I just can't muddle through all the posts on this topic gone rabid and all the naysayers posts... to find out if I can get in the sun today.

I have my wedding coming up in 6 weeks and since I am being married and honeymooning in the USVI, I really need to be getting a tan before I go and need to be outside as I am typing this.

Today is my third day on Benicar and last night was my second night on it and the best sleep I've had in years.

http://sarcinfo.com/phorum/read.php?f=1&i=213&t=213

If you have any other special questions about aspects of this therapy protocol, then here is the link to the webpage with their list of topic discussions:

http://sarcinfo.com/phorum/list.php?f=1

1. Restrict dietary intake of Vitamin D by eliminating all Vitamin D supplements and foods high in Vitamin D. Avoid sunlight and bright lights by staying indoors as much as possible and covering up well when venturing outside.

Protect your eyes from sunlight and bright lights by wearing dark NoIR 907 sunglasses outside and lighter NoIR 901 sunglasses inside.

This alone may make you feel a little bit better while you are waiting to see your doctor. Continue these measures throughout treatment.

From Sarcinfo FAQ:

I live in [Alaska][Antartica][Greenland] where there is very little sunshine. Do I have to stay indoors too?

Sarc patients' skin may generate 20 times the amount of D metabolites as healthy folks, since the bacteria live in the keratinocytes (cells of the skin) and make them hyper-active.

Too much Vit D can even be manufactured in twilight or at extreme latitudes. Every sarc patient should assume that daylight will detrimentally affect them.

The only way to tell if you are unaffected by your daily activities is to measure your D metabolites. The hyper-sensitivity slowly disappears as the antibiotics kill the bacteria.

I know that Sarcoidosis patients have skins which are hypersensitized to sunlight. Does the use of UV Sunblock creams reduce the amount of Vitamin D we get while out-of-doors?

No, UV creams have no effect whatsoever on our body's production of Vitamin-D metabolites. Neither does lightweight clothing. Even if we totally try to cover all exposed skin, the light reflecting from the ground into our face and necks creates too much Vitamin D, over the course of an hour or so.

Studies have shown that exposed skin produces most of its Vit D within 10-20 minutes, and a sunbathing body will get a dose of about 10,000 IU in that short time.

Here is a study from Australia and a study from Spain, both showing that there is no difference between the D levels of folks whether they use UV block creams or don't use them.

quote:

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Originally posted by Mo:
Do you think the vitamin D issue is specific to sarc patients, and perhaps not as much in LD? (aside from the light sensitivity some of us experience as a neurologic symptom)

Mo

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I think the best way to tell is to do the testing of the D-metabolites. If those are high, we probably need to avoid light.

If not, then we are probably OK in the sun.

The whole idea of avoiding the sun is based on the premise that it encourages overproduction of 1,25-D in those who are already susceptible to overproducing it. 1,25-D is part of the inflammatory cascade.

I am already on the protocol I've read it and read it again and still can't tell if I will need to stay out of the sun.

If I cannot, then I will forego the Benicar cause I'd never make it even the shade if I can't get sun while taking the Benicar.

Please do not refer me to the Protocol that I have even a hard copy in my hand and my doc has one, also.

thanks guys, I guess I'm just confused.

It's possible that we won't all have this vitamin d issue. It's just that for Sarc patients it's very common and gives them a way to measure their progress, besides symptom relief.

I LOVE the sun. I am a light addict. Feel awful in dark rooms, so if I've got elevated Ds I'm going to be in big trouble.

I AM however, making an effort to wear UV protective sunglasses more, and I can tell you that the Benicar is having a remarkable effect on the way I feel, so perhaps the D is not an issue for me.

I DO believe it's going to be an issue for my daughter as she's very light sensitive.

I'm quite sure that she and I share the same organisms, however they may create different problems depending on the host.

I believe the making more of it is a Sarc thing and would not apply to LD patients.

Just took mine and it was 81/44...I have not taken my second Benicar today. It's due real soon.

to be honest, I don't really understand the whole Vitamin D thing. I'm waiting to get my test results, and try to figure it out from there. These are not your standard vitamin D tests either, from what I understand.

The only caution I would have for you is that I do recall Trevor saying that a lot of doctors don't know how to interpret your D results.

And that even though one test can look very low, it can actually belie the truth of the matter, which is that your body is not handling D properly.

Are you still taking D supplements? I've read at the Sarc site where other patients started with D supplements advised by their doctors, and Trevor explains why this is the worse thing they can be doing.

If you're taking them, have you ever stopped for a while and did you notice any change in your symptoms?

That could be a small experiment you could try. But if you don't get tested, and don't notice any overt symptoms, like photosensitivity, or feeling sick after being in the sun, then you really won't know for sure.

If the benicar is helping, then that's great. However, the D is involved in the inflammatory cascade and the herxheimer reaction somehow. If you have high 1,25-D, and don't reduce it before starting the antibiotics, you can get really sick from an extreme herxheimer.

When you do start on the minocin, it's important to start with a very small dose. Like 25 mg. That's what I'm going to do. And now that I'm feeling so much better, I'm going to wait, maybe another week as advised in the protocol, before starting the minocin.

Everyone on the Sarc site says that you won't go too low, but I really think you should go over there and report your results and ask them. They will answer you.
www.sarcinfo.com

Rosie, I know it's hard when you've got the brain fog this illness causes, but you need to be sure you're doing the protocol correctly. You really need to have someone guiding you.

Trevor has said that doing the protocol incorrectly can make you feel worse. So please try to be sure each step of the way that you're clear on what you're doing.

penny

My real concern right now is my BP and I must go lay down as I don't feel good and I'll check back about this when I can.

Thanks guys,

Hugs to you; what a stressor this all is.

Also, it was my acupuncturist who discovered that I was a candidate for neurally mediated hypotension, not my old doc. I honestly don't know what our doctors are doing sometimes. Sleeping on the job?

penny

Dr. trevor told me I might want to go to 20 mg every 6 hours rather than 40 mg every 8 hrs. But my wooziness only lasted for one day so I'm still doing the 40.

You could also be experiencing a herx, as your immune system comes out from under the burden it's been trying to function under.

If your 1,25-D levels drop rapidly (this is an angiotensin response that Benicar blocks) you will experience a herx, even without any abx.

penny

i wouldn't take another Benicar until tomorrow if i were you. Call your doctor Monday and let him know what's going on.

Have you taken your BP while lying down? Is it any higher then?

We are all pioneers on a new frontier here. It behooves us to get the proper testing done FIRST, BEFORE starting Benicar. That way, if someone gets into trouble, Trevor Marshall can help figure out why and what to do about it.

I strongly suspect that late-stage Lymies might actually represent a sub-group of "atypical sarcoidosis" patients, based on a couple of abstracts I've found about granulomas in the bone marrow of LD patients. (I intend to try to get a copy of the complete articles ASAP, but I haven't done so yet.)

Anyhow, my main point is that Benicar might turn out to be a very promising therapy for many of us, but we owe it to ourselves and to others who follow after us, to get the lab work done first. Then, we will have a baseline for the purpose of guiding our therapy and to prevent us from getting into trouble -- not to mention causing our prescribing physicians to get into trouble for going along with the idea.

Rosemary, I'm not chiding You for failure to do this. I can easily understand why you did what you did when you did it. It's just that I want to emphasize the importance of not making the same mistake (i.e., failure to get lab work done FIRST) for benefit of anyone else who is thinking about trying Benicar. We can all learn from your mistake.

I admire and respect Free2Reckon's wonderful leadership and guidance regarding Benicar and the Marshall Protocol in every other way, but I take strong exception with his suggestion that the lab work isn't necessary. Perhaps for him, in his own case, it might not be necessary. However, for the rest of us, I think that suggestion is a bad idea.

I know that it's tempting not to want to spend any more money on lab tests when we have all already spent a small fortune on other medical expenses, but I'm convinced that it will save us all a lot more money in the long run to have the advantage of the lab data to guide us.

Besides, the lab tests aren't all that expensive, in the relative scheme of things. Byron posted elsewhere that it's somewhere in the range of $280 - $350, if I recall correctly, but I haven't checked it out yet myself. That might be for just the two Vitamin D tests, and it probably doesn't include ACE. ACE is a pretty routine test, so I'd be surprised if it costs too much extra though.

I posted the link to the Phorum (discussion group) at the SarcInfo website in my previous response, above, but here it is again -- so that you can see for yourself why the lab work at baseline (i.e., before starting Benicar) is so important.

I do, however, see your point as well, and, if I weren't already experiencing symptom relief as I have already started this, I certainly would not only consider it, but, would highly recommend testing for the reasons you stated above.

Again, thanks for the reminder. However, I believe that anyone trying this that is not chronic, and, has not tried years of treatment with no good results, most definitely get the testing first.

As for those of us who are desperate, such as myself, I think maybe we don't have a choice, testing or not.

Did that make any sense? I just don't know.

Again, thanks for your reply and well as all the other's who have replied.