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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Thu Apr 17th, 2008 06:36 |
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Hi guys,
Apologies to anyone I might have bugged inadvertently.
I'm still settling in and learning the proper posting etiquette.
I'm attempting to gather information in order to help convince my internist of the MP's merit.
I did dig around first on the forums, but didn't find anything solid, so I'll ask my first question:
Are their any patient testimonials showing the MP helped restore/raise Testosterone levels back to normal in male sufferers of Th1/CFS? - or are Test levels not necessarily a correlative symptom of Th1 infection?
I know the Guide to Hormones information page mentions why you shouldn't take steroid supplements of any kind because they affect the bodies ability to fight infection. I'm on board even if my endo keeps pushing for steroids.
I easily found MP success tales regarding fatigue, thyroid normalization, brain fog, depression, psoriasis, all vastly improved, but I didn't find a thread discussing a MP alum who's testosterone levels achieved normalization/elevation.
Are there any?
Thanx in advance guys.
LsD
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Ralph
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| Joined: | Thu Oct 18th, 2007 |
| Location: | Sydney, Australia |
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Posted: Thu Apr 17th, 2008 07:02 |
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LsD,
I'm currently in PHIII recovering from Sarc. Each and every one of us recovering have to deal with all types of IP's. We are all different. In my case I was struck with a extreme low Libido for nearly 9 months. Whilst my testosterone was low when measured ,it was much lower than previous prior to starting the MP. Today I can't say I am 100%, but I can at least say I am at 90-95% and its been rare that I fall back to those bad old days. My Thyroid functions have also shown up to be eratic. This is normal as my hormonal home-estisis is trying to get back to normal. All in time.
Its my opinion that as I progressed and killed the bacteria my condition improved in this department and many more, including being able to go out. If you do start the MP you will soon learn how the MP works and how you can manage your symptoms. No one will state that our recovery will be easy but, if you want to stop the decline then you have come to the right place.
Be patient and positve and if you can stay away from those steroids.
Ralph
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Sarc / MP PH III, doing well,IP's Manageable,Less reliant Noirs,Vit D under 10,1,25 between 30-40.
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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Thu Apr 17th, 2008 18:33 |
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Thanx Ralph,
That's what I needed to hear.
My next question has to do with sunlight and it's relation to Vitamin D levels which affect the immune system.
A brief list of my symptoms are: Thyroidosis, Chroinic Fatigue never alieviated by rest, Brain Fog, Insomnia, disturbed sleep, Low Testosterone, Psoriasis, elevated Sed rate and SGOT, plus crummy cholesterol. Bouts of anxiety and depression being the net result. Joy. 
What's strangest is: I wake sick. I am horrid through the day. Yet after the sun sets, during nightfall, my symptoms begin to lessen, and by late evening I tend to function much better.
Being in California, the sunlight exposure is strong, even indoors. I not familiar with the sunlight/Vitamin D reaction and if it's build-up and fall-off are that immediate. Is this behavior pattern common?
Can this vampyric nature of feeling better after the sun sets possibly relate at all to this sunlight/vitamin D reaction?
-or is this just insomnia/sleep deprivation that slowly works it's way out of my system after 8-12 hours.
LsD:
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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markt9452
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Posted: Thu Apr 17th, 2008 19:34 |
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Your experience and symptoms sound quite a bit like mine LD.
I would frequently awake more tired than when I went to sleep and it would often take me hours to wake up.
I would feel progressivley better as the sun went down and peak energy would usually occur late at night. Usually just before bedtime and this made getting to sleep really hard.
I looked for a pattern with my symptoms but I never correlated the symptoms to my exposure to sunlight. Until I found the MP that is - and than it all made sense.
The MP also helped explain the massive increase in symptoms that were happening to me every Fall when sunlight exposure was reduced.
Light Sensitivity Basic information - there are a lot of great links here LD.
http://www.marshallprotocol.com/forum2/10815.html
Your symptoms and your sunlight issues seem pretty typical for Th1 inflammation IMO.
You might want to get your D metabolites tested to get a clearer picture.
Vitamin D metabolite tests - basic info.
http://www.marshallprotocol.com/forum2/366.html
Mark
Last edited on Thu Apr 17th, 2008 23:49 by markt9452
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Lugubrious D
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Posted: Sun Apr 20th, 2008 06:33 |
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Thanx Mark, You guys are helping immensely.
I managed to find one doctor on the California list who may work out logistically. ( ...only one. )
My new problem is: This MD is 40 miles away, which in California traffic translates to an hour and a half drive at best. ( ...anyone with a list of Los Angeles based MP doctors, please do chime in. The Tarzana Autoimmunity Center doesn't answer their phone. )
My fatigue and brain fog makes long distance daytime driving potentially difficult. I'm currently not charming enough to beg a friend to drive back and forth on a weekday. I'm also too poor for the doctor, the blood tests, and cab fare.
I know, all forms of stimulants are not MP friendly.
I already read coffee is a no-no and I'm aware of the squabbling that the best tea is a weak tea, but driving for a couple of hours without any boost, bugs me due to the inherent daytime fatigue and fogginess. I couldn't imagine getting to this doctor on my own if I was Herxing.
While on the MP, is a one day binge, due to an emergency ( like assisting you to get to your doctor ) a deal breaker healing wise? ( my current guesstimate - maybe. )
I don't have family to help with travel, so what else can I do. No trains run near their office. Will coffee one day a month completely bungle the therapy?
This doctor is my only hope right now.
If all goes well, unless I can find someone closer, I'll be driving down to this MD, get my blood tested for 25 - Hydroxy Vitamin D and 1,25- Dihydroxy Vit D. and see if this specific inflammation is present, which I'm pretty confident - is.
-LsDLast edited on Sun Apr 20th, 2008 09:21 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Knochen
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Posted: Sun Apr 20th, 2008 13:09 |
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I know, all forms of stimulants are not MP friendly.
It's not the caffeine in coffee that is the problem, it's the chlorogenic acid, so if you want to take straight caffeine in pill form to get you through those days, it's OK. Just check the other ingredients to be sure it hasn't been enhanced with 'extra" things. I belive that No-Doz is just 200mg caffeine.
Needing to travel long distances is a pain, but it's doable. Be sure to cover up very well and put sunscreen on all exposed skin. Put on the air conditioning so you don't overheat. (If you oppose the use of AC on moral grounds, consider it a medical appliance in this case. ) Don't forget your Noirs!
If you can't afford the more expensive D1,25 test, you might ask the doc for the Rx so you can run a therapeutic probe instead. The D25 test is much less expensive and you will want to have a base number so you can track your compliance with diet etc.
Congrats on finding a doc.
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suecat
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| Joined: | Tue Feb 5th, 2008 |
| Location: | Dallas, Texas USA |
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Posted: Sun Apr 20th, 2008 19:25 |
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Hi L,
Finding a doctor is the most difficult thing. It's a challenge but something that is essential to have. Do what you have to, keep putting out the feelers, try to find folks in your area on the mP that might have a doc that would take you on. Go to the profiles and see who has posted alot in your area and then you can tell if that person has been on the protocol on an ongioing basis. Another possiblity is to get the doc's list for the Road Back Protocol as these doctors might be more open to the MP.
Just some thoughts
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FM/CFS, PH1 April08, ,25D-55,Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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Lugubrious D
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Posted: Tue Apr 22nd, 2008 22:16 |
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Well, it seems the MD's assistant who said they treat with the MP was contradicted by another assistant.
This one said the MD has their own protocol for treatment. I know that anyone mixing treatment regiments is not preferred.
My internist chirped that the MP will do no harm but is probably a waste of money. He is an HMO doctor who is trying to contain costs and will not help me.
I went through every MD on the list forwarded to me from http://www.marshallprotocol.com for California.
They're all either too far, no longer treating with the MP or not taking new patients.
( a few even had questionable backgrounds and/or were not even MDs )
I put in a request on this site for an MD list. I hope it's not the same as the one I already have.
It seems I'm back at square one.
- Sigh - LsD
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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suecat
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Posted: Tue Apr 22nd, 2008 23:15 |
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Hi L,
Don't give up hope! I went to 4 docs personally with rejections and/or hee-hawing abuut regarding the MP and sent out informtion to at least another 4 or 5. i finally found a guy that lived in my area on the MP, his doc was not interested in doing the MP for anybody else, but gave us a name of a Family Doc that might be interested.
She agreed though I must say it's such a new concept that she certainly wasn't gun-ho but none the less she was agreeable! She was downtown in the thriving metropolis..maybe think research hospital as they might be more open.
I wrote a personally ltr with links to phase 1, and miscl other stuff about the mp and either e-mailed or faxed to possible docs. Then I called or they called me (mostly I did the calling) I actually did get another doc that was interested but he was totally a non-insurance doc and it was going to be pricey but he was at least willing to think outside the box abit.
Another doc that was conisdering this was an osteopath. They think differently because they get training in the body and how it functions mechanically kinda like a union of a chiropracter and m.d. This particular one had knowledge of lymes and I think that is what peaked her interest...but you will find alot of the lyme literate docs want to do their own protocol. but she was not just lyme focused.
Keep the faith!
sue
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FM/CFS, PH1 April08, ,25D-55,Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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suecat
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Posted: Tue Apr 22nd, 2008 23:19 |
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One more thought, I came across a alternative doc that did Microscopy (looking at live blood through high powered microscrop) that knew of Cell Wall deficient bacteria.
He gave me a suggestion of an M.D. in the local area that might be open to the MP.
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FM/CFS, PH1 April08, ,25D-55,Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Wed Apr 23rd, 2008 00:23 |
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Thanx Suecat,
I'm passing on the names of the doctors whom for whatever reason did not work out for me MP wise on to the site Admins, along with the various reasons why.
At least others will benefit from my chasing.
-LsD
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Julia
Advocate
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Posted: Wed Apr 23rd, 2008 13:04 |
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Hi LsD,
I'm sorry to hear of your struggles to find a doctor, but many of us have known this frustration. Have you studied Suggestions To Get Your Doctor On Board With the MP? See also Folder of MP information for your doctor.
Don't give up!
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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Lugubrious D
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Posted: Wed Apr 23rd, 2008 20:11 |
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Hi Julia,
Yeah, I gave my internist the entire packet and passed another to my Endo. I did read those links before meeting with them. Unfortunately it didn't help.
My favorite tip (paraphrased)
- You may have trouble pitching the MP to specialists. They may tend to feel they are already experts.
Even though I'm fogged most of the day, I try to be as thorough as I can. I'll re-read those links.
-LsDLast edited on Thu Apr 24th, 2008 06:04 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Lugubrious D
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Posted: Thu Apr 24th, 2008 18:43 |
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Good news,
A friend acting as my health advocate found me an MP doctor. I have an appointment next Thursday.
I ordered my NoIRs and have begun blacking out my apartment windows. What is truly interesting, is that my bedroom was nearly all window with harsh morning exposure. I was waking up sick with a headache everyday, thinking it's fault was caused solely by sleep apnea.
The windows in my bedroom have been blacked for two days now. My morning sickness and headache, while not gone, has diminished in intensity. I was bathing in sunlight every morning without realizing it was effecting me so drastically. I am definitely Photo-sensitive.
So, wish me luck. There's still a long way to go. Blood tests, medicine prescriptions to get filled. But it seems barring anything unforeseen, I'm headed into Phase 1.
Thanx for all your feedback guys.
Wish me luck.
-LsD
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Knochen
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Posted: Thu Apr 24th, 2008 19:33 |
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Good job!
Glad you have already discovered something about your sun sensitivity, and hope that you continue to get some relief along those lines as you continue to get ready. Be sure to get your house, clothes, and "life" in order as best you can so you can minimize your outings during your first few weeks. That way you'll know what's herx and what's sun. Sometimes it can be hard to tell them apart!
If you need a starting point of MP safe food, I have a very modest site set up at
http://www.geocities.com/knochen_mp/index.htm
Let us know how it goes with the doc, and be sure to post your labs on the other board once you have them.
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Lugubrious D
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Posted: Tue May 6th, 2008 22:30 |
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Hey Guys,
Update: I had my first session with my MP Doctor. Blood levels by Quest Diagnostics are drawn, I have an Rx for Benicar, but my insurance totally balked.
The out of pocket expense at Wallgreens is $324 dollars for a one month supply of Benicar. My isurance would only cover one pill a day for 30 days.
My Dr is writing a letter of appeal to my insurance company as I'm typing this.
Any opinions on what to do now? I remember reading the files about securing Benicar two weeks ago but I'm so fogged right now I can't think let alone research right now.
Help?
-LsD
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Wed May 7th, 2008 01:06 |
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Lugubrious D,
You might find helpful details here:
BENICAR-Basic Information (click here)
Where to purchase Benicar for self pay members
How can I obtain my insurance benefit for the full dose of Benicar?
Best to you Lugubrious D--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Lugubrious D
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Posted: Fri May 9th, 2008 00:48 |
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Thanx JR,
I finally was able (thank g-d) to get around to sorting through some of what's going on
with filling Benicar Rx's.
1. I have to order from Canada, while
2. I begin battling with Medco for Rx coverage.
I saw a thread on http://www.marshallprotocol.com/forum11/399.html
specifically about Medco that is extremely discouraging.
I may post a question over there as well.
I do have a side query, (a semi-non-sequitor)
I recently heard Dr. John Gray (of the "Mars and Venus" series) speak about the benefits of chromium to rebuild burned out Dopamine receptors in pre-parkinson patients, and Mucuna Pruriens ( Velvet bean )
to help boost Testosterone levels.
I know we're not supposed to use supplements while on the MP, but I feel I have to ask you, those more knowledgeable than me, for the benefit of myself and other beleaguered males on the road to the MP.
A: Chromium is a mineral. Minerals are definitely out?
B: Velvet Beans can be bought as a seed pod like peas.
Are Vegetables that may help hormone levels out?
Celery is supposed to help Testosterone levels and no one would cross celery off an MP diet, right?
I figure it's better to ask than not.
Thanx for the support y'all.
LsDLast edited on Fri May 9th, 2008 00:48 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Fri May 9th, 2008 04:14 |
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Lug,
Get a good idea of Foods to Avoid and eat a well balanced diet.
Skip anything non-MP regularly ingested for motives you've identified, or similar.
Some also enjoy this short list: MP Food Choices Simplified
Lots of veggies are OK to eat. Enjoy some variety, and eat fresh when you can (mmmmm and simple to fix).
Best to you Lug--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Lugubrious D
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Posted: Tue May 20th, 2008 10:26 |
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Hi Guys,
Getting close, The Benicar will be here in two weeks, My MD's lab messed up the 1,25 D test, but the 25D came out surprisingly low. I'll post the results when the retest of the 1,25D comes in. I also got my Minocyline Rx.
Questions:
1. My MD prescribed Pancreatin digestive enzymes (Amylase, Protease, Lipase) because his staff nutritionist said I tested poor on digestion of protiens. Is that ok to take?
2. I have the chart and quick reference pdfs for phase 1. Other than keeping track of Herxing, what should I be doing?
( Just posting here if there are any problems or further questions? )
-LsD
____________________
1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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