Would you try a Lyme disease treatment ?

[Carl]

#### Increased Digestive Permeability [IDP] ####

I would love to.

I started by slowing reducing starchy carbs, which are the worst offenders in dysbiosis. Then as I was able, slowly added in probiotics, some antibacterial herbs, then prebiotics. This has all been a slow process, that I have built on, over the last 2 years and 4 months.

Although the time and effort I have put in, in the last 2 years, has brought me from moderate CFS, to mild CFS!

The other thing I've learned is that treating mitochondrial dysfunction and low grade inflammation in the brain(as found by Jarred Younger), greatly minimizes my side effects from this protocol.

Many people make the mistake of giving up on treating the gut because the antibacterial herbs that are needed to kill off the bad bacteria, usually cause a worsening of symptoms.

Which makes sense, if Chris Armstrong is right (and I think he is ) and LPS are causing CFS.

Because when you kill off the bad bacteria, the LPS which are in their outer cell membranes, increase the level of LPS in the bloodstream, which causes a worsening of symptoms. Because it causes an increased immune response.

LPS are used by researchers to promote inflammatory processes. LPS is very harmful but it is not the sole thing wrong. Leukotrienes can also be elevated which affect mitochondrial and immune system function. However LPS itself does not cause CFS! IDP is what causes CFS and that is caused by an infection in one location of the digestive system which is biofilm protected and can have varying degrees of resistance. Some micro-organisms are less resistant than others and can be destroyed more easily, whereas others are extremely resistant even without their biofilm which I have removed on multiple occasions. So far I have not managed to destroy them but I did manage to destroy a large part of another infection closely related to the primary one which I believe is gram positive. That fell to reduced colloidal silver without treating the biofilm. It produced an intense discomfort in my digestive system in the location where I know they reside. That reduced my digestive permeability in two connected locations, the primary location and the secondary ie right transverse colon which is where IBS is usually located. BTW some bacteria can reduce silver ions and deactivate silver to prevent it from damaging them.

I have 6 biofilm protected infections which all contribute to my IDP. My underlying condition is very severe and I would be bed ridden if I did not manage my eating to counteract the effects.I have managed to destroy approximately 2/3 of the largest infection which has significantly reduced my digestive permeability. No L-Glutamine was required, my digestive system healed in around 15 minutes and the discomfort disappeared.

I believe that a [leaky] gut is a constant source of systemic bacteria reinfection creating an endless loop of chronic inflammation(immune response). Maybe there is a reason why some people are running so good on a carnivore diet - by reducing bacteria favorite source of food(starch and fiber) to zero they finally break the circle.

I agree with what you say, except for the term "Leaky Gut". "Leaky Gut" is normal and everyone has it to some degree. It is the degree which matters. A perfect uninfected digestive system is leaky by nature. It is the IDP which is the most important factor in CFS, a relative increase which promotes inflammatory processes. IDP causes Immune system dysfunction which can lead to viral replication.

I honestly don't believe in Lymes diagnosis. However, I think a tick bite can trigger an underlying pathogen/virus that was already there. Also..............I have read about too many people's experiences with long term antibiotics for Lymes...........that only made them worse.

Lyme is well known and recognised. There is no dispute about the existence of Lyme disease. Chronic lyme is another matter but can be explained by the resistance of the borrelia bacteria in it's multiple states.

I came into this topic because just over 2 years ago, I broke my leg and while attempting to balance on my good leg to peg out washing, I fell over and lay on the ground for some seconds. Something bit the back of my head just inside the hairline. Following that I became significantly worse. All the methods that I had used for decades to virtually eliminate CFS symptoms no longer worked and it became a constant struggle just coping with daily life. There was no visible ring at the infection site but with my immune system dysfunction that is not really surprising. BTW it is not 50% of people that do not show a ring, it is more like 20-30%.

I went to my doctor for a test and the student doctor that I saw refused to perform a test because I had not developed a ring! He was not familiar with my case and I did not think to tell him about my immune dysfunction and how it might of prevented the display of a ring.

I have done some research on lyme treatment. I would not want to use antibiotics because of the problems that they can cause altering the gut microbiota. I have come up with the following two research papers done by the same group. So far I have not yet tried them. I intend using them in combination with some Chinese herbs which I have which are known to be effective against mycoplasma sp. which is what I suspect is responsible for my CFS.

Identification of Essential Oils with Strong Activity against Stationary Phase Borrelia burgdorferi
Selective Essential Oils from Spice or Culinary Herbs Have High Activity against Stationary Phase and Biofilm Borrelia burgdorferi
This might also be helpful>
How to Make Liposomal Essential Oils at Home: Ultrasonic Method Tutorial

ATM I am a bit stuck finding Efflux Pump Inhibitors to use against the bacteria, both suspected mycoplasma sp, borrelia and other unknown infections.

Mycoplasma sp. and many others do use ABC efflux pumps and I do have reserpine EPI which is the reference EPI. However I am very reluctant to use it because of it's side affects ie depression and bradycardia among a list. Tu Si Zi already causes bradycardia, my pulse is around 55-60 bpm so I cannot afford to lower it much further.

 

[Dechi]

BTW it is not 50% of people that do not show a ring, it is more like 20-30%.

I double checked my source (a local Lyme association) and it says 50% of people don’t remember being bitten or showing a ring. Maybe 30% didn’t have it but 50% don’t remember, who knows...

 

[Carl]

I double checked my source (a local Lyme association) and it says 50% of people don’t remember being bitten or showing a ring. Maybe 30% didn’t have it but 50% don’t remember, who knows...

I would think that the 50% is those that do not remember. A web search that I did a long time back claimed that 20-30% do not get a bulls-eye rash and wikipedia backs that up.
https://en.wikipedia.org/wiki/Lyme_disease

 

[valentinelynx]

Yes, I did try several Lyme treatments as well as Bartonella treatments. I got some benefit from the antibiotics: specifically, decreased pain and swelling in my joints, especially in the hands. Treatment did not resolve the rest of my symptoms.

If you take the time to read the science behind the persistence of borrelia bacteria infections, it's convincing. Those who deny the possibility are overlooking the research, some of which is summarized here.

 

[duncan]

Yes, I did try several Lyme treatments as well as Bartonella treatments. I got some benefit from the antibiotics: specifically, decreased pain and swelling in my joints, especially in the hands. Treatment did not resolve the rest of my symptoms.

My experience as well, except more the knees than the hands.

So there can be trade-offs, @Dechi . If studies and case studies demonstrate anything, response to treatment is all over the place. For me, it helps a lot with knee inflammation and pain, but it devastates my balance, and makes it hard to think with any clarity. But I consider myself a treatment failure; there are plenty reports out there of treatment successes, too, perhaps most famously, those families in Cure Unknown.

I'd try to get a clearer picture vis-a-vis labs with a WB after trying to provoke a response. Also, I'd ask the doctor if he tested for bartonella and babesia. Bartonella in particular can mimic Lyme. Of course, I try to always make sure insurance covers the tests...

Check with your doctor about all of this. No one wants a diet of abx unless they absolutely cannot avoid it.

 

[Carl]

It might be worth having a look at Stephen Harrod Buhner's Lyme books, there are a number of them so choose appropriately. Look on Amazon for contents and reviews.

 

[Spiderbaby]

If I was given the choice again I would not do the Lyme antibiotic protocol. I was 60-65% of my operating levels before a years worth of Doxy/Azrith, down to 40% at the end of it and I still havent recovered from the damage the treatment did to my microbiome to the gut itself.
If you already have gut issues (IBS etc) commencing an extended antibiotics protocol I believe could make things a lot worse for you.
It all depends on how much you trust your doctor, tests which they have performed and whether the Lyme diagnosis is solely based on these tests or is a clinical symptoms one.
If you feel like persuing a Lyme protocol is something you really want to try, perhaps investigating some of the herbal protocols out there might be a better avenue to pursue, something I wish I would have done before embarking on the antibiotic protocol.

 

[Dechi]

If you feel like persuing a Lyme protocol is something you really want to try, perhaps investigating some of the herbal protocols out there might be a better avenue to pursue, something I wish I would have done before embarking on the antibiotic protocol.

I’m thinking about it, but herbal protocols seem to be around 200$/month, whereas antibiotics will be a fraction if that price. (Herbs are not reimbursed by medicare).

 

[Spiderbaby]

I’m thinking about it, but herbal protocols seem to be around 200$/month, whereas antibiotics will be a fraction if that price. (Herbs are not reimbursed by medicare).

There is that to consider too, its a similar situation if you pursue a herbal protocol for SIBO as well, the herbal preparations that are marketed are rather expensive in comparison to what the individual herbs would cost on their own.
You could pursue a similar herbal protocol to the expensive products, using something like Cat's claw on its own initially to see how you react to it. I am sure there are people on here who know more about doing a DIY protocol than I do.
Overall though I would weigh up the cost of the antibiotics/herbals to the overall cost to your body of using an antibiotic protocol.

 

[Dechi]

Overall though I would weigh up the cost of the antibiotics/herbals to the overall cost to your body of using an antibiotic protocol.

Yes, that is to be seriously taken into consideration.

 

[Learner1]

My daughter has had chronic Lyme and Babesia. She was on 8 minths of and, which didnt help and is now doing the herbal route. From what I've and seen, a vombinatiin of tools is best to tackle Lyme.

I'm curious if there are people here who have had long-term antibiotic treatment, either for lyme or other reasons, and what their experiences have been.

I was on 6 weeks of oral azithro/rifampin for chlamydia and mycoplasma pneumoniae. It didn't faze them. Then I was put on IV azithro 1x a week for 2 months by one doctor, them my ME/CFS specialist (not KDM) put me on 4 months of 3 day a week azithro/doxycycline rifampin. I took probiotics and prebiotics throughout. By the end of it, my gut was down to 17% diversity and it's taken 18 months to improve it. I think id choose to do it again.

However, for Lyme, maybe the Buhmer herbs msy be better. I'd say any money you save with the antibiotics would be spent on pre and probiotics to fix the damage.

Rifampicin targets small intestine bacteria overgrowth, it maybe an oportunity if you have this condition?

Rifaxamin is for SIBO. Rifampin is an antibiotic that helps the others.

Rifampin specifically inhibits bacterial RNA polymerase, the enzyme responsible for DNA transcription, by forming a stable drug-enzyme complex with a binding constant of 10(-9) M at 37 C. The corresponding mammalian enzymes are not affected by rifampin.

Knowing what I know now, I would have started taking supplements to support my mitochondria and lower brain inflammation, before starting my gut protocol.

What works for one person isn't always best for the next. What is helping me the most with my mito. and brain inflammation(BI) is, high dose fish oil-(epa/dha) for BI. High dose BCAA's, coq10, B-1 and alpha lipoic acid for improving mitochondrial function.

Supporting mitochondria can be useful. My tests never show I need EPA or DHA, so high dose fish oil would be bad for me. I do use a mixed phospholipid powder that has all the correct phospholipids in the ratios used in our membranes, called NT Factor. B6 is also needed to synthesize membranes.

Folate, B12, and vitamin C can work to reduce peroxynitrites which damage membranes in the first place. They are also used to make and recycle glutathione, so B2, B6, magnesium, and molybdenum are needed in addition to B1, snd many are short in cysteine or glycine and take glycine and NAC, n-acetyl-cysteine.

ALA can recycle both fat and water based antioxidants but it van also mobilize toxins sequestered in mitichondria, so go slow.

Also, I'd ask the doctor if he tested for bartonella and babesia. Bartonella in particular can mimic Lyme. Of course, I try to always make sure i

Good idea, or the other typical coinfections, which can all contribute to illness. Best to know what you're going after do you get the right treatment.

You might also look into dapsone, recommended by Richard Horowitz.

It might be worth having a look at Stephen Harrod Buhner's Lyme books, there are a number of them so choose appropriately

Good idea!

I’m thinking about it, but herbal protocols seem to be around 200$/month, whereas antibiotics will be a fraction if that price. (H

Unfortunately, you get what you pay for... If I were in to our shoes, id carefully research all the options and thoughtfully formukate a protocol, as once you're down the path, going back to where you are now may prove difficult. And make sure you do indeed have Lyme.

Best wishes...

 

[Dechi]

And make sure you do indeed have Lyme

How do I do that ? I thought it was impossible to prove 100% or even close ?

 

[duncan]

My daughter has had chronic Lyme and Babesia. She was on 8 minths of and, which didnt help and is now doing the herbal rout

If you're in the PNW, I'm assuming B duncani? You've seen the most resent pediatrics' study on the efficacy, or lack thereof, of conventional antiparasite meds on B duncani, @Learner1 ?

How do I do that ? I thought it was impossible to prove 100% or even close ?

Not impossible but highly unlikely once the bulls-eye rash is gone. PCR is direct testing, but odds are against you getting a hit because Lyme sequesters away from blood. To culture it after the bulls-eye or ACA is gone, eh, it happens with synovial fluid (so can PCR), but you have to have Lyme in your knees, and even then odds are against it.

So indirect testing is the usual way. And if you test negative to begin with, you may wish to seek to elicit a response. If you have Bb somewhere, see if you can make it poke its head out long enough to get a glimpse...

 

[Dechi]

And if you test negative to begin with, you may wish to seek to elicit a response. If you have Bb somewhere, see if you can make it poke its head out long enough to get a glimpse...

Thank you. If I understand correctly, starting the antibiotics for say, 2 weeks, might elicit a response, and then I would see that response, if any, by doing a Western Blot ?

 

[duncan]

Yes, but you might have trouble getting permission to get a WB if your ELISA remains negative. There is no law against that, but there are guidelines, diagnostic protocols, and most doctors are loath (and fearful!) to go against them.

To increase your odds, you may wish to request a C6 ELISA in addition to your conventional ELISA. Or maybe your doctor will agree to order you a WB regardless. Check with him/her. Makre sure you're covered insurance-wise, too.

BTW, there is another direct testing method. That is a urine antigen test, which I think is very cool, but I'm concerned it has really only proven itself in early Lyme. Even in early Lyme, I think conventional Lyme sorts remain leery.

ETA: If you score a positive on the C6, that is sufficient in most diagnostic circles to demonstrate you've at least been infected in the past. It was marketed and positioned as a replacement to the 2T, but hasn't gotten enough traction, at least not yet in the US. I still prefer the WB because of the level of detail it provides the patient and the doctor..

 

[ljimbo423]

How do I do that ? I thought it was impossible to prove 100% or even close ?

I can't answer for Learner1.

My feeling is that testing is fraught with ambiguity for chronic Lyme. Even if I tested positive for it, that doesn't mean I have it or any symptoms from it-

Patients may have positive Lyme serology for a variety of reasons, including asymptomatic seroconversion, cross-reactive antibodies generated by other infectious or inflammatory diseases, or a previous treated episode of Lyme disease; asymptomatic seropositivity is well-described in endemic areas.25,29,30,33–40

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/

This feels to me like a very difficult decision for you. Best of luck in whatever you decide!

 

[pattismith]

Rifaxamin is for SIBO. Rifampin is an antibiotic that helps the others.

you are absolutely right! It seems I mixed these two antibiotics... rifampin seems an interesting weapon against Lyme and Chlamidia Pneumoniae

 

[duncan]

rifampin seems an interesting weapon against Lyme and Chlamidia Pneumoniae

Bartonella, too.

 

[bertiedog]

It might be worth having a look at Stephen Harrod Buhner's Lyme books, there are a number of them so choose appropriately. Look on Amazon for contents and reviews.

I have both of his books and have started to reread them. In the second book especially he goes into great scientific detail of what is happening in the body once one has been bitten. I was amazed yesterday to read his writing on guess what? ...IDO1 AND IDO2 as per @HTester plus the connection to tryptophan plus one ends up with high quinoline and kynuerenine only I am pretty sure that he says that in chronic Lyme one would benefit from extra tryptophan which I believe is the opposite of what Dr Phair thinks.

The other thing that stood out for me was lots of discussion of what the borrelia bacteria do to the COLLAGEN and how it degrades it all over the body and brain and is responsible for many of the symptoms. I am only a 1/4 of the way through the latest book and this is what has stood out for me so far.

I did have a positive Lyme tests from a German Lab which is licensed in that country but not recognised by the NHS (not Armin's lab but he was the director at the time of the German lab) so I have tended to ignore the results. However after rereading part of Stephen Buhner's book it really makes me think it is highly possible I do have chronic Lyme especially as I regularly went with my dogs to the New Forest where Lyme is endemic.

I also have the collagen issue and the high quinolate and kynuerate but I am only 1/4 way through the book!

Pam

 

[Learner1]

If you're in the PNW, I'm assuming B duncani? You've seen the most resent pediatrics' study on the efficacy, or lack thereof, of conventional antiparasite meds on B duncani, @Learner1 ?

It was acquired in Vermont.