Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If this doesn't outrage every person suffering from Lyme who has been waiting for a cure, nothing will.
They Are Using A $1.5 MILLION Dollar Grant To Tell Lyme Patients They Need To Eat Poop For Lingering Symptoms Caused By PTLDS.
"This is where the controversy lies, says Dr. Kim Lewis, a Lyme Disease researcher at Northeastern University in Boston. "It is not possible to isolate the pathogen from our patients suffering from PTLDS.
"We now have a compound we've identified that is highly selective in killing Borrelia (the Lyme Disease bacterium) and not other bacteria," Lewis said.
That treatment is based on the observation that 'chronic' Lyme symptoms bear a resemblance to some auto-immune diseases that arise because of a bacterial imbalance in the gut, or what is known as the 'microbiome.'
It's a treatment known as FMT, which stands for Fecal Matter Transplant. "Healthy donors provide fecal matter. That is put into pills so it becomes properly palatable," Lewis said. "And you just take it like any other pills."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
My outrage is that Lyme disease is still debatable among the medical community after 40 years.
I got gas-lighted by my MOTHER's doc yesterday.
Scenerio ;
I suffererd a massive hot flash while waiting for my mother at her doctors office. I left the waiting room, went outside to cool off, leaned up against the building, and felt something crawling on me. I turned around to look and saw a million red creepy red bugs in the clapboard shingles.
I ran inside as the doctor and my mother were coming out. I explained to the doctor about his MASSIVE problem outside. He said he hates to kill bugs and that they're harmless. He said humans cause more infectious deaths than bugs. I said no you are wrong, mosquitoes do.
I told him that I almost died from Lyme disease from a tick bite.
He said he has never heard of any human-being contracting syphillis from an insect bite.
Long-term abx are necessary to kill the Lyme bacteria: if you treat long enough, the LLMDs said, you would get well.
When that didn't work, it was: co-infections. Ah, yes, that's it! Kill the co-infections, we were told, and we would get better.
Next came cysts: flagyl is the answer, it's a cyst buster! Finally, everyone's gonna get better now!
Oh,no ... that didn't work: It must be biofilms! Yes, yes, take those enzymes, that will do it!
In between it has been: mold illness, binders! Colestyramine; heavy metals, chelation; zinc deficiency in it's many esoteric forms; oxygen, nothing can live in an environment of oxygen!, H202, Bacteriophages, and on and on and on ...
Actually, the gut seems to be the most likely answer to me -- and yet if you've been following the results, FMTs have not been that promising for autoimmune illnesses. Great for C-diff and other bowel diseases, but not so great for autoimmune illnesses.
Still, I think the gut and immunity is getting closer to the answer that any of the above.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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"It is not possible to isolate the pathogen from our patients suffering from PTLDS."
Sure, it is. Advanced Labs does just that and sends you pictures of the invaders. Where has he been?
Posts: 37 | From Florida | Registered: Aug 2009
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Dr. Kim Lewis has this theory that chronic lyme or what he calls it, "PTLDS" is caused due to the overuse of doxycycline which resulted an imbalanced microbiome.
I guess there's studies out there showing that an imbalanced microbiome can cause autoimmune disease, very interesting and probable, but is this what's keeping people sick? Knowing what we know now about Lyme Disease...
I get it, sounds like a very entertaining theory, we just have to rebalance our gut bacteria to become normal again.
But there's a few things I don't like about Lewis that I kind of just started to see until recently.
First, when one of the lyme patients approached him through email about the drug he was testing, disulfiram, he came off as a little egotistical
and told her she doesn't have a neurological disorder, nor is he convinced that the remaining borrelia is causing "PTLDS." And then suggests that some patients PTLDS resolves on their own.
quote:Originally posted by Dr. Kim Lewis: we currently do not have a treatment for PTLDS, as you know. Disulfiram failed in our initial mouse study, probably due to a very short in vivo lifetime of the compound, especially in mice.
We now have a protective formulation of disulfiram that clears an acute infection of Bb in mice. However, it is not clear to me that the remaining Bb in patients with PTLDS is causing the disease.
One factor that we see in patients with PTLDS is a change in their microbiome composition, and we are in the early stages of planning an FMT clinical trial to fix this and see if this helps.
You clearly do not have a serious neurological disorder. Barring that, symptoms in some patients with PTLDS resolve on their own. I wish you good luck.
I've had a lot of faith in this Doctor up until this point, after seeing a lot of effort he's put into finding drugs that'll kill borrelia persister cells. However, I have noticed he's tending to lean down the autoimmune side of things when it comes to chronic lyme, aka PTLDS.
The fact that he uses the term PTLDS, which the IDSA made up, has me quite weary as well. Psilociraptor suggests that he's just trying to be professional.
I didn't like how Dr. Lewis suggested she doesn't have a "serious neurlogical disorder!" First off, how would he know just by communicating through email, that she doesn't have any neurological problems. We've all seen and heard this before in the medical industry.
And second, how in the hell isn't he acknowledging the fact that a borrelia infection can wreak havoc in her brain and cause her neurological symptoms. I hate to say it, but the vibe I'm getting from him, is very similar to the vibe I've seen time and time again from the IDSA Doctors.
The other lyme patient Psilociraptor debating with me, as well as another, suggested that I'm throwing stones at Lewis for pointing these things out.
I mean, I know I can be a little to aggressive and punctual with comments at times. But as I exclaimed, have we forgotten that his theory is mighty similar to the IDSA/CDC.
All that's different now is he's explaining to us that doxycycline and imbalanced micriobiome is what's causing PTLDS. I question his autoimmune theory and immediately I'm called out for throwing stones at the guy, I don't get it...
I mean the CDC and IDSA has been completely wrong about chronic lyme from the get go for decades, probably have caused millions to die, suffer and commit suicide because they stated it was autoimmune and longterm antibiotics wouldn't work,
but you're here telling me I shouldn't question Kim Lewis's theory that suggests chronic lyme is from overuse of Doxycycline and the imbalance of the microbiome which causes it to be autoimmune?
I'm dumbfounded a little, I really am...
Not once have I seen Dr. Kim Lewis talk about coinfections and biofilms, yet I hear someone like Dr. Sapi suggest that they are the main reason why patients are staying chronic.
She recently went on a YouTube explaining that that she still found biofilms and spirochetes in a dead patient after 16 years of antibiotics, 16!!! https://youtu.be/rLKyKYWlzjA
What's interesting is, Psilociraptor suggests that I'm overplaying Dr. Kims theory about chronic lyme being autoimmune, Psilociraptor still thinks Dr. Kim is still looking to treat persister cells. But here he is thinking that a Fecal Matter Transplant is going to help treat chronic lyme patients.
Hey, I'm quite open minded to trying FMT, but I'm really skeptic after seeing and reading other studies on how resilient traditional bacteria has become in recent years. I mean they're have tough times keeping surgical tool sterile just in hospitals.
"550,000 fatalities each year are attributed to these biofilms in the US"
I don't know about you guys, but I'm mighty skeptical of this Dr. Kim Lewis outlook on Chronic Lyme Disease, aka PTLDS.
I just have my doubts because of my own experience of coming off of antibiotics after 5-6 years of treatment, then going on just herbals and probiotics.
After being off antibiotic for 7-8 months, was it my PTLDS raging back or was it the infection? Because my shoulder started to get arthritic again, as well as my hands, fatigue and neuro problems. When I went on antibiotics again, all those symptoms went away again.
All I gotta say is, I suggest preparing your minds for what's to come. Because if this guys theory becomes mainstream in the medical community, I suggest you prepare for it. Because after hearing Tincups opinion so far, I think others aren't going to like it as well...
quote:Originally posted by Tincup: If this doesn't outrage every person suffering from Lyme who has been waiting for a cure, nothing will.
Remind you we also have a new Vaccine on the way, as well as a proposition to genetically modify mice, to cure the mice from Lyme Disease so they don't pass it on to the ticks.
I honestly think Lewis is going down a black hole with the autoimmune microbiome imbalance theory, but hey, any type of work is progress right, maybe? Hopefully?
quote:Originally posted by Dr. Kim Lewis: We should not be treating patients for 3 months with antibiotics that have enormous side-effects, wipe out the microbiome and do all kinds of nasty things. We should do considerably better than that.
There is little doubt that it is because there are dormant persister-cells. So this is where I see obvious ways to intervene.
I also find it amusing that Dr. Lewis thinks antibiotics have "enormous side effects." Those were his exact words,
I'd love to hear what he thinks of using longterm pain pills like opioids and auto immune drugs on lyme patients and what would that due to the organs in their body. Even the chemotherapy and radiation they currently use on Cancer patients....
Funny he says enormous side effects, but I remember reading an article showing that using doxycycline with vitamin c together could kill cancer more effectively than tradition treatment they use, which means chemotherapy and radiation.
Question, whats with Doctors demonizing antibiotics in modern day?
And honestly, they've been using doxycycline longterm for Acne patients, even other bacterial infections longterm. How come a large percentage of those patients aren't getting PTLDS from the overuse of doxycycline?
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