Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I was doing some searching yesterday and not sure now if I'm remembering correctly, but think you had mentioned the red crescent in back of mouth that can be a symptom of lyme.
I think Dr Cheney says this is also part of M.E.
M.E. sound pretty scary and doubt that I could have that, but am I correct that the red crescent can mean either M.E. or CFS?
I'm thinking he said people with lyme don't have M. E. Can't find the article today.
I hadn't checked in a while, but I still have the red band on both sides of the back of my mouth when I looked yesterday. My LLMD mentioned it was there in January.
I'm assuming when one gets well it goes away.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
I always presumed M.E. and CFS were one in the same. I thought the M.E. term started in England. I read once where Dr. Cheney said CFS and Lyme have identical symptoms. So that is very telling.
I think Cheney is doing a disservice to the CFS community by not exploring Lyme disease in his patients. Or at least he didn't use to. I don't keep up with him anymore.
Seem he has always been more into treating the symptoms then getting to the root of what is causing the problem. Probably because he doesn't carry malpractice insurance. Or at least he didn't use to according to a Dr. friend of mine who knew him well. About the red band many of us have viral problems along with lyme so I just don't see that as a telling sign of distinguishing cfs/m.e./lyme.
Posts: 805 | From Utopia | Registered: Feb 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ME is Myalgic Encephalomyelitis; CFS is Chronic Fatigue Syndrome.
They are exactly the same set of symptoms. ME is what it is called in the U.K. and Canada. CFS is what it's called in the U.S.
CFS involves a large set of symptoms but once lyme is diagnosed, the CFS label falls away as chronic fatigue and all the symptoms of CFS are distinguishing factor of lyme (as well as of some other chronic stealth infections).
Myalgic Encephalomyelitis is a symptom and, yes, one that lyme patients usually have. Usually, then it's called lyme encephalopathy or lyme encephalomyelitis.
The crimson crescents in the back of the throat can be CFS of undetermined origin - or lyme, which would then be CFS that had become more well defined.
Once a person who had been diagnosed with CFS/ME is diagnosed with lyme, the CFS/ME diagnosis is long longer correct.
Yes, chronic fatigue (as a symptom) is a huge factor but it is not the defining diagnosis once an infection is found to the be cause.
posted
Thought I would add my 2 cents. Having had CFS for years, the crimson red crescents were always a hallmark of CFS. A few months ago I attended a lyme conference and Dr. B. spoke about the crimson crescents, and said they were significant in lyme patients.
It was as though it was a new finding....
Posts: 964 | From san diego | Registered: Oct 2009
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Thanks for all your input.
It's good to know ME is the same and not a more serious disease.
I know I had high EBV titres when I started with LLMD in 2006. And when I brought my test results to my new (at the time) PCP, he asked when I had had mono (never) and commented that the numbers were very high.
So I'm thinking of olive leaf extract and oreganol to try to knock it out, now that I know it's viral.
Especially interesting that Dr B is now talking about the crescent with lyme.
Thanks all.
Posts: 1297 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I had a horrendously sore throat for 20 solid years, starting in college with "mono" (which also had lyme and bartonella features but I had no clue what all the symptoms meant).
Each time a doctor took a look, I was told my throat looked fine. I was just shocked as it felt like a razor blade was stuck there.
When I first read the article years ago about the crimson crescents, I looked - and I found that on both SIDES of my throat.
Yes, the back of my throat looked okay but I was shocked that no doctor in a 20-year time span would have considered looking at the SIDES of my throat. They never believed the fatigue and full body pain. But it was hard to accept that they could not see the pain in my throat.
What doctor, in their right mind, would not have looked at the SIDES of a person's throat who explained a blood sore throat?
I will always be thankful for the detail on the crimson crescents whether it is to be a distinguishing marker of whatever exactly CFS/ME is, or (in my case) a more definable lyme complex. It's nice to know there is proof of the pain.
And - I'm glad to say that for several years now, my throat is only sometimes that razor-sharp sore. At those times, the crescents are much more pronounced but still, my GP looks right past them and says my throat looks fine. Amazing. I'm just still too tired to mention this, shrug, and get back on the Allicin that helps the most. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I never have a sore throat, it just feels slightly irritated. I've attributed that to allergies, but now think it's due to the crescent.
It would be interesting to know what percentage of lyme patients have it since 80 per cent of CFS patients have it, but not all lyme patients have fatigue.
This article written in 1992 mentions that Drs usually look right past it as you mentioned Keebler.
posted
Dr B is a very distinguished and respected doctor, obviously, but he doesn't know everything. Just because he notices something in Lyme patients, it doesn't mean that "something" is due to Lyme.
The crimson crescents could indicated CFS, a separate condition. One can have both (!), but if XMRV is involved, this is the underlying issue, as the immune system is not able to mount an appropriate response to eliminate the Lyme.
My take on it anyway.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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