Adult with untreated PANDAS?

[Sascha100]

Hey, folks. First of all, I want to excuse my english. I'm a german fellow

Maybe I will ramble a little bit but I hope that you will get the gist.

I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a pretty severe sore throat and a cold a few times when I was around year 1,5- 2,5. I asked my mother about that. Don't know if it was step though. As i already said, my OCD started very early with symptoms "not-right feelings", touching, compulsions to get it right (staring left right left right and so on), extreme fear of losing my parents, praying, confessing and a lot more. Can't really tell if this can be still regarded as a "normal" OCD case but what surprises me is that it was pretty intense even early on. And of course it only got worse. I somehow managed to get through kindergarten but looking back now I was always a worrywart and even at that time couldn't just be "a kid anymore". In school my BDD started. It is an OCD spectrum disorder but I really haven't seen PANDAS cases with kids that developed BDD pretty early on as well. By the time of 7 or so I was already totally consumed by OCD and BDD. Was hyperaware of my looks, thought my eyes looked weird and ugly, tried to be in control of my looks, had all sort of weird obsession ( why am i attracted to woman/ why are bodyparts attractive/ do i really love my mother/ do i really like this and that/hypermorality/hyperresponsibility and 1000 more. And i am NOT exaggerating. I really had any f*** obsession you could ever have. It's crazy. 

I wanted to make a really long text but I realized now that it could be summarized as. Having extremely severe OCD since early childhood/ BDD since ahe 6 or 7/ derealization since age 8 or so. The derealization isn't always there but most of the time it is there, even if it is in the background. Having symptoms of executive dysfunction: I get stuck on concepts / thoughts and have a freakishly hard time to "update" my brain. I'm on Luvox 250 mg since 2 years and since I take it regularly and don't drink alcohol my OCD/BDD/derealization have really gotten much much better. 60-70 % improvement. It is really the first time in my life where I actually can enjoy some things and am not always totaly obsessed/fixated/surpressed by worries. Sorry, lots of ramble but I just had to get it out somehow. What is your take on the situation

Love from Germany

Sascha <3

[MomWithOCDSon]

Sascha, welcome to the forum.

My son, here in the states, was given a "regular OCD" diagnosis at the age of 6.  This followed a psychological diagnosis of being a "highly sensitive child" from the age of 3.  When the OCD became clinical (mostly contamination), I tried to get his pediatrician and therapist to help me look into PANDAS/PANs, but they were unwilling.  Plus, at the time, we couldn't establish a clear connection between strep or any other infection and the "bloom" or waxing of his symptoms, so all of our professionals told us to let it go.  When he was 7.5, the OCD came on again with a ferocity that drove us to allow him to be prescribed an SSRI (Lexapro).  He functioned well for another 5+ years until he started to really crumble.  The OCD exploded, and he couldn't function at all; couldn't attend school, couldn't enjoy his games or television or reading.  Everything triggered his anxiety and rituals.

Finally, I found Beth Maloney's book "Saving Sammy" which was an account of her son and his journey through PANDAs; it was eye-opening because his presentation was so much like my son's.  Also, this was the first time I'd seen an account of a person who was asymptomatic for strep but still had PANDAs.  Like my son, Sammy never had a typical strep infection with sore throat or fever, and throat swabs came back negative.  But when they drew blood to test for strep antibodies, both Sammy's and my son's were above thei high end of the "normal" range by a factor of 7!  That isn't always the case, but for us, it was enough ammunition for us to convince his pediatrician to start taking this PANDAs thing more seriously and try treating it.

In the end, my DS was on antibiotics for nearly 2 years, and he was on a hefty supplement regimen, too, for things that were supposed to help beat back inflammation and modulate neuro-transmitters, too, such as glutamate and histamine, which he appeared to have an excess of.  We also kept him on an SSRI, though we would up switching to Zoloft.  Today, he continues with Zoloft and some supplements, but his OCD has been relatively non-existent for about 2.5 years now; he can still get fixated on things from time to time and will revert back to some mini-rituals in times of high stress, but overall, you wouldn't know him from any other college junior.

I think it's entirely possible that your OCD was borne of an infection and an auto-immune response to it, and PANDAS/PANs treatment may help you with it still today.  I would add, also, however, that based on our experience where my son went for about 6 years being treated with SSRIs and therapy alone for "regular OCD" and no medical or immune interventions whatsoever, your road in that regard may wind up being longer and more twisty than it can be for kids who are treated young and early.  Maybe it's because the brain and its wiring gets more entrenched the older you get, or maybe it's because the metabolism and chemistry your body is developing as you grow finds an equilibrium that's difficult to alter, even if that equilibrium is a less healthy one that yields a chronic condition like OCD.

All that said, if you can find a doctor who will help you sort through your medical/mental history and try some medical interventions, I would give it a try.  I, myself, am fairly convinced that there's no such thing as "regular" or "common" OCD -- that most, if not all, mental disorders have a medical genesis of some sort.  And I think researchers are increasingly finding those links, too.  Perhaps medical treatment is all you need to help push that 60%-70% functionality over the line, if not to 100%, at least to a point where you feel truly well.  All the best to you!

[Sascha100]

MomWithOCDSon, 

thank you so much for you response! So sorry for the things your son went through So happy that he's in such a good place now!

Problem is that I live in Germany and basically no neurologist/psychiatrist know anything about this condition here... It's horrible..

Could you give me any tips how I should approach the topic? Any blood tests that can give me hints if I had it?

Sascha

[MomWithOCDSon]

Sascha --

Most of us have gotten a standard immune panel (IgG, IgA, etc.) as out-of-range results here may point to chronic infection driving inflammation.  With respect to strep, you should ask for ASO (anti-streptolysin) and anti-d-nase B titer tests.

You might check a topic thread on the Pinned Threads at the top of this forum called "Doctors Who've Helped Us."  There are a few international families here (Europe, Australia, etc.), so there's a slim chance there may be a German doctor identified there.  Also in that Pinned Threads section are topics with symptom charts, diagnostic tools, etc. that might be helpful.  There are also threads with links to academic papers and other research.  If you have any trouble finding this stuff, message me and I'll help if I can.  You could also message me with an email address and I can send you some of the research I've collected over the years; I find doctors here in the states tend to be more respectful of peer-reviewed research than they do internet forum-sourced information.  In particular, I'm thinking of a research paper out of Turkey regarding adults with PANDAS, and the Columbia University paper with the antibody research in a mouse model.

There are also a number of other forums (PANDAS Network, for instance) that maintain research archives and the like.  I think your individual challenge may be supporting the "adult PANDAS" thing as much of the research addresses only children.  This blog in a U.S. popular (non-academic) magazine ("Psychology Today") addresses adult PANDAS; Dr. Goodman is a California-based psychiatrist who's fairly well known here for his pro-PANDAs position.  In some earlier articles, he advocates strongly for tonsillectomy/adenoidectomy for treating PANDAs (you can probably find those pretty easily on line).

https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find

Here's a link to a recent academic paper on adult PANDAS:

https://www.researchgate.net/publication/223716976_The_question_of_PANDAS_in_adults

The International Obsessive Compulsive Disorder Foundation (IOCDF) is a highly respected institution, and they've begun to incorporate PANDAS programming, research and assistance into their programs and mission.  Here's a link to their page regarding PANDAS:

https://kids.iocdf.org/?s=PANDAS

In the end, all of these, plus some additional research you can find would probably be good information to take to a doctor's appointment with you; still, if PANDAS is entirely unknown where you are, you're likely to need a fairly open-minded doctor, one with a true sense of intellectual curiosity.

Failing that, there are at least a couple of doctors here in the States who will do telephone and/or Skype consults, though I'm not sure how helpful that would be if they can't actually prescribe treatment for you over there.  You might reach out via their web sites or email, however, and see if there's anything to be had there.  I'm thinking of Dr. Trifiletti and Dr. Kovacevich; I believe Dr. K has actually treated a case or two of adult PANDAs here in the States, but he is European, and I believe he still practices to some extent in Europe, as well.  Both of these doctors appear in the "Doctors Who've Helped Us" thread I mentioned earlier, but here are links to their web sites:

http://pandasinstitute.org/

http://webpediatrics.com/practice.html

Good luck to you on your hunt!

[Sascha100]

MomWithOCDSon,

I am so dearly thankful for all your insights! I finally found someone in Germany who seems to be pretty knowledged in Pandas and has also given a lecture about the topic. He lives pretty far away from where I live so I contacted him and decribed my situation to him. He answered. This is the translation of his email: Hello, Sascha,

First, there is a more precise diagnostic needed, at the family doctor at a specialist. I suggest to undertake some investigations. These are the following: Blood sampling and determination of ASO, AntiDnase, CRP, iron, ferritin,  copper, ceruloplasmin, differential blood count, as well as antibody titer against borrelia, chlamydia, mycoplasma pneumoniae, bartonella,lues,herpes simplex virus, measles, mumps, early summer meningoencephalitis, interleukin-6, tumor necrosis factor, igA, igM, igG quantitative. Head MRI. Helpful would be spinal tap. Do medications work?

This was the mail, did my best to translate it. Does this sound like a good start? I'm a little confused that I need antibody titers against so many infections. Maybe to rule out any possibilites? Should all those tests come up with something if I have untreated Pandas? I don't really get the idea that my strep titers should be elevated or my antibodies  lower? if I don't have any infection at the moment? Sorry for the rambling and all the questions..

Tommorow is the blood sampling. Wish me the best.

Sascha 

 

Edited April 16, 2018 by sascha100

[MomWithOCDSon]

Good luck, Sascha!

Yes, it sounds to me as though this doctor is looking for an underlying infection or, at a minimum, looking to rule out underlying infections out.  I think this is a good place to start; it's where many of us started, as well.  But you're also right in that sometimes these blood tests do not result in any definitive finding that might explain your symptoms or clearly point toward PANDAS/PANs.  At that point, the MRI and/or the spinal tap might become necessary as they can reveal issues that the blood tests may not. 

I think the doctor is inquiring as to whether medications work for you as there are some schools of thought that say if psychiatric medications (such as SSRIs) alleviate your symptoms, then what you have is NOT PANDAs but a truly psychiatric-only illness.  I would be careful in my responses to that question, especially until you have a better sense as to where this doctor is coming from.  While many of us have experienced some relief of the symptomology through use of these psychiatric medications, the reality is that it took the medical interventions (like antibiotics, IVIG, etc.) to get to the underlying genesis of the illness, rather than merely treating the symptomology.  So if this is a doctor who would dismiss the possibility of an underlying medical illness were you to acknowledge that taking an SSRI made you feel, say, 40% better, then you might want to keep that information to yourself for a bit and focus his/her attention, instead, on your physical symptoms and treatment.

Some doctors accept a finding of high strep titers, even if absent any other strep symptoms, as indicative of possible PANDAS; this would go for other titers, as well.  Abnormally low titers, meanwhile, might point to an inefficient immune system or lack of adequate immune response, which could also account for some of your symptoms as your body may be left as inadequately defended against problematic microbes like strep.  Immune deficiencies are, frankly, more readily understood and viewed as treatable, in my experience, than is hyper-immunity (high titer counts).  Either way, information is good armor for facing what the future holds for you in terms of treatment options.

WIshing you well with the testing and looking forward to hearing about what you find!

[Sascha100]

MomWithOCDSon,

Again, I am so thankful for you and your advice. I guess I portrayed the topic quite accurately to the doc and told him that meds only help to a certain extent, to keep the OCD at bay. I get the gist of what you are saying and I want to keep the focus on the physical symptoms. The doctors research is about" Psychoneuroimmunology, schizophrenia, depression, movement disorders, Tourette research, global mental health"

Today, I visited the house doctor but he told me those tests are way too expensive and outlandish for such a small office and that I should see a neurologist in a bigger clinical centre. So i called and said I needed some bloodwork and they immediately shut me down and told me that they can't do those tests. Maybe I should see a immunologist? It's pretty hard here in Germany to get those blood work when the docs haven't even heard of pandas and look at you with a slight glaze of disbelief...

One last question: My response to Luvox seems to be extremely weird. At the beggining, it seemed to work quite well (at least the OCD was better controlled, felt more stabilized) but after I went out one night and got really drunk it stopped working for at least 6 weeks really well. Then it stabilized again and after another hangover it seemed to stop working for even a longer time. (3 months or so to feel slighty like I felt at the peak.) Furthermore, I took creatine for a while ( i go to the gym quite often) and at this time it seemed to stop working full force as well. I know it sounds really strange but it seems as if any slight deviation totally screws up the effect of the medication. After my last 2 hangovers it didn't work at full force for almost half a years. And this isn't some kind of placebo effect. Sorry, rambling again. Any clues why this can happen?

Sascha <3

[MomWithOCDSon]

Every SSRI works differently to some degree, and that's why some work for some people but not for others.

Via Wikipedia, you can pretty easily find the pharmacology of most drugs; here's the page for Luvox (Fluvoxamine)

https://en.wikipedia.org/wiki/Fluvoxamine

If you pay attention to those "binding receptor sites" ("Binding Profile"), you'll see the brain receptor sites for which any given SSRI is designed to impact.  My guess would be that your alcohol intake also impacts those receptor sites, potentially over-burdening or "frying" them when paired with the Luvox intake as well, and it takes some time for them to repair and work properly again.  It's also possible that with repeated "injury" via intake of both the SSRI and alcohol combined, receptor sites burn out permanently and the drug loses efficacy for you.  Possibly one of the reasons ALL SSRI instructions tell you to avoid alcohol when taking them.

I know it probably lacks realism, but given as alcohol is a depressant, with or without SSRIs, drinking is probably not your best move.  But I get that having a quality of life is important, too, so you just have to be aware of the possible results.  You might talk to your doctor about transitioning to a different SSRI -- one that relies upon a different combination of receptor sites, and therefore might be more efficacious for you now.

As for getting the testing, yes, I would imagine that, particularly with respect to the MRI or spinal tap/lumbar puncture, that testing would require some significant physician input/recommendations before you could have those done.  The blood testing, though, I think is pretty standard for the most part and shouldn't be all that big a deal -- at least, here in the states, it wouldn't be.  Can the distant doctor connect with your local physician and make the recommendation, maybe explain his reasoning a bit, doctor to doctor, so that your local guy feels as though there's another professional voice in the mix?  You can try seeing an immunologist, but again, even here in the states, many of them are either entirely unfamiliar with PANDAS/PANs, or they dismiss it as some hoax being perpetrated upon vulnerable families. 

Again, I would suggest getting your hands on some of the peer-reviewed research on the topic (via those online resources I suggested earlier), downloading them, and taking them to a local doctor who can help get you the testing you need.  With some formal documentation of this sort of autoimmune condition being recognized by peers, a doctor who cares and is invested in staying "current" will at least give them a look.

[Sascha100]

I take all your advice to my heart, thanks again! Just one question left. 

My ASO-titers were low, <20. I know that they don't rule out anything. But I really don't understand why they should be elevated if I have developed Pandas in my early childhood,  later on probably had some flares and now haven't had an acut strep infection in the last months or so. Isn't it totally normal that it should be low in this case? That's why I don't understand why all those test should point towards anything if I haven't suffered a flare in, let's say, the last 6 months? Or are those antibodies permanently out of whack if I suffer from Pandas?

Sascha

[bobh]

Our son's ASO titres were also low, but we still got a PANS diagnosis.  PANDAS is a subset of PANS.  PANDAS has strep as a trigger, while for PANS, triggers could be other infectious or environmental factors (such as mold).

Some PANDAS kids with strep don't show typical symptoms (such as a sore throat) - this is what MomWithOCDSon explained was the case for her son, and Sammy in the book Saving Sammy.  So, it could be that you don't have strep and the reading is normal, or if you do have strep, your immune system is not responding to it (as would be the case for strep carriers, I believe).  But with PANS, there could be so many other triggers, such as mycoplasma, lyme, mold, etc.

I'm afraid that investigating this properly is a long road.  It just would have been shorter if your ASO was high.

[Sascha100]

The things is I know I had strep a multiple times growing up, don't really know if it was treated with antibiotics, if so, the course was very short every time. The last time I definitely had strep was 5 years ago when I suffered from a severe Pharyngitis. I was treated with antibiotics for a few days, looking back I can't tell if my OCD got better in those few days. 6 years ago I suffered from myocarditis (heart muscle inflammation) and was also treated with antibiotics for, don't really know, maybe 10 days. So I guess it isn't that strange that my titres were low..

Again,  maybe I suffer from regular OCD/BDD, but the symptoms point towards another direction

[Sascha100]

Just wanna add

this. Its the lyme titer. Bmpa 39 is positive. Isn‘t this band 39 and very lyme specific? The text below says that fresh lyme disease cant be excluded. Longer existing, clinically significant infection highly unlikely. Recommendation: if there are specific clinic signs ( erythems migrans/ multiple erythema, Bannwarth Syndrome) there is therapy indication needed without distinct serology.                 Any ideas on that? I am 99,9 % sure I wasnt bitten by a tick in the 8 years or so.. 

[bobh]

Interesting to see a German interpretation of lyme.  Typically, you need other positive bands (3 total according to IGenex, 5 total according to the CDC) to have serologically indicated lyme (you have only one band that is positive, #39).  But some get a clinic diagnosis of lyme (meaning, from symptoms only, regardless of these bands) - as is  hinted in your translation.  Others argue that these bands may be negative if lyme has been in the body for a long time.

I think that it would be difficult to know for sure that you haven't been bitten by a tick when you were young, and then if it was long ago, then it may not show in these blood tests.

If you are worried and want to chase this further, there is a German lab called Armin, that does a different type of test for lyme. 

[4Nikki]

Most have experienced not being able to find a pandas doctor so your not alone it took us over 4 years to find one. The specialist doctor that gave us the most and appropriate support was the psychiatrist doctor. He did his stuff and ruled out all the mental stuff and then pointed us in a direction. It’s a long process. If the doctor didn’t get it, we moved on. If it’s not obvious, I would Definitely see a Lyme doctor. From there they can point you in direction where you might have better success. I would suggest putting a diagnosis of “pandas” in the back of your mind and use tack toward getting the professionals to come to a diagnosis that works toward appropriate treatments.

[Wombat140]

Hello Sascha, how are you doing now?  Have you had any success getting the other tests that Dr K wanted?  I am in the UK and I do know of two labs in London that do many of the type of tests involved with PANS: http://www.biolab.co.uk/ and https://tdlpathology.com/.  I can't remember whether they offer the specific tests you mentioned but I think it's likely they have at least some of them.  There are lists on their websites.  How it works is you send them the appropriate type of blood samples by post and they analyse it and send you the results.  So if your doctor would agree to draw the blood for you, they could do the testing and then send the results to Dr K for him to look at. 

I think that a lab in England should be close enough to you that the blood should still be fresh enough when it gets to them.  Ask them first, of course.  But Armin in Germany were happy to test my blood (for Lyme disease), so it seems reasonable that Biolab could do yours!  :-) 

I agree with MomWithOCDSon, definitely show your local doctors Dr K's letter, or get him to write to them.  They might be more interested if you prove that a real doctor is asking.

Good luck!  Let us know how you get on.  Oh, and I made this thread a long time ago about treatment options outside the USA, there might be something useful to you there that I've forgotten or you might want to add something you've found to it yourself: https://latitudes.org/forums/topic/24626-treatment-options-in-britain-outside-america/