immune complexes

[peglem]

My daughter is still (since a big flare in March) having difficulty with her hands. In March the rheumy called it strep reactive arthritis. Its currently flaring again, w/ muscle cramps and swelling. She cannot use them much. The ped said today it could be immune complexes depositing in her hands and wrists. Dealing with this does not leave me much time for reasearch...so, what do you know about immune complexes, and could her IVIGs make this worse? What clears complexes?

[JAG10]

Peg, I just asked Dr B about C3D last week. He said the IgG does bind with the bad antibodies so the body can get rid of them. It takes awhile for C3D levels to decrease. A lot of folks on the Lyme board are well versed in the detox department, we've only tried AbsorbMoreToxins with glucomannan, bentonite clay and activated charcoal, but it binds with everything, so give hours away from other meds.

 

I'm sorry if this wasn't what you were asking about, hopefully others will chime in, maybe Laura?

[peglem]

I'm just trying to figure out what's going on...and tired of trying to comprehend the immune system. Honestly, why does everything have to be named with letters and numbers? It gets so confusing. I can't even understand (except on a very rudimentary level) how its supposed to work, no less what is not working for my child.

 

From what I gather on this issue- the complexes are supposed to be formed-so that's something normal happening- then the complexes are supposed to be destroyed by some other immune component. If the complexes get deposited in tissue or joints they can cause inflammation and disease.

 

That could explain the swelling in her wrists and hands, but the constant contortions and weirdass movements-I just want this better. It'd be swell if it would get better w/o my having to understand, but how can I know what to do w/o understanding? Anyway, that's my very long way of asking of anyone knows if IVIG contributes to the formation of these complexes, and if constant high levels of IgG (we infuse 1.5g/kg every 3 weeks)would make it harder for the body to clear the complexes? Or do I have this very wrong?

 

Making things worse, I've developed some hip/lower back problems that require me to take painkillers. This fuzzies up my mind so I have trouble following my own train of thought. Ain't no way to live!

[LNN]

Peg,

There are several complex systems that get mentioned in Pandas/lyme. I first learned about C3D from Dr B, who seems to test for it as a general marker for an active infection (doesn't indicate what that infection might be, but I've seen RA commonly mentioned when I googled.) C3a is a complex that's often activated in early lyme but sometimes dampened back down to normal levels in chronic lyme. C4a is a complex that can indicate lyme or mold as a trigger and probably some other things as well.

 

I have a very crude understanding of complexes - they seem to be keys for my kids - both have high C3d levels, one also has high C3a and the other also has high C4a. So measuring the complexes is something I've tried to learn about, but it's way over my head.

 

I suppose it's possible that complexes introduced or activated by IVIG could cause some sort of joint problems. But my rudimentary understanding is that complexes should drop over time (weeks? months?) and if it's still a problem 4 months later, something doesn't seem right. Is he measuring complexes to run this theory to ground? If so, which complexes is he measuring? If not, I'd push him to investigate. Perhaps measure all three of these complexes (and if any are high, measure over the course of time).

 

I think it's also possible that if caused by complexes, the RA your daughter has could be innate rather than from IVIG introduced complexes, which would make me question whether there's an ongoing infection of some sort. You've said in the past that rifampin (I think?) is very effective for your daughter. Ask yourself what infections are particularly susceptible to this abx. Maybe the theory that immune complexes are responsible for the RA is correct but maybe the assumption that strep is the culprit isn't.

 

I am NOT trying to toot the lyme horn here. You've been here long enough to have heard the whole lyme discussion and you're enough of a savvy advocate that I absolutely don't want to come across with a "gee, have you considered lyme" comment. I'm only trying to toss out a few ideas about what can make complexes rise or cause problems aside from IVIG.

 

I just lost so much time ignoring or explaining away clues that didn't fit my or my doctor's ideas of what was wrong. In hindsight, they all meant something. If you have the energy, I'd keep pushing for answers on this one. RA is not supposed to be a side effect of IVIG.

 

Laura

[peglem]

This is the 1st time the pediatrician has mentioned this. The rheumy tested for some complexes, I think. In the end, the only rheumy stuff that came back high was human parvo IgG (but IgG testing not reliable w/ the amt of donor IgG she gets) and histone antibodies (indicates drug induced lupus). The histone was moderately elevated, but was still elevated 2 months later. She is not on any drugs that are known to caused drug induced lupus, and she doesn't have other lupus criteria (anymore). I feel like she's a medical freak. Nobody seems to be able to figure her out, and just when we think we've at least got everything going in the right direction, up pops something new and strange. Sorry-I'm worn out.

 

So, complexes are antibody clusters? Do I have that right?

[peglem]

Well here's a very simple definition and explanation:

http://thyroid.about.com/library/immune/blimm21.htm

[kimballot]

Peg -

 

I, too, have a rudimentary understanding of complexes - but this is what I know so far:

 

My understanding of immune complexes is that they are the globs of "stuff" that normally form when the antibodies attach to the antigen and disable the antigen. They are then "removed" by the body via phagocytosis and other mechanisms of breaking down and eliminating (not sure what those are... but it is probably worth researching ... maybe I'll do that soon).

 

When there is a big or chronic infection, these complexes cannot be removed by the body quickly enough. They are then deposited in joints and in organs (the kidney is a big one). They can cause joint pain and kidney disease.

 

IVIG adds good antibodies to attack the antigens and make complexes.

 

When someone has an AUTO IMMUNE disorder - the same process happens, but it is believed that the good antibodies in the IVIG also complex with the auto antibodies and disable the autoantibodies. The body then has to remove these complexes.. which can take time... and can result in deposits in joints and organs.

 

Dr. Swedo briefly talks about that here http://www.autism.com/videoflv-legacy.asp?flv=sd08-46-nimh_swedo.flv&h=240&w=720&VID=84 and refers to it as "internal pheresis" because it is removing the auto antibodies through internal mechanisms.

 

From my discussions with Dr. B after my son's post IVIG exacerbation, I was left with the impression that we should expect to see elevated immune complexes after the first IVIG and that some of those complexes were likely deposited in various parts of the brain (an organ), since that is where the autoimmune response was occurring. He told me that we should see the exacerbation decrease as these complexes were removed, and that we needed to keep doing IVIG for a while to keep the good antibodies up and prevent another infection (my son has some immune deficiencies).

 

It made sense and we have seen much improvement over the last 4 months - though it was gradual. He has not complained of joint pain in several months - and joint pain was constant prior to the first IVIG.

 

If you continue to see elevated complexes, I would suspect that there is an ongoing infection that has not been removed. The antibodies are complexing with something. I am assuming that your daughter has been worked up for lots of known infectious microbes.

 

I truly believe that many of our children have infections from yet un-named microbes. I think that is why some of our children do well on certain antibiotics, even though they don't have elevated titers or any hint of microbes we know about. I also think that is why some people see relief with lyme doctors - it may not be lyme at all, but perhaps the antibiotics are helping to fight some microbe that we are not yet able to test for.

[peglem]

Thanks Kim, that makes a lot of sense. The problem now is that the IVIG makes infection workups pretty difficult. I'm now loathe to try the rifampin again, because the last time we used it (last October) we did not get the wow reaction we'd seen previously, and its a known lupus inducing drug.

 

Can yeast infections cause immune complexes? I suppose anything w/ an antigen can complex w/ antibody.

She had white spots on her throat today. But, for the 1st time in years, a negative rapid strep test. Sent a swab for culture. We have been getting +rapids w/neg. cultures, so this should be interesting.

[PhillyPA]

I would try to get her a spinal tap. Test her for NMDA encephalitis antibodies as well as other auto immune type encephalitis. NMDA encephalitis renders children mute and waxes and wanes like pandas.It was just discovered in children in 2008 so your daughter was probably never tested for it. You need a spinal tap. Has she ever had a spinal tap since her collapse at around age 8? If my memory serves me correctly she was autistic but progressing and regressed around 8 years old. Spinal taps can be very revealing and perhaps may shed some light on unanswered questions.

[JAG10]

When I asked Dr B about C3D levels last week, I was asking if they were indicative of where a child's body is in this process. So the normal range for my girl is 0-8, and she was 27 last October. I was asking if we retested would that indicate a "status" of her immune function/dysfunction. He said her C3D has likely decreased, but that the results r not used reflectively that way and that it can take awhile for those measurements to come down. So even though she has improved significantly since last October, he didn't see any value in retesting C3D now. I did not ask him about ways to detox the complexes out of the body. I would imagine the only immediate way is PEX, no?

[dut]

Hi ...sorry for typos not on my pc :-)

 

Immune complexes can also be formed by things other than infection..such as penicillin

 

Our dd had serum sickness due to augmentin, it lasted 3 weeks and caused bad arthritis and vasculitis... The body sees the penicillin and forms antibodies and the immune complexes get deposited just as they would with other antigens...

 

The 3 week time frame is usual for serum sickness and I suppose other stuff if the source is removed as antibodies have a half life of 20 days or so..

 

Hope you get it sorted out....

[kimballot]

Hi ...sorry for typos not on my pc :-)

 

Immune complexes can also be formed by things other than infection..such as penicillin

 

Our dd had serum sickness due to augmentin, it lasted 3 weeks and caused bad arthritis and vasculitis... The body sees the penicillin and forms antibodies and the immune complexes get deposited just as they would with other antigens...

 

The 3 week time frame is usual for serum sickness and I suppose other stuff if the source is removed as antibodies have a half life of 20 days or so..

 

Hope you get it sorted out....

 

dut- WOW!! penicillin became and antigen for you!! Is this the same as an allergy? I would think not.. but I am not sure. That must have been difficult to sort through.

[dut]

Hello

 

For us it was pretty obvious cos she had been on the pen for 8 days which is the classic timeframe for this to start when she came out in many hives and full body swelling. The hives didn't come and go tho as they should with a type I anaphalaxis type reaction but coalesced and turn into bruises. She also had some major redness and swellling on her elbows and knees. this got me really scared cos of RA. All this was within 24-36 hours. They did work her up for RA but all was clear.

 

Then as that subsided she started with bad joint pains... Wrist, knee, ankle and had that for about 3 more weeks.. Sometimes bad enough so she was unable to walk.

 

We had to piggy back double dose zyrtec on full dose benedryl and pain killers to keep her comfortable and somewhat mobile. If the end of the dose for all three happened to fall together, she would be in a lot of pain.

 

It's called a type III hypersensitivity and is more usual with old serum type vacs and I think cephalosprins.. not sure about that bit but can be seen with penicillin also. Not super common but our immune dr sees about 3 odd cases a year. Lookning back a bad reaction to amoxicillin by our son was also probably serum sickness.... He did the hives to bruising with full body swelling .. That's the vasculitis bit.. He didn't complain of arthritis but he was only 18 months or so and was super miserable for a long while more than u would expect with a type I anaphylaxis allergic reaction....

 

Our immune dr thinks that it is a similar thing going on as with the common amoxy rash.... Infection and antibiotics at the same time, probably viral, and the body gets it wrong and acts as though the abs is the infection but who knows.... Not much out there on it

 

I believe, immune complex deposition is often seen in autoimmune diseases...

[peglem]

So, antibodies could be complexing with the zith and being deposited in tissues in her hands and wrists?

She's not having an allergic like reaction.

I thought maybe the prednisone was making her better because when she was falling asleep last night, although she was holding her arms stiffly in front of her, there was less bizarre movements. But this morning when she woke up they were stiff out in front again and she was unable to use them.

[dut]

So, antibodies could be complexing with the zith and being deposited in tissues in her hands and wrists?

She's not having an allergic like reaction.

I thought maybe the prednisone was making her better because when she was falling asleep last night, although she was holding her arms stiffly in front of her, there was less bizarre movements. But this morning when she woke up they were stiff out in front again and she was unable to use them.

 

When reading about serum sickness, I never came across ziith being one that did this but hey my reading and knowledge of this issue are probably seriously lacking :-)