Back in the Doctor's Office (LD Post #7)

I saw my new Lyme disease doctor in December of 2009, hopeful that he would be able to pickup where the last doctor had left off. He ran a number of different tests on me, but we did not recheck for the Lyme disease and co-infections at that point to save money. We already knew that I had them. One of the most reliable labs to use for testing also does not take insurance (IGeneX), and testing for the Lyme disease and all the co-infections usually costs over $1000.

It took a little bit of time for all the results to get back to the doctor, and I went back to the office for a follow-up visit in February of 2010. We learned two very important things at that visit, and they'll both take a little bit of explaining.

New thing #1: CD-57 test 
This link will give you more details if you're interested, but here's the Wendi summary.
I'm sure almost all of you are familiar with a T-cell count. It's the test they do on people that have the HIV infection, and it's a marker they check to see how active the infection is. A low T-cell count is a bad thing because it means the infection is active. In the same way, the CD-57 test checks a subset of specific cells that have been found to react to the Lyme infection. The lower the count, the more active the infection is. 

Here's the numbers they use at LabCorp (best lab for this test):

• 200 or higher normal, no Lyme disease
• 60-100 Have Lyme disease
• 0-60 seen in chronic Lyme disease
• 20 or less severe illness

If I remember correctly, the goal of someone with chronic Lyme would be to get over the 100 mark and get as high as possible. My tests results gave me a 19. I guess I failed that test.

It was a little surprising to have a result that low, but still I hadn't been feeling that great so it wasn't a huge shock. I started back on the antibiotics to treat the Lyme disease.

New thing #2: Gluten
One of the trendy things these days is to be "gluten-free". Ah, if only I was trendy. Flashback to my NJ doctor. Towards the end of the time I was seeing her, I had a borderline test result on a gluten allergy. She recommended that I cut back or cut gluten out of my diet. At that point I had already cut dairy out of my diet - and that had been very difficult for me. There were so many things that I had loved eating that had dairy - yogurt, chocolate milk, cheese.. But pain is a good motivator, and I had managed to cut it out of my diet. But gluten too? Do you know what gluten is in? EVERYTHING. Well, it seems that way when you first start out. 

What is gluten? Gluten is a protein found in wheat, rye and barley. It's the thing that gives elasticity and often chewiness to whatever it's in (think bread, cakes, cookies). And if any of you have ever eaten gluten-free products and found them lacking - well, it's probably because it's missing that certain something that gluten provides.


Unfortunately, gluten is also the hardest thing for the human body to digest. Well, other than coins and legos and such.


And this post is reaching the point of already being too long already and I have so much more to say about gluten.