I admit, I get impatient with the Mito Specialists at times, I think they "could" do more.
What I often forget is, if they did do more, who would believe them?
Scenerio: Pretending that I am the Specialist. My first appt of the day is a family of 6. Mom and all the children have mild and suspicious symptoms, but one child is more then moderately affected. After all the tests clearly Mitochondrial Disease but no known mutation.
The Mom is worried about her other children plus is considering another pregnancy and asks me "Is there ANYTHING I can do to prevent my other children from getting sick?"
1) What do I tell her? "Mito has no cure, just live as normally as you can because you have no control over whether you get sick or not." This would be the PC response. Pretty standard and it really ticks me off that a Dr. see's a snowball coming and doesn't at least suggest the patient "might" at least want to step out of the way.
2) Or do I tell her "You know, there is a lot of research in it's infancy that indicates toxins "might" play a part in triggering Mito in "some" patients. Definitely a better response. Most importantly it addresses the possibility of prevention in the other children. It gives the Mom something to do in a positive direction. It reinforces that research indicates right now that we have unanswered questions about the cause.
3) Or do I tell her what I really want to tell her? " Here is a list of mito toxic drugs, avoid at all costs. Avoid or consider a change in vaccine schedule. Here are a pile of research articles on Round Up, fluoride,flame retardants, pesticides, and more that indicated humans may be causing more disease then we are preventing. " That you may have to change your lifestyle. For some, Mito is Man Made.
Number 1 seems to be the most common response. It really steams me. I think because it is the "easiest" response. Most American's trust that if our government says a drug, pesticide, herbicide is safe and sold in the local grocery and drug store it is safe. I suspect a lot patients would disregard any advice to consider cutting back on the drugs(script and OTC), or toxic cleaners or to avoid processed foods(fast foods, packaged, enriched,MSG, non-organic, GMO, food colors and more). Most American's would probably think the advice was whacky- sad but true. What Dr. is going to take hours to teach a patient family about toxins? About foods and why they should avoid certain chemicals? They don't have time and time is money. So they refer them to the nutritionist. (pass the buck) The nutritionist will probably tout the beauty and perfection of the food pyramid. Or recommend lots of fresh fruits and veggies. Likely will avoid openly encouraging organics. If the child/patient doesn't tolerate it, well then time for an elemental formula which is full of garbage. So they refer the patient to the GI who doesn't care about what is in the food but that the "plumbing" isn't able to digest it... Some patients WILL GET WORSE no matter what, but there are some patients like Abby(she isn't the only one!) who can stabilize by avoiding toxins.
Number 2 is what I think should be the "expected advice". There is now enough research out there(been out there for many years and been replicated) that there are many toxins(chemicals,medicines,cleaners etc) that have been shown to negatively impact the mitochondria. I don't think there are any studies that absolutely claim that they are the "cause"(with the exception of a number of medications that are proven to cause mitochondrial damage), but isn't it enough that we know they make our mitochondria unhappy?
Number 3 is what I really wish they would say, I also recognize they simply cannot. Something called "Science Based Medicine" get's in the way. Drs. who are skeptical of vaccine safety are often ostracized. They aren't allowed to recommend unless it has been cleared by the Government, FDA, CDC, Medical Boards- their hands are tied. I cannot imagine being a Dr. and feeling pretty strongly based on the evidence that they should be giving out advice that could prevent, but they aren't allowed. If they did give such advice they might not be able to help patients at all. They could lose their jobs, their reputation.. their efforts they have funneled into research to help us.
I have a lot of sympathy now for Mito Specialists. After a day in the office they get to go home at night and wonder if that Mom when she gets pregnant will take anti-nausea meds, anti depressants, anti- anxiety, motrin, tylenol, antibiotics, get vaccinated early in the pregnancy, eat McD's daily(1/3 of american children eat fast food daily), get their hair colored and nails done, eat food saturated in hormones, antibiotics, chemicals, do some yard work spraying round up to remove weeds instead of pulling, spray the house for bugs .... If I were a Mito Specialist it would be agony and true purgatory to bite my tongue day in and day out knowing odds are in a few years they will have more and more and more patients and they aren't allowed to say a thing.
Maybe I am wrong, maybe a lot of mito specialists think the toxins, meds, vaccines, fast food are truly harmless and thus they are giving good and sound advice.
I think they are smarter then that though... daily the skyrocketing number of sick children. This generation of children are the sickest in a few generations. Why? Why are so many of our children chronically ill? Random? I think Not.
I guess I could not be a Mito Specialist. Either I know too much or I simply don't have the self control... I couldn't do it.
Thank your Mito Specialist this week. They are a small population that have fought and fought to have the disease and suffering recognized. They have fought for years when even the Medical Schools are so outdated they still aren't teaching. It is a rough and good year for our Specialists. At least that is the way I see it if I were a Mito Specialist. On one hand we have new genetic testing so they can "prove" that it is "science based medicine". On the other hand less then 30 percent of Mito Patients are "absolute". So, 70 percent of their patients are still in limbo which means 70 percent of their patient load(for those still willing to see patients who aren't genetically identified)will continue to force our Mito Specialists to bite their tongues, to read and research day in and day out.. To watch more patients line up at their door when for some they could have been prevented. How much longer can the question be asked, "If it isn't genetic, what made me or my child sick?" and not be answered when odds are for at least some we already know the answer.