Probably the most interesting news that any media outlet should of shared with the whole world. Instead of the garbage that was just relayed from New England Journal of Medicine to Forbes and other organizations
Last October it was just entering 2nd stage trials, we need to press our government to get this passed this year!
Someone honestly should start up some type of signature thing!
As the one article stated with Dr. Sapi, Stevia worked great, so did bee venom.
But as always, how do you get Stevia to the targeted source. I'm sure consuming it does nothing! Wondering if this CZ-1-99 will have to be used intravenously in order for it to work???
In back of my mind though, thinking of the Embers Study and how that was delayed, I personally dont want to get my hopes up to soon. Imagine how this CZ-1-99 could change the autoimmune drug industry that treats ALS, MS, Lupus....
If this drug does completely work, curious to see what happens to the lieing ass members of the IDSA. Proof will be in the pudding huh?
Posted by Jordana (Member # 45305) on :
Actually Sapi didn't seem that excited about Curza. I mean she said it was "60 percent more effective" but she also liked other compounds.
I think Sapi is looking for alternatives to antibiotics completely. She has Lyme and could not tolerate antibiotics; I don't know where I read that she felt she was at about 85 percent after 18 months of Cowden. She did that and IFR saunas.
Posted by Muscle Car55 (Member # 34707) on :
quote:Originally posted by Jordana: Actually Sapi didn't seem that excited about Curza. I mean she said it was "60 percent more effective" but she also liked other compounds.
I think Sapi is looking for alternatives to antibiotics completely. She has Lyme and could not tolerate antibiotics; I don't know where I read that she felt she was at about 85 percent after 18 months of Cowden. She did that and IFR saunas.
60 percent is still pretty amazing, considering some people can't tolerate flagyl or tindamax, even minocycline which a lot of people are getting better on.
This drug will change lives regardless...
Dr. Sapi is brilliant, I love her work. But honestly unless you have a way to deliver a biofilm buster and antibiotic to the source at the same time, these natural supplements mentioned in some of her studies are useless "to us!" For instance Nattokinase, lumbrokinase, stevia, bee venom. There's people on here thinking if you take stevia by mouth, it's going to be deadly enough for the bacteria in the blood stream. It's just not going to happen, it's a waste of money.
If this CZ-1-99 could be delivered intravenously, it may blow away any treatment currently available. That's why going down the synthetic route may be more useful.
The Cowden Protocol will fail for most people, especially people with neuro lyme and lyme where it's deep within the bone and nervous system. I honestly don't even find the logic in using something natural anymore, after understanding this bacteria. Well I find the logic of finding a natural biofilm buster and incorporating it in a drug, but as far as the natural route for us patients. We've all been down the road, no one's making any remarkable progress or everyone would be talking about it. If Cowden protocol is so great, why aren't most LLMD using it?
Chances are, Curza did probably use something natural, but they've figured a way to turn it into a potent drug that may absorb into the system better, especially if you take it through IVs.
This is what I know, a young woman named Mandy Hughes who had Lyme for 10 years and went on intravenous antibiotics for 7 months and she reached remission. Penetration is definitely key, along with the antibiotic you pick and "when" you use it. A lot of people take orals then take IVs because they haven't improved, it tends to be the last route LLMDs take, but this is the wrong order. A lot of people then go on a tangent and say there's no difference between orals and IVs. Pisses me off when the say that, so untrue!
But, it does makes sense why they would think that and why IVs don't work sometimes. Both the wrong antibiotic and the way it's delivered may be just causing the bacteria to go deeper into your body and making more self defense mechanisms, like biofilms and cyst form. I think we all need to think of this bacteria as a human being. What do we do when a hurricane or tornado rolls through our neighborhood, do we stand in it's way and get killed, or do we go in hiding. This bacteria is a living organism, it wants to live. And it can communicate too, through chemical signals called "quorum sensing." Chances are the first bacteria that gets hit with the antibiotic warns the other bacteria, so we don't make any progress. Makes sense right?
Dr. B has stressed how important it is to use IVs in the beginning. From what I've read and my own experience in Michigan, LLMDs will only use IVs for the very sick and tend to use it as last route when all else fails. This is probably why the aggressive LLMDs we know have better outcomes, such as Dr. J, Dr. B and Dr. C From my own experience in Michigan, we're in trouble, because only 1 doctor in my experience is educated on how and why certain antibiotics work.
Most progress I've ever made is using Flagyl! Instantly improved 50% within a week, compared to a year use of weak antibiotics like Amox or Doxy that Dr. Z gave me. I'm still pissed that many of these supposed "Lyme Literate doctors" are even using these useless antibiotics unless they use a flagyl or tindamax. Doctors and scientists still can't understand why these antibiotics work, could be how our body absorbs into our system better and penetration, could have to do with addressing multiple infections at once, considering coinfections. I know microbiologist stressed how effective roxithromycin is for neuro lyme patients.
What I'm led to believe, I'll stress this again, is using a strong antibiotic along with a strong biofilm buster and strong penetrable system at the same time. Or we'll keep failing at developing a cure.
That's through my own experience of trying to understand this very complex disease. As always, I could be way of base. But I'm excited about this new drug. Regardless of how effective it is for Lyme, it'll probably still be an incredible drug to use for resistant MRSA and turburculosis, which will save lives. As we all know and think, borrelia is much more complicated than those bacterial diseases.
Thanks for chiming in Jordana, kind of sad, think the forum really has dropped off.
[ 04-14-2016, 11:54 AM: Message edited by: Muscle Car55 ]
Posted by Jordana (Member # 45305) on :
Maybe, maybe, maybe.
"Neurolyme" is just a name. In chronic Lyme the stuff is all over us and in us, everywhere. Lyme doesn't care where it lives, it's just looking for collagen. It likes proteoglycans and can't tell the difference between a knee and a nerve. Tissue penetration is important but so is persistence; IV antibiotics only increase penetration because there's more of it going directly into the bloodstream.
I think the rationale for doing orals before IV is to knock down some of the low hanging fruit before you go in for a heavy kill. It should reduce the herx, or so goes the reasoning. In studies and in practice these drugs do work; orally or IV. My favorite Lyme doc is Dr P in ct; brilliant guys, saved his father with abx. He prescribes doxy and zith first, then moves on to tetracycline and zith -- that's it, for most of his patients.
He also does a lot of pulsing and keeps it up for years if necessary.
Most natural protocols aren't about the spirochetes. What they do is keep cytokines steady so that borrelia can't trick the immune system. They also protect the brain and collagen reservoirs so those are good things. I think you just have to keep doing it for a long, long, LONG time.
I was just reading someone here the other day who regretted going for the very aggressive approach first;they said their bodies were all messed up from the heavy duty medicine. And I heard from someone else who said they almost died from strep because of all the abx they had taken previously.
The big IV docs do have successes, but they also sometimes leave people in the same or worse position than when they started. I just think there is no way to get rid of an entrenched infection except over years of being consistent. In fact it seems like the shorter the recovery time; the sooner the relapse.
Posted by TNT (Member # 42349) on :
quote:Originally posted by Jordana: My favorite Lyme doc is Dr P in ct; brilliant guys, saved his father with abx. He prescribes doxy and zith first, then moves on to tetracycline and zith -- that's it, for most of his patients.
He also does a lot of pulsing and keeps it up for years if necessary.
Do you mean he switches to a tetracycline other than doxy and mino, such as sumycin?
Posted by Jordana (Member # 45305) on :
No -- straight up tetracycline, old school. There is something about how the cyclines bind to proteins and according to Donta and Dr P tetracycline is just better for that reason.
Posted by Jordana (Member # 45305) on :
Muscle Car 55, I wouldn't discount Bee Venom out of hand. It's got some science behind it and it's naturally an intravenous delivery.
It paralyzes spirochetes - actually what DrK says is that it makes them more susceptible to medication because they can't change form to avoid it; while also becoming suddenly detectible to the immune system.
I agree with you about Stevia though. It's metabolized in the gut as sugar. Although if you have borrelia in the upper gut you might get rid of those.
Posted by Jordana (Member # 45305) on :
Bee venom herx is hard...i am curious about curza but what are the side effects.? Aplastic anemia? Rectal bleeding or worse...like flagyl is a known carcinginic. ..i am still eating tinidazole. ..so i am gonna do some rocephin ....does that have bbb penitration?. ..project is using ultrasound to break biofilm then hits with e oils and frequency. ...when will curza be ready?...how do you get on a trial....?
Posted by Muscle Car55 (Member # 34707) on :
quote:Originally posted by Jordana: "Neurolyme" is just a name. In chronic Lyme the stuff is all over us and in us, everywhere. Lyme doesn't care where it lives, it's just looking for collagen. It likes proteoglycans and can't tell the difference between a knee and a nerve. Tissue penetration is important but so is persistence; IV antibiotics only increase penetration because there's more of it going directly into the bloodstream.
What you mean neuro lyme is just a name, it refers to the neurological manifestation of the spirochete. Brain, spinal cord and nerves!
For me this bacteria went straight to my joints. For others it may go in the brain, spinal cord, and even the heart. These Lyme Patients will need special treatment for each type.
It's important to what neuro lyme is, because you may need a specific antibiotic that gets passed the brain barrier.
Minocycline, Roxithromycin, IVs, etc...
quote:Originally posted by Jordana: He prescribes doxy and zith first, then moves on to tetracycline and zith -- that's it, for most of his patients.
Dr. P seems like a great doctor, currently watching his video. But anyone with neuro lyme will not get 100% with just Doxy and Zith. It's just not possible.
I've seen all the doctors in Michigan. What a lot of these LLMDs fail to understand is, when they bring a person to 80% health they are not cured! A lot of these LLMDs act like they've cured people with their own special abx protocol, give me a break, sorry it's just not true!
There is no test to officially measure if you're in remission of not. I can tell you from reading posts, talking to others, as well as my own experience. Most people are still sick with this disease and stay sick, they're life has radically improved. But for most, unless you get passed that barrier of biofilms and cyst form, it's going to be tough to make a claim that you're curing patients.
Especially with just tetracycline and zith...
I watched most of Dr. Ps video, he's definitely well informed, but he's "just repeating" same old stuff... You know how old the fluconazole story is?
Until we can kill the rest of those left over persister cells, these standard antibiotics aren't going to cut it, the disease will keep coming back!
I highly suggest anyone looking for a cure, watch this company and demand this drug to be approved!
We currently have "no" antibiotic right now that addresses biofilms, all these LLMDs can get up at a podium and can talk talk talk. Same old stuff! We're still not addressing the biofilms!
[ 04-21-2016, 01:39 AM: Message edited by: Muscle Car55 ]
Posted by Jordana (Member # 45305) on :
I disagree with you that neurolyme is just a name.
I have Lyme *everywhere* and I can feel it especially when I herx. I can feel it in my nerves AND my knees.
There was a theory that it was the particular strain of borrelia that either favored the joints or the nerves. I just don't think so.. They like collagen. They can go anywhere they want to go in your body, any time they want to go. Any type of cell or tissue or fluid. If a person thinks, oh, this borrelia is only in my kidneys and not in my brain...it's a nice thought but I doubt it.
Borrelia injects itself into the nervous system within 12 hours of inoculation, that's how it gets around. Mammalian vertebrates have spines, Lyme knows its way around them.
I think Dr. P is not telling people exactly what all he does in his office, to be honest with you. He started a small pilot study in 2010 on rifing and he also has been trying to figure out how to break up brain plaques with rapamycin.
In my opinion, biofilms are the new black for Lyme in 2016. If you look at old studies on spirochetal diseases, the same story emerges over and over again. Some people get better, some do not; the reason people do not get better is because the bacteria is not cleared from the body by therapy( and it has plenty of places to hide even without biofilm) -- and the body does not have enough of an immune response to take over and kill the rest.
Even if you broke up all these "biofilms", if your body can't clear the infection then you're chronically ill.
But there is something else. Some persisting DNA has been shown to be the cyst form of Lyme. But some of it is just floating, junk DNA that gets stuck in the deeper tissues. There is nothing to "kill"there, nothing to do. It's like being full of shrapnel. But it still elicits an immune response. So what then? What drug gets rid of that?
Posted by Muscle Car55 (Member # 34707) on :
quote:Originally posted by Jordana: I disagree with you that neurolyme is just a name.
You're not disagreeing with me, your disagreeing with science.
quote:Originally posted by Jordana: I have Lyme *everywhere* and I can feel it especially when I herx. I can feel it in my nerves AND my knees. There was a theory that it was the particular strain of borrelia that either favored the joints or the nerves. I just don't think so..
Your basing your conclusion just on yourself because you feel it everywhere?
Your well aware everyone else's case is different and that there's over 100 different strains right? Sure, borrelia for some people may affect their whole body. But for others, sometimes it's certain parts of their body, like their heart and brain. Sure few bacteria might go elsewhere, but it's been known to group up.
The main point I'm trying to get across is you will need a specific antibiotic to help certain cases, not just using doxy and zith and tetracycline for all cases. Which is just hogwash and everyone on this board knows it!
quote:Originally posted by Jordana: He prescribes doxy and zith first, then moves on to tetracycline and zith -- that's it, for most of his patients.
Same guy you're talking about was on Fox News making the claim they couldn't even kill this bacteria in vitro, you're here telling me he's treating patients sucessfully with just tetracycline and zith, give me a break! http://www.fox5ny.com/news/104740644-video
I'll repeat what I stated above, for the most with many of these LLMDs, they tend to think just because they brought their patients to 80%, they leave and go elsewhere, treatment was successful? Like Dr. Horrowitz said, 99% cases relapse. This is a horrible percentage, until we address the major factor, which many LLMDs believe is biofilms, guess what, Dr. Ps protocol will never work.
quote:Originally posted by Jordana:
I think Dr. P is not telling people exactly what all he does in his office, to be honest with you. He started a small pilot study in 2010 on rifing and he also has been trying to figure out how to break up brain plaques with rapamycin.
Yeah a completely unproven technology and treatment that probably does not work. And will bankrupt a lot of patients in the process!
quote:Originally posted by Jordana: Even if you broke up all these "biofilms", if your body can't clear the infection then you're chronically ill.
But there is something else. Some persisting DNA has been shown to be the cyst form of Lyme. But some of it is just floating, junk DNA that gets stuck in the deeper tissues. There is nothing to "kill"there, nothing to do. It's like being full of shrapnel. But it still elicits an immune response. So what then? What drug gets rid of that?
Possibly, but this is the first time we've developed an actual drug that addresses biofilms. Which this main topic was about, had nothing to do with Dr. P and his treatment protocol which "if it did work" we'd all be hearing it by now...
Your constantly using "in my opinion and think," main reason why millions of Lyme patients are going bankrupt on iffy treatments. CZ-1-99 has proven itself to be successful by 60%, that's incredible progress compared to anything that you and Dr. P "thinks" works.
I've been to an LLMD in Saginaw that also claims nattokinase and lumbrokinase works and he acted like when I didn't improve he didn't understand. Give me a break, unless a supplement actual gets to the biofilm, which probably will never happen if you swallow it. We're all going to be waiting for a synthetic drug!
That's why everything we throw at it, even Dr. Sapi's claims about Samento and the rest of this natural stuff never works, but works in vitro.
I don't mind the debate, but curious, it's like you have more faith in some unproven treatment from Dr. P, than some exciting new drug that's already shown to work.
It's basically 100% guaranteed CZ-1-99 will help Lyme patients, even if it is just 60%!!!
I remember how miserable I was until I tried Flagyl, that antibiotic got my hopes up and helped me progress in this disease, while no other antibiotic did. If this drug brings people out of wheel chairs like Flagyl has, imagine the lives it will change...
Flagyl turned my pain from being absolutely unbearable to tolerable... Anyone reading this probably gets my point, "I hope!"
Posted by Jordana (Member # 45305) on :
I am...made speechless by your lack of logic here.
Please show me the literature that states that different strains of borrelia have different target tissues in the body.
I don't have faith in rapamycin; not even Dr. P does; but he's a little more open to trying novel therapies that work than many others.However you seem to have immense faith in an unproven, untested drug called Curza 99. Sapi found the same success with Curza 99 as she did with Stevia - in vitro.
I'm glad Flagyl helped you. The fact is that "protocols" don't help patients -- very rare doctors help patients, which is why I brought up Dr. P. It's not that he's got some magic formula, it's that he's been trying to help people with the tools we have available at the moment and stick with them until they're better if not well.
I just don't agree that biofilm is the problem here. I do hope that CZ-99 helps a lot of people and cures TB and so on; but a lot of these things never get to market and when they do there are quite a few aftermarket experiences to go through.Remember cipro was the miracle abx for Terrorist Anthrax in the 90's -- now it's got a black box warning and casualties strewn everywhere.
In the meantime, at Stanford,they're researching a protein that tricks macrophages into passing over foreign cells for phagocytosis,repurposed from their cancer research under Neil Spector. It would be awesome if the miracle drug came out next year but I think we're looking at the immune system and some pretty deep layers of biology before this gets figured out for real.
Posted by Muscle Car55 (Member # 34707) on :
quote:Originally posted by Jordana: I am...made speechless by your lack of logic here.
Please show me the literature that states that different strains of borrelia have different target tissues in the body.
"The organisms that cause Lyme disease in Europe include at least three species within the bacterial genus Borrelia. These are Borrelia burgdorferi sensu stricto, Borrelia garinii and Borrelia afzelii. The clinical features may vary according to genospecies: B. garinii tends to cause a classic picture of neuroborreliosis as described below whereas B. afzelii tends to cause skin lesions and less specific neurological symptoms which may be more difficult to diagnose."
Haven't seen Under Our Skin in few years, but I specifically remember one of the top LLMDs stating how some patients it affects their brain, joints, heart more than others.
quote:Originally posted by Jordana: However you seem to have immense faith in an unproven, untested drug called Curza 99. Sapi found the same success with Curza 99 as she did with Stevia - in vitro.
You're still not getting it, you can't take Stevia and expect this natural substance to go through your system and effect the biofilms in your tissue and elswhere... Synthetic Drugs are made so they can absorb in your system better, whether intravenously or oral form.
Unproven? Dr. Sapi just said it works by 60%.
quote:Originally posted by Jordana: I'm glad Flagyl helped you. The fact is that "protocols" don't help patients
LLMD protocols don't help patients, that's new to me, guess Dr. B's and Dr. H's protocols are all BS.
quote:Originally posted by Jordana: I just don't agree that biofilm is the problem here.
That's great you don't "think" and agree biofilm isn't the problem here. There's scientific research backed by Dr. MacDonald, along with Dr. Sapi, this is the main defense mechanism behind borrelia. It's also the reason why most bacteria is, dare I say "evolving" and can't be killed by traditional antibiotics.
It's great you don't "think" biofilms are the reason why bacteria are so resistent, half the population down south doesn't believe in Evolution... Maybe there's a connection here Jordana!
The main premise behind Under Our Skin, was that biofilms are the reason why the bacteria is so hard to kill.
quote:Originally posted by Jordana: In the meantime, at Stanford,they're researching a protein that tricks macrophages into passing over foreign cells for phagocytosis,repurposed from their cancer research under Neil Spector. It would be awesome if the miracle drug came out next year but I think we're looking at the immune system and some pretty deep layers of biology before this gets figured out for real.
That's great, but Cancer is completely different than spirochetal bacteria.
[ 08-23-2016, 11:34 PM: Message edited by: Muscle Car55 ]
Posted by Jordana (Member # 45305) on :
K MC55.
I'm sick today and don't have the energy for this. I hope you're right about curza 99.
Posted by healthywealthywise (Member # 8595) on :
Why does everything turn into a big discussion here lately? Nobody is "right" and until they find a real cure for us, it is pointless to make people feel bad or defend a comment.
What I always say now.....after years of treatment and all my $$'s? I'LL BELIEVE IT WHEN I SEE IT AND IT'S AVAILABLE TO ME.
That usually shuts all of the "experts" up.
Peace everybody......and stop fighting among yourselves as it's pointless and energy sapping! ;-)
Posted by Muscle Car55 (Member # 34707) on :
quote:Originally posted by Jordana: K MC55.
I'm sick today and don't have the energy for this. I hope you're right about curza 99.
Sorry to hear that, hope you feel better.
I hope I am too!
You might think I'm against natural treatment, I'm not, I've tried a lot of this stuff myself. I believe it's great alternative for pain, but actually dissolving the biofilms and killing the bacteria is another...
quote:Originally posted by healthywealthywise: Why does everything turn into a big discussion here lately? Nobody is "right" and until they find a real cure for us, it is pointless to make people feel bad or defend a comment.
What I always say now.....after years of treatment and all my $$'s? I'LL BELIEVE IT WHEN I SEE IT AND IT'S AVAILABLE TO ME.
That usually shuts all of the "experts" up.
Peace everybody......and stop fighting among yourselves as it's pointless and energy sapping! ;-)
I would say because even some of the LLMDs I've used are not educated enough on treatment. Along with patients that may come here and visit this board.
This discussion is very valuable for anyone looking for information to what's going on currently in the Lyme World. Most people are unaware this drug is even in 2nd stage clinical trials, could be in 3rd by now.
A lot of patients, along with LLMDs are just unaware how paritents are just bouncing around from doctor to doctor, a lot of these LLMDs believe because their patients leave, they've treated them successfully, it's so arrogant to assume that! Dr. M wanted me to leave a review for him when I was just in the first year of treatment, I've been on antibiotics for 5 years now, that guy is so uneducated about this bacteria it's scary. Just using something like Mino and just relying on tests for coinfections isn't going to help people. As we've found out how resilient the bacteria is from the John Hopkins study, along with how most tests can't pickup on the coinfections neither.
People are dieing, being misdiagnosed and given an autoiummne disorder which is basically a death sentence. If you don't think this deserves a debate, you can't tolerate the discussion, turn the page. Most people deep into treatment can't, it's just too much for them to handle, that's why some LLMDs stress on not visiting the boards.
Even if this drug works 50%, like say Flagyl, it will change lives. I would say Flagyl saved my life! It pushed me to new heights, pushing me to lift weights again and walk, rollerblade, and run.
Get my drift...
Jordana believes there's much more going on, considering how this bacteria penetrates deep into our body. Cyst form, along with coinfections. There's definitely something to those, but unless we address these biofilms, we won't get anywhere with a cure. A lot of science shows this, along with other resistant bacteria that are forming biofilms in this world. Many scientists are claiming that's the main self defense mechanisms behind these super bugs. Jordana, along with others might not understand that, considering how many people in this world dont believe in evolution and how it works.
This drug offers hope and that's all I'm preaching! I've seen people come on here, state they are ready to kill themselves. I care, so I give my input, rather than just posting the typical crap to comfort people.
The autoimmune pharmaceutical industry is a billion dollar industry. If you think they're just going to let this drug pass with flying colors, I really have my doubts. Kind of like how the Embers study which was suppressed for more than a decade.
What's great is, this drug isn't being pushed on based on the science of the IDSA, but the ILADs group instead, that's obvious.
What else irkes me is, when some Lyme patients and LLMDs say there is no difference between IVs and orals. So wrong! When I was seeing Dr. L in MI, the receptionist goes, well I've used orals and I've successfully reached remission. Pretty sad that she thinks because she reached remission with orals, everyone else will. Someone preaching this from a top LLMD's office in Michigan is absolute scary. Many nuero Lyme patients will need IVs!
I went off antibiotics for 6 months because I felt pressured by the LLMD Dr. L in MI, the bacteria bounced to my shoulders. When I went back, this same LLMD said "I thought you were done with treatment," I exclaimed in a politely matter, Dr. L you and I know this bacteria can come back anytime. This Dr. L supposed to be a practicing ILADs doctor, that supposedly treats with the ILADs protocol, you know treat with antibiotics till all your symptoms are gone.
A lot of LLMDs here in Michigan purposely talk people out of using IVs, I assume it's due the cost throwing up flags for the insurance industry. There's just so many lies on both sides it's becoming unbearable for a lot of people, including me.
Things aren't so black and white on both sides of treatment, ILADs or the IDSA! And it's really really sad!!!
Dr. P claims in the video on Fox News, treatment may take few months or few years, yeah you need to tell the truth buddy, how about half a decade or even a decade for full remission for a lot of cases of chronic Lyme.
There's so much crap revolving around LLMDs about detox, heavy metals, mold, parasites, etc... A lot of those are so hyped up, some definitely have influence and need to be addressed, like detoxing your liver and kidneys with milk thistle and lipoic acid while on a longterm abx regimen, but the main reason why this infection stays chronic, as science shows through John Hopkins study, is "persister cells."
"Traditional therapeutic regimes can lead to persister cells that go dormant during treatment or have acquired the ability to evade the effects of traditional antibiotics. "
***edited cities of LLMD's per LN rules***
[ 04-21-2016, 11:20 PM: Message edited by: Lymetoo ]
Posted by bluelyme (Member # 47170) on :
Any talk of trials ?...also any one hear of elq-330 for babs