Please review my two previous posts. To date there has been no medical explanation for my signs and symptoms that I had previously asked both Dr's Keyes and Pho about. There is still regularly blood in my urine with no explanation even after cystoscopy. I am waiting to see nephrologist in follow up from my last hospital admission from 07/28/09 through 7/31/09 during which a kidney biopsy was done. I still have the severe joint pain in both feet, left knee and left hip, still have the 3+ pitting edema bilat lower extremities with no explanation, still have severe lower back pain and rt sided pain.
New info: When I was younger (age 10 to 15) I was molested by my stepfather. My mother recently has been having unexplainable medical conditions as well. Over the years she has been told at least twice that she had a false positive syphilis test. She became worried after seeing something on the internet and went to her primary care last week. He called her in today for more blood work as she is indeed positive for syphilis and has been for some time, no telling how long or who from. Could this possibly explain my signs and symptoms? I am scared to death. What would this mean for my husband? My children? (both of my boys were born via C-Section)
Please help by letting me know if this is possible. In addition to previously listed complaints I have noticed an increasing inability to focus, and increased depression, anxiety and frustration. In fact they had put me on Concerta for ADD, which I did not understand as I had never had any focus issues until this point in my life.
If this indeed turns out to be tertiary syphilis for me and my mother, is this treatable at this stage?
I am really sorry to hear you are continuing to have so much trouble with this. Before I get into the shyphilis issue, I just wanted to mention that maybe you should talk to your doctor about whether your lack of concentration could be a symptom of depression rather than ADD. He/she obviously knows you and your history better than I do, but lack of concentration is a very common symptom of depression, and therefore, maybe treating that would be something to consider before Concerta. Just a thought you can discuss with him/her.
Tertiary syphilis is one of those diseases that can be missed for a long time. I personally have never had a patient with tertiary syphilis, so my knowledge is based only on what I have read- your symptoms don't sound like those typical for the disease, but it can be difficult to diagnose, and mimic other diseases, so I think at this point it certainly wouldn't hurt to have the testing done. If you are positive, your family should certainly be tested too. If you had passed shyphilis on to your kids during pregnancy/childbirth, they would have contracted congenital syphilis and have been very ill as infants.
I have copied information from the Merck Manual but it is too long to put in this message, so I will add it as a separate post you may have this information already, but just in case, I thought I would add it so that you can read more about symptoms, diagnostic tests, etc. My apologies for it being so long.
Please read my other post first. This is an addendum with information from Merck Manual for you:
Syphilis is caused by the spirochete Treponema pallidum and is characterized by 3 sequential clinical, symptomatic stages separated by periods of asymptomatic latent infection. Common manifestations include genital ulcers, skin lesions, meningitis, aortic disease, and neurologic syndromes. Diagnosis is by serologic tests and adjunctive tests selected based on the disease stage. Penicillin is the drug of choice.
Syphilis may manifest at any stage and may affect multiple or single organs, mimicking many other disorders.
Late or tertiary syphilis: About 1/3 of untreated people develop late syphilis, although not until years to decades after the initial infection. Lesions may be clinically classified as benign tertiary syphilis, cardiovascular syphilis, or neurosyphilis.
Benign tertiary gummatous syphilis usually develops within 3 to 10 yr of infection and may involve the skin, bones, and internal organs. Gummas are soft, destructive, inflammatory masses that are typically localized but may diffusely infiltrate an organ or tissue; they grow and heal slowly and leave scars.
Benign tertiary syphilis of bone results in either inflammation or destructive lesions that cause a deep, boring pain, characteristically worse at night.
Cardiovascular syphilis usually manifests 10 to 25 yr after the initial infection as aneurysmal dilation of the ascending aorta, insufficiency of the aortic valve, or narrowing of the coronary arteries. Symptoms include brassy cough, infections, and obstruction of breathing due to pressure on the trachea, hoarseness due to vocal cord paralysis resulting from compression of the left laryngeal nerve, and painful erosion of the sternum and ribs or spine.
Neurosyphilis has several forms:
Asymptomatic neurosyphilis causes mild meningitis in about 15% of patients originally diagnosed as having latent syphilis, in 25 to 40% of those with secondary syphilis, in 12% of those with cardiovascular syphilis, and in 5% of those with benign tertiary syphilis. Without treatment, it evolves to symptomatic neurosyphilis in 5%. If CSF examination does not detect evidence of meningitis 2 yr after the initial infection, neurosyphilis is unlikely to develop.
Meningovascular neurosyphilis results from inflammation of large- to medium-sized arteries of the brain or spinal cord; symptoms typically occur 5 to 10 yr after infection and range from none to strokes. Initial symptoms may include headache, neck stiffness, dizziness, behavioral abnormalities, poor concentration, memory loss, lassitude, insomnia, and blurred vision. Spinal cord involvement may cause weakness and wasting of shoulder-girdle and arm muscles, slowly progressive leg weakness with urinary or fecal incontinence or both, and, rarely, sudden paralysis of the legs due to thrombosis of spinal arteries.
Parenchymatous neurosyphilis (general paresis, or dementia paralytica) results when chronic meningoencephalitis causes destruction of cortical parenchyma. Behavior progressively deteriorates, sometimes mimicking a mental disorder or dementia. Irritability, difficulty concentrating, deterioration of memory, defective judgment, headaches, insomnia, fatigue, and lethargy are common; seizures, aphasia, and transient hemiparesis are possible.
Tabes dorsalis (locomotor ataxia) involves slow, progressive degeneration of the posterior columns and nerve roots. It typically develops 20 to 30 yr after initial infection; mechanism is unknown. Usually, the earliest, most characteristic symptom is an intense, stabbing (lightning) pain in the back and legs that recurs irregularly. Gait ataxia, hyperesthesia, and paresthesia may produce a sensation of walking on foam rubber. Loss of bladder sensation leads to urine retention, incontinence, and recurrent infections. Erectile dysfunction is common.
Other lesions: Syphilitic ocular and otic manifestations can occur at any stage of the disease. Ocular syndromes can affect virtually any part of the eye; they include interstitial keratitis, uveitis (anterior, intermediate, and posterior), chorioretinitis, retinitis, retinal vasculitis, and cranial nerve and optic neuropathies. Otosyphilis may affect the cochlea (causing hearing loss and tinnitus) or vestibular system (causing vertigo and nystagmus).
Serologic reaginic tests (rapid plasma reagin, Venereal Disease Research Laboratory) for screening
Serologic treponemal tests (eg, FTA-ABS) for confirmation
Syphilis should be suspected in patients with typical mucocutaneous lesions or unexplained neurologic disorders, particularly in areas where the infection is prevalent. In such areas, it should also be considered in patients with a broad range of unexplained findings. Because clinical manifestations are so diverse and advanced stages are now relatively rare in most developed countries, syphilis may escape recognition. Patients with HIV and syphilis may have atypical or accelerated disease.
Diagnostic tests for syphilis: Tests include serologic tests for syphilis (STS), which consist of screening (reaginic) and confirmatory (treponemal) tests, and darkfield microscopy. T. pallidum cannot be grown in vitro. Reaginic tests use lipid antigens (cardiolipin from bovine hearts) to detect reagin (human antibodies that bind to lipids). The Venereal Disease Research Laboratory (VDRL) and rapid plasma reagin (RPR) tests are sensitive, simple, and inexpensive reaginic tests that are used for screening but are not specific for syphilis. Results may be presented qualitatively (eg, reactive, weakly reactive, borderline, or nonreactive) and quantitatively as titers (eg, positive at 1:16 dilution).
Many disorders other than treponemal infections (eg, SLE, antiphospholipid antibody syndromes) can produce a positive (biologically false-positive) reagin test result. CSF reaginic tests are reasonably sensitive for early disease but less so for late neurosyphilis. CSF reagin tests can be used to diagnose neurosyphilis or to monitor response to treatment by measuring antibody titers.
Treponemal tests detect antitreponemal antibodies qualitatively and are very specific for syphilis. They include the following:
Fluorescent treponemal antibody absorption (FTA-ABS) test
Microhemagglutination assay for antibodies to T. pallidum (MHA-TP)
T. pallidum hemagglutination assay (TPHA)
If they do not confirm treponemal infection after a positive reaginic test, the reaginic result is biologically false-positive. Treponemal tests of CSF are controversial, but some authorities believe the FTA-ABS test is sensitive.
Reaginic titers decline after effective treatment, becoming negative by 1 yr in primary and by 2 yr in secondary syphilis. Treponemal tests usually remain positive for many decades, despite effective treatment.
Again, that information is taken from Merck Manual. All the best with this; this is a difficult situation, and must be very frustrating. My thoughts are with you.
Thank you so much for your kind words, information and advice. This has brought up a lot of difficult memories. You know, sometimes you think that you have done all that you can and put hardship and pain behind you, and BHAM, you get sidelined by it again. Oh well, I am strong and I will survive. I suppose that I should be thankful if I at least can find out what has been causing all of these unexplained things going on with my body.
So, if I am reading the Merck info correctly, then should I have those last three tests done or 1 of them? Which is going to give us a definitive answer?
I hadn't mentioned it before because it I thought it unimportant, but I also have been regularly getting sores on the inside of my mouth. Of all the symptoms, the pain is the worst and instead of low impact exercise making it better it seems to make it worse. I have never seen anything where exercise wasn't beneficial and it is very frustrating for me as I am a big "endorphin" advocate. For me, exercise fights depression, regulates my weight, regulates my gastro health, it helps everything and to not be able to do it is so frustrating.
Regarding the Concerta, I do have depression as well and have been on both the concerta and an antidepressant with good results. I just can't seem to organize and focus like I used to no matter what. The clutter in my office is an exact replica of the clutter in my mind and I just cannot stand it anymore. I used to be such an organized Type A personality and now feel like I have no control over my body, my mind or anything!
Well, I will just hope that some sort of answer presents itself soon and pray that it is something simple. I do thank you so much for your time and effort on my behalf.
Have a great weekend.
I would start with a screening test (etc VDRL)- screening tests are very sensitive, meaning they pick up almost all positives, and then some, which means there can be false positives. Therefore, if that is positive, I would get a confirmatory test (eg treponemal antibody test (like FTA-ABS), which is specific for syphilis.
I can only imagine all of the memories this whole thing is bringing up for you- you sound like a very strong person, and I know that even though it is difficult, you will make it through stronger than before.
Thanks Doc for the info on which tests to run first and what to follow up with. I will write it down to take to my doctor. My next appointment is on Thursday.
And thank you so very much for your supportive and kind words. I am a very strong person and have never been content to just survive. I live my life to thrive and it is the only way that I know. I have a wonderful husband and two little boys that I am blessed with and that gives me all the motivation that I need to beat anything. You know, my husband is more concerned with how all of this is affecting me than he is concerned for what this could possibly mean for him. So you see, there is always too much good in life (if you choose to see it) to let the bad stuff run the show! And with that I will say thank you again for all of your time and effort on my behalf.
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