Recent Dr Burrascano Interview On The History Of Lyme

https://youtu.be/bzu0weofvm8?t=6256

And like what Dr. H said in that video I posted above, even though Malarone and Mepron not effective as they once were, might be worth trying these antiparasitics with Dapsone. I don't know if he recommends Mepron with Dapsone though, anyone reading this you'd have to look into that first before taking, as there may be an interaction with the drugs. I just know he said he's having success using Malarone with Dapsone.

Also, you start feeling toxic, the symptoms and herxing overwhelming. Take 2 or 3 days worth of breaks, maybe even week, then come back and hit the infection hard again. You'll find you feel even better on the 2nd or 3rd time you've pulsed these drugs, just like what Dr. B suggested treating borrelia.

I suspect as some patients get closer to remission, it might be a good idea to hit the infection down the road like a month from now, 2-3 months from now, just to make sure it's completely in remission.

As time goes on Dapsone toleration does get better, but you have to be really careful with this drug. Super high dosages of Folic Acid, Alpha Lipoic Acid and Milk Thistle, even Liverite Liver Aid which Walmart carries for only $12. As well as taking lots of probiotics!!!

Post Edited (Charlie55) : 1/6/2019 12:23:31 PM (GMT-7)

Girlie, i hope your kidney function will be fine. I had elevated transaminases while i was on rifampin.

Today i took the first 600 mg at once... and i can handle this feeling of dying, panic attack... within one hour....

Girlie said...
Charlie - if he said he’s having success with dapsone and malarone - then can we not assume that you could sub in Mepron - Both are atovaquone.

You're probably right, I'm just being cautioning on what drugs to mix...

Girlie said...

I’m trying to recover from my past two weeks.
But I don’t know how much of what I’m feeling is toxins from die-off or kidneys.

I don’t think I’m going to do cycle 6.

It can be brutal, this is another level of treatment mixing dapsone with other drugs, the herxing and toxins from the die off can seriously make you feel really bad!

I'm don't feel too bad, but I can't imagine what a patient may feel like if they're just in the beginning or middle of treatment, then they hop on a powerful protocol with Dapsone. I think the payoff in the end will be well worth it, considering what Mandy Hughes went through and what state she's in today, very happy and living life.

I think in a lot of lyme patients minds, when you herx or feel so toxic, first thing you do is worry about breaking something inside your body. I'm not so sure, but everyone should be careful regardless, a few days off, few weeks, maybe a month, then go back on. Give as much time to your body as it needs, I firmly believe into listening your body.

Baking soda water drinks, drinking nothing but water, sitting in hot bathtub or sauna, detoxing with herbs. Vegetable shakes... Liverite Liver always made me feel better a lot better, along with baking soda.

Just wanted to jump in and say thanks to everyone on this thread.

This has been one of the most useful threads I've seen.

I just recently realized how ignorant I am on Lyme Disease history.

The politics, the treatments, etc.


My current LLMD actually worked under Burrascano in the past so I'm thinking of asking him a few questions in my next visit.

1) Why aren't we we doing cycle therapy
2) Why is treatment taking so long?
Burrascano said he had close to 100% success with having 0 symptoms for at least 3 months after 4-5 cycles of heavy antibiotics + Probenecid. Did we find Lyme became more virulent, or coinfections have become more prevalent or more virulent? I never hear of people beating late stage Lyme that quickly nowadays. Would be really interesting if a journalist or something could write a book about those Burrascano patients and how they are doing now.
3) Why haven't we used dapsone?
4) Why have I never really used the standard go-to "Lyme antibiotics"? I never did doxy. Never did amox. Never did rocephin. My first LLMD put me on zithro and didn't want me on it for more than a couple weeks. She believed antibiotics don't work for Lyme. I think I read the same thing in one of the Horrowitz books. I believe he was about to get about 99% of his patients into remission with antibiotic combinations, but I think he said 99% of them relapsed later and that's why he added herbals. I think she interpreted that as we should only do herbals, but maybe she made me miss an earlier chance at it. She was a newer LLMD and I didn't know that at the time. Afterwards my current LLMD has put me on xifaxin because he said it could work for neuro lyme due to the gut brain connection. I think xifaxin did actually help with that but I took it at a time where I wasn't really keeping a symptom journal so I'm not sure. I've also done bicillin shots which I think I responded to well to and helped with constant coldness. Then he had me alternate between alinia and tindamax as cyst busters. Both of which seemed to help. But I just find it interesting we never tried the "go-to's" on me. He put my wife on Doxy and she had big improvements with it. She has a much more mild case of Lyme that she got from europe. It freaked her out before but was never seriously disabling. She tended to have like weird 3 or 4 out of 10 pains that didn't last long and has had it for years without any major disruptions to her life. I think he concluded that Doxy would work for her but not for me. I forget why. Either he had some correlation of WB bands to which antibiotics work or something else.


Granted I'm not sure if Lyme is really by biggest contributor to my symptoms now or not.

I tend to have plenty of energy, and don't crash after exercising or exterting myself. I used to before so easily.

But I have pretty much only neurological / nervous system issues I think.

And I've found my self feeling better after doing EDTA IVs, and after doing Gammistan IM (Intramuscular Immunoglobulins). I also take heparin injections with both so even the heparin can be helping.


Also I wanted to comment on whether or not "full cures" exist.
From everything I've read I haven't heard of 1 single person (please correct me if I'm wrong) who totally cured themselves of Lyme & Co to the point where they could push themselves too hard & eat bad food like normal healthy people & go through super stressful situations without a relapse when going through DR provided treatment.
But I have heard of people who did the BVT treatment and have gone years without caring about diet, tested negative for EBV, CMV and all those other things, and feel 100% themselves.
I have pretty much convinced myself to do BVT after I handle the lead poisoning scenario. I don't care if it hurts as long it is a cure and not just a remission that could come back at full force when some inevitable stressful event comes up.

Lymelearner said:
“1) Why aren't we we doing cycle therapy
2) Why is treatment taking so long?
Burrascano said he had close to 100% success with having 0 symptoms for at least 3 months after 4-5 cycles of heavy antibiotics + Probenecid. Did we find Lyme became more virulent, or coinfections have become more prevalent or more virulent? I never hear of people beating late stage Lyme that quickly nowadays. Would be really interesting if a journalist or something could write a book about those Burrascano patients and how they are doing now.
3) Why haven't we used dapsone?
4) Why have I never really used the standard go-to "Lyme antibiotics"? I never did doxy. Never did amox. Never did rocephin. My first LLMD put me on zithro and didn't want me on it for more than a couple weeks. She believed antibiotics don't work for Lyme”


1) Do you mean pulsing? If so - most llmd’s generally don’t do pulsing - except maybe with the cyst busters.

Or do you mean cycling - as changing the antibiotic protocol every few months?

Protocols should be changed as you treat the different infections - ie Babesia, Bartonella, etc
Also if you’re not responding or tolerating a protocol - it should be changed/tweaked

2) 0 symptoms after 4-5 cyclesof treatment? Cycles being how long in duration? A month? If so I call bulls#*%
Unless he is talking about acute infection - but not chronic Lyme.

3) There aren’t a lot of llmd’s prescribing Dapsone from what I’ve seen/heard. So I’m not surprised that your LLMD didn’t.

4) if your previous LLMD doesn't believe abx work then it’s good that you changed.
I go to a LLMD because I want to do abx. If I wanted to treat herbally only - then I’d go to a LLND.

---

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

lymelearner said...


1) Why aren't we we doing cycle therapy

Like I said, there's been an absolute miscommunication with the top ILADs Doctors and what the lower level LLMDs are using. Then when I question what some of the lower level LLMDs are doing for treatment, I get chastised for it...

Doctors have major egoes and they all underestimate this disease, the LLMDs in Michigan aren't using strong enough dosages or the proper medications to treat resistance coinfections like Babesia. Let alone treating biofilms with the right supplements.

This is Life, everything is imbalanced, every Doctor isn't created equally, despite what some lyme patients are saying. I've been dealing with this disease for 10 years, a decade now, I've seen what's been going on and it's not good...

Despite Dr. Bs success with his own protocols, I suspect there aren't a lot of other lower level LLMD anywhere near his success rate. He always treated aggressively, just like Dr. J, with IV antibiotics and strong dosages of oral antibiotics... He stopped his practice because he didn't want to end up like Dr. J, being taken to court, lose all the money he has in lawyer fees, and then lost his license. Remind you, these top tier LLMDs would use IV antibiotics then trick off with orals.

IV antibiotics are $5k-$10k a month, this throws flags for insurance companies who later report the LLMDs to the CDC..

lymelearner said...


3) Why haven't we used dapsone?

I suspect liability, remember so many lower LLMDs still aren't protected in many states. LLMDs are probably worried about the side effects, all it takes is one lyme patient to have a severe side effect, then the LLMD gets reported or sued, then makes the news...

lymelearner said...


4) Why have I never really used the standard go-to "Lyme antibiotics"? I never did doxy. Never did amox. Never did rocephin. My first LLMD put me on zithro and didn't want me on it for more than a couple weeks.

Zithromax is basically useless unless paired up with plaquenil for the treatment of Lyme Disease... If she read Dr. H's book, she failed to use his protocols in her own practice....

I'm telling you, this has been going on for decades now, lower level LLMDs that do a little research, then either misinterpret the information or just make up their own protocols because they're egotistical or underestimate this bacteria's ability to adapt, along with Babesia and other coinfections.

Again, just like Dr. B said, many Doctors are setting up patients for failure not using aggressive treatment in the beginning. I suspect Dr. B even meant LLMDs too, but he's not going to say it... He did say he cringes when he sees this, hint, hint!

Like Girlie said, it's been quite a few years since Dr. J first stumbled onto Dapsone... The word has been out on Stevia and Xylitol for quite some time.

Statistically speaking, how many LLMDs are following these new breakthrough treatments? Addressing persister cells or biofilms? Not very many!!! I can tell you that much after reading the forums, talking to other patients, as well as my own experience with LLMDs in my own states.

lymelearner said...


She believed antibiotics don't work for Lyme. I think I read the same thing in one of the Horrowitz books. I believe he was about to get about 99% of his patients into remission with antibiotic combinations, but I think he said 99% of them relapsed later and that's why he added herbals. I think she interpreted that as we should only do herbals, but maybe she made me miss an earlier chance at it.

That's scary if she thinks that, Dr. Rawls also repeats that on his website. Then patients start repeating this stuff on the forums like it's written in stone, I've seen it with my own eyes, even with Dr. K who has very questionable treatment that has very little scientific evidence to back it up.

https://rawlsmd.com/health-articles/when-to-consider-antibiotic-therapy

lymelearner said...


There is little consensus, however, on antibiotic use for chronic Lyme disease. At present, there are no studies showing benefit from long term use of antibiotic therapy for treatment of Lyme disease and the practice is not condoned by the conventional medical community.

Welcome to the world of Lyme, where every Doctor has their own set of protocols and beliefs, yet still call themself a Lyme Literate Physician.

Look, even when herbs have shown to work on biofilms in labs and vitro. We still have herbalist(Rawls) repeating nonsense that Stevia won't work because it doesn't absorb intp the gut properly. As well as another Herbalist(Stephen Buhner) saying biofilms aren't dangerous. Yet you look at what Dr. H and Dr. J are using, they're using biofilm busters(stevia & xylitol) and they're working, despite what the Herbalists are saying.

Stephen Buhner said...

I am not a big fan of the biofilm hysteria that is common among the lyme community right now. ALL bacteria form biofilms. It is just a grouping of bacteria together in one location and the formation of a kind of rigid structure, similar to coral formation in the oceans, that they use to protect themselves. It is no more dangerous or important than the bacterial ability to use efflux pumps to remove antibacterial substances from their cells or to use the immune system itself to hide from assault. Most herbal medicines are effective against biofilm formations just as are most immune systems. A biofilm may slow down effectiveness of immune response or herbal antibacterials but it does not stop them. It is not the terminator of bacterial protection. Biofilms have been around for eons and plants and immune systems have developed mechanisms for dealing with them. I would not worry about them as of being of particular importance in becoming healthy.

I hate to say this to you and others lymelearner, but picking the wrong LLMD or believing in the wrong set of protocols or treatment can make this disease harder to treat, even cost you your life.

I never had a hard time interpreting what Dr. B, Dr. J and Dr. H were saying in the Lyme documentaries or their presentations, others lyme patients and LLMDs I suspect just don't have the ability to understand this Disease properly. So they pick out specific things what they hear, then twist it to their liking to back their own beliefs. How many religious people do this with the Bible?

I hate to break to you, but you probably picked a Doctor who is tribalistic to one side of treatment for Lyme Disease. There's thousands of people that only abide to rife machines, only treat with herbs, only treat with antibiotics etc...

I have been warning lyme patients about this for the longest... I suspect a lot of these sketchy treatment protocols have without a doubt cost many people's their lives!!!

What happens when you throw thousands of dollars into herbs, rife machines, ozone therapy, glutathione, hyperbaric oxygen therapy.... But then later find out it's done very little for you and you have very little money left for antibiotics or to find a quality LLMD? I suspect many have committed suicide just for this same reason, I know it's happen with AIDs, I've heard plenty of stories: Tommy Morrision and Greg Louganis. Tommy, who didn't believe he had aids because of conspiracy theories surrouding AIDS and the other Greg, who believe into the whole mold issue that kept his AIDs chronic... Sound familiar?

Other problems come in, when these supposed LLMDs and Herbalists even get influenced by the their own books and supplements they push. Bottom line, if you're a herbalist, you're going to have a bias view on pharmaceuticals and try to push the products you sell. If you push rife machines, same mentality. All these people are going to have a bias opinion because of the books they write and what they sell.

Why not incorporate all of these protocols to treat this multisystemic infection?

I've found low priced herbs on Etsy, same price, the 1/3 of the price that Green Botanicals. Rife machines costs upwards of $3,000-$4,000, I noticed that a $30-$40 TENS unit that sends electric impulses into the muscle works just as fine, which seems to drive the bacteria out of deep tissue for me.

Sadly, many Lyme patients are getting taken advantage of, many will never admit, and many are still so caught up in their own beliefs and protocols, they'll never accept anything new to their protocols because so many products have failed to work.

lymelearner said...


Granted I'm not sure if Lyme is really by biggest contributor to my symptoms now or not.

Bottom line!!! You should be using a wide variety of herbs and/or pharmacteutical drugs that cover a wide range of coinfections, persister cells, and biofilms.

That's what the top LLMD are doing lymelearner. Stevia and Xylitol/Lactofferin is for biofilms, Dapsone for Persister Cells/Babesia, Daraprim for Babesia, along with other antibiotics like zithromax/doxy/minocycline for intracellular compartments, etc...

lymelearner said...


And I've found my self feeling better after doing EDTA IVs, and after doing Gammistan IM (Intramuscular Immunoglobulins). I also take heparin injections with both so even the heparin can be helping.

Cool, I bet it does work, if you can get something like EDTA in intravenous form, but it's probably not cheap, compared to a SweatLeaf Whole Leaf Stevia Concentrate Tincture that only sells for around $9-$12 on Amazon and other stores.

charlie in regards to thc, part of the reason it makes you feel better during abx is it has been shown to lower t cells, and in that way is immunosuppressive....so youre immune system doesnt go crazy chasing the blebs and die off toxins....there is a facebook page with over 6000 users using cannabis to heal lyme....alot of them are abx and iv veterans who were still bedbound....while smoking/vaping adds in reduction of symptoms thru immunosuppression, when ingesting the full spectrum cannabis oil w thc you get the anti fungal virus bacteria effects of the plant....its among the only things to kill mrsa....now youre seeing the cbd craze, and while it has use, the legal cbd is from the hemp rather than the flower, and sooooo much more stems need to be processed to get a usable amount...the cbd from the flower is soo much better, but it has thc and is therefore illegal in most of the states as you know....cbd can mess with people with cns involvement for some reason, but with thc is great for sleep and short term normality...when eventually it is made legal itll be interesting to see the medical testing with it

the CBD oil is usually from the hemp plant instead of the marijuana plant. (flowers as well)

It's different plants.....not parts of the same plant.


The CBD oil I used was good quality, organic. It did nothing for me. - except give me heartburn.

---

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

Actually it was acid reflux that it caused.

And it was definitely the CBD oil.
It was a concentrate sticky thick substance - dosage was measured in “grains of rice”


I’m not adverse to trying the marijuana. Should prob grow my own though.

---

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

It didn’t do anything for me anyway - so no point in trying it in another form.

Marijuana might be good for symptom relief though.

---

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