Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
We now have multiple studies confirming persistence, despite months or years of abx. I also tested PCR positive for Bb after 3+ years of abx usage & continued usage has only made me worst some 5+ years later & I have tried the best of the best combos of abx.
"Histological examination of liver biopsy tissue revealed spirochetes dispersed throughout the hepatic parenchyma, and the spirochetes were identified as Borrelia burgdorferi by molecular testing with specific DNA probes. Motile spirochetes were also isolated from the patient’s blood culture, and the isolate was identified as Borrelia burgdorferi sensu stricto by two independent laboratories using molecular techniques. These findings indicate that the patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Makes you want to burn the house down, doesn't it? To hear the idiots continue to say there is no such thing as "chronic Lyme disease" literally makes me sick. They know better.
Even with all the studies supporting us they won't listen.
The only recourse we have now each time a report like this is published is to say...
I told you so.
And there is no real satisfaction in that.
How many more have to suffer and die before we can get a cure?
posted
It's amazing how there is no possibility acknowledged of drug resistant Borrelia by one side of the debate but all other bacteria become resistant with exposure to antibiotics. I wonder what other medical issues the IDSA misses because of pride and conflicting money interests.
What antibiotic combinations have you tried Lymed?
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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Jordana
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posted
I am getting excited for the release of the ceres nanotrap. If it can do what it says it does then we'll be able to tell if Lyme is active -- and when it is not active.
LLMDs are not afraid of borrelia, even though they know how hard it is to kill. They're pretty confident it's killable down to the level the immune system can manage it.
So knowing that, sometimes I wonder if people who are not getting better have some other bacterial issue that's bringing their health down. It would be good to know whether it really is actually still borrelia. It would be a treatment tool we've been waiting for for 40 years.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Jordana, I think you are vastly overestimating the power of LLMDs and current treatment protocols.
I think Borrelia just has the ability to hide in places where antibiotics cannot get to in very high levels.
It has amazed me the places that Lyme seems to be hiding out in my body after years of antimicrobials. Deep in bones, tons still sequestered in the brain. Barracading itself in biofilm.
I think the difficulty for Lyme sufferers is that our immune systems were not strong enough to keep Borrelia in check initially. So the challenge is getting the levels of Borrelia down while also getting the body a greater level of health than it was prior to getting sick. This is a tall order, especially after all the damage caused by Borrelia not to mention the treatment itself.
LLMDs have a very difficult job and one I can't say I envy.
Posts: 131 | From CO | Registered: Jul 2015
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Jordana
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posted
The animal guy, S.W. Barthold, says that borrelia persists even after antibiotics in pretty much every vertebrate. But what he says is that even though the organism persists, in most cases the disease does not.
I'm not sure how you know, though, that there is borrelia in your brain or your bones. They actually have no reason to go into bones, there's no food there for them. I mean they *can* go there but I don't understand why they would. They also like the meninges because there's lots of collagen there but I think they get trapped in the brain. If they really liked it there there would be a lot more people who died pretty fast of Lyme.
What I think is that when the organism resurges or starts to proliferate, that's when we get sick and get symptoms.That's the relapse. Which is why I'm excited about Ceres.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
When I herx from antimicrobials I can feel sort of buzzing sensations and sometimes heat from the inflammation in a particular area. The strength of the sensation correlates to the level of detoxing. Eventually the sensation goes away and so do the symptoms from that area, wrist pain, etc.
I'm pretty sure this feeling is Borrelia & co being killed and it has allowed me to get an idea what area I'm hitting at any given time. It's also useful to be able to use topical treatments on the area once you know it's the main battlefront.
Lyme's survival is predicated not only on eating but on avoiding death. Strains that persist and hide away in inaccesible areas would tend to be favored over time through natural selection.
Bones, joints and also the brain are good places to hide from antibiotics and also the body's immune system.
I agree they do seem to go through periods of dormancy and activity and an accurate test for this would be quite useful.
Posts: 131 | From CO | Registered: Jul 2015
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Jordana
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posted
Okay but what I'm saying also is that if a person has been treating Lyme for five years, killing the hell out of it, with just a massive amount of abx...well, maybe it's not Lyme anymore, maybe it's another pathogen.
We have no way to know that yet!
It might not be true for everybody, but for people who are just exhausted from fighting this, who've been down every road, if even just a percentage of them were able to find out they needed to be treating something else that would be awesome.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I've been improving steadily with a 3 antibiotic combination. It was preventing my health from getting worse but only noticed symptom improvement after changing diet. There is definitely and increase in imflammation/herx. After the imflammation, there is a small, lasting improvement that holds until the next wave of imflammation followed by another drop and on and on.
Minocycline, clindamycin and penicillin vk. Clindamycin is effective in environments with low oxygen levels, against microaerophilic bacteria like Borrelia. Areas like joints, lymph system. I tried dropping one of the antibiotics but got much less imflammation and no improvements.
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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Jordana
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posted
Clindamycin is a very interesting drug. Dr J DC thinks it should be first line for Lyme.
Posts: 2057 | From Florida | Registered: Feb 2015
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Lymedin2010
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posted
3+ years of heavy, heavy abx, with only more & more symptoms and issues after & PCR positive for Bb strain 31.
5+ years of top notch combo's & only worst.
If one is lucky the best you can hope for is to eliminate the co-infections once it is late stage.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
What antibiotics have you taken in the past that worked for a little while, improved symptoms even slightly? I made a list, then took them at the same time, still taking them now. Improvement is slow but steady in one direction with no sign of resistance. The pain/imflammation got slightly worse initially but felt different. Every 2 weeks I would notice a slight improvement. That was a few years ago. Now the improvements come after about 10 days. I was bit by a tick 33 years ago, have arthritis in my spine, feet, shoulders, ribs, hips, left wrist, neck and probably a few more places. Never thought I would get better before but now Im looking for a full recovery if possible. Im about 80 to 90% better.
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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Jordana
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posted
Winter Park has a great point. Not all abx work the same way for each strain. It could be B31, but it's not B31 *in you*, it's whatever it made of itself in your body environment.
One of the abx you took maybe long ago but felt "something" on could make some headway now. Also as you know co-infections protect borrelia.
There is a way to kill these things. Nothing on this earth is immortal. We just have to keep trying.
Posts: 2057 | From Florida | Registered: Feb 2015
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t9im
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posted
Hi Jordana:
The Barthold study in 2014 was on mice. It showed persistence after one year past treatment (previous studies had only gone out 3 months).
Of course the findings conflict with the IDSA position.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Jordana
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posted
Yeah, it actually *resurged* to the same level of the treated animals. But it seems to me that if you kept hitting it it would eventually learn to stop doing that.
Posts: 2057 | From Florida | Registered: Feb 2015
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Lymedin2010
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Member # 34322
posted
Doxy, Bicillin shots, Penicillin VK, Cowden Protocol. Those worked the best, until they stopped working.
BTW, that is a pic of a spiro in my blood recently with a new method I devised.
Posts: 2087 | From NY | Registered: Oct 2011
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Jordana
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posted
You'll never not have spirochetes. In fact most people do have them.
You know the drill. Get back on treatment, rotate back through.
Posts: 2057 | From Florida | Registered: Feb 2015
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Phoiph
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posted
Unfortunately, IMO, the entire chronic Lyme treatment premise is flawed.
With chronic Lyme, there continues to be a fixation on "kill". Kill strategies can be very successful when Lyme is diagnosed in early stages, while the immune system is still functioning well, and is capable of "mopping up" the stragglers.
Once Lyme becomes chronic, however, while an inflammatory neuro-immune wildfire is raging unchecked in the body, instead of grabbing a fire extinguisher, traditional "kill" methods seem to ignore the fire in their pursuit for the arsonist!
If the "kill drill" was working so well, why are so many people suffering and still looking for answers after so many years?
Posts: 1885 | From Earth | Registered: Jul 2013
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Jordana
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posted
I think it's that Lyme changes the inflammatory cytokine profile in a way that allows it to proliferate. It changes the terrain so that it can move around easily and undetected.
So you can kill a lot of them but when they're ready to come out the immune system has already been primed to fail to stop them.
At that point the only thing to do is go after them again. One hopes that after a LONG effort to keep them suppressed the cytokines will begin to operate normally.
In the meantime all those up and down regulated cytokines are going to make you feel terrible.
It is an auto-immune disease, it's just one medicine isn't prepared to manage.
Posts: 2057 | From Florida | Registered: Feb 2015
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Phoiph
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posted
Of course Lyme changes the inflammatory profile in a way that it allows it to proliferate. It also lowers body temperature, reduces oxygen flow, hypoperfuses, makes you confused, inert, and hopeless, etc., etc., etc. It has many survival mechanisms.
This is what I disagree with based on my experience in becoming well with mHBOT:
"...At that point the only thing to do is go after them again. One hopes that after a LONG effort to keep them suppressed the cytokines will begin to operate normally..."
It became apparent to me while I was healing that the exact opposite was true...breaking the inflammatory cycle and normalizing/empowering the immune system happened first, which created an inhospitable environment for the pathogens, allowing the immune system (and other systems) to recover and take care of business...
Posts: 1885 | From Earth | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
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posted
Way cool Lyme2010! How did you do that? Nice pic!!!
posted
I agree it would be nice to know if the lyme is truly active, and if it is truly causing the illness.
I'm in the process of treating lyme, b/c I don't have much choice. But yet, what brought me from relative functioning to borderline disability was run-of-the-mill summertime virus going around my office. After that, was never the same.
I can feel some very specific symptoms lifting with treatment, but it's kind of like me going gluten-free. I got a 1% improvement, but the underlying problem is still there.
And the observation in this thread is so true that there may be undiagnosed (or even undiagnosable) bacteria or other infectious disease processes that are present in some people treated for chronic lyme, things that may actually be responsible for symptoms.
It's like: Susie is sad today. It is raining outside. Rain makes most people sad. Therefore, Susie is sad because its raining...
Hmmm, Susie might be sad for a different reason, even though it IS raining outside, and that does often make Susie a little sad. But the rain may not be WHY Susie is sad. If the rain is treated with some sunshine and Susie doesn't get better, should we keep treating the sky with sunshine for 600 more consecutive days? Sure, maybe susie will get a little happier, but will not be happy until whatever was making her sad is addressed.
Posts: 200 | From Ohio | Registered: Apr 2016
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posted
That is a nice micrograph Lymed, great shot.
I try not to read too much about what can and cant be done treating Lyme because all the info tends to overload my brain.
Trial and error can be a powerful tool. No matter how knowledgeable a doctor is they cant feel the symptoms of a disease that is still being figured out.
I wouldnt take antibiotics for more than a couple weeks if I didnt notice a change in symptoms. Symptoms are like Project described, more intense when killing off the bacteria before a slight improvement.
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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