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How is Myalgic Encepahlomyelitis treated ?

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Practicing since : 2002
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Hello- I am a 35 year old female, 5'6", 154 lbs, disabled with severe Myalgic Encepahlomyelitis and several concomitant chronic viral infections (herpes 1&2, EBV, etc.) that I know of due to suppressed immune system with ME. I am mostly bedridden but can sometimes make it to the couch to watch tv. With the ME, you lose the ability to maintain homeostasis and I have wild swings from hot to cold as well as frequent low-grade fevers, etc. ME is thought to be caused by a chronic viral infection that damages the XXXXXXX organs, brain, heart muscle, and so forth. Complicated health status as you can see! My question is this: I have always had an extremely sensitive sense of smell and have noticed lately that my normal body odor has dramatically changed; it smells a bit like burning rubber with an underlying sweetish/acrid smell. I have smelled something like this in the past on another individual and I told a friend that he "smelled like death." I have also noticed intermittently a strong similar odor in my urine, though I have no symptoms of UTI and don't eat asparagus. It is extremely disturbing, especially when I am already so ill. I also have an XXXXXXX titer of 1:2560, which has never been explained. I realize this is very complicated and unusual, but if you could give me any ideas at all about the smell I would be extremely grateful! Thank you for your time. -Amy
Posted Sat, 21 Apr 2012 in Infections
Answered by Dr. Robert Galamaga 1 hour later
Hello and thank you for your query.

Your condition is certainly unusual. I will try to provide you with some good ideas and suggestions to address what you are dealing with at this time. ME can also be referred to as chronic fatigue syndrome and I am sure this has been quite a mentally and physically challenging condition to deal with. You are very young and my hope for you is that somehow your body will gain better control over this in the future with medication or supplements, so you can live a happy and full life.

As you know there is no cure for ME, but many treatments are available to help relieve the symptoms. Treatments usually are individualized to each person's particular symptoms and needs.
The first treatment most doctors recommend is a combination of rest, exercise, and a balanced diet. Prioritizing activities, avoiding overexertion, and resting when needed are key to maintaining existing energy reserves. A program of moderate exercise helps to keep patients from losing physical conditioning, but too much exercise can worsen fatigue and other ME symptoms. Counseling and stress reduction techniques also may help some people with ME.
Many medications, nutritional supplements, and herbal preparations have been used to treat ME. While many of these are unproven, others seem to provide some people with relief. People with ME should discuss their treatment plan with their doctors, and carefully weigh the benefits and risks of each therapy before making a decision.

A variety of nutritional supplements are used for treatment of CFS. Among these are vitamin C, vitamin B12, vitamin A, vitamin E, and various dietary minerals. These supplements may help improve immune and mental functions. Several herbs have been shown to improve immune function and have other beneficial effects. Some that are used for CFS are astragalus (Astragalus membranaceus), echinacea (Echinacea spp.), garlic (Allium sativum), ginseng (Panax ginseng), gingko (Gingko biloba), evening primrose oil (Oenothera biennis), shiitake mushroom extract (Lentinus edodes), borage seed oil, and quercetin.

Now as for the odor - again a peculiar concern. There have been reports of disturbance of taste and smell in patients with ME.

Has this odor been apparent to other people in close proximity to you?

If not, then I would consider that there may be a subtle alteration in your smell receptors which is giving you this sensation. With this additional information we can work towards formulating a plan for you. I await your reply.

Thanks again for your query. If you have additional followups regarding this please send them along.


Dr. Galamaga
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