This is a GUEST BLOG shared with permission by Kelley Siliven. We need more stories of hope, and when I read this, I thought it was perfect.
Low Dose Immune Therapy (LDI) has been a God-send! It's finally time for me to post and sing from the rooftops to help others; as we have progressed through this amazing therapy.
My son is one the complicated cases, having congenital Lyme from me all his life and not being correctly diagnosed until he was 10. Thus, he suffered enormously with severe complications and had multiple symptoms more than three pages long typed! Then when he hit puberty, it became so much worse and also took him into autoimmune with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and CRPS (Chronic Regional Pain Syndrome) - both horrifying. We spent three years of trying multiple modalities of antibiotics, medical procedures, herbals, and traveled to some of the top LLMDs/LLNDs and medical specialists in the country. Not a whole lot of improvement and any improvement wouldn't last.
The MOST DRAMATIC change I saw was when his lead practitioner started him on LDI (Low Dose Immunotherapy). Our Klinghardt practitioner, who also happened to be spending some of her time in one of the top PANDAS clinics in the US at the time, had told me that they were "seeing miracles" in the clinic with the Strep LDI. And I tell you, she was right! I don't throw that word miracle around at all, but it is true to what I am seeing in my son - a true miracle! I have my son back!!!
As you may know, PANDAS is an autoimmune reaction for some kids who get strep and it causes encephalitis (brain swelling). It causes very serious extreme neurological symptoms from the strep bacteria and many times younger Lyme & Co’s patients are susceptible to acquiring PANDAS. My sweet and loving boy started having extreme rage, anxiety, depression, hatefulness, over-the-top negativity, tics and scary/dark intrusive thoughts. It was like he was possessed, truly. He fell slowly into the abyss, which worsened with each strep throat infection he had. He could not remotely handle school, had meltdowns, lost all his interest in hobbies, raged at friends and lost them, isolated himself from the world, could not sleep alone, nor be left alone even if I went to the mailbox. Before all this personality change, he was already in severe total body pain with the highest pain being in his feet/legs where he couldn’t walk or stand for longer than a few minutes and crippling abdominal pain along with some pretty bad neuro-cognitive symptoms. There were a myriad of other symptoms from Lyme & Co’s that were pages long, but the PANDAS’s took all of this to a new level with encephalitis.
By the summer of 2016, after a tonsillectomy and many rounds of antibiotics, he was so severe we were considering IVIG and almost put him on psych meds. Then our Klinghardt practitioner recommended the Strep LDI thank goodness! With each “round” of the Strep LDI he came back to me…the way he used to be! These were pretty immediate type of improvements with even the first dose, and continued to get better with each 7 week dose. He even caught strep that fall and didn't go cuckoo crazy! It took me over a week to realize he had strep because he didn't overreact with extreme neurological behaviors like over-the-top anxiety, anger, and depression - as he had done in the last 1 1/2 years where he had strep 10 times. The Strep LDI is hands down the most amazing therapy we have ever seen such life changing results from. And to boot, he has not had a strep throat infection since.
With the Foods LDI, he was able to consume gluten, dairy and any foods again. We also saw when we would dose the yeast LDI, he would get in a better mood within hours.
But we still had more work to do, as we had not embarked on those big bad boys of Borrelia & Bartonella yet. So I felt I should circle in the LDI expert to help lead us the rest of the way. That expert would be the pioneer of LDI: Dr. Ty Vincent. And boy am I glad we did this.
In late 2017, Ty had us layer in the Bartonella LDI. After a couple of rounds, we knew we had found his core dose when his constant overall body pain and neuropathy in his feet and legs went down to a 2 for the first time in years, which was a huge improvement. (We gage symptoms on a scale of 1-10 with 10 meaning you need to go to the hospital.) My son had most always been in the 5-9 range depending on activity. He could barely stand or walk for longer than 15 minutes without having so much pain that he had to sit down. Interesting note: Bartonella is suspected to be the culprit behind CRPS. The Bart LDI also helped with more neuro improvement. AND get this: his Bartonella striae that he had for years over many parts of his body faded; and are practically gone after just 3 rounds of the Bart LDI!
Then it was time to layer in the Borrelia LDI. This took his symptoms down the rest of the way! Especially his memory, pain and fatigue.
In the spring of 2018, we retested his CD57 levels and they went from 32-34 (testing over 3 years) to a 73 in few months after layering in the latest LDI’s. And his Nagalase went into range for the first time!
As of this updated writing in October 2019, it’s been almost 4 years since the first Strep LDI and almost 2 years since the Bartonella & Borrelia LDI’s and my son is doing awesome! He barely has any of those long-standing laundry list of symptoms. He is engaged in school, making excellent grades and was even nominated by his teachers for the prestigious National Beta Club last year which recognizes not only academics but also character, leadership and public service. This is pretty amazing considering he was deemed HFA (high functioning autism), ADHD, SPD (Sensory Processing Disorder), ODD (Oppositional Defiant Disorder) and was put under the Special Education umbrella by the school district for 5 years with 2 of those years being on homebound. He has no problem walking/hiking, having sleepovers. He is happy, laughing, going out with his friends and living like a typical teenager. His overall immune system has strengthened where he doesn’t catch everything going around like he used to, which is a big improvement. He’s loving, positive, polite, independent, interested in learning and hobbies, plus talking about goals in life. He goes to sleep alone on his own ever since the Strep LDI and that was a huge deal. He is not as impulsive and no longer complains of brain fog, anxiety and can concentrate and think so much better. His temperament & health is worlds away from where he was.
The way I look at all this is, we have a team: Our Lyme Literate Primary Care Practitioner and homeopathic practitioner on board for overall and acute issues and immune system building. And we consider Ty Vincent as our LDI specialist as that is all he does. Ty is very open to doing conference Zoom appointments to include your practitioner. More recommendations are in the Facebook LDI Group files.
LDI Overview
LDI is called for when someone is chronically ill despite trying most everything. It’s not for acute or new infections. If someone has done the appropriate killing therapies and detox and are still not getting better without them, that’s when LDI is called for. LDI is for when the body goes into autoimmune with certain pathogens and the patient is having chronic long standing symptoms. Persistent Lyme, PANS, PANDAS, Food allergies, Inhalant allergies are a few examples that are in this chronic autoimmune category. It is being used for Autism too!
LDI is sort of a blending of homeopathy and Immunotherapy (as you see in allergy neutralization “shots”). But it’s not performed like either one. A “core” C dose for the antigen that is affecting you needs to be found and then that specific core C dose is taken sublingual every 7 weeks to retrain the Treg cells of the immune system from incorrectly overreacting to that specific pathogen/antigen, all the while building the immune system back. In chronic illness it’s the dysregulated and confused immune system that is actually causing the symptoms and inflammation - attacking itself at even the tiniest amount of certain pathogens. Thus it’s considered autoimmune.
Once you find your core dose, you take the LDI drop under the tongue every 7 weeks. It’s quite inexpensive and simple. Again, this helps regulate and retrain those T Reg cells to stop overreacting, stop causing inflammation, thus stop causing your symptoms and damage. Ty considers chronic persistent Lyme & Co’s not as an infection but more how the patient’s immune system is reacting to the pathogens. And thus, LDI creates immune tolerance.
LDI has become the umbrella term for both LDI & LDA, but some people still use the individual terms. LDI = Low Dose Immunotherapy which is for anything inside the body (pathogens). LDA = Low Dose Allergy which is for anything outside of the body (pollen, chemicals, foods). I use LDI as the umbrella term for both.
Here are 3 great explanations of LDI:
- http://www.betterhealthguy.com/vincent- Here is a mom of a PANDAS child interviewing Ty Vincent.
- http://www.betterhealthguy.com/ldi- Quick explanation of LDI. There are also links at the bottom to delve even deeper.
- https://www.betterhealthguy.com/episode27- If you watch anything, here’s a fantastic interview with Ty where he explains it so well.
Ty has created several LDI’s. Everything from Epstein Barr, Varicella (PHN/shingles) to chemicals, parasites, inhalants, foods, Lyme, Strep, collagen and many more.
My Tips on Embarking on LDI
1. Go to an experienced LDI practitioner that has been trained by Ty Vincent and also actually follows his titration Practitioner Manual. A highly experienced LDI practitioner is a must, as this treatment should not be done loosey-goosey or on-the-side since there are some nuances to it. Some practitioners do LDI wrong so I suggest all to join the LDI FB Groups noted below where in the files of those groups there are “recommended” LDI practitioner listings.
2. The name-of-the-game of LDI is getting to your unique “core dose” which is measured by your symptom relief. (This is indicated by the “C” strength of the dose.) So it is important to not layer in any new types of treatments during the first weeks of your LDI dose as you won’t know what improved your symptoms.
3. Some practitioners have found it helpful to get the LDAs (foods & inhalants) on board (if those are problematic issues you are having) before adding in the LDIs which are for the pathogens. It’s for the reason that everyone has to eat and breathe right? This is to down-regulate the constant daily inflammatory triggers first before hitting the big guys. For instance, we started on Foods and Inhalants, then once we found his core dose added in others. But if your child has PANDAS, jump in on the Strep LDI first by all means since encephalitis trumps all. One of the interesting things with the Strep LDI is that it has a narrow range that works for most all patients, so it’s easier to get to that “core dose”.
4. Be prepared IN ADVANCE for potential flares. Sometimes there can be a flare during titration to find your unique "core dose". Low Dose Prednisone is the classic LDI flare remedy but there are more flare protocols in the FB LDI Group Files including homeopathy. Even many of the LLNDs I have spoken to feel low dose prednisone is fine since it’s such a low dose and a short spurt is all that is usually needed to quell any flare inflammation; and did so within hours to a day for my son. But if you end up doing aggressive treatment with low dose prednisone, you will have to titrate back down on it and follow your doctor’s instructions. It’s important to know that if you let the LDI flare go untreated, as with any flares, you are creating more dangerous inflammation so you need to jump on the flare within around 3-4 days after the dose. Keep in mind that if you do flare from that particular LDI antigen that means you actually need that antigen (as you would have no response if you didn’t) but it was too strong and then you would have to wait another 7 weeks where your doc will give you a more dilute LDI dose to titrate on in finding that core dose that produces symptom relief. As mentioned, we also had excellent success with classic acute homeopathic remedies for the handful of LDI flares he experienced, and since that is all we use for potential flares under the care of our homeopath. Our Homeopath Lizzie Martinez understands LDI because it’s similar to a branch of homoeopathy called Isopathy (which is antigens). So she would prescribe classical acute remedies, that were NON-isopathic remedies, to quell the flare symptoms. It worked every time for us. It’s important not to do Isopathy during LDI, but classical homeopathy has been totally fine for us and many other patients I speak to.
5. I mentioned we are more in the Ty Vincent camp vs. the Dr. Shrader camp. The reason being is that Ty has found little need for the extremely strict diet that came with the Shrader protocol. Although, if someone is not responding to the treatment then maybe they should try the diet. Some LDI practitioners also recommend to avoid certain supplements/medications around the 3 day critical window of dosing (day before, day of, day after) as some things could ‘possibly’ interfere with efficacy, cause a flare or make it hard to see if there was a response. A short list is: high vitamin C, NSAIDs, histamine support. This is not a hard-fast rule though and with extreme cases that require support it may be fine to do along LDI. We found especially to avoid immune-stimulants. Some herbs are considered immune-stimulants and we found out the hard way that Elderberry made us flare on every LDI over a month. So my personal thought is best to just stay away from immune stimulants when doing LDI treatment all together. Mainly because LDI is trying to calm down an over-active immune system, while immune stimulants will ramp it up. Some herbal immune stimulants include: Elderberry, Olive Leaf Extract, Astragalus, Echinacea, Cat’s Claw & Goldenseal. I personally stay away from all nonessential meds/supplements during the 3 day critical window.
6. You can dampen down your pathogen load by having microbial support on board prior to LDI, but it’s not recommended during the 2 weeks leading up to the actual dose. For instance, you can do Black Seed Cumin Oil or Diflucan (if doing the Yeast LDI) in between your doses, but not 2 weeks leading up to the dose/antigen that you are treating. You would be changing the pathogen load in your body too close to the LDI and it will make finding a consistent core LDI dose more difficult, because you are changing the pathogen load.
7. Do not do the same CORE LDI dose before 7 weeks or you will flare. If you are still titrating to find a core dose, you will continue to move forward around every 10 days or so to find that core dose, but here I am talking about if you’ve found your CORE dose or flared on a dose. But if a patients LDI core dose is wearing off before the 7 weeks, practitioners can give a diluted LDI "booster" if needed. I’m personally did not like the booster doses, but I do like what Ty does for us by adding “volume” to some doses to help them last longer through the 7 weeks. Also important to note here that its best not to go longer than 12 weeks between doses initially because this can actually change your core dose going forward as the body is constantly changing. So stay on schedule and be organized. But eventually and systematically you should be able to stretch longer and longer in between doses as this is the case for my son now.
8. I recommend dialing in one antigen in at a time, otherwise it gets too confusing. I personally also feel this way about the Lyme “MIX”, as I think that the Borrelia, Bartonella, Babesia LDI’s should be separated out and not in a mix. I feel if one of those pathogens are dormant at the time of dosing then it could possibly bring it out of dormancy. Plus, I just can’t wrap my arms around how all those pathogens could all possibly be responsive to the same unique core dose. My son’s Bartonella core C dose is different than his Borrelia core C dose. There will be LDI Practitioners that might very well disagree with my opinion of the Lyme Mix, but it is what I hypothesize based on some patient’s (not all) feedback and to some extent my own experience. I am told there are patients that do indeed respond to the Lyme Mix just fine, but I like to err on the side of caution. Regardless, eventually when you have found multiple CORE doses, your doctor may want to start mixing the antigens together to be taken all at once, which is totally fine and what we have done with my son at this point.
9. LDI is not for acute infections. Treat acute active infections as you normally would.
10. Educate yourself fully on LDI and don’t leave it all up to the LDI practitioner. LDI therapy is a partnership between the patient, parent and practitioner all the way. I am providing many resources below to help in this aspect and more tips are in the below noted LDI Facebook Group files.
Bottom line is there no treatment that is near as good as the immune system, period. But when the immune system gets dysregulated by some of the more virulent, stealth, cunning & clever pathogens (Borrelia, Bartonella, Babesia, Mold, Strep), it can dysregulate and confuse the immune system, hide and even change its form evading treatments like antibiotics. Then a host of many other problems ensue (food allergies, SIBO, H. pylori, parasites, etc.) because the immune system is not doing its job anymore.
Dr Deitrich Klinghardt has been saying for quite some time that around 90% of Chronic Lyme & Co symptoms are really from your immune systems overreaction of the pathogens and not the organisms themselves. Dr Ty Vincent concurs, as does Dr Rawls, Dr Karima Hirani, Dr Charles Crist, the Lymedisease.org site and many more. This is why you’ll see people relapsing after going off long antibiotics & herbal regiments. You can’t kill it all and it’s actually part of the bodies microbiome at this point and it’s the immune system overreacting causing the inflammation and symptoms – not the pathogens.
Low Dose Immunotherapy (LDI) is a therapy that GETS TO THE ROOT of the immune dysregulation problem by retraining the Treg cells to stop overreacting and causing the body inflammation and symptoms.
Beyond LDI
I am still supporting my son’s body and immune system with homeopathy through our wonderful Homeopath Lizzie Martinez. We use homeopathy constitutionally and for any acute issues that arise. I have been more than impressed with homeopathy. When he had mild anemia that the infections set in motion, we used homeopathy Phos Ferrum along with Ancestral Grass Fed Desiccated Beef Spleen or Liver supplements to resolve that. When he broke his ankle we used Sympytum remedy to knit the bone matrix with great success. And any time he does gets a typical illness on the rare occasion, our homoeopath will match his symptoms with acute remedies that knock it down right away within days. My son used to get simple viruses and be down for several weeks prior to this.
We also found out my son had low HCL in his stomach - which is not good because HCL sterilizes the stomach of pathogens and helps you “absorb” your vitamins and minerals including iron. Low HCL is a common problem with those with chronic illness. So that was easily corrected with the Betaine HCL with Pepsin protocol and we haven’t seen the mysterious constant high abdominal pain since. He did Vision Therapy (VT) for a year, which corrected the many deficits (like double vision and convergence insufficiency) and damage that Lyme & Co’s had set in motion. VT retrains the neuro-connections between the brain and eyes, and is all too common in children with Lyme. It has helped incredibly with school and reading. You would see a specialized Optometrist who also does Vision Therapy in their practice, as many do not.
I will say, prior to LDI, my son had some positive response to Hansa Center (renamed Biologix Center for Optimum Health) which is an outpatient clinic where you are treated over 2 weeks in Wichita, KS. I feel that Dr. Aric Cox there helped get his systems back on board, stabilized him and prepared his body in so many ways especially via their state-of-the art detox protocols, homeopathies & tinctures. Dr. Cox also took care of a couple of things that I have not ever seen again in him; the nice thing about homeopathy is it can be curative for many things. I always saw improvement after each visit at Hansa and their muscle testing revealed more priorities, diagnostics, roadblocks and helped us to navigate around Herxheimer's and other reactions, as well as, pointed us to the right supplements. But eventually my son would crash again so it was not the full answer for us. Update: Many of the doctors from Hansa Center/Biologix, including Dr. Aric Cox, have left as a team and opened up their own clinic called Institute for Restorative Health. They offer a very similar model of care as Hansa and I would recommend Institute for Restorative Health at this time if you are needing to get above water.
There are many exciting therapies available these days like LDI that includes Homeopathy, Low Dose Naltrexone & Ultra Low Dose Naltrexone (LDN & ULDN) and DNRS that are non-killing protocols to work with the body in handling many chronic health issues especially if they have gone chronic/auto-immune. They are all very different in mechanism of action but all are working on some level in assisting the immune system &/or nervous system.
There are some very effective “killing” therapies, beyond antibiotics, to explore these days as well, if there is an active infection or the load needs to be taken down: like Herbals (Buhner, Beyond Balance, Cowden, Byron White, Zhang, Rawls, Klinghardt), as well as, 10-pass ozone and possibly Disulfiram. When doing killing protocols it is best to be under the care of an ILADS trained Lyme Literate practitioner called LLMD’s/LLND’s and it is VITAL there is proper detox and drainage in place to deal with herxheimer reactions. We have used Pekana Drainage and rotation of ZeoBind & Takesumi Supreme for detox but there are so many more out there to explore.
It also needs to be uncovered if the patient is dealing with Mold &/or Heavy Metals and take a look at any methylation challenges. Mold or Metals could be at play in chronic cases that are not responding to any therapy and highly trained practitioners feel those are priority #1 to address. But keep in mind that if a patient is still having symptoms after clearing Mold in the body and living environment…there are LDI’s for that too! The Mold LDI, Environmental LDI, or even sometimes the Yeast LDI. I’ve found for Heavy Metals that the PushCatch protocol by Quick Silver Scientific to be quite effective. Look on YouTube for the Tony Robbins testimony on that.
I am a huge fan of Klinghardt’s Autonomic Response Testing (ART). ART is an excellent diagnostic tool using biofeedback (think muscle testing on a much higher level) and can be helpful for guiding supplements, as well. But unfortunately I don’t feel it’s as helpful in guiding LDI as much. As most realize, the lab testing for Lyme, parasites, PANDAS are poor and this is where ART can be so helpful. So if you are interested in getting down to finding out what is going on in the body and need answers, I highly recommend finding a high-level ART practitioner. See below resources for more on ART.
As mentioned in the beginning, LDI has given us DRAMATIC resolve. Remember that feeling when you were little and you woke up to Christmas morning? That's how my mornings are now…and a far cry of how I woke up during those dark years.
I feel so much compassion for all of our children and parents. I kept envisioning someday I could write something like this to help not just my son but other children with Lyme/PANS/PANDAS suffering, that I’ve seen day in and day out for years on the boards. And here I am! Thank you to cutting edge practitioners, persistence, hope, and of course to LDI.
Resources
Here are 2 LDI “Closed” Facebook Groups to join where there are even more very important documents, tips, practitioner recommendations in embarking on LDI that I’ve added to the group files to read/print:
Here’s a 50 minute PODCAST I was invited to be a part of for May Lyme Disease Awareness month in 2019 that is more of a big picture look of Lyme & Cos, Congenital Lyme, PANDAS, PANS, etc. It especially goes over what is going on with our children and reiterates my son’s story and recovery.
Links to my son’s recovery team:
- GlobalImmunotherapy.com - Dr. Ty Vincent is the pioneer of LDI and can work with patients remotely and trains physicians on LDI around the globe. He only does LDI and does not offer other supports. Head over to his “ABOUT LDI” section to watch all his short YouTube video’s in order.
- LizzieMartinez,com - Our stellar homeopath who can work remotely. She understands LDI and can work alongside it. I actually feel homeopathy could be a first line to explore prior to LDI in some people.
- InstituteForRestorativeHealth.com - Dr. Aric Cox formerly of the Hansa Center has opened this new clinic and helped my son get above water with state of the art detox & homeopathy.
LymeDisease.org – A credible website that has up-to-date “accurate” information, that has a great 5 minute video explaining how it’s the immune system causing the symptoms, not the Lyme bacteria. The up-to-date LLMDs & LLNDs like Dr. Klinghardt, Dr. Vincent, Dr. Rawls and many more have been saying this for years.
LymeDiseaseChallenge.org – Another favorite credible website! It’s also very easy to navigate.
ChildrensLymeNetwork.org - Description of PANDAS/PANS which is autoimmune encephalitis.
BetterHealthGuy.com – Make sure to head over to Better Health Guy’s Podcast section. Scott Forsgren has interviewed the top experts – including Dr. Ty Vincent which is a must watch interview.
The book New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies That Work is top-notch where many of them are praising LDI as an adjunct.
- Klinghardt’s partial excerpt out of the book, which discusses his views on LDI that you can read now
- Wayne Anderson’s partial excerpt out of the book that is most excellent to help discern the different main pathogens based on symptoms
UnderOurSkin.com - The award-winning documentary Under Our Skin & its sequel Emergence are eye-opening to all the complexities and facets of this disease and follow’s patients journeys. It even touches on the corruption of why and how this devastating illness is not being properly addressed with the CDC & IDSA and how Lyme & Co’s could very well be a government mistake they are not admitting.
If you are interested in deeper exploration of the weaponizing of Lyme Disease then you will want to read or get on audible Bitten: the Secret History of Lyme Disease and Biological Weapons by Kris Newby who was a part of Under Our Skin. Better Health Guy interviews Kris here.
Here are two presentations I found to be incredibly on-point and helpful, which I referred to constantly back in the day. I have educated myself quite a bit throughout the journey, and find that Scott Forsgren and Amy Derksen break it down so well.
How to check and treat low HCL.
Lyme & Co’s Testing
Tick testing
- If you have pulled off a tick you can send it for testing to: ticknology.com or tickreport.com (Keep in mind that Lyme & Co’s is a vector-borne diseases that can be transmitted not only by ticks, but also mosquitos, biting flies, fleas, etc.)
Human Testing
- A listing of the all available Lyme tests for humans with the editor picks are at: https://www.betterhealthguy.com/lyme/testing
- In my personal opinion, the DNA Connexions Lyme Panel is the most sensitive test as of this writing and I like it alongside clinical diagnosis and ART. My son did not show up on any of the blood tests and it might be because of two reasons - where some people do not mount the antibody response required for detection in blood tests or that Lyme & Co’s are rarely swimming in the blood, but instead deep in the tissues and organs. He finally showed up through ART, then clinically dx by a LLMD and then we did DNA Connexions with a positive result. This is after many failed blood tests including the IGeneX gold standard. DNA Connexions is a urine test you can order without a physician but unfortunately is not covered by insurance at this time. Note: For DNA Connexions, you must collect the urine sample later in the day and also after one hour of high activity or massage to release pathogens from the tissues for detection.
- Clinical Diagnosis by an ILADS trained practitioner called LLMD’s or LLND’s. Doctors can receive AMA approved CME hours FREE for Lyme disease at ILADS.org.
- Klinghardt’s Autonomic Response Testing (ART). Call or email the Klinghardt Academy to ask for an ART trained practitioner near you.
Here are two links where ART is explained well by Dr. Mercola:
