posted
I have seen both of these terms. I see more of the "chronic Lyme" on here and the ILADS sites. What is the difference ? If there is a difference, are the treatments different ? Is there anyone on this board with "late-stage"LD ?
I have never been diagnosed with LD and have never been treated. However, I have been sick with the sx for many years. I know there is a ton of controversy between LLMDs and the medical est'bmt. Just want to have my facts straight so I can make sense of what I am being told.
Posts: 41 | From SC | Registered: Jan 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Chronic Lyme" or "Late-stage Lyme - mean the same thing. The only difference between them and untreated is that many Chronic or Late-Stage patients have had treatment and the condition still persists. No need for labels IMHO - it's all Lyme.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Yep. I would say the terms are interchangeable. Maybe most here would rather not call it late stage lyme. Sounds worse than chronic....but it's all the same.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Late-Stage Lyme Disease is the term used by physicians who follow IDSA guidelines. It is an "untreated or in the process of being treated" patient who has traditional definitions of heart block or bell's palsy, etc.
Post-Lyme Syndrome is a patient who has been treated for Lyme Disease, whether the patient was in the first stage or last stage -- or diagnosed with Chronic Lyme Disease -- who continued to have symptoms of various kinds after standard treatment was discontinued. This term is almost universally used by IDSA members and physicians who support their position.
Chronic Lyme Disease is "sometimes" interchangeable with Late-Lyme Disease by patients and advocates -- even LLMD's. However, Chronic Lyme Disease is strictly a term used by physicians who believe in a persistent ongoing infection being the underlying cause of the patients Lyme Disease in-spite of adequate antibiotic therapy based on the IDSA guidelines. It is also used by IDSA physicians when stating "Chronic Lyme Disease does not exist, there is no evidence etc." -- That is the summation.
In the end, the term Lyme Disease itself isn't even acceptable given it's already pre-defined by short-sighted researchers who defined it prior to understanding it fully.
When you define a disease you don't fully understand, and discard anything else the patient may be experiencing outside of the limited scope of the definition, you will inevitably find patients remain sick, and thus Post-Lyme Disease Syndrome was born.
In my opinion, anyone who reaches Late Stage Lyme Disease by the traditional method -- will have chronic Lyme Disease as a consequence of the infection have enough time to disseminate through the body.
Given the complex nature of multiple infectious diseases and other comorbid processes that take place during Chronic Lyme Disease, a more appropriate term for patients with more than just the predefined "Lyme Disease" which is strictly associated with borrelia, would be Chronic Lyme Disease Complex."
That's just my opinion.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Pretty much the only non-chronic Lyme, according to what I understand, is that which is caused by the rash-only strains; according to the IDSA poisoners themselves, once the spirochetes have been in your CNS for a week (and they get there within the first 6 hours), you're stuck with them. You can find the documentation on lymecryme.com.
That being said, the earlier your treatment starts, the better your prognosis is.
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