LDI: Glad I didn’t quit

Okay. Raise your hands. How many of you doing Low Dose Immunotherapy have thought of giving up on it?

I know I did, and I think I’m far from being alone. LDI can be a fantastic treatment for Lyme Disease and other illnesses, but it can be very hard to get it to work.

Finding the core dose is key, and that can take a painfully long time to settle on. It took me more than a year of tries that often ended up with me feeling a lot worse than I wanted to feel.

For those unfamiliar with LDI, it’s a relatively new treatment most often used for Lyme and its co-infections, but it also can be applied to many other things. The idea is to get the body to stop overreacting to whatever the problem is and react in proper measure.

This is done by giving patients incredibly diluted substances (we’re talking one part per one hundred millionth and less). These dilutions are made from deadened pathogens and prepared in homeopathic fashion. The most commonly used one is the Lyme mix, which  consists of 74 species that include the Lyme bacteria (Borrelia), along with species of Bartonella, Babesia,  Ehrlichia and Coxiella.

I started nearly two and a half years ago with the Lyme mix at the 15C dose, which caused a moderate aggravation of symptoms. But I was told this was good news, as a reaction meant I was responding to treatment, and that eventually I’d find the right dose.

One of the difficult things about LDI is if you have a symptom aggravation, known as a flare, you have to wait seven weeks until you can take the next dose. The theory is that the immune system is not ready for another dose until this period is up.

What keeps you going during these long stretches is hearing stories of others who’ve had phenomenal results with LDI. And these are fairly common tales of people who had all but lost hope, and then suddenly started to get much, much better. Very good things can happen when an out of control immune system gets back in sync.

So I went down to 17C the next time. This time the results were mixed. Some things were better, some things worse. My doctor called it a mild flare.

Following that came 19C. It didn’t seem to do much, so we tried 18C. That was on the whole positive and I felt somewhat better, but we thought we could do better.

By this time, more than half a year had passed. I was starting to wonder if my efforts couldn’t be better spent focusing on other treatments. All in all, I felt my condition had modestly improved, but was it enough to bother continuing?

We decided to reduce the dose to 17C again. This is where LDI can get confusing. This time 17C worked better than it had the time before, and since I continued to feel a bit better it seemed this might be the core dose.

But why was 17C more effective this time? Maybe my body had become stronger and better able to handle a stronger dose. Maybe my microbial load had dropped.

And maybe it was one of a million other possible reasons. LDI uses a homeopathic dose, and in my experience with homeopathic dosing I’ve found it highly unpredictable. It is to medicine what the knuckleball is to baseball pitching. When you let it fly, you can never be sure what’s going to happen.

So next came 16C and that was too strong. Nothing dramatic but I felt like I was carrying a heavy backpack around the next 10 days.

At this point, I’d tried everything from 15 to 19C, and it looked like there was going to be no miracle for me. I fell into probably the same category as most people. For me, the LDI Lyme mix had become a helpful treatment that reduced my overreactivity and brought about improvement in my condition.

So after conferring with my doctor and looking back over my symptom journal many times,  I decided to make a conservative move and go back to 18C. That seemed to work well. I clearly felt better taking that dose than I would have if I hadn’t taken it. A 17C dose might have been slightly better or slightly worse. But looking over my journal it looked like the results from 18C were slightly better than 17C, so 18C it would be. The core dose was finally decided.

I also wanted to settle on a core dose for the Lyme mix, because I wanted a clear field to try the yeast mix, which was also said to bring about big gains for many people.

After taking a year to find the right number for the Lyme mix, I lucked out on the yeast. This time 10C was our first choice and I clearly felt a lot better on it. We decided that we’d found the core dose on try number one.

Like I said earlier, I’m glad I didn’t quit because while I haven’t experienced any jaw- dropping results, I have made steady progress on LDI. I’m considerably stronger than when I started and better able to handle whatever life throws at me. I’m also less likely to overreact to either pathogens or to allergens, so I have far fewer bad days than I used to and the bad days are a lot less bad.

I’ve come to believe LDI is a valuable treatment primarily because I agree with many Lyme doctors (Dr. Dietrich Klinghardt being one of the most notable) who in recent years have concluded that the biggest problem with this disease isn’t the bugs, it’s the body overreacting to the bugs.

If you can’t get your body to stop overreacting, then even if you kill some bugs and that gives you a spurt of energy, your body is likely going to fritter that energy away by overreacting to something. It’s like giving a compulsive gambler a whack of spending money. Pretty soon it’s all gone.

The other reason I like LDI is that there are very few other things that can reliably get my body to stop overreacting. So mark me down as a satisfied customer.

But like I said, LDI can be very unpredictable. Next week, I’m going to add in the antigen for Mycoplasma. I’ve tested positive for the nasty fermentans strain of this bug, and I’ve been hesitant to take it on. Still, after nearly two and a half years of doing this treatment, I feel confident that I’ll be able to handle this one. Wish me luck.

 

 

 

 

51 thoughts on “LDI: Glad I didn’t quit”

  1. I tried LDI years ago. Not successful. I’m about to do it again, how does LDI help when you have mast cell histamine along with POTS?. Does LDI also treat the co infections too? Just wondering how broad this treatment goes…. and if it works when you have other issues like I said above and mold….

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    1. Thanks for the comment. LDI can address all the issues you mention, but you would need to discuss it with an LDI practitioner who could find the right doses for you. It also treats coinfections. The LDI dose for Lyme and coinfections is used by a lot of people. I’ve taken it for several years and it’s been quite helpful for me. Hope that helps.

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    1. Hi Amanda. You may have already been very careful about increasing LDI dosage, but just a reminder that you have to be very careful with this, because if you ramp it up too fast it can give you a nasty herx reaction.

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      1. Thanks 🙂 oh I think I’m feeling it… 2 weeks of no sleep, when I drop fine before, I tried everything to sleep and nothing… 😦 this is my first dose…. my doctor is aware of my big reaction. It’s been 2 1/2 weeks. How long until these symptoms go away? Thank you

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      2. Hang in there. I don’t know enough about your situation to make a guess at when the symptoms go away, but I hope soon. If you decide to get another dose, make sure you tell your doctor to give you a very weak dose, and explain that you really don’t want to go through what you went through after the first dose.

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      3. Thank you! I appreciate that! I’m starting to get scared…. week 3 of no sleep and intense pain and anxiety, it feels like it’ll never go away…. funny thing is, I’ve done LDI before, a year ago for 8 months we eventually stopped because no dose was giving me any reactions…and now I’ve tried, xanex, Benadryl, thc nothing is touching the pain or putting me to sleep.. next is Advil pm …. I’m out of options 😦
        My doctor keeps saying hang in there lol I need to get back to work… I can’t take weeks off 😦 and I definitely will ask for a much weaker dose next time… what’s your complete overall experience? Find the Core dose? And feel amazing? …. it’s what I’m hoping for…. a long term remission for this and co infections…. 🤷‍♀️

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  2. My overall experience has been good. I started about five years ago and it took about a year to find the core dose. What it does for me is block my immune system from overreacting and thus stealing my energy. It hasn’t made me feel amazing, but it’s been an important part of enabling to slowly keep getting better.

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    1. That’s great to hear! I’m going to keep pushing through, Ive heard a lot(90%)have a good outcome of remission- I am doing other herbs as well, and basic multi vitamins. I’m working with a binder to tackle mold Illness… my personal 8 years of this Illness is I have the lyme under control, it’s the mold. And co infections and adrenals, anxiety that are my biggest conquer. But you’re giving me hope! And I appreciate all the positives to come, especially since I haven’t been bed ridden in 7 years until now… 🤦🏽‍♀️ So thank you for all your advice! Right now I am up to trying anything to diminish these symptoms to sleep again and return to work

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  3. Hello lymetips.
    Can you tell me what percentage of LDI actually improved your illness? For example, sixty percent? Thank you for your answer. I also emailed you but unfortunately you did not reply

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    1. HI Sadra. I didn’t receive the email you sent me for some reason. It’s hard to say what percentage LDI has been responsible for the improvement I’ve had. Maybe 25%.

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  4. Hello .Thanks for the answer. In fact, twenty-five percent impact means completely ineffective. So what made you continue this treatment for five years? If it improved your symptoms by twenty-five percent, was it worth spending five years?

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  5. In fact, I mean that there are far more effective treatments in the world today than twenty-five percent efficiency. Have you tried modern medical treatments?

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    1. It’s a rough estimate. When you’re dealing with Lyme disease, I’ve found that a lot of things don’t work. You keep what works. Also, it’s one of a number of treatments I do. It contributes well to the whole of my treatment.

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  6. Thanks again for your reply. I have a very strange disease. I am very sensitive to electromagnetic waves. That is, when I use the TV or cell phone or computer or even the refrigerator, bad effects such as depression. nausea . Feeling too hot if memory is weak. Decreased physical strength. It weakens my physical strength and brain fog and many other effects. Are your symptoms more severe than my symptoms? And do you think LDI can work for me? And if you like, tell me which of your symptoms have improved with LDI?
    I fully understand you because the disease of both of us is incomprehensible to ordinary people

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    1. I’m sorry to hear you are going through this. Electromagnetic hypersensitivity can be pretty awful I understand. This is not a symptom that has troubled me fortunately. My symptoms were very severe at one point, but at this point they are manageable, so I would say they are not as bad as yours. I don’t know if LDI could help you. It has helped me mainly by increasing my energy level, and helping my body to slowly get stronger. You might want to give LDI a try, but if you do make sure you tell the practitioner you want to start with a very weak dose. Starting at too high a dose can produce strong detoxing reactions that can cause serious setbacks.

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  7. I just have one more question for you. You did it five years ago before you started LDI treatment. Again, were your symptoms milder than mine? Or is your symptoms milder than I am now? Do I really mean that your symptoms are less severe now than they were before, and even earlier, or even five years ago when you did not start LDI, your symptoms were milder than mine?

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  8. My symptoms are less severe than when I started LDI. I have better energy and overall strength, and I also have fewer problems with joint pain. Joint pain used to be frequent, now it happens occasionally.

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  9. I also have chronic Lyme disease and I go to bed almost all day. I have very little energy and heavy sweating and pain in my joints and my life is disrupted.
    Will I return to normal life with LDI?

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    1. LDI could help you to return to normal. I was in the same position you are now in for several years. You can get back to a normal life. It will probably be a long process, though. If you don’t already have one, it helps greatly to have a good doctor who is experienced at treating chronic Lyme. I don’t know enough about your situation to make a lot of recommendations, but one of the big things sounds corny. You have to believe that you will get better. Picture that in your mind every day. If you try LDI, make sure you insist that your practitioner start you on a very weak dose. LDI can cause setbacks if you take too high a dose and that’s the last thing you want at this point. Take care and good luck.

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  10. I did not understand exactly what you meant.
    I mean, can I just go back to normal and get rid of my symptoms with LDI and no other treatment?

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    1. It’s unlikely that LDI alone would get you back to normal, but possible. It is better seen as a helpful add-on treatment along with other treatments a Lyme literate practitioner would have you on.

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  11. Hi .
    I have had Lyme disease for about a year and I want to gather information about its treatment.
    Would you like to tell me what other treatments do you use for your Lyme disease besides LDI? Has LDI been prescribed for you by a Lyme doctor?
    Among the treatments you use, is LDI the best and most effective method?

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    1. Hi Jean, I take many approaches. I would consider lDI an important and helpful treatment, and near the top of the list of the most effective treatments I do. Medically, along with LDI, other important things I do are low dose naltrexone, the herb Samento, transfer factor, B vitamin shots, magnesium shots, various other supplements and herbs. I’m a Christian and I also believe in the power of healing prayer, and I have received much of that to great benefit I believe. I also have done quite a bit of emotional/spiritual work aiming at dealing with childhood trauma and similar issues that many believe have a negative effect on the body’s ability to fight Lyme. I also eat a clean diet (no refined sugar, no gluten, lots of veggies and fruit) and get as much exercise and fresh air as I can. I think it’s very important to be persistent and develop a healthy lifestyle and stick to it in a disciplined way.

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  12. I’m very happy that you have improved so much. Are you living like you did before you got Lyme disease? That is, do you live like a normal person, completely normal and without any signs and symptoms of the disease? You gave me a lot of hope for a cure. Thank you. Now, after five years of using LDI, how often do you use LDI? I mean, how many times less doses of LDI are you receiving now.

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    1. Thanks for the kind words. I feel well on a day to day basis, about as well as I did before I got Lyme, but there are still neurological symptoms that keep me from living a fully normal life. I’d say I’m at about 80% of where I was before Lyme. I get an LDI dose every eight weeks. I haven’t reduced the number of doses… I’m glad I gave you hope. People do get better, and you can be one of those people. I know from experience that Lyme has a way of making a person feel like there’s no hope, but the truth is that there is hope.

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  13. Your description is very helpful and compassionate. Thank you. But I have just one more question. I promise not to ask you any more questions except this question and not to waste your time. Do you want to take an LDI dose every eight weeks or is it prescribed by your doctor? Because I have heard that after a few years of treatment with LDI, the frequency of doses decreases and even reaches once a year. Does that mean I should always use LDI every eight weeks and the number of times it does not decrease?

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    1. I take the LDI dose every eight weeks because that is what seems to works best for me, and this is what my doctor prescribes. It’s a very individual thing as I understand it. I’ve also seen where the frequency of doses is generally expected to decrease, but that’s not how it has worked for me. I find that I get clear benefit from the LDI dose in terms of reducing immune system over reactivity for the first 10 days or so, then the benefit gradually reduces until the next dose comes. Some practitioners use booster doses between regular doses but my doctor doesn’t do that because she feels it confuses the body. You and your practitioner should find out what dosing schedule works best for you, whether that be eight weeks or something else.

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      1. I’m sorry, but I still haven’t received your answer. Of course, you have been very kind to me so far, but in the end you forgot to answer my last questions. Does LDI improve your symptoms 100% in the first ten days of the dose and about 30 days left until the next dose? Will this percentage decrease dramatically? For example, if in the first ten days it is 100% useful for you, then until the next dose, for example, it will be 20% useful for you?

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  14. It was very strange. That is, your disease improves 100% in the first ten days of using LDI and reaches, for example, 20% by the next dose?

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    1. Man, you all are lucky…. I took mine 6 weeks ago and I’ve been bedridden sick ever since…. I can barley function at all…. it put my nervous system in shock and shut my body down…. I hate it!

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      1. Excuse me for interfering. Maybe the dose concentration you used in these six weeks was not right for you. Have you tried other concentrations?

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      2. Thank you for the reply 🙂
        No I have not tried any other concentration yet., I guess I don’t know what to ask for next, lower dose I suppose .. I’m a little too nervous to keep doing it..
        it’s funny I did LDI over a year ago, I did about 6 doses with no reaction, so we stopped… and now, I do one dose and I’m back to bedridden and insomnia like I was 7 years ago, when recently I was functioning and able to work .. 😬 oops…

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  15. Well, this is a happy place. Because it shows that LDI works for you. You just have to find your original dose. There are many for whom LDI does not work. They do not change anything. But you changed. Although negative. Now you just have to find the right dose. I wish you success

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  16. I’m sorry, but I still haven’t received your answer. Of course, you have been very kind to me so far, but in the end you forgot to answer my last questions. Does LDI improve your symptoms 100% in the first ten days of the dose and about 30 days left until the next dose? Will this percentage decrease dramatically? For example, if in the first ten days it is 100% useful for you, then until the next dose, for example, it will be 20% useful for you?

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  17. Hello . Are you still using LDI after a few years? Is it still useful for you to use LDI after this period? How satisfied are you with the LDI?
    Most importantly, did you find the right concentration? And do you always use the same concentration? Thanks

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    1. Thanks for the comment. I am still using LDI and it is still useful. It hasn’t been a gamechanger, but it’s been very helpful because it is one of the few things that can reliably reduce my immune system’s overreaction. I did find the right concentration for both the Lyme and coinfections mixture and the yeast mixture, and I try to tweak them very slightly with each new dose. This seems to make it work better.

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      1. Thanks a lot . I have a question as my last question. Does lyme cause other side effects to the body besides causing the immune system to become overactive?

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  18. The lyme bacteria is considered highly intelligent and it is probably doing things we don’t even know to help it survive. I’m not an expert about this, but from experience I would say it also screws up the nervous system and the endocrine system, and probably other systems as well.

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  19. Excellent so LDI has been able to cure your disease by at least 50%. I am right? If normally wonderful. Good luck dear friend

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  20. Hello again, I asked you this question a few days ago and you did not answer. Has ldi improved you by more than fifty percent?

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