Welcome, Guest. Please login or register.
March 15, 2024, 01:10:39 am

Login with username, password and session length


Members
  • Total Members: 37594
  • Latest: FloBeee
Stats
  • Total Posts: 772732
  • Total Topics: 66292
  • Online Today: 172
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 0
Guests: 169
Total: 169

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: My Labs kinda suck  (Read 15502 times)

0 Members and 1 Guest are viewing this topic.

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
My Labs kinda suck
« on: August 15, 2012, 01:12:03 pm »
OK,  went to I.D. Doc this AM,  they didn't do any lipids this time around so nothing to report on those  ;)

CD4s suck were way up in the 460 range, now down to 344  :-[

so she put my back on the Travada every day instead of every other day
says she suspects that the smaller dose isn't suppressing my virus like it
should be doing  :(

she will re-test & do lipids @ a later date, she thinks it's a blip and wants to find out if it really is or not...

also she put my on Lyrica (Pregabalin(pre gab' a lin) 50mgs tid 3 times a day for neuropahthy  :-\

said if I didn't like it you don't have to take it, but @ least give it a try tho  :-[

and now the proof & labs  :(



"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline wolfter

  • Member
  • Posts: 5,470
Re: My Labs kinda suck
« Reply #1 on: August 15, 2012, 01:43:25 pm »
Was there a viral load test done?  That would have been a better indicator if the other day dosage was still working.  At least I think so.
Being honest is not wronging others, continuing the dishonesty is.

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #2 on: August 15, 2012, 01:47:24 pm »
Look @ the 2nd pic the one with the VL the one w/ HIV Quant & HIV Log
says I have a 2.5 <> log jump and that means a VL of 290 copies :-[
« Last Edit: August 15, 2012, 01:49:22 pm by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline wolfter

  • Member
  • Posts: 5,470
Re: My Labs kinda suck
« Reply #3 on: August 15, 2012, 01:50:27 pm »
Sorry, missed that.  Just take your daily Truvada like the rest of us ;D  You're not that special. ;)  Unless you're stressing about having to take it daily for the rest of your life.
Being honest is not wronging others, continuing the dishonesty is.

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #4 on: August 15, 2012, 02:01:29 pm »
The reason for not taking that much of a dose of the Travada was due to bad kidneys, so I've been on that dose since 2010, now the doc is doing this to see
if it's a blip or if I now need to take the Travada every day.she thinks it's a blip..

but that is not what's troubling me, it's this dam neuropahthy that I've had for the last 12 yrs. kinda makes it real hard to ride my bike & do my work-out routine..
I don't wanna turn into fatty old man  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #5 on: August 15, 2012, 07:11:45 pm »


she will re-test & do lipids @ a later date, she thinks it's a blip and wants to find out if it really is or not...



Hey Dennis,

Did she say what the "later date " was?  If It was me I would want to be retested at least by 9/1/12, if not sooner, seeing that these results were from 8/1/12.

I am assuming that since you had kidney issues, that tests will be done for this also, since you are now on the full dose of truvada.

I think I had one of these detectable viral load numbers, quite a while back, and it went back to undetectable by the next test.  ( which was done within 3 weeks by the way).

Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #6 on: August 15, 2012, 07:20:20 pm »
Yeah Ray, if I'm not mistaken, she said she did want to re-test sometime next month in Sept 2012, and will will call me with my new test results, could be blip she thinks it might be, kinda thur me a curb-ball there, when my VL went so high, don't remember it doing that since 2006  ???  she was just as stumped as I was.....


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #7 on: August 15, 2012, 07:24:48 pm »
Dennis,...
My brain also trying to sort through the logic of this. Wouldn't it have been more logical, to remain on the every other day dose or Truvada, and just be immediately retested?

 If the test come back undetetectable,  after starting on the regular dosing of Truvada, how does one equate whether it was just a lab error, or viral breakthrough?

And if it comes back undetectable, do you still remain on the daily dose of Truvada?

Hope that makes sense.


Ray

Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #8 on: August 15, 2012, 09:01:34 pm »
Good point Ray  ;)  one would certainty hope so, since 2006 that is the way it always was up until 2010, my guess is that she will keep it that way, I'm hoping  ;)


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

  • Member
  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: My Labs kinda suck
« Reply #9 on: August 15, 2012, 09:04:19 pm »
Hey Dennis,

It does look like a blip, but 290 isn't horrible. Remember when undetectable meant less than 400?

I do see Ray's point, but I also know Michelle, whom you are still seeing, right? I would be guided by what she advised and see how it goes.

Are you able to take Ziagen? It might be a good backbone drug (it comes coupled to Epivir and is called Epzicom) to replace the Truvada if it still looks like there might be kidney complications.

Hang in there. I know this can be depressing, but you'll get through it. I have faith in you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #10 on: August 15, 2012, 09:17:02 pm »
Michelle yes, I still see her ( love the new clinic digs ) bigger than the old Truman ST.  ;)

Yeah I remember that ( the good ole days) unfortunaley no on the Ziagen? I already took that for about 5 yrs. and Epzicom she says no ,due to the Ziagen, so if it's not a blip, she says we'll go w/ plan B maybe add some more norivr, some of these newer more re-vamped ARVs I already have resistance too due to taking a older version of them about 10 yrs ago.....

I'm goona see how this all go's and plays out next month  :o


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: My Labs kinda suck
« Reply #11 on: August 16, 2012, 06:14:26 am »
Dennis, I've had neuropathy for years.  I did take Gabapentin, 900 mgs three times a day.  My doctor switched me to Lyrica and I take that twice a day.  It seems to be doing alright.  I still exercise, no need to stop that. 

I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.

Just want you to know you're not alone.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #12 on: August 16, 2012, 08:25:44 am »

I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.



I guess I have been pretty fortunate compared to some of you, when it comes to the neuropathy.

I used to mention this back and forth with Tim ( Moffie) , years ago. The neuropathy pain I experienced, back in 2004, was horrible ! Water coming out of the shower head, felt like nails entering my feet. It lasted several  months, and eventually got less and less.

It was bad enough, that I had to change jobs.  And it still does flare up, from time to time, but never to the point that I am in any kind of intolerable pain.


At it's worst pain level, my doctor ( at that time) gave me about a month's worth of Amitriptyline to try.

I ended up never taking it, because after I found out that it was used as a anti depressant, I kept thinking, why is the doctor giving me this. I wasn't depressed, the problem I was having were in my feet, not my head.  :-\   I never had any issues with sleep etc..    I ended up never taking it, and ended up tossing it.  I certainly didn't want to add another daily pill.

So today,... a very occasional aspirin, is all I take for it.  It's when I am standing or sitting for long periods of time, that it bothers me the most.  If I continue to move, walk, there really isn't a problem.

Somewhere down the road, the doctor was going to prescribe Lyrica, but I told him, I didn't really need it, and as a result, never tried that drug.

Dennis, I hope the Lyrica, gives you some sort of relief.




Ray



 
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #13 on: August 16, 2012, 09:57:49 am »
Dennis, I've had neuropathy for years.  I did take Gabapentin, 900 mgs three times a day.  My doctor switched me to Lyrica and I take that twice a day.  It seems to be doing alright.  I still exercise, no need to stop that. 

I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.

Just want you to know you're not alone.

 :-*


Thanks


DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #14 on: August 16, 2012, 10:05:41 am »
It's the cramping & burning of my legs & feet, also it's that horrible tingley feeling I get when I can't feel my feet, and all they do is just BURN all the way up to my legs kinda hard to walk feeling that way as it's also very painful too :'(
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: My Labs kinda suck
« Reply #15 on: August 16, 2012, 10:13:10 am »
It's the cramping & burning of my legs & feet, also it's that horrible tingley feeling I get when I can't feel my feet, and all they do is just BURN all the way up to my legs kinda hard to walk feeling that way as it's also very painful too :'(

Its a horrible condition isn't it . The thing I dread most is bedtime , its almost like coming face to face with the enemy when I go to the bedroom to sleep .   
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #16 on: August 16, 2012, 04:28:38 pm »
It's been a long & very hard decision, as I've been struggling with wanting to take the Lyrica....
 
So today, I didn't even fill the script, I told the pharmacy not to even bother filling it.....

 I just don't  like the idea of taking more pills everyday, I can just take some aspirin if the neuropahthy get's too bad or give myself a physical time-out :-[

it was a very hard decision for me to make, but I did it,
so wish me luck....

So instead I've decided to try message therapy & some acupuncture.....

I'll be looking into this in my local area....

Discuss? feedback is good, so I'm listening......


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: My Labs kinda suck
« Reply #17 on: August 17, 2012, 03:40:48 am »
I don't know what the fear is about Lyrica.  I take it twice a day with no problem.  I know everyone's different, but it may help. 

Good luck with the massage and acupuncture.  I would love to try those, for reasons beyond just the neuropathy but don't have the cash. 

Years ago at the second treatment (for drug abuse) I was in, they did acupuncture for withdrawal.  It helped tremendously.  I'm sure you'll find some benefit.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #18 on: August 17, 2012, 04:52:34 am »
It's been a long & very hard decision, as I've been struggling with wanting to take the Lyrica....
 
So today, I didn't even fill the script, I told the pharmacy not to even bother filling it.....


it was a very hard decision for me to make, but I did it,
so wish me luck....

So instead I've decided to try message therapy & some acupuncture.....

I'll be looking into this in my local area....

Discuss? feedback is good, so I'm listening......


Hugs

DEN


Dennis,

I support your decision.  I know how tough it is to wrestle with these decisions, but honestly, I haven't seen enough evidence that Lyrica helps much at all.

I posted this a while back in the research forum:

A couple of interesting articles to read:

http://www.medicalnewstoday.com/articles/245032.php


Related article:

http://www.inpharm.com/news/172526/lyrica-fails-diabetes-and-hiv-pain


http://www.thebody.com/content/67521/guinea-pigs-crash-test-dummies-and-hivneuropathy-t.html


Wishing you the best---Ray




Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #19 on: August 17, 2012, 09:47:03 am »
@ Ray, Thanks for the links Ray, I found out a lotta things about the lyrica that I really didn't like just by reading some of that, most of it I already knew about  ;)

also, it has a very high price-tag even w/ my current BCBS Ins. it's kinda pricey for a one month supply, and to top it off it's not even formulary ( Not on the ADAP list for my State)   :'(

I really need to go to the VA,  Ray like you did 2 yrs ago, I'm getting ripped-off by BCBS & Medicare   :-[


@ Betty  the massage and acupuncture, well @ least the massage is doable, and not very pricey @ all  we have a school of massage here in ABQ. I heard that they are very professional w/ this  :)

the acupuncture, that's very pricey and not covered by Ins. or Medicare, so that ain't gonna happen, I checked some of it out locally, and it scared be-jeebus outta
me, I don't wanna end it with HEP C  :-\


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline bear60

  • Member
  • Posts: 4,105
Re: My Labs kinda suck
« Reply #20 on: August 17, 2012, 11:41:08 am »
Massage and acupuncture:  two benefits taken away from us by our local AIDS Service Agency  (Action Aids).  They had the nerve to send Kurt a survey and he gave them an unsatisfactory rating.  Imena really....they can pay those stupid unqualified employees of theirs but not pay for client services.  Burns me up.
Poz Bear Type in Philadelphia

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #21 on: August 17, 2012, 12:38:35 pm »
Massage and acupuncture:  two benefits taken away from us by our local AIDS Service Agency  (Action Aids).  They had the nerve to send Kurt a survey and he gave them an unsatisfactory rating.  Imena really....they can pay those stupid unqualified employees of theirs but not pay for client services.  Burns me up.

Yeah I hear ya Joel, as I don't qualify for a lotta stuff at my local ASO, I'm very sad that some of these programs the did serve the ones who really needed them and benefited by them are slowly being cut

Burns me up too  >:(


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: My Labs kinda suck
« Reply #22 on: August 17, 2012, 04:09:45 pm »
I support your decision.  I know how tough it is to wrestle with these decisions, but honestly, I haven't seen enough evidence that Lyrica helps much at all.

I support Dennis' decision also; hopefully you weren't implying that I"m being an ass.  Lyrica has helped me more than Gabapentin.  I suppose for every negative article there's a positive one.  And the side effects from Lyrica have been a lot  less than Gabapentin.

Dennis, I know acupuncture's not covered.  It sucks.  It really is relaxing, at least what I've experienced.  I believe if you get a reputable agency there shouldn't be a fear of Hep C.  Have there been reports at your agencies there?  That would cause concern.

At the ASO I work at (which I used to be a client at), we've never had either massage or acupuncture.  We barely get funding to keep the agency open at times.  Our money mostly comes from the state on grants, and it's been slashed.  The managers took a paycut so no employees would lose their job. 

But anyway, Dennis, I hope the massage helps.  We have a beauty school here where people take massage and I actually had one done there once.  It didn't help much, as they didn't do deep massage; it was all very light.  Let me know how things go, if you get any relief this way. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: My Labs kinda suck
« Reply #23 on: August 17, 2012, 04:09:51 pm »
Services get cut because you old LTSers stopped dying in significant numbers. Now there are too many people at ASOs wanting more services. Had to stop at some point, I'm afraid.
"I’ve slept with enough men to know that I’m not gay"

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #24 on: August 17, 2012, 07:59:49 pm »
I support Dennis' decision also; hopefully you weren't implying that I"m being an ass. 


Not at all Betty. I never implied that or believe that.  That's ridiculous to even think I May have thought that !


Ray
« Last Edit: August 17, 2012, 08:01:37 pm by J.R.E. »
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline jm1953

  • Member
  • Posts: 295
Re: My Labs kinda suck
« Reply #25 on: August 17, 2012, 11:50:19 pm »
Hey Dennis,

Sometimes a time out is good.  Plus massage and accupunture plus homeopathic medicine can be great.  I too have kidney issues, stage 3, so whatever I take or eat is always under the scrutiny of my kidney doctor.  We all have a myriad of symptoms in many different ways.  I've learned to kind of manage my own health care with the help of my doctors because it seems many of them just have given up.

I hope your neuropathy (sp) gets better.  Eastern medicine might help that too instead of the Lyrica.  Anxious to hear how it all goes.  You deserve all the best life can offer.

Take good care,

Jeff
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: My Labs kinda suck
« Reply #26 on: August 18, 2012, 06:09:54 am »

Not at all Betty. I never implied that or believe that.  That's ridiculous to even think I May have thought that !


Ray

I just don't want to be misunderstood.  I realize that because Lyrica works for me does not mean it's right for everyone.  But I also believe it can't hurt to try, as long as one's totally ready for it.  If there's doubts, it most likely will not work.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Theyer

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
Re: My Labs kinda suck
« Reply #27 on: August 21, 2012, 03:23:47 am »
Dennis , I am currently on a waiting list at my Hospital for what is basically chili treatment.
The area affected is covered in a cream with the ingredients off chili that causes the burning sensation.Then the area is wrapped in cling film and left for an hour.

I have had PN since 1993 with 2 distinct increases in severity after the chemo treatments. Currently the treatment is venlefaxine an antidepressant that reduces the burning/frizzing and sudden sharp pains , fentalyn patches for bone pain and the sense that the ankles are going to snap ,and that the feet are bound. This after now a small amount off walking on hard surfaces flares up breaking throw the regular pain controllers .  Then my ankles to my knees feel as though they are full off toxic sludge ,burning from the inside out. If this does not reduce after a couple off hours I take 50 to 100 mg of morphine sulphate .

So I am hopefull for any treatment that helps, I put up with a lot off pain before this cocktail off pain killers as I was reluctant to use morphine base products however after the end off the first cancer treatment I was desperate to decrease the constant pain and discomfort off then my whole body, the relieve was enormous and really helped my recovery process.

I am in Orkney at the moment I will gather up information about the chili treatment around the 12 Sept when I am back in London for Dental/Jaw treatment.
yours
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #28 on: August 21, 2012, 10:44:57 am »
Thanks Micheal, that chili-treatment sound very interesting, it is certainly something I've never heard of before  :)

Us HIV/AIDS  Dinosaurs, well at least some of us, really have been thur hell and back, so to speak  ;)

like they say, what doesn't kill ya, makes you stronger  ;)


Hugs

DEN  :)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: My Labs kinda suck
« Reply #29 on: August 22, 2012, 09:19:00 am »
[forbidden foray]

Forgive my foray into LTS, but you guys know I got your back and I'm only going to post here when I have to shout at explain the rules to someone or have some relevant information.

That "chilli" treatment has been around for a while and when used medicinally, it's called Capsaicin. It's also used for lingering post-herpatic neuralgia from shingles as well as for PN.

I think there was someone who used to (or maybe still does) post here who has tried it for either PN or post-herpatic pain, but I can't recall his results.  You can get it on prescription and you can also get it over-the-counter. It's in some gels/creams for arthritis relief as well.

[/forbidden foray]
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: My Labs kinda suck
« Reply #30 on: August 22, 2012, 09:53:21 am »
My diabetes doctor recommended capsaicin creme for my foot PN . I have had a painful sensation on my left foot that feels like a rolled up sock even when I'm barefoot , it drives me nuts at night and is very painful . She did add that it works well if you can stand the burning sensation it causes . She told me it works for many of her patients with localized PN foot pain .

I haven't tried it yet because I'm in pain management and it doesn't bother me if I take my medication before bedtime . I would like to hear if anyone else has used this before . 
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline denb45

  • Member
  • Posts: 5,048
  • "1987 Classic Old School POZ+"
Re: My Labs kinda suck
« Reply #31 on: August 22, 2012, 06:25:03 pm »
Capsaicin, Salves, oils and lotions, along with a very good strong handed masseur is well worth a try, I'm all for this idea.......thanks for the tip Ann  ;)


Hugs

DEN
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: My Labs kinda suck
« Reply #32 on: August 23, 2012, 01:25:02 am »
I have had a painful sensation on my left foot that feels like a rolled up sock even when I'm barefoot , it drives me nuts at night and is very painful .


I know that feeling!( although I don't experience that at night) The main thing I'm dealing with are the ankles. As long as the foot pain doesn't increase, I will be able to deal with that.

The ankles are a different story. I can only wear loose fitting/ loose knit socks.  Anything tight, and it feels as though, I have huge rubber bands around my ankles. I usually buy those "diabetic - neuropathy socks. I get those at the Goodwill stores, and they are comfortable and durable. They don't squeeze the ankles.

Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: My Labs kinda suck
« Reply #33 on: August 24, 2012, 05:46:53 am »
Capsaicin is sold everywhere, though I'm not sure about the cost.  I've often wondered how it worked for PN.  If anyone has experience with this, please speak up.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Theyer

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
Re: My Labs kinda suck
« Reply #34 on: August 24, 2012, 04:33:55 pm »
I was asked if I would be part off a group having a controlled application , not 100 per sure but I think one off the Doc,s at my pain control clinic is doing research on there own initiative and not sponsored by the drug company, that's the bit I am unsure off. However I do know its research.

So Betty I will report in when it starts. And lets hope some one else out their adds there experience , it can be the start off Patient research.

A life without PN dreamy thought.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.