May 7, 2007
Dr. Holtorf’s Thyroid Protocol
Q: I've been following some of the writings of endocrinologist Dr. Kent Holtorf in your newsletters with interest. I have ME/CFS along with Hashimoto thyroid disease and on-and-off-again hypothyroidism. I also have recently been suffering for the first time from some serious anxiety and depression. I have been seeing a psychiatrist/psyhchopharmacologist for this, and trying various anti-anxiety and depression drugs as a result.
Dr. Holtorf's approach toward the thyroid sounds like it's worth exploring first, as he suggests dealing with the thyroid before dealing with other symptoms (such as anxiety/depression, I am assuming). My dilemma is in trying to locate a physician, or preferably an endocrinologist in my area, who is familiar with treating ME/CFS patients, while at the same time understanding and able to take an approach similar to Dr. Holtorf's.
I also noticed that Dr. Holtorf seems to be affiliated with the Fibro & Fatigue centers, one of which is fairly close to me (Philadelphia area), although he practices out of California. My question is: Are the F & F centers trained and prepared to deal with the intricacies of the thyroid and endocrinological system, and thus, to use his approach/protocol to treat ME/CFS through the thyroid as he describes? Would they also have the expertise in dealing with the anxiety/depression at the same time? – Scott
A: The Fibro & Fatigue centers certainly should have expertise in dealing with anxiety and depression, as these are not unusual for CFS and FM patients. Whether or not they are experienced with the thyroid protocol is another issue. At the very least, they should be open to exploring it, since Dr. Holtorf is on their staff (albeit in another city). The best thing to do before scheduling an appointment (whether it is with the Fibro & Fatigue center or with any other doctor) is to call, tell them what you are interested in, and ask about their expertise in those areas.
____________________________
Sixty-nine Percent “Cured”?
Q: I read in the last CFS newsletter about this study that apparently cured 69 percent of the patients studied, to the extent that they no longer met the CDC criteria for CFS. I would love to hear more about that, even though I find it really hard to believe. – GG
A: You are referring to the abstract of an article by researchers in the Netherlands indicating that 69 percent were “cured” with cognitive behavioral therapy or CBT ( “Is a full recovery possible after cognitive behavioural therapy for Chronic Fatigue Syndrome?”). We must admit to feeling skeptical also, and note that the abstract also states: “The percentage of recovered patients depended on the criteria used for recovery.” Interested readers may want to purchase the full text of the article from the publisher to better determine how "recovery" was measured.
On the other hand, few would doubt that learning to adapt to a chronic condition can be helpful. See the article by Julie Kelly and Rosalie Devonshire in this issue describing how CBT is used as a tool for reducing stress and its negative effects on health.
____________________________
Ehlers-Danlos Syndrome Treatments?
Q: I have classical Ehlers-Danlos Syndrome (EDS) [which involves a defect in the connective tissues]. Last week, I saw a specialist in pain management with a focus on soft tissue disease at Yale-New Haven Hospital. For the first time since my diagnosis of EDS with chronic pain, I find that the ligaments that hold my hip/pelvis together are stretched fully. My pain is caused by my hip bones not being held together properly, plus chronic inflammation at/near the coccyx (tail bone). My new doctor prescribed an SI (sacro-iliac joint support) belt, sitting on a small diameter open-center inner tube (from a pool store), and purchase of specially-fitted shoe orthotics to deal with my thoracic scoliosis. No one else ever made any treatment suggestions, and I have seen many specialists here in the Washington, DC area. Comments please. And, perhaps this will help others. – Louise
A: We don’t have much experience with Ehlers-Danlos Syndrome. However, it sounds as though your new doctor is trying to make you more comfortable and help you protect your joints. There doesn’t seem to be a standard treatment protocol for classical EDS other than simply treating symptoms. Although, according to the Ehlers-Danlos National Foundation, “Physicians may also prescribe bracing to stabilize joints, [and] consult a physical and/or occupational therapist to help patients strengthen muscles and to teach patients how to properly use and preserve their joints.” Since it seems your physician really wants to try to help you, it is important to let him or her know which suggestions were helpful and which were not, so you can find what works best for you.
You’ve probably already done a thorough search of the Internet for information on EDS, but for others who might be interested, MedlinePlus provides a number of EDS links. And the University of Washington’s Department of Orthopaedics and Sports Medicine offers several self-management tips for EDS patients that you might find helpful.
____________________________
Change Name of Newsletter?
Q: How about changing the name of your CFS HealthWatch newsletter to ME-CFS HealthWatch? This will help promote the name change. – Patrice
A: [ProHealth Founder Rich Carson commented as follows on this and similar letters.] “Despite our intense desire to see the name “Chronic Fatigue Syndrome” change, it is critically important to hear the opinion of all patients on the sensitive subject – by vote or by survey…Even though I hate the CFS name and can’t wait to see it disappear, we need to know what patients want, because in the end, that is what really matters - finding a name that does not offend patients and yet accurately describes/names this illness. ME or ME-CFS is by far the most popular choice with patients so far, based on discussion on the ImmuneSupport.com bulletin board, but I do not want to influence any decision in this regard because as a collective, patients will always know what is best.”
____
Note: This information has not been evaluated by the FDA. It is for generic information purposes only and is not meant to prevent, diagnose, treat, or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.
|
