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acole
Member
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Posted: Sat Mar 6th, 2010 05:14 |
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Hello all
My diagnosis of Sarcoidosis in my lungs occured in 2003 following a year of persistant coughing. Prior to starting the MP I used Symbicort to control the cough from 05-09. Small patch of skin discolor tested posative for sarcoidosis in 2009. The 1" sized patch had been noticeable for the last few years and I had assumed it was a small patch of Psoriasis. Had it tested because of cancer concerns following the finding of the black spots on my lungs.
I last reported problems in lowering my D25 in a post to general questons. I appreciated the assistance in being directed to start the Benicar (Olmasartan in Canada). I'm happy to report that it worked and this is my report from Oct. 2009 to March 2010
I requested help in Sept 09 as an Aug 09 blood test reported a climb in D125 to 112 pg/ml and a D25 of 41 ng/ml. Diet alone and covering up where not lowering the D25 and a recent CT scan due to solid black spots on a chest x-ray had me very concerned. thank you to the fellow member for directing me to the page http://marshallprotocol.com/forum32/7327.html
and reminding me that I need not have a low D25 before starting phase 1.
I started the Olmasartan (Benicar) in October 09 with a D25 of 32ng/ml IP- noticeable light headed and drop in blood pressure (my doctor recomended a home blood pressure test), from 125/82 to 83/51 for a few weeks.
Nov 09 Olmasartan 40mg/6hr Minocycline 25mg/48hr D25 19.2 ng/ml IP- a return of sudden nose bleeds (from 20 years ago) for a few days and very fatigued. slept lots with time off work.
Jan 12/2010 Olmasartan 40mg/6hr Minocycline 75mg/48hr D25 16.8 ng/ml IP a few days of blood with bowel movements cleared up. This also seemed to be a return to health (Hemorrhoids) problems not experienced for 12 years.
Feb 17/2010 Olmasartan 40mg/6hr Minocycline 100mg/48hr D25 12.8 ng/ml IP still short of breath with physical excertion but I have not used Symbicort since October 09 and deep breathing does not cause cough reaction. I also am very happy to repot that a CT scan this month indicates a reversal of the solid mass found in my left lung during the CT scan of May 2009. Other densites still prevail and cause the shortness of breath. I'm praying for a reversal if I stay on the MP.
Still feeling generally fatigued and suffer from brain fog. It seems the same levels of monocycline are increasing in IP effect as the D25 declines. Does this seem reasonable?
Should I proceed to phase 2 now? If so I need instructions for the start of Modified Phase 2 for myself and my Physician.
I'm a believer in the MP!
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Sarcoidosis/lungs/skin 125D112 25D41 (Aug 09) Ph1 (Oct 09) NoIRs, covered up, 25D12 (Feb2010)
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Marysue
Moderator
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Posted: Sat Mar 6th, 2010 20:29 |
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Congratulations--it sounds like you are progressing well. And, yes, it is normal for you to experience an increase in IP as your D levels come down. The level reported in your signature line is well within the range (below 12-15) that you could expect an increase in immune activation.
Given that, you will want to be cautious in moving forward and just be aware that every increase in abx--and particularly adding zith--will increase the possibility of intolerable IPs. So make sure that you are at a tolerable level of IP before moving forward each step.
Here is the link to the Phase 2 guidelines:
http://autoimmunityresearch.org/Phase2.pdf
As you'll see in the table of contents, the information for Modified Phase 2 is on page 8.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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acole
Member
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Posted: Sun Mar 7th, 2010 03:42 |
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Thanks Marysue,
After reading the instructions for phase 2, I have two questions:
My symptoms are lung and heart related so I understand why you directed me to take the modified phase 2 prior to accomplishing phase 2. A strong IP with my breathing and heart are not something to be taken lightly.
The instructions also stated:”Healthcare Providers may want to check or recheck certain inflammatory markers such as triglycerides, creatinine, BUN, C-Reactive Protein (CRP) and alkaline phosphatase levels. The BUN, in particular, will rise because the intra-phagocytic microbiota give off nitric oxide as they are being killed. If lab results show levels of triglycerides, CRP or alkaline phosphatase, which were previously normal, have risen during Phase Two and/or Three, it is evidence of occult (hidden) Th1 inflammation, and the effectiveness of the MP.”
question 1) I ask your opinion of whether I should proceed to modified phase 2 based on a review of my blood test results to date Feb 17/2010, or stay a bit longer on Phase 1?
-triglycerides, not being tested (norms are less than 150 mg/dl (1.7 mmol/L))
-creatinine, 72 umol/L (norms are 70-120umol/L)
-(BUN) 6.1 mmol/L (norms are 2.5 – 7mmol/L)
-(CRP) C-Reactive Protein 7.1 mg/L (norms are < 5 mg/L)
-(ALP) alkaline phosphatase levels 132 U/L (norms are 48 – 138 U/L)
other measurements that are near or above normals are:
-(ACE) 109 U/L (norms are 10 – 65 U/L) Serum Angiotensin Converting Enzyme is raised in 69% of patients with Sarcoidosis. ACE is useful in monitoring Sarcoidosis and the response to therapy with Corticosteroids
-(Gamma GT) 228 U/L (norms are 10 – 58 U/L) My levels have been high since I started blood testing March 09. It was 206 U/L at the start and has reached peaks of 370 U/L in between.
Question 2) The instructions directed that "subjects in the MP clinical study cohort are posting a weekly progress": should I report weekly to this topic page or do I report weekly to my Doctor?
I am seeing my doctor this week to discuss starting phase 2 and to have my prescriptions updated, so your fast reply to my posting was really appreciated.
Sincerely, Andy Cole
Last edited on Sun Mar 7th, 2010 04:01 by acole
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Sarcoidosis/lungs/skin 125D112 25D41 (Aug 09) Ph1 (Oct 09) NoIRs, covered up, 25D12 (Feb2010)
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Sun Mar 7th, 2010 05:04 |
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Thank you for posting your lab results Andy. 
This information is helpful, but we will defer to your doctor for general review. If you would like to learn more for yourself, see http://www.labtestsonline.org.
If it were me, I would stay on Phase 1 for a little while longer, waiting for the levels of IP to come down a bit more.
Also, at the end of phase 1 is a good time to experiment a little bit. Just to find out how your IP responds to stretching out the minocycline to every 3 days (or longer) and also how it responds to taking a dose every day for a few days in a row.
Knowing these responses will be helpful when you are trying to sort out or respond to changes in IP when there are two antibiotics in the mix. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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acole
Member
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Posted: Wed Mar 10th, 2010 02:12 |
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Hi Joyful
Thanks for your opinion. I met with my Doctor today and we decided to follow your advice. I'll let you know how it goes.
Appreciatively, Andy
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Sarcoidosis/lungs/skin 125D112 25D41 (Aug 09) Ph1 (Oct 09) NoIRs, covered up, 25D12 (Feb2010)
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Wed Mar 10th, 2010 03:33 |
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Andy wrote:
"Question 2) The instructions directed that "subjects in the MP clinical study cohort are posting a weekly progress": should I report weekly to this topic page or do I report weekly to my Doctor?"
Weekly progress reports are posted by members of the study to the MP sites. (Although with Zith my own reports were every 10 days to match the cycles.)
You will have to ask your doctor how often he cares to be updated, but I suspect he only wants to review your status at appointments. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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k
Member
| Joined: | Fri Oct 19th, 2007 |
| Location: | Australia |
| Posts: | 216 |
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Posted: Thu Mar 11th, 2010 08:15 |
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I'm not sure how often you are keeping records for your own purposes (i.e. not necessarily on this site), but I would strongly recommend keeping - if at all possible - daily records. They do not need to be overly detailed.
I have found these absolutely essential for:
* Identifying patterns in herx
* keeping track of my meds (especially with brain herx)
and, importantly, seeing how much progress I've made!!!
(My doctor has not been interested in any detail. But it has been absolutely invaluable for me).
all the best,
regards, k
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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acole
Member
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Posted: Tue Mar 30th, 2010 04:50 |
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Andy's report to date March 29/2010:
Thanks to all respondents for your suggestions. I started the modified phase 2 March 13/2010 and have progressed by this posting to ½ full doses (75mg) of the Clindamycin, and back up to ½ full doses (50mg) of the Minocycline. I started the phase 2 by taking the ABX at 10:00 PM with IP that night around 2:00 AM. I was awakened with burning hot feelings in my feet and breathing restriction. An Olmasartan taken sublingually relieved symptoms within a half hour. 24 hours later similar events occurred, so I decided to start taking the Antibiotics at 9:00 PM so sleeps have returned to full nights (10 pm – 6 AM) without interruption and I deal with the IP during the next day. Thanks to ‘K’ for your suggestion of a diary. I have been using a daily “pocket” diary since I started the medications in order to organize and predict stages of increased ABX and record results. I too recommend it for all using the MP.
My blood test for Mar 17 arrived today and I was disappointed to see a slight rise in 24D to 15 ng/ml. I was on a road trip just prior to testing, so I suspect diet errors.
Health blessings to you all,
Andy
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Sarcoidosis/lungs/skin 125D112 25D41 (Aug 09) Ph1 (Oct 09) NoIRs, covered up, 25D12 (Feb2010)
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