Brain Fog II and Central Nervous System infection

[DoubleDose]

We recently had a very extensive thread relating to brain fog, in which questions about CNS involvement were raised.

I find the brain fog issue very intriguing, since it rarely relates directly to viral load, or even stage of liver damage, etc.  The real question is:  what is really causing the brain fog, and often the oppressive fatigue that accompanies it?  Some believe that it is the result of cellular and humoral immune responses to the virus, which act in ways like a lupus or similar autoimmune process.  One other possibility is that the virus may actually INFECT the brain, and/or the central nervous system, thus directly causing these problems.  

Much more research needs to be done, to pin down causes, and to determine the best ways to deal with this set of symptoms, both in the pre-tx individual, and often in the post-tx / SVR patient.
Many continue to experience similar symptoms, well after tx.  We need to know if there is or was a direct viral infection in the brain or CNS, and in the case of SVR's, what to do next!  Will newer treatments address these issues???  

Also, there is the question of transmission, which I seem to constantly harp on.  My concern is that this may turn out to be a more multi-faceted virus than ever previously thought.
IF the virus is found to infect tissues other than blood and liver (why only these two, I always wonder???), then there may be other modes of transmission that do not show up on standard blood/antibody testing. Is there a salivary or sexual virus xmission,  not showing on blood HCV testing?  Thoughts?

DD

[Imagine]

I don't have any real answers (this statement seems to be common with this disaese (disease)) but I do have my family experience to refer to. I have probably had this disease for thirty plus years. I have been married for thirty years and have three kids, 25,22 and 20 years old. I have had a normal sex life and had a vasectomy after our 20 year old daughter was born. After I discovered I had hcv four years ago my family was tested and no evidence of hcv was detected. I'm not sure what the facts are but can just relate to my own experience.
                                            AB

[Imagine]

PS - (The fog clears momentarily) They also have not shown the other symptoms that possibly could relate to the CNS. In other words, they are not experiencing fogginess or extreme fatigue.

[Califia]

I don't have any speculation to share...but how are  you doing?

[bunkywoo]

Glad to see discussion on these topics. I am 2 years post-tx and had HCV for 10+ years before dx. One thing I noticed about the brain fog during tx and about 6 months post, was my congnitive ability. Just couldn't put thoughts together and think. Now I've pretty much got that back to normal, but the short term memory issue is another thing. I am 44 and constantly find myself acting like I'm 80 when I leave the house (or even in the house) checking to make sure the stove is off, the iron is off, etc. I will do or say something and 30 seconds later can't recall if or what I said. This is extremely frustrating.

My second issue is with the fatigue and general "crappy" feeling somedays. I just got my 2 year post PCR test back (negative) but had been thinking the virus was back. I have other issues as well which could all be related (sinuses, allergies, IBS, etc.). It is frustrating not feeling "great" all the time especially once you clear. However, aging is a factor; but I just can't help but think that the HCV has forever changed my body and won't leave completely.

Just my 2 cents - hope everyone is doing well.

Laurie

[cuteus]

I agree with you on that, I think HCV's long term invasion permanently damages other tissues, not just the liver. Or maybe our immune system's reaction does. All those years of overactive system must leave some permanent "stains". I also was hoping my aches would go away after clearing, but I am still aging, so I am still aching...;-[ more so in the winter of course, time to move to the Caribbean for good.

[cuteus]

check the section on neuropsychiatry and cognitive disfunction in this article from one of my favorite sites:

http://www.projectsinknowledge.com/init/G/1700/1700-TxReporter.pdf

[Imagine]

Sorry, seems I intruded on a closed thread

[Micro2]

5yrs ago biopsy - grade 1 stage 1....3tx's in a row (total of 20 months) virus not beaten...biopsy last week - grade 1 stage 0 to 1. No more tx. wait for new meds. I am 49 and 1b. Tx has disabled me.
Saw doc today and asked him to be agressive on current problems which are extreme fatigue, mental fog, memory problems, concentration problems, some lightheadedness, extreme hip and leg pain, many body aches and neck problems, numbness and tingling in arms-hands-legs-feet, generalized weakness and shakiness, reduced dexterity, occaisional light chest pain w/labored breathing, ringing ears and some weird vision things which come and go.
I have recently tried as hard as I can to regain lost mental and physical ability. If I can get better, I have a job to go to.
the conclusion from all my friends arethat I cannot work!! Today my doc has concluded the same thing! This is difficult to accept as I did not have these problems prior to tx. I feel like people think that I am milking for disability especially with the latest biopsy results!
My doc has labeled me w/CFS and started with some hip xrays today. He has warned me that we never be able to actually label some of these problems and they may simply be "a result of tx especially the mental issues".
Please let me know if anyone has any ideas on what some of this may be. Thanks for letting me vent. By the way I am 10 months post tx.
Michael

[cuteus]

there are no closed threads, don't worry

[DoubleDose]

Chevy:  I have been doing better lately overall.  Now at about 18 months post-tx, I am beginning to see some light at the end of the tunnel.  My spinal, neck and back pains are less frequent and less severe...seem to be fading..I hope.  My energy level waxes and wanes.  Some days/weeks I feel like a wild man, and work, play and exercise like it's going out of style, with little fatigue or depression.  Other weeks I feel anxiety, fatigue, and recurrence of various pains, dizziness, and depression.  There are now two of me, fighting to see which prevails.  I think the upbeat, energetic one is pulling ahead, and maybe this is a sign of the 'interferon hangover' slowly letting go of it's grip.  I truly hope this is the case.
There is still frequently that feeling of just not being quite 'right', whether it's boredom, clouded thinking, tiredness, anxiety, etc. that comes to the forefront and reminds one of the old HCV feelings.  I am not at all sure that ALL the virus is ALL THE WAY gone from the various reaches and compartments in the body....and I really think the best researchers are still feeling their way along on this issue.  
I often think that the 'blood/liver' virus distinction is really a misleading label for HCV, and that it really is much more.  The only reason it got the 'blood/liver' sticker attached is that the liver was the one organ affected by HCV that could fairly easily kill you.  Since the liver effects were very obvious, and life threatening, it then became a 'liver virus'!
Very little study has gone into the effects on various other organs and systems, or into other possible modes of INFECTION!  If it also transmits through other tissues outside the blood/liver, then maybe it can remain compartmentalized, AND undetected by BLOOD testing in many people.  Maybe only one form of HCV is the well known 'blood/liver' virus.  Might HCV not also be responsible for many CFS and Fibromyalgia cases, by infecting nerve tissues, connective tissue, the brain, etc, without being in the blood????  That is my concern!  I hope you are doing well!!!  Keep in touch.  I am less frequent on the boards lately!  Feeling more FREE!

Micro,  See above comments re:  CFS and Fibro.  Maybe the HCV is doing 'OTHER THINGS" to your system, and focusing less on your liver.  This is why I think it is a 'systemwide' infection...not just blood/liver.  Maybe spinal, CNS, brain, lymphatic...etc!!!  We will see in coming years!  Best wishes...DON'T GIVE UP!!!!!

DoubleDose

[twotells]

I am also disabled due to HCV and the treatment.  I have peripheral nerve damage due to Cryoglobulinemia which became dramatically worse following the start of Pegasys and Ribavirin (a rare occurance since most people with cryo get better, not worse, from HCV combo tx).  

Some of your symptoms sound like Peripheral Neuropathy (eg. the numbness and tingling in hands and feet, leg pain).  Have you been checked for Cryo.  The test is called a Cryocrit.  Four things can be effected by cryoglobulinemia: skin (purpura), nerves, joints and kidney.  My skin and kidney weren't effected.

Fortunatly for me, I was clear of the virus (3 mo PCR) after 96 wks of Peg.

Hope you get some answers,  Dave

[Soleus]

It is strange that a virus that is so hard to contract is spreading so fast. I personally believe it was the late 70’s early 80’s cocaine explosion that accounts for the increased rate of infection were seeing now. I can remember (Partially) hundreds of bars and parties were cocaine was being consumed in large quantities. You could never get into the bathroom because it was packed with people doling out bumps. Sticking the same key, spoon or straw up dozens of bloody noses had to be a significant mode of transmission.

[new-sojourn]

I don't think so about the cocaine thing.  Very few people on this board think that's the way they got hep c.

Personally, i'm surprised @ the # of shooters from the post aids yrs.

As to brain fog, doesn't bother me, b/I'll toke on it for a while and get back to you all.  if I remember where my stash is....must be the hep c!

[couchpotato]

I totally agree with the cocaine thing being a mode of transmission, it's so obvious. Years and years ago, when I partook in such things, we always shared a straw, rolled up bill, whatever was handy. Hey, we never knew any better....and did we care at that point?

[Honey15637]

Yes,,,definitely cocaine must be one of the ways that hep c was passed.  Like Couch said,,,whoever thought about catching a disease this way. I think that this disease originated from Viet Nam and when brought back to the states,,,was passed like crazy.  Just my thoughts on where it all started...

[DoubleDose]

I also have suffered from many 'allergies', IBS, eye, throat, and chronic sinus problems, ever since my early days with HCV, thirty years ago, and now even after SVR.  I have often suspected over the past ten years that the allergies, stomach problems, and constant sinus, throat clearing, and congestion related problems all were due either to direct HCV infection within those tissues, or the cellular immune response to the HCV virus in those tissues.

I still think that HCV directly affects many other tissue/organ systems, and may or may not be entirely wiped out from those areas upon long term SVR.  I continue to experience the allergies, sinus, eye, and throat problems that I had pre-tx, only slightly less severe.  Maybe the cellular immune response still remains, even though the virus may be gone from those areas, (and I stress MAY be gone).

I also am very concerned that my close family members have also developed these same exact chronic problems over the years, yet test negative for HCV upon blood antibody testing.  My fears and suspicions are that MAYBE the virus has transmitted to the obviously 'easy organs' from casual contact: salivary, eye, mucous membranes, etc....thus setting up a mini-infection, or a compartmentalized infection which generates all the familiar allergy, throat, sinus, eye, and related issues.  

Does anyone else observe any of this in their close relations or partners???????  It sure is strange how the same symptoms now are showing up within my family.........

DoubleDose

[Imagine]

DD, check this out www.hivandhepatitis.com/hep_c/hepc_news_cns.html

[Imagine]

DD, here's a more technical link that's interesting. My doctor indicated that I had this relationship goung on... http://www.priory.com/psych/hcv.htm

[scruffy]

In the Army back in 1969 we were given vacinations using airgun type vacinators. I believe this was a mode of transmission. Also we were required to give blood(strongly urged!) This blood then could have further spread the virus. This alone could account for thousands upon thousands of cases. I believe many many on this board contracted hcv through tainted blood recieved for medical reasons. frank

[MSBarbara]

Although I do not have Hep-C, I have an auto-immune disease (Multiple Sclerosis), and had experienced a similar situation when I was accidentally given a shot of Pegasys.  I think it crossed over into the blood-brain-barrier because that 1 shot of 180ml had lasting affects for months.  I hope this information helps you!

[md1johnson]

I was and still am some what expercing the brain fog,fatigue,could not hold on to things. The leg pain was unreal. The drs found my ammonia level was sky high,which happens with  liver problems sometimes. All I know is thats the  worst I have ever felt. Just a thought. God Bless MD1johnson aka nowheretoturn.