posted
So.. dx with lyme in 2003 lived on this board as smiles. The team rock with all sorts of answers. Still have flares (although and ID doc during my third episode of lyme said it's fibro)...
Latest inquiry. I'm now a distance runner (thankfully) but over the past 1.5 years I've really become bothered with sun sickness while running. It might be 80 degrees and as long as I'm in the shade I feel ok... but the minute I'm in the sun for any period of time - BAM - feeling crummy.
Has anyone found any correlation suggesting heat sickness (mostly related to the sun) and lyme?
Thanks.
Posts: 2 | From Easton, MD | Registered: May 2015
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posted
Sorry to hear! I hope you can figure it out.
I'm very glad to hear that you are feeling well enough to be out running!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does your skin get into the act, too? If so there is a particular kind of porphyria that should be considered, a VERY particular kind.
But if your skin is not at all affected, sounds like some kind of autonomic nervous system / brain "temperature" control / or adrenal issue - perhaps.
Could be damage from lyme to such systems.
Is this only when the sun is out and it's warmer?
Can you run in the winter sun?
Is there a particular outdoor temperature that is the trigger?
Do clothes matter? Such as being in all cotton, zero synthetic material? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- you say: "Still have flares (although and ID doc during my third episode of lyme said it's fibro)..." (end quote)
Assuming here, too, that you KNOW he / she is wrong about that.
Were you treated by an ILADS educated LLMD for long enough with the full range of treatment? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
JKR, I am also bothered by the sun while running or even just being outdoors in the summer sun for more than a few minutes. It was one of my first symptoms and though I've resolved many, I haven't had any success with this. My skin gets patchy goosebumps, mostly on my legs. Winter weather is better for me to run in. Sorry I don't have any advice. Just know you're not the only one.
Keebler, what kind of porphyria are your referring to?
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Porphyria cutanea tarda (PCT) is the most common subtype of porphyria.[1]
The disease is named because it is a porphyria that often presents with skin manifestations later in life. The disorder results from low levels of the enzyme responsible for the fifth step in heme production.
Heme is a vital molecule for all of the body's organs.
It is a component of hemoglobin, the molecule that carries oxygen in the blood.
Hepatoerythropoietic porphyria
has been described as a homozygous form of porphyria cutanea tarda,[2] although it can also be caused if two different mutations occur at the same locus. . . .
. . . [section] Signs & Symptoms
Porphyria cutanea tarda (commonly referred to as PCT) is recognized as the most prevalent subtype of porphyritic diseases.[3]
The disease is characterized by onycholysis and blistering of the skin in areas that receive higher levels of exposure to sunlight.
The primary cause of this disorder is a deficiency of uroporphyrinogen decarboxylase (UROD), a cytosolic enzyme that is a step in the enzymatic pathway that leads to the synthesis of heme.
While a deficiency in this enzyme is the direct cause leading to this disorder, there are a number of both genetic and environmental risk factors that are associated with PCT.[4] . . .
full article at link above, with sources listed at bottom of page.]
Also search the American Porphyria Foundation, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Exposure to sun, with resulting exhaustion can be a sign of adrenal insufficiency. If your eyes are sensitive to the sun, this might be a clue. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
do you feel this way from other heat sources? - like in a heated room? sauna?
I get like this too. but all heat bothers me, and when in the sun I feel like I am being baked in an oven like a cookie.
I know it is some tick disease thing, but I forget where or what I read exactly about it a while back.
so nice you can run!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife will often become symptomatic from lots of sun. I don't have an explanation for it but the sun seems to either kill some Lyme or make it active. My best guess.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I got that during lyme, when lyme was active. I am sure that babesiosis caused me that.
But possibly other infections cause that. I know that many times when my lyme activates (or I get bitten again), I get problems with the sun (nausea, bad feeling, my eyes don't like sun, stuff like that).
it happens pretty many times. When infections are killed, my sun sensitivity disappeared for good.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thanks all. I know I am very blessed to be running. Hoping that this gives some hope that even with this darn disease you can go after these goals.
Good information, and thoughts. The only other contributing factor could be that I'm 41, and ladies, as you know that can be the start of premenapause symptoms.
The sun starts bothering me in temps of 60s and above. It can be hotter out, but if I'm in the shade I feel okay.
gotta love life.
Blessings and continued healing to all!
Posts: 2 | From Easton, MD | Registered: May 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
i'm almost 50, really in pre menopause now, but still, I love the sunlight, and the sun. Until a bad infection comes to bother me.
I sometimes know I have an active infection DUE to sun sensitivity!! I keep looking, until I find where the infection is, treat it, and like day and night (literally!!!), my sun sensitivity goes away.
I guess in your case, it is more the temperature that bothers, not the sunlight? For me, it was the sunlight itself.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thank you for the info, Keebler. I've had my adrenals tested a few times and everything's pretty normal. The symptoms activated by sun and heat also occur if I'm running indoors on a treadmill, although not quite as quickly. I can usually run for about 15 minutes before the patchy dysthesias kick in and I start to feel sick. I can't do saunas, but a hot shower doesn't bother me. Also, if I'm in water, like a lake or ocean, I'm okay if the sun is out. It's as though my body doesn't know how to cool itself, but outside sources like cool water or a breeze work to keep me cool. I'm thinking of purchasing a cooling vest as it's going to be a long summer!
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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