Great Podcast on Lyme from Dr. Stricker

Very interestng stuff...

http://itunes.apple.com/us/podcast/controversies-in-lyme-disease/id351890855?i=95488692

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

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!

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.

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.

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."