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Could Pandas be an infection instead of antibody attack?


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Hi

Our very intelligent LLMD thinks that a strep infection, not antibody attack, is the culprit in PANDAS.

He thinks it often co-exists with mycoplasma fermentans or lyme and takes up residence in the basal ganglia area of the brain. This is why antibiotics help some people as antibiotics would have no impact on antibodies. It makes sense. We have felt our kid is fighting something all along. Plus, most autoimmune blood tests are normal, which would further justify the thinking that an autoimmune attack is not present. In most cases, the ASO is elevated due to the constant non-stop infection. Anyways, that is his theory. Very hard to treat but he says melatonin is a must. Also, he is VERY AGAINST SSRIs as they throw more gasoline on the fire.

Take care.

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Hi - the only thing that would make me think this isn't the case is that our dd had an episode on the back of a fairly severe allergic reaction to a food. She is allergic to cashews and pistachios and had some at a school event. She hadn't had any PANDAS symptoms in the few months prior and within 12 hours of the food reaction, she was in a flare. It lasted a couple of weeks.

 

Now I could imagine that maybe some chronic infection (maybe in the brain) coupled with this new immune provocation may cause issues, so possibly I guess.

 

Dr T also thinks the auto-antibody theory is incorrect. He believes it is an issue that stems from an abberant fever response and protaglandins in the hypothalamus, I believe. I probably just murdered his theory but something along those lines. Maybe some chronic infection in that brain area could affect the functioning of the hypothalamus which has got its finger in many pies from appetite and behaviour to temperature regulation.

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How would this explain exposure flairs? We all have children who flair when a sibling or classmate gets sick, even though they may not in fact be sick themselfs. I always believed it was an over anxious immune system ( antibodies) which ramp up due to possible exposure. If there was a chronic infection there I don't see why a child would flair around others.

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I'm not sure I agree with the strep stuck in the basal ganglia theory either. My DS15 had an intestinal virus on Christmas Day and quickly slipped into some of his old ways - withdrawn, irritable, more OCD, unfocused, forgetful, much less personality. This lasted for over 2 weeks and he finally woke up yesterday his "old self." (Which technically for him, is really his "new" self since we have been treating infections - not just strep - for almost 2 years and he has been symptomatic since at least age 4)

 

When DS15 first got the PANDAS/PANS diagnosis, his ASO titers were high and after 8 months of oral antibiotics weren't working, we added IV antibiotics, IV antifungals and IV antivirals. This is when he really started to make progress. So my point is, it seems impossible that we are all only dealing with strep here. However, I do believe that in my son's case, strep triggers a much more dramatic PANDAS/PANS response more so than other antigens.

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Great post! Diffrent thoughts from doctors, researchers, parents etc. all contribute to finding an answer for our kids. We all may not agree with every opinion but taking a look at all possibilities is what will make progress. Even the nonbelievers in the medical world who have taken the time to decide why they do not believe can be a valuable(also a pain in the A'') tool. With out the naysayers the believers would not have to work as hard to prove what is the best treatment for our kids. It will take these doctors giving their all, to find answers.

 

Until we have 100% answers it would be nice if all of the medical community would be willing to look at the things that researchers have come up with so far. Ignoring our kids problems or covering them up with SSRI's will not make them go away. Our kids need help now!

 

The one thing that bothers me most is doctors who practice as if they do not believe because the head of their practice has decided that their practices protocol will be to not believe in PANDAS. A doctor who practices against something he believes in(because their boss tells them too) is not living up to their code of "Do no harm."

 

Being a good doctor is an unbelievably hard job and a huge responsibility. Doctors please do not make your decisions on treating or not treating an illness because your offices protocol book says so. Make decisions based on medical knowledge. "A good doctor is a leader not a follower."

 

Each PANDAS doctor may have a little diffrent course of treatment for our kids but thankfully they have spent much time and effort to come to their conclusions.

 

Thank you to all of the doctors, parents etc. for your effort to help our kids.

 

Your work will "lead" to answers

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Hi

Our very intelligent LLMD thinks that a strep infection, not antibody attack, is the culprit in PANDAS.

He thinks it often co-exists with mycoplasma fermentans or lyme and takes up residence in the basal ganglia area of the brain. This is why antibiotics help some people as antibiotics would have no impact on antibodies. It makes sense. We have felt our kid is fighting something all along. Plus, most autoimmune blood tests are normal, which would further justify the thinking that an autoimmune attack is not present. In most cases, the ASO is elevated due to the constant non-stop infection. Anyways, that is his theory. Very hard to treat but he says melatonin is a must. Also, he is VERY AGAINST SSRIs as they throw more gasoline on the fire.

Take care.

Why melatonin?

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Melatonin calms the brain according to our LLMD.

 

 

Hi

Our very intelligent LLMD thinks that a strep infection, not antibody attack, is the culprit in PANDAS.

He thinks it often co-exists with mycoplasma fermentans or lyme and takes up residence in the basal ganglia area of the brain. This is why antibiotics help some people as antibiotics would have no impact on antibodies. It makes sense. We have felt our kid is fighting something all along. Plus, most autoimmune blood tests are normal, which would further justify the thinking that an autoimmune attack is not present. In most cases, the ASO is elevated due to the constant non-stop infection. Anyways, that is his theory. Very hard to treat but he says melatonin is a must. Also, he is VERY AGAINST SSRIs as they throw more gasoline on the fire.

Take care.

Why melatonin?

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if PANDAS is an infection only, why would anti-inflamatories help some people? Or IVIG? all usual remedies for P are along the lines of resetting an immune system.

 

This is just my thought.

YOu can still have an infection even with calming inflamation.

For us steroid don't hold. Maybe that is why some ivigs don't work. The ivig don't get the immune system to its right place and the infection/load is still there.

Or if the steroid did work, then the load wasn't that high and the inflammation is just out of control due to original infection, then add abx , poor diets, no matter how good you think your diet is, chlorine, floride in water and other things disrupting the gut. So then you just need to bring inflamation down and not get it to reignite.

ie..if you have a bad fall, you get a bad sprain, cut, bruising.

But even if you don't fall again, but just keep bumping it, or irritating it in any minor fashion, the injury will not heal.

 

On note with some of this, i found a Dr who deals with nurtrition as a way to healing, and health. I was trying to find someone in relation to what i was doing food and suppliment wise.

We did an ALCat test with him and ds is leaky gut all over the place.

We are eliminateing those foods as well as all of the known foods that cause itchy mouth.

Hoping to see more progress!!

What i wanted to say is that i like this man, as for the fact that he believes in everything ds has gone through and respects my understanding.

He thinks that there is no doubt that ds has chronic infection, based on some labs, and thinks that he probably has other infecttions that our current, human technology, cannot measure. He believes that these infections are smart and after a few rounds of abx, go deeper into the body where abx cannot get to them. He thinks it is likely ds still has strep that does not blood test.

I find it fascinating that this DR, who can prescibe any med, though may not based on his understanding of long term effects, but willing to work with my drs, said that about strep. I muscle tested ds with a second ART DR,(i have 2) and ds does muscle test for strep.(no pos labs at this time)

Anyway this Nutrition Dr, thinks that once the body is in biosis, ds' body will shed the infections and metals on its own.

He is looking into other things to aid in ds recovery. Be it i.v. glutithion or such.

If somone in atlanta area needs a good starting point, i think this dr would be of value. I really believe the gut is the place to start.

ALso this dr seems to be very interested in helping my DS.

So we shall see. Wish us WELL!

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FYI-

In the Mouse Model - they don't just give the mice the antibodies (or autoantibodies) They also give the mice a form of epinephrine - a stress hormone similar to adrenaline - to OPEN THE BBB.

 

Without that the experiment does not work. Because antibodies are too large to cross the BBB. But we also know from Cunninham's research that the CNS fluid of pandas kids contains these autoantibodies - so somehow, they are crossing the BBB.

 

The mouse model actual points to TWO causes for pandas - autoantibodies and a "leaking" BBB. I didn't really consider how important that second part was until I saw Mady Horning present her mouse study in person. A light bulb went for me.

 

The way the immune system works - if it finds an antigen - it will keep asking for more and more of the antibody to that antigen. With our kids, it seems it keeps finding the antigen (their neuronal tissue) so it keeps making more and more of the autoantibody.

 

But how and why is the BBB opening? Some research suggests that recurrent infection and chronic infections for some unknown reason, cause the BBB to break down. Its is not, as far as I know, "just" inflamation - but I think is impacted by the inflamatory response, makes it worse, which is why anti inflamatories help somewhat.

 

Can the actual infection also cross into the brain? I think that would present as more typical - menningitis. But, who knows? I do know for sure that the autoantibodies are crossing over. I would think that Swedo checked the CNS for the strep bacteria (and I'm sure she is in this study).

 

MS is an autoimmune disease that seems similar - here is wiki page on the BBB and its reference to MS

"Multiple sclerosis (MS) is considered to be an auto-immune and neurodegenerative disorder in which the immune system attacks the myelin that protects and electrically insulates the neurons of the central and peripheral nervous systems. Normally, a person's nervous system would be inaccessible to the white blood cells due to the blood–brain barrier. However, magnetic resonance imaging has shown that when a person is undergoing an MS "attack," the blood–brain barrier has broken down in a section of the brain or spinal cord, allowing white blood cells called T lymphocytes to cross over and attack the myelin. It has sometimes been suggested that, rather than being a disease of the immune system, MS is a disease of the blood–brain barrier.[21] A recent study suggests that the weakening of the blood–brain barrier is a result of a disturbance in the endothelial cells on the inside of the blood vessel, due to which the production of the protein P-glycoprotein is not working well.[citation needed]

There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier.[22]"

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FYI-

In the Mouse Model - they don't just give the mice the antibodies (or autoantibodies) They also give the mice a form of epinephrine - a stress hormone similar to adrenaline - to OPEN THE BBB.

 

Without that the experiment does not work. Because antibodies are too large to cross the BBB. But we also know from Cunninham's research that the CNS fluid of pandas kids contains these autoantibodies - so somehow, they are crossing the BBB.

 

The mouse model actual points to TWO causes for pandas - autoantibodies and a "leaking" BBB. I didn't really consider how important that second part was until I saw Mady Horning present her mouse study in person. A light bulb went for me.

 

The way the immune system works - if it finds an antigen - it will keep asking for more and more of the antibody to that antigen. With our kids, it seems it keeps finding the antigen (their neuronal tissue) so it keeps making more and more of the autoantibody.

 

But how and why is the BBB opening? Some research suggests that recurrent infection and chronic infections for some unknown reason, cause the BBB to break down. Its is not, as far as I know, "just" inflamation - but I think is impacted by the inflamatory response, makes it worse, which is why anti inflamatories help somewhat.

 

Can the actual infection also cross into the brain? I think that would present as more typical - menningitis. But, who knows? I do know for sure that the autoantibodies are crossing over. I would think that Swedo checked the CNS for the strep bacteria (and I'm sure she is in this study).

 

MS is an autoimmune disease that seems similar - here is wiki page on the BBB and its reference to MS

"Multiple sclerosis (MS) is considered to be an auto-immune and neurodegenerative disorder in which the immune system attacks the myelin that protects and electrically insulates the neurons of the central and peripheral nervous systems. Normally, a person's nervous system would be inaccessible to the white blood cells due to the blood–brain barrier. However, magnetic resonance imaging has shown that when a person is undergoing an MS "attack," the blood–brain barrier has broken down in a section of the brain or spinal cord, allowing white blood cells called T lymphocytes to cross over and attack the myelin. It has sometimes been suggested that, rather than being a disease of the immune system, MS is a disease of the blood–brain barrier.[21] A recent study suggests that the weakening of the blood–brain barrier is a result of a disturbance in the endothelial cells on the inside of the blood vessel, due to which the production of the protein P-glycoprotein is not working well.[citation needed]

There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier.[22]"

 

Thanks for that summary, It helped me to better understand the theory, and make sense of it all. I have also heard certain antihistamines may also strengthen the bbb. My son is taking Visteril which I believe is helping.

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