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IVIG # 2 do more harm than good?


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This forum has been of tremendous benefit in terms of information, varying perspectives, reflections and perceptions of various doctors and their protocols, etc. I wouldn't trade it for the world. But given as this is a developing field of endeavor for everyone involved . . . including the experts . . . aren't we all best served to apply our own particular brands of skepticism and questioning, admittedly to differing degrees, as we seek the most efficable treatment for our kids? And doesn't that inquisitive, intelligent approach to finding what's best for our kids include some open and honest discourse about new directions, findings, "paradigm shifts" and the like? Can't we do that without taking up . . . or being assigned . . . positions at one end of the pole or the other: snarling guard dog and startled bunny? :unsure:

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This may sound absolutely ridiculous and ignorant, but I'm going to throw it out there and you can throw jello at me...

 

I've had similar thoughts about the Lyme talk. Respectful consideration, but can all these kids have Lyme..... and in families with multiple siblings??

 

So, the forensics in my head goes something like this... if you can possibly contract Lyme mother to child, between intimate partners, among siblings... well if that all turns out to be accurate, maybe most or all of us "have or have had" Lyme, but like strep and myco-p, it causes atypical symptoms and major problems in some and others just process and perhaps eliminate it whereby it does not cause such problems.

 

Also, I realize some answers have been given by the laboratories, but IVIG messes with lab results, right? Just going off my uninformed, ignorant (disclaimer) experience, my dd10's myco-p level doubled from 1.6 right before IVIG to just over 3 (the one that measures the "first" exposure and isn't suppose to 'go up') ten weeks post IVIG with no illness or increase in symptoms. What if we're all carrying around some levels of Lyme measurement and the IVIG piles up to make it then detectable?

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However, we live the least lyme infested state in the United States and my son did not have one physical lyme symptom because he presented with all OCD/TIC symptoms.

 

Me being curious....

 

Can I ask where you live?

 

Also, is there any possibility the exposure could have taken place during a vacation or previous residence?

 

Is there a history of pets or people in the household having ticks?

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This may sound absolutely ridiculous and ignorant, but I'm going to throw it out there and you can throw jello at me...

 

I've had similar thoughts about the Lyme talk. Respectful consideration, but can all these kids have Lyme..... and in families with multiple siblings??

 

So, the forensics in my head goes something like this... if you can possibly contract Lyme mother to child, between intimate partners, among siblings... well if that all turns out to be accurate, maybe most or all of us "have or have had" Lyme, but like strep and myco-p, it causes atypical symptoms and major problems in some and others just process and perhaps eliminate it whereby it does not cause such problems.

 

Also, I realize some answers have been given by the laboratories, but IVIG messes with lab results, right? Just going off my uninformed, ignorant (disclaimer) experience, my dd10's myco-p level doubled from 1.6 right before IVIG to just over 3 (the one that measures the "first" exposure and isn't suppose to 'go up') ten weeks post IVIG with no illness or increase in symptoms. What if we're all carrying around some levels of Lyme measurement and the IVIG piles up to make it then detectable?

No jello throwing here. I've had a similar question.

 

Could my son have picked up Lyme "markers" (IgG antibodies to lyme) from IVIG. Are we just measuring the presence of antibodies not created by his own body? I don't know enough about it to know the answer. IgM is a relatively short-lived antibody and the IVIG is stored and tested for months before it's used. I don't believe (tho I am on shaky ground here) that much IgM survives. And I read that IVIG is mostly IgG. My son's recent results have positives and Indeterminates on both IgG and IgM bands. So in my novice mind, that sort of squashes that concern.

 

The second thing I keep coming back to is that my son's C3d levels are still high. IVIG should have lowered them, even if there were someone else's left-over IgG antibodies to Lyme or whatever. The complexes are forming in response to an active infection - of something. Could it be Lyme? Maybe. Could doing a lyme test - even 9 weeks post-ivig - skew the results? I don't know. But I know something is still in our way. And I'm not talking about not wanting to believe my son is a brat or not wanting to believe there's some residual stuff from PANDAS. I'm talking about his cognitive skills and the significant decline since May (did IVIG in June). He went into an episode 2 weeks prior to IVIG and I couldn't figure out why - no known strep exposure this time. But something has changed. Skills were there and aren't now. Pain went away for 4 weeks post-ivig and now is back. Something is still there. Like a bad Freddie Kreugger sequel.

 

So I'm glad for the information that's sneaking its way into the forum. I'm glad for the exchange of ideas. I know I certainly don't have all the answers - not even close. I've spent 2 years learning everything I could about PANDAS. I know so little about Lyme and other possible diseases. So I'm happily soaking up the info and personal stories people are willing to put out there for consideration. I pick up clues and see if any apply to our situation. Some leads fizzle. Some pan out.

 

However, I do wish we could have discussions that don't polarize, that don't make people reluctant to post for fear of getting into the muck. The dozens of people lurking and reading might have answers I need. But I won't get those answers if this becomes a cat fight. Debate is one thing. But there are cheap shots and personal attacks (on both "sides")that just don't belong here. I love being able to read, explore links and research papers, verify things on my own, hear honest but respectful opinions on personal experiences with doctors, and see if it applies to my situation.

 

Please, for those of you who have strong feelings one way or the other, take the discussion private. This thread started out being about what might be going on with kids who haven't had positive responses to IVIG. Now that I'm unfortunately in that group, I would love to have people roll up their sleeves and help me brainstorm about what might be going on. I can - and have - made my own decisions about which labs, which tests, which doctors. What I need help with is which leads, which ideas, what research, what clues, do I look at next. If anyone wants to help me, would love to hear from you.

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You can throw all you want at me as long as it's slimy LIME jello :P

 

Seriously, a sense of humor helps. We all want well, healthy, happy kiddos.

 

The number of variables involved here is overwhelming. What medicinal therapies have you tried and in what order and for what duration and how old and how long were they symptomatic? You tried abx first? ......which ones, in what order, for what duration and at what dose...... oh, and BTW where you exposed to anything old or new in the meantime??? I'm sure I left out about 341 other questions OYIE!

 

LLM-for what it's worth, cognitive fog has been a MAJOR, long lasting symptom (no joint, achy, muscular/tone issues) for my girl which, thus far, the fog has cleared with the first IVIG, but we are 15-16 weeks post which is infancy in this chess game none of us would ever choose to play..

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LLM - what a great post!!! I completely agree with all of your sentiments. Let's try to share our personal experiences and not judge each other. Each of our situations may be a little different and although we may all be here with similar symptoms, we may have different microbes causing these symptoms.

 

I know that for our family, this forum has been a savior. In my desperation, I have consulted with so many of the doctors mentioned on this forum. And I have learned something valuable from each of these doctors and these doctors are still learning from us!

 

I would consider our son to have been very severe, PANDAS wise, and the high dose IVIG really helped him. Then, he regressed a little, after multiple IVIG's, and little posts from other moms really helped us figure out what was holding him back.

 

There was a time when mycoplasma was a big topic and we did the blood test and it was high. So, I am so happy that I read about Mycoplasma on this forum.

 

When Pacificmama and lymemom began posting, I was simply terrified because I thought "no way is this lyme with all of these mental issues and no physical issues." But I could not not investigate these other issues because our son was not doing well and he was paralyzed with fear and stuck in the house. Hence, our family was stuck in the house. So, I had to keep searching and I couldn't not jump into the latest "fads" because we had no alternative.

 

So, yes, we can choose not to follow some of the blood work that certain families are doing, but for those of us who really need help, these additional tests give us alternative avenues of healing our children.

 

My son is now doing so well and he is having playdates and sleeping and finally going back to school... Thanks to this forum!

 

Elizabeth

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