Why Didn’t I Find Out Sooner?

Well, there’s a lot of different reasons for that.  First of all, knowledge of Lyme disease is very limited when it comes to doctors.  Surprisingly, a lot of doctors lack basic knowledge about Lyme.  I had a doctor tell me that I wasn’t sick enough to have Lyme; that if I’d actually had it for this long I would be completely crippled or dead.  I had another doctor tell me that Lyme is only on the east coast, and that there are very, very few known cases of Lyme on the West Coast.  Clearly, they were wrong.

Lyme Disease Risk map. Note the northern regions. . . .

Also, there’s this whole political situation with this Lyme stuff.  Basically, the CDC and the IDSA (Infectious Disease Society of America) have declared that Lyme has only very specific manifestations.  Unless you have a clear bull’s eye rash, memory of being bitten by a tick, and clear Lyme symptoms within the narrow spectrum of symptoms they have approved of, they would say that you do not have Lyme.  Unfortunately, most doctors follow the same school of thought.  Thankfully, there is another school of thought, those of the LLMDs (Lyme-Literate-MDs).  These doctors hold to several key truths about Lyme that other doctors ignore: 1. A rash is not present in all patients, in fact, surveys have shown that fewer than 50% of Lyme patients received a rash of any kind. 2. Lyme is a multi-system infectious disease.  It can present itself within a vast array of symptoms that are different for every patient.  Some have seizures, others can’t eat, and still others just have pain.  3. A two-week course of antibiotics (the standard treatment as projected by the IDSA) is not effective for the treatment of Lyme, especially late-stage Lyme. 4. The majority of Lyme patients have no memory of a tick bite, or even seeing a tick anywhere on them.

Furthermore, Lyme mimics like no other.  Because Lyme behaves so differently for each person, there is really no standard to compare one too.  Basically, if more and more things keep going wrong in your body and there is no obvious reason found, you probably have Lyme Disease. Fibromyalgia, Chronic Fatigue Syndrome, Epilepsy, Celiac Disease, GERD, Stress, Depression, ALS, Early Dimentia, Alzheimer’s, AD-HD, ADD, Dyslexia, are all common miss-diagnoseses for Lyme patients.  Personally, I was diagnosed with Hypoglycemia, high blood sugar, depression, Celiac Disease, GERD, PMS, Chronic Fatigue Syndrome, and stress at various times before my final diagnoses of Lyme.

In addition, my case of Lyme was just so simply weird.  Yes, there is no standard for how Lyme presents itself.  But I have heard stories of other Lyme patients, and compared to them I am weird.  I got a summer flu in which I had migratory severe pain.  I then recovered from the flu, only to come down with severe chest pains.  Those chest pains were the only symptom I had for about a year.  I then developed digestive issues, and I had stomach pain that wasn’t linked to anything.  Then it started to finally look like Lyme, as I developed problems with joint pain and cognitive dysfunction.

You see, I have never been consistently terribly ill; my health fluctuated up and down and down and up these whole five years.  My health would go down, I’d get a new diagnoses, and then my health would go up again so we’d think the diagnoses was working!  And then it would go back down to the pits, and then I’d get another diagnoses and so on.  And on top of all THAT, I had the weirdest coincidences that would occur during my flare-ups.  The beginning of my illness occurred within a week of a friend’s tragic death  (before it happened, I might add).  So the doctor declared that the chest pains were as a result of depression.  I came back a year later, and I was told that because it was the anniversary of my friend’s death, I was still depressed.  (I was surprised, but had no reason to doubt the doc. . .oh!  Except for the fact that I didn’t feel depressed. . . hmmm. . . )  The next time I got a new doc, I was in the middle of getting ready to leave my family, whom I had never left before, to go far away to college.  Well, apparently I was stressed, because that’s what the doctor told me.  Then work was stressful, and personal circumstances made life even more stressful, and so the next flare-up was logically explained to me by another new doctor.  I ‘broke my body’ and ‘needed to learn to listen to my body’ and had to ‘rest, de-stress and the aches and pains would be gone in a couple weeks.’  Not surprisingly, those now four-year-long aches and pains did not go away in a couple of weeks of R&R.  : P

So!  With all of that working against me, how is it that we finally found out?  Well, unfortunately but also fortunately, I caught Lyme with a couple other folks.  There’s no way to prove that we caught it altogether at the same place without a time machin,  but that doesn’t really matter.  The point is, I would not know today that I have Lyme were it not for these other folks who were diagnosed with Lyme.  They had it a lot worse than me; multiple hospital visits and feeding tubes–but they got diagnosed.  And they didn’t forget me.  When they heard that I was still sick, I got a call from the father of one of these folks insisting that I go see the Lyme specialist.  He had me print out a list from some Lyme foundation of all these Lyme symptoms.  You’re supposed to circle all the symptoms you have or have had–if you circle 20, you probably have Lyme.  I circled 49.  That was enough for me, so I saw the LLMD, got my diagnoses, and started treatment!  ^_^ I’ve been dreaming of getting better this whole time, and now after five years and nine doctors I’m finally on that road to recovery.  It’s hard, it kinda sucks, and I feel like crap a lot of the time but I can honestly say that I have never been happier.  🙂  (okay, admittedly I sometimes forget that I’m happy and need to be reminded that I’m living the dream hehe)

Well!  There you have it!  That’s why Lyme is so hard to diagnose and why it was hard specifically for me.  For further information, watch: Under Our Skin the documentary on Lyme Disease.  It’s the best source for explaining the whole political situation of Lyme.  🙂  (Available on Netflix instant watch!)

Watch out for ticks, and don’t get bit!

~LymeDiseaseWarrior