Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Sun sensitivity

Discussion in 'Hypersensitivity and Intolerance' started by Paralee, Jun 25, 2016.

  1. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    First of all, let me just say I'm new and almost everything I read is out of my range.I'm trying to put some things together for myself.
    This is for the ones that aren't able to be out in the sun. Is it the summer sun? Or any sun? I lost many years with lack of diagnosis for hyperparathyroidism. Most dr's don't/can't diagnosis it, so I finally figured out mine and went on forums for it to learn more. Some members could not bear the sunlight and they said it had to do with the vit. D3. With hyperparathyroidism, vit. D plays a big factor. I don't know if it has anything to do with this post, but I thought I'd throw it out there, FWIW.
     
    xrayspex and L'engle like this.
  2. aaron_c

    aaron_c Senior Member

    Messages:
    634
    Likes:
    987
    What happens when you spend time in the sun?
     
  3. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    Some people with too much calcium and/or parathyroid hormone react badly with the sun. Some of them can't even stand sitting at a window with the sun shining in and have to move away. It made them feel pretty awful. I wasn't that bad with it, although sun was (and now still is) hard to take much of. We equated it with the vitamin D3 problems that go along with the hyperparathyroidism. I'm reading other threads here and now I'm wondering if it is two separate problems or two sides of the same coin. So many more possibilities than I had any idea of.
     
    L'engle likes this.
  4. aaron_c

    aaron_c Senior Member

    Messages:
    634
    Likes:
    987
    Can you say more? Pretty awful how?
     
    Paralee likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    I have sun sensitivity now too so will follow this thread and curious how it relates to calcium someone mentioned?

    I think for me it is related to my MCAS and it often gives me a red splotchy skin rash and my breathing becomes even worse and I feel extremely uncomfortable.
     
    L'engle likes this.
  6. ahmo

    ahmo Senior Member

    Messages:
    4,329
    Likes:
    6,508
    Northcoast NSW, Australia
    I had extreme sun sensitivity from the time I collapsed w/ ME until I began taking supplements for pyroluria. Within a day or 2 it disappeared, never to return. I now find sun bathing causes oxidation stress, but I no longer run away from any sun on my body. I used the questionnaire below to determine pyroluria, then the protocol in the 3rd link below.

    http://www.hputest.nl/evraag.htmpyroluria questionnaire

    Klinghardt: Autism, Lyme, Pyroluria vid

    Short Version (36pg) Pyroluria/Lyme protocol. From Powerpoint doc used during Klinghardt presentation: Lyme Induced Autism

    http://www.lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf
     
    xrayspex, Gondwanaland and L'engle like this.
  7. roller

    roller wiggle jiggle

    Messages:
    451
    Likes:
    214
    for me any light sensitivity is related to the eyes.
    wearing sunglasses and/or a hat helps.
    otherwise sun is much beneficial for health.
     
  8. Strawberry

    Strawberry Senior Member

    Messages:
    785
    Likes:
    1,475
    Seattle, WA USA
    @Gingergrrl I get rash and hives from sun exposure. I have a thread here http://forums.phoenixrising.me/index.php?threads/pmle-sun-allergy.34291/#post-705878 that talks about my experiences, a research paper, and treatments. I take beta carotene daily, and when I go in the sun I use Shirudo lotion. That lotion is my savior. Many more details are in that last post, and in the paper that is linked it mentions "calcitriol" https://www.drugs.com/cdi/calcitriol.html


    Whether or not it is the same calcium thing that @Paralee mentions, I have no idea. But I am very interested!

    Of course your breathing issues in the sunshine need to be first priority, but just thought that you and others could find some benefit from the rash info.
     
    SamanthaJ and Paralee like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    Thanks and for now I am just staying away from the sun as much as possible. We have another heatwave that is supposed to start very soon and I don't do well with hot weather let alone direct sun exposure. Am pretty sure it's MCAS related and don't understand the calcium part.
     
    Strawberry likes this.
  10. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    I'm sorry I don't remember just what they said it did symptom-wise. I wondered if since most of us were plagued with low vit. D3 that the body might be taking the vit. D3 from storage and throwing too much in the system since hyperparathyroidism puts too much calcium in the blood, a lot coming from taking it from the bones. But it could also be that the body shuts down the mechanism of vit. D3 absorbtion in the gut. I was very brain fogged those years and it took a long time to study enough to figure out what I had. Then I had to fight for a diagnosis. I think many of the people plagued with this problem is the fact that so many things will temporarily bring parathyroid numbers down (therefore bringing calcium back into the "normal" level). For instance nicotine, magnesium, alcohol, many medications and supplements. But that's just my theory. Vit. D3 will bring down PTH (parathyroid hormone) also, so although your calcium shows "normal", your PTH is still too high even though it's down some for a whileThey sometimes refer that to "normocalcemic" hyperparathyroidism.
    Some people with hypothyroidism (and possibly ones with low vit. D3 (?) ) tend to do a little worse after the out of control adenoma(s) is removed (by a specialist surgeon). Also, low vit. D3 for at least a few years is suspected of causing this.

    @Strawberry, I think you are referring to the real secondary hyperparathyroidism and I will definitely read your article. It stands now that surgery is the only way to cure hyperparaT, and some get complications after surgery. It would be so nice to be able to control it without surgery, but it tends to set off other (usually auto-immune) problems for some of us. Thank you all for your responses, I never figured this thread would get this attention.
     
  11. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    @Paralee I also cannot maintain Vit D levels without supplementing with fairly high dose Vit D. My serum calcium levels are normal and when my Endo tested my parathyroid, it was normal. However, I test positive for "N-type Calcium Channel Autoantibodies" also called "Voltage Gated Calcium Channel" (VGCC) Abs. Recently I have developed this allergic reaction or sensitivity to the sun as well.

    Am curious if you understand the connection between all of these things (if there is one?) - the low Vit D, the calcium antibodies, and the sun sensitivity? No worries at all if you do not know but you sounded really knowledgeable and thought you might have a theory!
     
  12. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    @Gingergrrl, there is a link I can direct you to, I will have to find out if that's allowed here. I will make a note (sorry, some brain fog still lingers) to get back to you and explain what I know and give you that link or list it here if it's ok. Right now Hubby wants us to watcha part of Game of Thrones. :) (It has a lot to do with the reverse levels of calcium and PTH.)
     
    Groggy Doggy and Gingergrrl like this.
  13. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    @Gingergrrl, have you had your genetics tested? My vit. D problem has a lot to do with my VDR gene. I have no idea about the calcium channel autoantibodies and sun sensitivity. My sun sensitivity is more heat related now, I think; maybe because of the VDR gene which can be supplemented and brought up in most cases.
    I want to thank you very much for bringing up mentioning the N-type Calcium Channel Autoantibodies, though. I need to explore the channels and get some more testing done. I've known about them but don't know how they work, etc. and I didn't know about those autoantibodies. I'm way behind everyone on here.

    A fairly "easy" way to suspect hyperparathyroidism is getting several tests several times. They should include serum calcium, parathyroid hormone (PTH), albumin and vit. D. Doctors seem to think without high calcium it is secondary calcium, but that's usually not the case. They also believe that your calcium will go up in a steady manner,, that's not the case. A parathyroid that has an adenoma (almost always benign) is out of control, so your calcium will usually be up, down, normal, etc.

    It's the fluctuation of calcium that shows a problem. Also the higher the calcium the lower the pth should be. In normocalcemic, PHPT (pHPT?) even though the calcium is in the 9's, your PTH will usually be too high, even though it shows in the normal range. Kind of like TSH and thyroid levels.

    Say one of my calcium levels was 9.9 (within levels of 8.8 and 10.4) and my PTH was 67 with levels of 15-76, that's a red flag. Several of these tests taken will almost always show calcium up and down and PTH different levels from middle to high. A lot of PTH is well over the limit. Some dr's believe as long as your PTH is normal range,also, that's ok because your ionized calcium is within levels. My ionized calcium levels were always normal but I had two parathyroid adenomas that had to come out. I read somewhere that hyperparathyroidism is like #3 on the endo list, but nobody seems to include it in their testing unless they are suspecting it to be a problem.

    Sorry, I'm getting long winded but it just happens to be one of the few things I know about. If you want to know more about it let me know and if you want to tell me where to find out about the calcium channel autoantibodies I would love to know about them.
    (I'm wondering if the extreme sunlight sensitivity and pHPT might be two different problem areas instead of automatically connected because some pHPT people do not have that problem.)
     
    Last edited by a moderator: Jun 28, 2016
    Gingergrrl likes this.
  14. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,510
    Likes:
    3,499
    I do too correlate anaphylaxis from sun exposure with vit B6 deficiency (with immediate relief upon suplemmentation). I am sure there is a proper biochemical explanation written in some book or study and when I find it I will post it here.

    B6 is synergystic with magnesium and its routes cross with vit D in insulin sensitivity and thyroid activation (both interdependent).

    The dance between calcium and magnesium is summarized here, with B6 as guest star. This site is a summary of the latest books on nutrition and metabolism (which in their turn cite peer reviewed scientific studies) + the clinical experience of the author.

    Supplementing high doses of B6 (30mg) in the past has only blocked its desired effects for me, while supplementing low doses (6mg) made me see heaven and then hell shortly after due to deficiency in other nutrients (mainly iodine).

    In terms of dosages the best approach so far I have found to supplement with b6 is this one.
     
    ahmo likes this.
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    Thanks for the additional info @Paralee and will read it later tonight and try to absorb it. I don't know anything about parathyroid issues (or science in general :D) but am curious if my new sun reaction is purely MCAS related or could relate to calcium and my antibody issue? I don't get anything like anaphylaxis from the sun vs. a blotchy skin rash and overall breathing/feeling worse. Will definitely respond to this later after I have read it closer. Thanks again and hope you enjoyed your TV show w/your husband since it was on this topic LOL ;).
     
  16. Paralee

    Paralee Senior Member

    Messages:
    513
    Likes:
    553
    USA
    @Gingergrrl, sorry it was so long, but I can't seem to condense as much as I used to.

    @Gondwanaland, thanks for that link. It has some info in it I need and explanations on why I can't seem to take much magnesium. I have bookmarked it for reading really soon (probably several times).
     
  17. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,510
    Likes:
    3,499
    That is the definition of anaphylaxis: hives + swelling of pharynx/oral mucosa. It can bw more or less severe depending on the amount of exposure to the allergen.

    Interestingly
    I suppose vit D and vit B6 are interdependent.
    I have greatly benefitted from magnesium in the past but right now I get symptoms that are only relived by iron supplementation.
     
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    I do not get hives from sun and the rash is completely flat. My breathing is bad 24/7 and sun just makes it more uncomfortable but not similar at all (for me) to when I've gotten anaphylaxis from food (with throat itchy and narrowing/closing, thick phlegm, lungs tightening, tachycardia and BP drop, diarrhea, shaking and confusion etc.)

    Sun reaction is more of an annoyance but has not felt dangerous to me like food reactions. But am avoiding the sun as much as possible right now to be safe!
     
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,144
    Likes:
    23,371
    USA
    Also @Paralee it was not too long at all what you wrote, am just about to leave for an appt and want to read it later when I have more time. I appreciate both of your responses.
     
  20. ahmo

    ahmo Senior Member

    Messages:
    4,329
    Likes:
    6,508
    Northcoast NSW, Australia
    I'd taken high doses of B6 for many years. The difference here was using P5P. As I said, the change was almost immediate. So close, yet so far off for all those years.
     
    Paralee and Gondwanaland like this.

See more popular forum discussions.

Share This Page