posted
About two months ago I began herxing terribly. It seems like every day a new strange symptom arrives or old ones flare up. I'm pretty used herxing by now so I have ways of coping however one symptom concerns me.
Ever since I first became ill nausea has been a huge problem. During the first year of active LD and cos, I threw up at least once a day and usually several times a day. I actually broke a rib once while throwing up.
It took awhile to find meds to stop it but I have been on Phenergan for nearly two years and Zofran sublingual tabs for breakthrough nausea. The Phenergan really helped and for a year and a half I haven't had any breakthrough nausea until three days ago.
For the past few days the nausea was unpleasant but tolerable. I was able to control it with a soda and tums. But tonight I came right to the brink of vomiting and the Zofran barely stopped it. Before I took the Zofran I had a wierd metallic taste in my mouth.
What I am really concerned about is sometimes when I start throwing up I can't stop and I end up in the ER. So far that has happened three times. Even if I only throw up once and miss my meds, then I get even more sick in a viscious cycle.
Does anyone know what causes nausea to flare in LD and cos? Could it be a specific co-infection? Could there a connection between the metallic taste and the nausea? Any other ideas?
posted
Oh, I can empathize with the nausea. This symptom was the first symptom I started with, was the most debilitating symptom and is the one remaining symptom I have after 18 months of treatment.
My nausea peaked early in treatment when I was on Biaxin/Plaquenil. It was so bad I literally could not function. Couldn't sip on water nevermind eat. Wound up in the hospital with acute pancreatitis, extremely low BP all likely due to being so dehydrated. Anyway, with continued treatment, the intensity of the nausea isn't as bad but it is with me on a daily basis and sometimes can make it almost impossible to get through the day. It seems I have stopped seeing improvements.
I see a very well known LLMD and he said he had never seen a case like mine in terms of intractable nausea after this duration of treatment. He decided to try to treat BLO since it is about the only class of drugs I haven't tried. I haven't seen any difference.
I've been doubting that in my case, that my nausea is due to an active infection and have been looking for other possible answers. I recently had a reputable gastroenterologist tell me that he thought I had Vesicular Hyperalgesia and that he sees many patients like me. He said the condition is often brought on after an infection and the best we can do is to try to treat the symptom. He suggested Tigan (which I haven't started yet).
I too get that metallic taste sometimes. I read somewhere it can be an indication of kidney issues.
Be sure to have your calcium levels checked (if high, hormone condition can cause chronic nausea) and your cortisol levels checked.
In terms of what infection it could be (i.e. lyme, BLO, babs.) I unfortunately don't have any answers for you but will certainly be interested in what others might have to say.
By the way, did you happen to have a Fry smear done? I came back positive so I think I'm hoping this MIGHT have something to do with why I feel the way I do...
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btmb03
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posted
So sorry you're dealing with this for so long. Great info above.
Ever think of central nausea? Sorry don't know any websites but my nausea did get better over time with treating the brain thru neurofeedback and probiotics. Many practitioners all over the country.
posted
Its not going away this time. Its getting worse worse every day. I am having a hard time eating. Everytime I eat more than a string cheese stick I get really bad nausea despite being on Phenergan around the clock.
KS I thought I already responded to your post but I can see I didn't. LOL. Thanks so much for taking the time to respond. How long did you have nausea before you began treatment?
I tried googling Vesicular Hyperaglesia but nothing came up but technical medical articles. Would you mind explaining what it is? That's interesting that your LLMD says he has never seen such a bad case.
Thanks for all of the good information. I am looking into everything that you mentioned. I figured someone had to have the same issue but I am really surprised by how rare this seems to be.
Is there anyone else out there like us?
btmb03 , I am already on probiotics but I am interested in neurofeedback. How does that work? What kind of equipment do they use? Can it be done at home?
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