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Belinda
Research Team
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Posted: Thu May 12th, 2005 23:54 |
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Ken,
Ketoconazole 2% cream has been presented as an option for protecting against cutaneous production of the Hormone 1,25-D when light or sun exposure cannot be avoided, and on those areas that cannot be otherwise shielded from light.
We would never expect Ketoconazole cream would provide that protection for a three-day canoe trip in the sun. Surely you understand that getting a sunburn also means way to much vitamin D for people with Th1 disease and a dysregulated vitamin D metabolism.
Belinda
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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 214 |
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Posted: Fri May 13th, 2005 19:11 |
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Belinda says: "Surely you understand that getting a sunburn also means way to much vitamin D for people with Th1 disease and a dysregulated vitamin D metabolism."
Oh, I understand all right, but I haven’t yet found a salmon river that runs through a cave! This was a vacation, and I accepted the consequences before I left. Still, it would be nice to have a magic cream that would protect us.
In my fevered wonderings, I did come up with a more serious concern. Keratinocytes can produce both 1,25D and 25D. Does K-cream also stop production of 25D? Or by preventing 1,25D production are we switching to increased 25D production.?
Of course, I don’t intend to get enough sun (for a while) to matter either way.
Ken
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DNStog
Member Advocate
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Posted: Thu May 19th, 2005 06:25 |
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Ketoconazole 2% cream works great for me. I run short hop errands about once a week and use K2 on face, neck, hands and wrists. Did find out the hard way that I must wear a hat when my head is exposed to the sun... ouch, the worst herx I ever had was five minutes in sun without a hat. K2 allows me to drive without my big floppy hat blocking the view and on particularly hot days, I use it on my feet so I can wear sandals. 
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Chris
Member Advocate
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Posted: Thu May 19th, 2005 15:14 |
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Ketaconozale cream works for me.
I have a one-hour each way commute, into the sun
each way.
If I put on the K cream for the morning in the
sun, and then drive home after dark, I get home
and am some what tired. I do this with a hat &
full face and neck coverage.
One day, I forgot the K cream in the morning.
by 1:30 in the afternoon, I start shaking
intermittently (usual sun exposure symptom), enough
to spook everyone I work with.
I don't think the effect lasts 8 hours, but I haven't
tested it either.
I might be more sun sensitive than you. About 4 years ago, I tried going on a canoe trip down a Wisconsin river.
I got too sick to continue by the third day.
A year and a half ago (prior to starting MP), I went
out hunting for a couple of days on a very bright,
very cold Minnesota January weekend. On the third day,
the shakes and a fever started.
Now, I'm much more sensitive to the effects of
sun exposure, it hits after 4-6 hours. I don't think
that it is because the effect has gone up, it's just
that I feel so much better before the sun exposure
that the effect is much more dramatic.
Your mileage may (and does seem to) vary.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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John D
Member in Phase 3
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Posted: Thu May 19th, 2005 18:50 |
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As far as I know, I don't seem to be as sensitive to daylight exposure as many of the folks reporting and on the MP. I was not as diligent about avoiding indoor light and using NoIR glasses as is suggested and I did not block sunlight from entering my cave while in phase 3, this last winter. So I may not be a good example for reporting on K cream, however my recent D tests indicate my 1,25 D is under control and quite low.
I have used K cream on my face whenever I planned to be outside for extended periods, in the last 4 months. I have yet to notice any obvious reaction to daylight exposure, including a half day skiing, and more recently, doing yard work on sunny days. I am probably halfway through phase 3, so it may be that it would make no difference if I used K cream or not. John Dresser
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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kathleen
inactive member
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Posted: Thu May 19th, 2005 20:27 |
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The K cream also works very well for me.
I now (since being on the MP) have extreme and immediate reactions to sunlight in my eyes and slightly delayed reactions to skin exposure. I need to go for errands a few times a week, and now it's light past when stores and the library are open. I put on layers of clothes and the huge hat, Noirs and the K cream on my lower face and neck and I'm just fine.
Nice people say that I look mysterious, like a movie star. I'm sure that other people just think that I'm weird. I think that I'm doing the right thing.
Best luck, Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Memoking
inactive member
| Joined: | Wed Apr 6th, 2005 |
| Location: | Illinois USA |
| Posts: | 314 |
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Posted: Sat May 21st, 2005 12:45 |
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Where do we get the K-cream? is there any side effects if you wear it too long or put too much on? I think I read something about side effects..
But if you wear it just to go outside briefly, like in short errands, is it Ok to wear that? and do you need to wash it off when you get back inside?
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Mary..Sarcoidosis. 1,25D=56..25D=6..Began Benicar 20mg q3hrs..9/4/05. Granulomas in arms, hips,legs. Painful lymph nodes hips, armpits. Pain in chest,back,head. Avoiding sun/bright lights/Vit D. Using NoIRs
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John D
Member in Phase 3
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Posted: Sat May 21st, 2005 14:53 |
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Memoking wrote: Where do we get the K-cream? is there any side effects if you wear it too long or put too much on? I think I read something about side effects..
You will need to get a prescription from your doc to get the 2% Keto which we need for the best protection. 1% K cream is available over the counter.
I don't think we need to worry about side effects, as we should still try to limit our daylight exposure and therefore not plan on needing it for all day, every day outdoor adventures.  I believe it is beneficial to leave the cream on after you return to your cave.
It is very expensive, so I find I do apply it very sparingly, so I do not worry about applying too much. I think you can get 6 ounce tubes, which are most economical. John Dresser
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun May 22nd, 2005 02:25 |
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Memoking,
To save time, we have compiled the answers to many of your questions in our Frequently Asked Questions section. The list of FAQS is long but they can be easily found in this alphebetized:
MARSHALL PROTOCOL FAQs.... Easy Finder
Your question about K-cream is answered here:
How does ketoconazole cream work?
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Chris
Member Advocate
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Posted: Mon May 23rd, 2005 18:37 |
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John D,
Were you ever sun sensitive? I'd sure like to be able to go back into the sun again. I wonder how much the sun sensitivity depends on how much the eyes or skin are involved with sarcoid.
If I were you, I'd count a few blessings. Having sarcoid isn't one of them, but not having sun-sensitivity is one, and being in the west end of God's country so you can enjoy the outdoors is another. (I think God's country starts a few miles east of the Mississipi and goes west, but am broad minded about it.)
Chris
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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John D
Member in Phase 3
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Posted: Wed May 25th, 2005 02:54 |
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Chris,
Well.....I grew up and spent my first 50 years a few miles west of the Mississippi (western burbs of Mpls) so, yes, I agree........it starts there and gets even better closer to the Continental Divide 
I imagine I was light sensitive and just was not very aware about it. I have had sarc so long, I think one tends to get conditioned to the sensitivity and just learns to live with it.........it tends to seem normal over time. Just like a lot of aches and pains that are caused by sarc and the docs tell us it is normal to experience these things due to the aging process. Sarc also can develop so slowly, over a long period of time, so that probably allows us to adapt without realizing we are sensitive.
Dr. Marshall promises us that if we stick this out, we will learn that "normal" has a much better definition than we have become used to! I'm sure my eyes have been much more sensitive since starting the MP, but I don't seem to be as bad as most of the others. Since starting the MP, I have been good about covering up, but for the first 6 months, I also walked for an hour after the sun went behind the mountains, and noticed no significant setbacks to my progress.
So, I might not be the best source to say for sure that I never was light sensitive. I continue to experience sore eyes at various times of day.....could be related to not diligently wearing dark enough glasses when outside or when looking at the computer screen or TV indoors. Maybe this qualifies as light sensitive, but I read about others that report being much more sensitive than that. I still try to wear my darkest NoIRs when outside in the sun. If it is cloudy, I use 18% NoIRs a lot, and sometimes use my Maui Jim's.
I spent most of the last six months in my cave, but my cave has lots of south facing patio doors which allow light to flood into most of my living area. I can retreat to a little cove with my computer and get away from the direct light. I have no coverings over these light sources, and it was an unusually sunny winter here. Apparently all my transgressions did not penalize my progress much, as my recent D tests were surprisingly low.
I am still considering if I will get out to play much golf this summer, and part of my concern is being able to tolerate 5 hours in bright or cloudy sunlight. I will be using several pairs of NoIRs and covering up and will use Keto cream on my face. At this time though, it is more of a concern if I can walk 18 holes due to continued fatigue and muscle weakness. We'll see soon.
Chris, If you go to the phase 2,3 section, you can look at my progress in phase 3. (see JohnD in Phase 3). Perhaps that will help you estimate when you might be at a similar place in the MP and be ready for more light exposure. John Dresser
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Sarc- Lungs dx (biopsy)1985, pred 3yrs to 88. Begin MP:Feb/04 1,25D=58.1, 25D=18.1 Phase 2: June/04. Phase 3: Sept/04. Clean-up phase Oct/06. April/05: D1,25=13 25-D=6. June06: D1,25=31 25-D=11. Sept07: 25-OH D=18
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Chris
Member Advocate
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Posted: Thu May 26th, 2005 00:25 |
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John,
Interesting history, I was also in Mpls when the sarcoid hit in '83, having started close to the Iowa border, and working in Mpls for the first 15 years of married life. Going west was probably a smarter choice than my move east. Having sarcoid, but not in the lungs. did baffle the folks at Fairview Southdale and Mayo, so maybe going east was a good thing in some regards, as I did find an excellent doc who finally made the diagnosis.
My trips in the light not-so-fantastic have not been so kind to my VitD levels. And, I find that when I work, I unconciously push up the NOIRs to be able to focus on the screen better. Hopefully the prescription sunglasses on order will mean I don't need to do that anymore.
Thanks for your response.
Chris
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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rainbowcatcher
Member
| Joined: | Wed Oct 27th, 2004 |
| Location: | United Kingdom |
| Posts: | 432 |
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Posted: Sun Jun 19th, 2005 16:23 |
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Is ketoconazole known under a different name in the UK? I've ask two different Pharmacists and they said its not in the mims book.
Thanks,
Rainbow
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74yr old(mom) HX:Sarc/lung'85 HTN Tinn skin eruptions.eye pressure systemic burning.Diverticulitis.02/05 25D=7 1,25D=28; 02/06 25D=7 125D=13/ Paracetamol/(Acicdof & cranberry 4/07)diazepam.NoIR & light 6/05|4-6hr Olmetec Aug05| Mino Sept05| 03/06
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Offline
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Posted: Sun Jun 19th, 2005 16:32 |
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Rainbow
Nizoral.. see a search re UK here.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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