Hi all,

It's quite awhile since I posted and when I did last post I think I was pursuing the CFS/ME/Fibromyalgia issues.

After having been tested for many/all the neurological conditions I came upon a chance remark where someone said that you can have Peripheral Neuropathy with CFS/ME/FMS......and that set the brain ticking.

About 13 weeks ago a cough I had had off and on for a couple of years, escalated in frequency & intensity and became very distressing. A couple of years ago I had a Mycoplasma Pneumoniae infection in my bloodstream and lungs and the cough I developed this year reminded me of that same cough. I mentioned this to my doc a couple of times but he didn't repeat the serum test for the Myco P. So I went to another doc who specialises in CFS/ME/FMS and he tested me for lots of the viruses like Q Fever, Ross River Fever (Australia), Murray Valley Fever, Pitticosis, CMV, Legionella and Mycoplasma.

Well the upshot was, the Mycoplasma P. titre was elevated and a second titre done again last week was also elevated meaning I have a chronic persistent Myco P. infection. CMV was present and active and Legionella was a little out of range on the high side.

Meanwhile I have found quite a bit of medical research which shows that a disproportionate number of people with CFS/ME/FMS have Myco P infections. Cause or effect one might ask? Furthermore I have found references to the fact that for a very tiny number of people a chronic Myco P. infection may cause PN!

So at the moment I'm treating the Myco. P with something called MMS Chlorine Dioxide (a non-pharmaceutical pathogen killer). Last Saturday I reached the maximum dose of MMS and by Monday this week the cough had greatly diminished. It is Friday now and I can say the cough has gone from a 100 to about a 15 in severity and intensity in six days after months of coughing. I am pretty rapt about it really and hope that once the chronic infection subsides I may see some improvement in my many other symptoms.

Increasingly infectious agents are being found to be culprits in many obscure disease processes and it is a great reminder to me to look first at simple causation before necessarily looking at more obscure causative factors.

I am so glad to hear you are gaining ground on a diagnosis. That's wonderful.

I hope it leads to good places for you!

Glad as well your getting hopefully to something that will help,and good for
you for finding the new Dr.. Sue ps good to hear from you again.

Hi all,

It's a few weeks since I've dropped in but wanted to share the latest. I think last time I mentioned that a chance comment or something I read somewhere alluded to the fact that Peripheral Neuropathy can be a symptom of CFS/ME/FMS. Seeing that I had a whole constellation of new symptoms since August last year including PN I thought I'd pursue this angle. So like many of us driving our own diagnosis I went to an, 'ME/CFS/FMS believing GP' elsewhere, and he ordered a series of viral/bacterial type blood tests. Most significantly my Mycoplasma Pneumoniae titre came back quite elevated which in itself can, in a very small proportion of people, cause PN.

When I subsequently talked to my asthma nurse at my regular clinic visit and told her the unfolding of what I had found out and showed her the test results she said: "I feel quite sick, in fact I feel totally ill about what you have just told me." She also said that the medical team including herself, the GP and the respiratory physician had failed me completely, by being too blinkered in the way they had been looking at my symptoms for over one year and she apologised profusely and got up and gave me a hug!

And listen to this!! She also said that it was not my job to have to find out what was causing my health issues but their job... and they had failed!!!! That sure was validating!

She then called my regular GP into the appointment and told him that they had all "missed the boat" and gave him a copy of the two Mycoplasma tests I had done six weeks apart from independent doctors. He was clearly taken aback.

An hour or so later he called me on my mobile phone and said he was "most disturbed" by the conversation we had had that morning. He said he had got out all my notes after I left and made a timeline to see when this could have started.

I will be seeing him again tomorrow so will continue the conversation more deeply. I have had some treatment already but will be insisting on regular Mycoplasma Pneumoniae titres now to make sure this bug which has obviously become chronic in my system and has affected lots of organs IS KILLED - once and for all!

Hopefully after long term antibiotics or antimicrobials I may start to resume my former health.

So pleeease everyone look at obscure infectious agents being a possible cause of PN, especially if you have many symptoms or if you have a bad persistent cough.

Megan - you mentioned infections...this may be a stretch but what about a yeast infection (sorry gentlemen!)? I have had a yeast infection for about 10 years. It generally is not much of a nuisance, just enough of a bother for me to know it's there. It flares up about twice a year, then I take an antibiotic which cures it for a week or so, but always come back in a minor way.

Wonder if I should pursue this with my neuro?

Hi Megan - this is totally fascinating to me... because I have been suspecting a link with the Mycoplasma Pneumoniae infection or Chlamydia Pneumoniae (Cpn) Infection.

My - so far unexplained - neuropathy (MS suspected, lots of tests done but nothing showing up) began in my early teens... but I had pneumonia at age 9 and from that point onwards asthma and recurrent chest and throat infections (and a hideous number of short courses of antibiotics)... up until the current day (I am 37 now) alongside my slow progression of nerve damage (mainly legs and feet, but more recently in onr hand and arm although thankfully that has retreated at present).

I am in the UK and will find out how to get tested for this...
Best wishes and thanks for sharing this

Leslie - While I have been researching the connections between infectious agents, CFS/FMS and Peripheral Neuropathy I have not majored on yeasts, as that has not been my problem. However it's not unreasonable to assume that when anything of a 'toxic' nature remains in our body for a protracted period of time, there will be consequences.

Often the question to ask is, is it the causative agent of our health problem/s or is it an opportunistic agent which has arisen as a result of our vulnerable state....and this we don't always know but we have to start somewhere.

I did a very quick search for you (it's late here and I should be in bed) and found off the top these two links - you may have already seen them....and I am sure there are more and possibly better articles related to this topic also but this is a start for you.

http://www.candidafree.net/

http://findarticles.com/p/articles/m...56/ai_n6272303


Lucy - I can't believe that despite being so simple to test for these infectious agents, it just doesn't seem to occur to most doctors to do so. Chlamydia Pn. is another one I had tested for also, along with the others I mentioned in my first post of this thread.

While I can't give you a link off the top of my head, I have noticed plenty of references to possible chronic (sometimes occult ie. hidden) infectious agents being the cause of MS.

The internet does give us a wonderful chance, especially if we are so inclined to look for quality sites to do a lot of research in trying to piece together our puzzle. We have a vested interest in solving our health mystery whereas doctors just do not either have the time or the inclination to invest research time for difficult cases.

All the best getting your doctor to look into this for you. I think what I have learned from this is: do your research; know what you want tested; and present to your doctor concisely what you want done - don't beat about the bush. It is your life that gets mucked up when these things are overlooked.

If you are able to get and understand pertinent articles from medical journals, they are the ones that carry the most weight with doctors. Newspaper reports and anecdotal stories do not impress them at all. So if you want info to back up your argument as to why you want something tested, then show 'em due cause from their own professional literature!