Friday, January 18, 2013

Free Lyme culture test for certain states - for research

Let me first start with a fun fact I got today from my CFS doc during my appointment:

60-70% of the patients that come to him with CFS and Fibromyalgia turn out to have Lyme disease. 

Quite a shocker, let me tell you.

Which leads me to...saw this article about how Advanced Laboratory Services are starting a research trial to create a faster, cheaper Lyme culture (faster than the $600 test that takes up to 3 months that they currently have). They run your sample through both the full, well-established test, and through the new methods as part of the research study free-of-charge. Someone else posted on the forum where I saw the article that only certain states qualify (i.e. your doctor has to be registered in that state) for the research trials:

CA, CT, FL, IA, MD, MA, MN, NH, NJ, OR, PA, UT, VA, VT and W

 and they're still in the process of sorting everything out, the testing hasn't begun yet.

The first step seems to be to have your doctor fill out a form and contact Advances Lab Services. From the article:

Regular collection kits can be ordered by practitioners online by clicking on “Order Kits” (tab at top right). Click here for website.  Research kits will only be sent after a practitioner has registered with the lab and each patient has been pre-qualified – there is a form that the lab will provide to interested practitioners.  Practitioners can email the lab at

Advanced Labs will only talk to doctor's offices, so it won't do any good to talk to them directly unfortunately. I hope this is somewhat helpful to people! If you need a doc to write you a test (they're in California, but you can reside anywhere to see one of their doctors--they do Skype/phone appointments and such-- my CFS doc's clinic can provide a doctor. However, they're out of network and might not necessarily be covered. but one appointment is probably cheaper than the original cost itself test itself, if you can get it free.

Thursday, January 3, 2013

Asking for help

Happy New Year everyone! So happy 2012 has passed, may 2013 be a better year for all of us :)

I flew home for 4 days right before the New Year to see my family. It's not my first flight home since I've moved (first was Thanksgiving) but I flew down by myself without my boyfriend, which was a first for me (we flew back up together, long story). I was SO nervous to face the airport by myself, I worried about it for  almost the whole week leading up to it and felt nauseous most of the day of the flight. I had no idea what to expect, long lines, chaos, who knows. The beau was quite wonderful and looked up TSA info on getting through security lines for people with a disability and made me call the airline to get more info on boarding and such, when I was refusing to. There wasn't a LOT of info, but it made me a little braver to stand up for myself and my needs. Can I just say, I HATE all of that. I want to do things myself, I refuse to be wheeled anywhere (people keep suggesting this), I don't like to talk about my Lyme and CFS, and I don't like drawing attention to myself. I'm very stubborn. But I also realized I don't want to feel more sick than I have to, so I swallowed my pride and asked for help. I told the person at security I had a medical condition that prevented me from standing in line, and he let me bypass the security line. I told the attendant by the gate the same thing and they let me pre-board. It was so nice! And it made the airport trip much more manageable. I also sat on my carry-on suitcase whenever I had to stand, which probably looked weird, but what the hell.

Maybe it's coincidence, or it's just people realize how much they miss their independence after the fact, but it seems like a lot of people with CFS, ME, Chronic Lyme, etc all used to be very independent and had/have (to our own demise) a strong sense of self. The hardest lesson I have learned (other than staying within my limits) is asking for help. And I can't say that I've actually "learned" it yet, I only do it under extreme coercion heh. Why is it that I find it so hard to admit I need help and ask for it, even minor things? Yes, it will probably get me a few looks, draw some questions but in the end I'd like to think I would get the help I need to get through the day with at least a tiny bit less fallout. And if we're out in the world, there may even be a legal obligation for others to help us ;) Maybe I'm too naively optimistic; I haven't actually tried it enough to know, but I can hope!

I've forced myself to ask help from roommates, family, coworkers, my boyfriend. Every time I do it, I feel like I'm tearing away a piece of my soul and it hurts. It sounds overly dramatic, but it's hard to understand you've had your independence taken away. In the end, I'd like to think that these moments I buckle and ask for help will help save my energy a little, will help me heal a little bit more, and when I'm better I will be able to repay everyone a thousandfold. We'll see I guess.