Thursday, January 31, 2013


I watched a video this evening with clips from a woman's difficult battle with Lyme disease and it brought me to my knees, because it was my story, too. Watching her, I saw myself lying on the floor, unable to move. I saw myself too weak to make it up and down the steps. I remembered the times I had to be carried. I saw myself having convulsions; not knowing if I was going to survive this disease. And the pain; oh, the pain...That video was like watching my own journey, only the tears streaming down my face tonight were tears of victory, because I am winning my battle!

In just shy of one week, I will have been completely off antibiotics for Lyme disease and my multiple other tick-borne illnesses for two whole months and I'm still doing really well! For the first time that I can remember, I've had days with absolutely no pain in my body. The horrible pain that I've endured in my legs for years--one of my most maddening symptoms--is miraculously gone.

My doctor says that if I make it three months without antibiotics and am still doing this well, I will be in remission! I've endured so much and worked so hard for this. I want to scream it to the world, shout it from the rooftops, "REMISSION!!!!!!!" But, alas, I'm not quite there yet.

I've been through so many ups and downs with this disease and it really has been a classic case of one step forward, two steps back. Actually, it's been more like 1/16 of a step forward and 3 miles backwards down a hill, barefoot, in the snow, blindfolded. So it is with a healthy dose of caution that I am getting my hopes up for remission. I won't hug any strangers on the street just yet; however, if I make it my three months, all bets are off! Free hugs for everyone in my town; no, in my state; no, in the WORLD! (Healthy dose of caution, schmelthy dose of caution!)

Last night, I had night sweats for the first time in months--a big symptom of my co-infection babesia. But I'm thinking that it was actually my body finally rejecting the 100 blankets that it has always taken to keep me warm. My body is actually learning how to regulate its temperature again!

Last night, my night sweats were so bad that I had to get up and change my clothes in the middle of the night. The shirt that I was wearing happened to be my lime green homemade "Lyme Disease Survivor" shirt, and it did not survive the night. I couldn't help but laugh at that.

Like my survivor shirt, I've taken quite a beating. My shirt may have a letter that was put on upside-down and backwards, it has an olive oil stain that refuses to come out, an ice cream stain announcing my sugar addiction and it is faded from being washed so many times, but I still wear it proudly.

Hell, maybe I won't actually toss it in the wash and I will keep the smell of sweat on it that I have earned from beating the bejesus out of Lyme disease! Ew, no, nevermind. You can just read about my victory on here. That ratty thing is going in the wash right now...

Thursday, January 17, 2013

Borrelia Miyamotoi

This is a picture of me three years ago, shortly after I finally figured out why I was so sick: chronic Lyme disease--a controversial illness whose very existence is hotly debated by doctors. Is it real? Is it made up? While doctors are arguing, people are dying. I'm one of the lucky ones--though I came close, I didn't die. 
This picture is incredibly difficult for me to look at. This is me at my sickest. I was so sick and, despite the fact that I was eating like a teenage boy, I had dropped 20 pounds from my already slender frame. As you can see, my size 0 jeans are hanging off of me.

Though much of my life from that period is a blur, I remember perfectly the day this picture taken. I was in so much pain that I could barely stand up. See that death grip on the rail? See the way I'm standing, trying to take the pressure off my legs? My body was shutting down and I honestly didn't know if I was going to make it. Every day was a struggle to survive and the pain was just unimaginable.

I can't understand how anyone could be allowed to so obviously waste away, yet be told by doctor after doctor, "There's nothing wrong with you," or "You're just depressed." "We don't have Lyme disease here." I was so weak I often had to be carried; there were many days when I had to crawl to get from room to room.

Thankfully, miraculously, I found a doctor who was willing to help me. She believed me when no other doctor did. Because of her, I now look like this. It took two and a half years on antibiotics, but I'm now back up to my normal weight and I'm feeling wonderful again!

Today, several articles came out announcing a new tick-borne infection that was recently found in humans-- known at this point as Borrelia miyamotoi. According to this article, scientists identified Borrelia miyamotoi in ticks in Connecticut over a decade ago. Hold your hats; here comes the controversy: "Dr. Fish found B. miyamotoi in American ticks 10 years ago, but was repeatedly refused a study grant until the Russians proved it caused illness. “It’s been like pulling teeth,” he said. “Go ask the N.I.H. why.”

The article goes on to say: Most medical authorities, including the Centers for Disease Control and Prevention and the Infectious Disease Society of America, take the position that “chronic Lyme disease” does not exist and that those victims either have other illnesses or are hypochondriacs. They oppose the solution demanded by some self-proclaimed victims: long-term intravenous antibiotics.

Go ahead and look at that top picture of me again. How much longer could I have lived without treatment? Because of the fragile state I was in by the time I was finally tested for Lyme disease, a short course of antibiotics did nothing to eradicate the disease from my body. I was found to be suffering from not only Lyme disease, but several other tick-borne diseases that needed to be addressed before I would be well again: bartonella, babesia, anaplasma.

According to the studies of Lyme disease versus Borrelia miyamotoi, the two diseases have very similar symptoms and can be difficult to distinguish. One interesting thing to note is that B. miyamotoi doesn't cause the bulls-eye rash that Lyme disease causes. Both diseases are treated with antibiotics. Even with a bulls-eye rash, it can be nearly impossible to find a doctor who will treat you for Lyme disease. It's too early to know how many people with the Lyme-like symptoms of B. miyamotoi were turned away because they didn't have the bulls-eye rash associated with Lyme disease.

The tests for Lyme disease are horribly inaccurate; tests for B. miyamotoi do not even yet exist. That means the doctors are going to have to start believing their patients when they come in with Lyme-like symptoms. That means it is time to drop the hypochondriac stigma that has been attached to Lyme disease and other tick-borne illnesses.

It's hard to read this about the new tick-borne illness:"We've known about this bacterium for a long time -- at least 10 years," said Sam Telford III, a professor of infectious disease at Tufts University in Medford, Mass., who co-authored the report with Berardi. "It's been under our nose all this time, and a lot of us just ignored it until there was this case report."

Perhaps the medical community will take a lesson from B. miyamotoi--There is MUCH to be discovered about tick-borne diseases. It's time to drop the controversy. Here's to hoping that 2013 is the year that tick-borne illnesses are finally taken seriously!

Sunday, January 13, 2013

Blessings In Disguise

Last month, because of a problem (on our end) with our insurance company, I wasn't able to start the new treatment protocol for my Lyme disease, which was to get a PICC line. But, this "problem" with the insurance has turned out to be a major blessing in disguise for me!

When we last left off, I was doing very, very poorly. I quit my previous treatment (Bicillin shots) because it was not working any more. My next and only option--as long as the insurance would approve it, was a PICC line. I was (and still am!) very terrified of getting a PICC line. My doctor had been wanting me to get one for months. It took a lot for me to admit that it was finally time to go that route, but the last time I saw my Lyme doctor, I told her it was time.

I figured it wouldn't be long before I started the PICC line, but because of this issue with the insurance company, my doctor hasn't been able to start the paperwork for my PICC line. I've been off treatment now for almost six weeks--the longest I've been off of antibiotics in nearly two and a half years!

So here I am, a month and a half in without antibiotics and I feel...really, really great! A few things have changed recently and I feel like they have played an enormous part in my sudden improvement. I started a few new supplements and have also been very strict about taking all of my supplements. One of the new ones is an immune booster, a Chinese medicinal herb, and right after I started it, my energy levels starting soaring.

I was also recently diagnosed with a vitamin K deficiency, most likely from long-term antibiotics. I started a combination vitamin K/vitamin D supplement about a month ago, and I really think it has made a big difference. Another thing that I have been doing that I feel has greatly added to my health is that I am participating in the 30 day hula hoop challenge: 30 minutes of hooping a day for 30 days! It's a very difficult commitment, and I often don't get my peak energy until about 11 o'clock at night, but I'm hell-bent on finishing this challenge, and the extra exercise has really helped my body.

I know that a huge part of my feeling really great also has to do with being off of antibiotics and that's a bittersweet feeling. The fact of the matter is that I would not be here without long-term antibiotics. My body was shutting down. But how many of my "Lyme" symptoms were actually just side effects from the medicine?

It's frustrating to not be able to discuss all this with my Lyme doctor, but the insurance issue should be resolved this week (fingers crossed!) and then I can tell her what's going on. It's an unpleasant feeling for me to think that I was so sick that I was ready to get a PICC line, and now I'm doing very well without antibiotics at all! Ugh....

As I said, this whole insurance thing--while it has been a nuisance--has been a blessing in disguise. There's a new Lyme test out that tests for the actual Lyme spirochetes as opposed to just antibodies for the disease like other tests, but you have to have been off of antibiotics for at least a month to do the test. I was taking Samento, which is a natural antibiotic, so I have to wait about two more weeks for it to be completely out of my system, but I'm pretty sure I'm going to do the test. The downside is that it is expensive (around $600) and not covered by insurance.

A pony hug a day keeps the doctor away!
While I'm feeling a lot better, I'm not symptom free. I have daily reminders that Lyme disease and co-infections are still lurking in my body, but I'm really hopeful that my immune system has kicked into high gear and can handle the threat. I'm relishing better days and hoping with all the hope in my body and soul that it lasts!