Jump to content
ACN Latitudes Forums

Recommended Posts

I think my brain is shutting down! I thought I was doing so well to make a chart of all the new meds and supplements, get my gluten free cookbooks back out, and notify the school of some of the changes. Ryan's liver is not releasing any bile to digest his foods. He is not getting any of the benefit of the fats. We are supplementing his diet with OxBile to make up for his natural bile. Also, his liver enzymes are elevated.

 

My mother died from Hepatitis C seven years ago, so I know what end stage liver failure looks like. It is a horrible death. My mother and I were very close, I was the last of seven children, the baby. I freaked out yesterday because I thought of losing my son in the same way. I know we are a long way from death and I am probably over dramatizing, but I am just beside myself.

 

Ryan was tested for Hep C and tested negative. Thank the Lord. But he tested positive for so many other things that are hard on the liver like Epstein Barr virus, HHV1 and HHV4.

 

I guess I just needed to vent and ask for reassurance. Did anyone else have liver problems with their Lyme? Did it go away?

 

Thanks,

 

Cobbie

Link to post
Share on other sites

Hi, we have not had this issue with the liver but I wanted to give you some cyber HUGS because it is overwhelming with all the medicine and schedules and herxing and symptoms and then you have these extra experiences and feelings that make it all the more stressful and worrisome. I wish you the best, I know you will work through it all and come out the other side. My mom always says slow but sure wins the race and I think that is becoming my manra now.

 

Susan

Link to post
Share on other sites

Thoughts and prayers are with you. It's tiring being the strong moms through this. I often worry about the effect on my kids' livers, especially since my mother-in-law died of liver failuer (yes, alcohol involved) and her mother died of liver cancer. Still makes me worry. The kids drink lemon water which I hear helps detox the liver. Maybe you can voice your concerns to your doctors. If you get any info, please share!

Link to post
Share on other sites

I think my brain is shutting down! I thought I was doing so well to make a chart of all the new meds and supplements, get my gluten free cookbooks back out, and notify the school of some of the changes. Ryan's liver is not releasing any bile to digest his foods. He is not getting any of the benefit of the fats. We are supplementing his diet with OxBile to make up for his natural bile. Also, his liver enzymes are elevated.

 

My mother died from Hepatitis C seven years ago, so I know what end stage liver failure looks like. It is a horrible death. My mother and I were very close, I was the last of seven children, the baby. I freaked out yesterday because I thought of losing my son in the same way. I know we are a long way from death and I am probably over dramatizing, but I am just beside myself.

 

Ryan was tested for Hep C and tested negative. Thank the Lord. But he tested positive for so many other things that are hard on the liver like Epstein Barr virus, HHV1 and HHV4.

 

I guess I just needed to vent and ask for reassurance. Did anyone else have liver problems with their Lyme? Did it go away?

 

Thanks,

 

Cobbie

 

All i have are cyber hugs()...I can relate as both of my parents are gone and sure would like just talk with them for just 5 minutes...And having a sick child trumps it all...

You can vent any time.

Link to post
Share on other sites

Vent away..... Keep looking for those markers of improvement that give you hope and confidence that this is working.

 

Remember that for most children with chronic Lyme its a two year road to recovery. Slow and steady wins the race. I try to get everything in each day but if something gets missed there is always tomorrow.

 

The liver enzymes will resolve with treatment. This is all fixable and you are fortunate to have discovered this for your son!!!!!!!!!!!!!!!!

 

-Wendy

Edited by SF Mom
Link to post
Share on other sites

I think my brain is shutting down! I thought I was doing so well to make a chart of all the new meds and supplements, get my gluten free cookbooks back out, and notify the school of some of the changes. Ryan's liver is not releasing any bile to digest his foods. He is not getting any of the benefit of the fats. We are supplementing his diet with OxBile to make up for his natural bile. Also, his liver enzymes are elevated.

 

My mother died from Hepatitis C seven years ago, so I know what end stage liver failure looks like. It is a horrible death. My mother and I were very close, I was the last of seven children, the baby. I freaked out yesterday because I thought of losing my son in the same way. I know we are a long way from death and I am probably over dramatizing, but I am just beside myself.

 

Ryan was tested for Hep C and tested negative. Thank the Lord. But he tested positive for so many other things that are hard on the liver like Epstein Barr virus, HHV1 and HHV4.

 

I guess I just needed to vent and ask for reassurance. Did anyone else have liver problems with their Lyme? Did it go away?

 

Thanks,

 

Cobbie

 

cobbie,

how did you find that your boy is not releasing bile? did you have any blood tests recently? does it show any problems with liver or you are just worrying?

 

could I ask what meds he is on presently? could you list?

Link to post
Share on other sites

Cobbie:

 

I just wanted you to know that my thoughts are with you right now. My mother also has Hepatitis C. My son has had similar issues and constant high bilirubin levels. Did you figure out the bile issues by your son's gut issues?

 

Our LLMD thinks that getting rid of all of the infections and boosting the immune system will hopefully correct the high bilirubin.

 

Again, I can understand how overwhelming this all is for you and I think that it is helpful to vent!

 

Elizabeth

Link to post
Share on other sites

how did you find that your boy is not releasing bile? did you have any blood tests recently? does it show any problems with liver or you are just worrying?

 

could I ask what meds he is on presently? could you list?

 

Thanks for all your good advice. This calms me down somewhat and brings me back from the edge...

 

We recently ran 37 vials of blood, stool tests and urinalysis. He had the CDSA 2.0 from Genova Diagnostics.

 

Here is the list of medications: Bicillin LA (once a week), Zithromax 500 mg, Doxycycline 200 mg 2xday, Zenpep (RX digestive enzyme), and Heparin (blood clotting disorder), and Gabapentin.

 

Here is the list of supplements: Mastica (for H. Pylori), Monolaurin (anti viral), Transfer Factor Plasmyc (HHV 6/Epstein Barr), Oxbile (replaces natural bile), Iodoral (Iodine supplement), Zyrtec, Zinc, Caltrate, MG Plus, Choline (liver detox), B50 and Vit C.

 

Most of these must be timed specifically around mealtimes, each other, and bedtime. I feel like a pharmacist.

 

Thanks,

 

Teresa

Link to post
Share on other sites

our LLMD did the Detoxigenomic profile from Genova Diagnostics for DS. It does genetic testing for any genetic susceptibility (polymorphisms) for familial illness like cirrhosis of liver, cancers etc. It gives info on both your and your DH's gene pool and tells if all the detox pathways are clear or not. DS has two pathways absent (YIKES!!) and a few more only from one parent meaning seen in only one chromosome. The report is very detailed, good explanation for parents and excellent suggestions for natural improvement.

For liver detox the suggestions are

Milk Thistle non alcoholic extract, green leafy veggies, all colorful fruits, cruciferous veggies like brocolli, brussells sprouts, cauliflower, watercress etc., herbs and spices like turmeric/curcumin, poppy seeds, garlic, onions, black pepper, rosemary, basil.

Bottomline I felt it said that vegetarians have the lowest risk of any liver detox issues or colon/uterine/cervical/breast cancer risk.

Our LLMD appt is in a few weeks and I will let you know if she adds any supplements like Chollne etc based on these results.

Jodie

Edited by sptcmom
Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...