Any link between Gilbert's Syndrome & Lyme

It can be a general inflammation response , not just lyme, if you have the genes associated with Gilberts.

There are actually two specific defective genes for this. So that mean if you have one of these, some general inflammation or illness could express them (switched on). If they are expressed, than Gilberts can happen. Some people fluctuate with this per blood test.

I have not had any testing done, but both my primary care doc and LLMD say I have it. My bilirubin levels are always elevated while all other labs are okay.

BrookieGirl said...
Hi Gang,

Just curious if any of you have been diagnosed with Gilbert's Syndrome. It's a fancy name for elevated levels of bilirubin in your blood. Let me know if there seems to be a link!

Thanks in advance 😁

Yes, I was diagnosed when I was a teenager...I had gone to the Dr. as there was a yellow tinge to the whites of my eyes.

I am now wondering if I had a smoldering bart infection since childhood. We had many cats and I had some bad cat bites...lots of flea bites (fleas and all biting insects LOVE me)

So, when I went on lyme treatment...my liver enzymes climbed (including the bilirubin) - so my LLND had me take a break for 2 1/2 months.
Then after that break, my liver enzymes were in range...i then went on Bartonella protocol..and my liver enzymes continued to drop and have not risen again since.

So, why after all those years of elevated bilirubin would it go down into range after bart treatment?

That is over 2 years ago now.

My GP says something like "Your bilirubin can go up and down when you have Gilberts'

BUT....it has never been in range before - until bart treatment. It's not going up and down...it went down and stayed down.

In a nut shell, if you have double copies of a UGT1A1 gene, (I know of 8 variants of this) and lyme or co-infection "activated/expressed" this gene, Gilberts is very likey to happen to you. I am proof.

It would be interesting to see if its gone (de-activated), I think it was finally last year, after decades of lyme.

/en.wikipedia.org/wiki/Gilbert%27s_syndrome

Post Edited (astroman) : 3/15/2018 10:31:09 PM (GMT-6)

BrookieGirl said...
Astroman, so it's safe to assume if you have Gilbert's Syndrome you typically have harder time being able to detoxify general toxins that the general population can get rid of?

You are doing better with Lyme these days?

Thank you again for the response.

To what extent of detox issues this can create, is what we dont know. Not much is known about Gilberts, although there are a couple devoted forums/blogs that people made, nothing ground braking is on them yet. The fact that this is on a typical blood test, means its somewhat important even Dr dont know how/why LOL.

This is part of liver phase I detox pathway, of which there are also many more possible gene defects associated in that pathway, in addition to yet even more in liver phase II detox pathway. The more of these you have, the more it can complicate detoxing. I have my share, and detoxing was difficult. Jaundice without ABX is a sign of just normal liver detox issues.

I function better, but when you had this for a major portion of your life, hoping for 100% improvement is asking a lot. As you age, what symptoms were from lyme and what might not be gets a little harder to define.

23and me provides the raw data, the pay decode sites will show/interpret these.

Some people just want to feel better, some also crave answers and links to things. With a science background, I like answers to puzzles. Will it cure you, no, somewhat answer some general health questions otherwise never known about ? yes.

There are even known genes that make T cells "expressable", (I posted this last month) which is not good for us. It still requires research on your side , but its a start. 23/me just does the raw data per law- they cant tell you what it means. Enter the dedcoding web sites. There are more recouces for this than even a few years ago. The free decode sites have minimal gene info,but a good start. A $50 decode provides a lot of genes.

I used to occationally almost fall over in the 90's. It went away before ABX. As an outdoor kid and adult, I cant count how many times I was bitten since the 70's. I did get a bullseye in the early 90's, that lasted almost two months, with a cascade of symptoms following and changing, waxing/waining the next decades. Was real bad again starting 04/05, started llmd 2013.

Thing about lyme is it brings out the worst in you. Other health issues surface and become magnified the longer you have this. Thats how gene info is useful- but its also a never ending project.

In the 90's, I was very active in an athletic sense. I was sore, but as long as I kept moving my younger brain and body was able to just deal with it.

After I retired from my sport, and trained less (mid 2000's) this stiffness became worse. Standing was a little weak and tingly feeling in the legs and lower back, and became painfull after maybe, standing 15 minutes or so. **They never gave out**, but I also had more developed muscle than average which might have helped me.(?)

I still dont like standing (never did) in the morning, it gets better as the day goes on, but I'm way stronger.

When this got real bad, not to long ago - What I learned is you need to keep moving. Couching was needed, but then moving after is a must. I learned a lot of muscle rolling techniques. Those firm fitness body rollers circulate blood in the legs. Tighter areas I used a LaCross ball. Tender areas a tennis ball.

*****UPDATE******

So i have only been treating Lyme and Bartonella since early February 2018 and for the first time in 6 years my bilirubin levels are normal. I just had some lab work done last week. 9 weeks of treatment and it ended 6 years of elevated bilirubin levels I'm definitely thinking there is a correlation between the two.

Just wanted to share. Keep fighting friends... keep staying positive.

BrookieGirl said...
*****UPDATE******

So i have only been treating Lyme and Bartonella since early February 2018 and for the first time in 6 years my bilirubin levels are normal. I just had some lab work done last week. 9 weeks of treatment and it ended 6 years of elevated bilirubin levels I'm definitely thinking there is a correlation between the two.

Just wanted to share. Keep fighting friends... keep staying positive.

That's what happened to me...after treating.

I wonder if most people who have high bilirubin have lyme and co's - and the Docs are just labelling it Gilbert's syndrome...for lack of knowledge.

What a coincidence. Last night I looked through 15 years of labs from yearly physicals, with high bilirubin (Gilberts). The only time it was normal was when I was on ABX. I have not had that retested last year.

BrookieGirl said...
I think we're onto something! I'm currently on doxy 400mg

Europe Drs have proven that ABX is to some extent, a noninflammatory too. So ABX might be helping something else that lyme or even other things triggered.

All who commented are/were on ABX at one point.

I wonder if herbal lyme treatment "corrects" Gilberts too?

astroman said...

BrookieGirl said...
I think we're onto something! I'm currently on doxy 400mg

Europe Drs have proven that ABX is to some extent, a noninflammatory too. So ABX might be helping something else that lyme or even other things triggered.

All who commented are/were on ABX at one point.

I wonder if herbal lyme treatment "corrects" Gilberts too?

Good observation and question. I guess we'll have to wait and see. If anyone treating with herbs only reverses it, hopefully they will post about it.