Jump to content
ACN Latitudes Forums

3rd IVIG behind us and further Lyme testing...


Recommended Posts

I was in your shoes about a year ago so here are my thoughts...if you suspect lyme or another chronic infection is holding your childs recovery back then stop doing the high dose ivigs and retest. I do not know if 8 weeks is really even enough time to wait before re-testing, especially if your child has received multiple infusions. The high dose infusions are meant to supress the immune response. The lyme western blot is looking for antibodies and if the immune system is repeatedly hit with ivig, then your testing could likely become even more negative than it was the first time. We had to learn the hard way because we assumed based on cam k score and immune markers that our daughter had "classic" pandas. She received monthly infusions prior to lyme testing. She did seem to improve with ivig and steroids but the improvements did not sustain and after a year of pandas treatment we found lyme, mycoplasma, and bartonella. So after an entire year of full strength zyth and multiple ivig's she was still battling some serious infections. It did not make sense to me to continuously try to quell a fired up immune system without erradicated the underlying infections. I know many people are having some success with infusions so I do not mean to spark a huge debate but if your child is still struggling or not maintaining progress then maybe re-think the infusions. If it were me I would see an llmd and start a higher dose antibiotic regimine to "bring out" the lyme...wait a few months and then maybe retest if you are still unsure about lyme. If cost is an issue, which for most of us it is, then definately get a copy of those results and take them to an llmd. There may be even enough to go on without retesting to start a trial of lyme treatment.

Since beginning our lyme journey just over a year ago my daughter has made huge progress. It was certainly not easy in the beginning as the herxing was very hard at times. I felt like we were starting all over and it was hard but I believe now she has a chance at true recovery. Hope this helps with your decisions.

Kim

Edited by momofgirls
Link to comment
Share on other sites

Hi My daugter had an ID (indeterminate from igenex lab). Tests performed 6 months ago showed negative (different lab). I read somewhere that on one of these forums that Ignex gives frequent false positives. Also when I had my daughters blood work done at quest they inquired why the doc had requested ignex lab when they do the same. We were advised to do labs again in 6 months but I seriously doubt she has lyme. I still myself struggle with pandas vs. tourttes but trying to stay in the grey area. open to others responses.

We just got home form Dr. B's infusion center and did tell Dr. B that Ian has made no progress since the 2nd one, and is indeed worse. A small virus could be part of the increased tics and OCD this past week, but he still felt that Ian should be doing much better. He brought out the Igenex labs again and said that the Lyme Western Blot IgM and IgG were Indertminate, which I guess means there was something, but not enough to register a positive. The test was done in February so he wonders if it was very early. I find it odd Ian would have been bitten by a tick in January or Feb since we live near Boston and we were under 3 feet of snow. I thought I would past here though and ask what this might mean? I will start some reading on the Lyme board. But figured many PANDAS parents here are familiar with the IGENEX testing and may have some insight. He wants us to retest now (which kills me since we will now have a $300 fee at the infusion center every visit as well, costs going up and up). So I guess I will wait and see what the new test results says. But are the old results of any significance?

 

 

 

And if so, I guess I need a good Lyme doctor that will work along with a PANDAS doc, and need them near Boston or Metrowest Boston.

 

Oh, and Ian is on Augmentin, treatment dose anyway, will this mess with the test results?

 

Thanks!

 

Lisa

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...