Avatar universal

Syphilis Nightmare

Hello, I am new to this forum, but looks like a lot of others have gotten help from it so I wanted to give it a shot. I have been going on about a year and a half with a hell of a battle with syphilis. It doesn't seem to get the attention it once did, and therefore getting answers has been difficulty. Let me start from the beginning.

I was in a relationship for 5 years, which I thought was monogamous. Needless to say, my now EX was not as committed as I was and transmitted Syphilis to me, that was in 2011.  I did not know it at the time, and I had very little signs or symptoms (thought the chancre was an ingrown hair). After we broke up (late 2012) I went and got tested for all STD's clear of everything, except for Syphilis. My titer at the time was 1:32Therefore in January of 2013, I was treated with doxycycline for a month (I was thought to be allergic to Penicillin, more on that later). I went back after that treatment, and the titer was 1:16, doctor was happy with that and said it should go down further. Due to my negligence (and the doctors) I waited about 9 months to get tested again to see how the treatment went. It was still at 1:16. This was a blow to me, thought i had put this behind me. This brings me to winter (current) 2013 - 2014.

The doctor then wanted me to go to an allergist to see if I could take penicillin instead since that is the recommended treatment. Come to find out, i was not allergic to penicillin any longer, and so began the three week injections of penicillin at the hospital. The last injection being January 27. I then got tested two weeks later, and went to the doctors again where my result was 1:32!!!! I almost broke down, i felt all those injections were for nothing. The doctor also asked if I had been tested for HIV, because treating persons for Syphilis who have HIV is more difficult. To answer him, I have not been sexually active since August of 2013, and I had a Western Blot HIV test done in November (negative) and also, just to be safe went and had a rapid HIV test don after this doctor visit (also negative) According to the doctor, he more so blamed this the technician who ran the titer, and that he was not as concerned. Easy for him to say, its not his body. So, I then decided to go get a second opinion.

Luckily, in Boston we have Fenway Health Center which specializes with the Gay community so it was very welcoming. I went there, explained my story to them etc, and they seemed to be really into being more proactive and doing any treatment necessary. They tested me again, since it had been a month since the last injection. I got the results today 1:16. Another bundle of joyful news I was able to receive. Needless to say, I was devastated. The recommendation from Fenway Health was since the levels did not go up, that I should wait 3 months to get tested again.

I feel like I have been at this 1:16 level for quite some time, and it worries me to no end. I have also not had a lumbar done, and I have brought it up to both of these doctors, and neither find it necessary. My first doctor also said I may be sero non responsive, and my titer level will never go down. But I have researched, and 1:16 does not appear to be a safe level to stay at, and from what ive read indicates that the infection is still present.

Basically, I dont know what to do, the worry is controlling my life, and waiting 3 months seems to be putting off something that is very dangerous. I am not sure what I should do next. If anyone can help answer some questions, it would be great.

1. Has there ever been cases that Syphilis could not be cured? Ive google it a million times, and everything says its completely curable. So what is my deal?!
2. If you were me, what would you do next?
3. Should I get a lumbar?
4. Is it really healthy to be at this 1:16 level for this period of time? After the doxy and pen injections is it still wreaking havoc on my body?

I guess i just dont know what to do next :( any direction would be great. The things that worry me most is obviously it affecting my brain, and also my heart. I lost my father to a heart attack at a very young age, and I know that in some cases syphilis can cause heart issues.

I hope to hear from anyone soon.
13 Responses
Avatar universal
1. Not to my knowledge
2. I would probably insist with the doctors to check the cerebral spinal fluid for signs of Syphilis infection just in case.
3. I would in your shoes.
4. Depends.

- Doxycycline is efficient in eliminating Syphilis. I developed a small light rash in the trunk area in June last year (2013) which was there for months. I did a mycological analysis of the rash to see what it might be, but nothing problematic was indicated.
It wasn't until the rash spread through my arms, torso and legs (my soles and palms were left intact though) that I started to get worried.
So I went to the dermatologist a few months later (I didn't think it was necessarily anything serious and was otherwise occupied) and she suggested a Syphilis test, which turned out to be positive.
My RPR was 1:32.
I received the Doxycycline treatment: 100 mg, 2x per day (each capsule 12 hours apart) for 14 days.
The rash started to disappear mid treatment and effectively dispersed completely a few week after the treatment was over.
This dosage and duration are recommended for secondary stage Syphilis infection like mine apparently was.
Your dosage was probably the same (100mg, 2x day) only it lasted for 28 days (which is recommended for patients who have a Syphilis infection that lasted longer than 1 year in duration).

I have a follow up blood test next Friday and an examination of the test results a week after that (they have a symposium apparently, so they can't see me sooner).

I followed my prescription to the letter, didn't miss a dose... and I also didn't usually eat anything 2 hours before and 2 hours after taking the Doxycycline pill.
Did you by any chance miss a dose or take Doxycycline with some foods that might have lowered its effectiveness (although I don't think any foods were specifically mentioned to do this in case of Doxy).
Doxy is considered very effective for Syphilis, but penicillin is preferred due to potential adherence problems (such as missing doses, etc.).

Treatment is deemed successful/effective if a 4 fold drop in titer count was observed on a blood test which is usually done about 3 months after treatment.
Considering you waited for 9 months after the first set of tests post treatment (which you didn't mention when they took place), it would appear that Doxy for some reason was not effective or someone messed up the test results.

Since you took Penicillin shots (was it 1 intramuscular shot every week for 3 weeks in a row?), and the RPR showed again a reduction to 1:16 only a month after treatment, it might be indicative of a good thing.
Its possible the lab made an error and that the 1:32 test you got 2 weeks after your third Penicillin shot was faulty (especially when later on, you tested 1:16), but I'm not sure how likely that is (then again, it wouldn't surprise me if they were careless).

As I said, it takes at least 3 months to observe a 4 fold drop in titer counts.

So... if I was in your shoes, I would ask the doctors to check the spinal fluid  just in case due to previously fluctuating test results (be a bit of a nag on this one if they demonstrate to be a bit more thick headed because, after all, we are talking about your health).

I was concerned for a potential Neurosyphilis infection in my case because sometime during Doxy treatment I started seeing some minor light balls that travel along the edge of my vision on the left eye when I would blink.
The effect lasts a few seconds and would appear on rare occasions mainly if there would be a change in light intensity (I don't experience any halo effects or blurring of the vision - my eyes are just as they were before, except for this minor addition - though I do have a problem with my eyes in the sense that I have a lower vision ever since I was a kid and that I mainly see closeups but not in the distance - so these rare light bulbs could be a symptom of that - at any rate I read about this issue and it would appear it has to do with the eye fluid which seems to match and both the dermatologist and the optician said the same).
I went to the dermatologist again just in case and told her about this, but she told me that even though I did came in during a later secondary stage, we still caught it on time because the infection apparently lasted less than 1 year (which at least appears to be indicative of a successful treatment since the rash DID disappear).
Although I do recall reading that Doxycycline can cause sensitivity to light. So its possible that a reaction occurred, or it was highly coincidental and just a natural progression of the eye problem I had since I was a kid (I did start taking a lot of vitamins over the past month after doing proper research on potencies and correct forms, and the eye issue (if you can even call it that) has reduced.
At any rate, I will know more after the blood test is done and have my followup examination to check the test results - but I do think there's reason to be more optimistic as well (since she also noticed the rash went away).

I also mentioned to her I read about cases where Neurosyphilis did develop during the secondary stage, but she told me that this was in extremely rare situations that were highly specific, and that Neurosyphilis usually occurs if its not been treated after 5 or 10 years - and that we shouldn't be searching for a needle in a haystack (probably correct on this one, but its not her health that's potentially on the line, besides, we don't know if the T.Pallidum bacterium underwent certain changes in all these years and might progress a bit faster in some people).

As I said, if I was in your position, I would probably insist on checking the spinal fluid for signs of Syphilis infection just in case due to previously fluctuating test results you had.

Also... you never mentioned if you notified your ex boyfriend about Syphilis.
Regardless of how you may feel about him, I recommend you get in touch with him however you can and have him get himself tested and treated (unless he already has).
And in case he didn't, tell him  to also do a spinal fluid check just in case to check for signs of Neurosyphilis.
Also notify him to get in touch with all his sexual partners over the past years and have themselves get tested.

Btw... did you not experience a body rash while in secondary stage?
A chancre appears in the first stage, while the rash usually appears in the secondary stage.
Avatar universal
To answer your questions. When I got the positive result I called my Ex and had him get tested, since I was 99% sure he was the person who gave it to me. Though my ex is not my favorite person, I tried to be as responsible as I could after the diagnosis.

As for when I took the Doxy, I followed it as directed (when it comes to this stuff I am very serious about it.) I never missed a dose etc. And the penicillin injections were 2 intramuscular shots every week for 3 weeks in a row.

I am going to definitely push for the lumbar, i think its the best to rule out nuero. I have not noticed any signs, and if I did it would probably be me justifying regular things as being attributed to it.

I also never got a rash, that I know of. I really had little to no secondary symptoms, which is why I never suspected the infection. I guess its just been discouraging not seeing the levels go down after all of this work, the doxy and the pen. I know a month may be too soon, but I am chomping at the bit to move on.

Let me know how your retest goes, I hope you have an easier time than I have. I will let you know how my situation progresses.
Avatar universal
As I said, I tried being responsible as much as possible myself and contacted effectively everyone I had sex with in 2013 (probably an overkill but I wanted to be on the safe side).

And, there's reason to be relatively optimistic since the side-effects I had did go away during and after treatment.

I never noticed a chancre... probably because mine was in my anus.
But I DID notice the rash, so at least I had something to go on, or at least my dermatologist did.

Makes you wonder how many other people have no symptoms either during the first or secondary stages...
Asymptomatic but still can infect others.

I will let you know how my follow up tests come along.
I've also been supplementing over the past month with Vitamin D3 10 000 IU daily (actually 20 000 IU daily), Astaxanthin 12 mg, Zinc Picolinate 50mg, Copper Sebacate 6 to 9 mg, and ADAM men's multivitamin from Now Foods.

I also ordered Nigella Sativa seeds and Vitamin C in heavy concentration.
Both are excellent anti-bacterials ... I had the Vit C ordered because the multivitamin only has about 250mg of it.
Avatar universal
Are those supplements assistive to your treatment? Something I should look into possibly. It has been a discouraging journey for me, and also feel very isolated because of it.

When I got my results, the Center for Disease Control meets with me and they inform the partners I had possibly exposed, which was very comforting. And it is extremely confidential.

It has been hard to find anyone to relate with about this, so this is comforting. Thanks for your responses.
Avatar universal
Well, I had to inform all my sexual partners myself.
Its actually easier that way, and I didn't mind doing that.

As for the supplements... well, the main reason I got them was because I noticed that my vitamin levels were not really good.
So I got to work to research proper vitamin supplement forms which were demonstrated in peer reviewed studies to produce desirable effects, and got the ones above.
I only neglected Vitamin C in large doses the first time, hence why I wanted to get it as an extra (in addition to Nigella Sativa).

As for whether its assistive to my treatment...
I wouldn't say that because my treatment was done for almost 3 months now.
Although... I guess on some level its possible that balancing my vitamin levels (or bringing them up into the above than healthy range) could definitely assist my body in becoming far more resistant to future infections (STD's included).
Remember that we can be exposed to nearly anything, but not necessarily get infected with something.
Whether one gets infected or not depends on their immune system.
For example, a friend of mine who had sex with me while I was in secondary stage, we did bare sex and he penetrated me, and he didn't get infected.
He's more focusing on vitamins and mineral supplementation as well, so I started researching to see the scientific point of view, and there seems to be a pretty good connection on that part.

Avatar universal
So. Update on this. Went to dr first week of June 2014, titer down to 1:8 (yay). Had other blood work done first week of July and the did a titer again , it was at 1:16.

I am at my wits end! Dr reassured me that the tests are tech dependent and that we will have to test again in a few months.  This is going on almost 2 years. I'm losing hope here.
Avatar universal
You have been more than adequuately treated for syphilis, and yet your syphilis RPR (or VDRL) blood test titer remains positive at the modest level of 1:8 to 1:16.  That means one of three things:

1) You are serofast -- i.e. one of those fairly rare persons whose RPR/VDRL remains positive despite successful treatment.  This is the most likely possibility.  Being serofast is harmless and may persist for life.  In some cases, serofast results indicate an underlying immune system problem; if not done, you should talk to your doctor about being evaluated for lupus, rheumatoid arthritis, and other autoimmune conditions.

2) Repeated reinfection -- but from your story, this seems very unlikely.

3) Treatment for syphilis has failed and you still are infected.  This can occur if an active syphilis infection is lurking in the central nervous system, where antibiotics (especially doxycycline) do not penetrate well.  By now you should have had a lumbar puncture (spinal tap) to examine your spinal fluid to be sure it is clear of all evidence of syphilis.  Your intitial posts says you aware of this, but you don't mention it being done.  That's your obvious next step.  It's extremely important:  if you do have asymptomatic neurosyphilis, it can have horrible outcomes -- stroke, blindness, dementia and death to name the main ones.

By the way, the chance you have asymptomatic neurosyphilis is way higher if you also have HIV.  You don't mention HIV status -- but since two thrids of syphilis in MSM occurs in those infected with HIV, it's a potentially seriou issue.  What is your HIV status?  (If not tested recently for sure do it NOW!)

Finally, your various herbal treatments, health foods, vitamins, etc will make absolutely no difference.  Don't waste your money, and don't let reliance on such hocus pocus delay your eventual spinal tap.  Every day you don't do it is another day when you could wake up blind, paralyzed, or otherwise seriously disabled.

In summary, I don't know all the details that may be important.  But from the information provided, you are playing with fire and I fear a very bad outcome if you don't act promptly and appropriately.
Avatar universal
I had an HIV test June 6th of this year, negative. My doctor did not warrant a lumbar. She assessed me in house and did some motor skills tests etc, and thought the 3 pen injections were enough. She recommended we wait up to a year for levels to go down.

I am just discouraged by the fluctuation. The numbers have never gone above my initial 1:32 but stays roughly at the 1:16. I will be going to get another rpr done in September. Hopefully with better results. After that I may demand further treatment, possibly intravenous.
Avatar universal
Your doctor is mistaken:  regardless of your varying titers (in fact, because of them) you definitley need the spinal fluid exam.  You are taking a large risk, maybe a life threatening one, by not having it done. I suspect your doctor is not an infectious disease or STD expert.  I recommend consultation with such an expert.  Soon.
Avatar universal
Reading your post, I wanted to add a link that may convince you to push for a test and follow-up tests for nuerosyphilis. http://www.nejm.org/doi/full/10.1056/NEJM194812302392701
It strongly suggests (despite the common assumptions to check for uero even in primary, and certainly in secondary stage, where you may have yet symptoms but it has 16 to 48 percent chance to develop!  
Avatar universal
Is your infectious disease doctor supposed to check your titer lever
if you have had syphliss everytime she takes labs?
Avatar universal
Start your own thread
Avatar universal
I know this is a really old thread and I hope everything worked out for you. I'm going through the same thing now and it's depressing me did your levels ever lower or go away? I tested positive the end of January my numbers were 1:256 I got retested in April 1:16 and 2 weeks later tested again my numbers are 1:64 I like you were under the impression that I'm allergic to penicillin but I'm not I had amoxicillin my whole life and they are in the same family.... I don't see the allergist until the 23rd today is the 4th of May and I just want to crawl up in a ball and die please tell me it got better !
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