Question re: BBB and Symptoms

[Suzan]

I'm not grasping something about why pandas is ongoing. If the strep or other virus/bacteria crosses the BBB and causes the symptoms, after getting rid of the strep, etc. and the BBB closes, why would the symptoms continue? Also, why would opening the BBB due to stress/allergies/exaustion for example, start the symptoms up again, assuming an absence of the strep, etc.

 

Am I missing something elementary? Is the initial episode the trigger which starts the autoimmune process and that is what the antibiotics/IVIG tries to correct?

 

dd8 is overdoing it with her current schedule. I am seeing new things pop up like last night she had her hands held with the backs of her hands together up against her chest. She knew she was doing it and said she could not help it. She was in a highly aggitated state from being so tired. We are trying to make it through 3 more weeks of swim team. It's probably not a good idea to continue.

 

Susan

[ajcire]

Glad you asked. I'm not understanding this brain barrier stuff either but I thought I was the only one.

[justinekno]

Nope, I'm there too! Hopefully some veterans will help us understand.

 

Glad you asked. I'm not understanding this brain barrier stuff either but I thought I was the only one.

[trggirl]

I don't have an answer to your question, but I can say that my daughter is the same way. We manage her symptoms by controlling her schedule and controlling her sleep. It is absolute key to not stress her out. Unfortunately, this means she can't do extracurricular activities. We have tried over and over, but it really means the difference between her getting by and her going downhill. It's just not worth it.

[Phasmid]

I'm no expert, but I think it is not necessarily the antigen itself that crosses the BBB, but that there is a hyper-immune response and antibodies that do cross the BBB are the problem, as these antibodies bind to perceived antigen... brain tissue, due to molecular mimicry. The antibodies think that, since they have been on patrol for so long and have become "trigger happy" so to speak, they should attack anything that has any resemblance to what they have been attacking.

 

If antigen itself crosses, i.e., bacteria, then you have an infection. There have been some cases of Mycoplasma that have involved direct invasion of the central nervous system and can be detected in the cerebrospinal fluid.

 

Inflammation is what causes the BBB to "open." The BBB is the membrane of capillaries that prevents circulating blood from mixing with cerebrospinal fluid. Think of it as a microscopic "sieve" where the holes allow some things through, but prevent other things from passing. Well, if those pores become larger due to inflammation, larger things (proteins, etc) that normally couldn't pass through, now can.

 

It's all about persistent inflammation, and the persistence of circulating antibodies. They circulate through the body for a VERY long time... months or years. It is the concentration of antibodies that is a real problem. That is why plasmapheresis works so well... it is an instant "dilution" of blood which is circulating a concentration of antibodies.

Edited June 30, 2010 by Phasmid

[Fixit]

I'm no expert, but I think it is not necessarily the antigen itself that crosses the BBB, but that there is a hyper-immune response and antibodies that do cross the BBB are the problem, as these antibodies bind to perceived antigen... brain tissue, due to molecular mimicry. The antibodies think that, since they have been on patrol for so long and have become "trigger happy" so to speak, they should attack anything that has any resemblance to what they have been attacking.

 

If antigen itself crosses, i.e., bacteria, then you have an infection. There have been some cases of Mycoplasma that have involved direct invasion of the central nervous system and can be detected in the cerebrospinal fluid.

 

Inflammation is what causes the BBB to "open." The BBB is the membrane of capillaries that prevents circulating blood from mixing with cerebrospinal fluid. Think of it as a microscopic "sieve" where the holes allow some things through, but prevent other things from passing. Well, if those pores become larger due to inflammation, larger things (proteins, etc) that normally couldn't pass through, now can.

 

It's all about persistent inflammation, and the persistence of circulating antibodies. They circulate through the body for a VERY long time... months or years. It is the concentration of antibodies that is a real problem. That is why plasmapheresis works so well... it is an instant "dilution" of blood which is circulating a concentration of antibodies.

 

That was well done....i think dcom or someone wrote something abot a month or 2 ago that was good too...

and to add if you didn't get part of it is...even if the infectioon or trigger is cleared...the body hasn't stopped fighting

as in my ds...when he was infected w/ strep and we cleared it ...he would completely heal..

but now...maybe too many infections coupled with purberty...his system just wont stop....i believe we have cleared all infections...trying a couple more things...

NOw we have to get the inflammation down....

doc t likens it to an asthma attack..the body needs help in slowing down...

[Suzan]

Thanks, those responses do help. I am very concerned about the swim team I have her on. All that chlorine and the harsh schedule. I think she found her sport. I hate to take her out. She will hate me but I can't continue with her like this. IVIG is Friday.

 

Susan

[Fixit]

Thanks, those responses do help. I am very concerned about the swim team I have her on. All that chlorine and the harsh schedule. I think she found her sport. I hate to take her out. She will hate me but I can't continue with her like this. IVIG is Friday.

 

Susan

 

yes excitement does flare things...

maybe just take her for casual swims...and moderate swimming techniques to keep her ready for when she can handle the competitions better....

May the roads rise to me you on this journey....Good thoughts coming your way on FRIday!!!

[kimballot]

I'm no expert, but I think it is not necessarily the antigen itself that crosses the BBB, but that there is a hyper-immune response and antibodies that do cross the BBB are the problem, as these antibodies bind to perceived antigen... brain tissue, due to molecular mimicry. The antibodies think that, since they have been on patrol for so long and have become "trigger happy" so to speak, they should attack anything that has any resemblance to what they have been attacking.

 

If antigen itself crosses, i.e., bacteria, then you have an infection. There have been some cases of Mycoplasma that have involved direct invasion of the central nervous system and can be detected in the cerebrospinal fluid.

 

Inflammation is what causes the BBB to "open." The BBB is the membrane of capillaries that prevents circulating blood from mixing with cerebrospinal fluid. Think of it as a microscopic "sieve" where the holes allow some things through, but prevent other things from passing. Well, if those pores become larger due to inflammation, larger things (proteins, etc) that normally couldn't pass through, now can.

 

It's all about persistent inflammation, and the persistence of circulating antibodies. They circulate through the body for a VERY long time... months or years. It is the concentration of antibodies that is a real problem. That is why plasmapheresis works so well... it is an instant "dilution" of blood which is circulating a concentration of antibodies.

 

This is my understanding as well. I think the B cells in the immune system have some memory and they are what make antibodies. It only takes a couple of B cells to cross the BBB and get to the basal ganglia -they see the surface of the basal ganglia cells and think it is strep (because it looks like strep), so they produce the strep antibodies that they remember. Unfortunately, these antibodies bind to the neurons and mess up the neurotransmitters that are produced (Cam kinase II & Dopamine).

 

.... at least I think that is how it goes...

[Fixit]

.

 

This is my understanding as well. I think the B cells in the immune system have some memory and they are what make antibodies. It only takes a couple of B cells to cross the BBB and get to the basal ganglia -they see the surface of the basal ganglia cells and think it is strep (because it looks like strep), so they produce the strep antibodies that they remember. Unfortunately, these antibodies bind to the neurons and mess up the neurotransmitters that are produced (Cam kinase II & Dopamine).

 

.... at least I think that is how it goes...

 

 

SEE...this is why i obsesse?/ about reading here as much as i can.....i get these ah ha moments...

THANK YOu For posting this!!!!!

[Buster]

Hi Suzan,

 

PANDAS is thought to be due to an auto-immune response and not due to strep antigens crossing the BBB.

 

Antibodies have (in general) a 28 day half life. This means that once the trigger is gone, the antibodies go down by 1/2 in 28 days then are about 1/4th as strong in 56 days and then 1/8th as strong in 84 days etc. The exact half-life isn't perfectly known but it looks like 28 days is about right.

 

Okay, so what you really have are three independent events:

1. an abnormal immune response to a bacterial infection triggering B-cells to produce anti-neuronal antibodies
   
2. a failure to "recognize self" and suppress the anti-neuronal antibodies
   
3. a breach in the BBB that allows the anti-neuronal antibodies to reach the neuronal tissue
   

So assume you get the BBB closed, well the antibodies will keep circulating for typically 3 months. Another opening of the BBB during that time would start the whole cycle again. Remember that antibodies continue to generate as long as the target is found -- this is why auto-immune diseases are so problematic.

 

The BBB can be breached a number of ways. High stress can cause a breach. An infection can cause a breach. Even high epinephrine can trigger a breach.

 

Then you wait around till *both* the infection or issue keeping the BBB open is treated, the BBB closes, and the antibodies dissipate that have already crossed *and* you don't get another trigger.

 

Hope that helps as an explanation,

 

Buster

 

 

 

 

I'm not grasping something about why pandas is ongoing. If the strep or other virus/bacteria crosses the BBB and causes the symptoms, after getting rid of the strep, etc. and the BBB closes, why would the symptoms continue? Also, why would opening the BBB due to stress/allergies/exaustion for example, start the symptoms up again, assuming an absence of the strep, etc.

 

Am I missing something elementary? Is the initial episode the trigger which starts the autoimmune process and that is what the antibiotics/IVIG tries to correct?

 

dd8 is overdoing it with her current schedule. I am seeing new things pop up like last night she had her hands held with the backs of her hands together up against her chest. She knew she was doing it and said she could not help it. She was in a highly aggitated state from being so tired. We are trying to make it through 3 more weeks of swim team. It's probably not a good idea to continue.

 

Susan

[Suzan]

Hi Suzan,

 

PANDAS is thought to be due to an auto-immune response and not due to strep antigens crossing the BBB.

 

Antibodies have (in general) a 28 day half life. This means that once the trigger is gone, the antibodies go down by 1/2 in 28 days then are about 1/4th as strong in 56 days and then 1/8th as strong in 84 days etc. The exact half-life isn't perfectly known but it looks like 28 days is about right.

 

Okay, so what you really have are three independent events:

1. an abnormal immune response to a bacterial infection triggering B-cells to produce anti-neuronal antibodies
   
2. a failure to "recognize self" and suppress the anti-neuronal antibodies
   
3. a breach in the BBB that allows the anti-neuronal antibodies to reach the neuronal tissue
   

So assume you get the BBB closed, well the antibodies will keep circulating for typically 3 months. Another opening of the BBB during that time would start the whole cycle again. Remember that antibodies continue to generate as long as the target is found -- this is why auto-immune diseases are so problematic.

 

The BBB can be breached a number of ways. High stress can cause a breach. An infection can cause a breach. Even high epinephrine can trigger a breach.

 

Then you wait around till *both* the infection or issue keeping the BBB open is treated, the BBB closes, and the antibodies dissipate that have already crossed *and* you don't get another trigger.

 

Hope that helps as an explanation,

 

Buster

 

Yes, very helpful (Kim, you too). Thank you. I know you have posted this stuff before, I guess my brain has finally learned enough I'm goingto the next phase, LOL.

 

Although, I am feeling more distraught learning all this. I am having trouble seeing how it's going to get better.

 

Susan

[kimballot]

Hi Suzan,

 

PANDAS is thought to be due to an auto-immune response and not due to strep antigens crossing the BBB.

 

Antibodies have (in general) a 28 day half life. This means that once the trigger is gone, the antibodies go down by 1/2 in 28 days then are about 1/4th as strong in 56 days and then 1/8th as strong in 84 days etc. The exact half-life isn't perfectly known but it looks like 28 days is about right.

 

Okay, so what you really have are three independent events:

1. an abnormal immune response to a bacterial infection triggering B-cells to produce anti-neuronal antibodies
   
2. a failure to "recognize self" and suppress the anti-neuronal antibodies
   
3. a breach in the BBB that allows the anti-neuronal antibodies to reach the neuronal tissue
   

So assume you get the BBB closed, well the antibodies will keep circulating for typically 3 months. Another opening of the BBB during that time would start the whole cycle again. Remember that antibodies continue to generate as long as the target is found -- this is why auto-immune diseases are so problematic.

 

The BBB can be breached a number of ways. High stress can cause a breach. An infection can cause a breach. Even high epinephrine can trigger a breach.

 

Then you wait around till *both* the infection or issue keeping the BBB open is treated, the BBB closes, and the antibodies dissipate that have already crossed *and* you don't get another trigger.

 

Hope that helps as an explanation,

 

Buster

 

Buster - I want to see if I have this right - If a person with PANDAS has an infection that causes a strep reaction, and then has a 3 month period of no infection / no inflammation / not crossing of the BBB... Then has a new infection / inflammation and opening of the BBB after the 3 month period with no active antibodies circulating in the blood...

 

Could T cells and B cells enter the basal ganglia - and still produce strep antibodies from memory.... or do you have to have an active strep antibody that crosses over. (I serously hope that made sense) - Here is a website that describes what I am thinking a bit better http://www.cellsalive.com/antibody.htm

[peglem]

Hi Suzan,

 

PANDAS is thought to be due to an auto-immune response and not due to strep antigens crossing the BBB.

 

Antibodies have (in general) a 28 day half life. This means that once the trigger is gone, the antibodies go down by 1/2 in 28 days then are about 1/4th as strong in 56 days and then 1/8th as strong in 84 days etc. The exact half-life isn't perfectly known but it looks like 28 days is about right.

 

Okay, so what you really have are three independent events:

1. an abnormal immune response to a bacterial infection triggering B-cells to produce anti-neuronal antibodies
   
2. a failure to "recognize self" and suppress the anti-neuronal antibodies
   
3. a breach in the BBB that allows the anti-neuronal antibodies to reach the neuronal tissue
   

So assume you get the BBB closed, well the antibodies will keep circulating for typically 3 months. Another opening of the BBB during that time would start the whole cycle again. Remember that antibodies continue to generate as long as the target is found -- this is why auto-immune diseases are so problematic.

 

The BBB can be breached a number of ways. High stress can cause a breach. An infection can cause a breach. Even high epinephrine can trigger a breach.

 

Then you wait around till *both* the infection or issue keeping the BBB open is treated, the BBB closes, and the antibodies dissipate that have already crossed *and* you don't get another trigger.

 

Hope that helps as an explanation,

 

Buster

 

Buster - I want to see if I have this right - If a person with PANDAS has an infection that causes a strep reaction, and then has a 3 month period of no infection / no inflammation / not crossing of the BBB... Then has a new infection / inflammation and opening of the BBB after the 3 month period with no active antibodies circulating in the blood...

 

Could T cells and B cells enter the basal ganglia - and still produce strep antibodies from memory.... or do you have to have an active strep antibody that crosses over. (I serously hope that made sense) - Here is a website that describes what I am thinking a bit better http://www.cellsalive.com/antibody.htm

So, are you asking if the immune system will produce autoantibodies in the absence of strep, to the basal ganglia, because it mistakes something there as strep antigen? That's a great question!

[kimballot]

So, are you asking if the immune system will produce autoantibodies in the absence of strep, to the basal ganglia, because it mistakes something there as strep antigen? That's a great question!

 

Peg - yes - thank you - that is EXACTLY what I was trying to say! You are so articulate~!