Updated: 10/20/04			SYMPTOMATIC TREATMENTS
We are in the middle of adding another section on treatment which is more inclusive than this is.  It will take a few weeks to complete our work.  Please bear with us. TREATMENTS: Since no one knows what causes CFS, there is no treatment protocol to either cure or treat CFS. There are no FDA-approved medications. The current approach is lifestyle changes as well as alleviating some of the CFS symptoms (covered in "CFS MANAGEMENT"). Since it appears that very few PWCs (People with CFS) have the same symptoms or combination of symptoms, to a degree, it is really the patients who must be responsible for their own treatment until a cure(s) is found.  Hopefully, you have a pro-active doctor who will support you and help in your quest for better health.  Again, go to www. immunesupport.com and you will find some very good articles on treatment of CFS/CFIDS. There are also numerous websites which we list later ("WEBSITES...") that you can use for your education.  Some of the items mentioned below are included in these articles, but notice that no one yet really has a definitive answer because CFS has too many facets. Not all people react to treatments the same way; thus, those treatments that help some do not help others and may even give unusual and adverse side effects.  When you get to the “SPECIFIC DRUGS AND SUPPLEMENTS” section (a work in progress), you will find a very long list of drugs, vitamins, supplements, and alternative treatments. NOTICE:  There are a lot of treatments being used for CFS/CFIDS/FM/ME.  Obviously, there are many mentioned which were contributed by some of our helpful assistants who have completed the "QUESTIONNAIRE" AND/OR "CONTACT US".   There are some areas where our knowledge is extremely weak, such as, ACUPUNCTURE, HOMEOPATHIC MEDICINE, AND ORIENTAL MEDICINE.  We will appreciate and post responses that we can get from people far more expert in these areas. As we have continually stated, we are not doctors nor are we in the medical profession.  Always take a list of your current medications, vitamins, and supplements to all doctors you see and to every pharmacist you use.  All medications usually have some kind of side effects, and various combinations can have serious side effects or even be potentially deadly.  The medical profession watches drug combinations much more closely now than even 10 years ago.  Most pharmacies have computer programs to alert them of possible dangerous combinations.  Even doctors today have "computer programs in small hand-held equipment” which enable them to quickly check for problems.  Unfortunately, most of the medical profession has limited knowledge of the effects of vitamins, supplements, and especially Oriental medications.  This will require you to do some of your own research on combinations of medicines and supplements.  There are several websites where you can do your own checks: www. immunesupport.com store, the specific item your are looking for, and then complete information; http://www.lifebalm.com; http://www. vitaminherbuniversity.com/herb_information.asp; and http://www.hillhealth.com/topics/sorted_by_drug.htn. Most doctors will sometimes prescribe medications that are unrelated to their primary use because they have other benefits that seem to work for some CFS symptoms: anti-depressants, anti-fungals, antihistamines, antivirals, stimulants, etc.  Don't be alarmed if you get a prescription for Parkinson's or something unusual.  Ask your doctor what the drug will do for you and check the information which usually comes with your prescription at the pharmacy.  Getting the correct dosage is often difficult because our immune systems are rather well messed up.  It is usually recommended that you start off with lower dosages and work your way up until you find a level that will work for you.  There are a couple of problems you can run into with this approach: 1) It is very expensive experimenting with medication  unless you have a very good insurance program, and 2) The medication may not help you even after a lot of expense. Again, It is important to note that all people react differently with medications.  A particular medication will  work for some and not for others.  It is also a good idea not to jump in with lots of medications, supplements, and vitamins at the same time because you won’t know which ones are really helping you.  We know how you feel, because we have this DD also, and are all looking for something which will help to quickly make us well, or at least consistently feel better.  We have made the mistake of trying too many things at one time.  So, which one or ones really worked?  We didn't know for sure.  So, we had to start dropping them one at a time to see which ones, if any, were helping us. The best approach is to determine which one or two symptoms are causing the most problems and try one or two medications for them.  Trying all these medications can get very expensive even with a good insurance program.   Secondly, we have found that our bodies develop a tolerance for the medication, vitamin or supplement; so, it stops helping after awhile.  Therefore, we stop some of them every 2 to 3 months and rotate them to make them more effective over the long run. WARNING:   We have a severe problem with people stating that they can "CURE YOU".  At this time, we do not believe that anyone who has really had CFS has ever been “cured”.  We can get our overall health improved or maybe get CFS in remission, but cured? No, we do not think so.  Secondly, we look twice at anything which will may or will help you after 3 to 6 months because this illness changes too often and irregularly.  With CFS, you can take a sugar pill and feel a lot better in a couple of months if you are managing your illness well.  Go to CFS chat rooms or message boards, and you will find frequent comments about how “that” worked for awhile and then stopped.  You have also noticed the ups and downs of this disease yourself probably or noted others' comments.  ProHealth, http://www.immunesupport.com is one of the largest and most used forums in the U,S,, but there are many others around the world.  Put “cfs message board" or  "cfs chat rooms” in a good search engine to find many options. These are listed by symptom, rather than in alphabetical order, and the medications most prescribed.  Any comments on effectiveness are only our experience and those who have assisted us,  Always discuss all medication with your medical professional. PAIN: PAIN: PAIN:   Everyone with CFS/CFIDS/FM/ME has pain.  We could write a book just from our own experience, comments we get from visitors to this site, and checking the numerous message boards and chat rooms we have visited ourselves.   Many people state that their doctors have referred them to pain specialists.  From the comments we have seen, the results are mixed.  Several mentioned that they have gone through weeks of torture before feeling any benefits.  As surprising as it may seem, many recommend moderate and regular exercise for pain control.  The following are the usual recommendations over the years: There are several kinds of pain that come and go with CFS, and each presents its own problems.  CFIDSy pain doesn’t seem to feel quite like any other kind of pain, yet it must be treated with what is available. Non-steroidal anti-inflammatory drugs are usually recommended to relieve muscle and joint pain, headaches, and fever. These include nonprescription medications such as Aleve, Advil, Motrin, Anaprox, Naproxen, Bayer Select, Numrin, and Feldene which are generally safe when used as directed. (But, please watch drug interactions.  When I was on blood thinners, Tylenol was recommend as safe until nightly pain forced me to go far over the recommended level.  My blood got so thinned out that I could have died from a seriously bruised injury or cut).  The use and selection depends on personal preference and your doctor’s recommendation and interaction with other medications.  We have had problems using over-the-counter pain relievers because they have not really worked for us “when used as directed” and even with increasing the dosage. Some doctors report that some of the newer ones work better: i.e., Diclofenac (Voltaren), Sulindac (Clinoril) and Arthrotec.  With the “overall” CFIDSy body ache and pain, we have found no over-the-counter helps to stop our pain. Often, the quick way to stop or reduce our pain (only on a short term basis) is a nice hot whirlpool bath (unfortunately, it just doesn’t last long). For severe muscle pain, nothing works. I suffer from these more frequently than my wife does. I find that magnesium and malic acid (or Ultra ATP) and amino acid complex (used by body builders to strengthen and ease muscle strain) do help to reduce the number and severity of the attacks. With respect to the other severe body pains we get, our doctors and we have found that Tylenol with codeine works best with the least number taken. We use Tylenol 3, depending on how severe the pain is. For extreme pain, we use Vicodin 5/500 mg. or 7.5/750.  Recently,  we have found that Aleve, along with Tylenol with codeine or Vicodin has given us relief longer than taking them alone. Strangely, Aleve alone does nothing for us.  The key is to control the pain with the least medication you can get by on because you can develop a tolerance to them and, sometimes, an addiction, if over used. This needs close work and cooperation from your doctor.  Don't get addicted to pain medication or any other type of medication, Some of the antidepressant drugs can improve pain.  For instance, I take Elavil (amitriptyline) that helps me sleep and alleviate pain.   We also take Klonopin (clonazepam) for sleep which can help with pain.  This group is called  tricyclies and usually need a doctor's prescription.  Others that are mentioned include, Doxepin Elixir, Ultram (Tramadol), Baclofen, et al.  We feel it is best not to resort to narcotics or opiods unless you really need them and your doctor agrees. I mentioned vitamins above that I use to help my muscle/leg pain.  I forgot to mention something extremely important which is EXERCISE.  For the last several months, I been down and struggling with my CFS and overall health.  I finally got my health where I could resume my exercises (at a very reduced level due to long inactivity) and quickly reduced the amount of pain in my legs, in particular, along with the amount of medication I have been taking for the pain. PSYCHOLOGICAL AND SOCIAL SUPPORT: This is probably the second most important treatment there is for CFS.  We need the physical and emotional support of others to keep us going.  Like any other chronic illness, we must give consideration to the psychological and social impacts of our illness.  The worst part of CFS is the guilt we suffer because of how our illness affects our families, friends, and work.  We know that we should be doing more for our families and friends.  It is also too obvious that our friends and family don’t understand our illness, especially the fatigue.  If we are disabled and unable to work, the guilt is sometimes almost unbearable.  In too many cases, our illness has wrecked marriages and friendships.  Too many times we feel at fault and alone.  Our first step has to be finding support and understanding.  Our doctors should be the first line of support and be prepared to be your advocate to your family, friends, employers, and your overall social welfare.  These people need to be educated about your illness.  Jean Kerr in Please Don't Eat the Daisies said  “...If you feel terrible, look terrible."    Unfortunately, we rarely look ill to others.  We have all gotten the comment  “You look great!” when in reality we feel so bad that we want to go home and cover our heads in bed.  This is just one of the reasons we need to educate not only ourselves, but those we affect and love as well.  A good step is to join a support group in your area or on-line.  You need to know that you are not alone.  From your doctor, support group, or on the Internet, you should also find educational material for yourself and others.  Education goes a long way to help us.  However, we cannot be passive in our illness, but rather proactive in finding ways to feel better and be more involved with our family and friends.  You can learn many things in this website alone to get you going, beginning with CFS management. ANTIDEPRESSANTS: CFS is not depression!  There is a difference between frustration and depression. However, many patients with CFS have benefited from a low dosage of antidepressants such as Prozac, Zoloft, Paxil, Effexor, Desyrel and Wellbutrin that improves the quality of sleep and/or even decreasing pain.  We have tried various dosages of Prozac and Zoloft over the last 6 -7 years with absolutely no benefit.  Enough people have shown success that it is recommended as something to try for 30 - 90 days. Carefully note in your journal any changes in your condition to verify whether it is working or not.  If you do not feel it is helping you, don’ t take it.  When taking all medications and supplements, work with your doctor.  Some medications have to be tapered off, not just abruptly stopped.  Watch for side-effects.  As mentioned above, some antidepressant drugs help with sleep and pain. ANTIBIOTICS: Antibiotics themselves do not help CFS, but immune dysfunction does come into play.  We have felt for years that when we have gotten an infection that requires an antibiotic, the antibiotic made us feel worse for a while.  In addition, for instance, when my wife gets a sinus infection, it takes more than one normal treatment with antibiotics to work and sometimes an increase in strength.  We both have other infections where normal treatment protocol does not work. Dosages vary greatly for different people. Of course, PWCs get sicker anytime they catch an infection and that has always been the catch.  As a result of my heart transplant, I must take 3000 mg of amoxycillin 1 hour before I go to the dentist, even to have my teeth cleaned.  Each has made me very ill about 3 days later, lasting for 5-7 days. We think that we can now say with certainty that antibiotics do affect our immune system and do make us feel worse. However, infections usually must be treated.  As a result of these problems, our doctor has been treating us with a “strong” dose of antibiotics when they have been required in order to try to cure the infection as quickly as possible with the least discomfort to us. Sometimes, antibiotics don’t seem to work period.  We are still trying different approaches with our doctor and don’t really have an answer at this time. Watch this, and discuss it with your doctor the next time you have an infection.  If anyone has come up with a solution, please let us know. ANTIVIRAL THERAPY: Acyclovir, for example, has not proven successful in studies and from our own experience. Acyclovir is a required drug for transplant recipients. Because of the research we had read about HHV6, CMV, etc. and the many prescriptions I take, we weren’t sure whether or not I had felt better taking it. So, we decided to try a 30-day treatment on my wife, with no success. At this time, there are no treatment protocols that show a long-term successful treatments for HHV6. There is a protocol for CMV which has appeared to work.  However, once no CMV turned turn up in my blood work; but, a few weeks later, CMV did show up in a throat culture that needed treatment.  We have checked with some doctors who specialize in diseases such as HHV6 and they are doing their own research.  At this time, they tell us that there is no long term protocol for treating HHV6. NONSEDATIVE ANTIHISTAMINES: It is said that people with CFS tend to have more allergies than the general population, but this may be due to the fact that some food and chemical allergies produce CFS-like symptoms and/or our immune systems are so messed up that we are now allergic to things we weren’t before.  Anyway, if you do have allergy problems, (first) get tested to make sure the allergies alone are not creating your condition, and (second) make sure any antihistamines you take have the words “non-sedating” or “non-drowsy” on the label.  Some nasal sprays used once daily have been shown to be very effective against some allergy symptoms without known side-effects.  We know that they tend to bother glaucoma, so check with your doctor. LOW-DOSE TRICYCLIC AGENTS: Tricyclic agents such as Adapin, Sinequan, Elavil, Etrafon, Limbitrol, Triavil, etc., are sometimes useful to improve sleep and relieve mild, generalized pain. Discuss them with your doctor and keep careful tabs on your health in your journal to determine benefits. Because most of us suffer from some form of sleep problem including “unrestful” sleep, some form of mild sleeping aid is often required. The key word is “mild” because many sleep medications leave a “drug hangover” the next day that only exacerbates CFS symptoms.  Please do not let the word “depression” stop you from taking medication that can help you.  We all know that CFS is not  "depression", no matter what some doctors say, but the "frustration" can be extreme. STIMULANTS: One therapy is to use low doses of stimulants like Ritalin, Dexedrine, or Adderall, and Provigil. The latter is said to have an excellent safety profile with minimal side-effects. It is intended to improve fatigue (alertness), somnolence, mental clarity, and depression.  However, as always, check with your doctor to see if it is appropriate for you.  Another therapy is the use of licorice, which is an old Chinese herbal remedy for fatigue. STIMULANTS DO NOT CURE CFS! HYDROC0RTISONE: Low- dose hydrocortisone studies suggest that it helps in reducing fatigue levels, according to the medical journal, “The Lancet”.  We have both tried 2.5 mg and 5 mg of Cortef for a 30-day period and have found the increase in adrenaline has helped improve our performance. Overall, we did not really feel that it was helping, but our journals indicated we were able to accomplish more with the Cortef than we were without it.  The only problem is that it can, and should, only be used if your doctor agrees to a test to provide additional endurance during special short-term needs. It should not be taken over a long period according to everything we have read or studied. Any adrenal supplements or stimulants can help over the short haul, but should not be used over a long period of time without your doctors consent.  PREDNISQNE  is also a steroid that has been suggested as assisting people with CFS.  Three different trials with my wife proved to be of no real benefit.  At best, a steroid should only be taken over a short period of time.   Stimulants and steroids do not benefit CFS over a long period of time or permanently. AMPLIGEN:  Much publicity has been given to this synthetic nucleic acid product that stimulates the production of interferon, a family of immune-response modifiers that are also known to have anti-viral activity. It is currently being tested and is not approved by the FDA for widespread use.  An article in “THE NATIONAL FORUM” states that serious side-effects have been reported during European trials.  Our prior research of Ampligen did not hold much promise for CFS. IV IMMUNOGLOBULIN (IVIG): Although this has been used by some doctors and listed as a potential treatment in many references, only 1 study out of 3 showed any benefit at all. The cost, inconvenience, and relative ineffectiveness of this treatment generally argues against its use. HIGH C0LONIC ENEMAS: have proven to be of no help to people with CFS. In some of our earlier research, we found that colonic enemas were being used to treat CFS.  We feel that this has been a far reach for some who have tried it.  There is also the possibility that the procedure can promote intestinal disease. YEAST INFECTION: treatments have not proven to benefit CFS, despite the fact that a couple of books have been written about the connection between yeast infection and CFS. Many people, usually women, do get yeast infections because of their overall health and medications.  Treatments should be used when infection is present.  Some doctors recommend just drinking cranberry juice as both a prevention and cure for yeast infection. DRY MOUTH:  Dry mouth is a new symptom to us that showed up a couple of years ago.  It has probably been caused by long- term use of medication or (maybe) supplements and vitamins.  It has also been mentioned in our replies and on some message boards.  Besides being very uncomfortable, dry mouth is a very serious problem which will cause tooth cavities more rapidly than your dentist can keep up with.  Crowns and root canals are extremely expensive especially if you don’t have insurance.  There is a new medication out by the same company who manufactures Liquid Tears called Salagen which requires a prescription.  It seems to help.  We have also found Mouth Kote Oral Moisturizer which you can get through ProHealth at www.immunesupport.com.  It comes in a spray bottle that you spray into your mouth and seems to really help.  You can find lozenges and sugar-free gum that is made for dry mouth, but our doctor said that we are probably better off with plain sugar-free gum.  It is unusual for me to chew gum because I’ ve never really have done it, even as a kid.  My wife, being an ex-teacher, naturally avoids it if at all possible.  Our dentist recommends "biotene" which comes as a toothpaste, mouth rinse, and even an oral balance you place on your tongue. DO NOT THINK THAT ALL YOUR PROBLEMS AND SYMPTOMS ARE CFS: If anything seems unusual or strange, see your doctor and tell him of the symptoms or problems which seem unusual.  Failing to monitor your health, symptoms. etc. can be dangerous or even deadly.  Again, I will use my own experience to, hopefully, help you to understand and do the right thing.  After I had my heart attack, the doctor told my wife and me that I must have had “silent heart attacks” (meaning, we do not feel or recognize them) before because of the severe damage done to my heart.  After I had recovered, I remembered 2 different occasions which could have been heart attacks and didn’t understand.  I have suffered from acid reflux for many years.  Unfortunately, I was too used to having severe chest pain around by breastbone.  On 2 occasions, I can remember that there was something strange about my attacks.  My chest pains came at the wrong time, and I couldn’t remember what I might had done “this time” to cause another attack. If I had taken proper action at those times, I might have never needed a heart transplant.  In other words, I just blamed my problem on the old acid reflux rather than checking out what the problem was.  We can and do the same thing all the time with CFS.  Most regrettable is that most of our doctors take something unusual as just being another problem of CFS.  DON’T EVER ASSUME!
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