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 The material here provides useful background, but much of it is now out-of-date.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


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 Heart Sarcoid
Author: Anthony Morris (---.bc.hsia.telus.net)
Date:   07-11-02 16:18

Could i get some info on some symptoms i have had Sarciod for the past 14 years but in the past 2 it has just taken over my kidneys and now they say my heart. It started with my legs going numb and left arm and my bottom lip all get the same feeling and then it follows with the chest pain and it is like someone has put a rod in my heart. I take the nitro and it helps but i am very short of breath as well i can not do much at all i walk around a store and then i am done for the day. I am on 60mg of prednisone a day i have been up to 120 mg but that was last year, i will be going in to Hospital for a open Biopsy of the lungs heart sack and lymph nodes, but the numbness is the one that is bothering me and the chest pain .
Any one would like to give me some thing to go on i would be most grateful

God bless you all ,
Tony
 
 Re: Heart Sarcoid
Author: Caroline (---.win.org)
Date:   07-12-02 22:22

hi tony, i have neurosarc. i just had a cardiac echo with a new pulmonary doc. my right lower chamber is not pumping blood as it should. since i can't walk on the treadmill, i will have a albuterol(sp?) stress test next week and another echo. then i will make a return visit to the doc and see what they find. she hopes to find out this way, as being non-invasive.

from my reading, cardiac involvement is pretty grim. i did not discuss much with the doc as i just turned inward when she advised me of her findings.

i've had chest discomfort front and back which i had thought was from my lungs. my lungs and pft's look 'good'. recently i have felt what i can only discribe as my heart beat feeling 'squishy'. if you can imagine squeezing a sponge underwater, that's how it feels.

i tire very, very easily also. if i cook a meal or one small house chore which can be as simple as dusting, i have to lay down. i am exhausted. sometimes my husband will have to help me to my feet because i don't have the strenght to get up.

i am sorry i have no advice to give. there is much to be learned by reading the many informationals here. i just want to say hello and welcome. even with losing a couple battles along the way, maybe we will someday win the war.

caroline
 
 Re: Heart Sarcoid
Author: Anthony (---.bc.hsia.telus.net)
Date:   07-13-02 05:34

re, Thank you Caroline,

I will let you know how i get off with the tests i go in to Hospital on the 25 th and then they will tell me what and so on they plan to do,they have siad they will get me off the Prednisone and try me on something new.
onc more thank you all .
God Bless you
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-13-02 08:41

Caroline said: "even with losing a couple battles along the way, maybe we will someday win the war"

That, folks, is what it is all about...

..Trevor..
 
 Re: Heart Sarcoid
Author: Cher (144.138.106.---)
Date:   07-13-02 22:43

Hi Anthony & everyone,
Anthony my Sarc symptoms are very much the same as yours with very severe chest pain (& what I have often thought was a heart attack feeling) which is like a hot poker being put into & pulled out of my heart numerous times every day. I was prescribed Prednisilone at my initial diagnosis & took it for 6 weeks (with very severe reactions to it) & have refused it ever since.
For pain relief & to cope with the breathlessness I have been taking MS Conten for 2 years.
There is a link that is near the bottom of the Phorum home page regarding Opiods & it has worked so well for me that I have been able to return to work after an initial 3 months in hospital & further three months off work. Yes I still experience pain every day & the breathlessness never goes away completely but my quality of life has improved immensely from the use of Morphine (MS Conten). I have several other problems from the Sarc which are not helped by the morphine but to be able to work gives me so much pleasure that I will stay on the MS Conten as long as it continues to give me that quatlity.
It's worth reading the link if nothing else & something to show your doctors.
Cheers & stay positive ...
Cher
 
 Re: Heart Sarcoid
Author: Caroline (---.win.org)
Date:   07-15-02 21:02

Hi Tony,
i failed to mention in my previous answer, that the doc who found the possible problem with my heart said I would most likely be kept on methotrexate. also, that after a few more weeks time, the dose could be increased.

i will be most curious as to your treatment and what you are given for a time frame for improvement or at the least stabilization.

caroline
 
 Re: Heart Sarcoid
Author: Tony (---.bc.hsia.telus.net)
Date:   07-16-02 05:21

Hi Caroline,

I went yesterday for an MRI so now i am just waiting to get the results and then on the 25th i see the Dr that is doing the open biopsy on me they have told me they will change all my Medication so i will keep you up to date on it all once more thank you for your suport .

Tony
 
 Re: Heart Sarcoid
Author: Rae (24.68.184.---)
Date:   07-17-02 10:44

Hi Tony:
I was Dx'd with pulmonary sarc in 1997. Than cardiac sarc in 1998. I had an abnormal ECG..in fact I was told I had a MI. I had chest pain and SOB and I felt all the symptoms were related to the lung disease. After seeing a specialist and having an echo they ruled out a heart attack. It was not a surprise to me because I am sure I would have known if I was having an MI capable if causing the damage the ECG showed. Further testing ( EP studies) showed a 2;1 AV block so they put in a permenant pacemaker. I now have a complete heart block and am pacemacker dependant. I went off steroids in 1999. But due to a relapse in the lung disease it looks like I am going back on prednisone... Tony there is very little information out there re: cardiac sarc. What type of biopsy are you having? The Drs here.( Calgary and Saskatoon) are very reluctant to do a biopsy on my heart. Anything I read its such a hit and miss of the grandulomas, therefore the procedure can give you a false negative.

Good luck with all your tests Tony. Would like to hear what kind of meds they put you on.. I am scared of starting prednisone again. What part of BC do you live in?

This is such a great site, very informative. It sure helps to now you are not alone. Rae
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-17-02 11:13

Besides deposition of granuloma and the subsequent fibrosing by collagen, Sarc can also harm your cardiac function by depositing calcium into its soft tissue, and even into the heart muscles. I was looking at a pathology slide of a calcified heart this morning, but I can't find the reference right now (sorry).

Was this a factor in either of your diagnoses?

..Trevor..
 
 Re: Heart Sarcoid
Author: Caroline (---.win.org)
Date:   07-17-02 17:14

Hi all,
i went for my stress echo today. the speed of my heart beat was increased by drugs (IV). i am unable to use the treadmill. once the heart rate was at a target speed the tech had a cardiologist come in and look at the monitor. i will see my own doc on monday at which time i will find out the results. I will also have Trevor & Lizs' paper in hand to discuss.

i didn't have any chest pain or discomfort during this, so hope that is a good sign. it's a long wait! i just hate waiting for results.......
Caroline
 
 Re: Heart Sarcoid
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-18-02 13:50

Caroline:
I too, had to have this stress test because I couldn't walk or use the tread mill. My results were okay on it. They call it a "man made stress test" because they inject you with a drug that increases the heart muscle much as you would if you were on a treadmill.
My name is also Caroline....I sign Caroline McG.
 
 Re: Heart Sarcoid
Author: Tony (Anthony Morris) (---.bc.hsia.telus.net)
Date:   07-20-02 23:40

Hi All,

I hav not been to goodthe past week back in ot Hospital it looks like it has come back to my Kidneys i hav been put on Morphine it takes the edge of it but ,i will be going to get the results on the 25th when i see hte Dr that will do all the biopseys i hav not forgoten you guys take care
Tony
 
 Re: Heart Sarcoid
Author: Caroline (---.win.org)
Date:   07-21-02 12:37

Hi Tony,
Just a short note to let you know i am so sorry to hear you are having such a rough time of it. Have you discussed Trevor's theory with your Doc.? Take care, thoughts are with you--get better soon!
Caroline
 
 Re: Heart Sarcoid
Author: Tony (---.bc.hsia.telus.net)
Date:   07-25-02 07:34

Hi Caroline,

Just a short note to let you all know i am hanging in there it has been a tuff few days ,today i go to see the Dr's so i will let you know how it all gose and what they plan to do with me and my mediction,so you all take care
 
 Re: Heart Sarcoid
Author: Cher (144.138.225.---)
Date:   07-25-02 09:35

Good on ya Tony,
As we say here in Australia, keep on keeping on.
Thinking of you from over the oceans ...
Cheers & Stay Positive
Cher
 
 Re: Heart Sarcoid
Author: Caroline (---.win.org)
Date:   07-25-02 21:39

Hi Tony and All!
How are you doing Tony? Hope you are hanging in there.....

A brief update on my visit today with a cardiologist. She is sending me for a cardiac catherization next tuesday. both echos indicate a pumping problem in the lower right back lobe. she said a cath would indicate a false positive, a blockage or sarc. if it would be a blockage they would discuss it with me, then possibly continue on with a stint or angiography (balloon).

she also sent me home with sublingual spray nitroglycerin. I am not looking forward to the cath., but i sure want to know what is going on.

I hope my D3 results come back soon. What is back consists of four pages but the D3 measurements are still 'pending'.

Caroline
 
 Re: Heart Sarcoid
Author: Tony (---.bc.hsia.telus.net)
Date:   07-27-02 10:51

Hi Caroline and All,

Just me still kicking after a tuff week a lot of pain hart and kidneys i seen the Dr but i will not know anything till next week ,i just thought to keep you all up to date my med's are still the same so no change.
I hope you all are do OK ,will talk to you all soon take care please .

Tony
 
 Re: Heart Sarcoid
Author: Mary M (---.dialsprint.net)
Date:   08-29-02 12:05

I have cardiac sarc. grim or not I've beat it for 4 years now! My vision did white out usually before I fainted due to the blood not getting to the brain. Just so you know there are some of us around that are doing great!
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-29-02 12:12

Mary,
Welcome to SarcInfo.
When you had problems was it an erratic beat? I have always figured that if a Sarc patient can get muscle spasms and cramps from high 1,25-dihydroxyvitamin-D then that could eventually affect the heart. But I never let my sarc get that bad, so I don't have any experience to draw from. Can you recall irregular beats? Anything other than vision white-out?

I guess I am thinking one ought to be able to recover from Heart Sarcoid once one fixed the underlying 1,25-D problems - but that is not the current medically accepted philosophy... which is that sarcoidosis affecting the heart is most frequently fatal... You have proven that false, now we need to figure out how to help others...

..Trevor..
ps: Pacemakers apparently help with prognosis, which would also strengthen my spasm or cramp theory...
 
 Re: Heart Sarcoid
Author: Mary M (---.vnnyca.adelphia.net)
Date:   08-30-02 14:29

Trevor:
I have a pacemaker for the complete block that I have. They reconstructed my heart. I have an o ring on my mitral valve and they did the maze in the Left atrium because I was in A fib. Then when they went to wean me from the bypass the heart was to weak and deceased to start up again. So they added the pumps to my system and allowed it to rest. Little by little I came back. That was 4 years ago. And have since done very well. I have periods where my body has some serious events. My vision whites out and I can not get 02 and I stagger. I can feel my heart beating, it just is not progressing my systems. Mayo has yet to figure it out they just do not know. Sometimes it happens so fast I just drop with no warning what so ever. I have the internal loop that automatically records I have Q'd it during an event. And it is set to record itself. So far it has showed no arrhythmias. This last trip in they found a lesion on the replaced o ring. They also discovered my tricuspid valve has a big leak. My pacer wire is blocking it. I do wake up to leg cramps in the night horrible ones. Sometimes even though I take zanaflex. Usually I stagger, last year I totally fainted twice. So as of yet the answer to your question is no erratic beat. Before they put in a pacemaker in I could not stay conscious. Day or night.

Mary M
 
 Re: Heart Sarcoid
Author: Kathleen (65.121.96.---)
Date:   02-14-03 16:15

Hi All -

My experience with sarcoidosis is primarily cardiac. My main symptoms have always been chest pain, shortness of breath and fatigue. This has gone on for 3.5 years. My chest pain has always been in exactly the same place. I had a stress thallium that was positive; an angiogram that was negative for any blockage; despite the cardiologist knowing my sarcoidoisis history (my father and sister had pulmonary sarcoidosis), he did not take biopsies.

My heart rate (52 before illness) elevated to up to 130 resting; I had an exercise tolerance test 2 years ago - my resting heart rate at that time was documented 100; and my alveolar exchange percentage was 50, with other deficiencies. My blood pressure is also higher; I was approx 110/60 - I was as high as 175/115; with almost constant diastolic hypertension.

Along with tachycardia, I have had irregular rhythms; (I am an ex-paramedic and familiar with cardiology) and have noted skipping consistant to second-degree block; unfortunately, we have been unable to document this; and when I had it while I was being monitored at the hospital, it was blamed on the "machine".

My latest echocardiogram shows pulmonary hypertension, that was not present before. My ACE and CRP levels have always been elevated; and despite not finding sarcoidosis in my bronchoscopy, there was much inflammation and "mucous plugs". Sarcoidosis has been visualized in my eyes.

My chest pain has been helped with oxygen and nitroglycerin; I have been on a beta blocker for over 2 years now, and have noticed relief with Trevor's regimen of Benicar, Minocin and reducing vitamin D. My shortness of breath is also much better; my pulse rate is generally in the 60's or 70's, with occasional tachycardia; and my BP is 110/80 at this time.

I am 41, and despite these and other findings, have been deterred from the diagnosis of "cardiac sarcoidosis". I, however, have no doubt it is my heart; everything else has been excluded, and the cardiac meds helping is a major clue!

I would certainly like to think that Trevor's regime can change the fatal prognosis of cardiac sarcoidosis; I believe the strain on my heart is lessening with this treatment, which should lead to better and longer health.

I know cardiac sarcoidosis can be anything from tachycardia to third degree block and arrest; mine is not "obvious enough" for the specialists; but I know I am sick, and my blessed GP knows I am sick, and together, with this site, we are working out of it!

Hang in there - I know it's scary, but there is help, and there is hope!!

Kathy in Wyoming
 
 Re: Heart Sarcoid
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-14-03 18:25

Bayyinah,

Wecome to SarcInfo.com. I hope you will continue reading here because I think you will find interesting and helpful information.

As for the skin lesions.. my skin lesions finally resolved after I avoided sunlight and vitamin D foods and took a course of Minocin, an antibiotic. I suggest you read through these topics on this board:
If you have Sarcoidosis, you must stay out of the Sun
Vitamin D levels in food
ARB therapy - nuts and bolts
Minocin treats Lymph, Skin & Lung Sarcoidosis


Best wishes,
Belinda
 
 Re: Heart Sarcoid
Author: mmommer (---.nas1.cedar-rapids1.ia.us.da.qwest.n)
Date:   02-16-03 14:50

Tony:
medical technology has come a long way.. I am a cardiac sarcoid patient. It was discovered 5 years ago, and I am doing well. though they watch me extremely close. I have a pacemaker for my heart block. I do get extremely hard chest pains. Usually my arms go numb. It's all from the decease. Lately I have a hard time digesting food I become breathless. But over all I water ski, play golf, snow ski. etc. If you have anything questions I will try my best to answer. Mayo discovered my cardiac sarcoid by biopsy.
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-16-03 15:08

Mary,
It sure sounds as though your sarc is still fully active. The "hard time digesting food", dyspnea and numb limbs are tell-tale signs, IMO.

Consequently, I am not sure that I agree with the treatment course you have taken. Certainly, in my personal case, I placed my long term health ahead of my desire to "water ski, play golf, snow ski", etc.

Now that I am in remission I am indeed very glad that I took that approach. Looking back, I can see how close I came to also becoming a cardiac patient like yourself. In fact, the ARBs were first prescribed for me in 1999 because some early signs of cardiac sarc involvement had appeared. Now I have a totally clean bill of health, of course, (except for the lung fibrosis).

I seem to recall that you had lost quite a bit of your vision from successive eye operations. How are your eyes doing? Are they still OK?

Keep smiling,
Trevor
 
 Re: Heart Sarcoid
Author: Kathleen (65.121.96.---)
Date:   02-16-03 17:42

Mary -

You mentioned "extremely hard chest pains" - when I started taking the Minocin, the Herxheimer effect was a very hard heartbeat - it resulted a weakness radiating from my left chest - and it beat so hard, I was afraid it wouldn't beat again...my Benicar was increased the next day, and that feeling is pretty much gone - but is was very scary - I wasn't sure I'd make it through the night! Is that the way your chest pain is?

All the way through this illness, I have felt I would ultimately die of it, but not immediately, except that night. I no longer have that feeling - even of eventual death due to sarcoidosis.

I don't know how you exercise - I have been afraid to overload my heart; plus, my shortness of breath wouldn't allow much activity.

On a good note - last night, watching TV - I did a little dance - you know, the goofy dancing you do - and I had NO SHORTNESS OF BREATH or CHEST PAIN! It is truly a miracle!!!

Take care,

Kathy in Wyoming
 
 Re: Heart Sarcoid
Author: Johnine (---.dialup.mindspring.com)
Date:   03-02-03 12:52

I have had a lung biopsy in 1981 verifying I had lung sarcoid. About three years ago I became chronic and could no longer work. My heart has had a pace maker put in and I am on 3 heart medicines for a very fast heart rate.
How did you find out you had sarcoidosis of the heart. The University of Washington wants me to go in for a galium/thalium test to see if I have sarcoid of the heart. Any information would be appreciated. Please answer by email Thanks Johnine
 
 Re: Heart Sarcoid
Author: Kathleen (65.121.96.---)
Date:   03-02-03 16:13

Johnine-

My symptoms have always been cardiac - chest pain and shortness of breath. I had an echocardiogram 3 years ago, which was basically fine; another one about 9 months ago, which showed pulmonary hypertension, and an enlarged left atrium (? I think - I'll have to check the report.)

I had a gallium scan, that was basically unremarkable (but the radiology tech who performed the scan told me it would be - that it was basically an outdated, too-general test, that is mostly inconclusive.)

I had a stress thallium 2 years ago - which was positive for ischemia in the left ventricle (again I think - I'll have to re-look at this report also!) This scan has been a matter of debate since then - some physicians say it is positive, and appropriately in the area sarcoidosis is likely found; and others say it is artifact. Given that I am symptomatic, and the administering physician found EKG changes and found the test positive, I go with that.
No one has ever suggested repeating it. My subsequent angiogram was negative for any blockage; although it was irritable. (Despite knowing my history of sarcoidosis - familial and symptomatic, the cardiologist did not take biopsies.)

I have also experienced hypertension and tachycardia - my EKG's are usually fairly normal, with some atrial arrythmia - therefore, again I am told that it is not sarcoidosis - and that it is not "probable". My blood pressure and pulse, which used to be around 110/60 and 52 have been as high as 174/113 and 130 resting pulse. While my symptoms are not as obvious as a major blockage would be, they are still quite incapacitating. The chest pain location never varies, and shortness of breath has always been present.

My father and sister had pulmonary sarcoidosis, so I have a family history...

After seeing multiple specialists and cardiologists, I am back with my GP; I take beta blockers to slow my heart and BP; and the ARB Trevor recommends, which also helps lower BP and pulse. After my experience, all I can say is that if you are symptomatic, and you already have a positive biopsy, and everything else is ruled out, it's hard to dismiss cardiac. Something makes my heart beat incorrectly, and yours also. As Trevor said to me, they may find nothing structurally wrong, but inflammation - which is sarcoidosis - can really have a profound effect.

I have never had a positive biopsy (my bronchoscopy was negative, and that's all that was ever biopsied); but my blood tests for inflammation (ACE,
CRP, vitamin D metabolites) have always been positive, and I am responding very well to Trevor's regimen of ARB, Minocin and avoidance of vitamin D.

Best of luck, and take care...

Kathy in Wyoming
 
 Re: Heart Sarcoid
Author: Kathleen (65.121.96.---)
Date:   03-02-03 17:32

Johnine -

A quick addition to above - I was willing to biopsy anything to get a firm diagnosis - after reading the thread of general questions, I am glad I was NOT biopsied any further; I am responding appropriately to treatment, and have clear evidence of inflammation - and that's good enough!!

The important thing is to get better...

Kathy in Wyoming
 
 Re: Heart Sarcoid
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-02-03 18:11

Johnine,

Doctors love to test you and quantify whatever they can with numbers. But you already have a biopsy-confirmed diagnosis of sarcoidosis. IMO, further testing is unnecessary, costly and possibly dangerous. If you consent to these tests and they are positive, you will almost certainly be prescribed high doses of steroids.

The only test you need is a simple blood test for ACE, 25-D and 1,25-D. The treatment for sarcoidosis is the same no matter what organ of your body it affects-get your D-levels under control and eliminate the offending organisms.

Meg
 
 Re: Heart Sarcoid
Author: Bevin Black (---.vianet.ca)
Date:   03-10-03 19:43

Trevor, Just checking in. I was diagnosed with sarcoid of the heart in 1996. I had catheder oblation to repair superventricular fribulation. Prednisone took care of heart block while I was on it. While waiting for a pacemaker, I discovered that Corn was my trigger for sarcoid. Corn was in 80% of the foods and drugs that I ate. I no longer go to doctors, and take only the drug Celebrex. (It seems to have helped my heart, as well as my aches) I have not had my mitrial valve checked since they told me "I was a very sick man" about 3 years ago. I have gotten about 90% of my strength back, since quitting corn. My heart will start to jump around within 12 hours of accidently ingesting a corn product now. I've written this on this web site before, and on others. This took me many years to figure out, but no Doctor has listened to me yet. I'll just check in, once in a while, to tell you that I'm still very alive. I hope someone studies this sometime, because they all seem hung up on someone's theory that sarcoid is inhailed. Bevin Black
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-10-03 20:00

Hi Bevin,
I am certainly glad that you are alive, and basically well. Sarcodiosis is that sort of disease - it can be conquered.

Have you had your D-Metabolites measured yet? The results will give you a pretty good basis to plan how to go forward from here so as to retain your health. Without that data you are really likely to miss something quite important.

..Trevor..
 
 Re: Heart Sarcoid
Author: Helen Turner (---.cache.pol.co.uk)
Date:   03-24-03 14:55

Hello
My name is Helen I was diagnosed with Cardiac Sarc in 1987 following repeated bouts of V.T. and also Bradicardia Many times having to be defibbed into normal rhythm I had Angiograms Gallium Scan MRI scans and ended up with open Heart Cardiac Resection and Biopsy. I had 2 years of Prednisone treatment which caused many many side effects and was fitted with pacemaker which has been changed now 3 times I am also on Beta blockers and ACE inhibitors I can do almost anything that I want these days. I do get a little short of breath and suffer night time leg cramps but I think that is a small price to pay for being alive and able to enjoy the wonderful delights of our Grandchildren I am now 55 and hope to be an old lady. I hope that this brings some hope to some of you

Helen.
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-25-03 13:16

Helen,
It is wonderful that you are happy with 'the hand' that fate has dealt you.

It really has been very hard for those of us that were diagnosed some time ago. I was given 18 months to live (stage IV) in 1978, and, at times, it has been very hard to hold on until the cure came along.

Now that the cure is here we really need to focus not on just 'extending' our lives, but on returning them to normal. Personally, I have never felt better, and I know my body is working better than it ever did before. The antibiotic and ARB treatments that you will read about on SarcInfo will allow you to plan to enjoy your great-grandkids too..

Welcome to sarcinfo,
..Trevor..
 
 Re: Heart Sarcoid
Author: Helen Turner (---.cache.pol.co.uk)
Date:   03-31-03 13:02

I know that feeling Trevor, after my surgery I was told they had no idea what my prognosis was I would certainly recover from the surgery but as for the Sarc in my heart no-one had any idea how it would act My Surgeon even told me he had only ever seen it at the same stage in a post mortem.
That's why i consider myself very fortunate to be alive. I have sent you e-mail regarding my latest problems hope that is o.k.

Helen
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-03-03 14:17

What do I need to read on this website to understand the following 2 statements that Trevor wrote?


"Now that the cure is here we really need to focus not on just 'extending' our lives, but on returning them to normal."

"The antibiotic and ARB treatments that you will read about on SarcInfo..."

Thanx,

-Tom Rogers
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-03-03 15:33

Tom,
You should start by reading the "Patient Tutorials" at the top left of this page, followed by the "Papers For Physicians" at top right, if you are familiar with medicine.

Then you should read through many of the 4,890 messages that have been written here over the last few years. The more messages you read, the greater the depth of understanding you are likely to reach. These messages were written during the time that "the cure" was evolving.

Actually, for that matter, it still is evolving

..Trevor..
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-04-03 11:30

I am told by my pulm doc that I have a mild case of sarc but it is confirmed by mediastinoscopy biopsy of lymph node. (Jan 31, 2003)

My question is, does sarcoid spread like cancer spreads? If so, (my doc said it doesn't spread btw), how do I know if it goes to my heart or my brain?

Obviously, this happening is very scary.

Thanx,

-Tom
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-04-03 11:44

Tom,
sarcoidosis no longer has to be "scary". The inflammation is due to CWD bacteria, and it will spread as the bacteria spread. A proportion of patients manage to eliminate the bacteria without any help, but the rest of us have to use the techniques explained in the tutorials at the top left and top right of this page.

Welcome to SarcInfo
.Trevor..
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-04-03 13:26

Thanx Trevor, but how do I know if it goes to my heart or brain? Are there certain symptoms to look out for? Are there tests I can have done to check?
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-04-03 13:45

Tom,
As a generalization, it doesn't matter where the inflammation is, it gets fixed the same way.

An honest doctor will tell you that most cardiac sarcoidosis is diagnosed upon autopsy. However, you should notice cardiac discomfort before it becomes a major problem.

Neurosarc is just normal sarc where the bugs have found some brain tissue to live in. And eye sarc and lung sarc and all the rest. Just fix it, Tom. If you wait until it can be diagnosed, with CAT scans and the like, it will be a lot harder, and take a lot longer, to kill off all the bugs...

..Trevor...
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-04-03 16:25

So is all sarcoidosis from the CWD bacteria? My doc told me no one knows the cause.

According to the info presented on this site, I should start a regimen of Benicar, Minocin and reducing vitamin D? How do I get my doc to do this? He told me to stay off the Internet because most of the info there is just plain wrong.
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-04-03 18:01

Tom,
I really can't be expected to answer for your Doc. He/she can read the papers Liz and I have written on the issue of bacterial pathogenesis, and I would welcome any data that he/she is able to present that might indicate that we are wrong

First you need to get an idea of where your D metabolites are. If your 1,25-D is too high then you need to be more careful of herxheimer. Your D-Ratio will also help keep track of the progress of your therapy. You also need to cut all Vitamin D out of your diet, and out of any medications, at least until you achieve remission.

Then you need to get an angiotensin blockade in place. This lowers your 1,25-D and allows the antibiotic to penetrate the tissues better. The final step is to start using an antibiotic that is capable of killing the CWD bacteria. Your doc can find the dosing info he needs in the paper (top right on this page) "Minocycline Dosing Issues".

..Trevor..
 
 Re: Heart Sarcoid
Author: Margo (---.adsl.duke.edu)
Date:   04-04-03 18:05

Tom

The Internet can provide lots of information. Just like a library or a newstand, some of the information is good, some is not. We must all, always, be informed consumers of information. (I like to be informed, so I could not work with a doctor who told me to stay off the Internet. In fact, I have read more medical research on sarcoid which I found through searches on the Internet than most of the doctors we see.)

When a site offers products for sale for various medical conditions, one should be skeptical, because of the obvious conflicts of interest.

At this site, there are links to medical articles that support the approach to treatment. And, no one is selling anything.

By gradually reading this site, starting with the tutorials, reading some of the threads, then going to links to articles in medical journals, you will see the scientific basis to the approach here. As a very important addition, the proposed treatment for sarcoid involves very safe medications, unlike the standard treatments for sarcoid.

I read a great deal on the site. Then, we worked at reducing exposure to vitamin D (from sunlight, foods, and supplements) - this is something you can do without involving the doctor. The vitamin D levels were tested. Symptoms decreased a great deal when we reduced exposure to vitamin D. (The patient is a family member, not myself.)

Then, we found a doctor who would support us in the next step. We began using ARBs. Another big improvement in symptoms! After about two weeks, low-dose minocycline was added. It is too early to evaluate the minocycline regimen, although, just as with the other steps in this treatment, the symptoms were as predicted (mild herxheimer).
Soon, the vitamin d levels will be measured again.

There is a thread about how to find a doctor who will do this. Convincing your doctor will be easier if you understand the protocol, and are knowledgeable about the research.

Margo
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-04-03 18:28

Thank you both for your input. I will definitely take these papers to my doc and see if I can't get this taken care of before it gets out of hand.

Thanks again for pointing me in the right direction!

-Tom
 
 Re: Heart Sarcoid
Author: Kathleen (65.121.96.---)
Date:   04-05-03 16:56

Tom,

Just some information - my sarcoidosis is seemingly "extrapulmonary", or not in the lungs....though it seems I have a different illness than those with pulmonary sarcoidosis (95% in the "accepted" literature), I can assure you that I consider it just sarcoidosis. I am primarily affected in my heart, and have definite neuro symptoms - along with many other body systems affected!

I don't mean to confuse you - my point is that sarcoidosis can, and does, affect us wherever the inflammation strikes!!! It is all worsened by the same thing (CWD bacteria and excess vitamin D metabolites), and is all helped by reducing the vitamin D and taking Minocin and Benicar. People tell me how scary it must be to have it in my heart - but knowing what it is and how to fix it really makes me feel pretty good! So basically, what we want to do is not spend so much time isolating what is affected, as concentrating on fixing it!!! The medications Minocin and Benicar are helping ALL my symptoms, whether it is chest pain or gastrointestinal irritation. If you have chest pain, by all means, you should have it checked out - but my point is that it is easier to treat all the symptoms at this point, than to worry about what it will affect next...

Just a mention about physicians - my GP has always encouraged me to search the internet and research to find more and better information than the standard "prednisone will treat it" guidelines. I have seen many specialists - all pretty closed minded to any variation, both in my symptoms and in treatment; and I am very fortunate to have found a doc who is open to new information - and is definitely encouraged by my improvement!!! IMO, any worthwhile doctor will be encouraged by your willingness to participate in your illness and treatment, and to find better treatment.

Best of luck,

Kathy in Wyoming
 
 Re: Heart Sarcoid
Author: Helen Turner (---.cache.pol.co.uk)
Date:   04-06-03 14:43

Hi Kathy

Just like you I have Heart sarcoid . Until I found this site I had no idea that all my other symptoms i.e. Sinus blockages, muscle and Joint pains ,headaches ,insomnia ,vertigo, were all connected to the sarcoidI now know that I need to reduce my intake of vitamin D I only ever had dealings with Cardiologist or G.P. My sarcoid was diagnosed in 1987 when I had Surgery for what was thought to be either an anurism or Cancer, it turned out to be Sarcoidosis. I then had Prednisone treatment for 2years and had a pacemaker fitted to keep my heart rhythm correct.
All the other symptoms have followed on. I am now going to get either G.P. or Cardiologist to look at Trevors papers and try and get on ARB and Antibiotics I am hopefull that I can soon look forward to being pain free.


Keep Smiling ,were both lucky to be alive

Helen.
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.biz.rr.com)
Date:   04-23-03 13:52

Hello, I finally had my appointment with my second pulmonolgist today. I shared with him, the info on this website. He seemed interested, and he encouraged me to research the web for info on Sarc. He said he doesn't do ACE levels because we already know they will be elevated and they won't tell him much. He only did a calcium and Vit D check along with metabolites.

He looked at my previous Chest XRays and CT scans, and said it was minimal. When I told him I had breathing issues since Fall of 2000, then how I have had PACs episodes, he ordered PFTs and ECHO. As the appointment went on, he was concerned I might have cardiac involvment. He was just going to give me inhaled steroids and Albuterol but by the end of the appointment, he gave me a script for 20mg Prednisone 3x day, and some drug that prevents bone loss.

My first pulmonologist said I should just live a normal life, like nothing is wrong with me, then I get to this doc who scared the heck out of me, saying I may have cardiac involvement. Who the heck do I believe and trust?

To top that off, I had some palpitations after lunch today, so I was thinking "this is it".

This is not how I want to live, being scared all the time. I shared with him the info on this website, and he said that Myocin and ARBs would be a "last line of treatment", and suggested I start on 20mg Prednisone 3x day.

I'm scared over this Prednisone, yet, if there is cardiac involvment, I want to do something to take care of it.

Here's to hoping someone can give me some advice on what to do. I get an Echo and PFTs tomorrow.

Thanx,

-Tom
 
 Re: Heart Sarcoid
Author: Helen Turner (---.cache.pol.co.uk)
Date:   04-23-03 14:16

Tom

I have Cardiac Sarcoid Diagnosed in Biopsy in 1987 I also had 20mg Prednisolone 3xday but no bone saving drug I now have terrible back problems. For your own sake try and get it lowered. My symptoms in the begining were bouts of Ventricular Tachicardia (very fast heart) and fibrilation I had to be de-fibbed back into sinus rhythm I now take 360mg daily Beta Blocker and am fitted with pacemaker I do fine with this. I still have Sarc problems and I have just had the blood tests and hope to start on Trevors programme after I have had back op on the 6th May. Please try not to live in fear I am sure that you, like me can get through this hard time I think it is not knowing for sure once you do you will cope.

Please Keep smiling.


Helen.T
 
 Re: Heart Sarcoid
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-23-03 14:31

Tom,

Nobody can tell you what to do. The way things are right now, doctors are not prosecuted for giving patients prednisone, and doctors ARE afraid that someone will sue them if a patient has symptoms that something sarcoid-related is happening to their heart and they don't do something. Writing a prescription for prednisone is something a doctor's malpractice underwriter will still likely find the standard or acceptable treatment.

The best that you can do is educate yourself and decide what you want to do and what treatment you are willing to accept. Prednisone is not a cure and it brings its own set of problems, as you probably know. Do a search on any search engine to see for yourself, or read some to the links at the bottom of the page. Lots of folks on SarcInfo.com have had heart palpitations, arrhythmias, chest pain and other symptoms. Some of us are progressing with the special protocol of antibiotics and angiotensin receptor blocking drugs. We are setting a new trend.

When you get the results of your vitamin D metabolite tests in a few days, you should have a better picture of what is going on. Have you been spending much time in sunlight the past couple of weeks? If your 1,25-D is abnormally high, that can lead to changes in the heart rhythm.

If you have any questions or want direction to scientific research, just ask.

Belinda
 
 Re: Heart Sarcoid
Author: wendy (---.stcgpa.adelphia.net)
Date:   04-23-03 15:21

Tom - I have cardiac sarcoid as diagnosed by a stress echo cardio and thallium scans. It was weird seeing these tiny white dots in the lining of my heart near my mitrol valve. I am fine now. Frankly, the most critical point and difficult time was dealing with very high levels of Vit D after being in Mauii for two weeks in the sun! I had tremendous heart arrythmias, chest pressure and sharp pains. I also was waking with night sweats. I was unable to sleep laying down because the pain in my chest/heart area was too severe. So, I "slept" sitting up...for weeks.

I too was confronted with the prednisone issue. I decided to start on prednisone AND the antibiotic treatment that is described in many of the papers and discussions on this web site. I started with 20mg of prednisone per day. I also completely altered my diet and ate nothing with either Vit D or calcium in it for months. I am now back on calcium, but will never eat Vit D food again (until I am totally in remission...as Vit D foods send my heart into spasms). There is a good list that Belinda and others have put together of the Vit D rich foods. Also, I am a label reading queen...nothing passes my lips until I've read the label.

Getting my Vit D down has helped stablize my heart. I've been on this regime for three months now. I also have been a hermit all winter, staying completely out of the sun.

Recently I began weaning myself off of the prednisone as I do not feel it is benefitting me. GOING OFF HAS BEEN A KILLER. So, think very carefully about starting. Once you begin it is very difficult getting off. I am now at 10mg daily. It has taken me three weeks to stablize again. My next step will be to go to 10mg every other day and do the antibiotics (as recommended several places in this web site) every other day...to alternate the drugs so that they are not working against each other.

Perhaps your dr. would be willing to compromise in this way?

Best of luck...Cardiac sarc is terrifying. I can relate to that. But getting my Vit D under control has improved my heart symptoms tremendously!

Wendy
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-23-03 17:42

Wendy,

How long have you had cardiac sarc?

-Tom
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-23-03 17:57

Helen, Belinda, and Wendy:

Thanx for your comments. First, it is good to know that with cardiac sarc, you still can live a long life. From what I read, you die quickly. Second, I will be spending alot of time in prayer the next few days to decide what to do about the Prednisone. (If I start it, it will be on Sunday morning)

I get my Echo tomorrow, if that looks normal, I think I will NOT start the Prednisone (how do I tell this doc I don't want it? I next see him June 3)

Also, I went to get the price of the script for Pred today, and the Pharmacist said he could not fill it cause the doc left the # off. Could this be a message from God that I should not take it?

I have not had arrythmias (I have had two Event Monitors) only palpitations were found (Pre-Atrial Contractions). Both my family doc and Cardiologist said this is totally benign. When I have episodes of these PACs, I usually get about 5-9 per minute for 1-3 hours (avg). One time they lasted 8 hours. Also, I told new pulm doc that if I take a Xanax, they go away. So I'm not sure where this new pulm doc has come up with thinking this is sarc related.

It is amazing what a tremendous help and comfort it is to know that I can talk to people about this, that understand. I pray for everyone on this website for complete and utter healing. Thanx again!

-Tom
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-23-03 18:09

Tom,
Print out this piece I wrote about Cardiac Sarc on CHEST Journal and give it to Doc. It explains how cardiac sarc is nothing special, it just represents progression of the sarc into the heart muscles as the microbes spread throughout your body. As Wendy found, it's severity can be dealt with by not taking in ANY Vit D, and then by killing the bugs with minocycline or doxycycline. Both are antibiotics that your physician should feel very comfortable about prescribing, much safer than prednisone.

Your Blood Pressure and arrhythmia should come under control soon after Doc puts you on 40mg of Benicar every 8 hours, as outlined in the "New Treatments emerge..." paper at top right of this page.

..Trevor..
ps: By the Way, there is no drug on earth that can stop prednisone leaching away your skeleton at the doses your Doc is contemplating. Also, the new bisphosphonates are starting to be recognized as relatively risky in Sarcoid patients.
 
 Re: Heart Sarcoid
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   04-23-03 18:58

Tom,

I'm sorry your doctor frightened you. Some years ago, I felt palpitations too and had an EKG that confirmed premature atrial contractions (PACs) which are benign but sure can feel scary. I'm glad I wasn't diagnosed with sarcoidosis at the time because who knows what would have been ordered. The simplest of measures, however, solved this problem for me. I was drinking too much coffee! I thought of that when you said that Xanax, a tranquilizer, made them go away. This could be 'much ado about nothing'.

Meg
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-23-03 19:05

Tom,
I had assumed that you had read the SarcInfo discussion thread about the dangers of Avascular Necrosis to folks who take Prednisone at 60mg daily. If you haven't read about this new International Study then Click Here to access it.

It is a good idea to click on the "Older Messages" link at the top of the subject listing on SarcInfo. We have been through a lot of hard work to get to the cure, and sometimes the important basic stuff gets lost into the mists of time.

..Trevor..
 
 Re: Heart Sarcoid
Author: wendy (---.stcgpa.adelphia.net)
Date:   04-24-03 08:53

Tom -

I am not sure how "long" I have had cardiac sarcoid. I was initially diagnosed with ocular sarciod (in my right eye) four years ago...but the reality is this process of hyper active immune system must have been an underlying possibility and a trigger (which I think in retrospect was my difficult preganancy and birth of my son in conjunction with horrible work stress/relationship problems and unrelenting yeast infections) finally resulted in it presenting in my right eye.

The heart arrythmias, chest pain, chest pressure (which are distinct sensations) have been going on for two years. Some of this now I realize was probably Vit D surges (not Herxheimer reaction as I was not yet in treatment, but reactions to a great deal of sun or digestion of Vit D rich foods). I have been in the Emergency Room four times in the last year, thinking (as did the nurse on the phone) that I was having a heart attack (including left arm tingling, numb hands, and a feeling like a big gorilla was sitting on my chest, rapid heart beats, and shooting random pain). This could last for days or hours (hence my belief that some of it may have been Vit D related).

The cardiac sarc was not diagnosed with a resting Echo. All Emergency room tests (including blood tests, EKG, holter monitor, etc) were normal. The diagnosis came from a STRESS Echo as a result of a thallium scan which showed hardening of a specific area in my heart. The cardiologist felt the thallium scan was innaccurate, but then had to eat his words after the stress echo! The distinction between stress vs. resting Echos may not be important for your diagnosis, but it was for mine. As I understand (and my knowledge is limited) my cardiac sarc has not yet impacted function.

Good luck figuring out whether to take prednisone. It was a very difficult decision for me, as Trevor can attest. The poor guy got a hundred frantic emails from me as I went through the process! I am not unhappy that I did go on prednisone as I always saw it as a short term way of getting the inflammation under control and for peace of mind. However, I was disappointed to learn that it takes months before the prednisone "benefits" actually occur. For me, the chest pain, pressure, arrythmias, and the like stopped once my Vit D got down. I started with Vit D levels of 165 (with high normal being 62) for the 1,25 and 15 for the 25 serum tests. So, I was very toxic. And, this was a result of two weeks in Mauii (sunning shamelessly...something I will NEVER do again).

You will figure this out...it's scary diagnosing and fighting with an "established" medical system that does not have all the answers. You will decide the right thing. Go with your guts.

Best of luck!

Wendy
 
 Re: Heart Sarcoid
Author: wendy (---.stcgpa.adelphia.net)
Date:   04-24-03 09:29

Tom - Sorry to post again, but I just thought of something else...

The docs can never make a definative diagnosis of sarcoid without a biopsy (and even then there are other diseases, including fungals, that present with granulomas)... Open heart surgery for biopsy is radical treatment and unwarranted in my case. So, for me (likely you) it will be a process of ellimination.

The visual for my diagnosis consisted of visible white dots the doctor referred to as "scar tissue" within the wall lining in my heart near the mitrol valve. He could not be definative about whether it was "active" or "old" scar tissue. His main goal was to assess location and function. My "function" was within accepted normal range or what I like to think of as not needing intervention, as normal is so variable between individuals. Cardiac sarcoid scares doctors too, so if you do have visible scarring be prepared for them to want to put you on "aggressive" therapy. They discussed 60 - 80mg of prednisone for me. I held firm at "no prednisone" for two months, then finally (for reasons I described earlier) went on 15mg. I am now, gratefully, down to 10mg. The chest pain returned as I decreased the dosage to 10mg (over a three week period...to let you know how long it takes coming off, I reduced my daily dosage by 1.5mg per week), but the pain/pressure were more mild (I could sleep laying down and didn't have night sweats, as I did when I tried to go from 20mg directly to 10mg) because my VIt D was more under control. Depression has been my main complaint and irritability (my poor family).

My goal is to take 10mg every other day and minocycline on the opposite days, as I found taking them together very difficult. I obviously will also continue to strictly have NO added Vit D and limited sun exposure.

Anyway, best wishes

wendy
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-24-03 10:56

Wendy:

Your heart arrythmias, were they tachycardia, bradycardia or PACs/PVCs?

I had a resting Echo today - all looked perfect. According to info I found on web, Cleveland Clinic stated that "Sarcoidosis of the heart is almost always shows up on the echo as a decrease in the ejection fraction and a characteristic echocardiographic filling pattern. It in general does not cause PVCs."

So I was releived today that my echo, though not a stress echo, was perfect.

PFTs today were great as well. I don't have symptoms that interfere majorly with my day to day living, so maybe I will just take the wait and see approach.

-Tom
 
 Re: Heart Sarcoid
Author: John Power (---.proxy.aol.com)
Date:   04-24-03 15:15

Trevor,
I was diagnosed withn sarcoid in nov 2002 following transbracheal lung biopsy. bad chest x-ray and ct scan led to biopsy. At the time I was suffering with bouts of bradycardia with pulse rates down int the 30's and 40's as well as elevted ACE levels. Prednisone 60mg per da was initiated and within 1 month bradycardia wa s alleviated however palpitations still exist atested to by holter monitoring and subsequent echocardiograms. pred has since been weaned to 20mg per day and remainig wean wil b e slow accoring to pulm doc. i currently take diovan and will ve discussing with docs testing of vit d levels and minocin tx . is it advisable to start minoci while weaning off pred or should one wait to get off pres first. i am somewht concerned about the JH reaction that may occur if minocin can be started at this time. meantime i am eliminating vit d to the best extent i can from diet af limiting sun exposure.
thanks for info for even the docs admit there is very little knowledge out there.
thanks again for research and info. wll talk soo after next cardio visit.

John
 
 Re: Heart Sarcoid
Author: Helen Turner (---.cache.pol.co.uk)
Date:   04-24-03 15:38

Tom

I have a feeling that my diagnosis came about by accident because when I went to the operating theatre I was told that I had either an aneurism or a tumour in the left ventrical this had shown on a Gallium Scan (remember this is 16 years ago) when I woke in intensive care the surgeon asked if I could sign a release form because they had filmed the op and wanted to use it for teaching purposes. He then told me what they found was sarcoidosis and he had only ever seen this in a post mortem I was terrified, as was my family' no-one in the Hospital knew what the prognosis was It was just a case of High prednisilone and wait and see!!! I was told that they had taken a section of the ventrical for biopsy to be sent to Dr Fleming at Papworth Hospital he was doing some study on Cardiac Sarc. I really hope that you or anyone else ever has to go through anything like this It seems from reading the posts here that other ways of diagnosing Heart Sarc are being found.

Take care and keep strong.

Helen.T
 
 Re: Heart Sarcoid
Author: Kathleen Stuart (65.121.96.---)
Date:   04-24-03 17:00

Tom -

Just another "cardiac" weighing in - my symptoms since the beginning have been chest pain and shortness of breath; chest pain always in the same place - for almost 4 years now. The only test at the beginning that was positive was a stress thallium - which was positive both EKG-wise and radiologically. Other than that, my echo was fairly normal; subsequent EKG's were fairly normal (with some sinus arrhythmia) and mostly tachycardia.

I have been declared fit by multiple cardiologists, yet I still have chest pain, SOB and profound fatigue. My latest echo, almost a year ago, showed pulm hypertension and an enlarged left atrium - again, declared normal by the "experts" that be. I was told cardiac sarcoidosis was very rare, and therefore it was "unlikely" that I would have it. I was also told that it would affect ventricular rhythms, so again, I "probably" didn't have it.

My ACE was in the 80's, and my c-reactive protein has been elevated during the entire time - a definite sign of inflammation. I am currently taking beta-blockers for my heart symptoms, and the Minocin and Benicar regimen recommended in this site - and I am feeling much, much better.

First, I think that "cardiac" sarcoidosis is much more prevelant than the "experts" think - as Trevor notes, it is an inflammatory response, and obviously, from these multiple posts, occurs in more patients than "they" think. (I note "cardiac" because I agree with Trevor that sarcoidosis is sarcoidosis is sarcoidosis (to shoplift a phrase) and symptoms appear everywhere, thereby eliminating the need for "pulmonary" and "extrapumonary" monikers - and hopefully, eliminating the ever-present "ABNORMAL" sarcoidosis!!!)

Second, I personally begged for prednisone three years ago - I have a family history of sarcoidosis, and at the time, it was the only treatment we knew of...my doc agreed, and gave me high dose (60 mg) for several months. If I only knew then, what I know now....and I know my doc feels this way...he is concerned that the steroids I took have given me damage that will last the rest of my life. I think the hardest thing was going off of them - the excrutiatingly slow decrease (which is medically necessary, as some body systems shut down and need the opportunity to kick back in; it also can affect you mentally) - and the not feeling any better as the dose got lower, and not feeling any better once I was totally off of them. I understand now why that happened - but it was very difficult to go through.

As Belinda stated, the decision of what treatment to pursue is completely yours. I wanted to share my experience, and that while I felt somewhat better on prednisone, the drug has an effect that is like a "high", and there is no evidence that it actually medically helped me, and evidence that it did hurt me...As she suggested, doing your own homework and looking at all the alternatives will help you decide on a treatment you are most comfortable with.

Best of luck and take care,

Kathleen in Wyoming
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.biz.rr.com)
Date:   04-25-03 13:24

Does anyone know the percent of people with Cardiac Sarc that die of Sudden Cardiac Arrest? (Obviously this is a worse case scenario from what I have read, but have not found any numbers)

Thanx
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-25-03 13:46

Tom,
The info you need is in this study report

I sense that you are very worried about cardiac problems. Please understand that Cardiac symptoms are the easiest to control, and respond very well to ARB and 1,25-D level control, and, ultimately to antibiotic therapies. Every sarc patient needs to be careful, but worrying unnecessarily is only going to make things worse. Now that we know how to do it, you should focus on curing your sarcoid inflammation, and the cardiac problems will disappear with it.

..Trevor..
ps: Ypu might also be interested in reading this piece I wrote for CHEST about cardiac complications.
 
 Re: Heart Sarcoid
Author: Freddie (---.ipt.aol.com)
Date:   04-26-03 07:55

Hi Tom & Trevor

I am a 63 year old white male with sarcoidosis. I have had it since Aug 1972 but was not diagnosed until Feb 1982. I have sarcoidosis in several organs. I have it in the heart. I wanted to say something about the prognoses of cardio sarc. I read in a medical book from Marshall University that 4 out of 6 would die a sudden death. I always told my family doctor that I was going to be one of the 2 that lived. That was back in the 1980's. I had 4 by passes March 20, 2001 and a pacemaker put in Nov 8, 1995. Also Jan 20, 2003 I had to have a cardioversion done. Then my pacemaker went bad and had it replaces on Feb 27, 2003.

Your friend in sarcoidosis
Freddie
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-26-03 08:08

Freddie,
Welcome to SarcInfo.com. Many of us here have been pretty seriously ill, but we have survived, and are now healing.

Whatever sustained us to this point is now less important than the opportunity to regain our health. Please read the tutorials the the top of the page and ask questions if you don't understand anything. Sarcoid Inflammation can now be cured, whichever organs or muscles the microbes might be hiding within. But it can't be done overnight, and you will need a caring Doc to work with you in order to implement the therapy. Welcome, Freddie, and relaaaax... you have already proven you are a survivor...

..Trevor..
 
 Re: Heart Sarcoid
Author: Freddie (---.ipt.aol.com)
Date:   04-26-03 11:13

Hi Trevor

This is Freddie. I think you have great and correct information at this site. Things in your informatin goes a long with my history. When I was born back Sept 1, 1939 I was on mother's milk but developed Ricketts. Then I was exposed to TB two times, once in 1953 when my sister had TM meningitis. Then in 1968 I was in the National Guard I let a budy drink from my water can. When we got back from sumer camp that year he had TB. But to this day I have never tested positive for TB. Also on the sun light I had read in 1982 in some of the doctor's books that I could fine that you should stay out of the sun light due to the "D". Once I was invited to a med school near Dayton, Oh to give a talk to student doctors on sarcoidosis. But I did not get to go because something else came at the school and it had to be cancelled. The PA bagged me to make a vidio tape to send to them but I was working at the time and did get to go.

My blockage may be due to the sarcoidosis because right after I had mine done ( I had them done at the Cleveland Clinic) Cleveland Clinic came out with a report about blockage in people with good fat readings and still had blockages were due to the infammation in the blood. So I fit that too.

Your friend in sarcoidosis
Freddie
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-26-03 13:18

I apologize to all for my over-reaction to "possible" cardiac sarc. My reaction stems from the doc telling me to "take 60mg of Prednisone cause your palpitations suggest to me (without any testing) that you may have cardiac involvement", reading about all cases of cardiac sarc usually end up in sudden death within 2 years, and none of my three docs want to even do the basic blood tests requested on this site.

I have been frustrated and worried, and I agree - most likely without just cause to be worried. I will do my best to keep positive here from now on. (This is most likely why I have palpitations (PACs), the anxiety I allow myself to generate.)

Sorry again to all.

-Tom
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-26-03 17:00

Tom,
I have no doubt that high dose corticosteroid therapy that is so often prescribed by physicians faced by Cardiac Sarc contributes to the poor prognosis for the patients.

I have one of the best Docs, and I recall a big argument I had with him the time he first heard a heart defect through his stethoscope. But he listened to me, and suggested I could try Diovan (an ARB) and see if it helped stave off the pred a little longer. And the rest is history...

..Trevor..
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-28-03 17:33

Trevor Wrote:

"In fact, the ARBs were first prescribed for me in 1999 because some early signs of cardiac sarc involvement had appeared."

Trevor, what were your early signs of cardiac sarc involvement? I'm trying to figure out if my new Pulm Doc is correct in his "guess" about me.

Thank you,

-Tom
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-28-03 19:28

Tom,
Doc could hear a "fourth phase" noise through his stethoscope indicating the heart was under excessive pressure (he said).

At that time my Blood Pressure was 155/98 ish...

This week my blood pressure hovers around 105/60 ish...
And Doc hasn't heard any noises ever again, not like he heard the first time. My bloodwork (Triglycerides) is OK again. My chest sounds fine. No lymph nodes are unusual (I still have them all).

I have a clean bill of health. He says that as long as he doesn't look at my Xray - which shows 25+ years of fibrosis, and if he doesn't look at the 12 inch biopsy scar on my back, he would never know I ever had anything wrong with me...

..Trevor..
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.twcny.rr.com)
Date:   04-29-03 19:31

Trevor:

Praise to God that your health is so good after your start with Sarc.

I have noticed something, my BP used to be 120-125 over 80-85 but lately it has been averaging 116/77.

Will these ARBs (Benicar) lower it more?

-Tom
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-29-03 21:52

Tom,
Yes, the ARBs, together with their improvement of the patient's health, do lower Blood pressure. The symptoms you feel, however, are more driven by the Sarc and Vit D than by the low Blood Pressure itself.

My own has been down to 95/48 or so, at one time, I felt the same "wonderful" that I always do these days... Patients who started with low blood pressures, routinely have much lower pressures than mine. Ultimately, of course, once the microbes have all gone, you should no longer need the ARB.

The graph of average BP reduction vs dose is in the "New Treatments Emerge.." paper, which I have reproduced below

http://clinmed.netprints.org/content/200301/images/medium/2003010001v1/F3/fig3-ah.gif

You can see a drop of about 8 mm HG in diastolic, and 14 mm Hg in Systolic is expected from the Benicar alone. As it suppresses the sarcoidosis its effect can be even more profound (especially if you were too high to start with).

..Trevor..
 
 Re: Heart Sarcoid
Author: Freddie (---.ipt.aol.com)
Date:   05-02-03 06:22

HI TREVOR AND TOM ROGERS

I just want to add my B/P readings too. I have had low B/P since the 1980's. On sunday I was having problems so I took my B/P and it was 47/26, 54/30, 56/29, 53/29, 57/28 so I got up and walked around for about 20 mins. and then it was 80/48. I was at the lung doctor's office on tuesday and it was 90/58.

your friend in sarcoidosis
Freddie
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-02-03 06:30

Freddie,
Are you taking any medication for your heart, or purely relying on your pacemaker to keep the ol' ticker running?

..Trevor..
 
 Re: Heart Sarcoid
Author: Freddie (---.ipt.aol.com)
Date:   05-03-03 06:56

HI TREVOR

I am sorry that I did not get back to you yesterday, I had to see my family doctor and surgon about my pace maker. I also had 2 blood work ups.
I take the following that may effect the B/P -- FUROSEMIDE 120MG A DAY, WARFARIN 5MG PER DAY, DIGITEK .125MG PER DAY, ACCUPRIL 40MG PER DAY, COREG 50MG PER DAY. My family doctor does not like the Coreg but the cardiologist at the Cleveland Clinic has me on that. My family doctor says that the Coreg is the one making the B/P so low. But I have had low, but not this low, since the 1980's. I also have CHF. But last June my ejection fraction was down to 15% and was still doing well. The cardiologist at Cleveland said I could walk if it was that low. But it was back up to 25% in Dec. They will do another echo in Sept.

Your friend in sarcoidosis
Freddie
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-03-03 07:14

Thanks Freddie,
There is a lesson in Freddie's data for us all.

Blood pressure is written as systolic pressure/diastolic pressure--for example, 120/80 mm Hg (millimeters of mercury). This reading is referred to as "120 over 80." High blood pressure is defined as a systolic pressure at rest that averages 140 mm Hg or more, a diastolic pressure at rest that averages 90 mm Hg or more, or both.

Taking ARBs will lower somebody's high blood pressure. Does that mean they are no longer hypertensive? Not really, because if they stop taking the ARBs then the high blood pressure will return.

You can see that Freddie's blood pressure is VERY low, approx 50/30.
This would make any doctor panic, except that they know Freddie is on cardioprotective drugs which have modified his BP, and they take this into account.

So when Doc says to you that if he prescribes you ARBs then your blood pressure might drop "too low" and you will "end up fainted on the floor" you now have the data to challenge that notion.

The truth is that we just don't know very much about Blood Pressure, and even less about how Angiotensin II affects it. If you need ARBs to control your 1,25-D resulting from your Sarcoid Inflammation then you will be able to work out how to manage your blood pressure, even if it falls a bit lower.

There is nothing magical that happens at 80/50 or even 50/30. It all depends...

Thanks Freddie, for sharing that data with us.

..Trevor..
 
 Re: Heart Sarcoid
Author: Debbie Long (---.clsp.uswest.net)
Date:   10-11-03 12:32

Trevor,

I was thrilled to stumble upon your site. I'm in desperate need of help. My husband, who is 53, was diagnosed with severe ventricular tachycardia 7 years ago and at the time, had an ICD implanted. The v tach became worse, resulting in his first ablation about 2 years ago. He has since had 3 more, and is to undergo another one in a few weeks. The v tach has become so difficult to control that he receives frequent shocks from his device. The doctor who performed the last ablation in August did a biopsy, confirming cardiac sarcoidosis. At this point, there is some talk of a heart transplant. He's being treated by doctors at Nat'l Jewish Hospital in Denver. They are supposedly experts in treating auto-immune diseases, yet most of their experience is in treating the lung version of sarcoid. He is currently taking 40 mg of prednisone, and it's making him miserable. Because it interferes with his sleep (he can only sleep about 3-4 hours per night), the doctor is thinking about taking him off the pred and putting him on some other type of steriod.

I would like to be able to pass your info and insight on to his doctors, but I don't even know where to begin. I guess to start, he needs to have a Vit D test to determine the level of Vit D in his system? After that, what should be done next? Can you please guide me through this process?

Are most doctors willing to follow alternative therapies, rather than the standard steriod treatment?

Thanks for any help and advice that you can offer us.

Debbie
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-11-03 14:19

Debbie,
Yes, if you look at the FAQ document at the top of the page it lists each step. The first is to try and establish the level of D metabolism dysfunction, because if it is there then it needs to be attended to.

The majority of doctors seem to be unwilling to accept a bacterial pathogenesis for Sarcoidosis. It was interesting to see the same arguments raised last week when researchers reported that Alzheimers seemed likely to succumb to antibiotics.

However, the longer the disease goes untreated the more widespread the microbes become and the Herxheimer management becomes more of a problem.

Once a patient with extensive cardiac sarcoid involvement is placed on prednisone treatment, their life expectancy averages 5 years (ask Doc about it). I really find it hard to understand why any therapy as ineffective as this would be regarded as a satisfactory solution by the profession, but that is what happens. The problem is that the prednisone gradually loses its ability to suppress the immune system, which is being hyperactivated by the microbes living within it. It is just a matter of time before 40mg is not enough, then 60, then 80 and so on. At some point everything comes crashing down.

One Cardiac SarcInfo'er just got a clean MRI at Johns Hopkins after 6 months of (at times) worrying and painful antibiotic therapy. She now has her life back. If Dr Lee Newman (from National Jewish) were to call me I could put him in contact with the physicans involved with this case. My phone number is on the top of most of the "Papers for Physicians".

..Trevor..
 
 Re: Heart Sarcoid
Author: Debbie Long (---.clsp.uswest.net)
Date:   10-13-03 19:44

Trevor,

Thanks for this info. My husband has just gone through such a miserable weekend that he has decided to end the prednisone treatment. He's been on 40 mg for about 6 weeks. His doc at Nat'l Jewish has told him about another drug he's considering putting him on - I don't yet know what that drug is. Might it be metheltrexate? I gather that this is just about as bad as prednisone.

You had mentionned in a previous e-mail that by the time he has decreased his dosage to 20 mg/day, he'll be able to start the antibiotic therapy. Hopefully, by then we'll have found a willing doctor. We intend to talk to Dr. Lee Newman at Nat'l Jewish. Thanks for the referral.

There is some rather vague talk of a heart transplant for my husband since his ventricular tachycardia is so out of control. From all that I've gathered from this site, the bacteria is so deeply imbedded in his system that wouldn't it most likely attack a new heart?

Thanks for this wonderfully informative site. There's nothing else like it on the web.

Debbie
 
 Re: Heart Sarcoid
Author: Charlie (---.nas19.portland1.or.us.da.qwest.net)
Date:   11-10-03 05:33

>>> Message from Administrator:

'Charilie' left an advertisement here for a dietary supplement. It has been removed.

Cardiac sarcoidosis is one of the most common causes of death in this community. IMO, If you have sarcoid inflammation which has spread to your heart it is not time to be messing about with herbal supplements.

..Trevor..
 
 Re: Heart Sarcoid
Author: Diana (---.cache.pol.co.uk)
Date:   01-14-04 07:05

I know that levels of 1,25-D that are too high can cause arrhythmia, and also that it is possible to have sarcoidosis in the heart causing arrhythmia by disrupting electrical pathways. Do these two situations always occur together, or is it possible to have 1,25-D arrhythmia without having changes in the cell structure of the heart? Without a biopsy, is it possible to tell if it the heart itself that is the problem? Do the different situations result in different types of arrhythmia, for example?

Diana
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-14-04 07:34

Diana,
The two pathways are almost certainly equivalent. High paracrine concentrations of 1,25-D near muscle fibres is believed to cause a change in the Ca++ ion flux in the muscle, creating the problem.

You don't want a biopsy, believe me IMO, the best way to deal with the problem is to "make it go away".

Z+M is particularly effective at exacerbating heart arrhythmia, just as it is particularly affective at getting rid of the locally inflamed tissue, leaving the muscle to do its job properly. I wish you could have one without the other, but... At least Benicar can give you an edge in taming the endotoxin-induced arrhythmia.)

There are a number of tests that cardiologists can run to try and characterize what is going on at the cellular level in the tissues and fibres of the heart. Unfortunately we know rather more about the macro description of the heart (what you can see with the eye and through a microscope) than we do about what goes on at a cellular level. However, this paper from PubMed might help a little.

..Trevor..
 
 Re: Heart Sarcoid
Author: Nick (---.l4.c3.dsl.pol.co.uk)
Date:   01-16-04 01:28

Hi Trevor,

couple of questions if I may, preceded by some background.

I've been on mino for 8 months or so with only moderate herx (D ratio of 3.5). I have cardiac sarc and have been coming down the pred to 9mg/daily. However, recently I've had a terrible flare up and can no longer walk across the room without serious arrythmia. I've been off the mino several weeks now so it's definitely not herx, more likely the sarc returning (I always have recurrences when I get under 10mg of pred). No sun exposure and next to no Vit D ingested.

Unfortunately, like a lot of other sufferers in the UK. I've found the docs are very unwilling to prescribe ARBs. I've tried half a dozen and all have responded in the negative. I've run out of options so have had to ramp up the pred to 15mg while I ride this.

My questions are:

1) are there any other sources that you (or anyone else) knows of that might distribute benicar/olmetec? I've checked pretty much every internet drug company going without success (even wrote to Sankyo saying I would sign a disclaimer but no luck).

2) what exactly is the relationship between blood pressure and inflammation? My BP hovers between 120/75 - 150/90 and it would be good to know if variations might indicate the status of the sarc.

many thanks,

Nick
 
 Re: Heart Sarcoid
Author: Nick (---.l4.c3.dsl.pol.co.uk)
Date:   01-16-04 01:28

Hi Trevor,

couple of questions if I may, preceded by some background.

I've been on mino for 8 months or so with only moderate herx (D ratio of 3.5). I have cardiac sarc and have been coming down the pred to 9mg/daily. However, recently I've had a terrible flare up and can no longer walk across the room without serious arrythmia. I've been off the mino several weeks now so it's definitely not herx, more likely the sarc returning (I always have recurrences when I get under 10mg of pred). No sun exposure and next to no Vit D ingested.

Unfortunately, like a lot of other sufferers in the UK. I've found the docs are very unwilling to prescribe ARBs. I've tried half a dozen and all have responded in the negative. I've run out of options so have had to ramp up the pred to 15mg while I ride this.

My questions are:

1) are there any other sources that you (or anyone else) knows of that might distribute benicar/olmetec? I've checked pretty much every internet drug company going without success (even wrote to Sankyo saying I would sign a disclaimer but no luck).

2) what exactly is the relationship between blood pressure and inflammation? My BP hovers between 120/75 - 150/90 and it would be good to know if variations might indicate the status of the sarc.

many thanks,

Nick
 
 Re: Heart Sarcoid
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-16-04 02:40

Nick,

They know about Olmetec at St. George's Hospital in London. See page 358 of this text. You might call there.

Olmetec is a powerful new option in the battle against high blood pressure. Note the information in the article stating that GPs who help their patients achieve blood pressure goals will be financially rewarded.

You will probably also be interested in this news article carried by Reuters: Hypertension may be inflammatory disease-study. Here is another article, this one about Inflammation and Atherosclerosis with excellent graphics. You will recognize the inflammatory process and cells we discuss on SarcInfo.

Best wishes,
Belinda
 
 Re: Heart Sarcoid
Author: Deb (---.client.comcast.net)
Date:   02-10-04 19:41

Have any of you that have had open heart surgery (& hopefully that's not many of you), had inflammatory reactions in the ribs & cartilage?

I had surgery (birth defect - not sarc related) and now have been diagnosed with arthritis in my ribs & cartilage. I was diagnosed with sarc 5 years ago, and am wondering if it is really sarc that is causing the inflammation.

Thanks,
Deb
 
 Re: Heart Sarcoid
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-10-04 20:32

Hi Deb,

Welcome to SarcInfo. It's certainly possible that your open-heart surgery stimulated sarcoidosis inflammation in your ribs and cartilage. IMO, that is more likely than arthritis.

You can beat that pain with the Marshall Protocol. Please read the Patient Tutorials and Papers for Physicians at the top of the page. Also the starred threads.

Let us know if you have any questions about how to get started on the road to recovery.

Meg
 
 Re: Heart Sarcoid
Author: Ed (---.biz.rr.com)
Date:   02-12-04 11:13

I just got a report back from an Echo that was done last month.It showed everything normal except for borderline diastolic noncompliance and equalization of the mitral in flow pattern. I do have a history of Cardiac Sarcoid.I reported my Vit D levels to you last week (which were both high).
My question is,could this noncompliance problem be caused by high Vit. D , a Sarcoid issue, or both?
By the way, I just started taking Benicar today.I will keep you informed as to my progress.
Thanks,
Ed
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-12-04 13:31

Ed,
The inflamed tissue in proximity to muscles causes those muscles to lose their strength. Read our paper on Cardiac issues, and take a look at reference 13.

..Trevor..
 
 Re: Heart Sarcoid
Author: J.B. (---.proxy.aol.com)
Date:   03-14-04 15:32

Can a person with sarcoid of the lungs develop sarcoid of the heart? If so, how often does this occur? I have sarcoidosis of the lungs and crohns disease. I am presently having pain in the middle of my chest and was wondering if it was my heart. I have an appointment with my doc in two weeks.
 
 Re: Heart Sarcoid
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-14-04 16:09

J.B.,

Your question tells me that you have not done much reading on this website. Sarcoidosis is a systemic disease. That means that it can affect any part of your body, including your heart. When you treat your pulmonary sarcoidosis the safe, effective way with the Marshall Protocol, you will be treating all the sarcoidosis in your body, even that which does not have an official label. All sarcoidosis patients should consider the fact that they may have undiagnosed cardiac involvement. It is one of the reasons that we insist on following the Marshall Protocol exactly to avoid severe Herxheimer reactions

Meg
 
 left ventrical dysfunction
Author: kevin (---.164.48.187.Dial1.Denver1.Level3.net)
Date:   07-11-04 17:09

i need to know if a four doppler color flow echocardiogram can check for left ventrical dysfunction.

thanks kevin
 
 Re: Heart Sarcoid
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-11-04 18:12

Hi Kevin,

Welcome to SarcInfo. Your question is beyond the scope of my expertise. But your cardiologist should be able to answer it.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links or starred threads on this site.

Meg
 
 Re: Heart Sarcoid
Author: val (---.proxy.aol.com)
Date:   08-08-04 21:10

my husband has the cardiac sarcoidosis. he should have died about four times ago he has a icd inplanted so it will shock his heart back into rythm
the last time it went off his heart rate was 297 and he passed out, then the icd shock it back to rythm. I need to to know more about the desease
he is currently on prednisone 20mg. daily and metholtrexate. we live one day at a time he is only 45yrs old. I need some answers .
 
 Re: Heart Sarcoid
Author: linda1949 (---.proxy.aol.com)
Date:   08-08-04 21:50

I was diagnosed with Sarcoid in 1986. The Kveim was used as the delineating test after other tests indicated it was that or.Hodgkins.

I have been up and doen since then with pulmonary as well as ocular and every joint and muscle I did not know I had. IN August of 2000 I complained of chronic pain through my back and shoulder blades no wone could find anything. In August of 2000 an echo and other tests indicated I had suffered a heart attack. A catherization said I did not. I indicted that I thought it was cardiac sarcoid and they told me I was nuts. My ejector fractor was 35% It went back up without treatment through 2003 to 50%..In May of this year I started again eith the shoulder painns and burning through the sternum. Thallium stress tests indicated I was down to 25% and had a blockage. They wanted to do a catherization and a biopsy. I refused the biopsy. The catherization showed no additonal blockages were apparent. They did a cardiac MRI and confirmed a fibrosis of the heart muscle. Now they indicate it is cardiac sarcoid, four years after my own dignosis. Now what? They do not want to do anything. They say it will go into remission again as it has in the past. I really feel like it is going to kill me soon. What do I do?

Linda

hospitals of no relief, Columbia Pres and Robert woods johnson
 
 Re: Heart Sarcoid
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-08-04 21:50

Hi Val,

Welcome to SarcInfo. I'm sorry to hear that your husband is so ill. Thank goodness for the internal defibrillator. It's ability to correct arrhythmias helps manage a crisis but it is still only a 'bandaid' approach to a systemic disease. Continued inflammation will weaken his heart so it is imperative to treat the cause of the disease.

The inflammation in your husband's heart will continue to increase despite (and because of) the medications he is taking. Prednisone suppresses the immune system and allows the tiny, cell-dwelling bacteria to multiply. Methotrexate does little to eliminate the bacteria and has serious side effects.

IF you can find an open-minded cardiologist who is willing to follow your husband closely with the Marshall Protocol, he can recover. Ask your husband's doctor to read the papers for physicians and call Trevor Marshall.

If you need a referral for a second opinion, let us know. Good luck.

Meg
 
 Re: Heart Sarcoid
Author: Pippit (---.asm.bellsouth.net)
Date:   08-08-04 23:10

Hi Linda,

Welcome to Sarcinfo. Please read and print out the articles at the top of the page to give your doctor. Whichever doctor thought you were nuts was not very knowledgeable. Cardiac Sarcoid is hard to diagnose unless it's really advanced but it is not as uncommon as many doctors believe. Many people don't even know they have it until it's diagnosed upon autopsy. You were right to refuse the biopsy. All that is really necessary is to ask one of your doctors to do a therapeutic probe (try the Minocycline and Benicar and if you have a temporary worstening of your symptoms caused by bacterial die-off, then you know that you will respond to this treatment). This is called herx or herxheimer, and it only happens in the presence of bacteria.

Many people have their first clue about cardiac involvement when they feel heart arrythmias as they start the Minocycline.

If you have a GP that is willing to prescribe the meds that usually works better than having a specialist manage your care. All that's required in a doctor is a willingness to learn and to be flexible.

If you are unable to get one of your current doctors to put you on this protocol let us know and we can give you some names of doctors who are likely to be more amenable to it.

You've come to the right place. This is the only treatment that addresses the source of the disease and pulls it out at the root.

After doing some reading let us know if you have any questions.

Pippit
 
 Re: Heart Sarcoid
Author: Becky (---.dsl.emhril.ameritech.net)
Date:   08-25-04 23:04

Hello ...
I have a long history of sarcoid with multiple organs involved. Recently chest pain has hit, left substernal with palpitationa, along with numbness in left arm. (I do also have multiple herniated disks which could explain numbness.) Today I had stress echo and am very, very happy that it is normal!!!!! This is a major relief!

However, I also remember reading something recently about cardiac sarcoid and use of MRI as diagnostic, as cardiac function can actually IMPROVE during stress testing for those with sarcoid. Has anyone seen this citation and/or can corrorborate this strange bit of info?

My BP has been relatively low for a couple of years now (110/60) during this latest active phase, with a resting pulse around 90-100. Today, med staff had a very difficult time getting my heart rate to "stay up" with the injections (can't do treadmill), and after several trials, added another drug to boost heart rate. This just in case it is significant.

Thanks for any info you may have on this.
 
 Re: Heart Sarcoid
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-26-04 11:06

Hi Becky,

Welcome to SarcInfo. With the symptoms you mentioned, I can see why you are concerned about cardiac sarcoidosis. I'm glad that your doctor is ruling out cardiovascular disease. An MRI is unlikely to reveal cardiac sarcoidosis involvement. Only a biopsy can do that for sure and we do NOT recommend a cardiac biopsy. It's much too dangerous and unreliable.

As you well know, sarcoidosis can affect any part of the body and usually more than one body part is affected. It doesn't really matter where the sarcoidosis inflammation is because the only effective treatment, the Marshall Protocol will reduce it everywhere.

I encourage you to get your D-metabolites checked. This is a simple blood test but it is the most important test you can do. If you have cardiac involvement, your 1,25-D will be very high. Then your doctor would want to proceed very carefully with the MP meds to avoid provoking a cardiac Herxheimer reaction.

I don't know the significance of the recent change in your heart rate. Your B/P at 110/60 is considered normal, not low. By the new standards, anything over 120/80 is considered prehypertension. Everyone in the medical field is getting accustomed to these new values and we are finding that very low B/Ps are not a cause for concern.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: Heart Sarcoid
Author: Debbie K (64.88.86.---)
Date:   09-20-04 07:56

Becky,

I'm enclosing a link from the Clevland Clinic that supports what you're saying in regards to a thallium perfusion scan. In a thallium perfusion scan the defects of cardiac sarcoid often improve during stress.

(faulty link deleted by moderator)

There is also reseach that says people with cardiac sarcoid can have a false positive on a thallium perfusion scan. This is what happened to me. I ended up having a heart catherization which turned out to be negative for coronary artery disease; however, they did find some left ventricle dysfunction which could be due to the sarcoid. It's still being investigated with another non-invasive test. I hope this article helps you.

Debbie
 
 Re: Heart Sarcoid
Author: Debbie K (64.88.86.---)
Date:   09-20-04 08:23

Becky,
My apologies, I guess that link will not get you to it. That's where I was when I read it so I just copied and pasted the URL. If you will copy and paste the following in GOOGLE you will come up with the article. It will be about the third article. It's called "Cardiac Sarcoid A Cause of Infiltrative Cardiomyopathies"

Go to GOOGLE and type "cardiac sarcoid AND Cleveland Clinic" That should get you to the article. Unfortunately, I'm not typing this from home or I would be able to get you there easier.

Sorry for messing up your board, Trevor.


Debbie
 
 Re: Heart Sarcoid
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-04 08:43

Debbie,
Good to hear from you again.

Left ventricular myopathy is the classic presentation of cardiac sarcoidosis. I gave some of the reasons in a Letter to the Editor in CHEST a year and a half ago
http://www.chestjournal.org/cgi/eletters/123/1/18

I now know that cardiac sarcoidosis is not necessarily degenerative and is not necessarily fatal. Many of the 'SarcInfo Graduates' have beaten cardiac manifestations. Yet the average life span for patients who are diagnosed with cardiac sarcoidosis, and then treated conventionally, is still only five years beyond the definitive diagnosis.

If I were you I would not be waiting around for that definitive diagnosis. You suggested a paper from the Cleveland Clinic, but have you thought to ask Freddie Ash about how much the Cleveland Clinic have understood what to do about Freddie's cardiac sarcoidosis?

We have an incredible research tool available to us with the Internet. We should use it not only for accessing the papers of researchers and physicians, we are now able to seek out folks who can attest to, or reject, the effectiveness of the therapies they promote.

..Trevor..
 
 Re: Heart Sarcoid
Author: Debbie K (---.dialip.mich.net)
Date:   09-20-04 19:08

Trevor,
Thank you for the article. I read it with much interest. I did go to the University of Michigan to see a specialist the other day. Believe it or not, I was very impressed with the physican. I only went for a second opinion after my pulmo thought the shortness of breath (which has gotten much better) was being caused from anxiety. I knew it was not. My pulmo was right that my lungs are doing great and not causing the problem. In fact, he was the one who ordered the stress test. As far as my lungs go, my FVC was 93 % and FEV1 was 102 %. My DLSO was only mildly decreased at 72 %. My thallium scan last summer made my pulmo refer me to a cardiologist who did the heart cath. No CAD was found and my left ventricular end diastolic pressure was only slightly elevated at 19 mmHG. My pulmonary artery pressures were nomal. My resting BP is always normal but exercise tests show I have exertional hypertension. My cholesterol is well within the limits. Most of the SOB was during the summer and exercise related. It has settled down quite a bit, but I did want to get another opinion from someone who did specialize in the disease.

On Wednesday I go for two more stress tests. I chose to do both the same day because the hospital is quite a distance. Plus, I've already missed four days of school with more to come! I will be having a technetium pyrophosphate scan along with a stress echo. Then I will see the doc in about five or six days after that.

I have researched cardiac sarc endlessly since the summer. I KNOW what you are saying about the five years is true. From my research I am almost convinced that I might have restrictive cardiomyopathy caused by sarcoidosis. I could be wrong though. It wouldn't be the first time. The sad thing is, even if these tests come back negative, it doesn't rule out sarcoid. We both know biopsies for cardiac sarcoid are practically useless.

You're doing a wonderful job with your site. Just for the record, there is a VERY GOOD article about cardiac sarc if you do a search at GOOGLE and type in Cardiac Involvement in Sarcoidosis. It comes up as the first article. I don't know why I have lost my ability to get the right URL's up, but they just are not working for me.

Also, did you or someone else say that Dr. Baughman is treating someone with the MP? I thought I read that in a post a very long time ago. If that is the case, my specialist my be a little more opened to it.

Take care and keep up the good work.

Debbie
 
 Re: Heart Sarcoid
Author: Meg (---.188.248.238.euc.wi.charter.com)
Date:   09-20-04 20:26

Debbie,

You said that your breathing was worse during the summer. Many sarcoidosis patients report increased symptoms related to sun exposure.

I hope that the two new tests you are to have will convince you that your sarcoidosis needs to be treated.

Best,

Meg
 
 Re: Heart Sarcoid
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   09-20-04 21:08

Hi Debbie,
I hope your physician will treat you with the MP. About two years ago, I was very troubled with heart pappitations and frightening chest pain. From and EDG, I progessed to an echo then a dobutaming echo. When the results were 'normal' and the pain and palpitations contunued, I had a cardial cath. The too was normal.

Not until I was on the Marshall Protocol, did those symptoms leave. I no longer suffer thos symptoms.
Good luck to you, Caroline
 
 Re: Heart Sarcoid
Author: Debbie K (---.dialip.mich.net)
Date:   09-21-04 17:01

Caroline and Meg,
Thank you both for your input and concern. I appreciate it.

Debbie
 
 Re: Heart Sarcoid
Author: Deb (---.lgca.org)
Date:   09-24-04 10:03

I will be starting the Marshal Protocol next week and was reading this site and have a question. My doctor gave me the Benicar and is concerned about my blood pressure and may not give me the rest of the Protocol unless everything seems OK. My normal blood pressure is 120/70.

My question is regarding cardiac sarcoid. I have had chest pains, tingling in the arms, shortness of breath, etc... for 20 years and they have always checked my heart (heart disease runs in the family)
However, the holter monitor & EKG's showed nothing (done several times over the last 20 years) and several years ago they did a stress test which I failed miserably and they did a heart cath. Said my heart was great! I have pulmonary sarcoidosis so my pulmonary did a test to check my heart muscle (forgot what it was called) and all was OK. Does this mean that sarc is not in my lungs. I know it really doesn't matter because the Marshall Protocol will kill all but I was just curious.

I have ordered my sunglasses and have my blood pressure monitor at the ready. I am so happy to have found out about this procedure.
 
 Re: Heart Sarcoid
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   09-24-04 12:45

Hi Deb,
When I began benicar, my physician gave me samples. I kept track of my B/P and titrated to the recommehded dosage over about three or four days. I telephoned him with my B/P notes which was a relief to him. Normal for me is about 125/75.

I really understand your concern regarding cardiac sarcoidosis because at one time I shared that worry. I experienced frequent chest pain, pressure and discomfort, and additionally, heart palpitations. My father passed away of CHF after two bypass surgeries, both brothers have had bypass surgery, my paternal grandfather died of a massive MI at 56, which is now my age. I've had echo's, dobutamine echo, and a cath. My heart is fine. Further, after following the MP, I no longer have ANY cardiac symptoms.

Some examples of how sarcoid in your lungs may be found: chest X-ray, CT, broncoscopy. But you are corrent that the MP will take care of lung involvement.

I think you will be happy with the Noir customer service and shipping. Start keeping track of your B/P now before you start.

We are happy to have you here!
Caroline
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   09-24-04 19:16

Deb,

With a blood pressure of 120/70, you should have no trouble implementing Benicar. We recommend that you start at the full dosage of 40mg every six to eight hours to avoid problems. With your history of cardiac symptom, I hope your doctor will allow you to take the ideal dosage of every six hours and increase to every four hours if you get intolerable cardiac symptoms. It is the only effective treatment for a cardiac Herxheimer reaction.

Your doctor has ruled out cardiovascular disease with the tests that were done. That means that your coronary arteries are clear and your heart is getting a good blood supply.

Cardiac symptoms without cardiovascular disease in a patient with a diagnosis of sarcoidosis indicates sarcoidosis inflammation in the tissues of the heart. This is not easily picked up with testing.

Belinda has found some interesting references about the effects of Th1 inflamamation on the heart muscle that you doctor might be interested in.

Angiotensin converting enzyme and the arrhythmogenic action of angiotensin I: cardiac cell membrane as a site of angiotensin I conversion.
Regul Pept. 2004 Sep 15;121(1-3):83-8.
PMID: 15256277 [PubMed - in process]

Evidence is presented for the first time, that Ang I is converted to Ang II at the surface cell membrane in cardiac muscle with consequent generation of cardiac arrhythmias which are elicited by Ang II.

The same author has an earlier article which suggested that the activation of the cardiac renin-angiotensin system regulates inward calcium current and myocardial contractility, an effect that varies with the species.
Intracellular angiotensin II regulates the inward calcium current in cardiac myocytes.
Hypertension. 1998 Dec;32(6):976-82.
PMID: 9856960 [PubMed - indexed for MEDLINE]

Marshallprotocol.com has an Urgent Problems Only forum that you can use (right after you call your doctor) if you develop any worrisome symptoms. We will respond very quickly to any post in this forum.

Best,

Meg
 
 Re: Heart Sarcoid
Author: Lottie (---.proxy.aol.com)
Date:   09-24-04 22:37

Deb,

I am certain that I have Cardiac Sarcoidosis.

I have had many bouts of tachycardia (rapid heart rate), chest pains, PVC's (skipped beats), and other irregular heart beats. I first learned that I did have a slightly prolapsing mitral valve which, I was told at the time, could cause all of those problems.

When I was first diagnosed with Sarcoid in 1999, a echogram of my heart showed pericardial fluid (fluid in the sack around the heart) and my left ventricular wall was thickened. After about two years on Prednisone, I had a "normal" echogram of my heart. Two and a half years later, I was starting to have more of my tachycardia, chest pain, irregular beats, etc. Another echogram showed fluid around the heart, and the left ventricular wall thicker than in the first one! And, it also showed that I also have a small amount of regurgitation (blood flow in the "wrong" direction) through my mitral valve.

I now know that Mitral valve problems can also be a result of inflammation from Sarcoidosis.

I started off with 40 mg of Benicar every eight hours, and now take it every six hours.

I am now off Prednisone, and have been on Benicar for several months. My original blood pressure was ~120/80, and has dropped as low as 75/45. I only felt a little lightheaded occasionally. And, when it was 80/50 at my doctor's office, he reminded me to get up slowly, and don't fall down. It's now staying about 100/60.

I'm very glad that you are going on the Marshall Protocol, it sounds as if you'll benefit greatly from it!

*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: Heart Sarcoid
Author: Debbie (68.73.190.---)
Date:   09-25-04 08:39

I so thankful to all of you for your input. I have been taking my blood pressure and the glasses should come next week. My mom had a triple bypass in her early sixties and heart disease is on her side. My dad died of lung cancer this year and he has had many brothers die of the same disease so I wonder if they to have or had undiagnosed sarcoid. My mom's grandmother had rheumatoid arthritis and died in her late 50's.... I will start the Benicar tomorrow...... Thanks again for easing my worries. It is very comforting. Deb
 
 Re: Heart Sarcoid
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   09-25-04 10:58

Hi Deb,

Yes, family is at higher risk. I've wondered on and off about a grandmother whose "cancer' could never be tracked down after multiple surgeries. I will never know. At least we now have an answer for us and the generations to follow.

Keep us posted on your progress, Deb!

Caroline
 
 Re: Heart Sarcoid
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-11-04 09:59

JAMES POSTS THE FOLLOWING:

Author: James Fethiere (fw11v.EMBL-Heidelberg.DE)
Date: 10-11-04 07:06

Hi,

we are getting desperate. My sister in law has sarcoidosis, and the high doses of prednisone is ineffective. Now they want to try ACTH, but some years ago she has part of her pituitary removed,a nd with all these prednisone treatment (she's been on it for quite some time now), I wander why they want to try that instead of going directly to the immunosupressants. The story is a bit complicated. Last March her father died (he also spent most of his life with sarcoidosis but fif not die from it) after 4 years on dialysis (10% of kidney function left). Basically the vessels in his legs were totally blocked, and a gangrene started to grow. They tried surgery to remove the scleotic plaques from his blood vessels, but it did not work. They said it would continue for the rest of the body; so he just asked to stop the dialysis and let him go. The thing is that she spent the whole month in the hospital with him (close to this gangrene with a wound that was never well closed), and around patients that had severe infections. A special one that would not stick to her room had a severe clostridium infection. Following the death of her father, she returned home to Toronto and experienced a severe episode of diarrhea (2 months straight), and started to have pain in her legs (May-June). The doctors told her that she was probably getting rid of all her medication (prednisone) in the diarrhea. Then around August the arrythmias started, and they diagnosed a cardiac sarcoidosis. They did two types of treatments with higher and higher dosage of prednisone. In two months she lost 15 kg. Now they stopped it because nothing was improving.

Now my question. Is it possible that the doctors overlooked the possibility of an infection-related relapse of the sarcoidosis, and therefore should not have administered the prednisone?

Could having been close to an infectious environment (gangrene of her father, clostridium) for so long be a cause?

Then, what is the trend in starting things like methotrexate, TNF or immunosupressant ?

Last week-end she fainted and fell into a profound sleep. SHould she be hospitalized considering the risk of fatal outcome of cardiac sarcoidosis.

What would you recommend in general. And how should we talk to the doctors.

Thanks a lot for your help

James
 
 Re: Heart Sarcoid
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-11-04 10:01

Hi James,

Welcome to SarcInfo.

Steroids and any immunosuppressive is absolutely the wrong treatment. Sarcoidosis is a systemic progressive disease in which CWD, Cell Wall Deficient bacteria is the cause. Suppressing the immune system or crippling a body's natural defense against bacteria only allow it to grow unhampered. Sarcoidosis does not "go away" on it's own as you can see by reading the followingSarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away You may print these and any documents found in the Tutorials for Physicians at the top left.

We with sarcoidosis are born with a genetic pre-disposition to it's development. There are many Patient Tutorials at the top of this page on the right which explain this fully.

One of the prescribed drugs which are an intregal part of the Marshall Protocol is Benicar. Benicar is an angiotensin receptor blocker that also offers renal protection. Your sister-in-law will want to first discontinue any supplements, and start staying out of the sun, and restrict her Vitamin D intake from diet and other sources.

Begin with these steps and if you have any further questions please do not hesitate to ask. That is why we are here.
Caroline
 
 Re: Heart Sarcoid
Author: Diana (---.cache.pol.co.uk)
Date:   10-15-04 09:28

I know that in the case of bad cardiac herx the thing to do is take extra Benicar, and that the epinephrine an ER doctor might give under normal circumstances is unlikely to help. Would epinephrine actually do any harm? One might not be in a position to stop eg an ambulance man from administering epinephrine. It might not be physically possible to explain oneself, or there be noone else to do the explaining about Benicar. What should the strategy be?

Diana
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-16-04 10:20

Diana,

If you need epinephrine in an emergency situation you will likely be in cardiac standstill or anaphylactic shock and not responding to anyone. The use of epinephrine in that unlikely event is entirely appropriate.

What we have noted is that the standard use of epinephrine with a pain killer in a local injection causes a localized adverse reaction of redness, swelling, and pain. Just the opposite of its intended vasoconstricting effect for local or regional anesthesia.

Best,

Meg
 
 Re: Heart Sarcoid
Author: Julia (---.cache.pol.co.uk)
Date:   10-16-04 17:50

Meg,
When I had epinephrine at the dentist (before I knew I shouldn't) I had a definite heart reaction, like palpitations only scarier, even though I wasn't aware of having cardiac sarc. It also made me feel really dizzy and light-headed, but it soon passed.

Julia
 
 Re: Heart Sarcoid
Author: Millie and Rob (202.3.133.---)
Date:   10-20-04 17:12

Hi all,

Can anyone tell me what tests are normally done to confirm heart involvement? My hubby has been having shortness of breath and chest pain (always at the same place), sometime palpitations. All doctors said the pain and shortness of breath are caused by the enlarged lymph nodes inside his lungs, but no one ever mentioned any testing for the heart. His specialist mentioned that his heart was "normal size" on the lung x-ray. He also has palpitations occasionally, which could be a side effect of Prednisolone he was taking for 8 months (weaned off 12 months ago). His blood pressure varies, from 120/80 to 140/100... Running on the treadmill only makes him short of breath and causes coughing...
He taking Mino 2 months ago 50mg every other day (no ARBs) but the doctor we just recently visited said to start on Doxycyline as he suspected that he might have nanobacter infection...

Should we ask the doctor to send us for some heart tests?

ThankYou
Millie and Rob
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-21-04 06:40

Millie and Rob,

According to sarcoidosis 'experts', the only definitive way to test for cardiac involvement is with a heart muscle biopsy. This is, however, dangerous and difficult to locate the exact tissue. Some specialists do a gallium scan which is toxic to the kidneys.

We suggest that your doctor rule out coronary artery disease so that you are assured you will not have a heart attack. Then you can presume that any chest pain is due to sarcoidosis inflammation.

If your doctor suspects nanobacteria he is talking about the same thing we are. Nanobacteria is another name for cell wall deficient bacteria. We know that they are triggering sarcoidosis inflammation.

Doxycycline, however, will do little or nothing to target these nanobacteria. Anecdotally, we have noted that, so Trevor has been studying doxycycline and minocycline which we know to be effective. He has found that there are several significant differences in the chemical structures of doxycycline and minocycline. Benicar is also a key component of the MP. Many patients report little or no Herx reaction with minocyline until they take Benicar.

I hope you will be able to convince this doctor to use the MP as directed. It is the only way to recovery.

Best,

Meg
 
 Re: Heart Sarcoid
Author: RuthCase (---.state.wy.us)
Date:   10-21-04 09:00

I am interested in the finding out Kathy In Wyoming's doctor who is willing to prescribe Benicar. I have noticed a spot of infalmation at the base of one of my fingernails. I now have ridges on this nail. I have read on this site that nail ridges can be indicative of cardiac involvement.

Although, my doctor told me that my Vitamin D level is low, I had a great deal of pain on just the minocin. I notice some skipping around of my heart rate, but I have been told that post menopausal women can experience this. I think that I have had sacroidosis since I was a child.
Ruth
 
 Re: Heart Sarcoid
Author: Freddie Ash (---.ipt.aol.com)
Date:   10-22-04 06:58

HI MEG, MILLIE AND ROB

This is Fred in WV. I just want to add my 2cents on diaganose of heart sarcoidosis. They did want to do a biopsy on me also but I would not let them. But I have learned in the last few years that if they do an echo of the heart it will look sparkling on the screen. I learned this from a cardologist in the mid 1990's. So when I have one done I tell the person doing the test and it does look sparkling. That can be an indication of sarcoidosis of the heart. I hope this helps. Meg it is ok to give my email address to any one that would like to hear about my sarcoidosis of the heart stories.

Your friend in sarcoidosis
Freddie
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-22-04 20:55

Hi Ruth,

Welcome to SarcInfo. I've sent your request to Kathy in Wyoming. Most of us have had symptoms of sarcoidosis for many years before diagnosis.

The condition of fingernails may signify underlying health problems. But I'm not aware that ridges are evidence of cardiac sarcoidosis involvement. Since the fingernail itself is an extension of your skin, you may want to see a dermatologist about this.

I must respectfully disagree with the doctor who told you that your heart skipping was common to menopause and thus normal. That could be an indication of sarcoidosis cardiac involvement.

Most doctors just measure 25-D which is only the precursor to the active metabolite. Alone, it doesn't tell us what we need to know. If yours was low that could mean that your 1,25-D was high because these stores were used up making lots of the active metabolite. You need both D metabolites tested asap.

If you reacted to Mincocin, that is proof positive of occult microbes. I hope you will be able to find a doctor who is willing to treat you with the Marshall Protocol. Let us know if you need a list of supportive doctors and how far you would be willing to travel.

Best,

Meg
 
 Re: Heart Sarcoid
Author: Lottie (---.proxy.aol.com)
Date:   10-23-04 02:19

Ruth,

I have nail ridging, and did some research on it. I learned that it can be a sign of anemia, which is common in Sarcoidosis. Anemia was one of the problems I had when I was first diagnosed in 1999, and has returned now that I am off of Prednisone.

According to Trevor, along with folic acid, the bacteria of Sarcoidosis will thrive on iron. So, it would not help the anemia to take iron for it, but would make the bacteria very happy, and make the Sarcoid worse!

My heart's been skipping beats, and going into tachycardia (rapid pulse) since I was in my twenties... decades before menopause showed up. I, too, believe I've had Sarcoidosis since I was a child.

Lottie
 
 Re: Heart Sarcoid
Author: Dawn (---.proxy.aol.com)
Date:   11-03-04 19:36

Lottie,
I had my echocardiagram. I have read all the heart sarcoid thread as well as anyting I can find on the internet. My doctor found a mitral valve stenosis. From my reading my gut tells me that this may be due to sarcoid? I read an old post ofyours and you seem to say the same? Anyway, I guess my bronchoschopy was useless and you were ( all of you) right. Stick with your regular internist. Thats who found this. After a year of feeling like I was going to die, or like Meg says be bedbound he finally found this. I have to see a cardiologist next week to determine if I need a repair/replacement. Should I still be thinking M.P.? I still have tons of other secondary symptoms, lordie this is just truly a maze. Thanks for your time. Stay well all.
Dawn
 
 Re: Heart Sarcoid
Author: Lottie (---.proxy.aol.com)
Date:   11-03-04 22:27

Hi Dawn,

I think your gut is accurate. I have a prolapsing mitral valve, which means that it goes too far through the opening it’s supposed to close. Like a door that doesn’t seal properly, it allows blood it’s supposed to stop, to flow back through it. Sarcoidosis can cause that as well because of inflammation in the area of the valve.

Inflammation could also easily cause stenosis of the valve

My left ventricle wall is also thickened, I have a small amount of fluid in the pericardial sac (the membrane) around the heart, and my cardiac output is reduced. (amount of blood being pumped out). The ventricle wall is thickened from inflammation, and/or having to work harder because the blood is leaking back through the valve. The fluid is because of inflammation and the heart is irritated.

Yes, you should still be thinking MP! The stenosis may not be the only thing that is going on with your heart because of the Sarcoid. Depending on how extensive the stenosis is, the MP could actually help reduce the stenosis, and allow your heart to return to a more normal state without surgery. It is something that I would be discussing with the doctor.

I would be curious to know what else the Echocardiogram report says.

With all the tons of other symptoms you have, you know that the bugs are probably causing damage in other areas of your body

If the doctor should talk about doing a biopsy of your heart to look for Sarcoid, say.. "No!" Even if they do a biopsy they can easily miss any granulomas that are present, and it’s dangerous.

Have you been able to get the lab work done? It would give us an idea of the inflammation that you’re dealing with.

And, I hate to be a nag, but… please stay out of the sun, and avoid it even through windows. At the very least, COVER UP!!! You also should obtain the NoIR glasses. Your body’s producing even more 1,25 D every time you are exposed to the sun. I’ll just say, this is something that you may just have to trust us about.

Please let us know how you’re doing.

Lottie
 
 Re: Heart Sarcoid
Author: Helen (---.projecthospitality.org)
Date:   12-28-04 06:50

I was diagnosed with sarcoidosis a year ago in december. I was taken to the university of michigan hospital, where dr. jonathan trobe told me that the blindness in my right eye and the chronic cough i had were coming from sarcoidosis. Immediately the doctor put me on an IV of steroids, and I had to stay there in the hospital for three days hooked up to that stupid IV.

I was put on huge doses of steroids (and my size 10 frame ballooned to a 12..overnight!!) but now I have been off the steroids for six months. I am worried now because I know that it could always come back, and at 31 years of age, with a young husband and what I thought was my future ahead of me, I freak out when my already damaged right eye blurs and I get a sharp pain in the left side of my chest.

I have wondered when this happens, if I have cardiac problems due to the sarc. Did anyone else have a pain that can only be described as a constricting tightness(it feels as though I can't inhale deeply without the pain and with slow breathing, I am able to get the constriction to lessen and then subside).

It doesn't happen all the time, but in light of the recent death of Reggie White (the football player) and the news saying that his sleep apnea and sarcoidosis killed him in his sleep, I am beginning to get that feeling that I have no future again. I am so afraid. Just when i was beginning to feel "ok".

Helen
 
 Re: Heart Sarcoid
Author: Pippit (---.asm.bellsouth.net)
Date:   12-28-04 15:54

Hi Helen,

What current meds and dosages are you on? Are you still on Prednisone? Any supplements? All of this information will help us get a better sense of what's going on.

What's the status now with your doctor? Has he read all of the papers and is he any closer to prescribing the MP meds? If he's still hesitating maybe we can help.

Make sure you're protecting yourself from sunlight and other bright light and watching to make sure you aren't eating Vitamin D laden foods.

Obtaining the Benicar as soon as you can will help quite a bit to reduce the cardiac inflammation. I used to get those sharp heart pains and Benicar made a big difference for me once I had been on it for two weeks.

As long as you're here that's a good sign. What happened to Reggie White won't have to happen to you, now that you're taking steps to nip this in the bud. Just be persistent and continue to let us know what's going on. You've come to the right place.

Hang in there,

Pippit
 
 Re: Heart Sarcoid
Author: Tom Rogers (---.se.biz.rr.com)
Date:   12-28-04 20:09

If someone has cardiomyopathy, CHF, arrythmia troubles, or whatever other way Sarc can affect the heart, does the MP REVERSE and completely get rid of the cardiomyopathy, CHF, arrythmia troubles, or whatever other way Sarc can affect the heart?

TIA,

-Tom
 
 Re: Heart Sarcoid
Author: Kathleens (69.146.35.---)
Date:   12-28-04 20:38

Helen and Lee,

I have had sarcoid for 5 1/2 years now, and chest pain and shortness of breath have been my main symptoms. Before I was sick, my pulse was 52, and BP was 110/60 (or lower); after my illness, my HR was 130 resting, and my BP up to 170/115. My chest pain has ALWAYS been in the same location, to the left of my sternum, and approx 2-3 inches to the right of and above my nipple line. While the location of the pain has never varied, the types of pain do. I have had constant, cramping pain, nagging pain, and pinching type pain - none that have been affected by any exertion. My initial echocardiogram was normal, but since then I have developed pulmonary hypertension. My lung tests (PFT's, asthma tests, bronchoscopy) were essentially negative (except for inflammatory pockets in my lungs). I had an exercise tolerance test that showed my alveolar oxygen exchange rate at 50%. I had an angiogram, but the doctor declined to take biopsies (which I requested), as he said it wasn't likely to have cardiac sarcoidosis. I have been treated by 6 cardiologists who basically decided my illness was just me being "fat and out of shape" - no kidding, thanks to the 70 lb prednisone weight gain!!!

I have been on the MP for almost 2 years; I have most of my energy back, my neuro symptoms have much improved; but I am still on 150 mg of metoprolol (beta blocker) to control my chest pain and tachycardia, along with the course of Benicar.

I find after I exert or have flares/herxheimer, my heart feels almost bruised; it can feel mushy, swollen and too big to fit into it's space; I can also feel pronounced weakness radiating from my heart. I can also have pain and weakness down my left arm, rarely my right arm, and my back. This does go away in a few days. Again, the location of my primary chest pain never varies.

I have had incredible improvement on the MP, but I have found that attempting to reduce my beta blockers results in tachycardia and more CP; so I am just going with it, and using whatever dose I need. My cardiac difficulties are basically controlled by meds, so no, my symptoms are not resolved, but they are controlled, which I feel is just as good!!! And I am looking forward to more improvement as I move on to phase 2!

Hope that helps!!!

Take care, Kathleen in Wyoming
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-28-04 21:00

Tom,

Sarcoidosis can cause permanent damage anywhere in the body. The Marshall Protocol should eliminate all sarcoidosis inflammation eventually so there is a good chance that the damage to cardiac tissues is reversible but there may be tissues permanently damaged. We do know with certainty that left untreated (or treated with steroids) that sarcoidosis inflammation will increase, damaging more organs and eventually cause death.

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: Heart Sarcoid
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   12-29-04 21:13

I have a friend who was dx with fibromyalgia. She has valves to her heart that just collapse. She is on meds for that. Could the collapse be part of inflammatory problems. I am trying to convince her to have the 1,25 D and 25 D blood test. Any suggestions? Thanks, Bonita
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-29-04 22:05

Bonita,

It takes a lot of motivation to educate yourself about the MP, find a doctor who will help you with it and then follow it carefully. Fibromyalgia is evidence of Th1 inflammation so your friend might be helped with the MP. You should encourage her to access the website but realize that she must be convinced that it is the right course for her.

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: Heart Sarcoid
Author: Helen (---.projecthospitality.org)
Date:   12-30-04 10:19

Actually Pippit, I have been steroid free for almost 7 months now. The doctors claim that I am in remission, but I will live in new york now and next month on the 20th I am going to go to a specialist that Dr. Trobe suggested I go to in Manhattan. Hopefully my eyes will still be showing no signs of worsening and my lungs will continue to look clean.

I am fearful that I will have bad news on the heart sarcoid, though. I am hoping that the sharp pain that I get in my chest is only coming from my lung. That's the kind of pain I used to get in my chest when I still had granulomas in my left lung.

If I do have heart sarcoid, I can't bring myself to get on steroids ever again. I won't put myself through it and I won't put my husband through it. I am only 31!!! I hate having this. I feel as though I am slapped with my mortality and I don't have the strength to fight for it. I won't gain another 20lbs. and sweat constantly, and cry and scream(sometimes at the same time), dealing with "oid rage". I won't do it.

Helen
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-30-04 19:26

Helen,

It's interesting that your doctors claim you are in remission when you are still complaining of symptoms. Our standards for a claim of remission are much higher. We recognize the systemic nature of sarcoidosis and would not claim remission solely based on improved chest xrays. All systemic symptoms due to sarcoidosis, and there are many, need to be resolved before you are in remission.

You will have a long healthy future if you can find a doctor who will help you with the Marshall Protocol. Keep in mind that the sarcoidosis specialists usually want to continue using prednisone (or other immunosuppressants) despite the many studies that show they actually causes relapses. This is because immunosuppressants prevent the immune system from killing the bacteria, they continue to multiply and your condition gradually deteriorates.

Even if you didn't have so many adverse side effects from steroids, they would not cure cardiac sarcoidosis. In fact, the average lifespan after an official diagnosis of cardiac involvement, with standard treatments, is five years. It isn't necessary to do any fancy tests to determine if you have cardiac involvement. All you need is the D-metabolites tests.

Chest pain can be due to inflammation of the heart, which is a muscle, that needs an adequate blood supply. But chest pain can also be caused by inflammation of the chest wall or the muscles that expand the lungs. You can read about cardiac symptoms caused by the Herxheimer reaction in this MP.com FAQ.

You are right to be concerned about the future. Sarcoidosis doesn't go away unless you kill the bacteria that cause it. Please read the NIH brochure at the top of this page and you will see that in the largest study ever undertaken of sarcoidosis patients, no one had a spontaneous remission.

I hope your new doctor in open-minded enough to study the Marshall Protocol, join the professionals-only forum at MP.com and/or call Dr. Marshall. In this MP.com thread, a member offers suggestions to get your doctor on board with the MP.

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: Heart Sarcoid
Author: smc (---.glst3401.nj.comcast.net)
Date:   12-31-04 11:09

I have not been diagnosed with sarc, but am very suspicious (mom had it too). have had hypervitaminosis d symptoms for about 2 years. Over the past 4 months I developed chest pain, pressure, tightness and weazing that also waxes and wanes. I've been to all the specialists to no avail. Requested primary doc to have my vit d levels monitored 1,25 - 50, 25= 36. I've given him some print outs from this site, but I don't think he has read them. Also have developed high cholesterol for the first time in my life despite a diet/exercise regimine that doesn't put me at risk. I've had many, many tests including chest xray, ct scan, pft, mri's, heart tests etc. Alot has been ruled out and Drs. haven't found any evidence of sarc, but I continue to feel symptomatic. (the newest symptom is unexaplainable swollen ankles.) While the drs. seem to believe that my symptoms are not stress related, they can't seem to figure out what the problem is and suggest that my illness will probably eventually die out (I know that is not true if it is sarc). my question is, are there any other tests that might reveal inflammation in my chest, heart, chest wall, or the muscles that expand the lungs. I've heard of nuculear tests, gallium scans and other scans and I'm not sure if something like that might be more revealing for me. I continue to seek advice from this site in hopes that someone will relate to my situation and be able to point me in the right direction. thank you.
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-31-04 12:58

smc,

You already have all the proof you need in your D-metaboites tests. Your 1,25-D at 50 pg/ml is well over the maximum of 45 pg/ml recommended in the Merck Manual. 98% of the population would be expected to have a lower number. Studies show that at levels above 42 pg/ml bone resorption occurs. This elevation is evidence that you have an abnormal immune system response and dysregulated Vitamin D in response to occult microbes.

I suspect that you have been supplementing with Vitamin D because your 25-D is quite high at 36 ng/ml. This skews the D ratio and makes it nonsignificant. You would benefit by avoiding all sources of Vitamin D. And also, taking steps to avoid an increase in 1,25-D by staying indoors during the day, covering up when you must go out and wearing NoIR sunglasses inside and out.

I hope your PCP will recognize that you don't need a biopsied diagnosis of sarcoidosis to treat with the safe Marshall Protocol. Your symptoms and D-tests are enough for a presumed diagnosis and they are justification for a trial with the MP. This will provide a therapeutic probe which will demonstrate the efficacy of the MP by your response to Benicar and then minocycline. If you need a list of doctors who might be more supportive, we can supply one. You know that you are sick and there is no point waiting for major organ failure before you get the help you need.

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: Heart Sarcoid
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-31-04 13:10

smc,

Meg is correct, you already have all the proof you need. I thought you might want to read these published abstracts about ankle swelling and pain in sarcoidosis.

Case report: bilateral ankle pain in an aerobic dancer.

Bilateral ankle pain secondary to sarcoidosis

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: Heart Sarcoid
Author: Sharon (---.kc.rr.com)
Date:   01-05-05 11:37

Friends


http://www.ajronline.org/cgi/content/full/184/1/249

The author writes about cardiac sarcoid in up to 50% of the sarcoidosis patients.

Cardiac Arthymias are one of the many listed reasons for death in patients with Sarcoidosis.


Best Wishes,

Sharon

DX Sarcoidosis 2000, Biopsy results: Man made material 252 million 2001,

Lungs, Bones, Thalassemia, Skin, Faituge, Nerve.
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-05-05 22:08

Sharon,

Thanks for the article. It doesn't point out that diagnosis of cardiac involvement is not made until there is significant cardiac damage. And that once a patient is officially diagnosed with cardiac sarcoidosis, they are placed on steroids and the average life expectancy is five years because steroids cannot resolve the long-term inflammation. Anti-arrhythmic medications and even a pacemaker will not prevent lethal arrhythmias.

Much cardiac involvement is subclinical or misdiagnosed. A very high level of 1,25-D will hint at cardiac involvement. If the Herxheimer reaction provokes a cardiac response, that is also a way to diagnose cardiac involvement.

We caution everyone to assume that they have cardiac involvement and follow the MP carefully to avoid a dangerous reaction.

Best,

Meg
 
 Re: Heart Sarcoid
Author: Freddie R. Ash (---.ipt.aol.com)
Date:   02-03-05 16:39

HI MEG

This is Fred in WV. I have been in atril fib for about a year now. What I would like to know is there any way the atril fib could me a misdiagnoses and be a spasm of the heart muscle???

Your friend in sarcoidosis
Freddie

freddie
Dx:sarc 2/82but had at least since 8/72. skin, eyes, lungs, intestines, spleen,joints,heart,4bypasses done 2times,on prednisone for few weeks(into mental hospital for 3weeks) tried to stay out of sun since 82, now watching all vit D,6/23benicar
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-03-05 16:57

Hi Freddie,

In atrial fibrillation, the top two chambers of the heart quiver instead of beating regularly. The heart muscle could be said to be in spasm because the electrical conduction system doesn't work as it should. Doctors are unsure of why this happens but it increases with age. IMO, inflammation is a likely cause, especially in someone with sarcoidosis.

Atrial fibriillation is easy to diagnose so I don't think you were misdiagnosed. Has your doctor given you a reason for the atrial fib? It is often not reversible so treatment is focused on preventing complications. Treating your sarcoidosis inflammation with the MP should decrease inflammation in your heart muscle and has the potential to restore a normal rhythm.

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: Heart Sarcoid
Author: katina (---.pioneernet.net)
Date:   03-07-05 09:12

My daughter was Sarc diagnosed Aug 04 after 18mths. They believe it started as Neuro-Sarc (2 Facial Paulsey's, UVeitis & Sore Muscles) but no lesions. After 6 mths on pred. she was symptomless for 5 mths, then sypmtoms started returning without any neuro. This time they found nodules in her Kidneys', Liver, Spleen, Lymph Nodes & allot of inflammation around her Aortic Valve. On her last CT these were all clearing up but there is still some inflammation around the Aortic Valve but they said they weren't concerned because it was better. She has had Chest Pains off/on since day one and shows Nothing in her lungs so they can't explain what's causing this??? I'm concerned about her heart, her tests say it's OK but she does have abnormal Arythymia which they said is common? When she hospitalized for 2 days last week they said there werew times her heart would race. This confirmed her complaints of sharp chest pain, racing heart, & shortness of breath that could wake her from her sleep, she says she often gets burping sensations in her chest? Doctors said she can set her own limits playing sports etc.? Not knowing if her heart has been effected scares the hell out of me. Any advice if these things sound like Heart Sarc and if there should be limits until I get her on MP? In the meanwhile they re-added Prednisone to the Methotrexate she's already on.
Thanks,
Katina
 
 Re: Heart Sarcoid
Author: Julie (---.proxy.aol.com)
Date:   03-07-05 20:55

I was dx'd with sarc last spring and didnt have any problems until the end of the summer - and those were mostly neurosarc issues that gradually went away over a few months. I thought I was fine ... the end of january my heart started racing - beating so fast i thought it was going to jump out of my chest. when i got to the hospital they had me in a bed hooked up to 4 iv's so fast then shocked me to get a normal rhythm - my heart was beating 230 bpm. they put me in intensive care and it happened again that time i felt the shock. They did so many tests - eckocardiagram, angiogram, mri, nuclear stress... my arteries are clear and nothing else is apparantly wrong with the "stucture" . I had surgery and received an
icd - implantable cardioverter defibrillator. it wasnt programed properly and after being home 2 weeks, and back to work a few days my heart speeded up again, even on medication - that was when i found out the pacemaker wasnt set right and the medication wasnt strong enough. they are treating me for cardiac sarc with plaquinel, flecainide, & toprol. Im scared to forget to take my medication, but now ive been out of the hospital ( for the 2nd time) 2 weeks and im feeling pretty good. It is just very scary how things with this disease can sneak up on you. if you think anything is wrong with your heart take it seriously and see a doctor to make sure things are ok.
sorry i just rambled on so much
take care
julie
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   03-07-05 22:34

Hi Julie,

Welcome to SarcInfo. I'm sorry you've been so sick. That cardiac emergency must have been very scary. An implanted pacemaker/defibrilator will make sure that your heart doesn't beat too slow and it will deliver a shock if your heart begins to fibrillate. It cannot, however, make it beat at a normal rate if it gets too fast or irregular. The drugs are meant to do that but they will only work for awhile. You must correct the underlying cause.

Sarcoidosis inflammation that involves the heart causes microscopic changes that can affect the heart's electrical conduction system. That inflammation is caused by pleomorphic bacteria and it will only get worse unless those bacteria are killed. The Marshall Protocol is designed to do that.

Let us know if you have any questions about recovering from sarcoidosis with 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. (MP.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: Heart Sarcoid
Author: katina (---.pioneernet.net)
Date:   03-08-05 07:35

Julie, Thanks for your story, it sounds very similar to many on this thread. It infuriates my that my doctor is not taking my 13 year old daughters symptoms more seriously. I don't want them to come to a conclusion that it's effected her heart when it get's to a point such as an icd or pacemaker. This is prompting me to get with a doctor that will treat her with the MP very quickly so we can avoid any more serious issues. But the doctors were telling me even before her diagnosis that to some degree it didn't matter whether they pinpointed a diagnosis because the treatment would be the same regardless. They keep this philosophy with the area's sarcs is effecting "it doesn't matter, Liver, Kidneys, Brain, Heart, the treatment is the same"...

Thanks,
Katina
 
 Re: Heart Sarcoid
Author: Ed (---.se.biz.rr.com)
Date:   03-08-05 08:08

I just had an appointment with my Cardiologist yesterday to discuss the results of my most recent Echo. The Cardiologist said everything looked fine, but when I questioned her about my shortness of breath and episodes of tachycardia she said that the echo showed some stiffness in the left ventricle which was graded at a level 1. She also said that the combination of ventricle stiffness and tachycardia can be very troublesome.I was given a prescription for the Tachycardia and was told that a little walking would help condition my heart. My next appointment is in six months.
Three years ago a cardiac MRI detected a sarc lesion in my left ventricle.A echo shortly after showed nothing abnormal. A year later an echo showed borderline ventricle stiffness.Now I am at level 1. I have been on the MP for a while, shouldn't I be seeing some improvements? My Vit D levels have dropped,I stay out of the sun as much as possible,I wear my Noir glasses and take the recommended dosage of meds. Currently on Phase II. I must admit that within the last three or four weeks I have experienced quite a noticeable worsening of cardiac symptoms, particulaly the shortness of breath mentioned earlier. I am confronted with the question, are these herx reactions or is the sarc getting worse? I'am a little confused and worried at this time and don't know what direction to take. Any input would be greatly appreciated.
Thanks,
Ed

Sarcoid-cardiac,lung and skin; 02/04 1,25-D 74.7 and 25-D 36.2; started MP 02/04; currently on phase II.

 
 Re: Heart Sarcoid
Author: Margo (---.dsl.intrex.net)
Date:   03-08-05 17:24

Katina,

Have you made a request for a list of doctors in your area? Please put your request in the thread:

POST REQUESTS FOR DOCTORS IN THIS THREAD

Many people with sarcoidosis feel better when they stop consuming foods and supplements that contain vitamin D, and when they stay out of the sun. I hope your daughter has been able to do that.

The methotrexate and prednisone are not associated with long-term remission of sarcoidosis. Furthermore, sarcoidosis is so rarely diagnosed in children that most pediatric specialists have hardly ever seen sarcoidosis. In addition, articles on sarcoidosis often repeat the inaccurate information that the disease will go away on its own.

My daughter, who is also 13, has found the MP to be very helpful.

Please let us know how your search for a doctor goes.

Margo
 
 Re: Heart Sarcoid
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   03-08-05 18:21

Ed,

I understand your concern. Cardiac symptoms can be frightening. You are in phase two and seeing a worsening of your respiratory and cardiac symptoms. That's just what we would expect. That is good news because it means the bacteria are being killed.

These bacteria grow very slowly. That's why, untreated, cardiac symptoms appear gradually. The dramatic increase you've had with the phase two medications is proof positive of occult microbes in your heart. It will take some time, but they will be eradicated. Then your inflammation will resolve and your symptoms will too.

Hang in there,

Meg
 
 Re: Heart Sarcoid
Author: katina (---.pioneernet.net)
Date:   03-09-05 08:19

Margo,
I did get a referral from Meg and have an appointment in less than 2 weeks. Michelle, the girl I spoke with actually has Sarcoidosis and the Doctor (Susan) will be at the convention in Chicago next week. I would have loved to go but unfortunately I'll be in Houston for a business trip but would love it if there was a video. My biggest push to get this going is that it has been 2 years and we have not progressed. She is on more medications and since she was in the Hospital a few weeks ago when they were checking out her heart and gave her ever test imaginable (again) they did mention that one of the things they were looking for was water around her heart which was one of the signs someone else in this thread had for their Cardiac Sard. I'm glad this doctors office could get her in quickly but currently I only have the 1st visit covered by my Medical. Thank God for my Husbands Federal Medical, there are NO Pre-Existing Condition time limits and NO waiting periods and like 10 plans to choose from. The down side is open enrollment isn't until November so I had to write a letter of justification to petition a change.

Thanks,
Katina
 
 Re: Heart Sarcoid
Author: Margo (---.dsl.intrex.net)
Date:   03-09-05 10:32

Katina,

I'm glad you are going to see the doctor soon. The MP has really helped my daughter.

While you are waiting for the appointment, you can order the NoIR sunglasses, as they can take several weeks to arrive.

Margo
 
 Re: Heart Sarcoid
Author: katina (---.pioneernet.net)
Date:   03-10-05 12:28

Margo,
I ordered two pairs of glasses after her diagnosis in August and have been restricting her Vit D. You previously mentioned that your daughter was still taking Metho while on the MP, is that still the case and how is it going. I might have to do the same thing because her doctor's will "Flip Out" if I take her off both the Prednisone and the Methotrexate. Though I hate the thought of the side effects of both of these drugs she is feeling better and I'm very concerned about her symptoms escalating with Herx.

Without both of these her symptoms were bad enough, especially her chest pains. After ALLOT of reading I'm convinced she has "Myocardial Sarcoidosis", she has almost all of the symptoms and I believe her Doctors think the same thing because of the tests they keep running on her heart. Tatiana still attends school and gets all A/B's in the advanced classes and is trying out for Cheerleading, she's going to be devastated if she becomes to ill to do these things. I dread having to confine her to the house, limit her food (which she eats seldom anyway) and then on top of that have her feeling awful again. I know it has to be done and that it will be all worth it in the end when she gets rid of this but at 13 she is not very understanding of my methods.

Thanks,
Katina
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


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

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