matis_mom Posted September 17, 2010 Report Posted September 17, 2010 (edited) So I'm pretty concerned I might have LD. If I do, it's been a couple of years since onset so I was pregnant with it. My baby is perfectly healthy and happy, thank God. A couple of months ago she developed a fever out of nowhere and her fontanels were swollen so we wound up at the ER (by the time we got there her fever was 103.5) with spinal tap and all. It was ruled viral and she recovered in a few days. But now I'm reading that Lyme can cause encephalitis (coincidentally the same dx code some neurologists use for PANDAS!), and I guess what my daughter had was viral encephalitis? It's water under the bridge now and she seems perfectly fine. But I was wondering if the hospital might have kept the spinal fluid. There is no way I would put her through that to test for Lyme, but if they still have it, could I have that tested? It would answer a lot of questions for us. And also, if she did have LD, wouldn't it have shown at the hospital when they tested for infection? Thanks! Isabel Edited September 17, 2010 by mati's mom
lyme_mom Posted September 17, 2010 Report Posted September 17, 2010 They would have had to test for Lyme to know and finding Lyme via a spinal tap is not easy. Lyme doctors don't bother doing spinal taps if they suspect CNS involvement because you can get a false negative. Many doctors don't understand this. I researched this and found a comment by Joseph Burrascano describing how unreliable spinal taps for Lyme are. If u have fluid to test, its worth a try but don't count on a negative result. Lyme doesn't always show up in the test when its there. I would not do a spinal just to prove Lyme either. Not worth the risk.
sf_mom Posted September 17, 2010 Report Posted September 17, 2010 (edited) I am not sure about the spinal fluid.... BUT, I would recommend if you are worried about congenital Lyme to not vaccinate her further until things are figured out for your family. Ask Dr. B for some BACTROBAN Nasal Ointment 'Mupirocin Calcium Ointment 2%' and swab all your children's noses daily to prevent further ongoing bacteria infections from entering the body or being harbored in nose. Transmission rate with congenital Lyme is 60% so it is possible your youngest is fine. We had obvious issues with back to back colds and illnesses.... 'Kawasaki's' event, etc. Plus physical indication of auto-immune plus elevated CaM Kinase. Steroids were used with my twin pregnancy to resolve a full body rash.... same time I was having seizures. I just want to say... go about this very methodically. Test yourself first, then your symptomatic daughter...... because your son has been on long term antibiotics and there are concerns of congenital LD he might not even come back positive. Dr. B can get you starting and then depending on results follow-up with Dr. Beals. Edited September 17, 2010 by SF Mom
matis_mom Posted September 17, 2010 Author Report Posted September 17, 2010 (edited) I am not sure about the spinal fluid.... BUT, I would recommend if you are worried about congenital Lyme to not vaccinate her further until things are figured out for your family. Ask Dr. B for some BACTROBAN Nasal Ointment 'Mupirocin Calcium Ointment 2%' and swab all your children's noses daily to prevent further ongoing bacteria infections from entering the body or being harbored in nose. Transmission rate with congenital Lyme is 60% so it is possible your youngest is fine. We had obvious issues with back to back colds and illnesses.... 'Kawasaki's' event, etc. Plus physical indication of auto-immune plus elevated CaM Kinase. Steroids were used with my twin pregnancy to resolve a full body rash.... same time I was having seizures. I just want to say... go about this very methodically. Test yourself first, then your symptomatic daughter...... because your son has been on long term antibiotics and there are concerns of congenital LD he might not even come back positive. Dr. B can get you starting and then depending on results follow-up with Dr. Beals. Thanks for the reply. We have some bactroban from when dd had impetigo, I'll see if it's still good. I also have an oral mouth wash an ID had prescribed for us. It's reasurring to know it's not transferred 100%! Because of PANDAS, baby has had no vaccines at all, and I'm not planning to vaccinate. And I think the Lyme thing is probably only from 2 years ago, so I'm not too concerned about Matias having congenital Lyme, but has been in scouting since he was six, and we often visited my f-i-l, and there were deer around all the time there (btw, his wife did have Lyme!), so who knows anymore. But you are right, I need to be methodic at this or I'll be wasting time, energy, and financial resources. I am hopeful about our visit to Dr. B. My only question know is what to do about plasmapheresis! Edited September 17, 2010 by mati's mom
sf_mom Posted September 17, 2010 Report Posted September 17, 2010 My only question know is what to do about plasmapheresis! That is a tough one... can you push it back by a couple months? I know plasmapheresis has been used for Babesia with good results but they were also targeting infection with correct antibiotics as a follow-up. Again, see what Dr. B says about your concerns of LD. -Wendy
matis_mom Posted September 17, 2010 Author Report Posted September 17, 2010 My only question know is what to do about plasmapheresis! That is a tough one... can you push it back by a couple months? I know plasmapheresis has been used for Babesia with good results but they were also targeting infection with correct antibiotics as a follow-up. Again, see what Dr. B says about your concerns of LD. -Wendy My concern was more because it seems I am not responding to antibiotics to clear strep. I am worried he'll come back home and I'll still have it even while on abxs, as it happened the first time, and now after nearly a week on Biaxin, my tonsils looks just as big, and I see the begining of a white patch!
sf_mom Posted September 17, 2010 Report Posted September 17, 2010 Geez... I get your concerns now!!!! You are going to have a hard time with re-exposures. Again, I really think you need Dr. B's or Dr. L opinion on this one. -Wendy
matis_mom Posted September 17, 2010 Author Report Posted September 17, 2010 Geez... I get your concerns now!!!! You are going to have a hard time with re-exposures. Again, I really think you need Dr. B's or Dr. L opinion on this one. -Wendy I just emailed dr. Latimer, we'll she what she says. I went to my PCP and she agreed I may still have strep even though rapid is negative. More and more I think I do have Lyme, based on symptoms which coincide very well with the timeline for the different stages. She surprised me by saying she does often treat based only on symptoms and a negative test is no reason to rule it out. However, she very much goes with CDC guidelines for treatment, which I know are not enough. She started me on Cefuroxime for 30 days, I guess that will buy me some time at least. So we'll see. She does listen and give weight to symptoms, so in a month if I don't feel better and think she may be willing to try something different. She mentioned some people do need IV abx, and how she had to fight for a patient because insurance wouldn't cover it. So I am hopeful, but will continue to pursue other leads as far as docs go.
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