New here. Old PANDAS

[okrad]

Hello

I am midage now, but had a severe lifealtering event at 14 which I now believe to have been PANDAS.

 

I was normal and healthy and happy and then I got a bug and was sick. In less than a month I was full blown anorexia, OCD, not friends, selective mutism, dropped out of school, stopped gymanstics and almost died.

 

I never recovered. I have never had one day of normal eating since then. It took me 13 years to get through Freshman year at College because I refused to give up.

 

I have gastro troubles, sensory troubles, OCD and so many other troubles that I got Dxed autism twice but that was refuted later. Heart beats oddly (dxed), migrains, neuropathy hyperactivity, and many other issues.

 

Then one Dr had the nerve to say it was all mental. But it happened overnight. Literally.

 

I have had a horrific life and Drs have told my parents and myself so many things.

 

I am here alive because I was blessed to be married once which means I have kids (grown up and HEALTHY!!) so I have a lot of joy despite having my life robbed. It was robbed not by the virus that hit me, but hte medical community who told me I was mentally ill, personality disorders, ignoring all the neuro.

 

So they did not rob me of my whole life. I also have a religious life that sustains me and a fmaily that loves me, so I am grateful! I hope to learn more and also help others going through it now and also to find Drs near me that might be able to help me though it is very late in the game.

 

I do a LOT of jucing and detoxing and almost everything gets better exept the food and sensory, the neuro things. I had an accident, so they got worse.

 

What tests have shown:

CMV, EBV, Herpes 6, Genetic duplication (which may have left me suceptible) over 8 genes, one of which codes for Neuron (PACSIN 1),

[dasu]

What genetic test did you run?

[mama2alex]

Hi, I'm sorry you've been dealing with illness for so long. Given the heart issues, neuropathy, headaches, and sensory sensitivity in addition to psychiatric symptoms, you should talk to a Lyme-literate doctor and be evaluated for tick-bourne infections. People with Lyme are often positive for EBV, HHV6, CMV and other bacterial and viral infections.

 

If you're not sure whether you should see a Lyme doctor, here's a questionnaire that can give you a sense of how likely it is that you have Lyme and co-infections: http://www.cangetbetter.com/symptom-list

It was put together by Dr. Richard Horowitz, a well-respected Lyme doctor - he has coined the term MSIDS or Multi-Systemic Infectious Disease Syndrome, which is how he refers to the constellation of infections that comprise "Lyme." He just published a book called How Can I Get Better? This may be a good place for you to start as well.

 

Lyme doctors have long known that it can cause anxiety, depression, OCD, ADHD, autism, etc.

[okrad]

What genetic test did you run?

 

Hi. It was at a teaching hospital. It was karyotyoing and something else. It showed a long duplication which perhaps made me susceptible to the PANDAS

[okrad]

Hi, I'm sorry you've been dealing with illness for so long. Given the heart issues, neuropathy, headaches, and sensory sensitivity in addition to psychiatric symptoms, you should talk to a Lyme-literate doctor and be evaluated for tick-bourne infections. People with Lyme are often positive for EBV, HHV6, CMV and other bacterial and viral infections.

 

If you're not sure whether you should see a Lyme doctor, here's a questionnaire that can give you a sense of how likely it is that you have Lyme and co-infections: http://www.cangetbetter.com/symptom-list

It was put together by Dr. Richard Horowitz, a well-respected Lyme doctor - he has coined the term MSIDS or Multi-Systemic Infectious Disease Syndrome, which is how he refers to the constellation of infections that comprise "Lyme." He just published a book called How Can I Get Better? This may be a good place for you to start as well.

 

Lyme doctors have long known that it can cause anxiety, depression, OCD, ADHD, autism, etc.

 

 

This is very good information! I will look that up. I heard that it is VERY hard to get Lyme testing. Is that true?

[mama2alex]

 

Hi, I'm sorry you've been dealing with illness for so long. Given the heart issues, neuropathy, headaches, and sensory sensitivity in addition to psychiatric symptoms, you should talk to a Lyme-literate doctor and be evaluated for tick-bourne infections. People with Lyme are often positive for EBV, HHV6, CMV and other bacterial and viral infections.

 

If you're not sure whether you should see a Lyme doctor, here's a questionnaire that can give you a sense of how likely it is that you have Lyme and co-infections: http://www.cangetbetter.com/symptom-list

It was put together by Dr. Richard Horowitz, a well-respected Lyme doctor - he has coined the term MSIDS or Multi-Systemic Infectious Disease Syndrome, which is how he refers to the constellation of infections that comprise "Lyme." He just published a book called How Can I Get Better? This may be a good place for you to start as well.

 

Lyme doctors have long known that it can cause anxiety, depression, OCD, ADHD, autism, etc.

 

 

This is very good information! I will look that up. I heard that it is VERY hard to get Lyme testing. Is that true?

 

It's not hard to get Lyme testing if you have the right doctor. The right tests from the right labs need to be run, and even then they are not 100% accurate. You need a Lyme-literate doctor to look at the entire picture - history, current symptoms, the proper Lyme test, the proper co-infection tests, other positive tests you already have, etc - in order to make a diagnosis.

 

Depending on where you live, someone from this forum may be able to recommend a good Lyme-literate doctor (LLMD), if you decide to go that route.