Hitman3161
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Hitman3161 reacted to MaryAngela in IVIG at 25
My son’s case was severe. We were in a very dark place multiple times, sometimes lasting over a year at a time. Looking back, I don’t know how we survived. What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it. My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results. He is now receiving monthly HD IVIG at least until the end of the year. His tics have been gone for the most part for over a year. His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues. He just started an herbal antiviral and an herbal antibacterial. We plan on trying either the Paleo or Ketogenic diet soon. Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health. Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.
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Hitman3161 got a reaction from bobh in IVIG at 25
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 🤞
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Hitman3161 got a reaction from bobh in 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!
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Hitman3161 reacted to bobh in Psychosis or PANDAS/PANS/OCD
I too agree that pursuing a PANDAS/PANS treatment protocol would be appropriate. There seems to be a wide range of symptoms to PANS, and my own experience is that it can morph a lot at times. It is (to me) remarkable that there is as much similarity as there is amongst PANS patients, considering how complex the brain and its reaction could be when bombarded with anti-neuronal antibodies.
I am presuming that you do have PANS, because the antibiotics helped. According to http://www.medicalnewstoday.com/articles/248159.php, "Psychosis is not a disease in its own right; it is a symptom." So if it is in your case not a symptom of PANDAS or PANS, then it would be from some other disorder that perhaps is unknown.
My argument for sticking with a PANS treatment is statistical, but it's strong. Take the disorders that you might be labelled with, and presume that they are distinctly separate and independent of each other. For example, whatever other disorder could have caused the psychosis, and PANDAS. They are likely both relatively rare. To get them independently is like getting hit by lightning twice. If they are really rare, it could be like getting hit by lightning on two different parts of your body at the same time. Yes, its possible, but its not the first assumption that should be made. The appropriate first assumption, is that all the seemingly disconnected symptoms are (most likely) caused by one source thing (one lightning strike) that causes a lot of complications (as an attack on the immune system might do especially when it morphs into an autoimmune disease). That one complicated thing just manifests in various and different ways, and differently over time. Only if that "one cause" assumption clearly fails should you move on to the much rarer possibility that you actually have 2 different root cause sources for your symptoms.
It is this kind of argument that was made by Dr. William Benitz for the very first PANS patient at the Stanford PANS clinic. He said “I have a rule of thumb for pediatric patients: They’re only allowed to have one disease at a time. It’s not 100 percent true, but for a previously healthy 7-year-old to develop what appeared to be psychiatric and hematologic symptoms from two different, independent processes didn’t make sense. There had to be a unifying diagnosis.” You could actually come up with what the "not 100" percentage is in your case if you know the incidence of the disease that caused the pyschosis. If a 2nd independent disorder occurs for less than 1 in 100 people (likely, I would guess), then Dr. Benitz's statement would be true more than 99% of the time. Why even expend your precious energy looking for another cause, first go with the 99%+ sure thing!
If you are interested, you can see Dr. Benitz's quote and the full context of the severe and partly untypical PANS case he references in that quote here: https://med.stanford.edu/pans/news/brain-attack.html .
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Hitman3161 reacted to MomWithOCDSon in Life!
Hitman --
I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported. You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources. It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally."
I can say, "Hang in there!" I can say, things WILL get better. But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality.
I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find. I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress? I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out:
OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality. Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy. All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have.
There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy. But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness: reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening? Reclaim little pieces of your life, if you can, however small. And then celebrate that return to some functionality, however brief or small a glimpse. That'll give you something to build onto.
And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment.
I know it's a lot to ask of yourself. Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents. But he still had demands made upon him, and we still set some expectations. Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents. We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself. Not fair. Far from easy. But you can do it! I know you can!
Wishing you all the best, and a giant, fighting spirit!
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Hitman3161 got a reaction from Plum99 in Life!
Dear All,
I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness.
Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated.
My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need.
Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education.
I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS.
Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'.
My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'.
He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function?
I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time.
My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have...
I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..."
Afterall, ignorance is always the true killer.
Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.
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Hitman3161 reacted to MomWithOCDSon in Psychosis or PANDAS/PANS/OCD
Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped. But I can offer this observation.
My DS's primary PANDAS presentation was OCD. When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description. He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him. Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality. He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him.
Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again. But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior.
I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior? I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves.
Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with. I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis. So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose? Chances are there's some inflammation in the mix, at a minimum. I say go for it!
All the best to you.
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Hitman3161 got a reaction from bobh in All Serum tests so far negative! Please help, disheartened.
Thank you once Bob, that's very kind of you in light of the situation. Unfortunately, I don't have the familial support to truly rally the cause. I've tried so desperately hard to educate them, but they seem to be obsessed with physical markers more so than any concern for my set of symptoms - despite giving them plenty of information and the word of Dr K. They'd be much happier to write it out completely and continue to send me to psych - being reluctant to go the extra mile to confirm diagnosis. It's very frustrating when you find yourself talking to brick walls - that can drive you crazy! Obviously, being a student I rely heavily on them funding the necessary arrangements. At the very least they will talk to Dr K, it still doesn't help that the bloods continually test negative even if I was only able to test for the few available - not the whole breadth indicated.
At the moment, I am very congested! so hopefully a visit to the ENT will do good. Even when I mention to them the neurology reports indicating 'chronic' sinusitis, they dispute it on the grounds that I'm not pain. I certainly don't want this to be place to 'moan' or complain about my situation, but it is bad. I wasn't diagnosed with anything up until 18 whilst actively seeking professional opinion, before that my behaviour was seen as 'just bad, being lazy or not wanting to anything for myself'.
But before the mention of travel, they were very happy to accommodate the opinions and the need for antibiotics. So honestly, as hopeless, isolated and dysfunctional as I feel at this point in time, hopefully Dr K can convince them the need for follow up.
Still, I would love to clear my sinuses and respond to the medication advised. I can't see much benefit from a system that has followed me with effect for several years now.
If I do find myself traveling there for any reason I will give you let you know, it's always nice to meet family's and people who can share similar experiences. ASD, ADHD, OCD are my labels but they certainly can't tell you the story of my life in the way PANDAS can.
Thanks once again. These next few months will probably be hard, but as for any and everyone on this board, all we can do is fight for our health and search for the answers that actually mean something.
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Hitman3161 got a reaction from ilikedogs in Depersonalization?
Hey Alyssa,
Nice post! I know that depersonalization is heavily linked to excess glutamine activity in specific regions of the brain. IMO, when you take drugs with a very sensitive neurobiological make up your playing a game of Russian roulette everytime. Unfortunately for me, I've experienced depersonalization 24/7 for 3 years. Words don't do the suffering any justice. Whether this has anything to do with chronic sinusitis/URI or any other physical component I still don't know. You're very lucky to get out of it! Your right; everybody's reaction to the drug will be different. Although, I still believe if you treat the underlying sensitivity or problem, you allow the brain at least the best chance to re-normalise itself. All you can do is hope right. lol
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Hitman3161 reacted to MomWithOCDSon in Antibiotics!
Hitman -- Remind me where you're located...in the States? Somewhere abroad?
I suspect that the dose of and composition of the amoxicillin you've been given is going to fall short in terms of desired mental impacts. Not only is the dosage low, but straight amoxicillin lacks the clavulanic acid adjunct that Augmentin includes (amoxicillin plus clav acid), and there has been research regarding the mental benefits of clav acid.
Some PANDAS kids here (mine included) benefitted greatly from Augmentin 875 mg. or, even more so in our case, Augmentin XR which is an extended release formulation which comes in 1,000 mg. tablets. The advantage of the XR may be that it stays active in the system longer given that cellulose component which allows it to distribute more slowly, but if I recall correctly, the straight Augmentin 875 mg. contains a higher clav acid component, which might be why your consult suggested this. I know there's a thread or two here on the forum regarding this, so you might run a search for "clav acid" or something along those lines and see what you find.
As for the gastro-intestinal impacts, yes, I think those will fade over time as your body adjusts to the addition of the abx. I would add a probiotic or two, if you haven't already, to help repopulate your gut flora and keep things from getting off-kilter there. This might be another vote for the XR formulation, too, since the entire dose won't hit your system at once.
In terms of feeling the effects/impacts, it really does vary. My son was entirely non-functional at the point that we finally got access to abx for him, and he was markedly improved within 48 hours of his first dose; however, again, he started at such an incredibly low point, almost anything would have been an improvement at the time. In his case, return to full, up-to-speed cognitive function was a longer, slower process (sorry); the lift of the brain fog, improvement in executive functioning, return of clear "normal" speech patterns, etc. were a slow, gradual result. In his case, I attribute that to the duration of time for which he suffered before we got meaningful help and the need for the inflammation to be halted and reduced, healing of the blood brain barrier (BBB), etc. Why I think it likely that, given the right abx at the right dose, you are likely to "feel" better within a relatively short period of time (mood lifting), I suspect it will take a little longer for the brain fog to clear and your cognition to return in full.
Sorry you're dealing with this but I wish you a speedy recovery!
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Hitman3161 reacted to bws1565 in Does a positive 41 band on Lyme's test mean you have Lyme's di
Wondering about your OspC. To quote Dr. Horowitz, "Borrelia specific bands reflect outer surface proteins on the surface of the organism that are seen more often in Lyme disease than in other infections. These bands include the following five proteins, each with different molecular weights (31, 34, 39, and 83-93) If any of these bands are present on a western blot, there is a high likelihood that the patient has been exposed to Lyme disease, especially with the right clinical symptomatology........."
He also believes that "Lyme disease is a clinical diagnosis, and lab results serve to support the clinical diagnosis"......
Basically, a negative blood result would not indicate no Lyme.
Also read in Cure Unknown, about the most accurate lyme indicating outer surface proteins that were removed from the lab testing, because of a trial to produce a vaccine.. and if these proteins were used, vaccinated persons would always test positive, even if no lyme were to be present. I don't know which ones they are though.