posted
Just wanted to post a happy moment for those with children/teenagers still struggling........
DD went to her first dance on Saturday night! This may seem like no great feat; however, for a 15 yo who has been struggling with this illness for the past 4 years, this was a major moment in her life--one that brought great joy to her and to me!
Over the past 4 years, she watched as her friends disappeared from her life and heard of the dances and proms and social events that she just didn't have the energy to attend. She was basically homebound for much of the first 3 years--too tired to do much of anything, and if she did leave the house, her energy was only good for a small stretch of specific hours in the early day.
Since last August, we started seeing evidence that she was truly improving. She started being able to go out later in the day and less and less time was required for her to recover from those ventures. She started to be able to attend classes again, gave a voice recital, and go biking, etc.--
This Saturday night--(after a 2-day major driving adventure of 6+ hours each way, then tons of walking once we arrived at our destination in the bright, hot sun, and then getting her period to top everything off--so more fatigue and cramps)--she was miraculously able to go to the dance and had a wonderful time.
She danced for hours in a crowded, loud, hot gym and had a blast being surrounded by her friends, both boys and girls--finally she was able to be a "normal" teenager! She only popped her head out once or twice when coming over to get some water.
She was tired on Sunday--but no more tired than I think any teenager may have been after a night of dancing and socializing.
Anyway, just wanted to share--there is hope--your children will get well--it is a long and oftentimes discouraging road, but return to health will come!
She is still not 100%, though 95% is what we'd say at the moment. We think we're now dealing with issues other than Lyme, etc., such as hormone/thyroid/adrenal issues--we're hoping this is the last missing piece of the puzzle.
When that last 5% is eliminated, I can't wait to write a true 100% success story--the great thing is that I finally know it is coming, just need to continue to be patient.
Hugs to all!
Posts: 648 | From northeast | Registered: Feb 2009
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surprise
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Wonderful! :-)
Thank you.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
So happy. I know exactly how you feel. Having a sick child and then watching them regain their health and start to enjoy life again is the greatest gift ever. Blessings to you and your family.
Posts: 747 | From Utah | Registered: Apr 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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linky123
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posted
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Posts: 697 | From CA | Registered: Dec 2011
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Tammy N.
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What a wonderful story! It's so good for us to share in the good news. It brings hope to those who are still struggling. Wishing you and your daughter continued blessings.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Catgirl
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posted
Awesome! And 95% sounds great! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I'm so happy for your daughter and your entire family....... may she continue to get better and better..
Posts: 143 | From Louisville KY | Registered: May 2010
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nonna05
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Yea! So happy for you both....
Anything stand out as the page turner?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
That is awesome and encouraging. Could you please let me know what did the trick for her. My daughter, while still trying her best, still struggles with this terrible fatigue. Any help you could give would be appreciated. Please PM me if possible so the censors don't take all of the meat out of your reply. Thanks in advance and congrats
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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dbpei
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posted
Thanks for sharing such great news! I can't imagine how painful it must be to watch your child suffer with lyme. So glad she has made these incredible strides. I'm sure there are many who want to hear her story.
Posts: 2386 | From New England | Registered: Aug 2011
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beths
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So happy for you !
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Awesome news. Thank you for sharing. My daughter is 18 and has been in bed for 3+years. I can't wait for the day when she can do what teens do. Thank you for sharing!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Thank you, everyone, for your well wishes and support.
I know when I first signed up here I was on here daily for hours scouring the posts for anything that might give me promise that my child would recover. I hope this post gave encouragement for those still struggling.......your children (and you) will get well!
Regarding what ended up working, all I can guess at is continued treatment and trusting my gut (wish I had trusted it sooner, actually). When I say continued treatment, in our case it was abx that targeted all the co-infections (had the best LLMD), followed by herbals. What I regret is not trusting my gut about stopping the abx sooner when I felt she had reached a plateau.
In our case the plateau really was a sign that dd had gotten all she was going to get out of abx and that we needed to now go another route. LLMD had suggested we now go the IV route, but my gut felt this wasn't right for our dd.
(This isn't a judgment statement, just what we felt was right at that moment for our family. If IV had been suggested earlier in treatment, I think dd would have probably gotten better sooner; however LLMD felt slow and steady would be best for her at the beginning to lessen the pathogen load so........)
Once we transitioned off abx to herbals, we saw amazing and quick recovery. I believe the abx had done their job with killing and now the herbals were cleaning (while still gently killing).
Unfortunately with this illness, there is no one way of treatment since everyone's body and exposure to pathogens is so different. Having a great LLMD is key; however, even with that, you must research continuously for yourself. DD's LLMD is fantastic; however, he knows how to treat in only one manner. So, researching and knowing how to supplement was a major ongoing task.
DD also has an amazing LL NP; however, there are things the NP would want to prescribe that just didn't match what my research had uncovered--so really knowledge is everything--always research what is being prescribed, see what the side effects are, etc.--you have a choice as to whether or not it would work for you.
FYI: A year ago (May 2011), we were so demoralized that we didn't know what we were going to do--dd wasn't getting better; IVs were not what we wanted; and we didn't know what our next step was (or rather we were nervous to take the next step), but we are so glad we trusted our gut--so far it has worked out (keeping fingers crossed that it continues)--
So a lot can happen in one year--just keep looking for what will work for your family, trust your gut when it is time, and don't give up.......
Hugs
Posts: 648 | From northeast | Registered: Feb 2009
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surprise
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Did your daughter have rages? Where she was just completely out of control?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
No, Surprise, my dd never had rages--she'd get major mood swings from happy to mad in an instant if someone said or looked at her the wrong way but never raged, would just storm away--no "tantrum-type" rages--
Posts: 648 | From northeast | Registered: Feb 2009
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surprise
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posted
Thanks for answering.
My daughter is a puzzle. I don't know which way to go sometimes.
Thanks again, and I'm so happy for your daughter and all your hard work :-)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Brussels
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posted
I also believe on trust your gut way. Never ever I would have done all these months and years of abx with my daughter nor with myself. We are also both in full remission!
Congrats to Mom with Hope. Wonderful news. Just continue treating, until disease is fully gone, so that she doesn't relapse.
It is SO possible to have our lives fully back!
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
God knows I needed to hear this tonight. My son and i are both struggling along and I've felt some hopelessness today. Thank you for sharing. May I ask what herbal protocol you ended up following? I'm thinking we'll stick to a year's protocol of abx n then to herbal if needed. It rips your heart out to see your child so sick. I'm so glad you have been given hope after years of sorrow and fear.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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tick battler
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posted
Thank you for sharing your wonderful news! I have had the same experience with my children. I wish I had switched to herbals sooner because that is what got them better. They made significant progress on antibiotics during the first year but then stopped herxing and plateaued for the second year. A year on mepron/zith/art could not heal their babs.
At that point we switched to herbals and that is what really got them to the next level. If we could just get out of PA, I feel we could stay healthy but the problem is that they keep getting reinfected! Every winter they get back to normal but then with the warm weather of mosquitos and ticks, they get sick again. I believe many of the mosquitos around here are carrying babesia and some also carry lyme now. But we are still having success with herbals for the reinfections.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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dbpei
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What are the herbs that you are using that have helped you all to get well? This is such encouraging news.
Posts: 2386 | From New England | Registered: Aug 2011
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CherylSue
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Thank you so much for sharing your story! Best wishes to all of you.
Posts: 1954 | From Illinois | Registered: Aug 2007
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tick battler
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We now go to two natural practitioners. One does electrodermal screening and her core protocol is samento/cumanda/burbur with GSE for the babesia. She also gives energetically imprinted homeopathics for EBV and other issues. And treats parasites with Carprasite or Paracleanse. 4 out of 5 of us got well on this protocol.
My husband did 3 years of abx and improved a little but not too much. The above natural protocol helped but then he needed the Dr. K lyme cocktail to really see improvement in his case. We started on that from a practitioner who trained under Dr. K and uses his form of ART testing and all of his protocols. The Dr. K lyme cocktail seems to work faster than the first protocol we were on but the other one still works for most people.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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