judith

My son had IVIG about 10 days ago. He has also been on 2 different abx daily for 13 months. My concern is the fact that he is worse now than before the IVIG, He is extremely hyper, can't be left alone at all, and is 9 yrs old, worsening of "bad ocd thoughts'tics have even come back full force. Any advice? thanks Judy

He does IVIG at his Darien office, which now includes an infusion center. My daughter's had two IVIG's and they are very compassionate. thank you for sharing!

thanks for your response! do you know if he does it in his office or at a hospital?

Could anyone tell me if Dr. Bouboulis in CT will do IVIG?

Elizabeth, Thank you so much for sharing all of your knowledge!!!!!! My son is on a good probiotic, but I still fear the C-difficile again. I was really begininning to wonder if he was antibotic resistant to these infections, but you have shed light on my fears. Dr. Jones did say it would take a minimum of 18 months to treat his lyme completely and it has only been 9. (even today he has been complaining all day of a "pumping headache" which is one of his physical symptoms from the lyme) I feel very torn myself---Lyme or PANDAS??? Hugs Judy

My son was tested for other co-infections and they all came back negative , except for a weak positive on Babesia. He actually had steroids four times BEFORE we knew he had lyme( once for asthma when he was hospitalized and three times for severe poison ivy) I will defintitey talk to Dr. J and Dr. B about my growing concerns. Thanks so much for all of your replies!! Hugs Judy

I was wondering if Dr. B might switch my son's antibiotics around. He does not do well with certain ones. I've been terrified the entire 9 months he has been on all these antibiotics, because when my son was 6 he got C-Difficle from antibiotics and was very very sick. I'm just wondering if he is antibiotic resistant because his titers are still so high after 9 months of antibiotics. thanks Judy

We see Dr. Jones in CT. My son's ocd is very severe. It's horrendous. He has shown some improvement with the abx. My son was on Flagyl for two weeks and the school called the doctors office insisting he be taken off of it because he had regressed cognitively. His writing was like a kindergarteners. He literally was just sitting in class doing nothing except for making a whining noise. Dr. Jones said he felt IVIG would be beneficial for my son, but I'm just really confused with this mess. thanks Judy

Thanks to all of you for all your help! judy

No, my son has been on the antibiotics for 9 months

Hi everyone, I was wondering if someone could shed some light on my situation before I go to my appt with Dr. B on the 28th. My son( age 8) has been being treated for lyme since last October with Zithromax and Rifampin. His physical symptoms have almost dissappeared . He was just diagnosed with PANDAS in Jan. We found out becasue his bloodwork form the lyme doctor showed he had a DNase of 960 and a strep titer of 600.He also had all the overnight severe ocd symptoms which all started one day when he was 4. We thought it was just a severe case of "bad thought" ocd. All the psych meds never did much for him. I had his titers redone last month and they were lower but still very high.His immunoglobulin level was very low. His pediatricain put him on amoxicillin for 10 days. His tics stopped in May but his ocd is awful.He is extremely agitated and irritable and when he was in school, the teachers didn't know what to do with him. He has declined dramatically. My main question is, Why aren't his titers coming down? We had the whole family do the 48 hour strep culture and we all came back negative. Does it sound like he needs IVIG? I cannot afford this.Insurance is going to cover the office visit on an out of network referral, but will not cover the IVIG. Does Dr B always want to do IVIG? Does it sound like he needs it? Thanks for any input Judy

Hi, My son has been diagnosed with both lyme and pandas. I just got his bloodwork back and it showed low globulin levels. Does anyone know why this is happening. His level dropped 6 points in 8 weeks. I don't know if I should stop one of his meds. thanks Judy

Thank you for all your replies. My son has been on the antibiotics for 5 1/2 months now. Judy

Chances are very good that with the rifampin and the zithromax your child would have a neg. strep test anyway. How long has your son been on these medications? What I wonder is if the abx's are resolving the symptoms that the other meds were prescribed for, might you be seeing SEs from those meds?

Hi, I have a question. My son has been diagnosed with Lyme,and PANDAS. He is currently on Zithromax, Rifampin, Tindamax ,Tenex, and Abilify. He was showing improvement until yesterday. He was moody, bad thoughts, whiny, etc, etc. Strep is going around his school. Even if I took him to the doctor for a strep test at this point, what would they do? Is it necessary? thank you Judy