I did a search to check out previous discussions regarding LDI treatment for Lyme, but didn't see very many posts or much feedback from people who tried it and what they thought.
I went to my first LLMD appointment with Dr. H in OH. He seemed very knowledgeable and said he had treated patients for years with antibiotics, but more recently found that the best course of treatment was through LDI (Low Dose Immunotherapy). This was a totally unexpected suggestion and I do not know much about it.
Basically, he said the idea is that our bodies live with good and bad bacteria at all times, and it is not necessarily the bacteria that cause a problem but it is our body's immune response that is the issue. By doing LDI treatments, we sort of train our immune systems to stop the attacks and our symptoms then improve.
This is not something that you do in conjunction with extensive herbals or antibiotics. It is not covered by insurance, but the pricing is extremely reasonable. It requires a lot of commitment and appointments to find the right dosing to treat your specific situation.
I get the idea of this treatment and how it should, in theory, work (sort of the same idea as how a vaccine works, to my understanding). But I cannot comprehend the idea of not trying to kill the Lyme bacteria, and just trying to coexist with it peacefully..?
In a previous post, I saw someone mention that this sort of treatment would be great for reactions to things like household dust because that is not something that really does our bodies damage, but the Lyme bacteria can wreak havoc inside us, so how can it be OK to let them carry on?
It seems like LDI is a great concept, but I feel like it completely leaves out the whole "spirochetes destroying our bodies" issue.. Am I missing something, perhaps?
Does anyone have personal experience with undergoing LDI treatment, and if so, what did you think?
Posted by bcb1200 (Member # 25745) on :
Betterhealth guy just did a post on this a few months ago.
Wow, this is the first I have ever heard of this! Great info on that link, bcb. I would like to follow this thread to learn more.
I remembering hearing of a Lyme patient who improved dramatically with the help of a naturopath in FL a few years ago, who concocted a homeopathic remedy including the borellia germ after a year of antibiotics failed.
It would be helpful if you could keep us updated if you do decide to try this type of therapy. Thanks for posting.
Posted by WPinVA (Member # 33581) on :
How long have you had Lyme? How sick are you now?
If you have a new case or are very sick, then it seems to make sense to me to get the load down with antibiotics and then later move to this new therapy if you still need it.
Posted by Claridon (Member # 47443) on :
bcb- Thank you for sharing that article! It is optimistic to see more information showing that it could be a worth while treatment.
WPinVA- I was just diagnosed with Lyme in January, but I suspect I have had it for about 15 years. (At least that is when I remember being bitten specifically, and have had worsening symptoms since shortly after).
I did 60 days of oral antibiotics (Doxy) for something unrelated to the Lyme shortly before I suspected Lyme and got the diagnosis, but that didn't help. Switched to Minocycline for a few days after but ended up getting really sick since my immune system was down a bit. I didn't tolerate it well so I stopped using it after only a few days.
I have not done any "official" treatment specifically for Lyme yet, so I am kind of skeptical that LDI is going to be the answer, versus something that may help symptoms after exhausting other avenues of treatment.
The doctor I went to insists there is really no way to break down the biofilm where the bacteria hide, so using antibiotics to kill them is ineffective. Instead, if they are staying in their own little space in the biofilm, the LDI is the most effective form of treatment.. As in once we get our immune responses under control (through LDI), it's sort of a "they won't bother us if we don't bother them" approach.
Totally crazy? Maybe not?
Posted by foxy loxy (Member # 47053) on :
Claridon, I was just to see a nurse practitioner who recommended it to me...
I am searching for answers to this as well... sounds like you and I are different though as I have treated for four years with antibiotics without much success.
I think I would try antibiotics first as some respond fast with those, but my opinion only.
I, on the other hand, am running out of options. I am still wary of this treatment because it has only been out a year... and tweaked to be "better" in the last six months.
There is a facebook group of people that have tried it some and it looks discouraging. Sounds like it causes flares till you get the right dose, and some say it made them worse!!
I think I will keep it on the back burner of my brain and see how this turns out for people...
I hear a lot of people say that it is better to be in the hands of a good dr. who has done this and knows more what they are doing to they don't overshoot the first dose etc.
my thoughts are... so WHO knows what they are doing when it is so new???
Posted by Keebler (Member # 12673) on :
- I would not do just that. I actually sort of did for five straight years and it was a huge failure. The "get the body stronger, get the immune system working" approach failed me, at least with the method it turns out I was doing.
When first dx with 3 TBD, no LLMD in my state and no LL NDs at that time. However, I went to the top ND instructor at the National Naturopathic College in my city and he SAID he knew all about lyme, etc.
But he did not. I just did not know that for many years to come. Five years, every 3 weeks to the tune of thousands of dollars and lost time.
Custom formulated Herbal formulas were helpful but -- even though I always asked with each formula change every 3 weeks if there was something there specific to address lyme or babesia, etc. He always said "yes".
Turns out, nothing very specific other than one or two medium hitters in small amounts.
Later, when I got a computer and internet access I could research all that. But when I was dx in 1997 there was only one book out on the topic and not much else. Google was not even here until '98.
So I trusted the wrong person. It was my only choice but I sure wish I had known then he did not all about lyme at all.
He was brilliant in his own world but we were not at all directly addressing lyme, only helping my body get stronger really. Yet since the infections were not directly addressed, only the slightest of progress was seen.
Then I was blamed for not taking personal responsibility for allowing my body to heal. I was blamed for holding onto the idea if illness on some deep psych level. I had taken the very best care of myself with diet, etc. and still, told that I WANTED to be ill or I would have been well by then.
So, all the supportive measures sure did not work for me although I desperately wanted to get my life back.
Lyme flips the immune system in so many ways. It disables it, tosses all kinds of reactions around, etc. So if you do immune stuff, be absolutely certain that you are guided by a truly lyme literate and the most ILADS educated of the bunch.
It may be that someone who is truly lyme literate and ILADS educated about lyme might understand enough about this to offer immune help but still
lyme is not going to just lie back and say, oh, okay I'll let that work. Lyme is a might foe, the mightiest. I would never suggest to just do immune support unless also directly addressing the science of how lyme works in the body in some way.
There are many ways. You might investigate Rife &/or a LL ND.
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements -- those directly and indirectly of help. -
Posted by Keebler (Member # 12673) on :
Topic: low dose naltrexone -
Posted by foxy loxy (Member # 47053) on :
ummm Keebler, I think you are thinking of a different therapy.
LDN has been out for a pretty long time.
LDI is a new therapy, that involves shots and works on an entirely different basis... just clarifying, so people don't get mixed up... THANKS! Posted by Keebler (Member # 12673) on :
- Good point, foxy lady - yes, the LDI is newer, different. Thanks for pointing that out as it could be confusing and I probably did not clarify that.
. . . just posting various detail about immune support measures. For background.
And, with something so new, it's good to go back and see how the other immune methods fared and the differences then in any new approach.
the link that bcb1200 posted from the Better Health Guy on LDI is a good set for study.
Another side note on the topic:
MEDICAL MUSHROOMS, I think, do hold tremendous promise as immune support during a comprehensive treatment approach.
Claridon,
You say that you "have dealt with this for over a decade before getting a diagnosis . . . "
I don't know the doctor who suggests this and it may well be all okay and work.
You might talk to all those he has treated, if possible. Talk to ALL the lyme support groups within a large radius to you / the doctor. Read up on anything he's written, etc.
What do other ILADS educated LLMDs and LL ND think of this. The Better Health Guy's links set (bcb posted) are a start. Just be sure to go beyond those as well.
Oh, if you've not yet considered going gluten-free and diary-free, those steps would likely help whatever path you choose. Good luck to you. -
[ 03-11-2016, 04:27 PM: Message edited by: Keebler ]
Posted by Judie (Member # 38323) on :
I thought about doing LDA for MCS awhile back. When I did research, it said it can make symptoms worse if you have a high histamine level. I decided not to take the risk.
I know someone doing LDI right now. She did rife for years, but just couldn't seem to completely get rid of Lyme and company.
She's had some herx days and sometimes cycles through symptom really fast. She's not sure if it's helping or not, but it's doing something. She's been on it a month.
Posted by Judie (Member # 38323) on :
quote:Originally posted by Keebler:
...So I trusted the wrong person. It was my only choice but I sure wish I had known then he did not all about lyme at all.
He was brilliant in his own world but we were not at all directly addressing lyme, only helping my body get stronger really. Yet since the infections were not directly addressed, only the slightest of progress was seen.
Then I was blamed for not taking personal responsibility for allowing my body to heal. I was blamed for holding onto the idea if illness on some deep psych level. I had taken the very best care of myself with diet, etc. and still, told that I WANTED to be ill or I would have been well by then.
So, all the supportive measures sure did not work for me although I desperately wanted to get my life back...
-
Wow Keebler. That's awful. I went through something similar myself when there was no one else around to treat me. I wasted a lot of time and money.
I'm so sorry you went through that too. I really relate.
Blaming the patient when methods don't work is shameful.
Posted by beaches (Member # 38251) on :
Keebler, you got LDN and this other new therapy LDI/LDA mixed up.
You'd think they'd come up with a different name, but no. Why make things easier? Ha!
Anyway, I am intrigued by this newest tx and will be taking dd to a naturopath for this treatment. I hope it is the answer.
Posted by Jordana (Member # 45305) on :
Keebler, I have never heard your story and I am just incredibly pissed off for you.
I can't believe how outrageously stupid medicine has been about the most dangerous infection EVER.
Posted by foxy loxy (Member # 47053) on :
so I can't believe that this therapy SOUNDS so incredibly effective and there isn't anyone out there doing it or interested here???
From my research it sounds like they are getting more and more success for lyme without flaring.
This sounds really exciting as it can be used for other autoimmune conditions as well.
Listen to Ty Vincett on youtube and he makes it sound so exciting...
He claims he scared some lyme people off by overdosing, and causing flares, but if you find your "core" dose, it can be miraculous. Now, I might try it! Posted by Claridon (Member # 47443) on :
Apparently many people are finding this therapy to be a huge success, despite the risk of flares.
My LLMD did very clearly state that flares are sometimes part of finding the correct dosage for each individual, but that it was only temporary and the pay off would be worth it.
Still.. I can't wrap my mind around the idea of coexisting with the bacteria? To my (admittedly limited) understanding, LDI is only going to change your body's immune response to Lyme, essentially letting the bacteria continue to do their damage?
I think there is definitely potential with LDI, and since it's still relatively new there is a lot more to be learned from people who undergo this treatment.
Thanks foxy- I will have to check out his YouTube stuff. It sounds promising but I feel like I need a little more research before I really understand the whole thing.
Posted by Gabe (Member # 47670) on :
Thanks for posting about this topic. I have recently been sent this link:
from my local Lyme support ambassador, and she has been doing well on it. Because I've been so sensitive to meds and herbs, I am thinking this is probably the way to go for me. I'll probably need to do the candida protocol as well because the more I learn about candida and the micro biome in general, the more I realize if there's candida overgrowth, everything is gonna get worse... there seems to be some symbiotic dynamics happening in the gut with regard to candida and Lyme and co-infections so knocking out my whole micro biome with antibiotics does not sound like the place to start for me.
It's interesting what Ty was saying about MS and ALS and those kinds of diseases. I've had a borderline positive antibody test for MuSK Myasthenia Gravis, and I've been so sick and weak after only three days of mild antibiotics, plus myasthenia crises, I just worry a full on course of it could kill me and I heard some folks have died on their treatment.. this makes me think that it could have been because they were too sensitive for the toxicity of the die-off, or that they had so little natural defence in their gut flora or something.
I'm going to save the "big guns" for last and try this gentler method first. I might flare but as the Doc Ty said, you can't make a mistake by diluting too far down, so I'd request to start at the very weakest titration and then maybe build up from there. I feel so much better whenI avoid sugar.. I've noticed that even eating desert daily for a period of time can weaken me so I think there is something really going on with that. When I get the treatment I'm going to be very careful with my diet too!
I hope to start LDI within a few weeks. If anyone else does, let's stay in touch and share meets about how it's going! Please PM me if you have experiences or thoughts to share. I'll be happy to report back once I start and have an idea of how it's going.
Cheers, Gabe
Posted by foxy loxy (Member # 47053) on :
Claridon, I hear you on your immune fears... the only thing, that is comforting... they have been saying it doesn't weaken your immune system. It still fights bacteria etc. It just keeps it from OVER reacting... or so they say.
I get the feeling all this is a hunch, and really they don't know WHY it works... which could be a bit scary, however, "they" have always said that lyme itself doesn't hurt you... it is your bodies reaction to it that does... ???
So yeah, do we allow this to multiply happily in our system only to have it unleash one day?
Or is it that our immune system will continue to keep it in check, just not react to it? Or? as you see I don't know much either but this question does drive me bonkers.
Gabe, I do hope you will tell up about your experience! We need guinea pigs. I am glad you are willing to be one! I prayed4u!
Posted by Gabe (Member # 47670) on :
Thanks Foxy Loxy.. As I understand it, it is about gently training the immune system to handle pathogens and toxins, keep them in check and in proper ratio to the other bugs.
Like candida for example is a necessary part of our micro biome, but if it gets out of hand it can cause so many other problems.
Maybe it's possible Lyme is like that? And explains why some folks get the bite, even with the EM rash, and never get any symptoms?
Ultimately, I'd rather have my immune system make my inner environment "inhospitable" to pathogens such as lyme.
I've often had candida issues, fatigue etc and I ate a lot of processed and "convenience" foods as a kid, which has been linked to auto-immunity, so my guess is that my immune system has been knocked down somewhat and this is in part why I've gotten so sick.
I really like the thought of repairing and strengthening my own system rather than eradicating all the "good" bugs just to knock out the bad ones.
I hope to start treatment within a few weeks and will definitely keep you posted!
.............................................. (breaking up the post for easier reading for many here)
[ 04-07-2016, 10:27 PM: Message edited by: Robin123 ]
Posted by foxy loxy (Member # 47053) on :
The above link makes me feel better about the immune response to LDI...
It is pretty heavy and still a theory, but it could make sense...
Posted by Gabe (Member # 47670) on :
Thanks Foxy, I'll check it out!
Gabe
Posted by TX Lyme Mom (Member # 3162) on :
To find an LDI-trained doctor, check the AAEM website for their doctor referral list for your state and then check each name on that list to see if LDI is listed under that person's name.
Be aware however that not all doctors update their profiles regularly, so if you don't find anyone in your area, then call the AAEM office to find out whose name was on the attendance list for last year's LDI workshop.
The AAEM will be offering another LDI workshop featuring Dr. Ty Vincent again this next fall at their upcoming 2016 conference to be held in San Diego on Oct. 9.
IMO, LDI for Lyme is now (almost) ready for prime time, depending upon the experience level of each individual practitioner. The trickiest aspect of LDI is determining the "core dosage" for each individual patient. This process is described in detail on pg. 6-7 of the document about LDI by Sergio Ballesteros which Foxy Loxy provided above. Here that same link again for your convenience: http://www.betterhealthguy.com/images/stories/PDF/LDI%20for%20CFS%20and%20Lyme.17.10.2015.pdf
Another possibility for finding an experienced LDI practitioner would be to join the LDI FaceBook group which already has over 1700 members and inquire there about which practitioners are having good results.
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