Ive heard through the grapevine that Burrascano (sp?) cured himself by stopping all meds, letting symptoms get bad, then take ceftin heavily for a period. stop and repeat 2 more times. Can someone tell me where I can read about it. Or can someone give me more info? thanks.
Posted by WildCondor (Member # 434) on :
Thats personal info that only he should share if he is asked personally. The rest is hearsay. Just read the guidelines..it is all there spelled out with doses etc. Ceftin in high doses works great, 3,000 mg/day is what I was on with 2,000 mg Biaxin, 1.2 Bicllin 4x week and Flagyl on pulse plus HBOT 2x/day. That might give a clue.. Posted by Brandimc (Member # 22017) on :
Oh, I thought it was published somewhere in a book...I just thought it would be a good read.
Posted by seekhelp (Member # 15067) on :
It's in Cure Unknown. No mystery. This assumes Pam W and Dr B are being honest about their protocols and not leaving out what they may have done for years beforehand (i.e., IV, combo Abx, etc.).
Posted by sutherngrl (Member # 16270) on :
So was Dr B, this family's lyme doc?
Posted by Keebler (Member # 12673) on :
- Yes. One and the same. It's detailed in this book.
The author also used some of the same patterns as stopping and starting again - repeatedly - and is doing very well now.
** See the author's posts below (posts #36 and #38) for clarification. **
This is in the library system and at video outlets and NetFlix. The DVD can be purchased for $35 and is worth every penny. It does not discuss specific treatments but you can get a sense of how different doctors approach it, varying techniques according to the patients' needs. -
[ 01-15-2011, 01:13 PM: Message edited by: Keebler ]
Posted by sutherngrl (Member # 16270) on :
So if this info is honest, there is no need to treat for the cyst form of BB??? Just stop antibiotics at remission; then the cyst break apart, relapse takes place, and treat again.
This seems like the simplest way to treat. Why isn't it being used by more LLMDs? Why isn't it in the treatment guidelines?
Posted by seekhelp (Member # 15067) on :
I think we're taking it out of context and the man probably hit the Bb with nukes before he jumped to this protocol. I don't think he would've Rxed WC enough meds to blow Bb into kingdom come if he really, truly believed it could be cured with Ceftin. lol.
Posted by sutherngrl (Member # 16270) on :
Not to blow anything out of context, but..... It took WC 5 or 6 years to get well! Even low dose treatment can cure in that amount of time.
So maybe the remission, relapse, repeat is the way to go!
Posted by seekhelp (Member # 15067) on :
I'm not sure SG. I think the jury is out. I know your opinion on the subject. However, I've heard of many very ill people doing monothrapy for 5-10 years and not cured, not better, still bedridden at times. I think it depends just how ill you are to start. Lots of relapsing too when weak therapy is in play. yeah, there may be a 3-5 yr plan, but by that time most of lost all we have.
There are no definitive answers and I'm certainly not one to talk as I didn't go through WC's intense program. Wasn't WC on death's door when she fell ill? I also don't know her age when she contracted Lyme. I watched the Mystery Diagnosis episode, but I'm not sure how much the actor who played her was de-identified.
My only background for my statement is hearing how many people were seeing some of my docs who just never got into remission/better. The best proof is just opening your ears and staying open to all ideas. If you're hearing from patient things like "I've been a patient of my LLMD for 8 years and I'm 30% better or I cured my Lyme but I still am fighting conditions C, D, E, K, P, S, R and Z,", RUN. LLMDs are WAY WAY too expensive to see for 8 years.
Posted by sutherngrl (Member # 16270) on :
Seek you are right, the jury is still out! There are no definetive answers where LD is concerned.
I'm just saying that I do know people that were very ill and were cured in 2 to 4 years on moderate and low dosing. Doesn't mean it works for everyone.
I am not condoning that any one treatment is better than another. Just doing like you said, keeping my eyes and ears open to all ideas.
The only thing that is for sure is that its a long road any way you go!
Posted by Pinelady (Member # 18524) on :
The only thing that is for sure is that its a long road any way you go!
You got that right. In so many ways..
Posted by TxLymie (Member # 20847) on :
Who is WC? Is that the author of Cure Unknown. I read most of that book but just don't remember.
Posted by Beachinit (Member # 21040) on :
I heard he took high dose ceftin twice daily for 4 years. I think it may have been 2 grams twice daily for all that time. My source seems reliable. I did not know about the starts and stops but I have thought for sometime that breaks and restarts somehow boost immune response to a little higher level each time. I see Dr B recently added lemon juice to supp list. Did he take it himself? I'm guessing yah.
Speculating for the fun of it,
Beachinit.
Posted by Richard1062 (Member # 19233) on :
TxLymie, I think WC is Wild Condor, who posted up above.
Posted by WildCondor (Member # 434) on :
Yeah WC is me... lol
Clarifying again...it took a year to start having good days. The first year was constant herxing. After 3 years I had my life back and was independent again but not cured. After 5 years, I had a significant improvement and moved on with my life and no longer needed antibiotics. Dr.B and I followed the protocol exactly, only thing that was tweaked was the Bicillin which was 4x per week at one point, as opposed to 3. I also did monoplace HBOT combined with antibiotics which is not listed in the treatment guidelines but at the time was a huge part of my treatment protocol. The doses I took were all adequate for Lyme, there was nothing extreme in there. In my opinion, if many of you think my doses were high then you are probably being undertreated.
I want to stress again how important it is to be on a combination of antibiotics, and how important the incorporation of Flagyl is to getting well. Slivers of pills wont get you anywhere...you can fry and egg fast or slow, wither way its got to fry! Lyme and co-infections are smart little creatures ....you have to outwit them, and treat adequately. People will say that they "cant take" Lyme doses, but IMO thats not true in most cases people just don't like, or know how to handle herxing. Supportive measures NEED to be in place such as anti-depressants, pain relief, sleep aids, hormones, everything.
Make sure your LLMD treats ALL OF YOU, not just one thing.
Keep fighting! Posted by CD57 (Member # 11749) on :
I think WC is right. I think that people on here are mostly on way too low doses and that's why people are still sick.
Posted by seekhelp (Member # 15067) on :
WC needs to smack some of these LLMDs around and get them on top of their games. Posted by nefferdun (Member # 20157) on :
I have been re-reading the book, Cure Unknown, and this is what she writes:
"He'd been on the antibiotic Ceftin for twenty-six months when, with all his symptoms finally gone, he decided to stop treatment cold. Slowly his lyme disease returned, but instead of resuming treatment at the first sign of relapse, he'd let himself fall far back into illness before starting the ceftin again. He repeated this cycle once, then again. 'After the third cycle, which produced the strongest herx I had in years, the symptoms never came back',Burrascano said".
Then she writes about herself: " I restarted the Ceftin and treated three months to the abatement of symptoms- then let myself crash. . . down, down, down to the bottom of the Lyme pit, again." She wrties anitbiotics like Ceftin only killed spirochetes when they were metabolizing nutrients but the attack caused many spirochetes to convert into cyste states where they were safe. When treatment is stopped and the adversity gone, they return to normal, multiplying and causing symptoms. So you waited until the symptoms were really bad and then hit them hard. It is important to make the dose high or it will only kill the weaker more "reachable germs, leaving a stronger, deeper infection behind."
She also treated with high dose ceftin three times allowing a complete relapse between and at the end of the third round was well.
This is one of the best books ever written on Lyme disease. Everyone should have a copy.
Posted by nefferdun (Member # 20157) on :
What I have never understood is why the third round was a success. Why didn't it knock it all out the very first time?
Are we just fooling around giving drugs like doxy the first go round and that just makes the spirochetes more resistant and entrenched because it is not powerful enough? Would it be better to use a high dose of the most potent antibiotic first?
It makes me wonder if long term treatment is really a good idea. Should we just treat until symptoms "abate" (does that mean they are all gone or just sort of gone?) and then allow it to become active again like Burrascano did?
I think you don't want to take anything that encourages them to take on the cyst form - even herbs. So they all come out of hiding, the coast is clear and they are wrecking havoc. Then you use the nuclear arsenal of drugs.
Posted by GloriaP (Member # 23255) on :
ummm just to point out how individual this all is and how one person's magic cure may not help many others: I read the book too and I believe that Ms W's kid(s) didnt do that plan.
One would think that if it was such a guarantee, why wouldnt a mother insist on the same thing for her kid?
I also recall somewhere in the book that the explanation was that you cant find all the hidden bugs the first round. So you get the ones you can then stop to "fool" them into coming out.
After 3-4 times there are so few left hidden that your body can deal with them (hopefully)
It sounds dangerous to me and as others mentioned---it all depends upon each person--other things you have and ways Lyme has damaged your body.
I do think that tiny doses will just make them stronger--it kills a few weak ones and then the stronger ones are left to make more---and that isnt good for any of us given how bugs can exchange information of resistance.
Ceftin vs doxy is an interesting question.Drs here in MO dont explain why they do doxy--is it drug company influence? Is it "better"?
Does anyone know really what will or wont have them go cyst form and what about immune systems too?? Maybe some work better with some drugs??
Posted by nefferdun (Member # 20157) on :
My point is, before your first treatment there is nothing the bacteria need to hide from so no need to form a cyst. If they just form cysts anyway, then why wouldn't they continue to do so, in which case no matter how many times you stopped and started abx there would still be the buried ones you never reached.
If they only form cysts in a hostile environment, then it makes more sense to pulse abx rather than taking it constantly. Or if resistance is a problem constantly change abx hitting it during the waxing stages rather than the waning.
They obviously need more research!
Posted by seibertneurolyme (Member # 6416) on :
The main advantage to doxy besides the fact that it is cheap is that it treats many of the coinfections as well. Used for ehrlichia or anaplasma and rocky mountain spotted fever and may even help some with bart or mycoplasma.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
I still wonder if Buhner's approach might not be better. It is my understanding that the herbs do eventually result in cysts but if one stays on them long enough the cysts will just die out on their own. Don't think anyone has really explored that option scientifically.
Bea Seibert
Posted by sutherngrl (Member # 16270) on :
Nefferdun is right, more research is needed!
There has not be any proof as to what protocol is 100% the best and most effective. There are ppl here that have gotten well doing Dr B's protocol, ppl that have done low dose to moderate dose protocols, mono therparies, etc and are well. Even ppl that swear they were cured with rife and other alternative methods.
So to come here and say you must do this or that or you just won't get well, is wrong. Where's the proof, besides of course own personal experiences, which we all have and they are all different. And a number of different approaches have been shown to work.
As far as the cyst form, thats another story. Do you take cyst busters consistently or do you take them periodically, or just once or twice during treatment.
All of our LLMDs have different protocols. Many of them are researchers and use protocols that they themselves have seen work. Fortunately some of us actually have LLMDs that have the sense to treat us as individuals, which personally I think makes the most sense.
Sorry but I just don't believe in one set way to treat every single human being. I don't think dosing is a one size fits all kind of thing.
And I don't think any one doctor or researcher has all the answers to the LD cure. If they did, we wouldn't be talking about this right now.
Posted by MariaA (Member # 9128) on :
There are also other ways that borrellia evades the immune system, besides forming cysts- so I"m always leery of people wanting to pulse in order to do the 'burrascano cycle therapy' effect. I think Dr B mentions the 'cycle therapy' in a powerpoint from a conference that's archived on the lymepa website. It's experimental. He mentions it in his slide as a final 'clean-up' effort. I don't think anyone does this during the course of regular therapy (ie stopping and relapsing intentionally) and I'm pretty sure from reading here and elsewhere that a lot of people have suffered very severe disease after having antibiotics stopped too soon (whether that's after 30 days of IDSA, or 6 months of monotherapy, or other undertreated sorts of situations).
Posted by MariaA (Member # 9128) on :
quote:Originally posted by seibertneurolyme: I still wonder if Buhner's approach might not be better. It is my understanding that the herbs do eventually result in cysts but if one stays on them long enough the cysts will just die out on their own. Don't think anyone has really explored that option scientifically.
Bea Seibert
Cysts that are formed by antibiotics will also die out eventually on their own if the antibiotic therapy lasts long enough. So it's not necessarily a really bad thing if you're on a drug that your body can tolerate long-term. There seem to be patients who need 'permanent' maintenance antibiotics after more aggressive therapy, and they seem to do fine as long as they don't stop antibiotics. I'd imagine that at some point their LYme would give up the fight- there just haven't been enough people on long-term 'maintenance' therapy who've been followed in any formal way, so we don't know what eventually happens. the assumption is that they take the drugs for the rest of their lives but if it's cyst-form issues or some other aspects of Lyme's ability to survive antibiotic that's at play, eventually the bacteria DOES have a lifespan and it will eventually die.
Also, there's that interesting finding in animal studies where they've found that with proper treatment, there may still be live spirochetes found somewhere in the autopsied animal, but they're no longer capable of causing infection in other animals. I can't recall whose study I'm thinking of.
Posted by nefferdun (Member # 20157) on :
I know they found spirochetes in the brains of people, after death of course. Borgdefer (sp) fed the brains of dead mice to baby mice to infect them with the most virulent bacteria.
It seems like the cyst might have a very long "shelf life". It is dormant, not really living but shut down waiting for "spring", like a seed in the ground. There are seeds from the pyramids that have been sprouted 3,000 years later. So I wonder if "life span" applies to cysts.
Posted by Pinelady (Member # 18524) on :
Yes thats why Dr. McDonald refers it to Syphilis in the movie UOS. In the T. Syphilis study the
That is why they are finally trying to find a way to break the biofilm that protects it. And right now some believe the only offense they have is to pulse the antibiotics.
Posted by CherylSue (Member # 13077) on :
Doesn't Dr. J pulse abx, too? I don't recall his reasoning, but I've read posts that say he does.
Posted by canefan17 (Member # 22149) on :
I do feel that I'm on too low of doses. I sometimes bump the dosage up without telling my LLMD. haha
Like he has me on 500mg flagyl/day when i pulse it.
I do 750 instead and will work my way up to 1000mg.
I'm not here to go into remission and then relapse again. Spent too much money and too many emotions to play that bullshyt.
Posted by seekhelp (Member # 15067) on :
But then you wouldn't be patient revenue for life for a LLMD.
quote:Originally posted by canefan17: I do feel that I'm on too low of doses.
I'm not here to go into remission and then relapse again. Spent too much money and too many emotions to play that bullshyt.
Posted by canefan17 (Member # 22149) on :
haha I don't think LLMD's are guilty of this.
They are on our side. However they still have to be careful when treating with high doses of abx's.
Lawsuits are a real thing in this country.
Posted by lymebytes (Member # 11830) on :
Everyone of us will get well a completely different way. Some on mono therapy, some pulsing, some on abx and some on combo's of abx and natural. Some on orals, some on IV, some on all natural protocols. Some in months and some in years. There is no one answer, if there was, this forum would be non-existent. Some quit tx and get well, some quit and relapse harder than ever.
I am for whatever works and that will be different for each person. I also know that herxing too hard can cause injury and even death if extreme supportive measures aren't in place,i.e, pain meds, anti-anxiety meds, etc. This according to my (very well known LLMd) in a conversaiton we had. So taking yourself to limits you know are too much, probably are too much. I have never understood the theory of putting a sick body under extreme stress (abx) and causing inflammation could make a person well. Even supportive measures may not work. I have horrendous pain that Morphine doesn't touch, making high doses impossible.
Not to scar anyone, but to just show that one protocol for all isn't the answer. One LLMd at a conference I myself have watched on DVD talks about another Md putting someone on what would be a "normal" dose of Rocephin, they knew it would be very hard for him as he displayed extremely stressful herxing on other abx, he died from the herx. I know someone personally who was put on a Cepholosporin IV abx and it was too much and she died. Other's report great progress and even getting well on one IV abx and stop and go on w/life. Other's report getting well on IV and stopping and relapsing. Some do cyst busters and do great, others have done cyst busters and regretted it terribly.
No one has THE answer for all of us.
There are a million ways/combo's to get well and most are stumbled across. A woman got well on Malarone suddenly. A man on Plaquenil alone, these are so off the beaten path, most LLMd's wouldn't think to Rx them alone.
Lastly, in addition to LD, many of us likely carry bacterias, viruses, fungus/yeast, metals and other unknown, undectable things. I have read of all the bacterias on the planet Md's are only familiar with 1% of them, that leaves 99% of bacterias yet to be discovered.
In the years I have been doing this and studying endless hours, I have seen people on mono therapy get well and I have seen people on high dose IV and every other known abx to man, struggle and not get well at high doses.
There are 300 strains of lyme that are known and who knows how many strains of co-infections. There are an endless list of symptoms and cycling through abx combo's may help someone discover a combo that hopefully works, or not.
The idea behind doing one abx as in Cure Unknown is to kill LD and assume cysts are formed. Stopping the abx, will bring out the cystic form and another round of an abx will kill again. It has been said by the third round lyme should be well under control.
All speculation. There is no one abx that works for us all and we just keep trying to hit a combo that starts working.
I say play a part in your health care, ask to try different things.
My son had a very severe case of LD that was hard for me to witness as his mom and he cycled abx at first and then pulsed some and finally ended up on Bicillin ALONE lastly and that was his drug he got well in less than a year of Bicillin and is off all abx and doing good. He did 2 shots a week to start and treatment was brought to end w/one shot per week and then off.
The one thing my son did that Dr. B says is a MUST is exercised, religiously and without fail. Dr. B has said it is more important than abx and not to expect to get well without an exercise program.
It seems to be proven true over and over, I knew another woman I know was on one abx 7 months, but she was a fitness fanatic and was well within that time.
My LLMd and one of my friends LLMd agrees....it is a crap shoot to find the right protocol needed for each persons specific strain. The possibilities are endless.
We simply are the generation of lyme patients that doctor's are learning from, being this disease has only been around 40 or so years. A hundred years from now when they will likely have a cure, they might look back and say our treatments were utterly ridiculous. But for now can only keep searching for OUR answer.
[ 02-22-2010, 02:20 AM: Message edited by: lymebytes ]
Posted by Pam Weintraub (Member # 15718) on :
I just happened to notice this thread. Nowhere in Cure Unknown does it say that this is the first and last treatment for Lyme disease for anyone. This is a misunderstanding of the text.
Speaking for myself, I used the pulsing method ONLY AFTER four years of aggressive treatment for Lyme and coinfections. After those years, I was able to push symptoms back to remission but only while still on treatment. Off treatment, I relapsed over and over again.
The final, pulsing technique allowed me, finally, to get off antibiotics without further relapse --and I have been off them now for more than six years.
The pulsing was recommended by Doc B ONLY for the patient who had already been aggressively treated, and was now completely asymptomatic while on treatment, in other words, for the chronic relapser --a patient like me.
This is all spelled out in detail in Cure Unknown: Inside the Lyme Epidemic, published by St. Martin's Press.
Hope this all helps,
Pam Weintraub
Posted by CD57 (Member # 11749) on :
i think the idea, like Pam says, is to treat aggressively and to get to asymptomatic...and then try it. plus its only good for lyme i think.
Posted by Pam Weintraub (Member # 15718) on :
yes, only for Lyme: after four years, my relapses were pure Lyme disease, no treatment for any coinfection had any impact on me anymore, as in the past. My babesia --once the biggest problem-- was gone and it was the Lyme, alone, that remained. The pulsing worked, I believe, because in stopping treatment for a long time I let all the spirochetes come out in motile form in force, and it was therefore possible to kill them.
But this was only possible because I started from a completely asymptomatic place.
Pam Weintraub Cure Unknown
Posted by 7seas (Member # 24697) on :
So then does pulsing NOT work at all for co-infections? And for Lyme, it works only after aggressive daily treatment?
Just wondering because my doctor has had me pulsing all meds since the beginning of treatment. I assumed this was the correct way to treat all the infections!
Has anyone had success with pulsing throughout treatment?
Posted by seekhelp (Member # 15067) on :
To quote a line from Return of the Jedi..."Only now at the end do you understand, young Jedi." "Tell your Lyme patients WildCondor was right."
My understanding the more I read here is there are just tons of LLMDs out there unwilling to toss the ammo needed to beat these diseases out of fear of liability. I believe TF stated this way back. She was right.
Posted by Katrina (Member # 15236) on :
Pam Weintraub
Thanks so much for posting. I have treated lyme with multiple antibiotic combinations for 4 years.
After the 4th year, it was finally discovered that I had babesia duncani which was never treated.
You said that babesia was a big problem for you at one point.
Just wondering how it was that you treated this coinfection.
I am on 1.5 years of treatment and improving. I have tried Mepron, Malarone, Riamet and artemesia.
Also how long did it take to get rid of the babesia?
Thanks so much! If anyone else knows this answer, please pipe in. I have not read Cure Unknown. Wish I had.
Katrina
Posted by nefferdun (Member # 20157) on :
Pam Weintraub, thanks for clarifying that. I was not sure about the co-infections.
I just spent weeks studying Cure Unknown, and making a "book report" to give to my son, who is graduating from college this spring, premed. I mainly explained the history behind treatment so he would understand the controversy. I plan to also give it to my GP next time I see him. What an eye opener.
Posted by Keebler (Member # 12673) on :
- PAM,
Yes, thanks so very much for the clarification - and for keeping an eye out here. Your contribution is greatly appreciated. -
Posted by Pam Weintraub (Member # 15718) on :
To all: Everyone is different. There are so many strains of the Lyme spirochete; alternate spirochetes; and various strains of coinfections, some of them still controversial or unknown. People have varied immune profiles, adding more complexity.
In MY case, I believe I was lucky to have classic northeast strains of babesia and Lyme, period... I was treated for babesia with mepron and zithromax over the course of a couple of months, and that really did get rid of my babesia symptoms.
I am convinced, and Dr. was convinced, that what continued to dog me for years vis-a-vis relapses, was Lyme disease and only Lyme disease. I had no response whatsoever to medicines for babesia or even other coinfections --eventually my Lyme was pushed to remission again and again with amoxicillin, but I relapsed whenever I stopped treatment, thus the trial of pulsing with ceftin.
This did the trick for me. It is an individual story and only an anecdote, which I state in my book. I state there, and I hold now, that it may have little meaning for others, but the book was my memoir, and that was part of my story.
Posted by LymeXtu (Member # 24590) on :
Just wanted to say how much I learned from Cure Unknown. My 12 yr old son is currently under treatment and I am happy to have a way to thank Pam Weintraub for the knowledge I gained from her book, it has helped make this awful experience just a little easier on me. Anyone going through this should pick up a copy of it.
Posted by lululymemom (Member # 26405) on :
When I first joined this forum, I found this thread really interesting and thought I would revive it for a bit. It's interesting that they talk about IV Ceftin(Cefuroxime) when it's actually Ceftriaxone that is IV. So I'm still a little curious if it was IV or orals that Dr. B. and Pam Wientraub were on.
As per Beachinit:
"I heard he took high dose ceftin twice daily for 4 years. I think it may have been 2 grams twice daily for all that time. My source seems reliable"
Posted by Abxnomore (Member # 18936) on :
My understanding is that it was oral ceftin.
[ 01-13-2011, 09:54 AM: Message edited by: Abxnomore ]
Posted by lululymemom (Member # 26405) on :
That's what I thought too... Posted by METALLlC BLUE (Member # 6628) on :
That is correct, it also makes very good sense if you understand the mechanisms biologically behind how borrelia burdorferi behaves.
Attacking borrelia constantly until symptoms improve, then backing off, and then assaulting again allows the borrelia spirchettes to grow "slower" overall, than the attack vs rest periods to permit borrelia in sequestered areas to spring into activity and for borrelia cysts to activate back into mobile form.
I am actually using this technique right now since I've finished all other methods. I'm using Tetracycline instead. Co-infections make things much more complicated, and that is where the issues makes this concept difficult to approach.
Posted by migs (Member # 16496) on :
It's important to note that going off abx and allowing for relapse is helping your body see the invader and build it's own defences as well. It's like getting immunized for Hep B...one exposure isn't enough for your body to figure it out but a few times over and it finally produces a proper arsenal.
The last time you go nuclear with your Ceftin, your body has gone through a few cycles of building antibodies and you are hitting it with an all out assualt of Ceftin, along with a peak immune response from your body.
That method obviously can work well but can you find a doctor to prescribe you 3000mg of Ceftin daily for an indeterminate period of time? Probably not...you'll have to do it alone. Then can you eat enough probiotics to fend off the yeast and make sure you stick to the program? Tough tasks.
Posted by lululymemom (Member # 26405) on :
Yes, I do believe he took doses of 1500 mg each time, twice per day. It would be very hard to take that high of a dose without being properly monitored by a doctor.
Posted by Hambone (Member # 29535) on :
How sick was Dr. B? He looks great now. I never knew he had Lyme until yesterday.
Posted by Abxnomore (Member # 18936) on :
He doesn't have lyme now. This was many years ago. Don't know exactly how many but it could be 20 years ago.
Posted by 365SunnyDays (Member # 29969) on :
Thank you Lululymemom for reviving this thread! Answers so many questions that I had.
Posted by lululymemom (Member # 26405) on :
You're welcome, Sunny, I think it's interesting because he took such a unique approach to treating this illness.
Posted by Shahbah (Member # 28735) on :
hum, this approach does not seem to be honest... unless ceftin acts as an anti inflammatory. In this cas, he had a strong immune systme that took care of the infection by itslef, thus a great inflammation (herx), then ceftin was used to lessen it... Has anybody else been cured using the same protocol? The other explanation i think of, is he had chronic fatigue, which apparently can go into remission after 4 or 5 years...
Posted by WhitneyS (Member # 25666) on :
I don't beleive in Chronic Fatigue. I beleive in it as a symptom, but not a diagnosis. I dont think someone would spontaneously feel tired all the time-- I absolutely think 100% of CFS people are undiagnosed with other infections or medical condtions, much like Lyme.
Posted by lululymemom (Member # 26405) on :
[QUOTE]Originally posted by Shahbah: [QB] hum, this approach does not seem to be honest... unless ceftin acts as an anti inflammatory. In this cas, he had a strong immune systme that took care of the infection by itslef, thus a great inflammation (herx), then ceftin was used to lessen it... Has anybody else been cured using the same protocol?
As it appears in the thread here, Pam Weintraub, author of Cure Unknown, has also used this method of treatment. She even discusses it here.
Posted by phyl6648 (Member # 28522) on :
My doc told me he had two lyme pts that got well on their own. Like it just left. He had no explantion Hoping that will happen with me..
He is not a LLMD but seems knowledgeable about lyme but unsure of treatments. He feels different treatment for each person, some antibiotics others not. I think I am one of the nots..
Posted by nefferdun (Member # 20157) on :
I wonder how long Pam and Dr. B took Ceftin after becoming symptoms free. Did they take it for two months past the symptom free date, like we are advised to do?
I also wonder how long it took them to achieve remission each time. And how long was it after quitting therapy that the disease became active again.
It is important to realize this treatment only works when a person can remain completely symptom free while on abx. You also need to be free of co-infections. Most of us are not there yet.
I am treating babesia d now and my other symptoms are undercover. I expect the other infections will come out when the babesia is taken down. I believe I should then concentrate on eradicating the erhlichia and bart.
Then with only Bb left try this approach with Ceftin.
Maybe I will get lucky and the other infections are already taken out and not just lurking waiting for their opportunity.
I doubt it.
Posted by Abxnomore (Member # 18936) on :
I think it's silly to speculate about how the number one doctor at the time cured himself. He's probably still number one, only he doesn't treat anymore but is doing research.
Firstly, he's a doctor and has access to knowledge, medical testing and medications that we don't have.
To say he may have had CFS is really out in left field. He is the first LLMD to write treatment and diagnostic guidelines for Lyme disease and co-infections.. I think he knows the difference between Lyme and CFS, not to mention that he treated many thousands of patients in his day. Also, in almost all cases CFS is untreated or under treated Lyme disease.
Posted by renny1985 (Member # 25222) on :
Does anyone know where to watch the mystery diagnosis episode? I remember seeing it years ago and thinking, oh gosh, wouldn't it be crazy if this is what I had all this time (I had been to 30+ docs for my symptoms, undiagnosed for 15 yrs).
I would love to see that episode again... Now that I know it is Lyme...
Posted by migs (Member # 16496) on :
I looked for that episode but could never find it.
It was Wild Condor's story...she used to be a member here and was a patient of Dr.B...cured also.
Posted by Hambone (Member # 29535) on :
It's Mystery ER. Not Mystery Diagnosis (although there are two Mystery Diagnosis episodes about Lyme...one with Doug Posluzsney and one with Jackie Spar, the teenaged girl).
This is only part 1. I think you can click on part 2 from the link after watching part 1.
Posted by bcb1200 (Member # 25745) on :
UP...a very good post. Remember that there is no single cure, but this has good info / ideas to try once you are symptom free (and if you relapse with lyme proper (no co-infections)).
Posted by nonna05 (Member # 33557) on :
OK It's been a while for this one...Any update ?? I tried to see Wild Condor's,couldn't get through. What's the take on it now. I don't remember Keebler or TuTu on post,any input..
I've yet to see Ceftin or here of it since diagnosed... Never tried it. Has anybody lately?
Am I so sick and tired of being sick and tired that my body and or mind is stuck????
I've talked about this with 4 Dr's one a LLMD and another not so far off from being one. They all say no ... It is the illness and it is happening and at least 2 have given hope for feeling a lot better, they also thought I would have responded different by now.
Posted by Keebler (Member # 12673) on :
- I forget who posted this information but I recently saw a note about how Pamela Weintraub has a follow-up book due out very soon.
I'm too tired to check her website but that detail may be there. Links are above in previous posts. -
Posted by faithful777 (Member # 22872) on :
I am on high doses of ceftin but also on IV Clindamycin and getting better slowly. I take more orals that get switched up periodically.
Posted by LymeNut (Member # 40314) on :
Pam Weintraub's revised Cure Unknown is coming out at the end of June and will have 25 additional pages.
Posted by Lymedin2010 (Member # 34322) on :
I just shook her hands today & she again reiterated that it will be out in e-book. It is basically an addendum as the final chapter in her book.
I got her autograph too, yippeee. We can't thank her enough for legitimizing our experiences and cause in her book. Now dammit, where is the follow-up blockbuster movie starting Johhny Depp?
Posted by Notti (Member # 43843) on :
This is an old but fascinating thread, so I want to post a link to a video where Dr Burrascano talks about 'cycle therapy' during his presentation.
Joseph J. Burrascano Jr. MD. Lyme Borrelisosis: Part 2, NorVect 2014
![[Smile]](smile.gif)