IVIG not lasting because of chronic infections- question

[LaurenK]

I read a lot here about tackling the underlying infections before IVIG can fully work... or that those who have underlying infections relapse when the IVIG wears off. I was wondering if any of this is actually proven? Could it be that IVIG simply didn't last for genetic/other immune issues? I ask because it seems like the many people jump to the chronic infection piece very quickly.

 

There are cases where IVIG doesn't work in other autoimmune diseases but steroids do. When IVIG is ineffective. There's no such discussion on other forums as to " the chronic infection piece." There have been IVIG resistant forms of kawasaki's disease as well or MS, etc. but no discussion on the topic in regards to an ongoing illness.

 

Just curious of people's take on this.

[cobbiemommy]

For us, the answer is that IVig did not bring lasting success after about six weeks. We thought we were dealing only with strep. We were wrong. DS, now 14, tested positive for Lyme (Borrelliosis), Bartonella, and Mycoplasma Pneumonia. Steroids also helped a great deal, but they were also only a temporary fix, and not recommended when dealing with Lyme.

 

This is not a scientific study, but it is scientific proof of infection. Are you looking for a scientific study? At this time, you probably will not find it. Our stories are considered anecdotal. It does not make them untrue, it just means it does not have hard data with statistical analysis.

[mdmom]

We have been tackling infections with DS15 for 26 months now. The last 18 months, he has been on daily IV meds for Lyme, Mycoplasma, Strep, Babesia, Bartonella.

 

The last 6 months, we had hoped that we had infections knocked down enough (but hard to tell b/c he has an immune deficiency) that we thought he was ready for IVIG to do the rest of the clean-up of residual PANS symptoms. And it just so happened that the insurance company finally agreed to pay for IVIG at this time.

 

He has had 6 HD-IVIG since January. He has had no change in his symptoms.

 

So now we must consider other issues holding him back: mold, heavy metals.

 

We are going to leave our home b/c we believe mold is a big issue.

 

But the infections remain and I believe the IVIG will not help until we can better manage the infections.

 

IVIG experiences are different for everyone. But from what I've read from other members on this forum, it has made the most sense to knock down infection loads before pursuing IVIG. What that means for each child is very different because of genetic issues, methylation issues, environmental toxins (in our case mold), heavy metal burdens, age of child, etc.

 

I do not know of any case studies supporting this. Most of us here rely on evidence-based medicine, which is what most LLMDs rely on as well.

[PowPow]

I believe chronic infection is not always the reason. Ivig may help, but if an immune system is malfunctioning, it may not last.

I think this is a great question, laurenk. I hope it can be addressed scientifically soon.

[tpotter]

From our perspective, we had phenomenal results from both PEX and IVIG (PEX was considerably faster, but both helped.) But, my boys were constantly flaring approx. 3 weeks later, and the IVIG simply wasn't holding. That's why we looked at other possibliities, and found other infections (mycoplasma pneumonia, lyme, bartonella, babesia, erlichiosis, very high viral titers, c-diff, and now even a question about h-pylori). We also found other gut issues, such as leaky gut, yeast, heavy metals and also found mold. We have worked very hard on both trying to treat the above, but also really working on the immune system. My boys, although not 100%, have made more progress since starting to treat for these other issues, as well.

 

And, as cobbiemommy mentioned, this is anecdotal information, but honestly, that's why I use this forum. Because we just weren't getting to the bottom of it waiting for pure scientific proof (which could be years or more) before they figure it out. Personally, I don't think it's any one thing, but rather multiple causes, as the immune system gets out of whack.

 

And, as to why the other groups don't talk about it...well, although I can't point to any specific groups, I would suspect that some are talking about it. Kind of like Autism. You mentioned, MS, for instance. There is research showing that doing bone marrow transplant from the onset has cured people. This indicates that "something" is going on (like possibly infection, environmental, etc.) And, I wouldn't at all be surprised if lyme/co-infections, are part of the cause for some MS patients, as well. But, again, it's my opinion at the moment.

 

But, that is certainly an excellent question.

[rowingmom]

I agree with tpotter. If a your current treatment is not producing results further investigation is probably needed.