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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted

Kassandra, GREAT NEWS!

I can't wait to hear about your LLMD appt.!

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Ridgewalker Contributor
Ridgewalker
Posted
Everyone,

So....are you ready for this......??????????????????????????????

I'M STARTING IV'S TOMORROW!!!!!!! :D:P:D:P:D:P:D:P:D:P

Yay!!!!!!!! What an incredible relief!!!

My mom has to pay for everything, but we're going to start tomorrow.

OH GOOD GOD!!! *faint* I know it probably doesn't feel like it right now, but you are one lucky girl!

(((Hugs!)))

confusedks Enthusiast
confusedks
Posted

Sarah,

Thank you! I know I am lucky...it's just hard to remember sometimes...lol. ;)

Carla,

I can't wait for my appt. either, and I keep forgetting we will get results from the Western Blot!! I can call you when I'm up there and tell you what the test says if you want, and you can report back to all the anxious Rachelville members...lol!

Kassandra

mftnchn Explorer
mftnchn
Posted
I'M STARTING IV'S TOMORROW!!!!!!! :D:P:D:P:D:P:D:P:D:P

I have been trying to find a place that you can get IV supplies from...such as saline and heparin. I have an rx, but nobody will fill it! I only have until tomorrow to get this stuff figured out, so I am hoping we will get it taken care of.

Kassandra

Hooray, hooray!!

How about trying a hospital pharmacy?

CarlaB Enthusiast
CarlaB
Posted
I can call you when I'm up there and tell you what the test says if you want, and you can report back to all the anxious Rachelville members...lol!

Kassandra

Oh, yes, please do!!! You could even text me the positive bands if you can't use your phone in the docs office, LOL!

mftnchn Explorer
mftnchn
Posted

Carla, fantastic news!!!!

mftnchn Explorer
mftnchn
Posted

Okay, this back problem is interesting. It definitely improves after ecoffee, then gets a lot worse in the middle of the night (peak time for detoxing).

So I wonder if the injury from the massage is the focus of something else?

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happygirl Collaborator
happygirl
Posted

I found my Christmas tree ornament from my parents, for last year....a little angel that said Miracles Happen.

This time last year I had no diagnosis, I hadn't started seeing my current doctor quite yet, and was very ill with very little "meat on my bones" (as this group knows)

Flash forward to Christmas this year....I have diagnose(s), but the better part is that I'm getting my life back. I worked my first full work week this fall....first full work week in well over a year. The meds that I started this fall have made the biggest difference in my life. I've danced wildly at weddings of close friends, I've started cooking again, I get to spend my weekends doing things that don't include sleeping the whole two days. I decorated the house this year for Christmas. I made a full Thanksgiving dinner. I went to a Broadway play and had a dinner out with my husband. I work hard at my job---and the better part is that I love my job. Not only for what I do, but for what they have done for me: given me a chance to do meaningful work, but with consideration of my illness.

My flares are fewer in quantity, shorter in duration, and far less painful. My veins work well enough to get 25 tubes of blood out in one stick. I don't cry at the end of each appointment anymore. My body doesn't hate me as much as it once did. I can eat everything except gluten and eggs....compared to my 8-10 foods last year!!! My good days are better than what I considered a good day 6 months ago. My bad days are nothing compared to my bad days. I look back and wonder at how I got through my bad days.....but I guess when you realize all your days were bad days, it becomes a new normal. My new normals are starting to resemble that of a somewhat "regular" person.

I still spend time counting out my pills for different times, for work and for home. I take naps. When I overdo it, I pay for it. I still go home from work early some days....and some days I don't make it in at all. I sometimes go to bed at 8pm and don't get up til 7am. I still live at the doctors and know how to fill insurance forms rather adeptly. I know BCBS's address by heart. My doctor's office is on speed-dial....and I use it.

The bottom line is that I am getting better. When many other doctors didn't know what to do, weren't interested in helping me, or both, my doctor and the nurses cared enough to work with me.

I didn't think that I would be where I am now, at this time last year. I think my ornament is right...Miracles DO happen, with the help of angel husband/parents/friends/doctors.

CarlaB Enthusiast
CarlaB
Posted

Laura, that's wonderful news. :)

Sherry, that sounds suspicious. :) I'm glad the coffee enemas are giving you some relief ... maybe you need to do them in the middle of the night!

mftnchn Explorer
mftnchn
Posted

Thanks so much for sharing that! Congratulations on your progress.

Can you remind me of what you are dealing with? Are you both celiac and a lymie?

confusedks Enthusiast
confusedks
Posted

Laura,

That is GREAT to hear! Hopefully I will be where all of you are in about a year! I think I need an ornament!!! LOL!! Also, I wanted to update you, we found out my insurance company DOES have a mail in prescription system. We will call and find out more about it...but thanks for that info! Never would have thought about it!

Carla,

I will text you or call you as soon as I know ANYTHING!!! It may even be when we are checking out...when my mom is paying, I'll be so excited I won't even be able to wait to get into the car to call you...lol!!! :D

Sherry,

We called all the local pharmacies attached to hospitals and they don't have the supplies. We did find a pharmacy that does this kind of stuff and they are very close (about 20 min. away). We will hear back from them tomorrow and we will go pick the stuff up.

Kassandra

mftnchn Explorer
mftnchn
Posted

Yeah, Carla. What worries me is that I have cut my abx to 4 days a week for 6 weeks now...due to the elevated liver enzymes. This just may not be enough. This back pain started last Thursday, wasn't bad until Friday, and my three days off abx are Sat, Sun, Mon. Today is flagyl and zithromycin, so I'll see what response I get.

I'm due to do liver enzymes, but I gotta be able to move enough to go do it. It's kind of a hassle. You have to do it fasting (no food or liquid) here, and must be there before 9 am. Rush hour traffic is horrible. We usually take a motorcycle but now it is freezing temperatures, and I am not sure I can manage to sit on the motorcycle either currently! Especially when I feel worse from midnight to noon or late morning after ecoffee.

If I do ecoffee in the night I won't sleep after. There must be a slight caffeine rise from it because I do notice that.

This is so frustrating because I can hardly do anything. I didn't mind a day or two of complete rest but now I am really chomping at the bit.

happygirl Collaborator
happygirl
Posted

I was dx'ed Celiac/gluten intolerant in 2004...unsure of which one I am.

AndreaB Contributor
AndreaB
Posted
I found my Christmas tree ornament from my parents, for last year....a little angel that said Miracles Happen.

I didn't think that I would be where I am now, at this time last year. I think my ornament is right...Miracles DO happen, with the help of angel husband/parents/friends/doctors.

Thanks so much for the update Laura. It will give many people hope with the progress you and Carla have made in battling the lyme this year.

I have to agree with your last statement too. :)

Yeah, Carla. What worries me is that I have cut my abx to 4 days a week for 6 weeks now...due to the elevated liver enzymes. This just may not be enough. This back pain started last Thursday, wasn't bad until Friday, and my three days off abx are Sat, Sun, Mon. Today is flagyl and zithromycin, so I'll see what response I get.

Have you talked to your doctor? Maybe you could up your abx for a few weeks anyway.

Laura,

Somehow I had thought you were biopsy diagnosed celiac.........was I imagining that?

mftnchn Explorer
mftnchn
Posted
My doctor refers to me as "complex."

Wow! Mind if I ask what labs you had the tests through? I had positives via Bowen in 2000. Wondering if I should ask my doc to pursue more testing when I get to the USA, and what. I was positive for borrelia, babesia, and ehrlichia. I think I have had it done twice, seems like second time only 2 of them were positive.

I struggled for a long time pre diagnosis, but had managed to cope after a peak of symptoms in the mid 80s except for the pain that worsened gradually over time.

mftnchn Explorer
mftnchn
Posted

Andrea, yes, I have the same thought but need to check the liver enzymes before I call the doctor. Meanwhile I need to get back on the garlic...I stopped during my last trip, just too busy for one more thing.

happygirl Collaborator
happygirl
Posted

No positive biopsy. My GI told me to go gluten free before my biopsy. I was on the diet for 4-5 weeks before my biopsy and was already feeling better. And he only took one biopsy. :)

Judyin Philly Enthusiast
Judyin Philly
Posted

Laura

I'm so thrilled for you.

Your post gives us all hope.

You fought the 'good fight' and your winning.

Judy

Tantwan Newbie
Tantwan
Posted

I've just been reading through this for the first time, but I wanted to comment on your TMJ/neck pain. I started having severe headaches last October and had to quit work and college due to TMJ/neck issues. I suffered for two months until I found an incredible physical therapist who has worked miracles for me. I wanted to tell you about him because he has done so much good for me. He works with a local dentist to provide an all around treatment program. He has really changed my life and left me with one less thing to worry about.

Hopefully you can find someone who can help as much as he has.

Tantwan

Provo, UT

melmak5 Contributor
melmak5
Posted

Jin - I am so glad you got to speak with your grandmother.

Carla - congrats on the good news!

Kassandra - I cannot wait to hear how things go with the LLMD!

(I am way behind on reading, but those were the biggies I wanted to get in)

I was doing better, then tried some food with rice and tapioca powder and ended up in the fetal position for almost two hours at a party. (It was gluten free, I made it from scratch - I was stupidly thinking it would be ok)

I feel like I am hitting a wall. Even when I only eat veggies and some meat (the safer of foods for me) I still am tired and in pain after eating. Plus all of my cold/flu-like symptoms are back.

I finished the 4 rounds of single-dose meds for a yeast infection, plus the 5 day course of topical antibiotics for the bacterial vaginitis and things still aren't "right."

I cannot get an appointment with my doctor, but the walk-in clinic said that if things didn't clear up I needed to see a gyn... but that requires a referral from my doctor.

I honestly am getting to the place of "SCREW IT" and just live with it because I honestly think no one has any idea what the hell is wrong.

CarlaB Enthusiast
CarlaB
Posted
I honestly am getting to the place of "SCREW IT" and just live with it because I honestly think no one has any idea what the hell is wrong.

Nope, you can't do that .... I was where you are now, fetal positiion/pain after eating included .... keep looking!

Look beyond the symptoms ... you want to know the root cause of all these problems.

Hang in there! We've all been where you are .... we kept looking, and are getting better. What you posted could have been posted by any of us a year ago.

rinne Apprentice
rinne
Posted

I can't keep up. :P

But wanted to say, Rachel that is wonderful, wonderful news. :)

melmak5 Contributor
melmak5
Posted

Thanks Carla, I just feel so frustrated and ready to say F-it.

I am thinking about just parking myself in the doctors office and refusing to leave until they come up with a reasonable game plan, but I don't think they are capable of that.

I think they are capable of nothing.

I am compliant, I am willing to do anything besides take Benefiber... GIVE ME SOMETHING TO DO TO GET BETTER

AndreaB Contributor
AndreaB
Posted
Nope, you can't do that .... I was where you are now, fetal positiion/pain after eating included .... keep looking!

Look beyond the symptoms ... you want to know the root cause of all these problems.

Hang in there! We've all been where you are .... we kept looking, and are getting better. What you posted could have been posted by any of us a year ago.

I have to say Ditto Kristina.

tom Contributor
tom
Posted
I honestly am getting to the place of "SCREW IT" and just live with it because I honestly think no one has any idea what the hell is wrong.

Kristina,

Most of us, if not every last one of us, have had this feeling.

Seems there were times for me when simply keeping some little bit of Hope alive was as difficult as dealing w/ the horrendous array of symptoms.

You will get through this Kristina.

Argh I can't remember right now whose sig has this quote, but it's entirely true.

I'm not saying it's going to be easy. I'm saying it's going to be worth it.

(Hope I got that right)

P.S. Big buncha great news lately! Good early progress for some. May it continue to complete wellness.

Carla/Chloe yay!

Laura - great to read that long post on your history.

Kassandra & Jin on their way to some answers yay!

(Grrrr forgetting other posts I thought I'd comment on. Jin's memory far eclipses mine)

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