53-year-old female's (R.I.P.) autopsy reveals the persistence of Lyme after 16 years of antibiotics.

This study came out a few days ago, (11 October 2019).

This poor lady was on antibiotics for 16 years.

Her autopsy (rest in peace, kind lady) revealed that Lyme Disease persisted in her body after !! 16 years !! of antibiotics.

Click on "View full-text" to see the entire study.

https://www.mdpi.com/2079-6382/8/4/183

JovaLyme said...
Wow, that is sad and quite worrying.

16 years of antibiotics and it could save her life.

Very, very sad.

“...who had received extensive antibiotic treatments during extensive antibiotic treatments over the course of her 16-year-long illness. We also asked what form the organism might take, with special interest in the recently found antibiotic-resistant aggregate form, biofilm.”

We don’t know how long her “treatments” lasted during the 16 years... and did she treat coinfections ... etc. Biofilms and cysts.

Not enough information - but I didn’t read the entire article.

There's a plethora of other options out there with potentially as good or better outcomes than long term abx. Anecdotal stories and studies such as the disulfiram study, BVT study etc. have shown that alternative methods to abx beat out the typical abx used in chronic lyme.

Just using common sense one can surf around FB Lyme groups, reddit, this forum and see that the number of people truly getting better from long term abx only seems shockingly low considering just about everybody treating for chronic Lyme starts out with long term abx.

Just my opinion. As always there are no stats or studies to back up the effectiveness of chronic Lyme treatments. To each their own. I'm not trying to sway anybody any type of way.

RainyCloud said...
I think Girlie (and this is just my opinion) the problem with remission is that it isn't the end to the bigger problem.

It just means it's currently in a remission stage, it's less intense than usual, but it's still there.

So many people have relapses after 1...5....10...15 years.

They even come back here or on other forums.

And the one thing in common most of the time, is that the people that come back, are the ones that were on antibiotics.

I don't think antibiotics is a solution to Lyme, I personally hope we get to a point where it's not even considered.

Lyme is a different creature.

My goal isn't remission, I want the Lyme out of my body. I hate it.

Whether it’s abx or herbs .. or whatever - it’s considered remission - symptom free - but not a cure.

Lymie24 said...
Super sad for that lady. **** the CDC/IDSA. Just more confirmation for myself that antibiotics is NOT the long term answer for chronic Lyme. It took me 4 years of illness to finally come to peace with that. The quicker one can come to that conclusion the quicker you can try stuff that might actually work.

We certainly don’t listen to the cdc/idsa who ignore chronic Lyme

Girlie, I agree with Jova here.

Because your question is like saying that since it's hard to measure if someone is cleared, that everybody can only reach remission....

Lymie24 said...
There's a plethora of other options out there with potentially as good or better outcomes than long term abx. Anecdotal stories and studies such as the disulfiram study, BVT study etc. have shown that alternative methods to abx beat out the typical abx used in chronic lyme.
.

The only person I know who has claimed success with bvt (so far) is bluelyme - but he also used abx prior and they helped him as well.

Disulfiram looks promising - but too early to know at this point...time will tell

The original comment that seemed to spark debate was regarding relapses in those that use antibiotics. I think it’s safe to say one can relapse regardless of the use of antibiotics or herbs. Most of us on here seem to use some combination of both. We all know that cure is tough to define but instead we work towards symptom resolution and call it remission. And I do not think the relapse rate is higher in those that use antibiotics. There are plenty of people that relapse after stopping herbals. We know they are not the end all and be all to the disease but it’s the best we’ve got especially when used with all the supportive therapies and herbals. You can’t claim to be cured using herbs or antibiotics. But people do get well and most of us are doing a lot more than just taking antibiotics.

Upatnite said...
The original comment that seemed to spark debate was regarding relapses in those that use antibiotics. I think it’s safe to say one can relapse regardless of the use of antibiotics or herbs. Most of us on here seem to use some combination of both. We all know that cure is tough to define but instead we work towards symptom resolution and call it remission. And I do not think the relapse rate is higher in those that use antibiotics. There are plenty of people that relapse after stopping herbals. We know they are not the end all and be all to the disease but it’s the best we’ve got especially when used with all the supportive therapies and herbals. You can’t claim to be cured using herbs or antibiotics. But people do get well and most of us are doing a lot more than just taking antibiotics.

True - I agree

RainyCloud said...
I understand where you're coming from Girlie.
Man I just wish we were all better.

Me too!

I am not pushing abx - really I’m not. They are working for me - I’ve gotten rid of most of my symptoms while using abx as my main treatment.
I am just defending that abx territory because it does work for many.
But I also take herbals and other supports.
Cryptolepis, Artemisinin and Enula have been part of my protocol with Dr J.
Lots of supplements prescribed by Dr J

JovaLyme, the issue is not all of those drugs have great penetration plus the pathogens sometimes find workarounds to avoid the medication(s) (dormancy, shape-shifting, etc). Borrelia is a very clever organism.

The reason for the symptoms I believe is that the pathogen toxins are driving a chronic inflammatory response by the immune system. Those of us with susceptible immune system genetics are primed to have the more explosive responses to the pathogens, what you could almost say is that our system is allergic to the toxins. That's how I see it.

Methylene blue is quite interesting, Zhang had a study this year showing it has very good effect on stationary phase bartonella (in vitro). My doctor suggested this could be an add-on with the disulfiram, but since the disulfiram is already a handful for me I will likely wait on it. (plus I don't think bartonella is a big issue for me anyways, at least at this point)

I think they would end up scripting it to me thru a compounding pharmacy. Some people are getting from other places (if they don't have a doctor to prescribe it). There is a Methylene Blue for Bartonella facebook group, members seem to have various hook-ups for it.

Key to the antibiotics is finding the right combos. It's very tricky, and need to keep rotating whenever we plateau (imo). Disulfiram seems like it might be a golden ticket regarding hitting all phases of borrelia, but it's really going to be a time will tell thing. I think it's amazing that it also seems to have good activity on babesia, and it's not even an antibiotic (which is awesome).

For those of you bad mouthing ABX, you should read in the crucible of Lyme disease by Kenneth Liegner. The lady in that story is the lady in this study.

She would get better while taking IV ABX but her insurance refused to keep giving her more which ended up killing her. This was prior to mas biofilm and persister cell knowledge. Also not sure what combos she did.

ABX haven’t relieved my worse symptoms but I sure as hell am herxing/flaring so something is happening. I also think that taking 3+ at a time is key. These bugs laugh at the “normal” single administration ABX like doxy, penicillin etc based on my own experience.