Need Advice. 24 and Possible PANDAS

[khodge]

Hello Everyone,

This is my first time posting here and sorry if its all over the place. But I have been dealing with OCD and anxiety for almost two years and recently stumbled upon some new information. I just recently switched psychiatrists and during my first visit after telling him my story he came to the conclusion I possibly might have PANDAS. The reason why he thinks this is because I still remember the exact day and time this all began two years ago and the panic was so abrupt and intense it stopped me in my tracks from then till now. Also he notice some possible facial tics that I wasn't aware of. But I am also suffering from severe insomnia, fatigue, and just withdrawn from my life. So I took an ASO test and the results were above normal but have never had a strep throat in my life. But as long as I can remember ive always had severe sinus infections and seasonal allergies, some to the point I needed MRI's. And after my psychiatrist asked me if I remember anything prior to the onset of my OCD and about three weeks prior to the initial onset I had a severe sinus infection that I went untreated. And I have taken ssri's that have exacerbated my symptoms which led to doctors thinking I was bipolar, but once stopping the ssri my condition improved. im just a little flustered right now because my psychiatrist just instantly prescribed antibiotics without any further tests being done. And I was wondering if there was any further tests I could do to kind of get a definite answer? I live in Florida and Dr. Murphy is right around the corner but I think she is strictly pediatrics. But I feel like some things are being overlooked without the proper diagnosis and im worried that by taking antibiotics it might alter any further tests that I take. And to top it off the whole situation is just causing more worry and anxiety. I guess my question is if so what other tests can be done and if so where can an adult get these tests done. Any advice would be helpful. Thank you

 

Ken

 

[Kayanne]

Hi Ken,

 

I'm sorry that you've been suffering. When my DD was diagnosed with PANDAS in 2009, I remember being very concerned that it seemed so casual - without any real tests to back it up. A very knowledgable PANDAS mom asked me one question; "Is your daughter a completely different child than she was 2 months ago?" The answer was "yes".

 

At a minimum, if your doctor didn't do this when you first developed OCD, I would suggest a basic panel of health markers such as a CBC/thyroid panel and others (your doc will know). That's usually a jumping ground to see if anything else needs to be followed up.

This is a clinical diagnosis -- just like any psychiatric disorder -- it is symptoms and their context. For PANS/PANDAS it is a whole host of neuropsychiatric symptoms in the context of infections, that remits when infections are addressed and/or immune modulation treatments are given. It's a very similar treatment protocol to a psychiatric disorder -- pick a treatment based on symptoms/history and see if the patient responds.

 

Other infections that may trigger this (mycoplasma, lyme, EBV, flu) should be kept in mind, if you're not responding to treatment for strep.

 

Dr. Cunningham has developed a panel of tests that look for neuronal autoantibodies that may be the culprits in this disorder. However, it's not a definitive test to rule PANS/PANDAS in or out. It's more a snapshot of what may be happening; if the antibodies are elevated, it is just one more piece of the puzzle. Her website is: http://www.moleculera.com. Antibiotics do not interfere with her tests, but steroids, IVIG and Plasmapheresis do. If you pursue lyme testing, I think you need to stop antibiotics, but I do not have any experience with Lyme.

 

I think a call to Dr. Tanya Murphy's office would be helpful. Just ask if she only sees children...but I think the term "Pediatric" refers to upwards of 18 years old. Ask for a recommendation of another doctor if she can't see you--but you seem to have a good psychiatrist right now.

 

Good Luck.

Edited May 30, 2014 by kayanne

[rowingmom]

I agree with kayanne. PANS/PANDAS is not always caused by strep.

 

In our daughter's case it was caused by a Bartonella hensalae infection. Bartonella (cat scratch disease) is frequently one of the lyme coinfections, but can be a stand alone infection as well. It can be carried by various arthropod vectors (fleas, bed bugs, ticks), and is often the cause of neurological/psychiatric symptoms.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

[WorriedDADNMOM]

Sending PM...look in upper right corner.

[Missmom]

Since you have been dealing with this for two years now you will probably need more than the standard 10 day dose of antibiotics before you notice any improvements. Two months of treatment may be needed. Also, you did not say what antibiotic was prescribed but what most of us on this board have found is that amoxicillin is just not strong enough to work. Many have success with Zithromax, and many have success with augmentin (that is amoxicillin with culcuvative). SSRI should be only used in very low doses and only when necessary.

[khodge]

Hello.

 

Thank you everyone for knowledge and advice.

 

Hi Ken,

 

I'm sorry that you've been suffering. When my DD was diagnosed with PANDAS in 2009, I remember being very concerned that it seemed so casual - without any real tests to back it up. A very knowledgable PANDAS mom asked me one question; "Is your daughter a completely different child than she was 2 months ago?" The answer was "yes".

 

At a minimum, if your doctor didn't do this when you first developed OCD, I would suggest a basic panel of health markers such as a CBC/thyroid panel and others (your doc will know). That's usually a jumping ground to see if anything else needs to be followed up.

This is a clinical diagnosis -- just like any psychiatric disorder -- it is symptoms and their context. For PANS/PANDAS it is a whole host of neuropsychiatric symptoms in the context of infections, that remits when infections are addressed and/or immune modulation treatments are given. It's a very similar treatment protocol to a psychiatric disorder -- pick a treatment based on symptoms/history and see if the patient responds.

 

Other infections that may trigger this (mycoplasma, lyme, EBV, flu) should be kept in mind, if you're not responding to treatment for strep.

 

Dr. Cunningham has developed a panel of tests that look for neuronal autoantibodies that may be the culprits in this disorder. However, it's not a definitive test to rule PANS/PANDAS in or out. It's more a snapshot of what may be happening; if the antibodies are elevated, it is just one more piece of the puzzle. Her website is: http://www.moleculera.com. Antibiotics do not interfere with her tests, but steroids, IVIG and Plasmapheresis do. If you pursue lyme testing, I think you need to stop antibiotics, but I do not have any experience with Lyme.

 

I think a call to Dr. Tanya Murphy's office would be helpful. Just ask if she only sees children...but I think the term "Pediatric" refers to upwards of 18 years old. Ask for a recommendation of another doctor if she can't see you--but you seem to have a good psychiatrist right now.

 

Good Luck.

Thank you for your knowledge. But yes, I went ahead and called the rothman center because that is where I go for CBT but they said Dr Murphy only treat pediatrics. kind of frustrating. But I will ask for a recommendation, thank you very much.

[khodge]

Since you have been dealing with this for two years now you will probably need more than the standard 10 day dose of antibiotics before you notice any improvements. Two months of treatment may be needed. Also, you did not say what antibiotic was prescribed but what most of us on this board have found is that amoxicillin is just not strong enough to work. Many have success with Zithromax, and many have success with augmentin (that is amoxicillin with culcuvative). SSRI should be only used in very low doses and only when necessary

 

Hello.

 

Thank you everyone for knowledge and advice.

 

Hi Ken,

 

I'm sorry that you've been suffering. When my DD was diagnosed with PANDAS in 2009, I remember being very concerned that it seemed so casual - without any real tests to back it up. A very knowledgable PANDAS mom asked me one question; "Is your daughter a completely different child than she was 2 months ago?" The answer was "yes".

 

At a minimum, if your doctor didn't do this when you first developed OCD, I would suggest a basic panel of health markers such as a CBC/thyroid panel and others (your doc will know). That's usually a jumping ground to see if anything else needs to be followed up.

 

This is a clinical diagnosis -- just like any psychiatric disorder -- it is symptoms and their context. For PANS/PANDAS it is a whole host of neuropsychiatric symptoms in the context of infections, that remits when infections are addressed and/or immune modulation treatments are given. It's a very similar treatment protocol to a psychiatric disorder -- pick a treatment based on symptoms/history and see if the patient responds.

 

Other infections that may trigger this (mycoplasma, lyme, EBV, flu) should be kept in mind, if you're not responding to treatment for strep.

 

Dr. Cunningham has developed a panel of tests that look for neuronal autoantibodies that may be the culprits in this disorder. However, it's not a definitive test to rule PANS/PANDAS in or out. It's more a snapshot of what may be happening; if the antibodies are elevated, it is just one more piece of the puzzle. Her website is: http://www.moleculera.com. Antibiotics do not interfere with her tests, but steroids, IVIG and Plasmapheresis do. If you pursue lyme testing, I think you need to stop antibiotics, but I do not have any experience with Lyme.

 

I think a call to Dr. Tanya Murphy's office would be helpful. Just ask if she only sees children...but I think the term "Pediatric" refers to upwards of 18 years old. Ask for a recommendation of another doctor if she can't see you--but you seem to have a good psychiatrist right now.

 

Good Luck.

Thank you for your knowledge. But yes, I went ahead and called the rothman center because that is where I go for CBT but they said Dr Murphy only treat pediatrics. kind of frustrating. But I will ask for a recommendation, thank you very much. I am glad I found this psychiatrist, but he expressed to me that he knows a little bit about PANDAS so I was just looking for someone who is more experienced with PANDAS to work with.

 

[khodge]

Since you have been dealing with this for two years now you will probably need more than the standard 10 day dose of antibiotics before you notice any improvements. Two months of treatment may be needed. Also, you did not say what antibiotic was prescribed but what most of us on this board have found is that amoxicillin is just not strong enough to work. Many have success with Zithromax, and many have success with augmentin (that is amoxicillin with culcuvative). SSRI should be only used in very low doses and only when necessary.

My doctor gave me I think Zithromax 250 mg. But he is also trying to up my Zoloft, and I am kind of hesitant just because of past experience with ssri's.

[khodge]

I agree with kayanne. PANS/PANDAS is not always caused by strep.

 

In our daughter's case it was caused by a Bartonella hensalae infection. Bartonella (cat scratch disease) is frequently one of the lyme coinfections, but can be a stand alone infection as well. It can be carried by various arthropod vectors (fleas, bed bugs, ticks), and is often the cause of neurological/psychiatric symptoms.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

Yes. Once I found out strep doesn't necessarily cause it I had a feeling that my reoccurring sinus infections might have something to do with it. plus a lot of them went untreated because I did not like taking anything for my infections. Also I found out that both sides of my family a little history of autoimmune illnesses. My father's mother had severe lupus, and my mother's sister and mom have thyroid issues. Plus my older brother has been suffering with his own issues for a while as well.

[Missmom]

At least at this point you have a psychiatrist willing to treat this. I would be less concerned with all of the "tests" that may or may not give you any answers, and more concerned trying different things to see what makes you feel better. It is best to try one thing new at a time. Stay with the Zithromax and see if you notice any improvements. I would not increase the Zoloft until you see if the abx. make a difference.

[PowPow]

I would recommend that you check out this website:

 

aealliance.org

 

It is a great resource about autoimmune encephalitis- which can present with many of the symptoms you mentioned, and considering the family autoimmune history you point out, it would be worth your time to consider this as a potential cause..

 

My child (now 16) has been diagnosed and treated for AE and she is doing very well. The treatment is similar to treatment for PANS (steroids, IVIG, pex) but includes other treatments and , of course, there may be an identifiable cause to your suffering.

 

If you watch the Grand Round video on the AEAlliance website (under Clinical Care tab) there may be some ideas of labs you could get some helpful doctor to consider.

 

People hear the word "encephalitis" and presume it means someone comatose, on a ventilator or with seizures. That is not true. There are many people out there suffering with psychiatric and/or neurologic symptoms and the cause is a very treatable autoimmune disorder.

 

I will be happy to share more if you like. Feel free to PM me.