Hitman3161

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

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?

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.

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

Just a quick note to add : Amoxicillin comes from a family of antibiotics containing the beta lactem ring - a core structure residing within the chemical composition that dictates their mechanism of interaction. Their primary mode of action is to inhibit or interfere with the biosynthesis of the outer cell wall, attaching to its surface and destroying the bacteria in question. As such, they are indicated in the treatment of both Lyme and Strep, but may not be as effective in treating certain other types of co-infection. Mycoplasma in particular doesn't possess a cell wall so isn't nearly as sensitive to that class of abx, but does tend to be responsive to the tetracycline class. The above is only to provide a little information on how amoxicillin basically works. As Jan said, treatment is a very complicated process dependent on so many variables including but certainly not limited to the number and type of infections present. Your best bet would be to see an LLMD, who is also well versed in PANDAS, and who can make a well informed assessment based on the clinical picture. Hope this helps, and best of luck!!

Also, just to quickly add I have added a probiotic, to be taken two hours after every dose of amoxicillin. The problem is that it's apparent that seven days won't be enough and a prophylactic dose may be required. Would doxycycline be an adequate substitute? I have read that tetracyclines (particularly minocycline and doxycline) are highly effacious in penetrating the bloodbrain barrier and exhibit strong neuro anti inflammatory properties. I know they are indicated in active neuroboreliosis and mycoplasma infections, but would they they be as effective in the treatment of PANS/PANDAS? As I have a plentiful supply. Thanks once again.

Hi MomwithOCDson Thanks for such a detailed and informative response. Unfortunately, I'm in the UK where PANDAS isn't universally regarded within the mainstream medical community. Treatment is even more difficult due to antiquated guidelines and lack of awareness. My phone consultation was with Dr Kovacevic who agreed that the prescribed dose was too low, and who made the pre-emptive suggestion of 875mg Augmentin. Although, I can not fault my G.P. Despite being unaware and inexperienced with the concept of PANDAS, he made kind referral and was very open minded and interested in learning more - always the signs of a highly competent Doctor. Still, it is intensely frustrating feeling so stuck, I just want to make some progress. The next stage is a T&A and then with some luck IVIG. Although, I may have to travel, I'm unsure of whether or not I can do this state side with Dr K if all fails over here. Either way, I'm 24 and really don't have much time! Thank you so much for the post, I could emphathise so much with the symptoms. It was very ascribing to the fact that this living can be treated and ver much accounted for. Very reassuring indeed!

Very recently I received an 'antibiotic challenge' reccomendation as a diagnostic measure for PANDAS, Augmentin 875mg (14 days) was recommended from a private consult. Henceforth, I went forward to my G.P with an honest account of suspicion for PANDAS as well as the possibility of active infection(s)- relating to sinus and chest. With some skepticism I managed a kind referral but only a 7 day course of amoxicillin 500mg - 3rd day in. My question is : Is this likely to be effective or sufficient in relieving or indicating my condition? I've have noticed some minor side effects including stomach cramps and tiredness, Will these abate? Also, how long until the therapeutic effect becomes noticeable? Of course, I'm hoping for a positive response to the drugs. I've have experienced many disabling neuro-cognitive effects during flair up periods, but have read much about the anti inflammatory properties of antibiotics which was also explained to me during consult. Should standard amoxicillin be enough? Thanks for taking the time read. If you read my other posts you may get the overall picture. My most troubling symptoms are related to cognitive dysfunction - I'd do anything to reverse them . Any experience or advise is much appreciated.

DreamingPanda, you've described it perfectly. It is probably the most troubling of all my symptoms, and I haven't seen hardly any referenced publication of it with regards to pandas. Like you, it tends to 'come and go' with a wax and wane quality. I've heard some people say it can be a sign of behavioural regression - a hallmark of pandas- but this seems very unlikely in my case. Lydiasmum, I can't advise for sure by any means, but I hope that in your case that seems more likely. You also mention blocks? Paucity of speech is listed as a symptom, if this is the case the speech disfluency should hopefully resolve in time with appropriate care. Wishing you all the best! The problem is PANDAS is a very specific diagnosis, so you know exactly what your dealing with, this is always desirable. PANS; on the other hand, is a non-specific descriptor for a type of AE, which really leaves us in the dark. I've tried everywhere to find at least one case study connecting pandas to speech impediment but I can't. Again, I'm in your position with no favourable explanation absolutely crapping it. Although, IMO I honestly believe your case can be explained as PANDAS, in taking into account age and regression. Anyhow, It would be awesome if some more people on here could come forward with similar symptoms. It would definitely help to put my mind at rest!

Spot on. You are totally right the OspC is highly specific for lyme, making things a lot more uncertain than would have hoped. Although, I did have a CD57 killer cell count which fell within normal range suggesting my immune system wasn't being suppressed due to active borrelia infection - this would be the only reason I could think for a false negative reading. If Lyme is there - I hope not - it makes everything horrendously more complicated. I must admit the clinical picture is more fitting! I've had periods of complete lucidity before reverting back into a stuttering mess. Following Dr K's advice, I guess the best bet would be to see the response to antibiotics. That should serve the best indication as to what's going on. Makes you wonder though, the extent of clinical overlap between Lyme and PANDAS/PANS.

Hi Bws1565, I think band 41 commonly appears as a non-specific marker for lyme, as it can cross-react (or is present) with other spirochetes (coiled shaped bacteria). Reactivity to band 41 alone would not be enough to indicate lyme, it would only signify the presence of the protein marker responsible for forming the mobilised portion of any spirochete i.e its tail. This is my understanding at the very least. Although, it obviously shows something's there. I've heard stories of people not testing positive for other bands until abx treatment has started - in the case of an eventual Lyme diagnosis. I think there are quite a few asymptomatic carriers of band 41 out there in the general population, so it's not deemed as important as other bands. Having said that, it would still be interesting to know what that band is a part of exactly?

I've always wondered what a reactive +41 band (IgG) meant. In my case, all other bands with exception to undetermined ospC (IgG) came back negative. I'm aware that +41 (IgG) represents previous exposure to spirochete bacteria of which there are only 3 known forms. But if you rule out lyme and clymidia, with +41 being common a feature of people symptomatic for PANS, what could it be? My neuro-cognitive symptoms are quite severe and clinically most resemble lyme. I've been given a preliminary diagnosis of PANDAS by Dr K. Although, I have yet to find any clear laboratorical markers which is a little disconcerting to say the least.

Hi DC24, Thanks for your show of support. No, I haven't managed to work on my glutamate levels, although I have suggested this idea to a psychiatrist who simply won't accept it. The theory has been spearheaded by peer reviewed journals and is currently part of the treatment protocol at a very specialised clinic in London. But again, there is no general consensus on recommended treatment. The condition is often ignored and very much under appreciated. Your right; they're not exactly the same. Although, depersonalization can often accompany schizophrenia as a symptom showing that they can share in part, common etiological mechanisms. To be honest DC, I hope I can better just as much as I hope you do. Hence, I'm praying that I respond to PANDAS/PANS treatment. That's all you can do at my stage. 🙏

Just to add because of the intricate nature of depersonalisation: I've dealt with a ridiculous level of cognitive impairment over the last 3 years. It's very hard to imagine that I was once a high achieving A level mathematics student. The unrelenting brain fog, lethargy and memory impairment has hampered me beyond belief. Still, I'm not sure if this is associated with the underlying symptoms of pandas/pans or indicative of a much more severe illness like schizophrenia. It's a horrific position to be in. I've found others who have done much to advocate for awareness of depersonlisation but none have described a previous loss of intellectual function. I feel stupid to be honest, I've lost so much. I don't so much have any positive symptoms of psychosis, but at this point I feel pans/pandas is my only hope at finding a long standing explanation to a very isolated and misunderstood 24 year old guy. You'd also never believe the girls used to love me. I have no idea what's happened, I just pray I find a reversible alternative to a life sentence of schizophrenia. But im sure and very glad your not as bad off as me, I have no one and nothing really. :/

Alyssa, I'm in nearly the exact same position. I have a retrospective diagnosis of OCD and ADHD. However, It does very little to explain the sudden acute exacerbations of absolute and total dysfunction. Unfortunately in the past, I haven't been able to hide my situation very well or even explain it. I'm 24 and study mathematics at uni, but there's very little chance of maintaining this position unless I can get some solid results fast. I've only just recently consulted with Dr K who's managed to tie the pieces together and suggest a possible diagnosis of PANDAS/PANS. He's provided a letter to my G.P (UK) with the recommended diagnostic and treatment protocols. I just hope I see some follow through. At my age, going on so long feeling so misunderstood, I'm worried about permanent brain damage. I know everyone's different. I hope you things get a lot better for you, keep me posted on your progress. All the best.

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

Hi Bws1565 Thanks for your input. I'll definitely look into ammending possible deficiencies to stimulate my appetite again. I was just wondering if this was a common but atypical occurrence in PANS/PANDAS? I know that a major criterion in diagnosis is anorexia (restricted food intake), but is an underlying psychological process absolutely necessary to meet this criterion?

BTW no offense to people who smoke weed intended. I really did get wound up with the wrong crowd though. The term "stoner" couldn't be more complimentary in their case. Just an awful mistake when I consider the innate vulnerabilities I had though. Only wish I could turn back time :/

No problem, and the very best of luck!

I experienced this during an acute exacerbation of OCD and regression - stupid me decided to hang round with the "Stoners" and ingest a ton of weed. It was the single biggest social mistake I've ever made. Ever since then every waking moment of my life has been enveloped in a never ending Fog; a head full of cotton wool! Depersonalisation is usually accompanied by an over consciousness of the self, on the self. Hence, talking about it really only serves to intensify the feelings of detachment even more - believe me on that one! It's horrible, I know. In my case at least, I have no idea if it's determinant on an irreversible physiological change or just my brain over-killed from a traumatised mind. I hope you make a full recovery. It was always my belief that if you could find the root cause it would just dissipate - that's the dream - but its anyone guess really. Perhaps treating your Pandas will throw some light on the issue. Afterall, it would be fair to say that normalisation of brain chemistry can only be attained in the right conditions. Depersonalisation for all intensive purposes is a symptom - very rarely does any 'disorder' exist as a pure stand-alone entity. On a side note - I have heard some anecdotal reports suggesting that lamotrogine can significantly reduce subjective feelings of depersonalization by inhibiting the release of the neurotransmitter glutamate in the prefrontal cortex. But again, this may only be specific to reversible effects of ketamine intoxication. IMO Depersonalisation following such a chronic course would be more likely due to an intrinsic inbalance precipitated by a range of neuro biological factors. As it remains, no "gold standard" regulated treatment protocol exists. With all that opinionated 'headache' out of the way, I really hope you find a resolution. Best of luck!

Hi All, I have a quick question regarding anorexia presenting as a possible symptom of Pans/Pandas. My anorexia appears to be non-specific, i.e not fuelled by any underlying psychological motive. Is this presentation typical of Pandas/pans? I've heard of the classic type associated with body image distortion - nervosa. There is also a type characterised by a "fear of choking" which I'm sure is relevant in the context of OCD. But for me there seems to be no underlying reason, it's as plain as simply going off my food. It sounds non-sensical; if anything I have a fear of looking too thin. although, there is no appetite during a symptomatic phase. Any input would be great. Thanks.

Hi Plum 99, I'm no expert on this topic at all, but in doing some research and reading around the subject, I found a Dr Jory Goodman who is native to the Beverly Hills area. It was his contribution on psychologytoday.com that prompted me to investigate further in the first place. I hope this helps.

Hi Bob, Thanks for your reply. I'm seeing my G.P on Friday, with the hope of re-referral back to ENT. As I'm here in the UK, I did receive an email from Dr Giovannoni who has kindly advised me to see Dr Jeremy Stern in London. Although, at this point I'm willing to give the doxycycline a try, anything to make some progress.

Hi Pik Thank you for your reply. I definitely will read your story. Unfortunately, antibiotics aren't readily available over the counter here in the UK. I do have some doxycycline, I'm not sure if that's of any use. I think Dr K suggested augmentin as a diagnostic measure. He thinks IVIG would be the only real help now. I was also recommended a T&A, but I have no idea how I'm going to convince my PCP for re-refferal back to ENT? It's a tough situation, all I want to do is go back to Uni but the situation just seems so impossible at the moment.

Sorry, just to add my life circumstances are down to years of bad experiences going on with no real support or conceivable explanation. The only physical evidence I have at this point are incidental findings on MRI showing chronic sinusitis, mucous retention cysts, and inflammatory fluid of the right petrous apex which is allegedly precipitated by previous middle ear infection. I need testing for mycoplasma and Anti-DNase B antibodies as well as a trial of Augmentin, has anyone one else achieved this on the NHS? I fear that because so much time has passed my situation is very bleak! Thanks again.