Friday, February 26, 2010
A fellow LymeFriends member wrote to ask me a great question, and I thought it might help to post it here.
She is considering trying for a baby soon, but is concerned about morning sickness with Lyme and wondered if it intensifies when you have Lyme and co-infections.
Here's my response:
Truth be told, I've been a little out of commission due to morning sickness.
This is my first child, so I have nothing to compare it too, but I'm not going to lie. The morning sickness has been rough, and having Lyme on top of that is no picnic. I threw up for the first two months and then told my doctor that I was so weak and couldn't stand it anymore. She put me on Zofran and it has helped tremendously. Completely safe for the baby. They give it to chemo patients, so I figure it must be some good stuff.
I try to take as few drugs as possible, especially with baby on board, but I feel like this assistance is completely worth it. I still have nausea during the day, but the Zofran takes the edge off so I am able to function, and right when I hit the three month mark I stopped throwing up completely.
If I keep healthy (Lyme friendly) food in my stomach at all times, the nausea is not that bad. Water with lemon has also helped.
The hardest part is staying away from the crackers and carbs! Starches have always helped settle my stomach, and I find myself wanting toast when I'm sick. In this case, if I eat bread, I feel better immediately, but it hurts me more in the long run (by the end of the day I'm shaky and I feel bloated/heavy/gross). I just stick to foods that resemble bread, like brown rice and quinoa, and that's only if I can't stand the nausea anymore.
Fatigue has been pretty bad, but it's lessening now (at 16 weeks weeks). I try to look at it this way: we're so used to fatigue--bring it on! You're probably going to have a combination of Lyme fatigue mixed with pregnancy fatigue, and to me, it's impossible to tell them apart. Both make life difficult. I find that it's easier to accept the fatigue now because it's for a good cause. Lyme fatigue = woe is me, I'm hating life right now. Baby Lyme fatigue = it's ok, because this means that my baby is growing the way he/she should!
As soon as I show signs of fatigue, I sit down immediately and rest for just 15 minutes or so. (If I need more time, I take it) I find that the more I push myself, the quicker I crash, so being proactive is key. Little rests here and there and I can function all day.
On a scale of 1 to 10, 1 being the easiest, this pregnancy so far has been a 7. It's a high number, but I'm just being honest. But again, it's getting better now that I'm in the 2nd trimester. I'll also say that I would do it again in a heartbeat, because love for our children is much stronger than discomfort, and it's totally worth it!
Wednesday, February 24, 2010
Still without a PICC line. This is week three of of the waiting process. It's also week one of having no antibiotics in my system. This is not by choice; It's due to the fact that I can't get a single one of my doctors to work together, nor can I even get a call returned.
I have one of the most reputable Lyme Disease doctors in the country, and if I wasn't pregnant right now, I'd fire his ass and start the long, expensive search for another doctor.
My issue is simple: I need antibiotics asap to protect the baby and to continue with my treatment. I call my LLMD to get a refill on my orals, because some drugs are better than no drugs while we we wait for the insurance stuff to clear up. They say they will work on it. Days pass, and there's still no Rx called in. I email the PA in the office, explaining how important it is that I get some meds refilled. I also explain to her that my symptoms have worsened. I'm having trouble maintaining a normal heart rate, which is scary. (My pulse goes from low 80s to 52 bpm within a minute or two, which makes the room spin and my peripheral vision go black. I'm also a neurological mess. What should I do?
I also express my concerns: High risk doctor staff admits that they're unfamiliar with the IV treatment/insurance process. Insurance has already denied two appeals, and now our final hope is to submit an appeal in writing. It will be kind of hard to write the ridiculously detailed and legal savvy letter I need when the person writing it doesn't even have a list of my current symptoms.
Why don't they have that info? Because no one returns my phone calls on either end. The doctors offices are not talking to each other, and I'm sitting around powerless waiting for someone to do something. Keep in mind, I am not being a pushy jerk about this. I am always friendly, but firm and fair. Maybe I should change my tune? After all, I pay both doctors way too much money to have to put in this much work by myself.
In the end, I ask the PA for one thing: Please write an adequate letter for me to submit to the insurance company, because her letters have worked with insurance in the past, and she knows my case more than the new high risk doctor does.
I asked this a week ago. No response. Again, two appeals have been denied since then, and I need her help.
After all that, the PA writes back yesterday (a one-line email): "I will finish a letter for you as soon as I can and contact Dr. ______'s office. Since he is the ordering physician, his staff will have to handle their end."
Wow. Thanks for the detail and for addressing my concerns. PS: She will not give me more antibiotics since high risk doctor is dealing with that stuff now.
So, today I will make my daily call to the high risk doc to deliver the news that LLMD will not supply oral antibiotics, and that it is his responsibility now to call in the drugs I need.
I'll also let them know that there should be a letter from the LLMD coming in that will help with the appeal, but I would like to speak with someone at the office to provide some information and documentation that will help win the appeal. I also want to report my symptoms, because they are getting worse.
And like they tell me every day, the doctor or a nurse will call me back this afternoon to discuss this and give me updates.
Sure they will.
In the meantime, I've priced out the out-of-pocket treatment cost, because I know I'm going to get denied this next appeal (let's face it, that letter's not gonna get there in time), and we can't wait around much longer.
Over $15,000 for 5 months of antibiotics and a once-a-week nurse visit. And the company won't "bill you later." You pay the $650 weekly, or the meds and nurses don't show up.
Believe it or not, I've called a bunch of places, and this is the cheapest, best offer. Well, the only one that does not sound creepy and completely ghetto.
I'm finding it harder and harder to keep a positive attitude about all of this. Pregnancy should be a joyous occasion, and I'm having panic attacks daily.
Things will get better soon right? I'm about out of hope here...
Friday, February 19, 2010
My PICC line appointment for this morning got canceled.
Insurance company approved the line but denied the drugs and the home treatment.
That's a hell of a lot of money we don't have right now, so we will fight it.
In the meantime, I'm waiting by the phone for any word from the doctor about the appeal we're making.
Not that I'm in a hurry to get stabbed with needles, but I'm completely out of antibiotics and this little baby needs to be protected from the evil spirochetes.
Plus, my bones hurt and I'm twitching up a storm (which makes me look silly) so the sooner I'm treated, the better.
Time to buy a winning lottery ticket or just keep my fingers crossed that my insurance company decides to stop being stupid and actually do what it's supposed to do.
I'm not holding my breath for either.
Monday, February 15, 2010
When I contracted Lyme around 1997, I blew up like a balloon. I went from being an average sized young woman to an unhealthy 200+ pound porker in what seemed like a few months. It killed my self esteem and confused me. I wouldn't get a Lyme diagnosis for another 11 years, so all I knew was that I was too tired to work off the mysterious weight, and no matter what I ate, I only got bigger. On top of that, I felt like crap, was taunted about my size, deemed a heifer by guys, and that hurt.
Fast forward to 2003. I had my first serious full blown Lyme attack, which paralyzed my legs and arms and put me in the hospital for weeks. I was misdiagnosed as having Guillain Barre Syndrome, given some serious doses of IVIG, and after I left the hospital, I did some physical therapy.
Looking back, I realize the IVIG must have killed a lot of the Lyme bugs, because I slowly felt better. I had a new outlook: I was given another chance at life, and I was going to be as healthy and happy as could be. Exercising was slow at first and sometimes really painful, but I became so obsessed with feeling and looking great, that eventually I was running, lifting weights, and doing pilates like all of the women I had previously loved to hate.
The picture of my mom and me (above) was taken in 2005 when I was at my "healthy" peak. I vowed that I would work hard to maintain this for the rest of my life. I'd gone from a size 20 to a loose size 4. It took over two years, but I did it the right way and it was worth it.
Then that bastard Lyme came back into my life as quickly as it left. Over the past 5 years, I haven't put all the weight back on, but I am about 25-30 pounds heavier due to inactivity. Now, on a good day, I change out of my yoga pants, put on jeans, and go to the grocery store. If I'm feeling stellar, I can walk at a pace of 3.0 on the treadmill for 15 to sometimes 30 minutes, but I pay for it later.
Here's the issue:
I'm ok with the slow gain. I understand why it's happening, and I have tried hard to be kind to myself. Physically, I just haven't been able to move around like I did in the past. Someday, I will be in full remission, and I will run my little heart out until I get that runner's high I miss so much. I won't be ashamed to go out in public, see my friends, or have that fear in the back of my mind that everyone is noticing how much weight I've put on.
But now I'm pregnant. In addition to the slow gain, I have the fast gain. As ridiculous as it sounds, I always pictured myself as the "fit" mommy to be, in great shape with a big round belly and no other flab. Yeah, I know. That rarely happens, even with people that don't have a chronic illness. I also happen to be the queen of high, unrealistic expectations when it comes to setting goals for myself.
And that leads us to the point of today's post: disappointment mixed with a little bit of irrationality. I'm feelin' it.
It happens to the best of us, but we can't let it keep us down.
When we are chronically sick, we are at higher risk of being depressed, feeling trapped, and isolated. Add the insane, unpredictable hormones of pregnancy and it's a recipe for disaster.
If you're pregnant and you find yourself hating the way to look, feel, waddle, jiggle, or what have you, it's pretty normal (from what I've read). I've even Googled, "I hate being pregnant," just to see if I'm the only bad mommy on the planet, and it turns out I'm not. Go ahead, try it. Some of the women who post on the forums are hilarious, and when you're having a "just shoot me" moment because your pants won't zipper, it helps so much to know you're not alone.
And when that evil, irrational Lyme/hormone voice starts chirping in your ear, please do yourself a favor and tell it to shut up. Seriously, whatever you do, don't listen to it. Instead, do something that makes you happy*. Browse for cute baby stuff online, watch a funny movie, or read an inspiring book.
During tough times we need love and understanding, and it means a whole lot more when it comes directly from ourselves.
Now on to the hard part: practicing what I preach...
*Note: Based on a recent experience, avoid relaxing baths when you're hating on your thighs/butt/gut. Wait until you're feeling strong enough to truly accept those new curves. Otherwise, you'll feel like a manatee in a kiddie pool. If you have one of those sweet jacuzzi bathtubs you can sink all the way into, it's all good. Just remember to invite me over so I can use it when you're finished!
Saturday, February 13, 2010
The high risk doctor called yesterday. 6:30 on a Friday evening! (Props to you, doc, because every other 9-5 practitioner in America was home already.)
Here's what I learned: When being treated for Lyme, if you wait around for busy practices to do things on their own, it can take weeks, even months. If you call about a status update, it takes a few days. If you can score an email address of someone in the office and express your concerns about time management in writing, stuff gets done. Fast. (For the record, I'm always super nice, just honest. Angry calls/emails get you moved to the bottom of the pile.)
Long story short, after I wrote my LLMD's assistant to say, "Hey, it's been a week, let's get the ball rolling," we had a new treatment plan set up the very same day.
More stuff I learned: Since I'm pregnant, my LLMD doesn't want much to do with me. I don't blame him. I imagine if something happens to a baby during treatment, some people might sue. Plus, I keep in mind that he is a Lyme expert and doesn't appear to know much in the way of baby growing. Fair enough. Until this baby exits my body, all treatment will go through the high risk specialist. (I had an "ah-ha!" moment when I found this out. When my LLMD started getting vague and kept pushing for me to see this specialist, it was because he wanted to pass me off asap.)
So here's the deal: High risk doc already put in the IV order with my insurance company. Because he is considered a "real" doctor (meaning he's not one of those cooky-off-the-wall "Lyme" doctors), the approval process is easy (I'll believe that when I see it) and takes days as opposed to weeks. High risk doctor believes that I will be in the hospital getting my PICC line* by the end of next week. (Woah that's fast. A little little too fast for my liking, even though I complained yesterday about the waiting game.)
I'll inject 2 grams of IV Rocephin a day and I'll have a nice home nurse to help make sure I do it right.
* A PICC line (peripherally inserted central catheter) is a long term IV that's inserted in your inner arm. It goes in where you'd normally have blood drawn, but there is a catheter connected that runs up a vein to your heart. This allows the liquid antibiotic to be delivered right to the superior vena cava, where it is most effective. It's a pain in the ass, and it's a little sore and uncomfortable at first as it heals, but it should never be too painful. You don't feel the catheter, even as it travels up the vein. It just looks long and scary when you see it for the first time.
Once it's in and healed, you forget it's even there and treatments just become second nature. Side effects of some of the meds, however, are a different story for another time...
**Photo byPinkfud on Wikipedia
Friday, February 12, 2010
Making the leap from 6 weeks to where I am currently. I took my LLMD's advice, and on Monday saw a Lyme Literate OBGYN for my 13 week ultrasound/consultation.
I admit, I should have seen him much earlier, but I was scared. I've had so many disappointing/anger-inducing experiences with new doctors--they look at me like I have three heads when I want to discuss the details of Lyme or when I have very specific questions that involve big medical terms. I hate feeling like I'm being rushed, or worse, placated, which also happens more than it should.
My excuse was, I wanted to wait until we reached the three month mark so I could make sure that this was going to be a viable pregnancy. I already had a group of mommy doctors I loved (though they aren't well versed in Lyme) as well as my LLMD. Why did I need a third doctor?
Let me tell you how happy I was after I got over myself and saw the high risk specialist.
First, the ultrasounds at these offices are much different. Mine lasted almost an hour, because they wanted to check every organ. That didn't bother us at all, as we're gushy new parents who say stupid things like, "Oh my god! Look at those cute little kidneys!"
It's amazing how they can check on something so small (even the four heart chambers).
I left the room feeling totally confident that our baby has a clean bill of health so far. Every bone is where it should be; every inch was measured properly.
Then we got to the actual consultation part, and I was pleasantly surprised. This guy really knew his stuff. I wasn't ashamed to discuss symptoms or ask any questions I could think of. He took his time and actually listened. (Now I know 1 out of every 30 or so doctors actually cares. Sweet!)
Before we even started talking, he took one look at me and asked, "so when did the neurological issues start up again?" Apparently, I'm not looking so hot these days. Or he was tipped off by the the fact that I was basically lying on his couch like a psychiatric patient because I couldn't hold my head up any longer.
I prepared a page-long list of symptoms to go over with him, and I didn't even need to pull it out of my purse. Within 2 minutes he determined that the oral antibiotics I'm on now aren't effective anymore, and I need to be on something stronger, specifically IV treatment. (I KNEW that PICC line was coming around again...) Normally, it would take a long while (and a good argument) for me to climb aboard that ship, but he asked all the right questions, and for the second time ever, I trusted the guy immediately.
For a while I've felt as though I'm slipping, and I know in my heart that the pills alone aren't working. I see where my LLMD is coming from by not wanting to make drastic changes with baby on the way, but after much discussion, we are all agreeing that without proper treatment and protection for the baby, the outcome could result in a Lyme baby.
So now we play the game I hate more than anything in this world. It's called the waiting game. High risk doctor has to get a hold of LLMD, who has to get in touch with my regular OBGYN. (I checked on the status today, and 5 days later, the initial phone call hasn't even been made.)
Then LLMD has to write up a big letter to the insurance company, telling them how terribly sick and incapacitated I am so that they will preauthorize the expensive treatment. Two weeks later (at best) I will get denied and we will appeal. We will try again until I'm approved.
I'll wait for a hospital outpatient appointment so that I can get the PICC line inserted, and then I will wait some more to get a home nurse set up so we can get this IV party started. My guess is that I'll start "real" treatment around April. I hope they prove me wrong.
Thursday, February 11, 2010
My questions (with paraphrased answers) from our first LLMD (Lyme Literate Doctor) pregnancy visit (at 6 weeks pregnant):
Q: You're totally mad at me for getting pregnant right now, aren't you?
A: No, but he wished I'd waited a little longer to make sure my body was ready and the Lyme was in check (In all honesty, he seemed a little irritated.)
Q: Since the Lyme is all of a sudden active, (as opposed to the last pregnancy when I was feeling ok) will I pass it on to the baby?
A: It would be hard to pass it on to the baby since I've been in treatment for so long. The highest chances of passing it on come from acute Lyme cases (when the mother is bitten while pregnant). The baby will also be protected because I will be on antibiotics for the entire pregnancy.
Q: Are the antibiotics safe for the baby? It won't come out with 5 arms or anything, will it?
A: Entirely safe, as long as they are on the approved list of antibiotics. The Zithromax I am on is safe. A lot of drugs in the penicillin family are safe (though I am allergic to Penicillin). No Biaxin or tetracyclines. My baby will not have 5 arms. (Phew.)
Q: What's better, oral antibiotics or IV?
A: IV is always better, because you lose a lot of the pills' effectiveness as they're digested. With IV, more will cross the placenta.
Q: So there's another PICC line in my near future:
A: Not in my case. There are only a couple IV safe drugs to use, as I'm allergic to penicillin. I had trouble tolerating a lot of the IV antibiotics I was on last time, and the he wants to play it safe/not rock the boat with baby on board.
And even though I have an OBGYN I love, I should consult with a Lyme Literate OBGYN (who happens to be only an hour away) to make sure we're taking the right steps in terms of treatment
Q: I'm in crazy amounts of pain. Can my baby feel this?
A: No. The baby is well protected floating around in there, and it doesn't share my neurological symptoms. I have nothing to worry about in that department
Q: Have you had pregnant patients before?
A: Yes, very many. One baby was just delivered last month. Happy, healthy.
Q: Have you had any tragic Lyme baby losses:
A: Knock on wood, no, not yet. If you are being treated, you will be fine.
July 4th, 2009 was full of fun and fireworks. Little did my husband and I know that we'd conceived our first child.
I'd just had my PICC line removed in May after six months of IV treatment. I was able to get around again and had even started driving after what seemed like a year of sheer, shut-in hell. My drug list was cut significantly, down to only 500mg of Biaxin twice a day, some thyroid pills, and my herbal supplements.
When I got the positive pregnancy test, I was shocked, super excited, but mostly scared that I wasn't healthy enough yet for a child and immediately felt guilty like we'd just done something very wrong. When we went to the doctor again for an ultrasound at nine weeks, she confirmed two things: we'd made twins, but they didn't make it. I was scheduled for a D&C two weeks later when they didn't want to pass. They didn't test the embryos, though my doctors believe the miscarriage was due to chromosomal issues and not Lyme related.
My husband and I were devastated. We'd previously been reassured by my LLMD that it was perfectly safe for me to have a baby, as long as I was treated throughout the pregnancy with pregnancy safe antibiotics (he'd switched my to 500mg of Zithromax as soon as we found out we were pregnant).
We were ready to try for another baby right away. Three months went by with no luck , but then something terrible happened. I relapsed. My LLMD speculated that the amount of mental and physical stress from the miscarriage was too much for my body, and I needed time to get my body back in balance.
Symptoms were bad. I had trouble feeling my legs. Sometimes my hands wouldn't close or I coudn't move my toes. Tourettes-like twitches, joint pain, bone pain, blurry vision, extreme fatigue, poor circulation, ear and tooth pain, which meant my brain was starting to swell again. I won't list everything, because I don't want to sound like I'm complaining. Let's just say that it was time to put the baby making on hold for a while until I figured out what was going on with my body.
Yep, you guessed it. Too late. Within in a week, I tested positive on a home test. I'm not sure if the sudden onset of symptoms was due to fertilization or if it was just Murphy's law...
Either way, I was pregnant, sick as hell and scared to death.
I considered starting this blog many times, but I wasn't sure that it would be useful. Then I Googled "Pregnancy and Lyme Disease" for the millionth time and was appalled, yet again, at how little information there is on the subject. What's even more disappointing is that the majority of articles written haven't been updated since the early nineties, and a hell of a lot has changed since then.
I frequent the Lyme forums and sites that are available, but to be honest, as comforting as it is to talk to others who are in the same boat, I get frustrated with the countless people who are adamant about their treatment protocols, claiming that, "this way is the right way...you must exercise even if you feel like dying...you must not exercise at all...what you need is a good coffee enema...IV treatment is the way to go...you're on too many drugs--keep it natural..." It goes on and on.
That said, I don't know the magic secret to curing Lyme Disease, especially when it's chronic and so late in the game our bodies are destroyed. Sadly, even with all the current medical advancements, there's still so much to learn about the disease, and it's just now starting to be taken seriously. That's why I'm not going to offer my medical speculation. What I can do is offer my story as it unfolds, in case any of you find yourselves pregnant in the midst of the nightmare that is Lyme Disease.
I'll go through nine months of symptoms, fears, accomplishments, setbacks, treatment, and I will report back, word for word, what I learn from my doctors about Lyme Pregnancy.
Stay tuned and enjoy the ride!