• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Is it a new disease or its CFS ?

undiagnosed

Senior Member
Messages
246
Location
United States
Hi who is still active from this thread? Hope your all doing ok.

I believe I've recently come down with whatever this is and I also believe it's spread through my family :(

I've never posted to this thread but I have similar issues as described in my Undiagnosed Immunosuppression thread. The leading hypothesis for myself in that thread is a divergent strain of HIV. I'll be posting later today with an update there showing how I am using Bayesian inference with the available evidence to come to that conclusion. It's been over 5 years for me and I'm getting worse as time goes on. I'm pretty worn out, but I'm hoping I can get a diagnosis before my quality of life gets much worse. What's the deal with you?
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@Omar88 They usually don't test men for HPV, but there are about 15 strains known to cause cancer in the mucous membrane areas of both men and women - that would be genitals, anal, mouth- throat - lungs. In women HPV cancer kills more than HIV does, usually by cervical and anal cancer. The medical establishment has noted a huge increase of HPV cancer in men.

One doesn't have to have anal intercourse to get anal HPV cancer. Unfortunately even condoms don't protect against it since it is very easily spread by contact.

Certain dentists, not all, swab and screen for HPV which is more commonly found in men. They have found HPV to be very common in military men who of course may be patrons of certified social workers.

Hopefully you can warn your CSW to get checked and prevent further damage to him/her and their other contacts. Many viruses have a multi-day or week incubation period before symptoms are noticed - and you may or may not be communicable during that period. So it is entirely possible that the illness did not start from that CSW event since it was so recent. However you may have spread the disease to the CSW.

In any event, I would look into nutritional deficiencies find those and replete, some nutrients such as the mineral magnesium are very critical to all body functions including the immune system. Sadly an estimated 70-80% of Americans are deficient in magnesium with many snowballing consequences. Check out this chart:
http://gotmag.org/magnesium-deficiency-101/

Have you eaten liver? It is an excellent source of many critical nutrients, including the largest food form of true vitamin A, which is called the anti-infection vitamin. Most vitamin supplements say they contain vitamin A but in the fine print you will see it is actually carotene, NOT vitamin A. Unfortunately carotene converts extremely poorly, if at all, to vitamin A. If you can't swallow liver try it in capsules or cod liver oil capsules.

When in good health, replete with nutrients, the body can fight off many viruses. You may not be able to get rid of the virus as they are shape shifters, adept at quickly changing form and going into stealth mode, i.e. as in the chicken pox virus which gives you a massive amount of pox during the initial infection, but years later it may re-emerge in a new form called shingles, an extremely painful form that may get a foothold when your body is warn down or in need of nutrients.

There are many plants and mushrooms that have anti-microbial powers. Eat lots of fresh garlic and onions and google for more options. Plants are marvelous at creating chemical weapons in order to survive since they can't run and hide from predators.

Humans and animals have long consumed plants to use their chemical compounds for their medicinal powers. Plants are responsible for our survival to date. We won't live long without them.

Green leafy veggies and pumpkin seeds are often good sources of magnesium, but you will probably need more in supplement form since our drinking water has largely been stripped of minerals, and soil stripped of minerals and no longer have much magnesium in them.

And while taking drugs, realize that many of them deplete you of nutrients and that will make you very unhealthy and could kill you. Check out the book, "Drug Muggers," written by a licensed pharmacist.
See: https://www.amazon.com/Drug-Muggers...8&qid=1485545625&sr=8-1&keywords=drug+muggers

It is survival of the fittest, and that doesn't just mean who is strongest in the gym.
Cheers on the journey of health.
 

Hip

Senior Member
Messages
17,824
STILL SICK AFTER 5 YEARS !! STILL STANDING AND STILL FIGHTING

Hi Omar88

Nice to hear from you.

Did you not get the improvements that many with the Chinese "HIV-like" virus report automatically appear after around 1 or 2 years with the virus? Not all patients report this, but such improvements are common.
 

patient.journey

Senior Member
Messages
443
Hi Omar88

Nice to hear from you.

Did you not get the improvements that many with the Chinese "HIV-like" virus report automatically appear after around 1 or 2 years with the virus? Not all patients report this, but such improvements are common.
ut


Hi Hip

yes i did have good times up too 90% healthy after 1.5-2 years with the help of 6 months course of antivirals and antibiotics but wasn't back normal again .. i cant live the life typically healthy people do but i can live , and work and when i go to try sport or night life i cant because in the next couple of days i will have pains, fatigue and multiple symptoms around ..

i still live with symptoms for those years and they are lymph nodes from a time to another , body aches , chest troubles and some dizziness and my body dont get fever any more or high wbc when i get sick its pains every were and other symptoms !! ( those are what i usually have but who is 100% healthy in this life so i push my body and continue to live and fight )

the newest thing happened 8 weeks ago i had rash then sore throat - night sweat - armpit lymph pain - body aches - fatigue -and itching all over .!!! this was weird cause it was continues and i stopped having rashes years ago and those symptoms are the same i had when i start my illness but less severity and are still going around all those 8 weeks ! specially lymph nodes pain in armpit and nick that i feel they are fighting but dont know what

i went to pharmacy and got Zovirax antiviral and started 400 mg 3 times daily 3 days ago and i would start levofloxacin today as 1 pill a day ( i will try this course for 2 weeks and continue if there are any improvements )

Hip how are you and how is your health ? how life going with you ?

any new findings ?
 

Seven7

Seven
Messages
3,444
Location
USA
sore throat - night sweat - armpit lymph pain - body aches - fatigue -and itching all over
You should get checked by a doctor. Those symptoms can be signs of Lymphoma (sorry don't mean to scare you or being inappropriate but wanted to point this out).
 

Hip

Senior Member
Messages
17,824
and work and when i go to try sport or night life i cant because in the next couple of days i will have pains, fatigue and multiple symptoms around ..

I think those symptoms that you get for a few days after exerting activities like sport and nightlife could be post-exertional malaise (PEM), which is a very common occurrence ME/CFS. The fact that you seem to have PEM suggests that the disease caused by the Chinese "HIV-like" virus is similar to ME/CFS.

Post-exertional malaise is where physical exercise or exertion (and sometimes mental exertion too) will cause a worsening of ME/CFS symptoms for a few days afterwards. PEM is a major problem for many ME/CFS patients, as it limits what they can do. ME/CFS patients have to avoid strenuous exertion, otherwise they get hit by PEM for the next few days.

Some members of this forum have discovered that certain supplements (such as very high dose Q10) help prevent or reduce PEM, so you might consider trying these next time you exercise, to see if they help. See this thread:

List of Supplements Which Reduce PEM (Post-Exertional Malaise) Crashes



Generally if you are able to work, then your ME/CFS is mild. The level of severity of ME/CFS is usually described in terms of mild, moderate or severe.

Myself, I have moderate ME/CFS, and not really able to work. I am still trying find some treatments that would improve my condition. If I improve myself to get up to mild ME/CFS and start working again, that would be great.

I got some viral testing for coxsackievirus B recently, and found I have high titers to coxsackievirus B4, so CVB4 may be the virus I caught that is causing all my troubles.
 

patient.journey

Senior Member
Messages
443
I think those symptoms that you get for a few days after exerting activities like sport and nightlife could be post-exertional malaise (PEM), which is a very common occurrence ME/CFS. The fact that you seem to have PEM suggests that the disease caused by the Chinese "HIV-like" virus is similar to ME/CFS.

Post-exertional malaise is where physical exercise or exertion (and sometimes mental exertion too) will cause a worsening of ME/CFS symptoms for a few days afterwards. PEM is a major problem for many ME/CFS patients, as it limits what they can do. ME/CFS patients have to avoid strenuous exertion, otherwise they get hit by PEM for the next few days.

Some members of this forum have discovered that certain supplements (such as very high dose Q10) help prevent or reduce PEM, so you might consider trying these next time you exercise, to see if they help. See this thread:

List of Supplements Which Reduce PEM (Post-Exertional Malaise) Crashes



Generally if you are able to work, then your ME/CFS is mild. The level of severity of ME/CFS is usually described in terms of mild, moderate or severe.

Myself, I have moderate ME/CFS, and not really able to work. I am still trying find some treatments that would improve my condition. If I improve myself to get up to mild ME/CFS and start working again, that would be great.

I got some viral testing for coxsackievirus B recently, and found I have high titers to coxsackievirus B4, so CVB4 may be the virus I caught that is causing all my troubles.

I can't say it's mild or not but what I know it's painful more than other CFS patients I talked too but brother I need to work so I can continue testing and treating my self ! I wake up every morning with a restless sleep and painful lymph nodes and others body painful symptoms but staying in bed is more painful
 
Messages
11
Hi Overstessed its great to know that am not alone and you are not cause we need each others and every time i get in a new health board i found new people like me and you and am really sorry for your situation cause i know what is this pain and how does it hurt ,,

Its really hurt that we got this new thing "As they say" when i had it i never thought i would be in this place i thought i will be ok in a week or two ,it was my first time when i brake up with my 5 years GF and i went out stupidly drinking and here am i while other people use CSW regularly are damn fine !! is it karma or what ever we can call it i don't know ! am sick of testing but i cant stop am sick of fighting with doctors saying I DON'T KNOW and asking me to go to USA or Europe maybe they will figure something while i don't have the cash for that and more stuff , thanks god some of my doctors are amazing that we search together and we are friends now.

CD8 is high cause your body is fighting an infection it could be systemic bacteria or a virus i don't know as doctors don't but this bug is bad its letting all other dormant viruses reactivate as testing titres said or its maybe that bad by it self am not sure ,, I have headaches sometimes and i eye pain when i have that but not all the time and i have more symptoms than i mentioned but just like i said before those are big ones..

What tests did you ran and something weird appeared ? do your doctors have any thought of rare diseases that might be the reason like systemic bacteria ,retro or entroviruses or any thing else ?!

Please keep updating me brother a group can do much more than an individual can do ..
I feel so identified with your case is equal to mine.
Sometimes I think that this disease is a karma ..
I emferme in the same way you.
The bad thing is that the doctors did not find any virus told me to continue with my life ..
So I did now my girlfriend has symptoms four months ago but she has not developed CFS and usually is fine
It is a contagious virus but I have the others seems not to generate cfs.
Other people generate other symptoms as explain hip on their website.
 

ChookityPop

Senior Member
Messages
583
ut

yes i did have good times up too 90% healthy after 1.5-2 years with the help of 6 months course of antivirals and antibiotics but wasn't back normal again ..

i went to pharmacy and got Zovirax antiviral and started 400 mg 3 times daily 3 days ago and i would start levofloxacin today as 1 pill a day ( i will try this course for 2 weeks and continue if there are any improvements )

any new findings ?

Can I ask what antivirals and antibiotics you took?