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need help from Lyme veterans...


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Hi all-

 

So frustrated with meds here. DS has tried so many different things since he also has PANDAS--frequent strep and myco plasma infections. A new band recently showed up on th WB and he has been taking minocycline for about 10 months. One MD suggested tindamax, another suggested plaquinil. Anyone have experience with either of these? I am inclined to go with the plaquinil since I don't like what a trusted MD told me about tindamax.

 

Any help will be much appreciated!

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I'm confused about the recommendations you were given. Tindamax is a cyst-busting antibiotic that is often pulsed along with other antibiotics. We used it during treatment for Babesia last year. 21 days of Azithromycin + Mepron. Then the last 7 days of the month we would stop Azith/Mepron and do Tindamax for a week.

 

Praquenil is an anti-malarial. We are also using it to treat Babesia.

 

Do you know if you are treating parasites?

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Not sure. I don't think there are any co-inifections other than the usual suspects for us--Myco plasma and strep. He is on: Clindamycin, augmentin,minocycline, lamicil and a pro-biotic. Very high ASO for him 800. I think his symptoms are more Limey though.. Dr was reluctant to add another antibiotic understandably .

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Second MDmom - these are generally used for different infections. Babesia is a red blood cell infection and you use anti-malarials as I understand it. Tindamax and Flagyl are extra-cellular abx used for cyst-busting lyme that has curled up and made itself an outer shell generally impervious to other abx. You pulse tindamax, generally on the weekends or maybe for a full week followed by a week or more off of it. I've never heard of anyone staying on tindamax on a daily basis.

 

Going to add tindamax back into our routine in a month or so. We did it 18 months ago and had to back off because of severe herx. This time, we will start slower and see what happens. When we started tindamax, I freaked - some scary issues about cancer risks. But I also found research that said this risk was not universal - the studies showing issues looked at a specific population. I'll try to find it again. I ended up concluding we were ok taking it for a limited time.

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Second MDmom - these are generally used for different infections. Babesia is a red blood cell infection and you use anti-malarials as I understand it. Tindamax and Flagyl are extra-cellular abx used for cyst-busting lyme that has curled up and made itself an outer shell generally impervious to other abx. You pulse tindamax, generally on the weekends or maybe for a full week followed by a week or more off of it. I've never heard of anyone staying on tindamax on a daily basis.

 

Going to add tindamax back into our routine in a month or so. We did it 18 months ago and had to back off because of severe herx. This time, we will start slower and see what happens. When we started tindamax, I freaked - some scary issues about cancer risks. But I also found research that said this risk was not universal - the studies showing issues looked at a specific population. I'll try to find it again. I ended up concluding we were ok taking it for a limited time.

Thank you! Still waiting to hear from LLMD. The LLMD NEVER has discussed detox with us.

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