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Anyone else with PANS/PANDAS?

pibee

Senior Member
Messages
304
In 2013 I first heard about Lyme, mold etc, before I was informed about ME, and what it seemed to me from start as very highly likely is that I had PANS from very early childhood, my brain never functioned completely in mental or cognitive ways and the flares were obviously related to immunity, like i flared during Spring allergies etc etc... (I didnt think it's PANDAS at that time, PANS = triggered from infections other than strep, I thought bartonella and lyme at that time).

I was half convinced I have PANS, until in 2016 I also had very clear PANDAS symptoms triggered by whoknowswhat (many factors), I got 1st time ever tics, then blinking, and chorea movements.

Speaking to some PANDAS mothers, the overlap in symptoms is 100%, esp w Sydenham's chorea which is actually some form of PANDAS (i dont understand the difference yet).

Of course, unlike those kids I have much bigger fatigue component and PEM etc so think I have both, and POTS and Sjogrens.

But often I see so many similarity in symptoms -brain fatigue/fog/cognitive impairment, and wonder if it's in my case at least the same disease.

Anyone else with story like this or similar?
 

pibee

Senior Member
Messages
304
Update.
As I understood the Cunnningham panel is sometimes used by ME doctors to check for autoimmunity, so I'm surprised nobody has PANDAS. As a comorbid condition

As for my case, I am more sure of PANDAS diagnosis, than of ME.

POTS, PANDAS, Sjogren's and Hashimoto are confirmed in my case. (with PANDAS being clinical diagnosis but with all specific symptoms -tics,chorea, blinking, occuring first time 2yrs ago at the age of 28)
But I have PEM, hits in head if I overdo activity (reading, talking...). I got this after 19 days of IV Rocephine in 8/2017 (it helped a lot at first, later i think destroyed my already weak gut) and before in 12/2016 while I had high fevere I experienced first 'hit' in head when I was reading. Since 8/2017 regular.
In 4/2018 I took thyme essential oil and it reversed maybe 40% of symptoms I got since 8/2017.
then recently I took 2 days of azithromycin and it reversed another 20-30%.. so now I am back to 70% of my pre-8/2017.
It doesnt affect [much] my POTS, which is expected considering subtle neuropathies i'm feeling all over body and enormous amounts of antibodies from CellTrend.

I'd guess after all that antibiotics, like thyme, azithromycin, ceftriaxone, in my case are mostly needed as prophylaxis, in a low dose, against strep.

Still not convinced PEM is not strictly ME thing but seems there are exceptions?!

As POTS and PANDAS are frequently mentioned as comorbid conditions, .. is confusing how nobody else has PANDAS here... :sluggish:
 
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Dmitri

Senior Member
Messages
219
Location
NYC
You definitely aren't alone here in having suspected or diagnosed PANDAS. @CallieAndToby who posted on this forum a few years ago had extensive evaluations for it and was the one who originally introduced the concept to me.

I finally saw a PANDAS-knowledgeable neurologist in April, who unfortunately won't be available for a follow-up for the next few months. I was told that my case appears more complicated than PANDAS due to so many varied symptoms all over my body, including GI disturbances, autonomic dysfunction, various types of neuropathic pain, etc. I got the strep-related blood tests done but they came back negative.

The trigger of most of my symptoms, an antibiotic given during early childhood, brought with it the "mental" symptoms as well. According to everyone, I became unrecognizable in my behavior, turning into a zombie with outbursts of rage. I had, and still have, OCD, brainfog, racing thoughts, mood swings, irritability, depersonalization, constant background anxiety. I suspect PANS over PANDAS due to its more generalized causation, but my throat is always sore.

I have positive ANA of 1:160 but ENA, Mayo paraneoplastic panel, GAD65, anti-NMDAr autoantibodies all come back negative. My mother has sjogren's and lupus with similar symptoms to me overall, except she doesn't have OCD and most of her symptoms started during adult age. From what I gather, you got ill during childhood too? Perhaps the presence of OCD depends on age of onset?

I definitely should mention that after I started taking LDN (low dose naltrexone), my compulsions to perform OCD-related rituals have reduced to a mild degree. My obsessiveness, however, is still through the roof. The compulsions are still there, but they're easier to ignore.
 

pibee

Senior Member
Messages
304
Wow. We're quite similar.
Yes I had symptoms from as early as I remember. From physical I remember flu feeling, and occassional leg pains, feelings like my nerves in legs are not really properly working but it was all subtle. And from psychiatric it was moderate anxiety, OCD-like (not classical OCD but did qualify for OCD), delayed sleep disorder, rages. Biggest issues even then, next to anxiety, were visuo-motor related,.fine motor skills etc

When I was about 5 I had some very high fever and my mom says I've changed since then I got extremely afraid of her. Not sure if symptoms were present before.
I remember as 4 yr old also some visual processing issues, as 7 year old when I was starting a school I remember my left ear was borderline in hearing... which is strange as I have constant ear pain last 10 yrs.

I had also mild apraxic symptoms as kid (trouble tying shoe laces). All was not easily spotted because I was on both sides of the spectrum, neurodevelopment problems signs that would only better psychologists realize or careful parents, and gifted in school and sports, which is not rare as well. So being a very good student hid the disorders.

Early signs of hypothyroid. From age 10 it was obvious hypo.
All my symptoms would flare most in Spring (allergies now i am sure) altough I never had typical allergies but mental symptoms and fatigue would flare.

Then in teenage yrs I had full blown hypo it mostly reflected with mood issues..
Then when i was 19 i had .. what i now believe was encephalitis..... my left face went numb, slight bells' palsy, my psychiatric symptoms got SEVERE, and thyroid. I was dg Hashimoto w TSH 15, and on drugs since then. it was horrible until 2013 i switched to Armour which basically saved my life (i was very mentally unstable before it).

but then even more autoimmune (?) flares like my numbness spread to right side of face.
In 2014 was given antibiotics had severe herx reaction and got 100s new physical symptoms
Since then physical are mostly gone or very reduced except frontal headahe (think this fits Daily Persistent Headache which is considered by many autoimmune). All fits.
then 2016 first tics, chorea movements... and blinking in 2017. This is rare but fits /confirm Sydenhams' chorea /PANDAS diagnosis
btw SC is more common in females, while classical PANDAS in males, so this makes it likely. Girl i know w SC doesnt even have OCD, although i do - but milder than stereotype PANDAS.. my OCD, and especially depersonalization went away w antibiotics, it took a lot but it did (most helpful thyme essential oil).

Fine motor skills are my main issue and that's another thing that I found only in Sydenham's chorea...

I spoke to 2 PANDAS specialists both agree I have it. I tested strep only 1x in life, recently ,after tons of antibiotics , not during flare, it was negative (ASO, didnt test Anti-DNAse yet)


My ANA was speckled in 7/2017 (before my extreme worsening, though) and ENA showed positive SS-A.
CellTrend was 8 out of 9 positive.
tilt test is positive, my HR goes from 60-70 in flat up to 165 on tilt.

My family history is full of rheumatoid autoimmune diseases like Sjogrens , RA, Hashimoto etc etc.. almost everyone has 2 .. but I am only one with neuropsychiatric complications


I am not only PANDAS as well as you can see, POTS as comorbid .. ME is the missing piece, whch I'd like to keep missing lol
 

pibee

Senior Member
Messages
304
p.s. what confuses me a lot is that from my dad's side of family I have Sjogren's (aunt sj/lupus, my sister also and me)... while my mother has fatigue that seems very mild ME/CFS.. she has Hashi too but her fatigue is def on ME spectrum.
This makes it look like I might have both illnesses which is again very unlikely and very bad.
 
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crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Wow. We're quite similar.
Yes I had symptoms from as early as I remember. From physical I remember flu feeling, and occassional leg pains, feelings like my nerves in legs are not really properly working but it was all subtle. And from psychiatric it was moderate anxiety, OCD-like (not classical OCD but did qualify for OCD), delayed sleep disorder, rages. Biggest issues even then, next to anxiety, were visuo-motor related,.fine motor skills etc

When I was about 5 I had some very high fever and my mom says I've changed since then I got extremely afraid of her. Not sure if symptoms were present before.
I remember as 4 yr old also some visual processing issues, as 7 year old when I was starting a school I remember my left ear was borderline in hearing... which is strange as I have constant ear pain last 10 yrs.

I had also mild apraxic symptoms as kid (trouble tying shoe laces). All was not easily spotted because I was on both sides of the spectrum, neurodevelopment problems signs that would only better psychologists realize or careful parents, and gifted in school and sports, which is not rare as well. So being a very good student hid the disorders.

Early signs of hypothyroid. From age 10 it was obvious hypo.
All my symptoms would flare most in Spring (allergies now i am sure) altough I never had typical allergies but mental symptoms and fatigue would flare.

Then in teenage yrs I had full blown hypo it mostly reflected with mood issues..
Then when i was 19 i had .. what i now believe was encephalitis..... my left face went numb, slight bells' palsy, my psychiatric symptoms got SEVERE, and thyroid. I was dg Hashimoto w TSH 15, and on drugs since then. it was horrible until 2013 i switched to Armour which basically saved my life (i was very mentally unstable before it).

but then even more autoimmune (?) flares like my numbness spread to right side of face.
In 2014 was given antibiotics had severe herx reaction and got 100s new physical symptoms
Since then physical are mostly gone or very reduced except frontal headahe (think this fits Daily Persistent Headache which is considered by many autoimmune). All fits.
then 2016 first tics, chorea movements... and blinking in 2017. This is rare but fits /confirm Sydenhams' chorea /PANDAS diagnosis
btw SC is more common in females, while classical PANDAS in males, so this makes it likely. Girl i know w SC doesnt even have OCD, although i do - but milder than stereotype PANDAS.. my OCD, and especially depersonalization went away w antibiotics, it took a lot but it did (most helpful thyme essential oil).

Fine motor skills are my main issue and that's another thing that I found only in Sydenham's chorea...

I spoke to 2 PANDAS specialists both agree I have it. I tested strep only 1x in life, recently ,after tons of antibiotics , not during flare, it was negative (ASO, didnt test Anti-DNAse yet)


My ANA was speckled in 7/2017 (before my extreme worsening, though) and ENA showed positive SS-A.
CellTrend was 8 out of 9 positive.
tilt test is positive, my HR goes from 60-70 in flat up to 165 on tilt.

My family history is full of rheumatoid autoimmune diseases like Sjogrens , RA, Hashimoto etc etc.. almost everyone has 2 .. but I am only one with neuropsychiatric complications


I am not only PANDAS as well as you can see, POTS as comorbid .. ME is the missing piece, whch I'd like to keep missing lol
Damn dude, I'm glad you got into a specjalist to get tested! So what is the plan from here? Do you plan to further pursue antibodies?
 

PisForPerseverance

Senior Member
Messages
253
I had, and still have, OCD, brainfog, racing thoughts, mood swings, irritability, depersonalization, constant background anxiety.
I relate to you.
my throat is always sore.
I got a lot of throat illness throughout childhood and as an adult before I got sick 8 years ago (although better understanding infectious or post infectious autoimmune encephalopayhy as likely what happened to me at 17 with sudden ocd and other symptom onset, I'm re understanding it as I've been sick since then). In maybe 2016 my throat soreness become often, and then all the time. It's not anymore. This got better with iv ozone treatment. I still will get it sometimes though. I still have ocd. So if you want to follow along this thread https://forums.phoenixrising.me/thr...s-to-get-the-care-we-need.84303/#post-2345795 to see if any autoimmunity investigation would help you, please do. I'll be recording if ocd is helped by treatment for autoimmunity. Also if you want to talk strep and treatment for ocd in general, I'd be interested in that.
an antibiotic given during early childhood, brought with it the "mental" symptoms as well.
Why do you think it was the antibiotic? Could it have been the infection? Not challenging you, just curious.
I finally saw a PANDAS-knowledgeable neurologist in April, who unfortunately won't be available for a follow-up for the next few months. I was told that my case appears more complicated than PANDAS due to so many varied symptoms all over my body, including GI disturbances, autonomic dysfunction, various types of neuropathic pain, etc.
Personally I don't think those exclude pandas at all. Neither does my doctor. Check out what I said on that thread about neuroimmune conditions, and many conditions in general, existing at the same time. I have those symptoms too now. The gi disturbance, autonomic dysfunction, neuropathy). I didn't when I got pans. (Or pandas, not clear yet, if it ever will be). Did you have those symptoms since childhood?
 

vision blue

Senior Member
Messages
1,900
Intersting thread. I just posted one on what are the symptoms of auto encephalitis and asked someone to remind me of the name of the panel for neuropsychaiatric symptoms (and i was reminded it was Cunningham). I have new onset symptoms against a very long history that for the first time are arguably neruopsyciatirc. So i just asked for the Cunningham panel as well as the Mayo panel for AI encephalitis.
 

Dmitri

Senior Member
Messages
219
Location
NYC
Why do you think it was the antibiotic? Could it have been the infection? Not challenging you, just curious.


The antibiotic was isoniazid for TB, which I didn't have. It was misdiagnosed. I was 3 years old and the "treatment" that lasted weeks, I reacting badly to it and was never the same after it was discontinued. That's when most of my symptoms began and gradually even worsened despite avoidance of major triggers.

Personally I don't think those exclude pandas at all. Neither does my doctor. Check out what I said on that thread about neuroimmune conditions, and many conditions in general, existing at the same time. I have those symptoms too now. The gi disturbance, autonomic dysfunction, neuropathy). I didn't when I got pans. (Or pandas, not clear yet, if it ever will be). Did you have those symptoms since childhood?

I agree, especially since it's common for autoimmune conditions in particular to occur in groups. I've had both the "mental" and the physical symptoms since this began with the antibiotic. Physical conditions, especially the state of my GI tract, have a huge impact on my OCD and cognitive symptoms. If I have burning and throbbing in my stomach, I feel it all over my body, especially hands and feet, and as a throbbing pain in the face/sinuses. It also makes me more irritable and my body becomes more restless, which means more OCD. Even minor offenses, like an acidic fruit being in my mouth, instantly makes me feel like I've been hit by a truck with a sudden worsening in brainfog.

Since the last post I made in this thread years ago, I received diagnoses of Sjogren's and small fiber neuropathy. I don't think they're enough to paint an adequate picture of what's going on, since I have so many weird symptoms that fit outside the usual profiles of both. I received IVIG for Sjogren's/SFN but it didn't help with any of my symptoms.

Your OCD was sudden onset, but the GI/autonomic symptoms came later? Were they also sudden or did they come gradually?
 

PisForPerseverance

Senior Member
Messages
253
Physical conditions, especially the state of my GI tract, have a huge impact on my OCD and cognitive symptoms.
Me too
I received IVIG for Sjogren's/SFN but it didn't help with any of my symptoms.
Oh no. The progression is to use other immunotherapy if the first one didn't work. Do you know why that didn't happen? Did you have enough of the med? Like was the amount too conservative?
I don't think they're enough to paint an adequate picture of what's going
Neither would explain what happened to you at 3. From what I'm learning, what happened to you is PANS by definition since it's a clinical diagnosis of sudden onset (around 3 months or less I believe, may be wrong, that's for automune encephalitis though) ocd or reduced eating plus a few other of the possible symptoms. Also for the same reason it fits clinically with autoimmune encephalopathy or encephalitis from my understanding, but could be an encephalopathy or encephalitis without autoimmunity. Such as a toxic encephalopathy without autoimmunity. From that drug. Other explanations, I don't know about.
I think three avenues you could look into: Information on PANS from drugs, autoimmune encephalopathy or encephalitis from drugs, and toxic encephalopathy.

What about a PANS doctor who treats adults? And an autoimmune encephalitis doctor who can diagnose clinically based on what happened, maybe find some antibodies or abnormal scans, and hopefully get you treatment besides ivig like plasmapheresis, steroids, or immunotherapy drugs. I posted two autoimmune encephalitis doctors lists from two organizations on that thread, and getting lists from PANS organizations is a good idea. The specialist I'm going to see has experience in both autoimmune encephalitis and in PANS and PANDAS specifically, so that's lucky.
Your OCD was sudden onset, but the GI/autonomic symptoms came later? Were they also sudden or did they come gradually?
I keep saying to people I'll post my symptoms onsets but I don't because I want to add on what's happening now before I do. I will do that soon. But. They both came years later after getting sick again with another autoimmune encephalopathy and ME
 
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