This is topic When did you know you would be okay? in forum Medical Questions at LymeNet Flash.


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Posted by humanbeing (Member # 8572) on :
 
For those who felt that they may die from this, ...at what point in your treatment (year/month/week)...did you feel a true turn for the better that gave you hope?

Or did you get that hope just to be kicked deeper down again for a long time?

Thanks
 

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Posted by robi (Member # 5547) on :
 
Your post choked me up. It took me over a year to really see that I had improved. Just this past week I felt as if I were starting over after nearly 2 years of treatment. It lasted about 6 or 7 days. Now I am back to "better crappy."

It is an incredible rollercoaster ride. I used to be very level, even .... I would consider that state of being a return to "better". I see glimpses of that. Yet I still have no consistency.

It is 1 step forward and 2 steps back. Sometimes its 3 or 4 steps back. I wish I had some predictability in my life. I am thankful for breaks in the pain but boy do I get angry when it comes back.

Sorry, I have no clear cut answer for you from my experience. One ting that has helped me is YOUR signature line. If I can take "me" out of this and consider it a journey my spirit is on .... that does help. Thanks for that.

You will improve ...... be good to yourself, eat right, don't over do it.

robi
 

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Posted by 5dana8 (Member # 7935) on :
 
Hi Human

this is a hard question to answer since evryones seems to respond differently.

But in the past I would have to say- when I herxed like a dog and stopped the abx and felt better for more than a few days.

The length and duration, as you know,are so different for everyone.

Hang in there
dana
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by robi:

It is 1 step forward and 2 steps back. Sometimes its 3 or 4 steps back. [/QB]

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Absolutely! That is one of the worst aspects of this disease!

It took at least a yr before I felt any improvement at all, and another year before I had alot of hope.


 

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Posted by Michelle M (Member # 7200) on :
 
Hi Human!

You cannot see the forest right now 'cause you're standing in the trees.

You gotta get some more treatment under your belt before you can see things more clearly.

My first months of treatment were pretty much continuous herx.

After about six months I could see daylight more and more, and for longer stretches.

Now, other than brain-fog, I'm on a stretch of almost two months of good head days. It used to be I'd pray for just two days.

Think of progress over months, rather than days or weeks.

You WILL beat it. Your herxes WILL become less severe. You will look back and say, "Whew. Glad I didn't give up."



Michelle
 

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Posted by humanbeing (Member # 8572) on :
 
Thanks for your feedback.No doubt I will be a lifer with this disease, I just want to know when I can plan again.

Based on some feedback, maybe a year or two from now?

My hubby wants to plan travel, my teacher wants me to finish my final project, friends want to know when....and if...

Maybe the hardest part is separating the monster from me. I am not this disease...(as you say robi)but I will make it shrink in importance if not symptoms than my obsession with it.
 

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Posted by AZURE WISH (Member # 804) on :
 
I have gotten better and then worse several times once due to a duck ....

the rest due to complications....

the first treatment I had was rocephin.... it took till the 7th week before I noticed any improvement.

But after that I improved rapidly.

Unfortunately I was 90% or so better and the duck took me off put me on a low dose of ammoxicillin...

needless to say I ended up even sicker then I was before The rocephin.

Best wishes
 

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Posted by Christine202 (Member # 6158) on :
 
About a year of good treatment.
 

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Posted by Andie333 (Member # 7370) on :
 
I was pretty scared I was going to die by the time I found my way to my LLMD last June.

After I'd been on abx treatment for about four or five months, I was able to cross my legs again for the first time in seven months. That doesn't seem like much, but for me, it was really hopeful.

Finally, about a month ago, I realized I was going to be okay. I wasn't sure how much longer it was going to take or what that was really going to mean, but I knew it was ultimately going to happen.

For me, anyway, having that sense (whether it's ultimately right or not) was a huge health boost.

Andie

[ 28. March 2006, 08:28 AM: Message edited by: Andie333 ]
 

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Posted by JeffM (Member # 8919) on :
 
I like this question and I am reading the responses with interest.

After 8 months tx I am beginning to feel a bit better. I guess the bacterial and toxin load are decreasing. But slowly, for me.

Yesterday I actually was able to go to a four hour class at our church, and then come home and mow the lawn. Sounds silly, but I haven't been able to get out of bed until last week. Suddenly I don't need my pain medications.

But today I am tired and spent the morning in bed.

I am thinking 2-4 years of tx, but I expect to be able to function a little more as time progresses.

The steps back are discouraging but have all been related to herxs, I think, so far.
 

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Posted by SandiB (Member # 1557) on :
 
The first four months on doxycycline were awful...I couldn't get out of bed. When I could my LLMD doubled the dose, and then two months later added Biaxin...I stayed on the combo for 18 months, and one by one the symptoms started to disappear...I realized I was getting better slowly, very slowly. That was five years ago and today I am for all purposes symptom free. Occasionally when it rains my right knee aches, but I actually feel better than I ever remember feeling. There is hope, you just have to hang in there.
SandiB
 

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Posted by bettyg (Member # 6147) on :
 
breaking this up for us neuro lymies to read...

quote:

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Originally posted by SandiB:

The first four months on doxycycline were awful...I couldn't get out of bed. When I could my LLMD doubled the dose,

and then two months later added Biaxin...I stayed on the combo for 18 months,

and one by one the symptoms started to disappear...I realized I was getting better slowly, very slowly.

That was five years ago and today I am for all purposes symptom free.

Occasionally when it rains my right knee aches, but I actually feel better than I ever remember feeling. There is hope, you just have to hang in there. SandiB

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quote:

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Originally posted by Lymetoo:
[QUOTE]Originally posted by robi:
It took at least a yr before I felt any improvement at all, and another year before I had alot of hope.

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