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natalie17
Advocate
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Posted: Tue May 20th, 2008 11:16 |
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Hi LsD,
In reference to a phase 1 member asking the same question about taking pancreatin, Meg Mangin R.N. recently responded;
"You may continue this supplement if it is effective at resolving an intolerable symptom."
The thread can be found here. The quote is about half way down the page.
See the Checklist: basic links for MP for further info.
Definitely post if you have any further questions, you sound very well prepared.
All the best,
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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suecat
Member
| Joined: | Tue Feb 5th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 51 |
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Posted: Tue May 20th, 2008 12:51 |
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Hey LsD,
Glad you are right at the threshold!! We will be pretty close as I'm just a month into the protocol.
We may be making a move as my husband's position is being transferred to Austin. Ugh! That will be tricky with my current health status! And then i'll have to locate another doc.
I'm blessed to be on the MP.
____________________
FM/CFS, PH1 April08, ,25D-55,Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 492 |
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Posted: Tue May 20th, 2008 17:07 |
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Lugubrious D,
I'm glad you are getting your D tests done correctly. While you are waiting, you may want to re-read or look at:
D-metabolites tests
What do my lab tests mean?
Good for you for insisting on getting the 1,25D done correctly. It isn't necessary to test it often, but it is helpful before anyone starts the MP.
Did you get a chance to read about the new application process? You will want to be familiar with those details as you move forward.
When people post their study results, it is required to list any medications, OTC, and supplements. Related questions will be answered best for each unique situation by nurse moderators on the study site.
Best to you Lugubrious--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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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 47 |
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Posted: Sun Jun 8th, 2008 09:55 |
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Hi Guys,
Long Time No Post, Huh?
Quest Diagnostics is dragging their butt with my 1.25 results.
I did get the Benicar and I've been ramping up my dose slowly. I should be at the theraputic dose of Q 6 hr tomorrow.
So far no problems. The Benicar is actually relaxing for me, go figure?
My 25 D OH TOTAL was low, 15 L
My Endo told me that the 25 D is related to sunlight exposure, which I've been limiting.
I also seem to have finally made some headway with Medco which I'll post over on the Marshall Protocol Webpage.
So far so good. I also have my Minocycline, so I'm pretty much on course for Phase One. NoIRs are on, got the Ketaconazole, though proably wont need it. I even got some refrigerated Asidofolus 2boot! 
Guess one of you moderators should change my Post's Description! 
-LsDLast edited on Sun Jun 8th, 2008 09:59 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
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 47 |
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Posted: Mon Jun 9th, 2008 11:52 |
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Oh, I also have a question about cold pressed Hempseed oil.
It has Omega 3's and 6's and isn't fish oil.
It's also not Flaxseed. I used to add a teaspoon to my Oatmeal but stopped since I started the Benicar.
Is Hempseed oil a no go item? ( probably right? )
-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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natalie17
Advocate
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Posted: Mon Jun 9th, 2008 11:58 |
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"Hemp oil contains a small amount of vitamin D"
See Oils.
Personally I'd continue not taking it.
Natalie 
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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Dr Trevor Marshall
Research Staff
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Posted: Mon Jun 9th, 2008 11:59 |
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Please understand that your body needs only the MP meds to recover, and that your diet should be as plain as possible, avoiding anything "pressed" or "concentrated" or whatever. Unless you know EXACTLY what is in hempseed, and I certainly don't, then there is no way we can tell you what it does in your body. We can, however, tell you that the hundreds of folk who have gone before you have needed no vitamins or supplements, and when they have been using unusual stuff, they have usually been very slow to recover.
You might like to look over http://mp-recipes.com/mp_recipes.html
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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 47 |
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Posted: Tue Jun 10th, 2008 01:06 |
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Thank You Dr. Marshall,
Consider it stopped!
I just got my 1.25D test results back from the lab.
Lab - Quest Diagnostics - 1.25 was frozen
1.25 - Dihydroxy 54 pg/mL - Drawn 5/22/08 - report 6/08/08
---25 - Hydroxy - 15 ng/mL - Drawn 5/05/08 - report 5/14/08
I began some light reduction when the 25D was drawn.
Was more thorough about light exposure when 1.25 was drawn.
I began light reduction around 5/05/08.
I began aggressively patrolling my foods around 5/5/08.
I have been taking .125 levothyroxine for Thyroidosis.
I have been taking Pancreatin digestive enzymes with evening meals.
No immuno-supressants.
I believe I was not taking the hempseed oil until after both blood samples were drawn. No fish oil.
NO benicar was taken during either test.
NO ARB or ACE inhibitors were taken.
I hope this is posted correctly.
-LsDLast edited on Tue Jun 10th, 2008 02:40 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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natalie17
Advocate
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Posted: Tue Jun 10th, 2008 01:18 |
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LsD,
Please see How to post your D-metabolites tests results .
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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Lugubrious D
Member
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Posted: Tue Jun 10th, 2008 06:49 |
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Lab - Quest Diagnostics - 1.25 was frozen
1.25 - Dihydroxy 54 pg/mL - Drawn 5/22/08 - report 6/08/08
---25 - Hydroxy - 15 ng/mL - Drawn 5/05/08 - report 5/14/08
I began some light reduction when the 25D was drawn.
Was more thorough about light exposure when 1.25 was drawn.
I began light reduction around 5/05/08.
I began aggressively patrolling my foods around 5/5/08.
I have been taking .125 levothyroxine for Thyroidosis.
I have been taking Pancreatin digestive enzymes with evening meals. (I can stop this, I was taking this under the advise of my prescribing MD and was told by an advocate it was ok. no real biggie.)
No immuno-supressants.
No fish oil. I was taking a daily teaspoon of hempseed oil but this was after both blood samples were drawn. I've owned the bottle for about two weeks and even then, it wasn't every day. I stopped when I started the Benicar.
NO benicar was taken during either test.
NO ARB or ACE inhibitors were taken.
I hope this is posted correctly.
-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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P.Bear R.N.
Research Staff
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Posted: Tue Jun 10th, 2008 19:52 |
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Hi Lugubrious D,
Your 1,25-D is elevated at 54pg/ml (the population average is 25-29 pg/ml). It is 2.63 sigma high and based on population studies, 99.55% of the population would be expected to have a lower number.
Your 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.
Your 25-D of 15ng/ml is a bit low for someone who has not been diligently avoiding ALL Vitamin D in their diet and/or supplements. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
The D ratio is 3.6. Any elevation above 2 suggests Th1 inflammation and that the Marshall Protocol (MP) is the correct treatment.
Your D-tests, diagnosis and symptoms indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
Most supplements and many medications must be avoided on the MP.
Our clinical study is temporarily closed to enrollment. As vacancies occur, we will admit subjects based on an application. To obtain an application forum, please send an email to marshallprotocol2@yahoo.com with 'request MP application' in the subject line.
best, P.B.
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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Tue Jun 10th, 2008 21:12 |
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Hi P.Bear,
Thank you so much for your reply. - I know you guys are inundated.
I've been a member of both your websites since April. I joined because of the hope it offered.
I've fought so hard to find a doctor. I went and got the blood tests done. I fought to get the meds imported from Canada when my insurance refused me. I ordered the NoIR glasses. I've turned my home into a light tight sarcophagus and I've restricted my diet. I live alone on disability and was really counting on participating on your websites while going through these Herxes over the next year to help me get through what is amounting to a pretty horrid lifestyle change.
Now, just when I've begun taking the Benicar, it feels like I'm being turned away by the group that encouraged me to seek help, especially when my blood tests say I'm infected.
During the early stages of this process you guys are like my life line.
Please consider this when reviewing my application.
I'll gladly help out any way I can. I've done so in small ways already by screening out the non-participating MP doctors in my area for your nurses and posting all the data I've accumulated regarding Medco's insurance practices.
I really can't go through all this stuff alone.
-LsDLast edited on Tue Jun 10th, 2008 21:37 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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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 123 |
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Posted: Tue Jun 10th, 2008 23:39 |
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LD,
Now, just when I've begun taking the Benicar, it feels like I'm being turned away by the group that encouraged me to seek help, especially when my blood tests say I'm infected.
One way or the other, you must have a doctor, and that's where most of the medical help needs to come from. The info on the MP site is still there, and we're still around to help you get the information you need. It sounds like you have a Doc, and that (in my opinion) is the single biggest hurdle along the way.
How you can help now is getting your doc to make use of the MP site, so he or she is educated about how to manage an MP patient -- which for a large part is helping the MP patient to self-manage the herx and the rest of the process.
We're still here at CureMyTh1 to offer our experience, we just can't offer direct medical advice.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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suecat
Member
| Joined: | Tue Feb 5th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 51 |
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Posted: Wed Jun 11th, 2008 02:17 |
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LsD,
I'm sure it's a just a matter of time til they will accept you for membership.
Hang in there, you've got things in order it will happen,
we are in this together there is just some reorganization taking place as far as I
understand!!
Also thanks for the info on medco!
sue
____________________
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: Wed Jun 11th, 2008 09:21 |
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Ok. Thanks guys.
My sleep deprivation and ACTH/Cortisol levels are making me a wreck phsically and cognitively. There's a reason why its called Dis-Ease.
After my posting on Medco, both my insurance and physician had to phone them yet again, and my physician's assistant is phoning them again tomorrow. What they put people through who are already ill is so cruel.
I unfortunately have to meter my MD visits due to the out of pocket expenses and lack of insurance coverage, which I still have to pay for, regardless of their lack of financial assistance for my MD. Great business model there.
I don't think I'm seeing my MD again until I near the end of Phase One, approximately 3 months hence.
Thank you for all your replies. I'm living in what seems at times like a sunlightless dungeon. It helps to know there is a place I can ask questions.
I don't know how a fogged wreck can help out, but if you think of anything else, let me know.
-LsDLast edited on Wed Jun 11th, 2008 09:33 by Lugubrious D
____________________
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 Jun 12th, 2008 09:59 |
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Hey guys,
So far the Benicar is ok. I'm wiped out even more than usual,
and body achie but ok.
Do you have the links handy for the best material to read up on Minocycline and the Herxing? That's coming around the corner for me and I'd like to be as up to speed as possible.
-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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natalie17
Advocate
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Posted: Thu Jun 12th, 2008 10:25 |
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Hi LsD,
Immunopathology Tutorial
How to Identify immunopathology
How To Manage Immunopathology
Also,
How long should I stay on Benicar? Why don't I feel better? When should I start minocycline?
What should I know about Minocycline?
Why do we take minocycline only every other day? Why do I feel worse on the second day?
All the best,
Natalie
____________________
Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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Lugubrious D
Member
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Posted: Sat Jun 14th, 2008 12:48 |
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So far so good.
The .25 minocycline wiped me out about an hour or two after I took it.
I guess that's good because it's finding something to fight.
There was some minor rapid heart beats when I began the Benicar but nothing too weird.
Your site warned this might happen. I'll mention it to my MD next visit.
Q: Where does TH1 infection come from?
How do you prevent re-infection after completing the MP if you don't know what caused it in the first place?
( I have a root canal tooth. I've read about focal infections. The tooth feels fine and I read in the MP site that Belinda had nearly all her teeth root canaled and is doing fine.
It might have nothing to do with it, then again, it might be pumping bacteria into my bloodstream. )
Any opinions?
-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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Julia
Advocate
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Posted: Sat Jun 14th, 2008 18:51 |
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LugD,
Please see:
What is the basic definition of Th1 inflammation?
Can reinfection occur once we are healed?
Dental Problems
Julia 
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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suecat
Member
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| Location: | Dallas, Texas USA |
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Posted: Mon Jun 16th, 2008 14:39 |
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Hi Lsd,(everytime I write your name I think of acid)
I'll share some about my teeth experience, root canal but I'm whipped and need to rest now...but yes mouth infection/ leaking bacteria from tooth is more common than is know I think...it was/is in my case!!!!
sue
____________________
FM/CFS, PH1 April08, ,25D-55,Cal/mag, guaifenisen, gabapentin, otc sleepaid noIRs. coverup, sunscreen
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