Fulminant central nervous system demyelination associated with interferon- therapy and hepatitis C virus infection

[Myown]

I remember making a comment to someone on forum saying "isn't it odd that we seem to see so many people being dx with MS. I personally know several people. At that time, I said I wonder if this could somehow be related to HCV, since hardly any doctor checks people for HCV unless the patient themselves asks. Now here in this study it says that the person developed MS AFTER the interferon theraphy,,,but what IF the HCV did in fact cause the MS and the interferon only brought it out - as it seems to do with other diseases/autoimmune after tx. Notice it says "neuropathological confirmation of MS associated with IFN- therapy and HCV infection is lacking." I hope they start to research in this area soon. My brain scan did show change in white matter - now whether I had it before tx or after - I'll never know...BUT the only way doctors will know if the interferon is causing brain abnormalities (or if the abnormalities are there already from the HCV) is to INCLUDE a brain MRI as part of the HCV exam. Because really, we have a deadly disease that affects all of our organs and all we get for an exam prior to tx is a few pushes on our stomach and some blood tests - maybe an eye exam. Since we DO KNOW this disease affects our entire body/brain, there needs to be more tests prior and post tx - IMO.

I found this interesting and wanted to pass it on to those who may also find it interesting.


http://intl-msj.sagepub.com/cgi/content/abstract/13/9/1100

Hepatitis C virus (HCV) infection is common in the general population and may coincide with disease in the central and peripheral nervous system. Interferon- (IFN-) is used as treatment for HCV infection. The therapeutic benefit is assumed to result from activation of natural killer cells and CD8+ T cells. Despite its beneficial effects, it has been associated with a number of autoimmune disorders, such as chronic inflammatory demyelinating polyneuropathy and multiple sclerosis. Several clinical reports including magnetic resonance imaging exist, but neuropathological confirmation of MS associated with IFN- therapy and HCV infection is lacking. We report a case of a female patient with chronic HCV infection who developed `acute MS'-like demyelinating disease after IFN- administration, with extensive lesions throughout brain and thoracic spinal cord. The patient died after a disease duration of 6 months. Brain autopsy revealed Baló-like demyelinating plaques with positive HCV sequences within florid lesions. The development of fulminant demyelinating disease after administration of IFN- suggests that autoimmune mechanisms such as T cell mediated tissue damage might be initiated or aggravated by IFN- therapy. Additionally, the presence of HCV RNA within the demyelinated lesion indicates a possible role in triggering or propagating disease. Multiple Sclerosis 2007; 13: 1100—1106. http://msj.sagepub.com


Key Words: CD8+ T cells • concentric sclerosis (Baló) • hepatitis C virus • interferon- • multiple sclerosis (MS)

[Ginger12521]

We've discussed Coconut oil on an Alternative HCV board in the past, and there's a few folks that claim Coconut Oil was beneficial to them....especially those dealing with HCV related fatique. This could be due to the claims of Coconut Oil benefiting the thyroid?

Also found it interesting you brought up the subject of pituitary insufficiency. I've been using Vitex on and off for Peri-menopause symptoms, and find it gives me a nice uplifting feeling. After doing more research on Vitex, I read that Chastetree (vitex) can stimulate the pituitary gland also.
Appreciate your input :)

[merryBe]

I was just perusing TV when I noticed Lorenzo's oil airing...

it seems to me the myelin project has a lot to offer as far as education.

I will say as the liver is compromised so all the fatty acid chains that need to be metabolized or manufactured in the liver are compromised. We do nw know of the myelin/fatty acid connection, so it's not surprising that this disease would lead to MS and related things.

what I found facinating was that even as one gland, my thyroid, was losing it's fatty acids I began to crave the one oil that contains the highest levels of that Omega 9 (if memory serves) fatty acid chain...
namely coconut oil.  Later in research I found many thyroid patients crave this, although few know that their instincts are telling them which fatty acid they lack and need to restore that particular tissue.

what I find disturbing is that medicine used to tell MS people to avoid fats and oils...
what we now know is that there are ways to regenerate and halt the disease process.
One way is to destroy the underlying viruses taxing the liver/ second is to restore diet and absorption, and naturally to find ways to get the calcium/fatty acids that nerves need to maintain myelin to them. Cheifly here one needs to also make sure the signal to repair tissue is getting sent.
Because HCV can also cause both sleep disturbance and pituitary insufficiency these lead to lack of signal to repair. this is akin to having gas in the car, but having a paralyized hand that cannot turn the starter on. One has to make sure enough growth hormone is still being secreted to allow for the normal nightly repair of individual cells.
I think those with HCV, especially with neuropathy should have an IGF-1 test and make sure they are still making growth hormone, without which all systems will degenerate and shut down as the death process takes over in it's absence.
maryB

[Myown]

does your Neurologist see many HCV patients? Or any? I would think that they don't cause the "brain" connection with hcv is not really talked about too much or hardly at all - or EVER come to think about it.

If we took a poll on forum I bet very few if any have Hep docs that have discussed the brain at all.

[Myown]

In conclusion, we emphasize the importance ofHCV
screening in patients with ADEM because acute CNS demyelination
might be the first manifestation of HCV infection.
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Finally at least we see that doctors are connecting some dots:)

[drew1985]

Yes,

This just seems kind of weird - but since ADEM is classified as "borderline" MS, I think that I should probably ask my neurologist what he thinks.

I'm wondering if my encephalitis was somehow caused by the "acute" stage of HCV. I just read this article which has me wondering:

"Acute Disseminated Encephalomyelitis Associated
With Hepatitis C Virus Infection"
http://archneur.ama-assn.org/cgi/reprint/58/10/1679.pdf

I am just kind of scared that the medications might kick the "borderline" MS into full MS.

[cjacks]

Drew

I wanted to respond , but I'm bleary eyed tonight . You are not alone in this .  And by no mean does this spell MS for you . We'll talk .

Jo

[drew1985]

Wow, this is very weird.

I just found out that I had HCV. Back in 2004 I was hospitalized for a few weeks (collapsed after having flu like symptoms for 3-4 days). When I woke up in the hospital I was seeing double vision and I couldn't walk for about 3 weeks (without help).

The doctor was unsure of exactly what I had. I DID have lesions of my brain, so the doctor concluded that this was either my first outbreak of MS, or it was either ADEM (Acute Disseminated Encephalomyelitis). He said if I had ADEM it was caused by an unknown virus (they checked me for multiple viruses and came up empty handed).

Basically, they just told me to follow up with a neurologist. I followed up with one for about a year and he said that it was probably ADEM and just to contact him back if I ever had any numbness, tingling, etc. - which I haven't had.

Now that I know I have HCV - I wonder if the HCV was related to this incident that I had in 04'.

To this day I am still unsure if I have MS. I've never had any symptoms aside from the acute symptoms I had in 2004. I haven't tx'ed yet - im wondering if I should follow up with my neurologist before I decide to.

[cjacks]

MO,

I posted Harry on the other side and sent you a PM .   Thanks for the referral  :)  .  

Jo

[Myown]

MO    Thank you so much for making me feel comfortable here ..  I would absoluely love to be in touch while you do your tx  .

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You're welcome, I'm glad you feel comfortable. And yes, do keep in touch.
Gotta run, see ya later!
MO

[Myown]

I don't know if Harry stepped away from his computer, but this is his post from the otherside.
http://www.medhelp.org/posts/show/437322


Another bomb dropped
by HARRYBEADS


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HARRYBEADS
Madoc - ON
Mood: HARRYBEADS is finished treatment
  



, 45 minutes ago
   Thought I was doing great after finishing the 48 weeks for 1a with an undetectable.

   Yesterday I went to the pain clinic to deal with the RSD or neuropathy I had for years prior to treatmemnt and they dropped the big bomb on me MS, the right side of the body is hyper while the left  is nonresponsive. They advised me to quit treatment ASAP, told them i'm done.
So... it's real bad according to these guys to treat hep c if'n ya gots da MS cuze it's an autoimmune disease.

   Miles and miles of tests lined up now the best is the spinal tap, can't wait.

   Don't think this dragon has a death mode, like Hep c does.

Whish me luck and prayers all around will help.


Harry

[Myown]

Check your "Inbox."

[DoubleDose]

Thanks to Myown, for keeping this thread active!  I wanted to highlight some of the references to interferon in the medical studies quoted near the top of this thread.  Reading these few comments by the researchers, helps you to understand why some of us complain of post-tx problems, and have developed strange, and sometimes debilitating syndromes that we never experienced before interferon.  Here are a couple of the comments:


"nterferon- (IFN-) is used as treatment for HCV infection. The therapeutic benefit is assumed to result from activation of natural killer cells and CD8+ T cells. Despite its beneficial effects, it has been associated with a number of autoimmune disorders, such as chronic inflammatory demyelinating polyneuropathy and multiple sclerosis."  and,

"The development of fulminant demyelinating disease after administration of IFN- suggests that autoimmune mechanisms such as T cell mediated tissue damage might be initiated or aggravated by IFN- therapy."

Now I have to ask, where are all the post-tx studies by drug companies, or hepatologists, or anyone, tracking long term issues that might be developing after, and possibly due to interferon therapy.  I know no one has contacted me to ask how things are after tx.  Have all of you who have treated been contacted for your feedback by the medical community????  Gee, can I guess your answers in advance?......

DoubleDose

[Myown]

harry, this is the thread I was refering to. For others that are wondering why I flagged Harry, you can read his post on the other side.

Harry you may want to print out the study that I posted and bring it to your doctors. You may also want to talk to cjacks

[Myown]

just read something and I wanted to pop this back up to the top for that reason

[cjacks]

njrpo842,

I'm sorry you've gotten this dx.  I can't tell you whether or not to treat.   When I got sick , I was very disabled.  For the first two yrs. I was in bed, only getting up for the bathroom or dr. I slowly got to were I could move around , in the house a little .

So when a dx. was made in 90  of course I was thrilled with any tx. I was young-ish ( forty) and very ill.   Didn't know I should weigh anything . I only wanted to be better and this is what dr. said to,( Columbia Presbyterian, N.Y.)  The first tx. was interferon, without success.

  It took nine more yrs of not being well to find ITF/ Reba combo .  I was forty -nine and wanted to try to have some kind of life( Which had been on hold since I was thirty six). So I did tx again . ( with all the side effects - there are meds now for side efects , In the olden days   :)     we were not offered anything other than OTC , I had no idea I could ASK for them,  sooo naive)  

I would do it again , even knowing that I may develope MS down the road , ( the MS may have been there anyway )   I needed to try ...    

Now finally getting to my point..  I don't know your history    but if I were sixty-five and not feeling too bad, I'd go the herbal route .  Go to Duke and tell the docs your concerns , I think the medical profession is coming around to the possibility of a more conservative approach to tx.  and holistics.     PLEASE stop smoking  , that would so improve your health greatly

I hope I helped ..  I did not mean to scare any one away from tx.   I get result back from LP soon , will have more answers for myself .If you want to PM that would be fine , love to hear what's up

MO    Thank you so much for making me feel comfortable here ..  I would absoluely love to be in touch while you do your tx  .

Take care           Jo

[merryBe]

more I read the more apparent mandatory testing should be.
yes, a whole body MRI and IFG-1 should be standard before tx if HCV is found, not just a biopsy.

we call the other disease like this ne "Accquired immune deficiency syndrome (AIDS) for a reason.

the reason is equally valid for HCV.
It is actually a disservice to call it this. It is a virus that breaks down multiple systems, as does the tx.
It effects the immune system respnses and can therefore manifest as myriad other disease. Once we dicover the root disease, we may be able to halt the progression of the other damages being done, but this will depend upon whether we get good diagnosis and tx of our immune systems and endocrine systems as well both prior and post HCV tx.  That includes making sure the tx does not permanently comprmises our  lymph or endocrine systems. there  are ways t halt and reverse demylination caught in time....much of this is dependant on restoring underlying health and or eradiacation of what has begun the cycle of degeneration.

[njrpo842]

I hope you are doing well.
I am new at the forum and been reading your postings, it kind of freak me out a little since I was diagnosed with HVC and told by my Dr. to start treatment as soon as possible. He refered me to Duke( since I live in N.C.) I am 65 years old, diabetic and hypertensive, to top it off I smoke and very nervous person, I am very afraid of the so called side effects and what I have read here today, I am seriously considering to try some herbal or holistic remedies and pray for the best, I have heard a lot about Maximum Milk Thistle. What do you think?  Will appreciate your coment.

[Myown]

Alot of times these scans can freak us out until the doctor reads them and shrugs and says "that's nothing."  That happened to me when I saw "reactive Lymph nodes" on mine and the doctor in Boston said don't worry about it. I hope he's right though :)
But I guess I did stop worrying about it cause I forgot about it until I just mentioned it to you. Now because I reminded myself, I will think about my "reactive lymph nodes" the rest of the day. lol

[beamishboy]

excellent,enlightening & disturbing thread.  

[alagirl]

I was previously well prior to gettiing hcv, except for the anemia, which was under control.  The day I began treatment, before I took my first shot, my doc did think to send me for an entire MRI series.  Now I had only had hepc for three months, but that MRI - which I just got my hands on - is horrible.  I'm pretty scared about it.  I'm going to go talk to my hematologist, since he happens to be an oncologist.  

Prior to this, all of my MRI's have been normal save for three small benign tumors in my liver.  Now I have a huge tumor on my ovary, a swollen inguinal lymph node, and this huge portion of bilateral gluteal fat stranding, more prominent on the left side.  the left side of my lower lung is scarred (I've NEVER had a serious cold or illness involving the lung), and I now have a splenule (that's new too).  I'm going to have them run my entire body through the PET scan.  That fat stranding can happen adjacent to cancerous tumors, and it also can happen due to infection.  I'm going to go pick up my other MRI's from Birmingham and see what the hell is going on.  Surely to God this couldn't be from just my three months of hepc, even though I got so sick from it?

[Myown]

Yup,I was hoping you saw this thread. I was going to PM you if you didn't. But it really hit me cause I think it was to you that I had just recently said - maybe in one of the "occult" threads - that doesn't it seem odd we are seeing so many people getting MS.

Now whether its the bodies own interferon in high gear trying to rid the HCV virus or maybe some other virus,,,but to me it seems plain as day that since the "artificial interferon" can cause MS - so would someones own interferon if over stimulated cause it.

But I do think everyone with MS should be tested for HCV and if neg, they should be checked for other viruses or anything that would cause their body to produce excess amounts of interferon.

Just as it seems that those that know they had hep c for many years,as non A non B, many times these people will have autoimune diseases - psoriasis etc.

And many of us have borderline ANA. I remember you said you do and so do I. Now if pushed over the border - who knows what will manifest. This I believe is why so many people come out ot tx with post tx sx......before tx their own interferon was in high gear causing borderline- but unable to identify - autoimmune diseases,,,but then add mucho interferon once tx starts and it pushes you over the hill into more symptoms of the underlying autoimmune disease or some even get full blown autoimmune disease.

[DoubleDose]

I think that it may boil down to a situation where either and both of the above may be responsible for creating these problems and diseases.  I think we have seen evidence that HCV alone can and does often cause a range of other serious diseases, in some people, aside from liver disease.  We also see clear evidence that the interferon can at times generate very serious syndromes, or actual disease processes on its own, and not only within previously HCV infected patients.  The last part of the equation is that HCV may also create the underlying mechanisms for various diseases to manifest, but it may be a long slow process.  The interferon, combined with the underlying HCV processes at work, may both together push serious diseases or syndromes into active mode in some people.  Ultimately there may never be a clear 'either/ or' answer to what is the real cause, because it may be that both the interferon and the HCV  act synergistically in many cases to cause these problems.  It could range from being totally due to the HCV in certain cases, to being any combination of the two, or at the other extreme, may be entirely due to reactions to the interferon, in others.

Now, the question of whether MS might be possibly caused by interferon, or HCV in some people seems to me to be very likely, and I would think that maybe this is because the interferon and the HCV really provoke similar responses by the body.  Maybe the HCV just does it in a less intense way, over longer, more gradual periods of time.  Probably in both cases we are looking at fallout and illnesses generated by immune system responses, and internal self-attack within various systems.   Maybe some people develop diabetes, or thyroid disease, and others develop EMC, vascular disease, or MS, Lupus, etc.  Most of it would be generated in similar ways, whether by the HCV or the Interferon.  That's my take on it anyway.

DoubleDose

[Myown]

I have major cog fog at the moment , I feel my responses to you are woefully inadequate . I do send my sincerest thanks and hope to get some brain power back so I can discuss this in greater depth with you or anyone who is interested .
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Your welcome.
You're doing fine. There are big brains on this forum and I am not one of them. We all try to provide information for one another to bring to our doctors. Always feel free to post and ask questions. Someone will always try to help.

Keep in touch with us all. I will most likely be going underground (only private messaging) once I start treatment and just come on when I need to ask questions,,,(and you can private message me whenever you like also.)

Good luck!

[cjacks]

OMG..     Thanks so much for all the info .  I have many questions for the docs. These sites will certainly  give them something to think about .  

I have major cog fog at the moment , I feel my responses to you are woefully inadequate . I do send my sincerest thanks and hope to get some brain power back so I can discuss this in greater depth with you or anyone who is interested .  

I would love to find more individuals who are having this experience .  I've tried going through the search , but didn't find much . I'm running out of steam already . I'll try more later

Jo