MyOwn

[CIRQDUSOLIEL]

MO,
      Good morning, friend.  Well I knew that I would have lotsa' questions for you concerning the future and retreatment, I hope that you don't mind.  You may have already told me, but the ol' mind of mine isn't what it use to be.  Anyway I finally got an appt on March 5th with a Gastro.  Can he do the scope to see if I have parasites?  Or is there a "para" Dr specifically?  I am going to pursue this angle after reading more threads on this.........do you think that I should go get the test done first for parasites or just possibly go ahead and present scripts to the pharmacy for filling by my treating Dr(s).  Should I get all three written on one script or present the pharmacy with three individual ones?  Am calling today to find out if United has mailorder or not......I'm getting excited for you if you know what I mean........until then take care sister.......

Together in Christ,
R

[ladybug52]

Oh my goodness! Is it just me, or have you gotten smarter since tx? I thought you were prepared the first time around, but you are really amazing me with your strategies this time!
What a wonderful post! Yes, yes, yes, this was a good read! You are absolutely right! Amen to all you said!
Hugs,
Bug

[Mikkimoe]

Yep I get my stress dose everynight - it's a great place to pass the time when you can't sleep. I am probably learning too much...but not enough about the critters. Most of the sites I am pulling up are all adds for some magic potion.

I'm just looking for a doc in Orange County...maybe my google skills are declining as my Viral and critter load go up.

It is funny but all the symptoms i have are the ones listed on the parasite sites (IBS, fatigue, swollen joints, abdominal pain etc)

[sfbaygirl]

SNL, isn't that Saturday Night Live??? LOL  Hey, Wassup, not everyone has big problems on tx. I did, but we do have at least a 50% chance. With Alinia in the mix I would put it a lot higher than that.  

Sorry for all the creepy crawler stuff, but it could be relevant....I dunno?  

Don't worry about sx until after you start tx. It really isn't worth it. I had more after tx than on tx. Before I started tx I hated the waiting the most. That was the hardest part of tx. Once I decided to tx, I just couldn't wait to get those drugs and start!  If you have decided, just do it!  As my dad always said.  Don't worry about creepy crawlers or anything else. Get some alinia, some oxymatrine and a 4 week PCR. Then you are set!  Good luck!

Linda

[ladywhy]

No doubt this forum can cause stress and be overwhelming at times. (and also addictive!) I too am a 1A. You do what you can and leave the rest. The other side of the coin is that there is abundant info here and great support...I don't know if I could do this without friends here....I don't believe I could. It's such a blessing that others understand. Remember, Wassup...not everyone has difficult sx....some people have smooth sailing throughout. So keep doin' what your doin'..praying, funny movies and such. You're gonna do ok.
y

ps: SVR (probly a typo..) or is it SNL?

[Wassup]

Hi Ladies,

Although I'm really grateful for the info. Re: Parasites, It does leave me feeling a bit creepy crawly.  I've spent the whole day here; reading up on new drugs, tx, and writing a few replys.  All the info. has left me a bit mind boggled.  Now, I'm not just dreading the Sx of Tx, but the possibility of developing, MS, etc. etc. I'm worried that if my GT 1a HCV, is "hardest to treat",  I might be a non-responder, may never see a SVL.  So far, the worst part, (aside from the Dx), is the waiting.  I've read, in more places than one, that "early tx is essential,(key to sucessful tx)" etc. etc. I'm not being paranoid, (o.k., maybe a little). I am trying to stay in good mental and spiritual health, since I feel helpless in my physical health.  I pray, watch funny movies, and many other healthy activities.  I'm just feeling antsy.  (Not Aunt B,    Ant c).  :/

[sfbaygirl]

Yeah, if I went to Libya and had a transfusion, I would be concerned!  I remember being in Morroco in a chorea outbreak and having that airgun shot into my arm before I could leave the country. Do you know how many that airgun touched?  I have no idea...but I certainly consider this test myself...dunno if there are any parasite Dr's in my area. I guess I will check!  

Linda

[Mikkimoe]

Gee- like I don't have enough worries - now you all go and though critters into the pot.
I always tell my hubby that it feels like an alien is in my tummy -  it's doing it right now!
I spent half my life in 3rd word countries inluding Libya (where I got my transfusin) and have never had a criter check...seriousy should I schedule doc #9. Thank god for PPO's.

UGH!

Mkkimoe

[sfbaygirl]

Hey, no worries...I am a crazeeeeeee girl myself!  LOL  

[Myown]

What do you mean TODAY?  You are always crazeeeee girl!  LOL
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Gee I hear that alot! LOL

[sfbaygirl]

What do you mean TODAY?  You are always crazeeeee girl!  LOL   I have had like 5 scopes this year, or last actually...you would think they would have looked then!  

[Myown]

I did have an infectious disease dr in the hospital, one of the nine!  Maybe he could check this out?  
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I would only go to a Parasitetologist. Anyone else will most likely only do a stool test and that will not be accurate cause as I mentioned my stool test that my hep doc ordered was negative and it was within a day or so of the test that the para doc did.

If you google Parasiteologists in California or something like that, you should find someone and call and say you want a scope......here's what you can say,,,,,Hello, my name is SFBgirl and my friend Myown from the east coast had a scope done and they found 'critters,',,,,,,I want to know if I have critters too.....please put me in the appointment book for a critter exam....LOL....

I'm in a crazeeee mood today. Too much coffeeeeee,,

[sfbaygirl]

Geez, I didn't realize the stool sample wasn't enough!  They found H Pylori and then didn't, but this was from the idiot GI I used to have (the one who said I was UND and I wasn't)  Interesting!  Maybe I should check it out. I did have an infectious disease dr in the hospital, one of the nine!  Maybe he could check this out?  

Okay, it is your opinion that it could cause relapse, but it makes sense if you think that something else in your system is taking your immune system....dunno

[Myown]

Your welcome guys.

I would hope that anyone would share their personal experience as I did so that they can make choices if they too would want to look into things. Afterall we cannot rely on doctors alone. I go to a leading hepatologist and he didn't see the need to test and said what I saw was normal and the "stool test" he sent me for was negative - when if fact I did have parasites. So in more ways than one my experience has helped. It showed a hepatologist that those lab test done by 'techs' are not the way to go. My test didn't get handed off to a 'tech,' but instead a Dr. who has specialized in Tropical Medicine and Hepatology for many years did the entire test.

Now remember, the RELAPSE/parasite connection, as I have mentioned at other times - that is NOT what any doctor has said, but it is just a theory or mine, which after I read about the MS study, led me to believe I may be right, but still and all, it is just an opinion of mine and I know "you guys"realize that. I have been very clear to those who know how to read at least, that doctors are not telling me this. It is just my opinion that I share with the doctors hoping to plant 'seed for thought,' because they are the ones with the knowledge and expertise to look deeper - not me of course.

Rick, I emailed you with more info.

MO

[CIRQDUSOLIEL]

     I think a lot of times I get so worked up when I saw on T.V. an advertisement for Viagra now being sung to some hit song from the late 80's possibly earlier 90's, and I began thinking, " WOW.....how sad!", I might as well throw in that Enzyte commercial showing some guy with a constant smile on his face......how funny! Whether it's FDA approved or not, considered an herb or whatever, society/media/government seems to be looking at things backwards.    Anyway enough said about those examples.........that's the great thing about our awesome country is that we have the gracious, wonderful freedom to share our beliefs, opinions, knowledge, life's experiences', with each other.

      Like Y said, many thanks to MO for stepping up to the plate with such an experience......should be something to think about, and yes, Y, well said about because the drugs of HCV treatment not even strong enough to kill even parasites possibly being the cause of relaspe.

      Also letting you guys know that Romark is doing trial studies for relaspers and non-responders of SOC with this new Alinia drug.  Their number is 813-282-8544 ask for Heidi at either ext. 246 or Anthony Shane Jackson at ext. 245.  They called me back today but I missed their call and will be calling them back this afternoon.


In Him,
R

    

[sfbaygirl]

I agree with all you said about parasites. Could it have helped cause relapse? a good question. If your intent is to get Alinia to go along with SOC (I would!) I think you will need more Alinia and a Dr. that will rx it to you. Apparently they only give a few days of Alinia for parasites.  I too would like to know if I have them, Rick, so I would sure test for them. What can it hurt? Now I wonder if had cyro and that contributed to a relapse. My Dr. thinks I had it looking at my legs....interesting!  So checking everything out with tests is a good idea. Who wants a relapse b/c of some other affliction?  I think you are smart to test these things.  

Linda

[ladywhy]

R: Wow, you have the right attitude...and what you said about ins. co.'s and pharm. co.'s is on the money and very sad. Thanks for the forward. I haven't been writing lately, but you are gonna get one soon. I think of you often and you remain in my prayers.

The question for me is? I also would think these drugs would kill parasites, protozoa's whatever...but obviously it doesn't. MO txed and still had them, why? Could it have something to do with her relapse? hmmm...possibly??
If she wasn't so persistant and determined and willing to pay outta her own pocket to see a world reknowned Parasitologist she/we would not know the info. that he gave her. The only reason for her to bring this subject up was to give us what could be pertinent info. and I do appreciate the info. Thanks MO
Due to globalization (it's a small world) there are many parasites that are common in 3rd world countries, that are now here...and our bodies don't have the capability to get rid of 'em....and the dr.'s have little or no training in this field. It's a conumdrum.....
but Alenia is lookin' very hopeful for us relapsers, slow responders and such....
I contacted Romark yesterday.............

Every knee shall bow...every tongue confess, Jesus Christ is Lord
y

[Lady Lauri]

Do I agree with all you said on the BS with drugs and 'who's the real drugs pushers'...yes!

So if I'm understanding your intent (per parasites) your goal in that is to get the Alinia?
(I also think it's a good addition to tx, BTW.) If so, understand that!

I do think, until myown gets on here and see's this to answer, that even when prescribed for parasites, it's a short term dosing.

........... I think it's always about positioning oneself in the best possible place/light........laying out all options.........looking at everything.......and THEN making a decision.......................

Absolutely! Each one must make their own choices on their own situation, disease status, life's, tx. One size does not fit all. That's what I have done all along, and made changes, choices for MY situation and would never recommend to others because it was MY situation.

Good Luck to you in all the choices ahead.

God Bless :}       LL

[Myown]

I think it's always about positioning oneself in the best possible place/light........laying out all options.........looking at everything.......and THEN making a decision
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Yes, absolutley.


I'll email you with all the info. Yes I would def go to a Para doc. The GI docs aren't knowledgeable enough about parasites. My own PCP wouldn't even listen to me and just kept saying "we all have parasites, and all sorts of viruses in our body." I said I know, but when a person has a compromised immune system such as HEPc or HIV there can be overgrowth instead of them just passing thru. By the way Rick, the kind I had 'single cell protazoa,' can come from tap water -chlorine does not kill it, bottled water that has laid on a shelf too long can also cause it.FYI, I had read something recently that folks with HIV should never drink from the tap at all. I have a water filter, but I then take that water and boil it in a kettle and put in in glass jars and then in the fridge - so I highly doubt I got it from that. The para doc says most likely from a food handler not washing their hands - yuk, but you Rick ,in particular, fly all over and come into contact one on one with people. Someone from forum told me her sister was a flight attendant and when they picked up some people from this one country they had to be shown how to use the toliet - they had no idea how to use a toilet!!! So imagine people like this then getting hired in restaurants here in America - do we really think they will know enough to wash their hands each and every time? Or that their boss will keep their eye on them.Scary. Well basically this is a big problem according to my para doc.Btw, sometimes people won't have any symptoms at all, so its best to get checked.

But anyhow Rick, the virus has been shown to replicate in the intestines, so it is MY opinion that if the intestines are filled with mucous -abnormal amounts -and parasites, it may be very condusive to viral replication. That's just MY opinion though.

And I did tell all my docs that I think the parasites would cause an immune response. Then later on, I found a study where 12 MS patients had parasites and 12 didn't, the ones that had the parasites went into remission and the ones that didn't have the parasites didn't go into remission. I brought the study to my doctors to show them that my theory might not be that far off base. That if parasites can cause someone to go into remission with one disease (MS) then maybe parasites can cause someone to relapse.
(So this Brazilian MS study shows how the immune system/response can be effected by parasites. you can google and read alot about that- very interesting and I thank God that He gave me the wisdom to even think of thinking something like this could be possible. I would never of on my own thought to google "parasites and immune response".)

None of the docs can say I am right and I don't know either, but gave them good food for thought and they did listen. Believe it or not there are going to be parasites used in studies with other diseases now too. No thanks! lol But true - they are thinking about it - scientists- that is.

SVR'ing has many factors I believe,and not saying everyone that failed tx has parasites, not saying that at all - could be hormones, or just immune system of that person or who knows what, but doctors need to start looking at the body in its entirety before just putting people back on the tx train.

I'll email you with some more info as far as scripts. I had posted it somewhere - but I forget where, so I'll email you.
MO

[CIRQDUSOLIEL]

      I think it's always about positioning oneself in the best possible place/light........laying out all options.........looking at everything.......and THEN making a decision.  Am I a relapser?  Yes.  Do I have animals?  Yes.  As a flight attendant exposed to the likes of inconsiderate travalers who travel with drug resistant staff infections called MRSA and tuberculosis so I want to be dealing with something else?  No.   Being Coinfected with HIV, and IF I'm going to have to deal in this life with a disease then would I rather be just dealing with just one instead of two?  Yes.  Have studies shown great promise with Alinia?  Yes.  Does one want to try everything out there that is approved and on pharmecuetical shelves already?  Yes. At the end of day, the end of your life, whatever we feel comfortable in calling it, we should ask the question, " Have we done our best?  Have we given it our all?"  If the answer is Yes, then one can rest.........FOR ME, I cannot and do not and will not speak for anyone, I again will place myself, and do for myself the best possible options out there.

     Although MO and like everyone else situation is different/norm, again if getting Alinia thrown into this mix of drugs is and has shown great promise ( according to thread's posted on this side of the forum under I believe " Alinia" and my understanding of the what I've read ) then sign me up.........It kills me that the FDA/government wants to promote the idea that illegal drugs are bad, addictive and will kill, but will allow the drug companies to place drugs out there only to be recalled..........yes, we've all heard of the warnings on the commercials, ".............could cause this........could cause that.......", but will approve drugs out there to the market again only to be recalled.  Insurance companies will johnny on the spot approve viagra to just about anyone for any reason, medical or not but make us jump through hoops to get promising drugs out there to try/use.  Insurance companies will approve a liver transplant but won't extend HCV treatments past 48 weeks or longer..........is it just me or have I missed something here??????
  
      
     IMO, again IMO only, I think we have to ask ourselves what wrong with this picture?  Who is,  for lack of better terms that I can think of right now, is the biggest drug pushers?  Same horse just a different color, folks......Anyway for me and my situation, as everyone's is different I know, am I willing to try anything?  My answer resoundingly is ABSOLUTELY!!!!!  I think and believe we have a constitutional right to defend our life.   So for me there are more YES's, than there are more NO's..............Sorry that I've veered off the thought here, but again I'm just concerned, confused, and will keep on fighting until I know that enough is enough, I've stayed the course, run the race........Until then guys stay safe and blessed.............

In Him,
R

[Lady Lauri]

Personally, I amazed these drugs wouldn't kill ANY parasites or worms in us!!

Agree with NYgirl, do you have symptons of this? I think Myown's case was not the norm, but if you feel you'd want tested, can't hurt either way I guess.

Good Luck, LL

[nygirl7]

Rick what makes you think you have parasites to begin with?  I've never heard of any doctor ever believing that this would have anything to do with failing treatment - it just doesn't make any sense at all...it's not like they eat the ribavirin or something...I'm very confused.  Or is it you just want to add Alinia into the mix?