Friday, January 11, 2013

Tamiflu: One couple's Cautionary Story

I know a lot of people are talking about the flu this year. Flu shots and Tamiflu are routine in dealing with the yearly flu season. Although I don't have a negative experience with the flu shot, I do with Tamiflu. 

Tamiflu changed my life.

My 28 year-old fiance, Michael, came down with the H1N1 virus (otherwise known as "swine flu") in November of 2009. He was prescribed Tamiflu, and took the 1st dose after coming home from the pharmacy with the pills. Shortly after, his hands started swelling up, he developed a rash on his stomach, and he was hallucinating bugs crawling on the walls. I made a quick call to my brother-in-law who is an ER physician, and he told me I should take Mike to the emergency room. It was at the peak of the flu season, and the waiting room was filled with people swaddled in blankets with croupy coughs. Mike got checked out and the nurse asked him why he took Tamifu. He didn't have the croupy cough, where it sounds like half of your lungs are filled with fluid. Now he was having an allergic reaction. Although he continued to have mild hallucinations, his swelling seemed to be going down and his breathing wasn't compromised. He was sent home, but neither of us slept well that night.

The next day, I came down with the flu also and took a dose of Tamiflu. I didn't have any reactions, but I thought better of continuing with the medication considering it had landed my fiance in the ER. My flu ran it's course, and I started to get better after two weeks. Grated, two weeks is a long time to be sick from a flu, but Mike wasn't getting better. Even though his acute flu symptoms were subsiding, he still felt like he had the flu. Weeks passed, then a month. He was not better. In fact, he was getting worse. He was having allergic reactions to everything and anything he ate. His body was acting like he was taking the Tamiflu again and again. His mother came down to help. She is a practicing PT and knew about food allergies. She cooked him lamb and rice with veggies. No salt, no spices. He didn't seem to react, but he still wasn't better. He went to see allergists, internists, chronic fatigue specialists. He saw 8 different M.D.s. No one could tell us what was wrong with him. Some suggested it was in his head. He went on short-term disability and his work was kind enough to let him keep his insurance.

A family friend referred him to a Naturopath in Santa Monica. Now, Mike is a very science oriented person… his dad is a literal rocket scientist. He was hesitant to go, but since the Western doctors were turning him away with nothing but doubt to his illness, he went to see the Naturopath in January of 2010. She said the Tamiflu caused an allergic reaction and the medication in his nervous system. She started treatment for his adrenals and thyroid. He was also tested for food allergies and supplemented with a multi-vitamin (because his diet was so limited). Within a week, we could see a difference. After a few months, he was only back to about 50%. Walking around the block with the dog was still a challenge. This was especially scary because we were getting married in April. Of course before he got sick, the wedding venue deposit had been made, the photographer had been booked, and the save-the-dates were sent out. We just had to hope that on April 10th, 2010, Mike would be better. Or at the very least be having one of his "good days". 

A few weeks before the wedding, I got another flu. A shorter one, I was over it in about 4 days. We tried to be careful and not get Mike sick. But he did. Less than a week before the wedding, he had the flu. We hoped it would be over quickly like it was for me, but as the rehearsal dinner approached, we realized he was too sick. I called my dad (who is the Chief of Surgery at his hospital) the day before the wedding. I was desperate. Was there anything he could do!? Then I heard two beautiful words: Ringers Lactate. This was my only hope to get my fiance to the alter. My dad came over with 3 bags of the IV fluids, as I jetted off the the rehearsal. Alone. 

Our officiant filmed the rehearsal so we could show Mike. A friend walked me down the isle, since my dad was administering the fluids back at our apartment. About an hour into the rehearsal dinner, Mike showed up with my dad. He looked better, but I could tell he was putting on a brave face. The fluids had been replenished, but of course his fatigue was still there. 

The wedding went fine. He was able to stand at the alter while we got married, take pictures for the cameras, and dance the first dance. He had to bring his own food, because his body was still reacting to most foods. I couldn't feed him cake after the cutting. There would be no carrying me over on the threshold of the door to the hotel room. But we were married, that's what mattered. 

We missed our flight to our Honeymoon because the IV only bought him a little time. The flu was back. We took a later flight, upgraded to first class for the easier access to the bathrooms, and had a very subdued honeymoon. We went to Kauai, but there was no hiking, canoeing, waterfall jumping. It was a lovely honeymoon, don't get me wrong. But his illness was always there. Always reminding us that things weren't normal.

Getting back to regular life, now as a married couple, was difficult. His short term disability had run out, and physiologically transitioning to long term disability felt like admitting defeat. Somewhere along the line, it was decided that his diagnosis could best be described as "Chronic Fatigue Syndrome". I was devastated  because I knew there wasn't a cure for that. But following his Naturopath's plan, over the course of another year and a half he continued to get better. 

I am happy to say that Mike returned to work in January 2012. Writing this in January of 2013, he is not 100%. He's about 90%. We'll take it. He isn't climbing mountains, but he can go on dog walks, he can exercise, he can swim. He is a 31 year-old with the stamina of a healthy 60 year-old.

I am not trying to dissuade anyone from taking medications, I just feel compelled to tell our story. If we had known what MIGHT have happened to Mike, he would have never taken Tamiflu. Take precautions when taking any medication, and please only take Tamiflu in the most dire of circumstances. 

Here are some links if you want more information-

Publication Bias (he starts talking about Tamiflu around 12:03):

Official Side Effects include serious mental/mood changes, confusion, agitation, self-injury, rashitching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing:

What was that about self-injury? (This is just one article, you can Google Tamiflu and Suicide):

Is Hallucinations a common side effect? Did that just happen to your husband? Nope, again try Google or go to:

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