Ive been lurking a bit and decided to join. I like the community here. Ive been treating this for 3 months so not long. Lately ive been struggling, very depressed about the whole situation, a bit nihilistic. I cant seem to answer these questions… and i fear for my future in living with these conditions. I am hoping some of the veterans can chime in on some major concerns of mine.
It sounds like you have a good understanding of this disease for only treating 3 months, maybe you've researched Lyme a lot or you know of other people who contracted this disease. But so far, you seem pretty well educated about
My thoughts on your nihilism/pessimism... Honestly, I would be a lot more confident and optimistic, because right now the science on Chronic Lyme Disease is very much leaning towards the disease being a chronic infection, not this PTSD crap that has being perpetuated by the CDC/IDSA. You have Dr. H working with the Tick-Borne Working Group, John Hopkins multiple studies coming out on persister cells and biofilms, Dr. Lee suing the CDC for suppressing his diagnostic test, a big case in Texas suing the CDC for conspiring with Insurance companies.
My personal opinion the truth is getting out, despite majority of Doctors still being dismissive of this disease being a chronic infection. If I look back what it was like when I first treated this disease(9 years ago), compared to now, a lot has happened since then. Our better understanding of biofilms and persister cells... New studies showing what particular essential oils/antibiotics work on persister cells, along with what herbs work on biofilms. More celebrities contracting Lyme, so more people are sympathetic towards Lyme patients.
Years ago LLMDs thought enzymes like Serrapeptase and Nattokinase worked well on biofilms... Now none of the top LLMDs like Dr. H or Dr. J are incorporating those in their protocols these days, my suspicion is that they never worked against biofilms due to never getting into the bloodstream, passed the gut... Now they're using Stevia, Lactoferrin, Xylitol and having much more success.
There's a lot to live for, considering the progression we've made in the past decade, I know it seems minor, but compared to what it was like living with this disease in 2000, 90s, or 80s... A lot of barriers have been passed and broken down!
But I'll be totally honest with you on remission, I think patients and even LLMDs misuse this word a lot. There's been articles that surfaced in past couple of years, that Yolanda Hughes said she was in remission, then a year passed, then she said she wasn't.
There's multiple patients that pop up from time to time on this forums and others, say they're in remission, claim this was the magic herb, supplement, protocol that cured them. Dude, this is the same stuff that was being said by AIDs patients over the years, even the mold issue that perpetuated with AIDs patients and even some celebrities like Greg Louganis that were scammed.
We need to sit back and look at the history of lyme, consider all the hyped protocols that have been posted on the forums over the years where in the end, that's all they were was hype: Vitamin C Salt protocol, MMS, Rife Machines, Zappers, hypothermia treatment, etc... A lot of the sketchy protocols Dr. K were using like ozone...
Question is, what is the actual percentage of patients that actually do reach remission? And I'm not talking about
this crap where just because people are out and about
living their normal daily lives, they think they're cured and remission. Because in my own state I'm in now, the only left for me is fatigue. I can go run 5 few miles, lift 300 pounds up on bench press, act like I'm perfectly normal, am I in remission? NO!!!!
Lets face it, it feels good when you tell people you're in remission from lyme, you're off all antibiotics and herbs, you have the magic protocol that worked for you and you have the cure that's going to help everyone!!!! You can definitely call it bragging, lol... It goes on a lot and I've seen a lot of it over the years, whether it's in forum posts, blog comments, or lyme patients calling into radio shows like Coast to Coast AM where they occasionally talk about
Lyme. I remember when microbiologist Tom Grier was on C2C, some patient called in claming they were cured of lyme with the Vitamin C/Salt protocol.
Everyone has to question all of it and take it with a grain of salt.https://www.healingwell.com/community/default.aspx?f=30&m=4089089
Kendal122 recently chime in on this forum saying he or she is in remisison, looks like this person has a history of chiming in every few years saying they're in remission, but here's the thing that some people missed, Kendal122 still says they do saunas...
I'm not knocking this person or others, hell I went out and bought some teasel root myself to try it, I'm just suggesting you have to question everything when it comes to Lyme, because there's a lot of lies and snake oil that has been perpetuated over the years...
1. Antibiotic resistance (and herb resistance??? some members claim herbs no longer work for them like they did in the start). The bugs are invasive and lyme and co just adapt to its environment.. Aren’t we actively contributing to this? We can never kill this thing 100%… do i have to treat this forever? what’s the point if it just gets smarter and better able to destroy us…? it seems akin to emptying water from a sinking boat with a bucket of water.
Yes, when it comes to both antibiotics and herbs, borrelia can adjust to it's environment and become very resistant. From my experience, borrelia can become resistant to even the strongest persister cell antibiotics like Dapsone. When I first got on that drug, I thought I was cured within a weeks time, best I ever felt when being on an antibiotic. As months passed, the great feeling I was getting while being on Dapsone eventually passed and fatigue began to come back. I've been on and off Dapsone for a total of two years I'd say. But it's obvious that the drug doesn't work effectively as it once did in earlier stages.
This goes for many of the antibiotics I've tried over the years. As Girlie explained, to combat this resistance, you must take more than one antibiotic and "rotate," and pulse them as well. As you progress with this disease, you'll learn what works and what doesn't when comes to treating. Yes, everybody's body is different and may respond to different types of herbs and antibiotics differently due to the strain of borrelia they have, as well as coinfections, and biofilms... But there's some strategies and techniques that always seem to work when combating chronic lyme when you've plateaus, the recent breakthrough with biofilms busters has helped with the antibiotic resistance!!!
I remember when I started studying this disease in the earlier stages of treatment, some people were saying that the borrelia in the Eastern region of the US is a lot more aggressive than the borrelia strains out West. This is what you're up against, different strains and different behavior, some borrelia goes straight to their joints for some people, some it's mainly neurological.
2. Buhner asserts the treatment philosophy of Protecting endothelium structures, cytokine modulation, specific symptom treatment (etc etc) and killing bugs until the immune system is able to control the infection on its own. How much merit is there to this? theoretically it sounds great, but what if the body just doesn’t adapt… doesn’t that mean we have to treat this thing forever until we’re dead? not to mention the decline in life quality and our contribution to abx resistance into some super hectic untreatable bug (since we’ve exhausted all viable abx)? what about the cumulative damage to vital organs? or even the production of cancer from Co?
and in the flip side, lets say you do get to a point where your body controls the infection and you can say happy days - lyme and co adapt to its environment, so shouldn’t it still be able to overcome the body by whatever means it uses? All possibilities point to failure and disease in the long term.
Man I have to say I take a lot of stuff Buhner says with a grain a salt, this is the same guy who says biofilms are just a hysteria in the lyme community and you don't have to address biofilms because they are natural...
Here's a fact for you "Around 550,000 fatalities each year are attributed to these biofilms in the US"https://www.dailymail.co.uk/health/article-5821197/applying-tea-tree-oil-extracts-surgical-tools-kill-deadly-bugs.html
The truth is, biofilms are the reason why bacteria is evolving and is so hard to kill, reason why surgical instruments are so hard to clean, reason why MRSA and Tuberculosis are becoming antibiotic resistant and hard to treat.
In Buhner's world, he doesn't feel like addressing this new revelation and change his protocols around, so he just says biofilms are a natural thing.
Stephen Buhner on Biofilms 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.
Buhner doesn't have a lab, he goes by what he reads in studies and what he knows through trial and error with herbs on lyme patients, a lot of his ideology comes from guessing.
Look, there's even LLMDs that are stubborn, claim to be trained and use protocols by ILADs, my old LLMD in Saginaw Michigan, who has an ILADs certificate hanging in his office... Guess what, he hasn't adapted with new protocols to address the biofilms or persister cells. Human beings are stubborn, despite having a PhD and claming they're a Doctor. It really makes me wonder how many of these supposed lyme literate doctors haven't adapted to the new persister cell and biofilm protocols being used by top ILADs Doctors? I bet it's the majority of LLMDs...
I wonder how long it's going to take for the majority of Scientists and Doctors to change their beliefs on Chronic Lyme Disease after the truth comes out that this is a chronic infection?
Here's the thing, do I still think Buhner is a very intelligent guy and helps a lot of lyme patients, yes, but not everything he says is from the Lyme Bible and etched in stone.
What has been revealed in the John Hopkins studies is now being translated into work done by Dr. J, Dr. H, and a lot of lyme patients are having success with Stevia and Dapsone, Lactofferrin/Xylitol with Dapsone/Daraprim. Basically any of the new presister cells drugs with the new biofilm busters.
You don't want to use the toxic persister cell antibiotics? Fine, give the persister cell essential oils a try from the John Hopkins study. I know there's patients out there having success with them and stevia/xylitol used together.
I like putting a few drops of essential oils clove in a capsule filled with GSE, Cats Claw... Then separately using Stevia and CBD oil together. Been working pretty good!
The statistical significance of people never getting better, despite treatment. there are so many stories of people that just haven’t gotten better.. and not many stories of people that have. is it a case of people just dont document their recovery and there are lots of people that ‘go on to live a happy normal life’? or is it truly statistically significant that people just dont recover fully again?
A restoration of lie quality just seems so… out of reach
it makes me want to give up.. and its only the beginning for me.
I know it's tough, it's tough knowing that majority of lyme patients are having a tough time getting better. My suspicion is what happens to an American population that already is obese, overweight, diabetic, doesn't exercise, and then comes down with a chronic disease.
It's a scary thought... I'm not trying to put all the blame on people's preexisting conditions, but lets face it, like they said in Under Our Skin, antibiotics and herbs are just the bullets, you must get off your ass to fight this disease, this means excising, eating healthy(gluten free, high vegetable/meat protein diet, banning all sugar and carbs)... Very similar to a Cancer diet...
Honestly though, after we've learned about
biofilms and persister cells, this is a big stepping stone for the lyme community. I know these new findings work, because I've seen them work incredibly for me since the majority of symptoms are gone and I can obviously see what works and what doesn't.
After I told one of the patients that was asking for help because 18 months of antibiotics weren't working, that I've been in treatment for 8-9 years.... They remarked I've been doing it wrong! lol... Then I went to mention others who took up to 20 years to reach remission like Amy Tan, who went all herbal.
You can read the article here https://www.healingwell.com/community/default.aspx?f=30&m=4075808
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.
The point I'm getting at is, even if you explain the truth about
how resilient this disease is and how long it can take to treat, you have new Lyme patients that won't even believe you... lol
After I debated with SeanIRL for awhile, giving my own advice, another post popped up by Mark FW, saying he's leaving because one, he couldn't deal with the advice I was giving SeanIRL and second he supposedly has the cure that's been curing 1000 people and no one's been listening to him.....
So yes Deadman, this is what you're up against dealing with Lyme Disease and even the community within it... https://www.healingwell.com/community/default.aspx?f=30&m=4082250
Mark FW said...
One, I cannot handle all, what I feel, is bad advice being passed around. Second.. the Lyme culture is a club in itself. I no longer hold to the beliefs talked about on this forum nor the Lyme Literate community The championed LLMD's talked about are in many cases telling us what we want to hear. Many I'm sure well meaning but are playing wack-a-mole with your body. Therefore out of respect for the forum, it's best I don't participate.
People are getting cured on ACC. 100's if not 1,000's of them. All the Moderators are healed or healing.
18 months isn't a very long time when you're talking chronic lyme, especially if you're just treating with oral antibiotics. I've been treating for 8-9 years with oral antibiotics, I didn't see much breakthrough until after 2-3 years of treatment... Inflammation kept getting worse, so did a lot of my other symptoms. As the old saying goes, everyone gets worse before they get better when treating chronic lyme.
If you've contracted viruses, along with a few other coinfections, it can take some time for these viruses and coinfections to die down when your immune system is on overload.
Mark FW said...
Case is point, several weeks ago someone posts that they've been on abx for 2 years, no improvement and no herx. Many jumped in and told him that 2 years was not enough time. Please, think about this.
I know there's a lot of patients that don't like me on this board, because I blatantly reveal a lot of truth and lay it all out about
Lyme Disease. If a lot of the information I tell isn't the truth, then have a debate about
it and explain what I'm saying is wrong and why, don't just have a hissy fit and say you're leaving the forum because of it.
I told Mark FW I'd love to hear more about
the 1,000s of patients being cured by ACC and please link to the articles or forums posts for a little bit more proof, guess what it never happened! How many times I've seen this happen is in the hundreds of times.....
Truth is, after studying other odd topics throughout the years.... The metallic craft flying around our planet, lol, human beings sometimes don't want to be told the truth so they zone out the reality of it, and just live in their own beliefs and bubble. How many lyme patients and even LLMDs do this with their own treatment protocols, then never adapt? Always keep an
open mind at all times... And when you're wrong, admit it, so the truth is revealed. I know there's plenty of times I've been wrong about
Lyme and had to adjust, changing my protocols around and adapting. Never get stuck with thinking that one particular lyme doctor or patient is right about
this disease, listen to everyone's theories and come to your own conclusions... But definitely hold those that have been dealing with this disease for a number of years with more integrity than others, what I'm getting at is LLMDs like Dr. J and Dr. H... The experience and knowledge from these Doctors is incredible, please listen to what they have to say!https://youtu.be/-2b4qsomnke
Hope this helps Deadman!
And I must say, I'm so glad I chose life instead of just giving up! To me, heaven is on earth, for all we know, all there is is blankness afterwards. I like to believe in an afterlife, but to me, I make most of what gift that has been given to me as a living organism on this planet, I don't count on living life in the afterlife, counting on some type of fairy tale we have no proof of. There's people that are born without sight, arms and legs... Stuff that makes lyme disease look very less significant!!! I know the first few years are hell, dealing with chronic pain and constant fatigue, but after progressing with this disease and the inflammation/fatigue begins to go down, life is so much easier to deal with. There's a lot to live for, to me the best things in live are free, the people and environment around me. I love the Outdoors, so just being able to get out, walk around, witness wildlife, fish, hunt, exercise... To me the other materialistic stuff is just that, materalistic garbage, sadly majority of human beings don't look at it that way. They have to have a big house, sports car, live in a tropical environment etc...
Bring on the snow Snow Mister, I find every season out of the year beautiful!!! https:// https://youtu.be/_sglpna_ick
Stay strong and keep fighting, we're all in this together!
Whatever doesn't kill you, makes you stronger, just like this darn bug borrelia. I'm going to adapt to it's weaknesses and go after it with everything I've got. Fighting chronic illnesses isn't just a physical thing with antibiotic drugs, eating healthy, and exercising, but also a mind game. Become a Lyme Warrior and keep fighting this disease my friend, it'll be well worth it in the long run!
I'm living proof that just by what I write, that the recent biofilm busters and persister cell antibiotics/herbs work. The majority of lyme patients can't keep the train of thought like I do, let a lone write long paragraphs and sentences like this. When I got on biofilm busters and persister cell antibiotics that Dr. H has been using, it's like a cloud has been lifted off my head, just as Dr. H's wife described. I'm not bragging, I'm just trying think of ways to convince people that the new protocols do work and more patients should be trying them. Again, you can't tolerate antibiotics and the unwell feeling of their toxicity, try the other persister cell herbs John Hopkins mentioned with biofilm busters like Stevia or Xylitol/Lactoferrin.
It's great to see that more biofilm posts are starting to pop up now, along with persister cell posts and comments... I really suspect if I knew what I know now, had used these persister cell drugs and biofilm busters in earlier stage of treatment compared to later, it probably could of cut my treatment time in half, all those years I wasted on protocols and supplements that never worked... There's a lot better direction now than years ago, but you still have to sort through all the old information and false claims of cures, it's not easy! Just like the fake news through corporate media... lol Who might I add still says lies about
chronic lyme disease, as well as other things! Time to wake up human beings! You can thank the internet for the truth, which might I add a lot of Doctors hate, when you bring them new studies that they aren't aware of, makes them look dumb while making you look more intelligent then they are.
I brought the John Hopkins study to the Saginaw LLMD in Michigan 4-5 years ago, guess what, he still hasn't adapted to the new protocols in 2018, going into 2019. Dr. L, if you're reading this and too scared of using Dapsone, then try other persister cell antibiotics in the John Hopkins Study that have a less half life and toxicity... Don't keep using the same antibiotics and drugs that aren't working, haven't been working, expecting different results each time, it's moronic and egotistical. "Adapt or Die!" I hate to use those words, this is metaphorically speaking of course, but this motto works in all walks of life, considering the movie Moneyball!https://youtu.be/ugn5ad5p2nu
Egoes get in the way majority of the time! And then there's corruption, CDC/IDSA...
Post Edited (Charlie55) : 12/17/2018 6:32:21 PM (GMT-7)