I want to thank you for taking time to look at my condition. Prior to August 12, 2012 I had a normal life and was perfectly healthy. Now I constantly feel sick and am no longer enjoying life. I have tried to put all my symptoms and tests as concisely as possible.

In addition to the standard prostatitis symptoms of pain in prostate, general fatigue, and post urination drip. I also suffer from lichen sclerosus on the tip of my penis and swollen throat and underarm lymphnodes.

Antibotics are helping when I am on them, but about 5 days after I get off them symptoms seem to worsen again. I am concerned that whatever is causing the problem will eventually become immune to the antibiotics.

Since my symptoms came on very suddenly and go away dramatically with I am on antibiotics (Cipro and Bactrim) my current theory is that my prostate is infected by Mycoplasma Pneumoniae (which I tested positive for the anitbodies). I am thinking this COULD cause prostatitis, inflammation of lichen sclerosus, and cause my immune system to go haywire and my lymphnodes to be over worked.

I also tested positive for ANA, but no actual ANA diseases, and I have High Bilirubin which could just be because I rank a lot in college.

ANY thoughts or suggestions you may have would be GREATLY appreciated, and could lead me down the road to one day being cured. I know I am not the only one suffering on here. Hopefully we can all work together to succeed where current medicine has not. Thank you again.



2005
Had chlamydia, but was quickly cured

2006-2012
Was in monogamous relationship

Date of exposure: 8/12/2012
I received oral sex and had unprotected sex with a girl. I still keep in touch with this girl, and while promiscuous, she is currently health.
Date of initial symptoms: 8/15/2012



INITIAL SYMPTOMS
Fever
Weakness
Pain during urination
Tingling pain in genitalia

CURRENT SYMPTOMS
Pain in lymph nodes of the neck and under arms
Lichen sclerosus on tip of penis
Pain in my prostate and base of my penis
At its worst pain in the chest area



WHAT IS NEGATIVE:

Herpes
HSV (0.9 and below is negative)
9/21/12
HSV-1 = 0.13
HSV-2 = 0.03
11/26/2012
HSV-1=0.06
HSV-2=0.02
HSV-6= Past infection

CMV
11/26/2012
CMV Antibody IGC .90- Negative
CMV IGM AB .2 No antibody detected

Hepatitis
12/27/2012
Hepatitis Panel
A- Non-Reactive
B- Non-Reactive
C- Non-Reactive

HIV
11/26/2012
ANTI-HIV 1/2 AB Negative

Syphilis
11/26/2012
RPR Nonreactive

Lymphoma
Neck MRI
Small juglodigastric lymph nodes are seen. These all measure less than 1cm in shortest axis. There is no evidence of abnormal mass or loculated fluid collection. By size criteria, these are not pathologically enlarged.

Chlamydia and Gonorrhea
10/16/2012
Chlamydia- NOT DETECTED
Neisseria Gonorrhea- NOT DETECTED

Mononucleosis
11/16/2012
Mono Screen- Negative
11/26/2013
Epstein Barr Panel- Suggestive of past EBV infection.

Strep Throat
11/26/2012
Usual reparatory flora
No beta-hemolytic streptococci isolated
11/26/2012

Ankylosing Spondylitis
HLA B27- Negative

Normal Urine Culture
10/06/2012
Result: No Growth
MANY urologist visits all with no growth in urine culture

Inflammatory disease
11/26/2012
SED Rate 13 NORMAL RAGE (1 - 20)



WHAT IT POSITIVE:

Chronic Prostatitis
MRI of Prostate:
Diffuse infiltrative process in the peripheral zone without focality. This may represent chronic prostatitis although infiltrative tumor would be difficult to exclude. There is no abscess.

Mycoplasma Pneumoniae AB
ICG, EIA = 2.75 POSITIVE over .9 is positive

High Bilirubin
10/18/2012
Bilirubin, Total 1.5H
11/16/2012
Bilirubin, Total 2.0H
12/27/2012
Bilirubin, Total 2.0H
Bilirubin, Direct 0.4H
Bilirubin Indirect 1.4H

Antinuclear Antibodies
11/26/2012
ANA TITER 1:160 Positive
ANA Pattern Homogeneous
ANA COMPREHENSIVE PANEL
RNP Antibodies 5 Normal
Scleroderma Antibodies 4 Normal
Smith Antibodies 5 Normal
ANTI SSA 4 Normal
ANTI SSB 5 Normal
ANTI DNA DS ABS 41 Normal

Thyroglobulin Antibodies
12/27/2013
Thyroglobulin Antibodies 132

Lichen Sclerosus
11/19/2012
Tip of penis shaved biopsy:
The epidermis is quite thin and these is homogenization of the upper dermal collagen. There are a few pigmented macrophages in the superficial papillary dermis.


Medication so far:

Cipro for 1 month
Bactrim for 1 month
Cipro for 1 month

John,
Just a quick question. How many consecutive days were you on antibiotics before stopping? I see a total of 3 months, but from your post I'm not sure if you had 3 doses with time in between each dose.

Thanks for your question. I was on Cipro for one month. Followed by a 2 week break. Then I was on Bactrim for a month. Followed by a 1 weeks break, and I am just now finishing up my last month of Cipro. I am not looking forward to this upcoming week.

When taking antibiotics for prostatitis 3 consecutive months isn't unusual. The problem with stopping after a month is that unless the problem is 100 percent gone, and I don't mean just the symptoms, its likely to return and respond less well to the antibiotics. So your Dr didn't do you any favors by breaking up the dose. My first bout lasted so long, around 9 months, I was on Bactrim the majority of that year.

One Dr here, think his last name begins with a 'P', tested 600 subjects and 99 percent had bacteria or bacteria like organisms in their cultures, so he thinks all prostate trouble is bacterial. Then you have the other group who thnks its all non bacterial.

It sounds like you have been through a lot of testing, so honestly the best thing you can do is read the information here. I don't want to try and repeat everything that's already posted, and besides each individual who has a thread on a topic would explain it in more depth than I could.
A lot of us have found different ways to treat it, but the first and easiest thing to do, also the least expensive, is change your diet and lifestyle. Caffeine, alcohol, spicy food, all irritate the prostate. A lot of people have reduced or even eliminated symptoms just by a change in diet. Assuming you've already done all that, explore every suggestion you see here, but do one thing at a time so you know what's helping and what isn't.

You can waste enormous amounts of money chasing a cure, so weigh each possibility carefully.

Samething happen to me!!! Still fighting it

Thanks Madcap, yeah my doctor doesn't agree that it is bacterial related and I have had to beg for antibiotics every time. I am looking for a new one now.

I have read that Mycoplasma feeds off of Arginine, which is in meats. So I have also gone to a vegetarian diet.

Has anyone used Erythromycin successfully?
Erythromycin or one of it's later generation cousins (clarithromycin, azithromycin) are the recommended antibiotics for mycoplasma and ureaplasma.

Also, I read that biofilms are an issue with curing and I was wondering if others have looked into this as well...

http://prostatitis.org/redirect.php?lin ... plasma.htm
Dr. Nicolson believes that biofilms are a factor in successfully treating Mycoplasma infections. In cases that are refractory to antibiotics, biofilms are likely a major factor. In men with chronic refractory prostatitis which is infection‐based, one often cannot be treated effectively with antibiotics. However, when Detoxamin (EDTA) or other agents to address the biofilms are used, it then becomes possible to treat these infections with tetracyclines. Patients quickly show functional increases and decreases in pain other symptoms.

John I hope you can find a Dr who is willing to listen and be flexible in his treatment. I've been very fortunate in that my wife is a Director of a large health care system, and this has made it possible for me to find Drs who are compassionate and caring. They do exist, but its not always easy to find one. You should never have to beg for a prescription if there's even the slightest hope it might help you.

Hello IamJohn-

I think you may be on to something when you stated about your nerves going haywire. It could very well be that you had an initial infection. Your body has since cleared the infection but the nerves are still irritated. Mycoplasma Pneumoniae is very common and could have caused many of your symptoms. Even with out anitbiotics the body can clear the infection.

If the infection is gone, but the body is still fighting as if the infection is present. I don't know, but wanted to throw out this theory to you?

What are your symptom Iamjohn? This situation is very weird im living the same thing as you!!! No dr can help or understand...

Thank you Madcap, I am switching urologists to one that specializes in prostatitis at a large university nearby. Hopefully he will be able to help more.

Richard,
Thanks, and I have considered that. However, the antibiotics have a pretty extreme affect that I don't think they would have otherwise. I have been told that antibiotics can lower inflammation, but when I am on them my lymphnodes no longer hurt, my pain almost entirely goes away, and my lichen sclerosus goes down.
A standard Mycoplasma Pneumoniae infection goes away on it's own, but my concern is one that is an infection lodged in the prostate might not go away on its own. It would be nice if you were right though.

Shaky,
I have my symptoms at the top of the page. However, in short, I have the standard prostate pain, plus lichen sclerosus (google it for some fun pictures), plus swollen and painful throat and under arm lymphnodes, plus my throat and sinuses get soar when I get feeling really bad. However, when I am on antibiotics I feel almost 100% better except for post urine drip and a little prostate pain. Let me know which symptoms you also have and I can share what I have learned about how to treat it.

I am on doxycycline for the next 4 weeks and am hoping/praying I will be cured by the end of it.

If anyone has any questions or advise please let me know.

I mostly have prostate pain... I feel my prostate 24-7... Before my infection never use to notice my prostate!!! I also had good result with doxy but it did not clear it... I completely stop having night sweats when i started doxy and it came back after!!! Im stuck no dr can help... Hopefully i can find help... Im also scared that the situation could become worst if i dont do something.

Hi did u get this sorted out as I'm the same from last year also on doxy and seem to help but when of I start to come back

What kind of test showed positive for Mycoplasma Pn.? Blood or urethral swab?
It's interesting that you have the Pneumonia type and not the Mycoplasma Hominis that usually causes UTIs.

Probably that's what causing you troubles. Or the chlamydia infection came back from it's dormant state. (This is the common cause according to Dr Attila Toth http://prostatitis.org/redirect.php?lin ... ostatitis/ )

Have they tested you for 'normal' aerobic bacteria? (it might happen that fecal bacteria cause this: E.Coli, Enterococcus)


What is ANA?

If you haven't took doxy yet, it sould work. If you already took doxy before, maybe another kind of tetracycline might help. (Tetracycline, Minocycline, Lymecycline, Tigecyclyne (this last one is IV only and is expensive) )

I myself am negative to the most common std-s but I'll do a more thorough testing shortly for all kinds of Myco/Chlam trough blood or by other means. Because I doubt fecal bacteria can cause such agressive symptoms under 10^5 quantity.

Dear IamJohn,

Can you describe in detail your throat issues please? how long they last? they come and go? Is it painful or just redness? What doctors have told you about it, that it is pharyngitis or what? Have you checked if it is contagious? For example if your partner develops problems after being with you or kissing you.
I developed a throat mild inflammation and doctors have no idea. it is weird but maybe it is connected after reading your story. thanks for your answer