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Hitman3161 last won the day on July 13 2017

Hitman3161 had the most liked content!

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About Hitman3161

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    OCD, PANS... Lots of other things.

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290 profile views
  1. Antibiotic side effects!

    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!
  2. T&A viable before sinus surgery?!

    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.
  3. T&A viable before sinus surgery?!

    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.
  4. Hi guys, Just a quick question as I find myself continuously fighting unnecessary objections from my parents despite a slight but significant improvement to the abx. Very stressful, it's like climbing the Great Wall of china! I've had a prior consultation with a prominent ENT who found large amounts of thick green mucus occupying my sinus cavaties. Scans are scheduled with the possibility of surgery. Here's the thing, after following Dr K's advise and responding positively to the antibiotics, I'm seeking a private T&A. I've noticed indeed that my tonsils are inflamed which only adds weight to the diagnosis. My question is would T&A be viable 6-7 weeks before attempting to remove any inflammatory fluid occupying my sinuses? My parents are now arguing that T&A won't be allowed where I have an ongoing infection in the sinuses! Unfortunately, due to NHS guidelines T&A surgery can only be sought privately (so costs ££££) They have on occasion begrudgingly accepted the idea of resourcing treatment in the past, but I still feel there not truly onboard with pandas in the clinical sense. I know you guys are the experts, you've been there, have experience, and gone through the experience! I was just hoping if someone could confirm that T&A first would be OK, as I'm desperate to get the treatment now instead of fumbling around talking to people that aren't truly onboard with me experience. Thanks guys you've kept me fighting on through a difficult few months! God bless.
  5. HELP!

    Hi Bob, Thanks for your kind words of encouragement. Yes, I can gladly confirm a very positive response to clarithromycin - I've been taking it for roughly a week now, and have seen an almost spontaneous improvement. I will continue to update, and see the process through. I am due sinus surgery soon, and then the decision will arise as to whether or not I can finish treatment in Chicago. Obviously, the single biggest diagnostic factor was the response to the anti-inflammatory/immunomodulatory effects of the antibiotic, which is definitely an upshot!
  6. HELP!

    Hi guys, I'm very sorry to keep going on. Yes, there is a positive response to the antibiotics, but my step father is very cynical and demeaning and my mum is rather reluctant to fund treatment in the states, grasping at other less likely and unhelpful explanations. Psychological therapy hasn't helped at all through the years, my cognition is in dire straits which has impacted education and occupational opportunity and left me in a state of pure social isolation for the last 8 years! I'm very uncertain of my future now. I have been marginalised and ostracised by my peers, and coping alone with no support at all - having to pick myself every time - has been a mind bending experience. This post is just to ask at opportunities to raise funds, or if anyone could provide any pointers. These last 8 years have really been a humiliating experience. :/ I don't think I have the strength to go much longer. Thank you for taking the time to read, I only wish I had a more understanding support network in reality...
  7. Antibiotic side effects!

    Yes Bobb, thanks. They are currently in the process of scheduling scans and I have been offered possible surgery of the sinuses. Dr K has wrote back to me regarding treatment details and costs to include T&A and IVIG. At the moment he is only offering his services in Chicago, so I guess after sinus surgery I'll have to organise a visiting visa for treatment. This sounds rather complicated, I hope it won't be a lengthy process. Of course, it means I won't be able to attend university for another year! I just feel my life slipping away. One of the reasons why I've become so isolated in my life is due to selective mutism and the fear of talking in social situations. It's a horrible position to be in, I just hope I get the potentially life changing treatment in time! :/ UK guidelines don't allow for either T&A or IVIG in the treatment of pandas.
  8. Antibiotic side effects!

    As always thanks so much, advice well heeded.
  9. So I've recently attended a much needed ENT appointment, and am awaiting immunomodulation therapy overseas. During the physical exam the Dr pushed a camera up my nose which showed a whole load of green gunk! Thankfully she prescribed a 5 week course of clarithromycin (500mg for the first 5 days, 250mg there after). The medicine has resulted in an almost instant benefit on cognition and sleep, but has gave me some ghastly side effects - mostly stomach cramping and toilet trouble. Will this pass during the course of treatment? Or will it only pass after termination of the medication? I really don't want to give up the beneficiary effects of the medicine as I have noticed a slight but noticeable improvement. Anyone had similar experiences or could shed some light to the matter? Many thanks
  10. I believe there's a consultant neurologist at St. George's hospital London called Dr Jeremy Stern who takes a special interest in tic related disorders... He's also familiar with PANDAS as a diagnostic consideration. I was originally advised to see him when I reached out through a series of emails, but his care is restricted and limited to children, which is why I've sought Dr K. Hope this helps...
  11. Staring spells, zoning out

    This is very interesting too... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340647/#!po=45.7447 It describes a case study of a young patient with comorbid diagnoses of PANDAS and Kleine-levin syndrome ( extraordinarily rare). it mentions him experiencing staring spells... And to quote "Irritability, oppositional behaviors, depersonalization and derealization, and mania may also present in both KLS (Reynolds et al. 1980; Gillberg 1987; Sagar et al. 1990; Arnulf et al. 2005, 2008) and PANDAS (Swedo et al. 1998;" The thing is... when you follow those sources there is no mention of the aforementioned symtoms occurring exclusively as part of pandas. But then again, I've heard another author say the longer PANDAS goes untreated the more it can present it self as a schizophrenic like illness... I don't want to scare you or anybody, as everydody is different with regards to an underlying 'cause' for their condition - but it would definitely be relieving to here if this 'zoning out' business responds to treatment... I just hope we both manage to get rid of them!
  12. Staring spells, zoning out

    Hi bws, Cheers for replying! Possibly yes, but they only occur during an exacerbation of symtoms, if there was any epileptiform activity you would think this would be entirely independent, unrelated, and occur only arbitrarily - even in times of wellness. I have had an antibody test for both bartonella and lyme which came back negative, so I have looked into this thanks. Haha, to put it as gracefully as I can - I have had MANY reactionary social disruptions, and been through a lot of social trauma as a result of struggling so much on the inside and feeling misunderstood, so it may be a psychosocial matter (PTSD) - although there was the same general pattern of illness long before. And to be honest most of the trouble I've been in I've brought on myself, either for being too selectively mute or too emotionally labile, long story! Lol On the other hand, there is such a sudden acuity in onset interspersed with all the other symtoms, that makes me kinda believe it's all related somehow - for want of a better phrase I literally become a 'brain fart!' Maybe others have experienced this and somehow seen it resolve with effective immunotherapy. I'm glad you can relate, but I get how troubling it is... It's awful! I don't really know, I just hope it ameliorates with everything else...
  13. Staring spells, zoning out

    Hi Suzanne, I've only developed them since about the age of 21. They are episodic, but only occur during periods of acute exacerbation with an influx of other symptoms. I have heard of simple focal or absence seizures, but I'm trying a little harder to find a unifying diagnosis that encapsulates the full nature of my experiences. Could it be that this symptom dissipates with resolution of all other symptoms? Could it be part of PANS? Also as time goes on, is it possible for more sinister symptoms to develop due to resultant brain damage? I know there are no known longitudinal studies and profiles in adult patients that have carried symptoms since childhood, but anecdotal reports in the literature would suggest symtoms remininscent of severe mental illness may well develop! I have asked my PCP about EEG work up, but he suggested that its very unlikely I have epilepsy. Who knows?
  14. Intrusive thoughts

    Post deleted - made by mistake
  15. Staring spells, zoning out

    Yes, thanks for that! I have previously suggested the use of lactimal to my psych when presenting information regarding dissociation, blank spells, and Dr Daphne Simones research and treatment in to depersonlization in New York, as yes, it acts on the glutamate system. His response was that he restricts its use only to bipolar disorder for it's mood stabilising property, and wouldn't be happy to prescribe it any other condition. I'm so sure your right about glutamate dysregulation, but I can't find a single mainstream Doctor willing to listen. it looks like I'll have to follow the natural route...