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Researchers’ discovery may explain difficulty in treating Lyme disease (new treatments discussed)

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I think its important to find a place and a treatment for people like me and my daughter who are in this category.

Hi @justy,

Quite simply, it's unlikely to happen any time soon with conventional medicine, which seems to run along pretty narrow parameters, making it excellent for many health conditions, but mostly ineffective for treating complex diseases like Lyme. And it doesn't really look like they have much genuine interest in it besides--it's probably uncomfortable for them to think outside the box.

As far as treatment is concerned, I've tried many things in the past, like Rife, MMS, homepathy and more. I only got limited results and eventually got discouraged. My new approach is to subscribe to Bryan Rosner's newsletter ($14.95/year), and follow him closely. He seems to live, breathe and think on Lyme topics every day [with a fully functional brain besides], and has managed to use his knowledge and strategies to completely recover from his own long-term, debilitating Lyme.

I'm at the point where I feel I need to lean more on somebody this knowledgeable, and is willing to use all the tools of modern technology to help pwLyme who have been unable to get the help they need from the medical establishment. This seems like a better strategy than the hit and miss approach I've been using that has only gotten me limited results. I'm going to try to discern how he thinks about every minute facet of this dreaded disease, and try to develop a specific plan tailored for my own unique situation.

I guess that's my new "action plan". I don't have too many of them! :)
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
And the fact that different researchers or experts have different opinions as to the cause of chronic Lyme, that is a good thing. It may indeed turn out that chronic Lyme is not caused by a chronic Borrelia infection, but is due to say immune factors or damage caused by the acute infection.

I myself tend to favor the idea chronic Lyme is caused by chronic Borrelia infection, but I recognize that nobody yet knowns the real cause.
It may seem surprising to some, but while I'm convinced that the origin of my CFS was the unresolved borreliosis, I am open to the idea of a different mechanism that would make people sick after treatment. Here's the problem: they have not proved it, not once. On the other hand, there are around 270 peer-reviewed studies from researchers and universities all over the globe that prove the wily persistence of borrelia despite antibiotic treatment, the fact that borrelia creates biofilms to shelter itself from antibiotics and immune response, that it burrows in tissue and it morphs into cysts. All those things have been proven and replicated. Yet those 270 studies are discarded by the gatekeepers of all things Lyme.

When the leads at the IDSA are asked why so many Lyme patients remain sick after being treated with antibiotics, their answers are esoteric or simply ridiculous. Some claim it's psychological problems or unresolved childhood traumas (sounds familiar?), some others claim it must be an auto-immune response, others claim it's just the "pains of daily living". None have been able to prove these idiotic responses. None of them have researched further.

If we changed "Lyme" for "tuberculosis", and up to 1/3 of people treated with abx for TB remained severely ill, those answers would not be acceptable. Heck, they wouldn't be acceptable for most illnesses, yet this type of reasoning is perfectly ok for Lyme in the USA, a new and poorly understood disease.

PS: in an interesting twist, you have researchers like Paul Auwaeter, one of the members of the IDSA Lyme panel, suddenly singing a different tune. For years Dr. Auwaeter has been disparaging and insulting Lyme patients, calling them loonies, people with psychiatric problems, and claiming that Chronic Lyme is akin to moon-landing conspiracies.
Well, Dr. Auwaeter just published a study with Dr. Ying Zhang that acknowledges borrelia persistence after abx treatment. The intro is heavily worded towards the IDSA position, but then admits the existence of abx refractory Lyme. Interesting: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
Just wanted to pre-emptively reply to my previous note to add the research of Dr. Brigitte Huber at Tufts. Her studies show that Lyme patients with the HLA-DR4 gene allele never recover when infected by the BB Lyme spirochete. This mechanism is related to how the immune system responds to the infection. People with the HLA-DR11 allele produce NK cells to target and destroy the pathogen. Folks with the HLA-DR4 allele produced vast amounts of interferon gamma and no natural killer cells. This points to genetic predisposition of some types to not be able to fight the infection; added to the antibiotic-resistant nature of borrelia, it is a recipe for disaster making the infection indeed chronic. While it does not explain all cases of borrelia persistence, it shows a clear mechanism by which the infection becomes chronic in a subset of patients.
 
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duncan

Senior Member
Messages
2,240
Brigitte Huber is not unknown to the ME/CFS community.

Lots of overlapping.

I always found it curious, for example, that the NIH Lyme team can do double duty in EBV and HHV-6 research, if I remember correctly. I wondered how they'd find the time with 300,000 Lyme cases springing up, like geysers in Yellowstone park, every year.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
@Dufresne @duncan @paolo ...

I managed to see the sequel to Under Our Skin. One of the (many) questions that I was left with concerned a lyme test. The film briefly featured a Norwegian researcher, Prof. Morten Laane, who was claiming to have an incredibly simple method for finding borrelia spirochetes using conventional microscopy and saline-diluted blood samples. The film stated that his research was shut down, although that story wasn't really explained.

Searching online doesn't throw up much information about him that I can make sense of. Does anyone know if his technique is useful? Has anyone else pursued it? Why was he closed down?
 

duncan

Senior Member
Messages
2,240
@sarah darwins , I know of Prof Laane. I know for instance he just spoke of the Norvect Conference in Oslo this past May, so he's still active.

I also seem to remember he's been a bit of a lightning rod to controversy. I could be wrong about that. But he's in Europe, and my focus is more US by both proximity and necessity.

If no one here can speak about him in detail, you may wish to check out LymeNet Europe; I'm pretty sure there's discussions about him there.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
What do you think of the sequel overall? Worth checking? New info added? Glimmers of hope?

Hi Antares - I was going to post a few thoughts about it on this thread - http://forums.phoenixrising.me/inde...ur-skin-called-emergence-now-available.32108/ - in the next day or two. I'm still mulling (I find I talk less nonsense that way — not much less, but less). Definitely worth seeing, especially if you've seen the first. They are some fantastic moments in it. Will write more on that thread soon, if you want to follow it.

@duncan thank you. I wasn't aware of that site. Quick search on the name Laane and I immediately see what you mean about the "lightning rod"!
 

Hip

Senior Member
Messages
17,824
It may seem surprising to some, but while I'm convinced that the origin of my CFS was the unresolved borreliosis, I am open to the idea of a different mechanism that would make people sick after treatment.

I am glad you are open to the idea of a different mechanism, as things can conceivably be more complex than just the simple scenario of chronic infection being the ongoing cause of a disease. It may well be that this simple scenario is correct, ie, that chronic Lyme = chronic Borrelia infection. But it might also be that original infection triggered autoimmunity or some other immune dysfunction, and this then the cause of the chronic Lyme, not a chronic infection.

Or it might be a combination of the two: the original infection may have triggered some immune dysfunction, so that even when only a small amount of Borrelia remain in a chronic infection, there is an immune overreaction to these bacteria, leading to the symptoms of chronic Lyme.



On the other hand, there are around 270 peer-reviewed studies from researchers and universities all over the globe that prove the wily persistence of borrelia despite antibiotic treatment

Can you give me a link to this list of 270 studies, and a few examples of these studies, explaining how they go about proving the persistence of Borrelia after antibiotic treatment?

On the CDC website they mention the animal research finding persistent Borrelia in the tissues after antibiotic treatment, but as far as I am aware, studies like this are new and rare. So I'd be interested in knowing how these 270 studies proved the existence and persistence of Borrelia after antibiotic treatment.



the fact that borrelia creates biofilms to shelter itself from antibiotics and immune response

The creation of biofilms by bacteria is pretty common; it's by no means unique to Borrelia. The dental plaque that you see on your teeth is an example of a biofilm, in this case, resulting from by the various bacteria that live in your mouth. Though certainly the biofilm is going to hamper the action of antibiotics on Borrelia.

In case you are interested, you might want to look into the bioelectric effect, which is a phenomenon where an electric current will increase the efficacy of antibiotics against bacteria hiding in biofilms by 100 million times (see this post).

As a brief summary: if you take antibiotics, and at the same time pass a small electric current through your body, you may be able to increase the potency of those antibiotics against Borrelia bacteria in biofilms by 100 million times.

I suggested on this forum that Lyme patients might want to investigate this.
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
I am glad you are open to the idea of a different mechanism, as things can conceivably be more complex than just the simple scenario of chronic infection being the ongoing cause of a disease. It may well be that this simple scenario is correct, ie, that chronic Lyme = chronic Borrelia infection. But it might also be that original infection triggered autoimmunity or some other immune dysfunction, and this then the cause of the chronic Lyme, not a chronic infection.

Or it might be a combination of the two: the original infection may have triggered some immune dysfunction, so that even when only a small amount of Borrelia remain in a chronic infection, there is an immune overreaction to these bacteria, leading to the symptoms of chronic Lyme.
Yes, I'm most definitely open to the idea, and I'm willing to hear any sides on this debate. That said, they have not been able to prove any specific auto-immune processes or mechanisms caused by Lyme; on the other hand, the studies that show persistent and abx refractory Lyme continue to come out, one after another.

In my personal opinion --just speculation, nothing but my own thoughts based on what I have felt and experienced in the last 16 years-- I think it could be a mixture of both, similar to the last scenario that you suggested: borrelia has mechanisms to evade the immune system, and can persist despite abx. Our bodies go in high gear fighting an dangerous infection that never goes away, to the point of exhaustion, and remains alert to even the last remaining spirochete. I'm a firm believer that my ME/CFS immune dysfunction is the result of this never ending war, a nasty loop. That's probably why my NK cell count and function are severely decreased, while my B-cells remain overactive and in high gear. My ME/CFS doctor doesn't discard this theory, while still favoring a potential viral cause to this mess.

That said, I know that my symptoms and experience are not unique, rather the norm amongst thousands and thousands of people that were infected by the Lyme spirochete. Where there's so much smoke...
Can you give me a link to this list of 270 studies, and a few examples of these studies, explaining how they go about proving the persistence of Borrelia after antibiotic treatment?

On the CDC website they mention the animal research finding persistent Borrelia in the tissues after antibiotic treatment, but as far as I am aware, studies like this are new and rare. So I'd be interested in knowing how these 270 studies proved the existence and persistence of Borrelia after antibiotic treatment.
That's a number often cited by ILADS and Norvect, and it includes studies that point at Lyme and biofilms, immune evasion, antibiotic resistance, tissue penetration, growth in sinovial and spinal fluids depite abx, etc. All those studies deal with the persistence of Lyme disease. ILADS may have a more updated list, but here's the one from Norvect (which initially listed 230, and now 273):

http://norvect.no/230-peer-reviewed-studies-show-evidence-of-persistent-lyme-disease/

The creation of biofilms by bacteria is pretty common; it's by no means unique to Borrelia. The dental plaque that you see on your teeth is an example of a biofilm, in this case, resulting from by the various bacteria that live in your mouth. Though certainly the biofilm is going to hamper the action of antibiotics on Borrelia.

In case you are interested, you might want to look into the bioelectric effect, which is a phenomenon where an electric current will increase the efficacy of antibiotics against bacteria hiding in biofilms by 100 million times (see this post).

As a brief summary: if you take antibiotics, and at the same time pass a small electric current through your body, you may be able to increase the potency of those antibiotics against Borrelia bacteria in biofilms by 100 million times.

I suggested on this forum that Lyme patients might want to investigate this.
That's a very interesting fact, thanks for sharing. I didn't know about the bioelectric effect, but I find it fascinating. I wonder if some of the effects of electromagnetic pulses (aka: rife and similar devices) may be related. I may dust off my old electrotherapy TENS machine next time I go on a new antibiotic protocol. I got it when i had a major surgery years ago, but this may put it to good use again.
 
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Hip

Senior Member
Messages
17,824
That's a very interesting fact, thanks for sharing. I didn't know about the bioelectric effect, but I find it fascinating. I wonder if some of the effects of electromagnetic pulses (aka: rife and similar devices) may be related. I may dust off my old electrotherapy TENS machine next time I go on a new antibiotic protocol. I got it when i had a major surgery years ago, but this may put it to good use again.

Yes, in this post I speculate that electromagnetic pulses from zapper machines and suchlike (which induce an electric current to flow in the body tissues), may kill bacteria in biofilms via this bioelectric effect. However, this would only work if the individual was taking antibiotics. With the bioelectric effect, the electric current passed through your body does not kill biofilm bacteria on its own, but rather makes the antibiotic you are taking 100 million times more lethal to these bacteria hiding in biofilms, which is a huge increase in potency.

I also discuss in that post the limitations of "zapper" machines as a means to apply the bioelectric effect. I think the problem is that zappers only cover a small area of the body; whereas the method I used, where I passed an electric current through my entire body while I was taking a bath (this is called a galvanic bath), thus targeting biofilm bacteria anywhere in my body and nervous system, this method should work significantly better than the local effect of zapper machines. I found it very simple to set up a galvanic bath in my own bathtub, just using some electric wire and a 12 volt battery. I describe how I did this in the post linked to above.

If I had chronic Lyme, I would definitely be experimenting with the bioelectric effect. I speculate that bactericidal antibiotics which directly kill bacteria (rather than bacteriostatic antibiotics which just limit bacterial growth) would be the most useful to deploy in bioelectric effect therapy, as it would be best to kill these bacteria outright.

In fact, as an experiment, I did a week of daily bioelectric effect therapy, taking galvanic baths together with antibiotics, with each bath lasting around 1 hour, during which I passed this electric current through my body. During this week, I took ampicillin 500 mg and erythromycin 800 mg daily; I took the antibiotics 3 hours before my bath, to ensure they were probably absorbed into the body, ready for the electric current in the bath. My hope was this might improve my ME/CFS or IBS by killing some bad bacteria in my gut, or in my lymph nodes, or wherever.

However, at the end of a week of this daily bioelectric effect therapy, I noticed no overall improvement in any ME/CFS or IBS symptoms. But since I think my health problems are much more viral than bacterial, this lack of a positive result might be expected in my case. For chronic Lyme patients, though, this bioelectric effect therapy might offer benefits. I don't think anyone has ever tried the bioelectric effect for Lyme, apart from perhaps unknowingly, when they happened to use a zapper machine while they were on antibiotics.

One positive effect of the galvanic baths was that the electric current improved my ME/CFS fatigue, but this was only a temporary effect lasting just several hours after taking the bath.
 
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duncan

Senior Member
Messages
2,240
@Hip , Bioelectric therapy sounds interesting. I know I have heard of it or something similar. Patients with Lyme who find that conventional abx fail them, frequently end up searching for unorthodox therapy aids. Some of those alternatives may be good; some may be not so good.

One of the peculiarities of Lymeland is the vehemence with which alternative meds/therapies are attacked by the rank and file of mainstream Lyme. This willingness - or desperation? - to embrace solutions outside of those defined in the IDSA Guidelines is frequently characterized as unequivocal signs of foolhardiness or instability. The patients who use these therapies are labeled "Lymenuts", the clinicians who recommend or administer them, quacks or charlatans or mercenary fraudsters.

There may be an element of truth to that in some cases. But just as often, if not more so, the efforts are genuine responses to a market need. A caveat emptor proviso applies, though, because some alternatives haven't been proven, or may even be dangerous.

The problem is, patients have little recourse. There is no movement on the treatment research front. Treatment research is on hold. What research is being done is almost solely on acute diagnostics, or on producing a new vaccine. If you live in the US, or one of the many other countries which subscribe to treatment protocol rooted in IDSA dogma, and your Borrelia infection is not cured by conventional therapy, as a rule, you have no fall back solution, no treatment of last resort. If you are fortunate, your clinician may recommend a second round (this is highly unusual), or even a third - but then you have to have your insurance carrier approve the treatment, and that's not likely to happen.

The reason for this is the general rule of thumb that Lyme will be virtually always curable by treatment as defined in the IDSA Guidelines. Worse, once you have been treated with IDSA-recommended therapy, you no longer qualify as having Lyme. This is true regardless of subsequent diagnostics. Following treatments, irrespective of symptoms or diagnostics, all patients with persistent symptoms are now said to be sick with PTLDS. Antibiotics are not only not recommended for PTLDS, they are discouraged. Not only are antibiotics discouraged, but within the guidelines the authors actually list alternative therapies that should be avoided as not one of these therapies has been approved by, well, you guessed it, the IDSA authors who defined the only therapy is their rigid, er, selection.

Purveyors of alternative solutions are openly criticized, maybe even sanctioned. Patients who turn to them out of desperation are ridiculed or condemned.

So, any one who continues with a Bb infection after conventional therapy is pretty much out of luck.

Moreover, you can see this bias segue out of the deep patient trenches and up into research efforts - as in you will not find any research into new treatments for Lyme. This Lewis/Zhang offspring was an oddity. This freakish occurrence was greeted almost universally throughout Lymeland with celebration; not just for a new treatment approach, but because it got a known member of the Old Guard to sign on the dotted line that spirochetes may in fact survive conventional treatments.

Still, at the end of the day, and for the foreseeable future, you can pretty much rest assured that any alternatives not blessed with a seal of approval by the IDSA, will be revealed as folly, and jettisoned from acceptable medical society.
 
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Hip

Senior Member
Messages
17,824
The patients who use these therapies are labeled "Lymenuts", the clinicians who recommend or administer them, quacks or charlatans or mercenary fraudsters.

I can't say I am that familiar with the range of alternative therapies used for treating chronic Lyme. I tend to think it is a good idea for people to try out things, but if a professional is asking money for a treatment which does not really work, but he markets the treatment as something that should help, then that I think can border on dishonest.

Did you ever see Sam Malone's Lyme treatment using very low doses of the fly agaric mushroom, by the way? See this post. It led to dramatic improvements in her Lyme symptoms, but I understand that not that many other Lyme patients benefited from it. Certainly worth trying though. I did.
 

paolo

Senior Member
Messages
198
Location
Italy
Did you ever see Sam Malone's Lyme treatment using very low doses of the fly agaric mushroom, by the way? See this post. It led to dramatic improvements in her Lyme symptoms, but I understand that not that many other Lyme patients benefited from it. Certainly worth trying though. I did.

Hi @Hip, could you provide a supplier of low dose Amanita muscaria? Maybe you already did, but I can't find the right post.
 

Hip

Senior Member
Messages
17,824
Hi @Hip, could you provide a supplier of low dose Amanita muscaria? Maybe you already did, but I can't find the right post.

Here are three places in the UK where you can buy Amanita muscaria (fly agaric):

Fly Agaric (amanita Muscaria)
Fly Agaric (amanita muscaria) dried mushrooms
All Salvia | Fly agaric mushrooms

These places sell the mushroom as "not for human consumption"; if you eat it, that is you decision. Other mushrooms in the Amanita family contains some deadly toxins, so you hope that they have harvested the correct variety!

Amanita muscaria is legal in most countries. Note that at the full dose, Amanita muscaria will create an intense psychoactive drug trip, and I would suggest such a drug trip might be inadvisable for ME/CFS patients. Strong psychoactive trips are obtained with Amanita muscaria dried mushroom doses of 5 to 30 grams, but light trips can be had from as little as 1 gram of dried mushroom. See here. Though note that potency can vary significantly from one mushroom to the next.

Technically, Amanita muscaria is not a psychedelic like "magic mushrooms" (psilocybin mushrooms), but a dissociative.

If you stick to very low doses of Amanita muscaria (25 mg to 100 mg of the dried mushroom), this should avoid any drug trip. (Though be careful to buy the normal dried mushroom, and not the 25x extract, which is 25 times stronger by weight). You may need to get a weighing scale that weighs in mg. These can be bough for around $10.

I took Amanita muscaria dried mushroom doses of around 50 mg to 200 mg, and although this did subtlety affect my mind, it was more just a relaxed condition, certainly not a drug trip.

Amanita muscaria contains muscimol, which is a GABA-A agonist, and also a GABA-C agonist.

Amanita muscaria also contains ibotenic acid, which agonizes NMDA receptors among other things.

For psychedelic purposes, muscimol is considered the "good stuff" in Amanita muscaria, and ibotenic acid the "bad stuff". See this article. Ibotenic acid can cause nausea, but if you are taking very low doses of Amanita muscaria, I don't think this will be an issue. I did not have any problems.

Heat or UV light will convert ibotenic acid to muscimol, which is why these mushrooms are often dried in the oven at 170ºC. I read that DMSO will also efficiency convert the ibotenic acid to muscimol if left overnight even at room temperature. I am not sure if the dried Amanita muscaria sold online has been heated in an oven or not. I did not heat the Amanita muscaria I bought, I just ate them directly.
 
Messages
180
Why has a thread about an interesting study devolved into woomeister central? I'd love to see some real evidence that these electro-quack devices do anything more than issue placebo.

In case you are interested, you might want to look into the bioelectric effect, which is a phenomenon where an electric current will increase the efficacy of antibiotics against bacteria hiding in biofilms by 100 million times (see this post).

The two studies you linked were from the 90s and were researching the sterilisation of medical devices, a million miles away from suggesting that hooking yourself up to a battery will aid the destruction of a systemic infection in a highly complex organism.

I was once introduced to an admittedly lovely but clearly deluded woman (somewhat under duress I might add) who was basing her entire treatment strategy around using a rife machine. If she wanted to know if she had tuberculosis she would dial in the tuberculosis frequency (there is a frequency for almost every ailment ever recorded) and if she experienced a "herx" that would mean she had tuberculosis and would have to at once undergo extended treatment at that frequency. It may just be a coincidence that the people who use these therapies are invariably nutcases, but I am doubtful to say the least.
 

Hip

Senior Member
Messages
17,824
The two studies you linked were from the 90s and were researching the sterilisation of medical devices, a million miles away from suggesting that hooking yourself up to a battery will aid the destruction of a systemic infection in a highly complex organism.

Yes, the studies were focused on the sterilization of bacterial biofilms on medical devices, but there is no reason why the bioelectric effect would not equally apply in living tissues. Provided you apply an electric current at the appropriate level through those tissues, the bioelectric effect should be able to destroy bacteria in biofilms inside the human body.

Now it could be that in the case of Borrelia, it is not the bacteria hiding in biofilm that is the major issue, but rather the forms of Borrelia that are thought to live inside human cells. As far as I am aware, the bioelectric effect will not touch these. However, it may well be that applying the bioelectric effect to destroy Borrelia in biofilms will have a very useful effect in chronic Lyme.

The application of the bioelectric effect to chronic Lyme has not been tried, as far as I am aware, and if I had Lyme, I would certainly be trying it. There may of course be some safety issues with this; though the kind of electric currents required are within the range used by TENS machines, so this suggests it is safe.
 
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