going to see the LE MD...but first....

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

So I am going to see Kathleen Francis the LE MD on 1/31.

Here's my immediate issue. After 4 days off of Levaquin, I am having a flare-up. Both somewhat red and swollen.

I saved 2 pills for an emergency, so I took one and called the ID MD.

Should I even try to see an LE tomorrow? I'm in NYC so I have a lot more choices. 

I do have an appointment with the new LE next week, but again she is the sole LE where I work out in the country,

I thought about putting on my sleeve, but since I am not supposed to wear it for a cellulitis flare up...I guess I should skip it. Should I even be trying MLD or seeing an LE if I can get in?

Ironically I am supposed to go to a YSC event tonight, I really don't want to miss it.

I am back on the infection/LE chicken-egg merry-go-round.

Why I am such a problem child?????

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Cookie!!!!

    This rots. I seriously don't know what to tell you to do, other than take the levaquin. Even though I suspect that you have a lymphadema dermatitis syndrome rather than pure cellulitis, I am afraid any LE therapist wouldn't touch you tomorrow.

    I'm so glad you're going to see Kathleen Francis.

    I emailed Binney and asked her to consider this, because it's just so darn difficult--I can only imagine your frustration, but boy you have such an amazing attitude.

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Well, Cookie, how completely frustrating!

    January 31 just can't come soon enough, that's for sure. Hope you have a list of "events" going back to the beginning to show her, so she'll have a quick understanding of what you've been dealing with.

    No way a LE therapist will be able to do a thing for you tomorrow -- I'm so sorry! Let us know what the ID doctor says. You sure are putting him through his paces! Hope he's taking all of this in and comes to some reasonable decisions on how to proceed -- you need a BREAK!

    Hugs, prayers for healing,
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Cookie, when you're in NYC, Mary Reader, the former partner of my LE therapist, is well known to Kathleen Francis. She doesn't take insurance, but she's kind, good and knows a lot. Perhaps a call to her would be helpful.

    My LE therapist--Polly-- came to my house with muffins and arnica when I broke my hand, and called Mary to talk about how to proceed, and Mary had a patient break her arm the same day. I just know them as kind and good.

    Perhaps a phone consult would help you.

    I do agree with Binney: if you could write it all up and perhaps even fax it to her before you see her, you'll hit the ground running with Dr. Francis.

    Thinking about you.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

     Thank god y'all are here.

    SUPER COOKIE HUGS!

     Kira...the good news is I have a huge tub of really good steriod cream...so I can slap some on there.

    I have one more suspicion. I have had a few incidents of an odd rash. I had it biopsied earlier this year, it's not a fungus, but an allergy to fungus. (AMD? or something like that)

    I had a little bit of it on my arm this week. Maybe just maybe the medicine contributed in some way or maybe it caused the flare.

    I have delt with skin irritation all my life...but this is one of the few times I have ever had pain on a flare. Amost a muscle spasm. Plus swelling worse than ever.

    So I went to this breast cancer survivor cooking class tonight...OMG the food was healthy but so AWFUL.

    Sent hubby out for peanut butter.

    I am going to have a ton of records to see Francis. I suspect ID will put me back on the meds. At least I tolerate them well.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Cookie, Hope you got the peanut butter--that's healthy food!

    Every thing we think we know about "healthy food" changes: now low fat is out--leads to over eating and low carb is in, and I just saw a study that dairy fats lead to lower risk of diabetes--arghhh! 

    http://diabetes.webmd.com/news/20101219/dairy-fat-may-lower-diabetes-risk

    I think, obviously, your swelling/cellulitis/LE is multifactoral (duh)--but pain and swelling and redness, I think the Levaquin is wise.

    There was a poster presentation at the NLN conference about the prolonged breast redness after cellulitis, and how it is not infection, but inflammation.

    I'm sure there are both going on here--now if they'd just go away!

    Hope you're feeling better. 

    I saw this PBS presentation about the AntiCancer diet--by a psychiatrist who has had brain cancer twice, and he's just into the mediterranian diet. And, dark chocolate is good for you....

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

     KIRA and Co.

    The good news I think the pain redness and swelling is about 40% better. This sems to be what happens the first day I take meds.

    Now ID MD has suggested that this could be coincidence/placebo?

    I am going to call them in a few. I hate to go back on the Levaqin again if it's not necessary.

    ID even said it just seems to happen that people have a flare off going off meds, and not to freak out, but if I get the choice, I think I would give it a few more weeks, at least until I see Francis.

    I will say this, I always take levaquin at night with yogurt. I took it yesterday in middle of the day...yuk!

    Interesting about the red boobs....because I do have boob LE,but it has not been red since radiation.

    QUESTION: do you think any of these good NYC LE's do Saturdays. I will be here most weekends for the next month or so.

    Have a great cookie day!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Cookie, I think the private LE therapists willl likely do weekends--not the clinic based ones. I see my LE therapist on the weekends all the time: it works for her--with a young child--and it works great for me.

    PLACEBO??? Cut me a break! Yeah, your arm got red and swelled and it went away because of the power of your belief in a pill.

    After about 5-7 years of arguing that most children's ear infections do not need antibiotics, a new study just came out in NE Journal showing that for actual ear infections, augmentin works better than placebo. This is when "evidence based medicine" makes me want to scream, as all evidence is biased--inherently or not---and frequently studies aren't reproducible.

    So, he can't come up with a working diagnosis and says you're having a placebo response. I don't buy that.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2011

    Honestly he never said placebo...he said coincidence.

    I'm just trying to run down every possible reason I have a flare about 4 days after stopping meds.

    And like clockwork the first day on meds it gets 40-50 percent better.

    What he actually said is it seems like often patients have a "pink arm day" soon after stopping meds. He said that my improvement when I take antibiotics could be connected or could be a coincidence. I kind of filled in the placebo.

    I actually talked to the fellow covering for the fellow. 

    What we decided is that if I am seeing new LE person Thursday it would be a shame for that to be a waste if I just get dx'ed with cellulitis and get nothing done.

    So we are going to put me back Levaquin till I see Dr. Francis.

    My own personal theory is I was walking around with the infection for about 2 months before it was dxed. My onc says sometimes if it goes deep it takes a long time to clear it up, and perhaps that is just the deal.

    Apparently your tendons can rupture if you are on this too long.

    The other super frustrating thing is I have lost about 5 pound in the past two weeks, I was really really hoping this might help the LE. If anything I think I can see it better since my other arm is skinnier!

    Anyway, I had good news from the dentist today at least!!!!! I was supposed to have 5 tiny cavities filled, he wants to watch and wait for 6 more months since they are so small and may have been radiation related.

    I am in much better spirits since yesterday. 

    Thanks for all the help and I hope Kira's fracture is healing well.

    Cheers!

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