Pharma Treatments

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

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.