Sun sensitivity

[Gingergrrl]

@Gingergrrl, have you had your genetics tested? My vit. D problem has a lot to do with my VDR gene.

Sorry for my slow response and in 23andMe testing my VDR gene (SNP?) was bad so I know it relates in my case. If I do not supplement with high levels of Vit D, my numbers get so low you cannot measure them, like "4" or "8" etc. My latest test was around 60 with the supplementation which my Endo said was very good for me.

I have no idea about the calcium channel autoantibodies and sun sensitivity.

No worries and they may not relate at all. More likely my sun issues are related to my MCAS.

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.

Am trying to mention them b/c I believe they are critical in my own case and may be to others as well. It's a panel called "PAVAL" done by Mayo Clinic which is how I learned I have the antibody. A doctor sent the blood to Mayo and you do not actually have to go there in person. I was re-tested at Quest in a panel that was very vague and useless IMO vs. the Mayo Panel which is outstanding and very clear in their report. I still tested positive for the same antibodies on the Quest panel but it blended different tests together and the numbers were harder to interpret. I would do the Mayo Panel if you were going to go to the trouble of testing.

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.

I have Hashimoto's (since 2013) and my Endo had tested my parathyroid numbers several times along with the other things you mentioned and everything normal except the Vit D (and of course the two hashi's antibodies.) Actually he found a few other abnormalities but they did not relate to PTH.

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.

No worries and hopefully my explanation above made sense. It's a paraneoplastic panel but my antibody correlates with two illnesses (small cell lung cancer and LEMS) which have both been ruled out for me at this time. So we know it is causing other chaos to my system which is why I will be starting IVIG as soon as my insurance approves it.

 

[Hope78]

@Gingergrrrl: oh, that's interesting! May I ask if you were just tested postive for these kind of antibodies or if you have elevated antibodies? I asked because I got tested some years ago for different kind of antibodies to rule out autoimmune illness. Antobodies were "not detectable", except anto acetylcholine antobodies and anti calcium channel antibodies. But: they were within the reference range. So does just having this kind of antibodies mean something as other antibodies were just zero, not detectable? Or do lots of people have these kind of antibodies within the normal reference range? I suffer from crippling thigh weakness and pain, sometimes barely able to walk.

I am also intolerant to sun, but not the light per se but the heat that comes with the sun. The hotter, the worse get my symptoms. I also don't tolerate sauna or sitting in front of the chimney in winter. So I guess I may have some other kind of problem that's not ultraviolet light related.

 

[Paralee]

@Gingergrrl and @Hope78....may I ask how you found doctors that actually do these more diverse/intricate tests? I've never heard of these. All I seem to get is a cbc and a cmp (?). They don't go looking for anything unless I ask and sometimes I get them. But they're common ones, like iron or thyroid or simple ones. It sounds like you have found doctors that can actually diagnose? If you can do it in a subtle way (not trying to put anyone on the spot), how did you find them? Thanks.

 

[Hope78]

@Paralee: this medical examination was a few years ago when I did not suffer from CFS or any related condition. I just had myofascial pain and the doc referred me to a muscle specialist who ran these special tests. It was a centre at the university, so they were able to ran these special and very expensive tests without kílling their budget. But nothing was found in my case (except some small numbers of antibodies which were too low to diagnose any disease), so I was sent home with the usual psycho-diagnosis.
I have another doc who is very familiar with cfs and all kind of diseases but the patient has to pay for the test, they are not covered my the normal health insurance and very expensive!

 

[Paralee]

Thank you. I wonder if TMG is included in myofascial pain. I was run through the mill with that and my dentist finally took over and corrected my bite.
@Gingergrrl thanks for the info, I don't know if I know enough to do that, but I sure could use a muscle specialist. I didn't know they existed. Good luck with your IVIG.
@Hope78, you gave me some ideas, thank you....yes, the psyche chache is a favorite, I know.

 

[Hope78]

What exactly do you mean about TMG and myofascial pain? Just asking because a few days ago I started with small doses. On the package they warn about headaches and muscle pain.

 

[Paralee]

@Hope78, I'm so sorry! I typed TMG instead of TMJ.

 

[Hope78]

 

[Gingergrrl]

@Paralee I don't know if anything I said made sense b/c was doing so poorly the last few days but the neuromuscular specialist is a neurologist who has further specialized in neuromuscular diseases like myesthenia gravis, LEMS, ALS, etc.

They can do EMG's and muscle testing and can definitely order autoantibody tests although I believe a regular Neuro can order them too which is what happened to me (but that doctor is not someone that I see ongoing). But the test results were useful for my new Neuro who I finally found and she is great after two horrible neuros but that is a different story. Hope this clarifies it better.

 

[Paralee]

@Gingergrrl , thanks for that info. I didn't know what to call them, I guess...but the internet has saved my life more than once, and that would have been my next step.

 

[OkRadLakPok]

So close, yet so far off for all those years.

That probably about sums it up for so many of us!!! Sooo soooo close!! Yet, so far away.......

 

[Sherpa]

My sun sensitivity seems to have improved after increasing my NAD+ levels with Niagen (2 caps on awakening, 2 caps at 2pm). I was very gradually able to expose my skin to more sun.. starting with 3 minutes per day, and increasing by 1 minute per week. I don't seem to be crashing in the sun quite as easily now as long as I am somewhat careful with limiting exposure, and I have LOTS more energy to do activities with!

 

[Paralee]

@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.

@Strawberry , calcitriol is a good vit. D to take (may take a prescription) because it's so much more absorbant for people having a hard time building it up.

You may want to take some vit. A if you need it, also, I have a variant that keeps the beta carotene from converting into vitamin A. Not a vitamin to just go crazy with though, or at least not without testing. Something else to think about, I'm just chock full of good news. I may have already mentioned some of this so sorry if I repeat.

You can go to parathyroid dot com if you want to learn about it. It's a great website by one of the world's best parathyroid surgeon. He and (one of) his staff (can't remember how to spell colleage) did my surgery. Sorry, can't help but brag about them, but it is a great way to learn everything you wanted to know ...... and maybe a whole lot more.

 

[L'engle]

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.

I don't know if you are still interested in this issue but I am having this type of problem. Sunlight, vitamin d supplements and foods with vitamin d all give symptoms that I think are to do with calcium and magnesium. I had the parathyroid blood test and it was normal. I get sick feeling that only gets better with the right amount of magnesium. I can't sleep if I have too much magnesium though so I am missing a lot of sleep due to the imbalance if I don't get enough to be effective or have too much. And it changes. Every, single day.

 

[L'engle]

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.

How did you supplement to fix this? Thanks.

 

[Billt]

My son has a different type of sun reaction. Can only be in the sun for a minute or 2. His skin is super sensitive.
and gets like a bad sun burn if he is out in the sun for more than a few minutes. Even sun through a window will do this. His whole body seems hyper-sensitive.

 

[L'engle]

@Billt I have this red reaction as well, and even through windows. My face is red and itchy all summer unless I stay in dark rooms throughout the day.

 

[Billt]

@Billt I have this red reaction as well, and even through windows. My face is red and itchy all summer unless I stay in dark rooms throughout the day.

L'engle. do you also get flush feeling ? My son get"s very hot internally, from just small about of sunlight or heat. he doesn't regulate temp well at all

 

[L'engle]

I don't really flush but I do get ill from hot temperatures. I don't do well with hot or cold. That sounds very tough for your son, especially hard for a child to have such restrictions and discomfort.

 

[Gingergrrl]

@L'engle It is always interesting to me to re-read stuff that I wrote 3-4 years ago when older threads like this one get revived. I don't think @Paralee posts on PR any more but am tagging her again for you just in case.

In 2016, I had a horrible allergic reaction to the sun when I was attempting to lay in the sun near a pool. I was wearing sweats and a t-shirt (so most of my skin was not even exposed) and was using a wheelchair at the time but wanted to watch my niece swim in the pool and my step-daughter & I were going to sun bathe. Well in less than 5 min I started to feel very over-heated and then noticed that there was a red, splotchy rash all over my legs (underneath my clothing)!

So I had to go back to my apt to recover and took photos of the rash (which probably took a good 30 min to really fade). My doctor felt it was an allergic reaction to the sun and I have never attempted to sun bathe again. Now that my dad just had major surgery for melanoma, it is probably not wise for me to attempt this any way (and I do not do well with heat in general b/c of POTS and much prefer the cold).

But I am curious what would happen if I ever were to attempt to lay out by a pool or at the beach? I have not tried it yet (and in my mind it is still in the category of things that I cannot do) but maybe some day I will try it? My temperature regulation still feels a bit off to me and it runs very low on a thermometer (96 or at most 97) and I feel very uncomfortable in the heat.