Feel Worse After Being in Sunlight/Not Heat Related

I haven't experienced this directly, but I read Polly Murray's memoir ("The Widening Circle: A Lyme Disease Pioneer Tells Her Story") and remember her describing this kind of reaction to sunlight as a recurring issue she experienced over a period of many years.

Yeah it's an interesting read. In case you aren't already familiar, Polly Murray is often credited as the woman who helped "discover" Lyme disease. She lived in Lyme, CT and it sounds like she was repeatedly/chronically infected from about the mid-1960s to the mid-1970s before Lyme was "discovered." She talks extensively about her reactions to sunlight in the book and many doctors (at least those who took her complaints seriously) suspected lupus.

Could it have anything to do with Vit D?

What’s a lupus like reaction?

I just read the LadyofLyme blog. It jogged my memory. I recall times early in treatment when I was in a months long herx. I wanted to be outside in the sun and heat. I got sapped suddenly and felt like all the life had drained out of me.

I don’t recall having this in winter, so I can’t say for sure if it was the sun, the heat, or a combination.

I have the same issue with sun.
I was 3 hours under the sun 2 days ago. Hats on.

When when I came back home, I made sure I had no sun burn.. because I felt I had a lot... the feeling reminded me of getting a sunburn and being dehydrated.

But I was not sun burned.
I felt terrible the rest of the day.
Woke up in sweat during the night.

Slept in 10 hours..
The next day I was fresh and ok.


I seem to have developped a sun intolerence.
Thiught it might be due to years of ABX...

i have had exactly the same thing

even 20 mins in the sun causes severe fatigue, flue like feelings, just all the energy drained out of me.

haven't tried much this year - and i am overall better than i was so hopefully i will not experience it to the same degree

its not the heat directly - happens even when not very hot outside - and i can tolerate other forms of heat well enough.

but our bodies produce many signalling chemicals when we are in the sun - not only vitamin D.
there are lots of immune related compounds also.
so i would also think its an immune mediated effect - not necessarily via mast cells.

generally i believe most of these chemicals are good for us and being in the sunlight is a natural part of our original environment that we will be adapted to thrive in - and so is likely to be a pro-adaptive stimuli for most healthy people. but as we all already know many things that are good for people who's bodies are in a natural healthy state don't work so well for people with Lyme and the immune dysregulation that comes along with that.

it may well be that this sun exposure is actually a good thing - but much like many other therapies - many of us cannot take too much of them from the off.

for me hot baths have been like this too - initially they would wipe me out completely - but over time i have found i can tolerate them better - and the heat shock proteins are probably benefiting my overall health as well as the detox effects.

I love the sun but can no longer tolerate it. I just feel wiped out. After Lyme treatment in August 2019 we went on a beach holiday to a place I love. I felt so great the first day and even used the gym after not being inside a gym in years, then I took a long walk into town. Did all this early and with SPF and hat. By the next day I had fever, swollen lymph, and overall flu like symptoms. Almost flew home. Stayed in bed 80% of the remainder of the trip. So it does something. Last trip for Lyme treatment my son's doctor tested him and said he is allergic to being in the sun and that this happens to many LD people. I still love the sun and prefer outdoor walks but on hot days I go very early or late.

Lot of interesting angles posted. So there are more people with Lyme impacted by sun, not heat, than I thought and could find online. As for why? That seems to be a question that is hard to find an answer for. The vitamin D thought, immune response, herx - all possibilities.

Huddie's response of "I just feel wiped out" is a great way of putting it, at least with symptoms I get. From 2006-2011, I had lost a lot of Lyme symptoms and was working a lot. I DJ'd around Atlanta at all kind of events and had a side business painting, just to make extra money. Ended up pressure washing and painting a HUGE high school football stadium (cement bleachers, two giant sides) and paining a lot of that stadium in the summer. Got a bad sunburn, as in very bad, and I've always wondered if that is what set off major problems with Sweet's Syndrome less than a year later and a return of all Lyme symptoms.

The more I read about UV, the more I believe it has played a part in problems. My son and I just went and hit golf balls at a driving range under cover (first time in a year or more), and now I don't feel as good as before going. But, as mentioned by garzie, I think it is more of an immune response, rather than immune disease. But that is conjecture.

Now seeing a number of other people experiencing same reaction, my thoughts, once again, go back to Lyme and Bartonella.