Thursday, April 29, 2010

Follow my LymeTweets

My Lyme odyssey updates are being sent daily on Twitter, often as audio tweets. My Twitter ID is @bobcowart. 
Even better, you can link to my Twitter page:
There you can find me there and easily click the "follow" button.


Bob Cowart

Flushing my PICC line

Check out this video on YouTube. It illustrates how one does a daily
flush of an antibiotic IV line used for Lyme disease treatment.

Sunday, April 25, 2010

Lyme Conference in San Ramon yesterday

Yesterday I went to a Lyme disease conference that was held in San
Ramon, California. There were a couple hundred people there probably
and some very good doctors spoke. For example, Dr. Christine Green,
Dr. Rafael Stricker, and Dr. David Martz. There was a fair amount of
discussion about the most recent bad news, which is that the IDSA has
announced its findings after a recent panel discussion and evidence
being presented by various doctors specifically from ILADS at a few
months ago. The first group stands for the Infectious Diseases Society
of America. The second acronym is for the International Lyme and
Associated Diseases Society.

(Pardon my capitalization and spelling, as I am dictating this into
the Dragon naturally speaking voice recognition application on my
iPhone, because it is difficult for me to type on a keyboard.)

There was great disappointment among all, because of the recent
findings of the IDSA, which essentially is that they found no need to
change their standards of care for the treatment of this horrible and
debilitating disease. This, despite significant evidence to the
contrary, evidence supporting effective treatment using long-term
antibiotics. I personally listened and watch the eight hours of
testimony given last summer at the IDSA meeting back east. Even my own
doctor, Rafael Stricker was one of the presenters. He had much
scientific evidence to present supporting the claim that long-term
antibiotic treatment is in fact needed, called for, and often
effective in the treatment of 'late Lyme disease.' However, due to
what I believe to be conflicts of interest between members of the IDSA
panel and the insurance companies involved in paying for the very
expensive long-term intravenous antibiotic treatment for the disease,
the vote by the panel was, I believe, skewed and biased. The panel
originally heard new testimony on this issue as a result of a case
brought by the Atty. Gen. of the state of Connecticut. See here:

He believed there was bias on the panel that affected the care and
treatment of thousands of individuals with this disease, and so forced
the issue.

Now we are back to the drawing board with many states and insurance
companies still refusing to support the care needed to treat the
disease. I myself, have paid over $1000 a month for my antibiotic
treatment. This is out-of-pocket, in addition to the over $600 a month
I pay to Blue Shield, my insurance company. And that does not include
my doctor visits which are about $300-$500 per month, most of which
comes out of my pocket because my doctors are not enrolled in the
insurance company panels.

Why these doctors choose not to be on the insurance company panels is
another question, one which I am researching. It has mostly to do with
the difficulty in collecting from the insurance companies, I suspect.
But it is a critical issue, and I do wonder about the profit motive. I
believe that treatment for this disease should be affordable, and it
is unconscionable that there are many who go without treatment, and
often become very sick and sometimes even die as a result of lack of

There is, for good reason, I believe, a cadre of doctors who believe
strongly in the efficacy of long-term antibiotic treatment -- either
orally or intravenously -- for this disease.

Therefore, it was very disappointing to hear the new findings of the
IDSA, essentially stating that the current standard of care (which
amounts to about one month of the simple antibiotic doxycycline), is
substantial and adequate in all regards for the treatment of this
nefarious disease.

I write this as I lie in bed, limbs shaking, speaking into a computer,
because I cannot type. This is significant, from a previous author of
47 large books approximately 1000 pages each, and who used to be able
to earn a substantial living. I am now incapacitated and about to
apply for disability as a result of my incapacitation. Luckily there
is an application for the iPhone that allows me to speak into it and
to write at least short pieces such as this.

Thursday, April 22, 2010

Latex bed update

Well, I have tried the European Sleepworks bed now (approx $2000) and it, too, smells. They are picking it up on Friday. I tried it for 60 days. At least they allow returns! About $140 in delivery and pickup charges.Next I will try an all-wool mattress -- inner spring and wool, topped with a wool 3" topper, from Earthsake, in Berkeley. Hopefully this will feel good and not smell like rubber!! Also about $2000.

Political Fundraising -- AAArg!

Just got an email from Brad Woodhouse of the Dem party, asking for $ to oppose the Republicans who are opposing banking reform. What irony. Here's a long letter I wrote in reply:
Dear Brad,
I keep being contacted by the DSCC and members of Congress for more and more contributions. This is ironic considering the state of the economy, and my health care situation, which is that I have paid $70,000 out of pocket for my health care, which is breaking the bank. Not to mention the state of the banks themselves. It must be clear to everyone in Congress by now that until we have real campaign-finance reform that our country will be hemorrhaging financially even more than already necessary. The DCCC e-mail i got this morning says that the Republicans spent $86 million fighting healthcare reform, and the Democratic Party probably tried to pass the bill by spending equal amounts. So let's figure at least $200 million was spent just campaigning for this new health care bill. If we include special interests, it's probably a billion. Talk about irony. What could we have done with $200 million? Save lots of schools? Provide healthcare for thousands and thousands of people? Feed the hungry? Instead it goes to lobbying and media ads.

To quote The News Hour interview with DAVE LEVINTHAL, Center for Responsive Politics (Dec 22, 2009):

"But what the founding fathers probably didn't anticipate when they were writing the Constitution is $3.3 billion spent on lobbying, as was the case in 2008. So, you have a situation where a lot of people feel like lobbyists and the people who hire lobbyists have really have taken over the process."

During the primaries for the last presidential election cycle, Joe Biden put it best. During a primary debate, he was the only candidate with the nerve to say that until campaign finance reform occurs and corporate money is taken out of financing campaigns we would not see any real change in Washington. So, as one of your constituents who has paid dearly to help elect Barack Obama, and often contributed to and to the Democratic party, I just want to say that I am done with making financial contributions to political campaigns and causes.  Our nation's political campaigns should be financed publicly to level the playing field for all candidates. And this new policy of allowing corporations equal rights in campaign contributions is ridiculous. Although the Supreme Court argues that it is a constitutional right since corporations enjoy the same benefits as do individuals in this country, it is clearly insane that a corporation should have the right to contribute to political campaigns. The next thing you know, Congress will have human representatives of corporations filling seats.

Two or three states in our Union have adopted a public financing model for state politicians. I have interviewed one from the state of Arizona, Marc Spitzer, who said his entire strategy of work changed when he finally was converted from the old favor-payback system to public financing. Here is a quote from Spitzer from an interview with Bill Moyers on his program NOW:

MARC SPITZER: I'm running for an office that is very powerful in the state, that regulates the utilities. Does it make sense for me to go hat in hand to those utility companies to ask for campaign contributions and then if I win the election turn around and--and vote on their rate cases. Most people thought that would--that didn't make sense.

MOYERS: Spitzer had served four terms in the state Senate. And learned what it takes to raise money from special interests.

MARC SPITZER: Typical campaigns you spend an awful lot of time dialing for dollars. You're on the phone, you're calling people and you're asking for money.

MOYERS: Public funding changes all that.

MARC SPITZER Under Clean Elections once you raise the requisite number of five-dollar contributions, the fundraising is over. And you can spend all your time communicating with the people."

So, Brad, I'm going on record as choosing to no longer make contributions to political campaigns or efforts. I would like to encourage you to support any bills about public financing and campaign finance reform that come across your desk. I already pay enough taxes, and would be willing to pay a little bit more knowing that there was an equal playing field for all for all political candidates and causes.

Only a few weeks ago, many Americans thought the possibility of real health care reform was impossible in this country, due to the influence of special interests. Now this has been shown to be untrue. This Congress can do amazing things, like flying in the face of corporate influence. Now it is time for real campaign finance reform while we have momentum. Let's get the big money out of politics and free up our politicians to do the work that we have elected them to do, without the obligations they feel to those who paid for their campaigns -- the big businesses and deep pockets they owe favors. Let's see if we can actually  set an example for the world of what real democracy is, not what the military-industrial complex, or big corporations, or special-interest groups would like America to be. Think of all the good we could do with the money that is wasted on lobbying and on political campaigns. And think of all the work you and Congress could get done for us, your employers, if you all didn't have to constantly worry about financing your next campaign cycles.

By the way, asking folks to give politicians their hard-earned cash every day to support their causes, when the banks have already pilfered our savings as a result of poor Congressional versight and SEC ineptitude is an insult to our intelligence. As Einstein said, you can't solve a problem on the level of the problem. Throwing good money after bad is false economy. Get to work  introducing bills and changing policy, not championing partisan causes by filling your advertising war chests with donations from us, your tax-paying employers. We already pay you a salary. Funding a charity is one thing. I can get behind that, because they have no other sources of incme. However, funding causes brought by politicians is a very weird and undemocratic way to conduct governance in a country supposedly dedicated to the Rule of Law and the superiority of democractic principles. Does it really boil down to who ever collects the most advertising money wins the political initiative du jour? What kind of democracy is that? One where a dollar is mightier than a vote? And we wonder why voter turnout is so low. 

Bob Cowart

Bob Cowart
Author of 47 books about computing