Treatments for chronic fatigue syndrome

Jun 29, 2008 11:55 AM by Kimberly Kaye

Posted in Health & Wellness / Women's Health / Conditions

Treating
Chronic Fatigue

Chronic fatigue immune disorder syndrome (CFIDS) is a debilitating disease that currently affects over one million Americans. Because many outsiders see it as being "simply tired," people with chronic fatigue syndrome often feel hopeless, misunderstood, and opt to not talk to a specialist. However, though a CFIDS diagnosis can be devastating, you don't have to suffer helplessly. Treatment options are available and, in combination with lifestyle changes, can help you manage your illness. And most important, getting treatment can help you take back your life.

CFIDS

CFIDS is more than just being tired

Is chronic fatigue the "yuppie flu" or is it actually a dangerous illness? If you have never experienced the unyielding exhaustion and the severe flu symptoms that never go away, you might think chronic fatigue syndrome is a made up illness of people who are simply tired.

However, chronic fatigue immune dysfunction syndrome (CFIDS) is a debilitating illness that currently affects over one million Americans, targeting more women than men, and greatly disrupting their family, work, and general lifestyle. People with CFIDS are burdened with a disturbing array of physical and cognitive abnormalities that, to date, has no known cure.

Get diagnosed and seek treatments

If you happen to have CFIDS and have been diagnosed, there are steps you can take to help you better understand your illness. But there are also successful treatment options that can help you manage CFIDS and its symptoms.

While prescription drugs can be used to treat the insomnia, depression, pain, and anxiety associated with CFIDS, integrating other treatments and techniques with prescriptions can double your relief.

Following are a few strategies that can help you manage your symptoms, reduce fatigue and boost your overall immunity.

Treatments for chronic fatigue syndrome

Never begin any treatment plan without first consulting with a knowledgeable specialist. This list is in no way conclusive. For other treatment options, consult with a licensed professional.

Boost your Immune System

Also referred to as immune system adjuvants, immune boosters can help the body defend itself against potentially harmful invading viruses, bacteria and fungus which prey on weakened immune systems.

While no immune booster is a cure for CFIDS, warding off even simple infections, such as the common cold or flu, can prevent relapse and flare ups. On-going immune therapy with one of the following options can strengthen a weak system.

Hepapressin complex injections. Hepapressin, the generic name for Kutapressin, is an amino acid complex originally created to treat the virus herpes zoster. Years ago, Dr. Derek Enlander, a CFIDS specialist in New York City, tried the complex with his patients. When initial results yielded improvement in only 30 percent of his participants, Enlander combined the complex with several essential vitamins and minerals known to boost immunity and fight fatigue. The new injection, made of Hepapressin, glutathione, magnesium, vitamin B12, folic acid, folinic acid and trace elements (when administered weekly) yielded improved results in 67 percent of patients. Enlander now uses the weekly shot as part of his CFIDS treatment protocol.

Vitamin C. Known as a powerful antioxidant, vitamin C reduces damaging oxidative stress in the body and is recommended to help ward off colds and infections. As the body does not manufacture vitamin C on its own, supplements or dietary sources are necessary. While the recommend daily dose for average American adults is around 100 milligrams, some specialists recommend much higher doses for ill patients (at least 3,000 milligrams per day). However, consult with your doctor or a licensed naturopath to determine your proper dose.

Immune Supplements. While there are thousands of immune supplements on the market (and hundreds of fakes), some actually may live up to their claims. Dr. Enlander prefers orally administered high-quality mixes of glutathione, l-cystine and selenium, like those found in his preferred adjuvant, Immunoprop.

In addition, Chinese medicine suggests that mushrooms, as well as tea extracts, available at health food stores, can also improve immunity by boosting natural killer cell activity. Do your research to find brands that are both reliable and safe, or ask a specialist for suggestions.

The Methylation Cycle Treament

Recent research has shown that the methylation cycle, a process involved in cell replication, organ regulation and immune maintenance in the body, may be deficient in people with CFIDS. This deficiency can contribute to fatigue and infection.

Several researchers and specialists believe that by supplementing cells with the minerals, vitamins and substances which drive the methylation cycle, the body may be able to kick start or support the cycle, which can potentially ease symptoms and prevent further cell damage. Supplementation with a combination of active glutathione, l-cystine, methylcobalamin (active vitamin B12), vitamin B6, folate, folinic acid, selenium, calphosan, magnesium, sam-E and other trace elements has been found useful in this case.

However, do not read this and decide to supplement at random! Due to potential complications from treatment and the need for monitoring, a doctor's guidance is absolutely necessary. To find doctors experienced with methylation cycle treatment, consult with www.CFIDS.org, or contact researcher Rich Van Konynenburg at richvank@aol.com for more information.

Treat Secondary Infections

As with other immune compromised individuals, such as HIV and cancer patients, secondary bacterial and viral infections can invade the body's weakened defenses. Secondary infections include:

Clamydia pneumonia, a bacteria that can cause chronic bronchitis and mild pneumonia in the lungs.
Mcoplasma pneumonia, another bacteria which causes respiratory infection
Systemic candida, an all-over infection by the same strain of yeast attributed to common yeast infections.
Hman herpes virus simplex 1 (HHV1), a form of the herpes virus, which can cause cold sores, shingles and, in rare cases, encephalitis.
Hman herpes virus six (HHV6), a non-sexually transmitted form of the herpes virus which can cause organ inflammation and exacerbate CFIDS symptoms.

Antibiotics. Simple blood tests can be performed to determine whether a patient has secondary infections. In the case of bacterial infections, antibiotics can be used to kill off the invaders. Candida infections, which can be exacerbated by antibiotics, are usually best treated with probiotics, such as acidophilus, which kill candida and build healthy "gut flora" in the stomach, preventing future candida overgrowth. In extreme cases, a doctor may need to intervene in treating candida.

Antiviral therapy. Antiviral therapy is a controversial subject within the CFIDS community. Several specialists now believe that the disease can be triggered by viral infection, and that aggressive treatment of existing HHV6 (and, to some degree, HHV1) infections can lead to a working "cure" for some.

The most watched study on the subject, headed by Dr. Jose Montoya of Stanford University, is currently testing the effectiveness of the potent drug Valcyte in the treatment of HHV6 infected CFIDS patients. Results from the study are expected later this year.

Diet and (the right kind of) Exercise

You know the rules to good health - eat right and get plenty of sleep. These rules are even more essential for people with CFIDS.

Diet. Eat a diet rich in lean proteins, like fish and fowl, consume at least five to seven servings daily of healthfully prepared fruits and vegetables, and avoid substances which can agitate digestion and upset the immune system, such as preservatives and chemical additives.

For some people with CFIDS, dietary restrictions, such as avoiding food allergens like gluten, dairy, or sugar, may also provide added relief. You may even consider eliminating the daily glass of wine or other alcohol for a time, and see how you feel.

Exercise. While some doctors or specialists, particularly those with limited knowledge of CFIDS, may recommend exercise therapy, this is to be approached with extreme caution. Dr. Enlander and several other experts warn that exercise (even walking, in some cases) may trigger extreme fatigue and full-blown relapses.

If you have the energy to exercise, start with mild, five-minute walks, journaling how you feel before, immediately after, and the day after activity. If symptoms flare, exercise may not be an option for you at this time.

However, if you experience no adverse reaction, gradually increase exercise over the course of several weeks and months, journaling daily. If symptoms return or relapse occurs, journaling will offer clues as to whether exercise is to blame - and let you know what your limits are next time.

Take back your life

You can take back your life by exploring the various treatments for CFIDS. Don't suffer silently and don't accept that you will always be burdened with your symptoms. Though there is no cure for CFIDS, you can improve the quality of your life.

Comments

Comments on "Treatments for chronic fatigue syndrome"

All, I know my reply to this is years late, but I work for NexcoPharma (maker of Nexavir). We purchased the license to manufacture Kutapressin from Schwartz a few years ago. We renamed it Nexavir. I can assure you, it is absolutly the same compound, just a different name. Kutapressin/Nexavir is made from porcine (pig) liver. Hepapressin is made of bovine (cow) liver. It is not the same compound.

I hve been asked to write a note on this website about Kutapressin,Hepapressin and Nexavir. We have used Kutapressin for about 12 years in the treatment of ME/CFS, until Schwarz Pharma stopped making it. We initially tried Nexavir but due to the preservatives in it we changed to Hepapressin, which is identical in its makeup to Kutapressin. It does not have preservatives so the injection must be kept refrigerated. We use Hepapressin in conjuction with Methylcobalamin,folic acid, magnesium sulphate,calphosan, glutathione, trace zinc and molybdenum. The injection is given weekly and was suggested by "RichVank" as fitting with his theory of methylation cycle problems in ME/CFS. I do not remember being interviewed by "SHE KNOWS" but I do not claim that all patients are helped by Kutapressin, Hepapressin or Nexavir ,about 67% of patients find it helpful. It is not an immune system "activator" rather a modulator.

I don't think this article ever stated it contained a "cure," or that it was the only treatment plan out there? We as patients spend more time bickering with each other over treatments or attacking the media when they finally DO write about CFIDS than we do bonding together to continue raising awareness and campaign for more government funding.I found this link on the Association homepage, and it seems to be an overview of a few different "treatment" options currently being used, that's all. And the overactive immune function patients experience isn't exacerbated by so-called "immune boosters" - that seems to be a one-size-fits-all layman's term doctors use for supplements anyway. We as patients ALL need to be less sensitive about whether someone writes about what we use personally (or don't use) and pay more attention to supporting the outlets that DO publish information that legitimize the illness. This article doesn't say to take antidepressants or sugar pills or PRAY to get better - it lists the way one doctor treats his patients. THANK YOU to SheKnows for printing this and at least sparking a conversation. SUPPROT THE GRASSROOTS CAMPAIGN: www.cfids

Wow. Im seriously concerned about the fact that the article states a PWCFIDS to actually boost their immune system! Many studies show that our immune systems are overly stimulated leading to this massive fatigued state we are in. While someone with AIDS immunity is extremely low, ours is extremely high with the body constanty fighting off something that may not even be there. In other words its chronically turned on. No puns intended. Modulation of the immune system is key here. And speaking of Kutapression, ive had 8 months worth of the ultra painful shots about 16 years ago and its made from pigs liver. Its useless. Ive also had amiligen infusions for 18 months. Now theres a more interesting prospect of drug for you. Remember, until they find the CAUSE they will not find the CURE.

Kimberly, thank you for taking the time to reply; I'll butt in just one more time. Because this might, in the future, be read by someone who was wishing that Kutapressin were still available. I think it is important to emphasize that there IS now a generic equivalent. I am taking it. It is the same stuff. You can compare the package inserts. Nexavir IS the same, and Hepapressin happens to be something else. I'm sure if you pressed Dr. Enlander, he would agree, and regret this confusion. Sadly, neither Kutapressin/Nexavir nor Dr. Enlander's formulas help everyone who "has CFS."

Laurie, thank you for adding your experience to the forum here. If I were to write an article on the numerous treatment options which showed promise, were discontinued due to low sales or made unavailable to patients altogether in various countries despite their theraputic nature, Kutapressin would be on the top of the list. While researching the article, I obviously did not encounter any CURRENT published treatment protocol which mentioned Kutapressin and Nexavir by name (which is not to say they are not Nexavir-inclusive plans out there - hence the disclaimer on the top of the page, which states that this list is in no way conclusive). I did encounter Dr. Enlander's research on the previously used Kutapressin and the presently used Hepapressin, which he has written to be a suitable substitute in his practice; that research, as well as the manufacturer's information on Hepapressin suggest that the two complexes are similar and used similarly. That is the reason the two were linked and written about in this article. While Kutapressin in the dose you were taking does indeed sound like a godsend, I could only write this particular piece about treatments which were being used presently (since Kutapressin has since been discontinued, to the disadvantage of patients it could not be included). Ideally, articles and patient interest like those posted here will drive the industry until a safe, reliable and affordable treatment plan and CURE are finally provided. Thanks!

Shelly and Susan, As I understand it, Kutapressin was, as an ingredient, a small fraction (less than 20%) of the injectable formula that Dr. Enlander uses. I was injecting Kutapressin by itself, daily, as directed by my doctor. It was close to miraculous. When the company couldn't make any more, I suffered cruelly. When I heard someone said that Dr. Enlander said it was the generic equivalent, I jumped and gave Hepapressin (Injectable Beef Liver Extract) a good try; it did nothing for me. It is NOT the equivalent. Believe me, I wanted it to work. I'm not disparaging Dr. Enlander or you. Can we agree to put it this way: "Dr. Enlander's patients respond to his formula containing Hepapressin positively, as they did when it included Kutapressin."

Laurie: Hepapressin is an amino acid complex derived from animal sources. Kutapressin was the original complex, which went off the market and sold its license to Nexavir, which is indeed a substitute. However, as listed in Dr. Enlanderâ€™s 2008 edition of his book and research from the 2007 international guide to prescription drugs, Hepapressin is a kutapressin equivalent and therefore used in its place the same way Nexavir is.

To Laurie: While Hepapressin is not the same as kutapressin, it is the non-Nexavir alternative, and used in CFIDS treatment in the same fashion that Kutapressin was before it sold off to Nexavir. Kutapressin would have been ideal, but you have to work with what you've got I guess! My sister uses the Hepapressin shot weekly and it seems to help - she notices a difference when she doesn't have it. I know Enlander pushes its use as part of his protocol publicly, so it can't be that much different from kutapressin?

Thank you for this article, it seems to fit in a lot of info about CFIDS that I have been trying to patch together myself.

Hi - there's a serious error in this. Hepapressin is not at all the same as Kutapressin! But Nexavir is. There's a yahoo group for Kutapressin, by the way. It was formed when Kutapressin was no longer available, and desperate patients were trying to find help.