR recording, greater number and types of connections, wider variety of software. I even installed Mac OS X on it as well as Windows 7. Best of both worlds, plus touch!

Wednesday, July 6, 2011

Milk Thistle, Vit C+Vit E Can Interfere with Flagyl

Lyme Times Doctors Forum #51 _www.lymedisease.org
 
(http://www.lymedisease.org) or _www.lymetimes.org_ (http://www.lymetimes.org)

"Silymarin (Milk Thistle) has been shown to reduce blood levels of flagyl by 30%, and
effect that could lead to therapeutic failure."

"Vitamin C 250mg BiD (twice daily) , combined with Vit E 200mg BiD,
reduces effectiveness of metronidazole/flagyl through an unknown mechanism."

Lithium Tested as Parkinson's Drug

Lithium, used to treat bipolar disorder, prevents the buildup of toxic proteins and cell loss associated with Parkinson's disease, U.S. researchers say.
Lead author Julie Andersen of the Buck Institute for Research on Aging says preclinical research is under way to determine correct dosages for the drug and the Buck Institute is working toward initiating Phase IIa clinical studies of lithium in humans in conjunction with standard Parkinson's disease drug therapy.
"This is the first time lithium has been tested in an animal model of Parkinson's disease," Andersen says in a statement. "The fact that lithium's safety profile in humans is well understood greatly reduces trial risk and lowers a significant hurdle to getting it into the clinic."
View This News

Saturday, July 2, 2011

Another New Lyme Test Lab

Central Florida Research claims to have a good Lyme test for both humans and pets.





A Smarter Test - The Lyme Disease Antigen Test by Flow Cytometry (LATFC)

Traditional Lyme disease tests such as Western Blot and ELISA tests rely on the patient being sick and for many Lyme disease sufferers these tests come back negative, adding to their confusion and misery. Unlike other Lyme tests, CFR's LATFC test, only available at Central Florida Research, can detect Lyme in any of its three stages:

Stage 1: Early localized infection – 1 to 4 weeks
Stage 2: Early Disseminated infection - 1 to 4 months
Stage 3: Late Persistent Infection – months and years after infection

The price seems to be $250, and the site claims that some insurance carriers will pay for it. They also offer Lyme testing for pets. See the site for explanations of the testing methodology. I will update this entry if I hear any reports from doctors about the efficacy of the tests. If you have any experience with this lab, please leave a comment.

http://www.centralfloridaresearch.com/home

- Posted using BlogPress from my iPad

Excellent Lyme Info Source - Lyme Project

Just discovered this web site, thanks to tipster Hootan:



Lots of resources and info here, including expert interviews, videos, articles. This is the site of Dr. Daniel Cameron, past President of ILADS.


- Posted using BlogPress from my iPad

Ayurvedic Clinic in India for Parkinson’s


A friend of mine recently wrote to me:

“My girlfriend Sorrel, who's an acupuncturist and Chinese herbalist, spent some time a few years ago visiting an Ayurvedic treatment center in India that specializes in Parkinson's disease. She said they've been having remarkable successes recently. Here's the info:”

http://www.facebook.com/l/7d782oyURVnq8YvRTmsEn2vmI4A/www.aryavaidyasala.com

Another NPR Radio Program on Lyme Disease!

 

radio Here’s a link to an excellent program about Lyme, testing, the politics, etc.

“Community Conversation” on WSKG Radio.

Guests:
* Dr. Daniel Cameron, previous president of ILADS
* Pamela Weintraub, author of Cure Unknown

Just click the link below and the show should play. Or, right-click and download the MP3 file and play it later.

http://stream.publicbroadcasting.net/production/mp3/national/local-national-975526.mp3

.

Wednesday, June 29, 2011

"Push" Rocephin Instead of the Usual Drip Method?

In this video, long-time Lyme patient Barbara Arnold (who is now almost completely recovered) explains how she has managed to live with doing over three years of IV Rocephin (Ceftriaxone) without using an IV pole, tubing and saline bags. She developed the technique on her own, partly to reduce her out-of-pocket costs. I thought it was worth doing a little interview with her in which she explains and demonstrates how she does it. (We will post Part 2, where Barbara shows how to actually do the infusion after the syringes are filled.)



Direct link:
http://www.youtube.com/watch?v=X3PTKLi0cvc

CAUTION: Please note that pushing a typical 2G dose of Rocephin should be done in no shorter than 45 minutes, according to one LLMD, who told me it could cause serious harm to the kidneys. So if you do this technique of pushing Rocephin, you might be well advised to mind the clock.

Tuesday, June 28, 2011

Bob Inserts His Huber Needle and Begins Infusion


This is a 40-minute video of a potentially educational (depending on your perspective) and at times difficult to watch process of me shakily inserting a Huber needle into the Porta-Cath implanted in my chest. After I do that, I apply a new bandage and prep for an infusion. Various scintillating commentary along the way, delivered dead-pan. (I really gotta work on my style.)

Have a great time watching this one! As woody Allen said about a bad date he had once, I haven't had this much fun since the Nuremberg trials. All this, because Blue Shield doesn't want to pay for my continued antibiotic therapy with Rocephin (arguably the most effective IV antibiotic against Bb).

(Sorry, the link to the video is broken. I just discovered this. It's the result of Apple killing of its "Mobile Me" service, where I had stored the video file. I'll have to come up with an alternative.)

Monday, June 27, 2011

Largest Lyme Survey Ever

The voice of Lyme patients: CALDA survey results published in peer-reviewed journal

Prior to the 2009 IDSA Lyme hearing, CALDA conducted what turned out to be the largest-ever survey of Lyme patients. Now, results of that survey have been published in Health Policy, a highly regarded peer-reviewed journal.

The study found that patients with Lyme disease have significant barriers to healthcare access: difficulty obtaining diagnosis and treatment, a need to travel great distances for health care, insurance denials, and difficulty receiving care at local hospitals.

Read more about it on the Lyme Policy Wonk blog.

http://www.lymedisease.org/news/lymepolicywonk/198.html