posted
Its terrible when your doctor says "you feel worse than when you started treatment and that's good"
Its not what I wanted to hear. She says a lot of the pain I'm having is because of the toxic effects of Bb being killed and releasing toxins into the cells. You have to feel bad for a while to feel better. If I want to not suffer so much I could cut back on the abx but that will lengthen the time it will take to get this thing into remission.
I hope I can survive this continuos herx. She gave me a tincture with stuff in it I can't pronounce that should help with lymphatic drainage. She believes I'm close to a break through, because I can't get much worse.
She plans adding cipro to fight the bartonella when the herx goes down but thinks it might be too much right now.
It was good and bad. You wish ti hear something like "you'll be better in a few weeks" but at least I'm progressing exactly as she expected, she was so good she could almost finish my sentences when I was describing my situation. She said we are right on where she expected us to be and that even though I feel really bad now I will get better in time.
That's what I'm living for.
Thank you BettyG for helping me find this doctor and happy brithday.
Posts: 199 | From utah | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's exactly the opposite of what my LLMD says. He said to never push through herxes and it's detrimental to your health. It's repeatedly in all paperwork.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Its terrible when your doctor says "you feel worse than when you started treatment and that's good"
Its not what I wanted to hear. She says a lot of the pain I'm having is because of the toxic effects of Bb being killed and releasing toxins into the cells. You have to feel bad for a while to feel better. If I want to not suffer so much I could cut back on the abx but that will lengthen the time it will take to get this thing into remission.
A little wisdom for you. Don't push through it. If you're "hoping" to survive, you're going to end up in the ER. I've seen it thousands of times, and there are no exceptions. Cutting back doesn't mean you stop treatment for weeks. You only need to stop for a couple days. It also depends on what you're treating. If we're only talking about Lyme -- then this is perfectly fine. It will not lengthen the duration of illness. What will lengthen the duration of illness is flaring up so badly that the stress and inflammation make the illness worse and send you to the hospital, where they end up pulling you off antibiotics anyway.
Learn from my (our) experience. Don't be afraid to cut the dose in half, or to stop temporarily for a few days. Also, use things like sodium bicarbonate (Baking Soda) as well as other things that decrease herxheimer reactions, like Chlorella, Burbur, etc. Baking Soda is the easiest and one of the most effective in my opinion.
quote: I hope I can survive this continuos herx. She gave me a tincture with stuff in it I can't pronounce that should help with lymphatic drainage. She believes I'm close to a break through, because I can't get much worse.
If you feel it's about to become unbearable, ask her if you can do what I'm suggesting. She'll tell you which medications can and can't be reduced. When fighting co-infections the rules are different.
quote: She plans adding cipro to fight the bartonella when the herx goes down but thinks it might be too much right now.
She's wise to wait.
quote: It was good and bad. You wish ti hear something like "you'll be better in a few weeks" but at least I'm progressing exactly as she expected, she was so good she could almost finish my sentences when I was describing my situation. She said we are right on where she expected us to be and that even though I feel really bad now I will get better in time.
You will improve. You need to use some personal discretion though and not try to be a hero. Clarify with her what is reasonable and be honest about your limits. Do not end up in the ER because of unbearable herxheimer reactions, or you'll regret it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Let me reinforce this one more time: If co-infections are involved, the "starting and stopping" time frame is entirely different. Medications can not just be stopped if other infections besides Lyme are in the picture. They require a different time table to stop or start medications. Some medications should not be stopped regardless, while others can be.
Be sure to check with her about how to approach this. It's really important that you have a plan in place so you know what to do, when to do it, and for how long.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thank you so much for your input. We went through pretty much everything you've mentioned. I have many options and I know which ones I can stop and in what order they can be restarted. I've learned to listen to my body and act accordingly, a piece of advice some one from this group gave me ( can't remember who).
Right now its bad but its bearable. My joints and tendons itch, hurt and then burn, then they repeat that pattern. Its toxins, but the supplements and other stuff I'm doing are keeping me in the game. I won't let it get to be too much.
I want to live now, I didn't think I did just a few months ago.
Posts: 199 | From utah | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You sound like you've got the tools you need then to make appropriate decisions. Glad to hear you're sticking around. Dying is overrated -- it's like going back to where you were before you were born. *lol*
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
willis, glad you posted, and glad things are going well and you 2 are compatible!! you are most welcome for my assistance in find this person!! xox
glad you changed your mind, and life is worth living again; we're HAPPY to hear that one.
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