Wednesday, April 15, 2009

Lyme diseast or Carcinoid tumor?

I am finally seeing my old doctor, Dr. Randall Craig. He is the only Reproductive endocrinologist in all off Arizona. He referrs to himself as the only Medical Sherlock Holmes left in Arizona. He's right. He hasn't been covered by my insurannce so I've seen everyone but him. Well, I finally decided to see him out of pocket. On the bright side, he dropped his fee by more then 50% and now we're covered by Aetna and he takes that so I only had to pay once. Once, he heard my symptoms and the results of the test that have already been taken his first diognostic ideas are either Lyme disease or a Carcinoid Tumor.

Turns out Carcinoid tumors usually show up in your small intestine. They create different symptoms depending on what or who's body they are in. He said that Carcinoid tumor are the greatest imitators. They imitate all the wrong things your body naturally does. More specifically your hormones. If you have cushings disease that causes you to overproduce Cortisol a carcinoid tumor will imitate that. Then the next day it can imitate something else and throw all new systems out of wack. Because there is no petuitary gland to stop it, it just wreaks havoc on every system in your body. Especially if you already have bad systems like I do.

Good news is that an instant cure for this is to remove the tumor. Yay! Bad news is that if the tumor has reached one inch in size, chances are good that it has spread. Why my gastrointerologist didn't see a one inch tumor in my small intestine and think to test for carcinoid is beyond me. Below is a little info on Carcinoid tumors.

General Information About Gastrointestinal Carcinoid TumorsA gastrointestinal carcinoid tumor is cancer that forms in the lining of the gastrointestinal tract.
The gastrointestinal tract includes the stomach, small intestine, and large intestine. These organs are part of the digestive system, which processes nutrients (vitamins, minerals, carbohydrates, fats, proteins, and water) in foods that are eaten and helps pass waste material out of the body. Gastrointestinal carcinoid tumors develop from a certain type of hormone-making cell in the lining of the gastrointestinal tract. These cells produce hormones that help regulate digestive juices and the muscles used in moving food through the stomach and intestines. A gastrointestinal carcinoid tumor may also produce hormones. Carcinoid tumors that start in the rectum (the last several inches of the large intestine) usually do not produce hormones.
Gastrointestinal carcinoid tumors grow slowly. Most of them occur in the appendix (an organ attached to the large intestine), small intestine, and rectum. It is common for more than one tumor to develop in the small intestine. Having a carcinoid tumor increases a person's chance of getting other cancers in the digestive system, either at the same time or later.

Carcinoid syndrome

Carcinoid syndrome is a group of symptoms associated with carcinoid tumor (see bronchial adenoma).
Carcinoid syndrome is the pattern of symptoms seen in people with carcinoid tumors. These tumors may occur in the small intestine, colon, bronchial tubes, or appendix.
Carcinoid tumors secrete excessive amounts of the hormone serotonin as well as other chemicals that cause the blood vessels to dilate (open). These tumors may also cause diarrhea and wheezing (asthma).
There are wide variations in the chemicals secreted by these tumors, and the symptoms depend on the mix of chemicals made by the particular tumor.
Normally, an amino acid called tryptophan is used by the body to make niacin and certain proteins, but in carcinoid syndrome, it forms serotonin instead. Most serotonin is changed by the body to 5-hydroxy indole acetic acid (5-HIAA).

The other is Lyme Disease. Me and Bryce have been camping a few times and Lyme disease could also be the problem. Lyme Disease is also curable but having been untreated for so long can have permanent effects. Here is some info Lyme Disease.

Lyme disease
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Lyme DiseaseClassification and external resources

Lyme disease, or borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1] Borrelia burgdorferi is the predominant cause of Lyme disease in the United States, whereas Borrelia afzelii and Borrelia garinii are implicated in most European cases.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Borrelia is transmitted to humans by the bite of infected ticks belonging to certain species of the genus Ixodes (the hard-bodied 'hard ticks').[2] Early manifestations of infection may include fever, headache, fatigue, depression, and a characteristic skin rash called erythema migrans. Left untreated, late manifestations involving the joints, heart, and nervous system can occur. In most cases, the infection and its symptoms are eliminated with antibiotics, especially if diagnosis and treatment occur early in the course of illness. Late, delayed, or inadequate treatment can lead to late manifestations of Lyme disease which can be disabling and difficult to treat.[3]
Some Lyme disease patients who have completed a course of antibiotic treatment continue to have symptoms such as severe fatigue, sleep disturbance, and cognitive difficulties. Some groups have argued that "chronic" Lyme disease is responsible for a range of medically unexplained symptoms beyond the objectively recognized manifestations of late Lyme disease, and that additional, long-term antibiotic treatment is warranted in such cases.[4] Of four randomized controlled trials of long-term ceftriaxone and doxycycline treatment courses in patients with ongoing symptoms, two found no benefit,[5][6] and two found inconsistent benefits and significant side effects and risks from further antibiotic treatment.[7][8][9] Most expert groups including the Infectious Diseases Society of America and the American Academy of Neurology have found that existing scientific evidence does not support a role for Borrelia nor ongoing antibiotic treatment in such cases.[10][11]

[edit] Stage 3 – Late persistent infection

After several months, untreated or inadequately treated patients may go on to develop severe and chronic symptoms affecting many organs of the body including the brain, nerves, eyes, joints and heart. Myriad disabling symptoms can occur.
Chronic neurologic symptoms occur in up to 5% of untreated patients.[17] A polyneuropathy manifested primarily as shooting pains, numbness, and tingling in the hands or feet may develop. A neurologic syndrome called Lyme encephalopathy is associated with subtle cognitive problems such as difficulties with concentration and short term memory. Such patients may also experience profound fatigue.[22] Other problems such as depression and fibromyalgia are no more common in people who have been infected with Lyme than in the general population.[22][23] Chronic encephalomyelitis, which may be progressive, may involve cognitive impairment, weakness in the legs, awkward gait, facial palsy, bladder problems, vertigo, and back pain. In rare cases, frank psychosis has been attributed to chronic Lyme disease effects, including mis-diagnoses of schizophrenia and bipolar disorder. Panic attack and anxiety can occur, also delusional behavior, including somatoform delusions, sometimes accompanied by a depersonalization or derealization syndrome similar to what was seen in the past in the prodromal or early stages of general paresis.[24][25]
Lyme arthritis usually affects the knees.[26] In a minority of patients arthritis can occur in other joints, including the ankles, elbows, wrist, hips, and shoulders. Pain is often mild or moderate, usually with swelling at the involved joint. Baker's cysts may form and rupture. In some cases joint erosion occurs.

To be honest I would be grateful for either of these two things to be the problem. They could both be made better very quickly. I take tests to figures it out in the very near future, hopefully. Keep praying for me please and keep your fingers crosssed.


Jillian said...

Hi Callie,

I just stumbled upon your blog by doing a search for carcinoid. If that is what you have, I highly suggest you search for a carcinoid specialist on I was diagnosed with carcinoid cancer in November and most doctors don't know much about the condition... and it is a very tricky condition. If you have symptoms, it has probably metastasized to your liver and it is definitely not a quick fix. I don't mean to scare you, but just want to make sure you seek out the best care if you are diagnosed with carcinoid. My fingers are crossed for you.

Best wishes,

Jen said...

Good luck with everything. I hope this doesn't become even more drawn out and that the Doctor can find out what wrong ASAP.
You & the Dr. will be in our prayers

beth said...

my nephew was diagnosed with lyme. My sister took him to the leading natural pathic lyme specialist, who happens to be in AZ (they are in NY). If you would like more info, you could email her.
good luck

Dave and Rachel said...

my fingers are so crossed for you I hope they can figure it out quickly. ur in my prayers

Caring for Carcinoid Foundation said...

I work with the Caring for Carcinoid Foundation, the leading 501(c)(3)not-for-profit funding a research program dedicated to discovering a cure for carcinoid and neuroendocrine tumors. The vision of CFCF is to eliminate
the suffering of patients, families and caregivers affected by carcinoid and related neuroendocrine tumors. To learn more about CFCF, please see
our website:, or visit our Founder, Nancy Lindholm O'Hagan's, blog at

Please do not hesitate to call or email if the Caring for Carcinoid Foundation can provide you with any information or support, 857-222-5492 or

Your sincerely,