I have Lyme. I’d like to not have it anymore. I also just want cake.
You ever have one of those experiences where some sort of unanswerable question bored deep into your mind and refused to come out, meanwhile various opinions were given to you but none fully satisfied this little brat of a gnawing question, until one day you happened upon something and it was like the heavens opened and light descended and you had the biggest “AH HAH!” moment ever and all was right in the world again?
Well I just had one of those.
So naturally, I’m all like “WHERE IS MY SOAPBOX, I MUST WRITE”. But really, if my discovery can help even one of you, then I write. And I wouldn’t even call it a discovery, because honestly I could have googled this for more than a minute and made a few tweaks to my search words and found it easily a year ago. But alas, I’m human and get bored and then I can’t be bothered to spend more than 5 minutes on google before I walk away.
In past posts I’ve been a vocal advocate of sun exposure. I won’t link them here, because I just feel silly now that I am going to take somewhat of an opposing position *sheepish laugh*. I do still believe that natural vitamin D synthesis is best when tolerated and that the sun can help detox cells by warming the body and stimulating clearance of said toxins. It’s kind of like a little workout for your immune system. That being said, can we talk about how I willy nilly just promoted something that could actually make you more sick? Like the responsible little writer I am? In my defense, I plead prior ignorance. And here I am eating my crow so let’s call it even. So is the sun good for you?
Yes and no. I should probably explain myself. So the sun… two summers in a row now it’s made me sick. This current summer doing so much more subtly so. In fact I wasn’t even connecting it, probably because I was growing borderline addicted to my 15 minutes of sun every other day and enjoying my brownness I was developing. White girls and their tans, amirite? Also, sunning is medically proven to be a feel-good activity. UV exposure produces something called beta-endorphins in the skin.
Beta-endorphins literally bind to opioid receptors in the peripheral nervous system and reduce pain. From there they can make their way to the bloodstream straight to our brains where it binds to other receptors producing a GABA-like effect.
Sun is like nature’s little Xanax. Let’s just say laying out in the sun for a little bit each day deeply pleased the Tara. A lot of people with chronic illnesses report feeling so much better during vacations to places sunny and warm… well, it’s not all in their heads. Except it is. In the form of all natural opioid and benzodiazepine blisses. Plus it’s not like it’s torture to go to the ocean. Unless you are weird in which case I would never vacation with you and we probably wouldn’t be friends. So.
So I went over in my last post about healing looking ugly at times, and this does not detract from that truth in any way. I feel I’ve found just a piece of my symptom return puzzle. But it’s a big piece. So over the last month I’ve had some symptoms returning as I mentioned in that post. Doc told me to quit overdoing it. That satisfied my inquiring and worrying mind like 95%. So my stubborn remaining 5% googled some things and stumbled upon an article in TheScientist about UV radiation and autoimmune disease. Que Ah HAH moment. Then I began attacking my keyboard with new search terms in light of that revelation and have now had to rethink everything I thought about the sun before. I am working through coming to terms with my breakup from that glorious celestial sphere.
For decades now the sun has been a known antagonist in various autoimmune disorders, specifically Lupus, dermatomyositis (a skin/connective tissue autoimmune disease), and polymyositis (muscle/connective tissue autoimmune disease). And this is not just making them worse, but actually triggering their onset in genetically pre-disposed individuals. Other auto-immune diseases like MS and type 1 diabetes can be exacerbated by the sun post diagnosis in certain individuals, but the sun seems to have a protective effect from these illnesses in other healthy individuals. So what’s going on? Well we don’t entirely know, but we’ve figured some things out.
So everyone exposed to sunlight, depending on degree of exposure, can develop something called erythema (temporary, patchy reddening of the skin from damage or irritation to capillaries), DNA damage, and photoimmunosupression. That’s right, the sun suppresses multiple aspects of our immune system. This is often why some people feel better in the sun. Along with those “feelin’ good” vibes we get from the sun described earlier, the sun also down-regulates immune activity… nature’s little corticosteroid. In people with over-active immune systems this can brings relief and can be a positive thing, in people with current infections this can be a bad thing. Either way, it’s a temporary effect and dissipates quickly, especially in short exposure times, for most people with here and there sun exposure.
To get deeper under the surface explain why some people are made more sick from sun exposure, we need to know what sun exposure even does. SO, whether you get a sunburn from sun exposure or not, your skin will generate reactive oxygen species ( fancy name for free radicals) from the UV radiation which do some damage and cause “sunburn cells“. These sunburn cells are basically outer surface skin cells that were damaged enough to be sentenced to death before they become cancerous (apoptosis). In normal people, the immune system clears these specific damaged and dead cells within 48 hours or so by recruiting the immune system to a) clear the cells, and b) clear the free radicals through the body’s production of glutathione.
Those with mutations at one or more of the genes that code for glutathione production can slow this process even more, which increases your risk for problems with sun exposure.
Normally dead cell clearances elsewhere in the body happen MUCH faster than 48 hours because the majority of the body is rich in macrophage cells which are like the body’s little street sweepers. Your skin doesn’t have them though, they have things called Langerhans cells to clean things up and help fight infections. BUT, this is the but… UV radiation exposure causes Langerhans cells to retreat from the skin, quite honestly, like little wusses. So the end results of this is your damaged and dead UV radiated cells and DNA are just laying around like some sort of post-war field scene. Any time dead cells are left to just hang around in the body, the body is going to get irritated by them and begin recruiting other cells to do the job Langherhans fled from. These cells arrive at the epidermis, see the dead cells as well as the damaged DNA strands, and because these pathways of repair become complex in the absence of Langerhans and TGF-beta reduction (TGF-what? I’ll explain later), abnormalities in immune response are triggered not just at the skin sites of sun exposure, but systemically. So this means your response can manifest as bizarre reactions near the skin and/or spill over into the rest of your body and stimulate symptoms body-wide. Not only that, but if the free radicals take too long to clear (because your glutathione levels are low), healthy cells and DNA will continue to be damaged long after you had the sun exposure making your immune system cells feel like they are trying to stop a perpetual waterfall. This would aggravate even the simplest of life form.
Fun fact: part of the mechanisms for why skin cancer happens in response to chronic sun exposure is this fleeing of langerhans… langerhans help fight mutated skin cells before things get out of hand and sun exposure reduces your langerhans cells.
Sidenote, I keep picturing Langerhans in lederhosen.
While all of this is going on, sun exposure simultaneously down-regulates TGF-beta, which is a specific cytokine that influences the growth and proliferation of many cell types as well as has both pro- and anti-inflammatory effects. When TGF-beta is decreased (say from like, I don’t know, UV radiation exposure), T cells will die (a big player in the immune system), food/supplement/medication intolerances may increase, serotonin uptake may reduce, protection from collateral damage while fighting infections is reduced, systemic inflammation activity is increased, mast cell activity increases, inhibition of acetylcholine formation happens (neurotransmitter that helps your nerves send signals to each other and is often very low in people with CIRS or chronic inflammatory response syndrome to begin with), slow-wave sleep is reduced (the deep sleep stages), muscle atrophy risk goes up, and the vitamin D receptor experiences a reduction in action. This is a huge list of potential consequences to chronically low TGF-beta. *Note, TGF-beta can also have very positive effects, see end of article for a link to everything you ever wanted to know about TGF-beta. The point is, when our TGF-beta levels are irregular to begin with (which if you are chronically ill, they are), the effects are far more pronounced than in the general population.
So, the short version, in summary: Sun exposure = increased free-radical production + cell death + DNA damage + slow dead cell clearance + TGF-beta reduction = mayhem, in some. It can really stir the pot for vulnerable individuals in awful ways. But, so you may be thinking, if sun exposure reduces the effectiveness of the immune system, why is the immune system also triggered by all of this and being crazy? The sun reduces adaptive immune system functioning (essentially your antibody makers and pathogen killers), but can rev up your innate immune system functioning (your inflammation makers, initial responders, garbage cleaners, etc). The damage from sun exposure, in vulnerable individuals, can frenzy up your inflammation even more when us chronic-illness-havers already deal with an over-active innate immune system. This is a known response, acknowledged even by the big heads over at Harvard and such. While I haven’t found studies linking Lyme to sun-induced symptom flares (I think it repulses the scientific world to study Lyme honestly), I did find lots of anecdotal evidence, which let’s face it, is our only bible in this chronic Lyme insanity.
As another interesting little factoid, the World Health Organization has found a link between sun exposure and recurrent cold sore incidences (herpes simplex) flourishing from the associated immuno-suppression. They go as far as saying they’ve found sun exposure to reduce immune activity so much it can render vaccines unsuccessful and increase an individual’s risk for various infections.
Color me impressed. And disturbed. And betrayed. And… bummed.
In addition to the negative effects of UV rays on those susceptible to immune craziness, sensitivity to the light in general can bring on a slew of neurological symptoms. Many of you may have heard of the adrenal fatigue test using a flashlight to test how long your pupils can stay constricted (quick google will give you instructions). I haven’t looked up research to prove the connection between tired pupils that don’t like to stay constricted and adrenal fatigue, but there does seem to be an obvious link between light sensitivity and chronic illness, of which adrenal fatigue always seems to go hand in hand with. Anyways that’s not the point, the point is that for most of us sickies, our pupils can’t constrict and hold, and so unless we wear welding helmets everywhere, bright outdoor light assaults our optic nerves. The optic nerves transmit the light directly to sensitive areas of our brain including our amygdala (emotion center). You may experience symptoms immediately (like I do with bright flashing lights heaven help me those bring me to my knees), or you may experience more chronic irritation of the brain and nervous system. This can be happening even if you don’t feel bothered by light. It’s sneaky. Light has a profound effect on sensitive brains and nervous systems. It’s fascinating to me. But I’m a bit of a nerd.
So let me break it down to you as far as my personal experience.
Ok but like about the sun. Last summer I attempted this and would notice fairly immediate symptom flares within hours – fatigue and tiredness, aka I needed a mega nap, my heart symptoms would flare up a bit, face would flush and feel hot and get red, I felt weird sensations in my head, brain fog ramped up noticeably, little upset in the stomach, and just generally felt unwell. Sometimes a low-grade fever would accompany this. Sometimes I would get hives or sun rashes. The longer I continued to lay out in the sun the more these symptoms would build. I thought I was doing something good for myself, maybe the extra Vitamin D was strengthening my immune system and I was fighting infections on my own, maybe I was detoxing. Whatever it was, I scoffed at the idea it was a bad thing when a PA at the clinic I go to told me to stop going out in the sun. I then relapsed with Babesia and became too sick to lay out anyways so the issue became moot.
This year, my anticipation to sun worship was at an all time high. I experienced no definable flares after each short exposure like I did last year. I just felt happy about it.
However, as my last post described, I started to experience a gradual return (as opposed to flare patterns) of some symptoms over the course of 5-6 weeks – neurologically and from systemic general inflammation. Again I was told to get out of the sun and rest. Apparently I’m one of those stubborn people that needs to be told things twice. Before I gave up my precious natural Xanax, I turned to the ultimate source of truth and light, the internet, and found this information.
At first, I freaked out thinking this meant I had Lupus, like maybe my Lyme had triggered Lupus. I do have a family history of autoimmune disease and have taken the ancestory DNA test and had many markers for autoimmune diseases like Lupus. But after a while, I thought how much all of this made sense. (by the way, I’ve had several negative ANA tests, but just to be sure I’m asking for another one from my neurologist soon). My immune system is still touchy and lots of harmless things set it off that I wasn’t sensitive to before. Being that sun exposure is moderately harmful and does damage cells, rationally this could qualify as a trigger. After reading up on the actual mechanisms of what sun exposure does to the body, I’m even more convinced the sun is just not something I’m ready for right now. Stupid langerhans. SO, I stopped my sunbathing. One week later, today, every symptom I was complaining about returning over the last few weeks has disappeared. Literally gone. Dissipated. Which, I mean, I’m happy about, cuz I feel much better. But galldang, this little moth is once again being brutally kept from her sunny flame.
Once again my silly notions of what I thought was best for myself was smacked with some truth by my doctors, and they were right. Now not everyone is going to have these same sensitivities to the sun. Not every individual with Lupus even is triggered by the sun despite it being a known antagonist. So how can you tell if the sun is your friend?
Ponder these questions:
Any one of these could signal a potential inappropriate immune response to UV radiation and/or a light sensitivity problem that is irritating your CNS without your knowledge of it. In the case of the former, get out of the sun. Obviously, as we all know, figuring out what is causing what symptoms when you are so sick is very hard, and heat alone is known to trigger a lot of us. So as always, experiment on yourself (like testing cooler morning sun versus hotter later day sun, etc). Either way, be cautious. You do not want to encourage any form of autoimmune behaviors if your body goes a little ham with trying to clear it’s own dead tissues. If you already have or have had autoimmune activity, I’d talk to your doctor before starting any kind of regular sun exposure routine. It’s not a far leap from damaged cell to healthy cell when your dysfunctional immune system is already revved up and irritated from underlying disorders, predispositions, or Lyme and Co. We see these two diseases (Lyme and autoimmune) in tandem so much as it is, take care of yourselves guys! Use lots of sunscreen, don’t assume because you are darker skinned that you are immune from these problems and avoid mid-day activities outside when possible. Besides, you can look very Audrey Hepburn in over-sized hats and sunnies. Something I’m telling myself right now to pacify my disappointment.
If you have absolutely no problem with the sun, enjoy! In careful moderation it IS good for you when your body knows what it’s doing. And the positive benefits of UVA radiation is proven by science, so enjoy those too! I’m heckin jealous of you. Want to be you. Envision myself in your body and not mine…
Ok annnnd we’re done here.
TGF-Beta Info click here.
UV Radiation and Lupus click here
UVB vs UVA Radiation and Autoimmune Responses click here
The WHO, cold sores, and UV-mediated immune problems click here