It's been about
6 months since I last posted. You all helped me so much, so I wanted to come back & share some hope: I'M BETTER!!!!! I just had a healthy baby girl 3 months ago & lyme seems to be in my past.
WOO-HOOOOO!!! But, it was a looooong rough road the last year. Too much sad negative stuff to share at the time, I couldn't handle reading others' trials as well. This is a LONG update.
<<Warning: my stressful stuff could trigger others, please skip to the bottom paragraph with the **asterisks if you're sensitive to triggers.>>
This time last year I stopped my 4+ months of antibiotic treatment. I was really exhausted ALL the time & my LLMD believed I'd completely wiped out my immune system. He suggested that I recuperate & rebuild my immune system. He suspected I would feel completely better & not need any more treatment--I was doubtful. Anyway, I did feel lots better getting off the meds. It was good timing because my mom was getting much worse in her cancer battle & I needed to go home to Hawai'i to help with her hospice care. I didn't want to be wiped out on her couch everyday when I was supposed to be helping & bringing positive energy & believing she could still beat it.
I also felt well enough to apply for jobs. I got a great one as a school principal, to start 6 months later with a stipend paid in the meantime for part-time work--Wonderful!!! (I was starting to drown under my living expenses & medical bills so this was coming at the perfect moment!) But then, when I said I had to go home to assist my family for an unknown amount of time, the job offer was rescinded. That was a serious blow! However, I felt relieved to be able to just focus on my mom on Maui. I'd also been secretly worried that I wouldn't be 100% better within 6 months & that kind of stressful working-overtime kind of job might bring on a relapse...
I was with all my siblings helping our mom. Those that live there permanently really needed a break & appreciated my help. For a little while, off the abx, I definitely felt better than I had in ages. After almost a month, my mom passed away last March. It was incredibly sad--she was still young & lively until the cancer came out of nowhere. We had a huge Celebration of Life for her in the community. That helped bring some closure. I feared a health relapse from the emotional rollercoaster but it didn't come, thank goodness.
Literally the day after my mom passed away my apartment management back in New York issued an eviction notice because I had fallen behind on my rent. I barely had any income & had been out of state for awhile. When my teenager informed me the eviction had arrived I had to fly back to New York immediately to resolve the situation in court. I had to tell my partner about
my financial woes that were escalating and ask him to move in to help pay all my bills. I even had to ask for charitable help from a housing agency to pay the ridiculously high rent. As someone who always made great money, even as a single parent, this all was very humbling & embarrassing for me. It was also incredibly stressful--not only was I having health & financial woes & had just lost my mom, but my brilliant teenager was still in high school & failing her senior year. It was clear that my little genius was internalizing all of my life stress. Instead of talking about
it she was skipping school, not turning in work, not applying to college. I went to counseling/therapy with her but she wouldn't
open up. She failed the school year. I was devastated. I cried in bed for 2 days. I felt just sick sick sick.
Around this same time I also found out I was pregnant. It was a SHOCK!!!! I'd been hoping it was possible & discussing the future with my Significant Other, but I never thought it would happen so fast! I'd had 15+ years of strange cycles but all immediately went to normal as soon as I'd started treating the lyme with abx. I was also doing acupuncture & trying other eastern medicine. Apparently, the moment I got off the antibiotics is when I conceived. Very lucky timing!
I searched on this forum for Lyme & Pregnancy info, but there was almost nothing--not ANYWHERE on the Internet. :-( Another member had just returned to this forum to say she'd healed: she'd just had a healthy babe & was on safe antibiotics during her pregnancy, prescribed by her LLMD, & her insurance paid for everything!! I contacted her directly & she was amazingly helpful. However, her doctor was in California & I was living back in New York. His receptionist wouldn't let me even speak to him or relay messages. She said that they don't do phone consults & he wouldn't see any out-of-state patients even if they flew in to see him. Roadblock #1.
My NYC LLMD congratulated me profusely & said he has often seen his female patients get better with antibiotics & go on to have healthy pregnancies. He reiterated what the scant research shows: most lyme patients feel AMAZING during pregnancy but need live-in help for at least the 1st month after birth because their lyme issues come back worse than ever. He also said I must see a Maternal & Fetal Medicine Specialist to be extra safe. I found only ONE who would accept my crappy state insurance. Her receptionist assured me they'd worked with pregnant moms with Lyme before. When I met with the DR I liked her no-nonsense attitude about
pregnancy as a normal process of life, no interventions required. But by the second month of seeing this OB for prenatals she was pooh-poohing away my worries about
lyme, saying, "Lyme is a nuisance disease, but not serious". She refused to prescribe me any antibiotics during pregnancy. Roadbloack #2. I was worried sick about
my baby being born with lyme.
My LLMD said he'd speak to her over the phone to explain that mine wasn't an acute but a long-standing lyme infection. He would prescribe me antibiotics if she would approve. My OB refused to even speak to my LLMD. She said since I wasn't having arthritis I wasn't having lyme symptoms, that all her other lyme patients always had arthritis. <Insert me feeling crazy p****d off here!> I started going to a holistic health center in Manhattan that is recommended by many members here on the forum. Roadblock #3: The MD there was wonderful but said she couldn't override my OB/Maternal-Fetal Medicine specialist either; instead she gave me the names of the only 2 Lyme Literate Obstetricians listed with ILADS. Both women are on the East Coast but outside of New York. Neither office receptionists would let me speak to or leave messages with either of these LL OBs, and they insisted they don't see out-of-state patients or do phone consults. Roadblock #4. I was beyond frustrated, stressed, worried about
my baby's health. I'd read that lyme moms often miscarry through the 5th month so I didn't dare tell family or friends our exciting news until we entered the 6th month.
The pregnancy was somewhat normal for me (I hate being pregnant, feel sick & exhausted the whole time): I was sick until the 7th month. I was exhausted until the beginning of the 9th month. When pregnant with my teenager I couldn't gain weight--I gained only 11 pounds but still had an 8-pound baby (I now believe that was because of the lyme). This time I gained the normal amount so I took it as a sign that I am healthier now than I was way back then in my youthful prime. But this pregnancy I was almost fainting every morning, & was fainting on the street in the middle of the day. And I could tell it was always right after I'd taken an elevator or escalator. I was terrified that the lyme was back, because my first really scary lyme symptoms of blacking out & extremely heavy immoveable legs kicked in first in 2014 when I took elevators. So this scary stuff in pregnancy led to tests of my heart and brain at the cardiologist & neurologist. Eventually all studies came back as "normal", with just "tiny abnormalities" on all tests. They said it was normal for pregnancy.
Still, I was furious that I hadn't been able to get any lyme antibiotics prescribed to me and felt sure that the lyme was wreaking its havoc, despite the normal test results. I wanted to switch doctors but couldn't find another Maternal Fetal specialist who would take me. I hoped to switch to a midwife since my mom had been a highly trained & successful midwife, but it was impossible to find anyone--doctor or midwife--who would take me on after the first 5 months. The whole experience was like learning about
the Lyme conspiracy in this country all over again. Incredibly infuriating!
The first breakthrough came when I returned to the holistic health center in Manhattan for Biomagnetic therapy treatments. I don't know how it works, but it worked for me! The real clincher was taking the only thing they felt comfortable prescribing: a simple magnetized liquid multivitamin. I took a dose of this liquid every morning along with my liquid iron (Floradix) and the fainting eventually subsided. I got more energy. I stopped feeling sick all the time. The next breakthrough was that my teenager did graduate high school after attending summer school & suddenly started acting more mature & happy, helpful & excited about
the baby on the way.
And finally, I found a birthing center that would take me on once they reviewed my medical records (I'd already told them about
my history of lyme). My original OB had a fit when she found out I wanted to switch dr's and charged us a lot of money for what the insurance should have paid her but hadn't covered yet--we later found out this was illegal on her part. I sent my medical records to the new birthing center twice, but they lost them over the next couple of weeks & kept requesting them again. More frustration & stress for me.
I was finally able to convince my SO that the baby should be born back home on Maui, where I always feel my healthiest. At the beginning of my 9th month I flew home & sure enough, all remaining yucky pregnancy/lyme symptoms just disappeared. (After I landed on Maui I got yet another call from the NYC birthing center asking for my records a 3rd time so I could have my 1st appointment with them, haha.) On Maui I was able to eat healthy organic tropical foods, walk the beach & swim everyday, do prenatal yoga, & get the best support from my mom's best friends--my midwife 'aunties' in her absence. I had an easy labor & fast delivery. We had already ordered the infant test kit from IGeneX in advance. My new wonderful OB took the cord blood after delivering the baby and a few weeks later we found out our little girl is completely healthy--NO Lyme, hallelujah!
**Things have been pretty good since my daughter's birth. I was terrified that my lyme symptoms would come raging back after birth, as is supposed to happen according to the little information that is out there. We have returned to New York during winter & I also feared that the cold weather would bring back my symptoms. But none of this has happened! All I have is my usual intermittent neuropathy in my fingers and arms. As long as I don't wear electronics (remove my Fitbit bracelet, cell phone) this numb tingling goes away. My feet still hurt on some mornings when I get out of bed, but I'm so used to this after dealing with it for 20 years on & off that I ignore it till it subsides in the morning. I do get occasional random dark thoughts about
running away from it all when my SO & I argue about
something, but I think that is part of the difficulty of adjusting to having a new baby. Overall, I feel better than I have in 4 years probably!!!! Still, I will be on the lookout for any other lyme symptoms trying to creep back in. I'm trying to keep my stress as low as possible, get enough rest, & maintain a healthy immune system so lyme can't fight its way back into my life. I am proclaiming that I AM HEALED!
Thanks for reading, and I hope this gives some hope to those who are wanting to have kids in the future. Also, to those of you who are in the worst financial shape of your life--even that can get better. Just hang in there, try to resolve only one obstacle at a time, and continue to focus on your health first and foremost! Best of luck to everyone on their healing journey, I'll be around to chime in & cheer on as time allows.