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Scientifically speaking, is a full recovery even possible?

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Posted 8/27/2018 3:15 PM (GMT -7)
http://lyme-basics.com/2017/12/28/chronic-lyme-disease/

Came across this article. It was an informative read but got me thinking that all of the studies cited here seem to show that while antibiotics are definitely effective at reducing the symptoms of lyme disease, they are only effective as long as they are being used, and that after antibiotics are stopped the bacteria consistently have the ability to reinfest no matter the length of treatment due to some members of the colony entering an indefinite dormant state. I very well have misunderstood the biology at play here, or misunderstood the article itself, but it seems like recovery in the traditional sense (100% infection free after a course of antibiotics) isn’t really achievable.

If anyone has a different interpretation or anecdotal evidence to prove otherwise it is more than welcomed, as my outlook is currently pretty bleak. Especially considering that as a sufferer of mast cell activation, treatment brings a host of other problems, so if treatment must be indefinite I’m pondering if its even worth it...or financially sustainable.
Posted 8/27/2018 3:26 PM (GMT -7)
SicklySkaid - People do recover from chronic lyme disease. i know those who have treated with herbs and those who have treated with antibiotics and are well....years later.
We have forum members who have healed.

BUT, it takes persistence - it's not a quick fix.


Have you watched the documentary "Under our Skin" ? and the sequel "Emergence" ?

You can rent each of them online. They follow a few people with lyme disease and the sequel shows how they are doing several years later.

Here's a link to success stories:



www.healingwell.com/community/default.aspx?f=30&m=3562412
Posted 8/27/2018 4:53 PM (GMT -7)
I think so! I agree it isn't a quick fix. But we are all like cars, we all need maintenance. It isn't lyme for me now but every now and then I get a reminder that I need to be better about diet or exercise...in my case honestly I don't get enough sleep!

Do what you can afford and with what you have. I vote to try herbs...it might take longer but yes, I think it can happen for 99%. Just don't give up. EVER.
Posted 8/27/2018 5:21 PM (GMT -7)
Hi SicklySkald,

It's not easy ....this battle we face every day

But however bleak it may seem at this moment

What other choice do we really have but to keep moving forward with treatment

keep trying to figure out what will work for us

I understand, we all understand the doubt, the desperation, the thoughts that hammer away in our minds day in and day out... of the big question...will we ever be well again?

My hope for all of us lies in every new day....the chance for answers and a breakthrough

For healing...everything we have done or will do will be worth the day it comes
Posted 8/27/2018 5:49 PM (GMT -7)
Thanks everyone, I’m hanging in there and I know you all are too. I’ve mostly kept a positive outlook since I first got sick five years ago, I suppose the lack of standardized, accurate information about this in the medical field gets to me sometimes. That and I’m all out of wack from starting a new regiment.
Posted 8/27/2018 6:21 PM (GMT -7)
Whenever I'm herxing badly my anxiety goes bonkers and I get more paranoid about this very question. But honestly I do believe full remission is possible, I've met and talked to a lot of people who recovered. It can be a long, winding journey with a lot of ups and downs. But def feasible for most patients imo.
Posted 8/27/2018 7:02 PM (GMT -7)
The thing about antibiotics not being effective is CURRENT antibiotics not being effective because they only kill dividing cells. That doesn't mean the disease is invincible. Other diseases like tuberculosis and leprosy also have dormant cells and are curable after really long courses of multiple drugs. When antipersister drugs are added the treatment shortens. Several researchers are working on finding drugs against Lyme persisters. Even without persister drugs its possible it dies after a really long time since it will still slowly die from natural causes and immune activity but not be allowed to grow and divide. But noone really knows for sure.
Posted 8/27/2018 7:20 PM (GMT -7)
The never ending question that pops up every few months.

I know people who have fully recovered as far as symptoms go. BUT lyme bacteria (BB) is still in them, somewhere.

Their immune system is keeping it under control.
Posted 8/27/2018 7:30 PM (GMT -7)
My cousin got Lyme when she was a kid, with babs. Took a year of antibiotics for her to recover without relapse but she did. She’s been healthy for 8 years now. Several friends of friends have fully recovered too. Some after years of varying degrees of illnes.
Posted 8/27/2018 7:43 PM (GMT -7)
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.
Posted 8/27/2018 8:04 PM (GMT -7)

Psilociraptor said...
The thing about antibiotics not being effective is CURRENT antibiotics not being effective because they only kill dividing cells. That doesn't mean the disease is invincible. Other diseases like tuberculosis and leprosy also have dormant cells and are curable after really long courses of multiple drugs. When antipersister drugs are added the treatment shortens. Several researchers are working on finding drugs against Lyme persisters. Even without persister drugs its possible it dies after a really long time since it will still slowly die from natural causes and immune activity but not be allowed to grow and divide. But noone really knows for sure.

Thats a good point, I could be wrong but I think rifampin can kill dormant bacteria though right? I’m not sure how widespread its use is but I’m surprised that any drugs with the potential to kill dormant bacteria isn’t ubiqitously used. So there must be something more to it at play.
Posted 8/28/2018 2:21 AM (GMT -7)

Psilociraptor said...
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.

After almost 3yrs treatment , my microscope confirms borrelia still in rbc's ...nowhere near the load so where I am functioning 85%
Posted 8/28/2018 3:50 AM (GMT -7)
Sorry, what is rbc?

bluelyme said...

Psilociraptor said...
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.

After almost 3yrs treatment , my microscope confirms borrelia still in rbc's ...nowhere near the load so where I am functioning 85%

Posted 8/28/2018 4:21 AM (GMT -7)
Even Dr B's Guidelines has a comment that a small percentage of lyme patients will need a maintenance level of abx for the rest of their lives.
Posted 8/28/2018 4:47 AM (GMT -7)

arieco said...
Sorry, what is rbc?

bluelyme said...

Psilociraptor said...
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.

After almost 3yrs treatment , my microscope confirms borrelia still in rbc's ...nowhere near the load so where I am functioning 85%

Not trying to speak for this poster but I believe “rbc” stands for red blood cells. Bluelyme, might I ask what treatment you are using?
Posted 8/28/2018 4:51 AM (GMT -7)

tickbite666 said...
Even Dr B's Guidelines has a comment that a small percentage of lyme patients will need a maintenance level of abx for the rest of their lives.

Thats what worries me, since if I was one of those unlucky few who require indefinite antibiotics my mast cell activation will only continue to progress.
Posted 8/28/2018 5:22 AM (GMT -7)

bluelyme said...

Psilociraptor said...
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.

After almost 3yrs treatment , my microscope confirms borrelia still in rbc's ...nowhere near the load so where I am functioning 85%

I have my doubts of peoples use of dark field, but none the less if you are still sick that is an entirely different story. Astroman was saying for people who are in remission. I think it's too early to say whether they are simply asymptomatic carriers or actually cured. I'm willing to bet that both scenarios are common
Posted 8/28/2018 5:28 AM (GMT -7)

SicklySkald said...

Psilociraptor said...
The thing about antibiotics not being effective is CURRENT antibiotics not being effective because they only kill dividing cells. That doesn't mean the disease is invincible. Other diseases like tuberculosis and leprosy also have dormant cells and are curable after really long courses of multiple drugs. When antipersister drugs are added the treatment shortens. Several researchers are working on finding drugs against Lyme persisters. Even without persister drugs its possible it dies after a really long time since it will still slowly die from natural causes and immune activity but not be allowed to grow and divide. But noone really knows for sure.

Thats a good point, I could be wrong but I think rifampin can kill dormant bacteria though right? I’m not sure how widespread its use is but I’m surprised that any drugs with the potential to kill dormant bacteria isn’t ubiqitously used. So there must be something more to it at play.

Not according to Zhang, though maybe in combination with other drugs. And not necessarily. Persister cells are known to be a big part of the recalcitrance of biofilm infections and TB. There have been a few weasels discouraging any sort of interest in persistent Lyme research and it seems like they are finally out of the picture. Right now there aren't a whole lot of good anti persister drugs known and the ones that exist have potential side effects, are expensive, or have bad kinetics. Most docs still don't believe in CL and those that are starting to become open minded are still caught up on the whole "don't want to use an unproven therapy because it might hurt my patients" sentiment. Until someone has robust data that a certain drug or combination works in "PLDS" in animal and human research it's going to be very hard to get conventional docs to consider giving it a shot.
Posted 8/28/2018 4:37 PM (GMT -7)

SicklySkald said...

arieco said...
Sorry, what is rbc?

bluelyme said...

Psilociraptor said...
"BUT lyme bacteria (BB) is still in them, somewhere."

there is no way to prove that. i wouldn't be surprised, but no one really knows for sure.

After almost 3yrs treatment , my microscope confirms borrelia still in rbc's ...nowhere near the load so where I am functioning 85%

Not trying to speak for this poster but I believe “rbc” stands for red blood cells. Bluelyme, might I ask what treatment you are using?

i used everything but my staple is bee venom , herbs and rife

psilo- i thought you were a person of science? im using phase contrast for ketes btw. kinda sounds like idsa ptlds bs, lets just take bartonella per example which upon quik giemsa stain is undeniable and easily seen, even college students learn to do this simple technique in lab with brightfield. well its still there too...im ok with life long maintenance that sustainable ..

.btw venom has a substance called mast cell degranulating peptide ...my mcs has gone away with parasite tx and bvt which is weird i dont even have seasonal or milk allergy anymore...maybe gut terrain
Posted 8/28/2018 5:18 PM (GMT -7)
Hi Sickly,

It is very difficult, I know, but please try not to get into "bleak" mode.

I was SICK for a few years before a diagnosis of lyme, bartonell, and ehrlichia. Until late March, I was on a number of different antibiotics for a little over a year. Very gradually symptoms began to lessen and most of them are gone (fingers crossed).

The doctor had me stop all antibiotics in March because I was diagnosed with breast cancer and had to have surgery. The surgeon wanted me only on the antibiotic that was administerd IV while in hospital and then orally for a week after discharge. The thought of stopping antibiotics to treat the tick borne infections was frightening. I was so afraid symptoms would come roaring back, BUT they have not.

Testing done in April showed my cd57 had tanked again, maybe because of the cancer or stress or tick borne infections ... I don't know. The ehrlichia test still came back positive, and the lyme igm western blot for the first time in more than a year was not positive but was "indeterminate".

A few weeks ago another round of testing was done and I will get results at an appt w/LLMD in about 10 days.

Anyhow, sorry for being so long winded. Just want to be sure you know that even folks like me who had the infections untreated for years can and do recover. Maybe not 100% but sure pretty close to normal.

How long have you been on antibiotics? From my experience, they are what did the trick.

Best of luck to you. Don't give up!
Posted 8/29/2018 5:12 AM (GMT -7)

mareish said...
Hi Sickly,

It is very difficult, I know, but please try not to get into "bleak" mode.

I was SICK for a few years before a diagnosis of lyme, bartonell, and ehrlichia. Until late March, I was on a number of different antibiotics for a little over a year. Very gradually symptoms began to lessen and most of them are gone (fingers crossed).

The doctor had me stop all antibiotics in March because I was diagnosed with breast cancer and had to have surgery. The surgeon wanted me only on the antibiotic that was administerd IV while in hospital and then orally for a week after discharge. The thought of stopping antibiotics to treat the tick borne infections was frightening. I was so afraid symptoms would come roaring back, BUT they have not.

Testing done in April showed my cd57 had tanked again, maybe because of the cancer or stress or tick borne infections ... I don't know. The ehrlichia test still came back positive, and the lyme igm western blot for the first time in more than a year was not positive but was "indeterminate".

A few weeks ago another round of testing was done and I will get results at an appt w/LLMD in about 10 days.

Anyhow, sorry for being so long winded. Just want to be sure you know that even folks like me who had the infections untreated for years can and do recover. Maybe not 100% but sure pretty close to normal.

How long have you been on antibiotics? From my experience, they are what did the trick.

Best of luck to you. Don't give up!

I haven’t been on antibiotics very long, mostly because I’m broke and cannot afford to regularly buy all the supplements that I need to take along with them like probiotic, detox stuff, cyst buster, etc. to prevent things from getting worse.

Earlier in the year I was on bactrim for four months but had to stop because my insurance stopped approving it. I also developed mast cell activation issues so figured I would just stop treatment for awhile anyway.

I have had general symptoms for about 14 years, with neurological symptoms first presenting about 5 years ago and making me too sick to work. This summer I decided to suck it up and worked part time to afford to start up treatment again, and have been on minocycline for 5 weeks.

So in total, I’ve had only about 5 months of antibiotics, which I know means I’m still in the very early stages of recovery and should neither expect results nor think bleakly.

Thats fantastic it hasn’t come back for you, though, especially considering the other issue your body has to deal with. I’ve got fingers crossed for you too.
Posted 8/29/2018 6:10 AM (GMT -7)
I have wondered the same question. Is there a rainbow at the end of the day.

With this disease I don't think so. I continue to use the ubi equipment and take a daily light treatment.

This has become a habit over the last 5 years. I still have some days when I have the brain fog.

As for my memory, its great being able to sit the coffee cup down and being able to go back a day or so later and know where I had left it. Use to think that gremlins were playing games and moving stuff on me.

The worse was when I would put a tool up in a "special" place and then couldn't remember where the special place was.

I think because it produces a colony and it does this in cartilage that we are stuck with this "****" the rest of our lives.

There isn't the blood supply in the cartilage that would allow the immune system to mount a top defense.

The Ultraviolet light I use, does create a secondary radiation. In the 1920's they irradiated some blood, than placed the curvet on an envelop which had uv sensitive film in it. The film fogged, so there was a secondary radiation. I am "hoping" that I can kill any colonies in my cartilage with this secondary radiation...not to hopeful. But at least with a 30 minute nap under my light every day I have kept/keeping this in check.
Posted 8/29/2018 9:00 PM (GMT -7)
It definitely is possible. There are plenty of people who's stories are on this group and those I've heard through my LLMD that have made complete recoveries in due time. Don't worry, I think I worry too much too and it feeds into the rest of my symptoms and makes things worse. Negative thinking isn't very helpful either. Keep telling yourself it will pass, and that this is a phase of your life to make you much stronger on the other end.

There are so many methods of treatment out there and there is one that will work for you...just haven't found it yet or haven't given your current one enough time to fully work.

You will heal!
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