New here and starting Topa and with a question

[spacebebe01]

New here and starting Topa and with a question

Back again, twice in one day. Good to hear from you WTE, so you get the op tomorrow, that should help you feel better, I have no idea what it must be like to be loosing the weight the way you are for no reason, it must be worrying adn I thought that this kidney thing might have given you the reason for feeling bad and the weight loss, but it seems not. It is annoying not to have a plan and no idea of what to do next, I know you where so good when you had your plan and it helped you such a lot. I think I will take you advice tho and just start with the L glut and a multivit.

Hi Wu, I am still taking bac but at around 20/30mg a day, Im not sure what its doing for me but it could be why I drink a lot less nowadays, I also take campral but admit that some days I am very hit and miss with it but I also think that is helping. Why did you go down oh the topa Wu I cant remember. I had a great 6 months on antabuse and stayed AF pretty easily, but since then I have not had much success with it, the last time I took it I was going mad with cravings like I never knew for the days I was waiting for it to wear off so Im reluctant to take it again, but the first time was so easy.

xx

[sunshinedaisies]

New here and starting Topa and with a question

LOL - well, I was logged off somehow! I was cleaning up my computer and think I somehow logged myself off...... anyway after many attempts I blocked myself but eventually got a new password and here I am again - panic stations thinking I would have to start all over again!!!

Space and Wu - I think you are both a tad confused - WTE has HAD her surgery. she is now at home recovering...... and hopefully will get better a bit each day.

Space - sorry you are going through some hard times. Wonder what got you drinking at 6 a.m. ? Then the next day just one drink? You do need to get your ducks in a row and make a plan - I do know that I need to as well. That was on my list of things to do for today - get my supps sorted and get them ready to take. I have been having my All-One again every day so am going to start adding the Kudzu and the L-Glut to the mix and whatever it was I was taking last december that really helped me. If I can get back down to 1-2 a day I will be happy with that. Play - you asked me if I really wanted to quit - If I am honest no I don't - I enjoy my drink at the end of the day - if I can keep it to the 1-2 a day I would be fine with that. I do however, want to stop smoking.

Wu - seems you are not sure what your plan is - you have ordered all sorts of everything but are not sure what you are planning on taking? I am missing seeing you here.... is everything going okay? Please let us know..... I am not sure when you are quiet if that is a good thing or a bad thing - LOL

WTE - so good to see you here again with a lovely long post! Awful about the money it has all cost you - really good that you can have a payment plan on 0% interest though. Just wish it all had a more satisfactory outcome. Please let us know what the results of your appt are tomorrow won't you? I too am worrying about your weight loss - it isn't normal and can't believe that the Topa is still contributing to it - that is long gone out of your system. Do you have any appetite at all? Did you before the Topa? I am worrying about you.....

Are you going to be well enough to go back to work on Tuesday? I know that you feel you need to, but maybe you should just do half days or something for a while.... once the Christmas stuff starts coming in you will need all your strength - we are already getting thanksgiving and Christmas stuff in. Halloween stuff has been out for a week or more already. I just want you to take care of you and get better. :l:l:h

Everyone else - have a great day - what is left of it anyway.

Play - we are still looking forward to the pictures..... one good thing is that the longer you leave it the younger I will look - LOL

Hugs to all,

Sun XXX

[playland]

New here and starting Topa and with a question

OMG it just happened to me, almost thru a very intelligent long post about all kinds of things and poof, I hit the wrong key and it disappeared, no energy to retype tonight, but will do tomorrow as I'm off work, promise the pics will come thru, WU, Do No Start BAC, WTE much love and more talk tomorrow, Space I'm glade to hear from you, wish you would get off the BAC also, it is really not safe because you can't just stop taking it, what if you went into the hospital like WTE in emergency, you could die from the withdrawal, ok will post a long one tomorrow.

Love,
Play

[spacebebe01]

New here and starting Topa and with a question

Hi everyone, ok now Im sitting here with a cup of tea an ashtray and my cigarettes to hopefully do a proper post, but I think I should split it into two seeing the way posts on this thread seem to dissapear.

Just looking back Sun Ive just taken your lead and got a pill box and put my supps in it, so there should be no excuses for not taking them for the next week, my L glut is on the worktop next to the tea, coffee, sugar and kettle tho and I still manage to forget to take it, but today is a fresh new day with my ducks getting lined up (love it sun) so hang on a min, ok its done, how can something so easy be so hard to do?!?!

Doesnt WTE have to have another op to remove the thing (stent?), but I agree with you sun that I am worried that you are going back to work too soon, can you drive ok? if you are on heavy duty pain relief are you just planning to stop them on Tuesday, I know your not enjoying sitting at home but I do want you to get properly better and there is a busy time coming for you I think, would an extra few days matter, or if your ok to drive can you just do a few hours each day to start with.

Ive never thought about what would happen if I where to go into hospital and not be able to tell them about the bac Play but I do think that with me only taking such a low dose it maybe wouldnt matter so much, maybe Im wrong. But anyway as I think you may know I have no plan about meds now, not sure what to do, I see a different psychiatrist at the end of the month and hope to get my ad's changed, I still dont take the risperadol because I am still hoping to get an ad that will help me enough without having to resort to an antipsychotic, and I dont want any more major se's from the things. I also get campral and gabapentin from my doc but have to admit I havent been taking them very well. The 3 times a day thing can be hard to remember. Mostley I take the campral because my doc prescribes it, its free to me, and I think it does help a bit, but alone it just doesnt do the trick. Im still thinking of giving topa another go, I think I maybe just panicked about the eye thing, if I thought that taking it for one week wouldnt cause permanent problems then I would be ok but its the stiuff I read before getting it that got me in such a tizzy.

Wu, how are you? lets see, so you have in your home topa, bac, antabuse, actually so do I the guy who wrote about the study in Australia isnt doing it from what I can work out and the bac and topa are only two of about 8? meds being used so I really dont think we can get much from that. Have you tried bac before, I have tried to do HDB twice but couldnt take the se's, I mean I was totally unable to function at around 80-100mg which probably wasnt even half way there. Also Play does have a good point as in being rushed into A&E and not being treated for withdrawals, I have o idea what would happen especially if you didnt have someone there to tell them what youve been taking, I have even read on here that in US that you still dont get treated even when you do tell them what youve been taking. If you want to stop drinking altogether tho antabuse may work with one med that will reduce craving, I aways thought you where doing ok on the topa tho, what happened?

Any your thinking about stopping topa kradle, what are the se's that make you want to do that, I thought you where doing ok as well.

Hi Nora, I dont think Ive seen you on this thread before, although I have seen you name, Im looking forward to getting to know more about you.

Im looking forward to reading you long one today Play

Love xx

[WaitingToExhale]

New here and starting Topa and with a question

Hello All from the WORLD of HELL with DRs! HA!

I will say, that for some reason I woke today feeling quite different – more upbeat than in a long time. And so I cruised through my final day off and waiting for the afternoon appointment with the DR.

This is not great – but I feel OK about it. Normally, he likes to wait one week before he removes the stint just to be a bit more sure there will not be swelling and another nightmare to deal with. But when I had called him last Friday to set the appointment, it was REALLY hurting and so he agreed on today’s appointment to remove it.

Well I got there (just home now) and we had a long chat. He wanted to see how I was feeling and I told him it all became easier after Friday. We did make an agreement to wait a few more days (as much as I hated to) just to be safer. Still no guarantees on it all, but it seemed better to just let it do it’s thing for the extra days. So back again Wednesday morning and thankfully it is just an office visit.

I asked him again how long he thought this had all been going on .. months? He said maybe ever a YEAR or more! Good grief! No wonder my energy levels were down! Depression? And so I asked him about the weight loss – although I didn’t mention the Topa as I now suspect that may have just been the final “push” for that to happen – but perhaps not the entire reason. (??)

He suggested he take another look at my CT Scan, as he was only looking for the “known issue” and he was TOTALLY SHOCKED when I told him how much I weighed just 5 months or so ago. He just thought I was a skinny person! HA! Noooooo. I am almost 25# off my normal weight! So we shall see if he spots anything else going on.

He told me he had been very shocked to find the infection in my bloodstream as “you just didn’t seem that sick”. *sigh* And again, can NOT explain why I had no fever. I voiced my concerns about him not finding it and he agreed to another CT Scan after the stint is gone and some healing done. He says he can push it through my insurance if he just tells them I am back in pain. So good on him!

So I can’t really explain my upbeat mood today other than perhaps after 2 weeks on antibiotics things are healing and better. I hope so!

WU: Please don’t take this the wrong way, but it concerns me how many meds you are just ordering and taking (or possible taking) and the mix and match and titrating too quickly on Topa. We KNOW Topa does not work if you go up too fast. And as for Bac – I agree … run for the hills from that stuff. It is NOT a drug to casually mess with and “forget” or just stop. It’s serious stuff and God forbid if anything happens to you and you need to go to the hospital – you WILL have major issues.

I don’t mean to be on my (or any) soap box about Bac or any other drug. But it scares me when I read someone taking it all so casually ( my interpolation after reading: “I will order some antabuse, and possibly some bac. and more topa. lol, I will just buy out the pharmacy” and perhaps not really understanding what the serious ramifications can be. Even at small doses (talking to Space too) it is dangerous without strict habits, charting and regimen and UNDERSTANDING what the titration schedule down can really be. Ok – off my soapbox and know I would not be saying any of this if I didn’t care ….

I am even second thinking Nal and TSM now, although I ordered it and made my mind up to give it a year. I don’t want to take ANYTHING until I get these other issues resolved, but even after that .. I am just not sure any more. Nothing will shake you to the soul than ending up in Emergency and having to disclose these drugs and wondering WHAT your options are now potentially limited to!

Space: Glad you are back with us again on a regular basis! Yes, funny how some drugs seem to have one reaction (and success) at one point and then are moot another time of trying it. I know that feeling with Topa! Hang in there … glad you have your L-Glut down for the day! HA! And I have really cut back down again on pain meds and think it will be OK to take a small dose if I work the shop. I really DO need to be back to 100% soon – so hopefully this is the beginning and I will work into it slowly.

Sun: Yes, I am going to try and work tomorrow. I can make it short days if I need to, but I really do feel so much better today. Not sure how I will feel after the DR appointment on Wednesday – but he is trying to convince me it won’t be that bad. We’ll see – I’ll leave Charlie home and decide after my appointment if I am going in or not, and can swing by to pick him up. =)

Play: Oh my! Was it the “Best Post Ever Part 2” ?? HA! Looking forward to the re-post! =) AND pictures. How are YOU doing?

And so, off to make some dinner and chill in front of the TV with all this crazy news happening. It will be an early to bed and another cool night for perfect sleeping. Yea! Heat wave is gone!

Hugs to all and everyone I missed ….

xo

[playland]

New here and starting Topa and with a question

Repost

Hi Everyone,
I'll give this another try tonight. I guess the main thought of my post last night was that I am veery concerned about drugs being taken so lightly, as in " Wu ordering BAC", and also that Space already takes it. I see that WTE just addressed this same issue in her post today, thank you WTE, I will go ahead and 2nd it. I just think that we need to really take these drugs really seriously, Space already experienced the hell of getting off of Serequel, and even tho BAC is used for some medical things, the high doses that are being self-medicated for AF have really awful SE and BAC is very difficult to stop taking at those levels. If you should find yourself in the ER for some reason, even if you tell them you are on BAC, they don't mostly know how to deal with the coming down and are sure not going to continue to give it to you. Please Wu and Space, this is a really serious drug. I know there are some people here on MYO who will try to push BAC on you no matter what, but please consider what you are getting yourself into.

I know that we self medicate with Topa and lots of supplements, but come on, Topa is nothing compared to BAC as far as SE and you can stop taking it at any time unless you take it for seizures. So,Come on people, please let's don't take these drugs like they are candy, let's continue to try our supps, books, hypnotherapy, exercise, Topa, anything but the really hard core drugs.

WTE, so happy that you are feeling so much better, maybe this doctor can sort out the weight issue, perhaps it does have something to do with the infection after all, maybe it was going on at a low key for quite awhile and will now improve. And yes, pleas re-evaluate your alcohol medications now, do you want me to send you the hypnosis CDs? Alcohol Freedon? I think I remember you saying that you already had them, but if not I will send them straightaway, I was going to bring them to the Summitt:upset: but that sure didn't happen.

Space, its so good to have you back, i missed you so much, i go nuts when my internet is out of order, i really cant live without it. So I am now planning to probably return to Spain sometime in November for my daughters surgery, so I won't see you quite as soon as we had planned, but we definitely will be seeing the Grand Flamenco performance and having a great time in November, anyone want to join us? Dizz?

Space, no wonder you started drinking at 6AM, being withou the Internet will do that:H:H:H

Sun, I got the books today, thank you sooo much, I miss having you here. Working on the "San Francisco Adventure " pictures, lol.

Bye for Tonight,
Love and Hugs,
Play:h

[Kradle123]

New here and starting Topa and with a question

Thanks for posting that Play:

I've been struggling with the Topa and your right- I need to take it more seriously. I'm going back on .25 mg and no more. The SE are just to much for me plus I'm on the lamictol. My doctor sounds like you...or you like him

I don't want to use these 2 drugs to check out like I did with AL. I'll stay accountable here I promise:h

:l

[sunshinedaisies]

New here and starting Topa and with a question

Hi everyone ....just recently in from work - Play I got yout text thanks - and left my phone at work - AGAIN !! I am off tomorrow so will have to go and get it. I do that way too often - LOL

Space - what a lovely long post from you! I took my supps to work with me and have left some there so I can take them at work. Remembered to take them ALL. I am not adding my tuppence worth about what the others are saying re the bac Space - but why do you take it? I mean - you still drink - so I was just wondering why you take any at all?

And Nora was going to meet up with me at the summit - I have known Nora since I started on this site so she started posting here a short while ago to keep up with me when I stopped posting on the other thread - she is lovely !! Constantly battling AL - tries Antabuse mainly but then will forget it and then counts the days til she can have a drink, has a drink and then starts the antabuse again - dear Nora. i am sad that I didn't get to meet her but hopefully will when we have a summit next year.

Are you over your bug Space? Mine has pretty much gone apart from a bit of a cough - and that will probably be due to smoking although someone else at work still has the cough and they don't smoke - LOL

Oh - while I think of it - I didn't lose a post and wasn't logged out of here when I was on here - I was off my computer and came to go on here and couldn't get on !! I think it was 'cos I ran a new cleaning thing and it wiped out all my cookies and saved passwords maybe...... anyway it is all sorted now. But I didn't lose a post - never have except for The Best Post Ever but I don't wish to discuss that!!

Hi there WTe - OH DEAR - I saw the first line of your post and thought "OH NO". However I am so pleased that the doc is going to do some more investigation into the weight loss and yes I agree that the topa may have just been the push - I don't think it is all Topa at all. I also am amazed at this having been going on for so long - wow - no wonder you haven't been feeling good for so long. Really good that he is going to follow up on it and that insurance can sort it. I think your upbeat mood just might be because you are feeling better and you might be seeing the light at the end of the tunnel and it ISN'T an oncoming train !!

How does he take the stent out if it is just an office visit? Isn't it deep in you? Or am I confused about where it is? Will you feel like going to work after having that done? I know i wouldn't!

Re what you said to Wu and space - I do agree with you - after you having gone in the hospital, it would have been scary if you had been on bac...... I am scared silly of bac - from what folk say about it and the SE's, there is no way I would ever dare try it.

So Wu - where are you? Are you okay? It seems a while since you have posted - are you okay? Is everything okay with your family? What is going on? post and let us know.... please?

Hi there Play - still looking forward to the pics - LOL !!! Maybe you can go to an internet cafe or something? WHY didn't we put them on my computer? Gosh I am feeling tired..... all of a sudden. I think I had better get me a milky (decaf!) coffee and go to bed.

I will check in tomorrow everyone.....

love and hugs - Sun XXX

[playland]

New here and starting Topa and with a question

Kradle,

Take care, hope things are going well for you:h
Play

[playland]

New here and starting Topa and with a question

Hi Nora,
Hope you will keep posting with us here, and BTW, the next year's Summitt is not very far off. So I look forward to meeting you then, but want to get to know you much better before then. Please PM your email address.

There is a lot of anticipation regarding the FAMOUS "San Francisco Adventure Pictures", if they are ever released:H:Hthe new release date is 9/18/2012.

If you are a member of "The San Diego Six plus a Few ", you will receive these pictures straightaway, if not, and you are interested in receiving a copy of these famous pictures, please PM your email address to "Playland" along with a good reason that you want them. I will make a decision about sending them to you based on my intuition, which means that if I don't know you, I will not be able to release the pictures to you until such date that I know you better:H

Wu, we are worried about you, please post.
Love and Hugs,
Play

[WaitingToExhale]

New here and starting Topa and with a question

Morning All!

A GREAT night’s sleep and I went to bed early and up a bit late this morning. Guess I still need it! I feel upbeat and positive and anxious to get back into the shop today. Still a touch achy, but not bad. I’m hoping to ride most of the day out with just Tylenol, although I will take my pain meds with me and see how it goes. I can skip out early if I need to – we’ll just see how the day goes.

Sun: Yes, they just remove the stint in his office. OUCH! And yes, it is up through my kidney where he rooted around. I guess it’s no big thing and he said I would feel fine to work afterwards. I’m just going to play it by ear and see how I feel.

And yes, it would have been a DISASTER at the Emergency room if I had been on Bac – although I gave up on that idea long ago. But, I was just about to start Nal! Yikes!

REALLY keeping my fingers crossed that this weight loss was very much intertwined with the mass infection. My appetite does seem much better and I actually have a bit of a sweet tooth! Something I never have! HA! I am keeping tons of fruits and crackers and treats out all over my counter and just grazing all day long. LOL I may even get the nerve up to get on my scale today!

Play: Yes, I need to get a plan back into action – just confused on what that may be. And no, I don’t have the CDs, so if I could borrow them that would be GREAT! Thanks!

I’m just going to stick with All One and L Glut for now until DR/I can get this all sorted out. There is a tiny fear in me that something else is array, but I try and push that thought from my mind.

So here is another dilemma! HA! I went to that undercover DR, who I love! I don’t really have any other GP to go to. And yet I really need to be onboard with one with all that has happened. This DR recently and this recent mess is only a Urologist. So now what?

My under cover DR has fake info on me. He prescribed 2 tyes of anti-depressants, both of which made me really sick. I then asked for NAL, and filled that script. I never get my blood work done from him as I ended up in the hospital. I have yet to receive a copy of all that happened (and blood work up) from the hospital, but some GP should get it on record for me as well.

So … do I walk back in with my REAL name and info and insurance stuff? HA! I only actually saw him one time in person. Will he remember me? Can I somehow in code, explain why I did what I did i.e. “I had a GF that used a fake name because she needed to discuss AL problems and couldn’t have it on her record”. Or something to that effect? Will he get it or be upset?

Now that I have TOTALLY gone over my “out of pocket” costs with my insurance company, it’s a good time to get EVERYTHING sorted out before the end of the year when my deductible “re-sets”. And if there is other “suspect” to this weight loss, it will be a GP that handles it, not my Urologist.

I need to decide this in the next few days and get moving on it. I suppose I could hunt down another new DR, but I really did like this guy. And, in some odd way, if he puts two and two together, he WILL know my real full story without it being on my record. That could be a plus for me. Hummmm.

Kradel: Hi! Happy to hear you will start off slow with Topa. It REALLY does make a difference – at least for me and many others here. Always good to see you!

So off to the shower and headed to the flower mart – it has been SO long! The Team will be shocked when I show up! HA! I’m trying to switch up my habits a bit and not sit on this computer too long in the AMs with my coffee, which begins rolling into wine cravings and the days go to hell. And so until later ….

Love & Hugs

[sunshinedaisies]

New here and starting Topa and with a question

Good Morning WTE - yes, you do sort of have a dilemma don't you..... you COULD go in there and ask him if you gave him a hypothetical situation, what would he think....... that way you aren't exactly telling him it is you, EXACTLY, but you are....... but not really !! And see how he reacts..... he can either throw you out on your ear or he can understand.

Explain about the not having the AL stuff on ones medical records hence the hypothetical situation....... and just take it from there. Just my thought anyway - and YES I do think he would remember you - from the little I know you on here, I would say you are a memorable person!! HA !

Well, last night I just had two Guinness and woke up feeling better than I have in ages - it really does make a difference to the way I feel the next day. two really is my limit when it comes to how I feel the next day - and as I am off today last night I knew if I had that third drink, i wouldn't feel all bright eyed and bushy tailed this morning. So, I stopped at the two. I also had all my supps yesterday......aiming to today as well.

WTE - take it easy at work today and come home early if you feel tired - it will probably wipe you out today!

Hi there play - looking forward to the pics - LOL - I am just going to record that so I can just hit the PLAY button when i want to write it down! As for intuition - yours about Nora should be AWESOME.

Hi there Kradle - you are doing really well with your AF right now - are you even taking the Topa? I think you are just doing really well - Hugs to you :l:l

Back from work and got my phone - need to start on a mountain of paperwork that has been staring at me for some weeks - yuck!

Back later -

WU - WHERE ARE YOU ?????

Love and hugs, Sun XXX

[spacebebe01]

New here and starting Topa and with a question

I am here and reading but will post -properly later, I am just trying to read my downloaded book to see what time I should take my topa. I know its 25mg for the first week and yesterday I took it late evening but I seem to remember reading somewhere about taking it around 4pm. Does anyone know? anyway I will be back later bye for now xx

[spacebebe01]

New here and starting Topa and with a question

OK I just found where I saw it, in the book it says morning dose and afternoon dose so I take it now at 5pm, any thoughts.

[spacebebe01]

New here and starting Topa and with a question

WTE I hope your day is going well and its not too tiring for you, either way I also hope you are not trying to do too much. xx