Just saw that a few others on lymenet have this and was wondering if many with lyme also have the genetic Gilbert's syndrome.
[ 08-31-2009, 05:43 PM: Message edited by: lightparfait ]
Posted by ukcarry (Member # 18147) on :
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].
Carry
Posted by Truthfinder (Member # 8512) on :
What is Gilbert's syndrome? I don't recall seeing anything about that one - must have missed it.
Posted by lightparfait (Member # 22022) on :
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.
Posted by Truthfinder (Member # 8512) on :
Thank you, Miss LightP. Posted by ukcarry (Member # 18147) on :
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,
Carry
Posted by lightparfait (Member # 22022) on :
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.
Posted by ukcarry (Member # 18147) on :
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.
Posted by yanivnaced (Member # 13212) on :
I always show elevated bilirubin readings outside of normal range during routine bloodwork. It's always been that way for me.
Not sure what it means though - maybe liver damage?
Posted by liesandmorelies (Member # 15323) on :
Yes! I have Gilberts or so they say.
Who knows if it's really Gilbert's or just Lyme related, as so many Lyme patients have elevated Bilirubin levels.
It would be interesting to know how many here have elevated bilirubin levels pretty consistently. I have had this for four years now.
Posted by UnexpectedIlls (Member # 15144) on :
it could be a sign of Gilberts Syndrome...
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???
Posted by lightparfait (Member # 22022) on :
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...
Posted by lymielauren28 (Member # 13742) on :
I also have consistently high bilirubin levels....
Posted by seekhelp (Member # 15067) on :
Me too. I always have high bilirubin levels. My ID doc suspects this genetic condition and says no big deal.
Posted by Leigh Rivera (Member # 21801) on :
me too, had it for years.
But today my Dr said he thinks I just got Lymes over the past few months. So who knows!
Posted by disturbedme (Member # 12346) on :
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....
Posted by Tracy9 (Member # 7521) on :
My son, 14, congenital Lymie, has Gilbert's Syndrome.
Posted by lightparfait (Member # 22022) on :
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!
Posted by lightparfait (Member # 22022) on :
Anyone else have Gilbert's?
Posted by ukcarry (Member # 18147) on :
Lp, I will be very interested to hear whether AI does indeed affect your son's bilirubin levels,
Carry
Posted by lightparfait (Member # 22022) on :
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!
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