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dbkiser
Member
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Posted: Mon Oct 13th, 2008 02:34 |
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Briefly list your diagnosis or symptoms. (around 2 lines at the ost).
9+ yrs: ME/CFS,Fibro,IBS,Food Sensitivities, MCS,GERD,HBP,allergic rhinitis,
-The date the blood was drawn: 9/25/08
-Which lab did the tests? CPL
-Was the 1,25-D sample was frozen for shipment? Yes
-How long have you been avoiding foods with vitamin D in them? 9/25/08
-How long have you been avoiding sun/lights? 9/25/08
-List all meds, supplements (both prescription and OTC) you have been taking and why.
Rx's: Cymbalta (depression); Avalide (HBP); Xyrem (sleep); Synthroid (mild hypothyroidism); AcipHex (GERD); Provigil (alertness-diminished brainfog); Nasacort (allergic rhinitis); Valtrex (equivocal HHV-6); Patanol (eye allergies); Celebrex, prn (OA); Boniva (osteopenia); Diflucan for several months recently for Candidiasis; compounded Biest,Prog,Test (menopause-severe hotflashes over 10 years when not on hormones)
OTC's: CoQ10 , E, Fish Oil, Mycelle D-3 2,000 IU/day, NAC, ALA, multi vitamins, Pure LVR and ADR Formulas, Pure K-Mg, Osseoapatite Plus (400 IU of D3), Xymogen Corticare B, NADH, D-Ribose, Probiotics, Amino Acids, CandiBactin AR (post Diflucan)
-When and for how long have you taken prednisone or any other immunosuppressant in any form?
'01 and maybe '02 for very short times, +injection + a few days for severe allergies in '05 or '06
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil?
Many, many years for all but only recently Mycelle D3 2,000 IU/day (6 mos). Endocrinologist found my D was low. (At least for 7+ years, E and Fish Oil Rx'd by my D.O. who dx'd me with CFS/Fibro). I found if I stopped E and fish oil, my joint and fibromyalgia pain, as well as paresthesias, were MUCH worse.
-Were you taking Benicar when the sample was drawn? No
-Were you taking an ARB or or an ACE inhibitor when your blood was drawn?
Yes, Avalide for HBP.
Please add the required signature line
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ME/CFS Fibro 9+ yrs; IBS; OA; MCS; HBP; GERD; 45# wt gn; Ph1 MP 9/27/08; D,25OH 10.3 D,1,25 44, 25mg Mino 10/5; Non MP Rx's Cymbalta, Synthroid, Xyrem, Compounded Biest,Prog, Lasix, Lortab; covered up, home low lux, NoIRs
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ME/CFS/FM 9 yrs;IBS;OA;MCS;HBP;GERD;food sensitivities;Sleep Apnea;Lyme?(No/CDC, yes/Igenex);Insomnia;HHV-6 1:80; 45# wt gn; Ph1 9/27/08; D,25OH 10.3 NG/ML, D,1,25 44 pg/mL, Ph2 11/20/08; Non MP Rx's Cymbalta, Xyrem, Compounded Bi-est, Lasix, Metoprolol 5
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P.Bear R.N.
Research Staff
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Posted: Mon Oct 13th, 2008 07:13 |
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dbkiser,
Your 1,25-D is elevated at 44pg/ml (the population average is 25-29 pg/ml). It is 1.58 sigma high and based on population studies, 94.30% of the population would be expected to have a lower number.
Your 1,25-D is near 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 10.3ng/ml is at a good level to not stop innate immune function. With all your fish oil and D this low number is strong evidence that your 1,25-D may be even higher than that reported, since very high levels of 1,25-D will often cause reduction in 25-D levels. Because 25-D is immunosuppressive, you still need to avoid ALL sources of Vitamin D to keep 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 4.27. 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. Many of your medications need to be stopped or weaned as well as the supplements with help of MP physician. (provigil, nasacort, boniva, valtrex, diflucan, progesterone, testosterone would all compromise your progress as well as the supplements listed. Estrogen dose may need to be reduced. Xyrem would need to be stopped unless absolutely required for narcolepsy.
Our clinical study is closed to enrollment.
best,P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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dbkiser
Member
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Posted: Mon Oct 13th, 2008 21:05 |
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P.Bear,
Thanks for the info. I asked my doc to Rx hormones w/o test. and was trying to wean off all by applying compounded cream at 1/2 gm of 2.5 mg Bi-est and 100 mg progesterone per day. However, I began feeling very hot all the time and had increased night sweats, plus very irritable. How long before natural female hormones adjust on MP? The IP has been tolerable, or I was able to reduce w/ extra Benicar, but I don't think it would tolerable w/ severe hot flashes right now.
I believe all my problems started w/ "traumatic menopause" in '97 after being unexpectedly fired from a job due to jealousy of office manager, who was very good friend of senior partner. My menses just stopped. I was right age, but no precursor signs, like heavier flow, skipping periods, etc. Just stopped! And,then, sleep problems and severe hot flashes. Then, early '99, the "flu" from which I have never recovered.
Provigil -- I took rarely, only when I need to go to doctor and pharmacy, etc. I forgot to mention that I have sleep apnea. W/o Provigil, I cancelled dentist appt. today -- just couldn't do it.
Boniva, Valtrex, Diflucan, Nasacort -- stopped
Xyrem -- I asked doc for Rx for Valium, and he said to continue taking Xyrem instead. I do not fall asleep w/o it and always awaken a few hours later for 2nd dose. He doesn't believe Xyrem will interfere w/ MP. He's been so good about everything else, I have a problem arguing that point w/ him, since he knows my sleep history. Tried EVERYTHING ELSE (Rx and OTC) and nothing else has worked for me. I can't imagine being able to improve w/ NO sleep. I am serious; I will stay up all night long even though I am exhausted. I sure look forward to that problem resolving.
I stopped all supplements except CoQ10,but added back E as it relieved paresthesia in hands when extra Benicar did not. My doc thinks I should continue Nattokinase and 81 mg aspirin because I have had a Right Branch Vein Occlusion (right eye) and am followed by retinal specialist every three months (had laser correction for extra veins that formed). I know what the MP says about supplements, but is this an acceptable exception?
I am eating no or low D. I am homebound at least 80% of time.
Thanks for your comments.
dbkiser
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ME/CFS/FM 9 yrs;IBS;OA;MCS;HBP;GERD;food sensitivities;Sleep Apnea;Lyme?(No/CDC, yes/Igenex);Insomnia;HHV-6 1:80; 45# wt gn; Ph1 9/27/08; D,25OH 10.3 NG/ML, D,1,25 44 pg/mL, Ph2 11/20/08; Non MP Rx's Cymbalta, Xyrem, Compounded Bi-est, Lasix, Metoprolol 5
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P.Bear R.N.
Research Staff
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Posted: Tue Oct 14th, 2008 19:31 |
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dbkiser, You will need to work with your doc on all of this. Some medications may need to be continued even if they are not always optimal for immune system function; but the goal is to reduce what you can and stop as many as are not absolutely required. I might attempt to wean the progesterone down to at least 10mgs a day. The estrogen dose is reasonable and in some woman is adequate to help quite a bit with symptoms. Clearly it does not work for everyone to an acceptable level. The nattokinase and ASA should be continued for now and you monitored by your physicians. The MP will in the longer term improve your paresthesia in your hands. The vitamin E may or may not disrupt progress in nerve healing and MP; and we feel it is best to avoid it.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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dbkiser
Member
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Posted: Thu Oct 16th, 2008 00:21 |
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Thanks, P.Bear--
I went to my doc yesterday, and he told me there is an alternative to taking the Progesterone (protective since I still have uterus). I can have an endometrial "smear" done every six months just to make sure no bad cells show up. I will get a new Rx for Bi-est, only. I'm so glad there was another solution as I want to get the maximum benefit from MP.
I will take your advice on E and stop it for now. Hard to believe I was only on allergy meds, Cellebrex prn and female hormones before ME/CFS.
Thanks for all your effort on behalf of all us sufferers.
Darlene
Noted
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ME/CFS/FM 9 yrs;IBS;OA;MCS;HBP;GERD;food sensitivities;Sleep Apnea;Lyme?(No/CDC, yes/Igenex);Insomnia;HHV-6 1:80; 45# wt gn; Ph1 9/27/08; D,25OH 10.3 NG/ML, D,1,25 44 pg/mL, Ph2 11/20/08; Non MP Rx's Cymbalta, Xyrem, Compounded Bi-est, Lasix, Metoprolol 5
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dbkiser
Member
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Posted: Wed Nov 19th, 2008 04:05 |
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P.Bear, I thought my endocrinologist was only going to test thyroid levels, but she also tested the following:
10/14/2008
D, 25-OH TOTAL 21 ng/mL
D3 14
D2 7
(Quest - in-office)
These results are higher than my previous D tests at CPL, even though I am avoiding light and dietary D. I know that D, 25-OH needs to be below 20, even better below 12. My house is low-lux and I go out very seldomly, covered up and sunblock.
Should I just continue on? I don't know where the add'l D could be coming from. Does it fluctuate? Is the lab the difference? Quest as opposed to CPL?
Thanks for your input.
Darlene
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ME/CFS/FM 9 yrs;IBS;OA;MCS;HBP;GERD;food sensitivities;Sleep Apnea;Lyme?(No/CDC, yes/Igenex);Insomnia;HHV-6 1:80; 45# wt gn; Ph1 9/27/08; D,25OH 10.3 NG/ML, D,1,25 44 pg/mL, Ph2 11/20/08; Non MP Rx's Cymbalta, Xyrem, Compounded Bi-est, Lasix, Metoprolol 5
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P.Bear R.N.
Research Staff
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Posted: Wed Nov 19th, 2008 06:45 |
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Darlene,
Labs can have some variation between them but I would still be very cautious about foods and sunlight. A slightly different level would be no reason to do anything but to be more careful if higher.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 19th, 2008 07:02 |
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Darlene,
Vitamin D2 comes only from food and supplement sources. Vitamin D3 is the animal / human form of the seco-steroid.
Those 7 units of D2 indicate you are ingesting Vitamin D. You will need to figure out the source. See, for example, this discussion:
http://mp-lifestyles.org/forum3/163.html
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dbkiser
Member
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Posted: Sat Nov 22nd, 2008 05:34 |
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Thank you, Dr. Marshall. I had been making some dietary mistakes . Currently, my husband does most of the grocery shopping, and he does the cooking when he is home every other two weeks (works offshore). Occasionally after my doctor appt., I can make it to Whole Foods. I'm going to have to be more careful, as I do not yet feel well enough to bake alternate grain bread (have a problem w/ wheat). I found the chocolate powder you recommended at World Market and look forward to trying it.
Thanks for the dietary site; it is very helpful.
Darlene
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ME/CFS/FM 9 yrs;IBS;OA;MCS;HBP;GERD;food sensitivities;Sleep Apnea;Lyme?(No/CDC, yes/Igenex);Insomnia;HHV-6 1:80; 45# wt gn; Ph1 9/27/08; D,25OH 10.3 NG/ML, D,1,25 44 pg/mL, Ph2 11/20/08; Non MP Rx's Cymbalta, Xyrem, Compounded Bi-est, Lasix, Metoprolol 5
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