parasites and HIV

[Nestor]

I seem destined to serve as a test case for the interaction of HIV with various other bugs.  

In November of last year I had the following test results:  

VL: 15,000
CD4: 680
%: 24

This was a happy return to normalcy after a crisis brought on by contracting CMV for the first time in May.  That crisis had involved an astronomical VL and a percentage that was technically AIDS-defining, so I was extremely relieved to see things get back to normal.  Now I seem to have lived through a repeat performance of that drama, with intestinal parasites playing the role which CMV played then.  

At the end of December I left for a five-month backpacking trip in Thailand, Laos, and Vietnam.  On the fifth week of that tour I suddenly became ill with extreme diarrhea, red spots on my body, aches in various joints, extreme fatigue and other problems.  I went to the hospital in Vientiane and it turned out that I was infected with Blastocystis Hominis, the same parasite that Hoover wrote about here:  

I reluctantly took Tinidizole.  Things got better for a short time and in fact the joint pain and the red spots went away for good.  But in April the diarrhea took a dramatic turn for the worse.  This time I took Metronidizole and Ciprofloxacin.  I had hardly  taken any medicines at all before this episode, let alone antibiotics, and these turned out to be extremely harsh.  

They also did not get rid of the parasite.  

I refused to allow all of this to ruin my vacation, and in fact had a magnificent time.  Gradually I got used to my
symptoms and learned to live with them.  But it was clear that I had become a far weaker person than I had been before.  In February I had walked 25 kilometers in one day, with a forty-pound backpack on my back; in April a six-kilometer walk was enough to leave me exhausted!  

One good side was that, as with the CMV crisis a year earlier, illness proved to be the dieter's friend, and I lost
about twenty-five pounds over the course of the five months.  By May I was actually svelte for the first time in
my life.

At the end of May I returned to the United States.  The diarrhea actually got even worse in the first week, but then, ten days after my return, suddenly went away completely and has never returned.  The extreme fatigue continued for another month--throughout June I slept for around fourteen hours a day, but at the beginning to July reverted
to a normal lifestyle and normal health.  

At the beginning of June I was tested with the following results:  

VL: 210,000
CD4: 563
%: 23

This was not exactly a shock; I had not been expecting a four-month battle with parasites to have no effect on my HIV.  But it was a bit of a call to arms.  I threw myself into a fitness program, running every morning, lifting weights four times a week, doing yoga frequently, eating a fanatically healthy diet with lots of the allegedly anti-viral foods, and trying (unsuccessfully) to avoid stress.  

One thing I did that was not healthy, however, was not to eat enough.  As soon as the diarrhea went away, I began to gain weight again, and as I was pleased with my slim new shape I tried to eat ridiculously little in order not to lose it.  My doctor warned me to stop this; building my strength back was more important than staying slim, for the moment.  


At the beginning of July I was tested again with the following results:  

VL: 39,000
CD4: 530
%: 22

Good news and bad.  The VL is much lower than it had been a month before, but it is still quite high compared to my average.  The CD4 is not only quite low but is, depressingly, a new nadir, Ominous too is the apparently steady decline in CD4%.  

So the question is whether all of this represents a temporary reaction to the parasite crisis, or whether my HIV infection is beginning to enter the stage of decline.  

I will be tested again at the end of August, and my doctor has said that if things do not improve much as a result of those tests she will recommend my starting HAART.  In fact I am already scheduled to meet with someone to discuss treatment options.  But it will be a "mild" recommendation; remaining off meds for some time further would also be an acceptable option.  

A complication is the fact that I've still got blasto.  Tests have shown it and while the diarrhea has gone away, I do have some IBS-type symptoms that I had never experienced before.  The question is whether to try to annihilate it with yet more harsh anti-biotics or to live with it and hope it goes away.  Ongoing co-existence of HIV and this parasite could be a dangerous thing, as both have a tendency to cause nutrient deficiencies, among other things.  But when I think how ghastly I felt during that week of ciprofloxacin and metronidazole I am in no mood to contemplate further treatment--especially when I consider that they didn't even get rid of the bug.  

A week ago was my seventh anniversary of infection with HIV.  A week into my eighth year of living with this virus, I mostly feel good and am still optimistic.  But the middle of September, when I find out the results of the next set of tests, will be a time for decisions.  

[spacebarsux]

Hi Nestor, your CD4 %age seems to be in the same region since July'10. Maybe you could wait for another round of lab work?

Good luck

[Nestor]

Hi Nestor, your CD4 %age seems to be in the same region since July'10. Maybe you could wait for another round of lab work?

Good luck

Hi Spacebar,

I am definitely going to wait until the next round of lab work; even my doctor didn't suggest starting any earlier than that.  The plan is this: at the end of August, I will get blood drawn and, on the same day, meet with someone to discuss the various possible HAART regimens.  Then, in the middle of September, I will meet my doctor to find out the results of the August labs and further discuss the treatment options with her.  Whether that discussion is hypothetical and "for future reference" or will have direct reference to my immediate future will of course depend on the results of the blood tests.  

However, barring something extreme--like finding out I have only ten t-cells left--it is hard to think of any result that would cause me to begin treatment immediately.  Whether these numbers are a lingering after-effect of my long illness or the beginning of irreversible immune-system decline is something that I will want several months to determine.  

As for my percentage, if you look at all my percentages from 2006 until the very eve of the CMV episode last year and compare them to the percentages I have had since then, it becomes clear that in the past year my situation has been rather worse.  However, I have read that people with dormant CMV (if that is the right word) will have a lower percentage than people who do not have CMV.  If that is true, this was to be expected, even without the parasite problem.  But the steady decline in the last three percentages--24, 23, 22--doesn't sound very good!  As you say, a lot will depend on the next set of labs.  

Thank you!  

[spacebarsux]

However, barring something extreme--like finding out I have only ten t-cells left--it is hard to think of any result that would cause me to begin treatment immediately.  Whether these numbers are a lingering after-effect of my long illness or the beginning of irreversible immune-system decline is something that I will want several months to determine.  
 

I think its fair to say that your CD4 numbers are still healthy and within normal range and a long way from anything suggesting  'irreversible immune-system decline'. 

[Since2005]

A week ago was my seventh anniversary of infection with HIV.  A week into my eighth year of living with this virus, I mostly feel good and am still optimistic.  
[/quote]

Congratulations Nestor! Going in 8th year into living with the virus, its an awesome achievement. My heart goes out to you by thinking how you were handling it by yourself alone and yet made the most of it during your vacation. Backpacking is my dream. I am glad you had done that already. I am not an expert but with your CD count CDC won't even recommend anything less than 500 and in Europe, its 350 for medication with such a low viral load I believe, but I might be wrong. In anyways, I think you are doing excellent without the med ( of course you would have to make a decision later). I kinda relate to you in a strange way ( as you know my story already) that I am not on Meds and I feel like I am doing great except recently with through some trauma which you already know. You seem to take care of yourself very well. Your numbers to me looks really good and I hope it continues to improve!!

[leatherman]

But the steady decline in the last three percentages--24, 23, 22--doesn't sound very good!

but if you look at the year's worth of numbers and factor in that 21% from last July, your percentage hasn't really changed much in a year's time.  your cd4s went from 600 to 530 which is well within the possible daily change amount of +/- 100; and your vl didn't even change by a log as it went from 31k to 39k.

Think happy thoughts, and hopefully your Aug labs will come in at cd4 575 and VL at 40K and you'll be able to continue without meds maybe even until next year. 

[Hoover]

Nestor,

From my experience, the blasto and other parasites can really mess with your body.
I took Nitaxozanide and it seemed to kill the blasto, but I will get new stool tests in two weeks to find out for sure.
My diarrhea is still as bad as ever, but I am not sleepy all the time like when I had parasites.
For the first hour after I get up in the mornings, I will have to rush to the toilet two or three times but good for the rest of the day.
I think I am glad I started my meds as I feel better these days and my number are getting better.
Wish you all the luck and joy you deserve.

Cheers from parasite paradise,
Hoover

[Nestor]

I think its fair to say that your CD4 numbers are still healthy and within normal range and a long way from anything suggesting  'irreversible immune-system decline'.  

Thank you!  I'm actually rather optimistic myself.  It's mainly that the words "new nadir" cast a sort of pall over everything.  I think the subtantial news is good.  

What I am hoping for is a repetition of what happened in April 2007.  The viral load had come down a lot, but so had the CD4 count--to one of my three lowest counts ever.  In the next test the CD4 count shot back up.  Possibly there is a delayed reaction--first the VL comes down, then some time later the t-cells go back up.  That is what I am hoping to see again this time.

but if you look at the year's worth of numbers and factor in that 21% from last July, your percentage hasn't really changed much in a year's time.   your cd4s went from 600 to 530 which is well within the possible daily change amount of +/- 100; and your vl didn't even change by a log as it went from 31k to 39k.

Think happy thoughts, and hopefully your Aug labs will come in at cd4 575 and VL at 40K and you'll be able to continue without meds maybe even until next year.  

Thank you, Mike.  But the problem with that is that July of last year was not a norm.  I was still recovering from the CMV illness, and far from back to normal.  And in fact, at that time too my doctor had said that if the next set of labs did not show an improvement, specifically because she did not like the 21%, we should start discussing treatment.  

Incidentally, my doctor's push for treatment this time has little to do with numbers.  She says that having HIV means one's immune system is working too hard, and that can have bad consequences down the road.  And then last year my body had CMV added to it, and now this year a possibly permanent parasite, which means I am fighting a war on more and more fronts.  

However, I won't give in easily.  Maybe even until next year?  My ambitions are more audacious even than that.  I dare to aspire to rival even Ann and her thirteen med-free years!  

Oh and by the way, I forgot to acknowledge a debt I owe you--I followed your example and got lots of sunlight and hopefully lots of vitamin D.  And at least I have a dramatically lower VL to show for it!  

[leatherman]

I followed your example and got lots of sunlight and hopefully lots of vitamin D.  And at least I have a dramatically lower VL to show for it!  

I'll keep my fingers crossed (which makes typing really hard. LOL) that the next batch of numbers for you is really, really good. Make sure to take good care of yourself though! While all that backpacking sounds fun, running around the world half-sick with all that stuff doesn't sound too good. 

[Nestor]

Nestor,

From my experience, the blasto and other parasites can really mess with your body.
I took Nitaxozanide and it seemed to kill the blasto, but I will get new stool tests in two weeks to find out for sure.
My diarrhea is still as bad as ever, but I am not sleepy all the time like when I had parasites.
For the first hour after I get up in the mornings, I will have to rush to the toilet two or three times but good for the rest of the day.
I think I am glad I started my meds as I feel better these days and my number are getting better.
Wish you all the luck and joy you deserve.

Cheers from parasite paradise,
Hoover

Thank you for your message.  You posted about blasto—or at least I saw your post on the subject—at the exact moment when my blasto crisis erupted; an uncanny example of synchronicity.  

I would actually like to understand the parasite business a bit better; there are too many mysteries here for my taste.  

First question:  I was fine for the first five weeks of the trip. Why?  And what suddenly went wrong at the end of the fifth week?  

Second question: I still have the blasto in my system, but a week after my return to the United States the diarrhoea vanished as suddenly as it had appeared.  Why?  It would seem that there was an irritant somewhere in my Southeast-Asian diet, and simply by leaving Southeast Asia I solved the problem.  But then how to explain the uneventful, healthful first five weeks which I spent there?  In fact, I spent a great deal of time in the same Thai village—one week in the beginning of the trip, and another three weeks at the end.  The first week I felt fine.  The last three weeks were one of the worst periods of the illness.  And yet I ate the same things in that same village in both periods.  

Third question: is there anything I can do to prevent this sort of thing in future?  I had a wonderful time in other ways, especially during the two months which I spent in Laos.  I loved exploring the Lao cuisine, learned the language, made friends, made plans for going back…but the illness was devastating.  If going back there means getting sick all over again, I don’t think I could do it.  But I hate the thought of never going back.  What to do?  

[Nestor]

A week ago was my seventh anniversary of infection with HIV.  A week into my eighth year of living with this virus, I mostly feel good and am still optimistic.  


Congratulations Nestor! Going in 8th year into living with the virus, its an awesome achievement. My heart goes out to you by thinking how you were handling it by yourself alone and yet made the most of it during your vacation. Backpacking is my dream. I am glad you had done that already. I am not an expert but with your CD count CDC won't even recommend anything less than 500 and in Europe, its 350 for medication with such a low viral load I believe, but I might be wrong. In anyways, I think you are doing excellent without the med ( of course you would have to make a decision later). I kinda relate to you in a strange way ( as you know my story already) that I am not on Meds and I feel like I am doing great except recently with through some trauma which you already know. You seem to take care of yourself very well. Your numbers to me looks really good and I hope it continues to improve!!

Thank you.  You know,  that trip wa ssomething I'd dreamed about for a really long time, and it took me years to save up money and get to a point where I could take it.  And recently a friend actually reproached me for doing so.  He said someone with a compromised immune system was being irresponsible in travelling in a part of the world where even healthy people are known to get sick.  That made me angry.  I never want having HIV to mean that I cannot do things that other people can do.  But now that I have had this experience, I wonder whether I could do it again.  I also wonder whether it does not reveal my immune system to be, in fact, more compromised than I thought it was.  After all, lots of other foreigners are travelling in those countries and not getting ill. 

Anyway, I appreciate your message!  Good luck to you too. 

[Since2005]

“ I wonder whether I could do it again” SURE!!!! You can do anything if you set your mind for doing that so. You did it once. Didn’t you? Don’t let anyone tell you otherwise. You probably should focus on the numbers of your CD4/viral load to see where you are. If you had asked me if I could travel around the world a month ago, I would have said ‘yes’. After the ‘symptomatic (I guess) signs, I think that attitude has changed, if you know what I meant. I do also identify myself with a lot since we both are not on meds and got infected with the virus around the same time and hopefully my immune is somewhat where you stand ( just hope . I hope your  lab results will be great as it has been for last 7 years and in any case you are prepared for anything, which is the most important thing. I sure hope you would make another trip soon ( if money allows and meet your newly made friends in South East Asia only if you want. It is gonna be up to you not up to the virus!!

Edit to add: I still do have 'anything can be done' attitude but I would fee better to say so after I go to doc, know my status, be on meds if I have to be on it and get stable and then again will have that attitude back. I hope you feel the same way. I am glad you had that attitude 'to do whatever' and you did and I know you still have that and you will have that always!!!!!!

[elf]

 I also wonder whether it does not reveal my immune system to be, in fact, more compromised than I thought it was.  After all, lots of other foreigners are travelling in those countries and not getting ill.  

I'm planning on going to India and Malaysia, but seeing this topic, I'm kinda scared.
I would have to travel without the travel health insurance (it's not available for HIV+ people here   ).
I guess I would have to take more meds with me (doxicycline and metronidazole should work fine against this parasite).

[spacebarsux]

I'm planning on going to India and Malaysia, but seeing this topic, I'm kinda scared.
I would have to travel without the travel health insurance (it's not available for HIV+ people here   ).
I guess I would have to take more meds with me (doxicycline and metronidazole should work fine against this parasite).

You can buy those drugs in India at very cheap rates, if it comes to that. Sent you a PM.

[Ann]

I'm planning on going to India and Malaysia, but seeing this topic, I'm kinda scared.
I would have to travel without the travel health insurance (it's not available for HIV+ people here  ).
I guess I would have to take more meds with me (doxicycline and metronidazole should work fine against this parasite).

I know you're not in the UK but elsewhere in Europe, but you might want to check this insurance company out - http://www.freedominsure.co.uk/ - they might insure you despite where you live. I've used them several times and their premiums are reasonable and affordable and their coverage is quite extensive. Good luck!

[Nestor]

I'm planning on going to India and Malaysia, but seeing this topic, I'm kinda scared.
I would have to travel without the travel health insurance (it's not available for HIV+ people here   ).
I guess I would have to take more meds with me (doxicycline and metronidazole should work fine against this parasite).

In my case metronidazole not only did not work fine against the parasite, but the worst phase of the illness--which lasted for more than a month--happened right after I finished taking it. 

[Hoover]

I hate the way metronidazole makes me feel also!

Hoover

[elf]

Speaking of parasites, the nastiest one for HIV positive people is Leishmania,  It lives in Latin America and Southern Europe (Spain, Italy, Greece). I don't go to the southernmost city of my country (Dubrovnik) because it is abundant there. It is spread via the sandfly bite.

The parasite enters the macrophages and it hides in them (instead of being eliminated by them).

The treatment is expensive and it requires 3 weeks of hospitalization.

http://www.who.int/leishmaniasis/burden/hiv_coinfection/burden_hiv_coinfection/en/index.html



There is a new medicine which also affects HIV:
http://en.wikipedia.org/wiki/Miltefosine

Miltefosine targets HIV infected macrophages, which play a role in vivo as long-lived HIV-1 reservoirs. The HIV protein Tat activates pro-survival PI3K/Akt pathway in primary human macrophages. Miltefosine acts by inhibiting the PI3K/Akt pathway, thus removing the infected macrophages from circulation, without affecting healthy cells.

[Nestor]

I posted a while back about my troubles with parasites that I picked up while spending the winter in Laos.  Briefly, the story was this: in early February, after five happy and healthy weeks travelling across Northern Thailand and Laos, I suddenly became extremely ill with endless diarrhea, red spots all over my body, major arthritic pains in my hips, and incapacitating fatigue.  To make matters worse, gout, which I'd had for three years, suddenly went through the roof and my foot was in constant pain.  I hope nobody reading this ever experiences anything of the kind.  

At the end of May, after a very difficult four months, I finally returned to the United States, and discovered that HIV had taken the opportunity to do its nasty thing.  

The diarrhea went away less than a week after I returned to the United States and, thanks be to God, has never come back.  

Intense fatigue persisted for another month, during which I was sleeping around thirteen hours a day.  Then that too subsided and I returned to a normal sleep schedule and normal energy levels.  

The one problem remaining was extreme gas and bloating, which finally threatened to reach intolerable levels.  But I persisted with optimism, patience, and a fierce determination to live as healthy a life as I could, and finally at the beginning of August the gas and bloating too finally went away.  From that time on I have been in every way back to my old condition or even better.  

The one bad news was that my gout continued to grow worse.  

On paper the news is not so good.  Not only do I still have the same blasto I've known about since February, but the last set of tests a couple of months ago revealed that yet another parasite, c. difficile, has also taken up residence in my gut.  This is particularly irritating because c. difficile proliferation is often a result of antibiotics use: by killing off so many other bacteria, the antibiotics create a vaccuum in which c. difficile can flourish.  I was extremely slow to be persuaded to take antibiotics, they did little or nothing to help--they certainly didn't eradicate blasto--and now here is clear evidence that they may have made things worse.  My doctor wanted me to take Metronidizole again, which I was adamantly opposed to.  Hoover of these forums recommended Nitazoxanide, which I mentioned to my doctor, who at first said no, Nitazoxanide does not treat c. diff.  But then she looked into the question more and found that yes, studies have indeed shown Nitazoxanide to be effective against c diff, so she prescribed that.  Thanks, Hoover!!!!  So I have my little bottle of Nitazoxanide, but I won't be takeing it any time soon.  Cosidering the fact that for three months now all my symptoms have been fading or have gone altogether, I can hardly believe that things are not getting better on their own.  I've read probably thousands of pages about intestinal flora in the past two months, and I've become convinced that the best hope is time and a good diet.  If I'm wrong, I've still got the Nitazoxanide should it prove necessary.  

Now for HIV!  

At the beginning of June I came back to the following lab results:  

563 T-cells, 23%, VL of 210,000.

Gulp.  I hadn't been in the 500s for years--not even at the height of the cyto-megalovirus crisis, and the VL was my second highest ever.  I threw myself into a healthy lifestyle but the results a month later were underwhelming:  

530 T-cells, 22%, VL 39,000.  

The VL coming down from the stratosphere is nice, but it was still much too high compared to historical norms, and the T-cell count was a new nadir.  That this came virtually on the day of my seventh anniverary of getting HIV was grim indeed, as was the new low percentage.  Also, on that day, for the first time, my doctor formally recommended that I start HAART.  I think my doctor is brilliant, and I take her advice very seriously, but I'm obviously going to need some time to come around to her point of view.  Note, however, that even she did not want me to start meds right then, but only pending the results of the next set of labs.  

In the month between getting those results and the next set of labs, knowing how much could depend on what they had to say, I redoubled my efforts to lead a healthy life.  I ate only the purest, most natural foods: meat and eggs from local, pastured chickens and cows, wild-caught fish, local organic vegetables, a few fruits and nuts, and that's it.  I completely eschewed sugar, white flour, and anything fake.  (I did not give up the occasional cocktail or glass of wine, however: life is too short!)  I slept eight hours a night, got loads of afternoon sunshine (thanks Leatherman for that tip!) did yoga, tried meditation, lifted weights regularly.  Anything that has a half-serious claim to being anti-viral or anti-parasitic, and that isn't mainifestly harmful or ridiculous-- shiitake mushrooms, coconut oil, kimchi, pumpkin seeds, garlic--I gave a shot.  

Along the way three triumphs.  

First a gradual general improvement.  I had more and more energy, felt less and less depressed despite unimaginable stress in my personal life, my skin started looking clearer and rosier and my knees felt more resilient.  

Second, while it is probably too soon to say this definitively, I seem to have, effectively, cured myself of gout.  I don't suppose gout is sufficiently interesting to many people here to justify my saying much about it, but if you're interested please PM me.  In short, the theory which I tested is that sugar is the culprit.  Sugar somehow messes up the kidney's ability to process uric aid.  And our doctors tell us, instead, to avoid offal and fish and seafood, the healthiest things in the world.  Two weeks after I quit sugar and white flour my gout pains were gone, and now, a month later, they still have not come back--this is the first month without gout pains in over a year, despite eating ten times the offal and fish I had eaten before.  Since gout has been a burden in my life for three years now, you can imagine how happy I am about that.  In this way even something like my parasitic illness can be a blessing in disguise--without it I would never have gone on the serious health "kick" that seems to have resulted in ending my gout!  

Third, gradual restoration of strength.  When I left the United States in December, I was doing around thirteen chin-ups in a set, and around forty-five chin-ups over the course of a few sets in a day.  Throughout my three months in Thailand and Laos I tried to do chin-ups but failed to do even one; that is how weak I was.  In April, when I left Laos and arrived in Hanoi, I felt my strength coming back and, sure enough, I managed for the first time in months to do one, single, measly little chin-up that left me exhausted for the rest of the day.  Even more humiliating, a full forty-eight hours later, I went into that same gym and tried to do a chin-up and couldn't even do one!  You can imagine how humiliated I felt, walking into a gym ful of guys (extremely nice guys, by the way--I would rather go to the gym in Hanoi than anywhere else in the world--there is a rational understanding of how to share weights that seems to elude gym-goers in my country) imagine, I said, how I felt when I walked into a gym and had everyone see me try to do one measly chin-up, fail, and walk out again!  Well, by the middle of July I was finally doing five chin-ups at a time,  and just about a week ago, finally, I reached (though I half died trying) the magic number ten.  Of course it has not escaped my notice that, if chin-up doing ability is any measure, I am still weaker than I was before the parasites crisis began, but it is still a triumph.  

And now, today's icing on the cake.  I walked into my doctor's office fully expecting to learn that I had 450 t-cells and to begin discussing whether it was atripla or isentress or some other medicine that had a prominent place in my near future.  I would still have wanted a couple of more lab results just to be sure, but I would have supposed that meds were inevitable sooner rather than later.  And here is the news:  

677 T-cells, 22%, VL 21,000!

Not bad after more than seven years of HIV and two shocking illnesses in the last fifteen months!  

It would be dishonest to claim that there were no clouds in the sky.  For one thing, I am not pleased with the persistently low percentage, and my suppressor cells have risen steadily too.  But what else can I expect when in the last fifteen months my body, already burdened with HIV, has had added to it first CMV and now not one but two nasty intestinal parasites?  For the moment I am simply pleased that I have fought these enemies off so spendlidly, at least for the time being.  

Nevertheless, my doctor still says that she, if she were in my shoes, would start HAART today.  She has suggested that I research immuno-senescence, and as I respect her judgement I of course shall do so.  The basic idea is that to go on and on fighting is not the natural state of the immune system and cannot go on indefinitely without causing damage.  It is interesting to note that this is not the advice my doctor would have given even as recently as a year ago; her thinking on the subject has evolved a great deal since then.  Very possibly mine shall too, but it is not there yet.  

She also disagrees with my decision not to take further antibiotics for c. difficile, but she does understand it, seeing how unhelpful the last two unfortunate attempts were to give antibiotics a chance. This is what I love about my doctor: she respects and supports my decisions even when they are not what she would prefer; she makes a strong case for her view, furnishes me with information, and then leaves me to make my own choices.  

For the moment, I'm simply happy that the storms are, for the moment, over, and that I never despaired, allowed the illness to ruin my vacation, or gave up fighting for my health.  Don't give up!  

[spacebarsux]

Well done Nestor!

[mecch]

From a distance I perceive someone willing to accept a fair amount of daily physical discomfort and general weakened health, rather than getting medical attention and appropriate treatment for things that are treatable.  

Diet and exercise and fitness, in a weakened sickly person, to maybe cure things over months and months?  For instance, months and months of diarrhea probably caused by parasites, and not treated effectively, for a person with an active HIV infection??

Personally, I don't know why people are cheering you.  Did I miss some information?  What was so "splendid" about your decision to walk around for months with parasites and waste away your weight?

I get it that you want to stay off HAART for as long as possible. OK  

But how about getting effective treatment for the other challenges that come your way, and therefore, keeping your health as strong as possible.

Seems like you are, just perhaps, a bit of a masochist for suffering and "fighting for health" when it's perhaps not required.

Every other year around about August it seems I get a parasite infection.  I know the symptoms.  So now I get it, I suffer the symptoms a few days and know what it is, go get the medicine and pop, the next day, I'm fine.  Nothing to fight. Body stays strong. Continue to enjoy my full health everyday.

If I were traveling to places with parasites and other health dangers that are known, I would get a medical kit of drugs, and of course all the vaccines, and/or would try to see doctors there, if my health took a dive.

[Since2005]

First of all, I wanted to say where the hell have you been!! I guess I am glad that you are out fighting. Yes, I read your post and got Goosebumps and I am being very honest! I sure appreciate your dedication and I think its very inspiring!! Congratulations on your stat. Way to go!! Cheers!!

Personally, I don't know why people are cheering you.  Did I miss some information?  

Meech,, I hope you realize what you are saying here. After I read his thread I felt that he had such a dedication ( please just take the meds off your head for one sec, think about the achievement and dedication and look at the result). Yes, you did miss that. Well, with that you also missed that he is healthy, eating right, working out and taking care of himself. You know what else you missed? Inspiration that he provides to others. You want more list? I would read it again. He has worked so hard ( despite his personal stressful info that he did not want to share), he has achieved so much by himself . Please don't tell me you did not see that. Oh wait, you already did say you did not get it. Well then nothing anyone or I can say unless you realize that yourself.
 

Seems like you are, just perhaps, a bit of a masochist for suffering and "fighting for health" when it's perhaps not required.

Isn't that what everyone should do? Fight for our health. You may not realize that you are also fighting. You just needed some help. Nothing wrong with that. We all will would need help at some point. Yours is already there and his need as he feels not there yet and that's why he choose to fight. Guess what, he won that battle and he knows now he can do it again if he has to. Is that worth fighting for? Because of that, your word of choice is absolutely wrong to my opinion.

Every other year around about August it seems I get a parasite infection.  I know the symptoms.  So now I get it, I suffer the symptoms a few days and know what it is, go get the medicine and pop, the next day, I'm fine.  Nothing to fight. Body stays strong. Continue to enjoy my full health everyday.

That's good for you. I am glad you have figured that out. Again, if someone decides to take a different route than that is his/her choice. Well, if someone choose to take stairway instead of elevator then would you mind?
 
Meech, I know you care so much and I know and believe that in my heart and I can tell just reading your threads. Sometimes, I have a hard time realizing what you are saying but by 'going deeper' I get the sense of caring. To be honest with you, I could not take myself any deeper after reading your comment this time. I was crashed. How could you not see his achievement. Tell you what it is not temporary, his body has learned itself how to fight, have built the resistance to fight the invaders. I hope you at least get that and see his dedication to fight, which helps one to learn if one put his/her mind to things yes one can achieve the goal. I have got that information and I am sorry you did not get that value.


Edited to add: Once again, I did realize that how we all are so different from each other. One gets Goosebumps and another look at a masochist from the very same reading! What a world!

[mecch]

Since, the fact that you are so interested in this "theatrics" of the "fighting heroic body" worries us all. And this is just the same worry I had reading about the OP's experience in India.

Yes take the stairs, not the elevator. Take the elevator, not the stairs.  

I can totally appreciate the discipline and "strength" required to do a physically demanding challenge, when one isn't feeling physically fit.  

As long as everyone knows that the body can not be trained or fed or willed to fight HIV, that virus, the one we have and which kills.  No amount of willpower, physical fitness, great diet, is going to keep an HIV infection from doing its damange.  

So we are all mature in this thread and of course we are all going to take the HAART when it is necessary, because that is the only solution to maintaining health.

So I think i wanted to expresss, to the OP, and to the forum in general, any readers, that HIV will never REWARD anyones' character or stamina or clean righteous living, or dedication or willpower, by laying off its attack on the body.    

Someone wants to fuck around with nonfatal pathogens by trying holistic routes and mind over matter, kundalini yoga, macrobiotics, spiritual awareness, and treks through the jungles of Borneo, OK fine.   Fine and dandy.  

Just as long as he knows where to draw the line.    

I think it's a poor idea to let any pathogen that is obviously seriously fucking with your body, have its way, while also being HIV+ and not being on HAART.   Its putting one stressor on top of another.  

Just my personal though. I am not a doctor.   But, the idea that overcoming a nonfatal pathogen like Strep, or Parasites, or STDS, or whatever the fuck, by letting the body duke it out - adds any "strength" to the body, that carries over for its fight against AIDS - this is a dangerous belief.  

Just my opinion.

Yes, noticing stamina in this tread.  Willpower.  But for what???

To the OP:  yes I get that you tried some medication (... reluctantly.... noticed this word, as well) but also that you felt it hadn't worked, and you felt that the weight loss and months of runs was because you had a parasite.

Then upon return, with other symptoms continuing, you refused a recommended treatment.  And now that things are running smoothly, the one treatment you would be OK for, well, you don't need it.  Cause diet and exercise is the key.  

And then there is the recommendation for you to start HAART.  Which you feel not ready for -- is this because of the super duper efforts elsewhere ("I've cured myself of gout".  "I've cure myself of parasites.")

Well, just my view from a distance.  Just as long as you know you can't cure yourself of AIDS.  

[leatherman]

So I think i wanted to expresss, to the OP, and to the forum in general, any readers, that HIV will never REWARD anyones' character or stamina or clean righteous living, or dedication or willpower, by laying off its attack on the body. 

excellent quote, mecch, and even more excellent advice to the OP.
I was trying to write up some similar but you stated it well.

[Nestor]

I'm a bit confused by pretty much everything you've written here. 

For one thing, you talk about "rather than getting medical attention..." etc.  Had you had read my story, you would have seen that I saw a doctor, and took the prescribed antibiotics, shortly after my illness began.  When my illness took a turn for the worse a month or so later, I again saw a doctor, and again took antibiotics.   They did not work. 

Precisely what "appropriate treatment" did I not get? 

The one thing that would have worked, of course, was leaving Laos (not India or Borneo), but I decided that life was short, and travelling in Laos was not something that I was willing to give up, despite the discomforts. 

Diet and excersice and fitness were what I tried ONLY AFTER trying antibiotics twice.  The antibiotics didn't work.  The other stuff did. 

Brief update:  My health has continued to be excellent since August. 

From a distance I perceive someone willing to accept a fair amount of daily physical discomfort and general weakened health, rather than getting medical attention and appropriate treatment for things that are treatable.  

Diet and exercise and fitness, in a weakened sickly person, to maybe cure things over months and months?  For instance, months and months of diarrhea probably caused by parasites, and not treated effectively, for a person with an active HIV infection??

Personally, I don't know why people are cheering you.  Did I miss some information?  What was so "splendid" about your decision to walk around for months with parasites and waste away your weight?

I get it that you want to stay off HAART for as long as possible. OK  

But how about getting effective treatment for the other challenges that come your way, and therefore, keeping your health as strong as possible.

Seems like you are, just perhaps, a bit of a masochist for suffering and "fighting for health" when it's perhaps not required.

Every other year around about August it seems I get a parasite infection.  I know the symptoms.  So now I get it, I suffer the symptoms a few days and know what it is, go get the medicine and pop, the next day, I'm fine.  Nothing to fight. Body stays strong. Continue to enjoy my full health everyday.

If I were traveling to places with parasites and other health dangers that are known, I would get a medical kit of drugs, and of course all the vaccines, and/or would try to see doctors there, if my health took a dive.

I'm a bit

[Nestor]

Sorry--I only read this after replying to your previous post.  

First, of course I was reluctant to try antibiotics.  Anyone who is not reluctant to take antibiotics needs to learn some more about their effect on the body.  In light of the the result I wish I had never taken them.  

No, I did not refuse a recommended treatment with "other symptoms continuing".  The only thing that persisted after I returned to New York was fatigue, and even that was gone by the middle of July.  My doctor didn't recommend Nitazoxanide until much later, when she discovered c. diff.  The fact that I continued to have tests and see a doctor on the subject suggests that I took the issue seriously.  I picked up the Nitazoxanide which my doctor presribed and had I had any significant gastro-intestinal difficulty I would have taken it.  I still have the bottle with me, and I still haven't had any gastro-intestinal distress.  Not taking antibiotics for something that isn't causing me any problems--is that bizarre?  

No, not taking HAART is due to the little matter of my having 677 t-cells.  I guess that's bizarre too.  

To the OP:  yes I get that you tried some medication (... reluctantly.... noticed this word, as well) but also that you felt it hadn't worked, and you felt that the weight loss and months of runs was because you had a parasite.

Then upon return, with other symptoms continuing, you refused a recommended treatment.  And now that things are running smoothly, the one treatment you would be OK for, well, you don't need it.  Cause diet and exercise is the key.  

And then there is the recommendation for you to start HAART.  Which you feel not ready for -- is this because of the super duper efforts elsewhere ("I've cured myself of gout".  "I've cure myself of parasites.")

Well, just my view from a distance.  Just as long as you know you can't cure yourself of AIDS.  

[Nestor]

Hey, thanks a lot for the support!  It's great to read! 

First of all, I wanted to say where the hell have you been!! I guess I am glad that you are out fighting. Yes, I read your post and got Goosebumps and I am being very honest! I sure appreciate your dedication and I think its very inspiring!! Congratulations on your stat. Way to go!! Cheers!!
Meech,, I hope you realize what you are saying here. After I read his thread I felt that he had such a dedication ( please just take the meds off your head for one sec, think about the achievement and dedication and look at the result). Yes, you did miss that. Well, with that you also missed that he is healthy, eating right, working out and taking care of himself. You know what else you missed? Inspiration that he provides to others. You want more list? I would read it again. He has worked so hard ( despite his personal stressful info that he did not want to share), he has achieved so much by himself . Please don't tell me you did not see that. Oh wait, you already did say you did not get it. Well then nothing anyone or I can say unless you realize that yourself.
  
Isn't that what everyone should do? Fight for our health. You may not realize that you are also fighting. You just needed some help. Nothing wrong with that. We all will would need help at some point. Yours is already there and his need as he feels not there yet and that's why he choose to fight. Guess what, he won that battle and he knows now he can do it again if he has to. Is that worth fighting for? Because of that, your word of choice is absolutely wrong to my opinion.
That's good for you. I am glad you have figured that out. Again, if someone decides to take a different route than that is his/her choice. Well, if someone choose to take stairway instead of elevator then would you mind?
 
Meech, I know you care so much and I know and believe that in my heart and I can tell just reading your threads. Sometimes, I have a hard time realizing what you are saying but by 'going deeper' I get the sense of caring. To be honest with you, I could not take myself any deeper after reading your comment this time. I was crashed. How could you not see his achievement. Tell you what it is not temporary, his body has learned itself how to fight, have built the resistance to fight the invaders. I hope you at least get that and see his dedication to fight, which helps one to learn if one put his/her mind to things yes one can achieve the goal. I have got that information and I am sorry you did not get that value.


Edited to add: Once again, I did realize that how we all are so different from each other. One gets Goosebumps and another look at a masochist from the very same reading! What a world!

[Hoover]

I have done all the meds and the zoo up my ass never seems to be affected too much.
Entamoeba histolytica   cyats and Blastocystis hominis (many)

All appropriate meds have been taken and do nothing or I am constantly reinfected.
What to do, move to a cold country?
Good luck finding someone with money these days to buy this house and free me to move.
Like Nestor, it appears my next step is to make myself healthier to compensate for all my bugs.
Other than diarrhea when I wake up, this seems to be manageable.
Latest labs show a CD4 of 757 and UD. The labs keep getting better since I started the antivirals.
Maybe I will pull out the herbs that cut the number of parasites down and just make them a daily ritual.
If anyone has any words of wisdom, I am listening.

Cheers from paradise,
Hoover

[mecch]

The one thing that would have worked, of course, was leaving Laos (not India or Borneo), but I decided that life was short, and travelling in Laos was not something that I was willing to give up, despite the discomforts. 

That is what I think you should have done. Your body, do what you want, of course.

 Far as I know, parasites are something medicine in "rich" countries can deal with quickly, thoroughly, and well enough.

Personally, I wouldn't live with parasites.  Especially having HIV and certainly never if my HIV was untreated.  Just my choice. 

You have a right to your priorities. I get the point about it was once in a lifetime travel and adventure, or priority to treating a medical condition.

[mecch]

Sorry--I only read this after replying to your previous post.  

First, of course I was reluctant to try antibiotics.  Anyone who is not reluctant to take antibiotics needs to learn some more about their effect on the body.  In light of the the result I wish I had never taken them.  

That is a personal opinion.

I think its CRAP advice to sling around in an HIV forum.

Two weeks ago I had food poisoning and was horribly sick, until the 2nd visit to the clinic, the blood tests that said I had bacterial infection, and the antibiotics to treat it.

You have a right to be a medical luddite about antibiotics. 

I certainly don't think antibiotics are bonbons without issues. 

But hey they work, and my smart medical doctors tell me when I need them and give me the right one, to the best of their expertise based on years of practice and education.   

[Hoover]

I am not certain I am reading Meech's response correctly but believe he is saying take better drugs.
After 6 years with parasites, I have tried all the meds from rich countries and they do not work on my bugs.
Until you are in our shoes, it is not that easy to judge our actions.
In countries where it never freezes, parasites never die.

If I have misunderstood your your message, please restate.

Hoover

[mecch]

Its an old thread, an old topic.

I am sure you are correct, it is not easy, sometimes, to fight or eliminate parasites.

I posted in this thread after I read this:

At the end of December I left for a five-month backpacking trip in Thailand, Laos, and Vietnam.  On the fifth week of that tour I suddenly became ill with extreme diarrhea, red spots on my body, aches in various joints, extreme fatigue and other problems.  I went to the hospital in Vientiane and it turned out that I was infected with Blastocystis Hominis, the same parasite that Hoover wrote about here: 

I reluctantly took Tinidizole.  Things got better for a short time and in fact the joint pain and the red spots went away for good.  But in April the diarrhea took a dramatic turn for the worse.  This time I took Metronidizole and Ciprofloxacin.  I had hardly  taken any medicines at all before this episode, let alone antibiotics, and these turned out to be extremely harsh. 

They also did not get rid of the parasite. 

I refused to allow all of this to ruin my vacation, and in fact had a magnificent time.  Gradually I got used to my
symptoms and learned to live with them.  But it was clear that I had become a far weaker person than I had been before.  In February I had walked 25 kilometers in one day, with a forty-pound backpack on my back; in April a six-kilometer walk was enough to leave me exhausted! 

One good side was that, as with the CMV crisis a year earlier, illness proved to be the dieter's friend, and I lost
about twenty-five pounds over the course of the five months.  By May I was actually svelte for the first time in
my life.

I had an impression that this person suffers because of fears of drug treatments. I dont know if that is true. It was my impression.  Radical weight loss.  Long term digestive caos.  Etc.

"A complication is the fact that I've still got blasto.  Tests have shown it and while the diarrhea has gone away, I do have some IBS-type symptoms that I had never experienced before.  The question is whether to try to annihilate it with yet more harsh anti-biotics or to live with it and hope it goes away.  Ongoing co-existence of HIV and this parasite could be a dangerous thing, as both have a tendency to cause nutrient deficiencies, among other things.  But when I think how ghastly I felt during that week of ciprofloxacin and metronidazole I am in no mood to contemplate further treatment--especially when I consider that they didn't even get rid of the bug."

My concern was that the OP could carry over fears expressed about antibiotics to fears about staring HAART when its time.  Also that infections that MIGHT be successfully treated are not being treated.  While being HIV+.  And not on HAART.

Also, I contributed because I saw Since got involved, and at the time, I was concerned that Since keep sticking to the plan to trust medicine (when needed) and regular monitoring for dealing with HIV.

Hoover:  Nestor is not living in the tropics, like you are.  So... does he have the constant exposure and risk that you claim to have?

I get nervous when I hear people MAYBE thinking that some sort of lifestyle actions are going to help fight nasty bacterial, parasitical, or viral infections.  Or MAYBE thinking that steeling a body, through fitness or hardship will somehow prepare for a longer or more successful fight against the HIV virus.

I think there are active things one can do, learn, emotionally and psychologically, for living well with HIV.   

I don't think emotions, psychology, fitness, grit, will, spirituality, nutrition, etc etc etc have much effect on what the virus does. 

That's all I'm saying.  If possible feelings and beliefs I have mentioned above have no truth to any one of you, Hoover, Since, to Nestor, just ignore me and my annoying worrisome contribution to this discussion.  Sorry.

[Hoover]

Nestor,

Yesterday I emailed Jackie at badbugs.org and got her 3 med regiment to kill blasto.
Interesting site and since I have done all the rest of the drugs, I will give it a shot.
That is if we can get the meds. Costa Rica is strapped for money and customs is catching more and more things so it may take some doing if we need to get the meds from India or some other country.

Remember to always check with your doctor before starting any new meds.
I will text mine now!

Hoover

·       Secnidazole  400 mg (30 Capsules) 3 times a day
·       Diloxinide Furoate 500mg (30 Capsules) 3 times a day
·       Septrin DS (20 Capsules) 2 times a day
 10 day treatment.

 

[Since2005]

Nestor - glad to hear you are doing okay with your numbers..

Hoover, Since, to Nestor, just ignore me and my annoying worrisome contribution to this discussion.  Sorry.

Hey Now! Don't be sorry.. we could agree to disagree.. and sometimes any discussion could be annoying but your contribution is very much needed. So, please don't hold back