If you were healed from Lyme but relapsed...

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yancync
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Date Joined Nov 2015
Total Posts : 544
   Posted 3/16/2018 12:35 PM (GMT -6)   
DaCarte's positive news post from yesterday got me thinking.

I'm looking for information from those of you who've gotten into "remission" but then relapsed, how exactly did you know you were relapsing (eg recognized symptoms or new symptoms)? How long did you ignore symptoms returning? How long did it take to get back to "remission"? What did you do to get well again? Did you treat all infections or just the one that was flaring?

What things did you quit doing before you got sick again? Were you taking supplements or still detoxing at that point? Sleeping well? The getting enough sleep thing is what I think has kept DS well this year.

What advice do you have for staying in "remission"?

I'm thinking ahead to DS as he becomes an adult/leaves for college, hopefully, in several years and would like to know how to start brainwashing, just kidding, prepare him for the future. I don't envision him ever doing detox or taking supplements regularly - he just won't which could be a challenge. He's one of those charge ahead types and has a new ADHD diagnosis (definitely had before Lyme which worsened it - he just was able to get by until now-he's much better and realized the ADHD symptoms didn't go away).

Thanks for any insight!
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 : 2122
   Posted 3/17/2018 4:54 AM (GMT -6)   
bumping for more views

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 285
   Posted 3/17/2018 7:55 AM (GMT -6)   
I've been wondering along similar lines for myself, especially since my initial symptoms really crept up on me and it was a couple of years before I admitted that something was really wrong. It's not quite on the same line as what you're asking but I've been wondering if there's value in having a couple of CD57 and CD4 tests to use as a reference to know when you're in remission and to check if you think things are sliding back later.

A friend of mine once said the secret to a long life was to develop a chronic condition and take good care of it. Not always an easy thing to maintain.

Looking forward to other's thoughts on this topic.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 275
   Posted 3/17/2018 1:43 PM (GMT -6)   
I thought I was "cured" for about 18 months, maybe twice. Each time I started having more and more of the same symptoms, and I went to a doctor not knowing that it was Lyme (I should have considered it sooner), and I got a positive test and started treating again. I don't think I would have relapsed if I had got on the right antibiotics the first time.

Both times I wasn't on any treatments at all when I relapsed. I had the most success taking herbs until they don't seem to help any more. Getting more sleep never helped me. I would sleep all day, but I would still feel tired.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 3/17/2018 11:06 PM (GMT -6)   
I'm still relatively new to lyme, less than a year, and I'm not sure if I'm considered to be in remission yet because I'm still experiencing some symptoms. I do remember reading in Cure Unknown about Paula Weintraub's family and how they seemed to get better and then worse again once off treatment. Have you read that book?

yancync
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Date Joined Nov 2015
Total Posts : 544
   Posted 3/18/2018 6:17 AM (GMT -6)   
@ RDXtransplant - I did but it's been awhile. I'm hoping to get DS to try some HBOT or something after he finishes his abx to try and knock everything off. It will be so hard to get him to do any herbal support. He is over it all at this point!

I will report back what I find when I have time to do some more sleuthing on the internet about this topic. I also plan to ask at DS's next LLNP appointment in a few weeks.
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

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 3/19/2018 3:46 PM (GMT -6)   
Oh yanc, I struggle with this too, as my oldest kid has now been well for over a year. And I don't trust him to be proactive when he's an adult. So, I'm doing everything I can to help get him as healthy as possible before he becomes independent!

He is not currently on any treatment. But I literally just talked to him about going on a maintenance plan with herbals/supplements. I asked him if he preferred pills or taking the herbals in water. He said the herbals in water. He is so over taking pills. Honestly, I'd hate to even think how many pills he has taken over these many prior years. So, I get why he doesn't want to do pills anymore!!! Pill fatigue is real (at least in my family). sad

So, I know your question was about relapse (he hasn't relapsed yet at this point - thankfully). I can't answer those questions. But I do want to get on some herbal maintenance for him.

And oh, I highly recommend HBOT. I haven't heard of it being used afterwards, but given it's healing power, I do recommend it. It was truly instrumental in helping Kid#1 overcome this.

Wishing you the best!
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.
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