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Author Topic: Syphilis  (Read 7020 times)

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Offline PRCR625

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Syphilis
« on: June 10, 2009, 11:33:43 PM »
Hello all,

I have not posted in a while, sorry. Life is so busy!!

My husband was diagnosed + in June 2008. At the same time a RPR test came back positive for syphilis. It was so devastating because we do not know where he contracted HIV or syphilis. The last year has been tough but we are doing well considering. He has been undetectable since starting Atripla in August 2008 and received 3 shots of penicillin to fight the syphilis. His subsequent RPR tests were not non reactive but his numbers were heading down that way.

One month ago we discovered a rash developing on him similar to the rash he got when first diagnosed. After a RPR test it was confirmed his syphilis had returned. His doctor said 2 things could have happened. One, he was reinfected. He has had no sexual contact with anyone since his HIV diagnosis, so we hane ruled that out. Two, the infection was not properly treated the first time around. He does remain undetectable.

We promptly got him into the doctor for another 3 rounds of penicillin. We immediately saw a disappearance of the rash and he felt better as well.

The board of health is recommending he have a spinal tap to test for neuro syphilis. After speaking to his doctor about this she feels his condition does not meet the criteria for neuro syphilis. We do trust her as she has been correct with all the advice and instructions she has given us so far.

Can anyone shed some light on what might be happening to cause a re-occurence? Also, do you agree with the doctor's opinion?

Thank you all in advance for your support!! Just FYI, I had a RPR three weeks ago and it was non reactive.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Syphilis
« Reply #1 on: June 11, 2009, 04:11:56 AM »
Hi PR,

Syphilis can be notoriously difficult to treat when one also has hiv. It is quite possible that your husband's treatment wasn't aggressive enough. Some people need more than three shots - they give you a bum-bag full of antibiotics that are pumped into the body at regular intervals.

Here are three threads which contain a wealth of information and first-hand experiences of treating syphilis (including the bum-bag treatment) in the presence of hiv:

http://forums.poz.com/index.php?topic=12785.0

http://forums.poz.com/index.php?topic=1552.0

http://forums.poz.com/index.php?topic=25251.0

You might also want to read our Syphilis Lesson.

If you have any doubts about the treatment he has received, get a second opinion. Neurosyphilis and tertiary syphilis are both very serious and the possibility of having either or both should be checked out if there is ANY doubt.

Good luck with this and keep us posted.

Ann
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

Online mecch

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  • red pill? or blue pill?
Re: Syphilis
« Reply #2 on: June 11, 2009, 06:59:42 AM »
I am sure there are medical explanations to why syphilis was not treated correctly the first time.

On the otherhand, I dunno, I'm sorry, I also gingerly point out that twice in your post there are serious sexually transmitted diseases combined with - "we don't know how it happened" - so I do hope your husband is honest and you get the syphilis taken care and that's the end of that annoyance. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline PRCR625

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  • Posts: 20
Re: Syphilis
« Reply #3 on: November 20, 2009, 01:06:58 AM »
Greetings to all and Happy Thanksgiving!!!

Just an update, we got my hubby's numbers back today.

CD4's at 746
VL undetectable
RPR Non Reactive ... FINALLY! Hopefully it will stay that way!

That's certainly ALOT to be thankful for!!

Offline PRCR625

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Re: Syphilis
« Reply #4 on: November 30, 2009, 06:47:06 PM »
Hi Ann, (And everyone else)

Hope you had a good holiday!!

I have a question for you. We are still enjoying the good numbers we just received but I don't want to count my chickens before they hatch.

In your opinion, do you think the non-reactive result will stick or flucuate? This syphilis has been tricky so I am trying to gather all the info I can.

Thank you!!

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Syphilis
« Reply #5 on: December 01, 2009, 08:20:44 AM »
Hi PR,

Thank you for the holiday wishes, but I no longer celebrate Thanksgiving in the traditional way. I'm an American, but I have been living on the Isle of Man for nearly 20 years. (It's a tiny little country in the middle of the Irish Sea, aka The Rock. We're sorta-kinda part of the UK, but not really; we've got our own government and laws etc, but the UK government gets to meddle. Don't ask me! Most of the native born Manx don't fully understand the ins and outs of the arrangement either!) :D

I don't have any first-hand experience with syphilis, but I'd hazard a guess that he has a good chance of remaining non-reactive. I'm basing that on the fact that he now has his hiv infection under control and undetectable, and his CD4 count is fantastic. However, he'd probably be prudent to make sure his doctor is checking his syphilis status regularly, at least for a year or two. It's always better to be safe than sorry with things like this.

Good to hear that he most likely has it beat, and congratulations on the great numbers. That must have made for a very thankful Thanksgiving for you both.

Ann
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 PRCR625

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  • Posts: 20
Re: Syphilis
« Reply #6 on: December 01, 2009, 11:39:43 PM »
Thank you Ann,

That sounds like a lovely place to live. I would love to experience a different way of life and it sounds so interesting and inviting over there. You are lucky!

Thanks for your input. I am glad you never had first hand experience with this pesty STD. Not fun at all.
We will absolutely follow up with tests quarterly. I want it gone for good!!

Yes, we have sooooo much to be thankful for. Every day is a gift to us now, it's just unfortunate that HIV made us realize this. Well, live and learn...and move on!!

Best,

PR

Offline PRCR625

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Re: Syphilis
« Reply #7 on: March 01, 2010, 09:52:46 PM »
Back to square one ...

After my husband's non-reactive RPR test in November we were thrilled.

His number's came in today ... CD4's 719. VL not in yet. RPR back up to 1:4. We are so disappointed.

He feels fine and shows no symptoms of reinfection.

Ann - any idea what is going on? The Dr. is recommending a lumbar puncture and now I am scared.

Guess I should'nt have counted my blessings...

Thank you!

Offline Matty the Damned

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Re: Syphilis
« Reply #8 on: March 01, 2010, 10:19:42 PM »
Back to square one ...

After my husband's non-reactive RPR test in November we were thrilled.

His number's came in today ... CD4's 719. VL not in yet. RPR back up to 1:4. We are so disappointed.

He feels fine and shows no symptoms of reinfection.

Ann - any idea what is going on? The Dr. is recommending a lumbar puncture and now I am scared.

Guess I should'nt have counted my blessings...

Thank you!

The RPR of 1/4 is a little concerning following a non-reactive RPR and the lumbar puncture will be to isolate spirochetes (the organism which causes syphilis) in the CSF.

Spirochetes in the CSF can indicate neurosyphilis. Which is Not a Good Thing, but eminently manageable if detected in time.

MtD

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Syphilis
« Reply #9 on: March 01, 2010, 10:49:06 PM »
About a year prior to infection I had stage 2 syph - got two shots of penicillin (one on each cheek)... Then when I came up positive I also showed as having a highRPR so they did the three rounds of two shots each (I call them the cement butt shots)....  I have not had a negative RPR - as of today it is holding at 1:4 - my ID doc says she will check again during my next quarter labs to see if either goes down or stays same --- she says as long as it stays same then no need to worry - just continue to monitor --- in the case of ur bf where it went neg then popped back up -- probably have to go with doc's suggestion --- although i'm sure there are others who may have more experience in this area then i've had ---- i know that i don't ever want to have to get a lumbar puncture, but if it would come down to it, I would have to deal with it, as I have tried to do with each little curve this disease and life's other little conditions throw my way.  You and ur bf definitely have plenty of support here
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 Matty the Damned

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Re: Syphilis
« Reply #10 on: March 01, 2010, 11:10:21 PM »
HIV complicates everything and syphilis is an excellent example of how it does this.

In a patient with with normal immunue function we expect to see the RPR titre decrease four fold over a three month period following the completion of a standard treatment regimen.

So for example a 1/16 titre should have reduced to 1/4 three months after treatment in a patient with normal immune function.

It is not uncommon for a titre of 1/1 (or even 1/2) to persist following treatment even in HIV negative people and provided this doesn't change, treatment is held to be successful. A titre of 1/4 requires additional monitoring no matter what one's HIV status might be.

MtD

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Syphilis
« Reply #11 on: March 02, 2010, 11:24:37 AM »
Hi PR,

Unfortunately, I don't have anything to add to what Matty and Phil have said, but I just wanted to wish you both good luck with this upsetting situation. You must feel so disheartened.

Hang in there and keep working with the doctor.

Hugs,
Ann
xxx
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 PRCR625

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  • Posts: 20
Re: Syphilis
« Reply #12 on: March 05, 2010, 08:21:15 PM »
Thanks everyone!!

I really appreciate all the info.

My husband's #'s just came in: CD4's @ 719 and still undetectable. That's good news!! He feels great he says.

We scheduled the spinal tap for next Friday. Not taking any chances...we want this crap gone!!

I'll keep you posted. We are very disheartened but I refuse to give up hope. We are successfully and happily living with HIV. We will handle this ... (hopefully).

Love to all...PR

 


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