Low Dose Immunotherapy (LDI) for Chronic Lyme.

Remy

Administrator
I've recently started a new treatment protocol for chronic Lyme disease called Low Dose Immunotherapy (LDI).

The premise behind LDI is rather complicated and not all that well understood at this point but some people are having excellent results regardless. At lot of the success seems to depend on the skill of the practitioner though. Most people seem to have the best luck going straight to the one who has adapted this treatment, Dr Ty Vincent in Alaska. He does Skype consults (which are expensive at $500) but the treatment overall is one of the most affordable I've ever tried. His prices for the sublingual antigens (more on this later!) are very, very reasonable. Usually $100 for a shipment which can last up to 8 weeks, more or less, depending on response.

LDI is derived from Enzyme Potentiated Desensitization, developed in the UK by Dr Popper. He showed that when you mixed an antigen in with beta glucoronidase, an enzyme, it made the mixture immunologically active. Using minute amounts, he was able to train the immune system not to overreact to common antigens with a cytokine response that caused symptoms of many types of illness. Basically, he trained the immune system to tolerate the antigens the way a healthy person would respond instead of creating an overreactive sickness type of response.

The history is not all that important but basically the government regulators got involved and shut down EPA for no good reason. So it came to this country with another name, LDA, pioneered at that time by Dr Shrader. LDI is the next evolution of that treatment.

LDI can treat just about any condition that involves an over-active immune response. Some of those conditions include standard allergies like pollen, dogs, cats, etc, food allergies, Lyme disease and other bacterial infections, EBV and other viral infections, migraines, IBS/IBD, arthritis, fibromyalgia, cystitis, endometriosis...the list goes on and on.

In a nutshell, LDI creates an increased Treg response which shuts off the inappropriate response by your CD4/CD8/B cells to the antigen. The theory is that it restores your natural immune function so that your immune system acts correctly when in the presence of antigens, whether from self (autoimmune) or pathogen.

If this theory is true, it represents a MAJOR paradigm shift from the infection/pathogen model. People are concerned that LDI will turn off the immune response and let pathogens run amok, but that isn't how it works. The theory is that the body is responding as if pathogens are still there with an inappropriate immune response after the actual pathogen threat is gone. It's not turning off properly through the Treg response. LDI turns it off again.

When I took the Neuroscience Advanced Cytokine profile and discovered my immune system was wildly overactive, it was a major turning point for me in my approach to treatment. Prior to that, it had been based on the stimulate and kill theory using antivirals/abx and immune stimulating herbs and meds. Now I'm trying to balance and tolerate instead and reduce inflammation.

It should be noted that this treatment is not for ACUTE Lyme; that needs antibiotics. This is for chronic Lyme (or other infections) when you have taken antibiotics for months or years and still have symptoms.

I'll include transcripts from a couple of interviews with Dr Ty for anyone who wants to learn more.
 

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Who Me?

Well-Known Member
My Skype appointment is today at 1:00! I'll be cured!

On his website Dr. Vincent list's other doctors who have learned his protocol but I have heard from others that many are not sticking to his approach and using much higher doses, or subcut not oral.

That interview is awesome.
 

loki

Well-Known Member
wiki:
EPD is considered experimental by some doctors and allergists. However, there is evidence for the efficacy of EPD in the treatment of hay fever and other conditions as a result of nine placebo-controlled, double-blind trials involving 271 patients. These trials showed a significant improvement in the symptoms with probabilities of 0.001 to 0.01 (a chance of one in a thousand to one in a hundred that the results of the trial would be seen by chance alone assuming EPD had no effect).[7][8][9][10][11][12][13][14] However, one trial involving 183 patients published in the British Medical Journal showed no overall effect.[15] Dr Len McEwen, inventor of EPD, speculated[16] that the reason for the failure might have been that the beta glucuronidase enzyme preparation was inadvertently heated or frozen during storage in the hospital pharmacy, as it is sensitive to the storage temperature and enzyme from the same manufactured batch had been used to treat a number of patients successfully. However, there is no evidence available after the event to test this theory as the remaining trial materials were destroyed immediately after the trial ended.
 
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weyland

Well-Known Member
If this theory is true, it represents a MAJOR paradigm shift from the infection/pathogen model. People are concerned that LDI will turn off the immune response and let pathogens run amok, but that isn't how it works. The theory is that the body is responding as if pathogens are still there with an inappropriate immune response after the actual pathogen threat is gone. It's not turning off properly through the Treg response. LDI turns it off again.
In the case of EBV or any other herpes virus this of course wouldn't be true. The threat is never gone and without adequate involvement of T lymphocytes you will experience reactivation of the virus.

This is for chronic Lyme (or other infections) when you have taken antibiotics for months or years and still have symptoms.
This assumes that chronic Lyme (or PTLDS) isn't actually caused by Borrelia persistence which is one of the major theories.
 

Remy

Administrator
The threat is never gone and without adequate involvement of T lymphocytes you will experience reactivation of the virus.
Right, but the vast majority of the world lives in harmony with EBV and other herpes viral infections. They aren't sick and the infections aren't running amok. LDI isn't about shutting down the immune response completely. It's about tolerance through appropriate Treg function.

I think the same is true for Lyme. I bet if you tested all the people, a similarly high percentage would present with Bb spirochetes as test positive for EBV. But most people aren't sick with chronic Lyme so something else must be going on.

So there is a balance to be found...and that is what LDI purports to do.
 

weyland

Well-Known Member
Right, but the vast majority of the world lives in harmony with EBV and other herpes viral infections. They aren't sick and the infections aren't running amok. LDI isn't about shutting down the immune response completely. It's about tolerance through appropriate Treg function.
Fair enough. This still assumes that there is no difference between those that live in harmony and those that don't, such as virulence of serotype, location of infection, quantity of infection (viral load), or other immune factors besides T cell response.
 

Who Me?

Well-Known Member
Just finished with my Skype with Dr. Vincent. He's starting me on CMV and EBV and Strep, food and skin antigens for my psoriasis. He told me eventually I should be able to get off Famvir.

@Remy @weyland We talked about how everyone is exposed to viruses but you have to look at the total health of the person too. That's where I've been let down.

Don't ask me technical questions. Can't answer.
 

Issie

Well-Known Member
I'm curious about this. I have chronic Lyme and Protomyzoa Rehumatica. Both form biofilms. My worries would be if the immune system is supressed (to much) from fighting the organisms, might this cause more biofilm formation and then more clogging of veins and arteries?

Recent article from Dr Ross, questions this too. He feels it may be beneficial in that it may also calm the cytokines to slow release. But he feels we still need to fight the organisms with either antibiotics or herbals.

I'll be interested to hear how it goes. For now, I will stick with herbals and adding back Doxy after a 6 month break. I'm also doing cleanses.

The other big find with me is mold/fungus that has invaded my organs. I had a thyroid nodule biopsy and it was found there. This type of fungus causes tumors in the body. So I'm working on getting that eliminated.

One thing I was told that would happen as I cleared some of the mold out of my body, is my eyes would get better. They have. From my ordering new glasses, to getting them.....he had to lower the power and astigmatism correction. So there's proof of what I'm doing is working. I just have to be patient and hold the course.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This looks really intriguing. When I first got sick I was directed to a doctor who used injectable antigens whose dose was painstakingly determined. It didn't work for me but I met some people whose health was turned around by it. I'll be really eager to hear how it turns out.

Who knows how the pathogen question will turn out but my guess - given the enormous number of pathogen triggers found thus far - that in many cases the pathogen sent the immune system into a whirlwind and its that whirlwind is the problem. Time will tell - I hope!
 

Remy

Administrator
the pathogen sent the immune system into a whirlwind and its that whirlwind is the problem.
I totally agree. And I think it can also be any stressor...not just a pathogen, though that is likely one of the more common stressors.

My worries would be if the immune system is supressed (to much) from fighting the organisms, might this cause more biofilm formation and then more clogging of veins and arteries?
See, that's the thing people don't understand. LDI does not suppress the immune system. It creates tolerance, like normal, healthy people have. We are really more bacteria than human, after all.

To accept that LDI might work, one has to totally rearrange one's thinking and that has been really hard for a lot of people (including a lot of doctors).

It isn't about the pathogen/stressor, it's about the cytokine storm the pathogen/stressor leaves in it's wake after the immune system has (over)done it's job.

That's why a lot of people with MECFS rarely get "normal" sick...because our immune systems are already in overdrive.
 

Who Me?

Well-Known Member
It's the same idea as allergy immune therapy or LDA. If you had an allergy to cats, they would give you the allergen in low doses to desensitize you so that when you are around cats, you won't react. This is Dr Vincent's theory (dumbed down hugely). It desensitizes you to the things that you are reacting to. It doesn't suppress the immune system. Is that right @Remy

I met with Dr. Vincent on Wednesday. He wants to know what happened leading up to getting sick, what have I been exposed to, chemicals, molds, environmental allergies, toxins. What have I taken that has worked and what hasn't. Then he customizes the LDI to my particular circumstance. He doesn't take some powerful drug and hope it helps everyone.

Considering there is nothing else available, and this won't kill me or give me cancer, and I think his theories make a ton of sense, I'm going with it.

And I do not have Lymes.
 

Issie

Well-Known Member
It's the same idea as allergy immune therapy or LDA. If you had an allergy to cats, they would give you the allergen in low doses to desensitize you so that when you are around cats, you won't react. This is Dr Vincent's theory (dumbed down hugely). It desensitizes you to the things that you are reacting to. It doesn't suppress the immune system. Is that right @Remy

I met with Dr. Vincent on Wednesday. He wants to know what happened leading up to getting sick, what have I been exposed to, chemicals, molds, environmental allergies, toxins. What have I taken that has worked and what hasn't. Then he customizes the LDI to my particular circumstance. He doesn't take some powerful drug and hope it helps everyone.

Considering there is nothing else available, and this won't kill me or give me cancer, and I think his theories make a ton of sense, I'm going with it.

And I do not have Lymes.
I can see that it may make sense and be effective for some things. I understand allergy type treatments, with introducing a small amount of the offender to trigger the immune system to come to peace with it and not over react. But with a few things, certain types of protozoa, they form biofilms in the veins and arteries. Im not sure I want my body to come to peace with them and accept them on the fear they will continue to replicate and form more biofilm. Dr Fry released a paper last year in London, proving that some of the plaque removed from a heart bypass was in fact biofilm with these organisms in it. It can clog up your veins. I'm trying to break down biofilm and have my immune system eradicate these organisms. I'm all for lowering cytokine over expression and helping pain and herxing. But I don't want my body to live in peace and accept these protozoa. I find it interesting that Dr Ross has come to that conclusion also and feels we need to continue to try to "kill" these pathogens.

I'm glad you don't have Lyme. The latest thought is there is no complete "cure" when it's a long time chronic thing. Dr Fry hasn't discovered any long term "cure" for Protomyzoa Rehumatica. We have to continually tweak things to try to keep as level as possible.

Issie
 

Remy

Administrator
But I don't want my body to live in peace and accept these protozoa. I find it interesting that Dr Ross has come to that conclusion also and feels we need to continue to try to "kill" these pathogens.
But what if there are no pathogens...or at least not any more than a normal, healthy person has with a normal, healthy immune system keeping them firmly in check?

Are we trying to kill pathogens long after the infection has passed?

That's what Dr Ross doesn't understand. He is still stuck in the old mindset. And maybe there is a pathogen still undiscovered and he is right to stay stuck.

But that's why I say it's a paradigm shift. LDI is not the choice for active infections. It's the best choice for retraining the immune system that is still stuck on the battlefield years after the war is over. Only time will tell.
 

Issie

Well-Known Member
But what if there are no pathogens...or at least not any more than a normal, healthy person has with a normal, healthy immune system keeping them firmly in check?

Are we trying to kill pathogens long after the infection has passed?

That's what Dr Ross doesn't understand. He is still stuck in the old mindset. And maybe there is a pathogen still undiscovered and he is right to stay stuck.

But that's why I say it's a paradigm shift. LDI is not the choice for active infections. It's the best choice for retraining the immune system that is still stuck on the battlefield years after the war is over. Only time will tell.
That may be a valid hypothesis. Something to consider. But I don't think there has yet been enough testing to prove the end response for these particular protozoa. If there is a virus or other organism that doesn't form biofilm, I'd be one of the guinea pigs. But with a proven positive and pictures of my blood forming significant biofilm, I'll do the wait and see. I'm certain there will be those who will report their response both immediate and long term. I've dealt with this for most of my life, a little while longer - won't hurt me.

I am however, having good response with treating mold and doing other type cleanses. My low dose antibiotics and herbals worked for 2 years before my mold exposure. Then it was overload for me. Everything seemed to have quit working. I'm on the upswing again now.

Hoping you guys get good response. It takes fearless pioneers to try things. If it makes complete sense, I'm one of those all for experiment. But in this case, I still have reservations. But still open to the idea and hope that it works.

Issie
 

Issie

Well-Known Member
Biofilms can be viewed in the blood. I know of two ways. Dr Frys test with his special stain to find Protomyzoa Rehumatica. And a live blood analysis by someone who knows what they are looking for. (I heard of an Amish doc who DXd one of my POTS friends with it. Her treating it was making a huge difference for her, last time I spoke with her.) If there are biofilms they will have pathogens including virus, bacteria and protozoa, in them. It depends on how many biofilm formations and pathogens in them as to whether you would assume they aren't active and it's normal. That being said, Dr Fry has found the protozoa in some who don't appear to be sick. So it does go back to how active the immune system is and if it is keeping them subdued and they are not causing issues. I think time will tell. It could go either way. I'm hoping it goes in a positive direction. Then you can sign me up.

Cort, if you still have the pic I sent you of my biofilm formations with "significant " amounts, you can post it so people will know what it looks like.

Biofilm, is a very interesting thing to research. It is formed by only a few organisms.

Issie
 

Remy

Administrator
Here is a fairly technical paper on the theory behind LDI as proposed by Spanish medical student, Sergio Ballesteros. He has kindly allowed it to be shared here.

It is still a work in progress as the therapy develops, however, as is all science.

I'm also including a short summary of comments from the FB LDI group by Sergio...

I know I have written this many times, but I think it might be useful to do it again, for those who may have not read it:

These points are not theories, but facts clearly shown in the scietific literature:

1. Lyme symptoms are not caused by the bacteria. It is caused by our immune system.

2. Different approaches of antigen-specific-based-immunotherapy (to which EPD, LDA ad LDI belong) trialed for many autoimmune diseases (most of them thought or known to be caused by infections through "molecular mimicry") and some intracellular chronic infections, have demonstrated that this therapy not only induces tolerance, but also improves the immune system needed to kill the infections.

3. The point 2 has been shown for EPD in a few small double blinded-placebo based studies for allergies.

So, given that LDA and LDI are almost the same as EPD, while these 3 treatments work under the same principles of other antigen-specific-based-immunotherapy approaches, it could be theorized that the same findings could be applied to LDA and LDI.

I am not defending LDI. I am trying it myself with hope but also with huge uncertainty. However it is not rigorous to say things such as that LDI could debilitate the immune system in the long run... This is just not knowing enough immunology and not having reviewed the available evidence (Not talking about any patient here, obviously; I'm referring to doctors who are expressing ideas without enough rigor--and this rigor must be demanded to doctors, as it is their job).

Best!
Sergio
 

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Who Me?

Well-Known Member
My LDI is shipping Monday. Cmv, EBV and another skin combo for psoriasis.

I'll let you know when I'm cured.
 

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