From Our Readers – Comments & Suggestions 04-06-11

‘Seronegative’ Lyme Cases Easily Mistaken for CFS

Re: The research report “Retrospective analysis of a cohort of internationally case defined chronic fatigue syndrome patients in a Lyme endemic area”

[Note: in this study, a doctor selected 209 patients whose Lyme tests had been negative but he still suspected might have Lyme. He treated them with antimicrobials for common tick-borne infections, and it turned out most of them improved enough to indicate they have ‘seronegative Lyme’ (Tick-borne infection that wasn’t detected in a serum analysis).]

I just want you all to know that FM/CFS (even MS) symptoms are… often caused by Lyme disease, a treatable bacterial infection… Even if your doctor has tested you for Lyme and you tested negative, that does NOT mean you don’t have it. I was (falsely) dx’d with fibromyalgia in 2006; I finally got the dx of Lyme in 2009. I had been ill since a summertime “flu” in 2002.

Lyme has the recurring flu symptoms, high pain levels, both muscular and joint pain, chronic fatigue, forgetfulness, brain fog, excessive sweating, and a host of other symptoms. You do not have to have a rash, bull’s eye or any other kind, to prove you have Lyme disease.

Lyme is a VERY controversial diagnosis in the US (and largely ignored in Canada*). Research doctors looking to cash in on new tests, drugs and vaccines are denying this epidemic. Lyme literate treating physicians are the ones to see. Please check out  for information about the disease and to find treating physicians. Also, the documentary DVD “Under our Skin” gives you everything you need to know about Lyme and the controversy surrounding it, both from patient and doctor perspectives. This is a must-see. – F

* Canadian physicians’ general ignorance regarding Lyme and its diagnosis has been recognized at least in British Columbia. See “British Columbia takes the lead! Launching Lyme, CFS, fibromyalgia center of excellence & study by fall 2011.”


FDA Warning – Acid-Reducing GERD Drugs & Magnesium Deficiency

On March 2 the FDA issued a safety announcement to warn the public that sustained use of drugs to reduce stomach acid associated with GERD and digestive ulcers (Proton Pump Inhibitors, or PPIs) can cause deficiency of the essential mineral magnesium. [For information on magnesium deficiency symptoms, PPI drug names, and a link to the FDA alert, click HERE.]


Spreading the Word About a Disease with Symptoms Similar to CFS

Hi! I have fibro and the symptoms that are similar to CFS. I also have a rare disease called Dercum’s Disease which also has many of the same symptoms but comes along with painful lumps and abnormal adipose deposits all over the body. Because it is rare and because doctors don’t know about it, Durcum’s is often not diagnosed and people continue to suffer. Many are mistakenly diagnosed.
I am a group leader of the Dercum’s Disease Support Group. One of the things we try to do is spread the word about Dercum’s so that patients AND medical professionals are aware of it. It’s quite frustrating when you know something is wrong but nobody believes you. So we’re trying!
One good site with information is ( Our one doctor in the US who is actively involved in researching and diagnosing Dercum’s is Dr. Karen Herbst. Her site is

If people want to ask questions about symptoms, treatments or anything else that has to do with Dercum’s, I’d recommend a visit to our support group. We’re 237 people strong now and can validate how people are feeling and help with finding a doctor. Our site is: Thank you for sharing this information!
Dianne Muffett


Karen’s Personal Quest for Better Sleep

[In her Chronic Pain Blog] Karen Lee Richards has written a helpful two-part series of articles on “The Fibromyalgia Sleep Dilemma”, and a post on her own unique struggles with sleep –  “My Personal Quest for Better Sleep.”

She begins…
“I really debated whether I should go on to write this article sharing my own personal quest for a better quality of sleep, which could be considered the third part of the series.  Why?  Because some of what has worked for me is contradictory to the recommendations of sleep experts and I don’t want to lead anyone down the wrong path.  But I’ve always tried to be honest with you and share my own personal experiences whenever possible, so I ultimately decided it was important to continue to do so.” – J


Looking for Dr. De Meirleir’s Hydrogen Sulfide Urine Test Kit

Re: Dr. Sarah Myhill’s 2009 article “Gut Bacteria, the H2S Test & Mitochondrial Dysfunction”

Q: Do you know where I can find a Hydrogen Sulfide (Neurotoxic Metabolite) test kit? ProHealth in North America and Dr. Sarah Myhill in the UK offered access to the kits for informal research purposes in 2009. – H

A: After checking around, we find that the test kits are available directly from the firm that developed the kit – Protea biopharma in Belgium. They have no North American distributor for this product, See


New Insights for the 45%-55% of Us Who Carry Sensitive Skin Genes

According to, “New research has shown that sensitive skin and susceptibility to eczema and dermatitis are genetically inherited. Previously it had been thought that these conditions were a product of our personal environment.” They’ve posted a report based on new research by Dr. Michael Cork, Head of Academic Dermatology at the University of Sheffield Medical School. The article [at] includes research findings and information “to help families minimize the impact of sensitive skin on their lives – helping them to take control.” – A


Praying Dampens Feelings of Anger and Agression, Studies Find

Re: Article “Feeling Angry? Say a Prayer and the Wrath Fades Away”

Prof. Brad Bushman at Ohio State University has found in a series of controlled studies that prayer helps calm study participants (not necessarily in the habit of praying) who have been made to feel angry. After the anger-inducing experiences they were exposed to information about someone who is suffering, and then to think about – or pray for – her for 5 minutes. Those who prayed for her were much less angry & calmer later than those who just thought about her. When subjects prayed they tended to focus on ‘pleading for her well-being’ while those who thought about her tended to focus on their own feelings of sadness and/or compassion.  – S


This Week’s ME/CFS State of the Knowledge Webinar – Show of the Year?

The agenda for the April 7-8 State of the Knowledge webinar was finally published today [April 5]. All of the presentations both days will be webcasted (don’t know about later availability), so people who care about ME/CFS/CFIDS/FM, look over the schedule and tune in if you can! The agenda is at and the free videocast will be at – C


Survey on Pregnancy & IC, aka Bladder Pain or Pelvic Pain

We don’t know enough about pregnancy and IC – and you can change that! If you have Interstitial Cystitis and have ever been pregnant, please answer this survey. That way, we’ll get a better idea of how pregnancy affects IC as well as how to care for IC patients who are pregnant or want to be. Thank you for helping us learn more about IC and how to live well with IC! []
Interstitial Cystitis Association (


Wouldn’t This ‘Energy Booster’ Interfere with Sleep?

Q: How can these two supplements – Fibronol and FibroBoost – support improvements in both energy and sleep? One would think that the main ingredient [algae polyphenol/phlorotannin extract] would keep one awake. Can you explain? – S

A: A very understandable question. The way nonstimulant natural energy-supporting supplements may also support sleep is the same way a healthy well-nourished body with normal energy supply during the day can have the ability to sleep at night. They may actually help a person get in the routine or “groove,” so to speak, of healthy sleep and wake cycles. Hope this helps.


Is It Celiac Disease, or Fibromyalgia?

Q: I have recently been diagnosed with an autoimmune illness called Celiac Disease and find that the symptoms are so similar to Fibromyalgia that I’m wondering if I really have both illnesses or only Celiac. Now, I’m noticing that when the Celiac flares up from my accidentally ingesting gluten, my Fibromyalgia pain increases. If I stay away from wheat, barley, and rye gluten, all my symptoms improve. Needless to say, I’m very confused. – G

A: Celiac Disease and Fibromyalgia share many similar symptoms, and it’s often difficult to distinguish whether a person has one or the other or both. If you stick to a gluten-free diet and all of your symptoms disappear, there’s a good chance you just have celiac disease. On the other hand, if some symptoms improve but others remain, you may have both. You’ve brought up an important topic. Any Fibromyalgia patient who has significant irritable bowel problems, particularly chronic diarrhea, should be tested for Celiac Disease.

This week’s feature story by awareness crusader Julie Wendell on her long search for the cause of her increasing gastrointestinal problems (“My Long Road to a Diagnosis of Celiac Disease”) is a case in point. She has essentially recovered from her Celiac symptoms on a gluten free diet, but still struggles with symptoms of Fibromyalgia (“Julie’s Story: A Young Mother with Fibromyalgia Since 2008”).


Organizing Chemical & MCS Awareness Ed in Schools

May will be Multiple Chemical Sensitivity Awareness month, and  MCS-America (at offers an Awareness Day Kit. Also their April 2011 newsletter (Pg 78) offers some proven ideas for engaging primary & middle school faculty interest & kids’ involvement in MCS education. – W


Note: This information has not been reviewed by the FDA. It is anecdotal and 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.

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