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Everything posted by EmersonAilidh

  1. 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
  2. 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 &
  3. 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?
  4. 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.
  5. Second day into my junior year ~ Already exhausted but excited nonetheless. On September 9th I will be halfway through treatment!

    1. browneyesmom


      Have a great year, Emerson - I know you will do well! :)

    2. tpotter


      Good to see this positive update. I hope things are still going well.

  6. 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.
  7. 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.
  8. 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 s
  9. 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,
  10. 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!
  11. 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 tha
  12. 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.
  13. 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?
  14. 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.
  15. 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
  16. I think that for a lot of doctors once you find a weird infection like Lyme or any of it's co-infections you have more motivation & a better reason to go hunting for moRe, which is why so many of us that get diagnosed with Lyme end up having a bucketload of other infections as well. My LLMD & I argue frequently about which came first - the immune suppression or the Lyme. As far as I'm concerned it differs from person to person & the successfulness of treatment greatly depends on that answer. Lyme treatment lasts different lengths of time for everyone, for me it's 8-12 months since
  17. Can anyone tell me how I could recognize this test if I have the lab work in hand? My immunologist ia currently in India so I've kind of just been sitting on this workup for the time being.
  18. For me the symptoms started less than a year ago but the problem itself wasn't recognized until it became very pronounced a few months ago.. My blood pressure is HORRIBLE & only getting worse! The first really low reading was on May 3rd, when my LLMD's nurse recorded it at 95/70. She brushed it off, saying that I was pretty tiny at 5'3" & 100 pounds but I was quick to point out that I've always been this tiny & in the past my blood pressure has been one of the few things that I could count on to be normal. At my appointment on the 8th the same nurse got pretty frustrated when after
  19. The PANDAS I was diagnosed with was nothing like the monster that this horribly misunderstood disease (yes, even among us on this very forum) has snowballed into over the years. When I was twelve years old a doctor handed me a paper with a picture of some green & orange bacteria on it. It explained, in brusque 12 point Times New Roman, that when I got Strep I went crazy. It was short, it was sweet, it was simple - a sorry consolation prize for the fact that from the moment that paper was pressed into my hands nothing would ever be simple again. Temporal lobe Epilepsy. Anemia. Narolepsy
  20. If you wanna worry about shedding you might as well build a panic room because regardless of what they say, there is no real fixed rate for any of them. I miss talking you to, Sarah!
  21. And to add to Micheals thought: I remember you mentioning that your brother has autism. Many think that Lyme can actually cause autism, so the possibility that you both got Lyme in utero is not out of the question. I guess at this point it may not matter for you which came first, but it could be information that could help your brother and mother. All of my siblings are half siblings so he really is my "brother from another mother", hahah. Further complicating everything.
  22. Thank you! That Website is awesome! Every other attempt I've made to find an immunological forum has been fruitless, haha. If only we had time to join all the forums...
  23. I've always been open to the underlying immune problem theory! That's what We're searching for right now, as a matter of fact. Not so open to the congenital Lyme hypothesis though. I think that one's a little overused because I have yet to meet, see, or hear of any proven case that isn't profoundly disabled. Not to mention that my Mom doesn't have Lyme. With hOw sick my half siblings get (ALL of them have had Pertussis at least once) I think it's got something to do with a bum paternal gene.
  24. As far as I know this is my first skin infection but I don't even know what D levels are! Care to enlighten me?
  25. Maybe you could search around on sites like this to see if anything fits? http://www.immunedisease.com/ Also, have you read this about KPU? I think it's something to consider. http://www.publichealthalert.org/pdf/2010_05.pdf It's my belief that you need to treat the lyme no matter what and then treat what else you can in the mean time while searching for all the other answers. I am so sorry for all the things you are going through but I am glad you are making small improvements. It seems your body is trying to get well and stirring up a lot. Susan Suz ~ our main s
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