PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. A common presentation may be rapid onset of obsessive-compulsive behavior (OCD) and/or tic disorders. Other common symptoms include a major change in personality and behavior, emotional lability (dramatic ups and downs with emotions), return of bed wetting after having been dry for awhile, anxiety, agoraphobia (not wanting to leave the house), refusal to go to school, fearfulness, refusal to eat anything other than a couple specific foods or refusal to eat at all, nightmares, deterioration in handwriting, separation anxiety, panic attacks, visual or auditory hallucinations, sensitivities to light/sound/touch and repetitive behaviors. This follows a strep throat infection.
I just read a front page article in the New York Times today about a horrific disease in Africa. It was about simple strep throats, caused by streptococcus bacterial infections, which are not tested for and treated like they should be. Because of this, many people go on to develop Rheumatic Heart Disease. This is an autoimmune disease (AD) that attacks the valves of the heart. They go on to develop congestive heart failure and die.
Money is not available to pay for the strep throat swab tests like we have in the US or most places in developed nations. Africa also doesn’t have penicillin available to treat the simple strep throat. The infection just keeps rolling along, even after the sore throat is gone, trying to create new problems such as the Autoimmune Disease Rheumatic Heart Disease.
The article suggests that this doesn’t happen in the US due to being able to test for the infection and treat it early with Penicillin.
They are right about rheumatic heart disease. But not quite correct when it comes to the autoimmune disease PANDAS.
In PANDAS, typically an autoimmune disease of childhood, a person gets a simple strep throat. As you will see though, it is not always so simple. The symptom is a sore throat. It could be a bad sore throat or almost no soreness at all. The sore throat may go away on its own. If bad enough, a swab of the back of the throat is done and when the result is positive antibiotics are used and the sore throat goes away completely. But what might not go completely away is the strep bacteria itself.
It may lie quiet. Our immune system is working to keep it suppressed so it can’t bother us. When our immune system is a bit weakened, it can lose control of the bugs still remaining in our body and the person gets a “new” case of strep throat. A new sore throat. A new positive strep test and a new antibiotic. This can happen over and over again. The record for me is seeing a teenager who had had almost 100 strep throats treated with antibiotics before PANDAS symptoms began to set in.
Or, a dysfunctional immune system may be allowing a new strep infection to keep getting in the body over and over again. These bugs, and many others which can contribute to other kinds of autoimmune disease, are all over our environment everywhere we go. Just like the cold and flu viruses. In our schools, homes, stores etc…As we discussed in a previous blog, chronic infections are big drivers of autoimmune disease.
A healthy immune system doesn’t let these bugs get in, set up shop, and make us feel poorly. So some people do get rid of the strep bug totally with the antibiotics. But, the dysfunctional immune system lets it keep coming back in over and over again.
Unfortunately, the antibiotics disrupt the gut. The intestinal microbiome as well as specific functions of the gut. The gut disruption causes issues with the immune system because 80% of the immune system actually surrounds the gut. This can cause an “intestinal permeability disorder”. Historically, and more commonly, this is referred to by some people as a “leaky gut”.
When this happens, it can cause a “leaky” blood brain barrier (BBB). This BBB keeps the brain and the body separate. It is designed to keep the brain happy and functioning well no matter what kind of mess might being going on in our “body” at the moment. The leaky BBB will then allow infections to get from the body to the brain thus dragging the brain down. Strep being only one of the bugs that should never be able to make it’s way into the brain.
Also, bad bugs can also get into the brain another way. Many of us may have heard the gut called “the second brain.” The gut has to do so much to keep the brain healthy. But it is starting to look like the gut may actually be the “first brain.” There are hundreds, if not thousands of times more connections going from the gut to the brain then from the brain to the gut.
We have historically known that the Vagus nerve is a big “highway” that allows information from the brain to get down to not only our breathing muscles, but also our gut. We are now seeing that the Vagus nerve is a bit of a two way street. Bad bugs will actually crawl up the Vagus nerve from the gut in order to get into our brains. Almost like a ladder from the gut to the brain. These bugs then cause trouble for the brain.
PANDAS symptoms are truly devastating for the person and their families. They tend to get worse and worse until the young person can’t go to school. Can’t leave their own homes. Can’t interact with their families. Eventually, they might not even leave their own bedrooms until everyone else has gone to bed at night.
But it is not just strep throat and the streptococcus bacteria that creates the problem. When one bad bug gets in and causes a problem, you know other bugs have gotten in as well. It’s like a big party. The bugs get in and say, “Come on everybody! Let’s all get in and really mess this person up!” It’s a big toxic soup.
Testing for these bugs and treating the infections can be very tricky. They like to hide from our immune system. Thus, our immune system can’t find them and get rid of them easily. This is also why typical tests for these bugs often are negative, even if the person does truly have the infection. The immune system won’t make antibodies against a bug it can’t find. We tend to test by looking for antibodies.
Or an infection like strep is so common, most people have some antibodies produced from past infections already. But when tested, after PANDAS has started, the antibody titers are a lot higher than they should be for just having seen the bug in the past and standing ready in case it wants to come back.
Other bugs that need to be tested include Epstein-Barr Virus (EBV), Lyme’s disease, Coxsackie virus, Babesia, Herpes virus 6, Anaplasma, Bartonella, Ehrlichia, Chlamydia and Mycoplasma. It can be a real toxic soup. If tests are positive, you know the infection is causing issues. If negative, they may still be there causing issues, you just can’t find them on testing. All different types of bugs are usually involved like bacteria such as strep, but also viruses, fungus, mycoplasma, etc.
I have seen some doctors use broad spectrum antibiotics, antifungals, and antivirals, and use them over and over to kill these infections. These infections that cause the immune system to attack the brain. In a perfect world, you would rather avoid these medicines if possible. Antibiotics kill good bacteria in our gut as they are trying to kill the bad bacteria and mycoplasma in the brain. Mycoplasma is notoriously stubborn and very hard to completely clear even with months and months of antibiotics.
Antivirals also have side effects. Antifungals can be toxic to some people’s livers. Not too often, but enough that the liver needs to be monitored closely when on these meds for more than a few weeks.
Better options ideally are antimicrobials that will kill any bug no matter what kind it is, and no matter where it is trying to hide. These tend to be able to be used as long as needed without significant side effect potential. Basically use them until all the PANDAS symptoms are gone. Stop the antimicrobial and if the PANDAS symptoms stay gone, the infections are gone as well. If the symptoms start to return, then hop right back on the antimicrobial agent. The symptoms that are trying to return usually go away within a few days if restarted quickly. Use for two more months and try to come off of it again. This can be repeated as often as necessary until PANDAS stays gone.
As we have spoken of other times already, chronic infections are big drivers of autoimmune disease, not just PANDAS. When a person comes down with the infection mononucleosis, commonly called “mono”, their chances are doubled for getting the autoimmune disease multiple sclerosis sometime in their life. This is another autoimmune disease that attacks the brain. The acute Epstein Barr Virus infection that causes the mono goes away, but the bug is still hanging out, trying to cause an autoimmune disease later in life.
Get strep infection in your throat as a kid, if not identified and treated, in Africa you might end up with the autoimmune disease Rheumatic Heart Disease and die. In the US, because the acute infection is treated, we don’t get Rheumatic Heart Disease. But, some children go on to develop PANDAS because the strep bacteria just keeps on trying to create an autoimmune disease that attacks the brain on top of the acute illness.
But tests are available to see what is going on and then this information can be used to treat and try to clear the PANDAS and much, if not all, of the terrible dysfunction and heartbreak that goes with it.