Nightmare.

[EmersonAilidh]

As you can Probably tell from the title, these past couple weeks haven't exactly been great. I'm typing this on my phone on a bus, so I apologize in advance for any typos.

 

Memory problems have worsened tenfold. Putting that first because I honestly can't remember what I was going to post... Whatever. Guess I'll start with yesterday.

 

Saw a psychiatrist (FINALLY) & Dr. Rao (Again... FINALLY). Liked both of them. My Mom had to come in for the first psych consult. We mostly just covered the basics but I'm definitely looking forward to being back in therapy. He suggested mood disorders. BiPolar Disorder I, II, Cyclothymia... All that. I don't know when anyone is going to realize that I AM NEVER MANIC. When my head hits the pillow, I'm out for twelve hours & still fighting naps all day. Not exactly restless if you ask me. I go from bad to really bad. Sometimes I even get to touch baseline. He supported my diagnoses & ordered an EKG & bloodwork. EKG because a lot of psych meds are "QT prolonging," which I've had a problem with in the past. He said that once we get the bloodwork he'll schedule me another EEG, but only because he wants to take me off Adderall. You can probably imagine how hard I laughed at that. "Well, if you want me walking into your office & being coherent for my appointments I'd suggest you not go that route."

In all seriousness though I know Adderall worsens seizures & that with my EEG I probably shouldn't be on it... But I can't go without it. Not in some crazy amphetamine junkie way, in an I'm a disabled Narcoleptic interested in getting through another day kind of way.

 

Rao was next. LOVED him. Gave him a full history & he's creating a unique immuno workip for me to have drawn in seven days. He knows for a fact that we're doing all of the basics & also T-Cell workups but he's adding more still to that. He doesn't think my immune system is in good shape. Surprise surprise there, haha. he also had no answer for the mystery infection that took four months & three courses of antibiotics to clear but definitely didn't like the sound of it.

 

He also reiterated how badly I need another EEG. After looking at the first report he said it was Epileptogenesis of the Temporal Lobe. That was in November of 2009. Went home & looked up Temporal Lobe Epilepsy & it's admittedly got me pretty scared. Also led to a huge fight between me & my Mom. My stepdad's out of town & we've been at eachother's throats ever since.

[Guest pandas16]

Emerson- correct me if I'm wrong but it seems like you've been diagnosed with a lot of different illnesses from your posts- first PANDAS, then Lyme, then Epileptogenesis of the Temporal Lobe amongst other things? My sincerest advice to you would be to at some point stop searching for "what" is causing your problem and pick the diagnosis that fits you best out of the ones that have already been given. You know your body and medical history better than any doctor. You can't rule out anything unless you stick with a specific treatment plan for a specific disease for at least several months to determine whether or not it is effective. If you've done steroids, IVIG and PEX for PANDAS without success for a year, then perhaps look into Lyme (which it seems like you've done) if Lyme treatment is ineffective after a certain period of time then look to something else. Just make sure your giving treatments a fair chance before accepting all these new dx. What disease were you originally diagnosed with?

Edited April 20, 2011 by pandas16

[MichaelTampa]

Kind of along the lines of what pandas16 is saying, yes a lot of diagnoses. I have had many of them too. Each doc that specializes in the particular one will want to treat it, and they'll have drugs they think will work. Treatment of the overall condition (lyme, for example, if that is at the heart of it for you) will very likely take care of many if not all of these problems. People I know are amazed to hear of how many different things have been treated with the lyme treatment.

 

Just not sure where you're headed with the different docs and treatments. Even if they are fixed with lyme, it can be useful or even critical to deal with them symptomwise in the meantime. For example, if you really need to get through the day, or you really need to avoid seizures (they can be dangerous), and so on, this is where treating the symptoms can have a lot of value. Anyway, you and your docs may be fully aware of all this, but I guess that's what I am just trying to make sure you have an eye on. I think sometimes it is easier for the patients to understand this, but quite hard for the specialty docs to really believe it.

 

Anyway, sorry you're struggling, I have had really bad memory problems too, I know it can be frustrating, wishing you well.

 

Michael

[tpotter]

Emerson,

 

I keep reading that you are having trouble staying awake. Several months ago, I saw a news story about how the flu vaccine appears to be causing narcolepsy in some teenagers. Of course they ended it with saying how we still have to do what's best for the whole (what a totally axxxnine remark!) Anyway, perhaps you have some narcolepsy? Or, have you been tested for sleep apnea or some other sleep disorder?

[EmersonAilidh]

Emerson- correct me if I'm wrong but it seems like you've been diagnosed with a lot of different illnesses from your posts- first PANDAS, then Lyme, then Epileptogenesis of the Temporal Lobe amongst other things? My sincerest advice to you would be to at some point stop searching for "what" is causing your problem and pick the diagnosis that fits you best out of the ones that have already been given. You know your body and medical history better than any doctor. You can't rule out anything unless you stick with a specific treatment plan for a specific disease for at least several months to determine whether or not it is effective. If you've done steroids, IVIG and PEX for PANDAS without success for a year, then perhaps look into Lyme (which it seems like you've done) if Lyme treatment is ineffective after a certain period of time then look to something else. Just make sure your giving treatments a fair chance before accepting all these new dx. What disease were you originally diagnosed with?

 

When my teacher was explaining religion she told us that faith is an umbrella. You've got Islam. & then under that umbrella you've got Sunni, Shi'ia, Sufi, all that... You've got Christianity, & under that you've got Protestantism, Catholicism, Orthodoxy, blah blah. I see P.A.N.D.A.S. & Lyme the same way. You've got P.A.N.D.A.S., & then under that you've got OCD, tic disorders, immune problems... Under Lyme though you just pretty much have everything. Epilepsy, heart problems, & Dystonia definitely aren't uncommon with Lyme. That being said, I have "picked" one. Or two, I guess. The P.A.N.D.A.S. & the Lyme. Those two led to more things though. Good luck finding someone with Lyme who has no other diagnoses.

 

I haven't done IVIG, PEX, or steroids. You can't do steroids with a bacterial infection. They work with P.A.N.D.A.S. by telling your immune system to shutup, so when you need your immune system to be working that's anything but a good idea. We chose to go the antibiotic route before IVIG/PEX but they are still on the table for afterwards. Dr. Rao assured me that I was right when I chose to do antibiotics first, & he's an immunologist. He also agreed with me that seeking specifically P.A.N.D.A.S. treatment would be basically pointless since I'm already on antibiotics anyway. He doubted that throwing Augmentin into the mix of strong ones I'm already on would make much of a difference.

 

I have never had treatment before this March, besides for an RxHappy neurologist who liked to give me experimental meds. I'm not doing individual treatments, I'm on Lyme treatment. I do take Adderall & Nadolol for the fatigue & headaches just to get through the day though. I am on such a low dose of both that they can hardly be called "treatment".

 

The P.A.N.D.A.S. diagnosis came first (technically after the "Tourette's" one) with the OCD & the Lyme diagnosis came after that, even though I had it for years beforehand. The subsequent diagnoses came in between.