kdubois

Kelly, Volunteer Mentor @kdubois

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Activity by Kelly, Volunteer Mentor @kdubois

kdubois

1 day ago by @kdubois re: cymbalta in Chronic Pain · View  

@saltis, it's just nice to know that it's like this somewhere on Earth!

kdubois

1 day ago by @kdubois re: cymbalta in Chronic Pain · View  

Agreed, availability and costs are probably the biggest reasons why these aren't more well-known. Hopefully with places like OneOme/Mayo lowering their prices the way they have, pricing will go down across the industry.

kdubois

1 day ago by @kdubois re: cymbalta in Chronic Pain · View  

@vickiekay, It shouldn't matter what type of meds you are taking at any given time because this is important genetic information; your body won't be changing. And as we age, we tend to take more and more medications. Maybe state it this way to your doctor.

I traveled to the Center for Individualized Medicine at Mayo - Rochester for my pharmacogenomic testing, but OneOme (who does these tests and was founded by Mayo) now has a much larger test-set that your doctor can order online and they mail it to you... you do a gum swab and FedEx it back to them. It only costs $249 and includes 22 genes (whereas the nine tests I had done a year ago were just under $2,900). Hopefully, you live in a state that has certified OneOme. (My state hasn't, so I wasn't legally able to get my doctor in NY to order it, but I was able get this test done by having one of my Mayo doctors do it because he is in a certified state. We're waiting for the results as I write this.)

(There are other private companies out there who also do these tests, but my PCP prefers that I have this testing done at a place like Mayo because of their reputation and quality.)

And this test set does include testing the genes involved with metabolizing Cymbalta. Go to http://www.OneOme.com for info for you and your doctor.

I suggest doing these tests if possible, and I believe that everyone should have them done. These polymorphisms are not rare.

I was sick for 12 years due to P450 polymorphisms and taking medications that I wasn't able to properly-metabolize. Going to Mayo and having these tests done prevented me from going into drug-induced liver failure and saved my life.

kdubois

Regarding PCPs... in my local medical community (I live in Western NY), I've been having better luck over the past few years with younger doctors (late 30s / early 40s) when it comes to taking the steps to keep looking for answers. As a fellow-patient with many, many medical conditions, I told my PCP that I truly need a "general contractor" and that he needs to have a vested interest in seeing me succeed. Luckily, he agrees, and I truly feel that he cares about me. He's actually told me that, as a doctor, he has learned vast amounts from me regarding what it means when a patient advocates for themself as much as I did/do. There are good doctors out there!

As an aside, my father-on-law was recently told in February that his knee replacement surgery would be scheduled for late July. I told him to go back and tell them that he couldn't wait that long, that he's already waited a very long time, and that he wanted to get on the waiting list in the event that there was a cancellation by another patient. He did, and his surgery was last Friday. Maybe this strategy will work for your partner/you.

And, perhaps you can schedule at Mt. Sinai in Toronto while continuing efforts to get into Mayo. Doing that won't hurt anything.

Again, never lose hope.

kdubois

Hi @kspiel, I don't have a lot of experience with autoimmune diseases (with the exception of a year-long battle with drug-induced lupus), but I do have a lot of experience with having to advocate for myself, and I had been treated in the same manner as your partner for years before I took myself to Mayo Clinic for evaluation. As someone who has been through it in the past, thank you for sticking by her side and maintaining the attitude that she should not have to simply accept what has happened to her. In my volunteer work for Mayo and also in the various medical-related forums I have been in on Facebook, I have seen many, many people who don't have the support of family and loved ones. Your continual care for her is essential and I can ensure you that it's not taken for granted.

My advice to both of you to help figure this out... keep track and journal everything: symptoms, results of appointments, etc. Perform online research from reliable, valid resources to educate yourselves. Ensure she has a good primary care physician that she trusts and believes in her issues -- sometimes, this is the biggest obstacle. (I went through four PCPs before I found the guy I have now, and he's the best PCP I have ever had. It's okay to fire doctors who aren't doing their jobs.) When going to doctor appointments, be sure to go with her, and take a notebook and a pen to write down notes. And very importantly, be sure to take care of yourself.

I am living proof that with perseverance, changes can happen. I had been growing increasingly more ill for 12 years, and now I'm on the road to recovery. It can happen. As I frequently say, no one should have to settle with their health.

kdubois

Hi @megagrif, are you taking any other medications right now in addition to the Toprol and Zantac Duo Fusion Chewables?

Regarding your GI issues, in addition to the GERD, do you also have a hiatal hernia?

kdubois

3 days ago by @kdubois re: cymbalta in Chronic Pain · View  

@zinniagal weather definitely affects me and the fibro of one of my friends, as well. Spring and autumn aren't always the funnest times of years for us living in western NY.

kdubois

3 days ago by @kdubois re: cymbalta in Chronic Pain · View  

Hi @AlwaysHopeful, the following info should be useful and might help others on this thread, too.

Whether or not Cymbalta (duloxetine) helps a person depends on several factors, including how the person's body metabolizes the medication.

Most medications are metabolized by the body's cytochrome P450 liver enzyme system. This system contains a ton of different enzymes that are basically genes. Whether or not your body metabolizes a medication properly can depend on three things...

1. Whether or not you are taking a medication that inhibits/induces an enzyme that your body uses to metabolize another medication (or even the same medication). (For example, duloxetine is a substrate of the enzymes CYP1A2 and CYP2D6, which means that these two enzymes metabolize duloxetine in your body. But if you take a medication that inhibits (i.e., slows down) those two enzymes, it will cause you to too-slowly metabolize duloxetine, which means that you will not receive the intended effects. Interestingly, duloxetine actually inhibits CYP2D6. Many medications inhibit P450 enzymes; fewer medications induce them.)

2. Whether or not you have P450 liver enzyme polymorphisms, which means that you posses an enzyme or enzymes that are mutated and make you, organically, metabolize some medications too slowly or too quickly. These polymorphisms are not rare. After years of taking duloxetine, Mayo performed pharmacogenomic testing on me and figured out that I was born with CYP1A2 and CYP2D6 polymorphisms, which explained why I never received the pain relief effects from taking it. (The official diagnosis for this is called CYP450 Deficiency.)

3. A combination of numbers 1 and 2 above. Because I was also taking other medications that inhibited my CYP2D6 enzyme, it made the above situation even worse.

Unfortunately, most doctors only have very rudimentary knowledge of the P450 system, and they don't know enough about drug-drug interactions via these enzymes to recognize of suspect these issues. If you suspect this may be an issue for you, you may be best off talking to your pharmacist first.

Here's where you can look at substrate, inhibitor, and inducer medication info: http://www.mayomedicallaboratories.com/it-mmfiles/Pharmacogenomic_Associations_Tables.pdf

kdubois

Hi @myra, did your doctor say why he wanted you to cease the metoprolol immediately? From what I understand, ceasing metoprolol shouldn't cause those symptoms.

kdubois

Hi Paul @kozlo52, I'm glad to hear that they are doing the esophagram and that they are doing it soon. Your surgeon is correct that if your esophageal muscles aren't pushing downward hard enough that you need a 270º wrap versus a 360º wrap, but i'm unsure how this would alleviate your heartburn issues. (Maybe there's something that you and I aren't aware of that contributes, but I would specifically ask him how this would help with the heartburn issue.)

I understand that they would want to do a Bravo, as well. They want to measure your acidity levels. For me, on two different occasions (at home and at Mayo), they went in to do the Bravo but never attached the device because they could visually-see how much esophageal burn I had. Note that prior to the Bravo, you need to cease taking all PPIs, H2 Antagonists, and Tums-like medications, I think for a week.

Having these tests are good, but you seem to have a lack-of-faith in your current surgeon, which I think at this point is understandable. If I were you, I would move forward with at least the testing. With that said, are you in a position to be able to obtain a second opinion?

I am concerned with having the Nissen undone, that you'll have side effects from long-term use of medications and you may likely still experience GERD, which can cause other health issues (it caused me to have mild asthma and I would wake up almost-aspirating my food).

And with all of that said, are you able to go to Mayo? They use a very patient-centered, team approach and the various specialists ensure to review each other's clinical notes about you and communicate with each other to ensure the best strategy to work on all of your conditions.

kdubois

@ryman good luck to you, too. Please keep up posted!

kdubois

Wed, Mar 22 at 1:08pm CDT by @kdubois re: Silent migraines getting worse in Brain & Nervous System · View  

Hi @ryman, I've had migraines since age 16 and am 45 now; I only had the auras during my late 20s. My mother and older brother have also both suffered migraines since their teens. My 14-year old daughter has horrible migraines which start with the aura prior to the pain and nausea/vomiting. My husband, his father, and his daughter all have painless aura migraines.

When you go to your appointment, be sure to take a journal of timeline/frequency, intensity, and differences/changes in symptoms. Look back and see if there have been any changes since your symptoms worsened/changed... lifestyle changes, changes with diet, a new medication, etc. Be sure to tell the doctor which medications you've previously-taken to treat the migraines that have helped or not. Be sure to tell them whether or not light/dark, noise, hot/cold, physical activity, etc. make them worse or better. Good luck!

kdubois

Tue, Mar 21 at 7:19pm CDT by @kdubois re: Reversal of a fundoplication in Digestive Health · View  

Hi Paul @kozlo52, the schedule Mayo gave me to follow post-surgery was very different from those I researched online beforehand, which was nice to learn.

Th instructions they gave me were full liquid diet for two weeks followed by soft diet until my follow-up appointment, which was in December. My surgery was 10/18/2016, and I was able to eat a small Thanksgiving dinner. They gave me a four-page handout of the soft diet food to eat; it included foods that were okay and also foods to avoid during this timeframe. I still stick to smaller meals, but I also struggle with remembering that I need to stop eating as soon as I start to feel full.

From what I have recently learned (one of my friends is a pharmacist), it is very common for NSAIDS to cause heartburn, and fioricet and mobic contain an NSAID.

Moving forward, I would avoid NSAIDS. It sounds as if you experience traditional migraines (aura); have you ever tried migraine meds, such as sumatriptan? These do not contain NSAIDS.

With that said, I would still definitely request an esophagram because of the frequency you are having heartburn.

kdubois

Fri, Mar 17 at 8:07pm CDT by @kdubois re: Reversal of a fundoplication in Digestive Health · View  

The LINX device is awesome, and being able to eat the same day is super-awesome.

With that said, note that not all insurances will cover it (probably because it is new), and it can't be used if the hernia being repaired is too large. My hernia was 4cm and Mayo told me it was too large to use the LINX.

kdubois

Fri, Mar 17 at 12:09pm CDT by @kdubois re: Reversal of a fundoplication in Digestive Health · View  

Hi @onejoe, I agree, your wife needs a very experienced surgeon, but it's nice to see that her local surgeons are willing to admit that they aren't experienced enough. A consult at Mayo - Scottsdale is an excellent idea if you are in California, though I can only speak on my personal experience with Mayo - Rochester. (I had my Nissen done at the Mayo - Rochester by a thoracic surgeon named Dr. Francis Nichols. He's been doing these surgeries for more than 30 years, and I'd bet my life that he's done tons of corrections, redone these surgeries, etc. He's very nice, has a great bedside manner, and also a great sense of humor.)

As an aside, my brother had a Nissen fail a few years ago after he became sick... coughing and sneezing for several months made his Nissen fail. He had his redone at UVA (he lives in Virginia) a few years ago, and it's been good ever since! These can be successfully redone!

kdubois

Fri, Mar 17 at 11:54am CDT by @kdubois re: Reversal of a fundoplication in Digestive Health · View  

@kozlo52 I don't have to eat several small meals every day anymore, and haven't for a while. I only take Advil every once in a while, but I have never experienced heartburn from it. I honestly haven't experienced any heartburn since I had my surgery on October 18.

I do stop eating immediately when I feel myself getting full, but I have over-eaten a couple of times and had no heartburn.

They *really* need to do an esophagram to see if there are fluids coming back up. This test includes imaging while you are standing up straight but also while you are laying down and rolling around in circles. I would ask them to perform an esophagram.

How frequently are you experiencing the heartburn? Daily?

kdubois

Thu, Mar 16 at 11:27am CDT by @kdubois re: Reversal of a fundoplication in Digestive Health · View  

Hi @kozlo52,

I had a Nissen Fundoplication at Mayo on October 18, 2016 to fix a 4 cm hiatal hernia and non-functioning sphincter muscle. Pre-surgery, I would constantly have heartburn and GERD. I would have to finish dinner before 6:00 p.m. every night, and sleep upright using a bed wedge or I would wake up choking on with partially-digested food and stomach acid. (We did the surgery to fix these issues but also because Mayo figured out that genetically, I don't properly-metabolize many medications, including proton pump inhibitors.)

Since the surgery, I have had no GERD or heartburn, and I can sleep normally and eat at normal times again. Post-surgery, I did take NSAIDS for pain for about two weeks.

Important to note: to test my fundoplication post-surgery, Mayo had me do an esophagram and not another manometry. The esophagram will better-show that fluids aren't coming back up into your esophagus as it's a true imaging test and they can literally watch the fluids (barium) real-time while you consume them.

kdubois

Wed, Mar 15 at 2:01pm CDT by @kdubois re: Possible Rare Condition or Just Chronic Pain? in Chronic Pain · View  

@frankthetank112358 you're very welcome!

I would actually remove the memory foam pillow from your bedroom. My memory foam mattress pain actually added on to the pain I was having from the P450 drugs in my system. It was simply an incidental finding that I don't think I would have discovered if I hadn't gone away from home for two weeks. Interestingly, my memory foam pain greatly resembles the pain I feel if I consume caffeine. (Somehow, I don't metabolize caffeine correctly either.)

And with P450, tons of different meds (and supplements and foods) inhibit or induce many of the enzymes, making them work too slowly or too quickly when metabolizing other medications. (This is what TV ads are talking about them they refer to grapefruit juice.) So, if you are taking a medication and it works great for you, but take it a year later and it doesn't work as well, it could be because of other drugs (or even foods or supplements) that you are taking. Even if you don't have polymorphisms, each drug that is added or taken away from your regimen can change how your body metabolizes the remaining drugs being taken. Unfortunately, very few physicians have more than a rudimentary understanding of this, but the more people talk about it, and they more places like Mayo draw visibility to it, the more educated people will become. Pharmacists totally know about this, which is good.

kdubois

Wed, Mar 15 at 11:50am CDT by @kdubois re: Possible Rare Condition or Just Chronic Pain? in Chronic Pain · View  

@frankthetank112358, I think I can provide some insight behind one of the issues you have been experiencing based on my experiences.

I first went to Mayo in September 2015 after becoming increasingly more ill for 12 years with unexplained body wide pain; targeted, transient pain in my shoulders, legs, arms; GI pain; kidney pain; abnormal sweating; daytime fatigue; vitamin D deficiency; and much more. I had 20 doctors at home, and none of them could figure out what was wrong with me. As background, I also, throughout my entire life, received little-to-no relief from pain medications, especially heavy-duty, prescription pain meds; they would take a long time to kick-in when they did work, and they never lasted very long. I would also have strange reactions to other medications; not exactly adverse reactions, but definitely atypical reactions (for instance, with cold medications).

Prior to my follow-up December 2015 visit, I emailed my primary Mayo doctor asking if he would refer me to someone there for evaluation for drug hypersensitivity. Eventually, I was referred to their Center for Individualized Medicine for Pharmacogenomics testing, and Mayo figured out that genetically, I don't properly-metabolize many medications. There's a liver enzyme system in our bodies called cytochrome P450, and these enzymes are basically genes. These genes drive the metabolism of many of the toxins that enter our systems, some of our hormones, and most medications. We figured out that I was incredibly sick from being prescribed medications, for years, that I don't properly-metabolize due to enzyme polymorphisms (my diagnosis is called CYP450 Deficiency), and ***this diagnosis explained why I get almost zero pain relief from prescription pain medications.*** (They also figured out that I don't properly-metabolize many cold medications, GI meds, psych meds, cancer medications, endocrine medications, etc. Great info to know for my future!)

Given your historical response to prescription pain medications, you may want to consider having pharmacogenomics testing done. There are many companies out there that do it via mail order now and the prices have declined significantly. To have it done, the process is usually: your doctor contacts the company, the company contacts you, and the kit is mailed to you. I actually have a new kit sitting on my kitchen counter right now from OneOme, which is a Mayo start-up. I originally had nine genes tested a year ago, but the new kit tests 22 genes, so I asked one of my Mayo doctors to order it for me. Check out OneOme.com or Google "pharmacogenomics tests" or "PGx tests" or "pharmacogenetics test" to see a list of companies. The web sites for the various companies seem to always include very educational info for doctors and patients. (Note that each PGx company needs to be "certified" by each state for physicians of that state to be allowed to order. I live in NY and NYS physicians aren't allowed to order genetic tests (I believe from any PGx company), but since my Mayo doctor is in Minnesota, a OneOme-certified state, he was able to order it and have it mailed to me.)

You aren't taking a lot of meds right now, which is good, but having this genetic information might be helpful to you.

I asked about your memory foam pillow use duration because last August I came home from Mayo after being there for two weeks, and I felt great, but I started sleeping in my own bed again and within a day, my body pain increased... a second night in my own bed, and it was worse. Then it occurred to me: while my hotel room at Mayo had a regular mattress, my home mattress was a memory foam mattress. The odorless fumes from memory foam were making me sick. (I googled it and was surprised to see many search results came up about this.) So, my husband and I bought a new mattress, and my pain went away. Now, I'm not positive that this is related to my P450 polymorphisms, but I was recently exposed to memory foam again, and it happened again, so I know that I need to avoid it now. You might want to ditch the memory foam pillow and see if some of your body pain slowly goes away.

This doesn't answer all of your questions, and there may certainly be more going on with you, but it might help get you on your way to finding some answers. I have had to advocate for myself a lot -- including taking myself from Rochester, New York to Rochester, Minnesota several times --, and I know it's exhausting, but you deserve to live a healthy, fruitful life. I can attest that pushing for answers absolutely saved my life. Keep pushing and searching for answers, it's worth it.

kdubois

Wed, Mar 15 at 10:37am CDT by @kdubois re: Possible Rare Condition or Just Chronic Pain? in Chronic Pain · View  

@frankthetank112358, a few more questions...

• When did you start using the memory foam pillow?
• Do you have a difficult time waking up in the morning?
• Do you have fatigue during the daytime?

To confirm, you have historically received little-to-no relief from pain meds such as Tramadol, Vicodin, Meloxicam, Nabumetone?

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