Author Topic: Great, so now I have syphilis... any advice? (Read 11995 times)

survivor703 · « **on:** November 19, 2012, 11:44:15 am »

Hello all... I had been feeling a lot of weird symptoms lately, which I thought were to HIV "disease progression." As it turns out, I actually have syphilis, and I'm scared shitless about it. I've heard that HIV can complicate treating everything.

Does anyone here have any experience with getting syphilis treated while being poz? What should I be expecting? I'm going get a shot today.

Thanks

Results: REACTIVE (TITER 1:2048)

ad2san · « **Reply #1 on:** November 19, 2012, 11:49:36 am »

hi there, S**** ; after the shot you'll be fine. Using condoms help avoiding this kind of surprises ....

Take care.

Cheers

thunter34 · « **Reply #2 on:** November 19, 2012, 12:34:12 pm »

I had both at time of diagnosis. Expect some BIG shots in your cheeks and then for your ass to be sore for a few days.

And not the good kind of sore.

Buckmark · « **Reply #3 on:** November 19, 2012, 12:43:58 pm »

Syphilis is treatable, but you have to be aggressive with it. You can look at this thread from member phildnftlaudy to see what he went through, though I wouldn't expect his experience is "typical". Still, don't delay -- go get treatment, and keep following up.

http://forums.poz.com/index.php?topic=38584.0

survivor703 · « **Reply #4 on:** November 19, 2012, 02:29:05 pm »

thanks for the advice everyone... I go in tomorrow for the shot(s?). I just wonder how concerned I should be that my titer level is so high 1:2048.

thunter34 · « **Reply #5 on:** November 19, 2012, 03:14:34 pm »

Quote from: survivor703 on November 19, 2012, 02:29:05 pm

thanks for the advice everyone... I go in tomorrow for the shot(s?). I just wonder how concerned I should be that my titer level is so high 1:2048.

I can't speak for exact titer levels, but my own had to be pretty damn high. My hair was falling out, and I was getting blisters and such. I got some around my legs that made it almost impossible for me to sit down.

It was not pretty.

phildinftlaudy · « **Reply #6 on:** November 19, 2012, 04:32:00 pm »

Sorry to here about the syphilis...
The treatment is pretty effective for most people - just be ready for three weeks of shots....
When I originally had it - one shot in each butt cheek (2 total shots) each time for three weeks
When it recurred - which can happen, particularly with us pozzies, it was one high dose shot per week for 3 weeks...

In regards to the high titer - the shots should bring it down pretty quickly. Do be prepared that after the first shot, you may not feel well a few hours later... my doctor explained this to me by saying that as the antibiotic takes hold, the syphilis buggers start basically rupturing... which causes an increase flow of them in the sytem - thereby, making you feel pretty crappy...... it passes fairly quick - and the layout I gave above is an extremely extremely basic explanation of what she told me happens...

Also, the first go round I had with the syphilis - during the initial infection - when my titers were sky high - I actually lost hearing in my left ear - however, after the treatments, the hearing came mostly back...

I'm sure you probably already found the thread I did where I laid out my "fun" syphilis journey.... mine is the type that has to be monitored every 3 months - because my titer doesn't ever want to completely go down to where it needs to be... but it is considered "acceptable"...... my doc assures me that I shouldn't see any long term effects and I have had LP, etc done with no indications of neurosyph or cadiosyph...

Just follow doctor recommendations.... and feel free to post any questions you have - I will answer w/ any info I can share and I'm sure others will do the same.

-Phil

jkinatl2 · « **Reply #7 on:** November 19, 2012, 05:06:42 pm »

Quote from: ad2san on November 19, 2012, 11:49:36 am

hi there, S**** ; after the shot you'll be fine. Using condoms help avoiding this kind of surprises ....

Take care.

Cheers

Syphilis can outwit a condom, as a chancre can easily be on the scrotum, the inner thigh, even inside the mouth.And as you surely know, syphilis only requires skin contact with a chancre to infect.

beefbud · « **Reply #8 on:** November 20, 2012, 08:39:23 am »

Get it taken care of all will be fine.
Just went through it as well. Everyone has pretty much filled you on what to expect and as "Phild" has said you may get sick after your first shot its called the "Herxheimer reaction"...if you're curious just do a google search. Some don't get it others do but ultimately it just means that the bacteria is dying off.

Be thankful you found out before it got to later stages.
All will be fine and I wish you well.

survivor703 · « **Reply #9 on:** November 20, 2012, 09:40:21 am »

Okay, thanks guys for all the great info. I love how supportive you all are... I've looked up the Herxheimer reaction, and boy that looks like nothing to play with. I have to get my shot(s) @ 2pm today and then return to work by 2:30. I hope that I'm not tripping out at work, lol.

But yeah, like yal said, I was told by my ID doc that I'd need 3 shots over the course of 3 weeks. So I'll keep you guys updated as to what goes on.

Nervously yours,
survivor

Raf · « **Reply #10 on:** November 20, 2012, 10:05:08 am »

Quote from: jkinatl2 on November 19, 2012, 05:06:42 pm

Syphilis can outwit a condom, as a chancre can easily be on the scrotum, the inner thigh, even inside the mouth.And as you surely know, syphilis only requires skin contact with a chancre to infect.

Yikes, I didn't know that. Makes me more paranoid than I am already.

Ann · « **Reply #11 on:** November 20, 2012, 10:09:14 am »

Survivor, you may want to let your doctor know that you plan on going straight back to work following your shot. He may either want you to give work a miss for the day and/or he may want to give you an anti-inflammatory to take as a preventative measure. The anti-inflammatory may not completely stop the Herxheimer reaction from happening, but it may make it more bearable if it does.

Good luck!

Ann · « **Reply #12 on:** November 20, 2012, 10:12:31 am »

Quote from: Raf on November 20, 2012, 10:05:08 am

Yikes, I didn't know that. Makes me more paranoid than I am already.

That's one of the reason syphilis rates continue to climb. All it takes is skin-to-skin contact with a chancre and they're not always in noticeable places. Also, syphilis chancres are painless, so unless you see it on your body, you most likely won't even know it's there. You can even have a chancre in your mouth and not notice it.

Anyone who is sexually active should be regularly screened for syphilis, particularly those of us who are poz, because syphilis can be a tenacious little bugger when you're poz.

Jeff G · « **Reply #13 on:** November 20, 2012, 10:12:55 am »

Quote from: survivor703 on November 20, 2012, 09:40:21 am

Okay, thanks guys for all the great info. I love how supportive you all are... I've looked up the Herxheimer reaction, and boy that looks like nothing to play with. I have to get my shot(s) @ 2pm today and then return to work by 2:30. I hope that I'm not tripping out at work, lol.

But yeah, like yal said, I was told by my ID doc that I'd need 3 shots over the course of 3 weeks. So I'll keep you guys updated as to what goes on.

Nervously yours,
survivor

If I were you I would arrange to have the afternoon off after the shot just to be on the safe side . I had that reaction you read about when I had the big S and I know that if you have half the reaction I had you wouldn't want to be at work . I'm not trying to scare you and you may not have the same experience but if I were you , the day off is the way to go if you can swing it . Good Luck !

survivor703 · « **Reply #14 on:** November 20, 2012, 11:12:38 am »

Hmmm, good advice. Here's the thing, I just took my last 80 hours of PTO for my 2 week vacation which starts next week. So, taking the day off might not be a prudent thing, but maybe I can reschedule my appointment for 4pm. They're pretty good about that at Kaiser. If that's the case, I can just leave a little early. I'll still be in traffic for 1.5 hours though. Long commute. Dammed if I do, dammed if I don't. lol.

I will update tonight though just to share my experience.

Thanks Everyone

Jeff G · « **Reply #15 on:** November 20, 2012, 11:17:56 am »

Maybe a note from the doctor would do the trick ? . Most company's honor an excused doctors visit if one has a doctors recommendation to take it easy for the day .

survivor703 · « **Reply #16 on:** November 20, 2012, 03:42:45 pm »

well, I'm back in the office... had my 1st shot if three in the rear end. and yes, it's a painful shot. Fortunately I haven't had a reaction so far. I feel just fine... so we shall see. I'll keep you all posted.

XO

Jeff G · « **Reply #17 on:** November 20, 2012, 04:26:47 pm »

Quote from: survivor703 on November 20, 2012, 03:42:45 pm

well, I'm back in the office... had my 1st shot if three in the rear end. and yes, it's a painful shot. Fortunately I haven't had a reaction so far. I feel just fine... so we shall see. I'll keep you all posted.

XO

Good for you ! . I was being a worry well for you and I'm happy to hear there are only minor side effects .

I was concerned for you out of what I went through , so when I read you were going back to work afterwards it got the best of me LOL .

survivor703 · « **Reply #18 on:** November 20, 2012, 05:05:58 pm »

aww, thanks for your concern jg. I'm still fine -- actually NO side effects two hours after the shot... Now I'm about to hit rush our traffic for an hour and a half. Yay! lol.

Raf · « **Reply #19 on:** November 20, 2012, 07:32:15 pm »

Quote from: Ann on November 20, 2012, 10:12:31 am

That's one of the reason syphilis rates continue to climb. All it takes is skin-to-skin contact with a chancre and they're not always in noticeable places. Also, syphilis chancres are painless, so unless you see it on your body, you most likely won't even know it's there. You can even have a chancre in your mouth and not notice it.

Anyone who is sexually active should be regularly screened for syphilis, particularly those of us who are poz, because syphilis can be a tenacious little bugger when you're poz.

yikes x 2 . This will be a HOT topic with my doc next year. I don't remember for the life of me if I was screened for syphilis when I was diagnosed (too busy dealing with teh aids OIs in that time).

This will be fun, if I result positive, I suppose it will be an OLD infection since I stopped having sex since my Dx back in '08 , and I'll have all sorts of fun things including lumbar punctures, I believe. And people still ask me why I'm paranoid with sex, to the point of not having it.

survivor703 · « **Reply #20 on:** November 20, 2012, 09:17:32 pm »

yeah Raf, get it checked out.

UPDATE: I'm home now. It's about 6 hours after my shot, and I feel like I have chills, and I feel slightly jittery. Gonna go lay down. I took a fish oil pill an hour ago.

TTYL

mikeyb39 · « **Reply #21 on:** November 20, 2012, 09:29:20 pm »

hope you feel better soon...get some rest for sure.

Ann · « **Reply #22 on:** November 21, 2012, 07:40:14 am »

Quote from: survivor703 on November 20, 2012, 05:05:58 pm

aww, thanks for your concern jg. I'm still fine -- actually NO side effects two hours after the shot... Now I'm about to hit rush our traffic for an hour and a half. Yay! lol.

Good to hear - the reaction usually happens within two hours. Hope you had an uneventful trip home. May your sore buttocks feel better soon!

Quote from: Raf on November 20, 2012, 07:32:15 pm

yikes x 2 . This will be a HOT topic with my doc next year. I don't remember for the life of me if I was screened for syphilis when I was diagnosed (too busy dealing with teh aids OIs in that time).

If your doctor knows his stuff, he would have tested you for syphilis when you were first diagnosed - they usually test you for pretty much everything under the sun during the first few appointments. It's a simple blood test, so he may not have mentioned testing you.

But yes, DO ask him about it. Even if you were tested at diagnosis, it wouldn't hurt to be screened again anyway because after all, it's just another vial of blood taken with the rest of your labs. It's always best to err on the side of caution with these things. Good luck!

On a side note... at one point my doctor re-tested me for syphilis because I'd developed a rash on the palms of my hands and soles of my feet - a hallmark of secondary syphilis. The result was negative. It turned out I was having a sensitivity reaction (not quite an allergic reaction) to over-use of an athlete's foot cream. I backed off on the cream for a while and the rash went away and never returned.

My partner and I (who have the same doctor) are screened once a year for syphilis as a matter of course and we've always had negative results. The retest I had due to the rash was done about six months (instead of a year) after my last yearly test.

The first time I was ever tested for syphilis was when I applied for a marriage license in NYC in 1984 - it was a requirement for obtaining the license and if you tested positive, you had to be treated and cleared before the license would be granted. Does anyone know if they still do that?

edited to add...

Oops! I somehow missed this bit...

Quote from: survivor703 on November 20, 2012, 09:17:32 pm

UPDATE: I'm home now. It's about 6 hours after my shot, and I feel like I have chills, and I feel slightly jittery. Gonna go lay down. I took a fish oil pill an hour ago.

I hope you took an anti-inflammatory (like advil or paracetamol) before you went to go lie down. Did you ask your doctor about this when you had the shot? Anyway, hope you're feeling better today.

survivor703 · « **Reply #23 on:** November 21, 2012, 12:02:40 pm »

Hey Ann,

Thanks for the input. I did have an uneventful ride home thankfully, except for seeing an upside down 18 wheeler on the beltway! I hope he was alright, lol.

But when I got home, I did feel very tired and sluggish, jittery, felt like my heart beat was irregular, slightly light headed, and I had chills, and maybe a low grade fever. And it sucked, cuz I had to stay up and do phase one of the thanksgiving dinner preparations.

But I eventually made it to bed around 1am, and I slept like a baby. Was back up at 6am, and felt well rested. I think all the symptoms are gone. The sore throat that I've had for the last 3 weeks along with the sudden joint pain is still lingering. So hopefully that was caused by the syphilis and will subside soon.

The nurse told me since this was my first time taking penicillin that I wouldn't have a reaction because I'm being sensitized to it. But the second time, I might feel something. So next Tuesday we shall see.

My dude is going get checked out by his doctor on Friday. Hopefully they will just give him the shot and not test him for it. I really don't feel like playing the blame game (who got it from where? etc...)

Anyway, happy thanksgiving everyone, and thanks for all the helpful info.

LiveWithIt · « **Reply #24 on:** November 21, 2012, 01:16:48 pm »

You are lucky you can get a shot. I was allergic once to Amoxyicillin and was told not to take Penecillin. Instead I had to take Doxycycline which is twice a day for 30 days. Can't be exposed to sunlight, have to sit up for 30 minutes after taking it and no drinking for 30 days. Also no dairy 2 hours before or after taking in. I've read that most people who had a reaction to Penecillin either won't be after 10 years or it was a false positive reaction so I'd much rather take a few shots.

Newguy · « **Reply #25 on:** November 29, 2012, 05:46:13 pm »

The shots should work just fine although your titre is extremely high. When was your last syphilis test? I would strongly suggest that if you choose to be risky make sure you get monthly tests. Syphilis treated at the primary stage HIV poz or not usually is VERY VERY easy one shot that is it. But if you let it go for too long you can have serious problems.

In conclusion, if you decide to go natural make sure you get tested on a regular basis. I always get syphilis testing with my regular blood work, sometimes even once per month. Actually I get the full the head toe probably once per month. It is not my fault I have a voracious appetite for sex, God made me this way!

rjoh · « **Reply #26 on:** December 13, 2012, 09:13:14 pm »

Great. Just got a call from the ID office, and I have a positive reaction to syphilis also. I go in tomorrow for round one of the 3 week shots.

I don't remember any chancre anyplace, but about a month ago, I did notice small spots on the my palms....nothing on the feet....but an occasional sore throat (no trouble swallowing, but the back of the mouth.....nothing on the body or feet.

My VL had been undetectable for several months and the CD4 count was up to around 525. Three months ago, the VL was 25 and the CD4 remained over 500. Earlier this week, I got the most recent results,the VL was at 21, the CD4 down to 363. But my ID doc said the percentage increased to 28. Another visit to Nurse Dracula and the call from the ID doc's office this morning with the syphilis test results.

Could this be the reason for the drop in CD3s and the stagnation of the VL around 20 or so?

Regardless.....looks like I'll be joining the sore butt club in the morning.......sigh.....

beefbud · « **Reply #27 on:** December 19, 2012, 06:05:34 am »

hi rjoh,
My T's have dropped both times when i was dealing with syphilis...oddly enough the rebound after treatment was dramatic...like a climb in two to three hundred. Syphilis also really messed with my liver enzymes.

You have probably already started treatment and it will take some time but you should be good.

Take Care,
Dan

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Author Topic: Great, so now I have syphilis... any advice? (Read 11995 times)