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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 






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Igenex all negative except band 41 is IND


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#1 sptcmom

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Posted 21 August 2010 - 05:29 PM

Finally have our Igenex results
Complete Lyme panel all negative
Western blot IGM band 41 was indeterminate, rest negative
IGG band 41 was one plus so weak positive, rest negative
Our local ILADS doc said its rules as negative for any Lyme.He did give us an herbal cyst buster to ease my mind.
DS also has an enlarged THYROID now :( . The doc switched us to new multivits with high iodine content
DS is doing better with iron supplements. Less pain but still limping badly. We're doing PT 2x/week.
Still waiting to speak to hematologist who is on vacation.
We have an appt with Dr Jones- should I still go?
Dr Jones did tell me in our phone talk that band 41 is of no significance
DS has had high mycoplasma IGG which is now testing negative with ARUP labs and Quest.
Maybe I should do the urine antigen and PCR DNA test with Igenex?
Dr K did say that PANDAS kids can have neuropathy so maybe the limping etc is that plus iron deficiency since ferritin is very low (7).
Dr K also says Augmentin 600ES can worsen the anemia and to go back down to 250 mgs. DS doesnot do well on low dose.
ESR is high at 29 so I switched fish oil from Nordic Naturals to OMAPURE today. I hope that helps. If anyone can share their Omapure experience I would so appreciate it.
What to do.... what to do..... what to do....


#2 lyme_mom

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Posted 21 August 2010 - 06:16 PM

Did your ilads doctor think any coinfections other than mycoplasma could be involved? Such as bartonella? You can have a false negative igenex igg or igm test for various reasons so the whole panel can make it more certain. However if your ilads doctor does not think Lyme is involved he probably knows. I highly recommend dr jones especially if you don't know what you are dealing with. He can spot Lyme in the way a child blinks her or his eye. He is amazing and nobody knows what is and is not Lyme better than he does. He has beentreating kids with Lyme and other infections for 40 years. At least you will get the most thorough pediatric visit your child has ever had w jones. Pm his symptoms if u want

#3 saidie10

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Posted 21 August 2010 - 06:30 PM

Wish I had some good advice for you like you did for me :( I know nothing about lyme and the other tests you speak of. Sending positive thoughts your way for healing...

#4 sptcmom

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Posted 21 August 2010 - 07:28 PM

Did your ilads doctor think any coinfections other than mycoplasma could be involved? Such as bartonella? You can have a false negative igenex igg or igm test for various reasons so the whole panel can make it more certain. However if your ilads doctor does not think Lyme is involved he probably knows. I highly recommend dr jones especially if you don't know what you are dealing with. He can spot Lyme in the way a child blinks her or his eye. He is amazing and nobody knows what is and is not Lyme better than he does. He has beentreating kids with Lyme and other infections for 40 years. At least you will get the most thorough pediatric visit your child has ever had w jones. Pm his symptoms if u want

OOPS! Forgot to mention that the entire Igenex Coinfection Panel also came back negative- all of them. Thats why the dilemma.
What you say makes sense. In my heart I did want to keep the appt with Dr Jones and I will just to have some peace of mind of having DS being seen by the best Lyme guy.

#5 suzan

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Posted 21 August 2010 - 08:04 PM

I'm sorry, I may have missed your other posts about your son's limping. Can you tell me about it? My dd9 has had a lot of trouble with leg pain and has had times where she could not walk for 1+ weeks. All testing by orthopedic doc's said nothing was wrong. Dr. T. said he has seen this type of thing before as a result of strep. Since she's been on daily antiboitics, it's only happened again 1 time, but she still has frequent pain. I have not tested her for lyme yet with Igenex (regular lab testing came back negative). I don't feel like it is lyme but still want to check out igenex just in case. No Mycoplasma but she did have positive HHV6 herpies titers. Treatment with antivirals seemed to help a little.

With her IVIG's, she will have leg pain after for a few days and then it gets better. But in the evenings when she's at her worst, her pain will resurface.

HUGS!

Susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#6 kimballot

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Posted 21 August 2010 - 08:12 PM

Hi -

I am sorry - I cannot recall your history entirely, but I am wondering if you (and Suzan) have had your kids C3D levels checked. My son has lots of joint pain that Dr. B has attributed to elevated C3D compounds. -- Just a thought if You've not gone that route yet!

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#7 suzan

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Posted 21 August 2010 - 08:28 PM

Hi -

I am sorry - I cannot recall your history entirely, but I am wondering if you (and Suzan) have had your kids C3D levels checked. My son has lots of joint pain that Dr. B has attributed to elevated C3D compounds. -- Just a thought if You've not gone that route yet!


We've tested for lots of things but I don't think that. I just read up a little on immune complexes but I don't quite get it. Do you have anything for me to read up on that is pretty easy to understand that shows what that is all about? I'm guessing a trip back to our immunologist may be in order but our neurologist is doing a lot of immune testing and is geting ready to concentrate on PANDAS/PITANDS cases. Maybe this is something he would be interested in looking into.

Susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#8 lyme_mom

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Posted 21 August 2010 - 09:01 PM

Hi -

I am sorry - I cannot recall your history entirely, but I am wondering if you (and Suzan) have had your kids C3D levels checked. My son has lots of joint pain that Dr. B has attributed to elevated C3D compounds. -- Just a thought if You've not gone that route yet!


We've tested for lots of things but I don't think that. I just read up a little on immune complexes but I don't quite get it. Do you have anything for me to read up on that is pretty easy to understand that shows what that is all about? I'm guessing a trip back to our immunologist may be in order but our neurologist is doing a lot of immune testing and is geting ready to concentrate on PANDAS/PITANDS cases. Maybe this is something he would be interested in looking into.

Susan

I think you wil be glad you saw dr jones and you never know how long he will be around to give you his advice at his age and with the wAy the Connecticut medical board is trying to close his doors. He does a ton of testing including for a number of immune things which I don't even understand. It's always good to get a second opinion even from a second Lyme doctor. We did that-using dr jones and our local ilads doctor and we had the peace of mind that we were doing all we could. They pretty much agreed about the diagnosis and treatment. Jones believes in testing and retesting for Lyme and coinfections throughout the treatment because a negative coinfection or Lyme test can turn positive after treatment. The symptoms are the most important factor they consider along with the tests. He uses igenex, specialty labs in California and quest for coinfecton testing. As pacificmama has posted, ilads doctors are very knowledgeable about
Many types of infections. Does your daughter have leg pain? If so, what kind?

#9 kimballot

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Posted 21 August 2010 - 09:39 PM

Hi -

I am sorry - I cannot recall your history entirely, but I am wondering if you (and Suzan) have had your kids C3D levels checked. My son has lots of joint pain that Dr. B has attributed to elevated C3D compounds. -- Just a thought if You've not gone that route yet!


We've tested for lots of things but I don't think that. I just read up a little on immune complexes but I don't quite get it. Do you have anything for me to read up on that is pretty easy to understand that shows what that is all about? I'm guessing a trip back to our immunologist may be in order but our neurologist is doing a lot of immune testing and is geting ready to concentrate on PANDAS/PITANDS cases. Maybe this is something he would be interested in looking into.

Susan



First off.. I agree with Lyme Mom that an appointment with Dr. Jones would be time well spent. Second - regarding Elevated C3D - I am still grappling with this myself, but Dr. B tested for this (and I know other docs do as well). My understanding (not expert) is that C#Ds represent immune complement and this is what your body uses as an immune response when it cannot fight off infection with they usual white blood cells or with antibodies because either your body is immune deficient (like my son) OR because the infection is very difficult (like lyme)- or both. Elevated C3d is a sign of an autoimmune disorder and is a general (non specific) test for things like lupus, rheumatoid arthritis, and other autoimmune disorders. My son's C3D level is elevated and I am told that is contributing to his joint pain and that it should improve with immune treatments. Others on this forum have also reported joint pain that improves with PEX, IVIG, and steroid bursts.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#10 sptcmom

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Posted 22 August 2010 - 06:14 AM

Hi -

I am sorry - I cannot recall your history entirely, but I am wondering if you (and Suzan) have had your kids C3D levels checked. My son has lots of joint pain that Dr. B has attributed to elevated C3D compounds. -- Just a thought if You've not gone that route yet!

Hi Kim
Yes, we did the circulating immune complexes and they're normal. The complement level is also normal and another immune complex test called the Raji assay is also normal.
My puzzle is should there be any immune complexes? Im guessing if there is a normal range for most labs then its ok to have them.
I have tried to read up extensively on immune complexes and the complement system.
I was curious how they contribute to inflammation and simply put immune complexes are heavier than just antigens and antibodies. The complement inturn binds to the antigen to highlight it for the T cells so the complex is heavy so to speak as the body tries to destroy the antigen. So when we do the sedimentation rate of blood (the ESR), the blood sediments faster since its heavier and you get a high sed rate. DS has had a very high sed rate of 62 since March 09 and that is now 29. Much better but still has three times the "normal" level of inflammation in his body.- Jodie

#11 kimballot

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Posted 22 August 2010 - 06:23 AM

That is good information for me. Thank you for sharing that. You said you are working with a hematologist so it will be interesting to hear what s/he has to say.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#12 sptcmom

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Posted 22 August 2010 - 06:29 AM

I'm sorry, I may have missed your other posts about your son's limping. Can you tell me about it? My dd9 has had a lot of trouble with leg pain and has had times where she could not walk for 1+ weeks. All testing by orthopedic doc's said nothing was wrong. Dr. T. said he has seen this type of thing before as a result of strep. Since she's been on daily antiboitics, it's only happened again 1 time, but she still has frequent pain. I have not tested her for lyme yet with Igenex (regular lab testing came back negative). I don't feel like it is lyme but still want to check out igenex just in case. No Mycoplasma but she did have positive HHV6 herpies titers. Treatment with antivirals seemed to help a little.

With her IVIG's, she will have leg pain after for a few days and then it gets better. But in the evenings when she's at her worst, her pain will resurface.

HUGS!

Susan

Thanks Susan.
My son now has negative ASO, antidnase is down from 960 to 262, mycoplasma is negative now and the Igenex came back as above mentioned. His Ferritin is very low now at 7. It was 74 last year in March 09. I do understand that Ferritin is low because of the high ESR and inflammation.
The scary part is we only tested last year for Ferritin and ESR since he developed a sudden onset of limping, leg pains etc. So don't know for how long this darn inflammation's been there in DS's body and the iron depleting. Dr K says he's probably had PANDAS since 22 months of age and we did see stuff from that far back again during flipping the pages after IVIG with Dr K in May.
DS8 now, developed sudden onset of limping left leg, left leg quad pains and that cycle of limp and spontaneous recovery went on 3 times since March 09 at 6-8 week cycles. Then he got leg spasms in right leg, pain and limping in right leg. His MRI came back as bone inflammationa nd edema but both non specific findings. A bunch of IDIOT specialists never tested for strep titers incl the biggest idiot of them all, a peds rheumatologist. His bone scan was normal, MRI brain and spine was normal. His left leg muscles atrophied, got RLS at night, insomnia and we did intense PT. It got better but again in February back to square one. This time we started IRON supplements and got very good results.We stopped iron because Dr K said after IVIG it can increase infections.
We drew blood , 14 vials for 12 week post IVIG retesting and the next day my son was coming down the stairs on his butt :( His left leg issues were back, pains, limping, etc. Got his iron panel from the lab the next day and yes the ferritin was at an all time low. Dr K then said to start iron supplements for short term. We are, he's doing better now with no pain a couple days but still bad limp and pelvic girdle muscle weakness. Still doing PT 2X/week. :(

Edited by sptcmom, 22 August 2010 - 06:31 AM.


#13 lyme_mom

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Posted 22 August 2010 - 12:32 PM

Apparently low magnesium can cause leg cramps too, although what you describe sounds pretty intense- more than a magnesium deficiency. Thigh cramps are a sign of babesia and calf cramps are a sign of bartonella. I think dr jones will know what to do. When do you go?

#14 sptcmom

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Posted 22 August 2010 - 04:02 PM

Apparently low magnesium can cause leg cramps too, although what you describe sounds pretty intense- more than a magnesium deficiency. Thigh cramps are a sign of babesia and calf cramps are a sign of bartonella. I think dr jones will know what to do. When do you go?

Thanks Lyme mom. I see Jones and Dr B in a couple days. We're in NJ and are driving down.
All Igenex tests for Babesia and Bartonella are totally negative. Honestly it doesn't matter what. I would be happy to treat whatever it maybe just as long as I know what the heck it is. I am definitely seeing Dr Jones for sure.Ihope he can test for viruses, Igenex urine test etc

#15 lyme_mom

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Posted 22 August 2010 - 04:23 PM

Good then you will one soon. My kids were always negative too but they had coinfections because they responded to the treatment. Let me know how you like him!




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