The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Questions for confirmed viral sufferers.

Discussion in 'General Symptoms' started by Chriswolf, Jul 14, 2015.

  1. Chriswolf

    Chriswolf Senior Member

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    I would like to know from any of those with confirmed lab values indicating viral infection whether they had prominent bouts of specific symptoms prior to or even possibly after antiviral treatment.

    - Dizziness
    - Feeling out of breath, chest tightness
    - Sudden and profuse sweating (often with accompanying dizziness), even without a high body temperature
    - Feeling as if one has a severe fever, even in the absence of a high body temp
    - Eye/vision problems, difficulty with bright lights, easily irritated eyes
    - Swollen lymph nodes

    Do any of these symptoms seem familiar, especially if all or a few of the symptoms come on very strongly and then leave after a few days/weeks?

    I was confirmed with mono back in 2011, and the day I went to the doctor and was tested, I felt very much as I have for the last four days after having a brief reduction in symptoms for about a week and a half.
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I have confirmed virus and am currently on Famvir and Valcyte.

    I do have the breath and chest tightness. I bought a pulse ox because I thought I wasn't getting enough O2 but I am so it's not compromising my breathing. I feel it worse when I'm tired. today I discovered that potassium seems to help it.

    The bright lights stuff is most likely adrenal. I just found this out too. Actually my HPA axis is a mess. I can't quite remember but it has to do with cortisol controlling pupillary response. It is sluggish so when light hits our eyes it's bad. I live in a cave. I did recently start on DHEA and the first day I could actually keep my blinds open for awhile so I know I'm on the right track with that.

    HPA axis controls body temp all that stuff. I'm just learning that now because I can't tolerate heat, light, I don't sweat. Hypothalamus, Pituitary and adrenals.

    I know when I have a viral reactivation I can control it with Famvir, that mono feeling. Most of the time I keep them under control with AV's. Stress can reactivate them for me.

    If you test positive for virus why don't you get some AV's? They can make a difference.
     
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  3. Hip

    Hip Senior Member

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    @Chriswolf

    How are you defining "confirmed viral sufferers"?
     
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  4. halcyon

    halcyon Senior Member

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    I have a confirmed echovirus 30 infection.

    Yes, the initial infection caused vestibular neuritis and vertigo. I've had intermittent dizziness and disequilibrium since.
    Yes, I had very prominent chest tightness in the beginning which gave way to constant shortness of breath since. Antiviral treatment (Epivir and Equilibrant) has improved this slightly, though I still get shortness of breath on exertion.
    Yes, I would often get this, both with and without actual low grade fever. Exertion would often bring it out, though it has become much better on antiviral treatment.
    Yes, but not photosensitivity or irritation. More like blurred vision, increased vitreous floaters, and suddenly decrease in quality of vision. I had to get glasses and now a year later I seem to already need a stronger prescription.
    Yes, mostly submandibular and cervical and strangely one sided. Every once in a while I will get pain in my armpit nodes but never lower.

    Yes, when I was first ill a number of these symptoms would cycle rapidly. As time goes on exacerbations are less frequent and some have just become permanent but low grade. Dr. Chia notes that this recurrence and cycling of symptoms is common with chronic enteroviral infections.
     
    Last edited: Jul 15, 2015
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  5. Chriswolf

    Chriswolf Senior Member

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    Any sort of quantification that is interpreted by a physician, in this case, to have had an influence on their diagnosis of ME/CFS.

    Alternatively, I would also like to hear from anyone who have had multiple tests indicating viral influence, such as a mono test, who also suffers from CFS.

    Basically, I'm looking for somebody who is not hypothesizing about potential viral influence and can confirm various symptoms - as I am, it makes estasblishing a metric by which to determine the value of any further investigation a bit easier.

    @halcyon @minkeygirl

    The dizzness and sweating are disconcerting, and are what I experienced the first confirmed experience with mono. I'm currently fighting that now, and I'm starting to wonder if I'm experiencing a recurrence.

    Interesting that you get increased vitreous floaters, as I started noticing those around 2007-2008 and they started worsening around that time. Then inexplicably they'd get better, then worse again. My vision also interestingly enough gets better and worse and then inexplicably better again.

    I do notice that my vision problems are at least in part attributable to blood pressure, beta blockers seemed to really help, but I can't stand to take them for very long.

    The eye problems may well not be indicative of viral influence, but it's interesting that you experienced some variations of what I've experienced nonetheless.

    My adrenals aren't working so great either, that much I do have multiple tests confirming.

    I have one more question for you and this might seem strange, but do those symptoms get worse when experiencing bouts of very warm weather for extended periods of time?

    Cold weather has challenges all it's own, but warm weather seems to exacerbate what I suspect to have some viral origin.

    To minkeygirl's question about antivirals, I would love to try them, but I've pretty much given up on doctors here in Canada, they're all members of the cult of prescribing antidepressants for every problem I have, it's absolutely ridiculous. I'm pretty sure I will have to pay to see a doctor out of country before I get that option. Here's hoping!
     
    Last edited: Jul 15, 2015
  6. lnester7

    lnester7 Seven

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    I recognize those symptoms in my case mostly as OI. As I treated the infections and they become active - inactive I know what causes what in my case: Heart burn (my coaxackie b2 is back), pain in join specially hands: Parvo virus. Head Neuro (hh6) Specific tiredness (ebv). Lymph node pain (somebody in my house has a virus, usually a cold or stomach bug.

    I put the sweating in bold: That for me is Food allergy (I can recreate at will like eating cheerios).

    The rest underlined is OI In MY case.
     
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  7. Hip

    Hip Senior Member

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    In terms of quantification, the following might be of use:

    Note though many patients have observed that their ME/CFS appeared after catching a viral infection. Sometimes the symptoms of ME/CFS can manifest within days of such infections, and in these cases, there would seem to be a clearcut viral association even in the absence of a viral blood test.



    You might be interested in this list of enterovirus (coxsackievirus B / echovirus) symptoms. Enterovirus can also cause Meniere's, which has the symptoms of dizziness and loss of balance.
     
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  8. Chriswolf

    Chriswolf Senior Member

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    Thank you for your reply.

    Hmmm, strange, preceding the resurgence of my cluster of symptoms I was experiencing a strange onset of heartburn not necessarily brought on by eating anything that would typically aggravate it.

    Is that just a personal observation? Or did you find that out from some source that it's associated?

    Ahh, I see, it lives in the digestive tract, well that explains a lot.

    That is of interest to me as apparently I was exposed to the coaxackie virus as a child. Perhaps that explains a lot of my IBS type symptoms. In addition to all my other recent symptoms, I've been experiencing some pretty incredible digestive tract problems along with it. I simply didn't want to include them in case perhaps they weren't directly relevant.

    Kind of annoying that I was not explicitly told about this and my parents didn't really seem to care much after the initial exposure. My girlfriend was the one who flipped out when she found out I had gotten very ill as a young child and investigated further, she thinks my parents were pretty lackadaisical for not letting me know or even following up on the future implications of exposure to that virus.

    And just to clarify, OI as in orthostatic intolerance?

    @Hip

    Thank you also for your reply, I'm grateful to have found a community with so many knowledgeable people who are willing to share what their experiences and what they've learned.

    It's kind of an issue of money right now, but I absolutely need to get some diagnostic work figuring out if my symptoms could have a viral influence, I can't say for sure, but I do believe also that many incidents of CFS are virally induced.

    And I don't mean to disqualify anyone who suspects themselves of being subject to it, but it's helpful to know the experiences of those who have verified lab tests, symptoms and/or diagnosis that I can measure against my own symptoms as I'm largely in the dark.
     
  9. Hip

    Hip Senior Member

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    OK, I understand the purpose of your thread now: you are thinking that virally-precipitated ME/CFS may have a characteristic set of symptoms slightly different to the symptoms of ME/CFS precipitated by other possible causal factors.

    And you are thinking that if you can tally your symptoms to those of other ME/CFS patients whose condition was virally-precipitated, then that might offer some evidence that your ME/CFS was also virally-precipitated.


    It's a good idea in principle, but in general I am not sure if there are any significant differences in the symptoms of ME/CFS associated with various precipitating factors.

    Though come to think of it, these possible differences in symptoms might make a good topic for a poll on this forum. That way we might see if there are some differences in symptoms.



    In terms of precipitating factors, viral infections appear to be by far the most common on this forum. The viruses involved are nearly always enterovirus, EBV, and HHV-6.

    Occasionally there are those whose ME/CFS appeared immediately after a vaccination (with hepatitis B being the vaccination that most frequently seems to trigger ME/CFS).

    Even more rarely, there are cases of ME/CFS that follow a parasitic Giardia lamblia infection (giardiasis) of the small intestine.

    And occasionally there are accounts of significant mold toxin exposure triggering ME/CFS.

    ME/CFS is also known to be caused by the bacteria Chlamydia pneumoniae and Coxiella burnetii, and parvovirus B19 but these forms of ME/CFS are treatable (with antibiotics, and IVIG for parvovirus).

    ME/CFS may follow a blood transfusion or major surgery, and also sometimes appears after a significant physical trauma, particularly a motor vehicle accident.

    There are a few even rarer triggers of ME/CFS, but the above list probably covers the vast majority of causes and associations for ME/CFS.

    This list comes from this page on my website.



    So if we assume your ME/CFS was precipitated by one of the above factors, and if we assume you did not have any vaccination, giardiasis, mold toxin exposure, blood transfusion, major surgery or significant physical trauma just prior to your ME/CFS onset, then this pretty much points to a likely viral trigger for your ME/CFS.



    The only thing I have left out are possible autoimmune forms of ME/CFS. @Jonathan Edwards details this possibility in the first post of this thread. In his hypothesized "ME1" form of ME/CFS, for example, the ANA test is positive and usually speckled in pattern. Prof Edwards mentions that the nature of the fatigue in this ME1 autoimmune form of ME/CFS may be a bit different from the fatigue found in other types of ME/CFS.
     
  10. duncan

    duncan Senior Member

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    Good list, but Hip may have left out a couple of tick-borne diseases, like any of the pathogenic Borrelia species.
     
  11. halcyon

    halcyon Senior Member

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    Yes, warm weather makes me feel significantly worse. I had a severe crash last summer due to overexertion combined with warm weather.
     
  12. Hip

    Hip Senior Member

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    To my knowledge, Borrelia species are the only tick-borne microbes that can cause diseases which resemble ME/CFS.


    @Chriswolf might want to look into Brucellosis though, as its symptoms, which can resemble ME/CFS a bit, include: profuse sweating, recurrent bouts of fever, fatigue, dizziness, headache, cough, chest pain, joint pain, muscle pain, abdominal pain, enlarged lymph nodes, enlarged liver and/or enlarged spleen.
     
    Last edited: Jul 16, 2015
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  13. duncan

    duncan Senior Member

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    @Hip , as you know, one of the hypotheses of ME/CFS causes is that ME/CFS is triggered by an infection of some sort. Often, this infection is flu-like in presentation.

    But that doesn't have to be the case. It doesn't have to be sudden onset, and it certainly doesn't have to share the same symptom cluster prior to "evolving" into ME/CFS. How what can be characterized as the trigger mechanism presents does not necessarily have much bearing on its ability to produce, or lead to, or trigger ME/CFS.

    So whether or not an acute illness resembles ME/CFS can be argued to be irrelevant. What matters is if the end result is ME/CFS. In fact, I would suggest that when diseases do resemble ME/CFS - such as six or so of the Borrelia species - that that resemblance only confounds research efforts. It muddies the waters.

    To that end, there are several pathogens and parasites which are vector-borne, including via ticks, that may potentially trigger ME/CFS. They range from Ehrlichia to Babesia to Bartonella to the Bourbon and Powassan viruses, to name just a handful. There are others.

    Some, btw, have many symptoms that resemble those found in ME/CFS, especially once they degenerate into tertiary or chronic stages. But that resemblance is of questionable relevance.
     
    Last edited: Jul 16, 2015
  14. Hip

    Hip Senior Member

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    When I said resemble ME/CFS, I was referring to the long term, chronic presentation of an infection or other triggering factor, not the acute phase of the infection or triggering factor.

    In the case of chronic Lyme, the resemblance to ME/CFS is so close as to make these two diseases almost indistinguishable by symptoms alone.

    A while ago I spent some time reading about Lyme and ME/CFS symptoms, to see if there might be any good differential diagnoses to help distinguish these two conditions. A differential diagnosis is one or more disease features (features such as the patient's symptoms, lab tests, patient history) that we can focus on and use to try to determine which, out of two very similar diseases, the patient may have.

    After looking at Lyme and ME/CFS closely, I concluded that the following differential diagnosis should be helpful (but not infallible) in distinguishing these two diseases:

    • Live in a Lyme area
    • Came out positive in your Lyme blood tests
    • Had an erythema migrans bullseye rash
    • Experienced Bell's palsy
    • Have arthritis of the knees or other major joints, with joint pain and swelling
    • Have a chronically stiff neck

    For each of the above features that you can answer yes to, the more likely you have Lyme rather than ME/CFS.

    The knee joint swelling is a good one, because although in ME/CFS there can be joint pain, this pain is generally without swelling (according to the CCC), whereas in Lyme, the joint pain comes with swelling. (In ME/CFS the joint pains are classed as arthralgia, whereas in Lyme they are arthritis). Of course this is not going to be 100% true in all patients, but is mostly true, so can be a helpful probabilistic guide, along with the other features listed.

    Again, with the chronically stiff neck, this may be present in ME/CFS, but is more common in Lyme, so acts as another probabilistic guide.

    If you can think of any other specific disease features that can be useful in this Lyme—ME/CFS differential diagnosis, please let me know.

    I have used this differential diagnosis in my document: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment as a guide to help patients figure out whether they might have Lyme or ME/CFS (see the "Ruling Out Other Conditions" section of that document).
     
  15. duncan

    duncan Senior Member

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    This is a very good differential diagnosis overview for Lyme and ME/CFS, @Hip .

    A couple comments:

    1) Lyme can lead to ME/CFS, or at least there is no exclusionary doctrine of which I am aware that says otherwise. I am not sure why you seem to ignore TBD's as candidates behind what many consider an immune dysfunction triggered by infections or pathogens. It's a baffling bias.

    2) If you derived your list from a regurgitated CDC/IDSA menu, you might want to be aware that your list is full of "sometimes." Sometimes Lyme patients have EM's. Sometimes - rarely - they have facial palsy. Sometimes patients test positive for Bb, again, more often not than do. Sometimes there is arthritis with swelling, although just as often as not, it is a migrating pain without swelling - as is the case for ME/CFS patients, Lyme patients suffer from arthralgias, too.

    Not sure where you got the stiff neck thing, unless it's an allusion to neuroborreliosis. And living in a Lyme endemic area may simply be irrelevant. So, by definition, your list, although helpful, is only useful sometimes - much like current Lyme diagnostics. Pretty much you can throw out all as truly meaningful except facial palsy and arthritis and an EM - and two out of three of those only apply usually to acute cases (and you seem to be saying that you are not referring to acute cases).

    3) If you drill down into your list, technically they are ALL meaningless if/once you've received treatment.

    4) Which leads to my concern on how you mean "chronic Lyme." Best you explain how you define it, if you are so inclined.

    5) There is absolutely no reason one cannot suffer with both diseases.

    6) Same as number 1: Lyme can lead to ME/CFS, as can other TBD's. Your reluctance to include Lyme as a candidate along with other pathogens is puzzling; I would very much appreciate you explaining it. I am pretty sure ME/CFS researchers and clinicians like Natelson and Enlander include TBD's as ME/CFS precipitators, as they have both diagnosed me with ME/CFS.
     
    Last edited: Jul 16, 2015
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  16. Hip

    Hip Senior Member

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    Lyme can lead to ME/CFS? Please provide a reference for this assertion.

    Some people have occasionally argued on this forum that Lyme should be considered a subtype of ME/CFS, but that is an argument, not a fact.



    What bias are you talking about? I am not aware of any "baffling bias" that I have. Please explain.

    Apart form Borrelia, I know of no tick-borne disease that strongly resembles ME/CFS. If you think there are such diseases, please provide links to articles or studies detailing their ability to resemble ME/CFS. ME/CFS is more than just fatigue; there are numerous physical and mental symptoms within ME/CFS, so to resemble ME/CFS, a tick-borne disease would have to replicate most of these numerous symptoms.



    Please provide references. I'd like to see them.



    What on Earth are you talking about?

    Why does this list become meaningless once you've received treatment for ME/CFS or Lyme? Please explain yourself.



    Yes, hence the word I used to describe it: probabilistic.



    Where do you get this idea from, that more often than not Lyme patients do not test positive for Borrelia? Please provide a reference and evidence for this.



    OK, that's interesting. Actually something useful.



    The stiff neck symptom is given in quite a few Lyme disease descriptions, for example:

    Lyme disease - NHS Choices



    If you are saying that the statistical risk of contracting Lyme is not dependent on whether you live in a Lyme endemic area, again, please provide a reference that supports your assertion.

    I very much doubt that you are correct.



    Above you seem to be saying that Lyme and ME/CFS are the same disease, and now you are contradicting yourself by saying you can have both Lyme and ME/CFS at the same time.

    In any case, I agree that there is no reason one cannot have both Lyme and ME/CFS. But so what? That is a statement of the obvious. What point are you actually making?



    By chronic Lyme, I am referring to the chronic symptoms that can remain after an acute Borrelia infection. These chronic symptoms may be due to the continued presence of Borrelia in the body, or they may be due to some immune dysfunction (such as autoimmunity) triggered by the Borrelia, or both.
     
    Last edited: Jul 16, 2015
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  17. duncan

    duncan Senior Member

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    Boy, I wish I could remember how to copy sentences like you do and comment under each. My bad.

    Ok, let's do this in order.

    1) If ME/CFS is an immune disorder, or autoimmune reaction, to a pathogen, then there is nothing saying which pathogen can or cannot lead to ME/CFS. Period. Simply because links are stronger for some - EBV, for example - does not mean even they are causal. Your exclusion is arbitrary. I don't need to prove the link on my end, but there is an entire practice in the United States of defining patients that once had Lyme, with ME/CFS - not chronic Lyme, and not post-treatment Lyme disease syndrome, as many do not believe in either.

    Moreover, you generated quite a list of diseases and disorders you claimed could lead to ME/CFS - can you provide references for each? Not that I expect you to - I'm just trying to point out inconsistencies that support my suspicion of a bias against TBDs. Besides, I just gave you two. I am sorry that you are unaware of the appreciation in the United States that Lyme is just like any other pathogen in that it can trigger ME/CFS. I can only assume this is due to the low incidence of diagnosed Lyme in the UK, and hence your unfamiliarity with it.

    2) I am quite aware of what symptoms present with ME/CFS. Lyme, too. I can never remember how to do internet links, and I lose my notes time and time again. I am sorry you are not familiar with symptoms of TBDs. Suffice it to say that these individual pathogens, either discretely or in tandem, approximate symptom clusters in both late stage Lyme and ME/CFS. There have been extensive writings to that extent, including those of Lyme experts such as Burrascano and Horowitz. All of that is immaterial, though, because ultimately my point is that some of those pathogens/parasites might lead to ME/.CFS.

    3) Once you receive recommended treatment for Lyme, you can no longer be said to have Lyme, except in very rare circumstances. Please check basic Lyme Guidelines.

    4) Yeah, probabilistic is being kind, but eh, your list can be used. It's just good to root that metric against reality. Most of your cues are relevant for acute, and you weren't aiming for acute, remember?

    5) There is a circular reasoning involved with assuming all patients with Lyme must test positive. Test positive HOW? By whose standards? That aside, many, many individuals test negative at first, only to test positive later on, even by the ridiculous standards imposed. Also, many patients positive for Lyme slip into negative territory, only to slip back into positive realm over and over and over. Others test positive by IgMs, but not by IgGs. The problems with testing positive are lengthy and inspire polemics that don't belong here.

    If you are going to debate Lyme metrics, please open a new thread and be prepare to discuss for months. You offer that you've done research on Lyme, but I fear that you've not even scratched the surface.

    6) NHS was your source for the stiff neck thing? Where do you imagine the NHS go that? Anyway, take my word for it, it's likely a reference to neuro-Lyme. It could just as easily pertain to someone who slept at a weird angle, or read for a while with a crooked neck.

    7) I am saying that the epidemiological charts for Lyme prevalence are likely inaccurate. After all, I think the current charts probably still show 30,000 cases in the US, when the real number is tens time that - or higher. I am also saying that the relevance of ME/CFS is not predicated on Lyme prevalence, if only because there are so many other pathogens that can trigger ME/CFS; therefore, it is irrelevant.

    8) By pointing out that one can have both Lyme and ME/CFS simultaneously in no way compromises the logic that Lyme can trigger ME/CFS.

    9) Your definition of chronic Lyme makes no reference to treatment. Where is the chronicity? You apparently have defined chronic Lyme as Lyme that has resolved on its own, with some minor residual symptoms, or, possibly, as late stage Lyme.

    It's better to be more specific to avoid confusion.
     
    Last edited: Jul 16, 2015
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  18. halcyon

    halcyon Senior Member

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  19. duncan

    duncan Senior Member

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    I am sorry you embrace the same logic as Hip that I need credentials for Lyme as a conduit to ME/CFS. Where is that list of qualifications or requirements to be found?

    Your second study is borderline meaningless. Do you even know who Krupp is, and what his significance is? If you did, you'd asterik any study from him.

    The first - yes, cool study. What can you infer from it? I could argue that all it demonstrates is that Bb CSF proteins can be culled from the greater pool of ME/CFS proteins. What would happen if Natelson et al went through the same exercise and looked solely for HHV-6 proteins, or EBV, or coxsackie B etc?

    More to the point, you are likely comparing apples and oranges - they only included 2T positive PTLDS, if I am not mistaken, so these were arguably people infected with active Lyme - not ex Lyme patients who now have full-blown ME/CFS. So at best, they possibly have evidence that Lyme is different from the global population of ME/CFS - not that Lyme cannot trigger ME/CFS.

    Here is some friendly governance to all looking at the Lyme/ME relationship: Don't conflate Lyme with ME/CFS. Don't mistake PTLDS for post-Lyme. There is absolutely no reputable study that proves Lyme cannot cause ME/CFS, anymore than there is for any of the other conditions Hip noted. And don't take your eye off the ball - the point here is where Bb may eventually lead, not the possible stepping stones along the way.
     
    Last edited: Jul 16, 2015
  20. halcyon

    halcyon Senior Member

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    The "logic" is called science. We as patients can't pile them in together due to the way we feel about it. A scientific reason to do so needs to be found. As pointed out in the first study, post-treatment lyme may be a subset of CFS, but it needs further study. In the meantime we shouldn't treat them as the same because there is no reason to do so.

    Sorry, I have no interest in lyme disease so I'm not aware of who all the players are. Those were literally the only two relevant studies from the single page of search results in Pubmed. If there is a link, it doesn't appear that many people are interested in studying it.

    I can infer that we need to be careful about treating them as the same because it could skew research results. Does it say that those are Bb derived proteins? My impression is that they are measuring human produced proteins, not foreign proteins.
     

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