I am thinking this is probably different for everyone, but I thought I would see if there is a specific antibiotic that seems to help the "fatigue" aspect of Lyme(or other tick diseases).
Fatigue is a horrible symptom for me...I sleep tons! And I feel like things that a normal person doesn't even realize require energy, like taking a shower, can seem draining to me when I am at my worst.
Also, when I do something like go to a movie with friends (people always say, you will feel better when you get out....), I feel worse afterwards, not better, because I didn't have the energy to burn in the first place.
Anyways, thought I would see if anyone has had relief from this, and if so, which antibiotic or combo of them helped?
This should be interesting to hear. Thanks!
Posted by zil (Member # 12048) on :
I don't have any answers for you but have the same problem. I stay pretty much housebound due to terrible fatigue. Any normal activity makes me worse ----laundry, floors, showering etc. I stay on my couch or bed generating a heartbeat is all I do. Nothing seems to help.
Posted by jamescase20 (Member # 14124) on :
I have your answer as I experienced it.
And discovered something else too.
cefuroxime (the ENTIRE family of these w
Penicillin The entire family of these work)
Causes a massive herx, followed by less fatigue.
lyme uses a efflux pump to resist the tetra family (except tigercycline-it has a built in EPI) AND all marcolides are almost useless unless you plug the efflux pump.
Ceftins and pennys are not able to be purged, thus killing the lyme outright.
Posted by jamescase20 (Member # 14124) on :
And the fact that lyme tried to go cyst form on the pennys are further proof of this killing abilities.
Dont worry about cyst form, kill active lyme first with pennys/cefins.
Worry about cyst form later, when you can get after them.
Posted by Angelica (Member # 15601) on :
I read an article on the canlyme forum that a LLMD in Germany prefers Penicillin for ticks bites over doxy. He feels that Penicillin hits the disease better for early treatment at least.
Posted by Tracy9 (Member # 7521) on :
Adderall or Provigil for fatigue.
Posted by CherylSue (Member # 13077) on :
Jamescase, I have been on ceftin for the past two weeks. Okay when I first started, and now I'm dragging. I'm also nauseous, and I feel worse. When did you first herx on the ceftin? I feel like I'm going backwards, but I keep telling myself it's a herx. I took some charcoal this afternoon. Geez, we're having company this evening for the Fourth. What a day to feel crummy. I'm also trying to kill all those baby lymes swimming and hovering in my blood microscopy. Did Ceftin do that for you?
Thanks for your input.
As always, CherylSue
Posted by lpkayak (Member # 5230) on :
very high dose amox and zith for a year
then pulse amox and biaxin for a year
then detox for a year
fatigue really gone-for over 10 yrs and ball of foot pain and pain in middle of back also gone
lots of other stuff still around-but i am out of bed
Posted by Hoosiers51 (Member # 15759) on :
Thanks for the advice, everyone.
Interesting a lot of people mentioned the Penicillin family. I have been on high dose Amoxicillin for (most of) the last 2 years, and I do feel like I've made some progress. So maybe my LLMD does know what he's doing!
But, still have a lot of progress to make. Wonder if switching to Penicillin or Bicillin would be good?
Haven't heard too much about this Ceftin thing, so that might be another avenue to explore. I have been extensively treated on some meds that did nothing, so I am always looking for a new option.
Also...jamescase 20, you mentioned cyst-busters. I am thinking of starting Plaquenil soon, so even though I have heard it is a weak cyst buster, maybe it will help.
I'm so glad so many people responded. Hopefully we can get some more!
Posted by BugBarb (Member # 210) on :
PRO-VIGIL!!!!!!!!!! If I don't take it when my husband gets ready for work, 5-7am, I will sleep past 1000am. If I take it early am, I will get up and feel like I am actually waking up naturally...like I think normal people wake up. I have been on provigil since before I stopped taking antibiotics, probably taking it 6 or 7 years...I forget. If I am sick it doesn't help. It doesnt't work as a substitute for sleep either. However, if the causes are what I call my "broken brain", it works great. It opens up a part of my brain that doesn't get sun otherwise. I believe lyme permanently damaged the sleep/wake/speech center of my brain. Provigil helps with daytime sleepiness and with improving my flow of speech and gets rid of vivid nightmares.
Posted by pigwit (Member # 9059) on :
cyst busters and pulsing
Posted by Michelle M (Member # 7200) on :
Treatment, first and foremost.
Then, like BugBarb -- Provigil.
But: Take it early.
And: It doesn't always work. If you are very sick, you can still fall asleep on your feet, Provigil or not. But it mostly works. Like a miracle. It's kept me from driving into a tree many a time.
Michele
Posted by InADaze (Member # 7711) on :
My doc did a salivary adrenal test. It found my DHEA and cortisol were pretty low, so he is having me supplement them.
I haven't seen any results yet (started last week), but my poor adrenals being out of whack can certainly explain some of my exhaustion.
Did you have yours checked?
Posted by ldfighter (Member # 9405) on :
For me a lot of the fatigue was babesia, helped dramatically by mepron/zith.
Posted by cactus (Member # 7347) on :
Hi Hoosiers!
Here's another vote for Provigil - it's great when you're desperate. I needed it the whole time I was treating babs.
But for long-term results, Bactrim has been the best for helping my fatigue! I no longer need Provigil, and am waking up normally at long last.
Posted by NanaDubo (Member # 14794) on :
Mepron/zith really got rid of my fatigue. I'm finding now that I'm on bicillin it's even better. Just my experience.
Posted by lymednva (Member # 9098) on :
My LLMD really wanted me to try Provigil, but my insurance only approves it for people with narcolepsy.
So I just have to pace myself and stay within my energy envelope. I rest regularly (usually once a day in PM, but earlier needed more than that.
Posted by charlie (Member # 25) on :
Bactrim
Posted by Windmill (Member # 15404) on :
Hi Hoosier,
what helped my fatigue most wasnt really any one abx but just doing combo's for 20 months until finally i started to feel better! i was exhausted most of the time on treatment until the very end. one thing that really helped then was D-ribose. I guess i must have needed it and i dont know how many people would react the same but it took my energy from about 30% to 60% and after a few months they ve gone up another 10% at least and im working now on a temp basis. I cant say for sure how much was the d-ribose and how much was getting the lyme under control probably a mixture but i can definitely say it was a supplement that helped me alot. everyone s different though. i know how horrible the fatigue is, i really hope you find some relief soon!!
Posted by Jill E. (Member # 9121) on :
Bicillin - I and several other Lyme patients I've compared notes with have found that Bicillin keeps our energy level much higher and more consistent.
Of course, the cost wiped out my bank account!!
Jill
Posted by hcconn22 (Member # 5263) on :
Vitamin D is good for Lyme co-infections and fatigue.
Since many limees never really go outside this further depletes your Vit D. There are few natural sources in food. There are suplements
AND the Sun. Sit in the sun for a couple of weeks for 30 min to an hour and see if it helps. Let the sun be on your skin- the more the better.
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