Avatar universal

I've been having very odd symptoms

I am still unclear as to what is causing it. I've been on meds (TAF/Vemlidy for past 3 years now too) that have been working fairly well. However, my recent symptoms are reminding me of the time when my chronic Hepatitis B went active because it has been almost exactly identical to what was happening and is making me question if I built a resistance to my medication or if something else is going on.

To give you my most recent symptoms, which started in about January:

-Watery diarrhea that is fixed by taking probiotic yogurt. If I do not eat this, it comes back within 2-3 days
-Blurried vision at night
-Lack of appetite. It's not bad but I used to be able to eat a lot more and now I'm eating lighter
-Erectile dysfunction... I'm not sexually active but let's just say I very much notice
-Depressed mode. I'm not able to get out of the house as much because of this, thus making me depressed.
-Tiredness. While it is not horrible, I used to stay up and out later and I am not doing so any more. I can fall asleep sometimes at 9:30pm which is very unusual for me. Then I'll be up middle of the night a few times, giving me a hard time falling asleep
-Nauseous as well, which comes and goes middle of the night and is more prominent in the mornings, thus putting me down for a few hours after I wake up
-Weight Loss, while I have been trying (and it has subsided a bit), I was never able to lose weight as quickly as I did. I wanted to test some things out by putting some weight back on for a few pounds (around 5lbs) but it has not been happening. I've been drinking Ensure to try to help regulate the weight
-Weakness of the body. It's not extreme but there are days that are worse than others
-Lack of interest in my normal activities. I've been finding this as well more recently, especially since it's been harder to get out and do things.

Has anyone felt this way before? I've been back on the 10,000iu of Vitamin D3, added a good dose of Vitamin K2, magnesium, Selenium & Fish Oil. However, it only seems to be helping a little bit and I've been spreading out when I take it. I'm not even interested in drinking coffee any more because it has made me feel worse for some reason and that never used to be a problem for me.

Has anyone had this problem before while on medication? Is it possible this is a side effect of medication or something else going on? I did recently find out I may need to have a tooth extracted due to a tooth abscess found and I am reluctant to get it fixed/extracted because it may require I go on antibiotics and I am not sure if that is safe for me with a liver condition and being on Vemlidy as well. I also have a very damaged neck that may require surgery too, so I'm trying to figure out if anything I am experiencing is related to my other issues or if it is related to Hepatitis B. I do know that everything I am experiencing now, is what I was experiencing prior to being on medication, so I question if what I'm going through is normal or if I have built any sort of resistance.

Sorry for bringing it up here, but I wanted some opinions or to see if anyone here on treatment has gone through the same. Thanks!

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9624973 tn?1413016130
Struggling with HBV for the past 5 years now, i can definitely let you know that : Watery diarrhea,  Lack of appetite, Erectile dysfunction, Tiredness, lack of interest are all symptoms i've experienced while being constantly depressed and stressing out. So It's definitely not only from your meds or Hbv. The mental state is very important in this. Like you, i was spending lots of time inside and couldn't think of anything else but this. Of course, your blood tests will give you all the answers, but have this in mind
Helpful - 0
I wish I could say it wasn't the only thing I was thinking about. There are lots of medical issues going on outside of Hep B as well that I had mentioned, some of which make it physically hard to get out like I wanted to. On top of this, muscle twitching/spasms seem to occur. Yes, my mind is racing too and that wakes me up middle of the night. I had these same muscle spasms/twitches when things were active. Maybe it makes sense for me to get a blood test before my next test, just for piece of mind. Thanks!
Avatar universal
It can be from the drug itself. But also the virus has his effects. From what I have read on different research papers, the antiviral has a level of toxicity over the way mitochondria works (the power plant of our cells). By affecting the ATP process. All this can cause neurological symptoms  plus other symptoms: fatigue, peripheral neuropathy, central nervous symptoms and so on. You can search on internet to see what supplements are good to support mitochondrial function.

Helpful - 0
Quite interesting but then I ask this question, why has this been happening suddenly now and not the past 5-6 years. I'll research to see what I can find but so far seems to be mostly CoQ10 which I've never had to take before.
Because again the antiviral depletes the mitochondria in time. And the adaptability of your metabolism to face this toxicity can increase or decrease with time. It’s really complex for sure the entire mechanism. For sure a cure where we don’t need to take life long nucs is the proper way. Until then we need to manage the side effects. If the antiviral has an effect not allowing a virus to replicate. For sure is a affinity against the mitochondria to not allow it properly to replicate. Also please research about PQQ supplement.

A lot of people are experiencing nucs side effects. But also the virus is bad for our liver. And there is evidence that tenvofovir has anti fibrosis effect. Therefore is also doing a lot of good to our liver.

Do a lot of research on what supplements can help your mitochondria and see if they work for you.  

Also don’t forget PQQ

I will try it my self. Currently I take b12 methyl form and Quattro folate folate form. And it helps. D3 made it worse for me
Avatar universal
Also you can read more on this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566449/

It will be good if you check your B vitamins levels: like folic acid, B12 vitamin maybe other elements like zinc, selenium

But fore sure is good to check with a Doctor. Because supplements not taken correctly can promote more harm than you imagine.
Helpful - 0
Thanks for the link and for the advice.
Avatar universal
So all of this is still happening, though my sleeping is getting worse. At times, I may be able to sleep 7 hours but my sleep patterns are very different and I've been asleep much earlier than normal and awake throughout the night with the inability to get back to sleep comfortably. I do not feel rested at all, not like I was before, where I was sleeping a lot and even middle of day I'd feel tired enough to take a quick nap. I'm not getting this now. I'm concerned that I am not responding to my medication still, even though I've taken EVERY dose, so I made an appointment with the doctor to discuss... though because he is out of town, I have to wait a week now. I just wanted to follow up on this because I still don't have any idea what to do. I'd like to get a good night's rest, and maybe I am thinking about this and other health issues and work too much, but I am unable to feel like I got a good night's sleep. I hope this changes soon. The only thing I've done differently since this all started, was start to see a chiropractor for my neck and back issues. I'm hoping there is not some adverse effect here that causes me to get a resistance to meds from the work they do.
Helpful - 0
Avatar universal
So good news, I got in with a doctor earlier today and they drew some blood tests (Unfortunately not HBV Viral Load but all the other tests) to see where I'm at. No ultrasound ordered. They said that if my Liver Function Tests are elevated, then they'll do more tests for Viral Load, but if not then they will stick to the plan on the trial. What I was told:

1. This could be Hepatitis A - since there was an outbreak in our area - but likely not since I was vaccinated against it.
2. It could be a bacterial infection (they took a stool sample from me, thankfully that went easy even if it was anally). If so, it may just be a course of antibiotics to fix it
3. While doubtful, if my Liver Enzymes are elevated, then they'll check viral load as it could be a resistance to TAF.

These were really the 3 main concerns. Granted, the doctors were concerned with the extra weight loss too. But they shrugged it off as "Extra weight loss may occur with a lot of diarrhea, so it could be that." My concern of course is some form of cancer. They did do a full work up, including white blood cells, kidney functions, liver functions, electrolytes, etc. I could not choose what I wanted as they took what they called a safety measure test. The good news is, I have no phone calls back the same day with any alarming info, so hopefully nothing serious and I should know results come Monday/Tuesday the latest. In the meantime, I have opted to go against adjusting my back any more. I feel this could have triggered something (neck is a different story, I may have to continue this or it may require surgery) through all the chiropractic work since this is when it started. So I will see how that plays out in these next 2 weeks. I told them everything I had was the same experience prior to medicine, this also included muscle wasting. I was fortunate enough to get in as quick as I did, I'll keep you guys updated on any condition.
Helpful - 0
It could be stress or lifestyle.  Cut out all sugars.  Also,  check I’m your vitamins levels.  Try taking potassium and see if their is a deficiency
Avatar universal
Update here, I got my blood tests back and everything on there was within normal range EXCEPT the Creatinine and Glucose. Glucose was fairly high. Here is what they measured:

WBC - 7.9
RBC - 5.20
Hemoglobin - 15.8
MCV - 89
MCH - 30.4
MCHC - 34.1
RDW - 12.8
Platelets - 298
Neutrophils - 69%
Neutrophils (Absolute) - 5.5
Lymphs - 23%
Lymphs (Absolute) -1.8
Monocytes - 6%
Eos - 1%
Eos (Absolute) - 0.1%
Basos - 1%
Basos (Absolute) - 0.1

Glucose - 122 mg/dL
BUN - 18 mg/dL
Creatinine - 1.30 mg/dL
eGFR - 67 ml/min/1.73
BUN/Creatinine Ration - 14
Sodium - 140 mmol/L
Pottasium - 3.8 mmol/L
Chloride - 100 mmol/L
Carbon Dioxide Total - 21 mmol/L
Calcium - 10.0 mg/dL
Protein (Total) - 7.3 g/dL
Albumin - 5.0 g/dL
Globulin, Total - 2.3 g/dL
Alkaline Phosphate - 64 IU/L
AST (SGOT) - 22 IU/L
ALT (SGPT) - 34 IU/L

They did not measure HBV DNA. They said they would only do this *if* my liver enzymes shot up for some reason, but my AST did go down a bit here. I'm still waiting on results from the stool sample as well.
Helpful - 0
Cut out all sugars
Avatar universal
Update here, stool samples all came back clean as well. Nothing detected and they checked for all these viruses and infections in the stool (E.coli, c.diff, Norovirus, etc.) I'm at a loss as to what has caused this.
Helpful - 0
Good news, take care. I hope you feel better.
Avatar universal
So all these symptoms are still happening, and no answers. I'm seeing the doctor on Monday admist all the crazy Coronavirus stuff going on. However, I think I am on to something:


I need to get this monitored ASAP, because it's possible that after taking 10,000iu all these years and being outside as much as I have (even if it was winter, I may be getting Vitamin D3 from sun), that I reached a level that was too high. I am experiencing a few of these symptoms, as noted in this post, and while my Calcium Levels were normal, my Vitamin D3 levels may have reached too high. A lot of this continues on daily and I noticed it was worse during the day after I take my D3. Usually by evening, I'm feeling better, but lack of appetite, weight loss, diarrhea, elevated kidney function and yes even some bone loss in my jaw (I can feel it) along with muscle wasting in my legs. Most of these are reported on this article. I know it's easy to say "10,000iu a day won't cause this" but after years of consumption like this, it may be one of the leading cause of my symptoms. Either that or I am experiencing liver failure, but I would think that would only come with an extremely damaged liver from tests and my last tests 3 months ago did not see this. I'll keep you guys posted on here!
Helpful - 0
you wont see anything from liver problems, stop vit d and see what happens it should go down very fast.do you regularly test for vitd25oh?can you test for vit A, magnesium?
Thanks Stef! Yeah, I'm going to talk to doctor on Monday. I actually don't get tested for vitd250h regularly so I am going to ask for it on Monday. I didn't take my Vitamin D3 today at all, and started to feel better as the day went on. Not perfect but a lot better and many symptoms (like lack of appetite, tiredness, diarrhea) did not appear. Even the jaw issues and such started to get better. I'll see how it is tomorrow. Maybe I'll be able to sleep through the night without waking up almost every hour and a half. I will ask for Vitamin A and Magnesium as well. The other thought was I came down with some sort of flu. I actually don't feel down and depressed tonight, and almost every night I have been feeling this way which just makes me want to sleep. Now I feel energy... I'll let you know what happens.
hi luckyman316 maybe completely irrelevant but for sleeping problems and for feeling less depressed did you try jogging/cycling/swimming? for my depression problem endorphins after sport works. last year dr told me that my liver started being scarred (im hbeag-)  I am doing sport more often since then I just can face it mentally better way whatever will happen to me.
Yeah I was doing sports for a while but my neck injuries are now preventing me from doing much (I was given an option for surgery).  I did get measured for Vitamin D3 and HBSAG quantitive so I'll have those results back in 4-5 days
Avatar universal
My doctor did say that 10,000iu daily of D3 for many years was a lot. I totally forgot to ask him about Vitamin A and Magnesium testing. Whatever has been occurring, seems to be subsiding over time and only think I've done differently was not take Vitamin D3 for a bit of time over the course of a few days.
Helpful - 0
Avatar universal
Update here, since it's been about 2 1/2 weeks since my last one. I'm not longer feeling sick short of a slight cough since the last update (It probably started on the 16th). Appetite is back, in full force, and I have not had daily watery Watery diarrhea. No extra weight loss, though it's been slow to gain some of it back. Some of the weakness I'm experiencing may be due to my neck issues but the other I was experiencing, I can tell a difference and feel stronger again. I'm not neausous or depressed and my sleep cycles are no longer really disturbed. I feel well rested when waking up, for the most part. I'm strongly convinced that I had or have COVID-19 and my body is finishing up clearing it out. I read an article that digestive issues, which may include diarrhea, are common problems with people dealing with COVID-19. Unfortunately, doctors didn't test for this and also unfortunately, they did not diagnose me with anything else (though maybe that is fortunately as well!) I'm still waiting for results from my hbsag and Vitamin D panels.
Helpful - 0
glad to hear improvement.
Avatar universal
I got lots of test results back ... everything they tested me for, including IBS and Lupus and who knows what else, all came back negative. Besides some other things going on with me not liver related, I'm doing better. This is more and more convincing me that I had COVID-19 and maybe had it for a little longer than most healthy people.  Thanks all for the support on here. Going to start another thread with some extra info I just got too.
Helpful - 0
Avatar universal
Actually, I take that back. My Sedimentation Rate-Westergren was high at 22 and C-Reactive Proten, Quant was also high. Both have been associated with some sort of infection, inflammation or even heart issues or cancer. I had no idea they were testing for this. But I definitely am not experiencing the same issues like I did before.
Helpful - 0
you definitely had covid19, better test for antibodies later on to have it confirmed but all the symptoms are covid19 thats to say very high inflammation, heart issues, lung issues, gastro issues and even liver issues.in italy they are prescribing Hydroxychloroquine , azitromicin and eparin (lung issues are due to clots developped due to super  high inflammation).there is a geopolitical war going on so we will find results and some rigged studies finding the opposite.the most interesting study is using ozone therapy, if made early the illness is blocked, ozone is cheap, not a drug and free of any sides effects so the most interesting
Avatar universal
Good luck man
Helpful - 0
Avatar universal
I also made the mistake of listening to people on here to take 10,000-20,000 iu a day of vitamin d. 5,000iu a day is plenty. Once I lowered my vit d dose I felt a lot better. My vit d levels is around 60 something and I feel fine. It doesnt need to be in the 90-100 range. I take Orange Triad multivitamin which has 5,000 iu in it.
Helpful - 0
it depends on your deficiences of vit A and magnesium or your vdr genotype.the reson of high levels around 100ng/ml is to obetein a minimum immune response that slowly can lower hbsag over the years.we tried high dose vit d years ago, if you search there is a post, and hbsag/hbvdna inversely correlated with very high vitd, it can t clear it but it lowers it especially adding immune therapies.i tried my self a protocol which can be done only under medical supervision making vitd25oh 1000-2000ng/ml, activating trl immune receptors by imiquimod in the liver and gcmaf injections and took hbsag level down about 2000iu/ml so that when i started adding pegintf my hbsag was in the 1500iu/ml range with more chances of response to pegintf.so the levels depend on what you want to do, your vdr, your inflammatory status, if you are obese.anyone must take it and follow levels. few can t even increse levels with less than 15.000-20.000iu daily others are fine with 5000iu and the immune modulation is only between 50-100ng/ml lower levels are only for calcium metabolism, the research done on people under the sun all day with most skin exposed had levels regulated by the body in the high normal range around 80-100ng/ml, they even found 150ng/ml on a farmer.on the contrary if you have high levels by supplements more than 100ng/ml they found sun exposure lowered levels....there s a lot to understand about vit D especially what else the sun does to its activation and other forms of ormones
for general prevention 60ng/ml is just fine but if one wants to use it farmacologically to obtein effects like stopping autoimmune disease or increasing response to hbv in combo with immune modulation more than 60ng/ml is needed
Avatar universal
I just wanted to offer an update here, it's been a bit of time since I said anything (almost 2 months). I did take an COVID-19 antibody test and it came back negative for me. I'm now in the thinking that the the chiropractic work I was having done, triggered this off instead. I noticed this more when I was going through it more and a lot of stuff started for me in December but got worse Feb-March. When I spoke to a spine specialist about this, he had mentioned it totally could as the adjustments could have been pinching on my spinal chord in my neck more  (already being compressed) causing me to have bowel problems OR the adjustments could have been pressing on my insides from the back adjustments I did not need. It's either that or I had a very delayed reaction to contrast dye used in me back in October 2019 for a liver MRI.

At the moment, I have been back on probiotics for a little over a month now. This was because I had to have a tooth pulled due to a tooth infection and was asked to go on a medication called Clyndamycin. I took every precaution to avoid getting sick from this medication as well, and continue to do so since symptoms can occur almost 3 months later unless necessary precautions are taken.

That being said, almost EVERY symptom I had prior is gone. The only thing I have been unable to do is gain my weight back. Sometimes I'm up a pound or two, sometimes I'm down a pound or two, but the 10-15lbs I lost because of this has not returned. But it's ok, as I needed to lose that weight anyway and am back to a weight I should be. I'm going to test this out more the next week by reducing my intake of probiotics (currently at 2x a day) to maybe 2x a day for only 2-3 days during the week and report back here what happens.
Helpful - 0
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