posted
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?
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
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..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
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
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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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?
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
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.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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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!
Posts: 124 | From Toronto | Registered: Aug 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
up
Posts: 124 | From Toronto | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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btmb03
Unregistered
posted
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??
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
^^^ 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.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
I was worse for the first 18 months but it was so worth it no that I am feeling well again.
Posts: 770 | From USA | Registered: Jul 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sorry Knobs, I guess I misunderstood. I apologize!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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