Cpnhelp.org

Could you please explain what you're looking for, and maybe why you're looking for it?

Hi MacKintoshThanks for replying. I have chronic fatigue - very chronic. I have looked into quite a few areas of research. It has been so long and i have been tied up in another area. Now coming back into the area of ME/CFS (if thats what it is) i find that things have moved on.This whole nightmare of very low energy carries on for me and basically i am now after all these years starting again. Sigh.I am about to undergo testing in january at a hospital here in the UK called the B..... (We have to be careful here) I feel i have been phaffing about for so long, i just want to cover all bases. So i will have all the blood tests i can organise, but i do want to do the dark field also because i had it before and it came up with paracites. It may show up some EB's, maybe the blood tests will come up with Cpn, I dont know. Everything takes so long. Another sigh. I think i have read here that EB's are unlikely to show up with microscopy, but its worth a shot for anything else that may appear. Do people not try this method then?I have found some places which are within reach, but not necessarilly suitable. Is the skill of the operator important to the interpretation of the pictures? I have found somewhere which magnifies 10,ooo times, is this enough?Thanks Po - x

Welcome PoTesting is notoriously unreliable, not for parasites, but for this bug.  The very simplest thing you can do is begin the supplements, especially Vit D3 and NAC.  Read the Getting Started (at the top), get some NAC and start taking it.  It may give you an answer.  If you get a "cold", achey joints, or other symptoms, you definitely have this bug.  I was never tested for this at all.   The supplements are good for you, and your Vit D level, like most of us, is probably dangerously low.Rica

I had the blood microscopy test done years ago when I had a diagnosis of Chronic fatigue Syndrome. It was pretty much a useless test in terms of providing anything to work with.... though there were lots of things that were a bit 'off' in it. The doctor who actually ordered the test didn't seem to take much note of it either !Since then I have found out that my ACTUAL problems are Hemochromatosis ( have you had a full Iron panel done? ) High Lead levels, Lyme Disease and Cpn.So much for CFS...... which actually stands for Can't Find Solution  !!!

I am British, and was living in England when I got sick in 1994. SEVERE  fatigue, and felt like I had some kind of infection that just never went away. I went through all the usual work-up within the NHS and all the tests that were run came back as 'normal'..... so I ended up with a dignisis of M.E./CFSWhen a doctor says M.E./ CFS, it means Mystified Entirely / Can't Find Solution........ though in practice they usually haven't looked that far. Fatigue is a symptom.... not an illness.I thought it was all nonsense, and 'knew' that I had somekind of infection that for some reason was firmly entrenched. We moved to Canada in 1997 and eventually I was diagnosed with Lyme, which dated back to 1994. I now am getting treatment from a LLMD in the States.Hemochromatosis is a genetic Disease. It is one of the commonest genetic diseases, but is not often dignosed because doctors do not think to look for it, or they use the wrong test. It is particularly common in people of celtic origin. It causes excess amounts of Iron to be absorbed, and early symptoms include fatigue and joint pains. If they Iron levels get too high it can lead to Cirrhosis of the liver and other serious complications.To check for Hemochromatosis you need a FULL Iron panel..... not just  Serum Ferritin. It is good if you can get copies of all your lab tests so that you actually check what has been done. Don't assume that the right test have been  done.It is not the same thing as Hepatitis B and C. These are both infections.Good luck with your quest for an answer...... don't give up ! Anne

 Hi Anne Sorry for the delay in relpying. Thank you - yes i think i have had a full iron panel done because i have been seeing a hepatologist. And yes, i do keep a hard copy of my blood test results. I've learnt that and it is such valuable advice. So most people would NOT have a full iron panel done and your point is very valuable. Hemachromatosis could well be a differential dx to CFS and not diagnosed. Dx overlooked!! I think my iron is ok . My results are FE iron 14.0 (r 6.6-26). Total iron binding capacity 62 (Range 41-77). Iron binding satauration 23 (r 15-50). When i actually thought about it i did not know very much at all about Hemo so i googled it and wiki cam up with the following. I appreciate your hemo is genetic and you probably know that now (although you could not have known before or someone in the family would have forearmed you). It can be non hereditary also. I thought so but was not sure. Because i have been readng about people with Hepatitis and it is a bit more common with them. Because of course Hepatitis is definately a condition to be excluded in a dx of CFS. Secondary Hemochromatosis and Non-Hereditary Hemochromatosis Other causes of iron buildup include what is termedsecondary hemochromatosis related to certain anemias such as thalassemias and sideroplastic anemia and some specific rare inherited diseases such as atransferrinemia – no transferrin is produced, and aceruloplasminemia – no ceruloplasmin is produced.Non-hereditary hemochromatosissituations often involve one or more of these underlying conditions: chronic liver disease (such as chronic hepatitis C, alcoholic liver disease, nonalcoholic steatohepatitis), infectious hepatitis, alcoholism, blood transfusions, iron pills or injections and long-term kidney dialysis.