Jump to content
ACN Latitudes Forums

DreamingPanda

Members
  • Content Count

    17
  • Joined

  • Last visited

  • Days Won

    2

DreamingPanda last won the day on December 5 2017

DreamingPanda had the most liked content!

About DreamingPanda

  • Rank
    Member

Contact Methods

  • Website URL
    https://thedreamingpanda.com/

Profile Information

  • Gender
    Female

Recent Profile Visitors

822 profile views
  1. I second the investigating Lyme. So many of us with PANS/PANDAS also have Lyme, and it can cause these symptoms without PANS, too. And yes, PANDAS/PANS can absolutely affect adults! I'm 22, and my worst attack was at 19. I hate that "pediatric" is in the name at all. I have a feeling a lot of cases in teens and young adults are missed because everyone assumes it's a pediatric disease. I'm looking forward to the day when it's officially renamed Basal Ganglia Encephalitis, or when more doctors are willing to consider it a type of autoimmune encephalitis (my PANS neuro says it is). Tha
  2. PANS and Lyme/co-infections can certainly happen all at once. It's also possible to still have PANS after an infection is gone. I find it’s sometimes impossible to separate them all (especially Bartonella), and until the infections are under control, you might not make a whole lot of headway with PANS. On the other hand, it’s my understanding that treating the infections can sometimes cause so much inflammation that it re-triggers autoimmunity. It happened to me. Check out this post I found on the subject, written by an LLMD: http://lymemd.blogspot.com/2017/08/autoimmune-encepha
  3. Thanks for the information! Sorry for taking so long to respond. I've been caught up in college graduation and the holidays. I did the initial bloodwork that they requested, and it turned out that my vitamin D levels were way too high just from supplementing at 10,000 IU. Coimbra probably would have put me on 50,000 IU/day, so I'm not going to try it after all. At least not right now. After 9 weeks of IV steroids, this latest PANS relapse has come to an end, and I'm back to baseline. It turned me around so much that I went from failing assignments to getting all A's! I seem to
  4. 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 s
  5. 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
  6. 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, bu
  7. 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 functioni
  8. 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
  9. 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 exchange
  10. 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 treatm
  11. 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 dis
  12. 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
  13. 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
  14. 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 partic
  15. 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!
×
×
  • Create New...