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-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.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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 Sarcoidosis and pregnancy, etc...
Author: lola (---.tnt2.midland.tx.da.uu.net)
Date:   01-18-03 07:29

I noticed that there was a warning on the minocin that birth control would be ineffective during the duration of the therapy. This is fine with me; however, I am experiencing a need for the hormone in the pill due to break- through bleeding and mood levels taking a nose-dive.

Has anyone experienced this and if so, how did you treat it?

I was diagnosed with Sarc by default, according to the pulm doc. Virtually assymptomatic, shortness of breath sent me to the doc in the fall and biopsy results ruled out everything else. All the inflammation is internal: mediastinum, spleen, and ureter.

Also, after therapy we may try to get pregnant. Is it wise to become pregnant with this disease?
 
 Re: birth control pills & minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-18-03 08:05

Iola,

Have you or your doctor considered sarcoidosis as a possible cause of your break-through bleeding? This type of abnormal bleeding has been found to be a symptom of sarcoidosis. It is also reported in this abstract and this one. Sarcoidosis can cause uterine bleeding even in women who have gone through menopause.

I know it is supposed to be uncommon, but after private email discussions with other female sarcoid patients, I realize that several of us have had bouts of abnormal menstrual bleeding, so I offer that for your consideration. Your situation may be different, I understand.

Mood swings, irritability and mental confusion are symptoms both male and female sarcoid patients are attributing to high levels of 1,25-dihydroxyvitamin D. You can begin right now to avoid sunlight and vitamin D foods, to see if that helps. Didn't you have your blood levels of active and inactive vitamin D tested?

You can read a recent report on sarcoidosis and pregnancy here. You must be aware that some drugs that doctors prescribe for sarcoidosis, such as methotrexate and antimalarials, are not to be used in pregnancy. Prednisone also is known to slow growth.

Belinda
 
 Re: birth control pills & minocin
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-18-03 14:18

Belinda,

You are the wonderwoman of research! Thanks for touching on a delicate subject that may be of interest to many. Given the incidence of abnormal uterine bleeding, this may not be as rare as suggested and could provide an available source of biopsy tissue. I will go armed with this timely information when I see my urogynecologist in a couple weeks.

Meg
 
 Re: birth control pills & minocin
Author: Kathy Black (207.6.43.---)
Date:   01-18-03 17:31

Belinda and Meg
This is an example of what you have previously mentioned and I hope it will help others.
After starting Prednisone at age 51, I had no period for many months (I was not in menopause). As I reduced the dosage, I had constant bleeding. At first Dr. thought it might be due to lack of progesterone, so I took some for 10 days & bleeding stopped. A couple of months later, it started again. I was slightly anemic. A biopsy revealed severe hyperplasia with atypical cells and I required a complete hysterectomy. The pathology report revealed a number of problems (no cancer) including non-caseating granulomas in fallopian tubes, cervix, myometrium & endometrium. ZN stains of the foci of granulomatoius inflammation revealed a rare acid fast bacillus, consistent with disseminated mycobacterial infection, such as turberculosis (Admin: and sarcoidosis)
Kathy
 
 Re: birth control pills & minocin
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-18-03 17:39

Kathy,

This is very good information. Thank you for explaining it. I know there are a lot of us who wish we had known this years ago, before we had dilatation and curettage, for example. Many people will be able to use the information you shared from your experience.

Trevor will be writing more (later) about ZN staining of biopsy tissue.

Belinda
 
 Re: birth control pills & minocin
Author: Jane (---.ap.plala.or.jp)
Date:   01-19-03 00:10

Belinda and friends

It may be of value to post the address of the full text of the Cleveland Clinic report:
http://www.medscape.com/viewarticle/444328_print
It gives a list of presenting symptoms more diverse than that covered in the discussion above.

For the record, I have a history of menorrhagia and am pleased to report that it resolved following antibiotic therapy last year.


Jane
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Diana (---.cache.pol.co.uk)
Date:   01-23-03 05:41

The jury is still out as to whether I have had sarcoidosis since 1978 without knowing what it was, but I have had break-through bleeding for a couple of years while on HRT (since age 39, after hormone levels showed an imminent early menopause and I was also found to have osteoporosis). This resulted in a hysteroscopy two days ago, during which "inflammation" was found. I biopsy was taken, and I asked that it should be looked at with sarcoidosis in mind. I am hoping that I might then escape having to have a biopsy from my lungs if a CT scan of them next week indicates biopsy.

As far as pregnancy is concerned, I have had 3 children from two pregnancies (now aged 12 and twins of 9). My health problems over the years have been severe (the worst probably being paralysis from the chest down since 1979), but my symptoms actually decreased during pregnancy. Not knowing the cause of my difficulties has meant I have never been on any drugs, but I can see no reason why anyone who wants a family should not try for one. My warning would be to do it sooner rather than later though. Sarcoidosis can bring on an early menopause!

Diana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 06:09

Diana,
When you get your D metabolites tested and you will no longer need a jury, it will be pretty obvious if you have systemic inflammation.

The hormone 1,25-D is produced in the placenta in large quantities. I expect it would make life miserable for a mother who has sarc.

Why do you say Sarcoidosis can bring on an early menopause? I have never seen anything about that in the literature? Do you perhaps know folks that have had this problem?

..trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Diana (---.cache.pol.co.uk)
Date:   01-23-03 09:34

Trevor,

It was realising that various websites said that rare causes of infertility or early menopause include sarcoidosis, and the fact that sarcoidosis was a contender for many if not all of my other problems, that made me and the doctors first consider it as a diagnosis at all. I cannot remember the name of the site with the most information, but just now I did Google searches on "sarcoidosis" in conjunction first with "infertility" and then "early menopause", and various mentions were thrown up.

If sarcoidosis gets at the pituitary gland then there certainly can be infertility problems. For example, Chapter 144 of the Merck Manual is about Pituitary Gland Disorders, and mentions sarcoidosis in the part about Hypopituitarism. There are also reports of ovaries being directly affected. Obviously infertility and early menopause are different, but they both apparently occur.

I have written to my consultant about getting D metabolites tested, but there has not yet been time for him to respond. If he doesn't by remote means, I will persist when we next meet.

I have also found various reports of improvement during pregancy!

Diana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-03 12:00

Diana,
Send your consultant a copy of the British Medical Journal publication at this URL to help him/her understand the importance of the D metabolite issue.

I guess that I always assume that a sarc patient would take immediate steps to lower their 1,25-D level before it could unbalance the thyroid or the pituitary, and to correct any problems any earlier elevation may have caused.

These are reversible hormonal actions, rather than some physical or invariant damage. I keep forgetting that Merck, for example, was printed in the days when it was thought the sole purpose of 1,25-D was to act in concert with the body's calcium metabolism. There is so little solid information out there unless you use the PubMed search at url http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=&DB=PubMed
For example this reference talks about some of the issues of pregnancy and 1,25-D.

Thanks for your thoughts, and let us know when the D results are back.

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-24-03 01:50

This message was posted by Alison, but it fits on this topic, so I moved it here.

"Does anyone know if Adenomyosis ( a form or endmetreosis) is related to Sarcoidosis?

Just wondering.........

Alison"
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-24-03 01:59

Alison,
Did the pathologist who suggested "Adenomyosis" know that you had sarcoidosis?

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Jane (---.ap.plala.or.jp)
Date:   01-24-03 07:26

Alison

You might find it helpful to peruse the Cleveland Clinic study that I posted a link for on January 19th since Adenomyosis is listed under "Concomitant Pathology" for one of the sarcoid biopsies reviewed, indicating, I think, that it is a pathological condition distinct from the granulomatous inflammation of sarcoidosis. If you are unable to access the paper through that link, Belinda posted a link to an abstract of it under "This type of abnormal bleeding" on January 18th. Hope this helps.

Jane
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-24-03 08:46

Alison,

The types of abnormal bleeding I was talking about were 1)vaginal bleeding between regular menstrual cycles and 2)heavy menstrual flow. These can be related to sarcoidosis.

Adenomyosis is "an abnormal thickening of the endometrial lining of the uterus," but it occurs when endometrial cells are found in a place they don't belong (outside the endometrium), so it is a form of endometriosis.

Adenomyosis and sarcoidosis tissue cells look very different under a microscope.

Microscopic picture of Endometriosis
Microscopic picture of Adenomyosis (showing endometrial cells)
Microscopic picture of Sarcoidosis (showing non-necrotising granuloma)

Belinda
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-06-03 14:55

Lisa posted this on another thread, but it fits better here.
Belinda

Author: Lisa (165.252.84.10)
Date: 02-06-03 14:38

Is it safe for a Sarc patient to get pregnant.
How would the a Sarc body re-act to this condition?

Have there been any studies done on this?
Will the baby have Sarcoidosis? Will the inflammation lessen/worsen?
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-07-03 08:12

Lisa,

You can read through the posts on this thread and get a lot of information. Basically, the research I could find indicates pregnancy usually goes to term with no problems. You need to be aware that some of the drug therapies (methotrexate, anti-malarials, Thalidomide, etc. ) normally used for sarcoidosis are contraindicated in pregnancy. Oral corticosteroids increase the risk of cleft palate.

We know that in pregnancy, the placenta manufactures 1,25-dihydroxyvitamin D. This is in addition to the 1,25-D produced by the sarcoid activated macrophages. High levels of 1,25-D can cause increased somnolence, fatigue and symptoms such as joint pain and breathing problems. The 1-25-D (calcitriol) levels increase throughout pregnancy in normal women. The level of 1,25-D is highest in the third trimester and falls soon after delivery in normal women.

If I were contemplating a pregnancy, I would first find a doctor who would evaluate my vitamin D and ACE levels and work with me on a course of antibiotic therapy and angiotensin-receptor blockers. Then, through the pregnancy and for the few months post-partum, I would ask my doctor to monitor any flares by evaluation of my vitamin D and ACE levels.

In addition, I would plan to stay indoors in the daytime for (at least) the third trimester to minimize my vitamin D. My experience was that I walked outdoors a great deal while I was pregnant. I suffered a flare in symptoms (fatigue, skin lesions and joint pain) after the birth of my early August baby, and it was several months before I felt better. Sarcoid patients can have significantly increased levels of 1,25-D in the summer. I did much better with my second child, who was born at the end of October, when cold and snow kept me indoors post-partum.

This study reports that increased serum 1,25-D levels persist through lactation. Consider extending the sunlight avoidance if you decide to breast feed your baby. One more thing: I found my first "lump" (in my breast) when my August baby was about 4-5 months old and my child was weaned. When the lump was removed, I was told it was not cancer and not related to breast feeding. About that time, I went on oral corticosteroids because I could barely bend my fingers and my skin lesions on my hands and fingers were bad. I share that in hopes the information will help someone else.

You can print out all these articles for discussion with your doctors by clicking on the bold text.

Belinda
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Bastiana (---.dial.wxs.nl)
Date:   02-12-03 02:27

Trevor,

For Annemarie and me (45 years of age) the meno-pause as been a item too.

Actually I thought being in the meno-pause: but since I am on minocycline, I have had a very normal peroid. And now I already have the second one.
Exactly in the same rythm as it used to be: 21 days. The first bleeding was a little excessive, the one now feels completely normal!

And I still have this other question for you: I was diagnosed with a watercyste in my left bosom. I clearly feel the connection between all the bubbling in my body since reactivated. I thought it connected with the bubbling in my spleen, but the pulmonary thought the place I pointed at was my small intestine. Well whatever it is: it is connected. Now going into remision, I feel stiches of pain. Is it going away?

But my pulmonary states it has nothing to do with sarcoidosis....

Well, but it 'suddenly' appears along with this....what IS it then? Another department of the hospital lifting there browes: we have absolutely no idea..?

I wonder really who makes a mystery about what here...

Regards Bastiana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-12-03 04:31

Bastiana,
There is a thread here on "Cancer Diagnosis in Sarcoidosis" which talks about the difficulty that Cancer Specialists have in thinking that Sarcoid lesions are cancerous when they are not. It may help you uderstand the cyst better.

Please also read Alan Cantwell's book, The Cancer Microbe, for an excellent explanation of why this confusion arises, and make sure the Doc who is worried about your cysts understands that it is most likely to be benign, and that they need to be VERY careful to get a good biopsy before assuming otherwise.

..Trevor..
ps: Great to hear that Minocycline has brought back your periods again. It really has given a "new lease on life".
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Bastiana (---.dial.wxs.nl)
Date:   02-12-03 06:17

Trevor,

Thank you for the link to the cancer part.

Dr. Cantwell said that he had sent the book, but I didn't receive anything.

Actually not any doctor is concerned about my cyst. I put calendula on it, when I go to bed. I take cardiodoron for the heart, (which can be bought in any shop here) and a supplement: garlic, mistel, mayflower with vitamin E. My own invention for your ARB's, which of cource is ridiculous. But it works very well.

Sometimes I have the feeling of being in some kind of surrealistic landscape with my illness. If I read through the threads of this site, I am stunned by the amount of doctervisits, researches, medication you all go through...I feel like the cheapest sarc on this planet!

I must say that I refused twice to have a second opinion in Maastricht. But I thought: they'll put me under all kinds of machines, what can be the use of this? Besides I was so weak, that I even couln't make the travel to Maasrticht. As am doing so fine on the minocycline, I think it is completely redundant.

All doctors have been doing to me untill now, is to confuse me.

I feel the cyst very much in connection to the whole what is going on, and my docter sais it has nothing to do with it. But neither she gives any leads or references what I should do then...So? I am alone with my cyst! The only thing I can to is embrace it!

Regards Bastiana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Wendy (166.36.144.---)
Date:   02-21-03 05:43

Last year I was pregnant, at the beginning of my second trimester I experienced severe swelling in my ankles that caused significant pain, at times I could not even walk. After seeing my Ob. and primary care physician I was sent to an arthritis specialist. I was diagnosed with Sarcoidosis and prescribed prednisone, which worked well. I took it for several months, and then started to decrease the dosage as I neared my due date.

At 36 weeks into the pregnancy, I experienced a placenta abruption. An emergency c-section was performed. I lost my baby during birth. I stayed in the hospital for a week to recover. I needed blood transfusions because of the abruption and because my body took a long time start producing it again.

After the surgery I asked the arthritis specialist if Sacoidosis could of have caused any of difficulties I experience, the answer was no.

Well, I’m trying to have a baby again, I have just completed my 13th week. I am noticing what I believe are signs of Sacoidosis (erythema nodosum) again. I have made an appointment to see the specialist again.

Is there any precautions, tests, or questions I should be addressing as I go forward? Last year was devastating for both my husband and myself, to relive it would be a nightmare.

Wendy
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-21-03 05:56

Wendy,
There is nothing really puzzling about your experiences. If you print out for your Docs the "New Treatments Emerge.." from the "Papers for Physicians" at the top right of this page you will note graphs showing that the hormone 1,25-dihydroxyvitamin-D is usually at excessive levels in sarc patients.

This is because the hormone is manufactured in the sarcoid inflammation.

During pregnancy it is also manufactured in the placenta.

You need to get your D metabolites measured ASAP, and then you can review and strategize what might be possible.

The most obvious therapy is to strictly control your intake of Vitamin D and sunlight in order to keep your level of 1,25-D within the normal range. That way you can avoid prednisone, with all the dangers it brings.

But this is all pretty new knowledge, so I hope one of your Docs is open to learning about the latest medical technologies. Otherwise you will just be facing blank stares...

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Vickie (---.gci.net)
Date:   02-22-03 20:30

Wendy, I just wanted to say that I'm so so sorry. You have my best wishes for a healthy pregnancy this time; I can't imagine the heartache you must have gone through.

I'm a nursing student and childbirth educator (and future midwife) and I looked in my drug book and I cannot believe they put you on Prednisone, a Clategory C drug. I'm wondering if the drug had any effect on your pregnancy. Are there any other drugs that are safe during pregnancy that would do what you need them to do? (That's what I'd be asking).

BTW, hopefully this encourages you: I had a healthy pregnancy with Sarc (didn't know I had Sarc due to a misfiling of my ACE levels by my pulmonologist). So it is definitely possible.

If you weren't pregnant, I'd recommend minocycline treatment for you, assuming of course that what you have is Sarc. However, you can't take tetracycline type drugs during pregnancy. It's very bad. But once you have the baby, unless you're breastfeeding you should be able to take them safely.

By the way, do you have any symptoms when you're not pregnant??? Because if you only have them during pregnancy, I'm starting to wonder if it's not something besides Sarc.

I'm wondering about seeing a more holistic type doctor (even a naturopath). Armed with the information provided here, they might be able to help you manage this pregnancy more safely than using drugs that can harm your child. There are probably vitamins and herbs that will help support your immune system (and pregnancy) to get you through the next 27 weeks.

Other than that, watch your D intake (especially since I'll bet prenatal vitamins are LOADED with them).

Best of luck you you, Wendy. I hope this pregnancy goes beautifully.

Vickie
 
 Re: Sarcoidosis and pregnancy, etc...
Author: E (---.brndml01.va.comcast.net)
Date:   02-23-03 08:00

I hadn't entered this thread until now, as I'm through with being pregnant. But I've always wondered if some of my earlier health and medical issues are somehow tied to sarcoid. Diagnosed in '97, I believe it started in me well before that. My lungs were very much involved by the time of the diagnosis. My parents had my tonsils removed when I was a child, because I was always getting sick with bronchial colds. Back then they routinely did tonsillectomies. Even after the tonsillectomy, I got what I thought were colds very frequently - coughing, malaise, fever, etc. I seemed to have a chronic predisposition to bronchitis-type of colds and always trying to suppress a cough. I think the sarcoid had started quietly a long, long time ago.

My first pregnancy ended with a Dec. baby - after a few weeks I was still hemorrhaging heavily. I had a D&C and the OB said that my uterus was hanging on to placental tissue - hence the bleeding.

My second pregnancy ended with an August baby 3 1/2 yrs later - different location. I told new OB what had happened with first pregnancy and he said he'd try to clear it all out after the birth - but I still ended up with extended hemorrhaging, then a D&C - retaining placental tissue again.

Third pregnancy unfortunately ended in a miscarriage. I had already been to (yet another new) OB for the first couple of pre-natal visits, and was thrilled about the baby. I started bleeding heavily, many clots, feeling very ill. It was not normal at all and doc confirmed I was losing the pregnancy and got me in for a D&C. Post-D&C, he said it was a hydatidiform mole, or molar pregnancy. As I understood it, if a fetus started forming, it was taken over by a run-away forming placenta. The placenta was developing in my uterus more aggressively than normal. I was told to hold off getting pregnant for at least a year, as it could develop into cancer. I had to go in first weekly, then monthly to have my HcG (I think this is what they were checking?) levels tested and monitored. They gradually became and remained normal. Despite my trying to not get pregnant within that year, within a few months a little miracle happened, and he's my third baby. Doc and I remained hopeful that pregnancy and I would be OK, and, as it turned out, we were. Because of my history, he did a d&c immediately after childbirth, and also a tubal ligation.

All births were natural childbirth. All babies were breast-fed for one year. The pregnancies were fairly normal, I took pre-natal vitamins, and had the healthiest nails during those times! My third child was born seven years before my sarcoid diagnosis. I got colds during the pregnancies, and tried to stay away from all meds. I had a lot of nausea - lasted entire 9 mos.

After each pregnancy I had more and more bladder problems. Three yrs. after last pregnancy I had bladder surgery and "partial" hysterectomy (ovaries remained). Maybe I overdid it too soon after that surgery, I dunno, but a few yrs. later I had 2nd bladder surgery. I'm guessing it's the internal (surgical) scarring and "sling" they used 2nd time, but if I go into a serious coughing fit, and happen to be either bending over or sitting, I get painfully intense cramping - locking up - in my abdominal area. It's excruciating and lasts for several minutes - seems like forever - I almost black out and have to remind myself to do my lamaze breathing to try to get through it. It's frightening.

With what I've read through this thread, regarding the placenta and sarcoid inflammation, could there be a connection with some of the problems I had and sarcoid? Have you heard of any other sarcoid'ers having similar problems? I don't really relish telling this tale, but if there could be a connection, maybe it could help others. I guess if I had known then that I had sarcoid, and had some of this new knowledge, I would have asked for them to check more things after the childbirths and d&c's.

Wendy, best of luck to you, and I'm so sorry about what you went through with other pregnancy. I hope you'll be letting us know that your pregnancy is healthy as are you. Take really good care of yourself.

~E
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Kathleen (65.121.96.---)
Date:   02-23-03 13:30

Lisa and All -

My sister had sarcoidosis, and has been symptom free for about 10 years. She got pregnant 2 years ago, and lost it early; she then became pregnant again, and had a very good pregnancy (at age 38); she did have pregnancy induced diabetes, and some problem with occasional high blood pressure, but all in all, she was fine, and so was baby (a little underweight, but her dietition had her on a low carb diet...??...)

Anyway, her physician was aware of the past sarcoidosis and monitored her carefully; and xrayed her lungs after delivery - there was no sign of sarcoidosis.

I have always had a history of endometriosis, and have never (to my knowledge) been pregnant. I have always been irregular, and very often skip periods entirely. I have been on BC pills since I was 19 (22 years) and I feel miserable without them. I never considered this to be part of sarcoidosis - but I have noticed increased uterine pain with the Minocin - so hopefully, it will clear up entirely! (With Minocin, everything feels worse before it gets better - it seem to concentrate where problems occur, irritate them and then feel better.)

Kathy in Wyoming
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-23-03 14:50

E,

I noticed you said you had a repeat cystocele repair and thought maybe it was due to overdoing it after surgery. Sarcoidosis inflammation causes high levels of angiotension which is known to inhibit healing. This may have been the reason for your surgical failure. I had a similar surgery last summer with partial failure to heal. I've discussed this with my surgeon and he was interested to learn about sarcoidosis as a possible inhibition of the healing process.

At the time of my surgery, I was unaware I had sarcodosis but it's interesting to note that I apparently had a major Herxheimer reaction due to the prophylactic antibiotic I was given IV at the beginning of the operation. I realize now, that's the probable reason for the postop fever they attributed to a cytokine release.

Meg
 
 Re: Sarcoidosis and pregnancy, etc...
Author: kelly (---.wakefern.com)
Date:   03-11-03 14:02

Well, I am now recuperating from having a myomectomy which is surgery to remove fibroids thought to cause heavy bleeding. My Doc wanted to do a hysterectomy but I opted instead for the myomectomy. I have been diagnosed with sarc for over 2years now and have successfully weaned off predisone completely 2 weeks ago. Yeah, Me!

The pathology report from the surgery came back negative for any type of cancer, but I now wonder if they check for granulomas associated with sarcoidosis. Does anyone know if they do? and if they do not, how do I go about getting them to check for it? and bottom-line will this info be valuable to anyone studying the effects of or finding a cure for sarc?

Kelly
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-11-03 17:12

Kelly,

Yes, congratulations for weaning off of prednisone!

If it is bothering you to wonder, and since you already have a diagnosis of sarcoidosis, why not ask for a check of your pathology slides for granulomas? At least you might feel better if you ask the question now, and depending on how much trouble it will be, you can see if that is where you want to put your energy.

Maybe it would help if you gave the doc or lab a research abstract such as one of these:
Sarcoidosis in a uterine leiomyoma.

Sarcoidosis of the uterus.

Sarcoidosis of the uterus.

Kelly, do you have any results of blood tests of your vitamin D levels and ACE to tell you how active your inflammation has been lately? That would give you part of the picture.

Belinda
 
 Re: Sarcoidosis and pregnancy, etc...
Author: kelly (---.wakefern.com)
Date:   03-12-03 09:45

Thank you Belinda for your response.

I have not had my ACE and Vit D levels checked since last summer, but at that time I did give info. to Trevor and he stated that he believed my inflammation was not bad.

I am not worried about the how the sarc if affecting me, I was just curious if the knowledge would benefit others trying to gain insight into the ins and outs of this disorder. But thanks for the info.

Kelly
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Debbie (---.rasserver.net)
Date:   10-12-03 15:05

I recently found out that I have sarcoidosis. I initially had a laparoscopy because I have been trying to get pregnant for years. My gyno. sent me to a liver specialist because he didn't like the way it looked. That lead me to the lung specialist. A biopsy indicates that my sarcoidosis is calcified. He thinks it is old news and is not planning on treatment but, my concern is with the infertility and could it be related?
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Fernando (212.163.35.---)
Date:   10-13-03 10:14

My wife has sarc in the eyes. She has been suffering abnormal bleeding between regular menstrual cycles and now we have been trying to get pregnant for 8 months.

Belinda and Trevor do you know if it could be related to sarc?

We are going to the doctor in a couple of weeks and I will ask him, but I´m sure he will say there is no relation (tipical when they don´t know).

Thanks
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-13-03 11:16

Debbie and Fernando,
Sarcoid inflammation can occur anywhere in the body, so it is always possible it could be at the root of fertility problems. It is equally likely it is not.

But you need to get your 1,25-D levels checked. If this hormone is high it affects most of the other hormonal systems in the body. A high 1,25-D (above 45 pg/ml) will create widespread systemic problems.

..trevor..
 
 Re: Endometreosis and pregnancy, etc...
Author: Paulette Deane (208.157.154.---)
Date:   11-14-03 11:06


I was told that i have endometreosis in September 2003, I then went to get a Laproscapy don't i was then told that all of the tissue was removed and placed on a treatment called danol 200mg taking 2 two times a day to help this thing from coming back in October 2003 i was told by my Doctor that they have a plan and which is right after i finish taking the treatment which is for six months i am to be come pregnant is this ok to do this is the baby gonna be ok am i gonna be ok. why do i have to get pregnant?
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-14-03 14:04

Paulette,
You can read about "Danol" at this URL
http://bnf.org/bnf/bnf/current/openat/4465.htm

It doesn't sound like your problems are related to Sarcoidosis, however. This message board concentrates on medical issues for sarcoidosis patients.

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Andrea Stearns (---.247.190.25.gha.mi.chartermi.net)
Date:   04-16-04 09:58

I would like a list of normally prescribed sarcoid drugs that are considered unsafe to take during pregnancy. My daughter-in-law is 6 wks. pregnant and severely sarc.

Thanks so much.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Shanna (---.proxy.aol.com)
Date:   04-16-04 11:39

I have four children and from my experience I didnt know I had sarc, but with my first child I developed bells palsy, second child I didnt have any problems after cause I was pregnant when shewas 5 months old with ny 3rd child, after I had her, I began having shortness of breath and had to go to the ER, then finding larghe lung inflamation , refered to a pulmo and lung biopsies confirmed.. then I had my 4 th child.. I felt fine during pregnancy but after I had him, in June, I began having the worst symptoms ever... My Dr told me to expect a bad flare up of the sarc after having him... boy was he right... I have been sick ever since.. he is 9 months old now.. I just stopped breast feeding about 2 weeks ago.. I will not have any more children( four is enough) due to the bad flare ups I seem to have after delivery.,... Did I read that breast feeding can make your 1,25 levels higher? Shanna
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-16-04 11:50

Shanna,
Please breast feed your children. All the damage to your body has already been done by that point, and the kids need the natural nutrition (IMO).

1,25-D is manufactured in the placenta, primarily in the 2nd and 3rd trimesters. It is presumably produced to strengthen the immune system of the child, but it significantly overloads the immune system of mothers who are sarc or RA sufferers. I am sure it caused your Bell's Palsy, as Bell's Palsy is caused by an excessively high level of 1,25-D in the face muscles.

Andrea,
Just about every pharmaceutical drug is contra-indicated (forbidden) during pregnancy. Unfortunately the FDA has taken the position that the health of the baby is paramount, and any ongoing health problems of the mother are not factored into their safety decisions. Sometimes, individual physicians will continue to prescribe drugs that the mother needs, but usually nothing beyond drugs regarded as 'life-saving', and then only in an emergency setting.

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Shanna (---.proxy.aol.com)
Date:   04-16-04 17:02

Trevor, I breastfed all my babys until I had to get on a medicines to help with my sarc and BP meds. I nursed my last chiold actually until about 2 weeks ago.. had to stop to start the benicar.. I agree Breastfeeding is the best thing for you and your baby.. Me knowing I had to nurse him so he would servive kept me going during rough times.... Shanna
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-16-04 18:20

Hi Andrea,

Welcome to SarcInfo. Congratulations on your expected grandchild. I'm sorry to hear that your daugher-in-law is so ill. I hope she will join us here. The normally prescribed sarcoidosis drugs, which don't work, are all contraindicated in pregnancy.

Most women have said that their sarcoidosis symptoms improve with pregnancy. The placenta produces large amounts of 1,25-D. This is the hormone that is produced by the sarcoidosis inflammation and causes so many uncomfortable symptoms. According to Dr. Marshall, the high value of 1,25-D of pregnancy both allows the bacteria to enter into the macrophages and also inhibits them from being killed by the immune system. This is similar to the experience of some sarcoidosis patients who report that they love sunlight. Their body becomes 'intoxicated' with and addicted to Vitamin D or sunlight as it strives to maintain a balance with all the other hormones. After delivery the 'high' disappears as the 1,25-D falls and the bacteria which have been allowed to multiply cause more inflammation.

There isn't much she can do now to put her sarcoidosis into remission because the Marshall Protocol requires the use of medications that would be considered contraindicated in pregnancy. She can ask her doctor to measure her level of 25-D. This is the precursor to the active metabolite 1,25-D. Part of our protocol is to lower 25-D so that the inflammatory tissue has less 'fuel' to manufacture 1,25-D. It is probably not wise to try to get that level way down while she is pregnant but if she knows the level, if it is quite high, she can reduce her exposure to Vitamin D while continuing to monitor the 25-D so that is stays in the normal range. This may help prevent more sarcoidosis inflammation.

Many women report an exacerbation of their sarcoidosis symptoms following the birth of their baby. This may be because the high 1,25-D has allowed the bacteria to mulitiply. Your DIL should be expecting this. Sarcoidosis doesn't go away without treatment. If she is feeling okay, she may want to breastfeed and delay treatment. But if she is feeling quite ill or wants to start to put her sarcoidosis into remission as soon as possible, she will need to bottlefeed or wean so she can take the necessary medications of the Marshall Protocol.

I hope pregnancy provides her with a respite from her sarcoidosis symptoms and that everything goes well. Please let us know how both are doing.

Best wishes,

Meg
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Julie (---.cwisp.net)
Date:   05-13-04 13:27

I was diagnosed approx 4 weeks ago with sarcoid of my lungs. It took a year and 24 doctors to finally gain a diagnoses. All of this is new to my husband and I . In Sept we will be married 2 years and of course having children is on our "to-do" list. I was told I went into remission shortly before my thoracotomy on 4-18-04. My body has taken alot of abuse over the last year with 10 mos of prednisone therapy and Sporanox (antifungal med for a misdiagnosed diasease) So it will take time to whip this body of mine into shape. I have read several posts and I am finding similar symptoms that for a year doctors made me feel I was nuts. It is starting to make sense. FINALLY! Anyhoo, is the key to a healthy pregnancy to constantly check Vit D and ACE? If so are we talking monthly, weekly? I am a paramedic and my mom is a retired nurse of 40 years and we have been constantly researching but this remission thing I dont completely understand. I planted flowers in the sun over the weekend. got a little sun burn. The next thing I know I feel awful and my breathing got so much worse. The doctors sent me home with an answer but didnt give any patient education. We didnt know anything. Thank you all for sharing your experiences. Julz
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-13-04 15:37

Julie,
ACE is meaningless when folks are on steroid therapy, and pretty meaningless the rest of the time. It is an intermediate metabolite, and not really probative.

During pregnancy your 1,25-D level will soar, as 1,25-D is being made in your placenta, kidneys and your sarc inflammation. Post-partum is when the sarcoid relapse usually comes. Make sure you check your 1,25-dihydroxyvitamin-D and 25-hydroxyvitamin D levels so you have some chance of getting through that relapse.

As for remission, it doesn't happen.
Biopsy-verified Sarcoidosis never goes away on its own. The idea that it does is a fairy tale. Study after study has shown that fairy-tale to be false, yet pulmonologists still cling to the dogma.

Unfortunately the ARBs which will give you most relief are mutagenic during pregnancy. You cannot get onto a decent therapy until after the child is weaned. So I would focus right now on a successful pregnancy and minimizing your post-partum relapse. Beyond that you can plan to spend a couple of years getting rid of the bacteria which cause this disease.

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sharon (63.82.135.---)
Date:   05-25-04 09:03

I was diagnosed with Sarcoidosis of the lungs recently and am in Stage 2 w/diminished lung capacity. I believe I may have just gotten pregnant, not planning it, relationship with my husband just hit a very romantic moment and we weren't careful. I have severe stiffness in the knees and wrists and have been swollen for abt 2 wks. Suppose to start Methotraxate in a month since I'm getting worse. Breathing has been really difficult, can't do much walking anymore and chores are very tiresome. I'm not one to terminate a pregnancy but if it proves to be positive in the next few days will my pulmonologist recommend termination. I already have 3 lovely children growing and the doctor said I wasn't fit to exercise until after I got some treatment and that w/o treatment I may get worse. I look forward to hearing from you. Thank you.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.188.240.36.euc.wi.charter.com)
Date:   05-25-04 19:58

Sharon,

Welcome to SarcInfo. You may be in a very difficult situation. Many women with sarcoidosis report that they felt better during pregnancy. Most report a major relapse following delivery. Benicar, a key component of the Marshall Protocol, the only effective treatment for sarcoidosis, is contraindicated during pregnancy. I would think that Methotrexate would be too. Please let us know what your pregnancy test reveals and what your pulmonologist advises.

In the meantime, educate yourself about the etiology and treatment of sarcoidosis by reading SarcInfo. You will need to treat with the MP as soon as you can because sarcoidosis does not go away on its own.

Meg
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-07-04 23:22

A new report about the mother's immune system response during pregnancy may help explain why women with sarcoidosis report feeling better when they are pregnant. Sarcoidosis involves a Th1-activated immune system. This report explains that the NF-kappaB/IkappaB signaling pathway is down-regulated in T cells in pregnancy, shifting the immune system away from Th1 and toward a Th2 immune response.

There are other factors to consider, especially vitamin D and sunlight exposure. We know that these play a role in activation of NF-kappaB and the Th1 immune response. We also know that in the final trimester, the placenta produces 1,25-D.

Belinda
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Diana (---.cache.pol.co.uk)
Date:   06-08-04 09:56

I seem to remember reading somewhere that the body also produces extra corticosteroids during pregancy. They would presumably also help one feel better.

I don't remember having a relapse after the birth of my first child, 14 years ago, although I felt surprisingly well beforehand. After the twins, 10 years ago, I felt brilliant during pregnancy but terrible for about 6 weeks afterwards. I suppose having 2 placentas would be worse than one. Then I picked up again.

Diana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Karen (---.server.ntli.net)
Date:   10-07-04 06:54

Any info on whether Sarcoidosis can cause a Dermoid cyst to grow on the ovary?
I had to have an emergency hysterectomy because mine had twisted.
The gynaecologist said a complete hysterectomy was needed due to it being such a mess in there, but the Sarcoidosis was never mentioned!

Karen.

PS> I had also previously had 2 miscarriages (years before).
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   10-07-04 19:07

Karen,

I'm very sorry that you had to have a hysterectomy under an emergency situation. A hysterectomy can difficult to deal with even if it is an elective procedure.

This web site contains some information about Dermoid cysts.
Dermoid cyst of the ovary And, this is the first paragraph...
"Dermoid cyst of the ovary: A bizarre tumor, usually benign, in the ovary that typically contains a diversity of tissues including hair, teeth, bone, thyroid, etc."

Here's another site with information on ovarian cysts,

Since Sarcoidosis is caused by bacteria, I don't believe that Sarcoidosis has anything to do with the occurence of a Dermoid cyst. They are generally considered to be congenital, and often show up in young children, in different places on the body.

If you have any other questions about it, please ask.

Lottie
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sonya (---.bos.east.verizon.net)
Date:   10-13-04 17:10

Hi,

Boy am I glad I came across this website! I am in my 32nd week and was just told by my OB (she is the fourth doctor I've been to since my pregnancy, I chose to stick with her, because she actually heard of and had experienced a patient back in her residency who had sarc. - The others were blank stares, the first was a perinatologist who basically treated me like I was a waste of her time.... She also read to me what sarc was and how it could progress during pregnancy - She recited the same stuff I had found on the internet - needless to say, my husband and I were not impressed and began our fustrated search for an OB that had a pulse). Anyway, I had brought to her attention (because I had just learned) that the prenatal vitamins that I had been taking since my 6th week had a warning label on it specifically for sarcoid patients to consult the OB. Sometime ago, a radiologist had mentioned that I should stay away from vit D if I could help it. My OB immediately took me off of the prenatal and started me on a vitamin B complex with folic acid. She researched other multivitamins that did not contain vit D and there were any on the market. So now, I have to be extremely careful with my nutrition to get the vitamins that I need during pregnancy. I have had my ACE levels checked, but not my vit. D metabolites. I will request that these levels are checked and will inform my OB (which I am confidant that she is willing to learn more about this) of the over production of 1,25 D.

As for the pregnancy, the first and second trimesters were very trying. I was taken out of work due to the severe fatigue and sleepiness ( I had driven off the road, fallen asleep behind the wheel of the car, while talking on the phone, etc...) along with the other symptoms that is common in Sarc.
The baby was growing right on target with the gestational age, until I hit my 28/29th week. I had shown a rapid weight gain within a 4 wk period and the ultrasound at 31wks, showed that the baby was measuring at the size of 34wks, so I was told to expect a 9lbs baby or more! Now that I know how the placenta is affected with sarc, I will definately discuss it with the OB. So far the baby is perfect (my mom warns that our family makes big babies, I was about 9lbs and brother was close to 13) and I don't have Gest. Diab. or high blood pressure, etc.... I keeping my fingers crossed all the way! But I do know that I am feeling all of the effects of sarc, it waxes and wanes, and with the baby coming, my perspective on my health is such that I have to get well to be there for my family.

I also have Fibromyalgia, which came first - well it is very much like the chicken/egg story. As a kid, I always felt that "my lungs are too small for my body" I've been diagnosed with Sarc when I was 32 (2 years ago) I haven't been treated with any steriods, only NSAIDS which I had to stop because it increased my breating problems. I was also diagnosed with PCOS - Polycystic Ovarian Syndrome - which is caused mainly by hyperinsulin production, common sense would dictate that if sarc is known to screw up the pancreas, would that mean that the insulin production would have problems and in turn have problems with glucose (I had hypoglycemia as a teen) I have always had problems with menstruation. Also, I was placed on Glucophage (Metformin) in order to regulate my hormonal system in order to ovulate properly, and to try to lose weight (PCOS causes a nasty cycle of weight gain/loss due to hormones) I watched my carb intake, and low and behold we got pregnant, almost immediately, within 3-5 months of casually trying.

I am still looking for that doctor or team of doctors who have an interest and dedication for patients who have sarc. Over the years, I have learned to be much more assertive and not take what the doctors are saying as gospel - because they are humans and I of course have learned to remind myself of that. I've given up being fustrated and I am now focused on seeking out an advocate/MD that can help me function for our new family.

Good luck to all of you, I know it can be very difficult, but with the right support from family, friends, doctors, and being informed living a normal life is in within reach.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-14-04 07:55

Sonya,

Thanks for sharing your story, and welcome to SarcInfo. I'm glad you found this website, and have already begun applying the information here. The fact that sarcoid patients abnormally produce excessive amounts of 1,25-D has been known for over 20 years, but wasn't well publicized until Dr. Marshall began educating physicians and patients.

My sarcoid went undiagnosed until I was in my 40's, but I can tell you from my own experiences that it affected pregnancy. My main problem (in pregnancy) was fatigue (falling asleep, having to take daily naps) and when I complained about fatigue to my physician, she naturally thought I was speaking about the fatigue accompanying a *normal* pregnancy. With symptoms that are non-specific and "benign," it and be difficult to get medical profession to seriously consider them. On the other hand, my skin lesions improved during pregnancy.

After delivery, all my symptoms flared: fatigue, skin lesions, swollen joints, feeling cold all the time, constipation. Dr. Marshall has explained that a flare of symptoms after delivery is due to the elevated 1,25-D, since the placenta itself produces 1,25-D.

I hope you will continue reading on this site, so you can be proactive about tackling this disease (once and for all) after your baby is born.

Wishing you health,
Belinda
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sonya (---.bos.east.verizon.net)
Date:   10-14-04 13:06

Hi Belinda,

Thank you so much for your reply. I had spent all this day on the phone with my doctors and I reached out to a "sarc specialist" located in Boston, MA. He took my call right away - especially after I had told his assistants that I was pregnant and was taken off of my prenatal vitamins. He was very helpful and empathetic and advised me to get the vit. D tests through my OB and to make an appointment with him as soon as I can. If my levels of Vit. D and calcium are within normal range and my sarc is not active, he believes that taking the prenatal vitamin would be ok because the fetus depends on that. Either way, I would have to be monitored regularly.

As for flare ups after pregnancy, he said that he doesn't see many sarc patients who were pregnant, however flare ups do occur in some cases. Even if they do occur, it shouldn't be too difficult to monitor and treat if necessary.

Thanks again!
Sonya
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Heather (---.proxy.aol.com)
Date:   10-23-04 20:07

I was dx with sarcoidosis in June 2002 , Im 38 weeks pregnant and I've been having sob, night sweats and low grade fevers I'm woried that my sarcoidosis will flare up again. My obgyn didn't seem to concerned I don't think he's had to many sarc. Patients.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   10-24-04 11:39

Heather,

Welcome to SarcInfo. As the reports in this thread about sarcoidosis and pregnancy state, studies show that most (not all) women feel better during pregancy but then relapse after delivery. The symptoms you report indicate that your sarcoidosis inflammation is significant. And the high levels of 1,25-D produced by the placenta may be exacerbating your symptoms.

Sarcoidosis does not go away on its own. And the standard treatments are ineffective and toxic. While you're waiting for the birth of your baby, I hope you will have time to read the info on this website and www.marshallprotocol.com. You can avoid all forms of Vitamin D, including sunlight to see if it makes you feel better. But you cannot start on the MP medications until after delivery and if you are not nursing your baby.

The Marshall Protocol is the only route to remission from sarcoidosis. Many doctors discount its seriousness but this disease reduces the quality of life for years and then kills. We're eager to help you and your doctor understand how you can get well.

Best,

Meg
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sonya (---.bos.east.verizon.net)
Date:   11-03-04 10:11

I just received my blood work for my vit D metabolites and guess what...???

My vit D 25 is 50 (normal range of 20-100 and my vit D 1,25 is 170 (normal range of 15-60) according to Quest Diagnostics. My Rhuematologist was very surprised! - I wasn't. Since being off of the prenatals, I have felt a significant improvement in my symptoms, don't get me wrong, I still have symptoms, but during the course of taking the supplements-I was in agony.
I'm in my 35th week. When they took the test, I had been off of my supplements for about a week or so. Can you imagine what the number would have looked like if they had drawn it prior to taking me off?

I am concerned about the long term effects it may have on my baby and about the breastfeeding. I am encouraged when I read that everyone had normal babies.

As for the OB/GYN who doesn't seem concerned about the sarc and pregnancy, give them some of the info on this website and if you still don't think that they are taking an interest, or answering your questions without looking into it first - you'll know what I mean - just ask for a referral for another doctor - specifically a perinatologist. I am considered high risk due to the "unknown" and to be on the safe side. I was also told my my OB to go to a pediatrician, rather than a family practitioner, because of the sarc. She'd feel much better if she new that the baby is with a specialist and can monitor her throughout her development.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-03-04 20:49

Sonya,

I'm so glad that you are feeling better despite your amazingly high 1,25-D. You provided a wonderful service by educating your rheumatologist and I'll bet you will be educating other doctors too. That is a very high lab range for 25-D!

I am not aware of any statistics about the normal levels of 25-D and 1,25-D during pregnancy. We know that the placenta normally produces 1,25-D during pregnancy and most sarcoidosis mothers do have healthy babies.

Your 1,25-D will come down after delivery. If that reduction allows your immune system to function better, you may experience an increase in symptoms due to the Herx reaction.

You cannot take Benicar and breastfeed so you will have to decide if you want to postpone treating your sarcoidosis in order to nurse your baby. These bacteria multiply very slowly so you could base you decision on how well you feel.

I would encourage you to continue your effects to avoid Vitamin D and to dilegently avoid sunlights/bright lights.

We will be anxious to hear all about the birth of your beautiful baby.

Best,

Meg
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sonya (---.bos.east.verizon.net)
Date:   11-08-04 09:13

Hi Meg,

Thank you so much for your reply. Sometimes I do feel as if I do know more about my condition than the doctors, and I ask myself, why aren't they looking this information up? I know that they are busy, and I am only one person, actually two and then add into the mix my family who is counting on me... There's a lot of information out there that I thought a doctor would have the resources for. Its kind of funny when my Pulmonologist was looking through the print outs from this website. He was nice enough and almost began dismissing the information as an "internet" information site that did not have a significant scientific basis, until he saw that it was an article from Chest Journal, which all of a sudden became a reputable source.

I will keep in touch as the count down nears its end! Yahoo!!!! I can't wait!

P.S. I've also sent this info to a friend who has been dx w/ Fibro, but has the same symptoms as I do. I gave her the info from this site to bring to her many doctors. She will also be checking in on her Vit. D levels, as she has hypercalcemia and is taking magnesium to counter balance her blood levels.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Monika Polska (217.153.22.---)
Date:   11-30-04 04:48

Hello there,
I have one question...
Is sarcoidosis the indication for ceasarian (form of giving bith - not natural method).

Thank you for your answer,
Monika Polska
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Diana (---.cache.pol.co.uk)
Date:   12-01-04 12:58

Monika,

I do not know if experts would recommend a caesarian, but I have had children both ways. My daughter was born 14 years ago naturally. My twins needed a caesarian because they presented one transverse and the other breech, and couldn't get out the usual way!

I don't remember the natural birth causing any sort of flare. I was given pethadine and at that stage it was OK. I had no lung symptoms back then. I next came across pethadine when I had a pneumathorax after a muffed bronchoscopy a couple of years ago, and either that or some other drug they gave me was BAD NEWS and they wouldn't give me any more drugs because whatever-it-was made me unable to control my tongue with consequent potential to block my airway.

I felt rough for about 6 weeks after the caesarian. It may have been the two placentas causing extra high 1.25D that was the trouble. The problem with caesarians is that they are quite major operations, and if one is coping with sarc or other problems in addition to a hole in one's tummy it probably takes longer than normal to get over it.

Diana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-01-04 14:30

Monika,

This is one of the most recently published articles on pregnancy and sarcoidosis. It says,
"If well managed, pregnancy in women with sarcoidosis is usually carried to term with no problem, excepting rare contraindications. There is no specific risk for the embryo-fetus. Fertility is unchanged. Pregnancy can be contraindicated in case of respiratory failure due to heart failure or central nervous system disorders. A vital capacity less than 100 ml or pulmonary hypertension contraindicate pregnancy. Pregnancy should be discouraged during a period of active disease progression., but pregnancy in itself does not aggravate sarcoidosis. A flare up 3 to 6 months after delivery is not unusual."

Considering that sarcoidosis inflammation is known to have an affinity for scar tissue, a regular delivery would seem preferable, if possible.

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: Sarcoidosis and pregnancy, etc...
Author: Diana (---.cache.pol.co.uk)
Date:   12-02-04 11:24

Monika,

Further to my email of 12-01-04 12:58, I was not allowed an epidural because my neurologist didn't want anyone mucking about with my spinal cord. The caesarian had to be done under general anaesthetic.

Diana
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Dori (---.canadair.ca)
Date:   12-03-04 12:05

In early 2003 I was diagnosed with Sarcoidosis 5 months after having my daughter. My symptoms were mainly swollen joint and pain in my ankles and knees (but mostly my ankles) and extreme fatigue. I did not experience any difficulty breathing or any skin lesion. The doctor did not tell me much about sarcoidosis and said that it would go away on its own. It did, 6 months later. The pain in my ankles stopped 3 months after it began but the inflammation in my lungs disappeared 6 months after. I am shock to read the link with pregnancy and vitamin D, I was never told anything about this. You're also saying that it doesn't go away on its own, it's been almost 2 years and so far the symptoms of Sarcoidosis have never come back. When I started having the pain, I was terrified because my mother had severe rheumatoid arthritis for 30 years (it started after a pregnancy) and I thought I had the same thing. Is there any link between sarcoidosis and arthritis? I know they are both auto-immune disease. I'm thinking about having a second child but I'm afraid a second pregnancy can trigger another disease (like rheumatoid arthritis) or the sarcoidosis might come back. I never took any medication for it and last week I had a chest X-ray because I had the flu and the radiologist said my lungs were fine. Everytime I mention this disease, no one knows what it is. When I went to the doctor last week for my flu, I told him I had sarcoidosis and he said in 20 years, I'm the first patient he meets who had the disease!! He asked me "how did you get that??" Do you know people who had sarcoidosis and then developed arthritis or lupus or another auto-immune disease?? I had never been sick before and I thought this had been triggered by my pregnancy but the doctor didn't seem to see any link?? Do you also know people who had sarcoidosis and never had it again after (even during or after a pregnancy)?? Sorry for all the questions but I was told so little about this disease by my doctors.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-03-04 17:34

Hi Dori,

Welcome to SarcInfo. I'd like to email you some information about our website. Please re-register and include your email address. It will be visible to the moderators only.

It you read the NIH brochure that is at the top of this page, you'll see that the largest study ever undertaken of sarcoidosis patients indicated that sarcoidosis doesn't go away. Sometimes symptoms are unrecognised or mislabeled as something else such as arthritis, chronic fatigue syndrome or fibromyalgia. Sometimes symptoms are latent or subclinical and will return at a later date. The Th1 inflammatory diseases like RA, lupus and sarcoidosis tend to run in families as your history demonstrates.

The simplest way to determine if your sarcoidosis is really gone is to do the D-metabolites blood tests. This is will suggest the level of your systemic inflammation and indicate if you should start treatement with the Marshall Protocol. I recommend that you do this before you get pregnant because the MP medications are contraindicated during pregnancy. There is a strong possibility that a pregnancy will exacerbate your sarcoidosis because the placenta produces 1,25-D so it would be wise to take care of your health first.

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: Sarcoidosis and pregnancy, etc...
Author: Dori (---.canadair.ca)
Date:   12-16-04 12:07

Hi Meg,

Here is my e-mail address. Do you have names of doctors in Montreal? As I've been reading about other people talking about their symptoms on this site, I don't feel I had a third of the symptoms. As I've mentioned before, my symptoms were mainly severe pain in my ankles (swollen) and fatigue but I've never felt any chest pain, difficulty breathing, cough, night sweat, fever, etc. The chext x-ray confirmed the sarcoidosis. I will try to have my D-metabolites checked but I don't have a family doctor. Does the disease totally go away once you've been though the protocol or do you need to stay on it for a long time? When you talk about Th1, is it the same gene responsible for RA. If it is, is the MP also recommended for people with RA?

Thanks.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-16-04 19:17

Hi Dori,

I'll send you the list of Canadian doctors. You can also check out marshallprotocol.com where people list their geographical area and you can send them a private message to ask about their doctor.

It's not really possible to compare degree of illness by types or severity of symptoms. The D metabolites give a better 'picture' of systemic inflammation. Th1 refers to the T-helper cells immune system response to bacteria. A Th2 response is a reaction to allergens and viruses generally. The level of 1,25-D goes up in Th1 inflammatory diseases, including sarcoidosis and RA. Theoretically, all Th1 inflammatory diseases should respond to the Marshall Protocol. Yes, sarcoidosis should be a thing of the past once you have been through the MP but it does take a couple years.

You will find RA stories in this thread, Ask Rheumatoid Arthritis Questions Here. And at MP.com.

Best,

Meg

P.S. Your email address did not work.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Dori (---.canadair.ca)
Date:   12-17-04 06:34

Hi Meg,

Sorry, here is my good e-mail address.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Fernando (83.165.19.---)
Date:   12-18-04 08:48

My wife has sarc in her eyes. We have had a beautiful girl last week. The doctor told us that she felt better during pregnancy because Progesterone, a hormone produce in pregnancy, is a powerfull antiinflamatory agent. But the body stops producing it after delivery, and can cause a relapse of the symtoms.

He recomended surgery to bring the girl out because the body doesn`t stop production inmediatly.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Admin (---.ventca.adelphia.net)
Date:   12-18-04 09:51

Fernando,
While I want to congratulate you and your wife and your beautiful new daughter, I have to say that your Doctor is dead wrong in implicating progesterone. The real culprit is the secosteroid hormone 1,25-dihydroxyvitamin-D, which is manufactured in the placenta during pregnancy. It makes your wife feel better during the pregnancy because its higher level in the body shuts down the killing of the bacteria causing the sarcoid inflammation. Patients frequently relapse post-partum, however, as the levels drop again.

Please read the tutorials here so that you can understand this disease a little more fully. It is important for your wife's future health that she understands that Sarcoidosis is a systemic disease, and it will be throughout her body, and not just in her eyes. You will also want to keep a close eye on your daughter's ongoing health. Children of mothers with sarcoidosis are more susceptible to developing the Th1 diseases themsleves.

..Trevor..
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-18-04 09:55

Hi Fernando,

Welcome to SarcInfo. Congratulations on your new baby girl. I hope you will investigate the Marshall Protocol and begin treatment as soon as the baby is weaned.

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
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Sonya (---.bos.east.verizon.net)
Date:   02-10-06 23:20

Hi Everyone,

I am back and its been about 13 months since the birth of my baby girl. Lets just say, I was a mess during the delivery. What was odd was that I didn't FEEL the pains. Let me first begin chronologically, She was 11 days late, I had to be induced and was started at 8am on Friday, Heavy labor 1:30am Saturday and then C-sectioned at 4am Saturday. My hormones were up and down, I was lost! Hated being on the drugs! Especially around a newborn. It took a very long time for me to recover. My D levels were checked about 2 months post and I was found to be VitD (25) deficient. The Vit D (1,25) was in the "normal" range - but the ratio between the two still indicated some inflammation going on somewhere. I was so determined to get this taken care of with treatment that I went and sought out a Sarc specialist. I wanted to get onto the Marshall Protocol, but I was told that possibly a short course of prednisone, some paxil, and try to deal with the pain. Because my case is so common and relatively mild (treatment doesn't really to be given for Pulmonary) and that I am left with Fibromyalgia like symptoms to deal with, it would be more of a life style management that would help me feel better.

I did ask about the Marshall Protocol and he said that he was familiar with it, but has not made a decision if they wanted to endorse it yet. He left it up to me to make the argument for giving me the treatment. This was a year ago this month. I haven't been back since. I am feeling better, but I am still out of work. Flares still come and I have to manage my lifestyle with my gorgeous baby. So life goes on. (P.S. Sorry I tend to ramble when I feel patronized by a "specialist")
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   02-11-06 04:19

Sonya,

Congratulations on your gorgeous baby. I’m sorry that you didn’t move forward with the MP at the time.

I’m glad that you didn’t go with his idea of treatment for Sarcoidosis though.

There is information here in this thread on SARCOIDOSIS about the standard treatments for Sarcoidosis.

And there is more information here with SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

The “deficient” 25D you had, was probably an indication that the 25D is being rapidly converted to 1,25D. And, what is considered within the normal range for the 1,25D could also be an indicator of Th1 inflammation. We would need the numbers to give you an accurate evaluation though.

I hope this means that you are reading more about the MP again, and that you are planning to find a doctor who will help you with it. Remember that Sarcoidosis is a systemic disease, and usually does involve more than one area of the body. It is rare that it only affects the lungs. You didn’t mention where your pain is, but, for instance, if there is pain in your joints or muscles, that would indicate that you have involvement in other areas.

Lottie

PS… When you have a chance, please add a signature line to your profile. It helps the moderators to answer you questions more completely.

*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: Sarcoidosis and pregnancy, etc...
Author: Anna (---.server.ntli.net)
Date:   02-22-06 10:50

I was wondering if sarcoid can cause hair loss? It is 3 months since my son was born in November and I know that one loses hair in the postpartum period. However, I am sure that with my other children I didn't lose this much! In some places my hair is so thin it looks almost as though I am developing bald patches. I am scared to wash my hair in case more comes out - and at the minute it seems to be coming out in chunks. I am still taking 10mg prednisolone a day, which I am really hoping my doc will allow me to reduce next week as my last calcium reading was 2.38mmol (this seemingly huge drop incidentally down from 2.55 10 days previously was since I started avoiding dietry vit d and bright lights).

Just slightly off the topic now was that I had the results of my repeat MRI on Monday and apparently there was now no noticeable thickening of the menginges and basal cisterns (as there was in December) but the thickening of the pituitary stalk remains. My doc said that when the prednisolone is reduced the meningitis may come back - is this true? I did ask about being able to talk to him about the Marshall Protocol but as he wasn't my regular neurologist he said that he couldn't talk to me about it but 'was sceptical of any website claiming to offer cures for diseases'!!!! I am hoping I will get to see the other doctor soon anyway.

Thanks in advance.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   02-22-06 23:22

Anna,

One of the things I noticed a few months before my Sarcoidosis diagnosis, was that my hair was falling out. Not in chunks, but I lost large amounts of hair each day. I was pulling the hair out of my brush at least every other day, because it was so full of hair, it wouldn’t brush anymore. When I was on Prednisone, it grew back, and then started coming out a bit faster than “usual” about the same time that my cardiac symptoms returned, while I was still on the Prednisone. It fell out again, when I weaned off of the Prednisone, and it is now growing back again!

Sarcoidosis affects the skin and, of course, the hair follicles. If you do a Google search for Sarcoidosis, and hair loss, you will get many sites with references to it. The good news, is that the MP will get rid of the bacteria causing the hair loss as well!

Your doctor is correct about the possibility of the meningitis returning as you wean off of Prednisilone. The Prednisilone is reducing the inflammation for now, but it is also preventing your immune system from working. And, since it is Cell Wall Deficient bacteria that is causing the inflammation, and they aren’t being stopped, the inflammation will probably return. The inflammation could return even if you don’t stop the Prednisilone, as it did with my heart inflammation, because the CWD bacteria are continuing to thrive.

The ARB, Benicar can help protect your body from the inflammation that the bacteria cause, while at the same time helping your immune system to find and kill the bacteria. We recommend that people who are weaning off of steroids take Benicar 40mg every six hours while they are weaning off of them, to help keep the inflammation down.

WEANING FROM STEROIDS

I’m not surprise that the doctor was skeptical. Keep reading, and learning, so you’ll be ready to respond to your regular doctor. And, keep avoiding vitamin D, sunlight, and bright lights! That can help keep the inflammation down.

Let us know if you have any other questions about implementing the MP.

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: Sarcoidosis and pregnancy, etc...
Author: Anna (---.server.ntli.net)
Date:   02-23-06 00:34

Thanks Lottie,

It really does help when people can relate, and indeed have had, the same symptoms, it makes me feel less like 'this is only happening to me'.

I was reading the stange sensations thread and I can so relate to the people who experience odd sensations in their faces - they are identical to the ones that I have - tightening, tingling, numbness, periodic swelling of the eyelids. Although, my doctor told me that this was probably down to the prednisolone as the facial symptoms started at the same time and I started taking the steroids. Indeed I really didn't feel ill at all (apart from tummy pain and blood in my urine) until I started taking the steroids. I've been on them for 5 months now.

The thought of getting worse really does scare me but I so want to get well again. I sometimes think that I am being led into a false sense of security because on some days I feel perfectly well and think that the docs have made a mistake and their is nothing wrong with me, then on other days, I feel really tired, get the strange facial sensations, my heart starts fluttering etc and I realise that, no, there hasn't been a mistake.

How often would you get your D levels tested? The last time mine were done was at the end of November/beg December after my son was born. Would it be reasonable to request they be done again?

Sorry to ramble on, I still have so many questions and uncertainties about this illness.

Regards

Anna

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   02-23-06 03:52

Anna,

I can certainly understand your feelings. It’s a scary disease! My doctor and I have often spoken about the fact that if you name just about ANY symptom, and it can be a symptom of Sarcoidosis. And, of course, most doctors know very little about it at all, many still thinking that it’s “just a lung disease.” Hah!

Unfortunately, most of what they “think” they know isn’t even right. Many of them are still dealing with the idea that the cause of Sarcoidosis is unknown, and can’t let go of that for whatever reason. Prednisone brings such dramatic changes… sometimes good at first… and they can’t(?) understand why it doesn’t keep working.

It’s simple. Sarcoidosis is a chronic infection caused by CWD bacteria. And steroids shouldn’t be given to a person with an infection, because the immune system is shut down by them, and then can’t respond to the infection at all.

Because your D metabolites have bounced around so much with your pregnancy, and medications… you may feel better having them done again in a week or two to see what’s happening now. My doctor runs them about every four months. And, did just before I started a new antibiotic combination recently, as sort of another “baseline” for his own information in tracking what is happening with each combination of antibiotics.

Generally the information about the D tests is here…
How often should I test D levels? What are the target numbers?

Let us know if you have any additional questions about implementing the MP. Try not to worry.

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: Sarcoidosis and pregnancy, etc...
Author: Anna (---.server.ntli.net)
Date:   02-23-06 11:15

Hi Lottie

Yes, I do try not to worry, sometimes I have good days, sometimes bad - it fluctuates really - depends on how many times I have been up through the night feeding too!!

I'm seeing my doctor re: my calcium levels (which are hopefully still normal - I'm having another blood test tomorrow) so will ask for the D tests to be done again if poss.

One last note, like many others, I think I've had this for many years - symptoms have come and gone but my pregnancies have always been particularly difficult, especially my daughter 7 years ago. But even when I had my son in 1989 I had polydipsia which no-one investigated. Oh well, at least I have found this wonderful site and am slowly enlightening myself.

Thanks to all once again.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Anna (---.server.ntli.net)
Date:   05-16-06 06:04

Hi

I have been doing some more reading through the site and noticed a post in which Trevor gave a link to to an article in which some peoples (pregnant) 1,25D rose as high as 330 mmol during pregnancy so I was just wondering what the D ratio could realistically expected to be during pregnancy in a person without sarcoidosis?

Thanks.

Anna.

Anna, UK. Provisional dx of neurosarcoid. Initial 1,25D 309 pmol/l, now 83 pmol/l - 25D 110nmol/l, now 118 nmol/l. Have nephrocalcinosis. 2.5mg prednisolone, Ramipril 5mg. No dietry D, NoIR's and avoiding light.
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   05-16-06 22:40

Anna,

I’m sorry, I don’t have that information. It’s very likely that healthy, pregnant people wouldn’t have their D metabolites tested, and that the results would be closer to the normal range.

I hope that you are learning more about the MP to help you convince a doctor to help you with the MP. Let us know if you have any questions about implementing the MP.

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: Sarcoidosis and pregnancy, etc...
Author: Jessica Ellis (204.209.209.---)
Date:   09-05-06 12:39

I haven't started the MP yet and I plan to but I am pregnant so I am waiting until after the baby is born. I am wondering if Sarcoidosis has any negative effects on pregnancy and if having sarc can cause any risks to my baby.

Thanks

Jessica Ellis: No Diagnosis yet/Symptoms for 7 years + cough,weakness,fatigue,(vision,skin,nasal,hormonal,swallowing problems) joint,bone and muscle pain
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   09-06-06 04:11

Jessica,

Congratulations! When is your baby due to arrive?

Please read the other posts in this same thread, especially the one on 02-07-03 at 08:12 by “Belinda”, and to “Lisa.”

Can a pregnant woman be on the Marshall Protocol?

Am I contagious?

Will re-infection occur if my partner or family members are not treated?

You may want to consider following the non-medical portion of the MP. Avoiding supplements and sunlight, and bright lights while you are pregnant.

Let us know if we can be of any help.

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: Sarcoidosis and pregnancy, etc...
Author: Margaret (38.219.120.---)
Date:   01-11-07 13:01

Hi,

I have uterine fibroids. From what I have read here it could be due to my sarcoidosis. They are getting very large now. I am at the stage where some kind of surgery is becoming necessary. I am scheduled for an ultrasound at the end of this month.

My question is this. If I can put off any kind of surgery and go on the Marshall Protocol. Will my fibroids shrink in size? I would put it off as long as I could. I am having some trouble with their size interfering with my bladder and colon.

Thank you very much.

Dx-Skin Sarcoid 1999 and 2001, 12/06 25D - 11.7, 1,25D – 49, Noir glasses ordered, waiting for Ins. Co. to approve Benicar dosage
 
 Re: Sarcoidosis and pregnancy, etc...
Author: Lottie (---.proxy.aol.com)
Date:   01-12-07 03:56

Margaret,

It is very possible that your fibroids could be due to Sarcoidosis. If so, they should shrink with the MP, although there is no way of knowing how long it would take. And, it is also possible that they could become enlarged due to the inflammation that will occur during the immunopathology (formerly referred to as “herx”) which happens as the Cell Wall Deficient (CWD) bacteria die off.

I hope that you will join us at www.MarshallProtocol.com where we are continuing our Phase II study of the MP. We are now 3515 members strong so you will find enormous support for recovery there from the moderators and other MP members. This is where we have our extensive 'library' of information about Sarcoidosis and explanations of the MP treatment protocol.

The SarcInfo moderators also moderate the new study site and we'll be looking for you there.

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
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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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