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About markwils5

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  1. Hi there, I'm so sorry to hear about all that you have suffered through. I am 25 and have had my own challenges with PANDAS and Lyme but not nearly as long or severely as you have. My guess is that a large cause of what you are dealing with is Lyme and some co-infections (Bartonella, Babesia, etc.). A few things I would recommend in addition to the above: - Cunningham Panel by Moleculera Labs (to see if you have PANDAS or PANS) - IGeneX Lyme and Co-infection testing - you should test for all the co-infections (Lyme, Bartonella western blot, Babesia, Anaplasma, Rickettsia, Relapsing Fever, Ehrlichia, etc) - IGeneX is the most accurate Lyme testing out there; the traditional western blot and ELISA is not very accurate, though if you do get a positive that is helpful) - ASO and DNASE B strep antibody tests (to further support PANDAS diagnosis) - Wheat gluten sensitivity testing through Cyrex labs (to see if you have gluten allergies causing increased inflammation) - Food, environmental allergy and mold testing (to see if food or other allergies are causing increased inflammation) - there is so much more...but this should be a good start I think you should definitely seek out an Integrative Medicine doctor, someone who looks at a variety of possible causes of why you are sick. Unfortunately for so many of us, there isn't one small thing that causes our symptoms, it is usually a lot of factors: mold, lyme, parasites, strep, allergies, mast cell, etc etc. If you are having difficulty finding someone to treat you in Germany, there are options in other countries where you can have phone consultations. It sounds like you have made some diet changes but the first step you can do today to start your recovery is improve your diet. No sugar, gluten, or dairy. This should help with everything. It may take a long time for you to see significant changes in symptoms (months to years for some) so hang in there. You may see small gradual improvements along the way. Some people recover quickly (weeks) but adults who have been sick for a long time tend to take months more often than weeks. So don't be discouraged if diet and other treatments don't yield results immediately. Good luck!
  2. Anyone have any advice / experience on sphenoid sinusitis? Is it a piece of the PANDAS puzzle? I just got diagnosed with a “right sphenoid sinus disease” on a CT scan. ENT said it is a small chronic infection, but probably not worth worrying about if it is not causing physical symptoms. Is the ENT right? Or is this a must-surgically-remove-for-PANDAS situation? Please and thank you. Really need guidance on this one.
  3. Anyone been to Lyme Mexico? Would love to hear experiences/stories. I can’t tell if my anxiety, depression and intrusive thoughts are caused by PANDAS or Lyme. I have + Cunningham, consistently + ASO and DNASE B despite a year of antibiotics but I also tested + via IGeneX for Lyme and several co-infections. I have no physical symptoms of Lyme but a year of antibiotics for Lyme, PEX, IVIG and PANDAS treatments aren’t helping so makes me wonder if it’s all Lyme-induced psychiatric symptoms. Seems Lyme Mexico treats both PANDAS and Lyme.
  4. I agree that antibiotics will not completely eradicate PANDAS. I made the mistake of thinking they would 12 years ago. I had PANDAS back in 2007 when I was 11 years old. Did 8 months of penicillin and my symptoms completely disappeared for 10 years. Once I was in college they came roaring back and I am having a lot more difficulty recovering this time around. So no. Antibiotics are a temporary solution. You can get rid of strep with them but with another exposure your immune system still will create autoantibodies that will attack your brain if not dealt with promptly. Don't make my mistake - do the IVIG even after you feel better from antibiotics to retrain your immune system so future strep infections will be significantly less likely to trigger the autoimmune mess and PANDAS.
  5. I think it depends on your age. I have had two episodes of PANDAS in my life. First was when I was 11 years old. Sudden vocal repetitions of phrases when spoken to and lots of hand washing OCD. I was a happy, not anxious, middle schooler and I felt mostly normal - I just had these vocal tics and OCD. I went to school but made accommodations with my teachers not to call on me in class and my parents explained to my friends what was going on. This went away slowly with 6 months of antibiotics and I was in remission for 10 years. I went on to be a recruited division 1 athlete at a top 5 university and was happy, popular, and felt like the luckiest person in the world. I thought I was done with PANDAS. Now I am in my early 20s and battling a much stronger PANDAS/PANS relapse. I have no tics or OCD at all just debilitating social anxiety, depression and obsessive thoughts/worries (which are actually considered a form of OCD) that came out of nowhere three years ago and slowly built up in intensity until I had to leave college. This time around has been more challenging as Lyme and co-infections are involved and I haven't gotten better yet after a year of antibiotics. I think older PANDAS patients experience more amygdala-based inflammation (mood/anxiety issues) whereas kids experience more basal ganglia-based inflammation (tics/OCD). Just my two cents.
  6. I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  7. I just got plasma exchange almost 3 weeks ago after a year of treating candida, Lyme, Babesia and Bartonella. I am really struggling right now with symptoms (mood based with anxiety, no OCD or tics) and haven't seen any improvement yet. Would love to hear others' stories of healing from PEX and how long it took to notice improvements. I almost feel like I'm getting worse. I'm 25 and just want this suffering to end and to get my life started.
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