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

[u&iraok]

´we don´t even know enough to know what we don`t know´.

One of my favorite sayings.

But I definitely value reading everyones' opinions and understandings.

 

[el_squared]

Thank you, belatedly, for your thoughtful response. The culture after 16 weeks is positive. I'm going to talk to the doctor about it tomorrow.

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.

 

[prioris]

Approaching the disease from the Lyme perspective is not a problem but the real danger is using antibiotics. I would never use Cipro or broad spectrum antibiotics. One never knows what damage an antibiotic may cause.

I wouldn't even bother with Lyme testing unless convenient. I would just do some of the less toxic lyme protocols to see if that helps. If it doesn't, a lyme diagnosis is still useless except if going antibiotic route. In the end, I think it is about experimenting.

 

[msf]

On the other hand, I may well have never got ME if I had taken a course of Cipro right at the start of my illness (in rats Cipro taken in the first week cleared Yersinia infections, which is what I had/have). However, I think the longer you have been ill, the less likely it is that a course of antibiotics will clear any infection you have, so the risk/benefit calculation is altered, although many people on this forum do claim that antibiotics have had a positive effect on their symptoms.

 

[JES]

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.

Yep, that would make more sense. Statements like "90% of fibro/CFS is Lyme" makes no sense to start with if we consider it as caused by Borrelia Burgdorferi tick, since those ticks only exists in certain regions of the world. As far as I know, there is no data to suggest CFS/ME is limited only to those same regions.

 

[Hugo]

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.

I did so to before and they can get kind of paranoid. But I got Lyme when I already had ME, probably thats why it hit me so hard. Usually I think pain is involved, my ME was nearly no pain at all before. So I think lyme has a big part in some of us but its just one factor though of many.

 

[msf]

Yep, that would make more sense. Statements like "90% of fibro/CFS is Lyme" makes no sense to start with if we consider it as caused by Borrelia Burgdorferi tick, since those ticks only exists in certain regions of the world. As far as I know, there is no data to suggest CFS/ME is limited only to those same regions.

This is a controversial issue though - B.b has been reported on every continent except Australia, and on remote Antartic Islands. Of course, those reports are controversial, just as everything to do with Lyme is.

 

[prioris]

On the other hand, I may well have never got ME if I had taken a course of Cipro right at the start of my illness (in rats Cipro taken in the first week cleared Yersinia infections, which is what I had/have). However, I think the longer you have been ill, the less likely it is that a course of antibiotics will clear any infection you have, so the risk/benefit calculation is altered, although many people on this forum do claim that antibiotics have had a positive effect on their symptoms.

minocin did cure my FMS which i had for many decades about 15 years ago in a week. the theory on minocin is that it helps the immune system. most generics minocycline won't work. antibiotic wise, it is a narrow spectrum antibiotic so did not wipe out all the flora in my intestine. i took it for 2 years straight to see if i could get better.

i paid $60 for 60 tablets back in 1999. the same tablets would cost over $1500 now. this drug was patented back in 1972. the price gouge was done intentionally by drug company that bought the drug to essentially remove it from the market. insurance doesn't cover it. even their low income program has impossible requirements to get assistance for. they developed another drug to replace it. original lederle minocin was used by a lot of chronically ill people but financially few can afford it anymore. many are currently using minocycline made by either Teva or Ranbaxy in NJ.

another thing that has complicated the issue is that the name minocin is licensed out so minocin doesn't mean the original lederle minocin anymore.

on the negative side, there are people who developed neuropathy although not sure if this was from the original lederle minocin.

most minocycline is poor quality and useless for chronic disease. look on the internet and you will see how this or that antibiotic destroyed their life especially Cipro. it's a double edged sword for some people. people need to be aware.

i wouldn't get too infatuated with the name of the disease especially when it comes to treatment. i would experiment with different things. no harm in seeing and trying what people who consider themselves as having lyme are doing.

 

[JES]

another thing that has complicated the issue is that the name minocin is licensed out so minocin doesn't mean the original lederle minocin anymore.

most minocycline is poor quality and useless for chronic disease. look on the internet and you will see how this or that antibiotic destroyed their life especially Cipro. it's a double edged sword for some people. people need to be aware.

A generic drug means it has the exact same chemical formula as the original, meaning that it is identical or bioequivalent. That is what any pharmacist will tell you. There are people who believe that the patented and the generic drug versions are different, I've seen no evidence at all to support that.

Minocycline is a microglial inhibitor, it's probably this anti-inflammatory effect that makes it useful for CFS/ME, just as with Valcyte.

 

[prioris]

A generic drug means it has the exact same chemical formula as the original, meaning that it is identical or bioequivalent. That is what any pharmacist will tell you. There are people who believe that the patented and the generic drug versions are different, I've seen no evidence at all to support that.

Minocycline is a microglial inhibitor, it's probably this anti-inflammatory effect that makes it useful for CFS/ME, just as with Valcyte.

one would think so but it seems to be how it is delivered. lederle minocin was pelletized time release form.
why that works and other doesn't has always mystified me.

large number of anecdotal reports don't lie. doctors who prescribe it for chronic diseases will even acknowledge. it is what it is.

i can buy 30 minocycline capsules of ranbaxy for less than $30. i can buy 30 lederle based minocin capsules for over $1100 and can't even be sure if it is the same minocin anymore. apparently even the company who owns the rights to the original lederle thinks it's different.

Just to get an idea of the change of ownership of the drug .. here is a snippet

Wyeth had good reason to want to get Minocin out of the way. Since buying Minocin from Lederle, Wyeth sold distribution rights to Triax, then Onset Dermatologics and now to Valeant…the latter three, all dermatological pharmaceuticals, which hiked up prices to create a marketing buzz around Minocin for cystic acne, cleverly sent Minocin well out of the way from competing with the new blockbuster drug for RA, Enbrel:

some years back, it wasn't easy to google who the new owner was.

The company for all practical purpose replaced Minocin with Enbrel ... i was trying to remember the name of this. Both cost the same amount. the price gouging should have been a crime. no insurance covered the cost of it either.essentially you have to be financially well off to get it. medicare doesn't cover it either.

I did get RA also a few years ago so I used $5 box of borax to quickly cure (3 weeks) my RA. I remember I was on day 19 thinking it wasn't working and saying oh no... then presto on day 20 i could feel the RA dissolving away. i was relieved. estimates are that borax will work for 70% of RA people.

i'm sure those companies would like to own the rights to borax so they can charge $1200 for 7 tsp of 20 mule team borax laundry detergent ... lol

 

[msf]

A generic drug means it has the exact same chemical formula as the original, meaning that it is identical or bioequivalent. That is what any pharmacist will tell you. There are people who believe that the patented and the generic drug versions are different, I've seen no evidence at all to support that.

Minocycline is a microglial inhibitor, it's probably this anti-inflammatory effect that makes it useful for CFS/ME, just as with Valcyte.

Unfortunately this doesn´t explain why some people with ME have improved on antibiotics other than Minocycline or Azithromycin. If you have read the Hanson study, it is quite clear that antibiotics would have an effect on this illness, seeing as antibiotics (as we all know) have a strong effect on the gut.

 

[Daffodil]

@JES my local ID specialist says one would have to take massive amounts of an antibiotic to improve just from its anti-inflammatory properties

 

[prioris]

@JES my local ID specialist says one would have to take massive amounts of an antibiotic to improve just from its anti-inflammatory properties

it is not clear why an antibiotic will work. doctors only regurgitate what they are taught. it takes empirical usage. the guy who pioneered antibiotics for RA way back when found that for one particular antibiotic that when he injected it, it did not work. when he gave it in oral form, it did work. he concluded that some metabolite got created.

 

[prioris]

Unfortunately this doesn´t explain why some people with ME have improved on antibiotics other than Minocycline or Azithromycin. If you have read the Hanson study, it is quite clear that antibiotics would have an effect on this illness, seeing as antibiotics (as we all know) have a strong effect on the gut.

i think there would be different reason for why different antibiotics work. plus you throw in the persons individual health situation into the mix.

 

[Horizon]

I've had limited success with doxycycline. It's either fighting Lyme or another bacteria or modulating the immune response.

 

[chilove]

I was misdiagnosed with fibro and CFS for many years. I found out 3 years ago its actually Lyme disease and co-infections, mycoplasma, EBV, mold, etc.... I think that in most cases CFS/ME is actually stealth infections

 

[JES]

I was misdiagnosed with fibro and CFS for many years. I found out 3 years ago its actually Lyme disease and co-infections, mycoplasma, EBV, mold, etc.... I think that in most cases CFS/ME is actually stealth infections

It also depends by what criteria the CFS/ME diagnosis is made. If the diagnostic criteria requires PEM (post-exertional malaise), then it's much less likely to be misdiagnosed with CFS/ME. Because even though fatigue is common in Lyme disease, the delayed response massive crash following exercise is pretty unique to CFS/ME and CFS/ME only.

 

[Mel9]

It also depends by what criteria the CFS/ME diagnosis is made. If the diagnostic criteria requires PEM (post-exertional malaise), then it's much less likely to be misdiagnosed with CFS/ME. Because even though fatigue is common in Lyme disease, the delayed response massive crash following exercise is pretty unique to CFS/ME and CFS/ME only.

This is what confuses me. I had severe PEM for over 4 years before starting to recover 8 months ago with a Borrelia (Lyme) antibiotic regime. The antibiotics made me so much better I no longer need to go home and lie down at lunch time (I have worked throughout my illness)

This week I have done three 20 min walks (feeling very frightened about the consequences) but there was NO PEM afterwards.

Does this mean my PEM was caused by the infection?

 

[Valentijn]

Does this mean my PEM was caused by the infection?

There's been studies showing ME to be triggered by a variety of infections. It wouldn't be particularly surprising if Lyme is one of them. I test positive for Lyme, but also have distinctive ME symptoms which are not Lyme symptoms. So I consider myself to have both Lyme and ME.

Hopefully treatment can make all of the Lyme bits go away, but I'm less optimistic about ME, since studies have shown that at least some ongoing triggering infections are not involved.

 

[Mel9]

There's been studies showing ME to be triggered by a variety of infections. It wouldn't be particularly surprising if Lyme is one of them. I test positive for Lyme, but also have distinctive ME symptoms which are not Lyme symptoms. So I consider myself to have both Lyme and ME.

Hopefully treatment can make all of the Lyme bits go away, but I'm less optimistic about ME, since studies have shown that at least some ongoing triggering infections are not involved.

Thaks very interesting Valentyne.

So you still have severe PEM even though you are being treated for Borrelia?

I must say it took me many months to get rid of the PEM (and it might come back, something I am very afraid of). This is the first time in years I am mostly upright on weekends.

I am wary that this may merely be a remission leading to me overdoing physical activity and eventual worsening again. So no rushing into my previous active lifestyle for me.