Guess I'm the odd man out here, as I totally DO get where you're coming from.
I think this is a great topic, I'd like to learn more about this as well. Unfortunately, I don't think the majority of people in this forum see things this way.
I think it's a valid question, especially considering you're working with Lyme. It's all so complex, so many moving parts. I often pose these questions to myself.
However, how do I know that I am not possibly hurting my body by taking the wrong treatment(s) or taking them too intensively, not detoxing enough, etc?
I mean, you could be...
There are treatments that could mess you up. You could be taking the wrong dose. There's always the possibility of treatment interactions. And there are definitely treatments that could flat out exacerbate everything. Plus the detox thing is a concern in my opinion.
For instance, I was using N-acetyl-cysteine (NAC) to treat Coxsackie B3, and because it's a common ME/CFS supplement to take. But then I found out it increases Chlamydia Pneumoniae replication
, which I also have. So I stopped taking that.
I don't have answers, but here are some tips:
I strongly believe that...
- Research (drug & infection) interactions - I look for any possible drug interactions for every drug and supplement I'm taking. And I do Google searches for all combos of [supplement] [infection], like "ldn coxsackie", "ldn enterovirus", "ldn ebv", etc etc.
- Dosage check - I check multiple resources to verify dosage. And see how long I can "safely" take it.
- Re-check labs - I regularly re-check to make sure titers are decreasing. I didn't see any effect after being on Ginkgo Biloba extract for a time.... so I stopped taking it. You can re-check labs for intestinal permeability, basics like blood counts, liver function, and whatever else.
- Detox support - If needed. I'm currently on Milk thistle and Dandelion root for detox support. Milk thistle helps to regenerate the liver, it is a super antioxidant, removing pollutants, going after pathogens, and preventing free radical damage in the body. Dandelion supports healthy liver function and natural detoxification in the body. Increases bile production. helps the liver flush out toxins. Bookmark this two part blog on ME/CFS detox and help on the detox.
- Document known herx reactions - I find it helpful to research herx reactions, and make note of when to expect herxes. For instance, I knew going in to expect herx from Valtrex 4-6 weeks in.
- Listen to your body - I can usually tell I'm herxing, when I suddenly have a very slight sore throat, a very slight headache, possibly a little nausea, and have to sleep for 14+ hours (amongst other signs that now make sense to me).
- Go slow - This tip is odd in the sense that I know to do it, yet I do not do it. But they say to not start multiple new supplements at the same time. And to start w/ low dosage, and to back down on dosage if needed.
MANY quit treatments too quickly, and...
#1 has been a major issue for those hoping to recover
It makes sense. We don't freakin know what to expect. We are on our own for treatment. In the future (like 5 yrs and 50,000 studies from now), I'm sure doctors will be able to give precise treatment protocols that minimize this stuff, and that they'll know and tell you exactly what to expect so you can confidently go through the treatment process.
But for now, CFS patients will remain largely skeptical and apprehensive regarding treatments. And maybe that's for the better.
This is an uphill battle. For ME/CFS, our bodies have already "stabilized" or accepted this altered state of functioning. You can feel pretty okay by doing nothing. You'll still have the PEM, and whatever your normal symptoms are. But by treating aggressively, you're definitely going against the grain. Of course it's going to be difficult... you're fighting a multi-faceted SET of adversaries simultaneously, in a body that is ill-prepared to do battle.
How long can it take to start to feel better after a treatment has commenced?
If it's something like taking Valtrex for EBV... then I just look at all the research and past studies to get an idea. And I focus on lab results, and try not to pay much attention to how I feel. I'm pretty committed to looking at my numbers to gauge success, and confident that when my infections are back to "normal" range, my symptoms will improve accordingly.
If it's something else, like vitamin supplements, or CoQ10 or something, I don't really expect to feel much better from that sort of treatment. I take supplements to support the long-term recovery. And I just try my best to trust the supplements I'm on, knowing that I've done my due diligence.
And that's why I have a problem w/ the List of ME/CFS Recovery and Improvement Stories
thread. I just do not believe there are many ME/CFS cases where a single drug or supplement would result in a significant, lasting improvement.
Hypothetically speaking, if you were to take the perfect treatment plan for yourself, I'd imagine you'd be healed up in under a year. Of course, this assumes one has actual ME/CFS. If it ends up being just Lyme, or something else, then I'm guessing recovery wouldn't take as long. Again, theoretically.