posted
I know there are different theories pertaining to the cycles of infection and wondered if people found success with pulsing the abx or if it really should just be one long stint without interruption?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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lpkayak
Honored Contributor (10K+ posts)
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posted
the llmds i worked with did a long-high dose (high enough to cross blood brain barrier) stint first -like a year and then pulsed a year
i do know of a local doc who starts ppl with a pulse at low dose...he is lyme friendly not lyme literate. not sure what i think about what he does
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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poppy
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posted
I think it depends on the person as to which approach works best.
Posts: 2888 | From USA | Registered: Mar 2004
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TF
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Member # 14183
posted
I got rid of lyme, babs, and bart by going to a doc who followed the Burrascano protocol. There was no pulsing.
I took high doses of meds continuously. It took 13 months. (But, I was treated for lyme for 2 years prior to this.)
I also have 4 friends who went to Burrascano type doctors at my suggestion and they all got rid of their lyme disease also.
So, everyone I know who is cured got cured by taking meds continously.
I had undiagnosed lyme disease for at least 10 years before getting treated.
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
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You need to keep in mind that when you hear patient stories here, these are anecdotes and may not apply to everyone who reads them.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yes, I realize how one person reacts to pulsing could be different than someone else. But it helps to hear whether there is a potential difference.
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My suggestion to you is for you to look into the rationale behind pulsing. Then, decide based on that if you want a doctor who pulses or not.
One doc who is big on pulsing has said that he pulses because he wants the immune system of the patient to "get a peek at the germs." He believes that the meds should not do the entire job. So, he hits the germs with meds for a few days and then waits for the body's immune system to wake up and take over.
I have many reports from patients of this doctor.
So, look into the rationale and decide what you think.
The rationale for continuous high-dose meds is to kill every possible germ and not to stop treatment until the patient is symptom-free.
So, as you can see, it is totally different thinking that leads to the 2 very different approaches.
The only time Burrascano "pulses" meds is when giving IV meds. Then, he suggests a doubly high dose of meds for 4 days per week, for example. This dose will continue working the entire 7 days of the week and the 3 days off meds will help the organs to clear the toxins and prevent billary sludging.
Here is a quote:
"ADVANCED TREATMENT OPTIONS
PULSE THERAPY consists of administering antibiotics (usually parenteral ones) two to four days in a row per week. This allows for several advantages:
* Dosages are doubled (ie: cefotaxime, 12 g daily), increasing efficacy * More toxic medications can be used with increased safety (ie: vancomycin) * May be effective when conventional, daily regimens have failed. * IV access may be easier or more tolerable * More agreeable lifestyle for the patient * Often less costly than daily regimens
Note that this type of treatment is expected to continue for a minimum of ten weeks, and often must continue beyond twenty weeks. The efficacy of this regimen is based on the fact that it takes 48 to 72 hours of continuous bactericidal antibiotic levels to kill the spirochete, yet it will take longer than the four to five days between pulses for the spirochetes to recover. As with all Lyme treatments, specific dosing and scheduling must be tailored to the individual patient's clinical picture based upon the treating physician's best clinical judgment." (page 21)
And,
"Biliary and superinfection problems with ceftriaxone can be lessened if this drug is given in interrupted courses (known commonly as �pulse therapy�- refer to chapter on this on page 20), so the current recommendation is to administer it four days in a row each week." (page 14)
Of course, you want to avoid any doctor who is pulsing or giving low doses of meds just out of fear of being persecuted if he treated you more aggressively.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Regarding the doctor you mentioned who believes in pulsing and that you had many reports about him, from patients? Could you indicate how those people felt about pulsing?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I wish I could get the slides to come up, but I can't. Says my browser doesn't support HTML or some such message.
xoxo, the people who went to the pulsing doctor and wrote to me generally were unhappy with the doctor. That doesn't mean they were unhappy with pulsing. There were a lot of other issues.
One person liked the pulsing at first because it saved him money on medications and because he didn't have to take pills every day, but ultimately said he couldn't work full time and pulse, so he also left the pulsing doctor.
I got the impression that evidently he must herx or get sick each time he pulses and that is why the pulsing was interfering with his work. but, he never came right out and said that. That is what I gathered he meant.
I had a good friend who went to a Burrascano type doctor. When she went on IV, she did the IV 4 days in a row each week. That's Burrascano's idea of pulsing. She DID tell me that a few days after starting the meds each week, she would get sick. She did this for at least 9 months.
Hope you can find someone who pulses or read Dr. H's slides to gather more info on this issue.
Posts: 9931 | From Maryland | Registered: Dec 2007
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desertwind
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posted
I have been to a few different LLMD's over the past 10 years or so.
SOme have pusled and some have not. The idea behind pulsing, in addition to jump starting ones immune system, is to try to get the cyst form out of cyst. Trick them into coming out. No meds - they think it is safe - then you bomb em.
I am still at it after 10 years so for me the pusling initally did not work.
I have been with my current LLMD (Dr. H.) for close to a year and only after a year of high dose every day abx.'s are we pulsing some meds.
I am taking one abx. every day and then pusling 2 different ones during the week. This along with Byron White.
I had one "LLMD" who put me on one abx. for 6 weeks and then began pulsing. I was/am chronic neuro so that approach did nothing for me.
It is too early to tell if my current partial pusling will get me to the finish line but I can say that it is bringing on some nasty herxing.
Maybe there is no finish line.....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Thanks for posting this link for others. I watched his presentation yesterday....... he
stated pulsing could be for Bb only and could not be done for coinfections.
He also stated it was an option for people who had/have serious gastro issues. But note, on the days of pulsing the dosage is usually higher.
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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posted
I did pulsing when I first got diagnosed and did not get any benefit. Those high doses just killed my gut in spite of using massive probiotics.
I switched to a LLMD who does continuous days of treatment and am finally getting better. I only pulse Flagyl two weeks on and two weeks off, arteminisin 4 days on and 3 days off and I am on IV which is only 5 days a week. All other orals are every day.
I know that some people get better on pulsing, but it didn't work for me or my husband at all.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
The reason I asked about pulsing is because since starting this current protocol of Levaquin & Bactrim, my pain has increased significantly. It's primarily muscle soreness (body-wide & similar to when you have the flu) and joint pain. Plus, I'm only at half strength. I haven't experimented yet to see which abx is the culprit, perhaps it is both, but I was wondering if pulsing one or both would give my body a chance to recuperate in between.
I don't know if the pain is just an effect or if it is toxins building up but if it is the toxins, my body has never been good at purging them. The herx effect from my last stint on abx was really quite intense the whole time but once I finally stopped two years later, it was clear there was substantial improvement.
My hope was to get through four months on Levaquin and then switch to Rifampin until the Bart is gone while taking Bactrim the whole time.
The increased pain is tolerable but it is certainly impacting my life. My exercise routine has diminished and sitting/laying down for more than five minutes heightens the stiffness & pain. Getting up is a rather daunting action but once I get a little movement going, the pain decreases to a somewhat manageable amount.
Has anyone had similar encounters? What did you do for relief?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Thhe people I know ( personally ) never made significant improvement with ABX , and they tried both approaches . It is nice to hear some actually have recovered fully . I have not known anyone who was ill a long time before DX who totally recovered .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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