EmersonAilidh Posted January 22, 2011 Report Posted January 22, 2011 I tend to hang out too much on the P.A.N.D.A.S. board & forget about this one. Sorry. :/ We have an LLMD appointment on March 3rd! Very excited about that. Going to an extremely P.A.N.D.A.S. savvy immunologist in the area to do an immuno work up sometime before then. He doesn't book far out so we haven't rushed to make an appointment yet. Much progress on the home-front... although I'm unsure how I feel about that. Got my Mom & stepdad to sit down & watch Under Our Skin with me. Did all the discussion questions & everything. It mostly helped them understand why getting treatment is so hard but it also helped them understand just how debilitating it could be. Mostly thanks to Mandy's case. On the downside... my Mom literally immediately after the documentary ended decided that her depression was actually misdiagnosed Lyme. That one was thanks to Dana's case. Far be it from me to doubt the validity of anyone's health concerns, but it's just annoying when you have to fight tooth & nail to try to get your Mom to make you an appointment or to talk to one of the online Moms or to even freaking google something, but when she thinks she suddenly thinks that she has it everything is different. She theorized that we've all had congenital Lyme since my great-Grandma (who had Alzheimer's & Parkinson's. Could have been Lyme but no one knows), although I think I did my very best to assure her that that's really, really, really unlikely since none of us are nearly as disabled as your typical congenital Lyme kid. After four months of asking her to, she's finally picked up Cure Unknown. I'm glad that she's becoming more interested & knowledgeable, but it just really sucks that she only seems to care when it applies to herself. Hopefully everyone can understand why that would be frustrating. I'm not trying to be ungrateful. It's just so aggravating. In other news, 400mg Suprax for ten days thanks to a strep throat. Still taking 40mg Nadolol daily for headaches. Still fully believe they're encephalopathy/Lyme headaches but haven't gotten any answers regarding that. Literally zero progress in regards to the Narcoleptic symptoms. Well, depends on how you look at it. Neurologist was a royal ##### & told me I'd have to take the test again even though they still can't tell me why I got burned & won't do it any differently. General physician prescribed Nuvigil just to keep me awake during school & to make sure that I'm safe driving. So far... still napping. If I'm being totally honest, still miserable & hating everything. Hopefully that's the strep talking, though. All in all, good things are coming. Just gotta wait.
pixiesmommy Posted January 22, 2011 Report Posted January 22, 2011 Sometimes you have to take what you can get, I guess Look at the Naldol and see if it has acetaminophen- that could be making you worse if it's depleting your glutathione levels, which are usually low when you have Lyme anyway. Also, look up Gluten Ataxia. I was just reading about it last night (there is an awesome food allergy mag called Living Without) and I think a lot of us have symptoms that could be attributed to this too. I know you are already GF, but not sure how careful we all are about cross-contamination with cutting boards, utensils, etc. It's really scary to read the neuro stuff that can happen from "just" gluten alone, if you have the ataxia. Hang in there! I hope your Lyme visit goes well. Keep us in the loop! Manda
EmersonAilidh Posted January 22, 2011 Author Report Posted January 22, 2011 Sometimes you have to take what you can get, I guess Look at the Naldol and see if it has acetaminophen- that could be making you worse if it's depleting your glutathione levels, which are usually low when you have Lyme anyway. Also, look up Gluten Ataxia. I was just reading about it last night (there is an awesome food allergy mag called Living Without) and I think a lot of us have symptoms that could be attributed to this too. I know you are already GF, but not sure how careful we all are about cross-contamination with cutting boards, utensils, etc. It's really scary to read the neuro stuff that can happen from "just" gluten alone, if you have the ataxia. Hang in there! I hope your Lyme visit goes well. Keep us in the loop! Manda I definitely will keep you guys in the loop. & I haven't gotten worse with the Nadolol. It has made a dent in the headaches.
JuliaFaith Posted January 23, 2011 Report Posted January 23, 2011 So glad to hear you are making progress even if it is not quick. Just a thought on the sleepiness (remember my old non-pandas/lyme son has narcolepsy); one of my lyme son's symptoms was fatigue and that would make the narcolepsy much worse so hopefully as you start your lyme treatment that will subside somewhat. My son is on his 2nd month of lyme treatment and he seems to be much less fatigued, cough is gone, tic in throat is gone, and opposition to daily school work has been non-existent for 3 weeks (it was at least 3 times a week before). He has a lot of lung issues and is being treated for those so that could be part of it. That movie was really good for me to watch too! So glad your mom saw it. She seems a bit like my mom so I understand a bit of what you are talking about. After a long time, I finally realized that she is who she is and there is nothing I can do to change her. So now that I understand that and accept it, it makes it easier to talk with her and have a relationship (not too close) where we talk periodically on the phone (the phone is a great thing). Best wishes on your treatment(s) and healing! Julia
Suzan Posted January 23, 2011 Report Posted January 23, 2011 I'm glad to see your update! I was wondering about you. I haven't been over to the pandas board recently but I need to continue stopping by there too. That totally bites about getting strep. I am very glad though that you will be seeing a lyme doc soon. I can't wait to hear that update. Good and bad news about your Mom, I hear you there. I hope her personal interest in lyme now will end up benefiting you more to make it all worth it. Hang in there. Susan
Stephanie2 Posted January 25, 2011 Report Posted January 25, 2011 Totally unrelated comment, but I just want to say: YOU ARE TOTALLY AWESOME, EMERSON! KEEP FIGHTING!
EmersonAilidh Posted January 25, 2011 Author Report Posted January 25, 2011 So glad to hear you are making progress even if it is not quick. Just a thought on the sleepiness (remember my old non-pandas/lyme son has narcolepsy); one of my lyme son's symptoms was fatigue and that would make the narcolepsy much worse so hopefully as you start your lyme treatment that will subside somewhat. My son is on his 2nd month of lyme treatment and he seems to be much less fatigued, cough is gone, tic in throat is gone, and opposition to daily school work has been non-existent for 3 weeks (it was at least 3 times a week before). He has a lot of lung issues and is being treated for those so that could be part of it. That movie was really good for me to watch too! So glad your mom saw it. She seems a bit like my mom so I understand a bit of what you are talking about. After a long time, I finally realized that she is who she is and there is nothing I can do to change her. So now that I understand that and accept it, it makes it easier to talk with her and have a relationship (not too close) where we talk periodically on the phone (the phone is a great thing). Best wishes on your treatment(s) and healing! Julia I'm on Day 8 of 150mg Nuvigil for the Narco & so far it's not doing much good. I'm not EXHAUSTED (head drooping, slack muscled, falling over, slurring words... THAT kind of exhausted) but I'm still super tired & napping multiple times a day. That is encouraging! & I have gotten to that point too. There's no point in fighting it. I love my Mom.
EmersonAilidh Posted January 25, 2011 Author Report Posted January 25, 2011 I'm glad to see your update! I was wondering about you. I haven't been over to the pandas board recently but I need to continue stopping by there too. That totally bites about getting strep. I am very glad though that you will be seeing a lyme doc soon. I can't wait to hear that update. Good and bad news about your Mom, I hear you there. I hope her personal interest in lyme now will end up benefiting you more to make it all worth it. Hang in there. Susan I... am very confused about the "strep". I posted about it on the P.A.N.D.A.S. board. :/
EmersonAilidh Posted January 25, 2011 Author Report Posted January 25, 2011 Totally unrelated comment, but I just want to say: YOU ARE TOTALLY AWESOME, EMERSON! KEEP FIGHTING! I don't think I've talked to you since you told me about this very forum, Stephanie!!! Thank you so much.
mandyknowles Posted January 25, 2011 Report Posted January 25, 2011 Emerson that movie was awesome and i cried. my daughter has so many of the symptoms on there it is unreal. I am gonna show it to my dad because he had the nerve the other day to tell me that she didnt want to go to school...really drives me nuts
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