I am barely herxing when I take my lyme meds, although when I take Flagyl, I do get very tired.
I think my remaining symptoms of fatigue and tender spots may be just the HHV6 and EBV. So, maybe time to stop abx and just take antivirals?? Thoughts?
Posts: 33 | From VA | Registered: Feb 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Get tested at Focus Diagnostics lab. See www.hhv-6foundation.org for further info. Both the website has good info, as does the patient's forum. I've posted a lot in the patient's forum about how to get tested at Focus Diagnostics, and also about EBV.
You might also want to get tested for enterovirus. That should be done at ARUP lab. See: www.enterovirusfoundation.org for more info.
I have improved a lot taking valcyte (for HHV-6, EBV), now on acyclovir to maintain that improvement and on oxymatrine for the enterovirus.
I've had the best 2 months in the last 5 1/2 years. I'm happy to see some good improvements.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Don't stop taking your lyme meds until the herxes are all gone. Then, take meds at least 2 more months.
If flagyl makes you very tired, that is the herx. You have to take flagyl until that goes away. That's when you know there are no more cyst forms of lyme to be killed.
Be patient and you will have the victory. I got it. But I had to take meds for 5 months after all symptoms were gone. It took a lot of patience!
4 years since I finished treatment, and still symtom-free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Lymeorsomething
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Why not run anti-virals and abx together? I have. Some docs will do this. I have a hard time believing common viruses like EBV and HHV-6 would take over 2 years to knock out unless there was an x factor...and that x factor may very well be lyme and/or co's...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I am taking both together and have been for many months. I feel like what is left is simply fatigue and that comes and goes without any difference regarding the antibiotics (I pulse and one week take none).
I don't know if what I feel is truly a herx (when I do take the abx). I have a racing heartbeat and nausea, which are also listed as side effects.
Posts: 33 | From VA | Registered: Feb 2009
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Lymeorsomething
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Whome, have you had a recent lyme western blot and/or CD-57?
Fatigue has always been my main issue though I continually test igm positive through Igenex, especially on bands 31 and 34...band 31 confirmation +
So you may still have active lyme even with that one outstanding symptom...not to say viral aspects don't complicate the picture...they most likely do...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I have high EBV and HHV6 titers, in addition to Lyme. I'm currently on abx for the Lyme, but given my prolonged fatigue, my LLMD has recently added an herbal antiviral--monolaurin.
I've had no problem taking them together.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Lymeorsomething
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anna, let me know how the monolaurin works...i've been meaning to try that...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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How long have you been using the Valcyte. I am using Valtrex for about 4 months now. I don't see anymajor differences. I tested high for IGG HHV6 and EBV. Does that mean that' spast virus?
Do you still have Babs? I am still trying to knock that down.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Question-if you have these virus' know to be
associated with breakouts/rashes, when would that
or those symptoms occur in treatment?
Is it possible that in or after treatment the
body's immune system will get that fought down as
well? Or does the treatment just exacerbate the symptoms?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Lymeorsomething
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posted
Hides, Valtrex does not hit HHV6 supposedly. It will work on the EBV somewhat.
Valcyte can be tough on the liver...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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timaca
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posted
Hides~ I was on valcyte for 9 months. I am now on acyclovir (active ingredient in valtrex) to keep the viruses knocked down. I never had Babs.
Pinelady~ At first the treatment can exacerbate symptoms. I've (and others) have found that between 4-5 months things get better...
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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