Actually, I think the thread belongs in both the Pre treatment and post treatment sections. Please allow me to explain why.
Willy mentioned low Vitamin B12.
And Hep C patients are known to have low Vitamin B12 which is a treatment negative. It lowers treatment success (see first study link).
And treatment with interferon lowers Vitamin B12 even more (see second study link)
So it is a real possibility to end up with low Vitamin B12 after treatment, which can cause very serious problems including brain lesions (see third study link).
So this topic certainly pertains to post treatment. It could save someone a lot of suffering.
Serum B12 levels predict response to treatment with pegylated interferon and ribavirin in patients with chronic hepatitis C virus infection
Vitamins B depletion, lower iron status and decreased antioxidative defense in patients with chronic hepatitis C treated by pegylated interferon alfa and ribavirin.
Periventricular white matter lucencies relate to low vitamin B12 levels
Will this is really good. I learned on here, after I relapsed from the first tx and before the second one that B12 was useful for treatment as well as the neuropathy, I started B12 shots for a while slowly graduated to sublingual B12. I also learned about the Vitamin D and also diabetes or insulin resistance and how it could help me get to SVR. Without all of those people talking about it back then I might not have gotten to UND much less SVR. Perhaps we are now the people who should discuss as HR and Gauf did back then.
The probiotics have helped me quite a bit since finishing tx.
I have suggested to people with pain, cramps that they could try calcium and magnesium. It has helped me quite a bit.
And of course, water, still drinking the water to try to stay hydrated.
Thank you again :)
Hi I wanted to come back to say that I have found this book to be very helpful
Prescriptions for Nutritional Healing, A practical A-Z Reference to Drug Free remedies using Vitamins, Minerals, Herbs and Food Supplements.
Before that I used a book by Adelle Davis which was a woman ahead of her time as far as nutrition and healing.
Thanks again Will, good topic, good information
Oh I wanted to add that I have started a supplement called Serrapeptase. it is supposed to clear out old dead tissue in the body.
I started taking it due to my frozen shoulder.
I was told it is a result of collagen being laid down around my arm and shoulder. The pain is very bad so I decided to try it.
I can tell a difference. My brain fog is gone. The pain has improved.
I have read some people say that it things the blood however I just had blood work after being on this for the past 6 to 8 weeks and my platelets are in the normal range for the first time in 10 years. Serrapeptase has a very long list of ailments that it helps.
Hi guess who? :)
I have never heard of micronutrient testing. I looked it up and found this place that can help a patient get it done or even have it sent to your home to have it done.
I am really interested.
Dee, you'll notice that three of my links pertained to that outfit; spectracell.
I dunno if they are the best, but they seem to come up often in searches.
One of the links....this one said the price of a test was only about 400 dollars.
I like the idea because you can pinpoint what you need and not buy a bunch of stuff you may not. I think the test has 33 micronutrients
I also feel like we should have an idea of where out iron and ferritin is post TX. Many people are high to start with, higher yet after TX and high iron can be hard on the liver and joints....actually many organs.
Darn, so sorry, I was looking up "micronutirent testing", did not even double check your sites before posting.
Well....all I can say is I have done it before, will probably do it again. :)
I like the idea as well, I found the list of all the tests done and it looks very comprehensive.
This company will even help you get the testing through your doctor though I would imagine that going to a lab with the order would be good
I am very interested in this...in case you can't tell LOL
I liked this guys other utube video so well I had to also post this since it is also in the micro-nutrient testing.
Vitamin B-12 Deficiency
The same guy talking about Magnesium Deficiency
Thanks Willy, very interesting.
Thank you Riv, I also had a high interest for a few reasons.....
1) for years I have read that alcoholics have a similar deficiency
2) I have read that it may pertain to neuropathy (and I have a mild case of it)
3) I have a HCV+ friend who has acid reflux; terrible and one of those addressed that issue.
I even missed the point about pernicious anemia at the 2:40 mark in the Vitamin B-12 Deficiency Utube,
So when I googled B-12 deficiency, and saw this link, at that time I saw the reference to pernicious anemia......
That resonated with me a little...... because when I mentioned to my sister I was anemic during TX.... she said you know your grandmothers mother died of that, (pernicious anemia) so I may have a higher anemia risk. This could have played a part in my neuropathy; why it may have been an issue for me, and few others.
Speculation of course, and it could just be one of many factors..
It was interesting to me the line of thought that cancer treatments can lower b-12 levels which might cause depression and so an anti-depressant might be prescribed which lowers folic acid which like B-12 deficiencies can cause depression. It seemed very much like alcoholics who drink to relieve depression, which lowers the B-12, which causes depression, and so they may continue to self medicate.
It is equally chilling to me since I told an old HCV+ friend I was starting into a trial, I remember when they went on TX and started the AD's..... and 10 years later, they are still on them. I liked the idea of treating the cause, instead of the symptom.
I like the idea of just knowing whether certain micro-nutrient levels are being met via a relatively cheap test.
If the levels are fine, I can forget about them. If they are low, it means more research, but perhaps an easy direct solution via medical care, diet or the addition of supplements.
I am thinking that I want one of these tests.......
Here is a wiki page, which I also found interesting. If we are low, it may also be due to our inability to absorb, so a shot at the doctors might also be worth considering, but there are also sublingual forms.
Really good information.
When I had neuropathy I found similar information and started with B12 injections. After 8 months or so I started with the sublingual. I read the same thing you did about not being able to absorb the B12 so either injections or sublingual were best
I have been trying to get my Dad to take the B12 for about 4 years now, I think it would help with his dementia and leg pain.
Thank you again for posting this. I am sharing this information with my Aunt, she is suffering with an inner ear problem after taking clindamycin.
It was interesting to me the line of thought that cancer treatments can lower b-12 levels which might cause depression and so an anti-depressant might be prescribed which lowers folic acid which like B-12 deficiencies can cause depression. --------------------------------------------------------------------------------
This is important information. This forum is turning out to be real gold.
I agree, this is really important for people to try to find out what could be happening after they finish treating
I am trying to think outside the box.
Much like Pooh found out that she had problems and needed to plaquenil. It is helping her very much.
I placed this thread in the post treatment forum.
Somehow...... inexplicably, it is now in the social forum.(unless I am delusional)
I placed it in the post TX forum since many people post TX have issues which could have been exacerbated by the form of chemotherapy we go through. If we are to repair ourselves, we may need to treat all deficiencies.
These are not theoretical; they have been established by science. This thread is about getting tested to get ourselves back to recommended guidelines.
As I mentioned...... since these same issues can also affect our chances of success with TX I also believe that some of us face deficiencies due to the type of "modern" processed foods we eat, or fighting a chronic infection.
There have been studies which show that some vitamin deficiencies may also negatively affect out chances with TX, I have seen studies which show adding vitamin a A, B, and D may also improve viral response.
So.... I can understand this thread might also be of some use to people preparing to treat. I can understand that it may be of use in the post TX forum. If you want..... I'll write a separate thread for EACH forum. : )
What I don't understand is why (it seems) to have been moved out of the originating forum where it was placed, and I rather doubt that it was done without prompting. What is the issue if any? And why was it moved to the "social" forum?
Or an I just dreaming? That's a possibility after all. I *thought* I put it in the Post TX forum and my originating sentence even says so.
Maybe instead of being delusional, I'm clairvoyant. : )
IF I'm in error could this please be moved to the post TX forum.
In many forums when threads are moved they have a note attached as to where they were moved from and why.
It would be nice if there was some guidance on this issue since I believe it has happened with other threads.
I agree this is very good information
I am going to do this
Hi there -
This was moved from Post-Tx Issues as it was off-topic, which you stated in the first paragraph.
Hi CoWriter -
Thanks for the thoughtful and respectful post.
Our post-tx forum is for those with lingering issues (either due to the tx itself or the virus) after 6 months of tx. Is this something that 6 months out could still be the result of either?
I agree with cowriter.
This thread could not be more relevant to post tx issues.
I was not aware until post tx how much my body was depleted and that was due to info. provided by Dee,Willy and a few others.
Here is the information written/posted describing the purpose of the Hepatitis C: Post Treatment Health Issues Forum: "This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints."
That is supposed to be what the forum is for.... those people who have Hepatitis C related (extrahepatic manifestations of Hep C or liver related health problems such as Cirrhsosis) OR Hepatitis C treatment related health problems so we can discuss our specific health problems and obtain concrete information concerning our specific health issues/problems. In my opinion, the forum was never intended to be a forum for people to just post about their favorite topic or to post about anything and everything pertaining to global health issues (all encompassing health issues). We could all start posting about anything and everything, but that defeats the purpose of having our own specific post treatment health issues forum in which to discuss our own post treatment health issues.
I do not think a Vitamin thread belongs in the Hepatitis C: Post Treatment Health Issues Forum. It is one thing to post a response to a question and include specific vitamin deficiency information if one feels the specific problem/health issue (raised in the question) may be due to vitamin deficiency. However, it is an entirely different thing to just post a long dissertation about ones own ideas and views concerning vitamin deficiencies. The latter type of general vitamin deficiency post does not belong in the Post Treatment Health Issues Forum.
I at first thought this new forum was a great ideal for those few that have had long term issues. But it seems a few want to just make it anything and everything......... Maybe I am reading the reason for this forum wrong, like long term side effects for people that have had post treatment issues...
The other day I met a man who had treated and ended up with low Vitamin B12 and brain lesions. Yes, after the six months.
Hi everyone -
First, let's all calm down. This is ONE thread. This is not personal, this is not the result of one person and her agenda (and I don't know who you are referring to, rivll, and don't need to know), nor should it kill any forums or dampen any enthusiasm.
If someone (CoWriter, for example) has some info that this can linger 6 months post treatment due to treatment, please feel free to post it in the post-tx forum.
If any you have concerns about another member, or the forums, please send me a PM. I know you all know how to do that. ;)
I personally was dxd with low B12 levels several years after tx.
The post-tx situation is more complex than a few overt symptoms. It involves changes to the metabolism caused by both the Interferon (and other drugs,, changes made to the body's cells by the virus, occult virus left behind after SVR, and myriad other problems caused by a mix of age and the previous mentioned problems. To pick and choose what is posted there and who gets to post is silliness.