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Wednesday, July 17, 2013

So the Dr. says a grim Prognosis, What do you Do?

I have noticed a trend in Mitochondrial Medicine. IF a parent or patient gets no Mito diagnosis, they keep searching, and looking for answers, but too often the minute a Specialist says, " your child has Mito, it is a grim prognosis" they believe it, they don't question and they don't get a second opinion- Why is that? Why book to see more Mito Specialists when the first or second don't find Mito, but if your first Specialist diagnoses Mito, they quit looking?

When patients are told by a Dr. they have cancer, what do they do? I suspect a huge percentage run for a second opinion, run for a third opinion. When a patient is told they have cancer and they cannot be cured- they run EVEN FASTER for a second and third opinion, Why is that?

I don't argue that Abby has a "Depletion" I understand and accept that it was found, but what I doubt is that there is no cure, what I doubt is that it could be the stem issue of all her issues. Until it is "proved" by second,third, forth opinions.. till it is proved by Abby getting much sicker- I don't believe it. After 18 years, I have seen many patients with Mito defy their 1st diagnosis, and many now that have found that though they have mito dysfunction, they found the primary or they found a way to manage the dysfunction and defy the original prognosis. I know many who have gone on to get second and third opinions to find out they did not have mito at all- but these patients are the minority.

In my mind I see Mito just like cancer- when you get the diagnosis, you have a TON of OPTIONS on how treat it, on how to move forward. If you would run for a second and third opinion with a grim cancer diagnosis, why wouldn't you run even harder with a Mito diagnosis?

Clearly part of the reason is there are so few Mito Specialists. Houston is a great example of a huge city and a woeful amount of Mitochondrial care or Specialists capable of handling the diversity of Mito patients- it is limited to the point every day more and more Houstonians and Texans have opted to travel for better and more appropriate care.

Another part of the problem is so many are diagnosed with Mito without a gene. Or have have mito findings in biopsy, but all the other labs are normal.. or the labs are wonky, but the biopsy is normal- the diagnostics for Mito are so unknown still, the only thing a Mito Dr can do is to use their experience to make an educated guess based on what they see in front of them. So, if a Mito Specialist see's mostly Leigh patients, odds are they are not experienced enough to spot MELAS or other forms of Mito- in the world of Mito Specialists- it takes a very good education, extraordinary intelligence, academic knowledge on top of experience seeing all the forms of Mito to truly be a great Mito Specialist, or the top of their field. We are learning about Mitochondria at lightening speed daily that the few Specialists we have are challenged to the max to not only diagnose and care for patients but to find the time to stay up on research. These Specialists are true hero's- I barely keep up with Abby, her food and our home so how they juggle a few hundred Abby's daily and continue to find the time to further their education- is awe inspiring to me.

I am not saying a patient doesn't have Mito that is diagnosed the first time out the gate, but I am surprised at how many will accept just 1 opinion about having Mito when you only have to go to the UMDF or MitoAction or google blogs to see there are so few absolutes. Everyday they are finding valuable new data about our mitochondria on how chemicals can cause dysfunction, on how mast cells can cause dysfunction, how diseases like diabetes cause mitochondrial dysfunction- it is clear that when the dust settles, we are going to find that many many primary disease processes can cause our mitochondria to not function properly. How many patients who believed that Mito was the key issue to the failure of their health or their child's health will find out in the next few years that Mito was NOT the primary, but just a symptom of something else?

Then once you have a diagnosis you have a zillion treatment options. Again, there are trends. I have noticed it is far more common to get a second opinion from a GI if the GI says No feeding tube then there is when a Dr. says YES- you need a feeding tube. Why is that?

Again, there are huge variables. The "Mito Protocol" is far from one size fits all. Secondary care is even sketchier..there are patients who have done worse when receiving the "popular" interventions, and some do better. Again, though even when things get worse, too few wonder, well maybe the treatment isn't helping and I should try something else. If I had believed that Mito was the ONLY cause of Abby's kidney issues her kidney's would be horribly damaged, but I didn't. I eliminated allergens and chemicals and her function is perfect and the only time her kidney's stress is when she takes chemicals(medications,vitamins,preservatives) by mouth or she eats allergens, or she gets over tired. We have found simple environmental changes(food, more rest,less exposure) have protected her kidneys far better then any of the more aggressive methods often recommended. It could be that depletion at work causing her kidneys to be hypersensitive, or maybe it is something else- fact is, we don't know. Since we don't know we don't throw in the towel. We are grateful we got a second opinion, it helped confirm that we do have some control over the damage without turning to medical intervention. It is more work, but what I worry about is the long term- not what makes sense today, or tomorrow. But then, I don't believe Mito will shorten her life- cup half full kind of person. What if 5 years from now they find out it is some micro bacteria they did not know about and cure it with a pill?(okay so I am reaching here, humor me) If I threw in the towel today and declared our efforts too much work and not normal, lived normally and just expected them fail, if they come out with a magic pill, it would be too late. Forever the optimist.

If a Radiologist recommended massive doses of chemo and radiation for breast cancer, I bet a lot of patients would get a second opinion..or if they recommend no treatment, you would likely seek a second opinion. Though we know sooooo much more about cancer, it is universally accepted among patients and Drs that there are many different ways to address the care and treatment of a cancer patient. Why not with Mito?

Frankly, I believe very little in absolutes and Mito at this point. I accept there was a depletion in Abby's biopsy. That is about all that is absolute though. Her prognosis is still unknown- there is no proof that it is primary besides 18 years of eliminating other diagnoses- and I know we still are NOT done eliminating other possible primaries. Maybe because of our very long journey, I have learned repeatedly that medicine often comes down to an educated guess. That medicine doesn't have all the answers. I have learned to appreciate the Drs. who admit they don't know it all, the ones who advocate to Abby and I that we shouldn't just close the door, or just accept. Our favorite Drs, the one's I think are the smartest are the ones who encourage us to seek second and third opinions. Their support to fight keep us working hard because sometimes interventions bring worse then no intervention at all.

I believe in the placebo effect for inducing improvements and I am starting to believe in the placebo effect can also cause negative and progressive symptoms. If you think you are dying, you probably aren't going to fight as hard. I do believe that the depletion is causing issues for Abby, but I don't believe it is the primary issue. Then I have gotten a few opinions.. the only thing that is universally agreed upon right now is something is wrong. We are finding lots of things, but so very few absolutes. Again and again I read stories of patients who beat the odds, who heal from falling from 20 story buildings, who's cancer goes away, who learn to walk again.. The cool thing is, with Mito there aren't a lot of "odds" yet, they don't know enough to predict the odds- puts Abby in a very good place. No absolutes, no prognosis.. That cancer center commercial where the patient says the Dr told her he did not find an expiration date anywhere on her- We relate to that- Abby's future hasn't and cannot be predicted.

So when you get a grim prognosis/diagnosis, do you get a second opinion? Or accept that just one Specialist got it right?


Laura said...

I never understood the people that just accept. They don't ask why, they don't ask how can I fix it, they don't keep looking for answers and connections. I hate asthma doctors. If you have asthma, according to them, there is no getting better, just symptom management. It is like speaking to a brick wall. I want to look for evidence of bacteria or fungal causes - it happens and certain things fit in his case( requires obtaining a sample of expectorant from deep in the lung - not fun, but could it yield answers????????). I just don't believe that asthma is the end of the story. Just as I know his mito dysfunction is not the cause of his problems, but one of the myriad of symptoms of toxic exposure.

Laura said...

Did you see this article???

A Victoria woman won a big lawsuit after being misdiagnosed with terminal cancer.

The Victoria Advocate reported that 54-year-old Herlinda Garcia was diagnosed with Stage 4 terminal breast cancer in 2009.

Then in 2011, after many rounds of chemotherapy, she found out that she did not have cancer.

Garcia filed a malpractice lawsuit against her doctor, who has since died.

According to the Victoria Advocate, a Victoria County jury found the oncologist negligent and awarded Garcia $367,500 in damages from his estate

Diane said...

That article about the cancer patient in Victoria, is exactly what got me thinking! :-)

Asthma is rarely idiopathic- yet, the Dr.s treat it as though it is- So frustrating!!! I am with you, find the cause, and fix it instead of drugging the symptoms- at least if possible.. for us allergies trigger asthma- and we can usually avoid the biggest airborne triggers(cats, horses, birds)..avoidance much healthier then a body full of chemicals.. :-) I know someone who had a chronic sinus infection for 2 years and developed asthma with it- at 43 years old! Turns out, he had a very rare fungal infection- took 2 years of antibiotics and firing Drs. before he found out- it could have so easily killed him..

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