Review of the fatigue specialist visit

(cross-posted from my LJ, but I thought people here might want to know) And yes, the next podcast is coming out soon, just as soon as I’m done with this lovely bug my husband brought home…

So, the CFS specialist I saw in LA about 2 weeks back… This was a mixed bag. If you want to know their name/contact info, message me. That said, I cannot recommend them very heartily at all, but it is a good example of how to evaluate specialty clinics from a knowledgeable patient perspective.

For those of you who don’t know me personally, let me give you the shortest version of some pertinent facts: I attended the first half of medical school, left, and got a Masters in Cell and Molecular Bio, pending dissertation… thank you, EBV mononucleosis and chronic fatigue round 1. I fully recovered in 8 months. A year later, I got a horrid viral-fever-chest-sinus-throat thingy on vacation in Las Vegas. Unfortunately, it didn’t stay in Vegas, and a familiar-feeling spiral of nonrecovery, daily and weekly progressive brainfog with all-weekend crashing, and needing 11 hours of sleep/24 hours just to function ensued. That was 1.5 years ago. Enter voluntary part-time work schedule (luckily, my husband is supportive AND has good medical benefits), change of primary care doc, and no normal lab-verifiable cause for fatigue. I didn’t quite meet CDC definitions of chronic fatigue syndrome, but came close enough… my very thorough doc (an internal med doc, very thorough in the test ordering but a bit timid w the unknown) wanted me to find a chronic fatigue specialist to help find a diagnosis and treatment plan, as no one within her network had XP with this either.

Finding a specialist with an M.D. (not chiropracty, acupuncture, hypnotherapy or other things that no well-controlled studies have given me significant enough reason to spend my limited resources on (remember, very tired and now on PT pay vs med school loans…. I didn’t need busy-work or expensive long shots!)…. sigh. I looked every which way, the clinicaltrials.gov site pointed me to 2 clinical trials within travelable distance, and I should hear from those docs about seeing me middle of 2009 according to their desk staff. Looooong wait lists. I got desperate and put out a cry of help to the podcast sphere, having many contacts there with many contacts and listeners. Someone pointed me to this practice. By this time, I had gotten so worn down, even with the PT schedule, that I was starting to not be able to compensate any more. I was making mistakes, or more accurately, not catching other peoples’ mistakes. I work in QA in biotech. I requested 6 weeks medical leave to rest and get myself back to functionality before a big project gathers its head of steam and crashes into my workload. The rest seems to be helping a bit. OK, now you’re caught up with the pertinent facts.

Review of my experiences at the specialty clinic:
Weird thing #1: this multidoc practice does not bill to insurance. Their website explained that they have 1-hour long visits to explore these complex conditions, and no insurance will reimburse for that adequately. Also, some of the lab testing was unlikely to be reimbursed by insurance, and all services were to be paid at the time they are done. They do provide receipts with the typical billing codes and other info required for the patient to submit for whatever reimbursement their particular insurance will give. The fee for the visit was not (per time) that different than my regular doc visit. Weird, suspicious, but definitely plausible. They did use a national lab service which took my insurance. I haven’t yet seen what my copays/uncovered lab fees will be.

First bigtime negative: it is not typical medical practice for the doc to sell you stuff directly. In the US, pharmacies are separated from prescribers. Eye docs have interesting ways of meeting this requirement behind the scenes, but that’s off-topic here. Studies show that a fiscal interest on the part of the doc (investment, paid work with a drug company, etc) has a significant effect on the treatment chosen which may/not conflict with what’s actually best for the patient. So I disregarded all specialty clinics that had online stores on their websites in my search. Unfortunately, when I got to this clinic in person, there were rows and rows of bottles on a table behind the reception desk and gift-bags with name tags on them on a shelf for pickup. Sinking feeling in gut but keeping mind open that there might be good reasons, I continued to the doc’s office.

First positive: the office staff and doc were friendly, and the doc was responsive (with chuckle) to the post-it on my patient questionaire (20 pages) that I was not there to discuss acupuncture, “it’s in your head” theories, or “learning to live with my limitations”. Hearing that gets irksome real fast, as anyone dealing with a not-yet-understood illness can tell you. The doc I saw (several in the practice)

Second positive: review of said questionaire and directed but thorough history and physical. Had some tests in-office, including urine iodine to check for shortage and a reflex-charting machine (Thyroflex?) to measure the length of time each phase of the reflex as key to thyroid function.

Third positive: the list of labs ordered showed thought into wider-ranging causes of fatigue than my doc had. Not exactly silly-season ideas, just not what had been investigated before, including reverse T3 levels, HHV6 antibodies, chronic Lyme disease test, NK function/# test, and a total of 12 tubes of blood of other stuff. One of the tests had to be done on a not-Friday, so I would find a testing station by this lab in my area the next week. The doc discussed the general fatigue treatment strategy and a few options, and we were to have a phone-followup in ~10 days when he would have the lab results.

Second bigtime negative: before these labs were even drawn, he was prescribing 3 supplements with names like Adrenal support, Energy-Max, and something else. The tests on my adrenal function weren’t drawn yet. The rational seemed based on “Some patients feel lots better after taking these” but no detailed response to the following questions (and attempts to clarify these question): what proportion of patients are helped, what’s in this, and what is it supposed to do? BTW, “boosting the immune system” and “providing energy” don’t count as meaningful answers. I wanted to know what cell, chemical, or functional thing in my body they interacted with, accepting that we might not yet know how they work. Now I accept that many psychosomatic patients must present themselves to fatigue and pain experts, and the first treatment tried with sufficient believability/personality behind it will work for them. That doesn’t mean it’s good clinical practice.

Third bigtime negative: When I got to the checkout-and-pay station, 2 of those supplements were branded with the medical practice’s name on the label. They were all multi-ingredient, one had lots of unfamiliar plants in it (and I have many and severe plant allergies), and came in those gift bags I saw earlier. While she was printing up my paperwork, I was scanning the bottles, which all had stickers to show un/opened lidness and were returnable if unopened within 30 days. The receptionist put some pressure on me when I started showing some… I don’t know, balkiness? hesitation?…. and I decided not to cause a scene in the office but talk to my regular doc first and return them by mail if she seconded my not-quite-right-here feeling. If I wasn’t really hopeful about the 2nd and 3rd positive points above, I wouldn’t have bought them at all, but I was feeling worried that they would refuse the followup appointment or not release my test results to me and my doc without expense and fuss if I even politely caused a scene in front of other patients. Not a good vibe.

Fourth bigtime negative: additional tsotchke sales and bribery. As I left the clinic, there were additional supplements on the counter for sale without the doc’s prescribing them, a DVD from the last NIH chronic fatigue/pain conference for $35 (not likely to be patient-directed info… that’s a research conference), and a sign offering account credit in exchange for testimonials. See first negative: testimonials for money. Oh yeah, that’s reliable information.

Phone followup review:
Turns out I have exposure to EBV, HHV6, and Mycoplasma, high-end reverse T3 and low-end-normal T3 levels, and low-end cortisol levels, although that was drawn in the afternoon, not in the early morning as it should have been. Why not? because he didn’t order it that way. Also, the iron and DHEA supplements I’ve been taking under my primary care doc’s supervision are doing what they should, always nice to see.

First positive: when I explained that I hadn’t taken the supplements because I was concerned about medicine interactions and allergies and because it would be impossible to tell if the just-started medical leave or the supplements caused any improvements (hey, it’s PART of the truth!), he accepted that smoothly.

Second positive: he generated a mostly reasonable treatment plan: treat the T3 imbalance, treat the adrenal dysfunction, antivirals vs the EBV and HHV6. He answered my question that we really DON’t know if EBV reactivates like some of the other integrative viruses do. Some studies say yes, others say no. We discussed treating primary cause (infection-related history) vs current symptoms (T3 and adrenal, and of course fatigue and brainfog), and he said that he’s seen his patients respond better to anti-viral treatments after getting in better shape re: the symptoms. He also prescribed high-dose B12 shots as immunomodulators. There is some thought in the research literature I’ve read that considers poor host response to viruses as a possible cause for CFS, and I have since found some research on B12’s influence on the immune system that doesn’t highly support this idea, but it’s feasible. Walking the line between skeptic and closed-mindedness can be a tricky thing, sometimes.

First major negative: He was again suggesting the home-brand adrenal supplement, but again could not explain what it did or contained. I told him I wasn’t comfortable with that, and he dropped the idea immediately and moved on. Guess it wan’st that strong a recommendation? Actually, the visit also had a strange pattern of him suggesting stuff, and if I didn’t respond positively or if I just sat there, waiting to hear more, he dropped those ideas and moved on. Felt like a softsell pitch, you know? Not what I want from my medical expert advisor.

Second major negative: He wanted me to use a home-brand T3 only medication. I asked if there was a suitable thyroid medication my insurance might cover, and he readily said we could try Armour Thyroid, which is a standard combo T3/T4, but the T4 might defeat the purpose. (In the body, T4 becomes T3, a short-lived active hormone, and reverseT3, an inhibitor of T3 and by-product. This was news to me, but Pubmed research supports this.) Here’s the really, really bad part about this: a little dabbling on the FDA website revealed that a T3-only medication has been on the US market since the 1950s. It’s called Cytomel, and its labeling was last revised in 2002, and it’s made by a pretty standard company. If it was really new, I could accept that he just hadn’t heard of it. But this isn’t new, and he wanted to sell his homebrand instead.

So in overnight mail, I received my scrip for Armour thyroid (dessicated pig thyroid… yum) and the antiviral that the Stanford study used successfully in a small number of EBV and HHV6 positive patients with similar symtoms, the high-dose B12 shots, and all the lab paperwork. I’m seeing my doc with it this coming week, and I’m really hoping she’ll monitor/prescribe appropriate thryroid therapy and monitor the antiviral therapy. I’m interested in what she has to say about the shots (assuredly unreturnable), but I have yet to research B12 injectable commercial availability. Why, when I have syringes already in my fridge? Because a standard commercial prescription product that has been on the market for any length of time has been taken by thousands of people and general risks and drug interactions are known. That has value for me, and my insurance will probably pay for most of it.

I won’t 100% universally decry this doc, as some of the test results are leading to reasonable treatment plans that might really help. However, unless you have a knowledge base to sniff out the BS and the confidence to sidestep it, you could get taken for a helluva expensive ride. As it was, including the drive and hotel, this adventure in patienthood cost me over $1k USD, and I don’t know how much my insurance will reimburse (or not cover in the case of labs), but I’m guesstimating $200-300 reimbursement. Fellow sick-and-tired people, leave a comment, email, or Twitter-message me if you have questions. It might take me a few days to have good-brain-time to respond adequately, but I will.
CF

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6 Responses to “Review of the fatigue specialist visit”

  1. John Says:

    Welcome to the world of CFS!

    Things you might want to keep up with are the CFIDS Newsletter, http://www.cfids.org/subscribe.asp, signing up for pubmed alerts, etc. There’s a wealth of info out there, some of which is legit, some of which is scam, and it helps to become educated on which is which. Even with published research, there’s a huge dichotomy is what’s legit and what’s not. For instance, just about anything that supports Cognitive Behavior Therapy(CBT) or Graded Exercise Therapy(GET) is written by psychiatrists in England or the Netherlands who use a definition of CFS called the Oxford Criteria, which is roundly criticized by legitimate researchers because of the heterogeneous nature of the patients selected, ie it’s a mixed bag of people with depression, people who are burned out, and somewhere mixed in there are actual CFS cases. Basically, there’s a whole universe of politics, people, and theories relating to CFS, which is interesting to the nth degree, but it really helps to know the background of who’s saying what.

    Also is the book Osler’s Web. It tells the story of how ‘CFS’ came about, and in the 4+ years I’ve been researching CFS since becoming housebound, this book has been the single most informative thing I’ve come across. Cannot recommend highly enough to anyone who is in any way interested in CFS.

    The English ME patient websites, MEAction, ME Association, ME Research UK, Invest in ME, etc. are also very good sources of info since the CFIDS Association, their American counterpart, is partly funded by the CDC, which is itself widely criticized by the patient community, so it seems kind of hamstrung on what it can and cannot say, and who it can and cannot criticize.

    One last recommendation is to look around for the half dozen or so gene expression studies that have been done in the last few years, as those are going to be very key in developing CFS research in the upcoming years, for example Dr. Jonathan Kerr’s seven different subtypes in CFS/ME based on gene expression matched with clinical presentations, and Dr. Takuya Saiki’s et al’s recent paper on Marker Genes for Differential Diagnosis of CFS.
    http://www.ncbi.nlm.nih.gov/pubmed/18596870

  2. The Fixed Kitty Says:

    Thank you! Yes, the CBT stuff irritates me to no end. If you catch a virus and have physical problems as a result (certainly the case the first time I had CFS-like experience following mono), you should just think yourself better? *slowly backing away from rant* Likewise, the CFIDS society is mainly board-membered by psychologists. I have been following some of the ME sites, but thank you for listing some I hadn’t found!

    Haven’t read the book. I’ll check that out.

    I’m fascinated by the gene marker studies, but until some diagnostic criteria or treatment plans are tested using them, they remain academic. Fascinating, though!

    Thanks for the info, and I hope something comes along to help both of us!

  3. Linda Says:

    I am wondering why no one tried cortef for your fatigue. It is natural and saved my santity. I also thought I had CFS or one of the many other auto diseases. I did my reasearsh found a wonderful doc who gave me cortef and I was my old self again for the first time in 3 years. I also have low thyroid and am taking Armour. However it is making my joints hurt in my fingers. I found out the reason why and I got off of it till I can show the research to my doc and see what he says. I can;t tellyou how many people swear this man has saved their lives.

  4. The Fixed Kitty Says:

    Cortef is hydrocortisone, a powerful glucocorticoid. While the body produces its own hydrocortisone naturally, this industrially-made medication is part of the medical “big guns.”

    When needed and dosed appropriately, it can make night-and-day differences, yes. If it’s not what’s needed or not dosed appropriately, it can also cause very severe side effects. I don’t mean to scare you or anything, as you’ve been on it for 3 years and obviously your doc must be managing you well. :) I just didn’t have any of the other low-adrenal function signs to any significant degree, so it wasn’t tested until the looks-at-more-varied-fatigue-causes guy ran more tests than I’ve ever seen on an outpatient!

    My adrenal dysfunction is based on a single wrong-time-drawn and thus-not-very-reliable lab test. Hydrocortisone was discussed as a possible treatment to try, but the LA doc said (and I agree) that it risked being overkill with higher risk of those side effects if it wasn’t a real and significant deficiency. My own doc will probably, thorough as she is, rerun the tests appropriately and reexamine that possibility.

    I wish you the best of luck in your completely better life– wow! Appreciate and enjoy every day!– and with resolving the achy joints with your doc’s help, and thank you for sharing your personal experience. It’s so nice to hear “old self again” and know that it really does happen for people! Thanks for writing.
    -CF

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