Minocycline for OCD (PANDAS/PANS)?

[kakrpa]

Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com

Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyone tried it for their OCD/PANS?

Treatment of anxiety disorders with minocycline:

http://www.google.com/patents/WO2008104734A1?cl=en

[dcmom]

We have used mino for pandas. One time it worked extremely well. Another time it had no effect. We are trying it for a month now to see if it helps current ocd issue.

 

While I have at times has thoughts of buying meds online somehow- I would not. Most importantly of course is safety, but beyond that the practical reason that you really have to work in partnership with your doc.

[Wombat140]

How long is it likely to take before you can get to see Dr T in person? If it's only a week or two, then I'd say wait; I've never actually tried buying prescription medication online myself, mind, but people here (police and so on) are always saying that it's not at all safe. (Though I suppose it changes things somewhat if you actually have the name of a site that another patient has tried and has been OK; but even then, remember they could just have been lucky). Also, as DCMom says, going behind your doctor's back like that isn't the done thing so probably not good for diplomatic relations.

 

I have to say I can't understand why, if Dr T's already decided to try minocycline, he won't actually give the prescription until you've seen him in person! If it's likely to be a while before you can see him, then maybe ring back and try and reason with them again and see if they can make an exception, given that doing it this way really doesn't appear to make any sense in the circumstances. Especially if it's due to him, not you, that it'll take a long time, i.e. because he's fully booked - it's not fair to insist on you seeing him and then say you'll have to wait because he can't fit you in!

[kakrpa]

Thank you both so much for your input...interesting thing is I went to my pharmacy on Sunday to pick up a rx for my husband and they had an rx ready for me as well. I asked what it was - I wasn't expecting anything, yet sure enough it was minocycline! Either his staff decided to call it in or he did it himself.

 

No idea why they said no in the first place and then changed their mind. I totally agree about ordering online not being ideal (for many reasons), but since he had indicated what should be prescribed it seemed worth looking into.

 

Started minocycline Sun night - will keep you posted (no noticeable effects just yet)!

[Cleopatra]

They did it because Dr. T's office is a hot mess. He's awesome but, disorganized. Absent-minded professor type. We've tried everything but minocycline and doxycycline. Dr. T prescribed Luvox for my daughters OCD and it works extremely well. But worked even better this year was plasmapheresis. Two rounds. IV IG stopped working I think.

[Cleopatra]

Also, clonazepam is great for general anxiety here and propranolol is amazing for fight or flight type, sensory reflexive anxiety.

[Ladymavs]

We just started a new abx for myco p in the last 30 days as the azith had run its course and others tried have little to no effect. We asked for minocycline as I had read that it had been studied to have effect on OCD. So far, we have not seen any significant improvement, but we will see if we see anything over the next 20-30 days.