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

[el_squared]

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).

Yes, I'm just annoyed by the people who declare that that Lyme is THE ANSWER, etc. I understand the human impulse to have an answer, but the truth is with chronic lyme the picture is pretty murky. Someone on here just said, Oh I was diagnosed with CFS and it turns out I had Lyme all along. Then she lists EBV, etc, all these viruses which are the prevailing basis for the CFS diagnosis. People are confused. Best to admit confusion.

 

[goldberg]

Oh I was diagnosed with CFS and it turns out I had Lyme all along. Then she lists EBV, etc, all these viruses which are the prevailing basis for the CFS diagnosis.

Lyme causes virus to reactivate because it weakens the immune system.

I don't know what percentage of people diagnosed with CFS have lyme. I know that misdiagnosis is a big problem with lyme disease because the testings are not reliable. Researchers involved in HIV research were somewhat surprised at the fact that ELISA is still used in lyme testing. It is an '80 technology, which is long surpassed in HIV testings.

The situation is really complex with people from the lyme community overplaying its role in other diseases and people from the CFS community downplaying it.

My personal experience is that most of the people that I know received a diagnosis of Lyme disease. I am talking about an official diagnosis. These people are getting better.

But this is just an anedocte, real science is not made with little samples and personal experiences.

 

[el_squared]

Lyme causes virus to reactivate because it weakens the immune system.

I don't know what percentage of people diagnosed with CFS have lyme. I know that misdiagnosis is a big problem with lyme disease because the testings are not reliable. Researchers involved in HIV research were somewhat surprised at the fact that ELISA is still used in lyme testing. It is an '80 technology, which is long surpassed in HIV testings.

The situation is really complex with people from the lyme community overplaying its role in other diseases and people from the CFS community downplaying it.

My personal experience is that most of the people that I know received a diagnosis of Lyme disease. I am talking about an official diagnosis. These people are getting better.

But this is just an anedocte, real science is not made with little samples and personal experiences.

Hi, So the people you know who are being treated for Lyme and getting better -- how are they being treated? So far I'm starting slowly on an herbal protocol (Buhner). thanks, Laura

 

[JES]

I don't know what percentage of people diagnosed with CFS have lyme. I know that misdiagnosis is a big problem with lyme disease because the testings are not reliable. Researchers involved in HIV research were somewhat surprised at the fact that ELISA is still used in lyme testing. It is an '80 technology, which is long surpassed in HIV testings.

The the degree of overlap in diagnosis also depends on the diagnostic criteria that was used to make the CFS/ME diagnosis. Post-exertional malaise is hallmark of CFS/ME and it's pretty much the only disease that has this effect. Fatigue of course often occurs in Lyme disease, but nothing I've read suggests that Lyme patients are suffering from the kind of huge post-exertional malaise that makes people bedbound for days after exercise, or at least it's not a diagnostic hallmark with Lyme patients unlike with CFS/ME. Also the likelihood of catching Lyme depends where you live because Lyme ticks don't exists in certain regions like the Sahara desert, whereas with CFS/ME there seems to be no locations reported where the disease doesn't exist.

 

[Grigor]

Always interesting topic.

Check this article. Apparently Lyme has more in common with Lupus than ME.
Small study though. But still

http://simmaronresearch.com/2016/08...nic-fatigue-syndrome-mecfs-are-they-the-same/

 

[duncan]

Cort seems to pretty much assume that IDSA-recommended treatment kills off Lyme. Big assumption. Worse, he appears to embrace the theory that PTLDS is really a thing. But what if PTLDS were merely a political construct, with mainstream Lyme stalwarts being unwilling to admit that conventional treatments are frequently unable to resolve late stage Lyme?

In that sense, at least, PTLDS potentially has a lot in common with CFS: Both possibly are artificial labels meant to subsume real diseases -- PTLDS for late stage Lyme, CFS for ME.

 

[Mel9]

The the degree of overlap in diagnosis also depends on the diagnostic criteria that was used to make the CFS/ME diagnosis. Post-exertional malaise is hallmark of CFS/ME and it's pretty much the only disease that has this effect. Fatigue of course often occurs in Lyme disease, but nothing I've read suggests that Lyme patients are suffering from the kind of huge post-exertional malaise that makes people bedbound for days after exercise, or at least it's not a diagnostic hallmark with Lyme patients unlike with CFS/ME. Also the likelihood of catching Lyme depends where you live because Lyme ticks don't exists in certain regions like the Sahara desert, whereas with CFS/ME there seems to be no locations reported where the disease doesn't exist.

I think I have both Lyme and Me Cfs but not sure because it is all so confusing.
My main symptom was huge PEM

Years after getting sick I noticed ACA rashes that led me to be tested pos for Borrelia and long term antibiotics are working.

I wonder if there is some sort of interaction between problems with immune system and Lyme, so that those with the faulty genes react worse with Borrelia from ticks?

But - It would seem logical to suppose the same might happen with other infectious agents, not only Lyme Borrelia.

 

[duncan]

The degree of overlap in diagnosis also depends on the diagnostic criteria that was used to make the CFS/ME diagnosis.

True. The same holds true for criteria for Lyme. Allen Steere's disease is tightly defined, with narrow criteria, but many believe this only applies to a strain or two of Bb, and there are literally hundreds of strains. Broaden the diagnostic net for Lyme just a bit, and contract that of ME/CFS and the two are virtually indistinguishable. For instance, what is the difference between ME and Lyme Encephalomyelitis?

Also the likelihood of catching Lyme depends where you live because Lyme ticks don't exists in certain regions like the Sahara desert, whereas with CFS/ME there seems to be no locations reported where the disease doesn't exist.

So, tighten up your definition of ME/CFS, exchange Borrelia for Lyme, and see how the geographies play out - remember, too, that wherever birds fly, Borrelia can be found.

@Mel9, there are a number of us on this forum that have been diagnosed with both Bb and ME/CFS. As for the immune system: Both corrupt it, one by effect, the other by definition (if you accept Lipkin and others). There is absolutely no reason, pragmatically, a person cannot have both.

 

[TheChosenOne]

According to Buhner, the Borrelia bacteria have been found on Antarctica.
Ticks are not the only animals that transmit Borrelia. Mosquitos and spiders are thought to be able to transmit the disease as well.

 

[JES]

You can catch Malaria in Europe as well with extremely bad luck, but it's practically not a disease anymore in Europe. As with Malaria, I would presume Borrelia is much more common in certain parts of world than others, so you would obtain clusters with different disease prevalence, whereas with CFS/ME all reports I've seen suggests prevalence is roughly similar everywhere in the world.

 

[duncan]

I would presume Borrelia is much more common in certain parts of world than others

Why? I tend to agree that there will likely be uneven distributions, but I am not sure. Lyme appears to be not evenly distributed, but I don't place much faith on who is monitoring its presence. And do not forget that Lyme is only one form of Borrelia. If known vectors involved can be found virtually anywhere, and if other transmission routes are now also being suggested, and if diagnostics are primitive, why presume this?

with CFS/ME all reports I've seen suggests prevalence is roughly similar everywhere in the world.

Can you cite any? As I recall, there have been some comparisons of ME/CFS to MS distribution, and that certainly is not an even distribution. But admittedly that was several years back.