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Frustrated, confused, angry & running out of ideas


NMom

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Quick background:

 

My son (7) was diagnosed with PANDAS in May 2010. He had a confirmed strep culture just before the onset of symptoms. He responded very well to antibiotics and we were told 'he'll never have another episode as bad as that again' by our PANDAS doctor (who I'm quickly learning does not have any sense about what is said in front of my child!!) Fast forward to June 2011 and here we go again. He's been on antibiotics all year and had a great school year but things started ramping up around May again and by the first week of June we were in a downward spiral (had repeated strep exposure). Saw the same PANDAS dr. who asked my son (my seven year old son!) if he was ready to go to the hospital and get rid of this for good. So we prepared to do PEX but at the last minute I asked if we should test for Lyme and co-infections or try steriods. I was told that steriods wouldn't be helpful now since we were coming out of the exacerbation. But the other tests were ordered and I got the call today. As our PANDAS doctor put it..'he's VERY positive for a recent LYME infection'. Igenix said the blood was too old to test for co-infections so who knows what else would have been positive. Basically he tested IgM positive for bands 41, 58, 89-93.

 

So PANDAS doc has now decided to do a 30-day steriod burst. In my shock I neglected to ask enough questions to understand why we are trying steriods now. All I got from the doctor was that we need to see if there is an immune response..but why? If he gets better on steriods, does that indicate PANDAS? If he gets worse then...does that indicate Lyme? We already know there was a strep exposure before both episodes. And everything I read about the Lyme testing indicates that it is cross reactive with other infections and not entirely accurate.

 

A very wise friend on this forum told me to really consider what I would do with a positive Lyme result because it can take you down a rabbit hole. At the time I thought I'd just put it in my back pocket if it came back positive. I really believe this is strep related. But it know threatens our ability to do PEX. Maybe that's ok. I know a lot of people say they've done PEX and results didn't last because of undiagnosed Lyme. But if you'd know about the Lyme prior to doing PEX...what would you do then?

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I'm old, but I'm not sure I'm very wise...

 

If you have a positive Lyme, I would not do the steriods. This is very contradicted many places-

before we found Lyme, we did steriod for only 4 days (a type of burst, if you will) and it made things worse, certainly no improvement, and I was scared to shut down her immune system for longer than 4 days-

All my reading on Lyme says whatever you do, don't give steroids.

But, you may find folks on here that have had success with steriods and lyme? I don't know.

 

On one hand, I do regret our IVIG's not knowing about Lyme, since we had to pay cash, about $10,000 total for both when all said and done, and the results have not lasted, because come to find out we have underlying infections.

The 2nd IVIG did give us the best 2-3 weeks we've ever seen, but then it all started to fade out. The first one was like a big herx.

I'm not sure about Pex, it was never an option for us.

With daily Azithromycin we have been on, we have not returned to a completely normal baseline. I saw improvement, and when we go off things seem to get worse, but I think now it was just holding some of the bacteria back, or having it go into cyst form.

 

Sending you good thoughts--- me, I am sort of relieved to find the lyme and co-infections---finally, finally, I know what the heck is going on, and found someone (LLMD) who knows a way out. Of course, I am also incredibly depressed about it.

I have also read that the IgM doesn't necessarily mean it is a 'new' infection- my dd6 had positive IgM's and we have come to find out I have Lyme, and it came from me, so she has been carrying it her lifetime. This is what it looks like with my recent testing and symptoms.

 

Just some thoughts...

Edited by S & S
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Thanks S&S for your response. I've read the same thing about steriods and Lyme which is why I'm so concerned...and I don't understand why our PANDAS doc is prescribing them unless she too doesn't understand how they might affect someone with Lyme??? My son is fully functional right now - in school, etc. but he struggles daily to keep the OCD from taking over. I hate that and want to help him but am so afraid to do something that will send him on another downward spiral.

 

I'd be very interested to hear from anyone that has tested positive for Lyme and used steriods - what are we trying to figure out?

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I do not know how to answer your questions- I am sure someone smarter than me can do that!

IF (big IF) the steroids take away everything (or most of it) than I think the symptoms you are left with are auto-immune and maybe NOT symptoms of an infection. Does that make sense?

I can't answer the lyme question with an sense of intelligence. You and I have talked before (and I will be happy to share anymore if I can help!!) & I will be honest-- I really wonder if this IGENEX stuff is a worthy of anything.

I had a clearly positive lyme test (Labcorp)for one child. The second (who was clearly strep related) I chose NOT to do any lyme testing at all. It is an expensive, time consuming & in my case- not entirely helpful-- rabbit trail.

Steroids helped my kids and pex did, too. The one who we chose not to test for lyme is 8 month post pex/ 4 months post IVIG and doing great. I am glad we did not test-- who knows what we would be doing now.

Of course, I may eat my words....

If your son had, for example, poison ivy or an asthma attack and needed steroids tomorrow-- would you do it? Would you test for lyme first? I am not saying you should not test, unfortunately -- but this was the litmus test I used when deciding to go ahead with steroids for my non-lyme tested child.

The best we can do right now, is only the best we could do it. This is literally like searching for a needle in a haystack. There could be countless allergens, irritants, wireless electrical signals, viruses, bacteria and who knows what else that might cause PANDAS.

I wish I was more helpful.

Praying for you--

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We were posting at the same time:)

My oldest daughter was on steroids (ordered by her LLMD) It was a small dose, but it was ordered after a very thorough and exhaustive lyme treatment was not kicking the psychiatric symptoms. It was too small a dose to be helpful, really, but it was enough for the LLMD to see that it would not be detrimental. A few months later, my daughter took the PANDAS doc dose and was immensely better by day 10. It did not "hold" but it "worked" and NO, ZERO, NADA physical symptoms of lyme returned during or after that big PANDAS steroid dose!

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I'm sorry for your troubles with your PANDAS doc. Maybe you could call and ask her for her reasoning behind doing steroids?

 

For us, Lyme/coinfection treatment has been anything but a "rabbit hole" - it has given us our lives back. And honestly, it stings a little when people refer to it this way. We tried IVIG twice and this did not get our son well, but I would never refer to it as a rabbit hole, as I know it helps some.

 

I think each of these kids is different and we all have to find our own way to healing them. I think the most important things are to remain open-minded and never give up.

 

As for steroids, we tried two 5-day bursts 8 months apart for PANDAS with varying degrees of success - both temporary. We have also had to do 5 - 6 day steroid bursts for two asthma attacks - so we did them Sept. '09 (PANDAS), March '10 (asthma), May '10 (PANDAS relapse 5 months after IVIG), and April '11 (asthma). I don't know what impact these may have had on our Lyme treatment progress, but our son IS much better than a year ago when we started with our LLMD. I will say our original PANDAS doc said the steroid burst success proved it was PANDAS, but obviously it didn't prove our son didn't have Lyme. I will also mention that the pediatrician and others involved in asthma treatment were adamant that we try to minimize oral steroid use because the doses are so high. So if there's not a really compelling reason to use them (especially for 30 days!), I would hold off.

 

I also want to say that I think Igenex gets a bad rap in some quarters. There seems to be a belief that they return nothing but positive test results, but everyone in our family has tested negative. I was clinically diagnosed years ago and never believed it, so didn't treat. I have rethought this decision based on my son's situation, my own declining health, and other recent testing such as CD57. My husband was bitten by a tick, but is not sick. My son was diagnosed based on positive Bartonella test and clinical symptoms. So we got 3 negative tests back from Igenex -one true, one definitely false and one most likely false.

 

I wish you the best with your decisions. With such a complicated illness, our best is all any of us can do.

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For those who say that the PEX results didn't last- there's no way of knowing that there wasn't another "trigger" that perhaps wasn't seen which sent things spiraling out of control.

 

 

EXCELLENT POINT!!! & frankly, if, Heaven Forbid, we have a relapse (or a new trigger causing the same symptoms to recur) I will be grateful for the many months of peace my daughter has had.

Edited by PowPow
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NMom: I thought my son, almost age 5, was a straight case of Strep:PANDAS. He was dx at age 2.5 and had a severe acute episode almost 1 year ago last Sept., after a T&A with Strep infected tonsils. He was put on Augmentin from 9/10 - 1/11 and when he plateaued, switched to Cefdinir from 1/11 - 7/11. We went to see Dr. B in CT in late July. He brought up Lyme and although DS was tested x 2 with a regular lab over the past year, lo and behold, Igenex found both Lyme and Bartonella. Prior to the testing, because my son had Myco walking pneumonia last Oct. 2010 and his titers were still high and he was not fully recovered, Dr. B. put him on a combo of Augmentin 2 x D and Azith 1 x D. For us, this has been a magic bullet. My son is a completely normal, healthy, rowdy, fun, typical kid. His recovery has been miraculous. I know that these "recoveries" don't always last, but this feels very different - he suddenly started drawing with talent, has begun early reading and writing, cannot get enough of it in fact and is right on both academically and socially according to his preschool teachers. The major test will be when we taper off, but this combo of abx has changed out lives. Since you are looking at Lyme, I thought I would share with you, although I recognize that our kids and our situations are different. My biggest recommendation would be to take a look at trying to get to Dr. B in CT. It's a long way for us, we are in NC, but my God, it has been worth its weight in gold!

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I was administered steroids while pregnant with twins and unknowingly had Lyme Disease at the time. I ended up having daily epileptic seizures and extremely high blood pressure. The Dr.s had no idea what was wrong me. The steroid shots were used to calm a full body rash that they believed to be PUPPS. My twins ended up needing to be delivered in hopes 'my bad state' would resolve. Both children now have congenital Lyme Disease and are recovering. They are 4 years of age.

 

My older son who is 7 1/2 also has congenital Lyme and was administered a five day steroid burst two years ago with positive results that did not last. He too had a sudden on-set of PANDAS like symptoms and treated for PANDAS one year and had 3 hdIVIGs. The strep titers resolved during that timeframe. He has not had a hdIVIG treatment in 20 months, he remains fairly close to full recovery minus herx response with Lyme treatment.

 

Lyme treatment has definitely not been a rabbit hole but life changing for our entire family.

 

I too have heard of many children that were thought to have PANDAS but truly have chronic infection responding well to a month long steroid bursts. I do not think it can rule in or out the chronic infection verses auto-immune aspect.

 

I recommend at least speaking with Dr. versed in treating Lyme prior to administering steroids so you can make a well informed decision on the benefits or potential complications. All our children were negative for Lyme Disease via Igenex antibody testing but unraveled Lyme via other means of testing i.e. DNA match.

 

Here is a good video, only 7 minutes long and explains how the inflammation process occurs with Lyme Disease.

 

Edited by SF Mom
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"But if you'd know about the Lyme prior to doing PEX...what would you do then? "

 

My son had PEX before he tested positive for Lyme/bartonella. The PEX had almost zero effect positive or negative.

 

It is hard to say exactly what I would have done as we were desperate at the time, but, I believe we would have waited. I do not know which PANDAS doctor you are seeing but beware that some of the PANDAS doctors only treat PANDAS and have no clue what to do when Lyme enters the picture. Perhaps that is a question for your doctor - how do they plan to treat the Lyme and why would PEX be beneficial at this time? Bartonella is often blamed for OCD and often is found with Lyme.

 

My son is also still considered PANDAS though I no longer believe strep is playing too much of a role any more.

 

bill

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I'm sorry for your troubles with your PANDAS doc. Maybe you could call and ask her for her reasoning behind doing steroids?

 

For us, Lyme/coinfection treatment has been anything but a "rabbit hole" - it has given us our lives back. And honestly, it stings a little when people refer to it this way. We tried IVIG twice and this did not get our son well, but I would never refer to it as a rabbit hole, as I know it helps some.

 

I think each of these kids is different and we all have to find our own way to healing them. I think the most important things are to remain open-minded and never give up.

 

I wish you the best with your decisions. With such a complicated illness, our best is all any of us can do.

 

My sentiments exactly. We have a similar history/experience, except we did 1 pex, 1 IVIG, 2 steroid tapers - with no lasting remission. Treating lyme, bartonella and the following the trail is has taken us on has been life changing - for the better. Not an easy trail, not a straight one. Not one I readily embraced. And certainly not the trail that every sick kid should follow. But the key is treating the correct infection with the correct treatment for your child. Not being married to one label over another, one treatment over another.

 

It is finding a needle in the haystack. It is exhausting and expensive and wickedly confusing. But the proof is in the pudding. When you finally find the right label and treatment, you have a good shot at getting not just your sick kid back, but your whole family.

 

You're probably cringing a little because many of the responses are from lyme families and not the Pandas families you were looking to for support. For your immediate steroid decision, I personally would not do it again, but the two times we did it did give us respite and it probably did no lasting harm, other than to delay treatment. But I can't imagine what your doctor is thinking it will prove or why she would want to do it.

 

Best of luck with your decisions.

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In addition - prior to finding out DS had anything other than Strep:PANDAS, the specialist we were seeing was extremely conservative and resisitant to the idea of steroid taper because little guys (I am thinking age 7 fits into this) can have severe psychiotic symptoms as a result. I don't want to upset you, but it seems like it would be a really good idea to slow down a little and seek out a 2nd opinion from a specialist.

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mama2lex....i am curious about Bartonella...especially given my dd's symptoms. Did you have the bartonella tested through Igenex too?

 

 

I'm sorry for your troubles with your PANDAS doc. Maybe you could call and ask her for her reasoning behind doing steroids?

 

For us, Lyme/coinfection treatment has been anything but a "rabbit hole" - it has given us our lives back. And honestly, it stings a little when people refer to it this way. We tried IVIG twice and this did not get our son well, but I would never refer to it as a rabbit hole, as I know it helps some.

 

I think each of these kids is different and we all have to find our own way to healing them. I think the most important things are to remain open-minded and never give up.

 

As for steroids, we tried two 5-day bursts 8 months apart for PANDAS with varying degrees of success - both temporary. We have also had to do 5 - 6 day steroid bursts for two asthma attacks - so we did them Sept. '09 (PANDAS), March '10 (asthma), May '10 (PANDAS relapse 5 months after IVIG), and April '11 (asthma). I don't know what impact these may have had on our Lyme treatment progress, but our son IS much better than a year ago when we started with our LLMD. I will say our original PANDAS doc said the steroid burst success proved it was PANDAS, but obviously it didn't prove our son didn't have Lyme. I will also mention that the pediatrician and others involved in asthma treatment were adamant that we try to minimize oral steroid use because the doses are so high. So if there's not a really compelling reason to use them (especially for 30 days!), I would hold off.

 

I also want to say that I think Igenex gets a bad rap in some quarters. There seems to be a belief that they return nothing but positive test results, but everyone in our family has tested negative. I was clinically diagnosed years ago and never believed it, so didn't treat. I have rethought this decision based on my son's situation, my own declining health, and other recent testing such as CD57. My husband was bitten by a tick, but is not sick. My son was diagnosed based on positive Bartonella test and clinical symptoms. So we got 3 negative tests back from Igenex -one true, one definitely false and one most likely false.

 

I wish you the best with your decisions. With such a complicated illness, our best is all any of us can do.

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