A Recovery Story: Singing from the Rooftops
- Last Updated: 03 February 2017 03 February 2017
This is a GUEST BLOG shared with permission by Kelley K. Siliven. We need more stories of hope, and when I read this, I thought it was perfect.
Low Dose Antigen Therapy (LDA) 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 13 year old 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. He had symptoms two pages long, and then when he hit puberty, it got 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 trying 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 homeopathics. I feel that they helped get his systems back on board 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 is 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 the most dramatic change I've seen was when his lead practitioner – Nurse Andreanna Rainville - started him on LDA/LDI. Nurse Andi now has her own practice in Kenmore, WA but also happens to work part time in one of the top PANDAS clinics in the US. She had told us that they are "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 kids who get strep and it causes encephalitis (brain swelling). Very serious extreme neurological symptoms from strep bacteria. I mean he was so severe we were considering IVIG and almost put him on psych meds this summer. He is now happy, loving, positive, going to school, interested in learning, has an interest in real hobbies for the first time since elementary school. He can go to sleep alone finally now and that is a huge deal. He is not as impulsive and his tics are way down. His body and leg pain has also gone way down – which from what we understand is thanks to Pro/Kleb LDI. He can eat and tolerate so many more foods from the foods LDA. When we give him the yeast LDI, he gets in a better mood within hours and stays that way for weeks. These are pretty immediate and continues to get better with each 7 week dose. He even got strep this 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 extreme anxiety, anger, depression - as he had done in the last 1 1/2 years where he had strep 10 times and had these reactions!
Of course we are still treating the infections and supporting his body with some other supplementation, but now we are not having the over-the-top scary reactions like we did for over a year. As you can imagine, I am very much looking forward to when he is ready for the Lyme and co-infections LDI’s to continue his healing.
Overview: is you take a drop under the tongue every 7 weeks. It’s super inexpensive and simple. This helps regulate and train the TReg cells to stop over reacting. Here are two great explanations:
http://www.betterhealthguy.com/ldi - there are also links at the bottom to learn more.
http://www.betterhealthguy.com/vincent - and you have to check this out for sure.
Tips on embarking on LDA/LDI:
1. Try to go to an experienced LDA/LDI practitioner. (We preferred ones that were more in Ty Vincent camp vs. Shrader camp) and one that also muscle tests the priorities is even better. Or take the syringes to a good muscle tester/Autonomic Response Tester (ART). There is a certain progression on how to do this therapy.
2. The experienced practitioners have found it important to get the LDAs on board for a while before adding in the LDIs which are for the infections. This is to down regulate some things first before hitting the big guys. So we started on Foods, Inhalants then once we found his core dose added in Yeast, Proteus/Klebsiella. Then finally added in Strep. We are going to Lyme in a couple of months and am so excited!
3. Have prednisone on hand for any flares. This is important as sometimes there is a flare until you find your "core dose" which is the goal. Do not be afraid of the prednisone. The LLNDs even say it's safe in the low dose and short spurts needed to quell any flare inflammation and did so within hours to a day for my son and thus more was not needed for him. If you let the flare go, you are creating more dangerous inflammation. Prednisone stops it in it's tracks. Then next time your doc may lower the LDI/LDA dose to find that core dose.
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 crazy strict diet that came with the Shrader LDI protocol. Although, if someone is not responding to the treatment then maybe they should try the diet. Also, Ty has more experience with our kind of kids. Although there are for sure things you must avoid around the critical window of dosing that is laid out - especially immune stimulates and antihistamines or it will interfere with efficacy. Your doctor should give you a list.
5. Have microbial support on board prior to LDIs. For instance we would give my son Black Seed cumin Oil for a week or 2 before Proteus/Klebsiella and Strep. We have also done Diflucan a week prior to the Yeast one. This helps dampen down the flares. By the way, my son has only had a flare twice and once was because of miscommunication.
6. Do not do the same LDA/LDI before 7 weeks (will have a major flare) but okay to do a diluted "booster" if needed. Also don't go longer than 12 weeks between doses.
7. Join the FB group: Low Dose Immune Therapy for Autism, PANDAS, PANS & it's Co-Infections.
I will also say we are impressed with his response to FX Vital (broad spectrum herbal that even addresses metals, yeast, viruses, Lyme & co's that we started just 2 weeks ago). Also knowing the art of detox with Pekana Drainage and rotation of charcoal, ZeoBind, Takesumi Supreme, and AMD Footbath. And of course aware of his methylation challenges and how to address those.
I also wanted to pass along that I find these 2 presentations to be incredibly on point and helpful, which I refer to constantly. I have educated myself with tons of books but find that Scott Forsgren and Amy Derksen break it down so well. I highly recommend you all read/watch:
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.
And if you haven't noticed, the new book that's out: “New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies That Work” where many of them are praising LDA/LDI.
I've wanted to post for quite a while, but wanted to wait until we had 2 of the strep LDIs under the belt and several of the LDAs. And oh my gosh, It has been DRAMATIC improvement and I needed to post today! Remember that feeling when you were little and you woke up to Christmas morning? That's how my mornings have been lately! And also because I feel so much compassion for all of our children and parents…and 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 this and other boards.
Thank you LDA & LDI!!!
For those interested in supporting Charlie's Journey, visit this GoFundMe page.
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BetterHealthGuy.com is intended to share my personal experience in recovering from my own chronic illness. Information presented is based on my journey working with my doctors and other practitioners as well as things I have learned from conferences and other helpful resources. As always, any medical decisions should be made only with the guidance of your own personal medical authority. Everyone is unique and what may be right for me may not be right for others.