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Sunbeam
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Posted: Tue May 8th, 2007 01:39 |
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Hi , Thanks for the advice in the tests forum, I have read all the relevant material and my Doctor did put me on M.P.
I have been on the treatment for just over a month now and have just started on 50mg minocycline. I feel disappointed with my progress and wondered how long it would be before I could really identify an improvement. I do seem to feel worse every second day as you say but the symptoms are slow to receed. I have my noirs and have been out of the sun since Christmas.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Tue May 8th, 2007 02:51 |
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Sunbeam
Welcome to MP.com study site and thank you for posting. Thank you for filling your signature line.. When you can, please add further required details re meds start dates into your signature line to help Staff and others reading and replying < see this link for details to include. Your details enable us to assist you. Thank You ..
It is helpful to Staff for assessing your situation and replying, and for other Members for reading and understanding .. and for your own reference at any time, if you will please list your MP meds doses and schedules in an index format at the beginning of your message each time you post. thank you...
Your post has been moved to the Benicar and Mino forum and this will be where you can post your progress and any questions you may have.
Dr Marshall says: "All of those symptoms are caused by the disease. .... Your organs will be weak, that is caused by the inflammatory disease.
If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. The MP is a curative therapy, we kill the bacteria underlying the disease process so that the patient is returned to full health."
This is important for you to understand: The symptoms experienced are due to Immunopathology.
(HERX) Immunopathology .... What is it?
CHRONIC FATIGUE SYNDROME and Th1 inflammation: includes links to individual Member experiences of improving Health
LINKS to Member progress and improving Health
see the BENICAR Information Post at the top of the Benicar Forum so that you may familiarise yourself with the Benicar information and FAQs
The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
Checklist: basic links for MP
Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment..
I'm eager to get well. How can I speed up my progress on the MP?
Some find:
3 day dosing achieves more tolerable symptoms.
or 3 day dosing may increase immune response.
dont let symptoms go to intolerable, take your dose at a shorter time if necessary to hold your symptoms at tolerable.
You may wish to invite your Dr to join the
PRIVATE SECTION FOR HEALTH PROFESSIONALS
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
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Posted: Wed May 9th, 2007 02:48 |
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Benicar Q6hrly/ Minocycline 50 mg Q48hrs. CFS 6+yrs Neurological /muscle involvment
Thanks Barb and everyone for the time you all spend helping others.
I heard about M.P. last year but have only been on it for 5 weeks so I haven't really posted much.
Over the years my condition has declined and I spend all my time in bed now, dealing with dreadful symptoms which I can't get over anymore. Prior to this I could get better to a point, then eager to continue with life I would try doing things again, only to crash. I find it hard to know if what I feel since starting the Benicar is Herx or my normal symptoms so I presume it's herx as the symptoma are even more pronounced since I added the mino.
My Doctor is very sympathetic and has treated me for a long time, we both have cause for hope now. My husband is very understanding now and has taken over the role as carer since he retired. I am most greatful for his care.
It is hard for family members to understand and those who have no concept of what is happening to me expect that I could push myselfa bit more. well I did that.
The hardest thing is to accept life as it is and not as I would like it to be. I enjoy any little activity I can do, even if it's only reading or watching T.V. That is the way I keep my faith and my spirits up.
Thanks for yor reasurance Barb, I will try not to be impatient.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Sat May 12th, 2007 01:39 |
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Benicar 4hry during the day 6hrly overnight for 2 days. Mino 50mg every 2nd day. CFS fo 6years+ bed bound, muscle and nerve involvment.
I tried taking my Benocar 4hrly over the last two days. I''m not sure how it effected me but today the pulsating all over my body is not as bad. I thought I would continue doing that for a while, I hope thats O.K.
Somedays I don't feel like being on the computer at all but today is not so bad and I am reading others stories. I certainly don't feel so alone now. Thanks everyone.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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jrfoutin
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Posted: Sat May 12th, 2007 19:25 |
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Sunbeam,
You are right and glad you are reading more, sometimes reading other's posts is an eye opener about Th1. Also reading instructions given to others by moderators is helpful. Sometimes you can print out an especially helpful information set and read it offline if reading online is problematic.
Thank you for posting your meds at the top of your post. Very useful. Good for you, and you will find it helpful as you go back over your posts to see patterns.
Do post frequently, and you and your doctor may actually appreciate charting that can help you spot patterns in your own response to medication task set of learning your own immunopathologic responses.
Keep up the good work Sunbeam--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Sunbeam
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Posted: Sun May 13th, 2007 02:14 |
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Benicar 4hrly Minocycline 50mg 48hrly CFS. Neuro and muscle involvment. Bedbound.
Thanks Janet.
I will try charting, continue reading and posting when I can. It's good to see how others have progressed on M.P.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Tue May 15th, 2007 02:42 |
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Benica 4hrly during day/6hry during night CFS with muscular and nerve invovment- Bed bound.
I felt to ill to be on the computer yesterday, it's all just starting again today.
Took 50 mg mino yesterday. I seem to be constantly herxing.
I take panadol and one mersyndol before I go to sleep at night and usually manage with that.
Last night I woke at 4am took Benicar and the cells all over my body seem to vibrate. I took anothet 2 panadol and eventually went back to sleep.
The tightening of all my muscles continue and I feel I may be getting hot flushes again which I had not had for some time now.
I can't say I feel much relief taking the Benicar 4hrly. Should I continue to take it 4hrly?
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Tue May 15th, 2007 03:00 |
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Sunbeam
see this FAQ When and why should I vary my Benicar schedule? for some variations you may wish to try to assess which suits you best..
If your Dr agrees, taking the pain meds regularly is often a better way to keep on top of the pain.. see pain control link..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
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Posted: Tue May 15th, 2007 04:25 |
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Thanks Barb,
I think I'll keep 4hrly Benicar up.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Sun May 20th, 2007 06:57 |
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BENICAR 4-6HRLY MINOCYCLINE 75MG Q48HRLY CFS.6YRS.
Today I am taking benicar40mg 6hrly but I've been taking it 4hrly for a week. The pulsating and creepy cellular feelings I have been having have been constant for the past couple of weeks. Muscle tightening, pain and feeling ill have kept me off the computer
I had acouple of days where it all didn't seem so bad so I started on 75mg Minocycline and I have taken the second dose today. I will keep on that dose till I'm confident the herx is tolerable.
What do you think?
I have even walked around the house today.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Sun May 20th, 2007 18:33 |
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Thank you Sunbeam
Looks like all is going well.. has settled some..
Take care, all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
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Posted: Mon May 21st, 2007 00:27 |
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Thanks Barb,
Thats very reasuring, sounds like I'm on the right track.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Sun May 27th, 2007 02:47 |
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BENICAR 6HRLY MINOCYCLINE 75mg 48 HRLY CFS RESTING IN BED,
I haven't posted for a week but have been trying to follow everything strictly.
My herx has been constant all week and I have rested all the time, Sometimes have felt like reading or watching TV.
Herx consists of
Muscle tightening like cramps all over, worse in legs around the abdomen and rib cage,also ankles.
Nerve type feelings which seem to run along the spine the legs and arms, sometimes prickling. this also accurs in my scalp and face and effects all my joints.
I have tried taking Benicar more often but it didn't help so I tried taking 50mg mino on what was supposed to be my off day. That did seem to help a bit.
Yesterday was my day for the 75 mg mino. I felt a bit better so I got up for a short time to sit on the couch in the evening, but that made my symptoms worse
Today is a benicar only day and my symptoms are worse.
I hope I'm going in the right direction. Have you any advice?
I will try to post more often.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Sun May 27th, 2007 03:19 |
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Thank you Sunbeam
To assess the effect Benicar has for you... The effect can be seen more quickly by, if Dr agrees, taking some sublingually when you have the need to decrease symptoms..
As the mino 50mg inbetweener brought you some relief, you may wish to try that again if you need today. Let us know how you are going with the 75mg mino dosing.
Adjusting the meds in Phase One helps to gain experience with achieving tolerable. and for those who have had high level symptoms, a chance to know what tolerable feels like..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
Member in Phase 2
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Posted: Sun May 27th, 2007 07:06 |
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Thanks Barb,
I did take the extra 50mg mino around lunch time. The tightening became worse to begin with but now at 5pm it is easing a bit. I will keep on adjusting the meds and experimenting to see what works best,
Regards Sunbeam
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Tue May 29th, 2007 00:05 |
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Benicar 40mg 6hrly/ Mino 75mg Q48 hrly/ CFS resting in bed.
Hi all,
Yesterday I took the 75mg of mino as per regime and had a reasonably good day.
As I have been taking a further 50mg booster on my days inbetween the 75mg for a few doses I thought I would have today as a rest day to see how my body responds.
regards Sunbeam.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Sunbeam
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Posted: Thu May 31st, 2007 01:40 |
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BENICAR 40MG 6HRLY/ MINO 75MG 48HRLY/ CFS BEDREST.
Hi all,
I continue to herx constantly with
Tightening all over like tight wires running through my body.
Nerve activity all over which sometimes creeps sometimes prickles.
The constant body throbbing has eased of a bit now.
I haven't had the very ill feeling for a couple of days now and I'm wondering if it is too early to creep up to 100mg minocycline yet.
I'm still in bed but manage to get up for a shower and the occasional walk along the corridor.
Many thanks, regards Sunbeam.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Thu May 31st, 2007 02:56 |
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Thank you Sunbeam
Some take half Benicar when it is in capsules, by pulling the capsule in half and emptying the contents onto a spoon or mirror or saucer and divided.. You may find that 20mg inbetweeners are more helpful to you, when Q4H is not. The compounding chemist does also sell the 20mg capsules.
Quercetin can be helpful once established on MP, so you may wish to look into that as you will soon be looking into progressing to the next phase.
If Dr does wish to retest your 25D to check if it is near or below the therapeutic level of 12ng/ml there is no need to retest the more expensive 1,25-D.. How often should I test D levels? What are the target numbers?
see this FAQ Where can I find phase two and three? for information re sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information re Modified Phase Two meds and doses with Staff in phase 2/3 forum before going to your Dr.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
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Posted: Sat Jun 2nd, 2007 01:20 |
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Benicar 40mg6hrly/ minocycline 75mg QOD/ CFS bed rest.
After my last post, just when I thought I was up to increasing tbe mino to 100mg I crashed and felt really ill that afternoon and all the next day.
Symptomsi increased as usual.
Feet/ tingling and feeling every nerve prickling.
legs/ extras heavy with taught wires all over. Knees the same.
chest and abdomen and arms/ tightening and heavines.
Head and neck/ feel like being strangled/ scalp and face pricling as and moving as if some thing crawling.
Spine and back/ nerves tingling and tighteninglike ataught rope.
Decided to stay on 75mg mino till it settled again. I'm better today thank goodness. I did try to take 20mg Benicar between doses but I'm not sure if it helped.
I'll try 100mg later in the week then send for the questionaire. not sure how i feel about the Quecertin.
regards Sunbeam
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
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Posted: Sat Jun 2nd, 2007 01:31 |
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Sunbeam
There is no requirement to reach 100mg mino or to stay in phase one if you cannot achieve tolerable immunopathology trying to do so. Suggest filling your Questionnaire and returning asap, so that you may discuss with your Dr re progressing to Modified Phase Two. We recommend a lower dose of 2 antibiotics as preferable to pushing for the higher dose of one.
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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