Dr_Rosario_Trifiletti Posted March 3, 2010 Report Share Posted March 3, 2010 As you may know, I have been interested in positive Mycoplasma IgG titers and have been treating a number of patients here for mycoplasma. What is the chance of seeing a positive Mycoplasma IgG in the general population? Answer: it depends on age See Fig 1B in this paper http://www.ncbi.nlm.nih.gov/pmc/articles/P...df/cd000734.pdf You find elevated mycoplasma titers in 40% of adolescents in a healthy Finnish population. I'm not sure what the USA numbers are, but they're likely to be similar. Of course, very few of these people have tics and/or OCD; so it is going to be hard to find an association between elevated mycoplasma IgG and anything. However, what I'm finding is that patients with PANDAS often have: 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5%. So, the proper study would be to look at multiple co-infections, not just one, to prove association. You would need an enormously large population to prove association with any one alone. MY GUESS: So what is the common thread here? : strep, mycoplasma and Lyme all have tendencies to be persistent illnesses, i.e. in some people there is difficulty clearing them from the body. There is a progressive accumulation of peristent bacterial illness, individually subclinical but together, problematic. All signaling through a common TLR (toll-like receptor) mechanism producing abnormal cytokines and ultimately PANDAS like symptoms. P.S. These are just my ideas, not reality. But you gotta have hypotheses or there are no answers - that just how science works. Dr. T Link to comment Share on other sites More sharing options...
kimballot Posted March 3, 2010 Report Share Posted March 3, 2010 Dr. T - First off - thank you for all you do for our kids! Second - I am trying to understand this better. You are seeing 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5% I am wondering what percent of PANDAS patients have two of the above or none of the above... I know the ideal study is a prospective study with large numbers, but is it possible to do a retrospective study with your patients and everyone else's patients? Perhaps that could be the basis of a prospective study. Could we (or do we) have a national PANDAS database, where we can enter this information on kids that we think have PANDAS and then crunch numbers to make some sense of it all? You sent the excel file, which is a great start. I know I would gladly sign a consent form to share my son's info (especially if it is anonymous info) with a database if it would further the research... just wondering... Link to comment Share on other sites More sharing options...
Dr_Rosario_Trifiletti Posted March 3, 2010 Author Report Share Posted March 3, 2010 Dr. T - First off - thank you for all you do for our kids! Second - I am trying to understand this better. You are seeing 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5% I am wondering what percent of PANDAS patients have two of the above or none of the above... I know the ideal study is a prospective study with large numbers, but is it possible to do a retrospective study with your patients and everyone else's patients? Perhaps that could be the basis of a prospective study. Could we (or do we) have a national PANDAS database, where we can enter this information on kids that we think have PANDAS and then crunch numbers to make some sense of it all? You sent the excel file, which is a great start. I know I would gladly sign a consent form to share my son's info (especially if it is anonymous info) with a database if it would further the research... just wondering... From your lips to God's ears! Dr. T Link to comment Share on other sites More sharing options...
Dr_Rosario_Trifiletti Posted March 3, 2010 Author Report Share Posted March 3, 2010 Dr. T - First off - thank you for all you do for our kids! Second - I am trying to understand this better. You are seeing 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5% I am wondering what percent of PANDAS patients have two of the above or none of the above... I know the ideal study is a prospective study with large numbers, but is it possible to do a retrospective study with your patients and everyone else's patients? Perhaps that could be the basis of a prospective study. Could we (or do we) have a national PANDAS database, where we can enter this information on kids that we think have PANDAS and then crunch numbers to make some sense of it all? You sent the excel file, which is a great start. I know I would gladly sign a consent form to share my son's info (especially if it is anonymous info) with a database if it would further the research... just wondering... From your lips to God's ears! Dr. T Actually, I meant in the GENERAL POPULATION, i.e. someone you meet randomly at the mall or something, those are the numbers. That person would have a 20% chance of having a positive strep titer, 10-40% chance of having a positive mycoplasma titer and a 10-20% chance of having positive p41 IgG and IgM on Lyme Western blot. Assuming these to be independent factors (and they may not be) the chance of having all three would be about ) 0.2 x 0.2 x 0.1 or 4-8%. I think at least 50% of PANDAS patients have >2 of these positive and 20% all 3, much higher than the general population. So the key to PANDAS in many cases is co-infection .... Dr. T Link to comment Share on other sites More sharing options...
Fixit Posted March 3, 2010 Report Share Posted March 3, 2010 Dr. T - First off - thank you for all you do for our kids! Second - I am trying to understand this better. You are seeing 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5% I am wondering what percent of PANDAS patients have two of the above or none of the above... I know the ideal study is a prospective study with large numbers, but is it possible to do a retrospective study with your patients and everyone else's patients? Perhaps that could be the basis of a prospective study. Could we (or do we) have a national PANDAS database, where we can enter this information on kids that we think have PANDAS and then crunch numbers to make some sense of it all? You sent the excel file, which is a great start. I know I would gladly sign a consent form to share my son's info (especially if it is anonymous info) with a database if it would further the research... just wondering... From your lips to God's ears! Dr. T Actually, I meant in the GENERAL POPULATION, i.e. someone you meet randomly at the mall or something, those are the numbers. That person would have a 20% chance of having a positive strep titer, 10-40% chance of having a positive mycoplasma titer and a 10-20% chance of having positive p41 IgG and IgM on Lyme Western blot. Assuming these to be independent factors (and they may not be) the chance of having all three would be about ) 0.2 x 0.2 x 0.1 or 4-8%. I think at least 50% of PANDAS patients have >2 of these positive and 20% all 3, much higher than the general population. So the key to PANDAS in many cases is co-infection .... Dr. T Could be that but if i may disagree on a purely personal and maybe pedestrian level DS woudl tic with strep...not other kids...i believe DS had Rf with the joint pain ..not other kids...not everykids who gets any illness will get the severe reaactons we get or maybe none at all....I'm sure i'm repeating things you already know or think But Now DS doesn't seem to get strep the last 2yearish...i wonder if the last 3-4 cases where he ticced were acutlly MP and since ds got strep so easily and the docs could see he was presenting with some kind of illeness(golfball galds etc and past strep history) they gave me abx and i got it early with the right abx(also maybe that's why ds igm isn't rising again because he got it originally 2years ago or 11 months ago) this time i got the wrong abx and its been 11 months, so i'm guessing recovery will take longer.... but what i am saying is his new trigger might have changed to something more invasive/evasive and its just MP (as his bb is closing).....or are you saying maybe he has MP and a virus and/or some other bacteria...Maybe treat with something like valtrex too??? Link to comment Share on other sites More sharing options...
Fixit Posted March 3, 2010 Report Share Posted March 3, 2010 Another thought on the age when the kids seem to get MP if you notice it looks like the same age as many would claim TS onset so....maybe across the board, everyones immune system is lower during purberty onset and for those with ts ocd their body cant fight the battle Link to comment Share on other sites More sharing options...
kimballot Posted March 3, 2010 Report Share Posted March 3, 2010 "Actually, I meant in the GENERAL POPULATION, i.e. someone you meet randomly at the mall or something, those are the numbers. That person would have a 20% chance of having a positive strep titer, 10-40% chance of having a positive mycoplasma titer and a 10-20% chance of having positive p41 IgG and IgM on Lyme Western blot. Assuming these to be independent factors (and they may not be) the chance of having all three would be about ) 0.2 x 0.2 x 0.1 or 4-8%. I think at least 50% of PANDAS patients have >2 of these positive and 20% all 3, much higher than the general population. So the key to PANDAS in many cases is co-infection .... Dr. T" Ah... thanks for the clarification. So you do think it is much higher in PANDAS.... are you basing this on the kids you have seen or on discussions with other docs, or on research? Also, you do note that these may be independent factors but may also be interacting factors.There is also the interacting piece of the child's body. I mean, (as fixit noted) some kids can have all of the positive titers and be just fine... so what makes the PANDAS kids different? I know we are probably decades away from understanding the genetics behind this, but it seem like that is a crucial part of the equation. Link to comment Share on other sites More sharing options...
ajcire Posted March 3, 2010 Report Share Posted March 3, 2010 Seems like for a child who has more than one of those... it would be impossible to know if some of them are benign as might be in the general population it's found in or not or if they are also causing problems. Link to comment Share on other sites More sharing options...
peglem Posted March 3, 2010 Report Share Posted March 3, 2010 But wouldn't the prevalence of multiple infectious agents just point to some kind of immune system problem/defect? PANDAS kids' are not fighting off these microbes like the general population, and is either making defective auto-AB, or is not managing to clean up AB that is attacking/reacting w/ self. Link to comment Share on other sites More sharing options...
tired mom Posted March 3, 2010 Report Share Posted March 3, 2010 As you may know, I have been interested in positive Mycoplasma IgG titers and have been treating a number of patients here for mycoplasma. What is the chance of seeing a positive Mycoplasma IgG in the general population? Answer: it depends on age See Fig 1B in this paper http://www.ncbi.nlm.nih.gov/pmc/articles/P...df/cd000734.pdf You find elevated mycoplasma titers in 40% of adolescents in a healthy Finnish population. I'm not sure what the USA numbers are, but they're likely to be similar. Of course, very few of these people have tics and/or OCD; so it is going to be hard to find an association between elevated mycoplasma IgG and anything. However, what I'm finding is that patients with PANDAS often have: 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5%. So, the proper study would be to look at multiple co-infections, not just one, to prove association. You would need an enormously large population to prove association with any one alone. MY GUESS: So what is the common thread here? : strep, mycoplasma and Lyme all have tendencies to be persistent illnesses, i.e. in some people there is difficulty clearing them from the body. There is a progressive accumulation of peristent bacterial illness, individually subclinical but together, problematic. All signaling through a common TLR (toll-like receptor) mechanism producing abnormal cytokines and ultimately PANDAS like symptoms. P.S. These are just my ideas, not reality. But you gotta have hypotheses or there are no answers - that just how science works. Dr. T your ideas ARE my reality Link to comment Share on other sites More sharing options...
JAG10 Posted March 4, 2010 Report Share Posted March 4, 2010 What would be the impact on the incidence in the general population to have two siblings or family members with 2 or 3 of these co-infections? Link to comment Share on other sites More sharing options...
lyme_mom Posted March 4, 2010 Report Share Posted March 4, 2010 Another thought on the age when the kids seem to get MPif you notice it looks like the same age as many would claim TS onset so....maybe across the board, everyones immune system is lower during purberty onset and for those with ts ocd their body cant fight the battle Or these children had these infections all along and were handling them until hormonal change brought them to the surface. Lyme Disease infections often surface during periods of hormonal change (puberty, menopause, etc.). Lyme Mom Link to comment Share on other sites More sharing options...
Fixit Posted March 4, 2010 Report Share Posted March 4, 2010 Another thought on the age when the kids seem to get MPif you notice it looks like the same age as many would claim TS onset so....maybe across the board, everyones immune system is lower during purberty onset and for those with ts ocd their body cant fight the battle Or these children had these infections all along and were handling them until hormonal change brought them to the surface. Lyme Disease infections often surface during periods of hormonal change (puberty, menopause, etc.). Lyme Mom i could buy that Link to comment Share on other sites More sharing options...
Bat_Sheva_Myllys Posted March 7, 2010 Report Share Posted March 7, 2010 As you may know, I have been interested in positive Mycoplasma IgG titers and have been treating a number of patients here for mycoplasma.What is the chance of seeing a positive Mycoplasma IgG in the general population? Answer: it depends on age See Fig 1B in this paper http://www.ncbi.nlm.nih.gov/pmc/articles/P...df/cd000734.pdf You find elevated mycoplasma titers in 40% of adolescents in a healthy Finnish population. I'm not sure what the USA numbers are, but they're likely to be similar. Of course, very few of these people have tics and/or OCD; so it is going to be hard to find an association between elevated mycoplasma IgG and anything. However, what I'm finding is that patients with PANDAS often have: 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5%. So, the proper study would be to look at multiple co-infections, not just one, to prove association. You would need an enormously large population to prove association with any one alone. MY GUESS: So what is the common thread here? : strep, mycoplasma and Lyme all have tendencies to be persistent illnesses, i.e. in some people there is difficulty clearing them from the body. There is a progressive accumulation of peristent bacterial illness, individually subclinical but together, problematic. All signaling through a common TLR (toll-like receptor) mechanism producing abnormal cytokines and ultimately PANDAS like symptoms. P.S. These are just my ideas, not reality. But you gotta have hypotheses or there are no answers - that just how science works. Dr. T Prevalence of IgG in the youth population is known and normal, nothing new there. What the article did not reveal is how long after an actual infection is the IgG supposed to be high and rising, and does an on going rise in IgG (say, for 5 years, as in Sandra's case) an indication of persistant presence of M-Pneomoniae. Link to comment Share on other sites More sharing options...
Dr_Rosario_Trifiletti Posted March 7, 2010 Author Report Share Posted March 7, 2010 As you may know, I have been interested in positive Mycoplasma IgG titers and have been treating a number of patients here for mycoplasma.What is the chance of seeing a positive Mycoplasma IgG in the general population? Answer: it depends on age See Fig 1B in this paper http://www.ncbi.nlm.nih.gov/pmc/articles/P...df/cd000734.pdf You find elevated mycoplasma titers in 40% of adolescents in a healthy Finnish population. I'm not sure what the USA numbers are, but they're likely to be similar. Of course, very few of these people have tics and/or OCD; so it is going to be hard to find an association between elevated mycoplasma IgG and anything. However, what I'm finding is that patients with PANDAS often have: 1. Peristently elevated ASO, ADB or streptozyme (about 20% chance) 2. Persistently elevated Mycoplasma IgG (about 40% chance) 3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance The chance of having all three together - probably no more than 5%. So, the proper study would be to look at multiple co-infections, not just one, to prove association. You would need an enormously large population to prove association with any one alone. MY GUESS: So what is the common thread here? : strep, mycoplasma and Lyme all have tendencies to be persistent illnesses, i.e. in some people there is difficulty clearing them from the body. There is a progressive accumulation of peristent bacterial illness, individually subclinical but together, problematic. All signaling through a common TLR (toll-like receptor) mechanism producing abnormal cytokines and ultimately PANDAS like symptoms. P.S. These are just my ideas, not reality. But you gotta have hypotheses or there are no answers - that just how science works. Dr. T Yes, Bat-Sheva that is the big question! Does the persistently high Mycoplasma IgG just reflect a residua of an old infection or indicate a chronic persistent infection ? I have searched hard for a few weeks now and can't seem to find an answer to this .... From all that is known about the in vitro behavior of M.P. it is a nasty tenacious obligate intracellular pathogen that is the bane of all that work with cell cultures - and that is a whole lot of biologists and medical scientists! So why would one think it should behave otherwise inside the body. I'm voting for elevated M.P. IgG = chronic persistent infection, and treating according to that assumption, until someone can show me literature to the contrary! Dr. T Prevalence of IgG in the youth population is known and normal, nothing new there. What the article did not reveal is how long after an actual infection is the IgG supposed to be high and rising, and does an on going rise in IgG (say, for 5 years, as in Sandra's case) an indication of persistant presence of M-Pneomoniae. Link to comment Share on other sites More sharing options...
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