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IVIG # 2 do more harm than good?


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Sorry, I am always rushing! Last winter, many of us KeithElizabeth, Coco, and others were intitiating monthly ivig, some kids proceeded to have bad symptoms increase with each monthly ivig. This led to some phone consults with Dr. K where he stated monthly ivig especially low dose can "stir up" the antibodies(another infamous Dr. K scientific term) So out of concern many stopped low dose monthly ivig. However some didn't(my dd, Shaesdd, melanies son, peglems dd) Now we have the lymes issue surfacing, and many of the original monthly ivig'ers are now treating for lymes. So what I am thinking is before ivig, everyone should test for lymes.

Exactly, all of the families whom were having trouble with lower dose monthly ivig now either have lymes and I believe one had IGA concerns. So many on here have come to the understanding that monthly ivig is hazardous. One thing for sure from all of this BEFORE u start ivig get the igenex test. But now we all need to rethink the monthly ivig issue. Was it lymes, and coinfections that caused Dr K to say monthly is not working?quote name='KeithandElizabeth' date='06 September 2010 - 01:41 PM' timestamp='1283794914' post='82719'

I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now.

 

Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter.

 

elizabeth

 

Nevergiveup - I was a little confused with your post because the quotes did not work out right. Are you saying that you do NOT think monthly IVIG is automatically dangerous... but it could be a problem if there are underlying lyme or other infections?

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Nevergiveup: I have to chuckle at your statement "I am so confused," because this is how I have constantly felt for the last 7 months. It has felt a little OCDish on my part. I initially thought this was all autoimmune and now I am leaning towards this predominantly being a chronic infection for many of these families, but not all families. I was literally in shock when we saw such amazing healing from the multiple antibiotics. But it was not perfect healing and it was very bumpy.

 

So, I agree that everyone should start with the infection tests. And I would suggest testing only via IGENEX test because many of the families that I speak with had negative Western Blots and than positive IGENEX tests. I would also consider having the mothers test as well because there is a slight chance that if it was passed congenitally, than the child may possibly have a false negative IGENEX test.

 

Elizabeth

Edited by KeithandElizabeth
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Nevergiveup: I have to chuckle at your statement "I am so confused," because this is how I have constantly felt for the last 7 months. It has felt a little OCDish on my part. I initially thought this was all autoimmune and now I am leaning towards this predominantly being a chronic infection for many of these families, but not all families. I was literally in shock when we saw such amazing healing from the multiple antibiotics. But it was not perfect healing and it was very bumpy.

 

So, I agree that everyone should start with the infection tests. And I would only suggest the IGENEX test because many of the families that I speak with had negative Western Blots and than positive IGENEX tests.

 

Elizabeth

 

Nevergivepup and Elizabeth - Thank you.

 

Ok.. I am good with the Igenex testing and I agree that it is seems to be a good investment of time and money to have this done before IVIG (or after IVIG if you've already done IVIG and are having problems).

 

Now my question is about low S. pneumoniae titers being related to chronic infection - as opposed to being due to a genetic immune deficiency.

 

I am trying to understand that statement better. I know my son has low s. pneumoniae and I know he has been fighting mycoplasma and an infected cyst in his sinus over the last year. Igenex testing just went out - waiting for results.

 

so.. my question is.. if we clear up all infections is there a possibility that s. pneumoniae titers may rise to protective levels and he will no longer have a mile immune deficiency?

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Couple of things... Both our twins Iggs are half a normal childs: Igg1 and Igg3 (1 & 3 specific to fighting bacterial infections). Both our local children's hospital top immunologists and Dr. K wanted us to track those numbers over time to rule out other issues 'viruses', etc. What we found was even though my twins 'looked' about 80% better from antibiotic treatment those deficiencies continued to drop inclusive of the strep pneumo's in our daughter as well as RBC. Our younger son's strep pneumo are starting to turn around.... He went from being deficient in 13 of 14 pneumo titers.... to showing responsive in 5 of 14 pneumo titers. Our LLMD said two very important things to us: 1. a child with congenital Lyme may not make antibodies to the bacteria because they do not recognize the bacteria as foreign (so would not show positive for Lyme via standard testing) 2. That a chid with a comprised immune system lacks in response and may not make enough antibodies to register positive when testing for antibodies (I understood this to be for more than just Lyme and inclusive of other bacteria's) As an alternative, we are testing for DNA in urine and stool. Our twins have no ASO, no anti-DNAse-B, no mycoplasma and Daughter was tested for LYME and is only showing slightly positive on some bands (weak response). Their CaM Kinase is 157 and 148.

 

As you may know, I just recently discovered I am positive for Lyme Disease. I do not know the results of the DNA testing for my children yet but will post when I know more. The 'Lyme Like' antibiotic protocol is definitely working for our older son and we are experiencing an immediate Herxing response in our younger twins. All these things are pointing towards congenital Lyme for our family.

 

I will continue to track their Iggs to see where they are heading with treatment and hope not to resort of IVIG treatments. However, I reserve the right to change my mind if at some point things do not turn around.

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Kimballot: In terms of the S. Pneumo titers, I know that SF Mom's younger son's S. Pneumo titers did improve after antibiotic treatment.

 

I will let you know how my daughter's titers are when we retest in a month. I think that when you have such a chronic infection, like lyme and babesia, your body fights so hard and the bacteria is so sneaky that your body gets worn down and the IGG's even become depleted. I know that my daughter's IGG levels continued to go down and we did not know why. Her B cells were extremely low as well.

 

I have been doing a great deal of research on bacterial/viral infections and their relationship with mental illness, heart disease, cancer, etc... Doctors are now discovering that chlamydia pneumonia is related to heart disease and the HPV virus is related to cervical cancer and H. Pylori causes ulcers and stomach cancer, mycoplasma can cause schleroderma, and lyme can look like MS and Parkinsons, etc.....

 

Elizabeth

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Another important thing to keep in mind for anyone reading this thread -- In our case, we do monthly IVIG NOT just for PANDAS, not even primarily for PANDAS. As you may know, there is a link between immune deficiency, autoimmune disease, and cancer - especially but not exclusively lymphoma and melanoma. For those of you with kids who have "true" primary immune deficiencies and PANDAS, obviously you've already checked off the first two boxes.

 

Of the suspected untreated PANDAS in my family (those with frequent infections, autoimmune disease, and psych/neuro sx), about half got one or more of these cancers by the time they were in their 30's, and the numbers increased with age. I've seen two immunologists (including Dr. B) who both feel strongly that I need monthly IVIG for this reason, even though it's been many years since I've had appreciable PANDAS. Immune deficiencies can also go along with eventually-serious gut and other issues. So one BIG caution - if your kids have primary immune deficiencies, please don't only consider what helps PANDAS and please get at least a consultation with an expert immunologist. I know that PANDAS is very visible, annoying, and sometimes disabling, but there is a lot more to immune deficiencies than PANDAS. At the very least, if one only does 1 or 2 IVIG, I think it would be critically important to monitor the kids' immune systems closely to make sure that their deficiencies actually heal, and not just their PANDAS symptoms.

 

 

Honestly, even if the monthly IVIG DID make my kids' PANDAS a little bit bumpier (thankfully we've seen the opposite), I would probably still do it because a little bit more eye twitch or need to line up ones' toys "just so" is nothing compared to what I've seen my family members go through with their cancers, gut issues, etc. I don't know how I'd ever face my kids if something serious happened to them later and I had elected NOT to treat them multiply when they were young, for behavioral reasons. That having been said, my kids' behavior stuff isn't that bad even at its worst, so it wouldn't be that tough of a choice.

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Our son was very responsive to the IVIG treatments but we never followed Dr. K's antibiotic protocol. My son was always more responsive on the higher dose Azithromycin (went up and down 4 times) and shed a lot of symptoms when we added Omnicef to Azithromycin. Dr. K is very aware of our not following the protocol. He was supportive because it was working. He was also mystified by my son's recent issues of blood in stool that quickly resolved once we saw an LLMD and started Alinia. Nothing short of a miracle for us because we were dealing with it for over 7 weeks.

 

I NOW think their needs to be an extensive testing list prior PANDAS diagnoses even if there is an obvious strep trigger, I do believe IVIG can be helpful but can create a huge herx if there is multiple infections that were not addressed properly with antibiotics confusing both parents and Dr.'s.

 

If I remember correctly you suffer from MS which can be Lyme induced in many cases. I am not sure if you have been tested yet but you might want to consider doing the Igenex Western Blot via Igenex ($260.00) to see if you are positive. If you are, then follow with DNA testing for your daughter. IVIG/antibiotics would not muddy the waters on those results. LLM just posted some great links about testing and testing results you might want to read under the Lyme heading.

Edited by SF Mom
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Sorry, I am always rushing! Last winter, many of us KeithElizabeth, Coco, and others were intitiating monthly ivig, some kids proceeded to have bad symptoms increase with each monthly ivig. This led to some phone consults with Dr. K where he stated monthly ivig especially low dose can "stir up" the antibodies(another infamous Dr. K scientific term) So out of concern many stopped low dose monthly ivig. However some didn't(my dd, Shaesdd, melanies son, peglems dd) Now we have the lymes issue surfacing, and many of the original monthly ivig'ers are now treating for lymes. So what I am thinking is before ivig, everyone should test for lymes.

Just to clarify, in my daughter's case, she did worsen w/ 2 low dose IVIGs, 3 weeks apart. She has continued with 1.5g/kg every 4 weeks, and has had 5 of them so far. She is doing okay, but every couple of months gets a course of rifampin/augmentin when progress begins stagnating. She is pretty atypical for everything (PANDAS, life in general) so we're just staying the course with whatever seems to help.

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The lyme has really muddied the waters for me. I am not sure which way to go. After all, many of our parents have found out their children may have lymes and also parents have it. All of this discovery is great, and leading to better health for our children! I am still stuck on why multiple ivig is harmful to Pandas patients. I do not see any cases of this, now that we have eliminated the lyme component. Plus Dr K gave three ivigs to SFMOMs son who saw great improvement. (Although now may have lymes too). Co infections are crucial for resolution, so maybe ivig is all wrong. It appears many just need abx, like Murphy thinks and Saving Sammy. Is this all infection, and not autoimmune? Now I am really confused? If u feel coinfections lead to immune def's then maybe ivig is ALL wrong. Is this why Trifilleti calls ivig a cooling off and pushes abx, multiple types like cefdinir and biaxin?

 

The bolden statement is the conundrum....

as ds had obvious infections.obvious remission..

the last onset..was not from strep or other bacteria...but myco p....we did not know this till 10 months later when igg was crazy high...he got somewhat better over the 10months..(we also did taurine for a while)..but as allergy season creeped in we went into full chorea and vocals.....

 

when we found myco p was just the start of using abx as no one would prescibe..but again it was at height of allergy season ...and i will repeat..from some of the papers.(though most people do fine with 1 round of abx)..they treat myco p for months with abx....

anyway...maybe the myco went intracelluar...but not until 2-3 different abx..(nothing really changed and so i was ready to go ivig or pex)..then doing the taper to bring his system down could i have hope again...

i believe there is a component(not on my sons prior espisodes) to this episode where it went autoimmune...

and just like they use steroids for ms, poison ivy, lupus, could his body really even respond to abx..(as i believe it may be now)

 

so to sum it up...some episodes my be purely infectious...some go autoimmune..JMHO

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Also, re. the infection vs. autoimmune disease, did those with Lyme disease also test positive on Cunningham tests for auto-antibodies (anti-dopamine, etc.)? To me, positive tests there would indicate autoimmune activity with expected impact on the brain... and not just direct effects of infectious agents. I'd be curious about looking at the Lyme folks vs others with respect to this.

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My daughter tested extremely high on the Cunningham test (CAM Kinase of 179) and very high on all of the neuronal levels, except dopamine 1. She has had mild issues (compared to our son) since she was born. She had Tics when she was 18 months old and then again at the age of 11 when she got strep. The lyme treatment has gotten rid of the Tics and I would say that she just has some remaining anxiety issues right now.

 

I also want to note that I do think that the hdIVIG may still be beneficial for many of these children, but I think that it is so important to treat the infections first because some of these infections, unlike strep, need multiple antibiotics and for longer periods of time. For our son, the high dose azithromycin was not as beneficial as the combo of azith and omnicef together.

 

Our daughter, who has never had an IVIG, is scheduled for a hdIVIG in one month and we are now completely on the fence as to whether or not to go through with it. If she were younger (she is almost 12), I would probably hold off on it and see how the rest of her healing process progressed throughout the year. I know with our son, we plan to just wait and see how he progresses since he is doing so well and he is only 8 years old and he has had so many IVIG's.

 

Elizabeth

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Wow, by the time all of you Lyme folks, those with other multiple non-Strep infections, etc. get sorted out, my kids may be the only "classic PANDAS" left on this board!

 

I thought I would add to this that when I had my REALLY bad, more-or-less chronic episode as a teen, I turned out to have multiple infections. I was treated with multiple antibiotics simultaneously, and the PANDAS did resolve (that episode anyway).

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That is interesting!! You know a couple of us have speculated that maybe it is the combo hdIVIG/multiple antibiotics that will work for 'most'.

 

Also wanted to say our LLMD did say there are a lot of things that can throw the body into a HYPER IMMUNE response and we may never unravel the 'actual infecting agent'.... vitally important to go with what is working as long as you can sort out Herxing verses and negative response.

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And how DO you sort out Herxing vs. negative response? My best guess, based on what I've seen in my kids, is that Herxing (what I assume is herxing - reactions immediately after first IVIG, reactions after starting a new antibiotic that ultimately kicks the infection) is characterized more by its erratic nature. During these periods, my kids have been jekyl and hyde - great all day, then BOOM a sudden quick PANDAS punch (little as a few seconds, much as a couple of hours), then back to good. Very quick alternation between being totally normal and doing strange stuff - for as little as 4 days, as long as a couple of weeks (after first IVIG). When they were sick but untreated, it could vary some but was much more steady state.

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