MomofJacob

Could he actually have a long term syphilis infection? What bands would indicate that it is not syphilis?

My son had a positive IGeneX LD test and also has a positive Mycoplasm Pneunomiae (MP) IgM. I am confused about the link between LD and MP and welcome any comments or suggestions.

Can anyone tell me if the CamKinase protein and PANDAS/PITAND symptoms should go away after enough time on antibiotics? We have only been doing abx for 6 months and have seen great improvements in awareness and short-term memory but increased body movements. He is taking Azith. 250mg 3x week.

Our son has been Rxd Vyvanse for his severe lack of attention. Has anyone had experience with this med? He had a positive IgM for Mycoplasm pneumoniae, high CamKinase score (194), positive IGeneX IgM for Lyme (very high band 41) and is on Azithromycin 250mg 3x week. He is taking .25mg of Risperidone. I greatly appreciate any information given.

We have had a positive IgG from IGeneX and, at the advice of Dr. Murakami in BC, we are also testing our son's Babesia level through IGeneX. Anyone else have the babesia test done?

Today I asked for a sign that our son would get better. Maybe reading these stories is it...I am going to the dr. on Tuesday for Mepron as per advice of a lyme dr. in BC. He believes the IGeneX lab results, as well as symptomology, leads him to believe our son has babesia.

I was a dog groomer for years and came into contact with more tics (dead and alive - and their blood...eeewwww!!) than you can shake a 'tic at :-) I have a pituatary tumour but that's about it...

Can you tell me more - when did you know she had pandas/lyme? what treatment protocol did you use? what do you mean by 'not treating the lyme'? I am very anxious to hear from you! Thanks, karen

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

My ds had a high CamKinase test (194) and then took a lyme test through IGenex. He had a positive IgG result with band 41, 34 and INDETERMINATE with bands 34 and 39. Could strep create the positives in this test? Thanks!

Our ds tested positive on IGenex band 41 (3+ symbols), and on band 31 (1 + symbol) and INDETERMINATE on bands 34 and 39. I would greatly appreciate any help.

We only had the 4090 test done - It costs around $260. I am hoping that will give us a good idea of infection or not..Results should be in on Oct 2, 2010.

From what Dr. C had emailed us, the test can also show bacterial or viral issues including lyme. Our ds score was 194. When speaking to Dr. Geller (1 of the Saving Sammy drs) via phone the other day, he said that we could work for years trying to find the culprit or do ivig and try to work with it now. That is what we are currently trying to do.

My son who weighs 43 lbs and is 8 was started on 250mg of augmentin 3x daily. He was on zithromax prior (started August). Does anyone have any research on dosages for children with pandas? our son was symptomatic in May 2010 but we have seen quite a reduction in tics since being on the abx. However, I would like to see more awareness and less emotional liability. Any suggestions or comments are welcomed. Thanks. Pam -- Is this dose intended as a response to 1) a current infection, 2) an ongoing PANDAS treatment or 3) prophylactic? I think if you look up 875 mg. Augmentin, 2x daily, you'll find it is probably adequate for treating certain infections, including strep. There's a lot of anecdotal information out there, though, that suggests that perhaps either the XR (time-related) formulation of Augmentin or Zithromax are more effective at treating PANDAS. It could be because regular Augmentin's half-life is quite short, whereas Zith's half-life is very long (something like 73 hours, if I recall correctly), and the time-released formulation of Augmentin (XR) would theoretically leave the drug active in the body longer than the regular form, also. On the other hand, I understand that some find the regular Augmentin to be more effective against PANDAS, perhaps because it actually has a higher clavulanic acid component than the XR version. Lots of bodies of thought, unfortunately, and none of them necessarily applicable in every case; all our kids seems to respond differently to medications. You might search here on the forum for "XR" or "zith" or "clavulanic acid" or similar terms to get a broader perspective on the topic. Good luck!

I would like to hear from other parents of their experiences with all types of PANDAS treatments. Going into this, I believe I was very naive to think that either abx or ivig would be our sole answer...I would like to become more educated on treatments and side-effects of each.

What were your child's symptoms? Did they have the impulsivity, aggression, etc. and did the IVIG take the symptoms away?

Would this be helped by ivig? Does anyone know if using ivig would take away the need for ssris? or am I dreaming that there may be a day when my child doesn't need meds?

We have tried 5htp and tryptophan. Neither did a lot for his mean aggresive behavior. He has goods and bads on ssris but the goods do outweigh the bad. He used plot against kids in his class without them...

Our son has just been diagnosed and I have wondering this question as well. He is on zithro. but I believe he has had this too long for it to be helped by abx alone.

Thanks for the message. I agree that cipralex (lexapro in the US) is not the best choice for our son. He has an increase in tics and I think it makes him a little irrational at times. We have tried prozac and the made him mean. We may have to try another like paxil and see how that works. I hate all these drugs! He goes to see the immunologist on Oct 7th and I am hoping he will give him ivig at that time. We are doing blood work with dr. bouboulis as well. Be VERY careful with the Lexapro. Lexapro was the first SSRI dd was put on (eventually switched to prozac). While lexapro seemed to help the OCD, we also got aggression/akathesia/serotonin problems on it. I'm trying to remember the dose she was on, (she was also about 44 pounds at the time--more than 2.5 years ago). It might have been 5mg/day, then eventually upped (to see if it would help more with the OCD) to 10mg (which was a mistake). I think your Azith. dose is good.

Has anyone suggested ivig therapy for your son?

Can anyone tell me why IGenex is the most recommended lab? Is there something that they are doing that all the other labs don't know about when it comes to Lyme detection? What makes their Lyme testing more accurate than all the rest?

I believe my son was under age 1 when he started having symptoms. What does the scientific research say about age of onset (can it come from birth)? Also, our son had colic, urine infections and was septic before a year. Could the infection had come from nasal/ear infections?

My son is 8 years old, weighs 44 lbs and has a CamKinase score of 194. He is currently taking 250mg of azithromycin every other day. He is also taking 2-3mg of lexapro to help with anger, aggression and ocds. Any responses on meds, dosing and changes in behavior would be helpful. We are due to see an imunologist in Oct. and are doing a phone consult with dr. Bouboulis after my son's blood work is done in Sept. He is also doing the IGenex lyme test at the same time. Thanks!