Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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-site, or the Autoimmunity Research Foundation.

This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.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 1^st 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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Exercise

Author: Raymond F. (---.proxy.aol.com)
Date: 08-16-02 10:41

I was wondering if anyone would share thier experiences with regards
to how exercise affects sarcoid. I have sarcoid and over the last 60 days
I have been running about 15 miles per week. My sarcoid is pretty much
in my abdomen and I have been having a lot of stomach problems.
I have been vomiting bile etc on some mornings.

Also are there any indications that certain foods or drugs are a problem.

I am currently on Allegra, Levoxyl,Zestril,Prevacid and Remeron. I had been
on Lipitor for the last 60 days but stopped because of my stomach.

I cannot tell you how great it is to be able to come somewhere and get
some answers !

Ray

Re: Excercise

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-16-02 11:34

Raymond,

Do your running and outdoor exercising at night. There are lots of threads on this board that explain why sunlight causes sarcoidosis symptoms and what laboratory tests you need to monitor the dysregulated hormone/vitamin D. I think you will be better after a few weeks out of the sun.

I had to give up my daily walks in the sun. Sunlight makes me feel good at first, but so does alcohol.

I had bouts of daytime nausea and vomiting, especially in the morning. I suffered this misery off and on for years, but no one could determine why. I would still be in the same fix today if Trevor had not begun sharing/shouting/repeating the fact that sarcoid patients must avoid the sun's rays to get their symptoms under control. 8)

Take care,
Belinda

Re: Excercise

Author: Kirk (---.dsl.sndg02.pacbell.net)
Date: 08-16-02 12:07

Belinda,

Thank you for directing me to this site last week. I have had a bad week, especially a bad day yesterday. My joints ached probably worse than I can remeber. I got to thinking about it, and what may have triggered it. I wonder if it was the sun I got about 3 weeks ago(?) I went to a roof top get together and sat out watching a parade. I had a hat on and used sunscreen and was shaded by others standing around me, but I still got a lot of sun. I'm going to the doctor at the end of the month and I'm going to request a test for D. This morning I had pulmonary function tests done, and there was a slight decrease in function since the last time this lab tested me several years ago.

I hope to get an exercise area set up this next week so I can get back at it. I absoluty can't run anymore!!! I do know that after lifting weights for a period of time I had improved my ability to draw in air, but not capacity, and felt a LOT better than I am now.

Kirk

Re: Excercise

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-16-02 13:23

Kirk,

You are probably correct in linking your current pain to the sun at the rooftop party, especially if you've had ongoing solar exposure since then. Once I've stocked up my body's reserves of inactive vitamin D, it doesn't take much to throw me into a frenzy of symptoms that takes weeks to get over. So you have to understand it is a cumulative effect. You've done a good job in figuring out cause-and-effect. By paying close attention, you will understand more about how your body reacts to sunlight.

We all know we need to eat a healthy diet and exercise to live well. That's going to help us be healthier, but if we have sarcoidosis, we just have sarcoidosis. There have been times I couldn't walk to the end of the block and back home. Persistence can help you build stamina, but I never thought I could exercise away the pain in my chest, muscles and joints. Common sense helps.

The best tool I've found is knowledge. Keep reading on this site. Click through on the links to articles and use the medical dictionary. The more you read and understand, the more you will overcome fear and frustration.

Be sure to get both vitamin D levels tested!

Take care,
Belinda

Re: Exercise

Author: Karen (---.brsr6.xdsl.nauticom.net)
Date: 08-21-02 06:14

Ray,
I began exercising in earnest at a health club about six weeks ago. I joined
about a year ago and had started and stopped, according to joint pain and breathing difficulties, throughout the year.

I decided that I would never get better without determination and consistency. I have stage III sarc and have been on Pred for four years. I was as high as 40mg daily and now down to 5mg every other day. I hope to be off it soon.

I have to say that my stiff ankles and hip pain have almost disappeared since I began to exercise.

I also began to concentrate on my breathing. I always felt fatigued exercising until I realized that I was just mouth breathing. I now breathe in through my nose and exhale through my mouth. It is amazing how my endurance has improved with just learning how to breathe properly.

I do weight machines and the treadmill. I am also beginning to use the life cycle.

As far as abdominal pain-They found some suspicious lesions on my spleen but my severe abdominal pain was on the right upper quadrant of my ab. I had numerous tests and the pain continued for a year and a half. I had my gall bladder removed because that wasn't functioning. Even after the removal, my ab pain continued. I tried elimination diets but nothing seemed to help. Finally, I was able to determine that artificial sweeteners were a source of the pain. I eliminated them from my diet ( even started to use Tom's natural toothpaste). The pain has disappeared. I have not had pain for two months! (Some literature suggests that artificial sweetners contribute to MS)

I'm not sure if this info helps you but it is good to share success stories-it can give some hope.

Karen

Re: Exercise

Author: Raymond F. (---.proxy.aol.com)
Date: 08-21-02 10:29

Karen:

Thank you for the input on the sweetners, I will give it a try !

Can I ask how they determined that your gall bladder was not
functioning ? My GI doctor just tells me it's sarcoid, live with it
but it isn't that easy !

Thanks

Ray

Re: Exercise

Author: Karen (---.brsr6.xdsl.nauticom.net)
Date: 08-21-02 13:55

Dear Ray,
I had a hydascan (spell?) which can determine gallbladder function. Most gallbladder pain is located under the right rib cage. My pain was to the right of my navel and I never was sick to my stomach-just severe, burning pain. It didn't appear to be a classic gallbladder condition (nausea is typical). The hydascan indicated that the gallbladder was functioning at only 4%. If I remember correctly, a normal gallbladder functions at 35%.

I had an endoscopy, colonoscopy, barium enema, pelvic and abdominal ultrasounds, and a CT scan of the abdomen and pelvic area before I finally had a hydascan.

Along with the artificial sweeteners, I did eliminate most cheese from my diet too. The combination, along with a diet of more fruits, vegetables and water, have given me 100% improvement. It is hard to pinpoint the real culprit; nevertheless, my newly found good habits are showing good results.

I do have to say-eliminate diet soda, sweet n low and equal, dextrose and other "oses. Some believe that artificial sweeteners can cause liver pain.

Hope this helps.

Karen

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 08-21-02 14:02

Karen,
Please make sure you get the D tests done.

If your "100% improvement" is related in any way to cutting back on cheese (calcium) you need to know what your 1,25-dihydroxyvitamin D level is, because it could indicate that the calcium which your body needs is being leeched from your bones.

..Trevor..

Re: Exercise

Author: Karen (---.brsr6.xdsl.nauticom.net)
Date: 08-22-02 05:46

Trevor,
As a matter of fact, I haven't taken calcium supplements in awhile. Should I begin to take them again and see how I feel? I was told to take calcium because of the pred.

Thanks,

Karen

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 08-22-02 05:52

Karen,
Everything you ever read about Calcium does not apply while you have sarcoid inflammation.

Prednisone totally stops bone regeneration. Calcium (and/or D) supplements cannot change this action of Pred in any way.

Get the D-Tests done and I can help you figure out the best strategy.

..Trevor..

Re: Exercise

Author: Patricia Fenison (166.124.17.---)
Date: 08-30-02 13:01

I have had lung sarcoidosis for at least 23 years. When I was diagnosted, I knew I had to do something to strengthen ny lungs so I started exercising vigorously, (running at least 1 mile three times a week) but after my lungs collapsed in 1993/94, not from the exercise but other stress related problems I could not run or walk (not even 4 steps without oxygen). Praise God I went to a naturopathic doctor just recently who put me on herbs, told me to walk the stairs (200 stairs) in the city I live in (Redondo Beach, California near my house) These stairs are already in place as they use to be a training base for the military. I did this for a while, very difficult, but I never say never. I can now walk 2 miles and run up the driveway upslop at the College where I walk. I have also changed my diet tremendously, colon cleansers are essential. No sugar (sometimes, but very rarely) no flour and lots and lots of green vegetables and fresh fruit, also juicing.

Exercise is the greatest thing you can do for lung sarcoidosis. If you can only walk 5 mintues do it, you will be glad you did.

Since I have done all of these things, my lung capacity has increased since 1993 by 20%. Praise God!!

Re: Exercise

Author: JC Miller (---.nash01.tn.comcast.net)
Date: 08-30-02 21:03

My doctor told me that I needed to start exercising. To tell the truth I am always to tired to do much after work and classes but he said it would help with loosing my breath. I can walk for it seem like just a few mins and it's like a bear hugging me and my heart pounding so hard it feels likeit going to pop. I use to work out 4 times a week. Anyway can anyone tell me some good exercises to start out with.

Wish you well,
JC

Re: Exercise

Author: Karen (---.brsr6.xdsl.nauticom.net)
Date: 08-31-02 09:20

Dear JC,
As I stated in an earlier message about this topic, I believe we need to learn how to breathe properly while we exercise. I felt so sluggish and my legs were very heavy until I learned to how to breathe.

Breathe in through the nose and exhale out of your mouth. Most people are mouth breathers and they forget to use their nose!

When you use weights, exhale like you are blowing up a balloon when you exert by pushing or pulling. Then breathe in through your nose when you need to inhale.

Work up gradually. I started on a treadmill, without an incline (tough on the joints when you climb). I barely could do 10 minutes in the beginning. After eight weeks, I am now up to 30 minutes. If a treadmill isn't available to you, walk a school track since they are nice and flat.

Re: Exercise

Author: JC Miller (---.nash01.tn.comcast.net)
Date: 08-31-02 20:52

Thanks Karen I went out for a brisk walk today and it felt real good. I used what you said about breathing and it did help. However the hornets that chased me didn't....LOL I hyperexstended <spelled wrong) my knee But I will be backout there going at again. I was thinking about getting a indoor bike that works your arms as well I live in Nashville and the heat here kills me.
Again thanks,
JC

Re: Exercise

Author: Diane (---.proxy.aol.com)
Date: 08-31-02 22:11

Hi to all,

My problem also is exercise. I continue to tire easily but I have learned not to push myself like I used to. I have a membership at a spa, which I have not used for quite sometime. I think that would be to harsh. I am going to start back up with my early morning walks. I felt better when I did them. Actually since I have decreased my prednisone, gradually of course, I feel awhole lot better now. I don't sweat as much anymore but I have been watching how much sun I am exposed to also. You know I still get short of breath easily and I am learning to cope with that. I still feel that exercise is the best thing for our lungs. Even a little. Good Luck & Take Care----Diane

Re: Exercise

Author: Di (---.in-addr.btopenworld.com)
Date: 09-09-02 05:46

Karen,

I, like many others with sarc, have a mucus problem and I can't breathe easily through my nose - it gets worse at night. Every so often I can't breathe through my nose even just sitting still. Do you have any exercise or other suggestions to counteract this problem?

Di

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 09-09-02 06:25

Di,
Very observant of you - "a mucus problem and I can't breathe easily through my nose"

So many people just say they have 'allergies'

But it is not allergies, it is congestion. Mine went away a few years ago when I discovered the ARB therapy. Actually, it was still a problem whenever I was still using Diovan. Elaine had this congestion problem too. She changed to Avapro, I changed to Benicar (which I think is the best ARB available at the moment). Nasal congestion disappeared for both of us.

These drugs are all regarded as identical by the medical profession -lol
It just goes to show how much we need to learn about 1,25-dihtdroxyvitamin-D, especially its action in the inflammatory diseases like Sarc and RA.

..Trevor..

Re: Exercise

Author: Steve (---.server.ntl.com)
Date: 01-05-03 19:23

Ray

I have been a keen cyclist for the past 10 years or so, covering between 10 and 30 miles per ride on 1 to 3 times per week, until the onset of Sarcoidosis. I noted around 2 years ago I just couldn't keep up with the other guys like I used to. BUT I still go, not as often and not as far but I go at my own pace I don't like the comments I get from my friends but then I haven't told them of my illness, ( I prefer not to), the shortness of breath is the main problem but as far as my body is concerned I do believe I benefit greatly from it with the added bonus of a couple or 3 beers at the end of the evening I sleep like a top. (sleeping at bedtime being a problem for me also -too much stress can't switch off). I have big problems motivating myself to do little else but this really helps and to be honest is the highlight of the week for me. (How sad eh!) Oh! and in case you were wondering I always go in the evening (No sunlight) that was before I even knew about the sunlight thing. Have you tried swimming (indoors), great allround exercise for the whole of the body, I try to go as often as I can
( about 3 times a year lol ) the lumps and bumps on my body seem to keep me away ( I'm very self conscious ) but I do feel refreshed afterwards especially if I can get the pool to myself. I'm hoping to increase my exercise routine this year 2003 in an effort to combat the compulsory falling asleep when ever I sit down routine.

good luck with your running

Steve

Re: Exercise

Author: brendan (---.mcbone.net)
Date: 02-16-04 08:56

Ray,
When I was a teenager I was heavily into martial arts. After college I fell into a pattern of sitting in front of my computer for12 to 15 hours a day working. My entire life was effected by this lack of exercise. I was tired all the time and had body aches.

When I turned 32 I decided I needed some exercise and went on a trip in the mountains. While hiking I realized that I had a very hard time breathing. After my trip I visited a friend who works a hospital, she gave me a chest x-ray but everything was normal.

Four months later I was diagnosed with Sarc stage 1.

At 33 I decided to get back into martial arts. I train 3 times a week for an hour and I am always covered in sweat after the workout. The workouts are harder for me than the younger and healthier people. I have a very hard time with running for example. But the last 2 years of training 3 times a week has helped my body considerably. I am much stronger and my condition is far better than when I started two years ago.

Between the age of 33 and 35 my exercise increased and my body is much stronger but my SARC progressed to stage 2 in spite of the exercise. I do not know if I would be at a higher stage if I had not done the exercise. I can not say that the exercise has helped or hindered the SARC. But my doctor has told me that the exercise is good and I believe her.

I can say that exercise has helped me emotionally and strengthened my body. But exercise has not stopped the progression of my SARC.

Re: Exercise

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 02-16-04 11:27

I joined a Curves type operation in November last year and it has turned out to be the best thing I could have done for my sarc symptoms ( I have it in the lungs and liver and who knows where else at this point!). Curves is a good option for women, as it is done indoors and you can exert as much energy as you feel you can cope with, get strength and cardio conditioning and be home in 45 mins without exposure to the elements and Vit D of the sun. I was always fairly fit before sarc was discovered, but now I know that exercising has to become a way of life for me.

I go three to four times a week and my last lft showed no deterioration. Since exercising for the 30 mins, I have find my breathing really good when I am doing the circuit, my morning stiffness much improved and my overall health much better. I have lost inches, if not weight, and look toned and fit.

My pulm reckons that every sarc patient should exercise as much as he/she can manage for the benefit of their lungs. It's not always easy to get going, but I am determined to keep it up as long as I can. I hope that once I get going with the MP, that will mean until I am an old lady! In the summer, I will supplement this form of exercise with a nightly walk around my neighbourhood with friends. I hope taking an ARB will not lower my BP too much and that I can still exercise as always. That will remain to be seen.

I would definitely say that exercise is beneficial, not only for your wellbeing physically, but also for a positive mental attitude. You just feel so much better all round. I think it is a must and every sarc patient should aim to do whatever is suitable for at least 15 mins five days a week or more.

Re: Exercise

Author: Sally Provo (---.ras.pdx.edu)
Date: 02-16-04 12:12

Just wanted to add my two cents here. I just started running a few weeks ago, and even though I have some aches and pains I'm feeling pretty good. I'm 37 and haven't exercised much since my daughter was born two years ago, so my version of "running" is fairly ludicrous. I run about 200 meters and then walk two hundred. I do about two or three miles total--pushing a baby jogger.

My main sarc symptoms are fever (14 months of fever now) and fatigue---as well as the uveitis, bone pain, etc. I don't have lung symptoms, but I do have a lot of granulomas in my lungs--the pictures look like my bronchial tubes are covered in sesame seeds. My pulmo wonders why I don't cough.

Point of the story--since I've been running/ walking I've had less fever. I've been living on advil for a year, and now I'm skipping doses without feeling like I've been hit by a truck. It is noon and I haven't had an advil. I've walked two miles as well.

I'm still on 4 mg every other day of pred and moving down 1 mg every two weeks. When I go down I feel like crap, but then it balances out. I take minocyline every other day and I'm trying to get some Z on the 23rd when I visit my rheumie. I've never taken Benicar--yet. Doc wouldn't go there. I gave her this website address instead of copying things for her, and she instantly looked for doctors and found Cantwell--and didn't agree with him and fould him qwacky and then stopped. I'm just going to copy some studies for her. She did tell me that the CDC study wasn't in a reputable journal. I don't care if she read it on the bathroom wall--her version of my treatment is NOTHING. Pred, meth, plaquinil. She is working under one of my other docs, the head of the rheumatology dept, the immunology chair, and the head of allergy and cell biology. He also runs the uveitis clinic. He may be BRILLIANT but he isn't open to these new treatments.

I am rambling. Exercise is making me feel better. So is minocycline. I am so much better than I was a year ago. I've been taking mino for six months. I just saw my chiropractor for an adjustment and that made me feel better too.

Take care and get out and walk if you can. Sally

Re: Exercise

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 02-16-04 18:40

Thanks everyone, for extolling the benefits of excercise for sarcoidosis patients as well as the general population. Next to the Marshall Protocol, it is may be the best thing you can do for your sarcoidosis symptoms. No matter where you are in your recovery, doing what you can to maintain or improve your muscle strength and cardiovascular fitness, is very important.

I find that my daily walk is also an excellent opportunity to gauge my progress. I can focus on how I feel doing the exact same thing that I have been doing since I started the Protocol. I look forward to this walk, so I know that when fatigue shortens it or prevents me from taking it, that Herxheimer has struck again. And I can evaluated certain symptoms such as foot numbness, leg muscle strength, back pain, breathing, endurance, etc., under the same conditions to provide a more accurate subjective assessment. When I think back to how I felt a year ago, I have to

Meg

Re: Exercise

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 02-17-04 03:50

I'd like to add my recent experience to the list.

For many months my fatigue has caused me to spend most of my days sitting feeling miserable and dosing off to sleep trying to catch up, which never seems to happen. It's funny how the body and mind react to Sarcoidosis, no matter how long we have it or how much we learn, we still think getting a bit more sleep will give us some more energy. It's recently dawned on me that it doesn't.

After Xmas 2003 I found through taking steroids over the past 6 months I had put on a whole stone in weight making me exactly the same amount overweight. I wasn't happy as I'm sure everyone can understand. I immediately thought no more steroids and for other reasons Trevor would endorse I managed to get off them within a few weeks. Although I had little energy at this time I decided to take up some form of exercise in addition to my once a week night time bike rides. I already had an exercise bike (which I never used) and I borrowed a rowing machine from my parents. Slowly but surely day by day I have been able to increase the time I spend from around ten minutes per day to almost an hour as of yesterday, and my energy levels have increased particularly while exercising. I am still feeling tired possibly due to insomnia but due to my daily exercising I am able to focus on something positive everyday. As I have already said my energy levels have increased and my lung capasity seems to be better, my shortness of breath seems to have gone, plus I have lost half of the weight gained in the past six months in just over a month. I must point out that this is also in conjunction with watching my diet even closer which must also result in an even lower level of VitD. I am eating well below 2500 calories per day no dairy products and actually feel better for it.

I realise some sufferers are not fortunate enough to do this much if anything but I'm sure any type of exercise no matter how small will help
as a couch potato myself for the past 2 years I can highly recommend it.

good luck everyone

Steve

Re: Exercise

Author: Michael (---.server.ntli.net)
Date: 04-02-04 06:32

Exercise! Is it worth the effort, when suffering from a debilitating disease such as Sarcoidosis? You decide after reading the results of my recent attempt to achieve a reasonable level of fitness.
I was diagnosed with Sarcoidosis 15 years ago. At the time I was a Second Dan Karate instructor training four times a week and also went running, swimming and cycling practically every week. Needless to say I enjoyed a very high level of fitness. My health started to deteriorate within months and gradually had to give up some of my more strenuous activities. Karate was the first to go, a momentary lapse in concentration could lead to serious injury. Then the running, my feet and knees started to hurt. I developed osteoporosis, rheumatoid arthritis and cataracts as a result of taking steroids and anti cancer drugs. I managed to maintain a reasonable level of fitness with swimming and walking, until twelve months ago. I then had three lengthy periods of convalescence following a prostate and two cataract operations. I was alarmed at how rapidly I deteriorated. Suddenly I could hardly walk up and down the stairs. I suffered from numbness and tingling in both arms and intense shoulder pain. A full kettle of water was no longer easy to lift. One hundred press-ups was no problem at one time now my right arm collapsed trying to do one. My resting pulse rate moved from the fifties to the seventies. My cholesterol and triglicerides were high enough to alarm the Doc. My waistline was expanding; none of my trousers would fasten. I was lounging about most of the time in tracksuit bottoms feeling sorry for myself.
I began to wonder whether any of this was reversible and decided to embark on a cautious exercise programme. Fortunately the necessary exercise equipment was lying unused in a spare bedroom. My first priority was a cardiovascular exercise to improve my stamina and lower my pulse rate. I chose an exercise cycle for this setting the tension so that I could cycle for thirty minutes non-stop. To relieve the boredom I set up a spare television to watch whilst exercising and timed it to coincide with a programme that would hold my attention. The most difficult part was actually starting to exercise. The mental fog and apathy that undermines your resolve and resists any form of physical activity disappears after five minutes of pedaling. Maybe it�s the freshly oxygenated blood pumping round the body but the effect was noticeable.
After four weeks I noticed some improvement in my condition then I got the O.K. to go swimming again after a three-month lay off. My target was to swim one mile of crawl with out stopping with no time goal. I achieved this in just under one hour but was unable to sleep that night because of the pain in my shoulders and arms. I decided to add additional exercises to my programme starting with sit-ups then bench presses, lateral pulls, standing squats and spring handgrips. Where weights were involved I was particularly careful to use weights that I could easily handle and phased the exercises in gradually as I did not want to train to exhaustion.
I started my exercise programme eleven weeks ago and my current schedule is as follows: -
1.Exercise cycle 30 minutes (aim to achieve pulse rate of 120+)
2. Hand grips 200 each hand
3.Bench press 3sets 10/ 80lbs
4.Lateral pulls 3 sets 15/ 90lbs
5. Standing squats 30
6. Sit ups 75
Swimming 3 times per week 1 mile in 40 minutes (do not swim on same day as other exercises too tiring)

The results to date: -
Taken my belt in three notches and can fasten my trousers without difficulty; no problem going up and down stairs; resting pulse rate down to 52; can do 10 press ups without collapsing; general aches and pains still there but very much reduced; mental alertness improved; muscle tone improved; swimming times improved.
Is it worth the effort? Well I think so you see I am in my seventieth year and was beginning to think I was to old to exercise so naturally I am quite pleased with myself. The next step is to buy a mountain bike and enjoy some exercise outdoors. Hope my experience encourages others to follow suit.
Mike on his bike

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 04-02-04 06:42

Mike,
No, your next step should be to get on the protocol and throw off this deadly disease for ever. If exercise alone could cure this disease there would be a heck of a lot of recovered patients out there...

Have your triglycerides gone back to normal yet?

..Trevor..

Re: Exercise

Author: Michael (---.cvx2-a.man.dial.ntli.net)
Date: 04-02-04 11:32

Thanks for your advice Trevor but I live in the U.K. and my Doc will not prescribe Minocycline and Benicar. Managed to persuade him to let me try Doxycycline and Diovan which cleared up my Uveitis but thats as far as he is prepared to go. I appreciate exercise will not cure Sarcoidosis but it has improved my quality of life. At the rate my health was deteriorating my independence would soon have been at risk. We in the U.K. have to do the best we can under difficult circumstances. The speed at which the medical profession moves here I don't think your protocol will be accepted by the NHS in my life time. I have joined John Shackcloth's group for the promotion of antibiotic therapy but at this stage consider it will be very difficult to make any impression on the bureaucrats that run our our health service. Some of their decisions beggar belief. We have to keep on trying and I know you wish us luck.
Regards Mike

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 04-02-04 11:39

Ok Mike,
I will help John's group in any way I can
..Trevor..

Re: Exercise

Author: Pippit (---.aep.bellsouth.net)
Date: 04-02-04 20:59

Mike,

It seems that if your doctor will prescribe Doxycycline and Diovan he would eventually agree to Minicycline and Benicar. Keep working on him.

It is good that you've lost weight and are more physically fit again, but please don't over-do it. Sarcoidosis has a strange and unpredictable course and chances are it slowed down coincidentally to your exercising. Too much exercise can throw you into more inflammation, especially if you're not yet on the protocol. You're demanding alot of your body when you're trying to function with bacteria working against you. If I do too much walking or run hard I find that I feel terrible later that day or the next, so I have had to learn what my limits are and respect them. Outdoor activities can really do you in, even for short periods because of the Vitamin D generated by the sunlight absorbed through your skin and your eyes.

I'm currently going back to college and have found that even the time I spend walking around the campus from building to building to and from classes will increase my inflammation. I wear sunglasses and long sleeves and pants, but even so. the amount of time I am outdoors, and the increased activity level does make it more difficult for me to recover. My financial situation makes it imperative that I go back and get my degree but I do not go outdoors any more than I absolutely have to. I swim sometimes in an indoor pool but don't exercise outside at all.

Stick with the efforts of the UK group and see what headway you can make through those avenues as well as your individual efforts in convincing your doctor. Somebody else in that group may also have suggestions as to how to get your doctor to try this. It is frustrating to deal with a system that is not listening to your needs but just make up your mind that you will be as persistant as the doctors are resistant, and don't let discouragement dampen your assertiveness in insisting on what you need. If you see an opportunity, take it, even if you are worried that it will take time. Sometimes life surprises you and an angle you think is a long-shot has great results.

It might be helpful to ask your doctor exactly what he's afraid will happen. Once that is established then you will have an idea about how to overcome his objections.

Let us know the nature of his reluctance and maybe we can help. Remember also, that your doctor can call Trevor and speak with him directly.

Keep on the path

Pippit

Re: Exercise

Author: Cindy (---.cvx9-bradley.dialup.earthlink.net)
Date: 04-21-04 10:15

I use to walk on a tread mill for a half hour a day, at the rate of 3.3, one morning I could not walk on it due to I could not breathe, then my knees ached so bad every step was painful. I am hoping someday I can get back on the treadmill and beging to walk . Any sugestions on what I can do inside to get some kind of exercise?
Cindy

Re: Exercise

Author: kevan (---.pacificinsight.com)
Date: 04-21-04 11:45

Hi All

I to used to exercise a great deal.. 4 years ago before my sarc got really bad I could run for 22km and then go biking because I wasn�t tired. I loved exercising but it was almost all out doors. Being outdoors in the mountains is my passion and I moved from England to the Canadian mountains to pursue my passion of outdoor activates. The last couple of years I persisted with my running and biking through determination only but my times slowed and the weight I lifted reduced and the efforts I put out were greater. Eventually I decided to give it up on a regular basis and only run/bike when I felt up to it and so could enjoy it. I no longer wanted to run and feel ill form sarc. So now when I do run which is about once every 12 weeks I usually enjoy it. It uplifts my mood tremendously. My sarc has improved tremendously in the last 6 months but I still cannot run regularly. Reading this thread I think I might benefit from a tread mill indoors. Perhaps running outside for a few consecutive days when I could made me feel ill for some time after and resulted in me having to stop running again.
This thread has made me think.
Kind regards to all.

kev

Re: Exercise

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-21-04 12:01

Kev,

Maybe you would find brisk walking just before daylight or dusk enjoyable. I walk in a hilly area. The hills are a nice challenge and keep it from being monotonous. Walking doesn't cost anything, and there's no significant equipment cost involved. I walk with hand weights.

Belinda

Re: Exercise

Author: kevan (---.pacificinsight.com)
Date: 04-22-04 08:10

Belinda
Yes..that is a good idea. I dont think i am really up to running. i love to run but i still cannot and i dont like the disappointment and depression that follows when i realize that sarc is still debilitating me. I often find walking regularly too much as fatuige is still a big factor but it is nearer my level. And there is no shortage of hills here. However. to keep things in context. I have made huge improvements on the MP but I still cannot work out or even take the dog for a walk regularly. I just realy miss the thrill and mental elation from running. One day i believe it will all come back.

Kind regards

Kev

Re: Exercise

Author: Tony Dolan (---.dsl.esat.net)
Date: 05-11-04 09:38

I am a great believer in exercise and after coming off prednisone in May 03 I planned to swim a lot on holidays to get fit and try lose some weight. However, the effects of being out for hours in the full Mediterranean sun took their toll and despite doing a lot of exercise I went downhill quickly.

By a very good chance Meg from this forum contacted me telling me of its existence. As I was at the point where I wasn't able to work properly I visited my GP and told him that I wanted to go on the Marshall Protocol as it existed then (ARB - Diovan, antibiotic - minocin) and started in August ( I started on the Diovan 2.5 months before starting the Minocin).

Fairly slowly I have built up my fitness again and in particular the ARB seems to give some protection against the sun as I mainly exercise outside. At midday I usually feel tired so I walk a mile to a local mall have a coffee and walk back feeling energised and ready to work. I do a full workout on the weekend. At the start my joints were so stiff I found it difficult to put on my socks but after exercising everything always loosened out and despite getting hit with tiredness after a full workout the trend is generally upwards. In particular before I was diagnosed in 2001 I had been complaining for a couple of years about pains in my leg bones, when I used to run. The condition of my bones, subjectively anyway, has improved considerably.

So exercise is great, the treatment is great but limiting one's exposure to sunlight is problematic. If I start only venturing out at night I suspect the neighbours are going to start hanging garlic on their front doors.

kind regards,

tony dolan

Re: Exercise

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 05-11-04 11:14

Tony,

Controlling all sources of vitamin D is going to remain a critical part of the Marshall Protocol. Yes, it may be problematic, but on the other hand, it never made any difference how much I pushed myself to work with pain and stiffness, it simply was impossible to exercise until I reduced my serum 1,25-D so I could move my joints again.

By keeping my 25-D below normal for several months, I was able to keep my 1,25-D down to a normal level. Eventually I recovered enough to have the energy, stamina and flexibility to exercise. It does take more discipline to take a walk either early in the morning or late evening to avoid the full effects of sunlight.

Belinda

Re: Exercise

Author: Louis Doyle (---.dsl.pipex.com)
Date: 06-25-04 03:32

Hi folks

Thought I'd add my two penneth on the subject of exercise.

I gave up my running and other intensive cardiovascular sports a year ago because I had noticed a clear link with my sarc symptoms: fatigue, sore eyes and foggy thinking. It was the exercise doing it not the sunshine.

The ironic thing was that sport was one of the few activities my symptoms allowed me to enjoy. And like most people these days it is ground into me that exercise is always a good thing. Giving it up was very hard

Nevertheless I did managed to restrain myself and limit myself to walking and gardening for the last nine months. I have enjoyed a distinct improvement.

So if you are exercising a lot and feeling lousy I would suggest trying giving yourself a fortnight off and see the difference. Even the pros take time off.

I recently decided to test my theory the other way round by going back to some more vigorous exercise. And at the same time I hoped to see if the mino therapy I have been on has changed things.

I went running again felt great for a day or so, ran again a few days later and then boom found my symptoms had suddenly worsened. Lots of fog, lots of cold sweaty nights.

It's a real irritation and disappointment to me to discover that the kind of hard exercise I enjoy is off limits. I'm going to carefully experiment and try and find a level at exactly which I can exercise without too much discomfort.

I'd be very interested to swap notes with others sensitive to overdoing it.

Louis

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 06-25-04 03:38

Louis,
Most Sarcoidosis patients typically can't tolerate epinephrine or nor-epinephrine 9commonly called adrenaline). They can't tolerate it in local anesthetics, for example, where it negates the action of the anesthetic.

If you are working up your body's adrenaline level during exercise it really is little surprise (to me) that you are feeling worse.

..Trevor..

Re: Exercise

Author: Louis Doyle (---.dsl.pipex.com)
Date: 06-25-04 04:54

Thanks Trevor

Good to hear a plausible chemical explanation for it.

I hope there's a way to use this knowledge it to figure our a way to get the benefits of exercise without the problems. As I understand it exercise induces a short term adrenaline peak and then a medium term lowering.

This profile certainly fits with my personal experience: After a couple of days of taking vigorous exercise I tend to feel strangely happier and more relaxed, but also have this horrible feeling of recovering from an accute 'poisoning'.

I'm wondering how best to get the good adrenaline lowering bit without so much of the nasty the peak? Taking it a bit easier is obviously part of it, but there have to be other ideas. It I guess certain exercises are better than others, and relaxation and breathing techniques probably also help.

Ideas most welcome. I guess the answer it has to be buried somewhere in the enormous piles sports science literature out there.

Louis

Re: Exercise

Author: Louis Doyle (---.dsl.pipex.com)
Date: 06-25-04 05:13

Sorry to hog the topic, but I thought it might help to expand a little on the state exercise puts me into to see if others have the same.

It's a mental 'fog', but it's a generally pleasant feeling. It's almost feel like I'm a bit drunk. But the curious side effects are I find myself pouring tea on my cornflakes; putting bread rather than the milk back in the fridge and missing crucial words out of sentences.

I guess it's a vitamin-d plus an endorphin thing?

Louis

Re: Exercise

Author: Louis Doyle (---.dsl.pipex.com)
Date: 06-25-04 06:07

I've had a scout around but not come up with an awful lot so far on cutting exercise-induced adrenaline levels.

But did find this, which recommends a thorough 'warm down':
http://www.pfitzinger.com/labreports/cooldown.shtml

Please bear in mind it is aimed at the superfit marathon runner! The warmdown he suggests is as long as my entire session.

Scaling it down to mere-mortal terms, I think a bit of a walk, a whirling of the arms and a stretch would be a good start.

Also, by-the-by, it seems that caffeine cranks up the adrenaline levels, as does your mental attitude.

Attempting to chill out
Louis

Re: Exercise

Author: Chris W (---.ndr.de)
Date: 06-29-04 09:04

Michaels efforts were the subject that resonated most with me . I've been under treatment for 17 of the last 20 years during which I've kept up a daily run , used to be around 8 miles now down to 4 , plus some swimming cycling & wieghts . All of which certainly helps my sense of wellbeing but after all the steroids I've taken it's getting harder . I saw my specialist on Monday and mentioned antibiotic treatment but his view is that the research has not been subject to peer review , I 'm glad to put my support into any campaign to get this new treatment tried in the UK , who do I contact ?

Re: Exercise

Author: Admin (---.vnnyca.adelphia.net)
Date: 06-29-04 09:29

Chris,
Research not subject to peer-review? What a joke! Just about every pulmonologist in the world has spent the last 2 years trying to pull apart what we have done. Our papers have been accepted by an eminent group of peer-reviewers, one of whom comes to mind as:

Dr Evelin G Lindner MD (Hamburg), PhD (Hamburg), PhD (Oslo) who teaches at Oslo, Trontheim, Paris Maison Des Hommes, and Columbia USA Universities.

But maybe your specialist feels Dr Lindner is not sufficiently qualified

..Trevor..

ps: Any physician can post their peer-review comments for those papers we have published at JOIMR. If your specialist feels that our research is somehow lacking then I would urge him to post a review explaining the problem so that we can try to fix it. For example, at
http://www.joimr.org/phorum/read.php?f=2&i=38&t=38
(health Professionals only are allowed to post at JOIMR, please)

Re: Exercise

Author: John Dresser (---.csr-wy.client.bresnan.net)
Date: 06-29-04 09:37

Louis,
Regarding caffeine effects......... Last February, I routinely drove from 4000 ft asl to 8000 feet, sipping on strong coffee all the way, to go for an XC ski workout on weekends. I would experience heart arrhythmia symptoms as soon as I exerted myself at altitude.

This motivated me to get the D blood tests to see if I might still have Sarc.
I also suspected the caffeine connection, so I weaned myself off caffeine before the next skiing workout. I have had no arrhythmia sensations since. At that time I was feeling quite fit for a 52 year old with a 20 year sarc history. However, blood tests showed high D levels.

I then started the MP (I am about 4 months into it) and now have all I can do to walk for an hour or so every evening. It varies depending on where I am in the weekly cycle. I feel quite good some days. But often, I feel I have very little energy or endurance, and the legs can get quite wobbly. However, the trend in recent weeks is slight improvement, feeling a little stronger, less dizzy, less sleepy. Still lots of achy joints, and eyes burn a little more, and that is a symptom I never had until starting the MP.

John Dresser

Re: Exercise

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 06-29-04 15:39

Chris,

Welcome to SarcInfo. Most of us have also had our specialists refuse to veer from the standard treatments. Perhaps if you asked your family doctor, or Primary Care Provider, you might be successful.

Meg

Re: Exercise

Author: Louis Doyle (---.access.clara.net)
Date: 07-04-04 09:03

Interesting to hear your experiences with caffeine. I've not had anything quite so dramatic, but I think I'll try and lay off it all the same.

I've been experimenting with a more moderate running regime and with being very thorough in warmng up and down. I set a timer to ensure I spend 10 minutes warming up and 20 warming down.

I've enjoyed an enormous improvement. I'd recommend anyone who feels crummy after exercise give it a go. It's only what the sports training textbooks say you're supposed to do anyway.

Louis

Re: Exercise

Author: Paula Bakley (---.proxy.aol.com)
Date: 07-06-04 16:31

I read many of the letter of those asking aobut exercise. I have always been hyper and couldn't sit down. The thought of execise is not in my vocaulary. I don't sleep all day, but Ican't exercise. Maybe I have been on steropids too long. I keep active, but am thrilled when I can see straight enough to drive. Only been on the benicarfour days so I am not looking for excercise, but is there any suggestion for someone who is so weak, but can't sleep. I do whatI need to, but everything is an effort. Today I can bearly move my fingers. I don't know if it is nerves being effected by the Neurosarcoid oram I getting lazy. I don't think so/ Insomnia makes me crazy. Well anything to give me some pep woulc be greatful.
Paula

Re: Exercise

Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date: 07-06-04 16:40

Since starting the Benicar almost two weeks ago, I have been so dizzy and wiped out, that I have had to give up on my gym class, something which made me feel good and I really enjoyed.

At the moment, the only exercise I am getting is walking up and down my stairs to go and have a lie down. It is most depressing and I can almost feel the muscles I have built up, melting away.

Living in a spinning blur is not much fun right now....

Re: Exercise

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 07-06-04 16:55

Paula and Kas,

Try to keep things in perspective and realize the priority of treating sarcoidosis. Are cancer patients in chemotherapy encouraged to exercise? Of course not -- because their first priority is treating the disease! I felt the same priority in following the MP in treating sarcoidosis.

The energy and enthusiasm for tackling exercise came after many months, so don't become disheartened. I had lost most of my strength and muscles from being ill from sarcoidosis for so long. After a year and a half following the full MP, I am now walking 2.5 to 3 miles each and every day. Now I have trouble recognizing "me" in the mirror because of my renewed energy, the fact that my eyes have a sparkle now, instead of looking dull, and my body looks better than it has in decades.

There is a time for everything. There will be a time for exercise.

Belinda

Re: Exercise

Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date: 07-08-04 14:01

Thanks, Belinda, I sure hope so.

What I need to know now, is how long I should be so dizzy for. I have been on Benicar for 15 days now, and if I go on like this, will I ever be able to go onto the mino?

Thyroid and glucose levels are normal, Trevor.

Re: Exercise

Author: Amber Jean (---.aus.amer.dell.com)
Date: 07-12-04 06:10

I have been taking my mom to a spa called Premier Lady and they have an indoor pool and steam room .. my mom is overwieght which makes breathing harder for her on top on the sarc on her lungs. But in the spa they allow her to take her hoverround (electric chair )in the spa and even though she is on 24/7 oxygen, we have to take care of her portable oxygen tank (we just leave it on the back of her chair) ... we have a 30 foot line( cannula) so there is plenty of room for her to get in the pool to get some exercise in. She also sits in the wet sauna and breaths the eucalyptus in the steam...she said it has done wonders for her energy level and breathing ...as she has greater range of motion and feels weightless in the pool. Its also heated and indoors.

Re: Exercise

Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date: 07-12-04 09:56

I went to Curves today, with my doc's blessing. She told me just to do a light workout, which I did. I managed and felt much better afterwards, as my BP went up to 98/52, which is my best to date on the Benicar. I am going to try and keep this up 3 times a week.

I see people at the gym who a battling breast cancer, and if they are encouraged to try mild exercise, I feel that it can only be beneficial. Of course, I will only do it when I am up to it, but even with sarc, I want to carry on with my life as best, and keeping up a level of fitness keeps me otherwise well and energised.

Although I still have bouts of extreme dizziness when my BP drops to real lows, I think I am winning here, as I am also having times when I feel not bad at all. One more week, and I hope to start on the mino.

Re: Exercise/Kas

Author: Martha (---.proxy.aol.com)
Date: 07-12-04 12:30

Kas,

I don't have sarcoidosis, but just as nasty a disease-scleroderma. I went on minocin 2 1/2 years ago and 2 months into the AP, I couldn't even move my head a little bit or I'd spin out of control (in my head) and throw up. Never had vertigo before-ever. It was so bad that my husband took me to the ER...of course there was very little they could actually do other than give me an antihistamine which did nothing.

I struggled with it for a month until I forced myself to get on my exercise bike and work up my bp and get that blood perfusing to my brain!!!! Miraculously, it worked wonderfully. As long as I'd get on that stationary bike for 1/2 hour, my vertigo was no more. Then finally, the vertigo went away completely. My vertigo wasn't related to my BP (it was the minocin-it's a side effect when beginning) but nonetheless, I couldn't function-AT ALL.

You might give it a try-I don't think it'd hurt you. I also found the ginger capsules were a wonderful help with the dizziness...

Hope you feel better, Martha

Re: Exercise

Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date: 07-12-04 14:43

Thanks a lot Martha for your help here.

Today has been the best day I have had so far on the Benicar, not perfect, but much better, and I do attribute it to that bit of early morning exercise. It clearly raised my very low BP a bit and made me feel much better. I think I will keep this up as much as I can.

I will buy some ginger caps too.

Re: Exercise

Author: Diana (---.cache.pol.co.uk)
Date: 10-04-04 06:03

The one exercise I have managed to keep up, over the 25 years since my legs packed up, is swimming. Except for during the 11 months when my heart was misbehaving to the extent that blackout/wooziness made it unwise, I have swum (in indoor pools) regularly. Sometimes when I am first put it the water I get shortness of breath, and cough, but once into my stride I can swim a reasonable distance on my back, with a double-armed backstroke. What concerns me at the moment is that on the last two occasions I have fairly suddenly become rather disorientated and felt faint. It may simply be that my blood pressure has suddenly plummeted, although I don't know why it should. Any ideas of what else it could be? I am supposed to be going in 4 hours time, but am a bit scared even though I have someone swimming with me. My session is from about 6.45pm - 7.15pm. Next 40mg Olmetec afterwards will be due at 8.15pm (4 per day), Minocycline level in general 50mg or 75 mg every other day, according to what I can cope with (last dose 50mg on Sat night).

Diana

Re: Exercise

Author: Diana (---.cache.pol.co.uk)
Date: 10-05-04 03:49

Further to my email above (and not having had a reply), I decided not to swim last night. I wasn't feeling too brilliant, and my BP was 71/46 (pulse 97) about half an hour before I was due to leave. I'd still be grateful for your thoughts though. There is always next Monday...

Diana

Re: Exercise

Author: Lottie (---.proxy.aol.com)
Date: 10-05-04 20:13

Diana,

I'm sorry we didn't get to your post before your swim session yesterday. I think you made the right choice.
Diana,

I'm sorry we didn't get to your post before your swim session yesterday. I think you made the right choice.

Your blood pressure may be going down as a result of your disease. And, as the bugs die, remember they are releasing more of the same poisons that have been part of the reason that you have felt bad in the past.

I know that Trevor is more concerned with us getting rid of the bugs and getting better than he is about us getting exercise. We�ll be able to exercise when we�ve defeated the bugs.

It sounds as though you�ve reached a point in your treatment that you need to concentrate on the MP, and not go to the swimmng sessions until you are feeling much stronger. And, that may be when you've gone through most of the MP, as a herx could occur at any time, and in the pool would not be a good place to be.

From your description of how you feel in the pool lately, if I were feeling that way, I wouldn�t go myself. It could be very dangerous, I think you understand that.

Lottie

Re: Exercise

Author: Tom Rogers (---.twcny.rr.com)
Date: 12-05-04 10:15

My sarcoidosis is mild (ie: no noticable symptoms, etc) but I am still on the MP. I am wondering if there has been any trouble with lifting weights while on the MP - particularly the Benicar 3x day.

I am determined to begin bodybuilding weight training again, but I want to make sure it will be ok with the MP.

Thanx,

-Tom

Re: Exercise

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 12-05-04 10:30

Tom,
Tom,
Any exercise is encouraged to your ability to do so. Exercise is good for cardiovascular health and mental outlook. If you have been away from it for awhile, start slow and don't overdo, listen to your body.

What Phase of the MP are you in? A signature line would be helpful for the Moderators to keep track of your progress.
Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34

Re: Exercise

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 12-05-04 13:50

Tom,

Body building and weight training sounds pretty strenuous. Trevor spoke with a doctor recently who cited a study indicating that cortisol is increased (think runner's high) during strenuous exercise and acts as an immunosuppressant. That would meant less bacterial killing.

It's tempting to think that if you can improve your endurance and strength that you will be well. Real well-being, though, will depend on eradicating all the pleomorphic bacteria that trigger your sarcoidosis inflammation.

I suggest that you find a moderate fitness activity indoors that you enjoy.

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: Exercise

Author: napamac (---.dsl.pltn13.pacbell.net)
Date: 08-05-05 08:55

Hi All . . .

Has anyone found a specific program for "breathing" ?
I have tried to find an Eastern system on the net but no luck yet.

When I help my wife in the garden digging out roots or moving shrubs I
have to stop and take deep breathes because I get dizzy.

Also, has anyone been contacted by FSR? And any thoughts about the organization? I keep getting e-mails from them . . .

Doing well on PH III . . .

Rick in Napa

Re: Exercise

Author: DNStog (---.asm.bellsouth.net)
Date: 08-07-05 16:17

Rick,
About two months ago, I also received an amail from FSR (first in approximatley two years after listing on their site) and responded by asking them to remove me from their mailing list. Along with my response to them was a brief synopsis of how I was getting well on the Marshall Protocol. Their response to me was a page long advising me of places to find research on Sarcoidosis...sites I had already checked two years earlier which offered nothing new. The following is their paragraph to me regarding MP without naming it.

In regards to your comments, the FSR Scientific Advisory Board does not endorse experimental treatments and we are unable to make recommendations regarding therapy for individual patients. Traditional medications prescribed for sarcoidosis are listed on the 'Treatment' page of our Web site - http://www.stopsarcoidosis.org/sarcoidosis/treatment.htm. We will certainly forward your comments to our Scientific Advisory Board for further review.

"None are too blind than those who refuse to see."

Donna - Phase II and feeling better with each day

sarc dx 95, MP 12/27/05

Re: Exercise

Author: napamac (---.dsl.pltn13.pacbell.net)
Date: 08-08-05 20:25

Hi Donna,

That's exactly the response I got when I mentioned MP.
And . . . Your quote is quite befitting there.

Best to you . . .

Rick in Napa

Re: Exercise

Author: martin fennell (---.bas504.dsl.esat.net)
Date: 08-16-05 05:30

I find exercise (running/jogging) to be a big benefit. But to anyone who is thinking of taking it up, i would say start off slowly.

Re: Exercise

Author: Meg (---.dhcp.eucl.wi.charter.com)
Date: 08-16-05 06:32

Martin,

Exercise may maintain some muscle strength and endurance but it will do nothing to help you recover from sarcoidosis. Please see:

Are there any Guidelines on Exercise & the MP?

Best,

Meg

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Historical perspective on Sarcoidosis:

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

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