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confusedks

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Everything posted by confusedks

  1. confusedks
    Thanks Patti. I saw that spammer yesterday and I thought it was strange because you guys are always really good at making sure there are no spammers.
  2. confusedks
    Hey, does anyone know what the warning thing is next to my name? Update: I just woke up at about 3.30pm after having gone to bed at about 11pm. :o I guess I was REALLY tired! I'm still in a lot of pain, and I found out that I was supposed to be given pain medication from the surgeon. I sure hope this pain goes away soon, because it's really limiting...
  3. confusedks
    Well, I am exhausted all the time. It makes no difference in my symptoms, whatsoever. That is the main reason we don't do iron injections. Also, if insurance doesn't cover them (which they don't unless you're out of range), then it costs around $250 per IV...and that adds up really fast.
  4. confusedks
    I don't want to be a downer, but I'll just give my experience. I got severely anemic, my ferritin got down to 0. My hematologist said he had never ever seen numbers that low in his career. He totally freaked out. I went the next day and got Iron IV's because there was no way I could take oral iron. It hurt my stomach (severe pain) for HOURS after I would...
  5. confusedks
    I'm alive!!! That was no fun at all! I'm certainly glad it's over. The surgeon tried to talk us out of getting a port, and doing a PICC instead, but I kindly said no. It was about 4 hours altogether. They did a consult first and then asked if I'm allergic to any meds and I said yes and I told them what I'm allergic to. They usually give you a little...
  6. confusedks
    Yea I can take meds. They just said that I can't have any solids 12 hours before, and I can have liquids up to 2 hours before and to take all meds. I'll just skip the mepron dose. The other meds don't really require food.
  7. confusedks
    Hello everyone!!! Long time, no talk! I was in Vegas, just got back today in the afternoon. I am really tired, so I'm going to go to bed. I didn't have any internet access at the hotel, so I was totally lost without the computer! I am going in for port surgery tomorrow morning at about 11AM if everything goes as planned. I'm not really nervous...
  8. confusedks
    Happy Bday Rachel! :) I wanted to reply to lots of posts, but I will have to do it when I'm less drugged. Too out of it right now to make sense. Nite.
  9. confusedks
    Ohhhh I could have written that! We need to talk on the phone if you're up to it! I have LOTS to say about this! If you want to talk, I will PM you my phone number. My LLMD said basically the same thing to me. And I did tear up, and had to look away because I would have had a total meltdown in his office. It was the most amazing thing though for me...
  10. confusedks
    I'm going to visit a Lymie tonight! She's in the hospital and her mom called me and asked if I would go visit her because she needs some cheering up. I don't have too much time since I'm supposed to leave tomorrow for Vegas, but I couldn't not go visit this girl. Carla, this is the girl on LN whose mom wrote about her being hospitalized for being underweight...
  11. confusedks
    Carla, Why the sudden interest in ART? I'm just curious. I talked to my mom about seeing Dr Amy and we decided we will give IV abx a few months to see how I respond, then if things aren't changing, we will see Dr Amy. We would do it anyway, but money has to be taken into consideration. On a random side note...Ambien stopped working for me a...
  12. confusedks
    That might happen. Some LLMD's are willing to talk to PCP's and explain what they are doing treatment wise. And then some PCP's are willing to follow you still. Some are not though. I haven't gone back to my PCP because I see my LLMD every month and my PCP was a bit of a jerk.
  13. confusedks
    I can express myself too, but it takes a while. The thing I'm REALLY good at, is pretending everything is okay! I'll never forget when I was in the hospital and I was in a lot of pain and the nurse asked me how I was doing, and I said "fine." So she didn't give me more pain meds. Then about 10 minutes later, I called her in and was like "ok, you gotta know...
  14. confusedks
    Rachel, I can relate to the not being able to cry. I've been going through LOTS of stuff...just stuff. Some of it is yucky and some of it is great, but I have been SO unemotional about it all. I can't cry...most people have the opposite problem! LOL! My mom, if you LOOK at her in a "strange" way she cries. It's like I'm in shock and can't...
  15. confusedks
    I can't offer too much advise as far as nausea, but I do have something that might help. I deal with severe nausea a lot of the time and the only thing that helps take the edge off (so I can stop sweating, and swallowing to prevent vomiting) is Zofran ODT. It dissolves on your tongue and it has been a great help for me. It is a prescription medication so...
  16. confusedks
    Sheesh...shipping is so expensive!
  17. confusedks
    The site is Open Original Shared Link. Hope that helps. I checked, it's $55 for the strips and "only" $32 for shipping...but I think shipping is different depending on where you live.
  18. confusedks
    Yea, I'm going through stuff with my counselor too! It's no fun at all! If you ever want to talk, you know where to find me. Yea, we did pay that stupid shipping charge! I actually think it was $32 for shipping and $55 for the strips...not so sure though. Actually, it's really interesting. My folate is always too high! The more...
  19. confusedks
    Yay Carla! Glad your herx ended!! I was just looking over some lab work from when I was in the hospital. It turns out that my WBC dropped from 7.4 to 5.8 in 2 days!! The first number is from before I had the epidural and the second is the day after my epidural! Is it possible that my body hated the epidural? It seems like a huge drop! My WBC is now...
  20. confusedks
    TIBC is strange. The range I have is not even close to the range you have. The hospital's range (when I was hosptalized) is 161-497. Serum Iron: 35-151 I don't know if Fe% is the same as % Saturation, but assuming it is...the range is 20-55 Ferritin range I have is...6-137
  21. confusedks
    Being soy free is not that hard. I find soy free WAY easier than dairy free for example. Soy lecithin is in everything. If you cut ALL soy out (including soy lecithin) for at least 2 weeks, you may find that you feel better. Also, are you dairy free? I think I am the only person who gets HORRIBLE diarrhea from dairy. Most people get constipated...not...
  22. confusedks
    I have no idea either Sherry. Sorry. I don't think CBC's show anything as far as Lyme...hence people going for so long undiagnosed.
  23. confusedks
    You're really close to me! I'm in West Hollywood a lot! I go at least a couple times a week! Do you have any favorite gluten free friendly restaurants? I know of some over there and some in the SF Valley.
  24. confusedks
    Sherry, I will post the reference ranges for the tests you posted if you're interested. Each lab is a little different also, so it's really up to a Dr who treats based on symptoms. My Dr doesn't, so things have to be VERY out of range. I was looking over some old test results and something was the lowest number it could be without being out of range, and...
  25. confusedks
    Carla, I don't know about the laser thing on LN. I don't really know what to think of it yet... I am skeptical. We'll see. I'm not going to be jumping on a plane to Germany any time soon. But if you do...I'll fly out to see you and use it!
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