EmersonAilidh

Not only is this idiopathic syndrome interesting in itself, but I thought you guys would appreciate the clear, direct mention to PANDAS when describing the proposed strep immune reaction. No "this diagnosis is controversial" disclaimer, no calling it by another name or anything like that. Just PANDAS. recognition is nice, isn't it? http://en.m.wikipedia.org/wiki/Encephalitis_lethargica

I am now halfway through treatment, which has worked wonder for me. My extended QT is gone, my TLE is gone, & my Cervical Dystonia is better than ever before. That being said... it has also had a downside. In the past seven months or so, I have lost about 1/3 of my body mass. I've gone from 5'3" & 138 pounds to hovering around 90 pounds. None of my clothes fit. People I don't even know feel the need to call me Anorexic/Bulimic every single day. My blood pressure, which I've mentioned before, is now too low to read most days. We were checking vital signs in my Clinical class & the poor girl that got me as a partner kept telling our incredulous teacher that she couldn't hear anything. It wasn't until the teacher, who was a hospice RN for 27 years, tried & failed to find it that the girl got another partner. Last I checked it was 70/50. My Adderall has been at the same dose for a year, I've been gluten-free for going on two years, & my diet hasn't changed at all. I just keep losing weight & my blood pressure keeps dipping lower & lower... We've tested for Candida. Not only was I negative, I wasn't even close to positive. We've tested for Addison's. Negative as well. &, of course, I've been told I have an eating disorder by every doctor too lazy to help me. I AM NOT ANOREXIC. I EAT THREE MEALS A DAY. So why am I shedding pounds like they're nothing??? Dr. Rao, a well known PITAND immunologist in DFW Texas, thinks that treating the Lyme has made something else rear its ugly head. So far though, we have yet to identify that ugly head. No progress on the immunological front, either, although I've been interested in something called Mannose-Binding Lectin Deficiency, but that wouldn't explain either of the above symptoms. Please help.

Have fun in France, Pandas16! I got an opportunity to visit as a student ambassador some years ago & it's a beautiful country, especially in the north. TPotter ~ Have you received any news?

These results also meant that I am allowed to drive again! Yay! I am about to be halfway through treatment & at the moment I feel like I've hit a plateau. Some days are better than others but I haven't seen much improvement this round. overall I have improved by LEAPS & BOUNDS though. Still very optimistic but just stagnated a bit, I suppose. Feeling particularly exhausted & moody with school starting but that's to be expected from anyone, haha.

Sorry, another woman who sees the same doctor corrected me. Our doctor uses NATUROPATHY. not homeopathy. Honest mistake on my part. I won't get into it because I'm not interested in sparking a debate, simply stating my view, but I haven't tried homeopathy because I do not believe in it.

http://www.PatientsLikeMe.com I can't speak much for it seeing as how I only registered today, but it allows you document treatments, map the progression of symptoms, & connect with people living with problems like yours! I especially like how easy it makes organization, especially in regards to medications & doctor's appointments. If you sign up be sure to add me : EmersonAilidh. P.S. ~ They currently don't recognize PANDAS or PITAND but I have submitted a request that should be reviewed soon.

What does the "fight or flight part" mean? I have yet to do even a basic blood draw. Obviously I want an actual endocrinologist to do the stimulation tests (ACTH & insulin) but I don't know why no one will just take my blood. -____- I've been interested in Addison's & Hashimoto's Thyroiditis, although I know I don't have the latter, because they tend to go hand in hand & have symptoms that sound quite a bit like Lyme. I hope you get some answers soon! Pandas16, I do use homeopathy. My LLMD combines alternative & conventional medicine so I am on pharmaceuticals as well as supplements & such.

When Addison's Disease was first described all of the original patients' adrenal glands had been damaged by Tuberculosis, not the general autoimmune process typically attributed to the disease today. Now I know that Amanda Ramsey's daughter & I have both been suspected to have Addison's so I wanted to ask around to see if anyone else with Lyme on here also had endocrine problems. Addison's or otherwise. Although I can't find much good literature about it, I figure that if any infection feasibly COULD damage the glands like that, I bet ours could. Lyme, Babesia, Mycoplasma, Bartonella, Ehrlichia, Anaplasma... Addison's Disease causes low blood pressure, hyperpigmentation, MOOD CHANGES, Sodium/Potassium imbalances, fatigue, headaches, joint/muscle pain, gastrointestinal issues & more. With the exception of a few unique ones like hyperpigmentation (which I have), quite a few of the Addison's symptoms sound like Lyme ones. Obviously I don't think everyone with Lyme has Addison's or vice versa but for those of us who have had problems with these specific things, have you ever been tested? What about CT scans to check for visible damage of the kindeys/adrenal glands? What do you think? The soonest appointment we could get with a pediatric endocrinologist down here was October 26th, so it will be quite a while before I get any answers...

Just thought I'd share that with everyone. I have yet to see the results for myself but I trust this hospital. Despite the Temporal Lobe Epileptogenesis diagnosis in November of 2009 the EEG showed no seizure activity. Granted, I know whatever seizures I may or may not have are not photosensitive so I am looking into a three day test. The only abnormality on the MRI was an asymmetrical Hippocampus, which from what I've read is not of much if any concern. Yay yay yay!

Symposium on the Neurological Aftermath of Post-Infection. ~ http://medicine.tamhsc.edu/research/centers/ccdd/upcoming-events.html I say this tentatively because I have yet to totally clear it but our house is open to anyone wishing to attend but not wanting to shell out the money for a hotel. Not to mention, I'd be pretty surprised if the two towns this website mentions even have hotels, hahah. We are about two hours away from Temple & three hours away from Round Rock, but if we were to rent a fifteen passenger van & split the gas it would more than likely still be cheaper than having to get a hotel, eat out at restaurants & all that.

The main thing they're worried about with that is Serotonin Syndrome. I was unlucky enough to end up in the ER for it the first time I mixed Adderall & Celexa. If you consult your doctor on starting at a low dose of both & then working your way up you can avoid the toxicity because your body has time to compensate & effectively get used to the excess Serotonin.

Even though my case seems more physical than hers I was still really glad that they included Dana. That way everyone watching it doesn't Think that all of us Lymies are as bad off as Mandy, you know?

I'm a gluten free vegetarian & I'm careful to stress that while my diet helps with my symptoms, it only makes a noticeable difference in those RELATED symptoms. Lots of kids with PITAND, including myself, have pretty horrible gastrointestinal issues & mine literally disappeared when I cut out gluten but it didn't do much, if anything, for my mental problems. There was a poll on here about just that some months ago, actually.

We have so much bad Lyme press in Texas I don't think people would look twice if it were to ever get published here. Cos of course, it's impossible to get Lyme in one of the most tick-infested states in the country... Anyway, I really like The "one study" where one quarter of the patients supposedly suffered reactions that, with the exception of th gallbladder (& on that note... Take my gallbladder, see if I care), sound like symptoms! Real specific & sound piece of journalism with no sources or even a name for the mentioned study. Also, nice to know that our plight makes for good news to those who know nothing about us or our struggles. Lazy "writers" must find it much easier to kick back & creep around on here than to, ya know, do some actual research?! So hello New York Times, The Sun, & Star Telegram! I am not your story.