ILiveInFlipFlops Posted October 1, 2017 Share Posted October 1, 2017 (edited) So when DD saw the LLMD, he drew blood to check for co-occurring infections. I hadn't heard anything back yet and I hadn't followed up yet because I know that kind of stuff can be slow, and we have another appt scheduled next week, so I figured if I hadn't heard anything, I'd ask then. Yesterday afternoon I got a call from our county's health department. Apparently she also tested positive for erlichiosis! They need to gather data, so I have to call them back today and give them the timeline, symptoms, etc. Thankfully, she's still not showing any adverse symptoms of any kind, not even mild ones. And she's taking the doxy like clockwork, every day, very carefully timing her eating around it for maximum effect. This has all been so crazy. I'm supremely grateful for the the rash, because otherwise we would never have known any of this and the long-term consequences would have all been so much worse. And because this kid is who she is (hates going outside, almost always wears long pants and often a light jacket, even in summer), I don't know how long it would have been before anyone suspected Lyme, of all things, and how much damage would have been done in the interim. I'm sorely tempted to write a letter to that first stupid doctor, but I know anything I say will just be chalked up to the all the fog and controversy over Lyme diagnosis and treatment. --------------------- We saw an infectious disease doctor this morning, and the diagnosis is official. He said we should take a picture of the bullseye and include it in textbooks, it's so classic. Great! So he prescribed doxy twice a day as expected, but he only gave us 14 days :glare: He said he thinks that's enough, given that she had Keflex initially and isn't showing additional symptoms yet. I asked about the three weeks that seems to be standard and 4-6 weeks that I see suggested even past that. He said that some docs will prescribe only 10 days, he prefers 14 days, 3-4 weeks is if you're symptomatic, and up to 6 weeks is if you're chronic (and if you're at the point where 6 weeks is an option, you really ought be considering IV abx instead). Does this sound right? I'm debating going for a second opinion, which will be more money out of pocket, but maybe heartache and money saved down the road. I just feel like I'm being a little hysterical about all this, but it's not something I want to linger. I want it crushed, and crushed right away! ------------------- About a month ago, DD15 came to me with an itchy, sore, red circle on the back of her calf. It looked like there was a big bite in the center, but we were having crazy mosquitoes in the yard, and they kept sneaking into the house, so I didn't think too much of it. After a few days the circle was bigger and hot and hard, so we went to the ped urgent care here, where they diagnosed cellulitis and gave her abx. It was better in 3 days and completely gone after 7. However, 4-5 days after she finished the abx, it came back. It was itchy and red, but not hot or hard. Went back to ped urgent care, and a different doc said he didn't think it was cellulitis. DD has a history of discoid eczema on her arms, so he thought it was actually that and prescribed abx and steroid creams to be used daily. She just came to show it to me (she's been using both creams regularly for about 4 days), and the red circle is now huge and looks like a bullseye. I am trying to be calm but am totally freaking out internally. This is a kid who barely leaves the house and wore long pants almost the entire summer. If this child somehow managed to get a tick bite, I'm going to have to start playing the lottery. Is it possible for the bullseye rash to show up so late in the game, even after abx made all signs of it go away initially? What do I need to know for when we go to the doctor for this? I'm looking for a LLMD right now, but I'm thinking it might be faster to go to our family doc as long as I know what needs to happen going into it. I'd love to hear what your thoughts are here. Thanks. ETA: We never saw a tick or bug of any kind, which is why we assumed mosquito, especially given the location. It's been 5 weeks since she first showed me the red spot for the first time, and she's not feeling ill in any other way. Edited October 19, 2017 by ILiveInFlipFlops Quote Link to comment Share on other sites More sharing options...
EmseB Posted October 1, 2017 Share Posted October 1, 2017 Lyme aside, I would have them culture it for MRSA (or just culture it in general, but look for MRSA). My DH had a persistent MRSA infection that came from seemingly nowhere and the doctors said that the amount of Doxycycline he took should have killed it and it was impossible for it to still be in his system, blah, blah, blah. Well, they were wrong. Any sign of fever = ER, but don't wait to go to the doc. Especially since she's had it for awhile recurrently and it's getting red and hot, it can go septic quickly. 3 Quote Link to comment Share on other sites More sharing options...
EmseB Posted October 1, 2017 Share Posted October 1, 2017 Also, if it's bacterial, the steroids are going to potentially make it worse. As I understand it, steroids reduce immune reactions. 2 Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 1, 2017 Author Share Posted October 1, 2017 Lyme aside, I would have them culture it for MRSA (or just culture it in general, but look for MRSA). My DH had a persistent MRSA infection that came from seemingly nowhere and the doctors said that the amount of Doxycycline he took should have killed it and it was impossible for it to still be in his system, blah, blah, blah. Well, they were wrong. Any sign of fever = ER, but don't wait to go to the doc. Especially since she's had it for awhile recurrently and it's getting red and hot, it can go septic quickly. That's the thing--no signs of fever or any other illness, and it's red, but not hot or sore at all, and not itchy anymore either. It's just her normal skin, but with this red bullseye :( How do they culture a skin infection that's not weeping or open? I guess just a scraping? Ringworm? Other ideas https://www.cdc.gov/lyme/signs_symptoms/rashes.html I'm pretty sure it's not ringworm. Youngest DD had that, and it wasn't much like this. That's the page I saw first, and while it looks like the first picture now, it initially looked just like the second to last picture. I'm thinking those are bad odds. Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 1, 2017 Share Posted October 1, 2017 Lyme rashes can show up 30 days after the bite but usually are not itchy. The ticks that carry Lyme are really tiny and most people don't remember the bite. 1 Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 1, 2017 Author Share Posted October 1, 2017 And as usual, not a single LLMD I can come up with is in our insurance plan. I mean, really, what the heck is the point? It's supposed to be good insurance! and we have out of network coverage, but the deductible is so high we might as well not have it at all. 1 Quote Link to comment Share on other sites More sharing options...
Farrar Posted October 1, 2017 Share Posted October 1, 2017 Document it with lots of photos if you haven't started doing that already. That's good to have whether it's Lyme or not. It honestly doesn't sound like Lyme to my inexpert read... but I will say that ds's bullseye went through a number of different stages over the course of the three weeks or so that it was visible. It did sort of fade and then come back, though it was clearly part of the healing process of the skin. Like, it was angry and red, then it faded, then the skin got all funky looking as he grew new skin, the way scabs can kind of look ickier when they're healing up. 2 Quote Link to comment Share on other sites More sharing options...
Pen Posted October 1, 2017 Share Posted October 1, 2017 (edited) To the best of my understanding: Not only ticks can carry Lyme, and mosquitoes can bite through cloth, so, personally, I'd not rule out Lyme based on long pants and no awareness of a tick bite--plus ticks like to crawl up inside of clothing, so it could have been a tick not a mosquito, or could have been a mosquito carrying Lyme. Personally if my dd presented thus, until proved not to be Lyme, I'd take a bull's eye rash to be indicative that it is probably Lyme, and get her started on Lyme treatment protocols, whether a standard pharmaceutical or a more natural herbal route, or some combo, because IME the longer Lyme sticks around the worse. I'd also look at other possibilities that it might be. Or other things that could have come instead of, or in addition to Lyme, from a probable bite of some sort. A Lyme literate MD, hard to find alas, and a good dermatologist who is familiar with her usual skin issues sound like they might be good to pursue. Edited October 1, 2017 by Pen 2 Quote Link to comment Share on other sites More sharing options...
Pen Posted October 1, 2017 Share Posted October 1, 2017 If you are going to go to a regular non LLMD doc, then research what abx are likely to work on Lyme, and how long she needs them, as well as what would be the best tests to have (though due to already being on abx and short time, it may not show antibodies at this point). And ask her doc to get her onto a correct abx and to get the right tests. I think an LLMD may be much better if you can swing it though. Unless you have an unusually wonderful doc. 2 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted October 1, 2017 Share Posted October 1, 2017 Can you post a picture of the rash? 1 Quote Link to comment Share on other sites More sharing options...
Pen Posted October 2, 2017 Share Posted October 2, 2017 Maybe this thread would help too: http://forums.welltrainedmind.com/topic/654990-chronic-lyme-its-official-update-in-107/ 1 Quote Link to comment Share on other sites More sharing options...
Chrysalis Academy Posted October 2, 2017 Share Posted October 2, 2017 We didn't figure out dd had Lyme till she'd been sick a year. At that point, it's much harder to treat. Knowing what I do now, my advice is also to treat it like Lyme. 2-4 weeks of doxy is standard of care for acute Lyme. I'd do that and then watch like a hawk for any relevant symptoms even after the abx is done and she seems asymptomatic. Hallmark Lyme symptoms are joint, muscle and/or nerve pain that moves from joint to joint rather than being static/constant in a single or a few joints. Only 1/3 of people get the "standard" bullseye rash. Most never see a tick or a rash. The standard tests (ELISA then Western Blot) give false negatives up to 2/3 of the time in early Lyme. It's hard to test for but not so hard to treat if it's acute. Later, it's much harder. Also yes - steroids can make things worse if it is Lyme. I would try to find a LLMD and if you test, go with the Western Blot through IGeneX which includes Lyme-specific bands that are omitted from other tests. Lyme sucks. I hope she doesn't have it. But I would definitely rather treat it as acute Lyme (even if I was wrong) than have it develop into full disseminated Lyme. That sucker is a bear to treat. 3 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 2, 2017 Share Posted October 2, 2017 Is there an alternative to doxy for this? (Because I am super sensitive to doxy--it makes me extremely depressed immediately--and I have heard that that is not uncommon.) 1 Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 2, 2017 Share Posted October 2, 2017 Is there an alternative to doxy for this? (Because I am super sensitive to doxy--it makes me extremely depressed immediately--and I have heard that that is not uncommon.) I don't know if there is an alternative that works as well. Doxy made me super anxious, I hated the way it made me feel. 1 Quote Link to comment Share on other sites More sharing options...
Nemom Posted October 2, 2017 Share Posted October 2, 2017 Is there an alternative to doxy for this? (Because I am super sensitive to doxy--it makes me extremely depressed immediately--and I have heard that that is not uncommon.) Minocycline will work but is not as effective as Doxy. 1 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 2, 2017 Share Posted October 2, 2017 Minocycline will work but is not as effective as Doxy. Well, all I can say is, I hope that none of your kids with Lyme react to Doxy the way I did. It was like turning a switch--in one day I got so depressed that it hurt to be alive. I took it for two days and then figured out what was happening and stopped, and felt better immediately. It was actually fairly alarming. 1 Quote Link to comment Share on other sites More sharing options...
Chrysalis Academy Posted October 2, 2017 Share Posted October 2, 2017 (edited) Is there an alternative to doxy for this? (Because I am super sensitive to doxy--it makes me extremely depressed immediately--and I have heard that that is not uncommon.) Doxy is effective because it works on intracellular forms of the bacteria. But there are alternatives - Zithromax, Biaxin; the quinolones like Cipro, or Bactrim. The penicillins & cephalosporins mostly attack the cell wall form. A lot of LLMDs will suggest using combinations for treating later disease stages. Edited October 2, 2017 by Chrysalis Academy 2 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted October 2, 2017 Share Posted October 2, 2017 Iv ceftriaxone Under 8 years old they give amoxicillin. I'm pretty sure there's another that I'm forgetting the name of as well. Ceftriaxone is also known by Rocephin. Dunno if someone will get IV Rocephin unless they are seeing a Lyme Literate MD and even then, ceftriaxone is often reserved for neuro Lyme is my understanding. Minocycline will work but is not as effective as Doxy. Still a cycline - I'm pretty sure it's incredibly close to doxy? Doxy is effective because it works on intracellular forms of the bacteria. But there are alternatives - Zithromax, Biaxin; the quinolones like Cipro, or Bactrim. The penicillins & cephalosporins mostly attack the cell wall form. A lot of LLMDs will suggest using combinations for treating later disease stages. Daptomycin is pretty common to prescribe to work as a cyst buster but needs to be used in combination with something else. 1 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted October 2, 2017 Share Posted October 2, 2017 About a month ago, DD15 came to me with an itchy, sore, red circle on the back of her calf. It looked like there was a big bite in the center, but we were having crazy mosquitoes in the yard, and they kept sneaking into the house, so I didn't think too much of it. After a few days the circle was bigger and hot and hard, so we went to the ped urgent care here, where they diagnosed cellulitis and gave her abx. It was better in 3 days and completely gone after 7. However, 4-5 days after she finished the abx, it came back. It was itchy and red, but not hot or hard. Went back to ped urgent care, and a different doc said he didn't think it was cellulitis. DD has a history of discoid eczema on her arms, so he thought it was actually that and prescribed abx and steroid creams to be used daily. She just came to show it to me (she's been using both creams regularly for about 4 days), and the red circle is now huge and looks like a bullseye. I am trying to be calm but am totally freaking out internally. This is a kid who barely leaves the house and wore long pants almost the entire summer. If this child somehow managed to get a tick bite, I'm going to have to start playing the lottery. Is it possible for the bullseye rash to show up so late in the game, even after abx made all signs of it go away initially? What do I need to know for when we go to the doctor for this? I'm looking for a LLMD right now, but I'm thinking it might be faster to go to our family doc as long as I know what needs to happen going into it. I'd love to hear what your thoughts are here. Thanks. ETA: We never saw a tick or bug of any kind, which is why we assumed mosquito, especially given the location. It's been 5 weeks since she first showed me the red spot for the first time, and she's not feeling ill in any other way. Do you have pictures of the bite at the time? Pretty hard to tell now but without flu symptoms or fatigue (without any treatment) I would be hesitant to think Lyme. Only fifty percent of folks get a rash so the absence of a rash wouldn't bug me a bit.... But no malaise, no fatigue, no crappy feeling when your guard is already up makes me more doubtful. I didn't have symptoms after my bite *however* I *did* seek (inadequate) treatment after I found a tick embedded in my stomach by my belly button. I believe the lack of useful treatment is what caused mine to go dormant and come back and "bite" me later. Just as an FYI. I suspect if I had had NO treatment, I might have ended up with symptoms initially. 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 3, 2017 Share Posted October 3, 2017 I took many, many different abx through Lyme treatment - mostly combos of two different classes at a time. I never could tolerate doxy or(shudder) flagyl. Fortunately there are many options. Both oral and IV - I did both. OP, it sounds like you caught this pretty quick. That's good! 1 Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 4, 2017 Author Share Posted October 4, 2017 Do you have pictures of the bite at the time? Pretty hard to tell now but without flu symptoms or fatigue (without any treatment) I would be hesitant to think Lyme. Only fifty percent of folks get a rash so the absence of a rash wouldn't bug me a bit.... But no malaise, no fatigue, no crappy feeling when your guard is already up makes me more doubtful. I didn't have symptoms after my bite *however* I *did* seek (inadequate) treatment after I found a tick embedded in my stomach by my belly button. I believe the lack of useful treatment is what caused mine to go dormant and come back and "bite" me later. Just as an FYI. I suspect if I had had NO treatment, I might have ended up with symptoms initially. Thanks. I didn't think to take pictures all along because I really never thought it could be Lyme! We were having such problems with mosquitoes at the time, and it looked and acted just like an inflamed mosquito bite, and then it looked and acted just like cellulitis. We don't spend a lot of time outdoors, and this kid wore long pants almost all summer, so it just never truly crossed my mind. Looking back now at the timeline, though, we were at a Six Flags the week before this all started, and I only remembered today that someone mentioned seeing a couple of ticks so to keep an eye open. I didn't connect the two until today when I started looking at my calendar to see where we'd been. She's been tired, but she also just started Zoloft, so we were attributing it to that (and the fact that we've been super busy and she has more early mornings than usual). So who knows? Well, all I can say is, I hope that none of your kids with Lyme react to Doxy the way I did. It was like turning a switch--in one day I got so depressed that it hurt to be alive. I took it for two days and then figured out what was happening and stopped, and felt better immediately. It was actually fairly alarming. Good to know. This kid is dealing with some depression and anxiety (someone above mentioned, thank you!) already, so I'll be extra vigilant. We didn't figure out dd had Lyme till she'd been sick a year. At that point, it's much harder to treat. Knowing what I do now, my advice is also to treat it like Lyme. 2-4 weeks of doxy is standard of care for acute Lyme. I'd do that and then watch like a hawk for any relevant symptoms even after the abx is done and she seems asymptomatic. Hallmark Lyme symptoms are joint, muscle and/or nerve pain that moves from joint to joint rather than being static/constant in a single or a few joints. Only 1/3 of people get the "standard" bullseye rash. Most never see a tick or a rash. The standard tests (ELISA then Western Blot) give false negatives up to 2/3 of the time in early Lyme. It's hard to test for but not so hard to treat if it's acute. Later, it's much harder. Also yes - steroids can make things worse if it is Lyme. I would try to find a LLMD and if you test, go with the Western Blot through IGeneX which includes Lyme-specific bands that are omitted from other tests. Lyme sucks. I hope she doesn't have it. But I would definitely rather treat it as acute Lyme (even if I was wrong) than have it develop into full disseminated Lyme. That sucker is a bear to treat. Thank you. She was diagnosed today. They didn't test, and from what I'm reading, it's common not to if the early signs are clear these days. Now I'm just sweating over whether two weeks is enough doxy. He wants to see her back in 14 days and he said he'd consider another week or two then, but I'm worried that if the rash is gone, he'll just consider the case closed. 3 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted October 4, 2017 Share Posted October 4, 2017 I would keep insisting on a minimum of 30 days of doxy, even without symptoms. I know some doctors think 14 days is enough, but considering the potential severity of Lyme disease, I would much rather deal with another 2 weeks of medication now than have to worry later that it hadn't been enough. 4 Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 4, 2017 Share Posted October 4, 2017 You need a minimum of 28 days to cover the life cycle of the spirochete. I would insist upon that, or find another doc to cover the extra 14 days. Easier said than done, I know. 3 Quote Link to comment Share on other sites More sharing options...
Chrysalis Academy Posted October 4, 2017 Share Posted October 4, 2017 I will be thinking about you and your dd, and sincerely hope for the best outcome for her. I know it sounds weird to say, but you are actually really lucky to have figured it out and caught it early. 1 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 4, 2017 Share Posted October 4, 2017 Well jah, any time anyone takes any medication they tend to hope they don't have an extreme and rare reaction to it. Wow. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted October 4, 2017 Share Posted October 4, 2017 Is there an alternative to doxy for this? (Because I am super sensitive to doxy--it makes me extremely depressed immediately--and I have heard that that is not uncommon.) Doxy is supposed to be the best, so I think it's worth trying it. If she has a reaction to it, the medication can be changed at that time. It's good that you posted about your reaction, though, because it was terrible, and I doubt most people know that can happen. I took doxy for months at a time over a period of years, and thank goodness I never had that reaction. Quote Link to comment Share on other sites More sharing options...
Corraleno Posted October 4, 2017 Share Posted October 4, 2017 I would not accept less than 4 full weeks of doxy, even if the rash seems better after two — the rash is not the only thing going on. Doxy is cheap and an extra two weeks is not going to hurt anything if it wasn't really necessary, but stopping at two weeks will cause a whole lot of trouble if it turns out not to have been enough. It's so stupid and short-sighted for doctors to not take this seriously. 2 Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 5, 2017 Author Share Posted October 5, 2017 (edited) Thanks again, everyone. I made another appointment with one of the three docs that people seem to recommend in our area. They were able to get us in tomorrow, and when I explained what happened today, the scheduler wasn't surprised at all. I didn't even bother calling the first doc from today. I had already asked him about additional time on the doxy and he wasn't receptive, and on top of that, he interrupted me and cut me off at least twice while I was talking during the visit (trying to explain the time line and why it had been so many weeks since we saw the first reaction). So it will be an hour's drive and $350 out of pocket tomorrow, plus more if they want to run blood tests, plus follow-up visits (plus the cost of today's visit, since we're still chipping away at our in-network deductible). I'm grateful that we're at least in a position to manage it, in spite of the fact that I also had to lay out $100 yesterday for a portable car battery charger, plus another $160 today to replace my battery unexpectedly. Blah. Hopefully I'll have a better update tomorrow. Edited October 5, 2017 by ILiveInFlipFlops 6 Quote Link to comment Share on other sites More sharing options...
MerryAtHope Posted October 5, 2017 Share Posted October 5, 2017 Thanks again, everyone. I made another appointment with one of the three docs that people seem to recommend in our area. They were able to get us in tomorrow, and when I explained what happened today, the scheduler wasn't surprised at all. I didn't even bother calling the first doc from today. I had already asked him about additional time on the doxy and he wasn't receptive, and on top of that, he interrupted me and cut me off at least twice while I was talking during the visit (trying to explain the time line and why it had been so many weeks since we saw the first reaction). So it will be an hour's drive and $350 out of pocket tomorrow, plus more if they want to run blood tests, plus follow-up visits (plus the cost of today's visit, since we're still chipping away at our in-network deductible). I'm grateful that we're at least in a position to manage it, in spite of the fact that I also had to lay out $100 yesterday for a portable car battery charger, plus another $160 today to replace my battery unexpectedly. Blah. Hopefully I'll have a better update tomorrow. I know it seems expensive, but I'm so relieved to hear you'll be going to someone recommended for treating Lyme. My husband went undiagnosed for years and is now permanently and totally disabled as a result. Treatment the first couple of years after he finally was diagnosed exceeded our mortgage payments. It's 100% worth it to get the appropriate treatment on this side when you can still get rid of Lyme. Dr. Burrascano's guidelines would put her in the "early localized" category (single erythema migrans--ie bullseye rash--with no constitutional symptoms (scroll about halfway down this page to see treatment guidelines). Children in this category treat for 6+ weeks, and adults treat until sign and symptom free for one month (so you wouldn't just stop when the rash first goes away). A good Lyme Literate MD will be able to guide you through the appropriate treatment (this article is from 2008 so there may be a newer version or updated guidelines now--but certainly not a mere 2 weeks). Praying your appointment goes well and for wisdom in treating your daughter. 3 Quote Link to comment Share on other sites More sharing options...
Pen Posted October 7, 2017 Share Posted October 7, 2017 I'm with the above posters who say it is not long enough, or at least not unless going on to some other treatment protocol after the Doxy. I'm glad you'll be getting her to a LLMD! Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 7, 2017 Author Share Posted October 7, 2017 We saw the LLMD, who of course prescribed the 30 days and also did bloodwork to look for the co-occurring tick-borne diseases. After four doses of doxy, her rash was almost gone! He did some weird thing with her arms that he said was like acupuncture without needles (no idea what that was), and he said she also has candida overgrowth (based on her white tongue) and suggested mega amounts of acidophilus. So we're well on our way to getting better, thankfully. I appreciate all the help and support. Without it I probably would have caved to the ID doc's two weeks of abx! 2 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted October 7, 2017 Share Posted October 7, 2017 We saw an infectious disease doctor this morning, and the diagnosis is official. He said we should take a picture of the bullseye and include it in textbooks, it's so classic. Great! So he prescribed doxy twice a day as expected, but he only gave us 14 days :glare: He said he thinks that's enough, given that she had Keflex initially and isn't showing additional symptoms yet. I asked about the three weeks that seems to be standard and 4-6 weeks that I see suggested even past that. He said that some docs will prescribe only 10 days, he prefers 14 days, 3-4 weeks is if you're symptomatic, and up to 6 weeks is if you're chronic (and if you're at the point where 6 weeks is an option, you really ought be considering IV abx instead). Does this sound right? I'm debating going for a second opinion, which will be more money out of pocket, but maybe heartache and money saved down the road. I just feel like I'm being a little hysterical about all this, but it's not something I want to linger. I want it crushed, and crushed right away! ------------------- I'd be ABSOLUTELY hysterical about this. Thirty days. Absolutely, positively thirty days. At fourteen you are at MY scenario - forced it into a cyst form where it hides until it decides to be nasty. It is not scientific but I've seen a lot of cases of NEURO Lyme where it was half way treated (ineffective meds, too few days) and I would suspect a link there. Nope. Thirty days. THIRTY. No exceptions. Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted October 7, 2017 Share Posted October 7, 2017 We saw the LLMD, who of course prescribed the 30 days and also did bloodwork to look for the co-occurring tick-borne diseases. After four doses of doxy, her rash was almost gone! He did some weird thing with her arms that he said was like acupuncture without needles (no idea what that was), and he said she also has candida overgrowth (based on her white tongue) and suggested mega amounts of acidophilus. So we're well on our way to getting better, thankfully. I appreciate all the help and support. Without it I probably would have caved to the ID doc's two weeks of abx! Check out Babesia. I'm just saying the test is NOT reliable and I'd go for 21 days of Atovaquone if it were me. Funny how I have gone from all drugs are bad to take all the drugs. Sad but amusing. Kind of. 2 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted October 7, 2017 Share Posted October 7, 2017 We saw the LLMD, who of course prescribed the 30 days and also did bloodwork to look for the co-occurring tick-borne diseases. After four doses of doxy, her rash was almost gone! He did some weird thing with her arms that he said was like acupuncture without needles (no idea what that was), and he said she also has candida overgrowth (based on her white tongue) and suggested mega amounts of acidophilus. So we're well on our way to getting better, thankfully. I appreciate all the help and support. Without it I probably would have caved to the ID doc's two weeks of abx! Oh gosh - I read that fast. Thought you said she had something on her arms that looked like acupuncture (red pricks) http://www.healingwell.com/community/default.aspx?f=30&m=3566123 BUT I would still be watching for co-infections. The tests for Babesia is not great. And if she has any more issues, do not rule out reinfection by nematodes. (Kind of like a co-infection at the time of the bite except a parasitic worm is transmitted - if this fascinates you then friend Thomas Grier on FB.) Quote Link to comment Share on other sites More sharing options...
Pen Posted October 7, 2017 Share Posted October 7, 2017 I'd be ABSOLUTELY hysterical about this. Thirty days. Absolutely, positively thirty days. At fourteen you are at MY scenario - forced it into a cyst form where it hides until it decides to be nasty. It is not scientific but I've seen a lot of cases of NEURO Lyme where it was half way treated (ineffective meds, too few days) and I would suspect a link there. Nope. Thirty days. THIRTY. No exceptions. Yes. Possibly a similar experience here too. Also not scientific I would still be concerned that even if abx get used 30 days, there is still the hiding out / cyst / biofilm risk, and would tend to move on, if my dc, to another protocol when abx done to try to add an attack on hidden forms as well. Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted October 7, 2017 Share Posted October 7, 2017 IME, "regular" doctors, and in particular ID docs, aren't willing to treat Lyme appropriately. It's bizarre, and I won't try to figure out why. Fact is, they won't. Your money and time is best spent finding a "Lyme Literate Medical Doctor" (either an MD or DO) who has a special interest in (properly) treating Lyme. Personally, I'd take the doxy he RX'ed, I'd take it at double dose (200 mg twice a day, I'm sure the iD doc RX'ed 100 twice a day), and then I'd work very hard to get into a LLMD by the time the week's worth of doxy runs out. The LLMD will RX more, higher dose, doxy and/or many other antibiotics. For a much longer time. I just finished my 3 months of *very* high dosages of multiple antibiotics for my case (began in May) of severe acute Lyme. I'm talking VERY high dosages. Of 2-3 ABX simultaneously, rotating through various ones, depending on the day/week. The dosages were insanely high. I took zillions of probiotics and other supplements to support my body through that "nuclear antibiotics" period, and will keep taking those supportive probiotics, etc for many more months. I survived. My Lyme symptoms are gone. I was willing to go to such extremes to treat my disease, outside of the regular medical system, because I saw just how disabling chronic Lyme can be (and my own acute Lyme was so disablingly painful that I knew that I'd die if I had to live with that pain indefinitely), and I didn't want to risk being part of that chronic Lyme club if I could at all prevent it. LLMDs generally don't accept insurance, but my RXes and labs could be paid by insurance . . . Good thing, because my ABX -- all oral -- were about $1000-1500/mo if my insurance hadn't paid (it did, and so I paid $4/each/month prescription, as they were all generics). The medical visits were about $180 per visit (per month) and I just had to go 3 times. . . Insurance might reimburse a bit, we'll see . . . I submitted the bills, but I'm not holding my breath. Supplements ran me about another 200/mo. Fortunately, I can afford that . . . my biggest costs were the 2 ER visits and 1 inpatient hospitalization that occurred while the regular medical system was missing my Lyme diagnosis (about 5k . . . in deductibles and copays . . . zeroed out our HSA, sadly). If only they'd caught the Lyme earlier . . . oh my . . . Anyway, I've met a LOT of people who have been disabled for YEARS and have pretty much accepted the inevitability of being sick for the rest of their lives, due to chronic Lyme infections. I was just really sick for a month or so from the Lyme and then another couple months of recovering while surviving the awful side effects of so many antibiotics. I am afraid of ABX and severely allergic to more than one of them, so I'm not at all an easy sell for ABX. But, I almost died from the Lyme IN MY BRAIN (meningitis, the damn bacteria IN MY BRAIN) . . . so, I'm an easy sell for ABX for Lyme. If my kid had it, I'd have them in a LLMD office IMMEDIATELY. My 2c. And, FWIW, the majority of people DO get better from just 2 weeks of low dose doxy (for acute Lyme, diagnosed within weeks to a couple months of the bite) . . . My LLMD guessed that maybe 5% don't . . . The thing is, that 5% . . . their lives are pretty much shit from them on, period. And "normal" medicine marginalizes them and won't treat them, and by the time their misery might get them to a LLMD, 6 months or 6 years later . . . it's too late to avoid "chronic" Lyme, so you're looking at years-to-lifetime of severe medical expenses and/or disability. I took my chances with nuclear ABX to minimize my chance of being in that 5% . . . Time will tell if I made the right call, and I guess we'll never know if I could have been "just fine" if I'd just taken my 21 days of low dose doxy . . . Your kid, your call. . . Please trust me when I tell you that the ID docs and the "regular" docs aren't going to help you or your kid. It's just wasting time and money to try. I was told that, and I didn't believe it . . . I went to an ID doc, a neurologist (remember, it was in my brain, and that was diagnosed at an ER) . . . "regular" primary care docs who've known me for over a decade . . . USELESS. Utterly useless. Total waste of effort. Just go to a LLMD and do what they say. IMHO. Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted October 7, 2017 Share Posted October 7, 2017 Check out Babesia. I'm just saying the test is NOT reliable and I'd go for 21 days of Atovaquone if it were me. Funny how I have gone from all drugs are bad to take all the drugs. Sad but amusing. Kind of. This is me exactly! Lyme dose that to you!! (Same with DEET . . . and permethrin . . . I used to avoid pesticides. . . Now I just want to KILL ALL THE TICKS!) Quote Link to comment Share on other sites More sharing options...
Pen Posted October 7, 2017 Share Posted October 7, 2017 ... And, FWIW, the majority of people DO get better from just 2 weeks of low dose doxy (for acute Lyme, diagnosed within weeks to a couple months of the bite) . . . "Better" or "Well"? I'm not sure we really know that 2 weeks actually is curative for majority. Some of us may be in situation of apparently better and go into a statistical sample of it seeming like short and low dose treatment is enough--thus making most reg docs ready to believe that for reasons that are other than ones to be cynical about. (Though I also am pretty cynical about standard medicine these days.) However, it may be that in many people who have had Lyme, there are hidden, lingering cyst / biofilm organisms waiting for conditions to be right for them to attack again, and likely to attack more deeply. Some of those people will then be said to have "chronic Lyme" but since std. docs and CDC etc. generally won't accept that as an official situation, then sort of by definition those people will be found to have some other thing as a diagnosis, and the fiction of a small percentage may be maintained that way, but wrongly so. It ends up very circular I think. By definition, a short course of abx is curative, so anyone who isn't cured (or relapses from it later on) must have something else. This is me exactly! Lyme dose that to you!! (Same with DEET . . . and permethrin . . . I used to avoid pesticides. . . Now I just want to KILL ALL THE TICKS!) I am still fairly anti-abx and meds--but some things, like Lyme, need the big guns, so to speak. And I sure hope we don't end up with abx resistant Lyme as part of abx overuse for things that do not warrant it, as well as oversupply in our bodies and environment from abx overuse of all sorts including treated commercial animal farm operations and so on and so forth. I am very much against pesticides as I have also had very first hand experience of their tremendous harm and dangers. We try to use other means of keeping ticks and other biters off, and then are ready with tick spoons, iodine tincture, andrographis tincture, drawing herbs and clays, and a variety of potentially helpful supplements. Despite being in rural area and having a moderate tick population with known endemic Lyme, this seems to be working. And we have our immune systems stronger than I think they would be if exposed to pesticide. Quote Link to comment Share on other sites More sharing options...
ILiveInFlipFlops Posted October 19, 2017 Author Share Posted October 19, 2017 I updated in the OP but I'll paste here as well because I know different posters prefer different methods :D So when DD saw the LLMD, he drew blood to check for co-occurring infections. I hadn't heard anything back yet and I hadn't followed up yet because I know that kind of stuff can be slow, and we have another appt scheduled next week, so I figured if I hadn't heard anything, I'd ask then. Yesterday afternoon I got a call from our county's health department. Apparently she also tested positive for erlichiosis! They need to gather data, so I have to call them back today and give them the timeline, symptoms, etc. Thankfully, she's still not showing any adverse symptoms of any kind, not even mild ones. And she's taking the doxy like clockwork, every day, very carefully timing her eating around it for maximum effect. This has all been so crazy. I'm supremely grateful for the the rash, because otherwise we would never have known any of this and the long-term consequences would have all been so much worse. And because this kid is who she is (hates going outside, almost always wears long pants and often a light jacket, even in summer), I don't know how long it would have been before anyone suspected Lyme, of all things, and how much damage would have been done in the interim. I'm sorely tempted to write a letter to that first stupid doctor, but I know anything I say will just be chalked up to the all the fog and controversy over Lyme diagnosis and treatment. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 19, 2017 Share Posted October 19, 2017 Write the doctor a letter---not in an accusatory tone, but just to share. Sometimes doctors don't hear the consequences of their bad decisions, and further experience can help them to change their practice techniques. I am speaking from personal experience of having received some really bad advice in the past. Either s/he will receive it well, or they won't, but I would send the letter to the practice manager and to the doctor. 3 Quote Link to comment Share on other sites More sharing options...
Chrysalis Academy Posted October 19, 2017 Share Posted October 19, 2017 Yes, you are very, very fortunate that she had a rash. So glad that you now have a clear diagnosis and treatment plan! And I agree, I'd send the letter too. 2 Quote Link to comment Share on other sites More sharing options...
Nemom Posted October 19, 2017 Share Posted October 19, 2017 Yes, send the letter. 1 Quote Link to comment Share on other sites More sharing options...
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