The Great Lyme Debate.....Answers!

As I sit here with paper towels clotting the blood from seeping where I just did my daily antibiotic shots (in a not so comfortable place), I'm fielding e-mail questions about Lyme Disease. It becomes more and more apparent, with Mystery Diagnosis on TV in the background, that people have questions about this unfamiliar disease - and I need to answer them.

So, here's a start....in no particular order:

• How could I not know I was bit by a tick?
  Because even mature ticks are about the size of a poppy seed, many people don't know they were bit. Further more, they have a knack for biting in places we don't look (scalp, back of knees, etc.). Many published reports inaccurately state that a victim of Lyme Disease will get a red bulls-eye rash at the sight of the tick bite. Although it can happen, many more people don't get the "typical" rash. Although some believe that Lyme Disease can be spread by mosquitoes, flies and fleas, I was in a tick infested area when I track back to first having symptoms - before I put them all together and knew it was really "something."

• Why didn't 30 days of antibiotics work?
  If I would have known I was bit by a tick right away, then 30 or 60 days of antibiotics probably would have done the trick. But, I didn't. Now, so many years later, the Lyme bacteria (Borrelia burgdorferi (Bb) - with over 300 strains around the world) has literally become embedded into my cells, tissue, bone marrow, etc. It's found a nice, cozy home in my body and it's very tricky to clear an infection of this magnitude at all, let alone with short term antibiotics.

• Why is Lyme Disease so hard to treat if it's not caught right away?
  It's a smart bacteria (no joke)!! Bb is a spirochete bacteria. When given the appropriate antibiotics to kill it, it changes shape to avoid death. In addition, it migrates away from the blood stream, hides in your own cells, and does basically anything to avoid detection.

• Aren't you worried about long-term antibiotic therapy?
  Yes and no, but it's the lesser of two evils here. I've seen people who have gone 10, 20, 30 years with no treatment. I went at least 5 (only diagnosed less than a year ago) and lived the devastating effects. I'm definitely more worried about what Lyme Disease will do left untreated than what threat antibiotics could impose.

• Why do I think the stem cell therapy will help? And, how?
  Antibiotics are the best bet for me to eradicate this bacteria. There are other alternative therapies, but antibiotics feel right to me. However, that's the only thing antibiotics can do - kill the bacteria. Since the bacteria invaded my immune system and also did damage to my nervous system and other body systems over the years, the stem cells will help to regenerate the damage. I need to deal with both keeping the Lyme Disease under control and helping to reverse the damage already done which is where I believe so much of my chronic pain stems from.

• How can people find out if they have Lyme Disease?
  The most important thing is to go to a Lyme Literate doctor (LLMD). The majority of physicians are either uninformed or misinformed about Lyme Disease. I went to the very best hospitals and institutions in the United States for years and no one caught it. You need a doctor well versed in Lyme Disease that knows what to look for and how to go about testing and treatment. Doctors have so much to learn, keep up with, etc. so you must go to someone who only deals with Lyme Disease. Trust me, it's such a big beast that it takes a doctor's full time and attention. Just as you can't expect your family doctor to be an expert on cancer, you can't put your life in the hands of someone who doesn't know a particular disease inside and out.

• What are the other issues that complicate Lyme Disease?
  One of the things that tends to be overlooked are "co-infections." It's unlikely that someone with Lyme Disease was bitten by a tick that carried only that one infection (bb). Ticks carry many illnesses and if they can give you Lyme Disease, they can also transmit other tick-born illnesses (and they do). If a doctor addresses the Lyme Disease only, then the co-infections can go on causing damage and making you more ill. The Lyme Disease and co-infections all need to be dealt with for the best chance of improvement. In my case, I have two co-infections which have brought on as much of a challenge as the Lyme Disease.

• What is my prognosis?
  Depends on who you ask. I believe it's excellent but that's because of the combination therapies I'm participating in. Many believe Lyme Disease will never really go away because of it's innate ability to hide, but will instead go in and out of remission much like most autoimmune diseases we are familiar with.

• "Didn't you get tested for Lyme Disease?"
  Yes, several times at my request. But, the tests came back negative. One huge institution I went to, the Mayo Clinic in Rochester, didn't even test me in their infectious disease department. Other institutions did, but I had no idea a the time that first, testing is a puzzle in itself. It has to be carefully interpreted and the guidelines set forth by the CDC are so stringent; it misses so many people. Second, the testing lab is a major key! The tests must be done by a lab that specializes in this type of science. Run of the mill labs are only required to be 80% accurate by law and even with that law, they often don't come close (which is insane). So, I had several false negatives until I was tested at a lab with 97% accuracy which showed positive "bands" indicative of Lyme Disease. It wasn't until I went to an amazing Lyme Literate doctor and got tested with the specialized lab that I really found out what was going on inside my body. Because of lack of funding for this disease, testing is not what it should be and with the CDC's strict protocol for what "positive" means, there is still lots of work to be done.
  

• Was your previous diagnosis wrong?
  Sort of but not really. I was originally diagnosed with a form of peripheral neuropathy which affected all my limbs. While I do have neuropathy, no one knew the cause was the Lyme Disease. When it invaded my nervous system, it began to damage nerves in my arms and legs. As time went on and I developed more symptoms (such as joint pain, headaches, fatigue, etc.), I was diagnosed with Undifferentiated Connective Tissue Disease (a Lupus-like disease). But, now I realize that something causes all of those things. In my case, it was the Lyme bacteria wreaking havock on my system. Now that I know more, I hear endless cases of people diagnosed with ALS, MS and other neuro-degenerative diseases that either had Lyme Disease instead, or have found out that the Lyme Disease triggered the others. In Western medicine, we are so focused on symptoms as a disease that we often overlook what is causing the symptoms - which is the real problem.

• Why don't doctors ever mention Lyme Disease?
  Some of it is ignorance, some of it is politics. A lot of doctors preach what they learned from the CDC or other government agencies. These agencies have a political agenda. The problem is so big and overwhelming at this point; seen as the biggest epidemic in America next to AIDS. But, it's also very difficult to treat because so many people have had it for so long. Difficult to treat means it's expensive to treat, which creates a huge problem for insurance companies, which then creates a problem for the doctors diagnosing something tough to treat that no one wants to pay for.

• But you live in California. Is there Lyme Disease there?
  I'd be living proof of a "yes" for that one. Although I know several people with Lyme Disease whose doctors in the area where we contracted Lyme Disease have said "there is no Lyme Disease there." Lyme Disease is anywhere ticks are and since they are transported on deer and other animals, they travel. They are in the woods, at the beach or in your backyard all over that favorite log you sit on.

• What is "herxing?" I keep hearing about this, but don't understand it
  This is a term used to refer to a reaction in the body that happens when the Lyme bacteria is being killed off at a faster rate than the liver and kidneys can process it. It's the intensification of symptoms in response to treatment, which actually means it's working! Lyme has a 4 week life cycle so it is constantly reproducing, aging and dying inside of you. Sometimes, a "herx" will take place around the 4 week mark. Other times, it coincides with treatments or nothing in particular. Detoxing is a big part of managing a "herx." If you think about it, once the antibiotics (or whatever you are using) kill the bacteria....where does it go? I know....ewww. There are several forms of detox I will discuss in a different post that have been helpful for me.

• I know there is a ton of misinformation out there. Where can I find accurate information?|
  Check out the Page of Links for a good start!

  I'm sure there are more questions out there, so contact me and bring 'em on!
  

Photo by: Scott Bauer

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog