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

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!

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

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

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

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