@Girlie: Update on DS who goes to JC in DC

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yancync
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Date Joined Nov 2015
Total Posts : 544
   Posted 4/24/2018 12:31 PM (GMT -6)   
Just thought I'd drop in and give another quick update on DS since Girlie asked on another thread. I'm in my busy season and not on as frequently.

DS is seen by staff at JC in DC. His last appt was a few weeks ago and for the first time, his 3 biggest concerns were empty - meaning he had no symptoms to report. He is even off his inhaler although he is still testing low positive for mycoplasma and will continue to test monthly for a while.

Because he is in lacrosse season and college recruiting season he asked if he could stay on meds a few more cycles before dropping to maintenance (1 wk on/1 off) after telling me minutes before we went in that he was DONE - no more meds. Between that comment of frustration that you all can relate to and the walk into the clinic, he decided he didn't want to change anything since things are going well. I on the other hand am counting the days until he's backing off the meds. It is probably good he continues as is to really clear out that mycoplasma.

He has always felt "better" every spring/summer but this is by far the best he's been in over 3.5 years since he was bit (2.5 years in treatment at JC).

For those who are at JC, I hope you find it works for you. Everyone is different but here's an overview of how it went for DS. It was a long slog but we stuck with it and he rarely missed a dose. They did have to back track and re-hit some of the infections a few times but most of the time, there was progress, slow and steady if we looked at his symptom lists. At the beginning, new symptoms popped up, some old ones would go away and then come back for awhile (this was when he went back on babesia tx for example). It was over a year maybe a year and a half before his immune system came back online and he caught a cold. Patience has been the name of the game for DS and anyone with late stage/chronic Lyme.

I promise to post a few more updates over the next year or two because of course we all wonder if/how long remission can/will last with this type of treatment. I know I search for threads on that topic now that he's almost there.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet smile

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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 4/24/2018 3:07 PM (GMT -6)   
Wonderful to hear your son is doing so well!!

I hope one day I will be able to leave the three top symptoms section blank.
As it is now- I have trouble deciding which 3 I want to write down!!

Is the one week on, one week off what he’s currently doing?


yancync - You must be so very happy - congratulations to both of you for persevering and slogging it out - I know you have worked hard at this alongside your DS.

Such good news!
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

joee
Regular Member


Date Joined Dec 2011
Total Posts : 179
   Posted 4/24/2018 4:51 PM (GMT -6)   
yancync,

I am so thrilled to hear he is doing so well!! Thank you so much for coming by and letting us know this good news!! It really means a lot to me and helps me mentally move forward through all the uncertainty and nonsense we all go through. I also feel a sense of relief when others finally get some peace.

I also go to dr j clinic. I was feeling hopeless leading up to today, but had a good appt today and with that your wonderful news I now have hope again!

So thank you for taking the time to come here!!!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2421
   Posted 4/25/2018 9:11 AM (GMT -6)   
I know you addressed this to Girlie, but I read it anyways. smile

I'm beyond happy for you and your son. I am so happy he's doing so well now. I do hope you continue to post updates in the future, as people can really be inspired by success stories like yours!

Thank you so much for posting!

PS Kid#1 is still doing well (over 1+ years now).
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.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 4/25/2018 10:52 AM (GMT -6)   
1000Daisies said...
I know you addressed this to Girlie, but I read it anyways. smile

I'm beyond happy for you and your son. I am so happy he's doing so well now. I do hope you continue to post updates in the future, as people can really be inspired by success stories like yours!

Thank you so much for posting!

PS Kid#1 is still doing well (over 1+ years now).


And congrats to you and your DS, 1000Daisies!!!


Hope your next two get there too!!!
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 : 544
   Posted 4/25/2018 1:14 PM (GMT -6)   
1000 Daisies - so great to hear it's over a year now - congrats to your Kid #1. DS hopes to hit that mark this July.

Girlie, for the past few months he's done 3 on/1 off after 2 on/2 off if I recall. This is because his mycoplasma levels went up over the winter (which they seem to do every year) and he was still having a bit of breathing trouble. He's still on 3 on/1 off for 2 more cycles and then drops back as long as no symptoms come back. Fingers are crossed.

Joee - hang in there. I know it's hard with all the setbacks that never seem like they'll end. Honestly it was the spreadsheet that was the proof - I can't remember when I last opened it - a far cry from the days when I filled it in daily.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet smile

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

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2852
   Posted 4/25/2018 7:40 PM (GMT -6)   
i got a spreadsheet for the last 3 1/2 years and been seeing Dr. J for over a year and very little progress if at all.

as you said we're all different and Dr. J isn't a miracle worker but its worth a shot if you've failed at other LLMD's and want to try his pulsing protocols and sequencing he does.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 454
   Posted 4/26/2018 8:32 AM (GMT -6)   
Such great news -- thank you so much for sharing!

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 4/26/2018 11:17 AM (GMT -6)   
@ Rikki1 - wow, so it sounds like you had it for 2.5 years before starting with Dr. J. I'm sorry it's been so long. I do know that DS went a year untreated and it seems to take until 1.5 years of treatment (so double the sick time +50%) before DS started feeling okay.

It is so challenging to decide how long to give things a try before switching it up especially if there's no measurable progress. I hope you find some relief soon!
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma (stubborn/lingering), bartonella, babesia. Currently treating with pulsed antibiotics, moving toward maintenance and headed into remission - no sick days this school year yet smile

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