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 The material here provides useful background, but most of this site is now out-of-date.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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 Losing weight and fat storage
Author: KaitlynK (---.vnnyca.adelphia.net)
Date:   09-20-02 18:51

I'd like to ask the "Stupidest Question of the Day", if you don't mind, Trevor.

Since Vitamin D is stored in fat and my granulomas have been famous for producing the stupid stuff, would it be better for me if I was not overweight? In other words, can fat tissue store only so much Vitamin D and then the rest, if there's extra left over, be secreted? If that was the case then it would behoove someone with a Vitamin D problem from sarc to be as thin as possible, wouldn't it?

These kinds of questions come to me as I peruse these boards. Sorry.

KaitlynK
 
 Re: Losing weight and fat storage
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 19:04

Far from being a stupid question, Kaitlyn, I have used your suggestion to start a new thread. Very perceptive of you to figure this one out.

Well, the problem of being overweight is far worse than it seems. We all know that Sarc patients are notorious for being overweight, but why? Everybody tries as hard as they can to keep that weight off. Prednisone is the usual reason for increases in weight, but why can't we get it off when we stop the Prednisone?

Vitamin-D (or a metabolic equivalent) is stored in the body's fat tissue. When we burn off that fat by dieting, then the stored D metabolite is released into the body. Which increases our 1,25-D level. We feel terrible, so we go and eat something to make us feel better. And the weight never drops. It keeps piling on, or, at best, remains stable.

I have lost 20lbs in the last few months, and I know from first hand experience the delicate balancing that is required to keep the released D from causing surges in the 1,25-D and the need to keep burning it slowly and steadily. If I hadn't been totally free of symptoms before I started the dieting I know I never could have done it. I have 20 lbs to go to get back to the weight I was before those "experiments" with the prednisone.

So there you have it. It is certainly not the "Stupidest Question of the Day". It is one of the most important.

..Trevor..
 
 Re: Losing weight and fat storage
Author: Caroline (---.win.ORG)
Date:   09-20-02 21:58

Hello Trevor,
So .... should we get the D in total control and then try dieting? Being optimistic I saved some 'skinny' clothes. (8-)

I never had a eating or weight problem but true as you say, I start feeling bad when I have been 'good' trying to diet, so just eat some more.

Chubby Caroline from MO
 
 Re: Losing weight and fat storage
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 22:05

Yes, I recommend getting 1,25-D down to the 20-30 pg/ml before seriously starting to diet.

It is possible to diet even without D control once you understand what is happening, but the misery is probably not worth it, IMO

..Trevor..
 
 Re: Losing weight and fat storage
Author: KaitlynK (---.proxy.aol.com)
Date:   09-21-02 06:21

How fascinating!!! My D levels are down and my ACE is down. I"m on 5 mgs. prednisone per day and if things look good will try lowering that dose starting in December. I'm going to go for the weight lose and will let you know what happens.
KaitlynK
 
 Re: Losing weight and fat storage
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-21-02 19:31

Dear Kaitlyn:
I was devastated when on Prednisone I ballooned up with weight. After weaning off Prednisone this last time, I lost 50 lbs. but it took me a long time...almost a year.
I ate everything but only in tiny proportions. Once I start to deny myself a certain food.....that's when I must have it. And also when I go on a special diet and eliminate certain foods.....those are the very ones I crave. ?
I don't know why Prednisone gives you such an enormous appetite....does anyone know the answer?
Caroline McG.
 
 Re: Losing weight and fat storage
Author: Denise Testa (---.connect.com.au)
Date:   09-21-02 19:46

This is a very interesting point.

When I was working in pathology and first noticed that my immune system appeared to be deteriorating I was an only slightly overweight, (my perception of myself) size 14 around 70kg. When I see photos of myself from this era, I really was not overweight at all. I certainly did not look the least bit fat or flabby, even if I had a lower opinion at the time. Gosh females as silly at times. However, as I got worse, the more weight piled on. By the time I had lost my path job and got a new one at a High School I was beginning to get quite flabby and gone up a size. I vowed to start going to gym when I began university in lieu of another job. I wanted to get my health straightened out before I went back full time in the work force. I was beginning to get severe headaches and had that sarcoid 'sore all over feeling' - so bad in my legs and feet I had to go downstairs sideways like a crab - no kidding! By this time exercise was out of the question, I gave up Scottish Country dancing which I did at least three nights a week most weeks. If I danced at night I felt even more sore next day. Sometimes I couldn't walk in the morning for about an hour without severe pain. I blamed the dancing, but deep down I knew it was more. Being out at night seemed to be very fatiguing, but I put it down to age creeping on. Again deep down I knew it was more, because many of the people I danced with were much older than I was. Into their sixties and seventies. By the end of that first year at Uni I was a size 16 and rising.
In second year I felt even worse. Fatigue was a major factor. I ached all over, often had a severe headache, my nose bled (all over an exam paper) regularly, I had sweats, the left side of my face swelled and went numb periodically. And while all this was happening I was piling on the pounds. When I begged to see an immunologist, at my first weigh-in, I was 86kg. I went up to 92kg by the end of 2nd year uni and was in a size 22. I was obese. In third year the old lung symptoms kicked in and I became sicker. I lost weight with bronchitis because I lost meals through coughing. I was not diagnosed until my fourth year at uni. Since getting the disease under control with Plaquenil and staying out of the sun I have lost 10kg. I was 91kg when I began the diet, and am now 81kg. I guess I am slightly obese now and heading for just plain old overweight. I am back in a size 18. I had wondered about fat and Vit D. I am glad then that I have only had half kilo losses, although one week I did lose 2.6kg.
I have felt fairly OK on the diet - no real ill effects. I could easily lose 2 kg a week but I am afraid of loosing that stuff into my system. Looks like my instincts might of been right. However, when dieting it is essential to drink lots of water. The water surely helps does it not? Could I increase my losses without danger if I drank more? It just goes to show that when you do gain in health, you will lose weight. I didn't think I would succeed. I still have a long way to go, but I am determined to do it. The other thing about weight gain is, that I think, to suppress pain one craves carbohydrate. This is not simply psychological - there is a physical basis for this also - carbs are needed to synthesize brain opiates to suppress pain. That could be another reason why sarcoid sufferers are fat. Is there any basis for this? Denise
 
 Re: Losing weight and fat storage
Author: Cher (144.139.191.---)
Date:   09-25-02 09:17

Hey everyone,
Well since I'm back online, I may as well get lot's of my opinions in lol.
I have told u this before (that I was diagnosed in 2000) but i haven't told u that in 1999 I had a major surgery on my stomach to fix a tear in my stomach. Of course being my stomach meant that I was on a very minimal diet, small amounts of liquids only for many months.
Anyway to cut this down ... I lost a heap of weight almost half my body weight & was slim for the first time in years lol.
Following my diagnosis in 2000 & being in hospital for a week short of 5 months I ballooned to my prior weight plus half that again.
Currently I've been doing the low Carb diet & it's absolutely amazing. I have cut way back on bread, pasta & rice etc. I am eating way more vegies & fruit & it's doing wonders for my weight. Obviously I've also increased my protein intake so lot's of fish & even back on red meat ... but i'm doing well as far as weight loss goes (slow but sure).
Thanks everyone & stay positive
Cher
 
 Re: Losing weight and fat storage
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-25-02 09:29

Cher, it's amazing how satisfying a packet of whole sugar snap peas can be - for just 120 calories. And there is only 160 calories in a whole (small) tin of canned tuna (Trader Joe's brand). There are some amazing treats out there - glad they are working out for you, too.

..Trevor..

Addendum by Meg: We now know that tuna contains some Vitamin D.
 
 Re: Losing weight and fat storage
Author: Cher (144.139.191.---)
Date:   09-26-02 05:13

Trevor,
As usual u are so right. I had forgotten that I didn't have to eat a packet of chips or cheese crackers for a snack. I had also forgotten that so many vegetables whether cooked or raw are just so good.
It's just breaking the bad habits that's all lol.
Cher
 
 Re: Losing weight and fat storage
Author: Jillian (65.160.80.---)
Date:   09-26-02 06:27

Denise (or anyone else):

In your post you state that "carbs are needed to synthesize brain opiates to suppress pain." Any clue where I can find more info on this, the theory is interesting to me...

Jillian frm North Dakota
 
 Re: Losing weight and fat storage
Author: mona (---.lai-ca-1.rasserver.net)
Date:   09-26-02 13:08

Very interesting thread! Trevor your suggestions on good foods that satisfy are great. I, as surely others would appreciate hearing suggestions from anyone who have tips of foods that help keep the craving in check. I personally am an IMPULSE eater. I can fight hunger cravings, it's stress triggers that break my discipline. What helps you?
Mona
 
 Re: Losing weight and fat storage
Author: Denise Testa (---.connect.com.au)
Date:   09-27-02 01:56

Glad you found it interesting Jillian. I have to admit, I think I saw it a few days ago on a Discovery Channel doco about the body's metabolism as I was watching my breakfast.

It made perfect sense. At my first appointment with my new immunologist, whose special interest is in sarcoidosis, I explained that I put on more weight as the disease symptoms worsened, and that prior to having symptoms I was only about 10 stone, which was still overweight but only by a few pounds, whereas by this time I was a couple of stone overweight. He told me it was because I was feeling so horrid and to counteract it, I was eating more. I assumed it was a depression thing but seeing this doco also made sense. The carbohydrate craving, for rice, and pasta and bread could have been set in train to help kill the pains in my tendons.

He also insisted that as I had improved so much and appeared to be in remission that it was time to lose the weight. Before the disease was under control such a thing wasn't contemplated - so there must be a link.
I will look into it and let you know more.

Denise
 
 Re: Losing weight and fat storage
Author: Denise Testa (---.connect.com.au)
Date:   09-27-02 02:11

Here are two links which I found for you Jillian.

One in layman's terms
http://www.thedietchannel.com/weightloss5.htm

and another abstracts of dietary research.
http://www.thedietchannel.com/weightloss5.htm

As the body is always aiming at homeostatic balance is it any wonder that people with sarc would gain weight.

There are some people who get it who actually lose weight. I know my mother scoffed at me when I announced to her that I thought I had sarc, "You haven't lost any weight!" she countered, but that is what the text books said.

I think this is another myth about sarcoid that needs to be debunked.

Denise
 
 Re: Losing weight and fat storage
Author: Jillian (65.160.80.---)
Date:   09-27-02 06:47

Denise, thank you for the links.

I've talked this over with a couple of friends of mine that have severe pain with fibromyalgia--both are over 100 pounds overweight! They'll be glad to see this too.

Maybe doctors should be told to watch the Discovery channel

'til later,
Jillian from North Dakota
 
 Re: Losing weight and fat storage
Author: Cher (144.138.225.---)
Date:   09-27-02 09:41

Hi Everyone,
just reading Denise's posts I remember that one of the reasons my diagnosis took so long was that I had not lost any weight (which i was told that was one of the most common symptoms of Sarc). My own G.P was convinced I had Sarc but the specialists all said I couldn't have it with my weight problem & that I was putting on more weight the sicker I got (even without the Prednisone).
So yeah it is a weird one. Just as Denise said : I believe that losing weight with Sarc is just another myth & not at all a symptom lol.
Cheers everyone .... Stay Positive,
Cher
P.S ... I suppose the fact that those of us with Pulmonary Sarc especially would have the biggest problem ... they do say that one of the best ways to lose weight is through exercise. I know that I for one have been unable to do any exercise for a long time, especially the aerobic sort u need to do to lose weight. Maybe when I can breathe again I can try again lol.
Bye...
 
 Re: Losing weight and fat storage
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   09-27-02 13:13

Hello everyone,

I have a weight gain problem too. I can't gain any!! I'm 5'6" and weigh about 111. I hate it! I eat anything I want. Especially love icecream, fruit pies and cookies after dinner. (and often in between).

Kirk
 
 Re: Losing weight and fat storage
Author: Caroline (---.win.org)
Date:   09-27-02 13:31

Kirk,

That is just mean!! HAHAHA All us gals fighting to lose a pound or two. You are SSSOOOO lucky, enjoy those cookies and ice cream for us.

Formerly skinny and very jealous, Chubby Caroline
 
 Re: Losing weight and fat storage
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   09-27-02 16:29

Caroline,

Don't intend to be mean, but something isn't fair about the whole thing. I don't feel like I look good this thin at all. About 12 years ago I was on pred, and didn't gain a thing either!

Kirk
 
 Re: Losing weight and fat storage
Author: sharlene von berg (---.saix.net)
Date:   11-10-02 05:22

HI
I am overweight and have joined weight watchers but battle so much, some weeks I go and have lost and then I go the following week and have picked up 2kgs or more. I feel so depressed about this. I crave sweet things all the time . Could some one also tell me where I can find info on what foods to avoid that contain vitamin D.

Thank you to each and everyone for this wonderful opportunity to share ones sarc problems.
Sharlene
 
 Re: Losing weight and fat storage
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-10-02 06:20

Sharlene,

Read the labels on all packaged foods and dairy products. Most vitamin D in foods is due to fortification of packaged or processed food.

I craved sweets, too - until I worked to get my vitamin D levels down and began taking minocycline. (Stay out of sunlight.) I deliberately stopped all sweets, to reduce the potential of side effects from the antibiotic. Now I do not crave sweets, especially the sugary soft drinks I thought I couldn't live without (due to the energy surge from the sugar and caffeine). After one month of antibiotics, I began to lose weight with this plan. I am feeling good.

Belinda
 
 Re: Losing weight and fat storage
Author: J.B. (---.proxy.aol.com)
Date:   07-30-04 03:14

A lot of people are complaining about being fat. I which I could gain some weight. I am 5 ft 8 in and I used to weigh 98 lbs before I got pregnant. I now have 5 children. (2 sets of fraternal twins and a single child) I gained 30 lbs and I am still skinny. I didn't gain much weight while taking predinsone. I got fat in the face (Moon face) and mid section. I am no longer on predinsone, and my face has slimmed down. However, I still have a large amount of fat in my mid section, that will not go away. I don't think it ever will.
I eat more than the average person and I am still skinny at 135lbs. I look like I am about 4 or 5 months pregnant due to the large amount of fat left in my mid-section after getting off predinsone. I which there was something I could do about it. Most people that know me think I am pregnant again. I often hear things like, Wow, you are pregnant again!!!!, or when are you going to stop having children, or when are you going to have that baby, etc. It hurt my feeling because I am very sensitive about the weight in my mid-section. I would feel better if I was big all over, because my belly wouldn't be as obvious.
One day I went shopping and another customer directed me to some baby clothes on sale. Once a bartender tried to talk me out of buying a glass of wine. He said it would harm my baby. It's almost a daily thing. I thought about having cosmetic surgery on my abs.
I have lung sarcoidosis and my large belly makes it harder for me to breathe because of the poor muscle tone. Am I the only person who has gained a lot of fat around the mid-section because of predinsone?
Also, is it okay to have that type of surgery with sarcoid.
 
 Re: Losing weight and fat storage
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-30-04 08:33

J.B.,

We do not recommend that sarcoidosis patients have any surgical procedure that is not absolutely necessary. Your high level of inflammation will impeed the healing process.

Meg
 
 Re: Losing weight and fat storage
Author: Pippit (---.asm.bellsouth.net)
Date:   07-31-04 23:50

Hello J.B.

Some people have noticed that Benicar caused them to start losing weight. Sarc patients have a number of metabolic problems in addition to those caused by Prednisone.

Once you treat the disease directly with these medications used in the protocol you become healthier overall.

Please let us know how things are proceeding towards treatment.

Pippit
 
 Re: Losing weight and fat storage
Author: Debbie D (68.73.190.---)
Date:   12-08-04 13:48

I have always had a weight problem from the time I was 7 years old. I managed my weight but the last 7 years have been terrible. I have done (diets) them all and go up and go down. Last year I lost 25 lbs and for the first time is several years felt OK about myself but my sarcoidosis makes it impossible for me to exercise which is the only way I can diet successfully. I am the highest ever and hate myself. I have been on protocol for 3 months and have asked many about weight gain and sarc and pleased to see some connection for others as well. I do not feel so alone. Good Luck to all as we heal together.

The joke is one symptom of sarc diagnosis is "weight loss"..... ha, ha
 
 Re: Losing weight and fat storage
Author: Wytnez (---.austin.rr.com)
Date:   12-08-04 16:36

Hi,

I was just diagnosed with sarc of the lungs. I haven't lost any weight from it either. But once I find a Doctor who will prescribe the MP I hope to start exercising again. Debbie how old are you?

saj

sarc lungs 1,25D=32. D25=10 1/24/05 Beni q6hs, 2/11/05 Mino 25mg,3/4 mino 50mg, 3/24 mino 75mg ,4/15 mino 100mg, phase II 5/2,
 
 Re: Losing weight and fat storage
Author: Wytnez (---.austin.rr.com)
Date:   12-08-04 18:14

Dr.Marshall,

I it true that you had sarcoidosis? If so did it affect your lungs? I just watched your presentation and I must say that I am very glad that I found this site and I am glad that you have developed the MP but you didn't mention how the MP helped you overcome this nasty disease.

saj
 
 Re: Losing weight and fat storage
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-08-04 18:23

Shirley,
My Xrays are at URL
http://sarcinfo.com/xrays

I had stage IV in 1978, when I was given 18 months to live. I decided to study Biomedicine instead. It took quite a while to figure the disease out, but I did...

My FEV increased about 20% after about 6 months on the MP. My gas transfer ratio DLco has returned to about normal from about 50%, and this has made a huge difference to my endurance. You can see by my Xrays that I have lost a lot of both lungs to fibrosis, yet when I was staying in Budapest (at the conference a few weeks ago)
http://www.marshallprotocol.com/forum18/1270.html

I chose a hotel about a mile away, across the Danube, with a 20 minute walk each way morning and night. I think that tells you all you need to know about recovery from this disease...

..Trevor..
 
 Re: Losing weight and fat storage
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-08-04 19:04

Debbie and Shirley,

I believe it is far more common to be overweight with sarcoidosis than to be underweight, especially if you've taken prednisone. As your endurance improves on the MP with resolution of your inflammation, you will be able to exercise again.

In the meantime, a low carbohydrate diet is a very effective way of losing weight and improving your cholesterol profile. I recommend the book, Protein Power by Michael Eades, MD or any of Dr. Atkins books to help you understand how an adequate protein, low carb, high fat diet is so effective.

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: Losing weight and fat storage
Author: Lottie (---.proxy.aol.com)
Date:   12-08-04 19:35

When I had the CT scan with dye that led to my Sarcoidosis diagnosis, the radiologist asked me two questions...

1. Did I have night sweats? The answer was "yes".

2. Had I lost a lot of weight recently? The answer was "yes", as I had lost about 30 pounds in 2 months... and I wasn't trying. In her analysis of my CT scan, she mentioned that I should have a biopsy of the lymph nodes, and that the scan was indicative of Lymphoma, and Sarcoidosis. She felt that it was probably Sarcoidosis based on my answers, and it turned out she was correct.

I too had had weight problems most of my life, and I did gain a LOT of weight while I was on Prednisone. Now that I'm off the Prednisone, I have once again lost weight. I have lost everything I had gained on Prednisone, and an additional 9 pounds as of today. I'm glad I still have my "skinny"(for me) clothes for the future.

I know that part of the reason for the weight loss is that my appetite is poor. Preparing meals is a major effort, and I don't have that much energy sometimes, and I believe that just thinking about it sometimes tires me out!

I am on the MP, and hopefully, I'll start having some spurts of energy... I can see evidence that it's working it's magic, so I'll look forward to having the energy to cook once in a while

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: Losing weight and fat storage
Author: Debbie (---.lgca.org)
Date:   12-09-04 08:32

Shirley:

I am 48 years old and was diagnosed with pulmonary sarc in May. I have been on protocol for 3 months. You can read my post on marshallprotocol.com, Debbie D., Antibiotics plus Quertcin.
My problems began with a dianosis of Menniers, hearing loss, 7 years ago. Followed by herniated disks, carpol tunnel, etc.... Have had chronic cough which began when I was 19. I have suffered from depression my whole life and weight problem began when I was 7.
 
 Re: Losing weight and fat storage
Author: Wytnez (---.austin.rr.com)
Date:   12-10-04 09:55

Well I am so thankful that I haven't started prednisone. I refuse to take it. I just have got to find a Doctor that will treat me with the MP. There is a Doctor or should I say a nurse practioner who uses the MP for lyme disease. I hope she will treat me with the MP for sarcoid. I am waiting for my new patient packet right now. I guess the next step would be for me to get my 1,25 hydroxyvitamin D and 25 D tested to see what the values are. Then hopefully I can go from there.

The wheezing has went a way quite a bit but not completely gone. I am trying to think back and see if there were some other problems to suggest that I have had this for a long time. I am 39yrs old and I just want to live a healthy life. We were trying to have a baby but now it looks like that won't happen so we are thinking adoption once I can get treated with MP. I will order my glasses today and I have already started to eliminate Vit D from my diet. I don't drink milk and I don't eat fish or should I say I haven't had any in a long time. Now the issue is the sun light. I can't lose my job. I guess I just need to cover up completely when I go to work. My job is only about 15 minutes away. But what about lights in the job? I work on the computer all day. Do I just need the Noir's for inside to block the vit D from the computer and the lights? I was thinking about seeing if I could work from home the first 3-6 months but I bet that won't fly. So I have got to do something.

saj
 
 Re: Losing weight and fat storage
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-10-04 10:46

Shirley,

You should be able to wear the lighter NoIRs at your workplace. I did and I work with the public. It will be important initially to wear them all the time but you will find that in a few months, you will only need them when looking at the computer (turn the brightness down too just enough so you can see well). Many workplaces are lit with fluorescents and that is the worst. I haven't needed my NoIRs in my office for some time now but the other day I found myself in a different office listening to an inservice. It was much brighter than my office so I got my indoor NoIRs and put them on. No one commented because they are used to me wearing them when needed.

If you are talking about the NP that I'm thinking of, she will need your reassure that you will follow the MP exactly because she has had some failures among people who would not or could not comply with sun/lights avoidance. She will want to see your NoIRs. It's possible to do a little cheating with the sun/lights exposure (so I think you can continue to go to work) but too much and the protocol is sabotaged.

If you do a search of this site and MP.com, you will find many discussions of avoiding sun/lights and discover some helpful hints. Here are two to get you started:
AVOIDING VITAMIN D AND SUNLIGHT
THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

Best,

Meg
 
 Re: Losing weight and fat storage
Author: Wytnez (---.austin.rr.com)
Date:   12-10-04 13:43

Meg you are the best! I hope it's the one you are thinking of. I got the new patient packet today and I was getting discouraged because she only lists lyme, CFS and not sarcoid. I am going to write a short letter explaining why I need to be treated with MP. I will definately be compliant!! I want to beat this horrible disease and besides I don't go out in the sun usually at all only to go to work and come home. If we do yard work it is usually very early in the morning. ( I used to laugh and say my neighbors probably hate us.) But I won't be doing any yard work once I start the MP. And to do shopping I wait until either early morning or late at night because I like to beat the crowds. But since this diagnosis I will make darn sure that I protect myself. I am going to order my glasses. Can I get them at Lens Crafters? I need to use up the money in my flex spending account and what a great way to do it.

I was just explaining to my husband about the sunlight and he is totally willing to be compliant . We will go and get dark curtains for all the windows. I am so ready to get started. I am not sure how long it will take her to get me in but I hope it won't be too long.

saj
 
 Re: Losing weight and fat storage
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-10-04 13:59

Shirley,

If you haven't yet, please read the entire What Is The Marshall Protocol forum at MP.com. It has a thread Protecting Your Eyes that has the contact info for the NoIR people. These are medical grade sunglasses with a patented coating the blocks infrared rays as well as UVA and UVB. You cannot get them anywhere else. You can call them at:
1-800-521-9746 (toll-free)
1-734-769-5565
They are very familiar with the MP requirements and will ask you specific questions so you get the glasses you need. Tell them you saw their website and they'll give you a 10% discount. Their service is sometimes slow but they replace any glasses that you may have a problem with.

It's a pleasure to read your posts because your enthusiasm to do everything right and get well is heartwarming.

Best,

Meg
 
 Re: Losing weight and fat storage
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-10-04 14:04

Shirley,

No one has reported that NoIRs are available at Lenscrafters, but it may be able to pay out of pocket, ordering from NoIR at 1-800-521-9746 or http://www.noir-medical.com/, then submit a receipt for reimbursement. You will need to check to see if this would be covered.

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: Losing weight and fat storage
Author: Debbie D. (---.lgca.org)
Date:   12-13-04 05:06

I was pondering the issue of weight and realized that all of my different sarc symptoms appeared after weight loss and surgery. I have noticed a pattern of weight loss and shortly after a new set of symptoms appeared.
Tonsils at 19 = weight loss and chronic cough began as did when I had my hysterectomy, carpol tunnel, etc..... My pulmonary symptoms begain last year after loosing 25 lbs. Deb
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Historical perspective on Sarcoidosis:


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

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