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

The ignored letter to Mayo requesting an appointment

You would think that people in the business of helping sick people would want to. I wrote this letter to Mayo Clinic, (who is not taking on new patients) to get on a waiting list and got no response. Color me surprised!!!

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

Manic While Mystery Shopping

So I was mystery shopping after getting my certification and driving from one supermall to another. I was the type of customer that the workers remembered so if I felt I was getting to familiar and and so forth I would tell the mystery shopping people and they would take me off the account.

They always pay you less than you are going to want to spend. For example, I was sent to L’Occitane, a shop with perfums and soaps that start at forty bucks. And for that shop you are given 30 to spend. Yuk, right?

Then I got a string of ‘shops’ that’s what jobs are called at Chanel and Dior cosmetic counters. A total of six. One after another, pretending to be interested, accepting a makeover, fun, right? Not so much, really. I was given 80 to spend, and their eye shadows start at 50.00. And if you get a makeover for free or go to a class, you will have so much pushed on you that it’s hard to stay within budget. The company was called “A Closer Look,” for those of you who want to do this kind of high end sampling.

Then there was the three hour long report with 200 questions on the back end of each shop.
And there was something wrong with their computer system. So I had to do each of these reports twice. That was the end of mystery shopping for me. Because the report was due tomorrow and they didn’t take any responsibility. Plus I had incurred credit card debt on account of being in stores, shopping, while manic. Never a fine idea.

Purpose of private Bipolar “Our Cycles Unite Us” page on FB

Here is the deal. I have a normal facebook feed. I’ve posted just enough stuff so that they know, if they are curious or concerned about themselves or someone else, they can contact me or my digital publishers who I also promote, because they know more than I do. Even after twenty five years. IBPF’s free downloadable book, “healthy living with bipolar disorder’ takes an unflinching, unmoralizing look at many aspects of the illnesses that drug company sponsored websites just plain ignore.

But there is new stuff on the horizon. The wave of increasing numbers of obese and overweight in our nation has partly to do with all the psych meds that affect our hunger, cravings and metabolism rates and I’m researching this subject so I can write an informed blog with links called “Meeting Metabolism slowdown Head on.” That will help people. There are advances in the medication of people with metabolic disorder or prediabetes conditions, the FDA just approved another drug last week. There is beginning to be a proactive movement to combat this problem. But I know some other stuff, some wholistic stuff that can help beyond ‘diet and exercise’ stuff that is really frustrating to many of us. So that’s one issue of research that is multi pronged because apparently the meds I’m referring to cause physical changes in our pancreas. But I want to research this more before I print it. I just wanted you to know that this page is going to be an extension of living healthy with bipolar but more current science than once a year.

Also there is the exploding field of genetics and individual protein enzymes, with which the info will help decide which medication the patient will be more likely to best metabolize, with least side effects and more able to get the benefit. This has been Mayo Clinic’s standard of Care since 2011, along the lines of ALL health problems, not just psych. So why don’t we have it. What’s been holding it up? I want to find out and bring the info to you. It just takes time and I need you to be patient.

Here is the link

: http://goo.gl/IYYYva

It’s actually easier to find by going on Facebook and typing: Bipolar Disorder: Our Cycles Unite us