Sunday, January 9, 2011

Q & A with Alyson1derland

My aunt recently asked me several very wonderful questions about Lyme disease. Since my answers were very long and complicated, and since a lot of other people have come to me asking many questions about my disease, I decided to address them on here to help people understand my Lyme disease a little better. If there's something you've been curious to know about my disease, feel free to ask me. While I'm certainly no expert, I will answer to the best of my knowledge.

A few days ago, my aunt mailed an article to me about celiac disease, noticing that a lot of the symptoms of celiac are the same as Lyme disease. I asked my doctor to test me for celiac disease when I first got sick, because I had so many of the symptoms. However, my test came back negative. I've since learned that a lot of people with Lyme disease are/become gluten sensitive, so even if they don't test positive for celiac disease, many people with Lyme can't tolerate gluten.

I am on a strict no gluten (wheat), no dairy, and no sugar diet (well, low sugar is as best as I can manage). Though difficult to maintain, this diet is highly recommended for Lyme disease. The Lyme bacteria feed off of sugar and yeast, and you do not want to feed the Lyme disease! I repeat, do NOT feed the Lyme disease! Gluten increases inflammation, and since Lyme disease is an inflammatory disease, cutting out inflammatory foods is essential.

Question number one: How and when did I get Lyme disease? I have had symptoms of Lyme for a huge part of my life. I've had a handful of tick bites, but never got the bull's eye rash typically associated with Lyme disease. I've since learned that only about 50% of people get the rash (I will caution that there are a lot of variants on that statistic). When I was around 15, a lot of my symptoms started: crippling knee pain (I was put in physical therapy for this without anyone ever looking for a cause of my pain!), acid reflux, depression, anxiety, asthma, an ulcer, restless leg, horrible body aches, severe memory problems, thyroid problems, etc. I was told I had chronic fatigue syndrome (many doctors now think chronic fatigue and fibromyalgia are undiagnosed Lyme disease), though nothing was ever done for me. I remember feeling horrible for years, but I was still able to function. Let's just say that I was very grumpy during this period of my life...

When my husband and I first started dating, I was bit again (though I was bit by the love bug, that's not what I'm talking about here, people!). I never got a bull's eye rash, and I never thought about that tick bite again until piecing things together recently. All kinds of nasty symptoms starting popping up again: panic attacks, anxiety, depression, agoraphobia. I developed restless leg syndrome so bad I would wake up crying in agony for hours until it would stop. Then I was hit by an extremely severe case of mono for several months. After the mono passed, I had some leftover symptoms, but I was able to function again.

In August of 2009, I went on a trip to Canada and I haven't been the same since. Whether or not I contracted Lyme disease there or if it's something I've had in my body for years, we don't know for sure (scarily, you can get Lyme disease over and over). While I never found a tick on me when I was in Canada, I also never checked for ticks, so I could easily have been bitten and the tick could have dropped off before I even noticed. Yes that happens, and all I can say is welcome to a controversial hell on earth! According to this website, "fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete."

When you consider the fact that ticks can be as small as the period at the end of this sentence, detection can be tough. Have a look at the picture here to see just how small an embedded tick can be. Imagine trying to find that if it was in your hair! Though not as common, Lyme disease can also be transmitted from mosquitoes, and I was absolutely eaten alive by mosquitoes in Canada.

What I do know is that while in Canada, I got a very strange rash under both of my armpits that lasted for about 2 or 3 months. It itched ferociously and I saw several doctors for it over the weeks, all of whom diagnosed different things and prescribed various ointments that did nothing to alleviate the intense itching. It eventually stopped after a few months, but by that point, I had developed several other weird symptoms until finally, after being prescribed a course of antibiotics for a persistent sinus infection, my body was pushed to a tipping point and life as I knew it came crashing down around me. I became debilitated to the point of not being able to function and I've been trying to fight my way back ever since.

I was not checked for Lyme disease for many months because my mono test was positive (which is common with Lyme disease because it wreaks havoc on your immune system). It became apparent to me very quickly that my strange symptoms and unbearable pain had little to do with mono, but I was brushed off by doctor after doctor who ignored my desperate pleas for help. Always listen to your gut! When I was eventually tested for Lyme disease, my test came back highly positive for both a current active infection and a longstanding infection (meaning it had likely been in my body for over a year if my memory serves me correctly). My full Lyme story is here.

Question number two: Is there a cure or does it go into remission? If you are one of the "fortunate" people who finds a tick bite, develops the bull's eye rash, and gets treated correctly, you can most likely be cured. The longer you've had Lyme, the harder it is to treat. Lyme can lie dormant in your body for years. It can go into remission, although stress, among other things, can weaken your immune system and bring it back out.

One huge problem with treatment is that the ticks don't just transmit Lyme disease. There are a host of other co-infections that you can pick up along with Lyme: Bartonella, Mycoplasma, Erlichiosis, Babesia, to name a few. They cause their own set of symptoms which can be just as debilitating, just as hard to diagnose, and just as hard to treat as Lyme. You can get any and all combination of co-infections along with Lyme causing an extremely complicated and hard to treat case.

When you have a case of Lyme disease that wasn't treated properly, it can be very hard (and sometimes impossible) to eradicate the spirochetes from your body. The spirochetes bore into your muscle tissue and organs and are capable of doing an incredible amount of damage. They are very good at hiding from antibiotics. They can actually turn into a cyst form in order to protect themselves from the antibiotics, and they wait until the coast is clear to come back out. Treatment is very, very complicated and I don't envy my doctor one bit!

Question number three: Is it genetic or contagious? Lyme disease is not "catchy." You can't get it from kissing someone with Lyme. Nor can you get it from eating or drinking after them. Some doctors and scientists believe it can be sexually transmitted. It has also been found in breast milk. It has been passed from mother to child through the placenta, though no one knows how likely that is, because it is not something that can be studied. Many mothers who were infected with Lyme disease during pregnancy and were not treated (mostly because of misdiagnosis) have had miscarriages or stillbirths.

There is a lot that is unknown about Lyme disease and it is rife with controversy. This is a wonderful website to go for information about Lyme.

1 comment:

  1. Very informative!

    But I still ain't kissin' you

    Ashley :D