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 The material here provides useful background, but most of this site is now out-of-date.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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 Archived General Questions-Please do not post here
Author: Admin (---.ventca.adelphia.net)
Date:   12-30-04 18:49

Many folks arrive at SarcInfo and just get 'blown away' by the huge amount of information here. It will take you some time, maybe weeks, to read all the stuff which is important to your remission.

SarcInfo focuses on the medical and technical issues surrounding Sarcoidosis.

Every message you post on SarcInfo will be read by the moderators, who include nurses and other health professionals.

Since many of your questions are more general, like "What do I do?", and don't fit into any of the specialized topics already created, this thread is for you to leave those questions in. Questions you leave in this thread will generally be archived after a week or so, so feel free to ask questions about your specific situations and past history.

Welcome to SarcInfo
Trevor. (Admin)

ps: Don't forget to click on the
"Older Messages" link at the top-right of the front page, there is much more
information here than can fit on the front page.
pps: There is a "Search" button on every page. Make sure you select a date range of "all dates" if you want an exhaustive search of the whole database.
 
 Re: *** Please Ask General Sarc Questions Here
Author: wolf@p.. (---.agstme.adelphia.net)
Date:   12-31-04 22:21

if you have diabetes and are on a sliding scale, and you take presnisone, is there any way to control how high your blood sugars go up.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-01-05 01:19

Wolf,

It is goiing to be very hard to control your blood sugars as long as you are on prednisone. Sliding scale use of insulin will help as will a strict low carbohydrate diet. But weaning from prednisone should be your first priority.
Many sarcoidosis patients on the MP have had to do this. Let us know if you need any help or support in this regard.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Pamela Butcher (---.gci.net)
Date:   01-01-05 16:29

As a diabetic who has been put on prednisone several times I can tell you that it is extremely difficult to control your blood surgars. Especially if the prenisone makes you continously hungry. I had more success with using Lantus which is a long acting insulin and will cover you throughout several hours and then you cover yourself with regular if needed. I found I could keep my level below 200 most often and only and to use 2-4 units of regular here and there. But you need to get off the prednisone as soon as you can as it will do you more harm than good.

Good luck

11/04 Pulm Sarc, Diabetes 12/07/04 Benicar 40mg x 4
 
 Re: *** Please Ask General Sarc Questions Here
Author: Sherley A. Alcorn (---.dsl.wacotx.swbell.net)
Date:   01-02-05 10:31

I need to find a doctor in my area that is associated with the Tri-Care Prime program with the military. I am a 56 year old widow of a retired deceased US Air Force veteran, living in Temple, TX (76501) which is near Ft. Hood, TX. Due to my income I have had to remain at the military facility, but now that Tri-Care is venturing out to the private hospitals and clinics, I may be able to make other arrangements if I knew where or who they are in this area.

I am not having any luck with finding a doctor and the one that is assigned to me at Ft. Hood makes me feel as if she has no interest in me or the Sarcoidosis disease.

I was diagnosed with this disease in November 1989 and have been doing some serious suffering since then. I have even contacted Social Security a few years ago to apply for disability due to the difficulty in breathing and inability to walk for long distances. They wrote me back and told me that they are aware of the symptoms and risks of the Sarcoidosis disease, and that once I go blind and my kidneys shut down for me to contact them again and they would be more than happy to assist me. (They really know how to make a person feel good about themselves.)

My doctor has assured me that whenever I complain of any pain that since I have this disease I am probably going to have pain for the rest of my life. My problem with that is this, can I have some medication for the pain? She has told me that I can only have a prescription for Darvocet-N-100 for up to 60 pills once every three months, irregardless of the need for it, and that I could get me some pain medications across the counter that should be just as effective. What a joke that was, since I've tried almost everything that's on the shelf over these years trying to get some relief.

I just recently had my gall bladder (Laparoscopic surgery) removed on Dec. 3rd, and I'm still recovering from it since I wasn't given any antibiotics to come home with. Since the surgery was done, the two of the incisions in my side have busted open every time I bend over or sit down on the toilet and they have been draining blood and puss. I just begain treating it myself with a triple antibiotic ointment that helped very slowly but did stop the draining three days ago. I wasn't able to get an appointment due to the holidays and I understand this, so I do believe it will be just fine now.

On the 25th of this month I am going to have the torn rotator cuff on my right shoulder repaired and would like to know if there's anyone out there that's had this surgery done and what should I expect with the recovery since I have the Sarcoid disease.

I would like to thank you for whatever information you can get for me.
 
 Re: *** Please Ask General Sarc Questions Here
Author: pauletta (---.rhmdky.adelphia.net)
Date:   01-02-05 11:44

Hey! I need to know if anyone has found that sarcoid can cause your d-dimer to be 2200, when normal is below 500. I was originally diagnosed with sarcoid in March of 2004, but since going to Mayo clinic they say it is not sarcoid and they only know that it is necrotizing granulomas from an unknown cause. I am at my wits end with all of this......I have been treated with TB drugs, anti virals, antibacterials and anti fungals and prednisone with no help from any of them.

Please if any one has an idea, especially about the d-dimer, please point me in the right direction.

thanks for your time.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-02-05 16:11

Hi Sherley.

Welcome to SarcInfo. Our expertise is helping patients and doctors recover from sarcoidosis using the Marshall Protocol. We have a short list of doctors who are already using the MP and a list of other doctors who might be supportive. Whether or not any of them are on your medical plan would not be known to us. Let us know if you would like this list for Texas.

Most of us have had to search for a supportive doctor and then convince him/her that the MP was the safest and most effective course of treatment. This requires that you educate yourself about this cutting edge medicine. In this MP.com thread, A member offers suggestions to get your doctor on board with the MP.

Pain is a common symptom with sarcoidosis and is relieved with the MP. You can start by avoiding all sources of Vitamin D. This alone might make you feel better. The following articles will help you understand the importance of avoiding sun/lights and ingested Vitamin D when you have a Th1 inflammatory disease:

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS ON PERSONS WITH TH1 INFLAMMATORY DISEASE

AVOIDING VITAMIN D AND SUNLIGHT

PROTECTING YOUR EYES

Avoiding D Vitamin Food Sources While on the Marshall Protocol

Your failure to heal properly following your gallbladder surgery may be due to your sarcoidosis. High levels of angiotension are part of the disease and associated with poor healing. For that reason, we recommend that elective surgery be postponed, if possible, until you can reduce your inflammation with the MP.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-02-05 17:15

HI Pauletta,

In August, you asked for and were sent a list of doctors who might support you with the Marshall Protocol. I see that you've tried most of the standard treatments in a relatively short period of time. Now it's time to try the best treatment- the MP.

D-dimer is a protein that is released into the circulation during the process of fibrin blood clot breakdown. Th1 inflammation causes excess fibrin formation. Treating and eliminating the inflammation with the MP will normalize the fibrin levels.

With all due respect, the Mayo Clinic is not infallible. Trevor has said, " that mild necrosis can be observed in sarcoid granuloma, and not just in rare cases. I have seen pathology on several sarc patients noting such necrosis. Usually in a proportion of the granuloma and not in every one."

Caseating or non-caseating are gross descriptions and not terms for microscopic images. Non-caseating describes the grossly visible lesion or injury, which doesn't look like cheese. Non-necrotizing describes the microscopic appearance of granulomas that do not contain dead/dying debris.

Here is a picture of a caseating granuloma.

Dr. Rosen, who spent years studying granulomas, said, "Necrosis, usually minimal and focal, may also be seen in the granulomas of sarcoidosis." The use of the terms "caseating" and "non-caseating" to describe the microscopic appearance of granulomas, although prevalent, is inappropriate since the term "caseous" applies only to the grossly visible cheese-like appearance that may be associated with necrotizing granulomas, necrotic neoplasms and other types of necrotic lesions. There is no typical microscopic appearance that corresponds to the gross appearance of
caseation.

Trevor has a link to Dr. Rosen's site on a page of his tutorial "Why Did I Get Sarcoidosis? Why Me? It includes information and photos about necrosis in sarcoidosis.

Have you had your D-metabolites tested? This is the critical test you need. What medications are you taking now?

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: *** Please Ask General Sarc Questions Here
Author: itiona (---.client.comcast.net)
Date:   01-02-05 18:40

hi team,
I just need to know if 50 mg can be ones highest dose instead of 100mg
of minocin? I believe the 100mg may be to strong for me. Can I use 50mg for the duration of the protocol?
Thanks

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-02-05 18:54

Itiona,

As long as 50mg of minocycline plus the phase two antibioitic are provoking a Herxheimer reaction, you can continue with that lower dose. When you no longer get a Herxheimer response, you should ramp up to 100mg of minocycline every other day. Each dose of minocycline (and the other antibiotics) has the potential to target a different species of bacteria. So you want to try all recommended doses, as tolerated, and (in time) all the recommended antibiotics combinations.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: pauletta (---.rhmdky.adelphia.net)
Date:   01-02-05 19:47

Thanks, Meg for getting back to me so fast! I have had my D levels checked and they were both low....at the moment I can not remember the numbers. My ACE levels have never been elevated. I do maintain an elevated ALP level.

You asked about my medications, well, now I am on percacet and hydrocodon and some adivan......so, take a pill and be quiet....you all have heard that approach.

I have been treated very good thru all of this, but now that no one will put a name on it, everyone is just shying away.

I do not know if I have Sarcoid, but I sure would like to have a name put to it! It is frustrating.

Thanks for your help.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-02-05 20:24

Pauletta,

'Low' D-metabolite results can still be abnormal and evidence of a dominant Th1 immune system response with justification for treatment with the Marshall Protocol. Please post the exact numbers here so we can help your doctor interpret them.

The MP is simple but quite detailed. It is important that you educate yourself with SarcInfo and marshallprotocol.com. There are many MPers who do not have a definitive diagnosis but an open-minded doctor will recognize your inflammation and treat it with the safe MP.

Have you been avoiding all sources of Vitamin D?

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: *** Please Ask General Sarc Questions Here
Author: Martin Bardram (---.proxy.aol.com)
Date:   01-03-05 08:09

Hi there, Don't know if im posting in the correct area but here goes.

My name is Martin. I was Diagnosed with sarcoidosis back in april 2003 (lungs). I have been on Steroids ever since, starting on 40mg then gradually reduced down to 5mg, I started to recover but last month my old symptoms came back and after seeing my consultant they found through x ray that the sarc was rife again, so they have upped my steroids again to 30mg.

My question is. I live in Yorkshire, England. Nobody in the uk seems to support the Marshall Protocall. All the doctors and consultants insist that steroids is the only treatment and that it will go away in 2years or so. I know that this is incorrect through doing my own research. Does anyone know of any consultant in the uk that supports the Marshall protocall that i can get in touch with. Also does anyone know of any UK web support sites.
I am hoping to start up a web site and an awarness campaign for the uk so any info and emails would be greatfully appreciated. Many thanks Martin.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Tim C. (---.boi.hp.com)
Date:   01-03-05 10:56

I have a concern that I am not Herxing. Following are the facts.

1. Arrythmia problem in May '04 lead to CT scan (suspected pulminary embolism) and Lymph node biopsy.
2. Diagnosed with Sarc on June 04. Generally, my sarc symptoms have been mild with occasional mild fever, daily body aches, arthritis pain, chronic cough for the past 18-months.
3. Found this site in June '04.
4. Significantly limited Vit D intake and light exposure since July '04
5. First visit to Dr. to start MP on 12/13/04.
6. Started Benecar 40 mg's every 8-hours for a week before starting Minocycline on 12/20/04. Initially light headed. BP is now typically in the range of 115/74. Sometimes it drops a bit lower. Before starting Benecar it was in the 140/90 range.
7. Started Minocycline at 25 mg's every 48 hrs for a week. Felt like a truck hit me the first few days, but by the end of the first week I felt great.
8. Bumped the dose up to 50 mg's every 48 hrs on 12/28, and have continued to feel great....better than I have in over a year.
9. I got my first labs back last week from blood drawn on 12/13/04. I highly suspect that the labs were not done correctly. My 1,25D was at 48 and there was no report on my .25 D.

My concern is that I now feel so good... (talk about looking a gift horse in the mouth!!!).....I thought that the Minocycline was supposed to make me Herx more.

Under the circumstances I am wondering how long I should stay at 50 mg's Minocycline. I am also wondering if this is normal for persons who have only mild sarc symptoms, and who have been controling D for 6-months prior to starting the protocol.

Thanks,
Tim C.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Marilynn Doyle (---.proxy.aol.com)
Date:   01-03-05 11:45

Hi all.

Just an update. I started Z on Wed 12-29 and reduced my Min to 50 mg as suggested. I continued 50 of M Fri 12-31 and today 1-3. I have felt no diff from before, still terrible breathing and some coughing up. Just changing my clothes drops my saturation down to 82 while on O2. No other herx.

My lungs acted this way before Pred. Will they just keep getting worse or as the bacteria are killed will I be able to walk again with oxygen more than 15 feet without stopping and sitting for 5 or more min to get my O2 back up again. This is all the time now, sometimes just standing up drops My O2 drastically down.

Should I stay at 50 mg of min or ramp up? When do I go up on Z. With no other herx or after Min is up to 100mg and no herx?

If the breathing gets much worse I don't think I can make it without intervention. Before I started MP I felt good and could run all over and go places on oxygen without a problem. It was not always that way but I was at a good time. I could even sit without oxygen. I knew things had to get worse to get better but now my breathing is worse than it ever was before except when I had pneumonia.

I am hoping to be able to get to the doctor on Feb 2nd without a wheelchair. That might shake up my new doctor more than I want. I don't want to loose him!

Let me know what to do with my meds. Have a Very Happy New Year and thanks for all your great imput and caring, Marilynn

Signature on file
 
 Re: *** Please Ask General Sarc Questions Here
Author: Tim C. (---.core.hp.com)
Date:   01-03-05 13:45

OK...I think I have just answered the question I asked 4-hours ago. After almost week of no herx...it's back. Good news...I feel like a truck hit me again.
Thanks,
Tim C.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Julia (---.cache.pol.co.uk)
Date:   01-03-05 13:47

Hi Martin,

If you open up "Older Messages" at the bottom of the message list, you'll find one called "UK Patients". It also gives you a link to older UK messages.

There is a UK website which was started with the purpose of raising the profile of antibiotic therapy for autoimmune diseases in the UK:

http://health.groups.yahoo.com/group/abtuk

We are few in number as yet, but there is definitely increasing interest in the medical world here.

Julia (Belfast)

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 15:03

Hi Martin,

Welcome to SarcInfo. Don't give up your search for a doctor who will help you with the Marshall Protocol. There are a few people in the UK who have found supportive doctors. You might visit marshallprotocol.com and do send a private message to anyone from the UK who is on the protocol. They may be able to share a doctor's name with you.

Persistance will pay off and the alternative is just not acceptable.

Good luck,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 15:09

Tim,

Thanks for sharing your experience. It's a great illustration of why the MP guideline cautions to stay at one dose of minocycline for at least a week. That Herx 'truck' can sneak up on you. Each increased dose has the potential to target different bacteria in different tissues.

Happy Herxing,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 15:25

Marilyn,

You've only just started the second phase which typically take at least a year to complete. This MP.com FAQ, Why does the Marshall Protocol take so long? has a general timetable.

Since poor pulmonary function is your major Herxheimer reaction, I would encourage you to keep a record of your oxygen saturation levels and your activity so that you can objectively record how you are doing.

The worst Herx reaction often occurs during the fifth day of the Z ramping schedule which is where you are at right now. I would suggest that you not increase your mino dose until you have been through at least two Z cycles and know how you are reacting to it. And that you not increase your Z dose until you feel at least some brief improvement in your symptoms.

Your increase dyspnea (shortness of breath) and poor activity tolerance are indications that occult bacteria are being killed. I'm sure that it is difficult to endure this worsening of your respiratory function. You may have felt better before the MP, but the bacteria would continue to multiply and the end result is respiratory failure.

If you think that you need a break, you can discontinue the antibiotics for awhile. But if the Herx is tolerable then you should continue. It may take some months before you notice a significant difference in your pulmonary function. I hope you will hang in there.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Marilynn Doyle (---.proxy.aol.com)
Date:   01-03-05 17:20

Meg,

I understand what you are saying with one question. I don't seem to be waxing and waning my breathing has stayed steadially bad since Thanksgiving but is also getting steadially worse not waxing and waning.

Perhaps that is just how my body is handling it.

Clarifying what you recommend. I will stay at 50 mg of M for 2 cycles and then if all is well I will ramp up. With the Z should I ramp up if I feel no more herx before I am at 100 mg of M?

Sorry I am not understanding, Thanks again, Marilynn
 
 Re: *** Please Ask General Sarc Questions Here
Author: Carol (---.proxy.aol.com)
Date:   01-03-05 18:41

Meg,
Today my GP that was going to help me, tossed my MP papers in the trash. Told me I need to be on 30 mg of Prednisone a day. And sent me to get my hips xrayed (long term steroid use) duh, is that not a light bulb moment. I have been off steroids now for about four months and I refuse to get back on them. I have suffered much pain. I will try to get a referral when xrays come back. I have been in Physical Therpy for two months now and was told that the steroids have destroyed my bone in my legs that fit into the hip(no surprise there) but He still wants me to take steroids again. I have a list of four Doctors in my state (Oklahoma) that have use MP. If you can add to that list, please e-mail them to me. I will push forward ........I will start the Marshall Protocal. Just a delay, a bump in the road. I will not give up. I know this is the answer for this disease. So I will push forward for the cure. Thank You, Trever and staff for giving me hope, and knowledge to move on.

Cheers,

Carol

Dx: biopsy 98' Stage IV Sarcoid, Lungs and Lymph Nodes. D-test By Quest, Frozen 8/12/05 D-1,25=46 D-25=17 Avoiding D sun/light/food. NoIRS. Started Benicar 40mg q6h 8/19/05 off Predisone
 
 Re: *** Please Ask General Sarc Questions Here
Author: Carol (---.proxy.aol.com)
Date:   01-03-05 19:26

Meg, Sorry I forgot to add . The doctor did add some pain meds. & Z-pak. I have been off Zithromax for two months so the Benicar would be safe. I have been taking Zithromax on a monthly basis for almost a year. I pose this question. Without benicar, does Z do anything to help?

Thanks,

Carol

Dx: biopsy 98' Stage IV Sarcoid, Lungs and Lymph Nodes. D-test By Quest, Frozen 8/12/05 D-1,25=46 D-25=17 Avoiding D sun/light/food. NoIRS. Started Benicar 40mg q6h 8/19/05 off Predisone
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-03-05 19:32

Tim,

Your story indicates you are progressing exactly as expected. Those hours of feeling wonderful - between Herxing - make you want to dance a little jig in celebration, don't they? It's a nice glimpse of what is to come, over time.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 21:09

Marilyn,

Sometimes the Herxheimer doesn't wax and wane. I suspect that if you discontinued both antibiotics that in a few weeks, when the Z was out of your system, you would feel better. But that would only be a palliative, not curative, solution.

You can ramp either the mino back up first or continue the Z ramping schedule but don't ramp both up at the same time.

Take good care,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-03-05 21:42

Carol,

There are folks with chronic Lyme over at MP.com who report having taken very high doses of Zithromax with little effect. These same people are also reporting significant Herxheimer reactions with tiny doses of Zithromax with an adequate Benicar blockade in place.

I'm glad you will be persistent in your search for a doctor. Luckily you have the option to fire the one who is so close-minded.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Carol (---.proxy.aol.com)
Date:   01-03-05 23:13

Meg,
Thank you so much for being such a good team leader and giving out wonderful support. We do need that from time to time. I will move forward in search of a doctor willing to learn something new and to help give life back with MP. I did see that there is one Doctor in Tulsa that is using MP so I will try friday to get a referral. He is booked two months ahead. Wish me luck. I think I will hold off on the Z-pak just in case I get in sooner. If you know of anymore Doctors in this area . Feel free to email me those. I will not give up. My journey for welliness will move on.
Thanks again for your kindness.

Cheers, Carol

Dx: biopsy 98' Stage IV Sarcoid, Lungs and Lymph Nodes. D-test By Quest, Frozen 8/12/05 D-1,25=46 D-25=17 Avoiding D sun/light/food. NoIRS. Started Benicar 40mg q6h 8/19/05 off Predisone
 
 Re: *** Please Ask General Sarc Questions Here
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-04-05 18:04

Hi everyone, Happy New Year . . .

I can't find the info on what kind of injection to avoid at the dentist office.
I have an appointment in the morning for a filling.

Tanks,

Rck in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .
 
 Re: *** Please Ask General Sarc Questions Here
Author: itiona (---.client.comcast.net)
Date:   01-04-05 18:17

Hi meg I was wondering if the board is still active. From my end it appears that their is no activity from the board members.
Thanks Itiona

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-04-05 19:28

Rick,

You want to avoid epinepherine.

It is often used with the novacaine injections to numb the area. The dentist should have novacaine without wpinepherine available.

Take care!

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: *** Please Ask General Sarc Questions Here
Author: Rick MacKinzie (---.dsl.pltn13.pacbell.net)
Date:   01-04-05 19:32

Thanks Lottie . . .

Rick in Napa

Sarcoidosis - Lung - Initial Blood - Jan03 1,25-D 47.9, 25-D 19.3, ACE 122; Began PhIII May 03/05 - Flushing . . . Last Blood May 05 1,25-D 23, D-25 12, ACE 89, D-Ratio 1.9 10/05 Living w/little problems . . .
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-04-05 19:43

Itiona,

I believe that you had a question about cancer and a connection with low 1,25 D from another thread.

The "low" 1,25 D levels that we normally have with our avoidance of D and sunshine should not make us more prone to cancer. And, the total avoidance is not life long. We will become less sensitive to light as we heal. That does not mean that we will be able to go out and sunbathe, but "normal" activities with some care to cover won't be as much of a problem. And, 15 minutes of exposure of the forearms to the sun a day provides enough vitamin D for us. So, normal activity will generally maintain our bodies with D when we can go outside more often.

In the meantime, we need to be careful of the sun and vitamin D.

Please remember SarcInfo is staffed entirely by unpaid volunteers, all of whom are patients like you, in varying stages of recovery. Some are doing so well, that they are able to get out and enjoy their life, but still work to help others on the site. New patients ask for help each day. If we don't get to your questions quickly, I hope you'll understand.

Lottie

 
 Re: *** Please Ask General Sarc Questions Here
Author: itiona (---.client.comcast.net)
Date:   01-04-05 20:22

Thanks Lottie
I'm sorry for nagging but I have been very qurious about that topic for some time. Please believe me when I say I really apreciate all of the staffs time and effort each and every day.
Stay well
Peace and blessings Itiona

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: *** Please Ask General Sarc Questions Here
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   01-04-05 21:00

I've been on Benicar every 6 hours for about a year and have weaned the Pred. down to 5.5mg. I have been feeling like all the Sarc (CNS) symptoms are back along with a burning pain on the front of my right thigh. Depressions has also gotten very bad dispite the fact I'm on an antidepressant. I spent 2 days in bed.

Saw my doc tor day and she is increasing tthe antidepressant and suggested I take 40mg of Benicar 5 times a day to see if I feel better. How do I space out the Benicar at 5 doses a day?

Thanks for your help.
Sue in St. Louis

Sue in St. Louis
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-04-05 21:27

Sue,

It sounds to me as though your immune system may be "kicking in" some as you've come down on the Prednisone. What you describe sounds like what was happening to me when I got down around 5mg of Prednisone a day. (I even have a place on the front of my right thigh that was numb, but started burning, and still does off an on)

And, it also sounds like herx. I have been sleeping much more than I've been awake for the last few weeks. I'm on 100mg of Minocycline every other day. I finally had to really think, remember, and remind myself that it is part of the herxheimer! I was starting to feel as though I was just getting "super lazy" and more depressed.

When I was weaning off of Prednisone, I did increase the Benicar to about every 4-5 hours during the day when I felt that I needed it. If you take it about every 4 hours during the day, and then take it before you go to sleep at night... sleep for about 7-8 hours, you'll be taking it five times a day.

You may find that you don't need it that often every day. I know I didn't need it that often every day. The days I go out shopping or to the doctor, I did, and still do increase it to every four hours during the day.

I'm glad you're working so hard to get off of the Prednisone before going on to the minocycline. You'll be very glad you did!

Hope you're feeling better!

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: *** Please Ask General Sarc Questions Here
Author: Martin Bardram (---.proxy.aol.com)
Date:   01-04-05 23:58

Julia / Meg

Thank you for your posts, im currently gaining much information together I am due to see my consultant next month so ill bring him some info on the marshall protocoll. I have only been in yorkshire 6 months so I may get more luck with him rather than my last consultant who didn't like the fact that I had done my own research on the net. He did however agree to a vit D test last year, but unfortunatley I wasn't up on the info and never recieved my results (figures) all he said was that it was on the high side of normall and that it proved nothing. But I may get further with my new consultant he seems very nice.

I checked out the UK link you gave me and will post there, thanks. I however notice that the link to sarcoiosis.me.uk dosn't work, has this site shut down. Anyway thanks for your help it's realy appriciated.
Martin
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-05-05 06:35

Martin,

Those D-metabolites test results could be very helpful in persuading your new doctor. Please try and get the actual numbers from your previous consultant.

Thanks,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 06:44

Hello, Martin,

I am not sure about the UK, but in the US patients can request copies of lab work or any other medical records even after they have left the care of a physician. You may still want to get a copy of the results of your vitamin D tests, for your own file.

The sarcoidosis.me.uk site was inactive for a long time, and I believe it has closed down.

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: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 06:52

Author: Marty J. (cache-rtc-ad08.proxy.aol.com)
Date: 01-05-05 06:34

Trevor or anyone, someone in my family had a petscan and I would like to privately talk to someone (Trevor) by e-mail about what is on it and if it can be confused with other diseases. Thankyou
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 07:03

Marty,

Welcome to SarcInfo.

It is our policy to discuss issues with the patient and their caregiver. I am sure you understand that the problems involved in attempting to do otherwise. If the patient would like to pose a question on the board, then we will try to answer it. If the patient's physician would like to phone Tervor with a question, he will take the phone call.

If you have a general question about how this technology (PET) works, we might be able to point you to some links on the internet for more information. Beyond that, please understand that all patients are reliant upon their own physican for management of their medical care.

Regards,
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: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 07:12

Author: Maree (c211-28-104-34.eburwd4.vic.optusnet.com.au)
Date: 01-05-05 01:09

I suffered a major left CVA eight years ago, at the age of 38, which has left me with chronic fatigue, muscle weakness and persistant inability to lose weight, amongst many other disabilities.
My brother has recently been diagnosed with sarcoid. I thought it was weird that many of his symptoms are similar to mine, except that he has a dry cough, I sometimes have a wet cough when I lie down at night.
Is it likely that my symptoms, until now all blamed on the stroke might have been caused by sarcoid instead. I have had blood tests and tested positive for Epstein Barr virus, and 1gM somethings as well as Cytomeglia Virus.
Many of my symptoms appear to be worse than those of other stroke victims that I have met, even those 10 or 15 years older than myself.
Thanks
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 07:44

Maree,

Welcome to SarcInfo.com. Cardiovascular accident (CVA) and stroke have been linked to sarcoidosis. It is possible that the underlying disease, sarcoidosis, could cause a CVA, and the patient would still suffer from symptoms of sarcoidosis even after recovery from the CVA. If you do have sarcoidosis, that could explain why your current symptoms are so troubling. Here is a related published article: Cerebral infarction, placoid epitheliopathy and sarcoidosis

I am sorry to hear that your brother has been diagnosed with sarcoidosis. There are a significant number of familial cases of sarcoidosis, which should spur your to investigate further. Begin by reading all the tutorials at the top of this page. That should provide you with enough information to ask your physician to order tests for your blood vitamin D metabolites. You should also read our brochure about the lessons learned in the NIH ACCESS study.

I believe you will find the information you are seeking here. Sarcoidosis has been a mystery for over 100 years, but now many of us are recovering using the Marshall Protocol - after years of pain, suffering and disability. Please let us know if you still have any question, after reading the information. We will try to answer as soon as 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: *** Please Ask General Sarc Questions Here
Author: Rick in Napa (---.dsl.pltn13.pacbell.net)
Date:   01-05-05 09:43

Lottie or anyone who knows . . .

I just finished my dentist appointment and the dentist ask what is in epinepherine that would be harmfull to us sarcoids?

Thanks again,

rick in Napa
 
 Re: *** Please Ask General Sarc Questions Here
Author: Sharon (---.kc.rr.com)
Date:   01-05-05 11:41

Friends,

Our area still does not have a support group. The net list a site that has not met for years. What is the best way to contact those who might be interested?

Sharon
 
 Re: *** Please Ask General Sarc Questions Here
Author: Joanne Bellerby (---.server.ntli.net)
Date:   01-05-05 12:56

This is for Martin in the UK, who is looking for a MP sympathetic doctor!!

Please email me for details of a doctor is use, who Dr Marshall knows well. I live in Middlesbrough - perhaps not too far from you - the doctor is based near Manchester, (not a GP).

joannebellerby@h..

Jo.

<<Moderator's Note: Thanks for the outreach effort, Jo. We have a built-in feature on this website that does not allow email addresses to be displayed. This is to protect the security and privacy of people participating in the forum. I will contact you using the email address the moderators have on file.
Belinda>>
 
 Re: *** Please Ask General Sarc Questions Here
Author: Rick in Napa (---.dsl.pltn13.pacbell.net)
Date:   01-05-05 15:49

Whew! Did I just get hit with some bad Herx . . .
I had to take 4 Trimox 500mg each prior to my dental appointment this morning. And, I did request Novicane - Plain . . . no epinepherine.
Came home and 30 minutes later got hit with some real tightening in my head throat and chest . . . I took a Benicar along with 4 Motrin and it's just now subsiding after 5 hours +/-. I guess all the meds with the Combo yesterday did'nt sit well.

Otherwise I have been feeling real good . . .

Rick in Napa
 
 Re: *** Please Ask General Sarc Questions Here
Author: Wytnez (---.austin.rr.com)
Date:   01-05-05 16:25

Will there be a section for people with sarc to post progress on this forum like the sister site? They have the benicar only section and then the section with benicar and antibiotics etc. I think that would be a great idea. Lottie, Belinda, Meg thoughts????

saj

P.S Noirs have arrived. I love them. The 40% are a lot lighter than the dark shades I have been wearing inside so it's a big difference. I am almost ready. Just waiting for the next step....Benicar......

sarc lungs 1,25D=32. D25=10 1/24/05 Beni q6hs, 2/11/05 Mino 25mg,3/4 mino 50mg, 3/24 mino 75mg ,4/15 mino 100mg, phase II 5/2,
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-05-05 16:35

Author: Tracey Langham (winn-cache-3.server.ntli.net)
Date: 01-05-05 11:14

Hi

i know that in a lot of patients who have recieved the BCG vaccination in the past, tuberculin skin testing can be negative in someone who has developed Sarcoidosis. Can anyone tell me, once treatment for the sarcoidosis has started will the skin test become positive again (reflecting previous BCG not TB) or is this affected premanently.

Reference any evidence or article would be appreciated.

Thanks
 
 Re: *** Please Ask General Sarc Questions Here
Author: Carol (---.proxy.aol.com)
Date:   01-05-05 21:00

Meg,
I was most upset to find out that the injection I recieved from my doctor was not for pain . But a steroid injection. After being off prednisone for 4 months. This did upset me. He told me that it would only stay in my system for 24 hours. I did ask him before the injection if it was prednisone and he said NO ! Will I suffer once again? Getting off Prednisone was a nightmare. If I can no longer trust my GP then it is time to find a new Doctor.

Cheers,
Carol

Dx: biopsy 98' Stage IV Sarcoid, Lungs and Lymph Nodes. D-test By Quest, Frozen 8/12/05 D-1,25=46 D-25=17 Avoiding D sun/light/food. NoIRS. Started Benicar 40mg q6h 8/19/05 off Predisone
 
 Re: *** Please Ask General Sarc Questions Here
Author: Pippit (---.asm.bellsouth.net)
Date:   01-05-05 21:14

Hi Rick in Napa,

Other antibiotics will often cause powerful herx (as you have just discovered). If the protocol meds are still in your system and then you take another antibiotic they can potentiate each other. You did the right thing by taking the Benicar. Make sure that you don't miss any doses and if you still feel bad from the herx and your doctor agrees you may want to take your doses a little closer together until things are stabilized again.

Hope this helps,

Pippit
 
 Re: *** Please Ask General Sarc Questions Here
Author: Martin Bardram (---.proxy.aol.com)
Date:   01-06-05 00:13

Jo

Thanks for your reply hopefully one of the moderators will passs my email address to you as it would be good to contact you regarding doctor near Manchester, im only 40mins away so could be good. I am still going to press my own consultant next month rearding MP and getting my vit D test results but it is good to know of any doctors willing to help.

Thanks Martin

Martin, check your email inbox. Belinda
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-06-05 00:40

Rick,

Patients with Sarcoidosis have problems with the Epinhephrine causing the local anesthetic to wear off more rapidly, requiring more local anesthetic depending on the work being done.

Among other things, it can also cause a fast, irregular, or pounding heartbeat, feeling faint, and/or increased sweating. I have a friend who reacts to it with headaches.

Lottie
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-06-05 01:00

Carol,

I am very sorry to hear that your doctor chose to use a steroid injection. Technically, it wasn't prednisone, but I suspect he understood what you were referring to.

It depends on the type of steroid injection he used, as to how long it will stay in your system. It shouldn't cause you the same problems that the Prednisone weaning did, although you may notice some of the same symptoms recurring. They shouldn't be anywhere near as bad as they were.

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: *** Please Ask General Sarc Questions Here
Author: Eurico de Sousa (---.sympatico.ca)
Date:   01-06-05 04:49

My wife is on Benicar 40mg q8h and is able to keep this schedule fairly well (roughly 6am, 2pm, 10pm). How can anyone realistically have a schedule of q6h on a continual basis? Any suggestions?

Thanks,

Eurico

Wife with Sarcoidosis - started MP Apr 2004 - Benicar 40mg q6h; Mino 100mg qod; started Phase II June 2004; avoiding Vitamin-D and sunlight
 
 Re: *** Please Ask General Sarc Questions Here
Author: Carol (---.proxy.aol.com)
Date:   01-06-05 14:32

Hi, Today was a let down. After going over my list of three doctors in Oklahoma and calling their offices. No luck !!! I will keep trying to find a doctor that is willing to try the Marshall Protocol. Untill then I will wear the NoIRs and avoid D Vitamin food and light. Is there anthing more I can do until I find a doctor?

Best, Carol

Dx: biopsy 98' Stage IV Sarcoid, Lungs and Lymph Nodes. D-test By Quest, Frozen 8/12/05 D-1,25=46 D-25=17 Avoiding D sun/light/food. NoIRS. Started Benicar 40mg q6h 8/19/05 off Predisone
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-06-05 18:51

Shirley,

There are no plans to duplicate the progress reports section on our sister site marshallprotocol.com. You are welcome to post your progress there.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-06-05 19:00

Sharon,

When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

In person support groups may be held in some of the larger metropolitan areas for patients with sarcoidosis. To my knowledge, none of them are specific to the Marshall Protocol. Since only the MP will help you recover your health, these groups tend to simply provide emotional support.

Many people who are using the MP need frequent technical support and that is provided on our two websites. If you want to contact someone on SarcInfo, let us know and we will send your email address to them. Some of the MP.com members list their geographical location and you can contant them via private message or email.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Kas (---.cpe.net.cable.r)
Date:   01-06-05 19:29

Hi Meg, Trevor and the Moderators,



I have been off the mino for two months now due to a few problems with unbearable yeast, and was just fine in the interim, with my usual high energy levels and only a few minor aches and pains.

The past two weeks, however, have seen a return of the most awful pain in my lower legs, ankles and feet. It's a burning, aching feeling constantly, and it drives me crazy. I am sure this is my sarc playing up.


I plan on re- starting the MP after my current challenging job assignment ends , which is at the end of April. I would start earlier, but cannot risk taking Benicar and suffering as I did on it during my first short attempt in June of last year whilst I am working and need to be well and focused. I was wondering whether it may be worth my while to first take about three months of low dose mino again to reduce my bacterial load? I am willing to risk the yeast problem and take the Candex ( if it is indeed permitted) on the mino alone. At least I will then feel I am doing something to help these aching lower legs!


Meantime, is it OK to take Advil for my pain? I do not want to take Celebrex or anything of that ilk, as despite the concerns about the drugs, they do elevate my liver enzymes, which, when last tested in September, were just slightly above normal and much better than they had been in a long time. LFT's in December were in the normal range. D levels are being tested again in early February to give me a base- line. BP is still low at around 95/50, but energy levels continue to be as high as ever ( weird, eh?!)


I continue to wear my Noirs and avoid as much sunlight as I possibly can and am really good about not eating D foods. My pulm, she of little faith, will see me again in May and I will also have a chest CT then. If there is any deterioration, she will agree to follow me on the MP. Baby steps, I know, but some progress from a woman who formerly told me she was not even interested in it at all. My family dr is still happy for me to be on the MP when I am ready to re- start.

My best wishes to all of you for a healthy and sarc- less New Year.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-06-05 20:25

Tracey,

I don't think anyone knows the answer to your question about continued cutaneous anergy. I get a TB tine test annually as part of my job requirements. I've been on the MP for two years and my TB test still demontrates cutaneous anergy as evidenced by absolutely no skin reaction when a normal but negative person would have a faint redness. This is not a problem though because no one seems to realize that this means the test is not accurate in people with sarcoidosis. So I'm cleared to continue working.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-06-05 22:52

Eurico,

Many people who take Benicar "every six hours" actually do it on a modified schedule because they want to sleep more than six hours at night. A typical modification would be to take it at noon, 6pm, 11pm and 7am. As long as no one interval exceeds eight hours, the inflammatory blockade will not be lost.

Some very symptomatic patients find that they feel best taking 20mg of Benicar every three hours during the day and then 40mg at bedtime with the next dose six hours later. A typical schedule would be 20mg at 6am, 9am, noon, 3pm, 6pm, 9pm and then 40mg at midnight. That would be equivalent to 40mg every six hours or 160mg in a 24 hour period.

Some patients take Benicar every four hours on the days that they must go outside. They time the dose for one hour before the increased sun/lights exposure to help avoid symptoms from a sun/lights flare.

I hope that these options will help Nicole keep her 1,25-D down and not interrupt her lifestyle any more than is necessary.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: JANET REBBECK (---.chariot.net.au)
Date:   01-07-05 02:45

Hello everyone

I am just about to start Phase 2, but have struck a problem with Zithromax. In Australia, it is only available in 500 mg & 600 mg tablets, and oral suspension powder in bottles. My specialist has given me a script for the powder suggesting it would be easier to use due to the low dosage start.

Zithromax powder supplied by the pharmacist has 200mg/ 5 mL 15 mL printed on the box. He said to add 9 mL of water to bottle and shake; then use the amount required and discard the remaining contents, if not used within 10 days.

My question is - is it possible to get a teaspoon or similar measurement equivalent to 31 mg of Z, if I use this oral solution? Also, do you think it may be possible to use the powder without adding water? Or would it much better to stick to the 500 mg tablets?


Your thoughts would be greatly appreciated.

Many thanks

Janet

sarcoidosis - lungs, skin, left breast, left eye; skin first DX 1990; 07/04 1,25-D 44.2 and 25-D 13.6; started MP Phase 1 08/04; 12/04 1,25-D 29.23 and 25-D 8.4
 
 Re: *** Please Ask General Sarc Questions Here
Author: Sandi (---.kodak.com)
Date:   01-07-05 09:19

I've posted before and again thank- god for this web site...

I was diagnosed with Sarcoid about 3 years ago through a lymph node removal.. For the most part I do not have a lot of symptoms. About 6 months ago I started to have a dry cough and shortness of breathe when climbing stairs. My chest x-ray shows cloudiness in the right upper lobe. I had a bronosocopy a few weeks ago and it came back as a MOLD.. I now have to have a open lung biopsy to see what kind of mold it is, so they can treat it. My doctor's says the drugs to treat this are very toxic...

What I'm looking for, is this common with Sarcoid patients!

Thanks
 
 Re: *** Please Ask General Sarc Questions Here
Author: Tracey Langham (---.server.ntli.net)
Date:   01-07-05 10:40

Thanks Meg

Came across your site when doing a search to try and find the answer from an interest point of view and thought it was worth a try.

I am a TB/Respiratory nurse in the Uk and was asked to screen someone prior to commencing nursing to clear them from a TB point of view. She had sarcoidosis many years ago is no longer on any treatment and has not had any problems with the sarcoidosis for many years. She has had a BCG (had positive mantoux in keeping with this) then had a negative Mantoux test when the sarcoidosis was diagnosed.

i have been reading some literature that says cutaneous anergy can change. Anyway i have done a chest x-ray that showed no signs of TB and have cleared her to work.

Thanks again.

Tracey

P.s Very interesting site, will be reading more about MP. Will show to the Respiratory Consultants that i work with.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-07-05 14:04

Sandi,

Fungi include a large group of organisms including mold, mushrooms and puffballs. Fungi are in the soil and in the air we breath. Most people, however, do not get lung infections as a result. Fungal infections usually occur in people whose immune systems are weakened or compromised for some reason. You could always ask for a second opinion if you are not sure of this diagnosis, because biopsy through open lung is usually used only after all other methods have failed.

Corticosteroid-treated sarcoidosis patients can end up with a fungal infection such as pulmonary aspergillosis (aspergilloma), since corticoteroids will shut down the body's abilibity to fight off invaders, including fungus. The cavitary lung changes that can be wrought by sarcoidosis can make these patients more susceptible. Actually, any disease that can cause lung cavities can leave a person susceptible to aspergilloma, but the corticosteroid-treated sarcoidosis patients have an enhanced risk for fungal colonization.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-07-05 19:48

Hi Kas,

Welcome back. I'm sorry to hear that you're feeing worse but that does seem to be the course of untreated sarcoidosis. I'm glad you are still taking precautions to avoid sun/lights as much as you can. I know that you are still employed so that makes it quite difficult and may greatly reduce your chances of success with the Marshall Protocol.

Some people take minocycline every other day without Benicar but we do not encourage this. Taking mino alone for too long a period runs the risk of allowing bacteria not susceptible to mino to repopulate the newly cleared tissues. We like to see people add a second antibiotic (phase two) within five months. And, of course, Benicar is that essential medication to help the immune system see the bacteria. The immune system is the 'big gun' in this process, not the antibiotics.

Advil is fine to take for pain.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-07-05 20:17

Janet,

If you can figure out how much in mg the entire packet of powder equals, you should be able to figure out what percentage would equal 31mg. Then you can divide the powder into that portion and just mix up that much in a small amount of liquid. If this is too difficult for you, perhaps your pharmacist can help you figure out how to use it without wasting it, if cost is an issue.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-07-05 21:18

Sandi,

An open lung biopsy is a very invasive procedure. It can result in serious adverse events such as permanent nerve damage with chronic pain.

Even if your mold diagnosis is correct, Dr. Marshall believes that the immune will take care of secondary infections when the Marshall Protocol is used to treat your primary infection-intracellular, pleomorphic bacteria-that are triggering your sarcoidosis.

The MP meds are safe. I suggest you ask your doctor to let you try the Marshall Protocol to treat your sarcoidosis first to see if it accomplishes resolution of your pulmonary symptoms without the toxic meds he mentioned.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: sue (---.glst3401.nj.comcast.net)
Date:   01-08-05 05:34

Does anyone have any experience or knowledge about a chest xray showing density in the lungs?
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-08-05 06:18

sue,

I don't know if a chest xray shows density. But you don't want to wait until your lungs are damaged before you do something about systemic symptoms.

In your last post you said you'd had your D-metabolites tested. Did you find those actual numbers so we can help you interpret them correctly? Please include also:
The date the blood was drawn.
What lab did the tests.
If the 1,25-D sample was frozen for shipment.
If you were taking Vitamin D supplements, including fish oil.

Also, you can do a kind of therapeutic probe just by avoiding all sources of Vitamin D to see if it makes you feel a little better. This could give you a clue if the Marshall Protocol would help you.

When you have a minute, please add a signature line. This pertinent data, which will appear each time you post, greatly helps the moderators to answer your questions.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Please Ask General Sarc Questions Here
Author: Kas (---.cpe.net.cable.r)
Date:   01-08-05 10:11

Thanks for the reply, Meg.

My plan is to start the MP again within the next four to five months(when I am on vacation in the summer months).

Unfortunately, I have to work to pay the bills, so right now, I have no option.


Other than the leg problem, I feel pretty well, thankfully. I just wondered whether perhaps a three month mino course may kill off some bacteria in the meantime. It did help my legs before. I am concerned that too much Advil or asprin might be harmful to my liver.
 
 Re: *** Please Ask General Sarc Questions Here
Author: smc (---.glst3401.nj.comcast.net)
Date:   01-08-05 11:57

To give you a little more info, my vit d ratio was done at Quest both times and it was frozen. (I even asked the person drawing the blood who explained that the computer "red flags" it to tell her to freeze it.) The results were as follows:

on 8/26/04 1,25 dihydroxy 36pg/ml and 25 hydroxy 26 ng/ml

on 10/15/04 1,25 dihydroxy 50pg/ml and 25 hydroxy 33 ng/ml

on 11/27/04 tot cholesterol 208 mg/dl
tri 150 mg/dl
hdl 43
vldl 30
LDL 135 mg/dl


I have eliminated all vit d from my diet that I know of. no more cereal or milk and i watch labels for anything fortified with vit d. I don't eat any fish nor do i take any vitamins. I did buy the noir glasses and I try to avoid sunlight.
My symptoms have relented a bit, but they sometimes do.

Regarding the chest xray, mine did show that I have density in areas of my left lung, but I don't know what that indicates if anything.

Thanks for your input.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-08-05 13:39

Author: Grace (host-216-78-50-111.ath.bellsouth.net)
Date: 01-08-05 09:04

I have been diagnosed with sarcoidosis about 2 years ago and I was on a steroid for about 1 year. I was told that I was in remission and now I have been in the hospital. They have done a bone marrow bioposy, skin bioposies and a lot of blood work. I have been having to receive the neupogen shot numerous times and now they are trying to get the drug remicade approved by my insurance. I am totally confused. All of the bioposies showed the sarcoidosis present. Is there something that I need to ask about my condition because I am very confused and concerned since I have children still at home. Please let me know your thoughts.
Thank-you,
Grace Hulsey
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-08-05 14:01

sue/smc,

This moderator, who is pretty easily confused, would appreciate it if you would post under one name and add a signature line. If I remember correctly, you are not yet on any MP meds and are not taking prednisone. It would be helpful to know what other meds and/or supplements you are taking. Hundreds of people post here and we do not have the luxury of a medical record to refer to. We want to help but need to make sure any suggestions we give are based on an accurate data base.

We know that 1,25-D fluctuates rapidly. Your initial level was not terribly high but it was a clear indication of a dominant Th1 immune system response. Taking your symptoms into consideration, this would have been enough evidence for a therapeutic probe with Benicar and then minocycline.

In October, your 1,25-D was unequivocably high. This may be within the lab range normal but those ranges are skewed by the presence of undiagnosed patients with Th1 inflammation. 50 pg/ml is higher than the maximum recommended value (45 pg/ml) listed in the Merck Manual. 98% of the population would be expected to have a lower number.

At the same time your 25 D was higher than the value of six weeks earlier. 25-D is influenced by ingested Vitamin D only and changes very slowly since it is stored in fatty tissue. This tells me that you need to be even more cautious about all sources of ingested Vitamin D. That number needs to be much lower in order to deprive your inflammed tissues of this precursor that is needed to produced 1,25-D.

I believe that you have yet to convince a doctor that you have sarcoidosis or any Th1 inflammation. I hope this information helps. Your clinical signs warrant a presumed Th1 inflammation diagnosis and a therapeutic probe with the MP. If your doctor is willing to order your D-metabolites, hopefully, s/he will accept our expert interpretation and order the MP meds.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-08-05 14:24

Hi Grace,

Welcome to Sarcinfo. I'm sorry you are still ill. It sounds like you have been a victim of doctors who do not understand what causes sarcoidosis or how to treat it correctly.

The standard treatment, prednisone, will treat your symptoms only. But, by ruthlessly suppressing the immune system, prednisone allows the underlying cause, intracellular bacteria, to multiply. Consequently, patients eventually relapse, as you did. Please read the brochure (at the top of this page) about the NIH study. In this largest ever study of sarcoidosis patients, no one went into remission during the two year length of the study regardless of whether they were treated with prednisone or not.

Neupogen is a white cell stimulant. Sarcoidosis is a lymphopenic disease but the use of Neupogen with not help you recover. Remicade (inflixamab) is an immunosuppressant (like prednisone). It is ridiculously expensive, has toxic side effects, does not cure sarcoidosis and will put you at risk for other infections. In stark contrast, the MP meds are relatively cheap, safe and effective.

Pleomorphic bacteria which live within the very cells of the immune system that are supposed to kill them, are what is causing your symptoms. This causes the production of so much hormone D that the kidneys lose control and hypervitaminosis symptoms are the result.

Since your doctors don't seem to know this despite our many efforts over the past few years to inform the sarcoidosis 'experts', you will need to use our websites to educate yourself. Then you will need to educate your doctor or find one who is willing to order the Marshall Protocol. It won't be easy but it is the only way you will recover your health.

I know this is confusing for someone who doesn't have a medical background and may even be suffering from brain fog. It doesn't seem fair but we are eager to help you understand.

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: *** Please Ask General Sarc Questions Here
Author: sue (---.glst3401.nj.comcast.net)
Date:   01-08-05 15:25

Meg,
Your explanations help me to better understand the information I've read. I really hope my dr. is receptive to starting the mp. I've made an attempt at creating a signature. Thanks for your help.

symptomatic but no diagnosis, not yet on MP and not taking prednisone. taking 20mg benicar/day for hypertension, hctz, advair inhaler. no other meds and/or supplements. 9/04 1,25-D 36 and 25-D 26, 10/04 1,25-D 50 and 25-D 33, 1/05 1,25-D 44, 25-D 10
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-08-05 19:23

sue,

Good luck with your doctor. If he turns out not to be supportive, let us know if you'd like a list of doctors who might help.

Thanks a bunch for adding your signature line.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.ne)
Date:   01-09-05 08:55

I wrote you before about my friend but didn't get facts straight, so here we go again: She has fibromyalgia, and inherited high tryglycerides and choloesterol. She had to go off Lipitor due to very high muscle pain. Her tryg., went to over 1000. Choloesterol was 328. She has already had pancreatitis twice and is very reluctant to go off any meds. She now has diabetes and is taking glucophase for it. Her heart's main arterey collapses with excertion (heart spasams) She is on Diltiazem. She is not on any MP but I am trying to convince her to take the blood tests and possibly do MP. They have now placed her on Niaspan for her tryg and she is still on Lopid. If she were to need MP would she be able to eventually come off those meds and be cured. Please remember she has inherited this nightmare. Answers please? Bonita
 
 Re: *** Please Ask General Sarc Questions Here
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   01-09-05 16:58

In my last post, I do not know if you can make heads or tails of what I am asking? Will the inherited problems and/or the heart problembe eliminated by MP or would she still have trig, chol, and heart problems? Thanks for your thoughts? Bonita
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-09-05 17:33

Author: Kathie (h32.218.39.162.ip.alltel.net)
Date: 01-09-05 17:15

> Where can I find out about the stages and the effect's I'm going through with stage 4.? Thank you, Kathie ( rosequeen001)
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-09-05 17:45

Bonita,

Your friend sounds very ill. Much of her problem could be Th1 inflammation. Some damage caused by inflammation is permanent so her heart condition may not improve. Th1 inflammation often causes elevated triglycerides and cholesterol. Pancreatitis is an inflammatory process. Diabetes and fibromyalgia are Th1 inflammatory diseases. There is a strong genetic component to the Th1 inflammatory disease.

You said that your friend "is very reluctant to go off any meds." The Marshall Protocol is not for the faint of heart. And, since it is relatively inknown by the medical establishment, your friend would have to be willing to educate herself and then convince her doctor. She could ask to have her D-metabolites tested but if she is unwilling or unable to do the research required of MPers, then she will not be successful. This MP.com FAQ, How do I know if I have the 'right stuff' to be successful with the Marshall Protocol? is a good overview of this issue.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-09-05 17:58

Hi Kathie,

Welcome to SarcInfo. I'm sorry that you are so ill with sarcoidosis.

Dr. Marc Judson, MD (pulmonoligist) had this to say about staging sarcoidosis:

"It is important to make several points about the staging system. First, is only a chest X-ray staging system. It tells you nothing about involvement of sarcoidosis outside of the lungs. Second, it is in general, a poor staging system. Most sarcoidosis experts do not use it because it's so poor. It has a few major problems. The first is that it's inaccurate. When you do much better views of the lungs by chest CT scans, you find out that the actual stage is different than what appears on chest X-ray. The next problem with the staging system is that it does not predicit the need for therapy, the level of disability, or the prognosis IN AN INDIVIDAL PATIENT with any good degree of accuracy. That is, if you had 100 patients with stage 1 disease and 100 with stage 2, the stage 1 would have better pulmonary function, less pulmonary symptoms, and a better prognosis. BUT many in the stage 2 group would have better pulmonary function, less pulmonary symptoms, and a better prognosis than in the stage 1 group...you can't tell what will happen to one specific patient. Probably the most useful part about the staging system is that patients with stage 4 generally have poor pulmonary function and have the worst prognosis. But I don't put too much weight on this staging system...it is antiquated and doesn't help me much at all." 14 August 2003

Dr. Marshall has successfully recovered from stage IV sarcoidosis with extensive systemic symptoms by using the protocol that he developed. There are over 300 sarcoidosis patients currently on the MP with 98% responding, improving or recovered.

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: *** Please Ask General Sarc Questions Here
Author: Alan Barker (193.34.231.---)
Date:   01-10-05 02:39

Hello,

I'm on phase 2 - I've been on it 7 weeks.
My breathing isn'nt getting any easier but I'm noticed a marked increase in anxiety.

My question : Is increased anxiety a sign of herxheimer reaction ?

It's the first time I've felt like this - I've been on the MP for about 8 - 9 months now.

thanks,

Alan.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Alan Barker (193.34.231.---)
Date:   01-10-05 03:17

hello again,

Whilst having a bit of idle time I came across this "Nebulized Glutathione" website. http://www.naturally.ca/glutathion.html .

My question is this : can glutathion treatment help sarcoidorians ??
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 06:29

Alan,

Glutathione is sometimes decreased due to Th1 inflammation but this is merely an effect of the disease. There is no evidence that increasing glutathione affects the course of the sarcoidosis or an other Th1 inflammatory disease.

The only way to recover from your sarcoidosis is to treat the underlying cause which is intracellular, pleomorphic bacteria. And the only way to do that is with the Marshall Protocol.

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: *** Please Ask General Sarc Questions Here
Author: Di (---.server.ntli.net)
Date:   01-10-05 07:19

Hi,

I recently had a bone density and related blood tests. These showed, fortunately, that my bone density is good for my age but that my vitamin D is low causing a related reading to be high. I didn't catch the name of this, but think it has something to do with the pituitary gland The specialist wanted me to take a D supplement as apparently the reading was low enough to effect bone formation.

I have been carefully avoiding vitamin D in my diet over the last four years since I was diagnosed with sarc, but should I agree to take it, given these results?

Di
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-10-05 07:24

Alan,

Anxiety and irritability can be due to Herxheimer, so I would deal with it as any other Herx symptom. I didn't work with these neuro symptoms until Phase two "kicked in."

Let your family and best friends know what is likely causing your difficulty and take it easy.

Best wishes,
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: *** Please Ask General Sarc Questions Here
Author: sue (---.glst3401.nj.comcast.net)
Date:   01-10-05 08:59

Meg,

I wanted to post my most recent vit d results. They were done on Jan. 3 at quest and are as follows:


25-D 10
1,25 D 44

I've asked the dr.'s office to move my appointment up so that I can see him asap and ask to begin the mp. Just wondering if my most recent levels tell us anything more than we already know? Thanks for you help.

symptomatic but no diagnosis, not yet on MP and not taking prednisone. taking 20mg benicar/day for hypertension, hctz, advair inhaler. no other meds and/or supplements. 9/04 1,25-D 36 and 25-D 26, 10/04 1,25-D 50 and 25-D 33, 1/05 1,25-D 44, 25-D 10
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 14:11

Di,

We can't answer your question accurately untill we know the exact numbers of both D-metabolites and the other test that the low D is supposedly affecting. If the doctor only tested 25-D, you will need to get your 1,25-D tested also.

Please call your clinic and ask the procedure for obtaining a written copy of these lab results. Then post them here at SarcInfo. If you have not yet recovered from sarcoidosis, then Vitamin D supplementation is contraindicated.

When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 16:56

sue,

Your most recent test results are as clear-cut for Th1 inflammation as any that I've seen. If doc doesn't understand their significance, please ask him to call Trevor Marshall.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 17:04

Author: Louis (dsl-80-41-118-23.access.uk.tiscali.com)
Date: 01-10-05 09:30

Hi My Mum has got sarc and is having trouble breathing the doctors have given her steroids to help but i'm really worried any infomation to help me calm myself down or should i be worried
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 17:15

Hi Louis,

Welcome to SarcInfo. I've moved your message from the archived thread it was posted in to this current general questions thread. Please change your registration so that the moderators can see your email address. I'd like to send you some information on how to navigate SarcInfo.com.

I'm sorry your Mum is ill. The doctors are prescribing the old standard treatment, prednisone, but it is the wrong medication. Prednisone ruthlessly suppresses the immune system and allows the intracellular bacteria that trigger sarcoidosis to multiply. There are many links at the bottom of this page with information about steriods and this thread will also help you understand why your Mum should wean off prednisone as soon as possible.

Sarcoidosis is treated correctly with the new, safe Marshall Protocol. Over 300 patients are being helped with this novel cutting edge treatment by their local physicians and recovering their health.

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: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-10-05 17:44

Hi, I was diagnosed with sarc 3 months ago. My main complaint is the unbearable fatigue.
Does anyone know of any changes in my diet or lifestyle that can ease this?
I drink a lot of milk, and from the little I have read here (first time on the site) too much vitamin D is bad.
Anything else I could do?

Thanks

Freddie
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 17:56

Hi Freddie,

Welcome to SarcInfo. Sarcoidosis causes Vitamin D metabolism to be dysregulated. To help your recovery, it is essential that you avoid all food sources of Vitamin D and discontinue all Vitamin D supplements, including fish oil.

You also need to protect yourself from THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS.

You can find out What is the Marshall Protocol? is this forum. The MP is the only effective treatment plan. And, unlike the standard prednisone, it is safe. Over 300 patients are recovering from sarcoidosis with the help of their local doctors and the MP.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-10-05 20:06

Thank you for your response. Again, I have only been diagnosed since November 2004, my chest xrays showed ok, but I notice I have been short of breath. I get winded very easily.
Should I get xray'ed again, or is this normal?
Also my eyelids and underneath my eyes get red or dark, is this normal?
I had my eyes checked in June 2004 and they came back ok, but this was b4 the sarc diagnosis.
I am also very pale too.

Thank you

Freddie
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-10-05 20:39

Freddie,

Your official diagnosis may be only a few months old but I'd be willing to bet that you have had symptoms (like most of us) for years. Sarcoidosis is a systemic disease that can affect any organ in your body. A clear chest xray does not indicate remission if you still have symptoms like shortness of breath.

A repeat chest xray will not change the course of your disease. You need to get your D-metabolites tested. Then post the actual numbers on either website for an accurate interpretation.

In the meantime, you may find that avoiding all sources of Vitamin D makes you feel a bit better. This will suggest to your doctor that you are on the right track with the Marshall Protocol.

There is a lot to learn. Give yourself time to read the info on both websites and absorb everything. Feel free to ask about anything you don't understand but we appreciate it if you do your 'homework' first because we've already answered most questions. Using the search feature will usually lead you to many previous discussions of your concerns.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lottie (---.proxy.aol.com)
Date:   01-10-05 21:07

Freddie,

I have never had an "abnormal" chest x-ray, before or after my biopsy proven diagnosis of Sarcoidosis. The lymph nodes around my heart showed up as enlarged when I had a CT scan with dye. They did that test because they thought I may have had an embolism in my lungs, following gallbladder surgery.

Shortness of breath was one of the first symptoms that caught my attention that something was wrong.

Keep in mind that Sarcoidosis is a systemic disease, and that it can affect any part of your body, including lungs and heart. Anemia is also not unusual at all with Sarcoidosis. These can account for the shortness of breath, and perhaps some of your paleness.

My eyelids, and beneath my eyes will turn red on occasion as well, and my eye exams have been normal so far. It would be a good idea to have your eyes checked again now that you have a diagnosis of Sarcoidosis though, and be sure that your doctor knows that you have Sarcoidosis. This exam should be done by an Opthamologist, an MD.

Please take what Meg wrote about avoiding Vitamin D in all foods, and lights. It is very important!!! You will begin to notice a difference in your fatigue. Just doing that will help a lot.

At this point in your illness, it isn't a matter of too much vitamin D... it's a matter of ANY vitamin D can give you problems. It helps to fuel the inflammation that is going on in your body.

Be sure that you don't take any Prednisone, or other steroids, as they shut down the immune system and allow the bacteria that are the cause your illness to flourish.

I hope that your doctor will assist you in proceding with the MP. That will allow you to return to good health.

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: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-10-05 21:57

Thank you so much Lottie. This is the first day that I have gone onto this site and I feel that I have learned more from you guys than from anyone else. My first "symptom" that made me go to the hospital was huge inflammation of both my ankles. (erythema nodosum). I couldn't even walk. It was so sore and, basically, it looked like someone beat me with a stick on my ankles. I was covered in these red/purple welts. (non-blanchable purpura I think it was called)
I went to a specialist at the Internal Medicine Unit at the local hospital, and once the specialist looked at me he said "sarcoidosis". He said he'd have to wait till he got the results of my blood work etc.. but he was positive.
I only went on Prednisone for 5 days ..50mg once a day..only took three of them because the ankle probs went away and frankly, prednisone can screw you up pretty good. I have never been so messed in my life.
Again thank you for the advice. I appreciate it sooo much.

Freddie
 
 Re: *** Please Ask General Sarc Questions Here
Author: Rowdy (---.tnt2.ij.net)
Date:   01-11-05 05:43

Freddie,

You're pretty much describing my experiences with sarc. I was diagnosed in October 2003 after a bout of erythema nodosum. Unfortunately, I was on pred for 7 months (a miserable 7 months). It wasn't until about three months after the EN that I began noticing breathing issues. I don't appear to do a good job of describing my symptoms since all I hear is that I'm doing better. I describe them as a feeling low in my throat/chest like I'm sucking air through a cigarette filter and that causes me to be aware/conscious of every breath. The doc tells me that the x-ray and CT show that things have cleared up, no more adenopathy, and that if I'm feeling anything it is a "sensitivity" not sarc. I also am out of breath climbing a flight of stairs or immediately during any form of exertion. Since I don't wheeze or gurgle and I recover soon after ending the exertion it's ignored as a symptom. It wasn't this way a year and a half ago.

I have not been able to get any of my drs. to really discuss the MP either because they say I'm already getting better or they don't accept my other symptoms/problems as being sarc related. My GP was quick to say "I don't treat sarc".

Since my diagnosis, I've been diagnosed with sleep apnea, carpel tunnel, bone spurs in both ankles (probably numerous other areas), sarc related arthritis, repeated ear infections, and elevated liver enzymes just to name a few. I'm having problems with the sleep apnea because of my "breathing sensitivity". I have a hard time falling asleep with my consciousness of every breathe while on the CPAP and then can't fall back to sleep when I'm awakened by numerous other causes, especially various aches and pains. I sleep with braces on both wrists for the carpel tunnel and I've tried numerous drugs for pain caused by that, the spurs, and the arthritis without success. I finally gave up trying to find something. I deal with the pain and take Ibuprofen for acute symptoms. At one point, I was on 7 prescription meds each morning. All of this happening to a guy who never scheduled physicals unless required and generally did not step in a doctors office more than once every three years.

I still have hope that one of my drs. will eventually admit that they are wrong and it's time to try something different. My pulmo may be the one most open to this but he also sees his part of the treatment as getting better. In a sick sort of way, I cheer the additional diagnoses as more ammunition that it's time to try something different.

Each case of sarc is different but I have to disagree with the statement that I heard with my initial diagnosis, "sarc that "begins" with EN is no big deal".

Steve

Dx: sarcoidosis 2003, lung, joint pain, sleep apnea, salivary gland stones; on pred Oct 2003 to Apr 2004; not on MP; Ds not tested
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 06:40

Rowdy,

I think you have a more accurate assessment of your sarcoidosis than your doctors. I hope you won't wait for one of them to 'see the light'. Let us know if you'd like a list of doctors who might be more supportive so you can really recover.

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: *** Please Ask General Sarc Questions Here
Author: Tom Rogers (---.nys.biz.rr.com)
Date:   01-11-05 10:24

What are the abbreviations on a Pulmonary Function Test (PFT) print out that we should concern ourselves with? (Also, what should the values be for GOOD lung function?)

TIA,

-Tom
 
 Re: *** Please Ask General Sarc Questions Here
Author: norman wetmore (---.client.dsl.net)
Date:   01-11-05 10:51

hello Trevor and admin

It's good to be back. I have not been here in a while so sorry if I duplicate a concern or question. Just curious..did anyone comment on the football player Reggie White's death here? Very interesting (but sad)

I have been away for several months now..mostly due to SEVERE pain in my shoulder and back. I finally had some shoulder surgery where doc shaved what appeared to be, almost an inch of bone from by ball and socket and also some towards the top of the shoulder where one would get an impingement syndrome. I am recovering now and it's very painful - still taking 3-4 vicadin a day.

I really believe that Trevor's approach works. Unfortunately I felt the need to stop since the benicar and the vicadin were knocking me for a loop !!! I am not sure if it was caused by the vicadin in combination with the benicar or not (maybe you guys there can help me with this), but my bp went down to something like 70/45 or so and i felt like I was going to die. It was like that for several days and it scared me so much I felt I had to stop. I did notice however that after stopping the benicar my bp seemed to stay normal for a couple of months (interesting !). Several months later, my voice has begun to get raspier once again, my bp has gone back to it's previous elevated condition (about 136-140 / 85-95) and my skin lesion which had previously shrunk a bit looks even bigger than it previously had - to the point where it seems like I can see the outline of a new area it wants to spread to !!!! This all makes me believe that the protocol works (for the non believers).

Most of the time while on the MP, my bp seemed to be around 90-100/60 (sort of stable), but sometimes it would dip even lower, which always concerned me.


I know you will not like me for asking this, but I still feel the need to ask. I have had a bad episode with the herx, and I understand that you can watch this and try and prevent it, but the thing I have the most problem with is the fairly constant battle with the low bp. Is there ANY evidence to suggest that one might be able to take a bit less of this drug every day...like 20 - 30 mg anyway? I just get SOOOO nervous when my bp goes down to the 90/60 range - or lower. It also knocks me for a loop where i can't do anything with my family (esp playing with the kids). That is really my only complain ( if I could use this word). Lastly my doc has expressed concerns about this and wonders sometimes if I should continue. What can you tell us (doc and I) to comfort us ?

Lastly, I know you guys are doing GREAT WORK , so please don't take the above comment the wrong way. I'm glad to be back and feel a DEFINITE need to start the MP again in a few weeks. I am just waiting for my shoulder to heal a bit more and have a bit less pain so I can take less vicadin.

Again...thank you all for your wonderful work - keep it up !!!!!

Sincerely,
Norman W.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lee (---.ma.seidata.com)
Date:   01-11-05 11:53

Hey Guys....I have new hope as have 2 new docs to see this month!
I just happened to think of one minor thing.....that could be major and after reading Norman's post I will add it.
I have hypothyroidism......and very low blood pressure which docs say is part of that condition.
I am taking mobic daily along with my armour thyroid. I am practically Vit D free now too.....and what a sense of well-being I have now that culprit has been eliminated!!!
My husband with possible sarc has high blood pressure.....I have had 3 docs now confirm my sarc.....but my pressure reads 90/50 on a GOOD day.
I am hoping to get on the MP really soon.....but just before posting I got a reading of 80/50......arrrgggghhhhhh
Is there ANY safe or natural way to up the blood pressure? I need to get this up.
Thanks!!!
 
 Re: *** Please Ask General Sarc Questions Here
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   01-11-05 12:44

Is there a bone sarc? Just to lean my cheek on my hand, the bones in my face hurt. thanks Bonita
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 14:50

Tom,

Here is a link that may answer your questions.

Trevor has said, "The biggest improvement in lung function comes about as your gas transfer factor (DLco) starts to return to normal.
http://www.gpnotebook.co.uk/cache/-1328545787.htm
This pulmonary function parameter often drops to 30% in interstitial inflammatory diseases, and it will recover quite quickly, especially once you start kill the aerobic bacteria in your lungs. Stage 2 may well do that for you.

The DLCO (diffusing lung capacity) test is usually given at the same time that other pulmonary function tests are given. It is not a self test - it's usually administered by a respiratory therapist in a facility such as a hospital, by a doctor's order.

You inhale a single breath of a known quantity of carbon monoxide, then hold your breath, then exhale. This is all done with special equipment so the exhaled breath can be analyzed to determine the amount of carbon monoxide that was absorbed in the single breath. The results indicate how well oxygen passes from the lung's "air sacs" across to the blood."

Here is a Medline link and Medline illustration.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Paula Bakley (---.proxy.aol.com)
Date:   01-11-05 15:20

Dear Meg and or Lottie, Belinda;
I am on my 3rd ten day course of phase 2. The first two rounds I stayed on the first dose. I am into the third day of the next dosage. So far so good.A little discomfort but tolerable feel confident I made the right decision to go forwad. Will be seeing my primary tomorow. Is thee anything I need to ask? He wants me to have an Endoscopy as I do have an ulcer that is acting up, but I have been under some emotional stress during these holidays, and the loss of a dear patient and friend. Would Nexum or Carafate interfere with the MP.
Wish me luck.
Paula

Neuorosarc 1997, sinus granulomas 1994. On Paxil, Klonopin, Levoxyl, Demerol, Pain, Phenergan, nausea, Porphyria, Migraines, Kidney stone, Osteoporosis. MP 7/04 Benicar160mg, Min100mg qod. BW 11/9BUN 30 Trigl 353, Alk Phos.147 phase2 11/5 Vit D 25Hyd 19
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-11-05 15:22

Bonita,

Yes, we know what you are talking about. It's not unusual for the sarcoid inflammation to result in pain that you can feel in the bone, just from pressure. A few years ago, I had pain in my fingers from grasping a cup. I shrank from handshakes, because even gentle handshakes were painful. The first phase of the Marshall Protocol got me past the "pain of lying down." I literally used to dread going to bed at night, because lying in bed was painful. Many people report they sleep in a comfy recliner until they get to recovery.

There is bone sarcoidosis, where doctors find evidence of sarcoidosis in bone, using imaging. This report says that osseous involvement is not uncommon in sarcoidosis, and may be overlooked. The facial bones can have have sarcoid lesions, but this is rare.

What I can tell you is that all that pain I used to feel in my bones from any sort of pressure is gone now, after more than two years on the Marshall Protocol.

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: *** Please Ask General Sarc Questions Here
Author: Yvonne (---.avsia.com)
Date:   01-11-05 17:18

Hi to all. I haven't posted for a while but wanted to update you on what has been happening. I started the MP in August and was doing pretty good until I tried to ramp up too quickly. Dropped back down but had to get off for knee surgery. Stayed off 3 weeks and went back to the start with the mino and benicar. As soon as I started everything back, my knee began hurting really bad again and my eyes started acting up. I now have sarcoid in my eyes again. Meg or someone had suggested I get off the program once more and see if my knee got better and my eyes got better. It has been about a month. My knee is still hurting (not quite as bad) and my eyes have gotten worse. My eye doctor wants me to go on steroids for the systemic sarcoid. He has me on steroid eye drops and a pressure drop (the pressure goes way up really quickly). I refuse to go on oral steroids. I have an appointment with the Vanderbilt doctor in two weeks so I will see what he says. I am off everything but the eye drops. My vision is decreasing markedly. Should I go back on the benicar and mino at a low dose? I've been trying to do the MP since August and am getting no where. I intend to do it somehow. I am wearing my Noirs and staying out of the sun as much as I can. I had posted that we travel 3 hours a day to and from work but we leave in the dark and it's about 30-45 minutes in the sun and we come home after dark. Not too bad right now but I'm worried about spring time and the time change.


While I've been off the benicar and mino I have felt really good most of the time, more energy than I've had in a while. But I can feel that changing. Wanting to sleep all the time and beginning to ache again.

I was going to do a signature line but can't figure out where to go to do it. It's not at the bottom of this site. Can anyone help?
 
 Re: *** Please Ask General Sarc Questions Here
Author: Kas (---.cpe.net.cable.r)
Date:   01-11-05 17:27

Norman,

I know just how scared you feel about the low BP, because I too was really concerned whilst I was on the Benicar. I dropped as low as 51/39 and also thought I was going to die - an awful feeling, during which time I felt so ill and depressed and was dizzy day and night, and I just wished there was a way around feeling so bad. It's at times such as these, that you actually wish you had high BP! My Bp is now back to its normal low of 95/60 ish and I feel fine on that score. I know that the BP drop alone did not cause me to feel so bad, but also the huge hormonal changes taking place in my body, but it was really frightening all the same.


Meg/Moderators,

My liver enzymes came back in the low normal range for the first time in two years. Even my usually raised billy rubin was normal for the first time in my adult life. I am presuming that this is just a wane in my sarc, so I am not overly excited about it. White cell count was 4.1, which for me, is better than it has been in the past.

However, all is not wonderful. The doc can now hear crackles ( of the non- infection sound) when she listens to the base of my right lung from my back Before, she could only hear them when she listened to the front. Does this mean that my fibrosis is worsening, and can it get bad really quickly? I have no breathing difficulties and am able to work out without coughing still. LFT's were normal in early December and a CT is only scheduled for May. I am wondering if I should have it done sooner or if I can wait.

Urine showed a touch of blood. It has been sent for culturing.

Leg pains have largely subsided and are much improved, thankfully. Almost pain free there, so I must have waned.

D- levels were tested today. I should have the results in around two weeks. I will let you know what they are.

I will continue to refuse all pred unless I find myself in a life/death situation.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 18:44

Norman,

Welcome back. Reggie White's death has been discussed in this thread and also touched on in the archived general questions thread. Anytime you are wondering about a topic, you can use our search engine to see if it is listed.

I hope you will find time to catch up on what you've missed in the past few months. Because the Marshall Protocol is a 'work in progress', it is imperative that everyone read SarcInfo and MP.com regularly.

I'm sorry you've had so much trouble with your shoulder. I don't know of any interaction between Vicodin and Benicar. We have not changed our recommendation regarding the dosage of Benicar needed for an adequate inflammatory blockade. This MP.com FAQ, My blood pressure is already low. Can I take Benicar?, explains why.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 19:11

Paula,

Thanks for the update. I'm glad you are doing okay in phase two.

There are less invasive ways than an endoscopy to diagnose a peptic ulcer. You are on a treatment plan (the MP) that can exacerbate gastrointestinal pain that is due to sarcoidosis inflammation. If you do have an ulcer, you have a bacterial infection caused by H. pylori. Ulcers are not caused by stress. This paper lists the interesting historical perspective on the discovery that ulcers are caused by infection.

Trevor has said, "Your doctor should be aware that Minocycline is effective aganist H.Pylori, and that eventually the MP will get rid of the H.Pylori infection too. The issue your Doc has to evaluate is whether your H.pylori infection needs urgent treatment, or not. Most people harbor H.pylori for years with few ill effects. You must remember that the sarcoidosis will kill you, the H.Pylori will generally not do that. You might print out this paper for Doc."

It is okay to take Nexium (a proton pump inhibitor) and/or carafate (an antacid) while on the MP, if you need it to make you feel more comfortable.

Take good care,

Meg
 
 Request for help about next steps
Author: Claire (---.mpls.qwest.net)
Date:   01-11-05 19:17

I am writing because I need some knowledgeable advice on whether I have the type of symptoms that would propel one to get the Vitamin D levels checked. And am I correct in assuming that sarcoidosis can be diagnosed/ruled out by D-metabolite labs. As I review the symptoms, they seem mild, intermittent, and sometimes inconsistent, even contradictory. with the descriptions given in sarc-info.

I am a female in my early 60s and, unfortunately, overweight.

10 years ago I was diagnosed with sarcoidosis. Presenting symptoms were
sore ankles or knees (I do not remember which). A chest Xray showed an
adenopathy. I was treated with 3-6 months of steroids and a follow-up Xray showed no adenopathy. Treatment was discontinued.

I went back to the clinic Dec 2004 to rule out sarcoidosis as a result of a
minor but long-term niggling cough (one I hardly noticed).

A chest Xray in December was negative for adenopathy. The physician did hear a heart arrhythmia (first ever commented on). The ensuing stress test
revealed no ischemia. An echocardiogram this week showed minor abnormalities
only:
* Normal left ventricle size and ejection rate
* No wall abnormality
* Normal left ventricle wall thickness
* Diastolic-a little abnormality with relaxation
* Mild left atrial enlargement
* Normal size-left atrium
* Aortic valve-a little sclerosis; no regurgitation or stenosis
* Tricuspid and pulmonic valves-minor regurgitation
All lab results normal:
* Cholesterol-208 total; 72 good
* Calcium--normal
* Normal-all general physician
* Dr. could not pull up 1,25 dihydroxyl lab test on his screen, so did
not order

My symptoms (all only a minor irritant) of recent years:

1. Low intensity cough at times over the last 6 months (something so
regular that I don't notice it but my husband did).

2. Rash on bottom half of leg-shin front and sides winter 2003-4. Has
returned but a lot less intense Dec 04 to Jan 05.
Course: Very aggravating December 2003,
-disappeared completely within 3 days of arrival in Indonesia for two-week
trip Jan 6, 2004, (of possible interest-I was on Lariam, an antimalarial
prophylactic)
-returned with less intensity in spring (used baby oil for lubrication
instead of lotion and that seemed to help a lot)
-rash disappeared completely over summer. (which is not consistent with
excess Vit D hypothesis, as I definitely have more sun exposure in summer)
-Back moderately at this point (feels itchy, no breakthrough of skin except
three places this winter-the most recent was one red bump; developed like a tube arising out of the skin, dried up and dropped off). ."
Description: I have characterized the rash as having some likeness to
shingles-seems to follow some flow in body (nerve, lymph or blood vessel)
like shingles does, intensely itchy with tendency to form pustules. There
are also discoloration sites.
My Analysis/thoughts: I originally attributed this as a type of eczema
related to dry
skin. But reading about sarcoidosis has raised the possibility that it is
sarcoid caused. But it disappeared in summer. Also, I took Lariam (malaria
prophylactic) from Jan 1 to mid Feb 04 and I've read it is a treatment used
for erythema nodosum-a rash of lower legs characteristic of sarcoidosis

3. Feeling of constriction of throat/at neck-
Course: This was a major aggravant Spring 2004;
disappeared completely summer 2004 (again a period of high sun exposure);
returned but more occasional Fall 2004.
I have been unable to determine a dietary or other cause. Had a little January 4, 05 morning and breakfast was yogurt, toast and ham, banana. This was the first evidence of constriction this in several days.
Description: feels like turtleneck that is too tight, all discomfort in
front of throat and high up, no diminishing in throat function.
My Analysis: I could find very little on the internet about this except as a
possible symptom of GERDS. It does tend to come after eating something,
often seems to have an episode after leaning down. There is no "taste" of
regurgitation to it at all. It is very high on my neck

4. Muscle issues-the most disturbing symptom to me
Description: I have a lot of discomfort with movement that is quite
generalized and my sense is that my muscles tighten and then do not relax on cue, as they ought to. For example, I can feel bumps up and down my legs near shins. I believe they are muscles that have constricted and have not released completely. I get some relief from massage and I think these are called "trigger points."

Four points in my back (3 in. above and below my waist and about 2.5 inches from my spine also seem to tighten and require message to loosen). Some, but not all, are close to the fibromyalgia tender points. I don't think I have generalized fatigue though. Another "tender point" mimic is the pads on the front interior of my knees.

Cramping-occasional after exercise. Two episodes of what I would call a
cascade of cramps in the dermis or close to it of my thighs-very painful.
Has gone away when I have stood and put weight on the leg.

5. Knee-I have had knee issues for 5 years. It was diagnosed as loose
cartilage. [Subsequent study has led me to believe that the diagnosis was
wrong-that the probable cause of pain was a major muscle contraction at the top of my thigh causing pain in my knee and leading to a misalignment.] I had knee arthroscopy about 5 years ago, which did not help. I was helped a lot in one session of chiropractic, but subsequent sessions did not lead to additional improvement. I still have pain and lack of suppleness, but I keep acute problems at bay using self massage, as described in Claire Davies Triggerpoint Therapy Workbook. This book is a godsend at only $20 a copy.

6. Eye issues-very intermittent-sometimes I feel that my peripheral
vision is like looking through bubbles. I bought new glasses on the old
prescription and felt vision was clearer for a while, but the bubbling or
shimmering effect seems to be coming back occasionally--perhaps once every two days.

7. Hammer toes-have probably always been with me somewhat; seems to have something to do with the lack of muscle release.

8. Arthritis-Some of my finger joints definitely look arthritic. Some of
this appears to come and go but those on my pointer fingers seem destined to stay. Right now all my distal knuckles look like they have horn buds arising on each side

9. Elastin-never diagnosed, but my rather well educated sister postulates a
familial elastin deficiency problem.

On the hypothesis that much of this is caused by sarcoidosis:
-I have begun to avoid vitamin D and calcium and sunlight. I have not ordered special glasses yet, nor avoided all daytime walking.

-Fortunately I am not on prednisone or other cortisone meds.

-I have tried to eliminate Vit D from my daily supplement intake.

Sometimes I feel like these symptoms dovetail with sarcoidosis symptomology and sometimes I feel like they are diametrically opposed. Would you please provide any insight that might help me determine a medical course to pursue?

By the way, the medical personnel in my area who might be most amenable to using the Marshall protocol are rheumatologists. If you think there is a reasonably high probability of sarcoidosis, would that medical specialty work for these symptoms?

My basic questions:
1. Do you think what I describe as symptoms is consistent with sarcoidosis?
2. Can an actual diagnosis be made and how (biopsy of leg rash? Vit D labs?, other)
3. I think my heart may be involved--does one need a pacemaker before proceeding with Marshall protocol because of herx (and increased arrhythmias)?

Thank you for your attention,
Clarabel
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 19:28

Lee,

We have had hundreds of discussions of low blood pressure on this forum. Benicar has a minimal effect on blood pressure. Even people with a low starting blood pressure can usually tolerate Benicar. I speak from personal experience.

Norman's main problem is anxiety about his blood pressure. His symptoms were related to the Herxheimer reaction and are an unfortunate necessary evil. Kas's problems with low blood pressure may be due to the fact that she no longer has her spleen.

Low blood pressure is the result of your disease. The symptoms you may experience when you have established an inflammatory blockade with Benicar are due to the disease process. As the inflammation resolves, those symptoms resolve also, even when the blood pressure remains low.

If you do a search of this website, you will find many encouraging stories that illustrate the above statements.

Good luck with your doctor search.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 20:16

Hi Yvonne,

Thanks for letting us know how you are doing. It's not unusual that your knee was more painful when you resumed Benicar and minocycline. That is probably a primary site of inflammation and the surgery may have increased the bacterial level there. What you were experiencing was a Herx reaction.

I'm not sure what you mean by your eyes "acting up". You said, "I now have sarcoid in my eyes again" but that is not a reoccurance since you weren't on the MP long enough to eliminate the bacteria is your eyes.

It's also not surprising that, for awhile, you felt better off the MP. Eliminating bacteria causes Herxheimer reactions. Feeling better temporarily can be misleading because the bacteria continue to multiply and relapse is certain.

I understand that you must work and are doing your best to avoid sun/lights. This is even more important for someone with eye involvement. I hope you are wearing the darkest (2%) NoIRs when you are outside and putting Ketoconazole 2% cream on exposed areas of your face.

If it at all feasible, I would urge you to see an opthalmologist in NY who uses antibiotics to treat sarcoidosis in the eyes. She is familiar with the MP and very supportive. The time and expense would be well worth the trip. Margo, whose daughter has severe sarcoidosis eye involvment, has recently seen her and says that she will take new patients. If you would like her contact info, let us know.

I've emailed you details on how to fill out a signature line,

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 20:41

Claire/Clarabel,

You ask how a diagnosis of sarcoidosis can be made but you said, "10 years ago I was diagnosed with sarcoidosis." Since sarcoidosis doesn't go away without proper treatment (prednisone is not correct treatment), it is easy to see that most, if not all, of your symptoms are due to sarcoidosis. Please see the brochure about the NIH study at the top of this page.

Some of your symptoms-cardiac arrhythmia, throat thightening, cough- suggest major organ involvement. I suspect that your 1,25-D is dangerously high. It isn't unusual for symptoms to improve in the summer months. This is due to THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS.

I urge you to have your D-metabolites tested asap. The results should confirm widespread systemic Th1 inflammation. A Th1 immune system response is due to a bacterial infection and indicates the need for the MP.

The Marshall Protocol is designed to be a safe treatment. You do not need a pacemaker unless you have a heart block now that is causing a severe bradycardia. Cardiac arrhythmia due to inflammation is only effectively treated by resolving the inflammation. In fact, studies show that pacemakers and anti-arrhythmic meds do not alter the course of cardiac sarcoidosis. The average lifespan after diagnosis, without MP treatment, is five years. Your cardiac workup eliminated ischemic causes so the logical reason, considering your sarc diagnosis, is inflammation.

Some rheumatologists use antibiotics to treat inflammation but they often think they work as anti-inflammatory agents and do not recognize the infectious nature of arthritis symptoms. But a rhuemie who has used antibiotics is a good place to start if your other doctors refuse to help. You might find this MP.com thread, A member offers suggestions to get your doctor on board with the MP helpful.

Good luck,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Paula Bakley (---.proxy.aol.com)
Date:   01-11-05 20:54

Dear Meg;
Thank you for your prompt response. Many of my doctors only need to hear my name and not necessarilly see me. My stomach problems are a lifetime, GERD, Irritible Bowel, Hiatus Hernia, Duodenal ulcer, chronic constipation the whole deal. I have had 8 stomach surgeries prior to my Porpyhria Diagnosis all in vain. Betwen that, two, yes two appendectomies, and a C-section and total Hystere , my stomach looks like You could play dot to dot. Every three years I have a Colonoscopy to break the adhesions that form from the scars of Endometriosis. Several years ago they had to sew the cecum and bowel to the side wall of the abdominal cavity as it was kinking and then adhesions would form. Stomach and colon canceer runs in both side s of the family, grandparent both side and my father. Ct Scans and GI series I have to avoid as the prep has caused more blockage that I don't need, two of which required hospitalization. I doubt my GI doctor will do the Endoscopy at this time as he teats me like an angel, but my primary just wants him updated as there was some blood with the last few bouts of vomiting. That calmed down since last seen. I feel like a walking medical misfit. The vomiting is triggered by my migraines.
I feel I have had enough tests and just continue as is. I am handling things just fine and deals with those few little dips and go no further until I know I am ready totake the nextstep. Idon't want to go looking or trouble. I have that cruise to plan. When I ws driving things were worse, but when I relized I should stop driving for a whle I have noticed a big difference. Staying away from stores, shopping driving, in and out of inclement weather all add up. I only go out to go to the doctor and maybe an occasional visit to my children. The car is in the driveway should I need it, but not allowing myself to drie since that emergency hospitalization has made me rest moe, and learn to pace myself a bit better. Yes there is discomfort,swollen ankles, etc., but nothing like before. I was the kind of person that had to have things done three weeks early, now I am three weeks late, but I am finding organizations that can help me for minimal fees for transportation, shopping etc, when my husband is away. I am anxious to see how this ten days goes by. I think I will stay at the same dose again even if all goes well, why push a good thing. I just wish I could sleep.
I hope you are all well, and wish everyone a safe New Year. Mother nature is mad at someone.
Thank you for everything, and I will bring a copy of your note with me. I was biosied for that the last time.
Paula

Neuorosarc 1997, sinus granulomas 1994. On Paxil, Klonopin, Levoxyl, Demerol, Pain, Phenergan, nausea, Porphyria, Migraines, Kidney stone, Osteoporosis. MP 7/04 Benicar160mg, Min100mg qod. BW 11/9BUN 30 Trigl 353, Alk Phos.147 phase2 11/5 Vit D 25Hyd 19
 
 Re: *** Please Ask General Sarc Questions Here
Author: John Dresser (207.118.49.---)
Date:   01-11-05 22:14

Norman,
For what it is worth, I had some scary times getting going on Benicar too. Much like you described. That was the worst time of the first 10 months for me.
Apparently part of my problem was trying to ramp up the dose slowly. I started at 10 Mg every 8 hours. Once I was finally at 40mg x 3/day, I was much better. I'm in phase 3 now, and after more study and consideration, I am trying 40mg x 4/day. Read up on all the info on Benicar dosing so you are confident you know how it works and why you must dose it as the MP requires.

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-11-05 23:35

Kas,

You're probably right about the liver enzymes. We see them elevated briefly when folks are on the MP due to the Herx reaction.

Crackles can be due to a variety of problems. But it would seem that their increase may indicate increased sarcoidosis inflammation. A CT scan will not alter the course of your disease. Only the Marshall Protocol has the potential to affect a positive change.

I'm glad that your pain is better. Keep in mind, though, that sometimes when symptoms are quiet it simply means that the immune system is unable to kill the bacteria. No killing means no Herx symptoms.

I'm glad you are determined to stay off prednisone. Let us know when the D-tests come back.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 00:13

Kas,

You're probably right about the liver enzymes. We see them elevated briefly when folks are on the MP due to the Herx reaction.

Crackles can be due to a variety of problems. But it would seem that their increase may indicate increased sarcoidosis inflammation. A CT scan will not alter the course of your disease. Only the Marshall Protocol has the potential to affect a positive change.

I'm glad that your pain is better. Keep in mind, though, that sometimes when symptoms are quiet it simply means that the immune system is unable to kill the bacteria. No killing means no Herx symptoms.

I'm glad you are determined to stay off prednisone. Let us know when the D-tests come back.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Martin Bardram (---.proxy.aol.com)
Date:   01-12-05 01:06

hi all,

Since my last post I have been back to hospital due to back pain, it turned out to be torn muscle, but when I was there they did another xray and found that the sarc on my lungs is no better if not worse.

I have been made an emergancy appointment on friday with my consultant and have been told to stay on my current dose of pred. Which is a pain because i was hoping to reduce the steroids. I have gathered some info together to give my doc, the NIH study, vit D in sarc and the general info on the MP. Is there any other info I should go with, you never get long with these doctors so I want to give him some facts which are quick and easy to read.

I will also ask him about my previous vit D test and try and get the results.

Thanks for the continued support.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lee (---.ma.seidata.com)
Date:   01-12-05 06:20

Meg.....thanks for your encouraging words.....
I have had low pressure most of my life....and maybe the culprit there was the "sarc" all along.
I developed thyroiditis at age 19.....and have been experiencing low pressures since then.....so always blamed it on that.
I know that low pressure in benign.....but it sure makes ya feel like crap...;P
Sometimes a glass of red wine can boost mine abit.....guess thats ok.....occassionally?!
Good Luck to us ALL!!!!
~lee~
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-12-05 08:04

Lee,

I hope you don't mind me sharing my experiences. .
Years before my sarcoidosis was diagnosed, all I knew was that I had a lot of on-going problems and low blood pressure. I thought the low blood pressure might be related to what was making me feel horrible, because I did seem to feel worse when BP was lower. Doctors and nurses always remarked about it, so I begged them to treat me somehow, to find out why my blood pressure was low. I was told the same thing you were told: that low blood pressure is benign.

After more than two years on the MP, my blood pressure is now more normal than it's been in 20 years. I never think about BP, except in the doctor's office. And, along the road to recovery, I realized (as symptoms resolved) that the things I once attributed to low blood pressure were really the disease. Those symptoms are now gone.

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: *** Please Ask General Sarc Questions Here
Author: Donna Bender (---.neo.lrun.com)
Date:   01-12-05 08:54

I was diagnosed with Sarcoid in 1998. I was put on mega doses of
Prednisone for 3 months. Doctors said I was in remission. My blood sugars
were very high after treatment of Prednisone and it finally leveled out.
In 2002 I was diagnosed as a type 2 diabetic. Can sarcoid lead to
diabeties? I also experience muscle pain and weakness at times.
I read where other Sarc patients have experienced problems with
facial tingling and numbness as I have at times. Also is there any other
new treatments for Sarcoidosis besides Prednisone?

Thank You!

Donna Bender
 
 Re: *** Please Ask General Sarc Questions Here
Author: Rob (---.rn.hr.cox.net)
Date:   01-12-05 10:36

Hello all,
been awhile since I posted, have a few more questions. Back in early December, I has started feeling somewhat rougher than usual; ears ringing & stopped up every day, whole face tender/sore (kinda like a sinus infection feeling). I decided to back off all antibiotics for awhile, to see what effect it would have. I have been off all meds except benicar 40 mg q8h. My question is, even though I have been off all anitbiotics for a little over 3 weeks, can you still have herx? I am still getting herx that were similar to when I started the Z, like fast sharp pains on both sides of chest, and occasionally on the front chest area near the shoulders. These aren't constant nor consistent, just random, and don't last for more than a few minutes. My breathing has proceeded to go back to the old way of being worse (man, I was starting to breath so good up until December!!). Also, there was one week that my whole body ached and just felt horrible, so maybe it could have been a cold involved too? Any ideas/comments?

As usual, thanks to every one,

Rob

Dx-Sarcoid '97 Pulmonary & Lymph, Skin ('99); Phase I - May '04 Benicar 40mg Q8H; June '04 Mino 100mg QOD; D Results June '04 were incorrect (handled improperly); Phase II - Sept '04 added Zith;
 
 Re: *** Please Ask General Sarc Questions Here
Author: Lee (---.ma.seidata.com)
Date:   01-12-05 10:52

Belinda.....please......share any and all with me.....or us!! I appreciate any insight.....as I am really a "newbie" to all of this.
I worked as a EKG tech years ago.....and can possible grasp some of the medical terminology.....but not all.
I am sorry that you too have had such problems. Seems we are all in this together.....
It is the "human side" of this disease I am more interested in.....as the medical community has me really "soured" at the moment!!!!
I had never heard of the word "sarcoidosis" till I was told I had" it" just this past fall.
My mind has had a hard enough time dealing with the real pain of this along with the limitations and the rejection from my local.....and not so local docs. I am in my mid 50's.....but was an active healthy woman less than one year ago. I was even doing "cartwheels" just to prove to my kids I was fit.....hahahaha
Today I crawl around.....can barely dress and care for myself from the pain and depression. I can't see well enough to drive.....and I don't trust any of my senses at this point.
So.....anything you or others can share to help ease a newbies pain is more than welcome!!!
Thank you!!!
~Lee~
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-12-05 13:18

Author: Dale (gizmo.aa.com)
Date: 01-12-05 12:54

Question: I have been told by my phy that she thinks I might have sarc. I have had three cat scans on my lungs and each time the number of nodes has increased from 1-7 moving over to the left lung. I have a cough and a closed up feeling in my throat that causes me to hack, I say it sounds like a cat trying to cough up a hair ball and sometimes it causes me to vomit. Other symp are headace on right side of my head at least 4 days a week, fatiuge, hip pain both hips wakes me up in the middle of the night. Several other symp. SHe gave me the ACE test, and it came back as 75. This all started before memorial day of 2004, after the 2nd cat scan and more nodules showed up (4) I was referred to a surgeon, they tried to do the surgery but could not because they could not get the secondary lung tube in my throat. I woke up in the rec room and nothing had been done. I was refeered to a pulm spec that basically told me oh its only a 4mm nodules nothing to worry about. I am schd for another cat scan in a few weeks. Do you have any advice for me ? How serious is this ? Cannot say I am not afraid of cancer both my parents died from lung cancer.

Dale
 
 Re: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-12-05 13:34

My Internal Medicine specialist told me that the only time I should go and see him was if I had "organ symptoms/pain". Is this correct?
What is the prevalence of this disease in the general population? And what is the fatality rate?

Freddie
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 14:12

Hi Donna,

Welcome to SarcInfo. Please read the links at the bottom of this page and this thread for information on why prednisone if the wrong treatment for sarcoidosis.

Prednisone can cause blood sugar to rise leading to a diagnosis of diabetes type II. Both sarcoisosis and diabetes are Th1 inflammatory diseases.

Sarcoidosis is a systemic disease that can affect any organ in your body, not just your lungs. Please see the brochure on the NIH study to learn why sarccoidosis does not go into remission with prednisone. Many patients with sarcoidosis report muscle pain and weakness. Here is a list of symptoms common to sarcoidosis.

The only safe and effective treatment for sarcoidosis is the Marshall Protocol. That's what this website is all about.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 14:34

Rob,

Herxheimer symptoms are commonly mistaken for cold symptoms. This MP.com FAQ, I seem to be Herxing with Benicar alone? Why? should answer your question. Also, Z stays in your tissues for up to three weeks and can cause a lingering Herx reaction. It looks like you ramped up Z too rapidly. It should take about a year to get to the maximum dose.

Three weeks is a long time to take a break from the work of putting your sarcoidosis into remission. Tissues that have been cleared of bacteria may become repopulated. This MP.com FAQ, My Herxheimer reaction is too strong. What should I do? will give you some suggestions on how to ameliorate the Herx reaction and continue killing bacteria.

Phase two and three have been revised. Have you filled out an MP questionnaire so that you can receive a copy? Phase two can be modified for those people who need better control of the Herx reaction. There is a forum at MP.com that is limited to phase two and three members so we can discuss the phase two and three antibiotics freely. You can apply to the MP.com administrator for entry.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-12-05 14:43

Hello Donna,

In addition to Meg's good advice, I want to add (for anyone/everyone) that oral corticosteroids carry dose-dependent risks that are well known. Before taking oral corticosteroids, patients should be informed about the possible risks that are listed here. Possible side effects from oral cortiocosteroids (prednisone) include:
- fluid retention and increase in weight
- thinning/softening of bones (osteoporosis)
- diabetes
- indigestion or worsening of peptic ulcer
- changes in mood
- impaired healing
- stretch marks
- skin thinning
- bruising
- increased facial hair
- increased risk of infection
- muscle weakness
- eye cataracts
While any patient is on oral corticosteroids, they should be monitored for side effects. Anyone wanting to know more about the side effects of oral corticosteroids should read the links at the bottom of this page. Here is one.

Belinda
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 14:46

Martin,

Doctors are most interested in papers that have been published. Focus on the first three papers listed in the 'papers for physicians' to get his attention. In this MP.com paper, A member offers suggestions to get your doctor on board with the MP that you might find helpful.

For me, a heartfelt plea for help from my PCP who knows me well worked. We will be having a conference on the Marshall Protocol soon. The main speakers should impress any doctor. As soon as the conference brochures are ready, I suggest you show one to your doctor and ask him to help you recover too.

Best,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 15:09

Hi Dale,

Welcome to SarcInfo. Doctors who do nothing but order repeat tests are merely documenting your decline. Your doctor is waiting until your lung damage is severe enough to warrant the standard treatment with toxic prednisone. Please see my post to Donna above for links to information about prednisone.

Your symptoms and elevated serum ACE strongly suggest sarcoidosis. Have you read the doctor's clinic notes to see if they reveal what she really thinks? In my case, a Mayo Clinic neurologist told me not to worry because the tests didn't confirm sarcoidosis. But in his record he said he wouldn't be surprised if my symptoms turned out to be sarcoidosis. I was unwilling to wait for major organ failure to begin treatment. Since I've been on the Marshall Protocol, I've acheived 95% resolution of my symptoms.

I suggest that you ask your doctor to test your D-metabolites. Then post the actual numbers on the website so we can help your doctor interpret them. If they are abnormal, it will indicate that treatment with the safe, effective Marshall Protocol will help you.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 15:32

Fred,

Most doctors, when pressed, will admit that sarcoidosis is a systemic disease that can affect any part of your body. But they rarely acknowledge symptoms that are not associated with major organ damage. This is partly because they don't want to treat relatively minor symptoms with the standard treatment, prednisone, because it is so toxic. So they wait until your condition deteriorates enough to warrant the risk of prednisone.

But many sarcoidosis patients have symptoms that are debilitating and/or decrease the quality of their life. These symptoms are sometimes treated with meds to suppress them. But this is rarely effective because they are caused by the disease which isn't being treated. Prednisone merely relieves symptoms temporarily, it does not affect the course of the disease.

According to one source, one out of every 2,000 Americans has sarcoidosis. Another source says only 5% die from this disease. I believe that is a very low number. Many deaths in sarcoidosis patients are attributed to other causes because doctors believe the myth that sarcoidosis is a benign disease that usually goes away on its own. The death of Reggie White illustrates the lack of respect given to this lethal disease. He died suddenly and is known to have had sarcoidosis for years, yet the press has emphasized that sleep apnea may be responsible. That is ludicrous.

I hope you will tell your Internist that you want to recover now before you get worse.

Best,

Meg

P.S. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

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: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-12-05 16:22

Thank you Meg, I have added the little bit of info that I can to my profile.

I will read the Reggie White thread. Sleep apnea as a cause of death?
I took psychology as a major in university. I left after only 3 years, but correct me if I am wrong....
Sleep apnea will cause repeated "awakenings" during your night's sleep, but it rarely kills.
Sleep apnea is usually caused by being obese. It is caused by your girth pushing down on your airway, causing you to temporarily stop breathing. When your brain realizes this, it causes you to awake and "shift" to alleviate this. Sleep apnea may cause fatigue, but death? I don't believe in saying never but I agree with you. This is absurd. Almost as absurd as straggling yourself to death.
It seems to me that the scientific community does not like NOT knowing about something.(pardon the double negative) This disease was discovered in the 1800's and they still do not really know why people get it.
It's almost like a pariah disease.
When I was in the ER for my second bout of EN, I can now see that they knew what it was but were afraid to say so. It's almost like they feel that if they say "sarcoidosis" that their peers will think they are quacks.
I had 3 doctors and 2 interns attend to me, and I could see in their faces that they wanted to shove the responsibility to someone else.
At least my internist was wise enough to see what it was. He has treated other sarc patients b4, so I was lucky, I guess.
I am trying the no Vitamin D treatment, 2 days so far. And, although it's probably in my head...I feel a little better. I will give it 3 months before I talk to him about MP. Frankly the side effects of it scare me. Then again, I am "new" to the disease, so it may...probably will, get worse. But I will take it a step at a time.
The thing I have noticed about sarc is the psychological aspects of it. No one really knows about it. You tell your family and they are like "sarc what? A mystery disease I have never heard of with no cure that attacks your body and makes you feel like crap?" It's almost like people think you are making things up. One thing that has helped me, and it's only been 2 or so days since I have found this wonderful site, is the "family" that I have found here. We're all in the same boat and we are all willing to help each other. I am amazed how you guys (girls) answer all these questions. You not only answer them, but you answer them incredibly fast!
Even though I am a "newbie" I can honestly say that I speak for everyone here by saying thank you. Not only by helping us all start to get better physically, but mentally as well.
Thank you
Freddie

dx Nov 2004 -- EN JUN 2004, OCT 2004-- Eyes SEP 2004, FEB 2005-- Lungs (1) JAN 2003-- Joints JUN 2004 No VIT D Jan 11 2005 Skin lesions-July 2005 Fatigue since Jan 2005
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 19:05

Fred,

Sleep apnea is considered lethal by some authorities because it is associated with irregular heartbeat, high blood pressure, heart attack, and stroke or traffic accidents due to sleepiness. IMO, either obstructive or central sleep apnea could be the result of sarcoidosis inflammation. In the case of sudden death of someone known to have sarcoidosis, such as Reggie White, arrhythmia due to cardiac inflammation is the most likely cause of death.

You may not be as new to sarcoidosis as you think. I hope you will try to persuade your doctor to test your D-metabolites. Sarc inflammation will be reduced a bit by avoiding Vitamin D but it is continuing to damage your body as long as it goes untreated.

You needn't be concerned about the "side effects" of the Marshall Protocol. Most people adjust fairly easily to the Benicar blockade. Some feel immediately better. And the antibiotics can be adjusted so that the Herxheimer reactions are tolerable. Your concern should be in allowing this disease to reduce the quality of your life and live in fear.

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: *** Please Ask General Sarc Questions Here
Author: Fred (---.sympatico.ca)
Date:   01-12-05 19:21

Thank you, Meg, for your feedback.
I know, now, that I have had this for a while. It's like a puzzle, really.
All of a sudden i'm like "ohhh...that's why this happened" or "that's why I felt that way"
Again, I will see what happens after 3 months. Then, I will try MP.
You even said "most people" adjust fairly easily to the Benicar blockade.
I am just a little scared about the whole thing. Again I will take it step by step.
Luckily, I don't have to worry about getting my d-metabolites tested. I live in CDA so health care is free. My doc is supportive (never mentioned MP to him yet, just learned about it). I can demand it. I will call him this week.
Feeling tired. So I will rest now, but thank you again.

Freddie

dx Nov 2004 -- EN JUN 2004, OCT 2004-- Eyes SEP 2004, FEB 2005-- Lungs (1) JAN 2003-- Joints JUN 2004 No VIT D Jan 11 2005 Skin lesions-July 2005 Fatigue since Jan 2005
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 22:10

Author: Christa (cache-mtc-aa01.proxy.aol.com)
Date: 01-12-05 21:50

can anyone tell me about blood work -I am a diabetic and am in MA school. We took blood and ran a sedrate analysis and I got 71mm/hr. can anyone tell me what a sedrate is supposed to be for a diabetic? I know that ina female that it is supposed to be 0-20. but I do not know about a female diabetic.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-12-05 22:15

Hi Christa,

Welcome to SarcInfo. This is a 'website' that was created to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis. Do you have sarcoidosis?

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: *** Please Ask General Sarc Questions Here
Author: Kas (---.cpe.net.cable.r)
Date:   01-13-05 04:56

Meg,


If your lungs are getting more scarring, as I am afraid mine may be, as my doc hears crackles where she never heard them before, will the MP be able to halt that progression soon enough to not cause more damage? I am totally against even starting pred and hope I will not be forced to by declining lung function, which fortunately has not happened to any great extent yet. I can still have no breathlessness etc, just a full feeling in the diaphragm at times.


Although I am really fearful about going back onto the MP drugs, I am of the absloute opinion that it is my only hope for a future at all. I have asked for my CT to be pushed forward to February and think I want to start it again by next month or so. I still have my stash of Benicar and even some mino!


I remember Trevor recommending that I try a three month probe of mino alone to allow some of the bacterial load to be lessened and perhaps make it easier for me to be on the Benicar. Would this still apply in my particular case?


P.S. How do I add a signature here?
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-13-05 07:32

Kas,

You need to ask your doctor exactly what the increased crackles mean for you. I believe you are right about the Marshall Protocol being your only hope to halt the progression of your disease. But it needs to be followed exactly with regard to sun/lights and you didn't seem to be able to do that.

Your medical condition is further complicated by your asplenia. In view of these issues, Trevor suggests that you not resume the MP, unless your doctor calls him.

Minocycline alone is unlikely to be of much help in your situation.

Best,

Meg

P.S. I've emailed you info on how to add a signature line.
 
 Re: *** Please Ask General Sarc Questions Here
Author: Ms Dale (---.proxy.aol.com)
Date:   01-13-05 10:47

Eurico,

I wanted to share my experience regarding the Benicar dosing.
What Meg suggested to you regarding the 20 mgs dosing schedule
during the day and 40 mgs at bed time - works very well.
I did it myself.

Hang in there Nicola - it just keeps getting better and better!


Ms Dale
 
 Re: *** Please Ask General Sarc Questions Here
Author: Kas (---.cpe.net.cable.r)
Date:   01-13-05 12:05

Thank you, Meg.


I will certainly ask my doctor to call Trevor and I just hope she will. She does read everything I print up for her, but seems to be phone shy, for whatever reason. If patients with scleroderma and lupus seem to be improving on mino alone, would it be totally impossible for someone with sarc to also do so? I remember reading about patients in the UK who did get considerable initial improvement using Mino in small doses.


Does my asplenia alter the entire functioning of my immune system, thereby making it react so differently to the Benicar? A small piece of my spleen was left behind in error ( splenuole, I think it is called), and apparently it does function and shows no granulomas on CT/MRI. I ronically, since splenectomy, my general health has been really good - my sinusitis is now infrequent and I have not had a cold since. I appear to miss less work than any of my colleagues, and in fact, rarely do.

I wonder if there are any other patients on the MP without a spleen? If so, it would be interesting to hear how they cope on the Protocol.


I do my best to avoid sunlight/lights, but it is very difficult to implement this fully if you work. I presume to be successful on the MP, you have to stay at home for months or years? I wish that it could be so easy... I do get the entire summer off, and can be at home then.
 
 Re: *** Please Ask General Sarc Questions Here
Author: John Dresser (207.118.48.---)
Date:   01-13-05 13:21

HEY! FRED!
My recommendation is you listen to Meg. Get your D tested now, that will give you a good idea exactly what your situation is and will give you strong reason to get going on the MP now.
The MP is a long protocol. My experience tells me you can't afford to waste 3 months thinking about it. More damage can be done while you wait.
If you read the info on this site and you understand it and believe in it, you need to educate your doc so he too understands it and you both are confident you understand how it works. If you start now, there will be fewer bacteria to have to kill........and they die at a very slow pace, just as they have accumulated slowly over the years. Start now and you hopefully will be healthy at least 3 months earlier than if you wait.
Best wishes, John

John Dresser
Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2.10.04 **1,25D=58.1 * 25D=18.1 **-phase 2- 6.1.04, phase 3- 9.16.04, strongest herxs 1st half phase 3. 4.18.05 **1,25D=13 * 25D=6 ** light herxing in last phase 3 abx combo 10/05
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-13-05 14:29

Author: Gloria (pcp0010364882pcs.woodln01.md.comcast.net)
Date: 01-13-05 14:16

First off, my prayers go out to all of you and your families. I have been diagnoises with a double whammy. I have MS and Spinal Sarcoidisis. Right now I am in an emotional rollercoaster. I was so dumbfound, I failed to ask how the two diseases will interact with each other.

Does anyone have any information on Spinal Sarcoidisis? Any and all information will be helpful.
 
 Re: *** Please Ask General Sarc Questions Here
Author: itiona (---.client.comcast.net)
Date:   01-13-05 15:01

Hi team,
I was just curious to know why my blood pressure is not lower than what it is after consuming so much benicar(BP138/90, pulse 96) could this represent some additional undiagnosed problems. Please help with your professional experience.
Thanks
Itiona

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-13-05 17:20

itiona,

Benicar has only a very mild effect on lowering blood pressure. That is why most doctors don't use it very often. It's antihypertensive powers max out at 40mg a day. This increase in dosage of Benicar on the MP, will have almost no increased effect on lowering blood pressure.

Not all sarcoidosis patients experience problems with blood pressure. But some will have high blood pressure and some will have low blood pressure. As the Marshall Protocol resolves your inflammation, your blood pressure should normalize.

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: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-13-05 18:31

Kas,

I don't know that people with scleroderma and/or lupus are improving on minocycline alone. Can you provide some references?

This article on asplenia states that "Absent or defective splenic function is associated with a high risk of fulminant bacterial infections". That would seem to indicate that the absence of a spleen has some effect on the immune system.

I don't know of any other people on the MP who are without a spleen. I'm glad that your 'general health' seems okay. But your pulmonary function seems to be compromized, based on what you said about your last physical exam.

I understand the need and/or desire to continue working. And for some people, that is possible while on the MP. It didn't seem to work for you. We know that sarcoidosis doesn't go away spontaneously and that it continues to damage the body. So, at some point, you will probably be forced to follow the MP completely or go on prednisone to calm your symptoms. Keep in mind that some organ damage isn't reversible.

Take good care,

Meg
 
 Re: *** Please Ask General Sarc Questions Here
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-13-05 19:30

Gloria,

One possibility is that you have one disease. Sarcoidosis and Multiple Sclerosis are both diagnosed by exclusion, and what is actually sarcoidosis is often misdiagnosed.

The published literature says that MS is indistinguishable from sarcoidosis affecting the nervous system. This article says, "Symptoms and signs observed in MS reflect lesions present mainly in the white matter of the central nervous system (CNS). The diagnosis remains difficult, at least concerning presenting symptoms, because of their low specificity. Diagnosis criteria are usually based on dissemination of signs in time and space, evoked potentials, findings of magnetic resonance imaging, results of cerebrospinal fluid examination, and the exclusion of other diagnosis possibly explaining the clinical signs. However, no clinical and paraclinical investigation can distinguish with certainty MS from other conditions such as autoimmune or inflammatory diseases predominantly affecting the central nervous system. These other disorders include systemic lupus erythematosus, antiphospholipid syndrome, Behcet disease, Sjogren syndrome, sarcoidosis and vasculitides."

Here is another article.

Spinal sarcoidosis is the same disease as when it affects any other organ -- but in your case, physicians can see from diagnostic tests that it has affected your spine. This article says "bone involvement in sarcoidosis is not uncommon but may be overlooked as a cause of symptoms." Even young people can have spinal sarcoidosis, and after what is considered "spontaneous remission" of their lung involvement, a sarcoidosis patient can later have skeletal involvement. That's because sarcoidosis doesn't go away, which is what the NIH-funded ACCESS study found.

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: *** Please Ask General Sarc Questions Here
Author: Shelly Graff Thoms (---.ne.client2.attbi.com)
Date:   01-14-05 20:52

Hi,
My name is Shelly, I found your website when I was looking for answers to my High ACE levels.

ACE 395 ( normal < 40)

I had a medialstinal biopsy of my lymph nodes which came back neg. for sarcoidosis. Does anyone have any ideas where I should go from here.

Any suggestion would be greatly appreciated,
Thank you,
Shelly
 
 Re: *** Please Ask General Sarc Questions Here
Author: Shelly Graff Thoms (---.ne.client2.attbi.com)
Date:   01-14-05 21:00

Hi again, I forgot to tell you that my SED Rate was 4 (normal <20)

Thanks again,
Shelly
 
 Re: *** Please Ask General Sarc Questions Here
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-14-05 21:54

Hi Shelly,

Welcome to SarcInfo. Serum ACE is a Th1 inflammatory marker. It is pretty specific for sarcoidosis but is also elevated in lymphoma, pulmonary tuberculosis, asbestosis and silicosis. Your doctor will probably want to rule out these other diseases.

Your sed rate is normal. This is a test that is only a screening tool and not useful for diagnosing any particular disorder.

Sarcoidosis is a systemic disease that can affect any part of your body. The negative lymph node biopsy could mean that the sample missed the granulomatous tissue or that the inflammation is located in other parts of your body.

You can check this list to see if you have any other symptoms of sarcoidosis.

There are other markers for Th1 inflammation. I suggest you ask your doctor to test your D-metabolites. If they are abnormal, a diagnosis of presumed sarcoidosis can be made based on clinical signs. This would mean that your disease can be safely treated with the Marshall Protocol.

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

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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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