However, there is a research drug called Ampligen that has helped many patients with CFIDS. The problem ? It cost $20,000 a year and I believe it still isn't FDA approved. Also, this is something that I believe you need to take for the rest of your life.
Another option would be Valcyte, another antiviral. Many physicians are hesitant to prescribe this drug for their patients because it is such a powerful drug, that it lowers your white cell count and other labs.
Below is one of my responses to a member in the EBV forum who was just diagnosed with CFS. His physician had prescribed him an antiviral and he didn't have much success.
I am being treated for a bacterial infection and having success with that treatment. Antibiotics or natural formulas are all you need. However... I'm not going to lie to you.
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.
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.
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 want to become a mother again. I have a 19 y/o. I am a newly wed. My husband has no children we are considering IVF but it is so costly. Not sure if I am able d/t high FSH. didn't get result for AMH as of yet. But if its not possible for me to have one biologically we are considering using DE. My question. Is it cheaper using a family or friend as a donor in comparison using an anonymous donor. Where I am living, it cost $16,500 for DE...IVF cost almost $20,000.
Oh my goodness! That is so expensive. Here in new zealand all medical care is absolutely free. It seems unethical to charge someone to give birth!
Can anyone give me a ballpark of the cost for the suppressant drugs after a transplant. Just want to get an idea, know no one can give me exacts but any info would help. Thanks.
umm in the usa without insurance, n im chronic.
hello again, thanks to all the people that responded. was wondering about the cost of meds. interferon and ribavirin, im checking with my ins. to see what they will cover. i may have misspoke about this thing on hepititusccure.net i dont think it is herbal? it deals with fatty liver tissue. but its only 50 bucks to read about it so i dont really have anything to lose. going back to doc in 3 mo. not sure why till i decide on tx. if tx takes care of virus, do people go back to normal lifestyle?
The difference between the full cost of a treatment (which the uninsured often are charged), and the amount the insurance company tells them they will pay is often quite a bit. If you have cash and offer to pay up front (for a discount) you may get charged less than what they can get out of the insurance company, because it's less hassle and instant money for them.
Just a thought, even if you had to borrow the money.
Will your Endo accept results from another facility?
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