Finally decided to post teen DS success fighting Lyme & Co

Oh so happy for him and all of your family. Keeping faith and hope that he continues to be symptom free!!!!!!!

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.

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!

Ahhhh... Thanks, PeteZa. You always have a good answer!

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

Ho Ho Ho,
The Dude

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.

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.

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!

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.

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!

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?

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.