Navigating chronic illness can be extremely frustrating, time-consuming, and generally a big PIA.
Finding a doctor that is a good fit, waiting for the appointment, the previsit anxiety. Afterward, fighting with insurance and the pharmacy over medication coverage, and then playing go-between trying to get the prior authorizations approved. Paying for ALL of the copays after you hit your high deductible and then adding in all the other out-of-pocket costs.
The list is endless and a huge headache.
Getting care when you are suffering should be easy. It should be empathetic or at a minimum respectful. It should be a healing experience.
One of my missions in life is to help you better communicate with your healthcare team.
Let's dive into Part 4 the 5 secrets that your immunologist may not quite have the time to talk to you about during your office visit.
Click here to read Part 1, Part 2, and Part 3 if you missed them.
4. Inflammation is like a fire.
Fires can be initiated by a match or lightning strike - each starts as a spark. Part of how big a fire grows is determined by the environmental conditions: is there dry kindling? Did it rain recently? Is the fire department nearby? Has there been a water shortage for years?
The sparks: This might be a viral infection, physical or emotional stress or trauma, or allergy season. And frankly, it might be bad luck. There are certain aspects that play into the development and the progression of autoimmune conditions and allergies that we don't have fully explained quite yet.
The Suppression System: I think about prevention and slowing the progression of inflammation with lifestyle medicine. If you want to try to prevent the grass from drying out and the kindling from building up we can provide our bodies extra resilency by living an anti-inflammatory lifestyle. This can help the spark from igniting further or even taking hold. In some cases, it's like a flame retardant.
One way we can do this, when we think about protecting ourselves against different infections or vaccines. I know that sometimes people are concerned that they might be at greater risk of for adverse reactions from vaccines. But so far, when we look at the data, and we look at all comers, including those with autoimmune conditions, vaccines are going to put you at a much lower risk of an adverse reaction than the natural disease. And this has been especially true with COVID.
Another example is the human papilloma virus, or HPV, which is a virus that is associated not only with cervical cancer, but also head and neck cancers like throat, tongue and mouth cancer. The vaccine has been found to prevent and in some cases used in treatment of these cancers.
How can we lower our risk with nutrition? The best way is by eating lots of different plants. Different types of fiber from fruits, vegetables, nuts, beans, seeds, spices, and herbs are going to provide our good gut bugs with the fuel they need to promote the production of anti-inflammatory substances called short-chain fatty acids. Not only will you have softer more frequent bowel movements, but you will have more resilient gut health and have less room to fill up on many of the ultra processed pro-inflammatory type foods we are surrounded by in modern life.
Sleep is also super critical in immune system health, helping you fight off infections helping keep the immune system in balance.
Chronic stress impacts the immune system. Many of the initial studies on the role of stress on immune system health were actually performed where I see patients at Ohio State. What the husband and wife team, Drs. Glaser found was that medical students’ white blood cell counts changed over the course of the semester. Alright, so those are just a few of the ways we can think about preventing with anti inflammatory lifestyle. And the one other that I almost forgot to mention, which I think is so important.
Last but not least, building meaningful, deep connections with other humans is protective, and really instrumental in our healing, especially if we're dealing with any sort of trauma, either in our personal history or in the history of our ancestors- i.e. generational trauma.
The Smoke:
Alright, do you smell smoke? Or is the smoke alarm going off?
Your symptoms are the smoke. If you feel like something's not quite right, this may help point us in the direction of where that fire may be coming from. And so that takes us back to part 2- your history- the pattern, the type, the timing of your symptoms is really important to help us figure out where that fire may be coming from.
So in the case of Sjogren's, dry eye/dry mouth kind of points us in that direction. Suppose you are dealing with stiffness in your hands and feet, in particular joints in your hands and feet that might point towards rheumatoid arthritis. If you're dealing with low back stiffness or pain that might lend us towards ankylosing spondylitis.
All of these different symptoms really can help point towards a particular diagnosis and show us where that smoke may be coming from.
The Containment systems:
All right, now let's think about some of our fire containment systems, we may have a sprinkler system or a fire extinguisher that can help the fire when it's small and contained. So this is early treatment with medications or maybe supplements that may have mild anti-inflammatory effects such as tumeric. This may be a situation where using a little bit of an NSAID like ibuprofen or meloxicam might be helpful in getting some of that inflammation under control. Unfortunately, these are not likely to put out a seven-alarm fire.
As we think about that more significant fire, persistent inflammation may require us to call a fire truck to put out the inflammation, they're going to need to connect that hose to the fire hydrant, and they are really going to need to really extinguish it before it really is a catastrophe.
This may represent when someone needs a course of corticosteroids like prednisone or a Medrol dose pack to really turn off that inflammation to give a disease-modifying treatments hydroxychloroquine or Plaquenil, or in the case of rheumatoid arthritis, methotrexate or biologic medications a jump start
Now certainly, we don't want to have to turn to prednisone or corticosteroids all the time. These medications have significant potential for long-term side effects, but sometimes it's what's needed. And sometimes you need to put out the fire before things like an anti-inflammatory lifestyle and supplements are going to really provide a meaningful benefit for the long term.
The Wildfire:
What about those catastrophic situations, that multi alarm blaze, when all the fire departments are coming to assess the situation?
When I was in grade school, we had a hotel and resort just down the road called the Wagon Wheel. If you were from Northern Illinois or the Chicago area back in the 1950s and 60s, this was an incredible resort where people would come skiing. Scotty Hamilton did his ice skating training there before he became an Olympian. This place was really the only landmark in our town of 2500. It also was built from old railroad ties…
Sadly, around 1993 a series of huge fires took place. As a 9 year old, seeing the sky high flame, helicopters, and dozens of fire departments from all over the countryside left an impression (along with the terrible smell).
When the inflammation gets completely out of control, it is known as cytokine storm. This occurs, sometimes in severe life-threatening autoimmune conditions like macrophage activation syndrome or in severe infections like sepsis/septic shock.
Immune system chemicals called cytokines are released in huge amounts, it's causing the blood vessels to become very leaky, which in turn causes our blood volume to go down, your heart rate to go up, body temperature to rise (or drop), and decreases blood flow to kidneys, liver, lungs, and brain. People aren't thinking straight, they aren't making urine, and they need the ventilator to help them breathe.
This is a major issue that has occurred with COVID and can occur with other infections, bacterial and viral infections. Our own cells end up taking the hit as our body is doing everything to fight off the infection that triggered this robust response. This situation requires a whole lot of help by way of the intensive care unit.
There are multiple teams of doctors, nurses, therapists, countless medications that are used to help treat the infection to try to regulate, if possible, the inflammation. Given the complexity of the immune system, though, we've had some trouble figuring out the best ways to do that effectively. More often than not, we are acting to provide support to the body to help the body through this really scary life threatening situation and help the immune system regain balance on its own as the infection and inflammation resolves.
And this is why if you're on an immune-suppressing medication and you develop a fever or an infection, your rheumatologist or your, allergist-immunologist will instruct you to call them. You may require antibiotics or certain lab tests sooner than the average person to make sure you're okay.
If you are curious about what strategies we use in our family to live a more anti-inflammatory lifestyle, download my free Anti-inflammatory secrets!