Tamistwins

We see dr. J originally he was going to prescribe bactrim but we have a sulfur allergy so we r on rifampin.

Jenbug I would have him retested not only a rapid but also cultured for 72 hours at lab . My daughter does the same thing will scream , cry whine all day over the stupidest thing. It is an OCD obsessive thing. My daughter has pandas and Lyme. I empathize it is very hard to live with I feel same way. Gl, Tami

Dr jones also uses specialty lab to test for bartonella.

Keep an eye on the pimples/ rash alot of people can be allergic to bactrim it's actually sulfur what they are allergic too. Can you try giving benadryl see if it helps with the outbreak?

I'm so sorry you have to deal with this on top of everything else. I am also in nj and have twins going into 2nd grade. I was told not to vaccinate anymore so I am very curious if anyone knows how to deal with this situation. Where in nj are u? Please keep me in mind if anyone gives you the info you are seeking. Good luck! Tami

So happy for you Wilma!

My 40 pound 7 yr old took 1 tsp of 250 mg 2x a day.

Wonderful news Wilma, that's great.

Dr. B put her on 6 days steroids two weeks ago, 30 mg. once a day. They did not budge her! Then he switched her abx the following week, thinking she might have developed resistance to the augmentin. Also still on zithromax, tindamax on weekends, bactrim. No clue here!!! Hi Laure, My twins b/g both present with typical pandas symptoms. My son started with more severe ocd than my daughter but looks like she's catching up to him. The ocd is unbearable. We have tried so many antibiotics which have helped with certain things but the ocd is still there and getting worse. My daughter tested positive for lyme so we also are patients of Dr. J. My son never tested positive but clinically being treated for bartonella. We were on Omnicef, tindamax, rifampin and azith. I saw no improvements whatsoever. Whenever I would email symptoms and complaints I was told it was herxing. We began treatment 2/24 and then May 2 I took my son to the e.r. because he looked so ill and had a very deep cough. i felt it was mycoplasma because aside from numerous strep infections he has a problem with mycoplasma. may 3rd I took both kids off of all the meds and they are on cipro for 10 days. The labwork in hospital showed he was positive for strep even after being on all those medications that Dr. J had him take. His aso was 200 on 5/2/11, we ran blood work again on May 10 and aso went down to 100. Cipro is a strong antibiotic and can also be used to treat bartonella. We did IVIG last wed so I am seeing a worsening of symptoms now. But I am so frustrated all these years all the meds, the IVIG and still in ######. I wish I had the answers. ALl I can say is hang in there.

I agree, def make sure Dr. B speaks to the psychiatrist. If they don't believe you and feel she is a danger to herself and others they may take it upon themselves to admit her without your consent. Praying for you!

Wilma I am so sorry for all your troubles. I pray your child gets well soon. Please email me tamistwins@gmail.com Tami

So great to hear... What alternatives are u using?

That is so nice to hear. My 23 month old expresses his needs so much better than his 8 yr old siblings and it's because for him we caught pandas early and began treatment. I wish my older two were healed already,i can't take much more of this. As much as I talk and explain it's like I'm talking to the wall. They get into these fits where they just whine about something and dont explain what it is that they want...so frustrating and so wonderful to hear that a 3 1/2 year old can express his feelings so well.

Just my humble opinion: I think in your situation, if I was you, and my dd6 had a tick on her head for 12-15 hours last Fall, I would do the intital test for Lyme. I think if you don't, it will be in the back of your head forever, nagging you. I am not testing my dd6 for Lyme. I will tell you why I am not thinking Lyme: We have a strep timeline history, following a strep infection when my dd was 2 yr. 3 months old, that was treated w/amoxicillian, that I never followed up on, and everything pandas happened after that (also had exposure to strep as an infant in daycare, then jump off the head growth chart, and unexplained fevers- could have been from excessive vaccines, though, whacking out her immune system.) We live in a non Lyme area, always have. My dd has been very sheltered- never out camping, in the woods, we have never owned a family pet. There is no way she has ever had a tick on her. My DH and I are in our mid-40's, have never remembered a tick bite, and have no symptoms whatsoever of Lyme. Neither does my 13 yr. old son, or other dd4. We've had no herx with antibiotics, nor an awful 'herx' that seemed unduly with IVIG- just the brutual saw tooth of the first IVIG. Sometimes on this board I feel I might be re-miss, or maybe others think I'm 'fooling myself.' But it's my intuition and belief, we don't have Lyme. I have twins b/g who were the sweetest, affectionate enjoyable children. Before the age of 2 I insisted on a throat culture even though it is unlikely to get strep at such a young age. They both were positive, doctor was shocked because they didn't present with typical symptoms. This is when my life was beginning to be turned upside down. They were cranky, irritable often my son presented the worse.. Giving me a hard time to get dressed, go in shower which he previously loved. I thought this is terrible twos but it never ended. Both of them kept getting strep numerous amounts of time. I asked ped about it and they said some kid s are more suceptible. I couldn't leave anywhere without them screaming and running out the door, my life was and is a nightmare. One day 4 or 5 yrs oldmy son started screaming from bathroom ok..I said what's OK he said just okkkkkk. I then took him to a psychiatrist for ocd it consumed his life he had no enjoyment. Meds didn't work then we went to neurologist because he began banging his head on hard objects, kissing tic, vocal noises, touching everything and many more things that I rather not even recall. Turns out he had a stubborn strep infection that didn't clear after 10 days antibiotics. At this point I knew of pandas and I went to one of the specialist. Head banging stopped, things came and went but never back to normal. Rages,odd. My life is ######, can't go anywhere can't do playdates. We did steroids no improvement. We did 2 hd ivig only worsening. My kids are not in the woods, we live in nj, never saw a tick would never dream of lyme. We have 3 doctors diagnoses of pandas. We had too many known strep infections to count. Yet after not doing well with antibiotic and ivig treatment we did igenex testing thanks to the members who do mention lyme again. Turns out my daughter who has lined up her toys, washed hand alot due to frequent innovation and other than that was pretty easy child has positive lyme. My son wasn't positive but has clinical diagnoses of bartonella. He also has mycoplasma. They are both on lyme medication by an llmd. My daughter now is the nastiness I have ever seen she has rages,odd. Between the two of them it is a crazy house. Always screaming and dysfunctional. But, at school they apparently hold it together. My daughter has developed new tics and I'm praying the herxing will soon pass. I know pandas came first.. Pandas is not lyme but due to a compromised immune system I'm sure it makes it easier to pick up other illnesses and harder to rid the system of it. Lets face it tics are growing I just saw a report on the news about it. So it can not hurt to examine every angle. I am grateful for this forum and grateful for people that enlighten us to other illnesses which may prevent healing with pandas treatment alone. I think everyone on here just wants to help their children being aware never hurt anyone.

I hear you I am so sorry it is so hard to lead a normal sane life with all that we have to go through. We planned on driving down to Fl for spring break when things were not so extreme and now I am dreading the trip. To spend so much money that we don't have just to be miserable. I have 3 children, twins they will be 8 next month a nd a 22 month old. They are all being treated for pandas and the twins for lyme/ bartonella. Life is unbearable. The yelling, rages, demand, nastiness. I pretty much can't go anywhere. But, my little one needs to go places as I took the twins places to enjoy. Now nothing is enjoyable. I hear you about just leaving her be.. All the talking, praising, giving,disciplining... Nothing works. My kids are late to school every day nothing I can do to get them there on time they just don't care it is so odd. Praying for us all but no ones listening.

T Mom I also have a child with extreme odd and sounds pretty much like your description, how do u handle the behavior.. Any suggestions?

Hi Dedee, That is wonderful news that you found azithromycin in a cream form. How and where do you administer? I pray for continued healing for your family! Tami

Oh thought u said why lol yes for mycoplasma

Because it seemed like we couldn't get rid of it. Every lab work showed elevation of both igg and igm. Cipro is strong we had tried azithro and biaxin and didn't clear it.

Hi, Dr. T gave my son cipro too, after being on azithromycin and then biaxin. We never retested but I think at that time he did improve, I'm wondering if he has mycoplasma again because his ocd is crazy. We are treating for bartonella via clinical diagnosis so may just be herxing. I hope it helps your son. By the way I took cipro for uti and pediatrician said was OK to continue breastfeeding.

Hi, Dr. T gave my son cipro too, after being on azithromycin and then biaxin. We never retested but I think at that time he did improve, I'm wondering if he has mycoplasma again because his ocd is crazy. We are treating for bartonella via clinical diagnosis so may just be herxing. I hope it helps your son. By the way I took cipro for uti and pediatrician said was OK to continue breastfeeding.

Hi I'm in a rush, but did read your post and wanted to say how sorry I am that your father passed away. I know it must be an added difficult time to all your additional struggles. Hugs.. Tami

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Amazing news for your family!

Philly PA I'm so sorry that this happened to you I can imagine how you must feel. I don't know anything about it but I just wanted to send you a cyber hug and wish your son a happy birthday and many more happy, healthy years to come. Take care, Tami