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: Are there any reliable treatments for insomnia?
Answered by Dr. Charles Lapp, M.D.
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.
More Q & A's
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
Hyperydrosis on Face and Head - New Chronic Fatigue Syndrome Symptom or Something Else?Answered by Richard Podell, MD, MPH
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This week's question is answered by Richard Podell, M.D., MPH a graduate of Harvard Medical School and the Harvard School of Public Health, has been treating patients with ME-CFS and Fibromyalgia for more than 20 years.
A clinical professor at New Jersey's Robert Wood Johnson Medical School, Dr. Podell sees patients at his Summit, NJ and Somerset, NJ offices.
Q: I am a 68 year old male with progressive CFS since '94. I am now hypogonadal, have idiopathic peripheral neuropathy, Chronic Lymphocytic Leukemia (dx'd 2001, indolent, no treatment, Rai scale 0). Plus I have complete blockage of one carotid artery. My question : After the slightest exertion I have hyperydrosis on face and head with concomitant temp rise to 99.6 from my very normal 98.6 degrees. I am dripping sweat right now. WHY? Any thoughts?
A: Thank you for writing. You've developed a new symptom, and are not sure where to turn for help. My key message is this: while this might all be a flare up of your CFS, it's critical that you and your doctors assume first and foremost that the cause is something else. Ruling out all other plausible dangerous diagnoses should be the prompt priority.
You want your physician to imagine that you don't have CFS, and for arguments sake, that your leukemia is still in perfect control. (Please double check with your oncologist on that.) Make that assumption and then ask what conditions can cause ongoing low gradefever, sweats, and reduced tolerance for exertion?
The list is a long one, but, your internist or family doctor has to act quickly to rule out those that are dangerous--that we can't afford to miss.
For example, a heart valve infection--bacterial endocarditis. Serial blood cultures and an echocardiogram need to be done promptly whenever there's n unexplained fever thats gone on for weeks.
For example, tuberculosis--a chest x-ray and/or a TB skin test is required.
For example, congestive heart failure--where the heart's ability to pump blood is compromised. Again a chest x-ray is needed.
Your doctor knows the list of most common causes. The key is to get the doctor to focus on the fact that this is a change in your normal symptoms AND that until other causes are ruled out you cannot assume this is due to your CFS.
If you have a doctor you know and trust, and most importantly, who knows and trusts you, that's the place to start. The first step is that they take you and your change of symptoms seriously. Or, if you can quickly get to an infectious disease specialist that's a good choice. Your problem might or might not be an infection;but ID specialists are experienced evaluating patients who have ongoing fevers. If you consult with a family physician or internist, all else being equal, see one who still admits regularly to the hospital.
Primary care physicians who don't go to the hospital might be more easily lulled into the false confidence that this is just a passing virus and need not be taken seriously You want someone who has a high index of suspicion for less common but more serious conditions--that you can't afford to miss. Let's hope not, but unless the doctor starts with that premise, then the more serious possible causes might tend to be ignored.
Please let us know what your doctors find.
Richard Podell, MD, MPH
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, Illness or disease.
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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.