bubblegum

We can't get any meds into her.She is tired of choc ice-cream,pudding....She would only take pepto x1.Then tried tums and only did it x1.(Fruit flavor)and they don't taste bad.I don't know what else to do!

SF mom,hi could you share your friends story.Did your friends child have lyme and any co-infections?I just wondered about treatment,what they used.I saw that they were better 6-7 weeks,ocd.Is vomiting from die off?We didn't give her as much stuff today but did give her a dose of Mepron so far.I didn't want her to vomit again,she vomited this morning.Thanks!

Thanks for posting above info,please update on doseage and if you can use tums!The childrens pepto taste like bazooka bubble gum,I wish they could make Mepron taste that way!

DD likes the pepto,yeah!

Melanie,So sorry for you and your son.Did they try putting heat on the area first?Steph

Do you know if the pepto is as good as the clay?I looked at pepto and it comes in bubblegum flavor which would be easier for our daughter to take probably than the clay.Thanks for the info!Steph

Hi,I work in MD near Baltimore.Would children be included?We only have our daughter and the ocd has been hard for her because she does not know other kids with ocd and feels she is weird.If it is just for parents then I would stay home with our daughter,so my husband could go,I think it would be a great support for him!Please keep us updated!Steph

I know how frustrating it is,you have a good day and then you think wow the treatments/meds are working,thank you God,and then the next day back to more symptoms and screaming.I hope that you find what will work for your child!I was talking to Elizabeth last night and it is helpful to talk to someone who understands and "has been there"Give yourself a hug for being a Great MOM.

Thanks for reply!My dear husband typed the message last night because I was on my way to work and I was thinking about what the Pharmacist said from Insurance that it came out to 1.3 gm/kg.Then I'm flipping out because she had 2 previous and the dose was lower(20 gm/day x 2 days)and this time I wanted to make sure that it was the 1.5 gm/kg.Thank you Elizabeth for confirming that the 25gm/day x 2 days is the correct dose.(This is what happens when you are tired and you drive a hour and a half to your job and it gives you too much time to think!!!!!LOL.(Oh the mg was supposed to be gm,dear husband was trying to help!)

It is so confusing and wondered if someone could help us. Our daughter is going for her third infusion and we are concerned about it being high enough dose. Dr. K believes it should be 1.5 to 2.0. She is getting IVIG over two day period at 25mg per day. I believe that is .75 per day. Can anyone please tell me if they know whether .75 and .75 over two days makes the 1.5 or should each day be 1.5. We want to be sure she is getting what she needs. Her weight is 73lbs. which is 33.18kg. Sorry this reads like a story problem but it really does lend itself to one.

Hi Smartyjones,The Herxheimer reaction is a phenomena that occurs during the treatment of lyme disease.It is thought that the cause of Herx reactions are a result of the endotoxins releasing with the introduction of antibiotics.The body's immune system then responds to the endotoxins by producing symptoms.SYMPTOMS-Temporary increase in symptoms but may also have new ones-Most common-increased joint or muscle pain,headaches,chills,fever(usually low grade),drop in blood pressure,hives and rash.A multitude of other symptoms have been described.Worth noting is that hives and rash are sometimes mistaken for an allergic reaction.It is up to physician to determine this,but with close observation and the use of medications such as Benadryl stopping antibiotics prematurely may be prevented.In more severe cases of Herx a reduction or temporary cessation of the treatment is an alternative.TIMING-This is individualistic and Herx reaction can occur within days to weeks after the onset of antibiotic therapy.In some patients they occur only once or twice if at all and others continue throughout the course of treatment,usually lessening in severity.They can occur and are more often described in cycles(every 4 weeks)and have been reported to last from days to weeks.It is beneficial to document exacerbations.Some docs use this as a guideline for treatment.Further it may help differentiate Herx reaction from normal symptoms or progression of lyme diseae.Treatment-The use of NSAIDS(Non steroidal anti inflammatory drugs),hot baths(to relieve joint and muscle pain).Of note some have found Benadryl helpful even in the absence of rash or hives.The Herx reaction is thought to indicate that the antibiotic is working.Following each worsening there may be more improvement.However,the lack of Herx reaction should not cause anxiety if symptoms are improving.Something often overlooked but can be present with similar symptoms as a herx reaction is Candida(yeast infection)Then he suggests Theralac-Probiotic.1-800-926-2961.When we asked Dr.J about Herx he stated that if you stop the med for a day then this helps.When our dd took Zithromax she couldn't sleep for a week until 8 in the morning and ocd was worse.We tried Benadryl and then Melatonin but then she got a rash and they didn't help anyway.So we took her off the Zithromax and put her back on Augmentin ES.and then things settled back down.Dr.J did not think it was Herx.DD vomited on Monday and temp 99.2 Her ocd is worse.(We had to switch to generic Augmentin ES due to they are not making the brand anymore of 600 mg)last week and we are wondering if this is causing the changes.She also just had diarrhea(We give her Floragen 3 probiotic )So it is hard to tell if she is sick and that is why she is worse.Also hard to get her to take meds.Hope the above is helpful from Dr.J,Steph

I just wanted to mention that when I sent my daughter's blood to IGenex she was on Augmentin ES 900 mg 2 x day.I did the Babesia fish one and it was +.Also bands IND 31,39, and 41++.Dr.Jones also sent blood to another lab that he uses to re-check Bartonella and BB.He knew that she is on the Augmentin.Also my daughter had a small mass on her chest that was removed in 2008.I called pathology and they are sending the paraffin block(with tissue)to Dr.J and he will send it to a lab to look for lyme.So if anyone has tissue from any kind of surgery they might want to get it checked.

Hi,How did you get your daughter to take the Mepron?Our daughter is tired of taking stuff even though we mix it in whatever will work at the time like pudding.It is only 1/2 tsp so my husband tried in syringe but she spit it out on the floor.She says it burns her tongue/throat and she also complained of the same thing when we tried Advil(liquid)and Motrin meltaways.They use Mepron to treat Malaria but also use it for Babesia.We are going to try again tomorrow.The Enula liquid is used to treat lyme/babesia.It is made by NutraMedix,they are in Jupiter Fla.So we are going to call and order it tomorrow.The enula is made from 3 different roots.Steph

Oh I just wanted to mention that when we tried Zithromax in past dd could not sleep and s/s ocd were worse.Dr.J did not feel herx reaction but adverse effect.(So she should not take it)We picked up a paper from him regarding herx reactions and I will type the info when I have time tonight.

I don't think a few days of Prednisone is harmful in regards to lyme,I did mention it while we saw Dr.J (our daughter was on Orapred every day for about 3 months and she is no longer taking it)I know that they shouldn't be on it long term due to the lyme.I hope that we can get our dd to take the Mepron,she wouldn't finish Augmentin ES this am and we are going to try to switch to tabs and crush it(You can't crush XR but regular Augmentin 875 you can)and then put it in something.DD vomited in car on way to Dr.J and now afraid she is going to vomit.The Augmentin changed from brand to generic and she knows that it taste different even though we put it in choc pudding.Also temp 99.2 while at appointment.Did Mepron help your daughter?Philamom,I tried to send you a message,if you did not get it I will try again!

We saw Dr.Jones yesterday and he is Wonderful!DD7 had a small mass removed from her chest in 2008.Dr.Jones asked for the slides from the procedure be sent to him so it can be examined for lyme.Pathology will send it to him tomorrow.(I didn't know that they keep the slides or paraffin block for years!)It will be interesting to see what comes back.I also asked about cogenital lyme(Even though my husband and my Western Blot are negative.)Dr.Jones didn't think so,you would see hypotonia at birth,irritability,and trouble eating,swallowing.(Which dd7 did not have)He was not concerned about EBV,CMV or Mycoplasma Pneumonia because they were in the past.Also DD7 is scheduled for IVIG next week with Dr.B and he said to go ahead with the treatment,that we want to treat both issues at the same time.DD7 does have Babesia(IGX test fish came back +)He did repeat labs and is checking Bartonella and BB again.He thinks they are there but didn't find them on labs yet.Also I asked him about Toxoplasmosis Gondii(Not sure if I spelled it right)and he did order it.DD7 is 73 pounds.She will start on Mepron 375 mg 2 x day.(To treat the Babesia)Also Enula liquid 1-5 drops 2 x day.You start with 1 drop for a few days and then increase it,to see how it does.You can order it from Nutra Medix.It sounds like they stay on the Mepron for at least 3 months and longer.We will get a typed report and labs sent to us,so we will have to see what else we might have to treat.I hope that this info might help someone else!Steph(Just my opinion even if you don't suspect lyme or co-infections I would send blood to IGX to rule it out,I wish we had done it sooner!)

Hi,CMV is Cytomegalovirus.I had this checked on my daughter because her cousin had a + monospot which indicates mono.Mono can be caused by EBV,CMV,or Toxiplasmosis gondii.(I didn't have the last one checked because it was already 7 tubes of blood and didn't want to add anything more!)When we got the blood drawn we also sent blood to IGX in CA.My daughters labs always showed + for bands 41 and I wanted to know does she have Lyme or not?I had questioned different Docs on this subject but never really got a straight answer.It was expensive but did show Ind bands 31,39. ++bands 41 and Babesia(Their fish one positive)We are seeing Dr.Jones in CT and if he can treat her and make her better then the $ will be worth it.I also want to send our blood to IGX but I was waiting to see what Dr.J thinks.(My husband and I have done Western Blots thru Quest or Lab corp and both were negative.)My dd7 did have a tick bite and it was almost 2 years ago.I asked her Pediatrician about it but he just blew it off.Stupid me should have taken her to another Doctor!I think my daughter had pandas/pitand prior to this but then got worse.I am going to ask about the CMV and EBV because she is not being treated for either.(Doc said it was in the past!)But how far in the past is my question?I hope Dr.J can help us and I will post what he thinks!I also appreciate any info because it has been complicated in trying to figure out what is the best way to treat our daughter.Take care,Steph

Have you checked your daughter for cmv and mycoplasma?My daughter also would complain about getting tired and then sometimes having a headache.My daughter is seeing Dr.J in CT for Lyme and I think she has it.I would always ask about bands 41 being + but never got much reponse from Doc's that we had seen.Her blood sent to IGX showed 31,39 Ind and 41 ++ Also Babesia(fish)one was +.If you haven't had your daughter checked for lyme maybe it would be helpful.Take Care!

Hi,if you have emla cream,put it on the site and wait 1/2 hour to a hour before IV stick(Or when you draw blood)and it helps so you don't feel it.(It is Lidocaine cream)Our Pediatrician ordered it.Also with the IVIG running you also want to piggyback IV fluid.(Do you know the name of IVIG to be used?And is it with Dr.B or K?)Also before treatment started we give our daughter Tylenol and Benadryl.(She uses the meltaways)Then 4 hours later give Tylenol and Benadryl again.Then that night before bed give Tylenol and Benadryl again.We took ice pops and jello for our daughter during IVIG because sometimes it is hard trying to get her to drink fluids.They will monitor your daughters blood pressure.I will say a prayer for you and your daughter.(My daughter is 7 and I know how it feels to be anxious about whether you are doing the right thing or not)

This is so awesome and brought tears!Thank God for Doctors like Dr.C and her staff.Have a safe and fun trip!(Any updates on info would be great also!!!)

Hi,Maybe I didn't send the message correctly.I just wondered what lyme Doctor you were going to see?My daughter saw one near Philly but he wasn't very helpful.(Honestly a waste of time and $)Also I wondered if you do not live to far from us,I used to live in Phila.I will try to send another message or if you can look up members and then send me a e-mail.

Hi I sent you a private message.

Hi,our dog "Bolt"was tested by our vet and he came up + for Heavy growth Beta hemolytic strep.The Vet did a mouth swab.We have 2 dogs so we treated them both with Amoxicillin for 20 days.We waited about 2 weeks and cultured them again and they were negative.(If you do a culture and sensitivities the sensitivity will tell you what antibiotic will be effective.)

Hi,we live in Lititz pa(Lancaster County)My daughters total IGA was not checked prior to her 2 IVIG's.I did ask about it after I read it here and I was reassured that everything was fine.She is scheduled for 3 rd one.Poor dd7 just had blood done but they didn't have enough blood to do it,so we have to go back to the lab.We use Gammunex because that is what Dr.K uses.Thanks for your response,I wanted to make sure we are not missing anything!

I know someone mentioned in the past about blood work that should be checked before IVIG and a Doctor had missed it.I could not find the old thread.Was it the Total IGA,IGA 1 and 2?Thanks for the help!