21 Year Old with Severe OCD and ADD (PANDAS)

[Shelds]

Hey Guys

I thought I would start by first introducing myself as I'm new to this forum along with a basic medical history.

When I was approximately 5 years old my parents witnessed me becoming sick on one particular night. They told me that I exhibited a noticeable fever and it was quite obvious that I had a high temperature. On the other hand they never recall me complaining of a sore throat however they do remember that this was the first time I ever showed symptoms of OCD. On that night while having my fever I complained of having a Green Monster in my head and my parents tell me that it was quite disturbing to hear. They tell me that they considered taking me to hospital but at the end they decided that it was best to just hold off and see how I was the next morning. I can't remember this time when I was sick and first mentioned the green monster however my parents tell me the next morning my fever was gone and I appeared "normal".

However even though I don't remember this particular event I definitely vividly remember the Green Monster coming back again around the age of 5-6. He was a crystal clear image and would cause me a lot of pain and anxiety. It would constantly tell me that I was going to get sick from diseases and at the time I developed a strong worry about germs and catching illness. I remember trying to block this green monster image out of my head by covering him up with pieces of wood but he would just break through it and return. I can't remember how long he stayed around for exactly but he actually ended up leaving me for roughly 1 year. I would then say at age 7 he returned again as the same image but this time he was even worse. By that age I had heard of diseases like AIDS on T.V so the Green Monster kept telling me that I was going to get AIDS and other dangerous diseases. I remember trying so hard to get rid of him but he would just never leave my head it was as if he was stuck there frozen. I can't recall exactly how long he stayed around for this time but it could not have been longer than a couple of months and then just like before he left me. Unfortunately I never told my parents about this persistent problem because being at the age of 7 I just really never understood how serious this actually was.

Anyway's after the Green Monster left me around the age of 7 for the 2nd time I ended up living a relatively OCD free life up until the age of 14 (Grade 9). From this point on to currently now I have been battling with severe Obsessive Compulsive Disorder. It would take me forever to explain the details about my OCD but basically they have changed from the previous contamination fears with the green monster to instead being centred around "Perfection". I spend hours everyday organizing personal objects into particular order and arrangement along with constant obsessive cleaning of other materials. I wish I could explain my OCD symptoms more in depth but like I said it would take forever and I'm sure you guys understand what I'm talking about. On top of my OCD diagnosis I have been diagnosed with what my doctor classifies as complex ADD which I guess could explain my poor behavioural problems in school along with early academic problems at a younger age particularly with Maths.

I'm currently under a psychiatrist who is my 3rd doctor and he is treating me for Severe OCD and ADD. I have been hospitalized twice due to additional major depression and have unfortunately really never had any success over the last 7 years with improving my condition. I have been on the following previous medications: Lovan, Zoloft, Lexapro, Fluvoxamine, Buspirone, Lithium and Risperidone. At the moment I'm currently on Effexor, Ritalin, Clonazepam and Seroquel and if this does not work my doctor said he will most likely put me on Clomipramine. On top of medication I have completed an intense CBT course and Im currently seeing a personal psychologist 1 on 1. I'm happy with the treatment that I'm receiving as my doctor is fantastic however with no improvement I suspect that the real problem is not being addressed.

I have done quite an extensive amount of research on PANDAS and I personally think that its quite possible I have this and it has gone untreated my whole life. Unfortunately I have been unable to find any strong leads on possible doctors in Australia who actually know what PANDAS is and even treat it. When I stumbled upon this forum when researching PANDAS I was so thankful to see such a supportive community of people dealing with similar problems. I'm writing to you all for any help and advice you can give because I'm really desperate in trying to improve my mental health. Therefore I have listed a few questions below and if anyone can shed some light on these I would really appreciate any input.

1) From this information do you guys think Its quite possible that I have PANDAS or another autoimmune disease?

2) What types of doctors/specialists treat autoimmune diseases like PANDAS ?

3) Do you guys know any specific doctors that have helped other patients with PANDAS or similar illnesses. If you have there contact information like an email that would be great and I'm not limited to just Australia my parents are prepared to fly me to the U.S if needed.

4. Just like any person I remember receiving plenty of sore throats when I was growing up but on the first night my parents saw me effected by my OCD they tell me that I never complained of a sore throat. However like I said I was sick and had a fever... Although If I did not have a sore throat does this then instantly eliminate the possibility of PANDAS?

5. If I do have PANDAS is it too late for successful treatment due to the fact that it has been so long undiagnosed ? Or is there previous adults who have been treated later in life ?

Thank you so much guys for taking your time to read my story. You have no idea how appreciative I am of this and if you can help me in anyway with these questions or any extra information it would be amazing.

[Chemar]

Hi Shelds and welcome

I think we do have other members in Australia here so hopefully they can assist in helping you locate physicians

[pr40]

several older Pandas people have joined the forum in last few months. you may want to contact them. look around the forum.

from what you say, it seems that your OCD was triggered by an infection. look at the pinned materialis and see recommended blood tests. do those.

if you suspect that you have auto-immune issues, you can try supplements against inflamation starting with fish oil which is purified of mercury and things like that. you can also change your diet, gluten and casein free is what some start with.

this forum is best for precise questions.

you may want to contact one of Pandas drs (among the pinned material) and try to schedule an apt. you need someone very knowledgeable to guide you throgh the process and forum cannot do that.

good luck

[qannie47]

Hi Shelds, You have some great questions. I think that anybody who has a track record or ocd is well advised to check out the Pandas connection. Our specialist thinks that learning about Pandas is the "Tip of the Ice burg " and the connection to many neuropsyche disorders. If you cannot find a Pandas friendly doctor quickly, look thru this forum, and you will find many blood tests that your doctor can order to at least start the process of finding an organic connection such as Pandas. There is the Cunningham's Test, Lyme testing, ASO & other strep titer testing. Pr40 & LLMD talk a lot about the value of methylation and the 23&Me test, find their posts. Some recent research has shown a correlation between Dopamine 1&2 autoantibodies and neuropsyche issues. Im not sure if labs are available for that, but I would definitely do that if it does not require too much hoop jumping. Also, Webpediatrics.com is a very useful site for diagnostic criteria for Pandas. Keep in mind that in mho that while there is documented research opinions out there, I think that No one doctor knows all the answers, and that there is still a lot to be learned...I wish the best of luck to you, and commend you for taking charge of your own health!!!

[Ozimum]

Hi Shelds,

So sorry you've had to deal with this for so long but I do think there's some hope. I'm in Melbourne and found Biomedical practitioners here in Australia are the most likely to have heard of PANS/PANDAS and will treat it, along with other conditions, including OCD. (A biomed dr helped my 19 year old son and he's now my number 1 hero!) I suggest you check out the websites for the following organisations who train health professionals here in biomedical protocols - Biobalance/Walsh Institute and MINDD Foundation. These biomedical protocols came out of the DAN! (Defeat Autism Now!) movement in the USA. (You don't have to be on the autism spectrum to see a Biomedical practitioner...it's just that these drs have been willing to think outside the box and have developed expertise in a number of areas which can be applied to the general population, such as gut disorders which can impact on neurotransmitters.) Both websites list practitioners, though some are better than others and I'm happy to give you a heads up if you drop me a private message. (See top right hand corner of this page and you will find the private messaging service attached to this forum.) I am protective of our doctors because they stick their heads out for our kids and can have a tough time with audits etc, so I don't like to use their names on public forums. You may need to wait for an appointment - the best ones are booked up for months - though you can get started by seeing one of the more experienced naturopaths.

 

For my son, recovery from the OCD took time...it was gradual but it did happen. My son is now happy and functional and the last of the OCD has slowly disappeared. We did everything we could to ensure recovery and that included a GF/CF low sugar, low potato diet (some cut out soy too). We discovered vitamin and mineral deficiencies through blood testing, and fecal screening showed up infections. Treatment has meant that these days he doesn't succumb to colds nearly as often and he now recovers quickly and it's been quite a while since he needed an antibiotic to get control of intrusive thoughts. So yes...I think there's hope!

Edited October 26, 2013 by Ozimum

[Shelds]

Hey Guys

Chemar: Thanks for the welcome turns out you were right ! =)

Pr40: Thank you very much for your advise and opinion on my condition. I agree with you and really do believe that my OCD was infection triggered. I will definitely try looking through this forum and try to locate Older patients who have possible PANDAS like myself. Diet keeps getting mentioned through research I have been reading online so it's really interesting that you mentioned gluten and casein free diets can help. I also completely agree with you that I require a highly experienced doctor to help me through this and I'm just crossing my fingers that I can find one !

Qannie47: I really appreciate your time taken in responding and your information about relative testing has given me a great starting point. I have not yet initiated contact with a PANDAS doctor but I will definitely see if I can get a heads up on things by asking my current doctor to try and issue me these tests. I find it really interesting that you talked about methylation because from my research I have discovered that "Under Methylation" is a consistent symptom of people with OCD. I also had a look at the 23&ME test and never really considered the help of DNA testing but after having a bit of a read this could in fact be of some help. Seeing I have ADD I will definitely be conducting some research in this Dopamine 1&2 Autoantibodies because there could possibly be a connection. You have no idea how much it means for you to provide this informative help ! Thank you.

Ozimum: Its so amazing that your from Melbourne and have seen my post ! The world can definitely get small on the internet. First off thank you so much for the information provided it has really brightened up my weekend with some hope. I did plenty of reading on both the Biobalance and MINDD websites and found there philosophies on treatment for mental illness to be extremely interesting. I have been struggling to locate any doctors on the internet from Australia who even talk about treatment of PANDAS and OCD so its such a relief to hear that you and your son have had success with this treatment. I have been reading amazing reviews that other patients have listed on the Biobalance website and it really sounds like the doctors are highly skilled just like you said. I completely understand you being hesitant on listing doctor information on public forums so that is not a problem at all I will definitely shoot you a private message.

I'm so glad that your son is doing well it must be such a relief for him to get his life back on a healthy track and I'm sure your so proud of him and the doctors work. Thank you so much again for contacting me and I will be in touch with a message.

Kind Regards

Shelds.

[PIK]

I had severe OCD like really starting at age 14, with OCD-type symptoms (fears you mention) at a younger age. I think you should certainly look into PANDAS. I believe that is what I had, and what I continue to have. I am 35. I believe I had rheumatic fever at age 16 which I never went to the doctor for, as well as glomerularnephritis. Presently ASO titers are at about 1500 and I finally got some attention from doctors. Good luck. Your story sounds familiar to me though, I think I may have a similar story to you.

[Shelds]

Hey PIK

Thanks for your message mate I really appreciate you taking the time and reading my story. I'm sorry you have had to deal with this awful disorder and I bet you know how rough the struggles can get. I'm definitely investigating PANDAS and have been fortunate to receive so much help from other members on here pointing me in the right direction. I really hope you are having luck finding treatment bro, if you don't mind me asking do you still currently have strong OCD symptoms at age 35 ? Or has the disorder changed over time ?

Shelds.

[Alex]

Hi Shields,

I've posted the links below on here before. They are by a psychiatrist who treats adult PANDAS. There are two articles from the 'Psychology Today' website and a proposed medical Journal article. He is a big believer in Tonsillectomy. The reader comments to the articles are also interesting. Good luck.

Alex

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html

[PIK]

I had very sever OCD. At age 28 it came to a head with hallucinations etc. I found relief with clomipramine. It worked like magic. I was fine within a day or two of starting it. FINE. I think I have very minimal psychiatric symptoms now, probably what most "normal" people deal with. Definitely don't have OCD anymore.

[Shelds]

Hey Guys

 

Alex: Wow mate thank you so much for those links. I'm in the process of contacting doctors through email and finding treatment so I will definitely try and contact Dr Jory Goodman ! The idea that my OCD could be solved by tonils being removed is amazing !!!

 

PIK: I'm really happy for you man and I'm glad Clomipramine has worked a success for you. My psychiatrist said that its the next medication I will try if Effexor does not improve me. If you don't mind me asking mate how are the medication side effects and what dosage are you on ?