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UCSDMom
Regular Member


Date Joined Apr 2017
Total Posts : 53
   Posted 1/24/2018 10:59 PM (GMT -6)   
Hi all - my 21 year old DD is coming up to her 2 year anniversary of her first symptoms, 1 year anniversary of diagnosis (CDC+ LD, Bartonella & Babesia), and nearly 7 month anniversary of treatment. She's been on bicillin (penicillin) injections every 2 weeks, zithro, plaquenil (anti-inflammatory), Nystatin (anti-fungal), Trental (cell support), Bromelain (pineapple enzyme - don't know what the heck it was for..lol) since last June. All prescribed by her LLMD in Sorrento Valley, San Diego. Her neuro symptoms are gone (tremor, blurred vision, vertigo), as well as her joint pain, and cardiac symptoms (chronic tachycardia). The primary remaining symptom is fatigue, and she still sleeps 12-14 hours a day. Her exercise tolerance is up slightly. She recently had an appointment & was taken off everything except bicillin (injections now every 3 weeks), zithro, & plaquenil. The NP added Cordyceps (immune-boost) and DD started acupuncture and a mindfulness class. It's been a long journey (especially given her age,19-21), and her college experience has been signicantly impacted. But, she is meeting lots of people through the university disabled students association, and now serves as an advocate for others when possible. I would never wish LD on anyone, let alone my child, but there have been some growth experiences for all of us, as well as moments of deep gratitude (e.g. that she was able to stay in school part-time, and has some very understanding professors and boss!) As a parent, I feel hopeful that she might fully recover, or, maintain a somewhat "normal" functional life. I know those little bacteria buggers can sometimes hide & re-surface, and we will forever be vigilent. Thanks to all - it was so very helpful to have this forum to turn to - especially when we did not yet have a diagnosis/treatment plan. This is not a goodbye, but rather a check-in and an intended message of hope for all of you fighters and caregivers out there!
Mom

Post Edited (UCSDMom) : 1/25/2018 9:51:55 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 1/25/2018 12:42 AM (GMT -6)   
Hi UCSDMom - Thank you for coming back here to post an update...and it's great news !!

What a relief it must be for the neuro symptoms to be gone.

I bet she will be fully healed soon.


Good work, mama!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 9:51 AM (GMT -6)   
Hi UCSDMom!!! I too wish to thank you for coming back to post an update!!! What wonderfully exciting news!! Congratulations to both of you!!!

And what an accomplishment for your daughter, to not only have hung on through what she did, but to stay and be an important advocate for others when she could!!

My wishes for continued success and thank you again for the update and the encouragement with your post!!

Can't wait until we can add her story to our success stories!!!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/25/2018 10:10 AM (GMT -6)   
UCSDMom, this is such good news.

It sounds like a horrible disease has led your DD to a field of helping others.

I know my lyme (once I was well enough) sure led me to helping those in my area. I think everyone in a 50 mile radius has my email addy.

Thank you for coming back and sharing your story. I personally know that it is so hard to watch your child be ill.
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