Abnormal hair fibers - Exploring possible link to tick borne illness

Hip

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Many thanks @Hip for your response. Trying to find somebody to separate the serum for these blood tests could be the biggest stumbling block!
If you find a local phlebotomy service to take a blood sample, they should be able to centrifuge your blood for you, to provide a serum sample. Serum is the pale yellow liquid that results when you centrifuge blood. It takes about 30 minutes to centrifuge, so you would have to wait for that to be done.

In London, I think I paid £30 to a phlebotomy service to get a blood sample taken and centrifuged into serum. As soon as they gave me the serum, I placed it in an envelope and mailed it to the lab.
 

duncan

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Odd that there are no good Lyme forums. If chronic Lyme can manifest as ME/CFS, you'd think there would be lots of Lyme patients discussing their condition just as ME/CFS patients do.
It depends on how you qualify "good". I think you and I would agree on the study thing as being important. In Lyme world, it's frequently more about treatments, which are hotly discussed, from standard protocols to the seemingly very unusual. As much as I howl against the IDSA, I am in the end an abx fool which is the IDSA's weapon of choice, just in silly amounts that have already, many times over, been demonstrated to not always eradicate Lyme. I want to debate not just study results and argue protocol merits, but the pedigree of the authors and their politics. I see this in ME/CFS circles - not so much in Lymeworld. But as I said, I may just be missing something. I really don't look that much anymore since I get the studies myself.
 
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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.
 

Wishful

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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.
It is really hard to remember things accurately, especially things that we didn't pay particular attention to. You might try digging through your stuff to find some of your pre-illness hair, and stick that under your microscope. Maybe the abnormalities are congenital. If they really are from the recent illness, that's something that might impress your doctors, or some researchers.
 

Hip

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could you link me to the imd lab in germany? there are several it seems?
Sure, here are the links to IMD's various enterovirus tests:

CVB3, CVB4, CVB5 and EV6, EV30.

These test costs €34 each. The staff at IMD lab speak English. @JohnnyMinnesota99 just got tested at IMD, so he may be able to help. He had high antibody titers (1:320) for CVB5.

IMD unfortunately do not offer the full range of coxsackie B viruses (B1 to B6), but the ones they do offer are some of the most common enterovirus infection in ME/CFS. Dr Chia John Chia observes that the CVB and echovirus serotypes most often found in ME/CFS are:1

• CVB3 and CVB4 first and foremost
• Then CVB2, EV6, EV7 and EV9
• And then much less EV11

The Hellenic Pasteur Institute in Greece provide a coxsackievirus B antibody neutralization test for 68 euros. This covers the full range, B1 to B6.

The lab Dr Chia uses is ARUP Lab in the USA, but they are expensive, around $440 for their coxsackievirus B test.


These are the only labs I know which offer the sensitive neutralization method of antibody detection, which Dr Chia found is the only one capable of reliably detecting the chronic enterovirus infection found in ME/CFS.
 

bread.

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Sure, here are the links to IMD's various enterovirus tests:

CVB3, CVB4, CVB5 and EV6, EV30.

These test costs €34 each. The staff at IMD lab speak English. @JohnnyMinnesota99 just got tested at IMD, so he may be able to help. He had high antibody titers (1:320) for CVB5.

IMD unfortunately do not offer the full range of coxsackie B viruses (B1 to B6), but the ones they do offer are some of the most common enterovirus infection in ME/CFS. Dr Chia John Chia observes that the CVB and echovirus serotypes most often found in ME/CFS are:1

• CVB3 and CVB4 first and foremost
• Then CVB2, EV6, EV7 and EV9
• And then much less EV11

The Hellenic Pasteur Institute in Greece provide a coxsackievirus B antibody neutralization test for 68 euros. This covers the full range, B1 to B6.

The lab Dr Chia uses is ARUP Lab in the USA, but they are expensive, around $440 for their coxsackievirus B test.


These are the only labs I know which offer the sensitive neutralization method of antibody detection, which Dr Chia found is the only one capable of reliably detecting the chronic enterovirus infection found in ME/CFS.


ty!

But they would also be positive in healthy people that had any of these infections, correct?
 

Hip

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But they would also be positive in healthy people that had any of these infections, correct?
Depends what you mean by "positive". In ME/CFS, there are two interpretations for "positive".

When you look at your viral antibody lab report, if antibodies to a virus are detected in your blood, even if quite a low level, that is classed as a positive result on the lab report.

Usually low levels of IgG antibodies indicate an infection that you caught in the past, but one which is now either completely eliminated from the body, or for infections which cannot be eliminated from the body, is fully under control by the immune system.

These low levels of antibody are still classed as positive on the lab report, even though there is no current infection. Lots of healthy people in the general population will be positive for enterovirus antibodies (meaning a they had a past infection with that virus at some point in their life).



However, ME/CFS specialist doctors look for high levels of antibodies, which to them indicate active ongoing chronic infection. So to be positive for a chronic active infection, you need to have these high levels of IgM or IgG antibodies. Generally speaking, you do not often find these high levels of antibodies in healthy people.

So to answer your question: No, being positive for chronic active infection is rarely found in the general population, but is very often found in ME/CFS.

But this interpretation of high antibody levels = chronic active infection is controversial, because some people believe there is no active infection, it is just a dysfunctional immune system pumping out too many antibodies. But ME/CFS doctors see high antibodies as evidence of active infection.

I wrote an article about the intricacies of viral testing in ME/CFS here.
 
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Oh, DARN. Now I want my microscopes back even worse (three, burnt up in wildfire). So I don't have more than 14 power at the moment/ not adequate.

It would be so completely not surprising to find mutant hair...especially now knowing about our fingernails and fingerprints.

Here from an interesting web site, they describe some of the chemicals of hair: UhOH. Our body's hunt for amino acids- why not hair?

"In addition to water, the elements that compose the chemical composition of hair are: keratin, lipids, minerals and pigments.
Keratin is a protein found in the cortex. Keratin is composed of 18 amino acids. The most abundant amino acids are: Cysteine, cystine, serine, glutamic acid, glycine, threonine, arginine, valine, leucine and isoleucine."


https://www.cesareragazzi.com/en/structure-and-chemical-composition-of-hair
Thanks for that.
shame no microscopes as am still interested to see others hair photo's.
Regarding fingerprints - I vaguely remember reading some accounts of people with Lyme losing their fingerprints - or something like that. is that what you were referring to?
if so I would be interested to learn more ....
 
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Thinking about the original intent of this thread.

I should perhaps post the original message in a Lyme dedicated forum to get more exposure and hopefully some more people who are able to do a bit of home microscopy so we can see if I am just a one-off or if its a common symptom of Borrelia infections.

I tried here first as I have found the discussions to be educating, helpful and reasonably balanced. Something that's not commonplace in all web forums.

perhaps those that Duncan mentions
unless anyone has any other suggestions -(I guess I need large membership and scientific leanings)