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Deedee
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Posted: Mon Aug 11th, 2008 01:48 |
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I received a diagnosis of Stage I Sarcoidosis after a MRI screening for breast lump showed swollen chest lymph nodes. Interestingly, my husband was diagnosed with this disease 25 years ago. Later I read that spouses have a 1000X greater chance of being diagnosed with Sarcoidosis than unrelated people. If that does not point to something that in communicable, I don't know what would.
I had no signs that I attributed to having this disease, although I am now thinking of an array of problems that have come and gone over the years (terrible sinus infections in the early 1990's, bad asthma and allergies in the late 1990's, out of control lipids and weight gain throughout the 1990s (reigned in with low-carb, niacin and red yeast) and leg crampsand swollen legs a couple of years ago that resolved, which all may have been attributed to sacoidosis. My sinus problems resolved after cutting milk out of my diet, the regurg and swollen legs after I stopped drinking any alcohol at all in 2001 and the leg cramps had been gone for a year until they visited me again last night. All in all, I have felt very good, so what a shock to get this diagnosis!
When my husband was diagnosed, there was no internet. We were told that in a year we would know "if it is the kind that comes and goes any without causing problems, or if he will die." When I got my diagnosis I was told, "We will know in 3-6 months if it will be the progressive kind or if it will go away. You have a 95% chance it will go away."
As I read more about sarcoidosis the horrible realization came that it never goes away. I started wondering about my huband's health--his slow hearing loss over the years, the two angioplastys (with no known risk factors and perfect lipids) and his severe restless legs and jerking at night. Are these problems, I wondered, Sarcoidosis?
It was a terrible shock to me, as over the last few months, I have felt better than in all of my life. Another revelation: I started Vitamin D about 5 months ago. Have I been on a Vitamin D high? I also quickly dropped about 15 pounds and although I was trying to lose weight with diet and exercise, I now wonder if it was the sarcoid, and if so, why sarcoidosis makes you lose weight?
After a terrible painful mediastinoscopy and a frightening diagnosis, I have spent 2 weeks for 10 hours on the internet. There are studies in many different countries and in Universities that support the MP's findings, such as an acquired (or genetic?) immunity problem, The Vit D receptor connection and the advice to avoid Vitamin D and the sun, and the evidence that pathogens live in sarcoid tissue. Also obvious is the lack of funding and attention to finding the cure for this disease, until I found the Marshall Protocol.
It took someone like Dr. Marshall and his team of people who were highly motivated by their own disease, and who have the knowledge and ability to research a disease that most pharmacuetical companies and government funding has little interest in researching, to earnestly find what CAUSES the disease and how to TREAT the underlying cause and find a cure. I am looking forward to learning what they will discover next about TH1 disease!
I feel fortunate that if I had to get this disease, I got it during this time when I can benefit from the hard work of the Marshall Team research folks, the volunteers that were sick of being sick and ready to try something new, and the volunteers that run this website and others, such as http://www.bacteriality.com. The mere fact that all of these folks have nothing to sell, and nothing to gain monetarily by offering this study, this website, their expertise and their precious time volunteering is proof positive to me that this is not for personal gain, but truly to find a cure for Sarcoidosis and other TH1 diseases. Thank you. Thank you. Thank you.
My husband is ready to start the plan, as well. We have a doctor willing to help us with this protocol. Yes, I am devastated, but I am excited too because I do not have to do ridiculous "watchful waiting" whatever that is suppose to mean. What? Wait to see if you become disabled or die or not?
Questions I have are as follows:
How long does it take to be infected before the lymph nodes show up on Xray or MRI? Are we talking a decade, several years or as few as 12 months or less?
Since I am stage I, can I assume that my bacterial load may not be so high?
My doctor started me on minocylcine 100 mg 2 X per day, 3 days a week without the benacar and my eyes did get red and I had one day of feeling very tired. I read later that the max dose should be 100 mg which is worked up to and only after the Benacar is started. I have stopped the minocylcine until I can talk to the doctor and will restart after the benicar is in my system. I need the help of this website to do this right. Is this where I will post any questions to get help?
Is there any way to get in the study, perhaps the one with "less sunlight" instead of no sunlight? (However I can do this either way.) I did sign up on the waiting list but have not heard back. Do I just assume that the request was received and wait to hear back or does someone let me know I am on the list? Can I add my husband too or is one spouse enough to be on the waiting list?
Also, my husband is on Prevasin, as he has a diagnosis of serious CAD (2 angioplasties 5 years ago.) I viewed Dr. Marshalls videos on You Tube and saw that this statin does not have an affinity for the Vitamin D receptor. Can he continue to take this?
And finally, if anyone is near Asheville, NC please contact me through my profile.
Blessings to all!
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Deedee
Member
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Posted: Tue Aug 12th, 2008 03:21 |
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| My eyes are red and I went to the eye Dr. and he said there were no signs of sarcoidosis in my eyes, but I am worried that this is a sign that I could be having problems due to the sarcoidosis. Or, I guess it could be a virus. Can uveitis start with just red, dry eyes? If you take steriod drops for your eyes, does that keep you from doing the MP?
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Julia
Member
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Posted: Tue Aug 12th, 2008 12:36 |
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Deedee,
How long does it take to be infected before the lymph nodes show up on Xray or MRI? Please see My lymph nodes are growing. Is this normal?
Since I am stage I, can I assume that my bacterial load may not be so high? Possibly. But the 'staging' system is out of date and a poor indication of how far advanced your disease actually is.
My doctor started me on minocylcine 100 mg 2 X per day Please, for your safety, familiarise yourself and your doctor with the Phase 1 guidelines - print them out for both of you.
Is this where I will post any questions to get help? For medical help you must refer to your doctor, who has access to information, guidance, and discussion with other professionals, in the private Professionals' Forum. For non-medical questions and general advice, you are welcome to ask here in your own personal thread.
Is there any way to get in the study, perhaps the one with "less sunlight" instead of no sunlight? The study has no distinctions in its membership. See Light sensitivity. Your husband should submit a separate application to be on the waiting list.
my husband is on Prevasin, ....Can he continue to take this? This is a decision for your husband's doctor. See Should I stop taking any of my medications?
Can uveitis start with just red, dry eyes?
Sarcoidosis is so frequently linked with eye problems that you must take any deterioration in eye condition very seriously, as it can progress rapidly.
If you take steriod drops for your eyes, does that keep you from doing the MP? No. Steroid drops are not ideal, but sometimes the need for urgent intervention outweighs anything else. See Eye Inflammation. Pre-MP I had four courses of steroid drops that never cured my uveitis, but as soon as I started the MP it went away 
I started Vitamin D about 5 months ago. Have I been on a Vitamin D high? Very likely!  Vitamin D is a steroid hormone that suppresses your immune system. Take care reducing it - see Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Some sarc patients are overweight, some are underweight. Sarcoidosis has a profound effect on your hormones - and so does the MP. See Will the Marshall Protocol help me lose weight?
Julia 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Deedee
Member
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Posted: Tue Aug 12th, 2008 13:29 |
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Thank you for your reply and your help.
Last Friday I took one 100 minocycline and I did not take another afterwards. I am meeting with my Dr. tommorrow and will ask him to help me follow the guidelines strictly. My eyes are much better today, only a little itchy in the corners and very little redness. The cough I developed post surgery (mediastinoscopy) seems less today too, which may have also been from the antibiotic, I suppose.
I guess in a way I have inadvertently done my own minocycline challenge and I can see that I have a bacterial load. I will take it slow and easy.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Deedee
Member
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Posted: Thu Aug 14th, 2008 00:23 |
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I visited the doctor today. He will sign back up on the doctors list, and was unaware he did not make it to the new list. I will be his first sarcoidosis patient, although he has used MP for other disorders with very good results. Questions he deferred to you:
If I am in a very shaded house (no direct sun rays into the house) will this be OK to help limit the Vitamin D sunlight exposure? If I can tolerate this with NoIRS can i avoid putting up curtains?
Confusion about Benicar and minocycline I have read to take more Benicar to counter-act ABX and take minocyline to counteract Benicar Herxing. I am not sure how to interpret this. How do I tell what is causing the herx and which to take to relieve symptoms?
Red eyes. My red eyes are getting better, but are still red. I have not had minocycline since last Friday. Today is Wednesday. Should I wait until the red is entirely gone before starting the protocol, or would it be good to start the Benicar now, even if my eyes are red?
Vitamin D results (I had been taking VitaminD for several months 1000 IU per day)
D1,25 -- 53; D25 -- 54 Blood taken before I stopped Vitamin D. I have not had Vitamin D now for 3 weeks. I am off all supplements for 2 weeks and am only taking natural HRT.
Wearing NoIRS, helping with red eyes. Using recommended sunscreen, covering up. Post-surgery mediastinoscopy cough/twitchy lungs resolving.
Dr. and I agreed to procede with the protcol, follow it by the book, and be cautious. He thinks it is a very good decision for me to do the MP. I will start Benicar next week unless you tell me to wait until eyes totally clear. I will wait at least a week until i start minocycline unless you tell me to take the mino if I get symptoms from the Benicar. I will start the minocycline at 25 mg Mon, Wed, Friday, and if it goes ok increase to every other day for several weeks. Then consult with Dr. again. If any of this is not right, please correct me.
Should I be posting once a week here with results, or wait until I am ready for phase II and/or accepted into study?
How can I donate via mail? Can I set up a monthly draft?
Thanks.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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natalie17
Moderator
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Posted: Thu Aug 14th, 2008 07:39 |
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Hi Deedee,
If I am in a very shaded house (no direct sun rays into the house) will this be OK to help limit the Vitamin D sunlight exposure? If I can tolerate this with NoIRS can i avoid putting up curtains?
You need to keep your house at around 30 Lux . 30 lux means 30 lux artificial light, not sunlight. You want NO sunlight coming in the house, if you want to go without your Noirs and skin protection. 30 lux from an incandescent bulb is fine for unprotected exposure.
See Light sensitivity-basic information
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
Confusion about Benicar and minocycline I have read to take more Benicar to counter-act ABX and take minocyline to counteract Benicar Herxing. I am not sure how to interpret this. How do I tell what is causing the herx and which to take to relieve symptoms?
Immunopathology (Herx) is caused by bacterial die-off as a result of the immune system targeting and killing the Th1 pathogens. See -
Benicar-Basic Information
What should I know about Minocycline?
Immunopathology Tutorial
which includes...
How to Identify immunopathology
How To Manage Immunopathology
Red eyes. My red eyes are getting better, but are still red. I have not had minocycline since last Friday. Today is Wednesday. Should I wait until the red is entirely gone before starting the protocol, or would it be good to start the Benicar now, even if my eyes are red?
This is a question you should ask your Doctor and follow his instruction.
Vitamin D results (I had been taking VitaminD for several months 1000 IU per day)
D1,25 -- 53; D25 -- 54 Blood taken before I stopped Vitamin D. I have not had Vitamin D now for 3 weeks. I am off all supplements for 2 weeks and am only taking natural HRT.
If you would like help understandin your D-metabolites results, see;
How to post your D-metabolites tests results
Should I be posting once a week here with results, or wait until I am ready for phase II and/or accepted into study?
This site is for general questions you need help finding the answer t, no aplace to post weekly reports as people in the study do (this is not a study site).
Please do keep in close contact with your Doctor.
How can I donate via mail? Can I set up a monthly draft?
See http://autoimmunityresearch.org/donate.html
Best,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Deedee
Member
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Posted: Mon Aug 18th, 2008 14:07 |
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Question: Can I take Benciar and tylenol together?
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Rico
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Posted: Mon Aug 18th, 2008 14:36 |
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You can check this page to see what meds are not recommended:
Medications To Avoid on the Marshall Protocol
PAIN CONTROL
BENICAR-Basic Information
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Deedee
Member
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Posted: Mon Aug 18th, 2008 14:41 |
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| Thanks. I saw on this list that it is OK to take pain meds but I just was not sure whether the MP protocol allowed them to be taken with the Benicar or if I should wait an hour or more in between. If the timing is not specific to the MP, I can call the pharmacy.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Deedee
Member
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Posted: Tue Aug 19th, 2008 02:33 |
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I started Benicar yesterday--- my cough is less. I actually feel pretty good and feel calmer, and I wonder if the Benicar can make you feel less anxious. But I am writing tonight to ask a question because I am a bit confused about the protocol and I want to do this right.
I read that my D25 should be 20 or less for my innate immune system to start working and that higher levels can impend the ability of the medicines to fight bacteria because the immune system is essentially turned off by the high Vit D. I had it tested several weeks ago when I learned I had sarcoidosis and I found the MP. It was 54. I had been on supplements, including Vitamin D, which I discontinued immediately (3 weeks ago.)
I am also avoiding as much sunlight as I can, but I commute to work. I cover up, I am using the NoIRS and sunscreen, I am not eating anything with D in it.
I read that Benicar can cut Vit D1,25 by about half in 2 weeks. If my D25 is reduced by 1/2 it will be 27 in 2 weeks which is well above 20. This is the same time I am supposed to start the minocycline.
My question is:
Should I wait until I get the D below 20 before going onto the minocycline or should I just carry on with the 2 week intervals, adding the ABX and ramping up, depending on whether I herx or not and the severity of the symptoms?
I have earnestly tried to find this information on all MP websites and I can not locate it, although I have read extensive information on Vit D and when to ramp and when not to ramp. This question is specific to the Vit D level and whether or not it effects when to add ABX and/or ramp up.
I know you are busy and overwhelmed. I hope to be able to give back at some point by volunteering and I think you in advance for your help.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Julia
Member
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Posted: Tue Aug 19th, 2008 08:39 |
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Deedee,
Thank you for searching for the information before asking! We appreciate that, and we're here to help when you can't find stuff.
The reason you're having problems sorting the info is that you seem to be confusing 25-D with 1,25-D. 25-D is the hormone precursor, that converts to 1,25-D, the actual hormone. Benicar will rapidly reduce 1,25-D, but 25-D is fat-soluble, so lasts a long time, stored in fat cells. It can take months to get 25-D down to the target level if you've been supplementing heavily.
But there's no need to wait to start the minocycline; though it may mean you don't have much immunopathology at first until your D level comes down. Meanwhile be extra vigilant about avoiding D in your diet:
Reducing 25-D
Food Tips
Julia 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Deedee
Member
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Posted: Mon Aug 25th, 2008 16:32 |
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Greetings and clarification requested regarding sun exposure.
I have been on Benicar X1 week, sleeping better, no big problems. Some sinus drainage, feet cramps, cough, sneeze, wheeze but nothing big. I feel a little better every day, recovering from mediastinoscopy and now on Benicar. Sleeping better with Benicar.
Question regarding sunlight exposure :
I have read "What are the latest recommendations regarding sun exposure?" http://www.marshallprotocol.com/view_topic.php?id=7328&forum_id=32
and I have questions.
I have not had any real sunlight problems pre-diagnosis. Was in sun all day on Kayak trip several weeks ago and I had no problems.
I had red eyes post-surgery, which are slowly resolviing and I am wearing the NoIRs, which helps.
I understand the need to reduce skin sun exposure to help reduce Th1 conversion to D1,25. For eyes, to reduce neuro symptoms and red eyes.
When I go out I wear: Orvis gloves (30 UPF), long sleeves and jacket, sock, pants, Orvis Balaclava (covers head, face, Blocks 95% of UV rays, very cool and comfortable) with scarf or UV hat on head, NoIRs. Neutrogenia 85 sunscreen under it all on face, hands and forearms. I have not felt any ill effects from any sun exposure (so far.)
I have read all the info I could find on sun exposure on all 3 websites, including the new guidelines. What is confusing to me is how to balance more sunlight exposure with the sunlight creating more D1,25 in Th1 disease, thereby inhibiting the innate immune system.
Since we won't be measuring D1,25 and D25 is converted to D1,25 by Th1 disease, and Th1 can fluctuate, how do I know if I am getting too much sun or not? Do I just go by how I feel?
I would like to go to an outdoor festival next weekend with my sun-garb on and venture outside more often. I still will spend most of my time in dark house and dark office. I will have been on Benicar 2 weeks by then. I understand that in 2 weeks, Benicar can cut the Th1 by 1/2. How does this figure into the big picture?
The success stories help keep me from freaking out. Thanks to all that post.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Chris
Moderator
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Posted: Mon Aug 25th, 2008 19:41 |
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DeeDee,
The admonition to not have natural light inside is an admonition to get no natural sunlight exposure if at all possible. The temptation to venture out is at least partly because you will feel better when you do so, and that will because your D levels will go up.
Benicar can reduce the 1,25-D. But it doesn't take much sun at all to make it jump up. Light exposure generates 25-D as well as 1,25-D, so it will delay your progress towards getting below the therapeutic level for 25-D (12-15).
You probably won't feel much from sun exposure now, as your D-levels are already high. It's when the D-levels get down, and a bit of sun causes them to jump that the hormone shifts get nasty.
Don't put too much faith in UV-blocking cloth, unless it's also blocking visible light. Sunlight is intense enough that even the visible portion of the spectrum, down into the infra-red, should be avoided. When driving in a car, I still put a towel on my lap as the warmth from the sun through the window is too much.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deedee
Member
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Posted: Thu Sep 4th, 2008 02:52 |
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I am having a problem with being dizzy, coughing non-stop and very tired. My feet are very cold. I started the mino Monday and this is my second dose. On benicar 4X a day with no more than 8 hours in between. My BP normally runs 130-110/90-80 and is currentlyl only 95/50. I am trying to be very independent so as not to trouble you, so I researched under the Blood Pressure link and came to a link entitled "Treatment
Adjusting Benicar and/or antibiotics is the best way to manage [highlight= rgb(255,255,136)]dizziness. Please see My immune system reaction is too strong. What should I do?
but the program will not allow me to open and read this link. Can you cut and paste it for me to this request for information? Thanks.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Deedee
Member
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Posted: Thu Sep 4th, 2008 02:58 |
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Nevermind....I found it elsewhere on the site:
"For those who are more symptomatic, taking the Benicar (in half tablets) 20mg @ Q3H by day and 40mg @ bedtime to go longer / up to Q6H to sleep.. may give better relief of symptoms.. it may take a couple of days to feel the difference.."
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Julia
Member
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Posted: Thu Sep 4th, 2008 09:33 |
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| That link has been updated: the new one is What to do when immunopathology (immune system reaction) is too strong. It's in the topic How to manage immunopathology, which is part of the 'required reading'. Thanks for doing your own searching!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Deedee
Member
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Posted: Fri Sep 26th, 2008 03:36 |
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I am doing well in Phase I and am currently on 50 minoQ608 Bencar, ready to ramp Saturday. I am had some interesting IP but nothing I could not tolerate.
My question is in regard to the flu shot. I have ready Dr. Marshalls info on the risks involved with immunizations being contaminated. I am however, afraid to go without the flu shot. I had the flu once and I was in bed for over 3 weeks. I have some apical scarring that I wonder if it is from the flu. It is not sarcoidosis, according tothe pumonologist and the cat scan. My sarcoidosis is in my lymph nodes in my chest.
I know there are risk that I COULD get a contaminated shot, but I am wondering fir the fact that I am on the protocol would take care of any microbacteria that could be present in the flu shot, also what are the chances it would be contaminated?
Also, my husband has lung damage from his sarcoidosis and we are afraid it could severe compromise him if he becomes sick with the flu. We also take the pneumonia shot.
Thanks. Deedee.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Deedee
Member
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Posted: Fri Sep 26th, 2008 03:38 |
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That is 50 mino and Q6-8 Benicar
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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Julia
Member
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Posted: Fri Sep 26th, 2008 09:31 |
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Deedee, this is a matter to discuss with your doctor. See Should I get the flu shot?
As you know, there are two groups of members on this site: those who are also members of the MP study (who post mainly on the main study site MarshallProtocol.com, including obligatory weekly progress reports, and receive MP advice and support from experienced nurse moderators), and those who are on the MP independently, through their doctors.
To be placed on a waiting list for study membership (there is no guarantee that a place will ever become available) please see MP Memberships Temporarily Closed for instructions. We would dearly love to be able to help everyone, but we have a very small band of volunteer nurses, backed up by a very small band of volunteer advocates.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. Those who are on the MP independently must refer to their doctor for medical issues, and learn to search the MP 'library' on the study site to find information.
All the information you need is in the MP 'library' on the main site. Here on this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success. Please use the search facilities first to see if your question has already been answered - see How to do a site search.
Non-members might also enjoy reading the members' informal discussion board MP-Lifestyles.org.
There is no medical support available for independents, but you're welcome to ask non-medical questions that can be answered by more experienced members. Any medical questions exclusive to your own case must be addressed to your doctor. There is no need for independents to post progress reports, though you're welcome to drop in here occasionally and let us know how you're getting on.
We are very well aware that this situation is far from ideal for independents, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information.
Essential Information About the MP - take this a little at a time!
Read, read, read... and let us know if you can't find what you need...
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Deedee
Member
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Posted: Sat Oct 18th, 2008 20:56 |
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After mediastinal surgery for biopsy, in which I was diagnosed with sarcoidosis, I started the MP within a month. It has now been 3 months. I am on 100 mg and doing OK. As the MP site predicted, my dry tight and non-productive cough became productive. It started when I was on the benacar alone. Slowly but surely the pressue and pain in my chest from the swollen lymph nodes and the cough has gotten less, but it is still there and significant and sometimes difficult. I have looked on the website to learn more about the MP productive cough, but can not find the following answers and would appreciate referral to the right place or some info:
My cough is productive and when it comes all the way up, about the size of a life-saver and always thick and white. What does that mean? Anything? Is it dead cells or bacteria? I know yellow and green is infected. This is never that color but always there (an endless suppy for "productive" cough apparently.)
It gets worse several hours after the antibiotic and I feel as if the antibiotic starts a draining from my left side. The cough can go on for many hours afterward with a lot of increased production. Have others reported similar IP?
The productive cough never entirely goes away. It has been 3 months now. Is that normal in MP?
I feels as if it is come from one side only(left) and is feels like it is in the bronchial tube and not the lung. I also have times when it feels like someone is squeezing my bronchial tube and trachea. Has someone else described something similar on the MP site that I could read?
I am taking the expectorant and cough medicine recommended on the MP site and have read the link regarding "how to manage a cough." Is there something else I have missed I could read, such as a personal report from someone that had a persistent cough after starting MP?
For pallative help, is it OK to put a warm heating pad on my chest?
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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