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Avatar universal

Just suggestions......

Hey guys,
     First of all in this thread I want you all to please know that what I am posting are just suggestions only.  I will soon begin tx on the night of Jan. 23rd, so please understand where my heart is on this, OK?  As a coinfected person with HIV, I already know a little of what you guys are going through in terms of sx's, i.e.  fatigue, anemia, low counts, nausea etc. etc., but over the years in dealing with this I have controled what I could and the rest, well...I just learn to adapt.  I have excercised more and have put on naturally muscle mass and have been able to keep my weight good.  So yes this new tx is and honestly has me on edge, but I just wanted to share my experiences with you guys only in hopes that something can help someone going through this with sx's because I AM there or have been there.  I guess the reason for this thread was after reading the post the other night about eating to survive....being able to eat whatever you just get down, I understand.  My heart, I guess, went out to all, but broke when I begin reading what complusive went through.  I just wanted to pass these ideas along to you guys in what I found.  No.  Not everyone will lose weight, but for all who had an excercise/fit lifestyle and have lost some muscle tone, you know how important trying to make sure that protien is apart of keeping and developing muscle.  I found at Wholefoods, tonight, 100% LIQUID PROTIEN....It has 480 grams of protien per bottle, and serves up 15 grams of protein per serving.  The great thing about it is it can be mixed with water or your favorite juice!
12 Responses
Avatar universal
So even if you can't get protein in your meals/foods, you might want to look at this and give it a try.  In having my blood drawn for the HIV every three months, and am and have been doing quite well with them....UND as always.  It never ceases to amaze my Dr in looking at my counts to find that my absolute neutrophils have always been close to the high end rather than the low, and I told him that for the longest I had been taking Shark Liver Oil capsules.  It can assist with the WBC.  Of course I realize that this can all change for me once I begin tx, but once again, as stated just a suggestion.  He even told me that I could continue to take them while on this tx.  Just some other suggestions of things that I take are:

-Centrum Silver Multivitamin ( No iron )
-Shark liver oil
-All of the green foods in powder form ( can be mixed once again with your favorite juice or water.)  This helps to keep your body alkaline rather than acidic, which is what your body needs to be.  Check it out online about acidic/alakaline or PH balance of the body.
-Moducare- This products has kept my fighting T-cells WAY UP HIGH in the 700-900 range.  It restores and balances the immune system.  
- Vitamin B-12

If you are experinecing the metallic taste in your mouth from the meds, you might try sucking on things that are tart like lemon drops...even try peppermint.  Also don't eat your food with your regular forks and spoons.  Use plastic instead.  Just throw them away when you done!! :)  Nausea still experience every now and then, but I am able to get soup down on those days.  One of the best is Lentil soup....again high in protein and one of the best to help with your immune system as well.  HIV+ I know how important keeping a good, fighting immune system going.  Again guys please understand these are something that maybe can help you (us) through this....that's all.  My heart on these things are in the right place, and I just wanted to help...that's all.  I hope that some of my experiences in already fighting will help you guys already.  My Dr has given me the yes nod that I can keep doing these supplements and things once I begin tx.  I hope this helps....

In Him,
Rick
Avatar universal
Hey - thank you.  You are just so sweet!!!

  I AM gonna try the liquid protein stuff (I just put it on the list for my weekly food shopping "enduro" tomorrow.  Also - I've never heard of the green foods in powder form - what a great idea.  The shark oil is something I do every day - but WHAT exactly IS Moducare?  Love the other ideas as well - especially - the plastic utensils - GREAT idea.  

I saw the ENT Dr. today - he took a peek with a tube (yuck nose) and swabs and stuff today and he said probably NOT any reflux or GERD (thank goodness) but - he gave me a sea sickness braclet.  It's weird - but the constant rolling tummy and vertigo seem better.  Wonder if it's the power of suggestion or - could this thing actually WORK?  *smile* don't care as I DO feel better.  I got weighed and I am holding my own at 103.  WHEW!  I get to check back in with my Doc. next week - he will go over the ENT's findings with me and also see if I need to go on meds for the anorexia or not.  I hope not.  Ent said he doubted I'd developed GERD in between start of tx and now - but sceduled the endoscopy (I think that's what?) to look for "trouble".  I'm hoping he finds none!!!

AND RICK - WOW - getting ready to start?  yeah - that's stressfull.  I hope you will have "light" or even "no" sides...  You are such a trooper - you are due for a bit of "good luck".

Thanks sooo much.
Avatar universal
So far the ENT's verdict seems to be that the ear and sinus infections are adding to the taste distortion, which combo is causing nausea and vertigo, and you get unable to eat, vomiting, and weight loss.  The infections are "more likely than not" the same stuff I've been dealing with all along - a by product of the never ending cycle of infection I've had for two years now - only now caused by "on the low side" blood counts.

BUT more than likely this infection stuff will stop soon after my blood counts go back up (after tx is over).  AHHH SOOOO  a light at the end of the tunnel finally.
146021 tn?1237208487
THANKS FOR SHARING WITH EVERYONE! I DIDN'T KNOW YOU WERE SO SMART ABOUT DIET! NOT ONE OF MY STRONG POINTS! SUPPLEMENTS=MONEY AND I HAVE THE 2 KIDS IN COLLEGE. ALSO SUPPLEMENTS=DEDICATION AND I'M JUST TO LAZY
IN HIM AND KEEP LOOKING UP!
JANICE
Avatar universal
*laughing* When I got to the ENT's office my Doc's Nurse had faxed this "exercise instruction sheet" to them for me - "chair exercise" to help with muscle tone.  You sit in a straight backed chair and do them.  Considering what I used to do for exercise - I didn't know whether to laugh or cry when I saw what it was.  I am going to do them as I will ANYTHING that can help me stay more fit.

I can post them if anybody needs them..


Avatar universal
Comp: Considering what I used to do for exercise - I didn't know whether to laugh or cry when I saw what it was.
--------------------------------------------------
Maybe you could put some wheels on the chair and do a wheelie?
Avatar universal
No, stay with the bracelet that the ENT gave you. I am probably next in line to get it since I am a flight attenant.   I have heard rave reviews about this thing.  So glad that these ideas are something that you might try.  I understand your situation, and since I have already experinced some of these things with HIV meds, when I read your post as well as others, I wished that I could have taken some of your pain since I already know how to deal!!!!  All of you, as always, are in my daily prayers.  As most of you know a healthly immune system is vital when combating anything!  Please do yourself a favor and go online to check out MODUCARE.  It helps to balance the immune system and has kept my t-cells high.  Just be sure to pass it by your Dr before adding this or anything to your tx, OK?  I hope that you're feeling better, and please you or anyone if there is anything that I can find out about or help with then please don't hesitate to ask me.  I bought the bands that one would work out with from a catalog.  This is just in case I need to just do a lite workout at home to at least help with muscle tone.  Take care of yourself....I wish you the best......

In Him,
Rick
Avatar universal
THAT got me giggling.... hmm, wheels, a motor, and a ramp - so maybe I can do a "jump" over the cat....work my way up to a grand jump over cat, cofee table, landing in the kitchen for a smoothie...
86075 tn?1238118691
hi, really good post...I saw that you were taking Moducare, along with powdered green juices (something I've done for a long time) You know I bought that stuff and then never took it, I might look it up now, what are your thoughts on it? Do you really think it hels? thanks, and good luck...I have a co-infected friend that just started, and he's hanging in there okay...
Avatar universal
Hello my friend,
      Since waking up to a life that I didn't recognize anymore in 1996, I decided that many things were GOING to change and all for the good.  I have so much of life ahead of me that I want to live that I started immediately doing, talking, researching, to turn things around for me.  This tx is new for me, and yes the uncertainty of it realistically puts me on edge, but for me, right now, am healthly. good shape, great biopsy report of mild fibrosis, and high T-Cells that I have chosen that this is the right time for me to begin.  Also und with the HIV.  It is so important that your friend keeps the HIV under control and I am assuming in your post that is what your friend is dealing with.   In regards to your question about the GREENS, I researched that our bodies have a PH balance to them.  The more acidic a body is the more prone to diseases and such, however, the more, or the right balance of alkaline a body is the better the immune system to fight with.  Diseases thrive/live in an acidic state, more so, than an alkaline balanced one.  Do alkaline bodies then get this world's diseases?  That I don't know.  But does a healthier immune system help us to ward off alot?  I believe so.  With the world of information at your fingertips, google PH balance in the body and read.  I read more about MODUCARE ( and found out that many of my friends were taken this as well ) in helping to balance the body's immune system.  In my post I mentioned that I believe it has help to keep my T-CELLS in the range of 700-900 as oppose to just a 200 count in '96.   Do I believe in modern medicines helping us?  Absolutely.  But I also am a firm believer that what we do to contribute in being as vigilant as possible in taking the right things such as herbs to help an impaired immune system is imperative as well.  As with all things, one needs to run everything by their Dr's before beginning or adding this to any tx.  My Doc told me to keep doing the things that I was doing, and that everything that I was taking as far as the supplements would be fine.  www.MODUCARE.com is a great place to start.  Lastly, would your friend be interested in talking on this forum with me about where their are in tx?   Or I could leave my email address if that would be a better and more comfortable place to converse....Would love to meet others like myself and share helpful tips or insights.  Take Care.....May God bless you and yours.

In Him,
Rick
86075 tn?1238118691
hi! youre preaching to the converted over here! ha ha! yes, I, like you, have been doing enormous amounts of research on alkaline/acidic balances in body, and try my best to eat alkaline producing foods, etc...I could use a little more dicipline, but I do "relatively" welll...what is the green powder you use? that's one of the easiest ways I know to keep an alkaline balance...how often do you take it? and how?

also, my friend Henley is the guy who is co-infected (he's also 63 years old) he's one of the first people in the world to take the combo drugs for HIV, and I remember way back then, he was down to his last t cells, along with a lot of friends I had back then, they came out with the cocktail drugs here in LA in the very beginning...that kind of gives me hope about HCV as well...cause I had all these friends with HIV and people just wrote them off as being dead already, that there was no hope for them....this is kind of darkly funny, but my friend Henley was kind of on the wealthy side, and he went on a binge spending spree cause he thought he was going to die soon...then they came out with the cocktail drug protease inhibitors, and it's what, 15 years later? and he's alive and kicking...

he went through most of his money back then thinking he was destined to die soon...which is a great object lesson for me, never give up hope! Or it might come back and bite you in the a$$!!ha ha! Anyway, I'll ask him to type you some stuff, but he's not really an email type person...if you have any questions, I'll be sure to ask him...be well and good luck to you, your great attitude shines through your posts!
Avatar universal
Hello my friend,
     The Greens that I used is from Wholefood Market.  It is called GREENS+.  The one I use in particular is the one that has a new flavor of Wild Berry Burst written on the front.  It runs about 27.00.  You use three tblspoons of this in either water or juice.  I use it in my orange juice...tried it in water....and well just not as tasty.  I use it sometimes twice a day.  Once in the AM and once of course in the PM.  It doesn't look that great when mixed, but it is not bad once you start drinking it.  I'm sure you'll find you way into what you want to mix it with.  I found that the people who work in the vitamin section of Whole Foods, at least here, are exceptionally knowledgable.  I also like to mix it up and get a different brand every other month, because each one will carry for the most part the same, but I found one that will have Astralagus in it which is extremely GREAT for the immune system.  So I will get that one...you'll find your way.  After doing your own research, don't be afraid to ask the people at Whole Foods or wherever you go about GREENS, just to see if your research and their's pretty much coincide.  Take care and may God bless you and yours.......

In Him,
Rick
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