I'm wondering how many of us have viral issues (EBV, HHV6,etc) and are treating those in conjunction (or otherwise) with TBD?
Anyone done a naturopathic antiviral treatment that worked? I've heard garlic and monolaurin may be effective, but don't know anything about doses, etc.
Posted by ByronSBell 2007 (Member # 11496) on :
I actually tested positive for west nile virus before I was diagnosed with lyme disease but, one of the docs said he has seen hundreds of people test positive for it but not have it. Some people get sick from it, some people dont...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by CD57: I'm wondering how many of us have viral issues (EBV, HHV6,etc)
Lots.
***and are treating those in conjunction (or otherwise) with TBD?***
not as many
Posted by TerryK (Member # 8552) on :
I think viruses are very much involved in lyme and chronic illness in general. When the immune system is depressed, they have opportunity...
I have very high IgG HHV6 titers which apparently means that I may have an active infection.
I tried monolaurin for many months prior to having my viruses tested and while monolaurin is supposesd to work on HHV6, I still had very high IgG titers. As I recall 11+ times above normal. It's always possible that monolaurin took an IgM infection to IgG. I did not have lab tests prior to trying monolaurin so I'm sorry to say that I don't know what the effect was. Monolaurin does help with H. Pylori and I do think it was effective for that while I was taking it. My husband and I seem to be passing the infection between us so I still have the infection.
According to the manufacturer's product representative, take 6 tablets, first thing in the morning on an empty stomach in order to get the best results. She mentioned that if you don't see a positive difference after following these instructions for a month then you probably don't have a problem that monolaurin will help.
Dr. Jacob Teitelbaum's Treatment Protocol for Fibromyalgia & Chronic Fatigue Syndrome http://www.immunesupport.com/library/showarticle.cfm/ID/3346 "Take 9 capsules once a day on an empty stomach for 1 week, followed by 6 capsules once a day for 20 days. Take lysine 1500 mg twice a day while on Monolaurin."
My sisters lyme doc has her on lauricidin while she is in treatment. Different brand of a similar product.
When I first started lyme treatment I had a lot of shingles symptoms and other viral symptoms. Apparently it is not unusual to activate viruses when treating lyme.
I use rife with muscle testing to augment lyme treatment and I am always needing virus frequencies. Before I started treatment with an LLMD, I also needed lyme and other similar frequencies but now it is almost all viral frequencies. I assume the medications I'm taking for lyme are the reason that I don't need lyme frequencies at this time.
My herbalist/muscle tester has found that I need to uncloak some of my viruses before they can be killed. She said they hide from the immune system behind cholesterol, sugars and fats. She has me on one capsule of Nopal, Rose Hips, Red Yeast Rice (all nature's Sunshine) every other day for 4 doses, then rife for viruses then repeat for a total of 9 times. This is specifically what *my* body needs via muscle testing to get rid of a number of what she called stealth viruses. I have no idea if this would work for anyone else. I've been seeing this person for many years and she has proven to be very accurate for me.
None of this is to be taken as a treatment recommendation. Just sharing what I am doing at the moment.
Terry
Posted by MommaK (Member # 10376) on :
Hi!
My daughter was on valtrex for about 3 months due to rising EBV and very high HHV-6 titers. This was after short course of treatment for babesia. Have not actually targeted lyme yet.
She was better for a few weeks, then symptoms were worse. New virus tests showed increased EBV, HHV-6 and now high CMV titers.
She started valcyte 3 weeks ago. Guess it's too early to tell much. Also back on malerone.
She has had many virus titers done over the time prior to suspected lyme onset, and also after. It's interesting to watch, they just continue to rise! Hope this scary drug will help knock them out.
Our llmd shared a study on valcyte being tried on these viruses. Very interesting parallels to lyme.
Good luck!
MommaK
Posted by valbeth (Member # 12715) on :
I test positive for EBV, haven't really tested for the rest. About 6-7 years ago when the s... really hit the fan I took Famvir, for I don't remeber, aoout a year? It really, really helped, then stopped. The bloody things probably mutated. I even tried going back on it about a year later, but no help. It was nice while it lasted though...
Posted by hanginginthere (Member # 11685) on :
I, too, have a high HHV6 level (doctor calls it 'activated'). He wants me to take valganciclovir (per a Staford Univ. study with CFS patients)...but when I read the risks/side effects, Yikes! I'm just not sure. Posted by CD57 (Member # 11749) on :
Yep -- I did the same thing -- balked at the Stanford study drug, Valcyte. It's scary stuff. But they are having good success with it!
Monolaurin may be worth a shot though.
Posted by timaca (Member # 6911) on :
I do have high HHV-6 titres (IgG) and EBV (and CMV too).
I saw Dr. Montoya at Stanford medical center, the ID doctor that authored the study that hangingthere mentioned. He put me on Valcyte, which I started a week ago.
I believe I did (and maybe even still do) have lyme disease. I believe the lyme lowered my immune function allowing the viruses to grow in me.
The symptoms for lyme disease, and chronic viral infections are the same!! I honestly think that everyone that has lyme disease needs to also get tested for these viruses. Focus Diagnostics in CA would be a good choice, for then you can compare your results to what Dr. Montoya considers high.
Some very good info on HHV-6 viruses (as well as EBV) can be found at www.hhv-6foundation.org Click on "testing" as well as the other links.
I am currently on minocycline for lyme disease and valcyte for the viruses. Once the valcyte has been onboard for 4-6 weeks, I plan on dropping the mino.
The reason behind this being that if I keep both medications on board, and get well, then stop both medications and relapse we won't know what really got me well, or which medication to put me back on.
Some comments on the previous posts: Valtrex is not effective against HHV-6; only Valcyte is.
MommaK~ That is awesome that your LLMD shared a study on valcyte. Was it Dr. Montoya's out of Stanford?
Hanginginthere~ I've not had any side effects to speak of with the valcyte. It did feel like a truck hit me 4 hours after the first dose, but I'm OK now. It has taken me down a notch though. It is also quite an expensive drug, and it requires weekly blood draws for the first 4 weeks, then every other week up to 6 months. So, that can get expensive too.
Timaca
Posted by stymielymie (Member # 10044) on :
i hav a post several days ago and in search about this subject.
i am pretty certain that 90% of all lymies should be on antivirals antiyeasts antifungals antiubiotics antimalaria
i have been tauting this for years i started taking acyclovir 5 years ago and have not had any viral problems this last remission ,since may has been due to vfend, acyclovir,plaquenil, mepron, doxy, zithro. no cyst buster. heavy dosed for 10 weeks and it cleared up my immediate crisis.
played tennis today, first time in over a year.
so do a search on vfend,acylovir and stymielymie
i know bettyg agrees with me ,at least about the systemic yeast and fungal infections.
docdave
Posted by tailz (Member # 10014) on :
I was tested for EBV several years ago, and the doctor said I was in the recuperating phase of it - whatever that means.
I asked my current LLMD to test me for West Nile virus, and he balked at the idea saying, "How many people do you know with West Nile?"
I don't agree with him though, yet he wanted to run an HIV on me.
My attitude is anybody and everybody can become infected with any and every virus known to mankind.
If I'm not gay and they are willing to test me for HIV, then I shouldn't have to live along the Nile to have them consider West Nile either.
Posted by bettyg (Member # 6147) on :
up as a reminder to read Timaca's links on HHV-6 tomorrow... Posted by stymielymie (Member # 10044) on :
timica;
viri work in a didn't mode than bacteria. bacteria work in the foreground. you can get these anytime,anyplace.
viri (viruses) are already in your system. you get herpes simplex when your mother kisses you as a baby, ebv when get chicken pox or exposure. most herpes are in peoples system and there are already antibodies for these viri.
thats why everbody tests positive.
the important thing is that viri stay in the nerve endings and hibernate there ,until the opportunity appears for them.
they are activated by illness ie cold sores. decrease immune system ie ebv, shingles and mainly stress on the body either physical or emotional
stress is a major factor in producing a healthly body.
just remember viri are opportunistic and and are already in your body. you do not get an infection of ebv, you get an outbreak.
primary herpes infections are dangerous and deadly as an adult. it does occur but is very rare. very high fever 104-5 extreme sickness and dehydration for 10-14 days.
most infections come before 6-7 you get a fever ,treat as a cold and then you've got the ab and the virus in your system.
docdave
Posted by timaca (Member # 6911) on :
docdave~ Yes, everyone has been exposed to these viruses....so everyone will have an IgG titre of 1:20 or 1:40. BUT, when someone has a titre of 1:5120 (like I do to the EBV VCA IgG or 1:640 to HHV-6 IgG); then one can suspect (but not prove)that active infection is going on. That is the theory that Dr. Montoya at Stanford used when he noticed that his CFS patients all had above "normal" titres to EBV and HHV-6 for someone their age.
To answer a question here that someone posted to me privately...so all can learn. It was Dr. Montoya at Stanford that said the symptoms between lyme and chronic viral infections are similar. I ran through most of my symptoms, including severe joint point in a large joint that is there for 3 days and vanishes, and he said that viruses can do that. I'm not sure you can find info about that online, but here is a post from a neurologist at Clevelend Clinic that disucsses neurological aspects of EBV:
I also asked my LLMD about the similarities of lyme and viral infections symptoms and he said that it would make sense that they are the same since cytokine cascades happen in both (don't ask me to explain that...don't know).
In my case, LOTS of antibiotics (including IV) did improve my condition from non-functional to somewhat functional, but I am no where near well. I think that's because it helped with the lyme bacteria. Perhaps I'm still sick due to the viruses. Time and treatment will tell.
Timaca
Posted by klutzo (Member # 5701) on :
Doc Dave, What is the difference between antiyeasts and antifunguals? I thought yeast was a type of fungus, and am now confused. Thanks in advance for explaining.....
- - - - - - - - - -- - - - - - - - -- - - - Re: testing My holistic doc muscle tested me for viruses, and FWIW....I was positive for HHV6, CMV, Coxsackie B3, and "tick virus".
My conventional doc ran an EBV titer, which showed previous exposure (I had mono as a teen) but no reactivation.
Three types of holistic treatments for viruses failed to change how I felt, though I was told I was virus free after the last one of them. I did Standard Process supplements, then NAET, and lastly I used MHA vibrational vials. As far as I'm concerned, words mean zilch...if I do not feel better, then I am not well.
Klutzo
Posted by Geneal (Member # 10375) on :
I have CMV titers so high the lab cannot accurately count them.
This is in addition to my high EBV and Lyme and co-infections.
I have been on valcyte as per LLMD for the last 6 weeks.
That is for the CMV.
Hugs,
Geneal
Posted by stymielymie (Member # 10044) on :
no they are not the same diflucan only kills yeast vfend kills yeast and fungi interesting point below that most ab are made from fungi ie penicillin is fungi from mold spores on bread. valley fever killed people from mold fungi not yeast. so all yeast are fungi , but yeast is only one type of fungi. mushrooms are also fungi. mold spores are fungi.
dave, thx for posting that yeast link; it was interesting and user-friendly! Posted by CaliforniaLyme (Member # 7136) on :
Don't forget the TBE family viruses- flavidirae- Powassan is in the US and SLEV and others- takes 15 minutes of tick attachment to transmit PV- also the "Deer Tick Virus" is family flavidirae- In Russia they are very aware of Lyme/TBE as coinfections. Some antibiotics activate TBE viruses and some are neutral. "Colorado Tick Fever" is actually a virus btw. Personally I think the following is the scariest abstract ever written- ********************************************
1: Zh Nevropatol Psikhiatr Im S S Korsakova 1983;83(8):1173-9
Structure of progressive forms of tick-borne encephalitis.
Umanekii KG, Dekonenko EP.
On the basis of long-term follow up (from 2 to 22 years) of 175 patients with various syndromes of progressive forms of tick-borne encephalitis (TBE), evaluation criteria of TBE progression are systematized.
Two basic forms of disease progression are identified: amyotrophic and hyperkinetic, each of them breaking down into a series of leading syndromes.
Important for characterizing progressive forms of tick-borne encephalitis (PFTBE) are the time when the disease began to progress and the pattern of progression as well as its stage and severity. PFTBE are correlated with the acute period syndromes.
In long-term follow-up, 68% of patients with PFTBE display transformation of clinical forms of the disease, with
the formation of the lateral amyotrophic sclerosis syndrome
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