Can PEX help if IVIG didn't?

[croatianmum]

So, my son is 13 yo.

we had 2 IVIG's in the past. never checked for lyme or any other co infektions.

 

We are now 11 weeks post 2.nd ivig. My son's tics are now much better, but I feel that they will come back. I don't know why, but I think that this betterment now is not because of IVIG, than because of the waxing and wanning..so, I'm allreday checking for some other option.

 

What are Your experience with PEX after unsecsessfull ivig?

[LNN]

My son had undiagnosed lyme when we did Pex, so its benefits did not last. If you haven't yet checked for lyme, I'd definitely do that prior to Pex.

[PowPow]

Pex helped my child immensely, when ivig did not seem to help at all.

Positive steroid trial confirmed an inflammatory basis, pre ivig and pre -pex

[rowingmom]

And check for coinfections as well.

If lyme returns negative there is still a possibility of coinfection involvement.

[PowPow]

pex can also be only a temporary relief of symptoms if there is an autoimmune process still occurring.

However, that relief of symtpoms can be an amazing thing for their suffering and may also be the a huge help in getting toward more permanent healing.

I say this only to point out that all relapses after treatment do not necessarily indicate a tick-borne infection.

[rowingmom]

@ powpow - Could you please describe your understanding of PANS/PANDAS to me?

 

Perhaps I am being dense, but the definition does include infection-triggered autoimmune response. If tests aren't run to find the offending infection, how can the response be properly addressed?

Edited November 27, 2013 by rowingmom

[PowPow]

I did not say that one should not test for offending infections. In fact, I believe that is crucial. I also did not profess that a response can be determined strictly from pex.

 

There is a huge tendency to presume (and based on much advice from these forums) that Lyme is a factor in many or even every child's PANS symptoms. It may be. However, many, many children have negative Lyme test after negative test. Some blood, some CSF, some urine. If it is negative, perhaps the focus, instead of finding a practicitioner to "find" Lyme or mold, or gluten or whatever the potential offending agent may be, would be to address the faulty immune response.

 

I would not encourage a parent to ignore an infectious trigger, but I do speak from much experience with several children affected, severely, and having had nearly every treatment given for this disorder (including Lyme treatment)~ that if proven accurate Lyme tests are negative, one should go with what works. If that is pulsing Lyme antibiotics, high dose steroids, or having someone wave a magic stick over your kid and proclaiming them healed from what ails them, then do it.

 

There is a huge amount of undeserved anxiety put into nearly every parent on this forum regarding Lyme. Parents whose children are severely ill are terrified to give their children steroids "because someone the forum told me it is so bad for Lyme".

 

Children are being undertreated- as their parents are afraid to try the steroids their PANS docs give them, because these parents have been coached to believe that, no matter how many Lyme tests they take~~ you never can be sure about false negatives!

 

If a suffering child has PANS (which I will be happy to define shortly- though I imagine you meant that tongue-in-cheek and do not really want a definition from me); has pex and recovers, only to relapse; it does not mean that there has to be Lyme or a co-infection invovlved.That is all I was pointing out.

 

I am very happy for those who have discovered that Lyme treatment brings their children back. I am very happy for those who "peel an onion" (excellent analogy, llm!) and get their kids back. I am so pleased to read about qannie, Ophelia, surfmom and others who have found a diagnosable autoimmune illness that can be treated and restore quality of life for themselves and their children.

My heart just breaks for those who pursue autoimmune treatment, see it work, even if only temporarily and drop it, in favor of basing questionable treatment on even more questionable results. It happens far too frequently.

 

I will be happy to share "my" definition of PANS and PANDAS, though it can be found, in summary, on the NIMH website :

 

http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml

 

I hope all realize this response is respectfully submitted, with much appreciation for the parents on this forum, who all have the same desire to bring our suffering children back from the brink of PANS.

Edited November 30, 2013 by powpow

[PowPow]

Croatianmom,

Sorry to hijack your thread and your question about pex.

What I was trying to say to you in my first, very brief post- was that if you have some "proof" that there is an autoimmune response at play (and the reason for the proof is that pex is very invasive with some potential for danger- you would not want to do it on a "hunch")--

If you have some "proof" of autoimmune response (i.e- positive response to steroids, pos ANA, pos dsDNA, elevated Sed Rate, there are many other possible markers) and you have the oppoutunity for pex~ GO FOR IT!

best wishes for your son.

[croatianmum]

thank You all.

 

Unfortunatly, my son had very little tests done because we are in europe, where pandas is even more controversal than in USA.The ones we have done all came back OK, except for high ASO titers which was elevated even on HD abx .

 

My son, unfortunatly had a very bad reaktion to steroids. He was so, so ,so worse during the 5 days course of prednisone. It took him 21 day to come to the piont before prednisone, and far from beeing good. I just don't know any more.

 

about Lyme - many parents advised me to do the testing - even if I do the lyme testings - but they often come false positive - what do I do than? No one in our country will be willing to treat him for Lyme whiteout positive tests. So, a dead road.

 

I also suspect bartonella because of the rash my son used to have on his back (strech marks, very red). I sent pictures of the rash to a Lyme specialist dr. in UK, asking for opinion and he said it looks like bart..But what now? I don't have the money any more to go from our country to another one to see a doctor. My son is currently in treatment with dr. K; who diagnosed him with pandas and he is very helpful, answering emails ecc., but I feel it's not engough because it's difficult to treat a child with pandas by email.

 

So, from my piont of wiev; I have no proof of autoimmune response..because no testing was done when he was in a flare, except for prednisone course wich made things worse.

 

Eve the facck that my son is now 2,5 month post 2.nd IVIG and doing better, I feel that his tics will come back again, so, I'm exploring other options..asking questions..answers..

 

Most of You also know how hard it is to treat pandas in USA - can You imagine dealing with it from outside USA??

 

 

Most of the time I'm my son's advocate and doctor.

 

everything I know I learned thanks to You people here and on FB who are always willing to help and answer to my questions, thank You for that.

 

So, what's next..?Lyme testing; Bart testing ecc.. PEX? plasmapheresis, another IVIG?

 

Honestly - I don't know. For now patience is the most important weapon that I need..

[LNN]

Croatian mum - the problem you could have with testing using a lab here in the US, like Igenex, is that they're going to be testing for disease strains that are dominant here in the US, not the strains that are common in Europe and Eastern Europe. (not to mention the high expense of the tests, the shipping and difficulty getting a sample drawn and sent to them).

 

If i were in your shoes, I'd 1. ask Dr K if he has any colleagues in Croatia who can help you and 2. look for a lyme specialist in your area and 3. if these weren't possible, consider Stephen Buhner's books on treating chronic infections with herbs http://www.amazon.com/s/ref=nb_sb_ss_c_0_11?url=search-alias%3Dstripbooks&field-keywords=stephen%20buhner&sprefix=stephen+buh%2Caps%2C221

 

I agree with PowPow that not all Pans symptoms are lyme or caused by other tick infections. In an ideal situation, you'd explore all sorts of triggers. And some parents have pursued lyme treatments only to find something else was the issue. But in your situation, you may need to do things in a less than perfect way and you may not be able to find out the cause. You may have to just try various things (hopefully one thing at a time) to see what helps.

 

Aside from using Buhner's books, I'd also look for someone in your country who can help with any gut issues. My son has been thru IVIG and Pex and long term antibiotics for lyme and all these things helped in their own way. He's been off antibiotics for 8 months and doing fine no symptoms - except for a tic. I think that tic comes from yeast and a leaky gut - he tics when he has high toxins in his system. So in addition to infections, gut issues can also trigger tics. So that may be something else to focus on. Things that heal the gut may also help make his body stronger to fight anything else that's there.

 

Hang in there. Sometimes gifts come in disguise.

[Hopeny]

This lab in Europe I believe is an Igenex type lab http://www.infectolab.de/index.php?id=32&L=1.

Regarding Lyme testing, there is no definitive test for Lyme. The clinical diagnosis is based on symptoms supported by directional markers in bloodwork (not just Western Blot but other tests as well) . Some other infections, such as mycoplasma, commonly present with Lyme, so this can be another clue. This is well described in two books I would recommend, Cure Unknown by Pamela Weintraub and the new book Why Can't I get Better by Dr. Richard Horowitz (he also briefly discusses Strep and PANS).

 

The complicated issue with diagnosing Lyme & Coinfections is that there are literally hundreds of symptoms they can cause making some of these cases true mystery diagnosis.

 

My personal view is that all avenues should be considered, including the possibility that some psychiatric disorders may not be infection related at all.

 

Not to hijack the post but I feel I must respond regarding Lyme. I am not a doctor and this is not medical advice. Powpow I am one who frequently recommends Lyme evaluation by an LLD because the criteria that inexperienced doctors use to diagnose a "positive" case were proposed as surveillance criteria and exclude a number of diagnostic factors excluded because of the Lyme vaccine that was withdrawn from the market. It is unfortunate that your treatment/diagnosis was unsuccessful, however there are thousands of cases where someone was told their Lyme test was "negative" when in fact there was sufficient evidence to warrant further exploration and the disease progressed terribly for that reason. In my own daughter's case, with her pretty much classic Lyme presentation, I was told all of her bloodwork was "negative", frankly having no idea of what Lyme or anything else was. I know now of course at that early stage of the infection it was impossible to test positive, which is why several states now require text to say something to the effect of negative test results do not exclude Lyme infection . Had she been treated at that time, her life would be a lot different now, Lyme & Co are much harder to get at after they have had time to burrow into the body, and much more likely to cure. Fortunately after 1.5 years going untreated, she tested "positive". I would give anything to be able to go back and question that "negative" test.

 

In any case we all have freedom of choice, anyone is free to disregard any of my posts If I can help one or two kids, then it's worth it

Edited November 30, 2013 by hopeny

[PowPow]

croatianmum,

I cannot imagine trying to treat this outside of the USA. I had a horrible time, even with excellent insurance, ideal geographic location, believing doctors, both spouses in medical profession, etc..

You have my utmost respect.

 

hopeny,

I am sure that your (and others') lyme posts have helped many more than one or two kids. Honestly, I do. I just want to show another, possibly equally effective, route. Thank you for the smiley face at the end of your post~~ I hope we are all still forum friends

[croatianmum]

thank you all again.

 

I have contacted lyme doc. in our country and he is willing to make some lab tests but we need to wait some more time because we are 2.5 month post IVIG.

 

You should also know that my son was not diagnosed for 7 years (or more), we went from one doc. to another, spent most of our money on some wrong tests..When my son was at his very worse (even echolalia) at the age of 8; i qiut my job so I could stay home with him and help him with school and general things. Our country like many others is going to the economy crisis, no jobs here.

There is no money left right now not even to send his blood to some other country like germany or UK.

Also,

 

When my son was growing up he was sick most of the time..always something, some viruses, infections, ecc. Who knows what was going on and how many things were undiagnosed. Lyme is also possible - he grow up with 6 dogs, (my mother has them - working dogs, not pets). The dogs have lot's of ticks every time they come from a walk in the wood and my son is spending a lot of times with them. I can not rmember ever beeing beated by a tick - but, maybe we missed some minor infection..who knows. Even than I was very careful when he came back from the walk with dogs, having him shower immediatly because I knew long time ago that tick can be dangerous. But, again - who knows..

 

I just wish we could find something..some reason why is he not getting better, so we can fight the real enemy. This way , I feel like Don quihote..(hope You know him Fighting and fighting but I constantly have a feeling that there's a puzzle piece missing, and that he will get better when we find this piece.

 

It's very exhausting, he also has ADHD, so things can be pretty bad sometimes (most of the time)

 

And powpow - yes, it takes a lot of time and energy traying to help him from here where we are..so, again, I'm thankful for all of Your help. This forum means a lot to me.

[Hopeny]

croatianmum,

I cannot imagine trying to treat this outside of the USA. I had a horrible time, even with excellent insurance, ideal geographic location, believing doctors, both spouses in medical profession, etc..

You have my utmost respect.

 

hopeny,

I am sure that your (and others') lyme posts have helped many more than one or two kids. Honestly, I do. I just want to show another, possibly equally effective, route. Thank you for the smiley face at the end of your post~~ I hope we are all still forum friends

Yes of course, I completely agree that ALL avenues should be explored and without question not all roads lead to Lyme.

[Hopeny]

thank you all again.

 

I have contacted lyme doc. in our country and he is willing to make some lab tests but we need to wait some more time because we are 2.5 month post IVIG.

 

You should also know that my son was not diagnosed for 7 years (or more), we went from one doc. to another, spent most of our money on some wrong tests..When my son was at his very worse (even echolalia) at the age of 8; i qiut my job so I could stay home with him and help him with school and general things. Our country like many others is going to the economy crisis, no jobs here.

There is no money left right now not even to send his blood to some other country like germany or UK.

Also,

 

When my son was growing up he was sick most of the time..always something, some viruses, infections, ecc. Who knows what was going on and how many things were undiagnosed. Lyme is also possible - he grow up with 6 dogs, (my mother has them - working dogs, not pets). The dogs have lot's of ticks every time they come from a walk in the wood and my son is spending a lot of times with them. I can not rmember ever beeing beated by a tick - but, maybe we missed some minor infection..who knows. Even than I was very careful when he came back from the walk with dogs, having him shower immediatly because I knew long time ago that tick can be dangerous. But, again - who knows..

 

I just wish we could find something..some reason why is he not getting better, so we can fight the real enemy. This way , I feel like Don quihote..(hope You know him Fighting and fighting but I constantly have a feeling that there's a puzzle piece missing, and that he will get better when we find this piece.

 

It's very exhausting, he also has ADHD, so things can be pretty bad sometimes (most of the time)

 

And powpow - yes, it takes a lot of time and energy traying to help him from here where we are..so, again, I'm thankful for all of Your help. This forum means a lot to me.

We never saw a tick on my older daughter who has Lyme, or a bullseye rash. of course after what happened with my older daughter, I was crazy always checking my younger daughter and I never saw the tick that bit her either, however fortunately for us she developed a bullseye rash so we knew she had Lyme. Lymeaid4kids gives financial aid for lyme testing and treatment, please consider reaching out to them for help with testing and treatment if that's what happens. You are a brave mom and you will find the puzzle piece.