Would love some insight....

[ziva]

First, I have to say sorry if this is all rambling on. I am trying to get what's in my brain into the computer, while my kids are all going a little crazy and playing in the pool

 

I have two PANDAS kids. Both diagnosed with initial onset of strep (positive swabs/cultures) about 5 months ago.

 

DD6's symptoms started slowly .. separation anxiety/ocd/then eventually rages

When she is on abx. she gets better within a few days. Once she's off her symptoms slowly ramp up again.

 

DS7's symptoms started quick. Within 12hrs of feeling "streppy" (vomiting,sore thr. etc) he has hallucinations, hears voices. Once starting abx they subside w/in 12-24hrs. Then he hears voices, has "the feeling", bedwetting,moody, and is sore. It starts as everyday, then slowly fades away over a course of a 3-4 weeks. The only thing that seems to stick is bedwetting (every few nights), and extreme soreness at times.

 

He has had the soreness for at least a year, sometimes so bad that he cant walk.

He has only had all of the other PANDAS symptoms since Jan.2011.

I have always thought that it was something other than growing pains.....which is what our ped. always said it was.

 

He did have a tick on him, and it was pulled off....but, it was on him overnight. And pretty attatched.

 

We have seen Dr.K in chicago for PANDAS, who said no lyme....no need to even check w/out the rash.

We have spoken to Dr. T in NJ, he ran a bunch of tests, all neg. The Western Blot was one of them...all negative.

 

Dr. K has recommended IVIG asap for both. Says summer is the best time to do it.

I just don't know what to do. I would really hate to do IVIG and then find out lyme later.

Does any of it sound lyme-ish to you?

 

I just feel like I need to rule it out, but don't know exactly how to do it. Or, when to just let it go.

 

I have the Igenex kit (for my DS7), and plans to send it to Dr. P in Elgin/Iowa (on a side note, if anyone has any info on him, or other IL LLMD's please PM me). But my husband is not thinking this route at all. And it's so much money for the consult, and the test. It's driving us crazy that all of the doc's we want to see don't take insurance.

 

I am also considering going to Denver and seeing Dr. N. Again, my husband is thinking we are already spending so much, he's not sure what he can do for us, that someone here can't. But, I can't seem to find an ART practitioner in Il, and the Klinghardt academy told me they aren't doing referrals right now.

 

On one hand I am thinking lets just do this...the IVIG...and try to nip it early on and see how it goes.

On the other, I am thinking of slowing it down, and trying some other tests, and possibly homeopothy (which my husband thinks is rediculous).

 

I have no idea which way to go with all of this. I know it's expensive now, but may save us so much time and energy in the future.

 

I would LOVE to hear your thoughts, and advice.

What is worth doing, worth the travel, time, and money.

 

I feel like I am drowning in all of this, and my kids seem to be getting worse.

Thanks!

[MichaelTampa]

The things that sound a little different from PANDAS to me are:

- for dd, the slow ramp up of symptoms (more like growing of bartonella coinfection than PANDAS flare)

- for ds, soreness (do you mean muscle pain, which is a lyme symptom?)

 

Dr.K. is incorrect about the rash aspect of things. I don't know what "negative test result" means, as some people have multiple lyme-specific bands show positive and then the doctor calls the test result "negative". What lab, what were all the band results for igg and igm? While the PANDAS docs seem very well intentioned, they simply are not knowledgeable enough about lyme to be giving out any advice in that area.

 

In my opinion, anyone with a known tick bite and then PANDAS symptoms that start at any point after that should be assumed to have lyme disease until proven otherwise (where a negative lyme blood test is NOT considered proof).

 

IVIG is not really contraindicated in lyme, it wouldn't be a horrible thing to do for lyme, it would probably help, although perhaps the benefits would not be lasting if comprehensive lyme treatment is needed and not given. For a lyme patient, IVIG is likely to be more helpful as a supplement to treatment rather than the only treatment, and perhaps is money not spent as efficiently as possible if done alone or too early in treatment, but again, not horrible. Of course, IVIG does introduce the possibility of getting babesia or other infection, and it will make any subsequent lyme testing more questionable than it already is.

 

Regarding your husband and the costs, below is a quote from the link below:

 

"According to a 1998 study (adjust for inflation), treatment for early Lyme disease averaged $161 per patient. A patient with longstanding Lyme disease spends an average of $61,243 per year."

 

While you are, of course, way too late for the $161 per patient, all I can say is, there is a lot of money at stake, the cost of delay is real.

 

http://sites.google.com/site/getitrighttreatthebite/ticks/treat-the-bite

[mama2alex]

Hi Ziva,

 

I'm really sorry you are dealing with all this - it is overwhelming, I know. The soreness is a real red flag for Lyme, so that warrants some follow-up for sure. The fact that they respond well to abx indicates there is a bacterial infection, but you don't know exactly what it is - it may be just strep or there may be other bacterias in play. I think running the Igenex test on your ds7 makes a lot of sense. Did Dr. T in NJ give you a copy of the Western Blot results? You might want to request that and post the results here for feedback. I believe he uses the CDC criteria, so you can have several bands positive and they deem it a negative. If you're doing Igenex, I would also do the testing for co-infections, especially Bartonella, which has very similar symptoms to PANDAS. And I do believe its worth the time, money and effort of travel to see an LLMD because they can look at symptoms as well as test results, and will run tests on other infections that could be contributing to the psychiatric symptoms. And if I were you I would wait to do IVIG until you've figured out whether they have Lyme. Lyme is a clinical diagnosis, so I think your money would be best spent on the LLMD right now. If you find out that neither of your kids have Lyme, then IVIG might make sense.

[lyme_mom]

The things that sound a little different from PANDAS to me are:

- for dd, the slow ramp up of symptoms (more like growing of bartonella coinfection than PANDAS flare)

- for ds, soreness (do you mean muscle pain, which is a lyme symptom?)

 

Dr.K. is incorrect about the rash aspect of things. I don't know what "negative test result" means, as some people have multiple lyme-specific bands show positive and then the doctor calls the test result "negative". What lab, what were all the band results for igg and igm? While the PANDAS docs seem very well intentioned, they simply are not knowledgeable enough about lyme to be giving out any advice in that area.

 

In my opinion, anyone with a known tick bite and then PANDAS symptoms that start at any point after that should be assumed to have lyme disease until proven otherwise (where a negative lyme blood test is NOT considered proof).

 

IVIG is not really contraindicated in lyme, it wouldn't be a horrible thing to do for lyme, it would probably help, although perhaps the benefits would not be lasting if comprehensive lyme treatment is needed and not given. For a lyme patient, IVIG is likely to be more helpful as a supplement to treatment rather than the only treatment, and perhaps is money not spent as efficiently as possible if done alone or too early in treatment, but again, not horrible. Of course, IVIG does introduce the possibility of getting babesia or other infection, and it will make any subsequent lyme testing more questionable than it already is.

 

Regarding your husband and the costs, below is a quote from the link below:

 

"According to a 1998 study (adjust for inflation), treatment for early Lyme disease averaged $161 per patient. A patient with longstanding Lyme disease spends an average of $61,243 per year."

 

While you are, of course, way too late for the $161 per patient, all I can say is, there is a lot of money at stake, the cost of delay is real.

 

http://sites.google.com/site/getitrighttreatthebite/ticks/treat-the-bite

 

I agree with MIchael. Neither one of those doctors is qualified to rule out lyme and the one who said that without a rash it is not worth testing is totally wrong. I would make sure it is not lyme first b/c you may not need ivig and there are risks that go along with ivig. From what I understand it is a pooled blood product and they do not test it for lyme or other tbds which are so common in the general population. I would worry about any blood product being introduced to my child b/c we all know how hard it is to test for these infections. The muscle testing option is a good one, especially if it is with a llmd like dr n. THere is also no harm in a trial lyme treatment to see if it has any effect. Of course you can't expect either of the doctors you mentioned to know how to treat lyme properly or to know what coinfections are likely involved. If this is lyme you don't want to take a long time to figure that out b/c the sooner you treat the better the outcome. Good luck!

[LNN]

I'll second (or third) what the other members have said. But then again, you're asking your question on a lyme forum. So consider our biases...

 

The fact that your child relapses when off of abx is a clue that something has not yet been reigned in. Pandas and neuro-lyme and bartonella look very very similar. Im my son's case, he had a tick bite that we didn't pay attention to and then sudden onset psych issues a few weeks later that remitted, and then 3 months later, strep and a full blown nightmare. So we always assumed it was "just" Pandas (as if "just" Pandas were like having "just" an off day - HA!).

 

We did the T&A, we did pex, we did 18 mos. of abx, we did CBT and ERP, we finally begrudglingly did IVIG (which is great for some but I was always reluctant). Nothing every got DS well for more than 2 months at a time. When we did IVIG, we had a horrible post-recovery. This is not the norm, even for Pandas kids who have lyme and do IVIG, but I wanted to let you know it's a possibility. $20,000 later and 2+ yrs later, when DS still wasn't following the script the way a Pandas poster-child was supposed to, we found lyme thru Igenex (had a completely negative CDC western blot and Elisa 6 months prior to Igenex testing).

 

To be honest, we have gotten much closer to good health on a lyme protocol, but it's been bumpy and we have a long way to go. There have been months every bit as awful as our bad Pandas months. There've been months I finally saw the son I had lost. It isn't necessarily a matter of getting a diagnosis and "the" correct treatment. Lyme protocols vary widely and have varying degrees of success - very individual. Very costly. And you change your own plan every few moths due to the nature of the bacteria. So no matter which path you chose, there are both health and financial considerations.

 

I have a lot of respect for the doctors you've worked with, but agree that they are not the ones I'd turn to for advice on lyme. It leaves you in a quandry. No single source, no one doctor who can help you unravel the thing that's plaguing your family. Try to read as much as you can, try to test as much as you can before getting on any planes.

 

The one word of caution I have is to not forge ahead to the point that you leave your spouse in the dust. I know the urgency you feel, the fear that damage is being done and has to be stopped at all costs. But assuming you have a marriage worth keeping, it's equally important to not abandon respect for your partner's voice. Do whatever you can to advocate for your point of view, but make sure you remember to look at the whole equation. It's easy to get on a forum of like-minded people and feel validated. And I'm by no means suggesting you stop fighting for your children. Only mentioning that going a half-step slower with your spouse on the same page may be preferable to getting somewhere faster but with casualties. (sorry - just have a friend going thru a crisis with her son and her marriage is suffering in the process).

[jenbug]

Ziva((hugs)) I really believe you and I might be going down a similar road. I am new to all this too, and I think we may have some stuff going on besides PANDAS and I really REALLY want to get it all figured out so my babies feel better, but from everything I have heard it can take awhile and if there is Lyme or other autoimmune things, it can really take a long time to get sorted out. I am very scared going down this road because of all this, but I know I am not alone and there is a lot of support here if I need it. My husband is also very worried and against the money part of all this, so that is another worry for me. However, he notices the changes as well and is willing to try it out for now. I think, for us anyhow, we will dip our feet in with the PANDAS doc (Dr. T tomorrow consult) and go from there. Then maybe further down the road we will look into an immunologist ot LLMD if the PANDAS treatments aren't helping. My son and daughter (the older 2) seem to do much better while on abx and then regress while off. However, my son has never been bitten by a tick; although, I have had at least 10+ attached to me since a kid, one instance in which I remember getting flu-like symptoms during and afterward, but they didn't know anything about it then. I don't think I got a rash, but I don't remember. I am fairly sure it could be co-infection with Lyme thaqt I passed to my kids through pregnancy, although many docs don't believe that yet. They are also very allergic to cow's milk as babies. Okay, enough of my rambling...just wanted to tell you you are not alone and that you can pm me ANYTIME you want and I will give you my # if you wanna talk and go through this together. Sam and many others on here are being so helpful to me right now and this is a great place! Hang in there...it will get better. I just keep telling myself that this is how medical/scientific advances are made--although painfully slow and with much debate. Also, on the plus side, isn't it great that they have something to be treated with? I keep wishing they had it around when I was a kid...hopefully I can get treated eventually with a LLLMD (Lyme doc, whatever the abbrev is).

Edited June 9, 2011 by jenbug

[ziva]

Thanks soooooo much for all of the info and support!

 

As I am reading up on Bartonella, I seem to remember my son having a wierd rash on his back, about the size of my hand recently. It was stripy and speckly, if that makes any sense. It was towards the end of his last abx, which was azith.

 

I am going to do the Igenex test tomorrow.

 

I just think it's so weird that my son was doing ok before the abx. It was my daughter that was in bad shape. Dr. T just wanted to make sure he and my daughter weren't passing anything back and forth. Now, my daughter is about the same, and my son is much worse. He is now having rages(didn't start until after azith), severe soreness in legs, today was the worst I've seen so far with him.

[MichaelTampa]

Thanks soooooo much for all of the info and support!

 

As I am reading up on Bartonella, I seem to remember my son having a wierd rash on his back, about the size of my hand recently. It was stripy and speckly, if that makes any sense. It was towards the end of his last abx, which was azith.

 

I am going to do the Igenex test tomorrow.

 

I just think it's so weird that my son was doing ok before the abx. It was my daughter that was in bad shape. Dr. T just wanted to make sure he and my daughter weren't passing anything back and forth. Now, my daughter is about the same, and my son is much worse. He is now having rages(didn't start until after azith), severe soreness in legs, today was the worst I've seen so far with him.

 

Sounds like the bugs responded to the azith by fighting back and perhaps changing into different forms, as lyme is known to do.