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Should we do these tests....again (some new)...Igenex


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HI all--

Posted on Lyme forum too...but thought I'd throw it in here too, for a balanced view. Thanks for any info....I am happy to hear either good or not-good thoughts ;)

 

My dd7 is being treated for pandas/pitand. Never a clear strep trigger, but never tested. Abx not helping much...many tics, some ocd, sep. anx. a bit better, etc...Long history, but we did do Igenex Western Blot back in November. Her results were:

 

IgM (Negative)

 

31 ++ (but then confirmed negative on 31 epitope test)

41 IND (was + on LabCorp Western Blot)

58 +

66 +

83-93 IND

 

IgG (Negative)

 

30 + (just tonight Dr. H @ Igenex said we should have run epitope on that...that it may have actually been band 31)

34 IND

41 ++

58 +

 

CD57 NK Test

 

NK Cells Absolute CT 243

NK Cells (%Lympho) 5.40

 

IFA B Burgdorferi G/M/A

 

1:40 INDETERMINATE

 

I have been told by my ordering pandas doc to put it to rest (the Lyme thing), but for some reason I just haven't. Maybe it's my own obsessing, or maybe it's gut. Mainstream docs say that the reason they require so many positive bands is so that it's not the cross-reacting viruses or bacteria giving a false positive. I sort of buy into that. I mean, if it's really positive, and some people are CDC positive, why aren't more bands positive on the Western Blot for people. It seems there might be some validity in that belief.

 

On the flip side, my daughter's Cam K was 168, and there has been no strep that we know of in the past year...who knows, never tested. So what is causing that to be high, dd to have many tics, etc...ocd...

 

So I called and spoke with Dr. H @ Igenex again tonight. He really wished we'd run the band 30 IgG epitope test to see if it was actually band 31. When I spoke to him a few months ago, when we first got results, he didn't think it was positive. Now, in looking at dd's results again, he says she is right on the line of so many bands that matter, that he thinks we should run some additional tests, and re-do some.

 

So I am wondering if anyone could give me some advice on if these tests should be run again, why, etc...

 

IgG and IgM Western Blots (TEst # 188 and 189)

Test # 875--Dot Blot

Test # 5095--Coinfections (Including Bartonella because we have a cat??)

 

He had first said to do Panel 6050, which has DNA and PCR's or something, but then after hearing that dd7 did antibiotic (started the week after the blood draw for Igenex) one month of Augmentin, then Dec. 15 switched to 100 mg/day Zithromax (very low dose) and still on that, that abx would affect the PCR's.

 

I can't even imagine how much this will cost......

 

Thanks for any input..

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Hi eljomom-

 

I saw you had this posted on both the pandas and lyme forum. I am answering you on the pandas forum, because that is where I think my kids fit, and where I know a little bit.

 

I completely understand your position. What I am going to tell you is my opinion only, from my experience with pandas, and now a little with an llmd. I have, sadly, become very jaded and cynical regarding what doctors/scientists actually know, and feel very uncomfortable with docs that have the answer to everything.

 

I agree with what LLM said- I wouldn't waste your money on more testing. It is VERY hard to get a "beyond a shadow of a doubt test" on lyme. There is too much controversey, too little real mainstream science, and too many opinions out there. But this is how I am looking at it:

 

My kids both have pandas, both got it basically overnight at time of strep infection, neither had any clinically significant symptoms prior to initial onset. Both have responded well to pandas treatment, HOWEVER they have at times needed more than antibiotics (have had steroids and pex) to turn off the (presumably) autoimmune mechanism. They also have a relapsing and remitting course of illness, which is how autoimmune disorders work. SO- the absence of improvement on antibiotics only, or antibiotics and oral steroids, and the fact that a child relapses DOES NOT necessarily mean there is something more at play than good 'ol pandas. (this is the current science, and what I have seen in my kids, who knows what the truth is, and what will be figured out in the next couple of decades).

 

I have the same fear of lyme, due to all of the talk on this board. I had my kids tested via Igenex. They both were IGG negative and IGM positive. To my mainstream doc- this was meaningless ( thinking IGM can be cross reactive, which by the way Dr Cunningam apparently agrees with), to my very out of the box ID doc recommended by Brian Fallon, this meant they had recent exposure, and to my llmd, it means chronic lyme. I don't think running any more tests will bring these three together, nor make me totally confident one way or another.

 

So- we decided to give lyme Tx a try, for a little while. My kids are right now healing from their second major pandas exacerbation. We started lyme treatment about a month ago. I thought it would be easier- I thought we might see improvement, or a herx- we have seen nothing. I didn't realize I would be so stressed about all this medication. You think long term abx for pandas is bad, what about 2-3 abx at a time, into a teeny tiny 7 yr old (who by the way hates medicine, doesn't understand why she has to take it, and mommy is not too good at explaining, because I don't know what the truth is).

 

In the end, we will continue lyme treatment for a while. But- I really don't think it is the answer for our family. I don't think it was the cause of pandas, if anything, maybe lyme was responsible for the recent episode in one daughter.

 

So I guess what I am saying is- there will be no easy answers. If you feel lyme could be at play- try treatment. Since we started our journey, I have felt we needed to just follow the treatment that works. That will be your answer.....

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Hi eljomom,

 

I once went to a conference and the speaker said, "Ok, I now want everyone in the room to hop on one foot." Everyone in the whole room hopped on one foot but me. I didn't do it because it didn't make sense to me. That experience was very good practice for this forum. When you have a room full of people whispering Lyme, it is very difficult to not to want to buy into it. Especially if it can save a life. For many a Lyme diagnosis will save lives. But it won't save my son's life. He has an autoimmune disease. It doesn't matter how much I want Lyme disease to fit it just doesn't. A Lyme disease diagnosis offers more hope. Not only could my child get treated for pandas but also lyme - that is double hope. Two teams filling my child with miraculous and life giving antibiotics. Something in this combination will surely work...

 

However, I stopped hopping on one foot. I am standing still. My son has an autoimmune disease and I am very grateful that I stayed on the path my gut told me was right all along. Instead of Lyme treatment, he is getting autoimmune encephalitis(pandas) treatment. He is getting multiple high dose ivig's and he is healing. With each one he is healing faster.

 

If I would have changed course, I could have ruined my son's chance for recovery. Steroids. To think I would have given those life giving drugs up. High dose ivig's - pretty much gone. I shudder to think if I made a different choice. I just sat back and thought about it, looked at the evidence for my kids, and made my decision.

 

I don't come on this forum like I use to. I use to come on this forum for support and to share my questions. However, now the forum is stressful for me. I see well meaning good hearted people sharing Lyme stories on the pandas forum. I see newcomer getting confusing and conflicting advice. I don't understand why the pandas forum can't be just about pandas. If people are smart enough to find this forum, they are smart enough to notice the Lyme disease tab and click on it if they have questions. All of the Lyme responses to people's pandas questions is quite frankly, annoying. It is making everyone hop on one foot. Panic,panic, panic. Lyme deserves to be investigated and discussed on their own forum.

 

I feel your pain eljomom. I have been there. I have talked to you before via pm. I know who your pandas doctor is. Trust her.

 

Ok. Back into hiding for me...

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Hi eljomom,

 

I once went to a conference and the speaker said, "Ok, I now want everyone in the room to hop on one foot." Everyone in the whole room hopped on one foot but me. I didn't do it because it didn't make sense to me. That experience was very good practice for this forum. When you have a room full of people whispering Lyme, it is very difficult to not to want to buy into it. Especially if it can save a life. For many a Lyme diagnosis will save lives. But it won't save my son's life. He has an autoimmune disease. It doesn't matter how much I want Lyme disease to fit it just doesn't. A Lyme disease diagnosis offers more hope. Not only could my child get treated for pandas but also lyme - that is double hope. Two teams filling my child with miraculous and life giving antibiotics. Something in this combination will surely work...

 

However, I stopped hopping on one foot. I am standing still. My son has an autoimmune disease and I am very grateful that I stayed on the path my gut told me was right all along. Instead of Lyme treatment, he is getting autoimmune encephalitis(pandas) treatment. He is getting multiple high dose ivig's and he is healing. With each one he is healing faster.

 

If I would have changed course, I could have ruined my son's chance for recovery. Steroids. To think I would have given those life giving drugs up. High dose ivig's - pretty much gone. I shudder to think if I made a different choice. I just sat back and thought about it, looked at the evidence for my kids, and made my decision.

 

I don't come on this forum like I use to. I use to come on this forum for support and to share my questions. However, now the forum is stressful for me. I see well meaning good hearted people sharing Lyme stories on the pandas forum. I see newcomer getting confusing and conflicting advice. I don't understand why the pandas forum can't be just about pandas. If people are smart enough to find this forum, they are smart enough to notice the Lyme disease tab and click on it if they have questions. All of the Lyme responses to people's pandas questions is quite frankly, annoying. It is making everyone hop on one foot. Panic,panic, panic. Lyme deserves to be investigated and discussed on their own forum.

 

I feel your pain eljomom. I have been there. I have talked to you before via pm. I know who your pandas doctor is. Trust her.

 

Ok. Back into hiding for me...

 

 

 

Bumping Philly's excellent post.

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My daughters have pandas. They also have confirmed lyme. Our lyme treatment is all mixed up in our pandas treatment and it does get very confusing. Sometimes I don't know what is pandas or what is lyme. I often feel unwelcome and alienated on the pandas forum now. I resisted posting this as I don't like to get involved in the drama either but I wanted to give my point of view. I'll stay on the lyme board now I guess until it becomes clear that the lyme is gone and see if we will still be dealing with pandas. It makes me so sad. I spent so much time and learning here with everyone.

 

Susan

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I don't understand why, when someone posts their views, opinions and experiences that don't flow with Lyme......why is it considered "drama"?

 

I feel the same way as Susan, and also hesitated replying. I don't want to stir the pot.

But to answer your question, I think when someone says your posts about lyme are "annoying" and suggests that if you opt to test for lyme, you are just succumbing to peer pressure and not thinking for yourself, the tone comes across as unwelcoming and well, disrespectful. You and I have had this conversation before and I don't want to have it again. But this is how it makes me feel. The "drama" for me doesn't come from people disagreeing or stating their points of views. I think that's very healthy and important. It's in the particular words and tones that get used. Just my feelings on the matter.

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Wow, this was NOT what I intended with that question, although I knew in my gut, there might be some disagreeing opinions. I respect them ALL. I appreciate everyone's input. Philly PA and Susan....I am enlightened by both of your posts. Honestly. I do agree with PhillyPA that at some point, I feel Lyme was a diagnosis of hope....I do NOT believe that all LLMD's are "well-rounded" and will explore and rule out other things. I DO believe that MANY LLMD's are "tunnel-vision" Lyme. BUT,BUT, BUT that is my opinion only. I could be totally wrong. And NONE of us are MD's as far as I know, so in a nutshell, this whole forum is OPINION....some more educated than others. I don't think there is any disrespect intended by anyone here. We are all on a desperate journey to heal our kids. I do also agree with Philly PA that there was some advice given on this board to pandas parents that have sent them into a Lyme tailspin. Some people here have changed their "cause du jour" with regards to what their child "really" has. Some are getting better, and some clearly are not. But we are ALL on a journey. I think it's important when people read this forum to understand that we are all parents and not doctors (while likely more educated than some doctors!), and to really be careful when offering advice and treatment. I think it would be great if this forum was more of a "this is what we've tried/are trying/are thinking about trying...and why...and if it's proven to be helpful." NONE of our kids fit a one-size-fits-all mold. I am guilty of jumping on anything I see posted here too at times. But it's important to know what our kids symptoms are, how long, there's just so much more going into it.

 

Susan, I am sorry you feel like you need to leave the forum....that is truly sad and a loss. You have a pandas child who also happens to have Lyme. So maybe both boards would be like home for you. I don't think Philly PA intended to insult or cause drama here....I greatly appreciate her level-headed advice. She neither told me "do" or "do not" but just shared her experience. We just need to all not take stuff so personally. Noone is saying "no lyme/pandas" people on the pandas forum.

 

Not to sound sharp here, but I have enough drama with an almost 14 year old daughter....come on people....get over it!!! Sorry, PMS too....but really, let's just value each other's opinions, take what we want, and leave what we don't, and be careful to not be definitive in any advice given here...just suggestive. I don't really know what I'm saying anymore. Just tired of people getting their feathers ruffled over wonderful dialogue.....

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Exactly,Eljomom!

 

What pot is being stirred? Good conversations and differing opinions? Sounds like a good pot to be stirred to me. It has potential to save a child!

 

 

LLM,

 

"You and I have had this conversation before and I don't want to have it again"....don't remember it and I am not keeping track......but, responding to a specific person's post, mine, invites response and conversation...right?

 

By the way.....that post was not mine that you were referring to...it was Philly's...however, I bumped it because I feel it gave great insight and people should read it very carefully.

Edited by P.Mom
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There is a doctor at the University of Pennsylvania named Joseph Dalmau. He recently co-wrote the article The Emerging Link between Autoimmune Disorders and Neuropsychiatric Disease. It was published in the winter 2011 edition of The Journal of Neuropsychiatry and Clinical Neurosciences. If I was able to create a link I would post it here but I can't. This stuff that he is researching is very important to PANDAS (in my opinion). He discusses what is called Anti-NMDA receptor encephalitis. What he basically talks about in his articles (there are several) is that he found that when people have cancer/tumors that get crazy. He has done research and has found that this type of encephalitis (which is called auto-immune encephalitis) is occurring in children after an infection, not just cancer. If after a person experiences personality change after an infection and they get a spinal tap done to test for these specific antibodies they can get an accurate diagnosis and the help that they need. I spoke with Dr. Dalmau last week. I told him that my child was a CHOP in 2007 and asked if he was tested for these antibodies. He said, "NO". The test did not exist in 2007. I asked if my son were to be tested now, would these antibodies be there. He said, "most likely, no." He said that over time these antibodies disappear or become much harder to find. It is important that this test be done soon after the personality change take place. Treatment suggested is aggressive and the longer one has it the more aggressive one has to be. Steroids, multiple high dose ivig (he recommends 2gr/kg) need to be administered. Healing,with treatment, can take a long long time. As much as 5 years. BUT- healing does occur.

 

So, I believe that this new science and research is very very important. However, it is 100% an auto-immune disease. I DO believe that Lyme disease is real. I also believe that there are a lot of false positives. I just want parents to be very very sure what path they are on in treating their children is the correct one. Because if you decide to treat for Lyme disease with flimsy test results, you could be avoiding the very treatments that could save your child. Now, I don't want everyone to "hop on one foot" after reading what I have just wrote. I am sharing information that I think is very important. If your child has an auto-immune disorder you WILL need steroids. IVIG may be very very necessary, and more than one of them.

 

As far as I know, University of Pennsylvania is the only place that does this test. Google Dr. Dalmau. He has several published articles.

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There is a doctor at the University of Pennsylvania named Joseph Dalmau. He recently co-wrote the article The Emerging Link between Autoimmune Disorders and Neuropsychiatric Disease. It was published in the winter 2011 edition of The Journal of Neuropsychiatry and Clinical Neurosciences. If I was able to create a link I would post it here but I can't. This stuff that he is researching is very important to PANDAS (in my opinion). He discusses what is called Anti-NMDA receptor encephalitis. What he basically talks about in his articles (there are several) is that he found that when people have cancer/tumors that get crazy. He has done research and has found that this type of encephalitis (which is called auto-immune encephalitis) is occurring in children after an infection, not just cancer. If after a person experiences personality change after an infection and they get a spinal tap done to test for these specific antibodies they can get an accurate diagnosis and the help that they need. I spoke with Dr. Dalmau last week. I told him that my child was a CHOP in 2007 and asked if he was tested for these antibodies. He said, "NO". The test did not exist in 2007. I asked if my son were to be tested now, would these antibodies be there. He said, "most likely, no." He said that over time these antibodies disappear or become much harder to find. It is important that this test be done soon after the personality change take place. Treatment suggested is aggressive and the longer one has it the more aggressive one has to be. Steroids, multiple high dose ivig (he recommends 2gr/kg) need to be administered. Healing,with treatment, can take a long long time. As much as 5 years. BUT- healing does occur.

 

So, I believe that this new science and research is very very important. However, it is 100% an auto-immune disease. I DO believe that Lyme disease is real. I also believe that there are a lot of false positives. I just want parents to be very very sure what path they are on in treating their children is the correct one. Because if you decide to treat for Lyme disease with flimsy test results, you could be avoiding the very treatments that could save your child. Now, I don't want everyone to "hop on one foot" after reading what I have just wrote. I am sharing information that I think is very important. If your child has an auto-immune disorder you WILL need steroids. IVIG may be very very necessary, and more than one of them.

 

As far as I know, University of Pennsylvania is the only place that does this test. Google Dr. Dalmau. He has several published articles.

Is Dr. Dalmau helping you receive IVIG? Does he administer it? If no, is he recommending a doctor who will administer it?

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I just want parents to be very very sure what path they are on in treating their children is the correct one.

This is the big problem with all of this...there is such a lack of certainty about what is really causing problems and what treatment is/will be effective. Everything is so "experimental." And we get so many different opinions from doctors as well. I'm at a point here, that I really don't know what to do. My daughter is slowly improving on Clyndamycin, which she finishes tomorrow. Saturday we'll take her for a follow up strep test. But, then what? She gets monthly IVIG, was on zith and keflex and still had a positive strep test. So what do we do? Should we even do abx prophylaxis? It clearly did not prevent a really bad episode. My gut says there is something more than strep here- but what? And if its viral, then what?

 

My problem with lyme has always been that the (expensive) tests don't really seem to tell you very much. If they come back neg. then it doesn't mean you are really neg. If they come back positive, could be that its a cross reaction with something else.

My kid is sick and NOBODY seems to have any definite answers for us.

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Peglem....right there with you. Wish these docs would communicate more, instead of trying to be the one-man army. NONE of them (the top pandas docs) seem to be healing everyone they see, and I mean no disrespect by saying that. But if they all put their heads together (like in the summer, but NOT just for naming and "does it really exist" purposes) and look at all their patients, what has worked for what type kid, etc....maybe we could get somewhere....

 

PhillyPA---does he say steriods WITH IVIG or try them first? Also, burst or taper?? This is the real issue here for us, though, is that dd7 isn't "bad enough" for IVIG yet, according to doc. So....we wait for it to get bad enough, which means longer time goes by, thus harder to treat, etc......does this doc believe in treating milder cases in order to treat early enough?? Thanks for sharing that info.

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Philamom,

 

No, he is not helping with IVIG. I go to my pandas doctor. The treatment for pandas and anti-nmda receptor encephalitis is basically the same except there are no antibiotics given daily like in pandas. Just IVIG, PEX, steroids and there are two other drugs that have worked for some people - cyclophosphamide and rituximab which I believe are cancer drugs. However, I have to double check that. Perhaps those drugs were only given to the cancer patients.

 

You touch on a reason why this research is important. If you get this diagnosis, no one will have a problem getting ivig or pex or anything else related approved by insurance. It is 100% insurable.

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