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YoKoMo
Member in Phase 3
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Posted: Wed Dec 26th, 2007 03:59 |
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MP meds:
Olmesartan 40mg/q6h, 12/14/07 Minocycline 25mg/q48h
Non-MP meds: none
Natural light exposure:
15 min/day outside, covered w/NoIR
45 min/day inside w/lights above 30 Lux, covered w/NoIR
Recent Symptoms/IP:
Four rounds of minocycline.
First two rounds: Gastrointestinal pain, dizziness (esp. when rising)
Last two: Flu-like symptoms.
Light sensitivity started after 3rd round of minocycline.
Nausea on fourth.
Comments
Olmesartan alone (first two weeks) lowered all symptoms.
Opting out of Christmas celebration today due to fatigue, and lights hurt too much, even with NoIRs.
Food sensitivities (for the record):
Gluten, all dairy, seemingly trace chemicals—all create brain-fog.
Expecting second D-level results this week.
Symptoms (pre MP, current)
Brain-Fog 8 5
Fatigue 5 7
Joint Pain 2 6
Tinnitus 5 5
Anxiety 4 2 (general sense of anxiousness reduced with Olmesartan)
Food Sensitivities 7 haven’t tested these
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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VEZ R.N.
Health Professional
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Posted: Wed Dec 26th, 2007 05:07 |
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Kelly, thank you for the concise update.
Sounds like you are managing quite well....good job! Have you tried an extra 20mg of Benicar sublingual (under the tongue) for the increased fatigue and light sensitivity? This can be used anytime you have an increase in symptoms and is usually very effective for most members.
Many members report a great improvement in food sensitivities during the later phases of the MP so hang in there. Keep up the good work and Merry Christmas.
Best Regards, VEZ
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Foundation Staff
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Posted: Wed Dec 26th, 2007 07:11 |
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Hi YoKoMo,
Welcome to our study site for the Marshall Protocol. Please read this Important background information.
Thanks for letting us know you have started minocycline. Please review the information threads pinned to the top of this forum so you will be able to locate answers to frequently asked questions. See What should I know about Minocycline?
You don't have to cover your skin under artificial lights but you would benefit by reducing artificial light to 30 Lux. See Light avoidance simplified
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Let us know how it goes........
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YoKoMo
Member in Phase 3
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Posted: Mon Dec 31st, 2007 08:31 |
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14 days since first Minocycline. Same IP abating a little.
I'm wondering how often I should be checking my D levels (to see if I'm in the right range).
I'm also wondering what the typical/average time people ramp up to 50mg/48 Minocycline.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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VEZ R.N.
Health Professional
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Posted: Mon Dec 31st, 2007 15:29 |
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Thank you for the update Y.
It will take some time for your D levels to decrease and here is a link that will give you info regarding that. How often should I test D levels? What are the target numbers?
If your initial 25-D was above 20ng/ml: It is recommended that you retest your 25D to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D..
As the phase I guidelines indicate, it is time to increase Mino when symptoms have become tolerable so you will have to make that decision based upon how you feel. Keep in mind that some find and increase in symptoms when it is time for an increase, so be mindful that staying at one dose for too long may have that affect. Hang in there.
Happy New Year, VEZ
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YoKoMo
Member in Phase 3
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Posted: Wed Jan 9th, 2008 20:51 |
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MP meds:
Olmesartan 40mg/q6h, 12/14/07 Minocycline 50mg/q48h
Very liitle IP @25mg Minocycline so I moved up to 50mg three doses ago.
Non-MP meds: none
Natural light exposure:
35 min/day outside, covered + NoIR
Recent Symptoms/IP:
Lightheaded when rising up.
Occasional Dizziness
Body aches, pretty extreme—pains most joints, including finger joints. Lower back pain
Light sensitivity medium.
Hands fall asleep when not moving.
Tinnitus louder than usual
Occasional brain fog
General muscle weakness
Comments
I’ve worried that, for reasons unknown, that this will stop working for me. Having a strong IP is continued good news to me; I’ve never had happier aches and pains in my life.
I’m delaying my Minocycline today until my current IP decreases a bit—seems like the body should have a chance to catch up.
I so appreciate this website in that when I have new symptoms I can find others who have had them and thereby know that I’m progressing. I also appreciate people’s optimism—lots of pain, but lots of determination, perseverance and hope.
Seeing continued IP is increasing my hope. The thought of being well is…it’s like a dream that appears to be coming true.
Symptoms (pre MP, current—when having IP)
Brain-Fog 8 4
Fatigue 5 6
Joint Pain 2 8
Tinnitus 5 7
Anxiety 4 2
Food Sensitivities 7 haven’t tested these
Might be worth noting that my food sensitivities are to Gluten, all Dairy products, eggs, numerous types of beans, the eating of which gives me severe brain-fog and fatigue.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Wed Jan 9th, 2008 21:11 |
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Based on your report, you increased mino to 50mg appropriately. It's fine to stay at 50mg longer. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the low enough/high enough dose level of minocycline that works for you is part of the experience gained throughout the MP journey. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
Keep up the good work........
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YoKoMo
Member in Phase 3
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Posted: Wed Jan 9th, 2008 23:08 |
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I've read so much of the "how to identify IP" section, but did not read that much on the neurological immunopathology. I guess I just lumped all that into "brain-fog". For the sake of others, I've had so many of those symptoms (before starting MP), including these:
Sleeping:
- Stars and fireworks hallucinations in my sleep
- Wild, irrational dreams (like some sort of drug overdose)
- Sensation of falling out of the back of my bed.
- Over the years I found that if I took 2 Benadryl each night I could reduce these symptoms (which makes sense now).
Waking
- Can't find or organize anything
- Lost train of thought
- Cannot remember anyone's name
- Miss most appointments
- Feels like a nerf-ball is stuck in my head
- Anger, anxiety, sadness, feeling fatalistic, frustration
- Inability to think ahead (it's what keeps us going you know)
- I would walk down a hall and just stop and sit down with no inclination to continue doing anything.
- Cannot remember the emails I sent the previous day.
- Vertigo
Noted
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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YoKoMo
Member in Phase 3
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Posted: Sun Jan 20th, 2008 08:48 |
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MP meds:
Olmesartan 40mg/q6h, 12/14/07 Minocycline 75mg/q48h
Very liitle IP @50mg Minocycline so I moved up to 75mg yesterday.
Non-MP meds: none
Natural light exposure:
I hr min/day outside fully covered except parts of face. + NoIR
Recent Symptoms/IP:
Lightheaded when rising up.
Occasional Dizziness
Body aches
Light sensitivity medium.
Hands occasionally fall asleep.
Occasional brain fog
General muscle weakness
Comments
I've had pretty classic responses to Benicar (felt great) and then to minocyclene (strong IP about times at 25, then strong IP a couple times at 50) but for the last four doses @ 50 I've had very little IP--if any. I'm going up to 75mg/48 hrs. Per my reading this seems a pretty quick ramp up. It's just over a month and I'm up to 75mg Minocyclene. Is this within the bands of normal, or should I be concerned that I'm doing something wrong?
Thanks for your feedback!
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Mon Jan 21st, 2008 22:35 |
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Thanks for letting us know you are doing well with mino.... Some folks are able to progress through phase one quickly if mino alone doesn't target many bacteria or their 25-D is still high enough to be immunosuppressive. Yours is still higher than the recommended therapeutic level of 12ng/ml.
In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit.
You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Let us know how it goes...........
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YoKoMo
Member in Phase 3
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Posted: Tue Jan 29th, 2008 11:12 |
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MP meds:
Olmesartan 40mg/q6h, Minocycline 75mg/q48h and sometimes q72h
Non-MP meds: none
Natural light exposure:
I hr day outside fully covered except parts of face. + NoIR
Recent Symptoms/IP:
Lightheaded when rising up.
Occasional Dizziness
Shortness of breath for brief periods
Lots of body aches
Light sensitivity low
Occasional brain fog
General muscle weakness
Comments
I'm still not getting the level of IP I had when I started. The 25mg phase had the strongest IP. Now at 75mg the IP is not strong--mostly just body aches.
Hot showers alleviate the body aches. Is it OK to take hot showers?
I should get latest results on D25 levels this week.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Tue Jan 29th, 2008 18:30 |
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| Hot showers are fine if they don't provoke intolerable symptoms.
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YoKoMo
Member in Phase 3
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Posted: Tue Jan 29th, 2008 21:55 |
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My D25 test came back at 14.
MP meds:
Olmesartan 40mg/q6h, Minocycline 75mg/q48h and sometimes I let this go out to q60h--seems the right time for me.
Non-MP meds: none
Natural light exposure:
I hr day outside fully covered except parts of face. + NoIR
Recent Symptoms/IP:
4 Lightheaded when rising up.
3 Occasional Dizziness
2 Shortness of breath for brief periods
6 Lots of body aches
7 Lower and mid back ache
2 Light sensitivity low
5 Occasional brain fog (which is bad when it happens)
6 Pessimitic mood swings (during brain-fog only)
4 General muscle weakness
6 Tinnitus (higher that usual recently)
Comments
Having I've read through a lot of information on this website, I'm not all too suprised that I'm moving reasonably quickly through mino (up to 75mg in a month). My biggest problems over the last 7 years have been brain fog and numerous other problems in the brain--physical and mental. Fatigue only started to get bad in the last three years (which was what led me to this protocol.)
Perhaps, as some of the literature says, the phase II antibiotics will address more of the bacteria in the CNS.
My optimism continues.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Wed Jan 30th, 2008 20:48 |
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Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Congrats on the low 25-D.....
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YoKoMo
Member in Phase 3
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Posted: Sun Feb 3rd, 2008 22:55 |
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I think I should be taking a calcium supplement, since my food sensitivities prevent me from getting it in any significant quantities through food.
I have a calcium supplement (Thorna) that also has Malic Acid. Is that OK to take?
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Sun Feb 3rd, 2008 23:29 |
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Please see Do I need to take a calcium supplement?
Malic acid is touted to help calcium be absorbed into the bones. It's best if you can find a source of pure calcium.
This article on calcium contains information on the types of dietary calcium supplements. When you decide what form of calcium you want to take, you can do an Internet search for brandnames without vitamin D. One brand is Solgar Chelated calcium available from NEEDS (http://www.needs.com 800-634-1380) and other online sources but you may find them at health food stores.
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YoKoMo
Member in Phase 3
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Posted: Wed Feb 6th, 2008 21:59 |
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My health care provider filled two months worth of Benicar, but now they are rejecting my claims, saying I need to appeal the dosage levels. I'm filing an appeal and have the document you have provided for CFS signed by my physician. In that document it says this:
"FDA Guidelines allow this dosing..."
I want to provide the actual document in which the FDA says that it is OK to take Benicar at these levels. I read a lot of documents at this site:
http://www.fda.gov/cder/foi/nda/2002/21-286_Benicar.htm
but I could not find anything on maximum dosages approved by the FDA. Could you help me find that?
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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Foundation Staff
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Posted: Thu Feb 7th, 2008 06:16 |
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See the second post in in Benicar-Basic Information...Evidence that taking Benicar at the MP recommended doses is safe.
You do not have to prove to your insurer that Benicar is safe at any dose. If your doctor tells them that, they should be obligated to approve payment. Doctors practice medicine not insurance companies.....
Good luck...............
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YoKoMo
Member in Phase 3
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Posted: Fri May 23rd, 2008 22:44 |
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This is just a brief update on my progress in the Marshall Protocol. I usually post in the Phase II forum, but I know that is closed to those who have not advanced to that stage. So here is my brief update.
At over five months into the program, I'm doing great. I've had some high points where I felt better than I've felt in decades (literally). And I've had my individual days of working through immunopathology. Avoiding light can be an irritating bother, but it does get easier as it becomes a part of my life--albeit temporary. I look forward to getting through the summer, with it's long, warm sunny days. My skin is still very sensitive to light (e.g. it creates 1,25D in a hurry) so I go out very little, and remain well covered when going out. I work inside so I'm fortunate there. And my eyes are less sensitive to light now.
The great part is that my brain-fog seldom bothers me. Where it used to be with me six weeks on, maybe 3 days off and quite disabling, it now only noticeably bothers me once a week, and that for a few hours--sometimes a whole day. When sick I could never find the words I needed, and I could only remember two letters or numbers in a row if trying to remember a phone number or code. Now I can typically remember six to ten. A phone number is trivial. I can actually store new numbers (like my long library card number) in my head and it stays there.
My self-confidence, dignity and hope are rising fast--like rebuilding a ruined building. Also my general bodily health is improving. My endurance is vastly improved. I require only 6 to 8 hrs sleep, where before I was sleeping 8-9 and napping exhausted all day. Humor is starting to return. I'm writing again, and my kids are seeing a "new" side of me they hardly new, since my health (and mind) left about 8 years ago when they were very young.
This doesn't really describe the transition from hopelessness to hope, but its a small effort. Oh the joys of returning to the land of the living.
Amy Proal (one of the numerous MP superheros) provides a lengthy explanation of the disease and the treatement at http://bacteriality.com/2008/05/07/mpintro/ . This presentation is so very good.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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YoKoMo
Member in Phase 3
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Posted: Fri Dec 12th, 2008 13:26 |
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(one year into protocol)
Phase 3
Phase 3 meds
Beni 40mg q5hr
Palliative Meds
None
Light Exposure
1 hr commuting to work--dark on the way home. In meetings I've begun to take my NOIRs off when I speak for short periods (< minute). When presenting I leave them on since the duration would be too long.
Symptoms
Comments
I've felt very good this last week. Very little IP, and times of feeling good felt "well"; I simply felt great. Then the stomach flu passed through our house. Adults were sick for between 3 and 5 days. I however was sick for one day and felt great the day after. This is not the first time this has happened when on the MP, where I've recovered from a virus way faster than usual.
January 09
Phase 3 meds
Beni 40mg q6hr
Palliative Meds
None
Light Exposure
45 minutes/day covered + noirs.
Symptoms
--Tinnitus (5)
--Insomnia (4) --several nights couldn't sleep, sleeping poorly as of late.
--Coughing (2) -- haven't had the IP type cough in a long time
Comments
Feeling better and better when not herxing significantly, and not herxing too badly lately. Health seems to be levelling out.
I started exercising again, albeit very lightly. I've always stayed in pretty good shape (even active when with CFS until around 2007), so this is a nice step.
I caught myself actually bounding down stairs the other day and stopped to wonder how many years it has been since I last felt like doing that--at least 5 years, maybe more.
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CFS food sensitivities arthralgia 125D37 NoIRs 1hr lite/day covered up Ph1 Dec07 Ph2 Feb08 25D9 Mar08, 25D6 Aug08, 25D6 Oct09
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