Discussions By Condition: Medical Errors

False negative syphillis test. Please help!

Posted In: Medical Errors 33 Replies
  • Posted By: pleasehelpme
  • November 10, 2006
  • 10:12 AM

Hello, I feel certain that I have been misdiagnosed. I tested negative for syphillis and have all the symptoms. No doctor believes that it is possible especially with negative results. I have tried using herbal supplements to cure myself which I believe maybe be why it didn't show up in blood tests. I am on antibiotics (doxycycline hyc) and feel 100% better but once my prescription wears out I fear the same symptoms will return without proper treatment. Since my local hospital and family doctor won't believe me I went to a dermatologist to have him look at my almost healed lesion. He didn't believe me either. I wanted him to take a sample from the lesion and test it before it healed and he wouldn't. I am getting another blood test through a lab he referred me to. From what I read about neurosyphillis I will need to have spinal fluid extracted. I fear that I will not be able to convince a doctor to perform this test. I can't list all the details here but I do believe it is possible to get later stages of syphillis under the right conditions. I am not on here to argue or have someone tell me it is something else. I am totally convinced this is what I have and it is frightening that modern medicine is behind the times. I wish they would just believe me and give me the cure. It is aweful living in fear of the symptoms returning. Since I started the antibiotics I have not noticed any of the neurosyphillus problems but I do notice the damage done. Please help!!!!!!!!!!!!!!!! If anybody can help then please let me know. Please!!!!!!!!

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33 Replies:

  • You're not here to argue, but you have to be told, if you still have the 'painless lesion' from syphilis then there is no way you're going to have neurosyphilis, it takes many many years (can take as long as 40) you'd pretty much never have both symptoms at the same time. If you still have the 'lesion' or it just recently went away (it should heal on its own in a few weeks) then 2 weeks of doxycycline twice a day will clear it up (its just a bacteria and it will be killed off). However, if you feel "100% better" right away after taking the antibiotics, again I doubt you have syphilis, the symptoms wouldn't just spontaneously resolve in a day or two. However if you need tests to confirm it you can get a VDRL, RPR and FTA-ABS test done, if those are all negative you can pretty much be guaranteed you don't have syphilis. If your insurance doesn't feel it is warranted you may have to pay for them yourself.
    Anonymous 42,789 Replies
    • November 11, 2006
    • 04:47 AM
    • 0
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  • Hi PLeasehelpme.... Have you got anywhere with your Syphilis concerns??? I was in a similar boat for many months this year having caught one std got that treated with doxy and cipro...only then to develop a bodywide rash a few days after finishing the first course, then proceed all the symptoms of what at first could have been HIV ARS, and then changed over time and seemed more like syphilis.....taking it all the way to present day (now 8 months) when I am now awaiting to see a Neurolgist, an Infectious disease specialist and a tropical disease specialist! My symptoms now are nearly completely neurologial (pins and needs body wide, speech impaired, transcient loss of feelings in various parts of the body, neurpathies deep tissue aches and pains so on and so forth) What gets me is that you cant simply get a doc to adminsiter say Pencilin on "clinical suspicion" you have to suffer and suffer and suffer if the bllod tests say so!! For months everytime I started Doxy I got better, within a few days of stopping I deteriorated, in the end (on my 6th course of doxy in the year) they stopped having any effect at all. Ive had negative Syphilis & HIV test out to 7 months, and my STI clinic think Im nuts. Im now being forced to consider something equally serious, that being the possibility that my initial infection triggered Multiple Sclerosis. Dont let anyone tell you your nuts....and your not alone in having researched Syphillis thoroughly, and finding that a) Some antibitoics have been proven to deviate the course of the infection b) some have developed neuro-syphillis within a year of infection, despite no other "classic signs of infection" Some have been treated based on a clinical probability despite negtaive tests, and have improved...what does that tell you??? Oh what i would give to find an STI doctor who would listen to me! Bet your life if in the end they do find Syphillis in me, the initial STI clinci will be getting a letter from my lawyer.
    Rufanuf 1 Replies
    • November 21, 2006
    • 02:19 PM
    • 0
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  • I am very curious if any of you have had any luck, or if you would just be willing to follow up on your stories. I feel that I am in the same sort of a boat, and working hard to clear up the problem... solutions would be appriciated.
    Anonymous 42,789 Replies
    • November 28, 2006
    • 07:57 PM
    • 0
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  • It could be Lupus! This is a very common thing among people w/Lupus. You need to tell your dr to order an ANA, anti-dsDNA assay, and an anti-Sm assay. There are other tests but these are some of the newer ones (except for the ANA, which is standard). You can find more info at e-medicine.com Good luck to you. Jane
    Anonymous 42,789 Replies
    • November 30, 2006
    • 05:55 AM
    • 0
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  • Whoops. Sorry. I read wrong. Scratch the Lupus thing. I feel really embarrassed. e-medicine is still a useful tool, though.Jane
    Anonymous 42,789 Replies
    • November 30, 2006
    • 05:58 AM
    • 0
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  • Wow, I feel like I just read my bio when I read your plea for help. I too have spent countless agonizing months and now years investigating the same diagnosis as I feel that I have been misdiagnosed. I have had all the standard tests such as nontrep and trep spec tests. Some of them numerous times and have undergone a lumbar puncture as well with neg VDRL but elevated protein and cell count and still cannot get a Dr to take me serious. I have spent enough time researching the disease to hold an honorary doctorate and feel that I know more about the disease than do most modern day doctors. I have been to some of the most prestigious medical centers and have seen many different specialists as well but here I sit pondering my next move.
    talktome 3 Replies
    • November 30, 2006
    • 06:08 AM
    • 0
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  • Thanks for the sincere replies. I'm not getting anywhere. I feel like I know more then the doctors too. I talked to the nurse who runs my local STD clinic and she doesn't even know syphilis is a bacteria. That is scary. I suspected maybe yaws or lyme disease but they say those are not sexually transmitted. If those in a similar situation are for real then it is nice to know I am not alone. Please let me know if you find out what it may be.
    pleasehelpme 3 Replies
    • December 10, 2006
    • 04:07 AM
    • 0
    Flag this Response
  • sorry to hear that your struggle continues. It does get exhausting at times doesn't it? One of the hardest things is that you really cannot talk too many people about the suffering that you are going through because of the taboo of the subject. I am lucky to have a few friends and family that have been very supportive most of the time ( when they are not asking me what they are going to do to get me over this). I would be more than willing to talk by email if you are in need of support. As I mentioned, I have been dealing with this for 2.5 years and have been to 4 STD clinics throughout the country, seen 3 neurologists, an opthalmologist, 3 dermatologists, 3 Infectious disease specialists, and a few internal med MDs. Have had a lumbar puncture, EMG, MRI, liver panels, countless blood tests you name it. Been to San fran, Denver, Mayo clinic, and a few others. I have abnormalities in a few tests but nothing enough to give a diagnosis in support of neurosyphilis as all the blood work comes back negative for that disease. I have read a lot of research from past scientists including beerman and stokes and J Lawton Smith who all talk about seronegative late syphilis but todays MDs shun the idea. My story is unbelievable as I am sure yours is too. Continue to stay strong and do your best each day to help yourself and others. I would love to talk more on email if that is possuble but do not know haow to do that without posting it on this site. Let me know if interested.
    talktome 3 Replies
    • December 10, 2006
    • 00:29 PM
    • 0
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  • Hey, have you looked into lyme disease? Lots of people don't know that they have it and both Syphillis and Lyme disease have the same type of bacteria Spirochetes. I don't know a lot but something you could look into.
    Anonymous 42,789 Replies
    • December 11, 2006
    • 03:34 AM
    • 0
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  • We can talk in email. I'm not sure either if there is anyway to exchange emails without posting it here.
    pleasehelpme 3 Replies
    • December 11, 2006
    • 08:59 PM
    • 0
    Flag this Response
  • pleasehelpme, I have an old email account that is not used anymore. You can email me at timtamcam@msn.com and I will look for it and reply with my current email account. Look forward to talking more. I have some possibilities for you that may be worth looking into. Talk more later.
    talktome 3 Replies
    • December 12, 2006
    • 06:42 PM
    • 0
    Flag this Response
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  • Ok. I sent you mail.
    pleasehelpme 3 Replies
    • December 12, 2006
    • 08:25 PM
    • 0
    Flag this Response
  • have an of you had moth like eaten hair loss
    Anonymous 42,789 Replies
    • February 12, 2007
    • 05:38 PM
    • 0
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  • i think i have syphilli aswll ... but no one takes me seriously ..ive lost my hair aswell
    Anonymous 42,789 Replies
    • February 12, 2007
    • 05:41 PM
    • 0
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  • generally the hair loss that you describe occurs as a result of secondary syphilis at a time when most diagnostic tests for syphilis are the most accurate. Have you had any of the tests yet?
    Anonymous 42,789 Replies
    • February 13, 2007
    • 04:39 AM
    • 0
    Flag this Response
  • I just read this post, I've been suspecting this as well. My boyfriend and I have the same symptoms and all the DR's think we are nuts. I have good reason to believe this as I have had STD's in the past (from a guy that had sex with prostitutes and was into drugs). Please post I need to talk through email.
    sosickofthis 31 Replies Flag this Response
  • Doctors aren't going to hand out perscriptions to penicillin on a suspect basis anymore because there are too many bacteria now resistant to it. Furthermore, it is detrimental to your own health as well. I'm surprised you were even given doxycycline, especially so many times. As for the person who said the doxycycline stopped working after the 6th time- well that's exactly what I'm talking about. Quite possibly you have now created a system-wide tolerance of the antibiotic and it will no longer have any affect on whatever bacterial may be causing the problem. Why didn't you ask for a subcutaneous injection instead of taking pills? Were you taking the pills on a scheduled basis? Did you miss any of the dosages? Most doctors won't even perscribe pills because too many patients don't take them as indicated and thus the syphillis never goes away. Before jumping to the conclusion of syphillis, you need to go to an infectious disease specialist. These doctors focus exclusively on STDs and other type conditions and are far more qualified to assess the rash you have.
    Anonymous 42,789 Replies Flag this Response
  • I understand how you feel. I don't personally have syphillis but i had a friend who did. My advice is to keep a check on your symptomsans continue to keep your doctor informed. It will save your life to do this. Syphillis is no jokebut if the doctor says the test is negative what can you do??? I am very interested in all I can learn about the disease. Can you tell a little about it.
    Anonymous 42,789 Replies Flag this Response
  • are any of you from MA?
    Anonymous 42,789 Replies Flag this Response
  • You're not here to argue, but you have to be told, if you still have the 'painless lesion' from syphilis then there is no way you're going to have neurosyphilis, it takes many many years (can take as long as 40) you'd pretty much never have both symptoms at the same time. If you still have the 'lesion' or it just recently went away (it should heal on its own in a few weeks) then 2 weeks of doxycycline twice a day will clear it up (its just a bacteria and it will be killed off). However, if you feel "100% better" right away after taking the antibiotics, again I doubt you have syphilis, the symptoms wouldn't just spontaneously resolve in a day or two. However if you need tests to confirm it you can get a VDRL, RPR and FTA-ABS test done, if those are all negative you can pretty much be guaranteed you don't have syphilis. If your insurance doesn't feel it is warranted you may have to pay for them yourself.You can have neurological signs of syphilis in the secondary stage!! What you're saying is completely false!!!!! Please let me know if you would like me to show you evidence, I've THOROUGHLY researched this disease for YEARS!
    Anonymous 42,789 Replies Flag this Response
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