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Where did you have the KS ( what part of your body?) and where did you have radiation therapy?
How overweight are you?
With each flare up, has any culture for bacteria ever been positive?
I noticed my first KS lesion back in 2003. (although at the time I thought it was a nother MRSA carbuncle.) By late 2006 I was absolutely covered with KS. I had spots the size of dimes all the way up to silver dollars all over my face & head, arms, legs and back. The largest lesion was located on the inside of my leg, just under the crease of my left buttock, and wrapped around under my scrotum. It was about 5" X 10" ( kind of the size of two slices of bread) very thick, puffy and purple. Following chemo, it was the only area that I recieved radiation. I would lay on my stomach and pull one knee up toward my side for the treatments. My first swelling episode was in mid 2005 2 years after the first lesion but 18 before chemo and radiation. Also the lesion came close but didn't actually contact my genitals.
I'm not sure about the names of the bacterias that were present in my blood and urine at the time of my hospitalizations... although I'm sure there were some present in my blood and urine because the hospitals that I went to for help kept me as in-patient for long periods of time in order to admin. introvenus antibiotic treatments. ORLANDO Regional lasted 28 days back inXXXXX WILLIAM ROBBINS, 8 days in 2008 and another 15 days in 2009 at Belle Vista Hospital, PUERTO RICO under DR. RAMON RAMIREZ RONDA. I didn't make note of these particular bacteria because the doctors have always vaguely led me to believe that the symptoms (i.e. the presence of these bacterias, the swelling, fever, neausea...ect.) were ONLY incidental symptoms.... and not the ACTUAL cause. Truthfully I'm very confused with the many different/vague answers a drawer full of antibiotics and deformed genitals. One ER doctor told me that I was kindah like a used car... my swelling problem was just a bunch of warning lights going off all at once. A bunch of little things adding up to one big breakdown 2 or 3 times a year. I just have to deal with it.
Actually I think there is a pretty clear explanation to your issues and it is not all that mysterious.
Between your KS and the radiation therapy you had, you have had significant damage to the lymphatic system that drains your penis area. As a result you get lymphedema- swelling due to lymph accumulation.
This is a very common predisposing condition for recurrent bacterial infection- almost always streptococcal. ( The exact same thing happens commonly in women after they have lymph nodes removed for breast cancer). Infectious diseases doctors (good ones at least) see this all the time.
I have many patients with similar conditions who get the same thing- and they can get recurrent bacterial infections- In most, after a couple episodes I maintain them on a prophylactic dose of an antibiotic- to treat strep, and this lowers the recurrences of the infection. It may not completely prevent it- but it lowers relapse rates- as otherwise the bacteria tend to not get cleared and infection absolutely will recur many more times.
Management of the swelling is a different issue altogether- as I noted that is from damage to the lymph system and is largely irreversible. I would suggest looking up a lymphedema clinic in your area as they may have some advice or device ( usually compression therapy) that may help.
This is NOT an STD.
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When I did a search online for these symptoms, I didn't see anything like this described by others people... but you have many patients with this condition? Have they suffered from KS also? Why do I not see this topic discussed more?
When a person is maintained on a prophylkactic dose of an antibiotic, can this create a drug resistance issue later on?
Why do I feel cold & numbness in my fingers and toes right before an episode?
Is the vomiting and neausea due to the presence strep and is it the reason for the sudden fever?
Do my kidneys or my urine give any warning signs to the presence of strep in my penis area?
Is the strep actually in my ball sac and the fluids gathering around the scrrotum and penis?
If I compress the area durring an episode where will the strep infected fluid go?
Yes, I see patients with KS who get lymphedema.
Google " lymphedema Kaposi's sarcoma" and you will see lots of links.
Prophylactic antibiotics potentially can lead to drug resistance. But this is uncommon in your particular case- The most common bacterial infection here is Group A Streptococcus- and it just does not develop resistance to the penicillin or cephalosporin family of antibiotics. Ever- there has never been a single strain with this resistance. So in reality, a drug like Keflex would be a good choice with low concern of resistance.
Your other symptoms- cold, numbness, nausea etc may be from sepsis as the infection is developing. A common scenario I hear is people even can get pain or fevers for a few hours BEFORE they see any redness of inflammation into the skin- the infection is beginning, but some symptoms start even before the skin feature become prominent.
Your kidneys and urine are unrelated to this.
The fluid in your scrotum and penis are lymph fluid, as I described.
The bacteria is likely on the skin surface.
Compression therapy helps mobilize the fluid, but does not treat the infection. Antibiotics do that.