Saturday, 11 August 2007

Now comes the big news...

...even though it is almost twenty years old!

In the late 1980-ies and early 1990, my cardiologist together with a biochemist at the hospital designed and performed a series of experimental investigations that really turned out to give some new results on what is wrong when you have CFS.

In short, something is wrong with the energy consumption, or as we cell biologists say the ATP metabolism. ATP is the prime energy molecule in cells, and most of it is produced in the mitochondria of cells. It was not that there is too little ATP, on the contrary the synthesis in my heart or skeletal muscle cells were 3-5 times the normal when tested on biopsies. Still, after only a few minutes work, the ATP levels could drop to only 10 or 20 percent of the normal values, while in normal people it only decrease 10 or 15 percent in total, during the same conditions. Furthermore, it took more than an hour of rest to regain the ATP levels I should have, while the control persons got their ATP back within a few minutes.

Another observation from these experiments was that the acidity, or pH value, inside the muscle cells dropped dramatically, from the normal 7.2 down to 6.0. This was so extreme that no one had seen before, and was believed the cells shouldn’t survive, but obviously I did – well my muscle cells was live and had no ultrastructural damages seen in many other conditions. When this result was repeated at several occasions, and with different techniques, we had to believe they were correct. The low pH was also related to production and release of large amount of lactic acid in the blood.

All these experimental data fits so well with the clinical picture! I can move around, but slowly in order to not ware out totally. However, when exercised in some way – like walking for a while slowly – it can take more than a day, even two days before I am back to my “normal” level of strength. And I still feel – always – as I have been running a marathon in my legs. That is a lot of lactate all the time, giving me muscle ache.

Later, I will try to tell more about the specific tests that were done – give more technical details – because I think this is a very important finding they did, not only on me but on a small group of people with CFS here where I live. However, it was never noticed at other research places, even though most of these results were published in scientific journals. One explanation could have been it was rather difficult and complex experiments to perform, but I really don’t know why.

Well, so much for my story today. No treatment came out of this, and I still suffering the same way, untreated. And the reason for this metabolic disturbance, the original cause, is still of course obscured.

But if you want, go ask your doctor about these things! Maybe there are someone that will be able to take up this again, and come a little further!

ZenMaster

Friday, 10 August 2007

Sometimes, everything slows down...

Sometimes, everything slows down...

... like the last week. And this...

ZenMaster

Tuesday, 31 July 2007

What an excellent machine...

What an excellent machine a computer is, particularly when you have CFS. I can write a sentence, or sometimes only a half, save it to some later time when I feel a little better, go back, write more, rewrite, find words or information in small bits and pieces to add, and then, after a while this kind of coherent text appear! I don’t know how coherent I am in my thoughts, but at least it looks quite impressive to me when I see this growing after a while! Hehe...

To continue my story: I guess I had my moments with my doctors, since I am a cell biologist by training and fascination. I’m not a medical doctor, just a Ph.D. who have worked with cells, how they are built, look like, grow and function, so I know some details about life in general that doctors don’t know! (Hehe...there I got it!). Of course, this was a problem as much as a strength. I probably got in conflict with half of the doctors I met, because they couldn’t take a patient knowing more about some details that they didn’t understood. The rest half could grudgingly accept my questions – and order some more tests – and then there were one or two that really could talk and discuss with me what was going on, what they knew or not, and even come up with new ideas to test together! I guess I was lucky after all! But the first such doctor came to the cardiology department I spent a lot of time at, only 2 or 3 years after I became ill the first time.

During these first years, I had numerous ultrasound tests of the heart, gamma-camera tests, and coronary angiograms, not to mention all kinds of regular blood tests. None of these showed there was really anything wrong with me.

I had my mitral valve prolapse, but that I knew of before, and probably have had all my life, and it was perfectly constant, so it hadn’t change and wasn’t an explanation to my sufferings.

OK, they could see some smaller areas in the heart muscle that had ‘some’ sort of disturbed micro-circulation from the gamma cam pictures; the capillary vessels didn’t allow the blood to flow properly at times. But this finding was varying from time to time, different areas and different extent, so they really didn’t know what to do about it. Anyway, at this point, I got a diagnosis: negative angina or spasm in the capillary blood vessels in the heart!!! The older female cardiologist explained it as ‘sometimes we see patients with the same symptoms as with angina pectoris, but they don’t have any blockages in their big coronary arteries’. Later I learned that up to 10-30 percent of angina patients are in this group!

Well, this prompted the doctors to put me on beta-blockers, calcium-blockers, digitalis and a few other conventional heart medications. Of course I didn’t get better, but I took them for years anyway, silly as I was. Sometimes I had as many as 12 to 15 different pills to take every day! And, ohh yes, nitro-glycerine in various preparations: fast working pills under the tongue, slow releasing to swallow, drip when I was at the hospital, even a paste to put on the chest twice daily!

Well, at least they tried to find something that would help! What a guinea pig I was, but THAT I didn’t mind! Better try something than being ignored!