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  1. Today
  2. Does your psychiatrist believe that there is such a thing as herx? Despite the good documentation for this phenomenon as far back as when they were treating syphilis with mercury (!), some doctors think herx is hogwash. If he does actually feel that way, he has no choice but to explain your recent symptoms another way. They way he did explain makes even more sense if he is a strong advocate of SSRIs, which is typically how psychiatrists lean. I personally would go with your LLMD's opinion, and if it is herx, then (if you can bear this thought), celebrate, because it's good news. It means you have the tiger by the tail. Hold on! We used rifampin for my son's ehrlichiosis (another tick born disease), and if I recall correctly, we had a herx.
  3. Steroids can help, but some have reported symptoms getting a little worse first before they got better. My own experience is that they didn't do anything - so that is also a possibility. I don't think steroids will prevent another flare in the long term, because they are typically only administered for the short term.
  4. Certainly a kid can get over a flare from a cold without steroids - at least we have. Prednisone didn't do anything for our child, by the way - so don't be surprised if nothing much happens. Your first question, "Will immune system eventually right itself?" is like a trick question. I think the right answer might be "possibly only at puberty, or an Ivig, or plasmapheresis". In other words, these children continue on being susceptible to flares because of an autoimmune condition, but one fortunately that sometimes goes away at puberty.
  5. thanks Bob. I mean, I can't travel within the UK. I feel lie you probably want believe me about that; people on here seem to hink that if it's in the UK, that should be near enough for anybody! I forget who it was that said, "The difference between the British and the Americans is that the British think a hundred miles is a long way, and the Americans think a hundred years is s long time". But honsetly, you'd seen me, you'd agree that expecting me to go regularly to anyone mpre than half an hour away is just not practiocable. But I was thinking that what he said about treating people at home if they need it suggests that he might understand, and look for other people who would understand, the idea that sometimes treating people at a distance is nescessary.
  6. Yes, I have known Dr. Jenike to travel to patients that, because of their OCD, could not leave their homes. I was wondering if he has UK practitioners on his list, that was why I thought contacting him might be useful. I suppose that if he happens to be travelling in the UK, you could try to engage his services, but that would surely be a longshot.
  7. Has anyone been to Dr. Latimer recently? (2016-17)
  8. Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids?
  9. Yesterday
  10. My son had been fighting a cold virus which seems to have triggered some tics. His dr prescribed a steroid burst but today his symptoms seem a little better. What will steroids do and should I watch and wait until symptoms are worse? I'm so scared for him / will steroids prevent another flare? He had ivig in June. Thx
  11. That's great news! Really pleased for you. It's always such a relief when things do let p at al! Good luck with the operation, I hope that does good things for you too. Something I thought I'd mention: My symtpoms make it imposible for me to travel any distance, I could never get to Chicago. At the moment, our only hope if it comes to IVIg (I'm currently on herbal stuff for Lyme dises, under Amy Smith of California, so we're seeing if that'll work first) it to contact those people at Oxford who did that trial recently about autoimmune causes of hscizophrenia (which used some kind of intravenous treatment, I can't find out whether IVIg or PEX), and ask them how they wangled it and whether they can think of any way I might be able to try it. WOrth considering. Yoiu'd probably still have to pay though, bu it might not be as much. (chunk of links, which is as far as we' ve got ourselves at the moment: Autoimmune Encephalitis Alliance Belinda Lennox — Department of Psychiatry King's College London - People at the Stress, Psychiatry and Immunology Lab & Perinatal Psychiatry Professor Ed Bullmore :: Cambridge Neuroscience Depression: A revolution in treatment? - BBC News BBC Radio 4 - The Inflamed Mind Autoimmune attack behind some cases of schizophrenia | New Scientist )
  12. Thanks yourself. It's nice somehow to know one othe person in the UK who's dealing with this, even if we don't actually overlap very much what with having (what seem to be) differe t infections! As for me, I'm doing my best but it's difficult because my symptoms make it next to impossible for me to travel; I could never go to Chicago like you're thinking of doing. I've posted on your other thread.
  13. 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?
  14. Hi Wombat, Im currently registered at UWE on medical leave, so I have a year to make a decent functional recovery. Thanks for your advice, yes I've been taking lots of dietary supplements including Vit D, garlic capsules etc. I definitely look out for peppermint. No, I'm having the T&A done privately now through Bupa. I recently had my NHS ENT consult (with a internationally recognised ENT), who thankfully allowed me to trial the abx (clarithromycin) and scheduled me for possible sinus surgery. She is aware of the preliminary diagnosis of pandas and my consultation with Dr K but said T&A's are generally prohibited according to NHS guidelines so was recommended a private consult. I suppose your in a similar position to me being at a similar age, I hope you've sought efficacious treatment too. Please let me know your progress, I wish you all the best, and if you need to talk sometime, I'm always here. I'll definitely heed the advice; thanks again!
  15. We just travelled from Seattle area to Hinsdale IL to consult with Dr. Kovacevic and the had IVIG treatment. He is nothing short of amazing. I highly recommend traveling to see him. The travel and treatment are expensive but my son was in excellent hands, and Dr K expects that he will have a 90% or greater resolution of symptoms within 3 months. Good luck.
  16. Where did you hear that? Did your doctor tell you? I had that impression, that you couldn't have it, but I didn't know what were the actual guidelines involved if any. I did Open University myself, by the way. Just a thought to consider. You can )I think) transfes credit if next year you find you're able to go to a regular universiy. Hope your innards are bettee by now. If not, try and get peppermint oil capsules, I always saay that, they work like magic on some kinds of stomach trouble - they dpn#t work for everything but always worth a try. Healthspan.co.uk have got them.
  17. My son who is nine years old just had IV I G treatment over the weekend and will be starting school in a couple of weeks. I am really nervous. I have and Kate with him about handwashing and not sharing utensils with others and try not to eat with his hands. We have put him in a smaller school with a class size of about 24 kids in the upper elementary part of the school. In addition, I am giving a talk to the parents at the school and sending home fliers with the kids to let us know if anyone has strep throat and to educate others about PANDAS. In the meantime we are Asking other parents before play dates if their child or anyone in their family has had strep throat in the recent past. Then we can make an informed decision about whether the play date should happen or not.this is uncharted territory and we will see how it goes.
  18. It's useful as a diagnostic tool. It is usually used to track improvements during treatment. We arlready are CDC and Igenenix positive. Positive via mainstream testing and alternative testing. Totally symptom free though.
  19. Hello Kakrpa, Ah, I'm afraid even saying the word out loud one is well into screaming and beatin my hea against the walls territory, let alone hearing it said out loud. Wer'e talking PANS-style monster OCD here. I know I just shouldn't be that extreme, but I can't help it. I reongise that the idea is to not do that, but I'd have become totally irrational by then. I need to say, I do know perfectly well what ERP is and what the basic principles are. (I'm not meaning I'm taking offence at being terated liked I don't know. I can just see this going on for a very long tome with people telling me things I've known by heart since I was 14, before ever getting on to anything relevant, if I don't set that straight now.) it's just that I can't work out exactly how to apply it to something as weird and abstract as this. That's why I'm asking a special qestion on ere. Thank you very much for still being here and talking. For instance, when the trigger is a thought in your head, what's the distinction between expoxure (allegedly a good thing) and ruminating (a Bad Thing)? Yes, just thinking this word can set me off, or rather, wen I sponaneously think that something is describable as "[...]". And how do you disentangle the rational fear, the irrational fear, and the compulsion? What I mean by rational fear is, that I'm kind of making this word mean all inds of things hat it doesn't mean according to the dictionary - well, that it can sometimes, in fact quite often, be used to imply, but that aren't part of its definition. (I would rather not come down to anything more concrete than that unless I can do it by private message.) Consequently, just having people tell me (as you and Bob just did) that what I shoul do is et used to it, w any apparent acknowledgment of what I've said about how it means all inds of horrible thing to me, just makes me more agitated and restisnt than ever, because it seems as if they're tellin me I have to accept and get used to accepting all the horrible things that I associate with that word! I sort of see that what's really happening is that you're just taking it as readd that all my reasons for objecting to it aren't in fact logically sound, and jumping straight to the en. But I don't in fact have that level of insight yself, not reliably! So, I'm rationally against all the things that the ord maes me think of, and irrationally against the word itself and anything it can mean on account of that. Sounds starightforward written down, but since the whole point of a word is to mean things, it's very difficult to comprehend in practice. It's rather similar to the problem I see people with paedophile OCD having. They react with horror to being told that they shold "accept the thoughts" and "traoin themselves to not mind them", beca\use they go, "what, you're s\ayingb I should accept being a paedophile and get to npt mind it?" Of course, the thing there is that it's not being a paedophile you're supposed to accept, it's the THOUGHT that you might e a paedophile. But that's a ferociously difficut thing to keep straight in yoiur head, hence the constant stream of people asking questions lie that on the OCD fprums I used to use, and with mine it seems even more difficult. Is there anything that helps yiou get a clearer idea in your head of the difference between the actual word (and its actual meaning in itself) and the horriblethings you're associating it with? I think this is part of the extra stuff that CBT has and ERP dpesn't - the so--called cognitive lement - i.e. trying to learn t o understand why what you're supposed to be doinng isn't in fact the disaster yoiu think it is, rather than just "never mind why, do as I say". I think propbably how much you need the cognitive side rather than just going straight for epxosure depends on how good your insight is already . Well, my insight is crummy. That sounds a little like special pleading, but hinestly it is crummy. Hello Bob - Is there anything particularly special about this one and thd people he recommeds? I have sound sensitivities and really nt good with podcasts. PANS-literate sounds good. When I did a We searh for his name I also saw somethi g where he said: Which sounds encouraging, obviously he can hardly come and visit me in the UK but surely it means he would at leat ne able to get his head around the concept of "can't travel to see someone is there anyone who can work long distance"!
  20. Hi bob, Jan Once again the encouragement is always appreciated, yes It does feel like "climbing the wall of China" at times such an obstacle, simply due to the inordinate lack of recognition within the medical community. I hope I'm on the right track too bob, cheers again. Jan the NHS is a Public Health Service that is funded by tax payers, treatment is usually free on the NHS, but operating guidelines and lack of awareness severely hamper the treatment process. In no way I'm I disrespecting the NHS (the doctors are the same private regardless), there are some truly 'world class' physicians over here but again it's finding a doctor who will treat pandas. You guys are far more advanced than the UK, both in research and treatment modalities but after a few to many dark months the tide is slowly turning and things are looking up! I just can't wait to update when the surgery has been carried out, so far so good but I'm still preying I respond. I do trust in Dr K though so It should turn out well - it's always good to have a Dr with real prestige behind you.
  21. I am not familiar with it, but I see that back in 2008, here: http://truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=10 there was an opinion expressed that it was not so reliable, and that LLMDs were not putting as much faith in it as they used to.
  22. I have no direct experience of sinus scans and surgery, and can't contribute to the medical question. But I really do think you are on the right track by pursuing both of these, so I wanted to encourage you along that difficult "great wall of China" path.
  23. Can you do the whole thing privately, do the T&A and sinus surgery in one operation? That would seem to make the most sense, at least with what little I know. I suppose you might have to pay privately for the whole thing and I have no clue how the system works there, but it may be worth asking the ENT if she could bill separately for the T&A and then bill NHS for the sinus part. Obviously you'd need a sinus CT first, and I have no idea how long that takes to schedule in the UK (here, it can be scheduled very quickly; I think we did ours the next day).
  24. My son has been driving for 10+ years now with tics not having any negative impact. He has had years of Cognitive Behavioral Therapy, but really has not needed to use it specifically with regards to driving, at least not that I am aware.
  25. Hi Vittorio We have always used Magnesium Sulfate (Epsom) as baths and lotion for transdermal magnesium
  26. Hi Jan, Thanks for replying. It's just due to the fragmentary nature of the healthcare system over here, my only option to receive T&A is to go private. My ENT has told me that tonsillectomy won't be possible under her care in the NHS, but I may still be due for sinus surgery at a later date. I'm still under the indirect care of Dr K, who insists on T&A - and to be fair my tonsils are quite inflamed and sore. If I am to receive possible IVIG at a later date then I've been told that T&A is absolutely necessary with regards to pandas. Unfortunately, even though PANDAS hasn't been disputed by my healthcare professionals, only Dr K is recommending treatment directly.
  27. Last week
  28. The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A. The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it. My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT. The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery . New doc felt he could tell just by looking at him that he was stuffed. However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy). I was surprised that he was surprised that this wasn't handled earlier.
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