unknown/unfound disease

[Subjektx]

Its been a year of hell for me, so I could possibly use any feedback from a Dr. or someone with infectious disease knowledge. I am a 33 yr old male. I had a sexual incounter with another male (no condom and I was the bottom), around a year ago. The next day I started having pains in my body, my joints, and inside my rectum. The problems just kept getting worse from there. I have gone to get tested for EVERY std I could test for and still nothing. Ive had 4 HIV tests up to the recommended 6 months, 2 syphilis tests, blood and urine work for gonnorhea and chlamydia, HHV 6 & HHV 8 test, CMV test,  Hepatitis A-B-C test 2 times, Lyme Disease test, Mono test, and LGV test. As the year continued to go by, some symptoms stayed, some went away and new ones have begun to happen. Six months ago, these were them: *Tender lymph nodes (not swollen) in my groin, under my armpits and under my jaw, chronic sore throat with mouth sores, headaches intermittenly throughout the day, barely sleeping, ear aches, random bruising, rectal pain, muscle pain, joint pain, kidney pain, night sweats, sore neck, very loose stool (everyday), tingling in hands and toes. Ive been to infectious disease specialists, my pcp (10 times), the E.R. at my local hospital (for severe kidney/back pain). Now, a year into this, a few new things are going on: * Chronic sore red throat, blood in stool (everyday) with intermittent diarrhea, muscle spasms all over my body (everyday), joint pain in my major ones, ear aches, some headaches from time to time, tender lymph nodes in armpit, groin, and neck still, kidney pain (everyday) slight spleen and liver pain. I am at a loss for what to do. I feel like this disease is slowly taking my life. I took the time to test for every test,  in their test window, I have my pcp baffled, ive had my white/red blood cell counts done (normal), liver test (normal), kidney test (normal), CD4 test 2 times (first test was: 510 -6 months-, second test: 605 -12 months-). I wanted to make sure that before I posted something on here for help, I would have taken all major steps first. Im an honest person and really need some help/guidance. I would really appreciate any help. Please...

[mkh9]

Also, regarding Lyme. I know you tested negative but if it wasn't tested at IgeneX a lot of the labs use a method that isn't as sensitive and will come up negative. You have a lot of symptoms of Bartonella. Although you don't have a fever or rash. But not everyone gets the Lyme rash. I would see a lyme literate doctor or LLMD go to www.ILADS.com and find one near you and they will test you at IgeneX for Lyme using their methods and check for the co-infections as well. You can get bitten by a tick in your back yard or anywhere not just hiking. My dog used come back full of ticks when we visited my mother in law in southern California. They just had a lot her back yard for some reason.  These are all things to think about. I am worried about the blood in the stool the most.
take care,
mkh9

[mkh9]

I don't know if you have this but thought you might want to read this.

http://www.enterovirusfoundation.org/symptoms.shtml

Also, blood in the stool can be from hemorrhoids. Is there a lot of blood in the stool or a drop or two or only on the TP. Just asking.

mkh9

[mkh9]

Hi and I have read through everything and this is not easy.  Firstly, do you still have blood in the stool? If you do you need to get that checked out no matter what else you have. You need to get a colonoscopy to rule out colon cancer. I know it is scary but I do one every 5 years because of family history. So, it isn't that bad. Get one where you can take pills the night before and that day before you don't eat and just have green jello and broth and they tell you what to drink. How old are you? Also, the blood in stool could be from some of the things I have been trying to rule out. So, one of them is ulcer. This can be caused by a bacteria called Helicobacter pylori. So you can get tested for it. One is a breath test that isn't accurate but possible to see if it comes up with a positive test for rapid urease. But you would need a gastroscopy to test for it. They do a biopsy of tissue to check for it and can see if there is any ulcer while they are in there. Also, they can check your blood for antibodies to it. So your choice. If you have antibodies to it you probably have it and would have to go through the gastroscopy anyway. It is a thought. I am throwing ideas at you to the possibilites of what you could have.  Do you and your wife have the stomach issues? What about the bleeding in the stool? what other issues in common besides the fungal sores? If the dermatologist said she had a fungus it is pretty easy to spread to you so you both should be taking an anti-fungal cream or pills depending on what he said she had. Didn't the dermatolgist tell her what type of fungus it was? If not then she needs to get it scraped for culture. You too.  So you had a stool culture? They don't automatically do the E. coli 0157: H7 unless you ask for it also don't do cryptosporidia/isopora unless you ask for it.  It is a different test. Has the doctor looked in your ears to see why you have ear infection or ear pain? have they seen anything like high ear pressure or anything like that? You could see an ENT. They could look at your ear and nose problem.  Have you had any raw shell fish? The throat picture you showed me looks pretty normal just a little inflammed. Nothing too serious. I know it is sore but it doesn't look like a strep infection or anything like that. Then you could get a gall bladder/liver/kidney ultrasound. I know these are a lot of tests. Believe it or not I have had them all too. The muscle twitching may be because of all the diarrhea you are getting low in potassium at times. So keep hydrated and eat bananas and other things with potassium. Not sure about the muscle pain. I have to think some more about the immune part of this.
take care,
mkh9

[Subjektx]

MKH9-
Sorry for the delay. I hope you respond back after all this time again. I still have been searching for answers with my pcp and am now seeing an internal medicine doc. I wanted to answer your questions in order you asked. 1.) No fever but had at beginning for a few weeks. 2.) No antibiotics before diarrhea. 3.) I had been given ciproflaxion at 3 month mark for a week and a half, to no avail(which leads me to believe this is of viral source). 4.) Had lots of night sweats at beginning and still do from time to time. 5.) Had a dry cough for about a month at the 2 month mark and another thing that comes and goes (I cant ever seem to get over any normal cold anymore and it stays with me for months. My immune system is in the toilet 24/7). 6.) I did get a stool culture done recently for OVA and that came back negative. Not sure if it included a parasite test but I assume it did. 7.) I didnt get full results of test so not sure if E. coli 0157 and H7 was tested for. 8.) Dont know or think I got tested for Cryptosporidia or Isospora. Should I ask specificaly for those? 8.) Have not been out of the country. This happened in my city of Denver. 9.) No abnormal foods or anything related to that. 10.) The photo is a picture of my throat with the sores I get all the time in the back of my throat and in my gums. If you look, you can see small capillaries ALL over the back, like its inflammed (it never looked like this until after exposure. Not sure if this disease caused some form of vasculitis, in parts of the many membranes in my body. I now get nasal sores with mouth sores also. It *****!)

I dont know if they tested for Salmonella or shigella but like you said, they usually test for that anyways but I will ask. I go back on the 16th of Sept. I cant see it being GERD based off the fact I have no reflux issues, nor have I. Lyme test has been performed with a negative result. Dont hike so no way to get bitten by anything. Have also been tested with ANA "lupus" also with that being negative.

I wanted to fill you in on a few other things for you to think about that I have noticed. First, I am a married man. I messed up but the reason I tell you is my wife and daughter are having their own set of symptoms. This has me to wonder if my daughter eating food after us could cause hers. My wife has symptoms close to mine with this new fungal that has showed up in MANY spots on her torso -front and back-. We know this cause she just went to a dermotologist to find out. I have had these small hard skin colored blisters show up on my arms the last 6 months and cant find any info on what they could be. Its like a disease some middle eastern people seem to get. Not sure. My daughter has been sick for almost a month with us and has the same type of loose stool many times a day. It ***** to see this from my side. I also noticed when my mom drank after me a few months ago, she said she got diarrhea randomly.

Soo anyways, I still have tender lymph nodes in my armpits and crotch daily, intedtinal issues daily, hard skin patches that have formed and the hard blisters, chronic sore throat with sores in mouth and in nose (one of my nostrils have almost closed down permanently), ear aches daily, muscle twitches daily (mostly in legs), sleep deprivation, very troublesome intestinal problems, kidney pain, spleen pain (I assume is due to fighting a disease), slight liver pain, and random muscle pain.

I want to give you as much info as I can because I have spent the last year and a half searching SO VERY HARD to find anything I can help myself and the doctors I see (which I feel know nothing). Thank you again for your original reply and I really look forward to spaeking with you again. Appreciate your time immensely!

-X-

[mkh9]

Hi and sorry you are having all these problems. I am not a doctor but I am a microbiologist and understand these tests at least. I have some questions and suggestions to start.
Questions; do you have any fever? Have you had any antibiotics before you got the diarrhea? Any antibiotics in general? Any night sweats? Any cough?  have they done any stool culture or ova and parasites? Test on stool for E. coli 0157 H7? What about Cryptosporidia or Isospora? Have you been out of the country? Had any odd foods or eaten out a lot? What is the photo of? It looks like there is a fissure.
Ok so if you haven't had the tests I mentioned in my questions I would get them done and a regular stool culture with Salmonella and Shigella added. They usually look for that anyway. They should test you for Ova and parasites too. Also, maybe Campylobacter. These are all possible things that at least cause the diarrhea. Some can go systemic and cause some of the other problems. I wonder also if you have GERD causing your chronic sore throat? Also, a bacteria that can be normal in the throat but can also cause problems is called Fusobacterium necrophorum. They would have to test for this specially as they don't normally do this. I also suggest you have your doctor do a lyme test at the lab called IgeneX. It is much more sensitive and specific than the labs most test at. If they won't do it you can look for a "lyme Literate doctor in your area. They will send your blood to them. Have you gone hiking where you could have gotten bitten by a tick? or walked through a field or anything like that? What state do you live in? Lastly, you may want to look for a few autoimmune tests such as ANA, RA, anti-DNA and there are some others but that is a start.