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.

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.

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.

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.

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.

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:
http://www.youtube.com/user/Robertcowart?feature=mhsn#p/c...

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

This is Part 1 of 11.

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.

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:
http://www.earthsake.com/shopsite_sc/store/html/cloudmattress.html ($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?

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. http://www.sfhbo.com/

"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."

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