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When to stop treatment for my kids?

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Lyme Disease
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Posted 4/27/2016 7:12 PM (GMT 0)
My kids ages 8 and 11 who both tested positive for Lyme but were mostly asymptomatic are in month 8 of the Cowden protocol. Aside from being small (because they are picky eaters) they don't have much going on in they way of symptoms...they really didn't even when they were diagnosed. I had them tested because I believe I passed it to them.

They've not been under the constant care of our LLMD simply to cut down on expenses, so they haven't seen the doctor since they started treatment because things have been uneventful. I didn't want to shell out a bunch of money to go to the Dr. just to discuss how they are asymptomatic. Do you think it is wise to stop the herb and just watch what happens?

Also, any have an experience with the ispot lyme test? Just wondering if that might be a better indicator of whether they are still fighting the infection.

Thanks!
Posted 4/27/2016 7:41 PM (GMT 0)
Ok, I am in the same boat. 3 kids, primarily asymptomatic. We did a month of abx, 2 weeks of Tinidazole, and Buhner herbs (plan to do for awhile). I am doing the iSpot test myself on Monday, and based on what I see from that I was thinking of testing the kids too. Did you see that it was talked about during the recent Chronic Lyme Summit? It seems promising and can give clues to coinfection, etc. The test is $400, so not cheap.

Can I ask you how the kids did on Cowden? How did you dose them with school? Is the taste ok? I was thinking of going that route for the kids instead of Buhner herbs. I like that Cowden has the metal detox portion since that is an issue for us. My kids are 8, 10 and 12.
Posted 4/28/2016 2:53 AM (GMT 0)
Yes how did they do on their protocols I have set up appt for 3 of my 4 kids tests have come back with some bands and they have had some symptoms and are set to see llmd in July so we will have to decide what we want to treat with. And so weird but our 4 kids are between 8 an 12.
Posted 4/28/2016 11:29 AM (GMT 0)
Buhner writes of an 8-12 month treatment time for Lyme.

Noted LLMD Dr. Klinghardt writes of 18 month Lyme treatment being necessary to cover all possible life cycles.

Not much help but some numbers I've read...

k07 - you can use Cowden's metal detox tincture when following Buhner.... Or, you could use another company's cilantro/chlorella tincture.
Posted 4/28/2016 12:03 PM (GMT 0)
I did use the sealantro for a bit. I switched to just putting Amazing Grass green powder in their daily smoothie. I think Cowden's would be easy for kids because it is a set schedule. I have never tried his main tinctures and wondered if they had a taste?

It's hard to know when to stop with asymptomatic kids. Usually, LLMD's treat 3 months past having no symptoms. I would almost consider staying on 2 or 3 of the main herbs as a maintenance for a bit. Did your kids herx at all on the program? My kids have not had any herx with the abx or herbs. Or if they did, it was really mild.
Posted 4/28/2016 1:48 PM (GMT 0)
If my kids can handle the Cowden Herbs - anyone can! They are really not bad at all. Expensive but not bad tasting. I use small mason jars (as they have to be mixed in glass) and set out all the dosings for the day. The boys take a little padded pouch with their jar of herbs to school with them and have watches that beep 30 minutes prior to lunch. The worst tasting herb is the sealantro but they do it with no problem.

Never had any herxing with my kids that I am aware of. Every so often I'll notice my son looks uncomfortable when he wakes up like his foot hurts but he doesn't complain. And they can be moody and argue with one another but they are brothers so I can't tell if that is just how they are.

I like your idea of keeping on a few of the main herbs for maintenance. I think I have been rigid in my thinking that 9 months was a magic number when in my own case, I flared at the 9 month mark after some life stress.

I would be interested in hearing your experience with the ispot lyme test; yes, I learned of it on the Chronic Lyme Summit. Seems like it would be a useful tool to gauge whether further treatment was necessary.

I don't know how others feel, but I struggle to keep reminding myself that I am blessed to have asymptomatic kids as I find myself drifting towards the "what if" scenarios. But at least I have test results for them and know what we are facing so that if/when symptoms arise, we know what we are dealing with. (I'm preaching to myself now!)
Posted 4/28/2016 2:08 PM (GMT 0)
I know, I have to remind myself how lucky I am too. At least we armed with information "if" it would happen to get worse.

Since I am not familiar with Cowden, let me know if you end up picking a few maintenance herbs. Would be curious which ones you choose.

Did you have to get approval through school to take the herbs? My son is in middle school now, so it would be hard for him to take the herbs. I guess I would just figure out how to make it work. I wish there was a way to dose only with bfast and dinner.

I will post on here when I get the iSpot results. I think it is fairly quick - like 4-5 days.
Posted 4/28/2016 2:32 PM (GMT 0)
My son is also in middle school. As herbs are not prescribed, I simply told his teachers and administrators and they didn't require any formal documentation or procedures. He just keeps it in his locker and brings it with him to his class before lunch.

Will let you know what I find out in terms of maintenance herbs.

Good to know we are not alone!
Posted 5/5/2016 6:00 PM (GMT 0)
I went for my iSpot test on Monday (drove 45 minutes) and was told they called Pharmesan Lab and they aren't accepting blood samples right now. I am skeptical of this and think my doc just didn't want me to do the test. They prefer ELISpot in Germany. I declined the ELISpot and drove the 45 min back home. Please post about iSpot results. It really sounds like a promising test.
Posted 5/13/2016 3:48 PM (GMT 0)
Ok, so I guess my doctor's office was telling the truth!
Posted 6/17/2016 5:22 PM (GMT 0)
Sorry, i just saw this after my last posting asking you for info on test. I really want to have it done-seems very helpful.
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