Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

 

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Vitamin D - when will the level go down?
Author: Kevin Brennan (---.dsl.lsan03.pacbell.net)
Date:   10-19-02 11:58

I was diagnosed with sarcoidosis six years ago and my health has continued to decline since then. I recently became aware of the "Remission in Sarcoidosis" paper and imediately removed all vitamin D from my diet and restricted my exposure to sunlight as much as possible. The change in how I feel was dramatic, migrane headaches are gone, dizzyness (vertigo), muscle and joint pain are gone. I convinced my Doctor to perscribe the vitamin D blood work, which just came back. The 1,25-D was 44.3 which is high, but the 25-D is 33.6 which seems very high since I have avoided vitamin D for the month previous. Does anyone know the conversion in case the 25-D is not in ng/ml? My pulmonary specialist ordered more blood work including ACE, what are the "normal" levels and standard deviations as well as the pulmonary function tests?

Of late I have had asthma, which is something new for me. Staying out of the sunlight seems too help the astma but it is hard to correlate. How long does the ARB therapy and minocin take to get the 1,25 D levels back under control?

I have been taking 100 mg of Minocin three times a week, 80 mg of Diovan (for ARB therapy) once a day for the last week. These two medicines were started in reaction to the article "Remission in Sarcoidosis". I also take Advair twice a day for asthma and Proventil (as needed for asthma).

I have removed all vitamin D from my diet for the last month and have restricted my exposure to sunlight as much as possible

 
 Re: Vitamin D levels
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-19-02 12:20

Kevin,
The Vitamin D in your body comes from two sources
1. Solar synthesis in your skin from going out of doors
2. Intake of Vit-D in diet

The level of 25-D in your body (which can be stored in body-fat) comes from
1. Solar synthesis in your skin from going out of doors
2. The 25-D stored in your body fat
3. Conversion of dietary Vit D from food and supplements

The level of 1,25-D in your body comes from two sources
1. Direct Solar synthesis in your skin from going out-of-doors
2. Conversion of the 25-D in your body by both the kidneys and the sarcoid inflammation

Only the 1,25-D is the active hormone, the other substances are just intermediary metabolites. Only the level of the 1,25-D determines the effects from all these sources upon your body. The level of this hormone is very low, and it is very hard to measure. This is why the 25-D level has historically been used as an indicator of 1,25-D activity. However, this has led to errors in our understanding of the effects of the D-metabolites. Only the 1,25-D level is the one that drives our body and our symptoms..

When you discontinue the dietary Vit-D, you still have to deplete the 25-D stored in your body-fat. Depending on the individual, this can take from 2-12 months (it takes a while to work that storage down (and hence the 25-D level down)). 25-D is not a very expensive test, and it can be performed every couple of months to track your progress.

Click here for a graph of 25-D vs time taken from "Gains in Bone Mineral Density with Resolution of Vitamin D Intoxication." Annals of Internal Medicine, 1 August 1997. 127:203-206

The time scale is years, and you can see four graphs for 4 different patients. The 25-D of one patient fell in just a few months, while one took nearly a year to use up all the fat reserves (the 25-D axis is expressed in the SI international unit, nmol/L , which is divided by 2.5 to get ng/ml).

Nevertheless, the level of 1,25-D in your body can vary very quickly (4-6 hours) when you are exposed to sunshine or have a dietary intake. These surges are what takes the level up to a value which causes symptomatic problems. After the exposure, the 25-D takes a week or so to stabilize down again to the steady state value determined by the fat storage.

I wish there was some drug that could immediately use up all those fat reserves, or block new D intake. But there is not. The ARBs (in the correct dosage) will make you less sensitive, but not immune. Exercise and weight loss will get the fat storage down more quickly, but it will take a lot of willpower.

Once you start spending your time indoors you notice an immediate benefit (within a few weeks). To get back to something like "normal" will take 6weeks-6months, depending on your exposure history.

Diovan taken once a day is not very effective in lowering the 1,25-D symptoms. The reason for that is given in this paper. Benicar is a more modern ARB which seems to block receptors in more organs than Diovan. If your doc thinks that our recommended 40mg of Benicar every 8 hours might be too much for you, it is possible for him to start you on a dosage as low as 20mg every 8 hours. IMO, you do not need to wait for the Diovan to clear your system when changing ARBs.

..Trevor..

 
 Re: Vitamin D levels
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   10-19-02 16:24

Dear Trevor:
Along with the Sarcoidosis of lungs and some other areas, it seems that I might have developed Sarcoidosis of the Parotid Glands. Right now it is on the right side only.......does it usually involve both sides? I am now on Keflex along with my medications and Tetracycline 500 mg. daily.
The pain has been severe. I saw the doctor Friday and am due back to see her next Friday, but if the pain gets worse I will have to call her earlier.
I also wanted to ask you if Sarcoidosis of the Parotid Glands causes severe pain?
Any suggestions or comments would be appreciated.
Caroline McG.

 
 Re: Vitamin D levels
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-19-02 19:15

Caroline,
The parotid glands are salivary glands situated in front of and below the ears.

There are several reasons you may be having problems with your salivary glands. I am not your doctor, and I have no idea where the pain is coming from or what sort of pain it is, but, given the medications which you are taking, I would be hesitant to come up with a diagnosis of sarcoid inflammation in the parotid based purely on pain. Certainly inflammation of that area might be causing pain, but is it the Granulomatous inflammation of sacoidosis?

In your case your 25-D value was 25.5 and your 1,25-D was 43.3
Both are high. I told you to work on getting that 25-D value down to 12-15 ng/ml area so that your 1,25-D drops into the 20-30 pg/ml range. You really need to focus in on achieving that.

Your steroid inhaler will be reducing the 1,25-D levels a little, and you need to get the D metabolites down if you are to cut down on the inhaler (which you must try to do).

You might also ask Doc to consider changing you from Tetracycline to the every-other-day Minocin, which will be more effective against the wide spectrum of bacteria which can cause sarc inflammation.

..Trevor..

 
 Re: Vitamin D - when will the level go down?
Author: Bill Murray (---.ri.ri.cox.net)
Date:   10-27-02 18:11

Hi Trevor, It has been a while since I posted here. I have been out of it for a little bit now. I have a totally new doctor and he seems to be a very caring doctor. Hpefully he will be able to come up with some answers for me. I still have the fevers, more than ever lately, pain in my body has progressively gotten worse, but he is trying to help me with that. I just had a gallium scan last monday and the good news is they didnt find anything other than the hemangioma I already knew about in my thoracic vertebrae. Unfortunately, I still have not found any granulomas to prove I have sarcoidosis. kind of a catch 22, huh??would it be possible to have these things maybe in my legs, where they did not scan?? also, all of my lab tests cae back good. he ran all of the vitamin d tests and the ace level again. I know that the ACE can be better due to the prednisone(which by the way he is weening me off of!!), but can this also affect the vitamin d levels?? Again, maybe he is saying they are fine and they are not. That is what happened with my last doctor. The tests showed only slightly above the normal range but when i told you , you said they were high. This doctor is the first guy to think of the hodgkins disease theory also. He is my fathers doctor and when my father told him my symptoms, that was the first thing he thought of, so we areprobably going to explore that a little more. one last thing, have you ever heard of thepain medication Norco?? This was the one he prescribed me. It has more hydrocodone than the last stuff I had but I felt like it didnt work as well??is this normal??well I hope you feel better, take care! Bill Murray

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-27-02 18:46

Hey, Bill,
Great to hear from you again. Hodgkins is a differential diagnosis, both produce high levels of 1,25-D but usually Hodgkins progresses more quickly, and is easily found on gallium scan. But Hodgkins gives B-cell granuloma while sarc gives T-Cell granuloma.

At 61 pg/ml, your 1,25-D was well above the 45 maximum recommended in Merck (which your doctor will probably readily accept) and above the 42 suspected of complications in this Hodgkins study. The lab ranges are a joke. Only sick people get this hormone measured, and the lab data is overweight with undiagnosed sick patients. Forget the lab values, show your Doc the 20-45 from Merck...

Gallium scan is often not very sensitive, and it is quite reasonable that it will not have picked up sarcoid inflammation. When you get your 25-D measured (so that we can calculate a D-ratio) it will be easier to make guesses about the extent of active inflammation, and postulate why the GS may not have seen anything.

Prednisone will lower the ACE profoundly (15mg took mine from 60 to 15 in 8 months) but it also raised my liver enzymes, alkaline phosphatase and Triglycerides, alarmingly, and they stayed high for a decade, until I finally figured out how to bring-on remission. Pred does lower the 1,25-D somewhere between 25 and 40%. Not enough to suppress the damage done by the remaining high level of 1,25-D.

Norco is similar to Vicodin, but with more narcotic. If it doesn't work as well then change back to Vicodin, which is pretty commonly used these days.

Good to hear from you again, Bill, keep up the good work (and please say hi to Kerrie)

..Trevor..

 
 Re: Vitamin D - when will the level go down?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   10-28-02 10:12

Dear Bill:
I looked onto the website for physicians treating patients with Sarcoidosis in the area. One was listed in Pawtucket, R.I. His name is Dr. Ettensohn. Have you heard of him?
My physician wants me to find a physician who is a specialist as she has tried her best and although she intends to treat me for medical problems she welcomes another doctor's advice. She does not understand the Vit. D 3 level theory. I have given her print-outs and papers but It is still vague to her.
Have you found anyone?
Caroline McGuirl

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-28-02 10:28

Dear Caroline McG,
You do not need a specialist to prescribe Minocin. You will even find physicians who will prescribe it for Acne over the Internet. It has a lot of reported side effects, but so does Doxycycline. It is nevertheless widely prescribed for Acne and given to teenagers. So why is it being witheld from you?

What you really need is a primary care physician who is prepared to either
1. Listen to the advice and study results of other physicians, or
2. Spend the time to research and understand the issues himself/herself

I suggest you approach all the Internal Medicine specialists in your area and see if any will take you on as primary. IMO, Your needs are not for a pulmonary specialist, but for somebody capable of looking after all the organs that sarcoidosis might affect.

..Trevor..
ps: In any case, you have high levels of D metabolites and you need to focus on getting them lower. Maybe you need a nutritionist to help you with this? Just where is all that 25-D coming from?

 
 Re: Vitamin D - when will the level go down?
Author: Caroline (---.win.org)
Date:   10-28-02 12:35

Hi Caroline!

I agree with Trevor. I have been seeing a pulmonary that specializes in sarc. She is not interested in the D theory. In fact, I doubt she has read the papers I have taken to her twice. The first time she was abrupt and the second time said 'we'll see'. That was when I told her I would complete the 6 month trial of methotrexate (over in December) and if it is of no help that I wanted to be prescribed the antibiotics and arb's.

It was recommended that if the MTX doesn't help, I had better go to IV chemo and brain radiation. I think the doc's just want to 'cure' you no matter what. Maybe I am paranoid but I don't think I am. Keep trying and don't give up!

My best from the other Caroline
p.s. MTX has helped me as much as candy corn but no sugar high (8-)

 
 Re: Vitamin D - when will the level go down?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-28-02 12:57

Caroline,

I tend to disagree with your assessment that doctors want to "cure us" no matter what. I think that some doctors want to "treat us with their treatment" no matter what. Sort of letting us be the guinea pigs. In this country, treatment is supposed to be done with the informed consent of the patient, so they cannot do it without your consent. Sometimes the doctor may be intent on testing to see the outcome of the treatment plan they propose; sometimes they may be intent on proving their plan is better than what you have suggested.

In truth, the treatment plan should be agreed-upon by patient and doctor. It is supposed to be a team effort. The treatments we are offered, such as prednisone, methotrexate, etc., are NOT CURES for sarcoidosis. Agreeing that what they offer is no cure, how can doctors turn up their noses at a treatment option, such as Minocin, that has provided positive results with little risk to the sarcoidosis patient? Are they offended when this suggestion comes from the patient? Doctors should consider any viable option in something like sarcoidosis - that has no cure, but wrecks havoc on the lives and relationships of people.

Belinda

 
 Re: Vitamin D - when will the level go down?
Author: Caroline (---.win.org)
Date:   10-28-02 13:06

Hi Belinda,
That is so true--a guinea pig! I have absolutely NO sense of understanding as to why a doctor will not try a method other than prescribing poison. In my case, they want to irradiate my brain after the poison doesn't work! A statistic rather than a person.
Caroline

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-28-02 13:30

The key thing is to get your Doctors to specify what measures they will be using to make sure their 'treatment' is doing something beneficial.

Merely being told "The Thalidomide will stop your sarcoidosis from getting any worse" is not good enough, IMO.

Also make sure that there is some monitoring plan in place to quickly pick up any possible side effects, short and long-term.

..Trevor..

 
 Re: Vitamin D - when will the level go down?
Author: Bill Murray (---.ri.ri.cox.net)
Date:   10-29-02 15:28

Trevor, I know you have probably given me the link many times but could you possibly give me again the papers i should give to my new doctor that say exactly what to look for in the vitamin d levels? and to caroline, I did find a new doctor. He is in boston. A little bit of a drive but so far he is well worth it. thank you for everything. Bill Murray

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-29-02 15:44

Bill,
The Doctor's version of our "Remission in Sarcoidosis" paper says how to use the D-Ratio to track sarcoid inflammation. Click here to access a copy of it from the British Medical Journal's 'Clinical Medicine' Online Site.

This relies on the fact that the 1,25-D generated outside the kidneys (in the sarc granuloma) is out of the control of the kidneys, and therefore is generated more vigorously than it would be in 'normals'.

We have not sought to prove our assertion that the D-Ratio is indeed a measure of sarcoid inflammation. This is because anybody who understands the Molecular Biochemistry does not need this to be proven. It is obvious. Unfortunately we have had a number of Doctors who do not understand biochemistry, and who say "it is not proven". I can't help those doctors. Believe me, it is obvious.

I will send you a copy of the "Angiotensin Hypothesis" paper that describes the Molecular Chemistry in more detail. Please don't expect Doc to understand that paper, however. So far it has gone straight over the heads of 80% of the physicians who have reviewed it...

..Trevor..

 
 Re: Vitamin D - when will the level go down?
Author: Kathy (65.121.96.---)
Date:   11-09-02 15:39

I absolutely disagree that physicians "want to cure us, no matter what". I was seen in a specialty facility, and when my symptoms did not fit their agenda, I was told my illness was "psychological", and basically dismissed.

In the meantime, over the last three years, I have been to my ER (I work at the hospital) many, many times - and the ER doctors are so sympathetic, and yet don't want to do anything to hurt me - they really don't know what to do for me! Thank God I found a local physician who understands me and my illness; ER trips are no longer necessary, since my doctor actually treats me. My doc and the ER docs are so caring, and care about me on the appropriate patient level - with dignity and humanity.

I've said many times in this site to be careful and be aware of any agendas; research funding, rigid treatment methods, etc. Of course I work with my local doctors; and they see me on other levels. However, if I go to a specialty facility, I expect superior thinking and treatment. My docs here spent over 2 years deferring to the specialty hospital - and we are all disappointed in them, but we are leaving them behind and moving on - and thanks to this site, in a much better direction!

I've also said before to ASK QUESTIONS - if something concerns you, hurts you or doesn't sound right, trust your instinct! It's YOUR health they are dealing with - and you are the one that should be treated solicitously - not the other way around! I personally think that unwillingness to consider other ideas or options is a bad sign in a physician.

Kathy


 
 Re: Vitamin D - when will the level go down?
Author: Waynette Traub (---.the-thompsongroup.com)
Date:   11-11-02 13:59

Trevor,

Can you tell me how to present some of this new information on treating sarcoidosis to my doctor? I quit going to my pulmo doctor about 3 years ago. I asked to be taken off of prednisone because of the side effects were killing me or I was going to kill myself. He said that prednisone was the only to treat the disease. I eventually lowered the daily dosage to where I was not longer taking it. The disease was in remission at the time and I was not searching for alternative treatments.

Well... it's back! I would like to present to my primary care doctor the newest information I have seen here about Vitamin D and Minocin. There is misinformation all over the internet and I don't want him to think I am going to waste his time reading research articles on the internet. He knows I refuse to take prednisone again. I told him I would rather die early than die much older but have miserable for all those years. (I couldn't recognize my face in the mirror when I was on prednisone.)

I'm having a lot of trouble breathing and would like to have a professional and informed way of this new information. If you have a good idea for me I would appreciate your help and guidance.

I wish I could have found this site 4 years ago. Great site. – Waynette

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-12-02 04:57

Waynette,
Are you taking any other medications, natural or pharmaceutical, at the moment?

..Trevor..

 
 Re: Vitamin D - when will the level go down?
Author: Waynette Traub (---.the-thompsongroup.com)
Date:   11-12-02 06:34

I just take Wellbutrin for depression. (This is the only med that has helped me without the side effects of other anti-depressants.)

Imitrex shots for migraines

I had started taking vitamins for about the first time in my adult life in late July or August. I ran out of them and have not replaced them. I looked at the empty bottle still in my office desk and it had vitamin D. I drink milk every morning with my rasin bran cereal (fortified with vitamins!).

Although the disease is back in my life, the strange thing about it is I have been able to stay active. I run 4 miles a day now and workout with weights. When I am running, is when I can breath the best. No pain, no shortness of breath, no cough. I run at night when I get home from work on in the mornings on the weekend.

I was taking the vitamins thinking I was adding a positive to my life. I know better now.

– waynette

 
 Re: Vitamin D - when will the level go down?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-12-02 22:41

Waynette,
Kellogs Raisin Bran Cereal and 1 pint of fortified milk will give a normal person more Vit D than they need. Additionally, any outdoors exposure adds sunlight (and hence more Vit D).

But this amount of Vit D (200IU) will make a sarc patient quite ill, IMO.
Find a cereal that is not enriched, and, if necessary, carefully supplement your diet with high quality vitamins that don't have D in them. Obviously you need to get a non-fortified source for milk, as this alone gives you your RDI in every pint...

It is great that you can exercise. It certainly sounds hard to understand why someone who can run 4 miles a day was being prescribed prednisone

I am not aware of any problems with the two medications you are using, except to say that the migraines are frequently due to high levels of 1,25-D so you should get your D-Metabolites tested to see if that may just be the problem...

Unfortunately, every doctor needs to have a different presentation. Some are eager to learn, open to new ideas. Some can immediately understand the biochemistry and embrace the etiology. Some have absolutely no interest and must be replaced. There are a number of threads on SarcInfo discussing how to approach docs. It isn't easy, but is necessary if you are to get ARBs and Minocin Antiobiotics. Start with the "angiotensin Hypothesis" paper I sent you, and if that is too technical, the "Remission in Sarcoidosis -doctor's version"

A good way to start might be to show them the table in the "Angiotensin Hypothesis" paper with the high values of 1,25-D from Sarc patients, then ask them to measure yours to make sure yours isn't high too

..Trevor..
ps: Milk is fortified at 400IU per quart. The RDI for adults <50 is 200IU.

 
 Re: Vitamin D - when will the level go down?
Author: Waynette Traub (---.the-thompsongroup.com)
Date:   11-13-02 07:06

Oh... I was not able to do anything but water aerobics when I took prednisone. It was painful to even walk then because I was so swollen everywhere. It did help me breath better but that was it. (I hate the medicine with a passion.)

After it went into remission I was able to do step aerobics, running and weight lifting. I have been exercising since. That is the only good part about this disease in my life - I now exercise daily.

– waynette

 
 Re: Vitamin D - when will the level go down?
Author: Jillian from North Dakota (65.173.4.---)
Date:   11-23-02 15:02

Trevor,
A couple of people that I've recently spoken to have insisted that vit. D is manufactured in the spleen. Do you have insight on this?
Thanks, and 'til later,
Jillian

From Admin >>>Jillian, those folks are totally wrong. Totally, totally wrong. 1,25-D is a hormone and is primarily manufactured in the kidneys and skin. If there is inflammation in other tissues, such as the lungs, the lymph nodes and spleen they will contribute to the level of circulating 1,25-D, but it is not their primary function to do so.
You can read the technical stuff about the synthesis of 1,25-D by clicking here<<<<<<<

 
 Re: Vitamin D - when will the level go down?
Author: Mala (---.speed.planet.nl)
Date:   01-26-03 18:19

Hi there I am mala from Holland,

First of all My english is bad, so I am sorry for this
I also have sarco. Eye, Lungs, hips, bones . And I was paralised in my face.
At the moment Neurosarco is active, verry dissy, seesick, feeling like i am falling back ,verry bad feelings with headache in my head, I see everything twice (double) and very painfull neck which is also verry hard. I am having prednison for 2,5
years now from 45mg. I use now 2,5mg pred. and 100mg Dyclofenac a day.

I had a question I just found this site and going to read it all but am i right if i say; i must stop to take food with VitD of do i have to take more VitD to feel better.

thank you
Mala

 
 Re: Vitamin D - when will the level go down?
Author: Mala (---.speed.planet.nl)
Date:   01-26-03 18:20

Hi there I am mala from Holland,

First of all My english is bad, so I am sorry for this
I also have sarco. Eye, Lungs, hips, bones . And I was paralised in my face.
At the moment Neurosarco is active, verry dissy, seesick, feeling like i am falling back ,verry bad feelings with headache in my head, I see everything twice (double) and very painfull neck which is also verry hard. I am having prednison for 2,5
years now from 45mg. I use now 2,5mg pred. and 100mg Dyclofenac a day.

I had a question I just found this site and going to read it all but am i right if i say; i must stop to take food with VitD of do i have to take more VitD to feel better.

thank you
Mala

 
 Re: Vitamin D - when will the level go down?
Author: Caroline (---.win.org)
Date:   01-26-03 20:02

Hello and welcome Mala!

NO vitamin D! It is best to read the 'Patient Tutorials-Essential Reading' at the top of the page first. This will give you a basic understandng of how you were born with a genetic predisposition to sarcoid. Our body does not regulate D in the same manner as others. There is also a thread for newcomers to answer your questions. I am not the best at explaining and will leave that to others.

I saw your post and wanted to welcome you here. You will learn alot and find how to help yourself. Starting now you need to avoid sun, protect your eyes properly and skin, do not eat any foods fortified with D or take vitamins with D. I am not sure of dutch cereals but in the states it is very high in D, oily fish such as salmon is very high in D. I understand that fresh fish and dried fish is very plentiful in Holland.

If you have difficulty with english, maybe someone can help you? My son's girlfriend is from Doerdreict (that is probably not spelled right). She is very fluent in english but we Americans use so many words that can mean the opposite, sometimes it was difficult to explain to her. I am told we speak american instead of true english.

I have neurosarcoidosis also. I am being helped very much! You have found the correct place for help. Read as much as you can.

 
 Re: Vitamin D - when will the level go down?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-26-03 20:40

Mala,

Welcome to SarcInfo.com! Yes, you read the information correctly, experts who understand biochemistry recommend that patients with active sarcoidosis avoid sunlight and foods and supplements (pills) containing vitamin D. Only a few foods naturally contain vitamin D: fish and fish oil, shrimp, oysters, liver and egg yolk. You will need to also avoid foods with unnatural, added vitamin D. All milk in the US and all margarine in some countries have added vitamin D. Breakfast cereals are highly fortified with D, along with many breads, bakery goods and foods made with fortified milk. Avoid these, along with vitamin tablets containing D. Read ingredient labels.

More importantly, you need to protect your skin and eyes from sunlight and bright lights because your body manufactures most of your vitamin D in a photosynthetic reaction. You can read more from these tutorials:
"Remission in sarcoidosis"
"How does Doctor measure my ACE, and my D-metabolites?"
"Protecting your eyes in sarcoidosis"
or these threads:
"If you have Sarcoidosis, you must stay out of the Sun"
"Minocin treats Lymph, Skin & Lung Sarcoidosis'

There is a lot more information here, so spend some time reading and ask questions if you need help.

Best wishes,
Belinda

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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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Sarcoidosis


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