Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[minkeygirl]

I just got a call from Dr. Vincent's office. I almost passed out when I saw caller ID. I am on his cancelation list and my appointment is moved up a month!

 

[Daffodil]

maybe this was addressed before but what happens if you do LDI, dampen the immune response to the lyme antigens or whatever, then get re-infected? will you be able to mount an immune response to the new influx of pathogens?

 

[Sushi]

hat happens if you do LDI, dampen the immune response to the lyme antigens or whatever, then get re-infected? will you be able to mount an immune response to the new influx of pathogens?

That isn't how it works. It seems to restore normal immune function.

 

[minkeygirl]

@GutBuster How are you doing with LDI and mycoplasma? Did he want current labs to determine if you had an acute or chronic infection?

 

[minkeygirl]

I was hunting around and found this place. No clue whether they are good or not. I can't remember if anyone mentioned them. If they did let me know and I'll delete this.

http://www.ingelsfamilyhealth.com/low-dose-immunotherapy-ldi-changing-the-game-in-lyme-disease/

 

[Vitalic]

Herxing. I had to laugh to myself over that statement, barbc56..

Whenever I have done any alternative treatments (aren't they all alternative at this point?) when I felt better the doctor would say that meant the treatment was working...and when I felt worse the doctor would say I was herxing from the treatment, and that meant the treatment was working.

Based on that scientific logic, what I have also found, is that when I am doing absolutely nothing, I sometimes feel better, which must mean that doing nothing is working...and sometimes I feel worse, which must mean that I am herxing from doing nothing, and doing nothing is working.

Since over the long haul the results are exactly the same, I've long since opted for doing nothing, until someone actually figures out what it is we are "treating". It's way cheaper and less stressful.

This post is so true it hurts haha.

Mentioned LDI to KDM when I saw him yesterday and he said he was about to read a 150 page study on it, stupidly I did not ask which study but it sounded like it was in pre-publication, he seems interested.

 

[Sushi]

From The BetterHealthGuy:

I recently suggested that LDI was one of the most exciting new things I had encountered in 2015 in the treatment of Lyme, and I think it will continue to be a top new treatment in 2016 based on all of the patients and practitioners I have spoken to about it. Is it a home-run for everyone? No, nothing is. Can it cause major flares and Herxheimer reactions? Yes, absolutely. So, please don't think that LDI is a panacea, but it makes total sense to me, and I am very excited about it....I've talked to people who had a major or complete resolution of symptoms with LDI....The secret sauce of the LDI therapy is finding the right dilution of a given mix for each person. If the dilution is too high/too weak, nothing may happen. If the dilution is too low/too strong, a major flare can occur. If the dilution is the right one, magic may happen as the immune system learns how to better interact with the microbes in the body. - See more at: http://www.betterhealthguy.com/ldi#sthash.JDnqnWQw.dpuf -

 

[minkeygirl]

@Sushi We'll be cured!!!

 

[Lemnia]

Hi everyone. I started this thread a year ago. Topic meandered from the tracks at times, but seems it's back on course now. I started on LDI treatment in Sept 2015 after a lot of research. So far it's slow going as I am in the UK and my doctor, who is trained by Dr. Ty Vincent is in the States and treats me via Skype then sends the doses. I have not found my 'core' and vital dose, 'yet'. I have been taking Lyme LDI and yesterday just started on LDI EBV. I've had a few really good days and a few more devastatingly bad ones, but I'm sticking with it for now. Anyone who previously posted on here that indicated they were starting LDI ...can you please post your experience, doses and how treatment is going?

 

[geraldt52]

... I have not found my 'core' and vital dose, 'yet'... I've had a few really good days and a few more devastatingly bad ones, but I'm sticking with it for now...

And there's the problem. When my wife went through LDI she spent several years of constantly readjusting the dose, and never found her "core" or "vital" dose...at least not such that it would last more than maybe a month before it drifted off again. I suspect that is the fundamental flaw in LDI. In retrospect, I'm not even sure that the temporary improvements she would see in symptoms were anything more than just the waxing and waning of symptoms that is characteristic of CFS, and had little to do with the LDI "treatments". As I said before, in the end the LDI proved useless even for helping with her normal airborn allergies, for which LDI has very limited FDA approval (albeit with very low effectiveness).

I'm not being intentionally negative trying to bash LDI...I'm just relating our experience with LDI, which was a lot of wasted money, time, energy, and hopefulness.

 

[Sushi]

Holtorf Medical Group

How does LDI work?
LDI works by helping the immune system restore proper balance by reducing inflammation caused by foreign invaders (LDI) or allergens (LDA). LDI brings the immune system more in balance, helping it to fight pathogens more effectively...

 

[minkeygirl]

@Sushi where do viruses fit into this?

 

[Sushi]

where do viruses fit into this?

There is LDI for viruses too--most any one any of us might have. Quite a few are taking EBV.

 

[minkeygirl]

There is LDI for viruses too--most any one any of us might have. Quite a few are taking EBV.

EBV is one of the few things I think I'm negative for! But the rest? I'll probably need both hands to count! Thanks!

 

[foxy loxy]

My nurse practitioner had Lyme and she said this helped her and that she sees it help just about everyone. She want me to try it... I have been trying, and trying to find people who have done this and it seems like I can only scare up a few people who say it didn't work. I know this is a chronic fatigue forum and I have lyme and coinfections...plus mold mycotoxins... I wonder if what you have effects the outcome... I guess it is too new?

Anyone out there helped by this????

 

[Django]

Try joining the LDA/LDI group on Facebook - hundreds of people there who have tried it and can share about the outcomes and impact.

 

[Lemnia]

I am doing LDI now. As well as LDN. It's not a quick fix, however, I do believe many are seeing real improvements. The difficult part is being patient in trying to find your 'core' dose without flaring. Everyone is different, so it's a little bit of trial and error. If you take a dose and you 'flare', meaning you feel worse for a little while, then you must wait the full 7 weeks before taking another dose, so as you can see it takes time. The most helpful and informative site by far is 'LDI for Lyme" on Facebook. Good luck to you if you try it.

 

[foxy loxy]

Thanks a million people!!! This helps... I am pretty sure I am going to give it a whirl, because I have tried every antibiotic combo under this planet and still have neurological head problems...moving on to facebook...

 

[Sushi]

Anyone out there helped by this????

I am finding it very helpful and have had some very encouraging responses. However, as @Lemnia mentioned, it takes time to find the dose that you respond best to. I was lucky that I had some good responses with the very first dose even though it was not my "core dose." I will post more about it when I am further along with treatment.

 

[foxy loxy]

Thanks Sushi for chipping in... I looked in on the facebook group and it looks discouraging... the only encouraging thing I thought of was that Ty Vincett recently tweaked the protocol, and it supposedly works better now... less flaring more response etc. So this is very, very new for Lyme it seems.

Sushi, I will be WATCHING you!!! I dearly hope it WORKS for you!!! Blessings and a prayer sent your way!