PANDAS, IVIG scheduled, ...what about 2 bands of Lyme

[Kimflow]

Hi,

Our son recently diagnosed with PANDAS, Syndenham's chorea will be getting IVIG and tonsillectomy all within 3 weeks.

He has positive bands 41 and 66. Our PANDAS doc. not too worried about that.

But I heard at a support group, one father say that he did not want to do IVIG without treating suspected Lyme as it can cause horrible Herx after IVIG.

I have a LLMD appt. this Wed. ...should I keep it adn see hwat he thinks about the two bands?

My son has been on amox, keflex, augmentin, and now on clindamycin, zithromax. Would that be enough to have taken down some Lyme that could be present.

Thanks for any thoughts.

Kim

PS I read another thread on here where they said IVIG addressed autoimmune response to Lyme and they did not mention horrible herxing. What has been your experience?

[LNN]

I would absolutely keep the LLMD appt. I've never seen IVIG discussed as a sole treatment for lyme. If you have lyme, you're going to need abx and/or herbs to kill the bacteria. Some people have found IVIG to support the body and make it stronger, so it can fight lyme better, but alone, it isn't going to do the job. You're going to need an LLMD to guide you on additional treatments 9assuming he/she feels your child has lyme).

 

If you go the the helpful threads at the top of the forum, you'll find several articles that discuss the significance of each band.

 

For my son, IVIG was a bad experience. He had undiagnosed/untreated lyme and had only been on one abx (mostly augmentin). Lyme generally requires more than one abx taken every day. He had what I assume was a horrible herx for 10 weeks afterward. We probably could've done things to help him if we'd had an LLMD on board at the time, but we didn't know better. But the IVIG didn't do much if anything for him in terms of healing. My son had underlying issues (pyroluria) that needed to be fixed and IVIG just wasn't the right treatment for him. I know others have very positive experiences, so I think you really need to know what's going on in the body before you can say whether it could help or not.

 

Have you considered postponing the IVIG until several months after the T&A? My son's T&A brought incredible improvements for several months afterward. If you are paying any portion of the IVIG out-of-pocket, I'd personally consider waiting until you see what can be gained with the T&A and an LLMD-guided abx treatment. If your child has lyme, you're going to need the LLMD and abx for quite some time regardless of whether you do IVIG. So if personal finances are involved, I'd only do the IVIG after giving the T&A and combo abx some time first. JMHO.

[Suzan]

For us, IVIG did cause a herx afterwards (bad limb pain and inability to walk for a day). But it did help very much with her mental/emotional state. However, it did not last more than 3 weeks. I don't regret IVIG but I don't think it helped us long term.

 

Susan

[Orion]

Hi,

 

He has positive bands 41 and 66. Our PANDAS doc. not too worried about that.

<snip>

I have a LLMD appt. this Wed. ...should I keep it adn see hwat he thinks about the two bands?

 

Lyme Western Blot bands 41 and 66 are not specific to Lyme.In fact, Band 66 reacts to hundreds of different bacteria. So by themselves, they can not rule Lyme in or out.

 

In my opinion, keep the LLMD appointment. You need an expert opinion, and they can best inform you what to do, or what to be on the lookout for, and know if further testing is warranted.

[Kimflow]

Yes, thank you for all of your input. I will still drive to see the LLMD this Wednesday. It is a long drive but I had pretty much decided I have to go. The LLMD is also familiar with PANDAS so it will be good to get his input on that too. maybe he will look at our antibiotic history, current regimen from the PANDAS doc. and say we are covering Lyme too.....wishful thinking, I know.

 

I have thought of doing the tonsillectomy first but Dr. L (our PANDAS doc) felt it would be optimal to get the IVIG and then while it is on board, get the tonsillectomy done....I guess within the 21 day half life.

 

Our PANDAS symptoms are not as bad but he is no where near baseline. I swear his breath smells like strep right now....and that is after 10 days of clindamycin. 10 more days of that to go and then on to Rifampin. There is no other antibiotic to try...we have been through them all.

 

Thank you again,

Kim

[LNN]

You certainly have to put faith in your treating physician, and this doctor has a lot of experience. So I understand where you're coming from. While IVIG wasn't a good experience for us, it didn't do lasting damage and we all recovered. So if you go ahead, just remember detox and anti-inflammatories if you start to see negative symptoms.

 

You say you've tried all the abx but have you tried them in combo? Sometimes one won't seem to do much but if you add a second, the cumulative effect is far greater. So keep that in mind and don't despair if you get to rifampin and still don't feel you've gotten rid of things. You can always circle back and try combos. Or abx plus herbs.

 

One final thought - if you've only tested for lyme thru a standard WB, keep other testing options in mind if you're still struggling by the end of the summer. My DS was negative on standard WB but had 5 inderterminate and/or positive bands on Igenex. High immune complexes, C4a and inflammation markers as well as clinical picture supported the dx. I know you can't do this testing right now with so much coming up, but keep it in mind for later as a Plan B.

 

Good luck with everything!