Friday, April 29, 2011

"Under our Skin" showing on PBS

pbs_logo1Finally, Under Our Skin will be seen on TV, reaching millions of viewers! Starting this month, Lyme Disease Awareness Month, a slimmed-down, updated version will be shown on select PBS stations across the country. Thanks to viewer calls and emails, more and more PBS affiliates are picking up the show. Stations in Virginia, Pennsylvania, Oregon and Miami are leading the pack with broadcasts on May 1, with scores of other stations following. Broadcasts will continue throughout the summer and beyond. Check the current schedule of broadcasts; if you don't see your local PBS station listed, feel free to contact them, urging that they program the film if they haven't already.

Here's the schedule:

Sunday, April 24, 2011

Sleepless in Berkeley

There is something about Lyme that is particularly infuriating: It messes with your head and your heart. Just like Love. After 2 hours of sleep, I just woke up with not only trembling in my chest that is running at about 8 Hz (the same as my tremors elsewhere, such as feet and right arm), but with a high pulse (83). Well, high for me. At first I thought vaguely, "Oh, you're ok. This is normal. True, you could barely eat dinner tonight, trying to coordinate your arms, and you had trouble standing upright in the shower at the gym without falling over, almost froze like a block of concrete staring at the bed tonight trying to remember how to get in it, or remember how to brush your teeth, but it's nothing. Roll over and go back to sleep. Ok. Now, how do I roll over, again?" For anyone with neuro Lyme or with Parkinson's, these experiences are common. This is everyday reality. The part that makes you feel insane is wondering a) whether it's normal, and b) if it will ever be different, will I ever feel 'right' again?

You have to remember, 'sleep' for me already means something different than it does for the average Joe. First, I put in a sleep-apnea oral appliance that looks like a double retainer, sort of like what you get after the orthodontist takes off your braces, only one for the top teeth and one for the bottom, tied together with a steel pin. The object of this device is to push the jaw (technically called the 'mandible') out, in order to prevent the tongue from falling back into the air passage and stopping me from breathing. Then, to prevent me from breathing through my mouth (I'm what they call a 'mouth breather'), I have to tape my lips together with something. I use 3M Micropore tape because it's for medical purposes and hurts only a little to remove in the morning. Then I put in foam earplugs, because I sleep so lightly that even raindrops on the window will awaken me (as they just did). Then an eye shade because ditto, for light. After all that and 6mg of Melatonin, I hit the hay. And then I pray I'll be able to sleep.

An important factor of successful or even semi-successful sleep is that I start in a good position. You're probably thinking "Oh, come on Bob, this is true for everybody, including me." But what you don't know is, I have to pick a perfect position because I'm not going to move during the night. Not because I don't want to, but just because I don't. I don't know why, but this is true for people with Parkinson's disease, too. They just don't know how to move while sleeping, apparently. So I will wake up in the same position I went to sleep in. If I'm a little bit off, such as my back is out of alignment, I will have a sore back the next day. Or if the pillow is under my head in the wrong way, it's going to be that way the whole night. I might have a sore neck the next day.

It's also true that for me, and for a typical Parkinson's patients, we don't know how to turn over even when we are awake. Or semi awake. It's almost impossible for me to turn over in bed or to change my position. It's a combination of lack of strength and lack of coordination. It's a little bit like trying to find a word that you can't quite remember. I used to know how to turn over in bed. I used to know how to hold my fork and eat a piece of steak, and how to cut it. But now I can't seem to remember how to do either.

And no, according to brain scans (I've had four), I have not had a stroke. I do have a half dozen small holes in my brain but they are no bigger than the average holes in anyone's brain. So what used to be simple pleasures like this become sort of brainteasers like playing sudoku or doing a crossword puzzle, only infuriating, non-optional, and low on my entertainment scale. I have to remember mechanically, or I have to figure it out on the fly: "Now let's see, how would I get that steak into my mouth if I were human being who had to pick up this fork and hold it and stab the steak and then aim it towards my mouth?" It ends up looking a little awkward, at best. And, it feels very weird, indeed.

This is what Lyme patients have to go through with almost everything they do, and it's called having "brain fog". On a good day, you sense it as just being sort of weird. You feel like molasses in January. You're stuck, you freeze, you forget what you are doing, you even can't remember how to move to pick up your pen. You can't tie your shoe. On a bad day, it's infuriating and you feel rage. "Why me?", one asks. How long will it be this way? Or you just feel rage, with no question at all. It's just anger. It's called "Lyme rage." There is speculation in the medical community that Lyme rage is caused by certain co-infections of Lyme disease such as Babesia or Bartonella. It's probably true. When I was sickest, about nine years ago, I had so much Lyme rage , It was unbelievable. I had no idea about Lyme rage or what it was. All I knew was that I went from being a normal person to wanting to strangle even my best friends. But it's not as bad now as it was then.

But I'm straying from my point. My point was about the ritual I have to go through to go to sleep at night. So you can imagine what it looks like, my head has earplugs, taped lips, eye mask and I get into bed, lie flat on my back and straighten myself out totally so that I'm as ergonomically correct as possible. Then I turn off the lights -- if I can reach the lamp, which often I cannot.

You're probably wondering or asking yourself "Well, you can type this in the middle of the night, can't you?" Actually, I'm sitting here like a shaking rock, talking into my iPad. The iPad is typing what I say through the magic of the Dragon Dictation application that is running on it. All I can do is tap the screen and talk. I often tap two or three times when I mean to tap once. My right arm is banging against my body at that telltale 8 cps speed and is rigid. I'm sitting crosslegged on my bed at 4:14 in the morning, talking into a computer, trying to let the world know that other people are not alone if they're having in an experience like this. This is the best thing I can think of to do right now. Other people in the neighborhood are blissfully asleep in their houses, I presume. Maybe they are dreaming. Maybe they are dreaming happy dreams. Personally, I can't remember the last time I had a happy dream. A couple of nights ago I had a dream where, like Persephone, I was trapped underground under the crusty surface shell of the earth, agitatedly wandering about, not being able to find a way out. Mostly though, I don't remember my dreams. Maybe that's a good thing.

Getting back to the fact that I woke up at an expected time, I was aware that I was in a vague state of confusion about what I should do. After a minute or so, I realized I should take my pulse because I was feeling a very intense feeling in my heart. Trembling. Sure enough, even though what I was feeling in my chest was the telltale 8 cps shaking, my pulse was actually high. You see, except for one nurse who heard the trembling in my heart once in her stethoscope, no EKG tests have been able to detect it. It's just something that I feel. People can see the tremor in my hand or in my feet, but they cannot seem to detect it in my heart. I was surprised when the nurse heard something and said "Hey, what's this trembling sound I hear in my stethoscope?" I said "Denise, even the EKG could not detect that. They did not believe me when I told them that I feel it all the time."

In any case, I decided I should turn on the light, get up, go upstairs, get my blood pressure meter, and my thermometer and take my vitals.

What did I find? The usual. Another reason to wonder if I'm crazy or not. Blood pressure: 103/72. Pulse: 83. Pretty normal. Well, 83 is fast for sleeping. It's not out of line if you're having a dream. But, when lying quietly, it should not be 83. My resting pulse used to be 65 or so. Sometimes even slower. But now it is quite quick, almost all of the time. Between 72 and 90. And I can't do something that most people can do which is called "make yourself comfortable." I used to be very comfortable almost all of the time. And why not? After 35 years of practicing meditation and other relaxation techniques, I certainly knew how to "make myself comfortable." But now, no position is comfortable. How can you be comfortable when your muscles jam up like a rock and your toes are shaking and cramping and your stomach is tight and your heart is pounding? And your hand turns into a claw when you're trying to eat an enchilada? Or just hold a regular expression on your face while talking to someone who doesn't know that internally you're shaking like you're afraid you're about to die or that you might actually die any minute, or that you might fall apart right there in the Nation's hamburger store on Main Street in Alameda, while you're eating a piece of Apple pie and talking about religion with a friend? And that's the same feeling I had when I woke up an hour and a half ago, before I started writing this. Am I going to die now?

They say that the cause of post-traumatic stress disorder (PTSD) is going through a traumatic experience like an explosion in a war zone. Something dramatic. But another causative factor of PTSD is low-grade, continual, repeated stress. Like being an incest survivor, or a Holocaust survivor or even surviving the oppression of a stressful workplace. I had a client when I was a psychotherapist who had a job as a TSA operator employee whom I believe is suffering from post-traumatic stress disorder as a result of job pressures. She suffered on the job, constantly worrying whether someone who just walked by her was carrying a bomb. Or might be. She wasn't allowed to go to the bathroom for fear that someone might walk by who was the next terrorist and blow up a plane, and she'd be responsible. Well, it's about like that. Waking up every morning wondering if I am going to be much worse today, how the disease is progressing, how much brain damage is permanent, how much is temporary? Questions like that are everyday realities for anyone with a chronic disease. I'm not claiming to be unique. But having two diseases with unknown causes and unknown cures, and especially having one that the medical system claims almost doesn't even exist, and that the insurance system won't pay for is pretty crazy making.

And then there are the financial worries. I have already spent the better part of my retirement savings trying to figure out a cure for this disease that continues to worsen and erode my sense of self confidence. (I was very diligent about contributions to my SEP-IRA while I was gainfully employed, often making the maximum annual contributions.) I have spent nine years being out of work, seeing doctors, making the best out of life while being sick, trying to reinvent myself, going back to school and getting a masters degree in psychology, thinking it's all psychological (which it is not - I underwent years of psychotherapy and even earned a masters degree in the field, just to be sure), and trying to be a trooper. I have pretty much given up being in a relationship because that is just about impossible with a disease like this. Well, at least for a single person diving into the dating scene. It's kind of like trying to buy health insurance with a preexisting condition. It's a tough sell. I envy the people with Lyme disease who have a mate to help them through this. Ditto that for Parkinson's. There's nothing like going on a first date for "dinner and a movie" where you can can't eat, and you can barely sit still in the movie theater.

Unless you're going shopping for an partner in a chronic disease support group, it's kind of awkward starting your first date saying, "Oh, me? Well I have this weird disease called Lyme disease that can look like between 200 and 300 different kinds of diseases", or "I have Parkinson's disease which is a degenerative neurological disorder that is sometimes fatal but always degenerative and there is no known cure." It's not exactly a conversation starter. But if you have a party with too many people in your house and you'd like to empty the room, it's a pretty good tactic.

Well, sorry, I didn't mean to make this entry sound like a pity party. But I guess I am feeling pretty miserable tonight. I just took a Valium, so I might get some sleep after all. In the meantime, I promise to make the tone of the next entry more upbeat. There have been some bright spots in all this, and I have been thinking about those more lately. I'll try to elaborate when I'm feeling a little bit more positive.

Signing off.

Your Lyme disease correspondent from the field,
Bob Cowart

Lyme update, porta-cath, infection?

It has been a crazy week. Maybe I should say a crazy couple of weeks, because it's been a while since I reported in about the state of my health. Numerous things have occurred. In general, sleep has gotten worse. Tremors have gotten worse, especially in my feet (in which I am beginning to get vassiculations) and overall general state of health has declined further. I am working feverishly with my neurologist and my Lyme disease doctor to prevent sliding further. There was one bright spot last week when I had almost a full day with no tremor, plenty of energy, incredible mental focus, and I was very productive. So this gives me some hope.

As mentioned two posts ago, of the more recent findings is from a test that looks for a genetic predisposition to blood clotting. This was performed because I had a port implanted surgically into my chest to allow for easy intravenous treatment for Lyme disease using an antibiotic called ceftriaxone. As I said before, the genetic factor is called Leiden factor 5. According to the hematologist I saw this week, contrary to what my Lyme doc, neurologist, and the report from the blood lab said, it only increases my chances of having a stroke somewhat. My Lyme doc is worried that since I just had surgery performed near a vein that leads from the brain or is close to the brain, there is some concern that I could be in jeopardy of having a stroke unless I start taking orally, or injecting subcutaneously, a blood thinner such as Coumadin. I had already started on Coumadin a week before getting a hemo appointment, but the hemotologist said it could actually *cause* a stroke. A second hemo, who is also a LLMD (Lyme-literate MD) disagrees and wants me on sub-q Lovenox. What do you do when two specialists disagree?

But I am getting ahead of myself. Let's go back to the getting the port implanted. I had had a PICC line in my arm last time I did intravenous antibiotics for Lyme disease. That was about a year ago. That was annoying because it prevented me from easily taking showers or going swimming. The under the skin, subcutaneous, port I had installed two or three weeks ago allows for the removal of the needle that pierces the skin to go into the port. When the needle is removed, you have essentially a watertight seal. This allows for easy bathing and swimming. I have a couple of friends in the local support group who have two different kinds of ports. I had to decide between one called a Groshung and the other kind (called a porta-cath) which is implanted totally under your skin. The Groshung is one that comes out of the skin very much like a PICC line in the upper arm, but it's in the chest instead, with a small tube coming out from near the clavicle. Here's some information on the website about the different kinds of ports. The ports are typically used for chemotherapy, but people on long-term antibiotic treatment for Lyme disease use them too.

Types of Chemotherapy Ports
Chemotherapy drugs, administered to treat cancer, can cause scarring and collapse of veins, making it hard to start intravenous lines. Ports buried partially or completely under the skin connect to catheters that terminate in large veins, reducing the risk of scarring. Ports, which can last years, are used to administer more than one medication at a time, and can also be used for blood draws. Once placed, they need little care; some must be flushed regularly, and need to be kept clean to decrease the risk of infection.

Tunneled ports are inserted as an outpatient procedure into the chest beneath the subcutaneous tissue, which lies under the skin. The port is then fed into the superior vena cava, a large vein just above the entrance to the right atrium of the heart, according to the Cleveland Clinic Cancer Center. Accessible ports, usually more than one, used to draw blood and administer medications, hang outside the chest. The catheter is kept in place by scar tissue that forms around it. Tunneled venous catheters can stay in place for years. Tunneled lines need to be flushed on a regular basis so they don't clot, and need to be kept scrupulously clean to avoid infection. Commonly used tunneled ports include Broviac, Groshung and Hickman catheters.

Implanted ports are implanted completely under the skin; to access them, a needle pierces the skin. A small lump is visible under the skin. Implantable ports are surgically placed directly into the superior vena cava. The middle section of the catheter is soft so it can be pierced by an L-shaped needle called a Huber needle that lies flat against the skin after the port is accessed. Implantable ports need to be flushed once a month if not being used, the American Cancer Society says. Porta-cath, Infusaport and and Medi-port are a few available implantable ports.

So, what I got is an implanted type, a porta-cath. The surgery was pretty expensive as I had to pay the deductible for my insurance policy, which is $1000. It took about two hours total from the time I arrived to the time finished, maybe three hours. The anesthesiologist gave me something she called "twilight". It was a general anesthesia, but not a total knockout. However, I remembered absolutely nothing, as though no time and passed at all, and I had no pain whatsoever. That was, until the painkiller wore off. Here's what I looked like shortly after the surgery , after I removed the bandage and the needle:

A few days after surgical installation of Porta-Cath
You can see the incision where the catheter was inserted.  They make a pocket under the skin.  Then, the line from the catheter goes upward, toward the clavicle, and then into the subclavian vein, feeding  over to the superior vena cava, just above the heart.  
The next couple of weeks were touch and go. The needle was inserted already after surgery, so I could begin getting the intravenous antibiotics in. That is, if I had actually had possession of them. However, I did not. My insurance company, Blue Shield of California, had refused to pay for my ceftriaxone this time around. They had paid without any complaint for six months of treatment last year. This time they refused on grounds that I had already tried it for six months without success. This is unfortunate, and the result of a political debate going on between different groups of medical doctors who claim to be Lyme disease experts on both sides. One group is the IDSA (Infectious Diseases Society of America) and the other is ILADS (International Lyme and Associated Diseases Society). So what I am left with is sourcing the ceftriaxone from whatever places I can scrounge it. A couple people I know had extra left over, so they gave it to me. I have to mix it with saline solution and then put it into saline bags and then do the drip myself. I am learning how to insert the needle into the port, put on the bandage, and so forth by myself.
Anyway, so I was happily doing about four hours a day of ceftriaxone drip when, after about two weeks, I noticed that under the bandage (which is see-through) I had red bumps appearing on my skin
Something started to look angry under the bandage
I decided to remove the bandage and examine further. I wasn't sure whether it was a skin infection or dermatitis, or something even more serious. I took photographs and sent them to my doctor who was somewhat alarmed, and so I had a couple of other people look at it. No one could quite figure out whether it was contact dermatitis, shingles, or cellulitis. Cellulitis is pretty serious, and can lead to even worse conditions such as sepsis. After a couple of more days I ended up seeing the surgeon who implanted the port in the first place. He said that he thought it was just contact dermatitis and to take off all bandages, remove the needle, and let the skin heal by itself. 
Ouch! This really hurt and itched!
It got pretty bad, and was painful, as you can see here. I was to keep it dry and wash it with soap and water occasionally. Finally, about a week later, which is today, It is just about back to normal. The problem turned out to be a skin reaction to Tegaderm, a 3M adhesive that is used on the clear bandage you see in the first photo of the red spots, above. It seems I am allergic to that adhesive! If this happens to you, you probably have the same allergy. The solution is to use another type of bandage. I finally found one that work for me. It's called the IV 3000, made by Smith & Nephew. Not cheap,  but I found them at a local medical supply store and they saved the day and are quite water tight for showering. Very thin and comfortable, too. In the photo below, you can see the valve where I plug the IV drip line in (has a red cap on it), taped to my chest just for storage purposes when I am not infusing. The black butterfly item is part of the Huber needle, which you fold back and pinch between thumb and index finger for inserting and removing the needle.
Better bandage, the Smith & Nephew IV 3000