Living Atypically With HIV

[ray_in_texas]

Hello Everyone! I'm new to POZ forums. I had decided to to read through some of the forums here before I chimed in, and in doing so, I've spent the last many hours just reading. The words of encouragement, differences of opinion, understanding, and the many uncertainties have all touched me today. I hope that this "Living With HIV" intro I'm writing may help out someone looking for answers or having uncertainty.

My story seems to be atypical. I was in pain management for spinal compression fractures and inflammation. I was having radiculopathy (numbness, tingling, loss of sensation) in my lower extremities. After a lot of testing, including MRIs, CT scans, and nerve conduction studies, the doctors and neurologists could not figure out why my legs were numb and I was losing sensation and control of most everything below my waist. Finally, the neurologist sat me down and explained all of his findings and came to two conclusions. He could not explain what was going on with all of the data that he had, and he urged me to be tested for HIV. That was in 2010 and it was the year that changed everything for me when I tested positive and my partner of 8 years at the time was negative. I knew when and from where I got HIV. It was in April of 2008. By the time I was diagnosed, my viral load was over 382000. The neurologist was right.

Since that time, I have learned quite a bit about HIV and AIDS, how the medications work, how early detection can prevent problems, done some peer counseling, and applied myself. I never really focused on the common questions like "Do I have to take these meds," or the depression. I focused on getting better, because like my HIV doctor says, "Treating HIV infection is the easy part... now." I remember the first several months of medication. I became a "pro" at vomiting discretely. I would literally be so exhausted that I would fall asleep at any random time. I even fell asleep during an appointment with my Health Department case worker. It took a while to get past the negative side effects of the meds, but eventually I got undetectable with frequent blips here and there, and my CD4 climbed gradually past 500 and beyond.

This is where the really atypical parts come in. Since I was diagnosed with HIV and mostly likely because of damage already done to my immune system or pre-existing conditions, I have been diagnosed with and/or treated for: hla-b5701 genotype (abacavir sensitivity), spinal stenosis, hydromyelia, poly-radiculopathy, incontinence, appendicitis (with ruptured appendix and septicemia), cholecystitis (with cholecystectomy), polycythemia (with phlebotomy), depression/anxiety, latent tuberculosis, congestive heart failure (left ventricle), enlarged left aorta, TIA (mini-strokes), hypertension, hyperlipidemia, GERD, asthma, chronic bronchitis, chronic sinus and respiratory infections, condyloma accuminatum, pill fatigue, and benign cysts/tumors. And now, I'm back in pain management, with HIV associated peripheral neuropathy.

I didn't write all of that for sympathy and I don't expect any. As I said, my experience is not typical for most modern persons who get HIV. There are people worse off than I am.

I guess I wrote all of this because I wanted new-comers to this battle to know that taking a pill or three a day to get to or keep a low viral load really is the easier part of HIV infection, now, and by staying true to that course one can prevent a LOT of problems. I want the Long-Term Survivors to be aware that their very presence here supporting and relaying their experiences gives hope to those with uncertainty and is greatly appreciated.

Every person with HIV will have their own individual experiences, some good, some not so good, but none of it is bad enough in my opinion to give up hope.

[Jim Allen]

Sorry to hear you have been sick and about the pre-existing conditions, I would not call it atypical though lots of people have multiple conditions stemming from HIV damage - treatment delays, pre-existing genetics, life style or bad luck, and aging. 

The combination of conditions of very unfortunate indeed, it must complicate treatment at times but glad to hear you have a positive response and attatuide.

On just the HIV side even taking the last 10 years so much has changed for the newbies today, thankfully.

End of the day, HIV aside I think everyone's health journey in life is different.

Wishing you well.

Jim

Edit: You must be juggling a few meds, just wondering what treatment you are getting for the pain management? Call it personal interest as I have nerve damage (not HIV related)

[ray_in_texas]

Hey Jim,
You're correct, I do juggle a lot of meds. I take gabapentin and naproxen for pain management. I'm currently at 1800mg with gabapentin.

[Jim Allen]

Hey Jim,
You're correct, I do juggle a lot of meds. I take gabapentin and naproxen for pain management. I'm currently at 1800mg with gabapentin.

Taking naproxen myself as well but than combined with pregabalin.
Been finding the naproxen is okay.

Jim

[ray_in_texas]

I do thank you for your replies Jim!

I've moved around all over the board on pain meds. I started originally with Tramadol and Robaxin for 2.5 years. The Tramadol seemed to work at first, but eventually it only gave me vivid hallucinations.  Then, as needed, my primary would prescribe flexeril and many different varieties of hydrocodone or codeine. The last regular dose of hydrocodone was up to 25mg liquid. The Docs all warned against NSAIDS due to the HIV meds and elimination. It's only recently that I returned to naproxen or other NSAIDS. I would burn through hydrocodone very quickly and it is no longer effective for pain management. I also get cortisone epidural injections and the docs are talking about doing nerve blocks. Before going on gabapentin and naproxen I was taking flexeril, tylenol 3, and ativan to prolong the effects.  During hospitalization, they freely give me IV morphine, and it only lasts about 30 minutes before it wears off.

I understand the nerve pain and I really can sympathize with you. Sometimes it is a hit and miss on the meds, but I hope you have found a combination that works good for you.

[Jim Allen]

Funny Tramadol worked for me but it got less effective with time.
Recognize a few of the meds you have taken from my past.

Pain management is hit and miss indeed. Had a few that nearly killed me, and self treatment was an answer for a while . But yes to answer the question.  My current combination is working well, nothing is perfect but it works.  Hope your pain combination treatment is working as well for you if not better.

Jim