SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I have heard one doctor suggest that Valcyte causes significant hormone disruptions as a side-effect. Has anyone here using Valcyte had any problems with hormones being impacted? What other side effects have been observed with Valcyte?
For those taking it here, did it help?
Thanks, Scott
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Scott.
I've been on valcyte for almost 6 months now at 900mg a day for CMV, EBV and HHV-6.
Don't think it has affected my hormones at all.
Not much is different in that area except the things I had going on
Prior to valcyte. (Woman issues )
I am not sure if it makes me feel any better, or if I am back on doxy
Hitting Lyme with flagyl this time.
I really don't care to take this medicine although I know
People who have been on it for years at 450mg a day to control herpes (mouth)
Without any notable side effects.
I guess if my LLMD draws titers for CMV, EBV and HHV-6 at the end of my 6-8 month
Expected course, I will see if that has helped me at all.
However, on valcyte you need weekly CBC's and CMV for the first 6 weeks.
Then twice a month for about 2 months, then monthly after that.
That in itself is kind of a pain in the behind.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
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posted
Sorry I meant weekly CBC's and CMT's.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
scott-
have you considered bovine colostrum?
check this out..
i have no experience w valtrex, valcyte, or this product. but id rather put this in first and see what happens then possibly further compromise my immune system.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I have looked at colostrum and transfer factors. I think Researched Nutritionals Transfer Factors may be a good way to go on this, but just looking at all the options. Thanks Derek
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
no problem, let me know what you decide.
i should have mine back soon and if the titers are o/o wack, im going to try to use some colostrum.
i already take 50 mg a day, so i guess id up it to 100-200?
anyone have colostrum dosage ideas?
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
The colostrum is the stuff that comes out before the breastmilk ... so the newborn (any species) gets the colostrom when they first start breastfeeding. I knew what it was. But I didn't know what it specifically targeted.
I was taking it because of its benefits to the immune system. I felt better on it, but I still eventually declined ... it wasn't enough on its own, of course.
But it's interesting that it might help with viruses.
It's funny because I'm finding out that many things I took before treatment are recommended ... most of the products are on Dr. B's list of supplements, but I also took things like astragalus .. it's funny how I gravitated to what I needed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Many on Lymenet have tries Colostrum and Transfer Factors in the past. No success...this was YEARS ago. Just a FYI so you don't waste your money.
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I disagree with the generic statement that no one benefits from Transfer Factor. Researched Nutritionals has some excellent transfer factor products that have been helpful for many. I have seen them used a good bit by doctors and Dr. B. in fact endorses the RN products, including one of their Transfer Factor products I believe.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
everyone is different.
who tried it for what when?
i wouldnt write anything off so quickly...
but, if it doesnt work, it doesnt work.
and if it does work...well, you know the rest.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Immune support.com has many people over there doing valcyte. Do a search and you will see many threads on it. There are a variety of experiences.
Some have had white blood cells drop dramatically and had to stop the treatment until they went back up. That is one possible side effect. valcyte seems to be more for HHV6.
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Scott~ I am about 5 months into a 6 month course of valcyte and it is helping. I felt this good after 6 1/2 months of IV rocephin (I relapsed when I stopped). HBOT also improved my health and I also relapsed when I stopped. Hopefully, I will just continue to improve on the valcyte and NOT relapse!
My understanding is that after a course of valcyte, people are then put on valtrex to prevent relapse. I'll know more after I see the doctor on Friday.
I have had no known problems with the valcyte, hormone or otherwise.
What has improved significantly in me is my "sick feeling". I felt like I had the flu 24/7. That went away. I also have more energy. I still have lots of symptoms, but those are supposed to take a year to resolve.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Timaca-
do you think the medication is supressing your symptoms or is it actually attacking the root cause of them?
i only ask because i like you have done the iv, hbot, etc, only to relapse (not as bad little improvment but you get the idea) once stopped.
do you feel its just another symptom masking med or that it actually is getting to the cause?
that "sick" feeling is terrible.
im glad that its gone 4 now.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Dr B...Dr B....
Three of my Lyme Buddies and myself were patients of Dr. B...we all tried Transfer Factor...zilch. If any of this stuff had proven studies that supported it's efficacy, EVERY DOCTOR would know about it and use the treatments.
(We also tried many other alternative treatments from Dr. B.)
Same results. We are still all very sick. One of my friends was out on IV for over TWO YEARS total. Not better. Much poorer.
Dr. B's paper is now three years old...enough time for many of treatments to be verified...or not.
Dr. B did nothing for us except charge $750 for the first visit, and order many, many tests that proved (later on) to be useless. He now is associated (not in Practice) with a Dr. Y from NYU who DOES NOT TAKE INSURANCE and charges $500 for the first visit and has a panel of tests that one needs, in his opinion that costs THOUSANDS. He touts IVIGG..VERY expensive...has not worked for anyone I know.
My MS Dr., a top research PHD and MD, head of research at Cornel Presb./NY Hospital told me IVIGG is useless for MS like symptoms...and no one has shown it works for Lyme either.
You should ask yourself why he really quit his practice if he was doing so well by his patients.
Note: I am NOT saying he did not help anyone. I am not saying he was not a good Doctor. Of course he was. BUT...so are other LLMD's at a much reduced cost. Patients that went to Dr. B and had such "miraculous" results were, in general, going to lousy, non LLMD's in the first place.
I have been to all the best in the NE...and Dr. C, President of ILADS, charged me way less for my first visit, and would call me from his car's cellphone (no charge) when I needed to talk. A real good guy.
I myself believe that the possibility of a viral companent might just prove to be the missing link for Chronic Lyme patients. Time will tell.
Be well, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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When you had your viral titers drawn, did you use Quest or LabCorp? My LLMD tested me for EBV & they came back sky high (Labcorp). Just wondering what lab u used.
I'd like to use the Focus lab Timaca mentioned, but I'm sure it's pretty expensive. Trying to use Labcorp since Insurance covers it.
TIA for any info SG
Posts: 269 | From VA | Registered: Jun 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Derek~ Good question...why/how did the rocephin, HBOT, and valcyte help me. Was it actually killing off the offending pathogen(s) or was it helping my immune system some how. I intend to ask the doctor at Stanford that question, as well as an LLMD who is following my case. I think that it has to do with killing off of the pathogens, for I had significant, defined herxes with all of the above. I will be reviewing this (as time allows) with the doctor on Friday.
I am very glad the sick feeling is gone. It disappeared overnight (remarkably) after 15 weeks on the valcyte. I hope it stays gone!
Skigal~ Read the patient's forum on testing at the hhv-6 website. Someone there found that their insurance covered Specialty Lab and used that lab.
Also, Focus is owned by Quest Diagnostics, so if your insurance covers Quest, it should (hopefully) cover Focus. Focus does have a customer service phone number and may be able to answer your question.
If you want to get tested at Focus or Specialty then please read at the hhv-6 website about testing (at their link) and in the patient's forum.
JR~ Interestingly enough, Dr. B does mention HHV-6 and other viruses as possible co-infections in his guidelines. However, he suggests PCR testing for diagnosis, which the hhv-6foundation says is not helpful. (About as accurate as PCR testing for lyme).
I agree with you...I think viral issues may very well be part of the reason why patients aren't getting well.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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But I didn't know what it specifically targeted.
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