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 roof tops 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 two pages long. 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, homeopathy 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.
I will say my son responded nicely to Hansa Center and their detox, tinctures and homeopathies. I feel that they helped get his systems back on board, stabilized him and prepared his body in so many ways. Also took care of some 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 he would crash again.
The MOST DRAMATIC change I saw was when his lead practitioner Nurse Andreanna Rainville started him on LDI. Nurse Andi, who is a Klinghardt practitioner, now has her own practice in Kenmore, WA but also happened to be spending some of her time in one of the top PANDAS clinics in the US. She 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. 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 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 and crippling abdominal pain. 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 Nurse Andi recommended the Strep LDI thank goodness! With each “round” of 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, 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.
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 Nurse Andi and 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. I was mainly interested in involving Ty because he is known for getting patients to their core dose the fastest and safest. And boy am I glad we did this.
In the winter 2018, 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 now practically gone after 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.
As of this writing, it’s been almost 2 years since the first Strep LDI and several months 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, hiking for up to 2-3 hours sometimes, having sleepovers, laughing, going to malls and events with his friends and living like a typical teenager. He hasn’t caught a virus in months which is a big improvement. He’s loving, positive, more polite, independent (making his own breakfast smoothie and lunch), interested in learning and hobbies, plus talking about goals in life. He can easily go to sleep alone ever since the Strep LDI and that was a huge deal. He is not as impulsive and no longer complains of brain fog, rarely anxiety and can concentrate and think so much better. His temperament is worlds away from where he was.
I am still supporting his body and immune system with supplements and homeopathy. We use homeopathy constitutionally and for any acute issues that arise. I have been more than impressed with homeopathy. When he had mild anemia, we used homeopathy Phos Ferrum and some natural iron to resolve that. We also found out he 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. So that is now corrected 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. Many do not.
The way I look at all this is, we have a team: Our PCP, an LLND and homeopathic practitioner on board for overall and acute issues and immune system building. And we consider Ty Vincent as one of our main specialists - our LDI specialist. Ty is very open to doing conference skypes to include your practitioner. And since we had our initial group conference Skype, Nurse Andreanna Rainville who is our main practitioner, has become quite the master at LDI now. I would recommend either of them.
You take a drop under the tongue every 7 weeks. It’s quite inexpensive and simple. This helps regulate and retrain the T Reg cells to stop overreacting, stop causing inflammation, thus stop causing your symptoms and damage. Ty considers Lyme not as an infection but more how the patient’s immune system is reacting to the pathogens. And thus, LDI creates immune tolerance. As Dr. Dietrich Klinghardt has been saying for quite some time, around 90% of the Lyme symptoms are really from your immune systems reaction to the organisms and not the organism themselves.
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. Try to go to an experienced LDI practitioner that has been trained by Ty Vincent. Now that I have experience with Ty Vincent, I recommend him or Nurse Andreanna Rainville. They both skype and then mail the LDI’s. Some have found it helpful to go to a Vincent-trained practitioner that also muscle tests the priorities. But a highly experienced LDI practitioner is a must, as this treatment should not be done loosey-goosey. There are some nuances to it.
2. Some practitioners have found it important to get the LDAs (foods & inhalants) on board before adding in the LDIs which are for the pathogens. This is to down-regulate some things 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 by all means. 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”.
3. Be prepared for flares. Have low dose prednisone on hand. This is important as sometimes there can be a flare until you find your "core dose" - which is the goal. Most should not be afraid of the prednisone. The LLNDs even say it's safe in the low dose and short spurts is all that is usually needed to quell any flare inflammation; and did so within hours to a day for my son. If you let the flare go, you are creating more dangerous inflammation. Prednisone is the classic remedy for LDI that can help stop it in its tracks. If you flare, you then wait another 7 weeks where your doc will lower the LDI dose to find that core dose that only produces symptom relief. We also had excellent success with homeopathy for flares and have since just been using that. We have a great homeopathic practitioner also on board. She understands LDI because it’s similar to Isopathy (antigens). So she would prescribe NON-isopathic remedies to quell the flare symptoms. It worked every time. It’s important not to do Isopathy during LDI, but classical homeopathy seems fine.
4. I mentioned we are more in the Ty Vincent camp in how to do the protocol. The reason being is that he 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. Many LDI practitioners also recommend things to avoid around the 3 day critical window of dosing (day before, day of, day after) as some things could ‘possibly’ interfere with efficacy or cause a flare. A short list is: high vitamin C, NSAIDS, histamine support. We found especially to avoid immune stimulates. 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.
5. You can dampen down your pathogen load by having microbial support on board prior to LDI, but it’s not recommended 2 weeks leading up to the actual dose. For instance, you can do Black Seed Cumin Oil or Diflucan in between your doses, but not 2 weeks leading up to the dose/antigen that you are treating. You will 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.
6. Do not do the same LDI dose before 7 weeks or you will flare. But it’s okay to do a diluted LDI "booster" if needed and your doctor agrees during that time. I’m personally not a fan of the booster doses at this time, but I do like what Ty does for us by adding “volume” to some doses to help it last longer through the 7 weeks. Also it’s best not to go longer than 12 weeks between doses initially. But eventually you should be able to go longer and longer in between doses.
7. I recommend dialing in one antigen in at a time, otherwise it gets too confusing. Eventually when you have found multiple core doses, your doctor may want to start mixing the antigens together to be taken all at once.
8. The name-of-the-game is getting to your “core dose” which is measured by your symptom relief. So it is important to not layer in any new types of treatments during the first weeks of your LDI dose. You won’t know what improved your symptoms.
9. LDI is not for acute infections. Treat acute active infections as you normally would.
I will also say, we were impressed with my son’s response to FX Vital (broad spectrum herbal that addresses metals, yeast, viruses, Lyme & co's). Also knowing the art of detox with binders and drainage on board. We have used Pekana Drainage and rotation of ZeoBind, Takesumi Supreme but there are many more out there. And I feel it’s important to be aware of methylation challenges and how to address those. I am also very encouraged by Klinghardts new retrovirus protocol.
I would like to pass along a book and 2 presentations I find to be incredibly on point and helpful, which I referred to constantly. I have educated myself quite a bit throughout the journey, but find that Scott Forsgren and Amy Derksen break it down so well.
I highly recommend to read/watch these:
http://www.autismone.org/content/scott-forsgren-many-layers-recovering-lyme-and-chronic-illness (you'll see the pdf which you should print/save)
http://www.autismone.org/sites/default/files/Derksen_Amy_052716.pdf. The actual presentation she gave is here.
“New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies That Work” where many of them are praising LDI. Here’s Dr. Klinghardt’s chapter out of the book, which discusses his views on LDI that you can read for free: http://lymebook.com/dietrich-kinghardt-treatment-of-lyme-disease
I've wanted to post for quite a while, but I waited until we had longer term results and several of the LDI’s under the belt. And oh my gosh, it has been DRAMATIC improvement!! 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.