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Everything posted by cyberdog

  1. I had two questions about Tenex: 1. I experienced agitation on clonidine, and have heard that Tenex can do the same. Did anyone here have a *bad* experience with clonidine (in terms of more irritability etc.) but find that Tenex was tolerable? 2. How did it affect your sleep quality? A friend said his sleep quality was far worse on Tenex (no problem with sleep onset/duration), but I thought it was meant to help sleep.
  2. Thanks for the reply, LLM. I post on numerous boards and am wary of clogging them up with identical questions, so do my best to search the archives first. I read over one or two 23andme threads, but didn't have a concrete impression of how dramatic the improvements had been, which is why I posted. Your last sentence is a heady affirmation, so I will definitely put some thought into getting the test!
  3. hey y'all -- I've read 23andme might have some utility in helping those with more vague, treatment-resistant psychiatric symptoms, but I was wondering if it yielded anything that made a significant difference in anyone's life? I am a bit lost as far as methylation and the like goes -- I should be an 'undermethylator', but methyl-donors make me more agitated etc. and it would be nice to know how I metabolize certain drugs, including caffeine. But my psychiatric symptoms are so bad at the moment that I've been wondering if the information it yields will make much of a dent, or just mildly improve things. The reason I ask is because money is a bit tight at the moment, but I do have the opportunity to get the test as a birthday gift. Thanks!
  4. Thanks, I did search the archives before posting and saw that people did find it beneficial for OCD. But I couldn't find anything specific on whether anyone who had specifically reacted badly to other anti-histamines were alternatively okay on Quercetin.
  5. since Inositol is a sugar, are there any concerns re: hypoglycemia? I plan on trying it soon and suffer from reactive hypoglycemia so was wondering if I should be careful, particularly with the high doses suggested for OCD
  6. I'm interested in trying Quercetin for it's anti-histamine properties -- I thought it might help my OCD. I do tend to react paradoxically to synthetic anti-histamines, however (more irritable, angry) and I can't recall tell if it's histamine-mediated or maybe the anti-cholinergic properties of Doxylamine and Cyproheptadine. Did anyone here whose DS or DD react paradoxically to OTC antihistamines find that they were alternatively okay with Quercetin?
  7. thanks Ophelia. I ended up dropping it a few days ago ..
  8. I'm really sorry Ophelia22. That sounds awful; I had a similar experience where the police showed up here unexpectedly and it was pretty traumatic. I thought this was really insightful: I can relate .. I often cover up with doctors (to my own detriment) and blamed myself for being vain, but I realize a lot of it centers around dignity and trying to create a positive impression, which is just social instinct.
  9. thanks everyone. well, it's a bit hard since there aren't many reports on side-effects out there, but I did notice in one study for depression that certain patients began to experience "inner tension/unrest" at the higher dose of 200mg, but it was resolved when they reduced to 100mg. the restlessness has been the worst part for me, and was already there at just *25mg*, so I'm beginning to question if it will pass. I thought my sensitivity might not be an issue, since the drug is primarily prescribed to people with ALS. I could cut the pills into 1/8s and try just 12.5mg twice a day, which I'm thinking of doing, but it does seem ridiculously low.
  10. Sorry to hear that, NancyD. I did read your post about the incident, but I've never suffered from tics so wasn't sure how applicable it was. However she did feel more anxious while she was taking it? It's a pity .. my feeling is the side-effects won't subside and I was really counting on it working.
  11. Sorry to post about Riluzole here as well as in the OCD forum, but I noticed more Riluzole results in the Lyme forum, so thought I would try my luck. I've been taking Riluzole for about 4 weeks now: I began at 25mg and raised 25mg every week, and am currently on the standard dose of 50mg twice a day. However, in that time, I've been feeling more anxious, restless, irritable and am having trouble sleeping. I really don't want to give up, but it's been *impossible* finding any negative experiences with the drug, which has me a little perplexed. I've even emailed 4 researchers who oversaw trials in depression/anxiety conditions and none reported seeing the adverse side-effects I'm experiencing. They are, however, listed as uncommon/rare in the PI sheet. My doctor has no experience using the drug, so isn't much help. I plan to give it another week or so, but just wanted to know if anyone has heard of a patient growing more anxious/stimulated and if the effect was possibly transient? Thank you
  12. one week on 25mg and things are still bad. wondering if I should go even lower (12.5mg .. though that seems almost homeopathic) or raise to the standard dose (100mg) and just grit my teeth and try hold out. I find it strange my system would be having such trouble with a drug designed for ALS
  13. MWOCDS: I did have my histamine levels tested and they were high, so my doctor at the time concluded I was probably an undermethylator. But supplementing with methyl doctors (methylfolate and methyl-b12) just agitates me, so I gave up on that cause pretty quickly. Ophelia22: Thanks. Lamictal is pretty notorious for having a rough titration; I also know that you have to be really careful with Memantine because of the long half-life (70+ hours) and that it's necessary to dose at exactly the same time each day and go up in small increments. I've cut down to 25mg of Riluzole but am still reacting badly; since it's been 4 days, I don't want to go any lower and lose my progress but I do think I'll ask my GP for a prescription for a beta-blocker to see if that helps. I also ordered some Lemon Balm which hopefully might help take the edge off.
  14. Thanks for the quick reply guys! MWOCDS: It was Dr. Pittinger -- there are two studies by him on pubmed (one in adults, one in children) and he also prescribes the drug in his practice. I haven't spoken to Michael Grant, but will look him up. I suppose the drug isn't used very widely and I haven't come across anyone who took less than 100mg, so was feeling disheartened, but there are always exceptions I suppose. I'll back down to just 25mg tomorrow and take it more slowly. S&S, I was pretty big on a gluten-free diet for a few years. It might have made a difference (my digestion was at least better). I try to eat well, but to be honest, I feel so overwhelmed at the moment that I've been doing some comfort eating, which I try not to pressure myself about. It isn't a lot (I still avoid pastas etc.) but I have been having sourdough bread, rather than gluten free, and the occasional pizza. If I do ever get my depression/anxiety under control, I will look at improving my diet again. NAC didn't work for me, unfortunately -- I found it quite activating. I'm also relying on my earplugs too. I've started to realize that I might not be extremely sensitive per se, but that I'm just in the wrong environment (constantly noisy, chaotic) for an introverted 27-year old. I don't have any issues, for example, being in the city, with loud music, ambient noise etc. It's just yelling and barking I can't tolerate, which I think is normal. *sigh* my ultimate aim is to get out of here; I was pinning a lot of hope on the Riluzole (which is a fault of mine .. I'm a dreamer :/) c'est la vie..
  15. Hey, I noticed in the last thread I posted (about noise sensitivity) that people were interested in my Riluzole trial .. I actually started about a month ago and abandoned it after a week because I was feeling more anxious. Since I had just come off clonazepam, I thought the withdrawal might be interfering and wanted a clean slate. Unfortunately, I began again 2 days ago and am definitely feeling more activated on the standard dose of 100mg (50mg twice a day). I'm so distraught because this is pretty much the end-of-the-line for me and my GP has no experience using the drug, so can't advise me. I can't find any accounts of anyone using a lower dose, but I have a history of being extremely sensitive to medication, so am thinking about scaling back to 25mg once or twice a day and working my way up from there. I did contact the professor at Yale who oversaw some of the trials and he said he's never seen anyone grow *more* anxious on the drug. Does anyone know of any professionals who I might be able to contact for advice? Thanks so much!
  16. I realize noise sensitivity typically falls in line more with the autism spectrum, but I was curious if those whose family members suffered from OCD noticed an increase in their tolerability for noise once anxiety was treated. I was also curious if stimulants worsened the issue. I live in an unusually noisy household -- two younger brothers, two small dogs, lots of yelling. It's reached the point where I literally don't even bother trying to concentrate on anything, even TV, anymore. I used to have expensive noise-isolating headphones, which unfortunately broke, but spending your life in earphones isn't really a solution. I don't know where to turn anymore, if it isn't one thing, it's another -- I'm so sick of living like this. I start a Riluzole trial next week and pray it does something for me.
  17. Thanks MWOCDS .. I searched the archives and there are a couple of positive reports re: Riluzole. Unfortunately I'm not in the US, so wouldn't be able to enter any NIMH trials. What's worse is insurance doesn't cover medication at all here, so i'd be paying completely out-of-pocket. The cheapest source I could find was a UK generic for $350 a month. Lamictal is one of the few psych drugs I haven't been on. I've read mixed things regarding its efficacy in OCD -- it seems to either help or exacerbate symptoms. I'll speak to my doctor about it, though given the severity of my symptoms, I really need something potent. There are only a handful of studies on Riluzole, but they sound really promising.
  18. Has anyone here tried Riluzole for OCD? Have been on Memantine and NAC previously without success, so thinking of shelling out for this, despite its ridiculous cost ..
  19. My GP wouldn't prescribe Augmentin; he claims he doesn't like it, though wouldn't go into why. We settled on minocycline. Unfortunately, minocycline has a reputation for being potentially activating/agitating at first, though the effect supposedly only lasts for a week or so. I've been placed on Parnate for major depression which is anxiety-inducing itself; I'm hoping a higher dose will resolve the issue, but unfortunately I found the combination of Parnate and minocycline too much to bear. I became highly irritable and agitated. My plan is to wait until I've adjusted to Parnate -- if possible -- and then reintroduce minocycline at a later date, so unfortunately my trial is on hold for the time being. To MWOCDSON, the trial was enlisting recruits in 2012 and can be found by searching for OCD + minocycline on pubmed.com; I found a later paper which is inaccesible but referenced elsewhere stating that minocycline showed no improvements in OCD when added to an SSRI. I'm not sure if it's a reference to the earlier trial. However, several people have reported robust improvements in depression and cognition while on minocycline, which otherwise seems to be anxiety-neutral, so I suppose that's better than nothing. Maybe Augmentin would be a better option for OCD ..
  20. I pleaded with a family friend who's a GP that I have basically been incapacitated with treatment-resistant OCD for the past 9 years, and asked if he would trial me on an antibiotic based on information gleaned here. At first he was reluctant, but he called yesterday saying he would be willing to help me out. Unfortunately, I tend to get my hopes up extremely highly and it doesn't usually work out .. the last time was with Memantine, which turned out to be a bust. I was never tested for strep, but my OCD onset was age 19. However, I do suffer from certain immune-irregularities (IBS, chronic sinusitis). One peculiar symptom is that I've grown drastically more sensitive to medication over time, and cannot even tolerate supplements I am supposedly deficient in (Zinc, Vit D). Right now, I am torn between requesting Augmentin XR based on MomWithOCDSon's experiences and Minocycline. Both modulate glutamate. I am not aware of any formal trials on beta-lactam antibiotics in non-PANDAS OCD; however, a pilot trial is currently recruiting to test Minocycline in OCD. It also seems to be gaining valid traction as a measure for treating depression. Here is a list of properties I found that are unrelated to Minocycline's antibiotic mechanisms; I'm unaware whether Augmentin carries similar benefits: 1. Is neuroprotective. 2. Reduces brain inflammation 3. Reduces the number of glutamate receptors. 4. Demonstrates antidepressant properties in mouse models of depression. 5. Is reported to act synergistically with noradrenergic antidpressants to treat depression - desipramine (but not fluoxetine). 6. Is reported to act synergistically with NMDA antagonists. 7. Reduces glutamate excitotoxicity by reducing the formation of quinolic acid, a NMDA agonist. 8. Reduces mitochondrial release of cytochrome C. 9. Modulates several signalling pathways. 10. Reduces microglial activation. 11. Has been reported anecdotally to successively treat depression. 12. Reduces the expression of lipopolysaccharide-induced pro-inflammation cytokines, an effect that acts as an antidepressant in animal models.
  21. Have you been trialed on an antiobiotic, Ophelia?
  22. 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?
  23. Hi, I'm a 27-year old male from Melbourne, Australia who is seeking a GP familiar with a PANDAS/abx-protocol .. I realize I'm a little old, but my primary motivation is to try an antibiotic for severe, treatment-resistant OCD, and I'm having tremendous difficulty convincing general practitioners to try this approach. Thank you so much.
  24. 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?
  25. 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?
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