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Big John
Guests visiting Phase 1/2/3
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Posted: Fri Nov 5th, 2004 06:12 |
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Hi Reenie! 
Yes I am weaning... having to adjust my drops so that I can at least navigate. I am down to drops about every 6 hours.
John
Last edited on Fri Nov 5th, 2004 06:13 by Big John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Fri Nov 5th, 2004 06:15 |
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November 4, 2004, Day #43. Day #34 Mino.
Morning brought the head cold symptoms. Pressure behind the eyes, stiffness in the neck and shoulders, and the hip and knee morning stiffness. Today was an off Mino day. I have decreased my Allipurinol to 50mg. For a week. In the next couple of days I will wean the rest of the way off. I have used Eye drops sparingly today, about every 6 hours. evening brought decrease in hex symptoms. Neck stiffness has ended as has shoulder discomfort. Eyes are quite blurry, however I am able to navigate around the house. Eye pressure and head congestion are gone. Not too much fatigue today, energy level was good. Went out to dinner this evening and was quite uncomfortable. I think I was in sensory overload. Bright lights, noise, various tastes, people running around, just way more than what I could take. And then there was the bill for the meal!  Gonna eat at home from now on!
 Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Sat Nov 6th, 2004 05:22 |
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November 5, 2004, Day #44. Day #35 Mino.
Morning passed without me participating. Woke in the afternoon, refreshed, relaxed and ready for another round of Mino. Took 50mg. Mino at 1300. Afternoon presented little problem. Did notice slight increase pain in hips and knees. Energy level was good today, Evening brought little change. Eyes were the typical blurry, hips and knees are about normal pain. My ability to focus was good today. Felt refreshed and energetic even after Mino. If I continue to not hex at 50mg. I plan to stay here for a while, and just relax. It was pointed out to me that I need to be as good at taking advice as I am at giving it!
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Sun Nov 7th, 2004 04:35 |
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November 6, 2004, Day #45. Day #36 Mino.
How many doses of Benicar does it take before John remembers he took it? Well last night it took two . Friends say that my memory is the second shortest part of me.. Well to combat that I usually put my bottle in a certain manner ie: upside down in AM, childproof at 1500 and arthritic at 2300, well to make the story short (like my memory) I took two Benicar within 1 hr of each other at 1500. DAH!!!  took blood pressure every 15 minutes for the next 2 hours. I can report no real change in bodily functions, except for the headache from hitting myself upside the head for being so damn stupid.
Fatigue continued most of the day, I was fine as long as I just sat down. If I tried to do anything seemed like my mind stayed in the chair, couldn’t focus. Muscle and joint involvement was quite pronounced today. Knees and hips were tender, neck and shoulders were painful. Brain fog was quite pronounced. My one saving grace was my eyes are no worse with drops every 6 hours. Today was an off Mino Day.
day!
 If a one learns from their mistakes I am the smartest person in the world.
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Nov 7th, 2004 04:43 |
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Dear John,
I would never manage to remember what I was up to w Benicar either.
I have my trusty timer which EveryOne has heard about by now 
and I have a pillbox ......... albeit w the days of the week on it... and once per day ahead of time, I place my designated doses into that...... . @ 1 dose per compartment.
otherwise I would not know either... so once again we are all in good company here  ....
good to hear about your eyes.... Best, Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Big John
Guests visiting Phase 1/2/3
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Posted: Mon Nov 8th, 2004 00:46 |
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Hi Barb!
So was that an "I told you so"? I went out today and bought a pill case.. The only problem is it has the days of the week on the cover. Now instead of just remembering what pills I have taken and what I have not, now I also have to remember what day of the week it is.
Last edited on Mon Nov 8th, 2004 00:47 by Big John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Nov 8th, 2004 00:48 |
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Sometimes I wonder why  xox
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Big John
Guests visiting Phase 1/2/3
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Posted: Mon Nov 8th, 2004 01:25 |
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November 7, 2004, Day #46. Day #37 Mino.
Woke to the words "Honey Doo Day". Umphhhh. Due to pressure from above I decided to forgo Mino today in favor of my favorite pastime. Unfortunately the pastime was not football.. After a strenuous day of activities I managed to catch up on my rest. I figure I better get what I can, now that Bush has been reelected and has ideas for revamping Social Security I will probably be out on my scooter delivering mail. Or welcoming all you fine people at the local Walmart store.
Seriously, take my disease... Please!
Anyway as you might tell today I am feeling good. No Mino and just Benicar every 8 hours. Decided to listen to the bug in my ear and just "Smell the roses". Of course it’s fall here and the roses are dead. But I am well. Hips and knee are painful, but my mind is awake and I could definitely let my mind overload my body today!
PS. Ended my Allipurinol today, another positive change!
Last edited on Mon Nov 8th, 2004 01:26 by Big John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Tue Nov 9th, 2004 05:02 |
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November 8, 2004, Day #47. Day #38 Mino.
Today was the third day without Mino, Pretty much most of my "honey doos" are done so tomorrow I will resume my 50mg. Mino at noon. Afraid I got some sun exposure today, did wear the NOIRS and tried to coverup, but felt pretty drained by the end of the day, I’m sure some was from exertion, but some was sun. anyway, going to be kind to myself the rest of the week and just relax, Eye pressure was rough today as was the blurring, continued to do the eye drops every 6 hours. neck stiffness was apparent today as well. Knee and hip was normal, considering all the work I did I was impressed. Just wish these eyes would straighten up. Anyway, not a bad day all considered.
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Wed Nov 10th, 2004 04:30 |
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November 9, 2004, Day #48. Day #39 Mino.
Woke this morning feeling rested. Took some time today and just relaxed. body stiffness was apparent as was brain fog and fatigue. Made brownies and watched TV. Took 50 Mg. Mino at noon and within 2 hours I actually felt better? Go figure.... I had energy, brain fog cleared up and I was able to finish several projects that I had started. I have no explanation. Maybe since I had been off of Mino for 4 days had something to do with it. Evening brought the usual increase in hip pain and knee pain. Blurry eyes continue. Still using drops every 6 hours and eyes seem to be stabilized. By stabilized I mean they are not getting blurrier. I still cannot drive or navigate outside the house and use a magnifying glass to read and the like. Shoulder stiffness and neck pain are about average.
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Thu Nov 11th, 2004 05:47 |
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November 10, 2004, Day #49. Day #40 Mino.
Today was an off Mino day. Woke rested, noticeable pain in hips and knees. No noticeable Hexs today, energy level was good, replaced the batteries in my scooter, it had lost its poop... runs so well now I am gonna put racing stripes on the sides!!! Not much to report, eyes are blurry, except for them most everything else is good! Decided to stay at 50mg. Mino tomorrow just cause I want to... Increased my eye drops to evry 4 hours, they are getting a bit intolerable.
Day!
Last edited on Thu Nov 11th, 2004 05:48 by Big John
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Fri Nov 12th, 2004 07:39 |
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November 11, 2004, Day #50. Day #41 Mino.
Took 50mg. Mino at noon. I know I am supposed to feel worse when I take Mino, so how come I feel better? This is the second time I have noticed this. About 2 hours after taking it I begin to have more energy and am able to focus better. Stiffness also decreases, yeah I know I am not typical. Not much to report today, supposed to go to the eye Dr. tomorrow, I know he isn’t going to wait any longer to inject my eyes.. Was hoping by now there would be some improvement from the Mino I am quite sure this inflamation is caused by a bug. guess the Mino just isn't gonna kill it! Besides the eyes and the typical stiff hip and knee all is pretty good. Probably will increase Mino to 75mg on the 13th.
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
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Posted: Fri Nov 12th, 2004 13:42 |
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Big John wrote: I know I am supposed to feel worse when I take Mino, so how come I feel better?
Actually John, I think this has started happening to me too. Recently I've noticed a tendency to feel a bit better (less achy) a few hours after mino, then quite horrible the next day, and still somewhat bad on the subsequent day until I take mino again.
Marianne
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Big John
Guests visiting Phase 1/2/3
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Posted: Sat Nov 13th, 2004 05:23 |
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Hi Marianne!
Thanks for verifying my observation. You were the only one to post publically, however, several other emails indicated that they too found that to be true at certain levels of therapy, at least I know it is not just something unique about me!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Sat Nov 13th, 2004 05:27 |
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November 12, 2004, Day #51. Day #42 Mino.
Today was an off Mino day. About a repeat of yesterday, hip and knee pain was about average. Shoulder and neck pain increased as evening came on. Brain fog was light today and fatigue was light. Was able to go to lunch with a good friend I have not seen in 4 months.. I consider that an accomplishment. Although I didn’t drive I was told if I didn’t shut up and quit complaining I would be! What you think? That tells me that she has enough faith in my ability that she was going to let me drive???? Or maybe she was going to walk, anyway I shut up!
Thanks to those of you who noticed as I did that taking Mino sometimes makes us feel better. Although I did not get any response from "professionals" that tells me that we better just keep this to ourselves. We might be herxing or hallucinating! Sometimes I wonder how much these posts are really reviewed. Anyway I got myself a girlfriend and I have myself several pen pals from my posts so I guess soemone is reading these!
My hope for all of us is we get better soon, but until then we might as well enjoy ourselves along the way.
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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| Posts: | 17283 |
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Posted: Sat Nov 13th, 2004 06:44 |
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Big John,
Minocycline has a maximum Herxheimer effect as the dosage dacays away to zero. That accounts for your feeling of wellbeing the day you take the mino and your symptom increase the next day.
Best,
Meg
P.S. The professionals may be a bit slow but we're watching.
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Big John
Guests visiting Phase 1/2/3
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Posted: Sat Nov 13th, 2004 19:00 |
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Hi Meg!
Thanks so much for the reassurance for myself and I am sure many others. It is important to know that our posts are really reviewed. Many times our MP Dr. are many miles away and/or are not quite as familiar with the protocol as you all, Its very comforting to know that we are being watched over! We can offer each other support, however for the expertise we look to you!
John
Last edited on Sat Nov 13th, 2004 19:38 by Big John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Sun Nov 14th, 2004 05:25 |
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November 13, 2004, Day #52. Day #43 Mino.
Took 75mg. Mino at noon. Within 2 hours I was feeling the effects of the increase. Neck pain and shoulder stiffness increased and knee and hip pain were also greatly enhanced. Eye blurriness continues, afraid I will have to increase drops considerably as I am continuing to get worse. I canceled my appointment with the eye doc for a few weeks. Hopefully things will change! Noticed some tightness in the chest in the evening as I began to gas up, forgot probiotic and fiber today. Fatigue was also a problem several hours after Mino and continued all evening. Eye pressure was noticeable in AM, but ended early afternoon. Still have an itching feeling on my sternum skin is also red there, seems to be in the cartilage. Introduction of an additional 25mg. Of Mino has been pretty benign all considered.
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Big John
Guests visiting Phase 1/2/3
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Posted: Mon Nov 15th, 2004 05:34 |
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November 14, 2004, Day #53. Day #44 Mino.
Today was an off Mino day. Increased eye drops to every hour, had enough of the blurry life.. Stiffness in neck & shoulders continued. Woke up rested and comfortable. Morning stiffness was tolerable. Knee and hip pain was about average. Fatigue was evident as was brain fog, both were tolerable. Evening brought some increased fatigue inability to focus for very long. Hard to even spell easy words. Guess I am kinda out of sync. Energy level was good today and I was able to get some chores done. Eye pressure once again increasing with increase of drops. Not a bad day!
Day!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Tue Nov 16th, 2004 05:56 |
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Hi John,
I know you only use your drops when you need them, but I'm wondering... (Reenie ponders here)
Is there a non-steroidal type of drops you can use?
The reason I ask is, ppl are told NOT to proceed to Phase 2 while on steroids except if assessed for use for necessary metabolic replacement. I don't know how your eye drops will be assessed for this.
I'm currently on 2.5mg of Cortef which is equivalent to about .6mg of Prednisone and I have to wean off of it prior to proceeding.
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