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maddoj
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Posted: Mon May 4th, 2009 15:12 |
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This is my 1st posting. I was diagnosed with Sarcoidosis February 2009. I started showing symptoms in August of 2008 after being on Micardis for a short time. Shortness of breath and high BP sent me to Cleveland Clinic and that’s where I was diagnosed with Sarcoidosis. My wife found out about the MP and we decided I should pursue this course of action. It was hard finding a doctor to write the prescription for the MP meds. The pulmonary Doctor looked at the biopsy results and my chest ex-ray and determined I had spotty traces of granuloma’s on my lungs. The doctor prescribed Bactrim, Prednisone, Methotrexate, and Fosamax for a three month period. I still have the meds in a bag on my desk.
I started the MP Friday 5/1/09 evening beginning with 40mg of Benicar every 6 hours. I began taking the mino at 6am Saturday morning 5/2/2009. keeping a daily log of all herxing. BP 137/75 5/4/09
Low energy: 3
Fatigue: 3
Muscle weakness: 1
Muscle pain: 8
Chest pain: 6
Sinus pain/inflammation: 3
Stomach pain/cramps: 6
Photosensitivity: 7
Sleep disturbance: 1
low grade fever 0
Dizziness: 0
Itching: 7
Headache: 6
After taking the Benicar my energy level is great. All herxing was manageable.
Started my second dose of 25mg Mino this am. 5/4/09. no side effects at this time. Regular BP meds.
Thanks Mike
Sarcoidosis/lungs (lung biopsy) 25D9 Ph1May 2 NoIRs limited outings covered Mino 25 mg started 5/2/09
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bobsyouruncle
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Posted: Mon May 4th, 2009 15:25 |
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Hi Mike
Not sure if I am understanding you correctly, but we're meant to give the Benicar a few weeks to settle as it can play hell with hormones and we need to adjust to it first. Did you start the Benicar on the 1st of May and Mino the following day?
Good to have another Sarcy with us!
Thanks
Bob
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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maddoj
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Posted: Mon May 4th, 2009 16:13 |
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| Yes I did start the Benicar the 1st of May and the Mino the next morning.
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bobsyouruncle
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Posted: Mon May 4th, 2009 17:14 |
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Hi Mike
I am not sure what to say, so I'll leave it up to the more experienced advocates. I see you have level 7 photosensitivity and itching. I'd worry that you could get run away herxing. I also noticed in your other posts that you are on quite a few blood pressure meds (saw Dr Marshalls post to you in this respect). It takes a while for a true VDR blockade to be in place, which will give you the full benefit of the Mino and control the IP. However, some people experience hormonal rebalancing during the initial period on the Benicar. I'd worry that this rebalancing might have some impact on your BP or the delicate balance in your body with all the herx.
Have a read of this ... especially the sections on hormones
http://marshallprotocol.com/forum32/1875.html
But you seem to be coping.
Sorry to ask so many questions, just concerned about you. Did you start the Mino early for a reason?
Thanks
Bob
Last edited on Mon May 4th, 2009 17:15 by bobsyouruncle
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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maddoj
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Posted: Mon May 4th, 2009 17:27 |
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| Maybe the itching wasn't a 7 but i did have sensitivity to light the 1st day. I have my Noirs and everything is fine. I don't like the sun anyway so I stay out of it. Since I was on blood pressure meds already I didn't think I needed to start the Benicar for a week or two anyway. I was on something similar before and ARB's don't work to control my blood pressure. That's why I started the Mino and Benicar together. The benicar had no effect on my blood pressure at all.
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maddoj
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Posted: Mon May 4th, 2009 18:24 |
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I read different posts and some people didn't have problems with Herxing early on. I believe I got the sarcoidosis last year in August and I may not have a lot of bacteria to die off. The blood pressure meds I'm on I got straight with the Pharmacy and my doctor. I have noticed a difference with my energy level got better when I got off the Losartan and went to an ace inhibitor. I read a post about someone having a good reaction to the ace inhibitor. http://www.medscape.com/viewarticle/562927
interesting reading...
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Knochen
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Posted: Mon May 4th, 2009 18:55 |
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That's why I started the Mino and Benicar together. The benicar had no effect on my blood pressure at all.
Stop right there. BP has nothing to do with the VDR blockade you are trying to establish with Benicar. You are not following the recommended procedures by taking mino at the beginning and are putting yourself at risk. Go back and read the Phase 1 document and follow it exactly. That document is the result of much emperical observation and is backed by well proven theory, so don't take it lightly.
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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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maddoj
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Posted: Mon May 4th, 2009 19:33 |
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| No problem..
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marion villa
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Posted: Tue May 5th, 2009 22:45 |
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why you do things like that? there are especific instructions about how the MP must be done. that includes to take the benicar first, avoid D food and light , to WAIT and later to take mino etc.
The people who made this protocol have been years working and frying their brains to give us a safe and effective treatment so we, ill people, can be cured.
They KNOW and we DONT.
so please, if you are going to try the MP do it exactly as it is designed, or later, when you feel worse or get dangerous symptoms, dont blame in the treatment . but yourself
sorry if I´m being rude.
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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Barney
Moderator
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Posted: Tue May 5th, 2009 23:10 |
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Hello Maddoj,
Here are links for you to read, study and watch, please do so and stop the mino now.
Here is some homework for you..please watch the 2 videos and print out the new Phase 1 document since it has lots of new MP info and you can read and reread at your leisure.
The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, here is a link:
[size=http://AutoimmunityResearch.org/phase1.pdf]
I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.
During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
[size=http://vimeo.com/4293599]
In Prague I also summarized the Science underlying that therapy. The HD video is at [size=http://vimeo.com/4307469]
http://autoimmunityresearch.or/ER.pdf
The ER pdf is one that you will print out, keep a copy on your person, copy in your vehicle, copy in your home for your family. It is instructions for the hospital personnel and doctors to follow should you ever need hospitalization or ER treatment, which we sincerely hope you do not need. They are not very knowledgeable of the MP there.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Last edited on Tue May 5th, 2009 23:10 by Barney
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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maddoj
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Posted: Wed Sep 16th, 2009 19:50 |
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I decided to post my recent progress with the MP after talking to Freddie Ash. I'm just starting Phase 3. My doctor has been aware of where I stand with the MP. Phase two wasn't much of a problem for me except when I had a bout with the sun. I had flu like symptoms twice. I got the results back from the blood test before I started the MP and my D-125 was 34 and my D 25 was 13. I made sure I stayed away from foods with vitamin D. I'm awaiting my results from before I began Phase 2. The doctor is always busy and hard to get information from him. I normally have muscule pains while on the medication in Phase 2. My energy level was pretty low also. It's a little better today. I'm not sure if the cough is from the Ace inhibitor and Benicar or from the Sarc. I'm a black male and they make us cough anyway. I have had minor headaches and frequent urination while on mino and zith. I also have frequent blood tests and the only thing we found was my potasium level was low. I take something for that and everything else is fine. I have current logs on my medication dosing. My doctor has the very 1st one. I will try to get a copy. I haven't slept very well since I had this TH1 disease. I was wondering if I could take something mild to help me sleep. I also just started Phase 3 and I'm following it to the letter. I will ramp up Clindy again tonight. I cannot take the meds until I get home in the evenings so I can stay in and not be exposed to the sun. I also had a CT scan but I won't know the results until tomorrow. I don't feel there has been much change but my wife and the doctor wanted to see what my lungs look like. I need to get the CT scan from Cleveland Clinic to make a comparison. Looking at the chart I will explain what problems I have with the meds: Muscle=4
chest pain=6 Dizziness=3 Sleep disturbance=5 Fatigue=4 headache=4 I do have intermittent headaches but they tend to go away most of the time. I will post again in a week.
Sarcoidosis/lungs (lung biopsy) 25D9 Ph1May 2 NoIRs limited outings covered Mino 25 mg started 5/2/09
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jcwat101
Research Staff
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Posted: Mon Sep 21st, 2009 03:21 |
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Brand name Valium is what Dr. Marshall thinks is best to use for insomnia if one really needs something. But of course, it is best to not use it too much.
He also advocates not worrying too much if one's sleep schedule isn't like other people's (of course that is a problem if one works).
If your sleep problems are worse when IP is strong, you might want to adjust your MP meds to help reduce insomnia (usually either increasing Benicar or lowering antibiotics).
Always err on the side of caution with regard to increasing the antibiotics. It is best to not ramp up the dosage until IP is minimal at the current dosage.
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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maddoj
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Posted: Mon Sep 21st, 2009 12:44 |
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Thanks for the advise. I have been taking Phase 3 rather well. I have a little headaches that disappear and more muscle aches than normal. but otherwise I'm doing ok.
Sarcoidosis/lungs (lung biopsy) 25D9 Ph1May 2 NoIRs limited outings covered Mino 25 mg started 5/2/09
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maddoj
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Posted: Mon Sep 21st, 2009 16:39 |
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I'm very curious why my coughing has eased up since being in Phase 3? I still have some coughing because I'm on an ace inhibitor and Benicar.Is the medication actually working on the bacteria in my lungs? Has anyone experienced this at all?
Sarcoidosis/lungs (lung biopsy) 25D9 Ph1May 2 NoIRs limited outings covered Mino 25 mg started 5/2/09
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Jon Paul Jones
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Posted: Mon Sep 21st, 2009 20:52 |
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| You started the MP on May 1, 2009 and you're already in phase 3? That's so fast that you're risking problems. Barney will have better explanation of the risks of going too fast, but I thought I would point it out.
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depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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jcwat101
Research Staff
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Posted: Mon Sep 21st, 2009 20:55 |
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We are having trouble keeping up with posts due to not enough volunteers.
Why don't you do a search here in the KB? Home [Marshall Protocol Knowledge Base]
I suggest you search "coughing" and "hypertension" (in case you want to try something other than an ACE inhibitor)
There is also the ABCs of the MP link MARSHALL PROTOCOL FAQs Easy Finder & the ABC of MP - Marshall Protocol FAQs (R to search through if the article above is not adequate.
And one can also search the site as a whole using the search function or the search at http://curemyTh1.org ).
If you can't find the answer, then ask again on whatever part is still not clear.
Thanks 
Joyce Waterhouse
PS More reading on the site will probably help you and may help others eventually, as you may gain enough knowledge to join in our efforts to help people on the sites. Anyone who can help volunteer will be greatly appreciated. This is a group effort You can contact me privately if you answer a post and want someone to check your answer.
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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jcwat101
Research Staff
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Posted: Mon Sep 21st, 2009 21:10 |
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It is best to be very cautious with regard to dosages of antibiotics, particularly in Phase 3.
When did you last take antibiotics and what were the dosages?
Joyce Waterhouse
For more reading see this recent topic thread by Dr. Marshall: NOTICE - Please read the new ... guidance. Direct links to latest Guidelines: http://AutoimmunityResearch.org/Phase1.pdf and http://AutoimmunityResearch.org/Phase2.pdf
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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maddoj
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Posted: Tue Sep 22nd, 2009 15:26 |
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| I realize I will be in Phase three for quite sometime now. I had no problem with Phase 1 and 2. I followed the steps to the letter and prolonged stage two for a while just repeating the cycles. I didn't get sarcoidosis until last year August when I was on Micardis. I worked out everyday running on the treadmill about 30 minutes a day until one day I couldn't run for two minutes without being tired. After watching one of Dr Marshall's lectures I realized Micardis wasn't a good arb to be taking. I was off of it way before then but the damage was done I probaly breathed in a bacteria and thats where I am now. I started Phase 3 9/11 and used 31 mgs of Zith 25mg of mino and 31mg or 1/4 of Clindy. I progressed up to 125mg of Clindy 9/20. I just started .63 of zith 50mg of mino and the whole 125mg of Clindy on Monday the 21st. That was the 10th day. No Herxing except for my usual muscle pain mild headache, blood pressure spike sometimes and insomnia. I'll stay on this for a week or two. But I'm very surprised that through these Phases I haven't had much Herxing.
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maddoj
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Posted: Tue Sep 22nd, 2009 15:38 |
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| Thanks i hope to be at the stage someday. I have confidence the MP will work. I don't have vision problems anymore and I'm taking hills a little better. Everything is a hill here. I cannot walk anywhere without it being a hill. And the sun is a real problem because we get over 300+ days of sun in Bermuda. Someone was saying to me that I should change Blood pressure meds. Dr Marshall wrote me and stated the desease is driving my blood pressure. I believe him. Also I tried numerous ARB's and other blood pressure neds and the Lotrel (ace inhibitor + amlodipine) works well I'll deal with the cough. Also ARB's are a modified version of the ace inhibitor. You will cough with those also. I have read lot about blood pressure meds. For now I will stick with Lotrel it works for me my blood pressure was tested at the doctors office last week and t was 130/78.. I can live with that. The Cardiologist @ Cleveland Clinic prescribed my blood pressure meds. Plus I take the Benicar every 6 hrs. I bet others have this cough that take Benicar.
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maddoj
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Posted: Tue Sep 22nd, 2009 15:45 |
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| I know my body and I'm blessed to get sarcoidosis last August. I noticed most people have had it for quite sometime and have been on the Prednisone and that didn't help at all. I found out about the MP before I took Prednisone and methotrexate. I will continue to follow the program because I know I will be in this Phase over a year before anything happens to clear my lung problems.
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