Lyme and dysautonomia

Hello. Question for all of you experienced with Lyme and autonomic dysfunction. We’ve been treating my daughters Lyme and co-infections for some time. She improves then backslides as we bounce back and forth with co-infections. A lot of her symptoms seem to be related to severe autonomic dysfunction. I’m wondering at what point is this beyond the scope of an llmd. Our doc does seem very versed in the dysautonomia that occurs with chronic Lyme and feels symptom management while treating the infections is the best approach. However if you look to mainstream medicine docs for advice, they’ve all suggested we see dysautonomia specialists and pain clinics for help. At what point do we turn to those experts for extra care? Have any of you gone this route or so do you mostly treat the infections and support the body with supplements in hopes the dysautonomia improves with Lyme treatment? Don’t know if I should be going to a dysautonomia specialist or if that is all just a waste of time. Any thoughts would be appreciated!

Thank you for that reply. I’ve not heard of those injections or that protocol so I will look into them. I’m guessing your llmd was a klinghardt physician?

Ok thanks Girlie. I’ve always had the mindset that treating the infections was most important and hoped it would turn things around. I guess I’m getting to a point where as a parent, I don’t want to be naive either by not looking into what mainstream docs have to offer. From what I read though it doesn’t sound like there is much that can be done aside from piecing together treatments from different specialists for symptomatic relief.
I read recently about the journalist, Michelle Mulkins daughter having had a health condition that included so many different diagnoses. she was diagnosed with everything from Tourette’s and OCD to dysautonomia. I couldn’t help but think she had Lyme but I read enough to see where they sought help from a pain rehab clinic at Mayo and got her daughter more functional. She admits it’s still a journey and balancing act where they work with different specialists for care but overal she’s much improved. They never went down the Lyme road.
I’m just not sure how far Lyme treatment will bring my daughter. I’m exhausted and we’ve drained the bank over time as I’m sure most of you can relate. I need to be judicious with where I spend our resources.

Post Edited (Upatnite) : 3/30/2019 12:58:11 PM (GMT-6)

Thanks Saraeli for your response. All good info. I will likely see a dysautonomia specialist and try to incorporate their support in with Lyme treatment. I think I sometimes worry that the ANS dysfunction could be partly autoimmune, exacerbated by lots of herxing. We do use the burbur and different detox remedies but I just haven’t seen enough relief with all that lately. My daughter has had a ton of nausea lately as well which makes everything harder. Keeping food and meds down is a challenge

Thanks guys...interesting about the naproxen. Yes maybe it’s helping relieve inflammation and from that you get some symptom relieve.
Let us know how your appointment goes KentuckyOConnor. Good luck.

Hi, Upatnite,

Yes, I used the online version of the 14-hour DNRS program 2.5 weeks ago. My LLMD mentioned the program to me about six months ago as a way of addressing neurological issues, and like you I was skeptical, but about a month I go I saw DNRS recommended in Neil Nathan's book Toxic (which I found to be an impressive book), so I thought I'd give it a try. A previous LLMD had mentioned it to me as the next thing he tries for patients who treat Lyme for six months and either plateau or remain sick, but I found a new doctor instead of trying it, because back then I thought I should have been better after six months of treatment. :-/

The program's founder developed it for chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivities, but DNRS has been used successfully since for people with Lyme, POTS, PTSD, anxiety, and other issues. All these things are framed as limbic system impairment, a variety of brain injury. The 14-hour program includes several success story videos from DNRS users, and several YouTube videos about neuroplasticity that illustrate the science behind DNRS and other forms of brain injury treatment. The vibe of the seminars themselves felt hokey to me - very earnest and relentlessly positive, which I'm sure many find reassuring! I remained focused, though, and got a lot out of it. There are major thought pattern and attitude shifts involved, as well a set of subtle physical movements you do in the "steps" you practice each day for one hour.

Being my own thought police is exhausting, frankly, and the first few days I felt oddly depressed. Some visualizations are involved, and while normally I'm quite good at those, I developed trouble with vivid sensory imagery around day three, like my brain was rebelling! I also noticed an exacerbation of nervous system symptoms, which according to the DNRS forum can happen for people whose brains are peeved about being rewired. But of course that all makes sense - the brain will resist rewiring, and it's very hard work, just like for someone recovering from a stroke.

The improvement I have seen so far has been increased ability not to dwell on symptoms, increased awareness of unproductive thought patterns, and increased ability to redirect my thoughts. I also have slightly more physical energy, which for me is very noteworthy. I find this very encouraging because people often take longer than 2.5 weeks to see results, and because I have not devoted the full hour of practice per day that I'm supposed to. Because of POTS and general malaise, I have to do the steps in my imagination, generally, but that still seems to work.... I'm not the DNRS poster child for adherence to protocol.

I do think DNRS is very promising, especially when you think about how many functions and symptoms are related to the limbic system: immunity, digestion, sleep, mood, pain, energy, hormones, nerves, heart rate, breathing, sensory input, balance, etc. The limbic system is related to so many things, and if it is damaged by Lyme or some other trauma, then these things will not work well, even if an underlying infection is treated. Additionally, a healthy limbic system helps your immune system respond appropriately to pathogens, so you start being able to fight your infections yourself, potentially. I don't know many people personally who have tried it, but I definitely want to hear more from others who have!

Thanks for that explanation Saraeli. All very interesting. I think I’ll look further into it. Can’t hurt! What is the cost? So once you purchase the DVD you just practice on your own?

Ok thanks again Saraeli. Hope you find it helps. Keep us posted. I’ll update too if we end up giving it a try.