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CFS South Africa
Member in Phase 3
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Posted: Sat May 24th, 2008 11:30 |
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Hi there
I'm happy to say that I started MP on 21 May 2008. I've been off Vitamin D for the past two months and have started feeling about 15% better since avoiding Vitamin D. These are my symphoms I've had consistantly for the last year:
[size=Insomnia (8 years)]
[size=Fatigue]
[size=Flu like symtoms]
[size=Unable to exercise or drink alcohol any more (feel much worse after either of these). I used to exercise 6 times a week. Now I’m lucky if I can train once a week at 25% of my usual capacity.]
[size=Swollen/sore glands in neck and shoulders]
[size=Pain in my ears]
[size=Pain in my chest]
[size=Sinus congestion]
[size=Sore/red eyes]
[size=Head aches]
I started benicar on 21 May 2008 - 40mg - four times a day - every 6 hours. Since taking benicar I've had no adverse effect and no herx response. If anything I've felt a bit better. I'm extremley focused on making MP work, however because of the my job (and where I live - South Africa) I'm exposed to about 4/5 hours of sunlight every two weeks. I definaltley feel worse after I've been in the sun. I'm trying to cover up as much as possible and wear my sun glasses all the time.
I would like to start taking Minocycline in the next few days - 25my - every 48 hours - Do you agree with this?
Regards,
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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CFS South Africa
Member in Phase 3
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Posted: Sat May 24th, 2008 11:36 |
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My Symphoms rated 1-10:
Insomnia - 6
Flu like symphoms - 5
Fatigue - 5
Post exercise fatigue - 6/7
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 6
Pain in chest - 5/6
Pain in ears - 5
Sinus congestion - 5
Red/sore eyes - 5
Head aches - 4/5
All these rates increase by about 2 points after exercise and/or alcohol.
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Foundation Staff
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Posted: Sat May 24th, 2008 21:39 |
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Hi Ross,
Welcome to the study cohort. We look forward to following your progress on the MP.
Thanks for letting us know you have started taking Benicar. You are responding as expected.
Please go over items on this checklist. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking.
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 this initial stage of your MP journey is a good time to review these materials:
Phase One Guideline (print it out so you can refer to it often)
How does Benicar work?
Benicar dosage and schedules
I just started Benicar. Why do I feel worse? What should I do?
How long should I stay on Benicar? Why don't I feel better? When should I start minocycline?
What should I do if I need to take a non-MP antibiotic?
What precautions should I take when I must go?
It's a good idea to get in the habit of charting your symptoms.
You have a lot of hormonal adjusting going on right now as the Benicar blockade dramatically reduces 1,25-D. See Hormonal changes resulting from changes in 1,25D-hydroxyvitamin-D.
It's important to avoid natural light exposure and bright light falling on the eyes during this time by eliminating all avoidable daylight outings, wearing NoIRs, lowering artificial home lighting to 30 Lux and covering up well when you do have to go out. See Why does exposure to natural light increase symptoms?
The recommended first step should symptoms go past tolerable is to increase Benicar.
Based on your report, you could start minocycline soon. Please read What should I know about Minocycline?
Let us know how it goes......
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CFS South Africa
Member in Phase 3
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Posted: Mon May 26th, 2008 23:32 |
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I've now been on benicar (votum) for 6 days now and I've been feeling really good. I've had about half an hour of sun exposure since my last post. I can feel my symptoms increase after I've been in the sun. I've become a little more light sensitive since starting MP, but nothing serious.
I had little increase in symptoms today (small herx I think) as it went away after I took my benicar.
I still taking benicar (votum) 40mg - 4 times a day - every 6 hours. I will be starting minocycline tomorrow - 25mg. Do you recommend I take this with my last benicar at 11pm to avoid (sleep through) possible herx?
Regards,
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Tue May 27th, 2008 01:18 |
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Thanks for checking in. Please use our standard reporting format with each weekly report:
MP meds:
Palliative non-MP meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
-Report Benicar and antibiotics in mg with schedules for each, indicate recent changes
-List all your daily non-MP meds in your signature line.
-Report the palliative non-MP meds you've taken for the week and the number of times you needed them.
-List routine measures to avoid light exposure (NoIRs, low lux home, homebound, limited outings covered up, lite exp. r/t work, etc) in your signature line.
-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)
-Report key symptoms only in a list and rate them on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you. It is not necessary to elaborate.
You took the right action by increasing Benicar to reduce symptoms. Benicar palliates symptoms due to light exposure as well as symptoms due to immunopathology.
Natural light exposure may have provoked some of the symptoms you reported. It will be important to correlate symptoms with light exposure keeping in mind the reaction is sometimes delayed by several days. See The Effect of Sunlight/daylight and Bright Lights
The response to minocycline doesn't always occur immediately. Recommend you take your first dose in the morning so you can assess any immediate response. You should know in a couple days if there is a pattern and if taking it at bedtime will help you avoid some symptoms with sleep.
Keep in touch........
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CFS South Africa
Member in Phase 3
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Posted: Thu May 29th, 2008 21:55 |
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Hi There
I started 25mg minocycline 36 hours ago (7am). My headaches increased quite a bit and my glands seemed a little more sensitive, otherwise not feeling too bad, also a little sore in the ears. Played golf for 5 hours in the sun (for work). I was fully covered up with lonsleeve clothes and cap - no sunglasses, as I'm be reiving them in the next week. Don't think symptoms are from light exposure as they are slightly different then usual.
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Increased to every four hours when I go into the sun to play golf (part of my work) and 12 hours afterwards.
mino 25mg Q
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 6 hours since my last post - 5 hours golf - 1 hour in the car driving
Symptoms:
Insomnia - 6
Flu like symphoms - 5
Fatigue - 6
Post exercise fatigue - 6/7
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 7
Pain in chest - 6
Pain in ears - 6
Sinus congestion - 5
Red/sore eyes - 5
Head aches - 7
Comments: I'm trying to limit the sun exposure, however because of my job I have to play golf a least once every two weeks for 4/5 hours. I'm trying to limit the sun exposure as much as possible and I cover up almost completely on the golf course. I do feel worse after playing, however in my job its almost unavoidable.
Questions: Will this amount of sun exposure every two weeks affect my progress? I do feel worse after I'm in the sun for this amount of time, however I feel I'm getting better and hopefully the MP will still work even if I have the odd small set back from being in the sun.
Regards,
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
| Location: | USA |
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Posted: Thu May 29th, 2008 23:14 |
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Thanks for checking in Ross.
Your symptoms will continue to increase in severity as you move ahead with the MP if you are not able to control your sun exposure and may even pose a definite risk to your welfare. Please read all of these links for your education and understanding of how you may be affected by sunlight exposure.
PROTECTING YOUR EYES
Where to purchase NoIR and Bolle 100 sunglasses
Natural light; protect skin and eyes..
Artificial light; protect eyes / not skin..
The effect of light on the brain (Amygdala)
Dr Marshall wrote: "The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the Amygdala in the brain. These neurological symptoms include fatigue, irritability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis." Adequate eye protection is particularly important to the process of keeping symptoms manageable and tolerable.
If the sunlight exposure isn't excessive enough to maintain a high 1,25-D continuously the bacteria will still be killed and that will be evidenced by immunopathology which you will learn to recognize. If the 'sun flare' symptoms become intolerable (and they probably won't if you are careful), you will need to find creative ways to reduce your sunlight exposure.
The VEZ
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CFS South Africa
Member in Phase 3
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Posted: Sun Jun 1st, 2008 18:57 |
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Hi there
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Increased to every four hours when I go into the sun to play golf (part of my work) and 12 hours afterwards.
mino 25mg Q Moderator Note: please also post schedule and started date or number of doses at this level. thank you.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 6 hours since my last post - 5 hours golf - 1 hour in the car driving
Symptoms:
Insomnia - 6
Flu like symphoms - 5
Fatigue - 6
Post exercise fatigue - 6/7
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 7
Pain in chest - 6
Pain in ears - 6
Sinus congestion - 5
Red/sore eyes - 5
Head aches - 7
Comments:
Since my last post I've been feeling pretty good and have been able to go out and socialise more then I would normally do and I feel a little more spontaneous.
The only notobale/different symptoms i've had since I started the minocycline are: headaches - 24 hours after taking mino - diarrhoea - slight lightheadedness if i get up form sitting or lying down - A little brain fog.
Questions: Are these symptoms part of my herx responsse? I though I'd be feeling alot worse after taking the votum and mino - Do you think the worst is still to come or should I increase mino to 50mg?
Regards
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Foundation Staff
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Posted: Sun Jun 1st, 2008 22:15 |
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Sustained natural light exposure has the potential to elevated 1,25-D and keep it elevated. When 1,25-D is high enough, it is immunosuppressive. With the Benicar blockade in place, the immune system should be killing bacteria even when 1,25-D is high. See Why do I feel better in the summer? And worse in the winter?
Your 25-D is also high enough to suppress the immune system and the amount of sun exposure you get will probably increase it somewhat.
If symptoms are tolerable, you could increase mino to 50mg. 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........
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CFS South Africa
Member in Phase 3
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Posted: Thu Jun 5th, 2008 21:06 |
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It's been four days since my last post. I'm definatley feeling better by an overall amount of about 15% since starting MP. The only real negitive response I've had from the mino since my last post is a slight lack of motivation. I feel a little more tired then usuall, but a good tired and not a tired that feels like I haven't slept in two weeks.
The pain in my neck and glands has decreased quite dramatically and people are aleady saying how much better I look, after only two weeks on MP - I can also notice the change.
My headaches has pretty much gone away - so I think I'll ramp the mino up to 50mg in the next day.
When I stay out of the sun it really makes a difference and I feel pretty good. I'll be trying to avoid the sun like the plague in order to ensure my recovery.
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day.
Mino 25mg - every 48 hours - started 28 May.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours since my last post - 1 hour in the car driving
Symptoms:
Insomnia - 6
Flu like symphoms - 4
Fatigue - 6
Post exercise fatigue - 6
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 5
Pain in chest - 5
Pain in ears - 5
Sinus congestion - 4
Red/sore eyes - 4
Head aches - 4
I'll keep going, I believe I'm on the right track to regaining my health!
noted thank you.
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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CFS South Africa
Member in Phase 3
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Posted: Mon Jun 9th, 2008 22:03 |
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Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
Been feeling alot better since starting MP and after staying off all Vitamin D. I think I'm starting to notice the effects of IP. About 30-40 hours after ramping up to 50mg Mino I started feeling flu like symptoms and soreness in my glands. My eyes were also pretty sore. I noticed that when I took my benicar I started to feel better. The IP (Herx) only lasted for about 8 hours and was tolerable. I've also noticed my sleeping hasn't been that great lately and I think that has to due with my IP. I'm also getting a numbness in my legs and arms quite a bit more then usual. I am able to exercise now (25% of max capacity) and I seem to recover sooner and I'm energised quicker then before MP, which is a huge plus for me.
Here are my symptoms at present:
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours since my last post - 1 hour in the car driving
Symptoms:
Insomnia - 6
Flu like symphoms - 5
Fatigue - 6
Post exercise fatigue - 5
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 5
Pain in chest - 5
Pain in ears - 5
Sinus congestion - 4
Red/sore eyes - 6
Head aches - 4
Question:
I seem to be progreesing really well on MP and I've been feeling better then I have in the last year. My IP moments don't tend to be bad at all and are very tolerable. Even when I herx it's certainly not as bad as I felt pre-MP. Do you think this has to do with that fact that I've probably only had CFS for about 2 years?
Ross
there is no way of knowing. thank you
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Aunt Diana
Moderator
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Posted: Mon Jun 9th, 2008 23:59 |
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Hi Ross,
I think you may be right....you are so lucky to have discovered the MP so early in your illness. I'm glad it is working out so well for you.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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CFS South Africa
Member in Phase 3
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Posted: Mon Jun 16th, 2008 20:30 |
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Hi There
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
I'm progressing vey well on MP. I'm starting to identify IP and I'm finding it tolerable and it last a few hours. I have also had bouts of amazing energy - energy I haven't felt in the last year, so good signs for the future. My light sensitivity has increased and I'm trying to make a concerted effort to stay out the sun. When I play golf for 4 hours in the sun I feel dreadfull afterwards - no golf for me for a while then. My post exercise fatigue is not as bad as before MP. I'm able to train at 25% of full capacity with two days rest inbetween. I'm also finding I'm getting back to my spontaneous old self and I'm socialising a bit more. My positive energy is increasing and I'm really feeling good about life at the moment.
Here are my symptoms at present:
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 6 hours sun exposure since last post (5 hours golf - 1 hour driving)
Symptoms:
Insomnia - 5
flu like symphoms - 5
Fatigue - 5
ost exercise fatigue - 5
Post Alcohol fatigue - 9
Swollen/sore glands neck/shoulders - 4
ain in chest - 4
ain in ears - 4
inus congestion - 4
Red/sore eyes - 6
Head aches - 3
I'll remain on 50mg mino for another week and see how I'm feeling by then before increasing to 75mg.
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Tue Jun 17th, 2008 08:40 |
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Ross, you have an illness which is going to require some adjustments if you want the protocol to work. It's good that you will not be playing golf. This is asking for trouble.
The reason you are feeling so good is your extremely elevated 25-D is suppressing your immune system and limiting immunopathology (IP).
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
You can expect symptoms to increase as this lowers. It's a good idea to check it monthly to be sure it is coming down.
Exercise can suppress the immune system also. Please see Are there any guidelines on exercise and rest during the MP?
Your goal is to kill bacteria. The evidence of that will be IP which is why we caution folks they will feel worse before they feel better. Please see Simple Explanations.
What is your dose and schedule of Benicar?
If symptoms approach 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 up the good work.............
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CFS South Africa
Member in Phase 3
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Posted: Mon Jun 23rd, 2008 14:15 |
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Hi There
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
This last week has been a bit of a struggle. I've had a increase in all my symptoms. I've been very fatigued and have definately had a lack of motivation to do anything. It's worse in the mornings as I struggle to get going and don't feel to good. At nigt I seem to be a lot better and my brain seems to function a lot better. This must be IP?
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 50mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours sun exposure since last post (driving)
Symptoms:
Brain Fog - 6
Insomnia - 6
Flu like symphoms - 6
Fatigue - 7
Post exercise fatigue - 5
Swollen/sore glands neck/shoulders - 4
Pain in chest - 4
Pain in ears - 5
Sinus congestion - 5
Red/sore eyes - 6
Head aches - 5
Question:
I've had small bouts of IP before this last week, however this last week seems to have been the worst so far. The IP is tolerable at the moment, should I increase Mino to 75mg? I've been on MP for a month now, why would I only really start to get IP after 3 weeks?
Regards,
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Aunt Diana
Moderator
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Posted: Mon Jun 23rd, 2008 22:29 |
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Hi Ross,
I don't know why it took 3 weeks for the IP to kick in....they say to give it 2 weeks....so 3 weeks isn't far off. Everyone seems to respond uniquely to the meds. (oh....I just read Meg's response to you earlier....and she mentions that your Vit D levels are high.....that could explain it. The Vit D is an immunosuppresant )
When your D levels get down below 20 you could start to experience much stronger herxing......definitely when they're down below 12. I would suggest working the Vit D down before ramping....you don't want to get hit with a really strong herx.
All this is necessary for us to know how to advise you. Thank you.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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IngeD
Moderator
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Posted: Mon Jun 23rd, 2008 22:47 |
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Hi Ross. Thank you for posting. Sounds like the IP has kicked in nicely  and it can take a while before you notice it. Here are some links for you to study re what to do with mino and how to make sure to always keep your symptoms tolerable. Better to go slow than push yourself.
It is important that you become independant in medication management and gain experience by adjusting MP meds using your personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol.
As always, if our information does not provide the answer for you, please ask before you take action.
You may need to pick a 'signal symptom' to better assess your response to minocycline adjustments. If that symptom improves with an extra dose of mino, low-dose, high-frequency is likely to help. See How can I tell if the MP is working for me? Kind Regards, IngeD
____________________
Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08)25D6.4 (June09) NoIRs limited outings covered lo lux home Ph3
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CFS South Africa
Member in Phase 3
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Posted: Thu Jun 26th, 2008 17:29 |
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Hi There
Quick question - I'm looking at ordering my next batch of benicar. I'm looking to get a 6 month script as I live in South Africa and it makes more sense to buy in bulk. Will I be using Benicar thoughout the MP treatment? Just wanted to make sure as I don't want to order such a large quantity if it's not needed.
Thanks
Ross
____________________
CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Thu Jun 26th, 2008 17:39 |
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| yes you will be..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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CFS South Africa
Member in Phase 3
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Posted: Sun Jun 29th, 2008 19:13 |
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Hi There
Started MP 21 May
Started Mino 25mg every 48 hours 28 May
Started Mino 50mg every 48 hours 6 June
I've been dilligently avoiding light the past two weeks. I have had quite a big raise in IP - this last week was similar to the week before. I feel extremely fatigued (especially about 30-40 hours after mino) and I also have a lack of motivation and irritability (which is strange for me because I'm a highly motivated aNd driven person). Just coming to terms with IP and keep reminding myself it's only temporary and it's not me but the IP. Also had a bit of a cold the last few days, but seems to be easing off now.
MP meds: Benicar(votum 40mg) - every 6 hours, four times a day. Mino 50mg every 48 hours.
Palliative non-MP meds: 1mg dormanoct before a go to sleep
Light exposure: 1 hours sun exposure since last post (driving)
Symptoms:
Brain Fog - 6
Insomnia - 6
Flu like symphoms - 6
Fatigue - 7
Post exercise fatigue - 5
Swollen/sore glands neck/shoulders - 4
Pain in chest - 4
Pain in ears - 5
Sinus congestion - 5
Red/sore eyes - 6
Head aches - 5
Question:
In two weeks time I'll be heading overseas for a few weeks for some important business meetings in which I need to bring my A game. At the moment my IP is pretty strong buy tolerable. Do you think it would be a good idea to wean back down to 25mg mino every 48 hours while I'm away to limit IP or will it not make too much of a difference? I don't want to go backwards in my treatment, but I'd like to be feeling pretty good while I'm away - your thoughts would really help.
Regards,
Ross
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CFS 2 Years - Swollen Glands - Chest Pain - Flu like symptoms - Sleep problems - Sinus congestion - Headaches. 25D 29.7ng/ml (25 Nov 08) 25D 21.7 ng/ml(15 Aug 08) - 25D 52.4 ng/ml(30 March 08) - Non MP meds - 0.25mg dormanoct tablet each night
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