Ash’s Advice: Part 3 – On Doctors

Note: Ash’s Advice is written by, me, Ash, a long-time patient with ME/CFS, FMS, Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings; a series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: ME/CFS, FMS, Chronic Lyme, etc.

Part 3: On Doctors

One of the most frustrating, exasperating, and occasionally, yank-your-hair-out-and-scream, aspects of having ME/CFS, FMS, and other similar neuro-immune illnesses, is finding really good doctors or medical clinics.

Ideally, you’re going to have a Primary Care Physician (PCP) who knows enough about your condition, whichever it might be, to be there for you when you have the flu or other unrelated issues, but who also understands your symptoms, your meds, and what’s going on in your body.

Most importantly, you’re also going to need a specialist in your condition, which may be a Rheumatologist, Neurologist, etc. Rarely, the specialist can also act as the PCP, but most are far too busy.

You may “acquire” other doctors along the way – unfortunately.

About Doctors…

You will inevitably run into Type A:

They are Arrogant. And, callous, and actually fairly ignorant of your condition (although they don’t think so), and not interested in expanding their understanding.

They spend precious few minutes with you, don’t have time for your questions, and they sure don’t want your suggestions. They could care less about your feelings, and allow you very little say in your own treatment.

Like a dictator, they expect you to follow their every order to the T. They throw the standard prescriptions at you, and tell you to come back in six months.

What you’re looking for is type C:

They are Caring and Compassionate. Knowledgeable, and constantly striving to understand more about these complicated illnesses. They offer you all the various treatment options, both the standard prescriptions, “off-label” prescriptions, as well as complementary treatments such as nutritional supplements and herbs.

They look at their work with you as a true Collaboration between the two of you and other members of your healthcare team (specialists, PCP, and family members). They value your opinion, always seeking the highest quality of life for you, and are respectful of your wishes and decisions.

Or, of course, anywhere in between these two spectrums.
Even an inexperienced PCP can be okay to work with if they truly want to learn more, and are willing to learn from you & your specialist.

So, how do you find the good kind?

That’s the tough part.

It’s made even tougher because many specialists in ME/CFS & FMS don’t accept insurance at all, because they spend such long periods of time with their patients, rather than the standard 10 minutes insurance will reimburse them for.

So not only do you have to find someone near you, but they also have to accept your insurance, assuming you have any.

Get started…

To start with, you can check with the doctor finder over at my friend, and fellow blogger, Patrick’s blog, Quixotic: My M.E. Blog. It’s on the right hand side.

I can’t vouch for that list, or any of the lists out there. But the second place to look is to Google the words:

  • CFS/FMS good doctor list
  • ME/CFS good doctor list
  • Or if Fibromyalgia is your only issue,

  • Fibromyalgia good doctor list
  • This should return a number of lists from different organizations.

    If you still haven’t found anyone near you, the next place to look is on the forums. If you’ve found my blog, odds are good you’ve found forums, so ask around.

    Still nothing? Then to Google you go.

    I found my PCP by putting in Fibromyalgia and Virginia (my state), and sifting through the results until I found a practice that both accepted my insurance as well as said it had a special interest in FMS.

    ME/CFS is my biggest problem, but there are a lot more people being diagnosed with Fibromyalgia than ME/CFS, and therefor a lot more doctors with experience with Fibromyalgia, and you are far more likely to find one.

    And yes, as you might suspect, it took a very long time, cross-checking doctors with my insurance company to be sure they matched up.

    Interviewing Your Doctor

    When you go to your potential new doctor, keep in mind that you are hiring this person for the most important job there is: keeping you as healthy and active as possible!

    There are 2 kinds of first visits: you’ve been diagnosed & are being treated but want/need a new doctor, or, you think you have ME/CFS or FMS, and want to be evaluated.

    Unless the doctor you are seeing is one of the really big names in the ME/CFS or FMS world, and you are desperate to be seen by them, then keep in mind that you are interviewing them for a job, not just a patient seeing them for an evaluation.

    If your personalities clash, or you don’t like their style, and there are other doctor-candidates in your area, then go ahead and schedule the follow-up (unless they’re truly awful) but before then, try to get in to your next option.

    Do not be afraid to be bold and speak your mind, even at the first visit, especially if you’ve been sick a while and so have a “history.” How they respond will tell you how involved in treatment decisions you will be allowed to be as a patient.

    When I interviewed my PCP, I took her a printed overview of my illness – what I was diagnosed with and when – as well as a list of my meds, and some of my records. I explained the severity of my symptoms, and that I am a “very, very complicated patient.”

    As we talked through it, I really liked her style, how closely she listened, and she clearly understood that I was auditioning her for a job. She was young, but very interested in FMS, and very interested in expanding her knowledge of ME/CFS.

    Then I dropped the bombshell: my health insurance was changing, so I no longer had coverage for my Rheumatologist or Pain Management Specialist. I needed someone to prescribe all my meds, including my pain meds (many doctors simply won’t write those at all). I would continue to see my LLMD, but not nearly as often.

    I looked her in the eye and just asked her flat out, requesting she please be truthful with me, “Do you have the time and interest in taking on such a complicated patient?”

    She looked straight back at me and responded, “Absolutely!”

    I got very, very, lucky – she is definitely Type C. I see her monthly, and things have gotten even more complicated, but she has continued to do a fantastic job with a very “high maintenance” patient. She only has one other patient with ME/CFS, but is one of her practice’s specialists in Fibromyalgia.

    The First Visit – the Evaluation

    Your first visit to a new ME/CFS, or FMS, specialist for an evaluation should be long – a half hour at a bare minimum.

    Many of the best spend an hour or even two or three on the first visit, and at least 20 minutes on follow-ups, with 30 minutes to an hour being common. There are often reams of paperwork to fill out in the beginning about the onset of your illness, and usually, at least a checklist before each follow-up.

    Many specialists will order lots of lab tests, and sometimes x-rays, MRI’s, CT’s, etc, so don’t be surprised. The labs can be extensive. You don’t want to know what my record is for the number of tubes of blood drawn at one time. Just relax and think of something else.

    In Conclusion

    I know a number of patients who drive (or have someone drive them) hours to appointments with the best ME/CFS doctors out there, and they are often offered treatments that other patients aren’t.

    On the other hand, I know patients who got diagnosed by a Type A doctor, and who are still seeing them, still taking pretty much the same meds, years later, when there are new meds out. Sometimes they don’t have other options, but sometimes they don’t realize how different doctors can be, having never experienced a doctor anywhere approaching Type C.

    It’s my suggestion that unless you have a very good partnership with your doctor, and you feel you are receiving truly excellent care and being treated with respect, that you do the work of looking for someone else, and just get a second opinion on your case.

    It couldn’t hurt at all, and there might be things a different doctor would notice that the first one missed – and different treatment options.

    And that might make all the difference in the world.

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    “How Do You Do It?”

    “How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”

    It is a question I get asked often, and there are a number of answers.

    First, a rundown of what we’re dealing with.
    The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”

    Nothing could be further from the truth.

    Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.

    Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.

    But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”

    A really brief “refresher course” for those not familiar with our illnesses:

  • Many cannot leave their house except for medical appointments.
  • Most spend almost all day “vertically challenged” – either in bed, on the couch, or in a recliner, too utterly exhausted to move. There have been times I’m so exhausted, I’m acutely aware of the effort it takes just to breathe.
  • Most can’t cook for themselves, and some need assistance just to go to the bathroom.
  • Pain is usually a constant, even with the best of doctors – something many are lacking.
  • Many are severely sensitive to sound & light. They may eventually wind up living (if you can call it that) from their darkened bedroom, the shades drawn, speaking and being spoken to softly.
  • Cognitive problems get worse, and short term memory problems make things very difficult. Concentration, comprehension, “word-finding,” and spelling all become issues, and the more tired you are, the more pronounced the cognitive problems.
  • Me & Cherokee, about 1988


    “The Before Times”

    Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.

    Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).

    We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!

    But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.

    I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.

    Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.

    Grieving My Losses

    I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.

    All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.

    However, there are always new things to grieve, as I get sicker.

    Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.

    Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.

    So, I acknowledge the losses, but I then let them go, and embrace what I can still do.

    Blogging

    Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.

    Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.

    Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.

    There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.

    I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.

    Nature

    Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.

    But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).

    From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.

    Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.

    Beauty, natural beauty, is integral to my staying sane.

    Facebook

    I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.

    I am gratefulfor each and every one, and all the Love they bring into my heart and my life.

    Creativity

    It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.

    Gratitude

    (Bet ya saw this one coming.)
    Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.

    Sometimes…

    …none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.

    I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.

    Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…

    …or, all of the above.

    Getting By

    As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.

    Risky Decisions, or, Valcyte: the Very Scary Adventure Ends

    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.