Immune sytem labs are back

[peglem]

I'm probably way more excited about this than I should be, but we may be getting some answers and that's just such a novelty! I haven't seen the test results yet, but the Immunologist said she had low titers (I'm a little confused, because he said not ASO strep titers). So, now they're going to check her immune response to pneumovax. I checked out the pneumovax, and it is just the vaccine in saline-no thimerosol or any metals.

[Mother's Heart]

WEll, THAT is cool that the testing is showing some information. I hope it helps. :)

How is she doing today? I think you mentioned yet more strep this week?

[peglem]

Well, she got some kind of cold or something last week, but tested neg. for strep...benedril and those wonderful, melt in your mouth cough strips (so easy to give) seem to relieve it. She seems to be having some trouble with constipation on and off. Its always something. She's getting another strep test tomorrow, because I don't want to give the pneumonia vaccine on Thursday if she's sick. When she's not sick, she is so amazingly happy and easy going w/ the infectious joy of a toddler...I want her like that all the time!

[Mother's Heart]

yes. I remember the days of always something to be struggling through on the health front. I used to love it when that morning would come that Donovan turned the corner and finally felt better. It was like he couldn't believe he actually felt good and he was almost euphoric. Always a fun time. I wish Allie could lick this stuff and feel better most of the time too.

[Isabelle]

are they tested for that particular strain of strep for PANDAS?

when danny was tested in 2001 for all strep and 6 herpes they found him with high titers and the doctor didn't know what to think and said everybody has been infected at one time or another, but danny never had a lesion in his mouth for herpes.

i would like to know more about that vaccine test....keep us updated

[peglem]

I've been kind of suspicious that this is NOT PANDAS, because there is no delayed reaction to the strep. With PANDAS the problems continue after the strep because the antibodies that cause the autoimmune response persist in the bloodstream for several months after the actual strep infection. So, under the PANDAS theory, Allie should not recover between bouts of strep, But she does (even though the periods between episodes are very short). An immunologist (this surprised me) does not deal with autoimmune disorders, only immune system activation or inactivation. To investigate autoimmune you need a rheumatologist, which is what we'll do next if this immune system thing turns out to be a bust. But, it makes sense to me that her immune system is not working properly since she is not able to combat the strep. Even if we did not treat with antibiotics, her own immune system should be able to get rid of it. I wonder, can demons take the form of bacteria?

[Mother's Heart]

I wonder, can demons take the form of bacteria?

:D yup. I'm pretty sure they can. :)

[peglem]

:D yup. I'm pretty sure they can. :)

I was only 1/2 joking. When she's sick it really does look like demon possession.

[Mother's Heart]

I too, was only 1/2 joking. I have SEEN those 'demons'. aye aye aye! :eek:

[Isabelle]

rheumatologist, makes sense, i think. Allie gets "possessed" while ON strep and is an angel off streps......

Demons in a bacteria? Yes, and it's called Chorea/St. Vitus dance/Sydenman's chorea

en.wikipedia.org/wiki/Chorea_(disease)

[peglem]

Demons in a bacteria? Yes, and it's called Chorea/St. Vitus dance/Sydenman's chorea

en.wikipedia.org/wiki/Chorea_(disease)


But Sydenham's is really just PANDAS with the addition of a severe movement disorder, and like PANDAS, persists for a long time after the actual strep infection is gone. There are those who would claim that you can't get sydenham's unless you've had rheumatic fever. Anyway, I hope it doesn't come down to AI disorder. those are such boogers to treat.

[Isabelle]

now, i'm totally confused :o :rolleyes:

editing: got it!

Found an extensive study on "Comparative Genomics of Autism, Tourette Syndrome and Autoimmune/Inflammatory Disorder"

Looks like this study put together what Dr. Wakefield said inflammation, gut celiac, etc, autoimmune diseases, autism, tourette, etc.

http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/cgoatad.pdf

[NTLegend]

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[peglem]

Actually, Allie has double insurance so everything is covered 100%. She is on our regular family insurance and the state pays whatever they don't cover. I want the tests, because, I want answers.

So, I took her for a strep test this afternoon, just to make sure she wasn't streppy before getting the pneumovax tomorrow....She's streppy...shoot w/ an "i"!

[Isabelle]

So, I took her for a strep test this afternoon, just to make sure she wasn't streppy before getting the pneumovax tomorrow....She's streppy...shoot w/ an "i"![/QUOTE]

ok, do they say which strep strain she is infected with? I was told that to know which one was important to get effective, right antibiotic/treatment, that requires culture the sample.


Excuse my slowness :( :rolleyes: ...what the he.. is "shoot w/ an "i"...." means

[peglem]

Excuse my slowness :( :rolleyes: ...what the he.. is "shoot w/ an "i"...." means

Replace the "oo" with an "i"

The rapid strep test detects strepA (aurelius?). The pneumovax is for the pneumonia causing ones, but I think its the same part of the immune system that responds to both. They don't have a way to vaccinate against strepA, and so cannot check the reaction. So, they use the pneumonia vaccine to check the system response. Anyway, we'll have to delay the vaccine until she finishes the antibiotics.

[Lara]

Found an extensive study on "Comparative Genomics of Autism, Tourette Syndrome and Autoimmune/Inflammatory Disorder"

Looks like this study put together what Dr. Wakefield said inflammation, gut celiac, etc, autoimmune diseases, autism, tourette, etc.

http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/cgoatad.pdf

Hang on a sec...

That article above says
Interestingly, the B-cell marker D8/17 has been found in autism, Tourette syndrome, and OCD patients [80-82].

[80] Swedo SE, Leonard HL, Mittleman BB, Allen AJ, Rapoport JL, Dow SP, Kanter ME, Chapman F, Zabriskie J. Identification of children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections by a marker associated with rheumatic fever. Am J Psychiatry 1997 154:110-112

[81] Hollander E, DelGiudice-Asch G, Simon L, Schmeidler J, Cartwright C, DeCaria CM,Kwon J, Cunningham-Rundles C, Chapman F, Zabriskie JB. B lymphocyte antigen D8/17 and repetitive behaviors in autism. Am J Psychiatry 1999 156:317-320

82] Murphy TK, Goodman WK, Fudge MW, Williams RC Jr, Ayoub EM, Dalal M,
Lewis MH, Zabriskie JB. B lymphocyte antigen D8/17: a peripheral marker for
childhood-onset obsessive-compulsive disorder and Tourette's syndrome? Am J Psychiatry 1997 154:402-407


However,
Yes, the marker was found, but later they found..............

Volume 44 Issue 5 Page 782 - July 2003
Gale Inoff-Germain, Romeo S. Rodríguez, Saul Torres-Alcantara, María Juana Díaz-Jimenez, Susan E. Swedo, Judith L. Rapoport (2003)
An immunological marker (D8/17) associated with rheumatic fever as a predictor of childhood psychiatric disorders in a community sample
Journal of Child Psychology and Psychiatry 44 (5), 782–790.
doi:10.1111/1469-7610.00163

An immunological marker (D8/17) associated with rheumatic fever as a predictor of childhood psychiatric disorders in a community sample

Background: Previous studies have documented that various behavioral disturbances accompany Sydenham's chorea, a neurologic variant of rheumatic fever. Further, an immunological marker associated with rheumatic fever (monoclonal antibody D8/17) has been reported to be elevated in several neuropsychiatric disorders, most frequently tics and obsessive-compulsive disorder. We examined this association in a community sample of children previously identified as being D8/17 positive or negative. It was hypothesized that D8/17 positivity would predict increased rates of tics and obsessive-compulsive disorder, even in the absence of Sydenham's chorea. Possible associations with other disorders accompanying Sydenham's chorea – hyperactivity, anxiety, and depression, also were explored.

Method: From 1991 to 1995, 2631 children (mean age = 9.6 ± 1.6 years) from a low socioeconomic area of Mexico City were screened for the D8/17 marker. In a 2- to 5-year follow-up of 240 of these children (108 positive and 132 negative), structured psychiatric interviews and rating scales were administered to the child and main caretaker. Assessments were conducted and scored blind to the child's D8/17 status.

Results: No association was seen between D8/17 positivity and tics or OCD.


Conclusion: This study failed to provide support for the generalized use of D8/17 as a marker of susceptibility to tics and OCD in a community sample.

bold added by me.

Haven't read the rest of it yet as I just woke up, but I wanted to at least post that information.

[Lara]

I'm probably way more excited about this than I should be, but we may be getting some answers and that's just such a novelty! I haven't seen the test results yet, but the Immunologist said she had low titers (I'm a little confused, because he said not ASO strep titers). So, now they're going to check her immune response to pneumovax. I checked out the pneumovax, and it is just the vaccine in saline-no thimerosol or any metals.

Peglem,
I didn't quite understand what you wrote. Is the Immunologist thinking that your daughter's immune system is underactive or overactive?

Why are they using pneumovax to check her immune response?

[peglem]

Lara, the immunologist is thinking underactive immune system, which is what I thought when I took her there. They will give her the pneumovax and then a month later check her titers and IGg response. We are trying to figure out why she is not fighting the strep infections and seems to not have an immune response (no fevers-only sometimes get a cough or running nose). Her symptoms are behavioral.

NT Legend, I did read your response, though I feel like I must have misunderstood, because I thought I answered. I believe you suggested colostrum. I do know what that is, but do not know specifically what it does for the immune system. I want to investigate so I can find out specifically what is going on and have it in her medical record so when I need help I don't have doctor's rolling their eyes at me when I explain that her lack of fever does not rule things out, or that her presentation is completely atypical, so we have to do detective work to find out what's really wrong. I hope I didn't offend you in anyway, because I really do appreciate your comments and input. I don't know as much about natural treatments as you do and have been very overwhelmed trying to find the right combos of supplements to help my child. Much of what I tried is a result of what has worked for others or what has been reported to be typical for autism, but I don't know how typical for autism my child is, so I'd like the information to make better decisions about treatment.

[Isabelle]

Lara, scientific mind. So there is not a relation between that antigen and Hyperactivity, OCD, tics/tourette and autism. Sad! At all events you couldn't treat the presence of that antigen I guess.

NT Legend wrote about colostrum and erased it? WHY?

My son Danny had jaundice after 24 hours and doctors at the time kept him away from me for 3 days. He was fed just sugar water and for whatever reason couldn't nurse and after a month of trying, (cracked nipples,impacted breasts) I had to gave up and bottle fed him. I guess he missed the mother's colostrum that is essential for the formation of the intestinal flora, their 1 billion bacteria population, immune system and nervous system.

Yes, colostrum was recommended in 2001 but I didn't like the idea of cow's colostrum, so I lost interest on it.

[Isabelle]

Ooooooh! :D I got it, took me a while, though :p :rolleyes:

[Isabelle]

Here is about colostrum according to the "La Leche League"
http://www.lalecheleague.org/FAQ/colostrum.html
My son missed a lot :(

[peglem]

Isabelle, take heart, there are plenty of bottle-fed babies w/ good intestinal flora and strong immune systems.

Hmmmm, Allie had jaundice/high bilirubin levels w/in the first day of her life, too. We did @ a week of phototherapy at home, though, so i could still nurse and she got better. They said her levels were high, but not dangerously so, but they wanted to remedy it, to prevent it getting worse.

[Lara]

peglem,
FYI
I know you're thinking it's maybe not related anymore, but I just read this elsewhere and thought I'd post it in case you'd not read it yet.

http://news.health.ufl.edu/story.aspx?ID=4347
Psychiatric symptoms, strep possibly linked in some children
University of Florida - Health Science Centre News .
John Pastor 02/06/2007

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T4S-4MFCW5N-4&_user=2245104&_coverDate=02%2F01%2F2007&_alid=536138358&_rdoc=1&_fmt=summary&_orig=search&_cdi=4982&_sort=d&_docanchor=&view=c&_ct=94&_acct=C000056718&_version=1&_urlVersion=0&_userid=2245104&md5=57031cd1014ae02e408c791c7c2f2a63

Biological Psychiatry
Volume 61, Issue 3 , 1 February 2007, Pages 279-284

Relationship of Movements and Behaviors to Group A Streptococcus Infections in Elementary School Children

Tanya K. Murphy, Lisa A. Snider, P. Jane Mutch, Elaine Harden, Annette Zaytoun, Paula J. Edge, Eric A. Storch, Mark C.K. Yang, Giselle Mann, Wayne K. Goodman and Susan E. Swedo

[peglem]

Lara, Thank you, I hadn't read those articles yet. Interesting.

I still believe its strep related, just not so sure its actually PANDAS or an autoimmune disorder. I thought it was great in the first article that they observed the children while they were standing in line, as that kind of thing-just standing around w/o engagement, is exactly when you'd be most likely to see the tics and movements. It makes me wonder, too. One year, as a kindergarten teacher, I had this group, that was just strangely...stimmy(for lack of a better word). So many had these little noises and rhythmic tapping and such. Five years later, when this group was in 4th grade, (I had moved to 4th grade by then), it was much the same, with some of them having developed full blown tourettes or OCD. It was the most challenging group I ever had-twice. I often wondered what made them so different than the other groups I had through the years....just pondering.

[Isabelle]

these are the latest 2007, conclusive? yes, strep could be behind tics, OCD and disruptive behaviours meaning, perhaps, aggressiveness and SIB.....

[Lara]

Peglem,
It might have just been chance, who knows, or there might have been some other unknown reason. I remember when my son was in Year 1 that there were other children who had tics, but they turned out to be transient tics of childhood and their tics actually went away completely within a matter of months.

I've seen it shown that from 5% to a high of 25% (5-25%) of children can have transient tics that go away within a year. Maybe you got the class with the 25%. :) The brain is developing very rapidly during those years. Plus, there are many, many reasons why a child can develop tics, and not all of them are primary tic disorders, some of them are secondary to other conditions.

Isabelle,
Yes, it was from 2006, but the one I read was published this past week from what I recall seeing. Conclusive? I don't think so yet lol I'd like to read the whole article when it's available though 'cause the abstract doesn't really say too much. I personally don't think that anything too much has been conclusive yet about any of the PANDAS studies, but they're working on it, and that's the good thing. I'm sure there's a small subset of people who this work will pertain to, but I don't believe for one moment that it's going to be shown that everyone with TS (for example) has some sort of genetic susceptibility to Strep.. causing problems.

Anyway, that's just my thoughts, and heck, what do I know. LOL I spent several years following that D8/17 B-cell marker research, 'cause I thought they'd finally uncovered a "key" that fit what my son had been through, with connections of it with Autism, Rheumatic Fever/Sydenham's Chorea, and Tourette Syndrome, but then that all went no-where, so I don't hold my breath waiting anymore.

[peglem]

Well, Allie got the Pneumovax today and I also got a copy of the labs run by the immunologist. Her neutrophils were slightly high(1 pont above range). The titers that the nurse reported as low were antibodies to 23 types of streptococcal pneumonia. Those are the ones the pneumovax covers. Also her IgG is low. IgA is w/in range-low as is IgM. IgE was also low. I'm not too sure what all this means, but I'm researching on it. If anyone knows anything about it, I'd be happy to profit from your knowledge!

[Isabelle]

perhaps,it just means that her immune system is not totally normal or not working as it should..... in my son's tests he had IgE high but, again it was considered 'normal'

[peglem]

Well, it looks as though she isn't fighting the strep infections-antibodies to strep are IgG. High IgE indicates allergic reaction-they stimulate histamine. The immune system is sooo complicated- hard to get my head around it. I don't know what low IgE means. Obviously no allergic reactions-but hers was lower than normal range.

[Isabelle]

trying to remember where,who wrote about something about autism and immune system.

Teresa Binstock, all about autism and their immune system and more, one example: "Immune Panels for Autism Spectrum Children" http://www.autisme.net/alerg-immun.html
this is better read http://members.jorsm.com/~binstock/tests.htm

"to infuse or not to infuse?" by Willis S. Langford on the front page "Immune 101"
http://www.geocities.com/aaa_list/infus.htm

[tgrimes]

Just trying to understand a couple things... what does low titer mean, that an antibody to a virus was found? Does that mean you have it now or before?
Is there such a thing as a high titer, and what would that mean?
Is this related to high white blood cell count?

[peglem]

I'll try to answer as best I can with my very, very imperfect knowledge of the immune system.
Just trying to understand a couple things... what does low titer mean, that an antibody to a virus was found?
I believe a low titer means that your body has not or is not producing antibodies sufficiently to protect you from infection. Antibodies are more or less specific for particular microbes.

Does that mean you have it now or before?

If you have titers to a particular microbe it means you have had some kind of exposure to it- either the actual disease or a vaccine or, I think in some cases, antibodies passed to you through your mother.

Is there such a thing as a high titer, and what would that mean?
Is this related to high white blood cell count?

Yes, a high titer would indicate active infection with the microbe that the particular antibody is coded to fight. Usually titers remain elevated for a period of time after infection as well. When they are checking for recent strep infections they test for ASO titers in the blood, which are antibodies to a toxin (I think) produced by the strep. Allie has has a few ASO tests- one, when she tested positive for step on a rapid strep test was very low, and another time, a few weeks after +rapid strep(after antibiotic was finished) she tested just slightly above normal range.

I think neutrophils may be a type of white blood cell, but I think titers are not white blood cells. They are the little things your immune system manufactures that attack invading cells. Titers have protein markers on the outside of the cell that "fit" the protein markers on the outside of the microbe(antigens), so they can attach and destroy.

Okay, I checked, and neutrophils are WBCs, they are phagocytic, (which means they actually engulf and digest microbes) and are likely to be high during a bacterial infection.

[peglem]

trying to remember where,who wrote about something about autism and immune system.

Teresa Binstock, all about autism and their immune system and more, one example: "Immune Panels for Autism Spectrum Children" http://www.autisme.net/alerg-immun.html
this is better read http://members.jorsm.com/~binstock/tests.htm

"to infuse or not to infuse?" by Willis S. Langford on the front page "Immune 101"
http://www.geocities.com/aaa_list/infus.htm


I've read this before. So much about autism and the immune system focusses on gut inflamation. Allie doesn't seem to have gut problems...When she was much, much younger, there were problems with cement poop but it has been many years since I've seen any poop problems other than just occaisional, and there was usually an explanation in her diet or medication. The problem always resolved when when those things were dealt with.

[tgrimes]

So, bacteria affect white cells and viruses affect antibodies?
Is there both a viral and bacterial strep?
I should go look this stuff up I guess.

[peglem]

So, bacteria affect white cells and viruses affect antibodies?

Well, not exactly. Antibodies attach to invading cells (those not marked as "self") to signal other elements of the immune system to destroy them, WBCs kill cells that are marked by antibodies...I think. I have to keep adding that because this is just my understanding of how it works and I'm none too secure in my knowledge.


Is there both a viral and bacterial strep?
I should go look this stuff up I guess.

All strep is bacterial. Viruses are a whole 'nother story and I don't know as much about them, because my focus has been on strep. But, viruses, I think, are not really even alive...just bits of DNA, and I'm not sure if they have antigens on the outside (not even sure they have a cell wall), so somehow the body has to detect its own cells that have been invaded by virus...

[tgrimes]

Wow, you really lost me at anitgens, but now you have piqued my interest in the virus topic.
Last time I read about viruses it was some article about the difference between regular viruses and the bird flu - mad cow type, and why they are of great concern. It was pretty interesting.

[peglem]

Wow, you really lost me at anitgens, but now you have piqued my interest in the virus topic.
Last time I read about viruses it was some article about the difference between regular viruses and the bird flu - mad cow type, and why they are of great concern. It was pretty interesting.

Isn't mad cow disease caused by prions? Are those viruses? I don't know, but it really all facinates me. Too bad I wasn't facinated by it when my mom wanted me to become a doctor. I'd love to become a doctor now, but, so little time-so many germs!

[Isabelle]

So many germs? Peglem, we have trillions of bacteria in our gut, bacteria is crawling on our skins :eek: we are made of bacteria :rolleyes: we have viruses from the moment we crawled out of the depth of the sea :D and we need them to produce for us vitamins and other nutrients so for our brains can function .....

What we need to do is to work into improving our immune system that is located in our guts.

When my daughter finished studying abnormal psychology she sold her books and I kept one "Blueprints", Solving the Mystery of Evolution by Maitland A. Edey and Donald C. Johanson.

I read it, even is pretty old by now, it explains in simple words what are we and what we came from, before we invented the toilet and the washing of hands to "kill" germs :D :D

I think we have become germ-phobics :D obsessed into killing our tiny little "friends" and they are not taking it sitting down, they are taking revenge :eek: becoming mega monsters....

[peglem]

I was just meaning that I don't really have time to study all the stuff I'd like to, germs, for example.

[gynwhyver]

Whew! I'm exhausted just reading about her "adventure". :) So strange about the elevator though...but hey, we all have our quirks.

Don't know if this will help or not but Medline defines a titer as:

a measurement of the amount or concentration of a substance in a solution. It usually refers to the amount of medicine or antibodies found in a patient's blood.

Blood titer measurements can be very helpful in determining medical treatment. Antibody titers can tell the doctor if the patient has immunity to diseases such as measles, small pox, and hepatitis. Medication titers can tell if a person is receiving too much medication.

Antigen: A substance recognized by the immune system as foreign or toxic which elicits an immune response. Antigens include bacteria, viruses, and chemicals. If the antigen is part of the body, it is called a self antigen. An antigen is any protein that can be recognized as foreign and that will generate an immune response.

This was an interesting website on bacteria, viruses, etc.: http://www.microbeworld.org/microbes/bacteria/.

The link between autoimmune anomalies and autism is fascinating. Definitely something I'll have to study more.

Best of luck with the testing results. Please let us know what you find out.

Take care,

Gwyn

[peglem]

This was an interesting website on bacteria, viruses, etc.: http://www.microbeworld.org/microbes/bacteria/.


Gwyn

Thanks for the site! I bookmarked it.

[tgrimes]

Yes, pretty interesting stuff... thanks for the website link.

[peglem]

Well the 4 weeks post pneumoxax bloodwork is back. The nurse called and said the antibodies are "slightly improved." So, they want to do another pneumovax and see if they can get them a bit higher. I asked if this vaccine is supposed to help her fight strep infections- she said it should help. She's had 2 infections since the 1st vaccine. And I'm sooo confused! If her immune system is not responding to many. many. many strep infections and only had a slight response to the pneumovax...what is another pneumovax going to do for her? But, I just talked to the nurse who was only delivering the doctors message. I guess I'm gonna have to ask to talk to the doctor, because I really don't understand the thinking here. I don't want to be a pain in the a$$ patient, but, I gotta know! Not only that, but, its hard to find a time when Allie either does not have an infection or is not on antibiotics to do the pneumovax. I think she may have another infection right now....pfffffff.

[Isabelle]

Well the 4 weeks post pneumoxax bloodwork is back. The nurse called and said the antibodies are "slightly improved." So, they want to do another pneumovax and see if they can get them a bit higher. I asked if this vaccine is supposed to help her fight strep infections- she said it should help. She's had 2 infections since the 1st vaccine. And I'm sooo confused! If her immune system is not responding to many. many. many strep infections and only had a slight response to the pneumovax...what is another pneumovax going to do for her? But, I just talked to the nurse who was only delivering the doctors message. I guess I'm gonna have to ask to talk to the doctor, because I really don't understand the thinking here. I don't want to be a pain in the a$$ patient, but, I gotta know! Not only that, but, its hard to find a time when Allie either does not have an infection or is not on antibiotics to do the pneumovax. I think she may have another infection right now....pfffffff.



you mean higher antibodies? a better response from her immune system?

[peglem]

you mean higher antibodies? a better response from her immune system?

I haven't seen the actual lab report, but, yes, antibodies are slightly higher than they were before the vaccine, but I'm guessing not high enough to be protective, or otherwise why would they want to revaccinate?