Two weeks ago I had my first shot of Low-Dose Immunotherapy (LDI) for Lyme disease. When I posted the picture below on Instagram and Facebook, I got a huge response. Many people wanted to learn more and although I emailed many people with details, I figured I'd post about it, as well. LDI itself isn't new but the us of it for Lyme is. I am not an expert on the topic but I will share what I do know.
LDI for Lyme specifically was really developed by Dr. Ty Vincent in Alaska (http://www.mat-suim.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99801759.cfm). He's had over a 90% success rating in treating/improving Lyme patients. LDI is basically a way to desensitize the immune system to keep it from over-reacting. The idea is that our chronic symptoms (especially after years of treatment) are caused by our immune systems still reacting to the bugs even if they are gone or back in hiding. Our bodies basically just keep attacking ourselves so we still feel sick. LDI combines beta glucuronidase (an enzyme) with Lyme (and co-infection) antigens to help our immune systems build back tolerance. I think LDI is based off the idea that chronic Lyme would be treated as an autoimmune condition. I found this to be a really good article about LDI for Lyme: https://www.specialtynaturalmedicine.com/lyme-disease-ldi/. Dr. Schrader is also another well known doc for using LDA/LDI therapy but for all sorts of diseases and reactions. He is based here in Santa Fe and does some awesome work. He has recently added LDI for Lyme to his repertoire of what he treats.
The way I think of it is that LDI is like an allergy shot for Lyme- it helps boost and calm your immune system at the same time. The doses given are SUPER small so it's almost like a vaccine… your body learns to handle the Lyme in VERY TINY doses so it can build up the correct tolerance. LDI is extremely safe since the doses administered are SO SMALL! Unlike traditional allergy shots which can cause a severe reaction in a small amount of people who are extremely allergic. LDI is administered in one of two ways, either under the tongue or by a tiny shot under you skin (similar to a B12 shot). I am receiving the skin shots.
Dr. Vincent works with people all over the country and will ship you the treatment. The cost of LDI is so cheap compared to a majority of Lyme treatments and it is very promising. I will keep you all posted but so far I have not felt any positive effects from the LDI. You can only receive a shot every 7 weeks and it can take up to 6 months to find the correct dosage for you (thus taking 6-12 months to really benefit, although many people do benefit after the first few shots if you get the dosage right). I did herx after my first shot which was at a low dose so fingers crossed!
Miss Diagnoses says
The recipe looks amazing as always! I finally had cauliflower rice for the first time tonight. It was good.
Did you have to do anything specific to strengthen your immune system before starting that treatment? I'm definitely not there yet… I'm not even close to killing enough bugs to try something like this.
Lemons 'n Lyme says
This helps strengthen your immune system! You could totally do it now, I would ask your doc about it. The dose is so low you shouldn't have an adverse reaction (besides herxing) but you can start at SUPER low doses to possibly even prevent any herxing.
Christine says
Hi 🙂 I just received my first LDI treatment today, Dr. Vincent is my physician here in Alaska. I found you while looking for more information on the treatment. I found out today I have Lyme Disease.
Lemons 'n Lyme says
Please keep me posted how it goes! So glad you found out (but of course not that you have Lyme) and have such a wonderful doctor to work with!!! I
Christine says
I will, I have bookmarked you so I remember to check back. I'd like to see how it works for you as well. Thought I had Rheumatoid Arthritis but after more testing now I know it's Lyme, which sucks, but I'm happy to know and hopefully be able to do something about it. I'm excited to work with Dr. Vincent, he seems very passionate about his practice and the LDI treatment.
Rachel says
I am starting my Lyme LDI today from Ty. Nervous about a Herx because I am already so sick. I have never done abx but he says that is a good thing because my body is strong even if I feel like dying lol Please email me at mtrhowe85@ yahoo.com if any of you want to keep in touch while we try this!
Megan says
Hi, I hope you don't mind if I ask you a few questions about how your LDI treatment went? I'm suppose to start taking it in the next few days but I am so nervous. I am so sensitive and feel so horrible everyday that I am worried this treatment will be bad for me. I have adrenal failure so I'm on hydrocortisone and I guess that's a part of why I'm so nervous. They diluted my treatment to a 12 so very low. What was yours? Did you end up having a reaction? Hoping you're doing better! Thanks so much, Megan
Lemons 'n Lyme says
I don't mind at all! I have not noticed any differences yet. it can take up to 6 months to find your correct dose. My first dose was 8c and I did herx after. I just had my second dose last Sunday and it was 15c… I will be posting soon about this. 12c is very low so don't worry too much, just rest after and take care of yourself the following week (per usual 🙂 ). If you herx, you will notice it within the first few days just make sure you can rest and eat well. I'm so sorry about the adrenal fatigue, I deal with that as well. I would say try and get off the hydrocortisone as soon as you can since it really isn't good for your immune system! Let me know if you have more questions
Christine says
It's been a week+ and no noticeable difference. Was a very dilute dose to avoid a herx, so I may be getting another before the 7 weeks. Will update after my next dose.
Lemons 'n Lyme says
Thanks for the update! We are lowering my dose to be even more dilute since I herxed a little after. Doctor is hoping I feel slightly BETTEr instead of herxing after a dose. We shall see!
eileen says
Do you know what dose you were given? Also did you just have LDI for Lyme or also LDA allergy shot? My daughter had both and has improved dramatically.
Lemons 'n Lyme says
I think 7 or .7 or however they dose it. Something with a 7! 🙂 I just had LDI for Lyme and co's but not LDA
eileen says
I've started a group LDI for Lyme for people to share their experiences or find out more about this exciting new treatment.
eileen says
Dr. V is being very cautious now with starting doses - my youngest started with 13c (which is lower than 7 - the higher the no the lower the dose). After a week with no changes she has just taken her 12c dose. Don't know if it's coincidental but she had a better day yesterday 🙂
Lemons 'n Lyme says
Is this an in person group or something on the internet (like a FB group)? Would love to be a part of it if possible. Interesting you say Dr. V is cautious, my doctor told me he isn't and tries to give a high dose if possible. But maybe because it is your young child. I will be lowering my dose next round
eileen says
Yes it's a FB group LDI for Lyme I started - it would be great to have you on board it's a good place to share experiences of this promising new treatment. My daughters are in their 30s and all have Lyme :(:(:( All daughters have had Skype consultations with Dr V. He did originally start off using higher doses but found that some people had bad reactions so he's now doing much lower doses and if no effect a slightly higher dose after 10 days and so on until the right dose is found which can then be given every 2 months. If the effect wears off before the end of that period then you can also have a top-up dose. He's sending out his new recommendations to doctors using his LDI.
To join LDI for Lyme (it is a closed group) I think you will need to find me or the group and request on Facebook. I'm a technophobe so still learning the ropes! My name is EILEEN PEARSON or try requesting through LDI for LYME. Let me know if there is any problems.
Lisa says
Were you able to join the facebook group? I need to try this - did one for the food alone and it went badly and need to learn more. Please let me know how to join as I looked on facebook and couldn't find it to join. Thanks!
Lemons 'n Lyme says
Yes, I was. Search LDI for Lyme on Facebook and the group will come up.
Lisa says
great! thanks so much!
Tara Lafia says
Hello, I just found your site. Thank you for taking the time to post such helpful information and delicious recipes. I was wondering if you can update us about your LDI treatment. Thank you.