Jump to content
ACN Latitudes Forums

Recommended Posts

Does anyone know if this can be done on your own? I don't know if our LLMD is familiar with this plan. I would hate to do anything that interferes with my son's treatment but was wondering if you do not have a dr to guide you, can this be done from his book and website?

 

We are still in the early treatment stage, only 2 months on doxy and biaxin, plus I am waiting for blood work results from a nutritional panel. We see our dr next week and I was going to ask him about this.

 

I know RowingMom is familiar with this protocol, but just wondering if anyone had any feed back.

 

Thanks

 

Link to post
Share on other sites

You can do this by yourself, but you should read the Lyme Coinfections, and the newer Herbal Antibiotics and Herbal Antiviral books before you attempt it.

 

Julie McIntyre, Buhner's associate is available for consult, but again you will need the info from the books to understand what it is she suggests, and why she suggests it.

 

Our LLMD knows nothing about herbs, but has OKed their use in our situation. We continue with semi-monthly CBC CMP testing.

 

Whatever you do, do not attempt beginning with Buhner's suggested dosages. We have found them to be much too high (with the exception of Japanese knotweed), and that the herxing threshold is reached at about 1/3 suggested dosage. Even the dosages Julie suggested were too high for DD. We are using the entire bartonella protocol with the exception of l-arginine and with the addition of CSA (cryptolepis/sida/alchornea).

 

As with abx/supplement protocols begin with one at a time and don't start another for a couple of weeks. Chart daily to pick up on herx reactions.

Link to post
Share on other sites

My son's cardiologist has also told me that I could start my ds on the herbs. However I have to start only one at a time and on the very lowest dosage. I will have to go very slowly because of my son's heart and blood pressure problems. I just got my books this last Saturday and have started reading. I plan on starting my ds on the Japanese knotweed first to see if it will help with the brain inflammation.

Link to post
Share on other sites

Does anyone know if this can be done on your own? I don't know if our LLMD is familiar with this plan. I would hate to do anything that interferes with my son's treatment but was wondering if you do not have a dr to guide you, can this be done from his book and website?

 

We are still in the early treatment stage, only 2 months on doxy and biaxin, plus I am waiting for blood work results from a nutritional panel. We see our dr next week and I was going to ask him about this.

 

I know RowingMom is familiar with this protocol, but just wondering if anyone had any feed back.

 

Thanks

 

You need to understand that biaxin (which I am taking with rifabutin) is a major C3A4 inhibitor. This means biaxin can affect the bioavailability (usually but nor always increase) of many drugs and herbs.

Because many herbs are poorly understood you are taking unknown risks adding herbs to biaxin. You should also be aware that Sida Acuta which is a major part of Burhner's protocol has ephedra in it. When I took it it was last summer (before I started biaxin) and I was sitting outside in 85 degree whether with a robe on and shivering. These herbs are very powerful and with children one has to be more aware. The more I learn about western abx and herbals the more I believe they should not be mixed. Especially with powerful drugs like biaxin and rifabutin. I also believe that not all negative reactions are herxes. One simple may be having a negative response to the combo of drugs and or herbs. Herxing is very difficult to understand. When the body is overloaded with inflammatory agents the threshold for painful episodes it lowered.

Edited by red
Link to post
Share on other sites

 

Does anyone know if this can be done on your own? I don't know if our LLMD is familiar with this plan. I would hate to do anything that interferes with my son's treatment but was wondering if you do not have a dr to guide you, can this be done from his book and website?

 

We are still in the early treatment stage, only 2 months on doxy and biaxin, plus I am waiting for blood work results from a nutritional panel. We see our dr next week and I was going to ask him about this.

 

I know RowingMom is familiar with this protocol, but just wondering if anyone had any feed back.

 

Thanks

 

You need to understand that biaxin (which I am taking with rifabutin) is a major C3A4 inhibitor. This means biaxin can affect the bioavailability (usually but nor always increase) of many drugs and herbs.

Because many herbs are poorly understood you are taking unknown risks adding herbs to biaxin. You should also be aware that Sida Acuta which is a major part of Burhner's protocol has ephedra in it. When I took it it was last summer (before I started biaxin) and I was sitting outside in 85 degree whether with a robe on and shivering. These herbs are very powerful and with children one has to be more aware. The more I learn about western abx and herbals the more I believe they should not be mixed. Especially with powerful drugs like biaxin and rifabutin. I also believe that not all negative reactions are herxes. One simple may be having a negative response to the combo of drugs and or herbs. Herxing is very difficult to understand. When the body is overloaded with inflammatory agents the threshold for painful episodes it lowered.

 

 

@ Red - You are quite right. Herbs can be powerful because they contain many antimicrobial constituents, unlike antibiotics. Some contain components that act as efflux pump inhibitors potentially making the effects of antibiotics more potent.

 

You need to read Buhner's books and understand how each of these herbs work, their different constituents, why they are effective on certain types of bacteria, and their potential side effects. Buhner does a wonderful job of clearly stating all of this information.

 

If you think that the presence of ephedra compounds in the sida species is unacknowledged by Buhner, that you are outing his protocols, you are very wrong. There is much discussion of this in the Herbal Antibiotics: Natural Alternatives for Treating Drug-Resistant Bacteria book; which I why I recommend reading all of the books before undertaking the protocol, with or without the help of a physician.

 

And frankly, even with the input of any physician/LLMD/naturopath I still educate myself on all aspects of any protocol. There is too much room for error and I TRUST NO ONE.

 

I have given these books to both our LLMD and naturopath, and I hope they read them. I have learned enough along the way to realize there are risks to everything - even physician-led antibiotic therapy, which is why we continue to run bimonthly CBC CMP tests and to chart symptoms daily.

 

If you have cured yourself of bartonella with biaxin/rifabutin, good for you. I am glad that you can come to this forum and state that the abx protocols others are using are useless. I would personally leave the abx decisions up to the LLMDs.

 

We are having better results with Buhner than we had with abx. I have not made a secret of the fact that DD completed 2 years of multiple combo antibiotics before starting herbs.

 

I am simply reporting my findings. Buhner has worked for us, but may not work for you or others. The choice is entirely yours to make.

Edited by rowingmom
Link to post
Share on other sites

Thank you everyone for all your input.

 

I am not saying that abx have not worked, we are still in the beginning stages and have only been on doxy/biaxin for 2 months. I just was wondering if you can do Buhner while on abx and if you have to do it under the supervision of a doctor.

 

I know rowingmom has been having great succes and appreciate all your advice. As we know, it is different for every person and how their body responds. I wish there was some standard method that we could all follow, but these stupid illness' like lyme and pandas do not follow any rules.

Link to post
Share on other sites

Where did red or lindamw state that abx protocols are useless?

 

Sorry, I should have qualified that remark. Red made the remark in Trinity's post on the use of minocycline monotherapy to treat bartonella.

 

"No single drug can kill bart. It has to be a combo. The 2 best drugs are baixin and rifabutin. Rifabutin has less side effects than rifampin. Azithromycin has shown to be ineffective with bart. Breitschwerdt has said they see early resistance to azith in animals and have move to biaxin as a result."

 

While I don't think rifampin should be used alone because resistance develops quickly, I don't think Trinity's doctor needs to be questioned. Perhaps he/she is trying to reduce loads of other infections before adding other abx to the protocol. Trinity's daughter is very sensitive and has obvious trouble with many abx and supplements.

 

The last time I saw this person on the forum was about 1 year ago. He had lots of information about abx protocols then as I recall, but told us nothing about his history, or whether he has children that he has recovered. Nothing.

Link to post
Share on other sites
  • 2 weeks later...

Dear Rowingmom,

You seemed to have both misunderstood my posts and misrepresented my position as a result.

You accuse me "If you think that the presence of ephedra compounds in the sida species is unacknowledged by Buhner, that you are outing his protocols, you are very wrong".

When in fact I said "You should also be aware that Sida Acuta which is a major part of Burhner's protocol has ephedra in it. When I took it it was last summer (before I started biaxin) and I was sitting outside in 85 degree whether with a robe on and shivering". I never suggested or inferred that I was outing Burhner nor did I even remotely imply that somehow Burhner was hiding that ephedra is in Sida Acuta. Burhner states in his book (which I am very familiar with thanks for the suggestion) that Acuta has ephedra.

The context/purpose of using the ephedra experience (it very well could have been another herb from another protocol) was quote "Because many herbs are poorly understood you are taking unknown risks adding herbs to biaxin. These herbs are very powerful and with children one has to be more aware. The more I learn about western abx and herbals the more I believe they should not be mixed".

Try re-reading what I said and hopefully you can come away with the concept that "I am wary of mixing abx with herbs. And that with children I think it is more dangerous". Now I do not expect agreement but that is what I was stating.

I have had my CYP 450 cytochrome analyzed to better understand my personal metabolic profile. It is important to understand that we all metabolized drugs and herbs differently due to genetics. I also use a sophisticated computerized drug/herb interaction program that includes my metabolic panel to assist me when taking drugs/herbs. I have considerable experience in alternative therapies especially TCM herbs and acupuncture. 10 years ago I was mid-diagnosed with Lyme + babesia and was treated by 2 of the top LLMDs and also did the Zhang protocol for Lyme. I then found Ritchie Shoemaker and he save my life with a mold diagnosis. In a few short months I recovered completely after CSM + $100K house remediation. Yes $100k. So I have seen that LLMDs can be quite as narrow minded as standard western docs who do not believe in chronic Lyme/bart.

Ironically I now have a firm diagnosis of bartonella from Galaxy diagnostics in Sept 2011. I have virtually not one diagnostic indicator of Lyme disease. I believe as Edward Breitschwerdt believes bartonella is not a co-coinfection but a stand alone disease that has multiple vectors/sources and that bartonella is very under diagnosed. I undoubtably had it for years but because I was treated with hormones and radiation for prostate cancer I kept blaming my symptoms on that hence my delay finding bart. I have a very severe case of it most like due to how long I have had it before tx started.

You also commented about me "The last time I saw this person on the forum was about 1 year ago. He had lots of information about abx protocols then as I recall, but told us nothing about his history, or whether he has children that he has recovered. Nothing."

If one looks at my comment history I joined the list in July 2012 and post 35 times up to Dec of 2013. I then quite posting because I realized that I was on a list of mostly women who were self treating their children. And you all did not like what I was saying so I quit for a few months. I have nothing to hide nothing at all. Rowingmom you sound like I am to be distrusted because I am not one of you. After all I am probably old enough at 66 to be your father. But I think if you go back and read some of my posts I did talk about my history. I do not understand why you think I have told nothing about my history or my children. How strange. Is having a sick child a requirement to post on this group? I myself did not like it when the Pandas group was combined with Lyme group. Two very different diseases. I have a nephew with Pandas and keep up closely with my niece on his medical condition so I am at least familiar with the disease.

"As for your comment While I don't think rifampin should be used alone because resistance develops quickly, I don't think Trinity's doctor needs to be questioned".

Remember the context of the question from trintibella "my child can handle the minocycline and there is some improvement on it, but the bactrim is a no go...wondering if anyone ever used minocycline alone to treat lyme/bart?" I was not questioning Trinity's doctor. I was answering the question if anyone use minocycline as a mono treatment for bartonella". So I was responding to the question about mono treatment and I was not "questioning" Trinity's doctor! I was answering a query.

As for your response that "I don't think rifampin should be used alone because resistance develops quickly" I would disagree with it. It is well established that no one western abx can kill bart. Resistance to rifampin is not the issue. Rifampin is one of the major drugs of choice because it is so effective at breaking down the cell wall but an additional abx is needed to kill the bacteria hence no one western abx can kill bartonella. Breitschwerdt has established that dogs show early resistance to azithromycin as well as poor outcomes with doxy in dogs. I have read every article Ed Breitscwerdt has published.

That said here is link to on the better papers I have read on bart and Lyme. It's by a German doctor who has published 40 papers on LYme and all of them except this one are in German.

Chronic Lyme Disease and Co-infections: Differential Diagnosis

http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

As for me I am a western trained medical professional scientist whose training is in biomechanics. I have nearly 40 years as an allied health care provider and have published in peer review journals. I am a skeptic when in comes to medicine. I think most medicine both western and alternative medicine is not very well practiced. I would say only about 20% of practitioners are any good.

And finally you say "If you have cured yourself of bartonella with biaxin/rifabutin, good for you. I am glad that you can come to this forum and state that the abx protocols others are using are useless. I would personally leave the abx decisions up to the LLMDs".

1. I am not cured and I am under the treatment of a LLMD. 2. I did not come to this forum and state that the abs protocols of others are useless. I cautioned against the use of abx and herbals together. That is hardly telling other people their protocols are useless. If you think I have inappropriately told someone their abx protocol is useless then quote me. I stand by my statement that singular abx does not have a chance to cure bartonella. I have read upwards of 150 scientific western papers (I have also read a herbal and other alternative papers) on bartonella. I have yet to read one paper that claims a mono-thereapy is effective. Otherwise I have to consider this comment deliberate sarcasm. You have created in your mind a fantasy of who you think I am and then have responded to that fantasy. "The last time I saw this person on the forum was about 1 year ago. He had lots of information about abx protocols then as I recall, but told us nothing about his history, or whether he has children that he has recovered. Nothing".

Edited by red
Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...