Can you tell when your Lyme is replicating based on symptoms. I have unfortunately had to stop ABX and unsure when I can get back on them. I was feeling I finally down the home stretch and back to my normal life. Anyways I have been off ABX for 9-10 weeks now. The major symptom I have always had is burning, stiff knees. Before I stopped ABX that was almost completely gone. As soon as I stopped ABX a few days later the knee pain came back for a few days and no pain medication will touch it.
It started on a Thursday/Friday and went through the weekend.
I noticed the same exact symptoms exactly 6 weeks later...I can't remember at 3 weeks.
I predicted that this weekend...week 9...the knee pain would come back with a vengence...sure enough it started yesterday and now here I am laid up in bed with the heating pad.
Now that I think back to the day I knew something was wrong over 1.5 years ago was a Friday. And every time I had a ramp up in knee discomfort during my whole course of treatment the last 1.5 years always started on a Friday and continued through the weekend. If I would have kept a calendar I bet it was exactly every 3 weeks.
So that brings up some thoughts:
1) Can a doctor just treat with ABX on every 3rd weekend and give my body a rest in between? I am praying I do not have more liver issues once everything gets back to normal and this might be a way to keep liver less stressed yet kill the bacteria. I cannot continue to live like this.
2) I think my case would help disprove to the naysayers and CDC that Lyme is killed with a 4 week dose of ABX and chronic lyme symptoms aren't from live bacteria after stopping ABX. If that was the case I should not have very significant flare ups like clockwork that coincide with stated Lyme replication rates especially after stopping ABX after 14 months and I had continually improving improvement the whole time.
Posted by GretaM (Member # 40917) on :
Hi
Sorry to hear your knee pain is real bad! It makes darn near any task a painful one.
Just wondering, because the pain started so quickly after stopping abx, have you treated bartonella? It tends to be a bilateral joint pain kinda bug, and rebounds really quick.
The rotter. I loathe bart. Every time I take my abx and herbs for bart, I imagine punching it in the face. Or I say something along the lines of "Take this you son of a ...."
haha.
Yes, I flare monthly like clockwork, starting about three days before my period and then about another four days.
Doesn't help you if you are male...
A few gals in my support group go on IV abx during their period only. The rest of the month they are abx free and feel good.
I hope this info helps you, and I hope what I say to bartonella made you chuckle a bit.
Posted by MTMT (Member # 40756) on :
My doc never seemed to think I had Bart. I did take two months work of ABX for Bart right before I had to stop ABX. Didn't seem to notice any Herx and my doc doesn't think I have it. My doc has never seemed to associate Bart with joint pain.
The knee pain is always bi-lateral and always has been since the start. It was soo bad the first few months I could barely walk and it was almost constant. For the first year after diagnosis the knee discomfort was constant with big improvements on ABX changeups until one changeup really started putting me in the pain free category. The knee discomfort was responding to the Lyme treatment, particularly the cyst busters.
Posted by MTMT (Member # 40756) on :
Geez, another website makes me think Bart is more correct.
Bilateral joint pain and stiffness. Shin bone pain...maybe ever so slightly with these flare ups. I have quite a bit of muscle twitching..particularly in my legs. Strange chest pains.
Would Bart respond to Lyme treatment that my joint paint was being successfully being reduced particularly with the cyst busters?
I don't have any other joints on my body that ever hurt. It has always been the knees and bilateral every time I have a flare up. It was also 24/7 chronic for the longest time. Which even makes it more not seem like Lyme from all that I read but my doc has not ever said to me that my knee issues are not consistent with Lyme.
Posted by GretaM (Member # 40917) on :
Depends on the abx you were on.
Personally, tinidazole always makes me feel better.
My doc prescribes it in multiple abx protocols for lyme, babesia, bartonella, protozoas.
If the abx you were on for lyme is bacteriostatic against bartonella, then this could explain why you felt better on the abx, but worse off it.
Only suggestions here.
Rifampin is bacteriocidal against bart. It must be in combo with two other abx though.
Are you still seeing your doc, or are you self treating?
Byron White herbals has a test kit. Basically one of each formula.
You try a formula a certain way, and then if you herx, you know that formula is effective against something you have. (or allergic to one of the herbs in the formulations.)
Otherwise, you could try muscle testing. I know it is a bit like black magic but lots of folks find it works to identify what is good for their body, and what isn't.
Hopefully others will chime in soon. I'm fading.
Posted by Lymetoo (Member # 743) on :
"Can you tell when your Lyme is replicating?"
Yes, it's called a herx ... Jarish-Herxheimer response. It generally occurs every 3-5 wks or perhaps approximately 4 days after beginning any new meds.
Posted by Razzle (Member # 30398) on :
If one is not on meds or herbs, yes, it is common to experience symptom flares every 3-5 weeks.
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