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Hi, I've had CFS for decades, tested positive for EBV and CMV back in the 90s, but am just starting to do research again to see what's new recently.
I have a history of "atypical" anorexia and was on parenteral nutrition for 10 years until in '05 my appetite mysteriously reappeared and stuck around for 7 years, until this year. (Did a gluten-free diet once for about a year, didn't seem to make any difference).
This year, after a period of severe stress, the anorexia has resurfaced with more nausea, and I now think it's virally related - severe inability to eat, with almost constant nausea or queasiness, feeling of a "lump" or huge amount of gas in the gut, early satiety, to the point where sometimes I can barely even take a few sips of water without the intolerable nausea. Sometimes I can eat tiny amounts and then be too full for hours afterward.
If I force too much, my gut gets so uncomfortable that it keeps me up at night and I'm even less likely to get food in the next day. When my gut is really bad, I often have very low grade fevers and malaise. When the fevers are gone, my gut is a little better.
So I don't force too much (can sometimes barely do a few ounces of a predigested protein drink, and crackers). I became so dehydrated recently that I was in the hospital for a few days getting IV fluids. The conventional labs are negative, except for ketones in the urine.
They will not do parenteral nutrition unless prealbumin is off, and mine was fine. They and my GI doc suggest endoscopy. (I had a harrowing experience with that many years ago, so am reluctantly considering it). CT scan was ok except for silent gallstones.
My "gut" feeling is that there isn't any blockage but lots of inflammation due to viruses. Still I never heard of anyone having this severe inability to eat in the absence of a physical blockage of some sort. I have no vomiting, bowels are normal, doesn't point to a blockage.
So I need to do some info gathering on the viral aspect. I don't have access to a local doc who specializes in CFS. Mention of "chronic enterovirus" and docs dismiss the chronic part and say that I don't have diarrhea, so no.
I have insurance but can't afford to spend a lot of money on private phone consults, and am not well enough to go traveling to see specialists out of town. although I'd like to know what's available and take it from there. I wish there was a specialized in-patient clinic.
I'm extremely sensitive to all kinds of meds, not surprisingly, so it would be best to work with a specialist, although maybe not practical. I'm a natural health counselor myself, so I'm open to alternative approaches, and would be reluctant to use antiviral/antibiotic drugs, but the idea of immune modulators sounds good to me.
I was just about to go order some Equilibrant, and then I saw the info on the methylation protocol. I don't think throwing a whole bunch of new supplements at me all at once will be a good idea, and I just don't know how to take this step by step.
Any guidance on how to proceed?
Thanks in advance!
Karen
I have a history of "atypical" anorexia and was on parenteral nutrition for 10 years until in '05 my appetite mysteriously reappeared and stuck around for 7 years, until this year. (Did a gluten-free diet once for about a year, didn't seem to make any difference).
This year, after a period of severe stress, the anorexia has resurfaced with more nausea, and I now think it's virally related - severe inability to eat, with almost constant nausea or queasiness, feeling of a "lump" or huge amount of gas in the gut, early satiety, to the point where sometimes I can barely even take a few sips of water without the intolerable nausea. Sometimes I can eat tiny amounts and then be too full for hours afterward.
If I force too much, my gut gets so uncomfortable that it keeps me up at night and I'm even less likely to get food in the next day. When my gut is really bad, I often have very low grade fevers and malaise. When the fevers are gone, my gut is a little better.
So I don't force too much (can sometimes barely do a few ounces of a predigested protein drink, and crackers). I became so dehydrated recently that I was in the hospital for a few days getting IV fluids. The conventional labs are negative, except for ketones in the urine.
They will not do parenteral nutrition unless prealbumin is off, and mine was fine. They and my GI doc suggest endoscopy. (I had a harrowing experience with that many years ago, so am reluctantly considering it). CT scan was ok except for silent gallstones.
My "gut" feeling is that there isn't any blockage but lots of inflammation due to viruses. Still I never heard of anyone having this severe inability to eat in the absence of a physical blockage of some sort. I have no vomiting, bowels are normal, doesn't point to a blockage.
So I need to do some info gathering on the viral aspect. I don't have access to a local doc who specializes in CFS. Mention of "chronic enterovirus" and docs dismiss the chronic part and say that I don't have diarrhea, so no.
I have insurance but can't afford to spend a lot of money on private phone consults, and am not well enough to go traveling to see specialists out of town. although I'd like to know what's available and take it from there. I wish there was a specialized in-patient clinic.
I'm extremely sensitive to all kinds of meds, not surprisingly, so it would be best to work with a specialist, although maybe not practical. I'm a natural health counselor myself, so I'm open to alternative approaches, and would be reluctant to use antiviral/antibiotic drugs, but the idea of immune modulators sounds good to me.
I was just about to go order some Equilibrant, and then I saw the info on the methylation protocol. I don't think throwing a whole bunch of new supplements at me all at once will be a good idea, and I just don't know how to take this step by step.
Any guidance on how to proceed?
Thanks in advance!
Karen
