Personal check-in / Torso shakes are back...

I have a feeling like electricity running all through my body when I wake up in the morning. Even if I take slow-release Sinemet CR at bed time, it just feels like I am vibrating internally, through my trunk, legs, arms, everywhere. Some people with Lyme disease report this, and it can be the result of infection, but I'm wondering if people with Parkinson's do, too. It's a very high speed feeling. Not like an 8 cps tremor – it's faster – but a tremor sensation, nonetheless. I felt it most strongly in the heart area when it first began a few years ago, but now it is spreading through the whole body. It usually decreases when the Sinemet, etc kicks in. (I'm taking (1) 25-100 Sinemet, 2 mg Artane, and 100 mg of gabapentin, every four hours that I am awake.)

For a couple of years, I could make this feeling go away if I sat quietly and closed my eyes to meditate. It would just vanish, so long as I stayed meditating. Meaning, within the meditation session. So, that was a lovely way to still be awake and experience non-tremor in any part of the body. My whole body would just relax and feel very calm and centered. But I guess things have progressed. Or regressed. Now the sensation is much stronger and I require some pharmaceutical help for that to work.

Of course I have the usual worries that I've created a monster. By taking Sinemet, have I reduced my brain's ability to produce dopamine? And then the downward spiral of having to take ever-larger doses, eventually accompanied by dyskinesias.

I had a long talk with my Lyme doctor yesterday about all kinds of things, including heavy metal detox strategies. I'm going to begin on those hopefully next week. We'll do a challenge test using a heavy metals chelator such as DMPS or DMSA, and a six-hour urine collection. Then look for the metals. Then, based on that, we'll figure out a detox protocol which will probably entail - among other things - using intravenous glutathione and phosphatidylcholine (PC, for short).

I'm starting to see faint tremoring in my left fingers. This is a drag. My left hand was the steady one, and seemed invulnerable, or at least I hoped it was. But, as people with PD know, unilateral appearance of PD is typical, slowly spreading to bilateral. In my case, the strange thing is that I have had kind of a cross wiring, with my right arm and my left leg first affected. Then the right foot, and now beginnings of the left hand. If anybody knows if the cross-wiring thing is indicative of anything in particular, please comment. [To comment you have to open an article by double-clicking on it in this list. The post opens then, with a comment window below it.]

I made a video of close-ups of my hands so you can see the tremoring. I'll see if I can post it to YouTube and add it here, later.

Personal Video Check-in 3-14-13

Here's some of the latest scoop on how I'm doing with my neurological symptoms such as shaking and whatnot. I will do a longer, more involved video when I get a chance. There is lots to talk about.

http://www.youtube.com/watch?v=Yp92ERCMZ7A

I got a little crazy with the orientation of the iPhone at the end. I wasn't sure whether I was videoing in portrait or landscape more. My back yard is not completely vertical, although it does sometimes feel as though I live on a cliff. There are 82 steps to the front door. But, the lot is closer to 45 degrees than it is to 90 degrees.

Yes, it's a drag sometimes, but thanks to modern chemistry, I do get a break from what feels like non-stop break dancing at least 6 hours per day. That's better than zero hours, which is what I was getting before starting the Sinemet.

Bob

Portrait of Bob and his meds

I was digging through my supplies the other day and realized that I wanted to visually document the preposterous amount of supplements, prescription drugs, Chinese medicine, homeopathics, needles, syringes, saline bags, and so on that I have in my Lyme-fighting arsenal. Even I was amazed (and depressed about) how many jars, bottles, vials, tubes, bags, and so forth I have purchased over the years, not to mention that my poor liver and kidneys and other body parts have had to assimilate, break down, and excrete these drugs. All this stuff has cost hundreds of dollars, if not thousands. 

I also thought it would be good for my doctors (and any doctors reading this) to get a sense of what a typical chronic-Lyme disease patient has to deal with over time. 

I decided to organize them outdoors, on top of my defunct hot tub. (A friend Photoshop'ed in the sky, replacing the dead plants and drab redwood wall). Looks kind of goofy, but I did the setup of all the bottles and whatnot there simply because there was good light for a photo, and I don't have another flat surface to put everything on.

It's a full-time job just remembering what to take, and when!

In the lower photo you can see the general layout. The glass vials in the middle are empty Ceftriaxone (AKA Rocephin, an antibiotic) IV bottles, along with tiny ones that were filled with glutathione and phosphatidyl choline, which I take IV to help the liver do its detox job better.  

Rx drugs are on the right, Chinese herbs are just behind the Rocephin bottles and in the little plastic (front, left). Homeopathics are in the dropper bottles behind the Chinese herbs. Just about everything else are supplements (aminos, vitamins, and various herbs, heavy-metal binders, etc). My IV pole with some Rocephin in the bag/line is standing next to me. 

On the back, right are glass vials of seawater from some supposedly-magical source off the coast of France. A homeopath/naturopath sold me those. It's called Quinton water. Supposedly good JuJu in that water, but I didn't notice anything. You have to break off the tip of a glass vial in order to get the Quinton water out. A tad scarey the first couple of times. I was afraid I'd cut myself, not to mention my fear of drinking little glass shards. In the back, middle, are heparin and saline flushes (pre-loaded single-use syringes). You go through a lot of those if you have a PICC or a Port. 

I had forgotten about some of these chapters of my treatment. I'd rather not remember, actually. There have been so many!

A bit more of a close-up to make things more visible.

Mysterious skin shedding

Last weekend I caught some rays down at the pool. I had been taking Rifampin for about a week at this point. I noticed after the pool that I had a weird-looking sunburn even after relatively little exposure. A few days later I had this skin peeling/sloughing situation you see here, only on my arms and legs. Nothing on my back or front torso, which were also exposed to the sun for the same amount of time. 

If you have had skin peeling during Rifampin usage, please comment.

Shin

Upper arm

Forearm

Personal video update May 25, 2010

Here's my video update. I haven't done one for a while. 

http://www.youtube.com/watch?v=OyyxmV-smLE

-Bob

Personal video update 1-11-2012

Here's the latest video update on my condition:

http://www.youtube.com/watch?v=KDQT2hxutD0

Personal Check-In Nov 8, 2011

http://www.youtube.com/watch?v=zv2E-Ypq-vM

Personal update 9-27-11

http://www.youtube.com/watch?v=Hu_xj1U9ft0
Here's my latest video update.

Personal video update

First video posting from iPad 2:
http://www.youtube.com/watch?v=1AO78VbenOE
Bob

Personal Update 8-17-11

Letter to my LLMD today:

Hi Dr. ________

Thought I should report to you that I am in major pain. Like number 10 on a scale of 10 in my shoulder, the shoulder on the side where I have the stiffness and tremors. Also pain has increased in the rt arm, which is much stiffer than before. 

To treat the back, I've been to the chiropractor twice and the Feldenkrais practitioner once, and then to my GP yesterday, all for nought, thus far. The pain is between the rt shoulder blade and the spine. This has been going on for over one week now. Everyone seems to think it's a spasm in a muscle, resulting from a strain. But I think it's the parkinsonism which is stiffening the shoulder as well as the arm at this point. What muscle wouldn't freak out from being contracted all day? 

I'm taking ibuprofen a lot and also hydrocodone apap 5 500 that Dr Kurn (PD doc) prescribed a while back. But I am pretty incapacitated and the pain is really terrible. Some relief from resting shoulder on a heating pad in bed. If I do anything more than that with the arm I'm in trouble. 

I'm not sure what to do about the IVs. I don't know if this has been getting worse because of die off/Herx/oxidative damage from doing so many antibiotics and antiviral antifungal stuff all at the same time (remember, I am doing IV ceftriaxone, IV Flagyl, azithromycin, valacyclovir, and Mepron all at once). I stopped everything yesterday. Nothing has gotten better so far. It's about the same if not worse. The foot tremors are also nonstop. 

The pain from the shoulder is radiating down the arm and up the neck a bit. My GP, Nicola Hanchock, ruled out nerve compression yesterday. We are trying to get me into an appointment with the Parkinson's doc Matthew Arnold here in Berkeley to see what he has to say, bcuz it seems as though the parkinsonism has progressed rapidly.

I just ran out of IV Wellness glutathione but I reordered some and I should have it in a couple of days. Other Parkinson's symptoms such as loss of balance, difficulty initiating movement and so forth have also increased pretty quickly. It's rather frightening, but mostly the pain is what is getting to me. Maybe we should have a phone conversation.

The old chest rash around the port has revisited but is about a 2 on a scale of 10. And my swollen red earlobes thing has happened again. Skin is now peeling off them, the swelling lasted 5 days. Now waning. Still swollen and red but less so.   

Bob