Chronic Fatigue Syndrome HHV-6
CHRONIC FATIGUE SYNDROME HHV-61 - Powerful anti-viral drug, Valcyte’s potential as chronic fatigue syndrome cure.
Dr. Jose Montoya, a chronic fatigue syndrome physician at Stanford Medical School, treated 25 chronic fatigue syndrome (CFS) patients with Valcyte, an oral medicine that blocks HHV-6, Epstein Barr virus and other Herpes family viruses.
Spectacularly, 21 of 25 patients dramatically improved. Most achieved near resolution of their CFS symptoms after a six month course of treatment. This allowed return to work or other full-time activities. Of those whose CFS had begun with a flu-like illness, 20 out of 21 gained improved health. In April 2009, Dr. Montoya presented the results of a six month’s long double blind study. The results were still encouraging but not as dramatically as in the first open study.
For an update on Dr. Montoya’s more recent progress, enter search terms “Montoya fatigue” on the Stanford Medical School’s website and then select the title New Therapy For Chronic Fatigue Syndrome to be Tested.
If confirmed by further studies, Dr. Montoya’s research tells us two important facts:
- HHV-6 and/or Epstein Barr Virus can cause Chronic Fatigue Syndrome
- Valcyte might be an effective treatment for Chronic Fatigue Syndrome HHV-6 related illness, perhaps, even a chronic fatigue syndrome cure.
This image on the left shows the structure of the HHV-6 virus. Anti-viral treatment for Chronic Fatigue Syndrome HHV-6 increases hope chronic fatigue syndrome cure.
Roche Pharmaceuticals gave Dr. Montoya and his chronic fatigue syndrome physician team $1.3 million to do a double-blind study to confirm Valcyte’s effectiveness as a chronic fatigue syndrome HHV-6 treatment. However, results might not be available for at least a year or more.
How Chronic Fatigue Syndrome Physicians Tell the Difference Between Active HHV-6 Infection, which should be treated, and latent/inactive infection, which should not.
Chronic fatigue syndrome physicians are concerned about this problem: Since almost everyone has had an HHV-6 infection at some point, latent inactive HHV-6 is present in most of us. That’s why perhaps 80% of healthy people show up positive on standard blood antibody tests for HHV-6. But, while for most people HHV-6 remains inactive for life, chronic fatigue physicians believe that in a few people a triggering event happens. This causes latent virus to become active, aggressive and infectious. The result: possibly chronic fatigue syndrome.
Chronic Fatigue Syndrome HHV-6 Pathways: How Latent Virus Infection can turn into symptomatic, active CFS Illness. Can HHV-6 treatment be a chronic fatigue syndrome cure? (Courtesy of the Wisconsin Viral Research Group)
Click on the graphic on the right to see an enlarged view.
Which Diagnostic Tests Help Chronic Fatigue Syndrome physicians decide whether your HHV-6 is active or latent? Do you have active chronic fatigue syndrome HHV-6?
Blood antibody tests for HHV-6 are available through many commercial laboratories. Such blood antibody tests are helpful but not definitive. Many people are positive for HHV-6; but the higher the antibody levels, the odds increase that you might have active chronic fatigue syndrome HHV-6. But the antibody test is far from perfect. Some persons with relatively low antibody levels have active HHV-6. Some people with high antibody levels don’t.
Blood Culture and Antigen test for HHV-6: The Wisconsin Research Group offers a Herpes virus culture test. Their lab is the best for HHV-6 testing. While standard antibody tests against HHV-6 also should be done, the Wisconsin test may be more accurate. Ideally you should have the standard test and also the Wisconsin test before making a decision about Valcyte treatment for CFS.
Nested PCR: The Wisconsin Viral Research Group also offers a sophisticated test to detect actual virus particles in the blood. This is called nested PCR. The Wisconsin Viral Research Group version is more sensitive and accurate than the standard PCR.
If you have high HHV-6 antibody levels and a positive Herpes Virus 6 culture, consider the pros and cons of Valcyte treatment for your chronic fatigue syndrome.
For more information on chronic fatigue syndrome HHV-6 testing visit the website of the HHV-6 Foundation
For the Wisconsin Viral Research Group visit chronic fatigue syndrome HHV-6 Testing
Cautions and Warnings About Valcyte as A Chronic Fatigue Syndrome Treatment
Dr. Montoya’s 25 CFS patients did not suffer dangerous side effects when he treated them with Valcyte. However chronic fatigue syndrome physicians are also very clear: Valcyte is a drug with potential toxicity. The body converts Valcyte into Ganciclovir, a well established but potentially toxic anti-viral medicine. Valcyte is approved by the FDA to treat CMV virus. It does not have an FDA indication for HHV-6 or as a treatment for chronic fatigue syndrome.
Potential side-effects of Valcyte/Ganciclovir include suppression of white blood cells, red blood cells and/or platelets. Low white blood cells increases risk for infection; low red blood cells causes anemia; low platelets increase risk for bleeding. If not monitored, detected and reversed, these complications can be fatal. Fortunately, side-effects can usually be reversed by stopping the Valcyte or by lowering its dose.
Valcyte’s side effects can also include nausea, diarrhea, abdominal pain, fever, headache, insomnia, mood changes, tingling sensation--and much less commonly, epileptic seizures. In animal studies, Ganciclovir can cause cancer.
For Chronic Fatigue Syndrome HHV 6 and other Valcyte treatments, CFS patients should have blood tests monitored often (e.g. weekly).
If Valcyte/Ganciclovir is so dangerous, why would chronic fatigue syndrome physicians consider it as a potential treatment for chronic fatigue syndrome HHV-6?
A good question, and there’s a good answer. We have no effective drug treatments for chronic fatigue syndrome at present. If your illness is severe enough, the potential benefit from Valcyte treatment for chronic fatigue syndrome HHV6, might reasonably be considered to be worth the potential risk. That’s the key decision that you and your physicians have to make. On balance, the answer for most patients will be no. But, for a few the balance of risks versus potential benefits might be attractive.
Consider this analogy to chronic fatigue syndrome HHV 6. If you had cancer or disabling rheumatoid arthritis or chronic hepatitis, specialists routinely recommend medicines that are as or more toxic than Valcyte. So too for chronic fatigue syndrome HHV 6. One weighs the risks of adding Valcyte treatment against the risks of not treating and letting the disease “take its course”. Not an easy decision since until double blind studies are done we can’t really know if this anti-viral drug might be a chronic fatigue syndrome cure.
Dr. Podell’s Perspective on Chronic Fatigue Syndrome HHV6 Treatment with Valcyte/Ganciclovir
As a chronic fatigue syndrome physician, I recommend that persons whose CFS allows them a decent quality of life should not take Valcyte at this time. But, do test blood antibodies and/or Herpes virus culture. Keep up to date on this potential treatment option, especially as safer anti Herpes drugs become available.
For the most reliable and up-to-date information about chronic fatigue syndrome HHV-6 go to Pubmed.gov database of the National Library of Medicine. Enter the keywords Chronic Fatigue Syndrome HHV-6, and/or Chronic Fatigue Syndrome Treatment HHV-6.
While waiting for further news consider adding relatively non-toxic natural immune system stimulants to your chronic fatigue syndrome treatment program e.g. high dose Lactobacillus Acidophilus, HHV-6 transfer factor, or Fungal cell wall immune stimulants such as AHCC or Peak Immune Factor 4.
Do CONSIDER Valcyte treatment for chronic fatigue syndrome HHV-6 if your CFS is severe and disabling. (Sadly, we are not likely to have more double blind studies soon, since Roche, who makes Valcyte, has decided to not continue supporting this research.)
In our New Jersey (NJ) offices, we take these steps to evaluate an individual’s potential use of Valcyte for Chronic Fatigue Syndrome HHV6 Treatment:
- Confirm that you really have chronic fatigue syndrome, not one of the many other conditions that can mimic CFS.
- Look for other treatable aspects of your illness e.g. unrecognized low thyroid, sleep apnea, adrenal gland problems, inadequate nutrition, anxiety or depression.
- Add natural holistic nutritional, herbal and/or mind-body treatments to support the body’s natural ability to heal.
- Be sure that social and psychological supports are in place to help you and your family cope better with the illness.
- Test HHV-6 antibody levels and HHV-6 culture and antigen tests.
- Ask you to read the FDA-approved drug package insert for Valcyte. (Click Here for Valcyte Treatment for Chronic Fatigue Syndrome Package Insert)
- Valcyte patients would see Dr. Podell weekly during the first weeks then every two weeks for an estimated six month course of treatment. Blood testing monitoring for Valcyte toxicity would be done frequently.
For persons with chronic fatigue syndrome HHV6 or EBV who live in New York (NY), Pennsylvania (PA) or more than one hour away from our Summit or Somerset, New Jersey (NJ) offices, Dr. Podell can perform the necessary evaluation for chronic fatigue syndrome HHV-6 within two or three visits. Dr. Podell can then consult with a physician near you, who, if you decide to take Valcyte, can directly supervise the treatment. For chronic fatigue syndrome evaluation call Dr.Podell’s office 908-273-7770.
1HHV 6 stands for Herpes Virus 6, the sixth virus in the Herpes family. The standard spelling is HHV-6, but we also see it as HHV 6 and HHV6. Chronic fatigue syndrome physicians believe that Chronic Fatigue Syndrome HHV-6 may affect up to 50% of CFS patients. Other Herpes family viruses include Epstein Barr virus (EBV), Cytomegalovirus (CMV), Herpes Simplex (oral and genital) and also chicken pox virus (Varicella Zoster).