I have had my Lyme I believe under control for some time, but it the last 2 years I have been really tired, and getting worse. I thought it was the big M, I'm 52 and it still may have something to do with it.
But, about 6 mths ago my doc reran my EBV titers, because there is new protocol. Well, new protocol says that if your are 4 times higher then what is considered positive, that you should be retested in 4-6 mths for possible chronic EBV.
My test came back 16 times higher than a normal positive result!!! Yes, I said 16. My doctor thought that was REALLY high. About 4 weeks ago he reran the test again as protocol calls for a second test to determine if a definite EBV is in chronic form.
Just got the results of my secdond test today. Mind you, I have been feeling more and more run down, almost coma like at times and my eyes burn and burn. This test came back 24 times higher!!!. Mine was 2414 and normal IGG is around 140.
Anyone had this looked into when not seeming to get better?
Posted by lymebytes (Member # 11830) on :
Well this should make you feel better my EBV titer was 10,000 YES 10,000. My LLMD said he had NEVER seen a titer so high and at first thought it read 1,000 he was absolutely astounded...and I wondered why I had a lot of nueropathy! Yes...EBV causes nerve pain.
I was put on Valtrex 2 years ago, titers are now down to 5,000 and I am thrilled!
I have other viruses as well, HHV6 and HSV and Valtrex is working on the HHV6 too when it isn't even suppose to.
All this with Ld, Bart, Ehrlichia = PAIN unbelievable!
Hopefully he will put you on an antiviral...they will come down in time.
These are viral co-infections, not uncommon w/Lyme, my viral issues are severe because I had cortisone before knowing I had Lyme.
I am very interested in this. What is the exact test that you need done to test for EBV ? I know that my blood work has shown antibodies to EBV and doc (not my llmd) said that that just indicated "past exposure". I have had almost unbearable nerve pain for the past year and just getting sicker and sicker. My rheumatologist insists it's "fibromyalgia". How do I request a test for "active" EBV????
Posted by pamoisondelune (Member # 11846) on :
Lomatium is an antiviral for me, for herpes simplex I lip sores--- stops them cold.
Could you people on antiviral medicines also try some Lomatium, to see if it works on other kinds of viruses?
I'm wondering if it would work on bird flu, too.
It's a wild plant on the Western plains, used medicinally by American indians, and anecdotally has cured lyme.
Here's a quote from a company selling it:
anti-bacterial herbal medicine. The anti-viral and anti-bacterial properties of Lomatium dissectum have attracted the interest of herbalists and Naturopathic physicians who are utilizing it in the treatment of today's most difficult viral diseases.
It may be part of a protocol in the treatment of Hepatitis-C, Influenza, HIV, AIDS, Chronic-fatigue, Pneumonia, Bronchitis, Herpes simplex, Sinusitis, and common Colds.
The root of the Lomatium dissectum plant is a natural medicine with extensive traditional use by the Native Americans of the Pacific Northwest and Northern Nevada where it grows.
It was used primarily for upper respiratory infections, although a great many other uses have been noted. When the influenza epidemic hit Northern Nevada in 1918, Ernst Krebs MD of Carson City was surprised to see the local Washoe people recovering, and he inquired as to their medicine.
They called it "Toh-sa" or "Do-sa". Dr. Krebs called it Balsamea, due to its biting odor of balsamic resins. Botanists named it Leptotaenia dissecta until 1942 when it was renamed Lomatium dissectum, a slightly different classification.
End quote. I've bought from 2 other internet sites;, here's the link to this site:
"There are excellent Lomatium products available from MTN. Oaks, LLC. PO Box 155. Doyle CA 96109. Call Toll Free: 1-866-775-1570 or email at: [email protected] "
Posted by janis1023 (Member # 15942) on :
I was shocked to discover Tagamet is good for herpes. Would that work for Epstein Barr also?
Jan
Posted by BOEJR (Member # 1734) on :
Hi all,
I tested at 1600 oh brother! I take olive leaf extract twice a day and have been doing so for months. It is an antiviral.
There are many herbals out there that are just as effective as conventional drugs if not better as long as you stick to them.
I think this is one of the reasons I bounce back quickly from a flare up
I don't feel as tired all the time like when I did spend a year with mono
Hope this helps,
Julia
Posted by Jellybelly (Member # 7142) on :
Wow Lymebytes!!! That is crazy high. My big question is???? are you feeling better with treatment?
Gosh, if I could just not feel so dang tired all the time and if this fixed my eyes I would be elated!! I could probably even deal with the tired if my eyes felt better.
I am glad I am not alone here. I was given Valtrex last year to see if it would fix my eyes. It didn't, but my heart rate slowed down. Wasn't sure if it was the Valtrex or not. Have been put on Valcyte this time which is supposed to be much stronger than Valtrex, and will hopefully only take 6 months.
I am a little concerned, because reading the papers that come with, it is used in AIDS and is major strong, It has been very useful in slowly EBV, like 75% successful.
I need to do some more research on it though.
Posted by Jellybelly (Member # 7142) on :
Hi Corinne
The tests I had done were actually done with LabCorp, so likely covered by insurance for most.
I had the "EBV Nuclear Antigen Ab, IgG" and "EBV Ab VCA, IgG". Both read sky high according to their POSITIVE scoring.
Anything 4 times higher than their highest positive is considered chronic.
Tests must be done 2 times, the initial for a baseline and than many months later to verify I quess whether or not it is a new infection and the possibility that your immune system cleared it. If it is still high then you are considered chronic, not until than.
Posted by AliG (Member # 9734) on :
On Quest, the high was .90, mine was 3.33.
I wonder if this "new protocol" was what my LLMD wanted to "look up".
He still hasn't commented on my "positive" EBV.
Perhaps this could be the reason for not having me come back for 3 months(???!) to re-test then. ???
I sure wish he would let me in on what he is thinking.
Hmmmm, I wonder if everyone here with EBV has low CD-57 too. Perhaps another puzzle piece?
Posted by pingpong (Member # 13706) on :
FWIW, one consideration might be coconut oil, the constituent fatty acid, lauric acid disrupting eb's viral lipoprotein coat, or monolaurin caps, the latter being a modified form aof lauric acid, the latter form supposedly being the form to which the body converts lauric acid. I believe the dose is high.
theres lots of links on coconut oil in the archiveS.
Posted by Jellybelly (Member # 7142) on :
up for Lymebytes, how are you doing now?
Posted by timaca (Member # 6911) on :
Here's some info for getting tested at Focus Diagnostics lab for several viruses.
If you work with your local Quest Lab they can send it on to Focus, for Quest owns Focus. Ask your doctor to order tests from Focus.
Luaricidin pellets are supposed to be antiviral. I herx on 3 pellets. I spoke with Brian Kabara, the discover's grandson. Lyme patients should start on with 1 pellet at each meal. Strong herxes. Lauricidin is supposed to be good for Herpses viruses. bacteria, and protozoa. It's not a cureall, but may help.
CherylSue
Posted by AliG (Member # 9734) on :
I just read that Malaria can reactivate latent EBV. I'm wondering if Babs can do the same thing. Have you been tested/Txd for Babesia?
Posted by timaca (Member # 6911) on :
Alig~
I believe it is possible for people who are ill with tick borne diseases to end up with reactivated viral infections. It is important to get tested for viruses and Cpn too.
Best, Timaca
Posted by lymebytes (Member # 11830) on :
Hi Jellybelly,
Yes I am feeling slightly better w/ every small change. My LLMD's believe the viruses have caused me most of my pain...but with LD and co-infections - who knows.
Valtrex is really a long term drug. Valcyte..makes me laugh what you said. I won't take it. I read the insert and mine reads, "Don't touch your face or eyes after handling a tablet".
WHAT? And I am suppose to put that in my body??
I was told by one of my LLMD's that it is a "miserable" drug. I guess it makes you feel sick...so I said forget it, I'll stick w/Valtrex.
If all you have is EBV, there are many other antivirals to choose from. Valcyte is for CMV and HHV6, if you don't have those, I'd get a second opinion before I ever took Valcyte..not to mention I have read posts at a viral forum and many report Valcyte didn't work - here are a couple more choices, valtrex is on this list too: http://www.herpesweb.net/general/treatment/opt08.htm
EBV can also come down on its own in time..they just take time, but I would take valtrex, famvir or some "easier" antiviral so it doesn't replicate.
(CORDOR - please see the link in my post above, tells all about testing)
Take care.
Posted by minimonkey (Member # 8693) on :
my EBV came back at 3896 -- not quite 10,000, but still quite high. I do find Valtrex pretty helpful with this, though I get hit with bad fatigue anytime I let myself get run down at all.
It is my understanding, too, that Lyme reactivates viruses that would otherwise be dormant.
![[lol]](graemlins/lol.gif)
![[Roll Eyes]](rolleyes.gif)
![[shake]](graemlins/shake.gif)
![[confused]](graemlins/confused.gif)