Who has tested positive for an HHV-6 coinfection? Are the Lyme specialists experienced in treating them? How do you treat that?
Thanks!
Posted by stymielymie (Member # 10044) on :
need antivirals. llmd's sholud know of id doc
docdave
Posted by SForsgren (Member # 7686) on :
There are also some options like Researched Nutritionals Transfer Factor. They have one specific to HHV-6. Take a look.
Posted by Semi-Retired (Member # 7722) on :
I was highly positive and tried several transfer factors including the one Scott mentioned without benefit. However, the freeze dried garlic from Biopure seems to be doing something good, only been on it a week, but don't know if it's hitting the HHV6 or something else.
I'm a total Lyme treatment failure, conventional and alternative so I sense the garlic is lysing the viruses, just a hope/guess/prayer.
You can also go to the HHV6 Foundation website, lots of good information there: http://www.hhv-6foundation.org/ You will see a "treatment" section up top. Good luck,
Tim
Posted by grace1 (Member # 10347) on :
^ Yes, actually that is the doctor who tested me for HHV-6, and is offering to treat me for it, probably with Valcyte for 6 months. However, I read that it's pretty toxic. The patient info sheet says prominently that it causes cancer in laboratory animals.
So I was trying to see if there are less toxic alternatives. I'm guessing a fraction of Lyme patients have HHV-6 coinfection causing a lot of the fatigue symptoms. Wonder if any of the Lyme treatments inadvertently also help treat the HHV-6.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by stymielymie:
llmd's sholud know of id doc
docdave [/QB]
ID doc!!??? Posted by Semi-Retired (Member # 7722) on :
Freshly juiced garlic or freeze dried garlic from Biopure; I take 2 caps t.i.d after meals. It kills other stuff too.
Depending on your Lyme meds Valcyte may be worth a go, he's had a lot of success. You would know within ~6 weeks if it's going to work or not.
You can ask him about the carcenogenesis of it. Maybe the rats/mice were given super high doses as they do in all trials just to see what happens.
Possible cancer down the road or a gnarly CNS infection that aint going away untreated. Or, try garlic, it's amazing but not any. I believe in Dr. K's garlic product (Biopure).
Gigi has talked about this extensively. You can do a search for "garlic" and at the bottom enter her member number which is 259. Bonne Chance!
Posted by serendipity (Member # 8474) on :
I have used Takuna from Nutramedix to treat various virsues including those in the Herpes family.
I felt better after a few days on Takuna without any die off or herxheimer reaction. Wish the rest of treatment could be similar.
Posted by bettyg (Member # 6147) on :
I was highly positive and tried several transfer factors including the one Scott mentioned without benefit. However, the freeze dried garlic from Biopure seems to be doing something good, only been on it a week, but don't know if it's hitting the HHV6 or something else.
I'm a total Lyme treatment failure, conventional and alternative so I sense the garlic is lysing the viruses, just a hope/guess/prayer.
You can also go to the HHV6 Foundation website, lots of good information there: http://www.hhv-6foundation.org/ You will see a "treatment" section up top. Good luck,
Tim
Have you retested or followed the HHV-6 titers through your treatment?
Posted by Semi-Retired (Member # 7722) on :
[/QUOTE]Have you retested or followed the HHV-6 titers through your treatment? [/QB][/QUOTE]
Seeing my doc this week to be tested. I may try to convince him to Rx Valcyte depending on the results.
You asked for other treatments, Dr. K uses an "Ayurvedic herb cocktail of Indian Gooseberry, Chebulic and Beleric myrobalan" which is presumably sold at Biopure.
Other herbal products I've seen listed are Monolaurin and Olive Leaf Extract.
If you visit the "alternative" treatments section of the HHV6 Foundation they list Whey protein amoung other things. Good luck,
Tim
Posted by 5dana8 (Member # 7935) on :
up for more information
Thanks Dana
Posted by Semi-Retired (Member # 7722) on :
I know it's been a while. Per my previous post, the freeze dried garlic may have killed something but wasn't effective against whatever is causing my symptoms.
I just retested and my IgG HHV6 antibodies are 1:1,260, IgM was negative. According to knowledgeable sources the high IgG is most likely indicative of an active or reactivated infection.
So I'm going on Valcyte, consequences be damned. I think the original poster asked about other options and some CFS docs are also Rxing Famvir which is considered to be a Valcyte-light, less side effects and toxicity but also less effective.
Tim
Posted by grace1 (Member # 10347) on :
^ Hope you will check back in to let us know the results of the Valcyte.
Curious, did you ever test for the other EBV virus being studied in the Stanford clinical trial?
Dr. Montoya said that he has never treated anyone with valganciclovir who only tested positive for HHV-6 and not EBV. But he seems interested to know what would happen. Doing this would be like how he treated his first chronic fatigue patient who presented with EBV, HHV-6, (and CMV)... not really knowing what to expect, and adding more to the research knowledge. I am not quite ready to be such a human experiment.
What dosage and duration of Valcyte will you be using?
I tested positive to it also. My Lyme doctor thinks that if we can get the lyme under control my immune system will take care of the HHV6a by itself.
Kathy
Posted by 5dana8 (Member # 7935) on :
I tested positive to EBV 20 years ago when I first got sick with lyme. The tests results where very high enough & state health department called my doc to let him know.
Does anyone know the answer to the following question:
Do the tests for EBV show wheather EBV is still an active infection or just a marker for past exposure from the previous infection 20 years ago?
[ 13. February 2007, 01:17 AM: Message edited by: 5dana8 ]
Posted by Semi-Retired (Member # 7722) on :
Grace - My doctor will be applying the dosage he used in his published study. Like just about everyone else I've also tested high for EBV, but not (seemingly) high enough for it to be considered reactivated.
It's interesting he said that about the three virii because in his published study he is focusing on HHV6 and EBV but not CMV.
The study also indicates 5 of the subjects were "abnormally" high for one but not the other; so not sure how high is abnormally high. I'm sure he really doesn't know if either is a reactivation, he sees clinical improvement in symptoms and declining titers. He doesn't even know if he's hitting some unknown virus/virii at this point.
Dana - That is a good question, but if it's reactivated, how would that differ from primary? In theory you would have the same symptoms.
Maybe try to get retested to see where you're at? The reason I became interested in this avenue is cuz even though I had several positive bands on my WB nothing worked and I tried everything, coinfections included.
As someone told me, the missing link could be viral, not Lyme or bacterial related.
Tim
Posted by 5dana8 (Member # 7935) on :
wow! Tim fab link!!! Thanks so much
Hope the anti-viral does the trick for you & you can feel better soon.
Good luck with that hugs & healing Dana
Posted by grace1 (Member # 10347) on :
thanks for the link to the paper. interesting that it says that 2 of the 3 nonresponders did not have as high antibody titers to begin with.
the review of the literature in the beginning is quite interesting... referencing a lot of research that is probably considered fringe stuff... like HHV-6 and MS...
Posted by yourtroubl (Member # 11087) on :
Freshly juiced garlic or freeze dried garlic from Biopure; I take 2 caps t.i.d after meals. It kills other stuff too.
Ugggg. I just had to respond. I think that would kill me. However, the way I feel today that might not be a bad thing; lol.
Posted by lalalu (Member # 10854) on :
It is a procedure I did after my chelation therapy for metals. About 2 pints of blood is taken via IV, and run through ultraviolet light at certain frequencies, aimed to destroy the HHV6 virus. Then the blood is collected into a container, with nutrients or minerals added, and run back into your body I was also using frequencies to destroy Lyme. I was herxing during this period - I did 12 treatments.
I recently had an HHV6 test which came back negative, after testing positive in 2005.
Posted by stymielymie (Member # 10044) on :
hey tutu: don't knock all id docs my present lyme doc is infectious disease and is brillant. he is also trained in exotic diseases and travel medicine. he was trained in philly and i have continued his good training in lyme disease and coinfections.
he is extremely persistant ,and looks up and reads every article i bring him.
so there is at least one good id doc in the country. and they know more about viruses then anyone, since most of their practices are aids patients.
docdave Posted by pq (Member # 6886) on :
some links on the use of nucleoside analogues and/or fatty acids for lipid enveloped viruses.
IGG...indicative of past infection...not an active one.
IGM...indicates present or accute infection.
Most people test positive for IGG Epstein Barr...this does not mean one still has the infection.
Ultra-violet irradiation...think about this...exposing blood to DANGEROUS radiation that can potentially damage DNA INSIDE the blood cells.
There have been many articles written on the dangers of this practice, and none written in reputable journals on it's validity.
Be careful...if the sun's rays harm us, don't you think these UV rays can do the same?
I had friends try this (the Doctor was a scam artist...robbed Lyme patients blind...) and they got ZIP...oh yes, it cost them $350 a pop!
This new Anti-viral sounds interesting...if anyone has ACTIVE vs PAST infection, perhaps it will help, but the possible cancer connection is scary.
ID Docs...I agree with DD here...I have found some ID docs SOME to be open minded. After all, what are LLMD's? Most are smply Internists or Family Practitioners, with no advanced schooling in a specialty...at least ID docs have a more in- depth knowledge of Infectious Diseases...the problem is in their willingness to push the envelope.
Peace, Love and Wellness, JRW
Posted by Semi-Retired (Member # 7722) on :
Garlic is useless against HHV6 and probably also EBV. I emailed Steven Moore, herbalist, and he said herbals are not very effective against Virii in general.
Since HHV6 has no reliable test for active infection how can you know garlic kills it? The best way at present to determine if an agent is able to detroy HHV6 is the way Montoya did it. Declining titers and symptom improvement.
Rather than make a blanket statement about garlic you should cite specific studies at least showing garlic is effective in vitro against HHV6. There is none.
Posted by Semi-Retired (Member # 7722) on :
HHV6 is known to be neurotropic, UVBI will do nothing against it. I don't understand how people can KNOW they killed something when it's highly doubtful they tested pretreated then post treatment and found declining titers.
You don't hear much about these nonsense treatments against AIDS yet garlic and UVBI kills everything else, go figure.
Posted by Cate (Member # 8787) on :
to elaborate on semi-retired's post above, i have the very detailed version of Montoya's research, which was published in the Journal of Clinical Virology, 37 suppl 1 (2006), 533-538. it's more detailed than the link posted earlier here previously, and gives pre- and post-treatment titers of all 12 patients, in the "Focus" IFA format.
i don't know how to post a PDF and can't type in the entire table of results, but here are Montoya's ranges for "responders" and "nonresponders" to Valcyte for CFS.
"responders" had these levels pre-treatment:
HHV6 IgG, ranging from 1:320 to 1:2560 EBV IgG ranging from 1:640 to 1:10240 EBV EBNA Ab 1:10 to 1:640 EBV early ag 1:80 to 1:640
"responders" had these levels post-treatment:
HHV6 IgG, 160 to 2560 EBV IgG 160 to 5120 EBV EBNA Ab 0 to 320 EBV early ag 20 to 640
"non responders" had these levels pre-treatment:
HHV6 IgG, 40 to 2560 EBV IgG, 160 to 640 EBV EBNA Ab 40 to 160 EBV early ag, "ND" [non detectible? no data?] to 160
"non responders" had these levels post-treatment: HHV6 IgG, ND (all 3 of them) EBV IgG, ND to 320 EBV EBNA ab, ND to 80 EBV early ag, ND to 160
for those of us with LabCorb style indexes (a different system of measurement) on HHV6 and EBV, it is hard to figure out if we are likely to be responders or not.
[ 13. February 2007, 11:46 PM: Message edited by: Cate ]
Posted by grace1 (Member # 10347) on :
thank you very much cate.
interesting to see that the titers do go down in the nonresponders, to even lower levels than the responders, so it still seems to be hitting those viruses.
too bad there is not a better way to test for things so that one could just find out all the microbes in the body, instead of throwing darts blindly.
Posted by grace1 (Member # 10347) on :
any updates from people who were starting valgancyclovir treatment a few months ago? or people enrolled in the Stanford CFS study? or can they not talk about it...
Posted by WildCondor (Member # 434) on :
Regarding HHV-6 treatment, I did IV ganciclovir, oral valtrex, IV Hydrogen Peroxide, UVB blood photo-treatment, high doses of IV Vitamin C, IV echinacea, and auto immune vaccines created in Germany. NOTHING WORKED. The only thing that made the HHV-6 go back to dormant was antibiotic and co-infection treatment for Lyme/babesia/ehrlichiosis/bartonella.
Once you treat the underlying bacterial infection(s), the immune system can recover, and slam the virus titers back to normal. There were 2 products I took that did seem to help, IP-6 and ARA-6 larch extract.
Some docs will treat with valtrex, and transfer factor, things like that to boost the immune system, but in my opinion, the best antiviral "treatment" is to get rid of all the bacteria!
Please be careful of the many doctors who try to sell you on things like UV-B and hydrogen peroxide IVs...they are out to make $ and take you for a ride! Trust me, I was one of the many victims of the many "cures"
Posted by bpeck (Member # 3235) on :
So it's a titer count? Antibodies? IgM antibodies or IgG? or another subset? Barb
Posted by lalalu (Member # 10854) on :
UVBI helped me. Just sharing my experience, strength and hope.
Posted by Health (Member # 6034) on :
I would think that this virus would go into remission once the lyme and other coinfections
are taken care of. I read about these infections and they dont cause problems in healthy people, it is the people with lower immune systems.
I read in Dr B's guidlines that these viruses thare are normally dormant can come out in the very sick lyme patient because..
lyme has lowered the immune system so much. Once the lyme is better, and coinfections such as the babesia or bartonella and other tick infections,
the viruses should go into remission, if they dont, something is wrong, your immune system
should be going or getting better once these
tick infections are treated.
This is what I read. Unless the viral infection is causing severe problems, then you have to treat it.
This is what I thought, and read.
Trish
Posted by grace1 (Member # 10347) on :
hi wildcondor,
i've visited your web site many times especially when i could barely get out of bed for 1 hour per day. thank you for writing your story.
question... how long did you take the anti-virals for?
some people here don't test positive for lyme or the other coinfections, nor remember a tick bite nor rash... while testing high for these herpes family viruses... so in those cases, with all the highly successful stories of the CFS patients who were treated with valgancyclovir for 6 months, it may be worth looking into.
or, some people here might know they got lyme, but have tried every treatment and still not gotten better... so it might be worth it to investigate the viruses.
every person might end up with a different story. i met one of the people who got well on valgancyclovir... from wheelchair to working full-time in a few months or less.
quote:Originally posted by WildCondor: Regarding HHV-6 treatment, I did IV ganciclovir, oral valtrex, IV Hydrogen Peroxide, UVB blood photo-treatment, high doses of IV Vitamin C, IV echinacea, and auto immune vaccines created in Germany. NOTHING WORKED. The only thing that made the HHV-6 go back to dormant was antibiotic and co-infection treatment for Lyme/babesia/ehrlichiosis/bartonella.
Once you treat the underlying bacterial infection(s), the immune system can recover, and slam the virus titers back to normal. There were 2 products I took that did seem to help, IP-6 and ARA-6 larch extract.
Some docs will treat with valtrex, and transfer factor, things like that to boost the immune system, but in my opinion, the best antiviral "treatment" is to get rid of all the bacteria!
Please be careful of the many doctors who try to sell you on things like UV-B and hydrogen peroxide IVs...they are out to make $ and take you for a ride! Trust me, I was one of the many victims of the many "cures"
it is interesting that some of the logic used is the same as what the lyme docs say. ie. high IgG is a sign of chronic infection but most clinicians don't know that. plus the use of an anti-viral for a relatively long period of time.
thus, i am hopeful, if this study does in fact show the valcyte works for the CFS subset, and make the medical community reconsider how chronic infections are tested.
quote:Originally posted by bpeck: So it's a titer count? Antibodies? IgM antibodies or IgG? or another subset? Barb
Posted by savebabe (Member # 9847) on :
Check this out about glutathione and how it helps guard against viral infections.
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I just had to respond. I think that would kill me. However, the way I feel today that might not be a bad thing; lol.
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