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 The material here provides useful background, but much of it is now out-of-date.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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Anyone have Asthma & Sarcoidosis?

Author: tom (---.client.attbi.com)
Date: 07-06-02 17:38

I am just curious if anyone that has been diagnosed with sarcoidosis has also been diagnosed with asthma? I am trying to figure out why I continue to show increased obstruction on PFT, but stable fibrosis. I have significant (20%) improvement in fef25-75 with bronchodilators, 10% increase in FEV1. As my pfts continue getting worse, my response to brochodilators gets better but not by as much.

Any comments?

Tom

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-06-02 17:59

Tom,
Asthma is nothing like sarcoidosis. Sarc is an inflammatory condition which affects the interstitial tissue, while asthma is obstruction and constriction of the upper airways.

Doctors become confused because they have not realized that the high levels of 1,25-dihydroxyvitamin-d in Sarc affects the brain's ability to control muscles, including the airways muscles. Most doctors do not even realize why there is high level of 1,25-dihydroxyvitamin-d in Sarc patients, let alone what to do about it.

Corticosteroid treatment can weaken the chest muscles and exacerbate asthma. Some of the research confirming this is described in this paper. Have you been using prednisone or steroid inhalers?

Statins (an anti-cholesterol drug) often weaken the chest muscles. Click here to find out more about this.

Anyway, there is plenty of information here at SarcInfo.com to help you figure it out.
Keep smiling,
..Trevor..

Re: Anyone have Asthma & Sarcoidosis?

Author: tom (---.client.attbi.com)
Date: 07-06-02 21:01

I have had continual decline in pft for 3 years almost and only used prednisone recently, declining low doses starting at 20mg for 3 months to see if it would resolve cough.

Tom

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-07-02 13:21

Hmmm,
I assume you have taken antibiotics and done all the other things that might stop the slippage in your PFTs?

A comment on fibrosis: if your assessment of "stable fibrosis" is based on chest X-Rays then that is a pretty imperfect measure. There are PFTs, such as the Carbon Monoxide Diffusing capacity, that will give you a better measure of loss of interstitial tissue to the fibrosing collagen.

..Trevor..

Re: Anyone have Asthma & Sarcoidosis?

Author: Marilyn Greene (---.lynnet.com)
Date: 07-07-02 18:08

Yes, I have an asthma diagnosis, originally diagnosed at about 13 y.o., but after about 20 y.o., only had some symptoms with very cold weather ( on exertion) or following colds/flu (as in a bit of labored breathing to or bit of wheeziness, but no real asthma attacks).

At about age 40 (or 1983-4 approx.), coughing began to last longer and longer following each cold/flu until by approx. 1995, I was coughing day in and day out - the doctor, one of the times I was coughing in the waiting room, said he knew what to do, that that cough was from asthma - was put on antihistamine (Zyrtec is what was finally settled on over time), and Serevent inhaler (this made a HUGE difference and stopped my coughing), and, when it became available, Singulair was added..........oh, and Duratuss (especially aids colds and any allergy bouts) has also made a huge difference (began it in the mid-90s approx.)

With the sarc, pre-diagnosis (fall, 2001), a cough had begun and gradually worsened with other symptoms through winter and into maybe March, when it had begun to resolve (though it may be starting up again this week with 4 days of 90+ weather and LOTS OF SUNSHINE, which I avoided, but even through car windows and rushing from car to workplace, one cannot entirely avoid all sun).

March, 2002, my PFTs/spirometry were fine, as in over 100% for my age/size/weight - I attribute this to carrying wood to my woodburning stove and having stairs in the house! However, the thoracic surgeon, when he told me that my bronchoscopy was fine (done during the sampling of my chest lymph nodes), added that lots of people who even have pretty bad asthma can have a good bronchoscopy!

Don't know if this really helps you, but hope it does.
It certainly makes me wonder if allergies and asthma, etc. are early signs that sarc can develop or if it is just another unknown coincidence.

Marilyn

Re: Anyone have Asthma & Sarcoidosis?

Author: Marilyn Greene (---.lynnet.com)
Date: 07-07-02 18:13

By the way, have you tried deep breathing and other breathing exercises?

I tried some (a la Andrew Weil, M.D., cd on breathing), and find it is helpful to practice - am not a devotee, but do do them on and off during the week, and it certainly is not doing any harm.........even when my breathing was really bad due to sarc (felt like I was hardly getting any air), it certainly made me relax a little bit and felt like I was doing SOMETHING that might help.

Marilyn

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-08-02 12:41

Marilyn,
Corticosteroid injections do save lives.
Prednisone is good for very short term (one or two day) reduction of inflammation. It can drop ACE values from 60 to 17, presumably indicating a lower level of inflammation, so it maybe has its uses. It has no effect on PFTs, paresthetic pain or neuropathy, however, because it does not suppress the 1,25-dihydroxyvitamin-D generation in the granuloma as much as it suppresses their generation of inflammatory cytokines.

It is widely prescribed for asthma, heaven knows why, asthma is so easily managed with safer drugs...

..Trevor..

Re: Anyone have Asthma & Sarcoidosis?

Author: dusty (---.proxy.aol.com)
Date: 07-28-02 08:04

hi all
new to this site--thanx shel.....my husband was diagnosed in 1985...he had a bad ache in his back-when they did an xray, they said it was lymphoma-we were devastated...on the return visit, they mentioned sarcoid..never heard of it----my brother who is a respiratory therapist knew alot about it, and said that steroids would help-that sometimes a person goes a long time with no symptoms.....a few yrs ago, my husband developed a bad case of asthma...he now has emphysema..is not a smoker...he coughs so bad. last sept, he was let go from his job because his symptoms got so bad. i went on another aol site to read up on sarc...and i never knew that alot of people have the same symptoms....the aches-numbness of the face....we thought he had a stroke at one point--he's 58....he goes to the VA for treatment--good thing cause in this great country, we cannot get medical.....every time, they keep changing a diagnosis---now, it's chronic bronchitis......they say he coughs because the inhalers promote that??? to loosen the mucus??? wish i still talked to my brother! one year, he came in from cutting wood, and his eye looked scratched. he thought he hit it with a branch. come to find out, it was the sarcoid....the dr gave him drops....on his next visit, the dr said that the sarcoid was gone?? yeah, for maybe 2 months...how can a dr say that??
he has had to apply for disability----that was months ago....they said he had 6 things wrong with him....once, i overheard the va nurse say asbestos...they keep making him go back for xrays.....how much longer does this poor guy have to wait?? i am seriously thinking of a lawyer, even tho i classify them with doctors....wood stoves do not help either i suppose.....sorry for venting...... from nys

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-28-02 09:01

Dusty,
Last things first. Sarc patients often think they are sensitive to smoke and smells, but they really are not. Their olefactory sense (smell) is made more acute by the upset 1,25DihydroxyvitaminD metabolism. Your husband probably dislikes wood stoves, but I doubt that they affect his disease state. I think this is an old wives tale, from the days when everybody was trying to explain the clustering of Sarc in the SouthEast USA. Now we know it is most probably the higher concentrations of ticks in the wilderness there...

Asbestosis is very easily picked up by microscopic examination of a biopsy sample. But I would suggest that you do not necessarily want your Docs to exclude Asbestosis until later, suspicion of it could help him get disability. What were the 6 things they said were wrong with him in the disability documents?

You didn't mention how long he was using steroids, or at what dose. What other drugs has he been prescibed over the years? It is necessary to know that before commenting on any of the more recent symptoms. For example, the progression to Asthma often involves side effects of high-dose steroids.

Don't apologise for venting. It must be devastating to have a loved one who has suffered so. Your venting is welcome here.

..Trevor..
ps: If you click on the bold text in this message you will find they are links to take you to other, relevant, web pages

Re: Anyone have Asthma & Sarcoidosis?

Author: Mildred Rutledge (---.waf-dc-1-71.rasserver.net)
Date: 07-28-02 22:40

I have been diagnosed with Sarcoidosis and Asthma and I am having a very difficult time with it. Especially on the job. No one seems to understand the daily pain and frustrations I feel from this disease and I am in a very severe state of depression and can't seem to shake it. I have a wonderful doctor and was just recently place on the list for a lung transplant and could really use some understanding from other sarcoidosis suffers. Any comments are welcomed.

Re: Anyone have Asthma & Sarcoidosis?

Author: Mike (208.61.228.---)
Date: 08-05-02 12:45

Very little to add but I have been dx'd with athsma and pulminary sarc. I've had only low rumblings of sarc (except for a recurring right ankle flair) and the asthma seems worse at night but is almost always noticible. I had strong reactions to all the inhalers, so the only thng I take for the asthma is Singulair. It does seem to help. When the asthma does kick in strongly it is almost always frighting to not know if it is the Sarc or the asthma.

My best and most favorite is when my massage therapist works on my chest muscles and between the ribs for 20 minutes or so. The effect lasts for several days...

Re: Anyone have Asthma & Sarcoidosis?

Author: elaine emmi (---.client.attbi.com)
Date: 08-05-02 16:09

Hi all,

A few years before my diagnosis (about 7 I think) I was treated for asthma. Heavy duty inhalers and meds. But I seemed to get worse not better. When I was finally diagnosed, my doc said to throw everything away, that asthma wasn't my problem. And you know what, I got better without the asthma meds! Once in a while, I have a mild asthma attack but seem to be able to control it by calming my breathing and trying to relax my head, neck and chest muscles. It takes an effort but does work.

So, I wonder how many asthma diagnosis are really sarc?

Elaine

Re: Anyone have Asthma & Sarcoidosis?

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-05-02 17:02

Hi Elaine and everyone,

I was told I had asthma - before I was diagnosed with sarcoidosis. Having been around people who had asthma, I didn't think that was it. I wrangled with the doctor about it, because I wasn't given pulmonary function tests or even a chest X-Ray, just diagnosed with asthma and given inhalers for my cough. Later at another office, I was given inhalers again, but I was having more trouble breathing at that time.

The real test came when I took the pulmonary function tests at the hospital. The respiratory technician noted I had inhalers, which I hadn't been using, but had brought with me. I had a breathing test before using the inhalers and after using inhalers. There was no improvement using inhalers, so they told me there was no reason to continue them. The diagnosis of sarc came later, after a biopsy.

Mike, I also get relief from massage. My osteopathic physician has showed my husband some manual therapy he can do, and it helps relax my rib muscles and get rid of pain.

Everyone take care,
Belinda

Re: Anyone have Asthma & Sarcoidosis?

Author: steve (217.78.0.---)
Date: 08-17-02 03:34

hi tom i have had sarc from1974 and 7 years ago while having an attack of sarc the drs said i had asthma but when i wasin hospital with shortness of breath they could not make up thier minds whether it was asthma or sarc dont forget sarc can mimic other illnesses its so clever
steve

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 08-17-02 06:02

Actually, Steve, Sarc is not 'clever' at all. The Doctors are 'unclever'. They should be more precise with their language and all these "diseases" that they keep diagnosing.

Asthma is nothing like sarcoidosis. They don't 'mimic' each other at all. Sarc is an inflammatory condition which affects the interstitial tissue, while asthma is obstruction and constriction of the upper airways.

Doctors become confused because they have not realized that the high levels of 1,25-dihydroxyvitamin-d in Sarc affects the brain's ability to control muscles, including the airways muscles. Most doctors do not even realize why there is high level of 1,25-dihydroxyvitamin-d in Sarc patients, let alone what to do about it.

There is plenty of information here at SarcInfo.com to help you figure it out.
Keep smiling,
..Trevor..

Re: Anyone have Asthma & Sarcoidosis?

Author: Darlene (---.proxy.aol.com)
Date: 09-21-02 13:21

Hi Mildred,
I had Sarc of the bone marrow in 1990 and can now work. Be your own advocate and use this website, as I did not have this kind of info until recently. Go to Dr. Mercola's website -- www.mercola.com and follow the food plan and the juicing plan. This helps tremendously.

Re: Anyone have Asthma & Sarcoidosis?

Author: Donna A. (---.proxy.aol.com)
Date: 09-26-02 22:47

Tom, interesting you should ask. Right now I am in the process of finding out if I have Sarcoid AND Asthma. I am seeing a new doctor as I recently relocated to the Atlanta, GA area (warmer climate) from Michigan. I had an array of tests done for the new doctor...blood work, chest CT scan, chest x-ray and PFT. The CT scan shows small nodules around my lungs consistent with Sarcoidois. My PFT showed 55% obstruction on air forced out so my doctor has me taking two puffs of Advair a day for about a month. I will repeat just that portion of the PFT and see my dr. He is thinking I may have asthma. I'll let you know what the dr. tells me. I WAS on Prednisone from April to December 2001 and NEVER wish to have that torture again!!! Right now my treatment is 100 mg. of Imuran daily...no side effects but I worry about the long term effects. My breathing was better on Prednisone but had so many nasty side effects (facial hair, extreme weight gain, nervousness, moonpie face, irritability and mood swings).

Re: Anyone have Asthma & Sarcoidosis?

Author: luiggie (---.nas17.new-york2.ny.us.da.qwest.net)
Date: 10-17-02 06:41

Hi Tom;
It could be that your sarcoid is stable and that it's now the asthma giving you the most trouble. Perhaps the asthma medication is working and threfore your results, but the sarcoid has stabilized or at least is not getting worse. I have end stage pulmonary Sarcoidosis, and the Doctor says it's the asthma giving me the most trouble now. I'm on prednisone 15mg and I take the inhalers. The inhalers are helping with my congestion and I can see the difference, but as far as the sarcoid goes, it's getting me to the point of depression, something I had never had. I'm fighting all the way to the end, but as the days goes by, it's getting harder.

Best wishes and good luck, LUIGGIE.

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 10-17-02 06:52

Luiggie
There is no such thing as "end stage pulmonary sarcoidois". While you can still work a keyboard you can achieve remission. You need a new doctor, quick, in my opinion.

..Trevor..
ps: Welcome to sarcInfo. Take a look around and don't be afraid to ask questions.

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 10-17-02 07:06

Notice to all:

Click here to read the definition of ASTHMA.

Notice that almost all Asthma is characterized by SUDDEN ONSET wheezing. Very few of you have that, I suspect.

Asthma patients get asthma ATTACKS. Suddenly. Without warning.

Now, how many of us really have ASTHMA and how many have been misdiagnosed???

There are lots of reasons for constriction of the upper airways, as this review suggests. Statin and steroid side-effects, for example.

Print out the references (above) and discuss them with Doc.

..Trevor..

Re: Anyone have Asthma & Sarcoidosis?

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 10-22-02 22:49

Hi everyone,

Here is a newly published article in the American Academy of Family Physicians FP Report which says the first question a physician should ask before prescribing steroid therapy for asthma is, "Does the patient really have asthma?"

Belinda

Re: Anyone have Asthma & Sarcoidosis?

Author: Maggie (---.proxy.aol.com)
Date: 11-02-02 14:04

Hi Tom

I read your message on sarcoid and Asthma,and yes I too thought I had Asthma along with Sarcoidosis. I still do,but my lung Specialist told me that the Sarcoiois can disguise itself like Asthma. I really don't know what I've got I had a lung Biopsy done back in 1998,when the biopsy confimed sarcoidosis,after a chest x-ray was done and they found several nodules on both lungs. After I came out of the hospital I was seeing a lung doctor who told me I had Asthma. This went on for Three years in between which time I was treated with puffers and Albuterol,and nasal medications,for constant Sinusitis.

Last year I again got sick and was in the Hospital and they treated me for bad Asthma,mand the lung doctor told me that my Sarcoid was in remission,however upon coming out of the hospital I was continually coughing,and my primary care sent m to see a Lung Specialist who informed me that it was the Sarcoidosis that was giving me all of my symptoms, and I was also at that time seen by a Sarcoid Specialist who confirmed this diagnosis. I have been on various amounts of steroids,and methotrexate, which really haven't done anything.

I still see the specialist doctors ocne a month in Boston sometimes every few months,but I am not on any medications. I am frustrated and tired all the time,sometimes my lungs are fine,others they are not, the cold weather is really miserable for me,because i get what I call attacks which include not being able to breathe,which in turn turns into panic, and several times have thought i was not going to come out of this. I really feel that sarcoidosis sufferers deal with this illness in several different degrees. I am tired all the time,even though my blood seems okay,my joints hurt,and I am always out of breath.

Please e mail me and let me know your story I would like to find out if yours has any similarity.

Maggie

Re: Anyone have Asthma & Sarcoidosis?

Author: Cher (144.139.191.---)
Date: 11-03-02 07:37

Hi Everyone,
I just reread through this post & have to say that yes I do have the sudden onset wheezing that is that major characteristic of Asthma that Trevor mentioned earlier.
I do also know that mine is very definitely caused by my allergies & I don't have any attacks when I keep away from anything that I am allergic to.
Being that the worst allergy I have is to Soy ... I have had severe attacks after thinking I have not been around any of my known allergies. I have then found out that I have eaten bread that was made of Soy flour or some other product made of Soy & which I didn't know about (if it doesn't have a label I won't buy it now) ... Soy is in so many products that I am constantly aware of what I buy now & make sure I buy Soy free only.
Cheers everone
Cher

Re: Anyone have Asthma & Sarcoidosis?

Author: chelsear (---.rmt.net.pitt.edu)
Date: 12-06-02 11:57

Trevor,
I've also been told I have slight asthma and sarcoidosis according to the pulmonist. However, I'm 36 yrs old and never had asthma prior to sarcoidosis dx in July. I also read that there is such a thing called SURT [Sarcoidosis of the upper respiratory tract] Trevor, you mentioned sarcoidosis is very different from asthma but could this SURT cause asthma like symptoms that are relieved with inhalers and bronchodilators b/c of the inflammation being where the inhaled steriods reach? If this is the case maybe people have SURT and not asthma at all. I saw this info in a medical journal on line if I find it again, I will post it. My understanding is that granulomas can form anywhere including the same places that asthma does and both cause a type of constriction in the upper airways. Asthma literally constricts the upper airways and sarcoid granulomas block the airways cause a obstruction either way there's no air!!! Just a few random thoughts. Have you heard of the term SURT before??? I have only seen it referenced once.

chelsea

Re: Anyone have Asthma & Sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-06-02 13:11

Chelsea,
The most common problem that causes tightness of the chest and airways when breathing is what was exacerbated when Lana went through her herxheimer. Again it is 1,25-D acting on the muscles in this area (and the throat) and making them constrict and tighten. Lana just about choked when the Herxheimer caused her to be unable to breathe, but somehow she forced oxygen down to her lungs.

This is a factor that is not SURT (which certainly does not exist as your doctors have explained it to you) and is not asthma. High levels of 1,25-D are characteristic of sarcoidosis. But the good news is they are easy to measure. Click here to read about the tests. Get your 1,25-D measured and that will give you a starting point to work from.

In my opinion there is little risk that sarcoid granuloma in the bronchii would obstruct airways to the extent you are describing (yes, I have read the studies, I believe they are incorrect). However the airways granuloma would generate large Paracrine (local) concentrations of 1,25-D making proper muscle function even less certain.

The inhaled prednisone affects all the local tissues profoundly. Nobody knows exactly what it is doing. Try to find alternatives.

..Trevor..

What is wrong with me?

Author: Cristina Velez (149.151.185.---)
Date: 05-01-03 14:24

I have had asthma for over 20 years now, and I just celebrated my 52 birthday. For the past 15 years I have always gotten inflammation of my eyes. They had me take a blood test for Scar and it came back normal. Last year they did a biopsy of my lymph nodes in my chest and it came back positive for Scar. I have also been diagnosed with Pulmonary Hypertension. For the past two months it has gotten more and more difficult for me to breathe. I cough all of the time and I am so full of mucous. Right now I am on Levaquin, Advair 250/50, and I take Percocet for pain. I have such bad pain in my elbows and knees. I just had a CAT Scan and it showed that I have multiple lymph nodes in my lungs. I have an appointment with a Pulmonist and it was suggested that I have a Broncoscopy. I tried telling the doctors that I smell smoke all the time but I think that they just brush over it. I have never smoked at all in my life but I grew up in a house of smokers. Why if the nodes in my lungs are enlarged, why would my knees hurt so much? If there is anyone that is going through this hell like I am, please let me know. I just want some confirmation that I am not crazy. Thanks.

Re: Anyone have Asthma & Sarcoidosis?

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 05-01-03 19:22

Hi Cristina,

Welcome to SarcInfo. No, you're not crazy. Your story sounds familiar. Shortness of breath, cough, mucous and pulmonary hypertension indicate lung involvement. Your olfactory disturbance, eye inflammation and pains are common symptoms of high levels of dihydroxyvitamin-D, a by-product of sarcoidosis.

Please spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred.

There is also a search feature on the site where you can type in words and find specific intormation. Be sure to click on 'all dates' so you will get the most complete search.

If a phrase is written in bold type in a message, you can click on it to automatically get more information. Then press your back button to return to the text.

You may need a medical dictionary (you can find one online) for some of the papers but I hope you can get the basic idea of Trevor's description of sarcoidosis etiology and treatment. Let us know if you have any specific questions

You're not alone. Many of us have complained of the symptoms you mentioned. You can find others listed on the topic thread hypervitaminosis-D. It's important that you find a doctor who will test your levels of these D-metabolites. The serum ACE often comes back negative as you mentioned earlier. If your doctor is willing to prescribe Levaquin, perhaps he will order minocycline instead after you show him the papers for physcians.

Good luck and let us know how you are doing.

Meg

Re: Anyone have Asthma & Sarcoidosis?

Author: Barney (---.woh.res.rr.com)
Date: 09-10-05 10:45

Yes, I was diagnosed with both. I did have the instant onset of wheezing and losing most capacity to breathe. I am now in Phase 2 of Marshall Protocol and about to move on to Phase 3.
I also teach asthmatics how to stay out of the hospital, here are 3 hints:
1. Wash and dry all laundry, especially bedding, in fragrance free detergents and fragrange free softners
2. Deep breathe....sit up straight, breathe in as deep as possible thru your nose and hold a few seconds and then blow blow blow until you are past the point of believing you could not blow anymore (just like they make you do with the breathing tests). This allows the carbon dioxide to leave and more oxygen to enter the lungs.
3. THE MOST IMPORTANT ONE: START MARSHALL PROTOCOL AS QUICKLY AS YOU CAN. The only way to get well.

Hope this will help all. Barney

Re: Anyone have Asthma & Sarcoidosis?

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 09-10-05 19:21

Christina,

I also had the experience of smelling smoke all the time. It happened after a long series of what I was told was "sinusitis." First I couldn't smell anything at all and then all I could smell was the smell of something burning. My normal sense of smell did return and it was only later that I was correctly diagnosed with sarcoidosis. Sarcoidosis can cause a loss of sense of smell (anosmia) and abnormal sense of smell.

Remember that sarcoidosis is often misdiagnosed as other conditions.

You have come to the right place for information. Please keep reading and ask questions if you still don't find what you need.

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: Anyone have Asthma & Sarcoidosis?

Author: Jane 1 (---.sligo.indigo.ie)
Date: 09-11-05 16:20

Hi

I was Diagnosed with Asthma many years prior to Pulmonary Sarc. I have posted on this site before and still have many questions about the treatment advocated here but I do understand that there is no link between Asthma and Sarc. Funnily enough my asthma has almost cleared up ( I haven't had an attack since sarc diagnosis) but I am still being treated for asthma with Seretide 250 ( Advair) and Ventolin ( Which I only take now if I really need it, perhaps once a month) My Sarc is in remission, or inactive as my Consultant says, my Ace levels are normal, and my chest x-rays etc.
I do wonder about the drug therapy ( at least those that physicians recommend for Asthma) eg Pred, many courses of which I have been on in the past. I have taken no medication for my sarcoid. Most of my symptoms have quietened down. Whether that be temporary or not I don't know. I was Dxg Sarc through needle biopsy in 2002, My chest xray was clear of sarc in 2003, since then I have been hospitalised with arthymias which the docs took seriously because of my history of Sarc but found no known cause, (the heart flutters come and go).

I haven't taken antibiotics in about 3 years. ( History of bad bronchial Asthma)

I still worry about some stranger symptoms, because a lot of my Pulm Sarc symptoms were bloody strange and now and again I get those feelings - night chills, SOB and migraines - flashes in vision etc ( we've all probably had some) feelings of dread etc. I wouldn't consider myself fully fit or free of sarc yet (although Consultant has set me free of him for a yearly visit)
But I still wonder about the fact that since my sarc my Asthma has been kept well under control ( I have been a sufferer for 18 years!!) the medication hasn't changed ( inhaled steriods and bronchodilator).

I know there is no medical connection but still I find it strange that one disease seems to have overcome another - for the moment -
My Docs say the Sarc won't return, I am not as optimistic but happy to be free of it for the moment!

Regards
Jane

Re: Anyone have Asthma & Sarcoidosis?

Author: Lottie (---.proxy.aol.com)
Date: 09-12-05 03:41

Jane,

Many people are told that they have asthma, and are later diagnosed with Sarcoidosis. I was. I�m not sure why you don�t feel that there is a connection.

A clear chest x-ray doesn�t mean that you are clear of Sarcoidosis. I have always had clear chest x-rays, before and since my Sarcoid diagnosis.

Sarcoidosis is a systemic disease, and it can affect any and all of the body�s parts. Including, but not limited to the lungs. We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them. Prednisone, and/or other immunosupressants are commonly prescribed for Sarcoid, and they will not help, they will only allow you to get worse. They shut down the immune system completely, and allow the bacteria to grow without anything to stop them.

The steroids in your inhaler can have the same affect on your body as oral steroids.
"Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss" They can also suppress your immune system which could allow you to feel better with fewer symptoms, for a while. The bacteria will continue to flourish, and will ultimately cause enough damage for you to have increased symptoms.

Sarcoidosis does not go away on it�s own either. The Marshall Protocol (MP) is the only treatment presently in use that will assist the body in killing these bacteria that are the cause of Sarcoidosis.

Patients with Sarcoid are unable to regulate the production of vitamin D, and you will probably recognize many of the symptoms here at this site, Hypervitaminosis-D Symptoms (Hypervitaminosis-D refers to an excess of vitamin D) The fact that you still have your symptoms show up makes me that your Sarcoid is still present.

If you want an idea of how the protocol may help you, you can try the �non-medical� portion of the MP for a month and see if you feel better.

It is very important that you avoid vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. READ the labels! They�re adding it to many foods� including some brands of orange juice and bread.

You also need to avoid sunlight, and bright lights. The windows in your home must be covered to block the light from entering even if the windows are shaded by trees or overhang, or are facing north. If you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves. You also need to obtain, and wear NoIR sunglasses inside and out. Florescent lights in offices and stores can also cause problems, and you should wear the NoIR glasses there as well as when you are watching TV or working on your computer.

PROTECTING YOUR EYES

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

TESTIMONIALS TO THE NEED TO AVOID LIGHT

THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D

FOODS TO AVOID and FOODS SAFE TO EAT

VITAMIN D TUTORIAL

Just using these measures can help you with your symptoms, and help you decide if the MP can help you feel better, and get better.

I�m curious about why your doctor is sure that you do not have heart involvement with your Sarcoidosis. What tests did he do that showed you definitely don�t have cardiac involvment? I have cardiac involvement as evidenced by inflammation that showed up on an echocardiogram. It resolved temporarily after being on Prednisone for several years, and then last year the symptoms started up again, and a subsequent echocardiogram showed that the inflammation had returned, and was then worse than prior to my diagnosis of Sarcoid. Arrhythmias can definitely be an indication of Sarcoidosis in the heart. PVC�s, rapid heart rate� can all be caused by the inflammation of Sarcoidosis. Actually, most cardiac Sarcoidosis is diagnosed during an autopsy. Much too late to be of any help to the patient.

There is more information at this thread with information about sarcoidosis at our sister site, marshallprotocol.com for a better understanding of some of the issues about diagnosing and treating Sarcoid.

Let us know if you still have questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Re: Anyone have Asthma & Sarcoidosis?

Author: Jane 1 (---.sligo.indigo.ie)
Date: 09-18-05 15:34

Hi Lottie

Thank you for your detailed reply. When I was hospitalised with 'heart flutters' I had a trace done initially - then I was on a monitor for 3 days - I also had an echo ( is that the one they put the cold stuff on you and you can see your heart in all it glory on a screen??) The Doctor said he was looking for a Mitral Valve Prolapse and he was aware of my Sarc history -
After reading your post I did some research and it turns out that a hospital here carried out research into 'Doppler echocardiographic detection of left ventricular diastolic dysfunction in patients with pulmonary sarcoidosis' in 1999!! ( And I Quote the conclusion found ' These results demonstrate a significant prevalence of left ventricular diastolic dysfunction in patients with pulmonary sarcoidosis. The cause of this abnormality may be a subclinical sarcoid cardiomyopathy. '

All dutch to me ( with apologies to our friends from Holland!) but it does show me that perhaps even with all the tests I had, the MVP investigation that was carried out on me may not have been the only one that should've been.

The outcome of this leaves me even more confused - As My Consultant seems to believe my Sarc will not resurface again. But the heart palpitations maybe just another sign of heart involvement and I don't think they have taken this seriously. Another point to the Asthma DXG and Sarc. I have since I was a teenager got a dry cough in the Autumn - it can carry on for many weeks and it is so bad it keeps me awake nights, an uncontrollable cough, like whopping in a way. The year before I was diagnosed with Sarc - I had this cough pretty bad but thought nothing of it because I have always had it? and some of the years since my asthma has been bad I have taken the Flu Vaccine which seems to have cut down the coughing - I have been coughing for about 3 weeks now - that same bloody cough - I am indeed wondering whether this was Sarc all along and not Asthma.

Thanks again

As I said I am yet to be convinced with the antibiotic therapy - antibiotics make me feel crap but I would happily take them if this therapy advocated here was even mentioned by GP,'s Consultants or Professors that I have come across - none have ever heard of it? that puts me off - But anything is better than Pred, anything.

Regards
J

Re: Anyone have Asthma & Sarcoidosis?

Author: Lottie (---.proxy.aol.com)
Date: 09-18-05 22:53

Jane,

With regards to the quote from the study�
�the conclusion found ' These results demonstrate a significant prevalence of left ventricular diastolic dysfunction in patients with pulmonary sarcoidosis. The cause of this abnormality may be a subclinical sarcoid cardiomyopathy.�

Subclinical refers to�
When the symptoms of a disease are not apparent. Example: Many people have mild hypothyroidism and do not even know it. This is called subclinical hypothyroidism.

And Cardiomyopathy is a serious disease in which the heart muscle becomes inflamed and doesn't work as well as it should. There can be various causes.

So, a person could have subclinical Sarcoid cardiomyopathy, with some damage to the heart, but not have symptoms, yet.

The echocardiogram that was done about the time of my diagnosis showed a small amount of fluid around the heart, and the left ventricle was thickened. I also had a history of Mitral Valve Prolapse (MVP), which also showed up, but was more pronounced. I was told by the cardiologist at the time that there was nothing that should cause me any problems. Even though I was having palpitations, rapid heart rate, PVC�s, etc. He considered what had shown up on the echocardiogram as �within normal limits�. Perhaps your doctor did as well. (what you described does sound as though you did have an echocardiogram) I obtained copies of my report and read it myself, along with listening to the cardiologist.

After about three years on Prednisone all of the inflammation appeared to be gone, and I had a normal echocardiogram. I wasn�t having the symptoms either. I continued to take the Prednisone.

However, the symptoms started back up last year (2004). An echocardiogram which was done at that time showed not only was the inflammation worse (left ventricle wall was thicker, and there was more fluid around the heart than the first time, and blood was now going back through the mitral valve prolapse... among other things) than it was when I was first diagnosed with Sarcoidosis, but this echocardiogram also showed that my ejection fraction was now reduced down below "normal". It had been normal prior to my starting Prednisone.

When the cardiologist wouldn't return my doctor's calls for several weeks, my doctor asked me to do as much research on cardiac Sarcoidosis as I could so that he and I could decide what to do. Fortunately, that research brought me to SarcInfo and the Marshall Protocol. I am now off of Prednisone, and doing quite well as I progress through the protocol.

The Marshall Protocol is a new treatment in the world of medicine. Many doctors have never heard of Sarcoidosis, much less this new and novel treatment. It is also being used successfully on other Th1 illnesses (Sarcoidosis is a Th1 illness). Many doctors continue to rely on �mainstream� medicine, which consists of various forms of immunosupressants, including but not limited to Prednisone. There are several patients in the UK that are on the MP as well. I�m not sure exactly where you are, but you may want to post in this thread, and request the names of doctors who may help you with the MP. Depending on where you are, you may still need to search for a doctor who will help you

UK Patients

At this point in history, I would be surprised if you found a doctor that not only knew of the MP, but suggested it to you. They don�t seem to realize that for a very long time there has been evidence that bacteria are the cause of Sarcoidosis. They will still tell you that they don�t know what causes it. Most of us are �teaching� our Primary Care Physicians. My doctor had never heard of the MP prior to my finding this site. But, he realized the �sense� of the Marshall Protocol quite quickly after I presented the papers from here.

Sarcoidosis has for many years been considered an immune system that is �out of control� and/or �attacking it�s own body�, when in fact it is desperately trying to find the bacteria. The bacteria have learned to not only hide from the immune system, but to hide within it! And, the immune system realizing that there is something that it needs to find and kill, keeps trying to do so, resulting in inflammation. Benicar helps the immune system to find and kill the bacteria, but the immune system can�t do it all on it�s own, and the antibiotics help it to kill the bacteria.

Antibiotics may make you feel awful because of what we refer to as �herx�. An explanation of herx is here.
OBSERVATIONS OF JARISCH-HERXHEIMER REACTION

I wouldn�t be at all surprised to learn that your asthma has been Sarcoidosis all along.

Dr. Marshall also suggests that those of us with Sarcoidosis not have the flu vaccinations. The cell wall deficient (CWD) bacteria that cause our illness are smaller than virus, and the filters used in the manufacturing process are not small enough to block them. So, we are actually given more of the very bacteria that cause our problems when we get injections.

Please continue to ask questions, and let us know what we can do to help you.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Re: Anyone have Asthma & Sarcoidosis?

Author: Julia (---.access.as9105.com)
Date: 09-19-05 07:27

Hi Jane,

You're not likely to find many doctors who have heard of the Marshall Protocol in Ireland just yet - it's too new. But I'm so thankful I found this website when I was diagnosed, and thankful that my lovely open-minded GP was prepared to try the MP when the specialists wouldn't hear of anything but Prednisone.

I've been on the MP for eighteen months and I can't believe all the symptoms that are healing - things I never knew were sarc-related. Like you I started out very cautious, because you can find so much rubbish on the internet. I was a convert within weeks - you just feel yourself starting to heal!

If your doctor wants to contact mine for reassurance that the MP doesn't do any harm, he's happy to answer calls. The moderators can give you my address if you want to get in touch.

Slainte!

Julia in Belfast

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.

Re: Anyone have Asthma & Sarcoidosis?

Author: Jane (---.sligo.indigo.ie)
Date: 09-19-05 16:04

Thanks very much lottie

and thanks Julia - I feel the system between here, in the republic and Northern Ireland is so much different for medical care - I know my brother lives near Belfast and is quite happy with the situation. Here, however, there is a very poor, under funded health service for the patient ( not research, which is second to none), my GP may only take the recommendations of my consultant on board and that is ' Sarcoid is currently inactive - no treatment neccessary, follow up in a year' My hands are tied with my GP because I am a medical card holder and have to retain the same GP - So it may be harder for me to get the MP or even to get a referral to a Professor in Dublin who is a Sarcoid Specialist and wrote that paper I quoted. I suppose it is the usual if you are really sick they may take notice - at the moment my peak flow is good, my asthma is under control and my sarcoid is hidden - So I guess unless I move north of the border or get ill again, I think I will have to wait. I am happy to hear youse are both doing well on the Marshall Protocol - I know I have been negative about it in previous posts but that is really because I haven't heard much mention of it and like Julia says you can get rubbish on the internet - I recently read a medical forum where a doctor answering a query from a sarcoid patient who was worried they were getting eye problems said; No sarcoid rarely affects the eyes and remember to take plenty of Vit D - i was so outraged I emailed the site moderator but never received a reply needless to say!

Thanks all again
I'll keep an eye on the site and try and find out more as I go along

J

Re: Anyone have Asthma & Sarcoidosis?

Author: Lottie (---.proxy.aol.com)
Date: 09-19-05 20:02

Jane,

I am sorry that you will have problems with your health care system. Everyone, in any country can run into problems with some aspect of their health care: insurance, or individual doctors who aren't open to anything different.

I would urge you to collect as much information as you can to show to your GP who can perhaps follow up on your behalf.

I hope that you will also become diligent in avoiding vitamin D in foods and supplements. Avoiding sunlight as much as you can as well. Doing these can help you to feel better, and help to keep the inflammation down.

Also, if you sign up and add your email address, please be assured that only the moderators can see your email address. This is done for everyone's safety, and I could send you Julia's address if you would like it. Just so you know for the future, the software program won't allow any email addresses to be placed within the posts.

Do keep in touch. We're still here to help you, and I hope that you are able to persuade someone to help you on your journey to becoming well. Hmmm� would it be appropriate to contact the professor in Dublin yourself?

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

Newer Topic | Older Topic

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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis

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