IVIG update (1 week)

[philamom]

y

Edited April 29, 2012 by philamom

[jjl]

I am brand new to this also, but I have read several posts between the PANDAS and Lyme panels about kids getting worse after IVIG. It really makes me wonder how long one should be treated with abx BEFORE trying an IVIG OR whether it is ok to get IVIG during lyme treatments to boost the immune system. I would love to hear thoughts on this from the more experienced parents. John L

[KeithandElizabeth]

double post

Edited November 11, 2010 by KeithandElizabeth

[KeithandElizabeth]

Melinda:

 

I am so sorry......

 

We have quit doing the IVIG's and have no regrets. My son (who had the 6 IVIG's) is now doing wonderfully with lyme treatment and the IVIG's just created too much of a severe herx. I don't even think they helped him fight the bacterias because after all of those IVIG's, he still had strep, mycoplasma, bartonella, lyme and babesia. He has successfully fought most of the bacteria's now with his own body and is down to just the babesia. Right now, we do not plan to ever do an IVIG again.

 

I do think that this is a strong herx you are seeing and the further to go from the IVIG, the better your daughter should get. Maybe add some more of the detox therapies right now? When my son was at his worst, during the monthly IVIG's, bentonite clay and charcoal would bring some relief.

 

Elizabeth

[sf_mom]

Melinda,

 

I have also read a lot about histamines being off the charts in children with Lyme. You might try benadryl once per day and one hour before bed. When/if you start, it takes two weeks to make an impact and calm things down. You might considering giving it a try.

 

As you know others have had similar experience to Elizabeth. I would wait to add the antibiotic until she re-achieves her baseline of Halloween.... Expect it to take a while and hope a few others will report their experiences to give you perspective on timeframe.

 

-Wendy

Edited November 11, 2010 by SF Mom

[Suzan]

Our LLMD is going to work with our neurologist to discuss IVIG's for dd9 and believes that IVIG may be in her future sometime since she had good improvement with the emotional aspect of PANDAS (or lyme) with IVIG. But we won't be doing that for a while after she gets through the lyme treatment. I think, if I understood correctly, we might to IVIG after the lyme treatment is over if there are lingering symptoms. I may be reading into what the LLMD said since we did not discuss it at length.

 

Susan

[PacificMama]

Hi Melinda,

 

Sorry to hear about the backslide. I have no experience with IVIG... we never did that with my oldest daughter during lyme treatment (and she is now A-OK, symptom free). I'm curious if you did the IVIG as you already had a plan in place to do it before you started on lyme treatment? I do know it is sometimes used for lyme and co, but I think it's more of an "end of the line" type of thing. When abx treatments have exhausted and pathogens are eradicated.

 

But I did want to say hang in there. You did at least get to see a glimpse of your daughter and her improvement with the lyme/co protocol. You will see that again once things settle down. I think you are wise to hold off on adding the new abx until things settle.

 

Also, you posted elsewhere about your daughter's improvements in gut symptoms from the lyme treatment. Can you post about that when you get a chance? We have yet to start my youngest daughter's treatment as we are waiting on our appointment (she was the one just diagnosed). Gut problems have always been her prominent symptom -- chronic pain, acid reflux, bowel issues). I know this is very common with these infections for them to harbor in the gut, and so I hope she will see some immediate relief once we get her on the right abx.

 

Be well.

Mary

Edited November 11, 2010 by PacificMama

[sf_mom]

Mary,

 

Just wanted to add.... we also saw immediate relief from gut issues when starting Lyme protocol. Our son was having blood in his stool, it turns out he had a parasite that he was unable to resolve on his own most likely due to the Lyme. The red/brown stool's cleared up in 48 hours of starting Alinia. How Dr. H attacked the gut issue for us was with the following: Ketotifen a histamine reducer to lower inflammation and repair mucal lining, Alinia to address parasite/lyme, Xymogen IgG 2000 DF for absorption/repair, probiotics for good bacteria. Once on this program for a while... he will later address yeast if its still an issue. He writes about it in Insight to Lyme.

Edited November 11, 2010 by SF Mom

[LNN]

.. the IVIG's just created too much of a severe herx. I don't even think they helped him fight the bacterias because after all of those IVIG's, he still had strep, mycoplasma, bartonella, lyme and babesia. He has successfully fought most of the bacteria's now with his own body and is down to just the babesia. Right now, we do not plan to ever do an IVIG again.

 

I do think that this is a strong herx you are seeing and the further to go from the IVIG, the better your daughter should get. Maybe add some more of the detox therapies right now? When my son was at his worst, during the monthly IVIG's, bentonite clay and charcoal would bring some relief.

 

Elizabeth

 

I have a similar sentiment. We only did one IVIG, thinking we were treating Pandas (now looks like Pandas+lyme). The reaction for the following 8 weeks was horrible for everyone in the family and I can't imagine doing another, particularly since at the end of 8 weeks, my son was no better off. I'm not knocking IVIG - I think it's helped many kids. Just not mine. I don't think it's a great idea when lyme is in the picture.

 

Motrin - and lots of it - gave us some relief. Agree with Wendy's suggestion for benadryl as well.

 

I understand losing your patience after you've seen that it's possible for your child to behave. Try to remember that she would love nothing more than to be that way again. It takes a team effort to get through this. Try your best to pull together as a family. I try to remind myself that I am teaching my son by my own actions. Sometimes I totally fail. But remind yourself that this is temporary and you know you have a great kid who will re-emerge.

[lyme_mom]

I would not rule out starting another antibiotic if your llmd wants u to do it. This often isnecessary when the current protocol is nonlonger working. Lyme is smart so they switch it up a lot and your llmd may suspect a coinfection based on these symptoms. The ivig could have helped with the Lyme and now bartonella symptoms are coming out. It's hard to know.. What antibiotic does he or she want you to start? It could actually help with symptoms. It doesn't always mean bad herxing. Rather than not taking llmds advice maybe you could get a second opinion. I usually went with the llmds advice although on occasion I got different advice from our two llmds and I had to make a decision. We switched medications many times even when we were not doing well. Just a thought. Is she taking rifampin?

Edited November 11, 2010 by lyme mom

[philamom]

I would not rule out starting another antibiotic if your llmd wants u to do it. This often isnecessary when the current protocol is nonlonger working. Lyme is smart so they switch it up a lot and your llmd may suspect a coinfection based on these symptoms. The ivig could have helped with the Lyme and now bartonella symptoms are coming out. It's hard to know.. What antibiotic does he or she want you to start? It could actually help with symptoms. It doesn't always mean bad herxing. Rather than not taking llmds advice maybe you could get a second opinion. I usually went with the llmds advice although on occasion I got different advice from our two llmds and I had to make a decision. We switched medications many times even when we were not doing well. Just a thought. Is she taking rifampin?

y

Edited April 29, 2012 by philamom

[philamom]

y

Edited April 29, 2012 by philamom

[sf_mom]

You could give bentonite/activated charcoal at bedtime with probiotics.

 

I think trying the benadryl over the weekend is a great idea. The amount doesn't cause any of my children to oversleep (we give it to the twins nightly and our older son takes the Ketotifen). Apparently, you can even get a histamine reaction in the brain..... the one time a day dosage/usage is to bring down the over active immune response and not necessarily make them sleep (although it helps). If you think it helps I would do it nightly until she is at her baseline again.

 

-Wendy

[philamom]

You could give bentonite/activated charcoal at bedtime with probiotics.

 

I think trying the benadryl over the weekend is a great idea. The amount doesn't cause any of my children to oversleep (we give it to the twins nightly and our older son takes the Ketotifen). Apparently, you can even get a histamine reaction in the brain..... the one time a day dosage/usage is to bring down the over active immune response and not necessarily make them sleep (although it helps). If you think it helps I would do it nightly until she is at her baseline again.

 

-Wendy

y

Edited April 29, 2012 by philamom

[PacificMama]

I may try the benadryl. Sometimes it seems she has a paradoxical (sp?) response to it and becomes even more hyper/aggitated. Do you think that could be herxing?

 

Yes, my kids always have the opposite intended reaction to these types of drugs. I've always been told by doctors this is not uncommon with some kids (and adults).