Is it a new disease or its CFS ?

I

Insajad

Messages
64
@patient.journey
Please can you answer me what are you chest problems ? You said in a previous post you have chest troubles can you please describe them ? Difficulty breathing, pain, abnormalities in x ray ???? Please answer me
 
L

LTsufferer

Messages
9
My story is remarkably similar except it was 26 years ago. My life has been tot changed forever. I have been tested for everything known to man (21 hiv tests!) but everything normal except for extremely low lymphocytes. Looking at your symptoms I am sure we have the same thing. I also suffer with severe brain fog and numbed emotions.
 
Jammy88

Jammy88

Senior Member
Messages
163
Location
Italy
I’d like to know how is everybody doing today.
I have a similar condition, you can find the story in some threads I opened years ago.
I’d like to know whether I’m still contagious or not . I met a new person whom I truly like . But I’m scared of making her sick
 
E

Ethereal55

Messages
22
LTsufferer said:
My story is remarkably similar except it was 26 years ago. My life has been tot changed forever. I have been tested for everything known to man (21 hiv tests!) but everything normal except for extremely low lymphocytes. Looking at your symptoms I am sure we have the same thing. I also suffer with severe brain fog and numbed emotions.
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Not sure if you are still around, but i have the same thing going on. Everything normal except low lymphocytes. I do have other underlying conditions but oddly enough those do NOT affect lymphocytes.
 
W

woshishui

Messages
21
Overstressed said:
Hi Ashler,

I had years back an intense contact with Prof. Schüpbach and another Prof. here in Belgium who knows Prof. Schüpbach very well. Both are specialists in retroviruses. But, from what I understood, from the Prof. here in Belgium is that the PERT-assay is not sensitive enough. I don't know how sensitive it is now.

Prof. Schüpbach invited me to Zürich, to get tested, preferably together with my wife. My wife is not informed about what happened to me, so that was not an option. I had the feeling that Prof. Schüpbach was not that much interested in testing me alone. I guess it gives perhaps some clue how sensitive the PERT is.

In stead, the Prof. here performed another specific test, something she's using in research area specifically on HTLV. This test was negative. According to her, the test she used was more sensitive than the PERT.

Again, I don't know how sensitive the PERT at this very moment is, and Prof. Schüpbach is a very nice man. At this moment, I'm considering to pay him a visit. I'm pretty sure I'm infected with a retrovirus. I'm experiencing immune deficiency, that's clear. My symptoms are much less, but I'm catching everyting there is. So, there's an ongoing factor contributing to this deficiency.

Best wishes,
OS.
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are you ok?
 
W

woshishui

Messages
21
patient.journey said:
Its been almost year since that damn night that changed my life , i had sex with a CSW and in one week every thing start to change and those are my symptoms since now :

1) Oral trush on my tongue with red spots.
2) Enlargement painful lymph node in armpit , nick and groin area (CT scan proved )
3) Skin rashes on the chest and behind my ears and skin tingling.
4) fatigue.
5) muscle pain.
6) Dry mouth, Oral ulcers.
7) stomach ache.
8) abdominal pain.
9) chest pain.
10) shortness of breathing.
11) night swets on the beginning of the illness
12) nasal congestion.
13) CD 8 is higher than CD 4 and there ratio between them is under the normal.
And there other symptoms but there are the big ones that became a night mare that am 24/7 suffering of .

100 tests including all STD’s , lymph biopsy , colons copy, and they are scheduling a bone morrow biopsy and an endoscopy and still nothing appeared .. some doctors says it might be a new thing and some says that they might miss something and others got bored and asked me to take pain killers maybe my symptoms will get better by it self by the time !!!!

What i want to say that a lot of people have the same symptoms cause i saw questions about this every were in health boards and medical websites even here i found a post was written by Hanchuchu two or three years ago with no answers asking my same question could this be CFS is the same you are feeling or not ? did any one get it during sexual exusre or passed it out throw ?!

I hope we can figure something , i hope we can find help and i need answers and am sure i will find help here cause a lot of you guys are suffering from bad symptoms and i saw how you are fighting, reading and waiting researches and trying to help each other so please help me so if is it a CFS i will keep with you and will help each other or if its not i need your help so you wont see another Hanchuchu after two years again having the same question " IS IT CFS" please guys help me ..
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Jammy88 said:
I saw that you have a CD4/CD8 ratio of 2. I believe that your problems might be caused by HTLV or something analogous. You are conclusively HIV negative (with HIV you'd have a CD4/CD8 ratio lower than 1). Do you have a monoclonal gammopathy? This wouldn't prove anything, except that you have a rheumatological or hematological problem. HTLV could cause both, but again, we're actually unable to prove the cause for the majority of autoimmune diseases. The only thing we know for sure is that they're caused by infections. And this is spreading quick. Nowadays we have an 'autoimmune' epidemic. Of course these are just undiagnosed infections; you're not crazy, you certainly caught something from that girl. I'm sorry for what you're going thru and I wish you the best of health asap.


best
Click to expand...
you ok?
 
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patient.journey

patient.journey

Senior Member
Messages
444
Fourteen Years, and I'm Still Here
It’s been nearly 14 years, and somehow, I’m still here.
This thing — whatever it is — has stolen my life.
I wouldn’t lie and say I haven’t had good days. And no, I never wished to die.
I’m thankful for the time I’ve had, for the memories I’ve made, and for every fight I’ve pushed through.
But after all these years — and after thousands upon thousands spent on treatments and medications — I’ve tried everything.
And still, I’ve never truly gotten my life back.
We’re living in the age of AI, gene sequencing, and rapid medical advancements.
And yet… here I am.
Still sick.
Still searching.
Still being told it’s “all in my mind.”
I even convinced myself for a while. I tried to believe the doctors. I got married.
And two weeks later — my wife got sick.
Unknown PID. Four months of heavy antibiotics, antifungals, every test — nothing came up.
All cultures (aerobic, anaerobic), PCRs, microbiological scans — nothing.
Just bloodwork showing WBC elevation, sore throat, gut issues, and a white tongue.
Somehow, she went into remission.
I started to wonder — maybe i had two infections.
Which she could tolerate while the pid was something else “bacterial maybe.
I even tried everything she had done before, but I never reached remission.
She still deals with allergies, gut issues, and strange symptoms — all starting after we married.
She was healthy before.
Now, seeing her in pain gave me the strength to try again.
I considered mycoplasma and ureaplasma, maybe resistant strains.
I did 3 months of minocycline, 30 days of tinidazole, and 30 of itraconazole.
And honestly? It wasn’t bad.
I felt 70–80% better. I had more good days.
But I can feel it: my body is just waiting for the treatment to stop — to relapse again.
I’ve done the herbs. I’ve detoxed.
And still, I’m here. Better with treatment, but never well.
My theory now?
It must be viral — something that colonizes the gut, damages the immune system, keeps the body in a state of chronic activation.
For 14 years, my lymph nodes have been swollen. My body feels like it’s been poisoned.
But watching this happen to my wife — it’s breaking me.
I just wish someone, somewhere —
on some server, in some lab —
has figured this out.
And would talk to me.

After those years I look back and smile, remembering the guy who told me one day this is a failed vaccine for hiv as it seems to be true after all those years, epsically after the covid era and what we have seen
 
ChaoticOrchid

ChaoticOrchid

Messages
17
Prefacing by saying I know nothing about this potential illness... but as this popped up today I read this thread for the first time.

Your post from today made me wonder if you have lived in the same house all this time and your wife then moved in with you. I have heard, now and then, about people's houses having hidden issues that make them ill.

No idea if that is applicable or not, just a thought.
 
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