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Aunt Diana
Member Advocate
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Posted: Tue Dec 13th, 2005 11:21 |
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My first dose (25mg) was on Sunday eve. Monday eve, like clockwork, I got hit with a terrible herx....it was stronger than I expected it would be and had me pretty miserable for several hours.
Symptoms: Severe headache, back of neck, upper shoulders....then it worked it's way to my entire body.....pounding, pounding...I felt like I had the "bends". Nothing seemed to "touch" it,for an hour or two. Then, it gradually subsided. I also seem to get very cold....the only thing that warms me up is a strong fire or soaking in hot water.
Also had strong emotional and fearful response, very teary. Figured the only thing to do was to try to sleep it off....which definitely helped.
My eyes are sticky and burning today. My upper back is tight and sore, plan to stay in bed most of today, I feel pretty exhausted but I'm glad the pain has lifted.
I figure I need to experience a few of these cycles before I understand how "intolerable" they are. At least I have not had cardiac herx. In my past experience with other antibiotics, the herxes didn't seem so extreme, but they lasted for days and were pretty miserable in their own right. Also, I may be forgetting just how bad they were come to think of it.
Thanks for all the support you've provided....it makes it a lot easier when you've got an idea of what to expect.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
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Posted: Tue Dec 13th, 2005 15:22 |
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Diana
Welcome to the Full Protocol Forum.. when you get hit by a hard herx like that, varying your Benicar dose will often help you thru it if need be.. Do not hesitate to use any of the meds adjustments options in My Herxheimer reaction is too strong. What should I do? If you are concerned do not hesitate to contact your Dr..
you are right that experiencing the herxing and adjusting the meds to explore cause and effect is all good experience... The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. 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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Aunt Diana
Member Advocate
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Posted: Thu Dec 15th, 2005 00:27 |
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Hi Aussie Barb & thanks for your reply. I have been pretty much "down for the count" for the last two days, so I haven't been on the computer much and didn't have the energy to post.
I slept a lot yesterday...got up around 3p.m. but wasn't good for much. Very lethargic, a bit teary, but as the day progressed I felt better. Went back to bed @ 7 slept a few hours and woke up in pain. All muscles and joints aching, my head throbbing felt very cold
I sat in front of a fire (thank God for my husband....I would not want to have to go through this alone) for a few hours and watched some brainless TV. By the time I went to bed the pain had subsided This is much more intense than I thought it would be.....I don't know what made me think it would be easy... I guess my theory that I've killed a lot of the bacteria over the past years because of all the antibiotics I've taken just doesn't fly.
This morning when I woke up was totally confused about my benicar dosing. I couldn't remember if had woken at 4 or not, so I took one immediately and started feeling better. (I have a pill box with all the times and dates...but even that was confusing) Maybe I'm starting to get the hang of it.
Now I;m wondering what I should do because I have an important appt. on Friday @3. I guess it's too soon to know how to manage that. Any ideas?
Again thank you for your support.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Dec 15th, 2005 00:39 |
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Diana
Thank you for posting.. is good you have the pill container.. and that the Benicar could help you..
please understand that the aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
Do not hesitate to use any of the meds adjustments options in My Herxheimer reaction is too strong. What should I do? .If you are concerned do not hesitate to contact your Dr..
see also PAIN CONTROL
when you have an appointment. Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal..
see also some important tips in Going to an Appointment.
If necessary, you may also wish to take more frequent mino just for that short while to dampen the herx for your comfort and convenience.. some may be able to stop the antibiotics to have a break from herx but, from your description it doesnt sound like you are one who can..
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Fri Dec 16th, 2005 21:36 |
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I took my 3rd dosage of mino (25mg) yesterday and am feeling pretty good today...no herxing to speak of, although my back itches like crazy and feels inflamed....I don't know if that's a herx. My head is clear and I've taken advantage of the cloudy rainy day by getting out of the house...hooray...it felt great. (I covered up and wore my noirs, but just getting out in the fresh air and interacting with some people was wonderful)
My first dose of mino had me herxing immediately. Maybe there is a herx waiting to hit? If so I'm prepared with my benicar and addition mino if needed.
If I continue to feel this well I'd like to ramp up to 50mg on Wed 21st....with Christmas coming do you think this is okay or should I wait til after the holiday? I'll be having my family for Christmas dinner at my house.
Thank you in advance for any advice. javascript:emoticon(' ',%20'images/emoticons/smile.gif')
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
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Posted: Fri Dec 16th, 2005 22:14 |
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Thanks Diana
re "Last night I thought I would scream, my back itched so much. also my ribcage. I keep asking my husband to put cream on and if it looks like the skin is inflamed....he asssures me it is not inflamed. It feels from the inside like it would be millions of little red bumps. I even think I can feel the roughness with my fingers...but it's not there for anyone else to see. It is maddening but I guess it's a herx symptom."
it doesnt sound like it is time to increase mino yet.. there is no way of hurrying the MP without running into trouble.. see the FAQ I'm eager to get well. How can I speed up my progress on the MP?
and I've developed a rash. What should I do? for helpful tips (even though the rash is invisible, the tips all apply)..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Fri Dec 16th, 2005 22:36 |
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Thanks for the timely response.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aunt Diana
Member Advocate
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Posted: Mon Dec 19th, 2005 17:05 |
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Hello again,
As anticipated the first day after taking mino is better....the 2nd day seems to be neuro herx this time around. All tolerable...just grouchy and irritable with cotton candy in my head and a slight headache.
Since I'v been taking the mino I've had two nights that I stayed up til 3a.m. working on projects, this is so unlike the Diana that usually is in bed by 10pm that I can't believe it. It seems to be the only time I get anything done. When I finally get to bed I sleep intermittently til 11 a.m. and feel groggy & weird the next day.
Today is one of those days. I hope I can make it to the post office to mail some packages before they close....if I can get that done I'll feel I've accomplished something.
That's all for now.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aunt Diana
Member Advocate
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Posted: Mon Dec 19th, 2005 20:18 |
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Before the MP, I had tried another protocol that may have helped somewhat. That doctor took many blood vials for lots of tests....the last result has just come in and I wondered if someone could help me understand it. (He is very busy and it may be a while before I could talk with him....but his notation on the lab result is "C4a is a major problem. This test was done back in May 2005
C4a --------------3860 ng/mL ............his notation is (<757)
C3a Level by Elisa--------326 ng/ml........ """"" "" (<357)
Does anyone know what this means? I'm going to my MP doctor's office tomorrow....for some blood work. Should I have them do this test again?
Thank you in advance for any information you can shed on this
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Dec 20th, 2005 00:33 |
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Diana,
This article explains that Complement C3a and C34 assay are sometimes used to measure inflammatory activity.
Your doctor is the best person to assess these tests for you but it would appear that the most potent, C3a is within the lab reference range and that the less potent, C4a, is elevated.
ELISA is the brand of kit used for these assays.
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aunt Diana
Member Advocate
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Posted: Wed Dec 21st, 2005 04:24 |
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Went to the doc for blood work today....asked him about the c3a and c4a tests....he said they indicated inflammation.. Well I guess that's pretty apparent.
I took everyone's advice on the "itch" and want to thank everyone....the bendadryl cream works very well.
Today is day 1 of a mino dosing and I'm not doing too badly. Went to doctor and ran some errands. Got my new prescription sunglasses that will work for me inside....from Zeiss....they are not cheap but convenient.
My herx today is achy and moody and quite intolerant. This too will come to pass.
____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aunt Diana
Member Advocate
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Posted: Fri Dec 23rd, 2005 17:48 |
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Things are going well. I've been mildly herxing. I have also been out and about doing Christmas things....I wait til dusk before I venture forth but I find the oncoming car headlights are horrible. These new halogen headlights should be outlawed IMO. Even though I wear my noirs, sometimes I wear 2 pairs) I wonder if those lights are bringing on some of this headache I've had for a few days.
Two days ago when it felt as if the headache was going to build into something pretty nasty I experimented with mino....took 25 mg and felt relief almost immediately
Armed with that information and with the willingness to experiment a bit more with the benicar as well I'm hoping to make it through the holidays fairly well.
I would like to take this time to thank Trevor Marshall, Aussie Barb, Meg Rangin and all the others who make this journey possible.....And to wish everyone a very merry Christmas and happy holidays, and a healthy and happy New Year.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
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Posted: Fri Dec 23rd, 2005 17:53 |
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Thanks very much Diana,
re the lights: Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal..
The Benicar will also help.. and if you need tylenol, can be used also.. see Why is my 'herx' more intense after exposure to Light & / or Vitamin D?
Phase One is a good time to be learning the effects of adjusting your meds to achieve tolerable symptoms... all good..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Tue Dec 27th, 2005 04:54 |
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Thank God things are back to normal and I can resume my normal(?) routine. Yesterday I spent most of the day in bed sleeping, very achy and exhausted from holidays....I was pretty well covered up and wore my noirs but don't really know about the food at one party I attended. I asked questions and steered away from what I knew would be high in Vit. D so I'm not sure if my herxing is due to a true herx or to going offf the regimen.
I decided to try the mino dosing Q12hrs (25mg) and benicar Q4 (40mg) and it seemed to help relieve the symptoms. I took my last mino this eve. and now wonder how to get back to my regular shedule. Do I just play it by ear?
I've been pretty discouraged and teary today..it seems to be pretty daunting and I've just started. I'm sure this is just emotional herxing and will pass. But all I can say is I HATE this @#@#!!!! disease. I just want to get back to the energetic and funloving person I used to be. I guess that's what we all want ....at least there's some hope for it now.
I'm up now at 2a.m. because I slept so much today. I'm having a hot toddy hoping it will put me back to sleep. Good night all.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aunt Diana
Member Advocate
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Posted: Tue Dec 27th, 2005 05:01 |
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| I forgot to mention how much my eyes are bothering me....I assume that's herx but is it also due to being in undarkened rooms....I had my noirs on most of the time..but for two days now they sticky, grainy and hard to use. I keep using the refresh tears but they don't really help much. Any words to the wise?
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
Research Team
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Posted: Tue Dec 27th, 2005 05:18 |
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Diana
It may take a couple of days to get back in balance from all the changes.. when you feel a change in the symptoms, for some it may be feeling more stable and for some it is a change for worse.. for guidance see the FAQ My Herxheimer reaction is too strong. What should I do?
warm or cool or wet compresses.. and rest... may also help your eyes while you are waiting for things to come back to normal..
Posting an Index of your schedule and dosing at the top of your post is a helpful quick glance guide back to Staff for replying and for other Members for reading and understanding .. 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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Aunt Diana
Member Advocate
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Posted: Tue Dec 27th, 2005 17:35 |
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Currently on 40mg Ben. Q6hr, 25 mg. mino Q48hrs.
I forgot to mention that my vitamin D level is now 16, according to my doctors most recent blood test. In October it had been 21. They forgot to test the Vit.D. I,25 but will do so in a week.
I think this is good news, yes?
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Aussie Barb
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Posted: Tue Dec 27th, 2005 17:57 |
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Diana
Your 25D is dropping as expected when avoiding D.. good news. see FAQ How often should I test D levels? What are the target numbers?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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jillian
Member in Phase 2
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Posted: Wed Dec 28th, 2005 13:40 |
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Diana,
Re dry eyes and eye drops... I found the artifical tears were not working well enough for me, had to use them at least once an hour. I got the lubricating drops and they're working much better (Walmart's Equate "Gentle Lubricant Eye Drops" about $6 for a 1 oz bottle). My eyes ARE herxing less these past ten days or so, but the drops are wonderful for me.
'til later,
Jillian from North Dakota
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Aunt Diana
Member Advocate
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Posted: Wed Dec 28th, 2005 15:07 |
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| Thanks Jillian, I'll go out and get some today....I mean tonight.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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