What your doctor won't tell you and what you DEFINITELY NEED TO KNOW before it's too late (especially if you have chronic, unexplained pain or illness)

Before I start - I don't have the energy to retrace my research and provide you with links, but please be aware that as an English major, I always, ALWAYS double-check my sources. Take it upon yourself to do the research.

It started last April with the most horrendous earache I've ever experienced. I'd never had an ear infection, so I assumed it was the start of one. Unfortunately I had no time to see the doctor before the camping trip I was leaving for that very afternoon.
Over the course of the trip I became very ill. The ear pain was still heinous, but a severe upper respiratory infection had begun. This was no head cold. It spread into my chest within a matter of two days.
I immediately saw a doctor, who prescribed Biaxin and steroids (as my breathing was labored at this point). I began to feel better within about a week; the ear pain, although unexplained as there was no infection, had subsided; the respiratory infection was coming to an end; all was right with the world.

Or so I thought.

Over the course of the next few months, my ear pain returned. Sinus infections returned. I saw two different ENTs. CT scans revealed that the pain that was now radiating from the base of by skull and ear down my neck and shoulder may have been related to a completely blocked right sinus (although I felt that was unlikely, since I've had sinus issues since I can remember). I had a sinuplasty (ouch!). The pain was still awful. Over the course of trying to figure things out I was prescribed several rounds of steroids - each round making me feel a little better for a short period of time. It would return full blast (and then some), however, and depression was setting in. (I have never, EVER been a depressed person.) Another CT scan revealed a cyst in my right sinus, but my ENT said it was too small to be causing all of the issues I was having. She referred me to a pain management doctor, who spent about three minutes speaking with me and then declared that I had occipital neuralgia. His suggestion was a steroid shot in the occipital nerve. It was scheduled, but then I missed the appointment (thank goodness. More on that later.)

I was at my wit's end when a massage calmed the pain at the back of my neck (apparently, not occipital neuralgia, and probably muscular???). Later that night (literally within hours of experiencing a little relief) I began to experience shooting pains all over my entire body. They were so intense that I asked my boyfriend to take me to the emergency room. The nerves in my eyelids were going insane - it felt like my eyelids were on fire. The pain shot through my face, arms, chest, legs, even my tongue. My bottom lip was numb and my legs were tingling. With a 6.5 hour wait at the emergency room, however (yes. yes, I did just say "6.5 hour wait"), I stuck it out and waited until the nerve pains had calmed, then headed home to rest.

Over the next few days I experienced these shooting pains several times. I started taking a vitamin B complex and they weren't as severe, but they were still there. I then began to experience dizzy spells. Not the room-is-spinning kind. It's hard to explain. When it happens it feels like things are a little sideways. My head feels really funny and it feels like everything I'm seeing is fake. I get disoriented. Which then causes panic attacks, respiratory distress, and basically the scariest thing I've ever experienced in my life.

Now, I need to devote a bit of info to my ankle problem here. Two years ago, my right ankle began to hurt out of nowhere. No injury, strain, anything. After physical therapy, MRIs, etc. - no one could explain the pain, so I went to see one of the top foot/ankle specialists in Maryland. Even he was puzzled. He therefore took some blood and tested me for rheumatoid arthritis, Lyme disease, and some other stuff I can't remember right now.

Everything came back negative.

Anyway, back to the present. Dizzy spells are occurring multiple times daily. I feel like I have the flu. Nerve pains are raging. I am now experiencing heavy, aching pains all over my body as well. At this point there was talk of possible MS, toxic mold poisoning, Lupus... the list went on and on. Symptoms were getting worse. I was getting really, really scared. And then - by an act of God (no, I am not saying that ironically. I know beyond a shadow of a doubt God put this woman in my path) - I had a conversation with a woman that most likely prevented me from being in a wheelchair.

 I had missed a couple of weeks of work because of the pain I was in, and the woman who subbed for me, while looking for one of the pages I had sent in my sub plans, just so happened to come across a web page I had viewed on my work computer months prior for about ten seconds back when my ankle specialist had tested me for Lyme. No big thing. I returned to work and didn't see her for a while as she hadn't been in to sub for anyone else.

Then one day she was filling in for a fellow teacher. I thanked her for subbing for me while I was out for so long and she asked me how I was doing. I explained to her that I wasn't doing so great, and gave her a short rundown of my ailments. She then explained that she had seen the Lyme webpage and asked if I had been thinking I had Lyme. I then told her about my negative Lyme test, at which point she began to tell me about her battle with Lyme.

How did it start for her? Intense, unexplained pain in the inner ear. Pain in her ankle. Pain in her head. Pain that moved all over her body (similar, much?). She had been to see multiple doctors and specialists, none of whom could figure out why she was ill. She began to feel, much like I did, that she was crazy. She, too, had been tested for Lyme, but the test had come back negative. So she did some research. And then some more research. She began learning about the way the medical industry treats Lyme disease.

Most doctors won't even look for Lyme. But the ones that do? Well, they'll send a blood test off to LabCorp, and if that test comes back negative, Lyme as a diagnosis will be taken out of the picture. So then they'll start to look for other things, such as MS, chronic fatigue syndrome, various auto immune diseases... the list goes on and on. Here's the thing, though:

Only a SMALL PERCENTAGE OF PATIENTS WITH LYME DISEASE WILL HAVE A POSITIVE LYME TEST.

Yep. In fact, the state of Virginia just passed a law which states that diagnostic labs must inform patients that Lyme tests aren't reliable. Funny how doctors in Maryland (no lie, it's like a conspiracy around here) will tell you that "if it's unreliable, it's because of too many false positives." --- Ummm, seriously?

Second thing you need to know about Lyme: Less than half of those bitten ever experience a rash or bullseye. Our area is one of the most Lyme-infested places on the planet (the DMV and Northeast) - and deer ticks are so tiny that by the time they've gorged themselves on your blood and their little teeny legs come out of your body and they fall off (you're welcome for that disgusting visual), you'd never know. Especially if they're in your hair.

She read about how more and more people are being MISDIAGNOSED WITH MS, LUPUS, ETC., only to find out, after they're in a wheelchair and the effects are irreversible, that they have Lyme Disease. This is not a joke. This is not people on message boards all over the internet overreacting and assuming they were misdiagnosed.

This is completely legit. It's like an epidemic, particularly in our area. She then found one of the most educated people on Lyme - Dr. Jaller in Germantown, MD - and set up a visit, just to see if maybe that was her problem.

It was. He sent out a different blood test to confirm (one that only two labs in the entire country, from what I understand, will run). Sure enough, her Lyme levels were OFF the charts. She also had four co-infections that are common to Lyme.

It took two years of treatment, various rounds of antibiotics, etc. for her to shake it completely and become symptom-free.

As for me, I saw the same doctor last Monday. After listening to my symptoms, he is almost certain that that's what I have. I receive the official test results tomorrow, which STILL may not be conclusive. There are some patients who never have a positive test, but respond to treatment. There are other patients who won't have a positive test until they're ON treatment, and the bacteria has been shaken up by the meds. I just learned yesterday of a doctor who was diagnosed with ALS (Lou Gehrig's), and was told, as there really isn't anything you can do about ALS, that he didn't have very long. He was prepared for the worst. But having seen the research on Lyme and understanding that the disease likes to hide itself and masquerade as a number of other untreatable diseases, he thought... what the heck? And began to treat himself for Lyme. He never had a positive blood test either; but, on treatment, he found the bacteria of Lyme DNA in his urine. Oh, yeah. And totally cured himself and got better.

Dude definitely didn't have ALS.

But he certainly could've been paralyzed for life and could've even died if the Lyme was allowed to go on.

Because of the strange/scary neurological and cognitive issues I'm having I saw a neurologist, who took a look at the MRI of my brain and said she couldn't see anything that indicated MS - and she confirmed that my symptoms can be explained by Lyme. She also said that I didn't have neuralgia (thank God that I confused that appointment date for my nerve block shot, as the heavy amount of steroids would've made my immune system even weaker). I could write ten thousand posts about morons like the "pain management" doctor I saw who are paid to spend less than five minutes with you and then just treat your symptoms until your bank account is depleted... but that's a rant for another day. I am now on two different meds for Lyme (we started treatment before the results because he's that certain that I have it). Doxycycline and Tindamax. Unfortunately (and I was warned of this, both by my friend and work and the doctor) my symptoms have become much worse. The fatigue is so bad that I can barely write this post. At times I cannot walk down my stairs or get out of bed because my legs feel like they're filled with lead. My cognitive symptoms are much worse; the weird, dizzy/disoriented feeling is awful and I am now on Xanax (apparently, even panic attacks are a very common symptom of Lyme - ???). Although I certainly hope this isn't the case, it could take years for me to get rid of this since I had it for a year (and possibly longer) without knowing. I am grateful that God put the woman at work in my path and am even more grateful for His unfailing love, as well as the awesome family and friends He's given me who are all helping me get through this. In the meantime, though, it's really, really hard. I wouldn't wish this on my worst enemy. So please, PLEASE - if you read this and you know someone with chronic illness or pain - please share this with them. Especially if their illness is unexplained or their diagnosis wasn't based on anything conclusive. Have them look into the symptoms. There are about a billion, but it's worth looking into if you can't figure out what's going on. Even if this post helps ONE person who doesn't know he or she has Lyme Disease, it will be worth the three seconds it takes to share this post.

PLEASE SHARE!!!!!