Could Pandas be an infection instead of antibody attack?

[T_Mom]

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?

[T_Mom]

I am going right out to get myself some...

[tpotter]

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]"

 

Norcalmom, you pose a good question...how and why is the bbb opening? Personally, I think it has something to do with infection and/or environmental triggers PLUS immunizations (at least in some kids.) Immunizations are not supposed to be given when a person is ill, but doctors either do not realize that the children are ill, or they tell the parents that it doesn't matter. I have heard this over and over again from other parents, and also know it to be the case with my own children (they are now not allowed to get any more vaccines.) DS20 (when he was 18 months) had a severe allergic reaction to the MMR (broke out in hives.) I was NEVER told to either watch out for other reactions or to avoid immunizations in the future, and I was also never asked if my children were sick before giving them, sometimes multiple vaccinations simultaneously (it's even worse now.) DS20 ended up having Asperger's Syndrome, but was not diagnosed until he was in middle school (he had symptoms all along...constantly misdiagnosed with ADHD and bipolar, though.) After starting treatment, and actually doing something as dramatic as giving him IVIG (which decreased inflammation,) his social skills jumped 7 years overnight. That's when I knew that the "asperger's" was actually PANS (multiple infections, and immune system issues!)

 

And, in answer to the original question, I have sometimes wondered the same myself. But, the research does seem to point to it being the antibodies, and not the infection.

[dcmom]

I am a believer in the autoimmune theory. I have seen my kids recover with lightning speed from PEX- which removes the antibodies from the blood. It does not in any way treat infection. They both had lasting results from pex.

[norcalmom]

I think its failure of the BBB. Drittan Agalliu is writtng a paper (acording to his web page bio) about failure of tight junctions of the BBB in mice in state of infection. He's presented these findings at two of the last conferences, including the one he hosted. He researches BBB junctions in stroke victims, and became involved after being asked if he would look at the BBB in mice that got infections (strep).

 

The SYMPTOMS are due to the excess of autoanitbodies (so removing them, via PEX will remove symptoms). IVIG will also reset and correct them.

 

The CAUSE of the excess autoantibodies - in my opinion - is the failure of the BBB. The immune system will make more and more autoantibodies as long as it is finding the antigen - these autoantibodies are found in normal kids, but in half the amount as our kids. Why are our kids higher? Because the immune system works on a feedback loop. It LEARNS to make antibodies based upon what it finds. If your junctions in the BBB are tight - these antibodies can't get in in to find neuronal tissue. If the BBB is "leaking", the antibodies get into the brain, and find their target, and send signals back to make more antibodies for this target.

 

Heres the catch 22 - the BBB opens up from adrenaline. We've all see the dialated pupils, the look of fight or flight present in our kids eyes, nightmare and anxiety.... Once the BBB opens, the auto-antibodies attack basil ganglia causing that fear response our kids have - which releases MORE adrenaline ...Which opens the BBB....

 

I think we may be able to break the kids into two groups.

Kids who's BBB is open, but not normal. They get IVIG or PEX, and they get better. Removing the autoantibodies stops the catch 22. The feedback loop is broken and the BBB closes. As long as the child does not get infection moving forward - and even if they do as long as the infection is properly treated in a time manner they will be OK, but may be prone to pandas relapse - because their immune system has already had a taste of neuronal tissue and will be quick to generate more anti-neuronals as soon as the BBB has even the most modest leak.

And

The Chronic leakers - damaged BBB or chronically leaking BBB due to infection - or other abnormality. Those kids do not get better, or relapse after IVIG or PEX. Why are they "leaking"? Do they still have the intial infection? Infection of the actual BBB? Possibly damage to the BBB? Inflamation in the body that is effecting the BBB (from an infection elsewhere?) Maybe they are making auto-antibodies against their BBB.

[MomWithOCDSon]

The SYMPTOMS are due to the excess of autoanitbodies (so removing them, via PEX will remove symptoms). IVIG will also reset and correct them.

 

The CAUSE of the excess autoantibodies - in my opinion - is the failure of the BBB. The immune system will make more and more autoantibodies as long as it is finding the antigen - these autoantibodies are found in normal kids, but in half the amount as our kids. Why are our kids higher? Because the immune system works on a feedback loop. It LEARNS to make antibodies based upon what it finds. If your junctions in the BBB are tight - these antibodies can't get in in to find neuronal tissue. If the BBB is "leaking", the antibodies get into the brain, and find their target, and send signals back to make more antibodies for this target.

 

Heres the catch 22 - the BBB opens up from adrenaline. We've all see the dialated pupils, the look of fight or flight present in our kids eyes, nightmare and anxiety.... Once the BBB opens, the auto-antibodies attack basil ganglia causing that fear response our kids have - which releases MORE adrenaline ...Which opens the BBB....

 

I think we may be able to break the kids into two groups.

Kids who's BBB is open, but not normal. They get IVIG or PEX, and they get better. Removing the autoantibodies stops the catch 22. The feedback loop is broken and the BBB closes. As long as the child does not get infection moving forward - and even if they do as long as the infection is properly treated in a time manner they will be OK, but may be prone to pandas relapse - because their immune system has already had a taste of neuronal tissue and will be quick to generate more anti-neuronals as soon as the BBB has even the most modest leak.

And

The Chronic leakers - damaged BBB or chronically leaking BBB due to infection - or other abnormality. Those kids do not get better, or relapse after IVIG or PEX. Why are they "leaking"? Do they still have the intial infection? Infection of the actual BBB? Possibly damage to the BBB? Inflamation in the body that is effecting the BBB (from an infection elsewhere?) Maybe they are making auto-antibodies against their BBB.

 

Hmmm. Makes sense. I remember reading somewhere, also, that anxiety and stress (maybe medically that was adrenaline, too) contribute to a porous BBB. When our DS was really ill, it just seemed like an insane merry-go-round, much as you've described. He'd feel anxious, and his behavior would escalate, and then he'd get more anxious because of the increased behaviors, and on and on. Once that information came our way about the BBB, we made it a priority to quiet and slow things down whenever we could, hoping that would help terminate the cycle. I do think it helped.

[Fixit]

 

The Chronic leakers - damaged BBB or chronically leaking BBB due to infection - or other abnormality. Those kids do not get better, or relapse after IVIG or PEX. Why are they "leaking"? Do they still have the intial infection? Infection of the actual BBB? Possibly damage to the BBB? Inflamation in the body that is effecting the BBB (from an infection elsewhere?) Maybe they are making auto-antibodies against their BBB.

 

Oh Gosh...i hope that last sentence is not even a possibility...pew, pew, peh, peh(that's spitting)

But yah... i think something along the lines of this is happening

[rowingmom]

The Chronic leakers - damaged BBB or chronically leaking BBB due to infection - or other abnormality. Those kids do not get better, or relapse after IVIG or PEX. Why are they "leaking"? Do they still have the intial infection? Infection of the actual BBB? Possibly damage to the BBB? Inflamation in the body that is effecting the BBB (from an infection elsewhere?)

Perhaps this is why some children with unrecognized/untreated lyme and co are relapsing after IVIG. DD11 did have some symptoms of meningitis before treatment - stiff/painful neck at the base of the skull, along with asperger's type behaviours. Her bartonella pain/PANS symptoms really escalated after a stressful family incident (lots of adrenalin) - perhaps opening her BBB.

[norcalmom]

I agree that that Lyme can cause it. Cunningham has already said that Lyme infection will make Cam K and antineuonals go way up (and anecdotally I think I recall hearing at one point that the Lyme folks were higher that Pandas kids...but can't verify that). And of everything we read, infection of various types need to be fully treated for IVIG to fully take care of things. Notice I didn't say "work". Because my son had an underlying infection, and had IVIG twice, and he got ALOT better. Not 100%. But he has never gotten as bad as prior to the first IVIG. I consider those two IVIG's to have worked.

 

If I think of all the anecdotal evidence I've heard over the years I know a number of "very" sudden onset kids - were set off by an extremely stressful or unusual event, not all of them, but enough to make me think it supports the BBB adrenaline theory. They had strep too of course, but I think these are the folks with the kids that can pin point the minute there kid became ill. Personally I think the pandas was there at a low level already, and with the quick opening of the BBB - "sudden onset". A very small leak becomes a burst damn.

 

And I feel like the little Dutch boy with his finger in the hole!

[philamom]

My daughter's Cam K was on the lower end (136 if I recall) but her antineuronals were way up. She has lyme - positive through Igenex & positive culture with Advanced Lab, negative CDC. The Cam K was done in 2009, a year after her tick bite. But who knows, she may have had lyme before the tick bite. I tested positive with Igenex as well. She did a steroid burst before the Cam K test so not sure what effect it had on the results.

 

I like this thread and reading of the possible theories. Thanks.

Edited January 10, 2013 by philamom