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Certain HIV positive, but negative tests (Page 135)

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September 24th, 2016
Hey all!

I've read this forum from start to finish and like you I've got no idea what's going on with my health!!

I've had the below symptoms
Fatigue
Night sweats
Nausea
Joint pains
Leg weakness (intermittent)
Stomach growling (very rare now)
Diarrhoea (once)
Dizzy ness (rare)
Lymph node pain in armpit and knees (often)
White tongue (normal according to doc)
Intermittent swollen throat (often)
Shaking feeling (often)
Peeling fingers (often)
Headaches (rare)
Sole of my feet hurt (intermittent)

Now I've had no specific exposure!! All I can put this down to is being around a few people at work that seemed to have a cold/flu.

I became ill approximately 2 weeks after this with night sweats initially then the rest of symptoms have spreaded over 7 further weeks!

I googled the symptoms and guess what popped up HIV.....that freaked me out and I went to my GP and asked what his thoughts were! He didn't think HIV just a viral infection and said to rest and he took some bloods..bloods came back normal his last words are your fine.....I didn't accept that and went to the Gum clinic and tested for HIV negative!! I'm truly lost my family all seem to be coming down with similar issues especially my wife but she seems to shrug it off!

I'm in the UK if anyone would like to talk please feel free to email me I certainly could do with people to talk to right now I'm in a bad place mentally!

As for the guys that have been here from the earlier days (scared adviseme Tony ustas) and more recently (jammy rider and many others) try to be strong I'm certain this is not HIV based on my scenario!! Something is very wrong here very wrong indeed.
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replied September 25th, 2016
Experienced User
A question for justgotserved - was the escort African? And please post all your lymphocyte subsets. I am particularly interested in the cd4 and cd8 counts and what the ratios are.
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replied September 26th, 2016
Hey justamatteroftime if u look at page 310 I have my cd4 cd8 ratios on there, as well the escort was black but as far at African I'm not sure about that. Do you have any good advice for me cause me , my wife and kids are having symptoms with no diagnosis and I'm scared I won't be able to get a diagnosis or treatment and something bad happens to my kids God forbid .
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replied September 26th, 2016
Experienced User
Hi there is no page 310 could you please copy and paste the numbers.
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replied September 26th, 2016
Repeat of my first post on this forum


Hey wats going on everyone. I have read every post on this forum and see that a couple of people are still here updating everyone which Is good I really appreciate it. I just can't believe 6 years with this forum and no1 came up with a solution yet. that's surprising and disappointing. Unfortunately I'm in the same situation as u guys . I have been having symptoms for 3 years now exactly. I'm married and had 2 kids before i got angry with my wife one day and went and had sex with an escort with protection she smiled and whispered yes after I ejaculated that was very fishy to me.A week later I had sore throat, skin rash on shoulder, stomache pain for a month and lost like 10 pounds. Lymph node on neck. I took a couple Elisa hivtest came back negative though I was alright so had 2 kids with my wife after symptoms and she was tested for hiv during pregnancy as well and all came back negative . Unfortunately my wife had all the the same symptoms as me as well. So up to now I tested for h. Pylori, hep c , hep b , hep a, syphlis, cytomegalovirus, chlamydia, htlv antibody all NEGATIVE. So tested with dozens of hiv oraquick negative, western blot at 6 months negative, 4th generation negative , had both pcr ran qualitive and quantitive both negative , ANA test negative, rheumatoid test negative,hiv multi spot replacement test of western blot more improved still negative, even a $500 test Abbott realtime test for rate strains negative , been getting cd4cd8 tests for a year now and they look off first time was before a year 7/22/15 cd4 948, cd8 816 , lymph cd4 39.5 cd4 /cd8 ratio 1.16, 11/7/15 cd4800, cd8 897, lymph cd4 34.8 cd4/8 ratio .89, 12/12/2016 cd4 888 , cd8 908 lymph cd4 35.4 , cd4/8 .98, 2/16/15 cd4 816, cd8 874 , cd4 lymph 35.6 , cd4/8, 6/7/2016 cd4 910, cd8 1014, cd4 lymph. 35, Cd4/8 .90,
Me and wife symptoms now
Joint pain her hips me my heels
We get sometimes wrist and elbow pain
Inside mouth ulcers a lot
We have consistent throat clearing for a year now non stop and is getting annoying doctors prescribed allergy medicine and acid reflux med and now help
Loose stool every month or so
Farting a lot
Lymph nodes once in a while
Some fatigue
No weight loss if anything weight gain
I'm experiencing hair loss
New white hair growths do both of us
In conclusion according to my cd4 cd8 test my cd8 is too high and climbing and cd4 dropping and will go back up but never to my first test which was 948 which is 910 now least hiv patient drops cd4 is 40 a year. I'm 100 percent sure I have hiv and I infected my wife and my 2 kids have them and my other 2 kids caught it too either from using wrong toothbrush or don't know exactly how , I can't believe my stupid careless actions I decided u to hear out of anger and affected me and my whole family cause my stupidity it's been so stressful for me because job effects infants more and can lead to serious health issues and death and I am so scared for them .my kids experienced my loose stools every once in a while and had couple rashes all of them as well , I pray to God everyday just make me sick and not my family for my actions. I know for a fact from everyone's symptoms and mines it has to be hiv all the symptoms go back to hiv, doctors and infectious disease doctors think I'm crazy for saying I got hiv but they got no answer for my symptoms that's crazy now. Wat if it is the NON HIV AIDS and that's y it ain't showing up in any test please people I need ur help and advice let's find a solution I can't wait till it's too late and lose my kids. if it comes down to having HIV fine I'll deal with it if I have no choice just give me and my family medicine so we can maintaine a decent life but doctors won't with no diagnosis. A cure hopefully ain't too far out the way researchers and scientists say at least 10 years . Please people I need help I beg u and I pray for all of u guys for a solution
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replied September 27th, 2016
Experienced User
Hi Gotserved. Looking at your CD4 and CD8 numbers they look almost identical to mine.
ID Dr says CD4 is fine and said raised CD8 was nothing to be concerned about. Well I AM CONCERNED, that with all my symptoms to me suggests HIV. I have been tested for many other diseases and all neg. I will share one thing with you though. I have been in this situation before 16 years ago and I convinced myself then that I contracted some rare HIV subtype. I was very ill for about 7 years but did recover. I put it down to stress causing CFSME BUT this time the symptoms are very different AND there is no accounting for the CDCD8 low ratio. I have written to professors in Sweden asking to look into my case but have had no reply. I will keep posting with any updates but I am at a loss as what to do. By the way what exactly happened to you? was it definitely a condom failure? Not sure about your lamb skin condom theory - do they really exist?
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replied September 27th, 2016
Experienced User
Just looked up and yes lamb skin condoms do exist but why woul anyone want to use one? Very strange.
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replied September 28th, 2016
I don't know if it was really lamb skin it felt like a latex condom but the thing is when she gave me the condom I looked at the condom and wrapper and no holes y would there be blood of hers on my penis after sex I know she had her period too because I found her tampon in the bathroom. The scary part was after sex which didn't last long she said smiled and said yes weird face. I'm convince need it's some kind of big subtype too because every symptom that I have is related to hiv symptom and my wife and kids have the same symptoms and the scary part is I know 2 of my kids got it from using the wrong tooth brushes ended up using mine and the wife's tooth brush . So I low definite they got it through blood and I had 2 kids after the incident so 4 kids infected and me and my wife. The scary part is I'm scared something bad might happen to my 2 new born of it is hiv because there immune system is not developed yet and week if they have a bad health issue or die God forbid . This is why I'm trying to find a solution so bad and infectious disease doctors are being so iggnorant and not thinking outside the box or if rare situation they have a bull excuse for every symptom. I took a loose stool bowl test and some other parasite and bug tests waiting on results. Thinking bout going to donate blood and get a good check through that way.want to go see a dermatologist for my groin rash , and from there want to make appointments with hiv specialists and maybe disease and control center see wat I can do . I took every std test plus a whole lot of other tests and all negative . So everything goes back to hiv especially if I know my wife got it from me and my 2 new borns plus 2 other ones from blood from toothbrush it limits a lot of diseases and hiv is the only one that makes sense, please update me on anything that happens with u
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replied September 28th, 2016
Justamatteroftime
I have a few questions. So your incident happened 16 years ago? And u don't have AIDS by now figured it would lead to AIDS. Secondly when first checked cd4 cd8 what was it first and what is now and what is the difference? Third u said u were very ill for 7 years with chronic fatigue? What kind of symptoms and how did u recover? And what symptoms do u have now and do you use any type of medication or herbs? Did u pass this disease to anyone? Anygood advice for me and my family and especially my 2 new born ? Last question how old are you and where u from? Sorry bout all the questions but I need answers please
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replied September 30th, 2016
Experienced User
Hi Gotserved. Here are my symptoms, lymphocyte subsets and tests:-


Symptoms starting 2 weeks post exposure:

Severe Headache
The most painful sore throat that I ever experienced duration 4 weeks
Rash on face
Diarrhea
Multiple mouth ulcers
Fever
fatigue
Tinnitus
rash on back of neck
Weight loss 1.5 stone
Ongoing symptoms to this day:

pain in left rib cage
stiff neck\neck pain also around collar bone, jaw and chin.
frequent opening of bowels up to 10 times a day
having to get up at night to urinate several times
Extreme flatulence
Stomach cramps
Bloating
Joint Muscle pain
Muscle twitching
fatigue
ear pain
Night sweats
numb feet
numb hands
Pins and needles in hands and feet
memory problems
double vision
Clinical observations


08\05\20002 CD4 count 1070 CD4 percentage 49 CD8 count 570 CD4 CD8 ratio 1.89
04\02\20004 CD4 count 1460 CD4 percentage 42 CD8 count 1090 CD4 CD8 ratio 1.35
30\09\2015 CD4 count 854 CD4 percentage 42 CD8 count 643 CD4 CD8 ratio 1.35
13\01\2016 CD4 count 0.95 ref range 0.71 - 1.31 CD4 percentage 43 CD8 count 0.84 ref range 0.33-0.67 CD4 CD8 ratio 1.13 ref range 1.56 - 2.64



CT scan revealed



Arthritis of lower back
mucosal thickening with surrounding inflammatory in the left colon and splenic fixture
Raised faecal elastase of 800
Raised faecal calprotien
Bile Acid Malabsorption
Gout
My tests are


3 weeks 4th generation
4 weeks 4th generation
10 weeks 4th generation
12 Rapid
12 weeks 4th generation
16 weeks 4th generation
20 weeks Biosure self test
24 Weeks 4th generation
26 weeks 4th generation
30 weeks PCR early detection COBAS taqscreen MPX test
40 weeks 5th generation
50 weeks saliva test home access
50 weeks blood test home access
50 weeks blood home access Alere Determine
51 weeks Insti Rapid
51 weeks 4th generation
52 weeks HIV 1 viral load
52 weeks Abbot RT PCR viral load
72 weeks Vidas Duo

Lyme negative
HTLV negative
EBV negative

16 years ago it started with a wild weekend in Bangkok. 4 prostitutes exposure was 3 BJs and me giving Cunnilingus. BTW thats me getting the BJs I am heterosexual.

I was aware of seroconversion symptoms and 2 weeks latter they all came:-

Diarrhea lasted 5 years
severe muscle joint aches\pain - so bad I couldn't walk more than a few yards at one point
White tongue
Severe fatigue
Headaches
Heavy night sweats
Burning legs - needed to where shorts all the time
Headaches
Peeling skin on palms

Probably more but I can't remember, but no sore throat or mouth ulcers that were VERY severe this time.

I should have listened to the first ID Dr who said it was CFS. He said just do everything your mother would want you to do. I didn't at first but when I did start eating properly, drinking and smoking less and most important of all EXERCISING. I started swimming an hour every morning and cycling 10 miles a day THAT was what made the difference and after 7 years I recovered.

From personal experience I can say for sure that stress will mess up your body and make you very ill. However looking at my Lymphocyte subsets compared to 16 years ago you can see something is VERY different. But even with that printed out and shown to many doctors they say nothing is wrong they say my blood tests are unremarkable.
The only glimmer of hope I have is that I have read that people with CFS can have raised CD8. The last ID Dr said my CD4 was reasonably high and he had no concern about the raised CD8. He also said that it was possible that I had HIV but it was as he put it "a point then a lot of zeros and 1 percent chance". So there you go, from a healthcare professional unlikely as it is it can happen.

The Dr did give me 2 courses of antibiotics, one last 3 months, I also had worming tablets. NOTHING worked.

Any way back to what you mentioned in your last post. I don't think donating blood in this situation is wise and definitely not ethical. If you are right and you do have a rare HIV strain that doesn't register on current tests you might infect some one that is already in a bad situation. You wouldn't want that, besides you've had every possible test anyway. Way more than they would perform on donated blood and if you did infect another person do you think anyone would really look into it, knowing how doctors appear care.

I think the only way forward is to what I am going to do and that is to test every 6 months using a different test manufacturer each time until a test is developed that works for what ever strain I PERCEIVE to have. 16 years ago one sexual health adviser said that the tests were based on subtypes prevalent where I lived, here in the UK and when new ones were discovered they were added to the test. He did say that the chance of a false negative from a rare subtype was winning the lottery odds.

I'm not saying that you or me defiantly have this disease, but like you until I get some other firm diagnosis I will carry testing. Nothing to loose.

I also had terrible gas but have found that if I avoid dark bitter beer (my favourite tipple) it is much better.

BTW I am 50 and from the UK

With regard to your family how is your wife copping, has she forgiven you? Is she as obsessed about this as you are.

My girlfriend isn't at all worried and has forgiven me and yes I had sex with her before the symptoms and I believe she too is infected as she is always tired and often has colds, sore throats etc. but all this could be Munchausen Syndrome by Proxy, had you thought of that?

Anyway I hope this helps. Keep updating.

PS any doctors that might be reading this that could help me
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replied October 1st, 2016
Experienced User
Hey Gotserved. Didn't you test positive for ebb? Isn't that your problem?
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replied October 2nd, 2016
Wats going on justamatter I appreciate the detailed
Information you provided me with.
First I want to ask u is cfs associated with hiv?
As well does eating healthy and lots of exercise help u with all of your symptoms especially joint and muscle pain and how about other symptoms?
Another thing I noticed that your cd4 has declined in almost half and ur cd8 is high . Something similar to wats going on with me my cd4 going down and cd8 elevating . With the cd8 elevating High it means we have an infection for sure.
Another thing with donations blood as much as possible wouldn't it make sense that the more awareness of this infection and the more complains to ID doctors the more research and more people will be diagnosed and given treatment then turned down and have told nothing is wrong with u. Maybe more complaints will have research done on this rare subtype and have it detected and diagnosed with newer hiv tests.
I see you have taken every hiv test available I took all of them as well except the COBAS early detection and the 5th generation. You should look at taking rna viral load tests, multispot test which is the replacement of the western blot tests.
Before u wrote your last reply I figured u might of had chronic Lyme disease but u said u tested for it .
I was positive for ebv I don't know what is ebb but ebv 90% or more populatiOn has it here in the states and it goes away after a year dormant so no this is not my issue. I'm at 3 years with hiv symptoms .
As far as my wife she assumes I got it from sleeping around I never admit it I gave a different cause but she seems doubtful of what it tell her but I do intend on telling her I'm just scared to I've hurt her too much in the past and don't want to hurt her more she may end up forgiving but not forgetting and it stresses her out . As far as her symptoms goes she does have a lot of muscle and joint pain and other stamp rims this is not know muenchasem syndrome and my kids have some notable symptoms. I'm not here making believe or guessing symptoms on my wife and kIds, one of my kid is having loose stool for 6 months now and my other one is having constant clearing throat or dry cough. She as well don't put thought into this whole thing like I do she really don't care much like yours lol.
I'm going to approach this in a few ways.try to donate blood to see if anything would be detected with my blood. Go to see a dermatologist to see if they can identify my rash , wait on my loose stool bowel test and other bug test to come me back, then go see an hiv specialist and explain everything happening to me and my family l and see if anything will be done . Then if nothing is done . I need treatment for me and my family. So I will look at other treatments for I'm more of an herbalist anyways and have other treatments which I think might work well .
Have u tested for syphillis?
I as well see that hiv is on the rise in U.K. As well hopefully we figure this out my friend and come up with a great solution and get treated and move on with our lifes
Well let me know what u think of what I said and if u want I might know a couple of herbal supplement . Looking to hear from u ,
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replied October 2nd, 2016
Experienced User
hI Gotserved. Chronic Fatigue syndrome (CFS) ha snothing to do with HIV but can be caused by stress as you know I have had first hand experience of that.

This time rounfd the exercise isn't working. I used to be a good swimmer but now strugle to swim for 15 minutes as my arms hurt so much. Like a dead arm.

My exposure was in Gambia not here in the UK.

It was getting a blow job, when I went for the first test the Dr said I didn't even need a HIV test as I have been tested 3 year ago with my girlfriend and both negative. Neither her or me have strayed.

I have tried in vain to get a WB even asked 2 different online blood test websites and they won't perform the test without a reactive elisa. I think that test might shed some light on the situation. Saying that yours was negative.

I have just ordered another home test from china. Not approved here but I don't care. We only have Biosure as a registered self test. I don't think you have any thing apart from home access in the US.

One thing I would say from your post is that your symptoms started after a week that would be too soon. Also you had no fever or ulcers - that's encouraging.


I am going to make an appointment this week to see another Dr and start from scratch. I have already seen two ID Drs one was a pompous old fart who was not interested the other a rookie.

I will keep you posted. Hopefully we will get answers.
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replied October 10th, 2016
Hi,

been reading all your posts. I have same problems as most of you here. My tests 3rd and 4th gen were negative even after 6 months. I m waiting to do 9 months and 1 year test. I still have problems with enlarged spleen and liver, rash, thrush, enlarged lymph nodes... and no answers for them.

I guess that those tests just dont work and i have found a doc. on t h e b o d y dot com that said:

Patients with Group O ('O' stands for 'Outlier', and 'M' stands for 'Main') or non-clade B M strains of HIV-1 may have falsely negative ELISA screening tests for HIV. Additional antibody testing can be done via the US CDC (see Jaffe reference below) in the event of a high index of suspicion on clinical or epidemiologic grounds for HIV infection in regions of highly prevalent non-B clades, as in Asia or Africa."
Dr Renslow Rogers .

So tests are not 100%. Wish you all good luck and a lot of health, please keep us updated up here there is many of us out there and we need to find out whats wrong with us.
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replied October 10th, 2016
Experienced User
Hi just amatteroftime
As far as i understand your risky untercourse was 16 years ago right?next month mine will be 12nd and i will get checked for both htlv and hiv and update here
Good luck everybody
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replied October 11th, 2016
Experienced User
Hi Nicelescu. The first time this happened to me it was 16 years ago. this time it was 20 months ago.
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replied October 20th, 2016
Experienced User
Update just took the EZ- rapid HIV test ordered from China - Negative. Seeing DR on Tuesday next week. Will update then.
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replied October 20th, 2016
Experienced User
Glad to hear it you came negative.
Any update from scared or sb else?
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User Profile
replied October 28th, 2016
Extremely eHealthy
Anyone started taking Truvada besides me? Next month it will be 5 years since I was infected, and 1 year since I started Truvada.

Best wishes.
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