Scared: Your thoughts on relapse and re-treatment?

I had late disseminated Lyme living in Maryland in 2010-2011 plus Bart and maybe Babesia. Went undiagnosed for 6 months.

Symptoms then: fevers, severe brain fog, cognitive impairment, exhaustion, rage, depression.

Successfully treated by LLMD w Burrascano protocol for 13 months. Doxy, Augmentin, Levaquin, etc. plus supplements.

Remission lasted until May of this year when I had major life stressors resulting in scary new symptoms like PVCs/tachycardia, exhaustion, unable to cope with stress.

Suddenly over the past 2 months I have all these neuro symptoms: body-wide twitches, calf burning, muscle pain and shaking from minimal exertion, insomnia, fatigue. Had pvcs/tachycardia but less now. Heart workup was normal.

Depression and anxiety too but I can’t tell if those are from Lyme and Co. or my reaction to these scary symptoms that have me out of work.

Treating with LLND since July 1: 100mg doxy 2x/day and 500mg Alinia 2x/day plus herbal antimicrobials (Morinda, Lapacho, Uncaria, Houttuynia, Takuna). 500-600 Mag Malate/Citrate for twitches hasn’t helped.

LLND is smart but I’m worried this isn’t aggressive enough since my symptoms are not better and sometimes worse. He is ILADS but doesn’t follow Burrascano.

My questions:

Anyone else have a relapse after this long a remission?? I thought I had beat this thing! Could it be something else other than Lyme? I’m freaked out over ALS.

Can/should I ask for more/different abx? I know some say take it slow but I also see a lot of folks on either higher doses or different abx than I’m on.

Thank you in advance. These forums were extraordinarily helpful to me 9 years ago when I got hit out of the blue.

Positive PCR for Lyme plus Bart H and Bart B.

Post Edited (AZLymie) : 9/25/2019 10:10:21 PM (GMT-6)

mpost said...
yes i relapsed after 1.5 years of remission. it's ok. you just need the antibiotics again. maybe not as long treatment as first time.

levaquin for 13 months ?! dude, careful with those tendons ... i used levaquin, but not this long, just a couple of months, then rotated to cipro and then someth else....
.

Not just tendons. There are 3 or is it 4 fda black box warnings for Cipro and Levaquin

“The FDA first added a Boxed Warning to fluoroquinolones in July 2008 for the increased risk of tendinitis and tendon rupture. In February 2011, the risk of worsening symptoms for those with myasthenia gravis was added to the Boxed Warning. In August 2013, the agency required updates to the labels to describe the potential for irreversible peripheral neuropathy (serious nerve damage).”



“WARNING: SERIOUS ADVERSE REACTIONS INCLUDING TENDINITIS, TENDON RUPTURE, PERIPHERAL NEUROPATHY, CENTRAL NERVOUS SYSTEM EFFECTS AND EXACERBATION OF MYASTHENIA GRAVIS”

https://floxiehope.com/2016/08/19/updated-black-box-warnings-for-fluoroquinolones/

mpost said...


you are chronic. you are not going to get cured at this phase. u just play for a draw, not for a win. it's ok. they will find something to fix us , but it may take some years. in the mean time, this is what we do ... take pills, reach somewhat remission .... stay there as long as u can, relapse, take pills ..... etc etc
.

Are you saying everyone relapses?

I know several people (in real life) who have stayed in remission for many years.
One in particular has been in remission for over 10 years now, and another for 6 years now.
Several others are well for 3/4 years.

What about Mandy from Under our Skin? She’s still in remission - that’s gotta be 7/8 years now ?

And Christa (Justin and Christa ) has been in remission for several years too. I’d guess it’s been about 7/8 years for her?

A previous Mod - Opugirl was in remission prior to me joining this forum in 2014. so at least 5 years

Dejavu has been posting quite a bit lately - she’s been in remission for many years - can’t remember - is it 14 years?

First off there is no permanent cure for Lyme and Co's… only a chance for remission either with or without maintenance Rx and/or herbals. Any high stress life event (car accident, illness, divorce, surgery, etc) that effects the immune system can trigger a relapse.

You did good to put your Lyme into remission in only 13 months the first time. Your current dose of Doxy is too low. Your need 400 mg per day. I would go back to what worked for you the first time. Obviously your body handled the Levaquin well... just double up on magnesium and at any signs of tendon stiffness or neuropathy stop Levaquin immediately. I had Achilles Tendon damage after only 19 days on Levaquin, but later took Cipro long term with no ill effects. Bart is tough to beat you can do it again.

Girlie said...

mpost said...

Are you saying everyone relapses?

well search for syphylis literature. if you have neuro syphilis and stay like that for years , there is no cure. syphylis is a spirochete, a cousin of lyme, but it is MUCH more researched and known for 100+ years.

so yes u can take ceftriaxone and will kill most treponeme. but years / decades later, you can still relapse...

im glad to learn there are so many people in remission.... hope i can get there sometime....

I was functional and probably considered in remission for a couple years, if not a few. Think I got reinfected last year so back to square one. Relapse is always lurking around the corner.