Started LDI Treatment

I decided to go forward with LDI (Low Dose Immunotherapy). I listened to a really informative podcast on the subject which helped me make up my mind. Basically the approach is the same as immunotherapy for allergies. I am going to try and give a quick overview of LDI and please know that this is just what I have understood from listening to the podcast and from my doctor. My brain is very foggy so it is hard for me to remember and put my thoughts into words.

The belief is that Lyme Disease creates an auto-immune response in our bodies. This would explain why two people do not have the exact same symptoms since our immune systems are different. My doctor feels that the bacteria is not causing the symptoms I feel, but it is my immune response to the bacteria. LDI is supposed to re-establish immune tolerance by introducing a very low dose of dead bacteria (contains like 80 strains total of Borrelia, Bartonella, Babesia, Ehrlichia) mixed with an enzyme. Our body then learns to tolerate the bacteria. I believe the reason you have to dose every 7 weeks is because most our regulatory T cells only live for 55-60 days so we have to "re-program" the new cells. Here's a link to the podcast that can better explain it than I could:

https://itunes.apple.com/us/podcast/cutting-edge-health-wellness/id903291905?mt=2
(number 7)

As for my experience, I had my first sublingual dose on Friday. I started at C16. The only improvement I have is a noticeable decrease in my buzzing. This improvement was realized the same day as dose. I have had no improvement in numbness, fatigue, brain fog, night numbness, ear noise. It is early days so we will see how this goes.

I am not taking antibiotics, only multi-vitamin, vitamin d, vitamin c, probiotic, heavy metal detox and lots of other detox measures (baths, tea, dry brush, etc). The doctor does not want me to take antibiotics but I still struggle with the idea of leaving the bacteria alone. However, if my immune system is no longer reacting to the bacteria then it should get stronger and hopefully be able to handle Lyme & co. I am still toying with the idea of once I find my core dosage possibly implementing herbals like Japanese Knotwood, Cat's Claw, etc. Just need to read up more on everything.

Also, the belief is if I see no improvement with this then it is NOT lyme causing my symptoms. I thought that was interesting. And also they are starting to use this low dose approach for viruses like EBV and HHV-6.

It sounds promising, kyo07!!

I'm curious about this treatment - I have recently found out a LLND near me (3 1/4 hr drive) is now offering it.

Please keep us updated on your progress.

I was given some information on the LDI by a Facilitator of a Lyme Group not too far away from me.

It was a presentation by a Dr. who mentioned that there were a lot of rules - too many in fact he said.
He went on to say that many people refused to try the LDI because of the rules...and he found that even the people who didn't follow the rules got results.

I will see if I can find the information...and post some 'pieces' of it.

If possible, I would want to do treatment in conjunction with it...maybe not antibiotics, but herbs for sure.

From what I understand, the LDI is supposed to be stimulating your immune system to kill off the Lyme. So you don't want to add too much else, or you could have a severe herx. I know you say you don't want to ask your doc, but I wouldn't start herbs with LDI without asking someone...

I just hope it works that way Sarah! I thought LDI turned my immune system off to the bacteria so in turn it gets stronger because it's no longer fighting a losing battle. I have not found strong evidence that my immune system then kills off the bacteria, but that is what I would hope for. What kinds of tests could be performed to see if that is in fact the case. Possibly cd 57 (prior to treatment 41), and vitamin levels that Lyme lowers (my magnesium, b12, ferritin and d are a low)? I guess if I see an increase in any of those, as well as a decrease of symptoms, then it could indicate a decrease in Lyme & co. I would also like to repeat Igenex testing maybe in Spring just for my own curiosity. Let's hope this works.

I wrote a long post on my LDI update and my Internet Explorer shut down. Ugh. Anyway, took a booster last week and my buzzing went away completely again. However, have had some old & new things crop back up like palpitations (old), jaw pain (old) and jaw/teeth shaking (new), knee pain (old). Today I feel the buzzing in my feet on a very low level. So it was gone completely for 7 days this time which is 2 days more than the last time. This means I need a booster again and will probably do that on Sunday. I am doing a round of chelation right now and don't like to overlap (although I was told it's fine to chelate while on LDI). Nutramedix Pinella really helps with my jaw tightness. I am wondering if this is a herx of some sort. My detox has not been the greatest the last few weeks.

Had a Skype call yesterday with the main LDI doc himself. He wants to split my Lyme LDI out to separate Bartonella and Borellia (usually it contains Borellia and co’s in one). He believes my buzzing is Bartonella related and my dose for that is right on. I agree with this because when I took abx a few months back I did have a change in my buzzing when I took Biaxin/Plaquenil combo. I believe Biaxin hits Bart, so that makes sense. The rest of my abx were Borellia targeted. But my more Borellia-type symptoms have had no change, so he thinks we need to go stronger on the Borellia LDI . Fingers crossed. Probably won’t get the split doses for a week or so.

Since I am getting an almost immediate response with my internal buzzing, it is enough to keep me going with this.

Also, my LLNP ran some bloodwork last week and my CD-57 went up to 59. It was 41 in August. I had only been on LDI for 3 weeks prior to test, so I am sure the score is a reflection of the 10 wks of abx, supplements, parasite treatment, metal chelation, detox, etc. However, it will be an interesting gauge to see if it continues to rise while doing LDI. If it would happen to go south then I know I should probably get back on abx.

kyo07 - So are you on anything -anitibotics or herbs to target any infections while you do the LDI?

And did you follow all the strict rules that come with it?

"When you give the body a tiny amount of the bug that it can recognize - it's response can be corrected"

So, that's the part i don't get. How come the body recognizes that bug...but can't find the ones we already have? The ones we have aren't all hiding, are they?


I do not think you're making a wrong decision...the herbs and antibiotics will always be there if you want to do them, right? It's totally up to you.

You would think they would want an enzyme that would "turn on" the response so that it could target the bacteria of whatever the inactivated organism was. That way it would wipe out Lyme and co. That would be the response I would want!

@k07 how is LDI working for you? Does it seem to be helping at all? Also, are you seeing a dr in Alaska? Thanks!

Hi CMatt - welcome to our community!

Hopefully K07 will be on the forum to see this and respond to your questions.


Has your wife already been treating lyme disease?

I have been contemplating the LDI as well. My LLND has all her patients go on some antibiotics first to get the bacterial load down. I don't know if that is what most of the Dr.'s do, though.

When you have some time, you might want to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Good luck. I'm glad your wife has a supportive husband to help her through this.

So, K07 - you skyped with Dr. V.?

Did he have an explanation about the booster doses not working for you?

K07,

Thanks for posting and educating us. Sounds promising. I do not want to do abx. and like you feel I am not doing enough. I'm only on three herbs but feel they are really beneficial so don't want to stop them. I live in NYC so may look into this. Psychologically I don't like the idea of taking in dead bacteria when the entire point is to kill bacteria and get dead bacteria out of our bodies. It seems counter intuitive but intriguing.

Keep updating us on how you are feeling.