Muscle/Joint Problems After DAA Treatment

[Luna7]

After my success through diet to stop my heart abnormalities I'm psyched to do this with joint/muscle issues.
I have a feeling this will be a tough nut to crack though.

Been reading about the mitochondrial damage DAA's most likely cause, so my thinking is...what nutrients help mitochondrial function?
So far, N-acetylcysteine (NAC) seems promising.
Looking into diet, and many reports say the ketogenic diet and calorie restriction repair mitochondria.
Lots of interesting speculating going on out there, some backed by what appears to be valid medical research.

Unfortunately, at this point my joint/muscle issues seem to be getting worse -- simply pressing on something (trying to get a water bottle cap off) caused pain in a muscle, remaining even after the pressure.
Ongoing knee pain severe enough to keep me from bending my knee if I can avoid it.

[Karin]

I'm thinking that diet and exercise is VERY important during treatment. It all works together the body needs extra care and not just resting it. It will ache and stiffen up if it is not properly used daily. If we do not give it the nourishment it needs to fight off the toxins ect. it will rebel. If you are tired move,if you ache stretch if u are hungry eat healthy. Not saying this is always easy but right now we are in a fight for our lives. Wouldn't it be too bad if we did not do everything possible to feel and get well ? xoxo

[Luna7]

I'm thinking that diet and exercise is VERY important during treatment. It all works together the body needs extra care and not just resting it. It will ache and stiffen up if it is not properly used daily. If we do not give it the nourishment it needs to fight off the toxins ect. it will rebel. If you are tired move,if you ache stretch if u are hungry eat healthy. Not saying this is always easy but right now we are in a fight for our lives. Wouldn't it be too bad if we did not do everything possible to feel and get well ? xoxo

So true, and I've been reading that it doesn't take all that much to reap the many benefits from exercise.
I tend to think I have to do a whole lot at times and that makes me back away some days.

[Jazz]

Been reading about the mitochondrial damage DAA's most likely cause, so my thinking is...what nutrients help mitochondrial function?

Hello Luna, can you please post a link to DAAs and damage to mitochondria? And also to an antidote to this. I too have joint pain, mainly in my wrists and fingers, which I developed pre treatment, however it seems at times worse post treatment, and I'm wondering if there is a connection.

Thanks for your contribution - I've been following your posts and suggestions with interest and appreciate them

Best wishes,
Jazz

[Luna7]

Hi Jazz, thanks, but I'm afraid I have just enough medical knowledge to be dangerous ;0  I am trying to understand as much as possible though, and research a little each day.

It appears that many drugs damage mitochondria indirectly, but DAA's (direct acting antivirals) are designed specifically to damage mitochondria, or rather to damage the genetic processes that allow the virus to flourish. It appears to be difficult, or maybe impossible, to target only the virus however, but they're getting better at minimizing damage to healthy mitochondria (it appears they have as since 2012 when the following article was written we have better antivirals in terms of side effects).
The natural respiration of the cells creates damage too - oxidation.
I like this particular study, as they are proposing solutions to minimize damage:
  https://kuscholarworks.ku.edu/bitstream/handle/1808/13163/Arnold.pdf;sequence=1
Also, in this study they hypothesize that those who have more severe adverse effects to anitvirals might have an underlying undiagnosed mitochondrial disease.

Here's a lighter article by a science writer referencing a number of scientists:
https://experiencelife.com/article/the-care-and-feeding-of-your-mitochondria/

So I've been researching what boosts the function of our mitochondria.
There's a wealth of information out there on mitochondrial damage & repair, and I didn't copy all the links. Mitochondrial damage is caused just by living & breathing too (oxidative stress), so finding out what might help can improve health irregardless of whether the DAA's contributed to the damage.
Some doctors and medical researchers, like Dr. Terry Wahls, give a great synopsis.
She reversed her Multiple Sclerosis via focusing on micro-nutrients in the diet:
  https://www.youtube.com/watch?v=lJT4gRUlpkc

I take:
  NAC (N-Acetyl Cysteine) -- a powerful precursor of glutathione, great antioxidant
  R-Alpha Lipoic Acid
  Acetyle L-Carnatine
  CoQ-10
  Chondroitin & Glucosamine
  Vitamin C, a B-complex vitamin, a multi-vitamin & mineral compilation, Vitamin D, Essential Fatty Acids, pro-biotics
Bone broth - good for joints, muscles, extra minerals
Apple Cider Vinegar

I'm also increasing low-carb veggies in my diet via salads and juicing.
I'm having trouble staying on the ketogenic diet, but hoping to get that down soon. There's a lot of evidence pointing to the repair of mitochondria via getting our energy from the keytones that are produced on a ketogenic diet vs. getting our energy via the glucose on a typical diet. There's also a lot of evidence that people live longer on a ketogenic diet and/or calorie restriction.

Dr. Wahls doesn't think the balance of protein/carbs/fats is as important as getting enough micro-nutrients, but I'm trying to see if i can incorporate both a low-carb diet and a big increase in micro-nutrients via low-carb salads and juices.

Increasingly many cancers are being viewed as a type of metabolic disease as well (due to the initial damage being done to our mitochondria, and gene mutations eventually following from that). Yet another reason to keep those mitochondria in good shape!

Let me know if you find anything that helps with your pains. BTW, I am feeling my knee pain lessen considerably, so I'm really having faith now that some of these side effects will get better over time.

[KimInTheForest]

Thanks for posting that info Luna. So useful that I copied it for my files.

kim

[koifish54]

This is a very interesting diet makes sense thanks for sharing

[Jazz]

I thank you for sharing too Luna. I too have enough knowledge to be dangerous - to my mental health! However, knowledge is also power!

My joint pain is odd, in the fact that it flared up earlier this week, co-inciding with my return home from sth east asia, and now has settled down. It leads me to think I've some sort of rheumatism limited to the joints in my hands, even though I test negative to auto-immune blood tests. I also had very hot hands during the flare and that's inflammation for sure. The wrist that hurts the most, is the one I broke when i was young, so thats arthritis I suppose. After treatment when I had hand joint pain, I had an X-ray of my hands and it imaged early stage arthritis, and my doctor didn't think it remarkable given that I'm 60 y.o.

I have been following a gluten free diet for some years now, and paleo of sorts, high fat low carb, however i haven't ditched the dairy or eggs. I knew that dairy is controversial, but I didn't know eggs were a potential irritant? For a whole lot of reasons, not least temptation (!), its so hard to maintain a strict diet long term! But I try! 

Your vitamin regime is more extensive than mine, though I do take NAC, Bs, mag, D and bone broth, as well as food probiotics. I will add alpha Lipoic and the other ones you mention and see how it goes.

The links are brilliant! Thanks again:)

[Luna7]

Kim & Jazz....so glad I could be of help!
Researching is fun, though I did realize I needed to go back to junior high 'cells 101'...

I've learned that many of those supplements and foods, particularly the N-Acetyl Cysteine, R-Alpha Lipoic Acid, and Acetyl Carnitine (along with the bone broth and veggie drinks) are the precursors of glutathione, the master antioxidant of our mitochondria.
I found this dated article informing how HCV depletes glutathione:
    http://www.sciencedirect.com/science/article/pii/092843469390043F

I imagine we have quite a lot of repairing to do after the damage of both the HCV and the drugs used to treat it.

I like this compilation from the Mayo clinic on studies relating to the benefit of CoQ-10:
   http://www.mayoclinic.org/drugs-supplements/coenzyme-q10/evidence/HRB-20059019

Jazz sounds like a nice trip, and I always wanted to visit various spots in Asia, particularly India, though many areas further east are interesting too. I lived in a yoga ashram years ago in the U.S., and lots of yogis and students from India visited, and many in the ashram made trips to India.

I have wondered why eggs are discouraged by Dr. Wahls, as well as dairy, and will have to research that more. So these can be an irritant for those with arthritis, along with the gluten?  Yeah this will be hard to give up for me too -- so easy to make meals and snacks from eggs and yogurt.
She discourages legumes too, so am wondering if I should use this pea protein. I did order some high-quality whey for my super shakes too, as it is a great precursor food for glutathione, however Dr. Wahls said she prefers bone broth.

Anyway, I do think all this is helping my muscle/joint symptoms -- I descended the few steps on my porch this morning very slowly, expecting some knee pain but there was none! Even with arthritis (whether osteo or rheumatoid) our bones can repair...been reading more about this and how people tend to think the osteoarthritis is permanent but it does not have to be.

[Lynn K]

Been reading about the mitochondrial damage DAA's most likely cause,

Hi Luna

I would be very interested to read about mitochondrial damage from DAA's you mentioned but was not able to find any information.

I did find that long standing chronic conditions (Hep C among them) as well as some medicines particularly psychotropic drugs, as well as statins and even acetaminophen (Tylenol) could have this effect.

US National Library of Medicine National Institutes of Health
Medication-induced mitochondrial damage and disease.

http://www.ncbi.nlm.nih.gov/pubmed/18626887

But I was not able to find anything specifically related to DAA's.

I am hoping you could find where your read that before and post the link so i could read more on the subject.

Thanks appreciate it

[Luna7]

Hi Luna

I would be very interested to read about mitochondrial damage from DAA's you mentioned but was not able to find any information.

I did find that long standing chronic conditions (Hep C among them) as well as some medicines particularly psychotropic drugs, as well as statins and even acetaminophen (Tylenol) could have this effect.

US National Library of Medicine National Institutes of Health
Medication-induced mitochondrial damage and disease.

http://www.ncbi.nlm.nih.gov/pubmed/18626887

But I was not able to find anything specifically related to DAA's.

I am hoping you could find where your read that before and post the link so i could read more on the subject.

Thanks appreciate it

I posted a link earlier on this thread that addresses some of these issues:
 https://kuscholarworks.ku.edu/bitstream/handle/1808/13163/Arnold.pdf;sequence=1

[Lynn K]

OK I see you had posted a couple of links missed that oops

Anyway chewing through the first link from the 2012 study of antiviral ribonucleosides.. As near as I can scratch out Ribavirin is an example of a medicine in that category which certainly explains alot about the side effect profile for Riba.

However, Sovaldi aka sofosbuvir is in the category nucleotide polymerase inhibitors (NPI's) which again as best as I can head scratch out is not the same type of drug.

I gathered from the article they are looking to find medicines with the same performance relative to the eradication of hep c but with better what they call "off target" results which I assume are what we call side effects.

I did get that too that they felt those with an underlying undiagnosed mitochondrial disease might be more susceptible to problems which would seem to make sense to me.

Great bunch if links you  have there thank so much for finding them except now I have some serious homework to do lol

Best to you

Good to know they are studying these types of issues I am sure they are continuing to do so.

[KimInTheForest]

Hi Lynn. This 2009 article predates Sovaldi & Harvoni:

http://www.hepatitiscentral.com/news/hepatitis_c_fat/

But it does make the case that nucleoside analog polymerase inhibitors also cause mitochondrial toxicity,and that when ribavirin is combined with one of those drugs, the mitochondrial damage is worse:

"While severe mitochondrial toxicity is uncommon among those only taking ribavirin, simultaneously taking two or more drugs that can potentially injure the mitochondria poses a much greater risk.  People co-infected with HIV/HCV who take ribavirin in combination with anti-retroviral drugs have exhibited more damage to this valuable cell organelle. Some other drugs in use or in development for Hepatitis C that are also nucleoside analogs include:

    * Taribavirin (Viramidine) – this drug is a pro-drug of ribavirin, which is converted to ribavirin.
    * Polymerase Inhibitors – while not all polymerase inhibitors are nucleoside analogs, valopicitabine (NM283), R-1626 and MK-0608 are."

So I think those of us who did a DAA nucleotide polymerase inhibitor plus ribavirin got the double whammy on our mitochondria.

The article suggests a lipid replacement therapy of various phospholipids to help repair the damage. I am taking lecithin daily as a source of phosphatidyl-choline, -inositol, and -serine.

kim

[Gaj]

So I think those of us who did a DAA nucleotide polymerase inhibitor plus ribavirin got the double whammy on our mitochondria.

Hi Kim,

This subject of mitochondrial toxicity has been brought up in a few places lately and as you say the cautions around toxicity do apply to a number of drugs in this class that have been created and trialled, in many cases having resulted in their discontinuance or use only in cases of extreme necessity. However, we need to be careful that we don't start lumping all drugs in a particular class into the same category and assume that all of them are problematic in a process of 'guilt by association' but rather look at each based on its own risks and merits.

In the case of Sovaldi/Sofosbuvir, unlike the others you list, we have a drug that is considered very mild and low risk in the context of mitosis, please see the following quote and associated link.

Sofosbuvir was found in vitro to have a low affinity for host cellular and mitochondrial deoxyribonucleic acid (DNA) and RNA polymerases, contributing to a low overall toxicity profile and differentiating sofosbuvir from other nucleos(t)ide analogue antivirals

Page 10 of http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4542085/

Like any drug Sofosbuvir will often have some adverse effects which will vary from person to person and in relation to what other drugs it is combined with but in this case we need to remember it has been proven to be a well targeted, safe and extremely effective drug that has minimal impact on the health of patients in comparison to the disease it is being used to treat.

[Gaj]

None of what I say above takes away from most of us having accommodated this virus for several decades or more (while often feeling the need to hide it from others).
So with the resulting sudden changes to our metabolism and minds that the DAAs bring on it is not entirely unexpected that there are some additional impacts both during and post treatment whether from the drugs themselves or from the symptoms of the virus no longer overwhelming or masking underlying problems that we carried around unheeded in the past.
While no doubt many patients are able to move quickly back to a 'normal' life I suspect that for some of us the road to recovery stretches well past the last pill of treatment both on a physical and emotional level.

[Luna7]

......

So I think those of us who did a DAA nucleotide polymerase inhibitor plus ribavirin got the double whammy on our mitochondria.

The article suggests a lipid replacement therapy of various phospholipids to help repair the damage. I am taking lecithin daily as a source of phosphatidyl-choline, -inositol, and -serine.

kim

Hi Kim,

So glad you posted this about the lecithin and phospholipids -- it opened up a wealth of information about repairing mitochondria (the cell membranes that are so important).
Having a general idea of how important good quality fats are in the diet I have been taking coconut and olive oil, and  thought they were enough  -- I didn't know about this specific type of oil with phospholipids.

Does olive oil qualify do u know?
   http://www.ncbi.nlm.nih.gov/pubmed/18598039
I  recently discovered that my olive oil is really not all olive oil, though I thought I bought a good brand, so even if olive oil qualifies not sure how much of the phospholipids I was getting.
Will try to find the link to real vs bad brands.

Do you use soy lecithin or sunflower, and granular or liquid?

[Luna7]

.....
In the case of Sovaldi/Sofosbuvir, unlike the others you list, we have a drug that is considered very mild and low risk in the context of mitosis, please see the following quote and associated link.

Page 10 of http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4542085/

Gaj, interesting....do you know anything about the other drug that is also part of Harvoni? Was it determined to be relatively safe compared to other DAA's?

[KimInTheForest]

Do you use soy lecithin or sunflower, and granular or liquid?

I am using GMO-free soy lecithin granules. But sunflower lecithin is better, so I am going to get some. Sunflower lecithin has more phospholipids, and is almost always cleaner and less processed than soy lecithin. I tried sunflower lecithin once before. It is a very thick liquid the colour and consistency of molasses, and it tastes like crap. So I had a harder time taking it daily than the soy granules. But I am going to give it another try because it is the better lecithin.

kim

[Gaj]

Hi Luna,

Ledipasvir isn't a nucleoside polymerase inhibitor and so works in a slightly different way to Sofosbuvir. Basically rather than locking in permanently like Sofosbuvir does and eventually causing the viral replicon to "die" within the cell, it just acts to "block" the virus from making use of the NS5a site when present at high enough concentrations. But here is some information on its overall toxicity from the European inquiry into Harvoni's approval for use.

Ledipasvir

Ledipasvir targets the NS5A protein of the viral genome. Antiviral activity against the 1a and 1b genotype in vitro was reflected in EC50 values from 0.031 to 0.004 nM. Secondary pharmacology screening and safety pharmacology studies encompassing respiratory, central nervous system and cardiovascular systems did not show any effects expected to be of relevance for the clinical use.
Pharmacokinetic studies with ledipasvir showed very high protein binding, wide distribution, slow metabolism and excretion primarily in bile and faeces mainly as the parent compound.
General toxicology studies in rat and dog up to 9 months did not identify any specific target organs of ledipasvir toxicity but there were some indications of a potential for test-article related unwanted effects on the liver. The high doses employed corresponded to systemic exposure levels approximately 7-fold expected clinical levels. Ledipasvir had no significant genotoxic potential in standard test in vitro and in vivo. Carcinogenicity studies in rat and transgenic mouse are ongoing. Reproduction toxicity studies with ledipasvir showed some slight effects on fertility parameters in females and increases in skeletal variations in rat embryo-foetal studies, likely related to maternal toxicity and considered non-adverse.

Page 30 http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Public_assessment_report/human/003850/WC500177996.pdf

So mostly seen to be fairly benign at the doses human patients take and again in relation to its potential benefits for patients. Of course, being a "foreign" chemical there is probably some impact on our bodies while taking it as evidenced by the variable sides that patients experience but keep in mind that even people on placebos report experiencing sides and some of the sides we feel may be due to our bodies attempting normal repair processes after reduction or removal of the virus. Which is where good diet, exercise and lifestyle come in.

BTW Olive oil is an excellent oil that our bodies can use to our benefit but as you have found many brands have other (usually cheaper) additions. It pays to search around for a good and not necessarily expensive pure one.

[Jazz]

Kim, thanks for posting about lecithin - I'm going to get me some of that! Already sourced an organic sunflower lecithin online

Since I first posted on this thread I have been daily practising my yoga routine, had a session of acupuncture and started taking organic cold pressed hemp seed oil, lipoic  acid and L-carnitine, as well as the other supplement basics Luna mentions, which had been part of my supplement regime already. The acupuncture always helps, as does my yoga practice (carried my fancy light weight yoga mat on my Asian travels and didn't use it once!). My skin is positively glowing and plump - I'm thinking the hemp seed oil is responsible for this welcome effect! And my hands and joints no longer are bothering me and are only slightly warm, so it's all very heartening. Now if I can only sort out why I am at present experiencing frequent swelling at the base of my ear upon chewing (it's not TMJ), I might imagine myself a healthy specimen - of sorts!

Thanks all for your healthy dietary suggestions; these sort of discussions give me hope

Btw Luna, I've not traveled to India, in all my years of visiting Asia, but am thinking I'd quite like to go to Goa next year, as I've heard there is an interesting scene there - not party, rather artistic. And I've always wanted to visit Kerala, a communist state, which boasts a population with a 100% literacy rate.

[Luna7]

I am using GMO-free soy lecithin granules. But sunflower lecithin is better, so I am going to get some. Sunflower lecithin has more phospholipids, and is almost always cleaner and less processed than soy lecithin. I tried sunflower lecithin once before. It is a very thick liquid the colour and consistency of molasses, and it tastes like crap. So I had a harder time taking it daily than the soy granules. But I am going to give it another try because it is the better lecithin.

kim

Thanks, Kim.
I've been taking the sunflower non-gmo lecithin awhile now and it seems to agree with me. I thought I got granular but it's powdered and mixes okay with water. I just take it medicinally and the taste isn't too bad, but I did read of some sauces it could go into.

[KimInTheForest]

Thanks, Kim.
I've been taking the sunflower non-gmo lecithin awhile now and it seems to agree with me. I thought I got granular but it's powdered and mixes okay with water. I just take it medicinally and the taste isn't too bad, but I did read of some sauces it could go into.

Did you buy it online, Luna? In stores, I can only find liquid sunflower lecithin. I would like to try granules. (Powder, not so much. But would try it to see.)

kim

[Luna7]

Hi Luna,

Ledipasvir isn't a nucleoside polymerase inhibitor and so works in a slightly different way to Sofosbuvir. Basically rather than locking in permanently like Sofosbuvir does and eventually causing the viral replicon to "die" within the cell, it just acts to "block" the virus from making use of the NS5a site when present at high enough concentrations. But here is some information on its overall toxicity from the European inquiry into Harvoni's approval for use.

Page 30 http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Public_assessment_report/human/003850/WC500177996.pdf

So mostly seen to be fairly benign at the doses human patients take and again in relation to its potential benefits for patients. Of course, being a "foreign" chemical there is probably some impact on our bodies while taking it as evidenced by the variable sides that patients experience but keep in mind that even people on placebos report experiencing sides and some of the sides we feel may be due to our bodies attempting normal repair processes after reduction or removal of the virus. Which is where good diet, exercise and lifestyle come in.

BTW Olive oil is an excellent oil that our bodies can use to our benefit but as you have found many brands have other (usually cheaper) additions. It pays to search around for a good and not necessarily expensive pure one.

Thanks for the info, Gaj.
I've had people ask if they should take super foods when on treatment and was wondering what you think.
Do you think this could somehow cause the DAA's not to work as well, or what is the current thinking on why some people develop resistance to treatment?

[Luna7]

Did you buy it online, Luna? In stores, I can only find liquid sunflower lecithin. I would like to try granules. (Powder, not so much. But would try it to see.)

kim

I found it here:
  http://www.trimhealthymama.com/
Their brand is on Amazon too, but more expensive.

This is a cute site I found for my daughter, a new mother. Has a little contraption I plan to order for my daughter and grandson...  makes little noodle shapes out of squash

[Luna7]

Btw Luna, I've not traveled to India, in all my years of visiting Asia, but am thinking I'd quite like to go to Goa next year, as I've heard there is an interesting scene there - not party, rather artistic. And I've always wanted to visit Kerala, a communist state, which boasts a population with a 100% literacy rate.

Those places sound very interesting. Kerala is where Amma is from, I believe...Mata Amritanandamayi Devi.
I'd love to visit her ashram.

[KimInTheForest]

I found it here:
  http://www.trimhealthymama.com/
Their brand is on Amazon too, but more expensive.

This is a cute site I found for my daughter, a new mother. Has a little contraption I plan to order for my daughter and grandson...  makes little noodle shapes out of squash

Thanks!

kim

[Gaj]

Hi Luna,
I'm not an expert but with these new DAAs only becoming available recently the research is still continuing into interaction with less common drugs and dietary items. It is known that Harvoni and Epclusa can be affected by PPIs and likewise Daclatasvir by some fruit types like grapefruit and pawpaw but the research has been limited and even very recently suspicion about Taurine as found in many energy drinks was confirmed as an issue for Daclatasvir as noted in the Herbal Remedies and Food Supplements section of this study commissioned by BMS

http://link.springer.com/article/10.1007%2Fs12325-016-0407-5

In addition to herbal and dietary supplements which may increase DCV exposure via CYP3A4 inhibition, others may induce or modulate the induction of CYP3A4 and thus potentially reduce the antiviral activity of DCV. Such extracts include St. John’s wort (Hypericum perforatum; a strong inducer of CYP3A4 and thus contraindicated for concomitant use with DCV) and taurine (commonly found in body-building supplements and energy drinks)

With our current limited knowledge I would recommend avoiding superfoods and supplements (other than maybe vitamin D and B12 if you test deficient) while on treatment and aim instead for a normal basic but well balanced and varied liver/heart healthy diet, that way they can be reasonably confident there will be no interactions. There will be plenty of time to try various dietary additions once they have achieved SVR without putting their treatment at risk.

Resistance is different to food and drug interactions. We can either have resistance prior to treatment or develop it on treatment. It is caused by the rapidly replicating virus mutating to develop strains that are resistant to a particular drug. If that happens then that resistant variety will probably continue to replicate. Keep in mind that the virus becomes resistant not immune to the drug and also most resistant varieties aren't very good at replicating quickly which gives our own immune system a chance to fight back. That is why the 5-10% who don't SVR the first time will usually do so with a longer, stronger treatment and for the rest there are new and better drugs in the pipeline all the time. 

[Jazz]

Those places sound very interesting. Kerala is where Amma is from, I believe...Mata Amritanandamayi Devi.
I'd love to visit her ashram.

I've heard remarkable reports about Ama's hugs. I missed her when she visited our shores. I shall definitely go in search of a hug if I make it to Kerala!

Btw, having made diet and supplement adjustments/changes is anyone noticing any improvement with their joint/muscle pain/ My hand joint pain seems to have resolved. Cross fingers it will remain that way!

[Luna7]

Hi Luna,
I'm not an expert but with these new DAAs only becoming available recently the research is still continuing into interaction with less common drugs and dietary items. It is known that Harvoni and Epclusa can be affected by PPIs and likewise Daclatasvir by some fruit types like grapefruit and pawpaw but the research has been limited and even very recently suspicion about Taurine as found in many energy drinks was confirmed as an issue for Daclatasvir as noted in the Herbal Remedies and Food Supplements section of this study commissioned by BMS

http://link.springer.com/article/10.1007%2Fs12325-016-0407-5

With our current limited knowledge I would recommend avoiding superfoods and supplements (other than maybe vitamin D and B12 if you test deficient) while on treatment and aim instead for a normal basic but well balanced and varied liver/heart healthy diet, that way they can be reasonably confident there will be no interactions. There will be plenty of time to try various dietary additions once they have achieved SVR without putting their treatment at risk.

Resistance is different to food and drug interactions. We can either have resistance prior to treatment or develop it on treatment. It is caused by the rapidly replicating virus mutating to develop strains that are resistant to a particular drug. If that happens then that resistant variety will probably continue to replicate. Keep in mind that the virus becomes resistant not immune to the drug and also most resistant varieties aren't very good at replicating quickly which gives our own immune system a chance to fight back. That is why the 5-10% who don't SVR the first time will usually do so with a longer, stronger treatment and for the rest there are new and better drugs in the pipeline all the time. 

Thanks for the info.

More than specific interactions in the stomach that might render the DAA ineffective, I'm wondering about the anti-oxidant effect on mitochondria. Would that 'help' the virus? I guess nobody knows that for sure at this point but I see it being discussed a lot in relation to both viruses and cancer.

[Luna7]

I've heard remarkable reports about Ama's hugs. I missed her when she visited our shores. I shall definitely go in search of a hug if I make it to Kerala!

Btw, having made diet and supplement adjustments/changes is anyone noticing any improvement with their joint/muscle pain/ My hand joint pain seems to have resolved. Cross fingers it will remain that way!

I hope you make it to Kerala!

My muscle pain is certainly improving -- I'd say about 80% there...

[Jazz]

Luna, did you end up removing eggs and legumes from your diet? I haven't, but I don't eat as many eggs as I used to. The addition of the extra supps and hemp seed oil seems to have coincided with my improvement. It's certainly encouraging!

[Luna7]

Luna, did you end up removing eggs and legumes from your diet? I haven't, but I don't eat as many eggs as I used to. The addition of the extra supps and hemp seed oil seems to have coincided with my improvement. It's certainly encouraging!

I didn't remove eggs as I want the lecithin (or choline in them), but I don't eat a lot of them.
I did discover I had a problem with nuts though, and wonder if other legumes would also be problematic. Reading about lectins and how they can affect the gut/brain connection is interesting, and it seems that some have more problems with these foods than others.

[sammantha55]

Luna7,is it best to take these  anti oxidants while on tx,I already juice and take alpha lipoic and NAc supplements for years,I believe  doing this has saved my liver throughout the 30 years I've had this ,O fibrosis or scarring  and grade o-1 inflammation,juicing beets ,carrot ,dandelion greens a or any greens really help with detoxifying and helping with liver function .

[Luna7]

Luna7,is it best to take these  anti oxidants while on tx,I already juice and take alpha lipoic and NAc supplements for years,I believe  doing this has saved my liver throughout the 30 years I've had this ,O fibrosis or scarring  and grade o-1 inflammation,juicing beets ,carrot ,dandelion greens a or any greens really help with detoxifying and helping with liver function .

Hi Samantha

I wish I knew for certain the answer to your questions. I did research these issues a bit awhile back, but I would need a couple of degrees to fully understand it, and even then it appears some of the researchers themselves don't quite know what is going on.
Basically, these drugs are designed to damage cells, and while they try to restrict this to the virus it appears there is damage to healthy cells too. It's all the more confusing when considering that the virus is part healthy cell and part virus -- the virus hijacked a healthy cell and still has components of both.
So the issue is, what happens when you use superfoods and supplements to strengthen your cells -- what is this doing to the virus...is this hurting or helping the process of getting rid of the virus?

As you've been aware of, and I don't doubt at all that the superfoods and supplements you've taken protected your liver more than had you been eating poorly, these superfoods are indeed powerful substances.
Personally, I decided that should I need to undergo DAA treatment again I would not take the superfoods or supplements, just to be on the safe side. I figure it wouldn't hurt too much to back off of that for only 3 months, and eat a healthy organic diet only while on DAA treatment to try and make up for a little of the nutrient deficiency.

When I was on treatment I only took a drop or 2 of vitamin D some days, and some vitamin C.

[Gaj]

Personally, I decided that should I need to undergo DAA treatment again I would not take the superfoods or supplements, just to be on the safe side. I figure it wouldn't hurt too much to back off of that for only 3 months, and eat a healthy organic diet only while on DAA treatment to try and make up for a little of the nutrient deficiency.

Sammantha,

This is great advice from Luna! We just don't know enough yet about what interactions there will be between these new drugs and supplements (and maybe superfoods). A healthy, well varied diet with everything in moderation will give us sufficient nutrients to live on during treatment then we can supplement however we feel necessary after achieving SVR.

[Karin]

Hello, I have not been on the boards for quite a while, but now i need some reassurance i am not alone    I finished my 12week Harvoni treatment 5 weeks ago on Oct 11th.  I was feeling ok till about 2 weeks slowly it has gotten worse. My digestive system has gone bad very bad i cannot eat anything without tremendous pain and nausea. My stomach is so bloated i cannot wear any of my pants, so i stay in pj's  Also my body aches, muscles joint tendons everything.  I have low energy and can barely get out of bed even after 9 hours of sleep  HELP PLEASE!!! i have a very clean diet also. Going to get an abdomen ultrasound tomorrow but that will not tell me why the aches and pain ? How long will this last.

[SongofLove]

You may be suffering from Candida overgrowth. http://wholehealthchicago.com/2009/05/03/candida-overgrowth-syndrome/

[Karin]

Thanks SongsofLove for your suggestion, but i really do not think that i have that. Just does not fit but i do appreciate your help 

[SongofLove]

No problem. I hope you dont have this problem. You do have the same post Harvoni pains that myself and at least 2 personal friends have, and we are suffering from Candida overgrowth. I hope the Doctors can figure it out for you...Peace

[Karin]

maybe I'm wrong??? so confusing and feel so lousy cant even think straight. Another side effect is my vision its so weird hard to focus,and my eyes hurt and i cannot read so even looking on the boards to read post is hard.
How did u get diagnosed? what kind of Dr found it? what is your treatment? thx

[Karin]

maybe I'm wrong??? so confusing and feel so lousy cant even think straight. Another side effect is my vision its so weird hard to focus,and my eyes hurt and i cannot read so even looking on the boards to read post is hard.
How did u get diagnosed? what kind of Dr found it? what is your treatment? thx

[SongofLove]

Really sorry to hear about the vision probs. Mine wasn't bad, but another friend has the same probs, as many other post harvoni folks.I posted info on the 'Lyme disease' thread on this forum. Please refer to it...I gained 14 lbs in the last 8 weeks of 12 week treatment. Still have bloated stomach. Just like you, i felt good after week 12, but 2 weeks later the bottom fell out. Bad...Rest those eyes, but research when u can. I hope u dont have this and that your symptoms fade soon. But if your doctor tells you "well, all of your numbers are normal, you should feel ok now", and you know you don't, ask for 'Blood culture test, and a stool sample test for Candida antibodies. They exist. In the meantime cut out all sugar from diet, if u haven't already. Have u ever had antibiotic treatment? If yes, u are a prime candidate for good/bad bacteria imbalance in the gut, which can lead to bad bacteria (candida) overgrowth, which can lead to 'leaky gut syndrome', which can mean food allergies and many of the symptoms we share. Rest is your friend. So is google. Awareness is key...peace.

[Luna7]

Hi Karin,

There are certain foods that are very effective for repairing mitochondria.
Mitochondria can be damaged by medications.
The following is what I found helpful, and it really is pretty much a diet that eliminates candida too.
I hope you feel better soon!
 
     GOOD FATS & LOTSA VEGGIES & OTHER STUFF

A tablespoon or more of coconut oil, lecithin, or olive oil (make sure it's real olive oil).
A blended green drink every day or at least a few times a week (kale, spinach, celery, avocado, lemon juice).
Minimize carbs (basically I try to get all my carbs from veggies & do not eat grains), and make up for those calories with more fat and moderate protein
Organic as much as possible (to reduce pesticides used on non-organic food, and to make sure food has more nutrients as non-organic food is grown on poor soil).


     BONE BROTH

Bone broth is different from plain broth in that it's boiled for many hours and contains nutritious stuff from the bones & collagen that support brain health.
I can't emphasize enough how this stuff supports brain health. Grandma's chicken soup vindicated! lol  And in the old days they were smart and used to chew on bones.

You can do this in a slow cooker if you don't want to leave a pot on the stove for hours. Or get and Instant Pot that makes it in 2 1/2 hours (a new kind of pressure cooker).
Just add good bones to a pot (from organic, grass fed cows, or organic free-range chickens -- fed non-GMO food and raised with no growth hormones or antibiotics).
I cook a chicken then use the meat and save the bones for later.
It's getting easier and easier to find good sources now but you will probably have to search around or ask at the health food store. Butchers have soup bones too.
Add a few veggies (few carrots, onions, garlic - or look online for recipes) and cook, then strain and refrigerate.


      WHEY SMOOTHIE DRINK

Great brand here:
https://www.amazon.co.uk/dp/B007FCPUS8?psc=1
I linked to the vanilla variety but they have other flavors that are sweetened (supposedly not with bad stuff but best check. I get the plain and use Nustevia plus vanilla or almond flavoring)
It's organic, from grass-fed cows, GMO & antibiotics-free,non-denatured.
Look @ all the stuff in the last window -- those are what the brain needs to function well.

Sweeten with Nustevia as it has less of a bitter taste:
https://www.amazon.co.uk/Nunaturals-LSTEV-PLAS-2-NuNaturals-Clear-Stevia/dp/B00009Q95J/ref=sr_1_4_a_it?ie=UTF8&qid=1478198437&sr=8-4&keywords=nustevia

Recipe FOR WHEY DRINK
12 drops of Nustevia
Vanilla extract, cocoa, lemon extract, almond extract or whatever u want
1 scoop whey powder
Half cup water
5 or so ice cubes.
Blend for one minute, and the whey creates a thick yummy substance to eat with a spoon - like whipped cream

     KOMBUCHA
This can be found in the health food store if you don't make it yourself. Must be raw and usually will say so on bottle (don't want pasteurized as that removes the good stuff). It's kind of pricey but I just have half a bottle every other day (8 ounces).
It provides the enzymes that digests the bone broth and whey drink, among other things that support gut/brain health.
Our gut -- all those micro-organisms - is the biggest part of our immune system, and there is a connection between gut health & brain health.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

        FERMENTED VEGGIES (not part of the morning ritual, but taken here and there throughout the day with food)
   
KIMCHI or Fermented veggies from health food store (I use fermented cabbage, but it must be in the refrigerated section and not something in a can as it has to have the live stuffs in it).
I take a bit here and there with meals, and it supports digestion, provides enzyme creation, and helps the gut/brain thing with lots of micro-organisms that help the immune system.
Yogurt has probiotics too, but there are loads of them and fermented veggies have many more varieties.

I am finding that fermented veggies is working as well as the kombucha for me, taken with each meal.

Luna

[FutureThinker]

Hi Karin, I am very sorry to hear how poorly you're feeling at this point post-treatment.

Have you contacted your doctor? I'd give him a call and get in to see him, to see if he can make any recommendations that will ease your discomfort.  FT

[Lynn K]

Karin

So sorry to read about your suffering but really we are just fellow patients and cannot begin to attempt to diagnose anyone. What ever the cause of your problems you will need to see your doctor for a diagnosis could be anything right now.

Hoping you and your medical team get to the bottom this ASAP

[Luna7]

....so confusing and feel so lousy cant even think straight. Another side effect is my vision its so weird hard to focus,and my eyes hurt and i cannot read so even looking on the boards to read post is hard.

Hi Karin,

I just remembered something I should add. I don't know if this affects you but it might be something to consider.
On this forum you can find people talking about a realization that some other condition has emerged or become more severe after treatment.

Like you, one of my strongest and most annoying symptoms has always been blurry vision, along with extreme brain fog. It was most severe until I got rid of the HCV, but does return from time to time. I think it's a reactivation of the Epstein-Barr (EBV) virus or some other (there are so many of them lying dormant in everyone's body...sometimes honestly as I researched I did not want to know)!

Anyway, I'm not sure a traditional doctor can help with this kind of thing much. I mean they can diagnose some of these things, ascertain through testing if the EBV is active, but they don't have much in the way of treatment.

I have discovered that non-traditional doctors are much better treating these kinds of conditions, primarily through diet.
 
I'm not saying, however, that I don't think you should see a traditional doctor too, as Lynn advised. You've got many severe symptoms that might be helped by traditional medicine too.

Just don't give up hope! The solution is out there! I had to research medical and nutritional abstracts and talk to others with similar symptoms until I found what worked for me, and everybody is different so you have to tweak until it fits you personally.

Luna

[Karin]

Thanks Luna and Lynn for your posts. So i think one thing i might have come up with is that any health problems we may have had prior to tx could be enhanced during or after completing tx. Does that make sense??

[Lynn K]

No idea about that but I  personally tend to doubt that being a factor. However I am sure others will disagree with me on that.

[Karin]

Does anyone know that answer? I feel like we are guinea pigs cause the people who put Harvoni out here for us do not have any answers for why some of us are feeling really bad. I know my Dr. says there are no side effects, and when i had mentioned the side effects i was having during tx he looked at me like he never heard of such things ? Maybe we jumped on this cure to quick and may be paying a price for  that. Its great for others that are doing well but not for us. Maybe they should have known some people may have all these awful side effects before they released it? I'm sure i would have thought twice about it. I hope they are telling people now so they are able to decide. Does anyone know if they are? I'm sad and scared 

[Lynn K]

One way to make sure is to use the contact information found in the prescribing information sheet copied here:
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

They can't tell people about effects if they don't know about them

All they know about was what was experienced by the brave souls who went before us in the clinical trials the true "guinea pigs"

What you and others are experiencing did not occur in the clinical trials. One condition unknown in the trials a counter indication for patients taking amiodarone developed a serious bradychardy which later was added to the prescribing information sheet based on post clinical trial data.

But for that to happen people need to report their experiences to either Gilead or the FDA

For folks like myself who had failed all prior attempts to cure and were essentially dying from liver disease for myself I had no choice I would have walked over hot coals to be cured of the hep c virus before I died because of it.

Many out there must take any and all risks to be cured no matter the potential for future consequences as the consequences we are already facing are life ending.

I hope you find your answers soon and please let the FDA or Gilead know of your experiences so they can investigate

Best to you

[FutureThinker]

What we must keep in mind is Harvoni was approved by the FDA in October 2014.  That is only 2 years ago!  There is no long-term data as of yet, due to the newness of this drug, plus all the other DAAs.  This was my biggest concern in deciding to start treatment now or wait for the long term data.  I chose to start treatment after waiting 5 years, and for me, it was the right decision. I believe it will turn out good for you, too, Karin, it's just going to take some time.

This is a personal decision for every person considering DAA treatment. The fact of the matter is that they (clinicians/researchers) will be learning more about this treatment as time goes on ---- but this is going to take time to sort through why some people have negative experiences, and others do not. There is a lot still to learn about these drugs.

Again, I am sorry you are not feeling well, but it may just take more time.  My energy level is slowly but surely improving, but it is taking some time. We are all complex beings with many things at play w/ each of us.  Hang in there!

Perhaps a new doctor would be helpful? FT

[Karin]

Thanks Lynn and FT for your input, makes sense. Of course they do not know about our post tx health problems since its only been out since 2014. So ya we just have to hang in there (whats the alternative) It's just hard for myself,after living such an active and healthy life before tx. I yearn for the way i felt 4 months ago I never felt this bad while living with the virus. I was an aerobic instructor,dancer, hiked,camped, biked, loved being busy. Now I'm a shut in not able to barely take a walk (but i do cause my dog needs walks) I was always fit now I'm 15 lbs. over weight and all flab not a muscle left. My liver was a f4 on my fibro scan but otherwise the hep had not done anything else to me, hmmm unless it was the cause of my breast cancer in 2010??  Yes the alternative (death) would be worse, but for me right now I feel like I'm half dead. I am not the same person i use to be living in this pain and exhaustion. Again thank you for your advice and thoughts they do help, and yes Lynn i will contact who i need to about my issues so people coming behind us know what could happen to them,although like you said most people would probably choose tx still, and i completely understand why u did, for me maybe i would have thought about it a bit longer and researched more. I was not at deaths door but who knows how long it would be till i was. I believe everything that happens to us while we are alive is for a purpose, kind of a lesson.... so i hope we are  learning what we are suppose to be learning  xo  P.s. what doesn't kill you makes you stronger

[brie41]

I can  relate to this conversation.  I also put off going to the Dentist for a few months after being cured.  When I went in for my cleaning I explained to my hygienist that I had concerns.  She totally understood and went about showing me that all the tools were still wrapped, etc.  I felt relieved and empowered to a certain degree.  I think if we all use universal precautions as often as we can, we will be fine.  But thanks Lynn, I now have a new worry, lol!!!  Brie

[Lynn K]

I just don't worry about stuff I have been swing the same dentist since 2003 and assume any reputable medical facility or dentist is using appropriate standard procedures they need to to protect their licenses.

I don't waste the mental energy on things that have a low probability of happening I have better thoughts and ideas to occupy my mind. There are much more important things to think about