When should Ivig be considered?

[laure]

Update on dd10 after Dr. B visit Tuesday. Quick background: She is on 4 antibiotics - augmentin, zithromax, bactrim, tindamax (weekends). She is positive for lyme, and Dr. J suspects bartonella as well. Her only symptom now is pretty intense OCD. She doesn't herx at all. She had no response to quitting all abx for 3 days last week. We do detox, probiotics, the whole gamut. At this point she is scheduled to see Dr N for ART in mid-June. Hoping for a miracle. Beyond that we are considering Ivig per Dr. B and Dr. J. Her anti dNase B titers are still high (980) and ASO slightly down (190). Dr. B believes we will not see relief until the dNase B titers come down. She has been treated for lyme since December 1st. She had a brief honeymoon in Dec and Jan, then all symptoms returned gradually.

Questioning if after all of this lyme treatment, perhaps Ivig could help? Could it hurt at this point? She is suffering socially and relationally because of her OCD/regression/oppositional defiance. If there is permanent damage being done to her brain, obviously we want to stop that in its tracks. Sorry so disjointed - I believe I am suffering brain damage at this point...

Thanks for any advice.

Edited June 2, 2011 by laure

[smartyjones]

At this point she is scheduled to see Dr N in Denver for ART in mid-June. Hoping for a miracle.

 

 

laure -- sorry to hear things are rough. i have no insight into your question of ivig but wanted to comment on ART.

 

we see a dr that does a kind of a form of ART and have had good success with ds6 and ds9. ds6 was more complicated and first son to show pandas symptoms. we were treating with abx and had longer illness before seeking help from integrative MD, who diagnosed muliple infections. after a little over a year of treatment, he is doing well, working on last infection. we'll reevaluate when cleared of infections -- not currently 100% but almost -- unsure if remaining issues are part of his personality - innate or "learned' after 2+ years of illness - or other effects such as auditory processing, again, innate or illness induced - ?. but, have seen good results with this path.

 

 

ds9 has seen quicker results. had a few things i questioned b/c of younger son's diagnosis -- ie. extremely poor sportsmanship. last fall, saw big downturn, some classic pandas symptoms. integrative dr diagnosed multiple infections - strep, all TBI. he saw quick results with treatment. took a big downturn after i started a high level probiotic. improved when off that. through testing, dr said that probioitic was very bad for him, he registered much irritation with it. since off it, he's steadily improving. also, just found a new or newly uncovered virus -- more improvement when treating aggressively for that in last few weeks.

 

i question the role of viruses in all this. i believe ann corson has some good info about virus involvement. i mention that b/c you mention no herx and no responce to quitting abx. i think the relationship btwn the bacteria and viruses is complex. our dr talks of the 'alpha dog' concept (this is all my interpretation) that you may have many pathogens but one is presenting stronger and if you rid of that, another may gain strength and cause trouble. our theory is to rid or at least downgrade all the troublesome infections. lately, i have wondered if some of ivig success may be doing that b/c some of the infections are ones that are common but don't cause such extreme problems for the general public but for some people they are extremely troublesome.

 

good luck. i just wanted to share our story of a form of ART that has seemingly been a good path for us.

[laure]

At this point she is scheduled to see Dr N in Denver for ART in mid-June. Hoping for a miracle.

 

 

laure -- sorry to hear things are rough. i have no insight into your question of ivig but wanted to comment on ART.

 

we see a dr that does a kind of a form of ART and have had good success with ds6 and ds9. ds6 was more complicated and first son to show pandas symptoms. we were treating with abx and had longer illness before seeking help from integrative MD, who diagnosed muliple infections. after a little over a year of treatment, he is doing well, working on last infection. we'll reevaluate when cleared of infections -- not currently 100% but almost -- unsure if remaining issues are part of his personality - innate or "learned' after 2+ years of illness - or other effects such as auditory processing, again, innate or illness induced - ?. but, have seen good results with this path.

 

 

ds9 has seen quicker results. had a few things i questioned b/c of younger son's diagnosis -- ie. extremely poor sportsmanship. last fall, saw big downturn, some classic pandas symptoms. integrative dr diagnosed multiple infections - strep, all TBI. he saw quick results with treatment. took a big downturn after i started a high level probiotic. improved when off that. through testing, dr said that probioitic was very bad for him, he registered much irritation with it. since off it, he's steadily improving. also, just found a new or newly uncovered virus -- more improvement when treating aggressively for that in last few weeks.

 

i question the role of viruses in all this. i believe ann corson has some good info about virus involvement. i mention that b/c you mention no herx and no responce to quitting abx. i think the relationship btwn the bacteria and viruses is complex. our dr talks of the 'alpha dog' concept (this is all my interpretation) that you may have many pathogens but one is presenting stronger and if you rid of that, another may gain strength and cause trouble. our theory is to rid or at least downgrade all the troublesome infections. lately, i have wondered if some of ivig success may be doing that b/c some of the infections are ones that are common but don't cause such extreme problems for the general public but for some people they are extremely troublesome.

 

good luck. i just wanted to share our story of a form of ART that has seemingly been a good path for us.

 

 

 

Thanks for your insight. I have heard similar stories from others who use ART, so we are very hopeful. Just wondering...we increased the probiotics and also began using bentonite clay at about the same time as the problems started, or maybe just before. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

Edited June 2, 2011 by laure

[laure]

Smartyjones,

Thanks for your insight. I have heard similar stories from others who use ART, so we are very hopeful. Just wondering...we increased the probiotics and also began using bentonite clay at about the same time as the problems started, or maybe just before. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

[lismom]

Smartyjones,

Thanks for your insight. I have heard similar stories from others who use ART, so we are very hopeful. Just wondering...we increased the probiotics and also began using bentonite clay at about the same time as the problems started, or maybe just before. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

 

 

Laure, I just wanted to say what we experienced with the sacc and probiotics. My son presents with mood liability and intense tics with high probiotics and sacc. I went off both and back down to smaller strain load and billion amount with another brand and added biotin. I saw this reaction more than once so I knew it was connected. Whether it was die off or the body didn't need the load, just wasn't good for him. Kathy

[smartyjones]

. How common is a negative reaction to the probiotics? I give her saccharomyces boulardi (25 bill in AM, 25 bill after dinner) and also NSI 15-strain brand 350 bill last thing at night.

 

 

hmm -- i was going to respond that i don't think all that common - then i see lismom has responded. i'm not sure. i would have never dreamed it was the probiotic that was troublesome. i kind of thought, the more the better. i've since found out that is not the case of all people -- some chronic fatigue websites caution against taking probiotics 'willy nilly'. it was only due to a post on the pandas board that got me thinking. . . and then researching.

 

do you know if the ART dr will test supplements you bring in? i'd say first, find that out. if it's only a couple weeks and you can test, i'm not sure if you should wait and test or try stopping - ?-- so many hard decisions in all this!

 

my ds was doing well -- about 6 weeks into treatment, when we started -- it was 6 strains, 25 billion. he is not on abx so we are not in catch up game of trying to repopulate while killing off. in about 2 weeks, he starting having the troublesome symptoms. we went for a special visit with dr a couple weeks later, due to symptoms. infection healing looked on track -- we thought could just be morphing of symptoms. darn it -- i had probiotic in my purse to check but forgot -- at that time, didn't think had anything to do with it. there was a post about th-1 and th-2 reactions and probiotics that got me thinking. i wrote to the company and asked for info -- they suggested i try the d-lactate free formula. i started researching d-lactate acidosis -- usually only in kids with short bowel resection b/c can't properly digest the carbs and the probiotics. it's a bizaree turning sugar into acid in the GI tract. the universal feature is impaired mentat status - sleepiness, stupor, slurred speech, headache, hyperventilating -- usually requiring hospitalization. however, lesser symptoms are aggression, inabiilty to concentrate, agitation, carb craving, 'unhappy', irritablity -- exactly described ds! these were not his presenting symptoms that we initally sought help for.

 

i took him off it. 10 days later, still the same. added s boulardii b/c thought that is different in the GI tract and may help. 2 days later, he was better than had been in about 5 weeks. a few days later, he tanked. took him off s. boulardii. took about another week or so and then saw improvement.

 

i've found conflicting info about what strains promote lactic acid -- usually a good thing to inhibit the growth of pathogens and stabilize flora. some say l. plantaruim and l. salivarius promote much. ours had both those. others say l. acidophilos -- which ds has taken without a problem, but at half the dose of troublesome formula. d lactate free probiotics seems to be an issue discussed in the autism community. i've also read lacto GG, which is culturelle, can successfully treat d-lactic acidosis. i didn't try this b/c i was concerned about throwing more worse after bad and creating more troubles.

 

i wasn't sure if would show as bad with ART if is a complicated reaction but dr tested and said, "i don't know what's in that, but it's not good for him at all.' he has previously okayed things i've brought in so i don't think he just wants to promote his recommendations only.

 

hopefully, you'll find some answers in a few weeks. oddly, ds has always been an avid reader. during this time, all he wanted to do was read -- probably read a year's worth of books in 2 months. is there anything she can find engaging for a few weeks before you get to the dr?

[MichaelTampa]

It sounds like you're saying the lyme treatment helped a good bit, but only so much, and now symptoms are coming back, whether those abx are used or not?

 

There can be more to good lyme treatment in addition to abx to kill the lyme bugs, and I wonder if that could be the issue here. These lyme bugs live in community called biofilm with other things--fungus, worms/parasites, heavy metals and even minerals. These other things protect the lyme bugs from the antibiotics and the immune system. So, addressing these other issues with their own treatments can be helpful. The worms are bigger than fungus and bacteria, and in that sense can be the linchpin and an important one. For example, there was an article some months ago from some lyme society in NY speculating that the worms actually farm lyme spirochetes/bacteria similar to how humans farm cows--all this in the sick person's body.

 

Treating just the lyme bugs but not the other aspects could be one explanation for making good progress, but then ultimately stalling with symptoms getting worse. So can failing to treat a coinfection, and this happened to me just recently as I had stalled and then we added treatment for babesia and starting making significant progress again. This happened even though symptoms really did not point toward babesia very much at all, if at all, and I'll not that babesia, while a blood parasite, is a parasite.

 

Other things to consider that I heard a lot about at Dr.K's conference a month ago are MARCONS and CCSVI. MARCONS is a staph infection in the nasal/sinus area that will cause problems on its own as well as creating biofilm for the rest of the body. CCSVI is a blockage in the veins in the neck area which return blood from the brain. This blockage can cause low oxygen blood to be trapped in the brain. The blockage is caused by biofilm, and ONE treatment for this is angioplasty; of course, if the blood is still very thick from biofilm the blockage can just recur quickly. This is a very recent discovery that many with MS have this blockage, and is relevant for the lyme community as many with MS have undiagnosed lyme causing their MS symptoms. Apparently a few miracles for lyme patients have occurred by treating CCSVI with biofilm, for those with lyme treated but remaining neuro symptoms. One such miracle lasted just 4 days until the blockage recurred, and while that recurrence was a shame, the immediate relief of symptoms from the procedure certainly provided clear direction in terms of what was causing symptoms.

 

Anyway, so those are some additional things to consider, and perhaps your ART person can consider/test for some of these issues.

[ShaesMom]

Your post doesn't state if you are thinking of one HD Ivig treatment or multiple Ivig's (?)

 

This is what our experience has been briefly:

 

My dd was initially dx'd with PANDAS 5/09. Her ASO was 1200 & I don't remember the exact number but I believe her Dnase was in the 400's. July 09 she had HD Ivig & then three weeks later she started ld Ivig for immune deficiency and has continued every four weeks for the last two years. Lyme dx came last month.

 

We saw an initial symptom improvement after the HD Ivig & continued improvement after each monthly dose. However during the last two years her ASO titers have never gone below 500 & Dnase sits in the 200's. Despite this I would say for the most part she is in remission for the PANDAS (no return of majority of sx or any OCD).

 

In November of last year she picked some suspected virus & spiraled downhill from there. The only behavior that returned was the raging. I never felt this was PANDAS raging-it was somehow "different". I believe the most recent episodes are actually Lyme raging.

 

IMO-knowing what I know now-I truly believe that the Ivig has helped with LD & coinfections & PANDAS. I suspect that without Ivig she would be a lot sicker than she is from the LD. But she still has elevated strep titers and therefore there is still strep hiding out somewhere in her body.

 

So if your question is will IVIG rid her body of the high Dnase & ASO titers-I would have to answer-not necessarily. We actually had an appt with an ENT this morning and she will have a T&A. Hopefully this will eradicate the remaining strep from her body & her titers will return to normal.

 

If your question is will Ivig help with her overall symptoms - from OUR experience- I would answer "yes" it is very likely. But I understand that hasn't been the experience of every family.

 

I know our family has viewed Ivig has a mini miracle. I also know my dd8 looks forward to her monthly Ivig treatments because it helps with her fatigue & leg pain. She definitely has more energy & is in a better mood afterwards. However, she also has what we now believe to be herxing 48 hours after each treatment. She lives with a headache, nausea, and low grade fever for about 12-24 hours and then feels great after they pass.

 

Good luck with whatever you decide!

[laure]

Wow, thanks all, a lot to consider. Although we have spent hundreds of dollars on 2 Igenex tests, Quest tests, and blood draws, I don't believe parasites have been tested (not sure though, but other than the Igenex co-infection panel, I haven't noted anything else.) I wish the 3 bartonella tests would have shown positive and we would have a clear path. I wish she would have a herx and we'd have a clear path. I wish she had some physical symptoms and we would know more... but for now all we know is that antibiotics initially did heal her LITERALLY OVERNIGHT, so we had a wonderful December and January, where she seemed as surprised as we were that she could suddenly turn a door knob, play with toys, carry things home from school, nearly everything. So at least we know this isn't all in her head - as does she. That helps a lot. Can't wait to see ART doc and learn more. If he doesn't find a lot of stuff, then we will go ahead with the ivig (HD, probably 2-3 according to Dr. . She is on board for sure, yesterday I followed her to the top of the football stadium, where she was sitting on the edge of the ledge...so cannot go on like this for long.

[MichaelTampa]

Literally healing overnight from abx, I would say, is a big clue, as that is a very unusual experience, at least in the lyme world. Now, what it is a clue exactly of, I have no idea, but I should say that is something you should keep thinking about and as you network with others, knowledgeable practitioners (not necessarily the useless ones), you might want to point that out and keep exploring why that might have happened.

 

Regarding the parasite/worm testing, I would seriously suggest not wasting any money on any stool testing for the parasites/worms. ART would be the only thing worthwhile, I would think. Every human has parasites/worms living in us, and they are not all in the intestines that would even have a chance coming out in the stool. In most (all?) chronic lyme cases, parasites/worms are a serious issue to deal with, and so it makes more sense to assume they are there than it does to run a stool test. Now, there are many types, and perhaps ART can help gear where the worst problems are, or at least priority for the moment to treat.

[momaine]

When my dd had only a pandas diagnosis, the first 3 hd ivig were miraculous. After that, the next two, not so much. But then we got the lyme/bartonella diagnosis and started lyme treatment. The first one after lyme treatment didn't make a noticable improvement, but we are now a few weeks post the second hd ivig after being on lyme treatment for 12 weeks before, and dd began showing improvement again sometime in the second week post ivig. (which was typical with her other ivigs) She's been holding that improvement steadily for maybe two weeks or so. (knock on wood) I feel that her ivigs have been very helpful. It's hard to know with the ones that didn't obviously help, what the reasons were. Would she have been even worse without them? maybe. They certainly didn't make her worse.

Edited June 2, 2011 by momaine

[smartyjones]

have you seen this? http://www.townsendl...ildren0710.html

 

i don't know much about this website - it was posted as a good source on the pandas forum, then the poster recanted -- i hadn't really checked it all out and don't know that it is/is not a reputable source. however, this is an article of a presentation from dr ann corson - so of course, may have writer's embellishment. it may be helpful to you as it discusses other infections so you're more prepared to discuss with the dr. issues that may be going on.

Edited June 2, 2011 by smartyjones

[Bill]

Update on dd10 after Dr. B visit Tuesday. Quick background: She is on 4 antibiotics - augmentin, zithromax, bactrim, tindamax (weekends). She is positive for lyme, and Dr. J suspects bartonella as well. Her only symptom now is pretty intense OCD. She doesn't herx at all. She had no response to quitting all abx for 3 days last week. We do detox, probiotics, the whole gamut. At this point she is scheduled to see Dr N for ART in mid-June. Hoping for a miracle. Beyond that we are considering Ivig per Dr. B and Dr. J. Her anti dNase B titers are still high (980) and ASO slightly down (190). Dr. B believes we will not see relief until the dNase B titers come down. She has been treated for lyme since December 1st. She had a brief honeymoon in Dec and Jan, then all symptoms returned gradually.

Questioning if after all of this lyme treatment, perhaps Ivig could help? Could it hurt at this point? She is suffering socially and relationally because of her OCD/regression/oppositional defiance. If there is permanent damage being done to her brain, obviously we want to stop that in its tracks. Sorry so disjointed - I believe I am suffering brain damage at this point...

Thanks for any advice.

 

 

Just wanted to share that we are in a similar situation. Being treated for Lyme since October. Son has never really herxed. His ASO/Dnase are 246/206 as of April this year; still high but a lot lower than they've been. Lots of small improvements and several major but OCD and dystonia remain significant symptoms. We were approved for IVIG with Dr. B. and are scheduled for the end of June. We have been struggling with the decision to proceed or not. Right now - and after consulting with our primary doctor - we are proceeding with the IVIG.

 

Dr. B. told me last October that he did not think my son would see relief from the OCD until IVIG. He is a PANDAS doctor though and clearly attributed the OCD to the strep. Our LLMD attributes OCD and raging to the bartonella. So - we've held off until now.

 

I probably won't remember but if I do - or if you remember to ping me, I'll relay our experience afterwards. He is scheduled for 27/28th June. At this time, my wife will be there with him.

 

bill

[Bill]

"i don't know much about this website - it was posted as a good source on the pandas forum, then the poster recanted"

 

 

That was me I believe. Lots of good articles but I also ran across quite a few that seemed to be a little too self serving. It is not a peer reviewed publication by medical standards so my recant is reader beware, grain of salt, eyes open...Otherwise, some good articles turn up every now and then.

 

bill

[Suzan]

Our first LLMD considers the OCD to be more pandas than lyme. She believes we will need IVIG's in the future but needed the lyme treatment first. My dd9 had 3 IVIG's, all relatively low dose (1g/kg was the highest one). They helped her mental state but not her body. Now that her body is almost better, I'm ready to ask to see if we can go back to IVIG's and maybe kick out the rest of her OCD.

 

Susan