It was discovered that my bladder had been pierced and i had to have a SPC. Upon returning to the UK i have since have 2 separate procedures (urethral dilation) neither of which have worked. At the beginning of August i had a complex urethroplasty all the time the SPC has been in place. Once the urethral catheter was removed roughly 2 weeks ago i've found that my bladder is not emptying fully. I'm still having to use the SPC to fully void.
My husband has this problem everytime the SPC needs changing, tried regular 4 week changes and still stuck. Now has GA every 12 weeks to change the catheter along with botox and prostate massage. Around the 10 week mark he too finds it so painful to touch the tubing etc. Has had SPC two years. Next change Monday and urologist cannot explain why it sticks so badly.
I just joined this forum and have a question regarding my EBV tests and Valcyte. My doctor wants me to start Valcyte for my elevated HHV6 and EBV antibody levels. I will post them and if anyone here has any thoughts on them I would very much appreciate it. I know this isn't an HHV6 forum but I will post the test results as well.
HHV6 Ab IgG 21.44 (range 0.1-1.
s (Stanford University) Valcyte trial. Fortunately... he was one of the lucky ones. The first Valcyte trial was a success, but I've heard (without seeing the results) that the second trial wasn't. One woman claimed on the internet that she became worse after taking Valcyte. Of course Valcyte is a nasty drug and this trial and many physicians won't prescribe it unless you are disabled.
CMV is the most common infection is post transplant patients which is why we recipients are prescribed Valcyte for a period of months after our transplants as part of the anti- fungal, anti-bacterial and anti-viral regime of meds along with out immunosuppressants.
In the vast majority of patients, CMV disease responds to treatment with intravenous Cytovene/ganciclovir.
Turns out, surgeon didn't leave adequate instructions regarding plugging the spc in the post-op timeframe. I found this out via a conversation with the surgeon's RN a few days ago. I apologize for any confusion. I was simply confused.
However after about a week and a half to two weeks the pain went away. I was started on Valcyte about 2-3 weeks after all this. I also had a blood vessel rupture in my eye towards the back making it almost impossible to see anything when I went to try and find out what was going on (Have been seen by three different optometry clinics). I Have also been using Predisonal 4-6 times a day and Cyclopentalate 2 times daily.
Why do that when we have Valcyte (also a little bit frightening, but probably not as bad as the chemotherapy treatment) ?
I do plan on adding Ampligen to the list of CFS treatments. I also need to add that Valcyte trial. But of course... some of these treatments for CFS are risky. I want to include my personal thoughts on that as well (and anyone elses).
Antivirals suppress the immune system and as jason said, "keep the bugs at bay". There is one antiviral, Valcyte, that apparently is either curing or putting some CFS patients in remission... but the risks involved with Valcyte are too risky for me.
(about Valcyte: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.
The only two treatments that I am aware of that has apparently cured some CFS patients would be the antibiotic protocols (I listed some of them in the health pages) and Valcyte, a very powerful anti-viral drug. The co-founder of PetsMart was on the original study and he is now jogging again. He said he had CFS after a flu-like illness and I believe he was disabled when he participated in the study. I believe Dr.
It is working, although it takes years and can make you feel worse. But it is intended to cure CFS... just like the drug Valcyte. But Valcyte is an immunosuppresant and has some very toxic and possibly deadly side effects.
If you have any questions for Dr. N... zip them my way before 5 PM (Pacific Time) today. Send them via PM or note.
wow thanks for answer can i ask one more having extra beats vents and spc both less than 50 a day holter results.
The other viruses showed latent infection controlled by the immune system. I was given Valcyte 450mg a day for 4 months.. after that 2x1000mg valtrex (valacyclovir).. my CMV titers fell down the half and i stopped the medicine.
Now im thinking.. that all the time, all my problems are caused by the ebv virus.. and i think im right because all other things.. like:
vitamins (also vit D, B12 .....)
Infections (really all kind of Infections.. babesia, bartonella, toxoplasmosis...
My son is 16 and was diagnosed with mono February of 2012. He has had neurological difficulties and a steady cognitive decline. His HHV-6 IgG was 1:1280 and his DNAse B antibody was 448. His doctor wants him to start Valcyte. Does anyone have any thoughts on this.I'm not sure how this will effect him while going to school.
I cant live with a tube in my penis for the rest of my life , that I have to get changed monthly and the pain is HELL so I am left with no choice but get the SPC ( supra pubic catheter ) and that is an open wound in the belly that has to be kept clean and dry with a catheter directly threw the belly into the bladder and ugly as hell and extremely nasty. I was already getting my *** kicked from lupus and now I have this added to my hellish life.
Phelps, his daughter, Shirley Phelps-Roper, and other church members had protested near the August 2005 funeral of Army Spc. Edward Lee Myers in St. Joseph, Missouri. The married Army Airborne Ranger died while on patrol in Samarra, Iraq, when an improvised explosive device detonated near his Humvee military vehicle. He was 21, and in addition to his wife, he left behind a daughter. He was later buried at Leavenworth National Cemetery in Kansas.
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