And . . . we have a diagnosis. Lyme disease, unequivocally. I'm strangely euphoric - after a year of not knowing what was wrong and having no plan to fix it, I'm actually happy to have a dx and a plan for treatment. And a doctor we trust.

Erin, :grouphug: , I hope you are feeling better today. Guys, we have an appointment with a Lyme-literate ND who sounds perfect! We spoke to him on the phone today, and have a first appt. tomorrow. His approach is exactly what we are looking for: he's knowledgeable about Lyme, but also about other neurological conditions, so he will be looking at the whole picture - the POTS, the EDS, the GI stuff, the headaches, in addition to the Lyme. And he's all about treating the person holistically, as the unique person they are. I'm so hopeful. In book news, I started The Absolute and Large and Memoirs of a Geisha, which I've read before, but not for years.

We spoke by phone with the Lyme ND today. He sounds fantastic, just exactly what we are looking for - Lyme literate/knowledgeable, but not solely focused on Lyme, he treats a variety of neurological issues and knows about POTS, JHS, etc. too. Committed to creating a personalized plan for dd, based on her situation & her symptoms, which may include abx & herbs & supplements. But a holistic, integrated plan to figure out what all is wrong with her, and treat it in a way that won't make her sicker. We have an initial appointment with him tomorrow! Guys, I feel like the cavalry is finally coming. It's about time.

I finished Jar City. I enjoyed it, and will read the next one. It wasn't a typical mystery in that you figured out pretty early what had happened, that wasn't the point. The point was the unfolding of the why and the interplay of the characters. Erlendur is now up there with Dalgliesh as a favorite police investigator of mine, although of course he isn't dreamy like Adam is. :laugh: So, another Bingo row, that's 8 rows so far: Book with a Duke as a main character – Katherine – Anya Seton Has pretty pictures in it – The World of Ice & Fire – G.R.R. Martin Mystery –Jar City – Arnaldur Indridason Translated from a language not read previously in translation – War with the Newts – Karel Capek Oprah book club selection – Cane River-Lalita Tademy

That does look interesting! I finished The Makropolis Secret. It's a play about immortality, kind of a cross between The Picture of Dorian Gray and one of Wilde's comedies. I have one more Capek to try, The Absolute At Large. After that I'm back to the 1970s in my journey through Utopian/Dystopian lit.

I finished reading State of Wonder. it was really great, I enjoyed it a lot. I was sucked in, surprised multiple times, and moved. I really believed the characters. Sometimes life doesn't give you easy, obvious choices. Sometimes life isn't like a fairy tale and people aren't like movie heroes. This book felt both really really and completely surreal.

Oh, sapphire, good. I've been planning to try Tanith Lee's Biting the Sun, which has two volumes, Don't Bite the Sun and Drinking Sapphire Wine. Just put it on hold. I finished Saramago's The Elephant's Journey last night. I love how Saramago writes, but this book was a solid 3 stars for me. I enjoyed the whimsy of the writing, but it was a fairly plot-free book and didn't really go anywhere. Well, they went from Lisbon to Vienna, but other than that . . . So it was fine, but not earth-shattering. Still making progress on Jar City, State of Wonder, and The Thirteenth Tale (audio). It almost lost me there during the description of Isabel and Charlie's relationship, but I'm persisting for now. New to the mix is some Karel Capek, an early 20th century Czech writer of dystopias and satires. I read War With the Newts a couple of months ago, and I'm now reading two plays, R.U.R., which coined the use of the term "robot" which is derived from a Czech word (as is "pistol"). The other play is The Makropoulos Secret, which reminds me a lot of an Oscar Wilde play, which means I'm not really sure *what* is going on, and know one in the play seems to know, either.

Oops. Whoever sent Jar City to me, thank you! Sorry I forgot which book fairy it was :)

You sent me Jar City, right? Thanks, I am enjoying it. I'll try Skinny Dip next time I'm in the mood. We got results from the Lyme Western Blot. They are listed as equivocal because one of the measures is strongly positive and one is not. But after further research, the result is considered by LLMDs to be positive. Unequivocally. She also tested positive for Mycoplasma, which is a common Lyme co-infection. Or means nothing, depending on which doctor you talk to. :glare: Coming up this week is a phone consult with an ND who specializes in treating neurological issues and Lyme, I'm hoping he'll be our new guy. We also have a phone consult with the Kaiser pediatric infectious diseases specialist down in SF, but I don't have too high of hopes from that one - apparently Kaiser doctors aren't allowed to believe in Lyme unless you walk in the door with a fever and a bulls-eye rash. Later in the month we have an appt. with a new family medicine doctor at Kaiser, we fired our ped. This new doctor was suggested by our ND, she is a DO and apparently is open to thinking outside the box and has worked with the ND in the past to give more holistic care to her patients. So I'm hopeful that will be an improvement too. And then in October we have an appointment at a Pediatric Autonomic Disorders clinic. So we have hopes of getting some answers in the next two months, but no real changes yet. We're doing a lot of supplements and trying to get an exercise program set up that she can handle. The PT gave us a program, but she can only do one or two reps on some of the exercises. It's literally like we are starting at the very beginning to try and strengthen her muscles from zero. Looking back over the last year, I still am not sure exactly how it has come to this point. But hopefully this is rock bottom and we start steadily improving from here. And, it's hot. 112 yesterday, and only cooled down to 72, which means we're starting out 10 deg warmer than yesterday. This is the crisis day today - 113, they are saying - and it cools down to 102 tomorrow. Wish us luck.

I'm glad our Texas friends are ok, and hoping that Irma gives the South a pass. If I may whinge for a moment, it's supposed to be 112 here for the next 3 days. And, yep, we have no AC. And Shannon's illness makes her extremely sensitive to heat. I'm not actually sure what we will do to cope, but I'm not looking forward to it. Still mostly reading medical stuff, but I did finish Dinosaur Teeth by Michael Crichton. I enjoyed it. It wasn't what I expected, but it was entertaining - a Yale student comes of age after being stranded in the West during a dig, during the Sioux Indian wars, in the time of Wild Bill and the Earp brothers. It would be a good Western for anyone still looking. I read it for the Big Bingo Dinosaur square. I started reading Jar City last night, because I needed something different. I don't read a ton of detective/police procedural type novels, other than PD James, but I do like my gritty, disturbed detective who wrestles with his own demons while trying to solve a case, so I think I'll like this. I'm really enjoying State of Wonder by Ann Patchett. She's one of those popular novelists I've always avoided, for some reason, but after enjoying Commonwealth I decided to give some of her other stuff a shot. This one is excellent - set in the Brazilian Amazon, main character a half-Indian-from-India doctor who is revisiting some of her old demons. I'm also listening to The Thirteenth Tale, which is delicious, as promised.

Amy & Angela, :grouphug: :grouphug:

That is true, but we also have a LLMD/ND lined up for next month, too, so it's good on both fronts!

We got switched over to a new primary care doc!!!!!! This is a person at Kaiser that our ND has worked with in the past and recommends. Her service was closed but the ND asked her to take us on and she agreed. Yippee! We won't be able to get in until the 19th, but I'm very pleased with this development and looking forward to meeting her.

Thanks for all the detail. I'm going to try it again but try having her drink a small amount & build up. I like the idea of this because it's got the nutrition of coconut milk. Sometimes the gastroparesis is so bad that dd just can't face eating, but smoothies work well for her. I like the idea of having another liquid meal that has some good fats & calories. But of course if it makes nausea worse that is counterproductive. I think maybe I just had her drink too much - we'll try a tiny amount today. If the turmeric milk just doesn't work we can go with the curcumin supplements - thanks. Yes, I've got that too - so far we are on the Aloe & Probiotic. We're also doing Great Lakes Collagen powder and Vit C. Left to my own devices I'd add the rest of the Cusack protocol, slowly, but we'll see what the new ND says. I like that Facebook group. I suspect you are right - we've seen other reports from folks with EDS that diagnosis is a crap shoot. Lots of people have shared that they were diagnosed without dislocations, based on the same kind of joint mobility dd shows. For now we can live with "Joint Hypermobility Syndrom" as a diagnosis, but I definitely don't consider that definitive. It seems to be part of the KP Stone Wall - deny diagnosis so you can deny specialist referrals and treatment. I also find it annoying that the ped refuses a rheumatology referral because dd's inflammation markers are low. As if the only thing rheumatologists treat is arthritis??? But I've given up on this ped and am focusing on switching to a better one, so I'm not even engaging that with her. Thanks, everybody. Today is a new day, we'll see how it goes.

I made the Turmeric Milk today, and it made dd super nauseous. How do you modify your version? And when you say cut it back, do you mean fewer herbs or do you mean drink less of it? It seems like a good idea, but if it's going to make her this sick, it isn't going to work . . . I'd love to hear how you modify this recipe. I'm trying to focus on supporting the collagen structures first, since this seems to be such a problem area for dd. Then I think we'll look at the cytokine cascade modulators. These are good things we can start while waiting to formulate an "official" plan with an ND/MD. And will be good to continue even if we start antibiotics. Right now dd is on supplements to correct her nutritional deficiencies, support her collagen structures, and herbs for Adrenal support and digestion/GI tract healing. I just put Doctor Yourself on hold. Thanks for the suggestion.

Dd had a bad POTS symptom flare for the past 4 days, which was trying. She's doing better today. And, we had a great appointment with a PT at Kaiser. He was excellent - assessed all her joints, and says they are all hypermobile, very floppy, and told us that a lot of dd's balance issues (which I was worrying were neurological) could be explained by poor propriception at the level of the joints, caused by the hypermobility. He thinks we can do a lot with exercise to get her reconditioned and to help with her joint pain. We were very encouraged and left with a set of exercises and a next appointment. Nice to have something go well! We also have a line on a new ped who is reputed to be much better, and an appt with a Lyme-literate Naturopath who focuses on neurological issues. He's part of a practice that specializes in chronic illness with MDs on staff so if we need antibiotics or other prescriptions we can get them. We'll be able to get Craniosacral from a DO at his office, too. He's on vacation so there is a bit of a wait but I'm hoping it will be worth it. Pen, I liked the look of that Turmeric Milk shake in Buhner too, I'm definitely going to try that. Feeling a bit more settled and like I have a handle on things today. At least we have a plan for moving forward, and for getting some professional help! That's huge.

Hmm, I can't find any books with 139 in the title, but I checked my to-read list for Big Bingo for prime numbers in the title and I have the following possibilities: Three Parts Dead, Tram 83, The Thirteenth Tale, One Second After. So, a few options. This week I finished listening to The Meyers Way. She has some good suggestions, and I'm toying with the idea of the drastic elimination diet she suggests for Shannon. But it might be too stressful, given how hard it is for her to eat anyway, to restrict her diet more than is necessary. But boy I would love some quick results! I fear this book overpromises a bit, however. I also finished reading Bloodchild and other stories by Octavia Butler. Currently I'm mostly reading about Lyme disease, but when I want to turn off my analytical brain I'm dipping into Dinosaur Teeth by Michael Crichton and Lilith's Brood by Octavia Butler. Morgan and I started reading Tom Sawyer aloud, which is always fun. I feel like I'm starting to get a handle on the voluminous and often confusing literature on the relevant chronic illnesses, and to hone in on who I want to help me. So hopefully at some point soon I'll stop reading about that so obsessively and get back to reading that I want to be doing. But you do what you gotta.

I really liked that book. It definitely strikes me as the kind of book you'd like.

Thanks for sharing your story, that is very helpful. Dd's Western Blot was the same pattern as your ds's which was interpreted incorrectly, as I've found through additional research. Interesting to see that same pattern.

Wow, Spryte, holy cow. That's a great point. I will look forward to your PM. Thank you.

She tested negative for babesia, and she doesn't have recurring fever, so I think we can rule that one out. However, she does test positive for Mycoplasma pnuemoniae IgM, which the ped wants to ignore because she doesn't have upper respiratory symptoms. It didn't take me long to uncover the fact that Mycoplasma is a common Lyme co-infection. This was news to the ped. I insisted on an ID consult, which is coming up, as my ped seems clueless. I'm in the process of trying to find a good ped at Kaiser (recs from friends who are drs) who is taking new patients to try and get better primary care. Wow, diagnosed by a vet. Ironic that vets are more up on Lyme than human doctors. Also that there is a vaccine for animals but not humans . . . I'd be very interested in hearing about your treatment, whatever you are willing to share - via PM if that is more comfortable. Both the active treatment and the current long-term therapy your LLMD has recommended. Yes, it seems like "Chronic Lyme" is used to cover a variety of situations, including post-treatment and untreated conditions. But when I read about MDs that don't believe in chronic Lyme, the story seems to be - if you are treated and symptoms persist or return, then it's not Lyme, it's something else. But in my dd's case, she has never been treated. She never got sick from her known exposure (11 years ago), until 1 year ago when she suddenly did, after a short sickness with some kind of GI bug. Our first ped diagnosed her original illness (last August) as viral meningitis. Who knows, maybe she was right and that is what triggered the Lyme? It seems possible, at least. Do you know what triggered your crash?

That's what I'm trying to figure out - trying to figure out whether we will go with Buhner's approach with the assistance of the naturopath or whether to try to find a LLMD that would prescribe antibiotics. I honestly don't know yet, I'm spending multiple hours per day reading Buhner, Horowitz, and other approaches. While trying to juggle school, work, and doctor/therapy/pt appointments. I'm kind of drowning here. But I need to figure out what I want so I can figure out what kind of help I need. Working on it.

I'm in the midst of extensive research to try and understand if, and how, a past Lyme exposure might be causing my dd's symptoms. I can find information on Post Lyme Disease Syndrome - where a person is treated with antibiotics for Lyme and seems to get better, but then the symptoms return. I can find information on Chronic Lyme Disease, where despite treatment symptoms persist. What I'm having trouble finding is any evidence that a person can get exposed to Lyme, *not* be treated for it, be fine for 10 years, and then suddenly get sick with Lyme. If it's Lyme for dd, that's the most probable scenario. Has anything like that ever happened to you or your dc? Also helpful to hear about would be onset of an unexplained illness which later was determined to be Lyme (when you don't know whether the patient was ever bitten). I have an appt. with a pediatric infectious diseases specialist on Sept. 8. Trying to do as much homework as possible before then. TIA.

I'm glad you're enjoying this! And glad that MS approves :) . I loved this book. I especially loved the spider storyline, I thought that the author did so many interesting things with gender and power with those characters, particularly. And I'm glad you are persisting, it was a little hard to get started with but definitely worth it. Guys, I miss reading for fun! I'm reading two different books about Lyme and a book about Craniosacral and a book about gut health. I miss reading something I actually enjoy. I hope to get back to that at some point soon . . .

You post made me chuckle Thank you, and thanks for the suggestion.