Doctors & Medical


Smells Like Lyme

Saturday, April 5, 2008 1 Comment by Chronic Triathlete

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Seeing a new doctor now. Dr. Steven Meed here in NYC. I initially went to see him after speaking with some people about the Marshall Protocol. He’s worked with a few people on the MP and seen considerable success. However, as I was recanting my story of the last 6 months he said, "Smells like Lyme" and inquired about any Lyme testing.

I was tested by my my primary physician very early on in the process using an ELISA test. It was negative, but I’ve since learned far more than I ever wanted to know about Lyme Disease and the issues around testing for it. I’m not going to go into all of that now, but let’s just say it’s a very difficult disease to test for. This is compounded by the fact that many doctors (like my primary care guy) aren’t aware of these challenges.

In an attempt to get to the bottom of it all a couple of weeks ago I requested a kit from a special lab in California called IGenex who are considered pioneers in the advancement of Lyme testing. I did the testing through Dr. Cooke at Patients Medical (you can order the kit to your house, but a doctor has to send the kit in and receive the results). I’m still waiting for the results. I expect them this Tuesday.

Anyway… Dr. Meed, who I later found out via Google has had Lyme 4 times in his life, seems to think that it’s a strong possibility that Lyme is my problem. While I’m not thrilled with this idea, I am happy at the possibility of putting a name to my illness. He gave me a month’s supply of Doxycycline — which I’ve been on for 5 days now — but I will certainly need to be taking it for many more months if Lyme is indeed what I have.

One of the markers that doctors use for a clinical diagnosis for Lyme is a Jarisch-Herxheimer or "herx" reaction. Herxing occurs when large quantities of toxins are released into the body as the Lyme bacteria are killed off by the Doxycycline. It generally results in a upswing of your symptoms — muscle pain, chills, low grade fever, headaches. The first 2 days I was on the Doxy I didn’t feel much in the way of a Herx, so I decided to experiment a little. The doctor told me to take 1 (100mg) pill twice a day (morning and evening) for 5 days and then switch to 1 pill in the morning and 2 at night. On the 3rd day I jumped ahead to the second dose level and started feeling pretty bad almost right away. The morning pill give me mild aches all over and turns up the volume slightly on my brain fog, but the evening dose make me feel like something very heavy ran over me.

Still, I’m trying very hard not to get my hopes up with anything. I’ll see what Dr. Cooke says on Tuesday with my IGenex test and go from there. Dr. Meed also requested a Lyme test be sent to Stony Brook (another leading Lyme lab). Results from them in 2 weeks.

FFC Disfunction

Sunday, March 30, 2008 No Comments by Chronic Triathlete

I’ve been to the Fibromyalgia & Fatigue Clinic in Norwalk, CT twice now. The first time was for an introductory visit during which they took 31 vials of blood. Then, a month later (last week) to get the results of the tests they ran. I have to give them props for being very professional and nice. Still, I don’t think I’m going to continue going.

There are several reasons. Probably the most important one is that it’s a three hour round trip drive for me which essentially means I have to take the entire day off from work. Beyond that, the fact that nada zero, none of the bill is covered under my insurance. The vast majority of the labs are covered, but the office visit it out of pocket as are their pricey supplements. I understand that I can submit the office bill to my insurance for reimbursement, but I’ve yet to see a check.

Another reason is the picture below.

Ffc_dysfunction_3

The doctor pulled this out during my first visit as a tool to help me understand my illness. At first I was excited to have a picture to look at. I’m a graphic designer and an exceedingly dominant visual learner. To have a diagram to look at was great. I’ve been using diagrams to help me understand what’s going on with my body and I felt like she was speaking my language.

But then I really tried to make sense of the whole thing and I started getting mad. Mad that I was (again) wasting my time with another doctor. Here I am sitting across the table from a someone who considers herself a CFS expert and this is the best she can do to help me understand my illness. I mean, what the hell is that??! Looks like a hormonal hairball.

So, yeah… I’m done with the FCC. I do think that they probably help a lot of people. I spent some time talking to the staff and trying to get the "real story" when the doctor wasn’t around. They all said that  they do see people "improve". I believe it too, but it’s not a place for me. I’ve got my own plan (more on that probably next post) and it seems like a really great fit, both mentally and physically.

Finally, Someone I Can Relate To

Thursday, March 13, 2008 No Comments by Chronic Triathlete

Paulbike1
Google is my best friend these days. If it weren’t for that site I think I’d have jumped off something very high by now. It’s amazing what you can find out there with it (try the advanced search functionality sometime). For example, over the weekend I was Googling for info related to athletes, cyclists, runners, triathletes, etc. with CFS. A lot of what I was finding was stuff I had seen before, but after filtering it via the advanced search I came across this interview on the site Bacteriality.com with Paul Albert, a competitive cyclist who’s recovering from CFS via the Marshall Protocol.

I couldn’t believe that I hadn’t come across it in previous search sessions. It was exactly what I had been looking for. I was excited to read it and even more excited to learn about the successful turn around his health has made on the Marshall Protocol treatment. I spent some more time clicking around the site and decided to reach out the site’s author, Amy Proal. I gave Amy the run down of my situation, sent her a link to this blog and basically asked her for any info or help she might be able to pass along. She got back to me very quickly with a doctor to see in NYC and the number for Paul, who just so happens to be her boyfriend.

I called Paul the other night and we chatted for about an hour. He shared with me his experiences on the Marshall Protocol and it really piqued my interest. I have a bunch of outstanding lab work that I’m waiting to get back from a couple of different doctors. I don’t want to really do anything significant before I see it all, but I’m seriously considering trying the MP. It seems that for the people who are able to stick it out through the strict and very lengthy treatment the recovery rate is excellent.

The MP does have it’s critics and I’m certainly going to try and examine it from all angles, but right now, it’s my leading choice for treatment. I’ll post more as I figure out the pieces to the puzzle.

Have A Heart, Doc.

Monday, March 10, 2008 No Comments by Chronic Triathlete

Heart_diagram_1In my search to find to someone see about my condition I’ve really wanted to find a doctor that either treats athletes or is a himself/herself a competitive athlete. It’s been my experience that since doctors are use to treating the average American — overweight, out of shape and generally out of touch with his/her body — when they see a exceedingly fit person they don’t always connect all the dots as they should.

For example, this past week I saw Dr. Derek Enlander here in NYC. Dr. Enlander is considered an expert in the world of CFS and has treated hundreds of people suffering with the illness. Like most docs he has his own bend on it and he’s developed his own treatment protocol. As part of his initial testing, he performed what’s called an Impedance Cardiograph test on me. It’s a simple test that measures the volumetric chances of blood in your thoracic cavity during the cardiac cycle. Dr. Enlander is one of only four doctors in the entire state of New York to have one of these machines. Apparently he’s very proud of this as he mentioned it to me at least three times.

The test is similar to an EKG. I got a bunch of, what I’ve always called, "metal nipples" stuck to my chest and neck (I’m sure there’s a medical term for them, but I don’t know it.) To each "nipple" gets clipped a wire lead — maybe 8 in total. Each lead runs into a little box the size of a toaster which kept reminding me that I was alive with its report of my heart beat… beep…. beep… beep. During the test the toaster takes readings of my blood flow in different positions. To start, I was laying down. Then they made me sit up. Finally, I had to stand. Each segment took maybe 60 seconds. Whole process was entirely painless — at least until I had to pull all the nipple stickers off my chest.

The test results get spit out of the toaster in on a stream of paper not unlike a cash register receipt. Dr. Enlander came in to review the results with me.

"What kind of athletics did you say you do again?" he asked looking at my receipt.

"Triathlons and long distance running. Why?" I replied.

Making a face and squinting at the paper he says, "Well, you’re in pretty good shape. You did really well. In fact, you’re above normal."

"Normal for who?" I asked.

"Normal for, you know, a normal person." he vaguely answered. "Your hemodynamics are fine, but your blood pressure and heart rate are a little low.

It’s right here that I started getting annoyed. Like a lot of athletes, since I became serious about my training, particularly cycling, my blood pressure has been on the very low end of normal. Usually somewhere in the 90/60 to 100/70 range. Additionally, my resting heart rate has decreased as well.

"What’s my heart rate?" I asked him.

"58." He says "But people with CFS often have low heart rates."

"Well, my resting heart rate about six months ago was 52. What’s that mean?"

"Oh…" he says looking around the examining room "probably that you just not Mr. Triathlete anymore."

"Really?! Oh thanks for reminding me, ya jerk!" I didn’t say out loud.

It’s this type of exchange that keeps leading me down the path of trying to find a doctor that treats athletes. The whole HR and BP issue is a simple fact with people who are fit. A sports-friendly doctor would have known this. Additionally, a doctor who’s familiar with the mind of an athlete never would have made a comment to remind me of my deconditioning. I don’t need to be reminded that I’m no longer the super fit person I was 6 months ago. He probably thought it was funny, but to me it just struck of those people that roll their eyes and smirk when you tell them you’re a triathlete. I certainly wasn’t laughing.

31 Vials of Blood

Monday, March 3, 2008 No Comments by Chronic Triathlete

31_vials_of_bloodI had my appointment at the Fibromyalgia & Fatigue Clinic (FFC) in Norwalk, CT on Thursday 02.28.08. Interesting experience.

Dr. Maria DiGiovanni is the physician there. I liked her and found her to be a relatively warm person — at least far as doctors go. She sat with me for 45 minutes as I rattled off my story and told her about myself. As I talked she interjected from time to time with information on what’s happening biologically with the different symptoms I described. Some of it was a little technical and over my head, but she had a couple of visual aids that helped me understand. During a sidebar on the thyroid she spontaneously drew a picture illustrating why people with CFS often have issues with it. It helped.

Later, she gave me a general overview of what CFS means in the body (very similar to this article). She said that at the FCC they focus on Dr. Jacob Teitelbaum’s protocol and believe that CFS is caused by a hypothalamic dysfunction. Through his studies he’s come to the opinion that the hypothalamus, being the master switch for the entire endocrine system, suffers a "short circuit" or "blow out" during periods of physical or emotional stress. This could be life stress (job, work, family, etc.) or a physical one (illness, surgery, car accident, etc.). This blow out causes everything to be thrown off and sends the body into a chemical chain reaction resulting in CFS and Fibromyalgia.

I’m simplifying it, but what Dr. D said all pretty much fit with what I’ve read. So I decided to try out her suggestions. She gave me the following prescriptions and supplements:

All of this seemed well and good. I’m a little skeptical of all the supplements, but I’ll try them out and see what happens.

Then she sent me off to the blood guy. He was a nice and comfortably chatty man. As he got me to roll up my sleeve and applied the rubber band tourniquet he pulls out this tray with an entire rack of vials on it.

"Are ya ready for this?" he asks me.

"All of them?!" I reply.

Smearing a slightly sadistic smile on his face he says, "Yep."

31 one vials of blood later I felt like medieval patients must have back when the barber put the leeches on them. Luckily I decided to try one of the FFC’s vitamin IVs so I had an hour to sit around in the LazyBoy, listen to my iPod and snack on free crackers before getting in the car to drive back to Brooklyn. In the chair is where I took the picture with my iPhone.

So, all in all, it was a useful and worthwhile trip. I’m taking the supplements and the pharma drugs and they seem to be doing something right. The Melatonin is helping me sleep a little better and the Nystatin is having an effect on the Candida (more on that in a later post). I’ll also certainly be getting back the most thorough blood test of my life in a month when I return to see Dr. D again. More news on this as I get it.

Patients Medical – Initial Consultation With Dr. Cooke

Tuesday, February 12, 2008 No Comments by Chronic Triathlete

Went to Patient Medical here in NYC today and saw Dr. Claudia Cooke. This was my first venture into the word of non-traditional or "complimentary medicine". Even before all of this started I’d always gone to doctors who focused on Western medicine. Not that I had anything against natural or alternative methods. It’s just that I’ve been lucky enough in the past to be very healthy. Or at least have things that had clear and  simple solutions.

I tried hard to walk in with an open mind, however I still couldn’t help but be a little wary. The waterfall behind the receptionist, bamboo plants in every other corner, the shelves of supplements. While it all felt different (in a good way) from my regular doctor’s cold and impersonal office, I was still questioning if I was wasting my time. But I figured at this point I’ll do just about anything to feel better… what the hell.

My first impression was that the office was completely screwed up. I won’t get into this too much because I really got the feeling that this is not the norm, but there was some sort of scheduling mix up (not with me, but with someone else and a presentation by a supplier) that totally threw everything off for the entire staff. I ended up being there for almost 4 hours for what was supposed to be a 1 1/2 hour appointment. Everyone was very apologetic. The manager came by 3 or 4 times to check on me and he even offered to go out and get me lunch while they took my blood. Still, it made for a very long day and I ended up missing an entire day of work where I was only expecting to miss a half. Luckily my wife had come with me and we used the time to catch up on some stuff we needed to talk about and just generally spend time together which has been tough lately.

Finally, after giving about 12 vials of blood and being subjected to a "thyroid challenge" (which sucked a lot), I got around to meeting with Dr. Cooke. She took both my wife and I into her office and gave us a brief and slightly formal introduction to her experience, background and angle on things. It only lasted  10 minutes, but I found it really helpful since, honestly, I didn’t even really know what kind of doctor she was when I walked in. From there, she had me go through my story and give some bigger picture health background. She even asked my wife for her perspective on what’s happened to me, my moods, appetite, overall sense of being. All in all a good initial meeting during which she typed what seemed like copious notes into her computer.

From there we talked about different possibilities for what’s ailing me. She seemed hot on the idea that I might have Lyme Disease. Of course I can’t recall ever having the bullseye rash that’s the clearest indicator of the disease, but I’ve since read that only about 50% of people who get it ever do. My regular doctor, Dr. Kraft, tested me for Lyme early on in the whole process and it was negative. However, I’m pretty sure that it was an ELISA and not a Western Blot so those results are sketchy at best. She also seemed to zero in on the idea of Candida. When I was initially sick I was on a 10 day regiment of Penicillin and she seemed to think that it might have thrown off the balance of good vs. bad bacteria in my body. Perhaps.

So where’d I net out with the meeting? I ended up with the following tests being run and directions for taking a series of supplements. It’s too early to tell about the supplements and I’ll have the results on Monday the 18th.

Tests:

  • CBC
  • Chems
  • Lyme
  • Vitamin & Mineral Panel
  • Check for Candida antibodies

Supplements:

  • Total Body Cleanse (which after 2 days has caused the opposite of it’s intended reaction)
  • One month of Ultra Clear after I’m done with the Body Cleanse
  • One month of Orthobiotic probiotic supplement after I’m done with the Body Cleanse
  • CoEnzyme Q10 400mg at breakfast

In summary… it was definitely helpful to go and a least talk to a doctor who has some new thoughts. And I’ll definitely follow up and with Dr. Cooke and see where things go. I’m planning on balancing her more Naturopathic approach with that of Dr. Enlander who I see in two weeks. Hopefully, with these different opinions, I’ll be able to sort out something to help me recover.

140 Days

Monday, February 11, 2008 No Comments by Chronic Triathlete

Picking up again from my previous post…

When I asked my regular doctor about the possibility of CFS he sort of rolled his eyes, sat back in his chair and called it a "waste basket" diagnosis. He said that "many doctors don’t even believe it exists" and that since there’s "no test for it, it’s impossible to diagnose." From there he proceeded to talk to me about depression and antidepressants.

For anyone who’s dealt with CFS they know this story all too well. Doctors, because they can’t find a test that’s out of order or a boil or a rash or some sort of indicator that you’re sick/hurt, are convinced it’s all in your head or flat out don’t believe that the condition even exists. It’s frustrating beyond words. Here I am, someone who’s got a world of great things going on. I’m healthier than I’ve EVER been, I’ve got a great and adorable 3 year old daughter and a wife who’s beautiful, successful and loving to a fault. Sure, I’ve got my issues with work, family and unfulfilled expectations, but everyone has baggage and crap like this in their lives that brings them down. I’m not depressed. I’ve got something physically wrong with me!

Anyway… fast forwarding a bit… I still have yet to have a doctor officially tell me I have CFS, but I did see my regular doctor write, without any pressure from me, "possible Chronic Fatigue Syndrome" in my chart when I saw him last week. He wants me to come in again this week to do a "full physical", but I’m almost tempted to cancel the appointment. I’ve already done a full physical with him a couple months ago after my 4th or 5th time seeing him. He’s clearly not skilled in working with CFS patients so it’s highly doubtful it’s going to get me anywhere. I’d love for this to be something else, but at this point I can’t foresee a surprise find.

However, I’m not giving up! Part of the reason for possibly skipping the appointment is that I have three upcoming visits with people experienced with CFS sufferers:

Tuesday, 02.11.08
Dr. Claudia Cooke at Patient Medical, New York, NY
The doctors at PM are a multidisciplinary team of medical doctors and health specialists that assess the imbalances that affect your well-being. They identify the root causes of your problems—the hidden sources that conventional medicine may have missed. Then, through targeted treatments that utilize the best of conventional and holistic medicine, provide approaches to overcome and prevent disease in the future.

Thursday, 02.28.08
Fibro & Fatigue Center, Norwalk, CT
FCC specializes in treating the debilitating conditions known as Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue. They offer help through a successfully proven treatment protocol and have treated over 12,000 patients nationwide. Their holistic, integrated and comprehensive approach to treatment of underlying physiological factors is what they say differentiates their approach and ultimate patient success.

Thursday, 03.06.08
Dr. Enlander, New York, NY
From what I’ve read online, Dr. Enlander seems to be one of the leading doctors in the treatment of CFS. There are endless posting about him saying that he’s been able to really help a great deal of people. Many of whom fly in from all corners of the world to meet with him. While I’m very interested in seeing the doctors at the other places, Dr. Enlander is where I think I’m focusing my hope.

I’ll post about my experiences with all of these places. Please feel free to email me if you have any questions about them.

So… getting from 11.24.07 to 02.10.08 took me longer than expected (three posts!), but hopefully what I’ve written will be informative to anyone else who’s in the same spot I am. It’s astounding the lack of information online. I found it really frustrating. It’s essentially taken me a month and a half of dedicated research to even begin to get my head around what might be wrong with me. Perhaps this blog will be helpful for future sufferers in their search to figure out what the hell’s going on with their body.