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Old 08-13-2006, 02:10 PM   #1
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Unhappy Wanting to stop all treatment...

Hello Everyone:

It's been awhile since I posted. Life has been crazy. I'm at a point where I want to stop taking all meds. I am tired of taking medicine all day long. I don't see me getting better. As a matter of fact, I think I'm getting worse. I literally want to sleep all day long. I have no stamina. I am tired 98% of my day. I get up in the morning, do a few things and back to bed I go. If my kids don't let me sleep then I am a monster to deal with. My behavior has changed. I am irritable most of the time. My kids don't understand why I am so grouchy, or why I can't do certain activities. Heck, I don't understand. My husband constantly tells the boys that I am sick but when I need to lie down on the weekend HE puts up a fuss. My husband asks me all the time if I feel any better? If I think the meds are working? If I feel like this doctor is helping me. etc. etc. What do I tell him when I truly feel worse then when I started?! How do I tell him that I want to stop all meds and go back to my life before the lyme diagnoses?

I haven't been compliant lately. I have only been getting 1 dose a day in with the doxycycline, valtrex and biaxin. I haven't been getting it in as required becasue either 1) we are out and I haven't taken it with me or 2) I haven't been eating due to nausea. I've even thought about not getting the valtrex and biaxin refilled. Why am I doing this? On top of this I have severe burns on my arms, hands, face, nose etc and there isn't thing I can do to prevent these. I HAVE MELANOMA and I am taking a drug that increseas my chances of having a reoccurance. I need to decide whether it is really a benefit to me to take the doxy when it can increase my cancer risk. I have 3 boys that just started playing soccer. I got fried on Saturday even though I had 45spf on. Sure I can wear long sleeves but then I sit there and roast. I finally got out the big golf umbrella. I am just so sick of this.

I'm sick of being tired. I went to 2 stores today and then had to come home and sleep for 2 hours. My house is a mess and I dont care. My kids fight all the time and I don't care. What's happening to me guys?!

Should I schedule an appointment with my doctor and tell him I no longer what the treatment? I've only been doing it since the end of May. Please tell me what to do?

Thanks.

Cindy

Last edited by cindyx4; 08-13-2006 at 04:37 PM.

 
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Old 08-13-2006, 04:19 PM   #2
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Re: Wanting to stop all treatment...

Hi Cindy....it can be real tough going through this and my heart goes out to you that you feel so yucky....and plus having children to take care of and run after has got to be exausting....I know that the things Hubby says can be tiring also...doesn't sound as though he is to informed about lyme...not to many people are unless they have it...I got the same thing from family, friends and X-husband...it is hard on them also..and they want a majic pill for us to take...and I can understand you wanting to stop your treatment...but you know in your heart you won't get better unless you do it...Sounds like you need to get a pill box for your purse.and maybe get on of those that have monday thru sunday and you put your pills in it...then possibly you'll beable to stay on track easier...you can't get better unless you stay on track...I was on antibiotics for 6 years and took this last year off...now I am going to try Dr. J's alternative tinctures and see if it will help the last bit that is in me...I am so much better now than where I was...Cindy you have yourself, hubby and Children to get better for...don't give up okay....you really haven't been on treatment for all that long if you just started in May....I read others do detox's and feel better after doing them...and other things...you might want to try that also....

Don't give up...keep fighting...you will get better...

SOFT HUGS TO YOU.....

say Ekim is doing brown algea...maybe that would help you....

 
Old 08-13-2006, 04:27 PM   #3
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Re: Wanting to stop all treatment...

Cindy
Missed you.

First you need to call your Dr. Consider minocycline instead of doxy. It allows more sun. I was on it this summer and had no problems.. It is not quite as good as doxy but it was the best choice for me.

I fear by taking the meds incorrectly, you have allowed lyme to strengthen.

Please call the Dr and discuss this and soon.

Maybe set down with your husband and discuss this with him??? I think those around us expect a 10 day cure, thats what we were all taught with meds. But that is not the way lyme works. I can't imagine fighting this without my husbands support. If you don't have the support you need, or if you do and need more; We are here.

Prayers.....Marsha

Last edited by Pearlscale; 08-13-2006 at 04:29 PM.

 
Old 08-13-2006, 05:31 PM   #4
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Re: Wanting to stop all treatment...

Hi Cindy. I am sorry things are so hard right now. We can understand how you feel.

Going through treatment for Lyme can be very difficult. It takes time, and it is normal to feel worse before feeling better. It is very important for you to take the meds the way they are prescribed. It is not good to take them sporadically. You are fighting a serious infection right now, and this can cause great fatigue.

Please do not stop treatment. The infection will get worse and become harder to treat if you do. It is not your fault you are sick. Do you have family or friends who can help out some with your boys? Do you know if there is there a support group in your area?

Keep a supply of all your meds in your purse so that you always have them with you. These meds can cause nausea, but so can not eating enough when you take them. Doxy especially can cause nausea. Do you eat something substantial and non-dairy when you take it? Do you drink a full glass of water when you take it? This will help tremendously. One thing that helped me with nausea was papaya tablets. You can get them at most healthfood stores. When the nausea hits, chew on a couple. They really help.

Hang in there okay? With proper treatment, you can get better. Always remember you are not alone.

 
Old 08-13-2006, 08:33 PM   #5
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Re: Wanting to stop all treatment...

Hey Cindy, Sorry to hear that you're so down. It certainly isn't easy to feel bad and tired all of the time. I feel like stopping my doxy sometimes and I've only been on it for a little over three months. How long have you been taking your Lyme meds? If it's been years then maybe the cure has turned into the condition? Anyway, chin up and do what your body and your doc tells you. I wish you much success in feeling better, we're all pulling for you! Take Care, M.

 
Old 08-13-2006, 09:29 PM   #6
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Re: Wanting to stop all treatment...

hi cindy... sorry to hear you are not doing better, how long have you been having the same med? if its been a while maybe you need to change it..mayble you ar elow in vitamines? specailly b, mayble you have some anemia because abx?have you check that recently??i remmeber denisse recomending this vitamine called veggie plus, all natural and that gives you energy, maybe you can try some of that.... keep us posted and hope you find an answer and feeling strong soon, big kiss!

 
Old 08-14-2006, 04:47 AM   #7
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Re: Wanting to stop all treatment...

Hi Cindy, I'm here with a pep talk. We all need one now and again, especially when we are on treatment for awhile and the symptoms get worse instead of better, I needed one last week. Usually when I am disgusted with my pills and the whole regimen and losing my freedom, I read my books again that talk about how sneaky lyme is and how it affects every system of the body. Then I think about how much it took away from me for the last twenty five years and I get really angry. That usually puts me back on track and start taking my pills diligently again.

The truth is that you may be on antibiotics for a while. I only say this because it's rough on the mind if you don't decide now to be in it for the duration and really psych yourself for a marathon and not a 500 yard dash. Trust me, you want to win this race, you want to set your sights on that finish line and just focus. Knowing that treatment takes time, and knowing that there are many different kinds of antibiotics on the market, I find for myself that it's best not to take doxy in the summer. I know that doctors like to start out with doxy, but it seems like that is an awfully discouraging way to get treatment and spend your summer, especially if you have kids and they want to go out. You have been on doxy for a little while now. If it's a matter of switching to something else or not taking anything at all, I would switch.


I have learned alot about antibiotics since I got rid of my lame insurance company. One of the things I learned about lyme and doxy (aside from the fact that doxy does work) is that doctors know you need to take something for a long time. Doxy is cheap and insurance companies don't harrass the doctors when you are on a cheap drug long term. I'm not blaming the doctors, they aren't wrong to give you doxy, because it works great and I don't think they are trying to be sneaky by prescribing it. I just think that they need to be asked by the patient if the patient wants to switch, because if you are happy, and the doxy is working, and the insurance companies aren't screaming, then they figure why mess with a good thing. Unfortunately, the doctor doesn't know that you're actually not happy at all, you want to go off the drug and you are in the sun feeling miserable. The best thing you can do for yourself is tell him all this. Doctors know there are other options, but they also always start with the one that keeps the companies off their backs. I would do the same thing if I were in their shoes, if the patient is content and the drug works, why not?

As for biaxin, I lost 35 pounds on that drug, I could not eat a bite of food and my digestive system was a complete wreck. I had intestinal cramps, severe stomach pains, and three times I soiled myself without even knowing what was going on, two of those times I was not home. Sorry to be gross, but I'm just saying how it is. I won't take that antibiotic ever again. But so what? There are so many to choose from. I have been on about 18 different ones already. If I have a problem with one, I call the doctor and I say, I'm done with this thing, give me one I can live with.

I hope you don't stop treatment. I know it is frustrating to be so tired and to have to do less. My kids do a lot more for themselves now and my husband has to take me home early from just about every event we go to. I know he's sick of that. It's not your fault that you're sick, you aren't doing this to them, you didn't choose this. You are all in it together and everyone has to do the best they can with it right now.

How old are your kids? Will they be in school in a few weeks? I am looking forward to mine going back on the 31st. I think they will be happier too.

I hope things get a little easier for you soon.

 
Old 08-14-2006, 01:50 PM   #8
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Re: Wanting to stop all treatment...

Hi Cindy!

I can relate 100% to your post. I've been there, and so have a lot of us.

So grab a big tall glass of filtered water and your Doxy, 'cuz here's another pep talk!

I also go through periods where I wonder when in the hell I will begin to feel better? How long does it take a stupid antibiotic to kill some bacteria for pete's sake? I've been on this medicine for 6 months - and no change! Should I stop? Should I switch? Should I give up? Should I swallow the whole bottle?

There are no answers. None.

I finally noticed an improvement at the 8 month mark (yes - 8 whole months!). Even still, I am only 20% better. That 20% motivates me to keep going and keep fighting. You know that I still have bad (really bad!) days.

Lyme is an insidious bacteria that infects and "hides" in just about every type of human tissue; brain, cardiac, muscle, joints, blood etc.

The drugs that we take are effective but since Lyme loves to hide and hang on by hook & crook - the medicines take longer to kill it than say, a strep throat.

Its been three months for you. I hate to say this but thats not really a long time. I wish I could tell you the name of a pill that will help you, but I don't know one. I wish I could tell you that next visit, your LLMD will switch you to antibiotic X and that you will feel improvement after 4 weeks ... but I can't.

Part of it is trial & error to see which anitbiotic kills the particular strain of Lyme that has infected your body. Part of it is how long you were infected before you got medicine. Part of it is the strength of your immune system. Part of it is how well your body detox's itself. Lots of factors with Lyme - thats why Levaquin works for me but not for someone else. Thats why I took Omnicef for 6 months and slowly got worse.

It's different for everyone but that doesn't help you, I know. Sorry there are no better words I can tell you.

At my three month mark, I also felt I was getting worse. I switched medicines. Three months later I was still feeling worse so I switched yet again. Each time I consulted with my LLMD who sincerely wants to see me get better and I follow her recommendations on which med to try next.

I was at my wits end. If my kids missed the bus, I broke down and sobbed because it meant I had to walk to the driveway, get in my truck and drive them four blocks to school. And that simple task was way too much for me to handle!

My son was sitting next to me on the sofa and I screamed at him for turning the pages.

I spilled a plate of food and it sat there on the floor for days. I skipped doses of my antibiotics because I could not remember to take them. If my kids were invited to a birthday party I freaked: how would I get to a store? How would I get them there? How would I remember what day it was or what house?

So many permission slips went unsigned.

I could not brush my teeth, shower, pay bills, talk or walk. I could not keep my eyes open for a whole 8 hours while at work. I would crash on my "lunch hour". I would sleep for 13 hours and wake up tired with a fever.

I was a mess, my house was a mess -- my life was a mess.

Then, with the help of the folks here, I realized that I was stressed and guilty and mad as hell because I could not do the simple, household, soccer mom things I used to ... because I was not the same person. Literally.

I am sick and I had to accept that changes were needed because I had to focus on me and getting myself better. Only a healthy mom can do healthy mom stuff.

So ... here I was, living on my sofa because I could not handle going to my bedroom. Bags of garbage piled near the front door because I could not remember garbage day. Bills going unpaid. So tired. So very tired.

I asked for help.

If my kids had a school play, class trip, birthday party, etc., I had them call another mom and explain that they needed help getting to and from practice, getting this or that. These other moms never paid me much attention, but when we needed help - they were more than happy to jump in.

My son went to a friends' house after school and was driven home. My daughter did the same. A few of the other parents would come here and pick my kids up and then bring them back home after a play date or a school trip.

My neighbors think I'm a loon and my family has been avoiding me since I got sick. I was pleasantly surprised at how these other parents (moms mostly) got involved. I also made sure the teachers knew how sick I was.

If my son forgot a permission slip, they had ways of tweaking the system so that he could go on a class trip. If my daughter needed to print a report (our printer was out of ink for almost a year), she emailed to someone at the school to print it for her.

My point is that you need to treat yourself as you would a friend. You are sick. You cannot go to soccer games and stand in the sun for 4 hours. You can have someone tape the game or just forgive yourself for not being there with a cooler full of gatorade, cheering the loudest.

You have to sleep. You have to find some way to have your kids supervised so that you can rest. If your kids have friends, get on the phone and explain that you need help. If the other moms won't help, call your church, call the high school (free babysitters), call the township. Someone out there will watch your kids while you rest. Wish I lived closer - I'd send my kids over there to help you!

Forget dinner. If you can't cook, get microwavable meals. I hate to say this but if your family doesn't like it - too bad.

You concentrate on getting back on track with your medicine. Make a chart, fill a cup with your daily pills, line them up on the nightstand. What ever it takes.

Your kids will be fine if you miss a season of soccer. What they need is a healthy mom. You will be teaching them good lessons by taking care of yourself right now.

Maybe you can hang a happy face on your bedroom door when its Ok for you to be disturbed and a sleeping face when you cannot be disturbed.

I know I went on and on here - hope you're still reading! - but this is what folks said to me when I was exactly where you're at.

Do not give up! You will feel better someday!

I take Doxy too and I wear long sleeves and gloves and a huge hat and I feel silly walking around like this - but too bad.

Hope I wasn't too long winded.

Peace and health and rest to you!

Last edited by 6Blues; 08-14-2006 at 01:57 PM.

 
Old 08-23-2006, 05:10 AM   #9
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Re: Wanting to stop all treatment...

Hello everyone:

Thank you for all the kind replies. I am so sorry I never responded back. I went through a little funk after I posted this message. On top of that I have been under extreme stress. We had to place my winderful, beautiful mother-in-law in an assisted licing facilty over the weekend. I never cried so much in my entire life. She has stage 3 alzheimers but she would deny this if asked. Anyway, I spent the day Sunday throwing up because I was so upset, so sad. The facilty called me yesterday and asked me to talk with her. She got on the phone and started crying and begged me to come and get her. She told me she would not take up much room and that she wouldn't talk or eat anything. She broke my heart. ;(

We then had blood work done on our 13 year old sone a couple of days ago and received a call from the doctors office asking us to come in and discuss the results. It's never good when they call. I got a copy of the results and he has a lot of things that are abnormal including his cholesterol. Normal for him is 0-99 and he is at 145! His alkaline phospotase is double the normal limit....this is a tumor indicator. We are so scared. I haven't slept in days. I literally could close my eyes while typing and sleep but I can't. I have 2 boys I am getting off to school now and then 2 more an hour later. My husband decided he would stay home today and catch up on his sleep. He said he would get up with me with the kids but he is in bed snoozing. I'm jelous that he can sleep and I can't. I have a pretty busy day today so I don't know how I will function.

Plus this doxy is killing my skin. I just stay fried no matter what I do. I can sit under a big golf umbrella and still burn. MY poor hands kill me from being so burned. I don't know about you guys but I feel like sunscreen makes me burn more. I am so whinny~~

Thanks for always listening.

Cindy

 
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