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The following is posted verbatim with the permission of the author as a
public service. It was received on 2005-01-27, the author is known to me and
thus I believe is creditable.
Trevor Marshall: Addison´s and ARBs
This Q & A between Trevor Marshall / Steven Carroll, regarding the potential
dangers of using angiotensin II blocker (ARBs) such as benicar, in those that
have weak adrenal function, namely those who lack Cortisol and Aldesterone
production, also known in serious cases as Addison´s disease.
Addison´s disease is a life-threatening situation, and calumniates in what is
referred to as an adrenal crisis. Following 5 such adrenal crisis, and despite
having made my problems clear on the official Marshall Protocol site, (from the
very first crisis), I felt my symptoms were ignored by the senior staff there
who dismissed my symptoms as a herx (Bacteria die off) and following a long
debate I was forced to reframe from posting messages on the official site.
Following these events and now having a confirmed Diagnosis of Addison´s; and
having the hindsight of spending time reading up about the possible connections
between these ARBs and Addison´s, and further from learning about others who
have also described very similar problems to me, who were also treated as I was
on the official MP site, I have decided to go public with my concerns.
Herein follows a conversation (slightly edited to exclude the sometimes
heated nature of the debate).
SC: My tests results for ACTH arrived today and
were 10 times The lower level. AMAZINGLY my light sensitivity has disappeared
with Cortisone supplementation IMMEDIATELY. As Pä here also mentioned the same
happened to her upon cortisone supplementation.
From what I am learning, one of the most common
indicators of Addison's Is that the body obtains a sun tan (strange that). What
with this being a very common symptom of Addison's and finding that at least two
people here who are CONFIRMED to suffer with ether Addison's or Adrenal
insufficiency have mentioned that the sensitivity to sun went with cortisone
treatment, Id be surprised if what is being related to by many here is sun
induced bacteria HERX, as claimed by TM but rather a hormonal crisis being
brought on because of lack of adrenal hormones.
Many of the people who have complained of so-called
Light Herx, here and on the MP site have described symptoms exactly as I had
that were clearly not herx but rather related to hormonal changes. If anyone
looks through the battles I had on the MP site, you will see many arguments I
had with those 'in the know' with me explaining to them that what I was
experiencing was no Herx but hormonal. Contrary to their professional opinion.
The other interesting thing I learn recently (from
those in the know about Addison's) is that some drugs are well known to deplete
ones reserves of Aldesterone and Cortisol. I will over the next few days try and
compile some more evidence to show this. But if you read between the lines I
think we might all seriously consider having a good look into the possibility
that what is noticed as sensitive to light could be being caused because of
Adrenal hormones insufficiency.
TM: What you posted to the message board is
absolute bää. Do you have any idea what the effect of Cortisol is on the immune
system? Well, it is time to find out, Steve, before you kill yourself.
Meanwhile, I am not going to let you induce anybody else to kill themselves. I
know more about corticosteroids than you ever dreamed, Steve, and I have had
quite enough of this nonsense.
Your conclusions are totally wrong. Dozens, hundreds (who cares how many) sick
people have recovered based on our understanding of these diseases.
You have not recovered. That is the bottom line. I can't help you while you are
convinced that everything is soooo simple. Convinced that you are right and
everybody else is wrong.
SC: What I posted is absolute fact. No bää.. My
ACTH tests are now confirmed 10 times the limit they should be. I got almost
banned on your site for trying to explain that what Meg and others were telling
me was D herx was wrong and that rather it was hormonal. Go see your self Im
sure you can remember though. You stopped my conversations from continuing.
I have been screaming Adrenal crisis, Addison's life threatening episodes. Yet I
have never had any further responses from any of yourselfs about this. Nothing
by way of help what-so ever. Apart from take more benicar. Avoid Light. This is
Bää.. Addison's Kills man.
And to dismiss ones experience because it does not fit well and snug into your
theory serves only to do harm to the individual and possibly your own reputation
as time goes and the truth comes out.
You have consistently failed to recognise the gravity of what I have been
saying. You have all fought me consistently about my theories of Addison's. What
is more you have banned me from discussing it on your board and clammed I was
just trying to cause others unnecessary alarm.
I don't know if you are aware but someone else I know on benicar nearly died a
few weeks ago, off? have a guess : Adrenal crisis. I know that The MP works. But
I am still not convinced about your theory about the Vitamin D issue, but time
will tell on this. I do strongly suspect however that Addison's will occur in
some who do Benicar and abx. Not many but I strongly suspect it will be the
straw that breaks the camels backs in at least a few.
You say you know more about Cortisol than I ever well. "Do you have any idea
what the effect of Cortisol is on the immune system" Yes without Cortisone
people with Addison's go into shock and die, they always did until it was
synthesized. Yet I know only too well that it has been incorrectly dished out to
all and sundry when they have suffered with inflammatory diseases. I having been
DX with ReA auto-immune disorder have been offered all the bää. under the sun.
Yet before this time I have NEVER taking Cortisone b/c I too know that it is a
stupid solution to an immune problem. Instead I went out and self prescribed abx
that have giving me back my life to this point.
Cortisone in higher doses is bad, but there is a point below where one will die
without it. It being commonly known as Addison's and no amount of benicar is
going to save someone when they are in one of these crises. I KNOW BECAUSE I
HAVE HAD 5 now. Each one life threatening. And each one has weakened me further.
You say I will kill myself, what by taking cortisone b/c I have Addison's? Are
you completely äää. If I don't take it Im a dead man. Go and look in your
articles and show me where Addison's crisis will be cured by benicar! IM
WAITING.
Others need to be warned. There is a possibility that while attempting the MP
one who is borderline Addison's may run into a crisis. If that is the case they
need help. The name of that help is called CORTISONE. No bää. talk about åavoid
light or take more benicar.´ TAKE CORTISONE. THAT IS THE ONLY CORRECT ADVICE.
Everything else is Bää..
I strongly suspect that Benicar depletes the bodies reserves of Cortisol quicker
than otherwise. I cannot prove this yet, but the literature does mention a
connection with Aldesterone. Among those in the know about Addison's this fact
is widely recognized about certain drugs depleting ones reserves of Cortisol. I
will find the data in due course I assure you.
It is no great shakes to assume that the benicar does the same.
Especially with abx. Since the bacteria wriggle it plays havoc with the immune
system and I have not heard of one person yet who did not go through serious
herx when the abx started. So I think this is a logical conclusion to be
considered even without hard data at this time. It is therefore only responsible
to warn others about this possibility.
TM: Steve, Your conclusions are totally wrong.
Addison´s is very common in the Sarcies. You take Cortisone and you will feel
better - for a year or two. Just look at the sarcie message boards.and you will
see the havoc that corticosteroid supplementation brings. the relapse following
my last 9months of steroids in 1989 left me barely hanging on during the decade
of the 90s.
The sun sensitivity is part and parcel of the healing process. It has nothing to
do with the MP meds, but with the bacteria being killed. If you supplement with
corticosteroids you will stop the killing process and you will stop the light
sensitivity - for a few years - until you relapse.
Can't you guys understand that there is a century of failed understandings and
failed therapies lying behind us? The only folks who have ever recovered are the
ones whose advice you are rejecting.
SC: My conclusions are not 'totally wrong'. Make
your self-clear. Which ones please tell me precisely?
I state:
Benicar / Abx (or the Herx as a result) depletes adrenal reserves.
Addison's symptoms are Tanning of the skin and light-sensitivity. This point is
not mentioned in ANY of the MP papers. OVERSIGHT I think so?
I assert that these heart Herxs that people are complaining about are being
brought on by sunlight, are hormonal and NOT bacteria Herx. Adrenal hormones at
that! Look into the symptoms of adrenal crisis It is as clear as daylight.
People close to Addison's are at risk of having an adrenal crisis, which can be
brought on B/C one is under stress. Benicar and ABX Cause stress!
I am not advocating people take cortisone for inflammation. I never did myself
and never would. I know even just by being an electronic designer that is a
stupid solution to a problem. I AM saying that if one is close to Addison's and
they do Benicar and abx then they need to be warned that they may suffer an
Addison's crisis and in that event should take CORTISONE.
Benicar / Abx (or the Herx as a result) depletes
adrenal reserves.
TM: That is a non sequitur. There is no evidence to
support this statement, and the hormonal cascade based on 1,25-D normalization
would indicate it is incorrect on its face
SC: You are really on very thin ice if you think
that benicar and abx, I.E serious Herx does not deplete adrenal reserves, as a
point of fact stress clearly does. So trying to dismiss this clearly obvious
fact shows a lack of logic.
I will be back on that point and prove to you that in Addison's it is known that
other drugs are known to increase ones need for cortisone! Yet I´m sure you can
surmise that yourself.
SC>Addison's symptoms are Tanning of the skin and light-sensitivity.
SC>This
>point is not mentioned in ANY of the MP papers. OVERSIGHT I think so?
TM: No, this is irrelevant
SC: It is not irrelevant when you´re having a
so-called (described) heart herx. On the contrary how a bacterial die off herx
could cause one to experience such a dread awful feeling in minutes after being
exposed to sunlight is a claim what needs to be proved by you. It is well proven
already that Addison's are sensitive to the sun (Adrenal crisis can be brought
on by this alone). Now it is up to you prove that these slow growing bacteria
start a serious herx in a few minutes in the sun and you will have an argument.
Currently you have nothing, not a single paper that backs this up, and the best
strategy you can come up with is dismissal.
SC>All these Heart Herx that people are complaining about being brought
>on by sunlight are hormonal and NOT bacteria Herx. Adrenal hormones at
>that! Look into the symptoms of adrenal crisis it is as clear as
>daylight.
TM: This statement is incorrect.
SC: Well it can be proven (it is proven) that
people with Addison's react badly to the sun. The symptoms are serious problems
in the electrolytes, and blood pressure. Stemming from the Pituitary (ACTH no
doubt). I have had these personally and despite being told it was bacteria herx
from your staff, I stated clearly that it was hormonal and yet I was dismissed.
(Ignorance on their part.) I shouted Adrenal Hormones at that. You and your
staff are telling people on a regular basis that light will cause a bacteria
herx. Thus avoid the light. This might well be so in one sub set of people but
clearly with me and at least one other person who has experienced the exact same
effect with the sun and then resolved with cortisone you were all clearly
incorrect. (We were on the brink of crisis not having a little herx). I am yet
to see you site a paper that shows how slow growing bacteria can affect the
heart in such a dramatic that after such short exposure to the sun will cause an
adrenal cri sis or at least what some refer to as heart herx. Until then you
would be well advised to inform your staff about the possible interactions of
the sun on those with Addison's, and the possibility of adrenal crisis. How to
spot it and what the correct advice to give to people in such an emergency. That
word is CORTISONE.
SC>People close to Addison's are at risk of having an adrenal crisis which
>can be brought on B/C one is under stress. Benicar and ABX Cause
>stress!
TM: Stress does not necessarily cause exacerbated
th1 disease, as exacerbated th1 disease decreases the stress threshold. The
interaction is not as simple as you have stated it
SC: Nonsense it is. While Benicar and the TH1
modulation helps reduce stress, but the abx cause havoc, and Benicar increases
all this. (Increasing the strength of the abx is commonly claimed in the MP
Papers).
SC>I am not advocating people take cortisone for inflammation. I never
SC>did
>myself and never would. I know even just by being an electronic
>designer that is a stupid solution to a problem. I AM saying that if
>one is close to Addison's and they do Benicar and abx then they need to
>be warned that they may suffer an Addison's crisis and in that event
>should take CORTISONE.
TM: No, in fact Th1
patients need to wean off cortisone before starting antibiotics. Sometimes they
need to start Benicar before fully weaned, as the weaning process itself is too
painful otherwise
SC: You seem to be ignoring my point. People taking
cortisone as an anti-inflammatory might well need to reduce their doses before
the benicar will work. But I am not talking about these people. I am talking
about people who have Addison's who produce little or no Cortisol and
Aldesterone by themselves. If they reduce their cortisone they will most likely
have a crisis and possibly WILL DIE. I´m NOT TALKING about all the millions who
are pumped Cortisone because the Doctors no nothing about TH1 diseases.
I have had more than my fair share of Herxing. Doing 1.5G
Cipro per day while in full swing bacteria heaven for 6 weeks teaches one about
the art of perseverance. I know what a herx is believe me. I get them in my
prostate and left eye. The shit going on in my head, and heart was hormonal. Now
I can prove was caused by ACTH levels 10 times the norm. I now know this is
caused because of Addison's. If you were not so obsessed with this hatred you
have for cortisone (Which I know has been a daft solution for many years) then
you might have been able to help me when I started explaining the crisis I was
having. As it is I´m really annoyed at you and your staff because I have now had
5 adrenal crises, and one is clearly enough to kill anyone. You and your staff
have had every opportunity from the very first one, when I posted what happened
to alarm me of the potential threat. Yet you ALL said little more than avoid the
sun and take more Benicar.
YOU and your STAFF CLEARLY OWE ME AN APOLOGY.
YOU and your staff need to wake up to the Addison's connection before someone
dies.
I want to ensure this does not happen to anyone else. With or without your help
I will do what I can. I am sorry you are unable to listen to others. I still
appreciate your efforts, I know what difficult job you have burdened yourself
with but your ignorance and dismissal of others and me is unforgivable to me at
this point.
TM: Steve, Please be assured that none the 30+
physicians on MarshallProtocol.com, nor the moderators (including the RNs) have
indicated any concerns such as you are expressing. There is a way to beat CFS,
but it involves total objectivity, and the collective experiences of more than
one individual.
SC: What on earth does that have to do with
Addison's and ARBs? I bet you one thing, none of them have the faintest idea
what it is like to have an adrenal crisis. TAKE IT FROM ME it´s like the worst
feeling you can ever imagine!
SC>Benicar / Abx (or the Herx as a result) depletes
adrenal reserves.
TM: That is a non-sequitur. There is no evidence to
support this statement, and the hormonal cascade based on 1,25-D normalization
would indicate it is incorrect on its face
SC: I have only just started the search to show
that some drugs will increase the need for extra cortisone and Aldesterone in
people with Addison´s. Here is something that looks like it could hold some
indications that should be considered.
"role of the renin-angiotensin system for the maintenance of blood pressure in
the state of adrenal insufficiency."..............
Nippon Naibunpi
Gakkai Zasshi. 1978 Nov 20;54(11):1262-70.
[A study on the pathophysiology and diagnosis of adrenocortical insufficiency
using angiotensin II blocker (author's transl)]
[Article in Japanese]
Ogihara T, Hata T, Maruyama A, Nakamaru M, Mikami H, Mandai T, Kumahara Y.
Angiotensin II analogue (AIIA), 1-sarcosine, 8-isoleucine angiotensin II (Sar1,
Ile8-AII), was given in a graded dose to patients with adrenal hypofunction of
various etiologies, and the blood pressure response to AIIA was observed to
investigate the role of the renin- angiotensin system for the maintenance of
blood pressure in the state of adrenal insufficiency. An agonistic pressor
response to AIIA was observed in the control subjects without adrenal
hypofunction. In contrast with this, patients with Addison's disease showed a
blood pressure fall to AIIA.
When the test was repeated on the same patients after hydrocortisone
replacement, these patients showed a neutral or pressor response. Three patients
with adrenalectomy and hydrocortisone replacement showed a pressor response to
AIIA in a supine position. When these patients were tilted, fall in blood
pressure to AIIA was observed in two of them who had been on a regular diet,
whereas one patient who had been on a high sodium diet showed no fall in blood
pressure with this procedure.
We concluded that the renin-angiotensin system plays an important role in the
maintenance of normal or subnormal blood pressure in Addison's disease and in
the postural change of adrenalectomized patients on hydrocortisone and regular
salt intake. The response of blood pressure to AIIA may be a clue for the
diagnosis of Addison's disease and the evaluation of the adequacy of replacement
therapy with regard to these patients.
PMID: 720700 [PubMed - indexed for MEDLINE]
TM: Proof?
You have just sent me a paper. The (ancient) opinions of a group of researchers.
Science has advanced a lot since this group produced these postulates. Such an
abstract does not offer proof, I am afraid. If it did, then anybody with an
Internet connection could immediately solve all the diseases which currently
afflict humanity.
TM: Detailed response. The paper is old, before we
understood anything about 1,25-D and the real complexity of the endocrine
system. Additionally, the hypotheses advanced by those investigators (to explain
their observations) were incorrect.
For example, I participated in the landmark work on pulsatile delivery of
Gonadotrophin Releasing Hormone (GnRH) after this paper was published, and our
work (20 years ago) was still only just starting to unlock the complexities of
the endocrine system.
ARBs weren't even discovered when that paper was written. They are taking about
angiotensin
SC: I cannot understand the basis of your points.
Its an old paper so what?
before you knew about 125D, so what?
What did they get wrong. As I see it they are warning of the use of angiotensin
2 blockers (which is what Benicar is) in people who have insufficient Cortisol
(Addison's). What they seem to suggest is that people who were taking cortisol,
avoided the problem of potential adrenal crisis. What is wrong here. Seems like
it holds some logic to me at least.
SC: I am sure that I will be able to find further
evidence suggesting that benicar + abx (even by way of herx alone), will
increase ones need for Cortisol and Aldesterone. I am sure it will not take to
long, and appears to even a layperson such as myself that it would be the
logical result of such stress. (If not directly potentated by the ARB directly,
which is not the basis of my claim), My claim has always been the based on the
increased herx of using ARBs and ABXs. Not to mention other factors such as loss
of sleep, some face while on MP.
END OF Q & A.
I remain convinced at this time despite the previous Q & A with TM that for
people who are borderline suffering with Addison´s or at least adrenal fatigue,
and who then go on to attempt to use Benicar or other ARBs along with ABX, who
then find that they are suffering with extremely low blood pressure should in
effect have there Cortisol levels and more importantly their ACTH checked ASAP,
to ensure that they are not at risk of having an adrenal crisis. I forewarn
others reading this that the lead-time for an ACTH test can be up to 10 days.
Which is of little help in a crisis. Not to mention the added time it can take
to arrange such a test. My 8h Cortisol test did not indicate a problem. These I
understand are notoriously unreliable.
I feel the sensible way to advance for those considering using ARBs such as
Benicar and ABX, is to before commencing treatment to try and arrange an ACTH
stimulation test.(Not the same as an ACTH test.) These are quite expensive and
difficult to arrange. But this is the only test that would conclusively indicate
the function of the adrenal glands properly.
More over in the unlikely event of crisis ensure that you get a doctor to give
you Hydrocortisone injection or tablets if not so serious, and something to calm
you down. Else you will experience a fate indescribable.
I hope this effort goes some way to ensuring that others are able to avoid my
own fate, and that further the people at the MarshallProtocol.com site are able
to recognize this problem for the seriousness that their dismissal entails and
discontinue to ridicule those that are complaining of these symptoms by fogging
them off as bacteria herxs that are rather strongly suggest adrenal weakness at
the least but more seriously adrenal crisis and imminent Addison´s.
Despite my own problems and unfortunate experience with the people at the MP. I
remain convinced that TM has discovered a huge breakthrough in the understanding
of these mystery illnesses that plague us so. Having used Benicar at high dose
for 3 months I personally was able to rid some unwanted and hard to reach
pathogens. I do think it holds merit. But I also do have grave personal doubts
about ignoring these aspects, which could be avoided easily by screening them
prior treatment and ensuring they had the necessary adrenal reserves to continue
the treatment to the point of good health.
Sincerely
Steven Carroll
colourbleu33@free.fr
The quotations from the MarshallProtocol.com site are with either the
permission of the author or 'fair use'. The information posted there by site
policy is not private:
"There is no right of privacy for any messages posted to
the message board(s). Messages may be converted to email form for transmission
through the message system(s) and there is similarly no expectation of privacy
for any such messages, whether designated private or public."
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