Thanks to all who replied. I will do as JohnCharlieNoak
suggested and study your replies before I respond further. I hesitated to even post here, but as the saying goes: "hope springs eternal. Thanks, Brady

JohnCharlie, that is certainly an interesting post! I have copied and saved it for future reference!

Sir,

As Frank so astutely pointed out, your history is entirely consistent with CFIDS/ME.

The European name for the condition is Myalgic Encephalomyelitis. That mouthful translates as muscle pain + mental "fog" + nerve pain + nerve dysfunction.

It affects 500,000 to 800,00 in the USA, and a similar number in western Europe, and again a similar number in Japan.

The CDC in the last two years added it to their short list of high priority emerging viral infections.

It is often triggered by a viral infection in the setting of high physical and/or emotional and/or psychological stress. Many people test positive for the Epstein Barr virus, at least initially. Many of the people affected are athletic, very active "over-acheivers". Doctors used attribute the disorder to depression, but that theory has been debunked for over 15 years. If your doctor says it is due to depression, he/she is either lazy about keeping up with recent medical developments, or is an idiot, or is mean spirited.

Treatment until recently has been aimed at relief of symptoms. There are several medicines that are very helpful in dealing with some of the many symptoms of this condition.

Because modern medicine has been so slow to study this condition (to be fair it is a very complex problem), many unscrupulous people have stepped into the treatment void to offer ineffective snake oil type cures. Making a profit off other peoples misery makes them no different than a democrat politician (ie lower than a whale's scrotum).

Right now researchers from Japan and Belgium are in a foot race to bring some truly effective treatments to market. There is a drug called Ampligen that recently completed phase III trials in the US. It may hit the market in the next six months. It is believed to work as an antiviral, and to also modulate the immune system. Many of the symptoms of CFIDS/ME are caused by an inappropriately "turned on" immune system releasing a class of chemicals called cytokines. These chemicals are used by the body to attack viruses, and are what makes the flu feel so bad. Most people with CFIDS/ME feel like they have a bad case of the flu constantly because of the cytokines flooding their body.

I treat a fair number of people with this, mainly because it is so common. Two very talented doctors in this field are Dan Peterson, MD, in Incline Village, Nevada (near lake Tahoe), and Lucinda "Cindy" Bateman, MD, in Salt Lake City, Utah.

Your nerves feel like they are being fried because they are. In a few years when effective treatments and more precise diagnostic tests are widely available the same doctors who are now saying "I don't know" (an honest answer), or "Its all in your head" (a dishonest answer) will be stroking their beards and saying "well of course you have CFIDS/ME", "I knew it all along."

Doctors, insurance companies, and the lay public often substitute diagnostic tests for medical reasoning. So, if there isn't a test, it doesn't exist. If it doesn't exist, why try to develop a test. Pretty Kafka-esque, eh?

Actually there now are two tests available that are positive in a significant portion of the poeple with CFIDS/ME. The first is a blood test that looks at an entity called RNA-L-ase. This normally exists in a form that has a mass of 80 kiloDaltons (the size of a kiloDalton is not important to this discussion). People whose immune systems are over activated by CFIDS/ME have most of their RNA-L-ase split to form the active version. The active version has a mass of 37 kiloDaltons. The test looks at the ratio of 37 kD RNA-L-ase to 80 kD RNA-L-ase. An elevated ratio supports the diagnosis of CFIDS/ME.

The second test looks for a virus called HHV-6A. Many people have HHV-6B in their bodies, but the A form is the one associated with CFIDS/ME. The kicker is that the HHV-6A resides primarily in the central nervous system (brain and spinal cord), and also inside of peripheral nerves themselves (like the nerves going to your leg). So, to do the test requires a spinal tap (not a big deal if done correctly).

Some times multiple sclerosis (MS) can present similarly to CFIDS/ME because they affect the nervous system in much the same way, though by different mechanisms. A careful history helps to differentiate the two because their behaviors over time follow different patterns.

To diagnose MS a physician will often get two tests: an MRI scan to look for changes in the white matter in the central nervous system that is characteristic of MS, and a (drum roll please) spinal tap to look for something called oligoclonal bodies that are also characteristic of MS (and other similar diseases).

Shit, this ran long.

Print this out, read it a few times, send me a PM.

Your story is very consistent with CFIDS/ME. The best way to nail down the diagnosis is a detailed history and physical exam by someone who is up to date on knowledge of the condition. There are treatments for the symptoms. I believe we will see treatments that address the root causes in the next 2-5 years.

JCN

Doc: Thanks for your response. In response to your questions:

Please explain what you mean by 'the standard battery of tests.' I do not know exactly what tests were done; the results went to my previous doctors. I assume they were any tests that could be obtained from a blood test that would correspond to the symptoms, such as MS and rheumatoid arthritis. I had tests run by my original family doctor, WVU hospital, and the Cleveland Clinic.

Did you have an MRI or CT scan of you lumbar spine? No. I had X-rays, which at the time showed only a very small amount of arthritis, appropriate for my age. None of my doctors suggested this, perhaps because the pains are not limited to one part of my body.
Is there any history of autoimmune disease in the immediate/or extended family? No. The only type of a neurological disorder that I am aware of is familial tremons which my Dad and his brother and sister had. My brother (age 68) and my sister (age 61) both have this, but it is not severe. My brother controls his with medication. I have not shown any signs this. I do have some shakiness in my muscles when I am fatigued, but it does not seem the same; mine is more like I lose fine motor control rather than a rhythmic shaking.

What lab work has been done? CBC? Sed rate? Biochem profile? Urine? In addition to the previous tests mentioned above, I had a mult-phasic test done by the local hospital. The only things that showed out of the ordinary were slightly elevated fasting blood sugar (120) and high triglycerides (500), which my doctor characterized as borderline type II diabetes (which my father had, but controlled with diet). This did prod me into going back to the gym more often and I was able to lose 25 pounds in the last 6 months. I have read that high triglycerides are associated with difficulty in keeping one's weight down because the body is storing fat rather than providing energy.

If you had sudden back spasm and pain shooting to your big toe, it is likely that you ruptured a lumbar disc at L5 level, but this would show up on MRI/CT imaging but not x-ray. I had previously slightly injured my back/hip skiing when I slid on ice and then hit loose, heavy snow which caused me to come to an abrupt halt; I didn't even fall. I quit for the day. The next morning my hip was sore in what I think is the sacroiliac region. I iced it, took aspirin and it seemed to heal over the next few days. Sometime later I had a back spasm while dragging a heavy mower(cutter bar type) up a steep bank. I just quit for the day and had no soreness the next day. Two or three years later I reinjured the same area, dragging some heavy cross-ties. This time my back was sore the next morning and bothered me for some time afterwards, but never to the point where it kept me from skiing or other activities; it was more of just a small annoyance. It wasn't until some years later (5-6, hard to remember) that I started to have problems that were worrysome. I had started playing tennis after not having played for about 10 years and started experiencing a slight pain running down my serving (right) arm. I dropped out the tennis league so that would not feel obligated to play, but continued to play occasionally. I also continued running three miles three times a week, and began to experience pains in the arch of my feet. It was worst in the morning when I first woke up. Strangely enough, at first it did not bother me while walking or running, but by the end of the summer I had to give up running. I eventually went to a sports medicine doctor. He took X-rays and
when they came back he walked into the room and said "it's your back, do these stretches" and started to leave. When I said "what about my arm", he paused and said "that's your neck" and left. I had been doing stretches since I started a running program twenty years before, so I was not impressed. I did do the stretches for two hours per day, one hour in the morning and another in the evening for a couple of months and saw no improvement.
Have you seen a neurologist?
Yes, after seeing the sports medicine doctor, I went to a neurologist. Because my first symptoms were with my right arm, he did the test where they put needles the length of your arm and run an electric current through it. He said the traces showed that I had experienced some damage in the past, but it had healed.

Numbness in each lower extremity could also be attributed to a disc lesion, spinal cord or nerve root stenosis (narrowing), a cyst, or other space occupying lesions.
I had thought that because the pains were all over my body that the problem was not related to one particular area of the spine. Your mention of the spinal cord did remind me that once when I was running up a steep hill, I stopped to tie my shoelaces and experienced a severe pounding in the back of my neck while I was bending over; it felt like someone was giving me a karate chop in the back of the neck. One doctor at the sports medecine clinic did mention that bending over like this was one test that they did to check for an inflamed spinal cord, but that was all he said.
The numbness is on the surface of the skin on my right shin(actually, the tibias anterior muscle, not the bone. It may be gradually coming back over several years), my left kneecap, and the balls of both feet. Strangely enough, the arch of my foot is rather sensitive.
Hurt all over? I have a continuous ache in my upper and lower parts of my legs, feet, lower arms, upper back, neck. I also have occasional sharp, shooting pains that might occur anywhere in my body: fingers, feet, even my earlobes. They feel just like someone was jabbing me with a needle multiple times (maybe ten) with a frequency of about once per second; I don't know if this corresponds to my heartbeat, but that is about the rate.

Easily injured? Can you qualify this and be more specific?
In addition to the skiing injury mentioned above, I injured my shoulders about 25 years ago while doing bench presses. I had switched from using a machine to free weights and thought I was being conservative, but that evening I had trouble taking off my undershirt. It healed enough that I could maintain my activities, but remained tender right on the bone where the collarbone attaches to the shoulder bone. After about ten years, I found out about the sports medecine clinic that I mentioned above and they gave me series of exercises to do with a length of surgical tubing. They helped, but anytime I do anything like using a heavy hammer,sawing, carrying lumber that attachment point of the collarbone gets sore. It is always a little bit tender.
Has a doctor mentioned that you have a connective tissue disorder? No, my present doctor just said that my symptoms fit both fibrositis and cronic fatigue syndrome ( I also am tired all of the time). I am basing this just on a knowledge of my own body. I had been running since in my early twenties and working out in the gym for the last thirty years. I was never a competitive lifter; I just did it to keep in shape for my other activities. I never played football and was never in a car accident. A couple of examples: my elbows hurt at the attachment point of the triceps, even with light weights. Also, my ankles many times hurt on the inside and outside of the ankle bone for no apparent reason. A couple of years ago, my brother wanted to go on a day hike. I told him that my ankles were bothering me and I didn't know how far I could go. The trail turned out to be very steep and rough and almost nonexistant. At the top of the first hill, I suddenly realized that my ankles no longer hurt; they were not sore later on, either.

Have you had any muscular atrophy? No, actually I am fairly strong in any motion that does not hurt too badly. I work out on Nautilus equipment mostly, because there is less chance of injuring myself on them. I can do more weight on them than most people who are not serious body builders or competitive lifters. Since I started having health problems and had to curtail my activities, my weight gradually crept up from 195 to 245 pounds ( I am 6'1"), but since Feb of this year I have lost 25 pounds. It didn't help that I got laid off from my job at the age of 56 and had to work out of town and eat in restaurants for the next three years. Even when I weighed 240 last year, a "pinch test" showed my body fat to be 23%, so I should be less than that by now. I am hoping to be able to get down to 195 again by the end of the year. I was working on a degree in computer science, but decided that was not doing my health any good either, so now I am just awaiting retirement next year and working on my health. Of course, getting laid off at age 56 greatly reduced my retirement benefits (don't let anyone tell you that age discrimination is illegal; if they don't enforce the laws, it's not illegal).

Do you have any history of trauma? Other than the above rather minor incidents and one I just thought of. Once I fell while skiing and cut my left knee slightly. It wasn't even enough see a doctor about and I skiied the next day; it just aggravated me that it cut a hole in my ski pants. That knee did get sore a couple of times in the last 4-5 years; the kneecap got so sore on the surface that I could only get out of bed by lifting that leg by hooking my other leg under it. The first time it eventually swelled up but the doctor was not able to remove any fluid from it. The only thing that showed up on the X-ray was a small calcium deposit evidently where I had hit it on the rock while skiing. The swelling subsided and the pain went away over the next couple of weeks. A year or two later the same thing happened except that this time I applied ice, which kept the knee from swelling, but did not shorten the recovery period. I still occasionally get the shooting pains in the kneecap as described previously, but I get them in the other kneecap also.

Frank: Thanks for your response and best wishes for your wife. It sounds as if she is having a worse time of it than I am.

I have done some searching on the internet and also attended some local meetings of group for CFS. The problem is that almost everyone is wanting to sell you something. It is very difficult to find out what information is true and what is just a sales pitch. Best wishes, Brady

JCN: Thanks for your reply. I'm getting chased out the school library (still on summer schedule); I will reply more tomorrow. Your description: muscle pain + mental "fog" + nerve pain + nerve dysfunction. pretty well describes it. I hadn't mentioned the "mental fog", but I have that too. It seems like sometimes I'm just too tired to think. Later, Brady

dwhunter: Thanks for your comments. I'm glad that you found it worthwhile. As I said, I hesitated to even mention it here, but anytime I meet smart people, I pump them for all the information I can. Thanks, to all, Brady

Brady,
Blow off any site that is trying to sell you anything. A principle that I am very hard nosed about in my practice is that I don't sell anything but my time, my knowledge/experience, and my skill with a scalpel, needle, or sutures.

There will be a biennial international meeting about CFIDS in Madison, WI, in October. There should be some good information coming out from that.

Utah (Salt Lake City) and Wisconsin both have good state CFIDS organizations.

There is an organization called Immune Support that is OK. Some of their posts can get a bit out there.

There is a National CFIDS organization that Dr's Bateman and Peterson are board members of. That organization is pretty solid.

Hemispherix BioPharma out of Philadelphia, PA holds the patent for Ampligen and other related products. They are a publicly held company, so their informational pages are careful and conservative with the verbage.

You will do much better overall on your home computer than at the medical library.

Don't read anything in Lancet, Nature , or any other British medical journals. They won't acknowledge the biochemical and infectious basis of this condition because the cost implications for their medical and social systems would be enormous.

Here is the citation for the landmark/watershed article about CFIDS/ME:
Am J Med 2000 Feb; 108: 99-105
A 37 kDa 2-5A Binding Protein as a Potential Biochemical Marker for Chronic Fatigue Syndrome
Kenny De Meirleir, MD., PhD, Catherine Bisbal, PhD, etc.
The medical library can get a copy for you for about $5.00.

Don't knock yourself out trying to learn everything about this condition in one afternoon. Let the information seep into you over a month or two. It will stick better that way.

Discount articles where someone claims to have "the" answer.

I purposely have not provided links because I'm a no good, lazy, computer illiterate, SOB. Well that's accurate, but I want you to do some of the searching yourself. You will stumble on stuff that helps you better than just the stuff that I look at.

This disease is nasty. It can take away most everything you hold dear. At the same time you look "normal" to the outside world, so they don't understand at best, and call you lazy at worst. The first thing I do with my patients is acknowledge what is really going on.

Catch you a little later,
JCN