The doc feels that Coxsackie A and EBV are both recent reactivations and should be tended to. (I have low level chronic HepC, as well, but not sure how that plays into this.)
What can I expect from antiviral treatment? Do you get worse before better? Do you just improve? Do you have to be on them long? How did it affect any other treatment you were on?
So many questions, so little brain.
I have been prescribed Valtrex, grapefruit seed extract and possibly lypospheric(?) VitC. (I am currently on treatment for Babs, about 3 months in.)
Would any of you be willing to relate your experiences so I can get an idea what I'm heading into?
Thank you for any light you can shed.
(please note: I am very worried I am going to get the "pest of the month" award.) Posted by iceskater (Member # 8655) on :
I did well on antivirals: valtrex for Epstein Barr. Had a little more stamina and less fatigue. Was on it for two months.
Posted by trueblue (Member # 7348) on :
Thanks Iceskater!
a little more stamina and less fatigue, yay!
How was the length of treatment decided? Was it a difficult med to take?
ok, I'll stop with the questions (for now).
Thanks so much for replying.
Posted by lymie tony z (Member # 5130) on :
When I have taken amantadine I barely noticed any improvement or decline.
I was taking it with Alinia(anti parasite) and azythromicin...with metronidazol thrown in on weekends.
I don't know if it was the correct antiviral or if the dose or length of time I took it could have been the problem.
zman
Posted by minimonkey (Member # 8693) on :
I just started Valtrex at my request, and I think it is helping me a lot. I have *a lot* more energy than I did before starting it! (Don't know how long I'll be on it.) I didn't have any side effects from it, but then, I rarely get side effects from drugs for some reason.
Posted by trueblue (Member # 7348) on :
I'm sorry it didn't work out for you, Tony, for whatever reason. I did have to read the post 3 times until I understood it. It may be nap time around here. Thanks
How recently just started, Mini? Days? Weeks? I'm glad it's working out well.
I'm waiting on a PA program to come through before I can start. I didn't know whether to be eager to start or apprehensive.
I think I'll call on Monday and see when it will be here.
Posted by trails (Member # 1620) on :
i have taken acyclovir orally on and off for a few years for cold sores--facial herpes. sometimes my cold sores get really bad with the lyme and I have taken it for a year straight. It keeps the cold sores away but never did anything else that I know. I tolerated it FINE. no side effects at all.
funny thing is it has been almost a year since any cold sores---i think my immune system is really in hyperdrive. no colds, no nothing, just lyme symptoms and endometriosis pelvic pain. ug.
good luck!
Posted by minimonkey (Member # 8693) on :
I've been on it about a week. I started feeling better the second day on it -- I'm on 2 grams a day.
This is particularly cool considering I am off abx at the moment - (I had a big toxicity reaction to them, and NP is having me take a break to clear my system before adding a different one in). I've had these toxicity/allergy-type reactions to abx in the past, too -- it is different from a herx.
I asked for the antivirals because I had a gut feeling that virii were playing a part in my overall illness. I'm still awaiting the results of the several viral titers I had run -- but I know for sure that I have had active EBV on and off for years, and I was showing signs of it again. My NP says that most of her chronic lyme patients show active viral infections, sometimes several at a time.
Posted by trueblue (Member # 7348) on :
Thank you trails, It's good to hear that this type of drug is tolerable. I really had no idea what to expect.
All the liturature on it is about viruses that I don't "think" I have symptoms of. Never had a cold sore but do get canker sores in my mouth.
I think that's likely a different virus, but who knows? Maybe the Coxsackie, which is of the foot and mouth variety. (Ha, I didn't say foot IN mouth but that's also possible.)
I'm glad you have no more cold sores but we definately need to get you sorted on the endo and lyme stuff (too many ughs). I do hope for the very best outcome for you, my friend. Hey and you can pee!
(I spoke to my friend in the not too similar circumstance and as of yesterday she can also pee! Yay, we can have a PYP party, now!)
Thanks for the good luck wish. Posted by trueblue (Member # 7348) on :
quote:Originally posted by minimonkey: I've been on it about a week. I started feeling better the second day on it -- I'm on 2 grams a day.
This is particularly cool considering I am off abx at the moment - (I had a big toxicity reaction to them, and NP is having me take a break to clear my system before adding a different one in). I've had these toxicity/allergy-type reactions to abx in the past, too -- it is different from a herx.
I asked for the antivirals because I had a gut feeling that virii were playing a part in my overall illness. I'm still awaiting the results of the several viral titers I had run -- but I know for sure that I have had active EBV on and off for years, and I was showing signs of it again. My NP says that most of her chronic lyme patients show active viral infections, sometimes several at a time.
Hi again MM, It looks like the script is for 500mg breakfast and supper. That's after getting out my rosetta stone and deciphering doctor handwriting.
Thank you for responding to the threads I started. I have to tell you that what you post is very, very familiar to me on many levels.
The type of pain issues, that toxicity/not a herx thing... I can't remember what else at the moment. (Have to go back and look.) you describe me to a great extent. Good thing someone can because I sure can't.
I do tend to have a quite a sensitivity to certain meds and not to others. I'm going with this will be in the latter group and I'll see some improvement.
The doc had already tested me for viruses and was going to go in and ask if they could be treated and was beaten to the punch. I'm thinking I may have finally found an LLMD that can help me. It's been a long time coming.
Thank you for all your input, it's greatly appreciated.
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