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More pieces of the puzzle revealed! Myco P+


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First I want to say THANK YOU Everyone on this forum- I would not have know the questions to ask, blood tests to demand or things to do to get where we are in 2 months! You have helped me unravel so many hidden problems that I am forever grateful!!! I never in a million years thought I would be in a Doctors office begging for antibiotics a couple months ago- now I have no problem doing it!!

 

I love my PED- I walked in her office Tuesday and asked for a list of blood test for my ds8 PANDAS and non pandas DD5 since we have a consult with Dr K on the 25th- I got the results today......

It has been about 2 months since last known strep infection for DS and we have had 3 rounds of antibiotics (Omnicef) since then - a different Dr "forgot" to run them when a couple weeks after exacerbation when I first found out about PANDAS- now I am a little more pushy and went to a different Dr and got the tests :D. I wanted to get them so I have something to work with- to see if there are rises or preferably falling numbers....

I think I am ready for Dr K! I also think it is pretty clear my son has been SICK!!!

 

DS

Streptozyme Screen with reflex to Titer- Positive

Streptozyme Titer 200- positive

ASO 307- High ( not as high as some of you but still considered elevated)

DNASE-B 340- High ( same comment as before but still considered elevated)

Mycoplasma- IGG 2.49- High ( negative is < .90)

Mycoplasma IGM 352 ( <770 considered negative)

All IGG subclasses- within normal range

EBV-negative

Sed rate- normal

C reactive protein- normal

 

Other tests in the past month- ( these were taken about a month after exacerbation)

Cam Kinase II 163

Anti-Lysoganglioside 320- technically normal but Kathy pointed out this is the highest inside "normal" and over double the mean- they are finding a trend with this

Anti-Tubulin- 500 normal

Anti-Dopamine 1- 500 normal but the absolute lowest normal

Anti-Dopamine 2- 2000 normal but the lowest normal

( the Dopamine is interesting for us b/c we tested his neurotransmitters and most were high but Dopamine was off the chart- you got to hate arrows at the end of graphs)

 

IGE- 253- but no significant allergies on prick test to justify raise in ige- Dr mentioned viruses can cause a rise

IGG- 857 normal

IGA- 44 with the range being 34-305 my friend who is an MD/DC thinks this is still too low and needs to be a consideration to watch

IGM 75 ( 30-208)

 

We also ran a metabolic profile that has elevated DHPPA which can be produced by Clostridia and Pseudomonas- which are Omebas which can be found in stagnant water- thinking back his stomach aches started after a trip to the lake last 4th of July....We will be doing a stool sample test next week- He has been on a parasite cleanse for approx 2 months at this point

 

 

DD5-Non PANDAS....drumroll please.... looking like she might be a carrier! She has not had a positive strep culture in exactly 1 year!

Streptozyme Screen with reflex to Titer- Positive

Streptozyme Titer 200- Positive

ASO_ 187- High (not super elevated but still it is considered High)

DNASE-B 120 ( interesting here -technically not high- for preschool it should be less than 60 for school age less than 170- she was in Kindergarten so technically school age but just out of preschool- that is a big jump in reference range)

Did not test her for Myco- but will ( the rest of the family too)

 

I need to finish up more testing on other family members but I just feel so justified that I was not crazy- my son does not need psychotropic meds- he has been very very sick and now we know why!!!

 

I also walked into a Dr's office today ( before I got the lab results but based on Cam Kinase and symptoms) without an appointment and got a month of zithromax for my ds- since he started exhibiting OCD symptoms recently ( new for us)we have an appt with Dr on Tues- but I did not want to wait- my ds as been slipping all week and it is breaking my heart!

 

Trusting the Mommy Gut! I don't like that these things are going, I would not wish it on anyone but at least my gut was right!

Brandy

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Mycoplasma is known to cause IgE response; it has been studied lately for its role in triggering asthma. My son tested positive for all foods tested for (almost) by RAST blood test, but very low. The interpretation of that was not "true" food allergy, but a general response since IgE was so high to grasses and pollens. His allergies are bad, with IgE in the 600's usually.

 

About the Pseudomonas and Clostridia... these are both rod shaped bacteria, both pathogenic. They aren't amoebae but still cause disease, especially in the gut.

 

I can't wait to find out what my son's cam kinase number is.

 

Hope the antibiotics help!

 

 

 

 

 

 

 

 

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The elevated DHPHPA (or whatever!) is most likely due to clostridia overgrowth in the gut due to frequent and high dose antibiotics. My 2 year old has that at the moment and I can tell you he gets quite aggressive when I don't manage it. He is taking Augmentin for pandas and vancomycin for clostridia (if I skip one day of vanco he becomes aggressive and this is not pandas).

 

Stephanie

 

First I want to say THANK YOU Everyone on this forum- I would not have know the questions to ask, blood tests to demand or things to do to get where we are in 2 months! You have helped me unravel so many hidden problems that I am forever grateful!!! I never in a million years thought I would be in a Doctors office begging for antibiotics a couple months ago- now I have no problem doing it!!

 

I love my PED- I walked in her office Tuesday and asked for a list of blood test for my ds8 PANDAS and non pandas DD5 since we have a consult with Dr K on the 25th- I got the results today......

It has been about 2 months since last known strep infection for DS and we have had 3 rounds of antibiotics (Omnicef) since then - a different Dr "forgot" to run them when a couple weeks after exacerbation when I first found out about PANDAS- now I am a little more pushy and went to a different Dr and got the tests :). I wanted to get them so I have something to work with- to see if there are rises or preferably falling numbers....

I think I am ready for Dr K! I also think it is pretty clear my son has been SICK!!!

 

DS

Streptozyme Screen with reflex to Titer- Positive

Streptozyme Titer 200- positive

ASO 307- High ( not as high as some of you but still considered elevated)

DNASE-B 340- High ( same comment as before but still considered elevated)

Mycoplasma- IGG 2.49- High ( negative is < .90)

Mycoplasma IGM 352 ( <770 considered negative)

All IGG subclasses- within normal range

EBV-negative

Sed rate- normal

C reactive protein- normal

 

Other tests in the past month- ( these were taken about a month after exacerbation)

Cam Kinase II 163

Anti-Lysoganglioside 320- technically normal but Kathy pointed out this is the highest inside "normal" and over double the mean- they are finding a trend with this

Anti-Tubulin- 500 normal

Anti-Dopamine 1- 500 normal but the absolute lowest normal

Anti-Dopamine 2- 2000 normal but the lowest normal

( the Dopamine is interesting for us b/c we tested his neurotransmitters and most were high but Dopamine was off the chart- you got to hate arrows at the end of graphs)

 

IGE- 253- but no significant allergies on prick test to justify raise in ige- Dr mentioned viruses can cause a rise

IGG- 857 normal

IGA- 44 with the range being 34-305 my friend who is an MD/DC thinks this is still too low and needs to be a consideration to watch

IGM 75 ( 30-208)

 

We also ran a metabolic profile that has elevated DHPPA which can be produced by Clostridia and Pseudomonas- which are Omebas which can be found in stagnant water- thinking back his stomach aches started after a trip to the lake last 4th of July....We will be doing a stool sample test next week- He has been on a parasite cleanse for approx 2 months at this point

 

 

DD5-Non PANDAS....drumroll please.... looking like she might be a carrier! She has not had a positive strep culture in exactly 1 year!

Streptozyme Screen with reflex to Titer- Positive

Streptozyme Titer 200- Positive

ASO_ 187- High (not super elevated but still it is considered High)

DNASE-B 120 ( interesting here -technically not high- for preschool it should be less than 60 for school age less than 170- she was in Kindergarten so technically school age but just out of preschool- that is a big jump in reference range)

Did not test her for Myco- but will ( the rest of the family too)

 

I need to finish up more testing on other family members but I just feel so justified that I was not crazy- my son does not need psychotropic meds- he has been very very sick and now we know why!!!

 

I also walked into a Dr's office today ( before I got the lab results but based on Cam Kinase and symptoms) without an appointment and got a month of zithromax for my ds- since he started exhibiting OCD symptoms recently ( new for us)we have an appt with Dr on Tues- but I did not want to wait- my ds as been slipping all week and it is breaking my heart!

 

Trusting the Mommy Gut! I don't like that these things are going, I would not wish it on anyone but at least my gut was right!

Brandy

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two questions here,

 

Stephanie,

what did you mean by DPHDHA? what is that? where is that on the test? and where did you find of it being linked to clostridia. i'm interested in the clostridia. could you elaborate or give me more info?

 

bqbarnes,

aside from the myco p being elevated, what else is standing out for you that you think makes your son so sick? i don't think his levels are grossly out of range. Dr. K. hasn't reviewed this yet, correct?

 

 

thanks

Faith

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two questions here,

 

Stephanie,

what did you mean by DPHDHA? what is that? where is that on the test? and where did you find of it being linked to clostridia. i'm interested in the clostridia. could you elaborate or give me more info?

 

bqbarnes,

aside from the myco p being elevated, what else is standing out for you that you think makes your son so sick? i don't think his levels are grossly out of range. Dr. K. hasn't reviewed this yet, correct?

 

 

thanks

Faith

Faith-

I think it is an unfortunate combination of things- our consult with Dr K is June 25th- however-I have been emailing him back and forth- even while he is in Europe- he asked me to get a circulating immune complex test before the consult too- which I will request next week.

 

1) Cam Kinase- 163 definitely PANDAS range- according to Kathy Alvarez. He does not have any SC so I would not expect him to be too much higher. Normal is 93 and he is above the mean of 150- that is high enough for me to indicate a big problem but he have never gotten so bad where I would consider him non-functioning- which is a blessing. Difficult, out of control, even the OCD I now sees he has is minor compared to many I see on the board- but it is getting worse. However the exorcist- boy he is quite the expert at that one- that is NOT MILD! :) . The positive strep test after the last one was enough to convince me!! Then there was the complete reversal after the double course of antibiotics that was the icing on the cake- my sweet boy was back!

2) Myco P- looks like our lab measures this differently than some others his IGG is 2.49 a negative is .9 and below- over double the norm

3) H pylori- He had it in the fall(we had an endoscopy) and continues to have bad stomach problems( we are going back to GI next week for stool sample to see if he still has it and other parasite possibilities)

4) If he has the Clostridia or other parasites- the MD/DC thinks he does-( muscle testing- she also confirmed myco before the lab results) it could be contributing but we do not know for sure yet- she is the one that started the parasite cleanse

5) his casein peptide was one of the highest the Dr had seen it a long time-5.45 it should be <.56 we have been dairy free for about 4 weeks now

6)DHPPA is Dihydroxyphenylpropionic Acid- we had a metabolic profile done and his was elevated which causes Bacterial Dysbyosis- his is a 7 out of 10 (10 being the worst)- it indicated Clostridia and Pseudomona are likely culprits but not guaranteed- thus the reason for the stool test

7) his ige is elevated without any real major allergies after big allergy test- Dr said it could indicate a virus or could be the Myco causing the elevation

8) his Amino Acid malabsorption is a 5 out of 10 - so not horrible but not where it should be-

9) his neurotransmitters are not on track- his Dopamine is off the charts, PEA, Taurine and are the only ones that are not elevated outside of normal reference range

10) His Lyme test was negative but 41 had ++- which is often identified with a flagellated microbe- which can be Myco ( to my understanding), He also had an IND on 39

10) It is interesting that ds Anti Dopamine is on low range for 1&2 on Cunningham b/c he has too much- he definitely needs help regulating too much Dopamine- he isn't getting it-

11) His anti- Lyso being 320- Kathy pointed this out a "technically" inside normal range but double the mean and a trend they are seeing in PANDAS kids

12) all titers we checked on him were 2 months past last known strep infection and after many rounds of antibiotic b/c our Dr "forgot" to run them the first time shortly after the exacerbation that brought us to PANDAS- so for us we still think they are too high.

13) He also has a spot of vitiligo which is an autoimmune marker which means he probably more susceptible to all this CRAP....

14) his sisters titers are elevated- not super high but enough that it could be a problem- being divorced we split the kids up a lot on the weekend- honestly b/c Ds can be so difficult- but when they get around each other he is just MORE activated- he could be perfectly fine being one on one with either parent and then after being around his sister for a while- something clicks in...and he changes

 

So while his titers are not off the charts- everything is elevated and so many other things are elevated- it is as if everything in his body is over activated right now. We know there is a lingering infection due to a number of different markers.....now the detective work in how to fix it!

We are on day 3 of a month of Azythyromax- ENT, GI and immunologist appts next week and Dr K on the 25th...we are also getting an OT eval on the 11th and a Psychologist who specializes in OCD on the 16th....

This is the summer of answers and solutions!

Brandy

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My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.

 

Congratulations on figuring this all out on behalf of your son.

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

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Thankfully those rages have resolved with antibiotics for now!!! They are frightening. I find it interesting that they have similar presentation.

 

My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.

 

Congratulations on figuring this all out on behalf of your son.

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

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Thankfully those rages have resolved with antibiotics for now!!! They are frightening. I find it interesting that they have similar presentation.

 

My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.

 

Congratulations on figuring this all out on behalf of your son.

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

Reading through some of your posts- it looks like you have your hands full with too many PANDAS- it is interesting the similarities with your youngest son.

I can't even imagine!!! I am so hopeful that everything clears up with the antibiotic here...however that Mommy Gut tells me we are headed to IVIG....

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My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.

 

Congratulations on figuring this all out on behalf of your son.

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

 

 

what do the two of you make of my son's anti-lysoganglioside which is not at 320, but 1280......(cam was 179)..we have tics as main presentation and some ocd, but I'd rate it secondary. don't think he has what I would call rages, but is very headstrong and likes to have his way, so just more relentless I would say, and very irritable in the mornings especially. (just to not, fuelforall also has 1280 for anti lyso)

 

thanks

Faith

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My younger son's Anti-Lysoganglioside was also 320 and he presented with mostly OCD, unexplained rage behavior not typical of his age group.

 

Congratulations on figuring this all out on behalf of your son.

The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too....

 

 

what do the two of you make of my son's anti-lysoganglioside which is not at 320, but 1280......(cam was 179)..we have tics as main presentation and some ocd, but I'd rate it secondary. don't think he has what I would call rages, but is very headstrong and likes to have his way, so just more relentless I would say, and very irritable in the mornings especially. (just to not, fuelforall also has 1280 for anti lyso)

 

thanks

Faith

From what Kathy said- is they are seeing a trend in higher anti-lysoganglioside but I think the main thing to look at is the Cam Kinase. However we know there are some PANDAS kids who are obviously PANDAS without elevated Cam Kinase For me and I am so new at this I am just guessing- I don't necessarily think the symptoms are worse in one area over another because of higher scores- I think it depends on each kid and what is going on in each body and how their individual system works. Every PANDAS kid is different and the elevations mean something is not working properly- no matter how slightly elevated it is- it is causing misfiring. One kid may have tics and no OCD the other has OCD and no tics- to my knowledge the scores do not correlate to types of symptoms- Buster would probably be the best person to ask that one. I thought all I had was rages and several small tic episodes( but not in several years)- now I see his OCD picking up everyday- he has to touch things in patterns on both sides of his body- he say she has had it for a long time and never said anything before now- he was always in motion so it was hard to see when he hid it- now it is all I see. That is what is so insidious about this disease is there is no textbook case that a Dr can say- Ah you have #1,#2 and #3 so therefore you are PANDAS. It takes thinking , detective work and very resourceful and determined parents. THANK GOD for this forum- I would NEVER be where I am today without it! I first heard the word PANDAS on 3/29/10- I don't think I will ever forget that day- it provided an answer and fear and all sorts of unknowns but it also provided HOPE!

Brandy

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Brandy, it sounds like your child's problem is a great deal gut related, like my son. My son cleared up last year on flagyl and vancomycin. Dr. Lin has put him back on vancomycin, along with azithromycin, and an antifungal. I have only started the azithromycin so far. He vomited after the first dose, became slightly nauseated on the second dose, which indicates that he may have more bad bugs in his gut hence the reason he had not returned to the boy I once knew. My mother noticed a difference after 24 hours. He seemed to come out of his shell a bit, and she said he seemed happier. The rage stuff I am very familiar with. It's ugly, but it does go away. I think it comes because they feel so ill, and there is disinhibition going on in the brain so they do or say whatever they feel.

 

In my son's case, the vancomycin will knock out anything still lurking in the gut, the azithromycin will get any strep that may be hiding, as well mycoplasma, and the antifungal will prevent a fungal colonization for being on so many antibacterials. We are waiting to get cam kinase back and then we'll know to what degree he has been affected all along.

 

Hope your appt. goes well with Dr. K. I'm sure it will!

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Brandy, it sounds like your child's problem is a great deal gut related, like my son. My son cleared up last year on flagyl and vancomycin. Dr. Lin has put him back on vancomycin, along with azithromycin, and an antifungal. I have only started the azithromycin so far. He vomited after the first dose, became slightly nauseated on the second dose, which indicates that he may have more bad bugs in his gut hence the reason he had not returned to the boy I once knew. My mother noticed a difference after 24 hours. He seemed to come out of his shell a bit, and she said he seemed happier. The rage stuff I am very familiar with. It's ugly, but it does go away. I think it comes because they feel so ill, and there is disinhibition going on in the brain so they do or say whatever they feel.

 

In my son's case, the vancomycin will knock out anything still lurking in the gut, the azithromycin will get any strep that may be hiding, as well mycoplasma, and the antifungal will prevent a fungal colonization for being on so many antibacterials. We are waiting to get cam kinase back and then we'll know to what degree he has been affected all along.

 

Hope your appt. goes well with Dr. K. I'm sure it will!

 

Thanks for the info- I am going to save it and bring with me to our GI appt on Wednesday- adding to my medical folder that travels with me!! I thin my Drs are all young enough that they are willing to learn with me! If not we will find ones that will! THANKS!

Brandy

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