To those that take Tindamax

[LNN]

I am thinking of foregoing the tindamax this weekend - just too much OCD the last 2 weeks, we are going crazy. I guess I don't expect much to change since she hasn't had a dose since last Sun AM and the week was our worst in a very very long time.

 

That's what I assumed too, but I'm not sure anymore. On Monday two weeks ago (5/2), we stopped omnicef for 4 days. Re-started on Friday (5/6) but didn't do tindamax last weekend (5/6-5/8)(125 mg for 65lb, fri pm, Sat am/pm and Sun am). It wasn't until this Wed (5/11) (10 days after last tindamax and 5 days after our omnicef break) that I saw things definitely calming down.

 

The thinking on doing a weekend pulse is that you'll see herxing on Sat/Sun and maybe Mon/Tue then have a good rest of the week. But I think for my DS, it just wasn't clearing fast enough and we were in perpetual herx between omnicef and tinda. I think we'll stay off tindamax for a few weekends and let DS enjoy the end of school, then re-start in mid-June. When we re-start, I may ask about only doing two doses at start of week (Mon) so that we have a better shot at good family weekends for the summer. Then maybe add in additional doses based on reactions. I think I see that tindamax is certainly needed (DS has been on some sort of abx for 2+ yrs) so I'm sure there's lots of cyst form lyme in there. But the overload of toxins can't be good for the body and certainly isn't good for the rest of the family. So I'm leaning toward a slower course of treatment, trying to find that balance between aggressive enough to stay ahead of reproducing bacteria but gentle enough to stay married and being able to raise a mentally healthy family over the next upteen months of treatment.

[laure]

I am thinking of foregoing the tindamax this weekend - just too much OCD the last 2 weeks, we are going crazy. I guess I don't expect much to change since she hasn't had a dose since last Sun AM and the week was our worst in a very very long time.

 

That's what I assumed too, but I'm not sure anymore. On Monday two weeks ago (5/2), we stopped omnicef for 4 days. Re-started on Friday (5/6) but didn't do tindamax last weekend (5/6-5/8)(125 mg for 65lb, fri pm, Sat am/pm and Sun am). It wasn't until this Wed (5/11) (10 days after last tindamax and 5 days after our omnicef break) that I saw things definitely calming down.

 

The thinking on doing a weekend pulse is that you'll see herxing on Sat/Sun and maybe Mon/Tue then have a good rest of the week. But I think for my DS, it just wasn't clearing fast enough and we were in perpetual herx between omnicef and tinda. I think we'll stay off tindamax for a few weekends and let DS enjoy the end of school, then re-start in mid-June. When we re-start, I may ask about only doing two doses at start of week (Mon) so that we have a better shot at good family weekends for the summer. Then maybe add in additional doses based on reactions. I think I see that tindamax is certainly needed (DS has been on some sort of abx for 2+ yrs) so I'm sure there's lots of cyst form lyme in there. But the overload of toxins can't be good for the body and certainly isn't good for the rest of the family. So I'm leaning toward a slower course of treatment, trying to find that balance between aggressive enough to stay ahead of reproducing bacteria but gentle enough to stay married and being able to raise a mentally healthy family over the next upteen months of treatment.

 

Hey I hear 'ya! Need to stay married and keep siblings from throwing objects at her...Seriously though, I am not giving her tindamax this weekend and will see if things improve. The behaviors certainly cannot get much worse. She carried her backpack to the car in her teeth yesterday!! The contamination fears are getting the best of her to be sure!

[sf_mom]

I was prescribed 1500 m.g. per day of Tindamax originally.... I'm under 130 pounds. It was too much for me to handle and could not function. I was cut back to 1000 m.g. per day and can manage very well once the initial herx passes. They pulse my Tindamax 3 weeks on, 3 weeks off currently.

 

There are a couple of theories on how Tindamax is used throughout treatment. There is a Dr. in SF/Dr. in CO.... Dr. S/Dr. N that do not use Tindamax until the very end of treatment. Their position is to deal with all co-infections first. Dr. S is big into following CD57 (even for children) and C4As if present. He has written a lot about both. He feels the C4As are related to inflammation and if those markers are too high the Tindamax will make things much worse. He has stated that the LYME is fairly easy to treat in cyst form once all co-infections are gone. Dr. N believes similar. They essentially 'ZAP' the lyme towards the end. Based on these two perspectives, I think it would be perfectly fine to lighten the load of Tindamax and perhaps even waiting until the end of treatment. I of course would discuss any long term changes with your Dr.

 

Typically they treat with daily Tindamax and do not pulse at end. There is huge herx along with the wait. Again, very frightening for a parent but hopefully quick resolving in 8 to 12 weeks.

Edited May 14, 2011 by SF Mom

[laure]

I was prescribed 1500 m.g. per day of Tindamax originally.... I'm under 130 pounds. It was too much for me to handle and could not function. I was cut back to 1000 m.g. per day and can manage very well once the initial herx passes. They pulse my Tindamax 3 weeks on, 3 weeks off currently.

 

There are a couple of theories on how Tindamax is used throughout treatment. There is a Dr. in SF/Dr. in CO.... Dr. S/Dr. N that do not use Tindamax until the very end of treatment. Their position is to deal with all co-infections first. Dr. S is big into following CD57 (even for children) and C4As if present. He has written a lot about both. He feels the C4As are related to inflammation and if those markers are too high the Tindamax will make things much worse. He has stated that the LYME is fairly easy to treat in cyst form once all co-infections are gone. Dr. N believes similar. They essentially 'ZAP' the lyme towards the end. Based on these two perspectives, I think it would be perfectly fine to lighten the load of Tindamax and perhaps even waiting until the end of treatment. I of course would discuss any long term changes with your Dr.

 

Typically they treat with daily Tindamax and do not pulse at end. There is huge herx along with the wait. Again, very frightening for a parent but hopefully quick resolving in 8 to 12 weeks.

 

 

Thanks for that reinforcement! She's traveling with me this weekend and we are in hotel in Princeton, which, fortunately, has unlimited towels and hot water!

[kferricks]

ok, I am thinking that the tougher symptoms only last a short time while on the tindamax?