EBV,CMV,Lyme and OCD Conference

[bubblegum]

I really wanted to go to the OCD Conference in DC.(We live in Lititz pa)so it is not a far trip for us.DD7 has OCD that torments her alot of the time.We have seen Dr.N in NJ,Dr.L,Dr.T and Dr.B,also sent blood work to Dr.C last year.DD7 has been dx with Pandas/Pitand by Dr.B.Also last week sent blood to Igx in Ca.to do more testing for lyme.(her bands 41 have come up + with 2 different lab draws)We have a appointment with Dr.Charles Ray Jones in August.DD7 has had IVIG with Br.B 1st one in May and 2 nd one in June.She is scheduled to have 3 rd one the second week of August with Dr.B.We did not go to the conference because DD7 had blood drawn last week and EBV and CMV is +.My dd7's cousin went with us when dd7 had 2 nd IVIG (for moral support)and then the cousin was sick the next week and dx with mono(monospot was +)My husband and I also wanted to meet other families because we feel so alone in all of this!If anyone could post comments from Dr.C and Dr.K it would be awesome,I really wanted to hear if there were any updates or information that might help us.Also if anyone has advice regarding the EBV or CMV please let us know,should dd7 be on anti virals?Also any help with the possible lyme issue.Also dd7 has had mycoplasma pneumonia in the past.DD7 had to do homeboud last year from school,most of the year.We were hoping for her to be better over the summer so we could get her back into school in September.It breaks your heart to see your child suffer.DD7 is on Augmentin ES(Liquid)875mg po two times a day.(Has been on Prednisone in past.High dose was horrible and she tolerated a low dose ok)We tried Biaxin and Zithromax at different times but OCD increased and she could not sleep at all until 8 am and then would only sleep a few hours so we went back to Augmentin.Thank you for all of the people that post on here because without your help I don't know where we would be today!!!!Also did they mention if you can buy a tape of the conference?

[Fixit]

i am of no help with the info you are looking for...but can i ask how your dd is doing after her 3rd ivig..

are you seeing progress after each ivig....?

are you still doing monthly or taking a break...?

was there something that doc b is saying monthly and not waiting at least 2 months...

 

i believe EBV is treated the same as lymes as long term abx are needed...

that is why the steroid may have agrivated things????

 

also could some of your reactions be herxing??

[EAMom]

Peglem mentioned in another post that doing a combo of Rifampin and Augmentin really helped her dd. Also, another ab to try is Clindamycin. Have you checked all family members for strep (throat cultures, checking for carriers)? Does advil help?

[bubblegum]

Several months before we did IVIG dd was on Clindamycin for 10 days and ocd s/s were decreased.The bad part is that she took the liquid and the stuff is nasty.She would only do it for the 10 days.We do mix her meds in chocolate pudding( if it doesn't taste good )so she will take it.DD had 1st IVIG in May(I don't think the dose was high enough because she had gained weight from being on Orapred and also at times her OCD would tell her to eat more even though she was full.She is not doing this anymore but I hate to write it because you never know.)After the first IVIG she was able to jump rope which she could not do before and we have 2 dogs and when they bark she will scream at them to stop barking.Well after the IVIG she did stop screaming at them.She did do stuff that she hadn't done for awhile,if I was walking upstairs and she was at the top of the steps I would have to stop walking for a min("So I can do my OCD")and then I could walk up the stairs again.Also if my husband and I were talking we would have to stop talking.Before the IVIG she was wetting the bed almost every night.Now after the 2 nd IVIG it is alot better,she is using the bathroom before going to bed and getting up in the morning and using it.Before the IVIG's she would have to do OCD(just right)and would have to do something over and over again.(Like getting into the car she would have to get in and tap her feet a certain way and would have to re-do it if she didn't do it right)When she is doing ocd behavior and trying to talk to her it just makes her angry.You have to be quiet and just give her a minute.I think that at these times she is not able to process anything because of the ocd.Also before IVIG she would have to "Zap"something instead of doing ocd.She would actually say "Zap,Zap,Zap"Well she has stopped doing this.DD is scheduled to have IVIG with Dr.B the 2 nd week of August and he is giving her a higher dose.(I think the 1.5 dose)She has never come up + for strep and labs never showed anything for strep.My husband and I have done aso and anti d nase b and ours is ok.(I did test + for strep G and was treated for it months ago)Also our dog had Strep B in his mouth and we treated our 2 dogs for 20 days with Amoxicillin and then we had them re-tested and they were negative.(People thought I was crazy )when I read that you should get your dogs tested for strep and our dog"Bolt" came up +.We didn't swab"Sugar"but we treated her anyway.It was easier to have the vet order labs and Amoxicillin for the dogs then it is for us to get tested!DD recently has had good and bad days.We did give her Advil 200 mg every day for a week but hard to tell if it made a difference.She complains of the liquid burning her throat.(Last week I tried to do her throat culture because the lab can't do it(but they gave me a swab)and she wouldn't let me.She knew she was going to have blood done so she was anxious.I could only do her tongue but it didn't show anything.A 1/2 hour to a hour before labs I put Lidocaine cream(also called emla cream)on her arm and I cover it with a band-aid.So she doesn't feel the stick.(The time before this one she was worried that we were taking alot of blood and ocd kicked in.)This time she didn't mention the blood.We also gave her Benadryl before but we still had to hold her arm for a min and once the needle was in she was ok and we could let go.A few days ago she had a really good day,she was able to get her hair cut and she has not been able to do this for months.Also she let the girl wash her hair and it has been about 2 weeks since it was last washed.(My husband had to stand in the tub and draw with bathroom crayons with her and distract her so I could wash her hair.It is ocd that it be dirty and she will not let us comb it)So when we went to get her hair cut it was so knotted and she looks like she is neglected!Her hair is now shorter and cuter, but I can't wash it.She was in the tub 2 days ago and played with toys and bathtub crayons.(She always wants someone with her most of the time)She was done and in the past she would get washed up and wash her hair after playing ,but now she can't.There have been a few times if we washed her hair that she would put soap back on her hair and leave it that way because it can't be clean.She also has some other ocd stuff that she does that is now better after the IVIG's.Yesterday was a bad ocd day.(But I look at her haircut and I know we will have better days.I hope it is the saw tooth recovery that people talk about.)DD will yell at us and tell one of us to get out of the room but then a few min later she will come to you and ask"Do you still love me?"I know that this is the OCD and not her.DD is really sweet and funny.I have not had a chance to talk to Dr.B but I wonder if dd cousin having Mono and dd being + for EBV and CMV is affecting her.DD was sick a few days before 2nd IVIG.DD has complained about her stomach hurting in the past 2 weeks off and on.We do give her probiotics and childrens gummy vitamins from gnc.Also Augmentin dose is now 900 mg 2 times a day.DD cam kinase range (done last year)was in the pandas range.Oh,she had 1st Ivig in May,2 nd in the first week of June and third scheduled for 2 nd week of August.(She is low on Pneumo titers and Br.B wanted to do IVIG to boost immune system)My insurance approved 3 IVIG's and after that I don't know!(If the question is has IVIG helped my husband and I both would say yes,but of course it would be awesome if she woke up one day and OCD was gone!Will update when we know more about lyme testing results and after our visit with Dr.Jones.)Also we are going to try advil again.Oh DD was very clear after 1 st IVIG that she remembered not having OCD one day and she did the next.She was sitting on the couch talking and she brought this up.My husband and I were never really sure exactly when it started.She had been sick in pre-school and then was out because she had surgery(Mass growing on chest that was removed bu(t benign)we couldn't get her back to preschool after that.Separation anxiety and as time went on OCD increased.(She in the past also had some tic like sounds but has not done them in awhile.Also before antibiotics she would hold fingers like a claw)Sorry this is so long!Gatito's mom

[philamom]

I really wanted to go to the OCD Conference in DC.(We live in Lititz pa)so it is not a far trip for us.DD7 has OCD that torments her alot of the time.We have seen Dr.N in NJ,Dr.L,Dr.T and Dr.B,also sent blood work to Dr.C last year.DD7 has been dx with Pandas/Pitand by Dr.B.Also last week sent blood to Igx in Ca.to do more testing for lyme.(her bands 41 have come up + with 2 different lab draws)We have a appointment with Dr.Charles Ray Jones in August.DD7 has had IVIG with Br.B 1st one in May and 2 nd one in June.She is scheduled to have 3 rd one the second week of August with Dr.B.We did not go to the conference because DD7 had blood drawn last week and EBV and CMV is +.My dd7's cousin went with us when dd7 had 2 nd IVIG (for moral support)and then the cousin was sick the next week and dx with mono(monospot was +)My husband and I also wanted to meet other families because we feel so alone in all of this!If anyone could post comments from Dr.C and Dr.K it would be awesome,I really wanted to hear if there were any updates or information that might help us.Also if anyone has advice regarding the EBV or CMV please let us know,should dd7 be on anti virals?Also any help with the possible lyme issue.Also dd7 has had mycoplasma pneumonia in the past.DD7 had to do homeboud last year from school,most of the year.We were hoping for her to be better over the summer so we could get her back into school in September.It breaks your heart to see your child suffer.DD7 is on Augmentin ES(Liquid)875mg po two times a day.(Has been on Prednisone in past.High dose was horrible and she tolerated a low dose ok)We tried Biaxin and Zithromax at different times but OCD increased and she could not sleep at all until 8 am and then would only sleep a few hours so we went back to Augmentin.Thank you for all of the people that post on here because without your help I don't know where we would be today!!!!Also did they mention if you can buy a tape of the conference?

 

 

What treatment was done for your daughter's positive EBV and CMV? Let me know how you make out with your appointment next week - I'll be thinking of you. The reason your daughter's OCD increased while on Zithromax could be due to herxing. My daughter's ocd increased on Zith as well.

BTW- Where is Lititz, Pa?

Melinda

Edited July 31, 2010 by philamom

[marilina]

we are doing antiviral therapy with Acyclovir for EBV: 200mg 4 times a day

my DD18 can't react to the viralDNA of EBV

she is on Acyclovir since 1 month, and she is much better, BUT, we have started a new therapy too, to improve her immune system : TSO ( tricuris suis ova) (there is one study of NIH actually that try to register improvements in autism, OCDs, ecc....<)

so we have in fact iprovements:

- no tics

- no sleep issues

- much less anxiety

- improvements in OCDs

- improvements in mood

 

 

BUT I can't say if these improvements are connected with antiviral therapy or TSO: both toghter I think....

[caring mom]

Marilina,

 

Please excuse my ignorance, I am new to PANDAS and just trying to figure it all out. My daughter's blood work showed a positive result for EBV. It was actually rather high in my opinion (214 with the high norm being 18). When she turned about 3 1/2 she had a dramatic decrease in her energy level. She constantly complained of being tired. We had to pull her out of her gymnastics class as she was too tired to do it (and at 3 1/2 the class is not designed to exhaust the kids). She still has very low energy levels and tires out way more quickly than other kids her age. I was hoping that it was due to PANDAS and with the treatment plan she's on we would see her energy levels increase as time goes on. However, after reading that your daughter is being treated for EBV I'm wondering if I should be pursuing this as well. Her doctor said many kids her age test positive for EBV and not to worry about it. I don't understand what you mean when you say that your daughter can't react to the viralDNA of EBV. Can you please explain this to me? Thanks!

 

Caring Mom

[bubblegum]

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!

[caring mom]

Hi Gatito,

 

Thanks for responding. She was tested for myco p and came out negative. I don't know what cmv is - looked for it on her blood results but didn't see it so I'm assuming she wasn't. I haven't tested her for lyme because she when I researched it she didn't fit the symptoms. I guess I'll do some more research. Is it expensive?

[bubblegum]

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

[caring mom]

In another week and a half I have a phone conference with her dr again. I'm going to ask about the EBV again and I'll let you know if he says anything that might be of interest. Hang in there!

[smartyjones]

EBV,CMV,or Toxiplasmosis gondii

We are seeing Dr.Jones in CT

 

 

gatito - please do post what info you find from Dr. J. my son had clear strep issues when he presented with pandas behaviors. he had 100% remission with abx but backslide when off for 30 days. his western blot was completely non-reactive. after 6 months or so, i didn't feel he was on a good healing path -- just seemingly had a collection of good and bad days. i asked one of his drs if we should revisit lyme. he referred us to an integrative MD who uses something called auricular medicine -- it 's a type of acupuncture and he does a type of muscle testing with that. he first said based on symptoms, he'd think my son had lyme. when he tested him, he confirmed lyme and also found CMV and toxoplasma gondii -- which recently has been implicated in mental illnesses. what lab did you do those tests with? did your ped order them?

 

he is being treated for both those infections with homeopathy. i would have loved to have traditional medicine tests for those also, but it wasn't worth the hassle and money to then treat him the in the same manner i would have without them. still, would have been interesting. i'd be so interested in what you hear from Dr. J.

thanks.

[Suzan]

Hi, not sure if this will be helpful but my dd was tested for EBV as well as other herpies viruses. She was negative for all except HHV6 which she was very high. Our doc put her on Valtrex antiviral and it really helped her to process that virus. She was on it for 6 months and although we are still working through her issues, I feel it was a very good protocol and helped us get to the next level.

 

 

Susan

[marilina]

Marilina,

 

Please excuse my ignorance, I am new to PANDAS and just trying to figure it all out. My daughter's blood work showed a positive result for EBV. It was actually rather high in my opinion (214 with the high norm being 18). When she turned about 3 1/2 she had a dramatic decrease in her energy level. She constantly complained of being tired. We had to pull her out of her gymnastics class as she was too tired to do it (and at 3 1/2 the class is not designed to exhaust the kids). She still has very low energy levels and tires out way more quickly than other kids her age. I was hoping that it was due to PANDAS and with the treatment plan she's on we would see her energy levels increase as time goes on. However, after reading that your daughter is being treated for EBV I'm wondering if I should be pursuing this as well. Her doctor said many kids her age test positive for EBV and not to worry about it. I don't understand what you mean when you say that your daughter can't react to the viralDNA of EBV. Can you please explain this to me? Thanks!

 

Caring Mom

 

I escuse me for my English

for the "low energy issues" I think you have to check her about mithocondrial issues : these are childs with "energy issues", ipotonic muscles issues, ecc......

EBV: when you do the test, usually there are more data:

EBV IgM

EBV VCA-IgG

EBV EBNA-IgG

when you see high EBV IgM the infecion is occurring

when you see high EBV VCA-IgG it means that she has had this infection in the past: EBV VCA: are antibodies against the capsid of the virus, the coating of the virus

usually when you have high EBV-VCA antibodies you have high EBV EBNA IgG too, because the body produces antibodies even against the viralDNA: EBNA are antibodies against the DNA of the EBVvirus.

my daughter can't produce antibodies against the viral DNA: due to immunodeficences she can't fight viruses........that's the why we have to help her with antiviral therapy.

hope this helps