Hitman3161

I hope this feeling of weakness passes. I have no experience with steroids and to be fair at this point I have no idea what my body is telling me. I know stress at the extreme end can exacerbate the symptoms. I’m getting a course of antibiotics on Friday. its possible I’ve picked up another infection but there are times when I’m totally fine - I’m on and off like a lightswitch. Ill keep you updated though I haven’t lost hope yet. And thanks again for your kind words. unfortunately, there isn’t a simple treatment protocol you can follow over here - it will be quite a few years before they change the guidelines. I was only reading a post yesterday that described how insurance companies reject IVIG on the basis of pandas because they are totally ignorant to the fact of its immuno modulatory effects! It’s awful but I’m sure it will change one day! There are a couple of seminars over here in the UK, but next to that there’s nothing. Dr K is the only doctor that has offered to treat me, he told me how my response to the T&A underscores the diagnosis even further. I think after the Cunningham panel, my mind will be put to rest over the issue. But at the same time it doesn’t help me on my quest for treatment. one thing I do need to do though, apart from staying on abx is moving away to find a better life for myself. Im almost unrecognizable from how I was a few months ago. Life is extremely complicated. thanks again though.

Thanks Mary. I took a short steroid burst, I could be sensitive to the drug. All I know is I’m feeling incredibly weak and dizzy right now. I have no fever but I have that general feeling of malaise. I’m having the Cunningham panel done soon it should help confirm either way the legitimacy of what I’ve been through. i have been socially isolated for years and have experienced enormous amounts of social adversity with regards to OCD and the clinical picture of pandas as a whole. Yes, I very much improved after abx and tonsillectomy. Abx always seem to help. Im not sure if I’m experiencing some kind of withdrawal syndrome. All I do know is that this ‘illness’ isn’t a progressive one, for any hope of long term recovery I’ll have to move. Life is hard right now, but thanks so much for your help.

Hi guys quick update. Looks like Ill have to postpone any idea of IVIG for the moment - my parents want me to have a Cunningham panel and immune function tests done as a confirmatory measure to justify any need to try IVIG. I feel very ill at the moment and I’m hampered with fatigue and weakness. I’ve just completed a 5 day steroid burst of prednisone 30mg without taper. Is it possible I’m showing signs of withdrawal? At that dose is a taper necessary? Im a little worried now! I’m happy to go through with the Cunningham test though as that will be decisive despite improvement on abx and the outcome of the tonsillectomy last year. Is it withdrawal or is my body fighting an infection that wasn’t cleared properly and now I’m having some kind of rebound effect? I feel so faint.

Thank you bob and Mary will do

Sorry about the rant; last year I looked like I had dementia. I always remember the very same symptoms all the way through, every time I was ill. I have argued so much with my parents and they are unwilling to help. The medical community over here hasn’t taken me seriously, but the evidence has always been there of PANDAS. I am in an impossible situation as there is no clear course of getting better. My gran is my last hope at providing the funds for one treatment next month apart for that all I can hope is the disease goes back into remission. I’ve heard all the horror stories of the untreated adults, and I’ve had this for most of my life - it is a pediatric condition. I'm stressed to the max, because I know with out any of this treatment I will never recover. the worst part for me apart from the collateral damage this desease has caused to my reputation and future prospects. Is that my parents will just put the phone down on me whenever I look for a glimpse of hope and understanding. I am completely lost. I don’t think about normal things anymore all my time is spent consumed with this condition. without it though and in remission my whole personality changes. There is the OCD and anorexia but the short term memory loss and the extreme anxiety has to be the worst part of this condition. if it was mental illness and I don’t beleive it is surely that wouldn’t be such a stark and acute change in all areas of my functioning. no one loses their memory over night like a light bulb. Rant over, sorry guys! I’m terrified for the future 😕

Will do. I’m in a desperate position at the moment. Truth be told my mother and step father are against the diagnosis. there is no family support at all. Once the Dr’s over here opened me up they never bothered to identify the bacteria that had attached me for so long. honestly, I totally alone and I look like I have dementia with every symptom exacerbation. Relapse and remit for years and years. on and off like a lightswitch. I wouldn’t be able to afford monthly IVIG. And I’m the case I go to Chicago, I have to go alone. This is incredibly hard. I was even thinking about Switzerland for some time, my life has not had a single once of normality for such a long time. I used to study physics, when I’m symptomatic and it hits at once I struggle to count change over the counter. is there anyone I can talk to out there. I’m sorry to be a burden I’m just so desperate. I know every time the symptoms abate I feel like a completely different person. life really dealt me the wrong cards. PANDAS I’m sure it is as Dr K has already told me. is there any hope that one IVIG will be all it takes? antibiotis helped; after the operation there was complete bliss for a short matter of months. Dealing with this is one thing rebuilding a life is another. I’m totally lost at the minute, I just don’t know how one can go off and on like a light switch for so many years...

Thanks Mary. I’ve been told there is 40% chance of success with IVIG. The worst thing of all is in retrospect I can say I’ve had this since childhood and never received any treatment whatsoever. So many years of relapsing and remitting. currently I’m only able to get 500ml of cephalexin liquid form, I do have some prednisone to test the efficacy of IVIG, but the fact remains I’ve been limited in support for so many years and essentially in all that time it’s gone untreated. At this rate I’m looking at the looney bin. The operation last year was a success though, and showed just how many times my body had been hit with bacterial infection throughout the years. I think in in life sometimes you have to just bite the bullet, I don’t have full family backing, I’ll be traveling to Chicago alone next month. My Nan\grandma is the only one I’ve got. The clinical picture never lies, I have no insurance as I’m from the UK, so it’s self pay and if it works It will have to be a one hit wonder. The situation really is that bad. I need a miracle! But thanks again, I’ll make sure I’m clear of any possible infection before the treatment. sorry to sound so negative. My symptoms are: urinery frequency short tem memory loss inability to concentrate insomnia, depression and hypersomnia OCD intrusive thoughts food restriction loss in academic ability behavioural regression, and house bound anxiety on and off all my teens, the amount of social stigma and rejection I’ve faced because of that is enough in it self. Does it sound like pandas though? I don’t think I’m mad, try telling that to a medical professional over here! I wish everyone luck out there, it may be a little late in the day for me but I’ll stay strong and see it through to the end

I do feel hopless at this point. Realistically, this one round of IVIG is my last hope. It doesn’t do much to account for the collateral damage that has been incurred over the many years of relapse and remit. I have faced enormous social stigma over the years and remained socially isolated in all that time. The symptoms themselves perfectly describe my case, as does the evidence of chronic infection last year when they finally removed my tonsils - full of puss; a puss filled cyst was also found in the sinus cavity. I’m sorry guys, the illness has really robbed me of my life. I only wish I pursued this at 16. During episodic flares my personality has dramatically changed along with behavioural regression and almost complete dysfunction add social media and psycho social stress and you have equated a living . Dr K even describes it on his page as being like ‘the sorrows of welter’ I’ve never had a girlfriend, I’ve never really had friends as the illness has progressed. I had a few months of bliss after the operation, only to downturn in the spring. I feel like I’m grasping at straws here with the IVIG but I’m determined to see it through. To be honest sometimes I wish I wasn’t here at all, life feels like it has no meaning and trouble follows me everywhere. Its like I’m two entirely different people at times, one in desperate state contending the illness -totally out of my tree - the other a calm, composed and proactive young man trying to forward his life. I do appreciate your support, life just won’t seem to let me move on from the past. I will definitely keep you posted though, and cheers Bob, Mary. Thanks again, much obliged for your support.

Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health. I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc. I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years. I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults. Thanks so much for your support. fingers crossed 🤞

Hi guys, I haven’t posted here for a while. At at the end of last year I received a tonsillectomy and removal of my adenoids that showed evidence of chronic bacteria infection. clinically the Pandas diagnosis fits me to a tee, and the diagnosis has virtually all been confirmed with Dr Kovacevic. I did manage to find some symptom relief and returned to a good baseline state of functioning after the operation but unfortunately the symptoms have returned in the last couple of months. I’m scheduling IVIG treatment soon in a last ditch attempt to find some long term relief and reclaim my life. I’m incredibly anxious at the moment as I realise taking into acount my age the possible prognosis! my question is a simple one, are there any success stories out there after receiving IVIG at such an old age? From all reports the oldest case to receive IVIG with a successful outcome was 24! Any feedback is much appreciated.

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!

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.

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.

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.

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!

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...

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.

As always thanks so much, advice well heeded.

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

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...

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!

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...

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?

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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...