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-therapylymelearner 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.