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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Is it a new disease or its CFS ?

Sherezade

Guest
Messages
97
Hi guys, i havent forgotten about you, but i have been kind of busy these days.

I'm working on my adrenal fatigue, with some herbs, trying to get rid of the candida, and working on improving my sleep quality. I'm glad to say that i lower my sleep medicine dosis (seroquel) to half and it's working fine. Instead i take a very powerful tea, with chamomile, tila and valeriana before going to bed.

In my case, after reading a lot and consulting to many doctors, apparently the problem is in my adrenals. Low cortisol in the morning, and high in the night, which affects my circadian rithm. So, since no doctor will give me corticoids, i'm trying with some herbs like siberian ginseng and ashwaghanda.

Hope you guys are doing fine.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've got the same finding (low cortisol AM). Seems to be very common in CFS although I have a ME diagnosis.

You can buy cortisol drugs or see one of the CFS doctors who use them. Lots of info on the patients forums about their experience supplementing.

Hope it all goes well for you.
 

Sherezade

Guest
Messages
97
Hi UKXMRV, i was reading that candida overgrowth can damage your adrenals. Do you have candida issues?

I am cleaning and detoxing my body, with diet and supplements. I hope i improve with that.
 

patient.journey

Senior Member
Messages
443
Hello!
I from Russia.
I think that I am ill "New HIV-Like Virus"
As I have many symptoms described here https://sites.google.com/site/newhivaidslikeviruschina/home
All has begun 4 months ago the ambassador of a trip to Taiwan where I had a sex with the prostitute. I used a condom, but the virus was all the same transferred to me possibly through a kiss.


First of all sorry to hear that you re sick,,,

what are your symptoms now ?
how did the symptoms started and ?
are you feeling better ?
what tests did you have up to now ?
did any tests show anything ?

Reading your test results showed mostly normal results except little increase or decrease in some results if you can write those results by English " the ones with abnormalities" it will be much easier for us to read.

Thanks,, Omar
 
Messages
9
First of all sorry to hear that you re sick,,,

what are your symptoms now ?
how did the symptoms started and ?
are you feeling better ?
what tests did you have up to now ?
did any tests show anything ?

Reading your test results showed mostly normal results except little increase or decrease in some results if you can write those results by English " the ones with abnormalities" it will be much easier for us to read.

Thanks,, Omar

My symptoms now:
White tongue coating
Swollen lymph nodes in the lower jaw and on a neck
Drowsiness
Twitching muscles
Joints make cracking or popping sounds when moved
Hair loss on the body. And on a head.

My result:
CD4=590-35.1%
CD8=540-31.8%
CD4/8 ratio = 1.1
Leukocytes: 4.2x10*9/Litre (Normal values 4.5 - 11.3х10*9/Litre)
Lymphocytes %: 40 (Normal values: 19-37)

Symptoms started:

Continuous low-grade fever and flu-like feeling. Loss of appetite. Ongoing fatigue and weakness, with mental and physical fatigue after exertion.
White tongue coating.
Fast heart rate (tachycardia).
Extreme generalized anxiety disorder, depression, anhedonia, and powerful suicidal ideation. Poor memory, confusion and cognitive dysfunction.
Hands and feet numbness.
Weight loss in the first 3 months. Later the weight has increased.
Poor sleep. Night sweats.
 

patient.journey

Senior Member
Messages
443
My symptoms now:
White tongue coating
Swollen lymph nodes in the lower jaw and on a neck
Drowsiness
Twitching muscles
Joints make cracking or popping sounds when moved
Hair loss on the body. And on a head.

My result:
CD4=590-35.1%
CD8=540-31.8%
CD4/8 ratio = 1.1
Leukocytes: 4.2x10*9/Litre (Normal values 4.5 - 11.3х10*9/Litre)
Lymphocytes %: 40 (Normal values: 19-37)

Symptoms started:

Continuous low-grade fever and flu-like feeling. Loss of appetite. Ongoing fatigue and weakness, with mental and physical fatigue after exertion.
White tongue coating.
Fast heart rate (tachycardia).
Extreme generalized anxiety disorder, depression, anhedonia, and powerful suicidal ideation. Poor memory, confusion and cognitive dysfunction.
Hands and feet numbness.
Weight loss in the first 3 months. Later the weight has increased.
Poor sleep. Night sweats.


You have good immune tests for 4 months patient ,,

I didnt have have those until my 7-8 month and had them not again after a year and 10 months, but i had WBC and other normal tests always and here what i can tell you.

When i first got sick my WBC dropped down to the limit between normal and not but they were higher than yours since i never cross the line of normal while yours did after that it start to get higher month by month until i had my first test like yours,,
It showed a very high CD8 indicating fighting an infection and my CD4/CD8 ratio was .8 as an AIDS patient !!

My last tests were good i think but it took a nearly 2 years to get here and i cant be sure if any of the stuff am fdoung is helping the most.

If you have enough money you should travel and see a CFS good doctor, me and other patient could help you with that, if not you should have some tests in your country and we would help you with this too so you could try to figure what is the best treatment to start with ASAP.

Try to take good pain killers as this is the worst period of your illness, you will get better soon but you wont be healthy like before except if you found your illness cause or a treatment that would help you up.

Best wishes, Omar
 

Sherezade

Guest
Messages
97
My symptoms now:
White tongue coating
Swollen lymph nodes in the lower jaw and on a neck
Drowsiness
Twitching muscles
Joints make cracking or popping sounds when moved
Hair loss on the body. And on a head.

My result:
CD4=590-35.1%
CD8=540-31.8%
CD4/8 ratio = 1.1
Leukocytes: 4.2x10*9/Litre (Normal values 4.5 - 11.3х10*9/Litre)
Lymphocytes %: 40 (Normal values: 19-37)

Symptoms started:

Continuous low-grade fever and flu-like feeling. Loss of appetite. Ongoing fatigue and weakness, with mental and physical fatigue after exertion.
White tongue coating.
Fast heart rate (tachycardia).
Extreme generalized anxiety disorder, depression, anhedonia, and powerful suicidal ideation. Poor memory, confusion and cognitive dysfunction.
Hands and feet numbness.
Weight loss in the first 3 months. Later the weight has increased.
Poor sleep. Night sweats.

Oh dear, sounds so familiar... Anyway, it would be interesting to know the functioning of your adrenal glands. Ask a doctor if you could test that.
 

mellster

Marco
Messages
805
Location
San Francisco
Twitching, low-ish white blood cell count with high-ish percentage-wise lymphocyte count (total is likely in range due to overall low-ish WBC) seems to be of early and middle stages for many and the normalizing of those values are observed with recovery. May be an interesting lead although it can be explained with continuously fighting one or more infections.
 
Messages
25
Our disease looks like weaponized Q fever. Q fever is pinned to some virus to increase contagiousness . Please check below link. This person got Q fever negative tests. But followed q fever medicines and cured.


This link gives hope. But trying antibiotics for 18 months is very difficult.
http://www.legion.org/washingtonconference/214028/has-man-conquered-gulf-war-syndrome
http://www.ncbi.nlm.nih.gov/pubmed/22427048

Because q fever is highly infectious and it matches to all our symptoms .

http://www.biomedcentral.com/1471-2334/11/97
http://www.cdc.gov/qfever/symptoms/
kindly discuss your opinions
 
Messages
37
Location
Europe
It showed a very high CD8 indicating fighting an infection and my CD4/CD8 ratio was .8 as an AIDS patient !!


Did you ever have an HIV PCR RNA test? Just curious seeing this inverted ratio of yours.

As some of you, some HIV alike symptoms (ARS) about 2 to 3 weeks post exposure (unprotected receptive fellatio from a girl - I am a male) and protected intercourse: a swollen gland in the neck, neck stifness and then a painful urinary track infection. Risk ocurred in Feb 2012.

From June 2012 to now I have severe tongue problems: swollen and white tongue, raised tastebuds in the border of the tongue which are VERY sore: Photos in the link below:

http://www.medhelp.org/user_photos/list/2076759?personal_page_id=2596706

Had 5 HIV tests so far (4th Generation Elisa), all negative up to 9 months post exposure.
 
Messages
9
Did you ever have an HIV PCR RNA test? Just curious seeing this inverted ratio of yours.

As some of you, some HIV alike symptoms (ARS) about 2 to 3 weeks post exposure (unprotected receptive fellatio from a girl - I am a male) and protected intercourse: a swollen gland in the neck, neck stifness and then a painful urinary track infection. Risk ocurred in Feb 2012.

From June 2012 to now I have severe tongue problems: swollen and white tongue, raised tastebuds in the border of the tongue which are VERY sore: Photos in the link below:

http://www.medhelp.org/user_photos/list/2076759?personal_page_id=2596706

Had 5 HIV tests so far (4th Generation Elisa), all negative up to 9 months post exposure.

I did HIV PCR RNA test two times. All negative.
 

patient.journey

Senior Member
Messages
443
Update:

My ANA became positive after two years of my illness !!

A lot of ideas in my mind but not sure if anything is true ,, more than 30% of HIV negative AIDS in china had positive auto antibody to interferon gamma !! am i becoming one of those after getting an unknown infection ?? i cant answer

I will have my ANA repeat it twice this month to be sure because it low positive and i would e testing my RF too with other routine tests to see how is my body functioning and if there are inflammations or not and i will update you guys

Pray for me those been the worst two months since the first 3 months of my illness bedside new Corona virus that killing people with low immune system and other chronic trouble is around here in my country so am wearing mask every time i should go to the hospital
 
Messages
37
Location
Europe
No i didnt but i will have one soon and am trying to get a wetren blot too

Given the inverted ratio, a PCR RNA test for HIV is recommended. Western Blot is senseless and would be a waste of money because it looks for antibodies, and you already had several Elisas (which are way more sensitive than Western Blots)