More on Genetic Testing for Antidepressants and other meds

ali

 

 

This is a long post but what you read may help you out. I’m going back on the trail of researching and finding someone to do genetic testing on me for the best metabolized psych med in the event of my next bipolar depression due to antidepressant fatigue. My antidepressants last typically for a year or two and then poop out. I want to know, ahead of time, what would be the best pill to take. In the last five years, I’ve had incredible luck with Viibryd (2 years), Brintellix and Fetmiza. All of them worked in a week or less and lasted from 8 months to two years. Right now I’m on a combination of Wellbutrin (which I took effectively for a five year period starting fifteen years ago and Brintellix, which is a new drug that they don’t know exactly how it works but for me it was a ‘Rescue’ drug that I use for Code Black situations. I only take it twice a week.

Yes, I talk about meds a lot. Many people with mental illness are still sick, wondering if they are on the right medicine. this post is super long but it’s about a brand new way of finding ‘the right medicine’ that will work for you, as an individual, for your brain chemistry. I think it’s important.

 

Many of you know that I wrote a letter to my nearest location of a Mayo Clinic, in Jacksonville, Florida. I live near Miami, in Hollywood. My letter was ignored. At Mayo clinic, no matter what kind of health problem you go in for, genetic and enzyme testing is “the standard of care.”

No matter what, when you go to a Mayo Clinic,  they do genetic testing and enzyme testing to see what drugs, not what class of drugs-we already know if you need a a statin for high cholesterol for example, but which exact one, be it Lipitor or Zocor or Crestor…see what I mean? Narrowing it down to the exact brand or generic name.

It is important to narrow the possibilities or possibility down precisely to dose you with what YOUR body will metabolize the best.

The problem is that Mayo clinics aren’t taking any new patients and my request to be put on a waiting list when I tried both the Phoenix and Florida locations was met with, “We’re sorry, we aren’t taking new patients and there is no waiting list.”

This sounds like the VA. I wonder if they took pages from the same playbook. Sometimes the medical profession can be a cold, calculating place.

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Back to the topic of finding the right or a new psych medicine if you’re in a depression relapse,

If the doctor just ‘guesses’ what he thinks might be right, (or which new drug has been promoted lately by a drug rep in whatever means they promote-I’m told Golf trips are sometimes involved), there’s a chance that your genetic makeup and or enzymes will not break down the drug it will just freefloat in your bloodstream;  jamming up your internal eliminatory organs, increasing toxicity, negative drug-drug interactions and (god help us) chronic, incurable side effects, like the Tardive Dyskinesia I took. The drug I think caused it was not real effective for me, so my dose was jacked up beyond the recommended top end, and I think that was the last thing I needed-I needed a different drug. This is why I got sick with TD and will have it for life.

What is ideal is finding a drug that your metabolism (read enzmes) breaks down into molecules small enough to pass through the blood-brain barrier, so it can do its’ work and make you whole again. This is very important.

I’ve heard Medicare pays for this testing but right now, but not every doctor who takes the measly compensation of Medicare reimbursement wants to deal with the extra paperwork.

 

And the ones that will do it that I talked to want ridiculous sums of money, like 500 bucks, to administer the tests, read the results and then prescribe the best drug.

Furthermore those types of ’boutique’ psychiatrists are often the ‘all cash’ ‘no insurance’ and certainly ‘no medicare insurance’ type and don’t do hospital rounds anywhere. That means, that if you are like me, Bipolar I, and might have to go inpatient, they don’t want to treat you. They way they put it to me last time I was depressed and worried I might have to go inpatient it was clear that they did not want ‘acute’ cases, as they put it.

 

They want the well educated, well heeled, well-off working professional with a mild mood disorder willing to come up with the cash each month for their med check.

Most of the seasoned, really competent good psychiatrists I know (and I’ve had ten second opinions while staying with the same doctor for fifteen years just to know who is out there) well, they’ve already done decades of hospital work and don’t do it anymore either!!!

Pre-retirement, they are reaping the rewards of their years of experience in the trenches, ministering to the very ill, like I was when I met my shrink of fifteen years.

He no longer accepts Medicare or Medicaid or insurance as of 3 years ago. On the plus side, there is continuity of care and I’ve not had to go inpatient for that period of time. Knock on wood.

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But I digress again:

Back to the point of Genetic Testing: We’ve known for some time that not every medicine works for every person. Sadly, for psych patients in depression or a relapse into bipolar depression or schizo issues, it’s a painfully long period of trial and error.

Like I said, one time it took Dr. L to help dig me out of the dark. We tried this and that and in the end we tried another SSRI and I was one of the subgroups of the population who has to wait twelve weeks, not four, for the SSRI in this case, Prozac generic, to become effective. Whew, what a relief. If we had genetically tested me, it would have shown that Prozac would not have been a recommended choice. It only lasted a year anyhow and I had another relapse and switched yet again. I was lucky again. The first one we tried, worked. By the way, he’s cool, he knows I have a sixth sense and lets me help choose what he offers.

Recently I saw a testimonial to the effectivement of genetic testing in a reply to a post on International bipolar Foundation’s Facebook page. Those people, by the way, as well as bipolarhope.com, (bphope.com) are good resources for general and specific information on all sorts of things.

Not to be deterred by the fact that my local mayo clinic’s chief of psychiatry ignored my letter, I’m going to try again. I’m going to announce my journalism credentials and tell them I’ve got both a personal and profession interest in testing to find out which antidepressant would be best in the need of diggin out of my next bipolar depression.

My last one was in April and lasted until July. It was shorter than the year-long one in 2005, but unendurable just the same. I considered suicide every day.

You guys might think I’m strong, like my name but that’s an aspiration. I’m actually not.

I have severe chronic pain and some days I worry about the day coming where I’ve outlived my body’s usefulness and can go no more.

With all the crazy healthy lifestyle choices like raw foods diet, daily exercise and weight training (even though I hate it), I have this feeling I’ll live to be 90,  accumulating more side effects from the medicines for side effects.

I’m already swimming in a sea of them. Once again, side effects or the absence of them, can be traced to finding, as Nine Inch Nail’s Trent Reznor said, “The Perfect Drug.”

(For Tardive Dyskinesia info it’s both on IBPF Youtube channel under “Tardive Dyskinesia” part one, symptoms and cause and statistics and part 2, Getting treatment and the Website, ibpf.com “Move Over Movement Disorder).

I’m going to try again to get them to see me, even though they say they are taking no patients.

I’ll let you know what happens and when it happens. If this shit didn’t work, no one would be doing it.

Reading Material “The End of Illness” David Agus, M.D.

He has his own company that does testing and it’s expensive. ali

Genetic testing for antidepressants ‘standard of care’ at Mayo Clinics

Prelude: there is genetic protein testing available and is the ‘standard of care’ at Mayo Clinics since 2011 and is covered occasionally for medical reasons. It could really benefit a person who needs antidepressants.  We all know that different meds work differently in different individuals. But do we really have to try a bunch of meds and sit around contemplating our own demise for weeks on end to find out? for example, on Prozac, it took me 8 weeks for me to feel better. A lot of bad stuff could have happened to me. So I called Mayo Clinic and they said they are not accepting new psych patients. I am not to be deterred. I am the girl who got cut from the high school volleyball team two years in a row and ended up with a scholarship to Stanford. Determination has paid off in radio, medical mysteries requiring multiple letters written etc. So here’s my campaign to get an appointment. laying odds? 50-50. What’s there to lose? It’s not as if I have no time.

My name is Allison Biszantz. I am writing you to request an appointment. I recently read the book “The End of Illness” which mentioned genetic and enzyme testing which might benefit me.

I am 54-years-old and live in Hollywood Florida. I am on disability and am a writer for Nami local, Nami.org and International Bipolar Disorder. I was a disc jockey and medical transcriptionist for the first ten years of my diagnosis. Before that,  I went to Stanford on a Volleyball scholarship.

When I was 29, I had a full blown manic episode went to 60 day neuropsych at University of Utah and was dx with bipolar 2. In 2000 Bipolar I and antipsychoticws. In 2007 Tardive Dyskinesia, (very well managed with 2.5 mg Xenazine and 50 mg Clozaril, although it took three years to find a solution and many appts.)

I’m Bipolar with ADHD, currently dealing with depression and running out of options. I’ve had the same doctor for fifteen years and I’ve stayed out of the hospital all that time. My doctor does not want to deal with the Mayo ‘Standard of Care’  Cytochrome P450, CYP2D6 or CYP2C9 testing and I am looking to find a doctor who is willing to do that test for me and consult with me. I’m willing to travel. Or be referred to someone in my area if you know someone.

I  want to write a series of pieces for IBPF about this cutting edge science and how it might be helpful to someone with bipolar disorder.

Would you be willing to help me?  I’m willing to provide more info if you request it.

954-922-4310

biszanta@Hotmail.com

@bipolarbrainiac