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KFaucher
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Posted: Mon Jan 31st, 2005 16:44 |
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Finally got my Vit D results from just before starting Benicar.
12/2/04 1,25D = 48 pg/mL 25D = 19 ng/mL (pre-Benicar levels)
8/2/04 1,25D = 57 pg/mL 25D = 30 ng/mL (pre-vit D avoidance)
I am very pleased with these levels. My light avoidance was not as strict as it has been since starting the MP, so I expect my 25D level will continue to drop down into the target zone.
Ken
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KFaucher
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Posted: Wed Feb 9th, 2005 19:44 |
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2 months on the full MP!
Still on 50mg Mino. Herxes have been lasting a little more than 48 hours, so I am on 2.5 days. Herx is minor except for about 4-8 hours near the end of day 2 when herx is pretty strong. Eyes have been very sensitive.
Have decided not to attend the conference in Chicago. I've been operating too close to my limits and I think the trip might take too much out of me. Guess that is the catch-22 of patient conferences.
Ken
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KFaucher
Member in Phase 3
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Posted: Sat Feb 12th, 2005 09:42 |
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Funny how things sneak up on you. I just realized that my sleep pattern has normalized. For the last 2 or 3 weeks I have been sleeping straight through 7 hours. A deep sleep, a few dreams. Very restful! Nice change from pre-MP which was no dream and not restful, and from early MP which was broken and hyper dreaming.
Brain fog, cognitive difficulties, have also reduced tremendously!
Doc has officially upped Benicar Rx to 4/day.
Ken
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KFaucher
Member in Phase 3
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Posted: Thu Feb 24th, 2005 18:33 |
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Day 76 of full MP - 50mg mino with minor herx, upping to 75 soon.
Things continue to sneak up on me.
Coming back from the vets the other day, something seemed strange. I realized that I had not put on my gloves. I could feel the texture of the steering wheel! The strangest part was seeing the pale white vampire hands holding the wheel.
The biggest thing to sneak up on me this week was death. It seems like I just looked away for a moment, and my wild young dog was suddenly old and cancer filled and looking to me to for help from her suffering. Like many of us chronicly ill, I long ago made peace with my own death. It is much harder to accept my dogs death. Makes herxing seem like nothing. (Dakota 1993-2005, a good dog)
Ken
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jolbell69
Health Professional
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Posted: Thu Feb 24th, 2005 19:58 |
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Dear Ken,
I just wanted to offer you my sympathy - I lost a dog 18months ago, and I think of him every day. I have another dog now, and he keeps me going every day. They are such good companions especially when we are ill all the time.
Take care,
Jo.x
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DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Cortef10mg,Florinef0.1mg,Prozac.StartedMP:25June04.
25,D=16.7ng/ml,(Jan05)No1,25Ddone.Benicar,20mg,q6h.Started Phase I:19May05.Started Phase II:16Sept05
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KFaucher
Member in Phase 3
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Posted: Tue Mar 1st, 2005 18:49 |
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Thanks Jo, my remaining dog keeps me going.
2 50mg pills do not add up to 75mg! I bumped up to 100mg friday evening . Ouch. Very strong herx, multiple pains, extreme fatigue, return of the brain fog. Lasted 4 days. It's interesting, the only time I get the classic fatigue and brain fog is when I have a very strong herx. As long as I keep the herx to a reasonable level, limited fatigue, very limited fog. Actually, except for a couple of herxes, I have been mentally sharper than I have been for years.
I wonder if the fog, fatigue, malaise et.al. is actually a secondary reaction to the herx. It feels as if there is point where the cytokines, dead cell junk, antibodies and whatever reach a critical level and these classic symptoms kick in. Perhaps by going slow and easy I can avoid further brain fog?
I am dropping back to 50mg today, then wil increase to 75mg. I'll try to remember to cut the pill this time!
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KFaucher
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Posted: Thu Mar 10th, 2005 19:53 |
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3 months on phase 1! Mino 100mg!
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DNStog
Advocate
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Posted: Thu Mar 10th, 2005 20:27 |
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Way to go, Ken, 100mg mino! Also, thanks to your advice and Barb's, I dropped back to 50mg for my vacation which starts tomorrow I let 36 hours pass between doses (per your suggestion) and felt much more comfortable. I'm going to try 50mg every day for a week...if no sx start up...then try 75mg every 48 hrs, again when I return. Wanted to be up to 100mg by the end of the month for next doctor's appointment, but not going to push it.
Hope your 100mg mino herxing is quite bearable and that you will continue to look to the future. My favorite saying is by Martin Luther, " Surely as I know the world will end tomorrow, I would plant an apple tree today."
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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KFaucher
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Posted: Fri Mar 18th, 2005 19:26 |
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| MP Day 98, mino 100mg / 3days, moderate herxing.
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KFaucher
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Posted: Sun Mar 20th, 2005 11:09 |
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Mp day 100, 100mg mino, little herx
I have the phase 2 info and will likely move up in 2-4 weeks. I am rather enjoying this period of reduced herx. Commiting to ph2 will be like starting over again. I will milk all I can from ph1, then suck it up and make the leap.
The vernal equinox is here again. Looking back at the winter past, I realize that despite all the herxing, I have been healthier than "normal". I have not had sinusitus or bronchitus all winter. Can't remember the last time that happened, at least 10 years. No flu, not even a cold.
Ken
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KFaucher
Member in Phase 3
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Posted: Thu Apr 21st, 2005 20:46 |
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For anyone who is interested, I am reporting in from phase 2.
I am nearing the end of my second cycle of phase 2 abx, and it has been interesting. On each cycle I have had 3 days of strong herx, one day knocked right off my feet. I also have 3-4 days of mild herx, and 3-4 days of feeling absolutely fantastic. On the good days I feel much better than I was pre-MP. The result is that I have about a week of feeling pretty good, half great, half not too bad. And three very nast days. If the herx were more constant, I would not be able to handle it for long. But the cycle offers enough good days to enjoy life so that the bad days become bearable.
There is light at the end of the tunnel, so make sure you wear your NoIR’s!
Ken
"Happiness is nothing more than good health and a bad memory." Albert Schweitzer French philosopher & physician (1875 - 1965)
"Be careful about reading health books. You may die of a misprint." Mark Twain US humorist, novelist, short story author, & wit (1835 - 1910)
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spacee
inactive member
| Joined: | Sun Sep 12th, 2004 |
| Location: | Florida USA |
| Posts: | 274 |
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Posted: Mon Apr 25th, 2005 22:19 |
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Ken, Thanks so much for posting as it is very encouraging to me. I have had CFS for 19 years and have high hopes that it will be just a memory for us all here.
 Spacee
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CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10
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KFaucher
Member in Phase 3
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Posted: Sat Jul 23rd, 2005 20:02 |
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Day 225 on full MP, about 3 ½ months on phase 2 (standard)
The phase 2 forum is so active that I would have to go searching for my thread on the back pages, so I thought I’d check in here instead. Just kidding, but that forum is probably the most active on the site.
Phase 2 continues to be an interesting roller coaster for me. I have strong herx for 3-4 days, feel great for 3-4 days, and the rest are kind of transition days. On days when I feel good I have much more energy, much less sun sensitivity, and no brain fog. I actually feel better than I have in years. When I am herxing strongly, it can be pretty rough. Knowing that it will end on a predictable schedule makes it much easier to deal with.
The herxes have been varied. At the worst it is generally full systemic involvement, fatige, fog, etc.. But different systems seem to get hit. I think I have had mild cardiac herx, had a week of lung herx (just like bronchitis), had a week of lowered blood pressure, days of very frequent urination, occasional days with very stiff sore joints, and other things I can’t think of right now. I admit that I am a horrible research subject because I don’t keep track of these things. To be honest, I would rather forget them.
There are now a couple of different options for phase 2. I am on the original (standard) version. As far as I can tell I seem to be responding much like the earlier sarcies. After more than 3 months on phase 2 I am only taking ¼ of the 2nd Abx. Of course, I am not rushing it. This is going to be a long haul anyway, so why push it? I also take an occasional "vacation". I took a cycle off in May, I will take two cycles off in August, and maybe another in October. It might add a short amount of time to my overall recovery, but herxing gets old in hurry, and I believe in taking a little time to enjoy my recovering health.
In the book "Animals in Translation" Dr. Temple Grandin used the phrase "bad becoming normal" . It is a good description of how our deterioration has progressed. The same thing happens in reverse. Health can creep up on you too. Every now and then someone will mention some symptom and I’ll think "yeah, I have that, or at least I used to. Hmmm, wonder when that disappeared!". If I tried to list all the things that have improved, I would forget half of them. With the MP, good is becoming normal. Things are a lot better going in this direction.
Ken
"Go confidently in the direction of your dreams. Live the life you have imagined." Henry David Thoreau, US Transcendentalist author (1817 - 1862)
"An invasion of armies can be resisted, but not an idea whose time has come". Victor Hugo, 'Histoire d'un crime,' 1852, French dramatist, novelist, & poet (1802 - 1885)
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alayne
Member in Phase 3
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Posted: Thu Oct 13th, 2005 02:02 |
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Hi Ken, I just read through your Phase 1 progress report with great interest! Love your outlook, sense of humor, and the fact that you quote Thoreau. Even skipped my one TV show tonight reading up. 
I know the Phase 2 forums are really busy because so many CFSers and others disappear there, never/rarely to return to let us "plebians" know how they're doing. If you have a free moment in the next while, could you possibly pretty please drop a line here with a little update? Hopefully a happy one!
Thanks so much,
AlayneLast edited on Thu Oct 13th, 2005 03:21 by alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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KFaucher
Member in Phase 3
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Posted: Thu Oct 13th, 2005 19:59 |
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Hi Alayne,
The problem with updating on phase 2 is basic monotony. This is like a holding pattern; keep Abx at levels that keep the herx going without a complete crash. If I hit the dose right then I get a few days of uncomfortable herxing that I can still work through, and a few days of feeling pretty good. If I underdose, I do not get much herx and feel very good. If I overdose, I get debilitating weakness and fatigue and mild depression for the entire cycle. So while the desire is to push the doses up and get this over quicker, it just can not be done. I have been on phase 2 for 6 months and am not yet on half a pill. On phase 2 progress happens slowly and one learns patience.
Ken
"All endeavor calls for the ability to tramp the last mile, shape the last plan, endure the last hours toil. The fight to the finish spirit is the one... characteristic we must posses if we are to face the future as finishers." Henry David Thoreau
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alayne
Member in Phase 3
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Posted: Fri Oct 14th, 2005 22:46 |
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Thanks so much for your post Dave! You sound incredibly bored, but pulled out a great Thoreau quote anyhow.
I can see that the uncertainty and reality of what a herx's nature will be/is has to wear away at one's psyche and that the reserves of patience or tolerance must often vary from pill to pill - even though one's happy the bacteria are dying. But like you say, it's the times of feeling better than pre-MP which lift you up again. Heck, just avoiding sunlight and D stopped my migraines!
Finally realized last week that CFSers and "Lymies" typically take longer than the others to feel much better. You're in the 10th month now, right? Can you possibly mention any specific improvements you've noticed in the last 6 months? I'm totally not asking you to prove yourself Dave! It's just that I, along with other pre-MP/Phase 1 folks who are feeling "crappy" right now would just love to hear some more about specific improvements later on to psyche us up, somewhat lift the fear of uncertainty, give food for fodder when fighting the "unbelievers," etc.
I'd also love to know if you've been able to keep working. The last time you mentioned it, you said the light was bothering you and you might have to stop. If yes, could you possibly tell me how you manage it?
I'm already very photosensitive and I don't even have my NoIRs yet. I cover up fully twice a week when I have to drive 1.5 hours (LA traffic) to teach for 2-3 hours. Even fully covered, I feel the effects of the sun in shakiness, slight headaches, pains, and increased brain fog. It's blazingly bright here more often than not & the only positive I can find is that we get no snow reflection.
I ask you because I'm a)hoping for your sake you've been able to keep healing AND working, and b)if I can't work my 6 hours/week, I won't be able to live long enough to die of CFS, let alone do the MP. (Unless my family takes out loans to cover me and right now they're really scared about everything.) I know that everyone is different and I won't know until I'm doing the MP, but any positive news is welcome.
If I've asked and/or said too much, I profusely apologize in advance. Promise that I'm not stalking you either.
Again, thanks so much for your words and quote...hope you're in a good day "phase" today!
-Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 15th, 2005 00:30 |
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Alayne,
Please do not take this as a criticism, but protecting your eyes with shades like the NoIRs is an absolute necessity. You just won't believe the difference. It is important to understand that the moderators here have been through (or are going through) the worst of it. It is more important to listen to what they say, and accept it, than to make observations like "CFS and Lymies typically take longer than others."
It is true that some folks are sicker than others, but if you look at Eurico's Nicola, for example, she is a sarcie that is having just as bad a run as any of the CFS or Lymies. Generalizations tend to over-simplify the real issues. Additionally, some folks complain and some do not. It is just not correct to characterize the patient groups as fundamentally different.
..Trevor..
Last edited on Sat Oct 15th, 2005 00:47 by Dr Trevor Marshall
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KFaucher
Member in Phase 3
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Posted: Sat Oct 15th, 2005 18:09 |
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HI Alayne,
Just to add some subjective support for TM’s post: When I started this I did not believe that I would have severe sensitivity problems, after all, sarcies often have eye involvement, but not CFS. I figured the 40% would be more than enough in the office, and my 15% glacier glasses outside. Wrong, wrong, wrong. I very quickly devolved into wearing the glacier glasses in the office, and adding 2% NoIR’s over them for the outdoors. It is hard to imagine just how dark you have to go until you experience it, but be prepared. For a trip that long you may need less that 2%, maybe some good polarized sunglasses under the NoIR.
All that being said, I am now using 40% NoIR clip-on’s over my regular Rx glasses at work. Outdoors I am using glasses that are (I think) about 7%. If it is very bright or I will be out for an extended period, I will add the clip-on NoIR’s. I can get away with clip-ons only because my glasses have full side shields and block peripheral light better than the NoIR models.
As far as working goes, you have me confused with someone else. I often have to reduce my hours, but I have not contemplated stopping entirely. Light has not been a big problem for me. I only have a 10 minute commute and work in an office. Since we do computer drafting, the 2 of us in the office generally keep the overhead fluorescent lights off to reduce computer glare. The only thing I have had to due is eliminate the occasional field work (surveying) that I would normally due occasionally. I can now work outside occasionally.
The only symptoms I have left are weakness, fatigue and (reduced) sun sensitivity. Brain fog is becoming a memory. Joint and muscle pain left months ago. I am starting to cautiously add some strength exercise to try to build up some muscle tone. Sometimes I do get frustrated and impatient, but when I look back at how much better I am than last year I guess I can’t really complain.
Ken
"I've had a wonderful time, but this wasn't it." Groucho Marx
"Nothing can tear you apart / If you keep living straight from the heart
Though you know that you're gonna hurt some / The magic will come " Jimmy Buffett and Will Jennings
"We all agree that your theory is crazy, but is it crazy enough?" Niels Bohr
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alayne
Member in Phase 3
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Posted: Mon Oct 17th, 2005 23:39 |
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Dear Dr. Marshall,
I do indeed believe in the NoIRs! I ordered 3 pairs a week after seeing your site! Until they arrive, I’m wearing dark amber glasses meant for sun and snow in high altitudes both indoors for TV and computer and my twice weekly drives.
I apologize if it seemed I was trying to oversimplify the real issue, which for me is that we’re all sick for the same reason and finally have a way out. I am just trying to figure out my finances. The length of time I have to figure in must be realistic since I’ll have to find a way to borrow money, especially if I can’t work. I also thought it was safe to mention because of what you and Meg posted Oct 7th at http://tinyurl.com/acdo6 I certainly didn’t mean to exclude or trivialize anyone and their experiences!
I am so excited about the possibility of a real life, thanks to you and the words and experiences of the others here.
Thank you thank you.
-Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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alayne
Member in Phase 3
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Posted: Tue Oct 18th, 2005 00:06 |
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Ken, thanks again for another great answer! To be honest, I’ll not be able to work this week anyhow because I haven’t been able to walk again since Saturday, so will skip that sun exposure.
You, Dr. Marshall and a few pointed PM’s have convinced me that I’ll probably not be able to get out in the sun for that length of time without really hurting myself – even with double or triple NoIRs, seeing as how I’m already pretty photosensitive. And, my caretaker/bf finally convinced me yesterday that sun or no sun, I won’t be able to teach again for quite a while anyhow. I wanted to be optimistic about at least partially supporting myself, but will have to find other avenues of support. <gulp>
You know what? You wrote I can't work and protect my eyes. I can't protect my eyes and work. on Jan 28th, but it was entirely in regards to your eye herx, not working in the future. I so misinterpreted that one! Again, I’m really glad that you’ve been able to continue working, even with the accompanying difficulties.
And finally, I just look at what you write about your improvement and am again certain I will find the money to survive and do the MP - I’m determined I’ll be able to say these same words to another newbie and everyone else who’ll listen!
Thanks again for the input Ken, and many congrats!
-Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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