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Posted 8/12/2009 11:27 AM (GMT -5)
I don't even know if I can sit here long enough to type this, but I haven't really been around and wanted to post something.

I had to stop my Biaxin because it was giving me bad heart palpitations/arrhythmias. The doctor decided to give me 3000mg of Amoxicillin, which completely TRASHED my stomach OVERNIGHT. I woke up in the most agonizing pain of my entire life, like someone had stabbed my liver and gall bladder repeatedly...my whole body was shaking...I had diarrhea and felt ready to vomit. I recorded myself once I finally got back into bed and I look like a ghost in the video.

So, the doctor now said I needed a PICC line which I recently found out would not be covered by my insurance. I have been med free for two days and I feel I am at the beginning again. Two months of work. Down the drain. My heart feels literally swollen in my chest and I am having difficulty walking. I tried to figure out if this is because I'm off meds based on my log of symptoms, but I realized that I started feeling bad even before I terminated this treatment...just not THIS bad. I never though I'd feel THIS bad again.

My mom said she is 'done with me' because I won't take my medication. She does not realize my body simply cannot handle it right now. If I can barely stomach food, how can I possibly take an antibiotic? That sounds like a stupid question, but I've had to ask her that repeatedly. She said she will not 'be my bank any longer when all I do is sit on the couch and do nothing.' Does she truly believe this is the choice I have made for my life?

I needed to order my LDN today and I told my mom 10 days ago that I would need to order it IN TEN DAYS. I went through absolute HELL with her for the last two and a half hours and she just now said I could put it on her credit card. She said 'the doctor is a quack...that LDN has never done anything for you...you're still sick and I'm not paying for it.' She only agreed to pay for it w/her credit card because my dad told her he would give her the cash later on today.

I hate that now that I have finally decided to fight and to stick with it as best as I possibly can...there are other people making the choices for me. I told my mom that in her deciding to 'be done with me,' ultimately that means that I have to be done as well, since she is my only financial resource. I tried to make clear that in what she thinks are little decisions to give up, she is actually holding my life and well being in her hands.

She does not listen. I continue to disprove her point by point about her beliefs about treatment, my illness, my body, my symptoms...and once she has nothing left to argue with, her answer is "Well, I just don't feel like getting that medication for you right now."

Unbelievable, isn't it? And the funny thing is...I always said I would just end my own suffering if it got that bad...and now that I saw it could get better...I don't WANT to end it...but I have someone taking away my ability to fight for myself because they don't 'feel like it.'

I'm somewhere between speechless and screaming; I'm not sure.

Posted 8/12/2009 11:44 AM (GMT -5)
Oh Jen. I'm so sorry. That really must be tough. Whatever you do- don't stop fighting! You CAN beat this! It is tough to do without the support of your family, but remember that everyone here is supporting you.

I'll be praying that you find a way to afford the PICC line. It will not give you the same stomach problems as the pills, and it is supposed to be much more effective for neurological issues.

It sounds like your Dad is more understanding than your Mom- could you get financial support from him? Or get him to talk to you Mom?

Or what about asking your LLMD to talk to your Mom- I'm sure you doctor would support your decision to take a break on the antibiotics. It won't do any good if you destroy your stomach taking the meds. And your doc might be able to help explain what you are going through.

Or (worst case) what about making an arrangement with your Mom where it is more of a loan? You could keep track of what she spends, and then pay it back when you are better, and can work.

I will be praying for your parents- that they find a way to understand what you are going through. And I will be praying that you get their support.

Please, whenever you feel sad, or like you want to give up- come talk to us! Are there any support groups in your area? Does anyone on this board live close to you? You could see if they do, and get someone's phone number (I would, but since I'm in Canada, long distance and time differences would be a killer). Or even emailing people- I know there are quite a few of us here who allow emails.

And keep us updated- I (and I'm sure everyone else) CARES! Remember that. (If it wasn't obvious from the obscenely long post I am making).

I'll be praying my butt off for you!

Hugs and love

Nicky
Posted 8/12/2009 1:47 PM (GMT -5)
Jen,

Do you want me to call her!?! Seriously, that makes me angry! She needs to understand that we do sometimes have to get off and give our bodies a break. If she had me for a daughter, she would have given up a long time ago! I'm very sensitive to everything.

Maybe just leave her be for now. Let her cool down so that she can start thinking clearly again. Have you ever given her information on Lyme Disease? She doesn't seem to know alot and I think she may think that you're supposed to get better and not have ups and downs. It seems like she's getting frustrated that you are taking steps back BUT that is what Lyme Disease does. She needs literature on it.

I hope she changes her mind and comes to her senses soon. Could your dad maybe help you out somehow?
Posted 8/12/2009 4:55 PM (GMT -5)
Chantel...I seriously thought about asking you to call her earlier but I'm sure she would embarass me with her ignorance or make me look just awful. I know you know me well and have a solid opinion of me, but she is very manipulative and would make me sound like an ungrateful, lazy brat.

When I told her yesterday that I was done repeating myself when it comes to this disease or any illness that I've tried to educate her on...I suggested she go online or get material and try to understand it herself and she said "I'm done reading. That's what YOU do all day." And I said yeah mom...that's the life I chose for myself...to sit around for hours on end trying to find out what's wrong with me. This is when she gets into the fit about me not doing anything.

Of course, two weeks ago up until a few days ago, this was never a discussion. I was doing better, getting out of the house, etc. Then when it goes downhill again, she thinks it's because I just decided to stop treatment. NO. Treatment decided to trash my system, and the only thing I can do about that is try to repair it and start again!

She doesn't get it. I thought she was getting there, but maybe she never will. My dad just dropped off my Valium that he picked up for me. He left money for my LDN that I ordered earlier, and I said TAKE THIS DVD HOME WITH YOU (Under Our Skin). He was about two minutes out the door before I called and said...don't mess around when you're watching that. I mean, watch it, and pay attention. Call me afterwards. He said he would.

I still feel like there is a ticking time bomb inside my body and I'm just waiting for it to go off. Constantly. Every moment now. I feel terrible, and I'm just waiting to explode into a million tiny pieces of wreckage in the air.
Posted 8/12/2009 5:22 PM (GMT -5)
Jen,

Your doctor may need to sit her down and explain things to her. This is all so ridiculous. My God, we need our family the most for support. You know, my mom is the same way and I'm so glad I don't have to depend on her!

You may also need to double up on your probiotics. When your mom settles down, ask her to look into a supplement called GI Repair Nutrients. This supplement has helped my stomach SO much. My internist recommended it. You can get it at a health food store. You can also take it with other supplements.
Posted 8/12/2009 9:15 PM (GMT -5)
Jen,
I was wondering how you were doing. Sorry that it's rough right now. I know we are not your family and it's not the same, but please know that we do care and you do have us pulling for you. Like CG said, maybe your mom needs some time to let things settle. Maybe once your dad gets to watch the video, he will be able to understand things better and help her to understand what is going on with you.

CG also mentioned the probiotics. I was also thinking that maybe you need more. Does your Dr. know about your GI troubles? Maybe he can suggest the amount you should be taking and when, so that you can get the amount you need to get your gut back together. The Flagyl should help with that too.

It was while I was on the IV abx that I had to eat a very bland and dry diet, lots of toast and pretzels and a little cheese, just to not have diarrhea. It took a while after I was off the abx before I could eat vegetables or fruit, or any kind of fiber. I'm finally getting normalized, but I've been starting to eat junk too.

Praying that you find the right treatment, that things between your mom and you will calm down, and that you can find healing soon.
Posted 8/12/2009 10:06 PM (GMT -5)
Thanks everyone...it was business as usual here at home tonight. She gets in from work and not a word is spoken for hours...then she goes to bed.

I sat on the couch reading while she ate, watched tv, and checked her things on the computer.

I'm really just so afraid right now...I don't like not having a plan...I don't like that I got better and now am back at the beginning again...and the worst part is that I can't do anything about it. I am taking probiotics daily and STILL am having trouble with digestion. Things haven't been 'normal' (you all know what I mean) in WEEKS. I have stomach pain after almost everything I eat. I know it is getting better...it's just not happening as quickly as I'd hoped.

I wish I had some answers, because it really just feels like I'm fading away and the only thing I can do it watch it happen.
Posted 8/12/2009 10:32 PM (GMT -5)
Hmm. Ok- since I have just started thinking about this. Are you on an anti-yeast prescription? Or doing an anti-yeast diet? I just know that yeast is a big problem for lyme patients, and the symptoms are all GI related.
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