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Post by nyxie63 on Jul 5, 2008 4:53:26 GMT -8
Yeah, I know. Your first thought is probably "Ew!", followed closely by "Why?" and "That's a bunch of ****".
Still, I'm going to try it to see if it helps to keep my liver enzyme levels down. I'm starting a new Rocephin schedule and part of my concern is being able to stay on it because of elevated liver enzymes.
The new schedule is 2g of Rocephin 2 x daily for 4 days, then 3 days off. This is a higher dosage than I was on before taking the 2 weeks off Rocephin, so I have some valid concerns about my liver.
Will be calling the dr's office on Monday to get copies of my test results in order to set a baseline. I'm having blood testing done weekly in order to monitor my levels.
Since this will be an ongoing experiment, I'll post my test results weekly as they come in.
You never know until you try.
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Post by cobweb2 on Jul 5, 2008 5:56:23 GMT -8
Nyxie- that was exactly the dose and schedule of my Rocephin-4days on/3days off. This is just a thought but I wondered if the length of delivery time effects liver. i.e. a' push' is like a bolus effect which may stress the liver more than a slow drip which allows the liver more time to process it. Mind you, I had the luxury of starting my drip and sitting at the computer for an hour -no rush or no schedule to keep up, or demands from other people since I lived alone at the time. I don't know if you can take a full hour 'time-out' while drippng? Anyway- hope it works. Rocephin did a lot for me-but Rifampin seems to have taken me further.  |
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Post by cobweb2 on Jul 5, 2008 5:59:19 GMT -8
ps- you're right-the title conjured up all sorts of disturbing images.  but I will say- My first cup of hot coffee in the morning always 'moves' me-I don't know if it's the hot liquid or the coffee. To further clarify- I drink the coffee, not.....well ,you know. |
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Post by LymeEnigma on Jul 5, 2008 9:12:09 GMT -8
My first thought on the matter was, "I wonder if this has anything to do with her gastroparesis?" My caffeine experiment, so far, seems to be working quite successfully in keeping the shut-down from occurring ... but I'm keeping the flow as one-directional as possible.  I'm big on experimenting as long as it is not extreme, is done with an objective mind, and is done (at least somewhat) under a doctor's supervision. I know absolutely nothing about the benefits or risks of regular enema use, so unfotunately I'm no help, there. I do feel that adding a little additional coffee to my daily routine seems to have benefited me. Might you get the same desired effect by increasing your coffee intake? |
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Post by LymeEnigma on Jul 15, 2008 21:54:52 GMT -8
TMI ahead....
Okay, so I had to share because I know that you guys are among the few who might appreciate this. I had my own reverse latte experiment tonight....
I thought I might have a margarita with dinner. I rarely drink, and with news of yet another suicide attempt performed by my mother, I figured I'd just be a glutton for punishment. I was fine ... until I finished the damned margarita. First it set of my trigeminal nerve, and then my stomach shut down and I started getting stabbing pains (enough to put me in tears, and I'm one tough cookie).
I decided I was not going to go to the hospital again, and so the experiment began. That was about a half hour ago, and I have to report that the stabbing pains have been reduced by about 50% and my entire digestive tract is back on track. I am experiencing a small amount of cramping, but that's to be expected given the digestive standstill I was at. I probably will not sleep tonight, but at least I will not be puking up tonight's rotted dinner tomorrow morning ... and I have to say that the sudden jolt of caffeine has left me with a lovely sense of well-being.
Disclaimer: I do not advocate experimenting on oneself; I'm simply nuts, disgruntled with the medical community as a whole, and perhaps just a tad too curious for my own good....
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Post by nyxie63 on Jul 16, 2008 2:44:31 GMT -8
LE, Glad the coffee's working!  And my experiment has been put on hold. Just when the doc says i can go back on the Rocephin, its' time for the insurance company to re-evaluate my case. So, no more meds for me until someone makes a decision. There's also the issue of a possible blood clot (sunday's ER experience) so they may want to pull the picc anyway. Stuck in limbo again........... |
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Post by itsybitsyone on Jul 16, 2008 5:51:23 GMT -8
I am NOT putting coffee up my butt. I draw the line RIGHT THERE.
I do, however, drink copious amounts of it.
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Post by LymeEnigma on Jul 16, 2008 8:30:23 GMT -8
I would prefer that it typically goes in one way and out the other, but I was in a desperate place.... Unfortunately, coffee is not absorbed through the stomach (it is absorbed through the intestines), so drinking any more was not going to help last night.
The positive effects lasted about two and a half hours, and then the shut-down and upper abdominal cramping began once more; Haku rubbed it out and I'm not sick today ... but the quick dose of caffeine dehydrated me very quickly, and I'm still working to rectify that.
Nyxie, I read about your weekend at LNE. I'm sorry that the PICC is being pulled and your case reevaluated. I think we all experience way more than our share of limbo, unfortunately, and I'm sorry to see that you're there once again.
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Post by itsybitsyone on Jul 16, 2008 8:49:57 GMT -8
Oh, LE...its OK that you tried. I'm not cutting you down. I am glad it worked.
I'm just saying...I just cannot go there.
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Post by nyxie63 on Jul 16, 2008 15:52:37 GMT -8
LE, It's not being pulled....yet. I'm still waiting to find out what the @%$& is going on with the insurance company.
Left a nastygram for the lyme doc yesterday. First to let them know I'm out of the hospital. Then I wanted to know why it was taking so long to get the letter of medical necessity together, considering they've known it was coming up for the last 4 weeks. And lastly, wanted to know why nobody's calling me back about restarting other antibiotics while I'm waiting for a decision on the Rocephin. They took me off the zith when my liver levels got too high and never told me to go back on. So currently, I'm only on plaquenil and malaron. Nothing else.
Seriously peeved.
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Post by cobweb2 on Jul 17, 2008 3:45:08 GMT -8
Ok-you all have lost me here.
LE -in your TMI post , reading between the lines, does this mean you actually did a coffee enema? I'm better , but some things still have to be spelled out for me.
And Nyxie- Am I to believe that you were admitted to the hospital for a possible blood clot in your picc line- and they refused to continue flushing the line while admitted? I flushed with Heparin twice a day, whether it was an infusion day or not.
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Post by nyxie63 on Jul 17, 2008 3:52:25 GMT -8
Cobby, yup. That's what happened. I went two days without proper picc maintenance. no flushes. the doc in the ER instructed them to not touch it.. period.
that's why i insisted they do a flush before i headed home. figured it was better to throw a clot in the hospital, rather than get home and have to come back.
and i do two flushes daily as well when i'm not infusing.. morning and evening.
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Post by LymeEnigma on Jul 17, 2008 8:29:18 GMT -8
Cobby, yeah, I went through with the deed; it definitely gave my system the jump-start it needed.
Nyxie, I would be beside myself right now. I hope that you hear back from your doctor soon.
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but I will say- My first cup of hot coffee in the morning always 'moves' me-I don't know if it's the hot liquid or the coffee.
