Any link between Gilbert's Syndrome & Lyme

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/15/2018 3:19 PM (GMT -6)   
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 😁

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/15/2018 3:44 PM (GMT -6)   
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.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 3/15/2018 3:44 PM (GMT -6)   
I don't have it but found this in a google search.

Under Thyroid heading here www.townsendletter.com/July2014/lymeneuro0714_2.html

Discussion on another forum flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117619;p=0

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 3/15/2018 3:50 PM (GMT -6)   
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.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/15/2018 4:04 PM (GMT -6)   

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 3/15/2018 4:39 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/15/2018 4:47 PM (GMT -6)   
Wow! Thank you guys. It seems pretty clear there is a link. Astroman, your posts and input are very intriguing. Thank you!

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/15/2018 5:27 PM (GMT -6)   
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
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/15/2018 8:31 PM (GMT -6)   
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.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/16/2018 12:00 AM (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.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/16/2018 1:17 AM (GMT -6)   
Thank you, astroman. It's amazing how much is still unknown about how lyme and other toxins affect the body.

Would you recommend 23andme? Sounds like something I should look into.

For me balance seems to be the most challenging symptom if i had to pick just one, it waxes and wanes- but I'm wondering if I need to step up my detoxing. Also wondering how much of my balance issues are coming from POTS - just diagnosed 2 weeks ago.

Do you remember getting bit? Or when you got lyme? I will continue to send healing thoughts your way.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/16/2018 9:23 AM (GMT -6)   
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.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/16/2018 2:14 PM (GMT -6)   
Wow, astroman. Thank you! I will look into it. I also crave answers and reasons why things happen. I feel there is a link between 99% of the odd things I've had happen and I like finding the connection. I feel like you have a better chance if you know what you're up against.

Did you ever have leg weakness or feel like your legs would give out? I've been experiencing this since mid October. It's frightening....at 34 with 2 kids under 4 I just want to keep up and be the mom I've always been and want to be...

Thanks for your help. Happy you're getting things sorted. ❤

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 3/16/2018 2:57 PM (GMT -6)   
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.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 3/16/2018 3:01 PM (GMT -6)   
Wow!!! That's excellent advice. Thank you! I do have a roller. I will start doing that again.

Once you start giving up... It's hard to start again. Thanks for the motivation - and promising update on you! I appreciate it tremendously

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/11/2018 3:13 PM (GMT -6)   
*****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.

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 4/11/2018 3:18 PM (GMT -6)   
Very interesting! Thanks, BrookieGirl, for the update. Congratulations.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/11/2018 4:01 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/11/2018 6:53 PM (GMT -6)   
I definitely think so!!

I also walked a mile yesterday and today for the 1st time since July 2017. Im so grateful

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 4/11/2018 7:38 PM (GMT -6)   
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.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/11/2018 7:58 PM (GMT -6)   
I think we're onto something! I'm currently on doxy 400mg

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5090
   Posted 4/11/2018 8:02 PM (GMT -6)   
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?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 4/11/2018 8:19 PM (GMT -6)   
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.


Wow!! That's amazing. So glad you posted this update. This should encourage anyone searching for info on Gilberts.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 4/11/2018 8:23 PM (GMT -6)   
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.

HaleyBugs07
Regular Member


Date Joined Sep 2017
Total Posts : 35
   Posted 4/12/2018 11:11 AM (GMT -6)   
I was also diagnosed with Gilberts/high biliruben back in 2016 from some bloodwork I had done. I was going to try to treat my Lyme with herbals and not do antibiotics. But now I am wondering if abx might be better to try to get rid of the high biliruben.
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Saturday, August 18, 2018 11:47 AM (GMT -6)
There are a total of 2,994,090 posts in 328,103 threads.
View Active Threads


Who's Online
This forum has 161258 registered members. Please welcome our newest member, Mavis.
261 Guest(s), 10 Registered Member(s) are currently online.  Details
Tim G, scifigal2k, Artist Mark, Michael_T, Mavis, Girlie, AgentBodyLover, Jerry_Delaware, slapshot, F8