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Symptoms come right back stopping clarithromycin

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Posted 6/11/2020 9:35 PM (GMT 0)
Hello all, our son was diagnosed with Lyme close to a year ago.
We have seen minor improvements, but he is not even close to being back to “normal”.
Has anyone experienced symptoms coming back within 48 hours of stopping clarithromycin?
It has happened twice, both times the dr has put him back on.
I don’t like him being on the medicine for so long.
Thanks for any feedback.

Post Edited (Kevin3039) : 6/11/2020 3:39:35 PM (GMT-6)

Posted 6/11/2020 10:19 PM (GMT 0)
Is that the only medication or form of treatment that he has been on this whole time? People usually require an assortment of meds. Is he seeing a Lyme specialist (LLMD)? I'm sorry to hear that you have not seen more improvement.

Welcome to the forum! Glad you found us.
Posted 6/11/2020 11:38 PM (GMT 0)
Yes he has been seen by a Lyme specialist.
He has been on the Cowden protocol as well as minocycline.
He just can’t get any relief.
It seems the day after they take him of either antibiotics the symptoms come right back.
Even on the medicine he’s no where near himself.

Post Edited (LAXdad3039) : 6/11/2020 6:02:26 PM (GMT-6)

Posted 6/12/2020 12:19 AM (GMT 0)
Welcome to the forum, LAXdad

Has your son been treated for Bartonella and/or Babesia?
.. or just lyme?

Also - is he only on one antibiotic at a time?
llmd’s usually prescribe at least two abx when treating the infections.
Posted 6/12/2020 12:33 AM (GMT 0)
He tested negative for Bartonella and Babeisa.
He is on both anti-botics currently.
He also takes Gluathomine also.
We feel helpless as nothing seems to get him “over the hump” as it’s been a year.
Posted 6/12/2020 2:29 AM (GMT 0)
If he has some sort of improvement then you know your on the right track. It can take many antibiotic combinations until you find one that works. Also, coinfection testing is not very reliable. Most llmd’s rotate through meds for bartonella and babesia.

Has he been on mino & clarithromycin only? I know you mentioned cowden too. I’d say he needs to try some different antibiotics.
Posted 6/12/2020 11:21 AM (GMT 0)
The same happens for me. Every time I try to quit just one of my abx I relapse bad. Usually takes a week or so to happen after stopping. Been on abx for three years now. Seeing some improvement but like your son no where near normal. This disease is a nightmare and finding a Dr that can/will help is very rough. I hope your son finds relief soon. I'm sorry he and you have to go through this.
Posted 6/12/2020 11:35 AM (GMT 0)
Thanks for the reply’s, it sounds like we are in for a long haul.
He does not get the fevers any more, just the tired, headache and stomach discomfort.
He does not have the interest or energy, that’s what’s sad. He used to be up at the crack of dawn, smiling running and playing all day.
Posted 6/12/2020 1:03 PM (GMT 0)
I'd like to bring up immune modulating. I've seen so many people recover via antibiotics or IVIG to then slip back down again. That means the underlying cause is still unaddressed.
For some this was yet undiagnosed bartonella or babesia, for some a viral infection and for others- gut issues.
Have you looked into herbal immune modulators? Something like Buhner? It may be a two step process to get his immune system back up in order to beat back the rest of the infectious load. that's really common with us.

I'm sorry you and your son are going through this
Posted 6/12/2020 1:23 PM (GMT 0)
It must be terrible to see your child's quality of life decline, and it's great that you are looking into ways to help him. This disease is particularly difficult because most doctors simply lack the education and experience to know how to help.

It sounds like your child needs significant changes to his medication as well as other supportive therapy. Have you been doing anything to support his gut health, healthy diet, immune system?

Antibiotics alone never fix this disease, unfortunately. It's good that he's had support with Cowden and glutathione as well, but with no improvement in a year, it's probably time to address co-infections, possible mold exposure, possible chronic viruses, and other issues. And perhaps find a different Lyme-literate doctor.
Posted 6/12/2020 2:42 PM (GMT 0)

saraeli said...

Antibiotics alone never fix this disease, unfortunately. It's good that he's had support with Cowden and glutathione as well, but with no improvement in a year, it's probably time to address co-infections, possible mold exposure, possible chronic viruses, and other issues. And perhaps find a different Lyme-literate doctor.

I second this
Posted 6/12/2020 9:00 PM (GMT 0)
Thanks,
We are speaking with the dr again.
These suggestions are great and we will definitely bring up the co-infection discussion.
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