OK - thank you all for your contributions and thoughts
However, we seem to have traveled some distance off-topic here - although I do understand the reasons
I will try to go back to those that have added to the original discussion
thank you for sharing!
How do look like your hairs and nails ?
my hair is short and so not easy to judge if it looks any different to normal atnormal magnification/distance.
my partner's hair is long and fine - it used to be long and glossy and well behaved - now it is damaged and split and difficult to manage - lots of broken strands and a lot falls out on the brush and in the shower etc
both of our nails seem to grow faster than we ever remember before - but are thin and weak - with slight ridges but to be honest we are not 100% sure if they were like this before or not. so many things were not under scrutiny until we became ill. since then everything is under hyper scrutiny as we search for clues to what is wrong with us and this inevitably has a perception distorting affect.
@Hip
thanks for the link to the Journo article on Armin - will certainly read that with interest.
ref the discussion on various enteroviruses as a cause of CFS/ME vs chromic Lyme or lyme group infections.
I will try to keep it brief as it's not the core of this discussion - but I do feel it's worth addressing in terms of why this path and not another in my particular case.
From everything I have read and my own experiences, I am pretty confident that either can give you symptoms most GPs would categorize as CFS/ME or Fibromyalgia after routine blood count, liver function, and a few other routine tests like C reactive protein etc come back "within normal range" - and the same could likely go for a host of other underlying causes. none of the GP's or others we saw would have even tested for Lyme or any of the other potential infectious diseases that could be underlying our illness until we suggested it So its highly likely that there are people out there with a CFS/ME diagnosis that in fact have a chronic infection ( bacterial, viral, parasitic or other).
To my own mind - its a bit of a moot point because I do not feel CFS/ME or fibromyalgia represent a diagnosis in the normal sense. It's just a name they give to a cluster of symptoms that often happen together when they have failed to understand what is really going on (but don't want to say so) and to which there are no mainstream treatments for the root cause - since they don't know what it is) and are instead limited to treating symptoms which is typically less than effective, and may in fact have multiple side effects.
So CFS is simply a name for a group of symptoms to me - created largely for politico-economic reasons - its exact manifestation will vary from person to person - and the population of persons with CFS/ME pattern symptoms is likely a diverse mix of various root causes rather than a single one.
For those with diagnosed active chronic or re-activated viruses - the question becomes why is this person's immune system not getting on top of the virus as it is designed to, in their case - but in others, their system copes just fine?
For instance - in my own case - no-one we know has become ill with any sort of similar condition since we became ill - despite close contact and me preparing food for them etc ( a classic method of passing on enteroviruses).
So it seems to me that while I would not be entirely surprised if I have an active entero-virus as part of the condition I am suffering (gut symptoms, food intolerances etc) - if this is true it doesn't necessarily follow that it is the underlying true root cause.
Some further underlying cause or immune system dysfunction may have predated it, to allow it to become chronic.
There are now several studies - 3 recent ones I think - demonstrating that the majority of typical chronic Lyme patients are co-infected with multiple organisms - including the well-documented co-infections like Bartonella, Babesia etc that presumably came from ticks - but also likely community-acquired infections like Chlamydia spp.
Lyme experts such as Horowitz and others also note reactivated viruses in many of their Lyme patients - especially those in the hard to treat category where traditional treatments have not worked have re-activated viruses like EBV, CMV and enteroviruses too I think.
So this paints a picture of Borrelia organisms damaging the normal functioning of the immune system in such a way as the host then goes on to kind of hoover up other infections - from those present in the tick - to those already present in the host (but suppressed by the till then normal functioning immune system)- and/or later from the community.
indeed there is good evidence for this in teh existing scientific literature -
-a long documented association of low CD57+ cell counts in Lyme disease patients ( not always - but notable). These cells are the particular variant best suited to targeting Borrelia and other bacterial infections ( viruses too perhaps - have not checked )
- a recent study in primates( I think) that found borrelia travel to and damage the germ centers in the lymph nodes that would normally make the required specialized anti-infective white blood cells. This would very likely leave the host more susceptible to many different sorts of infections.
- many many studies cataloging the disturbed cytokine and chemokine levels in chronic Lyme disease. These are the chemical messengers and regulators of the immune system. again - when dysregulated the host's ability to fight infection is hampered.
so, my overall perspective on this is that for a person to have a chronic viral infection that most others can fight off, something significant has happened to the immune system to weaken it in particular ways.
in my case - my partner is effected in the same way at the same time - so an infectious cause is most likely for this immune dysfunction.
Lyme disease fits this profile very well - and with our symptom picture - and case history - and along with the positive test results - viable explanation for the negative test results etc - this seems like the path most likely to lead to improvement at this point in time.
its also appear more actionable at this time in terms of treatment - which is another factor in the decision.
I do take your point of it being surprising, at least from a conventional view of how Lyme disease develops, that we both developed symptoms at the same time - which is true in basic terms - in that one day we both got a fever and felt ill and never recovered our previous health from that day to this.
However, when my partner and I discuss it she points out that 6 months prior to that day - something was wrong with her - she had intense pain in first her right and then her left shoulder ( radiculitis ) lasted for around 4 weeks each and resulted in such pain she could not use her arm. CAT scan normal both. she also had a number of infections over thsi time - having prevuiously been v healthy indeed. I felt increasingly run down over teh same period and also had odd health issues that seemed random at the time.
Using the above model this can also be explained - ie something knocked out our immune system - leaving us susceptible to further infections - each adding to the symptom picture.
In fact, people like Horowitz -describe around 50% or more of their Lyme patients have this type gradual onset of symptoms following a kind of characteristic pattern of declining health, with first lots of odd out of the blue ailments or afflictions that were at that point unconnected, and then fiinally descending into severe chronic disease. the other half or less seem to have an acute illness - often after a known tick bite with the characteristic rash and early diagnosis of Lyme - insufficient treatment - and then chronic illness.
Apologies for the long explanation - but nothing in this area is very nice and clear cut, especially when we are dealing with the underlying paradigms.
do appreciate everyone will interpret their situation differently and should absolutely be allowed to do so.
In my case, I would in fact consider progressing down the enterovirus investigation route if I find no help from teh current one.
but back to the original purpose of the thread - if anyone (with lyme or any other chronic illness )has any photos of their hair fibers they can share - or thoughts on that - I would be very interested.
