So depressed

[Guest pandas16]

I was diagnosed with a severe case of PANDAS when I was 9. To sum it all up I went through all the same as all of you for 3 years. I was well for 14 years on prophalactic zithromax. I graduated college with high school and college with honors. I applied for 1 job and got hired on the spot. Now I'm on disability. I'm having the WORST PANDAS symptoms. I dont even want to begin to describe. idk someone cheer me up with something happy? I feel like thats it. I had good 14 years and another 60 of ###### to look forward to? I just want it to end.

Edited April 1, 2011 by pandas16

[lismom]

I was diagnosed with a severe case of PANDAS when I was 9. To sum it all up I went through all the same as all of you for 3 years. I was well for 14 years on prophalactic zithromax. I graduated college with high school and college with honors. I applied for 1 job and got hired on the spot. Now I'm on disability. I'm having the WORST PANDAS symptoms. I dont even want to begin to describe. idk someone cheer me up with something happy? I feel like thats it. I had good 14 years and another 60 of ###### to look forward to? I just want it to end.

 

 

I'm sorry things have taken this turn. I think you need to keep investigating what is holding you back from getting well. Someone may have ask you this already but have you tested for lyme?

[Guest pandas16]

I was diagnosed with a severe case of PANDAS when I was 9. To sum it all up I went through all the same as all of you for 3 years. I was well for 14 years on prophalactic zithromax. I graduated college with high school and college with honors. I applied for 1 job and got hired on the spot. Now I'm on disability. I'm having the WORST PANDAS symptoms. I dont even want to begin to describe. idk someone cheer me up with something happy? I feel like thats it. I had good 14 years and another 60 of ###### to look forward to? I just want it to end.

 

 

I'm sorry things have taken this turn. I think you need to keep investigating what is holding you back from getting well. Someone may have ask you this already but have you tested for lyme?

 

 

had mycoplasma, checked lyme don't have it

[philamom]

I'm not on this forum as much, mostly on the lyme forum, but wanted to extend a big cyber hug. I'm sure more folks will be along to cheer you up! The good thing is, there is more knowledge these days...now you just need to figure out what will help. Hang in there! Hopefully, you'll get some good suggestions soon.

[Mary M]

My dd12 just had IVIg #2 with Dr K and he commented about the adults that are surfacing or re-surfacing. Have you contacted your PANDAS doc? Any other PANDAS docs? After so many years of healthy function I can not imagine how you must feel. We are all here for you!

Mary

from Michigan

[JAG10]

Oh, pandas16!

 

Is your despair because you don't have a plan of what to try next? That always helps me hang on when things get rough.

 

I also feel like, as a community, early spring and early fall are the danger zones for us all. I work in an Elem school. Sitting in the faculty lounge this week, I listened as one teacher talked about having strep last week, another has scarlet fever, but she's been on abx a few days, another has "some kind of pneumonia" but she's on an abx cocktail too. And these are the adults in the building, for goodness sake! Ahhh!!!!

 

I'm so glad you reached out. This too shall pass. It will.

 

Jill

[wornoutmom]

when did you find out you had mycop? It can be a B**CH to eradicate. did you do followup testing to make sure it is really gone? It took my son 9 months on treatment dose Biaxin plus IVIG before we finally got a negative result. You got better before, you will get better again!!!!!!!!! It's ok to feel sorry for yourself for a while -, but NOT to lose hope. Treat yourself like you are your own child (with compassion and care)- and fight for yourself. You know you would be telling us moms not to give up! Line up your support system - tell everyone what is going on - its not your fault! Do one thing each day, no matter how small, towards getting yourself answers and getting better. Please tell yourself this is a temporary reaction to an infection and you can and will achieve remission again. And then get on the phone to your PANDAS doc, and if you don't have one - get one - and get this figured out! I look forward to seeing you postyour progress.!!!

[Guest pandas16]

There is a plan in place. I have a PANDAS doctor. I have an appointment Tuesday, I'm just really struggling now. Plus the fact that I'm an adult complicates things now. He wants to try some very out of the box things. I'm just scared. 14 years I was okay and now I'm just watching everything fall apart. When I started back in school I was years behind, but I worked SO hard despite PANDAS and got a scholarship and everything. For what? To just see all my hard work leave. That's whats happening at the moment. When you say negative mycoplasma do you mean IGG or IGM?

Edited April 1, 2011 by pandas16

[SSS]

All of your hard work has NOT left. Your amazing accomplishments, awards, education- that is YOU, it will never go.

You should ALWAYS be very proud of that.

If a co-worker became ill- needed a back surgery, skin cancer, something medical where he/she were ill- would you think, what a loser?

They are a lesser person, all of their past erased, write them off?

NO. You would send them good thoughts, knowing they were in a hard time in their life, and they are focusing on getting well to get back to life.

Just like you.

Sending out some prayers for you---I hope you feel better soon----(and you WILL feel better.)

[butterflymom]

=

Edited October 9, 2015 by tampicc

[kimballot]

There is a plan in place. I have a PANDAS doctor. I have an appointment Tuesday, I'm just really struggling now. Plus the fact that I'm an adult complicates things now. He wants to try some very out of the box things. I'm just scared. 14 years I was okay and now I'm just watching everything fall apart. When I started back in school I was years behind, but I worked SO hard despite PANDAS and got a scholarship and everything. For what? To just see all my hard work leave. That's whats happening at the moment. When you say negative mycoplasma do you mean IGG or IGM?

PANDAS 16 -

 

You are an amazing woman. My 14 year old son is having a very hard time right now and I keep thinking of you and the stories you have told me about what you and your parents went through over the years. You are so very smart and knowledgable about PANDAS. You will beat this. I am glad you have a plan. You need to hang on and stick with it - so that you can get well and also (selfishly) so that you can help us know more about what to do. We are all in this together.

[KaraM]

OK - this may be very weak...

 

How did the monkey get downstairs?

 

(just tryint to make you smile, even for a second....)

[Guest pandas16]

Thank you everyone.

[PhillyPA]

Please tell us what you are currently experiencing.

 

My thoughts are with you. Hang in there. Have a friend over. Watch a funny movie.

[Guest pandas16]

I have severe intrusive thoughts about killing myself, jumping off of buildings and leaping off of railings. The compulsion to jump off the top of my stairs is so bad that I had to draw my OCD and tape it on the railing. Whenever I have the urge to jump over, I look at the picture and remember that it is the OCD telling me to do that, not the real me. It fell like its normal to just curl up in a ball all day. I want to constantly bang my head against the wall and scream. I have periods where I am so angry for no apparent reason &I have to repeat the same question or sentence about 50 times a day to my parents. I can't concentrate long enough to eat lunch. I also blurt out inappropriate things. I full body tics where I cannot control my body at all. Optimism though right. Optimism. It'll get better.

Edited April 1, 2011 by pandas16