Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi a, Yes I was on Zithromax for several months about 10 months ago and it turned on me too. Or I should say my body just said no. My body seems to be saying no to a lot of things these days. Here's a good one. I can't eat bell peppers since a few months ago. Break out in hives. And on it goes. It's like the chicken and egg thing. Am I cascading into sensitivities more and more? After 30 years these are all so new as symptoms go it's startling me. And it all kind of started with the ABX. Or did it? I just can't say. I've never had an allergy in my life so this is very confusing. I don't know how I'm going to deal with anything if I can't take the proper antidote. For a while I was doing EDTA for lead and the last time I did that I broke out in hives. So I guess that's all I get to do of that for a while. The Yasko thing sounds good and I did see an orthomolecular doc and had lots of genetic stuff done and he put me on a ton of supplements, but I can't take supplements anymore so I don't see how I could do Dr. Yasko's protocol. I think I have to get to the bottom of this allergic reaction thing. If anyone has any advice on how to do that I would appreciate it. Thanks for the help, a. Edy pjeanneus <pj7@...> wrote: Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Edy and a, This is another potential P450 enzyme issue. Most of the major antibiotics, including erythromycin (Zithromax is part of this family), are listed on the CYP3A4 enzyme list Rich sent me, as well as another list he also sent. Which suggests that these common abx require a highly-functioning set of liver enzymes to digest. It's possible that we are low enough in enzymes that these abx are toxic at " normal " doses. Our bodies don't clear them quickly, so one or two doses will quickly accumulate to a very high level in the tissues -- and stay there for days while the body struggles to clear them. If we keep taking those recommended three-a-day doses, the level continues to rise, until we're operating at dangerously toxic levels, while our bodies break down in the fight to clear the excess. The upside of this is that these same abx may be tolerable -- and effective -- at a fraction of the " normal " dose. If you're body's not clearing them, you might build up to a therapeutic dose even if you're only taking a quarter or a fifth of what the doctor would otherwise give you. In any event, a Genovations detox panel would go a long way toward explaining what's going on here, and perhaps point to other options that are more likely to succeed. Sara On Aug 10, 2006, at 12:05 PM, Edy Rayfield wrote: > Hi a, > Yes I was on Zithromax for several months about 10 months ago and > it turned on me too. Or I should say my body just said no. My body > seems to be saying no to a lot of things these days. Here's a good > one. I can't eat bell peppers since a few months ago. Break out > in hives. And on it goes. It's like the chicken and egg thing. > Am I cascading into sensitivities more and more? After 30 years > these are all so new as symptoms go it's startling me. And it all > kind of started with the ABX. Or did it? I just can't say. I've > never had an allergy in my life so this is very confusing. > I don't know how I'm going to deal with anything if I can't take > the proper antidote. For a while I was doing EDTA for lead and the > last time I did that I broke out in hives. So I guess that's all I > get to do of that for a while. > The Yasko thing sounds good and I did see an orthomolecular doc > and had lots of genetic stuff done and he put me on a ton of > supplements, but I can't take supplements anymore so I don't see > how I could do Dr. Yasko's protocol. I think I have to get to the > bottom of this allergic reaction thing. If anyone has any advice > on how to do that I would appreciate it. > Thanks for the help, a. Edy > > pjeanneus <pj7@...> wrote: > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > >> Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 HI Sara, I also have this detox mutation. Just this morning I was looking for a list of herbs and drugs that are difficult for me to clear. I hope as we move on, we will be able to locate such lists, so we know to steer clear of these items or at least know to be careful. Since I have both the detox profile and the SNP profile back I can see that trying to get well without these tools would be like drving down a road, with the car running, roadblocks in the way and without my headlights on!!! In effect, driving blind. Janet Mercuria <mercuria@...> wrote: Edy and a, This is another potential P450 enzyme issue. Most of the major antibiotics, including erythromycin (Zithromax is part of this family), are listed on the CYP3A4 enzyme list Rich sent me, as well as another list he also sent. Which suggests that these common abx require a highly-functioning set of liver enzymes to digest. It's possible that we are low enough in enzymes that these abx are toxic at " normal " doses. Our bodies don't clear them quickly, so one or two doses will quickly accumulate to a very high level in the tissues -- and stay there for days while the body struggles to clear them. If we keep taking those recommended three-a-day doses, the level continues to rise, until we're operating at dangerously toxic levels, while our bodies break down in the fight to clear the excess. The upside of this is that these same abx may be tolerable -- and effective -- at a fraction of the " normal " dose. If you're body's not clearing them, you might build up to a therapeutic dose even if you're only taking a quarter or a fifth of what the doctor would otherwise give you. In any event, a Genovations detox panel would go a long way toward explaining what's going on here, and perhaps point to other options that are more likely to succeed. Sara On Aug 10, 2006, at 12:05 PM, Edy Rayfield wrote: > Hi a, > Yes I was on Zithromax for several months about 10 months ago and > it turned on me too. Or I should say my body just said no. My body > seems to be saying no to a lot of things these days. Here's a good > one. I can't eat bell peppers since a few months ago. Break out > in hives. And on it goes. It's like the chicken and egg thing. > Am I cascading into sensitivities more and more? After 30 years > these are all so new as symptoms go it's startling me. And it all > kind of started with the ABX. Or did it? I just can't say. I've > never had an allergy in my life so this is very confusing. > I don't know how I'm going to deal with anything if I can't take > the proper antidote. For a while I was doing EDTA for lead and the > last time I did that I broke out in hives. So I guess that's all I > get to do of that for a while. > The Yasko thing sounds good and I did see an orthomolecular doc > and had lots of genetic stuff done and he put me on a ton of > supplements, but I can't take supplements anymore so I don't see > how I could do Dr. Yasko's protocol. I think I have to get to the > bottom of this allergic reaction thing. If anyone has any advice > on how to do that I would appreciate it. > Thanks for the help, a. Edy > > pjeanneus <pj7@...> wrote: > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > >> Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Those are very good ideas. I can't remember who now, but I saved the post, a few days ago gave the address of a lab that does ABX testing to tell you what you are reacting to? I think I have that right. It's in my favorites so I can go to the page. What you say makes sense as I had a bicillin shot about 6 weeks ago which is LA and it literally took over a month to clear it. I was in ABX hell. Had to have a friend stay with me in case it got too bad. I can't believe some people get these twice a week!! I've had the genetic testing done to a degree and I am a " Non Methylator " . Jill has some very good thoughts on that, but of course it would require supplementation which I can't do right now. Thanks for the input. I'm living in quandaryville, Edy Mercuria <mercuria@...> wrote: Edy and a, This is another potential P450 enzyme issue. Most of the major antibiotics, including erythromycin (Zithromax is part of this family), are listed on the CYP3A4 enzyme list Rich sent me, as well as another list he also sent. Which suggests that these common abx require a highly-functioning set of liver enzymes to digest. It's possible that we are low enough in enzymes that these abx are toxic at " normal " doses. Our bodies don't clear them quickly, so one or two doses will quickly accumulate to a very high level in the tissues -- and stay there for days while the body struggles to clear them. If we keep taking those recommended three-a-day doses, the level continues to rise, until we're operating at dangerously toxic levels, while our bodies break down in the fight to clear the excess. The upside of this is that these same abx may be tolerable -- and effective -- at a fraction of the " normal " dose. If you're body's not clearing them, you might build up to a therapeutic dose even if you're only taking a quarter or a fifth of what the doctor would otherwise give you. In any event, a Genovations detox panel would go a long way toward explaining what's going on here, and perhaps point to other options that are more likely to succeed. Sara On Aug 10, 2006, at 12:05 PM, Edy Rayfield wrote: > Hi a, > Yes I was on Zithromax for several months about 10 months ago and > it turned on me too. Or I should say my body just said no. My body > seems to be saying no to a lot of things these days. Here's a good > one. I can't eat bell peppers since a few months ago. Break out > in hives. And on it goes. It's like the chicken and egg thing. > Am I cascading into sensitivities more and more? After 30 years > these are all so new as symptoms go it's startling me. And it all > kind of started with the ABX. Or did it? I just can't say. I've > never had an allergy in my life so this is very confusing. > I don't know how I'm going to deal with anything if I can't take > the proper antidote. For a while I was doing EDTA for lead and the > last time I did that I broke out in hives. So I guess that's all I > get to do of that for a while. > The Yasko thing sounds good and I did see an orthomolecular doc > and had lots of genetic stuff done and he put me on a ton of > supplements, but I can't take supplements anymore so I don't see > how I could do Dr. Yasko's protocol. I think I have to get to the > bottom of this allergic reaction thing. If anyone has any advice > on how to do that I would appreciate it. > Thanks for the help, a. Edy > > pjeanneus <pj7@...> wrote: > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > >> Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi Janet, Funny you should use the auto analogy. I tell folks not only am I not in the fast lane, but I'm on the frontage road with the hood up, motor missing and on blocks, no tires. But by golly the shell is there for some potential..... But boy does that shell ITCH! Best to you, Edy Janet s <jgstev716@...> wrote: HI Sara, I also have this detox mutation. Just this morning I was looking for a list of herbs and drugs that are difficult for me to clear. I hope as we move on, we will be able to locate such lists, so we know to steer clear of these items or at least know to be careful. Since I have both the detox profile and the SNP profile back I can see that trying to get well without these tools would be like drving down a road, with the car running, roadblocks in the way and without my headlights on!!! In effect, driving blind. Janet Mercuria <mercuria@...> wrote: Edy and a, This is another potential P450 enzyme issue. Most of the major antibiotics, including erythromycin (Zithromax is part of this family), are listed on the CYP3A4 enzyme list Rich sent me, as well as another list he also sent. Which suggests that these common abx require a highly-functioning set of liver enzymes to digest. It's possible that we are low enough in enzymes that these abx are toxic at " normal " doses. Our bodies don't clear them quickly, so one or two doses will quickly accumulate to a very high level in the tissues -- and stay there for days while the body struggles to clear them. If we keep taking those recommended three-a-day doses, the level continues to rise, until we're operating at dangerously toxic levels, while our bodies break down in the fight to clear the excess. The upside of this is that these same abx may be tolerable -- and effective -- at a fraction of the " normal " dose. If you're body's not clearing them, you might build up to a therapeutic dose even if you're only taking a quarter or a fifth of what the doctor would otherwise give you. In any event, a Genovations detox panel would go a long way toward explaining what's going on here, and perhaps point to other options that are more likely to succeed. Sara On Aug 10, 2006, at 12:05 PM, Edy Rayfield wrote: > Hi a, > Yes I was on Zithromax for several months about 10 months ago and > it turned on me too. Or I should say my body just said no. My body > seems to be saying no to a lot of things these days. Here's a good > one. I can't eat bell peppers since a few months ago. Break out > in hives. And on it goes. It's like the chicken and egg thing. > Am I cascading into sensitivities more and more? After 30 years > these are all so new as symptoms go it's startling me. And it all > kind of started with the ABX. Or did it? I just can't say. I've > never had an allergy in my life so this is very confusing. > I don't know how I'm going to deal with anything if I can't take > the proper antidote. For a while I was doing EDTA for lead and the > last time I did that I broke out in hives. So I guess that's all I > get to do of that for a while. > The Yasko thing sounds good and I did see an orthomolecular doc > and had lots of genetic stuff done and he put me on a ton of > supplements, but I can't take supplements anymore so I don't see > how I could do Dr. Yasko's protocol. I think I have to get to the > bottom of this allergic reaction thing. If anyone has any advice > on how to do that I would appreciate it. > Thanks for the help, a. Edy > > pjeanneus <pj7@...> wrote: > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > >> Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Edy, a guy named Stan Kurtz is pioneering nasal methylb12. Couuld you take nasal sprays? Perhaps your nutrients can be compounded that way. I believe they are effective. Just a thought. > > Edy, > > I am so sorry your situation is this scary. I have had that sense of > > futility a few times in the course of my disease over 11 years. You > > try something and it makes you worse. In my case this was exactly what > > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > > and then Mepron. By the time I finished a few months of this I could > > barely walk, and I was getting anxiety attacks in the middle of the > > night for no reason. > > > > Have you ever tried or had a bad reaction to either minocycline or > > Zithromax? I know how terrifying it is to take an antibiotic when you > > have reacted to some. So I am wondering if you can take either of > > these? I believe there is good research that these are most effective > > for Lyme because they penetrate the brain and CNS while still being > > quite safe antibiotics - especially Zithromax is very safe. Some > > people such as myself and others have even found that their yeast and > > digestive problems cleared up on Zithromax. > > > > a > > > >> Hi a, The point I was making is that I don't think the > > mycoplasma was causing problems for me. I do have Lyme and maybe it's > > causing a lot, but now I'm too sensitive to ABX to do them. I've > > gotten some info on how to desensitize, but it sounds dangerous and > > has to be done in a hospital setting. All I want to do is kill the > > pathagens. If I'm still not better, then on to the biotoxins, then > > on to the metals. My road is so long I'm almost paralyzed with > > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 HI Edy, I know your having a tough time. I do hope things get better for you. Always wishing you the very best! Janet Edy Rayfield <edyrayfield@...> wrote: Hi Janet, Funny you should use the auto analogy. I tell folks not only am I not in the fast lane, but I'm on the frontage road with the hood up, motor missing and on blocks, no tires. But by golly the shell is there for some potential..... But boy does that shell ITCH! Best to you, Edy Janet s <jgstev716@...> wrote: HI Sara, I also have this detox mutation. Just this morning I was looking for a list of herbs and drugs that are difficult for me to clear. I hope as we move on, we will be able to locate such lists, so we know to steer clear of these items or at least know to be careful. Since I have both the detox profile and the SNP profile back I can see that trying to get well without these tools would be like drving down a road, with the car running, roadblocks in the way and without my headlights on!!! In effect, driving blind. Janet Mercuria <mercuria@...> wrote: Edy and a, This is another potential P450 enzyme issue. Most of the major antibiotics, including erythromycin (Zithromax is part of this family), are listed on the CYP3A4 enzyme list Rich sent me, as well as another list he also sent. Which suggests that these common abx require a highly-functioning set of liver enzymes to digest. It's possible that we are low enough in enzymes that these abx are toxic at " normal " doses. Our bodies don't clear them quickly, so one or two doses will quickly accumulate to a very high level in the tissues -- and stay there for days while the body struggles to clear them. If we keep taking those recommended three-a-day doses, the level continues to rise, until we're operating at dangerously toxic levels, while our bodies break down in the fight to clear the excess. The upside of this is that these same abx may be tolerable -- and effective -- at a fraction of the " normal " dose. If you're body's not clearing them, you might build up to a therapeutic dose even if you're only taking a quarter or a fifth of what the doctor would otherwise give you. In any event, a Genovations detox panel would go a long way toward explaining what's going on here, and perhaps point to other options that are more likely to succeed. Sara On Aug 10, 2006, at 12:05 PM, Edy Rayfield wrote: > Hi a, > Yes I was on Zithromax for several months about 10 months ago and > it turned on me too. Or I should say my body just said no. My body > seems to be saying no to a lot of things these days. Here's a good > one. I can't eat bell peppers since a few months ago. Break out > in hives. And on it goes. It's like the chicken and egg thing. > Am I cascading into sensitivities more and more? After 30 years > these are all so new as symptoms go it's startling me. And it all > kind of started with the ABX. Or did it? I just can't say. I've > never had an allergy in my life so this is very confusing. > I don't know how I'm going to deal with anything if I can't take > the proper antidote. For a while I was doing EDTA for lead and the > last time I did that I broke out in hives. So I guess that's all I > get to do of that for a while. > The Yasko thing sounds good and I did see an orthomolecular doc > and had lots of genetic stuff done and he put me on a ton of > supplements, but I can't take supplements anymore so I don't see > how I could do Dr. Yasko's protocol. I think I have to get to the > bottom of this allergic reaction thing. If anyone has any advice > on how to do that I would appreciate it. > Thanks for the help, a. Edy > > pjeanneus <pj7@...> wrote: > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > >> Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Can you still use herbals- as teas? Can you tolerate massage? Not even vit C? What makes you feel a little better? Do it more. The very sickest I have been with this disease happened after I took a flu shot. It was acute for months, and actually, I never regained all the ground I lost. All I remember was always being in bed, alone.I must've gone out for groceries, but it was really hard to get from the bed to the kitchen to cook 'em. I did absolutely nothing for my condition, I don't believe. I never tried to fix it. I just lay there, and gradually got better. Sometimes doing nothing is best. Or: Try various forms of energy medicine. There, the key is finding the right practioner. Adrienne .. Re: ABX sensitivity Hi a, Yes I was on Zithromax for several months about 10 months ago and it turned on me too. Or I should say my body just said no. My body seems to be saying no to a lot of things these days. Here's a good one. I can't eat bell peppers since a few months ago. Break out in hives. And on it goes. It's like the chicken and egg thing. Am I cascading into sensitivities more and more? After 30 years these are all so new as symptoms go it's startling me. And it all kind of started with the ABX. Or did it? I just can't say. I've never had an allergy in my life so this is very confusing. I don't know how I'm going to deal with anything if I can't take the proper antidote. For a while I was doing EDTA for lead and the last time I did that I broke out in hives. So I guess that's all I get to do of that for a while. The Yasko thing sounds good and I did see an orthomolecular doc and had lots of genetic stuff done and he put me on a ton of supplements, but I can't take supplements anymore so I don't see how I could do Dr. Yasko's protocol. I think I have to get to the bottom of this allergic reaction thing. If anyone has any advice on how to do that I would appreciate it. Thanks for the help, a. Edy pjeanneus <pj7@...> wrote: Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi, Edy. I don't know if you have done allergy testing, but that might be worth considering. Last weekend at the MCS workshop I had a chat with Janet Dauble about this, and I specifically asked her what tests she would recommend (Janet heads up Share, Care and Prayer, which really focuses on MCS, and she has been involved for many years, so I think she knows what she's talking about in this field.) She told me that the RAST test saved her life a few years ago, and she also recommends the -ACT test over the Alcat test for the other-than-Type 1 sensitivities. I also think that getting the Genovations Detoxigenomic panel is a good idea, to find out what issues there are in your detox enzymes. I think it's important to try to deal with this issue sooner rather than later, because over time a person tends to get backed into a corner, as there are fewer and fewer things they can tolerate. Identifying which things to avoid is very important, and these tests will help you do that. Of course, they aren't cheap, but I think they can be really helpful. Rich > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > > > Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Thank you Rich, I will get on this soonest. I have an appointment Monday with my alternative doc so will get these pronto. Cheap? Can you put a price on your health? I've almost got the forms filled out and am gathering tests. Is there a way I can send this snailmail instead of faxing. There's so much. Edy rvankonynen <richvank@...> wrote: Hi, Edy. I don't know if you have done allergy testing, but that might be worth considering. Last weekend at the MCS workshop I had a chat with Janet Dauble about this, and I specifically asked her what tests she would recommend (Janet heads up Share, Care and Prayer, which really focuses on MCS, and she has been involved for many years, so I think she knows what she's talking about in this field.) She told me that the RAST test saved her life a few years ago, and she also recommends the -ACT test over the Alcat test for the other-than-Type 1 sensitivities. I also think that getting the Genovations Detoxigenomic panel is a good idea, to find out what issues there are in your detox enzymes. I think it's important to try to deal with this issue sooner rather than later, because over time a person tends to get backed into a corner, as there are fewer and fewer things they can tolerate. Identifying which things to avoid is very important, and these tests will help you do that. Of course, they aren't cheap, but I think they can be really helpful. Rich > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > > > Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 I had the Genovations Detoxigenomic panal done last year and will send those to you as well. Thanks, Rich rvankonynen <richvank@...> wrote: Hi, Edy. I don't know if you have done allergy testing, but that might be worth considering. Last weekend at the MCS workshop I had a chat with Janet Dauble about this, and I specifically asked her what tests she would recommend (Janet heads up Share, Care and Prayer, which really focuses on MCS, and she has been involved for many years, so I think she knows what she's talking about in this field.) She told me that the RAST test saved her life a few years ago, and she also recommends the -ACT test over the Alcat test for the other-than-Type 1 sensitivities. I also think that getting the Genovations Detoxigenomic panel is a good idea, to find out what issues there are in your detox enzymes. I think it's important to try to deal with this issue sooner rather than later, because over time a person tends to get backed into a corner, as there are fewer and fewer things they can tolerate. Identifying which things to avoid is very important, and these tests will help you do that. Of course, they aren't cheap, but I think they can be really helpful. Rich > Edy, > I am so sorry your situation is this scary. I have had that sense of > futility a few times in the course of my disease over 11 years. You > try something and it makes you worse. In my case this was exactly what > happened when I took quinolones for the Lyme. I took Levaquin, Avelox > and then Mepron. By the time I finished a few months of this I could > barely walk, and I was getting anxiety attacks in the middle of the > night for no reason. > > Have you ever tried or had a bad reaction to either minocycline or > Zithromax? I know how terrifying it is to take an antibiotic when you > have reacted to some. So I am wondering if you can take either of > these? I believe there is good research that these are most effective > for Lyme because they penetrate the brain and CNS while still being > quite safe antibiotics - especially Zithromax is very safe. Some > people such as myself and others have even found that their yeast and > digestive problems cleared up on Zithromax. > > a > > > Hi a, The point I was making is that I don't think the > mycoplasma was causing problems for me. I do have Lyme and maybe it's > causing a lot, but now I'm too sensitive to ABX to do them. I've > gotten some info on how to desensitize, but it sounds dangerous and > has to be done in a hospital setting. All I want to do is kill the > pathagens. If I'm still not better, then on to the biotoxins, then > on to the metals. My road is so long I'm almost paralyzed with > confusion. And I'm so fragile now I don't know what to take or do. Edy > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 You know that's interesting. In all the years I've had this condition I've had years at a time where I couldn't get out of bed and would lay there like you and then gradually for no reason get better. I was taking nothing and eating what I could. On occassion I would crawl to the kitchen open a can of something and eat it right out of the can. Then crawl back to bed. This would go on for months and years. Then over a few months I would eventually come around to about 30 percent energy, just enough to function out of bed a bit. I'm going on 6 years with this crash now, but I can cook, not shop. " Adrienne G. " <duckblossm@...> wrote: Can you still use herbals- as teas? Can you tolerate massage? Not even vit C? What makes you feel a little better? Do it more. The very sickest I have been with this disease happened after I took a flu shot. It was acute for months, and actually, I never regained all the ground I lost. All I remember was always being in bed, alone.I must've gone out for groceries, but it was really hard to get from the bed to the kitchen to cook 'em. I did absolutely nothing for my condition, I don't believe. I never tried to fix it. I just lay there, and gradually got better. Sometimes doing nothing is best. Or: Try various forms of energy medicine. There, the key is finding the right practioner. Adrienne .. Re: ABX sensitivity Hi a, Yes I was on Zithromax for several months about 10 months ago and it turned on me too. Or I should say my body just said no. My body seems to be saying no to a lot of things these days. Here's a good one. I can't eat bell peppers since a few months ago. Break out in hives. And on it goes. It's like the chicken and egg thing. Am I cascading into sensitivities more and more? After 30 years these are all so new as symptoms go it's startling me. And it all kind of started with the ABX. Or did it? I just can't say. I've never had an allergy in my life so this is very confusing. I don't know how I'm going to deal with anything if I can't take the proper antidote. For a while I was doing EDTA for lead and the last time I did that I broke out in hives. So I guess that's all I get to do of that for a while. The Yasko thing sounds good and I did see an orthomolecular doc and had lots of genetic stuff done and he put me on a ton of supplements, but I can't take supplements anymore so I don't see how I could do Dr. Yasko's protocol. I think I have to get to the bottom of this allergic reaction thing. If anyone has any advice on how to do that I would appreciate it. Thanks for the help, a. Edy pjeanneus <pj7@...> wrote: Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Well, Edy, When you get right down to it, it is SO mysterious. Surely some of the time the saying " less is more, " is true. I mean, if you try to force yourself to get well and even more so, without knowing , really, what you are doing, you are using up a lot of scarce, precious energy with no benefit. Rest obviously does not cure our disorder, but I think some of the time it is better than hustling to get well. When you are really sick sometimes just maintaining and not getting worse is the best you can do. That's a conservative approach. Instead of warfare; battle conquer, win, victory/defeat. You know how quiet animals get when they are sick. Sometimes they heal, sometimes they die. Adrienne Re: ABX sensitivity Hi a, Yes I was on Zithromax for several months about 10 months ago and it turned on me too. Or I should say my body just said no. My body seems to be saying no to a lot of things these days. Here's a good one. I can't eat bell peppers since a few months ago. Break out in hives. And on it goes. It's like the chicken and egg thing. Am I cascading into sensitivities more and more? After 30 years these are all so new as symptoms go it's startling me. And it all kind of started with the ABX. Or did it? I just can't say. I've never had an allergy in my life so this is very confusing. I don't know how I'm going to deal with anything if I can't take the proper antidote. For a while I was doing EDTA for lead and the last time I did that I broke out in hives. So I guess that's all I get to do of that for a while. The Yasko thing sounds good and I did see an orthomolecular doc and had lots of genetic stuff done and he put me on a ton of supplements, but I can't take supplements anymore so I don't see how I could do Dr. Yasko's protocol. I think I have to get to the bottom of this allergic reaction thing. If anyone has any advice on how to do that I would appreciate it. Thanks for the help, a. Edy pjeanneus <pj7@...> wrote: Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Hi Adrienne, I know what you mean. Have you seen the book by Levine " A Year to Live " . What if we knew for sure how long we had, what would our choices be? I personally would stop all this searching and be with the people I love tomorrow. But we don't know the future and I would love my future to hold some energized healthy days in it....So the search goes on for now. But in the meantime I rest and rest and rest. " Adrienne G. " <duckblossm@...> wrote: Well, Edy, When you get right down to it, it is SO mysterious. Surely some of the time the saying " less is more, " is true. I mean, if you try to force yourself to get well and even more so, without knowing , really, what you are doing, you are using up a lot of scarce, precious energy with no benefit. Rest obviously does not cure our disorder, but I think some of the time it is better than hustling to get well. When you are really sick sometimes just maintaining and not getting worse is the best you can do. That's a conservative approach. Instead of warfare; battle conquer, win, victory/defeat. You know how quiet animals get when they are sick. Sometimes they heal, sometimes they die. Adrienne Re: ABX sensitivity Hi a, Yes I was on Zithromax for several months about 10 months ago and it turned on me too. Or I should say my body just said no. My body seems to be saying no to a lot of things these days. Here's a good one. I can't eat bell peppers since a few months ago. Break out in hives. And on it goes. It's like the chicken and egg thing. Am I cascading into sensitivities more and more? After 30 years these are all so new as symptoms go it's startling me. And it all kind of started with the ABX. Or did it? I just can't say. I've never had an allergy in my life so this is very confusing. I don't know how I'm going to deal with anything if I can't take the proper antidote. For a while I was doing EDTA for lead and the last time I did that I broke out in hives. So I guess that's all I get to do of that for a while. The Yasko thing sounds good and I did see an orthomolecular doc and had lots of genetic stuff done and he put me on a ton of supplements, but I can't take supplements anymore so I don't see how I could do Dr. Yasko's protocol. I think I have to get to the bottom of this allergic reaction thing. If anyone has any advice on how to do that I would appreciate it. Thanks for the help, a. Edy pjeanneus <pj7@...> wrote: Edy, I am so sorry your situation is this scary. I have had that sense of futility a few times in the course of my disease over 11 years. You try something and it makes you worse. In my case this was exactly what happened when I took quinolones for the Lyme. I took Levaquin, Avelox and then Mepron. By the time I finished a few months of this I could barely walk, and I was getting anxiety attacks in the middle of the night for no reason. Have you ever tried or had a bad reaction to either minocycline or Zithromax? I know how terrifying it is to take an antibiotic when you have reacted to some. So I am wondering if you can take either of these? I believe there is good research that these are most effective for Lyme because they penetrate the brain and CNS while still being quite safe antibiotics - especially Zithromax is very safe. Some people such as myself and others have even found that their yeast and digestive problems cleared up on Zithromax. a > Hi a, The point I was making is that I don't think the mycoplasma was causing problems for me. I do have Lyme and maybe it's causing a lot, but now I'm too sensitive to ABX to do them. I've gotten some info on how to desensitize, but it sounds dangerous and has to be done in a hospital setting. All I want to do is kill the pathagens. If I'm still not better, then on to the biotoxins, then on to the metals. My road is so long I'm almost paralyzed with confusion. And I'm so fragile now I don't know what to take or do. Edy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Hi, Edy. My address is Rich Van Konynenburg 444 Ontario Drive Livermore, CA 94550. Rich > > Thank you Rich, I will get on this soonest. I have an appointment Monday with my alternative doc so will get these pronto. Cheap? Can you put a price on your health? > I've almost got the forms filled out and am gathering tests. Is there a way I can send this snailmail instead of faxing. There's so much. Edy 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.