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Posts posted by EmersonAilidh

  1. 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. :(

  2. 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.

  3. 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.

  4. 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.

  5. 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...

  6. 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! :D

  7. Symposium on the Neurological Aftermath of Post-Infection. ~




    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.

  8. 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.

  9. 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.

  10. 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. :)

  11. So the more posts I read, even going back a year or more, it seems like there's just more and more and more co-infections and that the herxing and discovery of more "stuff" never ends. How long does Lyme treatment take? Is it a life long thing? Like SF Mom ( Hope you don't mind that I use you as an example) You said that in treating Lyme, you found all these other infections/viruses etc. Now, you claim that that's good and that it's helped- but has it really? Or has all the antibiotic use just disturbed bacteria that was dormant and not really all that problematic?


    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 I had four coinfections including Babesia, the most difficult to get rid of. Antibiotic treatment can take quite a long time but it's important to remember that complete remission of all symptoms is rare even when all bacteria/viruses/etc.. are eradicated or made dormant because the infection(s), particularly when harbored untreated for years on end, can negatively impact your neural pathways, effectively making your body "used to" producing these symptoms. For a lot of patients that is why treatment drags on sooo long ~ they just don't feel all the way better! From day 1 with my LLMD we established that we are not aiming for 100% improvement because it would be unrealistic. Some patients choose to continue treatment for years, others make do with what they've got.


    If the infections weren't really "all that problematic", why would we be seeking treatment in the first place? I have not found a single person who saw no difference in their general wellbeing &/or livelihood with Lyme treatment, be it a small victory or a huge triumph. Why wouldn't antibiotics & antivirals help clear bacterial infections & viruses? Herxheimer reactions are not just Lyme mumbo jumbo ; they are a completely legitimate medical fact & are accepted across the board by doctors. If treatments that make you worse before they make you better are inherently flawed or not helpful, modern medicine as we know it would be in big trouble.


    For those of us that got Lyme because we were immunodeficient (as opposed to those of us who became immunodeficient because we got Lyme) there's basically no telling how long our other infections that may have only come to light with Lyme treatment have really been hiding away. Chronic infections of any sort can be disastrous to the body, so when you have someone like me who has not one or two but at least six I can't imagine how treatment wouldn't be at least somewhat helpful! Personally, although I am not & probably never will be back to my old self, these five or so months of treatment have made an astronomical difference in many aspects of my day to day life. When I started treatment the proof was in the pudding for me ~ I have never in my entire life felt as miserable as I did for that first week of herxing. Went on Mepron? Gastrointestinal issues got a lot better. Went on Valacyclovir? My disposition & mood changed DRAMATICALLY. Doxycycline? Helped my energy. Cefdinir? Helped my Dystonia. The list goes on & on but I'll save you the details, haha. I think I speak for most people who can't even remember life without Lyme & all of it's buddies when I say that yeah, treatment can go on for a long time if you want the whole nine yards but at this point I'd be okay with just a couple inches of change!

  12. 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 four tries she couldn't find any blood pressure. Finally, she measured it at 85/60. A few weeks ago a dental hygenist couldn't find my blood pressure after six tries so she assumed she had a bum cuff & didn't revisit the issue.


    My LLMD assured me that hypotension wasn't necessarily a negative development unless I ws experiencing symptoms from it & I wasted no time pointing out that I most definitely DID feel like I was about to black out every time I stood up! He prescribed another two months of Adrecor, but that I've been taking that the whole time my blood pressure has been dropping from q perfect 120/80 to a pitiful 85/60 so I don't have much faith in it. He also provided me with a sample of IsoCort just in case the AdreCor proved to be ineffective once again & told me to see an endocrinologist when/if it got even lower. Has anyone else experienced problems with this?? I've come to terms With being sick, I just wish it would stay the same "sick"! Stop tacking new stuff on! Agh!

  13. 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. Lyme, Bartonella, Babesia, Mycoplasma, Blastocystis Hominis. Celiac's. Previous Long QT Syndrome. Arthritis. MRSA, H1N1, Bronchitis, STREP, Epatein-Barr, HHV6, Rubella. Infection after infection after infection. Immune abnormalities out the wazoo but no name for them all.


    It's obvious to me that the disease I live with everyday is not the PANDAS I was introduced to all that time ago. We tend to bicker & discuss pretty specific things on this forum. Vaccine shed times, Glutamate involvement, CamKinase tests & doctors with only one letter for names. It's been too long since we've addressed the elephant in the room. What the #### are we dealing with here? Everyone's expeerience seems to be wildly different from the next, so I pose this question ; what exactly is PITAND to you?

  14. I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).


    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.

  15. Two great places to learn about immune deficiencies:


    www.primaryimmune.org Give them a call-they will send you all kinds of free info and set you up with a Peer Advocate in your area. The Publications link on their site is really informative. This is a really great organization. There is an online community available right on this site. May be worth joining and asking them some questions. I learned a lot when my dd was first dx'd. Need to spend some more time on there but just don't have the time!


    http://jmfworld.com/ Somewhere on the site you can find a 4 step testing procedure for Immune Deficiency. Looks like it is under the "About PI" tab.


    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...

  16. I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).


    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.

  17. Hi Emerson,


    What are your D levels? Early last year, before discovering my DD's D levels were catastrophically low (4), she was getting one skin infection (bacterial and viral) after another. She was put on 50,000 IUs D3 for 6 months and is now taking 10,000 IUs D3 per day and has not had a skin infection since.


    I'm so sorry you are having such difficulty! Are you taking Transfer Factor LymPlus? I have found this supplement to really help our immune system and it's specifically targeted for Lyme.




    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?

  18. Your other comment reminds me of what my immunologist said to me when I told him I was on Lyme treatment ~ "Well, what point is there in waging war when you don't have your soldiers?" he didn't think that we shouldn't be treating the Lyme but he thought we would be wasting valuable time & money by ignoring potential underlying causes & possibly turning around from Lyme treatment just to catch something else. Besides MY doctor obviously, where would be a good place to search for information pertaining to immunodefficencies & things like that? Because at this point we're both scratching our heads, unsure of what to check for next...


    Maybe you could search around on sites like this to see if anything fits?




    Also, have you read this about KPU? I think it's something to consider.




    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.




    Suz ~ our main source of confusion is that I have enough of all of my cells... They just aren't functioning. Most of the PID's I've read about leave kids lacking T &/or B cells Or some other immune system component. Definitely not dismissing the idea, just haven't found any that fit me yet. I am definitely kicking the Lyme's butt & thank you for your kind words!

  19. PhillyPA ~ thank you! My immunologist is currently on vacation & I know he's fascinated by my throat so I'm gonna let him look at it before I go through with the surgery. Tested positive for EBV while he was gone. I am gonna do it, just not sure when at this point!


    Sarah ~ I know it's not necessarily a cure all but I figure it wouldn't make things worse! I'm just tired of mystery infections. The ENT said that they wer DEEP pockets & having my tonsils removed would at least prevent future incidents from getting so bad.

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