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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do you have crimson crescents?

Do you have crimson crescents?

  • I have them and I tested positive for XMRV.

    Votes: 6 5.0%
  • I don't have them and I tested positive for XMRV.

    Votes: 2 1.7%
  • I have them and I tested negative for XMRV.

    Votes: 4 3.4%
  • I don't have them and I tested negative for XMRV.

    Votes: 0 0.0%
  • I have them and I have not yet been tested for XMRV.

    Votes: 94 79.0%
  • I don't have them and I have not yet been tested for XMRV.

    Votes: 13 10.9%

  • Total voters
    119

Hip

Senior Member
Messages
17,824
@skatardrummer
What you have your throat certainly looks like a classic example of crimson crescents, which are found in the majority of ME/CFS patients.

Cunha 1992 found crimson crescents in 80% of ME/CFS patients, but less that 5% of people with sore throats had these crescents. Someone here said crimson crescents are also present in Lyme disease, mononucleosis and lupus, but does not provide any source for his statement.

The poll attached to this thread found 87% of forum members responding to it had crimson crescents.

Cunha suggests that crimson crescents are a useful tool to aid diagnosis of ME/CFS. Though normally ME/CFS diagnosis is performed using criteria such as the CDC Criteria for ME/CFS, or the Canadian Consensus Criteria.

Note that anemia can cause symptoms similar to ME/CFS, so I would wait until you have your anemia sorted out before you jump to any concussions about having ME/CFS. In fact in the Canadian Consensus Criteria, anemia is specifically mentioned is something that would exclude you from an ME/CFS diagnosis (until your anemia is fixed).



An article on the crimson crescents found by Burke Cunha:
Crimson Crescents Facilitate CFS Diagnosis
By Robert B. Marchesani

Infectious Disease News, November 1992

MINEOLA, NY—A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about a clinical way to diagnose the disease.

Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them.

"When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, N.Y.

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients.

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said.

Cunha' s crimson crescents are located on both sides adjacent to the back molars. (See figure.) They are present as a crescentic membrane of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson-purple and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other, Cunha explained.

When someone has a tonsillectomy, the borders of the crescent become less distinct and the margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha.

They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder.

"In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said.

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha.

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine.

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources.

"But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained.

"If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said.

Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News.

This article was reprinted by The CFIDS Association of America, Inc. publisher of The CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 11, November 1992.


Source: http://www.immunesupport.com/93sum007.htm
 
Messages
5
Hi Hip, thanks for the reply

Note that anemia can cause symptoms similar to ME/CFS, so I would wait until you have your anemia sorted out before you jump to any concussions about having ME/CFS. In fact in the Canadian Consensus Criteria, anemia is specifically mentioned is something that would exclude you from an ME/CFS diagnosis (until your anemia is fixed).

The Anemia is for life. I had a digestive surgery in 2008 and I have to take iron supplements. I guess it's difficult to explain properly, having been low enough to have the doctors argue whether or not I needed an infusion, the exhaustion from Anemia is a lot different than the exhaustion I feel from this. The Anemia exhaustion directly correlates with oxygen not being properly distributed through the bloodstream and causing palpitations. My heart feels like trying to start a car that wont start, and then I get dizzy and almost black out. With it comes a general fatigue, nausea, vertigo, and chest discomfort. I've been dealing with the Anemia for a couple years now. What I've been experiencing lately is a chronic joint and muscle pain, and almost an inability to stay awake earlier in the morning. I'm usually fine after about 10:30am and then feel tired again around 3. Then I have difficulty sleeping at night. I can go weeks on end only sleeping 4 hours a night without actually crashing once I get home. I fight falling asleep at work or in the mornings on weekends. It's difficult to explain, but it's an entirely different feeling and the Anemia isn't near danger point at the moment, so I can't attribute it to that. That's why I've been trying to figure out what else is going on. The dr isn't concerned about my hemoglobin numbers at the moment. The things with the throat have nothing to do with Anemia at all so far as I can tell. I've been getting it recurringly without being sick. They're always there, but they get darker and are painful sometimes for no reason, and I'm usually extremely tired when that happens.

I have enough going on with my health and I don't want to bring something to the dr that's not exactly a difinitve "we can test for that" condition. Luckily I have a dr that takes things seriously with me, because I have a bad habit of waiting too long to get help until it ends in ER visits or surgery. I had too many doctors when I was younger dismiss me because I was young and say I was crazy. My doc saved me when people blew me off when I was having kidney pain and I had a total blockage by the time I couldn't take it any more 2 months later. My kidney swelled 1.5 times normal size. She caught it. I know that should make me have more faith to bring things to her, but I've just had so much run around with things in the past I'd rather not say anything til I have a good reason to show something maybe changed.
 

Hip

Senior Member
Messages
17,824
@skatardrummer
If your only (additional) symptoms are chronic joint and muscle pain, and sleepiness in the morning, then I would be looking for other possible causes, like hypoglycemia perhaps. You can buy a blood sugar meter to test. I am not ruling out ME/CFS, but ME/CFS involves quite a few more symptoms (a brief summary of common ME/CFS give at the top of roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments).
 
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Messages
5
@skatardrummer
If your only (additional) symptoms are chronic joint and muscle pain, and sleepiness in the morning, then I would be looking for other possible causes, like hypoglycemia perhaps. You can buy a blood sugar meter to test. I am not ruling out ME/CFS, but ME/CFS involves quite a few more symptoms (a brief summary of common ME/CFS give at the top of this roadmap document).

Well as I had listed in the first post, I already experience abdominal and ibsd type issues, migraines, brain fog comes with fatigue. I grew up with ADD. I mean, most of thus seems like things ive just always had to deal with. I experience everything on this list, but all those things could be attributed to pretty much anything. The joint pain, muscle aches, and crescents are the things distinguishing it from any other condition. None of those are explained by anything else combined with everything else on the list. Even with the anemia, those things are not characteristic. Just fatigue. I guess I'll have to talk to the doc and see what she says.

Thanks for your thoughts!
 

Hip

Senior Member
Messages
17,824
@skatardrummer
You could try some ME/CFS treatments that seem to benefit many patients, such as low-dose naltrexone, vitamin B12 injections or sublingual tablets, methylation protocol, oxymatrine, or inosine. There is extensive info about each on this forum.
 

A.B.

Senior Member
Messages
3,780
@Jonathan Edwards what do you think about crimson crescents? Are these a real abnormality? Do these also appear in autoimmune disease as some have claimed?

I have crimson crescents, and my disease was not triggered by an infection.
 
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A.B.

Senior Member
Messages
3,780
Those are crimson crescents, right?
 

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Sea

Senior Member
Messages
1,286
Location
NSW Australia
What I've been experiencing lately is a chronic joint and muscle pain, and almost an inability to stay awake earlier in the morning. I'm usually fine after about 10:30am and then feel tired again around 3. Then I have difficulty sleeping at night. I can go weeks on end only sleeping 4 hours a night without actually crashing once I get home. I fight falling asleep at work or in the mornings on weekends. It's difficult to explain, but it's an entirely different feeling and the Anemia isn't near danger point at the moment, so I can't attribute it to that.
Hi skatardrummer, welcome and sorry to hear you are not well.
If this is a picture of your ongoing situation then it would seem that your symptoms, including pain, can be explained by sleep deprivation. As to why your sleep is messed up, that is a question that has several different possible answers. Chronic Fatigue syndrome is one possibility but I wouldn't say that your picture clearly fits the criteria.

I also wouldn't be too quick to dismiss the anemia. A condition that becomes chronic can often have different effects on the body over time and also feel very different to how it felt in the acute stage. The anemia doesn't need to be at danger point for it to give you symptoms. What is the underlying basis of the anemia? Iron deficient? Pernicious Anemia? Autoimmune anemia? Different causes will have somewhat different effects and may give you clues as to what else your body needs to be restored. Have you had blood tests which show your mean cell volume (MCV)?

Although medical summaries tent to focus on iron in its role of tranporting oxygen throughout the body it actually has more than one role. It is also involved in the production of various enzymes which the deficiency of can cause problems.
 
Messages
25
Location
Altadena, CA
Hey all. I may be too late on this post. But from this picture, does it look like I have the CC? My throat has been like this at least for the last 3 months. I also developed geographic tongue and canker sores within the last three months. My body is rebelling. :)

image.jpeg
 

Paralee

Senior Member
Messages
571
Location
USA
I had them. I heard they were related to hypothyroidism. Fat tongues, too, sometimes have scalloped edges. I've about got my thyroid pretty good, I need to see if I still have the crescents. Thanks for the info.
 

Paralee

Senior Member
Messages
571
Location
USA
Where did you read that?

Hip,
I believe on a thyroid forum. I don't know for sure if it's true or not, that's why I said "I heard" although I should have said "I read". If I've heard or read something I'll throw it in the mix, I don't propose to know a lot, but I have heard/read a lot, and sometimes I actually remember. :)
 

Hip

Senior Member
Messages
17,824
I believe on a thyroid forum.

From some experience that we on this forum have had with thyroid forums, some patients who think their only issue is hypothyroidism may in fact have ME/CFS as well as hypothyroidism. Hashimoto's thyroiditis (an autoimmune condition) is more prevalent in ME/CFS.

We found that on thyroid forums, some members of those forums have a political stance and belief that the disease of ME/CFS does no exist at all (which of course angers people here), and believe that all ME/CFS is just misdiagnosed thyroid problems. This belief is complete nonsense, but that is what they think.

I think part of the reason they believe this is because some patients with both ME/CFS and hypothyroidism may have had their hypothyroidism undiagnosed for years (especially in the UK, where doctors are often quite lackadaisical and negligent in their testing and treatment of ME/CFS patients).

When patients finally get their thyroid disorder diagnosed and treated, they feel better. So then these patients may erroneously jump to the conclusion that all their symptom were due to thyroid problems; but the fact that they are not fully better after thyroid treatment indicates that their problems are not all just due to thyroid dysfunction.
 
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Paralee

Senior Member
Messages
571
Location
USA
Double thanks, Hip, all I had done so far was look in my mouth, I think. I went to search and there are tons of articles of crimson crescents and ME/CFS.
 

Hip

Senior Member
Messages
17,824
I suffer from post finasteride syndrome (PFS). We seem to have these crimson crescents too

Very interesting.

Do many people with PFS report a viral infection episode some weeks or months prior to the initial onset of PFS symptoms? As you may know, ME/CFS is very often triggered by a infectious episode, such as a flu-like illness, a gastrointestinal illness, or a bad sore throat.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I had a viral episode early on, but I was already in a slow decline at that point, the virus just accelerated it. I can trace a lot of my symptoms in milder forms to 10+ years before what I would call the beginning of my ME. I have very pronounced crimson crescents.
 
Messages
7
I'm not aware of PFSers talking about viral episodes. Some people look into parasites and lots of us seem to have them, but I'm not sure if they would have this effect
 

Paralee

Senior Member
Messages
571
Location
USA
@Hip , that's why a person should not "marry" just one health problem. I've seen a lot of forums that think the only way is their way, and twist the facts around them.

I got on here to see if CFS/ME might be involved with my case, still not sure, but not 100% yet.

In any case, the amount of in-depth info here is amazing.