Minocycline dosage/questions

[monarchcat]

DS12 has been on a few different abx since his PANDAS diagnosis 4 years ago (augmentin, azith, and now biaxin). A year ago we did blood work and found he had high Myco P titers (I don't know the exact numbers). At that point we switched from azith to biaxin (for other reasons as well - the azith just didn't seem to be working as well anymore). We just repeated blood work and his myco P numbers are still elevated (IgG >5 and IgM 1247). I am wondering about asking my doctor about minocycline since I've seen it mentioned that it can show good results with PANDAS and myco P in particular.

 

My specific questions are -

 

Should it be "regular" minocycline or minocycline ER (extended release)

 

If you've used it- what dose was prescribed (and what is the weight of your child). My son is about 100 lbs.

 

Any other experiences with it would be helpful!

 

 

[Mayzoo]

My kiddo was on it for about 3-4 months. She was around 50lbs, and took 50mg twice a day, then it got bumped to 75mg twice a day. It can stain teeth and they will need to be cleaned by a dentist. If your kiddo starts on it, check with their dentist to see if there is anything you can do to minimize the staining of their adult teeth.

[Dedee]

Those titers are about the same as what my daughter had. Are you seeing an LLMD? If not, I would suggest that you do. Minocycline was a very good drug for us. We did see some major herxing in the beginning so we backed off and started only once a day for the first 10 days then gave the second dose. My daughter is 70 pounds and she took 100mg twice daily and she was also on Cefdiner once daily. This was the best combo we have used and gave the best results. Our LLMD switched after about 6 months because she was worried about resistance. We have not seen as good results with the other antibiotics and I keep asking to go back. Minocycline crosses the blood brain barrier and that is why you see the herxing, but once you get past that it is very helpful.

 

Just want to reiterate that those titers are very significant and should be treated very aggressively. If your son is having neurologic symptoms they are most likely tied to Mycoplasma. Please do not underestimate the significance of these titers. I'm not sure that a regular (non-LLMD) will understand how Mycoplasma should be addressed. It took 2 years for my daughters IgM to get within the normal range and her IgG is still very high. The longer this goes untreated, the harder it can be to completely eradicate. Please keep us updated on your sons progress. Best of luck.

 

Dedee

[monarchcat]

Thanks for the info! We are not seeing an LLMD currently. We have seen Dr. B (and did IVIG w/ him 2 years ago w/ great success) but no longer have insurance that covers him. Our current pediatrician is learning about PANDAS and is very willing to work with us (also a Lyme believer). I know that's not an adequate substitution for a true LLMD but it may be all we can manage at the moment due to insurance/employment woes.