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Author Topic: Will it get better?  (Read 1744 times)

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Offline c69

  • Member
  • Posts: 31
Will it get better?
« on: October 19, 2006, 01:41:16 PM »
To start with:
Diagnosed Dec 2005, started meds in May (sustiva, truvada) at 279tcells.
Now undetectable and 400 tcells.
Now for my question:
I still feel like xxxx, tired, weak, neuropathy etc. Started working again but it's so hard to keep going.
How are your experiences over time? Did you get more energy, did it take months, years?
Did it ever get back to (somewhat) normal?
I know everyone is different, I just want to hear about your experiences, good or bad.

THX

C69
Meds since May 2006, Abacavir, Tenofovir, Reyataz & Norvir.

Offline wellington

  • Member
  • Posts: 508
  • Don't sweat the little things.
Re: Will it get better?
« Reply #1 on: October 19, 2006, 02:39:51 PM »
Diagnosed Feb 2006. First labs (March) showed CD4 at around 50 and VL was in the hundreds of thousands. At that time, I'd been suffering from a cough of unknown origin and had been taking antibiotics which seemed to help - somewhat. Upon receving those March labs, docs advised I should start some prophylaxis so on came a daily dose of Dapsone, as well as HAART. The coughing continued to get worse and at the point when I could barely walk, I entered hospital for a weeklong stay in ICU. After a bronchoscopy, the confirmation of PCP arrived. All sorts of whacky intravenous meds at that point (May 2006) and I have been recovering since.

I'd lost about 40 pounds by the time I entered hospital. I looked like death warmed over. Spent the summer convalescing and packing in the food. I was eating so much that I spoke little.

It's now October. I've packed on all the weight I lost +10 more pounds, have been working out, but still have moments of tiredness here and there. I just sleep when that happens, where I can. I'm lucky enough to have gone back to school to my schedule is quite flexible - non 9 to 5 deal. I'd say that at this stage, I'm pretty much on top of most health issues, aside from the emotional roller coaster. All in all, things have definitely improved, and in a very short time - just a few months. I feel and look better than I did a year ago at this time.

Offline newt

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  • Posts: 3,885
  • the one and original newt
Re: Will it get better?
« Reply #2 on: October 19, 2006, 04:06:16 PM »
Hey hello

tough time eh?

Before I comment I would like to know, if you care to share, if you felt tired, tired, weak and/or had neuropathy before/after starting meds... (and er, how much you weight, as it happens, would be helpful)

- matt
"The object is to be a well patient, not a good patient"

Offline c69

  • Member
  • Posts: 31
Re: Will it get better?
« Reply #3 on: October 19, 2006, 05:37:13 PM »
To newt:

I get up being tired but am able to work a full week, but the weekend is spent in bed recovering.
So I guess that is better than premed, when the entire week was spent in bed.
Neuropathy issues date from premed but the meds seemed to worsen it. Actually a med switch brought some relief. I dropped the emtriva for abacavir three weeks ago which gave me relief from the day i switched. Maybe I have to be more patient.
I am 72 kg.
I guess it is also about not being able to accept that all of a sudden I feel like 73 instead of 37.
« Last Edit: October 22, 2006, 03:38:06 PM by c69 »
Meds since May 2006, Abacavir, Tenofovir, Reyataz & Norvir.

Offline SoSadTooBad

  • Member
  • Posts: 248
Re: Will it get better?
« Reply #4 on: October 19, 2006, 09:47:42 PM »
It WILL get better - I spent 2005 exhausted, sick all the time and I lost about 30 lbs.  The diagnosis, with a T-cell count of 78, really knocked me on my ass.  That said - 4 months on HAART, and I have gained 10 lbs, my color has come back and I have not had this much energy in 3 years.

There are rough days - not every day is great - don't fight it - listen to your body and rest when you need to.  As the days pass, you will get stronger, look better, and feel a lot fucking better.  Never going to be the old 'normal' again, but the new normal does not suck.

Hang in there!! 

Offline Eldon

  • Member
  • Posts: 2,664
Re: Will it get better?
« Reply #5 on: October 19, 2006, 11:20:24 PM »
Hello C69,

It will get better, it takes time. There could be a number of reasons why you are feeling so tired. It could be either physical or psycological or both. You may want to consider starting a multi-vitamin with your meds as this can be of good help to your system.

As far as your rest is concerned, make it your business to get at least (8) eight hours of sleep each evening. If you are drinking alcohol, caffeine, excessive sugars, you may want to cut back on the consumption as well. It effects your sleep.


Make the BEST of each Day!

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: Will it get better?
« Reply #6 on: October 20, 2006, 04:54:15 AM »
Hey hello

I second what others have said.  It will get better. 

HIV is a big viral infection. It takes time for the body to heal and for the immune system, now it's working again, to deal with the virus & it's after effects properly.  Sleep is good (like after flu). Your response to treatment is very good.

PN wise, you might try some L-acetyl carnitine (Alcar), an amino acid, 1,500 mg 2 x day, which a few studies have shown helps repair the nerve damage caused by some anti-HIV drugs, it may help (gotta be the more costly L-acetyl carnitine, not just the cheaper other types though). Repair can take several months. Now you've changed drugs this may happen on its own.

Another supplement, Alpha-Lipoic Acid 600 to 900 mg daily may help protect nerves/connective tissue from inflammation/further damage.

Personally I would be bold about bombing some ibuprofen or aspirin for a bit if you ache.  Joint/muscle pain is an inflammation, from the virus or possibly Sustiva, and will hopefully pass.  It's just like flu for the virus, and your body will adjust to the Sustiva.

Good luck.

- matt
"The object is to be a well patient, not a good patient"

Offline c69

  • Member
  • Posts: 31
Re: Will it get better?
« Reply #7 on: October 22, 2006, 03:59:03 PM »
I would like to thank everyone for the encouragement and advice, I really needed that. My doc is no help in these matters (as long as the numbers are good he doesn't see a problem). I am already taking multivitamins, and have started both L-carnitine and Lipoic acid some time ago, although not in the dosages Newt recommends so I will up these and see what happens.
Anyway thanks again and I'll keep everyone posted.

C69
Meds since May 2006, Abacavir, Tenofovir, Reyataz & Norvir.

Offline J.R.E.

  • Member
  • Posts: 7,213
  • Joined Dec-2003 Living positive, since 1985.
Re: Will it get better?
« Reply #8 on: October 22, 2006, 07:06:20 PM »
Hello C,

2003 was a difficult year for me. By October of that year, I had lost almost 30 pounds of weight. I was down to 130 pounds. My current weight is 172 pounds. This weight came on quite fast after starting on medication in October of 03. I still continued to work full time. But I certainly knew what my limitations were.

Somewhere around June of 2004, neuropathy started, and it was a struggle to do the job I was hired for. I also realised, that I wouldn't be able to hang on to that job, and do it efficiently.

By October of 2004, Another opening came up at work, and I immediately grabbed it. It was in a totally different department,completely different work. I was lucky that position had opened up, because, if it hadn't, I most likely would not have been able to continue my employment.

So, for now things are going OK, I am still full time, but I have got to really relax on my two days off, so I can get through another week of work. I do get quite tired. Even though my blood test results show that things are ok.

It is very important to know what your limitations are, when working full time. There is no way possible I can do the things I used to do, and still remain upright, later in the day. I know these are things, that you may not like to hear, but you need to be aware of it.

Meantime, your numbers are good, try to feel good about that,Things will take time, you are still in the early stages here. hopefully things will get bettter soon, and hopefully some of the fatigue will lesson some, but part of HIV is unfortunately having  fatigue, and all of us suffer from it in sime degree, some more than others. Try the recommendations, as far as the supplements. Know your limits, and rest when you need to.





Take care-----Ray
« Last Edit: October 22, 2006, 07:09:07 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

 


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