Porta-cath installed and Leiden Factor V found

I had a little surgery done Tues to install a 'port' in my chest. It's for administration of antibiotics. They gave me a general anesthetic for that. It hurts a bit. I start IV Rocephin (Ceftrixone) soon for Lyme. A video of the procedure (not for the faint of heart) can be seen here:

http://www.youtube.com/watch?v=86UCHPCj4sE&feature=youtube_gdata_player 

My foot and arm tremors are really getting strong and annoying. When I wake up in the morning, they start right up. Unless I stand on the floor, the foot tremors won't stop. Cramping is frequent. Toe joints are enlarging and becoming arthritic.

A new development is the tendency to fall backwards when standing. I keep taking steps backwards to catch myself. Sometimes several. This is typical of Parkinson's, though the Sinemet, Amantadine, and Selegegline I am taking for PD do not seem to help much. Nor do I notice marked decrease of tremor or rigidity. Still experimenting with those as well as beginning Chi Gong for PD. I have located a woman who has cured her PD with Chi Gong as taught by Mingtong here in N. CA Bay Area.   

Turns out a new blood test shows I have extra clotting factor, Heterozygous Leiden V factor, and thus need to instantly get on coumadin and see a hematologist. Sigh. Dr Feig told me years ago we should test my 'coagulation factors' for 'sludgy blood'. Now it's a problem with the port just installed because the port connects to a vein near the neck and a clot could cause a stroke. So I have started coumadin. This gene mutation increases my risk of venous clot 3-8 fold. This is a DNA test and also warns that my relatives could have it too. I have just warned my brothers.  

Amalgam Fillings Clue?

An interesting thing happened last week. Maybe this is a big clue. I went to my dentist to have my teeth cleaned, and while I was there I asked to see my chart. I wanted to see when I had my amalgam fillings removed. As it turns out, I had them removed around the end of 2002, in November. A whole lot of them were replaced with composites. At the end of 2002 is when I got sick! When I read the chart over with the dentist's secretary, I could barely believe my eyes. In eight years of Lyme treatments, why hadn't I checked the date of my amalgam removals?

Just to be sure that the dates aligned, I looked back into my e-mails to friends and confirmed they did (I have all my email back to 1992 stockpiled in archives). So, I got sick about the time I had my fillings replaced. The dentist who performed the removals was not a biological dentist, and he did not comply with the rules that I brought him in an article about how fillings should be removed. He pooh-poohed that idea, saying that he had been working with amalgams for 20 or 30 years, and nothing happened to him. He said people who worry about the mercury in fillings are exaggerating the dangers. I decided to go along with him and let him do the work because he had been my dentist for a long time, and I trusted him. I did insist that he use the evacuation vacuum a lot, but still there were fillings dropping into my mouth, and I was inhaling some of the fumes coming out, I could see the vapor coming out of my mouth. No chelation was used. 

Yesterday, before even knowing this, I felt terrible, and all my symptoms were much increased. Lots of tremoring, even pain. Last night I went to the gym and then into the sauna for about an hour. I sweated a bucketful. Then I came home and had a serious Epson salt bath. Water was very hot. So I'm sure I sweated even more, and got lots of magnesium. I took some gabapentin, and some melatonin and even some oral magnesium, and went to bed and slept longer than I have slept in a long time. In fact, I overslept. That is amazing. Predictably, today I felt much better. My symptoms were minimal. At least they never got to the point of my feeling super frustrated, and my mood was much better. So, it looks like magnesium is a key, sweating to detox is a key, and perhaps I have more mercury in my system than I realize. The issue about the fillings is complicated by the fact that I also had a relationship break up at that same time, so maybe maybe I was hit with at least two stressors at the same time - the relationship break up, and the Mercury. And possibly that exacerbated or brought out the Lyme disease that had been in lurking about in my body all these many years. 

I think I want to focus on some detoxification protocols. I am reading about a couple in a book called "The 10 Best Lyme Disease Treatments" by Bryan Rosner. One of them involves extra-virgin olive oil, Epsom salt, and grapefruit. Then, there are coffee enemas, and a couple of others as well.

Terms and Conditions and Apple Privacy Policy

Hi computery people,

I wanted to update my iPhone apps today because the little red 'badge' thingy on the App Store icon excitedly signaled that 46 of my carefully-chosen (ha, as though I read 200,000 descriptions and reviews) apps needed updating. Cool! New features! Exciting. Apple loves risk-takers like me. Maybe those half-baked apps I took a chance on, even though there were only three reviews that curiously had the same spelling errors, will actually work now. Like the app that figures out what color my parachute actually is. There's an app for that. Good, because I have still have no idea. Or the one that can tell me how much that box of Rice-a-Roni costs down at the Safeway instead of what I'll pay for it at the upscale store I'm actually standing in and stupidly prefer, against my better judgment, just because the lighting is full-spectrum instead of what a friend of mine calls 'Frankenstein.' You gotta admit that it is def just too cool that the phone reads the UPC bar code on any box and looks it up, and tells me immediately where I can save 2 cents. All I have to is be willing to look like a cheapskate geek at the gourmet-ghetto grocery store, struggling to focus my iPhone camera on a Rice-a-Roni bar code. At least people leave you alone. They think you are either an artist hard at work, or one pork pie short of a picnic. Last week I used the bar-code app along with the Amazon app to score a case of Acai smoothie mix. 

This assumes I can get a 3G signal at the store, which I usually can't. And don't get me started about how many dropped calls during critical moments I have suffered with my cute 3GS and its $129/mo AT&T service. But it is SO fun calling AT&T tech support to complain and, once I get a real person, saying "Can you h ear m e  nooww?" a couple of times before the call drops. I had to call back on Skype.

Merry Christmas from snowy Vermont!

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.

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

.

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.