Friday, November 26, 2010

Heart tremors, brain drain, and hypoxia?

For the past week or two I've had an increase or recurrence of a symptom that had disappeared, thankfully, but it's back. It is trembling in my chest around my heart area, especially first thing in morning, upon waking up. It's accompanied by a feeling that something is terribly wrong in my brain and a feeling like severe depression, but it's more like just distress. It does not have any cognitive counterpart such as worry or upset over a particular circumstance. It just feels awful, as if something is wrong physically. Associated with it is a high-speed (about 6 cycles/sec) tremor around my heart area, and slower heart palpitations. This is one of the symptoms that disappeared after taking IV antibiotics last year for six months (ceftriaxone).

It may be related to Candida, and I am going to go on a strict anti-Candida diet and see what happens. It also may have something to do with lack of sleep that I'm beginning to experience again. I only seem to be able to sleep at six hours a night now, whereas I had been up to nine hours in the past.
At one point in the past, I suspected that this problem might be the result of low oxygenation or hypoxia, due to sleep apnea. I have been tested at the Stanford sleep clinic three times during overnight stays. It was determined that I do have moderate sleep apnea. However, I was fitted with an oral appliance much like a retainer that one wears after having braces removed. There is a retainer for the top and another on the bottom teeth, linked together by a small, steel rod. The function of this system is to pull the lower jaw forward, thereby repositioning the tongue forward so there is less likelihood of its falling back into the throat and blocking the air passage.

It seems to work quite reliably, and is much more comfortable than wearing a CPAP machine, which I tried for a while and found unworkable due to its discomfort and the fact that it caused air to come rushing out of my mouth rather than into my lungs. I tried various kinds of masks including ones that covered my mouth, and even tried taping up my lips, as suggested by the doctor. All of the arrangements were untenable, so I chose the oral appliance.

I have a pulse-oximeter that I have worn many nights, to test my oxygen saturation level. It takes a reading every second. In the morning I plug it into a computer and get an analysis. Only rarely are there hypoxic episodes. O2 saturation of the blood is typically above 92%.

So, what is causing these symptoms? One fact is that this symptom of brain craziness or feeling that something is wrong re-emerges from time to time in variance with the antibiotics. Daily administration of 500mg IV Ceftriaxone (aka Rocephin) seemed to knock it out. So, it is possibly due to a bacterium such as borrellia (Lyme). Then there is possibly a variation that correlates with the amount of sugar I am eating, and thus the amount of Candida in my system. So perhaps it is yeast that is to blame. In any case, I suspect that apnea it is not the issue.

Questions remain: Why has it increased post HBOT? How will my recent addition of Valtrex (to address Epstein-Barr and HSV-6 viruses) affect things? Should I go back on IV? Stay tuned.

Sunday, November 21, 2010

Dell Duo vs. IPad vs. Netbook

In case you haven't heard the buzz, the stylish Dell Duo is about to launch. Ah, the NEW, new thing. Sort of new, sort of repackaged netbook. Been considering it still, due to cool factor, but you see, I already have an iPad and just bought an Asus Eee PC 1005PE for $219. It has a 250GB drive, Atom N450 processor at 1.66 GHz, 1GB RAM, 10″ screen, 11 hrs battery life, weighs in at 2.8 lbs. Now, you gotta admit, that's a deal. The 64GB 3G iPad cost close to $800. Big premium paid for slick interface and App Store, and 3G service. Oops, and don't I pay a hefty monthly ATT bill for the 3G? $25. IPad = ouch. Eee = deal. But what am I writing this on, slouching in bed in the dark? Guess. IPad.  

I also have an HP TX 2500 tablet PC 13″ screen (supports pen AND touch input, has a terrific keyboard, DVD writer, fingerprint reader). The HP totally rocks due to touch and stylus (handwriting recognition, drawing, One Note, etc), but runs too hot and the fan is too loud. The Asus Eee PC, on the other hand, is quiet, light, quick enough, and does full speech recognition with Win 7 Speech Recognition software built into Windows 7. The Eee boots to web access, chat, or games in 5 seconds, without even running Windows. 

By contrast, the iPad is the best multi-touch interface currently available, hands down. It is smooth, intuitive, does what you expect it to do, and doesn't exhibit unexpected pauses or erratic behavior. I can whip through emails, search for emails and find them easily, delete undesired emails in a batch quite quickly, save photos sent in emails, forward web address to people via email, and so much more easily than I can in Windows using even a powerful program like Outlook.

I would love all these technologies in one device, but at this point there is no perfect solution. My current travel solution is to take iPad and the Eee, and my small folding bluetooth keyboard (made by Think Outside) for use with the iPad. With this combo, I have: Windows, Office, the App Store, WiFi, 3G access, iTunes music and movies, Flash, iBook store, Netflix instant movies, Kindle reader, Dragon dictation on iPad, and full speech recognition on the Eee netbook. Total weight <7 lbs. The iPad runs ~15 hrs on a battery charge and the Eee runs ~9-11 hrs. 

Too bad the new Dell Duo multi-touch-screen convertible netbook-ish Win 7 PC has a weak, unreplaceable battery. It could almost be an iPad killer. As it is, Apple has even me, a 20-year Windows veteran and author of over 20 Windows books, over a barrel and becoming a quintessential "switcher." it's getting to the point where I think using a mouse is soooo 2009.  

I suspect the new crop of Android-based tablets are going to give the iPad a run for its money. They are way cheaper (albeit smaller) and the Android app store is becoming respectable in size and variety of offerings. If you like portability and touch and good battery life, another place to look is towards the touch-screen netbooks such as the Lenovo Ideapad S10-3T or the ASUS 

10.1" Eee PC T101MT Touchscreen Netbook


Saturday, November 20, 2010

Lyme disease update

Yesterday I had a 2-hour session with my neurologist.  I had not seen her for some time, a couple of months.  We went over whole lot of lab tests, and discussed the outcome of the hyperbaric therapy so far.  Looking at some lab tests it appears that there may be some viral infections (EBV and HSV 6), so I will begin taking Valtrex, starting at 1 g per day and increasing up to 3 g per day has tolerated.

A common problem for people with Lyme disease is their tendency to accumulate heavy metals.  We will be doing some additional heavy metals testing to determine what my current load is.  Past tests have shown concerning levels of mercury, lead, aluminum, manganese, and uranium. We're likely to do a challenge using DMSA to help free up the heavy metals and release them into the urine.  My doctor said it's important to make sure the methylation pathway is working properly before using the DMSA because of potential irreversible brain damage that could result from freeing up the heavy metals for the test.  This was a little alarming to hear, because I have used DMSA before. The plan is to ensure that adequate amounts of key nutrients necessary for detox are in the blood, and that the excretory system is working properly before beginning chelation.

I have been feeling very shaky  and rigid (i.e. parkinsonian) since finishing the hyperbaric therapy, as noted in my previous blogs.  I have began having heart palpitations and poor sleep again.  I am hoping this is a Herxheimer reaction, and not a regression to things as they were years ago.  Time will tell.

Monday, November 15, 2010

HBOT finished. Now what?

My last HBOT session was Wednesday, November 10. Today it is five days post my 40th session. So far I have little to report. My parkinsonism is just as bad as it was, if not worse than when I started the sessions. My eyesight is blurry, as expected, which should clear up within 4 to 6 weeks or so I am told.

My hearing feels somewhat strange, but I do not actually know the cause. Some hearing strangeness did begin with the HBOT sessions, I can say that. For a while, my tinitus was quite a bit worse than usual. (I have had ringing in my ears for about 20 years). It was significantly worse last week, now but it has calmed down. I thought I had lost some high-frequency hearing for a while, because I used to be able to hear very subtle sounds such as the sound of rubbing cloth or water coming out of the faucet--that kind of thing. Or the ambient sound in the room, which is pretty subtle, such as the slight echoing sound that a room makes when you speak or walk. So sounds seem to be attenuated. However, when listening to my stereo system, I can tell that high frequency hearing has not been affected. I can hear very high frequency sounds when music is playing. It seems to be mostly that there is little loss in acuity across the board.

The tests I had done at the audiologist before about the 20th session of HBOT, shows that I had a decrease of about 30 dB in the 8 kHz range. That is a significant drop. But that may have pre-existed before the HBOT sessions, I'm not sure.

Meanwhile, joint swelling in the toes on my left foot, degraded eyesight, rigidity in the right arm, and tremors everywhere (except head and left arm) continue. I feel very sick, have short energy supply, balance problems, and a lot of anxiety still. The HBOT doctor suggested my next stop should be metals chelation and possibly stem cells taken from my hip and injected into my bloodstream. I will investigate those this week.

Sunday, November 7, 2010

HBOT Herxing getting worse

I have been experiencing a significant increase in symptoms in the last few days. I have completed about 37 sessions of hyperbaric oxygen at this point. In the last few days the tremors, rigidity, depression, insomnia, nightmares, balance problems, weakness, brain fog and anxiety have increased significantly. The nurse at the hyperbaric oxygen clinic suggested yesterday that I should skip my session and instead go for colon hydrotherapy for detoxification. The belief is that the symptoms are being worsened by toxic overload in the system. The toxic overload would be the result of die-off of Lyme disease bacteria from hyperbaric oxygen. So I did that, and there was some relief last evening, but this morning things are back to feeling quite shaky, and sleep was not very good. I am having to write this with voice recognition as a result of the extreme rigidity in my body this morning.

The peripheral neuropathy is the worst. My toes are cramping and curling, as well as shaking, both feet are shaking, my right hand is particularly shaky, and right arm is rigid. The only way to get some relief with my feet is to stand. If I am sitting or lying in bed reclined, then they have nothing to push against, and this makes the tremors and cramping worse.

There is clearly a correlation between the hyperbaric treatment and the worsening of symptoms. This leads me to believe that it is true that just as with antibiotics, hyperbaric oxygen will cause die-off of Lyme or other related bacteria. However, in addition to killing the cooties, hyperbaric oxygen heals and causes revascularization of the body. So, unlike antibiotics which can have deleterious side effects, the hyperbaric oxygen will have beneficial side effects and presumably can do no harm. There are very few contraindications with hyperbarics as regards medication, which is also good. I have not yet begun using antibiotics simultaneous with hyperbaric oxygen treatment. I am cautious about doing so, because of the strong Herxheimer reaction I am already having with hyperbaric alone.

I believe my next step is to look into heavy metal detoxification. A number of tests have shown that I have a high amount of a various assortment of heavy metals such as aluminum, mercury, lead, cadmium, manganese, and uranium. Yes, uranium! That was a surprise. For some reason, for reasons unknown, people with Lyme disease have difficulty excreting heavy metals. Therefore, metals build up in the system and have to be removed one way or another, such as by chelation. Supposedly, once the body becomes healthy again and the Lyme bacteria are eradicated, the ability to excrete heavy metals normally returns.

One theory about metals accumulation is that the Borrelia bacteria sequester the heavy metals as part of its manufacturing of the biofilm that it hides itself in (cyst form of Borrelia) when its environment becomes hostile, such as after antibiotics are introduced. When using a "cyst buster" such as Flagyl (or perhaps even hyperbaric O2), heavy metals can then be released into the system and cause toxicity with various side effects.

Thursday, October 28, 2010

HBOT and Lyme update

Yesterday I had my approximately 35th hyperbaric oxygen treatment. It seems to go relatively normally. In fact, I have no trouble doing the dives at all. I seem to be getting better and better at clearing my ears as the dive progresses. I realized that I was clearing my ears in the wrong way, blowing from my lungs instead of just trying my neck or my face. It's hard to describe how I actually do it now. But it is much easier, and I don't put my lungs at risk.

In any case, today I am a mess. Actually, yesterday in the afternoon after the treatment I was, also. But this morning I am particularly a wreck. I guess I am having a symptom flare today. Last night despite the good news of the San Francisco Giants winning the first game in the World Series against the Texas rangers, I had ridiculously bad sleep, even with nightmares, waking up in the middle of the night with chest tremors and heart palpitations, and this morning being a wiggling mass of neurons. My feet and toes are out of control, my right arm and right hands are shaking like leaves, I have tremors in my chest, and I feel pretty depressed. This must be a symptom flare, with the hyperbaric oxygen treatment finally catching up to me. I can only hope it is good news, although I am apprehensive because tomorrow I have to get on a plane and travel to Virginia to see my family.

This probably sounds like toxic buildup from the hyperbaric treatments killing off the Lyme disease bugs. This probably is true. However, I have been trying to keep up with this and keep ahead of the toxicity by having colon hydrotherapy appointments. This week I had a two hour hydrotherapy appointment in fact! :-) Boy, that is fun. Pretty interesting way to get to know someone. The woman who runs the clinic and does the treatments for me -- Anne, at Body Harmony in San Francisco -- really knows her job. Usually, after the treatment I feel quite good. Tuesday was no exception. I probably could use another one now because I probably have additional toxic build up. Oh well, one can only do so much, and afford so much treatment at any one time. I will have to struggle through this, and go to hyperbaric oxygen treatment again today and hope I am not too much of a wreck to travel tomorrow.

Wednesday, October 20, 2010

Hyperbaric update

This is about my 26th day of HBOT. Today things are feeling very edgy. I have noticed an increase in all symptoms. The hyperbaric oxygen must be doing its thing. Either that or it is causing damage, advancing my Parkinsonism. So far, what I have noticed are the following: increased tremor in everything that normally shakes - left foot, toes, right arm, hand, fingers; increased rigidity in right arm; arthritis and enlarged joints in toes on left foot; Bradykinesia - difficulty initiating movement in general, but especially rotating when standing, rising from a chair; weakness in general, especialy noticeable when trying to get out of bed. Turning over in bed is difficult; eyesight has gotten worse. I am myopic to some degree already but have worsened by about 1.25 diopters. This is supposedly due to oxygen swelling the corneas and will revert about 6 weeks after ending hyperbaric treatments. A new symptom in the last week is joint pain in right shoulder and muscle pain in the right arm when lifying or pulling. There is generalized anxiety and depression, which are worse now. Irritability is also worse. Sleep, miraculously, is ok.

There IS a plus side. Occasionally I feel a cessation of tremor, a renewed sense of well being and desire to 'stay and play' rather than feeling that old, nagging 'fight or flight' activation. In other words, the sympathetic nervous system seems to have started to chill out a bit. These brief respites from feeling plugged into an electric outlet have been rare, but I am told they will increase in frequency.

I have started meditating while in the HBOT chamber, instead of watching movies, instructional videos, or listening to lectures. I find this is more relaxing and is probably more healing. I put in foam earplugs and cover my eyes. It's like being in the womb. Luckily, I'm not claustrophic.

Monday, October 18, 2010

Adyashanti interview with Bob Cowart - Part 01 of 11

Northern California-based spiritual teacher Adyashanti speaks candidly about his own process of awakening, how he became a spiritual teacher, what enlightenment is, the various pitfalls of spiritual practice, and more. To automatically play all 11 segments, go to:

I conducted this 1-hour-and-45-minute interview in Adyashanti's house in Northern California in 2002.

This is Part 1 of 11.

Thursday, October 14, 2010

Hyperbaric Oxygen update

I have finished about 25 sessions of hyperbaric treatments so far . One of the problems I have had just had my ears cannot equalize properly under pressure. So I have had difficulty clearing my ears, and if your ear drums become compressed too much they will tear. So, the technicians at the hyperbaric Institute will not let me dive sometimes. This has sent me to the ear nose and throat doctor twice. We examined my ears, and did an audiology exam to check my hearing, and I had a consultation about the possibility of getting "ear tubes" installed in my ear drums. These allow the pressure to equalize easily, by allowing the pressure to pass through the tubes instead of through the eustachian tubes that are in your head. Interestingly, the insertion of ear tubes or grommets is the most common surgical procedure performed on children nowadays. It is a treatment for children who have chronically infected middle ears, which causes pain and often causes decreased ability to hear in the classroom, etc.

We also talked about the possibility of hearing loss as a result of the ear tubes. There is a possibility of low-frequency hearing loss, and also a possibility that the air holes, the holes in the ear drums, will not close completely after the tubes are removed. This can result in a inability to swim without earplugs, for fear of getting an infection in the middle ear.

All in all, this did not sound very exciting to me, because I am very attached to my hearing, being a musician. This is especially true as I am a musician who currently cannot play music, due to the effects of Lyme disease. I used to play piano quite a bit, and I can barely muster it now because of loss of dexterity in my right arm. So all I have left in the way of music is the ability to listen to it and appreciate it. The audiologist to get a baseline test of my hearing, and noted that I have a 32 dB or 30 dB reduction at 6000 Hz. This is a serious drop off. It comes back up at about 8000 Hz, but they do not test above 8kHz so I do not know what my hearing is about that. But I can report that since I started the hyperbaric oxygen treatment I have experienced the loss of high frequency response. This may be due to fluid in the middle ear, and occasionally I experience clearing, and the frequency response seems to come back. So I am hopeful that this is a temporary effect.

Ironically, hyperbaric treatment is used in cases of hearing loss to help repair hearing. However, little is known about the inner ear, and how it works. It is possible to incur barotrauma, and since the inner ear is a self-contained unit, it is possible that pressure could build up in the inner ear, causing loss of balance and the loss of hearing function. It is not common, and I have difficulty finding anything about this on the Internet. So I am assuming that it is not likely. But I can only report at this point that I have experienced the loss of high frequency sensitivity, I am very aware of this being an audiophile and listening to music and being very aware of the sounds of nature, ambient room sound, the sound of the rustling of cloth, paper, running water, etc.

Wednesday, June 9, 2010

Finale to the memory-foam/latex/wool bed search

A couple of days before I took off for Brazil again (for 2 1/2 weeks
for treatment for Lyme disease) I took possession of my
newest bed. This is the ongoing story of Goldilocks, who
has been searching for the one that is oh, just right. Well, it's sort
of a cross between Goldilocks and the Princess and the Pea.
As you may recall from previous bed entries in this blog, I decided to get
rid of my old and trusty Simmons Beautyrest mattress almost three or four years
ago because it had developed some significant valleys. That led to a series
of catastrophic purchases that were a) expensive, and b) extremely
difficult to get into and out of my hillside house. (A California King-size
bed up the 100 stairs from the street into the bedroom is no small feat.)
The ultimate insult added to injury was that each of these mattresses had
some kind of chemical smell to them which made them onerous to the
olfactory nerves, and probably not good for the body or nervous system.
This was ironic, considering that I am suffering from a neurological disease
-- neuroborrelliosis (typical of "late" Lyme disease).

But I am here to report that patience, in this case, is the better part of
valor. And also that the fourth time is the charm. True, I did have to eat
$1500 for the last mattress which was composed of natural latex foam (6
inches of it) topped with three inches of synthetic memory foam. When I
called the manufacturer of the latex portion of that mattress to complain
about the smell, the sales representative said "The retailers should
tell people that these mattresses are going to smell a bit like exactly
what they are -- rubber. He suggested that I spray it with Fabreeze, a
commercially available spray that masks smells. I said I thought that was a
bit ironic considering I was trying to deal with chemical sensitivities.
After eating the $1500 because the mattress merchant, Foam Creations on
Solano Ave in Albany, CA has a no-return policy, I next tried a mattress
from European Sleepworks. I chose this company largely because of their
catchy radio advertisements claiming that they build their mattresses from
"all natural materials" and they're very sensitive to the needs of
sleepers with chemical and physical peculiarities. So a roughly $2000
California King was delivered up the 100 stairs again. But woe and chagrin -
it too had the telltale latex smell, precisely because it has several
inches of natural latex resting atop the micro coil springs. Once
again, a very comfortable mattress which I hated to sacrifice. But
at least this time the sacrifice was minimized and as I merely paid the
return fee of $70 to the disgruntled movers who came and hauled it away, no
questions asked.

Incidentally, if you intend to try a European Sleepworks mattress, I highly
recommend you have a clearly articulated conversation with someone in a
position of authority there before making the purchase. They do have a
"comfort exchange" policy for 60 days, during which they will try to make
your sleeping experience a comfortable one. But if you want to make sure
that you can return the bed for a full refund, just make sure you have that
understanding in advance.

I was beginning to feel hopeless about ever finding anything I can sleep on
that was comfortable and that I didn't have any chemical sensitivity to. It
was beginning to look like I would be sleeping on a board. I was never one
as a child to have chemical sensitivities, but suddenly I could smell all
kinds of chemically things in sofas and pillows and mattresses. It seems as
though my ability to spell certain ingredients used in mattresses had been
amplified through these exposures. But I started reading about natural,
organic cotton and wool mattresses and began to stop into a store or two
that appeared to carry such niche items.

One such store is in San Francisco is called a Happy Planet, and another one
is in Berkeley, called Earthsake. These stores have very good salespeople who
rave about organic and natural beds. The prices were roughly
equivalent between these two stores for California-King-sized natural wool
and cotton batting with an inner-spring-style foundation. As the crowning glory, both
stores wanted to sell me three or four inches of good, fluffy wool in a
topper. However, Earthsake was having an anniversary celebration, and they
knocked something like 10% off of the price if I were to purchase on the
actual party day. So that clinched the deal for me. I bought the Cloud: ($1850)
with the 3" PureGrow Wool Filled Organic Cotton Mattress Pillowtop ($715).
I was a bit out on a limb at this point, though, because they do not take
returns, only exchanges. Also, the Earthsake delivery fee significantly
exceeded the $70 European Sleepworks charges. But I was getting
desperate. After three or four years of funky sleep, the mind does
strange things and is willing to take extreme measures. So, I was willing to
pay $270 on top of the $2000 for the mattress and topper. I crossed my fingers
and toes.

I am more than overjoyed to the report that the six-week wait I had to
endure with no mattress to speak of (other than a piece of old foam) was
well worth it. I love this Earthsake mattress. Of course, as I have
learned, nothing is without smell. So, even a natural, organic wool
mattress has a bit of a telltale odor which the manufacturer claims is the
smell of lanolin. But it is hardly objectionable, and hardly noticeable.
The wool topper is a must. Without it, the extra-firm mattress would most
certainly be uncomfortable and cause pressure points. With the topper, the
combination is cloud like. It is definitely different than a memory-foam
mattress, which I find to be probably the most comfortable mattress
available (I do not sleep hot on them, although many people do). But
considering the potential off-gassing hazard and the likelihood of smell,
and since we spend easily 1/3 our lives in our bed, I highly recommend your
checking out what I have had to learn the hard way. The take-home message
is as follows:

a) Purchase only a non-petroleum-based mattress and make sure that fire
retardants are not used. A mattress wrapped in wool does not require a fire
retardant, because wool is naturally fire retardant.

b) Buy as locally as possible, with an agreement that you can return the
mattress for at least a comfort exchange and preferably for a full refund if
you're not happy with it. The seller should give you ample time to
test-drive the mattress (European Sleepworks gives 60 days, for example,
which I think is generous). Shipping a mattress across the country is very
expensive and you don't want to have to do it twice. Make sure you know
what the delivery charges are, even from a local retailer. As my story
shows, the price can differ by as much as $200 each direction even between
two local retailers in the same city.

c) Objectionable odor should be a substantial enough reason for return of a
mattress. Some standard comfort exchanges do not cover odor. Odor is even
more subjective than firmness. For people who have chemical sensitivities,
proprietors may feel that their customer is even having a psychosomatic
reaction. However, this should be irrelevant. Keep in mind that smaller
retailers cannot afford to take mattresses back, because returns have to be
destroyed or given to a charity once they're slept on. Larger retailers can
handle the costs incurred with returns because they make up the difference
in volume.

d) Read up on the Internet regarding the brand and model you are interested
in. There is plenty of information about nontoxic bedding.

e) Go to the store that has the mattress you are interested in. Make sure it is the exact
mattress. Go more than once. Visit the mattress at least twice, possibly
three times on three different days. Expect to spend at least 30 minutes
each time lying on the bed in different positions, on your side, on your
back, and even sitting on the side of the bed to see how it feels to stand
up from lying prone. Can you turn over easily and shift your position on
the bed? Go with your gut feeling about a bed, in the end. Your head might
tell you one thing about it such as it might last longer, or you like a firm
bed and this one is really firm, or you like a soft bed and this one is
really soft, etc. But just go with your gut feeling. Does it feel good to
get into this bed, do you feel supported and happy?

Friday, May 14, 2010

Hyperbaric Oxygen Treatments Commence

This is the hyperbaric oxygen chamber that pumps pure O2 into me at twice normal atmospheric pressure for an hour a day. It's for treating my Lyme disease and Parkinson's. I am noticing interesting things. Emotions are waking up. Positive ones. Feelings I had forgotten existed. Don't know if it's the dopamine agonist (Parkinson's med) or chamber, but it's pleasant, so I don't really care!

The staff who run the place are Lyme literate, and very helpful.

"The San Francisco Institute for Hyperbaric Medicine is a state-of-the-art healthcare treatment facility located in the South Beach area of San Francisco. We operate with the dual missions of providing hyperbaric oxygen therapy (HBOT) treatments to private patients, as well as advancing the field of HBOT through clinical research. Hyperbaric Oxygen Therapy is the use of intermittent, high-dose, oxygen as a drug. By giving pure oxygen in a pressurized chamber, HBOT delivers a massive influx of oxygen -- even to areas of poor blood flow -- and results in remarkable benefits that cannot be achieved with any other therapy."

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