Blakeleysmom, I know I say this to you a lot, but you are such an amazing parent and person for your child to have on her side in all of this. You might feel helpless and exhausted sometimes, but what you are doing for her is absolutely huge. Many of us go through frightening and miserable periods like she is dealing with, but not all of us have someone fighting for us. Your posts bring tears to my eyes, knowing how much you care and how hard you are working to figure all of this out for her.
Pre-diagnosis, back when I suspected MS, my neurologist was very clear that MS usually begins with episodes lasting hours or days, and often affects one side of the body more than the other. She did not suspect MS based on my clinical evaluation, and an MRI ruled it out, so it's easy enough to look into if you are concerned.
I absolutely have had the sensations you describe, including heaviness, the need to lie down, and the feeling of being pulled downward. (Did not have the yeast or double vision, but yes to everything else.) I had these most acutely in the aftermath of a virus about a year ago. Various doctors told me I had viral myositis, a "post-viral syndrome," an Epstein-Barr virus reactivation, an adrenal crash, and Bartonella reactivation. Honestly I don't know who was right, but it got better. I worked on my immune system, adrenal system, and neurological health most concertedly. I made the biggest gains a few months later, however, when I started addressing MCAS, had an old root canal tooth removed, and started using the DNRS program.
If she has high titers for Epstein-Barr or other viruses, then I would recommend monolaurin or transfer factor specific to that virus (from Researched Nutritionals, which makes a lot of blends for specific tick-borne infections, too).
I have not done any antimicrobial treatment since about two years ago. I always have felt worse when using treatments (mostly herbs and rife, in my case) that directly kill pathogens. Others have the opposite experience. I know someone who keeps doxy around and pops one when she's having a bad day, and she's done this for 50 years! But for me, a supportive approach has worked best. My experience is most in line with that of Rawls in the sense that supporting my various body systems to keep pathogens in check has yielded the most benefit.
As for the centers, that's a topic that gets controversial on this forum pretty fast. I looked into them last year, including some calls with the centers and with past clients. I was not all that motivated to schlep my family there for weeks and pay huge amounts of money, especially when I could access Jernigan Formulas online along with some fairly comprehensive information about their approach. But some do see a benefit, and I don't blame anyone for trying. I like the thought of Hippocrates, but it's something I'd get more out of when I feel well enough to attend the lectures, classes, etc. I bought an AmpCoil, which also is very promising, but again, personally, I am too electrically-sensitive for my body to handle more than the most basic settings.
It took me years to decide that I wasn't going to do anything anymore than made me feel worse. I read Neil Nathan's Toxic and enough other LLMDs who believe that feeling worse is taxing to the body, delays healing, and should be avoided when possible. Some people revel in their brief herxes as signs that things are working, and I'm happy for them, but for the people who react poorly to everything, detoxify poorly, and herx for weeks or months, sometimes strongly enough to land in the ER? I do not regard that as productive.
I feel like I've said a lot here that many will disagree with, and that's fine - we all have different experiences and thus different theories and beliefs - but when I felt overloaded, it was because I was overloaded!
I'm so sorry that you are not being supported well by the LLMD. I wonder if there is anyone nearby with a more comprehensive approach. I have met herbalists, acupuncturists, Chinese medicine practitioners, and others who have a good grounding in principles of functional medicine (gut, neuro, nutrition, mitochondria, hormone systems, etc.) but without the MD credentials.
Saraeli would you mind sharing a little more about
your experience with DNRS? I’ve been curious about
it for a while.