Doctors & Medical

I mentioned in a previous update that I would post my Bart (or whatever) pix. Here it is.

Bartonella Results from Fry Labs

I’ve looked around the web for other pix of Bart, but didn’t see any that looked like mine. Most show little dots floating around both inside and outside of the cells.

I’m becoming increasingly focused on this aspect of my infection. I recently read this by Dr. Burrascano…

“Indeed, there seems to be a fairly
distinct clinical syndrome when this type of organism is present in the
chronic Lyme patient. However, several aspects of this infection seem
to indicate that this tick-associated strain of Bartonella is different
from that described as “cat scratch disease”.

For example, in
patients who fit the clinical picture, standard Bartonella blood
testing is commonly non-reactive. Furthermore, the usual Bartonella
medications do not work for this- they suppress the symptoms but do not
permanently clear them. For these reasons I like to refer to this as a
“Bartonella-like organism” (BLO), rather than assume it is a more
common species.

Indicators of BLO infection include symptoms
involving the central nervous system that are out of proportion to the
other systemic symptoms of chronic Lyme. There seems to be an increased
irritability to the CNS, with agitation, anxiety, insomnia, and even
seizures, plus symptoms of encephalitis, such as cognitive deficits and
confusion.

Other key symptoms may include gastritis, lower
abdominal pain (mesenteric adenitis), sore soles, especially in the AM,
tender subcutaneous nodules along the extremities, and red rashes.

These
rashes may have the appearance of red streaks like stretch marks that
do not follow skin planes, spider veins, or red papular eruptions.
Lymph nodes may be enlarged and the throat can be sore.

Because
standard Bartonella testing, either by serology or PCR, may not pick up
this BLO, the blood test is very insensitive. Therefore, the diagnosis
is a clinical one, based on the above points.

Also, suspect
infection with BLO in extensively treated Lyme patients who still are
encephalitic, and who never had been treated with a significant course
of specific treatment.”

I find what he says to follow along with my situation. I’ve been treating for a year, have not experienced any dramatic resolution in symptoms, tested negative for Bart via Igenex and have CNS symptoms that are off the charts in relation to any typical Lyme symptoms. In fact, they seem to be the only symptoms I have. The only thing I don’t have from that description is the rash. I’ve never experienced that.

If anyone has any insight into successful Bart treatment, please shoot me an email. I’d love to talk to you about it. I want to gather as much info as I can before my next LLMD appointment in a few weeks. My email address is ChronicTriathlete (at) gmail.com.

Dr. Lyme posted an interesting observation yesterday. Actually, all of his/her posts are interesting. This one's just more interesting than usual, especially since I'm embarking on a Bart hunt.

Speaking of which, I'm on my second dose of Rifampin and my heart is thumping away like John Henry racing the steam hammer. This one may be a bumpy ride.

My neurologist recently ordered that I get a SPECT scan*. This is a common thing for Lyme patients so I thought I'd write up my experiences and results. Here's what it was like to get one. Later I'll post my results.

What's a SPECT scan?
From the Mayo Clinic's website here:

"A single-photon emission computerized tomography (SPECT) scan lets your doctor analyze the function of your internal organs"

"A SPECT scan is a type of nuclear imaging test, which means it uses a
radioactive substance and a special camera to create pictures of your
organs. While imaging tests such as X-rays can show what the structures
inside your body look like, a SPECT scan produces three-dimensional
images that show how your organs work. For instance, a SPECT scan can
show blood flows to your heart or what areas of your brain are more
active or less active"

Sticking your head in the dryer
My SPECT experience was similar to getting an MRI… only quieter. A nurse injected me with some fancy radioactive isotope and then told me to lay down and chill out in a dark room for a bit while it circulated around my body. I took a nap (even though I promised I wouldn't).

After about 20 minutes of relaxing a technician, Ronald, came to get me. He attempted an overly practiced joke by saying how he knew I was next because I was glowing in the dark from all the radiation. I flipped back that I'd hoped he'd be a
hot woman because I could now see through everybody's clothes. Ron and I hit it off pretty well.

This reminds me of a quick sidenote… with all the testing I've had done I've learned to be exceptionally nice to the technical staff and nurses. Often times you get as much info out of them as you do your doctor. It's sort of like being nice to the mailroom guys at a big company. These folks are the ones that make things happen for you, treat them with respect. It'll pay off when you need to squeeze in an appointment at short notice or rush some results.

Back to the test… The machine itself looks like a giant clothes dryer with a plastic camping cot attached to it. Ron had me lay down on the cot, slid my head into the dryer and and threw a lead smock over me. He then ran some quick diagnostic/positioning tests to ensure that the imaging arms were centered perfectly over my head. From there it was just a matter of laying as still as I could for another 20 minutes. The machine buzzes and clicks a little, but nothing like the deafening German techno that comes out of an MRI machine. No ear plugs needed.

It's all very painless and simple. Even the injection was easy. I've had two MRIs in the past and each time have had very slight reactions to the Gladolinium they injected me with. The SPECT chemical is different with no chance of an allergic reaction (so the nurse told me). I didn't feel it at all.

As I was getting up to leave Ron noticed that 65¢ had fallen out of my pants pocket. I told him he could keep it as a tip.

* That's not my SPECT image above. I swiped it off the web.

I went to see Dr. Carolyn Britton at Columbia University Hospital in Manhattan yesterday. Dr. Britton is one of (if not the) top female Neurologists in the country and an entirely pleasant and enjoyable person to spend time with. My LLMD, Dr. R, referred me to her after our last meeting with the idea of settling my worries about other neurological issues — MS, ALS, etc. It was well worth the time (and cash out of my pocket).

Riding the Duc all the way up to 168th street from Brooklyn at 9:00am was a bit of a chore, but I had been in Atlanta for the previous 5 days celebrating Thanksgiving with the family. I welcomed a little adrenaline fix to shake off the remnants of my triptophan hangover. However, about halfway up the Westside Highway I started to question the sense of turning up at the neurologist on a motorcycle while complaining of a foggy brain that that refuses to concentrate. There's no disguising my mode of transport. I can't lock my helmet up to leave it with the bike and my "armored" and reflective Rev'it riding jacket uniquely stands out as a little more than just a winter coat.

When I got there I put the jacket over the helmet and sort of carried it behind me. Upon entering the Doctor's office, I sat opposite her with the desk between us and placed everything on the floor out of site. Luckily she didn't seem to notice. After a quick and random laugh about the economy, she pulled out some note paper and we got down to business. I gave her the medium-length rendition of my story and explained to her why, specifically, I was there to see her.

Since day one I've been about 90% confident in my Lyme diagnosis. I'm very sure that it's what's causing my problems, however, after having many doctors confidently tell me that I had everything from Chronic Fatigue Syndrome to clinical depression to… well, nothing… I take everything they say with a grain of salt. I think that if I had responded more significantly to treatment I would be more sold on it, but after 8 months of moderate improvement on oral antibiotics — improvement that, to me, could just be my body slowly taking care of itself — I started to worry that maybe it's Lyme and/or something else entirely that's causing my problems. And since 90% of my symptoms are neurological in nature, none of candidates on the list of possibilities are very appealing.

After really pressing Dr. R to address my concerns he referred me to Dr. Britton. She's not only a very good neurologist, but she's a neurologist that's also done a lot of work with Lyme patients and athletes (she treated Mike Tyson. Does he have a brain?). Columbia University has a strong, active Lyme research group run by Dr. Brian Fallon and she's participated in some of their studies. I think it's fair to say that she's more than Lyme-friendly, she's Lyme-literate; though she doesn't treat Lyme patients in the specific ways that LLMDs do.

She asked me a whole host of questions about my symptoms and then did a basic neurological examination — hammering on me to test my reflexes, sticking me in various places with the business end of a safety-pin and getting me to push, pull, squeeze, rotate and tap my extremities. All things I had done previously with a different neurologist many months ago before my Lyme diagnosis.

In the middle of all this, she asked me to repeat the following words, "green hat, baseball, world" which I excitedly did. I say excitedly because I had just watched the movie, "Super High Me." It's sort of a spoof on "Super Size Me" except the main character (a stand up comedian known for his voracious pot smoking habit) decided, instead of eating McDonalds for 30 days, to smoke weed all day, every day for 30 days. As part of the "experiment" he goes cold turkey for the 30 days leading up to his binge to "clear his system". During this time he works with a doctor to test and benchmark his physical and mental capacities. During the testing the doctor does a little mini psych test on him. He asks the comedian to repeat 3 words — cucumber, boat, wire — after which he distracts him with other simple questions only to later circle back and ask him to repeat the 3 words again. The comedian is stumped and can't remember them. Click here and skip ahead to 7:40 to see the clip.

So, here I am, getting the same test as some half-assed, stoner comedian and I'm determined to not to fuck it up. Green hat, baseball, world. Green hat, baseball, world. Green hat, baseball, world. Over and over I repeat the words in my head while Dr. Britton distracts me with math questions and touch my finger to my nose tasks. Green hat, baseball, world. I'm obsessed with remembering and sure enough, at the end of the examination, as she's waking out of the room and telling me to put my shoes on she turns to ask, "what were those 3 words again?"

"Green hat, baseball, world." I replied.

And that wasn't the only excitement. After the examination she told me that I'm neurologically fine and that she concurs with Dr. R and feels that pursuing my current treatment for Lyme is the correct course of action. She took some blood to rerun my Lyme titers and she wants me to get a SPECT scan. I'm interested to see how the Lyme test comes out. She said that it's important to run it again after being in treatment to see if/how the bands change. The SPECT will be interesting too. As I understand it, the experience of a SPECT is similar to an MRI in that they inject you with some radioactive isotope and scan your head to see where the blood goes… or more importantly doesn't. Apparently there's a blood flow deficientcy pattern that's representative of Lyme patients. Another indicator that strengthens the diagnosis and can be used as a benchmark for recovery.

Additionally, she said she wants me to try and do some sort of exercise every day. She said that much of my recent depression can be attributed to the change in brain chemistry I've experienced in dropping from a 100-125 mile a week endorphin habit down to 15 or 20. I agree. I always feel better, no matter how shitty I felt before, after a run or a ride.

Unfortunately, she had one piece of bad news. She strongly recommended that I go on IV antibiotics. She said that I could try IM shots, but that for neuro symptoms IV is really the best route for ensuring that enough meds get into the central nervous system. I talked about this with Dr. R at my last meeting with him. I've been really resistant to it, but I don't know if there's another option. The orals don't seem to be cutting it and if IMs aren't going to take me all the way, what's the point.

I see Dr. R on the 16th. We're sure to discuss it fully then. I'll post more about it later.

Just got back from the eye doctor. I’ve been having some serious dry eye issues for the last couple of months so I started seeing a Dr. Jung over near NYU. He’s been treating me for a mild eye infection along with the dryness. All of it typical for Lyme patients.

Anyway… today was to be the last check up with him, but when he started looking at my eyes through the microscope thing he remarked, "Oh, you have a piece of metal embedded in your cornea."

WTF?!

He ended up numbing my eye with some drops and digging the metal out with a little battery powered dremel looking thing. Completely freaked me out. I almost had a panic attack.

Luckily, he said it’s no big deal and that it happens all the time. I rode the motorcycle a lot yesterday and though I always wear glasses I rarely put the visor down when riding around town. It’s just too damn hot this time of the year. I’m sure that’s where I got it.

It was just lucky that I came into see him today as it could have become really irritated and sore. He expects it to heal completely and be fine. I had him email me some of the pix he took. The first is before, the second is after.

I’ve been trying for a few days to write up something compelling and witty about my initial visit with Dr. R. It was by far the most interesting doctor visit I’ve ever had. Sadly, I’m just too busy to sneak it in during work and too tired at the end of the day to bring it out. So, here I’ll just bang out the facts and highlights. Perhaps I’ll follow it up later with some greater insight.

Like I said, my meeting with Dr. R was easily the most interesting visit I’ve ever had with a doctor. He’s on the Upper West Side, about a block from the park, on the ground floor of a whitestone apartment building. First impressions were typical — the waiting room was a little cramped and, from what I could see beyond the receptionist’s desk, the rest of the place looked like standard nuevo-doctor decor. Functional, clean and unremarkable. However, that all changed when the receptionist/nurse led me back to see the doctor.

New Yorkers will be familiar with the brownstone-like arrangement of things — narrow space, long hallway, rooms on either with side high ceilings. Dr. R’s office is in the room all the way at the back. A classic post-war layout. Buildings like this are sometimes blessed with a pleasant backyard space and his office has just that — a quaint tree-shaded deck. The afternoon I was there was a pleasant 72 degrees and the doctor had the windows and door to the outside wide open. As I walked in a comfortable breeze wafted in the smell of flowers, a neighbor’s wind chimes clattered away, birds chirped.

Again, it’s not overly lavish, but having this set up easily makes it the most remarkable doctor’s office I’ve ever visited. In fact, it’s almost anti-doctor in its experience. This is something I thoroughly enjoyed after all of the disinfectant-scented prison-like examining rooms I’ve sat in over the last few months. That’s not to say that Dr. R doesn’t have proper examining rooms. Those are in the side rooms as you come down the hall. He just seems to like to conduct his discussions in more pleasant settings. Doctor, I concur.

Dr. R waved me to his guest chair and we chatted. I’m so use to having 15 minutes to get through 6 months of back story that I jumped right in a started talking a mile a minute. However, after a few minutes I realized that we weren’t in any rush. I actually got the feeling that he would have sat there with me all afternoon if I wanted. The conversation took on the tone of a therapy session with he and I just chatting about different things; even getting sidetracked on a couple of topics. He never cut me off and never tried to speed things up. Something that more or less every doctor has done in the past.

So after probably 30 minutes of me barfing out my story to him he gave me his take on things. In short, he thinks I’m "pre-chronic" but "post-acute". He ended up there because I’ve not been sick that long (7 months when I saw him) yet I have some minor chronic-like symptoms (neurological mostly). He said there’s a chance that what I’m going through now is a reinfection, but he highly doubted it.

Prognosis? Time will tell. He sort of reiterated what I was already thinking in my mind: That it’s unfortunate that it took me this long to catch it, but that I’m very lucky to have caught it when I did. Six months seems to be the general dividing line between easy to treat and more difficult to treat. Dr. Meed started me on Doxycycline and Ceftin right at that point… so fingers crossed.

Dr. R sent me home after about an hour and a half with a bunch of prescriptions for oral antibiotics:

• Azithormycin – 100mg x 2 per day
• Minocycline – 100mg x 2 per day
• Metronidazol (Flagyl) – ???mg x ? per day for 5 days once a month. This drug breaks up the cyst form of Borrelia where the others work on the traditional spirochete form

He also gave me a couple of drugs to test out on my sleep. I’ve been sleeping better than I had been in the past months, but still have a really hard time getting a full nights rest. In fact, I think I’ve slept through the night maybe 5 times in the last 6 months:

• Trazadone

Lastly, he gave me a list of herbal supplements to take, but I’ve yet to muster the energy to go through it and order them. I got so fed up with the supplement route when researching CFS that it’s hard to go back and do that again. I’ll dig through it and post the list in a later update.

All in all it was a promising visit. It felt really good to talk to someone who listens, understands and has a confident opinion and not some vague guess at what might be going on. I have a follow up with him on June 16th so stay tuned for an update on him after that.