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After 31 years of CFS/ME...diagnosed with NAFLD

Violeta

Senior Member
Messages
2,895
I was searching for NAFLD Cases and bumped in your thread.

Please have a look at this thread, i believe you will find it useful :


http://forums.phoenixrising.me/inde...ponse-and-a-possible-treatment-for-cfs.37244/

Thank you, @Zensational for your post. Keep us posted on how it goes for you.

What brand of vitamin e do you take?

Did your doctor give you that list of supplements, or did you work it out for yourself?

Health of the liver is so important.

The thread about endoplasmic reticulum stress and protein folding by @mariovitali does add important dimension to the issue that's not usually talked about, especially if you have a virus involved. Viruses are proteins and cause endoplasmic reticulum stress that is difficult to reverse.
 

whodathunkit

Senior Member
Messages
1,160
@Zensational, how are you doing now?

Just curious, do you have any scarring/cirrhosis, or just NAFLD? From what I understand the prognosis for this can be very good with the right measures.

Also, just throwing it out there as food for thought...there also seems to be a link between omega-6 fats and NAFLD. Particularly omega-6 + sugar. So maybe watch out for foods and supps with omega-6 oils.

Good luck, please let us know how you progress!
 

Zensational

Senior Member
Messages
139
Location
Orlando, Florida
@Zensational, how are you doing now?

Just curious, do you have any scarring/cirrhosis, or just NAFLD? From what I understand the prognosis for this can be very good with the right measures.

Also, just throwing it out there as food for thought...there also seems to be a link between omega-6 fats and NAFLD. Particularly omega-6 + sugar. So maybe watch out for foods and supps with omega-6 oils.

Good luck, please let us know how you progress!


Well my PCP sent me to a liver specialist and I took my list of supplements. My report said that the NAFLD was severe and I guess I expected him to do some sort of testing but he offered nothing, saying that I was already doing everything I needed to do. Probably more because all he knew about was the Milk Thistle, because doctors get very little training in nutrition. I have since started taking an Ayeurvedic herb, Katuki, that is a rare Himalayan herb that has been off market because it is endangered but is now back on the market because they are farming it.
http://www.alwaysayurveda.net/2014/11/ayurvedictreatment-for-liver-failure.html
It is very bitter though so I am making it in gelatin capsules.
Also juicing at least once a day.
 
Messages
1
Hi Everyone, :)
I was just diagnosed with severe Non-Alcoholic Fatty Liver Disease last month. My doctor found it as a result of an abdominal ultrasound. I was shocked to learn that I am 14 times more likely to have a heart attack with this disease. She said that my cholesterol was high (237) but normally the cholesterol level with NAFLD is much higher with the disease as severe as mine. She referred me to a liver specialist and my appointment is next week. I am wondering what to expect. I believe the cause of my disease to be a 30 year bout with CFS which is Epstein Barr Virus. The virus can attack the liver functioning and apparently that is what has happened.
There is a lot we can do nutritionally to help ourselves as well as exercise and weight loss. The weight loss is slow going with me because of the fatigue but I've lost several pounds in 2 weeks. The liver is responsible for metabolism so when it is not functioning well it seems that everything slows down.
In the meantime, I am taking a very proactive approach. Here is what I am doing.
Paleo Diet- off all sugar, grains, high carbs
Lots of purified water and lemon first thing in AM and throughout the day.
Vitamin E 800mg daily
Phosphydtyal Choline 900mg
daily (there is a strong correlation to fatty liver and choline deficiency) I am using Life Extension Hepatopro 900 Mg Capsules
N-Acetyl Cysteine 1000mg
Milk Thistle 4:1 Extract 1000 mg (Silymarin)
6 CAPS – OLIVE LEAF POWDER (for virus)
4 CAPS – MUSHROOM COMPLEX
2 CAPS – CORDYCEPS
1 CAP – SELENIUM
5 DROPS LOMATIUM W. 2 GRAMS VIT C..this herb is very powerful antiviral, antibacterial and am taking to combat the EBV
DIGESTIVE BITTER WITH MEALS help decongest the liver.
PEPPERMINT OIL WITH MEALS helps with digestion and IBS
Lacto-fermented Vegetables
EVENING
CITRACEL WITH 1 TBS POTATO STARCH
AND- please read about resistant starch before you dismiss it. It is crucial in feeding the good gut bacteria. I am using Bob's Red Mill Unmodified Potato Starch. It has to be the raw potato starch. Also plantain starch will work as well.[/I]
1-2 TBLS APPLE CIDER VINEGAR
1 CAP - PRIMAL FORCE PROBIOTIC
Alot of people have had success with the Y-Dan exercises.
My husband has an embedded kidney stone so we are starting to drink chanca piedra tea for kidney stones as it helps clear both the kidneys and the liver.
If you are eating the SAD, standard American diet and drinking anything with high fructose corn syrup, like we all have, then please get informed about the hazards of this.
This is a somewhat silent disease and the food industry is not on our side. Personal opinion there.
I sincerely hope this helps someone. If you have anything else you have found that is helping please let me know. I am 69 years old and do not take any medications. My doctors are surprised but I deal health issues naturopatically.
Being diagnosed was actually a good wake-up call for me because I intuitively knew that I had GI problems, just didn't know what they were.
Thanks for your info!
I have CFS (23 years) and recently diagnosed with NAFLD that I believe was caused by it
Have just been told to lose weight.
Started on Milk Thistle mainly, and eating healthier with little result, but starting to get much more serious on the diet front.
How is your Liver now 2 years on?

Oh, you might find this interesting for it's suggestions, including it's latter mention of CFS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4848903/
thx
 

overtheedge

Senior Member
Messages
258
@Zensational, how are you doing now?

Just curious, do you have any scarring/cirrhosis, or just NAFLD? From what I understand the prognosis for this can be very good with the right measures.

Also, just throwing it out there as food for thought...there also seems to be a link between omega-6 fats and NAFLD. Particularly omega-6 + sugar. So maybe watch out for foods and supps with omega-6 oils.

Good luck, please let us know how you progress!
brings up an interesting point, have you tried Omega 3 Zensational?
If you do have omega 6 problems your omega 3 might well be low.
might want to have it checked through some lab or other
When I first went to see my functional medicine doctor I was just taking omega 3,6,9 but she recommended that I start taking omega 3 as well, I think it was based on a test result but I can't find that test.
Getting Omega levels in line seems to be one of the main things doctors who deal with CFS advise.
Now I'm not sure but I think you may want to make sure, at least if you start taking omega 3, that your omega 6 levels don't go too far down after you have been supplementing a while. I think there is a proper balance but I'm not certain.
When I first started taking omega 3, 6, 9 supplements I felt real good for a week before the good feeling faded but I figure it is still probably doing good in my system, probably going to get them tested myself after having thought about it

now, i'm no expert on methylation so I'm hoping others with more experience will chime in but I know a high homocysteine can cause heart related problems, I don't know if that could cause elevated cholesterol.
I had a test done for the gene mutations c677t and a1298c and came up heterozygous for a c677t mutation with no mutations on a1298c. these cause problems with folate metabolism.

When checked my blood levels of homocysteine were high which is consistent with c677t mutations. high homocysteine is a risk factor for heart disease so even if through searching the web you find homocysteine is unrelated to cholesterol levels it would be good to make sure homocysteine isn't high as it would probably increase your chances of heart disease even further.

My doc put me on several methylation supplements to treat high homocysteine including: active folate, TMG, R5P, P5P, SAMe, B12 and several months after beginning those supplements my homocysteine was significantly reduced. It probably took a good half year or more before it was really in a good place and now I'm wondering if I should cut back so homocysteine doesn't get too low, not sure if it being low is a bad thing or not.
Good number of people improve on methylation supplements but I have read of some getting worse on them so if you go that route go slow.

here is some info on methylation by the late Rich who researched such things
http://phoenixrising.me/treating-cf...gue-syndrome-cfs-by-rich-van-konynenburg-ph-d

though I would do a lot more reading than that if you become serious about it, if you find a gene mutation or high homocysteine or something you might want to call around and find a functional medicine doctor or CFS specialist or other sort of doc who would know about methylation and how to handle it, those doctors may be costly though, maybe not so much if you're just hoping to get aid with methylation. The homocysteine and gene mutations can probably be had through your GP if they are cool since those can be tested through the typical labs doctors use, my c677t and a1298c were tested through labcorp and the homocysteine through quest though they may cost a bit if you don't have insurance


You mention having IBS, I've had it twice and have gotten over it twice through supplements. This is the post I did on it for the details if you're interested
http://forums.phoenixrising.me/inde...ain-just-no-movement.42634/page-3#post-867103


I know artichoke and ox bile are recommended for increasing bile flow, might help

Have you noticed any of the supplements you're taking making you feel better?