Consumed with research

I went to a party at a friends house about 2 wks ago and as I was talking to a friend about my recent health issues another lady who I had just met suggested that I get checked out for Lyme's Disease. She went onto say she knew it was weird to suggest, being she doesn't know me but a friend of hers just happen to recently be telling her that if she knew anyone who had medical issues that nobody could figure out to tell them to get checked for Lyme's. I thought "what the heck, it can't hurt at this point", so I asked her to email me the information her other friends had.

About 3 days later I received an email with a link to an essay that a Dr had written about this disease and when someone should suspect they have it. As I read this article I thought "wow, this is talking about me!" Almost every single "symptom" that someone who has undiagnosed Lyme's disease I can say I've had at one point in my medical history. In fact, as I read and read this 11 page report, I thought to myself "WOW, maybe I've had something like this for longer than anyone realizes and I've been living with this most of my life?!?!?"

The question now is "do I have Lyme's Disease or one of the co-infectious diseases that can cause Lyme's symptoms??" If so, it's a matter finding out WHAT is plaguing me and the treatment is antibiotic therapy for the rest of my life. Could this mean that by taking a pill everyday for the rest of my life I could possibly feel like the rest of the world and enjoy waking up each day, enjoy doing things other than lounging around feeling like crap?? Could I really feel like a real person again that is actually living their life? Instead of someone who is just taking up space and feeling like I never want to do anything because I have no energy, no motivation and feel like crap?? WOW, the possibility of this is super exciting to me! But now, where do I being??

Along with the information that was sent to me was also a Dr's name in Colorado Springs. I tried calling them to make an appointment but was informed that without a referral form my Dr they won't see me. That felt like a ton of bricks crashing down on my hopes. I told the lady on the other line that my insurance doesn't require a referral and she responded with "our Dr's require one so when you get it call us back." I just sat there with an empty feeling. I really want to bypass seeing my Dr and get right into digging into this mystery. But obviously this isn't possible and I have to go through the process as they require.

So my next call was making an appt with my family Dr. While making the appt, the scheduler asked me what I was needing to come in for. I laughed and told her "what don't I need to be seen for" - she paused for a minute and said, "well, please let me know what you are coming in for so I can schedule the right amount of time", I proceeded to let her know that I need to discuss with my Dr many health issues I'm experiencing and the possibility of some infectious diseases I think I could have....she went ahead and scheduled the appt for the 30th, I have no idea how long she scheduled it for so hopefully it's a good amount of time as I'm going to need it.

I'm sure when I present to my Dr all the research I've done he is going to be quite surprised and hopefully will take this and me seriously...if not, I think it's time to find another Dr. I've been seeing this particular family Dr for at least 12 yrs now so he has a pretty good file on me and I'm pretty confident he'll do what I tell him I need him to do. Right now, until the end of the year, my insurance deductible is met, so now is the time to do any and all tests possible as it's 100% covered for me. I don't care if I have to be poked and scanned a million times, I want them to do what needs to be done to get to the bottom of all this.

So you might be wondering, what exactly are the things that would come along with Lyme's disease and what is the "co-infection" she mentions above. There are many co-infections that could cause LD symptoms and that are very similar to LD.

LD is transmitted by receiving a tick bite. I can't recall at anytime in my life being bitten by a tick, however when I was a young child, under 5, did spend some time living with my grandparents in Ohio - they lived on an acre of property that was surrounded by woods that I played in all the time - potentially I could of been bitten by a tick at some point during that time and not know about it - unfortunately my grandparents are no long with us so I can't ask them and my parents don't recall ever knowing about a tick bite. So if I have never been bitten by a tick that leads me to believe I could quite possibly have one of these similar conditions that are transmitted by fleas and mosquitoes....definitely we know I've had my share of those bites in my lifetime, the most recent with an illness following was 5 yrs ago as I had shared in my last posting.

The specific infection I'm going to look into is called Borrelia burgdorferi and is thought to be transmitted by fleas and mosquitoes. Based on everything I've read, this particular bacterium can cause LD. All of the information and symptoms I've suffered from for so long lead me back to this potential.

I fear that all this might sound really extreme to my Dr but at this point I don't care. I've had so many things wrong with me for so long that I can't live like this anymore - I want to be free of illness, fatigue and chronic problems. I'm also quite worried because there are a number of laboratory tests that doctors may use to try to detect LD but they are notoriously inaccurate, often producing "false negative" results, i.e. showing that a patient does not have Lyme disease when in fact they do. The reasons for this are due to the fact that the Borrelia burgdorferi spirochete is so adept at evading both our immune cells and conventional bacterial detection methods. There are 300+ known strains of Bb so it's painfully obvious that this is one elusive bug. Currently I'm searching out what specific blood tests are most accurate to detect this infection. It's like nailing jello to a wall, it really is. From all I've read, people who have this particular bug repeatedly receive negative results from blood tests - not really great in raising hopes of finding it.

On the other hand, although all my various symptoms seem to point to this or something like this, I worry that I in fact don't have this and will be told that there is nothing that can be done for me - that is my biggest fear...I guess we'll cross that road if and when we get to it.

Of course, as I am preparing to post this blog entry, I am suffering from a cold that just got hold of me this past weekend. That's me, always sick with something! It might seem I make light of this but what else can I do?