Do Chronic Lyme Patients experience Post-Exertional Malaise?

[msf]

And visa-versa.

Visa or vice?

 

[duncan]

So, my only excuse, @msf , is that I am walking proof of the mental deficits wrought by both ME and neuroborreliosis...

 

[msf]

Sorry, I only mentioned it because your posts are usually so well-written, and because I thought you might be making some sort of pun about the strong geographical influence on attitudes to ME and Lyme.

 

[duncan]

I wish. You literally made me chuckle at myself. I had to google vice versa...I am shaking my head as I key this in - and grinning.

 

[Mel9]

I definitely have a Borrelia infection and, even though the Lyme disease symptoms are decreasing with long term antibiotics, experience PEM 12 to 34 hours after physical exertion.

I try to pace (keep my heart rate below 120 bpm) to avoid PEM. A normal PEM keeps me in bed for around 2 days.

So, do I have both Lyme and ME (mild)?

 

[cigana]

Because if PEM *is* present in chronic Lyme disease, or Post-Treatment Chronic Lyme, then it would seem to be almost indistinguishable from ME/CFS, and thus may actually be the same thing, with the only difference being that those arriving at ME/CFS through a Lyme path had Borrelia as their triggering event rather than the more common viral trigger. I'm happy to hear any thoughts or references you lot can share on this.

The paper by Schultzer gives fairly strong evidence that PTCL and MECFS are different diseases
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287

 

[duncan]

The paper by Schultzer gives fairly strong evidence that PTCL and MECFS are different diseases

Are you sure?

Maybe it just suggests that late stage Lyme is different than some ME/CFS. Or perhaps it discriminates between one type of ME/CFS and all the others.

Natelson and Coyle and Fallon and Schutzer - it's certainly an interesting fellowship. Perhaps I'd feel a little better about the study if they had done a better job with the names of the two diseases at the very beginning of the paper: late stage Lyme instead of PTLD, and ME/CFS instead of Chronic Fatigue.

 

[Mel9]

The paper by Schultzer gives fairly strong evidence that PTCL and MECFS are different diseases
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017287

Thanks, this is an interesting paper.

I haven't had a chance to read it carefully but a few things stand out for me regarding selecting the subjects

1) the ' cfs ' patients were chosen by the '1994 definition of cfs'. Do they mean the CDC Fakuda definition? The SEID definition would probably have been more specific for ME CFS. There seems to be no evidence of PEM: were patients with PEM excluded?

2) we need more information about the fatigue and pain expert who selected the patients. Is this person an expert in ME CFS?

 

[pattismith]

Seems like the answer is: yes, some do, and those patients often end up being diagnosed with ME too. Since a significant proportion of forest rangers have evidence of Lyme infection, I doubt it precludes everyone from doing exercise. My own ME was triggered by Yersinia Enterocolitica, which is also one of the triggers of Reactive Arthritis; I haven´t heard of PEM being one of symptoms of ReA, but as Duncan suggests, I doubt the rheumatologists are paying much attention to the possibility.

How do you know that Yersinia E is the triggering factor for you? Were you diagnosed with active YE infection ?
I have myself Ig G for YE, but Ig G can be still present after an old infection, so I can't say if it could be related to my disease...

 

[msf]

I was lucky in a way, because I would think you would have to be pretty set on your own theory to overlook the evidence for Yersinia E infection in my case (I initially suspected a herpes virus, but changed my mind when the evidence became overwhelming).

1. I had the classic Yersinia symptoms from literally the day I fell ill (check my blog part 1 if you want details).
2. I was IgA positive for the next 3 years, with ongoing Yersinia symptoms.
3. After receiving treatment for it last year, my last Yersinia symptom disappeared and my general functioning improved to the point where I was able to work again.

I am going to have a test in a few weeks to see if the this treatment managed to kill it off or merely suppress it for a time.

 

[Mithriel]

Post exertional malaise is actually a bad name for what we get as it can be interpreted many ways. Anyone who digs the garden at the weekend will have a PEM the next week.

Many diseases, Ms, RA there is a fatigue component that cuts in when they do too much and my friend with cerebral palsy found that movement was so difficult for her that she often had to take to her bed exhausted.

But all of that is different from ME, though we can get that as well. In ME, people often only know they have done too much three days or more later. The CPET testing accounts for that because if you can do less the next day, then less the next, the next you might not have enough energy to do anything.

Also, if I walk too much, the first sign is often a sore throat, NOT a pain in my legs. Then again, reading a complicated book can stop me walking. That is why it is called systemic in SEID.

I think that we are the only disease where the aerobic system is broken, so we slip into anaerobic mode very easily. This forms waste products which are removed by the aerobic system but ours is broken so recovery is prolonged adn so on.

In other diseases, people have a functional aerobic system but they use up their capacity because of the illness, then have to go anaerobic and feel bad until their working aerobic system clears everything up. Looks similar but isn't.

I once worked myself to a complete paralysis by turning a dial trying to get a radio to work. This is not something that is common in other illnesses.

Mithriel

 

[perrier]

Post exertional malaise is actually a bad name for what we get as it can be interpreted many ways. Anyone who digs the garden at the weekend will have a PEM the next week.

Many diseases, Ms, RA there is a fatigue component that cuts in when they do too much and my friend with cerebral palsy found that movement was so difficult for her that she often had to take to her bed exhausted.

But all of that is different from ME, though we can get that as well. In ME, people often only know they have done too much three days or more later. The CPET testing accounts for that because if you can do less the next day, then less the next, the next you might not have enough energy to do anything.

Also, if I walk too much, the first sign is often a sore throat, NOT a pain in my legs. Then again, reading a complicated book can stop me walking. That is why it is called systemic in SEID.

I think that we are the only disease where the aerobic system is broken, so we slip into anaerobic mode very easily. This forms waste products which are removed by the aerobic system but ours is broken so recovery is prolonged adn so on.

In other diseases, people have a functional aerobic system but they use up their capacity because of the illness, then have to go anaerobic and feel bad until their working aerobic system clears everything up. Looks similar but isn't.

I once worked myself to a complete paralysis by turning a dial trying to get a radio to work. This is not something that is common in other illnesses.

Mithriel

You are quite astute in your description. And it is this very symptom that my daughter can no longer endure. And it is this symptom that is hardest to explain. And there is no medication for this.

I'm trying to make a list based on what posters here indicate of PEM busters. Is there a PEM preventor?

This symptom is lie an abuser.