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 The material here provides useful background, but much of it is now out-of-date.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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 Family at higher risk of sarc
Author: Admin (207.175.253.---)
Date:   03-31-02 12:40

Yesterday at the 10th Annual Sarcoidosis and Awareness Conference, Dr David Morris (UCSF) pointed out some intial results of the ACCESS study which show the relatives of sarcoid patients are at a higher risk of sarcodosis than non-relatives.

A summary of the study is published at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11739139&dopt=Abstract

Note particularly that in caucasian families the overall relative familial risk was 18 versus only 2.8 in the Afro-American population.

Also note that this is still a very small number. It is saying that instead of a risk of 50 in 100,000 a caucasian family member has a risk of about 1000 in 100,000

I personally suspect the risk would be much greater if it had been based on pre-disposition, or susceptibility to other less serious immune diseases, rather than the requirement for actual biopsied non-caseating granuloma. My personal opinion is that there are a lot of genes that add up to causing the pre-disposition towards a sarcoid reaction, and in different combinations these genes probably also cause some of the other diseases that seem to cluster familiarly, such as arthritis, asthma, diabetes and thyroid dysfunction.But I guess that data is going to have to wait for a future study...

..trevor..
 
 Re: Family at higher risk of sarc
Author: Ken (---.proxy.aol.com)
Date:   04-02-02 09:14

One of the major concerns that researchers have when looking at this is that familial groups often share a common environment. So is it genes or is it environment? There are attempts being made to look at identical twins seperated early in life and later one was diagnosed with sarc. Here is another recent study supporting what Trevor said above.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10950893&dopt=Abstract
 
 Re: Family at higher risk of sarc
Author: Admin (207.175.253.---)
Date:   04-02-02 09:28

Ken raises a good point.

Both genetic and environmental factors have to co-exist in order for the non-caseating granuloma of sarcoidosis to be formed.

The genetics may be in a family, but unless the siblings are all exposed to the triggering factor they will not all get sarcoidosis. In my family I am the only sibling with a tendency to sarc (as far as I can see) and I am the only sibling who got it. My mother seems to me to be at risk of pre-disposition, but she has never been exposed to the triggering agent (apparently).

Also, the environmental factors can be over-bearing, as in the very few (but finite) cases of both husband and wife 'getting' sarcoidosis. These cases are regarded as pointing towards an infectious triggering agent.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Lynn M. (---.philadelphia-18-19rs.pa.dial-access.att.net)
Date:   04-28-02 21:21

My mother was diagnosed with Sarcoidosis when I was 11-years-old. Now I'm going through the same thing with the exception that they didn't know what it was back then. I have been battling this for three years now and my condition continues to worsen. She on the other hand went through it for about 7 months and was back to mom again. I am wondering why it is staying with me. Also, my older sister has Lupus and my younger sister has Chrone's. Is there a connection because of Mom?
I wonder.
 
 Re: Family at higher risk of sarc
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-14-02 10:10

To Lynn:
I wondered the same thing about families and similar illnesses. My Mother had arthritis, it seemed like RA but she was not diagnosed as such. I can remember her being treated with Gold therapy, Cortisone injections, aspirin. My husband of 20 years developed an autoimmune disease and because he wouldn't go to the doctor until he had passed out at work, his problems worsened in a very quick time. His thyroid had gotten to the state of Grave's Disease, his kidneys shut down, and within 6 weeks time he died. The doctors were stunned and had no explanation.....death from autoimmune disease and complications appeared on the autopsy report.
I wonder if people can be exposed and become ill???????
Caroline
 
 Re: Family at higher risk of sarc
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-14-02 10:43

Caroline,
Studies have noted an unusual clustering of husband/wife disease pairs. Clearly this has nothing to do with hereditary factors. Maybe it has something to do with a heightened awareness of immune illness when one partner has been already diagnosed, maybe it has something to do with the shared environment (exposure to the same pollutants, ticks, etc). Nobody really knows.

As for your family connections, I have a theory that sarcoidosis is not caused by any single genetic factor or mutation. There are a number of genetic factors that all together add up to the over-active immune system of sarc. It seems perfectly reasonable that different permutations of those factors in other family members can manifest themselves as related diseases. Now if only we knew which diseases were "related"... certainly RA and Sarcoidosis would be good candidates for such a label

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Pepe (---.cache.pol.co.uk)
Date:   05-21-02 09:39

Hi there,

Has anyone ever heard of a connection between sarcodosis and Motor Neurone disease (ALS). I'm just wondering because my mother developed this and died last year from it. She looked after me through my worse bout of Sarcoids a few years back and we both had skin lesions on our hands feet and heels at one point. She also suffered badly from arthritis for a number of years.

Thanks
Pepe
 
 Re: Family at higher risk of sarc
Author: Cher (144.138.225.---)
Date:   05-22-02 08:20

Hey everyone,
I hadn't thought about adding before to this posting. I don't know if this has any bearing whatsoever to this but both my brother & sister were diagnosed with Rheumatoid Arthritis 11 & 4 monhts previous to me being diagnosed with Sarc. Neither have been tested for Sarc but it is interesting to think that we all had a diagnosis of one kind or another within a 12 month period.
Cheers everyone & stay positive
Cher
 
 Re: Family at higher risk of sarc
Author: Di (---.in-addr.btopenworld.com)
Date:   06-05-02 07:57

Trevor,

My mother had MS very badly, and she was ill before I was born, but no other member of my family has sarc. I have found references to geographical factors on other sites. Supposedly there are clusters and higher incidences of sarc. in some areas. One site referred to a line that could be drawn from Scandinavia, down through western France and Spain with a higher proportion of cases occuring west of this line (including the UK and Ireland). Does this support either the familial or infectious agent theories?

Di
 
 Re: Family at higher risk of sarc
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 08:08

Di,
It's pretty clear that the Scandiavian pre-disposition is a genetic trait. Beyond that there really is very little certainly known about geographic sarc incidences. No, let me put that another way. I just don't believe that the epidemiological studies which have been relied upon for the last few decades are really accurate. The recent ACCESS study in the US, for example. found a changed demography from what traditionalists had expected.

As for supporting the 'infectious agent' or 'familial' 'theories', I am not sure what you mean. Both the bacterial trigger and familial pre-disposition are now proven in Sarcoidosis epidemiology. There is no longer any doubt or 'theory' about either.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Di (---.in-addr.btopenworld.com)
Date:   06-05-02 09:06

Trevor,

Thank you for replying, what I was trying to ask about was the importance of predisposition. Do these factors have any bearing on how the disease effects an individual, for example does it alter the rate of recovery or severity of the illness if you have more than one predisposing factor? I don't fall into any of the given main types, I developed the illness late, I'm not from a known genetically vunerable group nor is there a clear family history. The only thing I have come across is that I do live an identified geographical 'sarc' area. Oh, and my dog had fleas.
As you mention, these epidemiology studies do not seem convincing. Although I have read that African Americans are prone to sarcodosis, there does not seem to be any evidence (no studies?) available of similar tendencies in European Afro Carribeans.

Di
 
 Re: Family at higher risk of sarc
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 09:19

"similar tendencies in European Afro Carribeans" - oh, I don't know, those Vikings rampaged far and wide

Remember it is really not a 'familial' pre-disposition, it is a genetic predisposition that tends to run in families down the female line.

Without the genetic predisposition to a runaway inflammatory process you won't get the granuloma of sarc. There are probably a number of contributory genetic factors, and possesion of one or the other is why we see so much variation from patient to patient. Additionally, this disorder has not been looked upon as benign in the past, and has been treated agressively, so its hard to see (using epidemiology) whether historical prognosis is due to the inflammation itself or if it has been modified by the treatment(s).

The key is to get control of the inflammatory process, even for a short while, so that you can sense the feelings and understand how to interpret the signals coming from your body.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Ken (---.proxy.aol.com)
Date:   06-05-02 19:52

Let us not forget that the primary and initial diagnostic tool leading to "sarcoidosis" is the advent of X-Ray and Ct-Scan technologies. The more advanced portions of the world may very well have a higher incidence of "sarcoidosis" not necessarily from exposures or heredities but more from available diagnostic tools available to the docs we employ. We need to consider that when we say that Afro-Americans have a higher incidence that Afro-South Africans.
 
 Re: Family at higher risk of sarc
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 19:59

Good point Ken,
The high incidence of sarc in Japan is attributed to the compulsory chest Xrays performed there on every member of the population.

I have, in my files, two tiny chest Xray films, just 3 inches square, dated 1964 and 1967, which were part of a mass chest Xray screening for TB while I was a teenager. In retrospect, it is easy to see the progressive bilateral hilar adenopathy on them, but, at the time, before my diagnosis of sarc, they were passed as 'normal' by the mass screening.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Stephanie Bryant (---.proxy.aol.com)
Date:   12-19-02 10:48

I just wanted to know if sarcoidosis is hereditary?
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-19-02 11:14

In a word, "yes"
without a doubt the genetic pre-disposition is heriditary.

The amount of inflammation you collect throughout life is dependent on both your 1,25-D level (don't sunbathe) and your exposure to bacteria/microbes.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   12-19-02 14:35

Dear Trevor:
I was sent a report from the Nursing Association regarding the Smallpox vaccination.
As a student nurse I received booster shots of many diseases, Smallpox was one of them.
I have read that people with autoimmune diseases should NOT get a vaccination of Smallpox....what are your thoughts on this?
Caroline McGuirl
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-19-02 15:01

Caroline McG,
If you look about halfway down the list of topics on the front page you will find a topic called "smallpox vaccination" where I have already answered that question. Alternatively you may click here to take a quick link to that topic.

..trevor..
 
 Re: Family at higher risk of sarc
Author: Kathleen (65.121.96.---)
Date:   12-19-02 17:18

Trevor -

Both my father and sister had sarcoidosis; both pulmonary. My grandmother on my mother's side passed away of pulmonary fibrosis - with a history of respiratory problems, but never diagnosed as sarcoidosis.

I do have scandinavian somewhere in my past - but not on my father's side!

By the way, when I have done past research on sarcoidosis, it seems that Americans have primarily pulmonary sarcoidosis, while the Japanese have primarily cardiac sarcoidosis - do you know why that is??

Kathy in Wyoming
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-19-02 17:38

Kathleen,
When sarcoidosis is evident on a chest X-ray it sort of jumps out and makes a diagnosis relatively easy. In my opinion, Japanese doctors are better at diagnosing this disease when it doesn't appear on an X-ray. This would also account for the higher reported incidence of sarc in Japan.

But the incidence of fatigue as a symptom in Japan is non existent (<10%) while in the Netherlands it is above 70%. I expect this is a cultural issue. It's just a matter of what the doctor feels comfortable talking about with the patient, and what the patient feels comfortable complaining about.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: swc (170.135.241.---)
Date:   03-06-03 13:10

My wife, who has posted on this site a few times, has been diagnosed with both Sarc and RA. I have been doing a lot of reading on the topic. today, I have been reading about mycoplasma infections. this seems to be the key to a number of illnesses(sarc, RA, gulfwar syndrome, fibromialgia,...)

the reason I am posting under this thread is that I have read that mycoplasma infections are contagious. My wife was diagnosed august of 2002. Since that time I have had symptoms that, reading though this site and other mycoplasma sites, has led me to believe that I may have an infection as well. My symptoms have included:

pleuresy, extreme fatigue, slight memory loss and overall mental fogginess.

while my symptoms are all very mild, I just don't feel "right". I have not been tested or diagnosed with anything. My syptoms are different than hers, however, I theorize that it is my body handling the mycoplasma in different ways.

Is there any specific research on this topic?
Has anyone else had similar experience?
Is mycoplasma testing useful to sarc sufferers, and if so, Do you recommed it for family members as well?

any input would be helpful, thanks!------swc's husband
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-06-03 13:53

Swc's husband:
There are lots of sources of CWD bacteria in our environment. CWD is in our milk supply, in some water supplies, and also occur in our own bodies whenever we use penicillin family (eg amoxycillin) antiobiotics to fight off an infection.

A recent study in CHEST found exactly the same number of CWD bugs in the blood of normal folks as they found in Sarc patients. Therefore they wrongly concluded that the bugs weren't the cause of the sarc. You can find link and comments at this page.

Only suceptible folks are made ill, however, (what the doc publishing in CHEST forgot), although I personally believe that there are a heck of a lot more susceptible (but undiagnosed) folks in the community than anybody can comprehend at this point.

You are fortunate in that you know which antibiotics you need to eliminate any CWD that are in your body. Work on it with your wife. Hopefully the antibiotics will give you both a new lease on life.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Donna Williams (---.proxy.aol.com)
Date:   05-21-03 09:45

Please send me some information. My husband has sleep apnea and sarcodosis. Can I be infected with either and are there a direct relation between sleep apnea and sarcodosis?
 
 Re: Family at higher risk of sarc
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-21-03 17:50

Hi Donna,

Welcome to SarcInfo. We don't have any information that we can send you but there is a wealth of information on this site.

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

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

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

You may need a medical dictionary (you can find one online) for some of the papers but I hope you can get the basic idea of Trevor's description of sarcoidosis cause and treatment.

Sleep apnea is an obstuctive airway disorder. I do not believe it is caused or exacerbated by sarcoidosis. Neither condition can infect you.

Let us know if you have any more questions.

Meg
 
 Re: Family at higher risk of sarc
Author: Dianne Brim (---.proxy.aol.com)
Date:   05-31-03 12:15


My mother was diagnosed with sarcoidois in 1954 after the birth of my baby brother. She had part of one lung removed and was given maybe ten years to live; she died in 1979 from sarcoidosis and emphysema. I am now 56 years old and have had numerous respiratory problems, i.e. chronic bronchitis, COPD. I also have bouts of coughing that remind me of my mother. I probably have not looked far enough on the web-site for symptons or warning signs of the disease, but I would appriciate your reply concerning this. My grandmother (my mother's mother) was from Norway, and from what I read, Scandinavians are at a greater risk.

Thank you,
Dianne Brim
 
 Re: Family at higher risk of sarc
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-31-03 14:12

Hi Dianne,

Welcome to SarcInfo. Your family medical history and genetics may put you at higher risk for sarcoidosis. You are wise to be concerned especially considering your respiratory problems.

Please take some time to read the tutorials at the top of the page. Also read the starred threads. There is a topic on the symptoms of Hypervitaminosis-D. You might check it out to see if you have any other symptoms that fit.

Getting your serum ACE and D-metabolites tested is a really simple thing. That is, if you can convince a doctor of its necessity. This will give you some indication of the level of inflammation in your body.

In the meantime you can stop all Vitamin D supplementation and avoid eating foods that contain Vitamin D. You can find a list on this thread Also protect yourself from sunshine/sunlight exposure as outlined in the tutorials and threads. These measures alone can provide you with some measure of relief if your problem is sarcoidosis.

Let us know if you have any other questions. And please keep us updated as to your progress.

Best regards,

Meg
 
 Re: Family at higher risk of sarc
Author: Bradley (---.eburwd3.vic.optusnet.com.au)
Date:   06-01-03 08:01

Thanks Trevor, another interesting thread!

After chatting with my mother about your site today I found out that my cousin (my mothers sisters child) was diagnosed with sarcoidosis a few months ago. My mother and her sister also seem to suffer badly from various allergies and/or intolerances, but not sarc as such.

I only see my cousins side of the family briefly about every 3 or 4 years at Christmas time, and I find it seriously unlikely that I could have a relative with sarcoid unless there is a genetic predisposition at work.

Cheers,
Bradley
 
 Re: Family at higher risk of sarc
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:04

Hello,

I come from a strong Scandinavian background, as my father is only a 1st-generation American. I understand Sarc. is found strongly in that background. My mother's heritage is mostly European. My question is this. My mother suffers from left-ventricular cardiohypertrophy. Her arteries are clear, and she has no signs of plague IN them, but they are finding calcium ON them and also ON top of her heart. Could this thickening actually be Sarc? Her Calcium levels are also very high. Knowing the vitamin d link and calcium, this is causing me to think it's possible. She also contracted Hep-C when she received blood in a hospital stay in 1982. She had perientitis from a large cyst on an ovary and nearly died. She has active Hep-C now. They told her her heart condition was heritary. Any info would be appreciated! Thanx ~Tammy~
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-05-03 21:16

Tammy,
Sarc is just one of many immune diseases that are caused by similar bacteria, but infect different organs and with different severity.

You mother does not need to have sarcoidosis in order to have the bacteria producing enough immune disturbance to cause left-ventricular cardiohypertrophy. In fact, it is also common in Rheumatoid Arthritis.

Calcium is principally regulated by PTH, but PTH is regulated by 1,25-D. I would suggest that a blood test to evaluate her 25-D, 1,25-D, PTH and serum ACE would be a good first step to figuring things out.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Tammy (---.cox-internet.com)
Date:   06-05-03 21:23

Trevor,

Thanks for the info. I'll talk to my Mom about it.

~Tammy~
 
 Re: Family at higher risk of sarc
Author: Tammy (---.cox-internet.com)
Date:   06-06-03 05:06

hello.

Are there geographical areas that are higher Sarc areas than areas? In the U.S. that is.

~Tammy~
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-06-03 05:23

Tammy,
Yes, the South Carolina coastline is quite a high density area. Maybe it is the sunbathing, maybe insect control, who knows. In any case it is of little relevance, in my opinion. You can't run away from immune disease.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-06-03 06:13

Tammy, I live in the Louisville, KY area and in 2001 a local hospital started a "support group" for sarcoid sufferers. At the first meeting, a room was reserved that held maybe 75?? Before the meeting was to start, there were so many people (hundreds and hundreds) that they had to relocate us to the hospital "auditorium." While in this meeting, the physician who was running it (A pulmonologist associated with the hospital) told everyone in the room that the only thing drs./medicine had to offer were steroids. A lady stood up who was obviously 100 lbs. overweight, and told him that she now had "Diabetes" and what could she do about it. This Doc told her that if she would drop 100 lbs., she would not be diabetic any longer. She told him that she had been on steroids for years and could not lose the weight. Another person stood up who was present on behalf of his brother who had gone blind from taking steroids for so long. Yet another man stood up and told us he had been on steroids...are you ready...for 30+ years, since 1969. I thought it's a small wonder you're still alive. Now, the next comment this physician told this group was "If you take steroids long enough, they'll kill you." I thought there would be a mob scene. People were yelling and screaming at this guy because nearly all of them were on steroids. I left. There is a company across the river in Jeffersonville, IN (Colgate, Palmolive) (yes soap place) and there are a number of sarc patients there.

Jan Lewis
 
 Re: Family at higher risk of sarc
Author: Tammy (---.cox-internet.com)
Date:   06-06-03 17:43

Hello Jan,

It does make me wonder about this small town I live in having so many Sarc. patients. My DR. wonders too what the connection may be..... Hope all is well with you. Talk to you later.

~Tammy~
 
 Re: Family at higher risk of sarc
Author: ANN (---.rasserver.net)
Date:   10-20-03 15:46

WHAT ARE SOME OF THE FIRST SIGNS OF SARCOIDSIS. I HAD AN BIOPSY
DONE IN THE AREA WERE THE LESIONS WERE AND WAS TOLD I HAD THIS CONDITION AND SHOULD I BE CONCERNED.

THANKS ANN
 
 Re: Family at higher risk of sarc
Author: Meg (---.115.75.185.euc.wi.charter.com)
Date:   10-20-03 21:40

Hi Ann,

If you've been told that you have sarcoidosis you should be concerned. You may have been told that it usually goes away by itself but there is no proof of that. Many patients suffer subtle symptoms for years while the bacteria the cause sarcoidosis continue to grow. You should not be alarmed though. Because now that we know what causes sarcoidosis, we can put it into remission with a safe, simple treatment plan.

The first signs of sarcoidosis vary with each individual because the granulomatous inflammation can affect any part of your body. But there are symptoms due to hypervitaminosis-D that many of us have in common.

SarcInfo is not simply "a website". It was created to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis.
Many of the patients in the SarcInfo cohort are Health Care workers (Physicians, Nurses and ex-Nurses). Therapy is prescribed and monitored by the patients’ personal physicians.

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

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

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

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

Meg
 
 Re: Family at higher risk of sarc
Author: philip lewis (---.suffolk.lib.ny.us)
Date:   02-27-04 14:03

My brother in law recently died on christmas day because of sarcoidosis and my wife is concerned if this desease might be herditary.
 
 Re: Family at higher risk of sarc
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-27-04 14:10

Philip,

Our genes make us susceptible to sarcoidosis, but this is true of many diseases. Sarcoidosis aggregates in families. The ACCESS study investigators recently concluded that familial aggregation is a risk for both Caucasian and African American races. If your wife is concerned that she or someone else in the family may be suffering from sarcoidosis, suggest they follow up with simple blood tests to evaluate their serum Angiotensin Converting Enzyme and vitamin D metabolites as described in the patient tutorials above.

Belinda
 
 Re: Family at higher risk of sarc
Author: raymond conrad (---.dialsprint.net)
Date:   03-28-04 10:10

Sir: I recently discovered a link to Norman ancestry on both sides of my
family. I contracted sarcoidosis as a young man and it now is cured frommy lungs through the use of prednisone. Since the Normans were of Scadinavian
background, could I have a genetic link toward this disease. Please reply.
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-28-04 10:25

Raymond,
Your ancestry makes very little difference. Maybe from 15% to 25%, which is not such a big factor, really.

Prednisone cures nothing. It merely suppresses the inflammatory response and the symptoms. The disease will flare again, in a year or two, maybe in another organ. Please read the Tutorials here (top left of the page) for a better understanding of the disease.

Your genetic susceptibility was passed from your parents, mainly your mother. No need to look further than that, really.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Steve Backes (---.tnt3.ij.net)
Date:   03-28-04 11:11

Trevor,

Why do you state that the genetic susceptibility was most likely passed from the mother? I scanned the other posts in this thread and see that you've mentioned it before but could not find an explanation.

I've always suspected my fathers side since his father had familial amyloidosis and that my dad's been treated for an irregular heartbeat with unknown cause and has had his share of joint pains and weaknesses. At 76, he's still relatively active but did move to Florida for the warmer weather because of his aches and pains and to get away from climbing the stairs in our two story house.

My mom (now 74) suffered from EN in her late 40's for a few weeks after a viral infection but has shown no sign of slowing down with very few, if any, unexplained aches or pains. Although she has a sister who suffers from many things.

Steve
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-28-04 12:40

Steve,
Most of the autoimmune diseases cluster around the maternal line. I did use the word "mainly" because all genetics is statistical, and both parents contribute to progeny.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: angie (---.proxy.aol.com)
Date:   03-28-04 16:28

Trevor. Just thought you might be interested in this. My mother now 83 years old has suffered all her life with solar dermatites. She gets it very badly and her skin blisters all over her. Her sister had T.B during the last war. My father had Parkinsons disease and has died from it 6 years ago. A connection I wonder to my sarcoidosis? Angie
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-28-04 16:30

Angie,
I recently wrote a paper linking Parkinson's to Sarcoidosis.

..Trevor..
 
 Re: Family at higher risk of sarc
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-02-04 21:58

Meg's note: This message has been more to the appropriate thread.

Author: mohamad hajjar (213.175.181.4)
Date: 04-02-04 21:38

i have a patient who presented with mediastinal lymphadenopathy. her sister is known to have sarcoidosis and is on steroid therapy. both, the patient and her sister also have granulomatous skin lesions involving the vulva. my question is: is there a familial predisposition for sarcoidosis and are the skin lesions in the vulva related to this disease.
thank you.
 
 Re: Family at higher risk of sarc
Author: Lisa (---.computan.on.ca)
Date:   04-02-04 22:34

Speaking of Parkinsons - oh my gosh, I just had a 'light-bulb' moment. Please tell me if you think this has any relevance. Is the CWD bacteria contagious per se? From '95 to 2002 My Father-in-law lived in our home for care with Parkinsons. All of a sudden in Jan. '02 he fell ill with weakness and confusion. He was hospitalized and after a bunch of tests we were told had pneumonia, kidney failure and probably multiple myeloma because his serum calcium level was high. Prior to this he had a 3 month history of a red, raised rash all over his body that I was diligently applying all kinds of creams. Later we were told the rash was probably from the kidney failure - and thats what he died from 10 days later. In Dec. '03 I became unwell with sarcoid symptoms. Just wondering if you think there might be any connection?

Lisa
 
 Re: Family at higher risk of sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-03-04 05:44

Lisa,
Far more likely that you were both exposed to the same pathogen (eg ticks, fleas, or some other nasty bugs) at the same time. His genetic predisposition, and his bacterial load, caused his immune system to react in a particular way, your immune system caused you to react in a different way. Far more likely than any transmission.

The pathogens of Sarcoidosis live inside cells. They do not propagate from person to person, except possibly via intimate contact. Even there, our exposure to the pathogens in the environemnt is much greater than any we might get by transmission. These bugs go through milk pasteurization and water purification. Everybody has 'em, but only the 'autoimmune' patients get sick....

..trevor..
 
 Re: Family at higher risk of sarc
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-03-04 09:20

Mohammad,

Please read through the posts on this thread, "Family at higher risk of sarcoidosis," because there are many links here to published papers reporting a genetic link to sarcoidosis. The familial aggregation of sarcoidosis has been reported in published papers dating back to 1961.

Some years ago, Dr. Newman at National Jewish Hospital said of sarcoidosis, "It tends to run in families. If there’s one person in a family with sarcoidosis, then there is as much as a 16 percent chance another family member will contract the disease."

This can be explained by similar genetic predispositions and similar environmental exposure to pathogens.

There is at least one report of sarcoidosis with lesions on the vulva. Sarcoidosis is a systemic disease that can affect any organ, including genitalia.

I hope this answers your question. Feel free to post again.

Belinda
 
 Re: Family at higher risk of sarc
Author: RuthCase (---.state.wy.us)
Date:   06-18-04 12:45

In looking back I believe that I had scarcoidosis as a child. My grandmother told me that the cemetary in her home town in Missouri was filled with relatives who died due to respiratory disease. My grandmother's sister in AZ died at 90 from TB. I read with interest that scarcoidosis can change into TB over time. Now I have a beautifu little granddaughter who has had trouble with her tear duct since birth. She is five. I've also had trouble with my eyes during periods of active Scaroidosis. As a child my grandmother had to open my eyes in the morning with wet washcloths because they were stuck shut from secreations. I've found in using allergy shots that my symptoms have decreased. Also in using Singular. I believe that the tendency to develop abnormal respond to the pathogens is genetic.

I also would like to have more informaiton on inflamation caused by scarcodosis in the intestines. I am anxious to go on the MP protocol and I am actively looking for a doctor. Thank goodness for you web site. It offers so much more help than the other sites that I have found. Any response to questions on involvement of the eyes or the intestines would be interesting.
 
 Re: Family at higher risk of sarc
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-18-04 17:47

Hi Ruth,

Welcome to SarcInfo. Thanks for sharing your story. There is a lengthy topic thread here about eye problems. And if you do a search, you should find many discussions about intestinal problems.

Let us know if you have trouble finding a doctor and would like a list of potential doctors in your area.

Meg
 
 Re: Family at higher risk of sarc
Author: irma hernandez (---.tampfl.dsl-w.verizon.net)
Date:   05-02-05 17:41

HI MY NAME IS IRMA HERNANDEZ . I WAS DIAGNOST WITH PULMONARI SARCODOSIS IN 1998. I WAS IN TREATMENT FOR 2 YEAR. SEND ME SOME INFORMATION ABOUT THE DISEASE .
 
 Re: Family at higher risk of sarc
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   05-02-05 19:34

Hi Irma,

Welcome to SarcInfo. Everything you need to know to recover from sarcoidosis is right here on www.sarcinfo.com or Marshall Protocol.com You can print out (and highlight ) the Papers for Physicians and take them to your doctor. Dr. Marshall welcomes phone calls from physicians and his number is on all those papers.

Please tell your doctor that SarcInfo is not really a 'website'. It was created to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis.

Many of the patients in the SarcInfo study are health care workers-Doctors, Nurses and ex-Nurses. Therapy is prescribed and monitored by the patients' personal physicians. There are over five hundred patients on the Marshall protocol now and over 95% are responding without further risk to their health.

Sarcinfo has so much new information that many people without a medical background are overwhelmed by it. Don't hesitate to ask any questions you have there. You will usually get an answer from Trevor Marshall or one of the moderators within hours.

Best regards,

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: Family at higher risk of sarc
Author: Mary G. (---.ard.bellsouth.net)
Date:   05-18-05 12:52

Hi - I guess I will jump in here. I started reading the site yesterday and I wonder how I missed it all this time!

My mother has fibromyalgia. Her dad had it. She remembers as a child, that he use to roll in the dirt to try to ease the pain. I have a many siblings and half of them have fibro, as well as some of the grandchildren too.

I am 51 and started with visible symptoms about 4 years ago and then have a big flare at the end of 2004, which led me to discover the world of sarc.

My late husband died from primary systemic amyloidosis (the daddy of all autoimmune diseases???) in '97. My stepson (late husband's son) was diagnosed with RA about 6 years ago.

I tell everyone it is as if we all stepped in the same poison ivy patch and we are all manifesting symptoms in different ways (or in this case, different diseases).

My late hubby and I have 2 kids, ages 19 and 21. I am holding my breath!!!

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Family at higher risk of sarc
Author: Lottie (---.proxy.aol.com)
Date:   05-18-05 21:50

Mary,

Welcome to SarcInfo.

I’m glad that you have found us. I’m sorry that you lost your husband. My doctor told me that Sarcoidosis is the “Grand-daddy” of what are known as “auto-immune diseases. It can attack any and all parts of the body. We now know that it is caused by bacteria that have learned to live and hide within the immune system.

The Marshall Protocol is the only treatment plan which offers a cure from this and other Th1 illnesses.

I hope that you will start by reading the tutorials at the top of each page. Hopefully, you can get your doctor to order the D metabolites tests, and report the actual numbers from the results to us for analysis. This is important even if the results show to be in the normal ranges.

If your children show any symptoms of any of the diseases that you have described, which are all Th1 disesases, they should also have their D-metabolites tested as well. The sooner the bacteria are destroyed, the less opportunity they have to cause damage that the body can’t deal with.

RA is also a Th1 disease, and we have patients on the protocol who have RA. The MP can help your stepson.

You can start to help yourself by avoiding ALL vitamin D in food and supplements. Avoiding the sun and bright lights can also help, and ordering and wearing NoIR sunglasses inside and out.

I will send you additional information by email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Family at higher risk of sarc
Author: Mary G. (---.ard.bellsouth.net)
Date:   05-19-05 07:15

Hi Lottie - Thanks for the welcome. Actually, Amyloidosis is systemic too. And most doctors don't know what it is and never encounter it in practice. It affects your organs, nerves, skin, etc. About 8 in a million people worldwide get it and only a very small handful survive. It is swift, and deadly. But they don't know how many people die that go undiagnosed because doctors aren't familiar with it. In MANY ways, it is very much LIKE Sarcoidosis - I see SO many similarities, except for it's mortality rate. Statistically, Sarc isn't nearly as swift or deadly. But that doesn't matter...if it's your loved one you lose, or if you have it, it's hard. That is why I equate it with stepping in the same poison ivy patch...a totally different disease, but many of the same systemic things going on.

Yes, I am getting serious about the VIT D thing and I just ordered my outside NOiR's yesterday. Somedays I think I'm in good shape; other days I wonder if I'm fooling myself. I am a bit overwhelmed right now with all of the info that it here. Fortunately, my partner can sort through much of this for me...he has a scientific mind.

Again, thank you all from the bottom of my heart.

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Family at higher risk of sarc
Author: Lottie (---.proxy.aol.com)
Date:   05-19-05 11:32

Mary,

I realize that Amyloidosis is systemic too. But from the information that I have found it doesn't affect all of the organs. Because Sarcoid is a bacterial infection, it can invade all of the organs, including the bones.

The death rate of Sarcoid is higher than you might believe. Since doctors often don't relate Sarcoid as being the cause of death. After all, according to them, most patients with Sarcoid will go into remission and have no further problems. In fact, after diagnosis, the prognosis is a matter of one to two decades, with or without Prednisone.

The Marshall Protocol will help you beat those statistics. Sarcoidosis is a deadly disease no matter what the "experts" believe.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Family at higher risk of sarc
Author: Mary G. (---.ard.bellsouth.net)
Date:   05-19-05 17:17

Hi Lottie! Nice to speak with you. Actually, Amyloid absolutely does, and can affect ALL organs, or just one. As there are myths and misinformation out there on Sarcoidosis, so there is on Amyloidosis (and probably every other disease). Symptoms are highly individualized, just like Sarcoid! There is no one rule. I lived with Amyloid and know for a fact that hubby had it in his brain, heart, liver, kidneys, skin, stomach, esophogus, tongue, eyes and nerves (and these are all the highly COMMON places to get it...and an autopsy confirmed it). And yet, there were other patients who had it ONLY in their lymph nodes, and that seemed to be the only place he DIDN'T have it. He died from massive heart, liver and kidney failure mainly, but just about every inch of him was affected. When I look at the protocol here for Sarcoid and I read the list of drugs to AVOID, those are the very drugs they gave to him for Amyloid and now I feel certain they contributed to his death, rather than help him (but I've believed that all along anyhow, which is why I WON'T go the Prednisone route). Doctors have as little of command of Amyloid as they do of Sarcoid or Fibromyalgia or any of these diseases. I do believe Sarcoid is also a deadly disease, much moreso than they let on, no doubt. However, an expected survival time for those with Amyloid is 18 months, give or take and I have witnessed those figures for 9 years, take life, after life, after life within that timeframe. There are a very small handful of Amyloid survivors who have beat the odds beyond the 18 months and are still alive 8 years later. I know of ONE gentleman who is alive from chemo alone after 10 years. Just one. I do not exaggerate. It is highly deadly and extremely aggressive. It's rare in anyone under 30 and the majority of people are 40+, and even moreso, 50+. I have been a part of the amyloid world and forum for 9 years and have read story after story after story and the higher number of patients die, so I'm kind of up on that end of it, regardless what the myths or doctors or the internet has to say. But what I also found out today in researching Sarcoidosis right here on this site, is that sarcoid is produced in the blood stem cells??? I found that highly fascinating as Amyloid is also produced in the blood stem cells (I don't know if I'm describing that accurately, so don't quote me on it...if you are medical, you'll know what I mean). In fact, the only real treatment they have that puts amyloid into remission is a stem-cell transplant. Rather radical. It works for that small handful of people, AND they survive the treatment too. I wonder if anyone has thought to investigate the bacteria angle and at least try something like a MP!!! Well, actually I don't wonder. The answer is no. I certainly can't say if Amyloid is a result of a bacteria, though it sure manifests VERY similiarly to Sarcoid! When I read everyone's stories here on SarcInfo, if I didn't know better, I'd think I was back on the Amyloid forum.

Anyhow, thanks for listening. I appreciate your thoughts.

Mellie-2002-Cough. 2004-IckyEyes, PainJoints/Feet, FatigueMuscles/Body, Swollen Nodes/Glands/Eyes, Thirst/Dry Mouth, Heart Palps, Mental Confusion/Fog, Wobbly. PRE-MP. Synthroid (thyroid removed in '95); Tylenol; Willow Bark or Aspirin. Outside NOiRs.
 
 Re: Family at higher risk of sarc
Author: Denise (---.nsw.bigpond.net.au)
Date:   05-20-05 00:46

I just looked in and read about the 70% reporting of fatigue in the Netherlands vs less than 10% in Japan. ? Cultural.

That is an interesting statistic because I once read another statistic which rated the Netherlands as having the shortest average consultation time with doctors in the world.

The Dutch can hardly blame steep hills for their fatigue. But I guess they have less time with Docs so they make a point about complaining.

Denise
 
 Re: Family at higher risk of sarc
Author: Michelle (---.proxy.aol.com)
Date:   06-19-05 19:31

Hi everyone,
I am sarc patient diagnosed in '95. My 14 year old son has some mysterious spots that showed up first about a year ago. They first appeared on his under arms and spread to his lower arms and have continued to spread to his stomach, chest, back and neck. I have taken him to two dermatologists and even to my doctor. The dermatologists were unable to diagnose even with biopsy. My doctor believed it might be a fungal infection and also recommended I get him a blood test and chest xray. The spots are blueish in color and appear to be in the blood. Do you know of any diseases, including sarc, with these symptoms?
Thanks.
Michelle
 
 Re: Family at higher risk of sarc
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-19-05 21:35

Hi Michelle,

The quickest and easiest way to know if your son has a problem with Th1 inflammation is to test the:

D METABOLITES

He may not have sarcoidosis, but Th1 inflammatory diseases have many names. If his tests show dysregulated Vitamin D metabolism, the Marshall Protocol should be a safe and effective treatement for his mystery skin condition.

This FAQ may also be helpful and contains a link to pictures of cutaneous sarcoidosis:

I’ve developed a rash. What should I do?

Best,

Meg

P.S. We have 3 Michelle's posting. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.
 
 Re: Family at higher risk of sarc
Author: Michelle (---.proxy.aol.com)
Date:   06-20-05 07:40

Hi Meg,
Thank you so much for your reply. It will be very helpful as I continue my quest to determine the nature of my son's skin problem. I have added my signature line.
Thanks again for being such a wonderful source of support.

Michelle

Michelle E. Lewis
 
 Re: Family at higher risk of sarc
Author: Ruth Case (159.238.44.---)
Date:   06-20-05 15:36

Trevor: As a person with sarcoid I am very disappointed that the medical community is unwilling to acknowledge the potential for treatment of this disease. I keep up with the Foundation's web site because this seems to represent the only website that understands this disease and the multiple symptoms that occurs with this disease.

I am only on minocin for this condition. I am begging my doctors to consider putting me on Benicar. I certainly have an abnormal response to Minocin. My reaction after starting to increase my dosage too fast was amazing. I was in so much pain I was taking my husband's Percoset to control the pain. I would not consider the average person taking Minocin to have an occurrance of unexplainable pain like I did simply by taking 50 mg of Minocin every other day. I discontinued the medicine and then went back to 25 mg every other day. I have not had any problems at this dose. I just am relunctant to increase without the Benicar.

Please thank you staff for attemping to make headway. What a joke, that these so call experts are unwilling to learn from individual with Sarcoid who have had a significant decrease in symptoms with antibiotics. Even though, I don't have a medical background, I was thinking of ARB as being helpful with this disease before I found your website. It just makes sense to me that a disease that incresase your ACE levels might respond to ARB therapy. The Marshall protocol deserves some respect . It sounds like you might win the Nobel prize for medicine it the medical community comes to acknowledge that antibiotic therpy and ARB work for this disease. I have had some improvement of my symptoms just with the antibiotic at 25 mg.

More doctors in my opinon should be starting antibiotics in the intial treatment of sarcoid. Small doses are effective from my perspective. I also have increased symptoms with sun exposure, fatigue and pain. The Noir glasses are wonderful. I just have to resign myself to being a mole and I love the sun and being active outdoors.

DX: Sarcoid 1981
 
 Re: Family at higher risk of sarc
Author: Meg (---.117.103.158.euc.wi.charter.com)
Date:   06-22-05 06:50

Ruth,

Congratulations on being able to reach a logical conclusion that the MP works. You are a good example of using critical thinking skills with an open mind, no matter your level of education or area of expertise.

This thread contains SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP.

If your current doctor will not help you with the MP and you need a new doctor, POST REQUESTS FOR DOCTORS IN THIS THREAD.

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: Family at higher risk of sarc
Author: Adella (---.226.234.25.Dial1.Dallas1.Level3.net)
Date:   07-12-05 16:26

I am a 52 years old African American. At the age of 45, in 1998 I was diagnosed with fibromyalgia, arthritis, tendinitis,and since then I've been diagnosed with a connective disorder, autoamune disease , depression, tachacardia, excema, and other skeletal problems. My SED Rate is always elevated and my CRP. I'm in pain most of the time. When I wake up in the mornings I feel fatigue. I've also been diagnosed with hypothyroidism. I am mobic (I used to be on vioxx, then celebrex), I am on synthroid,Soma, Ambien, Prozac, Premarin,hydrocodone, nexium, zyrtec, and zelnorm. My metoblic test is always normal. I stay a little anemic. Could I possibly have Sarcoidsis? What test or tests do my MD need to perform? Thanks for any insight you may be able to give. I'm not able to work since1998 and I have been turn down for disability at the Hearing and Appeals level. I'm at my wits end. Please help.
 
 Re: Family at higher risk of sarc
Author: Lottie (---.proxy.aol.com)
Date:   07-12-05 21:30

Adella,

All of your symptoms do indicate that you could have Sarcoidosis.

It is considered to be an autoimmune disease, but we now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them.

Your SED rate and CRP being elevated indicates that there is inflammation going which further indicates that you very likely have Sarcoidosis. Anemia is also common in people with Sarcoid. Fatigue is very common as well. It makes getting through a day difficult.

The Marshall Protocol is the only treatment presently in use that will assist the body in killing these bacteria that are the cause of Sarcoidosis. Sarcoidosis does not go away on it’s own, or with the standard treatments such as Prednisone which only shuts down the immune system. The immune system is the body’s only weapon against the bacteria. With it shut down the bacteria are allowed to multiply without anything to stop it.

People with Sarcoidosis are unable to properly handle vitamin D. If you go to this link, I’m sure that you will probably recognize many of the symptoms listed here at this site,

Hypervitaminosis-D Symptoms

While you are reading the information here, you can help yourself to start feeling better by avoiding all vitamin D in your diet, sunlight and bright lights. If you must go out in the daytime, please cover up completely. That includes, long pants, long sleeves, scarf, hat, gloves, and NoIR sunglasses.

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

While many doctors rely on a biopsy to diagnosis Sarcoidosis, a simple blood test can show whether or not you have a Th1 illness (Sarcoidosis is only one of the Th1 illnesses) that can be treated with the Marshall Protocol which is described on this site.

D METABOLITES TESTS

Many of us have been successful in getting our Primary Care Physician to work with us and the MP. They tend to be more open to it than the specialists. And the more you know about the MP the easier it will be for both of you to proceed with it.

The Marshall Protocol -- simple explanations

PAPERS FOR PHYSICIANS

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

Please feel free to ask any questions you may have. I will be sending you additional information by email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Family at higher risk of sarc
Author: arlis hutter (---.proxy.aol.com)
Date:   07-19-05 07:23

In l975 I was diagnosed with scarcodosis I was limping and thought I spranied my ankle even went to the doctor for that then in a week My other leg I was limping. Then one morning a few days later I could not get out of bed. I could not even walk. I was 32 and had a 4mo. little girl, and three little boys running around at the time. I was in the hospital and they said I had a spot on the lung and I had scarcodosis. They told me to get off the birth control pill and to stay away from smoke. At that time my husband was smoking I never smoked. And they sid I was allergic to second hand smoke. For 6 months I took Bayer Aspirin 4 times a day 8 of them. I am 62 now and never have had any problems all these years. Just thought this might be helpful to someone.
 
 Re: Family at higher risk of sarc
Author: Lottie (---.proxy.aol.com)
Date:   07-19-05 19:13

Arlis,

Welcome to SarcInfo. Thank you for sharing your experience. I'm wondering if you had a biopsy to confirm that the spot on your lung was indeed Sarcoidosis? Sarcoidosis does not go away on it's own. And, aspirin in that quantity can cause problems as well.

I'm also wondering if you have any other health problems at this time. Such as Arthritis, Diabetes, Heart problems of any kind, High Cholesterol?

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: Family at higher risk of sarc
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-19-05 20:48

Arlis,

Your experience underscores the fact that childbirth can cause flares in sarcoidosis, and the vague symptoms can become troublesome enough to lead to a diagnosis at that point. This is because the placenta produces extra 1,25-dihydroxyvitamin D, along with the disease-activated macrophages that produce unregulated amounts of 1,25-D.

There is further discussion of this on the Sarcoidosis and Pregnancy thread.

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: Family at higher risk of sarc
Author: Arlis (---.proxy.aol.com)
Date:   07-20-05 17:25

Lottie, Yes I had a biopsy I have a scar on my neck to prove that. And yes that is a lot of pills to take. As I said I had no problems and I always get checked with my yearly physical. I have had a knee repaced three years ago. But that was because I stand on hard floors 8 hrs. a day at work. 40 hrs a week for the last 20 years. And I am still working 40 hr.
 
 Re: FIRST TIME ON WEB SITE
Author: Frances Miller (---.srvs.usps.gov)
Date:   07-29-05 10:50

This is my first time viewing this web site.
I was diagnosed with sarc. 8 years ago. Let me clear that up, I had my first episode 8 years ago. I went to 5 different doctors no one could tell me what I had. They could only give me samples of medicine to try to see if it would help. The first symthons I got was like arthritis. I could not walk to good, I could not make a fist. I had inflamation on my knees so severe they had to draw the fluid out with a needle. Every joint in my body had inflamation. I was given 2 weeks of prednisone, i was better as long as the medicine was in my system. When the medicine was gone, the same symthons came back. I went to another doctor, this was to check for arthritis, rummitisim. The test was negative, I was given 2 bags of medicine. At that time I told asked the doctor, "why are you giving me this medicine is the test was negative?" His response was "we are trying it to see what will work". I said to the doctor, I would take the medicine for 5 days if nothing happens, I am not going to take the medicine. I took the medicine for 3 days nothing happened so I did not take anymore. I went to the health food store and asked what do they recommend for inflamation? The store clerk said White Willow Bark, I took the extract with juice for 2 weeks and I got better. I must say I was never diagnosed with SARC. during this period. I went through this for 5 or 6 months.

After living without any other sympthons for 4 years. I started having a pain in my left side, I went to see if I had a STD or if I was pregnant. My doctor said he did see some bacteria and a urinary tract infection, he treated me for that and said if you are not better call back. I only got worse, now I am in severe pain in my left side. I had a CT scan it showed specks on my spline, lungs, and liver. They said to me we must do a biopsy, to see if it cancer. The first thing the doctors said was lupus, that was ruled out, then lipthoma, that was ruled out. Then they said SARC. That is what I have. They could not tell me how I got it, how to cure it, where it came from or nothing about it.

The treatment that was given to me was "1 pill a day for the rest of my life." We started out with 1 Prednisone every day for 4 weeks. I was to revisit the doctor to see how that was working. I gained 50 pounds or more in 45 days. I went back to the doctor he asked about the medicine, I told him "no disrespect to your degrees on your wall, but I cant take a pill just to be taking it. This does not cure SARC, and it can cause me to have a massive heart attack." He simply said to me if you are better and you feel like you dont need it I cant make you take it. If I need it I will come visit him before I start on it again.

When I started going throug these are some things that I realized that may have contributed to my episodes. I started taking vi