I’ve had the great blessing to meet (online) a lot of ME/CFS and Lyme/TBD (Tick-Borne Disease) patients. Many have become friends. I believe, taken as a whole, that this patient group has got to be the most medically-literate patient group around.
We have to be. There are few doctors who have a clue what these illnesses really are, or how to treat them.
So we patients bond online, from our beds: on Facebook, forums, and blogs.
We share stories, and trade information – about new studies (what few there are), side effects, and tricks & tips for living. We debate causes, deplore the lack of a cure or even a real treatment, and discuss supplements, labs, and how to live with what we call the “living death.”
We mentor & educate the newly diagnosed, mourn members of our community when they pass away, and support each other when the going gets really tough.
Outsiders looking in to our forums may be confused & lost by the medical acronyms we casually throw around, from NMH (Neurally Mediated Hypotension, also called POTS), to MPS (Myofascial Pain Syndrome), to CBC (Complete Blood Count), to GcMAF (an experimental treatment).
We “talk” like doctors, because often our only route to any improvement, or just slowing the painful, downward spiral of our illness, is to become as educated as we can, and to become advocates in our own healthcare & “medical management.”
My PCP calls this the “collaborative approach,” and I’m greatly blessed to have a doctor who is as open to new ideas as she is – many others have docs who “blow them off.”
Because we as patients are so well-versed in our illness, and living in such despair, we often choose to try (doctor willing) any medication that holds any hope of improvement.
As journalist Llewellyn King recently put it:
The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering. – from CFS: One Disease and Its Costs
When you have no quality of life, you take risks, and you try experimental treatments, or anything that holds any promise.
And so it was that I spent 2 days recently wondering if I had leukemia, before realizing it was a medication side effect.
It was a “perfect storm” of events.
I usually have monthly labwork done at my PCP’s office, but because my LLMD had ordered a huge number of labs just prior to my monthly appointment with my PCP, she didn’t have any labs drawn at my visit.
I received the result of my labwork from the nurse practioner (NP) at my LLMD’s office.
In 20 years of battling this crud, I’ve never before seen a lab come back like this. I’ve had lots of highs & lows, but never one with the test result underlined and the word “ALERT” written by it, like this:
WBC 2.5 ALERT
My WBC (white blood cell count) was 2.5, where range is 4.0 – 10.5. My RBC (red blood cell count) and absolute neutrophils were marked as low, with a number of others in the CBC running borderline low.
The NP says “Hmmm…” several times, shows it to me, and then tells me its either a lab error or “a serious blood disorder.”
Given that I’d just been discussng the severe weight loss, persistant nausea, extreme exhaustion, etc., my mind jumped to the most common “serious blood disorder” – leukemia. It would have made sense.
She told me not to worry about it too much until it was repeated (yeah, right). I had it repeated the next day, a Friday, and then anxiously awaited the results.
While waiting, I unloaded about my anxiety to the members of the mecfsforums, and received many reassuring responses when I explained the circumstances.
I then realized there was a more likely cause than leukemia, because I had made one of those risky decisions I mentioned, and was taking a medication that could cause this type of very serious problem.
14 months ago I wrote about it in a post, Valcyte: the (Slightly) Scary Adventure Begins, about the anti-viral medication, Valcyte, and my decision to give it a trial, based on studies coming out of Stanford.
I knew going in that this drug offered great promise for ME/CFS patients, especially those like myself, with high titers to Herpes family viruses, like EBV.
I also knew that it was “a drug of last resort” and had multiple “black box” warnings – it can cause life threatening side effects.
The most common side effect is a drop in platelets, which help in clotting. But, it can also cause damage to the bone marrow, causing the body to be unable to make enough blood cells, of all types. There have been people who died, or required bone marrow transplants, as a result of the damage done by the Valcyte.
That’s why we have done those monthly labs, watching for those side effects – “sudden onset severe leukopenia” (very low white blood cells), “neutropenia” (very low levels of a type of white cell), etc.
The NP I saw knew I was on Valcyte, but evidently didn’t know its possible side effects, and my PCP didn’t get the results of the labs because she wasn’t the one who ordered them.
Which left me there, copies of alarming labs in hand, mulling the situation, anxiously awaiting the results of the new labs.
Thankfully, I remembered the Valcyte’s possible side effects, and researched it online. I put a call in to my PCP, but she was on vacation (it was by then a Saturday) until Monday.
I spoke with my awesome PCP on Monday, and she agreed the most likely culprit was the Valcyte, and to stop taking it. I already had.
My repeat CBC showed a bit of a rise in my WBC, from 2.5 to 3.7, so it’s still low, but it’s most likely we caught it in time.
The Valcyte helped me, mostly by reducing my PEM, and improved my cognitive function somewhat. It was the only thing to really help at all in the last 5 or more years.
The (more than slightly) scary Valcyte adventure has ended, for now. Once my blood counts come back up, I hope to re-start it, likely at a lower dose.
We make these risky decisions all the time, we patients. Some have said they’ve “donated their body to science” while they’re still using them.
I think that’s a good way to put it.
8 thoughts on “Risky Decisions, or, Valcyte: the Very Scary Adventure Ends”
Yikes, Ash, so glad you caught it and figured it out. Good thinking. And I concur on the “donation” – I definitely feel that way.
Because Valcyte is so risky, and it was my decision to try it (gave my PCP the Stanford info & requested it), I wrote up a medical release of liability for my PCP – I didn’t want her to get in any trouble should anything dire happen. Very few doctors would go along with a patient requesting a drug like this, and I am very lucky to have one who would.
We decided to call it an “informal clinical trial of one patient.” 😉
This is, sadly, one of the few ways for doctors to learn about what works, since there is so little research being done. I have no regrets.
But yes, I, too, am glad I figured this out in time – very glad!
You write so beautifully despite being so ill. How often I tell you that Ash. I am SO glad you figured out your own issues!!! Ya know, I wondered if there was a way to sign a waiver to get the Low Dose Naltrexone from my internist. Like everyone else, I am so desperate for answers for a life worth living.
Thank you for sharing your continued sagas, so to speak. I would gladly give my body to science now, if I knew it wasn’t going to make me any more miserable than I already am. At this age I just want a little bit of comfort & not asking for the moon. How drs. have called Epstein Barr a yuppie disease that does no longterm harm makes me ill. No pun intended! I have never had any help for the three viruses supposedly causing all my health issues.
My thought is until someone does take charge of them, I will never regain my health back, but if it means having to go through issues as bad as chemo, from all I hear it is, never mind. Huge hugs to you.
I am seeing so much literature on thyroid issues not being addressed with CFIDS/FMS, & then it affects the adrenal glands as well. That can also be caused by viruses or Lyme. I am seeing two new drs. this coming wk. One is an Endo., the other a Family Practice Dr. Wish me luck. I have a chiro who wants to do alternative therapy on me with muscle testing & labwork. To think I have two ins. & they don’t get me the help I need with medical drs., & then have to put $ out on my own just scares me because it never ends. I keep reading about the thousands of dollars people spend on alternative therapy to no avail. IF we got our lives worth living back, THAT would be worth millions. We are all such lost souls, but how wonderful to know everyone is so great about helping one another. Huge hugs to you my friend!
Yes, it’s a sad situation we find ourselves in, having to do all this research, and make decisions like this. I am so very thankful to the forum members who came to my rescue when I was trying not to freak out about it. There was even one other who had the same thing pop up while on Valcyte, and that was really reassuring!
There are so few in our community who take Valcyte, since it’s still in trials for ME/CFS. With no meds specifically approved for us, unless you count Lyrica & Cymbalta which are approved for fibromyalgia, pretty much everything we are taking is “off label.”
If you want, I can try to figure out where I saved the release of liability I came up with for my doctor & you can see if it would help persuade one of your docs to give you a trial of some of the different meds. My doctor didn’t ask for it, but I felt if she was going out on a limb for me by prescribing it at my request, it was the least I could do.
Regarding adrenals – have you had an adrenal stress test? It’s a saliva test that you do 4 times over the course of 24 hours. Adrenal & thyroid issues are so common in all of us.
Best of luck with your new doctors! It’s so hard, finding someone who will work with you. I researched a lot online & came up with the name of a medical group that is both regular care & urgent care, but also has a working knowledge of fibromyalgia. When I went for my first visit, I laid it all out in simple terms: I’m a really complicated patient, with a decade long history, chronic Lyme, ME/CFS/FMS, etc etc, and said I was looking for a PCP to write all my rx’s, and who was up for a challenge! I said that I’m well aware that doctors these days have limited time for appointments, and not everyone wants a patient like me, and if she didn’t, that was okay, but please be honest with me.
I will never forget her response when I asked her if she was up to the challenge – “Absolutely!”
Fingers crossed you find someone similar!
I’m so glad you figured out what was going on. You know, my doctor is decent. He treats my pain. He says he doesn’t believe in CFS and has never heard of ME. (This is a doctor from a very well known and respected medical school and affiliations) I just sigh… Take the best i can get, and apparently he is. He said he believes in Chronic Fatigue, just not a ‘syndrome’ so maybe in that sense, he is correct. He just doesn’t discuss it with me because he says there isn’t anything they can do. Sorry, I regressed, but you are so right in that we have to become our own educated advocates, and even then, the knowledge may trouble us, like me, when my doc says he hasn’t heard of ME.
My brother has Hep-C. He is taking some kind of experimental treatment. Boy, I hear he is sooo sick! Very sick! Losing weight, broken out in hives, and my mother is very sad. The doc tells him it might cure his Hep-C. The thing is he wasn’t sick going in. They told him he might get sick one day, so this bothers me, but to each his own, and my brother would certainly not ask or take my advice or consider my opinion. Dang, I regress again.
I gotta go to an appointment and reading your blog, and commenting, is a terrific way to avoid getting ready. I don’t like appointments anymore. I’m sick of responsibilities Ash. I am frustrated!
You sound much better. I really do wish I could come see you soon. Even if for a night or two. Maybe Neil can go to my mom’s. Maybe. Nobody offers me help, and I need it. Okay, I can’t stop ranting off here, so gotta go.
Thank you for your informative blog posts, sharing your knowledge and for your awesome compassion, as I know you’ll have for my all over the place reply here 🙂
Big hugs and Love,
Sweetie, rambling replies are very welcome over here!
I’m really irked at your doctor on your behalf. There has to be someone better that will take your insurance. We’ll just have to work on that! One suggestion would be to look up “fibromyalgia good doctor list” and see what you come up with – there are several groups that maintain them, and a FMS doc is a good place to start.
I’m so sorry to hear about your brother. I hope he will be okay.
I, too, am sick of responsibilities & things I must do *right now*. I’ve been dealing with the presumably final batch of SSDI paperwork that went out Tuesday, and other must be done now crap.
Many warm, gentle hugs, from me, and Kodi sends doggiekisses to his girlfriend, and to you!
Hi Ash! I just saw this note. Thank you for your reply. I should tell you that I am not sure what avatar shows up in my comments, and it seems that I have lost my original one.
About my doc, I’m really not sure there is a better one in the area. It seems like every one I’ve been to, other than the pain specialist at Duke who recently left, has been completely either ignorant, or have an agenda, unknown to me, that leads them to NOT diagnosing and NOT using tests as proof.
I am grateful my doctor treats my pain. I’m afraid that’s hard to find.
I too hope my brother is okay. We don’t really talk anymore, and I only hear from my mother, but the medicine is really really bad!
I sure hope your disability was approved. For a long time, I thought it was already, so was surprised to learn differently. My mother once said when I was applying, “You must have to be six feet under before they give it to people if they don’t give it to you.”
Yet, I can’t count the times I’ve been judged, mocked, criticized, made fun of, and called names for having been approved. People are not usually kind about that. I ought to just say I’m retired and loving it. Tell folks I saved up money and am doing great!
I hope your migraine is better. I thought I left you a comment, but didn’t see it. Maybe that was on FB.
It’s rainy here. The thunder beings are giving a low roar not too far away. I like it, but pretty soon will need sunshine. I get super depressed if the sun doesn’t shine brightly for four days straight. The fifth day, I start to think of leaving. If I had money, I’d fly as far as I had to for sunlight.
With wishes of wellness, freedom from pain and Peace,
I think it is important to embark on Valcyte treatment with professionals who are familiar with this drug and have a vast experience with the treatment protocols. There has been one death from Valcyte, it was in India and we are not sure of the circumstances. If you have certain pre-existing conditions; Valcyte is not the drug of choice for a patient. Millions of patients take Valcyte without any negative effects. This is not a scary drug. However, under the wrong supervision and with excluding pre-existing conditions- Valcyte is not a choice for treatment. Valcyte only works on up to 75% of those eligible for treatment. there are many paths for treatment, I only hope patients seek out professionals who are knowledgeable and capable of treating patients efficiently and effectively.