Letters From Our Readers - Q&A Session 02/27/08

Q: I have had Chronic Fatigue Syndrome for many years. My eyes have become painful with a twitch in the left eye. Have you ever heard of this? I am going to try a dose of Doxycillan antibiotic with an antiviral drug. How long should a person stay on the medication if symptoms improve? – vchad1

A: There can be a number of eye problems related to ME/CFS. The CFIDS Association of America has a very good article on the subject: “Visual Dysfunction in Chronic Fatigue Syndrome." Whether or not your particular eye problems are related to ME/CFS, you don’t want to take chances when it comes to your vision. Have your eyes checked by an ophthalmologist to find out what is causing your problems, and what treatments might be available. As to your question about your medication, we cannot answer specific questions about medication dosages and durations. That is a decision that can and should be made only by your own personal physician.

Help For Vertigo?

Q: I suffer with CFS and fibro, but over the past year have developed problems with my equilibrium and have had vertigo spells. I was wondering if there is any help out there for this? – Annette

A: The first step is determining what is causing your vertigo or dizziness. There can be a number of factors; for example, some medications can cause or contribute to dizziness and problems with balance. If you are experiencing dizziness when first sitting upright or standing up, you may have orthostatic intolerance which is not uncommon with ME/CFS. (Two forms that have been linked to ME/CFS are NMH or ‘neurally mediated hypotension’, and POTS or ‘postural orthostatic tachycardia syndrome’.) This CFIDS Association article gives a good explanation of OI and its treatment options: “Diagnosis: Orthostatic Intolerance (OI).” Talk with your doctor about your vertigo and see if together you can discover what is causing it. Then ask your doctor to recommend the best treatment plan for you.

Can Brain Fog Improve?

Q: I often say: "Of all the things this illness has taken from me, I miss my brain the most." Maybe you have done articles on brain fog and forgetfulness, I don't know. But as I get older the brain fog gets worse, it scares me that I forget so many things. I can't spell at times or do arithmetic; and sometimes I can't follow a conversation, especially if the speaker talks rapidly. I forget where I put things. I also put them in very strange places (e.g., ice cream in the pantry instead of the freezer). I know other people also have brain fog with CFS, does anyone ever recover from it or improve as other symptoms subside? I really fear I am a candidate for dementia. – Carol

A: Brain fog can improve but may not go away entirely. It’s important to identify any factors that may be contributing to it and correct as many as possible. Things that can cause or worsen brain fog include:

• Allergies, especially food allergies – Wheat and milk allergies are common causes of brain fog. Most people don’t even realize they are allergic to these foods until they’re tested.
• Reduced blood supply to the brain – Check for possible arteriosclerosis.
• Medications – Many prescription drugs can affect memory and concentration.
• Too much sugar – Excessive sugar in your diet can impair your concentration.
• Multiple chemical sensitivities – Some people are essentially being poisoned by things commonly used in our modern world, such as pesticides, heavy metals, gas fumes, solvents, carbon monoxide, chemicals used in construction materials, etc. All of these things can contribute to brain fog.
• Lack of quality sleep – A sleep study will confirm whether you’re getting enough deep, healing sleep. Sleep apnea and other sleep disorders can seriously affect your brain’s ability to function properly.
• Hypothyroidism – An under-active thyroid will cause brain fog problems.
• Too little physical activity – Although you may not be able to do traditional exercises because of ME/CFS, try to move around as much as you are able, to keep the blood flow moving well.
• Chronic infections and viruses – Treat viral infections aggressively and work to strengthen your immune system with nutritional techniques.
• Nutritional imbalances – Make sure you are getting a good balance of essential vitamins and minerals. Supplement any areas that may be lacking.
• Depression and anxiety – These can certainly contribute to brain fog. If you have symptoms of depression or anxiety, talk to your doctor.
• Chronic pain – A recent study demonstrated that chronic pain can actually damage the brain (“Chronic Pain Harms the Brain”). If you have pain that is unrelenting, talk with your doctor about ways to get your pain under control.

What Does ME Mean?

Q: What does “ME” stand for? You talk about these terms like everyone knows them. Call “me” a patient, but I seriously don’t remember… What words do the letters stand for? The CFS part I remember. The slash in there is confusing, too. Don’t you think it would be better to name a disease with a name that people who have it can remember? – Robyn

A: We apologize for confusing you. Sometimes we talk about something so much, we tend to forget that some people visiting the site may not know what we’re referring to. ME stands for myalgic encephalomyelitis (or the optional, myalgic encephalopathy). While an easier name for patients to remember would be nice, there are solid, well-thought-out reasons for choosing ME. You can read more about those reasons in Dorothy Wall’s excellent article “The Right Name, the Right Strategy, the Right Time.”

Most Accurate Thyroid Test?

Q: Could you please tell me what the name is of the thyroid test that will give the most accurate reading of how your thyroid is truly functioning? I remember reading about it in one of your articles. It is not one of the ones that are usually done. I also remember that it provides information to make diagnoses that otherwise could not have been made. – Kate

A: The thyroid test most frequently ordered by doctors is the TSH (thyroid-stimulating hormone). However, without also testing your free T3 and free T4 levels, there is no way for the doctor to know if your body is properly converting the T4 it makes into T3. The TSH test only tells you how your hypothalamus is working but it does not evaluate what is happening to your thyroid hormones elsewhere in your body, like in your liver. To get the most accurate picture of how your thyroid is functioning, you need to have the TSH, free T3 and free T4 tests done.

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Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, mitigate, or cure any condition, illness, 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.