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Nyxie63

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About Nyxie63

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    Female
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    Pennsylvania

  1. Hey Nyxie! Glad to see you are still alive and cranky! :P Was wondering where you were!

    Took a break for awhile. Decided to give others the benefit of my rant/whine sessions. :D

    Spent the last week selling at a flea market. Don't know how I did it, but I did it. :P

    Hope that's not something serious.

    Thanks. I'm having funky premature heartbeats. Funny thing is they're regular - every third one. While PACs usually aren't anything to worry about in a healthy person, I'm not sure what it means for a lymie.

    Wow, so soon!?

    We're on about the same abx .... except I'm on Cedax and Mepron.

    I've been thinking about you the past few days and wondering what happened to you. :) When's your next appt? I go up there July 14.

    Yeah. L said she's concerned about my brain stuff. That, and they found lesions on my MRI. There's also the issue of insurance. Apparently, they tend to be more willing to pay for IV abx when they're rx'd closer to the original dx date.

    My next appt is with L on June 19th. Then I have one with Dr H on July 23rd.

    Nyxie,

    What IV med are you starting on? Are you getting a PICC or a port? I'm sorry you have to start on IV, but I'm really hopeful that it will help you! :)

    L wants to start me on IV Rocephin. Looking at a PICC line right now. Trying to figure out how I'm going to manage the 2-week camping trip with that thing in me. :huh:

    Thanks! Hope they help you too! :)


  2. Kass,

    Looks like we're going to be joining the IV abx club together. Saw L at my Dr H's office yesterday and she wants me to start on them asap. Fun!

    Maybe we can come up with a password and a funny handshake or somesuch. :D

    -------------

    In other news, finished the flea market. I felt better than I thought, but was still in pain and tired all the time. But I did it and that's the important thing.

    L also wants me to get a holter monitor because of some arrythmia (sp?) she noticed during yesterday's appt. Finally, it happened when someone was there to listen! Pick up the monitor tomorrow.

    Massive abx changes. She's starting me back on the Malarone, adding Probenecid, and changed the Cedax to Ceftin. Still on Zith and Plaquenil. This should be interesting.

    That's all for now. Just wanted to update folks and let you know I'm still alive, kicking, and cranky. ;)


  3. Miamia,

    Congrats on re-entering the dairy and gluteny worlds! :D

    Katy,

    You might want to look at an RBC elements blood test. It tests the mineral content of what's in your red blood cells, rather than what's circulating in serum. It can give a better idea of what's in your tissues. The main problem with hair analysis is that it only shows what you're excreting. If your body is holding onto certain things, they won't show. If you do the hair analysis and if you color your hair, pubic hair will work.

    Paula,

    Sorry about your mold problem. Maybe a dehumidifer would help? At least it would draw moisture out of the air so the mold will dry out and, hopefully, die. I'm sure there's probably a mold problem from the flooded rental property next door too. If not now, there will be. Could be where the new surge of mold is coming from.

    How much tea tree oil did you put in the bath?

    Carla,

    The only problem with green tea (other than caffeine) is that it contains high amounts of fluoride. Since you have thyroid issues, it might not be the best choice. What exactly is it in green tea that promotes abx utilization anyway? Maybe they have it in capsules?

    Sorry I didn't address everyone. Short attention span still kicking in. Hope all are well. :)


  4. Hey! Just stopping by to let you know I'm still kicking. Been immersed in the world of brain stuff lately, trying to educate myself.

    Got my MRI results back. No typical lyme lesions, but they did find something. Unfortunately, they couldn't really tell what it was. It's either a gliosis (brain scar tissue) or a sign of early vascular disease in the brain. Both can be caused by a lot of different things (B12 deficiency, migraines, autoimmune stuff, etc).

    I'm going to be sending the films out for a second opinion, particularly since I'm noticing things on there that they didn't mention. Yeah, I'm totally untrained and have no idea about brain structures and all that. But when this thing looks a lot like the thing they mentioned but they didn't mention the first thing, I get curious. After that, will be looking for a good neurologist. Will probably end up having to go to NYC. Ugh.

    Anyway, I'm doing fine on zith and ceftin. No side effects to speak of. Yay! Feeling a little better overall. Not fabulous, but I'll take it.


  5. 9:30 at NIGHT!? :o:lol: Wow! Holy heck...I'd be asleep by then. :P

    LOL! 9:30 is actually ok for me. I usually don't crash until around 11. It's the afternoon appts that get me because I'm apparently needing 3 hours naps these days. Ugh!

    Grrr. I'd be ticked ....

    How's the new med going?

    Adam bought be a pretty wide brimmed hat in honor of starting the doxy. :P

    I'm just slightly miffed because I want to see the results... now! :D

    The zith is going great! No side effects so far. *knock wood* My stomach's even behaving! Woah!

    The stone massage sounds wonderful! Wild about the temp differences.

    For summer-wight gloves, maybe check bridal salons. They usually have a decent selection in different colors and styles for bridesmaids.

    Wait...what kind of MRI were you doing? Was it an open one?

    Yeah, it was an open MRI. They're not as sensitive as the regular ones for brain stuff. Less definition/detail and all that.

    I'm feeling a bit more relaxed about the one on Wed nite tho. They did run a couple of passes and I won't worry anymore about anything flying out of my body or my head exploding. :lol: :lol:


  6. Hrm.

    So I get there, get in the machine *bump bump click click click*, and tech comes in. The tech, btw, was extremely cute although not a whole lot of personality. But anyway.....

    He said he called the radiologist while I was in there (heckuva time to call). The radiologist said that in order to get a better look at what's going on in my head, they'd need me to go in the regular MRI. Apparently, white matter lesions from lyme don't just jump out at you.

    I'm now rescheduled for 9:30 at night this Wednesday.

    At least all the paperwork's done. :lol:


  7. Another drive-by. Must be a trend tonight. :lol:

    I'm doing much better these days. The migraines and vomiting episodes have gone away since I stopped taking the Mino.

    I'm on day 2 of Zith and no side effects so far. *knock wood* Other than knots in my right shoulder and neck that won't go away, I'm actually feeling pretty good. Even the tingling has died down to almost nothing. Yay!

    Supposed to start Ceftin either tomorrow or Tuesday. Hope that goes as well as the Zith.

    Getting a brain MRI tomorrow to check for swelling and other fun stuff. A friend of mine has offered to get in touch with a few neuroradiologists she knows (who are lyme literate) for 2nd and 3rd opinions. For free! It's good to know people who know people. :D

    Will update again once I get my results.

    Hope everyone's doing well (haven't caught up yet). :)


  8. Wow, she changed everything around! What about the Malarone? Maybe you just need to beat down the Lyme a little before you can handle treating coinfections .... the Levaquin in the beginning may have even been too much for me.

    She's taking me off the Malarone too.

    "Musical Meds" anyone?

    This is wild tho. Never thought I'd have so many problems with medications. It ain't right, I tells ya!


  9. Must mean your symptoms are normal herxing symptoms. :D I tell you, I am even getting nauseous on the Levaquin. Did you take your meds today? How's your tummy doing now?

    I'm pulling out of this herx ... not out of it yet, but got a lot done today, so that shows improvement.

    L just called. She wants me off everthing but the plaquenil and nystatin. She doesn't like the reactions I'm having to the meds. Switching my meds over to ceftin and zith. I'm supposed to skip today and tomorrow and start the new meds on Saturday.

    Stomach's still oogy and head's a tad achy, but otherwise sort of ok.

    Glad to hear the herx is passing. :)


  10. What, did you think if you posted that low enough that I'd miss it? See what I mean, guys?

    So, have you heard from Dr. H yet?

    Nyxie, semi-professional smartazz. At your service. ;)

    Not Dr H. Got a fax from the office finally giving me the pre-cert number for the MRI (only took over a week). *grumblemutter* They did, however, write it on the page I faxed to them yesterday with a list of my recent symptoms. Guess that's my answer. :ph34r:

    It's scheduled for this coming Monday. Guess I lucked out - they had an opening in the open MRI unit that afternoon. Yay! Saves me the trouble of having claustrophobia anxiety until then. Can use that energy to be anxious about other things. :blink:


  11. Bully4You,

    I try to limit soy (mostly because of the impact it has on the thyroid), but with my reactions to most meats (even chicken if I eat it too often) I'm try to vary my protein intake. And I'm not a huge fan of fish. I'm currently doing a rotation diet, which means I can only eat a food every 4 days. Some foods even less so (max 1x a week) depending on my reaction.

    I do have hormonal imbalances. Then again, i'm also at "that age" where things start getting funky. My endocrine system is seriously out of whack, most likely due to Lyme&Co.

    Spunky and Turtle,

    Thanks for your replies! Will have to try the bean burgers out.

    Thanks again to everyone who's posted here. :)


  12. Thank you for the replies! :)

    Will have to try the tofu/freezer thing. Hubby won't touch tofu (it's evil, he says) and I have to find some way of sliding it past him.

    Fortunately, he's more open to the idea of veggie burgers and the like. Looking for fast and easy for days I'm really not feeling up to cooking (let alone getting out of bed) and the Sunshine burgers sound like an option.

    Will also look for veggie burger recipes. Wonder how well they freeze?

    Thanks again :)


  13. I'm with rachel anything i don't react to I am eating- but since i react to so many things I guess thats why i ahve to throw alot of rules out the window.

    Am I the only one here who suffers from lack of appetite?

    Nope. I tend to fluctuate between bouts of extreme hunger and not wanting anything but liquids. Right now, I'm hungry but don't want to eat anything. It'll probably be a smoothie and "fudge" day (starting malarone today).

    I'm reacting to a lot of things, even those not on my list. Can tell because of almost instant post nasal drip after eating. Probably isn't helping my appetite any.

    I've noticed on days when I think I'm eating a lot, I'm not really. Just seems like a lot in comparison to other days. No wonder I'm still losing weight.


  14. Well! Wasn't that interesting? Hmmmm.....

    Managed to find someone to go with me to help with the driving. More on that later.

    Got all my test results back. Still trying to figure out what to make of them. Been googling various tests to find out what exactly they mean.

    Apparently I'm not producing many antibodies. Even to things I should be. The doc thinks that I either have one heckuva immune system that zaps everything before my body has the chance to produce antibodies, or my immune system is tanked and I can't produce antibodies.

    I did have reactions on a couple of tests.

    Igenex WB: IgM - 18+, 41+, 83-93+. IgG 41+. That's it, just weak positives. The WB I got through MDL was stronger. Not more positive, but more bands showed up. Oh, well.

    EBV IgG 1.45H (0.0-0.9) So I have that, but a low infection.

    HHV-6 titre: IgG 1:40H (1:10). Shows a past infection.

    All other bacterial and/or viral testing was negative.

    Other test results:

    Immunoglobulins (G, A, M)

    IgG 750 (694-1618)

    IgA 84 (81-463)

    IgM 172 (48-271)

    CK, Total 78 (<=165)

    ESR, Westergren 3 (0-20)

    Cardio CRP - 7.8 (3.1-10.0 High cardiovascular risk)

    IgG Subclass 1 - 297L (382-929)

    IgG Subclass 2 - 454 (241-700)

    IgG Subclass 3 - 57 (22-178)

    IgG Subclass 4 - 9.6 (4.0-86)

    Rheumatoid Factor <7 (<14)

    EBV Capsid EB (IgG, M) - .36 (0.0-.90)

    MMH 143 ( 87-318)

    Homocysteine 7.7 (5.4-11.9)

    ANA - negative

    It looks like a lot of things are on the low end of normal. I'm trying to find out what the optimal ranges are for them, if there are optimal ranges. Any insight you folks could offer would be most welcome.

    So anyway, after all that, they've decided to treat me as if I have babs and bart anyway, in spite of negative testing. I start Levaquin and Malarone today. They also switched my doryx to mino because it's easier on the tummy and warmer weather is coming so (hopefully) I'll be outdoors a bit more.

    Forgot to ask some of the questions I'd written down, so I'll be faxing those over today.

    Doc didn't think there would be a problem with my pork allergy and taking my thyroid med, so unless I start really reacting to it, I'm going to continue taking it.

    Oh yeah. And they want me to get an MRI. I mentioned that the olfactory hallucinations were back, along with pain/pressure on the top of my head. Want to make sure I don't have any swelling going on in there.

    Got a script for monthly bloodwork. Have to figure out where to get it done now.

    Ok, back to the driving "help". Still trying to figure out if it was worth it or not. I ended up driving to the doc's office (nearly 4 hours). Was exhausted after the appt (heck! I was exhausted half way through the drive), so my helper drove... for about 2 hours. Then he couldn't keep his eyes open anymore and I ended up driving the rest of the way home. Grrrrr! Add in a high annoyance factor and it makes me wonder if I'd have been better off going by myself.

    This morning, I'm still exhausted and in pain. More than usual.

    Going to switch over to mino today. Will be adding in one of the new meds every three days to see if I have an adverse reaction to them. Next will be the malarone and, finally, the Levaquin.

    The doc said if I have a positive reaction to the Malarone/Levaquin, she'll be switching me to Mepron. Oh goodie! Yellow tempra paint. :P:blink:

    I've already been warned about the possible herx (thanks Carla!). Not looking forward to going through that, but it's the only way I'm going to get better.

    Edit: Oh yeah! Forgot to mention. I actually had a fever yesterday afternoon! It was 98.9! Don't think it's been that high in years!


  15. Hey Gang!

    Haven't been around in awhile. Just wanted to let you know I have an appt with Lauren/Dr H tomorrow. Will post when I get back.

    Found out that hubby has training tomorrow instead of a day off, so I'm going by myself. Sucks, but there's nobody to go with me. Well, there's one person who "could", but they have a very high annoyance factor. Don't know if it's worth asking them or not. Constant irritation vs. help with driving. I don't want to spend the night in a hotel room (we can't really spare the money right now), so the annoyance factor might be worth it. *sigh*


  16. That's what I'd do. I think he's perfectly capable of handling it all. I'd ask him about the Vit C IV and the allergy shots next time you talk.

    Can you talk all this over with your LLMD and see what his perpective is, i.e. the allergy shots and C IVs, and anything else you have concerns about that need to be addressed?

    I don't feel comfortable calling, but I see the LLMD in 2 weeks. I'm making a list of questions to take with me (it gets longer by the day). Thinking of faxing them to L ahead of time so as not to take up valuable appt time with the asking. Carla, have you done this? Think it'd be ok?

    I do tend to feel better when I have fermented foods (miso, vinegar), but don't know if it's because it's restoring good bacteria or stopping the die-off of the bad stuff. Still trying to figure all this out.

    Guess I'm really anxious and frustrated at this point.


  17. Just got back from seeing the holistic MD. I'm sooooooo not happy. That's two docs in a week who've let me down. I'm thinking of just chucking the whole thing and letting the lyme doc handle everything.

    She never even mentioned the blood tests I'd had done. And I'm pretty sure her panties are in a twist because I went to see a lyme specialist. Strange. Before today, she never even mentiond she treated lyme. This time, she talked about "all the patients she has with lyme and so many are doing so much better". Harrumph!

    If she gave a rat's be-hind, she'd have brought that up when I first mentioned it two visits ago. Or gotten a clue from my symptoms list (if she'd ever bother looking at it).

    She's trying to talk me into doing IV vit C treatments. I haven't read much about this and will run it by the lyme doc.

    In addition, she said the candida diet consists of not eating wheat or cane sugar. That's not what I'd read or heard from other sources. I don't really know what to think about that. It doesn't make sense to me. Why would other carbs be any less likely to cause candida to grow? And she said vinegar is ok to have. ??????

    Her theory about my food allergies is that I feel bad because I've always been allergic to these foods which have always been part of my diet, rather than because of the lyme or candida I've developed leaky gut and thus developed all these allergies relatively recently. (run-on sentences are fun)

    I'm supposed to start allergy shots now. Every week for 3 months and then they'll show me how to do them myself. Not happy about this either. They say it'll only take 20 minutes, but that doesn't count the hour+ driving time each way, so it'll take half a day each time.

    Just shoot me.


  18. Lisa,

    Wow! That's great you feel good enough to work again! Let us know how your appt goes.

    Carla,

    Ugh and Yay! At least now you know. Hope the kidlet feels better soon.

    RPM,

    Sorry. I don't know much about hyperT. Do you have your latest thyroid test results? Would you mind posting them here? Maybe I (or someone else) can see something in them.

    In other news,

    I finally figured out what part of my problem is (besides the obvious). :P I have food anxiety. Not a big stretch, considering what I have to work with. Just takes me a little longer to arrive at these things.