From Our Readers - Comments & Suggestions 05-06-09
May 4, 2009
After 26 Years Diagnosed with ME/CFS/FM – the Problem was ‘Stealth Pathogens’
I'd like as many people as possible to know about this. I was diagnosed 26 years ago as having CFIDS, and Fibromyalgia… After 3 decades of severe and recurring upper respiratory infections, asthma and bronchitis I was almost always ill. Each time getting worse and worse, weaker and weaker. My life passing before my eyes.
After 9 consecutive months in the last year of being very very ill with nervous system symptoms, blinding headaches, spine pain, severe coughing, bronchitis, etc. I pleaded with my doctors to not guess anymore and quit bombarding me with antibiotics. I sought out a Pulmonologist who ran pulmonary function tests, a high resolution MRI and told me she thought I was on the road to recovery, as all the tests came back negative. She also ran a gram stain - negative.
I then went to my 3rd Infectious Diseases doc. After being off antibiotics for about 3 weeks I asked him (as I had the other Infectious Diseases docs) to run a blood culture. Actually grow the blood in a Petri dish and see what shows up. This doctor FINALLY did it. It was returned with 3 forms of walking pneumonia that have gone systemic.
Many Doctors I saw were in a real box, not delving deep enough because I did not run a fever.
• I hurt as badly as I do because the infection is in my joints,
• I have asthma and chronic respiratory infections because it's also in my lungs.
• I have neurological infections because it's in my spinal column and brain.
The pathogens are most often missed as they are very small, not shaped like a normal cell but are referred to as “stealth pathogens.” They cross the blood brain barrier, they are also gram negative so they don't show up in a gram stain. The pathogens I refer to are Mycoplasma Pneumoniae, Chlamydia Pneumoniae, and Chlamydia Trachomatis.
Left untreated these bacteria can cause debilitating symptoms that mimic MS, CFIDS, Fibromyalgia, and Guillain-Barre Syndrome or other autoimmune diseases. I feel that more people need to know about this. I also think more physicians need to be running these cultures vs. bombarding one with antibiotics when they do not know what pathogen they are treating. PLEASE Google these bacteria. Educate yourselves about them and ask for blood cultures. My Doc says 1 to 3 years on Azithromycin. But it's HOPE and it's also validation. I won't get 26 years of my life back but I may feel better. WOW! - K
Note: See www.cpnhelp.org/cpnbook for more info on these pathogens, and “Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia - An Opinion, by Patient Advocate James Kepner”
Glasgow Low-Dose Naltrexone Conference Summary & Videos
Here is a link to a report and videos from the LDN Glasgow conference http://glasgowldn2009.com (held April 25, 2009) - C
Note: LDN research appears to be addressing many conditions including multiple sclerosis & other autoimmune diseases, FM/ME/CFS, cancer, fertility/pregnancy, immune activity and oxidative stress. See for example “Inexpensive drug naltrexone appears to relieve fibromyalgia pain, fatigue.”
Advice on Rest, Pacing & Stress in ME/CFS
Re: “Rest, Pacing and Stress: An ME/CFS Expert’s Advice,” from Dr. Sarah Myhill’s free online book, “Diagnosing and Treating Chronic Fatigue Syndrome.”
• What a wonderful and informative article. - I have suffered with CFS for nearly five years, being in the severe to very severe level much of the time. It amazed me how Dr. Myhill hit it right on the nose regarding the body's ability/inability to function. I agree that rest and common sense regarding just how much our bodies and minds can take is crucial.
All suggestions given in this article aid in easing the life of a CFSer... I have Bible Study at night and I am currently involved on another committee with my church that is holding meetings one night a week. By the time evening comes, it is nearly impossible to function and I drop into bed afterward with that feeling that I am coming down with a nasty case of the flu. Everything hurts.
I agree 100% with the recommendations here and couldn't have stated it better. Thank you to all medical researchers and staffing who are working diligently to find causes and cures to this debilitating disease…. – BB
• Good Article! – [Regarding free sources of audio books mentioned in the article], I would like to add that in the U.S., many public libraries now participate in "NetLibrary." Once you sign up at your local library, you can go online and select from hundreds of eBooks and eAudiobooks in many categories. The books can be downloaded to your PC or MP3 player. This is a fantastic service! It's so relaxing to lie down and listen to a book. Normally, my eyes get tired when reading and I get tired just holding a book but this is effortless once set up. – VW
Mistaken Diagnosis for 20 Years
I was diagnosed with fibromyalgia and CFS and suffered for 20 years. In the past 2 years I have been symptom free. I discovered I am celiac and had stopped eating any foods with gluten. If only I had known it was that easy!
I have no more:
• Muscle pain
• Joint pain
• Sleep disruption
• Irritable bowel or bladder
• Carpal tunnel syndrome
• Itchy hands and feet
And I have decreased the medications I take daily from 7 medications to 2 (the ones left are for unrelated problems). I hope this helps someone. - LM
Insights for Those Coping with Celiac or “Gluten Encephalopathy”
Just a little gluten is damaging in Celiac disease. And even though I don't have my fingers on the research for gluten encephalopathy [See “The Gluten Syndrome: A Neurological Disease”], chances are a little gluten is very bad there as well. My experience is with 9+ years in a gluten intolerance group… In reality very, very few celiacs are able to be 100% gluten free starting the day following their diagnosis.
As with everything in life, there is a learning curve to gluten free lifestyle. And as with every learning curve, there is considerable energy expended getting to the top of the curve. But once you are on top of it all, like anything else, gluten free lifestyle becomes second nature. Remember how overwhelming it was when you first sat behind the steering wheel of a car? But now you probably drive on autopilot. Same with GF diet…
Please also consider: if you believe you have some form of gluten-induced autoimmunity, you owe it to yourself to have a complete thyroid panel (free T3, free T4, thyroid antibody panel - 3 AB tests), adrenal antibodies, and hematocrit done. It's not uncommon to find subtle endocrine abnormalities or anemia that complicate the energy drain, when gluten intolerance is part of your package. Then again, many people find that once they are on GF diet & their immune system is not constantly draining resources due to gluten issues, there is a more focus, more energy to commit to everyday life.
A great resource is Dana Korn's book, Living Gluten-Free for Dummies [see also “UK version”]. Lots of info, highly readable, not overwhelming. Also - consider attending a local Gluten Intolerance Group (GIG). Local support is very helpful in terms of socializing, and tips for local shopping/dining. - S
Note: For one state-by-state listing of gluten intolerance groups in the U.S. (in this case, all members of the Gluten Intolerance Group of North America), click here.
If You’re in a Relationship with Someone Who Has This Illness
The best advice I can give someone dating someone with an illness is Never Doubt Them. Unfortunately you cannot physically see pain and this causes doubt. Don't let the doubt get to you. The man I married was fully aware that I was ill and I explained so much to him and he read books and educated himself, but then he started to doubt me because sometimes I seemed perfectly healthy.
I'm not much of a complainer so I didn't always announce I was in pain and sometimes I would push myself so we could spend time together but sometimes I just couldn't. Our marriage ended because …he wasn't truly prepared to deal with someone with health problems. …Trust when she [or he] says she's not up to something and be prepared for disappointment when you make plans and then she cancels because she just doesn't have the energy or she's in too much pain. All you can do is be there and let her know you care. And don't let her push herself, nothing is worth the suffering it causes. - S
“Best News Video on Lyme” is Really Good
I had a positive lab test for Lyme last fall, but have not done much to specifically treat it or address it. I have little inclination to do long-term antibiotic therapy, but I haven't ruled it out. What has created an impasse for me is that I'm haltingly trying to better understand Lyme and possible treatments without having a lot of confidence in my cognitive abilities to do so.
Tonight I came across a news segment on Lyme that may be a catalyst for me to get started on developing a game plan for myself. This video sorts out some of the information I've come across in bits and pieces and puts it in a more cohesive, comprehensible framework that I found quite helpful. I came across this video on the following website: lindaslymediseasejournal.blogspot.com
In the upper right hand side, there will be a link you can click on entitled: "Best News Video on Lyme I Have Ever Seen!" Once you click on it, it will open up in Windows Media Player. It's about 20 minutes long.
I've thought a lot about my Lyme diagnosis since receiving it last fall. I currently believe that I have both CFIDS and Lyme, with Lyme probably being a significant contributing factor to my host of CFIDS symptoms. But who's to say what the reality is? I don't know, and I don't really care. I just want to be well, or at least get better. Perhaps it will happen once I start treating the Lyme.
I'm posting this here in case others are finding themselves in a similar situation as mine; wanting to understand Lyme better, but not knowing where to start. – W
Looking for Free E-Book on ME/CFS
Q: There was a link for a free e-book in your newsletter or website by a female Dr. in the UK. I cannot find it. Help please - S
A: The free online e-book you mention is the frequently-updated Diagnosing and Treating Chronic Fatigue Syndrome, by Dr. Sarah Myhill, MD. There’s an index on pages 4, 5, and 6. Dr. Myhill is a common-sense doctor dedicated to freely sharing everything that she believes can help those with ME/CFS. Her website, with hundreds of articles listed by subject alphabetically (click on “articles”), is at www.drmyhill.co.uk.
Chemical Exposure, Mold Exposure, ME/CFS, and Environmental Medicine
Re: “Is there an association between exposure to chemicals and chronic fatigue syndrome? Review of the evidence”
Without going into great detail I think that Dr. Baraniuk's work on cerebrospinal fluid in patients with CFS, Fibro and Gulf War Syndrome has confirmed that the diseases have the same basic patholphysiology. Many of his patients had symptoms of Chemical Sensitivity as well. They often have mold exposure at home or work as the source of the condition initiation. Other causes can be pesticides, and other chemical exposures that are high enough to tip the patients over, to damage the immune, endocrine and autonomic nervous system.
This is why the effective treatment lies in discovering the etiologic agents if possible and removing them from the patient’s life. In the case of mold exposure this may mean moving and getting rid of one's contaminated clothing, for example. Those of us who have recovered from these conditions and are doctors wish to impart upon those of you who want to get well - that it is possible and that the organizations should work more closely for patient benefit - yet I see little congeniality thus far.
Physicians who practice in this way may be found at the American Academy of Environmental Medicine website (http://www.aaem.com)... - Dr. Lisa Nagy, MD (firstname.lastname@example.org for comments, questions)
Dr. Bested’s Research Finding that Probiotics Improved Anxiety in ME/CFS
Re: “Randomized, double-blind, placebo controlled pilot study of a probiotic in emotional symptoms of CFS”
Could you provide a link to this Canadian TV news article – “Probiotic may ease fatigue syndrome anxiety” - on Dr. Alison Bested’s finding that taking a daily probiotic (Lactobacillus) supplement increased tryptophan levels in the brain, which in turn improved anxiety in patients with ME/CFS? - AN
Summer Session of Bruce Campbell’s Online CFIDS & FM Self-Help Program - Sign Up Now
The CFIDS & Fibromyalgia Self-Help Program is currently accepting signups for the summer session of the CFIDS & FM Self-Help Course. The course, which begins June 8, is a 6-week e-mail discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia [voted one of the top 5 most helpful books in last month’s reader poll] is $30. Visit our website to learn more and to register: http://www.CFIDSselfhelp.org.
We offer a limited number of partial scholarships for low-income patients wanting to take our course. The deadline for scholarship applications is May 15. For more information, see: www.cfidsselfhelp.org/online-courses/scholarships and please read the instructions carefully. - Bruce Campbell, Director CFIDS & Fibromyalgia Self-Help Program
Update on Rik Carlson’s Landmark ME/CFS/FM Film “Invisible”
I wanted to update you on the development of our film "Invisible." All of the materials, the artwork and the master copy of the film, are with the company that is making duplicates and doing the packaging. It is our expectation to have it ready for our May 12 event in Vermont. Any person or group wishing to be on the list for the DVD can read about it and sign up at www.vtcfids.org/invisible.html – Rik Carlson, Vermont CFIDS Association President
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, 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.
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