Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I've put myself on the core Buhner protocol for a month. It has caused an increase in my symptoms, especially fatigue and drowsiness. I had the same problem on IV ABXs and Biaxin (after 8 months on other oral ABXs). How much longer should I try the protocol? My LLMD (founding member of ILADS who does research as well) told me not to take ABXs for Lyme anymore (after he treated me for a year). I was drowsy half the day and still slept all night and I could not gain weight (weighed about 100 lbs). There was an unspoken understanding that the treatment did not work. It's hard to let go of trying something to at least keep yourself from getting worse. Any suggestions? Should I give the Buhner protocol another month? Kim [ ] Re: New in here.request for help- > > as Buhner says in his book that they have 95% success in the treatment. success in this case is 'improvement', NOT cure. Read what he has said about this on the Planet Health pages and elsewhere. The 5% with no success are people who do worse on the protocol. Even someone who sees a very small benefit is counted as 'success'. I don't object to that because if you are very ill, every small improvement is good. I have read elsewhere that about 25% are supposed to be cured completely with Buhner protocol (my guess is that most of these are people who were ill for shorter period, and probably a significant group who did not have Borrelia infection at all), about 50% show good improvement but no full cure (e.g. have to stay on the protocol) and about 25% have little or no improvement or adverse outcome. These success numbers are similar to those from many other treatments (e.g. ABX). Only a few alternative treatments claim close to 100% cure rate (for those who believe in magic, IMHO). E.g. in my country bioresonance practitioners (a bit similar to Rife in the US) claim 100% cure rate from Lyme. Despite this claim, I haven't been able to find ONE example of someone with proven Borrelia infection who was fully cured with this treatment. Often it works like this: the patient gets ten very expensive sessions, and if they don't return after that they are assumed to be 100% cured. It's that easy ... P.S.: I know that a large chunk of the 'ABX cure for Lyme' stories are similar, the docs use the standard treatment and never check the condition of their patients in 1, 2, 5 years. And if they still have problems after a year, it cannot be Lyme - by definition. Even a lot of the official medical research works like that. > Hope all will calm down at least a little so that I can exist normally, or at least like before treatment. Don't get me wrong. You CAN improve a lot, things can calm down. But if you have been ill for 1-2 years (in your case this is not too obvious to me, as most of your earlier symptoms are not necessarily due to Bb or Bart) getting back to your condition before you got infected is a stretch. If only because treatments tend to take years, and during these treatments you age, which statistically introduces new problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 > > I've put myself on the core Buhner protocol for a month. It has caused an increase in my symptoms, especially fatigue and drowsiness. Are you on the full protocol now or just starting to build up? I think you have to be on the full dose for 2 months before you can really tell if it is working. It works much slower than ABX, an increase of symptoms in the first weeks/months seems normal to me. I had good improvement with Buhner herbs for neuro issues within a few weeks (while still building up the dose). But some other problems gradually dissolved over 1-2 years. e.g. I have been severely underweight from the time I got Lyme, which got even worse after using ABX for a year (probably damaged my gut ...). Using Buhner protocol and low gluten diet gradually improved things. I went from +/- 64kg before Lyme (low already for my size), to 55kg after ABX, currently about 61.5 kg. I'm still very skinny and most of the connective tissue under the skin etc. is still missing. It really takes time. My fatigue problems started after a year of Buhner protocol (before that I had very little fatigue problems). Almost 2 years later it's now gradually disappearing. Very difficult to say what is working ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Thanks Knotweed. I've only been on the higher dose (hard to gauge as I'm making decoctions) for about 3 weeks. The good sign is I have finally been able to gain a few pounds (6 1/2 months after ending ABXs). My LLMD said I needed to rebuild my immune system. I did get some benefit from the ABXs. But never got a " remission. " Oddly, I went into complete remission pre-diagnosis for 8 months--after which things went downhill rapidly. I appreciate you sharing your experience. I think I'll stick with the protocol and see what happens over time. About how long were you on the protocol--or are you still on it? > > I've put myself on the core Buhner protocol for a month. It has caused an increase in my symptoms, especially fatigue and drowsiness. Are you on the full protocol now or just starting to build up? I think you have to be on the full dose for 2 months before you can really tell if it is working. It works much slower than ABX, an increase of symptoms in the first weeks/months seems normal to me. I had good improvement with Buhner herbs for neuro issues within a few weeks (while still building up the dose). But some other problems gradually dissolved over 1-2 years. e.g. I have been severely underweight from the time I got Lyme, which got even worse after using ABX for a year (probably damaged my gut ...). Using Buhner protocol and low gluten diet gradually improved things. I went from +/- 64kg before Lyme (low already for my size), to 55kg after ABX, currently about 61.5 kg. I'm still very skinny and most of the connective tissue under the skin etc. is still missing. It really takes time. My fatigue problems started after a year of Buhner protocol (before that I had very little fatigue problems). Almost 2 years later it's now gradually disappearing. Very difficult to say what is working ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 > > after the ABX, I think you have to rebuild both your immune system and your gut (depending on use of probiotics etc. during ABX treatment). That will take months, at least. So you have to be patient... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Maybe you're not detoxing enough and/or your body doesn't detox properly. Discuss this with your doctor and if they aren't versed with detoxification protocols for Lyme disease, perhaps you should seek an adjunct doctor or naturopath who is. > > > > as Buhner says in his book that they have 95% success in the treatment. > > success in this case is 'improvement', NOT cure. Read what he has said about this on the Planet Health pages and elsewhere. The 5% with no success are people who do worse on the protocol. Even someone who sees a very small benefit is counted as 'success'. I don't object to that because if you are very ill, every small improvement is good. > > I have read elsewhere that about 25% are supposed to be cured completely with Buhner protocol (my guess is that most of these are people who were ill for shorter period, and probably a significant group who did not have Borrelia infection at all), about 50% show good improvement but no full cure (e.g. have to stay on the protocol) and about 25% have little or no improvement or adverse outcome. > > These success numbers are similar to those from many other treatments (e.g. ABX). > > Only a few alternative treatments claim close to 100% cure rate (for those who believe in magic, IMHO). E.g. in my country bioresonance practitioners (a bit similar to Rife in the US) claim 100% cure rate from Lyme. Despite this claim, I haven't been able to find ONE example of someone with proven Borrelia infection who was fully cured with this treatment. Often it works like this: the patient gets ten very expensive sessions, and if they don't return after that they are assumed to be 100% cured. It's that easy ... > > P.S.: I know that a large chunk of the 'ABX cure for Lyme' stories are similar, the docs use the standard treatment and never check the condition of their patients in 1, 2, 5 years. And if they still have problems after a year, it cannot be Lyme - by definition. Even a lot of the official medical research works like that. > > > Hope all will calm down at least a little so that I can exist normally, or at least like before treatment. > > Don't get me wrong. You CAN improve a lot, things can calm down. But if you have been ill for 1-2 years (in your case this is not too obvious to me, as most of your earlier symptoms are not necessarily due to Bb or Bart) getting back to your condition before you got infected is a stretch. If only because treatments tend to take years, and during these treatments you age, which statistically introduces new problems. > > > > > > > > > > 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.