Somewhat new to Lyme, in treatment but need help

Hi all,

I'll try to keep this short but I can be wordy!

Likely bit in July '15 in NC, purple/bluish circular rash appeared 2 weeks later, 2 weeks after that I woke up with extremely sore muscles everywhere and got weak to where I couldn't hold my kids or dress myself. NP and ER brushed my inquiries about Lyme off but my primary started me on Amox (I am breastfeeding) for 28 days and saw an ID doc. Herx'd right away (didn't know it at the time but looking back) and then felt better slowly. Muscle pain went away completely but joint pain came and stayed. ID doc said give it time, I did and it stayed. I did research and found an LLMD that I've been seeing. He said since I caught it early it should be a quicker road to recovery.

Started a sugar/dairy/gluten free diet and am on 4 abx (pulsed), diflucan (pulsed), and a bazillion supplements. Western blot came back negative (some + and some IND) so my LLMD is still certain it's Lyme with my history. I got this small rash on my wrist that flares and then goes down but never away (yeast??). I had no change after my first cycle of abx/supplements so at my last visit he changed 2 abx and also added a few things for my thyroid and adrenals (turns out those are out of whack too, which never were before this). I've gone through one cycle of the new meds and I feel no different. I was expecting something since I reacted so quickly to the Amox the first time. I just learned about dry brushing and epsom salt baths so am starting that.

The thing is I don't feel that terrible (especially compared to how I did) but definitely not my normal self. I have 2 young kids and am still in pain to pick them up, etc. My joints hurt and have some fatigue (but am also a young mother so hard to tease that out). I'm just confused if I have a candida problem - based on my rash I think maybe but I don't feel like it otherwise. I am on a ton of pre and probiotics too.

I'm sorry this is so all over the place. I also have word finding difficulty at times. Should I be expecting a herx? How long until I start to feel something? I am putting all these things into my body, I have to believe they're doing something but I don't feel like they are. I am also breastfeeding so have to take that into consideration with supplements, meds, etc. I hate taking so much especially when I'm breastfeeding but just tell myself it's something I need to do for now.

Any help is appreciated if you can tease out my questions from here!

Thank you!

Hi,

Thank you for the response!

I did read through that but went back and looked and realized there's another page so I'll look through that now.

Since I herx'd the first time on abx would you expect to herx again or not necessarily? I just want some indication I'm on the right track with treatment and I just don't know. Especially because I'm traveling 3hrs each way to see this doctor. I feel like the antibiotics I'm on are aggressive but am surprised I don't feel anything different on them. Is there any info or anyone with experience to share on pulsed antibiotics? I know why they are pulsed, just looking for experience with it.

Thanks!

my wife all of a sudden had thyroid and adrenal problems after contracting lyme so there's some connection here. i don't know if you need to deal with the lyme to get the adrenals/thyroid functioning better or vice versa.

everyone's situation is different. not everyone herxes. not everyone responds the same to the same antibiotics. this is why with these complex diseases its important to work with a lyme literate doctor. the bottom line is how you feel and how long you want to give a protocol time to work to feel better. some doctors will switch protocols in a few weeks if no improvements. others will wait several months.

i've been treating for almost 2 years so if you think you're situation is muddy it can get a lot muddier!

Hi Blue Eyed Girl!
Welcome to our community! I'm so glad you found us.

You've been given some great advice so far, so I'm not sure there's much else I can add at this point. Maybe with a few more details we could be of a little more help? LOL! What a thing to ask of someone with word finding issues, right? Sorry.

As has been said, not everyone herxes, and particularly, not every time a protocol gets changed. Sometimes it's because you won't herx, or because it's not the right combination for you. As has been said, it's a lot of trial and error - and having been the mother of two small children while being sick, I know what you are dealing with. It's incredibly difficult at best.

Keep asking questions and keep doing all you can to help yourself. We are here to help as much as we can.

There is a slight chance you could be passing it on in your breast milk. That has happened.

What about your husband? There are several accounts of it being passed sexually.

Going into remission for someone that wasn't treated adequately and immediately after first exposed means it is under control by your immune system. It doesn't necessarily mean it is no longer in your body.

However, a person can consider themselves in remission if they have not had any symptoms for a full 2 months. Generally it's recommended that a person stay on treatment for 2 months past their last symptom cessation, just to make sure.

That being said, it is not unheard of for relapses to occur down the time road after emotional or physical trauma.

Do as much research into personal stories as you can find, and discuss it with your husbank/partner.

You will not get much of a scientific picture at this point if you only look to medical community. For the most part they aren't sending out warnings yet. What we know is purely anecdotal from other's in the Lyme community.


You are one of the lucky ones that got some treatment fairly quickly. The question remains if you were treated adequately in the beginning, or are now. Borrelia itself moves slowly, and I think replicates slower that the co-infections if you caught any of those, so if you're just dealing with the Lyme, it's a lucky break.

However, mono treatment is rarely successful, and 90 days is minimum for your first abx round.

Post Edited (julymorning) : 1/4/2017 4:01:15 PM (GMT-7)

Detox is very important, you can also add lemon water and ACV to your detox routine.

Thanks Traveler, that's good information. I'm definitely planning on waiting until remission, I just hope it's not too late before that happens..

Oh yes, thanks for the reminder bluberrymuffin, I just started with the ACV and have been doing lemon water though not consistently so need to be better about that.

Is detoxing something my LLMD should have discussed with me? He didn't say anything about it and it seems to be quite important!

It's good to have different areas of support, covering all bases!

He did check hormones, metals, etc and will re-check liver and kidney function in a couple months (they were checked by my primary and he got the records). My hormone levels were off and I'm taking supplements for those. Is there a normal time-frame where those stabilize from the supplements? I'm sure it's different for everyone, I just didn't know if there was a certain time that the supplements need to build up (if that makes sense). Sorry I have so may questions!