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dreamingpanda

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  1. Have any of you heard about the Coimbra protocol for MS and other autoimmune diseases? I'm considering trying it for PANS. https://www.coimbraprotocol.com Basically, it's extremely high doses of daily vitamin D: ~50,000 IU or more, along with some other supplements and close monitoring by a doctor. The premise is that people with autoimmune disease cannot properly absorb and make use of Vitamin D, so they need mega doses just for their bodies to be able to do what healthy people's do with more "reasonable" amounts of Vitamin D. Apparently Vitamin D boosts the immune system while suppressing autoimmunity--exactly what we PANS people need! My PANS doc was talking about moving on to Rituxan, but my LLMD says that's a bad idea with Bartonella still present. I've done multiple rounds of IVIG which haven't cured me, so that's off the table. My Lyme/co antibiotics kicked up the inflammation so much that I had a full-blown PANS relapse and have had to do weekly steroid infusions--which are only a band-aid. Basically, Vitamin D seems to be my best option at this point while I continue to treat Lyme/co. Unlike Rituxan, Vitamin D is supposed to boost the immune system and probably help me fight off the infections while knocking down the autoimmunity. I've never heard of anyone doing this protocol for PANS, but it's supposed to have 95% success rate for putting people with MS into remission (another neurological autoimmune disease). I'm always skeptical of anything that claims as much, but Dr. Coimbra isn't trying to sell anyone anything, and he lets other doctors come train with him free-of charge. I'm reassured that it doesn't seem like he's trying to take advantage of anyone. And there are thousands of people around the world who have had success with this for MS, RA, Crohn's, Sjogren's, and other autoimmune diseases. What do you think? Have you heard of this protocol before? Would you try it?
  2. Recovery Time

    I agree that everyone is different. So much depends on how old a person is, how severe, how long it's been untreated, and what kind of treatment they get. And sometimes, there seems to be no rhyme or reason to how fast or slow one person recovers. In my experience, I was untreated for eight years, had my first IVIG at 19, and after another IVIG and a tonsillectomy, I'd say I made a full recovery over a year later. I've since relapsed twice, but that's because I caught Lyme disease, which complicates things a great deal. From what I've observed in my own journey, it's very hard to give an accurate percentage of recovery, or to figure out when I've gotten all the way back to myself. I don't know if I've ever been 100% symptom-free since I became ill eleven years ago. I've stopped trying to assign a number to where I am in recovery, and I just gauge whether or not I'm able to live my life as I wish. Ultimately, I think that's the best a lot of us can do. For me, there's never been a day or even a month when I've suddenly realized everything was back to how it was before. It usually seems to be a painfully slow process where I shed symptoms and regain my "self" so slowly that I might not even realize it's happening. It's easy to over-analyze ever day, every tic, and every little compulsion, but the overall trajectory is what's most important. There will be ups and downs and flares for pretty much everyone, but hopefully, the underlying trend is towards the positive. At my age and given how long this went untreated, it's possible I'll always have some minor symptoms. But even if this is so, thanks to treatment, PANS hasn't stopped me from doing anything I've wanted to accomplish in my life. So hang in there! You might be in this for the long haul, and there may be a lot of ups and downs, but yes, your daughter can and will get better with the right treatment.
  3. I've been doing 9 weeks of 1g of IV Solumedral once a week, and it's been miraculous. (I'm 22, eleven years of PANS, diagnosed at 19.) I'd relapsed in August or September, I was completely dysfunctional, suicidal, unable to do any school, and just generally a different, totally tormented person. After three steroid treatments (3 weeks), I was back to baseline. I've had Lyme and co-infections for almost two years, and this PANS relapse was probably caused by the antibiotics kicking up the inflammation in my body too much. (It's very unusual to use steroids when someone has Lyme, but my LLMD thought mine was one of the few cases when it was warranted.) My PANS doc said that the steroids definitely weren't fixing the underlying problem for me, so your instincts about that may be right. I've heard of some people who did heal after a few weeks or months of IV steroids and then that was it (especially in someone who is younger and hasn't had PANS for years like I have). But sometimes, I think steroids are just used to alleviate suffering and buy time until you can get more curative treatments. It's definitely important to figure out whether or not there is still an underlying infection. Does your DD still have tonsils/adenoids? Strep can hide in there even on antibiotics. Have you considered testing for Lyme and co-infections with Igenex? I wish I'd done Igenex much sooner. I've never tested positive for Strep in all eleven years of my journey, so it's definitely not the only thing to look out for. As far as tics, for me, the steroids often make them worse for the first day or two, but then after that, they're better than they were before the dose. I've heard of a lot of people whose tics are worsened by steroids, though, so it's not unusual. I think it can take a little time for them to knock down the inflammation, so don't give up on it yet!
  4. Relapse or Rifampin Herx? What to do?

    Thanks so much for the encouragement! I don't know if my pdoc is a herx non-believer, though he's the first one to admit that the intricacies of treating late-stage Lyme are out of his wheelhouse. He's very against SSRI's for me, as they've always made me worse, but both he and my LLMD agree about increasing my Lamictal. I guess I'm just getting discouraged, because I'm nine months into Lyme treatment and was so much better a few weeks ago--maybe even the best ever, and it lasted most of the summer. But in the last month, I've suddenly gotten worse and worse and am barely functioning by this point. Is this normal? Usually my herxes last at most a few days, are lessened with detoxing, and then I'm better than before I herxed. I'm not taking any antibiotics this week, but I'm still continuing to go downhill. Could someone have a month-long herx? Or is the bacteria coming back? I've not been having the flu-like symptoms, joint pain, and fatigue I normally get in my herxes. It's all just these debilitating psychiatric and neurological problems.
  5. Hi everyone, Have any of you had a dramatic regression/increase in symptoms from starting Rifampin? To give context, I’m 22 and had untreated PANS for eight years. I got diagnosed at 19 in 2014, had two IVIG’s, a tonsillectomy, a year of steroids, and I went into complete remission by the end of 2015. I got Lyme in 2016 and relapsed, and I’ve since had another IVIG and have been treating Lyme and co-infections with an LLMD. I didn’t start Lyme treatment until December—nine months after the initial infection. I also tested positive for Babesia and Relapsing Fever. I was doing really well this summer and was definitely getting much better, but in the last few weeks, I’ve gone downhill fast. When I started Rifampin two weeks ago (in a MWF pulse dosing), it dramatically accelerated my decline. I still have an occasional, pretty-good day, but most of the time, I’m so depressed I can barely take care of myself. My word-finding issues have returned, and I speak nonsense frequently. The atonic seizures (one of my most severe PANS symptoms since 2014) have come back, too. I feel confused and disoriented often, with periods of time when I feel dissociated and really far away from everything around me. I’m having all of the symptoms that I get when all breaks loose with a full-blown PANS exacerbation/relapse. Yet my parents claim I don’t have the same “look” as when I’m really at rock bottom. My LLMD thinks I’m herxing, but my psychiatrist thinks it sounds more like PANS (purely autoimmune) and that Rifampin is making my psych drugs (Wellbutrin, Lamictal, and Seroquel) less effective. My LLMD did warn that this new Lyme protocol could make my mood symptoms worse, but why so many other symptoms? So far, my other herxes have never lasted as long as this, so I’m afraid this is an autoimmune thing again. I'm detoxing with Burbur and Alka-Seltzer Gold, but any reduction in symptoms never lasts long. Has anyone else had a similar experience with Lyme treatment, and especially Rifampin? If so, what do you do to make this better? I’m so tempted to do a Prednisone burst, because that’s almost always made PANS symptoms go away, but I know that’s a bad idea with an active infection. But how am I supposed to keep living like this?
  6. Severe stuttering

    Wow, this is definitely among the most frustrating symptoms to deal with. Sorry your DD is having these difficulties. I'm 22, diagnosed at 19, and I've never exactly stuttered, but speech difficulties have been a symptom that comes and goes. Sometimes, I start saying gibberish syllables. Other times, I just don't remember words and take long pauses in the middle of a sentence while I try to remember. I also have a few nonsensical words and phrases that tend to come out when I can't remember what to say (for a while, I called everything a "butt," which led to some interesting exchanges with strangers...). I almost always know what I'm trying to convey in my mind, but I'm unable to say the words. I've always thought of these issues as part of my PANS/Lyme, and they tend to come and go with my other symptoms. Hopefully they will resolve for your daughter soon, too.
  7. Hi Rhnv, I'm sorry to hear that your daughter is having all these symptoms. I've had PANS for about ten years, undiagnosed until 2014, and Lyme at least since April 2016. I've had three high-dose IVIG treatments since August 2014, and it was a different experience each time. I've also done eight low-dose treatments for an immune deficiency. Is she doing low or high dose? The first two times I had high-dose IVIG (7 months apart after I relapsed severely), I had a post-IVIG flare about two weeks later, when all of my symptoms were terrible, and possibly worse than before treatment. I did Prednisone bursts to get through the flares, and then I slowly improved over several months. Recovery has never been linear--if I got rid of one symptom, another one would crop up. It often felt like I wasn't getting better, but I was, though very, very slowly. My second IVIG combined with tonsillectomy put me into remission for several months, and yes, it started with a regression. I think I would've stayed in remission if I hadn't caught Lyme a year later. Basically, in my experience, the IVIG healing process can be extremely slow and unpredictable, and it's a two steps forward one step back kind of thing--and sometimes it's one step forward two steps back. Six weeks might be a bit too soon to tell much of anything yet. Hang in there!
  8. Hi Peridot, I’m 22, and I’m in a similar boat. I have PANS, Lyme, Babesia, and Tick-Borne Relapsing Fever. My anorexia came on suddenly, a few days before I had the first flu-like symptoms of Lyme disease last April. I ended up losing 20 lbs in four months from my ed (and I was almost underweight to begin with), and I’m pretty sure the only reason I wasn’t hospitalized was because my psychiatrist knew I was about to get IVIG when he found out what I was doing (thankfully he’s PANS-friendly). It’s like you say, though—I don’t think anyone really knows what to do about my eating disorder. I saw a nutritionist for months and tried therapy for a while, but it didn’t help. I regained the weight, but I still have so many food rituals and fears, and now I’ve been in a binge-restrict cycle for almost six months. I'm so sorry your daughter is dealing with these two awful things! Either one alone is so much to handle, and together, it's really tough. I hope she finds some relief soon. If you’d like to connect more, feel free to PM me.
  9. Hi July, 40 mg seems like it could be a bit low for a burst for a 16 y/o. When I did my first steroid burst, it was 50 mg for five days, and I weighed 99 lbs. I’ve also done steroid tapers, and those usually started at 60 mg. Every one is different, though. That first time I did a five-day burst, I saw improvement on the third day. I’ve had other flares when it took a few days, and still others when I improved within a day on steroids. There have also been a few when the steroids didn’t help at all, but that was when I had infections that I didn’t know about. If there’s an active infection, it’s entirely possible that the steroids will either not work, or they’ll make him worse. Have you looked into Lyme disease through Igenex testing yet? It’s so important to treat Lyme if it’s there—otherwise, a lot of the PANS treatments won’t have their full effect. Does he still have his tonsils/adenoids? Infections can hide there, too, and antibiotics won’t reach them.
  10. Cognitive effects of PANDAS

    Everyone is different, but for me, it was about a year and-a-half after my first IVIG and six months after T&A that I really felt like myself again and didn't notice any significant cognitive difficulties. I relapsed last year, and everything came back, but I'm doing much better now. My cognitive improvements following IVIG were like night and day. Whenever I flare now, the cognitive problems return, but a steroid burst pretty much always takes care of them. I still can't remember or recognize faces very well and have trouble telling new people apart, so I might be getting some kind of occupational therapy for this. Not sure yet. But almost certainly not more IVIG just for this one issue. Unfortunately, I also still have a great deal of anxiety that makes school difficult. I'm so used to having trouble concentrating and understanding assignments, that I'm always anxious about starting any homework because it used to be so dreadful, so it all still takes me a long time, but not because of any real cognitive problems--I just anticipate them even though they're not there anymore. I'm sure there's inflammation exacerbating my anxiety, but it also feels like I truly do have purely psychological fallout from ten years of PANS, too. I think it's important to distinguish this sort of PTSD-like anxiety versus cognitive symptoms because you'll treat them very different ways.
  11. Hello, has anyone here ever seen binge eating/bulimia as a result of PANS and/or Lyme/co-infections? I had severely restricted food intake for four months starting last April and lost 20 pounds (I was small and borderline underweight to begin with), but then I got another high-dose IVIG and started eating more again. Since then, I’ve cycled between restriction and binging/purging through excessive exercise, and honestly, it’s ruining my life and my body. Any insights/sharing your experiences would be greatly appreciated. Is there anything besides therapy that I can do? Or is there a particular type of therapy that any of you have found helpful? P.S. Yes, I have Lyme and Babesia (likely since my relapse last year). I’m twenty-two with at least 10 years of PANS (8 untreated), but I was in remission until I caught Lyme last year. At this point, I don’t have many other symptoms, but this one is completely out-of-control, and traditional eating disorder therapy has been of little use.
  12. 18 y/o with PANDAS

    Hi Sarah, I'm twenty-two and have had PANS since I was eleven, and probably even longer. Most PANS specialists will treat adults, because there are plenty of us who still have it. My worst episode started when I was about nineteen, and that was the first time I went to see a "pediatric" doctor who specialized in PANS. I was successfully treated by this doctor and went into remission until I got Lyme a few months ago. There's a list of specialists on the PANDAS Network website that you could look into. I'd be happy to talk if you'd like to message me!
  13. I'm mostly a lurker on this forum, but I thought I should weigh in on this. Some of you might know me from my blog, but for those of you who don't, I'm a 20 y/o with PANS. Last year, I, too, had very bad chorea and tics in addition to paralysis attacks and restricted eating. I've had over a year of antibiotics, a T&A, 2 IVIG's, and... Prednisone! A year and-a-half ago, my PANDAS doc put me on a 6-week, high-dose taper, starting at 60 mg. I weighed about 100 pounds. I was very underweight before the steroids because of my restricted eating, so I gained about five pounds in a week (some of this was because I finally started eating a reasonable amount of food). By the end of the second week (at 40 mg), I got the moon face and horrendous acne. I then had a terrible panic attack when I dropped from 40 mg to 20 mg... That being said, these doses relieved my symptoms enough to go back to college. I made it down to 10 mg, but then the paralysis attacks came back, and I had no concentration whatsoever. My doc then put me at 20 mg for several months, and before long, I had very few symptoms again. It allowed me to make it through another semester of college and feel like I had something approximating a "normal" life. Like your son, I'm also a runner and very active, and even after 5 months of high-dose Prednisone, I only ever got up to the healthy weight I was before this whole nightmare. Everyone responds differently to steroids, though. The main problem Prednisone caused me was high intraoccular pressure, which could've eventually led to steroid-induced glaucoma (we had no idea that could happen!). Thankfully, the high-pressure abated once I got to a lower dose. Given how long I've been on steroids, I'm very lucky to have not had worse side effects. If any of you will be on steroids long-term like me, you should go to the eye doctor regularly. Anyway, to make a long story short, I am still on steroids to this day. Every time I would try to taper, my symptoms would come roaring back, so I was at a therapeutic dose until I finally went into remission this summer. Now, I've tapered to 3.25 mg and am struggling to go lower. I don't expect to get off it for at least another year. Prednisone gave me a little bit of my life back, but it's going to take a long time and a lot of perseverance to finally get off it for good. I hate that I'll be taking it for so much longer, which only reminds me each day of how terrible things once were that I've had to be on it for this long. Whatever you do, be careful with Prednisone. It's a life-saving drug and can provide a tremendous amount of relief, but if you don't know what you're doing, it can ruin your life. If your son starts getting withdrawal symptoms, don't be afraid to talk to your doctor and slow the taper down a lot. I doubt you'll have as much trouble with withdrawal symptoms as I have, since he's only going to be on it for 8 weeks, but know what to look for. Good luck!
  14. Tonsillectomy and tic resolution?

    I just had a tonsillectomy last month and did have immediate improvement with tics. I also managed to avoid flaring after surgery, which from my understanding, is slightly unusual. Since then, I had a minor cold and had a mini-flare of tics again and difficulty walking (my legs giving out on me), but over all, I'm doing so much better. Don't be suprised or discouraged if the tics come back a little bit in a couple weeks. It can be two steps forward and one step back. I don't know if my immediate improvement was from the steroids or the fact that the infection was gone (or both). I had Serratia marcescens in both tonsils and my adenoids. I've heard that a decrease in symptoms after steroids means autoimmune, but I've also heard that some people have worsened tics on steroids. I guess it varies from person to person.
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