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Hitman3161

All Serum tests so far negative! Please help, disheartened.

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I've recently undergone some diagnostic testing for Pans/Pandas, prompted by a strong clinical history and recurrent URI's including chronic sinusitis and petrous apex effusion. The only problem is with the exception of MRI findings, I don't have a single grain of physical evidence! All tests are coming back negative for ASO, ANA, and Mycoplamsa Pneumonia IgM antibodies. I'm finding this whole process very disheartening, especially in the light of my worsening condition and making progress in finding a resolvable cause and explanation. Has anyone else had a similar experience? Does this rule out the possibility of a diagnosis of PANDAS? As I'm not directly under the care of a Pandas friendly physician in my country, all testing has been initiated privately on my behalf from first principle. But I feel like for such a strong clinical history, I'm making no progress in pursuing an effective diagnosis. Any advise is always appreciated.

 

many thanks 

 

 

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Have you had testing for Lyme and coinfections through good Labs like Igenex? Many adults with Lyme present with psychiatric symptoms. I had recurrent URI's and sinus issues are not uncommon with Lyme either. It's all just a result of the immune system being devastated. 

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Hi Mama2alex,

Thanks for your reply. I did have Lyme testing done at BCA labs in Germany. With the exception of testing positive for band 41 (IgG) and OscP indeterminate (IgG) on the immunoblot, all other results were unremarkable.

The only other inflammatory marker was a high eosinophil count indicated on general blood chemistry.

It's very frustrating indeed, especially when physical findings cannot be accounted for by the lab tests.

Dr K said that he wasn't surprised at my age not to show any serological evidence. He said the most important factor would be response to augmentin. Although, as I'm not state side, I'm finding this very difficult to obtain.

I literally go from 60 to 0 in a matter of days, it's been like this for years. Severe anxiety, intrusive thoughts (OCD), anorexia, behavioural regression, mood swings, withdrawal and cognitive dysfunction. It's like I come to a full stop (no pun intended, lol Haha I had to edit this in).

Jokes aside, at this minute I'm very isolated and wasting away with no prospects. My life has turned into a tragedy. I haven't been able to form solid peer relationships, and my education is in tatters. Before this I was a high achieving student. 

I just feel so hopeless right now, I'm terrified that this can lead to permanent psychosis and irreversible loss of cognitive function. All the while life just passes me by...

 

Thank you for the suggestion though, it's much appreciated.

 

 

 

Edited by Hitman3161

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Something else has quickly came to mind. If the initiating trigger wasn't exclusively bacterial and my MRI findings were caused by other viral infections like EBV, would I still respond to the antibiotic treatment? Of course, I still can't rule out strep as I've only tested for ASO, but has anyone else experienced similar? Or better still improved on augmentin, despite a lack of supporting evidence. 

Dr K mentioned in the telephone consultation that the therapeutic effect of the augmentin wasn't in necessarily clearing the infection, but rather a protective neuro anti inflammatory side effect of the medication. I can't remember the exact theory he outlined,  I just wondered if anyone else can relate or has more knowledge of this?

Edited by Hitman3161

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Hi Gpookie,

They were only incidental findings from last year after a regular ENT consult. At that time I never the possibility of PANDAS was not considered in relation to my neuropsychiatric symptoms. However, they showed the presence of a Mucous rention cyst, inflammation of the nasal and frontal sinuses bilaterally, and an effusion in the right petrous apex. I believe at the time they were looking for a mass, or some structural change that could explain the tinnitus and 'full ear' feeling I presented with. Anyhow, the final report simply concluded evidence of chronic sinusitis and a 'leave me alone lesion' (trapped fluid) behind the right ear, leading me to being discharged.

At that time, I remember the ENT consultant was  unable to understand why the lesion appeared on the right side, but the symptoms of tinnitus and fullness were felt on the left side. Kinda strange lol

Edited by Hitman3161

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You say you don't have a grain of physical evidence, but if what you say above were happening in my PANS kid, there would be (in my mind) sirens a blazing, red lights flashing, and I would be laying out a code 1 emergency action plan.

Chronic sinus infection (I presume that is your situation - have you confirmed?) has had a long history of being associated with neuropsychiatric symptoms, I mean long long before PANDAS or PANS were coined.

While you are waiting for an appointment to materialize with Dr. K, can you convince any local doctor to treat the sinus infection?  Mentioning PANDAS or PANS could be a disadvantage, just get them to get rid of the sinusitis and the mucous retention cyst, whether its bacterial or virus or whatever, it's bad news for PANS symptoms.  Have a look at your tonsils too, and if there are crypts or trouble, don't hesitate to have them yanked, even though it is much harder to recover as a adult.

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Hi Bob,

Thanks so much for your input. I understand you loud and clear; that is the confirmed situation. I do have an ENT appointment scheduled for early August. I will ask them for T&A, and to help clear the sinuses. Although, without context it's a difficult treatment consideration to receive, T&A guidelines in the UK usually advise against it - in the past it was more standard procedure and common practice. It may be a case of finding an 'old fashioned' Dr open to surgical intervention. 

 

Yes, I know I shouldn't expect miracles. My functioning really does go from '60-0' every time, so far I've managed to pick myself up, but I don't how long that can continue. The OCD, anxiety and behavioural regression with every breakdown really has left me a wreck with major peer relational difficulties. 

But again the sooner I respond to any proposed treatment, the sooner I can rule in or rule out another reason why life has become a mess for me these last several years. 

I will update and hope I'll be in a situation to  advise others (through personal experience) in my age group when progress has be made. 

It maybe a case of  'biting the bullet' taking a risk and traveling in hopes that I respond.

Thank you once again. It's much appreciated!

 

 

 

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Considering the difficulty you have coping, it may be too much to tackle a tonsillectomy (assuming your tonsils are in trouble) while your sinusitis is being treated.  There can be a herx reaction from both - the double wammy might be really hard.

But IF your tonsils are a problem, and IF you get a doctor to agree to consider removing them, the appointment may be far enough into the future that it could be postponed if it comes down to bad timing.  So it might be good to still schedule it (if all the IF's are true).  When you do get there, lets talk about abx before and after - from my review of tonsillectomy experiences here on this site, I think abx around the tonsillectomy could be really important.

It is heartbreaking to hear how hard the OCD, anxiety, breakdown and peer relational difficulties have been for you.  How can we help at this distance?  Please do not hesitate to post here, or message me any time.  I am not on here every day, but I will respond.

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I guess when you live with these set of symptoms for so long not being recognised by close others and seeking timely intervention, it would rob anyone of their very identity (regression, personality changes), severe anxiety inevitably leading anyone into a woeful pit of isolation and victimisation in certain circumstances.

At this stage it looks like I'm going to have to travel to Dr K to trial the antibiotics/steroids and IVIG. I plan to do this after the T&A, but being under the direct care of someone who can potentially  get to the bottom of all this is most important.

My only hope is that I truly do respond to the anti inflammatory/ immunosuppressive medication because I think on top of the ASD it would really tie the pieces together and explain the real thats kept me back all this years. Everything would fit together for the first time, I would know what I was dealing  and for all the ignorance in this world I could leave it very much as PANS.

Thank you so much again Bob your support is very much appreciated, hopefully the next few months will give me the answers I need and the ability to get back to college and on with life etc.

warmest regards.

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If I lived in Chicago (which is where I understand Dr. K is), I'd give you a place to stay.  If for any reason you are travelling through Ontario Canada for this visit to Dr. K, let me know (that is where I am).

I have heard lots of advice from people about eliminating chronic infections prior to IVIG.  I'm not well-versed on IVIG, but am hearing that the symptoms can all come roaring back with an infection of significance after IVIG.  Or maybe it doesn't even work with a chronic infection during IVIG.

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On 11/07/2017 at 5:28 PM, bobh said:

If I lived in Chicago (which is where I understand Dr. K is), I'd give you a place to stay.  If for any reason you are travelling through Ontario Canada for this visit to Dr. K, let me know (that is where I am).

I have heard lots of advice from people about eliminating chronic infections prior to IVIG.  I'm not well-versed on IVIG, but am hearing that the symptoms can all come roaring back with an infection of significance after IVIG.  Or maybe it doesn't even work with a chronic infection during IVIG.

 

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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For what it's worth--I get the full ear thing with hyperacussis and it responds to full daily doses of naproxen. You might also try ibuprofen (not at same time) to see if that helps with symptoms while you get to the bottom of it. Also, don't forget to have hormones checked cause Lyme and infections can mess those up leaving you feeling horrible.

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On 22/07/2017 at 11:11 PM, Sirena said:

For what it's worth--I get the full ear thing with hyperacussis and it responds to full daily doses of naproxen. You might also try ibuprofen (not at same time) to see if that helps with symptoms while you get to the bottom of it. Also, don't forget to have hormones checked cause Lyme and infections can mess those up leaving you feeling horrible.

Thanks so much for the advice. I've previously tested negative for Lyme using the BCA labs criteria, which I understand to be very thorough, so I'm not holding out much hope in pursuing that avenue. At this stage there is severe cognitive impairment, but the clinical profile and history most resemble PANS/PANDAS with regards to its characteristics - It also seems that my condition follows a relapse/remitting course. Interestingly - up until yesterday, for the past few months my speech has been muted,  with features of marked paucity and stuttering. Usually, I'm very articulate and can freely express myself with ease - although I've always exhibited selective mutism in specific situations.

 

I'm still lost in the woods with regards to treatment, as I'm waiting for my Dr to return from vacation. However, with a retrospective diagnosis of ADHD and very mild (AS) in fitting with the clinical characteristics of PANS and it's sudden  'acute and extreme exacerbations', I'm hoping that I positively respond to the immunotherapy  with marked improvement/or even curative effect - it's a lot to ask for for I know! 

Yes my head does really feel clogged - I've now developed a cough headache as well. ENT is soon, but I haven't had much luck with them in the past. I'm now really preying that the diagnosis can be validated with positive response to either the beta-lactam abx or steroids.

With such a fragmented healthcare system, pursuing treatment is incredibly difficult, my only hope now is the direct care of Dr K.

 

Thanks so much again though.

 

 

Edited by Hitman3161

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Very sorry for the long, frustrating road. I just thought it worth mentioning that antibiotics (with or without naproxen) is not sufficient to make a dent in many PANS/PANDAS patients (my 10 year old DS included). For us, high dose Solumedrol (steriods) infusions may be key. IVIG is hard to get approved by insurance, though that may also work. Something you could try is taking the pill form of prednisone for a 5-7 day course (assuming you can get a script for it) and see if there is any symptom relief (then again, not seeing improvement is not a clear sign of no brain inflamation - it could be after all these years you would need the much higher dose infusions to see improvement. As a data point, we tried all sorts of antibiotics, plus naproxen (aleve) for our son and nothing worked over approx 3 months; it was at that point that we moved on to high dose Solumdrol for 6 months. He is basically 90% better, the main remaining symptom is inability to concentrate on long form academic stuff (though drs tell us this can also be from the steriods, so we are happy to have recently had what we hope will be the last infusion - our drs recommended 6 months worth of high dose Solumedrol infusions/1x a month, plus amoxycillin, plus aleve FYI)

I wish there were more doctors with expertise on this throughout the world...

One last note, did you ever have joint pain? That is a symptom experienced by many PANDAS/PANS patients I believe, and is an indicator of auto-immune involvement.

Best of luck. Hope you feel better soon.

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