Lyme and the Earthquake Supplies

[cjsmith]

Like many Californians I've got some edibles tucked away in case of What If.

I've always had the luxury, before, of being able to eat things that are easily preserved. Grains. Pasta. Freezedrieds. More grains. Canned things. Emergency ration bars. A little jam. Lots more grains.

Not only is this not true any more, it's likely to be not true for a long time, measured in years. What I thought were my earthquake supplies are now clutter, and except for some basic stuff like the ability to purify water, I don't have earthquake supplies at all.

*sigh*

I hate this disease.

Comments

[cjsmith.livejournal.com]

I can certainly understand why you've been sporadic with LJ! You've had a lot going on! In your shoes I'd have ditched most if not all of my reading by now. :-) :-)

Honestly, I too am having trouble understanding the food thing. Early on, I was sure that it was the medication: killing off the good bacteria makes room for stuff like yeast to take over, so I shouldn't feed stuff like yeast. On the other hand, when I asked my doc about it last week, she said "this is not a yeast control diet". On the other other hand, when she suggested I experiment, she described exactly what a systemic-yeast sufferer would feel if he or she ate yeast fuel. So I haven't the foggiest what to think any more.

I may or may not be right about "years". The only data points I have are my square dance friend in NJ and my LJ friend locally, both of whom have the chronic form (as I do), and both of whom have been under treatment for multiple years already.

My doctor has at least said, unequivocally, that we are not hoping for a cure here. We're hoping to achieve an equilibrium I can live with. That sounds ominous.

The good news is that if I experiment and I feel fine, I can go ahead and eat stuff. I have been postponing experimentation until I can get back on sleep meds that don't make me crazy. :-)

[hopeforyou.livejournal.com]

It IS confusing, and believe me, I get confused too.

What I've learned about dealing with the diet around this disease is that there are general guidelines -- some are 'highly recommended to follow ideas' and make logical sense; some are 'experimental and based on weak/not enough data ideas'.

Keeping sugar and carbs low to avoid Candida growth is just one piece of the entire philosophy. My understanding is that there is some connection between gluten and immune system functioning, and also the way some people process sugars, so that has been on the no-go list. A number of supplements are recommended to boost the immune system, and any number of common food allergy items are often no-go in case the patient has an undiagnosed allergy because fighting off allergies influences your immune system's ability to fight off disease.

I did some research on the diet a while back and I've been at this so long that I have experimented for myself, or , like you, I'd go crazy. It's been TWO years of coping with this. I think that using sugar in moderation is okay, but I have to be careful not to have too much. I was gluten-free before this started, so that's not too hard... I rarely cheat on that.

About the biggest setback I've clearly had around diet may (and I say may, because I don't really know what's going on, and could have some nerve problems in my digestive system) have been when I got an intestinal infection and trouble digesting food so badly it hospitalised me. I think some of that *might* have been caused by not doing enough probiotics -- I was eating yoghurt daily, but not doing the live bacteria supplements as well, and apparently I need that, too.

I don't really know if there is a cure for some of us. Or all of us. Animal studies have shown that there is still live bacteria in them after the IDSA treatment, and I know people who have bacteria still present, years later (and not just the anti-bodies for them).