Forum Community Guidelines
Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.
Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.
Announcements, media requests, and research requests
These need administrative approval. Please send to an administrator before posting.
Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:
You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.
When a guideline is violated
If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.
Updated March 19, 2010
The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.
Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.
Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.
Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.
Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.
When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.
Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.
You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.
Except for authorized legal investigations, we will not share any information we receive with any outside parties.
Updated March 19, 2010
puzzledguy posted a topic in PANS / PANDAS (Lyme included)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.
puzzledguy replied to puzzledguy's topic in PANS / PANDAS (Lyme included)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?
puzzledguy posted a topic in PANS / PANDAS (Lyme included)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.
puzzledguy replied to puzzledguy's topic in PANS / PANDAS (Lyme included)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.
puzzledguy posted a topic in PANS / PANDAS (Lyme included)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?
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.
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?