Finally decided to post teen DS success fighting Lyme & Co

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yancync
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Date Joined Nov 2015
Total Posts : 551
   Posted 12/22/2017 9:10 AM (GMT -6)   
I've been hesitant to post this although I have talked about it with other parents here behind the scenes and in a few replies to posts - it appears all DS's symptoms are gone. I've been waiting for the other shoe to drop so to speak but it hasn't and yesterday his lab report for mycoplasma p. came back negative for the first time. He will treat another 3-6 months and then if still well, will move to maintenance. I know that it is still lurking in there but for now he is well.

I know it can be hard or inspirational or both for others to read about success so I'm posting links to the details so you can decide if you want to read more.

For more details see my blog post here:
www.parentsoflymekids.com/parents-of-lyme-kids-blog/some-lyme-cheer-or-is-that-even-possible

I also posted about his CBD experience here - as I can't underestimate that all his lingering symptoms except for the breathing disappeared when he started CBD last July.

www.parentsoflymekids.com/parents-of-lyme-kids-blog/cbd-hemp-oil-great-addition-to-our-lyme-toolkit
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

goshawk
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Date Joined Sep 2016
Total Posts : 2299
   Posted 12/22/2017 10:48 AM (GMT -6)   
Oh so happy for him and all of your family. Keeping faith and hope that he continues to be symptom free!!!!!!!

yancync
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Date Joined Nov 2015
Total Posts : 551
   Posted 12/22/2017 11:12 AM (GMT -6)   
Thanks - trying not to get too excited but they are great signs and I always enjoy reading success stories.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 12/22/2017 11:17 AM (GMT -6)   
yancync thank you for posting. I know when I was new to lyme I so needed positive stories. The tiniest bit of encouragement and hope kept me trying. So thank you for those that are not responding but just reading.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/22/2017 11:41 AM (GMT -6)   
Great news, yancync!


Does your son still use the CBD?
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

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/22/2017 11:46 AM (GMT -6)   
Forgive the dumb question, but I cannot figure-out the "DS" acronym. From the context of your other posts, it doesn't seem like initials of a name. What am I missing?

Sincerely,
Dummy

p.s. Awesome news! Congratulations!

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/22/2017 11:53 AM (GMT -6)   
Darling Son is what I assume it is.

Don't feel dumb. I had to google it when I first came here.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/22/2017 12:15 PM (GMT -6)   
Ahhhh... Thanks, PeteZa. You always have a good answer!

Now, please enjoy this: Frank Sinatra - Jingle Bells (1957)

Ho Ho Ho,
The Dude

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/22/2017 12:50 PM (GMT -6)   
Or Dear Son. Whatever works...lol.
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

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2924
   Posted 12/22/2017 1:19 PM (GMT -6)   
always love hearing positive stuff esp for kids.

posting 'success' stories is hard because this disease has the ability to stay down and out for weeks, months even years then pop back up and hit you with a left hook. you never know if you've beaten it for good but even with that said that should keep folks on their toes to live a clean lifestyle.

CBD is good stuff its useful for some depending on symptoms. It did nothing for me or my wife but as usual mileage will vary.

Szabo246
Veteran Member


Date Joined Sep 2017
Total Posts : 505
   Posted 12/22/2017 1:33 PM (GMT -6)   
Thanks so much for taking the time to post this, it is so powerful to read success stories and you’re giving so many people that hope back.

Really happy for your son may he continue to go from strength to strength! smile

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 12/22/2017 2:18 PM (GMT -6)   
So happy for you & your son! May I ask about the myco test? Was he igm + or just igg? Seems that myco may have been a big player for him. Do you feel beating that down is what helped? I am high igg + and always wonder if it’s a big deal or not.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/22/2017 2:37 PM (GMT -6)   
This post makes me so incredibly happy for the both of you! Big,warm hugs!!!! Peppermint Tea

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 12/22/2017 3:14 PM (GMT -6)   
Thanks everyone. I have been leery of posting because it's really never over but it is possible for some to get back a huge chunk of health. I've been reminding him that he will always have to be listening to his body. He's a go-getter so once he's on his own, it will be interesting to see what happens and if he can stay healthy. I hope his story will be hopeful to the other teens whose parents are on this board. One foot in front of the other through this...

ko7 - they are currently testing only IgM but have done both in the past. He is always high for both. I think with Lyme the tests can show differently than what is typically expected. Myco has been his biggest issue and getting reinfected didn't help. As J Clinic says, everyone seems to have that one last infection they have to chip away at and his is myco.

Girlie, yes he is still on CBD and I'm afraid to let him go more than a day without, lol. I was just researching this morning about how long he should continue and haven't found a definitive answer.

CBD is like all the Lyme/herxing stuff - what works for some, doesn't for another!

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 12/22/2017 6:54 PM (GMT -6)   
Awesome update and encouragement to us all!

Thank you!
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast & leaky gut.Restart Buhner for BBB.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2474
   Posted 1/11/2018 6:30 PM (GMT -6)   
Yanc, I am beyond happy for you. Truly I am. For you, your son, and your family. Thank you for fighting it. Your son is lucky to have you!!

Curious - what are you planning on doing for "maintenance" moving forward? I'm not sure what I'm going to do for Kid#1 (who is fast approaching 1 year of wellness now).

CONGRATULATIONS. Beyond happy for you!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 1/12/2018 10:17 AM (GMT -6)   
Hi 1000Daisies,

This is a hard one but he would say yes and having come so far, despite my misgivings of still being on abx, the answer is most likely YES.

Here is a brief update. Still going well for him. JC started testing him monthly for his myco after the last appt. and moved him back to a 3 week on/1 week off schedule (he had done 3 wks off/2 weeks on prior). His test last month for myco was negative for the first time in 3 years! We were told to stay on the heavier abx for a few months to make sure it really knocks it out. If his tests are still negative when he goes back at the end of Feb, he will probably start maintenance which is 3 wks off/1 wk on. JC has found that most kids can do 1 yr of maintenance and then go off but some kids and many adults require up to 2 years of maintenance.

I hope I can convince DS who at that point will be an HS senior to do some maintenance herbs but he is SO tired of this I don't know how that will work.

Let me know what you think.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 1/12/2018 1:10 PM (GMT -6)   
yancync said...
Hi 1000Daisies,

This is a hard one but he would say yes and having come so far, despite my misgivings of still being on abx, the answer is most likely YES.




Was there a question that 1000Daisies asked? Was this referring to maintenance now that he's healed?
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
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/12/2018 1:21 PM (GMT -6)   
Congratulations on DS's improvements, Yancync!! You've been hard at work on helping him and it's showing!! I'm so very happy to hear of his successes and hope that it continues!!! And hopefully you can get him to start and stay on those maintenance doses, which aren't much, compared to what he's been through!
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/

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 1/12/2018 1:25 PM (GMT -6)   
I was answering that yes we would do the JC maintenance which is antibiotics for 1-2 years of 3 weeks off/1 week on I believe. Just getting tired/worried about antibiotic use for so long.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 1/12/2018 1:59 PM (GMT -6)   
yancync said...
I was answering that yes we would do the JC maintenance which is antibiotics for 1-2 years of 3 weeks off/1 week on I believe. Just getting tired/worried about antibiotic use for so long.



I know someone who sees Dr. J and was on maintenance - it was only three days per month.
I'm wondering if more than that is needed for youth?

It is a long time to be on antibiotics....but what's the alternative? Switching to herbs?

Has he been treating for 2 full years now?
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

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 1/13/2018 12:30 PM (GMT -6)   
That is correct - when I say weeks on and off for Dr. J it means pulsing - so a week on is just 3-4 days depending on if it's a Flagyl week or not. So for DS the on week will probably be 3-4 days depending on if they include Flagyl in maintenance (which they probably do).

I hope to get DS to do some sort of herbal maintenance after he finishes with the JC protocol but not sure he would be responsible enough or remember to do it if he goes off to college.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 1/13/2018 1:24 PM (GMT -6)   
Yes, that makes sense - the Dr. J 'one week' would most likely be 3 days.

...and that would be 3 days a month... Thanks for clarifying.
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
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