posted
I just passed my 3 month mark for treatment, tetracycline and difllucan, and I am ready to quit. Before I started ABX I was at least functional to some degree. Now, I am so much worse, every symptom has been multiplied.
My pain seems to be increasing every day. I literally have tears rolling down my face at times and those aren't the times where I am literally crying for no reason.
My fatigue has me down and out most of the day, things are piling up, haven't done any shopping for Christmas, tree has been up for 10 days, but no decorations on it yet and we host both of our families (about 18 people) for Christmas Day.
I have been getting worse and worse, no let up, no cycling of symptoms and I don't think I can keep it up. I don't know what to do, I don't think my LLMD does anything with co's, which I am pretty sure I have too. We also don't have any money to buy meds/supps on our own either.
Any advice? I'm so tired of all of this, trying to some positive to hold on to today...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
Ugh.. I'm so sorry!!!! This is how treatment goes. You get way worse before you get better.
For sure... back off the meds for a day or two when you can no longer take it.
Take your dr a copy of Dr B's guidelines???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
That kind of pain you are describing is what my son was experiencing this time last year. We decided to pull his picc line and stop treating with abx a week before last Christmas. He had endured 6 months of what can best be described as pure torture.
I know what that is like to not even want to deal with Christmas because you are so sick... that was me last year. Heck, I don't want to deal with Christmas this year because I'm so broke. Christmas brings added stress we just don't need.
At Christmas time last year, we re-evaluated. We treated KPU/HPU, parasites, bartonella, and then mold.
We had to move out of our home because the mold was the biggest problem in our continued healing.
Looking back now at how he never felt better from the abx... he never herxed or had even one good day... I know stopping the abx was the best thing for him.
Sometimes backing off and getting a new perspective is the shortest path to healing.
Btw, my son is 100% better. He has no symptoms whatsoever. He is taking some supplements and chinese herbs for Mold, Lyme and Bartonella... no more pain, no more despair.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
you know your body. don't beat yourself up. wishing & praying you feel better.
maybe in time you'll feel well enough to find a new treatment protocal whether herbs, rife etc.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Sounds like you are having a herxheimer reaction - getting worse before getting better. Talk to your doctor. Lots of times, taking a break from the antibiotics can help you to regain some strength and normalcy for a while. See what the doc says. Good luck and I hope you feel better. Ann - OH
posted
Thank you all for your replies. If I stop the ABX will it set me back more? If I do stop should I go after parasites, then bart/babs and then Lyme?
I'm just having a "funk" right now, but I feel so, I don't even know what I feel...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
After 4 yrs of abx and still sick, I started antiparasitic herbs and salt/c. They both saved my life and turned the corner for me. Visit lymestrategies for more info on salt/c and google parasite symptoms. Dr. K. treats all of his patients for parasites first.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
If I knew then what I know now, I would have done exactly what Gael is saying, treat the parasites. If the salt/c sounds too risky, try Humaworm.
Good luck with Christmas. I'm sure it will work out in the long run.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
My hubby took next W,Th and Fri off from work to get the house in shape, he is such a great support and I don't know where I'd be without him. Sadly he is having more LD symptoms, more often. I have no idea what we will do in the furure.
I know Christmas will work out, I'm just in a funk right now...thanks all.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
fighting this is a marathon-not a sprint
i dont want to depress you more but it took me 3 yrs...but i kept working, commuting and taking care of 4 kids
i couldnt have done it if i went on top dose prescribed so i just took what i could tolerate and really worked on detox and yeast etc
i had to do it-no medical ins if i had stopped working
some good llmds tell you to take what you can without too much herx-i think many of us have done that and gotten thru
i know some llmds push you to take all prescribed abx...regardless of herx...but some really good docs say it is ok to back off
thank god for your hubby...i didnt have that or family support...but i had good docs and LN support-make sure he knows how much he is appreciated!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I felt worse for something like 4-5 months before i started getting better. But my new Dr just told me that she thinks if you herx for my than at most 3 weeks (for the very sick) and usually 1 or 2, then you are going to hard or too fast, and should back down. I don't think she'd stop antibiotics completely for any longer than a couple days or a week, but she'd lower the dosages, or decrease the number.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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If not, I encourage you to do so as they can really make a huge difference after a couple of doses daily.
Posts: 192 | From New England | Registered: May 2011
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posted
No binders, I was just reading up on them yesterday. I just take tetra and diflucan and an epsom salt bath. Only take bath once a week though.
So now I am afraid to keep going and afraid to stop. Is anything ever easy?
And yes, I constantly thank and praise my hubby. First of all because he is a man,(wink and no offense) they need that praise it seems. Second, because he deserves it.
Thank you all...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
Treatment is rough! For me it was a solid year of worse before it began to get better. LLMD told me it would be. But, once I began improving it really was great. I no longer had to wear my leg braces and my nerve pain decreased. I could go out and do things with my kids again. Try to think about the future and push through.
If you need to back off a few days, it won't set you back. Everyone goes through the funks now and then. Emotional symptoms are all part of this horrible disease too. Depression, anger, hopelessness, and guilt are all too common.
We truly know how you feel and somehow having people that understand helps us push through.
God bless you! Hang in there.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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