In October 2015, after nearly a year of being bedridden and receiving no medical treatment, I finally got to see a doctor. I shouldn’t say I saw him, because well, not only were my eyes completely covered during the appointment, we weren’t even in the same room. In fact, the appointment consisted of the doctor calling my mom (seated outside my bedroom) from his office in Silicon Valley. The distance between us was about 200 miles, yet he was ethically willing to charge me $500 out-of-pocket for a 30-minute phone call (which I’m pretty sure is illegal since I had MediCal insurance), and I wasn’t even included in the conversation.
But to be honest, despite his exorbitant fee and a bevy of other complaints I now have with him, I’m so incredibly grateful that he was willing to treat me. If he had not done so, my condition may not have improved. I may have stayed in a catatonic state for years. I will always be thankful the doctor came into my life and helped me. So what if our relationship was constantly on the rocks? So what if he was, at times, a condescending a-hole? So what if he eventually broke up with me?
With a pile of previously ordered lab work in front of him, the doctor was initially able to ascertain some of the major issues riddling my body.
In the following months the doctor had me take a slew of medications including Valcyte, a powerful antiviral medication to treat cytomegalovirus, one of two active viruses (that he knew about) in my body. My favorite part about taking Valcyte was having to wear gloves because the medication was toxic to the skin, yet by some wonder of pharmaceutical magic it was safe for me to ingest.
The other virus, which the doctor was unable to treat, was Epstein Barr (EBV). These viruses almost always become latent after an acute infection. However, as is the case with many people who have ME/CFS, the viruses either never became latent after entering my body, or they did for a relatively short amount of time and then became active once again. Either way it sucks.
In addition, because I have a genetic mutation labeled MTHFR, which prevents my body from converting B12 and folic acid into usable forms (methyl), the doctor put me on a methyl-folate supplement to accompany daily methyl-B12 injections. I must say the latter was just about the most fun I’ve ever had — my mom poking me with a needle in the dark, followed by an episode of urinating what could easily be confused as blood because, unbeknownst to me at the time, B12 injections make urine turn red. I’ll have to remember that last part next April Fools’ Day.
But the fun was really just beginning. The doctor also had me take hydrocortisone pills to correct the orthostatic intolerance which prevented me from lifting my head off the pillow or laterally stretching my limbs. The cause was my adrenal glands and hypothalamic pituitary axis in my brain basically had a huge fight and decided to stand on opposite ends of the room, not talking to each other, while I remained stuck between them with a giant python snake slowly squeezing the life out of me. Like I said, lots of fun.
So I was getting poked with needles and taking 15 pills every day, but I was also starting to feel better. For the first time in a year I could use my phone to text and even listen to podcasts. I could be touched without pain. But I was still so unimaginably sick and the doctor kept pushing new treatments in the hope that I would soon be well enough to travel the 200 miles to see him in person. Meanwhile I was thinking: what else could this guy possibly have up his sleeve?
Well, as it turned out, he had a lot of things up his sleeve. The most noteworthy was daily infusions of saline and vitamins through an IV catheter called a PICC, which at the time I knew nothing about, particularly that it involved a minor surgical procedure with a local anesthetic I had a bad reaction to in the past. One day a nurse showed up at my house and quickly began turning my bedroom into a makeshift operating room. Because of my lack of mobility, the nurse was hesitant but still placed the foot long catheter tube in a vein just above my elbow stretching to within a few millimeters of my heart. Now if you haven’t had the pleasure of having an “expander” tool shoved in one of your veins, then a tube slithering inside your arm, through your armpit, and cuddling up next to your heart, well, I’m afraid you just haven’t lived yet.
As you might imagine this was not an easy thing to accomplish for someone stuck in a completely darkened room. There were complications to say the least and I wasn’t well enough to adequately communicate the difficulties I was experiencing. After the procedure was over I struggled to make a noise audible enough to properly display my misery. Meanwhile the nurse felt the need to tell me how he’d like a shot of Jameson because my name is like the whiskey. My name is not like the whiskey.
I was in excruciating pain, but everyone, most vehemently the doctor, was telling me to leave the PICC in and that because the nurse who placed the tube had left there was no body capable of taking it out anyway. It was a dangerous situation riddled with ignorance and incompetence by the medical professionals whom I gave my trust.
By this time it was May 2016 and the doctor and I were really hitting the skids. Although I was still improving — my voice was becoming more audible and I could elevate my head without becoming sicker — the pain from the PICC was still immense. I don’t know if the tube had been placed in a way that caused the vein to impinge on a nerve or if the pain was merely caused by increased sensitivity from my condition. Nevertheless I was taking Advil every few hours just to keep myself from pulling the tube out and the doctor remained skeptical of my symptoms. He even made a personal plea for me to keep it in because he spent so much time arranging the logistics. So even though he was getting paid for his time and he was not in any pain, I left it in for three weeks.
But I was still very angry. Angry at the doctor for not telling me what the hell a PICC was ahead of time, or why a foot long tube placed so close to my heart was even necessary when I could have had a much smaller IV in my forearm. But most of all, I was angry at him for belittling my grievances and being skeptical of my pain and other symptoms. For hours I would labor through hand signals to tell my mom exactly what symptoms I was having and how severe they were. She would then tell the doctor who would reply with a terse four- or five-word answer like “I doubt it’s that,” or “I don’t think that’s true.”
I was the angry one, not the doctor. I was the one with years of suffering and months of being near death, but still it was because of him that I was improving and for that i had to be grateful.
After all it was the saline infusions that were helping and once he finally listened to me and ordered the PICC taken out and replaced with a regular IV I really began to improve. By July I was speaking polysyllabic words, usually four-lettered ones, and soon I would start eating solid food again.
It was about this time that the doctor broke up with me. Like most acrimonious breakups this one was because a combination of things. His staff was rude, incompetent, and even more skeptical than the doctor. They treated my use of saline infusions as if I had a dependency issue. As much as I love being stuck with a needle in a dark room and having a liter of salt water pumped through my veins every day, I really don’t think I was addicted to it. And even if I was, that doesn’t negate its benefits.
In the end I’m sure the doctor didn’t appreciate that I used my newfound fondness of four-letter words, which I ultimately directed at him, just as I didn’t appreciate him second guessing everything I was telling him. Prior to formally cutting ties with me, the doctor made sure to repeatedly let me know that the saline infusions which he first introduced were “only temporary.” And all I could think was: isn’t everything temporary?
*Please subscribe to my blog below*
41 thoughts on “The Time My Doctor Broke Up With Me: A Bad Story Gone Good ”
Thanks Jameson for sharing this!
I love the way you write!!..So glad for all the success you’ve had since then.
So sweet. Thanks Kathy!
Jamison I have no words for how angry this makes me. Please know I’m sending good vibes your way.
Thank you for the reminder to not take the little pleasures of life for granted.
Hey Taylor. Thanks a bunch. The little things are pretty wonderful aren’t they.
Daaaaang. So glad to hear you’re improving and super stoked that you’re well enough to send out these updates! Thinkin’ of you, Jamison!
Daaaaamn I miss you. Thanks friend. Keep in touch.
Oh my stars, you write exceptionally well! You articulate very well what it is like and I feel really badly for the horrible medical care you received. 🙁 Please keep in touch with us, we care about you! 🙂
Thanks Anita! That’s so sweet!
Wow. Well done. I have to say, as awful as that story was, you made it funny. You can be our lie-down comedian.
Putting a PICC line that far in close to your heart – HOLY BLEEP! Terrible idea.
Aside from the PICC line (and the bedside manner …) those weren’t bad ideas. Are you still getting saline? Antivirals? Testing? Do you have a doctor now?
I love your “voice” as a writer.
PS – I’m Mary Schweitzer, glad to meet you. I’m over at Tahoe and see Dr. Peterson.
Thanks Mary. Since it’s a pretty sad topic I try to bring some humor to it when I can. Still on all the same treatments just with a new doc. I miss Tahoe. If you have to go to the doctor it doesn’t get much better than Tahoe. How are you liking Dr. P? Keep in touch!
Dr. Peterson is both smart and compassionate, and he knows more about the disease – or, at least, my subset of it (immune defects and viruses) – than any other clinician in the country. His biggest problem is the one faced by every specialist I know on this disease – too many patients, too few people in the office. Can’t be helped.
But I am here also because I have been on Ampligen since 1999 – I went off once voluntarily, and once because FDA took it away; both times within a year I was back with severe ME, back bedridden in pain and confusion. So as long as I can stay on it, I do. There are only two places to get it now – Peterson at Tahoe and Lapp in North Carolina. I’ve lived here before, so this was a good place for me to settle. I was getting it in NYC, but Dr. Enlander does not have it any more. When my husband of 40 years died in 2013 of bladder cancer, I came out here because I knew that there are people who can help you if you are on your own. Bob had left me enough money to be able to stay on Ampligen – deliberately. But my children are both back east, as are my grandchildren. Hard choices. Welcome to The Disease.
Wow. That’s quite a journey. Have you thought about other CA doctors? Like Gordon? Or Montoya? I recommend both. I saw Dr. P in 2013 and didn’t get much out of it, but he’s a good guy. I think Gordon is great. He’s a few hours from Tahoe in Sonoma Co.
PS – This should give you a laugh – I have a 19-year-old nephew named Jaimeson. (That is the spelling.)
Haha I like that spelling too
I had both HHV-6A and CMV active in my spinal fluid. I was VERY VERY sick. But my liver rejected Vistide. So Ampligen is (for now) really my only choice. I do very well on it – can’t say I’m normal but I can drive, I can walk – in a downturn at the moment, but when I’m not, I can go hiking. I can read, I write (have a book manuscript that I have to drastically reduce – it’s 750 pages …) – I can take care of myself. I fly to Florida to see my grandchildren, rent a car, drive out to their house, which is, by coincidence, five miles from Klimas’ office, but she doesn’t have Ampligen any more. And I have to stay on Ampligen. The two times I was off it, in less than a year i was back to bedridden in pain and confusion. If I lost it I would have to move to Florida (the kids have had a talk about this – I would get a house where I could live with my son and his family, and they could take care of me -my daughter spent years 13-18 taking care of me.) As long as i can stay on Ampligen, I will. And keep my fingers crossed it continues to work.
LONG version of my story is here:
Just reading about your experience with the PICC made me cringe and vomit at the same time. That sounds so incredibly awful is probably just about the worst thing a person could experience. Temporary pain is one thing but have to live with pain like that for three weeks and not even be able to scream or communicate the pain sounds like a nightmare. You are a much stronger person than I am! Love you Jamison!
Hi! So glad you finally improved, have been checking on your crowdfunding regularily for updates. If you ever have the time, I would love to do an interview about your past year(s). For a ME-research organization in norway. If you got the energy for it, just send me an e-mail.
Thanks Victor. Sure. Send me an email.
Awesome. Whats your email?
Great read jamison. I feel so sad to be one of the folks who thought you should keep the PICC in. I am sorry. Very sorry. That was such a hard time for you-so dark and lonely I imagine. Thanks for writing so beautifully about it and for educating me (us). Keep it going!
So sorry to hear of this rediculous situation…but glad you are doing better.
We have a very similar background (Bodybuilding and PT) and you added me bk on twitter so may have seen that. Im currently bedbound but working with OMF on the forums when I can.
Be good to chat, my email is firstname.lastname@example.org. If you feel up to it at somepoint.
Take it easy,
Hi Ben. Thanks for reaching out. Shoot me an email if you’d like. Where are you located?
Im in the UK. Will send you an email.
Very well written.
I’ve followed your trials and am so happy you’re well enough to blog – you’re such a good writer and have such a great sense of humor which we all need to put up with this stuff. Have you read what Dr. Naviaux’s feelings are re anti- virals? I’m conflicted as to whether to try them. My titers are very high to HHV6 and Epstein Barr but my take (could be wrong) is that he doesn’t consider this an active infection and says anti- virals can do more harm than good (harm mitochondria) if taken without an active infection. Do you think they’ve helped you? It’s so hard to know what to do – such a crap shoot. It’s great ampligen is helping some and to a great extent. Keep getting stronger!
Really good questions Micky. I know doctors certainly aren’t always right but these guys from the PNAS publication seem to be very sensible. I agree that antivirals may not be effective. Harmful?idk. I’ve tried two and very little if anything has come (although I get my cmv results tomorrow so we’ll see if Valcyte has kicked it). Not sure about the active infection. The viruses should become latent after an acute infection. But mind either never became latent, or they did for a short amount of time and then became active again. The weirdest part of the disease is the ebb and flow. It makes me think viruses play a role. Keep in touch.
I found your blog in my junk mail. SUCH A WASTE. Good thing your name is distinctive, so I pulled out the posts. I understand the frustration and anger. However, I was chuckling through because you were having SO much fun. The catheter from hell. OH DEAR. I know people who have IV Picc catheters – inserted by a doctor underneath the collar bone. Ah…never inserted the way you describe. Yikes. Yeow. Not funny. I look forward to reading your newer blogs.
Thanks Pat. Gotta watch out for those filters. You might just miss someone from an obscure country trying to wire you money from a deceased relative who never existed. Haha.
Wow…..I had no idea. I’m just learning now what it is you go through each day and I doubt I’ll ever fully grasp it….but for the record, the way you express yourself is amazing and encouraging. I’m sorry you had an asshole dr……but you showed deeper character. Keep up the progress…..sending good vibes and prayers. I hope you’ll continue to improve and that they won’t be “just temporary” .
Pingback: An Abundance Of Eyewear | Jamison Writes
Pingback: You, ME and CBT | Jamison Writes
Pingback: You, Talkin’ To M.E.? | Jamison Writes
Pingback: A Different Kind of Diabetes – Jamison Writes
Pingback: How Chronic Illness Transformed My Masculinity – Jamison Writes
Pingback: I was published in the L.A. Times – Jamison Writes
Pingback: ME/CFS and Sexism – Jamison Writes
Pingback: Unusual and Tragic and Alive – Jamison Writes
Pingback: Why do Doctors Charge so Much? – Jamison Writes
Pingback: When An Illness Doesn’t Count in Making America Great | The Contrary Perspective