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.


    Ash’s Advice: Part 2 – Your Life Is In YOUR Hands

    Note: Ash’s Advice is written by, me, Ash, a long-time patient with CFS/CFIDS/FMS/Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings – what I wish I was able to tell my younger, healthier self: the person I was before CFS/FMS pretty much destroyed my life. A series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: CFS/ME/FMS/Chronic Lyme, etc.

    Part 2: Your Life Is In YOUR Hands

    You were healthy & strong. You ate the right foods, were probably active outdoors, perhaps a hiker, camper, runner, or maybe just a normal person who never had to think much about your health.

    Then it all changed. You’re overwhelmingly tired all the time. You wake up feeling more tired than when you went to sleep. It takes everything you’ve got just to go to the grocery store, and you are even more exhausted for days afterward. You have headaches, perhaps constantly, and possibly migraines. You have pain… everywhere. Some spots are worse than others. No amount of Advil, Tylenol, or aspirin helps. You might have sore throats more days than not, with swollen lymph nodes. Nausea and light and sound sensitivity may be a near-constant. You might not be able to tolerate heat, or cold.

    And perhaps most distressingly, you are suddenly having lapses in memory, difficulty concentrating, trouble spelling or finding the correct word. You might get confused or overwhelmed in stores.

    You feel like hell. Like you’ve been run over by a Mack truck. Like you have the flu, only it goes on and on and on. Some days might be a little better and others a little bit worse, but you never, ever, feel like you used to. You start to forget what it’s like to wake up full of energy and excitement about the day’s activities. Everything, even taking a shower, is overwhelming painful or exhausting to do.

    You’ve either been diagnosed with CFS/FMS/CFIDS/ME/etc.  or you have a strong reason to believe you will be.

    Where do you go from here? The answer may not be the one you want to hear.

    Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and other Neuro-Immune Diseases,  are syndromes, a series of chain reactions in your body. There are many, many theories about the hows and whys. Your primary care provider (PCP) or family doctor has ruled out all the obvious things, likely handed you a prescription for Cymbalta, an antidepressant, for the fatigue, and Lyrica, for the pain/fatigue, and told you to live with it.

    But how do you do that? How do you explain this to friends and family, who tell you that you look fine. Or who wonder why you can be somewhat active one day, and then spend the next three days in bed.

    You have one job from here on in: Education. You must educate yourself as to the many theories about CFS/FMS, etc., learn all about the politics involved (and there’s a lot of politics), and find a doctor who knows what is going on but who won’t take advantage of you by pushing you into weeks, months, or years of experimental treatments (much harder than you might think).

    You must become your own doctor, in a sense. Give that a moment of thought. Your PCP probably has hundreds of patients. They may have only one or two with CFS, etc. They can’t spend their down-time going to conferences to learn about the latest developments, and tracking down the latest studies and scientific research papers  about CFS/FMS/Lyme, etc. You can’t count on them to understand what you’re feeling, because unless they’ve gone through this, or had a family member with CFS, etc., they have no way of understanding it. It’s out of reach.

    So despite the “brain fog” or “fibro-fog” you’re experiencing, you must do the work for them. You must find the doctors with the most experience, but not the ones that will exploit your pocketbook unnecessarily. You must learn about the side effects of every medication you take, and the longer you’re sick, the more the cascade of system failures progresses, the more medications you are going to find yourself taking.

    Neuro-Immune Diseases like CFS, FMS, Gulf War Illness (GWI), etc., are serious illnesses. They are progressive. Very, very few people recover. Some people may make a partial recovery, only to relapse later. Having one of these puts you at a much higher risk of dying at an earlier age, possibly from leukemia, lymphoma, one of the other cancers that often show up in patients ill with these… and also because it puts you at a much higher risk of suicide. When you lose pretty much everything, and are isolated & in pain constantly, suicide can start to look mighty appealing.

    My Story

    I got “unofficially sick” in around 1992, after a martial arts class mishap. I had a headache for six months. It slowly passed, for the most part, and I regained some of the strength & energy I had lost. But then in late 1998, it came back with a vengeance, following a very stressful divorce & months of sleep deprivation (these were the “triggers”). I thought I was having a series of sinus infections. Took multiple antibiotics. But the fatigue and headaches persisted. Finally, in early 1999, I was declared to have “CFS/FMS,” given a prescription for Zoloft & Gabapentin (Lyrica’s predecessor), and told this was just what it was.

    I knew I couldn’t live that way, so I moved to Virginia, back home with my mom, bringing along my 3 year old daughter (born at home with a midwife, so opposed to the “medical establishment” was I), my teenage daughter, and my home-based internet business.

    I saw specialists: an internal medicine specialist who said, yep, you have CFS/FMS, learn to live with it.

    Then a visit to Johns Hopkins (which I arranged myself) showed Neurally Mediated Hypotention (NMH, sometimes called POTS). This is classic CFS: the dysfunctioning of the autonomic nervous system. I got so dizzy whenever I stood up that I’d nearly faint. I got another pill for that: Florinef.

    I saw rheumatologist #1, who ran a few tests, then said, yep, you have CFS & FMS. She switched my meds around a little, and said come back in six months.

    Finally, I managed to get in to see Rheumatologist #2, who specializes in CFS, FMS, Lyme Disease & other tick-borne diseases, etc. She took a very different approach. First, there was an interview/exam that lasted nearly two hours. Then a series of x-rays. Finally, a tremendous number of labs, for what the internist & other rheumatologist laughingly called “zebras” – things so rare they are very unlikely to be an issue, so they aren’t tested for.

    But guess what? Rheumatologist #2 was right. I had positives to a lot of zebras – very high levels of antibodies to human parvovirus, Epstein-Barr Virus (EBV – the virus that causes Mono), mycoplasma pneumonia, several varieties of herpes, and more that I’ve forgotten over the years. (Internist, reviewing the results, said “No wonder you feel so bad!). X-rays showed “reactive inflammatory arthritis” in multiple joints & spine – a type of arthritis caused by the body’s inflammatory response to viral infections. And Myofascial Pain Syndrome.

    She was certain there was more – she thought I had “chronic Lyme,” a subject of great debate in the medical community. But the Lyme tests were very unreliable in those days, so we tested again and again… and in the meantime, I got prescribed more medicines than I have fingers. I also started my education in “chronic Lyme,” CFS & FMS.

    With her help, I improved enough to move away from my mom’s, into a home of my own, nestled in the Blue Ridge Mountains I’d loved since I was a child.

    But the challenges continued to pile up: severe bloating sent me to the hospital several times, ending with my gallbladder being removed. That caused the IBS (Irritable Bowel Syndrome – also common in CFS, FMS, etc.) to get even worse, so one more prescription was added – digestive enzymes. The constant sore throats & throat infections were addressed with a tonsillectomy – something you really don’t want to do as an adult.

    I learned, and learned, and learned more, about the way the human body works, how it responds to infections, how the cascade failures of different systems happens, what all the latest theories and experimental treatments were.

    And I’m still learning something new every single day.

    It was about this time that people started mistaking me for a doctor, because my language had changed – I used medical terms more and more frequently; while hospitalized with the bloating, the patient next to me – in for the same issue – was relieved by my understanding of how an MRI works and explanation of what she should expect. She asked my mother where my medical practice was located. Ha!

    Here’s what you have to understand: most doctor’s have little training or experience with CFS, FMS, “chronic Lyme”, tick-borne disease progression, etc.

    It is all very, very complicated, there’s conflicting evidence for all the primary theories, and very little funding for the study of these illnesses. So unless you are fortunate enough to find a center or doctor who specializes in these – few & far between – it’s now your job, for the sake of your health, your family, your future, to learn everything there is to learn, from mitochondrial dysfunction to XMRV, Lyme & it’s cohorts, supplements that might help or might hurt, and exactly what effect each and every medication is going to have on your body. You will probably become ultra-sensitive to medications, and need dose adjustments. You may have some of the more rare side effects associated with some of your medications, and your doctor may not even be aware those side effects exist – how could they possibly remember the side effects for every prescription out there?

    There are many websites that give good explanations of the mainstream concepts of Neuro-Immune Diseases like CFS, etc. There are many websites that promise a “cure” if you only give their nutritional supplements a try – and those can be very expensive. The latter can look like websites based in facts & studies, but may not be. There are blogs of the many victims of these illnesses, just like this one, all offering their own ideas. There are groups that post the latest medical research papers relating to your illnesses, and you need to join those groups, and read – and read again, however many times is necessary in order to understand and retain the information, quite the challenge when you find it hard to recall what you ate for breakfast.

    You also have to learn about labs: what labs are done for what, and what the results might – or might not – mean. Some are interpreted one way by one doctor, and another way entirely by a different doctor.

    Your doctor’s job is not to save you from the living hell of Neuro-Immune Diseases like CFS, FMS, Lyme, etc.

    Their job is to give you the best medical care they are aware of & agree with.

    Your job, from now on, is to become your own best caregiver, to learn about all the processes of these diseases, stay abreast of new developments & research, and bring something you think might be relevant to your doctor’s attention.

    Your job is to listen intently to your body, to try to unravel the mysteries within, to figure out which medications are helping, and which might be making things worse.

    Your job is to be your own patient advocate: to make hard decisions on things like experimental treatments or participating in a study if you are lucky enough to find one; working collaboratively with your doctor on your care; asking for labs you think might offer clarity; and asking for medications you think might help, even if they carry significant risk.

    And finally, your job is to explain your situation to your family and friends as best you can.

    This is a very complicated and controversial illness, by whatever name. And, it’s an “invisible illness.” You might feel like you’re on the verge of passing out, but the people around you might think you look fine, and therefore are fine. Families can fracture in all directions over this illness. Some people will never admit that you are really sick. You will find yourself isolated, because you are too damn tired & in too much pain to go to family gatherings, or have people over. You will try again and again to explain it, but sometimes, it’s a losing battle.

    But, there is hope. There are new developments all the time, and science is taking more of an interest in these illnesses because of the discovery of XMRV, and because the number of people afflicted is soaring. And with the internet, you have an opportunity to network with others who are as sick as you, those who are even sicker, and those who have been sick for much longer. We are something of a new family. We support each other. Cheer our achievements, and work for greater research to take place. You have a huge job ahead of you. But you are not alone in it.

    Welcome to the distressing world of Neuro-Immune Disease, CFS, FMS, ME, chronic Lyme, and GWI.

    You are in for the fight of your life – the fight for your life.

    Ash’s Advice: Part One of Many To Come

    Recently, friends have suggested that though I may be sick in body, I’m still a good writer, and that maybe through my writing I could find a way to help other people, especially other women, who are going through the trials and tribulations of chronic illness, whether it’s called:

    • Chronic Fatigue Syndrome (CFS)
    • Myalgic Encephalomyelitis (ME)
    • CFS/ME or ME/CFS
    • Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
    • Fibromyalgia Syndrome (FMS)
    • “chronic Lyme”
    • Virus Induced CNS Dysfunction (VICD)
    • or… the list goes on!

    Not all of these are exactly the same thing, but many of us out here receive a diagnosis of at least two of these, if not more!

    And there are all the things that go along with the above:

    • Neurally Mediated Hypotension (NMH) which is also called
    • POTS (Postural Orthostatic Tachycardia Syndrome
    • Adrenal Stress Syndrome
    • Reactivated EBV (Epstein-Barr Syndrome), or HHV-pick a number (Human Herpes Virus, of which there are quite a few varieties)
    • XMRV (Xenotropic Murine-Leukemia Related Virus) – the new retrovirus that seems to play a part (or not, depending on who you believe)

    It’s not bad enough that you get really sick, you’re exhausted constantly, in pain pretty much all the time, and suffer from cognitive impairment (“brain fog”), but you have to learn all this new medical lingo, while suffering from short-term memory loss, and become your own Patient Advocate!

    A Patient Advocate is someone who represents the patient, goes to doctor visits, keeps track of meds & their side effects, tracks test results, tracks down new doctors and investigates new treatments, studies the latest developments and passes this information on to doctors, arranges for tests and appointments, keeps lists of symptoms, etc. An excellent discussion of what a Patient Advocate does is at the CFS Patient Advocate’s Blog.

    But most people will not have a Patient Advocate – they will have to learn the lessons the hard way.

    There are many websites out there that give good information on what CFS, etc. is, though, really, that is a constantly changing thing, as scientists are learning new things all the time. And the shear number of sites can be overwhelming – especially since many of them are really supplement companies trying to peddle some herb or other nutritional supplement which they claim will cure your illness.

    So, I decided to start a series of posts in a new category: “Ash’s Advice,” which is not an attempt to replace the many comprehensive, medically related, websites, but to pass on some of the often hard-learned lessons of being a patient with any of these illnesses.  I’m going to try to keep these posts short, since 1.) It really makes my back hurt to use the computer, and 2.) If you’re a patient, dealing with cognitive & memory issues as I am, info needs to be short and to the point.

    Topics I hope to get to will include:

    • The importance of finding a good doctor, and how to find one. And what makes one good and another merely sufficient.
    • Dealing with your doctors
    • Lab tests you should insist upon – and what to do if your doctor disagrees
    • Learning the lingo
    • The Best Sites for Info on different topics
    • The usefulness of blogging & Facebook
    • Helping your family & friends understand
    • And lots of other things that don’t come to my currently mostly-blank mind.

    And that’s the end of part one!