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Chronic lyme deniers

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Posted 8/15/2018 4:34 PM (GMT 0)
Ever since I was diagnosed with Lyme and bartonella I had become more aware that part of the medical community is convinced that chronic Lyme isn’t real. That the infection does not last that long and that there is no proof it exists for that long. The other day I was with someone who felt the need to tell me that lyme can’t be chronic and that’s not what’s making me sick. It was really insulting and frustrating that so many people are in denial of chronic Lyme.

I experienced this with other doctors I had visited as well before I was finally diagnosed with Lyme.

I don’t know what cases or studies their are in support of Lyme being chronic but of course there are so many people who deal with it including many other people I know. If anyone has links to those studies that would be really insightful and helpful to look at.

Has anyone run into this conflict with people?
Posted 8/15/2018 7:24 PM (GMT 0)
I have experienced it.

I changed the way i talk about it to the medical community, i dont call it lyme anymore. i call it tick-borne diseases. if they dont understand what that is, then i say bartonella, babesia, ehrlicihia, borellia infections.

the medical community is not interested in learning in my opinion, they are just interested in following a standard protocol. so when this comes up, most of them don't know or dont want to deal with it. I think its a waste of time to try to get them to align their beliefs or thought process around this.

LLMDs have found a niche market, such that there is a large void with care here, such that sick people will do anything to try to get better.
Posted 8/15/2018 9:00 PM (GMT 0)
Yes, have absolutely run into this problem. It's part of the reason I was misdiagnosed for over 9 years with CFS/ME. I try not to dwell on the subject of this whole denial of persistent lyme problem because it really upsets me. I don't need to convince people of the reality I'm living.

There are studies out there showing persistence of borrelia after lengthy abx treatments. Dr Liegner has a big book and he documented some of his cases, including spinal taps that showed active borrelia in patients he had treated for many years.

There's a list somewhere online documenting a multitude of studies looking at the persistence of borrelia. I'm unable to track it down right now, I'll see if I can find it at some point.

(edit) Found it! /www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

Post Edited (sebreg) : 8/15/2018 3:03:18 PM (GMT-6)

Posted 8/16/2018 3:05 PM (GMT 0)
Fortunately most researchers have started moving away from dismissing persistent Lyme disease since Hodzic and Embers studies on persistence came out in a variety of animal models. Or at least I've been seeing the attitude change in both mainstream reporting and scientific discussion. Unfortunately medicine is always like 20 years behind science.

The main argument has now moved to whether CLD is an unhelpful term as many patients don't have evidence of Lyme disease. I have mixed feelings on that one. It's true in the sense that I'm sure many patients with the CLD diagnosis probably don't actually have it and have some other bacterial infection which is why they respond to similar treatments and have similar stories. It's not like lyme is some super pathogen, plenty of things out there can cause this sort of disease. So if we want to be scientifically correct it's best to be ambiguous about what we call it. On the other hand, it's the only diagnosis that is getting patients with idiopathic inflammatory diseases antibiotics. People like me would have been slapped on immunosuppressants for something that requires antibiotics simply because nobody could put a name to it. It walks like a duck (lyme) and quacks like a duck. But I don't have proof it's a duck, so we have to start over at ground zero. Wait for scientists to find other types of water fowl that cause the same illness before I can get treated probably the exact same way. But who's got time to suffer like that? Treat it like CLD and it disappears. I think I'll keep doing that thanks. Regardless of whether the diagnosis is politically correct.
Posted 8/16/2018 7:44 PM (GMT 0)
This is a great, recent, article on the flawed science behind people who dismiss chronic lyme. It is well sourced and published on a site with good reputation. Show this to anyone giving you a hard time. If they still won't even consider the possibility after reading it, then nothing will change their minds:

https://slate.com/technology/2018/06/the-science-isnt-settled-on-chronic-lyme.html
Posted 8/17/2018 2:26 AM (GMT 0)
I’m not speaking my label Lyme anymore. Chronic MSIDS is my only label. If someone cares enough to ask for clarity I just read off my long list of fun.
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