Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
With over 35 years of experience treating ME/CFS and FM patients, Dr. Lapp is an internationally recognized expert in the field.
Ask the Doctor: Do I have to live the rest of my life like this?
Answered by Dr. Charles Lapp
Q: Do I have to live the rest of my life like this?
A: ME/CFS is considered a chronic illness, but longitudinal studies suggest that 17-64% of adult PWCs improve, less than 10% fully recover. The improvement rate is even better for adolescents with ME/CFS. The current standard of therapy is to treat sleep and pain issues first, then address co-morbidities or other health issues.
Dr. Bruce Campbell and I agree (TreatCFSFM.org) that it is best to assume the worst at first, and work toward improving. PWCs seem to do best when they accept the illness and adapt to it; pace their activities and take frequent rests; manage sleep and pain first; then address co-morbidities and other health issues. As physicist Steven Hawking once remarked, “However bad life may seem, there is always something you can do, and succeed at. While there's life, there is hope.”
More Q & A's
How do I know that I really have chronic fatigue syndrome?Answered by Lucinda Bateman, MD
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Q: How do I know that I really have chronic fatigue syndrome and that we’re not missing a deeper cause?
A: This is always an important question. When a new patient comes to my clinic we do our best to look for a “deeper cause” as well as conditions that may have overlapping symptoms, and treat them adequately. Then, when satisfied we have the done the most reasonable assessment possible at that point in time, we enter a management mode for 6-12 months in which we try to minimize disabling symptoms.
But it is always important to re-investigate new or changing symptoms, and I always appreciate input or a “fresh look” from another specialist periodically. Many illnesses evolve slowly [multiple sclerosis or myelodysplastic syndromes, for example] or only periodically exhibit symptoms, so they may not be evident upon initial workup. I like the combination of an attentive primary care provider and an ME/CFS specialist, both thinking diagnostically and comparing notes over time.
Are there any reliable treatments for insomnia? Answered by Dr. Charles Lapp, M.D.
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Q: Are there any reliable treatments for insomnia?
A: Most experts agree that sleep disruption is the one symptoms that should be addressed first. Sleep allows the tired achy muscles to recover; and lack of sleep increases pain and fatigue.
There are many ways to approach insomnia, starting with good sleep habits, especially winding down, choosing a schedule and fixed wake time, aiming for 8-10 hours sleep per night, and avoiding TV and tablets at night. Then an over-the-counter remedy may be helpful such as diphenhydramine (Benadryl, Tylenol PM or Advil PM), doxylamine (ZzzQuil), melatonin, or an herbal sleep aid.
Next, consider non-hypnotic medications such as eszopiclone (Lunesta), zaleplon (Sonata), or ramelteon (Rozerem). If these are insufficient, then a hypnotic agent such as zolpidem (Ambien) might work, but is associated with many more side effects. Doctors will sometimes prescribe benzodiazepines such as clonazepam, temazepam, lorazepam, etc., but these can be habituating and at higher doses may actually interfere with sleep.
If these don’t work, then I recommend consulting a sleep specialist. So the answer to your question is that there are good treatments for sleep, but none that reliably work for everybody.
Why is the MTHFR gene important?Answered by Dr. Benjamin Lynch, ND
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Q: Why is the MTHFR gene important and what should I know about MTHFR mutation?
A: If your odds of winning the lottery were 1:2, would you buy a ticket?
Most likely right? 50% odds are quite good!
Now let's switch that around.
If you had a 50% chance of not being able to utilize folic acid very well, and in fact, did more harm then good, would you continue to take it?
45% of the population here in the USA have a defect in one of their genes, called the MTHFR gene, which reduces ones ability to utilize folic acid.
If folic acid doesn't get transformed properly into the body's most active form of folate, called 5-methyltetrahydrofolate (5-MTHF), then it can clog up your biochemistry causing a vast array of negative issues.
This MTHFR genetic defect especially affects Hispanics, Chinese and Italians. These three ethnic groups have a 70% reduced ability to produce 5-MTHF.
If you are not able to produce 5-MTHF from folic acid, then you won't be able to lower your homocysteine very well, reduce histamine levels, sleep well, carry a baby to term without birth defects, be calm and focused or eliminate cancer forming estrogens.
This is only a partial list.
That's pretty serious.
Does having the MTHFR genetic defect ruin my ability to live a long healthy life?
Toss out your folic acid supplements and instead obtain ones that contain forms of folate that your body can use. Look for 5-MTHF and also calcium folinate. These two forms of folate are readily used by your body and get right to work. Those with MTHFR genetic defects need more 5-MTHF than calcium folinate; however, both are important, especially if there is a B12 deficiency or methylation block (more on that some other time).
NOTE: It is very important to take B12 as methylcobalamin when taking L-5-MTHF. If taking just 5-MTHF without B12 as methylcobalamin, then the 5-MTHF may get 'stuck' and not do anything for you. Your body needs both to work properly.
If your family has a history of cardiovascular disease, mental disorders, cancer, chronically ill, autoimmune disorders, autism, down syndrome, depression - then the likelihood is very high that you, your parents and your relatives have one or more defective MTHFR genes.
Test for the MTHFR genetic defect. How? Consider testing through your doctor. Ask your doctor to order the MTHFR genetic test through Spectracell Labs, Molecular Testing Labs or 23andMe.
Eat leafy greens.
Learn all you can about how to be proactive about this very common and very potentially damaging genetic defect. If your doctor doesn't know about it, they need to. Learn more at www.MTHFR.Net and also read our other articles here at ProHealth.
If you do nothing and ignore the possibility - yes - absolutely.
However, if you are proactive, test for it, avoid folic acid, supplement with 5-MTHF and calcium folinate, eat leafy greens and do what it takes to live healthfully, then having the MTHFR genetic defect is not an issue at all.
Being proactive here is what is needed.
There is no reason to be scared getting tested for the MTHFR genetic defect.
There is every reason to be scared if you choose NOT to test for it.
Be informed and take charge of your health.
Dr. Ben Lynch, ND
Benjamin Lynch, ND received his Cell and Molecular Biology, BS from the University of Washington and his ND from Bastyr University. His passion for identifying the cause of disease directed him towards nutrigenomics and methylation dysfunction.
Currently, he researches, writes and presents worldwide on the topic of MTHFR and methylation defects. You may learn more about Dr Lynch and his work at www.MTHFR.Net. Dr Lynch is also the President & CEO of www.SeekingHealth.com, a company oriented towards disease prevention and health promotion. He lives in Bothell, WA with his wife, Nadia, and three boys, Tasman, Mathew and Theodor.
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Note: This information has not been reviewed by the FDA. It is generic, is not intended to prevent, diagnose, treat or cure any illness, condition or disease, and is not meant to replace the personal attention of a medical professional.