Pregnancy, Birth and Lyme Disease

After being in remission from Lyme disease and finally getting off of antibiotics at the beginning of this year, I found out I was pregnant so I had to get right back on antibiotics to help prevent the Lyme from crossing the placenta. I'll have to admit, it was hard swallowing those icky tasting antibiotics* again. I questioned if that was really all it took to save my baby from this dreadful disease.

Although it was a very difficult pregnancy, my health held up wonderfully well throughout the entire pregnancy. In the third trimester, my Lyme doctor wanted me to add Azithromycin in, but when I did, some of my Lyme symptoms came back, which panicked me since I had been totally symptom free. I immediately stopped taking it and the symptoms went away as quickly as they had arrived. My doctor said that was a pretty strong indicator that my symptoms would come back after the birth.

My baby was born peacefully at home on November 1st, 2013. 

My sweet little baby girl is now one month old. Every day, I've looked into her perfect little face wondering if I passed my Lyme disease to her. After her birth, we sent off a sample of her placenta to be tested by a tick-borne specialty lab (Igenex) for Lyme disease. It's been a long four weeks of waiting, but...

...we got her test results back today and SHE'S NEGATIVE!! 

Unfortunately, my doctor was right and some of my symptoms have come back since the baby was born. My visual problems are back (it's like a fog on my glasses that won't wipe off), which was my very first Lyme symptom, and I have mild joint pain. I'm still taking Ceftin, and I had no other choice but to give the Azithromycin (the antibiotic that I couldn't handle during the pregnancy) another try. I've been on it for a little over a week now, and my joint pain is much better and my energy level is back to normal. I'm still struggling with the visual problems, but it's better than it was before I got back on Azithromycin, and I'm hopeful that it will continue to work its magic and that this protocol will be enough to keep my symptoms under control. 

**I did Bicillin injections for the first trimester and took Ceftin for the remainder of the pregnancy

Happy Thanksgiving

This Thanksgiving, I'm thankful for my miracle:

Up until very recently, according to the CDC's website, there were around 30,000 cases of Lyme disease reported annually in the United States. In the last few months, however, the CDC released an explosive statement saying that reports are showing that the number of cases is at least 10 times higher, making it closer to 300,000 cases of Lyme disease a year.

The CDC has always taken the stance that all cases should be treated with 2 to 4 weeks of antibiotics. Shunning the idea of chronic Lyme disease, they came up with their own fancy term for it: Post-Treatment Lyme Disease Syndrome (PTLDS). Now, if you mosey on down to their website and pull up the page on PTLDS, the first thing you will read is this, "Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches."

Hold your horses, now! Remember, the CDC just updated the number of cases to at least 10 times higher. So now, instead of 10 to 20% of the much dinkier 30,000 purported cases annually, that's now at least 30,000 to 60,000 people a year who are not responding to the recommended 2 to 4 weeks of antibiotics!

I remember pausing and reflecting at the four week marker in my treatment. I thought to myself, "This is it; according to the CDC, this is as good as I can ever feel." I shudder to think about what would have come of myself if I would have accepted that fate.

But I'm one of the lucky ones; I've been in remission for almost ten months now and not a day goes by when I don't think about how lucky I am to have had a doctor who was willing to put her job on the line for me and others like me. She was fired this summer for treating her Lyme patients with more than the CDC recommended 2 to 4 weeks of antibiotics, despite the fact that patients like me are now symptom free and pain free for that very reason!

I'm more than ready to hear what the CDC plans to do about the 30,000 to 60,000 of us annually who don't get better with 2 to 4 weeks of antibiotics. Because, quite frankly, this (taken from the same link above) is absolutely unacceptable: "Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."

Update...Finally!

Hello, all! I never intended to take a hiatus from blogging, but sometimes life has other plans. To get you back up to speed, here is what's going on with my life:

I'll start with the hardest part first. My doctor lost her job for treating Lyme disease. I wanted to honor her with a fabulous post about the injustices of what happened, but I think I'm going to need a little longer to heal from my anger and pain at the medical community for firing her before I am able write an unbiased post that can help raise awareness for Lyme disease. (If you're reading this Dr. P., I will keep my promise! It's just taking more time than I thought.)

My health is holding up fairly well during this pregnancy. I am 30 weeks pregnant now! I am still in remission and seeing a new Lyme doctor who is treating me with antibiotics to prevent (hopefully!) my Lyme from crossing the placenta. The baby is a little girl, which I am thrilled about since I have two boys already!

Here's me on vacation a few weeks ago.

After spending month upon month sick beyond words and not knowing if I'd ever get better, I just can't believe where I am at in life right now. I always felt like someone was missing from our family, but I really thought that door was shut forever because of my illness. Life had other plans for me, and this is truly my miracle baby!

Here's my little sleeping beauty.

I also just started homeschooling my youngest son for Kindergarten last week, so I've been very busy. I am so excited to be able to homeschool again! I had been homeschooling my oldest son when I got very sick from Lyme disease and had to make the difficult decision to put him in public school. Thankfully, he adjusted very well and is quite content stay put in public school while I homeschool his brother.

There's a lot more I'd really like to say, but I just want to get this update out and break my accidental, unintentional absence from the blogging world!

Well, If You Mustache...

Oops, I just realized it's been over a month since my last post! I'm still in remission from my Lyme disease, still feeling great, and for the first time in as many years as I can remember, I am pain free--something I never expected to be able to say, since I developed symptoms of Lyme after my first tick bite as a child in the '80s. I do live with the fear that my disease could come out of remission at any time and that's a scary thought, but I am choosing to focus on the present, and right now that means I am healthy and loving every second of it.

I apologize for the huge lapse in posting, but there's a pretty big reason for it.

I am 12 weeks pregnant with my third child! Lyme disease causes a high rate of miscarriages, so I've been walking on eggshells; it's been a terrifying, but exciting few months.

Even though I am in remission, I am on antibiotics to prevent the disease from crossing the placenta. I enjoyed my brief hiatus from antibiotics, but I'm back on Bicillin intramuscular injections (shots in the butt). I did not know I had Lyme disease during my other two pregnancies, and both of my children have tested positive for my tick-borne illnesses.

The thought of potentially passing this disease on to a third child has been a heavy burden, as this baby was a very wonderful surprise, but knowledge is power, and this time we know what we are up against. Even though I'm on antibiotics, I could still pass it on; however, I take comfort in the fact that my Lyme doctor is incredible and I have the very best care out there.

After all that I have been through these past few years, I still need to pinch myself every day--I can't believe I am healthy, pain-free, and carrying new life! To my Lyme friends out there who are struggling--never, never give up! Your miracle could be right around the corner! There were so many days when I never thought I would get better; so many days when my pain was so excruciating I wanted to quit. But if I had, I would have missed out on my miracle!

Well, I'm signing off now; my brand new extra-light weight/extra big pregnancy hula hoop just came in the mail and it's calling my name! :)

Remission

Earlier this month, a few close friends helped me celebrate three months symptom free--REMISSION--from my Lyme disease! It was such a good weekend! I'm so grateful to have such wonderful people in my life who have been there for me through the good and the bad!

Remission with Lyme is a precarious thing; the rug could be pulled out from under my feet again at any time, and that is a scary thing, but I choose not to dwell on that. My goal is to keep my body and my immune system in tip-top shape. I am not a morning person, but I'm learning to use the mornings in way to set a positive tone for the rest of my day.

I start off each day with a healthy breakfast--usually steel cut oats with blueberries, and I wash it down with a kombucha in a fancy glass. Steel cut oats take about 20 minutes to cook, so after I've checked on our pet Sea-Monkeys (!!!), I use the rest of the 20 minutes to hula hoop, my favorite way to exercise. I can't emphasize what a big difference exercising in the mornings has made in my day. I have so much more energy the rest of the day.

If I'm not careful what I eat, I pay for it: My muscles ache so badly and I feel very lethargic.I have such a sweet tooth, and trying to keep my sugar consumption under control has been my biggest hurdle. I've been trying to use my juicer at least a few times a week.

I'm still going to keep blogging even though I'm in remission, but probably less frequently. I wish you all the best!

Snow Globe

If I close my eyes, I can still see myself--that little blond-haired, blue-eyed girl with the lop-sided dimples--mesmerized by one of my grandmother's pretty little musical snow globes; tiny fingers, touching the enchanting tiny, magical world before me. I can see myself, standing there, breath fogging up the make-believe world precariously balanced in the palms of my clumsy, childish hands. Suddenly, ferociously, I shake, and everything is covered in a blanket of softly falling snow and I'm lost in the tinkling music.

The music stops, my eyes open and here I am--now a dark-haired, blue-eyed woman, peering out from behind thick glasses--so far away from that little girl, full of magic and wonder. Yesterday, though, I went sled riding for the first time in many years. There I was, barreling down the hill, roaring with belly laughs and with happy tears streaming down my cold, rosy cheeks. The little blond-haired girl in me came out to play for the first time in a long, long time and reminded me how much I had missed her. 

It's hard to think of yourself as an innocent young child, knowing all that life will throw at you in the future. Battling Lyme disease is the most difficult thing that I have been through and I know that I will have to go through many, many more difficulties, but that is what makes life so precious and all the more worth truly living: the beauty, the love, the triumph. 

Life is so-often a struggle, and it's easy to let our difficulties steal the magic of life away from us. But, there's a child who remains in each and every one of us, triumphantly shaking that snow globe, waiting for the magic, waiting and hoping to come out and play again; to once more find the beauty in the little things. 

So what are you waiting for? Shake, shake, shake that snow globe and let life's magic fall upon you. You're never too old to be young again. 

Victory

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...

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!

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!