5 weeks Pregnant with Lyme: Compassion or experience desperately needed

Hello everyone. I am experiencing the darkest days of my life right now and I would love to hear some advice, compassion or if anyone has any experience with the following. I know this is a lengthy story, but I am so desperate to reach out. If you take the time to read, I thank you!

I'm 30 with chronic lyme. I'm newly married (6 months) and was only diagnosed a few weeks ago. My symptoms are primarily neuro and very scary.

As was the case with many of us, I was turned away by half a dozen doctors (and denied lyme tests even when I knew to expressly ask for them) before DEMANDING a lyme test and receiving an answer. To every doctor I saw, I told them that my husband and I were thinking of starting a family but I wanted to figure out my symptoms first. EVERY doctor before my LLMD told me to seek counseling and seek a naturopath but that I was not sick and I needed to move on with my life.

In September we got pregnant, then experienced a miscarriage at 6w3d. Doctor encouraged us to try again. We waited a month, and then I received my lyme diagnosis. We abstained from that moment on, but it was too late: I was already pregnant again.

I found out I was pregnant exactly 2 weeks after my diagnosis. For those 2 weeks, I'd been under the care of a LLMD who put me on gabapentin, an SSRI, and other medicines that worked wonderfully to treat my symptoms. I was also seeing an acupuncturist who was very helpful and had me on 2 powerful chinese herbs. I was going to wait until my neuro symptoms calmed down before I would begin treatment (antibiotics for a year with continuing blood draws and monitoring.) I felt powerful and in control and ready to fight. I began the Wahls Paleo protocol.

The pregnancy news was crushing. Our LLMD saw us that day and explained our options. She told us that we were in "medical outlaw country" and there was no standard of care. If we kept the baby, obviously all medicine to treat my symptoms would have to stop. (I stopped taking all medicine the moment I saw the test.) We could do some anitbiotics, or not, or try them for a while and stop, or wait and try, there is the possible Herx reaction to think of, antibiotics could save the baby from having lyme, or not, or harm the baby, or not....as I'm understanding is the case with this disease, there was NO clear answer or anything even close to a clear answer.

We decided in that moment to keep the baby and hold off on all treatment. After all, we want our baby. I must say that both my husband and I are very pro-choice and this is not an ethical choice for us. But this is a baby we wanted.

Unfortunately, the next day we had to fly across the country to spend the holidays with his family. Isolated in a tiny house in the middle of nowhere, with this family who has no idea what's going on and is not the most understanding of folks anyway, without my medicine and without my routine and the foods I need to be eating, my symptoms rushed back. Pain, tremors, spasms and the fatigue of being in my first trimester. The fear, anger and frustration overtook me and I found myself, for the very first time ever (until now I've been a very stable, active, incredibly healthy person!) scratching my face with my fingernails until it bled, leaving slashes across my cheeks. I've never done anything like that before, but the agony of all of this had to go somewhere. When I saw myself in the mirror, it finally hit me that I may not be well enough whatsoever to carry this baby. That thought brought both tremendous relief, AND a crushing feeling that made me think about suicide, about giving up. This has all been so much, so fast.

Without medicine to control my symptoms, I may not be healthy enough physically or emotionally to have this baby. My doctor believes I may have miscarried the first one due to lyme; there is a chance I could miscarry this one too, which is a big fear.

Perhaps when I am home, back in my routine, able to truly care of myself as best I can, I will improve and I will be healthy enough. If so, there's the enormous question of the baby's health. If it's born with lyme, how sick could it be, how bad could it get? Could antibiotics help, harm? There are no answers.

I understand that this is not something that anyone has answers to. I'm writing simply because I need to share my story, or I will go under. If anyone has experience with pregnancy and lyme, neuro lyme symptoms in general, or a baby with lyme, or perhaps having a healthy baby but they themselves were very ill, I would appreciate hearing them.

I am coming to you from a place of complete vulnerability. I ask you to please withhold your opinion about terminating a pregnancy if it comes purely from a moral/ethical standpoint.

I am currently 4 weeks, 5 days pregnant.

Thank you all so much for listening,

-SL

Hi Raincity,
Welcome to our community. I'm so so very sorry for all that you have gone through so far, but I do want to congratulate you on being newly married (YAY!) and for getting pregnant - even if it is under these circumstances!!

First you need to know - you don't have to go through your entire pregnancy without any medications. Are there certain risks to the unborn baby? Of course, but you aren't in the best of health to be able to avoid all of those meds either!! As you can see, life without any meds isn't good.

Another thing you need to know - no one knows how often these infections actually get passed from mother to baby in utero. I have adult children now that were carried to full term while I was infected with these diseases (40 yrs) and they show no signs of having them. So you are where you are in life. You are pregnant with your first baby and have just been diagnosed. There are options without mentioning terminating the pregnancy. You will have to be on the look out for symptoms in your child, but most Mom's are anyway, I suspect.

I have talked with quite a few mothers that have done very, very well on Amoxicillin to keep the baby as safe as possible from congenital Lyme - although it didn't heal them while they were pregnant, it allowed them to get through the pregnancy and not have as high of a chance of the baby having these infections.

Here is what Dr. Burrascano has to say about pregnancy and Lyme:
"It is well known that B. burgdorferi can cross the placenta and infect the fetus. In addition, breast milk from infected mothers has been shown to harbor spirochetes that can be detected by PCR and grown in culture. The Lyme Disease Foundation in Hartford, CT had kept a pregnancy registry for eleven years beginning in the late 1980s. They found that if patients were maintained on adequate doses of antibiotic therapy during gestation, then no babies were born with Lyme. My own experience over the last twenty years agrees with this.

The options for treating the mother include oral, intramuscular, and intravenous therapy
as outlined above. It is vital that peak and trough antibiotic levels be measured if possible
at the start of gestation and at least once more during treatment.

During pregnancy, symptoms generally are mild as the hormonal changes seem to mask many symptoms.
However, post-partum, mothers have a rough time, with a sudden return of all their Lyme symptoms including profound fatigue. Post partum depression can be particularly severe. I always advise help in the home for at least the first month, so adequate rest and time for needed treatments are assured. I also advise against breast feeding for obvious reasons as mentioned above."

Bottom of page 21 and top of page 22 in this article(which also happens to be the ILADS treatment protocol):
www.ilads.org/lyme/B_guidelines_12_17_08.pdf

There are also herbal protocols that you could use if you felt more inclined to use them. Here is a list of questions and answers from Buhner's site, which is one of the more favored herbal protocols:
buhnerhealinglyme.com/?s=pregnant

The learning curve is extremely steep with Lyme, but we are here to help you find the answers you need, and to vent and find support. You're definitely not alone in this!!

HUGS HUGS and more HUGS!!!!!!!!!

My son is all neuro, and I know it is SO hard....

I have four children, lost 2 babies at 20 weeks into pregnancy, was totally heartbroken and so alone and devastated. I understand that part of how you feel. I don't have lyme or coinf., but have been through much for more than 2 years with my one son. My other three have also had bites and been treated, now I worry, just never know if it may surface.

Sounds like you need to get home ASAP and try to start some recommended things by the very bright and experienced people on our site here. They have pulled me through SO MUCH and brightened my darkest times when I had the same thought you are having, so lost, sacred, desperate and not wanting to have to keep going.

Time and herbs, abx, detoxing... all heals, all brings peace. Keep going and be on here as much as you need.

My personal email is enabled and you can always send me a note that way as well.

HUGS and prayers! eileen

My heart just breaks for you. I have no idea what I would do. I just wanted you to know I care and you are in my prayers.

Finisului17 reminds me of the airplane. Mothers put on their oxygen masks first so they can safely put one on the child.

Hearts and prayers go out to you. I too worry about transmission to my little girl now 2.5. Not showing symptoms knock on wood. And i have not yet told my ex of my new diagnosis . It is an std...one person got it from a tear. Your hubby may want to get tested igenix or treat empirically with you. I do recommend what obgyn above said go with amox and pulse zithro and pray. How long have you been ill? Some times its a trauma (loss) that lets immune guard down and triggers it like a fury. ..i know your pain too... you have a hard choice to make . seek the silence and you will know what to do

Hi Raincity,

I understand your fears and stress. I am going through the same thing myself(I found out Christmas Eve) I'm somewhere between 5-9 weeks pregnant - probably closer to 9 as I believe I had some minor implantation bleeding last month. So far our plan is to go through with everything. I have researched non stop the past few days and have found that people have had a lot of success being on two antibiotics that are safe for pregnancy and of course natural therapies that are also safe. A lot of woman feel better when pregnant and crash after birth or breast feeding (though I think not breast feeding is probably the best choice in this situation) would love to stay in touch!

Best wishes!

Right, Breast feeding is not recommended, although I would sure check into finding out if you were to still be on the abx if that would make it safer.

Be prepared to crash after the birth (I sure did!), have help lined up with the daily things that you will need to do with a new baby in the house. If you can have someone stay with you for a few months, that would likely be the best thing.

Traveler,
I have read some doctors say to breastfeed on ABX and whatever other therapies that are safe for baby and other doctors say to just skip it and give them the next best thing. I can imagine the crash! I plan to plan that all out the best I can. Luckily my partners parents are a stay at home mom and his dad does not work right now either. We live in my parents basement suite and will probably plan to stay for at least a year, but we will see!

Charissa I wish you nothing but the best! My LLMD has had success treating patients with antibiotics throughout the pregnancy where the patients had healthy babies that tested negative - she recommended 3 different ones to take the entire length - Amox, Azithromycin, & Omnicef.

After much thinking, my husband and I have decided to use a surrogate based on my specific current health situation although that means I have to go through IVF and I'm nervous about how some of the hormones ( like Lupron) will impact me. I'm wondering if Roscoe or anyone else may have thoughts to share on their IVF experience while having Lyme and or co-infections. I am so nervous so truly would appreciate any thoughts!