Question re: underlying infections

[Hayley]

I have read a lot of posts on here about people who find that their kids have underlying chronic infections (lyme, mycoplasma, bartonella, etc.) later in the game -- either after treating for awhile or even after IVIG. I'm wondering: are these infections that went undetected in bloodwork run earlier in the game? Were your kids not tested for them early on? Or are they new infections that popped up since treatment started? My daughter has tested negative for those mentioned above as well as the viruses for which we've run labs, but I'm wondering if I should still be concerned. My daughter is having IVIG next week and I'm both optimistic and petrified, thinking through all the "what if's." I know people have said that underlying infections can be a major factor in the level of impact so I'd love to understand better how these things hide and make sure I'm doing what I can to uncover anything we might be missing. Thanks for advice, wisdom and experiences anyone might share!

[SSS]

My dd had 2 HD-IVIG's, and we had not tested for Lyme and it's co-infections beforehand.

 

Neither PANDAS Dr. we worked with mentioned it, and frankly, Lyme sounded crazy to me.

No history or memory of tick bites, ever, for either one of us, and my dd has lived a rather sheltered life, no camping, never owned a pet, live in the suburbs.

Surprise!

 

FWIW, the 1st IVIG was in retrospect a massive die off/ herx, whatever you want to call it, and the 2nd IVIG, which was about 7-8 weeks later, was magic.

Until it wore off.

 

So, I don't think you'll really know until you try, and kudos to you for all the beforehand infection testing.

[LNN]

We ran a conventional lyme test 3 months prior to IVIG and it was negative. After my son's severe negative reaction to HD IVIG, we waited 3 months and ran an Igenex lyme test, which showed multiple positive or indeterminate bands. Maybe the IVIG made his immune system strong enough to start to fight the lyme and that's what gave us the different test results. I don't know.

 

I completely understand your emotions right now. Unfortunately, no one can say anything to reassure you about how your child will respond, regardless of how our own kids fared. All you can do is give it your best shot. If you do see more negative than positive, then I'd suggest re-testing about 2-3 months after the IVIG. But for now, all you can do is stay positive and have hope.

[Hayley]

Thanks so much for sharing your experiences. I appreciate it!

[kos_mom]

Hayley,

In retrospect, I might have requested strep/myco p tests for DH and me. I'm beginning to think I may be the disease vector around the house--scratchy throat and cough over the last few days. Will ask Dr. L about this tomorrow when we go.

Ko's Mom

[Cleopatra]

I have read a lot of posts on here about people who find that their kids have underlying chronic infections (lyme, mycoplasma, bartonella, etc.) later in the game -- either after treating for awhile or even after IVIG. I'm wondering: are these infections that went undetected in bloodwork run earlier in the game? Were your kids not tested for them early on? Or are they new infections that popped up since treatment started? My daughter has tested negative for those mentioned above as well as the viruses for which we've run labs, but I'm wondering if I should still be concerned. My daughter is having IVIG next week and I'm both optimistic and petrified, thinking through all the "what if's." I know people have said that underlying infections can be a major factor in the level of impact so I'd love to understand better how these things hide and make sure I'm doing what I can to uncover anything we might be missing. Thanks for advice, wisdom and experiences anyone might share!

 

 

My DD was recently dx'd with PANDAS post strep infection (3 months ago) and was just tested at Rothman as HIGH for both Lyme and Mycoplasma as well, so, ours is definitely pre-IVIG txtmnt as we have not had any yet. We are on way (Sunday) to NIMH for the IVIG study. I will keep you posted.

[Kathy4Him]

The Rothman Center is at the University of South Florida All Children's Hospital in St. Petersburg, Florida

 

They are listed on the OCD foundation site as one of the outpatient OCD clinics in the South. Director Eric Storch is over the cognitive behavior programs. Dr. Tanya Murphy, is a leading PANDAS Dr./researcher at the Rothman Center.

[Kathy4Him]

Child & Adult OCD Treatment Program,

University of South Florida

 

Program Director: Eric A. Storch, PhD

 

Contact:

Eric A. Storch, PhD

USF OCD Program

800 6th Street South

4th Floor North, Box 7523

St. Petersburg, FL, 33701

 

Phone: (727) 767-8230

Fax: (727) 767-7786

E-mail: estorch@health.usf.edu

Website: health.usf.edu/medicine/pediatrics/rothman/index.htm

 

Detailed Program Description

 

Program Summary:Intensive Treatment Program ■

Separate tracks for adults, adolescents (13-19) and kids (2-12)

 

■

Length of the program is 3-10 weeks

 

■

Daily, individual, 90 minute sessions

 

■

Total capacity of the program is 75

 

Traditional Individual, Outpatient Therapy ■

Frequency of visits, length of sessions, and length of treatment are all individually tailored to the needs of the client.

 

■

Separate tracks for adults, adolescents (13-19) and kids(2-12)

 

■

Average length of the program is 12-14 sessions (but can go longer)

 

■

Once to twice a week individual, 90 minute sessions

 

■

Total capacity of the program is uncapped

 

Insurance companies we accept payment from: BCBS, United Health Care/United Behavioral Health, Champus/Tricare Standard, Aetna, Humana, Commercial Insurances, and Medicare (among possible others.) We offer a discount for self-paying.

[kimballot]

First off - I don't want to discourage you from IVIG or from looking for lyme. I believe both are important, but I also want to tell you that, unfortunately, you cannot always have exact answers - even if you are very diligent in searching for them.

 

We looked for lyme using igenex before my son had his first IVIG. Igenex had a couple of indeterminate bands - nothing clear - even the Dr. at the igenex lab said it was probably negative. Did IVIG and had major exacerbation of PANDAS symptoms. Did more lyme testing. Every test there is. PCR testing, igenex, labcorp, quest - even Urine testing. Everything available in 2011. Nothing positive. Still just a couple of indeterminate bands. Continued IVIG, antibiotics and supplements. Gradually, PANDAS exacerbation symptoms diminished, but fatigue remained and IVIGs only lasted about 6 weeks. DS was CVID and had chronic sinusitis, and IVIG kept infections away, so we continued.

 

14 months after first IVIG DS developed dark purple stretch marks indicative if bartonella. Started on bactrim in addition a azith. 6 weeks later, marks are fading, though fatigue remains. I don't think this is a new infection. I suspect he has had bart for a while and this has led to his CVID. I suspect bart, coupled with sinus issues and H1N1 led to an exacerbation in 2010 that started us down this PANDAS path.

 

It has been a long haul, but I feel like we are finally on the right path. He continues to get IVIG every 6 weeks. We are hoping that once bart is treated a bit longer he can start to stretch out the time between IVIG infusions.

 

Sometimes, it is really like pealing the layers of an onion with our kids.

[mdmom]

Hijacking this post...

 

Kimballot,

What dose of IVIG is your son getting every 6 weeks? Also, is this dose helping with CVID as well as PANDAS?

[kimballot]

Hijacking this post...

 

Kimballot,

What dose of IVIG is your son getting every 6 weeks? Also, is this dose helping with CVID as well as PANDAS?

 

 

We are now doing 2g per kilo q 6 weeks. Settled on that as trough levels were still very low after 6 weeks with 1. 5g/kilo. Yes - definitely helps with PANDAS. Symptoms start to come back a bit around week 5. We have "turning back of pages" for 1-2 days after IVIG (small tics, talking in his sleep, so I think more vivid dreams). Then 4 good weeks, followed by fatigue, increase in anxiety and OCD... then IVIG... etc.

 

Hoping for longer Quality of lIfe between treatments as Bart is treated.

[mdmom]

Kim,

What were your son's IGG levels before IVIG?

[kimballot]

Kim,

What were your son's IGG levels before IVIG?

 

 

I need to look that up. I will PM you so we don't hijack this post too much. If anyone else is interested - feel free to PM me.

[mdmom]

Kim,

Thanks. Sorry to hijack the post.

[norcalmom]

 

 

My DD was recently dx'd with PANDAS post strep infection (3 months ago) and was just tested at Rothman as HIGH for both Lyme and Mycoplasma as well, so, ours is definitely pre-IVIG txtmnt as we have not had any yet. We are on way (Sunday) to NIMH for the IVIG study. I will keep you posted.

 

I thought the NIMH study strickly eliminated anyone with other infections - STREP only. Do they know that your child tested positive for both Lyme and MycoP?