Chronic Triathlete

40 Pills A Day

Every Sunday night I set up and organize my pharma and supplement needs for the upcoming week. It's a chore that's getting more and more time consuming and I've really grown to hate it. I use to enjoy the organizational aspect of it. I felt like I was being "proactive" in my recovery and that my attention to detail was all worthwhile. Unfortunately, as the weeks and months have dragged on it's become about as interesting as washing the dishes.

Still, I know that this may be of interest to people so I thought I'd share what goes into my week of 40+ pills a day. Some of this has changed since I took the included photos (and it may change drastically now that I've started seeing a Chinese herbalist), but here's what I'm taking currently.

I always use to equate big pill trays with old people. I feel like my Grandmother when filling this up.

Morning (Just before or an hour after eating)

• Mepron 1tbs
• Zithromax 250mg
• Minocyclin 200mg
• Diflucan 100mg

Lunch (Just before or an hour after eating)

• Basic Preventative x3
• BrainWave Plus x3
• Cordyceps 500mg X2
• Cardio Guard Plus with CoQ10 x3
• Olive Leaf Extract 250 mg x1
• Glutathione 400 x1
• Chlorella 300mg x1
• Primadophilus Bifidus x1
• Sacchromyces Boulardii x1
• Culturelle w/ Lactobacilius x1

Afternoon (Snack-time between lunch and dinner)

• Samento 13 drops
• GSE 13 drops

Evening (Couple hours after dinner)

• Mepron 1tbs
• Zithromax 250mg
• Minocyclin 200mg
• Diflucan 100mg

Late Night (Same as above list. I always wake up at some point in the evening so I use the opportunity to take some supplements)

• Basic Preventative x3
• BrainWave Plus x3
• Cordyceps 500mg X2
• CoQ10 200mg x2
• Olive Leaf Extract 250 mg x1
• Glutathione 400 x1
• Chlorella 300mg x1
• Primadophilus Bifidus x1
• Sacchromyces Boulardii x1
• Culturelle w/ Lactobacilius x1

Of course, I don't always manage to fit all of these in everyday. Some days I forget to take my supplements with me when I go out. Other days my food and pharma schedule gets in the way. Taking things on an empty stomach away from pharma is best, but when you're constantly hungry, and trying not to loose any more weight, food time is all the time. That said, I do, almost without exception, take my pharama stuff every day. I figure that if I have to choose between missing pharmas or supplements that I should skip the latter.

Storing all of these plus the half-empty bottles of antibiotics that my LLMD prescribed, but later switched has become a small challenge too. I've taken over a whole drawer in the kitchen pantry for the stuff that doesn't need to be refrigerated.  Everything has to be kept up high so that my 4 year old daughter doesn't help herself to Daddy's "vitamins".

There are actually a few more in there now.

I Have Lyme Disease

So it's confirmed (pretty much)...I have Lyme. Holy !@#$%&*

I say "pretty much" because I still need to talk to my new doctor, Dr. Steven Meed, about my results. They're from IGeneX and, as I mentioned previously, he's running another test via Stony Brook because he's not a fan of IGeneX. I'd like to get his perspective, but for all intents and purposes I'm considering myself a Lymie.

According to IGeneX's analysis, I tested fairly positive for Borreliosis. However, I do not meet the positive criteria for the CDC or New York State. Fortunately that doesn't matter much anyway since most doctors who treat Lyme don't look to the CDC's criteria and New York has the most stringent criteria in the country. See the bottom of this post for the exact IGeneX results.

I'm into my second week of Doxycycline and still feeling worse than when I started, but I'm feeling less of a spike in symptoms (herx) after dosing in the evening (200mg). It feels a little more even with just some minor peaks and valleys. I read somewhere that the bugs are only (or mostly) killed off when they migrate or multiply or whatever it is that they do to move around and grow. This only happens once every few weeks and people have reported having cyclical herxing every 4 weeks or so. I'll be on the look out for that.

I'm still concerned about my viruses. My HHV-6, EBV and Pp titers were pretty high. Dr. Meed said that this is because of the Lyme. It's beating up my immune system so the viral levels come up. His thinking is that if I treat the Lyme and get my immune system back on track it will take care of the viruses the way it's supposed to. I hope this is true.

So... what a whammy, right? For the last 6 months... well, 4 months really, I've been living, eating, breathing Chronic Fatigue Syndrome. I was ready to turn life on it's ear and enter the dark and mysterious world of the Marshall Protocol. Now here I am with a real name to my condition and a somewhat more practical approach to treatment. Of course I'm fully aware of the fact that it's highly unlikely that this is going to go away in the next few weeks. I expect a time line of many months followed by a lifetime of continued vigilance against relapses, but at least there's an event horizon for getting my life back.

As promised above, for those of your reading and researching, here's exactly what my IGeneX results say. I was also tested for Erlichiosis, Bartonella, Babesiosis, but the titers were in the :20 and :40 range and clearly negative.

IGENEX IGG RESULTS = Positive
CDC/NYS - RESULTS = Negative

IGG:
       18 kDa. -
       22 kDa. - 
**23-25 kDa. ++
       28 kDa. -
       30 kDa. -
     **31 kDa. IND
     **34 kDa. -
     **39 kDa. IND
     **41 kDa. ++
       45 kDa. -
       58 kDa. ++
       66 kDa. -
       73 kDa. -
**83-93 kDa. +

IGM:
       18 kDa. -
       22 kDa. - 
**23-25 kDa. IND
       28 kDa. -
       30 kDa. -
       **31 kDa. ++
     **34 kDa. -
     **39 kDa. -
     **41 kDa. +
       45 kDa. -
       58 kDa. -
       66 kDa. +
       73 kDa. -
**83-93 kDa. IND

Smells Like Lyme

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.

31 Vials of Blood

I 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:

• Cortisol - To help balance out my circadian rhythm and sleep better
• Nystatin - For canadida and yeast
• Rest & Restore - It's full of Melatonin and has been really helpful so far
• MitoMax - For mitochondrial health and ATP improvement
• Daily Energy Enfusion - A bunch of vitamins in one powder

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.