ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Good for you for starting the thread, Lp.
As you know, Unexpected ills has it and so does my son [I almost certainly had Lyme when he was conceived and we are not aware of any other family member having it].
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
What is Gilbert's syndrome? I don't recall seeing anything about that one - must have missed it.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
What is Gilbert syndrome?
Gilbert Syndrome is a common, harmless genetic condition in which a liver enzyme essential to the disposal of bilirubin (the chemical that results from the normal breakdown of hemoglobin from red blood cells) is abnormal. The condition has also been referred to as constitutional hepatic dysfunction and familial nonhemolytic jaundice. The enzyme abnormality in Gilbert syndrome results in mild elevations of bilirubin in the blood, particularly after starvation or dehydration.
What causes Gilbert syndrome?
Gilbert syndrome is the result of a genetic mutation in the promoter region of a gene for the enzyme UGT1A (one of the enzymes called UGT glucuronosyltransferases that are important for bilirubin metabolism). The gene is located on chromosome 2. Other types of mutations in the same gene cause the Crigler-Najjar syndrome, which is a more severe and dangerous form of hyperbilirubinemia (high bilirubin in the blood).
People with two copies of the abnormal promoter region for the UGT1A gene (one inherited from each parent) have Gilbert's syndrome and elevated bilirubin levels, suggesting an autosomal recessive mode of inheritance. This means that both parents require the gene for expression of the abnormality in the offspring.
Gilbert syndrome is a frequent finding in people in the United States and Europe. The condition is usually detected serendipitously (purely by accident) in the course of routine blood screening.
What are the symptoms of Gilbert syndrome?
The elevated bilirubin pigment can sometimes cause mild yellowing (jaundice) of the eyes. People with Gilbert syndrome are otherwise entirely normal with no other signs or symptoms. Their liver enzyme levels in blood serum are also entirely normal.
Gilbert syndrome is most commonly diagnosed after puberty, when alterations in sex hormone levels cause the blood bilirubin levels to rise. Situations that aggravate elevated blood bilirubin levels (such as fasting, destruction of red blood cells, or illnesses) may be the initial factors that cause the patient to seek medical attention.
What is the treatment for Gilbert syndrome?
There is no need for treatment, and the prognosis (outlook) is excellent.
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thank you, Miss LightP.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Some people on Gilbert's syndrome patient sites do seem to complain of some symptoms, often chronic fatigue ones, but my son seems to be in normal health and does sport [tennis].
Our GP said to follow sensible lifestyle choices to avoid putting the liver under pressure and to mention the condition whenever a drug is being prescribed for something in case it is contraindicated.
Have you thought about whether it would be wise for your son to have Tamiflu or the new Swine flu vaccine, Lp? It's something I'm not sure about,
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Yes,...I think about this regularly, as he is in the Army now! He will most likely be forced to take the shot! Tracy is helping me with some remedies!
I told him not to take it if he has a choice. He does not have lyme disease or any lyme symptoms! But I am giving him the AI therapy, just to see if it could help with any inherited problems...including Gilbert's syndrome. It would be nice to stop the cycle of passing this on to future generations!
WE will see!
We first found out he had Gilbert's when he played competative tennis, in the noon 95 degree heat, and feeling he had heat stroke! He gets dehydrated easily! He forgets to take electrolytes to prepare sometimes.
As I have KPU or HPU, I was wondering about any connection? Also any connection with others who may have some sort of inherited disregulation, not life threatening, but just enough to cause an imbalance that could set them up for chronic illness or imflamation.
This all just seems connected the more I understand with the KU, AI , and most of what we all are going through with our symptoms.
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
That's a worry for you, the enforced shot, I mean. Mine says he'll make up his own mind [about the vaccine], but I doubt that he'll research properly, so all I can do is tell him what I think and leave it to him.
Strange that our sons are both keen on tennis too!
If I see benefit with AI, I'll definitely encourage Dan to do it too and probably my husband.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
This happened to me so long ago... but I think the reason we found out was because my skin and eyes were SO yellow.. We thought something was seriously wrong... I went to teh ER and the stupid doctor told me to stop eating so many carrots and then finally someone/dr. said it was Gilberts syndrome and that my liver wasnt breaking down bilirubin properly... and that it was a benign condition..
BUT, what if it does set you up for future illness.
My mom was saying this illness is so strange for me because I was barely sick when I was a child and growing up... No one in my family really has any illness except for cancer, and my mom who has fibromyalgia and many other health issues...
I mean my garndfather is 65 and barely has gray hair and still rides his motorcycle... He can run circles around me...
I was very healthy up till my pregnancy.. I wonder if this gilberts has anything to do with this???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Thanks for posting your thoughts!
It seems that Gilbert's syndrome or the abnormal Bilirubin level is an indication that something is throwing our bodies out of balance, whether genetic or acquired? I am curious how many chronically ill people with CFS. lyme and all have this problem?
Just another indication for young people who find they have this with no other symptoms..to be on guard and keep their immune system strong to fight other possible imbalances?
Would love others to post their thought...
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I also have consistently high bilirubin levels....
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Me too. I always have high bilirubin levels. My ID doc suspects this genetic condition and says no big deal.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
But today my Dr said he thinks I just got Lymes over the past few months. So who knows!
Posts: 50 | From nj | Registered: Aug 2009
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I had a high bilirubin for half a year or so... I was getting really worried.... but then it stopped and went back to normal. Not sure what it was, or what caused it....
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My son, 14, congenital Lymie, has Gilbert's Syndrome.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
My son is doing the AI therapy, so we will see after completion if there is any change with the bilirubin levels.
I would love to find a research group to study the inherited connections like Gilbert's with chronic illness.
I think this is just another indication that something is out of balance!
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Anyone else have Gilbert's?
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Lp, I will be very interested to hear whether AI does indeed affect your son's bilirubin levels,
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I will have him blood tested after completion of the AI therapy...when he is on leave at home. It may be over a year before I can get this test!
Posts: 1009 | From NJ | Registered: Aug 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic