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If Dr Latimer is near you, then try to get in with her. If it will take awhile to get in, maybe ask her what tests your pediatrician can run until u meet with Dr L? AFAIK, the things I listed out can be run via a serum blood test (I went to a lab in town, with approval from Dr T).

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

I agree with the other responses on here that yes, this is highly suspect of PANDAS. Especially if this is kind of coming out of 'nowhere'. What kind of antibiotic was she put on? What kind of tests were run? IMHO it is hugely important to test not only for strep but other potential triggers as well (mycoplasma, coxsackie, EBV, etc.) so a bit more bloodwork is in order. Keep us posted!

James_d how are you doing? What abx did you end up taking and/or are you still taking them? Curious to hear how they're working for you. I'm wanting to try minocycline next - if you google minocycline and OCD there's some very recent research that suggests its potential role not only as an abx but also as a glutamate modulator! Keep us posted!

So what all did you find out from your DS labs? Any change in treatment?

I'm so sorry to hear this - how about a low dose abx until you get ramped up on alternative methods and see what works? So sad to hear of her suffering like this. I can understand it completely - I too have severe anxiety/pure OCD (intrusive thoughts) that can make life insufferable. Out of curiosity, what kind of abx has she been on that seemed to help her? There's recent research that suggests minocycline may be a good abx to try for those also suffering OCD as it somewhat helps modulate glutamate. Keep us posted!

I have severe anxiety/OCD and azith seems to make me feel worse - i never seem to make myself take it beyond a few days. It just gets to bad I get scared to keep taking it. I'm considering minocycline as it's not only an antibiotic but also glutamate modulator (not sure on the exact science behind it). Some report it helping with OCD. Anyone used minocycline??

@missionmama and @cyberdog I'd like to know more about this too!

See if you can get in for an initial consult with Dr. Trifiletti. Get some bloodwork done (check for mycoplasma, coxsackie, HHV6, EBV, etc). Keep us posted!

Have you tried minocycline? Some research indicates this has been shown to help OCD in some individuals. Research Washington Post, OCD, minocycline to read the latest article. I'd actually like to try minocycline next.

I strongly suspect myco p (mycoplasma) is a trigger... believe Dr. T has written about that being a potential trigger as well.

Thank you MyLighthouse! Good to hear what you're trying - did it seem any of those ABX worked better than others? Have u retested myco numbers to see if/how much they've gone down? Appreciate ur input!

Good points James_d! I am not sure what ABX to try next, maybe doxycycline. Feels like such a guessing game. As for igenex, IMHO, I would skip the testing as it sounds like you're paying a pretty penny only to be left with doubt. Unless they have a % reliable factor regarding their tests? How common are false positives? That would definitely weigh into the decision here...surely there are others here that can better speak to this test.

James_d glad to hear you're working with a good naturopath...keep us posted on ur progress! I have not had igenex testing done - is that for lyme? I've tried only two diff but fairly common antibiotics - I didn't notice any improvement even sometimes felt worse (maybe due to change in gut microbes?).

Is there a typical best antibiotic for treating myco pneumoniae? I have been on only the fairly common ABX before (zpack, etc) and noticed no change (except typically a worsening of symptoms - likely due to changes in gut bacteria?). Would appreciate any input!

Also, worked with Dr T about a year ago and various testing showed high (latent) titers for mycoplasma pneumoniae, Coxsackie A and B, EBV, HHV6 (no strep). I think the biggest concern from Dr T was the high mycoplasma and coxsackie numbers. He also noted my genetic profile showed striking similarity for a predisposition towards PANDAS/PANS.

My situation is very similar to James_d. Im an adult with severe OCD. I had no mental health concerns at all until a fairly abrupt OCD onset at age 23. I'm still baffled by it - I'm 37 now (would anyone 14 years ago have suspected to test me for various infections prior to this onset? Surely not).

basilbeth, I understand how confusing this all is...I deal w severe anxiety / OCD yet do well on caffeine (pop/coffee), chocolate, etc too. Momwithocdson, I'd appreciate anything u have on this topic as well, if u don't mind.

Hey Mike, keep us posted on your progress - what abx did you start? My symptoms/situation sounds very similar to yours - high myco p titers (along with high coxsackie a and b, EVB, etc.). No strep titers. I've tried short courses of abx in the past but didn't tend to see improvement - typically my anxiety/OCD gets worse! :-/ Curious to see what you were rx'd and how you get along with it...thank you!

This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap

Sorry to hear you're suffering....I have severe anxiety / OCD too. It's severe enough that I'm on several rx's, one of which is Xanax, which has been a life saver. I can at least now function enough to get to the bottom of what's going on with me. Hope this helps you - please don't be afraid to get psych help, at least in the interim. There's such a stigma that I was afraid to do so, but it ended up being one of the best decisions I could have made. Take care!

Btw, organic hemp oil (look up Nutiva brand) seems to help my anxiety/depression in a way I've never experienced with fish oil supplements. Fyi.

Interesting! I never seem to tolerate fish oil supplements well either - seems to exacerbate anxiety/depression. This has always baffled me since it's posted everywhere about how good it is for you. Will b interested to read others comments... Btw, I don't think it's related specifically to fish, more so likely to DHA:EPA (will research the potential carnitine connection u wrote about - very curious about this).

Very happy for you and your son! Thank you also for coming back to provide an update! Mind if I ask what natural anti inflammatory and probiotics u used? Have high myco titers here along w coxsackie a & b. Also, did u try a gluten free diet by chance?

I don't think you're creating a problem by getting medical consultation for your son. Even if other people think so, is that going to stop u from taking action out of concern for your son? No. Take action. It's surely easy for me to say this, but try not to overthink the timing relative to your DD. You don't know for sure what's even going on yet, and even if it's related, please try to compartmentalize so as not to overwhelm yourself...again, easy for me to say. Saying prayers for you and sending virtual hugs!! Please keep us posted.