Disease is more profitable

[troysmom]

I am currently reading Jenny McCarthy's books about her son's journey with Autism.  I am reading the books not because of the particular illness/disease but because it helps me to read about other mother's and the journeys they are on with their children and their health.  In her second book called Mother Warriors there is a line that says, “Not in the united states, the medical community would discredit the information because disease is more profitable”

That sentence connected me to so many moments in my own life when talking about AP, although antibiotics is still a a medicine, still belongs in the medical field and yet we find ourselves defending ourselves time and time again.

How many time si have heard soemoen say if there was a way to fight this wouldn't all the doctors be raving about it, telling everyone, I mean as doctors it is their job to help people get better.

True it is their job, I don't believe all these doctors are being propelled by the greed of the pharmacutical companies, I believe many of these doctors believe in science, studies and facts.  They believe what they were taught in medical school. 

But there are many, many people propelled by greed, look at the tobacco industry, they had evidence all along about the health risk involved in smoking yet they continued to spend money to advertise and sell the products so they could continue to make money from it.

Maybe AP doesn't work for all patients, maybe diet and supplements don't work for all children with autism but it works for some, it should be added to the basket of possibilities to help heal and recover.

Why is the medical field making us fight so hard for own recovery.  With everything I have learned in the past 9 months I now feel so weary of doctors, I recently went to see a GI doctor for my son who has had on going stomach problems, I feel like she spent very little time understanding our situation and then prescribed him some medicine, she didn't take the time to explain the medicines, I had to ask direct questions, a year ago I would have accepted the medicine without second thought and trusted that the doctor knew what was best.

We have this belief that doctors know what is best for us and want what is best for us,  I trusted my son's doctors to give me ALL the information I needed to treat my son.  Only after my son's health took a turn for the worst this past year that I started to go outside of this circle of doctors and find my own answers, there are so many other options for my son, soemthing as simple as aquatic therapy could have been used all these years in addition to what the rheumies were doing.

I am not sure if I am more mad at the doctors or myself for not having taking my son's health into my own hands, I wasn't aggressive about finding my own answers, I just trusted the doctors to give me the information I needed.

If I could send one message to the world after having experienced this journey with my son it would be 'Doctors are only ONE tool in the tool box, use the doctors but also use as many other tools as you can.  This is your journey, you need to be int he drivers seat.'

For a while there I was so angry at our doctors I fired them all and had to start rebuilding our team of doctors, this process has taken me 9 months, during that time my son has been in limbo with his health, he has endured a lot of pain and suffering, he had to sacrifice a window of time in his life to all the symptoms in his body.  I made a mistake in banishing all the doctors from his life, I was angry and stubborn and I burned a few bridges along the way at the expense of my son's health and quality of life.

We are moving in the right direction now, we are building a team of doctors that we can trust, that are willing to work with us as a team rather then try and dictate us into their beliefs … but it has been a long and unforgiving process … big sigh

[whaleharbor]

I understand.  It's a difficult yo realize that you have to be your own medical researcher….that you have to fight for attention….that you really can't just trust someone's good intentions and training…that no one really cares enough to put the pieces together for you when they have the training.

Thank God for the Internet – I would have never discovered the possibility of AP and started to make my own decisions for myself.

God bless you as you help your son.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Trisha]

Though we are the same, we are different…we're individuals often with individual needs.  One treatment does not fit all.  Some help most, some help a few, some could be downright dangerous depending on our unique circumstances. 

I, too, believe that there are many greedy, ignorant, uncaring people to whom we look to for help such as doctors.  My former rheumy told me that his wife said:  “Can't you put all of your patients on 'Remicade'?”  The reason he told me this was to accent how expensive the drug is and how much they, the Dr. & his wife, would stand to profit from it.  He also mentioned that he was going to buy his daughter a Movado watch for her birthday.  I just didn't want to hear it…it made me feel that his main goal in life was to make money, not help me to get well.  I, too, believe that there are those doctors who mean well but who go with the flow…basically that, as you stated, they believe what they were taught in medical school and don't go beyond what they've been taught.  My former rheumy always mentioned the FDA when it came to RA drugs.  Though the FDA has approved many useful drugs they have also approved many highly toxic formulas and I was annoyed that the doctor was constantly singing the praises of the FDA.  How many drugs have been pulled from the market 'after' they've downright killed people, and how many more will be approved that kill us a little at a time?

My eldest  daughter suffered from severe asthma as a child.  She was constantly in and out of the hospital and ended up on steroids for so long, at such high doses we could not wean her off.  She was given so many drugs, as we were young, nieve parents trying to do what the doctor said to make her well.  I could go on & on about the indignities she suffered and how she may well suffer in the future from all the toxic substances she was given but there's not enough time or space, nor do I have the energy, nor would you want to hear it all.  We ended up taking her to a hospital in Colorado (we live in NJ) for 6 weeks to wean her from steroids…it worked…and for that I am eternally grateful.  As good parents we always seek to do what is best for our children and so take solace in the fact that that  is exactly what you've been doing all along.  Being angry for the mistakes we've made is understandable, I've been there, but it doesn't benefit us to stay there.  You're on a better path now and you're educating yourself and we're all behind you 100%.  We'll still make an occasional mistake but that's life. 

If I could undo your dear son's disease I would…I so feel for the two of you.  May it help in some small way to know that we here at RB truly care.  My heartfelt best wishes to you both…..Trisha

[hotspur2904]

Hi Troy's Mum, your words struck a chord with me to say the least. I will find out in a couple of weeks if my cynicism is misplaced or not when I meet my rheumatologist to “sell ” her the concept of putting me on AP rather than anti-tnf therapy.  I hope I am proved wrong!

Wishing you and Troy all the best in your quest!

Simon

[Jan Lucinda]

I've read this before by other authors, unfortunately.

[TischSEB]

Hi Troysmom,

I feel very much the same about this journey and the numerous encounters with specialists. Looking back, it is terrifying to think of where we would be if we had listened to some of them (in a wheelchair, surely with irreversible damage). On the other hand, we have a good neurologist and PCP currently, at least willing to try AP,but we sifted through a lot of egos to find them.
Mostly disheartening, but a few glimmers of light.

[Author]

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