Topic: Having a really rough time, thought things were looking up
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Over the past week or so I've thought about posting something like this at least once everyday but for one reason or another I didn't. But right now I'm in such a tailspin and feel so overwhelmed and awful and just need some support and whatever else anyone has to offer.
I thought things were looking up. After such a long time of going downhill, not being able to find a treatment that would work, I was finally responding to IV Primaxin that I started at the end of October. It was very slow progress but that wasn't discouraging, I was elated just to be seeing some improvement, any improvement. I mainly seemed to be having a little more energy, my nausea seemed to be getting a little bit better (some days better than others), and my voice (which was often very weak and I was constantly clearing my throat) was stronger - something I didn't notice that much but some friends I hadn't seen for a while pointed out to me.
But on December 23rd I had a sleep study done and it's all been one big tailspin since then. I had been pushing myself before that but it wasn't that bad. I expected a crash over the holidays but nothing like what I'm going through right now. The night of the sleep study was awful - I got maybe two hours of sleep (I haven't gotten the full report yet) and it has caused the whole crash to intensify exponentially. I have essentially been in bed since getting home from the sleep study on the morning of Christmas Eve. with the exception of outings to doctor's appointments and the few other things I've ventured out to do. This is a big setback from what I had been able to do for the month before this crash.
On top of all this is a major GI concern. I've had GI problems (mainly nausea and difficulty eating) on and off for a long time, most noticibly since the fall of 2004 after what was suspected to be complications from Rocephin, although the tests were all inconclusive (I lost my GB in 2002, for those who don't know, but had a GB attack in 2004 while on Rocephin again and my GI dr. at the time suspected it was Rocephin sludging in my bile duct but no test was done to confirm that). I have nausea, almost complete loss of appetite, and abdominal pain when I do eat. It's really frustrating. Right now my food intake is limited to liquids and some "easy" solids (crackers, pretzels, occasionally a piece of bread or roll). And now I'm slowly having trouble tolerating the meal replacement drinks and protein powders.
I do think at least part of the lack of appetite is from increasing the dose of Topamax I'm on for Lyme migraines, but it's helping the migraines so I really don't want to go off it if I can help it. The eating has only been really bad for the last two weeks or so but it's getting worrisome. I see my LLMD on the 26th but could go to the walk-in clinic before then if I need to. I have a slight suspicion that I may have gastroparesis but I'm really not sure. It's all just so frustrating, especially 'cause I thought I was doing better.
I hate to go back to my LLMD on the 26th and have to tell him I'm doing so badly! BUT, even with all this crash and everything, I do feel like the Primaxin is still helping me because other symptoms are still getting better - mainly my voice is still getting stronger (who'd have thought that would be the symptom I would notice?) and my joint pain is better.
Sorry this ended up being so long. Thanks for listening. This is all just so frustrating. I'm at the point now where I need to go out to get my younger sister a birthday present (her 16th birthday is on Saturday) and I need my mom to take me to the mall and push me in a wheelchair because I'm just too tired and weak right now. Thanks for the support!
Peace and Healing are being sent your way..Hang in there you will improve again..this down or lag is only temporary don't forget that...
We are here for you and understand completely..Please keep reseaerching your situation. I find that helps me when I'm having a bad couple of days or weeks. I reasearch to find out why the difference and even the slightest change can be the cause..
Hang in there we are routing for you honey!
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
You have been in this for far to long.
It is just not fair.
I like reading your posts so much and you really seem like such a gentle soul!
I have enjoyed looking at your journal and it has brought me great comfort seeing another woman who is brave and strong and loved the outdoors get this disease and have to battle as hard (even harder sometimes) as me.
I guess I never shared that with you. I bet there are TONS of others who have looked at your site and who have been moved and comforted but who never voiced this.
Not to mention what energy it takes to do something like that site. Dang, I just sit around and hope someday I'll learn how to do that.
I am hoping you can really hear that you have made a difference in how I see myself and this disease. stay strong, Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Hey Annie.Im on my twelvth week of IV and the last ten days have been crummy and it gets discouraging but I know it comes and goes.Hang in there and keep comming up with ideas to help other lymies,you are encouraging.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
Oh Annie, This truly stinks....I would like to say sux, o.k. I will say it.....THIS SUCKS !!!!
Unfortunately I'm clueless. The GI problems have been off and on while on orals and i.v.???
You would think the primaxin would be helping the g.i. stuff....are you on ANY ORALS???
Can you call the doc ahead of time and ask for other suggestions before the 26th????......Can we add something to the i.v. like Pepcid???????
Keep us posted we all care about you!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Loribelle
Frequent Contributor (1K+ posts)
Member # 6293
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Thanks for the support. It helps to know you're all here for me.
First off, let me let you all know that I'm already on Zofran and Zantac for my ongoing stomach/GI problems.
Daniella, thanks for the support and understanding. It really does help to know people are here for me.
trails, thank you so much for your kind words. It's nice to know I have made a difference through my journey and struggles - that makes the struggles themselves seem a little less bad. I think someday I might like to write a book about all this.
Joe, sorry you're having a rough week but it is good for me to remember that there are ups and downs. It's just frustrating - I wouldn't expect a down for me to last this long!
Gail, these GI problems have mostly arisen since the fall of 2004 and since then they've happened more so when on orals but when on IVs, too. The Primaxin was helping with the nausea and it seemed like it was getting a lot better but now it's a lot worse so it's quite baffling to me. I'm on IV Primaxin and also oral Tinidazole (500mg twice a day). The tini is a little rough on my stomach but I've worked up to this dose and I'm able to handle it now along with my other various oral meds. Calling my LLMD's office doesn't usually result in much headway but there's a very good walk-in clinic I could go to (I'm very seriously considering switching to have them be my PCP - they also take appointments). They're the ones that dealt with these problems in the fall 2004 when it was really bad.
Loribelle, I'm certainly resting quite a bit and will continue to do so.
It looks like the outing to the mall with my mom on Friday is a go so that will be nice at least. And hopefully it will raise my spirits a bit to get out of the house, wheelchair or no wheelchair. (It's pretty much a given that I'll need the wheelchair but I'll do what I need to do.)
Thanks again everyone! I'll let you all know how I'm doing later and if anything changes. The more I read, the more I really think it's Gastroparesis causing the GI problems but I can't know for sure. For a long time I've had issues with not being able to eat very much and then feeling really nauseous afterwards. I just wish there was a way we could figure these things out for ourselves!
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Aw, Annie, I thought you might be in trouble just by the description of the zillion things on your bed! So sorry to hear.
Hope you will enjoy your time shopping -- pick a nice place without too much noise/lights/crowds -- you know how us Lymies can get! The fresh air will help the sensitivities, and the fun will be worth the nap you'll probably need after.
When you write that book, you'll have to include all the wonderful people you have helped with your Lyme retreats. Including me! You saw me only a couple of days after finishing the Mepron/Zith that whacked the little bugs back into remission.
And Jon -- you'd hardly recognize him, he's growing and is even getting a bit of a mustache! The retreat really affected him deeply, meeting people of all different ages who were as sick or sicker than he was, all learning to cope and make life meaningful.
Girl, you helped us tremendously -- the retreat was one of the best things to happen to me that whole year. Rest assured that you make a profound difference in many lives. We love you and appreciate you!
Now get some rest!
Love to you and your mom, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Im sorry to hear you are having such a rough time of it!
I saw my GI dr yesterday. He did tell me that he attended a conference that talked about Lyme and GI problems causing gastropaesis (sp?) and how very common it really is in Lyme! He said that the erythomyacin family of antibiotics seem to help the most with this and can allow food to pass more easily through the stomach and intestines.
I hope you get to feeling better soon! I hate this disease just as much as the next person. God Bless.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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I want you to know that you truly inspire me being a young person with this disease and handling it with the grace that you do. You will be better and have a great life!
I have learned a lot from your website so thank you for all the time you have put into it.
I'm sending lots of love and healing! Posts: 460 | From Illinois | Registered: Aug 2005
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posted
Annie, You are the first person I talked to when I joined this group, and you gave me just what I needed - hope. Let me give some back to you - you WILL get through this. You are a very special young woman. Pursue the advice on your gastro. thread. Prayers are going up for you.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
annie,
you will get through this and feel better.
your sense of humor - winnie the port - will help you
sending prayers
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hey,
Well I'm glad you let us know what is up.
I am so sorry that things have been so miserable for you.
GI problems are up there on the list of bad things or down there on the list of what you don't want.
I am relieved to here that you are making some progress on the Primaxin. My son has improved one symptom at a time.(not always the one we were most concerned about!)
Are you the wonderful person who organized the retreat this fall? Maybe your body is demanding catch up rest.
An idea about tummy trouble. I know you have probably tried everything...
My daughter has gb removed,nausea, acid reflux..all that fun stuff. (This is improving slowly)
She does not feel like eating. She, like you has her short list of what works.
I try different things and once in a while she likes it and it is easy on stomach.
I make it and put it in front of her rather than ask since nothing "sounds good"
Sometimes her tolerances drift and change a little.
It is a challenge to keep thinking of what might work. And discouraging to keep cooking,of course, when the food you take time to make doesn't work.
Perhaps you could enlist a friend to make you some snacks or meals for you to try. Maybe they could come up with something that will go over and would take the burden off you of trying to think of something to eat and fix it when you are queasy.
Wish I could send you a personal assistant to help you with all you are dealing with. And maybe a cook, chauffer...
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Guys,
Thanks so much for all the support. I think I'm starting to put things together in my mind now and understanding a little better what's going on, at least in the GI department. Here's what I think has been happening: The sleep study on 12/23 started me into a really bad tailspin that, among the other symptoms, has caused a huge crash in my GI symptoms that have been bad since the fall '04. I think the GI problems are symptoms of Gastroparesis, which I think I've had for quite a long time but it hasn't been bad for a while. So now I need to figure out which of my doctors to go to first about this (PCP, LLMD, straight to GI who I haven't seen in over a year) and then go from there.
Things are not getting better on their own right now and I'm losing a lot of weight very fast so it's very obvious I need some kind of intervention, and the sooner the better. (I have lost about 10 lbs. in the past 2 weeks. I'm not really skinny to start with but at this rate there won't be much left of me soon. And I'm bound to get malnourished if this keeps up.) I'm trying to eat what I can handle but the list is quite short and seems to fluctuate. Sometimes applesauce hurts my stomach but if I eat it slowly I seem to be okay. I'm taking my Zofran on a better (more regular) schedule and that seems to be helping somewhat, but still feeling sick after eating anything, so something is obviously not right.
Shaz, thanks so much for the support. It's so great to hear that you and Jon are doing pretty well! And Jon must be getting pretty old to be sprouting facial hair! They really start to grow up fast after a while, don't they. My sister is turning 16 on Saturday and I don't think I'm ready for that but I guess we can't stop people from growing up!
Nancy, thanks so much for the support and the info that your doctor recently discussed the topic of Gastroparesis and Lyme. I also have Dysautonomia (autonomic nervous system dysfunction) which could be caused by vagus nerve damage. The vagus nerve is also what controls stomach emptying so it makes sense that these two conditions would also go together. I think I've probably had GP for a really long time and I just haven't been able to put two and two together until now (and also haven't been unable to eat for a while).
Char, yes, I'm the one who has been organizing the retreats. I think my body is telling me I need a break from things. I wasn't doing that much but I'm going to have to re-evaluate my priorities for the spring and unfortunately some things are going to have to fall by the wayside. I have to go back to school for one class (I don't have a choice in the matter and my parents are both happy to help with the commuting so I should be able to handle the one afternoon a week up in Boston). And I'll be teaching my two normal theater classes but the classes themselves are much more relaxed this spring so that will be good (and there's no guarantee that they will both run, but I really need the $$ and am really looking forward to both the classes). Other than that, though, I'm planning on being minimal with my comittments.
Thanks for the suggestions of things you've tried with your daughter. Honestly, it seemed like it started out as simply a lack of appetite but it's clear now that it's not just that but the more serious underlying problem of me getting very nauseous whenever I put anything in my stomach. Today was a slightly better day in that I managed to get a whole bottle of Boost down throughout the day, one or two sips at a time. Liquids are much easier than solids so I'm eating applesauce and Boost type things with some saltines and occasionally something else thrown in, sometimes with bad consequences. I do live with my parents so they cook, but I just can't handle food right now.
And everyone else, thanks so much for the support! It means so much to me and I'll keep you all updated on how I'm doing.
posted
Hey hang in there. If i have learned anything at all in the last year since I have been off antibiotics is that this disease in the chronic form ebbs and flows. I had a similar experience recently. I was doing real well, going to the gym 3 days a week, keeping up with housework etc and studying when I came down with a bad flu/cold. That put me in bed 3 weeks before christmas. I still am not up to par again.
It frustrates the heck out of me too. I have spent the better part of today sleeping again.
I have liver disease and cannot do anymore antibiotic treatment for a while if not ever. This developed after only 8 months of treatment IV--and I have late deceminated lyme and have had it probably for almost 20 years. I got a bit better and then would get worse and then two steps back and one step forward. I am riding that same rollercoaster now along with dealing with depression and my marriage and going to counceling for that to see if it can be saved.
I try and take it a day at a time
I wish you healing and happiness
Cathy
-------------------- There is light at the end of the tunnel. I went from existing to living again. You can too! Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
HI Annie,
I'm so sorry to hear things are rough. This disease is too much. It just is.
I have been on Topomax before, and yes, it will take away all of your appetite! In fact people regularly lose weight on it. (So I was told). If it is helping your headaches then maybe it is necessary, but I have been there w. no appetite, and it is actually not the nice feeling one would think.
How do you do with macaroni and cheese? (I don't know what GP is, so I don't know what you can handle). If I am finicky then I just broil a lean cut of steak in the toaster oven. Mmmmmm. I wish these things could help you.
I guess you know all about ginger to help w. nausea. Peppermint or spearmint tea helped me, too.
Sometimes I wonder if we need to eat things w. a little fat in to absorb some of the stuff floating around. (A totally non scientific musing, as I am not a Dr.).
I'm thinking about you and sending good thoughts and hopefulness your way. Take care of you. Get some treats for yourself at the mall if you can, ok? We love you. Sending good, healing thoughts.
(((hugs))) henson
Posts: 1066 | From East Coast | Registered: Dec 2000
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
You take care of yourself, Annie, and get on the other side of this rough patch soon. Like Henson, I'm also sending good thoughts (and prayers) your way.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Oh Annie, I am so distressed to learn you are experiencing such difficulties. You have been such an inspiration to me and my daughter and I so admire your courage and perseverance in the face of this horrible disease. You are a truly amazing person and I know you will get through this. Please know that we are behind you and that MJ and I are sending you our positive thoughts, energy and support.
Wishing you Wellness, Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
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