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DianeC
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Posted: Fri Mar 31st, 2006 09:39 |
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Thanks Barb !
I appreciate it! I guess time will tell. If there is bug killing going on in that area it should end at some point and start in another area, I would think. Thanks again! DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Thu Apr 6th, 2006 08:18 |
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Day 86 Benicar 40mg q6h Minocycline 50mg q72h
Somewhere along the way I must have really miscalculated the days on Benicar as I checked the calendar and from Jan 10th until now is actually 86 days
The insomnia is still with me or should I say that my days and nights have switched around pretty much completely now.
I am sleeping very soundly though and wake around 3PM or 4PM just in time to do the mail and try to do anything important before businesses close for the day
I am still herxing mostly on the same side and on that same side toward the back. I usually take the mino in the early evening between 7PM-8PM and start herxing for the first time about 32 hours later in the middle of the night but it only lasts for 20 minutes to half an hour. The herxing seems to be happening more so in the middle of the night now.
Occasionally I will get one of those awful foot cramps but they are not as bad.
Therefore I feel that I am ready to progress to 75mg minocycline q72h and will start that tomorrow night
I am very happy to say that the I have received both pair of NOIRS wraparound #35 glasses!! Thank you Alayne and Sun for your posts and information! They are very comfortable and so stylish! They fit beautifully and I think that the rubberized material they use allow them to stretch a little if need be
The darker 2% seem just a tad lighter than the fit overs which is actually pretty cool as I can wear them walking around the house whereas I was much more afraid of stumbling with the fit overs
I am very thankful for this site and wishing all of you gentle and happy herxing
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Thu Apr 6th, 2006 12:51 |
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Well, now I am not able to sleep at all I went to bed around 5:30 AM and just laid there until 8AM and decided to get up and have some breakfast for a change
The weird thing is that I don't feel tired at all. It would be great if I could get back on a regular sleep schedule but I don't see that happening for a while yet
I forgot to mention that my lower back has been itchy for quite a few days now (almost like a dry skin itch but still itches after I put cream on it It is hard to see back there but will have to determine if anything is going on.
I had been bloated so much of the time for the past few weeks and now that is gone so I know that my body has rid itself of alot of toxins I had been afraid to get on the scale for I was sure I had gained weight but if I did it is all back to my normal weight now
As I had stated in my previous message I will be starting the 75mg mino this evening and looking forward to more herxing
Best wishes to all of you as always
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Sat Apr 8th, 2006 09:41 |
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Day 88 Benicar 40mg q6h Minocycline 50mg q72h
Well I think I spoke too soon as the herxing that I was experiencing on my left side has now traveled more to the back on the left side above the waist. And again it started 32 hours after the mino dose.
It felt like sharp poking jabs. I am happy that it appears to be traveling around my body in a circular fashion and not just staying in the one area as it had been.
So consequently I not sure but it may be too soon to progess to the 75mg mino.
I think that the itching may be due to the hot showers I have been taking lately. The hot showers feel great and I thought it would enable more mino penetration but I think I have been drying my skin out too much.
I will see how it goes in the next few days and then decide if I am ready for the 75mg mino
Best to all!
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Sun Apr 9th, 2006 08:12 |
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Day 89 Benicar 40mg q6h Minocycline 50mg q72h
I did not have the same herxing (pain on side and back) that I have been having around this time of morning (usually a little earlier than this) so I am convinced that there was bug killing going on
Have been sleeping an awful lot from around 6AM until 3PM or 4PM the next day. Also noticed little popping sounds coming from my right ear.
I am going to wait until next weekend to start on the 75mg mino q72h as I feel that I am close to killing as many bugs as I can at this dose and will be ready to advance
Best wishes to all for gentle herxing
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Tue Apr 11th, 2006 08:58 |
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Day 91 Benicar q6h Minocycline 50mg q72h
Today is pretty much the same as the last couple of days with less herxing now on the left side and back area above the waist so I am convinced that there was bug killing going on
Sleep patterns are still the same; up all night and sleep most of the day And a few times I have gone to bed at 6AM only to lay there and get back up at 8AM for a couple of hours; then return to bed and then my whole day is gone
Once I do get to sleep, it is a very sound sleep so I think that is the way my body is dealing with this at this time.
What still really amazes me is the fact that the last 2 summers I spent in Physical Therapy; limping and in such pain when walking from hip bone spurs and then being told I would need a hip replacement in 2 years and then I compare that to my condition now! I really had feared that we would have to move from our home as we have 2 flights of stairs but now the future is looking very bright
Still planning on advancing to the mino 75mg this weekend
Best wishes to everyone!
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Sun Apr 16th, 2006 07:53 |
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Day 96 Benicar 40mg q6h Minocycline 75mg q72h
Well I believe that I have done all the herxing I am going to at 50mg so I am happy to say that I have just ramped up to 75mg Minocycline!
Last night was the first that I had been out; we had a family birthday dinner at a restaurant. It was still light out as we left around 5:30 and I started to feel the start of some neurological effects from the light but I was only exposed for a short time so all was welland I started to feel better as the night progressed!
I even had my K-Cream on and of course my wraparound Noirs
I just updated my signature line
I do have one question?? I may be getting too much artificial light and that may be why I am not herxing as much as I should?? I am on the computer alot and had turned the brightness down some time ago but it seems bright again.
I tried wearing the 2% Noirs at the computer but then I can't see the keyboard when I type and I make too many typos. Any suggestions of how I can have light down near the keyboard?? Thanks bunches!
Happy wishes to all!
DianeC
Last edited on Sun Apr 16th, 2006 08:09 by DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aussie Barb
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Posted: Sun Apr 16th, 2006 10:03 |
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Diane
Q: I tried wearing the 2% Noirs at the computer but then I can't see the keyboard when I type and I make too many typos. Any suggestions of how I can have light down near the keyboard??
- see If you can't see your keyboard
and also:
-turn your computer brightness and contrast down
-wear the NoIR glasses that allow you to see enough without your eyes hurting.? 10%.. 40%..
-have a low wattage bulb lamp behind your line of vision.
-dimmer switch the light in the room.
Others may have more suggestions.
all 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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DianeC
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Posted: Tue Apr 18th, 2006 06:23 |
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Day 98 Benicar 40mg q6h Minocycline 75mg q72h
Thanks Barb for the link on the computer lighting!
Started the 75mg mino on 4/15 Yesterday I had an incredibly painful left ankle/foot cramp which propelled me from the bed.
When I get these cramps I usually grab the heating pad and put it on high and wrap it around my foot (as my foot is usually ice cold) The pain goes away so much quicker that way
My question is: Is it more effective if I endure the pain and am I hindering the progress by using the heating pad as I am lessoning the pain caused by the herx
Yesterday I also had some left hip pain which is gone today and earlier today I had some stomach herxing with a light amount of bloating which included the left side but it did not last long
So tomorrow I will be taking my second dose of 75mg mino
Best wishes and hope all of you had a nice Easter
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Aussie Barb
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Posted: Tue Apr 18th, 2006 07:33 |
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Thanks Diane
please do always relieve your pain and any intolerable symptoms, making the MP sustainable for you. tolerable is the aim.
all 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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DianeC
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Posted: Tue Apr 18th, 2006 07:47 |
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Thanks again Barb!
Well I can hardly believe it but I am ready to go to bed 2 hours earlier than usual!!
Thanks again for everything
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Julia
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Posted: Tue Apr 18th, 2006 08:58 |
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Diane,
In addition to what Barb said about making the MP sustainable by controlling the pain: as I understand it, the herx is caused by the toxins released on bacterial die-off, so when the pain comes, that batch of bugs is already dead . So by alleviating the pain, you're not preventing bug-killing - hope this is a comfort!
Julia 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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DianeC
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Posted: Wed Apr 19th, 2006 00:12 |
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Hello Julia,
Thank you for that extra piece of information and yes it is reassuring to know that I am not hindering the bug killing process
I see in your signature line that you were also affected by uveitis and that you are now in phase 3.......wonderful for you!!! I can't wait to get there as well but am taking things nice and slow for now. Does the uveitis bother you at all anymore?
Take care, Julia, and best wishes to you!
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Wed Apr 19th, 2006 06:11 |
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Day 99 Benicar 40mg q6h Minocycline 75mg q72h
Well I did get to bed 2 hours earlier last night and woke 2 hour earlier todayNot very hungry so ate a light dinner and took a nap on the couch.
I was icey cold and had a ton of covers on me but just could not get warmA very strange thing happened and it has to do with a dream
In the dream I just remember walking into this large house and the the steps on the stairs were very steep and I was very cautious walking down the steps.
Toward the end of the dream (at least this was right before I woke up) I was walking down the hallway toward the door and almost ran someone over as I had a terrible cramp in my right foot (the 2 outer toes to be more specific)
At that point I woke up to a very severe cramp in the 2 outer toes of my right foot! What I am wondering is:
1) Was my brain trying to tell me during the dream that a cramp was about to start thus interrupting the dream or did my dream trigger the cramp? or
2) Was the cramp there first before I dreamed it but because I was in such a deep sleep did not feel the pain until the pain signal went to my brain during the dream thus waking me up?
Ultimately what I am wondering is if we are in a deep sleep can pain go undetected even though the brain has acknowledged it or does the pain center of the brain shut down during deep sleep?
It is almost like which came first.....the chicken or the egg??
Does anyone have any thoughts on this? I just find it interesting
Best wishes to everyone!
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Julia
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Posted: Wed Apr 19th, 2006 08:36 |
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Diane
Yes, I had bad uveitis, through which my sarc diagnosis came. My eye guy, after months of puzzled investigations and courses of steroid drops, suddenly had a brainwave and sent me for blood tests and X-rays for sarc. "Good news," he said smiling when the results came back positive, "you've got sarcoidosis." (I think what he meant was "good news, I've solved the puzzle, now I can get rid of you as that's not my department.")
Phase 1 cleared the uveitis dramatically. I don't have a problem with it now, though I have a couple of floaters left to remind me to be thankful. Are you seeing any improvement yet?
Julia
"There IS light at the end of the tunnel - quick, get your NoIRs!"
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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jrfoutin
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Posted: Wed Apr 19th, 2006 13:02 |
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"Ultimately what I am wondering is if we are in a deep sleep can pain go undetected even though the brain has acknowledged it or does the pain center of the brain shut down during deep sleep?"
Once in a while I wake up with similar events as you listed in your post, even when careful about sleep. Have a hard time saying much about the other pain events while sleeping because I slept through them (smile).
Early in the MP I decided to use "sleep" to help & to mediate peak herxing. Actually, someone had posted something about wanting just have an induced coma to get through herxing and that made me think about sleep. I also thought anyone familiar with surgery knows anesthesia is used to induce sleep so pain is only an issue --after-- surgery. Daily pulsed sleep events are so much a part of our existence we often don't think about how our bodies recover and heal during that time (MP or not), but if the MP trick is to kick start and assist the immune system, why not use sleep to help too?
Now, one of my favorite and most dependable toolkit options is just take a nap if the herxing seems a bit much... and it usually does the trick. Also, I purposely do an uninterrupted 8h block of sleep at night and MP dosing fits that. I don't do sleep medications intentionally (that also leaves me with no experience with them so I can't say if they would help anyone else or not). Human error occasional deviation -- staying up late for occasional good or bad reasons -- produces more pronounced pain and less tolerance for herx, so that confirms my 8h choice. I sense my immune system responds well to a regular 8h sleep choice.
That's the anecdotal answer from my end of the universe.
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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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DianeC
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Posted: Thu Apr 20th, 2006 09:57 |
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Hi Julia,
That is great news that your uveitis had cleared up in phase 1 That is interesting regarding the doctor ordering the test for sarcoidosis but it is good that he did despite his arrogance as at least you knew what you were dealing with. I don't believe I was ever tested for sarcoidosis
I was diagnosed with uveitis is 1998 and for 3 years thought I was seeing the best doctor in the world but my condition worsened dramatically and my health continued to spiral downward as a result of all the numerous immunosuppressant drugs.
My uveitis did clear after I was treated with doxy (my previous Doctor Wirostko had actually photographed the mycoplasma...mollicutes) so at that point I knew it was of a bacterial nature but it wasn't enough to deal with all of the other health issues that I was dealing with ......there was something missing and that was when I realized that MP was the answer to achieve total wellness
Because of my extreme photosensitivity I had cancelled my routine ophthalmologist visit as I don't know how I will react to the light during the examination
One weird thing has been happening in the last few weeks.....I don't know if it is anything or not but frequently when I close my eyes to go to sleep I will see light and what appears to be the a large black wing of a bird fly by the outer corner of my eye.....on a diagonal from the outer corner toward the top of my head (I think it has happened to both eyes but I will have to pay closer attention next time....it just happens so quickly. Is this weird or what????
Well, Julia, you are really at a good place......Phase 3.....I am really happy for you I can't wait til I get there!!
Yes! I can relate to light at the end of the tunnel!! I never take my NOIRS off!!
Best wishes to you
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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DianeC
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Posted: Thu Apr 20th, 2006 10:30 |
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Hi Janet,
Thank you for your thoughtful reply to this interesting topic.......sleep
Yes, I agree with you that there is certainly alot to be said for sleep and the healing that it provides Before MP I was not sleeping well at all and certainly not soundly
My problem is that I cannot sleep at will whether herxing or not. My herxing timetable has changed as my dosing has changed so I cannot predict when I will be herxing or in what form as yet.
Currently I am sleeping many hours....probably between 10 and 12 hours a day including the after dinner nap
I do think that the more we sleep, the more we benefit.... especially considering the neurological herxing (headaches, etc) I do not like this type of herxing (I experienced it when I first started the Benicar and was riding in a car with the intense winter sun glaring in the windows. I felt the effects in spite of being totally covered It also made me feel very nauseous
Well speaking of sleep...my body is now telling me that I had better get some
Thanks again for your insight.........
DianeC
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chronic fatigue/osteoporosis osteoarthritis, 9/05 25-D 40 1,25-D 52 1/06 Benicar 40mg Q6H Mino 28Jan @25mg q48h Mino 12Mar @50mg q72h Mino 15April @75mg q72h Mino 1May 100mg 5/06 Phase 2 D-25 18 10/06 Phase3 D-25 20 5/07 D-25 under 7
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Julia
Member in Phase 3
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Posted: Thu Apr 20th, 2006 11:39 |
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Diane,
The ripples of light round the edges of the field of vision were common when I had uveitis, and now come back a bit as harmless herx. It probably doesn't mean there are still bugs in the eyes, just in the brain! Things are being wrongly perceived by the 'sight' bit of the brain as stimulation from the eye.
Nevertheless, I think you should keep up to date with eye tests, because you just don't want to take any risks with eyes, they're too precious. I've just had mine and was told the short-sightedness in both eyes had improved slightly, in the poorer eye quite a bit, which I didn't really expect at my age!
How interesting that doxy cleared your uveitis and mino cleared mine. Yet antibiotics aren't thought of as standard treatment for it - just steroid drops, which only give very temporary relief. When I expressed concern that yet another course of drops might give me cataracts, my consultant's reaction was a shrug, "Well, we can easily take them out then." What a mercy that I found the MP just as my opthalmologist warned me that cataracts were starting to form! I've had no bother with them since.
Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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katydid
Guests visiting Phase 1/2/3
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Posted: Thu Apr 20th, 2006 20:34 |
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I also get the "birds" flying by when I close my eyes. I just started noticing it. I'm so glad you two posted on this. I wasn't sure what it was!
Glad you're making progress so quickly!
Kathy
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CFS.D's 12/05 25D-7, 1,25D-19,not Quest.Vicodin 10-325 1 PRN.Flexeril 10 mg qday.Westhroid 60 mg.12/27/05 Avoid sun,D Noir's.
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