ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Just checking in with those on Valcyte to compare notes. I am on low dose because I am drug sensitive, but I have noticed the fatigue, gut and my brain fog are better. I am off antibiotics at the moment, but also take Fluconazole for yeast. On the down size, I have noticed burning sensations in my feet and hands, obviously a nerve thing going on.
Just comparin'
ArtistDi
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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If you go to immunesupport.com and do a search on their board they have a ton of valcyte users reporting on their experiences including some of those in the Montoya study going on.
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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timaca
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posted
Hi ArtistDi~
I've finished week 12 on the valcyte. I'm not on antibiotics at the moment...went off minocycline at 5 1/2 weeks of taking the valcyte.
I had labs drawn on Monday for lyme and viruses. Those results should be interesting. I'll post back with those later.
I've had 5 "better" days since taking the Valcyte (today being one of those days). I'd like to see lots more "better" days, and eventually some "well" days!
A friend of mine started getting significantly better after being on the valcyte for 16 weeks. Hopefully, that will happen to me too.
What week are you on? What is your dose?
Oh, just for the record, I was at the LDA and ILADS conference. I talked with 2 prominent LLMDs that are finding high viral titres in their lyme patients. I also spoke with a doctor from Germany who has found that 40% of his lyme patients have high titres for HHV-6. Many are also high for EBV and CMV.
I also discussed in depth with these prominent LLMDs symptoms. There is NO WAY to tell the difference between a lyme symptom and a viral symptom. Another way of saying it: All symptoms that you may think of as lyme can be a symptom which is caused by a virus.
If you think you have lyme, get checked for viruses too. Viruses are much more prevalent (we've all been exposed to them)...thus if you are sick, the chances that it is from a virus is actually higher than from lyme.
Of course, you could be ill with both (like I think I am).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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ArtistDi
Frequent Contributor (1K+ posts)
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posted
Hey Timica,
Thanks for your response. I am on a very, very small dose, and yet, my body always seems to respond better to smaller doses. I have been at this for only a couple of weeks, but I have noticed the fatigue is better.
I had relapsed in July when I had a flu, which I haven't had in seven years, when I first became ill. I knew that something had to be activated, and my HHV-6 titer was extremely high, even if it was IgG. I didn't get tested for viruses until the end of August, and by then, I was extremely fatigued, despite being on the IV doxy. IV doxy for 2 years or more, which helped a lot in getting me out of bed.
I also believe I am a "soup," with lyme, and other infections besides the viruses.
I should say I am also on IVIG, and that by far, has been helping me a lot more with the gut, head and fatigue issues. I have been on it since July, and I only do 5 grams every other week. For someone my weight, it would normally be 20 grams per month, but due to the drug immune injury I had incurred some time ago, drugs are difficult for my body to process.
All the same, my doctors feel my color, my skin, hair and mental apptitude are better. I think the gamma is helping me, along with diet, the antiviral, suppplements, rest, etc.
Di
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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minoucat
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Member # 5175
posted
Valtrex (pretty much the same as valcyte) really helped the hubby-- reduced his brain fog, reduced his sweats (now all gone after completing babs tx), greatly reduced his pain levels, increased his energy.
At the time he started on Valtrex he had made no other changes in meds or diet, so we're sure it was the valtrex that did it.
He started off taking olive leaf extract (Seagate brand), which definitely helped. Then added valtrex which helped more.
He had very high titers in a number of of viruses.
Despite being on valtrex for long periods of time he still has HHV viral outbreaks on his hip, so although the valtrex and olive leaf have helped greatly, they haven't done the job completely.
He did fairly extensive heavy metals treatment while doing a lot of the viral stuff and sauna as well.
It is my understanding that the azoles in general can cause peripheral neuropathy -- metronidazole certainly did for the hubby. Just something to be aware of.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
timaca
Frequent Contributor (1K+ posts)
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posted
Minocat~ Valtrex is not effective against HHV-6. Valcyte is effective against HHV-6.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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minoucat
Frequent Contributor (1K+ posts)
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posted
Hi Timaca. Sorry, typo -- he has HSV, not HHV (as far as we know, although some tests were equivocal) As well as CMV, EBV, and other stuff I'd have to look up.
But thanks for the reminder -- it's always good to be recall that there are other drugs currently in the pipeline (like valcyte, which did prove effective against HHV6 in vitro) and other ones coming up which will address HHV6 more aggressively. It's easy to get into a treatment rut, I find, once one is over the initial crisis.
The LLMD chose Valtrex as the best med (in terms of tolerance) in combination with the other drugs the hubby is on. It's limitations are why he was so insistent that we add the olive leaf extract.
My understanding is that, although Valtrex has not proved out well in vitro for HHV6, in vivo studies indicate that "while valacyclovir (Valtrex) may be less potent, it is capable of preventing reactivation of HHV-6 (and CMV)" It achieves a higher concentration in the blood than does acyclovir.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Just wanted to repost this research:
In one recent study by Dr. Chia, an enterovirus was found in the stomach tissue of 82% of CF patients, but only in 7% of healthy controls. The enteroviruses were identified by tissue biopsy and did not show up in bloodwork.
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