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Pregnancy & Lyme Disease: All The Info About Gestational Lyme Disease

10/28/2015

4 Comments

 
A question I receive in my inbox rather frequently is, "is it safe to have a baby when the mom has Lyme disease?" This question is really complex, and I have found that people are either staunchly against it, or strongly support it; this post is not meant to take either side. Instead, I set out to find and compile all the research pertaining to Lyme disease and pregnancy and organize it in a way that can be easily accessed. It is however not intended to be medical advice, so always consult your Lyme Doctor on this issue, even if you are in remission.

I know Lyme patients my age who got the disease from their mother in utero because their mother did not know that they were bitten by a tick during their pregnancy, or did not know that they were carrying Lyme disease prior to getting pregnant. There are many unfortunate and heartbreaking stories like this, most recently the story of John Cauldwell and his entire family being diagnosed with the disease. Lyme disease is such a stealth pathogen that women with vague symptoms can have no idea that they are ill, and through no fault of their own unknowingly transmit it in utero. This is why it is so important for women who do know they currently have Lyme disease to get pregnant only under the care and advice of a Lyme literate doctor. But we will cover this topic and others more in depth below.


If you are a healthy pregnant mother who gets bit by a tick during your pregnancy, what should you do?
This is an issue that most LLMD's agree on with the CDC, and they both stress that prompt treatment is necessary as there are grave risks for your unborn baby. The CDC says: "Untreated, Lyme disease can be dangerous to your unborn child. Lyme disease that goes untreated can also cause you to have brain, nerve, spinal cord, and heart problems. With early treatment these complications can be prevented. If you suspect you may have Lyme disease, see your physician (5)." I would like to however add the edit of "please see a Lyme literate physician," and that's because the CDC only recommends 2-4 weeks of antibiotics, which we now know is not sufficient enough.

A Lyme literate physician will be able to help in the initial treatment and also follow you along the entire pregnancy afterwards to make sure that your baby stays healthy throughout. The other benefit is that after pregnancy you have a Doctor who knows what to look out for going forward postpartum if Lyme disease persists.

What are the risks to the baby if the mother does not seek treatment? Dr. Daniel Cameron MD detailed many different findings of such situations. Studies found that stillbirths occurred when the disease was contracted during the first trimester. Gestational Lyme Borreliosis was described in 5 of 19 pregnancies studied, resulting in cortical blindness, intrauterine fetal death, and rash (1-3). Another report attributes an infant death at one week old to a transmission of Bb from the mother, after the autopsy showed evidence of spirochetes in the spleen, kidneys, and bone marrow (2). A third report detailed a newborn death at 39 hours of life, with a left side hypoplastic heart and the presence of spirochetes also in the spleen, kidneys, and bone marrow. Borrelia was also able to be cultured from fetal liver tissue in 4 stillborn infants (4).

These findings prove the presence of Borrelia in the baby and go on to emphasize why treatment when bit by a tick during pregnancy calls for prompt measures. A Lyme literate doctor will work with you to find the right antibiotic regimen, and it is typically any combination of Amoxicillin, Cefuroxime, Azithromycin, and IV Ceftriaxone. All of these are safe for pregnant women.

Could I get pregnant if I already have Lyme disease? Is it safe, and can I give birth to a healthy baby?
For this question I consulted different physicians who are very well versed in treating chronic Lyme disease and have experience in this arena. One of these physicians is Dr. Marty Ross MD, who has his own Lyme practice and provides care to pregnant mothers. Dr. Ross advises that women with Lyme Disease can get pregnant, but they must know the risks and must take steps to prevent transmission. Lyme symptoms will typically improve during the pregnancy and worsen after delivery.

There is no single study which has followed large numbers of women to determine the actual Lyme transmission rate. However a review was conducted by T Gardner in 2001 and published in the Infectious Disease and Newborn Infant 5th edition. Gardner looked at 263 cases of pregnancy outcomes where Lyme was involved and found that 66 fetuses had Lyme. This suggested an approximate 25% transmission rate in pregnancy. However, this was a very small batch study, and it is likely that the actual amount could be much higher.

So what can be done to ensure that the Lyme disease does not transmit to the baby? The common treatment is for mothers to take antibiotics during the entire pregnancy. Dr. Charles Ray Jones MD, the leading pediatric Lyme Literate physician, followed 160 pregnant women with Lyme who took antibiotics before & during pregnancy. Of these 160 women, 5% of the babies born had laboratory evidence of Lyme transmission (in placenta cords or foreskin). These babies were treated, and afterwards all 160 women went on to have healthy infants.

The Lyme Disease Foundation in Hartford, CT also had similar encouraging results. The foundation kept a pregnancy registry for 11 years, beginning in the late 1980's. They found that if patients were maintained on adequate doses of antibiotic therapy during gestation then no babies were born with Lyme disease. Dr. Joseph Burrascanno MD, another leading LLMD mirrored this sentiment, and said that his experience over the last 20 years agrees with those findings.

The consensus seems to be that you can safely have a baby when you have Lyme disease, but it absolutely requires necessary precautions. You need to be able to commit to antibiotic therapy before conception and all the way through the pregnancy. This is something your LLMD will discuss with you so that you are prepared to make the commitment and ensure a healthy birth and a healthy infant. You also need to be prepared that symptoms typically flare considerably postpartum, and planning for that is also very important. If you have an unexpected pregnancy then make an appointment with your LLMD immediately, so you can get started on adequate antibiotic therapy as soon as possible.

Can Lyme Disease be found in breast milk?
According to Dr. Joseph Burrascanno MD, the answer is yes. Breast milk from infected mothers has been shown to harbor spirochetes that can be detected by PCR and grown in cultures.


The long term studies seem encouraging, but again, always see your Doctor prior to making any decisions regarding pregnancy and Lyme disease. There are clickable links to the information posted above throughout the post, as well as resources at the bottom. This is not medical advice, nor is it a medical opinion, but rather a gathering of facts from multiple studies and physicians to better help guide patients looking for information on pregnancy with Lyme disease.

xoxo,
Christina

References:
  1. Markowitz LE, Steere AC, Benach JL, Slade JD, Broome CV. Lyme disease during pregnancy. Jama, 255(24), 3394-3396 (1986).
  2. Schlesinger PA, Duray PH, Burke BA, Steere AC, Stillman MT. Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi. Ann Intern Med, 103(1), 67-68 (1985).
  3. MacDonald AB, Benach JL, Burgdorfer W. Stillbirth following maternal Lyme disease. N Y State J Med, 87(11), 615-616 (1987).
  4. MacDonald AB. Human fetal borreliosis, toxemia of pregnancy, and fetal death. Zentralbl Bakteriol Mikrobiol Hyg A, 263(1-2), 189-200 (1986).
  5. CDC.gov
4 Comments

Tiredness vs. Fatigue. It's Not The Same & Here's Why:

10/7/2015

6 Comments

 
When I was in college cramming for finals running on 3 hours of sleep I always assumed that was the most tired a person could feel. As I drug myself out of bed and headed to Starbucks for 3 shots of espresso I would mutter to myself, "I'm such a zombie, I'm so exhausted, this is terrible!" There is no denying I was incredibly tired, but what I didn't know at the time is that there is a difference between being tired from a lack of sleep, and experiencing tiredness on a whole new level; fatigue.

Fatigue: extreme tiredness, typically resulting from illness.

Tired: in need of sleep or rest.

When I got my first dose of fatigue first hand from my illness I couldn't find the words to convey what it felt like. The closest I came was, "It feels like I was hit by a semi" but even that didn't do it justice. Fatigue is such a deep whole body exhaustion that blinking is painful, and breathing feels impossible. It's like darkness crawled into every single cell of the body and depleted every ounce of energy. If anyone has every had mono then that would likely be the closest example that can make a fragment of sense. No amount of sleep can satisfy fatigue, and you wake up feeling like you never slept a wink.

So often I hear people belittle the symptom of "fatigue" in those who have a chronic illness. You can't see fatigue on a person, you can't touch it or make it be tangible & so people assume it must just feel the way they do when they're too tired.

If only.

If fatigue felt the way I felt after a week of cramming for finals in college I would be jazzed. Because the real fatigue is one that wins every battle; Will I make it to the shower today? Will I be able to walk to the kitchen? Fatigue decides. There is no mind over matter, there is no choosing to force yourself up. Fatigue is an intense exhaustion that rules all and controls all, even in the strongest of soldiers.

That's really important to note: Fatigue is not an optional feeling the way tiredness is. You can be tired, chug a Redbull or a coffee & power through a few more hours. Being tired doesn't stop you from completing normal daily tasks like taking a shower or washing the dishes. It doesn't feel good to push yourself when you're tired, but the difference is that it's non negotiable with fatigue.

When a patient with a chronic illness calls in sick for work, cancels dinner, or postpones any other plans because they are too fatigued, it's likely they feel as though every ounce of life was sucked out of them. It's easy for people to look down upon that "excuse," or feel as though it isn't valid. Coming from the perspective of someone who was once healthy I understand why. People think of what tired feels like to them and assumes that must be what tired feels like in an illness, so why can't they push through? Why are they so flaky?

I spent a long time blaming my own self and my own body for not cooperating better in regards to "being tired." I soon learned that the key word was "tired," and that wasn't what I was experiencing. I had crossed over from tired into the territory of fatigue, and that was a whole new beast.

A change in the stigma surrounding the word fatigue in regardless to chronic illness begins with acknowledging that there is a difference. I myself did not know the difference because so often in the English language we toss together words with similar meanings and use them interchangeably.

For the record, being tired from work or school or life is tough, and I don't ever want to take away from that. Mostly because I don't feel like the best way to educate on terminology is to belittle or pit "healthy" people against "sick" people. There is no competition, but sometimes advocates can create an "us" versus "them" dialogue which is damaging and unnecessary. Believe me, I remember being healthy and I still had my own set of very real problems & being tired from running on little sleep was 1 of them.

But it is important to make note that fatigue is not just that run of the mill tiredness you feel after a long week & remedy with a cup of coffee. Fatigue is crushing & leaves a person physically immobile, but not by choice.

If someone cancels plans or shares that they are struggling with fatigue in their illness I simply hope that this post could shed a bit of light on what that might feel like & how it impacts them. At the end of the day being tired & being fatigued are both pretty terrible feelings, so since its 2am here at the moment I wish a goodnight to all.

Xoxo,
Christina
6 Comments

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