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JohnP
Member in Phase 3
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Posted: Mon Mar 24th, 2008 12:17 |
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Test results here:http://www.marshallprotocol.com/forum22/11577.html
Benicar Only here: http://www.marshallprotocol.com/view_topic.php?id=11498&forum_id=19&jump_to=141828#p141828
MP meds:
40 mg Benicar q8h, Started 25 mg Minocycline qod at 7 PM 3/20/08
Non-MP palliative med use:
Tylenol for pain, headache
Natural Light Exposure: 4 hrs Doctors visit, Optician, Drug store,Church, Easter Dinner. Wearing NoIR's and covering up. Don't see any direct connections between herxing and sun exposure. Will avoid sun completely this week to clarify.
Symptoms:
Headaches (2), Fatigue (6), Joint pain (2),foggy brain (2), Sleeplessness (0), Paranoia(4), Irratibility(5), Nausea(5), weakness in my legs(2)
Comments: Experienced heart palpatations and some dizzyness about 13 hours after taking Mino. Chewed 20 mg Benicar and placed under tongue. This cleared herxing. Similiar experience about 2 hours later, repeated 20 mg Benicar under tongue with same results. Realized that the palpatations were starting after finishing a large mug of hot black (Red Rose) tea. Will start to cut back on tea. Started experiencing fatigue to the point of narcolepsy.
Second dose of Mino 25 mg and biggest issue is fatigue and falling asleep. No more heart palpatations even after tea. Will move to 50 mg Mino after next 25 mg dose tonight.
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Mar 25th, 2008 19:22 |
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Thanks for letting us know you have started minocycline. You are reacting as expected and you have taken the right actions by taking an extra dose of Benicar to dampen intolerable symptoms. 
Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding natural light and vitamin D, getting adequate rest, pacing activities, eating well, using palliative meds appropriately and managing the immune response by adjusting Benicar and minocycline.
It may take a week or two to feel the effects of each new minocycline dose level. Until you know, it is best to err on the side of caution. Stay at each dose level for 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
An increase in any symptom that correlates with MP therapy is due to immunopathology. These symptoms can be controlled by adjusting MP medications and using palliative meds as needed.
Let us know how it goes.........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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JohnP
Member in Phase 3
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Posted: Sun Mar 30th, 2008 13:16 |
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MP meds:
40 mg Benicar q8h, Started 50 mg Minocycline qod 3/26/08
Non-MP palliative med use: Tylenol for pain, headache, Cortisone 10 cream, Benadryl Allergy
Natural Light Exposure: 40 minutes yesterday driving to and from pharmacy. Find that decreased sunlight really decreased irritability and paranoia (or, those people after me just went away!) I work on a computer 8-10 hours a day and find keeping NoIRs on really helps.
Symptoms:
Headaches (2), Fatigue (6), Joint pain (2),foggy brain (4), Insomnia (7), Paranoia(.5), Irritability(1), Nausea(5), weakness in my legs(2)
Comments: Find I get the strongest Herxing about 12 - 24 hours after taking Mino. 20 mg Benicar sublinqually does the trick every time
I plan to up the Mino. to 75 mg on Apr 3rd if the herxing continues to remain steady.
Thanks Meg for your assistance. I have read all the information that you suggested and it is all very helpful.
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Mar 30th, 2008 19:37 |
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John, you are managing well. It's good you are correlating light exposure with symptoms and taking appropriate measures.
If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust mino:
-reduce the dose first (lowest dose is 25mg)
-extend the schedule to every third or fourth day
-take an extra dose of 25mg (or 50mg if used to a higher dose)
-discontinue until symptoms settle
-take low dose, high frequency mino (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg)
When uncertain what to do when trying to reduce symptoms, it is best to first try reducing the mino dose and/or delaying the next dose before trying an extra dose or frequent mino dosing.
Keep up the good work.....
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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JohnP
Member in Phase 3
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Posted: Sun Apr 6th, 2008 12:31 |
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MP meds: 40 mg Benicar q8h, Started 75 mg Minocycline qod starting on 4/2/08
Non-MP palliative med use: Taking 2 Tylenol PM for insomnia
Natural Light Exposure: 80 minutes driving, covered up. I am finding that the NoIR 10's are now to dark to be able to read anything in low lux conditions as of 3 days ago. I will be ordering NoIR 40's.
Symptoms: Headaches (3), Fatigue (6), Joint pain (1),foggy brain (3), Insomnia (1) Irritability(1), Nausea(1), sharp body pains, upper back and upper arms(3)
Comments: I plan to up the Mino. to 100 mg on Apr 9th if the herxing remains steady, as it has.
My joy at finally understanding why I have been like I have been for the last 15+ years is indescribable. To know that I may be cured of that is even greater. My heartfelt thanks to you Meg and to all who are working on the MP.
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Offline
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Posted: Sun Apr 6th, 2008 16:13 |
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Thanks for checking in John.
Good to see you are managing sxs well. May be a good idea to wait another week to ramp Mino, sometimes take 2 weeks to kick in. Remember slow and steady wins this race.  Increasing Tip and symptoms
In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) to see if this dosing has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit.
You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Keep up the nice work.
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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JohnP
Member in Phase 3
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Posted: Sun Apr 13th, 2008 11:36 |
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Benicar q8h, Started 75 mg q72h Minocycline on 4/9
Non-MP palliative med use: Taking 2 Tylenol PM for insomnia
Natural Light Exposure: 3 hours driving, covered up.
Symptoms: Headaches (4), Fatigue (), Joint pain (1),foggy brain (3), Insomnia (1) Irritability(1), Nausea(1), sharp body pains, upper arms(3), Teeth Sensitivity(2)
Comments: Started testing with Mino, currently taking every 72 hours. After the first cycle, herxing does appear to be stronger after 48 hours. Will know more after a couple more cycles.
Good work.Noted
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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JohnP
Member in Phase 3
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Posted: Sun Apr 20th, 2008 12:54 |
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Benicar q8h, Started 75 mg q72h Minocycline on 4/9
Non-MP palliative med use: Taking 2 Tylenol PM for insomnia
Natural Light Exposure: 90 minutes driving, covered up.
Symptoms: Headaches (4), Fatigue (5), Joint pain (4),foggy brain (3), Insomnia (1) Irritability(1), Nausea(4), sharp body pains, upper arms(3), Teeth Sensitivity(2), facial numbness(1),Tinnititus(3), feeling hyper for short periods(4), Dyslexia, which I suffered as a child(3)
Comments: Started testing with Mino, currently taking every 12 hours. Herxing is strongest in the last 12 hours of 72. Apr. 18 started q12h 50 mg Mino. when herxing strong to test pallative effect. It did reduce herxing, but not as well as 40mg of benicar can. Going to increase to 100 mg mino on Apr. 22
Plan to start weaning off Tylenol PM
Last edited on Sun Apr 20th, 2008 12:55 by JohnP
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
| Status: |
Offline
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Posted: Sun Apr 20th, 2008 15:17 |
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John, thanks for checking in.
Sounds like you are managing sxs well. Your insomnia sxs is not uncommon and here are a couple of links that may help.
INSOMNIA post
I have insomnia and fatigue. What should I do?
Continue all supportive measures...avoidance of sun/light ingested Vit D, good nutrition and hydration and....be sure to get plenty of rest.
Keep up the nice work.
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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JohnP
Member in Phase 3
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Posted: Sun Apr 27th, 2008 12:18 |
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Benicar q8h, Started 100 mg q48h Minocycline on 4/22
Non-MP palliative med use: Taking 2 Tylenol PM for insomnia
Natural Light Exposure: 30 minutes driving, covered up.
Symptoms: Headaches (1), Fatigue (5), Joint pain (4),foggy brain (1), Insomnia (1) Irritability(1), Nausea(1), sharp body pains, upper arms(5), Teeth Sensitivity(2), Tinnitus(3), Dyslexia, which I suffered as a child(3)
Comments: I am starting to see improvement in my eye's sensitivities to light and brain fog. Received my NoIR's 40% and found that they are to dark to be able to read in a low lux room. Also starting to have more energy in the morning. At 100 mg mino, most of the herxing involves upper body pain. It is interesting how the different doses seem to affect different areas of the body for me. One exception is my upper left arm, which experiences short, very sharp pains when I move it fast or the wrong way. This started right after I started the Benicar. Could be the site of a past immunization....
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 901 |
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Posted: Sun Apr 27th, 2008 18:04 |
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Hello John,
Please indicate in your report each time how much Benicar you are taking...if you are taking 40mg then......Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP.
Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic.
You can request your questionnaire from me here at the site via Private message.
Thanks, Jeannine
PS...You are doing a great job
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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JohnP
Member in Phase 3
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Posted: Sun Apr 27th, 2008 18:14 |
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| I am taking 40 mg q8h. I will request the questionnaire and send it to you. Thanks for all your encouragement!!
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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JohnP
Member in Phase 3
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Posted: Tue Sep 23rd, 2008 14:49 |
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I started taking Benicar 171 days ago. I was first diagnosed with MCS while in the Air Force in the early 80's. I would get headaches and feel ill when exposed to chemicals that had a fragrance component. Exposure would make me very irritable and tired, with brain fog. In 1995 I was diagnosed with Sarcoidosis of the lungs, after a short period of extreme fatigue, anemia and brain fog. The Iga kidney disease was then diagnosed in 2000 by a biopsy of my kidneys. I was put on prednisone for all of these which provided some relief from the fatigue, but never any long term healing.
In October 2007 my Sarc was acting up and I was struggling just to keep working when I came across the Marshall Protocol and started reading. The many reports I read that mirrored my experience and gave me hope that this was the real deal. I had spent a lot of time being angry at my own body for failing me, knowing that there was something wrong with me. Just understanding what had been causing this illness was huge.
Since starting the MP, I have experienced both good and bad. I developed sensitivity to light, but it only lasted 2 months, and I found I had to increase the amount of light around me to be able to see. There have been periods of extreme fatigue and times when I have been more alert and clear of mind then I remember being in many years. Insomnia has always been an issue, and has been worse at times, but I have had a few nights of real solid sleep. The real milestone has been the resolution of the MCS. I no longer react to chemical fragrances. I can go to public places. This is truly remarkable, and If this is all that gets better, I would be happy, but I know there is more to come.
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Sarcoidosis MCS IgA nephropathy 125D30 25D14 06/08 25D 11 10/08 25D 11 Ph1Mar08 Ph2May08 Ph3Nov08 Tylenol NoIRs limited outings covered up, work in lo lux home
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