posted
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
-------------------- We are spiritual beings on a human journey...
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
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
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
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.
-------------------- We are spiritual beings on a human journey...
posted
About a year of good treatment.
Posts: 437 | Registered: Sep 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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 ]
Posts: 2549 | From never never land | Registered: May 2005
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posted
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.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
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
Posts: 991 | From USA | Registered: Aug 2001
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bettyg
Unregistered
posted
breaking this up for us neuro lymies to read...
quote: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
Humanbeing, For myself, I know I have NOT improved since 8-04 when abx started plus the yeast & other meds.
Earlier this month, I was up to 19 meds compared to 1999 of 2 meds only!
Beginner LLMD notes stated he didn't know what to do with me since I wasn't getting better ... only worse!
So I'm going out of state to LLMD for CHRONIC LYME, and hope to turn that corner. Unfortunately, she doesn't take insurance; so that worries me a bit since testings/appts. plus travel expenses: GAS, lodging, & food add up quickly.
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quote: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.
I also had well over a year of treatment before the cynical part of me felt like there was any hope. But the eternal optimist wouldn't let me stay discouraged for long. It's a long fight. A microcosm of life in its entirety!
One thing i always tried to do was, to appreciate every little improvement I could manage to see, and focus my life energy on continuing that improvement.
I look now at the entire course of these illnesses as a "training ground" for living my life; for fighting obstacles; for "achieving victory no matter what". To bring out deep, calm, happiness up from deep within my life, even in times of suffering.
Now the focus of the battle has changed. I do declare at this point that it's looking real good in the physical department-- off antibiotics for 3 yearsand still improving. But there's still plenty of loose ends to re-tie and lost ground to be recovered, and residual effects to challenge! (as well as suffering folks to help if I can!) DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Thanks for your heartfelt honest responses.
I am reading the same river twice by alice walker. three years into her illness (undiagnosed) she remembers that it was her ability to keep going, taking trips, attending functions etc that she started getting well.
She says that when one keeps going, the immune system kicks in and turns up. This makes sense to me.
Hope is critical and I need to wrap myself in it--
I need to stop thinking that the cure is "out there somewhere"...in a new herbal, or just the right vitamin, an abx change....
Alice Walker is teaching me to have more hope and faith and trust in myself and the universe to heal an ill body.
There was a time before the 70's when people got lyme, suffered with an unknown "illness" possibly for many years or life and managed to survive.
(many on lymenet probably experienced this--right now).
I have to focus on the idea that with patience and non abusive treatment, I can keep my spirit in tact and this is a major goal.
I appologize for rambling but we must not loose sight of the role of hope and faith in healing. I lost it for awhile there and now know I cant afford to do that again.
This should be viewed as a "medical" treatment.
Best
-------------------- We are spiritual beings on a human journey...
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