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 The material here provides useful background, but much of it is now out-of-date.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 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


 Main Menu  |  Search  |  Log In   Newer Topic  |  Older Topic 
 Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   04-29-02 05:29

My 26 yr old daughter and I came down with a very bad cough along with wheezing, clogged head, etc. on April 1. She still has an occasional cough but I am worse now than when this thing first started. The big difference is that I have sarcoidosis and she doesn't. I have been to my pulmonologist 4 times in the past 4 weeks and am now on my third antibiotic. I did the prednisone 20mg x 3 days, then 10mg x 7 days in the beginning along with Levaquin and a strong antihistamine/cough syrup. I then went to Septra DS twice a day x 7 days along with more cough syrup...had a breathing treatment in the pulmonologist's office and an injection of 80mg of steroid last Friday. I was also given Tequin (for a total of 5 days) and a different cough syrup - Iophen C - NR. I just can't seem to shake this thing and continue to have a wheezy, and for the most part, nonproductive cough. The sinuses are still clogged and I continue to have a great amount of clear to discolored drainage. I did have a CXR and a sinus CT last week which showed that my sinuses weren't that bad. No word yet on the CXR. I've had a few respiratory bugs since I was diagnosed with Sarcoidosis in 1994, but never any that have lasted this long. If it weren't for the drainage, I would think this is a sarcoid cough. Has anyone else with sarcoid been affected with particularly resistant respiratory ailments this season? Interestingly too, my work environment changed and I transferred to the ER at the hospital where I work, one week prior to getting this thing.
 
 Re: Cough, cough, cough!
Author: Admin (207.175.253.---)
Date:   04-29-02 05:44

Becky,
Here is some text I wrote yesterday that seems to be applicable...

"It is important to note that the bacteria found in the sarc granuloma are very virulent, and very hard to kill. Some researchers have reported that a combination of the anti-microbial Plaquenil with the Tetracycline antibiotics has proved quite effective. In any case, it cannot be expected that a 'standard' course of 'standard' antibiotics is going to have any long term effects on active or inactive infections that may cause a sarc patient to relapse. It is going to take a concerted effort to get rid of these bacteria, just as concerted efforts are usually needed to get rid of Lyme disease and Bacterial Meningitis."

"Additionally, this paper notes that "Patients who had received intraarticular steroids".. and probably prednisone tablets .. "prior to antibiotic treatment, required significantly more courses of antibiotic treatment""

Take a look at the thread on Lyme disease for some links to additional treatment ideas.

As for the prednisone - it is only going to suppress your body's immune reaction and weaken its ability to fight the infection.

It seems strange to have prescribed Prednisone with the clinical history you describe.

Keep smiling Becky,
Trevor
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   04-29-02 07:58

Trevor,

The info you provided is helpful and I appreciate your quick response. I was somewhat concerned about the steroids too, but was in a place of desperation regarding this horrible "rip your lungs out" kind of cough. One part of me said "no way, it'll make me further compromised", but another side said "the inflammation is too great in my lungs and I have to do something". This has been a pretty scary experience for me, having not been through anything like this ever before. I wish now I would have resisted the steroids since they most certainly have placed me at a distinct disadvantage. By the way, I had been off line for quite a while because Mac (my kitty who also has a brother named Tosh) very politely meandered across my keyboard and completely froze everything. When this happened, I lost e-mail addresses (yours included) and even this sarcoid site address. I tried to locate this site but could not...guess I'm not computer savvy. Anyway, you've done a fantastic job getting the info forum going and have provided invaluable resources that were not readily available for 99% of us. I'm glad to be back in the loop again as this is the best site for information and easy communication regarding sarcoidosis. Thanks again for what you're doing for all of us.

Keep well and keep smiling!
Becky

P.S. Mac and Tosh (had to name them after my favorite computer!) have been permanently grounded from the computer!
 
 Re: Cough, cough, cough!
Author: Admin (207.175.253.---)
Date:   04-29-02 08:08

Becky,
Thanks for your comments.

While not presuming that your infection is tick-borne, it could have come from contact with blood in the ER or via aerosol routes, there is a good article "Tick-Borne Pulmonary Disease - Update on Diagnosis and Management" that gives a better overview, and shows that recalcitrant pulmonary infections are much more widespread than one might expect.

Cats - yup - I had a keyboard 'scent marked' one day. Had to replace it

..Trevor..
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   04-29-02 08:31

Trevor,

Very interesting since I was diagnosed a few years ago with Lyme disease this is a really good article. I bet mine is an aerosol routed infection b/c of some of the stuff I was exposed to. I will focus on wellness and "this too shall pass".

Thanks again Trevor.
Becky
 
 Re: Cough, cough, cough!
Author: Laurie B. (---.tnt2.saginaw.mi.da.uu.net)
Date:   05-04-02 08:26

Becky I have a chronic cough and use humabid to control the choking, 1tab bid if its just normal daily, and then 2 bid when things are bad I can't seem to live without this med and my Dr. said it is fairly benign. I am currently going through a terrible sinus infection, I just started my 3rd antibiotic and it seems to be working, keflex, augmentin and now cipro. I have chronic sinus problems even though the ent says I don't have sinus problems, of course they send me for sinus xrays only after being on antibiotics for about a month with little improvement. I can't get off of the humabid because even when I don't have a sinus infection I cough, cough & cough
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   05-05-02 15:54

Thanks for your input Laurie. I have used Humabid in the past and remember that it did help. I'm going to get back on it. I'm on my 4th antibiotic now in 5 weeks. Sure hope this does what it's suppose to do.
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-05-02 20:50

Becky,
I don't want to be too picky, (but you know I can't help it
What is the rationale for using short therapies of multiple antibiotics? This seems unusual to me. Generally it is a good idea to use a bare minimum of antibiotics. Otherwise your body may not respond to antibiotics when you are really sick, and it really needs them.

There is a thread in this Phorum on Lyme Disease. Sometimes it is very hard to treat. But there are some links in that thread to suggested treatment methodologies. Usually they involve multiple drugs in refractory cases. A frequent candidate is hydroxy-cloroquine (Plaquenil), which has strong anti-microbial activity. I suggest you take a look at those links and print out the most interesting candidates to discuss with your doctor.

..Trevor..
 
 Re: Cough, cough, cough!
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   05-05-02 21:20

Have you been offered some asthma inhalers and steroid nasal spray?

Many times...a few weeks of using them will you can recover from coughing by opening up the airways. The nasal spray will also open up the airways. Both are a lower dose of steroids so that you don't have a systemic affect.

I was told to use inhalers whenever I have a cold...I have some (one is a steroid and one is a bronchodialtor) on hand for that reason.

Just some ideas.....

Lynn
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   05-06-02 07:51

Trevor,
I knew you were going to ask that question This is going to be graphic...This respiratory bug that I've had since April 1, has been a bad one. The cough has been productive at times with discoloration (also have had sinus congestion). Other times, the drainage is clear. Since the mucous has continued to be indicative of infection (discolored) my pulmonologist has continued to prescribe antibiotics. Along with the antibiotics, I've been using a proventil inhaler, and earlier on I took antihistamines. This mucous causes a rattle in my chest that is almost impossible to expectorate. My sinuses continue to drain (again discolored for the most part) copious amounts of secretions. This cough has been the worst I've ever experienced. My family has all had this within the past month but it only lasted 2 weeks with them. As you probably are aware, the Levaquin and Tequin are given over shorter periods of time than the usual antibiotics...but they keep on working long after the last dose (up to 14 days). I'm pretty upset with myself for taking the intial 10 days of oral steroids and then the 80mg IM a week ago of the Depo-Medrol. I was desperate to do anything that might help me breathe better. My O2 saturations have been running from 93% to 96%. I've never been that low. The cough does seem to be a little better now but the prednisone has really screwed up my diabetes (was diagnosed with diabetes 1 1/2 years ago). My sugar is running from the 200s to 500s. My head still feels very plugged and my hearing is terrible (sounds like I'm underwater). I'm beginning to think that my pulmonologist (have been seeing him x 8 yrs) really doesn't know much about sarcoidosis since he continues to discount any association of the difficulty I'm having trying to rid my body of this bug with the other disease processes I have going on. He has flatly refuted any possibility that the sarcoid could be causing me problems. I guess the time has come to make a change. I knew there was a problem a while back and that's why I went to Charleston, SC, to get another opinion (couple of months ago). Problem there was I had to get copies of my chart for the other Dr who (when he saw my Drs name on my chart) personelly knew my Dr (I did not realize this). There was a mind block right away...in other words, I don't think the Dr I saw was willing to cross any lines, etc. since he knew the head of the practice where I go. Long story but lesson learned. Now I'm just trying to get through this current situation.

Take care,
Becky
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   05-06-02 08:02

Lynn, I appreciate your input. I have been using a proventil inhaler 4x per day. At this point, I'm hesitant to use anything steroidal because of what's been going on with me. The diabetes makes this tougher to treat.

Thanks again,
Becky
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-06-02 08:13

Becky,
I am often worried about the 'pulmonology experts'. They deal with so many people who are very sick. Sometimes I think that their aim is to sustain life, but that they have already written down the quality of life achievable by 'such a sick person'. Of course I shouldn't generalize, but it is my experience...

The best care I have ever gotten was from endocrinologists. You have diabetes, and you are therefore 'qualified' to be in the care of an endocrinologist... have you ever thought of looking into this possibility? Endocrinologists tend to have more challenging CE proscribed, and tend to be receptive to new ideas (IMHO). Ask around your hospital and see if there is one that is well regarded. Show him/her the links on treatment of Lyme disease, explain that you need to get control of the infection in order to stabilize your Blood Glucose levels, and see if you can elicit any interest. I have also found that internal medicine specialists, who have an overview of the 'whole person', have given good care.

It doesn't take a rocket scientist to understand how to handle antibiotics. Having said that, there could well be factors of which we are not aware, and those factors could be indicating the treatment you are describing.

Above all, keep smiling, keep your head, and this, too, will pass...
..Trevor..
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   05-06-02 08:37

Hi Trevor,

My pulmonolgist has been my primary for a long time. I do have an excellent endocrinologist who I only see only for the diabetes and hypothyroidism. It's interesting that you suggested what you did because I have been in that frame of mind-to get a general internist or ask my endocrinologist (he's positively great) if I could see him as a primary (his practice is so busy, that may not be possible). I didn't call my endocrinologist until Saturday because kept thinking this thing would get under control plus knew I had an appt comimg up soon anyway on the 24th.

Thanks again
Becky
 
 Re: Cough, cough, cough!
Author: Connie (---.dial.nwt.eclipse.net)
Date:   05-12-02 14:43

Hi Trevor,
I am so glad you included that article in your post. I have spent fives years trying to get my lyme disease to go into remission (dormant). It finally did after many years of abx. Unfortunately, my chronic lyme was hard to beat because it went several years undx.
The only problems to remain after Lyme are sleep disturbances, Chronic Anterior Uveitis, and a productive cough.
My current Opthalmolgist has not been able to keep the Eye quiet, so had my blood tested for numerous auto-immune diseases. The only thing coming back abnormal, is a high ACE level, which when repeated was still high. After an x-ray, showing normalcy, I had a thin-cut spiral high resolution CAT scan of my chest. This revealed three nodules in the pleura of my lungs. I recently underwent a gallium test (waiting for results)....looking for any other abnormal tissue. The nodules in the pleura were pea-size and just about impossible to biopsy. I was told these nodules are not consistent with Sarcoid, but yet Sarcoid has not been ruled out completely - guess that can only be done with a biopsy.
After reading the article, I'm wondering if those nodules are the cyst form of the spirochete laying dormant on my lungs?? My lyme Dr didn't feel this could be lyme related, as none of her patients, have had lung involvement like this with lyme disease. Do you know of any other articles I can read specifically on bacteria from Lyme disease and the lungs? After I read this article, I now believe I will make sure what ever they choose to biopsy, better look at the Lyme Bacteria as a consideration. Thanks, Connie
 
 Re: Cough, cough, cough!
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-12-02 16:31

ACE is produced by macrophages in order to catlyse the conversion of Angiotensin I into the more active peptide, Angiotensin II, as well as Angiotensin III and IV.

When the Angiotensin II binds at the Type 1 receptors (a complex protein)which are located (ready for it) in the Macrophages, a number of inflammatory Cytokines are released which enable the macrophage to do its job of gobbling up dead tissue, or whatever the activated T-lymphocytes are telling it to attack.

Consequently, serum ACE is a pretty good indicator of active inflammation. There are some genetic issues which I have explained elsewhere. Hopefully the Gallium Scan will tell you where that inflammation is located.

..Trevor..
 
 Re: Cough, cough, cough!
Author: sharon (---.sothfd01.mi.comcast.net)
Date:   11-06-02 18:34

I can really relate to the cough,cough,cough....I too have been on serveral anitb,allegran,etc....I'm now taking this cough suppresant call HISTINEX...this is the only thing that gives me relief from cough...It is so embrassing at work,when your at the movies,just anywhere....I am so sick of it and I glad to be able to relate with other who have the same problem...I HATE IT!!!!!
 
 Re: Cough, cough, cough!
Author: Becky (---.tampabay.rr.com)
Date:   11-06-02 19:02

Hi Sharon,
Thanks for your response. I ended up going through 6 diifferent antibiotics and finally started getting better around mid July. It's pretty amazing to me that this thing lasted 3 1/2 months. Currently, I'm still with a productive cough although not nearly as bad. My joints have been aching more, esp my hands and right elbow. I had been seeing my pulmonologist for > 8 yrs and finally had to make the decision to leave his care because it became very obvious to me that he did not care about me or my situation. I'm feeling pretty cynical right now about healthcare in general based on my own personel experience. We truly do have to keep our eyes open and be our own health care advocates. This site has been invaluable in this regard.

Keep well,
Becky
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-07-02 00:13

Sharon,
I found that my cough was the first thing to disappear when I got control of my 1,25-D levels. Have you had your D-Metabolites tested yet? That might well be the answer for you, too...

..trevor..
 
 Re: Cough, cough, cough!
Author: Sharon (---.sothfd01.mi.comcast.net)
Date:   11-14-02 14:51

Hello Becky and Trevor,

Just got out of hospital....had pneumonia....the sarcoid...has develop some
fungus baterica...and with into pneumonia....I was in the hospital for 5 days...and now have been prescribed prednisone 10mg every other day...

Thanks for you input
Sharon
 
 Re: Cough, cough, cough!
Author: Caroline (---.win.org)
Date:   11-14-02 17:48

Hi Sharon,

I am curious, from reading this forum, if the Rx of prednisone will cause the fungus to grow and multiply. Also, if you had bacterial pneumonia the same principal would apply? I'm not sure if I am missing something here?? Were you informed as to what fungus was found? During a broncoscopy about a year ago 'geotrichum' was found but this year a 3 month culture was negative. I had read somewhere that some broncoscopy equipment had been recalled due to contaminates.

I have had pneumonia twice before many years ago. It is just a miserable illness and feel for you. Take care. Caroline
 
 Re: Cough, cough, cough!
Author: bunnie (---.proxy.aol.com)
Date:   04-30-03 09:57

I have been COUGHING SO MUCH IAM SO TIRED NO SLEEP DIAGNOISED OVER 1 YEAR AGO COPD CHRONIC BRONCHITIS - I HAVE ASHTMA .. I TAKE ADVAIR COMBUVENT 2 PUFF 4X NEBULIZER TREATMENT HAD PREDISONE INTRALVENSOUSLY AND HAVE DONE THE PILLS SEVERAL TIME THE LAST TIME IN FEBRUARY.. I HAVE NSAL POLYPS ONE OR THE OTHER NOSTRIL IS ALWAYS CLOSED AND I HAVE SLEEP APNEA ALONG WITH CARDIAC PROBLES UNCONTROLLED BLOOD PRESSURE YESTERDAY 170/110

I CAN BARELY WALK EXTREME KNEE PAIN STARTED IN MAY.. I NEVER HAD ANY PROBLEM WITH MY JOINTS BEFORE TAKING STERIODS I AM SO DESPARATE TO STOP COUGHING AND HAVE NASAL SPRAYS, ETC I WAS RECENTLY TOLD THAT I MIGHT HAVE SURGERY TO REMOVAL POLYPS AND TONSILS
 
 Re: Cough, cough, cough!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-30-03 10:41

Bunnie,

Have you been diagnosed with sarcoidosis?
Who is looking after you (which clinic)?

Belinda
 
 Re: Cough, cough, cough!
Author: Michael (---.proxy.aol.com)
Date:   05-15-03 07:11

I can relate to the cough,cough,cough....I've been diagnosed with sarc. since 1985 and lived fairly well untill the later half of 1998. Since then I developed something call Aspergilloma, a fungus that grows and eats away on the lungs. From the coughing point of veiw, I tried everyhing possible to control it,but to no provail. My doctor gave me a RX for Tussinx DM, 1 teaspoon before bed time and with in 10-15 minutes cough will stop and asleep I go. Don't know if this will work for everyone, but it's worth the try. As for as the fungus is concern,I lost my right lung due to large holes caused by the fungus. If anyone is coughing up traces of blood, have your doc. do a bronc and check it out, left alone and untreated it will spread like it did on me. Now I have it on the left upper Lobe of the lung and it too has made cavitiesin it. At this time I preforming all types of test and tissue samples in hopes that the transplant team here in Gainsville,Fl will place me on the list. As for as meds, I'm now only taking 10Mg of prednisone dailly instead of 40Mg ,and Cipro (antibiotic)500 Mg twice a day for the first 10 day of every month. Coughing is the most stressfull part of this disease, hope no else has developed migraines, sarc also can be found in the brain.
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-15-03 07:22

Michael,
Prednisone is a dangerous drug. One of its most dangerous properties is that it reduces the body's ability to fight infections. At 40mg qd it almost totally suppresses the body's ability to fight infection. Even at 10mg daily it totally overrides the body's own production of adrenal corticosteroids, and makes a patient especially vulnerable to infection. There are warnings about this on the FDA prescribing information sheet.

I know you have confidence in your doctors, but, based on what you have written, they clearly have overlooked this issue.

So many Doctors think that Sarcoidosis is a life-sentence, and that anything they do is to try and "prolong" the patient's life. They lose sight of the fundamentals. So the patients get sicker. And sarcoidosis is actually a simple disease to treat. This is so sad.

..Trevor..
ps: Your migraines can be eliminated with ARB therapy - there is a link at the top left of this page to a thread describing this.
 
 Re: Cough, cough, cough!
Author: Lisa (---.proxy.aol.com)
Date:   05-15-03 15:33

Thought I'd share this info beacuse I can remember too well what it was like to have a cough that wouldn't stop. I have had pulmonary sarcoidosis for 3 yrs. When first diagnosed, my most prevelant symptom was a dry, hacking, uncontrollable cough. I couldn't even finish a sentence when conversing without coughing and being short of breath. It was not only embarassing, as people would look at me like I had TB and would make commemts like "you sound like you have pneumonia - you should see a Dr.", my chest and throat hurt so bad I would be in tears. After being diagnosed I was put on Pulmicort inhaler, but the coughing wouldn't stop. Finally after a few months of coughing non-stop, I asked my family Dr. if he would prescribe codene to give me some relief. He agreed and I took 2mg doses of codene 4 times a day. Although the dose was minimal, it worked! I finally had relief from a chronic cough that I had for many months.

I stopped taking it after several months upon the advice of a maternal and fetal specialist that I had a consulted when my husband and I decided that we'd like to start a family. After a few days of stopping the codene...I realized that my cough was gone. I know that many Drs. frown upon prescribing codene for patients with a chronic condition, but I firmly believe that taking this drug allowed my body time to relax and heal. Since I was prescribed a low dose of codene, I never became "addicted". Probanly what Drs. fear most. I still have the sarcoid, but my cough has never returned.

Just thought I'd share this because i know what it was like to have the torture of a chronic cough. Good luck to all of you and wishes for good health!
 
 Re: Cough, cough, cough!
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-16-03 05:43

I was able to eradicate the cough with neutraceuticals (whole food supplements--not herbs). Took me 3 months. It was costly, but was a terrific feeling. That was 2 years ago and the cough has never returned and I never once have taken steroids, or any other pharmaceutical drug for sarcoid (other than the Minocin and Benicar now) or the cough. I do still take the supplements.

Jan Lewis
 
 Re: Cough, cough, cough!
Author: pippit (---.asm.bellsouth.net)
Date:   09-20-03 00:14


I have also been having a cough (mostly when I'm sleeping and wake up choking and coughing in the middle of the night). Sometimes there is flegm that coughs up and sometimes not. What I have been noticing is that this and other lung symptoms fluctuate alot. For instance earlier today for most of the day I was wheezing and felt as though I had fluid in the lungs or as if they were coated with something. It almost felt like a bad chest cold, but then for some unknown reason it cleared up quite a bit tonight. Yesterday it also did that. I also have periods of several hours that my chest feels like the bronchial tubes just cave in. My chest feels very heavy as if I have rubber tubing that somebody squished down. It doesn't feel constricted like asthma but more like the tissue has gotten too soft to stay open. At those times it is even harder to breathe than when I have the other problem and my lung capacity becomes so compromised I can hardly talk. I have an appointment to see my primary care doctor on Monday and want to make sure he does the right thing for these symptoms. I am afraid of inhalers because I have a friend who has those and lately her doctor has been giving her ones that contain fine powder. She has been made much worse by this and it has increased her coughing. Apparently that seems to be the new thing all the companies are switching to. Does anyone know what would work for the symptoms I'm having and what these two types of lung symptoms are?

Pippit
 
 Re: Cough, cough, cough!
Author: DJ (---.27.98.82.Dial1.Denver1.Level3.net)
Date:   09-21-03 16:57

Pippit,

I also had that choking cough, along with shortness of breath and chest heaviness. I found that the cough and breathing problems were some of the first symptoms to be eliminated after I started Minocycline treatment. My doctor prescribed a steroid inhaler which is still in the box - never had to use it. Some of my friends with Sarc. have used oxygen to get thru the hard times.

DJ

 
 Re: Cough, cough, cough!
Author: Pippit (---.asm.bellsouth.net)
Date:   09-21-03 18:07

DJ,

How long did it take on ABX for your respiratory symptoms to go away? Also, I know very little about oxygen other than when I've had it in the hospital. How does one go about getting that on an outpatient basis? Is it a long process or fairly easy to do? Are there any risks to doing that?

Thanks,

Pippit
 
 Re: Cough, cough, cough!
Author: Rick (---.SNVACAID.covad.net)
Date:   09-24-03 08:16

Trevor,

I just can't seem to shake the morning cough (15 min after I get up) and phlegm (from clear to dark color) having to clear my throat every 5 minutes is driving me crazy. Is there a connection? And if so, why is it still there after 6 months of the protocol?

ENT said everything looks clear on the inside and wanted to treat for reflux . . . Alergist where no help at all, wanted me to spray every morning and evening! OTC drugs (suphedrin, Guaifenesin, allegra, clairieton, and actifed, don't help . . .

Any further advice would be appreciated.

Thanks,

Rick
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-24-03 08:33

Rick,
Talk with Doc about adding the Azithromycin protocol. But be VERY, VERY careful of the dose. I had been using minocycline/clarithromycin/bactrim for over a year, yet the Azithromycin aggressively found new chest bugs that had not been touched by the other abx. It did do 'the trick', however, and did it in just two weeks...

..trevor..
ps: if you let me know what level of minocycline you are at, I will try to guesstimate a Z dose for you to 'bounce off' Doc...
 
 Re: Cough, cough, cough!
Author: Rick (---.SNVACAID.covad.net)
Date:   09-24-03 09:03

Trevor,

For review . . .
I began the protocol on 3/12 and went from 100 mg of Minocin to 200 mg after 2 weeks and then back to 100 mg on 8/8. Also have been on Benicar 40 mg, 6-8 hrs until 8/31 when I decided to stop the Benicar (dizziness) to see what would happen . . . I was fine and no appreciable herx noted.

Then on 9/12 I added the Biaxin 500mg with the Minocin 3x week. Not much going on with the addition that I can tell.

At your recommendation I went back on Benicar at 20mg 3x day on 9/16.

My last blood workup on Sept 2nd was as follows:

1,25DH - 27.2
D25 - 13.3
ACE - 79
D-Ratio 2.0

Thanks again,

Rick
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-24-03 09:15

Rick,
Thanks for the review. Your 1,25-D looks pretty healthy. D ratio breaks down after your kidneys get back control, which may be the state you are in, or your 1,25-D may be passing through 'normal' on its way to a lower figure. If that's confusing - don't worry - the D metabolites look OK. ACE is high, but not especially so for the DD allele.

Yes, I would talk with Doc about trialling the Azithromycin. You should be able to get by with a "Z-Pack" of 6 x 250mg Azithromycin tablets. Just be careful to increase the dosage very gradually 125,0,125,0,250,0,250,0,500). It is the combination of Z+100mg Mino that does the trick. The minocycline sure seems to do something pretty magic to the Z. Not sure what, just yet.

When the herx starts to build to uncomfortable levels, stop taking both abx immediately, and start again only after the herx has subsided to a comfortable level. This stuff stays in the tissue for 3-5 days.

..Trevor..
ps: there is more info about protocols in the general Questions thread from a few days ago...
 
 Re: Cough, cough, cough!
Author: Rick (---.SNVACAID.covad.net)
Date:   09-24-03 09:28

Thanks Trevor,

My pulmonologist has some concerns about overdoing the antibiotics because of my functional heart murmor (leaky valve since age 3) but so far he has been willing to go along with the protocol, becasue I have been feeling better (the real results) . . . I will call his office today and see if he would be willing to replace the Biaxin with the Azithro.

Keep you posted and thanks again,

Rick
 
 Re: Cough, cough, cough!
Author: Rick (---.SNVACAID.covad.net)
Date:   09-24-03 19:00

Trevor,

Just thought I would let you know that the pulmonologist agreed to the Rx for Azithro. I hope this will be the "clear all" for me.

Thanks again,

Rick
 
 Re: Cough, cough, cough!
Author: Serc (---.sligo.indigo.ie)
Date:   09-27-03 17:24

I have coughed since I was a child. Always between October and April -
A cough that like whopping cough made me choke to the point of throwing up and was uncontrollable. That cough subsided to a point when I started getting the flu injection about 7 years ago, however now I just cough stuff up, constantly - it is a controabble cough , a hack, in the last week I have had some blood spotting in my sputum - it terrifies me - But I am wondering is this just related to the biopsy I had 9 months ago - where I did cough blood for weeks after - or related to the sarc - or maybe another even more serious cause - I am on no medication for Pulmonary Sarcoid - I had recent Blood tests - last week - which all came back normal - now I haven't seen them but they are normal according to my GP ( I am becoming Paranoid I know) I worry that the Sarc is progressing in camoflage - well at least without anyone noticing it but me.

Coughing is something you learn to live with but I have learned to hate!

Serc
 
 Re: Cough, cough, cough!
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   09-27-03 19:52

Hi Serc,

Did those blood tests include the D-metabolites? If so, you need to get the hard copy from your clinic so you can see the numbers for yourself. You can call the Medical Records or Release of Information department and they will send you that information. Results within the normal lab ranges are not necessarily normal. There can be other surprises also, even when you are told everything is normal. IMO, the only way to ask intelligent questions is to see the same data that the doctor sees.

Coughing up blood is a very scary experience and it should always be reported to your doctor. But violent coughing can rupture tiny blood vessels so the bloody sputum could be benign and nothing to worry about.

I'm sorry you've learned to accept your persistant cough. If it is due to sarcoidosis, you don't have to put up with it if you get the proper treatment. And as you pointed out, your sarcoidosis is likely progressing in "camouflage"-at least from your doctors.

Good luck,

Meg
 
 Re: Cough, cough, cough!
Author: Phoebe (---.cdc.gov)
Date:   10-07-03 08:22

My husband was diagnosed last year when he was hospitalized due to passing out. He has had a severe sinus problem for years and has had two surgeries on his nose. In the hospital, last year, he received a pacemake because it was discovered that his heart stopped beating causing him to pass out. The doctor said that the cause of the problem was due to sarcoidosis. In the last 6 months, he coughs morning, noon and night, with choking and vomiting (due to heavy drainage. He has not had any treatment since being hospitalized last year. His coughing has gotten so bad, it not only wakes him up during the night at least once or twice with coughing etc. for anywhere from 45 mins. to an hour and then continues when he gets up in the morning. He has done everything possible in the sinus area, allergy area and there has been no change--just getting worse.
He can't sleep and I can't sleep. What can be done? I think our primary care physician has decided that it is something he has to live with. Not acceptable. Please give me some directions as to what he can do.
 
 Re: Cough, cough, cough!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-07-03 08:31

Phoebe,
Welcome to SarcInfo.
The tutorials at the top of this page explain what causes, and how to cure, sarcoidosis. The papers at the top right of the page explain the technicalities in language your Doctors should be comfortable with.

Sarcoidosis is a simple bacterial disease. Please help us get that message to the correct folks at the CDC, so that we can more easily propagate the information about the successful antibiotic therapies we have developed here at SarcInfo.

..Trevor..
 
 Re: Cough, cough, cough!
Author: Michael C (12.214.255.---)
Date:   10-07-03 11:27

Because my own evident sarc involvement is very minimal in my lungs and not in my heart as far as I know, I wondered why I still seem to have many of the same symptoms as those whose lungs are seriously affected.... Shortness of breath upon exertion, tiredness, low energy.

I ran across this study

Impaired exercise response in sarcoid patients with normal pulmonary function

which states: "The present observations indicate a significant maximal exercise limitation in sarcoid patients without significant pulmonary impairment which could be related at least in part to an impaired heart rate response to exercise."

It seems that even if some of us haven't been diagnosed with "cardiac sarcoidosis", we may all have some cardiac involvement through impaired heart rate response. It also indicates to me that this disease in any form is more serious than many take it to be.

Michael C
 
 Re: Cough, cough, cough!
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-07-03 16:42

Michael,

Thanks for the link to an interesting study. You make a good point with your analysis of the conclusion. It's a rare sarcoidosis patient who doesn't report years of symptoms prior to diagnosis. Symptoms which could, as you point out, be life-threatening. With our new understanding of the etiology of sarcoidosis, earlier diagnosis and validation of systemic symptoms are now possible. Hopefully, the medical establishment will soon recognize that this is not primarily a lung disease. IMO, the focus should be on the serious effects sarcoidosis has on the entire body before major organ damage has occurred.

Meg
 
 Re: Cough, cough, cough!
Author: Mike (---.sippican.com)
Date:   10-17-03 04:51

I have Pulmonary Sarcoidosis and spent a lot of time coughing. I used to get chronic bronchitis, but it turned out to be untreated exercise induced asthma. When my cough gets bad, the only medicine that seem to work was Tussionex Penkinetic Suspension. It is a codeine derivitive. One dose lets me sleep through the night. I just "dealt" with the cough during the day. I'm also on Advair 250/50 twice a day and albuterol before I exercise. In April I started coughing again. Turns out I needed to increase my Prilosec to 40mg in the morning, and add 300mg of rinitidine before bed. Haven't had bronchitis since, and the cough has gone away. My doctor and I agreed not to treat the sarcoidosis yet, med side effects are worse than the disease. I can't take steroids because I am allergic to them and will get glaucoma. I also have sarcoid in my eyes (in remission) and lymph nodes.
 
 Re: Cough, cough, cough!
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-17-03 18:56

Hi Mike,

I'm glad that the measures you and your doctor took have resolved your cough. And I would not dispute that you also have asthma. But why not treat your sarcoidosis now before it gets worse. You can thank your lucky stars that you are allergic to steroids. I suspect that the meds your doctor has in mind to treat your sarc are not the safe, low side-effects ARB and antibiotics that Trevor recommends. The bacteria causing your eye and lymph node involvment are multiplying and may be affecting other body organs as well. I suggest you print out the Papers for Physicians for him and ask him about running the D-metabolite tests. You have a lot to lose by waiting.

Meg
 
 Re: Cough, cough, cough!
Author: yvette (170.22.76.---)
Date:   11-03-03 12:20

i was diagnoses with sarcoidosis in 2000 after a major all fruit diet. At the time iwas 29 and terrified. it satarted with my eyes and parotid glands swelling and the rash on my shins and the unbearable itching. eventually the shortness of breath kicked in. But, the coughing really kicks in when i have a really bad cold. thank god i have been off prednisone therapy for almost one year now. but, from the increasing shortness of breath and wheezing i get. i do still use my combivent inhaler as needed. i find my self waking up in the middle of the night about to cough up a lung literally. but, nothing my inhaler can't handle thought. I thank god every chance i get for allowing me to breathe another day. thank you for listening i've never talked with anyone this honest about my illness except my oldest sista. to everyone else it's hard to explain so, when they say," do you have asthma?" my response is always yes.

stay strong and keep breathing as best u can
 
 Re: Cough, cough, cough!
Author: yvette (170.22.76.---)
Date:   11-03-03 12:26

sorry about my spelling didn't pay attention . my eyesight isn't that good, also.
 
 Electrical Bug Killers
Author: nordskoven (---.74.18.53.Dial1.KansasCity.Level3.net)
Date:   02-16-04 22:05

Bob Beck discovered a cheap means of using micro-electricity to kill pathogens. Beck based his modifications on a study from the Albert Einstein University Hospital showing microelectricity could kill the A.I.D.S. virus. Beck adapted the current load for skin resistance so it could to be administered without treating the blood outside the body.

Beck has distributed plans for these simple blood, lymph and gut cleansing systems for those who are handy. Beck commends a Canadian company, for their high quality devices. Beck has no commercial interest in this company. The founder cured his wife of Chronic Fatigue Syndrome using Beck's protocol. I have used them and am quite pleased.

This is an alternative to antibiotic therapy, and pathogens cannot develop a resistance to these methods as they can with antibiotics. One Beck device is in contact with the skin for blood cleaning. This unit has a silver colloid maker for internal ingestion to clean up gut bugs. The other one is a magnetic blaster to clean deep tissue and lymph. That's the one-two-three punch.

Note from Admin. I have deleted this message as it is within my expertise to know that these devices do not work, that they cannot work. People who prey on desperate and impressionable sarcoidosis patients are the scum of the earth. Please do not bother us again with this terrible attempt to prise money out of folks who can ill afford to be seduced by your pseudo-science.
Signed: Trevor
 
 Re: Cough, cough, cough!
Author: carmelita1951 (---.dsl.pltn13.pacbell.net)
Date:   01-22-05 18:44

hi;
i cough every day vey litle but i smoke like 2 a day,my problem is
i start to get flem only in the mornings with blodd stains
i went to the doctor and he took x rays and told me that was ok and givme some cough medicin like roubitassin
but it doesnt work,
what it could be??
respond
 
 Re: Cough, cough, cough!
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-22-05 19:12

Hi Carmelita,

Welcome to SarcInfo. Have you been diagnosed with sarcoidosis?

Sputum is sometimes blood-tinged when tiny blood vessels are broken during repeated coughing. If the Robitussin doesn't work, you need to tell your doctor. He may prescribe a different medication and/or do more tests to see why the coughing continues. And, of course, you should quit smoking.

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: Cough, cough, cough!
Author: carmelita1951 (---.dsl.pltn13.pacbell.net)
Date:   01-24-05 12:10

hi i dont have cough , but my chest is very congested and feel burning and i feel very thirsty
 
 Re: Cough, cough, cough!
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-24-05 14:09

Carmelita,

I'm glad that your cough is gone. Our website is designed to help people who have sarcoidosis recover with the Marshall Protocol.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

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: Cough, cough, cough!
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-31-05 13:59

Hi Trevor and all . . .

In Nov04, I was given an Rx (Cefuroxime) for greenish congestion and the usual coughing in the morning hours. Then I started on PhII on 2Dec04.
It's been going pretty well but now I'm getting the cough and congestion back as well as running a bit sluggish . . . I uprooted an old rose bush and spent the next hour on the couch. Whew! Feel like an old man.

Anyway, moving right along . . . do I once again get another Rx for Cefuroxime to rid myself of the green crap and cough or could this be a residual of the combo?

Thanks,

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .
 
 Re: Cough, cough, cough!
Author: Admin (---.ventca.adelphia.net)
Date:   01-31-05 14:25

Rick,
Cefuroxime is a beta-lactam antibiotic. It will make your CWD infection worse, although it may kill any active blood-borne infection. Your Doc needs to be quite sure which it is you have.

From what you have said it sounds as though you are experiencing lung herx, which often does not occur until the stage 2 or stage 3 antibiotics kick in.

If you take Cefuroxime it will protect the CWD from the immune system - they use penicillin and cephalosporin antibiotics in the lab to culture CWD bacteria, and there is also evidence that these types of antibiotics cause more resistant species of CWD bacteria.

And yes, the herx is an increase in inflammatory cytokines in your lungs, which do have the effect of making it harder to breathe.

Take it easy, there...

..Trevor..
 
 Re: Cough, cough, cough!
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-31-05 14:30

Thanks Trevor,

I guess I will forgo the Rx and just hunker down with the PhII plan. Hopefully the congestion will pass . . .
And, I don't mind taking it easy with the labor duties.

Thanks again,
Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .
 
 Re: Cough, cough, cough!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-31-05 16:24

Rick,

For what it's worth, I had return of greenish discharge and coughing that I hadn't had for a while -- after I started Phase Two and then as I pulsed through additional antibiotics on Phase Three. The good thing about Herxing, though is that you know you are doing something productive!

My green discharge usually lasted hours, and never more than 2-3 days. My cough seemed to return on the mornings of my Herxing days, but it was much milder than before I started the MP. I hope this helps.

Best,

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
 Main Menu   Newer Topic  |  Older Topic 


 Need a Login? Register Here 
 User Login
 User Name:
 Password:
   
 Forgot Your Password?
Enter your email address or user name below and a new password will be sent to the email address associated with your profile.

Historical perspective on Sarcoidosis:


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

Go to the Sarcoidosis Information Discussion Info Message Board Forum

Sarcoidosis

Privacy Policy -(C)Copyright 2002-2007 by the Autoimmunity Research Foundation   (email webmaster)
All rights reserved - Powered by Linux and Phorum