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Author Topic: Help!!!!  (Read 2511 times)

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Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
« on: September 23, 2008, 11:48:29 PM »
I have had the same problem now, for going on a year, however I am not on Atripla. I have lost 40 pounds, I live in the bathroom, and still no results.

I was diagnosed as having MAC (mycoavium bacterium complex) This is why my doc says I go and go and go and go.  I have been on the antibiotics along with my regular drugs and still no stopping the going and going and going.

The only way I am able to function is I am spending over $80.00 a month on Imodium AD. If anyone can help me, please feel free.  I will take all advice.

I am on
Lexiva, Viread, Combivir, Prednisone, Potassium, , Xifaxin, and Bactrim.

Please help if you can

Offline anniebc

  • Member
  • Posts: 6,156
  • AM member since 2003
Re: Help!!!!
« Reply #1 on: September 24, 2008, 12:06:57 AM »
Sorry to hear you are having so many problems with this..I'm sure you have looked this up already but it's all I can give you..I googled this but not sure if it's any help to you.

"Treatment for MAC involves taking a combination of antibiotics. MAC treatment must include at least two drugs, one of which should be either clarithromycin or azithromycin. Ethambutol is the recommended second drug. Rifabutin, ciprofloxacin, or amikacin may be added for people with more severe MAC. All of the drugs are pills except amikacin, which is given intravenously (IV).

In cases where people with MAC either do not respond to treatment at all or relapse after first responding to treatment, many doctors recommend a type of drug test that checks to see if the medications will work on the type of MAC a person has. This is called a drug susceptibility test. Susceptible means that the drugs will likely work, while resistant means that the drugs probably will not work. Susceptibility testing is recommended mainly for clarithromycin, azithromycin, and rifabutin, though other drugs might be tested as well.

MAC and the drugs used for treatment are hard on the body. You might consider visiting a nutritionist when you are first diagnosed with MAC so you can keep your weight up and prevent wasting. There are also medications available to help ease common MAC symptoms such pain, nausea, vomiting, and diarrhea, so do not be shy in asking for them".

Never knock on deaths door..ring the bell and run..he really hates that.

Offline Tempeboy

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  • Like St Francis of Assisi I am wedded to Poverty
Re: Help!!!!
« Reply #2 on: September 24, 2008, 12:24:04 AM »
Hey mate,

The antibiotics that you are taking could be contributing greatly to your problem.  Yoghurt with the right cultures or even culture supplements can help.  So can fiber and calcium supplements and as Annie says a dietitian will have professional advice.

Some people I know take their Immodium half an hour before they take their HIV meds - this can improve things greatly.  Boosted Lexiva is highly associated with gastro side effects - you might be able to discuss switching this component of your meds.  The AZT in combivir could be contributing as well.  Once the diarrhoea improves you should start to put on weight.

Here is a cool fact sheet - http://positivelife.org.au/factsheet/17

Here is another resource on managing side effects that includes an easy and inexpensive home-made rehydration formula - http://www.afao.org.au/library_docs/resources/Managing_Side_Effects.pdf

hope things improve soon.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

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Offline Jacques

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  • Posts: 171
Re: Help!!!!
« Reply #3 on: September 24, 2008, 01:04:06 AM »
I'm not sure that the Xifaxan/Bactrim combo is a good  strategie for treating Mac. Those antibiotics are generally used to treat other kinds of infections. As Jan said in her post, clarithromycin or azithromycin ascociated with  Ethambutol  is the recommended first line treatment for Mac. Maybe you should review this with your doctor.

Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline LordBerners

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Re: Help!!!!
« Reply #4 on: September 24, 2008, 03:29:03 AM »
I was diagnosed with tuberculosis, an infection quite similar to MAC (as I understand it), a few months ago after a weight loss of around 40-45 pounds accompanied by complete loss of appetite.  Sometimes I wonder how the doctors could distinguish whether it was TB or MAC, as there was no actual testing done and the symptoms were similar - I had no lung troubles, though I never had any diarrhea at all.

I'm not expert but I think the antibiotic regimens for MAC are similar to those for TB.  I can report that within a week of beginning the standard regimen I felt great, appetite returned,  and I began to gain weight immediately.  So perhaps the docs evaluated their diagnosis by the success of treatment, or perhaps the treatment (rifampicin, isoniazid, ethambutol, and pyrazinamide) worked regardless of which bacterium/illness it was/is.

As far as I know these treatments are generally pretty effective, with a success rate in the 90%+ range, so I hope you can be treated.  I'm just a month away from the end of my six month short course and all is well.  TB doc says six months enough, hiv docs say go for nine months because we hiv-ers are more prone to the disease coming back.. I'll probably opt for the 'safer' option of the nine months if TB doc allows.

I have to admit that I still have a great deal of anxiety about whether this could be misdiagnosed MAC, and that the TB treatment might just be making it sort of 'in remission', only to come thundering back when treatment ends. 
« Last Edit: September 24, 2008, 03:34:04 AM by LordBerners »
Please, just call me Berners.. or Baron.

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Help!!!!
« Reply #5 on: September 24, 2008, 07:33:09 AM »
CWD -- we've got a great lesson here on MAC that's been reviewed by HIV medical experts, so it's well worth a read, and even worth printing out for your doctor:

(first page of multipage lesson -- click "next" for next page)

Offline jennynyc7

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  • Posts: 146
Re: Help!!!!
« Reply #6 on: September 24, 2008, 10:30:07 AM »
Antibiotics kills the "good" bacteria in your gut and can lead to irregular bowel habits so you need to replace it with a probiotic. I use the powder form (usually acidophillus) and add it to water I am drinking.  Of course, talk to your Dr first before you try it.

1/3/08-ARS began
Initial Vl=99000
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)

Offline BT65

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Re: Help!!!!
« Reply #7 on: September 24, 2008, 12:22:58 PM »

I'm not sure what type of prescription insurance coverage you have, but there is a prescription Loperamide (Immodium) that you might ask your doctor to write for and you might not have to spend so much.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Help!!!!
« Reply #8 on: September 24, 2008, 11:01:42 PM »
I want to say thanks for all of the help that you have offered, and the kind words, and I will give it and everything a shot and let you all know what happens.

Thanks again.


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