 |
| Author | Post |
|---|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Nov 16th, 2004 07:01 |
|
Hi Reenie!
Thats a good question, I have had no relief from the protocol for my eyes. I was getting ready to post other questions maybe Dr. M or someone might reply. I have other questions too, I will post tonight. If that is the case I will have to do what I have to do, I will work it out, Howver I will be quite confined. I am quite sure the inflamation is caused by bacteria as is most of my problems, however I don't think the Mino is the right ABX for that particular bug. Hoping that the Zith will kick their butts. I keep putting off the eye Dr. cause I know he is gonna want to inject them again with a cortisoid. Kinda walking the fence right now hoping I don't fall. 
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Nov 16th, 2004 07:02 |
|
November 15, 2004, Day #54. Day #45 Mino.
Took 75mg. Mino at noon. Within 2 hours back to the hexing... The old neck stiffened, both right & left knees ached, left hip pain increased, could hardly get off the couch. Fatigue followed and brain went on holiday. Early evening most complaints began to mellow. Late evening I had energy back and was able to focus. Pain in joints subsided, neck pain still continued, however it was much less intense. I am noticing an increase in the popping and clicking in my knees, kinda like there is increased space in the joints, my assessment is that with decrease in inflamation of the joints there is more room in the cartilage. Also tendons are less tender, I suspect that since they are no longer inflamed and swollen they are stretched too. Just an observation and guess. I am also noticing the same popping and clicking in my neck. Tenderness in my left ribs at the tips where the cartilage connection is. Sternum is also tender and itching... Eye blurriness continues. My hope is if I can continue just using drops and put off the retinologist until I start Zithromax that maybe will reduce the inflamation and alleviate the cause of the blurriness. I hate to continue drops but have little choice. Went to my PCP today he is concerned about blood pressure. It was 173/115. During the MP it has averaged 160/95. Pre MP BP was 120/80, with Zestril & a small dose of hydrochlorothiazide. His position was that he would like to see me add the small dose of hydro back into my protocol, I told him I would post and see what the consensus was. Will the hydro interfere with the good results I have had from Benicar and Mino? Just thought I would ask. Considering how it started out the evening was back to normal all in all not a bad day!
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Tue Nov 16th, 2004 20:19 |
|
Ask Doc if he will allow you to use a beta-blocker, rather than the hydrochlorothiazide, it will be easier on your kidneys and does not interfere with the MP.
..trevor..
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Nov 17th, 2004 05:48 |
|
| Thanks Dr. Marshall for taking time to reply. I will talk with PCP Dr. about beta blocker instead.
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Nov 17th, 2004 05:49 |
|
November 16, 2004, Day #55. Day #46 Mino.
Today was an off Mino day. Few hexs to report. Stiffness in shoulders and neck persisted. Pain in knee and hip was about average. Bit of fatigue in afternoon after some pretty strenuous activity. Brain fog was minimal even after activity. Eyes are about the same, drops have started to taper to every 2 hours again.. Knee and neck popping continues with normal movement. Bit of eye pressure this evening.
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Thu Nov 18th, 2004 04:59 |
|
November 17, 2004, Day #56. Day #47 Mino.
Awoke feeling rested, and energetic. Today I had another glimpse of heaven. Got up to walk to the kitchen and had absolutely no pain in my hip or knee, I could not believe it... Absolutely no pain I could walk without holding on to something, or without limping and throwing my weight to the left side I was awestruck! I got my drink then walked again without pain to the couch. I set down my drink and decided to see if it would continue, appx 2 minutes later the pain started to return. I had almost 5 minutes without any pain. I have not experienced 5 minutes without pain in over 7 years. What a gift...
Took 75mg. Mino at noon today. Within 2 hours typical hexes returned. Neck and shoulder pain increased, knee and hip pain increased. Fatigue set in and brain fog was back. By evening most symptoms were mellowing out. Still obvious, but tolerable. Did some cleaning today and Moved my monitor as suggested by my Chiropractor so that I was not always looking down. Don’t know if it makes a difference, but my desk is clean.  With this morning's epiphany a great day!
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Fri Nov 19th, 2004 05:47 |
|
November 18, 2004, Day #57. Day #48 Mino.
Pretty much an uneventful day. Hip and knee pain was average. Neck pain increased as evening progressed. Little or no noticeable hex. Will probably try another dose of 75mg. Mino tomorrow at noon. Just to see for sure that the hex has stabilized. Noticed a good amount of energy today and little brain fog. Who would have thought I was complaining cause nothing is going on? Go figure!
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Sat Nov 20th, 2004 05:35 |
|
November 19, 2004, Day #58. Day #49 Mino.
Morning was uneventful, decided to increase to 100mg. Mino today. Within the typical 2 hour window Neck pain increased and hip and knee pain increased, by evening everything once again had settled down. I have decreased my eye drops to every 2 hours and will continue to wean off in the next week. It is so cool not to have to split capsules...
Guess what? Can you guess? I found my right ankle bone! And my right knee cap! Whooo Hoooo! OK, little things amuse little minds. I have not seen them in years! There has been such swelling in both joints that there was just this big round blob. Well today I was able to see the outline of a knee cap and a ankle bone... Doesn’t that just wanna make you send me a present? However, I will accept cash. I’m saving up for a turbo for my scooter!  Evening was comfortable.
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Sun Nov 21st, 2004 04:15 |
|
November 20, 2004, Day #59. Day #50 Mino.
Well another day another hex.. Is this protocol great or what. It is so cool to be able to measure your own progress, and take a active part in the decision process. Obviously, there will always be some who would prefer to be told what to do and others who will figure they know best and follow a different road, but the wonderful part is that they can... Think about this for a minute if you want to fail you can.. If you want to tell yourself that this program won’t work for you then that’s cool too! Go find something else! If we all had the same taste then we would all be driving Volvos and walking around with a cell phone in both ears. Then there are the intellectuals, by the time they are done "investigating" and "networking" we all will have moved on. For those of you who read this and find offense maybe you should ask yourself "is this my stuff or his?" get to know yourself better..
An uneventful day, spent some of it rumbling through worthless posts from stupid people.. Taking time from good hearted people who are way too mellow and polite in my opinion. An off Mino day, guess I have a lot of energy and am way too wired.
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Nov 23rd, 2004 06:54 |
|
November 21, 2004, Day #60. Day #51 Mino.
Took 100mg. Mino at noon. Not much to report, typical increase in pain in hips, knees, and neck and shoulders. I have notice a lump, left of my sternum that itches like crazy.. It seems to be a small maybe cyst, never noticed it until it started driving me crazy.. Beyond that my attitude sucks and I think I am just going to sit here at 100mg for a while and veg out. (My word processor doesn’t like the word veg.. Says its not a word.) So in that case I am just going to goof off (likes that one!) Screw around, do nothing, yes I have a right to be worthless once in a while or all the time if I CHOOSE! Ok, back on track. Evening brought much the same eyes are weened down to 1 drop every 2 hours.
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Nov 23rd, 2004 07:23 |
|
November 22, 2004, Day #61. Day #52 Mino.
Today was a rough one.. Up till this point I have had little hex on the second day, usually several hours after taking Mino I begin. Today however, was the exception. Woke up very sore, with knee and ankle swelling, the cyst on the sternum was about to drive me crazy.. Thought about taking a knife and just cutting the damn thing out.. But the wife won’t let me have knives any more, she also hid all my guns.. All I have left is a box of suppositories and a roll of toilet paper.. Gives you an idea where my life is going..  Evening was also a pain, literally.... I forgot to take my Benicar at 1500 and about 1800 was suffering something fierce. Dahhhh. Welcome to my reality! Oh Yeah! Today was an off Mino day! I also tapered my eye drops to every 3 hours! Whooo hoo!
 Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Nov 24th, 2004 07:28 |
|
November 23, 2004, Day #62. Day #53 Mino.
Decided today to hold on mino until after Thanksgiving. Have to cook and entertain so I had to make a choice. Still had a little hex today without Mino, maybe a bit left in my system. I did notice much pain and discomfort last night and continuing on into this morning. Evening was uneventful. Continuing to wean eye drops will decrease to every 4 hours tomorrow. Will continue Benicar every 8 hours.
Day!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Wed Nov 24th, 2004 21:01 |
|
Hi John,
It sounds like you're "getting your money's worth," out of the 100mg! 
I'm so glad you're getting those eye drops weaned down. It might have some correlation to your level of herxing, eh??? ALL GOOD.
Please be sure to keep the lights low in the house, or cover up and wear your NoIRs while entertaining. Happy Thanksgiving!
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Wed Nov 24th, 2004 21:17 |
|
John, I was thinking of you, & how the mino has also made you feel better after a break from it, so wondered if you want to or need to keep a balance of mino to keep you feeling weller without herxing, maybe could try 50mg to carry you thru.. ?? you will know best what you want to do. have a Great Thanksgiving xx Barb 
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Nov 24th, 2004 22:19 |
|
Hi Reenie and Barb!
First, Reenie! When I said that I was going to be entertaining I did not mean that I was going to be "funny ha ha" entertaining! I meant that I was going to have friends over for dinner. It was quite assuming of you to fingure I was going to be "funny ha ha" entertaining... Suggesting that I wear my NOIRS.. Next you will want me to do a dance on the table.... Control yourself, please!
Barb!
2 days I decide to take some time off and you are wanting me to just cut down the Mino.. Next you will want to dance on the table too, only without any clothes!
Thanks for your suggestions! I appreciate all that both of you do for this Web Site and hope that you both have a great Thanksgving... If they have Thanksgiving down under!!! If you don't have a turkey Barb you can always find one here! Or maybe you could poach a Kangaroo and call it "poached pouch"
John!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Sat Nov 27th, 2004 06:27 |
|
November 26, 2004, Day #65. Day #56 Mino.
After a great holiday I was back to business today. During the last three days I have been doing Benicar only every 8 hours and taking a break from the Mino. Tomorrow at noon I will reintroduce the Mino at 50mg. Rather than 100mg. and evaluate the hex. Last three days of being on Benicar only have been good,. The body was a bit confused, scheduled day to dose I had a whopper of a head ache and lots of sinus pressure. I have also been weaning down eye drops and that might have been the cause, either way I was pretty much incapacitated for the morning. Evening brought resolution and since that episode, the rest of the time has been nice. I noted a great increase in energy, mind was much more able to focus, stamina was greatly increased, pain in knees and hips was moderate even under the increase of expectations of entertaining, cooking, etc. Neck and shoulder pain was mild, maybe because I had not spent much time on the computer. Eye drops are now at 6 hour intervals and vision is no worse. Sleep was a bit off, possible due to the extra energy. I was not sleeping as well. I also noted fast recovery when tired. I could work several hours focused, take a rest or nap for 1 hour or so and return energized and focused once again.
Three days of holiday have definitely reinforced my opinion toward being kind to oneself. Like everyone else I am in a hurry to get well, maybe at the expense of being aware of my psychological well being. I won’t get into Pavlovian theory or Psycho dynamics, however we as individuals have learned to succeed, we are driven to get the job done, sometimes no matter what the cost. Many exhibiting autoimmune disease are over achievers, Which reenforces my opinion that there needs to be a balance in our protocol. Week after week of hexs (herxs) takes its tole on the strongest of will. Coupled with a hormonal roller coaster can really cause unnecessary stress. This stress can be exhibited physically or psychological. Pain, anger, depression, frustration, sleep disturbances, can all be an indications of being over stressed.
My point to this rambling is that if you are to the point of being over stressed and you are frustrated, depressed, or the like, you have a choice and you are in control. Take some time to regroup, gather your energy and enjoy a holiday as I did. Don’t let your frustration force you to stop the protocol or find fault with it.
One of the greatest elements of the Marshall Protocol in my opinion, when done properly you decide when to ramp up on antibiotics, you decide when to take a break, you decide your comfort level, and above all you decide how you will treat yourself. What say You?
Last edited on Sat Nov 27th, 2004 06:27 by Big John
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Mon Nov 29th, 2004 04:32 |
|
November 28, 2004, Day #67. Day #58 Mino.
Took 50mg. Mino at noon on 11/27. Slight reaction in hips and knees. Neck and shoulder pain increased in evening. Today I noticed no hex symptoms and energy level was good, normal pain in hips and knees and pain in neck and shoulders was normal as well. Will return to 100mg. Dosage tomorrow at noon. Will be visiting MP doc this week and have requested info on phase 2 from Meg. Eye drops are weaned to every 8 hours and will end on Wednesday 12/1. Whooo hooo! 
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Mon Nov 29th, 2004 17:34 |
|
Big John says, "Eye drops are weaned to every 8 hours and will end on Wednesday 12/1. Whooo hooo! "
Hey John, that's good news!
I just weaned off of Cortef, as of tomorrow morning. I got the "go ahead" from the endo, who's working with me on my endo issues, while I progress onto Phase 2 soon, too. My adrenals are slightly weakened, but I'm within a close enough to normal range for the purpose of stopping the supplementation. My hopes are that the MP and time off of the steroids will eventually get my adrenals to function better again.
I was noticing you're taking Benicar q8h. Have you considered trying q6h, which would most likely give you a better blockade so that you can progress w/less sxs?
By taking Benicar q6h, you'd be taking one more pill in a 24hr period. It may make a big difference in how you feel, since the q8h is the minimal blockade. Just some food for thought.
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Mon Nov 29th, 2004 21:32 |
|
Hi Reenie!
Congrats on weaning too! Thanks for the post reminding me of the q6 on Benicar. I also have quercitin ready if I need it, however, I will save the "big guns" for now, since I am disabled I don't have any real structure left in my life and am able to be flexible. If I get a hex then I just go with it..
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Nov 30th, 2004 05:01 |
|
November 29, 2004, Day #68. Day #59 Mino.
Returned to 100mg. Mino. no noticeable hex increase today. Unusual, usually I have a larger hex on day 1 than 2. I guess I will see what tomorrow brings. Hip and knee pain was average. Neck and shoulder pain about normal too. Did take a 2 hour nap in afternoon, woke refreshed and focused. Energy level today was good. Went out and played in the snow with my little Yorkie.. He definitely still has more energy than me!
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
|
|
|
|
|
