Infectious Diseases Community
Unkown virus
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This patient support community is for discussions relating to Infectious Diseases,such as: MRSA, Staph, Herpes Zoster/Shingles, Varicella (chicken pox), Coxsackievirus, CMV, Foodborne/Waterborne, Meningitis, C diff and other

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Avatar_f_tn
I messaged you. Take a look.
mkh9
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I'm hopefully going today. Yes it affects WBC. It is not common here in England either but it does affect mucous membranes causing dry mouth dry eyes etc. I too am putting weight back on.
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So you have NEVER been tested for htlv? Please keep us updated.
Good luck.
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I will keep you all updated. I have tested negative out to 19 weeks antibody to hiv and 12.5 weeks by rna pcr. This all started a week after I had my exposure. Never experienced before EVER. It can also cause frequent urination bladder problems etc. will keep you informed definitely
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Ps my tongue is not thrush. It was diagnosed as thrush but I believe this was misdiagnosis. It is very dry and coated but not thrush.
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If you dont mind me askin what was your exposure? Was it unprotected vaginal. Oral.. ?

What are your symptoms?
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My exposure was protected vaginal or unprotected oral both ways with a sex worker. I'm hoping the guy she saw before me didn't leave any of him anywhere. I had mild fever and sore throat 5 days after exposure. At 3 weeks I got a really dry mouth and lost 2.5 stone in 10 weeks. At 8 weeks got bad abdominal pain which I thought were lymph nodes. It is 20 weeks now and still have dry coated tongue. Weakness and pain in thighs and groin folds and lots of muscle loss in legs. Depression has also set in snd just have fits of crying and shaking. Was a healthy firefighter before this and now struggle to get out of bed in a morn
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Also it can be spread sexually and I had bleeding gums as I had just brushed my teeth about an hour before. I'm booked for a test on Monday and have been told window is 3 months although I am confirming that with a htlv specialist from York in England called dr Fabiola Martin. You can google her
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Have you been tested for Helicobacter pylori? Do you also have burning stomach pain sometimes too? It might be worth getting tested for. You do a urea breath test (gold standard) or secondard to that is the stool antigen test. The blood test doesn't check for current infection. So it wouldn't tell you if this current problem is caused by it if you did the blood test.
mkh9
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Hopefully it is prostatitis as Ukguy said his was. Also, the stomach pain could be Helicobacter pylori. I have seen a lot of people on here think they have STD related issues and they are missing some other problem. I hope the test for HTLV is negative and you can get better soon.  As I mentioned to Jaguar you can get the Urea breath test (gold standard for testing for H. pylori or the stool antigen test. If the HTLV and H. pylori come back negative you might also check with a neurologist regarding the muscle issues and weakness. BTW we are not supposed to give out names of doctors on here. It is against MedHelp policy to refer someone to a doctor.

Let us know how your test goes.  A lot of people have HTLV and are asymptomatic. How is your complete blood count? Is the white count normal?
mkh9
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Hi there, I have also been experiencing strange symptoms over past year and a half and doctors cant find a thing.. I have had HIV, Hep and all the other common std tests with no findings.

My symptons after protected oral and vaginal sex with sex worker in July 2013. After a few days my syptoms (symptoms) started..

Tingling in hands and feet
Loose stools
Itchy skin worse in the evenings
Red pimple like bumps on chest shoulders, back and scalp
Most of which come and go but the symptoms that have not gone away are..
Nasal drip or congestion..
Weight gain particularly on the waist and cannot seem to lose weight
Sore joints
I'm always tired
But the most irritating is the constant sore burning mouth and tongue, my tongue has a white coating, dry but sometimes waxy feeling and  most of the time have geographic tongue that comes and goes all the time... had all the thrush test, diabetes, thyroid, STD's... with no luck... I have got to stage that I am just trying to ignore it all as people think Im being Hypo....not that I complain to anyone, my wife just sees me playing with my tongue all the time

Strange thing is that I am seeing strange symptoms in my family members.

Wife and Son has same spots, sore joints, itchiness always tired and nausea that comes and goes, my son has also now developed tachycardia for no reason, we are a very healthy fit family so all these things are very strange..... might sound far fetched for some but these are facts....sorry for the long Post
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No further action was reported on full blood count. It all started after my sexual encounter that's why I link it to an std and didn't realise about doc names. I've been told off for going on about htlv so can't post anything regarding that till I get a diagnosis
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Avatar_f_tn
Im sorry that your goin thro all this, and I believe ur family symptoms have nothing to do with yours.

Your both sexual activities were 100% protected from HIV, and most of std.
So rule out these infections.

Ur most symptoms are similar to mine. But i preformed unprotected oral!
Did you kiss her? Like a deep french kiss?
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Avatar_f_tn
Well, I have seen many many times on here people get stuck about their sexual encounter that they have HIV or some other STD and despite being negative they still dwell on it. I"m not talking about the other issue you mentioned. But try to keep an open mind that it could be something else. One guy I was talking too was sure he had HIV and eventually I though he should get tested for Helicobacter pylori and he was positive. He has since been treated and the pain is gone. I am very happy for him. Another person actually had secondary syphilis and was getting rashes from that. He said he had been tested but I told him that the RPR test is about 20% false negatives. So when I see that the person's symptoms match a certain think I can sometimes tell what they may have by talking to them for a while. But it is hard when they have a barrier or mindset about something else. I am on here to help people and try to keep a connection with their symptoms. I hope that helps. Hopefully you will be diagnosed or just get better soon too. I will keep good thoughts for you.
take care,
mkh9
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Hi Everyone

Following this closely as I have similar symptoms and this is a very reason set of posts.

My background; I had sex with a working girl unprotected oral on me and protected vaginal in November/December.  Had a few similar experiences previously but no unprotected intercourse.

Recently, I developed an itchy anus for a time.  The Dr. had a lock and couldn't see any bumps or concerns and prescribed hydrocortisone 1% which did the trick.... although I still get a bit of phantom itch which I think is in my head.  

Two weeks ago I started to get a white tongue with a redish spot on it.  It doesn't hurt but my mouth does burn and I also have a sore throat. I was using tooth whitening toothpaste at the time and have since stopped.... but tongue and burning remain.  I went to the doctor he said it doesn't look like thrush but more geographic tongue.

I'm lined up for a bunch of blood tests, including all STD's, but can't take the tests until tomorrow and results will take over a week.

Other symptoms;
Head Ache
gurgling stomach
irregular bowel movements
fatigue/insomnia
excessive googling

My significant other (female) has also recently developed an itchy *** and toenail fungus..... all these things point to weakened immune system and HIV in my mind.

Any thoughts?
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Hi, well the burning  mouth can be from a lot of things like high blood pressure,geographic tougue (which you have) see list below from the Mayo Clinic.

    Dry mouth (xerostomia), which can be caused by various medications, health problems, problems with salivary gland function or the side effects of cancer treatment
    Other oral conditions, such as a fungal infection of the mouth (oral thrush), an inflammatory condition called oral lichen planus, or a condition called geographic tongue that gives the tongue a map-like appearance
    Nutritional deficiencies, such as lack of iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12)
    Dentures, especially if they don't fit well, which can place stress on some muscles and tissues of your mouth, or if they contain materials that irritate mouth tissues
    Allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or dental-work substances
    Reflux of stomach acid (gastroesophageal reflux disease or GERD) that enters your mouth from your stomach
    Certain medications, particularly high blood pressure medications called angiotensin-converting enzyme (ACE) inhibitors
    Oral habits, such as tongue thrusting, biting the tip of the tongue and teeth grinding (bruxism)
    Endocrine disorders, such as diabetes or underactive thyroid (hypothyroidism)
    Excessive mouth irritation, which may result from overbrushing your tongue, using abrasive toothpastes, overusing mouthwashes or having too many acidic drinks, such as lemon
    Psychological factors, such as anxiety, depression or stress

A lot of your other symptoms could be caused by anxiety. I don't normally say that but it is one thing.

Also diet (such as lack of fiber from plants and whole grains) can cause the gurgling stomach and irregularities some other things. Do you have any other symptoms such as burning pain in the stomach or diarrhea?

If you are not sleeping well you would be fatigued.  Some relaxation techniques can help such as not doing computer or exercise or drink anything an hour or two before bed except for pills. A relaxation CD or biofeedback breathing exercises have helped me with anxiety and stress. Also, regular exercises helps lower stress and helps you sleep better.

A lot of women can get yeast especially if she is a new partner even the first few years. Toenail fungus is modern man/womens common ailment. It is hard not to get it. If you get athletes foot and she steps on the floor she will get it or toenail fungus. That happened to me as well and I am healthy. It is not a sign of a weakened immunity.

Let me know if you have any other questions.
mkh9

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Avatar_m_tn
Thanks very much for your extensive and thoughtful reply.

I have a bit of indigestion and irregular bowel movements.  I have had diarrhea, but at the moment I would place it closer to constipation.  Again possible nerves.  Plus my itchy anus is back (slightly) again probably nerves.

I'm driving myself crazy waiting for test results, and I'm worried that the Dr. was wrong with his diagnosis of Geographic Tongue.  My sore throat is still there and my mouth burns, but that is relieved by gargling chloraseptic every two hours..... my lips burn somewhat.

Too many things going on to know if they are connected.

Worried.
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Hi, BTW Geographic tongue (I have it too) is often genetic. If you try metamucil every day it may make you regular. It seems to even out the water in the diet as it is made of fiber. Not sure about the itchy anus issue. could be anything such as fungus, or even pinworm. but a lot of people get Jock itch and that can get into the anal area. We'll see how that goes.

Hope your tests come back negative.  Regarding your throat. Do you have any pus (white spots) on the back of the throat or tonsils etc.? Any fever? Gargling so often with Chloraseptic may cause some problems (maybe the mouth burning). It is excessive.

Let us know how your tests go.
mkh9
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Thanks again for your feedback!

Gargling with Chloraspetic is the only thing that has kept the mouth burn in check... although as I lay here this morning after a decent nights sleep it doesn't seem too bad.  It has always seemed better after sleeping though.  But hopefully I'm coming out the other end of my Geographic tongue issues.

I don't seem to have any other sores in my mouth/throat, which is a good thing.  I've checked my temp a few times and it seems to be normal, although I have had some sweating (day and night) that just seems to come and go.  The Dr. indicated the glands in my neck were a bit swollen.

Possibly I just caught some sort of cold/flu at the exact time I had my first experience with Geographic Tongue?  The combination of feeling unwell and the look of my tongue has sure made me feel like something serious is wrong.

I'll keep you posted, and thanks again for the feedback.
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Hi Mkh9

Yes - H Pylori testing after my antibiotic round is negative but gastro wants to do a follow up breath test. I don't experience any sharp pains. More just a constant stomach gurgling and noises and some days where it feels a little more upset than others. I am really hoping follow up testing figures out if it is H Pylori because I'd like to figure out what is going on.
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That is good news you tested negative. I got one of the guidelines on H.pylori. I don't know whether your GI doc has this but hopefully so. It is from the American Gasteroenterological Association. It is a flow chart of what to do after treatment. It says if you still feel some symptoms the patient can be put on a PPI (like Omeprezole) for 4 weeks. This is an acid suppressant and see how you feel after that. the follow up  testing should be 4-12 weeks at the end of treatment. So maybe if he doesn't offer the PPI after this you might bring it up. This is for reading only it has a copy right on it. So you can read it but don't copy it. Just ask the doctor about the PPI if you haven't started one already. This is in addition to the triple treatment they should have given you. Two antibiotics plus one Proton pump inhibitor or PPI like Omeprozole.

Gastroenterology 2005;129:1753-1755 by N. Talley.

mkh9

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I just noticed I've developed some brown spots on my back 4-5 of them... non itchy about 1/2 an inch across of different shapes.... trying to get in to see my doctor, but very nervous now.

Could it be a different STD like Hepatitis or Syphilis?
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No doesn't sound like an STD. Could be a fungus like ringworm.
mkh9
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Also, keratoses a common type of non-cancerous mole like skin growth.
mkh9
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Thanks... they may have been there and I just never noticed previously.... I'm hypersensitive to everything about my body at the moment.
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Yes I have them too so that is why I knew about them. Next time you go to the doctor have them take a look. But they are usually rough or waxy looking depending on which type you have.
mkh9
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How big do yours get?  One of mine is about the size of my thumb.  The rest are quite a bit smaller.
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Most of mine are about the size of my index finger nail or so.  None as big as the thumb nail. But they vary in size. It may be seborrohic dermatosis. Can you tell if they have a waxy look? Are they flat or raised? The seborrhea is waxy looking and the keratoses are rough on top. But if it is brown not black it is probably ok. The size doesn't always matter. But the color, asymmetry (one side is different from the other), one black mole that grows on top of another, one that bleeds all the time, opalescent, one that gets bigger. You should always get an annual check up for skin cancer anyway. I go in if there is anything suspicious. I get my husband to look with a magnifying glass at mine and we both go in if the look weird. So what if you are wrong. You learn from it. It is good to learn what is normal and not normal. Just try to not freak out over them.
mkh9
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Thanks again for your feedback on here.

It is hard for me to tell as they are on my back, but they are mostly flat, a lighter shade of brown.  I don't think they are waxy, or overly rough, but you can certainly feel the difference between then and the skin beside.  Going in Friday to get them checked.
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Yes since they are light brown they are most likely nothing to worry about. But it is good to get checked out if you never have.
mkh9
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Hey All - quick update on my story for those still visiting thread. Got my h pylori breath test result back (follow up to stool test that was negative) and was also negative. So good news is antibiotics killed h pylori, bad news I am still dealing with my symptoms (sudden onset stomach issues that persist, light sweating underarms and dandruff) which seem to suggest something autoimmune or nervous system related. All my other bloodwork is well within normal range. Did 17 week oraquick oral swab just for my own sanity and that was also negative.

Have annual physical next month and if still experiencing all symptoms then will look into some of the less well known HHV strains like 6  and 16 and then HTLV. Or get referral to infectious disease doc if he can't help. Only concern with each of these is there is no treatment for any of them so knowing seems like it might be worse than not. There is some scary stuff out there. :( Wish I had read this thread before thinking with little head.

Would love to hear from folks like Tufty, itchyburn, and heywood if they learned anything from recent test results.
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Well, that is good news about the H. pylori being gone but you may still have some issues with stomach erosion from the H.pylori. You could still take a PPI (Omeprazole) for about 4 weeks. See if it feels better. That is the guideline after the triple treatment. Regarding your dandruff. It may be seborreic dermatitis. I was told to use baby shampoo and use Cetaphil restoraderm on my face. The flakes went away. I was using head and shoulders for a long time and  it didn't work and this did the job. But if that doesn't work there are stronger things you can use. See link below. You might want to see a good dermatologist (one you trust).  The sweating is probably a hormone in balance. For some people it is normal. You can get several hormones tested. One is that it can be a thyroid problem, diabetes can cause this or infection like TB (not a virus). Also, being out of shape. Most cases are harmless.
http://www.webmd.com/skin-problems-and-treatments/features/is-your-excessive-sweating-caused-by-a-medical-problem

Hope this helps.

mkh9

http://www.mayoclinic.org/diseases-conditions/seborrheic-dermatitis/basics/treatment/con-20031872
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Avatar_m_tn
I've been travelling, so haven't been able to update.  :(

I was tested for the main STD's; HIV, Syphilis, Gonorrhea and Chlamydia and negative for all.  

Most of my other symptoms have dissipated, but I still have an itchy anus and/or pain at the base of my spine.... it had gone away for a week or so as well, but is back.  :(

Going back to the Dr. next week, and not sure what I should do next.
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Just an update that my tongue has a bit of a white coating again... still experiencing pain/pressure in my lower spine... not really an itch any longer.  Also, my stomach is back gurgling a lot.

Going to the Dr. in a couple of days and will post the results.  Starting to wonder if I have some sort of parasite?
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Maybe the itchy anus is a yeast or fungus? Can try a antifungal cream or spray. Did you do anything to injure the low back or base of the spine? Maybe see a orthopedic specialist and/or get an MRI?

Have you been anywhere where you could get a parasite? What country do you live in? Have you been out of the country? Do you have any diarrhea, abdominal cramping? Have you tried any new food that may give you a food allergy or too much spices? new Spices?
mkh9
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I suspected a fungus as well, and used some cream initially.  The itch is basically gone but the lower back/spine (coccyxs area) has some pain... more like pressure.

I live in North America but travel all of the US, Canada and the Caribbean, so I certainly could have picked up a virus.

My other symptoms are change in bowel movements (looser), stomach constantly gurgling, tongue with a bit of a white film and an "ashy" taste in my mouth at times.  Also fatigue, poor sleep and night sweats.  I've seen a bit of a weight loss, but could be due to just not feeling well and not eating as much or as well as I should.

To me it does sound more like a parasite than an STD, but as I haven't been tested for anal gonorrhea or Herpes, I still have concerns.  Plus it could be an unkown virus of some sort.

Any thoughts/feedback are appreciated.
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It wouldn't hurt to get a stool ova parasite test done. Repeat it in about a week. You don't have cyclic night sweats do you or fevers? If yes then I was wondering about malaria if you had traveled to the Caribbean  lately. Also, you could get a TB test done. The best is a quantiferon gold test for TB and then an Xray. Any cough? The back pain could still be an injury or something else.
mkh9
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I do have a cough/cold off and on, but nothing significant.... main issue is a pressure feeling in my lowerback/tailbone at this point.  All the other symptoms are minor and not concerning.... but could be partly caused by whatever I have.

Not sure what you mean about cyclic night sweats.... I have them most nights at the moment.
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It sounds like you don't have TB or malaria. The cyclic night sweats are when you get them such as every 10 days for example.

Sorry about the tailbone issue. You should get a MRI of that or see an orthodoctor to make sure there is no damage. But it could be a bruised bone.

If you still have diarrhea you can get the ova and parasite test.  

mkh9
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Thanks.... I didn't do anything to injure it, so I suspect either parasite or infection.

Trying to get into the Dr but it may be next week now.  :(
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My Dr was able to see me today.  Had a look and said he couldn't "see" anything.  He's ordered an xray (although I haven't had an injury to the area) and also is going to get a stool sample tested.

He indicated they don't test for parasites here as they are so rare.  :(  But they will culture for bacteria etc.

I guess I'll get that done and see if there are any results.

Still feeling unwell.
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Well, he is right in that bacterial food poisoning is much more common than getting a parasite. But I was taking into account your travel.  You can get parasites here in the U.S. I worked at a county hospital and saw them fairly frequently from people that lived in the U.S. It is often Giardia from hiking and drinking water or travel to other places. Also, hookworm and some other parasites can be acquired in the south and so forth. Bacterial food poisoning usually doesn't last that long although you can carry some. It would be good to get the stool culture and Ova and parasite test. The stomach problem could be something else. Do you have any stomach pain or burning?
mkh9
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No stomach pain or burning.... but lots of gurgling...and loose stools of late.
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Well then you probably don't have an ulcer. Loose stools can be from a bacterial infection, viral, parasite or some type of  gastrointestinal issue. Also, a allergy to some food. So it is a matter of figuring out which one it is.
mkh9
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I had a back xray today, and got the stool collection kit, but of course I've gone from loose to constipated now.  :(

Still feel very unwell, slept 3 hours maybe last night.  I'm hoping for some type of result/breakthrough from the stool sampling.  Maybe it will uncover a bacterial infection and I can get some treatment.
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What type of stool collection kit is it for ? Is it for a bacterial or parasitic infection? Since you are now varying from diarrhea to constipated maybe it is not an infection and is more of an irritable bowel type issue. We'll see. Try eating lots of whole grains, fruit and veggies and much less meat. See what happens. Drink plenty of water (8 glasses of water and/or fluids a day). Hope you feel better soon.
mkh9
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Thanks... the stool culture is bacterial only, no parasite testing where I am.  :(

I've been trying to eat lots of fruits and veggies and drink lots of fluids to flush things out.

I think the constipation was largely "stage fright"  all stools since have been either loose or very soft.

I know Dr's are reluctant to prescribe antibiotics these days, and for good reason.  However, at some point should I ask if a broad spectrum antibiotic is worth trying?  Or would this simply be dismissed without other evidence?
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I would wait for the stool culture to see if you have any bacterial pathogens rather than take a broad spectrum antibiotic without knowing if you have a bacterial infection or not. If it comes up positive then they will treat based on the organism. Or you can argue your point about getting a parasite test at that point (if it is negative).
mkh9
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For sure... I was meaning if the bacterial test doesn't show anything.

I guess I can try to argue for a parasite test although he claims they just don't do them here.... I guess I could also see about an anal swab STD test even though I've never received anal sex.... maybe travel somewhere else where they do these tests.

Grasping at straws I realize.
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This doctor is wrong that there are no parasites in the U.S. They are more rare here than other countries but they do exist. To name a few we get tapeworms, some round worms, hookworm from the south when walking barefoot in the sand, Giardia (from drinking fresh water when hiking), some people that have low immunity get Cryptosporidia and others can it but don't get diarrhea from it. If you travel to Mexico and the Caribbean you can other amoeba. I have also seen Ascaris and Tricuris here in the U.S. and pin worm (usually in children) and lower economic status but not always. Even San Diego gets rare malaria and probably Texas. We have subtropical weather. So I assume Florida does and you could have been exposed to Several things like Chikungunya, Malaria, Dengue etc. when you went to the Caribbean. But you don't have those symptoms. You would have severe joint pain and very high fever. I'm just saying there are a number of parasites you could have been exposed to even if these are not what you have.  Funny if you stretch it a bit Trichomonas is a parasite as well as viruses. LOL. My 2 cents.
mkh9
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Yes, I may have to battle for a parasite test.

Does Trich also infect the anus?  Would they need an anal swab to test?

I have to do some research on that one.

I'm praying something shows up on the bacterial stool test so I can start some sort of treatment.

I really feel like I have an anal infection and it is at the root of these problems...... I realize the Dr. can't just prescribe an antibiotic on spec, but have a feeling that is what I'll need to fight this infection.  But how to choose the right one I guess?
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Well the doctor has to figure out if you have one and then if you do which one. Yes trich can get into the anal area but only if you had anal sex and if you didn't use protection. It can cause itching and burning but so can yeast, and fungi.
mkh9
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That is the troubling part.... I haven't received (or partaken) in anal sex.... yet the root of my symptoms are in the anal area.

Troubling to say the least.
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That is why it can't be trichomonas.  Trich doesn't cause your type of symptoms either. So, lets see what the stool culture shows. If not go from there.
mkh9
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most recent update although not much of an update. Did 6 month tests for HIV 1 and 2 AB, HIV RNA,  HTLV 1 and 2, CMV, EBV, Thyroid and free T3 and T4 function and all other STD's. Everything negative or normal. Doctor pretty much has nothing else for me. Maybe this is stress. Will let things ride for a couple months and see if symptoms subside. If anyone gets any new information or a firm diagnosis let the board know.  
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Thanks for the update.
mkh9
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Hi Bro, I want to join this community as well. I too couldn't diagnose the cause for my illness.

On 4.5 months ago had oral sex unprotected with csw from Thailand.. After one month had severe HIV symptoms thought test show negative.
I never got sick and visited hospital for last 3 years and ate healthy, no sugar and daily green tea , etc.
Symptoms:
1.) harshness of throat, went away next day
2.) congestion in throat - till now
3. )White patches - till now  
4. ) Severe brain fog and no concentration
5.) muscle pain
6.) Red blisters on hand and chest
7.) joint pain and till now for 1.5 months. Getting sound while walking.
8.) Cold and till now for 1.5 months.
9) problem in breathing sometimes due to nose block.
10.) 4 kg reduced between 4 and 7 weeks and regained later.
11.) Got mouth ulcer thrice in 4 months.
12.) Excessive sweating both day and night
13) No concentration at all.
14) Dont know where i m going while walking
15) Poor memory
16) no libido ... Next to zero.

HIV tests:

4th week - Elisa - negative
7th week - cmia 4th gen - negative
7.5 week - rapid test - negative
8.5 week - HIV duo test - negative
10 week - rapid test - negative
11 week - viral load pcr RNA test, non detected
12 week rapid test - negative
16 week - rapid - negative
16.2 week - Elisa 3rd antibody - non reactive, hcv antibody - negative
18 week - HIV DNA Test - Negative

Cd4 test:

7.5 week - lymphocytes - 17% , absolute cd4: 550
8.5 week - lymphocytes - 20% , absolute cd4 : 798
11 week - viral load pcr RNA test, non detected, absolute cd4 : 330.
15 week - absolute cd4 - 490
16 week - lymphocytes - 28%

Also the complete Wbc was more than 13000 during 7 weeks and now it is dropped to 9400.

Can you please advise me whether this is due to HIV some rare subtype and not deducted from the tests . I never got sick like this before and looks like something wrong with me..

Also the cd4 fluctuation is normal for HIV negative ppl?
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Avatar_m_tn
Hi Dev,
I can totally relate to your post, am going through the same thing. My exposure was 5 months ago (beginning Nov 2014), also in southeast Asia. I have 9 negative HIV tests but still a range of troubling symptoms, including dry mouth, white coated tongue, spots on chest/back/shoulders, angular cheilitis on corners of mouth, folliculitis, occasional loose stools and fatigue and malaise.

In Thailand , the main type of HIV going around is subtype E (or otherwise called CRF_01 AE). It seems this strain is more aggressive than other HIV strains, and goes to AIDS quicker if left untreated.

However, looking at your results, you have had the best and most sensitive tests possible, including PCR and DNA. You have also had a very good variety of tests, from combos/rapids etc - so definitely, if you had HIV, it would have been picked up by now. I would safely say you do not have HIV.

However, from your CD4 count, it seems like you are suffering from another illness. Have you tested for other things, like EBV, CMV, and other STD's?

CD4 fluctuation is quite normal, an HIV specialist doc called me it fluctuates a great deal even within a single day. The fact is, most of your readings are >500, so I wouldnt be too worried. But there are other illnesses that can cause lowered CD4. By the way , have you had your CD8 checked? This can also give a clue as to what type of illness you are suffering from.

If I were you, I would turn my attention away from HIV (you definitely dont have this) and look towards other illnesses. EBV and CMV would be a start, but there are also other less common viruses like XMRV, HTLV, etc which some people have talked about on these forums. I dont have much knowledge of the two latter ones.

Please keep me updated on how you get on.
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Avatar_m_tn
I also noticed that your WBC was high at 7 weeks. This suggests you were fighting some kind of illness then.
Since then it has returned to a more normal level. So maybe the acute phase of your illness is over, and you are now in the convalescence phase.
Have your symptoms shown any signs of improving?
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Avatar_f_tn
It doesn't look like HIV. You are pretty much normal on the CD4 count except for one time. That could have been another virus that caused that or a error in testing. Have you had a syphilis test? Also as CT scan of the brain? Since you have the memory problems it would be good to get the CT or MRI of the brain to check for problems there. Also, the rash or red bumps on the hands and arthritis could be a sign of Syphilis. It would be good to get that done. You are fixed on HIV but it could be something else. Your tests are all negative. So time to move on to figure out what else it could be. Since your WBC count went up to 13,000 it could be bacterial not viral. Also, you have had fevers. Another thing you may want to check is for TB just in case. Do a quantiferon gold test and a lung xray. These some things to think about.
mkh9
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Thanks wanton.. Really it is good to discuss to get some more insights on this. I had tested ebv alone which was neg at 4 month..

Also I did western blot after 4 month and all bands came as negative.

I will try other tests as u said. But my doc who is senior ART specialist said me to give myself to his custody for another 50 days. He said I have mind problem and he has given anti depression tab for 20 days. I will update here on any insights or any results..

Also what was your exposure? My exposure is vaginal lick for 10 secs with no fluids. But I afraid whether she might be in her periods where I got into a contact with her blood.

I sweat like a falls nowadays. No clue so far.
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Thanks mkh9 for the prompt reply. I had tested for syphillis (syphilis) twice once at one month and 4 month and it was negative. I don't have cough and anyhow I will do the tb test next time. I was working in a uk based software company and quit the job due to loss of concentration and jobless for 2 months. Previously I was the top performer there. Looks like some pathogens affecting or it is just depression. Fingers crossed... Will update you after my doc get any insights on this ..
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Hi wanton. My symptoms are not improving except weight loss. Now gained 14 pounds in 2 months. Joint pain and muscle pains are getting worse. All d day and night feeling very sleepy..

Also I tested for thyroid , RA factor and autoimmune and all came negative. Very strange...

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Avatar_f_tn
I would still check on the TB. Also, if you just had the RPR done it can give a false negative 20% of the time. So getting an FTA would be a good thing to do.

Since you are having these issue with your head the MRI or CT would be a good thing to do. Maybe it is stress or depression. After the 20 days or whatever then if you still have it then I would that done if  you can to rule any structural problems out. Another thing to think about is Lymes disease and parasites. You have no fever so night sweats could be a hormonal problem or stress. But the white count was up and that isn't stress. I don't think it is related necessarily to this incident but that you could have been exposed at the same time to something around that time to something. I am looking at this with an open mind. I have seen many people on here who are certain it is due to their exposure and have found quite a few that had something else.
mkh9
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Avatar_f_tn
Hi Wanton,

my last cd8 was around 530.. My cd4% was above 40% in all the tests and even when it reads 330. Do you have any interpretation on these numbers??
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Sure mkh9.. will do a tb test. Also my test at 4 month was vdrl and doctor said it is shyphilis . Also I have a plan to do CT or MRI next week if it doesn't subside . thanks a lot for all d suggestions..
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Avatar_m_tn
Your CD4% is strong. Low CD8 is also a good sign.
Typically in acute HIV, CD4 falls rapidly first, and then bounces back, but usually not to previous levels. CD8 also starts to climb (often into the 1000s) and this remains the case.
Your CD4 on the other hand is showing consistency around the 500 mark.It isnt really showing a big spike or drop.  
Your CD8 has also remained low .
So these numbers, to my knowledge, are not at all indicative of HIV.
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Avatar_f_tn
Okay. Let us know how it goes.
mkh9
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Update.

Many of my symptoms are better and I'm feeling a bit better.

However, I continue to have anal itch and tailbone/anal pain/pressure.

Stool culture came back clear, also had an xray on my tailbone that was fine.  Dr. is suggesting a colonoscopy to see if that shows anything that might be referring pain in the area.

Wondering if I should be pushing for anal swab STD tests and/or a parasite test?
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I guess it might be good to get the colonoscopy. I have had two. Not too bad as they put you under. You can ask and make sure they do. The hard part is they day before you can only eat jello and broth. Then you take pills or whatever prep they tell you. I asked for the pills. You go for for the rest of the night. for about 4 hours. It didn't make me cramp. It will give them an idea of any thing wrong inside. I'm not so sure that you need an anal swab for STD's. They would most likely see any worms if you had them with the colonoscopy as well as fissures and other problems.

I don't recall if they checked to see if you had an enlarged prostate?  I think it is best to follow up with the colonoscopy due to the pain issue to rule this out.
mkh9
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Avatar_m_tn
Thanks for the feedback.

I've only had a digital rectal exam, which the Dr. felt was fine.  He did do a PSA test that was also fine.

I have a feeling like I have some sort of anal infection/fungus.  The fungal cream seams to make it a bit better when initially applied, but it hasn't gone away completely..... gets worse between applications.

Colonoscopy this week....I assume it would find any/most parasites if there are any?  if it doesn't reveal anything I guess I'll push for a rectal swab STD test.

I should mention, the only other symptom that persists is my tongue is white (comes and goes a bit).... much like it was when I was initially diagnosed with geographic tongue.  Other than that my energy is better and less pain/numbness in my legs etc.  So better overall, but the itch/pressure in the backside is disconcerting.
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Avatar_f_tn
Ok. Well I think it is good to get the colonoscopy done and over with. If it is negative you could still get a parasite test done but the ones that the colonoscopy wouldn't pick up you generally would have diarrhea. But you could try. The rectal pain should be checked out. I wouldn't worry too much about the white tongue it probably is bacteria. You could have them check for yeast to see. But most of the time even if it looks white it isn't yeast it is bacteria. If all is negative you can try terbinafine for the anal itch.
mkh9
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Avatar_m_tn
Thanks MKH9!

Could the tongue bacteria and anal itch be linked?  Could they do a culture on my tongue bacteria to see what it is?

Not familiar with Terbinafine.... currently using Clotrimazole as prescribed by the Dr.
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Avatar_f_tn
I doubt very much the tongue bacteria and anal are related. You could check for yeast yourself by using a tongue scraper or the back of a toothbrush that has a tongue scraper and scraping the white stuff and if it bleeds or hurts (without digging in) it could be yeast. If not and comes off easily it is usually bacteria. Yeast smells like bread while bacteria stinks. LOL. They usually don't do a culture of the tongue unless you want a yeast culture which would be a fungal culture. They wouldn't need to do a culture just a smear to tell if there is yeast. It is easy to see. Unless you want to know if you have a resistant strain. Then they would do a test or culture.

If the Clotrimazole works that is good. If it doesn't either it isn't a yeast or iti s resistant.
mkh9
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I ended up having a flexible sigmoidoscopy instead of a colonoscopy.  Everything looked good with it.  The Gastro Dr. was only somewhat concerned about my B12 being low and wondering what the cause of that was.

He told me to go on a more bland diet, try to eliminate refined sugars, don't drink caffeinated or fermented beverages and start taking a probiotic.

I've been following those instructions for about 3-4 days now and things seem better.  Also still using the clotrimaderm cream for my anal itch.  I think the combination of b12 shots, probiotic and clotrimaderm are working, and suspect I have some sort of fungal infection that is at the root of all this.

I'll keep the diet up for a couple of months and see if things get back to normal.  Not sure how long I should/can use the clotrimaderm..... or if I should continue B12 shots or transition to pill form.  I'll have to consult my Dr. about those things in a couple of weeks.
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Avatar_f_tn
Well, has the pain gone away? The sigmoid doesn't cover the whole intestine. But did it cover the area you had pain in?  Are you vegan? If not why would your B12 be low? That is the question. A couple of things is atrophic gastritis and pernicious anemia can cause low B12 if you are not vegan.  Also, atrophic gastritis can be caused by infection with a bacteria called Helicobacter pylori or auto immune (Hasimotos thyroiditis) also. Doctors don't seem to take H. pylori seriously even to this day. Even though there are new guidelines with the American Gastroenterology society. So in my opinion you need to get to the bottom of why your B12 is low not just sugar coat it by taking supplements or injections.  Some tests  you can do:

1. Hashimotos thyroid test
2. Complete blood count and Iron, vitamin B12 in a couple of months to follow up after the injection and a ferritin. The complete blood count will help to see if you have pernicious anemia. Also, these tests can look for iron deficiency anemia.
3.Yes I would transition to a once a week B12 pill. Sublingual (under the tongue) methylcobalmin form 5000mcg. Unless your doctor wants you to take more to start with then go down.  Methylcobalmin is absorbed better than the other types. You can get it at Costco or other stores.
If you are low in vitamin B12 your fingers will tingle or you may get other symptoms if it is worse.

The H. pylori test is a special urea breath test. You have to get that at the gasteroenterologist. Usually, you have stomach pain, or reflux, or intestinal pain. But not always. You can carry it around for a long time without symptoms and then all of a sudden you will start getting symptoms and it can lead to stomach cancer and intestinal cancers. Although it takes a long time. It can cause ulcers and bleeding which can give you anemia and low vitamin B12.

So these are some things to think about. If you are interested in the urea breath test or stool antigen test I can tell you more about them. The urea breath test is the gold standard though. It looks for current infection.
mkh9
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See last post. I wanted to add. I didn't mean to worry you about H. pylori and stomach cancer or intestinal cancer. It is rare compared to ulcer or reflux and anemia. I should have said so early on. Ulcer is the main problem it causes. But generally a lot of people don't have symptoms for years and then they may or may not get an ulcer etc. But generally it can cause problems and disrupt the stomach acid etc.
mkh9
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Thanks for the responses.

I agree I'd like to understand why my B12 is low.  I'm not a vegan and eat plenty of meat etc. which should keep the levels good.  The Gastro Dr. indicated that it is generally an absorption problem in males.... but didn't seem too concerned after doing the scope as it came up clean.

I've been trying to eat a low sugar diet and avoid all the things the gastro mentioned; coffee, tea, cola... cut out all sweets and trying to minimize bread.  Mostly eating chicken, veggies, fruits and yogurt.

My back pain is better, all though flared up a bit today.  Still have itch though.  It generally is better with the Clotrimaderm cream.  I put it on in the morning (7am) and evening (10pm).  The itch generally flares up in the early evening and I may need to start putting it on at 7pm to space it out evenly.

I've noticed a bit of a red "flushing" on my neck the last few days as well.  Not really a rash, but definite redness.  Someone today asked why my neck was so red, so it just isn't in my head.

I'll be going back to my GP next week to discuss the B12 issue and see if he has any other thoughts.

I don't really have any stomach pain issues or indigestion that would indicate something like H Pylori.

Monday/Tuesday this week I felt like I was getting back to 100%, but Wednesday/Thursday saw more pain and itching.  :(
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Yes I don't believe the idea that "men" have malabsorption problems unless they have a problem with their pancreas. That is ridiculous. Not many people have low B12. Was it just slightly low? If so then it isn't that big of a deal. But if very low then it may be an anemia or something else. Well, I have said what I think. Yes it probably isn't H. pylori causing the problem if you have no symptoms. It is too bad you didn't get the colonoscopy instead but hopefully it is a dietary issue or something else. You also need to eat whole grains. No white bread or white rice. See what the GP says and if the anti-fungal cream works. If not it could be pinworm. Although, it is not that common. But it does come out in the early morning and late night.
mkh9
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But then I think the doctor would have seen the pinworm on the sigmoid most likely.
mkh9
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I also suspect they would have seen pinworms with the scope.

Right now I shower in the morning and let the spray focus on my lower back and anus and apply the Clortrimaderm after.  Then have a bath at night with Epsom salts and again apply the cream.  

Combined with this I'm taking a probiotic and trying to just eat meat and veggies (largely) as well as yogurt.  I am eating a bit of fruit, but trying to avoid all refined sugars.  Not drinking coffee, tea, cola etc.  Mostly water with a bit of Cranberry juice.

It seems if I follow this regimen the itch is largely managed.  I get a bit of itch in the late evening before I bath/put on the cream.  As well as some during the day if I sit to much.  The back pain is mostly gone, but also flares up if I sit to much.  If I vary from the regimen the itch/pain also flares up a bit.

Great to manage it, but I'd like to eliminate.  I'm also not sure how long I can/should use the Clotrimaderm cream.  But I'll get my GP to clarify next week.
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Avatar_f_tn
That is good. Sounds like you have it pretty much under control. Keep yourself dry after showering or bathing. Fungi love moisture.
mkh9
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I have posted on here and just wanted to give an update. I am still experiencing a few symptoms and it's been close to 2 years since symptoms began. Thinking back, my symptoms have eased up quite a bit compared to how I was during the first year.  I also take 1200mg of gabapentin and 50mg of Amitriptyline and 100mg of doxycycline every night so I don't know if that has something to do with it. I took a medicine for candida a couple months ago and it seemed to help some but I picked most symptoms that it helped back up after stopping. My biggest complaints now are stomach cramps and ibs symptoms.  I also have really bad joint pain. Tongue is closer to normal. Will sometimes have the irritated scrotum problem. I also have a burning sensation in my feet.  There are a few things I've noticed.  I do think it's contagious and not from sex but from saliva. My roommate who is a male started having some strangely close symptoms to what I've been going through about 2 months ago. We are both very heterosexual, however we share the same bathroom. And smoke after each other. I think everyone thinks it's an std because most people kiss when they have sex so they think it's related to sex. I will mention again that I've been tested for everything sexual transmitted along with a ton of other tests. I finally got something to show up in one of my tests I had a couple weeks ago.  My doctor decided he would do a case study on me and start testing for a ton of random stuff. I had an ANA test which came back very positive. This shows that my body is producing an excessive amount antibodies that are attacking my body. My doctor went ahead and ran a lupus test on me which I'm waiting on the results.  I know for a fact that certain foods cause me to have worst symptoms and imflamation. These being sugars, beer, sodas, and a few others. This led me to believe it could be candida related but I'm not really sure.  I know my doctor right now thinks he is on to something with my ANA test coming back.  I don't know if I really think the lupus test is gonna come back positive but I'm highly convinced it's not HIV. If any of you have the same thing as me it's on overactive immune system problem which is the exact opposite of what HIV is. HIV is under active and not having the ability to fight sicknesses whereas this is an over active problem.  I'll keep you posted and let you know what I find out.  I've read some posts about symptoms subsiding a little after 2 years.  I know I've improved at least some and am coming close to the 2 year mark so I'm hopeful I'll continue to get better.
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Hi, I just wanted to mention that several things can cause a positive ANA besides Lupus. One of them is Lymes disease. I don't recall your history but you might want to get tested for that if you haven't yet. The fact your are on Doxycycline rang a bell too since that is the treatment for Lyme. So also I wouldn't believe a diagnosis of Lupus unless you have at least 6 positive tests for Lupus. It is the most misdiagnosed tests. So, your anti-DNA, complement, I would to look up the rest to make sure which ones have to be positive. I try to tell people this because my friend was misdiagnosed and on treatment for 30 years. So, something to be aware of.
mkh9
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Avatar_m_tn
I sent you a message with some specific things I'm trying to figure out. Thanks!
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just wondering bhb if you had a candida test done to see if it was in the blood ?a friend of mine is going through similar issues and so far we have found candida in his blood .p66 and p41 wich they attribute to lymes diseaseand we also found lesions on his brain .we found this through ideas and suggestions we had for each other .but even though we found them the dr says they are ok to have .i myself had an interesting find that i carry the atp7b gene .wich it looks like i am a carrier for wilsons disease .they are going to investigate further now.
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Avatar_f_tn
Did you find actual yeast in the blood? Did he have a high fever?  The markers are different than actually having the active live yeast in the blood culture.
mkh9
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Try Blastocyst hominis.... read Bad Bugs and peoples experiences. It is very serious for some people
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Blastocystis hominis does not usually cause problems for most people unless your immune system is not working. Most of the time it isn't a pathogen. But sometimes it causes diarrhea. It usually clears on its own.
mkh9
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The abdominal part I agree with but if you go to http://bhomcenter.org/ you will find that a lot of these people have strange neurological type problems post infection. Rashes, itchy skin, cognitive problems... I do not believe everyone on your the site has blasto but I believe something has damaged the nervous system and immune system of a lot of people globally. My only question is how is the body damaged in such a way to be so long lasting in so many people? I believe all these people are very serious about their health concerns which is falling on deaf ears of the medical community. More because they really do not know what is going on. They would rather put it down to being psychological and dismissing the patients concerns. An unknown virus may be the initial cause of your symptoms but the damage seems so long term that something  else might be at play here. Not that this helps in anyway. Many long lasting medical conditions from Lyme, Chrones, Fibro, Lupus  etc may all share a common source. However we study them as if they were different things. Just a thought.
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