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Jeannine R.N.
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Posted: Sat Aug 12th, 2006 08:12 |
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Benicar 40mg q 6hrs. Mino 25mg q OD since Aug 1st 2006.
In my cave, noirs on, no D diet
I have some herxing...fatigue, muscle spasms, symptoms mild and waiting until Sunday two week to ramp to 50mg of mino.
Sleep cycle is now sleeping during the day and up at night. This flipped on its own. I have always felt better at night...I have often wonder why. I think the sun has to do with it but felt this way and have been in a cave for over three months.
I did feel in Super Wal-Mart tonight and sitting outside last night with light on porch no glasses and a late taken benicar that I got woozy and weak.
All tolerable.
One question.....Do I have to be concerned ever about my 25D getting to low. I havent seen anything on the site but I am sure that it is there...Please advise where to read about this.
Thanks, Jeannine Last edited on Sat Aug 12th, 2006 08:13 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aussie Barb
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Posted: Sat Aug 12th, 2006 09:49 |
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Jeannine
Welcome to Benicar and Mino Forum.. Thank you for posting..
see the FAQs What times should I take my Benicar? What if I forget a dose? this has some helpful hints.. and you may find it best to keep glasses on at this early stage.. many have reported increased wooziness from lifting the glasses to check a label eg.. The other thing to watch in malls and shopping centres is that some have skylights with Natural Light coming in..
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
Can my Vitamin 25-D go too low?
How often should I test D levels? What are the target numbers?
see the Information in these Links and the links within:
Vitamin D Tutorial Calciferol and Calcitriol
anytime you are looking for Information, you can click on the ABC in my signature and you will be linked to all the Information under alphabetised headings.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Jeannine R.N.
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Posted: Thu Aug 31st, 2006 10:28 |
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Hi AB and Staff,
I took my first dose of 75mg of mino last night. I noticed my skin is itchy this AM and dry...so the skin thing is a herx..which is good. All is tolerable so far.
I do have a concern and just want to make sure I am on the right track.
1. I am not as sun sensitive. I can go out for hours without gloves and K creme.I am not trying to make a habit of this...is this normal for some??
2. Also, I am wearing my glasses but I tend to forget to put them on lately because they seem dark and I forget to put them on....but remember and make myself wear them...also not making a habit of this....but find all this strange...
Are any of these mean I am not doing something right? Does this happen to others???
Thanks so much for your help!
Hugs, Jeannine
We may endure for a night but joy comes in the morning.....
____________________
CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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TrishOBrien
Member in Phase 3
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Posted: Thu Aug 31st, 2006 10:57 |
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Hi, Jeannine,
I have the same luck that I don't seem to have sensitivity with my skin. I have noticed neurological symptoms from light in my eyes though. I think everyone is individual and it depends on where the bacteria has set up shop. Also seems to depend on who long or how sick a person is.
Good luck to you!
Trish
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CFS arthralgia migraines RLS chills mouth sores swollen glands paresthesia 125D68 ibuprofen Vicodin Ph1May06 NoIRs lite exp r/t commute low lux home 25D <7
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Jeannine R.N.
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Posted: Thu Aug 31st, 2006 11:00 |
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Thanks Trish for your reply! I was hoping I am not the only that experiences this. I will probably also get my 25D test again soon just to make sure.
Thanks again, Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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jrfoutin
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Posted: Thu Aug 31st, 2006 16:50 |
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Jeannine,
Your D tests show 2/21/06 125D(49)25D(11). You started with a low 25-D in February of this year and I see you are noting Herx events. It is likely a good time to get the 25-D tested again to make sure you are keeping within therapeutic ranges.
You report goin out for hours without gloves and Kcream, but I didn't see if you were wearing layers and long sleeves. Recent documentation from ARF suggests some will be more sun tolerant than others. However, your Morgellans and reporting skin Herxing today might suggest a cautious approach to light and/or heat.
If you are forgetting your sunglasses when you go out, you might want to keep an extra pair of backup in a purse or your car. Even if you have no eye sensitivity now, you can always skip the wrinkles under your eyes when you get to be old (smile). Keeping your Amygdala protected in the brightest outdoor lighting makes sense right now too, even if your eyes don't give you a problem, you have reported Depression.
You are in Phase 1, which is early days when you get a handle on your own Herxing patterns with regard to incremental increases of medications. Moderators and your Health Care Provider are also best assisted with good feedback from this period of time, too. If it is possible, this is a good time to rule out any sun flare as you learn about your Herxing and response to Herxing.
You might want to post more often than once every couple of weeks too. Posting here will be a great resource for you when you look back on your progress over time, and it will help moderators get a sense of the flux and flow of your Herxing to better respond to your questions as they come up.
Glad you are here! I look forward to seeing more of your posts--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
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Jeannine R.N.
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Posted: Fri Sep 1st, 2006 02:10 |
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Hi Janet,
Thanks for the advice. I am wearing long sleaves when going out. However, I stopped wearing my gloves and K creme because I have no obvious sunflare.
After taking my 75 mg of mino last night I did have itching and burning of the skin today so I am going to count that in as a herx. I also was more tired today...though nothing really bad...still able to get out...I have met a friend whom I am hanging out with a lot to pass the MP time....so I will try to post more....though having a great time staying away from the computer as now I dont have to look for my cure anymore!!! I still wonder why I am not sensitive like I was to light/sun.....do we know the science behind it yet?
As far as my depression it last only briefly (wow am I glad to say that siince coming from being suicidal only months ago with major anxiety) and I believe is herx related because it feels chemical. I am aware that light to the eyes can cause this. Oh, I have experienced some hypomania which it has been comtempated in the recent past if I might be bipolar....but it also could be to that I restarted prozac recently....I have noted that on the benicar and mino that I can tolerate prozac now...in the past I would get narcoleptic symptoms from it...and had to take provigil which I am no longer taking. I can also now take ambien without getting rebound depression the next day....I found this to be interesting...I only take the ambien seldom occasion.
I have noted more pleasant moods too and more motivation and I have run a temp of 100 on some days and below normal in between. I have also noted that the night after I take my mino that I have nightsweats.
I will have my 25D tested this coming week at quest.
Thanks again for your help. I will let you all know my lab as soon as I get it.
Take care, Jeannine
We may endure for the night but joy comes in the morning.....
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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tom
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Posted: Fri Sep 1st, 2006 06:16 |
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Jeannine,
Congratulations. Glad to know that you started earlier than anticipated. I look forward to your future posts.
To your health,
Tom 
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Jeannine R.N.
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Posted: Sat Sep 9th, 2006 04:44 |
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75mg mino and Benicar 40mg q six hours
Thanks Tom for the encouragement. It is great to know that you are reading my post!
I am now getting concerned. My light sensitivity is almost nil...light or skin..though I am covering up as directed and wearing glasses when I remember...I will almost forget to wear my glasses as they seem to dark to see. However it did seem that I did get some herx..fatigue increased with the 75mg of mino...
I will get my 25D tested within the next week...
Anyone have any input???
I will start posting more but not much to report. The only symptoms I am having are fatigue but am still able to carry out sanding and prep for painting a room...My mood could be better but I think correlates to my fatigue. I do know that this could be that I am not wearing my glasses when I forget them.
I thank you all for your time! Has this happen to other MPers only to change latter on as they progress on the MP?
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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jrfoutin
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Posted: Sat Sep 9th, 2006 17:40 |
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Jeannine,
Ummm... D is palliative. Watch out for that one. Hope you are not finding a lot of reasons to head out and about.
"Eye" light sensitivity or not, your Amygdala can be getting a straight shot of trouble when you forget to wear your eye protection. Fatigue, mood, and depression are indicators. They can be Herxes independent of light but related more to time and level of dosing... or a little of both. But it is hard to tell from posts that only occur once a week with a very general discussion that masks dose in relationship to day of light exposure, and timing and duration of Herx.
Your own insight:
I do know that this could be that I am not wearing my glasses when I forget them.
Herxing, especially neuro symptoms like you are noting, can keep you from seeing yourself clearly. These are difficult to quantify and associate, further adding to the challenge. Charting daily, and posting daily or every other day, may help you more and could lead to an entirely different set of conclusions about just what is Herxing and what may be attributed to other factors.
Phase 1 is the best time to learn about your Herxes, helps for communicating better with your doctor, dosing strategies that work for you, and how to help your immune system do the job it must do. The medications must work with your immune system and require effort within lifestyle conditions you must control. Successful outcomes are always expected, but some have had to revise their strategies in order to succeed.
Keep on working it (and I hope your room and painting looks great!)--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
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tom
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Posted: Mon Sep 11th, 2006 01:48 |
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Jeannine,
I would theorize that it all depends on ones susceptibility or sensitivity to different areas of the protocol. Suffice it to say that ones compliance, especially as it relates to eye protection is critical. The only time I am not wearing glasses is when I am home under lighting that I know meets lux requirements for the MP. Also, check your diet. Although some have expressed flexibility in the moderate consumption of certain food products I found that I was not one of them, at least not now. For example; I started to introduce some dairy products only to find that I stopped herxing altogether. This resumed shortly after its elimination.
Lastly you are right about your D levels. This should give you a good indication of where you are. I noticed a sharp and definitive increase in herx when my D,25 dropped below 15, Just as Trevor and the Moderators had warned. I certainly would not be too concerned. Press in, be as compliant as possible and I think you should see more definitive indications in short order
The best to your health,
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Jeannine R.N.
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Posted: Mon Sep 11th, 2006 23:06 |
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75mg mino every other day, beni 40mg every six hours
Hi Tom and Janet,
Thanks for the replies.
I am going to post more often! I also am going to get my lab done this week. Thanks for your help!
I am noticing fatigue, skin burning, bruising easily and mood swings...like wired but tired.
Hugs, Jeannine
Also have notice some low grade fevers of 99 to 100. They come and go.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Reenie
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Posted: Wed Sep 13th, 2006 04:34 |
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Hi Jeannine,
Glad to see you finally got started! 
You might try being a little more diligent about your glasses and gloves to see if you feel any better. Remember, light exposure AND herx can feel the same. Both together make one feel worse.
Why is my 'herx' more intense after exposure to Light &/or Vitamin D?
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Jeannine R.N.
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Posted: Wed Sep 13th, 2006 23:49 |
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75mg mino every other day, 40mg of Benicar every six hours
Thanks Reenie...best to do things right...I am covering up and wearing glasses.
I do notice that my skin burns more the day after my mino and that I am more tired and brain fatigue. Still brusing easily. I remember Jsandman001 saying he saw lots of lysised RBCs under his scope while on mino only ...Interesting!
I got my 25D retested....so will update when I get the results back.
We may endure for a night but joy comes in the morning,
JeannineLast edited on Wed Sep 13th, 2006 23:50 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Sat Sep 16th, 2006 00:59 |
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75mg mino every other day, 40mg benicar every 6hrs
Noting bruising...Mom even noticed it...on arms and legs in places where I don't usually bruise...so this it not only my observation...
- FATIGUE/SLEEP I was sleepy today ...so I rested. Even sleepy after drinking decaf coffee... Still having fatigue about a 6 or 7 (10 being the worst)
- SKIN Crawlies today....burning skin increased after taking mino.... small acne on chest ...increased noted
- Mood Irritable ....blah.... not depressed but not at ease....friend says I have frequent mood swings...duh lol lol....you would to if you were always tired....
All Tolerable....
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Sun Sep 17th, 2006 19:27 |
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75mg of mino every other day; Benicar 40 mg every six hours.
I have noted something really interesting. My left knee that has given me stiffness and pain for a long while has resolved. I will continue to monitor this but it is gone. AMAZING....
- FATIGUE/SLEEP Took a four hour nap ..was tired but not so much fatigue as in the past weeks. I think my herxing with the 75mg is minimal.
- MOOD is more warm and fuzzy not so irritable as in the past weeks over the last two days. Moods not swinging as much.
- SKIN still rash on chest (small acne), some on chin, new bruise on left underarm. My eye and skin reaction are still low. Muscle spasms (two). Crawlies in the eve; some during the day, burning skin and some itching, This has been horrible in the past, so what I have now is tolerable thank GOD!
Still waiting on my 25D lab from Quest.
JeannineLast edited on Sun Sep 17th, 2006 19:30 by Jeannine R.N.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Jeannine R.N.
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Posted: Mon Sep 18th, 2006 19:39 |
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75mg every other day (will take dose tonight); Benicar 40 mg every six hours
GREAT NEWS!!!!!!!! My 25D-D3 is still 11 ng/ml
So I guess that means I am ok in that department?
I can tell that I was herxing but am ready to move to the next dose as I am not as tired for a couple of days now. No crawlies today and more energy. Weird dreams last night and restless sleep. Mood good except for the feeling of being really lazy (relaxed). Did wake up dragging but improved through out the day. Right leg still a little stiff but much improved.
So tonight on to 100 mg of mino q other day...
So does that mean it is time to move to phase ll boy I have a lot of reading to do!?
How do I know if I should do phase ll or modified phase ll?
Please send all info that I need to read.
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Aussie Barb
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Posted: Mon Sep 18th, 2006 19:47 |
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Jeannine
Thank you for posting.. You have done well with your 25D.. near or below the therapeutic level of 12ng/ml is the target. There is no need to retest the more expensive 1,25-D..
see this FAQ Where can I find phase two and three? for information. Please send for the Questionnaire to fill and return, and you will be given feedback on your situation.
You can read the detailed Information Posts at the top of the Phase 2/3/ forum. We then encourage you to begin a new progress report in the Phase 2 forum to discuss recommendations re the new meds and dosing in preparation for your Dr visit for scripts etc. Thank you. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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tom
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Posted: Sat Sep 23rd, 2006 01:21 |
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Jeannine,
Congratulations on the move. You will discover a lot of strange symptoms especially in the first few months.
P.S. Great D level!
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Jeannine R.N.
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Posted: Thu Sep 28th, 2006 01:12 |
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100mg of mino every other day (second week) ; Benicar 40 mg every six hours.
Well back in herx land....A little more sensitive to light...This past weekend had a reaction of irritability and almost panic at starbucks after going to indoor flea market.....From not wearing glasses like I should have...to many pretties to look at and seemed to dim with 10% NOIRs. I need to look into maybe a lighter pair of NOIRs ANY RECOMMENDATIONS?
- FATIGUE/SLEEP Sleeping well but all I want to do is sleep. I slept all night then most of the afternoon. Sleeping more...Feel out of it...like my brain is on vacation ...this has been going on since Monday...took mino Sunday. Woke up monday and tuesday felt like Mack Truck came in my sleep was gone this AM but still want to sleep sleep sleep and little motivation
- MOOD not so irritable more like I took Valium but did not...Brain sleepy spacey. Monday and Tuesday...had a bit of low grade depression..no suicidal thoughts just blah. Feel better today.
- SKIN still rash on chest (small acne), some on chin...No bruising and old ones have healed.. Muscle spasms (4). Crawlies in the eve (was bad monday and tuesday; some during the day, burning skin and some itching ...decreased since monday.. Nose sore comes and goes...gone right now..no smell noted of late...never showed signs of infection...Small sore like papercut...
- PAIN Let me add my long not so lost friend...pain...Leg L in stiff pain with moving...body aches all over (3-4) arms,back,neck....
- EXTRA Some sinus pressure..eye sore, itchy a little the past two nights, Little bit of headach...flu like feeling since monday....has decreased each day since monday. Just glad depression is at bay ...didnt want to start on that road..also am blessed that I can sleep.....More lighthead when standing like when first starting MP.
HI TO ALL MY MP FRIENDS...SORRY NO TALKIE TALK>>>been SLEEPY SLEEPING..Will call soon...HUGS Jeannine
Will stay at 100mg mino until herx is minimal.... Will fill out questionnaire soon.
Jeannine
____________________
CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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