| Author | Post |
|---|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Tue May 20th, 2008 10:40 |
|
Benicar posts
mp meds: benicar 40mg q6h, mino 50mg qod (three times)
non mp meds: advil, valium 1mg
light: not much except to work out in gym
symptoms: anxiety (6), fatigue (4), fluish (5), itching all over head (8), itching hands (6)
Had a sunflare/rage about a week ago after being out in the late afternoon early evening sun for two hours
Jeff
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Wed May 21st, 2008 04:24 |
|
Thanks for letting us know you have started minocycline, Jeffrey. It is a requirement of participation in our clinical study and counseling on this study site to post a brief progress report weekly using the standard format so Staff can catch any problems early. Failure to comply may result in being dropped from the study because we cannot ensure your safety under these circumstances.
Please see What should I know about Minocycline?
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 to find folks with similar problems and learn how they are managing the protocol.
Your history of arrhythmia and your recent reaction to natural light exposure suggests you at risk for a serious adverse event if you spend too much time in the sun. See When should I be concerned about cardiac symptoms?
Sunscreen does not shield you from natural light. "Not only is the sun block insufficient, the concept that it will allow you to freely move out-of-doors is flawed.You cannot change the way your body works as it heals. Nobody, not one person, has managed to recover without drastically changing their lifestyles during their recovery." ..Trevor..
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?
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.
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.
Keep in touch.........
|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Fri May 30th, 2008 10:56 |
|
mp meds: benicar 40mg q6h, mino 50mg q48h (eight doses)
light exposure: home in low luxe
symptoms: nausea (10), sleepiness (6), fatigue (5), dizzy (9), itchy feet (10), strange noises in left ear (4), anxiety (6)
Feet and hands get extrememly itchy following hot bath or shower. Nausea has been going on for three days.
Checking In, Jeff
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Fri May 30th, 2008 23:18 |
|
Jeff, don't forget the first step when symptoms are intolerable is to increase Benicar.
Continuing high level symptoms without a pattern or a change in the quality of symtoms may signal the need for an increase in antibiotic dose. See When to increase antibiotics.
You've taken 8 doses of 50mg mino. Recommend you try an increase to 75mg and assess.
If the post-shower itching is intolerable, you could shower right before bedtime, then take Benadryl which should reduce the itching and has a side effect of sleepiness. See I’ve developed a rash/itching/skin problem. What should I do?
For suggestions to cope with nausea, see What should I do for my stomach problem?
Hang in there........
|
Toni girl
Member in Phase 2
| Joined: | Wed Jun 6th, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 229 |
| Status: |
Offline
|
|
Posted: Sun Jun 8th, 2008 01:43 |
|
mp meds: benicar 40mg q6h, mino 75mg QOD (three doses since 5/1/08)
non mp meds: valium 1mg twice, phenergan three times
light exposure: 1 hour in car
symptoms: insomnia (8), anxiety (7), lethargy (8), nausea (10)
My symptoms were worse for a while after increasing the mino to 75mgs, but things are starting to settle down a bit, except for the insomnia. My OCD symptoms have improved significantly and I only seem to have them about 5% of the time now which is truly, truly amazing!
Thank You Very Much, Jeff
I used my mom's computer without logging out from her account first. Sorry. We all use the same computer.
____________________
Lyme CFS, Hashimoto's FM 125D46 MP 07/07 cytomel phenergan valium O2 mg ox 2/09 25D-4 NoIRs limited outings covered Modph1 09/07 Ph1 03/08
|
P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
| Posts: | 2125 |
| Status: |
Offline
|
|
Posted: Sun Jun 8th, 2008 02:05 |
|
Jeff, Thanks for checking in. Great news about better control of the OCD!
best, P.B.
|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Sun Jun 29th, 2008 20:42 |
|
mp meds: benicar 40mg q6h, mino 100mg qod (5 times)
non mp meds: valium 1mg (two times)
light: house bound
symptoms: insomnia (5), stomache ache (5), ocd (5), dizziness (10), palpitations (7)
I have not posted for awhile because I just moved to NYC. I am being careful to stay out of the light except for traveling last week. I think I need to reduce to 75mgs of mino to lessen the symptoms.
Thanks, Jeff
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sun Jun 29th, 2008 22:22 |
|
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...........
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sat Jul 26th, 2008 09:40 |
|
Jeff, our quality assurance team has noticed you are not posting a weekly report and are wondering if you have been reading the FAQs, other progress reports etc, because you are not online very long or very often.
Being a member of our clinical study requires total compliance to ensure your safety and maintain the integrity of the study. Please see Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol.
In order for you to remain in the study, you must begin posting weekly or contact us with an explanation.
We want to continue helping you but we will need your cooperation........
|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Mon Jul 28th, 2008 14:38 |
|
mp meds: benicar 40mg q6h, mino 75mg qod
non mp meds: advil
light: minimum
symptoms: constipation (7), hemorrhoids (8), fainting (10), dizziness (8), stomach aches (6)
I fainted once the other day (my girlfriend had to catch me)and blacked out twice while standing up. I had flu-like symptoms a couple of weeks ago with a temperature for a few days after being on the mino at 100mgs so I reduced it back to 75mgs. After the fainting I reduced it to 50mgs.
Checking in, Jeff
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Tue Jul 29th, 2008 06:02 |
|
light: minimum
-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)
Please respond to moderators questions. Did you experiment as suggested June 29?
Why are you taking Advil? How often do you need it?
Be sure to take precautions to prevent injury when immunopathology caused dizziness. Why am I dizzy and/or fainting? What should I do?
It's important to prevent constipation when you have hemorrhoids. Please see I’m constipated. What should I do? and I’ve developed rectal bleeding. What should I do?
It's okay to palliate symptoms so you can ramp mino. Please see What should I do for my throat, esophagus or stomach problem?
It is important not to stay in phase one too long. Bacteria may exist that are resistant to minocycline and they may repopulate tissues cleared of bacteria. Low-dose combinations of MP antibiotics are far more effective at killing CWD than antibiotic monotherapy.
Continuing high level symptoms without a pattern or a change in the quality of symptoms may signal the need for an increase in antibiotic dose. See When to increase antibiotics
Please send for the questionnaire for phase 2 now so you will be able to discuss the next antibiotic with your doctor.Send an email to marshallprotocol2@yahoo.com with 'request Phase 2 Q' in the subject line.
Please keep in touch...........
|
Toni girl
Member in Phase 2
| Joined: | Wed Jun 6th, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 229 |
| Status: |
Offline
|
|
Posted: Fri Aug 1st, 2008 19:15 |
|
My son, Jeff, called me yesterday and told me he couldn't breath and he felt like he was drowning. I told him to take extra benicar and his doctor called in a bronchodialator (albuterrol). I also told him to go to the emergency room if it didn't get better. I talked to his girlfriend and he had taken a shower and was able to go to sleep. I will post more as I learn more.
Thanks, Toni
Noted
____________________
Lyme CFS, Hashimoto's FM 125D46 MP 07/07 cytomel phenergan valium O2 mg ox 2/09 25D-4 NoIRs limited outings covered Modph1 09/07 Ph1 03/08
|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Sun Aug 3rd, 2008 20:20 |
|
mp meds: benicar 40mg q6h
non mp meds: valium 2mg (one dose), albuterol, milk of magnesia
light exposure: housebound for three days and several hours a day before that
symptoms: chills and fever: (6), cough (6), ocd
The bronchodialator helped the sob as soon as I used it the other day. I have not had the mino since 7/31. The sob is gone now completely but the OCD symptoms have started up again. I slept through the 8 hour benicar blockade last night. I will be taking the benicar every 4 hours and then start a low dose frequent dosing of mino tomorrow. I sent off for the phase 2 questionnaire.
Jeff
Last edited on Sun Aug 3rd, 2008 20:55 by jeffrey boy
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Tue Aug 5th, 2008 11:27 |
|
You took the right action to control your shortness of breath (increased Benicar and bronchodilator) and to re-establish the Benicar blockade. Please review What should I know about respiratory immunopathology?
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. We look forward to welcoming you there when you have received a response to your completed questionnaire.
Keep up the good work..........
|
jeffrey boy
Member in Phase 1
| Joined: | Fri Feb 8th, 2008 |
| Location: | Ocala, Florida USA |
| Posts: | 13 |
| Status: |
Offline
|
|
Posted: Fri Aug 15th, 2008 06:23 |
|
mp-meds: benicar 40 mmg Q 6H
light exposure: 4 hours
syptoms: coughs (5) dizziness (3) fatigue (4) constipation (7) anxiety (5) insomnia (5) ocd (3)
thankyou, jeff
____________________
OCD cluster headaches photosensitivity stigmatism arrythmia|11/27/07 D1,25=65 D25=22| avoiding light and D in foods|albuterol milk of magnesia valium
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Fri Aug 15th, 2008 18:25 |
|
Jeffrey, it's a requirement of participation in our clinical study and counseling on this study site to post a brief progress report weekly using the standard format so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help. Failure to comply may result in being dropped from the study because we cannot ensure your safety under these circumstances.
Your report is incomplete so we are unable to tell how you are doing.
What is your dose of minocycline?
Please report the palliative non-MP meds you've taken for the week and the number of times you needed them.
Is light exposure 4 hours per day or per week?
Please let us know if any symptoms are intolerable.
What is your plan?
|
Current time is 19:10 | |
|
