Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 when your treatment is done do you go back or better to how you felt before treatment?or do u clear and feel worse.i dont want to miss the summer with my son. <4thMoon@...> wrote: I didn't realize you could choose which company to use. I am rather stuck with whatever the VA uses. The treatment seems to be working though, whatever the brand, because I am undetectable so am happy for that. The one big difference about the VA is that they don't use procrit, I am taking something called Aranesp which is very similar but obviously has side effects that aren't listed for procrit like for me, when I started this, I had a severely increased appetite and gained weight, so I really have to watch it now. It is hard because I am hungry all the time. The interferon never affected my appetite to begin with. Guess I'm the odd one out, lol. Ally On 1/31/07, Sheena <mom4possums2002 > wrote: Yes, that's exactly what I mean, thanks, Ally. I am trying to decide when to start treatment and which drug company produces the best treatment for me. I am getting so close, I read all and re-read all.. I am as confused as I was back in September, LOL.. Sheena <4thMoongmail> wrote: Schering treatment? Is that the name of the company? I get my meds directly from the VA. I looked at the box and the company the Pegasys comes from is Roche. Is that what you mean? Forgive me for not understanding the question... Ally On 1/30/07, Sheena <mom4possums2002 > wrote: My GI doctor is rarely in his office and has never returned a phone call. I"m going to talk this all over with him on the 6th, can only wait and see, but I do suspect this is why his success rate is so low.. Are you on Schering treatment? Sheena <4thMoongmail> wrote: Hmm, I understand. I only saw my doctor once since I started this 11 months ago. We stay in contact by phone and email. If I have any questions or concerns or want to know the results of my blood test, I just email her and she gets right back to me. Does your doctor have an email address that you can contact him at? Or is he not open to communication at all? On 1/30/07, Sheena <mom4possums2002 > wrote: There's where my problem lies, with a a doctor that is not ever available, and I can't imagine going 3 months (or more) at a time with no appointment. My Primary says his hands are tied, the GI has to handle treatment. It would seem things could get very out of hand if let go too long.. Sheena <4thMoongmail> wrote: I think it depends on your doctors discretion. For me, I had tests every other week for the first 6 weeks then once a month there after. I will have them once a month till the end of treatment then every 6 months to follow up. Ally On 1/30/07, Sheena <mom4possums2002 > wrote: It was my understanding there should be weekly blood work once treatment is started? Sheena SHARON CROSBY <csharonxoxomsn> wrote: I haven't had any blood work yet, so don't know what that will be. I don't feel off in any way, tho. Sharon Re: Sharon That seems to be all that I can manage, any more and my sodium goes way low, too.. SHARON CROSBY <csharonxoxomsn> wrote: Not the gallon I should, but steady drinking all day. Probably 4 or so 16 oz bottles a day. Any questions? Get answers on any topic at Answers. Try it now. Want to start your own business? Learn how on Small Business. Don't be flakey. Get for Mobile and always stay connected to friends. Have a burning question? Go to Answers and get answers from real people who know. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 when your treatment is done do you go back or better to how you felt before treatment?or do u clear and feel worse.i dont want to miss the summer with my son. <4thMoon@...> wrote: I didn't realize you could choose which company to use. I am rather stuck with whatever the VA uses. The treatment seems to be working though, whatever the brand, because I am undetectable so am happy for that. The one big difference about the VA is that they don't use procrit, I am taking something called Aranesp which is very similar but obviously has side effects that aren't listed for procrit like for me, when I started this, I had a severely increased appetite and gained weight, so I really have to watch it now. It is hard because I am hungry all the time. The interferon never affected my appetite to begin with. Guess I'm the odd one out, lol. Ally On 1/31/07, Sheena <mom4possums2002 > wrote: Yes, that's exactly what I mean, thanks, Ally. I am trying to decide when to start treatment and which drug company produces the best treatment for me. I am getting so close, I read all and re-read all.. I am as confused as I was back in September, LOL.. Sheena <4thMoongmail> wrote: Schering treatment? Is that the name of the company? I get my meds directly from the VA. I looked at the box and the company the Pegasys comes from is Roche. Is that what you mean? Forgive me for not understanding the question... Ally On 1/30/07, Sheena <mom4possums2002 > wrote: My GI doctor is rarely in his office and has never returned a phone call. I"m going to talk this all over with him on the 6th, can only wait and see, but I do suspect this is why his success rate is so low.. Are you on Schering treatment? Sheena <4thMoongmail> wrote: Hmm, I understand. I only saw my doctor once since I started this 11 months ago. We stay in contact by phone and email. If I have any questions or concerns or want to know the results of my blood test, I just email her and she gets right back to me. Does your doctor have an email address that you can contact him at? Or is he not open to communication at all? On 1/30/07, Sheena <mom4possums2002 > wrote: There's where my problem lies, with a a doctor that is not ever available, and I can't imagine going 3 months (or more) at a time with no appointment. My Primary says his hands are tied, the GI has to handle treatment. It would seem things could get very out of hand if let go too long.. Sheena <4thMoongmail> wrote: I think it depends on your doctors discretion. For me, I had tests every other week for the first 6 weeks then once a month there after. I will have them once a month till the end of treatment then every 6 months to follow up. Ally On 1/30/07, Sheena <mom4possums2002 > wrote: It was my understanding there should be weekly blood work once treatment is started? Sheena SHARON CROSBY <csharonxoxomsn> wrote: I haven't had any blood work yet, so don't know what that will be. I don't feel off in any way, tho. Sharon Re: Sharon That seems to be all that I can manage, any more and my sodium goes way low, too.. SHARON CROSBY <csharonxoxomsn> wrote: Not the gallon I should, but steady drinking all day. Probably 4 or so 16 oz bottles a day. Any questions? Get answers on any topic at Answers. Try it now. Want to start your own business? Learn how on Small Business. Don't be flakey. Get for Mobile and always stay connected to friends. Have a burning question? Go to Answers and get answers from real people who know. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 I know I will feel much better once treatment is done, not worse, that is for sure. I had no energy before I started treatment, was tired a lot of the time. After I cleared, I got more energy back despite still being on treatment. I am looking forward to finishing and seeing just how I feel afterward. One thing is for sure, I will never regret doing treatment. I feel like this is a worthy investment to live a longer and higher quality life. I know you feel like you will lose the summer with your son but you'd be surprised at how people will rally around you to help you through. Plus, you will also be making an investment into living longer and therefore having more time with your son overall. Ally On 1/31/07, Hillbilly Tim <knoxweb1@...> wrote: when your treatment is done do you go back or better to how you felt before treatment?or do u clear and feel worse.i dont want to miss the summer with my son. <4thMoon@... > wrote: I didn't realize you could choose which company to use. I am rather stuck with whatever the VA uses. The treatment seems to be working though, whatever the brand, because I am undetectable so am happy for that. The one big difference about the VA is that they don't use procrit, I am taking something called Aranesp which is very similar but obviously has side effects that aren't listed for procrit like for me, when I started this, I had a severely increased appetite and gained weight, so I really have to watch it now. It is hard because I am hungry all the time. The interferon never affected my appetite to begin with. Guess I'm the odd one out, lol. Ally On 1/31/07, Sheena <mom4possums2002@... > wrote: Yes, that's exactly what I mean, thanks, Ally. I am trying to decide when to start treatment and which drug company produces the best treatment for me. I am getting so close, I read all and re-read all.. I am as confused as I was back in September, LOL.. Sheena <4thMoon@...> wrote: Schering treatment? Is that the name of the company? I get my meds directly from the VA. I looked at the box and the company the Pegasys comes from is Roche. Is that what you mean? Forgive me for not understanding the question... Ally On 1/30/07, Sheena <mom4possums2002@... > wrote: My GI doctor is rarely in his office and has never returned a phone call. I " m going to talk this all over with him on the 6th, can only wait and see, but I do suspect this is why his success rate is so low.. Are you on Schering treatment? Sheena <4thMoon@...> wrote: Hmm, I understand. I only saw my doctor once since I started this 11 months ago. We stay in contact by phone and email. If I have any questions or concerns or want to know the results of my blood test, I just email her and she gets right back to me. Does your doctor have an email address that you can contact him at? Or is he not open to communication at all? On 1/30/07, Sheena <mom4possums2002@... > wrote: There's where my problem lies, with a a doctor that is not ever available, and I can't imagine going 3 months (or more) at a time with no appointment. My Primary says his hands are tied, the GI has to handle treatment. It would seem things could get very out of hand if let go too long.. Sheena <4thMoon@...> wrote: I think it depends on your doctors discretion. For me, I had tests every other week for the first 6 weeks then once a month there after. I will have them once a month till the end of treatment then every 6 months to follow up. Ally On 1/30/07, Sheena <mom4possums2002@... > wrote: It was my understanding there should be weekly blood work once treatment is started? Sheena SHARON CROSBY <csharonxoxomsn> wrote: I haven't had any blood work yet, so don't know what that will be. I don't feel off in any way, tho. Sharon Re: Sharon That seems to be all that I can manage, any more and my sodium goes way low, too.. SHARON CROSBY <csharonxoxo@...> wrote: Not the gallon I should, but steady drinking all day. Probably 4 or so 16 oz bottles a day. Any questions? Get answers on any topic at Answers. Try it now. Want to start your own business? Learn how on Small Business. Don't be flakey. Get for Mobile and always stay connected to friends. Have a burning question? Go to Answers and get answers from real people who know. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 I know I will feel much better once treatment is done, not worse, that is for sure. I had no energy before I started treatment, was tired a lot of the time. After I cleared, I got more energy back despite still being on treatment. I am looking forward to finishing and seeing just how I feel afterward. One thing is for sure, I will never regret doing treatment. I feel like this is a worthy investment to live a longer and higher quality life. I know you feel like you will lose the summer with your son but you'd be surprised at how people will rally around you to help you through. Plus, you will also be making an investment into living longer and therefore having more time with your son overall. Ally On 1/31/07, Hillbilly Tim <knoxweb1@...> wrote: when your treatment is done do you go back or better to how you felt before treatment?or do u clear and feel worse.i dont want to miss the summer with my son. <4thMoon@... > wrote: I didn't realize you could choose which company to use. I am rather stuck with whatever the VA uses. The treatment seems to be working though, whatever the brand, because I am undetectable so am happy for that. The one big difference about the VA is that they don't use procrit, I am taking something called Aranesp which is very similar but obviously has side effects that aren't listed for procrit like for me, when I started this, I had a severely increased appetite and gained weight, so I really have to watch it now. It is hard because I am hungry all the time. The interferon never affected my appetite to begin with. Guess I'm the odd one out, lol. Ally On 1/31/07, Sheena <mom4possums2002@... > wrote: Yes, that's exactly what I mean, thanks, Ally. I am trying to decide when to start treatment and which drug company produces the best treatment for me. I am getting so close, I read all and re-read all.. I am as confused as I was back in September, LOL.. Sheena <4thMoon@...> wrote: Schering treatment? Is that the name of the company? I get my meds directly from the VA. I looked at the box and the company the Pegasys comes from is Roche. Is that what you mean? Forgive me for not understanding the question... Ally On 1/30/07, Sheena <mom4possums2002@... > wrote: My GI doctor is rarely in his office and has never returned a phone call. I " m going to talk this all over with him on the 6th, can only wait and see, but I do suspect this is why his success rate is so low.. Are you on Schering treatment? Sheena <4thMoon@...> wrote: Hmm, I understand. I only saw my doctor once since I started this 11 months ago. We stay in contact by phone and email. If I have any questions or concerns or want to know the results of my blood test, I just email her and she gets right back to me. Does your doctor have an email address that you can contact him at? Or is he not open to communication at all? On 1/30/07, Sheena <mom4possums2002@... > wrote: There's where my problem lies, with a a doctor that is not ever available, and I can't imagine going 3 months (or more) at a time with no appointment. My Primary says his hands are tied, the GI has to handle treatment. It would seem things could get very out of hand if let go too long.. Sheena <4thMoon@...> wrote: I think it depends on your doctors discretion. For me, I had tests every other week for the first 6 weeks then once a month there after. I will have them once a month till the end of treatment then every 6 months to follow up. Ally On 1/30/07, Sheena <mom4possums2002@... > wrote: It was my understanding there should be weekly blood work once treatment is started? Sheena SHARON CROSBY <csharonxoxomsn> wrote: I haven't had any blood work yet, so don't know what that will be. I don't feel off in any way, tho. Sharon Re: Sharon That seems to be all that I can manage, any more and my sodium goes way low, too.. SHARON CROSBY <csharonxoxo@...> wrote: Not the gallon I should, but steady drinking all day. Probably 4 or so 16 oz bottles a day. Any questions? Get answers on any topic at Answers. Try it now. Want to start your own business? Learn how on Small Business. Don't be flakey. Get for Mobile and always stay connected to friends. Have a burning question? Go to Answers and get answers from real people who know. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 The first time I treated I felt better than I had in years Re: Sharon That seems to be all that I can manage, any more and my sodium goes way low, too.. SHARON CROSBY <csharonxoxomsn> wrote: Not the gallon I should, but steady drinking all day. Probably 4 or so 16 oz bottles a day. Any questions? Get answers on any topic at Answers. Try it now. Want to start your own business? Learn how on Small Business. Don't be flakey. Get for Mobile and always stay connected to friends. Have a burning question? Go to Answers and get answers from real people who know. Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Anyone out there had success using " oral antibiotics " (non-intravenous) for late-stage neurological symptoms? Im on my third month now of combination oral antibiotics for Lyme, babesia, and bartonella and I haven't seen any improvement yet. Any info/suggestions appreciated, Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 stick with it, my llmd says it usually takes about three years of antibiotics to clear lyme and the coinfections, and healing of the tissues and brain can take a while after that. good nutritional supplements are important From: chrishuff73 <chrishuff73@...> Subject: [ ] Treatment Question Date: Thursday, March 26, 2009, 3:20 PM Anyone out there had success using " oral antibiotics " (non-intravenous) for late-stage neurological symptoms? Im on my third month now of combination oral antibiotics for Lyme, babesia, and bartonella and I haven't seen any improvement yet. Any info/suggestions appreciated, Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 My LLMD says that there's no empirical evidence that either orals or IVs are more effective than the other. According to him, the main difference appears to be as much a matter of medical culture as anything else: east coast doctors tend to prefer IVs, and west coast docs will go for orals. And they seem to get about the same results either way, so far as anyone knows. That said: I'm having a great experience on oral abx. But if I'm still doing this three years from now without getting to a real cure, I'll be wanting to have a talk about trying a course of IV abx -- just to make sure I've shaken all the trees. Sara On Mar 26, 2009, at 7:45 PM, Donk wrote: > Hi - > I was terrified when my insurance company stopped covering my Rocephin > IV after only 6 weeks. It seemed like it was just beginning to start > to > make me feel a little better. But my LLMD told me he could replace > the > IV with a combo of oral pills and he put me on lots of different > (strong) Anti-biotics plus some others like Plaquenil for Babesia. I > herxed for the first 4 or 5 days, but then have been " slowly " feeling > better for the past 2 months. I'm about 85% back to normal now. > But it > is a " very " slow process, with occasionally feeling worse for a day > or 2 > (herxing I guess), but then steadily feeling better and better over > time. So, yeah, for me at least, the orals worked better than the IV. > Don > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hi - I was terrified when my insurance company stopped covering my Rocephin IV after only 6 weeks. It seemed like it was just beginning to start to make me feel a little better. But my LLMD told me he could replace the IV with a combo of oral pills and he put me on lots of different (strong) Anti-biotics plus some others like Plaquenil for Babesia. I herxed for the first 4 or 5 days, but then have been " slowly " feeling better for the past 2 months. I'm about 85% back to normal now. But it is a " very " slow process, with occasionally feeling worse for a day or 2 (herxing I guess), but then steadily feeling better and better over time. So, yeah, for me at least, the orals worked better than the IV. Don chrishuff73 wrote: > Anyone out there had success using " oral antibiotics " (non-intravenous) for late-stage neurological symptoms? Im on my third month now of combination oral antibiotics for Lyme, babesia, and bartonella and I haven't seen any improvement yet. Any info/suggestions appreciated, Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 My LLMD has me on oral antibiotics; I have been on them since last Sept for lyme, bartonella and babesia. I am slowly getting better.My sleep/fatigue is more normalized and that is big for me. Also, I had severe neurological symptoms (stabbing pains, burning & numbness of my feet and legs, burning spots on my skin, brain fog), but these symptoms were most helped, and helped immediately, by the glutathione infusions that my LLMD ordered for me. The glutathione is the body's antioxidant and it helps to lessen the impact of the toxins and/or immune reaction that the body has to lyme. Now I nebulize glutathione twice a day while I wait for the much longer process of the antibiotics to help. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Better take a boatload of probiotics too. The last thing you want is to add Cdiff to your medical disasters! Pam T S wrote: > > stick with it, my llmd says it usually takes about three years of > antibiotics to clear lyme and the coinfections, and healing of the > tissues and brain can take a while after that. good nutritional > supplements are important > > > > From: chrishuff73 <chrishuff73 > <mailto:chrishuff73%40>> > Subject: [ ] Treatment Question > @group s.com <mailto: %40> > Date: Thursday, March 26, 2009, 3:20 PM > > Anyone out there had success using " oral antibiotics " > (non-intravenous) for late-stage neurological symptoms? Im on my third > month now of combination oral antibiotics for Lyme, babesia, and > bartonella and I haven't seen any improvement yet. Any > info/suggestions appreciated, Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 My LLMD told me it could take up to six months or more for neurological symptoms to improve. So hang in there. I'm getting weekly Bicillin shots and am about to start oral Cipro, as well. This takes time. (Take a deeeep breath.) Take care, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 I have been on oral abx for 3 1/2 years. Before I started, had such a bad neurological problem with my left leg that I was using a cane and very close to needing a wheelchair. The antibiotics that I took started working very quickly-only a matter of days. Now, I only limp when I am very tired or having a herx. It is incredible how much better I am. I still have weakness with my left leg and arm, but nothing like it used to be. After you get the babesia and bartonella out of the way, you will be surprised at the difference. Don't give up, everyone reacts differently and in varying time frames. > > Anyone out there had success using " oral antibiotics " (non-intravenous) for late-stage neurological symptoms? Im on my third month now of combination oral antibiotics for Lyme, babesia, and bartonella and I haven't seen any improvement yet. Any info/suggestions appreciated, Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 I'm on my 6 month of oral triple antibiotic treatment. I am just recently starting to notice improvement, so hang in there. It will get better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 I have been on oral now going on about 6 months - when I think back my worst months into treatment were 3 & 4 - but now this sixth month has finally brought some good days - miricle in itself because I didnt have any for at least 10 years - I have had lyme now about 25 years so please hang in there and dont give up on the orals!! The only other thing I am doing becides the orals is the supplimentation - I work with a lady who tests my body and then I only take what my body needs - not everybody needs everything that is on the suppliment list - in fact you body could change every month and need different things - this tests my body and I only take what my body needs - my three daughters also do this testing and take the suppliments only they need - this is orals have been changing my life as befor this I use to take tons of suppliments that never helped but because they were on the list of must take I threw allot of money out the window (we all do on uneeded suppliments)now my body gets exactly what my body needs and nothing else so it can heal what it needs - email me directly if you want more info - dkbmama@... Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Thanks for all of the responses, Ill hang in there Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.