Thursday, March 11, 2010

TMI Thursdays... kind of.

My new favorite humor/life blogger, Lilu, started this blog trend called "TMI Thursdays."  Now, to preface this post, this is not your average TMI Thursday post.  So, Lilu, I adore you and read these posts voraciously, but you should probably not share this one with your readers, seeing as illness tends to make people way more uncomfortable than lewdness, drunkness, and STDs... put together.

Sad, but true?

Anyway, in mild concurrence with the spirit of the event, I must confide that I am slightly drunk.  Yup. Had multiple glasses of a really classy wine with the moniker, "Cat Pee."  I'm a *classy* gal, yessiree.

I do not drink that often since it sometimes interferes with my many, many meds.  You guys probably understand this.

But, you (hopefully!) also may have read my post where I shared, among other things, my undying love for anything Italian.  This love DEFINITELY extends to wine.  And pasta.   And really good pizza that you can only find in Italy.  And clothes.  Oh, and did I mention, WINE AND PASTA.


Thanks for the many congratulations on my recent Lyme diagnosis.  I too am thrilled to have an answer (though, as we know, in medical things, it may not be the only answer) and a clear (well, sort of) treatment path.  But, here's the kicker:

Once again, there is no quick fix, no magic pill, no easy out.  The goal here is to put the Lyme into remission, not cure it completely (since that's not possible).  That means that many of the changes I have to make (on top of the MANY changes I've already made) have to be permanent.  This isn't a "I'll do this to get better, then go back to my normal life" type of treatment.

Anyway, Lyme bacteria feed on sugars and carbs, much like myself.  In order to get rid of these Lymie nuisances, I have to eliminate sugar and carbs from my diet.  That means no pasta, no bread, no coffee (except decaf, sugar-free), no soda (same as coffee), no ORANGE JUICE (which I drink every morning) or fruit juice or sugary fruits of any kind, no cereal, and, most devastatingly, NO WINE WHATSOEVER.

*Sobs softly.*

The addition of antibiotics makes this new diet even MORE important since the antibiotics will target all bacteria, good AND bad, and I want to give the good kind more of a fighting chance than the bad, Lymey kind.  Also, long-term antibiotics can lead to really gross side effects like thrush, where bad bacteria grow all up in your mouth and turn your tongue beige, then they go into your digestive track and cause all kinds of nasty business.  Not cute.

(Oh yeah, that bacteria grossness? That's just the beginning of my TMI Thursday).

In addition to this grossness, I also have something called Babesia, a co-infection for Lyme disease.  It's a parasite, ya'll.  How gross is that?  It's born in the tick, moves through the deer, my cat, and finally onto me, where it gestates and breeds and junk.  SICK.  So I'm going on treatment for that as well, and my new diet will help there as well.

Some of you that have chronic illnesses that severely limit your diets will probably think I'm being a big baby, and I totally am.  But I've given up my lifestyle and my independence already.  I've been lucky enough to not have to diet for weight reasons, and when I've eaten healthier the last couple years, it's definitely been fruit-intensive (now off-limits).

So I'm whiny.  A bit whiny.  But I'm going to try to make this my last whiny post.  I'm already looking up great recipes on Lymenaide; I'm remembering my love for Lyme-ok'd foods like goat cheese, avocado, and tofu; and I'm currently having my last big hoo-rah.  Yeah, you heard me right.  I'm hoo-rah-ing.  I don't start antibiotics til tomorrow, so today I had a sub, pasta, and a ton of wine.  I also had a Starbucks latte and a regular cherry coke.  Basically, I ate terribly today, because baby, this is my Fat Tuesday, and my Lent's going to last a long frikkin' time.

I'm still so grateful for my diagnosis.  I'm 100% willing and ready to go every mile I can.  Nothing is equal in worth to gaining back my life and my freedom.


Gah, this wine is GOOD.

Lots of drunk-punch-love to you all,

**What about your illness grosses you out the most?  Feel free to share... we know how it is. :-/


  1. Awww sweetie, I know this feeling all too well.
    I'm on a virtually no food diet and you are like, cut me a break world! Is it not bad enough that I'm in pain and without energy and money all the time?!?!?!?

    But apparently not. You could get better though!!!!!

  2. Wow, Robyn, I hadn't heard about your Lyme diagnosis yet (I'm behind on blogs). I just got Lyme 18 months ago (I've had CFS for 8 years) and posted lots of Lyme info on my blog today.

    Yes, you're right - absolutely no alcohol with Lyme because the Lyme spirochetes (sp?) feed on it, but alcohol makes CFS symptoms worse, too.

    And I might attract some hate mail here, but I would disagree with a couple of things here. I think whether Lyme can be cured and whether it's necessary to give up sugar are both controversial concepts. My Lyme specialist has never suggested I give up sugar, though I know some are adamant about it. He also feels confident that I WILL get rid of Lyme completely and get off docycyline eventually. It all depends on how long you've had Lyme and how you respond to treatment. the longer you've had it before starting treatment (probably only a month or two for me), the harder it is to get rid of. In my personal experience CFS does make it even more of a challenge. But I know LOTS and LOTS of people around here (where Lyme is practically an epidemic) who got Lyme, were diagnosed quickly, and got rid of it with 8 weeks of abx and have never had symptoms again. CFS definitely makes it more of a challenge.

    As for the antibiotics and yeast overgrowth (the reason for the sugar hysteria), it is very easily prevented with high doses of a high-quality probiotic, taken at least 3 hours apart from when you take antibiotics. When I started with the Lyme specialist and told him I already take probiotic for CFS, he told me to double the dose (I now take 2 probiotics, twice a day, opposite when I take abx) ...I have never had any stomach upset or other signs of yeast overgrowth or thrush, even on very high-dose doxycyline for 18 months now.

    So, it may not be as bad as it seems. Although, do you know about herx reactions? That you will feel a lot worse before you start to improve? Check out my blog post today - lots of links there for more info.

    At least you have some answers now and a clear treatment path!


  3. Annie-- Exactly my feelings! But you're right; I could get better, and that's celebratory, no matter the sacrifices!

    Sue-- Good to hear from you! I'm behind on blogs too, so I know what you mean. :) And yes, Lyme can be cured-- sorry for my mis-speaking-- but one of the bands I have on my Western blot shows I've had Lyme more than a year. So, for me, remission is the goal. In fact, Lyme might be the chicken that came before my CFS egg. I'm still trying to pinpoint when I probably contracted it, but I'm currently just using major flares to estimate.

    I am taking some pretty high doses of probiotics. I've moved up to a much higher dose specifically for this treatment plan, much like you did. However, my doctor's still urging me toward a no-sugar diet. My only real issue with this is the sugar-high fruits. I don't have that much of a sweet tooth (lucky me, right), but I adore sugar-intensive fruits like oranges, strawberries, and bananas. I imagine I can probably add these back after the antibiotics treatment.

    I'm looking into your blog post, and I thank you for commenting. We're not that far away, N. Virginia and Delaware. I have an ex in Delaware (random information). I'm prepping for the herx reactions and considering dropping out of school if these are significant. I'm glad we can chat about our similar diagnoses now!


  4. No orange juice? Oh, man. You've earned the right to whine today. Nobody will judge you.

  5. Robyn -

    Yes, it's quite possible that it's been Lyme all along for you. What makes it even harder to separate Lyme and CFS is that 10% of the people who get Lyme go on to develop CFS (it's a known CFS trigger, like mono is), so you could possibly have both...or it might have been Lyme all along. Hard to tell at this point, though from what I've read, Lyme doesn't usually cause sore throats or exercise intolerance (though one of the co-infections causes exercise intolerance and I can't remember which one). So, those symptoms would point to CFS as well. Whichever it is, treating the Lyme should help a lot!! It must feel great to finally have some concrete answers and a path forward. Yes, you should prepare for possibly a severe herx if you've been infected for a year, but the good news is that the herx is a sign that the treatment is working - a light at the end of the tunnel.

    My Lyme doc also put me on a supplement called Artemisinin. I also take Olive Leaf - I took it before the Lyme but it's even more helpful now (Olive leaf is an anti-viral, antibiotic, and anti-fungal). Finally, there have been some studies showing that anti-fungal medications like Diflucan can help with Lyme too.

    Good luck - keep us posted! There are actually lots of us in the CFS blog world who also have Lyme, so you're in good company!


  6. I ignored the TMI warnings and continued to read the post while eating my lunch... BIG mistake! lol. Haven't got anything useful to say about the Lyme thing (don't know much about it), but I feel your pain for having to give up the wine- I can only tolerate one glass of the gorgeous stuff...I'm a really cheap date! Good luck with it all.

  7. Hi, me again!
    I've nominated you for a happiness award. Can't wait to read your top ten!

    More info:

    FG x

  8. Wow Robyn - I can't comment on the Lyme like Sue can since I have never had to deal with that. But I can deal with diet change and having to give up a lot of things.

    I'm glad that you are surround by several really knowledgeable bloggers when it comes to Lyme disease that can help you walk out this part of your journey.

    Hang in there. You are in my thoughts and prayers!

  9. hehehe love the funny pictures! ill try out those words on people when they are drunk :P and the last pic is cute too!
    following you! follow me back if you want :)

  10. I feel for you, wine and pasta are easy to love. But I'm glad you're giving it a try going without. I think changing my diet has really helped me, I hope you'll say some same someday, even if it takes awhile!

    In reply to your las comment (sorry it took so long, had a couple of bad weeks) we are definitely coming from similar places. Reading your blog reminds me so much of what it was like for me when I was in college. I finally stopped trying as of last year though, but I can't stop thinking about trying again! I hope you are taking things slow, doing a smaller amount of classes, registering with disability, etc.

    As for the curing pills, I think they are pretty common. I got them at a homeopathic shop because the woman who recommended them thought they were homeopathic, but I think you can get them anywhere that sells Chinese herbs. Or you can get them online here, these are the exact same ones I had. I've seen others though with longer lists of ingredients. They really help with my nausea most of the time, but not always. What's really helped is the custom herbal medicine I got from my acupuncturist. I wish I had some now, but I'm visiting my parents across the country.

    Anyway, thanks for being my bloggy-friend too! I'm really enjoying your posts.


  11. You're such an interesting person. Most disgusting thing about my illness?......ummmm... my own defence mechanisms slowly killing my nerves?..
    ... yeah, that'll do it.
    Oh and I totally get the whole 'Meds have become my most annoying past-time' ordeal, I have to inject myself in my muscle once a week with meds that make me SOOO sick for a couple of days.


    Hope your well!


  12. great post! I can totally understand, yet also made me laugh. pasta and wine are ze best!




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