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 Post subject: Changing medications?
PostPosted: Wed Aug 05, 2009 3:17 pm 
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I went to my very first lyme support group on Monday. I was telling everyone what meds I was on. They kind of told me if I have been on a certain drug for a long time I should switch to something else. I've been on zithromycin and placquinil for two years or more now, and I had been on it for a while back in 2002. They seem to do the best for me.......I'm still really sick, and getting new things all this summer. I know we discussed flagyl which my old lyme m.d told me I would get very ill with it. I never was put on it. I can't afford to be more sick, I'm due to start back to work in the kitchen at the school I work for in a matter of 3 weeks. What is the benefit of changing meds? The ladies suggested dodxycycline or minocycline. My m.d. is not lyme literate, but he tries every way he can to help me. What should I do? Should I ask him to put me on another set of meds, and what do you guys think I should try. My zithro is 250 mg, once a day, and plaquenil is 200 mg twice a day.
Also one of the support groups members is also a member of TALD.......hello to you......I just can't remember what you said your username was? So if you are out there, send me a line. And thanks to all you out there that are suffering so but always are out to help others.


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 Post subject: Re: Changing medications?
PostPosted: Wed Aug 05, 2009 9:47 pm 
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I have to say this highly a personal choice. I have been on the same combo off and on for 3 years, Biaxin/Amoxi. I seem to do the best on it.

Every time I have tried something else I so far, have found the herx intolerable. So I am sort of frozen. I recently started Artemisinin. I am not as afraid to add in natural things, Olive leaf extract even Salt/C.

I don't know that I would let others tell me what to do, discuss benefits, etc. with your doctor of changing abx. Other's telling you what worked for them, may NEVER work for you and vice versa.

Like me though, I am not really going anywhere, sort of holding steady and it is likely wise I try to switch to something else, but I certainly don't want to be layed up either and that can happen.

I am seriously considering IV and I have to try Ceftin first (I might be allergic to Rocephin) and also my LLMd as suggested trying Septra. He doesn't like hard herxing at all and encourages me to try something and if I don't like it to back off.

Only 3 years ago when I entered the lyme world it was "popular" to switch meds at least every 90 days or so..many theorized the bacteria will grow resistent to long term use of one combo. I don't know about that. Lyme is a disease of hit and miss when it comes to treatment...if something is making you feel better stay with it my LLMd said. He also said recently that if you feel no difference that is positive within 30 days dump it and move on. This is different thinking, like I said than just 3 years ago.

I do feel the "push" from myself, to try something new...but I gotta believe that "I make my plans and God is directing my steps"..for whatever reason I may not know.

I know it is much easier to stay on a drug we are familar with, because we know how bad or good it can get. When swithching you may have a set back OR you could make leaps and bounds. This UNSURE thinking has kept me on the same abx.

You decide w/your doctor and don't push herxing, it isn't good! A true herx is feeling worse for a short time and then feeling better. If feeling worse lasts longer than 2weeks I personally wouldn't continue.

Input is fine from support groups, but ultimately YOU decide what is best for you or what you feel comfortable trying.

No matter how we slice or dice this, treatment is a marathon, not a sprint and no one has THE answer for everyone. You never know in the long run what they will discover, maybe staying put on a certain combo is best..no one knows.

Hugs,
Dana

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 Post subject: Re: Changing medications?
PostPosted: Fri Aug 07, 2009 10:00 am 
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Thanks Dana. I'm just about ready to start back to work in the school kitchen and I cannot afford to even feel one bit worse. I'm not getting better with the placquinil and zithro, but I am steady.........my cognitive and eyesight are worse, but I can still get out of bed. It's just hard thinking about going back to work........I live like a zombie between work, keeping the condo up, making meals, paper work. I'm really not pepping up like I have in years past during the summer, but at least I can think, when I go back to work I can't think. I glad my life is so automatic.......that is how I get through it. My pay is only around $7,000 for all the stuff I do in the kitchen. My husband hasn't had a job since we were married 4 years ago. He's a middle age man with 2 bachelor degrees and an associate and we live in Michigan so he can't find a job anywhere. I also, but not very well, sell Avon and am the President of our condo board. I've been trying to get off the board for two years, but when you don't have anyone who wants to be on the board it could put your whole condominium in jeopardy. Geez, I think I'm not in a very good mood today. My husband is really a nice guy, but he said something that I haven't been able to get over in the last couple days. I was so excited after I went to my first lyme support group meeting hearing that twin of dar had gotten social security. I went home and told my husband. I thought maybe we could try it, and his reply was you can't get social security if you are working. They are going to look at you and say if you can work you don't need social security. I felt like I was back with my first husband. I had 4 kids I was caring for and I babysat 12 others to try to help with the bills, I tried to sell Rubbermaid at night. I remember when my first husband said he would leave me if I didn't get a real job. That's when I got the job at the school, at least I could be home when my kids were, but that didn't satisfy him.......he just always hated me. Now when I see him the whole deal is, he says to my husband in that flippant kind of way.......she was always sick. My dad had called me a bum when I was 11 because I used to come home from school and lay down in my bed. I was off school alot, I was even hospitalized alot. My dad is like the energizer bunny, he loves to work and hates to sit down. He just got laid off a factory job he has done for 5 years and he's 82. When we moved to a new city when I was 12 the school sent me to a clinic to see why I was sick. Fortunately the women who would talk to me their conclusion after a year was I really was sick. Then the psychiatrist had to talk to me and my parents, and his conclusion was that my mother was to over protective and he wanted them to put me up for adoption.....I was 12 years old. My mother told me that about 10 years ago. She jokingly said it was a good thing I was an only child because if they would had more kids maybe they would have done it. When I was in junior high I remember asking my 7th grade teacher for my past homework because I had been in the hospital for my kidneys.......her reply was 'if you can be here for 3 days in a row, I'll give you your past homework'. The same year when I would come back to school kids would say to me, 'oh, I thought you didn't go here anymore', then it became my nickname was 'part time'. Don't get me wrong the Lord gave me wonderful friends, and I still have wonderful friends..........but I guess the bottom line is I feel so second rate. I guess I just had to get this out. So I go back to work on the 24th and I may still send you posts, or I may not depending if I can think. I still have to get things out. When my only daughter was in high school my parents and friends and I would go to her baseball games. I remember saying to my friend, that possibly if my oldest son marries his girlfriend I could possibly be a grandmother in a couple years.......my mom overheard me and for everyone to hear she turned and said, 'you are not healthy enough to be a grandmother'. Well, I have 2 biological grandchildren and 2 by my sons first wife, by marriage grandchildren. I don't see any of them. I just don't have the energy.......and you know who takes care of my oldest grandson because my first son is a single father........my 82 and 81 year old parents. They take him all over the place. Places I don't, because I'm too tired or I'm to sick. I guess I had to just get this out. I'm just running the gammit between crying and just being angry lately and wondering when my current husband will get sick of me and wished he hadn't married. He had been a bachelor for all his life. He was 51 when we got married. Oh, he probably won't mention divorce, we're both born again christians............he just probably will just settle. I guess I feel this way, if I remember right every year when I go back to work. Geez, this is pretty bad for someone who is now taking xanax. I just know that I have to keep working, and keep going, because that is what I am supposed to do, and in the end it doesn't matter how I feel, I just have to do, I suppose just like you all have to do because you know it's not going to be any different and you've got people depending on you to do, just keep doing. I saw the movie 'under my skin'.........I realized then that if the lord doesn't heal me it just won't happen. I don't have the insurance, and even if I had the best insurance out there I probably wouldn't live through the treatment. So maybe the Lord is doing me a favor for just being steady. After all maybe since he controls everything this is the way he wants it for me, and I know that with Jesus he only wants the very best for me, no matter what happens. I guess this just isn't a very good day.......tomrrow I'll be better. Thanks for listening........I had the Macomb Crisis center call me about a letter I wrote to a lyme group which I can't even remember writing.......I have no idea what letter that was, but they got in touch with the crisis center because they were worried, I just don't feel comfortable calling them, I'd just rather type it out to you guys, since you are all lymies and can understand this and are Christians as well. The one strange thing was one of our state reps got a hold of the letter to, which is bizarre and called me and said she is pushing for more money for lyme research. I really talked her ear off and told her that's great but please work on behalf of the doctors so they won't be hassled and lose their medical licenses, because then we have no hope at all. I know she didn't get it........but at least she is sponsoring a bill and that's good. I really had to just get this all out. It's just kind of been this kind of summer. I try not to cry when my husband is around because he doesn't feel comfortable with me crying. That's why he doesn't really like me being on lyme sites because it usually does that to me. It's not his fault, he was kind of raised in a family where they really couldn't show emotion. So he has gone to church to do some work for them. Volunteer, of course. I know that my redeemer lives, don't worry about me doing something drastic......I won't......I think I just needed to say it all out loud and maybe cry some and now I will feel better. Thanks for always being out there listening and praying. I do the same for all of you.

Heidi


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 Post subject: Re: Changing medications?
PostPosted: Sat Aug 08, 2009 6:36 pm 
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Location: Michigan
It feels good to vent, doesn't it? That's what we are here for.

I am so sorry for all you've been through. Like Dar and I, it sure seems like you've had Lyme for most of your life.

God is with you and you are in my prayers!

I think we are in the same town - where Sara Roberts is, right? The state representative? You can PM me if you ever need to talk to someone close by. This forum is a lifeline, too, as you know.

Many big soft gentle hugs!

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