Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 If you are doing ok with Buhner, I would continue. Be sure to take binders. Smilax is the binder that Buhner recommends; I also take pectasolC, cholestyramine and sometimes charcoal. Anytime you kill the bugs, you need binders to help you clear the debris or else you will 'herx.' My personal bias is that herbs are gentler than ABX. You may be able to tolerate an herbal protocol where abx might be too much too soon and as you say, you crash. My suggestion is to continue with Buhner, do lots of binders and later if you want to add abx then do so. Just my suggestion. Of course, you need to do what feels right to you. And if you are fortunate, in consultation with a good doc. Supporting yourself with good food, supplements, rest, etc as someone else suggested is also important. And good for you for coming here to get ideas and support. I relyed on the interent for SO much for so many years. I was way too sick to get out to get the support and info I needed. This is a blessing to people with limited energy. Best wishes, jo > > HI, > I'm new here and could REALLY use some advice! > > Has anyone had any luck with IVIG? I'm desperate and considering giving it a try - CD57 is 28, I'm hoping this would boost my immune system enough to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now at all and recently started the Buhner protocol - very low level, scared to herx. I've tried oral abx a few times and each time I crash within a couple weeks - can't walk, talk, swallow - I really can't believe I'm still here. > > Crossing my fingers that I can make some progress with Buhner! Any advice you could give me would be great. > Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 I am pretty new here as well, so forgive me, but what are binders?? Can you give me a few examples? Thanks On Sat, Jan 22, 2011 at 10:44 AM, judyjo27 <judyjo44@...> wrote: > > > If you are doing ok with Buhner, I would continue. Be sure to take binders. > Smilax is the binder that Buhner recommends; I also take pectasolC, > cholestyramine and sometimes charcoal. Anytime you kill the bugs, you need > binders to help you clear the debris or else you will 'herx.' > > My personal bias is that herbs are gentler than ABX. You may be able to > tolerate an herbal protocol where abx might be too much too soon and as you > say, you crash. My suggestion is to continue with Buhner, do lots of binders > and later if you want to add abx then do so. > > Just my suggestion. Of course, you need to do what feels right to you. And > if you are fortunate, in consultation with a good doc. > > Supporting yourself with good food, supplements, rest, etc as someone else > suggested is also important. And good for you for coming here to get ideas > and support. I relyed on the interent for SO much for so many years. I was > way too sick to get out to get the support and info I needed. This is a > blessing to people with limited energy. > > Best wishes, jo > > > > > > > HI, > > I'm new here and could REALLY use some advice! > > > > Has anyone had any luck with IVIG? I'm desperate and considering giving > it a try - CD57 is 28, I'm hoping this would boost my immune system enough > to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past > 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now > at all and recently started the Buhner protocol - very low level, scared to > herx. I've tried oral abx a few times and each time I crash within a couple > weeks - can't walk, talk, swallow - I really can't believe I'm still here. > > > > Crossing my fingers that I can make some progress with Buhner! Any advice > you could give me would be great. > > Thank you! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Binders are things that bind and remove toxins from the body. Some pull good things too like minerals and even medications so they need to be taken two hours away from these, plus minerals should be supplemented back in. Binders include activated charcoal, apple pectin, chlorella, french green clay, etc. Cholestyramine is one that needs Rx. There are many others as well. deb > > > > > > HI, > > > I'm new here and could REALLY use some advice! > > > > > > Has anyone had any luck with IVIG? I'm desperate and considering giving > > it a try - CD57 is 28, I'm hoping this would boost my immune system enough > > to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past > > 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now > > at all and recently started the Buhner protocol - very low level, scared to > > herx. I've tried oral abx a few times and each time I crash within a couple > > weeks - can't walk, talk, swallow - I really can't believe I'm still here. > > > > > > Crossing my fingers that I can make some progress with Buhner! Any advice > > you could give me would be great. > > > Thank you! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Deb, Thanks for the info. Have you used any of these? Do you herx from them? My hubby has a paralyzed diaphragm so I am very concerned about his breathing to have him herx too bad, but if the IV meds kill the lyme, then he needs something to get rid of the toxins, doesn't he? Dixie On Sun, Jan 23, 2011 at 9:52 AM, Deb57 <ds@...> wrote: > > > Binders are things that bind and remove toxins from the body. Some pull > good things too like minerals and even medications so they need to be taken > two hours away from these, plus minerals should be supplemented back in. > > Binders include activated charcoal, apple pectin, chlorella, french green > clay, etc. Cholestyramine is one that needs Rx. There are many others as > well. > > deb > > > > > > > > > > > HI, > > > > I'm new here and could REALLY use some advice! > > > > > > > > Has anyone had any luck with IVIG? I'm desperate and considering > giving > > > it a try - CD57 is 28, I'm hoping this would boost my immune system > enough > > > to tolerate antibiotics. Had Lyme over 20 years - living in the ER the > past > > > 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics > right now > > > at all and recently started the Buhner protocol - very low level, > scared to > > > herx. I've tried oral abx a few times and each time I crash within a > couple > > > weeks - can't walk, talk, swallow - I really can't believe I'm still > here. > > > > > > > > Crossing my fingers that I can make some progress with Buhner! Any > advice > > > you could give me would be great. > > > > Thank you! > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Hi Dixie, When you use products to kill the bugs, the debris left behind needs to be processed so it doesn't just hang around in your body and make you feel bad. Many of us with these illnesses, are not able to eliminate these toxins as well as other people so we especially need help. Binders bind to the debris and then it moves out the elimination system (bowels, kidneys). I mentioned the binders I use are cholestyramine (CSM), pectasol, smilax (Buhner recommends this), and sometimes charcoal. There are others but those are the ones I use. Hope that helps. Keep asking questions; that's how we learn. jo > > > > > > > If you are doing ok with Buhner, I would continue. Be sure to take binders. > > Smilax is the binder that Buhner recommends; I also take pectasolC, > > cholestyramine and sometimes charcoal. Anytime you kill the bugs, you need > > binders to help you clear the debris or else you will 'herx.' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Thanks Jo, Going to see the lyme doc on tues, so can't wait to ask him about this. I have only given him samento once per day, up to 4 drops today, but afraid to start the teasel til after we see the doc. I think the binders make alot of sense with his labored breathing so he doesn't herx too much and to into respiratory failure. Thanks for answering. Dixie On Sun, Jan 23, 2011 at 1:16 PM, judyjo27 <judyjo44@...> wrote: > > > Hi Dixie, > > When you use products to kill the bugs, the debris left behind needs to be > processed so it doesn't just hang around in your body and make you feel bad. > Many of us with these illnesses, are not able to eliminate these toxins as > well as other people so we especially need help. Binders bind to the debris > and then it moves out the elimination system (bowels, kidneys). > > I mentioned the binders I use are cholestyramine (CSM), pectasol, smilax > (Buhner recommends this), and sometimes charcoal. There are others but those > are the ones I use. > > Hope that helps. Keep asking questions; that's how we learn. jo > > > > > > > > > > > > > > If you are doing ok with Buhner, I would continue. Be sure to take > binders. > > > Smilax is the binder that Buhner recommends; I also take pectasolC, > > > cholestyramine and sometimes charcoal. Anytime you kill the bugs, you > need > > > binders to help you clear the debris or else you will 'herx.' > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Yes, I have used most of these except the cholestyramine which requires a prescription. There are many ways to detox. Another one is coffee enemas. I have not tried this either but the theory is that bile, which carries toxins from the liver, is reabsorbed from the colon and thus recycled. Coffee enemas stimulate the colon to eject bile and the toxins it contains. A lot of people swear by this but you have to fit it into your lifestyle. Best to do in the morning after the first " bathroom break " so your colon is empty. I rotate taking charcoal, apple pectin, and clay. Someone told me Swanson carries french green clay in capsules which are pretty inexpensive. I bought bulk which is nearly impossible to swallow as it clumps when mixed with water. But it has a lot of minerals as well so it is good for more than just binding. I don't believe any of these cause herxing. They remove toxins, they do not kill bugs. Yes, detox is one leg of the three legged stool. The others are killing and rebuilding through nutritional support. As I mentioned, these binders will pull meds, minerals, etc. so they should be taken away from meds and meals and supplementing back is important. I usually take my binders at bedtime as I don't take supplements then (no sleep aids for me). deb > > > > > > > > > > HI, > > > > > I'm new here and could REALLY use some advice! > > > > > > > > > > Has anyone had any luck with IVIG? I'm desperate and considering > > giving > > > > it a try - CD57 is 28, I'm hoping this would boost my immune system > > enough > > > > to tolerate antibiotics. Had Lyme over 20 years - living in the ER the > > past > > > > 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics > > right now > > > > at all and recently started the Buhner protocol - very low level, > > scared to > > > > herx. I've tried oral abx a few times and each time I crash within a > > couple > > > > weeks - can't walk, talk, swallow - I really can't believe I'm still > > here. > > > > > > > > > > Crossing my fingers that I can make some progress with Buhner! Any > > advice > > > > you could give me would be great. > > > > > Thank you! > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2011 Report Share Posted March 14, 2011 How does Dr. G feel about IVIG? Has anyone done this and been able to get it covered? Our neurologist wants to do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2011 Report Share Posted September 10, 2011 I'm a big believer in IVIG. I was constantly hospitalized with unexplained fevers, chills, and respiratory issues. I've had 4 treatments and haven't been ill since. I haven't experienced any side effects either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2011 Report Share Posted September 10, 2011 I have been getting IVIG since I was diagnosed in 2002 based on very low IgG and constant sinus infections and UTIs. My doctor checks my IgG level monthly and a couple of years ago I graduated to every other month rather than monthly. I was hoping to go for every three soon, but by the end of two months my IgG level is starting to bottom out again. I don't know that it would have an effect on someone with frequent infections, but an acceptable IgG level. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2011 Report Share Posted September 11, 2011 Pat I would be interested in seeing your IgG levels over time. Do you think that might be possible? Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2011 Report Share Posted September 11, 2011 Hi Pat - some questions. 1)How do you get your IgG (by infusion or ?)? 2) How often do you get IgG treatments? And what triggers your getting the IgG? 3) How low is your IgG level before you get an IgG treatment? The IgG reference range is approximately 768-1632 mg/dL. My docs don't usually order IgG treatment until the blood level is below 500 mg/dL and/or the person has repeated infections. Regards - Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2011 Report Share Posted September 11, 2011 For what it is worth - I get my IVIG treatments when I'm below 650. I started out at 5,000 units and now take 50,000 units. I get blood drawn monthly and get an infusion when I drop below 650. Best to all, Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2011 Report Share Posted September 11, 2011 This is a topic that recurs fairly frequently. It is worth noting that the indications for receiving IV IG are being hypogammaglobulinemic and having life threatening infections or recurrent infections. The dosing of IV IG is either every three or four weeks. The treatment is meant to be independent of the actual blood levels of IG. There are no data suggesting dosing when patients level fall below normal. Rick Furman, MD Tom wrote: For what it is worth - I get my IVIG treatments when I'm below 650. I started out at 5,000 units and now take 50,000 units. I get blood drawn monthly and get an infusion when I drop below 650. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 Dr. Furman: How is the diagnosis of hypogammaglobulinemia made if not by blood levels? Is it just by h/o recurrent infections? Thanks, Purnima Dr. Rick Furman wrote: This is a topic that recurs fairly frequently. It is worth noting that the indications for receiving IV IG are being hypogammaglobulinemic and having life threatening infections or recurrent infections. The dosing of IV IG is either every three or four weeks. The treatment is meant to be independent of the actual blood levels of IG. There are no data suggesting dosing when patients level fall below normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 The diagnosis of hypogammaglobulinemia is made by blood levels, but the decision on timing of dosing should not be made based upon levels. Once a patient meets the criteria for IV IG usage, the dosing should occur at the studies intervals. Rick Furman Dr. Purnima wrote: > Dr. Furman: How is the diagnosis of hypogammaglobulinemia > made if not by blood levels? Is it just by h/o recurrent > infections? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 Hello Dr. Purnima, I am severely hypogammaglobulinemic (according to blood levels of Igs), but as I'm not having frequent infections, my doctor is not giving me IVIG. As with a lot of aspects of CLL, treatment decisions are made according to the symptoms rather than the blood levels. Kay Rai Stage 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 From Dr. Hamblin's Blog 2008 " Intravenous immunoglobulin The chief means of improving the immune defect has been the use of intravenous immunoglobulin (ivIg) infusions. It should be remembered that immunoglobulin infusions only contain significant amounts of IgG and will not restore deficiencies of other immunoglobulin classes. The use of ivIg in CLL is controversial [27, 28]. Several clinical trials have demonstrated that it reduces the incidence of mild and moderate bacterial infections but none have shown a decrease in mortality. When the need to regularly attend hospital is taken into consideration, there may be no improvement in quality of life. One study estimated that the cost of one quality adjusted life year was $6 million [29]. IvIg only becomes cost effective if it is better targeted [3]. Our own practice is to confine treatment to patients whose serum IgG is less than 300mg/dL who have had at least two bacterial infections in a 12 month period. We recommend a dose of 250 mg/kg given every four weeks. Arrangements are available for patients to self-administer the immunoglobulin infusions at home. " http://mutated-unmuated.blogspot.com/2008/05/immunideficiency-4.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2011 Report Share Posted September 12, 2011 I have 2 questions; perhaps you can shed some light: 1. Are there any studies or indications as to whether IVIG possibly imrpoves response to Rituxan or any other treatment? In other words, might IVIG contribute to longer or deeper remission? 2. My local doc said my immunoglobulin levels were slightly low, but he would wait for repeated or significant infection before starting IVIG. Given that I am not yet having issues with infections, is there any reason to use IVIG for prevention? Should it be used to prolong response to Rituxan (or other treatments for those people using those as well)? Dr. Rick Furman wrote: /message/15971 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 There are no data regarding the impact of IV IG on rituximab efficacy. Theoretically, one might suspect that IV IG would negatively impact upon the effectiveness of rituximab by either depleting complement or non-specifically binding Fc receptors. This would interfere with rituximab being able to make use of them. Clinically, I suspect there is no impact. Rick Furman, MD Mike Abrams wrote: /message/15974 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Patti - Sorry to not have answered sooner. I got behind on my mail. I get infusions of IVIG (25g) every other month. It was originally every month starting in 2002 when I was diagnosed. I had spent over 5 years with constant sinus infections and UTIs before diagnosis which eventually weren't responding to antibiotics. I then had pneumonia and later that year ended up in the hospital septic due to another UTI. My current doctor does monthly labs including IgG. She has looked at the pattern of highs and lows. A treatment will take me just into the " normal " range and then the counts decline steadily until the next infusion. Usually the bottom is in the 500s. Reading the other posts it's interesting to see the various opinions about the use of IVIG. Pat Patti wrote: /message/15964 Quote Link to comment Share on other sites More sharing options...
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