posted
i have lyme but also tested positive for the HHV-6 virus. i read that dr. burrascano reccomends testing for viruses but i couldnt find anywhere about what he recs to treat themif you do find them. would they get treated before the lyme?
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
What are your HHV-6 titres? Which tests were positive?
I just tested a very, very high positive IgG, and am seeing my LLMD tomorrow to discuss the option of Valcyte. I have already treated with abx (oral and IM) for three months with no improvement or herx.
If you can respond with some more info I'll return tomorrow and let you know what my doc says.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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If I had to do it all over again, I'd treat the Lyme/cos first and foremost, and I'd look into yeast and parasite treatment as well.
And I'd have investigated naturopathic remedies in conjunction with LLMD treatments. And I'd have begun a GF diet. Sure wish I knew then what I know now.
5v, 3 months of treatment for TBD is not a long time. Valcyte is a very potent antiviral. I'd think just as long and hard about that as I would about continuing to treat TBD.
We treated high EBV with valtrex and through the roof high HHV6 with valcyte. This was before LD treatment.
Started very sick, ended very sick. HHV6 level coming down somewhat from the valcyte made little difference.
But HHV6 levels dropped dramatically with Lyme/co treatment. EBV still a bit high, but was being contained with valtrex and now with homeopathics.
My 2 cents FWIW.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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However, there are a couple things to consider in my case.
1) I'm young, 19, and am currently too sick to do any schooling or anything productive with my life.
2) I haven't had any reaction to the 5 different antibiotics I've been on. No herx, no improvement, no change in symptoms.
3) I'm going to discuss this with my LLMD and see if he has patients doing concurrent Valcyte and abx treatment.
4) This is LymeNet. There are many people on other forums (Phoenix Rising springs to mind) who have treated for TBIs with little to no success and then have done well on antivirals.
With my symptoms (which all fall into the category of "CFS" as well as Lyme), it's really a crapshoot whether to treat TBIs or viral infections. Before my Lyme diagnosis, I saw a very astute and well-regarded CFS doc who was ready to start me on Valcyte. (Or even more potent drugs such as Rituximab, more info is over at Phoenix Rising.)
I'm thankful for the other doctor who diagnosed my Lyme, as now I have a fuller picture, but I'm not going to sit here and wither away when I could be treating with antibiotics and antivirals at the same time.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
And Katrina, I don't mean to hijack your thread.
Hopefully some of the info in my post is helpful to you, and again, I'll report back tomorrow.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
I was on Valtrex for 6mo due to high EBV and HHV-6 titers. No abx at the time, as the dr did not beileve it was Lyme(sigh...)
I do beleive the Valtrex alone helped me at that time. I felt horrible, and within about a month felt considerably better. Valcyte IS a very otent drug with many side effects that don't seem worth it to *me*...perhaps start with Valtrex and see where that takes you? Just remember, antivirals are immune-suppresant drugs. This can be good AND bad. You need your immune system to function properly to help you heal and get well. Supressing it, along with using antibiotics....that is alot.
5v...you seem a wee bit irritable in your post...noone here is telling you to sit around and whither away...you asked for advice and someone gave it to you. There are hundreds of forums out there and depending on what forum you go to, you will find all sorts of people claiming one thing works for them and other things don't. That is the nature of this disease, and what makes it so hard to treat.
The most important thing YOU can do is have an open mind and resect all people as doing what is best for them in that monent...and you will get the same in return.
Good luck to you...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Sorry, I didn't think I sounded irritated in my post. I don't think I was when I wrote it either. Well, no more irritated than most of us are every day, considering how sick we are and the substandard level of care most have us have received in the past.
The purpose of my post was to make my logic and reasoning clear.
I had said that I was only discussing the "option of Valcyte".
I just got back from my appointment and right now we're going to start treating for Babesia and see what happens. It is my doctor's opinion that my extreme fatigue is most likely being caused by the Babesia. If treating with Babesia meds does nothing, the next thing we'll look to is the HHV-6 and possibly mycoplasma. He's had good experiences with transfer factor and Valcyte, and I would try the former before considering the latter.
I hope this is of some help to anyone who may be reading. The most important thing I took away from the appointment is that the extreme fatigue that I experience is most likely a Babesia symptom, and if I just had Lyme or Lyme and Bartonella, my symptoms would present differently.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My titers for HHV6 and EBV were high, but my doctor treated that with Guna homeopathics, lauricidin, and olive leaf. When the titers came down, I felt even better. Doxy and lauricidin brought down myco pneu, too. It really made a difference when I plateaued after Lyme treatment. I couldn't get over the hump until my doc treated me with the above.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Ah...ok. It is hard to interpret *intent* over the internet. Sounds like you have a good plan with your Doc. I did Valtrex with HHV-6...you may want to read a little about it, as it has fewer side effects than Valcyte. Also, Myco is often treated the same as Lyme so if you go on doxy, you may be killing to birds with one stone. Myco takes a LOOOOONG time to get rid of...like, a year, potentially. Just so you know. I am still trying to get rid of it...and that can make you feel wiped out too...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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chiquita incognita
Unregistered
posted
I am not a doctor and can't make any recommendations, but here is something you might ask your doctor about.
If it was *me* Myself, I would be treating everything else first before tackling the lyme.
I think it's easier to get well after other things are taken care of first.
And herx's shouldn't be quite as hard on us if our body is not compromised by other co-infections.
If treated first, I should *think* that lyme treatment should go more smoothly.
I could be wrong of course. I am just thinking out loud.
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posted
I didn't think 5v was irritable at all. And if he or she was, well who among us hasn't been? Certainly not me
5v, as a mom of a girl around your age who's been dealing with all this for several years, I can surely appreciate where you're coming from and I admire your tenacity and determination to achieve wellness. And I applaud you and other young people who take it upon themselves to post here.
I hope that you have a parent, aunt, etc. who is helping you with this whole thing. It is very overwhelming to say the least.
I totally get your frustration and understand the CFS/Lyme issues--having been there, done that.
Katrina, this is your post and as what frequently happens your original post has gone "tangent" I am sorry for that! ("gone tangent"--new word! I love new words--another tangent, sorry)
I hope that you have gained some insight from everyone's replies. What are your thoughts on all this?
Raw vegan, Valtrex does NOT treat HHV6. Check out Timaca's links.
Timaca is right--test for all pathogens and treat those that appear to be the most problematic.
And Cheryl's point should be noted. Lauricidin and olive leaf extract are potent antivirals (as is monolaurin). IMO these can be an excellent alternative to Valtrex.
Chiquita, I think one of the problems most of us here have is that we did not know about "everything else"
If only we knew yes, I have babesia, gluten intolerance, high EBV, etc. etc. of course that would have made things easier.
But the vast majority of us have gone through an Alice in Wonderland experience that landed us into this strange world of Lyme Disease and coinfections.
And so here we are with a multitude of issues and symptoms trying to tease out what are the babesia symptoms vs. bartonella symptoms vs. lyme symptoms vs. EBV symptoms vs. HHV6 symptoms etc.
I sure wish it was easier for us all.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
I will read the link for sure, as my titers are STIL high after 6mo of treatment...and several years/abx later. I was put on Valtrex by my Dr bc of my high EBV and HHV-6 titers...perhaps the Valtrex was ony for the EBV? SHe was not a LLMD and did not believe in Lyme without a Pos. test so she was treating me for CFS...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
"Coinfection HCMV and HHV-6 CFS requires valganciclovir with valacyclovir."
From the second paragraph.
I've seen anecdotal evidence that Valtrex can help surpress HHV-6, and maybe if it's taking card of other viruses, your immune system is "freed up" to kill HHV-6 on its own. But everything I've read indicates that Valtrex does not kill HHV-6 by itself.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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It is hard to interpret *intent* over the internet. Sounds like you have a good plan with your Doc. I did Valtrex with HHV-6...you may want to read a little about it, as it has fewer side effects than Valcyte. Also, Myco is often treated the same as Lyme so if you go on doxy, you may be killing to birds with one stone. Myco takes a LOOOOONG time to get rid of...like, a year, potentially. Just so you know. I am still trying to get rid of it...and that can make you feel wiped out too...
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