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Author Topic: Mycobacterium Avium Complex ( MAC )  (Read 3503 times)

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Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Mycobacterium Avium Complex ( MAC )
« on: July 01, 2008, 02:29:39 PM »
I was recently diagnosed as having MAC, can anyone give me any information on this?  Please help if you can... Thanks
Grinch

Offline Peter Staley

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  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Mycobacterium Avium Complex ( MAC )
« Reply #1 on: July 01, 2008, 03:10:23 PM »
We've got a lesson on MAC here on AIDSmeds:

http://www.aidsmeds.com/articles/MAC_6710.shtml

Peter Staley
Founder
AIDSmeds.com

Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Mycobacterium Avium Complex ( MAC )
« Reply #2 on: July 01, 2008, 06:54:44 PM »
Thanks for the help, do you know or happen to know anyone who may be dealing with this situation. I am just trying to find out some first hand information from someone who maybe has had or has MAC.

Thanks again.
Grinch

Offline YaKaMein

  • Member
  • Posts: 368
Re: Mycobacterium Avium Complex ( MAC )
« Reply #3 on: July 02, 2008, 12:21:53 AM »
Since you say you were diagnosed, you're under a doctor's care, right?. Are you being treated? If so, your symptoms should begin to disappear over the next few weeks.

09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline CWD6474

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  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Mycobacterium Avium Complex ( MAC )
« Reply #4 on: July 02, 2008, 01:19:44 PM »
Yes, I am under doctor care. I am taking Clairithromycin, for the MAC, along with my regular drugs.  Lexiva, Combivir, and Viread. I also take a bactrim pill daily.

It has been 3 almost 4 weeks, and the yellowish diarreha still stays.

I drink Imodium like it is water. Only thing that helps, as I still am able to work, and have a fairly normal life outside of this.

My viral load is 600  CD4-56.

Thanks, for your concern.
Grinch

Offline YaKaMein

  • Member
  • Posts: 368
Re: Mycobacterium Avium Complex ( MAC )
« Reply #5 on: July 03, 2008, 02:45:12 AM »
Hey CWD,
Your physician probably is treating your MAC presumptively, that is, based on your symptoms and CD4s. Testing for MAC is generally not done since taking a bone marrow sample and/or culturing blood may not confirm it. The clarithromycin [Biaxin] is the first line treatment for MAC. My MAC treatment was Azithromycin [Zithromax] 1200mg weekly and for prophylaxis til my t-cells reached 100.

For me, I had chronic diarrhea months prior to diagnosis along with recurrent fevers, night sweats, wasting weight loss and extreme fatigue. Consider asking your doctor to rule out other causes for your diarrhea which could also be caused by HIV itself. We did various stool tests and scopes which consistently came back negative. I also developed PCP and took Bactrim for treatment and prophylaxis til my t-cells reached 200.

With recurrent diarrhea, ask MD for something to help if over the counter meds don't give you relief. It takes months to recover. Give it time. Hopefully, as your viral load becomes undetectable and CD4s head up, you'll experience more healthful changes.


09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Mycobacterium Avium Complex ( MAC )
« Reply #6 on: July 03, 2008, 02:00:15 PM »
Thanks for the great words.  I have the same symptoms that you had. I have had several stool, blood, and tests done. ALL have come back negative.

I have chronic diarrhea, I have lost 30 pounds, and my appetite is nearly gone.  I also anytime I eat, not an hour or two later that I have to go, and my food is just running through me. Got any suggestions for this?

 I guess it is just a waiting game.  Thanks,
Grinch

Offline YaKaMein

  • Member
  • Posts: 368
Re: Mycobacterium Avium Complex ( MAC )
« Reply #7 on: July 03, 2008, 02:42:40 PM »
Working with your physician is a partnership. If it's not working [that is you're still feeling like crap and your symptoms are not being managed], then you may need to see someone else. If you like your current doctor great, but no reason to suffer--ask for a referral/consult. You can still see her/him AND get the help you need elsewhere. If you're not already seeing an Infectious Disease (ID) specialist or one who is knowledgeable with HIV management, then get to one. All doctors are not equal.

DISCLAIMER: I am not a physician.

It might be difficult, in fact, it is - but BE assertive, even aggressive. If you can't do it, find someone who will.
Your health and quality of life are at stake here. Waiting is not the best option - but I respect your right to do so.

You might get a complete copy of your medical records [always keep one at hand] and take it with you. They can copy it and add it to your chart wherever you go.

I don't know your situation and apologize if I'm too gruff. I really concerned about this for you and want you to get better. I know how crappy you feel especially, excuse me, crapping all the time. It's no frigging fun.

It may take time and effort to determine what the cause is, if ever; but when you feel better you be glad you took control. This friggin virus, just can't win, okay?

Enuf of my vent. Warning: As your health improves, you may, just may wish you could keep the weight off as it comes back with a vengence. LOL :'(

-YaKaMein
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline CWD6474

  • Member
  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Mycobacterium Avium Complex ( MAC )
« Reply #8 on: July 03, 2008, 02:51:03 PM »
Could you possibly maybe tell me some things to eat that may stick with me. Everything I eat runs through me right now.

Please if you can help.

What kind of diet did you eat when you had it?

Thanks
Grinch

Offline YaKaMein

  • Member
  • Posts: 368
Re: Mycobacterium Avium Complex ( MAC )
« Reply #9 on: July 03, 2008, 04:57:28 PM »
Gosh, not many fond memories here.

It does not really matter what you eat since food is not issue. MAC affected my gut so I was not able to absorb nutrition no matter what I consumed. I was losing weight rapidly [nearly 40 lbs] and feeling awful. I ate yoghurt daily [still do] and anything else I could but to little avail  You might avoid foods with high fiber or roughage like broccoli, fruits with peels [apples, cherries, etc], nuts, etc.

I recall times when NOTHING tasted right. But I tried to eat anyway. It's a challenge when you don't have appetite, some of your favorite foods taste awful AND you have no energy, fevers, etc. Everything I ate took little time passing through and I would literally rise from the commode only to sit down or rush to it immediately.

Take family and friends up on offers to bring or prepare meals for you. It makes them feel like they're helping. Some may even be good cooks. You must continue to eat as much as possible even if it's minimal. Drink liquids to avoid dehydration and electrolyte imbalances.

If you're ASO brings meals to you. Sign up and eat what you can. These are some of things I did that worked for me.

Anyone else had MAC or have suggestions out there?

Lastly, Get thee to a doctor who can help you, ASAP. This may or may not be MAC. There's the rub. I do hope you get some relief and feel better soon.

Feel free to PM me if want to.

-YaKaMein

09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline pacerintl

  • Member
  • Posts: 83
Re: Mycobacterium Avium Complex ( MAC )
« Reply #10 on: July 04, 2008, 07:18:40 PM »
You didn't mention if you are vomiting, this can happen quite a bit just taking your meds or eating just a little something.  Anything you eat now is going to all tast the same, awful...but you need to get as many calories in you as you can.  Eat whenever you can even if it's just small pieces of something, even sucking on hard candy.  It is extremely important that you takes your meds as prescribed...take just a few at a time so that if you end up vomiting right after swallowing it will be easier to know which meds came back up....wait a few minutes and try again.  Keep a small kitchen garbage can with plastic liners close by.  Get as much rest as you can, eat a little something and take your meds...even when you don't want to.  It will take time but your stools will hopefully get stiffer.  You will hate me for this but oh well...if your not using Depends yet just try it...it will make things so much easier in the short term.

Offline OutOfDarkness

  • Member
  • Posts: 90
Re: Mycobacterium Avium Complex ( MAC )
« Reply #11 on: July 04, 2008, 07:25:16 PM »
Could you possibly maybe tell me some things to eat that may stick with me. Everything I eat runs through me right now.

Please if you can help.

What kind of diet did you eat when you had it?

Thanks

Hi there CW

I know of a diet that is used for diarhhea, it's called the BRAT diet, all you eat is Bananas, Rice, Applesauce,Toast.  These foods tend to bind your system.  It may or may not work for you, but I hope it does.  Of course there are over the counter meds for diarrhea, and I noticed sometimes switching what you take can help with temporary relief.  I had these bouts and Immodium pills temporarily worked, then when it no longer worked I switched to Kaopectate liquid and after taking it for awhile it started to become ineffective.  Sometimes your diet mixed with the meds can cause you gastrointestinal problemss, maybe you are eating something that is the cause.  

I agree with Yaka, if you continue to have these bouts with no relief your doctor can prescribe something, I am not sure what that is though.  

Hope you feel better soon :)
2000 - seroconverted
2005 - cd4 350, VL 113,000
3/06 - started sustiva/truvada
3/08 - cd4 1,300 VL >50(undet.)

Offline Dachshund

  • Member
  • Posts: 5,941
Re: Mycobacterium Avium Complex ( MAC )
« Reply #12 on: July 05, 2008, 09:05:43 AM »
You will hate me for this but oh well...if your not using Depends yet just try it...it will make things so much easier in the short term.

I know you're negative pacerintl and you will hate me for this but oh well...why don't you wear some Depends and get back to us. You know, walk a mile in our diapers. >:(
« Last Edit: July 05, 2008, 01:01:12 PM by Dachshund »

Offline CWD6474

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  • Posts: 27
  • 38 year old gay male
    • TulsaChip
Re: Mycobacterium Avium Complex ( MAC )
« Reply #13 on: July 05, 2008, 09:31:31 PM »
Thanks for all of the help... And yes I am using Depends....
Grinch

Offline LordBerners

  • Member
  • Posts: 415
Re: Mycobacterium Avium Complex ( MAC )
« Reply #14 on: July 07, 2008, 05:43:39 AM »
Wow, I only just now heard of this disease 'MAC'.  I'm currently being treated for tuberculosis, but all of my symptoms could just as easily be MAC, and the doctors really have no precise idea when they diagnose - it is all very approximate.  Mine just said TB due to a lymph node biopsy, but MAC also effects the lymph nodes.

I hope that I'm not treating the wrong thing..  so far the TB meds have brought my appetite back to complete normal, and my weight is going up about a pound a week, so those are good signs.
Please, just call me Berners.. or Baron.

Offline BT65

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  • Vegas baby!
Re: Mycobacterium Avium Complex ( MAC )
« Reply #15 on: July 07, 2008, 08:41:04 AM »
LordBernes,  Please don't start diagnosing yourself based on someone else's diagnosis or symptoms.  There are diseases whose symptoms appear almost ditto in nature; but that doesn't mean your doctors have misdiagnosed you or don't know what they're doing.  Hang in there.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline LordBerners

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  • Posts: 415
Re: Mycobacterium Avium Complex ( MAC )
« Reply #16 on: July 07, 2008, 11:08:41 AM »
LordBernes,  Please don't start diagnosing yourself based on someone else's diagnosis or symptoms.  There are diseases whose symptoms appear almost ditto in nature; but that doesn't mean your doctors have misdiagnosed you or don't know what they're doing.  Hang in there.

Of course your advice is reasonable, and I thank you for it Bettytacy, but it is also true that they are not supermen.  As often as not treatment is in reality part of diagnosis - as in treat for what you think it is, and if it works, it must have been that.  It certainly doesn't hurt to ask one's docs what they're thinking from an informed position.

And now I would like to apologize for hijacking this thread :/
Please, just call me Berners.. or Baron.

Offline BT65

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Re: Mycobacterium Avium Complex ( MAC )
« Reply #17 on: July 07, 2008, 09:57:03 PM »
It certainly doesn't hurt to ask one's docs what they're thinking from an informed position.

And now I would like to apologize for hijacking this thread :/

True, true.  Do ask.  But certain diseases do mimic the same symptoms.  I just don't want people thinking they have a million and one things.  Good luck, Lord.

Ditto the apology. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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