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» LymeNet Flash » Questions and Discussion » Medical Questions » Scared to start Valcyte for CMV...

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Author Topic: Scared to start Valcyte for CMV...
Geneal
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Good morning all.

Sure did miss you and this forum!

Saw LLMD last week.

Back on Malarone (4 x a day), biaxin (1000mg a day),

Sporonax (1 a day), Armour thyroid (15mg a day), Cortef (2.5mg a day), flagyl (250mg once a week).

LLMD said my CMV titers were so high the lab could not measure beyond a certain point.

Rx. valcyte.....900mg a day.

Scary drug. Cancer causing and all of that.

Am to get CBC and liver enzymes checked weekly.

Has anybody else taken this?

Do you herx from it?

I am already in a lyme/babs herx from malarone and biaxin.

Scared to death to start valcyte.....but LLMD feels CMV is holding up my progress.

Any words of encouragement are greatly appreciated.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Blackstone
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Just a question, but have you ever considered a less caustic antiviral first, before Valcyte? See if you get an improvement with something like Valtrex, or Famcyclovir? These drugs are less "nasty" and millions of people take them for genital herpes infections without much problem.

I took famcyclovir for awhile to see if EBV was a problem for me (I have titers, but then again I had mono, so I'll always have titers. Nothing to suggest they were "active" titers as opposed to "inactive" phase). I had no reaction one way or the other, and no problems with the drug.

Posts: 685 | From East coast, USA | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
brf
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There are some good discussions on valcyte over at immunesupport.com that are really informative - worth checking out!

Best Wishes
Barbara

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Geneal
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For some reason, my LLMD feels that this is the "best" drug for my CMV.

I am hoping to only be on it for one month or two.

Just to get the titers down....not get rid of it.

I did check out other forums for valcyte....nothing too bad....possible herx from it though.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Geneal
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Thanks Chris.

I think my LLMD just wants to get my CMV titers down.

Tackle the Lyme again and then hopefully let my own immune system handle the problem.

I feel better about starting it now.

Thank you so much for the information and enouragement re: side effects and such.

Hugs,

Geneal

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timaca
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This is a very interesting post.

Geneal~ Congrats to your LLMD for recognizing high CMV titres and wanting to treat it.

I was very pleased to see an ID doctor (Dr. Montoya) treating patients for a long time with a drug (in this case anti-viral). Especially since the ID lyme doctors don't like to treat with antibiotics for longer than 1 month.

There is info about HHV-6 and other viruses at www.hhv-6foundation.org

mynewname~ What was your initial WBC and how low did it drop? How long before recovering? I may be taking Valcyte too (due to possible HHV-6 infection) and my WBC is in the 4s usually....it can't afford to drop too much!

My husband has a HHV-6 titre like yours....and he is presenting with cardiomyopathy. He has NO other symptoms (he also has high EBV, Parvo and CMV titres). He will be seen by an ID doctor soon regarding this....and a possible trial of Valcyte.

Timaca

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lalalu
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I have been using cold laser therapy. The doctor was able to get the CMV down to a tiny marker, using a low level laser. He was also to minimize other viruses which were complicating matters.

I have to say that it helped me turn a corner in this illness. He used an Erchonia 3LT Laser - PL5000 and would use the frequencies of CMV (as you use with a Rife machine).

My LLMD is a huge fan of using energy therapy such as this. If you'd like info, please PM me.

--------------------
http://chroniclyme.blogspot.com/

"Illnesses, hover constantly above us, their seed blown by the winds, but they do not set in the terrain unless the terrain is ready to receive them."---Claude Bernard.

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MommaK
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Hi Geneal!

Thanks for this post. Our llmd also mentioned starting Valcyte at our last visit for high HHV-6 results, but decided to wait. Have been on valtrex for about two months with some improvement.

I think he thought the valcyte might work better. One of my daughter's worst symptoms is head nerve pain. Some think that viruses can agrivate the nerves.

He ran more tests, and I got the results, but they are from a different lab than before and the results are not in the same format so I'm not sure if the labs show improvement, but I think so.

Good luck! Take Care of yourself and your immune system!

MommaK

Posts: 242 | From Mississippi | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
   

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