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puzzledguy last won the day on February 15

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  1. Unfortunately the only one anywhere near me is Dr. Aureen Pinto-Wagner, and it seems she doesn't do anything with immunology or the other physiological aspects of PANS. I already have a psychologist and a psychiatrist in Durham, what I need is help with getting to the bottom of gut/food sensitivities. I will contact her anyway, in case she knows of any support groups for people with biomedical in addition to psychological issues, but I'm not too hopeful.
  2. I'm a student at Duke, living on my own. My parents have completely given up on my health and dropped out of the picture--I'm all alone and really need other flesh-and-blood faces to meet with and get support from. Just reading about research online is no substitute for actual friends who understand.
  3. New Blog!

    I've just started this blog. Feel free to follow it, and please pass it on to your adult children with PANS/PANDAS/Lyme! https://twiceapart.wordpress.com/
  4. Thanks very much MomWithOCDSon. It would be GREAT if the Duke medical center were able to address this--I'll be living within at most a 5-minute drive of the on-campus hospital, if I'm not within walking distance of it. Who there is helpful with getting assessed for these kind of health issues?
  5. Hello, I will be starting at Duke this fall as a graduate student. I'm in a bit of a crisis since it will be a long move (all the way from northern California) and I will be away from parents for the first time in a long time. I have chronic health problems, and I'm beginning to suspect I might have PANDAS. I know I had Lyme in the past, but I finished treatment for that. I am desperately looking for some sort of support from people in the Triangle area who I can meet with who understand chronic illnesses and can possibly help me get tested and treated, or at the very least just be supportive. My parents are very helpful with everything else, like getting moved in, finding therapists, etc., but unfortunately they are of zero help with anything to do with physical health problems. My mom put in countless hours during my Lyme treatment, but now she's 100% burned out on anything health-related and thinks that I'm imposing poor health on myself, that if I just relax more or do the right (psychological) therapy/medication it will all go away. I was THIS close to jut giving up on Duke entirely, and am still VERY tentative about the whole thing. However, since I am academically very talented, I don't want to give up the possibility to make something of my potential. I've already failed two programs due indirectly to my health problems, and I'm 31 now. I was hoping that there is someone on here whom I can talk to, either by email or phone, before I leave, so that I know when I get there I'm not alone. All the other people I've talked to in North Carolina, from office people at apartment complexes to staff at the university to mental health professionals, were super-friendly and helpful, like one therapist even offered to pick me up at the airport when I fly in (I couldn't believe that!). So I'm hoping there is a supportive environment somewhere around Durham/Raleigh for chronic health issues (including PANDAS) too.
  6. No, it's never triggered by anything external, always internal--drugs, sleep deprivation, prolonged anxiety, and sometimes just random chance. Thanks for the link, but trigeminal neuralgia doesn't sound like it at all. The pain never radiates to points on the surface of my head. In fact, in many ways calling it a "headache" is a misnomer, because it isn't like a typical headache (including the stress-type, pounding sort of headache). The closest thing my pre-Lyme self would have been able to compare it to is the achy stiff neck that sometimes accompanies a bad case of the flu. I've heard that many people with meningitis have a similar internal feeling in their neck, and know that Lyme can cause low-grade meningitis, but haven't heard that being connected with insomnia and the general sense of "overactive lower brain" (as opposed to mind or thinking/feeling brain) that I have. Seeing as too much caffeine has been a trigger, and now benzo withdrawal can make it a days-long phenomenon, I have to wonder whether it is some sort of sub-threshold seizure activity, or some kind of panic attack that manifests itself physically rather than emotionally. It definitely feels like an inflammation-related thing, though (and aspirin sometimes helps it, both the physical sensation and the psychological irritability/disquiet that goes along with it, and which is not a simple reaction to the sensation). I wouldn't be surprised if some of your people's kids who act out in bizarre ways aren't reacting to a similar restless, irritated brain sensation as I'm describing, just they could never put it into words.
  7. Hi, I have posted one other thread, about a particularly perplexing form of headache. Well, I wanted to elaborate more, and ask for other people's stories. For several years I have been having that strange headache, which involves a flulike sort of neck tension and a sort of electrical/"zappy" feeling in my head. Various things could bring it on, from too much caffeine to sleep deprivation to just a general flare-up in my symptoms. I was diagnosed with Lyme in 2002, and treated with about 6 years of antibiotics, but peripheral neuropathy and some nonspecific mood symptoms like irritability remained, along with the above-mentioned bizarre headache, which emerged around 2008 or so (i.e. *after* I had been off antibiotics for several years). These gradually got better with various supplements and mere time for the body to recover. On the other hand, about a month and a half ago I had a stressful experience with a therapist, with whom I didn't get along and who in some way suggested I was "crazy". I stopped seeing him, but until I had a chance to see a different therapist who reassured me, I was stressed out and had a week of insomnia. In that week, the headache also flared, to where it was rather a constant thing. Shortly before I resolved my emotional stress with the new therapist, I went on a benzodiazepine temporarily for sleep. The first night of taking this, despite taking a rather high dose, it took me a long time to fall asleep. Even when my emotional anxiety had dissipated, it felt like part of my brain, namely the area near the base of my brain/top of my spine from which the headaches seemed to be radiating, stubbornly refused to switch off, even as the rest of my brain was trying to sleep. Once resolving the psychological stress, which was ~2 days after starting the benzodiazepine, I tapered it to nothing over 2-3 more days. So, this was a very short course. A few days later, the insomnia/headache comes back, without a new emotional trigger. I eventually end up going on another benzodiazepine for about a week, then switching back to the first one because that didn't work. I was only on the full dose of each for three days, but I am having serious trouble quitting the benzo already. The problem is, every dose reduction causes this headache to return, triggering several days of insomnia, even though I have had period of 5 or more days of normal sleep in between. My doctor (who is not a psychiatrist, but a general practitioner with knowledge of mood disorders) has tried giving me other non-habit-forming medications to try and help me discontinue the benzo, but aside from some success with gabapentin, nothing helps better than OTC sleep aids, which still don't help much when in a "flare". I really feel, given my history with Lyme and the headaches, that it is counterproductive to treat this primarily as a mood disorder. I feel it much more likely to be a neurological disorder with mood manifestations, than a mood disorder with neurological manifestations. My mom (who I live with) seems in general to disagree, and given that I don't have a full-time job, I don't have the money to run around seeing neurologists. Plus, even if I did, I fear that they would not find anything wrong, that any damage to my nervous system is too subtle to be seen by tests. So I'm wondering, other people who were diagnosed with PANS (or Lyme) as adults, what was the biggest clue that what you had wasn't a "mere" psychiatric or mood disorder? What path did you have to take to get treatment beyond antidepressants/anxiety meds?
  8. I will only respond to this, for others who may be thinking of the same thing. While I respect your suggestion, I'm looking specifically if there are people who have had these kind of strange headaches, and whether they are typical for Lyme. Anyway, to respond to the quote, I am also at the high functioning end of the autism spectrum, and as with others in that position, I have had this I had as long as I can remember. However, until several years after I had developed "full blown" Lyme (which itself was when I was 16), I NEVER had this sort of headache, and even the peripheral neuropathy I only got at 16. All of the symptoms before Lyme were mood-related and social, not physical. So yes, I have a vulnerable system, but this particular manifestation is recent.
  9. I had Lyme disease for many years. While I was diagnosed in 2002, I had sporadic knee swelling as early as 1996. I was treated with 5+ years of antibiotics (yes, I managed to find a LLMD), and improved substantially, though I still had a ways to go. I quit the antibiotics, went on antifungals and probiotics for a while, and various supplements, which made me improve generally. Most persistent, however, have been neurological/brain symptoms. In particular, peripheral neuropathy, irritability, and possibly some depression. The neuropathy has improved (and continues to improve to this day--WOOHOO!) through a number of supplements, including NAC, probiotics, etc., and the general irritability and mood is improving along with it. However, there is this thing I am prone to, which sometimes really bothers me. Near the top of my spinal cord, there's this area that feels as though it sometimes can become inflamed and "stuck". It's like a stiff neck that is moved upward, but a nerve issue rather than a muscle one. Back when my Lyme was worse, I used to get these weird headaches which felt like "static shocks" emanating from this region. Now it's less frequent, and more of a "pinched nerve" or "pressure" feeling, sort of like the area is swelling. It's not constant, in fact for most of the average day I'm not aware of anything unusual there. However, once it gets started, certain things can amplify it. For instance caffeine--which I normally can tolerate very well, and which has a positive effect on my mood, except on days when this neck thing kicks in, not only are the positive effects of the caffeine reduced, but the neck gets worse. Similarly, sleep deprivation can cause flares of this symptom. Often, with the sensations come a more irritable and short-tempered mood as well. The things I have found to help it somewhat are supplements like NAC that reduce inflammatory stress, and sometimes NSAIDs, particularly aspirin, which can be miraculous as long as the symptoms aren't too bad. In fact, I have had the odd experience of taking an aspirin when feeling no physical pain, and having a sudden and dramatic easing of abstract emotional tension in my mind, that I didn't even know existed. This sounds eerily like what some of the people on the PANDAS board here say, which gave me the idea to post this in the first place. Also, alcohol "loosens" it (I'm in my 20s, after all, so I have experience with this). The worst is when I'm already sleep deprived (which thankfully is not often), and this keeps me from falling asleep. I've tried both OTC and prescription sleeping pills, and both (especially OTC) seem to paradoxically excite this "irritability center", or at least not touch it, keeping me from falling asleep even when the rest of me is calm. As I said, alcohol helps, but I can't mix that with other stuff and it's not healthy to need that. So has anyone here had a similar thing, and what made it go away for good?