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Author Topic: Syphilis, lumbar puncture and advice needed please.  (Read 2492 times)

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Offline beefbud

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  • just some flesh caught in this big broken machine"
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Syphilis, lumbar puncture and advice needed please.
« on: September 25, 2012, 04:36:17 AM »
Hello all,
Quick history co infected 5 years ago with HIV/Syphilis.  Allergy to penicillin so two weeks of Doxycycline cleared the Syphilis infection.  Reactive tests since have been normal.  VL has been UD for as long as treatment started about 4 years now but CD4 has since hovered at 500 % at 30-33

I had since been retested for syphilis every 3-6 months as I didn't want to go through what i went through the last time...and to my surprise, yes, i was surprised, to find i was reactive again with a high titer of 1:256.  My last non reactive test was February of this year.

Almost done with doxycycline round again but now I am thinking that a LP should be done to rule out neurosyphilis?  Do i want it done, HELL NO, it scares the hell out of me.
Also, if this is the case i know i will have to have a desensitization to penicillin which seems relatively simple for the treatment if NS is positive. 

Thoughts, advice...follow up with doc is October 3.

Thanks for the input all.
"first impressions are cheap auditions"

Offline komnaes

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  • Posts: 1,893
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #1 on: September 25, 2012, 05:46:48 AM »
Hey Beefbud, sorry about the news, but lets say I know how you feel.. :P

If you're sure that you were not reinfected (well, on second thought, even if it was a reinfection), your doctor is almost certain to ask you to do a LP. It's indeed a standard procedure in here that any pozzies who got infected with the big pox would be asked to do one.

As to your treatment options, it's always a good idea to rule out neurosyphilis in my opinion. I am glad I did it - and from personal experiences, in hindsight, it wasn't as traumatizing as I thought before my LP, and now knowing how it is done, I won't be worried about doing another at all (not that I look forward to it)..

Best of luck, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #2 on: September 25, 2012, 06:11:47 AM »
Go to the living with section and you will see my very long drawn out thread on the dayuuummm syphilis.... including my experience w/ lumbar puncture.

You may want to consider having it done to rule out neurosyphilis -

That said,
1) the procedure itself is not bad at all ---- anxiety is probably the biggest complaint I had about the actual procedure (so, if you can get past the anxiety - the procedure is a breeze)
2) it is the post lumbar headache that was a BITCH (I can't capitalize it enough) for me. Make sure you remain on your back as much as possible post lumbar - for at least 24 hours..... Also, tell the administering doc that you have had friends who have experienced VERY severe (did I mention VERY severe?) headaches post lumbar that lasted 3-5 days (no relief - and we are talking vomit inducing headaches that sent me back to the ER)..... So, have them give you painkillers....

Had my administering doc done this - given me some painkillers - I would have avoided a trip to the ER - and would have been able to keep the pain in check.

Read through the dayummm syphilis post - as I found out I did not have neuro - and had to get the treatment again - and now we just monitor it (my titers), as I am one of those people who just is not able to completely clear the little bug completely (my latest were 1:2 or 1:4 - can't remember, but low enough that they are considered acceptable).

Send me a PM should you have any questions - and best to you (the dayuummm syphilis is a bitch to deal with).

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline beefbud

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  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #3 on: September 25, 2012, 07:11:53 AM »
Hey there and thanks for the responses.

I actually read through your dayummm syphilis post (thank you for posting it) and was going to post this there but it said that the last response was over 60 days old and to think about making a new post.

I just sent an email to my doc pretty much suggesting getting the LP done, sometimes it seems like I have to make my own treatment suggestions so may as well throw that out there.  If  nothing else it will put me in a better head space which right now isn't great.

I think phildinftlaudy mentioned a level of frustration as your promisicuity isn't nearly what it had been in years before?  I can count on one hand the number of sexual partners since my last test but of course, it only takes one. 

I also read in that thread if the ten day course is needed in the case of NS that you can have it done at home and not in the hospital.  I don't know if that will be an option but id sure as hell prefer that over 10 days in the hospital with a drip going.  Ill jump that hurdle should it arise.

Thanks much for the input, sometimes it just helps to talk to some folks who know where you are and can relate.

"first impressions are cheap auditions"

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #4 on: September 25, 2012, 07:43:12 AM »
Having had neuro, let me chime in and say that the treatment was done at home, I was perfectly ambulatory the whole time (even eventually went out for groceries and the like.)

Whether or not a person can work and stuff really depends on the symptoms of course. Mine were pretty profound, so until my vision and hearing came back I was unable to really leave the apartment - but then, I was pretty much there anyhow because of the neuro.

getting something like an LP is a really tiny price to pay. I lost more to neuro than I can fathom.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline beefbud

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  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #5 on: September 25, 2012, 08:47:14 AM »
Thank you for your input Jk.  It was your response on the other thread about the home treatment that made me feel a bit better if that is needed.
"first impressions are cheap auditions"

Offline WillyWump

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  • Posts: 7,175
  • your ramblings bore Yamaguchi Kitteh
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #6 on: September 25, 2012, 10:20:45 AM »
A LP itself is not bad at all. no pain, no sting, no nothing. Of course I was given Dilaudid during the procedure so perhaps thats why  it was uneventful. I did develop the LP headache afterwards, but was given copious amounts of pain killers and was kept in hospital for a few days. If I were to have to ahve an LP again, I would not bat an eyelash over it.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline darryaz

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  • Posts: 450
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #7 on: September 25, 2012, 11:09:03 AM »
Definitely request (demand?) that you be sedated for the lumbar puncture.  That will eliminate your anxiety and any pain.

Offline lincoln6echo

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  • Posts: 109
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #8 on: September 25, 2012, 03:03:25 PM »
Hi there.
Regarding the LP I've had a couple over the last year, not bc of syphallis but something else. 

THe first one I was really freaked out but it's not as bad as people think they are especially if you are on pain killers prior to the procedure.   

It gets a little tricky if the Dr can't find the right spot in your spine so they start having to do some, "poking around".  I've found it's largely due to the experience of the Dr who's doing it. 

The last one I had was a few mo's ago and it took them 3 Dr's and about 6 different insertions. 

LUCKILY, I was on a morphine drip along with a mondo pain killer.  So i was pretty stoned. 

A couple tips to make things go smoother;

They probably ask you to curl up in a fetal position. That's fine but what makes it awkward is that have to hold your legs in position and keep still.

In my case, I locked my feet into one of the rungs of the stretcher bed and it took all the weight off so I could just relax.  Think sleeping on your side curled up in a ball and being locked in that position. 

The second and most important thing is to ask them to put you on a morphine drip or something else like that if you are allergic.  It really really helps.  After a while I was like, poke away, do whateeeevveeeer you wanna do buddy :) 

I had a headache afterward but it wasn't too bad.  Also, my back was sore but that went away in a few days.  Remember, not only do they have to do the exploratory needle poking to get the fluid out, but they also will give you a series of needles to freeze that part of your back as well. 

good luck.


Offline beefbud

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  • Posts: 117
  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #9 on: October 03, 2012, 05:10:39 PM »
Hey all,
Saw my doc today.  He had no issues with setting up the LP, he is supposed to call me tomorrow after he gets a hold of the people who perform it.   Also have to meet with an allergist to see if i have a "real" penicillin allergy as I honestly don't know being that its never been given to me since childhood.

Thats all for now, thank you all again for your advice and well wishes.
"first impressions are cheap auditions"

Offline WillyWump

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  • Posts: 7,175
  • your ramblings bore Yamaguchi Kitteh
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #10 on: October 03, 2012, 06:04:44 PM »
Also have to meet with an allergist to see if i have a "real" penicillin allergy as I honestly don't know being that its never been given to me since childhood.


hmm, Maybe I should do that also. I havent had penicillin since I was given it when I was 2 and it nearly killed me.  I had a doc once tell me I have probably outgrown it but they never want to give it a try again.

-W
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline noregrets

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  • Posts: 18
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #11 on: October 06, 2012, 03:04:04 PM »
I'm new here & I'll back up what most everyone else here has already said - the LP really isn't bad.  I've had 2 in the past 6 months (the first was non-reactive) & they did a 2nd one a few weeks ago just to 100% rule out Neurosyphilis. 

I got myself all worked up & nervous the first time for nothing.  I wouldn't say it was a pleasant experience (just the thought of needles makes me queasy), but it wasn't bad at all.
Joey

"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." - Dr. Seuss

Diagnosed:  Dec. 15, 2011
Jan. 2012:  CD4 - 584, VL - 104,000
July 2012:  CD4 - 435, VL - 265,000
Sept. 2012:  CD4 - 252, VL - 307,000
Started Atripla:  Oct. 2, 2012
Nov. 2012: CD4 - 563, VL - 8,440
Jan. 2013: CD4 - 540, VL - 436
April 2013: CD4 - 369, VL - 109
July 2013: CD4 - 721, VL - Undetectable (finally!)
Nov. 2013: CD4 - 795, VL - 21
Mar. 2014: CD4 - 759, VL - Undetectable
July 2014: CD4 - 586, VL - Undetectable

Offline beefbud

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  • Posts: 117
  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #12 on: October 17, 2012, 04:57:47 AM »
Had the LP done yesterday afternoon. 
Like all of you said the anxiety leading up to it was far worse than the actual procedure.   They gave me an Atavin? before but honestly i don't think it did anything but i can't say i knew what it was supposed to do anyway. 

Have gotten some preliminary results back so far and they are showing normal, of course the one im most concerned with is still out.  Its nice to have Kaiser as my insurance and access to the results when they are posted, not when the doctor calls. 

Had a consult with an allergist and go to get penicillin tested tomorrow just in case the two week treatment will be necessary.  Hopefully it won't be.

I was anticipating the bad headaches but the most i have is a slight soreness from the puncture site but even that isn't bad, i feel truly lucky for that!

Im really hoping it will just be one more update that there are no signs of NS but if so im ready to get it taken care of and put it behind me.

Have a good one all.
"first impressions are cheap auditions"

Offline beefbud

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  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #13 on: October 20, 2012, 11:31:48 AM »
and I am happy to report that the CSF tests for syphilis can back non reactive and also preliminary skin tests are showing no penicillin allergies, i have still have one more challenge to go through with a small dosage of amoxycyline over a 3 hour period to see if there is any reactions there but that is a very small percentage that it will.

Thanks all for your input and your stories as they all really helped me take care of what should be done and get back to good health.

Dan
"first impressions are cheap auditions"

Offline Ac75088

  • Member
  • Posts: 228
Re: Syphilis, lumbar puncture and advice needed please.
« Reply #14 on: October 21, 2012, 03:59:50 AM »
Glad u got through it ok..My LP was painless but the next few days after we're horrible..Plus I tested positive and had to be hospitalized for 2 weeks
01-12-08 Tested poz cd4 700 vl 8,000
04-25-11 Lowest cd4 count of 415 vl high at 250,000
05-03-11 Started Atripla
05-16-11 Hospitalized and treated for 2 weeks (neurosyphilis)
07-05-11 CD4 count 585 VL 550
10-04-11 CD4 count 700 VL 75
02-03-12 CD4 count 799 VL UD
08-08-12 CD4 count 838 VL UD

 


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