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General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> Flu - tamiflu http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1355603850 Message started by Julie on 12/15/12 at 08:37:30 |
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Title: Flu - tamiflu Post by Julie on 12/15/12 at 08:37:30 Hi, I thought I would re-post this in another category. Can anyone tell me about any reactions to tamiflu? I have the beginning symptoms of the flu and wondered if I could take it. Thanks for your in-put. |
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Title: Re: Flu - tamiflu Post by DeborahW, Founder on 12/15/12 at 15:57:27 Sorry, never tried it. Anyone else???? Chime in right away please if you have any input. |
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Title: Re: Flu - tamiflu Post by PamH on 12/16/12 at 04:53:08 Sorry, I'm no help either never took it. I was told though NOT to get the flu shot. |
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Title: Re: Flu - tamiflu Post by Joan on 12/16/12 at 13:02:31 Pam, Who told you not to get the flu shot and do you know why they said it? I was told to definitely get the flu shot, as it's a killed vaccine. The reason is that flu viruses can send the immune system into orbit and cause damage by elevating mediators. At least on me, the vaccine didn't cause any more than a few aches the first few days. Nothing Tylenol couldn't help. I've also been told to get the shingles vaccine, but I'm concerned about doing it because it's a live vaccine. I probably will sometime, though. |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/16/12 at 13:39:57 I have looked up every ingredient in the flu shot, I have opted to NOT get it. There are 8 versions of the flu vaccine out there and EVERY one has mast cell degranulating agents in it. I've been studying vaccines for months and can refute every reason for getting it. Natural health minded experts all advise against getting flu vaccines based off the shoddy science provided by the vaccine industry compared with well founded health concerns. Europe has now just taken flu shots off the market due to these same concerns. Since I am not a doctor, I can NOT make health recommendations, but I can share what I have learned through my own research. Don't rely on US government based propaganda, but look into the depth of vaccine injury blogs, posts and recommendations for your self. Did you know the US has an entire court system only for vaccine injury, yet a law prohibits anyone from suing vaccine companies? Vaccine injury cases are paid out through a compensation fund, funded by all US vaccine manufacturers so NO guilt is ever assigned to a particular vaccine. Oh I could write a book with what I've learned. But from a mast cell perspective, I am very leery what foods I eat, what meds I take, what personal care products I use, and NOW what injectable medications I allow into my body. I have reviewed the ingredients of every vaccine available in the US, and will not get any vaccine, until I find one without antibiotics, mercury, aluminum, formaldehyde, rat poison, dyes, sterility causing agents, toxins, carcinogens, artificial sweetners, mutagens etc. But don't rely on my words, do your own research and decide for yourself with an informed decision making process. Until you tell me that your mast cell specialist reviewed every medication ingredient in a particular vaccine and found a version without known mast cell degranulators and polysorbate 80, which is KNOWN to cause anaphylaxis in healthy individuals, then I will continue to research looking for better ways to help my immune system that doesn't have unforseen consequences. Oh, did I mention that I have a great uncle who was paralyzed the very day after a flu shot in 1976? He is one of the thousands of unfortunate souls who got guillain-barre (GB) syndrome that year. Look it up and then read the package insert of every potential vaccine you plan to take, GB is an accepted side effect of the flu vaccine. I am one of those who reacts with every vaccine and now I know why. My best wishes to you to find health, Lyn |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/16/12 at 13:46:39 Julie, Here are the ingredient in Tamiflu: TAMIFLU (oseltamivir phosphate) is available as capsules containing 30 mg, 45 mg, or 75 mg oseltamivir for oral use, in the form of oseltamivir phosphate, and as a powder for oral suspension, which when constituted with water as directed contains 6 mg/mL oseltamivir base. In addition to the active ingredient, each capsule contains pregelatinized starch, talc, povidone K30, croscarmellose sodium, and sodium stearyl fumarate. The 30 mg capsule shell contains gelatin, titanium dioxide, yellow iron oxide, and red iron oxide. The 45 mg capsule shell contains gelatin, titanium dioxide, and black iron oxide. The 75 mg capsule shell contains gelatin, titanium dioxide, yellow iron oxide, black iron oxide, and red iron oxide. Each capsule is printed with blue ink, which includes FD&C Blue No. 2 as the colorant. In addition to the active ingredient, the powder for oral suspension contains sorbitol, monosodium citrate, xanthan gum, titanium dioxide, tutti-frutti flavoring, sodium benzoate, and saccharin sodium. http://www.gene.com/gene/products/information/tamiflu/pdf/pi.pdf Best wishes, Lyn |
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Title: Re: Flu - tamiflu Post by PamH on 12/16/12 at 15:23:27 Joan, My specialist is the one who told me not to get it. I am sure it is because of the inactive ingredients. I react to so many things that it is better not to have it. (I never got them before I had mast cell issues) Thankfully a perk to the crazy mast cells for me is, I haven't been sick in 2 years! (knock on wood) They attack everything! My biopsy sight even "overhealed" according to the doc. :D The ingredients in the Tamaflu are scary!! Tons of salicylates!! |
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Title: Re: Flu - tamiflu Post by Joan on 12/16/12 at 19:40:22 That makes sense, Pam. I had no idea how much unnecessary stuff is in the shots. I'm sure I've been told to take it because my mast cells over-react to viruses, so I get a double whammy. Sick from the virus and then much sicker from the mast cells. Wish I wouldn't get sick for a couple of years! |
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Title: Re: Flu - tamiflu Post by DeborahW, Founder on 12/17/12 at 14:41:40 I was at a conference several years ago with Dr. Castells and Dr. Akin among other masto specialists. They were adamant that we mast cell disorder people should get a flu shot and a pneumonia shot because those 2 illnesses could be far more dangerous to us than the side effects. Of course, they were talking in generalities, and everyone has their own specific situations. Ever since then, though, I have made sure to get a flu shot (and I did get the pneumonia shot, which is only done once....and perhaps repeated 10 years later.) I will say that when I got my flu shot mid November this year, I (for the first time ever) did react to it. I did not notice it right away, but later that afternoon just felt not well and had that extreme fatigue that is mast cell related. I didn't feel great the next day either. I also had an itchy arm and red rash around the injection site and a month later it is still a bit itchy. I have never had this reaction before, but every year that vaccine is different. So, there must have been something in it that bothered me a bit. Would I still have gotten it if I had known I would react? Yes, because the flu is much worse, and I know how to handle my mast cell reactions. |
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Title: Re: Flu - tamiflu Post by iamnotalone on 12/17/12 at 16:43:41 Just my Two Cents; I haven't gotten the flu shot in a few years, but Deb, you gave me some food for thought. Will have to see what my allergist thinks. As for Tamiflu- Thanks Lyn !!! I have been wondering about that- sounds like a lot of "extras" in there that just aren't neccessary ! WHY do they do that ? Do we really need extra flavoring & color ? :P lori |
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Title: Re: Flu - tamiflu Post by Joan on 12/17/12 at 19:37:30 I was told that titers should be checked if I think I need another pneumonia shot. Titers measure the level of immunity still present. If they're still high, I won't need another shot then, but should have them checked every so often after that. I also felt a little tired after my flu shot and a bit "off" for a few days after. I took Tylenol, which helped, but it wasn't very bad anyway. |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/17/12 at 21:27:10 Let me throw this out there. As a mast cell patient, we analyze every morsel of food, review ingredients on packaged foods, look up histamine and salicylate content in non-processed foods and personal care products, as well as review our every itch, flush and sensation against other's itches, flushes and sensations on the forums. We completely turn our lifestyle upside down to eliminate our triggers. Some of us have disected the various lists of mast cell degranulators, read every journal article, post and website mentioning the words mast cell, degranulation and anaphylaxis. And yet, many of us have openly accepted a prescription for any medication or OTC recommendation, without considering the individual ingredients or comparing those ingredients against the known mast cell degranulators. Many of us have figured out that these very ingredients make us react/sick, even though these medications are often considered appropriate mast cell medications. But many keep chasing the invisible--Is it a food allergy? It is the weather? It is my period? Is it OAS? Is this veggie a nightshade? The we drasticly alter our diet, and eliminate any food that makes us react, often sacrificing our basic metabolic minimum requirements, when in fact we are chasing these symptoms with the very medication ingredients that is potentially adding to our overflowing bucket, making us degranulate and keeping us in this vicious cycle. While any virus, bacterial or yeast infection is known to aggrevate mast cells, if our immune systems were balanced, then our own Killer T cells could easily handle and erradicate these worrisome viruses, bacteria and yeast bugs, before they attach and become infections. I'm not making this up, this is just Immunology 101 stuff. Mast cell degranulation, allergic IgE and other immune reactions occur when the Killer T cells are supressed making the B cells immunity elevated or the B cells are elevated then causing the Killer T cells to be lower (chicken and egg scenario here). But this imbalance allows for immune dysfunction. And medication, including vaccines, comes with unintended consequences, as they alter basic functional biochemistry. Vaccines in general, and specifically the 8 versions of the flu vaccine, come with a higher risk to those with immune system imbalances. Read the package insert, also known as the prescribing information for the vaccine you plan to take, preferably BEFORE the injection. It states that this product is contraindicated in any individual with hypersensitivity to any single ingredient. Hypersensitivity is not confined to anaphylaxis, but refers to inducing immune reaction. And since we can't always control our mast cell reactions, I'd say that this is something to consider with informed decision making. Vaccine experts are appalled at the way in which vaccines are distributed and administered in this country. 1) For example, there are 8 different flu vaccines in the US but yet NO ONE knows which version they are injected with. 2) This information is not readily disclosed, nor is there usually access to list of written ingredients list and their function at the time of injection. 3) And most aggreciously, this injection is unlikely documented in the personal medical record if administered through your place of employment or at a free clinic or outpatient pharmacy. So how in the world would anyone even consider these reactins to be due to a recent vaccine? 4) Even more scary, is that these places will typically not have a crash cart and allergy emergency kit available for immediate adverse medication reactions. 5) And lastly, In the US, any medical procedure, intervention and medication administration with a higher than minimal risk is required to undergo Informed Consent, where a physician is required by law to discuss the risks, benefits and alternatives with the patient or guardian prior to that procedure, intervention and medicaiton administration. This scenario can be invoked for a specific procedure (like surgery, biopsy, or intervential procedure) or based off of a specific patient poplulation, like those with history of anaphylaxis or mast cell disorder. Statue requires that this interaction is documented in the medical record and signed by the patient that this interaction has occured. This falls under individual state law as well as federal statute. If you are contemplating getting a flu vaccine, I would highly suggest only having your injection performed in a medical office or facilty where they document this information in your medical chart and have immediate access to emergency equipment. I suggest finding out ahead of time, which version you will get, printing out a list of ingredients, looking up the individual ingredients and have an informed discussion with your physician by discussing the actual ingredients and risk to your condition. I would then ask about premedicating or if you should defer the shot until your reactivity has diminished. I would specifically discuss the impact of having mercury or aluminum administered and how this impacts your immune system. While there are strategies to limiting mercury or aluminum exposure, you can't even consider these strategies if you don't know which shot you are going to get. Some flu vaccines offer thimerisol free or low dose thimerisol options. Single dose vials will not contain the preservative thimerisol, which contains about 50 percent by volume mercury, the second most toxic chemical element on the planet, next to uranium. Some don't have mercury, but contain aluminum, which is just as toxic ot the immune and neurologic systems. And then there are the other scary ingredients. I don't set out to upset the applecart, but my goal is to inform anyone willing to listen on topics that may impact other masties. If this can help someone, then I've done what I set out to do. Best wishes, Lyn |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/17/12 at 21:35:30 Deborah, I'm not sure if yo knew this but while the flu virus in the 8 versions of the US influenza vaccine may different each year, the inactive ingredients stay the same. The CDC recommends the specific flu virus blend (this year 3 virus strains) and the manufactuers just plug in those viruses int the same inactive ingredients formula. I looked at lists from 2010/2011 and 2012/2013 and they are identical. Lori, Well, my best answer is that these ingredients are cheap and that NO ONE is making then use wsafer ingredients in the flu vaccines. Some of these ingredients have already been weened out of the other vaccines, due to saftey reasons (only 4 childhood vaccines have thimerisol/mercury these days). Many of these ingredients are used to tweek/piss off off your immune system on purpose so it can get the immune system to react to the virus. Take care, Lyn |
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Title: Re: Flu - tamiflu Post by DeborahW, Founder on 12/18/12 at 01:23:36 Well it's good to know, Lynn, that certain ingredients stay the same in the flu vaccinations. For me, personally, that is good news as I have never reacted to it except for this year. So I will continue to get them each year. While I understand your concern about the vaccination, I feel that you are missing the point that the flu can be fatal, especially in people who have medical conditions. This is the reason that the top experts have recommended always getting a flu shot. It is also important to remember that we are all so different. You mentioned that we all analyze every ingredient and everything around us to identify our triggers. That is a big generality, and I don't know of any mast cell patients who analyze this. They remain aware and pay attention, but it is rare that I read someone has gotten so specific on their investigation. I actually would say that most mast cell patients don't. I definitely don't. With a diagnosis of being idiopathic, anything goes with me, so technically I could react to anything for unknown reasons and the next day be fine with them. I definitely have a long list of things that continually trigger me and I stay aware to avoid them. I don't turn my life upside down to learn about everything I might come into contact with, though. That has nothing to do with the flu shot discussion, I just wanted to clear the air among the readers here so that they wouldn't become alarmed if your description of daily investigation doesn't match their own daily lives. Not saying one is correct over the other. Just saying that we are all different and thus will behave differently in managing our health. |
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Title: Re: Flu - tamiflu Post by redbird on 12/18/12 at 04:14:34 Ms. Deb... wanted to add just a little note to your discussion...not only are we very different ...also in our reaction to things just my thoughts redbird |
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Title: Re: Flu - tamiflu Post by PamH on 12/18/12 at 08:56:09 I want to thank Lyn for giving us valuable information to make an informed decision. Unfortunately I am the person you discribed Lyn. I have studied so much, but with purpose. I have really helped myself. I have discovered many of my triggers through research. I can't depend on my 20 min. doctor visit to do that. My doctor gave me a few papers on things that could be causing my triggers, but honestly I did the research. He pointed me in the right direction and I had to do the work! And yes, my life has been turned upside down, I can't go where I want, I can't use the soap I want, I cant even use toothpaste every day...but I know why because I have read everything I can get my hands on. I do have to analyze everything I put in my mouth. I hardly ever buy prepackage foods. I also have to analyze my environment. It is truly exhausting! Hopefully it will not always be like this. If I have read it once I have read it a 1000 times that we all react differently to different things. So each of us has to make that decision to get or not get the flu shot. Having a mast cell expert tell me to get a flu shot is not going to take away the anaphilaxic reaction once I get it. I have to do whats best for me. You just have to do what best for you. |
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Title: Re: Flu - tamiflu Post by iamnotalone on 12/18/12 at 17:34:14 WOW; Lots of food for thought on this one ! :-? Lyn; you bring up some very important points re: the flu shot. Sometimes in my masto fog, I don't see the whole picture. Specifically in regard to the flu shots. They are so coveniently provided at pharmacies & even grogery stores now ::). Would there be someone there who would be able to handle a crises with say oh, a person with masto ? I am allergic to feathers, down, etc. I remember wondering if that would affect me adversely each year before I stood in line for my flu shot administered at school by a nurse (before my diagnosis). Yes, I have asthma. Yes, my former allergist had advised me to get the shot. Yes, I struggle with the decision every flu season Anyways. :-/ Still thinking... lori |
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Title: Re: Flu Shot Precautions Post by Joan on 12/18/12 at 18:03:47 I respect the research people on the forum do and have learned a lot from it about how to be safer in my everyday life. There's no question there are potential hidden dangers for some mast cell patients in vaccines, medicines, cleaning products, etc. When we take any medicine in any form, it's also important to remember these decisions must be made with risk vs. benefits in mind. Common sense would be to use all reasonable caution, but not to postpone or refuse a potentially life-saving procedure or medicine because of fear. The flu shot may not be life-saving for everyone, but it is for some people. Other decisions will need to be made in a variety of situations throughout our lives, including procedures to follow to be safe if a surgery is needed, if radiological studies need to be done, if chemotherapy is necessary. Unfortunately, we have a disease that can increase our risks to some degree in these and other instances, but it doesn't need to negate the benefits if we're cautious and plan ahead. As for the flu, if you've had complications from flu in the past, mast cell-related or not, a shot can be given in a way to minimize risks for many people. Still, some people may be too reactive to take one. This should be a decision between doctor and patient. I've posted part of this before, but for those who are concerned about the potential health threat from flu and who want to try a flu shot, here are some suggestions that might help you be safer. The pre-and post-shot medications also apply to other immunizations, but do double check with your doctor.
For more information about Guillain-Barre' Syndrome, which Lynn mentioned, here is a link to the CDC website that explains the syndrome, it's causes and effects. I haven't seen anything in print that would indicate that mast cell patients are more susceptible to Guillain-Barre' than the general population, however, it's a good question for a mast cell expert. [url]http://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm/url] |
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Title: Re: Flu - tamiflu Post by DeborahW, Founder on 12/19/12 at 01:35:03 Excellent post Joan! Would you mind copying this post and starting an additional thread with this post? I think it is so helpful, that we should have this information out there for people to easily see! |
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Title: Re: Flu - tamiflu Post by Joan on 12/19/12 at 05:46:15 Thanks! I made a few additions/alterations and posted it as a new topic under the General Mast Cell Disorder Discussion topic. If you'd rather have it someplace else, feel free to move it. |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/20/12 at 17:56:15 The British Medical Journal ( BMJ) has alleged that pharmaceutical giant Roche is deliberately hiding clinical trial data about the efficacy of oseltamivir ( Tamiflu) in patients with influenza. The journal says global stockpiling and routine use of the drug are not supported by solid evidence and alleges that Roche concealed neurological and psychiatric adverse events associated with the neuraminidase inhibitor drug. In an open letter from Fiona Godlee, MD, editor-in-chief of BMJ, to Professor John Bell, FRS, HonFREng, PMedSci, Regius Professor of Medicine at Oxford University in the United Kingdom and a Roche board member, published online October 29, Dr. Godlee reminds Bell of concerns that were initially voiced in 2009 about the reliability of Tamiflu research. http://www.medscape.com/viewarticle/774548?src=mpnews |
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Title: Re: Flu - tamiflu Post by MarciaB on 12/21/12 at 01:48:19 It's great that more whistleblowers are coming forward but imho it's not happening fast enough and it's not effective. I just learned about a book yesterday called "Unaccountable .. ". It's about the incompetencies in hospitals. We need to do something to stop the incompetence in the health field rather than write about these problems. Based on what I've learned over the last 7 years, I've seen more incompetence than competence in this field. The info / research on cfs alone could be best summed up on a saturday nite live sketch. Sure some of this is profit oriented but some is just from medical professionals allowing themselves to be guided blindly by big pharma or big supplement. Big supplement is just as bad as big pharma only they're not being regulated. I have to wonder if part of the entrance exam into med school includes having students listen to a lecture that's made up of completely fabricated medical terminology and full of multi syllable words and only those who pass without questioning it get in. Afterall the goal seems to be learning multi syllable words. ; ) Things are definitely getting better tho. The growth of GF industry proves what patients can do just by financially supporting an industry. The move towards integrative / functional medicine is growing. What's disappointing is that whistleblowers have been around since the 60's at least and yet our grocery store shelves are lined with toxic foods. Sorry for the rant ... Maybe I need to write a book. Lol |
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Title: Re: Flu - tamiflu Post by ruth on 12/21/12 at 10:48:01 Marcia I think it is really unfortunate that you have had such negative experiences with health professionals that have left you so cynical and mistrustful. I know many of us have negative stories to tell, but we also have very positive experiences of wonderful doctors who may not have all the answers, but genuinely care and have great compassion and do the best they can. Unfortunately they are human. They are not God, and unfortunately they dont always have the answers we need. I have walked away from numerous doctors in the past few years, regretting yet another waste of time or disappointing consult, and still trying to find answers for my son, but I try not to 'throw the baby out with the bath water'. I still need the support and expertise that they potentially can give us, and take it gratefully when I find it. Maybe I'm naive but I have experienced many more health professionals, in various contexts, who are remarkable individuals with genuine motivations for doing what they do, as well as brilliant minds and the expertise to make a huge difference in the lives of their patients. I hope you have the privilege of experiencing such caring and competent medical support one day. Ruth |
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Title: Re: Flu - tamiflu Post by MarciaB on 12/21/12 at 12:45:19 Hi Ruth, I'm definitely 100 % cynical now but I just learned it over the last 7 years. I was 100 % doctor worshiper for the first 50 years of my life and it only made me sicker. Not to mention the sarcasm I experienced from my own doctors. I have had some positive experiences with doctors. I have 4 doctors now that I trust. I was sexually assaulted by one of my doctors when I was younger and had a similiar experience in the last 10 years. I haven't reported these incidences to any officials yet. Most people who know me know this tho. I was told that the first dr who did that to me was doing it regularly so it was semi acceptable. And it would ge my word against his. I tried to report the second incidence but was advised by the local ama to tell this dr that what he did made me uncomfortable. I just hung up the phone in disbelief. Even after that I trusted doctors as long as there was a nurse in the room. So it's only in the last 7 years after I started learning the truth about our health care system that I became cynical. Fwiw tho I probably should've toned down my cynism for this forum. I suspect those who've been dx with cfs only to find out on their own that they had something else understand where I'm coming from. The official info on cfs is a testimony to the incompetence of those involved. Whoops ... Did it again. ::) I'll try to keep it under control. Tc ... Marcia Eta. It just dawned on me that my work background is probably responsible for my lack of sympathy towards incompetence. I was a programmer analyst for years and we had no sympathy for those who repeatedly screwed up. We all knew who could do their job and who couldn't. I suspect the medical profession is the same and would like to weed out the ones who aren't performing. This may seem harsh to some people but to me it's just being realistic. Weeding out the non performers could really open up a healthier environment for medical professionals and patients. |
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Title: Re: Flu - tamiflu Post by Doozlygirl on 12/21/12 at 15:52:15 Marcia, I am so sorry that you were victimized by a trusted medical professional. This is beyond horrifying, and then have something similar happen to you again. I am angered on your behalf. This is enought to rip the trust right from you, yet alone all the struggles you've faced finding a diagnosis. I have had caring physicians along the way and only a handful or horrible evil ones. But I've also taken the long road to understanding what is going on in my own body and long ago stopped blindly trusting that these caring physicians could solve my health woes within the short time allotted to me during my appointment. As i began racking up major medication adverse reactions, it became easier to see I needed to move away from that paradigm. I began to take responsiblity in my own hands and started on this long mission of finding health. On top of the incompetent or incapable physicians, nurses, technologists, technicians and others out there, the entire healthcare system is flawed in the US and this business model makes it extremingly difficult to get adequate (not even stellar) help concering chronic illnesses. Genuine care and compasison only go so far in a flawed system, where those caring physicians pay a large price to give that compasisonate care with less quota numbers. And healthcare administrators know it, but the system is too big to change. Chronic illness is a business and once I figured that out, I could do a better job advocating for myself. Marcia, sounds like you are also better able to advocate for yourself than previously. I wish you the best, Lyn |
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Title: Re: Flu - tamiflu Post by MarciaB on 12/22/12 at 00:51:52 Thanks lyn, While it's difficult to discuss this topic I think it's important for other patients to know that they're not alone. Looking back, I wish I'd pursued legal action with the doctors who took advantage of me but even today I'm not sure the stress would be worth it. I was too stunned and humiliated to even speak as I left the first doctor's office. And I was too sick with celiac disease and weight loss to fight the second offense. The conversation I had with the representative at the local ama didn't instill a sense of confidence in their commitment to helping patients either. Why would I want to talk to someone who'd just blatantly assaulted me ? I'm much better prepared to advocate for myself at this point but find it unnerving to think I have to be prepared to fend off emotionally unstable health professionals. It's ironic that these professionals want to dx patients with mental illness when they think nothing of physically or emotionally abusing patients. Back in 2005 when I started by healing journey, like you I had no idea where it was going to lead me. And like you while my current doctors have been unbelievably helpful, I've needed to take the reigns myself. I've realized that even with their advanced medical backgrounds, they can't predict how my body will react to any foods, meds or supplements. Good luck with your journey. Imho, we're the lucky ones because we know about all those toxins in our environment. Tc .. Marcia |
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Title: Re: Flu - tamiflu Post by Lisa on 12/29/12 at 02:23:21 I don't want to get too deeply into this and I am indeed sorry for you and anyone who has experience any form of abusive behavior from a physician. It is a total break of trust in doctors and totally undermines the patient's ability to trust their guidance. I think that we all have had some kind of encounter, whether it be out and out abuse, or just the disregard of a doctor who is too afraid to admit his/her own humanity of not knowing everything. Yet, I must say this in defense of physicians around the world. I am American by birth and lived in the States for 30 years prior to moving to Brazil as a bride. My experience and cultural upbrinding with doctors is from my birth and youth in the States and so my entire cultural identify as to physicians is American. According to French anthopologist, Clotaire Rapaille, in his book the Cultural Code, Americans look at physicians as Heroes!! This is a VERY IMPORTANT viewpoint for when they don't meet up to our expectations, they fall a very hard fall from their pedestal!! They are human and they err as much as the rest of us and we allow for one another to go OOPS from time to time but we hang physicians from the highest yard arm if they even whisper such a word!! American doctors are even more on the defense due to the fact that they are so easily sued by patients who don't realize the ramifications of their actions and are only thinking of revenge and greed. The vast majority of doctors do not intend harm to their patients and they honestly try their very best to do right by their patients within the limits of their knowledge. This is why some doctors will not refuse a patient whose illness they don't know or they will say "emotional" or "psychsomatic" in order to pass off a patient whose illness they are not able to diagnose or manage. Why? Because they are trying to mess up the patient's mind? NO! But because most patients will get unreasonably angry if a doctor refuses treatment and they can even be taken to court if the patient were to press charges for I believe doctors are not allowed to refuse a patient by the hipocratic oath, if I'm not mistaken. But in saying psychosomatic, the patient is then given an option to push on towards a pychologist/pyschiatrist and it will release the doctor from obligation to treat the patient in a manner which puts him at risk if he makes a mistake. This is why doctors don't often want masto patients cause they don't know masto and it puts them into risk. If you were a doctor, would you want yourself as a patient?! I sure wouldn't!!! I'm a high mantenance patient and I don't even like having to deal with my illness for how complicated it is!!! Yet, does this excuse of for writing off our all doctors just cause they don't know or some have not treated us the way we need? NO!!! I've been through the mill with doctors cause my symptoms came up with a hysterectomy and a great many doctors, almost all males, could not see the symptoms for the hysterectomy and I was accused of serious mental health problems by any doctor who did not understand masto or did not recognize my symptoms or who did not know me prior to the disease coming out of hiding!!! I could easily have done like Lot, sit down in a pile of ashes, rip my clothes, curse doctors and GIVE UP!!! Sorry, that's not my style either!! So, what did I do? I got up! Dusted myself off! Realized that the guy/girl was a complete JERK and MOVED ON!!! For every 1 Jerky doctor, I found 10 GOOD doctors and 1 EXCELLENT doctor!!! I've moved on and found the help I needed and from doctors who have done more to HEAL any wounds my faith in doctors had suffered!!! And what about my faith in this situation of vaccinations. Well, I think you have to deal with this on a very personal manner. I don't think that we can justify throwing vaccines totally out the door just because there are some things going on. I think that the long-term track record of saving lives way outweighs any situations which are going on right now. I've heard some of the conspiracy stories and yes, they totaly undermine our faith in our medical association as regards to vaccinations and I can't help but feel that something is very wrong with these theories!! The fruit is bad for I can't believe that high level doctors, like Dr. Castells, who is a renoun immunologist would continue supporting for masto patients to be taking vaccinations if she felt that something were wrong with them!! She personally has too much to put at stake and I've spoken with her a few times, enough to know that she is one of the most caring masto doctors we have out there!! She has personally fought to get the MCAS diagnosis passed going up for years against the heavy weights who were totally against MCAS! She's the only female authority we have out there and her heart is for us patients and she's not going to encourage that we face vaccinations if she felt that there was something dreadfully harmful to us. She knows that some of us do react to the vaccines, but I honestly don't thing that she feels that there is something inherently wrong with the vaccines that we should not be taking them. And she has said to several of us on this site when questioned, Yes, you should take the flu vaccines. Yet, again, this is a personal opinion and a personal situation and I think that if you are personally questioning the medical association itself and have doubts then this is important that you also keep this to yourself due to the damage of undermining the faith of another person. Again, I've heard enough of the conspiracy theories that yes, I understand the concerns, but this kind of talk, without real proof, is dangerous and affects the lives of others and since none of us are working within the medical associations involved in vaccines, we have no way to know what the real story is nor the truth. But to undermine the faith of another patient, especially when there is a track record of generations of healthy people who had their lives saved by vaccinations, I don't feel it's right to bring this kind of controversy to the site. This must remain private. I hope you all understand. Thanks! Lisa |
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