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expate
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Posted: Wed May 6th, 2009 13:58 |
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Believe me, I am enjoying... and feeling exceedingly grateful, especially since in the beginning, I was more photosensitive than I expected to be. It's amazing the difference eye contact makes in some social interactions. Yet, I can still retreat behind my NoIRs if need be.
 dette
Last edited on Wed May 6th, 2009 14:00 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Debz
Member
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Posted: Wed May 6th, 2009 21:18 |
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Hi Cynthia,
I was going to put film on my car windows, but it did'nt have Infrared protection and the http://www.marshallprotocol.com/forum2/2566.html for the Incident Radiation Tutorial isn't working. If I go shopping in incandescent light for a couple hours I get heart pains (1 yr MP). I have to be careful about exercise, because it spreads the bacteria. Dr. Marshall says exercise has a profound effect on our ill immune system and lowers it. I only do house work and walking for 30 minutes out of extra caution, I was very sick.
I used to take estrogen at a half tab and discovered that when doing Kid's skii school all covered up, my nipples ached as a side effect, so I stopped it. It was a year latter that I got on MP very sick with a thyroid @ .87; which went back up to 2.67 in after about 6 months. Glad your D is low, pressure on you're eyes is not good, herx slow, and steady.
Debbie
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Cynthia Schnitz
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| Joined: | Wed Apr 8th, 2009 |
| Location: | Arizona USA |
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Posted: Fri May 8th, 2009 20:18 |
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Very interesting about the nipple discomfort. I had such a problem, and can't quite figure it out. I had taken tri-estrogen from a particular compounding pharmacy for many years. I then found I could could get it directly from the current Rx insurance company without the large co-pay. It was exactly the same mixture of estrogens, but I started getting terrible nipple pain, so I finally went back to the old pharmacy and the pain ended. I'm wondering if the problem was with the inert ingredients.
I have since changed to estridiol with no problem. Getting off topic here, but I started at 1 mg. Testing showed I could go higher, so went to 1.5 mg as a compromise, but I would swear that this last change shut down my IP completely. I am now at 0.5 mg, and have as yet (3 weeks) had no hot flashes, and IP is on its merry way. Will be testing this effect later when I have time. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10ng/ml 10/10, (preMP 125D/25D=47/43) | My progress
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Debz
Member
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Posted: Fri May 8th, 2009 23:16 |
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Here's a chart (PMID 12055341, 11295155) shows the D chart. Here is Amy Proal's D dysregulation at http://vimeo.com/17886-40 . Hormones change fast without light. I guess that is why I loved walking in the dark snow and the cool air all covered up in snowpants and helmet. That reaction is from to much estrogen as a Dr once told me.
Debbie
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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expate
Member
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Posted: Thu May 14th, 2009 20:26 |
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Here's an interesting quote from an article in today's New York Times. I don't know if it's true or not, but thought I'd share.
"UV radiation also impairs the skin’s immune system in alarming ways, Dr. Baron said. Sun exposure reduces the number of watchdog cells that help recognize and respond to antigens, and alters their function so they are as effective as dozing prison guards. “This effect on immune suppression can set in even before a sunburn,” she said."
The full article can be found at: http://tinyurl.com/r7lhzm
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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leannemaready
registered
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Posted: Thu Jun 4th, 2009 05:31 |
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Hey Alayne,
I'm with you on K-Mart! That's where I was when I had my first major "episode" a few years ago. I was checking out and completely forgot my pin number. I had to ask the lady to run it as credit, but then could barely sign my name and felt like I had just had a stroke. I had the metallic taste in my mouth, and didn't think I would make it out to my car. Once I got there, I whirled into a tornado of a panic attack. Then of course I checked myself into the ER because I thought I was dying and they found nothing wrong. Just sent me home with Ativan. (The first of many times to follow).
K-Mart still REALLY bothers me. But I seem to be okay outdoors. Weird.
Last edited on Thu Jun 4th, 2009 05:31 by leannemaready
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Crohn's 16 years, Lyme & friends 4 years, 25 D=31, 1,25 D= 71 (08/2008), current 25 D= 17 (06/2009), other symptoms pre-MP: numbness/ tingling, metallic taste, severe anxiety, insomnia, brain fog, GI Palsey. Currently in Phase 2 and doing great!
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Juanita
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Posted: Mon Jun 8th, 2009 23:52 |
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It might not just be the lighting in KMart, eh? That's a pretty loaded store for airborne chemicals. If you also happen to be a bit chemically sensitive, places like KMart and Walmart are brutal! Woof! I haven't been able to get into one of those type stores in years. Tires, air freshener, formaldyhyde on the clothing, hair products.... holy hanna. Tons of scents and VOCs.
I hope the ER people were nice to you. Panic attacks are not fun and kindness is as important as Valium or Ativan, isn't it? 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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leannemaready
registered
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Posted: Tue Jun 9th, 2009 13:03 |
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Yes! A few other stores bother me as well. There's an arts and crafts store here that nails you with scented sache's (envelope things to put in your drawer?) as soon as you walk in the door. Whew!!! And it's funny that I've noticed for years (actually my mom noticed first) that clothing stores make my eyes bloodshot. Then ten minutes in the dressing room and then its time to make a decision? Yeah right! I usually have to buy all the "maybe's" and go home and re-try, and then take back to the store what doesn't work, (and get in and out quickly). It's like I become temporarily mentally handicapped in the store. Makes like interested, huh? : )
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Crohn's 16 years, Lyme & friends 4 years, 25 D=31, 1,25 D= 71 (08/2008), current 25 D= 17 (06/2009), other symptoms pre-MP: numbness/ tingling, metallic taste, severe anxiety, insomnia, brain fog, GI Palsey. Currently in Phase 2 and doing great!
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eClaire
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Posted: Tue Jun 9th, 2009 16:47 |
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While never as sensitive to chemicals as Juanita (except for perhaps when it comes to things like fresh paint, which would have been deadly had I stayed in its presence), like you I noticed problems with stores. I would particularly notice when K-Mart or other stores like that would overstock for the new college school year. My normal inability to make decisions in stores like that would not only get worse, but I'd walk in looking for one thing, and intending to stay for only 5 to 10 minutes, and an hour later find myself still wandering around mindlessly. I had to stay away from those stores during those times.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Support Team
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Posted: Tue Jun 9th, 2009 21:50 |
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Claire,
Yes, agree with you totally. I did the same exact thing and wandered through the store as you say, because it is hard to recognize, kind of takes the brain over...I like to relate it to the Stepford Wives...that's probably how I looked!!! Once I started reading on the MP about all of these light/chemical sensitivity connections it was incredible to finally understand the fog, spaciness, and what I now know were petite mal seizures.
After almost two years on the MP, indoor I'm generally pretty well without my NoIR's but outdoors is a trigger, when the sun is out. I treasure cloudy days that's for sure and am grateful for living in Michigan, where we get plenty of those! Yet I do notice brief periods where even outside I'll be ok, better than I can remember.
No one will ever convince me that schooling and working under cheap fluorescent lighting did not have something to do with some of this!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Debz
Member
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Posted: Wed Jun 10th, 2009 01:21 |
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Hi Yous,
In 1975; 3yrs after my mothers sun allergy, I broke out in ankle hives from the Orlando Forida Black Flag days while marching in the sun. I was put in the Navy's hospital for a month, under bright lights and given penicillin (ya, thats what they use in lab to create more L-forms). Got an Honorable Discharge and was told I was allergic to penicillin.
In 1996 I remember being under florescent lighting all morning and I would try to do oral exams for dental procedures.....very slow, but I would get up at 3am to study twice as hard to get 98% averages. The 45 minute drive back home was dangerous....as I tried to exercise in my seat to stay awake.
In 2002, I was under lighting 18hrs a day (gym, dental office, photo lab, home-gardening), and also on the weekends cross-country skiing.....boy my head felt ill and I'd have a glass of Kalua and cream ocassionally.
Good News....Ken just came home and told me his Dr. buddy wants to start MP! I quess what we had told him, had to have time to sink in for a year. He's been asking Ken about his arthritis and thinks it will help him.
Debz
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Alayne
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Posted: Wed Jun 10th, 2009 10:41 |
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Leanne, I actually order everything online, then I try things on at home. What fits (yeah!) stays, and what doesn't (most of it) goes. I've had to special order for many years due to really long arms and legs. Either that, or sew my own clothes (which I did for years growing up). I then either return the online purchases at a local store or send them back w/low shipping costs. It's great! I miss all the lighting and heartbreak that nothing in the store fits. I actually really dislike shopping now. I used to love it, but have been ordering clothes and other things online since the mid 90s.
Anyhow, as soon as I decide what I'm keeping, I wash it immediately. New clothes are covered with chemicals. I don't keep them in my room. Of if I do, I put them into plastic until I can wash them.
Ah Claire and Deb. I have many memories of "shopping" for hours, yet not even returning with a thing. I'd literally get lost in the maze and wander for ages. At least for the grocery store, I finally realized (1.5 years ago) that if I didn't carry a list and follow it, I'd be in there forever. Now I have little problem whipping in and out. Same for clothing or other stores - take sme 5-10 min to see if I'm going to find something. I'd not thought of this before, but this is something to be proud of. It's like #38 of the useless things I do, that actually do mean something. LOL.
That said, my DH has gotten "stuck" in Home Depot and such places for hours. Literally. He's gone in for one thing and I've discovered him there hours later (like 6 hrs)...with not even the original item he looked for. Those lights are brutal, not to mention the complexities of decision making for thought up ventures that lose their power as soon as those lights hit. Even the Home Depot folks say so. That said, making decisions when one is brain challenged is...well, challenging. We've actually really needed something from there for a while now, but he's adverse to going. I totally understand why and certainly don't push!
Juanita, I had to stay out of stores for years because of my chemical sensitivities/allergies. Ashma was a close friend of mine. That, plus hives, neurological breakdowns, anaphylaxis, etc. However, I don't have those reactions any longer. I can walk into a store and do fine with the scents/chemicals. Granted, I don't throw myself at a perfume counter because I actually really dislike perfumes. But I can now sniff them without going into anaphylactic shock or breathing like my lungs are choking up. Walking by the counters gives me great joy though...if only because I can do it and still be coherent on the other side.
Either way, I still have to wear a hat (ARHG!) with "unnatural" lighting. Granted, I have to wear a hat for natural light as well. It just seems more intuitive for that, than a bunch of tubes throwing out harmful rays.
C'est la vie for some things like flat hair. Yeah! for others...Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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Juanita
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Posted: Wed Jun 10th, 2009 21:45 |
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What good news, Debz!! Hurrah!!!
I am so jealous, Alayne. I'm still stuck at home completely. 22 months of MP and I'm no closer to being able to spend time with anyone not totally chemically safe.
So I've only met my oldest daughter's new man ONCE. Once. And they are talking about the idea of marriage. At the moment, they'll have to get hitched without me or Sarah Jane being able to watch. I managed her graduation last Jan and it costs me for three months afterwards. I just couldn't do that again. Psychologically, I'm whupped. This MCS isn't budging.
I can't wait until it is gone for good. I won't even bother to wave goodbye. I'll moon it instead.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Aunt Diana
Support Team
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Posted: Thu Jun 11th, 2009 04:31 |
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Alayne,
I have been shopping this way now for a few years. Could you share with us your favorite sites for fashionable gear.
I have been using Coldwater Creek, LL Bean and a few others I can't think of right now. It works out well for me but I could use a bit of OOMPH in my wardrobe.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Deb Grabetz
Support Team
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Posted: Thu Jun 11th, 2009 11:42 |
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Aunt Diana, I don't know about that, your avatar is quite chic!
All of these shopping posts remind me so of many years of just loathing going to the grocery store. Grocery shopping somehow seems the chore that is automatically designated to the females in the family and after my first flare in '90, complete neuro breakdown, I could barely manage it anymore. I don't like to drop names, so I won't, but one large chain in particular would just about put me flat on the floor. (and back then I didn't know why!) I still avoid going there for groceries because I still can't handle the lighting.
...Guess that explains why I still don't enjoy grocery shopping...looks like I can blame it on Th1, instead of just being lazy...!!!! Now that I wear glasses it is easier to look at items without my NoIR's...my UV block on my glasses help a lot in some stores, I manage for a short time without the NoIR's. 
I always knew my light sensitivity would be the last to go......
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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expate
Member
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Posted: Thu Jun 11th, 2009 13:55 |
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Diana,
If you're looking for "ummmph" in your wardrobe, I've found bodenusa.com a fun place. The quality of construction and materials has been very good as well. Just be sure to check the sizing chart since most clothing is in UK sizes.
I confess, I mostly shop the sale section... unless I just can't help myself.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Juanita
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Posted: Thu Jun 11th, 2009 21:51 |
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For me, the overhead lighting has always made me want to buy more. I could control myself in regular stores, but in grocery stores.... veggies, oh, my! I'd just about fill the cart. OCD at least landed on fresh food, though, eh? Whew....
I'd like to know where to shop when you are a small woman with weight on but most of it on the belly. Buying pants is a killer!
____________________
MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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shkull
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Posted: Sat Sep 5th, 2009 12:22 |
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After all those expericence I wonder why these remarks by Trevor are doing round in the thousands of FAQs or did he botch up the figure.
Photosensitivity is just that, photosensitivity, and it will gradually disappear with time. You need to keep an eye on your general immunopathology and make sure you are progressing on-track to recovery, but otherwise, when you can enjoy the outdoors again, it is a good idea to do so. A little at a time.
As one progresses through Phase 2, the risk of setback from occasional exposures becomes less and less. Eventually the risk disappears (although you will probably never want to sunbathe again). The only way to find out is to try a few “baby-steps” and see. I usually say it takes 18-24 months to get back to any sort of “normal” sensitivities, though.
~ Trevor Marshall, PhD
and this one also
it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues
..Trevor..
How many of membere have completed the MP in two years, not a single I think as evident in phase 2 study going on at MP.com. Even satge5 occurs after two years or more. Paul Abert in an interview on bacteriality.com also mentioned that MP takes two years of your life but he himself has been in dark for more than the stated time of two years. I think all those remarks were to lure more people to MP thinking they will probably stay longer after they feel better over time.
With some jobless self financing persons it might not be possible to stay more than a prementiond time limit especially when MP takes over all family members and their activities and not just one person.
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Deb Grabetz
Support Team
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Posted: Sat Sep 5th, 2009 13:05 |
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Hello shkull,
I've read these notes on light sensitivity that have been posted by Trevor also...I don't believe he is saying that when light sensitivity goes away, we will be "cured". It seems he is saying that light sensitivity starts to improve after two years on the MP.
In that case I would have to agree with Trevor. Within the last 3-4 months I have noticed less urgency to remain out of the light. It came back so gradual that it took me one day to realize that I wasn't as sensitive to being in daylight as I had been. In fact, I spend very little time now in the dark...When I go out on full sunny days, I am still very cautious, long sleeves, sunscreen, NoIR's and try not to make it a habit of staying out all day but there is definitely a huge difference in my response to daylight now as compared to two years ago when I started the MP. I realized that for me two years was just about the mark for me to noticing less sensitivity. I'm sure that in another year of being on the MP I will see even more improvement.
I had my NoIR's off for awhile on a bus ride during the day last week and noticed although sunny my eyes were not giving me trouble. I don't make it a habit of going without my NoIR's they always contribute to my feeling calm...but had my glasses on that day so I could read a map... So there has been some definite healing going on to progress to this point, for me. When I'm feeling a bit on the rough side from ramps, I will recuperate in my darkened bedroom.
Deb
Last edited on Sat Sep 5th, 2009 13:09 by Deb Grabetz
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Sallie Q
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Posted: Sun Sep 6th, 2009 02:04 |
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my doctor advised my partner I would show significant improvement after nine months. Also strongly advised I may not travel more than an hour or 2 away from home for around 14 months. I think the Px was about right.
My improvement at 9 months is apparent, but not obvious to others.
If you see me every day and have to live with my muscle cramps and varied cognitive lapsing I can not blame you for not registering the improvement (of cause on my paranoid days, I do blame you, but they are much less frequent days.
Round about nine months D.H. started complaining that I did not have any measurable progress. Well he tends to ignore what I put forward as measureable, but I knew by then I had enough improvement that if it was permanent I would have a much better future than past. However, most of the startling improvement is internal: confidence, muscle strenghth with no exercise --love that one  ; being able to relax, putting up with other people without becoming easily exhausted.... I can measure it, but it is very subtle and how would other people know?
My whole past life seem to be an act in a play where others know what they are doing (aint neccessarily so) and 'I can cope' when at heart I knew I could not , was in increasing decline and later worked out I was heavily in denial as well.
Just this week, (and he has not said anything directly, but for the first time in 15 years he is leaving me on my own to go on a postponed business trip )
I expect he is either reassured that my MP support person will be able to keep an eye, OR just maybe he is beginning to notice improvement. My closest long serving workmate has been sayng for 3 months now that I am improving, and someone else at work has asked me for more info on what I am doing (we used to discuss health info in the news, so I give her some MP info. but warn that the commitment is like that to get a univ. degree.
In response to Skull's query
I guess I am making such good progress that 2 weeks from my MP anniversary, I can understand someone reporting they were ready to come off the program in not much more than 2 years, however
Turns out that some tissues are much harder for the MP to reach into (that is not exactly news, I think the research professional team posts about this early on). The tricky bit is that more biofilm seems to turn up after everyone thinks a particular organ is clear, organ specific herx seems to stop and start again, (as does light sensitivity). It is like cleaning your teeth, may look clean, may feel clean, I may use waxed thread and fancy toothbrushes, but even after doing all that the dentist may have a go and get a bit more out. The only person I know who thought they had completed around 2 years 2 months actually took 3 years to my knowledge. I expect to take longer as I am older and the more I learn about MP the further back in my life I can see warning signs -- aggressive treatment with penicillin at age 10 may have pushed me towards Sjogren's half a century before I heard the word.
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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