Advice on switching LLMDs?

Hi All,

I'd like some advice on how you switch LLMDs...? I am a little bit of a complicated early (?) case.

My current LLMD and I don't agree with my treatment plan. They are expecting me to stop all my treatment in two weeks despite me still having some lingering symptoms. I would really like to still be on treatment until symptom free for at least 1 month, but my LLMD will not budge. They want a follow up with me in Jan.

I am currently vetting other LLMDs and trying to find one that I feel comfortable with and has availability but it's definitely been difficult.

I haven't scheduled my follow up and I'm wondering what do I say if the office calls me to schedule a follow up...? Do I just not answer? Do I say I don't need one anymore because I'm OK?
I'm worried about burning bridges since I hear my current LLMD is one of the few who offer IV.

Sorry if this is an odd question, I just...am feeling so lost and alone in this situation.
Any guidance or words of support are appreciated.

Girlie said...


Hi tryingmybest
Welcome to the forum.
You are wise to treat longer.
How long did you have symptoms before you started treating?

Hi Girlie,
I started doxy 27 days after suspected bites.
I was given oral steroids for how itchy my rashes were and that's how I ended up getting joint paint + muscle pain for about 4 days before I was able to start my doxy.
When on doxy I most likely had a herx reaction. First 3 days on doxy my joint pain went away but then I started having headaches, more joint paint, lightheadedness, neck pain for about 2-3 weeks on doxy. It was only around the 6th week of doxy where I only had some mild joint pain left.

I later did an at home Igenex test and I tested positive for TBRF.
My LLMD then was more willing to treat me with other antibiotics for about a week. The last antibiotic they had me on was really strong and afterwards I had a return of a lot of fatigue, headaches and joint pain that had previously gone away. My LLMD originally seemed on board to keep me on doxy for two months no symptoms, but now has backtracked and says they want me off all treatment and that they do not know if they can trust the positive TBRF. They have not offered to do an Igenex immunoblot on me.

It's been about a week since then and most of the fatigue and headaches have resolved but I still have a some mild joint pain. I've been on doxy for almost 2 months now.

Garzie said...
27 days after initial bite is not too long in terms of the disease becoming chronic - so that's good

but the oral steroids may have helped lyme and co become more established than they might have otherwise (cortico steroids are immunosuppressive - which is likely why they were given for the skin condition)
however - studies have shown oral steroid use is associated with worse outcomes from lyme - and so are normally contra indicated in lyme patients.

as a result, if you still have symptoms i would also favour treating longer - if it were me

if you feel your current LLMD is not working in your best interest - or partnering with you in a way you are comfortable with - then it's time to find one who will.

all the best !

Thanks for the input Garzie! Currently in the process of trying to find a new LLMD that I feel comfortable with.
I'm glad that there are lyme forums like this that still exist with a wealth of knowledge to sift through.

trkane said...
Did your LLMD prescribe the steroids or did another doctor?

It was my GP who prescribed the steroids
I live in a state where lyme isn't considered "possible", so they didn't think it was lyme since my rashes were non-bullseye rashes.

I had to convince a derm to give me 10 days doxy and then saw another derm who gave me 30 days doxy. I ended up seeing my current LLMD because the herxing was making me really worried.