JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
BENICAR TM Tablets (olmesartan medoxomil)
PRECAUTIONS General impaired Renal Function: As a consequence of inhibiting the renin-angiotensin-aldostemne system,changes in the renal Function may be anticipated in susceptible individuals treated with olmesartan medoxomil. In patients whose renal function may depend upon the activity on the renin-angiotensin-aldosterone system (e.g. patients with severe congestive heart failure,)treatment with angiotensin converting enxyme inhibitors and sngiotensin receptor antagonists HAS BEEN ASSOCIATED with oliguria and/or progressive azotemia and (rarely) with ACCUTE RENAL FAILURE and/or DEATH. SIMILAR RESULTS MAY BE ANTICIPATED IN PATIENTS TREATED WITH OLMESARTAN MEDOXOMIL. (See CLINICAL PHARMACOLOGY,Special Populations.)
In studies of ACE inhibitors in patients with unilateral or bilateral artert stenosis, increases in serum creatinine or blood urea nitrogen (BUN) have been reported. There has been NO long-term use of olmessrtan medoxomil in patients with unilateral of bilateral renal artery stenosis, but SIMILAR RESULTS MAY BE EXPECTED. (This is taken directly from the literature supplies by Sankyo Pharma.)
To say anything opposite borders on dangerous. Where do you people get your information???
MARNIE IS CORRECT!!!!!!!!!!
By the way...Marshall has a degree in ELECTRICAL ENGINEERING...no clinical experience, no affiliation with a REAL research institution (his Autoimmune Research Institute is just a name...no building, no phone...zilch.) Marshall has absolutely no medical clinical experience. He does all his research on the internet. He has NO experience treating Lyme patients in a medical setting. He simply collects info from the internet and uses the papers of others to present "His" theories. Just look at the amount of references.
The information being given by people on this subject is downright dangerous, and because diagnoses are being offered by NON MEDICAL (HUMAN) PROFESSIONALS, ILLEGAL AS WELL!!!
Marnie has been here for YEARS trying to help us all...she NEVER posts subjects that have not been well documented by REAL research...in an approved research institution, by REAL MEDICAL RESEARCHERS.
All one has to do is read the literature that comes with medications before making UNTRUE statements. Also, the pharmacist at Sankyo admitted they do NOT have all the side effects listed simply because some people do NOT report them. Silly, simple, but true.
JRW
[This message has been edited by JRWagner (edited 11 May 2004).]
I just don't get it. NObody's forcing you to do this protocol.
Did you not read the stuff you just posted? It's saying there's a certain group of high risk people, with serious heart disease, who can have problems with ARBs.
Any of the medications we take pose risks. That's just the way it is. EVERYONE would be smart to research EVERY drug they take.
And also, could you please reference your posts? They mean nothing otherwise. As a matter of fact, the information in that post again refers to angiotensin receptor blockers in general. The only place Benicar is mentioned specifically is in the title. How do I know that it's even a reliable source of information, or just some company that puts the same warning on every ARB, if I can't check it for myself?
Thanks for pointing this info out, but why the scare tactics?
No one's being encouraged to do this protocol without a doctor's supervision. This is a prescription med. You can't just pick it up at your health food store and start experimenting. ALL prescription meds have risks and should be used under the supervision of a physician.
Also, Dr. Marshall is a PhD. Whether it's in electrical engineering (although his PhD dissertation was related to Diabetes), or physics, you've got to be pretty intelligent to get a Phd. My husband's a PhD. They're capable of assimilating quite a lot of information, especially if motivated. Doesn't mean they're always right, but the point is, they're not stupid.
Also, comparing Marshall's protocol to something like ICHT, as you did before, is not a fair comparison. ICHT treatments cost thousands and thousands of dollars. Marshall's not charging a penny. He's not making anything from this. He runs a non profit foundation for Autoimmune research. What is so threatening about that? I don't get it?
So many of us have said that what we need is a doctor or researcher who gets sick himself. THEN maybe we'll see some progress. That appears to be what's happened with Marshall. His 20 years of efforts at trying to understand his illness and get well is to our benefit.
penny
Posts: 142 | From San Diego California | Registered: Apr 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hello JRW, I sure am glad there are folks like you out there protecting some(like me) old to lyme but new to the puter and the different drugs out there....especially the one's I have never heard of.......as a rule I always read the fine print on the literature I get from the pharmacy and re-read it to see if I'm getting any of the side effects periodically....
I was going to give this drug to my doctor and he may have given it to me cuz he thinks I know more about lyme than he does...and well you know what might have happened...
The Yin and Yang of it is I never see any sense in messing with the kidney's...if ya know what I mean chee wise that is....
thanks again the zman
------------------
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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PS: I am an Electrical Engineer too, and I am NOT recommending Benicar! YipEEEEEE! LOL!
Posts: 221 | From fort smith, arkansas, usa | Registered: Feb 2004
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Ahem...perhaps someone should read the info again...which is from the company that manufactures the drug...Arterial RENAL stenosis is not HEART disease...it is KIDNEY DISEASE. Hello????The eg.(example)of patients with severe congestive heart failure is not saying these are the ONLY people who should be careful!!!!Susceptable individuals could encompass a much larger group...i.e., people with Kidney Problems, etc. not just heart patients. In addition, since the drug is so new, according to Sankyo, all side effects are not known at this time. Russian Roulette anyone?
As for me and the protocol...I stopped...why? My doctor, learning of my lightheaded feeling and fatigue (he said that it was DEFINATELY NOT A HERX)told me to stop. He knows better than anyone here...that is a FACT.
I never said Marshall was stupid...never...I did state that his "Institute" was bogus...a deliberate use of the word to try and give credability to his "research."
There are many PHD's out there, very few try to give medical advice...unless they work in a REAL research institution, and have ties with the Medical establishment...which is not ALL bad...look at out LLMD's for example.
Do what you want...listen to people masquerading as Human Doctors with cures.
I have learned all I need to know.
Oh, YES...hypocritical of me to do the protocol??? I know those that are new to this board would not understand...I was doing it for US...even though I did not believe it would work.
Penny...you still have not answered why you are here, and why any LLMD has not given you a clinical diagnosis of Lyme?
JRW
[This message has been edited by JRWagner (edited 11 May 2004).]
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
thanks JR,
I"ve been saying this all along as a nurse..but no one wants to listen to me either...they all want to try 'anything ' for that magic cure.....
all you can do is warn them, and let them find out on their own....
besides the kidney problems, IT HAS NOT BEEN TESTED ON CHILDREN...THIS IS BIG!! But many still want to try it out on children...I even ran it by dr. jones..he had never heard of it..when i told him it hadn't been tested on children adn wasn't approved by the fda for use on children , he wasn't surprised....'not for his kids', was what I heard..until it's been identified safe for kids. at least abx are measured out in small doses for kids...
JR all you can do is warn...then we just have to leave it alone..as a nurse...I wish more would listen...but it doens't work that way....
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
I think it is important for the ones of us urging caution to keep on doing so here. That is the only way that we might prevent someone from making a mistake.
It would not surprise me if Dr. Jones would not use the drug if it was not approved by the FDA for use in kids. I don't think Scott, or Marshall for that matter, has even thought through the consequences of giving it to them let alone the high dossage they are recommending.
I have been treating this disease for two years now, I was considered a very tough case. I just got back new blood numbers today and there was big improvement from 3 months ago.
I finally feel that I am on the road to recovery even though I am in the middle of a Herx from hell.
My doctors have been very methodical and I think it is finally paying off. Until we have a known cure, fast and sloppy might put you nine feet underground.
My Kidneys and Liver are doing great, even with 2 years of antibiotics, my SED rate that was off the chart 3 months ago was a 1. 30% of my symptoms have subsided or disappeared entirely. I have lost 190lbs and my cholesteral has been cut in half. According to the chart I am 1/2 as likely as average to have a heart attack.
My CRP has gone from high to low. I think it is clear that the treatment is working.
In my son's case after 8 months we are finally seeing improvement. Slow and steady has been good for both of us. Dr. Jones and Dr. H to me are lifesavers. Without them I dont know where my family would be.
It really does anger me to here the things Scott is saying about our LLMD's that are not quick to jump on the bandwagon. That alone makes me take everything he says with a grain of salt.
Posts: 533 | From Las Vegas, NV | Registered: Jun 2003
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posted
Thanks for the info, Herr Wagner..it's an important piece to look at in checking into this idea, even in theory..with our Docs.
I'm curious as to what my Doc and Doc J think of it all, objectively..and even if not to use Benicar..simply the cascade and the immune disfunction.
So I'm bringing up some of the info Marnie sites with them as well. Maybe intensive work on restoring Magnesium is a safer way to accomplish this..I wouldn't begin to know.
My degree is in wading through the muck and mire for me and my kids, and keeping my chin up.
There could be value to Benicar, or perhaps more value in the immune relation to our illness..
I simply find the info very intriguing, and I'm glad it's been put forth by FreeToReakon.
Looking forward to getting specific feedback from Docs.
Mo
[This message has been edited by Mo (edited 11 May 2004).]
Posts: 8337 | From the other shore | Registered: Jul 2002
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Thanks for pointing out how silly this argument is.
JR,
I thought I'd answered your question re: why I'm here, ad nauseum, but here goes again:
I've been told by more than one doctor that it's very possible, even likely, that I have lyme, and that I can do a $1,000 test, but even that testing is not 100% infallible.
Now, if I didn't already have a diagnosis of chronic osteomyeltis, which is a very difficult bone infection (which could include the borreolis organism), I might consider it.
But here's why I avoid diagnoses unless they're going to benefit me. A CFS/FMS or a Lyme diagnosis is an almost automatic excuse for doctors to ignore anything you say, to no longer look at your symptoms objectively. They blame all sx on the diagnosis, whether it's justified or not.
I NEVER immediately tell new docs that I've been diagnosed with CFS. It gets me nowhere fast. It's a complete non diagnosis, and yet it overshadows everything. I DO often tell them about the osteomyelitis diagnosis, not only because many of them don't understand it (which means they don't immediately blame all of my symptoms on it), but because it's considered a life threatening illness by insurance companies, and treatment cannot be denied. So that works to my advantage in getting the treatment I need and insurance coverage.
Getting a lyme diagnosis isn't going to change my treatment (I've already been on months of i.v. antibiotics, and most of the other treatments lyme patients have done).
I strongly believe that all of our illnesses are related and have a pathogenic basis, whether the same or different organism, the effect on the body is pretty similar.
I've also been told that people who have SARC are much wiser to NOT get an official diagnosis, because it's another one of those difficult illnesses that has no official "cure" (usually steroids for symptoms) and doctors tend to lump every symptom under the Sarc diagnosis. But what's worse, many will refuse to take on a patient that is such a difficult case. I've seen this happen more than once. Doctors just don't want to deal with patients like us who are so difficult and expensive to treat. People die because of that reluctance.
So them there's my reason for not rushing out to get a lyme diagnosis. I see no benefit from getting it. If someone figures out a cure specifically for lyme, well then I'd be all over the testing, and dig up the money to do it. But I can't see any reason to do, when the outcome doesn't change.
Also, you've made a lot of statements questioning my motives.
I'm 100% about wanting to find a cure. I've been on too many lists where the mantra is, THERE IS NO CURE. I just don't buy it. At least the lymies seem to have hope.
I agree that we should be cautious and sensible, but also that some of us may not have a whole lot of time. There've been many days, especially pre-antibiotics, where I was too sick to feed myself, let alone figure out how to treat myself. If I see something that makes sense to me, then I'm willing to take a certain amount of risk, and share what I learn with others who may benefit from what I learn. I'm not trying to push for others to do the same thing. I'm definitely not suggesting that anyone do this protocol without the supervision of their doctor. I'm only sharing my own experience and what I'm learning to help people who may be interested. I have NO other motive. Period. I want to get well. I want to get out of these forums because there's a CURE!!!!
I'm going to stop defending myself now. It's a total waste of energy. I just want to share information and discuss it without a bunch of hostility, just like other therapies are discussed. In my opinion this happens to be an exciting area to discuss, but nobody HAS to do it.
penny
Posts: 142 | From San Diego California | Registered: Apr 2004
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posted
Here's Dr. Trevor Marshall's response when questioned today regarding the safety of Benicar.
Author: Mike (---.net1602.lv.sprint-hsd.net) Date: 05-11-04 21:44
Hi,
I have a quick question regarding Benicar. Apparently people have been taking up to 120mg of Benicar every 24 hours which is much more than the regular designed label use. The drug info. cautions about people with kidney are certain heart problems which is very common warnings for drugs in general. My question is, has anyone had kidney or related problems directly from the high dose Benicar that you know of? I assume not since so many are taking, but wanted to verify.
Mike, Nobody has had any side-effects which can be attributed to benicar. Out of nearly 200 (mostly seriously ill) folks.
Whenever bacteria are killed, the endotoxin release temporarily increases the markers of inflammation, but everyone has managed this as well.
Benicar is one of a class of drugs called ARBs, typically prescribed for mild hypertension. The FDA assessed that, after excluding special risk populations, the"Treatment with BENICAR� was well tolerated, with an incidence of adverse events similar to placebo" (sugar pill).. Millions of people (worldwide) are taking Benicar for hypertension, and some have done so for several years.
The dosing is not an issue. The FDA NDA package (the documents Sankyo submitted to the FDA in support of their licensing application) included a study showing linearity up to a 320mg dose. It is a joke to try and portray Olmesartan medoxomil as a "risky" drug.
The New England Journal of Medicine, Nov 10, 2003, carried an editorial titled "ARBs in MI - A Matter of Dose" which discussed the emerging data that ARBs need to be dosed at levels above the levels anticipated when the FDA initially approved the drugs, in order to gain protective benefits that nobody ever anticipated when these drugs were first commissioned for treating mild hypertension.
We have been cooperating with a Sankyo scientist who is publishing a paper going into these issues in more detail. Each individual has to decide whether they want to wait for that paper to be completed, or start the healing right now.
..trevor.. ps: you are actually incorrect with the 120mg figure, many of those who are most ill have to take 40mg every 4 hours from time to time = 240mg daily.
Posts: 142 | From San Diego California | Registered: Apr 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
so I guess the FDA dropped the ball on this medication when it said it was dangerous at high amounts and did have some side effects....huh?
boy, that FDA..what are we going to do with them? You 'd think after years and years of testing a medication they'd get it right?!
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by pennyhoule: JR,
I just don't get it. NObody's forcing you to do this protocol.
penny
Ill tell you why JR is doing it just like half the other people here he's desperate for relief Period.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Please don't think for a minute that I have doubted your sincerity in trying this. However, I have worried about the wisdom of your trying something new without an adequate understanding of it.
I myself am a late-stage neuro Lymie and I've been around the boards for a long time. I have learned that, when it comes to this disease, the turtle wins the race and patience makes the best patient.
It is important to me that you know that I also do NOT doubt Free2Reckon's sincerity or Bpeck's wisdom in sharing Marshall's concepts with us. They have investigated this very thoroughly. I am confident that Scott has the wisdom and the experience to see how this applies to him and to make very good decisions about his protocols.
Given recent research in others similar areas that carries over to this, I cannot help but feel that our Scott may very well be the one paving a brave new path for us to follow. I think he and Bpeck have a keener understanding of the dynamics at play here than most of us are able to appreciate.
Your cautions about TM are valid, but I've also learned that, regardless of one's original discipline or field of study, if they or a loved one has been impacted by a serious illness, they will do whatever they must do in order to learn about it. While you are doubting TM's credentials and his area of expertise, you might think about the fact that internet publishing and offering one's advise about treatment options seldom makes a person wealthy. It seems to me that he is inviting peer review.
Perhaps he has changed his research orientation and finds himself drawn to Sarcoidosis for more personal reasons. Maybe this disease afflicts him or a loved one. In my tenure as a patient, I have had the honor to meet many such people for whom that is true. The people I've met come from all walks of life and all backgrounds, but that has not lessened their abilities to contribute.
As for foundations, it seems timely for me to recall the Vanderhoof-Forschners, the Pat Smiths and a few people with lesser-known names who have been of even greater help to me personally in my quest for health. I am alive today because of one such person who worked out of the humblest of home offices.
As far as his or anyone else's PhD goes, it shows that he is a member of that small portion of society that has the discipline and curiosity to study for an advanced degree in a field. It would appear that, in that time, he has gleaned something about the finer aspects of researching an idea thoroughly and interpreting statistical data.
When I think of PhDs, I can't help but think of curious people such as the playful Richard Feynman and his interest in fields other than physics. The abilities to learn and assimilate can be applied to any area where one has strong interest and I will not underestimate the value of those qualities with regard to anyone.
JR, whenever you set out to explore a therapy in the future, please do so thoroughly. Do not go in haste for haste makes waste. Trust that time will be on your side and approach things only when you are ready to commit to the process.
While you felt that leaping without looking was doing us all a favor, that behavior can be extremely detrimental not only to yourself, but to others in our group as well. It seems as if you felt that by being biased so completely against something, you would not have a bias at all and that is not the case. With that negative mindset you couldn't follow the protocol carefully as suggested and you were unable to give it a fair chance or an adequate time frame.
I think that our LLMDs or any doctors who are curious about this and for whom it makes enough sense to try it, will want to do so slowly at first, with stable patients who are prescreened and who can proceed with one thing at a time while sorting out new symptoms. They may want to collect data and proceed with caution at first only with the people they feel are the best candidates for this.
As impatient as I've felt at times, I do trust that process, especially given the current political climate which is much more rabid than any of these Lyme boards or discussion forums.
You are a dear, sweet man and when I think of all your suffering and your desperation for answers, I recall all too easily where I have been at times. At the same time, I cannot help but think about other patients I know personally who make even our suffering pale in comparison. There are many of them who have not found lasting answers and who have invested everything and then some in trying. We must find lasting cost-effective answers or people will continue to be denied care and others will fall by the wayside as treatment failures.
We owe it to our patient group not to make rash emotional decisions about things. That could prove harmful for others either because we have nixed a therapeutic protocol that might be their answer or because we have pushed them down a road that was not right for them and caused them to lose precious ground. Personally, I am most worried now that we might nix a therapy that could help someone like our Rosesisland who has suffered so much and for whom answers have not been easy.
Again, I think that patience makes the best patient. That is not to say that I advocate inaction. It's just that I think that for the process to work it must be given a proper chance with the proper people. I am very intrigued by TM and Scott's hypotheses and I am looking forward to learning more.
[This message has been edited by treepatrol (edited 12 May 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
This is a NEW drug. It was intended to treat high blood pressure at specific doses.
So, what Marshall is promoting is using a new drug, for another disease(off label use), at much higher doses than those that have been tested.
Caution.
My sister has been taking Humira ($$$ shots) to completely block TNF alpha. Despite my pleading, she has chosen to go a "medical" route. This is, ultimately, HER CHOICE. I have to accept this, hard as it is.
The doctor (who came HIGHLY recommended) did NOT follow manufacturer's protocol (!) and test her for TB BEFORE he started her on this drug!
Yes, she FEELS better, BUT...her knees are totally disintegrating and she just had one replaced. The hospital (a major teaching hospital) was supposed to test the tissue removed (the knee surgery) for Bb as directed by sis AND her doctor. Did they? Nope. They "missed" it.
Her blood work, which was "odd"...has been sent to Calif. for further testing. We are awaiting results.
Are YOUR doctors going to do the necessary tests prior to writing a script for this Rx? (Especially K levels.) Do they know WHAT tests MUST be done and constantly monitored?
I've lost faith in the medical system.
Here's some further documented research for those interested in reading it and determining whether or not to try Benicar:
(A side note, first. Many cardiac and BP drugs have the side effect of causing impotence. Whether or not this will happen, according to my Walgreen's pharmacist, is a "trial" thing. So, men...another Rx MAY be nec. if you experience this "side effect".)
Both olmesartan medoxomil and olmesartan tested negative in the in vitro Syrian hamster embryo cell transformation assay and showed no evidence of genetic toxicity in the Ames (bacterial mutagenicity) test.
***However, both were shown to induce chromosomal aberrations in cultured cells in vitro (Chinese hamster lung) and tested positive for thymidine kinase mutations in the in vitro mouse lymphoma assay.
Olmesartan medoxomil tested negative in vivo for mutations in the MutaMouse intestine and kidney and for clastogenicity in mouse bone marrow (micronucleus test) at oral doses of up to 2000 mg/kg (olmesartan not tested). http://www.rxlist.com/cgi/generic/benicar_ad.htm
Renal Insufficiency: In patients with renal insufficiency, serum concentrations of olmesartan were elevated compared to subjects with normal renal function. After repeated dosing, the AUC was approximately tripled in patients with severe renal impairment (creatinine clearance <20 mL/min).
The pharmacokinetics of olmesartan in patients undergoing hemodialysis has not been studied. Hepatic Insufficiency: Increases in AUC0-8and Cmax were observed in patients with moderate hepatic impairment compared to those in matched controls, with an increase in AUC of about 60%. http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf
Common causes of acute deterioration in kidney function include:
medications (ACEI, NSAIDs, ARBs and many others) volume depletion urinary tract obstruction or infection radiographic contrast worsening congestive heart failure kidney vascular disease (aortic dissection, cholesterol embolization) sepsis rhabdomyolysis or hemolysis. http://www.oqp.med.va.gov/cpg/ESRD/G/ESRD_cpg.doc
If you have kidney disease or congestive heart failure, Benicar must be used with caution. In people with these problems, Benicar has been known to impair kidney function or even lead to kidney failure. http://www.healthsquare.com/
Side Effects of This Medicine Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used. These may include certain types of cancer, such as leukemia or bladder cancer. Discuss these possible effects with your doctor. http://health.yahoo.com/health/drug/500393/precaution
(It is a NEW drug)
Additional data on the use of angiotensin II receptor subtype-1 blockers (ARBs) in elderly hypertensives will come from the results of the VALUE trial, which will become available in 2004.
VALUE is an ongoing, multinational, double-blind, randomized morbidity and mortality trial comparing the ARB valsartan with the CCB amlodipine, both with and without hydrochlorothiazide (HCTZ), in high-risk patients.[7]
VALUE is testing the hypothesis that for the same level of blood pressure control, valsartan will reduce serious cardiac events by 15% compared with amlodipine.
An interim analysis to identify the predictors of 1-year blood pressure control and resistance to treatment in the VALUE population was presented by Stevo Julius, MD, DSc,[8] Professor of Internal Medicine and Physiology, Frederick G.L. Huetwell Professor of Hypertension, and Director, Division of Hypertension, Department of Internal Medicine, The University of Michigan, Ann Arbor, Michigan, USA.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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jen13
Unregistered
posted
In regards to the fighting about the Marshall protocol, and all the fighting in the past on lyme boards...
To sum it up: these are a bunch of really ill, chronically ill people, who don't know how to get well and suffer every day. They've tried to educate themselves and many times they're doing the best job they can but are not doctors or biologists so often misunderstand data. This alone gives room for fighting.
They insult each other (24 bit telling James he is writing melodramatic nonsense; even Scott getting pulled into thread fights and defending his reputation and comparing himself to Braveheart, which was shall we say a bit hubristic). It's probably the only place they can vent and feel like they're heard--family, friends, most doctors don't really hear or understand. So they take it out on each other.
The better you feel, the less you fight. So I think its a direct indication of how sick the participants fighting actually feel. (Of course, some people, no matter how crappy they feel, don't engage in these fights because they have more stable personalities).
The actual matters being fought about often don't seem to make a difference--it's just the desire to lash out, to accuse, to warn, to defend, etc.
JR had a right to try benicar--he feels like crap and has tried a ton of antibiotics and hasn't gotten well yet. OTOH, he also has a right to post warnings.
Everybody else has a right to do as they wish, investigate it, not. I myself am not too interested in trying it at this point, as I'd rather kill the source of the problem that is triggering the inflammatory cascade, but if more than a few people report longterm excellent benefits with it I may do so. Watch and wait has usually served me well. The upshot with ICHT for instance, over which we all fought like the dickens, is that one person seems in permanent remission, and others made some headway with it or had temporary remissions but eventually relapsed. I'm glad I waited and didn't run off to Italy. I still think it's a great idea biologically if it could be done safely...but as of now it can't.
I could say, hey, Daniel Berg was beheaded, did any of you watch that--put the Marshall protocol in perspective. What everybody doesn't realize (and I'm sometimes no paragon myself) is that every time you write something nasty, EVERY SINGLE TIME you post something nasty (you are actually creating stress chemicals and hormones in your own brain and body. The person you are harming the most is yourself. You don't realize how this constant cascade of negative thoughts affects your health. It would be better to work on that and try to replace every negative thought, every insulting thought, with a positive one. How can you heal when you're constantly dissing others? Same goes for taking this board so personally you feel hurt and insulted by what some cyberlymie posts, and slink away...just remember, the person who posted that is sick as a sick dog and taking it out via their keyboard and a screen. Even Scott now admits he was having lyme rages towards his wife, and though he considered himself 85% better, was suffering sleep disorder, dizziness, pain, and other neuro symptoms daily.
It's a good bet that the angriest people on this board are feeling the worst.
[This message has been edited by jen13 (edited 12 May 2004).]
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Guys:
I've been sick for 25+ years, so think I'm a little more jaded than Scott.
Because of waxing and wanning of the way I felt I've learned to temper all excitment untill it passes the test of time. In the past, the way I felt could change in 5 minutes.
I've gone one day at a time for years. It's just who I am...
But I think there's merit in Trevors protocol, and that it should be investigated for application in other diseases.
So what if it only helps a certain percentage of people with inflammatory disease?
And who cares what the name of the disease is?? I particularily dislike it when people pit one disease against another - it's disrespectfull.
I actually think it's a GOOD thing we have pro and cons coming out. Healthy debate on any subject (in this case drugs) is a good thing.
How many of you researched the abx you took in the depth Benicar is now being looked at?
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Ive researched a lot of the abx's before I consume them and also check the contraindications, and cross referance any drug interactions including supplements.
------------------ Do unto others as you would have them do unto you.
See heres a few. You searched for interactions between the following drugs and herbs:
(Note: Herbal products are not subject to review or approval from the FDA. Not all of the risks, side effects, or interactions associated with the use of herbal products have been studied. Not all drug interactions are known or reported in the literature, and new drug interactions are continually being reported. This information is provided only for your education and for you to discuss with your personal healthcare provider. )
FOOD may interact with TETRACYCLINE
Calcium-containing foods like milk and other dairy products may interfere with the absorption of tetracycline from the stomach into the body. If this happens, then potentially less of the drug would be available for the body to use and blood levels could become too low. This could make tetracycline less effective at fighting an infection. If possible, take tetracycline at least 1 hour before you eat a meal or 2 hours after you have eaten. Discuss this potential interaction with your healthcare provider at your next appointment, or sooner if you think you are having problems.
This interaction is well-documented and is considered moderate in severity.
Magnesium gluconate may combine with doxycycline in the stomach and prevent it from being absorbed into the body. As a result, potentially less doxycycline would be available for the body to use and blood levels could become too low. This could make the drug less effective at fighting an infection. If you must use magnesium gluconate while you are taking doxycycline, these drugs should be taken at least 3 to 4 hours apart. Discuss this potential interaction with your healthcare provider at your next appointment, or sooner if you think you are having problems.
This interaction is well-documented and is considered moderate in severity.
ALCOHOL may interact with METRONIDAZOLE (in Flagyl Oral)
Metronidazole may interfere with the breakdown of alcohol. If this happens, harmful by-products from the alcohol may accumulate in the body and this may cause intolerable or otherwise undesirable side effects. Potential side effects include facial flushing, feeling lightheaded, nausea and vomiting, a rapid or pounding heart beat, and shortnesss of breath or difficulty breathing. Avoid all alcoholic beverages and alcohol-containing products (such as some cough syrups and elixirs) while you are using metronidazole tablets or suppositories. Ask your healthcare provider about these drugs and this potential interaction as soon as possible.
This interaction is poorly documented and is considered moderate in severity.
When taken together, doxycycline may decrease the ability of amoxicillin to kill bacteria. If this happens, amoxicillin will be less effective at fighting an infection. If possible, avoid using doxycycline while taking amoxicillin. Ask your healthcare provider about these drugs and this potential interaction as soon as possible.
This interaction is poorly documented and is considered major in severity.
When taken together, tetracycline may decrease the ability of amoxicillin to kill bacteria. If this happens, amoxicillin will be less effective at fighting an infection. If possible, avoid using tetracycline while taking amoxicillin. Ask your healthcare provider about these drugs and this potential interaction as soon as possible.
This interaction is poorly documented and is considered major in severity.
Tetracycline is broken down and removed from the body by the liver. If you are taking tetracycline and have been consuming alcohol on a regular basis for a long period of time, the drug may be broken down at a faster rate than normal. If this happens, then potentially less tetracycline would be available for the body to use and blood levels could become too low. This could make tetracycline less effective at fighting an infection. On the other hand, alcohol may increase the absorption of tetracyline from the stomach. This is more likely to happen when alcohol has not been consumed on a regular basis, but in large amounts at one point in time. Although this may cause blood levels of tetracycline to be increased, it is not likely to increase the beneficial effects of the drug. You may want to ask your healthcare provider about this potential interaction if you think you are having problems.
This interaction is poorly documented and is considered minor in severity.
TETRACYCLINE may interact with MAGNESIUM GLUCONATE
Magnesium gluconate may combine with tetracycline in the stomach and prevent it from being absorbed into the body. As a result, potentially less tetracycline would be available for the body to use and blood levels could become too low. This could make the drug less effective at fighting an infection. If you must use magnesium gluconate while you are taking tetracycline, these drugs should be taken at least 3 to 4 hours apart. Discuss this potential interaction with your healthcare provider at your next appointment, or sooner if you think you are having problems.
This interaction is well-documented and is considered moderate in severity.
Doxycycline is broken down and removed from the body by the liver. If you are taking doxycycline and have been consuming alcohol on a regular basis for a long period of time, the drug may be broken down at a faster rate than normal. If this happens, then potentially less doxycycline would be available for the body to use and blood levels could become too low. This could make doxycycline less effective at treating an infection. On the other hand, alcohol may increase the absorption of doxycycline from the stomach. This is more likely to happen when alcohol has not been consumed on a regular basis. Although this may cause blood levels of doxycycline to be increased, it is not likely to increase the beneficial effects of the drug. You may want to ask your healthcare provider about this potential interaction if you think you are having problems.
This interaction is poorly documented and is considered minor in severity.
[This message has been edited by treepatrol (edited 12 May 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
posted
Hey LoneStar..thanks for the insightful comments.
Thanks also to everyone pointing out the value in studying this..objectively.
getting a little background into the inflammatory aspects and immune systems response to chronic illness is most valuable in and of it's self..
I think Marshalls work offeres allot for us to consider..with or without Benicar. I agree, no value in nixing it, or jumpimg on the bandwagon just yet.
Again, I'm really grateful to those putting forth the information, all to be thought about, and hopefully discussed.
The cautions are also most valuable, and help with the weighing process. Also to point out my precious kids and I are on Rifampin..check out the warnings on that one!
However, Docs and I weighed in on the risk benefit, the severity of the infections we needed to address, monitored really carefully, and it has served to turn all of us around. We are really benefitting from it.
of course, the next person may do without it just fine, or really need to avoid it..
You get the point.
I've run the testing, and am asking Doc J questions tomorrow about kids, and also about the theory..and use of the drug in adults.
Also..his ideas on interrupting the cascade..
I'll write here any feedback or ideas..
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
jen13
Unregistered
posted
24-bit, you don't have to repost everything in bold...drives me nuts, actually!
It is not my soapbox, I totally believe it. Been reading Daniel Goleman's book Destructive Emotions, which is a summary of the last (2000) conference between the Dalai Lama and a ton of interesting scientists...
You can also look at the work of Bruce McEwen at Rockefeller, hiw new book on stress.
Lots of people are perturbed by the fighting on the lyme boards.
Well it's a gorgeous hot spring day and I'm off to lunch with my editor, where I will discuss all manner of woo-woo things that you, 24-bit, would definitely poo-poo. I can't really "join you" all because most of what you advocate are drugs and I'm philosphically against them, besides the fact that I don't like what they do to my body. I was horrified yesterday when a friend I've known since I was 22 called me to tell me she was going in for electroshock therapy becuase none of the antidepressants she has ever been on have worked. Well, duh! Why would they work? They're poison, imo. And now that the poison hasn't worked they will electrocute her brain? Good deal.
Bye...have a good day all...keep posting benicar results yay or nay...if JR is reading this, I hope you find a way out of the quagmire someday soon.
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Hello...as the the implication that the source for the info on Benicar and the kidneys...
I HAVE STATED THE SOURCE!!! I have in front of me the packet information sheet that came with BENICAR...the source is SANKYO PHARMA!!!
The problems are the SAME...THE SAME as with other ACE inhibitors...for anyone to state different is FALSE...call the company to verify.
The difference is simply repeating the opinion of self-proclaimed expertss, and repeating or posting information from those who actually synthesised the drug, and those who work for the drug company should be obvious.
That it is not is where the problem is here.
WHERE IS THE PROOF????
WHere are the LONG-TERM STUDIES to PROVE this works...on Lyme or Sarco????
What we have is dubious anecdotal evidence that may or may not be true.
I have NO agenda...I simply don't have seen it all before...NO PROOF...NO DOUBLE BLIND STUDIES...NO CREDIBILITY.
And some of you wonder why the LLMD's are not jumping on the bandwagon????
New York State is revoking Doctor's licenses for supposedly OVERTREATING Lyme Disease.
I guess the doctors should not care and believe in the protocol 100% with no supporting studies to back up their dangerous decision? Of course...SCOTT and MARSHALL's "work" is much more important than a medical license. How silly of me!!!
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hahahahahah sorry great reply JR -------------------------------------------
I guess the doctors should not care and believe in the protocol 100% with no supporting studies to back up their dangerous decision? Of course...SCOTT and MARSHALL's "work" is much more important than a medical license. How silly of me!!!
------------------ Do unto others as you would have them do unto you.
[This message has been edited by treepatrol (edited 12 May 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
jen13
Unregistered
posted
24-bit, I'm not upset. I figure some people will understand what I'm saying. I suppose I feel badly for JR being attacked for his reasonable questions. But I'm on a different path anyway, with my hyperbaric, and starting in again on ozone. When I read all about Scott's symptoms at "85% well" I wondered how everybody on this board really is feeling and whether, since hyperbaric, I'm actually better off than most. I don't know about that. I compare myself to what I used to be, so a few weekends ago when I went on an apparently five mile walk through Central Park, past waterfalls, bridges, into the gardens, and then the museum, although I enjoyed it greatly, I was wiped out by the end of the day, and I felt sad because we'd crossed right by the bikers--at the top of the most intense hill in Central Park, which I used to do daily--and I knew I couldn't do it now. But I don't seem to have all those neuro symptoms others have, or much pain--my main symptoms are sleep disorder, cycles of fatigue, some mild to moderate fibro, probably mostly mild compared to others (never need a painkiller) but mainly the feeling that there is a wall I can't push past--that my system has very limited reserves. However, when I did ozone, and started killing off candida, I felt lousy as could be. So I know to get totally through this I have some tough times ahead.
Anyway, I'm mostly on a different path, but sometimes get caught up in the discussions here. I feel sorry for people. I was just contacted today by a girl I grew up with--I hardly remember her but she remembers me. She saw the article Byron & I wrote on hyperbaric. She is completely disabled from lyme, to the point where driving from our suburb only 45 minutes north of Chicago, to Chicago to try a mild chamber, is going to be very difficult for her. I feel really good actually, that article we wrote has changed some people's lives already. It was my answer to the flack I got on lymenet--and my own ethical sense that I had to get the information out there to help people. And it has. I'm happy about that.
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