Abnormal hair fibers - Exploring possible link to tick borne illness

[Garz]

I have been meaning to share this for a while – as a feel it could be of interest and perhaps helpful to a number of people here.

First some background.

My fiancé and I both became ill around 5 years ago with some mystery illness. Starting with fever, severe fatigue, headaches, swollen joints, neurological disturbances, gut issues and a host of odd and seemingly unconnected issues. We have been up and down the UK seeing both NHS and private doctors and specialists but not received any satisfactory diagnosis that could explain how two previously fit and healthy high functioning persons could get ill at the same time with the same symptoms described. However, all were strangely adamant that we couldn’t have an active infection. The NHS did eventually (years later) test for several infectious diseases like rickettsia, q-fever, Lyme etc - but all tests were unlikely to detect chronic infections and carried the rider that symptoms present for over 6months were unlikely to produce positive serology – unsurprisingly all tests were negative and I was therefore diagnosed with the fallback diagnosis of CFS or Fibromyalgia - depending on who I saw on the day.

5 years on and the best Rheumatologist and gut experts I could find admitted they had no one on their books who fitted our symptom picture and both independently suggested private test for Lyme disease despite the previous negative NHS results. So, I did a full panel of approx. 11 tests with Armin labs in Germany a few months ago and received a positive result for both IgM and IgG antibodies for Borrelia, several other organisms and also a super low CDE57+ count indicating low immune function often present in chronic Lyme disease.

More details are in my posts here - but in essence it looks very much like we have both been suffering with Lyme disease all along. I have interrogated the test results, published papers, Armin labs and the manufacturers of the test kits used - especially with regard the risk of false positive Lyme result and as far as I have been able to ascertain the chances of this are v small – less than 10% - combined with the low CD57+ count and the symptom patterns – our outdoor lifestyle and a history including tick bites - including in the USA - I therefore believe this is the best interpretation possible.

Now, bear with me, I know this is taking little while to explain. Over the years of looking for a diagnosis, a chance event occurred that I wanted to share.

Gut issues and sensitivity to various foods ( esp carbs ) were a constant feature of our illness and this is a common feature with various gut infections, particularly parasites. So, having lost faith in some of the commercial tests available due to conflicting results, I decided to take matters into my own hands and bought a old biological microscope from a guy I found locally, who had in turn acquired it from one of the UK universities some years before. It looked a bit beat up - but functional. To test it I plucked a few hairs out of my head and put them on a slide under the scope to confirm I could see them clearly. The scope needed a good clean but I could see the hairs and remember noting at the time they had some odd appearance - but since the job in hand was just a quick test to see the scope worked ok I didn’t think much more of it. Later after completing the stool slides, I had bought it for, and after finding nothing of great concern, my mind returned to this point of odd appearance of the hairs as a bit of a puzzle.

So, I took some more hairs from my head and looked at them again. Sure, enough there were anomalies again. I took hairs from my arms, legs etc and looked at those too. Again, there were the same sort of anomalies. This was interesting. So, to check if I was just some kind of freak or whether this could be a shared effect, I looked at some of my fiancé’s head hair (remember she suffers from the same symptoms as me) - and again found similar but less pronounced anomalies.

What could be causing it. I thought back through my reading and remember:

• several references that borrelial organisms infect and multiply in the keratinocytes of the skin
• many references to their inflammatory actions inside cells, consumption of collagen and other materials needed for healthy tissue.
• the link now quite well documented between borrelia infection and Morgellons disease - a condition in which abnormal coloured and deformed keratin fibres and other keratin artefacts are exuded from the skin of infected persons (typically from a damaged hair follicle inside skin lesions I believe.
• There is also a borrelial infection in cattle that causes abnormal copious fine keratin fibre / abnormal hair eruption from the skin around the hoofs of infected animals

These last two references demonstrating that borrelia can cause abnormal hair formation.

So I thought this would be a good place to share what I have found, for others with suspected tick borne illnesses ( especially Lyme disease - and also Bartonella as it is also known to reside in the skin) to see if their hair is similarly effected and if so its possible that this sign/symptom could be a useful indicator that people could do at home, whilst diagnostic tests are of such limited effectiveness.

First here are some typical healthy hair photos from google - note the smooth surface and consistent diameter

This pattern of flattened regular scales called Imbricate scales is typical of human hair - as per the diagram below and very clear in the scanning electron microscope image below that.

Photos below are from my beat-up old Watson biological microscope with an iphone strapped to the top – so please forgive the image quality.

Note also; depth of focus is very narrow with the current setup so any non-flat object is difficult to capture over its entire length but hopefully you can see the abnormalities I am referring to.

Spiral ridges

Irregular surface features

Ribbon like

Horn like structures

Abnormal features noted

• Ridges and helix like spirals on the surface of the hair that appear to have formed when the hair was grown (smooth rather than abraded or frayed edges as expected with healthy but later damaged hair )
• Irregular surface texture - random lumpy texture – rather than smooth fine scales
• Irregular thickness of the hair – varying along its length
• Ribbon like hairs – not round in section
• Horn like structures in the hair - this is the most extreme anomaly I saw – protruding up to 1x the hair thickness.

Not all hairs were affected. Perhaps 70% of the hairs on my head had notable changes.

Hairs on my head had the most noticeable changes - arms, legs and others areas less so – hairs on my chest were non-round in section - more ribbonlike – but this could be entirely normal.

My partners hair had surface imperfections but generally to a much lesser extent than my own ( less hairs effected and each to a lesser extent ) so if this is related to borrelia infection it could be that the anomalies vary in proportion to the severity of illness - as my partner is less ill than myself having made part recovery since our sickest point approx. 3 years ago ( entirely supposition at this point).

For reference – here is an Example of study linking Morgellon’s disease to borrelial infection and abnormal hairs in cattle

https://www.researchgate.net/public..._A_comparative_approach_to_Morgellons_disease



Could be nothing – or could be something

I would be interested in others views and particularly if there is anyone else here with a microscope and a suspected borrelial infection who would like to add their findings for comparison.

 

[Rufous McKinney]

I would be interested in others views and particularly if there is anyone else here with a microscope and a suspected borrelial infection who would like to add their findings for comparison.

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

 

[Hip]

The hair findings are interesting, though I don't really know what to make of it. I have a microscope, and looking at my own head hair just now, it looked like normal hair.

Regarding your positive Lyme tests: ArminLabs appear to have a high false positive rate. Several completely heathy journalists all sent blood samples to be tested at ArminLabs, and all came back positive; see here.

Also, Lyme is spread by ticks, not by respiratory secretions (saliva), so the chances of you and your partner both getting Lyme at the same time by each being bitten by a tick seem very low. Whereas a respiratory infection would spread easily between partners just via kissing.

My fiancé and I both became ill around 5 years ago with some mystery illness. Starting with fever, severe fatigue, headaches, swollen joints, neurological disturbances, gut issues and a host of odd and seemingly unconnected issues. We have been up and down the UK seeing both NHS and private doctors and specialists but not received any satisfactory diagnosis that could explain how two previously fit and healthy high functioning persons could get ill at the same time with the same symptoms described.

Are you aware that no lab in the UK is able to test for the chronic enterovirus infections which are found in around 50% of ME/CFS patients. This requires sensitive antibody testing using the neutralization method (not ELISA, IFA or CFT), but to my knowledge there are no UK labs which offer antibody neutralization testing for the enteroviruses linked to ME/CFS, namely coxsackievirus B and echovirus.

It's sad that so many ME/CFS patients come to these forums, and are unaware that enterovirus is a major infection linked to ME/CFS, and do not know the correct way to test for enterovirus. There are labs in Germany, Greece and the US which offer neutralization method testing for coxsackievirus B and echovirus — see the CVB and echovirus section of this document. The German IMD lab offers CVB3, 4 and 5 tests for €34 each, which quite good value.

Not saying you do not have Lyme, but the most common pathogens linked to ME/CFS are coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19 and Chlamydia pneumoniae, so those would normally be the first port of call in terms of pathogen testing.

 

[wigglethemouse]

Tagging @duncan - might be of interest

 

[duncan]

Thank you for tagging me, @wigglethemouse . It is interesting. I have stopped being surprised at anomalies caused by different borrelia species and strains. I cannot say whether that is what is at play here. Most things Borrelial are to some extent controversial; Morgellan's is certainly no exception.

Also, Lyme is spread by ticks, not by respiratory secretions (saliva), so the chances of you and your partner both getting Lyme at the same time by each being bitten by a tick seem very low.

Not really. If you are in an area that is endemic for Lyme, it likely happens more than you'd imagine. Check out Pam Weingtraub's "Cure Unknown" - it highlights entire families infected. Not by a single tick, of course, but by ticks sharing the same strain.

Not saying you do not have Lyme, but the most common pathogens linked to ME/CFS are coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19 and Chlamydia pneumoniae, so those would normally be the first port of call in terms of pathogen testing.

Not true in the US, where the default diagnosis to Lyme patients who just miss the CDC's 2T criteria is ME/CFS. I suspect the same holds true for countries like the UK who embrace other metrics like the C6.

@Garz, you clearly have done some homework. So you probably know that microscopy is encouraged by some Lyme advocates, but mainstream Lyme, eg the IDSA and countries like the UK which pretty much adhere to IDSA doctrine, dismisses it as too unreliable to be used diagnostically. Doesn't mean you're not onto something here, though. I shudder to think what my hair looks like under a microscope.

More details are in my posts here - but in essence it looks very much like we have both been suffering with Lyme disease all along. I have interrogated the test results, published papers, Armin labs and the manufacturers of the test kits used - especially with regard the risk of false positive Lyme result and as far as I have been able to ascertain the chances of this are v small – less than 10% - combined with the low CD57+ count and the symptom patterns – our outdoor lifestyle and a history including tick bites - including in the USA - I therefore believe this is the best interpretation possible.

US ticks? Oh, that opens up so many possibilities, including babesia and bartonella and B miyamotoi. Not just different species in the US, but many more strains. So, who knows?

 

[junkcrap50]

k. So you probably know that microscopy is encouraged by some Lyme advocates, but mainstream Lyme, eg the IDSA and countries like the UK which pretty much adhere to IDSA doctrine, dismisses it as too unreliable to be used diagnostically.

What things do lyme advocates use microscopy for, besides OP's hair analysis? What else do they look at?

 

[Hip]

Not true in the US

If you go to a decent ME/CFS doctor in the US, those are the 7 main pathogens they will test you for. They may test for a few others like mycoplasma or HHV-7, but the leading ME/CFS doctors don't usually test for Borrelia (at least not in the list of tests I have seen these doctors order).


Do you know any ME/CFS patient with Borrelia who has actually been fully and properly tested for all the 7 main ME/CFS pathogens and found completely negative for those 7? Because I suspect many people who attribute their ME/CFS to Borrelia may actually be positive for chronic infection with one of the 7 main pathogens, which may better explain their ME/CFS symptoms.

 

[pattismith]

@Garz

thank you for sharing!

How do look like your hairs and nails ?

What things do lyme advocates use microscopy for, besides OP's hair analysis? What else do they look at?

"Biology of Spirochetes

Borrelia burgdorferi, like the human pathogen Treponema pallidum, is a spirochete. Spirochetes are a group of phylogenetically-distinct bacteria that have a unique mode of motility by means of axial filaments (endoflagella). Spirochetes are widespread in viscous environments and they are found in the intestinal tracts of animals and the oral cavity of humans. The spirochetes have a unique cell surface which accompanies their unique type of motility. The endoflagella are contained within the periplasmic space between a semi rigid peptidoglycan helix and a multi-layer, flexible outer membrane sheath. When the filaments rotate within this space, the spirochetes move in cork-screw fashion. This type of movement is thought to be an adaptation to viscous environments, such as aquatic sediments, biofilms, mucosal tissues and the intestinal tracts of animals. For pathogens, this allows the spirochetes to hide their flagella, which are normally antigenic, from the host immune defenses.

Spirochetes are usually much longer than they are wide, and often their width is below the resolving power of the light microscope. For example, Borrelia may have a length of 20-30um but a width of only 0.2-0.3um. Hence, most spirochetes cannot be viewed using conventional light microscopy. Dark-field microscopy must be used to view spirochetes. Dark field microscopy utilizes a special condenser which directs light toward an object at a angle, rather than from the bottom. As a result, particles or cells are seen as light objects against a dark background."

http://textbookofbacteriology.net/Lyme.html

 

[duncan]

What things do lyme advocates use microscopy for, besides OP's hair analysis? What else do they look at?

Spirochetes and portions or remnants of spirochetes, in blood.

 

[duncan]

If you go to a decent ME/CFS doctor in the US, those are the 7 main pathogens they will test you for. They may test for a few others like mycoplasma or HHV-7, but the leading ME/CFS doctors don't usually test for Borrelia (at least not in the list of tests I have seen these doctors order).

That is incorrect.

Do you know any ME/CFS patient with Borrelia who has actually been fully and properly tested for all the 7 main ME/CFS pathogens and found completely negative for those 7?

If you frequent the Lyme forums you will likely find them. The reason for this, in part, is Lyme and Company frequently disrupt patients' immune systems, and normal viral titres are known to rise. Of course, I've seen reports of activated viruses in confirmed Lyme patients, including myself. Moreover, I can guarantee you that many Lyme patients who test for positive for ELISA but only, say, 4 bands IgG positive for WB will be referred to a ME/CFS expert, and told they don't have Lyme, and at least some of these will show elevated viral titres - and be treated for those viruses, even though it's Lyme behind it all. I know this because I was one.

This is not to say that one or more viruses are not behind many if not most ME/CFS cases worldwide.

Because I suspect many people who attribute their ME/CFS to Borrelia may actually be positive for chronic infection with one of the 7 main pathogens, which may better explain their ME/CFS symptoms.

Then perhaps the better diagnosis in those ME/CFS patients is whatever that pathogen is.

 

[duncan]

@pattismith - perfect. There was a guy somewhere in Europe that championed microscopy, but I cannot recall his name at the moment. I may be misremembering this - it was some years ago - but I think he was asked to prove he could discriminate Lyme schetes in real time, but he or his team may have came up short.

That has not stopped the proliferation of microscopy in Lyme communities. Perhaps the most famous was/is Doctor Alan MacDonald who used dark field microscopy to help demonstrate Borrelia in five Alzheimer brains.

I always thought it was pretty cool myself. Spirochetes have a distinct shape. Most difficulties came in when Lyme advocates identified blebs as such, and those who disparaged microscopy disagreed.

 

[pattismith]

@pattismith - perfect. There was a guy somewhere in Europe that championed microscopy, but I cannot recall his name at the moment. I may be misremembering this - it was some years ago - but I think he was asked to prove he could discriminate Lyme schetes in real time, but he or his team may have came up short.

That has not stopped the proliferation of microscopy in Lyme communities. Perhaps the most famous was/is Doctor Alan MacDonald who used dark field microscopy to help demonstrate Borrelia in five Alzheimer brains.

I always thought it was pretty cool myself. Spirochetes have a distinct shape. Most difficulties came in when Lyme advocates identified blebs as such, and those who disparaged microscopy disagreed.

Not sure if you can discriminate different spirochetes species with dark field microscopy though. (Leptospira is another pathogenic one). No body ever tried to identify the spirochetes seen under the microscope? If it was Borrelia, then PCR would be positive.

 

[duncan]

Not sure if you can discriminate different spirochetes species with dark field microscopy though. (Leptospira is another pathogenic one). No body ever tried to identify the spirochetes seen under the microscope?

I suspect spirochete experts like Professor Judith Miklossey have, but not sure,

If it was Borrelia, then PCR would be positive.

Yes, PCR typically is how they verify, but PCR doesn't have a great track record with Borrelia in general. They have to know where the Borrelia is at that moment, or else it's a crap shoot.

 

[Spiderbaby]

Are you aware that no lab in the UK is able to test for the chronic enterovirus infections which are found in around 50% of ME/CFS patients. This requires sensitive antibody testing using the neutralization method (not ELISA, IFA or CFT), but to my knowledge there are no UK labs which offer antibody neutralization testing for the enteroviruses linked to ME/CFS, namely coxsackievirus B and echovirus.

@Hip Following on from this, would PCR of a feacal sample be a worthwhile test for Enterovirus infections? Seems to be the only EV test available in my country. Thanks for all your information on this topic in the roadmap!

 

[Hip]

That is incorrect.

Can you show me a post listing the tests given by the leading US ME/CFS doctors to an ME/CFS patient which included Borrelia? When ME/CFS patients have posted their test list on this form, it has not included Borrelia.

Obviously if you go to a Lyme specialist, they will test for Lyme. But the leading ME/CFS doctors in the US, from the batch of tests I have seen, do not appear to order Borrelia tests.

Here are some examples: Montoya's tests, Gordon Medical set of test, and Dr Chia set of tests.

One exception is KDM, whose set of tests includes Borrelia.

If you frequent the Lyme forums you will likely find them.

But you don't personally know any Lyme patient with ME/CFS symptoms who has been properly tested for all 7 of the main ME/CFS pathogens?

The reason I ask is because if we had a number of patients with ME/CFS symptoms, with Lyme confirmed on a reliable test, and with all the main 7 ME/CFS pathogens tested negative, that would indicate Borrelia can cause ME/CFS symptoms. But without having examples of such patients, it is always possible that the ME/CFS symptoms of a Lyme patient could be caused by a co-infection with one of the 7 main ME/CFS pathogens, and not directly due to Borrelia.

In other words, I was just trying to find solid evidence that Borrelia can cause ME/CFS symptoms.

@Hip Following on from this, would PCR of a feacal sample be a worthwhile test for Enterovirus infections? Seems to be the only EV test available in my country. Thanks for all your information on this topic in the roadmap!

I don't think that is a reliable method for chronic infections. Most enterovirus tests are geared up for acute infections (first 10 days or so of infection), when the blood and feces are full of viral particles.

After the acute infection is over, enterovirus may then enter the chronic phase, where it lives inside your tissues, and in this case there are very few enteroviral particles in the blood or feces. So PCR on the blood and feces will often come back negative, even though you have a chronic ongoing infection in the tissues.

Enterovirus ME/CFS expert Dr John Chia says for CVB and echovirus, only antibody tests using the neutralization method are sensitive enough to detect chronic infections.

As mentioned above, there are labs in Germany, Greece and the US which offer neutralization method testing for coxsackievirus B and echovirus — see the CVB and echovirus section of this document. The German IMD lab offers CVB3, 4 and 5 tests for €34 each, which quite good value. The staff at IMD speak English.

You can usually send a sample of your blood serum by mail or courier to these labs, so you do not have to be in the same country.

 

[duncan]

Can you show me a post listing the tests given by the leading US ME/CFS doctors to an ME/CFS patient which included Borrelia?

I don't need to. I've personally been examined by three of the most famous ME/CFS doctors in the US. Arguably a fourth. And I am fairly confident if Bell were still practicing he'd be ordering TBD tests since, if memory serves me correctly, I'm pretty sure he is has opined Lyme is behind many of his patients problems..

Obviously if you go to a Lyme specialist, they will test for Lyme. But the leading ME/CFS doctors in the US, from the batch of tests I have seen, do not appear to order Borrelia tests.

I cannot speak for all, but I can speak for some. And what you say may have been true several years back, but you give me a ME/CFS expert in a Lyme endemic state or area in the US and if you have not been tested for Lyme, I'd be shocked if they don't test. Do you realize that key advocates of the IDSA Lyme Guidelines have specifically advised doctors that if a suspected Lyme patient tests only partially positive, and exhibits subjective Lyme symptoms, one of the differential diagnoses is ME/CFS? And if a seropositive Lyme patient is treated with standard IDSA treatment protocol for Lyme, and still has symptoms, to diagnosis as ME/CFS?

But you don't personally know any Lyme patient with ME/CFS symptoms who has been properly tested for all 7 of the main ME/CFS pathogens?

I have. I do not remember all the conversations I've had over the years with Lyme patients, but I guarantee you many have been referred to ME/CFS specialists and have had all the tests. Some accepted those tests results. I accept them for myself. But I also accept my TBD results.

The reason I ask is because if we had a number of patients with ME/CFS symptoms, with Lyme confirmed on a reliable test, and with all the main 7 ME/CFS pathogens tested negative, that would indicate Borrelia can cause ME/CFS symptoms. But without having examples of such patients, it is always possible that the ME/CFS symptoms of a Lyme patient could be caused by a co-infection with one of the 7 main ME/CFS pathogens, and not directly due to Borrelia.

Well, sure. Those symptoms could also be caused by something other than Borrelia or those 7 main ME/CFS pathogens. Bartonella comes to mind, as does Babesiosis (not the classical variety) You live in the US, you better be checking.

In other words, I was just trying to find solid evidence that Borrelia can cause ME/CFS symptoms.

Take away swollen knees and add PEM, and what do you get? How many strictly Lyme patients know what PEM is? It's not in their dialect. That doesn't mean many don't suffer from it. Why do you imagine that IDSA disciples push ME/CFS in the differential diagnosis?

 

[Hip]

but I guarantee you many have been referred to ME/CFS specialists and have had all the tests.

The trouble is, some of the top ME/CFS specialists in the US do not know how to test for enterovirus properly, so while they might provide the correct herpesvirus tests, they screw up on the enterovirus testing.

Prof Montoya at Stanford for example used the wrong, insensitive test for coxsackievirus B, so his CVB testing cannot be relied on (I wrote to Stanford to tell them this, but they did not reply). Now that Montoya is no longer at Stanford, I don't know if Stanford have changed their battery of tests.

That's why I would like to see some examples of Lyme positive patients who have been reliably proven negative for all the 7 main ME/CFS pathogens, using the right tests.

I not arguing that Borrelia does not cause ME/CFS symptoms; my guess is that it can. However, without seeing some examples of Lyme patients who were conclusively proven negative for the 7 main ME/CFS pathogens, there will always be the lingering doubt that their ME/CFS symptoms might be due to one of these 7 pathogens, and not to Borrelia.

And even if Borrelia is able to cause ME/CFS symptoms, then it's still important to test for all the other 7 main ME/CFS pathogens, because if patients have any of these 7, there are some treatments which are useful (Valcyte for herpesviruses, oxymatrine for enterovirus).

It's always tragic when patients do not get the diagnoses they need, because this results in them missing useful treatments which could ameliorate their condition.

If you frequent the Lyme forums you will likely find them.

Which are the principle Lyme forums, by the way? When I have searched for Lyme forums, I did not find much. I could not find anything like the Phoenix Rising forum equivalent for Lyme. Which is surprising, considering that chronic Lyme is a major world issue.

 

[duncan]

The trouble is, some of the top ME/CFS specialists in the US do not know how to test for enterovirus properly, so while they might provide the correct herpesvirus tests, they screw up on the enterovirus testing.

Prof Montoya at Stanford for example used the wrong, insensitive test for coxsackievirus B, so his CVB testing cannot be relied on (I wrote to Stanford to tell them this, but they did not reply). Now that Montoya is no longer at Stanford, I don't know if Stanford have changed their battery of tests.

That's why I would like to see some examples of Lyme positive patients who have been reliably proven negative for all the 7 main ME/CFS pathogens, using the right tests.

Ok. You may be right. You may be wrong. The reason I think you are wrong in at least some cases is the extraordinary steps some leading early Lyme researchers have taken to mischaracterize not only the Lyme patient community, but the history of Lyme.

I not arguing that Borrelia does not cause ME/CFS symptoms; my guess is that it can. However, without seeing some examples of Lyme patients who were conclusively proven negative for the 7 main ME/CFS pathogens, there will always be the lingering doubt that their ME/CFS symptoms might be due to one of these 7 pathogens, and not to Borrelia.

Fair enough. But keep in mind what I just wrote.

And even if Borrelia is able to cause ME/CFS symptoms, then it's still important to test for all the other 7 main ME/CFS pathogens, because if they have any of these 7, there are some treatments which are useful (Valcyte for herpesviruses, oxymatrine for enterovirus).

Agreed.

It's always tragic when patients do not get the diagnoses they need, because this results in them missing useful treatments which could ameliorate their condition.

Yes.

Which are the principle Lyme forums, by the way? When I have searched for Lyme forums, I did not find much. I could not find anything like the Phoenix Rising forum equivalent for Lyme. Which is surprising, considering that chronic Lyme is considered to be a major world issue.

Ironically, the one I liked the most was, in some parts of Lyme world, rumored to favor the IDSA, but I disagree with that rumor. It is not really used much anymore, so I won't bore you with its name. Lymenet is arguably the most famous as it is dedicated to Lyme, but, eh. There are many that are broad medical forums with sophisticated Lyme subforums like MDJunction. I am not recommending either. There is, of course, Lymedisease.org, which is excellent, but it's not really a forum. I prefer a Lyme forum that is dedicated to debating studies and protocols, and off the top of my head, I cannot think of any except the one no one really posts on very often anymore. Likely, I am simply ignorant of an excellent one. These days I am on Lyme email lists that I hope ensure I get pretty much all TBD study results, or at least their abstracts, directly.

 

[Spiderbaby]

Many thanks @Hip for your response. Trying to find somebody to separate the serum for these blood tests could be the biggest stumbling block!
I find the divergence in testing from the various doctors you referenced earlier quite interesting. Seems that each doctor has their own areas of interest in terms of testing, and more importantly treating these various pathogens.
For instance REDlabs that KdM uses does offer a PCR test for Enterovirus, but I have yet to hear of anybody being treated by him on the back of that test.
Like you have mentioned elsewhere, I wonder how many of us have stumbled down the rabbit hole focusing on a single pathogen (Lyme) whilst being neglected in terms of other just as relevant pathogens as a causal factor in CFS.

 

[Hip]

the extraordinary steps some leading early Lyme researchers have taken to mischaracterize not only the Lyme patient community, but the history of Lyme.

But only in recent years has it become apparent which blood tests are required to test for chronic enterovirus, thanks to the work of Dr John Chia. As I mentioned, even other top ME/CFS doctors are not aware of the work of Chia (unbelievable as this may sound), so I very much doubt that these early Lyme researchers knew about the right enterovirus tests.

I prefer a Lyme forum that is dedicated to debating studies and protocols, and off the top of my head, I cannot think of any except the one no one really posts on very often anymore.

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.