ME/CFS or lyme

[BurnA]

Tested how? Borrelia tests are notoriously unreliable. As for Babesia and Bartonella, the situation is even worse. I don't think there are valid tests for any of these infections.

Ok sorry. But can I ask if the tests are so bad how would it be determined that this patient actually had these ?

 

[Sidereal]

Ok sorry. But can I ask if the tests are so bad how would it be determined that this patient actually had these ?

I don't know. We don't know anything about this case beyond the one sentence description. She may really have these infections based on testing, history and signs & symptoms. Or the tests could be false positives and therefore wrong explanations for why she got worse on RTX. It could be that she just got worse from RTX because the drug happens to make some people with a diagnosis of ME/CFS worse, who knows. OMI has never published outcomes from their clinic even though they've been prescribing this drug for years and have surely treated more patients by now than the published Norwegian studies.

 

[msf]

That´s why I don´t think the Ritux and Lyme findings are in completely separate subsets - because it is likely that there has already been some overlap. As I recall, there was actually a patient in the last Ritux study whose illness had started with Lyme. I might be remembering someone else, but I think she (could have been a he) was one of those who had been in a previous study, and that she was a responder the first time but not the second (or the other way around). Who knows if this person still had Lyme? It seems likely to me that the Ritux studies have already included others whose illnesses were triggered by Lyme as well.

 

[duncan]

Babs could be confirmed via a smear, but odds are against this happening.

As for Lyme, short of a culture, it's an odd(s) game.

I think the same holds true for bartonella.

I would be nervous about trying Ritux.

 

[BurnA]

That´s why I don´t think the Ritux and Lyme findings are completely seperate subsets - because it is likely that there has already been some overlap. As I recall, there was actually a patient in the last Ritux study whose illness had started with Lyme. I might be remembering someone else, but I think she (could have been a he) was one of those who had been in a previous study, and that she was a responder the first time but not the second (or the other way around). Who knows if this person still had Lyme? It seems likely to me that the Ritux studies have already included others whose illnesses were triggered by Lyme as well.

I am fairly sure Lyme was not mentioned in the open label phase II trial as a cause of onset.

 

[Sidereal]

It seems likely to me that the Ritux studies have already included others whose illnesses were triggered by Lyme as well.

I agree but I think we need to make a distinction between Lyme-triggered ME/CFS (where there is no longer a Borrelia infection, just some kind of autoimmune process or whatever) vs. a situation where someone actually has a chronic Borrelia infection but was given a diagnosis of ME/CFS.

 

[Sidereal]

I am fairly sure Lyme was not mentioned in the open label phase II trial as a cause of onset.

It was in one patient, a non-responder:

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898#sec016

 

[BurnA]

It was in one patient, a non-responder:

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898#sec016

My bad. Sorry again.

 

[msf]

I just checked, and what I wrote about the Lymee in the last Ritux study was correct. Other interesting details: she only had ´mild´ CFS, and her family did not have a history of autoimmune disease. Another interesting detail: the last study actually included 3 patients (10% of the patient group) who had actually already been diagnosed with autoimmune disease.

 

[msf]

Haha, you guys beat me to it. The really interesting thing though is that, as I noted above, she was a responder in an earlier trial.

 

[msf]

And 20% of the Ritux group in the first trial had been diagnosed with an autoimmune disease.

 

[BurnA]

I just checked, and what I wrote about the Lymee in the last Ritux study was correct. Other interesting details: she only had ´mild´ CFS, and her family did not have a history of autoimmune disease. Another interesting detail: the last study actually included 3 patients (10% of the patient group) who had actually already been diagnosed with autoimmune disease.

This trial is the most data we have on rtx however on such a small patient group it is impossible to draw any conclusions. I have read that table many times trying to see a pattern but there is nothing I could determine.

Until we see the phase 3 results and maybe more trials after that, we won't be able to spot any trends I think.

 

[msf]

I know, I was just pointing out that the results so far aren´t incompatible with the idea that Ritux can help those whose illness was triggered by Lyme.

 

[Marky90]

2/3 improve on ampligen too. Ampligen seems to have a positive effect on infections and probably lyme too. Its known to increase nk function in cfsme, cd57 nk cell is said to be low in lyme, ampligen may improve this cd57 nk numbers ? ?

Just a thought??

There is bound to be a percentage of people diagnosed with ME/CFS who actually have active infection(s) of some sort. I'm surprised no one's died yet from RTX.

Its because most infections can be treated with steroid or IVIG. I think many with ME/CFS actually have undiagnosed CVID

 

[msf]

I don´t think you want to treat them with steroids, especially if they are also being given Ritux.

 

[Marky90]

I don´t think you want to treat them with steroids, especially if they are also being given Ritux.

Actually this was done with success in a patient who went into remission, then got very ill with infections, and after steroids got 100 %.

 

[msf]

Really? I haven´t heard of steroids being used to cure infection before. Ritux and steroids together seems to increase the risk of serious infection.

 

[Marky90]

Really? I haven´t heard of steroids being used to cure infection before. Ritux and steroids together seems to increase the risk of serious infection.

Yeah but i think the dr. said it was to reduce the potency of rtx, cant completely remember.

 

[Marky90]

Maybe @Jonathan Edwards has an idea

 

[gregh286]

Hey guys!

As I am starting rtx-treatment i a month,I want to be reasonably sure that I can`t have lyme (as rtx. the would be a bad idea ,surely).

I have zero neurological symptoms other than bad concentration, can you have lyme still?
Can not remember any tick bites, nor subsequent rash

ME started with exercise intolerance.

Thoughts?

Thanks!

Hi marky.
Which clinic is doing the treatment?
All the very best with it. Wish you well.