Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
OK. My daughter's been on various mixes of abx, vitamins, supplements, and, of course, probiotics since June '08 (after being undiagnosed for about a year). As most of you know, it's been the typical myriad of strange and painful symptoms. We've ridden the lyme merry-go-round of getting hopes up, only to have worse symptoms appear....
I almost am afraid to ask this- but does anyone know when or how you know that you are getting better? In Dec. she had 10 0r 11 relatively "good" days, which was a record. And, in Jan. the first two weeks, including herxing symptoms that caused her to be unable to walk at times, she asked for crutches, etc....HOWEVER, the last two weeks have been "good!" She was able to go to the last several classes at school for two weeks, AND do a little homebound work afterwards. (The transition back to school has been incredibly stressful with all the "mean girl" junk that takes place, but, even so, she's done well, physically.)
So, this is a good problem to have-
I don't know the signs of healing from lyme. I understand it will probably stay in her system, dormant, forever, or with relapses...And, I've read stories of people who have gotten better....I know everyone is different. But, what are they typical patterns of healing? Good days stretching out? Again, my daughter's herxes are still hellacious- or have been. I'll let you know about the next one....
I've read most LLMDs like to continue abx until patients are symptom-free for several months. So, we're not there yet. Can I get my hopes up yet, though?????
This is a long one....Sorry!
Thanks! -Leslie :)
I almost am afraid to ask this- but does anyone know when or how you know that you are getting better? In Dec. she had 10 0r 11 relatively "good" days, which was a record. And, in Jan. the first two weeks, including herxing symptoms that caused her to be unable to walk at times, she asked for crutches, etc....HOWEVER, the last two weeks have been "good!" She was able to go to the last several classes at school for two weeks, AND do a little homebound work afterwards. (The transition back to school has been incredibly stressful with all the "mean girl" junk that takes place, but, even so, she's done well, physically.)
So, this is a good problem to have-
I don't know the signs of healing from lyme. I understand it will probably stay in her system, dormant, forever, or with relapses...And, I've read stories of people who have gotten better....I know everyone is different. But, what are they typical patterns of healing? Good days stretching out? Again, my daughter's herxes are still hellacious- or have been. I'll let you know about the next one....
I've read most LLMDs like to continue abx until patients are symptom-free for several months. So, we're not there yet. Can I get my hopes up yet, though?????
This is a long one....Sorry!
Thanks! -Leslie :)
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I was scrolling through some of the other posts and joined thinking perhaps I would get some solace with others. Then I just noticed how many ppl have posted and no one has replied to them.... so why would this be called a SUPPORT group if none of us are supporting each other through this???
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
Sorry about the Mean Girls! I would never go back to junior high if they paid me.
Congrats on this recent turn of events. My intuition tells me these are in fact "healing signs".
But I have symptoms that have greatly been reduced. For example, the neck pain and stiffness is all but gone. My concentration is so so so much better than it was this summer. My vision is consistent; not better, but I'd have days when I swore I didn't see as well as teh day before, and suddenly, it'd POP to ok again. Weird.
I've heard that over time, herxes get less and less intense, and that within a cycle, there are more good days. And the bad days are less difficult than the previous month.
I think the changes are subtle, not dramatic. Something I did before I started treatment was to take a symptom list I got from my doctor, and check off the ones I had.
I'm glad I did that, I have looked at it just once, but I'd already forgotten a sx that I no longer have. I don't remember now what that is (so typical of Lymies, eh?)
But it sure sounds like you daughter's making significant progress! Attending school? Doing work from home? That's awesome progress!
Something I stuggle with is, when I have a bad day after a good stretch. My family reminds me, thankfully, that the bad day doesn't undo or discount the good stretch I had. Hard to remember that sometimes, but I do believe they're right.
Best to you and your daughter!
Jenn
When our daughter goes from a good day or days to a horrible day or herx, we get discouraged...It's SO hard not to, when she's feeling so poorly. Charting/keeping her calendar of symptoms helps me to keep it in perspective....
I'll take any progress at this point, but it would be nice...to see the "end" in sight!
Thanks again :)
Leslie
Keep up with what you are doing, and many healing thoughts and hugs to your family and your duaghter.
Alana
It great news that she is making progress, I would suggest that you
keep your daughter on the most nutrient rich diet you can give her,
in order to give her system the best chance of repair and recovery.
I never say never or try to think that I may not actually be cured. I think that's important. I feel that how well I do is going to rely on how well I feel I can do.
I also think that one of the signs of improvement is fiinding yourself frustrated with what you cannot do, but wish you could do.
Good luck!!!!
I remember stepping over a small piece of paper for 3 days before I had the energy, or even the give-a-damn, to pick it up. Sadly, I was very proud of myself when I did pick it up! That, at the time, was progress for me :)
My doctor said today that I have pink in my cheeks again. She said a common sx she sees is that Lyme patients have a gray pallor; and once they're getting better, their healhty color returns. I see it in my eyes, too. More alive, or more "there" somehow.
All subtle things, but ones we can take as good indicators, right??
I miss that guy. I looked forward to him coming...he was a distraction since I didn't leave the house much, know what I mean?
What were we talking about?
Becca, LOL!
But other times I have both the physical and mental energy to do things. Granted, right now they are very limited, but it's progress nonetheless.
Becca, just what were you doing with that nurse? :)
I just read about your daughter, this is good. I can only hope my daughters start to see some improvement. Don't let the "mean girl" get out of hand though. Make sure she is telling you everything, because if she is holding anything in, it can be very destructive. I am living with the results of friends not getting this illness and it is devastating. Also keep an eye out for whether your daughter is pushing herself more than she should because the stress of that could be bad as well. I know these kids want life to get back to normal, but if she pushes too much too quickly it could do the opposite. I can not tell you what to look for as they get healthy, I can only tell you what to look for if they do not. I really am happy for you and your daughter, and I hope it continues.
The other Leslie in Virginia
It's back to the herxing week...So, no school today. Still, not quite as severe as before.....Baby steps....
Becca, could you send me the name of your male masseuse, I mean, nurse? (Ha ha!)