Jump to content
ACN Latitudes Forums

IVIG # 2 do more harm than good?


Recommended Posts

I agree that PANDAS has to be more than one thing. Surely there are some who have Lyme, and surely there are others who don't. I cringe when people on this board state, uncategorically, that X works better than Y, or Z never works. Everyone means well and everyone is hoping that they have the answers that can help others - but I think that it helps most when we are able to say "here are the specifics of my situation, and here is what I've seen over this length of time" rather than just e.g. "Augmentin works the best" or "high dose IVIG works the best." We simply don't have those kinds of answers at this point. And, IMHO, not one of us is equipped to tell any other what kind of medical treatment they should be insisting upon from doctors (other than testing, perhaps); I don't believe that anyone here has a scientific database from which those conclusions can be drawn. I've been on here long enough to see fads come and go, people pushing steroids, then avoiding steroids. Pushing one IVIG ONLY, then... well maybe 2 or 3. Saying one needed to clear infections before IVIG...or saying that one needed IVIG in order to clear infections. A year ago or so, everyone had mycoplasma and needed biaxin. Now it's Lyme.

 

So I applaud nevergiveup for challenging this notion that "multiple IVIGs are bad" and trying to sort out the rumor from the truth. I have been bothered by non-doctors, let alone non-immunologists, strongly suggesting that I was doing the wrong thing by allowing my kids to be treated with monthly "low dose" IVIG. As far as I can see, my kids, who are in fact getting monthly mid-dose IVIG (low-dose by board standards) despite the advice I got here (but in keeping with the advice of a PANDAS-experienced, Stanford-educated endowed-chair pediatric immunologist at one of the world's best universities) are more symptom-free than just about any other kids here. I have been very tempted to stop visiting this board altogether, but I feel like I have to keep putting our experience out there to let people know that there are success stories - at least for now in our 6th month - with the approach that everyone seems to have concluded promises disaster.

 

I think we're stuck doing a tricky combination of thinking out of the box and reality-checking our thoughts. I look at my family, with generations of chronic/recurrent infections, rheumatic fevers, and cancers associated with immune deficiency...and no-one living in a tick-infested area - and I think "gee, I wonder if my kids' immune systems could have been messed up by Lyme...even though they test negative by Western Blot", and the idea just doesn't pass the red-face test. If my kids had weird stuff happening out of the blue with no family history, I'd probably focus more on the infection-wrecked immune system hypothesis. A good doctor should take all of that into consideration in suggesting the best treatment protocol to start with...and then should adjust it from there.

Link to comment
Share on other sites

  • Replies 94
  • Created
  • Last Reply

Top Posters In This Topic

6. I wonder if the "key" isn't always that these kids do (or do not) have a tick borne dz (lyme etc.), but that they actually needed more aggressive antibiotic tx (maybe for intracellular strep, maybe for lyme). Take Worried Dad's kid for example (who for the sake of argument, we will say does NOT have Lyme). But, if he did get a (mistaken) Lyme diagnosis, this would lead a LLD to rx high doses/long term abs (eg. Azith. etc), and then (voila!) WD's son improves (after making marginal headway with multiple IVIG's). It would be easy to say, "Wow! the Lyme was the key." Even if in reality, it wasn't Lyme, and just lurking strep (and strep in the household) which needed to be addressed with more potent full-strength antibiotics. So, I guess what I'm saying, is that it could also be possible for a non-Lyme PANDAS kid to improve if treated for Lyme. (Here I go ruffling feathers!)

 

I think you make a very important point here, EAMom, and it really resonates with me.

 

Both Lyme and PANDAS are clinical diagnoses, but both have a history of being treated successfully with long-term abx. We're learning more every day about the various properties of abx beyond just the treating of infection: immune modulatory, glutamate modulatory, antidepressant, anti-inflammatory, etc. So who's to say WHY, exactly, the long-term has worked for some, like WorriedDad (and I hope our DS, also, since he continues to improve). Is it lyme? Is it strep? Is it myco p? Or is it, perhaps, more about SOME BBB inflammatory response to heaven-knows-what and the long-term use eventually quiets that BBB response?

 

Personally, I would have a hard time accepting a lyme diagnosis for my DS, even if something like Igenex came back with a "positive," because 1) we don't live in a part of the country known for that particular tick, 2) he's never been an "outdoorsy" type, 3) never had a tick bite that I've known of, and 4) he DID test with very high strep titers. So we think we know our culprit.

 

But I can understand some families, especially those who live in prone areas, who have a history of outdoor living/activities and/or for whom increased titers and myco p have been ruled out, continuing to seek some culprit to "hold accountable" for the inflammatory and immune responses they're seeing in their kids.

 

The tricky issue, however, is how to undertake that investigation and receive some validation without appearing to suggest to everyone else on a similar search that you've landed upon THE answer, and that everyone else should take up a similar banner. And, in my experience, it's even trickier with the general medical community. Unfortunately, with many of the well-respected doctors I've met with, PANDAS parents are quickly gaining some of the less-desired reputational characteristics previously reserved for the autism community: that we're desperate parents willing to accept any "quack's" answer for why our child is suffering; that we value hypothesis over science; that we eschew the standard, accepted medical response in favor of the "off the wall" without sufficient research, study or rationale. I can only imagine the look on my regular pediatrician's face were I to inquire about lyme at this point! :wacko:

 

So, for some of us, the "leap" from PANDAS to lyme seems like a pretty big one, and it can be hard to reconcile some physicians readily making that leap themselves so quickly. That's not to say that it is invalid or inaccurate . . . just that it is a new perspective and one some of us will want to view more slowly and from some respectful distance.

 

So here's another vote for considerate tolerance of varying points of view. Lord knows we've all got 'em! :P

Link to comment
Share on other sites

All these infections/labels don't go so neatly into their own little box. What most people here have in common is the idea that some sort of infectious agent or agents are causing neurological symptoms. And for some, it is the active infection causing the symptoms. And for others, the original infectious agent created an autoimmune problem. (and for some, it's both!) It might only be strep induced. OR, as many are finding out, there are other underlying infections at play (lyme, myco, bart, etc). We're talking about immune dysfunction. It doesn't always fit to draw a hard line around a particular trigger.

 

EVERYONE, the docs and researchers too, are still learning. What makes these kids so susceptible? Genetic predisposition? Environmental exposures? The introduction of infectious agents, that they can not process (when the healthy immune systems of others can)? All coming together to create neuro dysfunction in very individualized and unique presentations for each person.

Link to comment
Share on other sites

6. I wonder if the "key" isn't always that these kids do (or do not) have a tick borne dz (lyme etc.), but that they actually needed more aggressive antibiotic tx (maybe for intracellular strep, maybe for lyme). Take Worried Dad's kid for example (who for the sake of argument, we will say does NOT have Lyme). But, if he did get a (mistaken) Lyme diagnosis, this would lead a LLD to rx high doses/long term abs (eg. Azith. etc), and then (voila!) WD's son improves (after making marginal headway with multiple IVIG's). It would be easy to say, "Wow! the Lyme was the key." Even if in reality, it wasn't Lyme, and just lurking strep (and strep in the household) which needed to be addressed with more potent full-strength antibiotics. So, I guess what I'm saying, is that it could also be possible for a non-Lyme PANDAS kid to improve if treated for Lyme. (Here I go ruffling feathers!)

 

I think you make a very important point here, EAMom, and it really resonates with me.

 

 

I agree... that is possible. However, I would still offer that a doctor experienced in treating lyme -- and other similar infections -- would be able to ascertain when another infection is involved (as opposed to strep alone). These doctors are pretty skilled in picking up on other symptoms that would not be caused by strep.

Link to comment
Share on other sites

I may be in the minority, but I don’t see Lyme and Pandas as an either/or diagnosis, nor do I think that Lyme is the trigger for my son’s PANDAS symptoms.

 

Two years ago, my son’s behaviors changed overnight (9/21/08) after getting his first (known) case of strep throat and scarlet fever (9/10/08). Six weeks later, a second case of strep and a second exorcist episode of PANDAS. A long winter of ups and downs.

 

So we’ve done a T&A (7/09), pex (8/09) prednisone tapers (6/09 and 1/10) – which all contributed to helping my son. But none were a “cure” – rather, they moved us from the 10 yard line in our own territory to maybe the 30 yard line in the other guy’s territory. We’re way better. But no where close to victory. So we bite the bullet and do IVIG (6/10). Horrible summer – turning back pages? Maybe. Finally PANDAS stuff goes way after 8 weeks. But then some things remain. Mostly muscle pain and scrambled eggs for brains. (apologies to my son – I don’t mean to sound mean – I’m just so angry at whatever it is that takes him away and holds him prisoner).

 

We did a standard western blot and elisa in March – everything negative. We did Igenex 3 weeks ago and have indeterminates on three starred bands and positives on IGM and IGG band 41. So…I know my son has PANDAS. But I also think it’s possible he has Lyme (we will probably re-test in a few weeks). We live in semi-rural Connecticut. Every person in our town is a candidate for Lyme. So I think it’s entirely possible that a kid with PANDAS can also have Lyme just as likely as the rest of the healthy kids on our street. Having PANDAS doesn’t give him immunity to Lyme. I think he can have both. And no matter how aggressively we treat the PANDAS, something is in the way of full recovery/remission.

 

I guess I’m confused about the conversations that make it feel like you can’t have both. Am I missing something? Or am I just cranky?

Link to comment
Share on other sites

I may be in the minority, but I don’t see Lyme and Pandas as an either/or diagnosis, nor do I think that Lyme is the trigger for my son’s PANDAS symptoms.

 

 

LLM,

where did you get the info that lyme can be a trigger for pandas? just asking. are you saying you are abandoning the pandas route?

 

I said NOR do I think lyme is a trigger - in my son's case. I am not speaking about anyone else's experiences. Only mine.

 

No, I am not abandoning PANDAS. I completely expect that if my son has Lyme and we treat it, it will hopefully help his brain fog, his muscle pain and lower his C3d complexes, which are currently elevated without any obvious signs of strep.

 

However, if we treat and eradicate Lyme, I completely expect we will still be left with PANDAS. My hope is only that we would then be able to enjoy remissions that lasted longer than 2 months. That maybe the brain fog - which is not unheard of in PANDAS but is not a typical symptom - would go away. That maybe he could get to puberty without too many PANDAS flairs and maybe just be like Sam Maloney and have to deal with an occasional mild flair in adulthood that can be treated with a normal course of abx.

 

Again, in my son's case, I don't think co-morbid Lyme is a hard stretch. We live at the base of a mountain of woods, bears, coyotes and wild turkeys. We pull tics off of us and the dogs every year in spite of trying to be diligent. I don't understand why it's hard to make room for both.

Link to comment
Share on other sites

 

So…I know my son has PANDAS. But I also think it’s possible he has Lyme (we will probably re-test in a few weeks). We live in semi-rural Connecticut. Every person in our town is a candidate for Lyme. So I think it’s entirely possible that a kid with PANDAS can also have Lyme just as likely as the rest of the healthy kids on our street. Having PANDAS doesn’t give him immunity to Lyme. I think he can have both. And no matter how aggressively we treat the PANDAS, something is in the way of full recovery/remission.

 

I guess I’m confused about the conversations that make it feel like you can’t have both. Am I missing something? Or am I just cranky?

 

Oh...I ABSOLUTELY agree that your son could have Lyme (and that it should be completely explored) and PANDAS, ESPECIALLY b/c you live in CT! I think you would be amiss to not follow that path, esp. in light of the residual symptoms that are consistent with Lyme and where you live.

 

What I am saying is, that it is important to look at the WHOLE picture. And if you have a kid with clear-cut PANDAS, no symptoms that are typical of Lyme (but not PANDAS, eg. no peripheral neuropathy, no joint issues), doesn't live in a Lyme-y area (and never ever lived in a Lyme-y area, or even vacationed in a Lyme-y area in the appropriate seasons), has no history of a tick bite, has no history of family members or even a family pet having a tick bite... well, what I am saying is this person shouldn't necessarily panic about Lyme. But, if for whatever reason that person did decide to pursue the Lyme route, and a LLD (because they are looking through the "lens" of Lyme, possibly mistaking some PANDAS symptoms for something else, and b/c these Lyme tests do have false positives and negatives) diagnosed some tick born dz...well, it would be possible to see clinical improvement in symptoms (with Lyme tx), even if it were just PANDAS all along. And, then....that person would think that their child had both PANDAS and Lyme (b/c they tested "positive" and they got better with Lyme treatment), when in reality, it was just PANDAS.

Edited by EAMom
Link to comment
Share on other sites

6. I wonder if the "key" isn't always that these kids do (or do not) have a tick borne dz (lyme etc.), but that they actually needed more aggressive antibiotic tx (maybe for intracellular strep, maybe for lyme). Take Worried Dad's kid for example (who for the sake of argument, we will say does NOT have Lyme). But, if he did get a (mistaken) Lyme diagnosis, this would lead a LLD to rx high doses/long term abs (eg. Azith. etc), and then (voila!) WD's son improves (after making marginal headway with multiple IVIG's). It would be easy to say, "Wow! the Lyme was the key." Even if in reality, it wasn't Lyme, and just lurking strep (and strep in the household) which needed to be addressed with more potent full-strength antibiotics. So, I guess what I'm saying, is that it could also be possible for a non-Lyme PANDAS kid to improve if treated for Lyme. (Here I go ruffling feathers!)

 

 

But I can understand some families, especially those who live in prone areas, who have a history of outdoor living/activities and/or for whom increased titers and myco p have been ruled out, continuing to seek some culprit to "hold accountable" for the inflammatory and immune responses they're seeing in their kids.

 

The tricky issue, however, is how to undertake that investigation and receive some validation without appearing to suggest to everyone else on a similar search that you've landed upon THE answer, and that everyone else should take up a similar banner. And, in my experience, it's even trickier with the general medical community. Unfortunately, with many of the well-respected doctors I've met with, PANDAS parents are quickly gaining some of the less-desired reputational characteristics previously reserved for the autism community: that we're desperate parents willing to accept any "quack's" answer for why our child is suffering; that we value hypothesis over science; that we eschew the standard, accepted medical response in favor of the "off the wall" without sufficient research, study or rationale. I can only imagine the look on my regular pediatrician's face were I to inquire about lyme at this point! :wacko:

 

So, for some of us, the "leap" from PANDAS to lyme seems like a pretty big one, and it can be hard to reconcile some physicians readily making that leap themselves so quickly. That's not to say that it is invalid or inaccurate . . . just that it is a new perspective and one some of us will want to view more slowly and from some respectful distance.

 

So here's another vote for considerate tolerance of varying points of view. Lord knows we've all got 'em! :P

 

EXACTLY!

Link to comment
Share on other sites

When I first discovered PANDAS, I consulted with one of the top PANDAS Dr.s and had IVIG's for both of my children. My daughter seemed to get progressively worse after the treatment and I was not getting answers I needed so I decided to change Dr.s. I consulted with Dr. B who, thankfully, ordered a whole series of tests for my kids, including Western Blot Lyme (not igenex). I did not believe my kids had any chance of having Lyme (since we did not think we had much risk of exposure) and they were both positive - on Wesern Blot with LabCorp - we went to our own lab in Houston. These are real results. I feel that if we had not discovered this, the condition of both of my kids would have continued to deteriorate. I followed up with Dr. Charles Ray Jones who ran more lyme tests - through Igenex, and again, the results were positive. My daughter has had long term OCD type symptoms but never had rages or aggressive behavior until March of 2010 and I attribute this to Lyme. Many Lyme Symptoms overlap with Pandas symptoms. OCD can be a symptom of Lyme. A good list of Lyme Symptoms is available at www.timeforlyme.org/signs-symptom-list.html As I said, I am just giving facts. The last thing I wanted to hear is that my kids have Lyme, however, I am hopeful that this discovery will lead to a treatment that will work. I am surprised by the number of Pandas patients that also have Lyme and cannot help but wonder if there is a connection.

Link to comment
Share on other sites

Oh...I ABSOLUTELY agree that your son could have Lyme (and that it should be completely explored) and PANDAS, ESPECIALLY b/c you live in CT! I think you would be amiss to not follow that path, esp. in light of the residual symptoms that are consistent with Lyme and where you live.

 

What I am saying is, that it is important to look at the WHOLE picture. And if you have a kid with clear-cut PANDAS, no symptoms that are typical of Lyme (but not PANDAS, eg. no peripheral neuropathy, no joint issues), doesn't live in a Lyme-y area (and never ever lived in a Lyme-y area, or even vacationed in a Lyme-y area in the appropriate seasons), has no history of a tick bite, has no history of family members or even a family pet having a tick bite... well, what I am saying is this person shouldn't necessarily panic about Lyme. But, if for whatever reason that person did decide to pursue the Lyme route, and a LLD (because they are looking through the "lens" of Lyme, possibly mistaking some PANDAS symptoms for something else, and b/c these Lyme tests do have false positives and negatives) diagnosed some tick born dz...well, it would be possible to see clinical improvement in symptoms (with Lyme tx), even if it were just PANDAS all along. And, then....that person would think that their child had both PANDAS and Lyme (b/c they tested "positive" and they got better with Lyme treatment), when in reality, it was just PANDAS.

Yes, agree with both you and Nancy. I wasn't responding to your posts at all. More the general sense in the last 7 pages of posts on this thread that there's some sort of line in the sand being drawn and we're supposed to "chose sides", that you're in one camp or the other. I feel like there's room for a sick kid to have more than one illness at a time. Nothing in the past 2 years has been black or white for us. Why start now?

Link to comment
Share on other sites

not trying to add fuel to the fire...we do need point, counter point...

but why can't lymes be pandas/pitands...

people didn't realize celiacs could cause seizures till recently....

just read on ts board today another mom who healed her son of ts from gf diet as some celiacs history in family..

the things these kids express are a reaction to something not right in their body...finding causation is key...

so did the kid on the ts board have ts or celiacs..one is the cause the other the effect...

the effect is what we are trying to heal...and maybe the name we give it...or should it be vise versa...

Link to comment
Share on other sites

I think everyone will advise a new parent on this forum slightly differently based on their own experiences, naturally!

 

However, we live the least lyme infested state in the United States and my son did not have one physical lyme symptom because he presented with all OCD/TIC symptoms. After analyzing the intense emotional journey that we have been through, I would advise all new parents to go ahead and do the IGENEX test for lyme and the co-infections on top of the regular lab tests for mycoplasma, strep, etc..... The initial investment spent in testing all of these microbes can really pay out later when a possible IVIG/PEX fails. IGENEX has very few false positives and if one is unsure about the possibility of a false positive, then they can go ahead with the 31 KDa epitope test to confirm.

 

I am not quite sure as to why we are differentiating so much about all of these microbes and how they affect PANDAS/PITANDS. This has not been an issue before when families have had low ASO titers and still had PANDAS issues. We all knew that other bacterias/viruses could still cause the same symptoms. Again, as I have said often, other families who have gone to see our LLMD did NOT find lyme, but instead found mycoplasma and staph to be the culprit of their OCD/TIC issues.

 

I guess I am not quite sure as to what the huge debate is about the different microbes. As I have also mentioned many times, my son had lyme, babesia, bartonella, STREP, and mycoplasma. Peeling away at these layers has brought our son back to us and our family back to a functioning, happy family again.

 

Elizabeth

Link to comment
Share on other sites

Dr. B ordered an entire panel of lab work for my kids, including Lyme, which I had done at Lab Corp in Houston - no Igenex. I was shocked to discover both of my kids were positive for Lyme. I do not believe Dr. B is treating for Lyme since he referred us to a Lyme Dr - this was three weeks ago. I am, however, glad that he ran the tests and discovered this. The diagnosis of Lyme was confirmed through Dr. Jones.

Link to comment
Share on other sites

This forum has been of tremendous benefit in terms of information, varying perspectives, reflections and perceptions of various doctors and their protocols, etc. I wouldn't trade it for the world. But given as this is a developing field of endeavor for everyone involved . . . including the experts . . . aren't we all best served to apply our own particular brands of skepticism and questioning, admittedly to differing degrees, as we seek the most efficable treatment for our kids? And doesn't that inquisitive, intelligent approach to finding what's best for our kids include some open and honest discourse about new directions, findings, "paradigm shifts" and the like? Can't we do that without taking up . . . or being assigned . . . positions at one end of the pole or the other: snarling guard dog and startled bunny? :unsure:

Link to comment
Share on other sites

Guest
This topic is now closed to further replies.
×
×
  • Create New...