Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
Dr. Lucinda Bateman is a specialist in ME/CFS. Since opening her Fatigue Consultation Clinic in 2000, she has treated over 1000 patients.
Ask the Doctor: How do I know that I really have chronic fatigue syndrome?
Answered by Lucinda Bateman, MD
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.
More Q & A's
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.
What Are Your Favorite Treatments for ME/CFS?Answered by Dr. Richard Podell
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Q:... What are your favorite treatments for ME/CFS?
A:... There are two levels of treatment. The one we understand best is how to deal with the complications of CFS including poor sleep, fibromyalgia pain, secondary depression, physical deconditioning, negative thinking, poor social support. An experienced and sympathetic doctor can do a lot of good in these areas with fairly standard and well accepted treatments. Specialists (of which there are only a handful) will likely do better than non-specialists.
The next level is how do we actually treat the underlying disease? As you know there are no approved treatments. We don't even know for sure if some, all or almost none of our patients have an active viral infection that could be treated with antivirals.
We have some possible but not proved partial treatments that I explore with selected patients.
These approaches include:
1. Antivirals, if Epstein Barr or HHV6 or CMV titers are very high. I prefer to use Valtrex or Famvir over Valcyte. Even though Valcyte is probably stronger, it's much more toxic and very expensive.
2. It might make sense to add an immune boosting product such as AHCC (a shiitake mushroom derivative) to the antiviral or to use this on its own. I've just started using this.
3. There's considerable evidence that there's inflammation in the brain in many CFS/ME patients.
There's a fair number of medicines and herbs with anti-inflammatory effects on glial immune cells of the brain. Low dose naltrexone is one. Potentially, the antibiotic Doxycyline is another. Various herbal products have anti-inflammatory effects e.g. curcumin, green tea, panax Ginseng and others.
Low dose naltrexone has two double blind studies supporting its use in fibromyalgia, but has not been tested for chronic fatigue. Doxycyline has no studies for CFS/ME or fibromyalgia but has some favorable studies with early rheumatoid arthritis. So far as I know none of the herbs have data on CFS/ME.
The virtue of low dose naltrexone and the herbs is that they are very safe.
Doxycyline is not perfect but as drugs go is relatively safe.
One anti-inflammatory that has one good double blind study supporting its use for CFS/ME is rituximab. But, this immune system suppressing agent is very toxic. Until we have further studies, I don't use it, although a few physicians are using it and claiming benefit, for example, Dr. Andreas Kogelnik in California.
Another approach is to improve the function of the energy pathways within mitochondria. A combination of pycnogenol and nicotimamide riboside improves mitochondrial function in rats. But human data is minimal. Again, these are likely to be safe.
We also screen for repairable metabolic abnormalities including the MTHFR folic acid mutation, which is quite common. We check for low coenzyme Q, low carnitine, magnesium, zinc and other nutritional metabolic factors. If abnormal we treat.
- Dr. Richard Podell
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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.