Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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 The material here provides useful background, but much of it is now out-of-date.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

Author: ron (---.server.ntl.com)
Date: 05-29-02 06:38

i was diagnosed with kidney failure last year and the hospital say it is Sarcoidosis. i am on Predisnolone. Initially i was taking 40 mg a day. i visit the hospital every 4 weeks and they either increase the Pred or decrease it. several weeks ago i was dropped to 1mg/day and a month later the doctor was really impressed with the recovery of the kidneys. However a recent visit indicated that they had deteriorated again. I have not reached the diallysis stage and hope i wont but i am so disappointed at the "up and Down" of the kidney function which as most of you will know causes aneamia and susequently my heamaglobin ( blood cell) count is low at 10.9 causing so much tiredness. i get feelings of wanting to be sick but dont actually do it and cant face food but have put on so much weight due to the steroids. When i saw the doctor last week he upped the Pred to 5mg/day and i was still feeling the same, so i decided to "up" them myself to 20mg/day and the symptoms of sickness have gone and i feel better. One minute they say i am improving and the next i am getting worse. does anybody else have Kidney sarc/these symtoms?i

Re: kidney sarc

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-29-02 06:54

Ron,
It might be easier to understand what is happening if you think of prednisone not as being a 'cure', but as being a 'suppressor'.

Prednisone is a "band-aid" measure, something that is excellent to staunch the flow of the blood, but which doesn't necessarily fix the underlying illness, relying on the body itself to do that. There is a paper linked below, saying: "Corticosteroids contribute to the prolongation of the disease by delaying resolution" that expresses an opinion pretty close to my own.

You see, prednisone suppresses the symptoms of the immune disease by turning off our body's ability to produce the inflammatory biochemicals that are needed to produce the macrophages to fight the infection and clean up dead tissue. But unless the underlying reason for the inflammation goes away, the same inflammation will come back after the prednisone is reduced in dosage or withdrawn.

So if the inflammation was caused, for example, in response to a bacterial invader like TB or Rickettsia, the inflammation will come back as soon as the prednisone dose is reduced and the body is again allowed to fight that bacteria.

There is no objective evidence that prednisone is curative in and of itself. It suppresses the inflammation, but does not directly remove the underlying cause. Long term, greater than 6 months, use of prednisone can harm other body systems, especially inducing osteoporosis. At the very bottom of this page I have a list of medical references addressing the long term inability of oral prednisone, by itself, to staunch the progression of sarcoidosis

Poor kidney condition is very common in sarcoidosis. The prednisone itself can cause kidney failure. Hypercalcaemia can cause deposition into the kidney tissue. The inflammation in the rest of the body also makes it very hard for the kidney to do its job.

Since they say it is sarcoidosis, have they found it in any other organs rather than the kidneys? Sarcoidosis is usually a multi-system disease. Maybe you need to get rid of it elsewhere before the kidneys will have a chance to recover.

..Trevor..

Re: kidney sarc

Author: ss (---.kc.rr.com)
Date: 05-29-02 09:07

Trevor,
With Predisome there is another part of this:- steroids also affect the mood.

When a pt (patient) starts or increases the dose of Predisome there is a feeling of euphoria. When the dosing is decreased the mood may become blue.

SS

Re: kidney sarc

Author: Denise Testa (---.connect.com.au)
Date: 05-30-02 18:22

Hi guys,

I am wondering about Kidney problems as one of the first signs anything was clinical wrong with me, as opposed to symptoms which can be imagined... was that I had red cells in my urine. As I worked in the path laboratory that did the testing at the time, the girls in micro insisted I go for an IVP. I don't think they do those any more, but I didn't since I didn't like the sound of the test. Several years later when I really started to travel down the sarc hill - (I thought I had lupus at first) the red cells were still in my urine. By this time there were also problems with the blood, raised ESR, CRP and immunoglobulins etc but nothing diagnostic. I did a 24 hr Urine creatinine clearence test which was abnormal. Then they decided to find out where the red cells were coming from. The cells were crenated which meant they were upper urinary tract rather than lower urinary tract. The other more stringent tests I had were luckily in normal limits. I was placed under a very high profile professor at a teaching hospital who is a perfect gentleman, can't say that about too many specialists. Neither he or the immunologist I saw could come up with an answer, though I was getting worse by the day.
I organised a consultation with another immunologist. He examined me and reckoned my problem was cluster headaches. I said what about the blood tests and red cells in the urine. He said to me, "it's probably only thin membrane syndrome". The way he said it to me seemed to indicate that it was nothing to worry about - so for at least a year I didn't think anything more of it. When they found the hilar lymphadenopathy less than a month later, and things such as cancer and lymphoma were mentioned in the same breath as TB and sarcoidosis a great relief fell over all when the surgeon announced, "it's only sarcoidosis". Having lived with the disease for 2 years now, I know it's no not really a case of "only" and that made me wonder about thin membrane syndrome. Next time I saw the kidney specialist and he announced the cells were still there I told him the 2nd opinion immuno guy told me it was only thin membrane syndrome.
He said it very well could be, but the only way for them to know for sure was to take a biopsy and he didn't think that there was enough wrong with me to warrant the risk of the biopsy. which naturally I was pleased about.
I didn't think the ask him what it was, and he didn't tell me - so I came home and plugged it into Google and found out it wasn't a case of 'only', that some patients with the disease go on to have kidney failure. Of course I may not have thin membrane syndrome, nor does he think it is caused by the sarc, he said kidney sarc is rare. I have to have a couple more major kidney function tests in October. So for now it remains a mystery.

What symptoms occur with sarcoidosis which affects the kidney I wonder?

Denise

Re: kidney sarc

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-30-02 18:59

Denise,
Yes, Kidney-Sarcoidosis is rare, but Kidney-Failure in sarcoidosis patients is all too common.

There is a difference, and it is important to understand that difference. Kidney Sarc means the existence of granulatomous lesions or cysts within the kidney tissue. That is rare. Kidney failure is not, and it often results from the side-effects of Prednisone, Methotrexate, and the host of the other drugs given to sarcoidosis patients, as well as from the biochemicals produced within the body itself by the inflammation. The most obvious biochemicals to watch are Angiotensin II and the seco-steroid 1,25 dihydroxyvitamin D3.

Keeping the kidney and liver healthy is the #1 task facing sarcoidosis patients as they learn to live with this syndrome.

Keep smiling,
Trevor

Re: kidney sarc

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-07-02 11:57

Trevor,

Reading your caution to sarcoidosis patients about the toxicity of 1,25-dihydroxyvitamin D, I remembered this article where researchers were trying to find something similar to 1,25-dihydroxyvitamin D to treat cancer. It's called by various names, and in this study they use the name 1,25-dihydroxycholecalciferol (D3, calcitriol).

Cancer researchers are excited about the effects of 1,25-dihydroxyvitamin D on cancer cells, so they keep trying to find something that acts like 1,25-dihydroxyvitamin D without the toxic effects of 1,25-dihydroxyvitamin D. In this study, the mice they treated with 1,25-dihydroxyvitamin D had a 90% mortality rate by the end of the experiment. When they checked the mice treated with 1,25-dihydroxyvitamin D, 3/4 had mild bilateral renal tubular calcification. It wasn't much better for the mice treated with a similar vitamin D, 1/2 had mild bilateral renal tubular calcification.

Could this be what happens in sarcoidosis patients who have problems with their kidneys?

Belinda

Re: temporal arteritis

Author: pamela lewis (---.cache.pol.co.uk)
Date: 05-16-03 14:53

my mother was diagnosed with temporal arteritis several years ago and since then she has been perscribed prednisone. she has been told she has to take this medication on a long term basis, since then she has developed diabetes as an effect of taking the steroid treatment. can you please explain how prednisone cancause diabetes. many thanks for your help.

Re: kidney sarc

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-16-03 15:03

Pamela,
Prednisone inhibits the immune system by shutting down the signalling actions of a dimer protein called NuclearFactor-kappaB. This same protein is part of the body's defense against hyperglycemia. When it is inhibited by prednisone the body cannot react to changes in the blood glucose so easily.

Usually this is just type II diabetes, and will go away several months after the prednisone has been stopped. However, if the patient has been given insulin they quickly (within days) become insulin dependant, which is a permanent condition.

..trevor..
ps: this same protein is also responsible for the RANKL system that keeps our bones strong. By inhibiting it prednisone also causes loss of bone mass.

Re: kidney sarc

Author: Kathleen Stuart (65.121.96.---)
Date: 05-18-03 17:51

FYI -

This is a little off the subject, but I saw this article and wanted to alert everyone to the dangers of both Vioxx and Celebrex, fairly new anti-inflammatories.

As sarcoidosis already can be damaging to the kidneys, I would imagine these drugs could really wreak havoc on a sarcoidosis patient!!

www.collegesports.com/sports/m-footbl/stories/041203abt.html

Kathleen in Wyoming

Re: kidney sarc

Author: Denise (---.connect.com.au)
Date: 05-19-03 04:01

Trevor, I must have overlooked your reply.

I was not aware that sarcoid patients had a high level of Kidney failure. Have you got any figures or papers on this? I would like any facts mentioned for my GP.

Your paper on Avapro and migraine is a revelation, I will certainly telling the doc about this, and giving the drug a try.

Denise

Re: kidney sarc

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 05-19-03 22:42

Denise,

Perhaps I can provide you with a resource that will help you. This article, from the University of Alberta, has some information on sarcoidosis in "Systemic Diseases of the Kidney." Perhaps this has the information you are seeking (scroll down to page two). If not, let me know.

Belinda

Re: kidney sarc

Author: George Rahe III (---.clvhoh.adelphia.net)
Date: 10-10-03 20:18

I have a condition of back pain. I have had 2 disc removals and no fusions. My mother has Rumortiod arthritis and has had it in full strengnth since she was 33. I am 33 and have body aches and artherites of the spine. I have been checked for MS and I have no dead cells to the MRI with the fluid injected to the brain cells if they take the fluid or not and they did. MS was ruled out but I am living with constant back pain. I am a union steamfitter and lift 100 pounds a day and bend and twist all day long. I was on Vicodin for 2 years. I was taking 2- 500 milligrams a day and was fine. After 2 years I cant find a doctor to give me the Vicodin ES. I switched Doctors and he is giving me prednisone. It works better than the Vicodine but after 3- 5 day packs he is telling me I am not going to get it any longer. I cannot work and send my children to private school like I and my wife think they need in todays world. I can live without Vicodin but cannot live without Prednisone. I need an answer from somebody. I dont need drugs I just need an answer to my prolongred problems since 1997 with back pain. I am in desparate and in need of help I cannoit get out of bed in the morning and make money withiout the prednisone. If you can give me any relief, wheather it be more surgury or pain relief ( am now taking shots to the dics to reduse the swelling) please give me an email back. 33 and facing bankrupcy or help. Please consider me for ant type of new technique. George Rahe III

Re: kidney sarc

Author: kim (---.proxy.aol.com)
Date: 01-14-04 17:49

what started out feeling like a bad kidney infection one year later is still causing me severe pain amongst other symptoms. i have pulm sarc from 10 years ago but never needed treatment now they think it is back but arent sure wherei have just completed a series of test which im am now waiting for results anyday. just wondering what others ecperienced as far as the kidney what kind of pain they were in. thanks

Re: kidney sarc

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 01-14-04 19:07

Hi Kim,

Welcome to SarcInfo. I'm sure others will share with you their experiences with kidney pain and/or sarc kidney involvement and how they are resolving that problem.

Your sarcoidosis that was diagnosed 10 yrs ago never went away. It quietly smoldered in your body and may be the cause of your severe pain. You were probably not treated because your doctors considered the treatment options available to have an unfavorable risk/benefit ratio.

The Marshall protocol does not have that problem. It will not cause you any harm. It's important that you learn all you can about this safe, effective treatment option. Read the patient tutorials at the top of the page, talk with your doctor and let us know if you have any questions.

Meg

Re: kidney sarc

Author: Donna (---.jan.bellsouth.net)
Date: 01-20-04 12:13

Trevor and Meg,

For last few days(5) I have had (off and on) a decrease in urine output (just dribble) and my legs seem to be swelling. I drink plenty of water and tea. I also had pain in my back in the area of the kidneys. Yesterday, I could go just fine and my legs went down. Today me legs are swelling again and my output is down. I have not made an appt with my doc yet. I'm on the benicar 30mg-8hrs and minocin 75mg per protocol. This is puzzling to me, because the last time I had a kidney infection was in spring of 2002. In my diet I only had some lasagne on Sunday. The cheese I used had a low D content (I read all of my labels). Could this little bit have hurt me? I drink no milk. Do you have any suggestions.

puzzled,
donna

Re: kidney sarc

Author: Admin (---.vnnyca.adelphia.net)
Date: 01-20-04 12:20

Donna,
My immediate instinct is to stop the minocycline and make an appointment with Doc. I will post a more considered response later, and maybe the moderators can help me out as well.

Have you had your 1,25-D measured recently? What did your BUN and creatinine look like in the last bloodwork?

..trevor..

Re:low Heamaglobin

Author: Tony S (---.server.ntli.net)
Date: 02-02-04 13:08

I am a male of 49 who has had a kidney transplant 3years ago the problem I have is with my Heamaglobin it is up for a while as high as 18.5 then with medication it is brought down only it keeps droping I am currently at 9.2 I get alot of head aches feel very very tired have chest pains swollen ankles then they change the medication to bring it up again and so it goes on I have asked for the root cause but have had no explanation..... my current medication is MMF 500mg twice a day Rapamune 4mg ,Cardura 8mg,Metoprolol 50mg twice a day Nefedipine 20mg and Frusamide 50mg any advice or guide lines as to questions that can and should be asked

Re: kidney sarc

Author: charles chatman (---.kusd.edu)
Date: 02-19-04 11:02

I was diagnosed with sarcoidosis about 6 years ago when I was still in high school. I took predisome for about 2 years off and on but about a month ago I started to have pains in my side. I went to my doctor for test and he said my kidney protein level was up. So he put me back on predisome and cellcept to help control the kidney level. are there individuals that I can talk to about my condition? or do you have any recommendations?

charles

Re: kidney sarc

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 02-19-04 14:08

Hi Charles,

Welcome to SarcInfo. Prednisone and CellCept are both immunosuppressants with serious side effects and dangerous consequences of long-term use. Since bacteria have triggered your sarcoidosis, suppressing the immune system is contraindicated. This allows the bacteria to grow freely. The medications may keep the inflammation in check for awhile but there will come a time when your bacterial load is too great and your symptoms will flare again, despite the immunosuppressants.

Everything you need to know to put your sarcoidosis into remission is right on this website. I'll email you instructions to help you find your way around it.

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

Meg

drinking milk with pyelonephritis

Author: C. Parker (216.79.140.---)
Date: 07-03-04 08:42

My daughter was diagnosed with an UTI 2 weeks ago; the antibiotic did not work. Her symptoms worsened. She is now taking 1000 mg of Cipro once daily. She was instructed to drink lots of water. She is drinking massive quantities of water, her fever is almost gone (99.4), and she feels very good. Our question is simply, can she have one small glass of milk in the morning with breakfast? She is aware of the 6 hr. preceding/2 hr. after consumption of calcium that interferes with the full absorption of the antibiotic, Cipro. If we time it correctly, would it hurt her any to have one glass in the morning? We were also told that she could only drink cranberry or blueberry juice, not any other juices, with the infection. This is her 1st infection. It was contracted from a church camp where conditions were extremely humid, drinking water was not available, and bathing conditions were substandard. She is generally a very healthy 19 year old.

Re: kidney sarc

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 07-03-04 11:15

C. Parker,

Is your question related in any way to sarcoidosis or an inflammatory disease? This is a forum for questions related to those diseases.

Belinda

Re: kidney sarc

Author: George H. (---.229.136.228.cmts.haz.ptd.net)
Date: 07-09-04 12:44

I was diagnosed with sarc 10 years ago and have been on and off Prednisone since then, primarily to control the hypercalcemia caused by the sarc. My creatinine level has been 1.9 on (3) renal function panel tests over several months, while I have been on 10 mg of Prednisone every other day during this period. Prior to that my creatinine was up to 2.3 when I wasn't on Prednisone. Over the last three years or so, when I wasn't on Prednisone my creatinine would go up to 1.6 and then return to 1.1 while on Prednisone. I spoke to the Pulmonary specialist treating me about the Marshall Protocol and gave him the information from this site. He isn't interested in the Protocol and claims the Prednisone is needed to protect my kidneys by lowering my serium calcium. I have hyprtension and was able to convince him to switch me to Benicar, which he was only willing to prescribe @ 20 mg / day. He also referred me to an an endocronologist this week because a bone mass density test I took showed osterprosis. I had the same discussion with this doctor and gave him information on the Marshall Protocol. He looked through it quickly, said he would read it, but did not want to use the Protocol as a treatment. I live in eastern Pennsylvania. Is there a doctor near here that has an open mind to the Marshall Protocol treatment?

Re: kidney sarc

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 07-09-04 20:16

Hi George,

Welcome to SarcInfo. Your pulmonologist's attitude is typical. Do you see the pattern of relapse you've been experiencing with the use of prednisone? Did he warn you that long-term use would cause osteoporosis? Your calcium is elevated because your 1,25-D is elevated. Reducing it with Benicar, which also protects your kidneys, will resolve your hypercalcemia.

I'm glad that you recognize that you need a new doctor. I'll email you a list.
Let us know how you get along.

Meg

Re: kidney sarc

Author: erwin (202.124.139.---)
Date: 07-11-04 05:43

good day to everyone my doc prescribed me with prednisone 3x aday @ 5mg for 7 days because of my complaint of abdominal pains. It started with my high presence of redbloodcells in my urine and high creatinine levels (200 -140 range the past year). He prescribed me first with diff. antibiotic from doxycycline to cifomaxcine.But the feeling of being sick ,burning sensation comes from time to time. So now he wants me to take prednisone,and im afraid of the side effects.Should i take it or not .thanks in advance. By the way im from the Philippines so pardon my english

Re: kidney sarc

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 07-11-04 08:15

Hi Erwin,

Welcome to SarcInfo. Prednisone will lead you down a path of increasing oral steroids, repeated relapses and decreasing quality of life as your disease continues unabated.

The Marshall Protocol will treat the underlying cause of your saroidosis-bacteria- and put your disease into remission.

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

Meg

Re: kidney sarc

Author: elizabeth.roderick (---.server.ntli.net)
Date: 10-24-04 13:24

Dear Tevor,
My mother has sarcoid and kidney failure, not a lot is known of this illness in UK. I have had a long fight to find a suitable doctor for her. She is still suffering badly her quality of life is low. Please can you e mail me info about how she should be treated. She is on pred of course and worsening. What is the Marshall Protocol?
Thanks Libby

Re: kidney sarc

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 10-24-04 13:49

Hi Elizabeth,

Welcome to SarcInfo. How old is your mother? How long has she had sarcoidosis? What are her other symptoms? It's wonderful of you to try to find a way to help her.

Everything you need to know about sarcoidosis and how to put in into remission with the Marshall Protocol is right here on this website.

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.

Best,

Meg

Re: kidney sarc

Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date: 10-28-04 11:18

I was so excited to see your site, I read it until 2am. Today I am back looking for some help. I am 61, started with sarc at 21. Swollen hand, knew and ankle, ankle had such a high fever in it, it peeled like a sunburn, it was also really red. Then the sarc, a couple of years later, went to my skin, I had approx 25 lesions on arms and legs. Was on pred for a while. Then it was diagnosed in my lungs along with asthma (which I had come down with). Was on 30 mg pred for 1 year steady and off and on for many years. I have since lost my r kidney due to a cyst, my ovaries due to cysts. My eyes and nose are so sensetive that I stay indoors a lot. I also have diabetes and osteop, plus deg disc disease. I live at 4500 ft altitude. I cannot find a doctor who will really deal with sarcoidosis and I am 'sick' of lliving this way. PLEASE. I need help. I am fatigued all the time. If all I need to do to feel better is to follow your protocol, please send me info. I am considered renal failure by SS. There are probable other things I need to tell you, but I am so tired today, I can't think. Thank you, I feel there is light at the end of the tunnel with you.

Re: kidney sarc

Author: Lottie (---.proxy.aol.com)
Date: 10-28-04 20:17

Bonita,

Welcome to SarcInfo.

I understand your excitement. When I first found the site I was glued to it myself!

ALL of your "different" illnesses are very likely due to Sarcoidosis. Very few doctors know much at all about Sarcoidosis.

I recommend that you do as many of us have, and approach your doctors with copies of the information from the top of the page for physicians. My Family Practice doctor is prescribing medications for, and following my progress in the Marshall Protocol. I�m "teaching" him about the protocol, and we�re both learning along the way. And, it�s going well.

You may find the article "Advice on how to approach your doctor at our sister site, Marshall Protocol.com", useful when you speak with your doctor.

I urge you to continue to read everything you can, especially the "patient tutorials" at the top of all the pages.

And the first thing you can do that WILL help you towards your goal of getting well, is to please avoid ALL forms of vitamin D in food, supplements and sun. The information here will help you achieve that goal --Avoiding Vitamin D and Sunlight, on MP.com. You will be amazed at how much better you will feel if you follow the information and instructions.

Here is the information on purchasing the NoIR Amber Colored Sunglasses that are mentioned in the articles. You can call them at 1-800-521-9746 TOLL- FREE. They are very helpful. Be sure to ask for the internet discount.

If you still have questions after reading the information, please do feel free to ask.

Lottie

Re: kidney sarc

Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date: 10-29-04 21:40

The doctors removed my right kidney after I found (lots of) blood in my urine. It was maroon colored. I had a urine test in May, 1995 and in July my kidney (thru a cat scan) was found to be almost totally overtaken by a cyst. When I read your answer to Denise about cysts and the kidneys, my heart sank to my feet. I was sure I lost this kidney due to sarcoidosis but you just confirmed it for me. My doctors would not confirm the sarcoidosis in the kidney. I had sarc for 40 years now and each year I have more problems (mostly unconfirmed). I have had various biopsies which confirm the sarc but most my problems they ignore. I think the medical world does not want to be bothered with sarc patients. There are very few symptoms on your list I have not had. I now have eye pain, dryness and had a confirmed lesion on my brain. Getting irritated that they do nothing. I am in need of a doctor in my area who will do the Protocol. I am ready. Bonita

Re: kidney sarc

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 10-30-04 10:52

Bonita,

Benicar is renoprotective, but I'm afraid your serious kidney damage is going to make it very difficult for you to find a doctor who will treat you with the Marshall Protocol. You would need one with experience in treating kidney failure who is willing to learn about the MP. Keep in mind that this treatment plan always makes symptoms worse before they resolve. That will be especially tricky in view of your very limited kidney function.

I suggest that you speak with your nephrologist and ask him to call Trevor Marshall. If you want to search for another doctor, let us know what area you are in or can travel to and we'll send you a list.

Best,

Meg

Re: kidney sarc

Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date: 11-04-04 19:40

I have a few questions to help my decision making. Right kidney removed due to cyst. Blood up to 2 plus in left kidney. Doc claims I am what they call a 'bleeder'. Your advise above is well taken. On a scale of 1-10, what are my chances of success with MP? I live alone, is that going to be an impossibility once I start MP? I am wrestling here with a big decision. I would love to be 'normal' for the last part of my life, I am sick of sarc. Will all of my sensitivities be gone? I cannot even go to places other than my home, without, severe breathing problems from odors. Will this change? I am a doctor's worst nightmare, but I want to make an informed decision. I have lots of other problems going on. Diabetes, not able to take any meds due to allergies/intollerance. Pain in every bone in my body, this is only part of problems. I would appreciate any opinions. Thank you. Bonita

Re: kidney sarc

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 11-04-04 21:43

Bonita,

Your level of 1,25-D will hint at the severity of Herxheimer reactions that you can expect. Some people are too sick to do the MP if they live alone. I believe that the Marshall Protocol can help you. But you have so many serious health issues that you will require very close monitoring by your doctor because some of them will temporarily worsen as the inflammation resolves. This is, unfortunately, unavoidable.

Patients on MP.com with multiple chemical sensitivities (MCS) are reporting a lessoning of their symptoms so the MP should decrease your sensitivity to odors. The MP should help many of your symptoms. As I said, though, there will be a Herxhimer price to pay.

Best,

Meg

Re: kidney sarc

Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date: 11-07-04 16:41

Have an appt on Dec 8th with my doc. Am going to see if she will have the tests done before that and see if she is going to work with me. Will let you know my results. Very difficult to stay out of sun living in NM, but I understand the importance. Bonita

Re: kidney sarc

Author: karen rather (---.proxy.aol.com)
Date: 11-12-04 07:14

Could you please tell me how mainstream medicine makes a diagnosis of sarc of the kidney?

I seem to have many commonalities with the folks posting here. I am facing the possibility of nephrectomy due to a cyst, left kidney, superior pole, measuring 1.5 x 2.1 x4.1 cm. My left kidney itself measures 10.5 x 4.9cm.
I have a history of hypercalcuria, hyperlithiasis, hypertension, at times hypercalcemia, and minimally elevated PTH. I have consistently had blood in all urinalysis for over 10 years. My last tests showed:
microalbumen U-R flagged high- at 11.50 (norm range 0.00-2.00)
microalbumen/creatinine index U-R flagged- high at 83 (norm range 0-25)
I have been disabled from illness since May 2002.

If this is indeed Sarc of the Kidney, I would not want to have the kidney removed, instead treating the CWD bacteria. I am being told there is a risk of cancer, instead, when cysts reach this size, and changes have taken place where they are no longer a simple cysts (such as septation and calcification).

I have additional diagnoses of Late stage chronic lyme disease with cardiac and neuro involvement, Fibromyalgia, and CFIDS.

If the cyst development is an part of renal sarc, and not cancer, then I would certainly think it would respond to abx treatment aimed at CWD bacteria.

Can you pass information along to me so that I know how a diagnosis of kidney sarc is made?

Thank you,
Karen

Re: kidney sarc

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 11-12-04 11:35

Hi Karen,

Welcome to SarcInfo. The practice of medicine is not nearly as precise as you might think. The only definitive diagnosis of sarcoidosis involvement in the kidney that is accepted by the sarc experts is a biopsy. This is obviously a very invasive procedure when it involves a major organ and the result can be equivocable if they didn't get the right tissue sample. We don't encourage biopsies. I understand your fear of cancer that the doctors implied. Keep in mind that wasn't a certainty, just a possibility. Some doctors are biased towards removing a body part because then they don't have to worry about it. If your kidney still has some function, I would think you'd want to do everything possible to save it.

Your other diagnosis are screaming Th1 inflammation. And your history almost makes it a sure bet that you have a very high level of 1,25-D. Ask your doctor to test your D-metabolites asap. I'm surprised this wasn't done long ago given your problems with hypercalcemia. Post the test numbers here or on MP.com for us to analzye. This should convince one of your doctors to order the MP.

In the meantime, follow the MP guidelines regarding avoiding all sources of Vitamin D. This alone might make you feel a bit better.

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: kidney sarc

Author: John L (---.avaya.com)
Date: 11-16-04 11:45

I've had some discomfort in my kidney areas recently and wondering if it's herx or what. should I have a CRP test done? Is Creatine level important? I used to take a creatine supplement while working out till I got a kidney stone (which led to the discovery of sarc). My urologist at the time said "a hamburger a day" would give me plenty of creatine and that it would not have been a factor in my stone as it's "just an amino acid" -- any comments?
thx, as always

John L
Sarc diag 2/01-Lungs, Bowel, some neuro-: 1,25-D 40 and 25-D 24;started MP 1/03,felt good till relapse in 5/04 after bowel surgery; 1,25-D 65 and 25-D 29 started MP2 felt good till minor relapse 10/04; currently feeling good w/minor herx on MP2

Re: kidney sarc

Author: Meg (---.190.172.91.eau.wi.charter.com)
Date: 11-16-04 18:52

John L,

Your urologist knows a lot more about creatine than I do. Creatine (not to be confused with creatinine) is a popular dietary supplement among bodybuilders.

Your kidney pain should be evaluated by your urlologist because of your histroy of kidney stones. If you get an all clear, you can bet that the pain is due to your sarcoidosis inflammation. And, indirectly, kidney stones can be too.

Unless your doctor orders them, checking CRP and other inflammatory markers isn't necessary. They are expected to increase with the MP treatment and this can cause unnecessary alarm.

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: kidney sarc

Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date: 11-18-04 16:27

Got into trouble the other day, I got angry with the telephone company and told them they could have my phone, so they took it along with my internet service so I am using my girlfriend's email to let you know. Will get mine back soon. Wanted to let you know my test results. 1,25 Dihydrosy is 53 and my 25 hydroxy is 25. My doctor does not understand, I don't think, unless it is me that does not understand. Her remark was that I could take the test over again in a year, but as of now, it is considered normal. Where do I go from here and what do I do. She will work with me, if I need her to and you let me know my tests warrant the MP. Thanks for any info. Bonita

Re: kidney sarc

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 11-18-04 21:59

Bonita,
The Merck Manual maximum is 45pg/ml, you are beyond that. With a level that high, I bet you ren't feeling very well. I am surprised you were told yours was normal.

Sarcoidosis is a cronic progressive disease and it does not go away on it's own. Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away.

You need to stop the damage now. The prescription drug, Benicar, a very vital part of the Marshall Protocol, is renal protective. I recommend you see your physician very soon to begin the MP. Print the Papers for Physicians to take with you or mail them prior to your appt.

Please re-read the Patient Tutorials found at the top left on the Main Menu. I hope you are following the guidelines of avoiding sun, ingesting vitamin D in food or supplements, and protecting your eyes with Noir's. These simple steps will help you. Good luck in finding the needed support from your physician.

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: kidney sarc

Author: Bonita (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date: 11-26-04 19:18

Is extreme urine odor an indication of sarc attacting my only remaining kidney? My kidney specialist said that I am a "bleeder" and not to get excited unless the blood in kidney is 2 plus or more. Still get worried after losing the r kidney so quickly to a cyst. Will be going on MP soon, I hope. See doc on Dec 8. Vit D readings were 53 and 25. Bonita

Re: kidney sarc

Author: Lottie (---.proxy.aol.com)
Date: 11-27-04 19:41

Bonita,

It is not possible to know if odor alone is a result of Sarcoid attacking your kidney. Only your doctor can help you to find that out. Many things can be the cause of odor. One thing you can do that might help is to increase your fluid intake, as sometimes an odor is from the urine being very concentrated. However, you should only do this if your doctor has not told you to keep your fluids at a reduced level.

Even though your doctor said that your lab work is "normal", you and she need to realize that the inflammation is shown by the relation of the two "D�s" to each other. And, as Caroline stated, the normal D 1,25 as listed in the Merck Manual is 45. That is why we ask for the actual numbers.

Your D ratio is 2.12 with 1.25 (plus or minus 0.5) being the normal. And, 99.43% of the poplulation would have a lower D 1,25 level than you do. This does show that you have significant inflammation going on. The inflammation could be anywhere in your body, including your kidney.

You should not wait for a year to recheck the D metabolites. The ones you have had done, show that you do have inflammation going on, and that the Marshall Protocol is the best choice for reducing that inflammation, and getting well.

I hope that your doctor is willing to work with you regarding the MP. If she has any questions, please be sure that she knows that Trevor is willing to speak with physicians. She can also post questions in the "Private Section for Medical Professionals" section on our sister site, at www.MarshallProtocol.com.

In the meantime, please be sure to avoid vitamin D in your food, you still want to lower your 25 D which helps to provide the fuel for inflammation. And, of course, avoid the sun and flourescent lights. If you haven't already, you should cover your windows to block the sun. I hope you have also gotten the NoIR glasses to protect your eyes, inside and out.

Best wishes, 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: kidney sarc

Author: Ms Dale (---.proxy.aol.com)
Date: 02-27-05 03:41

In this section regarding Kidney Sarc - has anyone been through Kidney
Herx experiences on the Marshall Protocol?
If you have - would you please share your experience.

Thank you.
Ms Dale

Re: kidney sarc

Author: Beverly (---.client.comcast.net)
Date: 02-27-05 05:55

I have not started the MP yet. Blood tests are scheduled to be conducted next week. Currently on 20mg pred daily.

I do have a recent concern though regarding kidneys. The past two mornings upon awakening, I have some serious kidney pain on both sides. It is not my back nor muscles. It is definitely something going on in my kidneys. It usually goes away after I get up and move around for a while. I have increased my water intake and also added cranberry juice. I guess my question would be.....does every organ have to be biopsied to confirm if you do or do not have sarcoid in that particular organ? Is it necessary to go that far to properly treat the condition with the MP? Or if I know for instance the disease is in my lymph nodes.....do I have to endure further testing to see where else it might have invaded?

Bev

Beverly
McKinney Tx

Re: kidney sarc

Author: Ms Dale (---.proxy.aol.com)
Date: 02-27-05 06:02

Hi Beverly,

The National Institute of Health (NIH) quotes:
"Sarcoidosis is a "multiorgan" disease."
"Only one organ biopsy is needed."
"Today, it is known that sarcoidosis can affect almost any part of the body"

I hope that answers your question of above.

Ms Dale

Re: kidney sarc

Author: Diana (---.cache.pol.co.uk)
Date: 02-27-05 12:44

Ms Dale,

I have had pain from my kidneys which I am sure was herx. I have had a bit of a gap from this, but a couple of days ago tried my first 100mg Minocyline, and hey presto there it was again. My bladder was behaving worse than usual too, but whether that was the bladder's fault or the kidney's I cannot say. I'll pay more attention if it happens after tonight's dose!

Diana

Re: kidney sarc

Author: karen rather (---.proxy.aol.com)
Date: 04-07-05 15:21

Ms. Dale,

When I am herxing I experience "flank" pain, or kidney pain. This is a pain on the lower sides/back if both kidneys are involved. (only one can hurt, too, though).

The area is your lower back, just above where your hinny stops and your back starts

I have flank pain with every herx. Have a cyst on the left kidney--and just an obnoxious kidney on the right.

To be on the safe side, though, it may be a good idea to take your temperature, and check for nausea. Kidney infections usually present with an elevating temperature, which can become quite high, and often nausea, along with flank pain.

Best wishes,
Karen

Re: kidney sarc

Author: shirley wales (---.proxy.aol.com)
Date: 04-18-05 22:55

i have read all letters from patient with sarc in kidneys.it is all foreign to me.i have sarc in both kidneys,all i have taken is prednisone.my doctors doesnt seem to take it serious.i have a cyst on one kidney ,i know. please tell me what i should ask my doctor to do.ihave had sarc in kidneys going on 4 years.creatin runs 2.2 to 2.5 for over 3 years.

Re: kidney sarc

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 04-18-05 23:24

Hi Shirley,

Welcome to SarcInfo!

Sarcoidosis is a serious disease. If your doctor doesn't take it seriously, you may wish to begin searching for a physician that will help you. At it's worst, sarcoidosis kills. Prednisone is absolutely the wrong treatment and only allows the Cell Wall Deficient Bacteria at the root cause of your disease to grow and flourish while your immune system is compromised. When you discontinue prednisone, your symptoms rebound with a new vigor.You can learn more about the damaging effects of prednisone on the many links below. Prednisone cures nothing, it is a band-aid.

Sarcoidosis is a systemic disease that will not go away by itself. Read here: Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away

You can begin now to help yourself by avoiding ALL sources of Vitamin D. Eliminate food items contianing D, discontinue supplements with D and protect your exposed skin from sun exposure. Order NOir's to protect your eyes both inside and out doors. You will find further information regarding your eyes here: discussion of eye protection.

In addition to the above, I suggest you have your D metabolites tested so that you have a baseline to share with us. That way we can better help you. How does Doctor Test My D Metabolites.

I would also like to remind you to not accept the results of your D metabolites as "Normal". Please call and obtain your actual numbers, both 1,25 D and 25 D. When you do, post them here for interpretation.

At our sister site Marshall Protocol you may find advice on approaching your physician here:A Member offers Suggestions to Get Your Doctor on Board with the Marshall Protocol.

I will be sending you more information to your Inbox. I hope this helps you.

Sue 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: kidney sarc

Author: Bonita Neher (---.nas2.albuquerque1.nm.us.da.qwest.ne)
Date: 04-19-05 08:03

Shirley,

My name is Barney, I am a patient in Phase 2 on Marshall Protocol. I am 61 years old and lost my right kidney to a cyst in 1995. I have had sarc for 40 years and have lost various body parts to sarc. I do not plan to lose anything else.

I found sarcinfo in October 2004. To be sure it really worked, I covered over all my windows and avoided all Vit D in food. This was really hard for me because since 95 I have tried to eat to control the diabetes that came at the same time they removed my kidney. In May of 95, my urine test was perfect, but in July 95, the blood count was too numerous to count, the cyst had completely over taken my kidney.

A friend taught me how to do Atkins Diet. I was so allergic/intollerant to all diabetes meds including insulin, that diet was the only answer I had left. Then I had to delte even more foods (with Vit D) out of my diet. I felt so cheated in life, but have discovered how to supplement ie (1 whole egg is exchanged 1 egg white plus 1 teaspoon of cooking oil) thus my life wasn't as bad as I thought.

If you want to approach your doctor this is my suggestion:

Print out all the papers for Physicians that it suggests at the top of this page and take them to your doctor. I did this and left them with her nurse and asked her to read them and decide if she would be my primary care doctor thru Marshall Protocol. Return in one week to ask their response.
Next get your doctor to send you for your 1,25D and 25D blood tests and make sure they are frozen.

Marshall Protocol is the best thing I have ever done for sarc in my life and believe me I have tried a lot of things. I have a new outlook on life. If you need anymore information or just want moral support, please contact me personally and I will be of service. I am not the slightest bit afraid of doing MP even with only 1 kidney, which by the way, is working great.

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Historical perspective on Sarcoidosis:

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

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