XMRV?

People with Chronic Fatigue Syndrome (CFS,) also known as CFIDS or ME, are excited about studies showing a possible connection between that disease and a newly discovered retrovirus called XMRV. Some of the studies have shown a high correlation between people who have that disease and XMRV, but others haven't been as conclusive and all the results aren't in yet.

The good news is that more scientists are taking the disease seriously instead of claiming that it's 'just' psychosomatic. The bad news is that even if a definite connection is found, it will take a lot more time to discover a cure.

Many years ago I read a study showing that broken bones from skiing accidents healed faster than identical breaks caused by car accidents because the healing was influenced by the attitudes of the patients. In other words, broken bones are psychosomatic. I wouldn't be surprised if someday scientists establish a link between all illnesses and people's thoughts and emotions. However that wouldn't alter the fact that diseases are real and caused by viruses, bacteria, etc.

It's difficult enough for people to live with debilitating illnesses without being told the conditions are "all in your head" and they aren't really sick at all.

Even if researchers aren't able to find a cure for CFS it will be a great help to people who have it if the XMRV virus is definitely proven to be a cause.

My CFS Journey Part 6

Years after what I mentioned in my last post a doctor wanted to give me Hormone Replacement Therapy because I was at risk for osteoporosis but all those meds had inactive ingredients I was allergic to. Finally he discovered an injectable form of estrogen and one brand of progesterone pills I could use. I got the injection, but when I tried to fill the prescription for the pills the pharmacist said they had been discontinued that same week.

I had horrendous side effects for nearly eight months. Besides having to go through menopause all over again with much more severe symptoms I was constantly getting cramps in my hands, feet, and legs that kept waking me up at night. It was a horrible experience.

But at the end of the eight months my CFS symptoms had disappeared!

That was nine years ago and since then my energy level has been perfectly normal, although I still have all the allergies and have gotten a few more. I haven't been tested again for mono so I don't know if that virus is completely gone from my system or not.

Last year my allergist had me try eating the foods high in sulphur and within two weeks the CFS kind of fatigue had returned mildly, so apparently I'm not completely over the disease. Obviously I'll never eat those foods again. But otherwise, except for the allergies, I've been fine.

No doctor can figure out exactly why and I'd like this to make sense, but I'm extremely grateful for the best health I've had in decades.

It's not likely that doctors will give other women estrogen shots without progesterone and obviously men can't be given those hormones so, unfortunately, what helped me so dramatically probably won't help many other people. But perhaps hearing about it could help researchers figure out what causes Chronic Fatigue Syndrome and what can be done to help others who have it. I'm sharing my story in hopes it will get to someone who can use it to make a difference.

My CFS Journey, Part 5

After 12 years I finally got out of the HMO and found a doctor who actually believed I was sick. He gave me an anti-viral drug, and it didn't seem to do anything but give me terrible side effects. Perhaps my symptoms improved slightly, but not for long. Two years later another doctor insisted on giving me the same drug again and that time it did permanent neurological damage, giving me a learning disability, but still didn't help with the CFS. At least those doctors didn't think I was crazy, so that was an improvement. And their tests showed I still (or again?) had mononucleosis.

Because I'd had multiple cortisone injections in my neck near the time I first became sick I thought there might be a hormone-related problem, but tests showed my cortisol levels were normal. I hoped when I reached menopause my symptoms would improve, but that made no difference at all.

But in my next post I'll share what did make a tremendous difference. Unfortunately it's not an option for many people.

Chronic Fatigue Syndrome

     I suffered from Chronic Fatigue Syndrome for nearly 30 years, and, yes, it is a real illness. If people with that condition seem a bit defensive it's because for many years we were told it was "all in our heads" or psychosomatic. Thank goodness the medical community now recognizes it, though there's no known cure.

     However I have almost no symptoms now. Here's some information I recently shared on a support group for PWCs (People With CFS.)

     The things that helped me are strange, but maybe reading about them will help somebody else, or at least help us understand the disease.

     Even while I was sick my energy level improved from about 30% of normal to around 70% when I stopped eating foods high in sulphur, but that's a sensitivity, not an allergy. One of my symptoms was that I kept developing more and more allergies, especially to foods. But avoiding them isn't what made the big difference. 

     When I reached menopause my doctor said I was at high risk for osteoporosis, partly because of all the cortisone that had been given me.  But all the HRT pills contained cornstarch and one of my worst food allergies is to corn, so the doctor gave me an estrogen injection instead. When I went to fill the Rx for the only progesterone I could have the company had just stopped manufacturing it, so I couldn't take any progesterone with the estrogen. 

     I had horrendous side effects from that injection for eight months, but at the end of that time my CFS symptoms were mostly gone and the asthma I hadn't had since reaching puberty had returned. I'm not sure which happened first, so it could be that the asthma meds, which are cortisone-related, helped with the CFS symptoms, or maybe the changes in my other hormone levels caused the asthma to return. But my CFS couldn't have been caused by an endocrine imbalance in the first place because all my hormone levels had tested as normal. And some PWCs have asthma and use those meds without their CFS being helped by them.

I have read that sulphur is part of the chemical makeup of many hormones, so there may be some sort of connection there. 

No doctor is likely to give anyone else an estrogen injection without also giving them prednisone because it's dangerous. Since men also get CFS, an estrogen imbalance obviously can't be the cause, but some sort of hormonal confusion that doesn't show on the usual tests might be. 

I tried the sulphur-free diet because a friend of mine with lupus had been put on one by her doctor because it was known to improve lupus symptoms. When my friend noticed that some of my true allergies (oranges and tomatoes) were on that list she gave me a copy and I tried following the diet. As I told you, it helped a lot within a few weeks. Lupus is an auto-immune disease so there could be some sort of correlation with CFS. 

A survey of an internet support group for PWCs showed nearly all of them had a virus known to cross the blood-brain barrier and another major illness or injury within a few years. Apparently having both the virus and something else attack so close together set off something in people's bodies or brains (somebody suggested it might be the hypothalamus) that has never been able to shut down again.

But, in my case, the estrogen injection overcame it.

Although I feel fine now except for the multiple allergies, if I eat anything high in sulfur my CFS symptoms return mildly. I won't eat those foods long enough to find out if continuing to eat them would make me worse, for obvious reasons.

I wish some scientist would use my experiences to help figure out a cure that would work for everyone, or at least be able to explain what causes the disease.