Help with PANDAS

[JonnyEnglish]

Hi guys,

 

I'm new to the forum. My name is Jonny and i'm 25. I was directed to this forum from a foodsmatter article posted on PANDAS.

The reason im posting is to see if anyone can help me with determining if adult pandas or strep is involved in my OCD.

 

I was perfectly healthy until 22 when i was put on antibiotics for 6 months. At the end of that 6 months i started having panic attacks and OCD, developed major depression and i have spent the last 3 years trying to rebuild my life naturally and holistically. More information can be found here through my blog, following an article i published in foodsmatter:
http://geneticallymoreobvious.wordpress.com/2013/05/12/news-update-my-foodsmatter-article-is-published/

at the moment i no longer suffer with anxiety, and i have not had a panic attack in years which is something quite strange to most OCD sufferers.... i literally have zero anxiety, but crippling obsessive thoughts..... zero compulsions. My main symptom is OCD, intrusive violent, suicidal or homicidal thoughts.

 

At the advice of an online friend who has adult strep PANDAS i recently had a blood test.

 

The results are;

 

Anti-streptolysin 'O' titre: 100 units/ml (Nomal range is 50 - 200)

Anti-streptodornase B: 300 units/ml (anything over 200 in adults is significant)

 

I believe this could be an indication strep is involved in my OCD? Athough i recently had a comprehensive stool analysis done which showed up no strep at all in my faeces. Does anyone have any opinion on this? are there any other tests which might be more specific to adult PANDAS or PANDAS/OCD in general?

 

thank you.

 

 

[pr40]

Your questions are way above my paygrade. Perhaps, someone else will chime in.

dr. b takes adult patients as does dr. n. I urge you to make an appointment with either one of them or perhaps both.

there are at least two adults on the forum with PANDAS, one's name is Ophelia, the other is Lauren K. They seem to share at least some of your symptoms. You may want to look at their recent posts.

[Dedee]

Hi Jonny,

 

Terrible thing to happen to a young guy just starting out in life. I will give you my opinion (for what it's worth). I have 3 kids with PANS, one is a strep responder, one is strep and lyme, and the third is Lyme / Mycoplasma / Bartonella. Since you say you got worse after the antibiotics, it's possible that the antibiotics and the illness that you were treating caused a bacteria that had been dormant in your body to be activated. Things like lyme, mycoplasma, bartonella, babesia, and many others can become activated after many years of having no symptoms at all. Physical and emotional stress can do this as well. You should have a more comprehensive work up and be tested for lyme and all the co-infections through Igenex. You should also have a comprehensive viral workup. When you get your lyme results back they should only be interpreted by someone educated in reading those results (LLMD). Do some research on this site on Lyme results and you will get a better understanding on why this is so important. Sorry I can't spend more time posting right now. I'm sure some of the others will jump in. Just want to encourage you to persue more testing. You should not be so miserable at such a young age. Best of luck.

 

Dedee

Edited August 22, 2013 by Dedee

[qannie47]

read your bio....did a linear timeline in my head as I read....you have experienced very little relief in the grand scheme of what is plaguing you. What did jump out for sure was the correlation between wheat and candida. What did they say about anti-streptodornase b which was abnormal? What about micro-plasma infection? Do you take probiotics? Others might not agree, but my understanding of Pandas is that one usually experiences first big episode as a child. Can your parents recall any problems at all in relation to chronic strep issues? This does not strike me as Pandas, (go to webpediatricsmd for more info) but that does not mean that this is not on the spectrum of an auto-immune induced mental health issue. They are finding more and more about the e relationship between bacterial infections/gut issues > autoimmune = mental health problems. However, I don't think I need to tell you this, as you seem very well informed. Also, when trying a new approach to treatment is it possible that you are abandoning something too quickly when it seems to stop working? Sometimes, as with my son, their is a wax/waning thru the course of a healing period.....months......two steps forward, one step back kind of thing with hopefully a light at the and of the tunnel. I only add this thought cause it is clear that you have been thru so much, your mind and body, I can see how that alone would make it difficult to pinpoint...

[mama2alex]

Jonny,

 

I would encourage you to keep reading and posting here. There is a lot of collective wisdom here and people really care.

 

I agree with the posts above, except I do think it's possible one thing you are dealing with is PANDAS. Your Anti-D Nase B is high, so I would talk to a PaNDAS doc about that. Did you have a throat culture? Some people are carriers - they have no physical symptoms, but some do test positive on the culture anyway.

 

Also, has anyone tested you for heavy metals? Do you have amalgam (silver) fillings or have you eaten a lot of fish at any point? Your age group was still getting lots of mercury in vaccines, so I'm sure you got exposure there. I ask because your body can be "dealing" with heavy metals for a long time and then you have a triggering event which starts a cascade of problems leading to a further build-up of heavy metals because the body stops excreting it efficiently. This happened to me after my son was born. In my case it was from amalgam fillings, which are 49% mercury. In your case the triggering event would have been 6 months of abx which probably wiped out the good flora in your gut.

 

With regard to food, have you tried an elimination diet? This is where you eliminate pretty much any food that can cause a reaction/inflammation, then you add foods back in one at a time to see if you react. In your case you'd be looking for a decrease in obsessive thoughts when all suspect foods are eliminated. If you do see a decrease, then you start adding foods one at a time to see if the thoughts come back/increase.

 

Good luck to you. I hope you find an answer soon.