 |
| Author | Post |
|---|
Big John
Guests visiting Phase 1/2/3
|
Posted: Tue Oct 12th, 2004 05:35 |
|
Hi Carol,
No I did not get D metabolites done.. My Dr. went way out on a limb for me just to prescribe Benicar. My health plan is quite unreasonable at times. I had to fight with them to pay for my meds, didn't want to rock the boat too much. I will say that I am bothered by sunlight and do respond unfavorably when outside. I am following the instructions same as Sarc folks right now. Thanks for your interest, I'll keep you posted!
John
Last edited on Tue Oct 12th, 2004 06:23 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: Tue Oct 12th, 2004 06:17 |
|
October 11, 2004, Day #19. Day #10 Mino.
Time 0730 BP 145/88. Pulse 91. Back to sleep.
Time 1500 BP 144/92. Pulse 67. Morning was uneventful, went shopping today since it was raining. Able to ambulate pretty well. Took 25mg. Mino at noon, just vegetated most of the afternoon, Pretty much a average afternoon, I do notice that eyes are blurring a bit more, I see the retinalogist next week I bet he is going to inject my eyes again. YUCK....
Time 2300 BP 158/98. Pulse 78.. Evening arrives with anxiety and increased stiffness in my neck & shoulders. Brain fog has increased and hard to focus. Jaw is quite tight and sore. My mind is wandering and I don’t have a map! Its vacation time... I’ll send post cards!
Last edited on Tue Oct 12th, 2004 06:20 by Big John
____________________
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 Oct 12th, 2004 08:56 |
|
Big John,
Glad to hear things are generally going OK for you.
You mentioned that the opthalmologist might "inject your eyes" this week. You do know that they often use a steroid for this, and that the steroid, eventually, will cause your eyes harm by itself?
If your flare is so bad that you need the steroid, then you will have to have it, but please remember that topical, inhaled, and injected corticosteroids will do as much harm (and sometimes more harm) as prednisone, in the long run.
..Trevor..
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Oct 13th, 2004 02:04 |
|
Hi Trevor,
Thanks for taking time to comment on my post, I know you are quite busy. I am aware of the harm caused by streroids, unfortunately without them I am close to blind. I have weaned myself off of the oral prednisone and tried to do without the eye drops and injections. I was off them for a month while I was in Costa Rica, by the time I returned I was unable to read my monitor or drive. I am wondering if I could speed up the process now that I am on Benicar if I was to introduce antibiotic eye drops. What do you think? Thought I would run that by you, since I understand the eyes have their own systems. Just a thought. Thanks again!
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: Wed Oct 13th, 2004 06:03 |
|
October 12, 2004, Day #20. Day #11 Mino.
Time 0730 BP 158/98. Pulse 78. Back to sleep.
Time 1500 BP 162/96. Pulse 81. Morning was uneventful, hexing that I had last night disappeared today. Energy level was good, morning stiffness was tolerable. Knee and hip pain is about normal. Dreaming continues and has become quite interesting, although I don’t recall everything I know they have to be perpetuated by the Benicar, never have I had this depth of dream. Rather enjoyable actually.
Time 2300 BP 156/96. Pulse 106. Hex of last evening has not returned. Neck stiffness was a bit less today and brain fog had dissipated. Tingling has also abated. Anxiety appeared on several occasions, lasted less than 1/2 hr. ANOTHER GOOD 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 Oct 14th, 2004 05:39 |
|
October 13, 2004, Day #21. Day #12 Mino.
Time 0730 BP 141/92. Pulse 83. Back to sleep.
Time 1500 BP 139/86. Pulse 80. Took 25mg. Mino at noon. Afternoon shows slight increase in muscle tenderness in knees. Tendon pain in right Achilles tendon is moderate. Neck stiffness is bearable. Hip pain is about normal. Not much change this afternoon.
Time 2300 BP 145/88. Pulse 78. Evening came with an increase in chest pressure due to gassy tummy. Took probiotic late as usual, one of these days I will learn to take it before, rather than after the fact.. Noticed increase in brain fog this evening as well as increase in fatigue. Achilles pain has subsided, pain in knees and hips about normal. Itchy feelings all over especially scalp, no real reason. Subside in about 2 hours. Tingling crawly feeling up back into neck & head that I have noticed in the past did not occur this time with Mino. An OK 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 Oct 15th, 2004 05:41 |
|
October 14, 2004, Day #22. Day #13 Mino.
Time 0730 BP 146/88. Pulse 78. Back to sleep.
Time 1500 BP 156/92. Pulse 81. Woke in the middle of the night with some shortness of breath, gassy belly and anxiety. Got up for about an hour while I settled down. May have been hex or might have been dinner. Either way when I awoke I was rested and except for the usual morning stiffness was fine. Energy level today was off a bit, pain about normal. Today was an off Mino day.
Time 2300 BP 152/95. Pulse 76. Evening was uneventful, neck stiffness was evident most of the evening. Probably because I spent quite a bit of time on the puter. Aware of discomfort in my left side just above my rib cage. When I originally got my kidney stone shattered which started this whole ordeal, I remember a distinct pain where I am feeling pain now, however it is no where near as strong. Kinda funny how pains from the past show up on this protocol. Although I am feeling guilty with all the posts I read from people having all kinds of hexs I will have to report ANOTHER GOOD DAY.
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Fri Oct 15th, 2004 06:03 |
|
Hiya John 
You are managing well.. no need to feel guilty! You are doing your share of herxing... 
all those sx are herxing... "shortness of breath, gassy belly and anxiety; neck stiffness; discomfort in my left side just above my rib cage.>> When I originally got my kidney stone shattered >> pains from the past show up on this protocol. "
so it is important to wait till the herxing is fully gone from 1 dose of mino to the next... even if it means waiting longer sometimes.. that will give a better all over experience of the MP.
Good on You John, Best, Barb xx
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
jolbell69
Health Professional
|
Posted: Fri Oct 15th, 2004 11:10 |
|
Dear John,
Glad you seem to be doing so well!!!
I hope you take this in the way it is intended, but I have a little giggle every time I read your posts because you always talk about having a "hex" or "hexing". In old Britain - putting a hex on someone was putting a curse on them. Although I can see the definate comparison that can be made between heRxing and having a curse put on you - I still see the funny side!!
I hope you continue to improve!!
Lovem,
Jo. (UK)
____________________
DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Prozac.Started MP:19may04.
25,D=16.7ng/ml,(Jan05).Benicar,40mg,q6h.Restart 8May09 after 5months break.VitD,25=8ng/ml(May09)
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Sat Oct 16th, 2004 03:40 |
|
Hi Jo UK!
You are the first to comment on that. My relatives came from UK, Cheshire Co, in 1633. He was a Deacon, he was the one who exorcised those "Hexs", sometimes I wish he was here to help with mine ! Keep smiling!
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 Oct 16th, 2004 06:21 |
|
October 15, 2004, Day #23. Day #14 Mino.
Time 0730 BP 125/81. Pulse 78. Back to sleep.
Time 1530 BP 157/96. Pulse 78. Took 37.5mg. Mino at noon. Morning was spent at the eye Dr. pretty tired by afternoon, took a nap for couple hrs. hex symptoms increased, sinus drainage, brain fog, tiredness, tingling up the neck, prickly feeling in scalp. Eyes were very sensitive to light today & pressure in my head and behind my eyes. Daaaah, probably cause they dilated my eyes 
Time 2300 BP 158/97. Pulse 89. Sinus drainage continued. Pressure behind eyes continues, light sensitivity has diminished. Neck pain increase noticed along with brain fog. Joint pain is about normal. So far so good, hex is noticeable but tolerable.
 BUG BUSTIN IS GOIN ON!
Last edited on Sat Oct 16th, 2004 06:24 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: Sun Oct 17th, 2004 05:16 |
|
October 16, 2004, Day #24. Day #15 Mino.
Time 0730 BP 158/97. Pulse 89. Back to sleep.
Time 1500 BP 157/95. Pulse 81. Today was a continuation of yesterday. Hex was quite healthy today, feeling exhausted most of the day. Stiffness in neck increased as well as muscle cramps in AM. Today is a Mino off day. Forgot to take my cream before bed time. Brain fog was quite evident today also. Sure hope I remember what I forget....
Time 2300 BP 144/94. Pulse 91. At the eye Dr. yesterday I was able to talk him out of injecting my eyes. I explained to him I was on a new protocol and told him that I wanted to give it time. He agreed and gave me a month reprieve. Still using the prednisone drops so I don’t know if I’ll clear up or not, but I will try. This evening continues to be a repeat of this afternoon, I notice increased pressure behind my eyes. Flu like symptoms, nasal drainage, dizziness, stiffness, etc. I was rereading Dr. Marshall’s posts and find there are some really cool things about MP.
NO FLU SHOT & GOOD FRIENDS!
Last edited on Sun Oct 17th, 2004 05:18 by Big John
____________________
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: Sun Oct 17th, 2004 23:06 |
|
Hi John,
I had my eyes dilated too, while on the MP and it made them extremely more sensitive. 
I was thinking... this prob increased your 1,25-D, which made your herx (hex  ) feel stronger, although not necessarily so. IMO, I would wait until the herx wanes some, before ramping up, just to be on the safe side. 
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Mon Oct 18th, 2004 05:06 |
|
Hi Reenie !
You are right again! I am staying at 37.5 for a while I am finally getting a pretty good hex... Hope my eyes hang in there!
John
Last edited on Mon Oct 18th, 2004 05:06 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 Oct 18th, 2004 05:09 |
|
October 17, 2004, Day #25. Day #16 Mino.
Time 0730 BP 144/94. Pulse 91. Back to sleep.
Time 1500 BP 158/93. Pulse 98. Took 37.5 mg Mino at noon. Within 2 hours I was hexing. Pressure behind eyes was considerable, brain fog was rolling in, tiredness continues, just a chore to move. Joint pain was widespread and joints were warm. Neck pain was high and neck tingling. My face even hurts. I was perusing posts today and came to the conclusion that although there is discomfort with the hexs (herxs) I am still not enduring any where near the pain or discomfort I was when I first got this disease. I can still get out of bed and ambulate even though it is a chore.
Time 2300 BP 163/99. Pulse 96. This evening was more of the same. I did notice on several occasions mind kinda blanked out. I would be going to do something and forget in the midst what it was I was doing. When I awoke this AM my eyes were blurry, especially my right one. I hope I am making the right decision not getting injections. My hope is by the time I go to the Eye Dr. next month my eyes will clear up some. Meanwhile I am going to cut eye drops to 4 time per day, I already notice that they are starting to become blurry, fortunately I don’t have to work so I can get around. This evenings hex has been tolerable but most evident. For the first time I noticed the warm flushing feeling in m head and over most of my body.
____________________
Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Mon Oct 18th, 2004 05:26 |
|
| Hi John you are doing some good herxing there .. dropping the eyedrops back may be having an effect? if it does become too uncomfortable, you can use the Quercetin; or increase your Benicar to q4h in the short term, & decide if you wish to drop back the dose next time.. Take care Best, 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: Tue Oct 19th, 2004 05:21 |
|
October 18, 2004, Day #26. Day #17 Mino.
Time 0730 BP 156/100. Pulse 78. Back to sleep.
Time 1500 BP 161/90. Pulse 91. Today has been a hex of a day. Awoke as tired as when I went to bed. I think the old immune system was busy last night! Isn’t it great to realize that the our immune system works 24/7. I mean think about it, we sleep and it is still going strong, what a body!
I tell my clients that each of them behaves (reacts) correctly (logically) in every situation. I find the same thing with the body functions, each reaction makes sense even though I may not understand the "whole" process. In other words "trust the process." For instance if John eats a spicy meal with lots of chile then logically he is going to pay the price. Dahhh and what really is entertaining is he does it time after time,, and to think, they actually let me counsel others??
Today has been a rough one. Eyes have been on fire, sinus & eyes have been draining buckets, and I have been burned out all day. My ability to focus is on holiday (vacation). Every muscle and joint is sore, I slept much of the day, and complained the rest of it...
Time 2300 BP 159/100. Pulse 81. Remembering the cartoon about the guy who goes to the doctor complaining about a headache, the doctor has him remove his shoes takes out a hammer and hits his big toe. The guy is no longer focusing on his head ache. That’s where I am today!
I know my neck & shoulders are stiff, however the rest of my muscles are so sore that I really can’t discern what hurts, guess I am on pain overload, the old brain just doesn’t know which to pay attention to. I wonder if the pain in the muscles is a response to an overload of toxins in the body? Just a thought. Eyes are a bit blurry, however eye drops are down to 3 times a day. This evening has been more of the same, however quieting down by 2300. All in all a most unusual 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: Tue Oct 19th, 2004 21:39 |
|
John,
It sounds like you're having a strong herx, day after mino.
The increase in pain could be due to a rise in D, either due to herxing or from too much light. Although both cause a rise in D and can feel the same, they are different. You can, in fact, experience both of these, if you get too much sun and are herxing at the same time.
Are you diligently cave dwelling?
|
Big John
Guests visiting Phase 1/2/3
|
Posted: Wed Oct 20th, 2004 01:32 |
|
Hi Reenie!
Yes dear heart I am playing troll man. I wait till it is dark to leave my cave and feed on chubby little children. I specifically enjoy the stares and laughs I get wearing my fashionable googles as I chase the children down the street. (in my little 3 wheeled scooter.) Next month I'm gonna trade my scooter for a Harley. Will you love me then?
____________________
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 Oct 20th, 2004 04:19 |
|
John, LOL!
So it appears we have bears hibernating, Vampirella Reenie cave dwelling, bats in bat caves, ppl on the "mushroom protocol," and now... troll men chasing children... and all in time for Halloween!
We sure do have a creative bunch here, now, don't we... how do "they" say... "misery loves company" (referring to herx here)
When you get your Harley, maybe I'll be feeling well enough to ride mine again by then, too... itd, (in the dark) of course.
|
Current time is 07:01 | Page:   1 2 3 4 5 6 7 ...   |
|
|
|
|
