Hopeny

So sorry this happened. I can imagine how scary tvat must have been. i would echo getting a full neurology work up. It may be worth seeing a cardiologist as well in regards to the dizziness. My daughter fell at school (sort of fainted but without losing consciousness) . She had Lyme and strep at the time. At the time we thought it was from Lyme along with all the other weird Lyme symptoms. I hope you get some answers and help soon.

Last night I took my 3 YO - non PANDAS but Lyme - to urgent care because she was sticking her hand down her throat. her classmate friend is out for strep and just had her tonsils removed. Last week 3 YO was off the charts having fits and tired, not herself. We started her on Bactrim/Zith on Friday coming off Cefdinir/Zith. Throat looked fine and rapid swab was negative, however dr actually suggested that we have ASO drawn if she was still acting funny in a few days. She told me the small dose of Zith DD is on was not enough to knock out strep but could cause the swab to show up negative. I have not heard that before. then she said something like "she will be on abx for months for Lyme" LOL thinking now I should have gotten her name to consider her as a ped for the future!

I think all DD's coxsackie blisters were in her mouth/throat but I can't fully recall. I remember one was visible on the side of her mouth for sure. How did it turn out with the ped?

Coxsackie? Dd3 had blisters when she has had coxsackie (??)

Sorry this happened to you, but I agree with thenmama, I would contact pediatrician and get seen tonight, and poison control, I copied this from drugs.com side effects: Nervous system Nervous system side effects have included a decrease in tendon reflexes, muscle weakness, mental confusion, sedation, mental depression, areflexia, coma and respiratory paralysis. CNS depression, often presenting as somnolence, may be more likely and more severe in patients with renal dysfunction

Thanks I hope we can get to the point where she doesn't complain. She hates taking medicine and usually gives me a hard time. Today I put three capsules (small) in the top at one time and she washed it down. I hate making her take all this stuff but there's no alternative

I never knew such a thing existed until the customer service person at Lee Silsby mentioned it. Pill taking is a daily struggle with DD9, and I am trying to get her completely off suspensions, so I ordered one from Amazon (after calling/going to all of our local drugstores to try to find one). You put the liquid in the cup and the pill sits in a special spout on the top. when you tip the cup into your mouth the liquid washes the pill down, almost - you still have to swallow. DD said the cup does seem to make it easier than just swallowing straight with liquid, although she did manage to spit one out the first time we tried it. Tonight is the second night ever she has taken a probiotic in capsule form in 12+ months, previously I had to empty into liquid. Sharing in case this is a struggle for anyone. I also bought some spray at CVS that is supposed to make it go down easier, but we have not tried that yet. Will post if we need to use it but so far this cup is working acceptably well. I really wish I had known about this before!

Dedee I love how you handled that with the police! If its helpful I wanted to add that my DD initially did well with Amox. Then the dose was upped and timing increased to 3x per day which is the standard Lyme literate dose/frequency. DD literally started to go crazy. She told me she was afraid clothes were hurting her. And the world was a dark and dangerous place and she could not leave my side. etc. While I was desperate to have her on abx I was afraid I would have to hospitalize her so I pulled her off. A five day course of doxy brought her back from the brink. While Augmentin/Biaxin in combo seemed to help greatly, I can't see a day when I would use Amox again. In regards to the rages the Rifampin seems to have really helped that.

I am looking into this for myself

I recall Dr b told me biaxin for myco p and cipro if all else fails

I probably have a different view than many so offer it in the spirit of sharing different views, i recognize this is a complex and emotional topic and hope this does not upset anyone who has a different view/experience. After reading through many of the vaers reports I continue to fully vaccinate. In most of the reports I read, the vaccine reaction did not occur immediately but days to weeks after, so my view is its hard to link a reaction directly to the vaccine as there seem to be many other factors. Other health conditions need to be considered/evaluated as with any type of treatment. The exception is the HPV vaccine, there have been numerous adverse immediate reactions reported so I will not be giving that to either child. I do avoid thimersol and think its only common sense to space them out. My former ped missed a dtap vaccine and my then two year old contracted whooping cough. I watched her helplessly and could only pray. Fortunately for us, likely because she had had the first two vaccines, her case was mild and she recovered, others have not been so lucky. I actually then printed the vaccine scheduled self to ensure that no vaccines are skipped again. The vaers database is publicly available.

I hope this doctir is helpful for you. i agree on the changing things slowly. I try to see how manageable reactions are, if its something where child presents a danger to themselves or others I stop. My view is that any psych meds for children/adolescents should really be prescribed and monitored by a psychiatrist who had trained for years on how to manage psych meds which are extremely powerful and can both help and have serious and consequential unintended effects. Just so something to consider before adjusting psych meds

As far as I recall from Burrascano guidelines Zith on its own does nothing for Lyme. That said, DD had seemed to be doing quite well on Zith/Rifampin combo. She still had Bart symptoms (foot sole pain, numbness, eye issues) so we decided to up her dose but otherwise I basically have my kid back- she was on 75 mg Rifmapin 2x/.day. She is 9/75 pounds. I added 50 extra MG of Rifampin yesterday to ramp up to her new dose which is double the current (she had no idea I was doing so) and woke me up at 5 am today saying she had a headache and leg pain, had leg pain all day and missed school. Essentially a herx even after a year of abx and 5 months of this combo. I am not good at tracking symptoms but I don't think she has had leg pain since January, no headaches since maybe early 2012 when she started treatment. Sorry to be a downer but I was extremely disappointed today that clearly she still has a lot of Lyme/Bart going on. I am told Rifampin/Doxy is the preferred combo for Lyme/Bart but she refuses to take Doxy (suspension) because of the taste. I know others have had good results with Zith/Rifmapin and before today I probably would be more keen on the Zith part. my 3 yo has been on zith/cefdinir for several months and we are now switching to Bactrim/zith. On the positive side though kids barely got sick all winter! IMO its worth a shot, I am going to keep plowing through and hope the higher dose Rifampin is helpful

So sorry you are going through this. Do you have a psychiatrist you are working with? That would seem important to manage the effects of these meds. I don't have personal experience but I understand that Ativan works very quickly. If there are concerning symptoms I would probably stop and contact the prescribing doctor.

This refers to intravenous (IV) antibiotics (abx), which are used for Lyme and some other illnesses. They are available everywhere. Different ones may be used, Rocephin is commonly used for Lyme but there are other ones that people have begun to use. Hope this helps.

So sorry to hear this. I know how frustrating this is. I wonder myself if Tindamax reactivates Lyme spirochetes or if this is a rxn to the medicine. My (very conservative) LLMD has a view that the cyst form has never been demonstrated in vivo, only in the lab, and does not address it. I personally believe it exists though. We are using NAC and Rifampin and I am hoping that busts up any possible cysts in a mellow way. Recently I tried one drop of an anti microbial herbal med and it brought back DD's major obsessiveness/suicidal ideations. I am still trying to manage that and get her back to where we were at about 95%. Ugh. I am so furious with myself. Have you tried charcoal to try to get whatever it is out of her body? I am trying to do extra detox with Burbur and dead sea salt baths.

Fwiw despite the fact that dr b has a long wait list I find his experience as an immunologist invaluable for us. He has a deep knowledge of disease activity and antibiotics that I haven't found replicated in other specialities we have seen.

While people do see a worsening with meds from a "herx" reaction, IMO if it gets too severe you need to stop the meds and speak with the doctor. You have to be the judge of when that point is. As an example, when we started Rifampin DD9 started to have rages. I felt they were manageable and others had also experienced so I plowed through. Recently I gave her 1 drop of an anti microbial herbal medicine and in a few days she began having recurrence of suicidal ideations, something I very thankfully have not seen in about a year. I stopped it immediately. Is the ulcer from the sucking? I think so but was not sure. There is a rare syndrome to be aware of too that is a reaction to meds that has mouth sores as a symptom: http://www.drugs.com/cg/stevens-johnson-syndrome.html. My DD's have had sores/lesions inside their mouths from coxsackie, Toms toothpaste (an ingredient causes it, we stick with colgate for kids now) and possibly Lyme. I found an internet "cure" that works extremely well which is dabbing some Maalox directly onto the sore with a Qtip. I dab a few times a day including while kids are sleeping too. It seems to work within 24 hours.

I am not a doctor but from what I understand rifampin should not be used on its own to avoid drug resistance. We are using rifampin and zith combo. We did see some almost overnight improvements with other antibiotics, but with rifampin/zith treating bartonella we saw a worsening (herx) for several weeks. One option is to lower dose. You may want to ask Dr L In regards to the combo/drug resistance question.

Hi sorry you are going through this. You may want to call the nurse directly in case the teacher forgot. Our school sends notices with strep, I think it may be a NYSDOH rule but I am not sure what other states do. My DD did Herx on Rifampin and it did last a while. We plowed through it because it was manageable. Your DD's dose does seem a bit high, maybe you could speak with Dr J and ask him about 75mg 2x/day and build up to the higher dose, you may just be having too much die off. Burbur from Nutramedix seemed to work well for my DD9 in terms of Bart herx, using 5 drops in water about 2 hours away from abx. Our integrative also suggested charcoal but at that point my DD would not take capsules so I never tried it. Someone else (maybe Tu4four?) recently posted a good result with it. If the Herx gets too bad though I personally would back off, although I do think giving a lower dose a chance is worth a try. For your DD's weight the lower dose may even be better permanently if it helps. Our first visit with Dr B's office was with the PA and she brought him in to see DD because of the extremity of our case. If you have concerns you could ask PA when you are there if he can come in. Especially with the new treatment it would seem a reasonable request. Hugs to you.

Deedee the symptoms and nurses office remind me so much of last year. My recommendation is to consider a new abx. There are other options for Lyme. DD's first treatment from the ped was regular dose amox 2x/day for 28 days. She was getting better and then tanked as soon as the she went off the amox. The lyme literate ID doc we first saw put her on high dose amox, 3 times/day. She started to go downhill. During those 17 days she even told me she was afraid her clothing was going to hurt her. That was a dark day. We pushed her around Disney in a stroller with her 2 year old sister. I had to get her a cane. When she made it to school I got a daily call from the nurse. On Day 17 I thought I was going to have to commit her at the ripe age of 8, she talked about suicide constantly and was also paranoid. I was terrified to take her off but it was scarier to keep her on. We then tried 5 days of Doxy and she came back, she started to improve within 24 hours after starting Doxy. Then nothing until we finally got into Dr B thankfully and he put her on Augmetin/Biaxin which helped tremendously. I don't know what it is about that high dose amox but it caused some scary responses. Lyme doc later theorized that her bacterial load may have been too high. I don't know what it was but even though Augmentin has amox in it, there was something about that combo that really worked well together. Also my little one developed a bullseye this summer. We did six weeks of high dose amox and I was sure we had it licked. Then her WB came back CDC + with Band 39 IGM, she was complaining of fatigue and had trouble getting out of bed. We started a combo of Zith/Cefdinir and it has seemed to do the job. I am just not that convinced about the power of amox on its own, from our experience, it really did not do much. Good luck

yay!

I believe it's the same med. Dd was on doxy last summer, while she was in an indoor art camp we did go to the pool and even the beach and she was fine. Then all of a sudden she burned really badly despite tons of sunscreen and couldn't go into any sun after that. Sunscreen did not seem to make any difference. Sorry to tell you the best thing is to avoid the sun as much as possible.

Has anyone used this for a littler kid?

Thanks for the support. Smarty that is a great idea to try. I saw on lymenet that you can also take the 1 drop in liquid and divide to 4 parts, so you get 1/4 drop. I think I will try your suggestion for a while and then do the 1/4 drop. That is when I get up the guts to go back in the water This all has happened over maybe 6 days so I am hoping I didn't do too much damage and I can bring her back. Signs seem positive. We are actually using transdermal NAC and transdermal B12 so that idea makes sense. LOL our current LLMD I also find to be very conservative, despite my ID doc cousin warning me that she heard he is a "cowboy" and over aggressive.