Do I have Lyme? Do 90% of people with fibro really have Lyme?

[el_squared]

Hi there,

So I have Celiac Disease and fibromyalgia and in the past year was diagnosed with CFS after testing high for various (past) infections -- EBV, HHV6, and others.
I have also developed a neurological problem in the past year -- it began after I took Levaquin for a sinus infection.

In August or Sept. I tested negative on all bands of the Western Blot Test. But a functional medicine doctor convinced me to pay for another Lyme test, done by Advanced Laboratory Services. It'll take a while because apparently they culture the blood sample for 16 weeks.

So on another forum, on FB, which was for the drug LDN, people were making claims that 90 percent of fibro people have Lyme -- and 90 percent of CFS people have Lyme. And I questioned that. And I got booted out of the FB group.

Now, I'm open to the fact that I might have Lyme, but I sort of doubt these 90 percent of CFS/fibro people actually have Lyme. Not sure how that would be proven at this point.

What do you think of this idea? Does anyone know of the Advanced Laboratory Services Lyme test? I am new to this chronic Lyme debate and don't know what to think.

I do seem to react well to antibiotics, which could be a sign of Lyme, but I don't always react well.

Anyway, I'm really sick and lost. I am trying to take antivirals per the Stanford CFS clinic but they just cripple me.

Laura

 

[Daffodil]

hi laura. my CFS specialist found lyme in over 70% of his patients, which surprised him. you should use the newer test called the LTT ELISPOT. I was negative on every single test for years but positive on that one.

my doc says borrelia suppresses the immune system.

I took antivirals for years - toxic ones - and they did not help much...even though I got sick after "mono"

xo

 

[el_squared]

Very interesting. Who is your CFS specialist?
I'm seeing a good functional medicine MD in the Holtorf practice. She says this test will be definitive. I'll trust her for now.

 

[duncan]

Definitive?

No such thing in Lyme right now, unless you're lucky enough to test positive with a validated culture - which is very very rare (usually only happens when the bullseye is biopsied).

ALS is a culture test, but I don't think it has been validated independently yet (if it's the same one from a couple years back). So be careful if somebody tells you any Lyme test is definitive.

 

[msf]

These threads always end up with some people supporting the idea that Lyme (and other chronic infections) are responsible for various chronic diseases, and others opposing this idea. The former generally rely on circumstantial evidence and the latter more on the fact that the lack of a gold standard makes any Lyme test suspect. So it´s really whichever position makes more sense to you at the moment, although there is a prominent scientist who is testing for TBD in ME patients in the US (there is an article about it on Simmaron Rising), so the picture may be clearer in a few years - if a sizeable proportion of the ME patients in the study have some evidence of some TBD on several different kinds of tests, but not to other kinds of infectious disease, then it would suggest at the very least that something very odd (and statistically improbable) was going wrong with the immune system.

 

[msf]

Here is the article: http://simmaronresearch.com/2015/10/tea-time-at-simmaron-pt-ii-the-infectious-cluster-study/

 

[Daffodil]

i thought dr. knox was part of an HHV6 team? interesting.

3 yrs ago i heard rumor lipkin was collecting ticks too

will this all end up being tick borne disease????

 

[Valentijn]

My impression is that most people without FM or ME have no idea what FM or ME are. Some of those clueless people are diagnosed with Lyme eventually, and go on to claim that pretty much everything is really Lyme.

I tune them out, and avoid Facebook groups dominated by them.

 

[msf]

And some other people know what ME really is and are diagnosed with Lyme eventually? Or are they diagnosed with Lyme and ME?

I think anyone who says that no one with an ME diagnosis has Lyme is really putting too much trust in current Lyme testing, and anyone who says that everyone with an ME diagnosis has Lyme should realise that there are more bugs than just Borrelia out there (some of which come in the same neat, tick-sized package).

If you accept the above, then the only remaining question is what proportion of those diagnosed with ME have Lyme? I read an interview with Lipkin, where he speculated it might be 10%, from Lerner´s studies it seems to have been about 30%, and some others claim that a majority have it. All these estimates could be true since they refer to different patient populations. In the end, arguing about whether it is 10 or 50% of all those diagnosed with ME is not that relevant, since it already needs to be excluded and even if you don´t live in Old Lyme, Connecticut there is still a chance you may have it. And to categorically exclude it we need better tests.

 

[Research 1st]

Hi there,
Now, I'm open to the fact that I might have Lyme, but I sort of doubt these 90 percent of CFS/fibro people actually have Lyme. Not sure how that would be proven at this point.

What do you think of this idea?
Laura

I would say that Chronic Lyme is unlikely Classic Lyme disease caused by a tick but a novel (likely autoimmune) condition that might be found to be ''ME'' in the next few years. Inside that, a significant proportion of CFS will become that new illness.

Then we get more complicated, potentially:

This 'new' version of Lyme (e.g.autoimmune) might only apply to one subset of ME/CFS/Chronic Lyme. For example, we know that (from ME CFS research) that Slow Onset and Sudden Onset ME CFS seems to have different outcomes implying they are either subsets of the same condition, or not related at all. We simply don't know. So take that on board.

From what I can see anecdotally, there is something making people with a whole host of conditions, test positive with a Cytokine reaction for Intracellular Lyme. This is of course equally fascinating, as it is worrying. It's hard to know why, but we might have some answers when better tests are developed, such as DNA sequencing tests that can pick up not one strain, but maybe 10-20+ from a single drop of blood. The two tier Lyme test, is inadequate, we all know this and will miss many people because there are 100 strains or so of Lyme, and only a handful (5 or so) that can be tested for commercially!

What we do know is CFS can never be Lyme or ME because of how CFS is diagnosed. With CFS, all you need is self reported Chronic Fatigue and 4 or more symptoms and in the UK, just 1 additional symptom and self reported PEM. Due to this very weak criteria based on symptoms not signs observed by a doctor (subjective not objective analysis), people with ME or CFS diagnosis will inevitably find out they have many different reasons for feeling ''fatigue'' and don't share the disease or syndromes they believe they did, with others with the same illness label.

To get back to your question:

One of these conditions may be the original Lyme disease caused by the Borrelia Burgdorferi tick, and another may be the newer form that researchers haven't published on yet that appears to be associated to ''ME', or what people refer to ''Chronic Lyme'', e.g. the likely autoimmune illness, aka Post Treatment Lyme Disease Syndrome, aka, the 'persister' group, aka Late state Lyme. (All these groups have been thrown in together, subsets of Lyme, that are different to classical Lyme as these patients don't get better with short courses of antibiotics).

So in conclusion if someone believes they have Lyme, first of all they need to have signs of it, and ideally a test, or a diagnosis from a doctor. Having said that, the CDC say Lyme is a clinical diagnosis and you don't require a test, but it's helpful of course to have irrefutable proof. Thus Lyme can be diagnosed in the same manner as ME CFS - I wonder what phenomena that might lead to if Lyme and ME CFS have very similar symptoms?!

As for figures of how many people have 'it', first we need to establish what 'it' is. We can guess this will be a subset, and that subset may well me 90%, we simply don't know. However, anyone can say anything on the internet and as Valintijn says in the posts above mine, what people say online needs to be taken with a pinch of salt, because some have little knowledge about medicine and science and tend to get sucked into a 'herd' response on Facebook Twitter by others. This isn't to belittle them or disrespect other patients, it's just a human phenomena of influence, worsened by people feeling desperate and wanting answers as they want to feel better, and the official response is usually you're either making it up, or we don't know why you're sick, goodbye.

Hence the patients are left out in the cold, with no where to turn. And also 'the patients' doesn't mean they are the same patients as you or I. We will likely all end up in different subgroups with ME CFS, as the science progresses and that will apply to 'Chronic Lyme' patients also.

 

[sarah darwins]

I feel I need to roll out my (entirely made-up) Venn diagram again:



For completeness, there was a long thread about 18 months ago addressing the "is it all lyme?" question: http://forums.phoenixrising.me/index.php?threads/lyme-community-says-we-all-have-it.31767/

 

[worldbackwards]

I feel I need to roll out my (entirely made-up) Venn diagram again:

View attachment 15281

Lyme flavoured ME sounds nicer than plain.

 

[Mary]

Several years ago my doctor gave me doxycycline for a few months. I had no reaction to it at all, good or bad. Is that an indication of no lyme? or anything? Antibiotics do nothing for me, except to deal with a current infection (e.g., UTI etc.)

I don't have typical lyme symptoms, my major symptoms are PEM and hypothyroid and impaired immune system. I don't have any neurological symptoms though, no brain fog, etc., and no pain.

 

[Valentijn]

Is that an indication of no lyme?

Might depend on the dose.

 

[Mary]

Might depend on the dose.

As I recall, it was 100 mg. a day (though I might not remember correctly!)

 

[msf]

If you have Lyme then I don´t think it would even notice 100 mg a day - the cyclines are bacteriostatic at low doses.

 

[sickntired771]

I think that in some people there may be a chronic infection of lyme but for the vast majority of the post-lyme syndrome people I assume it is just another version of fibromyalgia or ME/CFS, just like post-Ebola syndrome is. If you can't find any active problem but you have this collection of symptoms that defines our disease than your immune system or something went haywire.

 

[prioris]

There have been new and improved Lyme tests for decades. In the end, it doesn't matter. You go down different treatment paths, experiment and see what helps you. There is no truly definitive test to separate these things. You can look at your history or you can use your intuition and see if that gives an answer.

 

[Vitalic]

More and more of late I have experienced people in the "Lyme community" casually asserting that CFS is just Lyme, some of these people have the intellectual rigour of a 5 year old. The only sense in which they are the same in my view is that they are both useless diagnoses exploited by charlatans at every opportunity. There probably is some overlap, but we don't even know enough to know what we don't know. Treat anyone using concrete or absolute terms in this area with the utmost suspicion.

 

[msf]

Haha, I think you beat Rumsfeld: ´we don´t even know enough to know what we don`t know´. I totally agree about people who express 100% certainty in this area - as Christopher Hitchens used to say, those people can already be discounted from the conversation (he probably phrased it better than that, but you get the gist).