One Step Forward… Hopefully

November 27, 2011 § 2 Comments

This past Wednesday I had the opportunity to see a Lyme literate medical doctor. Due to all of the controversy surrounding Lyme, and the assumption that Lyme doesn’t exist in Ohio, there are only three LLMD’s in the tri-state area. Luckily, the closest one is only about a hour and a half away.

Brandon and I drove down and met with the doctor. (It’s not proper edict to post the Dr’s name, due to the possibility of loosing their medical license for treating chronic Lyme disease.) She took the time to review all of my medical records and iGeneX test results. After looking at the test results and reviewing my symptoms, she’s under the impression that it is very likely that I do in fact have Lyme disease. A confirmed diagnosis will only come if the treatment is successful.

So the next step… I just started on the Cowden Protocol, an aggressive 6 month protocol with an array of herbs and a few dietary supplements. While the doctor didn’t touch on diet a whole lot, I plan on keeping a pretty strict, whole food diet with limited grains and lots of veggies. And of course, a daily smoothie!

I have a follow up appointment in a month. I’m praying for a lot of progress between now and then!



November 13, 2011 § Leave a comment

After a month of waiting , they finally came back. My Lyme test results.

So, I had my blood drawn for my Lyme test on October 3rd. From there it was shipped off to iGeneX, a Lyme speciality lab that is supposedly the best in the country for detecting the bacteria that causes Lyme Disease. All I had to do was wait 10 days and I would have the results in hand. An answer, finally.

Of course 10 days would be far to convenient… After countless harassing phone calls to the doctor’s office, being told that there was some sort of paper mix up, and 30 days later, I finally received a phone call from the doctors office. “So, Crystal, it looks as if your test results came back normal.”

The nurse at the doctors office wrapped up the conversation rather quickly as I sat on the other end of the phone too dumbfounded to think of any questions to ask. Normal?!? What exactly does normal mean?

I had convinced myself that Lyme was the answer. The answer to all of my symptoms that MS didn’t really have an explanation for. I couldn’t believe it. I felt that I was the definition for denial. If it isn’t Lyme, what made my body start attacking itself? The MSA test said I had Lyme… Should I get another test done?

I received the hard copy test results in the mail a few days after the initial news. Not incredibly motivated to sort though confusing reports that were normal, I handed them to Brandon to decipher for me. After a few moments, we began to go through them.

It soon became apparent that these tests weren’t exactly “normal” as I was previously told. The first test is an experimental test created by the lab. The CDC does not recognize this method of testing as a means of aiding in diagnosis process. However, It came back as equivocal. This means that it wasn’t positive or negative, but in the middle of the two markers. In this case the lab recommends either being retested in 4-6 weeks, or looking to the Western Blot tests for more information.

So we flipped to the Western Blot tests. There are two types of Western Blot tests, the IGm and the IGg. The IGm test usually indicates that there is an ongoing infection, where as the IGg test indicates a more current, recent infection.

The IGm wasn’t too much help, as it came back negative according to the CDC standards as well as by iGeneX’s standards. The IGg was a little more insightful as it came back negative by the CDC standards, but positive by iGeneX’s standards.

Why two different standards? Well… This is where it might get a little confusing.

Lyme disease has been recognized by medical professionals as being incredibly difficult to diagnose, and should be diagnosed primarily on symptoms and clinical evaluation. However, blood tests can aid in the process. The CDC has even taken this stance.

The Western Blot tests are considered to be one of the best tests that there is to detect Lyme disease. WB tests look for a handful of bands to be either positive or negative. It is generally agreed that some bands are more significant than others. According to the CDC, 5 bands need to be positive for the entire test to be considered positive. iGeneX has separated out the significant bands from the others. By their standards, only 2 significant bands need to be positive for the entire test to be positive.

I’m not currently looking at my results, so I may need to update this a little later, but I believe that I had two significant bands come back positive and two other bands come back as indeterminate… In-between positive and negative.

So, long story short… It looks like Lyme may be a really, really good possibility. I’m not entirely sure where to go from here… I guess I need to find a Lyme literate medical doctor, llmd, to run my results by and get their thoughts on all of this. In the mean time, I have began taking a few more herbs that should help with the healing process if it is in fact Lyme!

Disclaimer: I’m not a doctor, so please don’t quote me on any of this! This is what I have gathered from the University of Google. 🙂

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