Finding a Support Group?
Q: I have ME/CFS, reside in Nothern NJ, and am looking for support groups in Essex county, Bergen or Hudson county. – T
A: You may want to visit ProHealth.com’s support group directory (http://www.prohealth.com/community/index.cfm), select either Fibromyalgia or CFS/FM, and search. Some groups’ names include the county, some a city, and all list a zip code, which may help you home in on the nearest group. We didn’t find a group in the three counties you mention, but did find one in Union County just to the south of you. The contact person for this group is Lillian Aragones, at http://community.eons.com/groups/group/fibromyalgia-support-connection. She may know of another group closer to you, or put you in touch with members who reside near you. Also, you may want to post a notice in the database indicating you are looking for others in your area to start a support group.
Here are a few additional suggestions that might help you locate a group near you:
• Call local hospitals and ask if they know of any support groups. Some groups meet in hospitals and also some hospitals keep a list of various support groups in the area.
• Ask the doctor who is treating your FM/ME/CFS if he knows of any support groups.
• Some local newspapers publish a weekly list of support group meetings in the area. If yours doesn't, it still can't hurt to call the newspaper's Health editor to see if she knows of any.
• Call the local office of the Arthritis Foundation. They often sponsor FM support groups and some offer training for people who want to start and lead a support group. If they don't have one, they may know of one in the area.
• Contact other support groups in your state to see if they know of a group in your area.
• Check Meetup.com (http://www.meetup.com) for a support group and/or others in your area who are also interested in finding a group.
• Ask for help finding a group on ProHealth’s ME/CFS & FM Message Board (http://www.prohealth.com/fibromyalgia/blog/boardhome.cfm). There’s a good chance you’ll be able to connect with someone else in your area.
Finding or Educating a Doctor?
Q: If you know of any medical doctor in Birmingham, AL, who specializes in chronic fatigue syndrome I would appreciate it. I am now using Dr. Teitelbaum's protocol and praying it works, but would like to have a doctor who I don't have to educate about all this if possible. I am trying to educate my current one; they are trying but I am discouraged at the moment. – Dawn
A: It can be difficult to find a doctor who is even knowledgeable about ME/CFS. Doctors who specialize in it are few and far between. Check out “Choosing a Doctor” from our new "ME/CFS 101" section for some tips on how to go about finding a doctor in your area.
You deserve a pat on the back for taking charge of your own health care, educating yourself, and trying to educate your doctor. Since your current doctor at least seems willing to learn, if your circumstances permit, you might want to consider traveling to see an ME/CFS specialist who could help you set up a treatment plan and then consult with your regular doctor for your ongoing care.
ME/CFS/FM Psychologist in Maryland?
Q: My husband has had ME/CFS and FM for several years and seen a lot of doctors for consultations. However, we need an internist that understands CFS and can be comforting when he is going through a spell. Our best one moved away, and we have no one to call or visit when needed. We live in Columbia, Maryland. My husband says he saw the name of a psychologist who specializes in CFS patients on one of the CFS sites. Would you know where he saw it and who it is? He is suffering more and more anxiety in the last year. – I K
A: Co-cure's Good Doctor List shows a number of doctors who see ME/CFS/FM patients in Maryland ( http://www.co-cure.org/USA_MD.htm). If you'll scroll down to Columbia, you'll find contact information for psychotherapist Eugenie Connall.
Fighting Viral Infections?
Q: Is there any data about treatment of recurring viral pleurisy (lingering for over 4 months), as well as viral salivary gland infection in CFS patients? My doctor believes I have Coxackie B virus, but says there is no treatment. I've been suffering from CFS for 10 years and wasn't diagnosed until 2 years ago by Red Labs test panels. I have abnormally high Rnase, NO, elastase, very low NK cells. Is there anything that could help fight viral infections? Or is it already my "terminal illness" and I should prepare for the worst? I am 58 years old. – N
A: It's definitely not time to “prepare for the worst.” And you're certainly not alone when it comes to viral infections and ME/CFS. Coxsackie B enteroviruses have repeatedly been implicated as agents associated with ME/CFS, as have a number of other viruses.
Dr. Martin Pall, PhD, has been working on the Nitric Oxide Cycle theory, which appears to fit your situation and shows a great deal of promise. He proposes that viral infections as well as other significant stressors can increase levels of nitric oxide (NO) in the body. (You noted that you have an abnormally high NO level.) According to Dr. Pall, “…nitric oxide, acting via its product peroxynitrite, a potent oxidant, acts to initiate a biochemical vicious cycle…This cycle, which we now call the NO/ONOO- (pronounced no, oh no!) after the structure of nitric oxide (NO) and peroxynitrite (ONOO-) is based on many well documented biochemical mechanisms, and the combination of such mechanisms is a complex vicious cycle which can propagate itself over time, producing chronic illness.”
You can read more about Dr. Pall's theory in “Nitric Oxide Theory.” He has also developed an antioxidant treatment protocol designed to break the NO/ONOO- cycle – “Antioxidant Suggestions For Down-regulation of the NO/ONOO- Cycle”. ProHealth has all of Dr. Pall's recommendations available in our general store (https://www.prohealth.com/shop/). Just do a search for Dr. Pall and they will come up.
Specific Carb Diet?
Q: I had a flare up of IBS in the new year and my doctor suggested I go on the Specific Carbohydrate Diet (on many sites on the Internet and also in the book Breaking the Vicious Cycle). Within 4 days, I noticed positive changes regarding my IBS symptoms. And within 2-3 months on the diet, I noticed positive changes regarding chronic fatigue. I have now been on the diet religiously for 6 months and I have energy, stamina and endurance which I haven't had in years. (Although I am still cautious about my energy envelope).
I haven't been bothered with brain fog for months. My sleep at night is much improved. My need for rest in the day is much reduced. I wonder if indeed I had Chronic Fatigue Syndrome or whether the crisis, which started it in September 2008, worsened everything, including my gut and digestive process. (I had always – although not consistently – had some digestive issues.) Was my body overburdened by trying to digest food which was not digestible for my system? And is my digestive system now healing?
Only 2 things have changed: the diet which I began in February and regularly practicing meditation (at least 3 times a day for a minimum of 20 minutes a time), which I began faithfully towards the end of April. However, by that time I had already noticed many improvements, which I'm sure is due to the diet. – Jenny
A: Essentially this diet excludes carbohydrates other than fruits, honey, properly prepared yogurt, vegetables and nuts. It specifically excludes gluten-containing foods. We asked Dr. Kristi Wrightson – our consulting Naturopathic Doctor specializing in nutrition and chronic disease – about the diet. Following is Dr. Wrightson's thinking on the subject:
I have seen the specific carb diet work. It can be really useful for people with IBS, especially in the acute phase of their disease. It basically advocates a very whole foods-based diet without the use of any processed foods or sugar. The reason most people are successful on the diet is that it reduces inflammation in the gut and allows for proper digestion (which we know can influence a whole host of symptoms).
Typically the people who have the most success are the ones who have undiagnosed food allergies, and when they reduce their intake of these items they have decreased symptoms.
It is a hard diet to follow, so compliance is a big issue. Also, occasionally I see someone who does not react positively to the diet. Sometimes this is because they could have an allergy to one of the components that are ‘legal’ on the diet (fermented cheeses, yogurt, some fruits, etc).
Most of my comments end with “consult your doctor,” and for anyone considering such a diet, this is not an exception. It is often hard to discern what is causing a symptom and how to treat it without the help of someone to aid you in this matter. If you do not have a physician who is trained in treating chronic conditions through diet and supplements, these websites can help you find a doctor in your area:
http://www.naturopathic.org – to find a Board-certified naturopathic doctor
http://www.acam.org – to find a medical doctor focusing on integrated holistic care
Dr. Wrightson answers selected questions about health and nutrition as one of the experts in ProHealth's new "Ask the Experts" feature. You can visit the ProHealth.com home page (http://www.prohealth.com/index.cfm) to see the current question and perhaps submit a question of your own.
Note: This information has not been evaluated by the FDA. It is generic 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 health support regimen without researching and discussing it in collaboration with your professional healthcare team.
Finding a Support Group?