Need help urgent!

[Michel12]

Hello i'm a Pandas patient in maryland who for a whole freaking decade has been dealing with this illness and ruined my family. I need a doctor now who is going to treat me,. I am not on any medicines right now. The pychiatric medicines dont work and the only thing that did the most benefit was mionocycline and anti-inflammatories. I need an autoimmune doctor who is going to treat me aggresively. Dr. L has not followed up and been of no benefit. I need to see someone NOW. Please I am beegingg you guys recommend me someone who can see me acutely because I cannot tolerate this illnesss any longer

[Michel12]

Hi same person. I just need someone to talk to right now if thats ok if anyone can pm me? I'm feeling really suicidal

[PowPow]

Pleae go to er for suicidal concerns. Please!

Go to aealliance org. To find a doctor who maybe able to help with autoimmune neuropsych problems.

Does advil help?

Duke has been a godsend for my child but not for adults. Are you an adult?

[PowPow]

I now you are probably not up to it, but sometimes to get followup from dr l you need to call incessantly.

[qannie47]

I would see if Dr. Swedo would see you.

[ktdommer]

Michel-

Please hang in there! It will and does get better. You need to get in the hands of a good doctor. Did you find someone to talk to? Tomorrow is a new day and the doctor offices wil be open. The ER is always open.

Thinking of you,

K

[searching_for_help]

I would also suggest using your patient portal to message Dr. L.

 

We were disappointed with our visit there, but Dr. L has been pretty good about responding to our messages on patient portal. The visit was a disappointment because our dd is an adult and Dr. L was unable to set up the PEX there due to her age.

 

Did she diagnose you? Did she have any suggestions for treatment?

 

My dd is feeling the same as you. She can't do it anymore, and desperately wants this all to end. She just finished plasmapheresis, but is not feeling better yet. We are just trying to help her make it through the days until she starts feeling better, but she said the intrusive thoughts are so intense it is unbearable.

 

What are your PANDAS symptoms like?

[BeeRae22]

If you are feeling this desperate and reaching out on this board for help with suicidal thoughts, I would urge you to seek face-to-face help immediately. You should not try to handle those feelings alone or on the Internet!

 

The National Suicide Hotline is 1-800-273-8255. Call a family member, call the hotline, please contact someone or go to the er.

[Sheila]

We know it has been very difficult for you. The conditions you have can make things seem like a roller coaster, and when you are down it's super hard to realize that you really will be up again.

 

You have friends on this forum who care very much about you, and beerae22 has excellent advice--that you get help from someone in person rather than trying to connect through the internet.

 

Please call the suicide hotline she mentioned when you feel desperate, and turn to family or professionals you know who can help and will be able to follow through with your needs. It's too much to try to go it alone.

 

Please let us know how you are doing--we care and will be watching for a note from you tomorrow!

 

 

 

 

[Michel12]

Hello everyone and sorry for the delay, my dad took me out to get out of the house and get some fresh air. Its just so hard dealing with this and feeling like no one understands. Dr. L did diagnose me and I had the high cunningham panel. ITs just that I feel like no one understands me. I drive my parents crazy with this and im in such pain yet no one understands the whole picture. My pychiatrist doesnt understand pandas and my treatment team is not communicating with eachother. ANd I feel I need acute care but everytime I wne to a mental hospital they denied the PAndas and just did what they wanted to do and it didnt help. Dr. L wants to do IVIG but we keep calling her and calling her and she wont set the protocal up with my other doctor. For weeks. I cant talk to my parents because I yell at them.

I'm 22 btw. but still see a pediatric doctor

Edited December 2, 2014 by michel12

[Michel12]

I would also suggest using your patient portal to message Dr. L.

 

We were disappointed with our visit there, but Dr. L has been pretty good about responding to our messages on patient portal. The visit was a disappointment because our dd is an adult and Dr. L was unable to set up the PEX there due to her age.

 

Did she diagnose you? Did she have any suggestions for treatment?

 

My dd is feeling the same as you. She can't do it anymore, and desperately wants this all to end. She just finished plasmapheresis, but is not feeling better yet. We are just trying to help her make it through the days until she starts feeling better, but she said the intrusive thoughts are so intense it is unbearable.

 

What are your PANDAS symptoms like?

My Pandas symptoms. I feel such activation and agitation in my head. I cant think and am so perseverative. I have such headpain everyday that exacerbates it. I feel no pleasure. Its very hard to explain. We have donme alot of things through the pychiatric route and that really traumatized me because it did not make me feel better or address my symptoms. ANd i yell at my parents about it among my other perseverations. I'm just going insane. IVe had this disease for a decade most ofit undiagnosed. I stay in the house all day because of my chronic fatigue and pain. I just cant wait anymore this is torture. I even have IVIG scheduled for THIS thursday. But i have no idea if its gonna work and Dr. L hasnt even told my doctor the specifications for it. I mean what is this going to do really? What can anything do really? Ive been on all the pychiatric meds ive had ECT. And I feel worse and terrible.

[searching_for_help]

Michel12,

 

Your feelings right now sound so much like my dd's, except she does not have the physical pain and fatigue. You are both the same age, and she also was misdiagnosed for a long time. She would be willing to message you if you would like. She is going through a hard time now, also, but realizes that some days feel worse and some better. Her intrusive thoughts are the hardest for her. She is truly a lovely person when she feels better, as I'm sure you are, but like you said, is quite difficult for us to deal with when she feels bad. It's like a panic takes over and she can't control herself. Then the guilt feelings are overwhelming. I'm sure we don't always respond as we should, because we are tired, too. (Parents aren't perfect either!)

 

People DO recover from this, even people like you and my dd who have had it for a long time. It's just so darn tricky figuring out what the trigger is, or what might help.

 

Have you been tested for Lyme? I think you mentioned minocycline helping - I think that is used for Lyme. But Lyme is best treated with a combo.

 

Let me know if you would like to message or e-mail with dd. I know she actually feels less alone knowing there are others struggling with the same issues. So many people do not understand. Especially in the psychiatric field, sadly.

 

Humongous hugs to you!

[searching_for_help]

BTW, I reading back through your posts... It's not your job to call Dr. L to set up protocols for IVIG. Your pediatrician should be the one contacting her.

 

The doc at the hematology center we used had already called Dr. L before we arrived for treatment. He has his own way of doing things, but consulted with Dr. L specifically about the PANDAS issue. All we did was request Dr. L's office to fax the notes from our visit to our current doc, and he took care of calling her.

 

You and your family should not be put in the position of setting anything up. Just give your docs office her number, and request the notes from your visit to be faxed, and let your ped office take care of it. They are supposed to be taking care of YOU!

[cynditk]

Hi Michel-

 

Are you still on the mino? Are you on any antibiotics regularly? any anti-inflammatories regularly?

 

If you can travel, don't know where you are, I have a good doc I can recommend who can help you as well as Dr.L, sometimes it takes more than one doc because they are all so busy. If you have one in person she can manage continuing care via phone/internet, she is very responsive and detail oriented.

 

Please don't give up! I have a 19 YO with PANDAS and Lyme, and BTW if you are having pain and fatigue you most likely have Lyme because they aren't PANDAS symptoms. Treatment takes a long time and is very difficult. His pain was not helped by any of the regular pain medications so we finally started on medical marijuana which helps him mange the pain and anxiety as well, it has been the best thing we have done to help him mange symptoms while we go through treatment. He is severe, late stage lyme and PANS, and he was starting to get suicidal as well. Like everyone else said you definitely need face to face help if you are suicidal, not the boards. Also please tell your parents when you get that way!!!

 

My son is on IVIG, a boatload of anti-inflammatories, daily antibiotics, IV antibiotics, and IV's to support detoxification. He is treading water at this point but is not getting worse, and we finally feel like with the MMJ we are able to help him manage symptoms. PANDAS and Lyme together are a really difficult combination, and you most likely won't get better on PANDAS treatment alone.

 

I'm sure he would be happy to talk with you, he is housebound and is just getting through the days as well. He is always looking for people to connect with who get it.

[Michel12]

Michel12,

 

Your feelings right now sound so much like my dd's, except she does not have the physical pain and fatigue. You are both the same age, and she also was misdiagnosed for a long time. She would be willing to message you if you would like. She is going through a hard time now, also, but realizes that some days feel worse and some better. Her intrusive thoughts are the hardest for her. She is truly a lovely person when she feels better, as I'm sure you are, but like you said, is quite difficult for us to deal with when she feels bad. It's like a panic takes over and she can't control herself. Then the guilt feelings are overwhelming. I'm sure we don't always respond as we should, because we are tired, too. (Parents aren't perfect either!)

 

People DO recover from this, even people like you and my dd who have had it for a long time. It's just so darn tricky figuring out what the trigger is, or what might help.

 

Have you been tested for Lyme? I think you mentioned minocycline helping - I think that is used for Lyme. But Lyme is best treated with a combo.

 

Let me know if you would like to message or e-mail with dd. I know she actually feels less alone knowing there are others struggling with the same issues. So many people do not understand. Especially in the psychiatric field, sadly.

 

Humongous hugs to you!

Thank you. Yes I have been tested for lyme a million times with the western blot and it always came back negative. I'm still on the minocycline now at 200mg but it feels like it lost its affect. The first time I took it I felt warm throughout my body. My muslces felt less tense and my head was calmer. It was the first time I felt good. My doctor says it could have been lyme even though it was always negative. I would love to talk to your daughter I will send you my email.

 

BTW, I reading back through your posts... It's not your job to call Dr. L to set up protocols for IVIG. Your pediatrician should be the one contacting her.

 

The doc at the hematology center we used had already called Dr. L before we arrived for treatment. He has his own way of doing things, but consulted with Dr. L specifically about the PANDAS issue. All we did was request Dr. L's office to fax the notes from our visit to our current doc, and he took care of calling her.

 

You and your family should not be put in the position of setting anything up. Just give your docs office her number, and request the notes from your visit to be faxed, and let your ped office take care of it. They are supposed to be taking care of YOU!

We finally got through today and they said they faxed it to him several times so I hope he got it. My mom usually has to handle a lot but my ped is sill thourough.

 

Hi Michel-

 

Are you still on the mino? Are you on any antibiotics regularly? any anti-inflammatories regularly?

 

If you can travel, don't know where you are, I have a good doc I can recommend who can help you as well as Dr.L, sometimes it takes more than one doc because they are all so busy. If you have one in person she can manage continuing care via phone/internet, she is very responsive and detail oriented.

 

Please don't give up! I have a 19 YO with PANDAS and Lyme, and BTW if you are having pain and fatigue you most likely have Lyme because they aren't PANDAS symptoms. Treatment takes a long time and is very difficult. His pain was not helped by any of the regular pain medications so we finally started on medical marijuana which helps him mange the pain and anxiety as well, it has been the best thing we have done to help him mange symptoms while we go through treatment. He is severe, late stage lyme and PANS, and he was starting to get suicidal as well. Like everyone else said you definitely need face to face help if you are suicidal, not the boards. Also please tell your parents when you get that way!!!

 

My son is on IVIG, a boatload of anti-inflammatories, daily antibiotics, IV antibiotics, and IV's to support detoxification. He is treading water at this point but is not getting worse, and we finally feel like with the MMJ we are able to help him manage symptoms. PANDAS and Lyme together are a really difficult combination, and you most likely won't get better on PANDAS treatment alone.

 

I'm sure he would be happy to talk with you, he is housebound and is just getting through the days as well. He is always looking for people to connect with who get it.

Yes asides from the PAndas when I was in the hospital I was diagnosed with POTS and so see a pediatrician who specializes in it. The lyme test even with the western blot and I believe along time ago the PCR always came back negative and we did it many many times. IT wasnt until last year though that we found the minocycline worked after trying it. My mom had read brain on fire by sussanah calahan, and that put us on the PAndas trail where we then saw Dr. L. I would love to talk to your son also.