Spryte Posted July 21, 2016 Share Posted July 21, 2016 I hate that word. Hate it. I had a terrible time fighting babesia. Honestly, DH and I thought I might die several times. DS has been ill since June. It's been a heck of a time, he's been in the hospital 4 times, and sent to a major children's hospital once. He had viral meningitis at the start, according to the ID specialist and then reactive airway disease. And he wasn't improving. Just getting sicker and sicker. So. We took him to my LLMD, who's treated him before, and knows him. He has babesiosis. I could just fall over. Other test results aren't in yet, waiting on those. Mostly, I'm relieved to have answers. A little flabbergasted that this has hit our family twice. A little stunned that it didn't occur to me, living in an endemic area, and knowing the symptoms. Any other parents of kids who've dealt with this? My own treatment was super complex, and I was an adult, so not sure my experience is going to be like DS's. I hope not! 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted July 21, 2016 Share Posted July 21, 2016 No experience, but lots of sympathy. Your poor son! I hope treatment turns out to be straightforward and as easy as possible. 1 Quote Link to comment Share on other sites More sharing options...
AnnE-girl Posted July 21, 2016 Share Posted July 21, 2016 I just had to google that. How awful! I'm glad you finally have a diagnosis though. Praying for him! 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 21, 2016 Share Posted July 21, 2016 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 21, 2016 Share Posted July 21, 2016 Oh my. Can you take him to a specialist or the same doctor that treated you if you were happy with him? 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 Oh my. Can you take him to a specialist or the same doctor that treated you if you were happy with him? Yes, thankfully. DH called and got us in with my doc right away. She technically doesn't take new patients but she knows us, and got us in immediately. She knew what to test for, got results and has already started treatment. My head knows he's in good hands, but my heart is scared. If that makes sense. 6 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted July 21, 2016 Share Posted July 21, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted July 21, 2016 Share Posted July 21, 2016 Oh, no way. I'm so sorry your family has to go through with this, but at least now you have an answer and can move forward with treatment. Quote Link to comment Share on other sites More sharing options...
Mrs_JWM Posted July 21, 2016 Share Posted July 21, 2016 I'm so sorry, Spryte. I'm glad you have an answer and that you're in good hands. ☎ Sent from my rotary phone ☎ 1 Quote Link to comment Share on other sites More sharing options...
DesertBlossom Posted July 21, 2016 Share Posted July 21, 2016 I opened this thinking it was a silly word for being baby hungry or something. I had never heard of it before. I had to google. That sounds absolutely horrible. I am so sorry! 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 I opened this thinking it was a silly word for being baby hungry or something. I had never heard of it before. I had to google. That sounds absolutely horrible. I am so sorry! I love that! Baby hungry. :) It is absolutely a silly sounding word. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 Just so everyone doesn't have to google: it's a tick-borne disease that's a cousin of malaria. It's treated with anti-malarials or anti-parasitics in combo with specific antibiotics. It's fairly common in my area, sadly, as a co-infection of Lyme Disease. Most people here don't just score Lyme from a tick, but a few other diseases at the same time. We don't have any other test results yet though. All I know for sure is babesiosis. 1 Quote Link to comment Share on other sites More sharing options...
December Posted July 21, 2016 Share Posted July 21, 2016 I hate ticks so much! We found out yesterday that my husband has Rocky Mountain Spotted Fever. It is scary! 1 Quote Link to comment Share on other sites More sharing options...
kewb Posted July 21, 2016 Share Posted July 21, 2016 Tick borne illnesses suck. 2 Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted July 21, 2016 Share Posted July 21, 2016 I'm sorry you are dealing with this! Have never heard about it, thanks for posting explanation. Is it something curable? Because Lyme doesn't fully go away, right? I know so little about tics and tic related illnesses. I hope this is something they can treat and totally goes away 1 Quote Link to comment Share on other sites More sharing options...
madteaparty Posted July 21, 2016 Share Posted July 21, 2016 Just so everyone doesn't have to google: it's a tick-borne disease that's a cousin of malaria. It's treated with anti-malarials or anti-parasitics in combo with specific antibiotics. It's fairly common in my area, sadly, as a co-infection of Lyme Disease. Most people here don't just score Lyme from a tick, but a few other diseases at the same time. We don't have any other test results yet though. All I know for sure is babesiosis. So sorry :(DH was put on 3 abx after Lyme, one was antimalarial I think. We didn't even test for babesiosis, I didn't know there was a test. Is it reliable? DH never tested positive for Lyme. Such rotten luck, I'm sorry :( 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 I'm sorry you are dealing with this! Have never heard about it, thanks for posting explanation. Is it something curable? Because Lyme doesn't fully go away, right? I know so little about tics and tic related illnesses. I hope this is something they can treat and totally goes away I think with most TBDs (tick borne diseases) - if you catch it early, it's curable. That's my hope for DS. If it goes on too long - not so much. For me, I had it for years before being diagnosed. I know that the babs doesn't go away totally, and I can't donate blood. I hope you never have to learn about TBDs. Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 So sorry :( DH was put on 3 abx after Lyme, one was antimalarial I think. We didn't even test for babesiosis, I didn't know there was a test. Is it reliable? DH never tested positive for Lyme. Such rotten luck, I'm sorry :( Yes, there's a test. The reliability probably isn't great, but a positive is significant. I bet they just treated your DH based on clinical symptoms (the cdc says it's a clinical diagnosis, I think, so no test necessary, if everything looks like it and there's history of a tick bite?). I was positive for 2 strains. Microti and WA-1. How is your DH now? Ugh. It really feels like lightning struck twice here. 1 Quote Link to comment Share on other sites More sharing options...
madteaparty Posted July 21, 2016 Share Posted July 21, 2016 Yes, there's a test. The reliability probably isn't great, but a positive is significant. I bet they just treated your DH based on clinical symptoms (the cdc says it's a clinical diagnosis, I think, so no test necessary, if everything looks like it and there's history of a tick bite?). I was positive for 2 strains. Microti and WA-1. How is your DH now? Ugh. It really feels like lightning struck twice here. DH was treated for Lyme but I'm guessing (hoping?) co-infections were considered. Treatment was harsh and made him sick but he is fine now. Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 (edited) DH was treated for Lyme but I'm guessing (hoping?) co-infections were considered. Treatment was harsh and made him sick but he is fine now.Ouch, yes, treatment stinks. I might have that wrong, about the clinical diagnosis in babesia. It's the case with Lyme, but I can't find what I thought I read about Babesia. I might have mixed that up, being tired. If they treated him with an antimalarial, he should be covered. If he's healthy now, he's good. You'd know, if he needed treatment still. The other co-infections have a lot of overlap, so the same antibiotic will cover multiple diseases. Edited July 21, 2016 by Spryte 1 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted July 21, 2016 Share Posted July 21, 2016 Oh Spryte, that sucks. I am so sorry. Hope you caught it early and treatment goes well. 1 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted July 21, 2016 Share Posted July 21, 2016 tried to pm you, says your box is full.... Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 tried to pm you, says your box is full.... I cleaned it out. :) 1 Quote Link to comment Share on other sites More sharing options...
RegGuheert Posted July 21, 2016 Share Posted July 21, 2016 He has babesiosis. Is this something different than babesia, or is it just the word that means "infected with babesia"? :grouphug: I'm very sorry to hear about your son. As you clearly know, the treatment for babesia takes four months at the bare minimum. Hopefully his infection has not gone so far that treatment becomes difficult. There was an excellent video on YouTube a few years ago by and about a young man in Canada who had Lyme and babesia and his experiences both with the disease and the difficulty of getting treatment under Canada's socialized medical system. I'll post a link if I can find it. (It's hard to find since there are now SO MANY Lyme videos there. A big change from a few years ago.) Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 21, 2016 Author Share Posted July 21, 2016 Is this something different than babesia, or is it just the word that means "infected with babesia"? :grouphug: I'm very sorry to hear about your son. As you clearly know, the treatment for babesia takes four months at the bare minimum. Hopefully his infection has not gone so far that treatment becomes difficult. There was an excellent video on YouTube a few years ago by and about a young man in Canada who had Lyme and babesia and his experiences both with the disease and the difficulty of getting treatment under Canada's socialized medical system. I'll post a link if I can find it. (It's hard to find since there are now SO MANY Lyme videos there. A big change from a few years ago.) It just means infected with babesia. I tend to use babesia or babs, usually. But the term for the actual illness, as opposed to the name for the microorganism, is babesiosis. We have an excellent LLMD. I'm so, so glad she worked us in immediately - she gave up her lunch to see him. I trust her to treat him thoroughly, but we didn't get into the logistics of how long, etc yesterday - just got everything moving in the right direction. I didn't know the 4 month number for acute illness, but am not surprised. Ugh. My own situation was different - and it took me almost 4 years to beat babs. I was (clearly) chronic and disseminated, and had a lot going on. I also had at least two strains. Mictroti was much easier than WA-1 (or Duncani, whichever one prefers). ...My hope for DS is that we caught this early, and his treatment won't be so miserable and long. FWIW, he's smiling and played yesterday. That's the best I've seen him since June! Whew. That feels good. 1 Quote Link to comment Share on other sites More sharing options...
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