POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: AndyArrow on January 18, 2009, 05:54:15 am
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First, I go for the big weigh-in and the doctor is SO happy. I'm up to 193lbs ... I've gained six pounds since my last visit. After being at 79lbs because of problems with med failure and a messed up esophagus my docs are all happy when the scale goes higher. Being 6'3, 193lbs isn't horrible, but I've been going to the Y and trying to eat healthy to lose a pound or two so this wasn't exactly what I wanted to hear. OK so, I guess I just have to workout a little harder.
Then he looks at the results from my labs. On my previous visit my CD4 was 205 and I was thrilled to back above the 200 mark after a long struggle. Now, I'm back down to 147 Tcells. I had to have an esophageal dilation just two days before my blood work so my ID doc wasn't too concerned since I was still undetectable and my percentage was roughly the same. Still 200 has such a big psychological effect being below it again was a big disappointment.
Since Lyrica wasn't doing anything for my PN he decided to give Neurontin another try but with a higher dosage with the comment that for some people nothing really helps. To be honest he could have kept that little gem of knowledge to himself and I would have been quite happy.
Now my GI doc wants me to take a SIBO (Small Intestinal Bacterial Overgrowth) Breath Test. They think I have bacterial dysbiosis. His office FedEx ed this kit to me that is rather involved.
Now the day before the test I can't eat foods high in fiber or slowly digesting foods. It advises to avoid bran, course breads, nuts, beans and starches except for rice.
The day of the test I can't sleep or exercise a 1/2 hour before or anytime during the test. I must not eat for 12hrs before the test. I'll drink some lactulose powder mixed with water then for the next 3hrs at 20 minute intervals I'll be breathing into a bag that has a connection to hook-up test tubes to collect breath samples. Afterwards, I just drop the kit off at the post office and wait for the results. I guess it's better than having them take more blood.
I know I shouldn't bitch and moan since I'm in pretty good health and so many people have it so much worse than I do but I just needed to vent, so thanks for letting me rant.
Hugs & Stuff
AA
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Andy, that test sounds horrible. I mean not visually wise, but everything you have to do for it. I'm sure that, along with the other couple things (CD4's and pn news) is troubling.
Your CD4's will probably go back up. I know it sucks to have them drop, but consider the circumstances. And as for the pn, what dose Neurontin is the doc putting you on this time? I think you know I take 2400 mgs a day, and it helps. Of course, I realize this isn't going to help everyone. I do hope you find some relief.
Hey, at least our weather got above -0F. :-*
Luv,
Betty
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Hey Andy,
Sorry the CD4s dropped a bit, but the percentage is still OK and your viral load is undetectable, so, while disappointing, at least the bottom didn't fall out.
That test you have to do sounds dreadful. I hope it comes out OK.
I'll be sending positive energy your way.
HUGS,
Mark
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Hey Andy,
Sorry about the bum visit. Don't let it knock you down too far. You've come a long way and have been doing so well. At 6' 3" you are probably carrying any weight gain gracefully.
It seems that PN issues are becoming the norm for this year. Hopefully the increased Neurontin will help. I take it too.
Good luck on the SIBO test results.
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Thanks everyone for the kind words of encouragement.
I'm still shoveling out BT but you are right it's better than that -15below we had. I used to be on 300mg 3x a day and he has me starting back with 400mg 3x a day. I don't think he has many other patients on it so he seem hesitant to start any higher. If I'm not feeling any relief I'm gonna have to let him know that much higher doses aren't uncommon.
I will take the test in the morning and let everyone know how it goes but I probably won't know the results for several days.
Hugs & Stuff,
AA
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Time for an update.
I got the call from the doctors office and according to the breath test I do have a bacterial overgrowth in my small intestine. Not the greatest news but it does explain the rather nasty flatulence problem I've been having lately. >:(
The doctor (well actually is office manager, who I've met and is a sweet lady) tells me I need to take this special antibiotic that I've never heard of (Xifaxan). It somehow doesn't break down like other antibiotics so it is only good for treating the intestine. The prescription is for 200mg 3x a day for 10 days. They had a few samples so I've got enough for 3 days and will only need to fill the prescription for 7 days. I start calling around and the cheapest I can find it is for about $199.00 at Target. :o On the plus side my doctors office sent along a rebate from the drug manufacturer so I will eventually get $75 back.
Also, they recommend taking Align (or some other probiotic) and eating yogurt which I do a couple of times a week but I guess I'll start eating it daily. The other thing I find out is that the Xifaxan will treat the bacterial overgrowth but the underlying disease usually has no effective treatment (assuming they can determine what the cause of the SIBO). Often people are required to undergo repeated courses of this antibiotic or even continual use. :( Still, besides the cost its an easy fix (please keep the knives & scalpels away) so I'm greatful.
I guess the point of all this is that if you are having serious GI problems it might be worth checking with your doctor about the SIBO breath test. It's also known as a hydrogen breath test or a SBBO (small bowel bacterial overgrowth).
Hugs & Stuff
AA
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Wow, Andy. I'm glad they caught that. So, Medicare Part D won't cover that antibiotic?
Anyway, glad you don't have to have surgery and all that other stuff. Hope you heal quickly.
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Thanks BT,
You've always got kind words for me.
Unfortunately, my part D won't go into effect until June since I was approved December of 07 and there is a 30 month waiting period (which makes not sense to me but that's our government in action). :(
I'll just keep popping these pills for the next 10 days and then hopefully, I'll be producing less gas than your average holstien cow. :D
AA
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Forgot to ask if anyone else knows of a good probiotic besides Align that might be cheaper.
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Forgot to ask if anyone else knows of a good probiotic besides Align that might be cheaper.
You may want to ask Miss Philicia. I believe he takes something of that nature.
Sorry about the wait on your Part D. I had no idea people were waiting that long. It sucks. >:(
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Andy , you may want to ask your local pharmacy about a product called " Pearls" it is not a prescription item and is widely used by international travellers to head off any "bug" they may not be used to having......My former company provided them as part of a "kit" for Foreign travellers
Nick
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Opps! that line about the prescription was wrong it should have read that I take 400mg 3x a day for 10 days.
Thanks BT & Nick for the tips
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So first I thought was this whole breath test thing I was taking was pretty weird. I mean I had never heard of detecting a bacterial problem with your breath and I was more than a little skeptical. Especially, since I wasn't have a problem with bad breath. Just a lot more belching than normal and horrific smelling farts.
Then when the doctors office called and said the test really did find something and to cure the symptoms I needed to take this one extra medication for 10days and I'd feel better. Well, here I am with 3 days of medication left to go and I can't believe it but it worked! I can actually be in an enclosed room and not have to worry about passing out do to methane exposure! :D Fortunately, taking norvir just as a booster to prezista I don't have diarrhea issue anymore (well, only occasionally) so I'm back to normal -- bathroom-wise.
Moving on the topic I need your help/input/suggestions on is that I have what appears to be a pimple in my eyelid. The head of which is actually in the eyelashes! >:( Has anyone else ever experienced anything like this?? Is it just a pimple or something more serious?? ??? Since my CD4 is still low I worry that its something horrible, at least for a few minutes until I decide it's nothing and it will go away (It's been a week now). Yes, I know I really should go see my doctor. I also know that diagnosing over the internet isn't the smartest way to go, however unless I want to pay the full cost of a doctor visit (about $250) I need to wait until April.
So ... HELP ME OBI WAN KENOBI YOU'RE MY ONLY HOPE! :)
Thanks,
AA
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Andy, I just wanted to congratulate you on the clearing of the infection. I don't know what to say about the thing you think may be a pimple. Is it causing you problems? I don't even want to try and guess and you're right-diagnosing over the internet isn't the smartest thing to try to do. My rule of thumb anymore is, that unless it's causing me significant problems, I don't go to the dr. I'm not saying everyone should do that.
Anyway, congrats.
Luv,
Betty
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Hey Andy,
Does the pimple hurt or affect your blinking or vision?
If the above applies, I'm, afraid I would have to recommend the doctor.
It could also be an ingrown eyelash, which might eventually need to be looked at, but, if that is the case, probably isn't dangerous unless it becomes infected.
As you said, getting help over the internet is not the best way to go, but I understand your financial dilemma as well.
All I can say is I would follow Betty's advice and wait and see if it isn't causing any undue problems now.
HUGS,
Mark
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Thanks!
I wouldn't say it "hurts" more like a mild irritation.
So I'm gonna go with wait and see! 8) and I'll be sure to bore everyone with what happens.
Hugs all around!
AA
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So, hows it going? Is it still there?
I hate pimples and have the tendency to worry them until they get irritated.
'Doctor Katie' states that she sometimes gets them and that hers are an ingrown eye lashes. She pulls them out, states that it hurts like the dickens, but she gets it out.
But, then, she's always in the mirror with a pair of tweezers. ::)
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Andy
I also have a 'pimple' in my lower eyelid. It itched at first like eyelashes do that need to come out. So after pulling out quite a few, I was surprised it didn't stop itching. That was about 2 weeks ago. The itching has stopped but there is a bump there. It has not formed a pustule like a pimple might, and it's not red either. It seems to be getting smaller.
The only effect on my eye it has had is that eye seems to get tired sooner after reading a lot, and it occasionally pushes my contact out of wack.
I have a doctor appt in March. I'm going to mention it to him whether it's still there or not since the appt is for a physical, not ID.
Glad to hear your meds worked! It's so nice to actually get something fixed by medicine instead of just relieving the symptoms or slowing the progression.
rusty
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Still there ... but now its even grosser since unlike Rusty's it has become full of all that nasty goo. It's like 4 times the size of a normal pimple. Its got another couple of days before I take some kind of drastic measure! >:(
Rusty, I sure hope yours goes away quietly on it's own. I'm really happy with the effects of this anti-biotic.
AA