dlp252

Do you get an surgery date this week?

They didn't say, but I suspect that I will by the end of the week. I left there around 3:30, so they probably didn't get an answer from the scheduling department even if they did call Friday. I figure they'll probably call tomorrow to schedule and I'll probably hear on Tuesday or Wednesday...but that's all MY guess, lol.

Well I slept better last night, lol. Actually napped on the couch too. I hardly ever sleep good after napping.

I've been having terrible ear pain when I swallow for the last two days. Yesterday I finally took Tylenol all day and that seems to have knocked it back a bit.

Donna, good luck with the surgery!

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I can't believe I go to Germany one week from today!! Woohoo! I don't know if you've been keeping up on LN .... the chatter about the Bionic is high ... it's the most read thread right now. I'm so excited since the lady who went over is now Lyme free.

Thanks! I haven't posted much about it, but I'm excited for your trip to Germany! I haven't been to LN in a long time so haven't seen the thread. Someone PM'd me over there, so I popped over to answer that, but didn't look at any threads.

Just to update everyone...my ferritin and iron is really low again, my hematologist called and told me I need Iron IV's this coming week (he wanted to do it last week, but I said no.) This is the one that 3 out of 4 patients go into anaphylactic shock. his nurse told me last year that 3 patients they gave it to almost didn't make it downstairs and next door to the ER because their reactions were so severe. She said they literally were giving them shots of epinepherine in the elevator so they'd make it to the ER.

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So, that's whats been going on! Fun stuff for sure!!!

Yeah, that's definitely scarey stuff!!!

Donna, sounds like further food restrictions will be quite an adjustment. Why can this cause diabetes? With fat and carb restriction it will be challenging.

They'll be rerouting the pancreatic and bile ducts and taking a chunk out of my duodenum. He MAY take out the gallbladder if he sees any evidence of stones, and if they have to do the more drastic surgery, he'll definitely be removing the gallbladder, and possibly parts of my pancreas and stomach, etc. Any one of those things can mess with the bile/enzyme/processing stuff.

Ok i woke up with major malabsorption going on. Now my stomacj is in major pain and my Bm is yellow. What can be causing this. I did google it and it shows things like bacteria and giardia. All i know is im in major pain. Im thinking it might be time to do an full stool panel.

I think a full stook panel sounds like a really good plan!

Just one main question, for most of you who have been diagnosed with Lyme does stress definitely make it flare up? We moved to Scotland just over a year ago. I was incredibly sick again the month before the move. The weird thing, I had new or changed symptoms, though also with some of the old ones. As we've settled into life and a routine here I've felt tons better. Still random symptoms here at there but not the daily drama like I was having.

Anyways, like many of you, I don't want this to be the answer and yet I do! So tired of it all....with no answers and little doctor support to find real reasons. Now the battle to actually get a doctor here to test me!

Welcome! Glad you found us. Definitely YES, stress can cause flares. My LLMD (lyme literate medical doctor) actually wanted me to quit my job (in a law office) because of the stress it can cause. Stress can cause all sorts of problems and make many things worse even without lyme. Lyme seems to make everything else worse.

The lab to use in America is Igenix (link is on one of the first few pages of the thread I believe), but I haven't checked in a while about international patients. I think the blood needs to get to Igenix within a couple of days. Ack, my computer is so slow or I'd go check for you, lol.

I think I won't have a definite date until next week sometime. The nurse has to schedule it with the hospital, and it's a two-surgeon surgery, so I imagine there will be scheduling concerns trying to get both on the same day at the same time. I saw her late yesterday, so she may have called or may wait until Monday to call them.

I think the diet restrictions won't be much of an issue...I probably won't be able to eat anything for several days. I've had 3 of my endoscopies there and they were VERY good about documenting allergies and intolerances...I got a nice bright RED bracelet listing everything. When I can eat, I'll make sure I don't eat anything that might be gluten or casein laden, but I probably won't worry much about the other stuff. I'll have to be able to eat before they let me out, lol. I will most likely be more restricted after surgery. It could cause diabetes and it could cause problems digesting fats...I won't know until after. My mom is more worried about that part of it than anything else, lol. She already gets nervous thinking about what I can eat...the thought of more restrictions really has her upset.

Yeah, awful hour...I couldn't sleep last night at all so finally just got up at 3 a.m. I hate insomnia, lol!

I'll email you Andrea.

Mslee,

Welcome! About the chemicals thing...I just try to stay away from as many as possible. I definitely have a problem with perfumes, colognes, household cleaners, etc, but I also try to make sure I stay away from food that may have them.

April,

Interesting about the water. On a work day I drink between 6-8 glasses, and I'm wondering if I need more than that. Weekends is usually much less because I'm out and about and water isn't handy and I forget, lol. My neck has been much worse lately.

Rachel,

Pink = You' DIE if you saw what I've bought lately. BRIGHT, FUZZY pink slippers in several styles...a BRIGHT pink shawl thingy to take to the hospital, and some bright pink pajama bottoms, lol.

Everyone,

So, I saw the surgeon again yesterday. My bloodwork and EKG were great and he was very pleased with them. My CT scan showed a spot on my liver. He can't say for sure what it is or isn't, but while he's in there doing his thing, he'll get a biopsy of it. That will save me having to get a needle biopsy, which doesn't sound fun. Still no date on the surgery, and not a lot more info than I had before...this time he said I'd be in for upwards of a week.

Kassandra, glad to hear you are doing better!!

I'm not looking forward to starving, that's for sure. I think that might just be the worst part. I hope!

Well I know it's not one of MY favorites, lol!

Hope all goes well on Friday...you'll be well prepared, so that's going to help!

Great minds think alike! Here is a thread I started a few years ago:

Open Original Shared Link

I've seen more improvements as well: dizzyness is gone, sinus issues are gone, itching is gone...I don't know how much is due to gluten/casein or the other things I've been doing, but it's improvement and I'm happy about it, lol.

Makes me really glad I refinance my condo a few months ago. I was able to pay off all my credit cards plus get some money saved. I've slowed down slightly in my spending, but that was mostly due other circumstances with my health.

I'll probably do a little stocking, but I have a small condo, and there just isn't room for much more stuff.

Good to hear from you Kassandra!!!

I've noticed that surgery tends to set off more "nerve" type pain in me...not sure whether it's the sedation or the actual surgery that does it, but my whole foot is "nerve pain" central right now. Just to touch it slightly sets off a burning type sensation like a horrible sunburn.

After my hysterectomy, when I first came out of the anesthesia in the recovery room, they couldn't give me enough pain meds. I think I got 3 shots within 10 minutes or so, lol. Fortunately that was the worst of it, once that kicked in it pretty well stuck and the normal morphine pump and the oral stuff seemed to keep it manageable but that was almost 8 years ago.

After all of my recent "procedures" I've noticed an increase in that nerve stuff.

After my foot surgery, the double strength Vicodine did nothing!

Makes me a bit nervous about my upcoming surgery...

I agree with the suggestions so far. After my hysterectomy, I also had applesauce, scrambled eggs, really soft veggies, pudding cups, jello cups. I wasn't gluten/casein intolerant back then (or at least I wasn't aware of it).

After my bladder surgery I bought some of those Thai Garden soup bowls (they have several that are gluten free), but I can't seem to find any of those anymore. Those were REALLY good, but homemade chicken soup would be just fine. I've even tried making mine with rice noodles (like the oriental kind) which didn't turn out bad.

I'm going to be having major surgery soon myself where they'll be rerouting bile/pancreatic ducts and removing a part of my small colon and possibly doing a rigging of my stomach to a different part of my intestines! My doctor advised eating small amounts of easily digested soft foods for a while...so I'll be eating soft easily digested things right along with ya, lol.

Yeah, you (Rachel, lol) probably need more than what you are drinking. I think (don't have any studies) that the body uses what it needs for tissue, cells, colon, etc. I don't necessarily pee any more when I drink more, but I do sometimes, so I don't know exactly why it's different those times. I probably go every 3 hours or so, unless I'm really COLD. :lol: Then, better leave me a path to the restroom.

Donna, hope all the preparations for surgery are going okay for you. I have problems remembering to drink water too, I rarely feel thirsty.

Yes, surgery prep is going well...I just bought some PINK fuzzy slippers yesterday...I've ordered a shawl type thingy because I'll have tubes and things coming out of and attached to everywhere...I think I'm done with all the labs and testing...now we just need to set a date, lol.

I'm good about water when I'm at work, it's when I'm home or running around that I have the problems. :rolleyes"

Let us know how u like the foot pads, once you use them, I for one will never use them again lol

Yes, I plan to go very slowly...just one pad per night and then every other night.

Oh, I forgot to tell you all that I bought detox footpads yesterday. Bed Bath & Beyond had them so I picked up a box. I was too afraid to try them last night though, lol. The box says to put one on one foot one night, then one on the other foot the next night, or you can put one on each foot, but every other night. I think I might try one foot one night and then skip a night and then do the other foot, lol.

Ummmm.....it seemed like a positive thing to me.

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So yeah....I think the new place is probably much better as far as alot of things...including parking. It was heinous trying to make it on time for my appt. when I couldnt park ANYWHERE. I think I was almost in tears once because of that.

Yeah, a very positive thing, lol.

And yeah, the parking could be a heiniosity for sure. I guess one of these days I'll have ot call to see where they went. I'm surprised they didn't send out an announcement or at least put it on their website (or, I guess I should go look again to make sure, lol).

I'm going to look for the Solaray Tumeric too.

Mine always happen in my calf. I haven't had them in a LONG time. The wierd thing was I couldn't stretch it out because then the front muscles started cramping. Feeling like I was going to pass out if I kept standing wasn't helpful at all!

Yeah, this was how it was for me too...nothing helped at the time it was happening. There was no pattern to how or when I got them...they weren't clustered together or anything...just maybe once a year I get one.

This is something that probably has an affect on how I feel each day. I bet if I kept track....I would notice that the more water I drink....the better I feel.

Do you think this could contribute to cramps?? I dont get them now....but before I got sick (and when I was getting the charlie horses) I did not drink ANY water....EVER.

Yes, I think it can contribute. I also feel MUCH worse if I don't drink water. It's funny because some days I just am busy and don't think about water...then some time later in the day I'll actually start feeling sick, and I'll realize that I haven't had water.

After my CT scan on Wednesday, they wanted me to drink a LOT of water because it helps flush everything out.

Yeah....thats how I feel too....afraid.

I havent been to Anna's new clinic...I'm not even sure where she's at exactly. Dr. P. said I could get it at Whole Foods....but I didnt see it there. Which brand is it? If its got less "ingredients" than the one Dr. P. recommended....I'd rather try that one. The less "stuff" the better. I just want the curcumin.

Btw.....so far I really like Dr. P. He seems to be more proactive with the tests, getting answers and getting me on the right treatment program. I dont feel like he's sending me to the new voodoo lady so that she can "take over"....but rather so that she can give him more insight as far as how he's gonna treat me. So far so good....the cost (as far as appt.'s) has been exactly the same as Dr. S.

We'll see what happens in the next few months.

If he can get me better....I'll recommend him to EVERYONE.

Your mom!!!

Good to hear about Dr. P...I'm still thinking about going to see him, but I'm just waiting until after this next surgery before starting anything new or seeing anyone new. That'll give me at least a few months for you to tell how MUCH you really like him, lol.

I haven't been to Anna's new place either. Their website (at least a few weeks ago) still had the mall address, unless they just moved somewhere else in the mall. I wouldn't mind being tested for a few more things...the precancer thing, and I had the cancer miasm...

Okay, the curcumin...

It's liquid and the ingredients are: Curcuma, Bupleurum, distilled water and grain alcohol. The alcohol scares me...I contacted them to make sure it wasn't wheat/gluten, and they said no it wasn't. And, what's up with that bupleurum....looks like a bad accident between burp, bubblegum and rum.

Anyway, the blurb on the bottle says: This product contains Chinese herbs traditionally used to stimulate energy circulation, relieve congestion, and resolve bruises and clots.

Rachel, I think Anna has Curcumin. I bought some from her several months ago, but have never tried it. She really wanted me to take it, but I'm afraid, lol.

Glad to hear Kassandra is doing well and no further surgery is needed! Pain meds don't work well on me either, so I'll be praying for her.

I've had that leg cramp thing happen too...hasn't happened in a long time though...I'll have to remember the soap thing, lol.

I'm being run all over town and getting a makeover.......my friend mentioned bringing flip flops so I don't ruin my toes though, Also going to dinner at a place that says they can handle gluten free.

OMGosh, I am sooooooo happy you are doing this!!!! This sounds like a great fun relaxing day for you (will pray for Mitch, but you aren't allowed to think about them!!!)! And, yes...NO CONSERVATIVE COLORS!!!! Right now I've got on bright royal purple polish with silver glitter stars, lol.

I am feeling horrible. I feel like I have the flu. I've been reading a lot about Lyme and mold toxins and learned that they cause cytokines, as we have talked about before. I think that's part of the reason I have felt better on abx as I believe abx have anti-inflammatory properties.

Gosh Carla, I hope this all clears up soon...you've kind of been suffering for a while now.

I'm taking the EM makeup with me.....thanks Donna.

You're welcome!

Wow Paula, welcome...I promise NOT to give you a bad time, lol!

Now to teach myself how to prepare dry beans and my family to eat them!

I am definitely a NONcook, lol, and I've actually done beans and split peas...so it CAN be learned, lol!

Potatoes, rice, fruits, veggies and meat.

She'll probably be "out of it" for a while today.

Welcome Mysty

My neck and back have been so messed up! The massage last Friday made it worse I think. I don't know whats going on! And I feel like I am getting some of my other wierd symptoms too. I am wondering if its adrenal related.

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I am wondering if mold is around me somewhere causing this.

I think mold is a huge factor for my neck issues.

I will email or text Carla so she can update you guys as soon as I'm able.

Yes, we'll be thinking about you and worrying. I'll be praying. I like your team of doctors!

Anyway, busy day, can you tell I'm feeling better? LOL I haven't had to take pain pills either.

Yay, great news!

Sounds reasonable enough to me.

Oooh massage sounds good...I'm getting one tomorrow!

Re the article, I wonder if that's why my doctor wouldn't give cholestyramine to me.

Aw Kassandra...I'm so sorry about the GB!!!!