Weird symptoms for over 4 months - what next?

[mr_mini_me]

Hi all,

I just need advice and help on what to do next - I'm at my wit's end with things.

So, I had a brief vaginal exposure back in mid-late April (in the UK), I penetrated a 40-50 year old woman (whom I met on a swinging site) for 2 minutes before I thought it was unwise and we stopped and she finished me off with oral sex & a handjob. I noticed friction marks on my shaft after finishing.

2-3 weeks later, I noticed 3 itchy, inflamed boils/spots on my ribcage and then a scaly, dark rash appeared and spread to my groin, armpits, neck, arm, legs, other side of ribcage. (These scaly lesions were surface flat and nonitchy and lasted for +2 months while treating with antifungal cream).

At 4 weeks, I had an insatiable dry mouth for 2 weeks. And, headaches behind my ear + loss of appetite.

At 6 weeks, I had aches and pains in my joints & muscles (that continue to this day have almost completely subsided) and tingling sensations in my left arm (which does not recur and lasted a day or two).

At 6 weeks I tested negative on a fingerprick sample of blood (one pricks the finger and collects blood in a tube and sends it to the lab) with a 5th gen ag/ab test.

7-12 weeks, I experience burning palms & soles (which still persists but a lot less intense) accompanied with rashy palms (which also still persists - though I'm trying to treat with fungal cream (1% hydrocortisone cream). Also, I experience painless legions on the side of my tongue (though my oral hygiene has been bad due to stress & anxiety & smoking), little brown, surface-level freckles appearing over my body, tingling in left arm, an infected face spot (where I picked a spot on my face and it swelled up - had to treat with antibiotics), follicitus on my should blades/back/scalp/inner eye corner, worsened appetite and dry/burning/crawling skin on my body, and joint/muscle aches & pains.

12th week, I retest with the same test using a 5th gen duo ab/ag which also comes back negative.

13th week, I go to a clinic and they take a venous blood sample to test, though I'm unsure which testing method they deployed - I'm guessing it's a standard antibody test or a 4th gen duo (most likely!). I'm further experiencing jaw clicking (right side), easily bruising skin on face, and still rashy and somewhat prickly palms.

Further info:
- I'm also an avid hiker and have been hiking several times before and after the sexual exposure in Wales (UK) - forests and mountains.
- I have had 3 negative duos during and after the window period - should I take this further with an RNA PCR or wait until 6 months to test again with another duo?
- I've tested neg for hiv, syphilis, chlamydia and Gonorrhoea.
- I've gone to my GP and they're running an autoimmune profile to check what the hell is going on. Still waiting for results - it's been 2.5 weeks already - so slow! GP didn't seem convinced that it wasn't HIV tbh regardless of my negative results.
- Throughout my life I have always had skin infections/problems... follicitus, ringworm, lesions on tongue, cellulitus, boils, scalp canker/sore, etc. But they were all over like a 15 year period and occurred sporadically but IMO there seemed to be some correlation to diet (not sure though), whereas, my symptoms have all come on in the past 4-5 months
- I've been having eye floaters as well
- I've had a rubbish diet because of anxiety & stress recently - literally eating nothing for days or eating takeaway foods because i just can't motivate myself to live like a normal human being (depression!) But my diet had improved since my 6 week negative and then more so again at 12 + 13 weeks.
- I'm still seriously scared about HIV :'(

What do I do next?

Many thanks, i look forward to your responses.

[SteffenI82]

You should check for htlv-1 (https://en.wikipedia.org/wiki/Human_T-lymphotropic_virus_1)

[mr_mini_me]

Blood work came back normal, hiv neg (4.5 months after exposure). Lymes came back negative - doc said it would've shown by now if i did have it - sound about right? Will retest hiv & syphilis at month 7 (which is around now) and then can satisfy Dr that it isn't hiv... :/

[mr_mini_me]

All symptoms pretty much subsided except my knees feel sore consistently (cartilage) and my hands are still rashy and sensitive - like they only become rashy when I put my arms below my body ; I feel the blood rushing to my hands, and my rashy hands become prominent (base of palm, fingertips, and fingers) . Oh, and little brown freckles are still showing up on my body but at a much slower rate (almost none have come up in the last 2 weeks), sometimes get miniheadaches. Soles feel the same as palms.

[mr_mini_me]

Further, I managed to dig out some doxycycline (from my antimalarial days when I worked abroad) and that seemed to help with/remedy some of the aches, headaches and the rashy palms - I was taking 2 pills a day for 4-6 days. I discontinued because I ran out of them. Don't know if that means something at all...

[mkh9]

What kind of test did they do for lymes? ELISA or EIA? That isn't as sensitive as PCR or a molecular method. So yes it would be long enough after exposure but it depends on what test they used. Since doxycycline helped it could be possibly be lymes disease. I would try to get tested from the lab called Igenex. It is in the U.S.  but if you can pay for it then it might be worth it. To treat lyme you need double strength Doxycycline (I think double) for a month. I wouldn't self treat. Taking it only for a week wouldn't kill it. But it also could be some other bacteria that worked with that drug. I would talk to a infectious disease doctor .  You could also  check to see what the treatment is for Syphilis and after you retest if it is positive do whatever they say to get rid of it. But it is not likely.
mkh9

[mr_mini_me]

Hi, apologies for not getting back to you sooner, I wanted to come back with more information. I had another full STD panel which came back negative for HIV, Syphilis, Chlymidia & Gonorrhea and that was at 8.5 months post exposure. Had other tests by GP - WBC, CBC, Renal, Liver Enzyme, - all normal according to GP. Booked in for appt with ID Dr, but that's 3 months away!! Not really impressed with the healthcare here to be honest - but stuck with it atm - private is ridiculously expensive.

Stopped self-treating as you recommended, but I think I might start again because some of the symptoms are slowly creeping back but only ever so slightly - spots on shoulder blades, tinititus and migratory muscle/joint aches. I've still got an itchy anus and rash on palms & soles. And the wait to see the ID Doc is long away and I doubt it'll yield any particular resolution.

I've tried to do my own research and  have come across many different fungi, bacteria, infectious diseases, etc. and can't really pinpoint anything.

Not really sure what to do anymore... Just seems like I have to accept it and move on...

[mkh9]

Do you know what test they did for the Syphillis test? What country do you live in? Usually now in the U.S. they should do a RPR test then validate with a antibody test like FTA. If both weren't done there is a 20% false negative rate on the VDRL/RPR tests. So you could get the FTA done. If the RPR was not confirmed by another method. Since you said your hands and feet have a rash this could potentially be a sign of infection. I think you should follow up with the infectious disease doctor.
mkh9

[mr_mini_me]

Sorry, I did in fact write and believed myself to have posted a reply - nowhere to be seen though.

I live & tested in UK. Didnt get round to calling them and they have concealed the methodologies for the test (i.e., their syphilis testing methods aren't publicised online/their website)... So I don't quite know yet. I've heard that secondary & tertiary syphilis is harder to identify... I think I'll try going to the hospital's ID department because I cant hang around and be in discomfort/[mild]pain anymore :/

Do you think CA MRSA could cause this at all?

[mkh9]

Hi mr_mini_me
It doesn't sound like MRSA. Also, you can cure early secondary syphilis but the treatment takes a long time. If you do have it you need to get it diagnosed. Explain what you said to me to the doctor regarding the early rash (Doesn't sound like Syphilis) but the later rash on hands and soles of feet could be. Did your rash near the groin look like this?https://www.cdc.gov/poxvirus/molluscum-contagiosum/index.html
Let me know what the doctor says.
thanks,
mkh9

[mr_mini_me]

Thanks for your guidance, help & support, mkh9. I really do appreciate it.

So, the syphilis test I had done at 6 weeks and 12 weeks was an IgG/IgM by EIA. Then the test I had done at 13 weeks and 8.5 months (+ a duo HIV test at 4.5 months) was an RPR. Tbh, I find it hard to believe that 5 different tests over an 9 month period wouldn't be able to pick up an STD - HIV, Syphilis. I think you might be right in that maybe this just isn't an STD and some other pathogen, community acquired (bloody well hope so!)...

These are my other theoritical causatives:
- hiking
- drinking 'fresh' stream water & swimming in it
- swimming in public pool
- I have (tom) cats and they occasionally scratch me
- I ate mushrooms (mushroom poisoning?)
- Had multiple washes in my ex-home's jacuzzi which seemed to have a build up of filth/grime in it
- Ate a lot of unpasterised cheese (halloumi)
- Was gardening and clearing a whole load of logs with bugs, spiders and whatever else lingering around
- Was sharing house with someone that had been in hospital recently

I'm going to head to an emergency A&E ID department because I feel like I'm in health limbo at the moment and the aches, headaches and burning palms/soles are creeping back and I just can't...

Best,

I'll update if/when I find out what's causing this or an update every so often.

Oh, and the very first symptom was a draining lump/bite on my frontal scalp - I've read that the scalp is a common place to get bitten by a tick or flea and go more unnoticed.

[mr_mini_me]

Just a quick update: symptoms have been reduced to just the rash on my palms & soles, anal itching and loose stools (though my rectum has been experiencing drainage of mucus & blood).

My doc told me that I had a vitamin D deficiency, but I doubt that's the culprit.

I've got an appointment with a specialist Dr (infectious diseases) next week which I hope will provide some help/guidance. The only thing worrying is that the Dr specialises in HIV and so I'm led to assume that my GP does believe it is HIV but didn't want to cause more anxiety (sounds crazy, but it really isn't that crazy when Doctors have preserve the mental state of their patients too!). I'll update when I hear back.

The one thing that is an interesting development is that my housemate has a parasitic infection - B.Hominis and Endolimax Nana... Can these cause funny symptoms too?

Best,
Mini_me

[CurfewX]

You do NOT have HIV.  You have long past tested conclusively negative and the results don't lie.  Perhaps you were referred to an ID doc who specializes in HIV so that an expert can tell you what you have already been advised.

I certainly hope you do get to the bottom of the health problems you have been experiencing, once and for all.

[mr_mini_me]

Thank you for your reassurances, Curfew. I guess, I'm just trying to diagnose & resolve my annoying symptoms and for almost a year I've been in this whirlpool of hysterics. Mentally, I've just crumbled, I've betrayed the people I love the most, lied and I've really effed up my life tbh - employment, finances, relationships. I don't know how to navigate this terrain and get out of this mindset.. I probably do need to see someone that can help emotionally & mentally. Would you recommend being honest with S.O?

[CurfewX]

I am not a relationship counselor, and I can't possibly fully understand your current relationship and whether being honest is likely to make things better or worse.  PLEASE see a professional counselor.  I think you will benefit a great deal from having someone to talk to in real life, who can help you tackle your issues one by one.

[mr_mini_me]

Thank you for your objective advice, I really appreciate it and your and everyone's help/advice through trying times.

[mkh9]

Also, the rash you had at 2-3 weeks sounds like a virus. Nothing serious. I did see you had a rash on palms of the hands. So you might retest with RPR followed by FTA. Just a thought. You can have a positive ANA (Antinuclear antibody test which is a serology test, that means nothing as many people have a positive ANA and it just cross reacts with a lot of things. However, lymes patients can sometimese have a positive ANA. But yours sounds like it was negative. The ANA is not a test for Lymes though. By the way 99% of your symptoms are not anything to worry about.
mkh9

[mkh9]

Also, what Syphilis test did you have. Both a RPR or VDRL and  FTA Antibody are required .
mkh9

[mr_mini_me]

Hmm.. I'm not quite sure on the testing methods deployed for Syphilis. Tbh, I just trusted the result for it and since being tested 3 different times, I thought it'd show up... (I know, different/inconsistent logic for hiv). I'll have to call the clinic in the afternoon and ask. If I may ask, why are all 3 methods required?

[mkh9]

Only two should be done not three. So either the RPR or VDRL and followed by FTA if there is any question about the result. So they must not have had any questions about the result. In some countries FTA can be false positive because it interacts with other bacteria only in some countries. The RPR can give some false negative results. So the FTA antibody is done to confirm. In the US the rate of Syphilis has dropped to about 3 in 100,000 patients. So it is rare here. But I don't think you had a rash on your palms or soles of the feet or a painless lesion on the penis (though the lesion is often missed).
mkh9

[mkh9]

Hi, and sorry you are  having problems. I looked at your history. I think the boil like things maybe was a bacterial infection from Staphylocccous aureus. It is a common skin infection. You can get it from touching surfaces contaminated with it or someone that has a sore or has it on their skin and then you get friction and perhaps that is what that was. Obviously you appear negative for the HIV tests. You don't have to test again since it is 5th gen. Also, the rash on hands, palms may be from your hiking etc. You could get tested for Lyme's disease and the coinfections associated with it, to rule that out. the target rash doesn't show up all the time.
Eye floaters are usually nothing to worry about. You can double check with a eye doctor if you like though.

Hope this helps.
mkh9

[mr_mini_me]

Thank you for your response, mkh9.

The boil like things could may have been bites as they were so closely spread and itchy as hell when they first presented themselves and they funnily enough came right after my hiking expedition, with the skin rash following on after.

I am awaiting results for lyme test. Since I had a cutaneous lesion on my scalp before all of these symptoms, I've been looking at leishmaniasis as a possibility (long shot, I know, but just throwing it out there as climates change and being in forested, rural areas).

Am I right in thinking that if these symptoms were due to HIV that my test would be positive or do you think I could be one of those people that test positive at a later date (outside the 3 month window)? I know this forum is an anxious place, and I am moderately anxious at this time, but I'd appreciate the blunt truth/opinion rather than be sugar coated (not implying that you do so though).After scanning through my symptoms (keywords) on this forum and regards to HIV, I've found a few other people that have had the same symptoms (rash, aches/pains, headache, palm rash, etc.) asking the same questions, but being told the '3 month is golden' rule, when the reality is there are edge cases... And being that immune systems vary from person to person, this still could rationally be my ailment...

[mkh9]

You don't need a seroconversion or "window " for the 4th and 5th gen tests. They use molecular methods to determine the answer.
Test for all the lyme co-infections as I mentioned.  What country are you in?  Unless you live in South East Asia you probably haven't been exposed to leishmaniasis.
mkh9

[mr_mini_me]

Understood.

I will - off the top of your head would you list the go-to coinfections?

I'm based in the UK (Wales & England, mainly). I have visited/lived in Africa, Asia in the last 2 years, not sure if the illness/disease would lay dormant for this long though...

[Kirstie_MHModerator]

Since you have been previously advised that your HIV tests are conclusive and you do not have HIV, we will ask that anyone commenting focus on other possibilities.

[mr_mini_me]

Additionally, my ears have been popped (like when in a plane) and pop every now and again & chronic ear ache.

I did expose myself to a waterfall/lakes while hiking and I did drink some 'fresh'  water from a stream/waterfall... Bloody hell!

[mr_mini_me]

Any food for thought here? Please.

[mr_mini_me]

My ANA (autoimmune) profile came back and it revealed a low platelet count and a high red blood cell count. Not sure what to make of it... Having further blood tests performed (& another hiv duo test (4.5 months after exposure)) - awaiting results...

Could this still be HIV?

[auntiejessi]

You've already been told it's not HIV, and your tests prove that.

Have you had any food allergy testing done? Parasite testing done?

What's your blood sugar? Incessant thirst can be a symptom of diabetes.

[auntiejessi]

Oh and NONE of this is the result of an STD. No STD would give you these symptoms, or cause your test results.

[mr_mini_me]

Thanks for commenting, AuntieJessie.

No food allergy tests done yet, though my immune system does seem to be correlated with food/diet or lack thereof (which is the same probably for everyone!).

I haven't had a blood sugar test yet, though I've had a urine sample test and that came back negative for diabetes, though I'm not sure if a urine sample is the correct testing method.

No parasite testing as of yet, Drs still seem concerned about and hooked on HIV... which worries me as a result. Or they just brush me off like I'm mentally ill, which while there probably is an element of truth, I don't believe the symptoms I'm feeling are just a result of anxiety. Just scared that maybe I've an underlying immune system problem and the HIV has sparked the immune problem and brought about these health issues while being undectable.

Oh, I'm being tested for lymes disease but awaiting results.

Many.thanks,

[mkh9]

One thing is do know how they did the Syphilis test? Did they do both RPR and VdRL or FTA.
mkh9