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DON
Member in Phase 3
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Posted: Thu Aug 26th, 2004 23:07 |
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Meg, thanks for the assurance and hand hold, I needed that, been bumping into too many walls this week........Don
>Don,
I think you can relax. It sounds like you were very vigilant to ensure that your blood samples would be frozen. It is only Labcorp that have previously said they would freeze samples and then did not.
Meg<
Last edited on Thu Aug 26th, 2004 23:09 by DON
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Admin
Administrator
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Posted: Thu Aug 26th, 2004 23:27 |
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Hi Don:
Good point. I suspect that most people on Quercetin had already begun posting in the non-Q progress report forum.
To those of you who have posted in the Full Protocol forum and have begun to use and post about your experiences with Quercetin, please let me know and I will move your threads to the Full Protocol plus Quercetin progress report forum.
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*We can help you understand chronic disease, but only your physician is licensed to give you medical care *
Always consult your physician before commencing or changing any treatment he/she has prescribed for you
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DON
Member in Phase 3
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Posted: Sun Aug 29th, 2004 23:26 |
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Day 41 on Benicar 4x 40mg, day 32 on Mino, now 100mg every 48h. 135/80 bp-68 hr.
Still no major noticable herx reactions, good sleep, no brain fog, tinnitus still persists, some intermittent cold feet at night.
Friday, first day spent some considerable time outdoors in physical activity, covered up and with NOIR glasses. Experienced same extreme fatigue levels at the end of the day as pre-MP start.
Getting somewhat anxious wondering if MP is having any effect on my infection state since I do not seem to be experiencing any of the very notable reactions that others are going thru.
Guess I can only transition into other abx stages and hope to find the right commbination that my infection will respond to..........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Thu Sep 9th, 2004 06:40 |
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I just received some test results in preparation for the transition from Phase 1 to Phase 2 and was surprised to see a specific test and result for the measurement of Angiotensin II that accompanies the usual ACE testing.
Unfortunately, my test level for this showed an extreme out of range high of;
Angiotensen II.........result= 73...............range=10-50............Quest labs.
Ive looked thru this website and 2 other MP related sites trying to find information or similar test information about Angiotensen II and have drawn a blank.
Is this a new test parameter that doctors are being asked to request that are involved in the MP protocol?
The biggest surprise to me is that I am so high out of range considering that I have been on 40mg Benicar x4 for over 2 months, now, prior to this test result, following the standard protocol restrictions of no Vit.D, no sun exposure, NOIR glasses, etc....
My understanding is that Benicar directly blocks the production of Angiotensen II, so I would expect a very moderate level reading after this period of time on the standard MP dose of Benicar.
Other test results with this batch;
ACE........result=50.................range=9-67...........Quest
25-Hydroxy Vit. D.........result=38.........range=9-54........Quest
1,25-Dihydroxy.............result=insufficient blood quantity draw for testing.....Quest
This leads to my warning about blood draws for the D-Metabolite test panel for Quest labs, aside from making sure that the blood draw facility understands the need for freezing the blood for the "D" tests, also make sure they draw enough blood, 4ml, to cover both "D" tests.
While researching the Angiotensen II testing I ran across a few other Quest patients that have also had to repeat their "D" test blood draws due to lack of sufficient blood quantity to perform the entire panel.
Apparently the quantity instructions for the blood draw personnel are not spelled out very clearly, and only 1 ml is being drawn in some instances, which only covers the first half of the panel.
Make sure it gets frozen and there is at least 4ml for the D testing.
So, off I go again for another blood draw and wait for lab results.........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Sep 9th, 2004 12:39 |
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Don,
Benicar blocks the RECEPTORS (on cells) that allow Angiotensin II to be used by the body.
An ARB actually induces INCREASED production of the hormone itself as your body tries to adjust for the lack of availability of the hormone at its receptors. You will find that serum ACE also rises while an Angiotensin Receptor Blockade is in place.
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Patricia
inactive member
| Joined: | Fri Jul 16th, 2004 |
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Posted: Mon Sep 13th, 2004 21:29 |
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Hi Don,
I had my blood drawn at a Quest lab in a suburb of Orlando, Florida, and they did the same thing with not drawing enough blood to have the 1,25-D test done. So, this seems to be a problem with Quest labs everywhere, not just in your location or mine.
Patricia
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DON
Member in Phase 3
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Posted: Tue Sep 14th, 2004 02:42 |
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Hi Patricia,
Yes, I think yours was one of a handfull that I noticed that experienced this problem.
You can see why it happpens when you compare the blood draw instructions between those listed at the Specialty Lab website (concise and to the point) vs. Quest (jumbled and somewhat confusing for technicians not familiar with the panel).
The real sad part, for me, is that even after the second blood draw I am still not 100 percent confident that the panel will be processed correctly. Too many inconsistencies, factory assembly line processing where not enought attention is being paid to detail.
Well, keep my fingers crossed, and follow the process in case of any hangups...........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Mon Sep 27th, 2004 22:03 |
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I had an unusual situation yesterday where I became pent up with the hybernation in my cave, getting couch sores on the backside, decided to take a night hike to stretch out the muscles and let my whole body breath.
Probably took it too far and came back totally exhausted, couldnt climb another hill if my life depended upon it, dripping sweat-----the whole nine yards.
Just for the heck of it I put the blood pressure monitor on and took a reading while I was cooling down. Wanted to see just how high I spiked the levels.
Much to my surprise my bloodpressure levels had dropped tremendously over my usual average sedate level of= 125/68 bp 69 hr, and now showed a drop to a level of 85/59 bp 100 hr. I measured a couple of times to make sure I was getting correct readings, since this was the opposite of what I was expecting. The readings were repeatable.
Ive always known Ive had an increase in exertional fatigue while taking Benicar and chauked it up to microbe die off.
Now I am wondering are certain increased exertional fatigue levels tied to bloodpressure lowering and the effects of Benicar?...........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Aussie Barb
Member in Phase 3
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Posted: Mon Sep 27th, 2004 22:40 |
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Hi Don 
I am a believer in not overdoing... (because I have always been a maniac MySelf, I know the effects so well you see
anytime is bad enough, but when ill, is most unwise... and on MP we are putting our Bodies (reverence req here ) to Work bigtime.....
so yes I agree that " increased exertional fatigue levels tied to bloodpressure lowering and the effects of Benicar?"
TAKE CARE of Selfs re food, rest, all care, >> anytime but especially while doing MP for best effective success.
best to us all, Barb  (who has almost learnt to take care Herself
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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Posted: Tue Sep 28th, 2004 03:15 |
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DON,
Dr M and his staff have said repeatedly that low bp is a sx of illness, not the cause of feeling bad. I can attest to that. I'm not sure how your low bp tied in with your overexertion scenario, but I doubt that low bp was the cause for the fatigue.
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hodologica
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Posted: Wed Sep 29th, 2004 20:20 |
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| I think (im not certain) that in normals bp usually goes down for some time after significant exertion.
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Male, 23, ill 1 yr plus, slow-onset CFIDS, lyme-equivocal. Not on MP; on conventional LLMD tx. Pelvic pain
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kemsoup
Banned
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Posted: Fri Oct 1st, 2004 06:45 |
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Don,
The post-exertional effects on BP that you are seeing is one of the hallmarks of CFIDS. For a healthy individual, the BP stays up while they are cooling down following exertion. But for PWCs, the BP can drop dramatically during the cool-down giving way to that post-exertional malaise we all know about. I've done this many times so know about the bad feelings following an overextended walk, for example. The BP drops significantly. My guess, that is the majority of what you are experiencing.
I don't know about the effect of Benicar on post-exertional BP specifically, but its effect on BP in general have been discussed extensively on this and the other MP boards.
BW,
Steve 
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Paula Carnes
Guests visiting Phase 1/2/3
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Posted: Fri Oct 1st, 2004 16:51 |
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Steve and all, this is probably getting away from the topic of blood pressure drop, but relates to post exertional fatigue. The problem, as I understand it, is not primarily caused by bp dropping, but by the fact that the mitochondria are unable to function properly. They do not produce aerobic energy. Result: in 3 minutes of exercise you feel like you just completed a marathon. In my opinion this symptom is the heart of what has been labeled chronic fatigue syndrome. It is what put the "fatigue" in the name.
Paula Carnes
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