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 The material here provides useful background, but much of it is now out-of-date.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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 - My Sarcoidosis - personal stories and perspectives
Author: mo (---.sympatico.ca)
Date:   10-30-02 21:26

I was diagnosed when I was in my early 20's thru a lung biopsy, I am 39 now and have had to go it on my own - doctors in ontario are not up on this dis-ease. I believe that there are hormonal issues, food and allergy and genetic relativities to this dis-ease .
I was always a chubby kid and just around the time of puberty (14yrs) i would notice my hands and feet swelling - i would gain weight with little food intake (remember this when I get to the excess weight loss after child birth)I could not sleep and did not seem to require a great deal of sleep. prior to puberty I was the worst and fussiest eater (remember this one too)then in high school peer pressure and I was trying to eat like others, salads, steaks, regular milk rather than skim - things i never liked. Doctors told me I had chemical imbalance, gave me alfalpha for weight problem(?) let it go at that...I reached the point when I was in my late teens and went on the pill (this I believe caused permanent damage to my hormone functions.) At about 22 yrs I was diagnosed with the sarcoid. told to come yearly for chest x-ray and gallium scan and breathing capacity tests. They said nothing of any other symptoms, nor did they say what I would endure. At 24 I went back to a doctor because my monthly cycle was so heavy I could not function...I was put on ortho 7-7-7Birthcontrol pill - the first month I had almost no cycle went back to dr and he said he could make it disappear if I wanted! I knew something was wrong he fluffed me off...The next month rather than a period I recieved two blood clots in my lungs - please note that I spent every day at the beach that I could but had a terrible burn in the shade - as a kid I was outside all summer and had no problems, I would tan not burn - after puberty I could not burn or tan even now! back to the clots - when I was taken to hospital in excruciating pain I was told it was in my head- when I mentioned the former sarcoid diagnosis the dr asked who told you y ou had this sarcoidosis then proceeded to send me home with tylenol - I was back in emerg the next morning and was kept for a week I should note that at this time I was eating what would be called the healthiest diet going, salads and lots of greens and meats. After the embolisms my health was never the same. I plugged away trying to keep employed pushing myself beyond what I could do until I could do no more and then resign...the longest I worked may have been an 18 month spin. Then I became pregnant - Something was different, it was the best I had ever felt my whole life! I ate anything and everything without gaining any weight - 2 breakfasts (full meals) snacks nonstop and lunchES supper, food was nonstop I would wake hungry in the night...I was on heparin yet I could not handle the MATERNA multivitamins they made me nauseated. I began to learn foods and chemicals that caused nausea I needed to avoid. I gave birth effortlessly and had no pain or labour pains -
but my baby was allergic to everything except the foods i avoided during pregnancy bananas, yogurt pears and sweet potatoes! I had another baby and ate only foods that did not bring on nausea or that I didnot crave...she has only a few allergies. I sense my first child is genetically more like me by the food choices she has and the pains that she gets like me... hands, feet, eyes, chest...but where do the doctors listen here in Ont? It was difficult enough to get help with her allergies ( I was even told I was the problem!) they did not see the child cry nonstop for over 1 year day and night with fists clenched, she was in pain! when I asked if she could have sarcoid i was told no, it is not genetic and she is too young - ya right! in 95 after my second child, my weight fell off in a week, i went to 115 and then slipped to a steady 105...I used to be 145. No matter what how much or how often i ate i could not and can not gain back...lately i have found wormwood and blackwalnut and dongquai helping me - it helps my pain, my monthly cycle and I seem to be gaining weight abit, without eating nonstop ( could there be a parasite connection?) I have made observations on that but will hold off now on it. I do notice I have my sarcoid storms when I eat greens or am exposed to chemicals or too much sun (don't worms hate sun?) isn't vitamin d a hormone ? do hormones not regulate the body, time, energy, reproduction, metabolism, temperature? growth, ( my hair would fall out, my skin would be constantly shedding and my nails grew quicker than i could trim them, my hair, skin and nails would hurt from growing to fast), In 1997 I was in the worst shape ever, I was having seizures ( nodules behind my right ear and base of my skull)they were usually at ovulation and period time. I was in constant head to toe pain skin muscles and bones, could not get enough sleep yet could not get to sleep, my parotoids were so inflamed that I could not swallow, cry, spit or eat, food could not pass through my chest cavity from something being inflamed, hot felt cold and cold felt hot to me. I lost feeling in my toes and fingers - I was washing dishes in straight hot water but it would feel cold to me, i would not realize i was burning my self while cooking. I could not go outside in the winter because it was too cold and the sun made me hurt all over and cause seizures. i would cook meals while hungry but the smell made me feel full. my irises were so inflamed that to look at the slightest light caused pain, when a tear would come from the light pain, it it caused even more pain. I had halos around light constantly. my periods were non flowing clots and sparse but right on time. my ears were always full feeling I could barely hear ( ear candling nearly cleared all my head symptoms - it took nearly 12 each ear to get the crud out but my lumps went down my sinuss cleared and i could bend my neck back and seizures seemed to subside - lemons helped my salava glands and lemon candies- I have my emergency herbs to help me - hawthorn for chest or period time, pepperment for blood flow and oxigenation, taheebo for pain , dong quai for hormone balance elk antler for strength rejuvination. If I have overdone things or been exposed to a trigger I can feel the storm start in my hands, feet, ankles head and eyes. Rest is really number One for me...my housework and all other activities ie anything other than rest stop. I try to counter attack asap and ride the storm through the grace of God. My kids help and understand. close friends understand but most people don't...they look and see a young woman and think I am lazy or unsocial- oh well! I have been seizure free for nearly 4 years.

When I went through my storm in 1997, I was kicked out of hospital 2 times ( I think they may have thought I was a druggie since I was staggering, drooling and palsying, in pain and crying for help) I saw a rhumatologist that wanted to know what my husband did for a living and if he drank, what did i do how old were my kids, how did i get in to see him without a reference oops because i had heard he was good and his secretary booked me in out of sympathy...he sent me for a gallium.

I went to the top notch hospital rhumatologist and he was able to tell me I was "pre fibromyalgia" I was off by 3 trigger points. when I asked if he could get the Lump out of my head, he said it was too close to my brain. he did nothing about the seizures. I went to my respirologist that originally diagnosed me, he said he would get a team together for me, I went to get the scan went back for results and he wanted to know "what do you want from me?" my reply "help" his response "there is nothing wrong with youjust a little spot over your left breast" my response "what about these lumps? " his said"what lumps?" i said "here this oneand these ones" he walked over felt them said"you have nothing there..." I walked out, went to an awesome chiropractor, took my herbs, candled my ears, watched what I ate and was exposed to. Most of all I prayed and still pray because it was not doctors or medicine that have saved me from the most horrible disease.

This is only some of my sarcoid road trip...right now I am raising my kids on my own (I wonder why my ex tried to prove I was a psycho-somatic, hypochondriac in the courts? or why he thought I needed a shrink or that it was in my head - after all none of the doctors found/acknowledged that anything was wrong! What a shame that they would all think that I would put on such a splendid show, even to be able to make my pupils open all the way, make my hair fall out and most charming drool down my drooping mouth!)

By the way how many fellow sarcoidians are musical, artistic, creative?

I hope that my story may help someone, I hope I didn't bore others, and most of all, I hope and pray that more will be known about sarcoid. This is my first time sharing my experience in any way with this much detail. I generally live as though it is the nothing I was led to believe in the beginning, otherwise i will become nuts just trying to get real help -
God Bless you all. Thank you for allowing me to share in this forum. MO.
 
 Re: sarcoidosis: my personal storms & remissions
Author: Denise Testa (---.connect.com.au)
Date:   10-31-02 02:55

Hi Mo,

So many Sarcoidians can sympathise and emphasise with your position.

Who knows just how many of these symptom may be caused by or prescursors to sarcoid.

Like you I had a history of hormonal problems in my late teens. Mine was the opposite. I had severe menstrual cramping and lengthening periods and extreme breast tenderness. After numerous examinations I was put on bromocriptine for the ? microadenoma of the pituitary ( could this have been sarcoid?) and Danocrine for the ovarian cyst both at the same time.
While being treated I developed embolisms in my left arm. I also developed a weight problem at this time, after the danocrine.

I am also an extremely fussy eater who never drank milk and rarely ate meat. I developed heaps of food sensitivities and other allergies. Who knows whether these things are because of the sarcoid, or lead to the sarcoid condition.

I have also had to learn to eat "proper food" but I also wonder whether we are driven to eat a high carb diet by the pain of the disease.

I am not surprised you felt better during pregnancy. Cortisol levels rise to great levels and naturally knock back the inflammation.

I think it is high time doctors started taking long detailed histories of sarcoid patients.

These are the symptoms of sarc according to a 1979 textbook for nurses. Now it isn't all that long ago.

20 - 40 age group
commoner in females
cause uncertain
Tuburcules similar to tubercullosis but no bacillus found in lesions
Disorder of T-Lymphocyte cellular immunity
rashes
diffuse lymph gland swelling.
erythema nodosum
hilar lymphadenopathy on x-ray.
positive Kveim test
high ACE
condition self-limiting clears in a few months
patient to be kept under observation
steroids used in severe lung or eye involvement.
under erythema nodosum it says there may be associated joint aches or swelling.

Just look how much is left out of the picture.

Denise
 
 Re: My Sarcoidosis: personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-31-02 16:15

Denise and Mo,
OK, you win
It is important to collect and discuss each others opinions and recollections. Lets keep the ball rolling, everyone...

..trevor..
ps: For discussions broadly under the topic of "patient emotional support", please use the links at the bottom of this page to Michael's and Bill and Kerrie's message boards , which are better organized to handle such issues.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: carol (---.proxy.aol.com)
Date:   11-01-02 08:22

any research of pine tree theory on sarcoidois or is that an old discarded idea ? our house and neighborhood is surrounded by them? any indication that topomax can start the sarocoidosis? the doctor had heard good results of topomax for weight loss and two weeks after my son started-all hell broke loose.) any research that overweight people are more prone to sarcoidsois? thanks.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-01-02 08:37

Carol,
Take a look at the Johns Hopkins thread.
Like me, and a lot of others, David Moller is pointing out that no allergen or industrial pollutant has the antigenic power to sustain systemic sarcoidosis. Only bacteria can do that. Some of the bacteria are particularly hard to kill off with normal antibiotics. You need Minocycline, and it works best at low dosage (100 mg every other day)

Sarc patients brains are affected by the 1,25-D
Amongst orther things, that makes them more sensitive to smells and other stimuli (headlights, for example). Sarc is not psychosomatic, but the perceived sensitivity to smells (incl. pine) most certainly is.

Sarc patients exhibit wierd side-effects from the psychotic drugs (topamax is an anti-epileptic). Haven't heard of them inducing sarcoidosis, however. Statins, yes, he didn't get a statin prescribed at the same time, by any chance?

Weight is not a cause of sarcoidosis. But it exacerbates hyperglycemia.

..Trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: carol (---.proxy.aol.com)
Date:   11-01-02 09:40

thanks trevor---he has been on 20 mgs of lipitor and welchol. i am anxious to hear the from those who are seeing dr. moller. we are in a small rural town in upstate new york and baltimore is 5 hours away. the pulmonolgist said flatly NO to minocin and to repeat a chest x-ray in a year. end of story.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-01-02 09:51

Lipitor is a statin - that is probably the problem. I don't understand why it is prescribed like candy (actually, I do - the drug companies have tremendous clout). These statins will end up being another HRT fiasco, or worse, IMO (and also in the opinion of Scripps Mercy Hospital).

Statins cause generalized muscle pain, including pain while breathing. They also have been proven to cause Lupus and pneumonia and they may exacerbate other immune diseases (like sarcoidosis).

Take a look at the statin alert thread.

..trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Bill (---.ri.ri.cox.net)
Date:   11-02-02 19:25

To all:
Trevor was correct when he said to use the additional links , both mine and Michael's to discuss your stories. I would love to see more stories and be able to hear from all of you. If you want to be able to share your story and get emotional support, then feel free to join our group!!
thank you,
Bill
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: naomie (---.monarch.net)
Date:   11-03-02 14:00

Hi, I'm writing from Medicine Hat Ab. I was diagnoised with sarcoid in 1989 at the age of 26 at the time I had the whole gamet, the joint pain the eryathema the rashes and extreme itching, the fatigue and shortness of breath. It took 6 mos of dr's and torture to finally get a diagnosis from a lung biopsy. I was treated with prednisone,atarax, reactine and anti-infammatories. I went into a remisson after about a year and have been relatively healthy for the last 12 yrs, I now suspect that the sarc is reactivating as I'm having night sweats ,insomnia, and itching with break outs of nodes behind my ears, my scars and hairline etc I'm to see my Dr tomorrow but after doing some research and finding your site and reading the info and comments I'm unsure as to how to negotiate a plan of attack, any suggestions? I need support! nd
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-03-02 14:18

Naomie,
Get doc to measure your D metabolites. It can be done in Canada, usually for investigation of Osteoporosis. Ask Doc to write the testing up for that purpose.

Also suggest that he prescribe minocycline 100mg q.o.d. for the "acne" on your skin. Yes, I know it's sarc, but the Canadian health authorities, in their infinite wisdom, will only pay for minocycline to be used for acne, not for sarcoidosis

..trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: ivallean smith (---.eastky.net)
Date:   06-16-03 15:01

i have a problum with my salava glands and my doctor has given me 4 different reason for my problums i have swellin in my face and a realy bad tast in my mouth ,any info . would help . please any one , ps it hurts to im off balance and drop thing easley a, i beg any one to help me if you have any idea what wrong it even messed mu heart beat up , ivy . thank you .
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 15:31

Ivallean
Yes, I can understand exactly what you are going through. But you are going to have to find a Doctor or Nurse Practitioner to look after you who is capable of reading and understanding the new research on this site and putting it into practise caring for you. The steps are

1. Get your D metabolites meaured
2. Apply an Angiotensin Blockade with ARBs
3. Start treating the disease with the antibiotic Minocycline

..Trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: ivallean smith (---.eastky.net)
Date:   06-16-03 15:42

salava gland problums do thay effect the brain and balance and the heart ivy
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-16-03 15:50

Ivallean
All of the problems you mentioned, the cardiac arrhythmia, reduction in salivary capability, really bad taste, loss of balance, lack of muscle coordination (dropping things) are all caused by high levels of a hormone called 1,25-dihydroxyvitamin-D that is produced to excess in the sarcoid inflammation. If you read through the topics here (there is a search button at the top left of these messages) you will be able to find where they have been discussed. You have one disease, sarcoidosis, and not a whole stack of smaller sub-diseases. Very few doctors understand that.

..trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: John T. (---.proxy.aol.com)
Date:   06-22-03 13:36

I have been diagnosed since 1993 by lung biopsy since 1993. A few years later it was found in a biopsy done on stomach tissue. My mother was told when I was an infant that I was allergic to milk, so I was given soy formula. Who knows, maybe that was the beginning. That was 1950.
It was in 1973 that I fist had major problems. I was so tired, hurt everywhere, had digestive problems, and was having trouble breathing. When I called my Dr., he accused me of being drunk, because my speech was slurred and very slow. Anyway, he checked me into the hospital and, for 5 days, ran every test he could think of. All he found was a high white count. His diagnosis, nerves. Rx, tranquilizers.
That being no help, I set out to find a way to feel better. It seemed to me that digestion was one of my worst problems, so, by trial and error, I discovered that if I eliminated dairy from my diet, I felt better. ( little did I know)
Gradually I began to feel better. I would have minor setbacks over the years, but generaly I wasn't doing too bad.
In '93 I began having breathing problems again. Xrays showed enlarged lymph nodes in my lungs. Since then it has been a slow downhill ride.
In the last 4 years I have been poked, proded, and, in general, made the medical industry a lot of money. The end result being that, every test shows that what was tested is inflammed. ( joints, muscles, lungs, prostate, intestines, stomach, and every thing else you can think of.
I found this site because I had resorted to doing a web search every weekend, in hopes of finding something that would improve my quality of life. Finally, I believe I have.
The ARBs have been slowly improving my problems. One of the major improvments is that, for the firs time in 2 years, I have normal bowel movments instead of bloody diarrhea.
One thing that I am hoping for improvment in is my ability to think. I struggle to make my mind function the way it used to. I am a college graduate. My best subject was math, yet I find it very hard to help my 9th grade son do his math homework.
I guess the reason I am writing this is because it bugs me when I do things like ask "what is an angiotention converting enzyme test". I had already read the link you sent me to Trevor. I have read the main papers on this site 3 and 4 times each. I have read a good portion of the old threads and I use the search function regularly. Why did I ask one of the most obvious questions possible? The only answer I have is that my brain does not function as it should or used to. I get script for minocin on Tue. The good Lord willing and the creeks don't rise, I'm hoping to have my brain back in a few months.
Until then, I'll do my best to keep the dumb questions to a mimimum. If I slip, bear with me, I really am not trying to waste your time.

Thanks for letting me get that out. I'm eternally grateful to you all for giving me the information that has already improved my life

John T.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Tammy (---.cox-internet.com)
Date:   06-22-03 15:14

John T,

Never quit asking those silly questions. Sometimes it just takes a few to make it really sink in! Believe me, I'm at silly question 1,000,001 and counting! .......Also, you can think of it this way, maybe, just maybe that question has never been asked! hehehe! Have a good one!

~Tammy~
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: John T. (---.proxy.aol.com)
Date:   06-22-03 16:06

Thanks Tammy,
I don't know if you are familiar with JohnPrine's music, but he has a song called Sam Stone about a Viet Nam vet, injured in the war, who deals with cronic pain. One line goes, The grass grew 'round his brain, while the morphine eased the pain.... It comes to mind when fighting to use my brain and it won't work.

John T.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-22-03 16:29

John,

Thank you for your heart-felt story about how how sarcoidosis affects the mind. I am sure many (if not most) of us here can relate to your description of struggling to function on the same cognitive level as you once did.

While I do not consider myself at the end of this journey to health, if my experience is any indication, there is lots of hope for inprovement. A few months after I began taking minocycline, my hubbie and I had to make some adjustments to my new-found health, as I began to regain my mental focus, strength, independence, sense of humor and some orneriness (as we say in Texas!).

If anyone in the world understands, John, it is the people on this board. I applaud your efforts to understand the information here and the energy you have applied to that end. It is sometimes quite technical, so the challenge can be significant.

I agree with Trevor's assessment that what I have reclaimed with the greatest joy - as I have recovered - is my mind!

Belinda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Tammy (---.cox-internet.com)
Date:   06-22-03 18:16

Hello Belinda,

Am I to understand you are from Texas? If so what part? I live in a small town called Paris, which is about 2 hours north of Dallas. If so, I can say "Ya'll" and get away with it! It would be nice to talk to people locally or so who understand this Bad bug Sarc. Well anyway...Ya'll have a great evenin'
~Tammy~
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Yolanda (---.proxy.aol.com)
Date:   07-11-03 17:50

I was Dx in December 02 by a lung biospy . I have been searching for any and all information that I find to try and understand this crazy illness. Sometimes I could just cry from being so frustrated not knowing what to expect to happen next. But this is by far the best site that I have visited.It is not repeating the same info that was on the other twenty sites before.I would just like to go into remission so I could just live a normal life again.No more SOB, being tired all the time, people not understanding what you are talking about when you tell them that you have sarcoid and they say you have what? Yolanda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   07-11-03 19:41

Yolanda,

I was too was diagnosed in Dec 02 and I had the D-levels done mid-month. When they came back elevated, I started on Bencar 40mg q8h at the end of the month. A week later I added 100mg Minocin qod and have titrated that dose up. Now, seven months later, many of my symptoms have resolved, including the intense fatigue that threatened to make me retire early. I'm still on the protocol, working to recover the use of my left foot/leg completely but the nerve damage I thought might be permanent has resolved about 90%. The Herxheimer reactions have been challenging at times but well worth the effort.

I'm glad that you can recognize the value of the information here at SarcInfo. It immediately made sense to me and I have difficulty understanding why it is such a strain for some to accept. Trevor has studied the latest scientific research and used his brilliant insight along with his wife's pharmacology knowledge to devise a treatment protocol based on the recent evidence of a bacterial etiology. His personal history as a sarcoidosis patient, educational background, computer expertise, generosity of money and time, determination and altruism have all combined to create SarcInfo.

We have nothing to sell and nobody gets paid. We just have a burning desire to share with others what we have learned about putting sarcoidosis into remission safely. It's not sarcoidosis business-as-usual here. We are constantly searching for new research studies to learn more about sarcoidosis. We have learned from each other and are open to scientific debate. We hope you will join us and thank you for sharing your story.

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: ivallean (206.157.150.---)
Date:   10-25-03 17:39

hi my name is ivallean and i have a tumor in my salava gland and in the last year i have gained 60 pound is the what causing the weight gain and im hope to find some one who know what i am go throught it hurt and swell and i get till i cant think satraight and i fell bad all the tim my sugar drop low i feel real yuky . so any one if you can help let me know you would be god scent , ivy a,
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Serc (---.sligo.indigo.ie)
Date:   10-26-03 12:43

Hi

I was also diagnosed in Dec 02 - After a needle biopsy to the right lung,
since then, and prior to that being an Asthmatic I had suffered a lot of SOB but funnily enough my Asthma has never been better ( looking around for a piece of wood to touch) I am not taking any medication for Sarcoid yet, I had been on pred in the past and I think this definetly depleted my immune system, so I am trying to fight this the old fashioned way, rest when I need it and plenty of fresh air, when the sun isn't too concentrated. My others symptoms included loss of feeling in my arms and hands and the side of my face which was linked to ocular migraine?
However I just realised that 3 other people I worked with have had these same strange symtoms? I know about the link to bacteria, any link to mold? or radon? anyway I don't a little coincidental perhaps. I also had a lot of flashes in my vision and big black spots - but I had a complete eye exam recently and my eyes are healthy just ageing naturally. I have also had problems with my teeth, I still have a root left after an extraction would not extract. I have considered a lot of the reasons why we may get sarcoid, I have thought about a link to TB, I knew two people who had TB that I spent a lot of time with, I have thought about house mold, I have lived in damp houses all my life and in a damp country. I have thought about the abuse of steriods, the use of other asthma medications, the flu vaccine, I have thought about exposure to coal dust from domestic fuel,
I have thought about a bacteria, 4 years ago I was unlucky enough to catch both ringworm and scabies off my nieces kittens, or her, I'm not sure! I have turned this disorder over and over in my mind for a link to its whereabouts, the medics may consider it not overly important, afterall no one really knows why asthma is here, they just treat it, I do think though that if we were sure of where this came from then we could be much more aware of how to treat it.

I don't know if my sarcoid is in remission, I haven't gotten a chest x-ray since diagnosis or a PFT since April - I only hope it has.

All the best to you all

S
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Pippit (---.asm.bellsouth.net)
Date:   10-26-03 18:09

Serc,

I have had some of the same symptoms you are referring to and I'm now taking Minocycline and Benicar for them. I's been only about 2 weeks but I am beginning to see some results. I had tried Prednisone and it didn't work for me. That's because it really wasn't doing anything about the underlying bacteria. After comparing most of the medications given for Sarcoidosis I decided on this regimine because it was the safest, and made the most sense long-term. I had already decided that I didn't merely want to suppress the symptoms but treat the cause. I had been on antibiotics before but not in as organized a way, and found by accident that I responded to them. When I discovered this site and read all the papers I could find on the subject, I realized why this was effective and worth a try.

I had a Rheumatologist, an ENT surgeon, and a primary care doctor working with me at the time with a tentative Sarc diagnosis when I first became aware of this protocol. My Rheumatologist was quite skeptical when I brought him the paper "The First Year", and I didn't feel he was going to be open-minded enough to try this. He didn't want to give me Benicar but laughed that Minocycline was "useless and weak" so he'd give me that since it couldn't hurt me. His attitude was horrible and he also would not do the D-metabolite tests and re-do the ACE because he thought the cost wasn't worth it unless I was a Lupus patient. Rather than being deterred I knew clearly he wasn't the doctor to be treating me for this and I felt strongly that this protocol should be followed the proper way, and that my disease should be monitored. Since he was not taking this seriously I would ask my primary care physician to take over my care from then on. My primary care doctor is young and works within a teaching University Hospital system that is more research oriented. When I brought the papers to him and e-mailed him more information he was sitting on the fence at first but in time he became much more interested in reading further. He told me he was "cautiously optimistic" but would keep an open mind. Although my condition seemed to stabilize for a little while, it was only a short reprieve.

Then my symptoms started to worsen. I developed lung involvement which really excelerated quickly while I was trying to get a doctor to oversee this treatment. My doctor kept reading and I kept e-mailing him more material. I was seeing him almost every week, worse each time. I had agreed to let him nail down the diagnosis a little further before starting treatment, but one day I came into his office and he could tell I was not doing well. He did a spirometry test, told me the results were pretty bad and then gave me an Albuterol inhaler. This didn't work and it made me wildly aggitated. I went to his office again on an urgent basis, my respiratory symptoms still worse. He scheduled a gallium scan and was going out of town at the end of the week, but this time I didn't even have to ask for the prescription. He took one look at me and told me he could tell I was really suffering and that at this point that outweighed having to confirm the diagnosis, so he would go ahead and give me the Minocycline and Benicar. He told me that his reading on the subject was leading him to think there might really be something to this. I gave him a list of people he could consult with for tech. support on how to use this effectively, which included Trevor and a doctor in Alabama whose name I got from another patient. He was impressed that these people would spend the time to do that. I don't think he has had to call either of them just yet but it made him feel more secure to know that he can if he needs to.

If you are having any symptoms you should really start as soon as possible. Print out the papers and have a conversation with your doctor to see where he stands on the issue.

If he's willing to support you and you decide to go ahead it's best to have the Benicar in place for 2 weeks (40 mgs. every 6-8 hrs.), prior to starting the Minocycline, so that your body is protected from inflammation which will be triggered by the toxins released as the bacteria are killed by the antibiotic.

You may feel sicker at first as if your disease is getting worse, but don't panic, this is just temporary 9 times out of 10. You might feel this 4 hours after you've taken each dose or it may take until the next day (like in my case). Each person has a slightly different reaction based on their original symptoms. If it becomes unbearable at any point don't hesitate to contact your doctor and Trevor to get some advice. You may need to leave more than one day between Minocycline doses or adjust the Benicar from 8 hours to every 6. Let your doctor know you might need him to be more available to you until you're out of the woods.

I can tell you from my own experience that I didn't have a spontaneous remission, and that idea lulled me into a false sense of security while the bacteria waited in the wings for round 2. I've spent most of my life waiting for it to go away and it didn't. Alot of the material on other websites is outdated and would have you believe this doesn't usually need to be treated, but that is really taking a gamble. Bacteria continue to grow until they're treated with antibiotics, and granuloma formation can become a vicious cycle that can get out of control with or without noticeable symptoms.

Please let us know how things go and if you have any trouble getting your doctor to help you.

Pippit
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lynne (---.sum.net)
Date:   11-03-03 07:49

Hello everyone! This is my first post--

Although for more than month I have been reading this site, the links to published papers and everything else I can.

I found you through a link from a parathyroid site, as I continued my years-long attempt at self-diagnosis, or, "what the **** is wrong with me." I have been to so many doctors. Some were nice, some not, but none of them seemed interested enough in all of my strange symptoms to do much reasearch. At least I've gotten enough lab work to convince me that I have sarcoidosis!

Thus, I became an amateur physician, pharmacologist, and now, microbiologist.

It seems ironic that the one thing everyone pushes on menopausal women is calcium supplements, when indeed that is what has made me sicker this year because of the included Vitamin D.

I don't even know where to begin. Especially since this is a "herx" day and I can feel my brain heating up.

I have been taking 50 mg of moncycline for about four weeks. With it I've been taking Enalapril, which I know isn't the right drug but it's all I can get. I figure if nothing else, it has stablized my crazy erratic blood pressure, which I've learned (from the information you have here) is undoubtedly from Vitamin D levels.

My husband is a veterinarian. It is accepted that vets can treat themselves and their families, but my husband is a by-the-rules kind of guy and objects to getting drugs for me that he wouldn't use otherwise. So until I can prove to him that Benicar has veterinary applications, I'm stuck with the Angiotensin Inhibitor.

Last year I went to a rheumatologist. A friend of mine had been diagnosed with fibromyalgia and thought my problems sounded a lot like hers. I was so tired I couldn't cope. I ached all over. I couldn't think straight. I got terrible headaches and neck cramps. My left knee would swell and get stiff and hurt. In fact my whole leg hurt, from my hip to my toes. The rheumatologist ordered a mess of blood work. My calcium was a little high, as was the parathyroid hormone. Thyroid stimulating hormone was over normal range. So I went to the GP of the month, who reluctantly re-ran the TSH, which came back "normal". She also sent me for an MRI ($600) for my knee which showed nothing.

My husband said if I were a dog, with my symptoms, he would treat me for hypothyroidism. I started on a very low dose of Synthroid, and within a month I felt much better. I went to a different GP, confessed to the medication, and he humored me with another TSH test which showed that I wasn't in danger of overmedicating myself.

But I still didn't feel good. My knee continued swell and get better, swell and get better. I went back to the rhuematologist who took an x-ray of my knee and told me I had osteoarthritis and wrote me a referal for "aqua therapy" (in a swimming pool. In December. No way. I'm always colder than anyone else. Even living in Florida). Plus my insurance company wouldn't cover it. So, I now have been diagnosed with an incurable condition with very little treatment available and I still don't feel good.

But boy, I took my calcium. I had to take a liquid calcium citrate/ magnesium combo because calcium carbonate in any form hurts my stomach.

In the mean time, I have a strange red bumpy rash on my shins ("Razor burns", the doctor said. I hadn't shaved for more than a week). Also, my upper arms have what seems to be acne, but doesn't go away. My "seasonal allergies" are anything but seasonal, and I had been using Flonase (and similar meds) for close to 20 years for nasal congestion. I can't take antihistimines. I've had to give up tuna, shrimp, beer because of the intestinal reactions.

Then in June I was having trouble breathing. Asthma? I didn't know. But it hurt. I felt like I was gaging. I thought maybe I was having a heart attack. I had had something like this over the years, but never did figure out what was wrong. I couldn't sleep. It was not good. Allergies? I guess.

The doctor then gave me a sample of Effexor for "irritablity" and a prescription for a thiazide diuretic for my blood pressure. At this point the latest lab for my calcium was 10.9, which is above normal and the highest ever. Thiazides make hypercalciemia worse. I came to the conclusion that this latest doctor didn't care and didn't want to know. The only thing he did for me was to not write anything down, so my insurance company won't know either. This also means he doesn't remember anything about me because nothing is written down!!!

Gosh I'm rambling. I can't seem to put this into an organized narrative. Heavy sigh. I trace all of my symptoms to about 13 years ago, after we moved to Florida from Colorado. I had a bad "flu" that left me with a terrible cough for months, serious fatigue, weight loss, skin problems, mental confusion. Everyone thought I was depressed. I wasn't depressed: I was tired. I improved (we actuallly treated my skin with doxycyline!) but I have never really felt the same.

Mr. Trevor--I am so grateful to you. I'm sorry I don't have a doctor to help chart my progress. If someone knows of a doctor in central Florida, I'd be willing to go there. I do have some lab results which I will send to you if you would like them. Including low lymphocytes.

I started out taking 100mg of minocycline but couldn't live with the reaction. I've cut out milk and Grape-nuts (my favorite breakfast) and I read the labels of everything I buy. I can't entirely cut out sunlight--I work for a friend at a plant nursery two mornings a week. She depends on me. Plus she doesn't approve of medical self-treatment (she still thinks physicians know everything) so I haven't told her about the minocycline. Also, my other job is sitting in front of this computer doing our bookkeeping and I need to get away from it!

One interesting development is that I've lost weight. My weight has been steadily creeping up over the last five or six years, which all the doctors have chalked up to aging, laziness, bad eating habits, etc., none of which I buy. Could the antibiotic have killed bugs in my system that were throwing the glucose/ insulin balance off? It's not just that I'm not turning to food for comfort, I just don't seem to need to eat as much. Food actually seems to be more satisfying. I don't own a scale, but all of my clothes are loose.

I should have written this in chapters! Thanks for listening--Lynne
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: bpeck (---.co.us.ibm.com)
Date:   11-03-03 08:15

Lynne:

You couldn't live with the reaction to Minocycline?
The dose was probably too high.
The fact that Doxy helped your skin indicate bacteria.

So, what are you doing now, nothing?
Don't worry so much about the label. You've got some bug in there.
Start off with low dose Mino, and read all the Mino protocols on this site.
Hey - you're lucky you ae married to Vet - better than a human Dr. in my opinion.
Barb
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lynne (205.160.182.---)
Date:   11-03-03 10:11

Hey Barb--

Now I'm taking 50mg of mino every other day and 10 mg Enalapril q12hrs. On October 10th for my first dose I took the monocycline 100mg, thinking I was tougher and less sick than most people. Ha ha ha. If there was any doubt that I had CWD bacteria at work, the resulting herx removed it. I could hardly open my eyes they were so red and sore, I had killer diarrhea, ached all over especially my bad knee and elbow, and the ringing in my ears!!! The sinus drainage! So, just to be contrary, I took 100mg the next day, too. Woah mama. Bad joujou. For my next dose, I took 50mg, and have been doing so ever since, and only every other day!

Yes, my husband is the best doctor I know. He has to diagnose by observation, asking owners questions and doing blood tests. Symptoms count. I think human doctors treat with one-size-fits-all, and that's whatever new drug the pharmaceutacal reps bring them.

I am lucky to be married to a vet. I am also lucky that I've never been treated with mass quanities of steroids. Except for one week on Medrol for allergies. It was wonderful. I felt like Wonder Woman meets the Incredible Hulk. I called the doctor's office to tell them how much better I felt, and the nurse was glad, but said I could only use a "med-pak" twice a year. Okay, I said. And what do I do the other 50 weeks?

Of course, steroids are a mainstay of veterinary medicine. And I'll admit I've tried the occasional pill. It just seems that you need more and more. With a family history of osteoporosis, I've been pretty leary. So this is what I told my husband: my choices are a) live with this until it kills me and totally ruins my life b) take prednisone until it kills me and totally ruins my life OR c) try the antibiotic protocol which totally adds up and is supported by research and results. No choice, in my mind.

Lynne
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Linda R (---.proxy.aol.com)
Date:   11-06-03 08:04

I find it very helpful to hear others experiences with this illness.

So here is mine to date, and I will try to be brief.

About 6 years ago I noticed an odd skin plaque on my back. My dermatologist biopsied it, looking for lymphoma, and other types of cancer. Results came back non-specific. Plaque keeps growing. Go for another biopsy. I am concerned now that it is skin cancer, but again, the biopsy comes back negative for cancer. The dermatologist mentions that I may have something else going on in my body that would cause this, but doesn't mention sarcoidosis.

The same plaques begin showing up on my forehead, this time also creating white patches. I am give several skin creams to try, none of which work. I resign myself to my mismatched pigment, no big deal.

About 3 years ago, I wake up and realize that I can't see properly out of my right eye. I feel as though I'm looking through gauze. Fearing that I am going blind, I run to the eye doctor, who dialates my eyes and finds that I have Iritis. He tells me to go have a check up, that I could have athritis. I am given steroid drops which clear the inflammation quickly. (I have not had iritis since then, although my eyes do get very dry and irritated.)

I go back to the dermatologist and tell him about the irities. At this point, he does another biopsy. This time it comes back showing granulomas. He sends me for and ACE test (comes back high at 154) and a chest ex-ray (bihilar lypha something, sorry I can't spell). Refers me to a pulmonary doctor. She offers my presnesone, which I refuse, because I feel o.k. other that some fatigue. Sends me for a CAT scan of my lungs and abdomen. Swollen lymph nodes in lungs, abdomen clear.

I recently had a weight loss, though not dramatic, but I am already thin. Pulmonary doc sends me for another CAT scan, this time is concerned because she sees some small lymph nodes in abdomen and is now worried about lymphoma. She is scheduling me for a lung biopsy. I am VERY nervous.

That's my Sarcoid story to date. Boring, but all true!

Wish me luck.

Linda R
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Margo (---.dsl.intrex.net)
Date:   11-07-03 09:39

Linda,

It's great that you have not been on prednisone. It is tough to get off of, and doesn't make the sarcoidosis go away. Other people have written here of similar problems, with doctors feeling a need to rule out lymphoma. You can access the search question, to read some discussions of how to ask to have the tissue from the biopsy handled to make sure that the distinction between sarcoid granulomas and lymphoma is clear.

Please read the papers at the top of this page. There is a treatment that will help your skin plaques and the systemic granulomas. Antibiotics (first minocycline, then minocycline + azythromycin) will attack the bacterial infections at the root of the sarcoidosis. Benicar, an angiotensin receptor blocker, helps a great deal to reduce the systemic symptoms of sarcoidosis. It also helps people to manage the Herxheimer produced by the antibiotics.

There is a paper about the benefits of antibiotics in treating skin manifestations of sarcoidosis (Bachelez H, Senet P, Cadranel J, Kaoukhov A, Dubertret L: The use of tetracyclines for the treatment of sarcoidosis. Arch Dermatol. 2001 Jan;137(1):69-73[Pubmed Abstract PMID: 11176663 ]
). Perhaps your dermatologist will start you on antibiotics because of this paper. Minocycline is the same antibiotic that teenagers routinely take to treat acne, so it is viewed as very safe.

Margo
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Margo (---.dsl.intrex.net)
Date:   11-07-03 09:42

Linda,

Actually, the paper about how to handle biopsied tissue is at the top of the page, the article "How a Pathologist can see Bacteria causing Sarcoidosis."

Maybe others who have had lung biopsies can offer some advice.

Margo
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Linda R (---.proxy.aol.com)
Date:   11-07-03 15:02

Margo,

Thanks for the information. As a matter of fact, my dermatologist did give me minocycline. Unfortunately, I have not been consistant with it - I am back on track now, 50 mil. every other day. My understanding is it takes a long time to kill these bugs?

I am very unsure about undergoing this lung/lymph node biopsy because it seems so invasive. Of course I want a definite diagnosis, but isn't there anything else they can do without putting me out and cutting into me? And I did get the skin plaques biopsied already, it was positive for sarc and negative for cancer, but maybe that's not enough?

I would really appreciate any opinions or advice on this. I have been feeling pretty good lately, and I really don't want to get knocked for a loop with an invasive procedure if it isn't absolutely necessary.

And by the way, I am happy to report that the plaques on my back have flattened significantly lately, which I attribute to the minocycline - the only thing is that they seem more pigmented (darker) than before. But they are definately flatter.

Thanks again. Have great weekend, everybody.

Linda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Pippit (---.asm.bellsouth.net)
Date:   11-07-03 18:40

Linda R.,

It is a constant quandary with this disease as to just how much surgery to have to confirm a diagnosis. It puts both doctors and patients in an awkward position. I know that the classical guidelines state that non-caseating granulomas must be found in 2 or more areas of the body to unequivically, undisputably prove you have Sarcoidosis. I think these guielines are stricter than almost any disease I know of. Often the best interest of the patient gets lost in trying to "nail it". I don't have a definite answer and can see both sides of this issue. What you decide for the most part will depend on your own set of circumstances. If you forsee down the road that your medical insurance is going to give you a problem covering the services/meds. you might need for Sarcoidosis then you might want to have it done; but if you don't think this will ever come up and you and your doctor feel comfortable in making a clinical diagnosis and using the findings of skin granulomas that you already confirmed then that might be sufficient.

It could well be that if you're feeling better now the Minocycline may have worked enough already that any granulomas in the area you are to have biopsied may not even show up.

Just be sure to take the Minocycline and Benicar as directed in this protocol and things should continue to improve.

Pippit
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lynne (205.160.182.---)
Date:   11-08-03 08:31

Hi Linda--

This is a hard call! I'm suffering with what I guess is lymph node enlargement in my chest and neck after one month of minocycline treatment. I haven't had my sarcoidosis diagnosed by a doctor because my doctor blew me off and I've run out of patience with doctors in general. But right now I'm quite miserable with this gagging /short of breath sensation that I've had before, and has now been brought on with the antibiotic causing a Herx in my lymph nodes. Of course, I don't know this for sure. Only by what I've read here at Sarco.info.com.

Would I feel better knowing for sure that I don't have MS or cancer or heart disease or any of the other things that doctors could mistake this for? Yes. I would. For me, though, adding everything up, it's the only thing it COULD be.

I mean, I've gone to three doctors in the last year who didn't have an answer. The last one I showed two different types of skin lesions to--one was erythema nodosom on my shins, which is a sarco no-brainer; the other was this real ugly zitty-like stuff on my upper arms--and he didn't even care enough to get out a book to look it up.

I'm not sure even my husband, who's a veterinarian with a background in microbiology, totally believes that this is what I have, and that I should be treating it this way.

But you've got your doctors' attention. How invasive is a lymph node biopsy? How much does it cost and for how long are you comfortable stalling it off? How long have you been taking the minocycline?

If this procedure would get you diagnosed and you could convince the pulmonolgist to follow the ABX/ARB protocol, wow that would be great!!! But if you just get offered prednisone, then, I don't know. You've got minocycline and your dermatologist to monitor it.

If you're looking for peace of mind, then you should go through with it. I'm not much of a gambler, but probably I would do it, and then kick myself forever for not trusting my own instincts.

Was that any help at all? (Ha) Oh, and I think minocycline does cause temporary pigmentation changes. I've noticed that some scars have gotten darker.

You should definitely talk to someone who has had this done.

Lynne.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Margo (---.dsl.intrex.net)
Date:   11-08-03 08:37

Linda,

I recall Trevor saying that the reason doctors insist on confirming the diagnosis by biopsy has to do with the dangerous side effects of the (then) available treatments for sarcoidosis. They couldn't justify the risks of the treatments if there was uncertainty about the diagnosis.

In terms of the concern about lymphoma, I wonder if your doctor is feels that there is real danger with watchful waiting? That is, if it is safe to see if the x-rays improve with the antibiotic/Benicar protocol.

You are right that it generally takes a long time to kill the bacteria that cause sarcoidosis. Over time, as the Herx. diminishes with the 50 mg dose, you should gradually work up to 100 mg.

I have read that other people also have experienced pigmented areas in the skin. (This was also found in the French paper on treating sarcoidosis with tetracyclines, where it was noted that the pigmented areas eventually resolved.)

Making these decisions about surgery is difficult, I know. I hope your doctors will be able to thoroughly answer your questions, to help you make an informed decision.

Margo
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Linda R (---.proxy.aol.com)
Date:   11-08-03 08:38

Pippit,

Thank you for your response. I will see the surgeon on Tuesday to discuss the procedure. Then I will have to seriously weigh the pros and cons.

In the meantime, I am feeling the best I have in a long time. Lots of energy (this is a big surprise to me. I have never been a high energy person, even as a kid).

I am dancing up a storm (Tango, Belly Dancing, Flamingo) and have been since August of this year. That might or might not have something to due with the weight loss.

I am the most sweat soaked person on the dance floor. I understand that many if not all folks with sarc have this problem. I used to think it was just me!!! Of couse, now I wonder if lymphoma could also cause this.

I am so grateful for this board and all who contribute to it.

Linda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Kennith Williams (---.jan.bellsouth.net)
Date:   02-18-04 12:56

What causes swollen salava glands? I just realized that mine are swollen. What should I do?
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-18-04 18:54

Hi Kennith,

Welcome to SarcInfo. Swollen salivary glands could be due to sarcoidosis involvement of the salivary glands. The granulomatous inflammation can obstruct the salivary ducts also.

You need to ask your doctor to check your D-metabolite levels. This blood test is a good indication of systemic sarcoidosis inflammation. Your sarcoidosis needs to be treated effectively with avoidance of all forms of Vitamin D. Then Benicar, minocycline and various antibiotic combinations will eventually resolve your sarc symptoms.

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: tracy (---.proxy.aol.com)
Date:   02-26-04 05:50

I was diagnosed with Sarcoidosis of the parotid glands in 1992. After what seemed like seeing "500" doctors who thought I was a "very interestng"
case I was started on massive amounts of steroids and therafter leukeran, a chemo drug that no doctor in New Jersey would administer to me. Hence, I had to drag myself to Philidelphia to a Regional Center for its administration. Long about 1997 after severe hepatospleenomegaly, excruciating pain and vomiting, a second biopsy was performed on my liver which revealed multiple non-caseating granulomas. IN 2002 I was diagnosed with a Cardiothorasic Ascending Aneyurysm (it was not biopsied for granulomas) The doctors have said that I am the youngest patient that they have seeen with this malady. Still the treatment of choice was steroids. During the course of steroids and placquenil I have gained 100 pounds.

On and off during my illness I have been affforded the luxury of being given percocet which slightly takes the edge off the pain. I most recently have developed ulnar neuropathy for which the pain is relentless. Last week my blood revealed a positive ANA. My physician would like to start me on Cytoxin and I am frightened. Bone scans already reveal degenerative changes.

I have read Karen Duffy's book in which she admits to taking morphine daily. This treatment seems to be working for her as she just brought a new baby into the world with her husband's sperm and surrogate mother. My point is that if daily morphine allows her to function to the level of taking care of another human being, I would like to finding out if I can work for myself and others. l also would like to know if anyone else has had experience with daily morphine that has produced releif for them that enables them to function somewhat pain free, therefore allowing them to decrease the toxic drugs of choice for treating this disease?

Thank you.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Arlene Kollendar (---.56.18.133.Dial1.Richmond1.Level3.net)
Date:   02-26-04 07:02

Pippit,
I was reading your post from 10 -26-03. I noticed the following in that post:
" I gave him a list of people he could consult with for tech. support on how to use this effectively, which included Trevor and a doctor in Alabama whose name I got from another patient. He was impressed that these people would spend the time to do that. I don't think he has had to call either of them just yet but it made him feel more secure to know that he can if he needs to."


My Doctor has asked for Drs. she can speak to who have prescribd the Benicar. Can you give me the name and number of your doc nd te Doc in Alabama? Meg has my email address. I don't now how to cotact you other than through this board. I think if she can talk to a Dr. who has prescribed the Benicar then she just might do it for me.

Anyone else with a name and number of a Doctor she can call woud be very greatly appreciated.

With Gratitude,
Arlene
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-04 09:41

Tracy,
Welcome to SarcInfo.
Here you will find discussion on the cure for this disease, and a whole lot of folks who are on the way to, or have achieved, that goal.

I understand how frustrating it can be to have increasingly more dangerous drugs thrust at you by increasingly more frustrated physicians, but I have one piece of advice "Just Say No".

You will find all the info you need to help your Doctors understand how to cure this disease in the "Papers for Physicians" at the top right of the page. Please read through the "Patient Tutorials" at the top left. It may take you a few days to work through all the info, but it will be the best-spent few days of your life.

..Trevor..
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Mr Bhagwanji Patel (---.server.ntli.net)
Date:   02-26-04 15:19

Hello to all SARC family, this is my first contact to this SarcInfo forums. My Name is Mr Bhagwanji Patel, but people call me Bhagwan, I was born in India, came to UK when I was 12 years old.

From this site I have learned a lot, and from the list of the symptoms, for people who suffer from sarcoidosis. I have experienced 75% of these symptoms, since early as at age of 20, I am now 49, at the age of 37 I have found out that I suffer from dyslexia, until now I put down memory loss and lack of concentration, migraine headache to dyslexia. Joint pain and other symptoms to being an immigrant from warmer climate to colder one.

Reading the symptoms of sarcoidosis I am now more convince that I also have this.

From Nov 2002 to July 2003 I was in living hell. All the symptoms of sarcoidosis was in full force, my GP giving me antibiotic course and cough medicine which did not work gave me another course of antibiotic, still nothing so send me for blood test could not find anything wrong in it, then he gave me steroid medicine for my very bad cough, this helped but soon as the course of tablet ran out it came back with a vengeance,
All this time, 8-months constant high temp and loosing weight. I went to see my regular GP, but he was on holiday so one of the partners saw me and came to conclusion that my symptoms sounded like I have TB, so he sent me for chest X-Ray.
He got the result and rang me at home and told me there was abnormality on my chest X-Ray and that I would have go to hospital for test for TB. He arranged all the necessary appointment as an emergency case, and waited two weeks for the result, there was no reaction on the jab that they gave me on my arm, nothing positive on blood test. They then did a sputum test, which even took more time to get the results.

On one of the visit to respiratory clinic, I told Dr that ‘look I am living in hell with all these symptoms it is not just not me, my wife too, she suffers too in looking after me 24/7, I have to change my pyjamas and bed sheets 4 time a night, as it used to get so wet from sweating, joint pain, itching and burning sensation on the skin, irritable, don’t feel like eating anything, bitter taste in mouth-, don’t feel like watching TV or listening to music -which I used to like, don’t like socialising, fatigue –feel so tired that if have itch somewhere on my body I just did not have the energy to move my hand to sooth that itch, and for no reason I got emotional. And on top of that migraine headache and still losing weight. All this for 8-months and not a single medication beside paracetomol to keep my temp down.’

After listening to my cry, she picked up a phone to ask if a bed was available, there was none, told me to go home and when bed was available they will ring me at home for admission, to keep an eye on me and to monitor my temp. Day before admission, guess what! My temp. and night sweating went down. Without any medication or anything, on its own accord it began to subside. But they still admitted me in isolation room reserved for TB patients. Did blood test, sputum test and breathing test, breathing test was not normal but they still have no clue to my illness, they kept me for 5 days and sent me home without any medication. They made me sign couple of release forms in front of 3 other consultants. The final word was ‘we will look at all your tests and X-Rays again with experts in radiology and will get back to you 2/52’ - which mean in two weeks time, 4 weeks went by and heard nothing from my hospital. I went back to my GP and told him about this and he told me that they still don’t know anything that is why they have not contacted me.

In meantime my irritating cough subsided, started to gain weight, felt like eating, got taste back in my mouth, but fatigue, short term memory loss, joint pain, headaches, skin rash, and other symptoms where still there. (The short term memory loss was a blessing in disguise, because it helped me to forget some of the pain which I had from so many years. Oh! I forgot to tell you, I also suffer from severe lower back pain.) I did not bother to find out as I was to afraid to know what was wrong with me.

Just when I had accepted that their was nothing wrong with me a letter came from hospital that I was in,and this after 6 months. The appointment was for Friday 13th Feb. 2004.
I went for this appointment and saw a lady consultant, who made an apology by saying that my file somehow got misplaced. she apologies on behalf of the hospital for not getting in touch sooner. Dr. sent me for new blood test and Chest X-Ray, as it had been 6 months since any test done, next day there was another appointment letter in my post and this one was for Bronchoscopy to be done on 18th Feb 2004 ( In UK you don’t get this kind of appointment so quickly unless it was an emergency. Dr saw my X-Ray the same day it was taken and saw something on my chest X-Ray that made Dr to arrange Bronchoscopy, on 16th Feb Dr rang to confirm that I have received the Bronchoscopy appointment and also to let me know that Dr has also arranged for biopsy to be done at the same time, -very very bad experience one has to go through-.(very painful and distressing).

On the day of Bronchoscopy and biopsy, my consultant Dr came to see me at hospital to fill me in of what was going to be done. I asked the Dr what is the urgency? Dr said that the X-Rays which where taken 6 month ago and one that was taken recently, Dr found increased in shadow. I asked the Dr who was doing Bronchoscopy and biopsy of his opinion, on what I have, and he thought it as sarcoidosis.

Today 26th Feb 2004 this is the stage where I am. I am still waiting for the biopsy result. When I do get a result –and I know from the list of symptoms that you have mentioned here in your SarcInfo that I have Sarcoidosis- I want to be ready with all the information about Sarcoidosis (for which I am very glad I found your SarcInfo web site which is very informative and as a bonus, you have given an alternative medication beside the dreaded steroid medicine which have a lots of side effects) I know now what Questions to ask Dr when I do get the results, but I still need your help of what to expect from here on. I have read a lot and as I have my concentration and memory problem, I take in very little. I’ll be very grateful if you can send info about Marshall protocol and all other relevant information a NEW sarcoidosis sufferer might need.

I thank you all for your effort and time you take out for others to benefit.

We have a saying ‘you came to this world naked and when you go you go naked, you cannot take any physical wealth with you, BUT all the good thing that you have done and all the BLESSING that you have received will go with you.’ Thank you.
My E-mail - bhagwan

Love Bhagwan
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-26-04 21:22

Hi Tracy,

Welcome to SarcInfo. IMO, taking daily morphine and not being able to carry a child to term is hardly a success story, no matter how gorgeous you might look. Karen Duffy has information about the Marshall Protocol. I don't know why anyone would want to continue to take narcotics as a palliative measure instead of putting their sarcoidosis into remission permanently.

The Marshall Protocol isn't an easy fix but it will eventually alleviate your pain, not just cover it up. Please read the success stories thread for more information about former sarcoidosis patients who are doing more than just getting by. And let us know if you have any specific questions about how to get your life back with this safe, new treatment.

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-26-04 21:37

Hello Bhagwan,

Welcome to SarcInfo. Thanks for sharing your story. I'm sorry that you have been suffering for so long. Unfortunately, yours is an all-too-common tale of delayed diagnosis. But I'm happy that you have found us before you were offered the standard toxic treatment.

I'll email you the new guideline. It should provide you and your doctor with all the info you need to get started on the road to recovery. Let us know if you have any questions.

Good luck,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lane (---.ath.bellsouth.net)
Date:   06-19-04 16:25

I have never given much of a personal story since finding this site. I have just been so busy reading everything I can. I am so grateful for this information. I was diagnosed in 1980 when I was 30 thru a pre-operative chest xray for the removal of a ganglion cyst on my left hand. My xray showed showed all these white blotches. I then had a biopsy via bronchoscopy which confirmed sarcoidosis. I was asymtomatic and the drs. did not know very much about it anyway so I went on with my life until 2 years ago. I started with shortness of breath, a sore on my body, terrible aches and pains, and every thing else on this site. A new ct scan and prednisone and here I am looking for another answer besides something that will only mask it. And I have found it. I am now on the benicar and will start the mino next week and can not wait!!!! p.s. when I read on the forum "why I got sarcoid" about being sick as a child after playing outside I knew I had found the correct information. And again thank you so much. Lane
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   06-19-04 17:07

Lane,

Thanks for sharing your story. It confirms what many others have told us about the chronic, progressive nature of this disease. Although many doctors don't recognize the symptoms of disease progression, without proper treatment, the bacteria continue to grow. I'm glad that you realized that prednisone just masks the symptoms before it gave you other unwanted diseases.

I recognized myself in the Marshalls' paper about sarcoidosis too. All I had to do to verify the information was eliminate my Vitamin D supplements and stay out of the sun for a few days. Then it was obvious to me, too, that I'd found the right treatment because I already felt better.

Please let us know how you get along.

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Michelle (---.plaind.com)
Date:   06-25-04 10:22

I was suffering from night sweats and thought I was going through the change of life even though I'm in my late 30's. A plum size tumor was found in one of my breasts the diagnosis is Sarcoidosis. Has anyone experienced this, and are there any suggestions to reduce the pain.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-25-04 13:26

Michelle,

You are lucky you got a diagnosis, because now you can begin understanding and treating the disease. Many women are just told that they don't have cancer -- but the lab doesn't identify the sarcoid inflammation that has caused their breast lump. So they aren't diagnosed with sarcoidosis until years later.

One of the first things you can do to help with the pain (over time) is restricting your exposure to all sources of vitamin D, including sunlight. Read all the patient tutorials in the box at the top left, and keep reading this forum.

This forum is full of the information you need to overcome this disease. If you have any questions, just ask.

Belinda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Jordan (---.cloudnet.com)
Date:   08-08-04 20:25

Hi I was wondering If you could help me. I feel like I might have a problum.
See when I extend my arms I hear a liquid noise up by my sholder so what do you say about that?
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-08-04 20:36

Jordan,

Welcome to SarcInfo. We'd be happy to help you but we need a bit more information. This forum addresses the needs of patients with sarcoidosis. What has your doctor said?

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: abby (206.157.151.---)
Date:   09-03-04 18:54

salava gland tumor and cyst will some one please tell me why we get these and , even if thay arent cancer why do thay hurt so bad and cause so mutch problum to our health and do this cause seizures and , now my dr said i am lousing sight in my left eyes due to pressure in the eye on the same side of the tumor , and he said it pressure , please tell me all you can about this i am also have mermory problums , any help will be glady asepted and some lady wrote me and i lost her email addrees accidently delite it please write me back , my nick name is abby , but im ivallean thank you sincerly .
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   09-03-04 21:34

Hi Abby,

Welcome to SarcInfo. Sarcoidosis is a systemic disease. That means that it can affect any part of your body. Some people get the sarcoidosis inflammation in their saliva glands. This can cause pain. If there is inflammation in your brain, it can cause seizures also. If the inflammation is in your eyes, it can cause too much pressure and you can lose your sight. The inflamed tissues make a hormone called 1,25-D which causes memory loss.

The Marshall Protocol can help all these symptoms. It may be difficult but you will need to read the patient tutorials and take the papers for physicians to your doctor. Ask him to help you try this safe, new treatment.

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: - My Sarcoidosis - personal stories and perspectives
Author: Deb (---.lgca.org)
Date:   09-27-04 10:14

It is interesting to read this info and realize that we probably have been living with this disease all of our lives. I was always a child with a stryp throat. Always had less energy than my siblings and enjoyed staying indoors rather than outside. In high school I had lymph node enlargement in my glands and "pus sacs" in the tonsil area so at 18 they removed my tonsils. The chronic cough began at that time. During college I had such terrible fatigue I was sure I had mono each and evry year and they always dismissed it. Coughing so bad & allergy tests revealed no problem. They made me feel like I was making this up. I had a history of chronic lumps in my breasts which they said was related to my "cycle".

At age 25 I had an ovarian cyst the size of a grapefruit and after it's removal have had terrible pains in my abdomin area.... again they thought it was in my head. I also experienced shortness of breath and they did many EKG's and holter monitors to rule out heart disease, eventually have a heart cath, etc... (My heart rate can go to normal to abnormal in a period of minutes. I had what I thought was arthritis in my joints but they determined not possible. I lived with constant sinus problems and severe coughing.

In my 40's I developed Menniers (vertigo) and hearing loss, carpol tunnel both arms, numbness in both arms, herniated disks,numbness in right thigh, pain in feet making walking intolerable, start of osteoporosis, severe headaches and finally at 47 they found the enlarged lymph nodes in my lungs and biopsy determined sarcodisos. I have never felt good, always kind of under the weather and the last 5 years my quaility of life has been diminished. I always felt sick in the sun, when I went to the doctor I always complained that when he checked my eyes with the light it brought severe pain in my left eye..... they never new why. Perhaps doctors need to recognize that the many pieces and parts could have easily determined our illness. I started the protocol yesterday with the Benicar every 8 hours and I feel a nervousness and a huge sense of "I new it wasn't in my head".

Thanks for all that you do, Deb
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-27-04 13:13

Congratulations, Deb,

I'm glad you have gained this much information. We understand that sense of knowing it wasn't "all in the head." Medicine has a long way to go in educating medical professionals about this disease, and we are doing all we can.

After a few months on the Protocol, you will know exactly the symptoms related to sarcoidosis - as they begin to resolve. Please let us know how you progress.

Belinda
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   09-27-04 13:16

Hi Deb,
Most physicians do not recognize the many manifestations of this illness. Many of us haven't been well for years and yes, even dating back to childhood, we're the 'sickly' kid down the block. We are treated symptom by symptom, but never recover from any of them simply because it is all one disease caused by bacteria. Some of us are labeled hypochrondriacs by our physicians and/or slackers at work. Dr. Marshall has made a marvelous discovery that will help so many folks regain their health, the enormity of the ramifications are yet to be determined.

Keep us posted on how you are doing. It is a good feeling to finally know it isn't in your head.
Caroline
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Ann O M (---.as1.bay.bantry.eircom.net)
Date:   10-15-04 03:00

I am now being monitered for possible sarcoidosis, though no one seems to be taking it seriously except me. It was first considered because I had erythema nodusa and extreme swelling in my left ankle, but my chest x-rays are OK and blood tests show something unspecific.

I started looking further into it myself - although the doctor said to be careful about reading things on the net and scaring myself! My husband isn't showing much sympathy, whether because he doesn't understand, or doesn't take it seriously, I don't know, but I don't have anyone to lean on.

Reading these stories about how many of you had problems from childhood, like me, that would have been considered by others as stuff you just live with - food preferences, weight problems, menstrual problems, sun intolerance, etc. I am very intelligent and ambitious, but everything just seems so difficult.

I grew up with a mother who was always ill - rheumatoid arthritis, constant lung problems - and don't want my kids to go through what I did.

Maybe just knowing that it may be this may be enough to help me cope better. I was starting to wonder if I was a hypochondriac, or suffering from some psychosis from growing up with a mother who was always sick.

Can't wait to look further through this site. Thanks.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lottie (---.proxy.aol.com)
Date:   10-15-04 03:21

Ann O. M.

Welcome to SarcInfo.

You may be told that Sarcoidosis can and does go into remission on it’s own. It doesn’t. We now know that it is caused by bacteria that actually invade and live inside the very cells that are supposed to kill them. The Marshall Protocol is the only treatment presently in use that will assist your body in attaining remission.

Sarcoidosis can affect ANY AND ALL ORGANS in your body.

Please read all the information which is located at the top of all the pages. Read both patient and physicians information, and print out the information for doctors to take into your doctor on your next visit. Also, read the different threads, especially the ***starred ones, and their archived versions.

The more you read and understand, the better you will be able to help your doctor to understand about Sarcoidosis and the Marshall Protocol. Most of us have been most successful with our GP’s, as they seem to be more open to using the MP than the specialists. And, you will probably find yourself helping your doctor to learn and understand the Marshall Protocol.

Sarcoidosis causes dysregulation of the vitamin D. Read the information in this thread Hypervitaminosis D Symptoms and you may be amazed at how many of the symptoms you have.

Be sure to have your doctor order the D metabolites tests and others as noted in this article, "How does Doctor measure my ACE, and my D-metabolites?". Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN in transit and until testing is done. When you get the results, please obtain a copy, and post the actual numbers from the results on the thread *** My Vit. D and ACE Test Results ***, and we will help you evaluate them for your doctor. Do NOT accept the generalization that they are "within normal limits". We need the actual numbers These tests will show the amount of inflammation that is going on in your body. You already have biopsy proven Sarcoidosis, but these baseline tests will help as you progress on the Marshall Protocol, and also help you know when you are in remission.

In the meantime please avoid all forms of vitamin D in food, supplements and sun. You will be amazed at how much better you will feel. If you must go out in the sun, please cover up completely! Long pants, long sleeves, hat, scarves, and gloves. Also, obtain the NoIR glasses as indicated in this article Protecting your eyes in Sarcoidosis.

Here is information on Avoiding Vitamin D while on the Marshall Protocol. It is located on our sister site MarshallProtocol.com. As is the article Advice on how to approach your doctor at the Marshall Protocol.com thread, which you may find useful.

If you have difficulty finding a doctor who will assist you with the Marshall Protocol, please Post a Request for DOCTORS at MarshallProtocol.com, and the moderators there can access the list for doctors who may be more open to using the MP.

It is not unusual for doctors and others to not take us seriously. Generally, we don't look sick enough! But, this is a serious illness, and people die with it.

Please keep in contact, and ask any questions you may have after reading the material.
Best wishes,

Lottie
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-16-04 10:08

Hi Ann,

Welcome to SarcInfo. We often hear that patients have been told by their doctors not to use the Internet. Funny that they never tell them not to use the library because they might come across inaccurate information in a book. Most people, like yourself, are intelligent enough to recognize dubious information or will ask their doctor before they accept Internet information. This, of course takes extra time but the best doctors will welcome a well-informed patient, even one who has something to teach them.

The Internet is changing the dynamics of the doctor-patient relationship. No longer is medical information available only to those few who have access to a medical library. This easily accessed published/credible medical information on the Internet will greatly speed up the snail pace of medical change. The Marshall Protocol is a good illustration of motivated patients finding cutting edge medicine on the Web and asking their doctors to learn about it with them. Keep reading and asking questions. Your health depends on it.

Best,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Carol (---.proxy.aol.com)
Date:   10-21-04 22:36

I was wondering if most with sarcoidosis suffer vertigo? Also my ears get red and burn as if they are sunburned from time to time.Is this the meds or Sarcoidosis? Also is there a chat room for those of us that has sarcoidosis?
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lottie (---.proxy.aol.com)
Date:   10-21-04 23:03

Carol,

Yes, vertigo is common for people with Sarcoidosis. It comes and goes for myself.

Are you referring to Marshall Protocol meds? The "sunburned-like" ears could be a herx response. What medications are you on presently, how much and how often?

I'm sorry, we don't run a chat room.

Lottie
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: tom christenson (---.dsl.sfldmi.ameritech.net)
Date:   10-22-04 07:10

one more thing....i am a sun nut...i have been tan for years...the lesions that i have on my body are like white semi dry skin...not a lot but a few...and have been coming and going in different areas for awhile...top of my head too...my eyes have been watering for years...more than normal..who knows...always had allergic rhyonitus...but it has lessened as i got older...the question...i started eleimianting vitamin d from my diet...is the elimination of sun essential to the program?? thanks
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-22-04 07:38

Tom
You absolutely must stay out of the sun. You must also elimnate Vitamin D from your diet and discontinue all supplements. Just these simple steps can improve your symptoms in two weeks. You also need to protect your eyes from the sun and from infrared light, ie, your TV and computer monitor. Please read: Hypervitamintosis D Symptoms. We also recommend Noir sunglasses for both indoor and outdoor use to protect your eyes.
Caroline
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lottie (---.proxy.aol.com)
Date:   10-22-04 09:39

Tom,

Watering eyes are also a Sarcoidosis symptom.

And, Caroline is absolutely correct. You MUST stay out of the sun!

Lottie
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Jack (---.access.uk.tiscali.com)
Date:   11-13-04 12:19

Hello,

I wrote a long piece about my sarcoid experience, but
decided to send this summary. I was first diagnosed
with sarcoid in May 1982, from a routine chest X-ray.
There were no symptoms, but a couple of months later I
had a wet cough, and was treated with a blast of
prednisone and another unknown medication. This got rid
of the cough and flu/cold symptoms. I am still not
convinced these were actually sarcoid symptoms.

Nothing happened until about 1992, when I started to
have problems digesting food, with sensitive bowels,
and shortness of breath. This was diagnosed as asthma
without tests or examination. I was given brown
inhalers, but stopped using them with GP agreement as
they did not appear to make any difference. My lymph
nodes would swell up and then go away. Then in November
1996, I had a dry sarcoid cough, and was given an chest
X-ray. This pointed to sarcoid (finally!), and I was
given a brown inhaler. The thoracic consultant tried to
get a lung biopsy but failed. I then took prednisone
for 8 months (4 red ones three times a day). The side
effects were truly awful. After weaning I was clear of
the sarcoid and prednisone in June 1998. This left me
with half the normal lung function and pulmonary
hypertension, all due to the long period of time
between starting symptoms and getting the correct
diagnosis.

The sarcoid has now come back (perhaps with a different
bacteria), it is clear now that it returned in January
2004. The symptoms seem to last for a couple of weeks
and the go away for slightly longer. Since September,
the symptoms have been continuous. They include
continuous ache in the abdomen, loose unpredictable
bowels, fatigue, lack of stamina, feeling cold most of
the time, shortness of breath, loss of appetite, water
retention in the face, abdomen and legs.

I discovered the sarinfo.org web site on 1st November
2004. Immediately started to cut vitamin D from my
diet, and tried to keep out of the sun. After 2 weeks
the stomach pain has gone and I can eat more normally,
and my bowels are more normal. I still have water
retention, tiredness, breathlessness, lack of stamina.

Early December I will see the thoracic medicine
consultant, and hope that they have discovered the
Marshall Protocol, or are sympathetic.

Is there a source of information about vitamin D in
food. I am avoiding milk, and fish. But there seems to
be butter and milk solids in many manufactured foods,
are these sources of vitamin D?

Also, how much covering up in sunlight is necessary? I
go to work in the early hours of the morning and come
back in the evening. Both ends of the (usually
overcast) day are not totally dark, and I walk briefly
(perhaps 5 minutes) in semi light with the hood on my
coat over my head. And perhaps 15 minutes in a bus with
large windows. Is this enough to give me too much
vitamin D?

Also, if I am able to use ARB and antibiotics, will I
still be able to computer work? Should I plan for days
when I will be too ill to work, as a result of the
Herxheimer reaction?

Thank you for posting the results of your research.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Lottie (---.proxy.aol.com)
Date:   11-13-04 19:36

Jack,

First of all, you must cover up completely, and wear the NoIR glasses to protect your eyes when you are outside and the sun is still up. Even if it is overcast, the rays that cause our problems are able to get through the clouds. Even the short period that you're talking about can give you too much sun. The hood is probably very helpful though.

There is a lot of information that should help you on this page Avoiding Vitamin D and Sunlight, at our sister site Marshall Protocol.com.

Milk solids and butter shouldn't be a problem in other foods. If you can get milk that doesn't have added vitamin D, you can drink it. It's not the milk that's a problem, it's the fact that in many countries they add it for our "health". Eggs and fish oils are also a source of vitamin D. You should also check any and all supplements you take for D. Some may have D naturally, and won't always be listed on the bottle.

You will still be able to use the computer with the NoIR 10% sunglasses. I'm wearing mine now. You also need to be careful around flourescent lights, and wear your sunglasses when in stores or offices with them.

You may need to take time off from work if you have a bad herx reaction, but the beauty of the MP is that you can adjust the dose of antibiotics so that you can handle the herx.

Good luck with the thoracic consultant.

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: - My Sarcoidosis - personal stories and perspectives
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-13-04 21:12

Jack,

I would add to Lottie's reply that you can find information about foods containing vitamin D in another topic on this website, "Vitamin D levels in food." Butter in the US usually does not have man-made vitamin D added. Butter contains a small amount of vitamin D- from nature. Our advice is to read food labels, and avoid added vitamin D, which should be listed on the label. Also, avoid foods naturally high in vitamin D, such as fish and fish oils, liver, and egg yolks.

The fact that you have already had symptomatic relief, just by restricting sunlight should be quite encouraging for pressing on. In my opinion, 15 minutes on a bus with large windows can leave you too exposed - unless you are wearing clothing that covers your skin, gloves and the dark NoIR glasses. A brimmed hat would be advisable outdoors, too.

Seriously consider purchasing two pair of the NoIR glasses, as Trevor recommends. You can wear the lighter shades indoors when you use the computer, as long as you are sensitive to light.

If you and your physician decide to initiate the MP, plan to start the drugs on your vacation days or days when you have less responsibility. You should expect more fatigue and flares of your usual symptoms.

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: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-13-04 22:04

Hi Jack,

Welcome to SarcInfo. Thanks for sharing your story. It is, sadly, all too familiar. The prednisone you were given did not do anything to eliminate any bacteria. In fact, its immunosuppressive effects allowed your bacteria to proliferate. That's why you have relapsed.

Lottie and Belinda gave you excellent advice. I want to reiterate that avoiding sunlight and bright lights and wearing NoIR sunglasses is not an option. It is an essential element of the Marshall Protocol. You can continue to commute to work but you'll have to adopt the 'unibomber look'. 15 minutes on a bus with sunlight or daylight streaming through the windows will push the envelope of sun exposure. You should probably also use Ketoconazole 2% cream on your face. You'll find info in this link.

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: - My Sarcoidosis - personal stories and perspectives
Author: tom christenson (---.dsl.sfldmi.ameritech.net)
Date:   11-15-04 09:44

Hello to all you wonderful people, sharing your stories and sharing your knowledge with us all. I am on my husbands site and had to take a moment to thank you from a "caretakers"point of view,

I can't thank you enough for giving us a ray of hope. Tom has just begun the Protocol and I am overwhelmed at the support you offer and at Dr,Marshalls' generosity, What a great human being, if this proves to be the answer I will devote my time to making this info even more accessible. I will also shout out the competance and generousity of Dr. Marshall and all his helpers.

Thank you again , you are doing a wonderful thing with you time and efforts in all our behalfs. Hang in there and keep up the good work.


Gratefully,

Tom's wife
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   11-15-04 16:40

Hi
I just read that we can use Ketoconazole 2% cream on our faces to stop the production of Vit D by our skin? have i understood this correctly? Is it OK with the MP? If this is the case then it may help those of us that cannot avoid lights at work. Can i use this on my face?

regards
kev

Sarcoidosis 11 years, Lungs, spleen, lymph nodes. Fatigue, joint and muscle pain, difficulty breathing. Feb 03 D25 = 67nmol/L, D1,25 = 80nmol/L, ratio = 1.19, ACE 80. Started MP on Diovan Feb 03. Switch to Benicar Nov 04. Now at MP3. General Improvements
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-15-04 20:19

Kev,

We have passed along published reports that 2% ketocoanzole cream stops production of 1,25D by skin cells in response to radiation. Several of us here, on the forum, have used ketoconazole on a short-term basis, and noticed it stopped our usual reaction to sunlight exposure on the face. By the way, this is cutting-edge information, because it was only recognized a few years ago that human skin cells autonomously produce 1,25-D.

You should discuss the pros and cons of this therapy with your physician. Ketoconazole should not be used by pregnant or nursing women (which I realize doesn't apply to you.) We also do not know what the effect of long-term use would be. The usual length of ketoconazole cream application, as I understand, for its usual use, is four weeks.

The PubMed article explaining 2% ketoconazole cream's blockade of human skin cell synthesis of 1,25-D is here.

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: Pregnacy results?
Author: Michelle (---.client.mchsi.com)
Date:   12-17-04 19:29

Would One A Day Active Vitamins affect Fact Plus pregnacy results?
 
 Re: Pregnacy results?
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-18-04 08:45

Hi Michelle,

I'm afraid that question is out of the area of our expertise. You could try googling Fact Plus or asking your doctor.

Best,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Henry (---.proxy.aol.com)
Date:   12-29-04 21:41

My wife was dx in 1987 with sarcoid and it has been a real uphill and downhill ride. She has been on prednisone since the dx and has been on upwards of 50-60mg per day. They have tried remicade, immuran, you name she has tried it. They are now tring, as a last resort, cytoxin infusion. She had her first infusion on the 15th of Dec. and the next one on the 12th of Jan. We still have yet to find out what the benefits of this regime will be or is going to be. One Dr. said that hopefully we will be able to get her off the Prednisone but after all these years, I really doubt it. She now has uviatic glaucoma with 100% lost of site in the right eye. As of this date she still has her vision in the left eye and that is now being compromised with uveitis at this time. She sees top Drs. in St. Louis but what I am wondering is ---- has anyone heard of using chemo to help get the sarcoid into remission or cure it? Any info will be helpful.
Thanks.
Henry
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-29-04 22:12

Hi Henry,

Welcome to SarcInfo. I'm sorry your wife is so ill. Her medical history illustrates, sadly, how ineffective and toxic the standard treatments are for sarcoidosis. Chemotherapy has been used as a last resort but it does not help the disease.

The Marshall Protocol involves safe medications that are proving effective for hundreds of sarcoidosis sufferers. It's a shame that her 'top' doctors in St. Louis are not using it.

You can help your wife immediately by discontinuing all Vitamin D supplements, buying NoIRs sunglasses for inside and outside wear and avoiding all foods high in Vitamin D. These measures alone might make her feel a bit better.

She should have her D-metabolites tested asap. The results should provide her doctors with all the proof they need that she is has a dysregulated Vitamin D metabolism as a result of occult microbes and that treatment with the MP meds is the logical next step.

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: - My Sarcoidosis - personal stories and perspectives
Author: Fred (---.sympatico.ca)
Date:   01-17-05 21:07

It's interesting reading these comments. Especially the ones when the doctors think the patient either has nothing wrong with them or something totally out in left field.
While I was waiting for my appointment with my internist, I went to my family doctor on the advice of the docs at the ER.
This is what he thought I may have had....
HIV
Syphyllis
Henoch Schondlein Purpura
and get this...Scurvy.
Of course I got tested for HIV and syphyllis and they came back negative, but was he wrong or what? Scurvy, as if.
The problem is, not enough doctors know about it. I think it is up to all of us to MAKE them aware of it.
As for me, I have been off vit d for 7 days, and I feel a little less tired. I get insomnia still, but the lessening of fatigue is a god send. My joints are more sore though. My knee was full of water yesterday, for example, and my joints ache...nothing that I couldn't handle, just a painful annoyance really.
And for you milk lovers out there (like me...man I love milk), I work at a hotel and I talked to a dairy farmer and he told me there is definitely milk that has no vit d added to it, it's more expensive though.

Freddie

dx Nov 2004 -- EN JUN 2004, OCT 2004-- Eyes SEP 2004, FEB 2005-- Lungs (1) JAN 2003-- Joints JUN 2004 No VIT D Jan 11 2005 Skin lesions-July 2005 Fatigue since Jan 2005
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Charles (64.19.146.---)
Date:   01-18-05 12:17

Hello,

This is the first time I have been on this site, it is filled with a lot of information. I was told in 2000 I had Sarcoidosis after 2 years of test (as I can see is the norm if you have this illness). I was treated with pregnisone and been off it for four years. My lungs were the last to be effected Ididn't under stand why if thats where it starts, now I am having problems again and my doctor tells me I my have a problem with my heart and kidneys, I tried to reach my father since he suffers from Sarcoid also but no luck. I am very scared and don't know which way to go any help?
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   01-18-05 14:03

Hello Charles,
Welcome to SarcInfo. You have come to the right place to put your sarcoidoidosis into remission. I too have had cardiac invlolvement in the past and the MP has completely eliminated those symptoms.

Sarcoidosis does have a familiar relationship. How long did you take prednisone and at what dosage? Prednisone is absolutely the wrong treatment. You are then compromising your immunne system which then in turn allows the Cell Wall Deficient bacteria. which is the cause of sarocoidosis, to grow and multiply.

First begin by elinating all Vitamin D from your diet and protect all exposed skin from sunlight. You will also need ot protect your eyes from UVA, UVB and infrared light with Noir sunglasses. Many times these simple steps will bring noticable improvement in your symptoms in as little as two weeks.

You will also need to have your doctor measure your D metabolites. Please read "How does Doctor Measure my ACE and my D Metabolites?".

There is a wealth of information to found here and at our sister site www.MarshallProtocol.com.
I am sending you further information, please check your inbox.
Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Katina (---.pioneernet.net)
Date:   02-15-05 12:08

I have'nt been on here in awhile but my daughter who just turned 13 last week has had sarcoids for about 2 years and was only diagnosed last summer. This hasn't effected her lungs and the lesions that were in-indating her Liver, Kidneys, Spleen, & Lymph nodes have started to clear up with Methotrexate. Though her doctors are adimate she is getting better she still goes through days of painful spells primarlily with sharp chest pains and left side aches. Not limited to this she has complained about pain in her back, leg, arms and hands as having UVeitis on and off for the past 2 years. When she is in these painful stages nothing seems to help and I'm lucky if I can get a doctor to return my calls. I'm getting very frusterated and want someone to give me some answers. They refuse to do the Marshall Protocal and are the only Children's Hospital in the NW that has a Children's Rheumatology Dept. When I tried to get a 2nd opinion a doctor told me pursuing the Marshall Protocal would be putting my daughters life at risk and that contemperary treatment was the only option to get her out of harms way. After arguing with her and reciting much of the literature I've read on their contemperary/harmful treatments she hung up on me. Can anyone give me any incite to these particular symptoms (especially her sharp chest pains often followed by a burping feeling) or advice as to what direction to take
Please & Thank You,
Katina & my daughter Tatiana
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: beverly (---.client.comcast.net)
Date:   02-15-05 17:59

Reading through some of the links, I wonder how much of these symtoms could be somehow related. I keep thinking BACTERIA, BACTERIA, BACTERIA

I had a tragic childhood that resulted in my being orphaned at age 11. The household I grew up in made me crazy and sick. Migraines, had parasites as a child, chronic sinus, pneumonia many times, bronchitis, type a personality, many dysfunctional relationships, stress, stress, stress, shingles, shingles across eye resulting in iritis, herpes simples, allergic to about 50% of everything, carpal tunnel, sore spots when I would touch my arms and legs, blood poisoning and stitches from playing sports , developed sarcoid in 82 that started with a squeak in my chest. Routine physical showed abnormal xray and biopsy confirmed. Two years on prednisone starting off with 80mg and then develped asthma when I tried to wean off of it. I asked for a copy of my blood tests and my doctors office refused to give them to me in 82. The doctor accused me of being adversial with her office staff and I told her..."I find it amusing, you put me on mind altering drugs that are an emotional roller coaster and you accuse me of being adversial". She wrote me a letter and told me I needed to find another doctor. Also have those shiney scaley places on my arms and legs....thought they were old age creepers Started getting really sick the past two years again constantly. One year ago a hornet stung me in the throat and in 2 days I was sick as a dog with flu like symptoms. Shortly afterwards the COUGH started and did not let up all last year. Last three months thought I was dying a slow agnozing death. Now eyes are sensitive but may be due prednisone that I started last week to keep from drowning in my own mucous. I have noticed that my skin on hands seems to "prickle" when out in the sun. I am mad as hell and am not going to take it anymore. I made a promise to live to be 86, I guess I should have thrown in the disclaimer......something about a healthy 86.

No response required-just wanted to add my two cents.
Bev
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-15-05 21:33

Katrina,

I'm glad you've returned but I'm sorry to hear that Tatiana is still so sick. Methotrexate is a weak antimicrobial with a high risk of liver damage. I'm surprised her doctors would use it considering that she already has liver inflammation.

It sounds like her doctors are being optimistic in the face of evidence that Tatiana's sarcoidosis inflammation is still very active. As we've discussed before, her only hope for recovery is the Marshall Protocol.

You have the advantage of not living too far from a doctor who specializes in the Marshall Protocol and will treat children. I urge you to do whatever it takes to get Tatiana there and on the road to recovery. If you need the doctor's contact info sent again, let us know.

I've asked Margo to respond to your post to tell you how much her 13 yr old daughter has improved during the past two years on the Marshall Protocol.

Best,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-15-05 21:36

Beverly,

I like your spunk. If you want to recover from your lifetime of debilitating sarcoidosis symptoms, I hope you will consider trying the Marshall Protocol.

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.

Best,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author:  Lee (---.ma.seidata.com)
Date:   02-16-05 08:09

Bev.....sheesh you have been thru it!! I can identify.....had less than an "ideal" childhood myself. I was diagnosed with "ricketts" at the age of 5...along with getting all the childhood diseases....I got some twice....
My family was upper middle class too.....but what a bunch of nuts they were! I was so mentally abused at most meal times I could not eat. I would crave foods later and have to sneak them.....and possibly get "corporal punishment" if caught! I took up eating "chalk" to satisfy some cravings. I would even make a "shake of chalk" to drink!
Later in early adulthood I studied and even taught nutrition in order to free myself from those beginnings!
I too have been treated "ill" by physicians especially the specialists since getting sarcoid myself. I just kept trying(and refusing steriods) as I had a very bad reaction and reasoning till I got one family doc to help me with the MP....I am still just on the Benicar (3rd week) but what a difference in my LIFE!!!
I have hope....and I just know this is going to work for me.
I am not a kid either....56 in fact.....but I have an aunt going on 100 and I want to tag along with her.....LOL!!!

Sarc w/ Lofgren's +Lung Damage 11/04
Labs-ACE-68 CRP)+(H) Ionized Calcium-5.32
Narrow Angle Glaucoma w/ vision loss Sed Rate-13
Hashiomotos(armour90mgs)w/ TSH-25.22 FreeT4-0.35 Vit D ratio-2.13
2/05Benicar2/22/05Mino 25mg3/8-50mgs minoTSH-0.93
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: beverly (---.client.comcast.net)
Date:   02-16-05 16:07

I am also 56 about to turn 57 in May. They say that Geminis are ruled by their lungs. I forgot to mention the side affects which are currently really bothering me...I left out vertigo, red flushed face, spasms in my diaphram which sometimes turns me into a stutterer....happens when I try to talk or lie down flat on my back, pain under right breast at bottom of ribs which seems to be moving around to the back under my shoulder blade and side at times, and pain like something is stuck inside middle of chest. The coughing frenzies at times made me feel like my heart was going to burst. I took my catscan to work today and looked at it over a light table. I am not a doctor but from what I have seen on the net, I see a lot of diseased tissue in my right lung. Now I am REALLY concerned.

Bev
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-16-05 23:03

Beverly,

Dr. Marshall's 36 years Xray history is online at http://sarcinfo.com/xrays

You will see that he had severe pulmonary fibrosis. The Marshall Protocol has improved his pulmonary function tests and relieved his pulmonary symptoms.

You can recover too if you ask your doctor to help you with the MP.

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.

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: - My Sarcoidosis - personal stories and perspectives
Author:  Lee (---.ma.seidata.com)
Date:   02-18-05 08:45

Bev.....please listen to Meg!!!
I am a big "chicken" and If I can do this you can too.....
I went back to my good ole family doc....that had NO idea what was making me sick to begin with.....but apologized since and said....I quote" good grief....and thats one of the first things I learned in med school is to consider sarc when the symptoms get as whacky as yours"!
He also praised me for going out on the net to find the information I need to fight this battle....MP!!!!
Remember to I am only 3 1/2 weeks in......and already see a huge difference!
One rheumy told me my cat scan looked like "cottage cheese"......
So....we will show'em!!!
Better Health to us all!!!

Sarc w/ Lofgren's +Lung Damage 11/04
Labs-ACE-68 CRP)+(H) Ionized Calcium-5.32
Narrow Angle Glaucoma w/ vision loss Sed Rate-13
Hashiomotos(armour90mgs)w/ TSH-25.22 FreeT4-0.35 Vit D ratio-2.13
2/05Benicar2/22/05Mino 25mg3/8-50mgs minoTSH-0.93
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Katina (---.pioneernet.net)
Date:   02-22-05 17:45

Thanks Meg,
I would love to hear how Margo's daughter is doing and have been searching for that Doctor's phone number & address so if you could resend it to me that would be great.
Sorry for the late response but I was fighting with the Hospital about me briniging my daughter in if I didn't get a callback because she had been having 3-5 day bouts of pain and was in the midst of one and I wanted something to be done. They did callback later that evening and scheduled me with the doctor on call the for the next day.
I then spent 2 days in the Hospital with her (they admitted her on the spot, I didn't even get to go home to get our things). They have now added Prednisone with the Methotrexated to ease her pain and they are now talking "Fibromyalsia" as well, correct me if I'm wrong but isn't that another name for unexplainable pain...?

Thanks,
Katina
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-22-05 19:27

Katina,

I'm so sorry your daughter is being given the standard treatments for sarcoidosis. At her tender age, the long-term consequences are inevitable and may prove worse than the disease. Did those doctors give you "informed consent" about the risks involved? Please read this thread on avascular necrosis Prednisone can destroy her hip joints in as little as one month. And prednisone the false cure.

You are right. Fibromyalgia is a syndrome, not a disease. IMO, it is just a fancy name for "we haven't a clue what's wrong with you or what to do about it". Her pain is due to sarcoidosis and won't go away until the underlying cause, Cell Wall Deficient bacteria is eliminated with the Marshall Protocol.

I'll email you that doctor contact info. For your daughter's sake, I hope you follow up on it. I'll ask Margo to respond also.

In the meantime, you can insist the the doctors provide your daughter with adequate pain medication. It is her right as a patient.

Give her a gentle hug for me,

Meg

P.S. There is a special forum at MP.com for parents that you should find very helpful.
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Katina (---.pioneernet.net)
Date:   02-23-05 09:35

I appreciate that, I clicked these 2 first links for Avascular necrosis Prednisone can destroy her hip joints in as little as one month. And "Prednisone the false cure but both the websites say this document is No Longer Available.
NO, my doctor has not informed me of the risks, I have noted my concerns and recited many of these study's on several occasions and they pacify me with me the fact they run periodic test to make sure these are not damaging her Kidneys or Liver. I have made it very clear that I'm not happy with her treatment but have gotten little response and have been told that I have No other option without putting her life at risk... I will start posting on the other website as soon as I get my link. I also noticed a conference coming up next month, is this only for Doctors?
Thanks,
Katina
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Margo (---.dsl.intrex.net)
Date:   02-23-05 10:07

Katina,

I, too, have a thirteen year old daughter with sarcoidosis. We also tried methotrexate, which may have helped a bit to keep the inflammation under control. However, after a year on methotrexate, the systemic symptoms were unchanged. Her more serious problem, chronic eye inflammation (uveitis) was under control with four-five drops of steroid a day (the same as pre-methotrexate). The doctors said that the methotrexate had kept the eye inflammation from getting worse – but, who knows if that is really so? The steroids were also making her cataracts progress rapidly.

After much difficulty, we found doctors who would prescribe the MP for her. Quickly, her systemic symptoms got much better – problems such as trouble falling asleep, frequent urination, irritability, stomach pains, and tremendous fatigue, constant headache.

Now, after about 1 ½ years on the mp, her lung function tests are back in the normal range, her eye inflammation is decreased (we are progressing through the MP antibiotics, and expect to see more benefits), she has much more energy. Her blood levels on several markers which were very, very high before the Marshall Protocol (such as alkaline phosphatase) are now back in the normal range.

If you would like some suggestions of doctors to see, please post a request on the thread, “I need a doctor-Help”

There is also a forum for parents at our sister site,
marshallprotocol.com.

The conference is for both patients and doctors. I will be going to the conference, and would love to meet you there.

Margo
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Katina (---.pioneernet.net)
Date:   02-25-05 08:59

Margo or Meg,
I stumbled across that conference and now I can't find it again, can you please send me a link to it so I can check it out, I think I might be in TX that week already. I am going to take my daughter to the Dr. using the MP and will be soon changing my medical to get it covered.
Margo like your daughter mine has also had UVeitis off/on for the past 2 years but has been clear for about 3mths which they also think is due to the Metho. They believe that she originally started with Neuro-Sarc because of her 2 Facial Paulsey's, UVeitis & her whole body was sore, but they couldn't find any lesions. After about 6 mths on high dose steroids she went into Remission and was symptomless for 4-5 mths (at that time they had not diagnosed her). When her symptoms started to come back there was nothing neuro and fortunately it has not yet effected her lungs but she did have nodules in both Kidneys', Liver, Spleen, Lymph Nodes and they said that there was originally allot of inflammation around her Aortic Valve. On her last CT (last week) these were all clearing up but there was still some inflammation around the Aortic Valve but they said they weren't concerned because it was getting better. My daughter has had Chest Pains off/on since day one and has nothing in her lungs so they can't give me any answers as to what is causing this???
Thanks,
Katina
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-25-05 18:50

Katina,

The registration form for the conference is online here. There is also information in this SarcInfo thread and this MP.com thread.

I'm so glad to know that you will be taking your daughter to a doctor who is knowledgeable about treating sarcoidosis with the Marshall Protocol. A small percentage of sarcoidosis patients do not have pulmonary involvement even with other major organ involvement. The fact that her CT scan is clearing up means little because relapse is inevitable unless the bacteria are eliminated.

I hope you'll be able to attend the conference. About 18% of the attendees will be physicians.

Best,

Meg
 
 Re: - My Sarcoidosis - personal stories and perspectives
Author: Katina (---.pioneernet.net)
Date:   03-07-05 07:58

Meg,
Thanks I reviewed it again but unfortunately I will be leaving for Houston that sunday for a business trip. I would have loved to go to something like that and will keep my eyes open in case the opportunity comes up again....

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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