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Yomi
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| Joined: | Tue Jul 8th, 2008 |
| Location: | Austin, Texas USA |
| Posts: | 17 |
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Posted: Mon Jul 28th, 2008 04:27 |
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Hello,
I was diagnosed with Sarcoidodis in 2001. I have had manifestaions obviously in the lungs but later in the eyes (uveitis) the skin (granuoma) and most recently in the nervous system (neuropathy). I haven't had any consistent pain, fortunately, during my seven year bout with the disease just during the flare ups (uveitis, none with the neuropathy). I am hoping to start the MP once I've attended my appt with a participating Dr. at the end of August.
The neuropathy manifestation took place on June 8th which caused slight paralysis on my right side and therefore five days in the hospital. I was given 250 mgs of prednisone 3 times a day for three days and was sent home to be weaned off the prednisone starting with 90 mgs for three days, 80 mgs for the following three days, etc til I got down to 5 mgs. I have been off prednisone for about three and half weeks now. I have been attending physical therapy since my discharge three times a week with significant improvements (now able to walk without any assistance but with a slight limp) and will continue for the next four weeks.
My question is has anyone known/spoken/corresponded with anyone that had neuropathy before starting the MP and then started the MP and have a neuropathy "flare up"? I am aware they are risks involved with MP I just want to be prepared.
Any information you can provide would be greatly appreciated.
Sincerely,
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Julia
Advocate (on leave)
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Posted: Mon Jul 28th, 2008 12:29 |
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Hi Yomi,
I would say most of us have had neuro symptoms of one kind and another, though many are milder than yours. And most of us have had varying degrees of neuro flares during the MP.
But the great thing about the MP is that immunopathology (IP) can be controlled by adjusting the doses and timing of the medications. The aim is to keep IP tolerable - otherwise you're in danger of permanent damage, not to mention having a very uncomfortable time!
On neuropathy:
Will the MP treat paresthesia and neuropathy?
Neuropathy and the MP
What is a neuro immunopathology?
On the MP:
"What is the Marshall Protocol?"
Simple Explanations
Papers for Physicians
D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
Please ask any further questions here at your own personal thread.
Julia 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Yomi
Member
| Joined: | Tue Jul 8th, 2008 |
| Location: | Austin, Texas USA |
| Posts: | 17 |
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Posted: Mon Jul 28th, 2008 18:09 |
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Thanks Julia. I appreciate the information. I am currently a member on the Marshall Protocol website (luckily I joined before they stopped accepting new members) but was having hard time finding a doctor to administer the protocol. I am waiting to get my D metabolites done before I request permission to start posting on the website and giving a signature line.
I give a follow up once I have seen the Dr. on the 8/27.
Thanks again
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Julia
Advocate (on leave)
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Posted: Mon Jul 28th, 2008 18:50 |
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Yomi,
Due to the huge upsurge in numbers wanting to join the MP study, I'm afraid being a member of the MP site no longer counts. Those who have not started posting a Progress Report in the Benicar forum need to apply to get on the waiting list in case a vacancy arises. See MP Memberships Temporarily Closed for instructions.
But when you find a doctor, you can still do the MP through him/her joining the private Professionals' Forum, which is always open to doctors.
Julia
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Yomi
Member
| Joined: | Tue Jul 8th, 2008 |
| Location: | Austin, Texas USA |
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Posted: Mon Jul 28th, 2008 19:42 |
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Thanks again for the info. I'll be happy just to be able to start the protocol. I'll continue to read through the MP webiste.
Thanks 
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Yomi
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| Joined: | Tue Jul 8th, 2008 |
| Location: | Austin, Texas USA |
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Posted: Mon Aug 11th, 2008 17:15 |
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Hello,
My question is in regards to the medications needed for the MP. Are the medications covered under insurance drug benefits? If not, what are the range of costs?
Any info would be appreciated?
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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suecat
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| Joined: | Tue Feb 5th, 2008 |
| Location: | Austin, Texas USA |
| Posts: | 58 |
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Posted: Mon Aug 11th, 2008 20:14 |
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Hi Yomi,
I'm moving to Austin at month's end and I can give you some leads to doctor.
Please send me an e-mail.
sue
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FM/CFS, PH1 April08, ,(3/08--25D-55,7/08--25D 18) Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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Yomi
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| Joined: | Tue Jul 8th, 2008 |
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Posted: Tue Aug 26th, 2008 04:39 |
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Hello,
I just wanted to be clear on the process. I can apply to become accepted to the study on the Marshall Protocol website by submitting an email to marshallprotocol 2@yahoo.com once I have found a doctor that agrees to order the D-metabolite tests, monitor my condition and when there is a vacancy. Is this correct?
If there isn't a vacancy, the only way to get to phase two and three would be through my monitoring physician?
Please confirm.
Thanks
Yomi
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Julia
Advocate (on leave)
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Posted: Tue Aug 26th, 2008 09:26 |
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Yomi,
That is correct. Doctors are always accepted as members of the Professionals' Forum, and have access to Phases 2/3 from the start.
Sorry we seem to have missed your insurance question. See How To Obtain Insurance Benefit for Full Dose of Benicar and this discussion on Insurance.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Yomi
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Posted: Tue Aug 26th, 2008 15:01 |
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Julia,
Thank you for the confirmation. As you probably know things can be clear as mud at times with the illness. Hopefully I'll be one of the lucky ones to gain full access to the website. Still trying to find a Dr. that will agree to the MP. I'll be posting once I find a willing Dr.
Thanks again
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Yomi
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Posted: Tue Sep 9th, 2008 20:44 |
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Hello,
I just got back from my Dr who agreed to put me on the MP (he shoots..he scores!! Yes!! ). While I did have some lab work done I'll be returning to have the 1,25-D test done tomrrow afternoon prior to starting the inital Benicar dosage. My Dr. did have some concerns about the high blood sugar and high chlosterol from my lab results. Is there anything I can download and fax to him that will explain:
1. Why liver enzymes are elevated?
2. Why blood sugar is high?
3. Why cholesterol is high?
My 25-D level is 12ng/ml. I know this doesn't mean much until I receive the numbers for my 1,25-D levels. I will be posting the results once I get the results next week.
Once again any and all info will be appreciated.
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Tue Sep 9th, 2008 23:01 |
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Yomi,
You may want to read:
What do my lab tests mean?
Very helpful information about a number of tests.
Your doctor may want to look at the other test markers and focus on popular "other indicators you are sick" that occur when pathogens push the rest of your system in to disarray. However, for the top level curative protocol, it is important to focus on the D results as primary. That is the detail that science has shown to be the most effective place to look first.
The other test results may indicate some attention to specific weakened processes and organs is important as you begin the MP, so they are of value in that regard but they are secondary. Doctors who are members of the study site for medical professionals can ask specific questions for further clarification.
You might be able to assure your doctor you will be attending to some test result issues with MP-appropriate dietary helps, too.
Best to you Yomi--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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Yomi
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Posted: Wed Sep 10th, 2008 07:51 |
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Thank you for the info Janet. This does explain a lot. I will forward this info to my Doctor.
Yomi
____________________
Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Yomi
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Posted: Tue Sep 16th, 2008 17:17 |
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Hello,
I started the Benicar Blockade on 9/11 and the only symptoms I've experienced is a headache and increased visual floaters. I have not experienced any visual light sensitivity.
1. Is the visual light sensitivity something that normally starts when I start to kill the bacteria with minocycline or does this just vary from patient to patient?
2. Being that I have experienced exacerbated symptoms only on the first day..6 days ago....should I start the minocycline sooner (before I complete putting the 2 week Benicar blockade in place)?
Thank you
Yomi
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Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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natalie17
Advocate
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Posted: Wed Sep 17th, 2008 03:42 |
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Hi Yomi,
Be aware that the headache and increased visual floaters could be a result of not protecting your eyes adequately. I don't feel that lights around me are bright, but I do feel worse if I don't protect myself from them.
The light sensitivity is part of the healing process, and will wax and wane throughout the MP .. As you recover you will get to the point where you can't see anything through those dark glasses any more.
How to Avoid Sunlight and Bright Lights.
It's usually reccommended you remain on benicar a alone a week or two until symptoms stabilise. See;
When should I start minocycline?
What should I know about Minocycline?
.. to discuss with your Doctor.
Take care,
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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Yomi
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Posted: Wed Sep 17th, 2008 14:29 |
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Thank you Natalie. I forgot to mention the headache occurred only on the first day of beginning blockade. I havent had a headache since then. The visual floaters do continue and I will start wearing my NOIRs. I guess I was just expecting the light sensitivity to be the initial IP symptom from what I'd read. But then again I havent started the minocycline so I'm sure there's more to come.
Thanks again.
Yomi
____________________
Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Yomi
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Posted: Fri Sep 26th, 2008 20:38 |
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Hello,
I received the results of my 1,25D test (60pg/ml) and my 25D test result is 12ng/ml. Can anyone give a breakdown of my test results?
Yomi
____________________
Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Julia
Advocate (on leave)
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Posted: Fri Sep 26th, 2008 21:49 |
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Yomi, please follow the instructions in How to post your D-metabolites tests results - thanks.
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Yomi
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Posted: Mon Oct 13th, 2008 22:58 |
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Hello,
I have started the MP and I am currently taken 40mgs of Benicar every 6 hrs and 50 mgs of minocycline every 48 hrs. I took 25 mgs of mino every 48 hrs three times and while I experienced some itching, mild cramping and mild nausea, I think I increased my dosage to the 50 mg dosage every 48hrs rather quickly. I took my first 50 mg dosage on friday, 10/10 and the second yesterday, 10/12. I seemed to be herxing the first day of taking the mino but not feeling anything the second day (the day in between dosages). The herx yesterday seemed to be minimal compared what I have read and I think I might be ready to ramp up to 75 mgs of mino by the end of this week at the latest. Is this usual? Is there anything I might be doing wrong? My Vitamin D diet is definitely in check and I am avoiding sunlight diligently. Do I need to recheck my 25D to make sure its still under 12ng/ml or am I worrying needlessly? My Vitamin test results are listed above.
Any info would be appreciated,
Thanks
Yomi
____________________
Sarcoid via lung biopsy 9/2001 25D-12, 1,25D-60..Ph1-9/12/08 Benicar -Q6..low lux setting in home...NOIRs..avoiding sunlight and vitamin D
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Julia
Advocate (on leave)
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Posted: Mon Oct 13th, 2008 23:46 |
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| Yomi, please do post your test results in the results forum for our medical team to assess. I'm not a medic, but I'm pretty sure your 1,25-D is very high and you may need to go slowly with the MP in case of hidden inflammation in vital organs. But do get expert advice.
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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