I'm in my 7th month of treatment and 5th antibiotic. I feel much, much worse when I'm on abx. My fatigue and pain are debilitating. It's continuous...not herxing in cycles. I'm functioning at 10-20% of normal. My LLMD has nothing to say about my worsening of symptoms (just nods his head and looks concerned).
Is this just the way it is for some people? How will I ever know when I'm better?
Posted by JOLA (Member # 23498) on :
I know just what you're saying. I'm in 7th month os ABX. I can't remember if I felt better before ABX started or if I'm worse. Ithink worse.
Last week stopped abx for a few days to give my stomach a break and I felt better. Not great but no nausea, diahhrea etc.
Hubby has ordered a DCoil rife and hopefully eventually I can use this as my primary healing method. For now back on abx and feeling awful.
Don't know what else to do. Tested positive for lyme/babs/bart/ehrl/hemobart.
Posted by ninjaphire (Member # 18234) on :
Have you tried a cyst buster ? Perhaps GSE or Flagyl.
I was feeling crappy on abx until I started taking GSE.
Posted by street129 (Member # 23472) on :
i know how u feel, my regular dr have me on doxy only,
she found 1 band 41dk, and im feeling terrible,
i have 13 more days to go, is this what it will be like when i see a llmd,
hope all my test come back ok. i hate doxyyyyyyyy
Posted by springshowers (Member # 19863) on :
I used to feel Horrible on EVERY Single abx.. 100 percent of the time. They said it was herxing but it never ended. I never could get up to dose..
I then tried IV abx and now I am able to Herx and then feel better and get through the herx. I know there is something weird about oral abx for me... I am on much higher doses and some same and some different IV abx. The Orals .. always kept me worse....
I am not making a lot of progress. I feel like this is how i was "supposed" to feel during treatment. yeah worse days and herxing that felt horrible .. but making progress through ever one and then a new one comes along..
I spend many years on orals trying to breathrough this disase. Never did.. Til IV abx treatment that came along with integrative approaches.... such as IV EDTA and IV Ozone and UV Blood Treatments and IV Peroxide DMSO and IV Glutithione and IV nutritional support and >> well.. I had tried all the intergrative apporaches while on Oral abx and did not have the breakthrough.> I know it was a combination of things but there is a night and day difference for me between oral and IV abx.... The EDTA has done a ton for me too..
If your stuck in feeling worse for weeks months and years.. Its a flag.. I hit my head up against the wall for way too long.. trying to do the right thing... but I was wrong..
I should have looked at other options much sooner..
Posted by Amanda (Member # 14107) on :
Oh, I knew two women like this, they got worse and felt really bad the entire time on abx. They both tried some heavy detox regiemes.
It really helped one, and did nothing for the other.
But they got 95% better
Posted by sapphire101 (Member # 6638) on :
I was the same way when I first started treatment. I have never herxed in cycles like some do.
You will know when you are getting better. The herxing will let up. I didn't think I would ever feel better but I did.
Honestly, I think a lot of my problem was that I wasn't detoxing nearly enough. I have a sauna that I use now and it has helped tremendously.
I have never not felt some better after using it.
Just hang in there, it's a long tough road.
Sapphire
Posted by Lymetoo (Member # 743) on :
It took at least a year before I felt ANY better on oral abx. Then another year before I turned the corner... the 2 more years to success.
It's HARD, no doubt about it!
I've been off abx for 5 yrs now. You can do it!!
PS.. I had had Lyme a LONG time before being dxd.
Posted by KimDC (Member # 20699) on :
Thanks to all of you for responding.
Sapphire - There's a sauna I can use at the community center I belong to. Is that the kind of sauna you use? How long do you stay in?
Posted by sutherngrl (Member # 16270) on :
I always feel awful on antibiotics. After a year and a half of treatment, I felt like I finally started to have a few good days.
I never had a herx cycle before. It felt like a continual herx. Lately, I do have times where I have good day and bad days, and then suddenly I feel awful for a week, like as bad as I felt to begin with. Those weeks are very discouraging, but possibly this is finally me being able to distinquish a herx reaction.
Anyway, just remember that it took me a year and a half to get to this point. And still I'm not positive about what is going on.
Drinking lots of water helps me more than any thing else. Sound so simple, but I don't do well with epsom salt baths and sauna's. We are all different, so you just have to try different things.
Good luck! Hope you feel better soon!
Posted by SForsgren (Member # 7686) on :
It may mean that you are not focusing enough on detoxification, binders, fibers, drainage remedies, organ support, etc. If you focus on those, you should be able to make the antibiotic therapy more manageable.
Posted by knobs (Member # 21928) on :
quote:Originally posted by sutherngrl: I always feel awful on antibiotics. After a year and a half of treatment, I felt like I finally started to have a few good days.
I never had a herx cycle before. It felt like a continual herx. Lately, I do have times where I have good day and bad days, and then suddenly I feel awful for a week, like as bad as I felt to begin with. Those weeks are very discouraging, but possibly this is finally me being able to distinquish a herx reaction.
Anyway, just remember that it took me a year and a half to get to this point. And still I'm not positive not positive about what is going on.
Drinking lots of water helps me more than any thing else. Sound so simple, but I don't do well with epsom salt baths and sauna's. We are all different, so you just have to try different things.
Sounds like detox helps you a lot and ABX make you worse! More detoxing and less ABX? Just a thought!
Posted by sutherngrl (Member # 16270) on :
Sorry Knobs, don't mean to offend; but just can't take advice from someone that admits they are high on weed.
Also you have no idea my ABX protocol anyway!
KimDC, detox is a good thing; talk to your LLMD about it and get some advice from a proffessional.
Posted by sapphire101 (Member # 6638) on :
Kim, I have a FIR (Far Infared) sauna. I don't know which kind they have there where you go.
I stay in mine 30 minutes. Some days I'm too sick to use it and miss it when I can't. I always feel better afterwards.
I have a tendency to pass out so I have to be careful. Just start out slow to see how you do. I couldn't tolerate it at all for a long time.
Give it a try and see how you do.
Sapphire
Posted by knobs (Member # 21928) on :
sutherngrl - ACTUALLY, when I first joined lymenet you were one of the people who gave me comfort because we were "in the same boat".
I was wrong about my whole situation.
Posted by knobs (Member # 21928) on :
up
Posted by map1131 (Member # 2022) on :
Kim, yes it's normal but read Scott's post on detoxing. There are many things you can do to help so you're not living in toxic h*ll everyday.
Pam
Posted by btmb03 (Member # 18394) on :
Kim, my LLMD is a big proponent of 'alkalizing' one's body to 'dampen' the immune response which of course has gone haywire in our cases.
I too herx 24/7 and though I'm on small doses have to admit that Alka Seltzer Gold which he recommends is actually somewhat helpful.
At 10-20% of normal how in the world would you even get out to go to a sauna??
Posted by sutherngrl (Member # 16270) on :
Knobs, notice that I said back then, you can never, ever, ever give up!
I am glad you feel better! I hope you are right and its not LD. That would be awesome! But honestly I don't think weed is the answer to your problems. Whether they be physical or emotional.
Anyway this conversation doesn't really belong here. This is someone else's thread.
Posted by knobs (Member # 21928) on :
^^^ You are a very low person to tell me I believe weed is the answer to my problems. You are completely ignorant. If you read my entire post you would see I had REAL emotional and physical scars there to heal! There were many, MANY healing agents that have helped me. Don't respond to me that way anymore. It's MEAN and IGNORANT.
Posted by Myco (Member # 9536) on :
I was worse for the first 18 months but it was so worth it no that I am feeling well again.
Posted by sutherngrl (Member # 16270) on :
Sorry Knobs, I guess I misunderstood. I apologize!