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Hitman3161 last won the day on July 27 2018

Hitman3161 had the most liked content!

About Hitman3161

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    OCD, PANS... Lots of other things.

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  1. 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
  2. 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
  3. 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
  4. 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 st
  5. 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
  6. 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 sh
  7. 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 o
  8. 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 pos
  9. 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 rec
  10. 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
  11. 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 cla
  12. 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'
  13. 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 whic
  14. 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!
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