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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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