posted
In a major book about Lyme, the author writes that B told her he cured his Lyme with 3 rounds of Ceftin.
The first round was 26 months, when he stopped the Ceftin when he felt well, relapsed and allowed the relapse to get very bad, then restarted Ceftin for the second time until his symptoms were gone, then stopped it and waited for the relapse to get very bad, then restarted Ceftin for a 3rd time and treated until he was well. He stopped this third course and did not suffer a relapse.
Has anyone treated their Lyme this way?
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bluelyme
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Its called pulsing ...works for borreliosis but maybe not as well for coinfections ...if you look up how dr b cured himself there is good detail here on this site ...
he had done iv abx i believe too...there is a video where he explains pulsing ..some docs dont believe in it ...
On microscopy i saw the spirochettes are not in bloodstream but are inside the red and white cell...i am in rocephin iv zith and bvt plus herbs/rife
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(Read her Feb. 27 posts and one later post; also read the entire thread as there is a lot of misunderstanding about this approach)
This approach is not for someone just beginning to treat lyme. Rather, it is done when a patient can become symptom free but then always relapses.
Pulsing is the term normally used for taking a med or using an IV med for so many days and then taking a short break and then taking the med again.
Examples are: using IV for 4 days in a row and then taking 3 days off; taking a certain med for 3 weeks and then taking one week off; taking an herb like artemesinin for 3 days and then taking 4 days off.
It is like your pulse--follows a regular pattern.
I don't believe I have heard the term "pulsing" applied to what Burrascano and Weintraub did.
First, Weintraub said that you have to get totally symptom free. Then, when you begin to relapse, you wait and wait until you are in a full relapse. Then, you treat again until symptom free.
So, as you can see, there is no regular pattern to this and it is only done once the lyme patient gets to symptom free and yet relapses once again.
I am just pointing this out because, in the past, every time this was brought up on LymeNet, some folks got the impression that this is how their lyme should be treated right from the start.
Hey, if it worked for Burrascano, why is my doc not doing it for me?
That was the way the discussion always went, so I am trying to summarize when this therapy is appropriate right from the start to head off this kind of discussion from happening again.
I have been on LymeNet for well over 10 years and I do not recall anyone coming on here and saying that their doc did this for them and they were cured--other than for Pam Weintraub and Burrascano.
Perhaps this is because the therapy is only appropriate for those who can get symptom free but then continually relapse. Maybe not many meet the criteria for this treatment. I don't know.
garnet, do you meet the criteria? or are you just starting out with your lyme treatment?
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At 46:30 the part on cycle therapy begins.
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TF
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posted
Thanks, Notti. Very good. Straight from the horse's mouth!
Notice that Burrascano said the first cycle was 26 WEEKS, not 26 months as posted by garnet.
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quote:Originally posted by Lymetoo: I was wondering about that 26 months!!
Geez, this brain fog is worse than I thought!
I think this is an interesting thing to keep in mind.
It does seem plausible that after each antibiotic round was done, cysts reverted back to spirochetes and were able to be killed, but he waited until he had as many in spirochete form as possible.
This sounds similar to using the rife machine--killing spirochetes, waiting 12 days for cyst or L-forms to "fill the gap" left by the dying, then hit the newly formed spirochetes with the electromagnetic wave.
Anyone out there who has done this with antibiotic?
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Thank you so much for directing me to this series posted on youtube. It is fantastic.
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bluelyme
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Thanks for the clarification. .mah bad ...
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TF
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posted
garnet, the lyme doc that cured me did this with me once.
I had been on amoxicillin (high dose) for a LONG time. THen, I switched to a new doc.
After hearing the treatment I was on and for how long I was on it, he said to me, "Congratulations. You have succeeded in turning all of your lyme into the cyst form."
So he had me stop the amoxi for one week. Then, start up amoxi again but with flagyl this time. It was a real ambush.
Evidently, the week is enough to get the lyme out of cyst form. So, at the end of the week, when I started on the amoxi and flagyl combined, the lyme had no way to hide.
I got my first herx on that combo. I just did that for a month, then flagyl alone for an additional month. That was the end of my lyme treatment.
My doc moved on to treat bart while I was on the flagyl. Then, moved on to treat babesiosis. He thought that at the end of that, he would have to go back and treat me for lyme again, but that was unnecessary in my case.
After the babs treatment, I became symptom free. So, evidently my immune system took care of whatever lyme was left.
When you are not on any antibiotics, the lyme senses that and comes out of the cyst form.
"When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change from the spiral form (“spirochete”) into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form." (p. 13) Burrascano
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WPinVA
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Do you think this would work with doxy?
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bluelyme
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Doxy is bacteriostatic. Unless high dose and creates more cysts .http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
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How many chronic patients have tried approach this since then?
How many cures have we heard about?
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TF
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posted
We don't know how many patients Burrascano treated this way and how many of them were cured. Not everybody comes on LymeNet and tells us their story.
We only know that Pam did it and Burrascano did it because Pam wrote a book and told the world. Since Burrascano was describing this treatment in one of his talks and gave it a name, I would venture to say that he did it with a number of appropriate patients and it worked.
If this "cycling" approach was NOT successful, I doubt Burrascano would be teaching it to other doctors. But he is teaching it as the video referenced above proves.
Also, this approach is not for every patient. As I said above, it is just for the patient who becomes symptom free but then relapses each time meds are stopped.
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WPinVA
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I'm really intrigued by this. Thank you for posting the video!
I wish he talked more about what the "treatment" should be. I know he used Ceftin but would others work as well? Also should a biofilm buster be used at the same time? And if the patient is on herbs, should those be stopped/started on the same cycle?
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Keebler
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quote:Originally posted by TF: We don't know how many patients Burrascano treated this way and how many of them were cured. Not everybody comes on LymeNet and tells us their story.
We only know that Pam did it and Burrascano did it because Pam wrote a book and told the world. Since Burrascano was describing this treatment in one of his talks and gave it a name, I would venture to say that he did it with a number of appropriate patients and it worked.
If this "cycling" approach was NOT successful, I doubt Burrascano would be teaching it to other doctors. But he is teaching it as the video referenced above proves.
TF, does Burascano have any patient data that supports this?
Has he put out any of his own patient data to support any of his suggested therapies?
What ever happened to that database showing the results of the various LLMDs patient protocols that Dr. B said he was gathering several years back? This, as I remember it, was supposed to show us which commonly used ILADs therapies worked and which ones did not. I don't think I have seen anything about this study since he made that original announcement. I would love to see the results.
Sure, not everyone comes on Lymenet to advertise their cures. I agree. But has anyone seen any chronic patients anyplace at all who have said they were cured doing this since the book came out? There should be an awful lot out there by now, no?
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TF
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I believe that Burrascano's attempt to get lyme docs to feed data into his database was a failure. I remember hearing that they weren't doing it. Said it took too much of their time.
I don't know Burrascano personally, so I can't answer the questions about what data he has.
All I know is what he says on page 3 of the Guidelines about what the Guidelines is based on:
"Information included here is based on the literature, presentations at scientific meetings, the many valuable observations noted by my colleagues, plus experience from caring for my own patients."
Regarding the cycling, he says in the above video that he's seen it "over and over again" with his patients--meaning that he has done this over and over again with appropriate patients. Watch that little section and see what he says.
My experience with my friends who have had lyme is that they never wrote down the meds and dosages they were taking, and they never cared enough about medicine to want to tell people in that kind of detail exactly how they got well.
They just say things like, "I took an awful lot of meds--antibiotics and things."
In my experience, it is a unique person who would record their treatment protocol and then go on a lyme forum and tell others about it. The person has to first like medicine to a certain degree, be a detail person, and finally care about giving to other lyme patients who have nothing to offer them back.
Most people who get rid of lyme disease don't care to get involved with helping others who are suffering with it. My experience over 13 years.
Maybe you can write to Burrascano and get him to reply.
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WPinVA
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If we wait for patient data for any Lyme approach, no one would be able to do any treatment. Alll we have for most approaches (if not all?) is the experience of LLMDs and patient experiences.
Personally, if Burrascano says in his (vast) experience it has helped many patients, I think that's as good as we're going to get for now for any treatment approach.
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I certainly can empathize with this view. I have said the same or similar many times.
The trouble is that this has been going on for close to forty years now. There has been ample time for ILADs doctors to have papers published demonstrating the efficacy of their treatment protocols.
There may be others, but the only published paper like this that I'm aware of is Dr.D's, on the use of biaxin and plaq on treatment-resistant Lyme (this is to the best of my memory, which, admittedly, is not great!).
Has there been anything published from Dr. B? Dr. H? From any of the others?
You said,
"Personally, if Dr. B says in his (vast) experience it has helped many patients, I think that's as good as we're going to get for now for any treatment approach."
I wish I could be confident as you about this. But I have known and talked to too many LLMD patients over the years who have failed these therapies, including patients of Dr. B. When Dr. B retired, he mentioned starting, or becoming involved with, several long-term projects that could potentially help chronic patients.
One of these was the one I mentioned in a post above. In that study, they were going to make a database of protocols used by ILADs LLMDs, and they were going to chart the various success and failure rates. This would have been very helpful to patients and to other physicians. I know I was excited when I heard about it. But, apparently, that idea didn't work out. Why?
TF said,
"I believe that Burrascano's attempt to get lyme docs to feed data into his database was a failure. I remember hearing that they weren't doing it. Said it took too much of their time."
As someone who has been a patient of four different LLMDs since the 90's, a couple of them presidents of ILADs, I can't help but be a tad more cynical. Maybe it's just like they said, that it took too much of their time.
If so, what does that say of their commitment to us, their patients, who often pay enormous rates out of pocket, many going into debt (if not outright bankruptcy)? Don't they owe at least that much to us? Maybe I'm naive, but I would think they do.
But you know, there may be another reason. They may not want anyone to see just how high their treatment failure rates are.
A while back, I participated in an online survey on Lyme therapy. I think it was put out by Calda. In the results (and this is from memory, which is still bad!!, so give me a bit of slack), it said that a majority of patients improved to some extent from extended abx therapy. But about 15-20% got worse.
Those are good figures if you're in the majority, not so good if you aren't.
And that's not factoring in that a survey like that is likely to be heavily loaded with responders -- as those who have failed therapy are not likely not putting as much faith into these sites and organizations that represent these ideas anymore.
As I said above, I have been sick since the 90's. Since then I, like most of us on here, have tried to study and learn as much about this as I can. After all these years, I'm sorry to say that I am way less sure about the nature of our illness than I used to be. I was once sure that the ILADs model is right. Now? I really don't know.
But I am thrilled to see that here and there some real research is finally being conducted regarding immunity, persistence, etc.
So, back to the idea of a CURE (what does that even mean -- cure?) coming from several pulses of ceftin ... well, reassurances from Burrascano notwithstanding, call me skeptical.
bluelyme
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posted
My lyme data. .is a pain in the gulliver but trying to compile info ..hey curza99 has estimate of 2018.... if its all bs then cycling sounds like less harsh on body.
pulsing gives me time to live while i am dying. And if it takes 15 yrs its 14 more than i thought last year.
seeing the microscopy of lymed in 2010 and others my self includes then i know i got to let them come out of the rbc and bam with whatever works ...
"Tf said ..stopped all treatment for a week then hit with amox and flagyl, it was an ambush"..neither of those are intercellular sooo?
Still naive and hopeful...others had resolution from wasting with 5 months of mino/flagyl .maybe tini and alinia just isnt good ol carcinginic metro
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WPinVA
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I think we can all agree that more data is better. And no one is claiming the the Ceftin trial is THE CURE. THE CURE is not out there yet, clearly, or else we'd all be doing it.
So my attitude is, I'm willing to try something that Dr. B says in his experience has helped many patients. Because if I don't try this sort of thing that LLMDs recommend, what is my alternative? Not willing to do nothing until there THE CURE finally comes along.
I had read about this long ago and forgot all about it until this post came along. Very glad it was raised on here.
That's how I approach this. Certainly not trying to tell you you have to approach it the same way.
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