k07 said...
Charlie - i think you are very strong in your opinion and sure that your way is the right way. You could be right, but we don’t know for sure. Everyone is different. Just try and remember that.
Charlie55 said...
It can be different for everyone, especially when it consists of female vs male. For whatever reason, hormones, women being built differently, women herx more violently than most men.
k07 I have always mentioned this in a lot of my posts, it can be different for everyone due to everyone's body and genetics being different, different coinfections, and different strains of borrelia. And that's why I suggested to keep pushing on and try different protocols, antiparasitic drugs, persister cell drugs and herbs. SeanIRL only listed a few, there's many other antiparasitic drugs out there, and he hasn't tried any of the persister cell drugs with Stevia. I got the point he made, he tried Stevia with some of the drugs he listed, they didn't work. As I explained to him, there's been Dr. H's patients who have tried all sorts of drugs and the one's he mentioned, it wasn't until they tried Stevia with something like a persister cell drug like Dapsone or Pyrazinamide they had a big breakthrough, some actually reached remission.
Has he rotated his antibiotics? Tried pulsing? Dr. J does some extreme rotation of his drugs, a lot of the LLMDs aren't doing this.
He has been on prescript
ion antibiotics and some antiparasitics for only 18 months, as I explained to him, that's not a very long time when treating chronic lyme. He however disagrees with me and suggests that's long enough to tell if these are working. I'm not sure how he could come to that conclusion when he has only 18 years of experience... Maybe it's coming from his supposed Lyme Literate
"Vaccine" Doctor???
As I explained he's still in the early stages of treatment, you're not only dealing with a borrelia infection and possibly other bacterial coinfections, but also an overactive immune system and viruses. All this can make it seem like the prescript
ion drugs aren't working, but in actuality they are, just very slowly. He stated he's not herxing, I also had the same problem for the first 2-3 years or so. Not being able to tell if I'm herxing or if the antibiotics are working.
A body can be so inflamed and overactive immune system so unstable, so it's very hard to tell what drug is working.
SeanIRL said...
If you're taking antibiotics for 8 or 9 years, you're doing it wrong. 18 months is more than enough to ascertain if treatment is working.
Then he stated I've been doing it wrong, I gave great examples where there's been lyme patients with the best support possible, such as Dr. H's wife and it's still taken up to a decade or more to help her reach remission. As well as Amy Tan, Darryl Hall, and Yulanda Hughes. These are millionaires.
I'm sorry, comments like that, immediately explains to me he isn't very educated with chronic lyme and how long it takes to treat this disease.
SeanIRL said...
My IDS is extremely knowledgeable about Lyme as was part of the lyme vaccine trial back in the day, so he has a long storied history with treating lyme. He is the top lyme specialist in my country and all of my conversations with me has never left me doubting his knowledge.
His ideology is also that his Lyme literate physician is extremely knowledgeable because he worked on a Lyme vaccine. Those of us veteran Lyme patients that know the history on the failure of Lyme vaccines, this should throw up some warning signs right off the bat for veteran lyme patients. SeanIRL needs to make sure he's seen both Under Our Skin 1 & 2, listen to what some veteran lyme members like on Lymenet.org say about
vaccines and how it's given some patients a permanent arthritic autoimmune disorder.
A lot of doctors that side with lyme vaccines, have IDSA and CDC ideology.... And remember, just because they treat longterm with antibiotics doesn't make them a qualified lyme literate physician supported by ILADs. There's a doctor in Michigan that everyone calls a LLMD, but he's a Infectious Disease Doctor. He treats aggressively for the first few months, then after that you're stuck with one single antibiotic for the rest of your life, which is minocycline. The guy treats longterm with antibiotics, but still has IDSA/CDC ideology, there is still such a thing. He's not educated in coinfections, persister cells, or biofilms. When he uses tests for coinfections, it's not qualified labs like Igenex or Fry, it's just standard labs, when the bloodwork comes back negative on something like Babesia or Bartonella, he doesn't think you have any coinfections. These coinfections are just as hard to show up in bloodwork as borrelia, especially Babesia.
And just a side note, I'm not anti-vaccine, as the new vaccine could possibly make you immune to 6 strains of borrelia. Problems come in when Doctors claim these vaccines are perfect, which they are not, knowing the history of LymeRIX. LymeRIX only made you immune to 1 strain of lyme and again gave some patients permanent arthritis autoimmune disease. Back in the day there were Doctors marching around saying you can't have lyme, you had the lyme vaccine, meanwhile it only made you immune to 1 strain of borrelia. There's coinfections, viruses, and up to 52 different strains of borrelia a vaccine is not going to make you immune to! So there's been a lot of lies told, not to mention the conflicts of interest CDC/IDSA Doctors had ties to vaccine companies...
Failed Vaccine ->
https://youtu.be/40ewjpreexy?t=653SeanIRL you claim I'm being abrasive... That's fine, but there's other people with IDSA/CDC ideology that will hammer you to death with their growing opposition on Chronic Lyme. There's always going to be disagreement on the Lyme forums, they don't call them Lyme Wars for nothing.
There's starting to be a growing opposition from pro-herbalists like Buhner and Rawls that have give their opinion that biofilms are overhyped, and that Rawls thinks stevia doesn't have enough bioavailability in the body. Yet what ya know, the top LLMDs like Dr. J and Dr. H still incorporate these herbs and supplements into their protocols and they are helping patients reach remission.
There's the disciples of Buhner and Rawls that go around the Lyme forums, YouTube, social media repeating that Stevia doesn't absorb in the body. That's fine, well guess what, I'm allowed to give my opinion too. And I do just that, a lot of the herbalist lyme patients don't like hearing what I have to say. And any chance they get, they'll chime in.
As I explained, I get it, some patients can't tolerate antibiotics, they don't like feeling the drugged up feeling. But it's been 40 years since the first lyme outbread in Conneticut, if herbs cured people with lyme disease, people would be shouting for joy. There's people like me who still support herbs with antibiotics, but just herbs alone, chances of remission are rare. Amy Tan went down that route, took her almost 20 years...
Drugs and herbal supplements need to be used together, just as cancer patients with Chemo and Rick Simpson Oil.
Just like Stephen Buhner claimed biofilms are overhyped, well I'm here saying just using herbs alone are overhyped as well. A lot of Lyme patients on this board and others don't like hearing it, deal with it.... Freedom of speech!
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. This is just ONE of a great many mechanisms bacteria use to protect themselves from immune responses or antibacterial substances and so on. 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.
k07 said...
I 1000% feel that Dude is not in any way shape or form pushing Rawls. His posts are uplifting and witty. He’s one of my favorites around here.
Someone who may be connected with a company is not going to admit it to you. Anyone posting links to sites that looking like they are from Clickbank throws up warning signals to me. There's a reason why a veteran lyme forum like Lymenet.org doesn't allow website looking to profit off of lyme patients....
The truth is, there is a lot of snake oil being pushed in the Lyme communtiy, just as it was during the early days of AIDs. Frightening topic to think about
, but just remember not to shoot the messenger when it's brought up.
SeanIRL said...
I didn't ask for direction and I certainly didn't ask you to try and belittle my knowledge, when you it was clear you didn't actually read my post thoroughly and made assumptions about what I have done or have not done.
I'm not trying to belittle your knowledge, I'm trying to explain to you that things aren't so black in white with so called "lyme literate doctors," aka LLMDs. Some of them will claim they are the best and act with a ego, "if you don't get better with me, well you're going to have to live with it." They don't outright say it, but it's in their mentality. Remember all Doctors have egoes, even the nice ones such as Dr. H. I suggest keeping up with the top LLMD protocols and find a Doctor that will treat your similarly. Easier than said than done right?
That's why some lyme patients give up on antibiotics and result to just using herbs... Yes antibiotics fail, but so do herbs... Antibiotics have the best track record to date!
SeanIRL said...
Where did I ask for help or direction in my original post?
Anyone who comes to a forum and posts their protocol, saying it doesn't work, is looking for help....
Sounds like you're having a really hard time adjusting, asking for help and taking into consideration what others are saying, like how long this disease could last for, etc... Just be aware, a lot of Lyme patients have nervous breakdowns because of all this, this was stripped out of the Under Our Skin documentaries, stay strong and stay
open minded... It's hard for a lot of patients to adjust to the fact that the IDSA/CDC has lied about
chronic lyme and covered it up. As Dr. J said in Under Our Skin 2, the lie is to hard to confess to now!
If you want to try just using herbs, go for it, it's your right to do so...
I would recommend going with the stronger more purified herbs, such as essential oils, the ones listed in the John Hopkins study, the one's listed as persister cell killers, such as oregano oil and cinnamon bark. Both safe to take internally, both on the GRAS list, but must be properly diluted. And yes, too much can become toxic.
Just like Cancer which can be chronic and keeps coming back, herbs for the most part aren't strong enough to hold cancer back. In the John Hopkins study it took Mytocin C, chemotherapy, to fully erradicate all forms of borrelia in vitro. Take that into perspective, if it took chemotherapy to completely eradicate lyme just in vitro, how would herbs cure Lyme? Herbs could longterm, but it would be a very long time... Just like Amy Tan's case, 20 years! And already you're talking about
18 months being too long. If you can afford it, I'd recommend IV antibiotics... And like Dr. Burrascano said, afterwards trickle down with orals....
I see you just said you're having fatigue... For me, persister cell antibiotics with Stevia, or essential oils oregano oil helped me with fatigue.
Anyways, I apologize if I come off too strong or condescending like Girlie said, I hope for the best of everyone.. Good luck....
Post Edited (Charlie55) : 10/21/2018 11:06:15 AM (GMT-6)