Sunday, July 29, 2012

paging dr. house

i haven't logged a medical update since mid-april when i attempted an elimination diet (and failed when i fell off the wagon). i thought i ought to on the off-chance a fellow runner/eczema sufferer out there is looking for answers. unfortunately i don't have any, so hopefully you're just looking for someone to commiserate with. not a lot has changed, i'm still on the cyclosporine, and i got slack at chasing down doctors to figure out what's wrong these past few months. [note: a month of cyclo at walmart was $255 with my insurance "benefit". after a few emails with gracie, i found a local pharmacy that has it for $55/month. sold.]

on friday i had a follow-up at the dermatologist. re-raised the question of "why don't i sweat like i used to". originally he thought the sweat canals (i'm sure that's the legit term) were clogged or inflamed from the eczema and that maybe the cyclo would help bring those back to normal. unfortunately i still haven't sweat normally while on the cyclo, and i think it's safe to say it's hot enough to where i should be sweating! he said he'd do some researching.

i'm starting to wean off the cyclo. i'm coming up on six-months and "they" say you shouldn't be on it too long because you could cause long-term damage to your kidneys. the doc is leaning towards going on a different immunosuppressant (one that causes long-term damage to your liver, you know, to give the kidneys a break) and i asked him why can't we do some exploring to find out what is causing the problem. i don't want to continue to treat the symptom; i need to figure out the root of the problem.

now if i could just find a doctor someone willing to go all dr. house on me...

gregory house

ps: if you make the egg cupcakes, be sure to use cupcake liners. or an entire can of crisco. i soaked the pan for 5 days and still had to scrub and scrape to get the egg remnants off.

pps: though i haven't been doing my normal level of running for a year, i'm still just as hard-headed as ever. i strained my back on the 4th and have been easing back into running/bootcamp since. monday's workout involved deadlifts, 65lbs, and i forgot i shouldn't be doing that just yet. setback another week, boo.

18 comments:

  1. UGH! Fingers crossed you can find some real answers soon. I have to agree with trying to find the cause rather than just treating the symptoms.

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  2. I suppose you've already done this, but I also struggle with really bad eczema and I ended up switching out all of my lotions, soap, shampoo, laundry detergent, sunscreen etc. The combination works wonders for me!! I mostly use vanicream brand everything (exceptions are free & clear shampoo and conditioner and all free&clear detergent, no fabric softener) and most of it I cannot find locally so I have to mail order.

    I also have problems with tree nuts, so I don't eat those anymore.

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  3. Really sorry about your back :(. That stinks that with all the running you did, you got hurt doing deadlifts, but that's how I've always been too, anytime I've been hurt or injured it was from a group class or CrossFit or something, never actually running. Weird huh.

    I hope you figure out what's wrong with not sweating. You should definitely be sweating because the heat is crazy out! I mean here we can hardly walk outside without sweating. Hope the docs figure something out and it's not overly expensive, $255 is a ton and even $55 a month is steep.

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  4. I hate to be devil's advocate, but....
    Sometimes (in medicine) we never do find out the exact cause of things. We come across drugs that seem to help symptoms usually by complete accident. In other words, when a drug is being used for something, we notice that it helps out or sometimes makes worse other issues. Using cyclosporine for eczema was found by using it on patients for a different reason and those who suffered from eczema had relief from their symptoms, so now they prescribe it for eczema patients!
    I can understand that you're frustrated-just keep being your own advocate and keep talking with people, looking up on internet, reading, etc.....not everyone responds the same to things, so keep at it until you're comfortable. I'm always keeping my ears out for something on this end!

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  5. I'm really, really confused. Cyclosporine can cause hypERhidrosis. WTF.

    I really think you should hunt down an immunologist or rheumatologist. It sounds like your symptoms indicate a deeper problem. I'm starting to worry about you. If you aren't sweating you could be in terrible danger. I'm not trying to be alarmist but just want you to be safe.

    By the way there's nothing wrong with trying an immunosuppressant vacation - a short time without drug - just to see if you've "reset". But then, you risk relapsing.

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  6. You sound not too depressed about it on here but you must have your days and weeks where you are just so sick of it. I wish Dr. House could treat you. Good luck.

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  7. Not supposed to be doing 65lb dead lifts? Duh. You are supposed to be doing 75lbs! kidding!

    Totally sucks about the medical condition though. Hope you can find a solution!!!

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  8. I always thought it would be really cool to have a real live Dr. House if I needed one. I hope someone does enough digging to get some answers for you.

    I used to make egg things like that and a bit of cooking spray did the trick!

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  9. For crying out loud... I am sorry they haven't figured out what is causing your problems. So frustrating! We have dealt with that kind of frustration with two of our kids and I found that you have to just keep fighting, pushing, and not taking no for an answer. And i agree 100% with not just treating the symptoms but working to figure out the cause of them is the best way to go. Good luck with everything!

    And boo to bootcamp and your poor back. Go easy on yourself!

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  10. I am so frustrated with doctors right now and I don't even have major health issues. It feels like many of them are just prescribing stuff without questioning the root cause.

    In the last couple of months, I developed eczema on my face. It's not pretty, but it's not a health crisis. I refused to see a dermatologist, because they just give your cordisol or antibiotics to clear it up and once you stop taking the stuff, it all comes back.

    So I started taking Standard Process supplements per my chiros instructions. The first supplement mix made it worse, but we swapped one product out last Friday and I can already see major improvements. Just hoping that it keeps on getting better.

    I know, you tried SP products before, but maybe it's worth experimenting with another mix??

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  11. It's that stubborn streak that will get you back!

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  12. Well, if you're going to have kidney disease, it's nice to add liver disease to that so that you don't stress over just ONE thing. :)

    Seriously though, I'm glad your young and have the energy to fight this thing. I'd be crawled up in a ball in my closet! I agree that you need to find the root of the problem and not slap Bandaids on the owie....though understandably those Bandaids really help you function through life a bit better. But now it's time for step 2 (or 49,583) and hoping someone out there can find a cause. I'm pretty sure M&Ms aren't the culprit though! :)

    xo

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    Replies
    1. "you're" .... one shouldn't leave comments at 4:45am with 2 hours of sleep. I hate nights like this! Back to that age thing....

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  13. I hope you can find answers soon. I know that skin issues are not easily diagnosed (or at least that's how it seems each time I've gone to (different) dermatologists. They more or less seem to guess by just looking at it instead of doing any other tests/analysis. I might have eczema but it must be mild compared to what you are experiencing. My itchy rashes come and go and pop up in random places (my hips, knees, elbows, etc). I treat it with a steroid cream and it is usually gone within a few days.

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  14. Have you thought about alternative practices? Acupuncture? Shit like that?

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  15. Wow, I can't imagine how frustrating this must be for you. Your attitude is inspiring, but like someone said above, I am sure there are days that are really difficult. Keep pushing for answers and forcing doctors to do research and to ask the questions of their peers that they need to be asking. Good luck on this journey back to getting healthy.

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  16. I couldn't imagine what would happen to me if I didn't sweat normally for a run. I'd probably fry my man engine in 6 miles and boil from the inside. I had to fill up my hydration pack 4 times yesterday on our long run. Hopefully someone can figure out what's up with you. Treating symptoms has become a huge problem in medical, but I hope you find someone that's more concerned with getting to the bottom of things.

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  17. silicone pan for the eggs, maybe?

    Sorry you're still struggling with the skin issues. :(

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