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 The material here provides useful background, but most of this site is now out-of-date.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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 *** POST YOUR TEST RESULTS HERE **
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-24-06 19:11

According to the phase one Marshall Protocol guideline, the following tests should be done:

Measure your D-metabolites: 1,25-dihydroxyvitamin-D & 25-hydroxyvitamin-D. Remind the Lab that the blood must be frozen for the 1,25-D assay. Please consult the patient tutorials for a list of suitable labs. It may also be helpful to measure % Lymphocytes, CRP, Alkaline Phosphatase, and Triglycerides. These tests will track systemic inflammation. The level of 1,25-D will also suggest the severity of the Herxheimer response to be expected. Your doctor may also want to assess your kidney function by testing creatinine and BUN.

Basic Blood Tests for the Marshall Protocol

Please post the results of your D-metabolites tests in this thread. Also include the following information:

Your diagnosis and/or symptoms
The date the blood was drawn.
The date you started Benicar, if you have started it.
What lab did the tests.
If the 1,25-D sample was frozen for shipment.
If you were taking Vitamin D supplements, including fish oil.
If you were taking prednisone or any other steroid.

You may post other test results also and we will comment on them if we can. Please include the lab ranges.

If you would like to read some of the previous posts related to this topic,

The most recent thread of about 100 posts is is located here.

The archive of 139 posts to 06/02/2005 is at this link.

The archive of 92 posts to 01/31/05 is at this link.

The archive of the 132 posts to 6/13/2004 is at this link

and the 136 posts to 5/25/2004 is at this link

The archive of the 200 posts from 7/29/2003 to 12/20/2003 is at this link

The archive of the 213 posts from 3/5/2003 to 7/29/2003 is at this link


and the 171 posts to 3/5/2003 are at this link

(a popular topic)

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: terri princini (---.qld.bigpond.net.au)
Date:   02-25-06 01:42

Hi lottie,

Here goes I will try get it right.
I had large lumps and hot swellings in my skin they biopsied two and result sarc in 1997 in skin and joints could hardly move, had rash as well.

Blood drawn for both Vit D tests 12/7/05
Results: 1-25 94 pmol/L (40-150) result date 29/7/05
-25 45 nmol/L (50-300) result date 18/7/05
QML did the tests and they put it on ice upon collection
I wasnt taking any Vit D suplements
I was taking prednisone, nebuliser using ventolin and atrovent, seritide accuhaler 500/50, codenine phosphate for cough, HRT prognova 1mg, Tofranil 2mg for stress, at the time blood drawn
I was not avoiding foods with Vit D
I was not avoiding sunlight although I dont go out in it much
I was not taking Benicar
Yes I was taking prednisone at the time blood drawn and prior to that in Nov 2004 on intravenious cortisone for several days.

I have since Dec 2005 being diagnosed with high blood pressure so now take Avapro (irbesartan) 75mg in the morning.
I have been on prednisone since Feb 2005 non stop., the nebuliser and seritide.
While having intravenious cortisone I developed steroid induced diabeties.

Hope this helps Lottie
Terri

sarc diagnosed 1997 in skin and joints. asthma, sinusitis, steroid induced diabeties,
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   02-25-06 03:46

Terri,

Thank you for the additional information. I did convert the figures to the measurements used here in the U.S.

Your 25-D of 18 ng/ml is lower than would be expected since you were not avoiding ingested Vitamin D, and it suggests that there has been a rapid conversion of this prehormone to the active metabolite 1,25-D, This test result is rarely in error. You will want to diligently avoid all sources of Vitamin D to get your 25D down to a therapeutic level of 12ng/ml or less. Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Your D ratio is 2.18. Anything over 2 indicates that a Th1 inflammation going on. Your 1,25D, is somewhat low, but since the sample may not have been frozen, and handled correctly the whole time before the test was actually run, your blood level may have actually been higher. And, Prednisilone can reduce the 1,25D by as much as 25 to 40%. So it is very likely that your D ratio would be higher, and that you have more inflammation than the tests indicate.

Your 1,25-D of 39.17pg/ml is 1.07 sigma high. Based on population studies, 85.77% of the population would be expected to have a lower number. While it is not above the Merck Physicians Guide maximum of 45pg/ml, it would easily have been, had you not been on Prednisilone. At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

People who have Sarcoidosis often have been diagnosed with asthma before of after their diagnosis of Sarcoidosis, and it is also not unusual for a Sarcoidosis patient to have had a history of sinusitis. Diabetes is also a Th1 disease, and many people with Sarcoidosis have also had a Diabetes diagnosis. Sarcoidosis is a systemic disease that can affect any and all organs in your body.

Avapro is in the same family of ARB’s as Benicar. However, Benicar is the ARB that you will need to use while on the Marshall Protocol.

How does Benicar work? Why is it superior to other ARBs?

You will want to look at this list of…
MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL

And, as I said previously, you will need to wean from the Prednisone. And this document may help you to do it more easily. WEANING FROM STEROIDS Getting the Benicar in place before you start weaning may help you by reducing the inflammation that will occur as you wean off of Prednisone. Remember that you should have your NoIR sunglasses before you begin Benicar.

The following forums are required reading before you begin the Marshall Protocol:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

You will need to stay indoors during the daytime if you want the treatment to work. Please see:

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Please let us know if you have any questions about moving forward with the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   02-28-06 19:37

Post moved to appropriate thread

Author: MARY KOLESAR (c-67-172-58-145.hsd1.pa.comcast.net)
Date: 02-28-06 18:28

I got my results of my vitamin d 1,25 dihydroxy today - the levels were at 32.7. what does this mean??

MARY KOLESAR
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   02-28-06 19:50

Mary,

Did your doctor also order the 25D test? We also need the results of that test to analyze your D metabolites. The information on ordering them is here.

D METABOLITES TESTS

If he did not order the 25D, you can still have them done, and we can then analyze them.

Please read the first post on this thread, and you will see a list of other information that we also request in order to help you understand what the results mean.

Thank you, Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   03-01-06 06:11

Not sure if this is the right place to post these particular results. I have just got back from the hospital and am so disheartened that my calcium levels, once again, seem high. They are 2.58 mmol (normal range 2.2 - 2.6). I had them done by my GP a couple of weeks ago and they were 2.38 mmol. My doctor at the hospital said that the difference is probably due to the fact that the tests were done at different hospitals and they realised that there was a problem across the board with this. He told me not to be disheartened as my PTH level was now at 22 whereas before it was unmeasurable. He said 2.55 mmol (ish) may be my normal calcium level. He has taken more bloods for calcium today and said depending on what they are they may consider giving me more bisphosphonates.

I have diligently been avoiding vitamin d and sunlight for about 3-4 weeks now and I really did think that the 2.38 result was because of this. I feel totally down in the dumps again now.

Also, my creatinine has gone up to 117 (range up to 120) and my GFR is 49 (apparently in someone my age should be about 90) I have nephrocalcinonis and my doc said that this is the reason why. I have also noticed my urine is especially frothy this last week or so - does anyone else have this symptom? Also, my hair is still falling out - it looks almost bald underneath at the sides now.

I did mention the Marshall Protocol but he dismissed it and I really do not think that I will get anywhere with him on that one. He says that sarcoid eventually burns itself out and that is what he expects to happen to me. I don't know what to do because I feel as though I need him and his expertise (he is a world renowned expert in calcium metabolism) especially as he says I am in danger of renal failure in the future. I have gone from feeling really positive to being totally tearful again.

I have had some more D metabolites tests done today too but I think those results take quite a while to come back as the 1,25 has to go to Glasgow (I think).

Just don't know where to turn at this moment in time now.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   03-01-06 07:31

Anna,

With all due respect, your doctor is exhibiting some very contradictory thinking. He states your sarcoidosis will "burn itself out" but he says you are "in danger of renal failure in the future". Your recent labwork evidences that your sarcoidosis is getting worse, not better.

IMO, if you want to avoid that renal failure, you will find a doctor who will help you with the Marshall Protocol. It won't be easy but it can be done. And it's certainly easier than dialysis and kidney tranplant or even worse.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Bonita S. Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date:   03-01-06 16:43

Anna,

My MP name is Barney. I am in Phase 3 of MP and doing quite well despite the fact that I have already lost a kidney (right one) to sarcoidosis, have uncontolled type 2 diabetes, am allergic/intolerant to all diabetes meds including insulin. Have had sarc for 40 yrs and lost many other body parts.
When I found Sarcinfo and MP, it was 2 am and I was so excited that I thought I would finally be able to live (I had first known symptoms at 21yrs old). (A secret....don't tell the moderators....they thought I could not do this cause I was so sick.... I proved them wrong (haha)). Actually I love all the moderators and Dr. M, they have helped me thru it all, so in return I help others as much as I can.

My advice........find a new doctor....he does not know what he is saying....sarc does not go away or burn out.....I am here to prove it....I am just lucky I fought to live thru this....it is even in my lungs.

Do yourself a real favor.....print out the papers for the Physicians available on this site and find a family doctor who will read them and do MP with you before this doctor you are seeing scares you to d e a t h.

If you need to communicate with a lady who has lots of kidney problems that are going away with MP........my address is [edited by moderator] or I am Barney....road to recovery on Phase 1 Alumni at Marshall Protocol.com and we can Private Message until you feel confortable doing MP.

Don't hesitate...the sooner you start....the sooner you will be W E L L.

Luv, Barney
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: MARY KOLESAR (---.hsd1.pa.comcast.net)
Date:   03-01-06 21:13

Lottie -

No he did not ordered the d25. he said the test he ran was enough and is normal range so he feels that it is not the sarcoid. he says i am looking to have an issue with this disease.

He can't explain the uncontrolled b/p and pulse rate- today is was 189/100 and pulse 105 this morning and then tonight it was 170/99 and pusle 101. the funny feeling in my legs making it hard to walk. the foggy head.
All stress per him.


Mary

MARY KOLESAR
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   03-02-06 00:40

Mary,

We can’t analyze them based on the one test. Even a “normal” 1,25D test can indicate that a person has a Th1 disease. And, although Quest did the test, it is possible that the specimen wasn’t handled properly at some point. If it wasn’t frozen shortly after being spun down. Since 1,25D degrades rapidly, your actual level could be higher.

If the 25D is low, it suggests a rapid conversion of this prehormone to the active metabolite 1,25-D.

And the D ratio, which also uses both test results also can indicate if a person has Th1 inflammation going on.

I know that I sent you the doctor’s list. I hope you will find a doctor that will run both of the tests, preferably, or do a therapeutic probe.

I am quite sure that the only stress related problems you are having at this time is the fact that you are sick, and your doctor isn’t open minded enough to help you.

Remember that people with a Th1 disease are unable to regulate the production of vitamin D. Don’t forget the list of HYPERVITAMINOSIS-D SYMPTOMS.

Elevated blood pressure, and tachycardia are not unusual with Th1 diseases either. I’ve had both.

Let us know if we can help you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   03-02-06 07:03

Hiya

Thanks Meg and Barney for your responses. I guess I am really scared about leaving this doctor and his 'expert' advice. He is so well known and respected and I have been told to trust him implicitly. He is also very kind but not at all open to any ideas I have (very meekly) dared to put to him.

My PTH level today has gone down from 22 on Friday to 10 today - which I guess means my blood calcium levels will be up but I don't know those results yet...will get them tomorrow. In some ways I just don't want to know because it just depresses me as I thought I was doing so well!!

I don't know whether I have sarcoid in my kidneys (nothing showed up on CT scan) only the nephrocalcinonis, which is quite pronounced, especially in my right kidney.

Would be great to correspond directly with you Barney to avoid clogging up this board unnecessarily. Didn't quite get the whole of your email address, perhaps a moderator could post it to me via email if that would be possible please?

Kindest regards

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-02-06 17:13

Anna,

We do not allow emails to be posted on the forum. This protects our members from internet tools that "mine" emails for spamming.

Barney has given her permission and I have emailed you her address. You may contact her for private discussion.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   03-03-06 03:03

Belinda,

Have got Barney's email address from you - thanks.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lisa68 (---.computan.on.ca)
Date:   03-18-06 07:17

Hi Belinda, Lottie, Meg,

I haven't posted in a long time. I've been working on getting a willing doctor and filling my prescriptions for the Benicar and Minocin - which I have in my hot little hand.

Last time I posted I gave you my 'd' results and you advised me to try to get them down before attempting the MP: D125 = 120 pmol/l, and the 25 hydroxy D = 90 nmol/l at that time (in Sept. 05)

I have been working on my diet a little better and staying out of the sun more and wearing the glasses. I have to be honest though and say I have not been covering our windows over, yet. My d results as of last week are: d125 = 102pmol/l and 25HD = 76 nmol/l

How do they convert to the figures that you use? Are the levels low enough now to start the MP? I am looking forward to starting the treatment and it is in fact my dr. who really wants me to get going on it.

Lisa
dx. mediastinal sarc May 2003, took pred. and MTX for about 1 year, mediastinal lymph nodes cleared up but I continued with 'constitutional symptoms' of headaches, chest pain, throat tightness, palpitations, very dry eyes (cant even open them in the am), achy joints. Then, ct chest aug. 05 showed numerous nodules throughout both lungs. My PFTs are normal though right now. I continue with 'constitutional symptoms - every day.

Lisa
dx. with mediastinal lymph sarc. May 2003
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   03-19-06 02:40

Lisa,

You apparently misunderstood. You don’t need to get your D levels down before you start the MP. You can start the MP at any time, as long as you have the NoIR sunglasses, and you follow the non-medical aspects of it as well.

In order to be successful, you do need to avoid sunlight and cover up completely whenever you HAVE to go out. You also need to cover the windows in your home, even if they are shaded. It’s not a matter to stay out of the sun “more”.

The 1,25D converts to 43 pg/ml and is still higher than you want it to be.

Your 1,25-D of 43 pg/ml is 1.47 sigma high. Based on population studies, 92.92% of the population would be expected to have a lower number. It is close to the Merck Physicians Guide maximum of 45pg/ml. At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

Your 25D works out to 30 ng/ml, and is high. Because your 25D is elevated the D ratio isn’t accurate. But your 1,25D is consistent with a Th1 inflammation

You do still need to get the 25D down to or below the therapeutic level of 12. That means avoiding vitamin D completely. You’ll need to check labels on any processed foods, and also avoid supplements with vitamin D in them. Your 25D is still quite elevated if you have been avoiding vitamin D for about six months.
If you were eating foods high in vitamin D or taking supplements with vitamin D in them prior to your first tests, it may take you a bit longer than some, but it generally drops by about 50% about every three months when you avoid vitamin D in foods.

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Here are some of the tips for avoiding sunlight.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

The following forums are required reading before you begin the Marshall Protocol:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

If you are taking any supplements or medications, please read these:

Should I stop taking any of my medications?

Why do I have to stop taking supplements?

I thought all OTC supplements were safe. Which ones should I be concerned about?

You should probably print out the PHASE ONE GUIDELINE so that you can easily refer to it.

And, please be sure to read this as well.

SAFETY WARNING

It would be helpful for you to register, start a progress thread, and let us know regularly how you are doing on our sister site, www.Marshall Protocol.com when you start the Benicar, at the Benicar only Forum. Please read the information in the first two posts about posting, and Benicar. That will help us to help you get through the MP with the fewest problems.

Let us know if you have any questions about starting the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lisa68 (---.computan.on.ca)
Date:   03-30-06 17:46

Thanks Lottie.
I am going to start taking my Benicar tonight. I am off work for a week (just how the schedule worked) and so I think this is a good time to start. I've been wearing my NOIRS for the past few days now. I will register on www.marshallprotocol.com now.

I must say, I am a bit nervous to start. I've had chest pressure throughout and occasional palpitations so I worried about getting into some sort of crisis. I'm sure I'm not the only one to be nervous at first though.
Thanks

Lisa

Lisa
dx. with mediastinal lymph sarc. May 2003
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   03-31-06 03:30

Lisa,

I think that everyone is a bit nervous when they start. You should do fine.

I'm glad that you're registering on MP.com so that we can help you get through the MP easily.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kirk (---.americas.hp.net)
Date:   04-05-06 17:11

A friend of mine had her son tested for D ratio because of his re-occurring
iritis. The test results came back as:

D25 was 32 Normal Range is 20-100

D125 was 46 Normal Range is 27-71

The 1.25 was frozen by the lab. The D raitio is 1.44.

Please advise.

MP Phase 3 -1/1/06 D 25 = 12, D 1-25 = 56 (6/20/05), Benicar (C15) 5x/day, No D in Foods, yes/NoIR. UV @ work. Dx: biopsy 99' Stage IV Sarcoid, Lungs, Lymph Nodes. lungs, kidneys, eyes, nervious system & cardiac
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-06-06 03:04

Kirk,

It’s considerate of you to post these results for your friend.

I could make a stab at them, but it would be more accurate if we had more history of this person. If possible, could you find out and post if the following?

Are there any other symptoms?

Is the person taking steroids? Using eye drops with steroids?

What other medications, if any, are being taken?

Is this person taking any supplements, vitamins, fish oil, etc.?

Has the person been avoiding foods with vitamin D? If so, for how long?

Thanks, Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kirk (---.americas.hp.net)
Date:   04-06-06 07:43

No other symptoms, besides mild chronic Iritis, James has always been the healthiest of kids, in every way, very active very healthy, never gets sick. Only thing is the chronic Iritis which started with eye trauma when a basketball hit his eye very hard trauma/injury.

James was on steroids orally for 3 weeks only about a year a go. He had been using the steroid Pred-Forte eye drops for the iritis until about two months a go. The Iritis is now gone but he has been on methotrezate for the last year started with 10 milligrams and went up to 20. He is now on the last two weeks of methotrezate down to 5 milligrams and then we are stopping it completely. His Iritis has always been mild, no granules, simply Iritis.

He is taking a multi vitamin with no vitamin D whatsoever, simply antioxidant with lots of vitamin C and the Folic acid which they have him take due to the methotrezate.

He has not avoided any vitamin D, on the contrary, drinks regular milk every day, I tried avoiding D about two months ago for one day and he would not do it, I even bought the milk but he did not like it so he just eats everything and anything.

Eye doctors told me at the beginning that it was possible sarcoid because of the elevated ACE only twice in the last year but his pediatricians did not agree, only the eye doctors because of the chronic Iritis and slightly elevated ACE.

MP Phase 3 -1/1/06 D 25 = 12, D 1-25 = 56 (6/20/05), Benicar (C15) 5x/day, No D in Foods, yes/NoIR. UV @ work. Dx: biopsy 99' Stage IV Sarcoid, Lungs, Lymph Nodes. lungs, kidneys, eyes, nervious system & cardiac
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-07-06 02:18

Kirk,

Thanks for the additional information. I'll write this as though I were reporting it to your friend's son.

Your 25D at 32 ng/ml is elevated, indicating that you are eating a lot of foods containing vitamin D. It may be coming from foods naturally high in vitamin D (egg yolks, fish, liver, fish oil) or food that has been fortified with it, such as milk or other dairy products.

Because the 25D is elevated, the D ratio is not accurate.

Your 1,25-D of 46 pg/ml is 1.79 sigma high. Based on population studies, 96.33% of the population would be expected to have a lower number. It is above the Merck Physicians Guide maximum of 45pg/ml. At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

Your elevated 1,25D does indicate that you have a Th1 disease. Sarcoidosis is one of the Th1 diseases, and the Marshall Protocol can help you to recover your health, and keep your sight.

If you read the information at our sister site MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS, you will find information on Methotrexate. It will not rid your body of the cause of your disease, as it is only a palliative treatment, and has adverse side effects.

Along with clinical signs or symptoms (such as iritis), the ACE test is a useful test in diagnosing Sarcoidosis when it is elevated. The ACE level. It is not always elevated, even with patients who have a biopsy proven diagnosis of Sarcoidosis. I have never had an elevated ACE level.

Sarcoidosis is a systemic disease that can affect any and all organs in your body. We now know that Sarcoidosis is caused by Cell Wall Deficient (CWD) bacteria, which have learned not only how to avoid the immune system, but to live within the very cells of the immune system that are supposed to kill them.

People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for "vitamin D")

Sarcoidosis would definitely be a suspected disease in this case. And, without proper treatment will not get better. The Marshall Protocol is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

Even the Prednisone that is present in eye drops find their way into your body, and will affect your immune system.

You should be avoiding vitamin D. The most obvious sources of vitamin D are eggs (the yolks), fortified dairy products, fish, fish oil, and liver. You should also read the packaging on products to be sure that there is no vitamin D added.

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Beginning to avoid sunlight now, is a necessary part of the MP.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

I hope that you will seriously consider following the Marshall Protocol. Your eyesight is at stake, as well as your general health. Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kirk (---.americas.hp.net)
Date:   04-07-06 07:56


Why does the lab state that 46 is normal?
And Merick states 45 is the high end of normal?
& what is considered normal for D25?

MP Phase 3 -1/1/06 D 25 = 12, D 1-25 = 56 (6/20/05), Benicar (C15) 5x/day, No D in Foods, yes/NoIR. UV @ work. Dx: biopsy 99' Stage IV Sarcoid, Lungs, Lymph Nodes. lungs, kidneys, eyes, nervious system & cardiac
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kas (---.cpe.net.cable.roger)
Date:   04-19-06 10:46

D levels for Kas - March 2006


1,25 Hydroxy Vitamin D .72 pmol/L ( previously 75. in June 2005)

25 Hydroxy D <18nmol/L ( it was so low, it could not be measured, apparently!)
( previously 32. in June 2005)


Taking 100 mg of mino eod at time of test. No Benicar yet. Vitamin D foods being fastidiuosly avoided. Light/Sun avoidance as much as possible given work situation and driving) Wear Noirs most of the time, cover up outdoors with hat, gloves and glasses, but could be more astute.

Dx sarc 2003 by splenectomy. Also in lungs, chest lymph nodes, raised liver enzymes ( intermittent), leg muscle pain and sometime ankle swelling/burning. Well with high energy levels and normal PFT's Able to exercise and work at this point.

Pre MP.

 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kas (---.cpe.net.cable.roger)
Date:   04-19-06 20:08

Sample was frozen, taken on March 31/06. No pred. No d supplements or food containing D for the past three years. Lactose intolerant, so supplement with a calcium/magnesium supplement. Ca levels in the middle of normal range.

Doctor worried that 25D levels may now be way too low, as they were so low they could not be measured by the test. She wants to know if I should perhaps be taking some D foods/supplements.

Having next lung function test and CT on May 17.

Dx sarc 2003 by splenectomy. Also in lungs, chest lymph nodes, raised liver enzymes ( intermittent), leg muscle pain and sometime ankle swelling/burning. Well with high energy levels and normal PFT's Able to exercise and work at this point.

Pre MP.

 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-20-06 01:47

Kas,

Your 1,25D is quite good at 30 pg/ml. It is 0.11 sigma high. Based on population studies, 54.38% of the population would be expected to have a lower number.

Your 25D is < 7.2 ng/ml. You do not want eat anything with vitamin D or take any vitamin D supplements.

Can my Vitamin 25-D go too low?

My 25-D is low and/or my 1,25-D is high. Should I be concerned about osteoporosis?

A Review - Vitamin D and Calcium in Sarcoidosis (7-5-03)

Don’t I need to take a calcium supplement?

Why do I have to stop taking supplements?

I thought all OTC supplements were safe. Which ones should I be concerned about?

Any idea when you may be trying the Benicar again?

You’ll find the answers to many questions you may have along the way in the following forums on MP.com: They are required reading before anyone begins the Marshall Protocol, and refer to them when you have questions.

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kas (---.cpe.net.cable.roger)
Date:   04-20-06 03:33

Thanks, Lottie.

I will continue avoiding all ingested and supplemented D. I have read the tutorials and will inform doc that no harm will be caused by such low ( no !) levels. She will be relieved!

Good to hear that my 1,25 D has also improved, even although I am not perfect with sun/light avoidance. I do my best.

I will continue with the mino until I can try the benicar again, which I hope to do in the next two months when I am home from work.

I am not encouraging anyone to go the mino route only, and realise its limitations fully, but I have really improved a lot using it - leg pain - only occasional, hand night numbness - can't recall last time I had it. Cough greatly reduced. Faint lung crackles heard intermittently still, but no adenopathy seen on X- ray, just right middle lobe slight density ( they put that down to pneumonia, gave me and pain went away on breathing). Will be interesting to see what the CT reveals. Energy levels still good enough to work etc, but I have reduced my load of late to have more time at home and not driving in the sun.

At present, waiting for Z to clear tissue, and will resume 100 mg mino eod until just before starting B,if that is OK.

Dx sarc 2003 by splenectomy. Also in lungs, chest lymph nodes, raised liver enzymes ( intermittent), leg muscle pain and sometime ankle swelling/burning. Well with high energy levels and normal PFT's Able to exercise and work at this point.

Pre MP.

 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-20-06 04:09

Kas,

Just to be sure we're talking the same language.

You're going to resume the Mino after your present antibiotic clears your system.

And, when you are in a position to start the Benicar, you do remember that you will want to stop the mino, and restart it when you have stabilized on the Benicar, or at least drop it to 25mg every other day.

You may need to adjust the mino during the time when you start the mino, but if you do continue the mino, you will want to start it at 25mg so you reduce your chances of hitting a "wall of herx" when/if the Benicar increases the mino's effects.

You will want to post regularly when you start so we can help you "catch" any problems that may sneak up.

Oh, if you look at my signature line, my 25D has been less than 5 "officially" for almost a year now, and probably longer. No problems!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Kas (---.cpe.net.cable.roger)
Date:   04-20-06 04:32

I will do as you say, Lottie, and thank you for all your encouragement.

I will certainly be posting once I get started on the Benicar, as I am sure I will need help to get me through the early stages. I am really quite fearful about starting, as I had a reallybad experience with benicar two years back, as you know. Perhaps this time, I am more knowledgeable and will be more realistic in my expectations and try and avoid sun/light better. I think I will also try the lower dosing ( 20mg four times a day) and see how I go on that.


Yes, I will resume taking mino only in about another week. I know to stop it/ greatly reduce it when starting the mino. Will deal with that when I get there.

Your help is greatly appreciated.

Dx sarc 2003 by splenectomy. Also in lungs, chest lymph nodes, raised liver enzymes ( intermittent), leg muscle pain and sometime ankle swelling/burning. Well with high energy levels and normal PFT's Able to exercise and work at this point.

Pre MP.

 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Sharon Houck (---.il-chicago0.sa.earthlink.net)
Date:   04-20-06 20:03

I just got my d tests done by quest lab again - it has been abt 4 mos since we checked them. D 1,25 14 range (6-62) and D25 5 ng/ml range (20-100) the D25 tagged on the test as low I know the ranges dont count for much. My anemia has improved slightly so that it did not flag as low this time on the cbc tests. Not taking anything for it.

I am in phase 2 getting ready to go into Phase 3 in May if all continues to go well. Not taking any supplements, still using noirs. Past three wks no herx at all. Will get more sun driving to work now that the time changed and it stays light longer- continuing to wear gloves, etc.

Doc said he wants me to go on tindamax at one a day for a quick run before he puts me all the way into phase 3 antibiotics. Do you have any thoughts on doing that - he said its not part of your protocol, but it has helped some of his lyme patients. He said since herx not bothering me a lot he would then put me into Phase 3 to see how I do, and we can always go back to phase 2 if I have any major issues.

He also wants me to have a cd-57 test .

sarc chest lymph glands 1/10/05, started benicar 40 mg q8h 4/20/05 mino 100 mg qod-using noirs. D tests 5/10 - D,25 7 ng/ml, d 1,25- 49. started Phase 2 8/20. tests 11/7: d25,9 D1,25 - 27; tests 3/22/06 D25,5 D1,25 at 14 nt much herx
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-20-06 21:51

Kas,

I certainly do understand your concerns about restarting the Benicar. I do think that you’ll have an easier time since you are starting with a lower 1,25D level. Being strict with the sun will also help.

You may find that the lower dose isn’t adequate, and may actually cause you more problems than the higher dosage. It is still recommended that you start with the recommended dosage of Benicar 40mg every six hours. Many of the people who have tried dropping their dosage to 20mg every six hours have had to return to the recommended dosage.

It seems that while it may be sufficient to help the immune system with killing bugs, it doesn’t provide enough of an inflammatory blockade for most people, and there can be more problems with herxing at the lower dosages.

You may want to review some of the Benicar issues. There may be new information since you last checked.

When and why should I vary my Benicar schedule?

Why shouldn’t we ramp up the dose of Benicar?

Do I need to take extra salt because of Benicar?

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-21-06 02:27

Sharon,

Many of the doctors who treat lyme patients are used to seeing the palliative effects that some medications can have. The MP medications will help you get well, and not just give you symptom relief. There is information about treating co-infections at our sister site www.Marshall Protocol.com

Should I treat my co-infection before I start the MP?

It is preferred that you not take any medications or supplements that are unnecessary while you are on the MP, as they can upset the body’s natural balance, and in some cases stress the system even more.

I’m not sure why he wants you to have a cd-57 test. It won’t change how you follow the MP.

I will be sending you a questionnaire that we send out so that we can be sure that you are following the MP correctly and help you make sure that you are ready to advance to the next level. After you have completed it, we can then also give you admittance to Phases 2 and 3 Forum – Progress thread.

It will help us to help you if you haven’t already done so, to then register on www.Marshall Protocol.com, and periodically post your progress at the Phase 2 and 3 Forum. That way if you should have any problems it is be easier for us to see how you have done during your time on the MP, and then easier for the moderators to give you the best advice for any current issue that you may have.

Please check your inbox for the questionnaire.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   04-25-06 09:32

HI

I got the latest results of my 1,25 D levels the other day and they are now 83 pmol/l and I was told that it is now 'normal' - range is up to 170 pmol/l. I am still awaiting the results from the 25D because apparently there is a problem getting the assay kits from the States at the moment so they are waiting for them to come from Belgium. My last 25D in December 2005 was 105 (sorry not sure of units again) but was told it was extremely high still.

I have also started reducing my Prednisolone to 5mg day which I see as positive although I am hoping I don't start feeling worse.

Still avoiding sun and D. How long will it take for my 25D levels to become normal again? If it was 105 in December and my last bloods were taken at the beginning of March and I had been avoiding dietry D and sun since beg Feb, what could I realistically expect them to be now? Or is that a 'how long is a piece of string?' question.

Regards

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   04-25-06 22:10

Anna

It is good that you have gotten the 1,25D level down. You do need to keep in mind that Prednisilone does help lower the 1,25D, and can lower it by 25 to 40%. As you drop the Prednisilone, your 1,25D level may rise.

I have no idea of where your 25D would be at this point. The level in December was extremely high. Normally, it takes about two to three months for the level to decrease by 50%. However, we have found that it can take much longer in some people. It seems especially true for those who have eaten a lot of high vitamin D foods, and/or took supplements with it, that it does seem to take longer to decrease the 25D levels.

This is information about D metabolite levels for people who are on the MP.
How often should I test D levels? What are the target numbers?

You do run the risk of organ damage from inflammation as you drop off of the Prednisilone without taking Benicar. Besides helping the immune system to find and kill the Cell Wall Deficient (CWD) bacteria, it helps protect the body’s organs. You do need to continue to search for a doctor who will work with you with the MP.

Where can I learn about Benicar used for applications beyond anti-hypertension?

BENICAR SAFETY STUDIES

How does Benicar work? Why is it superior to other ARBs?

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   05-17-06 02:38

Hello all

I have just got back from the hospital and found that my 25D has gone up even higher from October to being 118 mmol/l!! I am avoiding D foods and sunlight - when I HAVE to go out I wear SPF 60 - where am I going wrong??!!

Anna

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-06 08:47

Anna,

25-D is an indicator of ingested sources of vitamin D. If your 25-D has gone up, then you need to investigate everything you take in by mouth to find the hidden D source. This happens quite often, and it will simply take diligence and detective work to find the D so you can eliminate it.

You may want to consult these items:
FOOD TIPS
FOODS TO AVOID

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   05-17-06 10:05

Hi Belinda

I will certainly re-visit those pages and re-read them thoroughly but I thought I was being sooo careful about things with D in them. The only thing I can think of off the top of my head is that I do use a lot of extra virgin olive oil in cooking, and I do remember reading something on one of the sites about the possibility that this had D in it but it was unconfirmed as far as I know? But anyway, I will definitely look at my diet again.

Also, I thought that 25D was an indicator of the total amount of inactive Vit D in the body from both sunlight and food sources - is this not correct? I know that Vit D is stored in the liver, would sarcoid inflammation in the liver actually stop these levels falling? Sorry if that sounds like a really stupid question (I'm not very scientific at these things) - it's just that my LFT's, in particular my GGT and ALT are still rising and I thought that this may be a reason? Or maybe the Ramipril that I have started taking 2 months ago is causing my LFT's to rise?

Best wishes

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-06 11:25

Anna,

The blood test for 25-D measures the level of 25-D circulating in the blood and obviously the first source is nutritional. I don't know of any way to measure the vitamin D stored in fat cells.

Keep in mind that 1,25-D fuels granuloma production and plenty of 25-D provides the building blocks for 1,25-D.

Sarcoidosis and elevated 1,25-D can affect liver function tests. Asymptomatic liver involvement is common in sarcoidosis. An article available on Medscape from "Gastroenterology" says:
"The prevalence of hepatic granulomas in sarcoidosis is 65%. In a study of 100 patients with hepatic sarcoidosis, the majority of patients were asymptomatic and had normal abdominal examinations." Have you discussed with your physician how sarcoidosis may affect your liver function?

Have you considered talking to your physicians about the MP as a treatment option? They might be interested in the brochure and registration information about our conference June 17-18 in Los Angeles.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   05-18-06 00:18

Thanks Belinda

My physician hasn't really said anything about how the sarcoid can affect my liver, only that it is a relatively common occurance. Unfortunately, none of the doctors will consider the MP as a form of treatment. At the moment I guess all I can do is keep avoiding D and light. I have now got my NoIR's so maybe that will help too.

Just another quick question if you don't mind, I was getting a lot of muscle trembling and twitching and found on the net that this can be a symptom of magnesium deficiency (of course amongst other things, sarc included!). I asked my GP to test my serum magnesium level and is was indeed low at 0.64 (range 0.7 - 1.0.5 mmol). He said at this level it would not cause me any symptoms so never any treatment, however what I have read on-line suggests that it would. It states on the MP not to take any vitamin supplements but I am quite tempted to take a magnesium supplement just to see if it helps me at all - what do you think? Also, as I have impaired renal function (nephrocalcinosis) would this be a problem with excretion etc.? I am just so confused about the whole thing as it seems that my whole body is out of sync completely.

Sorry to ramble on but any advice would be very much appreciated.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   05-18-06 03:12

Anna,

Remember that Sarcoidosis is a systemic disease that can affect any and all organs in your body. It causes inflammation in your body. Your liver function tests can be an indication that there is inflammation going on in your liver. When damage to an organ occurs, it doesn’t function properly, and that will show up in the tests.

While magnesium deficiency can cause the symptoms you describe, you should go back over the information about HYPERVITAMINOSIS-D SYMPTOMS (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”) Muscle twitching and trembling is common for people with Sarcoidosis. There are many neurological symptoms of Sarcoidosis.

Did they also redo your 1,25D? it would be interesting to know what that is with your 25D so very high. Consider 25D as a fuel source for the Cell Wall Deficient (CWD) bacteria to use to turn into 1,25D. You may find that you will start to feel better by avoiding vitamin D in foods, and supplements. The most obvious sources of vitamin D are eggs, fortified dairy products, fish, fish oil, and liver. I understand that in England the margarine is fortified. You should also read the packaging on products to be sure that there is no vitamin D added. The links that Belinda gave you should help.

There is information here on magnesium.

Is it okay to take magnesium?

Sunblocks, even SPF 60, do not block the rays that cause people with Th1 disease the problem. It only takes 15 minutes a day of exposure of the arms for a well person to obtain the amount of sun needed to produce enough of the 1,25D. Since the CWD bacteria produce it on their own, the combination causes you to have too much 1,25D.

When you have to go out, you should apply 2% Ketoconazole Cream to exposed areas of skin.

How does ketoconazole cream work?

Instead of trying to figure out something that you can take to stop things like twitching, you need to concentrate on understanding the Marshall Protocol, so that you can explain it to a doctor, and also concentrate on finding a doctor who will treat you with the MP. It sounds as though you are not getting better, and perhaps much worse. Ultimately, your life is at stake.

Have you posted on www.MarshallProtocol.com? Many people from the UK post over there, and perhaps someone can help you locate a doctor who will help you. That is where Julia posts most often. And, Belinda and I also moderate that site.

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   05-18-06 07:10

Hi Lottie

I had the 1,25D done at the same time as the 25D and the result of that was 83 pmol/l, which I have been told is normal. I know that Prednisolone can affect those results and at the time I was on 10mg per day, now down to 5 mg a day.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   05-18-06 22:39

Anna,

Your 1,25-D of 35 pg/ml is 0.63 sigma high. Based on population studies, 73.57% of the population would be expected to have a lower number. Remember that Prednisone reduces the 1,25D by 25 to 40%. So, your 1,25D would have been higher without the Prednisone. And, remember that the Cell Wall Deficient (CWD) bacteria that cause your disease, use 25D to produce 1,25D.

Don’t forget that at levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

Even though your level was around 35, it can very easily go up when and if you are exposed to the sun. It is also very unstable after the blood is drawn, and degrades rapidly if the sample isn’t handled properly after it is drawn until it is tested. You aren’t very far away from the 42 pg/ml, and we aren’t sure if it is accurate. If it isn’t accurate, the reading is lower than your actual results should be.

Please concentrate on learning as much as you can about the MP, so that you can discuss it with doctors.

Again, I also encourage you to post on www.MarshallProtocol.com. Someone there may be able to help you find a doctor who will help you get well on the MP.

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Anna (---.server.ntli.net)
Date:   05-19-06 04:30

Hi Lottie

Yes, I will definitely go on the Marshall Protocol website. I have read stuff on it before and it is definitely an extremely informative site, but I guess I thought that you would have to actually be ON the MP to post on it.

My 1,25D has actually come down substantially since I was first tested in October 2005 when it was 309 pmol/l. I was 27 weeks pregnant and this time though and I am not sure if that high figure was because I was pregnant as I know that the placenta produces 1,25D, hence my question previously about what the D-ratio would be in a pregnant woman without sarcoid. I had very severe hypercalcaemia at this time at 3.66 mmol/l which is why I was given the high dose IV steroids, which still didn't reduce my calcium into the normal range! My calcium level is now normal at 2.35 mmol/l.

I have also read that persons who have nephrocalcinosis due to sarcoid-related hypercalcaemia usually have significant lung involvement which I do not have as my chest x-rays, for the moment, are totally clear. I don't suppose you know anything about this please?

I have today obtained the Ketoconozole 2% cream from my GP. He said that he had never heard of it being used to block 1,25D production in the skin (!) but it couldn't do me any harm so was quite happy to prescribe 2 tubes for me and more if and when I need it.

It would be my greatest wish to be on the MP and I hope that by posting on the MP site, someone may be able to help.

With best wishes

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-20-06 09:10

Anna,

Our website at www.marshallprotocol.com is for medical professionals as well as lay members who are either learning about or using the Marshall Protocol.

It's difficult to generalize about typical arrays of organ involvement in sarcoidosis because it is a systemic disease. A sarcoidosis patient can have organ damage (or failure) in the kidneys or eyes, for instance, without obvious lung damage.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   05-21-06 02:14

Anna,

You will probably want to start a thread in the **General Discussion of the Marshall Protocol** thread over on MP.com.

It would be helpful if you would start by making a post there with your history of symptoms, any diagnosis that you have been given, your test results, and any other information that you can think of. Such as if you are avoiding vitamin D, and sunlight, etc. It will act as a form of introduction to those on the site, and the other moderators.

You will also need to set up the required signature line. The one on SarcInfo doesn’t “follow you” over there.

Let us know if you have any problems registering or posting on www.MarshallProtocol.com, and we can help you get set up posting over there, and getting in touch with others in the UK.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Chris Burham (---.sip.asm.bellsouth.net)
Date:   06-03-06 12:36

Hello,

I had my blood drawn on 5/23/06. I started limiting my consumption of vitamin D on 5/18/06. On 5/25/06 I started taking prednisone. The sample was frozen after being drawn and was handled properly as this clinic is very familiar with this test.

D25=30
D1,25=40
Ratio=1.3

Also, while I was in the hospital in March my ACE was 42. I was taking Lotrel for high blood pressure during this time. I am currently taking Diovan HCT

In March I had ICD surgery because I was in complete heart block. Previous to Feb '06 I was healthy having never had a stitch, broken bone, or been in the hospital. The only health issue at that time I was concerned about was borderline cholesterol.

Thanks for your help!

DX Sarcoid May 2005 Lung Bronchoscopy, Heart Started Pred 5/25/06 (5/23/06 1,25D = 40 25D = 30 ) No Dietary D, Diovan HCT
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-03-06 15:16

Chris,

Your 25D is borderline high, and indicates that you have been eating foods with vitamin D, and/or taking supplements containing vitamin D. You will want to diligently avoid all sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

The 25D being as high as it is makes the D ratio inaccurate.

Your 1,25-D of 40 pg/ml is 1.16 sigma high. Based on population studies, 87.70% of the population would be expected to have a lower number. It is not above the Merck Physicians Guide maximum of 45pg/ml, but the 1,25D level can fluctuate rapidly, and be affected by how the sample is handled, as it decays rapidly if not handled properly. It is close to 42 pg/ml, and at levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

With your apparent cardiac involvement, I would actually expect your 1,25D to be higher that the test has shown. Diovan is an ARB, in the same family as Benicar, and may also have reduced the level of your 1,25D. However, 40 pg/ml is indicative of th1 inflammation, and that the MP will help you to get well.

Did you ask the laboratory if they froze the sample after it was spun down prior to the test being run? Handling “properly” does not mean that a lab’s policy is to freeze the sample for the 1,25D test. And, often, the technicians are used to handling the 25D and don’t realize that the 1,25D needs to be frozen. I remind them EVERY time I have a 1,25D test done, as the first time I had it done, I overheard part of a phone conversation that the technician had with the lab manager, who told the tech that it didn’t need to be frozen. The tech called a different section of the lab who looked it up, and told the tech that it did need to be frozen after being spun down until tested.

The ACE test is not significant in the diagnosis of Sarcoidosis unless it is high. Many people, such as myself, have never had an elevated ACE even with biopsy proven Sarcoidosis.

There is information at our sister site MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

What do my lab tests mean?

Elevated cholesterol also indicates that there is inflammation going on.

You don’t want to take any medications with HCT in them, as you may have unidentified kidney involvement with the th1 inflammation, and the HCT puts additional stress on the kidneys.

MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL

Even though Diovan is an ARB, Benicar is the one you need to be on while on the MP.

How does Benicar work? Why is it superior to other ARBs?

Where can I learn about Benicar used for applications beyond anti-hypertension?

Prednisone may reduce the inflammation initially. However, it will allow the Cell Wall Deficient (CWD) bacteria that causes th1 inflammation to flourish with NOTHING to stop them. Prednisone is contraindicated in a person with a bacterial infection as it stops the immune system from functioning.

An echocardiogram done at the time of my Sarcoidosis diagnosis showed that there was inflammation going on in my heart. After I was on Prednisone for about three years an echocardiogram showed that the inflammation was gone. Another year and a half later, while still on Prednisone, I started to have my cardiac symptoms again – PVC’s, shortness of breath, tachycardia, palpitations. An echocardiogram done at that time showed that the inflammation was back, and was worse than when I was diagnosed. In addition, my cardiac output was then reduced. That doesn’t include the other problems that Prednisone can cause. I can assure you that you do not want to be on Prednisone, and I urge you to find a doctor who will treat you with the MP!

WEANING FROM STEROIDS

Since about the time that I was about midway through the modified Phase Two of the MP, I now have fewer cardiac symptoms than I have had for years! And, I have had cardiac symptoms since 1969. I was diagnosed with Mitral Valve Prolapse (MVP) around 1978. I have since learned that MVP can be caused by inflammation.

Beginning to avoid sunlight now, which is also part of the MP, may also help you start to feel better sooner.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Be sure that you have your NoIR sunglasses before you start Benicar. PROTECTING YOUR EYES Where to purchase NoIR and Bolle 100 sunglasses.

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Duane Krzysik (165.129.13.---)
Date:   06-15-06 10:58

Hi,

Finally after a month of trying to get my Vitamin D metabolites done I have the results.

1,25 D = 38.2
25D = 24
ratio = 1.59

I have been avoiding food fortified with vitamin D.

Starting MP soon.

Thanks

Duane G. Krzysik DX Pulmonary Sarcoid (5/06), Paget's Disease (6/06), Polythemia (6/06), 10 mg predisone, (June 06 - 1,25 38.2 and 25D 24; ACE 48)
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Beverly Williams (---.proxy.aol.com)
Date:   06-20-06 04:50

Hi All,

I finally got my test results. I hope I am posting what you need to consider what is going on for me. I am not on the MP. I have been staying away from Vit D foods and sun. I do not take supplemental Vit D. Please let me know if you need additional lab results. They did a huge range of tests. The Vit D tests were done at the Mayo Clinic, Rochester, MN. I asked for that the test be frozen, don't know if it was. Date collected 5/23/06.

Thanks,
Beverly

1,25 32 pg/ml 22-67

25-Hydroxy 22 Interpretation: 10-24 (mild to moderate deficiency)
optimum levels in the normal population 25-80

ACE serum 27 U/L 7-46

Don't know if you need these, but they were flagged.
AST 52 U/L 14-38
ALT 87 U/L 15-48
ALT 60 U/L 15-48
Creatine Kinase 34 U/L 45-145
WBC 12.3 x10 9th/L 4.5-11.0
Absolute Neuts 9.5 x10 9th/L 2.0-7.5
Triglycerides 197 MG/DL 1-149
Creatinine/FP 0.6 Mg/DL 0.7-1.1

The above looks like some foreign math problem, hopefully, it will mean something to you. Thanks for you help.

Beverly

02/2004; Skin Biopsy; fatigue, all-over joint pain especially in sacriol area; researching MP; using NoIRs: starting Benicar 7/21/6; eliminating vit D from diet/sun
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-21-06 22:07

Duane,

Please forgive me for not getting back to you sooner.

I do need more information to help you assess the D metabolites properly.

Please let us know as much as you can of the following:

The date the blood was drawn.
The date you started Benicar, if you have started it.
What lab did the tests.
If the 1,25-D sample was frozen for shipment.
If you were taking Vitamin D supplements, including fish oil.

Thanks!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-21-06 23:00

Beverly,

You didn’t indicate how long you have been avoiding vitamin D. However, your 25D at 22 ng/ml is somewhat on the low side, which could indicate a rapid conversion of this pre-hormone to the active metabolite 1,25-D. You will want to diligently avoid all sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Your 1,25D is lower than would be expected for someone with your symptoms. This could be in part because of your use of Cozaar, which is an ARB in the same family of drugs as Benicar. It is also possible that the blood sample wasn’t frozen after being drawn and spun down until the actual test was done.
32

Your 1,25-D of 32 pg/ml is 0.32 sigma high. Based on population studies, 62.55% of the population would be expected to have a lower number.

The Merck Physicians Guide maximum of 45pg/ml. If it is actually higher, at levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

The ACE test is only helpful in the diagnosis of Sarcoidosis when it is elevated. It can be normal or low in someone with biopsy proven Sarcoidosis. I have biopsy proven Sarcoidosis, and have never had an elevated ACE level, or an abnormal chest x-ray.

This may help you with your other tests… What do my lab tests mean?

You may want to consider a therapeutic probe of the MP.
What is a therapeutic probe? which is at our sister site www.Marshall Protocol.com.

You should go over this list of
MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL

And, perhaps should also read these.

Why do I have to stop taking supplements?

I thought all OTC supplements were safe. Which ones should I be concerned about?

You will need to take Benicar not Cozaar while on the MP.

From the Progress Reports - Benicar only Forum progress forum BENICAR:
To Read Before Beginning Benicar

What is a therapeutic probe?

How does Benicar work? Why is it superior to other ARBs?

Benicar is not available in my country. I cannot afford Benicar. Is there an acceptable substitute?

Where can I learn about Benicar used for applications beyond anti-hypertension?

Let us know if you have any questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Duane Krzysik (165.129.13.---)
Date:   06-22-06 06:11

Belinda,

The date the blood was drawn was 7/8. The sample was not shipped, it was drawn and analyzed at University Hospitals of Cleveland.
I am weening from prednisone and starting MP in July.

Not taking any Vitamin D suppluments and avoid foods with Vitamin D.

Thank You,
Duane

Duane G. Krzysik DX Pulmonary Sarcoid (5/06), Paget's Disease (6/06), Polythemia (6/06), 10 mg predisone, (June 06 - 1,25 38.2 and 25D 24; ACE 48)
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Debbie Bergey (---.phlapafg.dynamic.covad.net)
Date:   06-22-06 19:28

Hi to everyone,

I just received my test results today and here they are:

Blood drawn on 5/17/06 from Quest Diagnostics; specimens frozen. No Benicar taken, no vitamind D supplements, no steroids, no sun. Glasses on at all bright light sun times. I am a vegetarian - no dairy at all.

Ace 34 Ref. range 9-67 U/L

Vitamin D, 25 Hydroxy- 8 Ref. range 20-100 ng/mL
Vitamin D, 25 Hydroxy - 10
This test shows to be taken twice on two separate reports! ????

Vitamin D 1,25 Dihydroxy - 39 Ref. range 20-100 ng/mL

ANA panel done <1.00 - In range
Sjogren's Antibodies done <1.)) - In range

DNA (DS) Antibodies <30 IU/ML - negative Range <30 = negative

2004 had accute bronchitis then pneumonia. Upon chest x-ray they found enlarged lymph gland. After CAT scan w/contrast, which I am highly allergic to, (found out the hard way), small nodules in all lobe areas with medastinal adenopathy since 2004. I will e-mail the current CT reading from 5/23/06. Maybe you can decifer. My pulmonologist has only done a broncoscopy and now wants to do a mediastinoscopy. The surgeon he had me see in 2005 said this looked like Sarc because he had 4 other patients with the same CT scan. He suggested I forgo the Mediastinoscopy.

I just had a reaction this past weekend to a soap in a restaurant. My throat burnt all the way down into my chest. By the time I got back to my handbag to retrieve the Albuterol inhaler, my throat was closing up. The inhaler seemed to help the reaction. But my pulmonologist just ordered me an EpiPen for future emergencies. The soap had an almond scent and I reacted a few weeks ago to shampoo with almond oil in it - same throat closing and my head and hair felt on fire. A month before that I ate some nuts in a dish NOT Almonds, don't like them, and reacted with difficult breathing.

I thought that the epinephrine was not good for people with Sarc and I asked the doc about this but he said my problem was an asthma problem not Sarc. They're both in my body and both seem to be a problem? Help!

Up til now, I have been feeling really well over the past nine months by using the avoidance technique. No breathing difficulty, no eye pain, muscle, joint pain. Virtually, no symptoms. Except this almond incident.

Thanks for your input on resolving some of this.

Debbie
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-22-06 23:13

Duane,

Your 25D at 24 ng/ml is in the normal range, and about normal for someone who has only recently begun to avoid foods. You will want to diligently avoid all sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Your 1,25D is lower than we would expect for someone with your diagnosis and symptoms. Prednisone can account for it being 25-40% lower than you would have without the Prednisone. It may also be that the lab didn’t handle it correctly prior to the test being actually run. However, it is high enough to indicate that you have Th1 inflammation.

Your 1,25-D of 38.2 pg/ml is 0.95 sigma high. Based on population studies, 82.894% of the population would be expected to have a lower number. It is above the Merck Physicians Guide maximum of 45pg/ml. At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

Your D ratio is in the normal range, but would be higher if you weren’t still on Prednisone.

With your diagnosis, you are definitely a candidate for the MP, and it will help you get well.

Beginning to avoid sunlight now, which is also part of the MP, may also help you start to feel better sooner.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Be sure that you have your NoIR sunglasses before you start Benicar. PROTECTING YOUR EYES Where to purchase NoIR and Bolle 100 sunglasses.

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-23-06 00:54

Debbie Bergey,

Could you give me more information on the 25D results?

Do the results say that they were they both drawn on the same day? Are they listed on the same sheet?

Thanks, Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Debbie Bergey (---.phlapafg.dynamic.covad.net)
Date:   06-23-06 12:52

Lottie,

The blood was drawn on the same day but the results were listed on two different papers. The 25D test administered was listed the same for both.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   06-23-06 22:01

Debbie,

It’s possible that the technician who ran the 1,25D didn’t realize that the 25D test had already been run, and redid the test with the same sample he had for the 1,25D test. I’m inclined to use an average of the two since they’re so close. So, I’ll use 9 ng/ml for the 25D

Your 25-D of 9 ng/ml suggests a rapid conversion of this pre-hormone to the active metabolite 1,25-D.

Your D ratio is elevated at 4.33, and clearly indicates that you have th1 inflammation going on, and that the Marshall Protocol (MP) will help you to get well.

Your 1,25-D of 39 pg/ml is 1.05 sigma high. Based on population studies, 85.31% of the population would be expected to have a lower number.

Although it is close to, it is not above the Merck Physicians Guide maximum of 45pg/ml. It fluctuates quite a lot, and could very well be higher than 39 at times.

At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

You may have many symptoms of Sarcoidosis that you don’t realize are related to your disease. People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

The following forums are required reading before you begin the Marshall Protocol:

ESSENTIAL INFO ABOUT THE MP

Marshall Protocol FAQs

This information at our sister site www.Marshall Protocol.com may help you >>> SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

You will want to diligently avoid all sources of Vitamin D to keep it down to a therapeutic level of 12ng/ml or less. Ingesting vitamin D is like throwing fuel on a fire. I just want you to be sure to know that you could be getting vitamin D from several sources, even as a vegetarian. Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Beginning to avoid sunlight now, which is also part of the MP, may also help you start to feel better sooner.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   01-12-07 02:54

Post moved to appropriate thread

1,25-D, PTH
Author: chieko alford (c-68-35-177-86.hsd1.nm.comcast.net)
Date: 01-11-07 09:23

Having symptoms of bone pain, malaise, fatigue, tinnitus, sicca syndrome, and a host more. The other day I spent some time in the sun ans it seemed my symptoms worsened.
R/O MS, still iffy on Sjogren's, SLE, RA.
My 1,25-D is 127 pg/ml (ref. range 15-60).
PTH 70.
Ca 9.5
I am only 49 y/o and have severe osteoporosis in my femoral necks bilaterally. Fx of wrist 2005.

Seeing an endocrinologist. Waiting for results of 24 hr urine.

Any comments?

Thanks!

Forgot to add...I am not post-menopausal. Have been active all my life, Currently, 5'7", 118 lbs. Lipids are good, sugar normal. Parathyroid scan was negative.
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   01-12-07 03:42

Chieko,

Welcome to SarcInfo.

Your 1,25-D is extremely high at 127 pg/ml. It is 10.32 sigma high. Based on population studies, 100% of the population would be expected to have a lower number.

It is well above the Merck Physicians Guide maximum of 45pg/ml. At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

Levels above 70pg/ml, suggest major organ involvement, such as heart, liver or lungs, and we caution folks to be alert for cardiorespiratory Herxheimer reactions on the MP. Please see:
What is a cardiac Herx? When should I be concerned?

Your elevated 1,25D is clear indication of Th1 inflammation, and that the Marshall Protocol (MP) will help you to get well. You don’t need a definitive diagnosis as to which Th1 disease that you have to be treated with the MP.

You may have many symptoms of Th1 inflammation that you don’t realize are related to your disease. People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

There is a list of the Th1 diseases that are presently being treated with the MP here >> Is the MP an Applicable Treatment for my Disease?

The Marshall Protocol -- simple explanations

Did your doctor order the 25D test as well? You will want to be sure that it is below the therapeutic level of 12 ng/ml. An elevated 25D can suppress the immune system.

Beginning to avoid sunlight now, which is also part of the MP, may also help you start to feel better sooner.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdala)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Be sure that you have your NoIR sunglasses before you start Benicar. PROTECTING YOUR EYES Where to purchase NoIR and Bolle 100 sunglasses. You want to order the NoIR sunglasses soon as they may take some time to be delivered.

Ketoconazole 2% cream does prevent the production of 1,25-D in the skin. For more information, please see:
How does ketoconazole cream work?

“Regular” Sunscreens do not block the sun’s rays that stimulate the production of 1,25D. However, there is a summary of a member assisted research project of the sunscreens which do contain Zinc Oxide.
Summary of information on Sunscreens containing Zinc Oxide

I hope that you will continue to read both here and at our sister site, www.Marshall Protocol.com.

I would also like to encourage you to register and post and future questions that you may have in the **General Discussion of the Marshall Protocol** thread. And, when you have a minute, please add the required signature line.. It will help the moderators when replying to you. Thank you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: chieko (---.hsd1.nm.comcast.net)
Date:   01-12-07 07:57

Thanks for the feedback.

I have researched the MP for about 2 months. During that time I made a major relocation move from south Florida to New Mexico to escape the heat and sun.

I am confident starting the MP by myself. I can order minocycline w/o an Rx but not Benicar. Perhaps you have some recommendations on that? I understand the significance of the Jarisch-Herxheimer reaction. I can't afford to doctor-hop and I am afraid my endocrinologist will not support the MP though I'll keep trying (he wants me to take Ca supplements!). ANy help will be appreciated!
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   01-12-07 08:09

Chieko,

Your extremely high 1,25D indicates that you are very ill. The immunopathology (Herx) that is inevitable during the recovery process may provoke serious symptoms.

It is illegal to obtain prescription dugs without a prescription. WE DO NOT RECOMMEND THAT YOU TRY TO DO THE MP UNLESS YOU ARE UNDER THE CARE OF A HEALTHCARE PROVIDER.

Please register at www.marshallprotocol.info and request a list of doctors in your area.

Best,

Meg
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Mäkelä Tuulikki (---.toimihenkilounioni.fi)
Date:   01-24-07 01:21

Hi

Thank God and You for this site. Ihave learned very much, when I have red Marshall Protocoll- and Sarcinfo- pages.

I tell in my signature below, that since year 2005 I have been avoiding sun and D-vitamin that I get from food. Now I was in the laboratory, and they took again these values of S-D1,25 and S -D-25. Both were lower than year 2005. But ratio is very high. D-1,25 was 99 pmol/l and D-25 was 12pmol/l. Ratio is so 8,25 pmol/l. Is it possible!!?? Please, can somebody tell me, what this mean?

I have not yet the doctor, who give me MP-care.


Systema
Dx- Systemic sarcoid, Iridocyclitis, Iritis, Uveitis, Neurosarcoid, Lung, Skin; Pre-MP; 3/1/05 1,25D 58,84, 25D 11,2; Prednisone years 1996-2003; Predforte for eyes 03-05; Omeca3 (fish supplement) year 03-04; Avoiding D & sun year 05
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   01-25-07 04:35

Systema,

After converting the numbers to “American” numbers which are the versions that we routinely do the D ratio with, your 1,25D is 41.25 pg/ml and your 25D is 4.8 ng/ml.

That means that your D ratio is 8.59. And, as long as you aren’t on Benicar or other medications that may alter the values it should be accurate. Yes, it is possible that it is that high. It is an indicator of the amount of inflammation that is going on in your system. It indicates that your immune system is still trying to fight the Cell Wall Deficient (CWD) bacteria that it has trouble finding and killing on it’s own.

I hope that you realize that Sarcoidosis does not go away on it’s own. And, that The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them. And, your immune system cannot do it on it’s own without the aid of the Benicar and pulsed antibiotics.

I hope that you will continue to diligently avoid ALL sources of Vitamin D to keep it down to a therapeutic level of 12ng/ml or less. The most obvious sources of vitamin D are eggs, fortified dairy products, fish, fish oil, and liver, and supplements which may contain vitamin D. You should also read the packaging on products each time that you purchase them, to be sure that there is no vitamin D added or vitamin D foods used as ingredients such as eggs or egg yolks.

Please see:

THE IMPORTANCE OF AVOIDING VITAMIN D AND FOLIC ACID

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

We also would appreciate it if you would register and post ANY future questions on our new site www.MarshallProtocol.com. You are welcome to start your own thread in the **General Discussion of the Marshall Protocol** thread. It helps us to help you more easily as all your posts will be in one area for us to refer to.

Another benefit to posting on www.MarshallProtocol.com is that there are more moderators there, as well as MP members from all over the world who are more than willing to help new members to start and get through the MP.

I hope to see you over there!

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Mäkelä Tuulikki (---.toimihenkilounioni.fi)
Date:   01-26-07 00:07

Hi Lottie

Thanks for the feedback and thanks that the answer came so soon. Unfortunately I have not find the doctor, who will consider the MP as a form of treatment. At this moment , all I can do, is keep avoiding D and light.

I will reread again those texts, that You mentioded, thanks.

Best wishes

Systema

Systema
Dx- Systemic sarcoid, Iridocyclitis, Iritis, Uveitis, Neurosarcoid, Lung, Skin; Pre-MP; 3/1/05 1,25D 58,84, 25D 11,2; Prednisone years 1996-2003; Predforte for eyes 03-05; Omeca3 (fish supplement) year 03-04; Avoiding D & sun year 05
 
 sarcoidosis after menopause
Author: Joanne Murphy (---.dsl.vic.optusnet.com.au)
Date:   02-08-07 07:37

I went through menopause immediately after the birth of my daughter and l was devistated. No one ever bothered to tell me of fertility problems with this immune disorder or the effects the meds could have on you. I was diaognised 4 months after the birth of my son. I suffered eclampsia and had a c- section at 7 1/2 months. I was treated with blood pressure tablets and had a severe life threatning reaction to these. Now l am very sensitive to these tablets and develop rashes if used continually. I do not stay on these meds for long and at the moment my kidneys are ok. To control any BP problems, l take aspro. So many things l am reading are starting to make sense and l now realise that l must of had this illness for a long time.
I was in a really bad way before they started to listen to me. They said l was tired because l had a c-section, i was tired because l was breast feeding. Yeh? Why couldn't l bend my foot, I could hardly stand up. Why was l passing out all the time. I wasn't tired, l was fatigued. There is a big difference. I lost the mobility of my legs and hands I couldnt even hold a cup with out dropping it and still they said it was normal, you just had a baby. It wasn't till l collapsed and had further tests that they realised that something was wrong. My white cell count was at 78,000. So many of your symptons l now can relate to.Now, suffering with early menopause, l am getting conflicting vibes. I have had sever hot flushes but sometimes l am in sweates for days. Do l have a fever? I am aching all over and my feet are getting really sore on the top.. From my big toe to my ankle it is like a big red welt following straight up my vein. My legs are twitching like made and l have to sleep with my feet up high. I am always thirtsy. I can not stand being out in the hot sun nor do i cope with hot weather as it makes me very tired. My stomach puffs up and l swear l go up 2 sizes when it does. I cant handle rice or pasta(love the stuff) as it makes me fill so bloated and l start experiencing pain in my stomach. I am having severe cramps in my neck and head. It feels like some one has an elastic and pulls it tight and it shoots right up the side of my head to the top of my brain and POP. I see stars with that one. I can't handle salt as it sets off my blood pressure. Is any one else feeling these symtons with menopause? Balance is another problem and l am now starting to have problems with my eyesight as well. I was never a big person ( l am 172cm hgt) and was always skinny (45kg) never budged from it. After menopause l put on heaps. Why now? Why not when l was on the meds? Is there an underlying problem going on here as well? What conection to food groups is there with the sarcoidosis? I have had an infection on my foot which l have not been able to get rid of. Are the doctors giving me the correct dosage? When i visit the doctor l am told that the sarcoidosis had burnt itself out and l dont have a problem. If l am sick(vomiting) l have to stay lying down because as soon as l vomit l black out and every time after that. One session l had we counted that l had passed out 37 times. Boy my head hurt. The only way l overcome that one is by lying still and flat. sometimes l can be in bed for 3-4 days getting over an episode. So, is this still menopause only? I have had it since l was 42 and l am now 45. My joints ache a lot when l do any activities so l have to pace myself. I seem to get allergic to a lot of things and the more l have of it the more the reaction and severity l get. Is this the sarcoidosis?
Any suggestions?
 
 Re: *** POST YOUR TEST RESULTS HERE **
Author: Lottie (---.proxy.aol.com)
Date:   02-10-07 06:53

Joanne,

Welcome to SarcInfo. Because SarcInfo has become outdated, I hope that you will join us on our new site >> www.Marshall Protocol.com

There is information on how to register there at this link >>

How to Register and Use This Board

There is information at our new site MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

We now know that Sarcoidosis is caused by Cell Wall Deficient (CWD) bacteria, which have learned not only how to avoid the immune system, but to live within the very cells of the immune system that are supposed to kill them. The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

The Marshall Protocol -- simple explanations

Your symptoms are not at all unusual. You may have many symptoms of Sarcoidosis that you don’t realize are related to your disease. People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

And Sarcoidosis does not go away on it’s own. The NIH ACCESS Study finds Sarcoidosis does not go away.

Let us know here if you have problems registering at www.MarshallProtocol.com, where we can help you more easily.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
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This is an archive site, membership and posting are no longer allowed.

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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