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christine neisel
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| Joined: | Sun Feb 10th, 2008 |
| Location: | Plano, Texas USA |
| Posts: | 48 |
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Posted: Thu Feb 21st, 2008 23:49 |
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What is the criteria for one to know if they are sensitive to light? Do you automatically buy the special glasses if you plan to start the Marshall Protocol Plan? I have had no indication that I am sensitive to light although I do know that I am sensitive to heat.
What determines the number of times you take the Benicar a day. I have been on the Benicar 40 mgs. (1 daily) for some time for blood presssure medicine.
Thanks.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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Julia
Member
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Posted: Fri Feb 22nd, 2008 14:09 |
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Hi Chris,
When you start the MP you will very likely become light-sensitive, at least for a while. Just how much or how long is impossible to predict, unfortunately. All members are required to use glasses which cut out infra-red light. Please see:
Protecting Your Eyes (contains instructions for ordering glasses, which you should do soon if you want to do the MP, as they can take a few weeks to arrive)
Light Sensitivity-Basic Information
Photosensitivity During Recovery From Th1 Inflammatory Disease.
Benicar 40mg a day is a very different thing from the MP use of it. The MP requires a minimum of 40mg every 8hrs, and preferably every 6hrs. Your doctor will probably never have prescribed it at this dosage before, but it's perfectly safe, and doesn't lower your BP any further. See Benicar-Basic Information.
I'm not sure how much you've been reading of the MP information, so I'll give you a few links to the basic stuff just in case. If you give me some idea of your symptoms I should be able to find the most relevant links... but perhaps you've already done this 
"What is the Marshall Protocol?"
Simple Explanations
Diagnostic test for the MP: D-metabolites tests
Success Stories
Bacteriality - a blog by one of our members
Please ask any further questions here at your own personal thread by hitting the reply button
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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christine neisel
Member
| Joined: | Sun Feb 10th, 2008 |
| Location: | Plano, Texas USA |
| Posts: | 48 |
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Posted: Mon Feb 25th, 2008 02:01 |
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Hi Julia,
Thanks for your information.
I was diagnoised with sarcoidosis of the chest lymph nodes (paratrachel) last April. Old x-rays in 2002 showed the chest lymph nodes to be enlarged.
Previous history was costochronditis, subclinical cushing syndrome (tumor on the adrenal gland removed in July 2006.). After six months of grand health, had stomach problems including two different labs on h-pylori, one negative and one positive. Had the two weeks of antibiotics. Second time for the h-pylori in the last six years. I think I got a ulcer as the stomach pain was a whopper and I was in the hospital several times taking demerol. I went to the hospital with stomach problems and came out with the diagnoises of sacrcoid. I do have a stomach problem in that my stomach doesn't empty on its own (gastroparesis). When I have had pain in the chest area, it will most always make the indigeston come on. Had the lung and lymph node biopsy and had almost a month of terrible chest pain, fatigue, loss of weight, weakness, etc.]
The doctor told me that I only had a Level 1 of sarcoid and that I should not be experiencing any pain. Since late May of last year, I have been doing much better. Just recently had my first flare of arthiritis in the area of the hand where the thumb meets the wrist, a squeezable lump with mild soreness. Some come and go pain in the jaw line area. Back ache has always been a part of the long standing problem.
I still have pangs of hurt in the chest area, weakness and light headedness when I exercise. I feel as long as I pamper myself, no lifting, no picking up babies, no vacuuming, no stress, I can keep a status quo, but I have things to do and places to go so would like to go on the Marshall Protocol while I am in fairly good shape.
I feel very blessed in that of all the stories of sarcoidosis, mine seems like the lesser of them. I want to be proactive and see this behind me and not waiting until the next flare comes.
Thank you for all your help.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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JRFoutin
Moderator
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 579 |
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Posted: Mon Feb 25th, 2008 02:34 |
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Christine,
You might also want to review these info sets:
Cell Wall Deficient Bacteria and the Marshall Protocol
What is the basic definition of Th1 inflammation?
How does Th1 inflammation develop? What is successive infection?
Side Topic Discussion Related to the Marshall Protocol
Which diagnostic tests do I need?
Will the Marshall Protocol treat co-infections?
Best to you Christine--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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christine neisel
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| Joined: | Sun Feb 10th, 2008 |
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Posted: Wed Feb 27th, 2008 23:11 |
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Hi Janet,
I have been reading the sites you recommended, thanks. It's amazing how it is rarely just one think causing all the problems.
I have several questions regarding light sensitivity. I made it a point today to check our my health club and it has nothing but fluorcsent lights and lots of them. Also had four huge sky lights in the cardio area. The swimming pool has less light but still some small fluorscent lights in the hot tub and steam room. I am thinking that initally I should not exerise there until I see how I am going to react to light. To test the waters on the light issue, maybe try some light after a couple of weeks on the medication?
Also wanted to know about the two 600mg of calcium I take every day for osteopenia? I will be giving up everything over the counter,except my laxatives.
Thanks for your help.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Wed Feb 27th, 2008 23:48 |
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Chris,
A specific answer on calcium is here: Do I need to take a calcium supplement to prevent osteoporosis?
The ABCs of MP CALCIUM has more links.
Somewhere along the line, you will want to test the issue of light, but maybe the time to do it is after you are sure your D levels are low to begin with. If you haven't got down to the therapeutic levels, in the first place, you aren't likely to notice much difference.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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christine neisel
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Posted: Thu Mar 6th, 2008 03:15 |
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Hi,
I received my lab results today that included the Vitamin D, 25-Hydroxy which is 25.3 ng/mL. The Vitamin D, 1,25 Dihydroxy is 43.9 pg/mL. In the last two months I have restricted my diet cutting out the Vitamin D. Other test included Absolute CD3 test at 515, Neutrophils at 75, and ACE at 83.
Hope to get it all together and get started on the MP soon.
Thanks.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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Julia
Member
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Posted: Thu Mar 6th, 2008 21:16 |
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Chris,
Please post these results in the Preliminary test results forum for analysis by a medical moderator. See What to include in your preliminary test results report. Here on this site we're strictly non-medical!
Have you managed to get a doctor willing to prescribe the MP for you?
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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christine neisel
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Posted: Fri Mar 7th, 2008 00:56 |
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Hi Julia,
Thanks, I did list my lab results on the proper site.
I hope that my doctor will give the go ahead and that I can start the plan by April. I must get pre-approval for the Benicar and that may take a few weeks.
My doctor doesn't want me to stop the allergy shots, but I plan to as I don't want anything to interfer with the success of the plan.
Thanks.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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christine neisel
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Posted: Sat Aug 9th, 2008 01:42 |
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I have all the necessary materials to start the MP. Am waiting to be admitted as a member as I would feel more comfortable to be able to correspond with the MP personnel once I have started the program. My participating doctor will prescribe the medication, but I want additional information available should I need it.
Told my primary physican that I was waiting to go on the program and briefly told her about the program. Her biggest concern seemed to be that she felt that one should be aware of getting too much potassium from the Benicar. I have not seen anything on this issue on this site.
Thanks.
Chris Neisel
____________________
Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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natalie17
Moderator
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Posted: Sat Aug 9th, 2008 02:34 |
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Hi Chris,
Welcome to the sister site of http://www.marshallprotocol.com. This is your personal thread, please continue to ask any future questions in here .
I suggest strongly encouraging your Doctor to join the Professionals' Forum - he or she will have access to any information you need there, as well as being able to correspond with moderators and staff on your behalf.
Some sources of information about hyperkalemia list ARBS (Benicar is an ARB) as causing elevated potassium without any references to confirming scientific studies.
However, in the Center for Drug Evaluation and Research Approval Package for Olemesartan (Benicar) (Application #21-286) and the Clinical Pharmacology, including the Pharmacodynamics of the drug, there is no mention of hyperkalemia. In fact, on page 4, under the pharmacodynamics in the distributed eleven page document summarizing Olmesartan (Benicar), it clearly states the following:
"Repeated administration of up to 80mg olmesartan medoxomil (Benicar) had minimal influence on aldosterone levels and no effect on serum potassium". It is also highly bound to plasma proteins (99%) and does not penetrate red blood cells where K+ is found.
Suggest reading;
My potassium is elevated. What should I do?
Potassium supplements
Also, for those affected: list of foods high in potassium to avoid.
All the 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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christine neisel
Member
| Joined: | Sun Feb 10th, 2008 |
| Location: | Plano, Texas USA |
| Posts: | 48 |
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Posted: Sat Aug 9th, 2008 19:03 |
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Hi Natalie,
Thank you for your reply, it put my mind at rest about Benicar and potassium.
Wanted to ask if the MP group have a system whereby they can estimate when one will be become a member?
At the present time, I am taking a blood pressure pill called Azor (combination of Benicar and Norvasc) for high blood pressure. Have been taking 1 Benicar 40mgs for some years for BP. Am hoping to give this a trial run for a month and see if it helps. I am still ready to do the MP as soon as possible and when I can get off the Azor.
How do I find names of those in the Dallas area who are working with the MP. I know Gene Johnson who lives in my area.
Thank you for your help.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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natalie17
Moderator
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Posted: Sun Aug 10th, 2008 06:52 |
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Wanted to ask if the MP group have a system whereby they can estimate when one will be become a member?
The study site is flooded and the moderators are having a hard time keeping up so we can give no estimates.
You may post your request for a Doctor's List here-
REQUEST FOR DOCTORS LIST (click here)
Regards,
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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Julia
Member
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Posted: Mon Sep 1st, 2008 22:04 |
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christine neisel wrote:
Hi Julia, I am interested in taking the information on Benicar called "FDA Safety Insert", to my doctor, but it contains 11 pages, what part is most important so I can not over do the number of pages?
Thanks. Chris
Hi Chris,
[Please keep all your questions here in your own thread. If you can't see it, click on the 'My Account' button at the top of the page and the link will be there.]
Pages 4, 5, 9 & 10 seem to be the most important from the Benicar insert - pages 4 & 5 show that blood pressure is not reduced further with increased dosing, and pages 9-10 say that dosage must be individualised, and high doses are well tolerated.
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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christine neisel
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Posted: Wed Sep 3rd, 2008 23:29 |
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Hi Julia,
Have the blood pressure under control now and am planning to start the MP on Monday. Sept. 8.
I am starting with 1 Benicar 40 mgs. every eight hours. What is the best way to tell if this is enough? Have been wearing my dark glasses and given up vitamin d foods months ago. Since my sarc is only level 1, I am hoping that I can do well on the MP.
Wish me good luck as I am on this flying solo. My doctor will prescribe the medication, but it's up to me to know the particulars.
If I should need to go back to the Benicar/Norsvas for my blood pressure, is that a problem with the MP?
Thanks for your help.
Chris Neisel
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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Knochen
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Posted: Thu Sep 4th, 2008 00:51 |
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If I should need to go back to the Benicar/Norsvas for my blood pressure, is that a problem with the MP?
Hi Chris,
One of the medically qualified people will have to get back to you on that one. They are very busy at the moment with the Porto Conference, so it may be a couple of days. Please be patient! 
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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P.Bear R.N.
Inactive Staff
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Posted: Thu Sep 4th, 2008 19:00 |
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Christine, The better dose of Benicar to start with would be 40mg q 6hours by mouth. If you end up needing to take Norvasc (amlodipine) for blood pressure that is fine and you should work with your doctor to adjust dose as a single type of formulation. (No combo pills like Azor). Another alternative to a calcium channel blocker(like Norvasc) would be a beta blocker.
best, P.B.
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Nothing in this site should be considered medical advice. Sorry, My private message function has been disabled and I can not read any posts. I have never been "inactive" but have been using PMs to help patients to help their physicians with care
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christine neisel
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Posted: Thu Sep 4th, 2008 21:29 |
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Thanks for your information. I am at the present time just on (1) Benicar a day for the blood pressure. If I need to incorporate anything more, will surely seek advice.
How could I find out if my doctor is registered with the MP Health Professionals? I have talked with his office and the gals aren't too swift in getting back with me. They mentioned that they had tried and was unable to get set-up. I would feel better if I knew he was registered with the Moderators. His name is A..............., D.O. in Richardson, TX.
I had originally thought that (3) Benicar a day would work for me as my level of sarcoid is only level 1. The other thing is that my insurance only pays for a (1) thirty day supply a month. If you feel that (4) is the better route, I will certainly try that.
Thanks.
Chris Neisel
[doctor's name removed for his privacy - mod.]
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Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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christine neisel
Member
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Posted: Wed Sep 10th, 2008 14:51 |
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Hi Julia,
Started the Benicar yesterday (4-times a day in a 24-hour period).
As a non-member of the MP study, I can read under "CureMyTh1, but not post, is that right?
Does the MP moderators have any general time frame from date of application until being accepted into the study?
Thanks.
Chris
____________________
Sarcoid-chest lymph nodes,no change since 2007.Slow moving stomach which causes constip.Pain under right shoulder blade when standing for any length of time for 3 years-Chirop.has not helped.Acupunct.has helped. D-25 was 27,in 4/09. 10/15/09 Vit.D is 14.
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Julia
Member
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Posted: Wed Sep 10th, 2008 15:09 |
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Chris, congratulations on getting started!
You can continue to ask non-medical questions here on CureMyTh1 on this your own thread. Any time you lose it click the My Account button and the link will be there. We will be pleased to hear of your progress.
For medical questions you must ask your doctor, who must be a member of the Professionals' Forum and can ask questions there.
On the study site MarshallProtocol.com you can read all that's essential, but not post. Phases 2&3 are available to your doctor.
The medical moderators are overwhelmed with the demand, and it's unlikely there will be more places in the study for a good while.
Please read Essential Information About the MP (Required Reading) and Marshall Protocol FAQs (Required Reading)
Happy herxing!
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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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