Discussion in 'General ME/CFS News' started by Kalliope, Oct 9, 2019.
Funny how the doctor in the article admits lyme disease exists but the only true misdiagnosis is when someone actually has "CFS" and is told they have Lyme disease.
Oh the irony that she doesn't understand that CFS is not a diagnosis.
"As you dont have lyme disease I am going to dump you under a syndrome label that is basically a pseudo scientific dumping ground for lazy and useless doctors who refuse to utter the words, "I dont know".
This quote seems to track back to this article by Dryden: https://www.ncbi.nlm.nih.gov/pubmed/24814098
The concern over the use of long-term IV antibiotics seems to be that it potentially makes it more likely that a treatment-resistant bacterial strain will emerge, and there have been issues with that noted in the past. The article also proposes an alternative name for "chronic lyme", which also seems valid. [tho I've just been told by someone who knows a lot about LD that it's not!]
The problem is that the way all this is being communicated and disseminated is supremely unhelpful because they never provide a complete picture and rely so heavily on innuendo and outrage.
So they should test positive for a Western blot, a standard test to detect acute Lyme disease?
I suspect many chronic Lyme disease patients do not meet this requirement (or they had the test several times until it had a positive result). I suspect in many cases the diagnosis is made based on poorly validated diagnostic tests offered in Germany or symptoms or immune markers thought to be specific for Lyme.
Most of which are never tested for, mostly because there are no tests for most of them. We keep discovering new ones too.
I have seen claims that CD57 abnormalities indicate Lyme/tick-borne illness but I also saw some ME/CFS studies finding abnormalities in this area.
A couple of observations: First, chronic Lyme is a poisoned diagnosis. Discard it. The question is does a patient have Lyme disease.
Second, the Western Blot and the C6 and other ELISA's only test for exposure. That's it. It is very very rare to know if a patient's Lyme is active or not, outside of an EM rash. PCR's wont' necessarily confirm it, and direct culture is really restricted 999 times out of a 1000 for EM rashes - and if you have the bull's-eye, why culture it? The bulls-eye IS diagnostic unless you live in Kansas or Missouri or another midwest US state.
Third, you can tell if you've been exposed to Lyme without having to satisfy the CDC five band IgG requirement or two band IgM requirement.
Screw other tests until they are validated, imo.
Now, the C6 has additional merits should you test positive with it, ie, you can track the efficacy of treatments supposedly with it. But not so much in late stage cases. But that's all another story.
CD 57 abnormalities are not restricted to Lyme, so it reduces this metric utility. This is like CXCL13 in CSF of Lyme patients: there seems to be a coorelation, but it's not proven to be specific to Lyme.
Hard to argue with that. Not the pan, the fire instead. No one is being helped other than for politics.
Just to be clear... I was stating the IDSA's position. But I absolutely do not agree with it. There's evidence of persistence post-treatment and there's also clear evidence of long-term physiological issues but IDSA has just denied that it can be related to Lyme if there was what they deem "adequate" treatment.
I live 10 miles from Lyme, Ct and have had a number of relatives and friends severely impacted by Lyme. They've gotten the same denial, runaround and mistreatment as people with ME. The doctors who have tried to help these patients have been harassed and in one case I was a party to, called a criminal by another doctor who was tied to IDSA guidance authors. That doctor argued that the patient was just depressed and slammed me for refusing to accept it.
On the Tick-borne disease WG - yes, I've seen the concerns with Shapiro and where the WG might be heading
Truly at the epicenter. All the lines radiate out from your location. Cool on a curious level, but scary for you and your friends and family.
Dr Patrick has published a number of studies on ME/CFS.
Is the IgeneX set of lab tests considered better than the Armin ones?
Ok. Then arguably little excuse for referring to our disease as chronic fatigue?
Different types of tests, if I recall. In a way, apples and oranges. Also, I've lost track of the set of tests in Igenex's portfolio. I personally have never used them. I know Western Blots, so, I lean that way. IgeneX tests for two strains, while most labs test for solely one: B31.
dr Peterson, Dr Klimas and others have been heard saying the chronic fatigue words.
Shame on them, too, if true. How many long-term patients would err that way?
It is safe to say that most patients with ME are super sensitive about how their disease is being called, but from experience, there will be those less connected to the forum and facebook communities that still call their disease ‘chronic fatigue’- sometimes because this is how their un-connected doctors call it. I have also met people on mobility scooters who admitted their doctors did not give them the name of their disease, but simply said they could no longer work and would have to take it easy for the rest of their days. And of course the unnamed disease started with a virus and affected levels of energy, and so on.
I remember Dr Abhijit Chaudhuri also using it in a TV interview.
"Chronic Fatigue Syndrome" is quite a mouthful to keep repeating; I'd recommend anyone who does this to use CFS instead.
Are you suggesting it should not be important to patients that their disease be labeled as accurately as possible, and without mistakes that would lead to mischaracterization of their disease? Do you consider it being important as being "super sensitive"?
ETA: In the context of the last 15 or more years of BPS BS, it is unacceptable that any ME/CFS expert refer to our disease as chronic fatigue. Inexcusable.
Look. I am a patient, have been for a while now. What i meant is that some people want their disease called myalgic encephalomyelitis, while others don’t mind it called ME/cfs. What i said is that there are people out there who are calling their disease ‘chronic fatigue’ and don’t even know that others like you and me cringe when hearing that.
End of explaining. This is getting off-topic by the way.
A US Lyme forum has picked up the story. Not a lot of posts yet, but still interesting. If anyone cares to see how the other side of the coin sees the debate:
Separate names with a comma.