 |
| Author | Post |
|---|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Jun 16th, 2008 06:22 |
|
Benicar posts
MP meds: Benicar 40 mg Q6h; 25 mg Minocin alternate days.
Non-MP palliative med use: Elavil, Ambien, vicodin as needed
Light: Low lux home. Outside covered, sunscreen, Noirs, hat. Several shopping trips in town.
Symptoms:
Excessive need for sleep -10
Joint pain minimal when not experiencing IP 0-1
IP still brings neck vertabrae and spine up above a 5.
Neck - 6
Rib cage - 4
wrists - 1
knees - 1
hands -0
Hemorrhoidal tissue IP starting to decrease - 5
Sore throat (IP related) 4
Comments: Occasional dizzyness but expected and tolerable. Photosensitivity has never been high on MP, but is lessening. (It was a lot higher on AP.) I am having trouble seeing my tv and computer with 40% Noirs. Today is one of the best days yet. I swam laps in an 80 degree indoor pool and for the first time since Sept. had no significant pain other than the IP in my neck. What a joyous experience! (In December I could not tolerate the pressure of the water on my body to get in a warm therapy pool and I had trouble walking, 3/4 of my joints and muscles were in above 10 pain.) I am on summer break and can sleep a lot, so I am sleeping 12 hours. I notice an increase of pain a couple of hours after a mino dose for a few hours then again 24-48 hours later. My throat never developed back into a full blown strep throat and my son is recovering from strep throat on Clindy.
Plan: Stay at 25 mg until all IP is minimal through three Mino doses, then move to 50 mg.
Questions: Is this plan okay?
Last edited on Mon Jun 16th, 2008 07:00 by Michele MBK
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Mon Jun 16th, 2008 06:38 |
|
Thanks for letting us know you have started minocycline. See What should I know about Minocycline? Please list your dose and schedule of mino at the top of each report.
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.
Be sure to read other progress reports on your MP journey. They will help you learn how to report, how to manage immunopathology and sometimes you will discover the answer to a question you forgot to ask.
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. It is best to err on the side of caution and stay at each dose level for 3-4 doses to make sure symptoms are tolerable. Don't ramp up until you are able to tolerate a symptom increase unless experience tells you that an increase would dampen intolerable symptoms. See When to increase antibiotics
An increase in any symptom that correlates with MP therapy is probably due to immunopathology. These symptoms can be controlled by adjusting MP medications and using palliative meds as needed.
Your plan looks good.
Let us know how it goes.........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Jun 23rd, 2008 04:44 |
|
MP meds: Benicar 40 mg Q6h; 25 mg Minocin alternate days.
Non-MP palliative med use: Elavil, Ambien, vicodin as needed
Light: Low lux home. Outside covered, sunscreen, Noirs, hat. Trip to doctor, my office, 1 trip to store. 3 hours total. (florescent lights are a killer compared to natural light)
Symptoms:
IP increases in different places with each 25 mg. dose. A couple intolerable times when I added extra Benicar sublingual 20 mg and then vicodin.
I will post peak pain times, though it varies location from day to day and is almost gone when I am not experiencing IP. 
Need for excessive amount of nightly sleep is consistent - 10
(All pain listed below minimal when not experiencing IP)
Neck - 6
Rib cage - 4
wrists - 7 (left especially)
hips - 5
knees - 6
hands -5 (left especially)
Toes - 4
Hemorrhoidal tissue IP starting to decrease - 3
Sore throat - 2
muscles in upper arms and forearmes - 5
Dizzyness is worse the past two days. Not always tolerable.
Lymph in upper chest and legs are very tender - 4
fatigue - 4 ( not sleepy, but feel like lead poured into veins)
teeth sensitivity (new IP in the last couple days) - 2
Comments: Dizziness increasing. The last two days have been more bothersome. BP Norm is 104/70. Sometimes it goes down to 79/52. I'm no longer noticing the obvious 2 hour spike in pain following the 25 mg dose. I had thought I may be able to increase to 50 mg this week, but I'm still experiencing some IP and need to travel the following weeks. During the trip I plan to stay at 25 mg, stay covered and increase Benicar to 4 hours during car travel time. I will have darkened environments to rest in once my destination is reached.
Plan: Stay at 25 mg until the travel is completed, then move to 50 mg after July 14th if all IP tolerable.
Questions: Is this plan okay?
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Mon Jun 23rd, 2008 06:42 |
|
It's okay to stay with 25mg of mino while you are traveling but if symptoms escalate it may be necessary to increase mino. Please see When to increase antibiotics.
Natural light exposure will be a factor too. Please see Why it's necessary to avoid natural light and bright lights.
Increasing Benicar in anticipation of sun exposure may help. "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor.. See What precautions should I take when I must go out?
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 (natural light 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 adjust mino. Try only one of these options at a time. Assess effect before trying another option:
-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
-ramp up by 25mg See When to increase antibiotics
-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.
Please keep in touch..........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Jun 30th, 2008 03:32 |
|
MP meds: Benicar 40 mg Q6h; 25 mg Minocin alternate days.
Non-MP palliative med use: Elavil, Ambien, vicodin as needed
Light: Low lux home. Outside covered, sunscreen, Noirs, hat. Mostly indoors this week. < 1 hour out.
Symptoms:
IP modest: slight increases with 25 mg. dose.
Need for excessive amount of nightly sleep is slightly less - 9
(All pain listed below minimal when not experiencing IP)
Neck - 3
Rib cage - 2
wrists - 4 (left especially)
hips - 3
knees - 6
hands -3 (left especially)
Toes - 3
Hemorrhoidal tissue IP - 3
Sore throat - 1
muscles in upper arms and forearmes - 2
Dizzyness - Not always tolerable, but getting better.
Lymph in upper chest and legs are very tender - 4
fatigue - 4 - one particularly bad day with fatigue - 9
teeth sensitivity - 0
Comments: It has been a more stable week with a couple days of spiked symptoms. If we weren't travelling for the holiday, I would increase mino. I'm nervous about the light exposure and plan to stay covered with clothing and a blanket in the car. The travel and location of my family reunion will test my light sensitivity, but I do have a "dark cave" to rest in at all locations we will be staying.
Plan: Increase Benicar to Q4H tomorrow to prepare for travel on Tues. Continue Benicar Q4H while light exposure is increased due to travel. Stay at 25 mg minocin until the travel is completed, then assess stability to move the minocin dosing up.
Questions: Is this plan okay?
Yes 
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Tue Jul 8th, 2008 00:00 |
|
MP meds: Benicar 40 mg Q6h; 25 mg Minocin alternate days.
Non-MP palliative med use: Elavil, Ambien, vicodin rarely needed
Light: Excessive Light exposure. 3 / 7 hour days in a car. Always covered w/ appropriate strength NoIRs.
Symptoms: Doing extremely well on this trip. I am so happy with how much better I continue to feel. Even with all the extra light exposure. Natural light affects me far less than florescent light sources. Exposure on the car trip was excessive and I felt no problems. 10 minutes in a grocery store brought on fatigue. I really dislike florescent lights! 
IP in very specific places: Less IP in most joints. More in knees, throat, hemorrhoidal tissue, lungs, rib cage. All tolerable. Throat IP is the most uncomfortable.
Need for sleep is: 9 - 12 hours
(All pain listed below minimal when not experiencing IP)
Neck - 0
Rib cage - 0.5
wrists - 0.5 (left especially)
hips - 0
knees: 2-5
hands - 0.5 (left especially)
Toes - 3
Hemorrhoidal tissue: 3-6
Sore tonsils / throat - 5
muscles in upper arms and forearms - less pain/more fatigue.
Dizzyness - Not always tolerable but same as last post.
Lymph in upper chest and legs are somewhat tender - 3
fatigue - 3
teeth sensitivity: One particularly sore tooth & gum.
Short of breath: 6 (Definite increase when talking a lot.)
Comments: We will be travelling for another week and a half. I will continue Benicar Q4H or Q6H as needed per amount of light exposure. I am confident now in travelling. No problems at all. Enjoyed a 3 day family reunion! Now on to visit parents...
Plan: Stay at 25 mg minocin until the travel is completed, then assess stability to move the minocin dosing up.
Questions: Is this plan okay?
What does it mean to have an immune system that is not that blocked?
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Wed Jul 9th, 2008 01:11 |
|
Your plan is fine as long as you will be able to focus on ramping mino when you get home....it's not good to stay in phase one too long.
What does it mean to have an immune system that is not that blocked?
If I understand your question correctly, it means bacteria will be killed.
See you next week..........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Sat Jul 19th, 2008 00:29 |
|
MP meds: Benicar 40 mg Q6h or Q4h depending on light exposure; 25 mg Minocin alternate days.
Non-MP palliative med use: Elavil, Ambien, vicodin rarely needed
Light: Excessive Light exposure. 3 / 7 hour days in a car. Always covered w/ appropriate strength NoIRs.
Symptoms:
Need for sleep is: 9 - 12 hours
(All pain listed below minimal when not experiencing IP)
Neck - 0
Rib cage - 0.5
wrists - 2 (left especially)
hips - 2
knees: 2-5
hands - 4 (left especially)
Toes - 4
Hemorrhoidal tissue: 0-6 (Herx still evident here.)
Sore tonsils / throat - 0
muscles in upper arms and forearms - some pain/some fatigue.
Dizzyness - Not always tolerable...add salty treat to eat as necessary.
Lymph in upper chest and legs are tender - 3
fatigue - 1 improved
teeth sensitivity: 0
migraine - 1-10 (pretty sure this was from using a computer w/o Noirs. Learned my lesson! This lasted 4 days. It still lingers. The kind where your scalp hurts first and then a continual stabbing feeling behind the eye in the brain joins the fun.)
Short of breath: 0-6 ( A couple notable occurences.)
Comments:
Sorry for the late post this week. We were continually driving or visiting with relatives with rare opportunities for available internet.
We arrived home late last night. It was a wonderful trip. I'm so glad I decided to go. Coping with the MP was fine. While I normally wear shorts and sleeveless shirts in the summer, wearing pants and long sleeves was much less of a nuisance than I expected. Most places are over-airconditioned and while I "stuck out" a bit, I was comfortable. The bonus is a boost in confidence in resuming life-activities while on MP. For example, I was able to walk a 1 1/2 miles on a level track while on vacation. At times, in April, I could'n't walk half a block. When I am not herxing, I have much more energy. My sense of smell is coming back. After this sense being so limited for many years, I am amazed at times by how many good and bad smells I have missed. I look forward to more improvement in this area. My 9 year old boys recognize scents before I do because I don't have the "background knowledge."
Plan: Stabilize a couple days at home and begin 50 mg mino.
Questions: Is this plan okay?
Glad you had a good trip! Your plan sounds good.
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Sun Jul 27th, 2008 22:59 |
|
MP meds: Benicar 40 mg Q6h; 50 mg Minocin alternate days.
Non-MP palliative med use: Elavil, vicodin rarely needed
Light: Moderate Light exposure. Always covered w/ appropriate strength NoIRs. Some days I have stayed inside all day. One afternoon / evening I trimmed bushes in the shade. No problems with light. (I love to trim bushes!)
Symptoms:
Need for sleep is: 10 hours
(All pain listed below minimal when not experiencing IP)
Neck - 0
Rib cage - 1-3
lungs - a little excess phlegm - 1
Short of breath: 0-5 ( A couple brief yet notable occurences.)
wrists - 1 (left especially)
hips - 1
knees: 1
hands - 2 (left especially)
Toes - 0
Hemorrhoidal tissue: 0-2
Sore tonsils / throat - 0
muscles in upper arms and forearms - improved.
Dizzyness - 2
Lymph in upper chest and legs are tender to touch - 3
fatigue - 1 improved
teeth sensitivity: 0
migraine - 0
Pre-ventricular contractions: sometimes when lying on left side
Comments:
Doing well! Now that I'm on 50 mg, overall RA pain is much better. It was getting worse, so it must have been time to ramp up. The most prominent herxing I feel is a herx in my lungs / chest / rib cage region in response to mino. It is tolerable and predictable. I have had 4 doses of 50 mg mino so far. (8 days) This is really the best I've felt since last September. I'm so excited! (Hugs to TM and the moderators!!!) Light sensitivity is lessening for the time-being. Sometimes I can't see the computer with 40% NoIRs on and just put the monitor on it's dimmest setting. I've been more adventuresome in getting necessary shopping errands done, always covered with clothing and NoIRs. Doing great!
I've had pre-ventricular contractions for about 8 years. However, I realize this could be an area of IP so will include it. This week I was suspicious it was indeed IP. The lung / chest / lymph IP, I associate with 3 prior pneumonias and a resultant lung granuloma. My docs watch the lung granuloma but never say it's a problem. Seeing other's posts, I realize I should document for ARF that I have one.
I have stopped taking Ambien after weaning down to 2.5 mg. Getting to sleep is sometimes problematic, but I'd rather avoid this medicine if possible.
Plan: Continue on 40 mg Benicar Q6 and 50 mg Minocin. Could possibly move up to 75 mg Mino if moderators agree.
Questions: Is it appropriate to move up to 75 mg Minocin sometime this week?
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Mon Jul 28th, 2008 02:36 |
|
Michele, your report is longer than we need to monitor your weekly status and important details may get lost when too much information is posted. Please list only the significant symptoms this week.
Please report the amount of natural light exposure for the week. (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs at a picnic on Friday or housebound all week in low lux home). It will be important for you to correlate symptoms with light exposure and reduce your exposure if needed so you can continue ramping mino.
Any symptom that correlates with MP therapy may be due to immunopathology. Please see When should I be concerned about cardiac symptoms?
Based on your report of tolerable symptoms, you could increase mino to 75mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey.
Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Let us know how you are doing........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Jul 28th, 2008 02:43 |
|
Okay! Thanks, Meg! 
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Aug 4th, 2008 05:22 |
|
MP meds: Benicar 40 mg Q6h; 2 doses 75 mg Minocin alternate days. 3rd dose taken after 72 hours.
Non-MP palliative med use: Elavil, 1/2 vicodin 2 times
Light: Varied. Inside except for the following: 7/28 working in shaded yard -3 hours. 8/2 shopping - 3 hours. 8/3 hiking on shaded mountain trail / picnic - 5 hours. Always covered w/ appropriate strength NoIRs when outside.
Symptoms:
Need for sleep is: 10-12 hours
IP: Hips-4, Wrists - 5, ribs-4 hands-5, lungs stinging-6, knees 4, Fibromyalgia - 7 after 2nd 75 mg. (Thus stretched 3rd dose to 72 hours)
Comments:
The day following the second dose of 75 mg was more difficult. Slightly above tolerable. I increased Benicar to Q4, added a 1/2 vicodin and stretched the mino dosing to 72 hours. All worked and will add to personal tool kit.
Plan: Continue on 40 mg Benicar Q6 and 75 mg Minocin. Could possibly move up to 100 mg Mino later this next week. It will depend on the next two doses of 75 mg Mino.
Questions: Does my plan sound okay?
Thanks for all your help!!! 
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Tue Aug 5th, 2008 10:32 |
|
You are getting a lot of natural light exposure which may be a factor in your ongoing symptoms. If so, eliminating all avoidable daylight outings may reduce symptoms and allow you to ramp antibiotics. Please see Why it's necessary to avoid natural light and bright lights.
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.
Let us know how the experimenting goes...........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Sun Aug 10th, 2008 19:37 |
|
MP meds: Benicar 40 mg Q6h; 75 mg Minocin alternate days.
Non-MP palliative med use: Elavil, 1/2 vicodin as needed
Light: Inside except for the following: 8/7 travelling 2hours; 8/8 travelling 2 hours. Always covered w/ appropriate strength NoIRs when outside.
Symptoms (baseline / IP in 2 hour and 24 hour bumps):
Need for sleep is: 10-12 hours
IP: Hips: 0/4, Wrists: 0/4, ribs: 0/3 hands: 1/5, short of breath: 0/2, knees 0/1, Fibromyalgia: 0/2, toes 1/3, chest lymph tenderness 1/3.
Comments:
I still have a noticeable yet tolerable boost of IP with 75 mg Minocin so did not increase to 100 mg. Beginning today, I will be travelling extensively due to a death in my family and will just stay at 75 mg and not experiment with doses until I am back at home later in the week. I have read the links as recommended. I understand about the light restrictions. My photosensitivity is very low right now. Much lower than in the first several months. I cannot see my computer screen with 40% NoIRs on and have turned it to the lowest light setting and don't use NoIRs. I cannot see with the 40% on inside, so I just use incandescent light w/o NoIRs. I understand that this may not remain consistent and am alert to the facts that I may again become more photosensitive as I change doses and also when I move into phase II. I am also aware that it may take 3-4 days for sunlight exposure to have an effect. All is good and I am very happy with how I am progressing on MP phase I.
Plan: Continue on 40 mg Benicar Q6 and 75 mg Minocin. Could possibly move up to 100 mg Mino later this next week. It will depend on reactions while travelling.
Questions: none
Thanks!!!
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Sun Aug 17th, 2008 22:55 |
|
MP meds: Benicar 40 mg Q6h; 75 mg Minocin alternate days. Began 100 mg Minocycline 08/16/08.
Non-MP palliative med use: Elavil, 1/2 vicodin as needed
Nyquil (2 nights), Biodefender (3 days), Mucinex (1 dose per day for 2 days)
Light: Varied. Sunday - Wednesday; car travel daily, wake, funeral, burial , reception. All included natural light. Always covered w/ appropriate strength NoIRs. Thurs - Today: No natural light. Indoors at home.
Symptoms: Varied.
Sunday: more arthritic pain - took 1/2 vicodin along with Benicar Q4 for travel.
Monday - Wed: Mostly comfortable but tired of sitting in car. Hands a little sore hanging on to steering wheel.
Thurs - Today: arthritis - minimal. Mostly left hand. No spikes in arthritic IP. Cold virus or flu symptoms: body aches, fever, chills, sinus congestion, sore throat, chest congestion, cough. The cough has very quickly brought on pleuritic pain. My ribs are tender. Pleuricy was a major problem with every pneumonia I've had before. No spikes. It acts like a true cold and I assume it will run its course.
Comments:
Travelled from VA to IN and back for a funeral. No problems with light. IP on the decrease.
With my past history of bronchitis and pneumonia, I am alert to symptoms of this hopefully passing cold. This is day 4. The cold started the same day as my period. With the variance I have had this week in routine, I have not experiemented with dosing schedules and kept that steady. I ramped up to 100 mg minocycline yesterday because arthritis IP was minimal. I am so far not noticing any extra IP from the dose increase. I have received the questionairre for phase II and begun filling it out. Thanks!
More variables than I have had this summer begin this coming week. My sleep schedule will have to change drammatically. I have been sleeping from 1 am - noon. Now I will need to be up by 7:30 am to get my boys ready and delivered to a day camp and my opening meetings for work at school begin. It will be a rough transition.
Plan: Continue on 40 mg Benicar Q6 and 100 mg Minocycline. Once my cold is no longer a significant variable, I want to do further exploration of how minocin works for me by lowering the dose and taking it more often, and again stretching a dose out to 72 hours. Send back the MP questionairre. Discuss the appropriate medicines for phase II with moderators and Doctor.
Questions: I could try immediate daily dosing with the 100 mg Minocycline as one of the first explorations of how mino affects me. (Taking a dose today) It also may have a bonus to prevent a secondary infection from my cold. At these higher levels of mino, my arthritis symptoms are negligable. Would this be a reasonable thing to do?
Thanks so much!!!Last edited on Sun Aug 17th, 2008 23:14 by Michele MBK
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Foundation Staff .

| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17244 |
| Status: |
Offline
|
|
Posted: Mon Aug 18th, 2008 06:00 |
|
Michele, photosensitivity is more than an increase in eye symptoms. It also includes neurological symptoms provoked by stimulation of the amygdala and systemic symptoms provoked by an increase in 1,25-D due to natural light stimulating keratinocytes in infected cutaneous tissue. Please see The Effect of Sunlight/daylight and Bright Lights.
You report "No problems with light. IP on the decrease." But also symptoms of a cold. You will see this is a very common symptom of immunopathology as you read more progress reports.
Any symptom that correlates with MP therapy may be due to immunopathology. Please see I think I have an upper respiratory infection. What should I do?
Whenever the cause of symptoms is in doubt, try an extra Benicar immediately to see if it dampens symptoms. You should also try increasing Benicar to every four hours for 24 hours and assess.
Biodefender is contraindicated because it is touted to be an antibacterial, antiviral and antifungal agent. Please see Why do I have to stop my alternative treatment and avoid most supplements?
I could try immediate daily dosing with the 100 mg Minocycline as one of the first explorations of how mino affects me. (Taking a dose today) It also may have a bonus to prevent a secondary infection from my cold. At these higher levels of mino, my arthritis symptoms are negligable. Would this be a reasonable thing to do?
First, try the increase in Benicar and then a decrease in mino.
If increasing Benicar does not reduce intolerable symptoms enough, you may adjust mino.
Try only one of these options at a time. Assess effect before trying another option:
-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
-ramp up by 25mg See When to increase antibiotics
-take low dose, high frequency mino (e.g. 25mg every 6 hours or 50mg every 12 hours or a daily dose of 25 or 50mg)
If you are battling a virus (cold), we suggest the same measuures (increasing Benicar and adjusting mino) to decrease immunopathology symptoms and increase comfort. Palliative measure can be found in the about FAQ.
Keep up the good work.........
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Wed Aug 20th, 2008 01:06 |
|
Hi Meg,
MP medicine: Benicar Q4; Minocycline 100 mg
Non-MP medicine: Elavil, Mucinex
symtoms: chest congestion,
light exposure: 30 minutes: driving in a car taking kids to day camp.
Comments:
Thanks for the info. and links. I've taken Benicar every four hours for 24 hours. Yesterday was my second dose at 100 mg mino. It is kicking in some arthritis IP this afternoon and more obvious eye / light sensitivity. Thanks for the info. on biodefender - it is discontinued. I'm curious as to how it works in assisting the immune system, but know it's not on your list of things to study today! My cold is slightly better, but I have lots of chest congestion. Annoying, but not alarmingly so. I just feel whiney and crummy from the cold so the extra IP is annoying.
Plan: Move to a lower mino dose tomorrow. Probably 75 mg.
Questions: Should I now go back to Benicar Q6? Or keep up the Q4? I know your note says 24 hours, but I wondered if I should stay at Q4 a little longer through the exra IP.
Does the mino dose amount sound ok? Or should I go a little lower?
Just checking that I understand this correctly... my cold is either viral, IP from mino, or instigated by the extra light exposure?
If it is viral in nature and a newly introduced pathogen to my "pea soup," is it still considered IP since my immune system clearly has to activate to rid the new virus?
If the cold is from the MP getting rid of pathogens, does that make me not contagious to others? For example, if my kids and husband don't get sick, it's probably herx?
If so, we are all hoping for herx in this house!
Thanks so much for your help. The changing up doses and experimenting is part of the protocol I'm most uncertain about...especially when I am trying to relate where symptoms fit in as IP, external source, or sunlight exposure. But, I'll get there!!!

Michele
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Fri Aug 22nd, 2008 04:42 |
|
MP medicine: Benicar mostly Q4, some Q5/6; Minocycline 100 mg (Lowered last dose to 50mg)
Non-MP medicine: Elavil, Mucinex
Light: driving children to day camp and errands to store. 2 hours covered with Noirs and hat.
Comments: Cold symptoms still evident in sinus and chest, Very productive cough. However, two others in my family now have the same cold symptoms. It appears viral unless IP is contagious.
From Monday until yesterday, I've taken Benicar mostly Q4. I've stretched it out to 5 hours over night and then back to 4 during the day. The cold still present, I tried dropping the Mino next...50 mg yesterday. Today, the arthritis that has been really on a low simmer started heating up. My elbows which haven't bothered in a long time...knees and hands are really burning. 1/2 hour ago, I took 20 mg Benicar sublingually. The pain has not subsided. I will take vicodin to assist pain when I go to bed.
I'm not sure where to go next and need help. Going lower made arthritis worse. But the next suggestions are to stretch it out for 72 hours. I have no idea why things are getting out of tolerable range.
Potential plan. Tomorrow is normally a minocin day. I could return to 75 mg minocin or experiment with taking it more often. It appears that less mino is increasing arthritis IP beyond tolerable so I am hesitant to stretch it to 72 hours.
Questions: Help! What do I do next?
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
VEZ R.N. Health Professional
| Joined: | Fri May 19th, 2006 |
| Location: | USA |
| Posts: | 2467 |
| Status: |
Offline
|
|
Posted: Sat Aug 23rd, 2008 20:29 |
|
Thanks for checking in M.
The every 4hr Benicar schedule is for high level symptoms so you can assess your symptoms and adjust accordingly.
Your plan to move to 100mg sounds fine. Just keep up the assessment of symptoms and all supportive care...avoidance of sun/light exposure, keep well hydrated and get good nutrition. Take good care and keep up the nice work.
Best, VEZ
|
Michele MBK member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 83 |
| Status: |
Offline
|
|
Posted: Mon Aug 25th, 2008 02:22 |
|
MP Medicine: Benicar Q 6 Minocin / Minocycline 100 mg. (Reduced dose to 75 1 time)
Non-MP Medicine: Elavil, vicodin as needed
Light exposure. Varied. Route to work. Florescents in meeting rooms. Some days I've had several hours of light exposure to florescents. Limited to natural light. Just the car drive. My schedule is quite varied and I'm not sure how to post hours of light exposure because each day is different. This weekend, I've had no natural light and have been in my cave.
Symptoms:
Cold symptoms, chest and sinus congestion - 7
Joint Pain: A definite out of control spike.
Mid back - 7
wrists - 7
knees - 6
elbows -6
ribs / pleural lining? - 6
Comments:
An experienced MP-er commented that changing from Minocin to Minocycline for the 100 mg doses may have increased IP beyond control due to the Minocycline having more strength. Once I went back to pelletized Minocin, IP is more under control and tolerable.
I still need to experiment with minocin more often to see how I respond. I have taken less and stretched out to 72 hours. Benicar Q4 doesn't make so much difference. When pain gets out of control, I also have to add vicodin.
Plan: Use Minocin pelletized for a few more doses at 100 mg. Then experiement with dosing minocin closer together. Now that I know Minocycline has a bigger punch than minocin, I will also experiment with minocycline at 1/2 capsule, 3/4 capsule (100 mg capsules).
Questions: None.
____________________ RA 125D30 D25=16 Celebrex (Vicodin) low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9; May 09 D25=6.3
|
 Current time is 03:33 | Page: 1 2 |
|
|
 |
|