Northstar--I put my name on 2 waiting lists. Philly is 3 hours away, but I'll go that far if I have to. Too sick to drive--my husband has become chauffeur for the past few months.
My primary has been working with me since October. I've done orals, IV for a month, now weekly bicillin injections. Nervous system problems are improving, but I now have GI problems and suspect co-infections. He doesn't seem to know how to deal with that. I'm losing weight and the list of things I can eat is shrinking rapidly.
I have all the Buhner herbs but have not been able to tolerate the protocol. I hope I will after things calm down enough.
Betty G--thanks for the info. I've spent the week on the phone with support group people, but have so far been unable to find a doctor who can see me soon. I've printed your PM and will begin calling those names today.
I just replied to your PM then noticed you had sent the info about the yeast. I've been on probiotics since before I started abx. I take Kirkman's PB Gold twice a day and Culturelle once a day. Both of them are expensive. I just added one more after reading your post, but I have to go slowly or I'll blow up like a balloon. I'll try increasing by one a day.
I've been on a prescription antifungal since day one. First diflucan, then nystatin till today-- I eliminated it to try to narrow the field of what could be causing the GI problems.
I haven't eaten sugar for years, and have a very clean, high-quality diet. To avoid yeast, I also eliminated fruit once I started the abx. I don't eat much in the way of carbs, except vegetables. Now I don't seem able to tolerate grains at all. So I'm really feeling the need for help--can't eat much at all now, and losing weight fast. And the GI problems did start with the abx.
peggy, have you been tested for food allergies?
i never had until last 4-06. MERIDIAN LABS did testing on 95+ foods; cost was $95.
guess what? i'm allergic to following:
GLUTEN -- wheat and rye items
CASEIN -- cow's milk, cheeses, egg WHITES, and garlic
they really upset my gi system; so that is MAY be happening to you also .... gluten!
NOTE: hospitals can now do a CHEEK TEST reasonably to test for gluten sensitivities! a local woman here w/2 celiac sons got our hospital to do this just late last year!
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Sorry you are having trouble. You are lucky though that your primary is doing as much as possible.
Some other alternatives to the GI problem are
a. bartonella, as has been mentioned here many times. The test is even less accurate than lyme, from what I read. I have heard it mentioned as affecting mucosa.
b. malapsorption: this is a syndrome, with causes such as fungus (candida), parasites, other bacteria (including bartonella), and reduced enzyme production by the body.
Allopathic doctors scoff and take notes if you mention it. So, the problem has to do with nutrient absorption.
So, I have read here that people have tried these (based on memory so I assure you there are more)
anti fungals, check body pH, work with parasite cleanses, take enzymes, boost supplements (amino acids , minerals, vits, omegas, etc.), or attempt metal detox (which are tied up with the candida), adding nutrient dense foods, and even fatty foods such as nut butters, avocadoes, butter, bananas sparingly, to pack in some extra calories.
There has been some discussion of muscle wasting here, too. Maybe there is something of help if you do a search.
Betty G--I was tested for food allergies about 5 years ago, and the only things I was allergic to was stuff I never ate anyway. And I'm eating so little now (vegetable broth, for example) that I doubt that's the problem. But it's worth checking, so I'll ask whatever doctor I decide to go to. I don't eat gluten or dairy or eggs anymore.
Northstar--Yeah, those allopaths are good at scoffing, huh? I was on antifungals till today, but now have eliminated all prescription drugs (except for the bicillin shot I got yesterday) in an attempt to narrow the field of what's causing the problem.
I take enzymes with every meal, and more supplements than I can count (Burrascano's guidelines). I'm taking lots of chlorella for detoxing, and have been for awhile.
The only nutrient dense food I can handle right now is a Metagenics protein bar. That's supplying me with most of the calories I consume. It works for me because it seems to be not so much a question of what I eat, but how much. The less the better--my stomach just won't handle more than a minuscule amount. So the protein bar gives the most nutrition with the least bulk. Frequently I can eat only half of one. Don't know what I'd do without it.