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Vicki SA
Member in Phase 3
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Posted: Wed Jan 17th, 2007 08:20 |
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Hope,
What wonderful news! May your improvements continue.
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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jrfoutin
Research Team
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Posted: Thu Jan 18th, 2007 02:01 |
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Hope,
That is quite encouraging. You have had a glimpse of good things to come. There is still a lot of work ahead but I like to keep tabs on the good times and glimpses of better along with the challenge immunopathology brings so I can keep my perspective in balance.
The best part is knowing the good medical professionals on the board are eager to see you succeed.
I hope your progress continues to be positive, even though sometimes the work is not easy!--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, 10/08 25D6.9
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hellohope
inactive member
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Posted: Sun Jan 28th, 2007 23:01 |
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20mg Q3H mino 25mg every other day, 5mg aropax
Felt not too bad the past two weeks. Some strange different symptoms though. Had some pains in my face, stabbing pains in soles of feet and palms of hands. Lots of stomach pain this time, especially right in the middle of my stomach (belly button area) not sure if it's my liver. Fatigue waxes and wanes sometimes worse on other days, especially day after mino. Also had nausea, but more aches and pains than unusual. Weight has stabilised at 47kg and my period has returned.
Haven't been out of the house, so don't know the effects of that. Sit outside at night. Sleep has improved.
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Carole
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Posted: Tue Jan 30th, 2007 04:21 |
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Hello, Hope, and congratulations on your good news!
I'm glad to read about your improving days! There will be more bumps in the road as you progress, but please know that it is necessary as the pathogens succumb to the MP.
This link may remind you of what changes your body is undergoing--
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D.
You can access it at http://autoimmunityresearch.org/hormones.pdf
Hormonal rebalancing by your body is an essential part of the process leading to recovery.
Since this protocol addresses all systems of the body where the pathogens have evaded the immune system, one will experience new immune responses plus revisit previous symptoms again and again.
Best wishes as you progress to wellness! Take care, Hope! . . . Carole 
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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hellohope
inactive member
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Posted: Fri Feb 9th, 2007 10:43 |
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| Hi MPers Taking benicar Q3h.Started mino at 50mg every 48 hours as from 6/2/2007.Taking aropax 5mg every day.Had increased fatigue,muscle aches,some dizziness,sharp pain in stomach.Nothing i cant handle,body weight ok.Wearing noirs all the time,total natural light avoidance.Thanks Hellohope.
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Mon Feb 12th, 2007 10:04 |
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50mg mino every 48 hours benicar 3QH
Awful day today,  blurred vision this morning, only lasted about ten minutes....then had detached head rest of day, with slight headache. Also had pains in ankle and stomach. Sore eyes and just couldn't be bothered doing anything. My brain too seemed really slow, really weird as it's been so attached lately. Four numb fingers in right arm lasted about five minutes. Then just disppeared, like all the horrible symptoms do....On to better health !!!!!
Hello hope xxxx
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Carole
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Posted: Mon Feb 12th, 2007 16:48 |
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Hello, Hope! I'm sorry to read that you are not feeling very well today!
If I understand your posts correctly, it sounds as though you are dosing Benicar every 3 hours. Does that mean 20 mg. every three hours? If so, perhaps your blockade is not sufficient at this time for your immune response.
I take 40 mg. Benicar every 4-6 hours (but definitely less than 8 hrs.), with 20 mg. in-between if needed. Have you tried that strategy yet? If your physician agrees, perhaps that alternative might make your immunopathology more tolerable. However, I feel that the 20 mg. in-between, with the four-hour 40 mg., should be saved for the really intolerable times.
Best wishes and take care as you proceed to wellness! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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hellohope
inactive member
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Posted: Wed Feb 14th, 2007 05:36 |
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20mg benicar 3QH 50mg mino
Still herxing...took my 3pm and about ten minutes later my heart started missing a few beats....shook me a bit as I hadn't had any for a while...was going to take an extra dose, but it went off as the 3pm kicked in. Do you think I should go to 2 hourly just incase or see how it goes?
All other symptoms have been minimal, slight dizziness, aches, fatigue etc.
Thank you,
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
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Posted: Wed Feb 14th, 2007 05:42 |
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Hope
If your symptoms are present at any time -and your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 20mg Q2H or 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
If you have a Dr Rx anxiety med or pain med is often helpful...
: rest, relaxation, and hydration etc.. Tools to check:
Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is working to capacity.
cut all stress as much as possible
re dizzy: Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
: keeping maximum eye/body protection is helpful.
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
check with your Dr if you are concerned..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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hellohope
inactive member
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Posted: Sun Feb 18th, 2007 01:19 |
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20mg benicar every 3 hours 50mg mino every second day
Hi all, Hi Aussie Barb,
Thanks for the tips....still going ok on the three hours. Had alot of head pain yesterday on and off all day but tolerable. With the light factor, I haven't been out of the house at all....due to the very hot weather here. Going to wait another two months, until winter hits. I have three safe rooms in the house where the lighting is less than 30lux, and the windows are panda filmed.
I have lost weight again, since more herxing has started....I find the diet really hard as I have alot of allergies. I can't eat nuts, and some other foods don't agree with me either. I feel hungry all the time and it drives me insane!
I guess now being more active than I was before I'm burning more calories, but aren't taking enough in. I'm eating every two hours but nothing seens to work.
My doctor is ecstatic with my progress, and I've even bought an electric scooter
Bye all,
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Carole
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Posted: Sun Feb 18th, 2007 03:33 |
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Hello, Hope!
I'm very glad to hear that the immune response is becoming more tolerable and that your doctor is ecstatic about your progress! That makes two good reasons to celebrate!
Have you checked these links out for ideas? FOOD TIPS has Links to All Food Topics--Page 2 re weight loss and appetite
Keep up the good work, Hope, and best wishes! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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Vicki SA
Member in Phase 3
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Posted: Sun Feb 18th, 2007 07:32 |
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"My doctor is ecstatic with my progress, and I've even bought an electric scooter"
Good to hear Hope!
And I can see moonlight outings coming up! Not too far to go until the sun will go to bed at a respectable hour
Cheerio VickiLast edited on Sun Feb 18th, 2007 07:33 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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hellohope
inactive member
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Posted: Fri Feb 23rd, 2007 08:06 |
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HI all,
Just an update for this past week...a strange week. Had some breathlessness which has been unusual for me...still dosing benicar at 20mg every three hours and mino 50mg every second day....other symptoms include chest pain, dizziness, lymph pain, head pain, bad fatigue, pain in right thumb, stomach pain.
Yesterday I felt like a bubbling laboratory, my stomach was so noisy for about three hours non stop. The only other thing I've had is diarreha on and off this week which also is unusual for me as I'm always constipated normally.
Not really concerned about anything other than the breathlessness, as it came on suddenly wednesday morning, I actually woke up really really tired, which I haven't done for weeks. It's still realy hot here weather wise and I think that is knocking me around a bit, didn't sleep too well a couple of nights, but otherwise sleeping very very well, normally 11 til 6am!!!!!!!! And only taking 5mg aropax.
Take care all,
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
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Posted: Fri Feb 23rd, 2007 10:44 |
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Hope
I note that you have been on mino 50mg level for 17 days.. Sometimes the symptoms do increase when an increase of meds is due..
To check that you have tried all other avenues first. check adjustments to meds doses and /or schedules, and also the length of time you have been at one dose level..
see I'm eager to get well. How can I speed up my progress on the MP?
and information at these links: Increasing Tip and symptoms
Breathing Tips has links to all the breathing/ respiratory Information.
What should I do for my stomach problem?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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hellohope
inactive member
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Posted: Tue Feb 27th, 2007 23:48 |
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Hi All,
Just an update. same dosing schedule at present. 20mg benicar 3 hours 50mg mino every second day.
Had a rough few days with my hormones again, some months are better than others for some reason, can't work it out. I'm generally worse the week before my period.
Mainly bad fatigue, lymph pain, a few aches. It's the fatigue that has been the worse. Other than that not too bad.
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Carole
Board Staff
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| Location: | Indiana USA |
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Posted: Wed Feb 28th, 2007 01:53 |
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Hello, Hope!
Did you and your physician confer as to when you would ramp the Mino and/or adjust your Benicar dosing? If not, please refer again to the Feb. 23 post from Barb. Also, step #8 in the Phase 1 document will serve as a guide when you are ready to proceed.
Best wishes and take care as you continue your MP journey! . . . Carole
____________________
PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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hellohope
inactive member
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Posted: Thu Mar 1st, 2007 06:31 |
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Hello Carole and everyone,
Yes spoke to my doctor, but he said to leave my dosing as is. I will just get over the hormone period, and then possibly try the mino at 75mg. See how I go, as I don't seem to be getting much herx. The fatigue happens very month, although seemed worse this month. But that could be any number of other factors, ie weather, too much exercise or brain work etc.
But I am very happy with my progress and even when the symptoms come I know now that they will go away !
Cheers,
Hellohope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Sun Mar 4th, 2007 00:20 |
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HI All,
Just an update, symptoms seem to be minimal. Had chest pain, slight head pain, fatigue is worse on second day still on 50mg mino, will go up to 75mg once hormones have finished in about 3 to 5 days. 20mg benicar every three hours working really well for me. Had a few arythmias, mainly skipped beats nothing major. Brain is still functioning well. Had blood tests this week, routine for electrolytes, blood picture, kidney function etc. Getting tested for lupus only because they've never done it and doc thought he'd do something different.
Hopefully all will be negative and I will be able to continue. Take care all oh before I go I had a wonderful weekend, playing board games in the lounge with my son!!!!!!!!!!!
God Bless,
Hellohope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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hellohope
inactive member
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Posted: Thu Mar 8th, 2007 23:04 |
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Dosing at 20mg Benicar every 3 hours extra when needed 75mg mino every second day.
Hi All,
Update on my first two days on 75mg....symptoms didn't really come on until the second day. Had sore back, leg pain, chest pain and a cardiac herx. Woke up feeling like been hit by a truck and didn't sleep very well. Will see how it goes.
Feeling tired, a bit lethargic and appetite down. Will take extra rest this week. I can't even believe I've taken 75mg, at the start I never thought I'd get anywhere with all the trouble in the beginning. It has been worth all the heartache
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Vicki SA
Member in Phase 3
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Posted: Sat Mar 10th, 2007 03:48 |
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G'day,
Glad to hear that you are able to ramp the abx! Don't be afraid to drop back to 50mg as needed. You can go up and down until you are sure that 75mg is ok and tolerable.
No rush - herxing/IP is healing!
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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