Update and needing thoughts/advice on Lyme, RMSF, and symptoms

Hi all,

I wanted to post an update and also see what you all think or if anyone has advice. I am coming to the realization that this stuff isn't going away and that I will need to treat somehow. I just don't know how I'll treat yet.

In case you don't remember me, I am breastfeeding my 3 year old son who is not at all ready to wean. My son has thankfully tested negative for what I have tested positive for and he has been nursing the whole time before I even knew what I had: Lyme and RMSF. He doesn't have symptoms thank God but of course I worry anyway despite my and his doctors telling me it doesn't pass through breastmilk and so far hasn't shown to for him.

I also tested positive for past infections of the following but all were igm current negative: EBV, roseolla, & toxoplasmosis.

Here are my questions - sorry it's long:

Needing opinions/thoughts. The past three days I've been more and more symptomatic. (I have noticed my symptoms have a trend of getting worse leading up to and during my period.)

Last night was horrible with sleep disruptions - I woke up gagging at one point (like what happens before you throw up) and then felt sick to my stomach but it passed and I didn't throw up. I then kept having horrible freaky nightmares and being between awake and asleep. When awake it was as if my brain was out of control and just throwing all these random memories complete with sound at me. Then I'd fall back into nightmares.

Then this morning when I woke up my right hand finger joints are swollen like they were before I started antibiotics (I am currently off amoxicillin of my own choosing which is what I had been taking since I'm still nursing my son). And I was super irritable this morning which is very unlike me. I also felt unnaturally anxious which hasn't happened in a long time and have had an unnatural-feeling depression some days that's unrelated to any thoughts/feelings that comes and goes and can feel almost unbearable at times.

The past three days my right finger joints, right knee, and right top of my ankle extending down to my big toe have all been clicking, cracking, painful and my foot has had full feeling but has felt like it's hard to pick up almost like a dropped foot but not quite. My right arm has felt weak on and off. Does this all sound like Lyme? I tested positive for Lyme and RMSF, but nothing else - I know the tests aren't accurate, so that's why I wonder if this is just Lyme or what?

My Lyme history: bitten twice last June and once more in July. Fevers began by June 30 2016. Symptoms had been going on much longer than when the fevers started. Started ceftin in August, stopped after 6.5 days due to having an arrhythmia and huge PVCs. Took a 1.5 day break, started doxycycline, took for 13 days. Switched to amoxicillin due to continuing to nurse my son. Took it until December 13 2016 - total time on antibiotics was almost five months.

My gut and liver needed a break (I have intrahepatic cholestasis which started early in my pregnancy with my son and never resolved and my condition has been worse while taking antibiotics). My symptoms got much worse at first when I stopped amoxicillin but then slightly better, but it all rotates and waxes and wanes.

Sometimes rotating symptoms are unbearable. Sometimes I'm just tolerating it. And sometimes I feel almost normal which I haven't felt in years (basically since giving birth to my son) despite having pains that are always present. Thoughts please?

Does it sound like Lyme or could I have not fully treated the RMSF? Does it sound like other coinfections? If so, which one(s)? I do not think my body can take more antibiotics and my son getting amoxicillin in my milk also started having gut issues and is already so much better now that I've stopped the amoxicillin.

Please help, thank you so much, I'm so scared. My right hand finger joints were visibly swollen this morning and now my left finger joints are starting to hurt. I also should add that my fingers had stopped hurting and swelling on amoxicillin as well as many other symptoms I've had for years however many symptoms never did stop such as: right knee issues on and off which was a new symptom this summer, lower back pain - new symptom this summer, bizarre sleep disturbances at least a few times each month before or during my period, getting super hot in the early morning when my son wakes up and nurses back to sleep around 4 am almost like a hot flash but no sweating - new symptom that started this summer. If you have any thoughts or advice I would so greatly appreciate it.

Also, has anyone else ever had that bizarre waking up feeling nauseous and gagging symptom or heard of anyone who has? I have a lot of symptoms linked to GI tract and I feel it's related. I feel like there is something living in my GI tract causing so many of my symptoms!!

Thank you so much!

Post Edited By Moderator (Traveler) : 2/4/2017 1:36:47 PM (GMT-7)

HMommy - I was going to say the same as Traveler - you need to treat if you want to get better.

In order to treat...you need to wean your son.


(Traveler said it more eloquently, but I wanted to concur)

I hate to say it, but because Amox alone isn't enough to treat these infections by itself (needs to be combined with another abx that will keep it in the bloodstream longer), your situation is likely worse than when you first started treating.

As far as other infections, that's something that no one can say for sure, but you *may* have Bartonella as well because of the more severe issues with neuro symptoms. And, you may have Babesia due to the "hot flashes" you are experiencing.

The only way to really know is to start treatment for Lyme, as you know you have that, and watch your symptoms. We often discover that as we treat one infection, the symptoms of other infections that we have come out more strongly.

Are you seeing a LLMD?

Hi, HMommy,
I know how you feel about continuing Breastfeeding and that you believe your child is not ready to give it up yet. I also went through that with my son about 26 years ago, He was 15 months old and I was sick. Only I didn't have Lyme ,But a severe pain illness and I was tired.

I know the bond that breastfeeding can create and how it does take time to wean/transition a child from it. I just want you to know that it will all work out. My son was fine when I weaned him, I was the one who was more emotional about it since he was my first child. You can think of it as another stage in his childhood.


I realized then, that for me to be able to provide the best, most loving care for my child I had to get as Healthy and as strong as possible again. For me, that was the best thing I could do for my child.

What I want to say is: you sound like everything is getting worse and I'm so, so sorry for that. When I read your first post/entry, I'm concerned for you, due to all the symptoms you are experiencing. I'm not trying to tell you what to do, but rather let you know others have been in similar situations and understand how you are feeling. Try to stay hopeful and I'm praying for you to feel better. Sincerely, Jo

I hope you are on amox while breast feeding ..it is transmissable ..even if his trst is negative he may have the spirochete infection ...

yes i got and have the ricketts old person cracking that was 1 year befor severe nerve damage ...

consider bvt rife and herbal adjucts ...i pray your son does not get it

I am so sorry you are going through all of this. I was bit by a tick in August and tested positive for multiple infections, including RMSP. And I was acutely ILL from it, in the hospital with fevers, meningitis, paralysis of legs. Doxycycline was my saving grace!

I had been on doxy for two months and most of the initial acute symptoms gone. However, when I did live blood microscopy at the two month mark, they could still see RMSF in my blood alive and well.

So then I doubled up on doxy (200mg twice a day) along with a bunch of other meds and I am almost 4 months post acute illness. Things are a lot better, but continue to have ups and downs.

My gut tells me that RMSF can be very difficult to get rid of-- just like Lyme and friends. And I know how important nursing a child is. Been there, done that with all three of my kids. But--- I also know how vital it is to get well and be healthy for yourself and your family. You need some heavy duty meds on board so you can kick these infections once and for all. I fear that the longer they are also to reside in you happily and comfortably, the harder it will become for you to fully eradicate them and get well.

I know it is probably very difficult to hear this because it doesn't sound like you or your little one are ready to be done nursing. Good luck to you. And I am happy to chat more about RMSF. What a HUGE nightmare that one is!