ivig for lyme...who's doing it?

[norcalmom]

Had second LLMD appointment today. One test suggests lyme...so probably is something there. My question for him was - how do we decide what to treat. Both lyme and pandas seem like dx based upon exclusion of other things. Same symptoms (actually my son sysmtoms look like Swedo list of symptoms..he has 90% of them)

 

I LOVED the effect of ivig.

 

The LLMD said if we could do ivig - we should do it. Weather for pandas or lyme, it would be helping his system fight the lyme and correct whatever autoimmune issues are going on that are keeping him symptomatic. I think he is beginning to slide backwards right now. But he is getting over for very bad virus, so not sure if it was a blip -or if his baseline is creeping up.

 

We're also going to switch antibiotics to dorxy. Anyone else using this with their kids? I'm a little concerned about sun sensitivity - he plays baseball and is outside a lot. I know I had sun sensitivity with minocycline that I was on 10 years ago - it a very weird thing, 2 minutes of sun will make you turn bright red and it felt bizarre. He said dorxy isn't usaully used for kids - my son will be 12 in a month, but weighs 115, so he said OK to it. DS has been on azith for over a year.

 

We're switching to dorxy becasue that is probably best for mycoplasma, and Azith probably not doing much anymore. And we are fairly certain DS has mycoP issues based upon igg titers that are very high.

 

Anyone else doing ivig with lyme protocol? I think I'm gong to see if we can get one soon. Should we wait 6 weeks for doxy to have a chance, or maybe we should to it in two weeks and start the doxy the ivig ? Any thoughts?

[NancyD]

Norcalmom,

 

We did HD IVIg within two months of beginning Lyme treatment. One infusion in Nov at 1.5 g/kg and another infusion less than two weeks ago at 2 g/kg. I wanted to wait a few months more but after a year of appealing our insurance company they finally agreed. They gave us a 3-month window, which I could not pass on. It's too soon to say if it will help the last two remaining symptoms -- anxiety and scrupulosity. But I can tell you the healing process from IVIg is so much easier now than it ever was before!

 

I am on doxy but DD is not. She's on Augmentin XR, Azyth, and Tindamax.

 

Nancy

[sf_mom]

Norcal Mom: What Dr. is making the hdIVIG recommendation? AND, is your son on a combo's antibiotic treatment.... as I never known Dr. G/Dr. H prescribe less than two antibiotics at a time?

 

-Wendy

Edited February 8, 2011 by SF Mom

[jayjay]

My son is doing both IVIG and Lyme treatment. He started Lyme treatment one week after HD IVIG in October. Had another HD IVIG in December and will be having a third HD IVIG tomorrow and Thursday. His immunologist and LLMD both agree that the IVIG is complementary to the Lyme treatment. For the Lyme, he takes minocycline and zith. Not going to lie. It has been a very bumpy road. I can say that he is far from where he was a year ago. Is it the Lyme treatment? Is it the IVIG? The combo? I'm not sure. As long as the overall trend is in the right direction and insurance will pay, I feel I have to listen to the experts and do both.

 

The decision to do both was not an easy one. Our pediatrician dropped us for sticking with the Lyme treatment. But as I sat down with my son the other day and he read a page out of his book to me, something he has not been able to do fo a very long time, I smiled to myself and knew I had made the right decision. I'm looking forward to the day when I can walk back in her office and say "I told you so"

[NancyD]

Our pediatrician dropped us for sticking with the Lyme treatment."

 

You must be kidding...he dropped YOU for sticking with Lyme treatment??? That is not a pediatrician I would want to be with!! Certainly doesn't have your child's best interest at heart. Best to be rid of him!

[jayjay]

Our pediatrician dropped us for sticking with the Lyme treatment."

 

You must be kidding...he dropped YOU for sticking with Lyme treatment??? That is not a pediatrician I would want to be with!! Certainly doesn't have your child's best interest at heart. Best to be rid of him!

 

It is pretty unbelievable. I'm just filing her with the Dr. who sent us to parenting classes for my 5th kid, the two weeks he spent in the psych ward, and the time and energy we spent appealing our insurance company for IVIG(at least we won that one!)