single antibiotic treatment

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ltc1225
New Member


Date Joined Dec 2017
Total Posts : 19
   Posted 5/1/2018 4:36 PM (GMT -6)   
I started out my treatment with my llmd on Bactrim for the first four months, i saw little progress and developed some new symptoms. My llmd now suspects i have Bartonella along with my lyme

my main symptoms:
leg pain and horrible shin pain
nerve pain all over body
headaches
ear pain, vibrations,
muscle spasms and cramps
chest pain
Joint pain
anxiety
hand tremors and sometimes body tremors
eye pain
blurred vision
poor appetite
and of course fatigue

As more of these symptoms came apparent on Bactrim my LLMD switched my antibiotic to Rifampin just last week. According to my symptoms it had lead my LLMD to think i have Bartonella. My question is since I've been seeing most people that have positive results on here are using more than one antibiotic at a time is it a bad idea that im only on Rifampin now? i can tell im herxing so far with the rifampin but is this a bad idea to do alone with no other antibiotic?

Thanks to all that can help

Post Edited (ltc1225) : 5/1/2018 5:28:54 PM (GMT-6)


goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2115
   Posted 5/1/2018 5:05 PM (GMT -6)   
Most llmd's do treat with more than one antibiotic at a time. Many treat with three at a time and do pulsing.


The exception being a known new tick bite and/or bullseye then I believe its usually just doxy .

The Bactrim should have hit some of the Bartonella too, but I think many llmd's use the Rifampin due to better results.

Others should be along soon to chime in.

I wish you the best of healing and take care.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32625
   Posted 5/1/2018 5:22 PM (GMT -6)   
Goshawk gave you some good information .

Your symptoms do sound like Bartonella.

I have/had a lot of nerve pain, tremors, tinnitus (pulsatile), bone pain


Llmd’s usually treat with more than one antibiotic - this helps to prevent resistance to the antibiotics.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/2/2018 3:25 AM (GMT -6)   
Rifampin is almost always paired with another antibiotic in both human and veterinary medicine. The reason for this, is that many of the pathogens Rifampin targets (tuberculosis for example) have been shown to develop resistance very quickly. For Lyme specifically, bacterial resistance in the technical sense of the word has never actually been documented, but we all know that a lot of the science surrounding Lyme is questionable at times and there are always new exceptions that seem to be emerging all the time, and some researchers have hypothesized that resistance is potentially a reason behind Lyme treatment failures.

Using Rifampin for tick borne infections is considered off-label use, however it is very common and there are some good studies out there that show Rifampin is an effective treatment for ehrlichia as well as many strains of bartonella (which the CDC will tell you isnt tick borne at all, but thats for another post). There are also a lot of anecdotal reports on the internet of Lyme patients having a lot of success using Rifampin.

Not to confuse you, but monotherapy versus combination therapy can be a tricky subject. Some people have a lot of success keeping treatments simplified as possible and sticking to one medication, but over time as the disease progresses, most people treating Lyme who are going to LLMD's start using combination therapies because monotherapy has failed. Mono vs combo therapy can be even more tricky with Rifampin, because although, as I mentioned above, it is almost always used as a combination therapy, there are some concerns that Rifampin can speed up or slow down the metabolism of some other drugs, which may necessitate a change in dosage. So using a combo therapy with Rifampin, you have to be careful what you pair it with. There is a lot of research out there about this subject. In fact if you do simple search of the word "Rifampin" on google, pulling up a drug facts page you will see that most times it used in combination therapy. It might be a good idea to print this off and take it in to your doctor and ask him what is his rationale for using it alone.

One thing I really hate about these diseases is the "guessing game" a lot of doctors like to play. Dont get me wrong, there are a lot of good doctors who do clinical diagnosis and a lot of times success comes for people through following the steps of simple trial and error, but it also leaves a lot of room for lazy and un-knowledgeable practitioners to make convenient excuses for why you arent getting better. "Oh well you must have X coinfection which we havent treated yet and you havent tested positive for, lets try that" It's good to cover your bases, because tick diseases do travel in pairs and 3's and 4's, but I have seen a lot of people running on the hamster wheel with bad doctors who arent thorough. And it can be hard to tell if you are dealing with an experienced doctor who has good foundation for clinical diagnosis, or someone who is just winging it. This is why it's best to try to get as much of a clear answer as possible when it comes to coinfections. You want a positive test if you can get it, to prove infection to yourself and your doctor. Coinfection testing is just as difficult, or even more so than Lyme testing, but there are options if you can afford to pay for certainty.

There is a guy named Dr Breishwerdt who is a renowned veterinarian at NC State and is one of the top Bartonella researchers in the country. For what it's worth, he usually pairs Rifampin with Doxy, or Doxy with a floroquinolone to treat Bartonella.

His focus on Bart obviously began through diagnosing researching and treating Bart in dogs and cats. In his research he became frustrated that there werent very many accurate tests for Bartonela species available, so his team at NCST developed their own highly sensitive PCR testing technique for Bartonella. This PCR test has an absolute zero chance of a false positive. It uses 3 different blood draws.

He received so many inquiries to test people, that he actually started his own private sector diagnostic service called Galaxy Diagnostics that uses this refined testing technique. This is the best Bartonella test in the country, and if you have it, odds are they will find it. The downside is that it's VERY expensive. The full triple draw PCR coupled with standard Bartonella antibody tests is $970 and they dont bill insurance, (although you could possibly be reimbursed by your insurance company) If you can afford it, I would push your doctor to do this.

Whats great about Galaxy, is that they actually have contracted with a company called "Any Lab Test Now" that has locations all across the US. They will do any lab test without a doctor's order and provide the results directly to you. They take your blood and send it directly to Galaxy. You cant even do that with Igenix. You have to have doctor order it. So if your doctor refuses, and if you have the money (which is a big IF for most people) and really want to know if you have Bart you now have the option of doing it yourself.

Certainty is always best, if possible. But to answer your original question, there are a lot of different ways Rifampin is used by LLMD's. It can be effective for both Bart and Lyme in certain cases. Most times I have heard it being used as part of combination therapy, but it's not completely unheard of to use it alone. I would ask your doctor what his strategy is behind using it alone, and if you arent satisfied with his answer, maybe seek treatment elsewhere if that is an option for you.

On a side note, some reports say Rifampin should never be pulsed because there have been some reports of kidney problems if it is used intermittently. However some very experienced Lyme doctors have recommended pulsing it, and there are even people on this site that have pulsed it without any noticeable issues. Overall it seems pretty safe. Just watch your liver enzymes if you can, and dont be frightened if it tuns your sweat and urine red. This is very common and actually a good sign your body is absorbing the medication properly.

Like with most things Lyme related there is really no overall consensus. A lot of different methods are used, some unconventional. This is why it's important to have an experienced Lyme doctor whom you can trust who will answer all your questions. After all it is your treatment. Try to learn as much as you can. Research and ask a lot of questions. If this doctor cant or wont answer them, maybe move on if you have other choices. Keeping it simple isnt necessarily a bad approach, but at the same time I think you are right to question what the strategy is behind monotherapy when it seems most are using combination therapy for Lyme. Maybe he just wants to build you up to that slowly, so if you have a negative or positive reaction, you know what to attribute it to.

Post Edited (logmoss82) : 5/2/2018 4:04:39 AM (GMT-6)


ltc1225
New Member


Date Joined Dec 2017
Total Posts : 19
   Posted 5/2/2018 5:42 AM (GMT -6)   
logmoss82 said...
Rifampin is almost always paired with another antibiotic in both human and veterinary medicine. The reason for this, is that many of the pathogens Rifampin targets (tuberculosis for example) have been shown to develop resistance very quickly. For Lyme specifically, bacterial resistance in the technical sense of the word has never actually been documented, but we all know that a lot of the science surrounding Lyme is questionable at times and there are always new exceptions that seem to be emerging all the time, and some researchers have hypothesized that resistance is potentially a reason behind Lyme treatment failures.

Using Rifampin for tick borne infections is considered off-label use, however it is very common and there are some good studies out there that show Rifampin is an effective treatment for ehrlichia as well as many strains of bartonella (which the CDC will tell you isnt tick borne at all, but thats for another post). There are also a lot of anecdotal reports on the internet of Lyme patients having a lot of success using Rifampin.

Not to confuse you, but monotherapy versus combination therapy can be a tricky subject. Some people have a lot of success keeping treatments simplified as possible and sticking to one medication, but over time as the disease progresses, most people treating Lyme who are going to LLMD's start using combination therapies because monotherapy has failed. Mono vs combo therapy can be even more tricky with Rifampin, because although, as I mentioned above, it is almost always used as a combination therapy, there are some concerns that Rifampin can speed up or slow down the metabolism of some other drugs, which may necessitate a change in dosage. So using a combo therapy with Rifampin, you have to be careful what you pair it with. There is a lot of research out there about this subject. In fact if you do simple search of the word "Rifampin" on google, pulling up a drug facts page you will see that most times it used in combination therapy. It might be a good idea to print this off and take it in to your doctor and ask him what is his rationale for using it alone.

One thing I really hate about these diseases is the "guessing game" a lot of doctors like to play. Dont get me wrong, there are a lot of good doctors who do clinical diagnosis and a lot of times success comes for people through following the steps of simple trial and error, but it also leaves a lot of room for lazy and un-knowledgeable practitioners to make convenient excuses for why you arent getting better. "Oh well you must have X coinfection which we havent treated yet and you havent tested positive for, lets try that" It's good to cover your bases, because tick diseases do travel in pairs and 3's and 4's, but I have seen a lot of people running on the hamster wheel with bad doctors who arent thorough. And it can be hard to tell if you are dealing with an experienced doctor who has good foundation for clinical diagnosis, or someone who is just winging it. This is why it's best to try to get as much of a clear answer as possible when it comes to coinfections. You want a positive test if you can get it, to prove infection to yourself and your doctor. Coinfection testing is just as difficult, or even more so than Lyme testing, but there are options if you can afford to pay for certainty.

There is a guy named Dr Breishwerdt who is a renowned veterinarian at NC State and is one of the top Bartonella researchers in the country. For what it's worth, he usually pairs Rifampin with Doxy, or Doxy with a floroquinolone to treat Bartonella.

His focus on Bart obviously began through diagnosing researching and treating Bart in dogs and cats. In his research he became frustrated that there werent very many accurate tests for Bartonela species available, so his team at NCST developed their own highly sensitive PCR testing technique for Bartonella. This PCR test has an absolute zero chance of a false positive. It uses 3 different blood draws.

He received so many inquiries to test people, that he actually started his own private sector diagnostic service called Galaxy Diagnostics that uses this refined testing technique. This is the best Bartonella test in the country, and if you have it, odds are they will find it. The downside is that it's VERY expensive. The full triple draw PCR coupled with standard Bartonella antibody tests is $970 and they dont bill insurance, (although you could possibly be reimbursed by your insurance company) If you can afford it, I would push your doctor to do this.

Whats great about Galaxy, is that they actually have contracted with a company called "Any Lab Test Now" that has locations all across the US. They will do any lab test without a doctor's order and provide the results directly to you. They take your blood and send it directly to Galaxy. You cant even do that with Igenix. You have to have doctor order it. So if your doctor refuses, and if you have the money (which is a big IF for most people) and really want to know if you have Bart you now have the option of doing it yourself.

Certainty is always best, if possible. But to answer your original question, there are a lot of different ways Rifampin is used by LLMD's. It can be effective for both Bart and Lyme in certain cases. Most times I have heard it being used as part of combination therapy, but it's not completely unheard of to use it alone. I would ask your doctor what his strategy is behind using it alone, and if you arent satisfied with his answer, maybe seek treatment elsewhere if that is an option for you.

On a side note, some reports say Rifampin should never be pulsed because there have been some reports of kidney problems if it is used intermittently. However some very experienced Lyme doctors have recommended pulsing it, and there are even people on this site that have pulsed it without any noticeable issues. Overall it seems pretty safe. Just watch your liver enzymes if you can, and dont be frightened if it tuns your sweat and urine red. This is very common and actually a good sign your body is absorbing the medication properly.

Like with most things Lyme related there is really no overall consensus. A lot of different methods are used, some unconventional. This is why it's important to have an experienced Lyme doctor whom you can trust who will answer all your questions. After all it is your treatment. Try to learn as much as you can. Research and ask a lot of questions. If this doctor cant or wont answer them, maybe move on if you have other choices. Keeping it simple isnt necessarily a bad approach, but at the same time I think you are right to question what the strategy is behind monotherapy when it seems most are using combination therapy for Lyme. Maybe he just wants to build you up to that slowly, so if you have a negative or positive reaction, you know what to attribute it to.


Thanks for the detailed response, I suppose my doctor could be seeing how I react to rifampin for the first month but I will talk with him about all the information about using combination therapy with rifampin. It will only be my fifth month in the treatment so I’m not sure if he’s still considering me in a trial and error phase because I have been reacting strong to the antibiotics. I was recommended by to him by two people who have recovered pretty well from their Lyme as well as people that work in his office. The galaxy diagnostics sounds really useful and I will look into that, it’s very frustrating going along that I have bartonella with most of the symptoms but no positive test yet. I do recall him saying “I want to see how you do on this one”. When giving me rifampin last week

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32625
   Posted 5/2/2018 9:43 AM (GMT -6)   
logmoss:

"There is a guy named Dr Breishwerdt who is a renowned veterinarian at NC State and is one of the top Bartonella researchers in the country. For what it's worth, he usually pairs Rifampin with Doxy, or Doxy with a floroquinolone to treat Bartonella."

Are you sure about the doxy? I know that his partner - Dr. M. uses biaxin with rifampin/Rifabutin. ( not doxy).

I'm one who has pulsed the Rifampin.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/2/2018 12:57 PM (GMT -6)   
Yes Girlie, you are correct Dr. M works with Dr Breishwerdt to develop his treatment protocols for people, and he does use it with Biaxin. Dr. M also seems to use Rifampin monotherapy.

Here's a quote from Dr Breishwerdt's research: " For canine cases with CNS involvement doxycycline and rifampin in combination has been used successfully. For long term therapy doxycycline and enrofloxacin in dogs and doxycycline and pradofloxacin in cats should be considered, until other antibiotics or antibiotic combinations are proven to be effective. A combination of two antibiotics with different modes of action, one achieving high blood concentrations and the other achieving high intracellular concentrations is seemingly needed to eradicate Bartonella infections."

There is a well known LLMD in Maryland who blogs under the pseudonym "Lyme MD" who also combines Rifiampin with doxy, as well as other antibiotics for "Lyme disease complex". - http://lymemd.blogspot.com/2008/07/why-does-rifampin-work-so-well.html

Doxy is also commonly paired with Rifampin for treatment of Brucella, although again there is some research that shows that Rifampin can decrease Doxy absorbtion. Complex stuff. One size does not fit all and your mileage may vary.

Off topic I know, but Sometimes there are a lot of drug myths that show up in limited studies that people pass on that can only really be proven or disproven by trying it in the real world. For example the Rifampin pulse warning in your case, Girlie. Also there was once a longstanding myth that expired doxycycline is highly toxic. This was based on 1960's research that cited 2 cases of renal impairment that may or may not have been caused by the medication, and it turned it out it if it was caused by the medication, it was likely the binders that were used, not the drug itself that degraded into a toxic substance. This binder is no longer used in modern doxycycline, but this myth persisted for many years and still persists in some places. The military conducted testing as part of their Shelf Life Extension Program to test the viability of using expired medicines instead of throwing away billions of dollars of antibiotics. One of their findings was that Doxycycline can be used up to 3 years or longer beyond it's expiration date and still have 98% potency. The only danger is that it would lose it's potency over time and not be effective. The CDC even has handouts about Anthrax that explain that in the event of an outbreak they may issue Doxy that is beyond its expiration date, but that it is perfectly safe to take. This warning about taking expired doxycycline used to appear on many reputable sites, but most all major sites have since removed this warning.

It's good to weigh all the research you can and learn as much as you can about your medication. Even with all the research out there, there are still times where the research is wrong, and you don't really know until you try it in the field. This seems to happen quite a bit in the Lyme treatment world.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32625
   Posted 5/2/2018 2:02 PM (GMT -6)   
Yes - I realize that other llmd’s pair doxy with riffy but thought Dr M and Dr B were on the same page with the Biaxin and Rifampin/Rifabutin.
LLMD MR in Washington state lists doxy and riffy together for Bart treatment.


Dr M starts with Biaxin - sometimes for many months bfore adding the Rifabutin.

I have emailed with a few patients of Dr M’s and each case - they were on the Biaxin for an extended time...before the riffy was added.
(I would have trouble being a patient patient - would want that Rifabutin NOW.. lol)


The Rifampin pulse - if I’m remembering correctly - it was kidney failure when restarting it
And didn’t they recover ? Or did someone die?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/2/2018 2:05:11 PM (GMT-6)


logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/2/2018 3:52 PM (GMT -6)   
Yes there were a few different case studies about it. One study from Turkey showed various different adverse reactions from kidney problems and they attributed it to intermittent dosing. So the takeaway was that it shouldnt be done due to the risk. But it seems pretty common among some LLMds.
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