posted
It's one of those nights that I can't sleep because I am worried about my 17 yo daughter. She's getting better, at 40-50% from when she began treatment, but a long ways from 'healthy'
I wonder if she'll ever be completely healthy? I can't believe I just said that...
She began getting ear infections at 1 year old, as soon as I quit breast feeding. Would get fevers, crying and her eardrums would rupture. She would get on abx, and do better. As soon as she would get off them, she'd get sick again. Basically, she was on abx almost non-stop from 1 year through her 5th birthday.
After 4 sets of tubes, tonsils out and a couple of sinus rotor rooter's, she got a little bit better and didn't seem to be as sick all the time. She was 5. She also got bit by the TICK at age 5.
In 1st grade she was almost held back because she missed so much school due to illness. Same thing in 2nd grade. She seemed to catch every bug out there and was always, at least 80% of the time dealing with one illness or another. She would be prescribed abx at least 3-6 times a year for 15 years! She always got sick, got everything going around. If someone at school had a cold, she'd get it too, but be flat on her back for a week.
Now here we are at age 17. She's on abx again and from the looks of things will be for the next few years. I am afraid that all of the abx throughout her lifetime have really screwed up her body's ability to handle infections/bacteria on it's own.
So now she has Lyme, Babs, Bart and Erlichea along with a bunch of viral stuff that shows up once in awhile. Of course her LLND knows her history, but I can't help but wonder if abx are the right thing for her? We've been hammering her with them her entire lifetime and she's incapacitated by Lyme and co.
I really hope that we are on the right course and that eventually she will be a happy, healthy adult living her life to the fullest. I've felt so committed to the path we've been on and she's seen much improvement. Lately my commitment is wavering and I am doubtful.
I am thinking about options. My fear is that once she gets off abx, she'll relapse. Or, that maybe she's had all the abx she can handle and we need to go another route...
I've read Insights into Lyme Disease along with a handful of other books. There are other options for treating that sound promising and work for some.
I wonder if all of the abx early on her life have ruined her immune system and her body's ability to fight Lyme?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I always feel really bad when parents are dealing with sick children. My 22 year old son was just diagnosed with diabetes type 1, which is not lyme of course, but I still understand what it is like to worry about your sick child.
You say, "she's seen much improvement". That would encourage me to stick it out with the abx. Taking them for short periods and quitting is not a good idea. That is what will make the infections resistant and harder to control.
I quit abx twice because I was worrying about the long term effects. I used enormous amounts of herbs - Zhang, Cowden and others combined. But I relapsed both times.
From what I have read, t
The few people that have recovered with alternative medicine used conventional abx first until they were nearly in remission or they were never that sick in the first place.
I am saving alternative for either my last resort when I can no longer benefit or tolerate abx -in which case I will go to a very expensive clinic where I get IV treatments - the whole smear - and literally bankrupt myself because otherwise I am dead.
Or for when I feel well and confident enough to quit abx but want a back up.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
She can get well. Dr. J in CT has probably seen tens of thousands of children who are sicker than she is, and he treated them all with antibiotics.
Keep her on the antibiotics. You can use natural medicine to support her organs and clean up any effects of long term abx.
And, seriously, would you risk a crash by taking her off her abx? What if she lost her 40-50% gain? That would be tragic!
I think YOU need some restorative sleep, and maybe a short break from your caregiver role?
Here's something hopeful for your brain to focus on - she tolerates antibiotics! Some people end up in the hospital every time they ramp up the abx.
I hope you feel better soon. And I hope you all have a happy and healing New Year!
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If she has never been treated with antiparasitics, it would be a good idea to check into this aspect.
Parasites/worms play a HUGE part in Lyme disease and is often overlooked. You can do a search on here for parasites. Also google parasite symptoms to see if she has any of them.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
You might consider trying herbs...I used to be so afraid to stop abx and try herbs until I was forced to do so when one of my boys developed constant stomach pain from abx after 2 years on them.
I put all 3 of my kids on Nutramedix herbs and GSE that my practitioner recommended and now 10 months later the EDS machine is showing their lyme is gone. We still have parasites and viruses (and of course leaky gut) to deal with but my kids have their strength back and are doing very well...actually better than when on abx.
Someone correct me if I'm wrong, but Eva Sapi's study I believe showed Samento was more effective at killing lyme than Doxy. We have seen the effectiveness of Samento first hand.
I would be happy to share our protocol if you are interested.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
Thanks everyone! I am feeling much better today. Our long-term plan is too stick with abx and herbs, and then to finish up strong with herbs and AI once her symptoms are gone.
I get scared and tired sometimes and need to 'vent' my fears.
Thanks for the support, I appreciate it!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
I get scared listening to your plan. It does not sound good. Please consider doing AI. It takes a very short time to correct the major allergies/dysregulations. Then she has a chance to regain a functional immune system and can get well.
Posts: 9834 | From Washington State | Registered: Oct 2000
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