IVIG- when to consider?

[nitshel]

Our DS has Lyme (Advanced Labs 2013). After abx and now on Buhner we are considering IVIG. My question- does one do IVIG only when some IG levels are low - or can we consider IVIG to reboot the immune system even if the IG levels are within range? We know his immune system is likely wonky due to alone- constant allergies, ever present inflammation- but surprisingly the IG levels seem to be in range...thoughts ?

[emst]

Interesting. If expense is not a concern a trial might tell you a few things even if his IG is in normal range..

Have you tried Helminths? Biome restoration might be a good supportive.

And /or Enduracell Bioactive has been a big win for our kids at 2 per day. They both have old lyme, pandas in remission, ds also has autism, his

sister does not.

[jan251]

I don't know the answer to this question and I will be listening in. I'll throw in my two cents anyway. My understanding - I'm not sure where this comes from - is that IVIg might not be the way to go if there's a current infection (lyme), either for the reason that the new Ig might kill off too much at once or for the reason that the new Ig will turn off some immune function, a bit like a steroid. Then there's the question of lyme depressing the immune system, but that's a chicken-vs-egg question in my mind - which came first, the depressed immune system that couldn't handle the lyme or the lyme that depressed the immune system, or is it a vicious cycle?

 

My overall sense is that IVIg is a bandaid and ultimately can't permanently fix the immune system if the cause lies elsewhere, with a messed-up gut. On the other hand, there are days when I'd gladly take the bandaid if it would help even temporarily. Whether to include it as part of the overall package of treatments is, of course, a case-by-case decision. It is not without risk and obviously there is great expense.

 

I really like a lot of Buhner's ideas - I'm using a lot of his suggestions - and I'm starting to look at Cowden a bit as well though I don't know much about his program yet. Buhner seems to have some solid ideas on inflammation and infection specifically for lyme and co-infections, but where I think Buhner's plans fall short of being enough for PANS kids is not addressing immune/gut function. That's the million dollar question - how do we fix the immune system? Some people treat that by a combination of gut supplements (e.g. l-glutamine for tighter junctions, probiotics and such for the microbiome) and temporarily avoiding triggering foods. (And if I go way, way out there, I wonder about immune function that arises from bone marrow...)

 

I also worry about (non-lyme-related) parasites. Thinking out loud, I have no idea what becomes of a parasite situation when a patient is treated with IVIg.

 

Adding: I say this from the perspective of having a child with a history of immune and nervous system issues, but nonetheless had that "on" switch for OCD switched on at a point in time. Where's the off switch? Is there an off switch if there are antibodies to, say, glcnac or is there an element of permanence? Could IVIg be the off switch? Do we even want an off-switch (such as IL-10?) if there's current infection? (He has had strep, mycoplasma, lyme, babesia, bart)

Edited September 11, 2015 by jan251

[nitshel]

Our LLMD wants us to try Immutol - she says many of her patients have had good results with it. We also need to find several ways of tamping down inflammation- we just began trying Enhansa and Nordic fish oil. This summer has been crazy with ragweed allergies bringing out the tics in DS

[nitshel]

@emst- we thought about Helminths but didn't decide on it one way or another - still trying to get over the "ick" factor 😀

Have others tried it?

[sf_mom]

I have two children who have Lyme et al and receive low dose IVIG every 3 weeks for immune deficiencies. The IVIG has helped their bodies fight their known infections and brings the bugs out of hiding. Unfortunately, we've had to up their antibiotics to cover for all known infections. For example: DD is on Alinia, Sulphmeth, Azithro and Mepron daily. Its a lot but she is doing the best she ever has... DD is 64 pounds and receives 10 grams.

 

You mention two things: Inflammation and constant allergies (I am assuming he has congestion). Those combined could easily be mold exposure and macrons. Have you checked for those issues. You can swab his nose to check for infection. Real Time Labs and Shoemaker Panel for mold. Often individuals with mold exposure do not make headway with antibiotics protocols.

 

Bartonella will also cause global inflammation as there is vascular inflammation and will also raise C4As. Rowingmom posted a great video on it the other day that explains the process.

 

[nitshel]

Yes we did check the house for mold - even had all the air ducts cleaned. The house isn't very old and the school building seems pretty good too. This is actually the first time DS has had an allergy in the summer - usually it's the Spring.

Sf_mom - I assume insurance is covering the regular IVIG infusions? We are trying to find a PANDA doc to give us a way to cover the cost - not quite sure how we will pull it off. DS blood tests show his CD57 is way low ( haven't tested for C4a) - so that's another data point in my mind that points to a wonky immune system...

[mommybee]

IVIG is not without risks. It uses pooled blood from lots of people and the screening of the blood isn't 100%. Susan Swedo is afraid of it and only recommends it for PANDAS/PANS patients as a last resort. She says good doctors draw the line in different places, but she is only comfortable with its use when a child's life is in danger. In the context of PANDAS/PANS this means when eating becomes so restricted that it presents serious health concerns or when a child becomes either intentionally suicidal or so reckless and impulsive (jumping out of moving cars etc.) that his or her life is in danger. I was at a conference where she explained why. Early in her training she had a child who contracted meningitis from a transfusion. This warning in conjunction the lack of evidence based research to support the use of IVIG as an effective treatment for an active Lyme infection would be enough to prevent me from using it.

Well targeted pulsed antibiotic treatment in addition to diet and supplements is supposed to be the most effective treatment of Lyme disease and confections.

[nitshel]

Thanks mommybee- certainly food for thought. We have tried all of the options you outlined- pulsed abx, supplements, anti inflammatory, diet control and after 3 years we've hit a wall - plus recurring flares that come suddenly and disrupt DS school and social well being. We also see indications of immune issues - allergies, low lymphocytes count. Hard to tell if the Lyme caused the immune system to derail or if the immune system was weak to begin with and Lyme got a foothold...

From what I've seen on this forum (anecdotal evidence) the consensus seems to be that most folks seem to find IVIG worth the risk. I know that PEX does not involve foreign blood but it is far more invasive and expensive.

Appreciate everyone weighing in - this is not a trivial decision by any means - and a thoughtful, informed decision is super valuable

[jan251]

FWIW, I have read about the cd57 being low as associated with lyme. I would be guessing there are lyme and co-infections still present. If you haven't gone down the route of the co-infections, I would look at that first. How far did you get with the Buhner suggestions? Did you treat for babesia and bartonella?

 

If you do decide to try the Immutol, please give us a review of your experience! Unfortunately, baker's yeast is on the list of foods that my ds showed a reaction to on the IgG food panel, so it's not something I'd consider right now for him, but the general idea would involve polysaccharides to presumably heal the gut. If there's more info behind the general idea, I'd be very interested to hear it. Beta-glucans isn't the only source of polysaccharides so it would be especially interesting to know whether it is somehow superior to the many other forms (various mushrooms, seaweeds, etc.)

[nitshel]

We have looked at co-infections and the abx protocols (and Buhner) have been with those in mind but it seems like we've hit some kind of wall. Perhaps the infection is hiding in places the meds/herbs cannot get to. To be fair the Buhner protocol takes a year or more to complete and we've only been on the journey for a few months. But the latest flare makes it seem like the underlying problem hasn't budged.

 

I'm torn about PEX- it does not involve any foreign fluids being introduced into the body but I think to myself, if one removed all antibodies of all kinds from the blood (which is what I believe PEX does), won't we be making the patient vulnerable to disease? And what's to stop the misguided immune system from creating new misguided antibodies? So from that perspective is PEX just a poor bandaid for a problem whose root cause lies in an awry immune system and/or a chronic infection?

[jan251]

Nitshel, we are in a very similar place. One thing I have been wondering is whether we ought to be considering something bigger (literally) like other types of parasites. I feel like we haven't found our big gun yet. We may nonetheless need to deal with these infections, but if that's all there was to it, surely we'd have seen a bit more improvement (with antibiotics and/or herbal protocols). We only see very tiny improvements at the margin that vanish on a bad day. Intuitively, it is hard to accept that we ought to simply stick it out for two years on a lengthy protocol with close to no short-term improvements at all.

[mommybee]

Nitshel, is your child under the care of an ILADS trained LLMD? If not, I would think this would be the next step. I've read and heard anecdotally that IV antibioitc treatment is often quite effective. Have you discussed installing a picc line with your doctor?

Edited September 18, 2015 by mommybee

[pr40]

just a rection to something posted above -- that Sweedo recommends IVIG only when child's life is in danger.

I am pretty sure that this is incorrect. There was a whole NIH study of which Sweedo was a part that qualifed kids for IVIG not by that criterium but by more usual OCD etc. criterium

 

Moreover, you should read about IVIG -- it is a common procedure! Like all blood transfusions, it is not 100% safe but no medecine ever is 100% safe.

[sf_mom]

Couple of things:

 

Mold issue can be internal issue: yeast/mold/fungus are all the same beast. I always feel the individual should be checked first. Mold comes from all sorts of environments even foods, etc. Real Time Labs looks at the urine and types of mold by product being dumbed into it. We had normal C4As but our DD had the highest mold levels our LLMD had ever seen. Shoemaker panel is a combination of tests that insurance should cover and Real Time Labs can be submitted to insurance but was not covered for us. The first time we did Real Time it was expensive but to retest is inexpensive so you can track improvement or detox. HLA marker are also helpful and think its included in Shoemaker.

 

http://www.survivingmold.com/diagnosis/lab-tests

 

When MSH is low there is typically MACRONS in nasal cavity causing congestion..... looks like chronic allergies and why I recommend swabbing his nose.

 

My personal belief on PEX is it filters out the biofilms in the blood and why there is often relief. You can also test biofilm via Fry Labs (we tested and had a big problem with biofilms... have since retest and problem is resolved). PEX can be very helpful to those with chronic Lyme.

 

http://onlinelibrary.wiley.com/doi/10.1002/jca.21430/abstract;jsessionid=C8E576F4D05ED9E68220F724A13CC13E.f03t03

 

http://frylabs.com/services-list/biofilm/

 

Yes, our insurance covers IVIG. All 3 of our children have immune deficiencies but only 2 receive IVIG. The other child is well recovered and we are pulsing antibiotics and trying to raise IgGs with IgG 2000 by Xymogen. It is slow going but things are improving.

Edited September 20, 2015 by sf_mom