Hi All, I have HHV6 and EBV. My LLMD thinks that most of my symptoms come from these, and I have been on Valcyte for over a year with 0 improvement in the lab numbers for the viruses.
I was wondering what herbs/ natural type stuff I could use to try to kick them? Any thoughts?
Posted by timaca (Member # 6911) on :
I haven't used herbs, but you might want to get tested for enteroviruses too at ARUP lab.
I assume you have not felt any better on the valcyte?
Best, Timaca
Posted by Lymeorsomething (Member # 16359) on :
That's a long run of Valcyte not to see improvement. Plus valcyte can be tough on the body.
Have you adequately treated lyme/co's?
Some people use Lauricidan for viruses with some benefit. There is also Lomatium.
Posted by mookie333 (Member # 26021) on :
Timaca have you used Valcyte?? Has it worked for you, as I have the same issues and just got the script from my LLMD.. is it worth it guys???
Thanks!
Posted by WhitneyS (Member # 25666) on :
I tollerated the Valcyte fine-- no problems with it. I'm not sure what "adequate" treatment of Lyme and Co's is-- lol. I have been on abx for a year, herbal stuff detox stuff-- the usual stuff.
Ive had some improvement, but not really turned the corner.
I dont think I have really heard of the entroviruses. I will ask my LLMD at my Mon appointment.
Yea I might could switch to Valtrex too and see if that handles the EBV....
But any Herbal reccomendations too?
Posted by mookie333 (Member # 26021) on :
I hear that Olive Leaf Extract pills are good for viruses, i just bought some and I think they are from a company named Seagate.
I have worked myself up to 2 capsules a day. From what I read here, people like it for viruses. I have tried it in the past with no significant change. I took about a 3 month break from it. Now trying again.
I have HHV6 and EBV and who knows what else. I am having muscle testing next week for lyme stuff and viruses. Maybe I will have more direction then.
I have been on ABX for 1 solid year now and have made about 20% improvement only. So maybe like you I have viruses that are causing problems or just not on the right ABX combo.
I have just recently started rifing solidly for 2 months now and have not had a big herx..I am patiently waiting. ugh.
Posted by lululymemom (Member # 26405) on :
To really deal with them you need to keep your immune system healthy and strong. I would recommend regular use of Siberian ginseng (a 1:5 ratio tincture as a tonic), ashwaghanda, and astragalus. The best antiviral herb is lomatium. It is very strong. That together with the immune herbs can do a lot to keep you well.
Posted by chiquita incognita (Member # 30381) on :
Hi Whitney YAY! Buhner is an excellent source.
Here are two others that are science based and are major authorities in the field:
You *definitely* *Do* need to be under a doctor's watch with these infections, don't do this on your own my friend! Take care of yourself.
Posted by timaca (Member # 6911) on :
mookie~ I was on valcyte. It did help me and it dropped my antibody titers to HHV-6 and EBV. I also have Coxsackie B3 and B4 (enteroviruses) and other pathogens.
Best, Timaca
Posted by mookie333 (Member # 26021) on :
thanks timaca...I'm going to be picking up my script from the pharmacy today from the LLMD...But I will be reading about your journey first. Thanks.
Posted by Abxnomore (Member # 18936) on :
Here are some suggestions: monolaurin, Grapefruit seed extract, Olive Leaf Extract and Oil of Oregano.
Posted by WhitneyS (Member # 25666) on :
Awesome thanks guys.
I am on Buhner's Lyme Herbs, so I will check out the other ones he recommends.
I am using Grapefruit Seed Extract, and Oregano right now for yeast too.
Thanks for all your help! Isnt it cool-- how you just ask a question and all of a sudden you have lovely people who just wanna help! :-)
Posted by LAXlover (Member # 25518) on :
ONE (1 pill) OLE knocked my socks off even after 8 months of antibiotic. GO SLOW if you try it by using capsules and dumping some out. I think it definitely hit my HHV-6 that I tested + for. After my initial herx, I started over with 1/4 and worked up to 1 a day. I will do again soon. Good luck!!!!
Posted by LAXlover (Member # 25518) on :
Oops - just saw above that you are already using OLE!!!!!!!!!!!
Posted by klt9751 (Member # 28656) on :
I was just reading "Insights into Lyme Disease Treatment," and one of the Drs. (Dr. B) was saying that he uses "transfer factor in cases of chronic Lyme . . . when there is strong evidence that a viral infection is also an important part of the symptom picture; for instance, if a patient has high titers of HHV-6 or EBV."
Not sure if you've tried that . . .
Kelly
Posted by WhitneyS (Member # 25666) on :
Yea I think I may have to take the TF plunge.
I am notoriously tollerant to treatments, so OLE...I could drink it all day long and not herx. I dont know if it means it doesnt work for me....or if i just dont feel a herx.
Posted by alimzh (Member # 12412) on :
Do doctors generally treat patients with positive IgM titers or do they also treat when only IgG is positive (and the patient has symptoms)?
Best, Timaca
Posted by chaps (Member # 25286) on :
EBV also gives me at least 85% of my symptoms.
My doc prescribed Famciclovir. When I'm on that stuff, I feel much better in a matter of a few weeks.
When I come off of it, I backslide.
I bought Elizabeth Noble's e-book on treating EBV with diet and herbs.
Nothing she recommends in that book makes a bit of difference. My EBV laughs at OLE.
I'm trying to find an effective rife frequency for EBV. No one has been able to recommend a good one as of yet, and I'm not paying Char Boehm for frequencies that may or may not work.
Posted by WhitneyS (Member # 25666) on :
Chaps I am using 880 for EBV on my Coil, I dont really know if its working, I havent been doing it that long.
Posted by mookie333 (Member # 26021) on :
Whitney, fyi..I have lyme HHV6 and EBV, as well as coinfections. I have tried the transfer factors for 1 solid year and it has made no differnce in any of my numbers.
I still have low white cell counts, I still have elevated ebv and hhv6 titers. I have used OLE and valtrex. With no noticible difference...I kinda wonder if something else is going on? Or if it's just Lyme that holds us from making progress...or maybe XMRV??
All interesting thoughts..I think I will give valcyte a short run and see if that makes a difference.
It is so funny how everyone is different and how all types of therapies work for some and not all..for me tho...I think my viruses are so chronic...I need to coax them out of me...this is why I am trying rifing now..so we'll see if that makes any difference.
Posted by mookie333 (Member # 26021) on :
also chaps I can give you a list of rife frequencies for ebv...I have 3 books..Rosner and Nenah Silver..I could pass them on for you if u need them.
Posted by chaps (Member # 25286) on :
Thanks, Mookie, I sent you a PM.
My MD recommended that I go on Valcyte (he also calls it "out-of-cyte," referring to the cost) but I chose to stay on Famvir because 1) it works, and 2) it's safer when examining the side effects of both. I asked the doc about side effects and he said, well Valcyte has caused cancer in some patients, but... and I didn't listen past that point, I had heard enough.
Famvir costs about $1,339.00 per month, Valcyte cost upwards of $2,000 per month.
The doc that first prescribed Famvir for me also used to put patients on Valtrex if they didn't have insurance because it's a lot less expensive than Famvir and is still reasonably effective.
As far as the EBV frequencies, I've tried 880 with my doug coil. I hasn't seemed to do a thing. 880 is implicated for a lot of other things, too, so I kind of doubt its efficacy.
Posted by WhitneyS (Member # 25666) on :
Chaps can you send me your frequencies for EBV too please :-)
Posted by sk8ter (Member # 8671) on :
me too please Posted by ticksickfamily (Member # 22786) on :
sk8ter, your mailbox is full.
Posted by WhitneyS (Member # 25666) on :
Hi All, I just wanted to updated-- I got back more of my HHV-6 and EBV results and it seems they HAVE gone down with the valcyte. They are both still in the high zones, but have been cut in half but the 1 year on Valcyte.
I didn;t want to give wrong information to people-- so it seems it has worked for me....but I still have active EBV and boarderline HHV6, so now I will herb it up and will be using Valtrex for the EBV.
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