AlmostEmptyNest Posted March 15, 2017 Share Posted March 15, 2017 Hi all, Can you even stand another post about Lyme? I apologize if this topic has been beat to death. My daughter, age 16, was diagnosed with Lyme about a month ago. It is in the acute phase. I am very happy with the doctor who is treating her and, realizing it is important to have the right type of doctor (LLMD), I do have the names of two other doctors who I will switch to if at any point I need another option. Oh my word, my poor girl is so fatigued since starting the treatment. She barely has enough energy to keep up with her classes. As I type this, she is at her co-op classes and will crash when she gets home. The problem is, and here is where I lay awake and start to panic, she is in her junior year of high school. She will take the ACT (again) in April. She will take her driver's exam soon. She wants to take some college courses during her senior year. And speaking of college, she will begin applying to schools this fall. How will she even have a strong enough application? Even if she gets a decent ACT score, she will not have many hours of volunteering, working or extra-curriculuars to put on an application. She was planning on using her time this summer to work and volunteer, and at this point, we just don't know when she will feel well enough to do those things. Right now we are so day-to-day focused. We never know how she will feel until she gets up in the morning, and then we adjust her schedule as needed. But every now and then I try to look at the big picture and I panic. We have no idea how long it will be until she feels better. Stories of Lyme horror are all over the internet, and even my friends in real life gasp when I tell them the diagnosis. Several friends have passed along the names of people they know who have lived through hell with the disease, telling me to contact them and get information. The thing is, I don't need more horror stories right now. My own life is stressful enough. I need some stories of hope. Stories of people who have recovered and who are functioning in the world. I need to know that those situations exist. Anyone have such a story that they would care to share? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
MEmama Posted March 15, 2017 Share Posted March 15, 2017 DS was diagnosed with Lyme probably a year after he was infected (so they think, due to the way it presented itself). He took 8 weeks of doxy iirc and recovered completely as far as anyone can tell. We were told that kids often bounce back much better than adults. Also, we found a LLMD to be totally useless. This board taught me far, far more than she knew. 3 Quote Link to comment Share on other sites More sharing options...
Butter Posted March 15, 2017 Share Posted March 15, 2017 I was diagnosed with Lyme while it was in the acute phase. I had two littles (second child was under one). I don't actually remember the summer of 2002. I was SO sick. But I recovered. There are some weird issues leftover, like it robbed me of many of my memories, but a lot of those have come back. I haven't had anything I'd say were caused by the Lyme Disease in probably a decade. My mom, dad, and middle son have also all been diagnosed in the acute phase (yay for living in the middle of the woods in Maryland!) and all have recovered fully as well. The first few months were hard, though. 4 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 15, 2017 Share Posted March 15, 2017 I *was* a horror story. But even being one - I am well now. It took years, but I was not an acute case. The point I'm making is - even with that, I'm well. :) My DS has twice had acute Lyme - and he is well now. The first with a bullseye, quick recovery. The second time he had co-infections and viral meningitis complicating things. That took longer. But he's well now. You have an LLMD. She's getting good care. You know about herxing, yes? Give her good supportive care while she's fighting this. Lots of rest, fluids (there's a tendency to get dehydrated and that will make her feel much worse), good supplements rx'd by the LLMD, good probiotics and S. Boulardii. She will get through this, and so will you. 5 Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted March 15, 2017 Share Posted March 15, 2017 My son and husband were both diagnosed while being tested for cancers (so, symptomatic, but no recollection of the classic rash.) Both have been fine after treatment. I think it may have messed up ds's taste buds, but no other complaints. DD was treated based on a bullseye-like rash at a known bite site, but no symptoms and no test. She's fine, too. 1 Quote Link to comment Share on other sites More sharing options...
madteaparty Posted March 15, 2017 Share Posted March 15, 2017 (edited) I'm very reluctant to share this because I don't want to jinx my luck (as we live in an endemic area and never out of the woods with Lyme) but: A couple of years ago i was in Paris with my son when I get a phone call telling me my flight had been changed because DH was deathly ill. Now this is a guy that never ever complains of anything physical ever. He was so sick, he could not take care of our little DD, his parents were driving in from the Midwest, etc. it was very very bad. In retrospect, it was a good thing he crashed so precipitously because if he had had the slow decline that Lyme usually presents, he would have dismissed it and not sought treatment. His Lyme specialist thinks he was bit near a lymph node, hence the crash. He was put on a extreme regime of three meds, and one of them (I think it was the antimalarial) was making him feel even worse than the Lyme. He stopped that one early otherwise he did his 6 weeks. He has been completely fine since. 100%. My FIL also took a tick home with him, despite dire warnings. He had much smaller symptoms, and was put on only one ABX but he also healed much like you heal from the flu. Sorry you have to deal, but I know more good Lyme outcomes than I know chronic ones. Edited March 16, 2017 by madteaparty 4 Quote Link to comment Share on other sites More sharing options...
mamaofgirls Posted March 15, 2017 Share Posted March 15, 2017 I have had it twice... the first time I was treated and then fine the second time I was nursing my 1 year old and opted for amoxicillin instead of doxy - it did not work and so I weaned and did a full 4 weeks of doxy. I have been fine since then :) I am not too scared of lymes, we are in a heavy area and treatment always seems to work with the people I know (sometimes it takes two rounds though...). 2 Quote Link to comment Share on other sites More sharing options...
Selkie Posted March 15, 2017 Share Posted March 15, 2017 Lyme is very common where we live. I know many people who've had it and they are all fine. My son was very ill with it a few years ago but recovered quickly with antibiotics and has had no problems since then. I hope your daughter feels better soon! 2 Quote Link to comment Share on other sites More sharing options...
Mergath Posted March 15, 2017 Share Posted March 15, 2017 I'm not sure which stage is the acute stage, but I ended up with stage two Lyme a few years ago. I had the tick, the bullseye rash, the flu symptoms, and of course, like an idiot, I figured it would go away on its own and ignored it. Then, several months later, I felt horrible. I was exhausted to the point that I wondered if I had mono, couldn't think, just generally felt like crap in a million different ways. I went to the doctor this time and got a month (I think?) of antibiotics and after that was fine. No horror story. Just a lot of really big pills. :P The people who have experiences similar to mine don't tend to talk about it online because it's kind of anticlimactic, which is why it seems like it's all horror stories. It's not. 6 Quote Link to comment Share on other sites More sharing options...
Farrar Posted March 15, 2017 Share Posted March 15, 2017 Ds had the acute version - very classic. He threw up, ran a crazy fever, was just out for days. But he had the bulls eye and got treated and recovered really quickly as well. We know so many people who have had Lyme and most of them are not horror stories, even if they had a horror month or two. Or a slow slide of a few years before eventual diagnosis. 3 Quote Link to comment Share on other sites More sharing options...
MEmama Posted March 15, 2017 Share Posted March 15, 2017 I think it may have messed up ds's taste buds, but no other complaints. . I had that happen on doxy. It took at least a month or maybe a few to regain my full sense of taste, but eventually it did come back. I was only on the doxy for a few days; the taste thing freaked me out so I stopped taking it (NOT for Lyme). Quote Link to comment Share on other sites More sharing options...
Jenn in FL Posted March 15, 2017 Share Posted March 15, 2017 Oh my word, my poor girl is so fatigued since starting the treatment. She barely has enough energy to keep up with her classes. As I type this, she is at her co-op classes and will crash when she gets home. The problem is, and here is where I lay awake and start to panic, she is in her junior year of high school. She will take the ACT (again) in April. She will take her driver's exam soon. She wants to take some college courses during her senior year. And speaking of college, she will begin applying to schools this fall. How will she even have a strong enough application? Even if she gets a decent ACT score, she will not have many hours of volunteering, working or extra-curriculuars to put on an application. She was planning on using her time this summer to work and volunteer, and at this point, we just don't know when she will feel well enough to do those things. :grouphug: :grouphug: :grouphug: First step, BREATHE! Repeat as necessary. :laugh: Obviously you have multiple reasons to be stressed and concerned, but re: college apps, IMHO not so much. My youngest dd, (now 21 and a senior at UF) was diagnosed with a GI disease (and she's not the only one here :closedeyes: ) and we were in the exact same boat with regard to volunteer activities and extracurriculars. It was utterly impossible to commit in advance and we often had little to no warning when a "flare" was going to occur. Our solution was multifold in nature... First of all, we created projects and activities that dd was able to participate in from home. We created our own Ornithology Club and set out multiple bird feeders and dd kept regular logs of sightings and participated in the annual Project Feederwatch and the Great American Backyard Bird Count etc. We began our own Classic Lit Book Club with a concentration in timeless literary classics. We read and discussed classic books of her choosing and FWI: there is no law or statute that defines how many members constitute a book club...lol. We made a weekly oral presentations one of the requirements of the Book Club for those members intending to list it on a college application. (Mommas with degrees were exempt from this requirement!) Secondly, we reached out to a variety of volunteer opportunities and explained dd's situation and several were very willing to help or create helpful tasks that could be completed at home. Also, most were willing to allow "participation when able." Our experience was that people were very accommodating when we were open and honest and VERY polite when asking for their assistance. :coolgleamA: Thirdly, my dd directly explained her medical diagnosis that limited her volunteerism and extracurriculars on her college application itself. Her stance was "Just because you can't do something, does not mean you can't do anything." The university "heard her voice" and she was admitted. Through a combination of both the passage of time and amazing meds, dd's health improved significantly. Fast forward to the present: she has been a competitive varsity fencer for four years, has done a study abroad in Ireland, has competed internationally as a fencer, and best of all, this determined little missy will graduate from the University of Florida this spring. :party: You guys will get through this trying time. JUST BREATHE!!! :grouphug: :grouphug: :grouphug: 7 Quote Link to comment Share on other sites More sharing options...
AlmostEmptyNest Posted March 16, 2017 Author Share Posted March 16, 2017 Oh, wow! A big thank you to each of you for sharing your stories and encouragement! Reading these posts has lifted my spirits this evening and I will keep coming back to this post whenever I feel discouraged. :) :grouphug: :grouphug: :grouphug: Jenn in FL - thanks so much for sharing your experience and the good outcome. Congrats to your dd for her success in college! Oftentimes it takes an outside person to help me think outside the box and you've given me some great ideas and calmed my anxiety. Thank you again! I appreciate each one of you. Thanks again. 6 Quote Link to comment Share on other sites More sharing options...
mamaofgirls Posted March 16, 2017 Share Posted March 16, 2017 I had that happen on doxy. It took at least a month or maybe a few to regain my full sense of taste, but eventually it did come back. I was only on the doxy for a few days; the taste thing freaked me out so I stopped taking it (NOT for Lyme). That is crazy! The doxy really messed up my eyes... just while I was on it, things were so blurry (I have perfect eye sight normally) and could not see anything clearly. Did you notice that? Quote Link to comment Share on other sites More sharing options...
Suzanne in ABQ Posted March 16, 2017 Share Posted March 16, 2017 https://www.facebook.com/Lyme-Voice-1557989807801733/ 1 Quote Link to comment Share on other sites More sharing options...
HTRMom Posted March 16, 2017 Share Posted March 16, 2017 I have a friend who had to take a whole year off in high school but went to college, became a great teacher and was in a convent when we met. No long term life destruction. Sent from my iPhone using Tapatalk 2 Quote Link to comment Share on other sites More sharing options...
MEmama Posted March 16, 2017 Share Posted March 16, 2017 That is crazy! The doxy really messed up my eyes... just while I was on it, things were so blurry (I have perfect eye sight normally) and could not see anything clearly. Did you notice that? No, I didn't have that reaction. That must have been really frightening! DS didn't have any side effects at all. It's weird how some medications can affect an individual; a different antibiotic (a separate occasion) caused me to experience severe depression. It was unbelievably scary. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted March 16, 2017 Share Posted March 16, 2017 I have had one daughter with undiagnosed Lyme, like Spryte, it was a long hard battle and truthfully, she will always have a few issues but she is vastly better now, engaged to be married, working two jobs. She never finished high school though. She might continue her education, she may not, it's up to her. The point is she is alive and well and there were a few times we were not sure that was going to be the case. Youngest we caught much faster when she got it and it was rough but she is doing just fine, came through with flying colors, high honors now, heading to dual credit next year. Every scenario is different, there are so many variables, but she will absolutely get through this. I am sure she is exhausted poor thing. Supportive care and detoxing helps a ton. Epson salt baths helped enormously. (saltworks.com has it in bulk for much less cost than anyone else) Nutramedix's burbur and pinella mix also was one of our go to's for herxing. I'm sure you have her on probiotics already. If she is on doxycycline and having stomach issues, DGL chewables taken before the dose helped our youngest enormously to be able to handle it. If she needs to sleep, let her sleep to the extent possible, her body is fighting an exhausting battle. Deep breaths, many hugs to you both. 6 Quote Link to comment Share on other sites More sharing options...
ElizabethB Posted March 16, 2017 Share Posted March 16, 2017 Her volunteering could even be Lyme related--it sounds like there is a need for compiling and sharing Lyme stories of hope online and maybe eventually it could turn into a book. This could be easy to do from home once she is feeling better and would be encouraging reading when she is feeling a bit better but not well enough to do much with them. I will say prayers for a quick full recovery. 2 Quote Link to comment Share on other sites More sharing options...
emcap Posted March 17, 2017 Share Posted March 17, 2017 Just wanted to add our story. My son was diagnosed with Lyme meningitis last summer, we are not sure how long he had it, according to the ophthalmologist he had been sick a long time. We/docs just couldn't figure out his symptoms. He was put on doxy and it was so horrible for him. He would scream in pain, his elbows and shoulders hurt so much. We tried different doses and types of doxy with no improvement. Finally he had a picc line inserted and we gave ceftriaxone twice daily. He was absolutely a different kid. The joint aches were not from the Lyme, it is a possible side effect of doxy. He is completely recovered now, we saw his neurologist for the final time last week and she was very pleased. He no longer needs his infectious disease doc and one more ophtho appt and we should be done. My point is that complete recovery is absolutely within reach, also maybe there is a treatment option that would be better for her. I'm don't know what she is getting right now, but my kids absolutely will never have doxy again. It also threw off his bicarb level and we had to supplement that. I feel guilty for the two weeks he was on it and I didn't throw enough of a fit at the docs to get him something else. They didn't believe it could cause so much pain. Sorry for rambling, it was a rough six months, but I have my boy back now 3 Quote Link to comment Share on other sites More sharing options...
AlmostEmptyNest Posted March 17, 2017 Author Share Posted March 17, 2017 Just wanted to add our story. My son was diagnosed with Lyme meningitis last summer, we are not sure how long he had it, according to the ophthalmologist he had been sick a long time. We/docs just couldn't figure out his symptoms. He was put on doxy and it was so horrible for him. He would scream in pain, his elbows and shoulders hurt so much. We tried different doses and types of doxy with no improvement. Finally he had a picc line inserted and we gave ceftriaxone twice daily. He was absolutely a different kid. The joint aches were not from the Lyme, it is a possible side effect of doxy. He is completely recovered now, we saw his neurologist for the final time last week and she was very pleased. He no longer needs his infectious disease doc and one more ophtho appt and we should be done. My point is that complete recovery is absolutely within reach, also maybe there is a treatment option that would be better for her. I'm don't know what she is getting right now, but my kids absolutely will never have doxy again. It also threw off his bicarb level and we had to supplement that. I feel guilty for the two weeks he was on it and I didn't throw enough of a fit at the docs to get him something else. They didn't believe it could cause so much pain. Sorry for rambling, it was a rough six months, but I have my boy back now Hi emcap, Thank you for sharing your story. I am sorry your son was so sick but very glad to hear he has recovered. That is great news! My daughter had first been taking high doses of doxycycline. She was very sick to her stomach on it, to the point where she had to stay home from many classes and activities. Just one week ago the doctor took her off of it and gave a different antibiotic (the name escapes me at the moment). She hasn't had a bit of nausea since! From the other experiences people are sharing, it seems as if doxy has a lot of side effects that are really harsh. The other good news for my daughter is that over the past week, I have seen fewer days of major fatigue and more days of moderate and even mild fatigue. Glimmers of hope each day! All of these stories have been helping me feel encouraged. Thanks again to everyone! 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 18, 2017 Share Posted March 18, 2017 (edited) Oh, you know what? I had to have long-term Lyme treatment and I could never tolerate doxy. Never. Nor flagyl (shudder). There are lots of options, fortunately. Edited March 18, 2017 by Spryte 2 Quote Link to comment Share on other sites More sharing options...
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