Is Rhumatologist a CFS doc??

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Nov 30, 2008.

  1. SpecialK82

    SpecialK82 New Member

    I know that rhumatologists treat FM, but what specialty treats CFS?

    I am struggling to find a CFS specialist in my area - what type of doctor are you all seeing?

    The list doesn't look like it ever gets updated - at least for my area :(

    Thanks, Kristina
  2. spacee

    spacee Member

    Boy, that is one tough question. I have been to the Cheney Clinic (20 years ago), an Infectious Disease doc and a pcp. All have helped me some. For instance:

    The klonopin and Kutapressin (no longer available) was Cheney. I still take the klonopin and like it.
    Took the kutapressin for 16 years and when no longer available I went with the Transfer Factors that target EBV and HHV6. They have helped...but I am still disabled (not able to work)

    Infectious disease diagnosed the tachycardia and put me on heart med.

    The pcp allows me to try most anything I ask for like the Marshall Protocol, but nothing has been a big help.

    Those have been what who have helped me. But mostly I read the board and try stuff mentioned here.

    Sorry not of more help. It is so difficult to not live near a good CFS doc. The ones who know a lot seem so few and far between.

  3. kat0465

    kat0465 New Member

    I have seen just about every kind of Dr you can think of, GP,Do, Rheumy,Allergist,Cardiologist, Gyno,Gastro.I found a really Good Dr a few years ago, she is an Internal med Dr.she knows a lot about cfids,and also has done lots for Aids.She kinda treats the Whole Body, but if she thinks that i need a specialist she will send me to one.
    My cousin who was recently Diagnosed by a Rheumy was told that she had such a bad case of fibro that there was nothing she could do for her but refer her to a pain mamagement Dr.which is what all the other doc's she has seen has done, SHe hates the pain mamagement, cause they dont get to the bottom of why she is sick,
    it's a shame how hard it is to get treated with this disease, I feel for you & hope you find a good doc and soon!! Dont give up just keep looking, you can sometimes find fibro/cfids support groups in your area, they usually have a list of good Dr's. Good Luck to you.
  4. PVLady

    PVLady New Member

    I would do a websearch in your city "best doctor for chronic fatigue' I ran the same search using no city and came up with several doctors that really seem to be interested in treating CFS. One was in New Jersey. Below is info from his website. Dr. Podell even refers to Pro Health for a good supplement for chronic fatigue. Interesting...

    Five years ago you could not find any doctors posting like this.

    This info from his website explains his treatment protocol. I may take this to my own doctor (she seem's clueless on CFS). I have a EBV titer of over 8,000! (On the lab slip the normal was below 90).

    His website is below.. (just for info)

    Chronic Fatigue Syndrome Doctors

    Until fairly recently, many physicians believed that Chronic Fatigue Syndrome was in the same class of illness as psychologically-based anxiety or depression. Some still believe that, but almost all CFS experts are now firmly convinced that Chronic Fatigue Syndrome is a physical illness.

    CFS doctors agree that Chronic Fatigue Syndrome’s cause and mechanism remain largely mysterious. When we examine a large number of CFS patients, we find an increased rate of abnormalities of the immune system and metabolism. However, these same abnormalities can also be found among some individuals who don’t have CFS or even those who are healthy.

    So, we don’t yet have a diagnostic lab test that reliably says who has CFS and who does not.

    Many or most cases of Chronic Fatigue Syndrome appear to begin with a viral illness. However, bacterial infections, environmental toxins, and/or emotional distress may also be triggers

    . We are not yet sure whether those who are chronically ill have a continuing infection, or whether immune system, metabolic and neural damage perpetuates itself in other ways.

    Dr. Podell Is Among The Nation’s Leading Chronic Fatigue Syndrome Doctors
    Our office has worked with more than 1000 persons who have Chronic Fatigue Syndrome (CFS), including several hundred with severe CFS.

    Richard Podell, M.D., medical director has lectured about Chronic Fatigue Syndrome to many professional and consumer support groups. He has written articles for Redbook, Family Circle, and Bottom Line Health.

    A clinical professor at Robert Wood Johnson Medical School, Dr. Podell is Principal Investigator for one of the test clinical trials for a Food and Drug Administration approved study of Ampligen, an experimental drug for CFS. (A few places remain available for the Ampligen research study.)

    In 2002, the New Jersey Chronic Fatigue Syndrome Association gave Dr. Podell their medical Achievement Award. Dr. Podell has served on the expert committee on CFS for the New Jersey Academy of Medicine and also for the New Jersey State Department of Health.

    This group recently published a Medical textbook on the diagnosis and treatment of CFS. Dr. Podell also wrote a book on Chronic Fatigue titled, Doctor Why Am I So Tired?. He serves as a medical expert on Chronic Fatigue Syndrome in both New Jersey State and Federal Courts.

    Wendy King, Ph. D., R.N., APN, BC, an Advanced Practice Nurse, is director of research, and also director of behavioral medicine. Dr. King is the administrative director of our Ampligen treatment trials for Chronic Fatigue Syndrome.

    Philosophy: We seek to combine the best of standard drug therapies with natural support for the body’s own healing systems. Since drug treatments, while useful, only partly control symptoms, we try to aid the body’s natural abilities to heal. We evaluate the status of the important healing systems, and remove obstacles to their function. This perspective has a formal name: Functional Medicine.

    How Functional Medicine may support recovery from Chronic Fatigue Syndrome (and also other forms of illness.)

    Many Chronic Fatigue Syndrome doctors believe that a holistic or functional medicine approach adds value to standard therapies by focusing on the body's natural healing systems and their crucial role in resisting and reversing illness.

    The unstated assumption is that mind and body function quite separately—as if each organ within us acts largely on its own.

    However, current science tells a very different story. Mind and body organs and systems act on each other. There is a complex web of hormonal, metabolic and biochemical inter-relations. At a deep level, even such distant organs as the brain, endocrine glands, immune system, gut, and liver coordinate their functions-- almost as if they were one.

    Functional Medicine, we believe, creates added opportunities for healing. This holistic, complementary or alternative approach focuses on ways to strengthen the body's own natural healing systems. Much research suggests that better function for any one part of the healing web also acts to strengthen other parts of the system.

    Confirming The Diagnosis of Chronic Fatigue Syndrome Is Crucial

    Dozens of common ailments can also cause fatigue. Therefore, a main focus of our first long new-patient visit is to be sure that we haven’t missed potential alternative causes of your illness. That’s why we ask you to complete our very detailed case history questionnaire and send us copies of prior lab reports.

    Chronic Fatigue Syndrome Treatments
    Unlike most illness for which there are many approved treatments, no pharmaceutical company has yet sought the Food and Drug Administration’s approval for a medicine for CFS. The two best studied treatments are Valcyte, an anti-viral drug that is FDA approved to treat CMV virus; and also Ampligen, an anti-viral drug that is not yet FDA approved.

    Unlike bacterial pneumonia, which we can often cure with penicillin, we do not have a “magic bullet” to reverse CFS. Nevertheless, there is much we can do to help people with CFS feel and function better.

    The first step is usually to regain a sense of control by reducing the disruptive symptoms that often complicate this disease. These include secondary pain, poor sleep, recurring infections, and secondary depression, nutritional deficiencies, thyroid and/or adrenal imbalance.

    At the same time, work to improve the natural healing systems that we normally rely on to overcome illness. It is of great practical important to identify and remove obstacles to the function of these natural healing systems.

    We discuss our approach to natural healing in the section titled Eight vicious cycles that block Chronic Fatigue Syndrome healing.

    Chronic Fatigue Syndrome doctors also often recommend the following important natural therapies:

    1) A slowly graded program of gradual increasing exercise using the Goldilocks Principle—not too much, not too little, but just the right amount, and

    2) A specialized form of practical psychological support emphasizing coping skills rather than “in depth” psychology. This is called cognitive behavioral therapy (CBT).

    The “goldilocks” exercise and the CBT approach definitely make a difference for most CFS patients. They should be part of almost every person’s treatment program. We discuss these further below in the section Functional Medicine Applications.

    Innovative Chronic Fatigue Syndrome Treatments

    VALCYTE is an anti-viral drug that the FDA has approved to treat cytomegalovirus (CMV). Usually Valcyte is given to persons with AIDS or who have received organ transplants. However, Valcyte seems likely to also be effective for Epstein-Barr Virus (EBV) and for Herpes Virus 6 (HHV-6). Chronic fatigue syndrome physicians suspect that EBV and/or HHV-6 may account for a substantial proportion of cases of chronic fatigue syndrome.

    To learn more about Valcyte treatment for chronic fatigue syndrome HHV-6 Click Here

    PROVIGIL is a fairly new drug used mainly to treat narcolepsy, a central nervous system condition that causes profound sleepiness.

    A significant minority of CFS patients feel more alert with Provigil. A smaller number also report that their exercise tolerance improves. Provigil is relatively safe. Its positive effects are felt within hours, so it’s certainly worth a brief trial.

    BLOOD PRESSURE RAISING STRATEGIES: Many people with CFS have low blood pressure and/or rapid heart rate. These worsen if they stand too long. (We call these “orthostatic” symptoms.) This occurs in part because the volume of blood in circulation is too low. Measures designed to increase blood volume or raise blood pressure often help fatigue and reduce orthostatic symptoms.

    We have two main options for chronic fatigue syndrome low blood pressure:

    Increasing salt and water intake: We can do this by diet, and taking extra salt pills if needed. Or we can augment salt retaining with the medicine Florinef) or with the herb licorice root. Both methods require taking extra potassium.

    Raising blood pressure:

    ProAmatine, a drug that raises blood pressure
    Tyrosine, an amino acid
    Beta blocker drugs are sometimes useful for increasing blood pressure, even though for most people they are used to lower blood pressure
    Ritalin or Dexedrine can raise blood pressure
    Epogen/Procrit–an injection that stimulates the growth of red blood cells
    We have also seen three male patients whose low blood pressure improves for several days after taking Viagra. This has not been reported previously. As with beta blockers, Viagra normally lowers blood pressure, but our patients found the opposite.

    AMPLIGEN is an experimental intravenous drug with anti-viral and metabolism enhancing qualities. Dr. Podell’s New Jersey Chronic Fatigue Syndrome office participated in the Food and Drug Administration approved double blind research program on Ampligen. Ampligen appears to be more effective than placebo. It is still waiting consideration for approval from the FDA.

    Additional Strategies to Strengthen Chronic Fatigue Syndrome’s Healing Systems:
    Test for essential fatty acid deficiencies and supplement when appropriate.

    Evaluate the methylation/SAMe/folic acid/vitamin B12 pathways, which are essential for effective brain and liver function.

    Analyze which vitamins and minerals are sub-optimal and supplement when appropriate.

    Support the mitochondria’s ability to manufacture ATP energy molecules. Options include: Riboflavin, Lipoic Acid, Enada (NADH) phosphatidyl serine, L-Carnitine, Acetyl-L-Carnitine, glutathione, CDP-choline, Coenzyme Q, “adaptogenic” herbs.

    Assess the quality of digestion and the gut’s bacterial and yeast balance.

    Measure the strengths and weaknesses of the liver’s detoxification pathways.

    Biomechanical (body work) therapies: Effective therapeutic massage and physical therapy techniques for FMS muscle pain go by several names- Structural Integration, Janet Travell, M.D.-style Manual Trigger Point Therapy, Myofascial Release and Deep Connective Tissue Therapy.

    Trigger point injections can also help, as can chiropractic adjustment and a podiatrist’s evaluation of legs, feet and gait. Occasionally, acupuncture and laser therapies are useful.

    Energy Therapies: Reiki and magnets are sometimes reported as helpful. Currently, we are studying a system of extremely low dose electrical stimulation to calm down the pain pathways in the spine and the brain.

    Hidden infections and Chronic Fatigue Syndrome: a Current Controversy
    Many CFS doctors, especially in Europe, believe that persons with severe CFS may be ill because of unrecognized infections with atypical bacteria or viruses. These include mycoplasma, chlamydia, Lyme disease and HHV-6. These researchers claim beneficial results from long-term antibiotics.

    Several double blind studies support these claims, but none of these studies, so far, have been large or well-designed enough for us to be sure. We continue to follow this research closely.

    Breaking News on HHV-6 Virus , February, 2003


    At the February, 2003 meetings of the American Chronic Fatigue Syndrome Association, Dr. Joseph Brewer, an infectious disease specialist from Kansas City, reported a double blind study in which he claimed improvement for two-thirds of persons with chronic fatigue syndrome, while persons taking placebo did not improve.

    If Dr. Brewer’s results are valid, then this is the most important treatment breakthrough so far for CFS. Ironically, Dr. Brewer’s study has received little attention so far, perhaps out of fear that it is “too good to be true”. We won’t know for sure until more double blind studies are done to confirm his dramatic findings, or until enough patients try it and report their anecdotal results.

    Dr. Brewer’s formal study focused only on that sub-group of CFS patients who had Herpes Virus-6 found on special culture. However, since HHV-6 can be present without showing up on culture, Dr. Brewer now believes that both HHV-6 positive and HHV-6 negative persons may respond. Dr. Brewer told me that he now treats all CFS patients with transfer factor, and that he believes his results for “all-comers” are just as good as in his study. Of course, the “all-comers” data is anecdotal experience, no longer double-blind.

    Dr. Brewer identified 38 CFS patients who had a positive culture for HHV-6 Virus. Twenty eight received a capsule containing cow’s milk colostrums. The cow had first been specifically primed to make antibodies against HHV-6 virus. Ten patients, the controls, received standard colostrum, without special HHV-6 antibodies. Treatment lasted six months.

    Based on symptom report scores 68% of people treated with anti-HHV-6 colostrum improved by 25% or more. In contrast, none of the “control” patients improved by that much.

    For the HHV-6 treated patients the average symptom score decreased from 76 to 41. The control group’s average symptom score increased from 79 to 81. Natural killer cell function scores also improved in the HHV-6 treatment group from an average of 8 units to 54 units. Natural killer cell function for control patients did not change.

    If Dr. Brewer’s observations are correct, this would be a major breakthrough treatment, at least for persons who have low grade chronic infection with HHV-6.

    One problem: some healthy people also grow HHV-6 from their blood, so the mere presence of HHV-6 doesn’t necessarily mean that it’s making you ill.

    Dr. Podell’s Perspective on Transfer Factor and HHV-6 Virus: Dr. Brewer’s treatment is probably very safe, so pending further data, it’s definitely worth a try. Some patients get a mild flu-like reaction when starting the treatment, but that seems to be worst side-effects. Most (but not all) people with cow’s milk allergy tolerate the colustrum.

    It costs $140 a month. Not cheap, but certainly worth it if the treatment works as claimed. Dr. Brewer feels that a three month trial would be reasonable to judge on.

    The Bottom Line: I suggest investing in a three month trial with transfer factor, especially if your illness began with a flu-like illness, or if you have swollen glands, flu-like aches, sweats, fevers or other infectious symptoms.

    Where to Get Obtain Transfer Factors. Although many companies are selling a variety of products called “transfer factor”, most are not related to Dr. Brewer’s tested product. Two main suppliers use the material that Dr. Brewer specifically tested:

    Immunity Today, 10925 Antioch, suite #100,O verland Park, KS 66210, tel 913-780-2317. The product Dr. Brewer studies is called Formula 560. It’s active for HHV-6 A and HHV-6 B. Immunity Today’s more recent product, Immune Care 64, is active for both HHV-6 and for EBV virus. Since Immune Care 64 costs only minimally more I think it makes sense to purchase the HHV-6 plus EBV product. Contact person is Perry Anderson.

    Pro Health, Inc, 2040 Alameda Padre Serra, Ste.101, Santa Barbara, CA 93103, tel: 805-564-3064 ext. 236. This company sells the identical HHV-6 product as Immunity Today’s Formula 560, but they have added a variety of nutrients and immune stimulating herbs. Pro Health does not have but should soon add the HHV-6 plus Epstein Barr version. Contact person is Dennis Schoen

    Both seem to be reliable companies, sincerely interested in CFS.

    If transfer factor is effective for chronic fatigue syndrome, it might also hold promise for Fibromyalgia.

    Links to Useful Chronic Fatigue Syndrome Websites

    Be Your Own Chronic Fatigue Syndrome Medical Expert Witness in New Jersey
    See our discussion of how to be your own chronic fatigue syndrome disability medical expert witness

    The American Association for Chronic Fatigue Syndrome (AACFS) is a non-profit organization of research scientists, physicians, licensed medical healthcare professionals.

    The CFIDS Association of America is the largest patient advocate and support group for chronic fatigue syndrome in the US.

    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis news service.

    In addition to these websites on CFS, many Fibromyalgia websites are also of interest for people with chronic fatigue syndrome.

    [This Message was Edited on 12/01/2008]
    [This Message was Edited on 12/01/2008]
  5. Larac.

    Larac. New Member

    My rheum has fibro himself and has offices in Havertown, pa, delaware, and exton, pa---He goes through migrianes alot----I have been in his office and seen his partner give him imitrex shots----

    I moved to Reading, pa in May--I am having a big problem finding any doctor----Insurance through state of pa os horrible---

    I travel with the help of my boyfriend now to exton, pa which is 1hr, 1 way on a good day with father use to take me when I lived at home to Havertown, pa which was an hour from their house----

    The visits are worth it in the end---I have been seeing him since 2006--
  6. SpecialK82

    SpecialK82 New Member

    Thanks so much for all the replys. Isn't it irratating that we don't have a specialist dedicated to our illness?

    I have been to many different docs also and they only seem to be concerned with their own narrow area of expertise.

    I will try and do some more web searches as suggested - I would love to see Dr. Poddel but he does not accept my insurance. I'm hoping that I can find an understanding doc that takes insurance. It seems many of the good doctors are very limited in the types they accept if they take it at all.

    Thanks again for the suggestions!

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