My wife has been treating with abx and herbs (mostly herbs) for the past 20 months and was doing pretty well with the occasional flare up but generally on an upward trajectory.
But over the past couple of weeks we've had a devastating slideback - tonight she's back to the same condition she was in 20 months ago. She's barely able to get up off the couch and walk around.
Has anybody experienced this while treating, like back to square one? Was there any subsequent recovery?
Any advice or experiences would be nice to hear right about now - we are feeling pretty down right now.
Posted by yanivnaced (Member # 13212) on :
^ anybody?
Posted by kelmo (Member # 8797) on :
I just wanted to respond. I don't have an answer.
I believe when we get this organism, there isn't a "cure", but we go into remission.
Hopefully, this setback is shortlived.
Just wanted to let you know that I read your post. Give your wife a hug for me.
Posted by bettyg (Member # 6147) on :
sorry for your wife,
no answers; on 6 months of supplements and got much worse .... fatigue unbearable and from there went really downhill from there.
i'm making progress now with my cpap for sleep apnea, where i stop breathing while sleeping.
does she have apnea too? been tested? a possibility...another member on another board mentioned it to me; never would have tested if it wasn't for her suggestion to do it.
do you have insurance ?? was $10,000 when i had it done 4 yrs. ago. best wishes to her and you; thanks for being a sweety and trying to get good info to help her.
i too wish her a short-lived event.
Posted by lymednva (Member # 9098) on :
Has she treated for Babs? My symptoms began to worsen beginning last summer and continuing through last month.
My LLMD finally recognized that this coincided with my stopping Mepron at end of July. I have just begun to treat Babs again.
One symptom of Babs is bad fatigue, which has always been one of my worst symptoms.
Posted by jt345 (Member # 19638) on :
Hi
I hate this diease. I have had lyme for 20+ years now. I spent about the last 18 mounths abx free,but slowly relapsed back too the point of going back on doxy.
The herbs and other natural cures just masked the symptoms for me ,until I was back too the point of were I started . It seems to creep up on You don't it.
I am lucky too have a Doctor Who worked with my LLMD in the past,so She has offered too work with Me on orals.
Some of Us will need to be on treatment the rest of our lives,I guess. At this time I am working my way back up too 400 mgs ,of doxy after having a good and strong herx. So I know I have a good build up again.
If I need too I will go too biaxin,and flagfl for the summer months. I do think in some case it will be a life long strugle with lyme and it's coinfections.
I happened to be one of those cases.Too little too late. How long did Your wife have lyme befor She was first treated?
I think that might be a factor here. And what kind of treatment did She have durning Here first go around? I ran out of money too treat and only IV's seemed too help durning the end of my last go round.
Can You find a Doctor too treat?,can You go back too the LLMD she had been seeing? I know what a let down it is to think She will have too start over again. But it might not be as bad this time around,You know how and what too look out for,so just jump back in the ring if You can and put the gloves back on and go after it.
It really is the only choice isn't it? Know You are in My prayers and feel free too post here,PM Me anytime,I'm not goin anywhere.( if I can help,I sure will try)
Someday We will have a cure,but until that time We have too keep on fighting. Don't let these bugs win. never give in or never lose hope.
Sorry this has happened. when given cold cereal,warm it up.
be as well as You can be today
appleseed
Posted by Vermont_Lymie (Member # 9780) on :
I know, it is very discouraging to experience that. I had something like that happen after a year of treatment with a generally up trajectory, after I cut down and then stopped abx.
The recovery was faster and easier after I restarted treatment. Lyme has so many niches to hide in and so many forms, it takes long-term tx to battle this bug and win.
I hope you and she will keep fighting! It's a temporary setback, do not get too discouraged. The best sign is that she has responded to treatment before so that will continue.
I have used lots of herbs and supplements too in treatment, from the start and continue to.
However, I have found abx to be much more effective in lyme treatment.
Posted by Nexis (Member # 19780) on :
I also have Babesia and my fatigue is indescribable!
Has your wife been tested for any co-infections?
Posted by yanivnaced (Member # 13212) on :
Thanks a lot for the words of encouragement guys! The ups and downs are the worst part of this illness.
She does have babesia - her first test was positive and she did Mepron for a short while but had to stop due to intolerance.
In fact she was not tolerant of most pharmaceuticals on the first round of abx in 2007 and had to do half dose of everything. She would either react or herx so badly she would be debilitated. That's the reason she stopped abx and did herbs for the last 14 months. For the babs she currently takes artemisia tincture.
We're shopping around for an LLMD now and hopefully get her back on abx soon. Hopefully she'll tolerate higher doses this time around.
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