I was just told I have Lyme disease this past Wednesday (igm and igm western blot positive, igg and igg western blot negative) and began taking Ceftin 500 mg twice a day (supposed to take it for 21 days) prescribed by my primary care doctor.
I have many questions and concerns.
Here is my tick story so you know my timeline.
June 5, 2016: found nymph stage deer tick on my leg and husband fully removed it. Began doing daily tick checks every night on each other after that.
June 15, 2016: found nymph stage deer tick on my back/waist, husband removed it fully.
July 11, 2016: found larva stage deer or lone star tick on my leg. Husband removed it fully.
I still have the second and third ticks in baggies.
June 30, 2016: had a dental cleaning and had a lot of painful inflammation in my gums afterwards (not normal for me). July 2nd finally checked my temperature and it was 100.4 degrees f. Thought I was just having a weird little bacterial infection after the dental cleaning and started to have a sore throat. But fevers continued every day. Then I realized I had a numb spot on my left leg where my foot meets my leg in front. Then started having joint pain and limping, random bouts of diarrhea, weird nerve shock zaps all over especially my wrists and legs, pain in random
locations especially a sharp pain underneath my liver & pain in my legs, exhaustion, bleeding between my periods, forgetting things like our address, & misspeaking words. I finally called my doctor and the nurse said Lyme was possible and they did blood work and called me Wednesday and said it's positive.
Something that makes my case more complicated is that I have a condition called intrahepatic cholestasis which never resolved from pregnancy with my son. So I take ursodiol to control that (600 mg twice a day). My son is still breastfeeding around the clock also and I have so many fears that he might've gotten Lyme from my milk before I knew I had Lyme.
My son has had some odd things popping up with his health directly after I had my first tick on me. I know it's not known whether or not Lyme passes through breast milk but the odd things with his health fit the timeline of when I may have first contracted Lyme exactly. I know it could just be coincidence but he developed what looked like an allergic follicular conjunctivitis right after my first tick. We took him to see a pediatric opthalmologist who said we would likely never figure out the cause but it was probably due to some environmental allergy. He gave us the option of treating with drops or not and we chose not to and it resolved on its own over several weeks. I read that a symptom of Lyme disease can be follicular conjunctivitis that resolves on its own. Then in early July (when I started noticing feeling very sick and getting fevers) he started stuttering very badly. He had never stuttered before and it is now almost every sentence. I read that some children and adults can stutter due to Lyme. I will call his pediatrician tomorrow but I know I had talked about
Lyme once randomly with the pediatrician and he said they don't deal much with it and you're better off finding a specialist. I don't know if it's actually even possible for him to have contracted Lyme from me but he nurses a ton and these things seem so odd and random even though they could be totally coincidental. Do you have any thoughts? Input on if you would get him tested or ask for treatment just in case? Also if you do think treating him would be a good idea, do you recommend I get him seen by a specialist? Also, could he get infected by any other things I may be coinfected with through my milk?
Since starting the Ceftin I have been feeling even more absolutely exhausted during the days and so weak I can barely walk after taking Ceftin every morning. At first I woke up at night with a pounding heart. Now for the past three days after my morning dose I get these really scary skipped heart beats that begin about
30 mins after my dose. It's about
a skipped beat every other beat and they are so strong you can actually see and feel them outside of my chest. They go on for about
two hours and gradually stop. I also feel weak like I can barely walk, and I am having frequent stools, 4-6 per day but not diarrhea yet and I notice the increased skipped beats particularly after that first dose and before/during/after passing back to back stools after that first dose. I have no energy but usually in the evenings my energy comes back a little. I also notice a weird irritability which is not like me and dizziness. I should also mention I have always been dangerously sensitive to medicines of any kind since I was a child and have a family history of reactions to penicillin. I am taking Ceftin because of the family history and because it's safer for breastfeeding. I am still noticing fevers every day so far too despite the antibiotic.
I am just scared that my heart may be having an irregular rhythm and I know I need to kill the Lyme but I don't want to die in the process of killing it.
I also wonder if 21 days is long enough? My primary care said it is & won't prescribe longer but I keep reading that longer duration is recommended. I just have no clue and I tried to make an appmt with a Lyme specialist in PA and they said October is the nearest appointment but I don't want to stop the antibiotic too early if it needs to be longer. And how do I know if I have coinfections? If I've already started antibiotic treatment would anything even show up if I could even get tested?
I am scared of how horrible I'm feeling and not knowing if my son could have Lyme or some other coinfection from my milk.
I don't know how to get in with a specialist soon enough. My primary care won't refer me, I already asked.
I am located in upstate NY, near Binghamton. I am willing to travel to seek care for me and my son if needed. Can anyone give me specialist reccomendations?
Can anyone tell me which stage of Lyme I might be in and what my prognosis might be?
Please help me if you can. Thank you so much.
PS-I have also wondered if Lyme can be sexually transmitted to my husband? What is my prognosis in that area? Can I never carry another child due to the Lyme? Could we never have sex without a condom or is a condom even enough protection for him? Sorry for the TMI question. I just don't know where else to ask.
Post Edited (H Mommy) : 7/24/2016 1:07:42 PM (GMT-6)