Tuesday, March 30, 2010

Treatment Planning During Lyme Pregnancy

Pregnancy is full of surprises. Many of them are amazing and somewhat miraculous, for example, the strong bond that develops when a mother feels her baby kick for the first time. I cannot explain how exciting it is for me when I'm able to feel my little one swim around in there.

Unfortunately, pregnancy can dish out a few unappreciated surprises, as well. Lymie moms, listen up: your baby does weird things to your body in terms of changing its chemistry. Normally, changes in hormones affect moods, food preferences and aversions, complexion, you know the drill... but I didn't even think about how a pregnancy could affect how I'd tolerate medication for Lyme treatment.

When I found out I was allergic to I.V. Rocephin, I was disappointed but didn't think much of it. When I had a pretty severe reaction to I.V. Zithromax a week later, I was heartbroken, as that was the last drug I could try in I.V. form due to the pregnancy. I tolerated I.V. Zithromax very well during my first round of treatment last year. I was even on oral Zithromax until I recently got my PICC line inserted at the beginning of the month. So what happened?! Why am I reacting to everything right now?

According to my infectious disease doctor, I have my little one to thank. He doesn't believe it's a full on "allergy," but more of an immune response. Even though I got hives and had trouble breathing with both antibiotics, he feels like my body is rejecting everything foreign right now (which might explain why my symptoms have been so bad throughout this pregnancy--baby is foreign and my immune system is set to overdrive.)

In addition, if I cheat on my diet and eat bread, my tongue swells and gets itchy. Same happens with some fruits, and oddly enough, a few supplements I've never had problems with in the past.

I'm not saying all of this to scare anyone. My doctor cared for 8 pregnant Lymies last year, and all of them tolerated their meds (IV and orals) perfectly fine. All of the babies are healthy with no signs of Lyme or Autism. It just helps to know that some things that work for you pre-pregnancy may not be as beneficial to you once you're pregnant.

I'm sure the body balances itself out once the pregnancy is over, but that didn't make me feel any better as the doctor apologized and pulled my PICC line out. Months of fighting, pain, and heartache to get this thing in my arm, and it was over in a 30 second flash!

As much as I hate PICC lines, I'm actually mourning the loss of it right now, as it made me feel secure in terms of proper treatment. But I don't blame my doctor's quick decision to pull the line. In his words, it was best for both parties. I'm not putting myself or the baby in danger, and he can sleep soundly at night knowing he won't wake up to a morning newspaper article about how the hospital's head I.D. doctor killed a pregnant woman with an antibiotic overload.

Ultimately, this is all just preparation for parenthood, right? From what I hear, plans and schedules get sucked down the drain once a baby arrives anyway. From here on, I'm just going to improvise, and at this point, I'll focus on the happy surprises.

Monday, March 22, 2010

It's Worth It

Thought I'd share some happy news today. We had our 20 week ultrasound, and all is well! We're having a beautiful baby boy. He's a real fighter and a trooper, and I can honestly say that all of the Lyme struggles mean nothing the minute you see your little one. It has all been so completely worth it. I am in love.

Wednesday, March 17, 2010

Doctor vs Doctor vs Patient

It was bound to happen eventually. While at an emergency appointment today, I heard the dreaded words come from my infectious disease doctor's mouth: "There's no such thing as congenital transmission of Lyme Disease. There hasn't been a single case reported, and your baby has been completely safe from the start. I ordered I.V. drugs to treat your symptoms, not to protect the baby."

If you've done your research, and if you're like me and have had over ten years of doctors falsely telling you what's wrong with you and what isn't, you hear stuff like this and your claws come out. You want to verbally bludgeon that stupid doctor and school him on what it means to have Lyme disease in the year 2010. Then, after you beat him over the head with his 1980s reference books, it's safe to leave the office and find yet another doctor.

But not so fast...

I'm learning that it's a little different with baby on board. Please give what I am about to say a chance. I wish I had figured this out months ago, because it would have saved some time and stress. (The last thing a Lymie needs, pregnant or not, is more stress.)

LLMDs are a blessing. We become comfortable speaking with them, learning from them, and trading information. For the most part, we feel safe with them, and we trust them, as they've devoted their lives to studying and treating this awful disease.

However, nothing tears that security blanket to shreds like pregnancy. How hard was it to finally find a LLMD-- someone who didn't think you were nuts? Try finding a Lyme Literate mommy doctor. From my experience, it could take a hell of a lot longer than 9 months, and by that time it's too late.

So here's my thought: just compromise a little bit on this one. Not a single one of these doctors is going to be as well versed in Lyme as you are. Yes, that's pathetic, but thems the breaks for the time being.

I also had to learn to play games to get what I wanted. For instance, instead of calling my doctor an ignorant tool today, I smiled when he told me that Lyme is not congenital and said, "Well that's the best news I've heard this year, Thank God!"

See, in the state of CT, if an infectious disease doctor prescribes I.V. antibiotics for Lyme, insurance companies have to cover at least some of it. I need him right now, and I didn't regret petting his ego when I started my new I.V. Zithromax today. (I had a nasty allergic reaction to Rocephin.)

Obviously, if the doctor belittles you or gets out of line, by all means, find a new one. But if you are just looking for someone to work along with your LLMD, and this person happens to be a bit uneducated in the Lyme department, it's not the end of the world, as long as you have a trusted doctor to fall back on.

At best, you can opt for an OBGYN like mine (it might take a few interviews and some serious searching). She knows very little about Lyme, but when I spoke with her initially, she said she understands that it is becoming a huge problem, and that she is very open to learning more. She then had me explain what I knew.

When she didn't have answers to some of my questions, she did research/reached out to other doctors and got back to me. Not once has she undermined the disease, and ultimately, she has one job, which is to make sure this little baby is safe and healthy.

Again, not an expert by any means, but she is not narrow minded. I swear, there are some open-minded ones out there (but be emotionally prepared to find the jerks who will shoot you down, too).

Here are the questions I asked while searching for the doctor who would deliver our baby:

1a. I have Late Stage/Chronic Lyme Disease. I was misdiagnosed for over ten years, and I am still in the process of being treated by a Lyme Disease specialist. My symptoms are moderate to severe, and there is a chance I will have to be treated with I.V. antibiotics. (Add your own story.)So,

1b. Are you familiar with Lyme Disease, and if not, are you comfortable with working closely with my Lyme doctor to ensure this pregnancy and baby are healthy?

2. Are you able to answer questions about the safety of (possibly long term) antibiotics during pregnancy? Are you familiar with which ones are safe for baby?

3. Have you ever treated a mom with Lyme Disease in the past?

4. Symptoms set aside, my main concern is protecting this baby from contracting Lyme congenitally. Would you be able to help me explore my options to make sure this doesn't happen? (You will find out where the doctor stands with this question, and if he or she gives you the "your baby is fine" line, find a new doctor who is at least willing to recognize the use of antibiotics as a safety precaution.)

Disclaimer: I'm not a doctor. For all I know, the secret cure to Lyme can be found in chocolate chip cookies... so please take this advice with a grain of salt as you travel down your own path toward Lyme recovery.

Friday, March 12, 2010

Let the Fun Begin

I (finally) started IV Rocephin about a week ago. It's amazing how quickly things move along when you have competent doctors.

No serious reactions or side effects, which is always a good thing, though I experienced my first herx a couple of days ago. Compared to what I've experienced in the past, this one was very mild. Mild, meaning a few days in bed with intensified symptoms and a bad case of the twitches. It seems to have subsided some today.

A lot of people treat a herx like it's the end of the world. That's probably because it feels like it's the end of the world. A lot of people also mistake side effects of their meds for a herx reaction. Unfortunately, antibiotics can make anyone feel like they're permanently out of commission, especially when on high doses.

The one thing I can say is that, pregnant or not, herxing or not, you can't let yourself get too discouraged. It also doesn't help to whine about it. I'm not trying to be harsh; I'm just being honest. The more positive you can stay, the better your chances are of healing. Plus, it makes that down time in bed a whole lot easier to tolerate. The discomfort won't last forever! Use this down time to make some peace and give yourself a rest.

I'm not sure if this is purely a coincidence, but I noticed that since I've taken the time to really detox this time around, my reactions aren't as harsh. When I say detox, I mean simple things.

While I appreciate it when people are willing to try unconventional methods of detoxification (i.e. ionic foot baths, sweat suits, strange mixtures/elixirs of kitchen items that don't belong together, excessive supplements) I'm just not in that camp. I do realize that many of our systems are compromised and that detox is difficult, but for me, I feel like a few small steps will go a long way to restore balance in time. Patience is the key word.

I drink at least a gallon of water (with lemon) each day. I've been taking my magnesium, probiotics, thyroid pills, and prenatal vitamins. I make sure I scrub well in the shower. But most importantly, I don't eat crap food. By crap I mean anything packaged, dairy, or bready, even when it's falsely advertised as "natural and healthy."

I eat lean proteins, fruits, and vegetables. For grains I eat brown rice. Some people eat quinoa. (I can finally admit that I don't like the taste, so I say no thanks to that.)

The less our bodies have to work to filter out all of the crap we eat, the more energy it has to filter out the crap that Lyme and Co. leaves behind.

If all else fails, remember, all of this really is temporary.

Wednesday, March 3, 2010

Making Progress

I'm keeping this brief, because I feel like I got hit by a truck today, but I wanted to report that I fired the evil high risk doctor when he failed to respond to my complaint letter.

On Monday, I went for my four month OBGYN visit, and I was pleasantly surprised. I told the doctor my story, and she was so appalled by the high risk doctor's negligence, that within twelve hours, she pulled strings and had appointments set up for me to see a new high risk doctor, as well as the head infectious disease doctor at the hospital in my town.

She was even kind enough to tell me to call her after hours if I had any questions or just wanted to talk. I've never had such immediate medical gratification, and I certainly haven't had a doctor who genuinely cared so much. (If you are in CT and want the name of the best OBGYN in the universe, email me. I can also give you the name of a doctor to avoid at all costs.)

Infectious disease doctors are notorious for disagreeing with long-term antibiotic treatment. My LLMD even called to tell me that even though it was great news that I would see this new guy, I should be prepared to be challenged, as some of the "non-believers" can be "hostile."

I wouldn't say that I got warm fuzzies from the ID doctor, but he was far from hostile. Conservative, but kind is the best way to describe him. Regardless, he saw the twitching and wrote the order for all six months of IV Rocephin.

Here is something I learned that might be useful to you: In CT, it is illegal for an insurance company to deny coverage for Lyme orders written by an infectious disease doctor, neurologist, or rheumatoid arthritis specialist. (I'm too tired to fact check this right now, this is just what the doctor told me.)

So, tomorrow I am going to the hospital to FINALLY get my PICC line. Baby will be protected in no time, and mom might even start feeling better.

Monday, March 1, 2010

Letter to My Unresponsive Doctor

Still haven't heard from any doctors, even though I call them daily. I saw my regular OBGYN this morning (not Lyme Literate, but she has been the most amazing doctor to date and has turned into an advocate for me--she even called the high risk doctor while I sat with her in her office. Of course, the high risk doc is out of the office today).

In the meantime, since both LLMD and high risk clown are unresponsive, I was left with no option but to communicate in primitive form. Yes, I dusted off the old fax machine and complained in writing via a communication device deemed obsolete years ago. Hey, whatever works at this point.

In case you ever need to write a letter to your doctor, here's an example. I'll keep you updated on whether is was effective.

Dear Dr. _____ and Staff:

I am submitting this in writing, because it has been impossible to get any information from you or even get a phone call back. We are having some serious communication problems here, but before I get even angrier and find a new specialist, I am giving this one last try.

I saw Dr. _____ for a consult on Feb. ____ to discuss how to treat my severe case of Lyme Disease during pregnancy. We agreed IV Rocephin was the way to go, and I was told that I would have a PICC line in by the end of the week.

It is now March 1st, no PICC line, and I can’t even get a call back from anyone in the office to update me on the status of this order! _____ is avoiding my phone calls at this point, and I don’t blame her, as they occur daily. She hasn’t given me a bit of info to work with and insists that Dr. ______ will call me “today.” Today has come and gone for over two weeks.

I understand that insurance initially denied the claim and needed an appeal. However, I didn’t expect to be left completely in the dark as to what is going on with that appeal. Over a week ago, I called and told ______ that we will pay for the treatment! We just need to get it started. Why didn’t anyone respond to that?

I have called numerous times to say that I am completely out of antibiotics and that I need some called in. Dr. _____, my Lyme doctor, maintains that you are the ordering physician, and that treatment goes through you during my pregnancy, so I can’t get any help there. How scary is that when I can’t even get a call back about the antibiotics I desperately need?

Since I’ve seen you, my symptoms have taken a turn for the worse. I am now dealing with scary fluctuations in my heart rate (low 80s dropping to low 50s in minutes, leaving me on the verge of fainting). My muscles are so weak I need assistance walking and climbing stairs, and my migraines are so bad that I am vomiting. I have vertigo and double vision which prevents me from leaving the house unless it is an emergency, and I am twitching all day long.

It is bad enough that I am dealing with this with no assistance from a doctor right now. What’s worse is that there is a helpless baby involved, and I am ashamed for you for dropping the ball on this.

Something needs to be done now, and I need the following things to be addressed today:

What is the status of the insurance appeal?
How long will it take to have fully exhausted the process?
Have you been in contact with either of my doctors?
If insurance is a no-go I WILL PAY FOR TREATMENT. When can we start?
In the meantime, how much is it hurting my baby to not be on antibiotics, because I know the lack of treatment is hurting me. If it’s going to take a while to start IV treatment, will you please call in some orals?

Thank you for your assistance with this.
I don’t mean to be a squeaky wheel, and trust me, I hate calling you as much as you hate hearing from me, but I am out of options.
I am just trying to protect my baby and myself.
Please don’t continue to leave me hanging like this. Any info is appreciated.

I can be reached at xxx-xxx-xxxx
or on my second line: xxx-xxx-xxxx

We can make this right. We just need to get moving before I end up in the hospital again.

Thank you,