Aa
Lost and scared
Doctor,
Thank you for time. I am in trouble and don't know what to do. I am going to try and keep this as short as I can.
I'm 39 years old and was in the best shape of my life with no illnesses prior to my story. In November of last year I had protected sex three times and unprotected oral sex (me receiving) with a female sex worker in the Philippines. Literally 3 days later I had horrible diarrhea for a week with major abdominal cramping, then a week or so of constipation. My urine was cloudy and had bad odor. The abdominal pain lasted for several weeks after. Around week 4 I had a work physical and got a call from them because of unusual lab work. My liver enzymes were ALT-163 AST- 470 Also my LD reading was in the 700s and I had high protein and blood in my urine. I had several liver function panel tests over the last 6 months and the readings keep going up and down. At week around week 7 I lost 10 pounds of muscle which I've gained back since but in fat. I developed a rash all over my my back that lasted for several weeks. Week 8 white flaky patches on the inside of my cheeks that finally settled down to a raised thick white line at the bite line all the way across my cheeks to my lower lip. Week 9 horrible burning skin and tongue. The burning on my upper back and arms. That lasted for months. White coating on tongue. Bleeding gums and gum pain and joint pain. Numbness in my hands and feet that has never gotten any better but progressively getting worse along with the joint pain. At this rate I won't be able to walk in a year or two. Since the worst pain is in my hips but also shoulder, elbow, knee and ankles. My stools never have returned to normal and are diarrhea like. I also have constant bad pain in my kidneys both sides. Dull aching with sometimes shooting pain. I'm also getting headache like pressure in my head and a strange sensation within my lungs.
Now let me tell you what I've done. I'll leave out some of the tests because the doctor has run many multiple STD, CBC, liver tests, and micro organism type tests. Also had my back sores biopsied which the dermatologist said it was possibly pityriasis rosea in her opinion. Ok so here it goes,...several Hepatitis C tests and D and E antibody tests. (inoculated for A and B) tests including a Hep C RNA test. HIV 1/2 antibody blood tests at weeks 8.5, 12.85, 17.5, and 24, bDNA test at week 13. Oraquick advanced oral swab week 14. I had a PCR test at 9.5, 18.85, and one at 26 weeks. All negative or (below the detectable amount which was 30 copies on the last PCR) Also one T cell test which was kind of early in my sickness to see if they appeared unusual which the doctor said there is no inversion in the ratio as of yet. The most recent urine test does flag for elevated protein in my urine again. Also low creatinine.
So.... I have been tested out to 7 months and I am negative for everything. All I know is my liver readings constantly up and down, my kidneys hurt, my joints are deteriorating rapidly, my gums hurt and bleed and my stools are always loose. I am taking prednisone from the doctor which has helped tremendously with the pain and burning sensation in my joints but they still click and hurt.
So my questions are-
1. When does symptoms overrule negative testing and what would someone do to get a diagnosis when the medical community won't take notice until I'm on deaths door?
2. Is it possible that this is something other than HIV, being sexually transmitted??
3. What would you do if you were me? Who would you talk to? Where would you go for help?
Thanks you for your time, I really appreciate it.
Thank you for time. I am in trouble and don't know what to do. I am going to try and keep this as short as I can.
I'm 39 years old and was in the best shape of my life with no illnesses prior to my story. In November of last year I had protected sex three times and unprotected oral sex (me receiving) with a female sex worker in the Philippines. Literally 3 days later I had horrible diarrhea for a week with major abdominal cramping, then a week or so of constipation. My urine was cloudy and had bad odor. The abdominal pain lasted for several weeks after. Around week 4 I had a work physical and got a call from them because of unusual lab work. My liver enzymes were ALT-163 AST- 470 Also my LD reading was in the 700s and I had high protein and blood in my urine. I had several liver function panel tests over the last 6 months and the readings keep going up and down. At week around week 7 I lost 10 pounds of muscle which I've gained back since but in fat. I developed a rash all over my my back that lasted for several weeks. Week 8 white flaky patches on the inside of my cheeks that finally settled down to a raised thick white line at the bite line all the way across my cheeks to my lower lip. Week 9 horrible burning skin and tongue. The burning on my upper back and arms. That lasted for months. White coating on tongue. Bleeding gums and gum pain and joint pain. Numbness in my hands and feet that has never gotten any better but progressively getting worse along with the joint pain. At this rate I won't be able to walk in a year or two. Since the worst pain is in my hips but also shoulder, elbow, knee and ankles. My stools never have returned to normal and are diarrhea like. I also have constant bad pain in my kidneys both sides. Dull aching with sometimes shooting pain. I'm also getting headache like pressure in my head and a strange sensation within my lungs.
Now let me tell you what I've done. I'll leave out some of the tests because the doctor has run many multiple STD, CBC, liver tests, and micro organism type tests. Also had my back sores biopsied which the dermatologist said it was possibly pityriasis rosea in her opinion. Ok so here it goes,...several Hepatitis C tests and D and E antibody tests. (inoculated for A and B) tests including a Hep C RNA test. HIV 1/2 antibody blood tests at weeks 8.5, 12.85, 17.5, and 24, bDNA test at week 13. Oraquick advanced oral swab week 14. I had a PCR test at 9.5, 18.85, and one at 26 weeks. All negative or (below the detectable amount which was 30 copies on the last PCR) Also one T cell test which was kind of early in my sickness to see if they appeared unusual which the doctor said there is no inversion in the ratio as of yet. The most recent urine test does flag for elevated protein in my urine again. Also low creatinine.
So.... I have been tested out to 7 months and I am negative for everything. All I know is my liver readings constantly up and down, my kidneys hurt, my joints are deteriorating rapidly, my gums hurt and bleed and my stools are always loose. I am taking prednisone from the doctor which has helped tremendously with the pain and burning sensation in my joints but they still click and hurt.
So my questions are-
1. When does symptoms overrule negative testing and what would someone do to get a diagnosis when the medical community won't take notice until I'm on deaths door?
2. Is it possible that this is something other than HIV, being sexually transmitted??
3. What would you do if you were me? Who would you talk to? Where would you go for help?
Thanks you for your time, I really appreciate it.
Please be mindful when posting because this is from 2011. The poster is no longer around.
You never mentioned whether you did tests for bacterial STD's such as:
Gonorrhea, Chlamydia, Syphilis, UreaPlasma, Mycoplasma and Trichomoniasis.
Most of those can be detected after about 6 or 7 days... but for Syphilis you would need to wait approximately 6 weeks for accurate test results.
If you didn't do those tests, then I suggest you do as soon as possible.
Some of your symptoms could be indicative of a bacterial STD, but its also not a given from the time frames you described (then again, each person's biochemistry is unique).
Also, you have to keep in mind that you were in the Philippines which could be a radically different environment from what your body is accustomed to.
As such, being exposed to such different environmental factors could possibly wreak havoc on your internal systems until they adapted.
As I said... if you hadn't done tests for bacterial STD's, then do them, and possibly ask your doctor to do a vitamin/mineral testing panel (needs to include Vitamin D as well).
Gonorrhea, Chlamydia, Syphilis, UreaPlasma, Mycoplasma and Trichomoniasis.
Most of those can be detected after about 6 or 7 days... but for Syphilis you would need to wait approximately 6 weeks for accurate test results.
If you didn't do those tests, then I suggest you do as soon as possible.
Some of your symptoms could be indicative of a bacterial STD, but its also not a given from the time frames you described (then again, each person's biochemistry is unique).
Also, you have to keep in mind that you were in the Philippines which could be a radically different environment from what your body is accustomed to.
As such, being exposed to such different environmental factors could possibly wreak havoc on your internal systems until they adapted.
As I said... if you hadn't done tests for bacterial STD's, then do them, and possibly ask your doctor to do a vitamin/mineral testing panel (needs to include Vitamin D as well).
what were your results of your tests for cell-mediated immunity (CD3, CD4, CD8 counts etc?)
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
