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- I have read that you
guys have a new treatment which is sending chronic sarcoidosis into remission. But I
can't find a simple summary anywhere, only complicated details
You can find a copy at http://SarcInfo.com/phase1.pdf
It is in Adobe Acrobat format, and you can dowload a free reader from http://www.adobe.com/products/acrobat/readstep2.html
- If I take 40mg of Benicar every 6-8
hours, my Doctor is worried I
am going to have such a low blood pressure I will be passed out on the
Here is a plot of the drop in blood pressure
versus the daily dosage of Benicar. You can see that there is a
very rapid change at low dosages. There is very little extra decrease in BP
as the dosage increases from the starting 10mg every 8 hours (=30mg
daily). But the curve only becomes very close to a complete
blockade (horizontal line) at dosages around 120-160mg
daily. Benicar "is
safe and well tolerated at doses up to 160
mg/day". The FDA Package Insert
instructs:"Dosage must be individualized."
You might also notice that the total drop in BP,
even at 160mg, is not all that large. It is less than
achieved by the more effective BP drugs (like the Beta Blockers).
Actually, in Sarc patients, the BP varies
considerably (much more than this) as the 1,25-D surges. That is why I advocate
patients monitor their change in BP whenever their symptoms change.
- I live in
[Alaska][Antartica][Greenland] where there is very little sunshine. Do I
have to stay indoors too?
Sarc patients' skin may generate 20 times the amount of D metabolites as healthy
folks, since the bacteria live in the keratinocytes (cells of the skin) and
make them hyper-active. Too much Vit D can even be manufactured in twilight or
at extreme latitudes. Every sarc patient should assume that daylight will
detrimentally affect them. The only way to tell if you are unaffected by your
daily activities is to measure your D metabolites. The hyper-sensitivity
slowly disappears as
the antibiotics kill the bacteria.
- I know that Sarcoidosis
patients have skins which are hypersensitized to sunlight. Does the use of
UV Sunblock creams reduce the amount of Vitamin D we get while
No, UV creams have no effect whatsoever on our body's production of
Vitamin-D metabolites. Neither does lightweight clothing. Even if we totally try to cover all
exposed skin, the light reflecting from the ground into our face and necks
creates too much Vitamin D, over the course of an hour or so. Studies have
shown that exposed skin produces most of its Vit D within 10-20 minutes, and a
sunbathing body will get a dose of about 10,000 IU in that short time. Here
is a study from
Australia and a study from
Spain, both showing that there is
no difference between the D levels of folks whether they use UV block creams
or don't use them. The only way to really effectively cut your D input is to stay
indoors during daylight hours
- If you kill all the bugs, why
might ARBs be useful afterwards? Because
from what I understand, ARBs disrupt the inflammation cycle and if there is
no more inflammation to disrupt, why continue the therapy?
The issue here is whether all the bugs can be killed. At this point it seems
certain they can. Additionally, I now have a pretty good idea of what type of bugs cause
the hyper-inflammation of sarc, and what their mechanism of action actually
is, and so I would expect that eventually there would be no need for ARBs. That
is one of the reasons I have started to muse about a "cure" rather than just
talk about remission - as more and more folks recover with such innocuous
antibiotics (as the tetracyclines) it seems pretty clear that ALL the bugs
can really be killed....
- Because of your genetic sarc predisposition, will you
have to take ARBs for
the rest of your life?
No. The mechanism of action of the bugs is to actually create the
hyper-immune response (see my BMJ letter explaining T-Lymphopenia). As more of us get closer to remission (or cure, or
whatever) the sensitivity to everything drops. No more huge welts from cat
scratches. No more allergies from pollen. It is the bugs that are creating
the hyper-sensitivity, and as they are killed off the body is returning to
- Why does the immune system of sarc patient seems to be in a loop and cannot
get rid of these bugs?
These CWD bacteria have learned to live inside the actual macrophages
(phagocytes) of the immune system. These CWD bacteria fail to be destroyed by the very cells
are supposed to kill them, as they have learnt to live in the
caustic 'cytokine soup' inside a granuloma.
The control of 1,25-D (which regulates the "hospitality" your immune system
extends to these bugs) is the area of genetic predisposition to sarcodiosis, IMO.
- Does it mean that every time the body will be in
presence of these bugs, it will respond in the same fashion. i.e produce
granulomas that take years to clear out?
If the bugs infect you again, or if you allow the remaining ones to get
a grip again, the hypersensitivity will return.
- Why do some people have normal ACE levels and
sarc. Is there an explanation for that?
ACE is an intermediate biochemical. It is a precursor to Angiotensin II. It has
no direct action in the inflammatory cycle other than to cause the release
of quantities of Angiotensin II. I guess that is why it is relatively
insignificant in some folks, depends on your Renin Angiotensin System
activity level. This is explained in our
description of sarc biochemistry at "The Angiotensin Hypothesis" in our "New Treatments
- Why are you guys so
critical of Prednisone?
Prednisone is an excellent drug whenever the immune system needs to be
"turned off" for a short period of time (days or weeks). But when used for
more than a few weeks at a time it causes the following disease processes:
- Doses as small as
20mg for long periods or 60mg for a
month can cause
destruction of the hips and spine (and other joints) with a disease called 'Avascular
- It can cause
Diabetes, which, if poorly treated, may become permanent
- Steroids are a major cause of osteoporosis
- It usually makes the sarcoid inflammation worse by allowing the sarcoid CWD bacteria to
freely multiply in the immunosuppressed patient. When patients try to stop using
steroids, the inflammation is worse
than when they started.
Prepared by Trevor G Marshall, PhD
Last Revised: 26 August 2003
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