For MomWithOCDSon

[cyberdog]

Hi -- for some reason, the board is saying you can't accept new PM's, so I thought I'd post this here. I hope you don't mind.

 

Hi MWOCDS,

I don't know if you remember me, but we corresponded briefly in a thread I started on Memantine. I've suffered from severe, treatment-resistant OCD for 9 years and you suggested I try a beta-lactam antiobiotic. Unfortunately, I was unable to convince my GP at the time, but am now pushing for a trial from another doctor, given that I have so few options left.

I was wondering if you could possibly forward on anything relevant research you have on the likes of Augmentin or Minocycline (unfortunately, d-cycloserine isn't available here, so isn't really an option).

Finally, I have grown tremendously more sensitive to medication over time, including supplements (such as Magnesium) which were previously beneficial, but which now only increase anxiety. I know you mentioned that your son -- and possibly others with PANDAS-like issues -- suffer from extreme medication sensitivities. Has the supplementation of an antibiotic assisted with things on that front, i.e. is your son able to more comfortably tolerate higher doses of ADs?

Thank you so much for your time.

Best regards,

David

[MomWithOCDSon]

David --

 

Don't know why I can't receive messages! This new board is nice but sometimes confusing!

 

I am more than happy to send you any/all research I have regarding beta-lactam abx and/or anything else that might be helpful to you. I don't believe I have anything . . . beyond anecdotal . . . specific to Augmentin or any of the other b-lactams, but I do have a couple of papers regarding b-lactams as a class and positive results with regard to glutamate modulation via implementation. I will need an email address, however, since I cannot, so far as I know, anyway, upload them anywhere here.

 

Can you tell me what "AD's" refers to? As for my DS's sensitivity to meds and/or supplements improving on the heels of his antibiotic therapy, I would say yes, generally. Though we have not increased his SSRI dosage in the years since he began abx, and that was the one he was most sensitive to. He does well with other supplements, however, such as NAC, antihistamines (like Pepcid), quercitin, B6 and zinc . . . no extraordinary sensitivities or negative impacts so far as we can tell.

 

This PANDAS/OCD thing is an ever-evolving and learning process. Your question also brings to my mind an idea that perhaps your intolerance for magnesium and/or other supplements might also have something to do with methylation and the relative health of your body's methylation cycle. It's possible that successful abx therapy assists in rebalancing this, and it's also possible that supplementing with certain elements and avoiding others help to balance it, as well. There's much about it I don't fully understand myself, but there's certainly a lot of information and research out there in this regard, some of which I can share. You can also search for "methylation" on the PANDAS forum and see a great deal of related information there.

 

In the meantime, if you can provide an email address (either here or successfully get a message through), I'll gladly send you what I have. Hang in there!

 

Nancy

[cyberdog]

Thank you so much MWOCDS! My email address is d.r.levinson@gmail.com

By ADs, I was referring to anti-depressants ..

 

P.S. Is there an index of PANDAS-friendly doctors listed here by country by any chance? I approached a third GP yesterday for an antibiotic trial, but was turned down for being a "hypochondriac" who "does too much research" . I'm in Melbourne, Australia, for what it's worth. Are any members here from Melbourne?

Edited May 14, 2013 by cyberdog

[MomWithOCDSon]

Thank you so much MWOCDS! My email address is d.r.levinson@gmail.com

 

By ADs, I was referring to anti-depressants ..

 

P.S. Is there an index of PANDAS-friendly doctors listed here by country by any chance? I approached a third GP yesterday for an antibiotic trial, but was turned down for being a "hypochondriac" who "does too much research" . I'm in Melbourne, Australia, for what it's worth. Are any members here from Melbourne?

 

Among the pinned threads on the PANDAS forum (as opposed to this OCD forum), there is a list of PANDAS-savvy andd/or -friendly docs who have helped many of our families. I don't think it's arranged by country necessarily because, unfortunately, there aren't that many around to choose from!

 

I know there are a couple of members of the PANDAS forum from Australia, so perhaps you should start a thread there, seeking other Aussie's with experience along these lines? Again, I'm not fully versed on this new and improved version of the forum, but perhaps there's a way to search members by place of origin? Ozimum is the only member I can distinctly recall who's from Australia.

 

Also, beyond a doctor on your side of the planet who might help, there's at least one here in the states . . . Dr. T. in New Jersey . . . who will do telephone consults and work with you via phone, mail, email, etc. That might be another avenue for you to try.

 

I'll get that research off to you today. I may send it in a few emails, and I'll probably send more than you will actually need. But at least it will give you some things to chose from.

[cyberdog]

Thanks so much, MOCDSON. I had a look through the list you mentioned, by unfortunately no Australian service providers are listed.

 

Do you know if Dr. T offers consultations with adults?

[MomWithOCDSon]

Thanks so much, MOCDSON. I had a look through the list you mentioned, by unfortunately no Australian service providers are listed.

 

Do you know if Dr. T offers consultations with adults?

 

I believe that he does, though he no doubt has fewer adult patients than he does kids. He has a fairly active web site and email access via that, so you might drop him a note and ask the question.

[cyberdog]

 

Thanks so much, MOCDSON. I had a look through the list you mentioned, by unfortunately no Australian service providers are listed.

 

Do you know if Dr. T offers consultations with adults?

 

I believe that he does, though he no doubt has fewer adult patients than he does kids. He has a fairly active web site and email access via that, so you might drop him a note and ask the question.

 

I did manage to find one clinic here that deals with autism, ADHD, PANDAS and OCD. They see adult patients and supposedly prescribe antibiotics when necessary. Unfortunately, there is a gauntlet of testing one must be submitted to first -- testing for strep, general bloodwork, gut content, fatty oil levels and so on -- which can be rather costly.

 

Do you think it sounds like something that might be of benefit, or should I try and push for an antiobiotic trial directly elsewhere?

[MomWithOCDSon]

To be honest with you, I think that, in reality, our anxiety-disorder related symptoms are the result of a mix of conditions/triggers. My DS's history seems to point to a genetic susceptability combined with the autoimmune trigger. And since all SORTS of things can contribute to both -- neurotransmitters in the gut and the brain, blood brain barrier permeability, methlyation (i.e., the body's innate ability to manufacturer/dispose of/utilize the substances it most needs, when it most needs it -- given the access, your best bet is probably to go ahead and do that testing and find out as best you can 1) what contributes to a greater degree for you, and 2) what best interventions have the greatest impact at the least cost (emotionally, physically and financially).

 

Even with abx, I sometimes get concerned that we're treating a "result" rather than the inherent issue. Does that make sense? I mean, his body "over-reacts" to strep, it seems, and abx seems to tamp down that outsized immune response, and it is potentially also helping modulate an excess of brain glutamate. But why? Why does he have excess brain glutamate to begin with? And if his body was in "better balance" in some respect, if his blood brain barrier filtered out those antibodies instead of letting them through, if his immune system responded appropriately and gave him a sore throat instead of raging OCD, if his neurotransmitter levels could be "leveled out" somehow in a more lasting way, rather than tamped down with meds or supplements, wouldn't that be the healthier route, in the long run?

 

There's so much stuff/ideas/research floating around these days about inflammation, BBB health with Vit D and omegas, histamine in the gut and the brain, glutamate modulation, etc., it's really hard to figure out if you're just slapping a band-aid on a situation that, if you had the means and opportunity to dig deeper, you might not be able to come up with the deeper, lasting "answer" and treatment. In my gut, I feel like the methylation cycle might ultimately provide those answers, and this might be part of what this clinic you've found is delving into, given the scope of its treatment group, i.e., what do each of ADHD, PANDAS, OCD and autism potentially have in common?

 

But there's a daily life/practical side of this issue, too, isn't there. You want to be functional, you want to feel better. And if an abx prescription could get you "more so" in that respect, even if it didn't get you all the way to where you ultimately want to wind up, that would probably still be very valuable to you, no? I guess, in your shoes, I would consider running parallel tracks, especially given the hard road you've had thus far even finding anyone who will prescribe an abx trial for you. I think I would continue to pursue the abx avenue, particularly with doctors with whom you have a history and a good, respectful relationship. And then I would also look into what line of testing and inquiry I could minimally pursue with this other practice, and maybe get the ball rolling . . . if only slowly . . . there, as well. If, in the meantime, you can try some abx and you find they have a good impact for you, then you might have part of your answer and you might feel like you can drop the other avenue, or take it at a more manageable, affordable pace.

 

Sorry if that's not much of an answer; I'm sort of going with a "train of thought" response process here. Ultimately, I would really LOVE to take my DS somewhere where he could be given this testing, have some more distinct identification of what underlying pieces contribute to his health and behaviors, and then hopefully come up with -- again -- the least invasive, longest lasting, healthiest treatment route for him. But unlike you (and me), he doesn't currently have the curiousity or the investment in finding that "lasting solution." He feels pretty good right now, and he has a teenaged life to pursue. So spending his time and energy in doctor's offices or being poked and prodded isn't high on his To-Do list at present.

 

Whichever way you decide to go, I'm cheering you on and will be interested to hear the outcome!

[Guest]

I'm an adult and seeing Dr. T, well only by phone. I have very very severe ocd as well and nothing has helped working with psychiatrists over the years. However, I can't ever seem to reach his office and nothing ever gets done, no return emails, calls, etc. etc.

 

Just wanted to mention that I too have very very extreme sensitivity to medication.......so bizarre.

[cyberdog]

Have you been trialed on an antiobiotic, Ophelia?

[Guest]

Yes I did 3 different antibiotics for 8 months and had to quit after that but I didn't see any improvements. I recently did an anti-viral for 3 months but had to quit again due to very severe side effects, no improvement again! I hope we are moving towards auto-immune treatment next b/c I've never tried anything like it!