Chronic Rants

Hello friends, it’s been a while. I have thought about writing so many times but sometimes I was too fatigued, other times I was too busy, and then there were the times I wasn’t sure what to write about. Today, though, I want to ask if you’ve tried either of the new treatments I’m considering.

One of the many difficult aspects of living with a chronic illness is that we need to make difficult, complicated, often expensive decisions about our health. I am facing several of those decisions right now, and I’m at a loss. Something needs to change because the extra fatigue I have had over the past year and a half is having a very negative impact on my life. I would also like to understand why I suddenly gained 20 pounds, my blood pressure went way up (from 90/60 up to the “normal” range), and I developed a lot of acne, all within a year. I’d also like to know why none of my medical practitioners think this deserves attention!

Meanwhile, one of my practitioners suggested NAD treatment. This is a mitochondrial treatment that is used by her practice to help with fatigue and other symptoms. Other people use the treatment to help with anti-aging. Personally, I don’t know that I’d want to mess with my body for the purposes of defying aging, but I’d be very happy to try something that might help with my fatigue. Still, I have only found one person who has tried a version of this, and they weren’t do the version my practitioner recommends. While they did NMN, my doctor is recommending direct NAD+ if taking orally, or else direct NAD if taking through an IV. An IV is cheaper (none of this is covered by insurance) and I wouldn’t have to worry about gluten but it involves travelling, staying for at least 2 nights with a friend (the night before the IV and the night after), finding a dog sitter, and enduring a 6-8 hour IV. The oral version will cost more, I have to find a gluten-free and corn-free version, and I don’t always process meds well so there’s no way to know if it will even work. Then again, the IV might not work either.

I’d love to hear from people who have tried this, what they hoped to gain from it, and if it worked for them. I’m going to have another appointment with my practitioner soon and I’ll probably try the oral NAD+ if I don’t learn anything new before then. At least I could try it from home, and if it does work or I react badly then I can stop. If it works, then I could switch and do the IV later, when I can plan a visit out that way.

Typically I would say, “there’s no harm in trying” but this time, I’m hesitant. I suppose it’s because this is such a new treatment, most doctors haven’t even heard of it, and I don’t know anyone who has tried it. Still, something has to change. And what if it helps?

The next thing I’m researching is pain reprocessing therapy. A friend had a lot of success with this and I absolutely want to try it. I’m just stuck on how.

Pain changes our brain. I already knew this, and it’s key to this treatment. Some pain we feel is due to structural issues that cause pain. Other pain is due to our brain’s rewiring. PRT trains the brain to tell the difference, and it can greatly reduce pain. According to a friend who is trained in this treatment, some of my pain should be treatable with this method, though not all of it.

So there’s no problem, right? Well the problem is that I don’t know who to see for treatment. While I could theoretically find a practitioner who takes Medicare insurance, it feels like searching for a needle in a haystack. If I can’t find that person, and it could easily cost several thousand dollars. Plus, I want to find someone who’s good! My friend who is trained in this method can’t treat me because it would be unethical. She did give me the websites with lists of practitioners, but it’s going to take a long time to call/email all of them, and frankly, I’ve been struggling to overcome the ghosts of my past medical problems to make these calls. It would be so great if I could get a recommendation from someone who has done this treatment already!

While I haven’t shared anything new or exciting today, I hope you take comfort in knowing you’re not the only one who struggles and feels overwhelmed with making medical decisions, researching, and choosing new practitioners and treatments. You’re definitely not! Meanwhile, please let me know if you or someone you know has tried either of these treatments – I’d love to hear about your/their experiences!

On a side note, I took the photo above from a mountaintop recently. I can’t hike up a mountain, but thankfully there are a few near me with roads we can drive up. They close for the winter, but right now it’s a gorgeous day trip and definitely worth the effort.